Kati's Korner

Still Persevering

2012-02-18T10:48:00.000-08:00

My weeks have been filled with treatment and, consequently, dealing with the side effects each brings. My neuropathy continues to get more pronounced, but my Stanford doctor has asked me to try to hang in their until March when he will see me and can evaluate my response. Acupuncture treatments do help some. They're not covered my medicare but I still try to go at least once a week.

Once a month I get all of my drugs and so it has taken a little time to determine which drug is causing me such severe side effects. Through email conversations with my Stanford doctor it has been determined that I am having a rather severe reaction to the Zometa (bisphophonate). It was given over a longer infusion time of 1 hour this past week which did reduce the level of side effects, but we have decided to switch to a different one and this infusion may also be moved to a day that I'm not getting chemo.

Friday, February 10, was my big treatment day for this month. My blood work was done the week before and my white count was too low for treatment. So we had to travel to Chico on Wednesday and Thursday for neupogen shots to force my bone marrow to make more white blood cells. As it turned out, one shot would have been enough as my white count was really high on Friday and my red count was really low and was borderline for ordering a transfusion. Blood counts always get a lot lower in the succeeding days following treatment, so within a few days I could barely get around as my red count got really, really low. A CBC was done again on the 17th prior to treatment and I was glad that things had leveled out. Fortunately, I was only getting one chemo drug and my steroids, so shouldn't have as much difficulty this week.

In January I had a follow up appointment for the kyphoplasty done here in Redding in September. We took all the reports and CD's from the MRI's done at Stanford to this appointment with the local interventionl radiologist. He discovered that there is another compression fracture visible on the CD that the Stanford report did not mention. He showed me on a chart that this is the fracture that is causing my current discomfort. He does not want to do a procedure now either, but it means I have to wear the back brace again and very limited again with what I can do. I am to contact him after I complete my treatment. He is hopeful that if I don't have to be in treatment too long, that there might be some healing without further procedures. However, the steroids I have to take every week interfere with the healing and the bone building from the bisphosphonate will take quite a bit of time before I experience much help with my bones.

After much consideration and prayer, I did go ahead and begin another semester of choir. Since my treatments are on Friday, I am feeling pretty good on Thursday. I was told again that I need to keep moving and keep my arms moving without lifting, so choir does satisfy those requirements. Also, in all the reading I have done about living with cancer, it is encouraged that a person have something they do that is not related to cancer cause cancer can and does end up consuming your life.

We have determined at this time that the protocol for stem cell transplant at Stanford would not be a good fit for me. We have asked for a referal to the transplant program at UC San Francisco and are waiting to hear from them.

Thank you for you email, notes, cards and phone calls. They always seem to come just when they are needed most. Your encouraging messages always lift our spirits. It is a constant battle to keep our spirits up when my side effects have to be dealt with on a weekly basis and there are sometimes just a few days of feeling like I can function. It is also a struggle for me to have lost so much independence. I am very dependent on Steve, or whoever I'm with, to lift things for me and to have an arm to hang onto when I walk so I don't fall. My feet are numb, my lower legs are numb, my vision is a little blurry, and my drugs make me dizzy enough that I sometimes feel like I'm on a boat, and I must not fall anymore as my back cannot take another injury. Other than that, I still have hair, although quite thin, and I still have a rosy glow to my cheeks compliments of my steroids.

Conquering the Tube!

2012-01-06T01:06:00.000-08:00

I'm sure everyone is wondering what we found out at Stanford this week and how I did with my MRI's.

The first MRI on Tuesday afternoon went quite well, in spite of the fact that I was given my sedation just 30 minutes prior to the procedure instead of the recommended 1 hour. We hadn't eaten lunch until we arrived at Stanford which was just before 3:00, so it didn't help that my stomach was full of food. However, I did really well and the tech was really good about talking to me through the microphone and keeping me informed of each step and how long it would take. A friend from my support group said it really helped her to cover her eyes with something so she wouldn't be tempted to open them and then see how close around her everything was. I took her advice and covered my eyes with a handkerchief. I tried not think about the correlation to a firing squad! I did have one brief moment of panic when I realized I was entering the tube before 4:30, the time I had asked everyone to pray. But I took a deep breath and in my mind sang the words to the hymn "Abide with me....". Of course, I only remembered the first verse, but it was enough to keep me occupied for the next 45 minutes. For those who have never had an MRI, those things are NOISY! Ear plugs are required and provided and they are still noisy. I soon realized that I was singing louder in my mind as the machine got noisier! One thing that helped, too, was that I didn't feel the edges of the tube touching me which would not have been a good thing for me. The tech's assistant didn't quite know what to think when I was finished and he came to help me off the skinny little table and I lifted one side of my handkerchief and said "peek-a-boo!" I was just practicing for the next event of the day - a visit with our little granddaughters. We headed on down the road with everyone else vacating the city at 5:00 pm on our way to Jen and Jeff's where we spent the night. I was really sleepy all evening and slept really well all night and was still tired the next morning from the sedation I was given. Jeff is still laughing cause I fell asleep in the middle of a sentence when I was sitting on their comfy couch talking to him!

Just as we were leaving Jen's Wednesday morning, this dizzy gal with the numb feet took another fall. Fortunately, the steps were shallow, the fall was onto their wooden deck and I landed on my side not my bum. Having shoes on spared my ankles from serious sprain. There was some hyper-extension, pulling and bruising to the bottoms of my feet. Jen quickly got an ice pack and ace bandage and I was able to ice and elevate as we drove back to Stanford. Walking was difficult that day, but I managed with slow, rather stiff strides. I was able to ice and elevate again that evening when we visited our friends in Mountain View for dinner and then again in the motel that night and Thursday morning. Felt much better on Thursday, although still a bit sore.

After the fall, it was back to Stanford on Wednesday morning for appointments with various people in the transplant department which lasted from 11:30 to 3:00, again leaving us with a "lick and swallow" lunch just before my check in time of 3:30 for my next MRI. My sedation was given earlier this time and my procedure a little delayed so I was really relaxed. My tech was very nice but not quite as talkative. It did help both days that the initial images took about 30 minutes then they brought me out for an IV of contrast for the final 10-15 minutes of images.

Thursday morning at 8 am we met with the Interventional Radiologist and his nurse coordinator. There was another compression fracture found in the upper lumbar region and there was evidence of small patches of myeloma throughout my bone marrow. There are also degenerative discs which could be caused by aging or as a result of all the compression fractures. He didn't want to do anymore procedures right now so that I can continue in treatment without further interruption. There have been too many interruptions over the past 6 months which has not afforded the consistency that is needed. We talked about options for pain control and he highly recommended some specialized physical therapy. This is something I've been asking about for several months. His nurse coordinator will include this info in her follow-up letter to my local oncologist so it can be ordered. There is an excellent physical therapist in Anderson, so am hopeful he will have the expertise that is required for my situation.

In answer to my questions, the radiologist explained why he preferred vertebroplasty over kyphoplasty. After much research and many tests, they have found that vertebroplasty gives a better long term result for myeloma patients. Also, the two different processes create very different environments in the vertebrae. Even though the inside of the vertebrae have thinned out significantly to the point of collapse, there are still bony structures there providing some support. This is an important consideration when repair is made in a myeloma patient. Vertebroplasty fills in all the space around the bony structures giving them added support and filling all of the vertebral cavity. It is an easier procedure and doesn't require as much sedation. Kyphoplasty is a much more involved procedure requiring a larger incision and more sedation. A balloon is inserted into the vertebra to make a space where a "ball" of cement is then inserted (that's what it looked like on the MRI today). It doesn't completely fill the space leaving the outer edges still vulnerable to collapse and when the balloon is inserted it crushes all of those important bony structures.

Before we left we made my follow up appointment with the neurosurgeon. Between his schedule and mine, I won't be seeing him until March 5.

We are still processing all of the info from the meeting with the transplant department and have a notebook full of information we are to read through, so I will share more about that in a later post. In the meantime, you can continue to pray for us as we make this decision.

Thanks to your faithful prayers I conquered the tube!!

Closer to the earth

2011-12-29T16:13:00.000-08:00

The New Year is nearly upon us and with it brings multiple appointments at Stanford the 1st week of January.

The pain and muscle spasms in my back and around my ribs have increased over the past few weeks. I'm feeling like the earth is rising up to meet me, which was verified by a loss of another 1/4" in height. Finally reached the nurse coordinator for the neuroscience department at Stanford and explained my new symptoms. This generated a number of phone calls and scheduling. An MRI of my thoracic and lumbar spine is scheduled for next week. This will not be in an "open" machine, but in the "tube". Their opinion is that the open MRI's are not as accurate and they never take images of the lumbar spine in open machines. All of my previous MRI's done locally were done in open machines and maybe that explains why there wasn't more concern over the one done last August - it wasn't showing all that was happening.

So now I face the "tube" and it isn't the TV or anything related to the internet. Closeness does not begin to describe the environment and closeness is not a friend of claustrophobics! It will take 1 1/2 hours for them to take their images. In addition to a request for sedation, it has been determined that it would be best to break it into 2 sessions, each lasting about 45 minutes. Since they are trying to get me in as soon as possible and with another holiday weekend ahead, these 2 sessions will have to be on two different days. The first will be Tuesday afternoon and the second will be Wednesday afternoon, January 3 and 4. I will enter the "tube" at 4:30 each day and covet prayers for the closeness of Christ and not the closeness of what surrounds me!!

An appointment has been scheduled for 8 am Thursday morning, January 5, for possible back procedure if more repair is needed after the MRI reports are read.

I'm thankful these appointments could be made around my already scheduled appointment on Wednesday, January 4, with the transplant department. These appointments are scheduled for 11:30 am and 1:00 pm. Wednesday will be a long day.

We will probably travel back and forth some to Jen's which is a little over an hour south of Stanford. However, Wednesday night will probably be spent at a nearby motel so we can easily get to the 8 am appointment on Thursday morning. When you are traveling around a large metropolitan area, commuter traffic always has to be taken into consideration.

My initial dose of Cytoxan was postponed until Monday, December 27. I was glad I didn't have to deal with it over the Christmas weekend so I could enjoy my family. Part of the reason for the delay, however, was due to a bad burn I got on the inside of my wrist 2 weeks earlier. It was healing up just fine until I had the second dose of Velcade on the 22nd. It looked infected and angry on Friday morning, so a trip to the walk-in clinic provided antibiotic ointment and pills, and a culture done to rule our Staph and MRSA infections. My local oncologist wanted me to give it a couple of days to respond to the medication before taking the Cytoxan. It is healing up nicely now.

I got along fairly well with the first dose of Cytoxan by following all of the suggestions given by the pharmacist. Over the past few days there has been a noticeable increase in my neuropathy. My feet are very numb and the numbness is traveling up my legs to my knees now. The numbness in my fingers has increased and there is some numbness in my face and lips. Everything is still functioning, although, I am noticing that my legs aren't quite as reliable. My hair was already thinning from the Velcade, but today I noticed that it is breaking off close to my scalp in places. Tomorrow is an appointment with a wig specialist.

Your words of encouragement and prayers on our behalf sustain us! We pray blessings will be returned to you for your faithfulness to us.

Cytoxin for Christmas

2011-12-21T08:08:00.000-08:00

Finally back in treatment. Began last Thursday, the 15th, with the same drug I've been on, Velcade. This week the new one will be added, Cytoxin; an old standby that is used for many different types of cancer. The new drugs are more targeted for specific cancers. The older drugs are more generalized causing the well-known side effects of nausea and hair loss. I've escaped both of these side effects with only minimal problems. However, I have had and continue to have, a great deal of difficulty with neuropathy. We're praying I will feel well enough following treatment Thursday to enjoy Christmas with our family.

The last few weeks have been a difficult time of waiting and wondering how much more damage the cancer was doing to my spine without treatment. My Stanford doctor even called again the first week of December to see how I was doing on the new treatment. I think he was a little surprised that my local doctor was not going to begin treatment again until he saw me and that appointment wasn't for another 2 weeks, December 15.

Following last week's treatment, I began to have a lot of muscle spasms and pain in my lower back and had the feeling that the muscles in my upper back were being pulled down. There was also an "icy-hot" feeling in the upper muscles. We were concerned that this might be a sign the lumbar vertebrae were beginning to collapse; or, this weakness could have been a side effect of the high dose steroids I have to take on treatment day, as I have improved some. However, I do lay down a couple of times a day to let those muscles relax and I have been doing some improvised traction on my back. I lay flat (as flat as I can) and pull on something with my hands while Steve gently pulls on my ankles. This seems to relieve the pain and spasms almost immediately.

Our household is a busy place as we prepare for Christmas and I try to pace myself. Johanna is home and Jen and family arrived last night. It's agonizing not to be able pick up and hold my little granddaughters! But I have strict limits on lifting.

Many blessings to our family and friends as you celebrate the birth of our Saviour, the One whose Hand I cling to.

A New Perspective

2011-12-02T09:18:00.000-08:00

My local doctor and my Stanford doctor finally finished their game of phone tag this morning and had a conversation regarding my condition and treatment options. Following their conversation, my local doctor called me. It was stated again how difficult it is to track my particular form of myeloma. An appointment has been made for an interview with the stem-cell transplant team at Stanford for consideration of this procedure. I was initially told I had questionable genetic markers for success and that I would probably do just as well battling the disease with all the new drugs that were being developed. I guess in the past 3 1/2 years, there are a couple more markers they now look at and those are both on the positive side for me. It is a grueling procedure taking several months and then I would have to be extremely careful until my system rebuilt itself. Also, I would have to have all of my innoculations again, such polio, whooping cough, diptheria, measles, etc. It is unknown how long it actually takes each individual to get back to "normal". One thing we do know, is that you never completely get rid of this type of cancer since it is located at the stem cell level in your bone marrow. So eventhough you have really strong chemo to try to destroy as much of the cancer as possible before they harvest the stem cells, those stem cells may still have residual cancer. It is not a cure; it just buys time. We will have more information after our initial appointment with the transplant department on January 4.

In the meantime, I will see my local doctor on December 15 and he will go over the new treatment plan which will commence as soon as possible. This will reduce the cancer load and keep me stabilized for now.

I have had good recovery from the repair done on the 2 thoracic vertebrae the day before Thanksgiving. I am out of the back brace and able to function more. I still have 3 fractures in the lumbar area that need attention and I do want to have them repaired before I lose anymore height. The discomfort and pain from them is not as severe, but it does increase the more I'm on my feet during the day. It is really strange adjusting to a shorter height after a lifetime being a particular height and your world revolving around that perspective. Now the table top is closer when I sit down; the kitchen counter is higher; I can't reach things in the cupboards that I always could reach before; realizing when you drive the car that you have to adjust the mirrors from where they've always been; your clothes fitting differently.

Tomorrow is our monthly Myeloma Support group meeting. Two years ago this month the group began with 3 people. There will be 28 of us there tomorrow. We are having a social time this month so we can get to know one another better as individuals not just cancer patients and have an opportunity to meet spouses or caregivers that don't always attend our meetings. The coffee shop where we meet will serve a light brunch and I've been busy planning some "get acquainted" games today and arranging some Christmas decorations for the room. Through a contact with one of the pharmaceutical reps, I was able to get a sponsor for our meeting who will pay for our food.

Your prayers sustain us especially when we have difficult days. We feel so blessed that so many take time to remember us in their thoughts and prayers. I often wonder how people who do not have the security of faith in Christ deal with life-threatening events.

A day of Thankfulness

2011-11-24T09:21:00.001-08:00

We received a phone call Tuesday morning telling us my procedure on Wednesday had been moved to 6 am. We were already planning to drive to the city Tuesday evening and spend the night, so were glad to actually have the earlier time.

The procedure on my back went well. It was a much better experience than the one done here locally in September. It went so much smoother and I wasn't given as much sedation, so recovery has been easier. The doctor who did the procedure was doing a Fellowship and was supervised by the senior doctor. He had a gentle touch and did so well. I missed talking with the senior doctor afterward as I was in the restroom dressing when he came out and talked to Steve. He said they had to use a lot of cement to fill the cavities the cancer had caused on the 2 vertebrae.

We were so thankful they would allow me to ride home that afternoon; however, I had to have the seat completely reclined and not sit upright, and Steve was instructed not to hit any potholes. :) I was released around noon, so we were glad we could get out of the city before the holiday traffic got too heavy. Although, we still hit some really slow spots. I slept part of the time and when I got too uncomfortable we would stop so I could walk around a little.

My doctor from Stanford finally called Tuesday evening as we were driving down to the city. We had a good long chat. He told me again what a difficult case I present. Not only the rarity of non-secretory myeloma, but the difficulty in tracking it's progress. In the big picture of myeloma the information they use to try to track my cancer does not adequately indicate the activity level of the disease in my body. Although I know the numbers are high for me, they are not really all that high for normal cases. There seems to have developed a concentration of myeloma activity in my spine, producing what are called plasmacytomas, or "soft" tumors in the bone. Basically, it's an area where the cancer is destroying the bone. We talked of treatment options at length and he will call my Chico doctor with instructions for a different "cocktail" of drugs to try. He has a number of clinical trials he is supervising, but I don't meet the criteria for any of them. Also, there are several new drugs that will be available next year if we can find something to stabilize me for now. We also talked about options for monitoring my condition and trying to maintain a better handle on what is going on, if that's possible.

We know that your prayers have made a difference! My procedure went well; things are no longer at a standstill; there is a plan for further treatment. Your calls, notes, love and prayers have brought great comfort. We are blessed!

We will enjoy Thanksgiving dinner at Jeremy's this afternoon with his inlaws and Johanna, who is driving home this morning. I love cooking and entertaining, but what a joy to have our kids take on the turkey this year! Jen and Jeff are cooking their first turkey, too, and have invited others from his work that cannot be with their families either. Jesse and Lyn are in Portland with her family.

May we all find many things to be thankful for today and everyday throughout the year.

C..R..U..M..B..L..I..N..G

2011-11-18T19:21:00.000-08:00

I have had good intentions of posting updated info every day this week, but each day has presented new situations so rapidly that I kept thinking I'll wait until things have solidified. However, that hasn't happened yet, and things have continued to get worse each day. So here is where things stand for now.

My CT scan and follow-up appointment on Monday with the neurosurgeon at Stanford was the first disappointment this week. The cancer has completely infiltrated my vertebrae and there are 5 more compression fractures causing me to lose another 1" in height. My vertibrae are quickly crumbling. Two need to be repaired right away as they are in the thoracic area and I already have one vertebra that collapsed prior to the kyphoplasty done in September here locally. This collapse has left me unable to stand up straight and has caused other problems with muscle spasms and difficulty with my throat (swallowing and vocal cords) due to the misalignment. So, on Wednesday, the day before Thanksgiving, I will be at Stanford having additional kyphoplasty. That is the plan anyway. My lab work done last Friday at chemo in Chico is such that my numbers may not be adquate for them to do the procedure. Until further repair can be made to my spine, I have to continue to wear the back brace full time and be especially careful.

I was supposed to receive a call from my oncologist at Stanford this week regarding my current state of affairs, but he never called.

I was scheduled for chemo in Chico today and saw the oncologist there prior to my treatment. My cancer numbers had gone up so dramatically and my blood counts dropped to the point that he said the current medication and dosage had lost its effectiveness and there was no point in continuing. He also has tried to make contact with my doctor at Stanford this week and his calls were not returned either. He assured me he would talk to them first thing Monday morning to see what their recommendation is for further treatment. He said alternate treatment must commence a.s.a.p. My blood counts are already really close to the low threshold of viability for treatment and the cancer is increasing rapidly. His recommendations would require use of older type chemo drugs and several days in the hospital during treatment. There would be hair loss, nausea and other more severe side effects as was seen in earlier days of cancer treatment.

He also gave us the name of a doctor at UCLA that only treats myeloma patients and made the suggestion that we might want to see him for a second opinion if we weren't opposed to travelling that distance. Also, there is a new drug that is supposed to be approved mid-2012 and there are some places that early access is available. He might be one of those locations as there are now several available in S. Cal.

In the meantime, Steve & I are trying to prayerfully process all of this latest information and waiting to talk further with our kids until we we know more about what the future holds at this point. Today (Friday) was Holly's and Ty's birthdays and we plan for a family celebration within the next days. We need some happy times together without more discouraging news for them. Holly just returned from her Grandma's funeral who died of cancer last week. We want to delay putting anymore stress on their little family as long as possible.

I am not saying anything to my choir families either at this point until I know exactly what is going to happen. I do have a couple of people who I can call on to finish out the semester and the concert if I am unable to do it.

All I can say is we need a miracle!

Who's covering my back?

2011-10-25T10:54:00.000-07:00

Saw the neurosurgeon at Stanford yesterday. He needs a post-procedure CT scan to adequately assess the current condition of my vertebrae. This is scheduled for Nov. 14 at Stanford. The results will be available to him within a couple of hours, so we will see him the same day. The options are: 1) If there is room to add more cement to what was previously done, he will do another kyphoplasty; 2) If there isn't room, there is the option of spinal reconstruction surgery; 3) live with the pain, muscle spasms, back brace and limited mobility.

Spinal reconstruction would be major surgery. It would only be done on the worst fracture, which is the thoracic #7. It is the one that also has the disc bulging dangerously close to the spinal cord. The surgery would involve removing the damaged vertebra and replacing it with a support structure of some kind. Then there would be a small rod attached to each side of the vertebrae above and below it. I'm assuming this procedure would also remove the disc. It sounds a bit scary with all that activity around the spinal cord! He did say that many of the myeloma patients he sees opt for living with the pain.

We continue to pray over this situation with my back - for healing and for wisdom with decisions regarding procedures. It seems our life is consumed again with doctors, tests, procedures, treatments and many miles in the car going back and forth. We're both sort of in a daze again and are comforted by the knowledge that we are being covered in prayer by our loved ones.

Precious and Precarious

2011-10-12T15:23:00.000-07:00

Our precious new little granddaughter, Evelyn Grey Hatcher, was born October 6. She was 8 lbs., 9 oz. and 21 3/4 inches long. She shares her birthday with her Uncle Jeremy and her second cousin Marcus. This was also my Mother's birthday.

On Tuesday, October 4, just prior to Evie's birth, we saw my doctor at Stanford. He was a little taken aback at my condition and inability to do much following the Kyphoplasty. Before we even arrived home, there was a message on the answering machine for an appointment with their top neurosurgeon and for an updated PET/CT scan to be scheduled prior to that appointment.

The day after Evie's birth, I had chemo in Chico. The treatment also included an IV bisphosphonate called Zometa. With monthly infusions, it is hoped that over time, this will help rebuild some bone in my vertebrae. We saw the Oncology Nurse Practitioner prior to my treatment. We really liked her and were told that we would rotate month to month between seeing her or the doctor prior to each round of treatment.

After chemo, we drove all the way back to Redding for the post-procedure visit with the Interventional Radiologist. The procedure was successful in his opinion for stabilizing the fractures. However, he was concerned that my spine might have more lesions from the myeloma and the possibility of more fractures. Also, the disc just below the thoracic vertebra that was repaired is bulging inward and is right next to the spinal cord. If it bulges anymore or ruptures, it could ultimately cause paralysis. Therefore, I cannot lift anything over 10 pounds, and that only if it is lifted a certain way. He wants me to try going without the back brace part of the day, but it is extremely difficult as I am continuing to have a lot of muscle spasms just below the rib cage. He actually wanted me to get a much more restrictive brace to wear for those hours I am to wear it. We have decided not to do anything further until we see the neurosurgeon at Stanford. The only physical therapy that he has recommended is walking and moving my arms. So, I am continuing to do choir as it meets that criteria and I can't do much else!

We are grateful for our friends and family who continue to uphold us in their thoughts and prayers.

Disappointment

2011-09-25T12:25:00.000-07:00

It's now 9 days following the procedure on my back and I've had no improvement. I was told prior to the procedure that if I didn't wake up out of pain it would happen within 72 hours. The fractures were stabilized, but enough height was not recovered for me to gain any relief. I continue to experience all of the same symptoms as before. The doctor told me to wear the brace every waking hour. But a follow up call to his office at the 5 day point resulted in a conversation with his nurse practitioner who told me not to wear the brace all the time. However, after a few hours without it, I'm in so much pain and the muscle spasms are so severe that I have to lay down for several hours until they subside. Wearing the back brace at that point provides some relief. So, I wear the back brace quite a bit. Also, he told me to take ibuprofen round the clock for several days. I've tried all that and I can't take it while I'm in treatment. The next suggestion was Valium to help the muscle spasms. Well, that puts me to sleep, which laying flat and sleeping gives relief without those meds. If I take it during the day, then I'm sleepy. I am very limited with what I can do. Steve is having to do more to help me. Consequently, I am quite discouraged.

This week is our anniversary - a gift of another year to share our lives. The first week of October is busy with doctor appointments, IVIG, and chemo. Will know at that time if chemo dosages will increase due to how low my blood counts are (white, red and platelets) which was discovered on pre-op labs.

The bright spot in our lives right now is the anticipated birth of another granddaughter.

Thank you for your interest in our lives and your continued prayers.

Vertebrae Repair

2011-09-16T04:40:00.000-07:00

Our trip to Minnesota is a happy memory now. We always enjoy our time there. The weather was beautiful the entire time we were there. My flights were smooth and security agents were pleasant and screenings went smoothly, too. Although, they had to check my ace bandage on my sprained ankle for bomb residue. Sprained ankle? What? I slipped on the last step of some stairs and landed on my bum after hyper-extending my foot. Many bumps and bruises, but the worst injury to the ankle is on the top where I heard the terrible sound of ligaments stretching and tearing as I fell. Twenty four hours of staying off of it and lots of ice greatly improved the healing process. Once the swollen bruise on the bottom of my foot improved, I was able to carefully walk with the ankle wrapped in an ace bandage. Being ambulatory and not needing a wheelchair certainly did make it easier at the airport for our return flight this week. I did, however, miss the first event of Steve's reunion.

