April 26, 2007

Today is day+84. It’s hard to believe that day +100 is just around the corner. It seems so long, so very long ago that I started my love affair with chicken. I have been feeling pretty well off and on. I’m supposed to “be active”, which means do very limited projects or exercise, but not too much. I went out into the garage and just bending over and grabbing stuff to throw away was enough to cause me to rest again for a couple of days. I understand better the delayed effect of exercise and am getting a better handle on how much I should do.

As I mentioned in my last update, I saw my doctor, Michael Mauro, last week. We had a great discussion about what to expect, progress, where I’ll be when. By the end of the conversation I sensed that Dr Mauro was ahead of me with a carrot just out of reach and I was the mule following the carrot.

Dr Mauro basically said, “Art we brought you out of a very, very bad place with great success. We then found a donor and performed a stem cell transplant. We knew that there would be GvHD issues because of the donor we chose. We didn’t tell you about the surety of GvHD because you were facing enough trauma facing the transplant. You are coming through the GvHD splendidly. The next hurdle is the bone marrow biopsy. From your blood counts I’m confident we are going to find good results. We need to get you off the steroids before you will get any stronger.

By the way, the +100 day mark is not anything magical. You will probably be right where you are now. Your life may not ever be as you hope it will be. There is the possibility that the leukemia will return within the first year. We expect to see a small amount of negative PRC for the first few weeks/months. Then we want to see the PRC turn from negative to positive during the first year. All indications say the leukemia has been severely eradicated and you’ve got a great start on beating the disease. You need to do your part now, which is do some exercise and don’t overdo it. And you need to quit expecting to know what’s next. What happens next is what will happen next. (In other words, be happy I’m alive because there was a much higher chance I should be dead right now and I should be content I’m alive.)

Of course being the kidder I am, I thanked him for the info then I immediately asked him when he thought I would be strong enough to go play some golf. He gave me the look!!!

All kidding aside, I’ve been meditating on all God has done me and how I’ve been blessed through this process so far. Dr. Mauro reminded me how spoiled, controlling, and impatient I really am.

Psalm 33:20
We wait in hope for the LORD;
he is our help and our shield.


Isaiah 30:18
Yet the LORD longs to be gracious to you;
he rises to show you compassion.
For the LORD is a God of justice.
Blessed are all who wait for him!


Lamentations 3:25
The LORD is good to those whose hope is in him,
to the one who seeks him;


I love you guys. Thanks for your prayers.

April 18, 2007

Today is day+76. Barbara and I went to the beach for a couple of days. We went to Seaside and I was able to walk the promenade. We also went to the outlet mall and walked some more. I am pretty jazzed that I could walk so much and I’m not suffering because of it today.

We went into the clinic today and found out that I am being transferred from the BMT (bone marrow transplant) team and back to my doctor at OHSU. This means that I’m out of the acute stage of the healing process and going into the chronic (long term) part. I will get lab work done once a week but only see the doctor every 2-3 weeks.

I finally feel like I’ve turned the corner and am gaining some stamina. My white cell, red cell, platelet, and neutrophil counts are much better. They are still not perfect, but getting better. My chemistries, such as potassium, magnesium, electrolytes, liver function, etc. are doing great too. One of the best things is that my protein level actually is improving. They are doing a special albumin test which is a better indicator of where my protein reserve level really is.

The thing that will make the most improvement now is for me to get off the prednisone. It is still tearing down my major muscles. Also, even though my ANC (absolute neutrophil count) is high enough to be out in crowds, like church, the prednisone suppresses my immune system so I can’t be in crowd yet. A couple of weeks ago my prednisone level was raised as a precaution against GvHD because my stomach was acting up. They are slowly lowering it each week. I can’t wait till its zero.

Within a couple of weeks I’ll have my first bone marrow biopsy since the transplant. The biopsy will give the best indication of what’s going on with the transplant. It is also going to tell us if there is any indication of leukemia left in the marrow. I’m of course a little anxious because of the possibility of finding some leukemia.

Thank you all for your support and prayers.

April 10, 2007

It is day+67 and there isn’t a whole lot of change to report. I’m still pretty weak and sit around most of the day. On one hand I feel pretty lazy and unmotivated. On the other hand it is very frustrating not to have any more energy. I really physically over did it again last week and I am still feeling the effects. When I overdo it by expending too much energy, it takes several days to overcome the tiredness.

It was very hard for Barbara and I to not go to an Easter service. We stayed home and read scripture, as we do most days. We have heard that the service was a great one and are anticipating getting it from the internet.

For a while I was putting on some weight. However over the past week I’ve lost a few pounds again. My stomach has been feeling a little “puny” and we are treating for a minor GvHD flare up. We should see a difference in a few days, if the diagnosis is correct. It appears to me that I’m fighting the effects of a minor bout with GvHD. Losing weight can be caused by a more limited inability to absorb nutrients and proteins because of GvHD.

I’ve finally begun growing some hair back. Basically I am only getting a mustache and beard again. There is no hair growing on my head (or anywhere else) yet, but I anticipate it will be starting to come back pretty soon.

I have been released to go to a friend’s home, as long as there haven’t been any sick people there. Also, there shouldn’t be a lot of people in close proximity. I can also go to a clean restaurant (no taco trucks or buffets). I’m still not eating beef, dairy or other hard to digest foods. Sometimes I feel like I’m going to grow feathers from all of the chicken I’m eating.

I wish there was more to report. But I’m afraid this amount of progress is the way it’s going to be for quite a while.