I'm on my 33rd day in this room. It really seems to me that it was easier to handle the pains of the early days, the mucositis and all the other stuff, than the ongoing upset stomach and blah feelings of these later days.
This afternoon, as I dragged myself the three feet from the bathroom to the sink to wash my hands, and then the five feet from the sink to my bed, I collapsed in the bed, feeling like I barely had enough energy to breathe.
I had wonderful news in the morning. I know to pray. I know to count my many blessings. I know to press through because it matters to my wife, my kids, and so many other people. I know to stay grateful. I know to remember that people have been through much worse than I've gone through.
None of that made it into my emotions. They hit rock bottom, and I hit the nurse call button.
The nurse came in. "Can I please talk to Esta or whichever nurse practitioner is on call?" I asked.
"Sure," she said. "Is it urgent, or should I tell them it can wait if it needs to."
"It's not urgent," I told her.
Two minutes later, Liz, one of the more brash and loud of the nurse practitioners, came in, asking how she could help.
"I'm out of energy,"I told her. "I think I just need one of you to tell me I'm not dying."
She got down on her knees, took my left hand in both her hands, and she said, "You are doing great. It's remarkable you made it this far doing so well. We can help you."
Then she added, "If you need to talk to us, it's urgent. Don't ever tell the nurse it's not urgent again."
I just started crying. It was terribly embarrassing.
Esta joined her about two minutes after that. I told them I was just worn out from constant stomach upset, no energy, and not being able to find my normal upbeat attitude.
They told me that I had a bad case of "hospitalitis," (I've been in this room 33 days) and that it was also time for them to move faster on taking care of my stomach problems. They sat around and encouraged me, and they told me they were going to give me some anti-depressants to take care of the constant blah feeling.
They told me that most of the team is sure that my gut problems are graft-versus-host, but they'll step up the treatment for it, though they had to get the doctor's approval.
A few minutes later, I got a pill that is a mood-pick-me-upper. I was ready to give in and let my mood be helped by an anti-depressant.
Liz had asked me if I'd ever taken that particular pill, and I told her that before my leukemia I never took anything for anything. She said, "Then you just rely on my choices, and we'll make adjustments if need be."
Since I was laying on my bed crying in the presence of two nurses, I didn't fight that at all.
The pill helped, I think. My wife's been around all day, and we've had great conversation. Esta showed back up towards the end of the day to tell me the plans for my gut problems.
They can't just assume my stomach issues are GVH. Apparently there's a virus called CMV that most of us have in our bloodstream. Since I got cord blood, I didn't get any CMV from the babies, but back when I was searching for a donor, I tested positive for CMV (as does about 70% of the US population). My CMV level is at 680 or something right now, which makes it possible that the problem is not GVH, but the virus.
So they're upping my antiviral medication, then tomorrow they're going to scope my stomach and intestines, take a couple biopsies, determine exactly what the problem is, and begin treating it.
Until then, I'm on the greatest weight loss plan there ever was. I look like Gandhi, all bald and skinny. They told me, however, that if my stomach feels better not eating, then don't eat.
One fortunate thing is that I know that Jerry went through something similar. Then the doctor showed up one day, and he promised Jerry a miracle pill that would make him feel better within two days. That miracle pill is a mild steroid, and if the problem is Graft-vs-Host, then the steroid will return my appetite to normal almost miraculously in a day or two.
We won't know, however, until the biopsy results come back, which won't be until Thursday ... or maybe even Friday.
Anyway, I thought I'd let you know that my strength ran out, and my hospital team came running to the rescue, offering everything they could.
I have to imagine that people who don't have the immense support system I have run out of steam a lot faster than I ran out of steam. But for those of you getting ready to do this after me (Tamara, Richard, among others) don't feel bad if suddenly you hit the wall and there's nothing there. Everyone's knocked down more by one thing than another, and I guess "rotgut" and the blahs are what did it for me, and I've had wonderful people around me for days.
I've had a lot of other times in my life where I've been spiritually at a point like I was at physically today. Every time, God didn't suddenly give me strength. He let me collapse, and I found a team around me to hold me up, and I learned all the more that God is for me and that there are a lot of people who love me.
Thank you to all of you and your prayers.
I have a prayer request for you. Tamara's blog, "Our Journey," is in my blog roll, and it's usually near the top because she posts more regularly than most people on my blog roll. (Newest posts go to the top.) She's heading toward chemo and transplant soon. Please pray for her. She already has people praying for her, but what she's going to do is not easy. Nor is what her husband is going to do, being the care partner, easy, either.
Then there's Richard, a friend I made through email, who is going through his bone marrow transplant in South Africa. He will begin Total Body Irradiation on March 4th, and his transplant is March 14th. Please pray for him as well.
Richard has a great team of doctors that has been getting advice from all over the world. He's gone through multiple rounds of chemotherapy, but his BPDCN (see tab above) has never gone completely into remission. He's always had a bit of the bad cells in his bone marrow.
Nonetheless, it's been driven down so low, they feel safe giving him the transplant and depending on the new immune system to take care of what's left. (And, just for my peace of mind, I searched the PubMed database, and transplant has worked effectively even when complete remission has never been achieved.)
Please pray for him, and his care partner, Nichola, just as you have for me and for Jerry.
I think it's great we get to share all these prayer requests. I'm on the prayer lists at Jerry's home church in Grundy, VA and on his brother Dump's home church, too. I feel like I have friends there, and I have promised them that when I'm well—thanks to their prayers—I'm showing up there to tell them thank you and to meet all those wonderful people.
What a great adventure God lets us live! It's all good, even when I fall apart and can't handle it.