This morning is the procedure on my back. Things have become a little more complicated since my fall and the recent bone density test showed my bones are healthy and there was no indication of osteopenia or osteoporosis. Therefore, the compression fractures are from myeloma activity which leaves the unknown issue of how compromised the bone structure has become from the cancer and now whether there is further injury from my fall. My phone conversation with the Radiologist on Monday left me with these haunting words, "Hopefully, there is enough bone structure left to adhere the cement and have a successful outcome." The doctor said he would take a look during the procedure to be sure there weren't new fractures from my fall. He will also definitely take a biopsy. I'm praying it is done properly and is an adequate sample. Every bone marrow biopsy I've had done in Redding has had to repeated at Stanford due to some problem with the sample taken here.

Steve arrived home last night after riding 500+ miles a day to get here in time for my procedure. Jesse and Steve rode together to Butte, MT. Then Jesse went north to Canada to visit one of his college roommates and Steve headed south for home. They had some windy, chilly weather the first day, but stayed just ahead of the inclimate weather the rest of the trip. Steve arrived home last night even though he wasn't expected until tomorrow and arrangements had already been made for my friend (who is a nurse) to take me and stay with me until he returned home. He was so tired when he went to bed last night, that he asked if Kim could still take me in the morning and he would come up to hospital a little later.

Will report the outcome in a few days, but will sign off for now as it's almost time to leave.

Your prayers sustain us and bring hope and peace in the midst of this ongoing challenge of dealing with cancer.

Scanning and Testing this and that continues

2011-08-30T16:30:00.000-07:00

It seems I am seeing many doctors again and having tests and evaluations done again that were completed during my initial diagnosis phase. Follow-up to assess my current status. Today was an echocardiogram to monitor the heart murmur that was discovered which is actually the beginning of a leaking valve. Very minimal at initial diagnosis. Need to determine if there has been a change or if it is stable. When I am able in a few months, I will have another stress test, also, for my heart.

Also, today was a DEXA bone scan which will determine the mineral content of my bones. It will tell how extensive the osteoporsis is that was discovered in my spine during assessment for fractures with MRI and CT.

I am scheduled for a procedure called kyphoplasty on Sept. 16, just a few days after returning from our trip to Minnesota. I cannot have any chemo related drugs for 2 weeks prior or 2 weeks following this procedure. So, the next round of chemo will begin Oct. 7. Also, that week on Monday, Oct. 3, I am scheduled for my monthly IVIG. Tuesday I will see my Stanford doctor. Thursday is choir practice. Friday will be chemo in Chico and I will see my new doc there that day, also. AND, that is the week our new little granddaughter is due! I'm sending her my schedule to see how we can coordinate our timing! :)

I'm assuming the insurance has approved continued IVIG treatments as the orders were sent to the hospital from my doctor and they called me to schedule for this Friday, Sept 2, the day before I leave.

Yes, Minnesota. Steve's 50th high school reunion. He and Jesse left on their motorcycles yesterday and are having the great adventure of the open road and male bonding it provides. Check off one item on Steve's bucket list. Next will be an item on my bucket list. Lyn, Jesse's wife, and I will fly out on Saturday for 10 days. Yes, the radiologist told me I could make this trip. He said I might as well enjoy myself while I'm waiting on my procedure. I was given lots of instructions or maybe I should say restrictions. Looking forward to seeing all our Minnesota family in a few days!

My summer wardrobe was all in place to make packing for our travels an easy task and often fitting into a carry on bag. However, the articles of clothing required for my brace have complicated that task and I've been trying to shop and figure out what I have that will give me the layers I need and yet not be too warm. But it's hard not to be warm with shirt, the brace and an overshirt. The brace itself is quite warm to wear. After the heat they have experienced this summer in Minnesota, it's hard to know what the weather will do the first 2 weeks of September. I don't think a carry-on is going to be happening. I can't lift much of anything anyway and am grateful for Lyn's assistance with this trip. Not to mention how much I will enjoy her company as we travel.

I was grateful to my friend Barbara who drove me to my most recent Stanford appointment last week. We yakked non stop all day! As we were visiting with the nurse during my treatment she asked if we were going shopping and we replied "Yes! At the Music Store!" Barbara was the director of the choir when I was the accompanist. She now directs her church choir and was glad for an opportunity to shop for music for her choirs. We had a great time and it was a day that blessed me at a time I've been a bit discourage with the recent turn of events with my condition.

Thank you for your cards, calls and emails of encouragement and reasurance of prayers on our behalf. They truly encourage and bless us! Today's post will give you prayer focus in the weeks ahead. Thank you for your faithfulness to us!

2011-08-19T18:51:00.000-07:00

Early Tuesday morning found me flat on my back on a hard surface listening the clunk and clank of the magnet in the MRI machine. An agonizing hour later, I was moved to the CT scan for further study. My back was really sore for a couple of days afterward.

We picked up the reports on Thursday morning so we would have them for the new hematologist we were meeting in Chico on Thursday afternoon. We are very pleased with this new doctor and grateful to Stanford for recommending him. He was quite distressed over the condition of my spine overall, not just the fractures. The good news is the weakened bones are from all the drugs I've had to take for the cancer and not from the cancer.

I will make one more trip to Stanford on Monday for another dose of chemo. Mid-September everything will be set up for me to begin my treatments in Chico under the supervision of my new doctor there.

Early next Tuesday morning, I will meet with the Interventional Radiologist and see what he recommends for my fractures. We are most anxious to hear his opinion.

I got along pretty well with my treatment this week. Fatigue has been an issue and yet I haven't slept well.

Today I met with my immunologist. He is sending an order to the hospital for the monthly IVIG to continue and we're hopeful the insurance company will give approval for another year. He has been a key member of my health care team. He not only understands my need to be a "germophobe", he encourages it as a means to maintaining my health.

More tests are in the near future: Bone density scan, extensive and specialized blood tests, follow-up with cardiologist to verify that my heart is managing all the chemo and drugs ok.

My address book truly is full of names that all end in MD!!!

We are so grateful for the continued prayer support for each need as it arises.

Hands Free Straight Jacket

2011-08-12T15:07:00.001-07:00

I received the results of my x-rays on Wednesday morning and they revealed a sad tale regarding the condition of my back. There are 2 compression fractures in the vertebrae and other issues developing as a result. I am experiencing more pain and discomfort. My primary doc referred me to an Interventional Radiologist. I was seen by the Nurse Practitioner on Thursday afternoon for a preliminary consultation. Am scheduled for an MRI and, depending on what the MRI reveals, possibly a CT scan, also, on Tuesday morning next week. They do not have an opening for me to see the specialist for 2 weeks, but they are going to try to find a spot to squeeze me in next week. I was told they are going to have me see their best doc for this type of injury.

In the meantime, I was sent to an orthotic appliance business (who are people we know from church) to be fitted for a back brace. Any of you ladies remember corsets? Well, my brace is quite similar, only much more complicated to get on and off. It fits over the top of my hips and goes all the way up my back with straps that go over my shoulders. There are all kinds of straps across the front that have to be tightened in a particular order. It does give me a lot of support, for which I am most grateful. However, the fracture in the middle of my back constantly reminds me it is there by giving me a little stab of pain whenever I move a little too much. The muscles all around my ribs and chest are tight and tense from trying to hold me up.

On Monday, we make the drive again to Stanford to begin the next round of treatment. We'll return there again on the following Monday.

The Radiology specialist is concerned about the steroids I'm taking as part of my treatment. Not only do they contribute to bone loss, but they also inhibit the bone from healing. I suspect there is going to be a request for the steroids to be discontinued temporarily. I don't anticipate this being a problem as there have been recent clinical trials where they are experimenting with my particular chemo drug as a stand alone agent without the addition of steroids.

So, prayer warriors, you have your assignment this week!!

Deep in the heart of Texas

2011-08-06T17:10:00.000-07:00

We just returned from a trip to Texas to attend the yearly Suppor Group Leaders' Training with the International Myeloma Foundation. It was a really good conference this year and we felt we came away with lots of encouragement and fresh ideas to assist us in leading our support group here. Our group met this morning and our former oncologist was in town to speak to us. It was a really good meeting and we all loved getting a hug from our doctor that we will never be able to replace. He has a genuine concern for each of us as a whole person and not just a cancer patient.

Following the conference we took another flight farther south in the state and spent a few days with my youngest brother, Hal, in Corpus Christi. Two of his daughters came down from Austin while we were there and it was a grand reunion for all of us.

I received two treatments at Stanford prior to our trip to Texas. I am receiving half-dose of Velcade once a week for 2 weeks; then three weeks off. In addition, I take 20 mg. of Dexamethasone every week and an anti-viral medication twice a day. Velcade leaves me very susceptible to shingles and with my particular type of myeloma, I am not able to have the vaccine to prevent it. Within hours of my first dose of Velcade, the neuropathy in my feet increased. It is hoped that this reduced schedule of treatment will keep the neuropathy from increasing too dramatically and reduce the cancer load at the same time.

In June, I had several acupuncture treatments in my feet that seemed to improve the still lingering neuropathy from previous treatment. I plan to continue with the treatments this month and see if they will help.

Injured my back in June and it is still bothering me quite a bit. Acupuncture and chiropratic treatments have helped, but there is some concern that the injury could be cancer related. Had an x-ray Friday morning, but am told by Stanford that I need a CT scan. Medicare says x-ray has to come first. Have had some improvement, but can still tell the area of the injury is very tender and it wouldn't take much for the pain and weakness to return. We are praying my back will continue to improve and there won't be any damage to bones or discs found.

Had my last IVIG infusion yesterday and am prayerfully waiting to see if they will be approved for another year. They are my lifeline! Without them, I wouldn't be able to stay healthy or have any quality of life. Please join us in praying that they will be approved quickly and easily.

Now to the doctor issue. My Stanford doctor wants me to see a Board Certified Hematologist and I am unable to get into any in Redding. We are really short of oncologists here, and I seem to get placed with whoever has room to take me. So we are having to go a little farther afield. I have an appointment with an oncologist in Chico the middle of August. It is a doctor that my Stanford doctor knew about and has sent a referral there for me. In the meantime, I will need to make 2 more trips to Stanford for my August treatments. Hopefully, I can work in a trip a little farther south, too, and visit that little magnet named Miss Lilian!

Prayer needs: IVIG infusion approval, neuropathy will improve, will find oncologist closer to home, my back will heal on its own.

No news; now, not so good news

2011-07-13T07:28:00.000-07:00

Spring brought a nasty virus to our house, which Steve and I battled for several months and several rounds of antibiotics. Steve has recovered and is now battling Plantar Fasciitis on his foot. My sense of smell and taste have not returned and the ENT doc says the nerves may have been destroyed from the virus since I am so immuno compromised from my cancer. However, there may still be recovery since it can take up to a year. A CT scan next week will tell us if I still have infection in my sinuses and if they are clear, the nerve damage issue will be the diagnosis.

A nasty virus also caused my old computer to finally give out. Of course, this happened right after we had done an upgrade and some repair. I am still trying to figure out all the new programs and extra security measures on the new computer. Change is always difficult for those of us who remember the days before the pocket calculator!

In spite of what ails us, we have tried to continue our routine of watching our grandson, Ty, a couple days a week, short trips to visit family and attend weddings and funerals, and my continued work with the choirs.

My local oncology doctor has closed his practice and is leaving the state for an opportunity to care for our Vets at a VA hospital and to teach at a Medical school. His patients are all really happy for him and sad for all of us. Since there is already a shortage of oncologists in our community, this flood of patients that are in treatment and need to transfer quickly and smoothly to another oncologist has been a difficult time. It was the topic of conversation at our last support group meeting. I am possibly going to return to one of the docs I saw previously and hope that things are better organized in her office than they were last time I was there.

So, that brings me to the info you all want to know - what's happening with my cancer. Well, after being monitored closely these past 2 1/2 years since my last treatment, it has reached a point that it is increasing rapidly. Treatment now must commence a.s.a.p. This has been complicated with all of the transition of doctors. We have an opportunity to see a doctor that was reccommended in Chico (an hour drive) and have to decide whether we are going to stay in town or travel a little farther. We're praying about an option of taking the time to consult with each doctor before we make a decision; which would mean that the first round of treatment would need to commence next week at Stanford. My Stanford doctor wanted my treatment to begin within 2 weeks of my last visit with him on June 28 and we're moving past that point already.

I've lost two aunts and an uncle in recent months. With their passing, all of my mom's siblings are gone now and the end of that generation causes reflection. It seems that death causes us to think about life, not just life after death, but the here and now. We rejoice in the blessing of their long lives, but we are prayerfully walking through serious illness with friends who are younger than we are and with friends whose son, in his 20's, is in a coma from a brain anuerysm. Even if you live to your 60's or 70's or 80's or even 90's, you realize how fleeting life really is. I will never forget a small plaque that hung on my Grandmother's wall: One life will soon be past; only what's done for Christ will last.

Now that I am returning to treatment, I will try to be more diligent about posting updates. I'm not sure how many are still checking this blog since I have not been consistent in recent months.

Thank you for your faithfulness to us. We covet your prayers as we negotiate how to get treatment started right away and finding a new oncologist.

Gettin' the Lead Out

2011-01-11T08:33:00.000-08:00

The holidays have whizzed by with a flurry of activity as our table was set for many places at Thanksgiving and Christmas. Here it is January already and I haven't even started my yearly New Year's resolution diet! I'm still enjoying delicious candies prepared for us as gifts at Christmas.

December's blood work only momentarily dampened our spirits as it revealed my blood counts are beginning to get quite low and the cancer numbers are increasing; the excitement of preparing for Christmas being foremost in our thoughts. However even more caution is required now to remain healthy. My impaired immune system combined with low blood counts leaves me quite susceptible to respiratory allergies and those easily go into a sinus infection, even without having a cold first. I've been on antibiotics twice in recent months for sinus infections. I also tire more easily so naps and rest times during the day are becoming more common.

After reviewing my lab reports, my Stanford doctor has determined that we do not need to begin the next round of treatment quite yet. We will see him in March, as planned. Plans for any travel are on hold until after my appointment with him and a time table for additonal treatment has been decided.

Had a wonderful fall semester with my choirs, adding a third choir this year. We had a great concert the week before Christmas with approximately 400-500 in attendance. I look forward to continuing for another semester, although we won't begin unil February, which gives me the month of January to recoup from the busy holidays and prepare for the next semester.

From a totally unrelated incident, I had to have a "procedure" on my right thumb. I often don't sleep well at night, so I read or do a puzzle. I was doing a puzzle one night back in early October and fell asleep, as I often do, with book and/or mechanical pencil in my hand. On this particular night I woke with a jerk in a short while and the pencil flew out of my hand, into the air and when it came down it landed in the cuticle next to my right thumbnail. It went deep enough that it stood up and didn't fall over from it's own weight. I pulled it out of my thumb expecting it to bleed, which it didn't. At closer inspection, I noticed a thin blue line under the skin. Well, I couldn't get it out, soaking in Epsom salts didn't help, x-rays didn't show anything, antibiotics stopped the irritation and infection, was referred to an orthopedist whose Physician Assistant said "we have to schedule a procedure", which had to be scheduled soon after my monthly IVIG infusion so my immune system would have some clout. The day finally came last week and a 1/4 inch piece of lead was removed and I'm now sporting 3 stitches. It has limited what I can do this week, but I'm so glad to be at the end of this ordeal. Leaving it in my thumb was not an option as it was quite tender and a large callous was forming around the lead.

As we continue the struggle of dealing with my illness, we are finding more friends and family who are beginning to struggle with health issues, also, some life-threatening in the immediate future. Are we all getting older?! It is a constant reminder that He holds our life in His hands, He knows the number of our days and prayer for one another is a worthy occupation!

Hallelujah, not Halloween

2010-10-31T18:56:00.000-07:00

The world is celebrating Halloween today. I am celebrating the bravery of Martin Luther in setting in motion the Reformation. His declaration that God's forgiveness cannot be purchased, that God's grace is a free gift, liberated people to live by faith in God, not in their Priest or Church.

I am also celebrating each day that I continue in good health. That is possible due to God's grace, the prayers of the Saints (that's you all!) and the wonderful medical care I receive from my doctors. My test results in September were encouraging. My bones are still healthy and strong. My blood counts were fairly good. My immunoglobulin proteins are beginning a slow decline - a sign that the cancer is still active beneath the surface. However, I have been approved for another year of IVIG infusions monthly (intra-venous immuno-globulin g). This boosts my impaired immune system making it possible for me to have a somewhat normal life; although, I continue my practice of being a total, obsessive germophobe!

The next step in my ongoing care are blood tests in December. If those are ok, I don't have to return to Stanford until March, which will be followed by an appointment with my oncologist here.

It has been a busy fall. My choirs began again in September and, at the beginning of this month, I added a third choir. I do come home very tired on Thursday afternoon, but very happy that the Lord allows me to continue this ministry.

Our little Ty will be 3 in a few weeks. I mark my survival by his years. He was born during the beginning stages of my diagnosis and treatment. I was so ill, I wondered if I would live to see his birth. Little Miss Lilian is already 7 1/2 months old. What a joy it is to know them and I pray the length of my days will be such that they will know me.

The Fan Man

2010-09-01T15:06:00.000-07:00

Our travels are over for the summer and we're back to our busy routine at home. Our little Ty-phoon continues to be with us several days a week when we are home. He is a busy little boy and talks constantly. He loves turning on the fans in the house and that has been his first order of business when he arrives. He will be disappointed when we put them away for the winter and will ask constantly "where did fans go?" We also enjoyed a recent visit from little Miss Lilian and her parents. Love hearing her little coos and giggles.

We had a wonderful time in Colorado. We got to do some sight-seeing, visit with family and attend a beautiful wedding for Steve's nephew. Another highlight of the trip was attending the Sunday morning service at the Air Force Academy's unique and beautiful chapel and hear their beautiful Moller Pipe Organ. Our travel in the immediate future will be to Stanford. I'm scheduled for a PET scan September 10 and will see my doctor there for results on September 20. I won't be able to be around Lily for a couple of days after my PET scan, but we are making plans to drive the extra hour south of Stanford to visit sometime in September. I will see my doctor here on September 28 with all of the news from Stanford.

I still haven't gotten to the lab to get my blood work done, so have no updated info at this time regarding my blood counts. I know I really should be monitoring them a little more closely, but a bit of ignorance has been blissful for a short time.

Right now, I am preparing for our Myeloma Support Group meeting on Saturday and for Choir registration next Thursday, the 9th. Then it will be a busy week as I determine the size and voicing of each choir and start selecting music to fit. A challenging but enjoyable process covered in prayer.

We appreciate the blessing you are in our lives and pray those blessings are returned to you in many ways.

IMF Leaders Summit

2010-08-10T14:28:00.000-07:00

We had a great time on our trip to Texas. Got to see family there and along the way (my dad, younger brother, nieces and great neices) and enjoyed being tourists for a week before our conference began. The International Myeloma Foundation Conference for Support Group Leaders was so helpful and inspiring! We made lots of new friends and came home with ideas to help us as we lead our local support group. There were several pharmaceutical company reps there, too, who shared about the research and clinical trials they are pursuing to bring us more effective drugs with fewer side effects. When you live with a chronic and potentially life-threatening disease, it is always so encouraging to hear about the research that is being done. It is also encouraging to talk with other patients who have lived beyond the predicted years from their diagnosis.

I got just a few moments to speak with the Medical Director of the organization who is a world-renowned specialist in the field of myeloma. We were happy to learn that he will do a private consultation either in person or by phone after you have provided him with all of you diagnostic records. We're talking about whether to pursue this option. He did highly recommend that I get a PET scan as I have never had one and it is becoming a standard diagnostic tool for myeloma patients. My doctor at Standford has agreed that it might be useful to pursue this. This test will be scheduled in the near future.

I saw my doctor at Stanford just before we left for our Texas trip. My blood counts were a little better than the last tests completed here in Redding; but he did say that a bone marrow biopsy was needed to determine what is really going on with my disease process. We have decided to pursue the PET scan first and then will decide about when the biopsy needs to be done again. He and I agreed that any further diagnostic tests would wait until we see what my labs show at the end of August. He also told me that my case is particularly difficult because my cancer destroys so many blood cells even before the tests show that my cancer load is very high. In a regular myeloma patient, the cancer load could be quite high before treatment is necessary. So, unfortunately, I require treatent much earlier than others. He did outline a treatment plan for me, followed by a maintenance plan. The good news was that only one drug will be used, Velcade, and no steroids. That made me happy - no steroids! There will be trips back and forth to Stanford as diagnostic tests are performed and results reviewed with my doctor there before treatment commences again. So, it's possible I'll be back in treatment before Christmas.

In the meantime, we're flying to Colorado to a family wedding this week. If you're on the same flight, I'll be the one with the mask to protect me from random germs!

Thank you for your continued prayers as we preapre to navigate this next phase of dealing with my cancer. We are so thankful for the Lord's faithfulness throughout this journey.

Infusion Confusion

2010-07-12T19:54:00.000-07:00

I owe all of you faithful followers an apology for not keeping current on my postings. I've just been too busy living! My days are full with our 2 1/2 year old grandson, Ty, here 3 days a week, or more if the other grandparents are out of town. It's fun and exhausting at the same time. I think he is even more adamant with his "NO!" than his own father was at the same age. The kitchen renovation is completed and now we've tackled the very worn carpeting. Oh my, what a job! We've re-carpeted the entire 2nd floor and the downstairs bedroom. It was completed over several days to give us time to empty rooms and move furniture around. We still haven't gotten everything put back as we've been trying to do some sorting, throwing and re-arranging. Those things are a never ending process, aren't they?! The blessings of our affluence can really become a burden.

In April, through the help of my immunologist and nurse manager at my previous IVIG location, we were able to get the local hopsital to accept me for monthly IVIG infusions and Medicare to approve the procedure for 6 months. I have been so gratefult to not have to deal with the complicated, lengthy weekly home infusion. One day a month out of my schedule is better than 1/2 day every week. It's almost time for the approval to be renewed, so please be praying that I will be able to conntinue with this type of treatment.

The spring semester with my choirs was very successful and one of the choirs was asked to sing for several additional occasions. As a result, choir wasn't completely done for me until June; but it was wonderful that the kids had more opportunity to minister to several churches and Christian Home School graduation.

We are on our way to Texas for the International Myeloma Foundation Support Group Leaders Workshop, and various other activities that we have planned for our trip. However, our first stop is a visit to my oncologist at Stanford to review my labs from recent months that show my cancer is taking hold again. Further testing will probably be required when we return from Texas and then a follow-up visit. My doctor here really wants to put me on a maintenance treatment and I know that my doctor at Stanford is not sure that it the best option for me. I'm not really looking forward to any kind of treatment; but know that until there is complete healing, it is inevitable. Lots of decisions to make in the next few months. We covet your prayers for wisdom.

Presenting Miss Lilian June

2010-04-18T15:47:00.000-07:00

Miss Lilian June made her debut on March 10. I spent several days feeding the new parents and keeping house while they got accustomed to their new addition, and learning to function on very little sleep. They came up for a few days at Easter, but that’s been a couple of weeks ago and now I’m ready for another visit. Wish they lived closer, but we’re grateful they aren’t any farther away. Jeff was able to have some family leave time and be home for several weeks, but has returned to work now.

We’ve been at home since returning from Jen and Jeff’s in March, but we haven’t been still. We’ve been re-doing the kitchen. As you all know, one thing leads to another and a few simple changes turns it all into a bigger project. So it has become a work in progress as we juggle our time around Ty’s presence 3 days a week and shopping and making decisions for the next step. New countertops, flooring and dishwasher are all complete now. Lighting has been changed in the kitchen and the laundry room. A new hood over the range with a much quieter, more efficient fan will arrive on Tuesday. Decorative tiles around the new countertop have yet to be decided and installed. But the biggest decision, or should I say indecision, has been the color of paint. We’ve been living with painted samples all weekend and I think we’re ready for the painter when he arrives tomorrow morning. It will be nice to get it all done so I can finish putting my kitchen back together.

Steve and I were sitting quietly and watching TV the other night and something dark started zipping around the room so quickly that we weren’t sure what it was. We soon realized it was a bat! We opened all the doors and after several minutes were able to help him find the exit. Then we combed the entire house looking for a window that might be open without a screen. We didn’t find any. With the house so open during all of our kitchen projects, all kinds of critters have had access to the interior of the house.

The Shasta Myeloma Support Group I started in December is growing. People are coming who saw the article in the paper, or the TV spot or found our listing on the website for the International Myeloma Foundation (IMF). The IMF offers a yearly workshop for support group leaders and we have been invited to attend the one this year in Dallas, Texas, in July. So we have planned a trip around that event and will visit friends and family in Texas and along the way. We’re looking forward to this opportunity, but also wishing we were making this trip at another time of the year instead of the hot southwest summer.

My cancer numbers continue to hold steady at this point. I am especially grateful for this time of remission and the new calling I have to minister to others with the same kind of cancer. I feel very blessed to feel so well now and to have such tremendous love and prayer support from all of you. The stories I hear from others who have suffered far greater than I and whose outcomes are not as positive, are heartbreaking. We give each other hope and encouragement at our meetings, but there are also those who are in palliative care – where the goal is making them comfortable while the disease progresses to its end, whether or not they are in treatment. I’ve spent long hours on the phone with patients at this point in their lives. I covet your prayers for this new direction my disease has taken me.

The focus of our group is support for one another and our spouses/caregivers, but my personal goal is to introduce Jesus Christ to those who don’t know Him and be sure those who do, are secure in their relationship with Him.

Where is Lilian June?

2010-03-06T18:45:00.000-08:00

Today is the due date for Jen and Jeff’s little baby girl! We’re excitedly standing by, waiting for “the call”. This past week and going forward until her birth, Steve and I plan each day with the thought that we might need to be ready to leave town.

