Day +5, April 29, 2010

Gene’s Update: Day +5, April 29, 2010

They told us it would be a rough ride, and it is. Gene said this morning that he doesn’t think he’s ever felt this badly in his life. Another person familiar with Bone Marrow Transplant told me these would be the worst two weeks of his life.

He finally agreed to take painkillers. For awhile he was saying it was just a bad ache, but today they offered and I reminded him that data says that one heals faster when one is not in great pain. So he took a vicodin this afternoon and is napping now. The condition making his life kind of miserable is called mucositis, basically an inflammation, all the way to ulceration, throughout his entire digestive tract, stem to stern. Think one giant canker sore all the way down. He is still eating some food, which the doctor told me yesterday was a bit unusual, I guess by now they might have expected him to be on intravenous feeding. He was taken off the IV tacrolimus, the anti-rejection drug that he’ll be on for at least 100 days, and switched to oral dose. If they can maintain his dosing without bothering his stomach too much, that frees him up to walk and shower without being hooked up, neither of which he’s wanted to do much of because of pain, but he has forced himself to walk for 15 minutes each day, but it has not been easy. And this is projected to continue for about nine more days.

All of this has less to do with the actual transplant of cells and is really the reaction to the superchemo, which he is now exactly one week out from. One of the nurses told me that some of the chemo drugs, if they were to get on bare skin, would actually burn your skin. Hmmmm……

No real change in his numbers yet. Those poor little baby stem cells are trying to set up house in a very stressed environment. But I don’t think they expect any change there for a few weeks anyway.

So he is having a rough go of it, to say the least. And I’m realizing, now that I’m spending daytime as well as evening hours, how incredibly uncomfortable the chairs in this room are. I’m trying a variety of pillow arrangements but still….poor Gene sat in this chair for 10 weeks. Now he is mostly in bed, and I’m sure that is way low on the comfort factor as well.

He’s covered in his prayer quilt, and napping. We’ve got the healing harp music playing. Lawren McDonnell sent us a book of Hafiz (a Sufi poet from the 14^th century) poetry, The Gift, and I’ve been reading love poems aloud to him. A gauge of how lousy he is feeling is that he hasn’t even had his Kindle out in days, after consuming books daily for months. So, all I can do is be here, even providing nutrition is not working so well at this point. We’ve been through lots of options, and I end up eating most of them. So I am eating! Gene’s leftovers! Patty Dana has been here for a week already, and Jim just got in the car yesterday and drove in from ABQ, arrived this morning. My sister Esther’s comes in about two weeks, though we’ve not figured out the exact date yet. Up until Saturday, transplant day, I couldn’t think more than a few hours ahead. As difficult as this all is, especially seeing Gene so sick, I just have to keep focusing on how lucky we are. We are so lucky that we found a donor so quickly, we are so lucky to have made it this far, and we are so lucky that Gene has this opportunity to prolong his life. We are so lucky for our incredible support network out there…..so many of you have made offers of love and assistance that we haven’t even been able to accept yet. And we are so lucky to have insurance. The number would have completely wiped us out and then some, if we even could have gone forward. And I am so lucky to be able to be on leave now, which allows me to be with Gene as much as possible. His care team continues to be outstanding. And when I catch a glimpse of some of the other people on this floor, I realize, it could be worse. So love and gratitude are keeping me going, which includes of course, the excellent care from our friends and family. Sadness and worry peek out from behind the curtain still, but not as much as before transplant.

I feel confident, I have faith, that Gene will come through this difficult trial, and will move on to the long-term recovery. The reading I’ve been doing, and the psychologist I’ve been seeing who specializes in cancer and caregiving, both tell me that the future challenges include the psycho-social aspects of post-transplant life. Whatever the “new normal” turns out to be, it will never be the same life we enjoyed. For now, it is still day-to-day. The urge to make plans has to be pushed aside as we try to learn to truly embrace, “one day at a time”. Which is all we ever really had, or have, but the illusion that you can own and plan for chunks of time in the future was greater before all of this.

Chilly (60) and windy, but sunny in SD today. The light coming in the ocean view window is peaceful and warm, the sunset now far to the north, almost out of the window’s range, compared to when we arrived in January. I probably don’t need to say that it is not a great time for visitors; he just feels so awful and has such limited energy. But as that changes, I’ll update, and look forward to that time. Until then, please continue to keep us in your prayers, keep the candles burning, keep sending good vibes Gene’s way. Thanks for all your time and concern, and love, and hanging in there with us.