Closer to the earth

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

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

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

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

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?

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

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

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

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

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!

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

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

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

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

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!