You probably wonder what Steve and I have been doing that I don’t seem to find time to write an update. You know the adage, “no news is good news”. In January, we dug out our snow boots and made a trip by car to Minnesota to attend the wedding of Steve’s niece and to see family that we hadn’t seen in 3 ½ years. On the way, we stopped in Idaho to see my Aunt (my dad’s sister) and cousin, whom I hadn’t seen for many, many years. It was a wonderful visit and reconnection. On the way home, we visited a cousin of mine on my mom’s side in Montana. Again, a reconnection after close to 25 years. It was a great trip.

Upon arriving home, we were greeted with the news that 2 friends had died and within the next few days we received the news that my Aunt had passed away (age 91) and Steve’s uncle (age 80), both of whom we had just visited. We were so grateful for our recent visit and happy memories. However, we had to pack up again right away and head south. We took my dad to my Aunt’s service and celebrated her life with family and friends whom I hadn’t seen in close to 40 years! Am I really that old?!

What a joy, that after so many years, I’ve had the opportunity to re-establish relationships with so many people.

On our way back north, we routed ourselves up through Aptos/Santa Cruz to see the soon-to-be parents. The day we arrived they had just found a different apartment – much bigger, cleaner, quieter neighborhood and a little less expensive. So, after a week at home, we went back to Jen and Jeff’s with our Excursion and a trailer and helped them move.

In between all of this, I got 2 choirs going for the semester and have continued with the Myeloma Support Group. The article in the local newspaper ended up featuring me instead of the guy who had initially called them. He decided he didn’t want his picture in the paper as he was trying to find a job and didn’t want his face seen and connected with his name. It came out on February 4 and we had 12 people at the next meeting and I’ve had several calls from people who are in treatment and unable to attend. You can still view the article and photos online at http://www.redding.com/ then put my name “Kati Rosten” in the search box and it will pull up the article and photos. It was well written, even though some of the information isn’t completely accurate or in the proper sequence. But it did get the message out.

At today’s support group meeting there was a reporter and camera from our local TV station who is doing a story for the local news. It will air on Sunday afternoon just before the coverage begins for the Academy Awards. We had him come at the end of our meeting and, as it turned out, today there were just two of us still there. He was able to get what he needed though. But oh my…..it’s not easy talking to a camera that you know is going to be seen by many people. Our daughter-in-law, Holly, works at this station and she was instrumental in getting them to contact me. Again, the message will get out there about the support group and our type of cancer. March is Myeloma Awareness month, so it is timely that the story is being done now.

Okay, so now the real reason for this blog - my health and, in particular, my cancer. I’ve been doing pretty well, but I did catch a little cold on our way home from Minnesota that went into bronchitis. I just wasn’t careful enough in the cold weather on our way home and wasn’t able to rest when we did get home. A round of antibiotics quickly had me back on my feet.

As soon as we got home from Minnesota, at the end of January, I began my new type of immunoglobulin g infusions. They are done weekly subcutaneously (just under the skin). This is the type of immunoglobulin therapy that Medicare will pay for. It is such an inconvenience. It takes a total of 4 hours from beginning to end. I have 5 locations around my abdomen and hips where I have to place small needles for the infusion. I have adjusted to the different formulation of the blood product, but I don’t know if I’ll ever adjust to this weekly inconvenience. It is not something that I can do by myself; therefore, I rely on Steve’s assistance. Once a month, I receive a large box and the vials of the blood product must be kept refrigerated. Travel is going to be difficult now, unless we only do road trips so we can have an ice chest to keep the product cold. To travel by plane will be difficult, even though I will have letters from the doctor and the pharmacy that sends my supplies. Enough supplies for 2-3 weeks would fill an entire carry-on bag, and then there is the problem of keeping the vials cold through out the trip. However, we have some ideas how we might be able to work around this and will talk with the nurse at the home health pharmacy to see if they will be acceptable. Planning for any more travel by plane is on hold until we get this issue resolved.

On Tuesday, I see my oncologist for my 3-month check up and the blood work I just had done will be discussed. It showed that my immunglobulin proteins have improved, although some are still below normal. However, my white blood count and, in particular, my neutrophils have dropped below normal. The free light chain test is better than it was in January. Every 3 months, I have to face the realities of my life – that cancer still lurks beneath the surface. Then, I pick myself up and go on enjoying my life as much as possible, doing the things I enjoy, enjoying my family, enjoying my hubby, enjoying sitting in the same room being near each other, enjoying a trip somewhere in the car – the simple things of an ordinary, normal life.

Thank you for your faithfulness with your prayers and in continuing to visit my blog to show your interest in my life and health. I feel so loved!

Holiday Cheer

2009-12-10T10:50:00.000-08:00

Thanksgiving is a happy memory for this year and I can’t believe it has come and gone already. We had 17 people gathered around our tables for a wonderful feast to which everyone contributed. All of our kids were going to be in town this year, even though the holiday rotation was such that I would not have the family for Thanksgiving this year. We invited Jeremy’s in-laws and the grandparents, Jen’s in-laws and brother-in-law. It was a great family celebration and a celebration for me that I felt like entertaining a large group. It is what I remember from my childhood years – holiday meals with an extended family gathered around the tables.

Now it is the season of many special performances by choirs, bands and orchestras. Every night, it seems, we could attend a special event in which one or more of my former choir members is participating. It is so gratifying to know that the skills they learned in my choirs have given them opportunities as young adults. My choir concert is Monday evening so I am busy preparing. In addition to the choral preparation for such an event, there are many technical and logistical things that require time and preparation. So, the next few days will be very busy.

Christmas at our house will be celebrated on the 21st, as that is when everyone can be here. We’re thankful that Jeff has a few days off just before Christmas so he and Jen can come home, but he has to be back to work on Christmas day. Jesse and Lyn will leave on the 22nd and head to Portland to be with her family this year. Christmas morning we will go to Jeremy and Holly’s and share brunch with her family.

I continue to feel good and haven’t been sick, other than a little bit of a cold that I was able to recover from in a week. I do continue to be very careful about my exposure to people who are ill and just germs in general, wherever they might be lurking. My cancer load is still low, but is slowly climbing. I saw my local oncologist today and will return in 3 months for labs and follow-up. In the meantime, I’m going to enjoy myself and not think about it.

I’ve started a support group for Myeloma patients and their spouses/caregivers. I took flyers to all of the oncology offices and infusion centers to announce the first meeting. A local coffee shop donated the use of their meeting room, which holds 50 people. The first meeting was last Saturday and there were 3 patients and 2 spouses there. One of the other patients was in touch with the local newspaper, so a reporter attended, also. She is going to do an article about this other patient and myeloma and our support group. Good advertising! We will continue to meet on the first Saturday of every month.

Steve and I will both be on Medicare beginning in January. Medicare will not cover my IVIg infusions. If Medicare doesn’t cover something, you cannot receive the required treatment or service and pay for it out of your own pocket! So, Medicare determines what medical care and treatment I can have, how much treatment, and the quality of care.

Prayer needs: For continued good health, the issue regarding my immunoglobulin infusions, that God would use me for His Glory as I meet other myeloma patients through the support group.

As Christmas approaches, I’ve been contemplating about how Jesus so quietly, innocently and humbly entered our crazy world, but left a tremendous impact on all future generations. I wish you all a very Merry CHRISTmas and pray that you will experience His impact in your lives.

Triple Whammy

2009-10-16T09:47:00.000-07:00

Steve and I have continued to travel into the fall to attend weddings and events of friends and family, and have a couple more such trips ahead of us in November. When we’re home we have our grandson, Ty, 3 days a week. I’ve started doing choir again but am just working with two small choirs. I do have someone helping this year who I think could assume my position as director in the future with a little mentoring. This is an answer to prayer. As much as I love doing choir, I cannot continue forever, and would like to see it continue.

All of this activity confirms the fact that I am feeling really good. In fact, I’m feeling better than I’ve felt in 4 years. The only drawback is the annoyance of my neuropathy. There are times I can pretty much ignore it, even though my feet are numb, and there are other times when jabbing pain demands my attention. It’s unpredictable but I’ve noticed little things that seem to trigger it: not drinking enough water, standing for too long, swelling in my feet.

My blood tests at the end of September showed a continued slow climb in my cancer load. I also had a bone density scan done and although my bones are still in the normal range, there has been considerable bone loss over the past two years. It’s a triple whammy assault on my bones as there is a small amount of loss expected with ageing, but other contributing factors are my cancer and the use of high-dose corticosteroids in my treatment. All of these tests have been faxed to my doctor at Stanford for his review. I am still waiting to hear from him regarding his opinion of maintenance treatments or at what point another round of chemo would be commence.

I continue to receive my monthly IVIG infusions to replace what I don’t have in my immune system. There has been a little improvement in one of the immunoglobulin proteins (IgA), although the numbers are still below normal.

Thank you for your continued interest in our lives and, in particular, my health. You’re continued prayers are needed as the battle continues. Specific prayer need is our health insurance situation. Steve will go on medicare in January, as our arrangement for health coverage with the new owner of the business will end on December 31. I am eligible for Medicare, also, due to my disability ruling. However, we have been told that medicare will not cover my IVIG infusions that I need every month to stay healthy. These infusions are too expensive for us to pay for directly. We are in the process of looking at all our options, meeting with our insurance agent and talking with Social Security.

We pray many blessings will be yours as you bless us with your love and support.

A busy summer

2009-08-18T23:23:00.001-07:00

I’ve had good intentions of posting once a month, but I’ve been too busy having fun and traveling! Being able to travel and get away from home makes me feel like I’ve been let out of prison.

At the end of June, we traveled to Arlington, Oregon, to visit my oldest brother and wife, Ernie and Crystal, with the added benefit of seeing his grandson (my great nephew) who was visiting from Texas. We hadn’t seen Jeb in about 9 years. It goes without saying that he was a lot taller. It was great fun watching grandpa and grandson being cowboys together and sharing their love and interest in horses.

In July, I was a part of the “pit-crew” for Johanna and Lyn as they rode in the STP (Seattle to Portland) bicycle ride. They were a part of 10,000 cyclists who rode around 100 miles a day to complete their journey in 2 days. They were part of a team of friends connected through Trinity Western University and a ministry some classmates have started in Rwanda. Team Wellspring had around 19 riders, I believe. The pit crew makes sure their meals are provided before and after each day’s ride and sets up camp halfway and breaks camp in the morning. It was an exciting event and I was so thrilled to have the energy to be a part of the support team.

About 10 days after returning from the STP, Steve and I loaded his motorcycle on a trailer and hauled it to Colorado where he met up with some other guys from Redding. We enjoyed visiting Steve’s sister and family prior to his ride, and I continued to enjoy their company while Steve rode around western Colorado with the “geezer gang” for about 5 days. We also got to meet his nephew’s fiancé who will become Mrs. Lance Rosten in October. Laura and I found out we came from the same church background and it was such fun meeting her mom later in the week and realizing how many people we both knew from our denomination.

Steve and I met up again after his ride and continued on to Durango where we attended the 40th wedding anniversary of a couple who had been our neighbors when we first moved to Redding. It was such great fun to share this special day with them and get to see their kids again and meet their babies. A ride on the Durango-Silverton steam train, half a day in Silverton, a visit to Mesa Verde National Park and Arches National Park and a flat tire in Nevada rounded out the rest of our trip. Steve caught a cold a few days before we headed home and, unfortunately, it caught me, too. I made it home and then spent 4 days of complete rest. But I am happy to say that I fought it off without antibiotics. I was again very thankful for the successful sinus surgery as it certainly contributed to the congestion being less severe.

Tomorrow we head out again. This time we’re hauling the motorcycle north. Our initial destination is the home of good friends in Bellingham, WA. From there Steve will meet up with 3 or 4 friends from B.C. and will be off on another adventure with the guys exploring northern Washington and southern B.C. My friend, Chris, and I will spend the time on Lopez Island in the San Juan’s enjoying a peaceful retreat at a cottage whose location was recently featured in Sunset Magazine.

So now to the serious stuff: Today was my monthly IVIG (immunoglobulin G infusion). Yes, they are still necessary. The test run last week on my immunoglobulin proteins actually showed a little improvement, although they are still way below normal. However, it is unsure whether the numbers are indicating recovery or just a response to my illness. Both of these are positive things, although recovery would certainly be the best. This test will be repeated at the end of September. My blood counts were good, but my free light chain test was not so good. The “ratio” has taken a big leap up and is already out of normal range. This will also be checked again next month to confirm whether this is the cancer rearing its ugly head again or a response to my cold. If it is elevated next month, I will have to begin maintenance treatments. Depending on how high the numbers have gotten, the doctor is hopeful one cycle of treatment every 3 months will keep me stable. However, this maintenance approach has not been cleared with my Stanford doctor, whose experience and wisdom must enter into the decision.

We’re trying not to worry about this development until we see where the numbers are at the end of September. In the meantime, we are continuing to trust the Lord and enjoy our lives together and travel as much as we’re able. We’ve enjoyed being able to re-connect with family and friends and look forward to opportunities to expand our destinations.

Time to catch up

2009-06-16T08:01:00.000-07:00

My sinus surgery is behind me now and everything went smoothly. I had very little pain following surgery and didn’t need the vicodin that was prescribed for pain; Tylenol was adequate. The worst part of the whole ordeal was the nurse trying to find a vein for the IV and my two post-op visits. Ever had you sinus “vacuumed”? Most uncomfortable! The good part? Coming out of surgery and feeling like I was hyper-ventilating cause so much air was rushing into my nose. I had no idea how narrow my nasal passages had become over the years. When it comes on gradually, you just adjust. The pain in my left cheekbone is gone now that the cyst has been removed. Since recovering from my surgery, I’ve noticed that my over-all recovery has noticeably progressed

There has been a slight improvement in my neuropathy. You wouldn’t know it, though, cause I’ve continued to drop things if I’m not really careful and I’ve broken a couple of glasses and a glass bowl in the past month. I cut my thumb on the bowl and didn’t know it, until I saw blood everywhere. Steve helped me do clean up so I didn’t further injure myself. The increase in the dose of medication for the neuropathy has helped tremendously, but I still have to carefully pace myself so that I’m not on my feet for very long at a time. I don’t know why but some days are better than others.

My first 3-month check up was at the end of May. All of my numbers are still looking good, with one exception. My immunoglobulins continue to be way below normal, so monthly immunoglobulin G (IVIG) infusions continue to be necessary. This leaves me vulnerable to catching a myriad of illnesses. Also, I am unable to build antibodies, so immunizations do not help. In fact, I can’t have any immunizations that are “live” virus since I would contract the illness from the vaccine. Continued prayer is needed for this.
I had a hearing before an Administrative Law Judge this week regarding my eligibility for Social Security Disability. The first ½ hour was spent answering questions from the judge and the second part was answering questions from my consultant. My consultant and I were both shocked when the judge interrupted us on the second question and said that he would issue a favorable ruling if we would agree on a disability date of July 2006. This is when I was first diagnosed with the immune deficiency, a full year before my cancer diagnosis. Praise the Lord for his mercy as this judge is very difficult and has never issued a ruling from the bench before for my consultant. Within the next couple of months I will receive back pay and will begin receiving my monthly amount. This ruling also makes me eligible for early Medicare coverage. This is another blessing, as our group health coverage through the new owner of our business will end in December.

Steve is currently nursing badly bruised ribs. Steve didn’t realize Ty had come up behind him when he started to turn around and walk the other way. After doing a little dance to avoid stepping on Ty, he fell against a piece of furniture. Ty and the furniture are okay. In fact, I sat in the car with Ty while he slept and Steve went into the walk-in clinic for x-rays. No fractures were found initially, but we’re waiting for the radiologists report.

Thank you for your continued prayers and interest our lives

The Hair on my Shinny-shin-shin

2009-05-10T09:33:00.000-07:00

Recovery is being observed by hair starting to grow on my legs again! My energy level is increasing faster than my feet can handle. The neuropathy in my feet is becoming an obstacle to my recovery. Standing or even just walking for too long makes my feet really ache and then my ankles get weak. Sitting and resting them regularly during the day is required, even when I feel like I could keep going. I am always very aware of the loss of sensitivity and numbness that begins just below my knees and goes to the tips of my toes. It is not quite as bad in my fingers and hands, but it is there also. I have to be careful not to burn my fingers when I’m cooking. The doctor has increased my neuropathy medication a little to see if it will help with the problem with my feet.

But onward and upward……we just returned from a 10 day trip north to visit family and friends. Our most northward destination was B.C., where we visited some of our Canadian friends and attended the President’s annual “State of the University Dinner” at Trinity Western University, where our kids attended. This was primarily a “sitting and visiting” trip, so that my feet were not challenged too much beyond what I could handle. However, we did enjoy a few easy, short hikes in some beautiful areas of B.C. and a trip to the tulip festival in Mt. Vernon, WA. I especially enjoyed being able to make a trip that did not involve doctors or hospitals; and it was so great to have an opportunity to visit everyone.

On Wednesday I will have my sinus surgery, which was determined as necessary back in January when I was referred to an ENT doctor. I am not looking forward to it, but am anxious to get it done.

Thank you for your continued interest in my recovery and in our lives.

April Fool's Day

2009-04-01T12:51:00.000-07:00

Since it is April Fool’s Day, do I need to begin with a disclaimer that all the information contained herein is true and no joke?!

The medication for the neuropathy pain has helped tremendously and I’ve been able to get by with just one dose at night. My feet continue to really ache when I’m on them very much and always ache at night even if I have been quite sedentary during the day. If I can get Steve to gently massage my feet before I go to bed, it stops that awful aching and I can get to sleep much quicker. The burning sensation continues to come and go as well. I continue to gradually gain more energy and strength each day and have been able to increase my walks to a mile several times a week. I’ve been able to shed a few pounds and hope to continue moving the scales downward. Isn’t this an ongoing goal for all of us at this age?! I just have the added task of losing the “steroid” weight and the struggle of rebuilding the muscles that the steroids damage.

My lab work done last week indicates that my immunoglobulin proteins continue to show low numbers. The three that are routinely tested for are: “G”, “A”, and “M”. The “A” and “M” have stayed at the same below normal value for over 2 years now and have shown no improvement. The “G” has shown a very slight improvement recently. It’s been 2 months since my last infusion and it has now dropped below normal, so I will receive an infusion tomorrow. Getting more technical, I have also learned in recent months that the “G” protein also has 4 sub-categories that mean particular things regarding your immunity. My symptoms are exactly what those low numbers indicate: allergies, sinus problems, repeated respiratory infections. The immune deficiencies are connected to a problem with the “B” cells in the bone marrow, which is also involved with my myeloma; so, it’s all still somewhat tied together.

We continue to be thankful for the blessing of so many who care for us and continue to lift us up in prayer for our needs. So, prayer warriors, continued prayers are needed for the recovery of my immune system and a healing of this origin of the problems in the “B” cells. May God bless you for your faithfulness.

"Reel" Shoes

2009-03-15T17:24:00.000-07:00

After wearing only the most comfortable walking shoes this past year, last night I put on a real pair of high-heel shoes (to which my toes bitterly complained!), and my nice black dress to attend the Awards Ceremony for our first local film festival – The Sundial Film Festival. Jesse had submitted a 10-minute film titled “Cart” and a close friend of his composed and performed the music for the film. It was a touching story with no dialogue, just music that matched the mood for each scene. We were so proud to be there to see him win top honors of “Best of Show”! A nice cash prize accompanied the statuette. It’s moments like this that make the battle through treatment worth it!

This week I received copies of my labs and pathology report from my appointment at Stanford on February 24. It’s been 5 years since my blood counts were this good! The most amazing information in the pathology report was that all of the chromosomes tested were found to be normal when there had been abnormal chromosomes at diagnosis. We know this is God’s handiwork and a response to the many prayers lifting me up over the preceding months. This is not just my victory, it is yours as well!

The neuropathy pain has become more intense recently, to the point of causing nausea at times. Lack of sleep due to the pain only contributes to the brain fade that pain also causes. My primary doctor gave me some samples of Lyrica to try this week. She said it only works about 50% of the time, but it was worth a try. It certainly does help me sleep, as “drowsiness” is one of the side effects. I’m supposed to keep increasing frequency and dosage every few days until a level is reached that has the pain under control. I certainly have improved some this week just with one low, nightly dosage, but I am supposed to start taking a second dose during the day. I plan to begin the daytime dosage this week and hope that I’m not a walking zombie or end up spending the day sleeping on the couch. Please continue to pray concerning my neuropathy.

The Hurtle

2009-03-07T07:38:00.001-08:00

My immunoglobulin panel was done this week and then I saw my allergist/immunologist to discuss the reuslts. The numbers were not as encouraging as I had hoped, but he did encourage me that he thinks the immunoglobulin G might be improving. The others (A and M) are not improving at this time. Since the G is still in the normal range an infusion was not scheduled for this month. This lab will be repeated and evaluated again at the end of the month.

In spite of my best efforts to the contrary, I seem to be getting the same “bug” that incapacitated Steve for most of last week – fatigue, sore throat, cough. The achiness from this bug on top of the neuropathy pain has been a double whammy, although, the neuropathy pain comes and goes.

Your continued prayers are appreciated as recovery progresses. The recovery of my immune system (the immunoglobulins) is an important part of that process.

Thank you for the many kind words of sympathy following my brother’s death.

A Victory and a Hurtle

2009-02-11T16:27:00.002-08:00

February 25, 2009

The news everyone is waiting for – the report from my bone marrow biopsy. My Stanford doctor used a term not generally used with my type of cancer - “total remission” – no cancer cells found in the marrow! He said he would expect that this could be maintained for a number of years! We will get copies of labs and pathology reports later this week, but he did say all of my blood counts were in the normal range. Blood tests every 3 months will monitor my status. We cried happy tears when we left the clinic and are so grateful for God’s handiwork through all of this.

My youngest brother, Hal, was still with us and we all shared the happy news together. On our way home, we left him at his hotel in San Francisco so he could catch his flight back to Texas this morning. It was a bittersweet victory as we had just returned from our brother’s memorial service in Portland.

My brother’s memorial service was very honoring of his life and very inspiring to our lives. It’s still difficult to grasp the fact that he is really gone. Please pray for his family as they make the difficult journey of transition to life without him.

So, the next hurtle for me is my immunoglobulin proteins. Those will be tested next week. My Stanford doctor said they should be showing signs of recovery by now. If they don’t show improvement soon, then we will know that there is an issue with them that is separate from the cancer. Continued low numbers will indicate an immune deficiency and immunoglobulin G infusions will continue to be needed. If this is the case, it makes me wonder if this deficiency contributed to my developing cancer.

Celebrate with us the good news we received this week and continue to pray that recovery will be complete and good news will be received after next week’s test!

The day of love

2009-02-11T16:27:00.001-08:00

It appears my blogspot calendar can't move past February 11!

This post was made February 14, 2009:

Ah yes…..the day of love, Valentines Day. A day to celebrate and remember those you love; a day to be thankful for the many who love you. It is a bittersweet day for me thinking of my brother, whom I loved very much, whose body is now free of cancer and whose beautiful voice is now singing in a heavenly choir. I’m thankful for my wonderful husband whom I’ve been blessed with who has shown his love for me in so many ways as my caregiver and support as he has lived through this cancer journey with me. I’m thankful, too, for all the friends and family who have been so faithful in their love, support and prayers.

My bone marrow biopsy was on Tuesday morning at Stanford, but my underlying goal was to get to Portland to give my brother another hug and sit with him during the last hours of his life. My youngest brother flew in from Texas on Monday night and we picked him up at the San Francisco airport on our way through town. We all spent the night in a motel near Stanford. I was to be there at 9:00 am and judging by the time we were there for my last biopsy, I thought we could still make it to Portland late that night. However, it was not to be. They were overbooked with biopsies that morning and a new computer program was giving them difficulty and they were unable to print anything.

It was an agonizing morning, not only because it took so long to get done, but also knowing it was delaying us from going on to Portland. I didn’t get the nurse practitioner that I had requested for my procedure. The nurse I had was doing fine until she hit a “dry” spot and couldn’t get any marrow. She had to call for the other nurse (the one I had requested in the first place) and the two of them worked together and they started all over again at a second location. I was finally released at 12:45. Then it was a quick lunch with my myeloma friend, Nora, and her husband, as our appointments were the same day again.

As soon as we were headed home, I called my niece only to learn that my brother had a taken a turn for the worse and they didn’t think he would last much longer. By the time we arrived home to re-pack, a storm had blown in and I-5 was on the verge of closing, which happens when there are blizzard conditions. It was an agonizing night as we realized the storm wasn’t going to blow out of here for over 24 hours and we weren’t going to make it to Portland. At 11:15 pm we received the call that my brother had passed from this life to the next. Hal, Johanna, Steve and I all sat together for over an hour and cried and reminisced.

On Friday afternoon I received copies of my labs from the blood draw done on Tuesday at Stanford. My blood counts are still not quite in the normal range, but definitely improving. My free light test continues to show a good response to treatment and the numbers are actually below normal.

I continue to have pain and weakness from the neuropathy, but I am beginning to have longer periods of relief this week. The sores in my nose are almost completely healed now. The only place I completely lost my hair was on my legs, and that’s not such a bad thing! Recovery of my strength and energy is slow and I’m trying to be patient.

We are thankful for all the rain and snow, which was really needed. Please pray that it will not interfere next week as we travel around Oregon; first to visit my oldest brother and then all of us will go on to Portland for Chuck’s memorial service. Please pray for my entire family as we say our good-byes to one who was loved so much.

In Memorium

2009-02-11T16:27:00.000-08:00

Charles Edward Holmes, March 1, 1944 – February 10, 2009

Singing now with a heavenly choir.

Services are Saturday, February 21, 2009, 10:00 am

St. Matthew Lutheran Church Beaverton, Oregon

I will miss you, Chuck, my brother and friend.

