06:45 - 12:00. Arrived at the VA where I underwent a procedure to have my PICC line replaced with hickman catheter in order to prepare for extracorporeal photopheresis (ECP) treatment. I will still be maxed out on immunosuppressants; this does not replace the steroid treatment.
This morning's visit was met with further doom and gloom. The nurses and doctors continue to treat me with pity and see no improvement in my skin GVHD.
12:00 - 16:30. Visited the Seattle Cancer Care Alliance (SCCA) where they will begin ECP treatment this Thursday. The personnel here deal more with "failed" or refractory cases such as myself (the term "failed" refers to the failure of my GVHD to respond to steroid treatment) and are much more optimistic. They seem hopeful that if the GVHD does not spread to other organs, ECP has a good chance of being successful. Nevertheless, it will take time--possibly several months--and I must remain on immunosuppressants. Thus, I will continue in this state for some time.
16:30-18:00. Stopped back at the hotel, grabbed a 30 minute nap, and am currently back at the VA until 21:30 for my evening appointment where I will receive more IV immunosuppressants.
It is very easy to lose sight of the end at this point. My days are long; I am in constant pain; and aside from the personnel at the SCCA, there is very little hope in this process. Yet this too will pass, one way or another. I am thankful for my faith in Christ, which allows me to maintain an eternal focus and a hope in this life and the next. Without that, I doubt that I'd have come this far, and I know that I would not want to go further.
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