January 30, 2007

I am half way through the radiation treatment now. No skin has fallen off and I don’t smell BBQ so I guess things are going pretty well. We are at day -2 and Thursday is still planned for Day 0 when the stem cells should be arriving.

Yesterday I battled nausea with medications and slept most of the day. Today they have cut the meds in half and I am feeling much better. Barbara and I even walked half way across the OHSU sky bridge took a seat and enjoyed the view before we walked back to my room.

Just wanted to let you know that I am still with you all and doing better than most – what ever that is! ! !

So thank you again for your prayers and I will let you know in a couple of days how I am doing.

Through Barbara’s nimble fingers, Art

January 28, 2007

Well it’s day -4. I have finished my two rounds of chemo and I’m glad that’s all there is. Tomorrow I start my Total Body Irradiation (TBI), which will last two times a day for the next four days. On Thursday February 1 shortly after my eighth TBI I will receive my new stem cells which could be between 10:00 p.m. and 1:00 a.m.

I am not feeling too badly. In fact I was on the treadmill and walk ½ mile at 4degree incline. Pretty good huh? I was feeling real proud of myself until the nurse told me that I wouldn’t feel the majority of the chemo effects until next week. Oh well I will enjoy every minute I can.

I feel like the Apostle Paul because although these are my words, Barbara is my scribe at this time. Either Barbara or I will keep sending you brief and frequent updates as this process progresses.

We still appreciate your prayers, Art and Barbara

January 24, 2007

I just heard from OHSU and I will be admitted at 10:00AM on Friday to have a central line put in my chest. They will also remove the picc line from my arm. From there I will be admitted into oncology where the games begin. I don’t know when the chemotherapy will start, but it will be either that afternoon or the next morning. I’ll keep you posted on what happens.

Here* is a great article from Scientific American that explains why the discovery of Gleevec is so important. Stem Cells are being more closely monitored and believed to be the source for all types of cancers. Once a stem cell mutates, it can reproduce itself with the mutation and even become a malignant tumor. Don’t feel like you have to read the article. There will be no test.

*Note: Please try again tomorrow if the article is unavailable. Just FYI, each download uses about 2% of the total available daily bandwidth.

January 22, 2007

Well this was to be the day I was to be admitted to OHSU to start my conditioning for the transplant. However, due to some logistics and donor size, I will be going in this Friday, January 26th, instead of today. However, the scheduled transplant date is only 1+ days later than previously scheduled.

The donor is a smaller female so my larger than normal size will require two consecutive days of collection of stem cells from her, instead of one day. Also, she is European and lives in an area where there are no departing flights available except in the mornings. Instead of shipping the product (product is the official name of collected stem cells in a bag) immediately after collection, the product will be couriered out on the first flight the next morning.

Those schedule changes for the donor have caused changes in my preparation regime. Typically I would have had 4 days of TBI (total body irradiation) before having 2 days of Cyclophosphamide chemotherapy. After the chemotherapy I would have “rested” one day to allow the chemotherapy levels in my body to drop so that the new stem cells would not be damaged by the chemotherapy drug. TBI must be done on 4 consecutive week days and is not done on weekends.

If I were administered this regime, then the timing of my European donor would have required me to “rest” for 3 days before the product arrived. Resting with no live cells is not the best. By delaying the start of my regime and reversing the regime I will receive 2 days of chemotherapy over the weekend first, followed directly by TBI, followed directly by the transplant. The “rest” time for chemotherapy will happen during TBI and no rest time is required after TBI before receiving the product.

I know this is a long explanation of why my admission date has been changed. By giving you more detail I am hoping that your disappointment is kept at a minimum. The delay is actually a blessing in that it cuts my hospital stay by 3 days while only delaying the transplant by one. Now I can be home to celebrate Barbara’s birthday this Thursday.

Thanks again for your prayers and support. We are getting there. I know it feels like one step forward and two steps back. However, I believe it is in God’s perfect timing. Although His timing is perfect; it requires that He is control, not us. I don’t always like that but it is best. ONLY GOD

January 17, 2007

I have some late breaking news. As I was getting my bone marrow biopsy today at OHSU, Noreen from the transplant coordination team came in with the news that Donor 2’s final report just came. This is the donor from the international registry and the best choice because she has had no children. All of her tests are complete and indicate that she is a great match for me (in a stem cell sort of way). Dr. Mauro wants to double check all of the test results, but I’m pretty sure that I will be admitted on Monday, Jan 22, 2007, to start my transplant preparation regime. Donor 2 is scheduled to be at the collection facility, which is near her, on January 30-31. I will receive her transplant cells within 24 hours of collection. I should be out of the hospital in 6-8 weeks and on my way to a long recovery.