Ho Ho Ho......the big 6 - 0

2009-02-08T17:03:00.000-08:00

Well, another birthday rolled around this past week and the odometer clicked over to “60”! Each birthday is a celebration of another year of life for all of us, especially for me. On Thursday, my birthday, Jen and Jeff took me to dinner and a movie. Saturday night I thought we were going out to dinner with friends, but was surprised when we arrived to find the room full of 40 of our friends! It was a great evening. I was so touched by all the kind words and greetings, and the remarks made by our kids. Tonight, the kids are preparing dinner for me here at home. I love family dinners and time together. We make a big effort to always gather for family birthdays so that we stay connected with one another in spite of our hectic and separate lives.

I continue to struggle with neuropathy and it has become quite painful this week, keeping me awake at night. Sleeping medication has helped and I will have to continue to depend on it for the time being. The pain makes me foggy headed and lack of sleep does the same. I think the pain is more difficult to overcome when you are tired, too. Please continue to pray regarding the neuropathy.

Tuesday morning is my bone marrow biopsy at Stanford. Please pray for me at this time, too.

I have been well-celebrated for my birthday, but there has also been a shadow of sadness hanging over me as my brother, Chuck, lay in the hospital with life-threatening complications from his leukemia. He is in and out of consciousness today and his lungs have filled with pneumonia. His family is keeping vigil at his bedside.

Please pray for all of us at this difficult time.

The Pill Brigade

2009-01-31T10:06:00.000-08:00

This morning finds Steve and I with all of our vitamins and supplements filling our pill-boxes for the week, hoping they will help either maintain or restore our health. After gaining some additional information about help for neuropathy at the support group meeting, I have added some supplements that I am hopeful will help.

Treatment is over, but side effects are still ongoing. Some side effects happen within the first few days and others are delayed a couple of weeks. My hands were quite tender again for several days this week, but are improving now. They are still peeling some and the new skin underneath is quite tender. I wouldn’t describe the new skin as “smooth” as the insides of my hands are fairly wrinkly, but they do feel “slippery”. Neuropathy is ongoing. Recovery of my bone marrow and my strength and energy could take anywhere from 3 months to a year. I’m hoping for 3 months, but am prepared for the long haul.

The neuropathy is a strange thing. It comes and goes in its intensity and why it is worse at night, I can’t figure out, except that I know the body repairs itself during our times of rest and sleep. However, the pain does keep me awake for several hours at a time. I’ve had a lot of pain in my left heel and it has made it difficult to walk at times and when it is hurting I can’t let it touch anything; so it can be difficult at night to find a comfortable place to put my foot as it can’t even touch the sheets. However, I will endure, as I know the pain is from the nerves trying to heal and I do want them to heal. I envision those neuron impulses trying to send signals down the nerve pathways and maybe the pain is caused when they hit the “dead zone”, like hitting a brick wall. Then they pound away for a few hours trying to get through and then give up until they make another attempt.

My blood work this week was pretty good, although still not up in the normal ranges where we want it. My platelets were lower than previous cycles. I’ve noticed that they would drop lower each cycle, but they always recovered within the 10-day rest period between treatment cycles. My Free Light chain test shows the ratio is in the normal range now. It was below normal, so I’m hoping that indicates that all the malignant ones were killed off and now these are the normal ones. My immunoglobulins continue to be below normal. They are not showing as much recovery as I had hoped I would see by now. So I went for my immunoglobulin “G” infusion yesterday. I felt like I was starting to get another cold and cough and I have improved since my infusion yesterday.

The chemo fog has begun to clear and I was able to start tackling the pile on my desk and get caught up on the bookkeeping for our commercial property we still own. The medical records are a time consuming task, too, and a job that must be brought current this week. And we all know this is tax season, so it is time to get all our records together for our accountant. Guess what I’ll be doing this week? And, for exercise – housework! Now doesn’t my life sound exciting? But, Praise the Lord, I will be doing “normal” stuff and that makes me happy after many months of many days barely functioning.

Thanks for your prayers for my brother last week. He has been able to begin his treatments again and the “chemo cocktail” has more drugs added that they are hopeful will get on top of his cancer. He is surviving by the Grace of God and many transfusions. He has had over 30 transfusions since his diagnosis and the majority of those have been in recent months.

Are you a blood donor? Chuck and I both depend on the generosity of those who graciously give of their blood. My immunoglobulin G is sometimes not available and I have to wait for my infusions. Fortunately a few days or a week are not so critical for me as a wait for Chuck would be more critical.

As always, we thank you for your love, prayers and support!

Ye ole Pot Belly

2009-01-24T08:28:00.000-08:00

Completed! Done! Finished! Yesterday was my last treatment…….for now. I always have to qualify that statement because until there is a complete healing in my body, the reality of future treatment looms over me. We really won’t know much about the effect this treatment has had on the cancer until we receive the results of the bone marrow biopsy. The biopsy is scheduled for February 10 and my appointment with my specialist at Stanford is on February 24. In the meantime, my body gets an opportunity to begin the post-chemo recovery process.

It can be a bit of a guessing game trying to track my type of cancer. The cancerous cells grow in sheets or clumps in the bone marrow, so depending on where the biopsy is taken, it can show lots of malignant cells or not very many. The results are given in a percentage range; i.e. 30-40%; 60-80%, etc. My cancer load is also tracked by the specialized “Free Light Chain” blood test and that has been showing a good result. However, everyone has a normal range of free light chains. In my case, even if I am in the normal range, the question is “are they normal cells or malignant cells”? So you see, my “living by faith” takes on new meaning for me and requires a deeper walk and greater dependency on the Lord; which, when all is said and done, is a good place for all of us to be.

The numbness, pain and achiness from the neuropathy has been most uncomfortable this week, but manageable knowing I’m at the end of treatment. There should be some improvement in the weeks ahead; although, I do know that there will continue to be the sharp, shooting pain and/or burning, hot sensations as the nerves heal. For example, the bottoms of my feet can feel like they are on fire, but when I touch my feet they are actually icy cold. With the numbness in my fingers, I’ve had to be very careful when handling things so I don’t drop anything. The condition of the skin on my hands is improving everyday now. The numbness that I experience on my lips and tip of tongue comes and goes with the treatment and should clear up soon now that I am done. I was given a prescription for medication to help with the pain, but everyone at the support group meeting last week said none of those medications had helped them and since I really didn’t need another prescription that said “may cause dizziness; may cause drowsiness”, I decided to manage without it.

The weight gain from the steroids has pretty much concentrated in my stomach; so I officially have a “pot belly”. This is one of the known side effects. Fortunately, my face didn’t swell, as it often does with steroid use. The chemo drugs have turned my skin kind of brown, some places darker than others. Except for one time, the red bumps or rash or sores that would come and go on my body haven’t affected my face. My hair thinned and the texture changed, but I never completely lost all of it. When people would see me, they would always say, “You look great!” However, inside I was weak and shaky and my stomach was often queasy.

We are very grateful for the widespread prayer support of our family and friends and those connected to them in some way and for some type of communication that has come from many of you. It is like a lifeline when a card, email or phone call comes and you are reminded of the support that is out there. This is just the first round in this battle and we’re hopeful for a positive result, so please continue to pray for us.

One other request I have this week: Many of you know that one of my older brothers, Chuck, has been battling Chronic Lymphocytic Leukemia since his diagnosis last May. Things have not been going well for him and if the Lord would bring him to mind, please offer up a prayer for him. Thanks!

The Last Round......for now

2009-01-19T07:43:00.001-08:00

Last Tuesday I began my final cycle of treatment! Hooray!

I kind of look forward to that first day of steroids, 'cause the boost it gives me makes me feel like my ole self, but it’s downhill from that point and after the accumulation of many weeks and months of treatment, my body is really worn down and reacting with more side effects. I’ve experienced more nausea and difficulty with my stomach being “unsettled” from the chemo drugs and acidic from the steroids, even though I’ve had medication to help with both. I’m just weaker overall and everything is more of an effort. My hands had healed up a little, but now they are so sore and raw that I can barely touch my clothes to dress myself.

There is a large myeloma support group in the Bay area that meets once a month that I have wanted to attend. However, it’s been difficult to coordinate the meeting schedule and my treatment schedule to make that possible. Even though I’m in the middle of this treatment cycle, I knew that I would still have enough energy from the steroids to attend their monthly meeting on Saturday morning. So, we left the house really early to arrive at the Stanford conference room by 10:00 am. It was so helpful and informative and I’m so glad we could attend. Just wish there was a group like that closer to home. It was difficult to hear what some of them have gone through to control their disease and keep their bodies in tact (myeloma destroys the bones), but it was also encouraging to hear how long some are surviving and managing their disease. There was a great deal of discussion about stem-cell transplant vs. the new drugs available today, and more becoming available each year. The top myeloma doctors and research/transplant centers were discussed. The sharing of information and experiences was invaluable.

After a leisurely lunch with my myeloma friend, Nora, and her husband, we headed on down the road to see our newlywed kids, Jen and Jeff. They were looking forward to our visit as we were delivering a used washer and dryer we had picked up for them for Christmas. Jen took good are of me as I started coming off the steroids and was lethargic and sleeping. That’s what I’ve pretty much done off and on now for the last couple of days – sleep. The pain and aching from the neuropathy and steroid withdrawal has begun now and I was glad to get home to my own bed last night.

Two more treatments this week and then I hope for some ongoing recovery of my strength and stamina. We’re waiting to hear when my bone marrow biopsy is scheduled, but it won’t be until sometime in February.

We rely on your prayers and thank you for your faithfulness to us.

The Nose Report

2009-01-12T14:52:00.000-08:00

I arrived early this morning for my CT scan only to be told at check-in that they hadn’t received the orders from my doctor! It was 7:45 am at this point and I knew no one would answer the phones until 9:00 at my hematologist’s office. They went ahead and checked me in and said they would call the doctor’s office. I told them that everyone arrives at 8:00, but they don’t start answering the phones until 9:00. I said a quick prayer and hoped that everything would get done in time for me to get to my 9:30 appointment with the ENT doctor. They were able to reach someone and the delay was only about 15 minutes. We waited for the films so we could carry them to my appointment. After not being able to eat or drink for 4 hours prior to the CT scan, I was grateful there was time for a quick stop at Starbuck’s for something to drink and a little snack.

We were happy to learn that there is no infection in my sinuses. However, there is a large cyst on the left side. It was first discovered in 2004 and has gotten larger, to the point it is putting pressure on the areas around it and that explains part of the reason for all the feeling of pressure in my face, especially in my left cheek bone. Also, the “turbinates” are enlarged to the point they have practically filled my nasal passages making it difficult to breathe, especially at night. They also have impaired my ability to smell and, consequently, my sense of taste is impaired as well. Since I have already tried all the medications that would help this problem and it has only gotten worse, surgery is now required; but the ENT doctor assured me it is a fairly simple surgery, as far as sinus surgeries go.

So now, everyone is wondering what “turbinates” are. They are on the lateral walls on each side of the nose and are made up of tiny layers of bone (kind of like a sponge) and are covered with a very vascular (lots of blood vessels) layer of soft tissue. Their function is to warm and humidify the air entering the nose and provide a bacteria-fighting enzyme. They are also covered by millions of cilia (little hairs), which filter the inhaled air.

The ENT doctor assured me I could finish my last round of chemo and then schedule the surgery after ample time has passed for me to recover. It will be essential that my blood counts and platelets have returned to a fairly normal level before surgery. It will take some planning to schedule surgery, recovery time, bone marrow biopsy and follow-up appointment for the results of the biopsy and not have all of this drag on for a couple of months.

It’s always a relief to know what the problem is, but I’m not looking forward to surgery right after completing my chemo. If my immune system does not make a complete recovery after this next cycle of treatment, it will leave me very vulnerable to infection and a slow recovery following the surgery. So, prayer warriors, these are the present needs.

I begin my last cycle of treatment tomorrow afternoon.

South, not quite to the border

2009-01-10T11:17:00.000-08:00

On Tuesday morning, I was able to schedule an appointment with an ENT doctor. His office would not schedule a CT scan until after he had seen me at the appointment. In order to do a culture I needed to be off antibiotics for at least one week. Consequently, the appointment was scheduled for Monday, January 12. I passed all this info along to my oncology nurse here in Redding.

Steve was leaving Tuesday morning to drive to southern California to attend the funeral of a relative and since I wasn’t in treatment and had no appointments for the week and my blood counts had come up enough to be around people, I quickly packed and went with him. I was even able to help drive for a short time. It felt really good to get away even though the purpose was to say good bye to a wonderful man who had lived a long, productive life, and who had such a positive influence in so many lives. The day after the funeral, we were able to visit my dad whom I hadn’t seen in 2 years. He’ll be 92 this month and certainly isn’t as strong as when I last saw him.

I received a phone call on Thursday morning from my oncology nurse in Redding to tell me my hematologist had gone ahead and scheduled the CT scan and it would be done at 7:30 Monday morning. I am to take the film with me to the appointment with the ENT doctor. Also, he had talked to my doctor at Stanford and he agreed that my sinus problem needed to be dealt with before I had more treatment. Not knowing what next week will bring after the appointment on Monday, we decided we’d better head home on Friday and get some things done, such as put the Christmas decorations away and clean house.

The pain in my legs from the neuropathy was more intense most of the week and I would have sharp, shooting pains in my feet from time to time. It would keep me awake at night, and during the day, I would try to just keep smiling, but I would get quiet, as my brain would fog over from the pain. It wasn’t as bad on Friday while we were driving home, but the bottoms of my feet felt really hot. I do have a prescription now for medication if the neuropathy gets any worse. My legs were still pretty weak and wobbly most of the week and I had to walk slowly and carefully and made sure if Steve’s arm wasn’t available, there was something to hold onto. By Friday afternoon, though, I felt I was beginning to gain some strength in my legs. The weather is clear and the temperatures will be in the 60’s for several days, so I’m hoping I can start walking a little and further gain some strength. My hands are still quite tender and an itchy rash has developed.

Please pray that whatever the ENT doctor finds can be easily remedied so I can finish my treatments.

Teatment suspended for now

2009-01-05T21:02:00.000-08:00

I am happy to report that many of the side effect issues are beginning to lessen. My hands are in much better shape after using a prescription cortisone cream. The rash on my body is almost completely gone. The pain and cramping in my legs is infrequent and minimal. The doctor did prescribe a medication for me today for the neuropathy pain, but it may not be needed at the present time.

It was decided at my doctor appointment today that my treatment is suspended until my sinus problem is dealt with. The next step is an appointment with an ENT, CT scan of my sinuses and a culture done to determine whether I’m dealing with a bacterial or a fungal infection. As I’ve stated before, not only chemotherapy but also high-dose steroid treatment puts me at risk for fungal infections. (I do have several spots on my body that are developing a fungal rash again.) My local hematologist is concerned that I might be dealing with a fungal infection in my sinuses since it has not responded to all the antibiotics and actually seems to be getting worse.

The results of the Free Light Chain test done last week were available today. It shows that my free light chains are still actually below the normal range, which hopefully indicates that the cancer is under control for now. I am hopeful that my immunoglobulin panel will show further recovery when it is repeated sometime in the next few weeks.

My local doctor will be talking to my Stanford doctor tomorrow morning to discuss what is next: will the 6th cycle of treatment be completed when my sinuses have cleared up; will 5 cycles be adequate for now; should a stem-cell transplant be considered and stem cells harvested now while the cancer load is reduced? I’ll post again when I hear from my local doctor.

Thanks for your many prayers this week. When you pray for the immediate issues, it gives us such encouragement to see His hand at work in response to those prayers.

Another year begins

2009-01-03T08:53:00.001-08:00

Another year rolls around and with it we hope will be improved health for me. Side effects have really accumulated, leaving my week off treatment a struggle. Weakness and neuropathy are increasing and spreading, and one wonders how you can be numb and in pain at the same time. The pain from neuropathy does not respond to ibuprofen or any other type of analgesic. It only responds to medications that are specifically designed for nerve pain; medications that I don’t have as yet. The weakness in my legs is what I notice the most as it is difficult to stand up from a chair or to climb stairs, which we have an abundance of in our home. As long as I don’t stand for too long, I can walk on a level surface successfully, so am able to make the long walk from the parking lot of the hospital to the infusion center and am able to continue to help with a little grocery shopping. My vision has become somewhat blurry and I have a rash that developed last week and am grateful it doesn’t itch. My hands are red, raw and have sores. Cortisone cream and other hand creams for dry skin have helped some, but Steve has to be my hands for anything that requires any kind of pressure; such as unscrewing a cap or opening a bottle or taking the lid off of something. My sinuses continue to be a problem and my voice is now hoarse. The question is whether this is chemo related or a separate problem that has developed due to my impaired immune system. Also, is the inability to smell or taste from chemo drugs or the chronic sinus infection? I’ve been on several different antibiotics and it has helped some, but hasn’t completely cleared up the problem.

Usually, during my week off, I really perk up. However, that has not been the case this time and my local oncology nurse has been in touch with my oncology nurse at Stanford. As a result, on Monday afternoon when I see my local hematologist, we will talk by phone with my Stanford doctor and “come up with a plan”. So, things are a bit up in the air regarding what is going to happen next. I don’t know if I will begin the final cycle of treatment on Tuesday, or whether there will be a delay or…..???

My blood counts were low this week. In fact, my neutrophils (the infection fighting white blood cells) were the lowest they have ever been. This has required 2 neupogen shots to force my bone marrow to make more. My doctor said my neutrophils were so low, that I was susceptible to an infection from my own bacteria. How’s that for scary?

Thanks for all the phone calls recently! It is so great to visit with our family and friends. When we hear people say “We’re praying for you” we are reminded of the Spiritual network we share as Christians and the comfort and strength we receive as a result of all those prayers.

The Comfort of the Cross

2008-12-26T10:57:00.000-08:00

I hope everyone had a blessed Christmas! We had a wonderful time with our family even though I was dealing with side effects from treatment. I had to remember what food really tasted like as I ate each bite and hoped my stomach would handle it all. I missed out on a roaring game of “Mad Gab” as I fell sound asleep in my recliner just as the rest of the family was beginning to play. Do I even need to say that our 13-month old grandson, Ty, was the center of attention! He delighted and entertained us all!

When I returned home from treatment on Tuesday, I was surprised by about 20 of my choir students from one of my choirs from the county south of us, who came and sang Christmas carols. It was so touching, heartwarming, and gratifying to hear their beautiful voices and observe them sight-singing their part from a carol book! The best medicine for a teacher! Jen was baking gingersnaps when they arrived and we were able to offer them cookies and hot chocolate for their labor of love.

I have had a great deal of difficulty coming off the steroids this time. The side effects began within 24 hours and a week later they have not completely subsided. My blood work on Tuesday showed some evidence that my liver is reacting a little to the steroids. Nothing serious…..just something more to watch. My other blood counts were good. An immunoglobulin panel was done a week ago and it showed that there is beginning to be a little recovery! I still need to have another immunoglobulin G (IVIG) infusion done, but I have been able to go 6 weeks between infusions this time instead of the usual 4 weeks. We are so thankful for these signs of progress.

Today is the last treatment of this cycle and I am really looking forward to my week off treatment and the opportunity for a little normalcy. One more cycle of treatment and then a biopsy to see where I stand in this battle.

The infusion center I now use for my treatments is located in the Catholic hospital. On the wall in the infusion suite is a crucifix. How comforting it is to have that reminder there before your eyes as you face a life threatening disease. The catholic cross, or crucifix, has Jesus on the cross; a reminder of His sufferings and the fact those in treatment are sharing in those sufferings. The Protestant cross is empty; a reminder of His mercy and hope for our future in that He has gone before us. Although everyone was very kind at the other hospital, the entire atmosphere is different here. You feel God’s Spirit and peace the moment you enter the building. My hope is in the Christ of Christmas and I know that I have an eternal life with Him as my hope for the future. However, I was very thankful that I am still here on this earth and could enjoy my family as we celebrated Christmas together. My thoughts, though, were also with those of our families who have empty places at their Christmas table this year as loved ones are missing from this earthly life. My trials and sufferings are my reality right now, but I know others have suffered far greater trials.

Thank you one and all for the Christmas cards and letters. We have enjoyed catching up on your family news and seeing your photos. We have looked forward each day to finding something in the mail besides bills and junk!

Reading the fine print

2008-12-15T21:43:00.000-08:00

There are many prescription bottles in this house now with my name on them. It is getting difficult to remember if I’ve taken my pills and at the right time. I got one of those pillboxes that have a place for the pills for each day of the week. This has helped some, but all of those prescription bottles are covered with little red and/or yellow stickers with warnings in fine print! “Take with plenty of water.” “May cause dizziness.” “Do not take antacids within 2 hours of taking this medication.” “Do not take this medication with grapefruit, orange or apple juice.” “Do not take more of this medication than recommended as it may cause drowsiness.” “Do not take this medication within 2 hours of magnesium or aluminum containing antacids or other products containing calcium, iron or zinc.” Then there is the question: Do I take it with food or on an empty stomach? I have 2 different medications that give the warning “May cause dizziness” and one of my chemo drugs causes dizziness. Does this officially make me a dizzy dame?

All of this is further complicated by the fact that I am now beginning to experience the phenomenon known as “chemo brain”. (Which is further reinforced by the warning on my nasal spray which says “This medication is for the nose”!) I didn’t want to believe it, but I’ve seen it happen to others and now it is happening to me. It’s actually quite similar to the “aging” brain but also different. It’s difficult to describe because I have chemo brain and words escape me! At any rate, I have to face the fact that I will soon slip into old age and my brain may never function again as it once did.

I haven’t felt as strong during my week off this time as I have during previous breaks in treatment. Steve and I both had a cold virus again last week. It’s going around, but we think we picked it up from Ty. He’s learning how to kiss and we’ve been practicing. You never know with little ones his age whether the runny nose is from teething or an actual cold. We both had to get extra rest and keep our activities to a minimum. I was thankful I had gotten most of the Christmas shopping done earlier last week; although I moved at a snail’s pace. I just kept reminding myself that it was the tortoise that won the race!

The skin over my port and the incision continues to itch some, and is red and irritated. I saw the doctor today and he is beginning to wonder if it is a reaction to the port itself. It didn’t clear up when I was taking the anti-fungal medication; and it doesn’t go away when I’m on antibiotics or the steroids. My body just doesn’t want that thing there, I guess.

Treatment cycle 5 begins and knowing I’m getting near the end will help me get through those downhill times that loom ahead.

Thank you for the phone calls, cards and emails. It really lifts my spirits to be reminded that I am being thought of and prayed for!

Short-term energy loss

2008-12-05T21:39:00.000-08:00

Another cycle of treatment completed today - - Hooray! Only 2 more to go. I’m on the uphill side of the cycle now. The downhill side during the first 10 days is getting increasingly more difficult. The side effects are increasing and, in particular, the issue with the steroids. I had a few very rough days coming off of them this week – muscle cramping in my legs and muscle weakness to the point that it was difficult to sit up, stand or walk. The neuropathy in my hands and feet has increased and is becoming uncomfortable. I haven’t been able to get out and walk much for about 4-5 weeks due to all the infections and treatment schedule, but started walking again yesterday hoping to regain some strength. We’ve continued to have clear skies, although the temperatures are not as warm as earlier in the fall.

My sinus infection didn’t completely clear up, so I’m on more antibiotics for the next 2 weeks. The dosage isn’t as strong as the last round, so hopefully this will take care of it without causing other problems.

Over the next 10 days, I’ll find that I feel so good some mornings when I wake up that I’ll automatically think I can pack my day full of things that need to be done. I quickly make a list, the length of which continues to grow as the weeks pass with so many items left over from previous attempts, but within a few hours I’m exhausted and have to rest and adjust my priorities. With Christmas approaching, those preparations will have to fill my available time as my difficult days of the next cycle will be the days leading up to Christmas.

Pie for breakfast

2008-11-30T11:25:00.000-08:00

It’s such a treat to grab a piece of pumpkin pie with your morning cup of coffee or tea the day after Thanksgiving! Of course, the other leftovers from our Thanksgiving meal are enjoyed later in the day as well. We had a wonderful Thanksgiving Day with all of our family here this year eating our favorite traditional foods. We have so much for which we are thankful this year. Of course, our grandson, Ty, is the center of attention at all family gatherings now!

Everything went very smoothly at my first infusion at the other hospital. I was able to do all of the registering at the infusion center while they were treating me, so time wasn’t spent at admissions doing the necessary paper work. The staff is terrific and there is a volunteer there from the time they open until around 2:00 in the afternoon. She tends to your needs: pillow, blanket, something to eat or drink. There are two nurses there all the time to cover the 8 chairs. There were no volunteers to help at the other hospital and the nurses had to tend to all of your needs. I was impressed with the efficiency and the over all good feeling I got while there. There is a lot more privacy between chairs, also. At the other hospital there were about 10 chairs all lined up with just a small table that was about 12’’ wide between each chair. There were no curtains anywhere in the room. There are curtains that can be drawn around every chair at this hospital.

The nurse who accessed my port used a spray that made my skin really cold and I hardly felt a thing when she poked the needle through. And yes, the port was still working. My blood counts are doing very well. White count and platelets well into the normal range, and red count and hemoglobin a little low this week, but not too bad.

The head oncology nurse at the infusion suite had the day off and the two nurses working that day were confirming with me that they would not be open on Friday, the day after Thanksgiving, and could they postpone my next treatment to Monday. I told them I was already aware of the closure and was all set up to go back to Stanford and explained that we had already made two trips down there after the other hospital closed their infusion suite. I told them that my drugs had to be given on a specific time frame and treatment couldn’t be delayed until Monday. When they looked at my chart and realized I wasn’t going to need blood work and that it only takes a few minutes to administer the drug, they just couldn’t fathom driving such a long distance again for such a short treatment. So one of them got on the phone to the nursing supervisor and got approval for one of the nurses on the inpatient oncology floor to give me my treatment on Friday! Praise the Lord we didn’t have to make that long drive again!

