update Mon. 2/2/09

It's been a while since I blogged, so I thought I'd update you all on the past week. I had a regular appt. scheduled for this past Friday down at Dartmouth, but due to continued skin problems, we called on Monday, and were told to come in on Thursday for some tests and consult visits with ENT and dermatology specialists, as well as an oral and skin biopsies. All of these things were in an effort to identify whether the continued skin issues - which had begun to resolve themselves and then, about a week ago, began to come back again - are the result of a drug reaction or if I have somehow gotten a case of chronic graft-vs-host disease (cGVHD).
Several of the symptoms I was having seemed to fit best (some of them really only) with cGVHD, but the 1st of the 2 biopsies to come back (the oral one) was inconclusive, and the dermatology folks felt strongly that it was a drug reaction, as did the ENT doc, though not as strongly.

So, they decided to treat me as if this is a drug reaction for the time being, and plan to see me again Tue. afternoon, when they should have the results of my skin biopsy. Between Fri. and Tue., they have put me on both oral steroid pills and a steroid skin crème, which has to be applied after having cool compresses applied to my whole body for 15 mins. Or so 2-3 times a day. In the weather we're having, it's something like torture! My skin has already improved A LOT, and I have felt some increase in my stamina and energy level over the weekend. At the visit tomorrow, they will reevaluate me, look at the progress, talk about the result of the skin biopsy and make a plan as to what to do next.
There is discussion about starting me on a blood treatment called ECP, or photopheresis, where my blood is removed from one arm, pheresed (or spun and separated) for the T-cells (immune cells), which are then run under UV light, aqnd then all of the blood, including the UV treated T-cells, are put back into my bloodstream via the other arm. This would have to be done twice a week for aqt least a month, and then once a week for at least another month, and then less often after that. The big problem is that it does not appear there is a photopheresis unit anywhere in Maine as of yet, though I heard today there is actually one coming to Brunswick later this year, perhaps as early as summer.


For the time being, you can pray for the following:
1) that the current diagnosis of a drug reaction is correct.

2) that the drug changes and topical treatments would have had enough effect between now and Tuesday that I can "continue course" with this treatment plan. Pray that the recommendation tomorrow is NOT to begin ECP treatments, as that would require us to pack up house and home AGAIN and move bqck to Claremont with Lisa's folks for at least a month or two.

3) Wisdom and discernment for the team working on my case

4) Continued patience and endurance for myself and Lisa as we deal with the "fall-out" of all of the treatments

5) That I would have a good attitude in the midst of this, and would not give up hope of healing and a return to some semblance of normal

It looks as if I will need to remain here through at least the end of next week at this point. I will update you all after the appointment on Tue., especially if we are able to come home sooner (which would be great, but we're not expecting it right now!). Thanks again for checking in and keeping us in prayer.