Iron Lungs

Well, one of the those major side-effects seems to have caught up to me, if only just enough to slow me down. I had a lung function test last week (PFT) that showed my lung function at 60% of normal, a 10% decrease from my test before transplant. Everything about my cancer and treatment is damaging to the lungs. The tumor itself is still taking up area in my chest in the form of scar tissue. Many Chemotherapies, including two agents that I had large doses of, have ill effects on the pulmonary system causing the lungs to scar or thicken, inhibiting flow or gas exchange to the blood. Radiation therapy to the chest also causes irritation and scarring. With all these things in mind, it is not all that surprising that I should have some function problems, but is something that the doctors have waited for with some inevitability . Because my numbers dropped on last weeks test into dangerous levels I went for a CT scan of the chest to see what was going on. This was somewhat of a fortuitous occurrence because if gave the doctors a chance to look at my diseased nodes and to assess the progress of my clot, something that was not scheduled to happen until my three month check-up in July.

At this point, the CT shows no signs of Hodgkin's disease, all my nodes being patten and normal. It's too early to say that the transplant has been successful, as only a CT combined with a PET scan can really show if there is an disease active on a metabolic level. That aside, it is definitely a positive sign! It is a little bit of a struggle not to get too excited about this finding , though, verifying that a year straight of therapies had finally rid me of this thing! I have to remind myself that my transplant is still relatively virgin (+54 today) and transplant failures are most common inside 12 months. This is made clear by the recent experiences of two friends I met in support groups that have relapsed with in six months of finishing transplant. They both offered me a lot of support throughout my transplant and it was largely by their example that I was able to pick myself up and continue to move in the early stages of all this. It is difficult to fathom what they must being going through, knowing that all this horror has not yielded any result and knowing that the treatments left to them no longer offer cure or disease free life. They have changed from pillars support for me to specters of my deepest nightmares. This changes makes me feel guilty, I care for them both and wish them the best- their situation cuts to the very core of my thoughts on mortality, or should I say the questions I want to leave unanswered for the time being. My all clear of cancer, all be it premature, also makes me feel guilty. There seems to be no rhyme or reason as to who survives and who gets entered into the negative stats column. The Wicked are not punished and the Virtuous are definitely not rewarded. God may not play with dice, but I would dare anyone to show me the design behind the fate of my friends- God or Chaos, it seems at this point to be a mute matter of semantics. I choose not to celebrate this part of the scan on knowing that this might all be fleeting and that not no magical turn of steps can lead me to a disease free life

I wait and hope.

My clot, on the other hand, is improving quickly and better than the doctors had hope. I will continue on blood thinners for another four to five months but should recover just fine from that episode, minus the four pieces of hardware in my chest, which if nothing else may prove to serve as good cocktail party conversation(?)

While my lung function is diminished, the rate of gas diffusion or the rate at which gases exchange to the blood is still excellent (111% of normal). This is generally considered the first marker of chemotherapy related damage, so it is good that at least these numbers are normal. My CT showed some scarring around my tumor site, probably caused by radiation, and some inflammation on the edge of my lungs, which is probably chemo related. Base on a repeat of the PFT I did today, my lungs are stable so the doctors are okay with waiting and seeing if increased activity and time will improve my breathing unassisted. If not, I'll be put on a steroid treatment involving the drug predinsone, a drug which everyone that has taken can remember- not very much fun. Luckily for my musical life, the bassoon appears to be a low air capacity instrument. The general resistance of the reed seems to dictate that not much air is actually used in playing, meaning I don't see too much ill effect from this in my playing. (Good thing I don't play the flute, right Hilary?) The road bike is a totally different story, being only able to sustain about 20 minutes of moderate riding before I get terribly winded.

Other than that, things continue to march on. If you are coming through the Denver area, I can see visitors, so drop me a line and come by. I am looking forward to the later half of the summer when a lot of restrictions will lift and I'll be able to travel amongst the living sans my cool blue mask!