We did have one little crisis on Tuesday – my blood pressure got really high. I had already seen my primary doctor last week regarding my concerns that my blood pressure was starting to get higher during treatment. She told me to call the minute it started reaching a certain point and she would prescribe some additional medication to be taken just at those times. I was able to easily get a prescription and get it filled that afternoon and it was still pretty high in the evening, but was quite low by Wednesday afternoon. I forgot to take my blood pressure Wednesday morning in the midst of all the busyness of Thanksgiving preparations and was having quite a bit of dizziness when I would get up from sitting. One of the drugs I get causes my blood pressure to drop, so by the end of my treatment cycle it will be getting low again. It’s been a challenge! I have to carefully monitor it at home. Better to have it a little low and be cautious about those symptoms than to have it too high and risk damage or possible situation for stroke.

Thanks for blessing me with recent phone calls and cards. The contact with friends and family is a great comfort and encouragement.

Five-dollar Tuesdays

2008-11-25T07:43:00.000-08:00

About 3 miles from us is a small center of Factory Outlet Stores, where there is a movie theater with 11 small theaters, each one seating between 75-125 people. On Tuesdays, every movie is $5.00, which includes a small popcorn for free. When we are able to go on Tuesdays, it has been a fun and inexpensive outing for us. Since not many people go to the show on Tuesday evening, it has been something I can easily enjoy without a lot of exposure to a large crowd in a small area. It does feel good to go somewhere just for fun, since most of my trips out of the house in recent months have been medical related.

Today I begin the next cycle of treatment, which will now be at the other hospital in town. My appointment is at 11:00, but it will most likely be a long afternoon. It will probably take at least a half-hour to get all registered at admissions for my ongoing outpatient procedures. The oncology nurse there has already told me to expect an hour wait for the results of my blood counts, which is after they access my port, draw the blood and send it to the lab. This is the day I get both chemo drugs so infusion time will be longer, too. She has assured me that they have both of my drugs in stock.

My yeast infection is nearly cleared up and hopefully won’t flare up again while I take my steroids over the next 4 days. I don’t think my skin will completely recover from this, and the other problems related to chemo, until I am completely finished with treatments. My sinuses have improved enough, also, for treatment to proceed. However, an appointment with an ENT doctor is in the near future.

Jen and Jeff are home for a few days so all our children will be here to share Thanksgiving with us on Thursday. Jen and Johanna will help me make preparations on Wednesday and everyone is contributing something for our meal. We rotate Thanksgiving and Christmas with the in-laws and this was our year to have Thanksgiving, so we are very happy that Jeff’s schedule worked out for them to be with us.

There are many things for which we are thankful, but the top of the list this year is that recent blood work to assess the cancer load in my body has shown that we are getting a good response to this treatment. We are also very thankful for so many who diligently pray for us.

Happy Thanksgiving!

A John Deer Birthday

2008-11-21T13:12:00.000-08:00

Our little Ty-phoon was one year old on Tuesday, and it was also his Momma’s birthday. We had a fun gathering of friends and family on Sunday afternoon where we enjoyed the beautiful weather with an outdoor party. Steve gave all the little kids rides in his faux John Deer tractor-wagon. The little red wagon has been upgraded to a John Deer look – green wagon and yellow wooden slats around the top. Holly wanted to continue with the John Deer idea and made that the party theme: green and yellow balloons, John Deer plates, napkins, etc, including party hats (which nobody wore!). And, of course, a little toy John Deer tractor from Grandma and Grandpa.

Last week was a challenge. I’ve been having a great deal of trouble with my sinuses and had come to the conclusion that I probably had a pretty good sinus infection going. On Tuesday I saw my allergist for a routine visit and he confirmed that I did indeed have a very bad sinus infection. He prescribed 10 days of a very strong antibiotic. I just finished my meds this morning and my sinuses are not completely open. I saw my oncologist on Monday and he is beginning to be a little concerned that I might need to see an Ear-Nose-Throat specialist. However, he said I wouldn’t be able to have any kind of surgery now even if an underlying problem was discovered.

The strong antibiotics have created another problem as well. All of the places where my skin was red and peeling from the chemo drugs now have a yeast infection. This is being treated with oral medication and anti-fungal powder. I was supposed to begin the next cycle of treatment on Tuesday, but both of these issues have delayed things another week, as they both need to be cleared up before I begin again.

The other hospital in town is all set up now to do my treatments. However, their infusion center will not be open the day after Thanksgiving so I will have to make another trip to Stanford that day. They did assure me there wouldn’t be a problem at Christmas or New Years.

We were so blessed last week when a friend called and offered to help with housework. We’ve managed well on our own up till now, but I was pretty miserable most of the week with my sinus and yeast infections and was grateful for her help. I was feeling much better by Saturday and was able to bake cakes for the birthday party.

Please pray that these infections will clear up so treatment can begin again and that my sinuses will open up so I can breathe.

Thinning and Shedding

2008-11-10T19:08:00.000-08:00

I wish this referred to my body and weight, but unfortunately, it refers to my hair. It has thinned quite a bit now and doesn’t seem to be growing. I am grateful that it has thinned evenly rather than in patches. I have a wig ready to go if it gets too thin before my treatments are complete, but so far it looks okay. I am beginning to deal with other side effects as well. My skin is beginning to show the effects of the Doxil. I haven’t developed the hand-foot syndrome, but I do have red, irritated, peeling skin in several places from friction of clothing. I have sores in my nose and the mucus is bloody quite a bit of the time. Just the friction of chewing often causes sores in my mouth. My body is also having more dramatic reactions to the steroids and it is becoming increasingly more difficult to not only deal with the effects on my body while taking them, but also the effects that last for several days after I go off of them. It is most unpleasant. In spite of my best efforts, my body piles the pounds on overnight the minute the steroids hit my system and I am losing the battle at getting them back off before the next cycle. My blood pressure is going up in response to the weight gain and also all the sodium that is in the saline solutions and chemo drugs. I am very sensitive to sodium anyway. My feet and lower legs were very swollen from fluid retention a couple of weeks ago and I did finally manage to get it reduced by sleeping with my feet elevated and pretty much keeping my feet elevated when ever I sat down during the day. I’ve also been much more fatigued during this cycle and sleeping a lot.

Last week ended up being a grueling week for both of us, but we did successfully complete this cycle of treatment. Tuesday and Friday were long days with the approximately 500 mile round trip drive to Stanford for late afternoon appointments for my infusions. Then it was dinner while we waited for the evening commuter traffic to clear some and drive home.

On Tuesday, Steve and I were both fighting a virus, but between the two of us we were able to make the drive to Stanford and back. He felt the worst on Tuesday and then it really hit me early Wednesday morning, just when I was dealing with my chemo drugs, too. Steve bounced right back in a day, but it did take me a little longer. At my infusion on Tuesday, the nurse at Stanford took one look at my port site and saw how bruised, red and irritated it still was and decided it would be better to find a vein that day – 2 nurses, 3 tries with a “butterfly” and they were in.

On Thursday, I had my monthly immuno-globulin infusion, which pretty much takes all day. The nurse said she would make one attempt at using my port and if it didn’t work she would go hunting for a vein. We were both happy that it was working! Praise God! She dressed it and left it accessed for my infusion at Stanford the next day (Friday). I was concerned, however, about the seat belt. I wasn’t able to wear it across my chest on Tuesday and had slipped it behind my arm, where I wore a big sore in my sensitive skin. With the IV tubing attached to the port, it was going to be impossible to wear the seat belt. She suggested a small pillow over the port site to cushion the seat belt. It worked great.

I’ve slept a lot this week and was asleep by the time we were on the freeway on the way home on Friday night. I was exhausted on Wednesday and slept a lot and slept almost all day Saturday and felt pretty lousy. I am feeling pretty good today and was finally able to get out for a walk.

It is my week off treatment and time to catch up on the housework. We’re looking forward to Ty’s first birthday on the 18th. There will be a little party here in our back yard on Sunday afternoon for a few friends and family. The weather prediction for that day is sunny and mid-70’s! Who would believe that was possible for this time of year!

Thank you for your prayers last week during all the upheaval concerning my treatment. Please continue to pray as we have not received confirmation yet that the other hospital in town has received approval through all their necessary hierarchy to carry the Velcade that I get 4 times each cycle. This is what prevented me from going there in the first place for my treatments.

Monday morning quarterbacking

2008-11-03T17:02:00.000-08:00

Well, it’s been quite day with many phone calls and frustration trying to get information. But here is what we know regarding the hospital situation. My insurance company did not see a cancellation of the contract with the hospital when I called this morning. However, they did caution me that it could come through at any time, or already be in place and they didn’t have notification at their level yet. They advised me it would be wise to get my treatment at another facility where I knew my care would be covered. I called the hospital infusion center again around 1:00 pm, and my nurse there told me people were being denied treatment today cause the computers were showing their insurance was cancelled when she tried to input their info. That was the deciding factor for us. We had already alerted my nurse at Stanford this morning regarding the situation. She was able to get an appointment for me for my chemo at 4:00 pm tomorrow afternoon, so we have a long day ahead of us tomorrow. I’m grateful the drug I get this week doesn’t make me nauseated. It’s about 500 miles round trip and my treatment will only take a few minutes – that is, after they access either my port or a vein. I had blood work this afternoon (which looked really good!), so I won’t need to have that done tomorrow or wait for those results.

The nurse at my local doctor has been on the phone endlessly today, as well, trying to make arrangements for all their patients. There is another hospital in town that will take over, but there are people like me who are on special protocol treatments from larger medical facilities using specialized drugs. She is hoping that they will agree to carry my drug and treat me there. I just hope the nurses there are familiar with it since they haven’t been using it. She’s not sure she can have this in place for me on Friday, but hopefully before my next treatment cycle begins. So, it is up in the air whether I’ll need to go back to Stanford on Friday to complete this cycle, but we’re prepared to go if it is necessary.

So, regarding my port: They did another fluoroscope, which is like an x-ray, to see what could be done. This is the 3rd doctor I’ve seen now regarding my port – the first one put it in and then two others who have tried to see why it won’t work. Here is what we learned today – the tubing is long and loose and is moving around. When I lied down during the procedure today, he was able to manipulate it so he could access it. He said he couldn’t guarantee that it wouldn’t happen again; just the difference of sitting up or lieing down could cause it to move when it is loose like that. It just the way my body is made. He said to be sure to tell them at Stanford that I probably need to be lieing down when they try to access it. The nurse at my local doctor told me this afternoon that they’ve seen all kinds of weird problems with ports over the years. It did make me feel better that I’m not alone, but it also makes me realize why they were hesitant about whether the port would help or not. I’m sure it has been a tremendous help in many cases, but so far, not in my case!

Thanks for your prayers today! Please pray for us this week with all the added travel for my treatments. Steve & I both feel like we’re trying to catch a cold and we really need to stay healthy so my treatments don’t have to be delayed.

The ongoing saga of the port

2008-11-01T06:09:00.000-07:00

On Monday morning I had the port inserted. The procedure went smoothly other than the difficulty getting an IV into my hand as I was very dehydrated – no food or water for 4 hours before the procedure, only it was closer to 6 hours by the time they began. The port was placed on the right side of my chest just below my collarbone and protrudes more than I would have liked. A plastic tube was then inserted under the skin and fed up to the lower portion of the side of my neck where it was placed into my jugular vein and runs down the inside of that vein to just above the heart. I was very sore that night and the next day from the 1 ½ inch incision on my chest and the smaller one on the side of my neck. Even so, the idea was that it could be used the next day for the beginning of this next cycle of treatment with a minimum of discomfort once the special needle accessing the port was placed in it. It all sounds so simple doesn’t it? But as I’ve learned over the past 1 ½ years, nothing ever goes right or is simple with my cancer care.

The needle used to access the port looked like a big giant tack. After three tries and with increasingly longer needles, I was in misery. They were unable to get the port to properly work. So, they got me into radiology for a fluoroscope to see what was wrong. Somehow following the procedure, the tubing managed to create a loop above the port restricting the flow of any fluids. The radiologist said they could try to manipulate it back into place first and if that was unsuccessful, they would have to go back in to fix it. They gave no indication of how it could have possibly happened and I followed all of my post-procedure instructions carefully. This will not be done until next Monday as the facility where it was done cannot get me in until then and the radiologist at the hospital said it would be best to let the wound heal some before irritating the area again. This was fine with me as I was very, very sore and bruised by that time and I wanted it to heal enough to get the steri-tape off as I was having an allergic reaction – red, itching and getting raw in some places from having to leave it on for 2 days. I do have stitches on the inside, but my incisions are sealed with derma-bond and couldn’t get wet for 2 days.

Tuesday was my first treatment day of this next cycle. I get two different chemo drugs on the first day, so I’m at the hospital longer. It was an especially long day again this time, however, with the issue of my port and they sent the wrong drug again and didn’t even have the Doxil in stock. So, I waited while they called the other hospital in town and someone went and picked it up. The first time it happened, I caught the mistake and told my nurse. At least my nurse caught it this time before it reached me. The nurses only made one unsuccessful try for an IV line and then called the ER to have them send up a nurse who was good with “difficult sticks”. He was able to get right into a vein with very little pain. They said they would continue to make sure there was someone available who was good with difficult sticks for me until the issue with the port is resolved.

Thursday night, I noticed a large bump developing right above my port, so had that checked on Friday afternoon and it is just another indication of the problem with the tubing on my port and is noticeable now that the swelling has subsided some. After this appointment, I went over to the hospital to get my treatment. My favorite nurse was there who is really good at getting access to my veins by applying a hot compress to bring up my veins and then using what’s called a “butterfly” - quick, easy, and usually pretty painless, but does require that my hand be taped down and can’t move. I was in and out of there in a little over an hour. The shortest appointment I’ve had so far.

I’m still having quite a few aches and general discomfort from the procedure, and feel a bit of tightness in my vein from the tubing. Healing has probably been impaired with all the handling of the site that has gone on this week. There are just a couple of scabs left from the allergic reaction to the steri-tape, so that problem is healing. Unfortunately, the port protrudes from under most of the clothes I wear and the location on my chest also prevents me from wearing the shoulder strap of my seat belt when I’m in the car. I’m hoping as it heals that will not continue to be an issue and I’ll be able to handle the seat belt crossing over it.

They are going to have to give me a great deal of assurance this looping problem won’t happen again after they fix it this time. If it does, I’m going to have it removed and just tough it out with the IV’s. By the time it’s fixed I’ll be half-way through treatment anyway.

As of Friday morning, we have another little crisis that we need prayer about. The hospital where I've been getting my treatment has been in financial difficulty for some time and for sale. It sold in the last few days and the new owner took over today, November 1. They fired 150 nurses Friday afternoon and who knows how many other technicians. They are still saying the hospital could possibly close, and this new company is known for canceling contracts with insurance companies and trying to break the unions. All employees have to re-apply for their positions. We've also heard that they are in such dire financial trouble that they are on a cash basis for supplies. Maybe that’s why my drugs are never there on time. Anyway, all of that to say we don’t know what’s going to happen regarding my treatment. We don’t know if the infusion center is one of the departments they might close down in order to keep some other department going. We heard they had shut down the oncology floor several weeks ago. First thing Monday morning, we have to start making phone calls to our insurance company, the hospital and to Stanford just in case I need to get the last two treatments for this cycle down there this week while everything gets sorted out. We certainly can’t afford to be surprised with a bill from the hospital because they no longer have a contract with our health insurance company.

Prayer needs for this week: 1) the hospital situation and my treatment; 2) for my procedure on Monday afternoon to try to fix the port; 3) that the Lord will make our path straight and remove these roadblocks we seem to continually encounter. As much as we look to Him in faith and trust, it is very discouraging to constantly feel things aren’t going right and not be able to concentrate on getting well; there is always something that requires time and energy to resolve.

Thank you for your continued diligence in praying for our specific needs each week. We couldn't make this journey without your involvement in our lives!

Food, glorious food

2008-10-25T09:24:00.000-07:00

I borrow my title from the musical "Oliver", one of the musicals we did while I was in college and for which I did the choreography. Fun memories.....

We left home Monday evening to drive to the city for my Stanford appointment on Tuesday. It was good to see my doctor there again. He decided that I should have 4 more cycles of treatment and then another bone marrow biopsy. So, if there are no interruptions, I will complete those by the middle of January, have my biopsy and by the middle of February we should know the results. Yesterday afternoon (Friday) I got the results of the Free Light Chain blood test, which showed there has been good progress so far at reducing the cancer load.

After seeing the chart notes from the infusion center at the hospital, my Stanford doctor said the number of neupogen shots needed to be reduced. He wanted to see how my bone marrow would recover on its own, and that if my white blood count does drop too much, to try just one shot.

It has been a good week. I’ve been able to get out and walk 1 – 1½ miles everyday, and because my blood counts were good on Tuesday, I’ve been able to get out and have a bit of social life. I’m not looking forward to weighing at my appointment with my local doctor next Tuesday cause we’ve eaten out every night this week: a stop at my favorite little restaurant along I-5, Granzella’s, on the way to the city on Monday; out with Jen and Jeff on Tuesday night; dinner with my cousin and wife on Wednesday (Happy 70th, Norman!); birthday club dinner with my girlfriends on Thursday night (Happy Birthday, Charlotte!); out with good friends on Friday night. And that doesn’t include the wonderful food at a wedding reception last Saturday and brunch with the bride’s family on Sunday. However, it will be back to smaller meals and blander food the next 2 weeks as I try to keep my stomach happy while dealing with chemo drugs. But, a little more fun before the drudgery begins again. This afternoon is a trip to the pumpkin patch with our grandson and then he will spend the night so Jeremy and Holly can have a night out. Then we’ll deliver him home in the morning on our way to Ashland, Oregon. We’re going to “officially” celebrate our anniversary and will have brunch and see a live show at the Oregon Cabaret Theater. We always enjoy the great entertainment and musical talent. Afterward, we’ll drive just a little farther north to Medford and visit my aunt (my mom’s sister) at a convalescent home and have dinner with my cousins before we drive home.

Now the trying process of chemo begins again for the next two weeks. On Monday I will be having a port inserted. On Tuesday morning I will see my local doctor and then begin treatment again in the afternoon. It should be much easier and not take so long with the port, as much of my time was spent waiting for them to successfully access a vein. My doctor at Stanford said the port could be removed once we see how I’m doing in February. His opinion was that it didn’t necessarily need to be permanent.

Please pray that all will go smoothly on Monday during my procedure having the port inserted.

Third time is not the charm!

2008-10-18T08:15:00.000-07:00

By last Saturday afternoon, I was beginning to feel the effects of my chemo as the steroids began to wear off. I felt pretty yucky and slept a lot for a couple of days. I was feeling a little better by Monday, but my muscles were very weak and shaky. Neuropathy is setting in again in my feet and the bottoms of them are pretty numb now. I’m noticing some numbness in my fingers as well. I’ve had a lot of aches and pains this week in my muscles, along with the weakness and shakiness. As long as I’m not running a fever and can stand up, I still try to get out side everyday and walk a little.

My treatment on Tuesday afternoon was difficult. It took 7 painful sticks and probes and 3 different nurses to finally adequately get into a vein. The third nurse was the head of the department and they were sure he could find something on his first try, but it took him two tries. I almost started to cry when he started peeling off all the gauze and tape from my left arm to start looking again where I’d already been stuck 5 times. (There was one try on the back of my right hand.)

The oncology nurse at the infusion center is going to have a conversation with my local doctor’s nurse about getting a port inserted before my next round of treatment. It would have to be done the day before my next treatment in order for my blood counts to recover sufficiently to have an invasive procedure done. At this point, a port would be a welcome relief from all I’ve been experiencing with IV lines; but it is still difficult to think about a foreign object permanently accessing my vein. Yes, it would be permanent. It wouldn’t be removed for my type of cancer since it is not curable and treatment would continue on and off for the rest of my life. When I’m not in treatment, I would have to have to it flushed once a month to prevent blood clots, which could happen anyway.

Since they knew it would be my last stick on Friday, they went ahead and used the best vein on the back of left hand again, which just took one painful stick. However, she just used what she called a “butterfly”, which was just an IV needle and didn’t try to insert a catheter. Consequently, she had to tape my hand to the arm of the chair so I couldn’t move it. She thought everything would move along quickly, but it still ended up taking 1 ½ hours because we had to wait for my blood counts from the lab. And, they were counting my blood over and over because my white blood count was very high due to the neupagen shots between treatments. I wish I had refused them – they clearly were not needed.

I was relieved not to experience the shaking chills and fever after my two treatments this week. My body must be adjusting to the Velcade. I do still experience some dizziness, however, and have to be careful that I’m not somewhere without something to grab a hold of when it hits.

My yearly bone density scan was completed this week and I was very happy to learn that my bones are still strong and healthy; a miracle in itself with my type of cancer and level of involvement in my bone marrow, and the use of high dose steroids for my treatment.

This next week is my week off treatment and we will see my doctor at Stanford. By next Friday, hopefully, we will have a report that will show whether we’ve made even a dent in the cancer load so far. We’re looking forward to going on down to Aptos to visit Jen and Jeff for a day, too.

It seems we go through the motions of daily life and trips to the hospital on automatic pilot. We feel pretty numb most of the time. Your prayers support us, and hold us up in ways you can’t imagine as we feel pretty numb spiritually right now, too. You know the Lord is watching over you when a card, phone call or email comes or you run into someone unexpectedly, who bring words and encouragement that you need to hear at the time and it reminds you that the Lord keeps you on their hearts and you’re not alone.

A Meatball by another name!

2008-10-11T08:02:00.000-07:00

My week off treatment ended on a high note. I felt really well last Friday to Tuesday. I was able to do one of my favorite things over the weekend and that is to have a family dinner here with all our kids who still live locally. We certainly did miss having Jen and Jeff with us and they were missing us as well. The occasion? Jeremy’s 30th birthday on October 6th. I fixed one of his favorite meals – Swedish Meatballs. Only, at this house, they are called “Norwegian Meatballs” cause you don’t do “Swedish” when you are living with a man who is ½ Norwegian! And, no cake for our birthday boy – it was Cheese pie with blueberry topping.

There is a story behind these photos of Jeremy with his son Ty on this faux John Deere. The tractor is actually our old riding lawn mower that Steve bartered for payment many years ago from a new widow with limited finances who lived in a mountain town near us and whose only source of heat was a wood stove. She needed the wood stove removed and a conventional heating system installed. The little tractor was a nice set up with a mower, rototiller, and snow blower. The snow blower and rototiller we eventually sold. Now for the rest of the story.

As soon as the boys were old enough, we began to let them help with the mowing on the riding lawn mower. However, we had a lot of rocks around here at the time in the areas that were still pasture grass but were not part of the pasture anymore. We were keeping those areas mowed along the periphery of the property. The boys weren’t as diligent as they should have been to watch for rocks and, consequently, the mower had gotten broken several times and after the last repair they were warned the next time it broke it would be parked and they would be walking behind a mower. Unfortunately, it was Jeremy who did the dreaded deed soon after the mower returned from the repair shop for the last time. Those years are such a blur, but our best guess is that the mower has been parked in the barn for at least 17-20 years. Now that we have this cute little grandson, Steve has resurrected the tractor, made the necessary repairs, and took the mower off and has turned it into a “John Deere” for our Redneck Disneyland ride for Ty and Jeremy finally was allowed to drive the tractor, minus the mower, again on his 30th birthday! A good time was had by all!

We saw the doctor on Tuesday morning before my first treatment of this next cycle. He didn’t have much to say and really didn’t respond to our inquiry regarding a port. So, we are continuing with the IV’s for now. I will see my Stanford doctor at the end of this cycle and will have a more thorough assessment from him.

My first week of this cycle of treatment has gone fairly well. It was a quick stick for a vein on Tuesday, but yesterday (Friday) was a rough one. Two unsuccessful tries on the back of my hand and along my wrist with lots of pain and poking from a new nurse, but thank goodness no bruising has appeared so far. My regular nurse finally took over and got right into the vein on my forearm on the third try. The side effects continue to be minimal due to the steroids I take during this week. Between the steroids and the Doxil, I do have quite a bit of heartburn and have to be sure I don’t miss my doses of acid reducer. My blood counts have been good so far this week and we’re pleased with the recovery my body made during the rest cycle to bring all my numbers back up. Of course, the Neupagen shots really increased my white count above normal, but the red count and platelets have recovered well on their own.

We appreciate your continued interest in our lives during this difficult time and, most of all, your continued prayers for successful treatment, health and healing.

My week "off"

2008-10-04T12:57:00.000-07:00

Well, it was a week off treatment but not a week off needles. On Tuesday morning I had to have blood work done to see where my counts were at following treatment. The drugs are out of my system after a few days, but the effects of the drugs peak anywhere from 7 to 14 days following treatment. My counts were very low so I had to go into the hospital for Neupagen shots (shots that force your bone marrow to make more white blood cells) on Tuesday, Wednesday and Thursday, and Friday morning for another blood test. I am grateful that I didn’t have the usual side effects from the Neupagen shots, which is bone pain. My white blood count is now way above normal, so I think things went over board with the shots this week. My platelets are recovering on their own and are now back up in the normal range. But as usual when my bone marrow is busy making white blood cells, the number of red blood cells and hemoglobin drops.

By last Monday I was starting to feel better, although my body still felt a bit like a lead weight when I tried to go for a short walk. But by Tuesday, I was perking up and I have improved as the week has progressed

I see the local doctor on Tuesday morning and will talk to him about maybe waiting until the last few days before I begin the 3rd cycle of treatment before the decision is made regarding the necessity and number of Neupagen shots next time. We’ll also discuss the issue of a port again with him, but it will be too late to have it done before this next treatment cycle.

Thanks for your cards, notes and phone calls this week. They are greatly appreciated.

Please pray that my veins will hold up during the next cycle of treatment and that they will be easily accessible.

