My train ride.

A little over six weeks ago I was admitted to the hospital at Duke to begin my autologus bone marrow transplant.  And what a six weeks it has been.  At the time of my admission, I was feeling as good as I had felt in quite a while.  It had been about two months since I complete my clinical trail, which involved 24 chemotherapy treatments over a six month period.  The collective effect of that much chemo had worn me down, and while I had avoided most of the normal chemo side effects, I was generally fatigued most of the time.  But during my two month hiatus, I had regained some strength and was feeling pretty good.

A while back I read a comment somewhere that seems very fitting: First they hit me with a bus, and then as I was starting to get back up, they hit me with a train.  During that six days in the hospital I received 14 chemo infusions, or what they refer to as High Dose Chemo.  The actual six days in the hospital were not really all that bad.  It was the next two weeks, living in an apartment near Duke, that things really hit bottom, and all those chemo drugs began to have their full effects.  It was as if that train was two weeks long.

As was the case during the clinical trial, I was again blessed by being able to avoid most of the side effects of the chemotherapy treatments: nausea and vomiting, diarrhea, pain, loss of appetite and weight, etc.  My two main problems were extreme fatigue, and mucositis, or mouth sores.  There was also probably a brief encounter with chemo brain, also known as chemo fog, but I'm not sure if that is correct or not :-).  For a period of a few weeks, just getting up, and getting from the bed to the breakfast table was a major undertaking.  Then I had to get dressed and make my daily trip to the BMT clinic for blood tests and reassessment.  Holly would drop me off at the front entrance to the clinic, where I would check in at the front desk, and then sit down to rest.  Getting from the car to the check in was all I could handle.  After my rest, I would walk probably 50 yards to the treatment area, get weighed in and assigned a nurses' area, only to be exhausted again and ready to sit back down.

I believe that it is only now, when I am beginning to feel better and stronger, that I can look back and see how bad I really was.  My main focus back then was just getting through each hour.  After we moved into the apartment, I was told that it was important to get some exercise each day, whether I felt like it or not.  So each day we would do one lap around the parking lot, probably about 200 yards.  For the first week I had to stop and rest twice during that one lap.  Gradually I worked up to no rest stops, and then to two laps.  I am now walking about one mile each day.

It is difficult to describe, but as I look back now, I can see much more clearly that I was really at the bottom of the well.  As Robin Roberts said recently, they were really terrible, hard, yucky days.  And I am so very glad that they are now behind me.  I have come so very far since then, and am getting better each day.  I get blood workups done locally each week to see how my various counts and measures are progressing.  And I am glad to report that they are all showing improvement each and every week.  Most of my counts are back up into the "normal" ranges, and the rest are not far behind.  However, there is one very important attribute that cannot be measured, and that is my immune system.  It was totally destroyed by the High Dose Chemo and is now in the process of being rebuilt.  But it cannot be measured on a 10 point scale, and it takes many months to return to full functionality.  For that reason I must be careful to avoid situations that might expose me to germs, viruses, infections, etc.

In about another week and a half we will return to Duke for my first followup visit since the transplant.  This will involve another PET/CT scan, along with some other tests, and a meeting with Dr. Horwitz to review and discuss my situation.  I look forward to finding out what is next on the agenda.  Between the clinical trial, and then the transplant, I have definitely come through the worst part, but I am by no means at the end of my journey.  This train will stop at many more stations before it reaches it's destination, but at least now I am riding on the train, rather than being hit by it.

LymphomaInfo Social