First of all, no sooner do I compliment the biochemist behind Ambien than his child-drug lets me down. Night before last I got three hours, last night six but only after waking up for 15 minutes drenched in sweat. By the way, the red blood count is behind the wild swings in temperature (mostly freezing).
Not much to report, other than appetite is good, and I've been dutifully going to the infusion center every day to have more life-essence sucked out of me and be poked and prodded. Lately they've been taking stuff out of the arm AND the central line. ENOUGH ALREADY.
To pass the time, Jill and I went up to the seventh floor of the hospital where the high-dose chemo is given. If the infusion center is full of life (and it's not), the seventh floor was like walking into a morgue. The patients on the first floor, even if they are neutropenic and wearing a mask, have some trace of life among them. There is a TV on. People chat about their treatment. In the actual infusion room, the nurses laugh and chat with the patients and there is something approaching energy.
The seventh floor is old, dirty, depressing and filled with people that look like they are praying for death. Cadaverous, vacant eyes, people unable to lift themselves from their reclined chairs (each in their own room at least). Sorry to go HP Lovecraft of you folks but really, it's grim. It's a hospital. There's nothing "outpatient"-feeling about it. We ask how long the daily visits are. The nurses say anywhere from two to eight hours, depending on what needs to be done.
This is my near future. We see BB tomorrow and I expect he'll want me to begin four days of high-dose chemo, followed by the transplant, followed by god knows what to try to get my counts back to normal, all in the tomb on the seventh floor.
The only thing is...my back is killing me and I don't know if it's lingering affects of the surgery, now two weeks old, or if there is actually new damage. If the latter, I don't want to undergo anything that's going to make me neutropenic until after they've fixed me.
God I hope I'm ready for this. Your humble narrator signing off, me brothers.
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I was just shutting down for the night Nick, and then I read your post. I so wish I could say something very witty or hugely motivational, but all I can say is I will pray for you and Jill tonight and every night. . .
ReplyDelete"What lies behind us and what lies before us are tiny matters compared to what lies within us."
ReplyDelete-Ralph Waldo Emerson
Kick ass this week.
It doesn't feel like you're ever ready, really. You know there's no turning back once they finish the high dose chemo though. For me, it was just a 20 minute infusion of melphalan.
ReplyDeleteGood luck, buddy. Think about how Apatow and Mamet would write what you're experiencing.
ReplyDeleteNick,
ReplyDeleteWe know you have what it takes to get through this and you WILL! You and Jill are in our prayers always. Good luck and be kind to yourself. Much love!
Two summers ago when Jon went through transplant at the University of Colorado, it was (and still is) all inpatient. He had a very nice room and bathroom in a atmospherically sealed floor of the hospital. Each admission was about 17 days from start of Melphalan to recovery of counts and discharge. To pass the time, we played a lot of board games, watched DVDs and TV. In the middle of it, when counts were especially low, Jon slept a lot - which helped him pass the time. I wish we had a nickel for each time we paced the long halls on the transplant floor!
ReplyDeleteRemember, you are an individual case and your experience will be unique to you - maybe a whole lot better than those you see!!!
We are thinking about you and praying for you and Jill everyday!
Nick -- Your light is so bright that it can only bring new light and energy to the 7th Floor... Seven is the number of spirituality... let that light shine and we'll be praying that this is just a short phase for you before you can really feel a whole lot brighter....
ReplyDeleteNick, after reading your blog, I understand your apprehension with the upcoming transplant. Just prior to mine, I was emotionally all over the place with not knowing what to expect, etc. As I soon found out, the high dose chemo was not a big deal and the transplant was like any other infusion - over in minutes. One interesting side effect was a strange "corn" smell from the preservative which lasted for a few days, and it seems I also excreted this through my skin - so you might warn Jill!
ReplyDeleteYou may have some tough days, but overall, for me, it was not nearly as bad as I had imagined.
Although this is no fun, at least you and I are both young and strong enough to undergo this treatment and look forward to a brighter future with our families. Keep your positive attitude and before you know it, you will be on maintenance. Betsy and I look forward to the day we can all meet and celebrate our journeys and remission.