My life on drugs

2008-09-27T08:38:00.000-07:00

Our 33rd wedding anniversary today, but it will be spent recovering from chemo. We kept hoping we might be able to at least go over to the coast for a few days, but it’s not going to happen. Our lives are consumed with treatment and taking care of ourselves and our place, but we are grateful for having shared another year together.

This second week has certainly been more difficult. I’ve endured multiple sticks with IV needles while they tried to find different veins to use on the backs of my hands, along my wrists and forearms. I have a lovely large bruise on my forearm that hopefully will clear up before the next cycle begins again.

People usually associate chemo side effects with nausea, but that is easily treated in this day and age, so I have not had to deal with that. However, I’ve not been without side effects from my drug this week. Within 12 hours, the shaking and chills begin as my body temperature begins its slow ascent from my low basil temp in the 96-range up close to 101. As it rises, my head begins to feel like it’s in a vise and a knot develops in my stomach. By the next morning, the diarrhea sets in. The fever seems to last for the next 24-36 hours. I don’t know if the fever makes me feel weak or the drug. By the third day, I’m pulling out of it, but don’t have a lot of stamina. Tylenol does help reduce the severity of the reaction, but they didn’t want me to take it on Tuesday until they could assess my response. I was able to take it yesterday and last night and it has helped some.

I received chemo on Tuesday, was given shots on Wednesday and Thursday to increase the white blood count and then chemo again on Friday. The shots did bring up my white blood count significantly. However, as always, the red blood count and my hemoglobin dropped. Also, the drugs have caused my platelets to drop below normal, so I have to be really careful about injuring myself.

So now begins my 10-day rest before the next cycle of treatment. I’ll see the doctor this week and get my IVIG infusion. The oncology nurses have suggested getting a port, so this will be discussed again this week with the doctor.

Thanks for your thoughts and prayers.

Treatment week 1, Cycle 1

2008-09-22T07:22:00.000-07:00

The week has gone fairly well. The high dose steroids kept most of the side effects under control from Tuesday’s treatment. However, the Doxil appears to be affecting my feet as did the Revlimid. I’m not having any increase in neuropathy at this point, but I am having some subtle hints that I might develop a side effect called “hand and foot syndrome”. This begins with itching and burning from any heat or pressure on the hands or feet and can progress to blistering and peeling. If it reaches the blistering and peeling stage, treatment generally is stopped until it clears up and the dose is often lowered when treatment begins again. I did notice some burning and itching on my feet this week, so have to be careful to get off of them as soon as I have any symptoms. The literature I have read says to be very careful with your hands and feet for 5 days following treatment with Doxil.

Friday’s treatment went quickly and smoothly, although I’ve had some dizziness to deal with from the drug I received on Friday.

The biggest challenge now has been dealing with the side effects of suddenly stopping the high dose steroids. I’ve been very shaky and sleeping most of the weekend. My body doesn’t know what to do and my adrenal glands are trying to figure out if they’re supposed to be functioning or not.

Treatment - Finally!

2008-09-16T23:00:00.000-07:00

I finally began treatment today, but what should have only taken a few hours took all day. We were there from 10:30 until 6:15! Fortunately, they did bring us a menu from the cafeteria and ordered lunch to be brought up to us. When we arrived at the hospital we had to go through the routine of getting registered and a ID band made for my wrist and deal with insurance. However, we still have no idea what might be expected from us in terms of co-pays or even how much my treatment will cost. We do know that we are in the most expensive hospital in town and my drugs are a fairly new and novel treatment protocal for myeloma.

When we finally arrived at the infusion room, we found every chair full and people waiting. It took an 1 ½ for the nurse to go over my records and treatment plan and get me to the lab for my blood test. Then it was at least another hour before those results were ready. But by then the room had pretty much cleared out and there were just a few of us left. We were pleasantly surprised to find my white blood count the highest it has been in 3 years and my neutrophils were up in the normal range! Of course, other blood counts were well below normal to compensate. But this meant that treatment could begin and there was room for the normal drop in the white count that would result from treatment without going so low that treatment would have to stop.

My interest in gaining all the knowledge I can regarding my disease, treatment protocols and drugs used in treatment really paid off today. Doxil is a drug given only on the first day of my treatment. It is a reformulated version of a chemo drug that has been used for years: Doxirubicin also known as adriamycin. Doxil encapsulates the drug giving it a much more effective and targeted ability in attacking the actual cancer cells. It is extremely important that it not be confused with Doxirubicin in the treament setting as the dosages are different and Doxirubicin given at the dosages of Doxil can create a very serious situation which has on occasion been fatal. After being given an information sheet on Doxirubin and being told Doxil was just a brand name for that drug, I did mention that I was supposed to be getting the encapsulated form of the drug. The nurse then checked her computer to verify if there was a difference and confirmed my information. She then called the pharmacy regarding my drugs that were needed to begin treatment and discovered they were getting ready to send up Doxirubicin and they didn’t have any Doxil in stock!! So, this created another delay of 2 hours while they located some Doxil at another hospital and sent someone to pick it up. It pays to be an informed patient!

So, from now on, we will go in the afternoons for my treatments when the infusion room is not so busy. We also know that my treatments will just take a few hours in the future now that all the “bugs” are worked out. Our plan is to go to the lab just before noon, go have lunch then go to the infusion room to begin treatment. The other drug I will be receiving 4 times (2 times each week for 2 weeks then 1 week off) is called Velcade also known as Bortezomid. It just takes a few minutes to administer, but if they administer anti-nausea meds first it will probably take 30 to 45 minutes. Doxil days should just take about 2 hours in the future.

I’m feeling pretty well so far this evening, but then I do have 40 mg of Dexamethasone on board (high dose corticosteroid) that may help alleviate some of the side effects and I received anti-nausea meds by IV today. I was told the Doxil side effects most likely won’t hit for 48 hours.

Thank you for your prayers especially today. I will keep you informed of my progress this week.

I often wonder how people who don’t know the Lord manage with a life-threatening disease. We hold fast to Him in good times and bad and even when we are discouraged His peace does prevail.

Another roadblock; but moving forward again?

2008-09-10T16:25:00.000-07:00

I did not start treatment this week as we had hoped, but I am scheduled to begin next week. The drugs I will be getting are not standard drugs that are “in stock” at chemo infusion suites, doctor’s offices or hospitals. They have to be specially ordered. They also require special authorization from the insurance company. (Can’t wait to see the price tag on these?!) This has created a delay while an infusion center or hospital was located that would administer my drugs and all the paperwork was completed. The nurse I am dealing with at the doctor’s office is so nice to work with and has been very helpful.

Another phone call to Stanford tomorrow to clarify a couple of things and contact with the local hospital to set up my appointment and, hopefully, treatment will begin next Monday or Tuesday.

Now the challenge will be to stay in treatment. My white blood counts are already quite low from the spread of the cancer and they have to be at a certain level to receive treatment. Chemo will further reduce their numbers. My numbers have been borderline or below the accepted level for most of the past 5 months.

Our health insurance company has a free service available for patients with difficult cases in which they provide a nurse advocate. We were very happy to be contacted and hear about the availability of this service after all that we’ve had to deal with on our own. We will be meeting with her on Friday.

Thank you for your prayers. Steve and I are beginning to pull out of the slump we’ve been in for several weeks.

The continuing saga......

2008-09-05T11:49:00.000-07:00

A lot has happened over the past 10 days, but I will give an abbreviated version of where things are as of today.

My blood cultures were negative. The doctor here decided it must have been side effects and my nurse at Stanford disagrees and has never seen or heard of side effects that severe from the drug I was given. A virus maybe? Anyway, we have had some difficulty with communication with the local doctor, a contributing factor being that she only works part time; something we didn’t know until after we met with her. Since we have not been able to make our schedule fit her limited schedule we have had to change doctors. Thanks to my friends in the medical community we were able to get in with a doctor who has worked with Stanford before, and, in particular, with my doctor at Stanford. He will be my conduit here and carry out my treatment as directed by my Stanford doctor. Phone calls and faxes are going back and forth to get everything set up for my treatment to begin again next Tuesday, September 9. I will be having my treatments at one of the local hospitals, so we will be able to set a schedule that will be accommodating to our schedules. This new doctor does not agree with the use of a permanent port for chemo at this time, which is what I was told at Stanford – that a port would not be necessary. So I’m relieved we don’t have to wait on this procedure to get going again with treatment.

The past 10 days have been very difficult and discouraging. Thanks again for your prayers, phone calls, cards and emails, which keep us going when the going gets tough.

One treatment and on hold again!

2008-08-26T16:24:00.000-07:00

We quickly got things set up for treatment here in town, but the rush did create some issues that we’re still trying to get organized regarding prescriptions, lab work and other follow-up test scheduling. Fortunately, I am a well-informed patient and have been able to stay on top of everything that needs to be put in place from various locations. I think we’re close to having all my lab work that has to be done at various times organized so that I can maximize each blood draw. I’ve had quite a few draws this past week, plus two IV needles yesterday. I heal so slowly due to my cancer that you can see the marks from the needles for many days afterward, and I have to be diligent that the location doesn’t bruise.

I had my first treatment yesterday (Monday) and was supposed to have my port inserted today so treatment with a much more toxic chemo drug could be administered on Thursday. However, by evening yesterday I had a terrible headache and as the evening progressed, shaking chills, severe aching in my body and fever of 101.7 became unbearable by 4:00 am. At 5:00 am I was supposed to suspend eating or drinking anything to be prepared for my procedure today. I hadn’t taken any aspirin, tylenol, etc., as I was told not to take anything like that prior to my procedure. At 4:00 am I had to call the doctor for advice. She told me to go ahead and take some tylenol and cancel my procedure. I knew that it was critical that I stay hydrated with a fever, and she agreed it was very important. Other than a little intestinal upset this morning, I am fortunate that I have not had any nausea to deal with; although, anti-nausea medication was administered through the IV prior to receiving my chemo drug.

When I spoke with my doctor early this morning, she was hopeful that it was just a reaction to the chemo and if it was, it should resolve within 24 hours. To be on the safe side, she ordered blood cultures to be done and started me on antibiotics. My fever has come back up this afternoon, but not quite as high as last night.

So, treatment is on hold again. I have to get over what ever ails me before they insert the port and I can have anymore chemo. She did tell me that due to my low blood counts and almost non-existent immunoglobulin levels, it was going to be very difficult to treat me.

We were pleased to learn the results of the skeletal survey that showed no lesions had formed in my bones. However, a bone density needs to be done next which will show if my bones have become osteopenic, a precursor to osteoporosis. This can happen from the cancer and/or from all the high dose steroids. When my bones reach this point, high dose bisphosphonates will be administered by IV once a month.

Thank you for your phone calls, emails and cards. It really lifts our spirits to be reminded that we are not alone in this battle and that your thoughts and prayers continue to be with us.

Bone Marrow Biopsy Pathology Report

2008-08-20T17:13:00.000-07:00

We didn’t get good news this week when we went to Stanford to learn the results of the most recent bone marrow biopsy. The cancer has increased dramatically and things are happening quickly to get me into a much more aggressive treatment program right away.

In order to accomplish the suggested regimen, my Stanford doctor requested that I find a local hematologist that would work with him so he could direct my treatment from there and receive treatment here. My primary doctor mentioned recently that there was a new hematologist/oncologist in town and she was impressed with what she had seen so far. After also talking with the director of nursing at one of our local hospitals, we decided to see if this would be a workable solution. We met with her today and did like her. Every doctor has their own ideas about treatment, but she has worked successfully with doctors from U.C. San Francisco with some myeloma patients, so we are encouraged that she will work well with my Stanford doctor. She is anxious to begin my treatment next week.

I will be having chemo twice a week for 2 weeks and then 1 week off. Two different drugs will be administered (Velcade and Doxil). I will also continue taking high dose steroids once a week. With the level of involvement of cancer in my bone marrow (at least 60%) there is now concern that it is or will soon invade my bones. So, tomorrow I will have another complete set of x-rays of every bone in my body to confirm whether my bones are still healthy or whether lesions are beginning to appear. To prevent any further damage to my bones, I will be started on a once-a-month infusion of a high-dose bisphosphonate. This is like Actonel or Fosamax multiplied many times.

Because one of the drugs I will be receiving is very toxic, I will have to have a port put in through which my chemo drugs will be administered. This can be done on an out-patient basis, but will take about half a day. My local hematologist assured me treatment could begin before this incision has healed, which will take about 2 weeks.

My blood counts continue to be low and is a concern for treatment. However, the low counts are due to the cancer spreading and they won’t improve until there has been some success with treatment. If they drop much lower, my Stanford doctor did assure me there were medications that could be given to improve their numbers so treatment could continue.

The side effects: nausea (which can be helped with medication), hair loss (covered by a new wig or decorator bandanas), and neuropathy of the hands and feet (a big concern since I already have had trouble with my feet). There are also some other possible side effects which I won’t go into now. I have been assured that quality of life will be protected as much as possible while trying to get the cancer under control.

Needless to say, we are struggling with this news. The road ahead looks rough. We covet your continued prayers and know that through it all He still has His hand upon us.

Ty Time

2008-08-14T14:36:00.000-07:00

We’ve been keeping our grandson, Ty, two days a week to help Jeremy and Holly with child care while they work and try to catch up after being unemployed for several months. We’re happy to report that they both have good jobs now. We’ve really enjoyed our time with Ty, and it has certainly helped the days pass as we await the news we’ll get at Stanford on Tuesday. Ty brings a lot of joy to our lives. Here’s a little snapshot from the other day. Ty is 9 months old now and the puppy is 9 weeks. The puppy is a pure bred Jack Russell Terrier, the last one of a litter, that is for sale. The baby is not for sale for love nor money! Enjoy!

2nd Bone Marrow Biopsy

2008-08-08T17:26:00.000-07:00

Many of you were praying on Thursday morning during my 2nd bone marrow biopsy and I am happy to report that it went smoothly. In fact, it was the “least painful” one I’ve had so far. The Nurse Practitioner at Stanford, who does bone marrow biopsies everyday, agreed that the biopsy needed to be taken from a different location as the previous three (2 last summer and the most recent one) had all been taken from the same location in the right hip. This one was taken from the left hip and she was able to get plenty of marrow quite easily. In fact, I was very happy to be able to donate marrow to the myeloma research program, knowing that even if it doesn’t immediately benefit me it will benefit patients in the future. They were especially happy to receive marrow from me, as the morphology (form or structure) of my marrow does not have the usual appearance for myeloma. This is what made it difficult for my initial diagnosis.

My blood counts continue to be low and do cause concern and caution for daily life. I do all I can to minimize my exposure to anything or anyone that could possibly contaminate me. Everyone has been very understanding, however, now that I am officially a “germophobe”!

I live each day depending on the Lord for His strength and protection of my health and am grateful for all of your prayers.

Schedule of Events

2008-07-31T16:10:00.000-07:00

I am now scheduled for another bone marrow biopsy on Thursday, August 7, at Stanford. I will see my doctor for the results on Tuesday, August 19. At that time, the next treatment plan will be determined. I do know there will be additional treatment and most likely a more difficult road is ahead.

The results of my Free Light Chain Assay were available today and my cancer load has not only increased over the last few months, but is now also higher than it was in October when I was first seen at Stanford. The pathology report on the small sample of bone marrow that was taken here in town two weeks ago also indicates the cancer has increased from last summer. However, there was not enough marrow for my doctor to determine how my particular prognostic markers were responding to this initial treatment. It would seem that the response has not been good; but then, I’ve also been in and out of treatment so much there has not been enough consistency. This has just reinforced what we already knew – that my particular type of myeloma was going to be difficult to treat. The information regarding prognostic markers is very important for my treatment. The latest research and discoveries are targeting 5 different prognostic markers in myeloma patients. Treatment plans are being designed that will bypass these areas that would inhibit a particular drugs effectiveness and be able to target the cancer for successful treatment.

I am very thankful to have the opportunity to be treated at a medical facility that not only consults with researchers in other facilities, but also keeps up on the latest treatments and pursues their own research in these areas as well.

Thank you for your continued prayers and interest in our lives.

Another Delay

2008-07-30T10:57:00.000-07:00

We just returned from my appointment at Stanford and my suspicions regarding the bone marrow biopsy done here in town 2 weeks ago were accurate – it was inadequate. So, my doctor is ordering another bone marrow biopsy that will have to be done at Stanford this time. I will know by the end of this week when that is scheduled. Then it will be at least two more weeks following the biopsy when I will see my doctor for the results. Treatment is suspended until my doctor has the results of the bone marrow biopsy and can decide what is next.

My blood counts were busy doing their little jig again this week, so not much change in the white and red blood counts; but I was happy to see that the neutrophils had increased quite a bit. This is a good thing since they make up 50-70% of your white blood cells and are the first cells to arrive at the site of an infection. They are an important part of the immune system and are watched closely in all cancer patients receiving treatment. In my particular type of cancer, monitoring their numbers is critical since they are already below normal and often below the allowable number for treatment.

When I went for my blood work at the Stanford lab prior to my appointment, I had the same lab tech that neglected to send my blood for the “Free Light Chain Assay” at the end of April. This blood test is one way my cancer is monitored; the other being the bone marrow biopsy. She commented that I was just getting a CBC (Complete Blood Count) this time. I mentioned that I was supposed to also be having the Free Light Chain Assay, so someone checked and verified that “yes” it was to be done. However, she didn’t mark the orders for the change, so I hope it is getting done. These numbers have not been checked since the first part of April and the doctor mentioned during my appointment yesterday that he was anxious to see what those numbers were when the report comes back later this week. Please pray that this blood test gets sent to the Mayo Clinic for analysis and isn’t overlooked as it was at my appointment at the end of April.

It is now a little over a year since I received my diagnosis. As I look back over that time I realize that I continue to be plagued by one road-block after another regarding my initial diagnosis, and now treatment and care. It is very difficult not to be discouraged. My faith and knowledge that I am in the Lord’s Hands and that my life is under His control gives me the peace I need in these circumstances.

Post Wedding

2008-07-17T09:11:00.001-07:00

My blood counts last Friday, 2 days before the wedding, were the worst numbers I’ve had. They were lower than when I was diagnosed a year ago. I should have been almost non-functional. There were many times when I got fatigued and had to keep going that I would feel like I was on the verge of getting sick, but the antibiotics protected me and provided me with the protection I needed for being around so many people with such low resistance to any illness. But, thanks to all my prayer warriors, my energy level over the weekend was an absolute miracle and I didn’t get sick! There was so much to do and so much of it on my shoulders to do or delegate and yet I was able to function at the level of a healthy person, not someone with cancer and in treatment. The wedding was beautiful and things went smoothly after all the work at re-arranging for a new location.

On Monday, I completed the 6th cycle of this treatment plan. On Wednesday, I had my bone marrow biopsy, the results of which will determine the next course of treatment. My Stanford doctor agreed to let me have it done here in Redding. We were so grateful that we didn’t have to drive down to San Francisco early Tuesday morning. However, the pathologist had a difficult time getting any marrow and had to drill twice to get even a little bit for all the tests that need to be performed. Please pray that the bone marrow sample will be adequate and another one will not be required in the immediate future. I was quite sore yesterday, but doing better today as long as nothing touches or puts pressure on the location.

I continue to live one day at a time with the strength the Lord provides. He is my source and my strength. Don’t ever doubt the effectiveness of your prayers! I experienced supernatural energy when I needed it this past weekend.

O Canada!

2008-07-05T18:55:00.000-07:00

Thank you for sending your big Martin Mars water tanker airplane to help us with our fires! It lands on Shasta Lake approximately every 25 minutes and scoops up enough water to soak 3-4 acres at a time. The lake is still open to boaters, but they are warned to stay away from certain areas to leave the space open for the plane. Although some containment has been made, there are still many fires in our county that are un-staffed.

The smoke continues to be a problem, worse some days than others. Consequently, Jen’s wedding has been moved indoors and into town. We had to cancel out on the outdoor ranch setting in the foothills. We’re hoping to create an “outdoor” atmosphere at the reception hall in Redding where the wedding and reception will now be held. We are so grateful we could find such a nice location on such short notice. However, it’s been just a little stressful the last few days getting postcards mailed and phone calls made to notify our guests of the change. Although we’ve thought through many details, there are still a few things to figure out and it’s going to take another visit to the location before we have peace that we’ve got everything covered.

My weekly blood test shows my neutrophils continue to be low. Not much change from the previous week. My white blood cells and red blood cells seem to do a little jig every week – when one is up a little the other is down and visa versa. However, I am continuing in treatment with caution so I stay healthy. I am being scheduled for a bone marrow biopsy, which they are anxious to get done and the results back before my doctor leaves on vacation the first of August. That means they are trying to squeeze me in on July 15. Now doesn’t that sound like fun? A 500-mile round-trip drive in the car so I can have someone go boring into my hip two days after the wedding?!

Even though these consistently low numbers in my blood counts would seem to indicate the cancer load has probably returned to the same levels as last summer when I was diagnosed, we are continuing to pray that they will find 100% normal bone marrow when they do the biopsy. Please continue to pray with us for healing and health for my body.

Weekly Update

2008-06-28T01:56:00.000-07:00

Every Friday I am very thankful for the excellent lab tech here in Anderson who draws my blood and I hardly feel a thing! This week's results show that my white blood count and my neutrophils have improved slightly, although my neutrophils are still lower than the standard for continuing treatment. My red blood count and hemoglobin have also shown a little improvement this week. So, I will continue this treatment cycle and continue to be very cautious about staying healthy.

We continue to deal with very smoky conditions, although there has been a little improvement from last weekend. More thunderstorms are expected this weekend in the mountains and, as of this morning, there were still 24 fires that were unattended in our county as all the manpower from California and several other western states were fighting other fires. There are currently over 1,000 fires burning in California.

We spent some time this week figuring out how we would implement the wedding and decorations in the alternate location that are already planned, made and/or purchased, just in case we have to make a change at the last minute. Jen is still hoping the smoke might clear out in time for her wedding, but she feels good about our alternative. We’ve left messages for the owners of the ranch this week, where the wedding is scheduled, but no one has returned our calls yet. We don’t know what the status of things is in their immediate area.

Thanks for your notes this week that always encourage me that others are thinking of me and sending up prayers.

California burning!

2008-06-24T20:26:00.001-07:00

For those not living in our immediate area, you have probably still heard the news about all the fires burning in Northern California, 842 at last count, with approximately 140 of those in Shasta County where we live. We had a thunderstorm blow through over the weekend, which brought between 5,000 and 6,000 lightening strikes that started it all. The air is unbearable it is so smoky and the sun is an orange/red ball in the sky. Needless to say, this kind of poor air quality is not good for me in my condition. I stay in as much as possible with our air conditioning and air purifier running. But with the wedding less than 3 weeks away, there is much to do.

The fires and smoke have presented us with an unexpected problem in regards to the wedding. It is an outdoor affair at a ranch in the foothills about 26 miles east of Redding. There are fires all around that area and, as a consequence, the smoke is very bad there. There are more thunderstorms predicted for the next two weekends. Unfortunately, after a very dry spring, conditions are such that more fires are quite likely. We decided it would be a good idea to have an inside alternative in Redding ready for the wedding if it is too smoky or if roads might be closed due to fires. So, we have reserved our church and another location for the reception, just in case. Both places penciled in our request and are not asking for a deposit at this time, for which we are grateful.

So, now what’s happening with me in the midst of all these unexpected events. Even though my neutrophil count is lower than it should be for treatment, the doctor has decided to go ahead with this 6th cycle. So, I began my treatment yesterday and will finish the day after the wedding. I will continue to have weekly blood tests to monitor my blood counts since I am starting out so low.

I saw my primary doctor today who has put me on a low dose of antibiotic for the next 3 weeks to help protect me during treatment. She was quite concerned about the irritation from the smoke getting an infection started that we couldn’t get on top of quickly enough with my low numbers. She realizes how important it is that I stay healthy with the wedding coming up. She has also ordered an inhaler for me to help keep my lungs open.

Please pray regarding all the fires that are destroying so much property and for our decision regarding the wedding location. Pray also that I can stay healthy in spite of my low numbers and will continue to have the energy I need over the next few weeks.

Treatment on hold again

2008-06-20T19:30:00.000-07:00

My weekly blood test, done this morning, shows that my blood counts have dropped significantly since last week. In fact, they are lower than they’ve been since December. My counts seem to improve when I’m on antibiotics and within days of finishing them, the counts drop significantly. My drugs arrived on Thursday and now I can’t take them. I am waiting to hear from the doctor on Monday. My numbers are so low that I can’t be out and around crowds much and have to be very careful that I’m not around anyone who is ill.

We look to the Lord with trust that His hand is in this delay in my treatment again. We really need your prayers!

Treatment Cycle 6 - at last!

2008-06-17T20:21:00.000-07:00

Things are finally improving. I was started on another round of antibiotics 10 days ago, as it had become quite clear that I still had a sinus infection. My weekly blood test last Friday showed significant improvement in my numbers. I spoke to my oncology nurse on Monday evening and the doctor is going to go ahead and order my cancer drug for this last cycle of treatment. It will be here by Friday when I have my weekly blood test. They were quite confident that my numbers would be back where they need to be by Friday and I could begin this last cycle of treatment. The only drawback is that I will now be in treatment during the wedding. Please pray for my energy level as the drugs can make me quite fatigued.

The Saga Continues.....

2008-06-08T06:16:00.000-07:00

My weekly blood test on Friday was discouraging. My blood counts are lower than the previous week, so I continue with no treatment. My oncology nurse is wondering if there is still infection that didn’t completely clear with the last round of antibiotics that is keeping the numbers low. She was unable to consult with my hematologist as he is out of town until Tuesday. She is taking a day off next week on Tuesday, but said she would leave my file with a note for him. Hopefully, he will have time to review my file, see the note she left him and have her substitute call me on Tuesday. He is only in the clinic on Mondays and Tuesdays as he also teaches at Stanford University, conducts research and supervises the research projects of Doctors serving Fellowships in Oncology/Hematology.

