The news that at last Gene’s bone marrow shows no signs of Leukemia could not have come at a better time. It is the reason he is, we all are, enduring this struggle and so we now know it has been worth it. I know he is savoring the news. He said yesterday, “We are not out of the woods yet. As far as turning the corner on the pain, we are not there, but I think I can see the bend in the road ahead.”
I have, as Gene of course has, completely lost track of time, except I do know that it is the end of May and I am amazed. The month of May has been a trial, to say the least. Thank you to all of you who’ve sent messages of hope and encouragement, I just haven’t been able to reply yet.
Gene is recovering from his most recent round of kidney failure, the numbers are trending in the right direction and that is huge. After an abdominal ultrasound Friday (I think) it was determined that he is now suffering from pancreatitis, an extremely painful inflammation of the pancreas, related to having “sludge” in his gall bladder (but not stones). He has not been able to eat or drink without it causing even more gastric and bowel distress. They originally gave him darvocet for the pain. They were worried about how loopy he’d been for so long on the morphine, unable to tell if that was a result of the damaged kidneys or from the morphine, or both. The darvocet only provided a few hours of relief and yesterday they put him back on the morphine. I now recognize Gene’s version of classic morphine behavior: deliriums (some of which provide the only humor in this situation), scratching and extreme restlessness. Gene can’t sleep on morphine, it’s weird, it stimulates him. A strange, strange drug, but it did provide the needed pain relief, relaxed the furrow in his brow.
The biopsy and associated chromosomal analysis also, incredibly, allowed the doctors to see that the tacrolimus, the drug given him for anti-rejection and anti-graft-versus-host-disease (the next big hurdle lurking on the horizon) did cause the kidney failure and perhaps the pancreatitis as well, so they know that they will not try it again, and will find another tool. Right now he is on prednisone (steroid) for that purpose but they say it is a short-term solution.
The second round of 20+ pounds of water weight has been coming off over the last few days and as good as it is to see that he has bones again, frightening to see that that seems to be all that is there. He basically hasn’t eaten in over a month. They’ve replaced his IV with a PICC line, this time in his right arm, most inconvenient but small in the scheme of things, so he is receiving fluids. As of last night even water was painful to drink.
When I spoke with Jim this morning he said that Gene reports feeling better and asked for tea and muffin, so that could be a huge turning point, we hope. He is still on 24-hour watch. I stayed one night (decided it was the second worst night of my life in terms of what Gene endured and I had supported him through, but it was also the night he most needed me, so that was fortunate), but mostly he just wants the hospital sitter from midnight to seven. Our hope is that he can progress to not needing 24 hour watch, get off the pain meds, start to eat, start to walk again…..and then we are on the path to home.
I’m taking the afternoon off to try to get some rest, maybe sun, maybe walk….definitely short on fresh air. We all talk about how the air in the room, though supposedly filtered, feels not right. Saturday we put Gene in the wheelchair and got the ok to wheel him outdoors for about 15 minutes. The sun was gone, marine layer in, but he said it felt good, but it wiped him out and he fell asleep immediately when we got back.
This weekend though, after I sent out that last plea for prayers and energy, I did feel a peace coming through. Friday I felt so desperate, but over the weekend I began to feel that we would survive. Although there was at that point no real change in Gene’s condition, just a slow movement of the numbers in the right direction, I think it was the power of prayer, the extra energy sent by all, so thank you. We are feeling the love, the concern, the care.
My team of angels continues to hold me aloft, even when I’m draggin’, they have been a miracle unto themselves. Gratitude also, knows no bounds.
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