Besides getting another bone marrow biopsy this afternoon, over the past 4 days I have received chest X-Rays, an EKG, pulmonary function tests, a MUGA (pictures of my heart with nuclear medicine in my blood stream) and a lot of blood work including an infectious disease exposure panel. These tests are used as bench marks to help monitor negative side effects of any GvHD, Graft versus Host Disease. I had all of these tests in December to prepare for donor 1. Because these tests have to be completed less than 30 day prior to transplant, it was necessary to repeat them all for Donor 2. I am really glad they are all done.

I am not looking forward to undergo harsh chemotherapy in conjunction with full body irradiation to destroy all of the leukemia stem cells in my marrow.

However, that is necessary to finally eliminate them. Should there any stem cells remaining after that, the donor stem cells will eradicate them. At least that is the plan. Of course, God must allow success of the plan or it won’t happen.

Again I thank you all for your prayers and support. It has been a long journey so far (241 days), but finally the time for transplant is here. With your prayers I am confident I can get through this time. On several occasions doctors and nurses have expressed amazement that I have done so well. I have been able to smile at them and explain that I serve a great God who is apparently not finished with me here yet. Some believe and others are suspect. However, they all have listened and considered that truth. It is my sincere hope that each of them and each of you are closer to God now than before.

January 10, 2007

I have recovered from the second round of chemotherapy pretty well. My counts are on the low side of normal. But they are good considering that Dasatinib suppresses the marrow while suppressing the leukemia. It has been 234 days since this all started in May so Barbara and I are ready to move on to the only medical cure to my leukemia, a stem cell transplant. Of course God can miraculously heal me if He so chooses. However, He has not chosen to do so yet.

I just heard today from OHSU that the second donor has been through her final medical tests and she is good to go. The third donor has supposedly gone through her medical tests also. However, she is in Europe and communication from the donor registry that represents her is slower than the National Donor Registry in the US. The plan is for the doctors at OHSU to screen the results of both active donors’ tests and choose the best one. I am scheduled to be admitted into OHSU on January 22nd for preparation for the transplant. This is the closest I’ve been to actually getting admitted for transplant. Again, Barbara and I are waiting to see if everything actually turns out this time.

Because sufficient time has elapsed since the first donor became ineligible, I am being scheduled next week to go through a lot of tests again. A stem transplant requires that many tests be done within a few days prior to transplant so that accurate benchmarks are established.

I have really missed being able to see you all. Hopefully, I will again be able to get out in public in a few months and catch up then. I am hopeful because I serve a great God who has continually blessed me more than I can imagine. I don’t want to plan anything outside of His will. My prayers are still that His will be done.

January 2, 2007

I hope you all have had a great holiday season. Christmas is a wonderful time to remember God’s gift and celebrate life with those who are closest to us. Since my Nadir (time of lowest blood counts after chemotherapy) was going to happen on December 25th, Barbara and I celebrated our Christmas a week earlier than most of you. We had a great time with family on December 16th and celebrated by ourselves on the 25th.

This is my first CML update of the new year. My chemotherapy from December 11-16 went better than expected. Side effects were minimal. My blood counts have been rising slowly since my Nadir. I only had 3 transfusions of platelets and no red blood transfusions before my counts were high enough to stop the need for transfusions. That was much better than the first chemotherapy.

Barbara and I are still under the assumption that I will be admitted for preparation for a stem cell transplant from donor #2 on January 15th and will have the transplant on January 22nd. The last time my OHSU doctor and I spoke about tentative dates was mid December. That is why I said “assumption” earlier. Barbara and I are preparing for January 15th, but are leery because of donor #1 becoming ineligible at the last moment. God has been in control of this process and if I am to have a transplant, it will happen in God’s timing. Barbara and I are both trusting that God is in control and that His timing and outcome are always the best.

On one hand I am truly thankful that I am still alive since I am one of the first people who have been in blast crisis to have the CML go into remission and not have any evidence of blast cells in my marrow. That is a miracle compared to the previous outcome which was imminent death. On the other hand it has been 226 days since this process started last May and I am no closer to getting rid of the CML than when we started. Barbara and I both have been anticipating going through the transplant process and it seems like such a long time to get to that point. Waiting has been hard and we are ready to get on to the 100 days of recovery that a transplant requires. As soon as I hear more about transplant timing I’ll let you know.

Although I want to get started on the transplant, I am also apprehensive to proceed. My greatest concern is graft versus host disease (GVHD) which is a byproduct of a transplant. There is no way for doctors to determine how severe GVHD will be between any donor and recipient. GVHD is something that only God is able to control. Although God has been incredible so far in the way He has protected me, I am nervous about what God is going to do regarding GVHD in my transplant.

As always, I covet your prayers. They are a great source of strength and comfort for Barbara and me.