Tomorrow is my monthly gamma globulin infusion, so maybe that will give my body a boost to fight whatever ails me.

With my blood counts so low, my energy level has taken a dive also. With just a few weeks until Jen’s wedding, I need my energy to help with final preparations for the big event and to get our house ready for all the family who will be coming from many parts of the country. I’ve enlisted the aid of one of my choir families who will come at least twice prior to the wedding to help with housework and some “spring” cleaning. They are great workers and are always looking for ways to earn money for their twice-yearly missions trips to Russia and now India.

My brother, Chuck, was just diagnosed with Chronic Lymphocytic Leukemia and began his treatment last week. We are encouraged to know that this type of cancer is usually very responsive to treatment, so we are hopeful for a lengthy remission following his treatment. So if you think of him as you pray for me, please offer up a prayer for him, too, and for our families who are dealing with this news.

Weekly Update

2008-06-02T13:07:00.000-07:00

Had my weekly CBC last Thursday and my numbers had come up just a little, but not enough to return to treatment. However, my doctor did tell me I could go ahead and go out of town on my yearly trip to the Shakespeare Festival in Ashland, Oregon, with girlfriends. I’m already aware of all the precautions I am to take and carry a thermometer, as a fever would require an immediate trip to the emergency room.

On Friday morning, about two hours before departure, my 3 friends from Redding, (who are all related to each other), called to tell me they were all sick with the same virus I was just recovering from and couldn’t go. This virus has become an epidemic in our area according to their doctor and is highly contagious. (Jen is recovering from the virus and Steve is just coming down with it.) The two friends from Portland were already on their way. So, I ended up making the 2 ½ hour drive myself and arrived just in time for our matinee that afternoon. We saw Shakespeare’s Coriolanus on Friday, and on Saturday afternoon we saw The Clay Cart, translated by J.A.B. van Buitenen; a story that takes place in India about 2,000 years ago. My Portland friends left for home Sunday morning, and I enjoyed a musical called Altar Boyz at the Cabaret Theater that afternoon. My cousin, Sandi, was available and came down from Medford to join me.

My energy held up quite well as we shopped, watched plays and ate good food; but, I was getting a little fatigued by Sunday afternoon. I was grateful to my cousin of her offer to stay overnight with them and drive home Monday morning (today). So the bonus was a visit at the convalescent home with my Aunt Mae (Sandi’s mom) and spending the evening with Sandi and her husband, Allen. I was quite refreshed as I drove home early this morning and arrived home just as Steve and Jen were getting breakfast.

I am so grateful that I could get out and enjoy my annual trip. It was great fun to see my friends, my cousin and aunt.

Thank you for your notes of encouragement and continued prayer support. I will post again after my blood test on Friday.

Down a slippery slope

2008-05-24T06:13:00.000-07:00

After being off antibiotics for 16 days from my last infection, I am now on another more powerful antibiotic for a tripleheader: bronchitis, sinusitis and ear infection. The week after Jen’s Bridal Shower, which was May 10th, I wasn’t feeling very well. My high dose of steroids always suppresses my immune system a little more when I take them and after taking my steroids 6 days after the shower, my illness hit me big time. Three days after my steroids, on Monday, May 19, when a slight fever began to show up, I finally headed for the walk-in clinic. I am slowly improving and beginning to feel a little better, but I had another dose of steroids yesterday and am hopeful they will not impede my progress.

We had a wonderful time at Jen’s shower on Saturday afternoon, the day before Mother’s Day. About 35 friends showered her with many generous gifts. The “girls” (Johanna, Holly and Lyn) served strawberry shortcake using strawberries Steve picked up fresh at the local fields. I put together photos from Jen and Jeff’s families of the parents, grand parents and great-grandparents showing the number of years each was married. Our side had formal wedding photos from each of those generations. Jeff’s family supplied what snapshots they could from when each of those generations were young and newly married. Jeff’s ancestors come from Portugal and Italy and there weren’t photos and records available very far back. But it still was a great hit. Also, we displayed three generations of wedding gowns using my mother’s gown, my gown and Lyn’s gown. Both displays made for fun and interesting conversation.

I’m not the only one who got ill following the shower. Lyn got sick about the same time I did and Jen got up this past Monday morning and was getting sick. However, she still drove the 2 hours to the Sacramento airport and back on Monday afternoon to pick up our friend Elke, from Belgium, who was stopping over for a day on a trip up the west coast. Elke’s schedule was so busy, she was thankful for a day to just sit around with us and visit. By Wednesday, Jen was much worse and Steve drove Elke back to the airport on Wednesday morning. We were so excited for her visit, but were so bummed we were ill. But, we did have a good visit in spite of everything. We prayed for Elke as she was leaving for the airport and included a prayer she wouldn’t get sick! Our homespun theory is that someone must have been contagious at the shower where we all got exposed.

I rested on Wednesday as much as I could and was beginning to feel a little better. However, my “mini” choir concert was scheduled for Thursday evening and I had to decide whether I was going to be well enough to muddle through it or cancel it. I decided by Wednesday afternoon I could make it through. In March, when my numbers were improving, the doctor said I could begin to return to some of my activities part time. So I contacted my moms who help me with choir and we put together two choirs (one with 51 students and the other with 26 students). We met for 9 weeks and the 10th week was our concert. It was exhilarating and exhausting at the same time. It felt so good to be doing what I love to do even on a limited basis, to be in contact with my choir families again, and to feel creative and productive. Each choir learned 4 pieces in that time. In order to make the concert an hour long, I asked three talented students to do specials for us: a vocal solo, a flute solo and a piano solo by our very talented 15 year old accompanist. The concert went well and I even managed a trip to In-N-Out for a cheeseburger afterward. Yes, I was a little overdressed in my black dress and heels, but I knew half the families already there!

Tuesday, May 27, would have been my monthly visit to Stanford. Due to the Memorial Holiday on Monday and because I’ve been doing well with my cancer drug, they told me I could skip this appointment and have a CBC (complete blood count) done locally and send the results to them. Since I have such a short window of time between getting my labs done and my cancer drug ordered and shipped in time, I decided to go in yesterday. We had the results by noon and they weren’t very good. After receiving a copy of my labs my oncology nurse called to tell me my treatment would have to be suspended, as my numbers were too low to continue. My white blood count was quite low, my red blood count was actually a little improved from the last test, but, for the first time, my platelets were below normal. I now will have a CBC weekly until they come back up. She suspects the low numbers may be due to my illness, but you would think the white blood count would go up instead of down if I have infection. So there is concern that everything has gone down.

As you can imagine this is very discouraging news. My treatment schedule was going to work out perfectly for the wedding and now we don’t know what’s up ahead. My bone marrow biopsy may be moved even close to the wedding and, as it was, I was just going to have sufficient recovery to be able to sit in a hard chair for any length of time. We’re continuing to pray for healing and to believe that it will come soon, but this past month I have been going down hill. We covet your prayers in the weeks ahead.

To end on a happy note, we’ll be babysitting our grandson, Ty, this weekend while his parents enjoy a couple of days on the lake with friends. Jeremy has been going through a lengthy interview process with a finance company that finances and provides leases for all kinds of heavy equipment used by various types of businesses, such as construction companies. He finally has been hired and will begin his new job on Wednesday, May 28. So as not to be caught without something to fall back on again, he is going to study for his insurance licenses also. He has really enjoyed his time at home with Ty and is such a good dad, but he is ready to get back to work. A lot of work will be from home and on the days he has to be gone, there are enough grandparents who are retired to care for Ty.

Is no news really good news?

2008-05-06T09:59:00.000-07:00

Last Tuesday, April 29, was my appointment at Stanford. I see the doctor every 4th Tuesday and since there were 5 Tuesdays in April, I actually had two appointments in the same month. I was most anxious to know my lab results, especially to know if my cancer numbers were continuing to go up or if they would come back down. But I ended up with basically no news. Here’s what happened:

Two weeks before my appointment, I developed a very bad bladder infection. I had a standing order for antibiotics from an urologist I saw last fall. But the three-day treatment barely had any effect. After suffering for several more days thinking the treatment would still kick in, I went to see my primary doctor. She put me on a much stronger antibiotic for 6 days. I immediately had improvement. However, I had just started the second round of antibiotics the day before my Stanford appointment. As a result, the infection skewed my blood counts and several areas on my metabolic panel. Obviously, my white blood count was up due to the infection, but my hemoglobin was back down again. It seems that when I need white blood cells to fight something the red blood cells take a back seat and their numbers go down. The normal functioning cells can only do so much and they try to produce what I need at any given time; consequently, there is fluctuation in their numbers. However, you have to understand that even though these numbers are going up and down, they are still all below normal.

The most important numbers that we watch each month is the cancer count. And wouldn’t you know, the lab tech neglected to send my blood for the special free light chain test that assesses my cancer. I heard this discouraging news late Monday afternoon from my oncology nurse. We’ve been conversing via voice mail over the last few days and haven’t actually had a conversation about all of this.

At my appointment last Tuesday, my doctor gave me “the plan” for the next few months. Since my next appointment would have been the day after Memorial Day, he has decided that I don’t need to come down there to see him. He requested that my primary doctor do a CBC (complete blood count) here locally and fax the results to them. I don’t know if they will go ahead now and ask my primary doctor to order a free light chain test at the end of May or if I will have to wait until my June appointment to know anything further.

My next appointment on June 24 will be at the end of 6 complete cycles of treatment. On that day I will have another bone marrow biopsy (ugh….) and then see the doctor afterward. I don’t know how long it will take for the pathology report to be completed, so am not sure when I will be scheduled to return. When those results are available, he will plan the next phase of my treatment. The upside of this is that it looks like I might be off treatment for several weeks and that will coincide with Jen’s wedding.

In the past, bone marrow biopsies were the only way to clearly know the extent of the cancer load of my type of myeloma (non-secretory myeloma); so, I feel fortunate that it has been a full year since my last bone marrow biopsy. The development of the free light chain blood test in recent years has provided a less invasive way to track the cancer on a more regular basis. However, my doctor explained, they need to know what’s going on in the bone marrow as they can only tell so much from the blood tests.

The good news is that I am beginning to experience a little improvement in the neuropathy in my feet.

Thank you for your continued prayers

Final lab results for April

2008-04-08T06:37:00.000-07:00

Received my call from my nurse at Stanford Monday evening regarding my final lab results for April. It seems my kappa light chains have increased a little this month instead of continuing to go down. This is the specific part of my bone marrow where my cancer is causing abnormal function. Briefly, kappa and lambda light chains are the building blocks for your immune system and they have to maintain a certain ratio in order to function normally. She assured me it is not a cause for concern as they sometimes see this happen and that the ratio has improved significantly since they first saw me in October.

It’s hard not to be discouraged, but I know I am slowly improving as my red and white blood counts are coming up.

I started another cycle of treatment on Saturday and go forward in faith for God’s provision.

Stanford Report for April

2008-04-02T10:36:00.000-07:00

Although my monthly appointment at Stanford was on April 1, it was no “April Fools” to see the lab reports that show my blood counts are continuing their slow but steady climb back up toward a normal level. Even without the evidence of the lab results, I know that my energy level slowly increases each week and is an indicator that things are improving. What we can’t assess without lab results are the cancer levels; but as the blood counts improve it is an indication that the cancer levels are dropping and allowing normal blood cells to be produced. We won’t have the results of the cancer portion of the labs until Friday afternoon.

This is my week off cancer treatment and during this week I receive my monthly gamma globulin infusion. These will continue to be necessary until the cancer is under control and my immune system recovers sufficiently to manage on its own.

My sleep pattern continues to be affected by the high-dose steroids (Dexamethasone) I take on the weekends, so I typically don’t get much sleep for several nights, even with the aid of sleeping pills. Sleep will be even more of a challenge this weekend with the small additional dose of steroids required for my infusion on Friday. However, my weeks are beginning to have somewhat of a known routine. Tuesday is usually my worst day as my body adjusts back to normal after the steroids. I’m typically very tired and shaky, and this continues into Wednesday as it tapers off. Thursday, Friday and Saturday are typically good days, but by Saturday night the challenge of sleep is on again.

The neuropathy continues to slowly spread in my feet each month and is now beginning to affect my fingers. It seems that I easily drop things now and I’m trying to determine if it is the loss of sensitivity or the shakiness that contributes to this. I’ve also noticed that my hands and arms easily “fall asleep”, but so far they quickly recover with movement. But I try to ignore these inconveniences as much as possible and just keep going. Fortunately, I am still able to play the piano, which I have enjoyed adding back in to my life now that I have more energy.

In the midst of this ongoing trial are many happy days enjoying my family, the preparations for Jen’s upcoming wedding and especially my beautiful grandson, Ty, who is now 4 1/2 months old. Oh, I just happen to have a photo of Ty at 3 months. He still has some of his beautiful dark hair under his hat, although a lot of it has thinned out. Don't you just want to hug him?!

Although there is not as much to report on a weekly basis as in the beginning, I will continue to keep you informed of my progress. Until the Lord’s complete healing is evident, this will be my life – ongoing treatment. We feel so blessed to have so many who continue to hold us in their hearts and prayers for the long haul.

Stanford Report for March

2008-03-12T08:18:00.000-07:00

We had encouraging news at our Stanford appointment last week. My blood counts are starting to show slight improvement and there has been a very small progression down in my cancer numbers. We are so encouraged that there is finally progress in the right directions even though it is small at this point. I have been feeling like I have more energy lately and am pleased it is confirmed by the lab results.

Last week was my week off treatment and I always feel a bit more energetic when I’m not dealing with the fatigue generated by my cancer drug. Saturday began another round of treatment and, hopefully, the next set of tests in April will show an even greater improvement.

Friday was my monthly gamma globulin infusion. It was a very busy day at the infusion center and I was there longer than usual. The additional small dose of steroids required with my infusion always creates an additional night I struggle to sleep once a month and a bit more of a struggle with my weight. Not only do the steroids cause you to gain weight they also increase your appetite, which further contributes to weight gain. It takes a lot of diligence the rest of the week to drop those extra pounds before I start all over again.

Rejoice with us over this small victory in my treatment, but keep those prayers a comin’! Your active participation in our trial through your prayers continues to bring comfort that we are not alone.

2008-02-24T08:21:00.000-08:00

I’m halfway through another cycle of treatment and am doing quite well. If I want to sleep on the days I take my steroids, I have to take sleeping pills for a couple of nights. Also, I have noticed that even though I take the steroids after I have eaten a meal, they are beginning to cause a little heartburn, but it is easily remedied with antacids. For a couple of days after the steroids I am quite “shaky” then I have several days that I feel “normal”. I haven’t decided if I’m actually beginning to gain some strength and stamina or if I’ve just learned to adjust my daily pace to what I can handle. My next appointment at Stanford is March 4.

Jen & I just returned from spending 5 days in Portland doing wedding shopping. We were blessed with beautiful weather all week until we drove the last 120 miles through the Siskiyou Mountains, which provided us with snow showers, heavy rain and hail before we descended back into the sunshine. We stayed with my brother and sister-in-law, Chuck and Louann. Louann was our chauffeur as we traveled all around the Portland area with our list of items. What a blessing she was with her knowledge of stores that would have what we were looking for and we valued her ideas and help. It was a successful trip even though Jen felt overwhelmed at times with so many decisions that had to be made so quickly, and of course, it was the last afternoon that everything finally fell into place and we hurried back to particular stores to make our purchases.

That’s about all to report for now as things are going along fairly smoothly with my treatment at this time. Thanks for your interest in my progress during treatment. We value your friendship, love, and prayers.

Stanford Report for February

2008-02-10T10:27:00.000-08:00

Saw my hematologist at Stanford on Tuesday, February 5. My blood counts are holding steady for my red and white blood cells, platelets and cancer. We now know a dosage of my cancer drug that I can take and maintain my blood counts so my treatment can remain consistent. We did not expect to see any change in the cancer levels until after 3 cycles of treatment. We were just happy those numbers weren't worse after the long break in treatment over the holidays due to my low counts with my white blood cells. I have tolerated this dosage well and have not been so fatigued all the time. It has been nice to feel I can add a little more activity into my life.

Since I do have a little more energy, I have been trying to begin a very simple exercise program to begin building a little muscle back on my body after being so sedentary for many months. A "charlie horse" in my calf last week after two days of exercise caused concern that it might be a little blood clot since that is a possible side effect of my cancer drug. As a precaution my aspirin dosage was increased for several days with periods of elevating my legs throughout the day and warm, moist compresses on the affected area - and lots of prayer. After 24 hours of treament all of the symptoms were gone. The doctor carefully examined the location of concern at my appointment on Tuesday and leaned toward a diagnosis of a muscle issue. Adding a little more activity and exercise into my daily routine will be a further aid in avoiding this possible side effect. I am grateful that I have not been affected by any other side effects for which this drug is known, except for the mild neuropathy in my feet. Since it does cause "drowiness", I take it at night and it helps me sleep. By mid-morning, I'm usually feeling pretty good and ready to tackle what awaits me for that day.

I am in progress on my third cycle of treatment now and finally feel like I am moving forward. I was pleased that the doctor would allow me to add three of my supplements back into my daily routine. I do take a lot of pills these days, but all of the extra supplements have made a difference in how I feel.

We spent a couple days following my Stanford appointment exploring the coast between Half Moon Bay and Santa Cruz. We also enjoyed dinner at the home of our new friends, Nora and Tony. Nora is my "myeloma" friend. We have the same doctor and, so far, our appointments have fallen on the same day. We continue to email and encourage one another and always enjoy connecting at the clinic each month and sharing lunch or dinner together. They do have the advantage of living just 20 minutes from Stanford!

On Thursday afternoon, we picked up Jesse and Lyn at the San Francisco airport when they returned from their month-long trip of doing more work on their film project in Rwanda and a fun 10 days in Scotland for a little R & R. Their two destinations made for quite a contrast in weather, and packing was quite a feat with all the equipment they had to take and clothes for two completely different seasons. But they did well and had a great time!

Thank you for your faithfullness in continuing to stand with us through my battle with cancer. Your love, support and especially your prayers sustain us day to day!

Round 2 - Week 3

2008-01-27T14:23:00.000-08:00

This week has gone pretty well. The sensations in my feet have subsided and the neuropathy does not seem to be spreading as much. It seems to come and go in its severity. In addition to my other vitamins and mineral supplements, I am taking high doses of vitamins B-2 and B-6 which seem to have helped. There is another supplement, L Glutamine, that I was taking while I was off treatment that helped also. I will have to get the doctor's permission to take it during treatment, but I am hoping he will agree to it. I am taking literature regarding this supplement that his nurse sent me from an article in an oncology nursing magazine and other articles written by the oncologist who developed this supplement.

I was a good girl and took my sleeping pills last night so that I could sleep in spite of the steroids in my system. I'm very glad I did as I was rested enough to attend the first service at our church today. I love the worship music at our church and it was a good message and challenge today. I truly have a greater appreciaton for the loneliness "shut-ins" experience. Eventhough we listen to many sermons on the internet and have the opportunity to watch church services on TV, it's just not the same as being in your own church and fellowshipping with your friends.

Last Monday was another trip to Medford, Oregon, with Jen's soon to be sister-in-law and her Mom to shop further for Jen and for Jamee, who is getting married two weeks before Jen and Jeff. Shari, their mom, is trying to prepare herself for losing her two oldest kids at the same time! They will both be moving out of the area. I remember what a change it was when 2 kids left for college at the same time and Jeremy soon after to be married and move out of state. We have enjoyed watching our kids grow and mature and take on the challenges of working in foreign countries and/or marriage. We are enjoying the fact that everyone is living in the area at the moment and know that could change at any time.

Jen and I are hoping to make a trip to Portland in the next few weeks to do wedding shopping and enlist the talents and creative ideas of my sister-in-law, Louann. We are ready to go whenever there is suitable weather to make the trip. Jen will be my capable driver as we forge the snowy mountains and I'll be able to get ample rest in between our shopping forays at my brother's comfortable home.

Steve will stay behind this time as he is on call for jury duty. He's hoping he'll get dismissed as he will have to take me to Stanford the following week for my appointment. He is anxious to get going on our home maintenance projects, and now that the insurance adjuster has been here to assess our storm damage, he is anxious to get going on more clean up. We were very blessed that the insurance company was more generous in their settlement than we anticipated.

Thanks for your prayers regarding finances with our medical expenses. It seems they have spilled over to our homeowner's insurance, too, for which we are most grateful. He has miraculously provided and we anticipate it will continue.

The Lord has really blessed me with contact from friends and family this week. It always lifts my spirits and a positive attitude is important when you're in this kind of battle.

We continue to pray for God's healing touch and everytime we go to Stanford we anticipate a miraculous report of normal numbers on my blood work! We pray God is blessing you in many ways as you reach out to us through your prayers.

Round 2, Week 2

2008-01-19T16:36:00.001-08:00

Round 2 – Week 2

Today begins the second week of treatment of round 2. I am feeling quite well, except for the neuropathy. It is continuing to spread and progress in severity. I am beginning to experience some pain and other sensations, such as burning, tingling and sharp shooting pains. I will get a break from the weekly blood tests. My next appointment at Stanford is February 5 at which time all of the necessary blood tests will be done to monitor my progress during this second round of treatment.

Steve has improved rapidly this week and it has been difficult to keep him from doing too much. He will need a follow-up x-ray in the next few weeks.

Wedding plans are progressing smoothly and we’re happy that so many things are in place already.

Prayer focus for this week: 1) Please pray regarding the spreading neuropathy in my body; 2) that wedding plans will continue to go smoothly and that there will be clear direction for the decisions that need to be made yet.

There are still days when the reality of my situation hits us like a ton of bricks. Our spirits are uplifted by your encouragement and prayers. Thank you for the time you invest in our lives.

A quick update

2008-01-14T18:41:00.000-08:00

We received confirmation today that our group health insurance will cover 70% of the cost of my cancer drug. Our specialized cancer policy will make up the rest of the cost. We are so grateful that this huge expense will be covered from now on! Thanks for your prayers concerning this issue. We can all praise Him for His provision.

Steve caught the same bug the rest of us have had only his went right into pneumonia. Please remember him in your prayers this week, too.

Treatment - Round 2

2008-01-12T17:00:00.000-08:00

Well, I didn’t make it through last weekend without a trip to the urgent care clinic. By last Saturday, I was running a pretty good fever and had to see a doctor. They put me on a high-dose, strong antibiotic for 10 days, and I am happy to report that I bounced back quickly. Thanks for your prayers! Being able to get my gamma globulin infusion last Monday was a big boost to my immune system, too. Thursday was more blood work to check my counts and on Friday, I saw my primary care doctor who determined I was sufficiently recovered from my bronchitis to begin treatment again.

My white blood count is back to an acceptable level, so today begins Round 2 at my attempts for treatment. Today is a “Dex” day so I have a bit more energy. My dose of Revlimid has been reduced to 15 mg per day to hopefully prevent any further neuropathy and to prevent such a big drop in my white blood count. It is important that treatment gets going and stays consistent.

We knew that the cost of the Revlimid was determined by the dosage amount and were excited to think my drugs weren’t going to cost as much. However, the price of the drug has gone up since the first of the year, and this prescription is only $30.00 less than the prescription was for 25 mg. Can’t imagine what it would have cost if we were continuing at the 25 mg dosage!

We were able to get a little different coverage from our health insurance provider that went into effect on January 1. With the hope that they would cover my Revlimid, we applied for better pharmacy coverage and accepted a much higher deductible on our medical. In the mail today were two letters from the same person at our insurance company, both written and mailed on the same day. One letter is a denial for covering my cancer drugs and the other is an approval! When we talk about the “right hand not knowing what the left is doing”, we’re usually referring to different people or departments. However, this seems to be applicable to one person in this case!! My journey continues to be plagued by roadblocks, for which we have to trust the Lord for His wisdom and guidance in all things. Monday will be an interesting day as we try to resolve this issue, especially since we’ll be traveling to Medford, Oregon, on Monday to shop for dresses for Jen and her bridesmaids. Life must go on, you know, and there’s a wedding to plan!

Prayer focus for this week: 1) For God’s healing work to continue in my body; 2) that the health insurance company will confirm their approval letter for my cancer drugs is correct; 3) that I will continue to recover from my bronchitis and stay healthy following my recovery.

It brings us great comfort to know there are so many who love and care for us, and are covering us with their prayers! Thank you so much for your cards and letters through the holidays.

Blowin' in the wind

2008-01-05T08:16:00.000-08:00

This time of year the weather is always the topic of newscasts and conversations. We are no exception here. We are currently in a lull between storms. The one that roared through here Thursday night did a lot of damage. Winds were clocked at 86 mph at the airport (about 12 miles north of us), but a man in Anderson with a weather station said our winds were 122 mph! And I believe him. The wind roared all night Thursday night as the rain beat against the house, the floors shook on the 2nd and 3rd story, and the shingles from our roof filled the yard and surrounding pasture. We’re very grateful there were no leaks as we had re-roofed the house years ago and put the new roof over the old one. Something blew through our yard from somewhere and damaged our garage door; and, our gazebo and hot tub are kapoot! We’re grateful that our power was restored after 5 hours; but we had prepared for a long outage when we heard the weather warnings. It was so quiet last night and very conducive for a good night’s sleep. We’re currently waiting for the next onslaught, which may bring snow to our area. The skiing will be good as soon as the roads open and avalanche warnings are lifted.

My labs this week show my blood counts are continuing to slowly rise and by the end of next week I could begin my treatment again. However, I’ve been fighting a bad cold this week and was hopeful my gamma globulin infusions, scheduled for yesterday (Friday), would give me the boost I needed to get over it. However, a national shortage of this blood product caused my appointment to be canceled. I’m continuing to get a little worse each day even though I am resting and taking lots of vitamins and supplements. The infusion center has located what they need for me at another one of their centers and I will be able to get my infusion on Monday. Please pray for me! This could be a critical situation for me – the concern is always pneumonia with my type of cancer.

