The Comfort of the Cross

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

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

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

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

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

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

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

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

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

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!

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!

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"

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

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

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!

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?

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......

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!

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

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

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

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

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

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

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!

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

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!

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

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!

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.....

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

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

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?

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

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

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

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.

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.