Wedding Bells!

2008-01-05T08:10:00.000-08:00

Jen and Jeff announced their engagement on New Year’s Eve, so there will be a wedding this summer! Modern technology (phone, fax and internet) has certainly made it easier to “shop” from home and keep our trips to town at a minimum for me right now. Jeff begins training at the California Highway Patrol Academy in Sacramento on Monday, so the kids have been busy trying to put as many things in place as they can before he leaves. He’ll be home most weekends, but will probably have homework, so we want to keep wedding stuff at a minimum for him. It’s fun watching their creative ideas begin to take shape as they strive to make their wedding day unique and a reflection of who they are. Please pray for them during this time of preparation.

Happy New Year!

2007-12-30T13:53:00.000-08:00

When we celebrate the birth of Jesus at Christmas, I’m always reminded that birth brings a new life and new beginning. A week later comes the New Year, also a time of new beginnings. Tradition makes us think of what our resolutions should be as the New Year begins. We think of things we want to change or improve; and, most often, we are starting over on resolutions of things that we’ve tried to change or improve previously. In spite of my best efforts at resolutions, I’m always reminded that, generally, my efforts are futile without the help and strength my faith in God provides.

On a lighter note, most of our resolutions are based on the activities of the previous 6 weeks that begin with Thanksgiving and end with New Year’s; what I like to call the “eating season”! Born out of this is the most common resolution made by all – to lose weight and exercise more, and eat healthier foods in the coming year.

We had a very enjoyable Christmas and have certainly “eaten our way” through the holidays! I felt very blessed to have the energy I needed to enjoy having our family here on Christmas Eve and Christmas Day, and to be able to do a lot of the cooking and preparation, with the help of my daughters. One of my best memories is snoozing in the rocker/recliner after Christmas dinner with my grandson, Ty, asleep on my shoulder.

This week’s lab reports showed some improvement in my blood counts – back to where they were two weeks ago, but still not adequate to begin treatment again. There is slight improvement in my feet. The numbness seems to have lessened and tends to come and go in its severity. I think this is a good sign that the nerves are trying to recover. I have been in touch with my nurse at Stanford each week and my oncologist will return next Thursday, the day of my next blood test. My nurse is hopeful I will be ready to begin treatment again at that time; however, my dosage will be lowered. Once the decision is made to move forward again with treatment, it will take almost a week to receive my next prescription and actually get started again. At that point my treatment will have been suspended for 4 weeks.

Although it has been frustrating to have my treatment suspended so quickly, I am grateful for the opportunity it gave me to have more energy and be able to really enjoy the holidays.

We continue to trust the Lord for healing and health, and with the roadblocks that continue to plague my attempts at treatment. We continue to praise Him that I have remained healthy in spite of the low blood counts that have left me very susceptible to illness and infection.

An Angel named Audrey

2007-12-29T20:09:00.000-08:00

We were all busy making preparations Christmas Eve for our evening gathering with our family. We had a timeline and a goal. We were still wrapping packages, preparing food, arranging tables, etc., and we needed to leave the house by 4:30 to arrive in time for the 5:00 Christmas Eve service. Shortly before lunch, I heard a knock at the front door. It sounded just like Jeff’s knock (Jen’s boyfriend) and since we were expecting him to arrive anytime, I did what we always do when he knocks I yelled “Come in!” I then walked toward the front door to greet Jeff only to be surprised by a woman standing in the foyer. We stared at each other for a moment before recognition hit and we embraced each other in a big hug. It was a good friend of Johanna’s from her days in British Columbia, Canada, working on her MA. We hadn’t seen Audrey in several years and she hadn’t seen my gray hair.

Audrey had spent many an overnight in our home as she traveled back and forth for holidays and summers to her home in S. Cal. and we had all grown to love her. She now lives and works north of San Francisco, and is a licensed massage therapist on the side.

We were thrilled to find out there might be one more person around our table on Christmas Eve, only to learn that she had made the long drive for just few hours visit with us and had to return later that afternoon. After a brief visit with Johanna, we were told that she had come with her massage table and where could she set it up to give us all massages! Wow! Timelines and schedules went out the window! We did all make it to church on time, but all we really wanted to do after our massages was sit and relax! It was wonderful! What a gift!

When we arrived home from church, everyone chipped in and we got our meal on the table in good time even though the prep hadn’t been completed before we left.

Bless you, Audrey, for using your talents to bless us!

Merry Christmas......HO, HO, HO

2007-12-23T10:58:00.000-08:00

I am determined to enjoy Christmas with my family in spite of the fact that my blood counts were even lower this week instead of showing improvement. My nurse at Stanford was very surprised at the results and indicated she has never seen a situation such as this. My oncologist is out of town for the holidays, but my nurse was going to send him an email regarding my situation. The neuropathy in my feet has improved slightly, but is not completely gone. So, not only do I have a rare type of my particular kind of cancer, I am now experiencing unusual responses to treatment. But, God is still in control and I figure it just provides Him with an even greater opportunity to show His mighty Hand.

The immediate concern with such a low white blood count is to maintain my health. Even the common cold would be a danger to me right now. The immediate miracle is that my energy level is much improved from last summer and I’ve been able to do a bit more; but, I have to be careful not to push myself too much and tax my system, setting it up for illness. The ongoing miracle is that I have stayed healthy to this point even though others have been ill around me. The admonition to “Wash your hands!” that began in early childhood and still rings true today, has played an important role in my ability to stay healthy. Purell, a hand-sanitizing product, is my constant companion. So if I meet you somewhere and shake your hand, don’t be offended when I immediately take out my Purell and “wash” my hands!

Christmas preparations are nearly completed. Jen and her boyfriend, Jeff, went to the mountains several weeks ago and cut trees for both families. Within a few days, they had it up and decorated and some decorations throughout the house as well. The best decoration this year, however, will be our beautiful grandson, Ty.

I’m looking forward to Christmas this year with the same excitement that I remember experiencing as a child, even though the weeks prior have been unusual for me – no choir concert with my students and not being able to attend many other Christmas programs that are a part of our normal routine. My excitement is generated by the time our family will have together. Now that Johanna has returned from Indonesia, the entire family will be here to celebrate together for the first time in several years. My grandson, Ty, will not lack for arms to hold him and people to love him, but I will make sure I get equal time! The one thing I look forward to the most is that we will all be together in church on Christmas Eve. Since we all attend different churches, this is my one request at Christmas – that we all attend the same Christmas Eve service. We rotate among our various churches through the years, and this year we will attend First Nazarene Church where Jesse and Lyn are worship leaders for one of their 3 Sunday morning services.

The Christmas story from Luke 2 will be read numerous times in churches and homes over the next few days as people are reminded of the true origin of our holiday and celebration during this season. We don’t really know when Jesus was born. His actual birth date has not been recorded anywhere. There is much speculation from Biblical scholars that He was born earlier in the fall. However, the important thing is that we do celebrate His birth and remember this momentous occasion when God physically crossed from the realm of heaven to earth. In Luke 2:14, the angel of the Lord and the heavenly host praise God and say: “Glory to God in the highest, and on earth, peace, goodwill toward men!” We all long for peace and good will, but how many of us truly acknowledge or declare the Glory of God in our personal lives? Everyone loves a sweet little baby, but that sweet little baby becomes a challenge when he begins to walk and talk. Jesus was crucified for His “walk” and His “talk”. Yet, He is called the Prince of Peace. All we have to do is look around us and look around the world and we know there is no peace. His Christmas gift to us is the inner peace that His salvation brings and the promise of eternal life with Him and our Heavenly Father.

Wishing you a Christmas a filled with His inner peace.

We Now Pause For........

2007-12-14T08:11:00.000-08:00

My visit to the doctor in Stanford turned into a fun social event which helped soften the blow that treatment has had to be suspended for now, due to the numbness in my feet and a WBC (white blood count) that is too low. Weekly blood tests will now commence, watching for the numbers to improve, and a bit more isolated life to avoid exposure to illness. When treatment resumes, my dosage will most likely be lowered in order to prevent further neuropathy and low WBC.

The WBC is actually the total number of all the different types of white blood cells, each having a particular responsibility in maintaining our health and fighting disease and infection. The one that is the primary concern during cancer treatment are the “neutrophils” and mine are too low to continue treatment until they recover and the number returns to an acceptable level. (For an explanation of neutrophils: http://www.wisegeek.com/what-are-neutrophils.htm)

The numbness on the bottom of my feet is baffling to them. They’ve never heard of a neuropathy situation presenting itself in such a manner in response to my particular drug.
Other than a few little prickles a couple of times that were very brief during the first week of treatment, I do not have nor did I have, the usual symptoms of pain and/or tingling, prickly sensations. They just went numb. So, while we wait for my blood counts to improve, we are all hopeful that my feet will recover. If not, then I get to add another doctor to my long list, a neurologist, along with the decision of whether we see someone locally or someone at Stanford. Even though it is a long drive, for something unusual like this, I think I would prefer a doctor at Stanford. I seem to be very good at “unusual” stuff and now have quite a long list of specialists!

Since the drive to Stanford is usually 4 – 5 hours depending on the traffic, we decided to drive down the day before my appointment and spend the night. On Wednesday evening, we had dinner with my cousin Norman Ebersole and his wife, Phyllis, who live about 35 minutes from Stanford, depending on the traffic. We had dinner at a great restaurant next to our not so great motel. We had such a good time visiting over a leisurely dinner.

When Steve & I attended the Myeloma Symposium in November (see post: “One Step Closer”), we met a couple at our table. Nora was also newly diagnosed with Myeloma. The 4 of us visited for a little while after the meeting. Nora and I exchanged email addresses and have been corresponding ever since, sharing what we have learned about our cancer, our experiences with the journey toward diagnosis, and difficulties with insurance companies and treatment options. Of course, we have also learned a lot about each other as individuals and our families. Steve & I felt it was very providential that we had connected in November. Providentially, Nora was scheduled for labs and a bone marrow biopsy at about the same time as my labs and doctor’s appointment on Thursday. The 4 of us connected at the Lab and had opportunities to visit while going back and forth for our visits and procedures. We then enjoyed a nice lunch together at a nearby restaurant before Steve and I headed for home.

At my appointment on Thursday, I got to meet the nurse who I have worked with over the phone these past weeks. She is very efficient, friendly and knowledgeable, and I really like her. She even gave me a hug when she first came in the room and met me! My oncologist, Dr. Coutre, was not in the clinic on Thursday and so I saw his associate (for about 5 minutes!). But, my nurse, Stacey, was in touch with Dr. Coutre by phone so he was actually making the decisions. His associate just had to give me the quick once over to assess my physical condition.

My next appointment at Stanford will not be scheduled until treatment resumes. During this time of waiting, I’m going to get back on my herbal supplement regimen. In looking back, I think they contributed to my improved WBC in October when I first visited Stanford. Stacey, my Stanford nurse, has encouraged me to take multi-vitamins and minerals. They acknowledge that herbal supplements can have powerful effects on the body, but because they do not know what the interaction and effects might be with the herbals and the chemo drugs, they request they not be used during the first few cycles of treatment. After that, they are okay with one being added at a time. I have, however, continued with eating a very healthy diet that is organic as much as possible, and making fresh juices.

Thanks for your prayers last week. We had a safe and uneventful trip, and I had the energy to help drive. My platelet count (the cells that clot your blood when you have an injury) was my concern last week and those numbers were fine. Our claim for reimbursement for my drugs for last month is being processed, but we still haven’t received anything. We’re anxiously watching the mail everyday!

Thank you for your continued prayers for complete healing! Until that is evident, prayer focus for this week: 1) that I will be able to stay healthy in spite of my low counts; 2) that the numbness in my feet will clear up and not return; 3) continue to pray regarding our reimbursement for my drugs; 4) that all the arrangements for getting my weekly lab work done here will go smoothly; 5) that the Lord’s presence will be evident in our lives as we meet and encounter new people.

Dex Day

2007-12-07T19:25:00.000-08:00

Today begins week 4 of treatment. I will have 7 days off my cancer drug, Revlimid, but will continue to take the once a week dose of my steroids, Dexamethasone. So today was a Dex only day.

Today was also my once a month infusion of immunoglobulin, which restores some of the immune system my cancer has destroyed. It won’t completely protect me from illness, but it will especially help protect my lungs from pneumonia. Normally, I would have 4 mg of Dex infused through my IV just prior to my treatment. That was not necessary today as I already had 40 mg on board. It was interesting, however, being tethered to an IV for 6 hours today when I would normally be doing something much more active with the energy it gives me! My daughter, Jen, spent a couple of hours with me this morning and we chatted away like magpies (or was I the magpie on steroids?!) After going for these infusions for over a year now, everyone at the infusion center knows me well and they each stop for a chat sometime during the day. I always bring lots of things to do to keep me busy, but I usually have so many little visits that I don’t accomplish much. It does make the time go by quickly, however, and I do enjoy my new friends.

I’m feeling much better this week since I’ve been on antibiotics for the sinus infection, and am pleased with how well things have gone for me during this first cycle of treatment. I hope I can maintain good health once I finish taking the antibiotic. The numbness in my feet has continued to come and go and move from place to place. Hopefully, it will clear up during my week off.

On Wednesday I had to re-order my drugs for next month. You can only get a one month supply at a time and each month I have to answer the same questions and listen to the same instructions before the order will be filled. Also, the doctor has to complete a survey and write a new prescription each month. When I called, I let them know that I never received a receipt for my credit card purchase for the prior month and all of my voice mails and emails had been unanswered. The pharmacy tech connected me directly with a billing rep and she faxed a receipt to me. She also gave me her number and extension and the name and extension number of the person handling my account. So this piece of the puzzle will go smoother from now on I hope. I found it quite interesting that over the next 24 hours I received 2 more faxed copies of the bill from different people at different billing locations, an email, a phone call, and a copy by snail mail! Guess I finally was able to rattle a cage! So, this is a praise for answered prayer!

Now that we have the official receipt we have submitted it to our insurance company who handles our specialized cancer policy. This is a defined benefits plan and pays only certain things, some of those items are things our regular health insurance doesn’t cover and some of those items are paid in addition to our regular health insurance.

We will make the long trip to Stanford this week, as I will see the doctor on Thursday. My oncologist is out of town, but his associate will see me. I’m looking forward to meeting her and meeting the nurse coordinator who I have been working with over the phone for the past month.

Prayer focus for this week: 1) the numbness in my feet to clear up; 2) that our cancer policy insurance company will interpret the cancer treatment reimbursement in such a way that the benefit would pay 80% of my meds; 3) safe travel for our trip to Stanford; 4) for a good report on my labs.

Each of you is so special to us! We so appreciate your prayerful focus each week and for standing with us through this trial.

Week 2

2007-11-30T20:41:00.000-08:00

Blessed sleep was mine last Friday, steroid day, with the aid of some sleeping medication. I slept fine the following night without it, so now know that I only need to take it one night a week.

I have experienced quite a bit of “shakiness” this week. However, I have a sinus infection that has probably contributed to this. I am now on antibiotics and am able to continue my treatment at the same time. All of my medications are very drying and the humidity is very low here, so this has most likely contributed to the sinus problem. We hope the purchase and use of some humidifiers in the bedrooms will benefit all of us.

My PMD (primary care doctor) ordered some blood work for me this week. She covered all the necessary tests for a CBC (complete blood count) to track my WBC (white blood cells), RBC (red blood cells) and platelets after 2 weeks on my treatment, and also to satisfy follow-up reports for upcoming appointments with the Rheumatologist and Cardiologist. We killed 3 birds with one stone, so to speak. When compared to my last CBC on October 8, my RBC is holding steady and my WBC has gone down again, but not as low as it has been. The concern is my platelets. Although they have dropped dramatically, they are still just above normal range.

Today begins week 3. It’s steroid day again – the day I have the energy to do a little housework or some shopping, not to mention the 18-inch thick file of medical bills, insurance forms, general information about my cancer and treatment, and contact information of various care providers and pharmacies that needs weekly attention.

In addition to continued prayer for God’s healing touch, please pray specifically this week for: 1) my platelet count, that it won’t drop below normal before I have my week off of my cancer drug and the numbers can recover; 2) that my body will respond quickly to the antibiotics and my head will clear.

Thank you for your partnership with us through your prayerful support.

Week 1

2007-11-23T18:15:00.001-08:00

It has now been one week since I began treatment. As predicted, I didn’t sleep much the first two nights due to the steroids. I didn’t really experience any other side effects; just felt like I had a little more energy. I now have a prescription for some sleeping medication to counter act the effects of the steroids. I’ll only need to take this medication for 1-2 nights; then I should be okay on my own again the rest of the week. I’ve tolerated the first week fairly well. Fatigue is my constant battle, but it isn’t any worse than before treatment began. There have been some times of dizziness, but not often. The most noticeable side effect at this point is the muscle aches, which are mild. There have been “prickly” sensations in my feet during the night at times, within hours of taking my medication that indicate nerve involvement. Neuropathy is a side effect that will be closely monitored and my dosage will be adjusted if it becomes an issue.

I’m a great believer in drinking lots of water and that has served me well. Fluids are extremely important with my therapy and I can definitely tell a difference in how I feel in relation to the amount of fluids I’ve consumed.

Today begins week 2.

Thanksgiving

2007-11-22T07:59:00.000-08:00

I love Thanksgiving! It’s a holiday that’s all about leisurely enjoying a meal around a table with family and friends. No gifts required; no special clothes to be purchased. It’s all about preparing special foods and time together and, of course, being thankful.

I remember many happy times growing up and enjoying family meals at my Grandpa and Grandma Ebersole’s. I used to go help Grandma set the tables– there were usually 40-50! Happy times and good food! Over the years, I gleaned much wisdom from my Grandma. But, I remember well her simple advice upon my marriage – “Cook lots of good meals and always have a smile.”

In spite of my battle with cancer and the unknown road ahead, I have much to be thankful for this year.

I’m thankful for my husband, children and new grandson who are all such a blessing.

I’m thankful for new “friends”:

Ajay, Bruce, Carolyn, Gisela, Heidi, Jack, Jane, Jeff, Jennifer, Pam, Randy, Stacey, Steven, Timothy – Their names all end in MD or RN or some other professional medical designation!

Most of all, I’m thankful for the ministry of the Body of Christ through the power of the Holy Spirit. I have truly experienced the mysterious power that is released through your prayers. Though you are not actually in my presence, it’s a miraculous thing to physically feel the love, support, hope and encouragement that your prayers produce in our lives. When I reflect on what Steve and I were experiencing back in June during those first dark days of diagnosis and were facing everything alone, I am amazed at how far we’ve come since then.

There was a quote on my refrigerator for years that is now gone. I remember it well, but not the person whose words they were (remembering names is becoming increasingly more difficult “at my age”!):

Prayer doesn’t prepare us for the greater work; it is the greater work.

Thank you for being a part of the greater work in our lives!

Happy “American” Thanksgiving! To our international friends, we remember you with thanksgiving today as well.

Welcome to our World!

2007-11-18T17:32:00.000-08:00

Ty Nielsen Rosten made his grand appearance at 2:40 pm this afternoon, November 18, 2007, his mom’s birthday!

Vital statistics:

weight 7 lbs. 12 oz; length 20 ½”

Proud Parents: Holly & Jeremy Rosten
Even Prouder Grandparents: Kati & Steve Rosten

GO!

2007-11-16T18:22:00.000-08:00

My morning started out with my specialized eye exam that showed a “fluid vacuole” in my right eye, which has caused a little larger than normal blind spot. My ophthalmologist suspects that it will resolve on it’s own once the cancer is dealt with and my body is healthy again. Another good report!

As secondary problems continue to arise in my body due to the cancer, I am relieved to finally be at the starting point of my treatment.

Jen had a big breakfast waiting for me when I returned home and then I washed down the 10 little pills that comprise my steroid dose. I felt well prepared and confident as I popped those first few pills that signified the beginning of my physical battle with the cancer. My prayerful battle continues to grow and become more confident as well. After pausing to absorb the momentous occasion and preparing for what might lie ahead, I found myself asleep on the couch within two hours! Now don’t get excited! I know that I’m not going to stay that fortunate. It’s evening now and I’m starting to feel “antsy”. I will take my cancer drug this evening as it generally causes “drowsiness and dizziness”. We’re hopeful that the effects of one drug will offset the other; although I am prepared for an “all-nighter”! I do have sleeping pills, if needed, but want to go through this first week without them to see how my body will respond to the two drugs.

Those who know me well know that I have always had an interest in the medical field. My curiosity has served me well as I have traveled this road of medical issues for myself. However, I am amazed at all the twists and turns that this cancer road has taken me as issues secondary to my particular type of cancer have developed. Two things I’m watching for the Lord to reveal: 1) how He is going to use this trial in my life to enable me to minister to others; 2) when He will release me to return to my beloved choirs and the students whose love and prayers are so precious to me.

Thank you for your notes today, and earlier this week that always bless me. I will try to respond to as many of your notes as possible, but if I don’t manage to get to everyone, please know how much I appreciate hearing from you!

Set!

2007-11-15T23:13:00.000-08:00

Everything is in place for me to begin treatment tomorrow. I had hoped our grandbaby would have arrived before I began, but maybe he wants to be born on his mom’s birthday on Sunday.

Talked to the cardiologist’s office today and my stress test was normal. That’s a good report.

My eye exam told me what I already knew – that I need a little change in my prescription. I am returning first thing Friday morning for one additional test to see why the vision in my right eye has become quite a bit worse than my left. I’ll probably hear the familiar phrase I hear often lately, “At your age……”!

Ready?

2007-11-14T11:34:00.000-08:00

My drugs finally arrived today! I wish treatment was finishing just before the holidays instead of just beginning. However, I’m just glad to finally get going with treatment. I feel like the last several months have been kind of a “honeymoon” from facing the realities of my disease; although, there were constant reminders due to my limited stamina and energy levels. Now it’s time to go to “work” and deal with the realities of the disease and treatment with its side effects. Please pray for these to be minimal.

Some encouraging news regarding payment of my drugs: About 6 –7 years ago we purchased a supplemental benefits policy that provided coverage for cancer. It fills in some of the gaps that our regular health policy doesn’t cover, such as co-pays for procedures, transportation costs for treatment that is over 50 miles from home, and some additional coverage for treatment. We were able to confirm this last week that they now cover Revlimid! However, the amount of their reimbursement is open to interpretation, so we don’t know how much it will be. It could be anywhere from $250.00 - $5,250.00. Please pray that they will interpret the policy for the $5,250.00 amount!

Today, I’ve already made 3-4 phone calls trying to track down the receipt for my drugs. Nothing was included in my package. I paid for them over the phone with my credit card and now I need to send the receipt for some reimbursement, which we hoped to receive before we had to purchase the next months supply. One person told me it would take two weeks to arrive, but did give me the number for the billing office to confirm. I’ve left messages and emailed, so we’ll see what happens. I’ve learned over the past several months that everything seems to take lots more time than you think it should.

My nuclear stress test on Monday was quite difficult. I thought I was going to collapse before it was over and have not felt well since. I’m anxious to hear from the cardiologist for reassurance before I begin treatment. I am very anemic due to the cancer and strenuous exercise creates the need for more oxygen than my body can easily provide.

Yesterday, I went ahead and got my flu shot. After a lot of research and discussing the options with a number of people, it was determined that I needed to take every precaution to stay healthy as serious illness in the middle of treatment could potentially be life threatening for me. I really haven’t felt much in the way of side effects as I have in the past. I still just feel like I did after the stress test on Monday.

Did you know that with a mitral valve leak you can’t have your teeth cleaned or have any other dental procedure done, without taking antibiotics before the procedure? Fortunately, I was aware of this. Unfortunately, my cardiologist never said anything about this. Fortunately, I have a standing order for antibiotics, so I was able to take the required medication before my appointment yesterday. My hygienist told me they have a great deal of difficulty getting the local cardiologists to remember to tell their patients about this, as the dentist will not proceed without the required medication on board. She also gave me the name of some tooth care products that will help protect my teeth from the drying effects of my cancer drugs.

That’s your medical update for today from my little corner of the world. Thanks for reaching into my little corner with your messages of love, support, hope and encouragement!

The Domino Effect

2007-11-10T12:55:00.000-08:00

I’ve spent a great deal of time on the phone the last few days. Several of my appointments had to be changed for various reasons and then there would be conflict with other appointments that then had to be changed. Add to that, all the phone calls regarding my medication. We’re hopeful that my medication will be here next week. We’ve been able to find it for around $7,000 a month, the original cost we were quoted by Stanford.

Saw the cardiologist on Friday. I have a small leak in my mitral valve, no other damage was seen at this time. She’s glad to have a base line analysis of the condition so it can be monitored. I will go Monday for a Nuclear stress test to determine if there is any heart disease present. Tuesday I get a flu shot and see the dentist. Wednesday I will be at home dealing with the effects of the flu shot. Even when I was healthy I would run a low-grade fever and feel “fluish” for a couple of days. Thursday is my final physical therapy appointment at which time he will give me a home exercise program to continue using. Thursday afternoon I will get my eyes checked. I think that just about does it. I think I've had every body part and organ examined over the past 6 months! I guess you could call this my 100,000 mile check up!! If all goes well, I hope to begin treatment on Friday or Saturday. At last!!

Steve will have oral surgery on Friday. Most of you know that two of his front teeth were broken off at the gum line when he had surgery for a nasal polyp last December. He has spent the past year enduring the process of having implants to replace them. He is now ready to have the gums opened and a “plug” placed in there to prepare for actually getting his new teeth. Hopefully, he will have his new teeth by Christmas.

Thank you for your continued prayer support! Please pray this week that my medication will actually arrive, that my treatment will progress without experiencing any adverse side effects and for Steve’s oral surgery on Friday.