Sitting in a hotel room less than a mile from the Mayo Clinic, having already done my blood work appointment and trying to fill up the time until I see my doctor tomorrow. Then home again.
It's been a long, hard month. One of the big things I have to discuss with the doctor here is changing my chemotherapy regimen somehow -- both I and the Denver oncologist believe it's too damaging to my immune system. I've gotten sick every month at the end of the cycle since I started the Revlimid, culminating with 5 days in the hospital this month when I came down with bacterial pneumonia. Either the dosage needs to change or I need a new drug, I guess.
Monday, September 22, 2014
Sunday, August 24, 2014
Hmm.
Been a few weeks, but certainly some busy ones.
After the first month of Revlimid I had my monthly appointment with the local oncologist. Although we didn't know it at the time (took blood tests at that appointment), the Revlimid seemed to be working. My igG went from 3,996 on April 28 to 2,628 on July 18. My igA and igM are moving in the right direction as well, and my Kappa and Lambda light chain (free) numbers did too. This has continued through August's tests, although not as significant a drop in the igG.
BTW I couldn't explain those numbers if I tried, save to say they are the 5-6 markers that the doctors track my disease with.
After the first month of Revlimid I had my monthly appointment with the local oncologist. Although we didn't know it at the time (took blood tests at that appointment), the Revlimid seemed to be working. My igG went from 3,996 on April 28 to 2,628 on July 18. My igA and igM are moving in the right direction as well, and my Kappa and Lambda light chain (free) numbers did too. This has continued through August's tests, although not as significant a drop in the igG.
BTW I couldn't explain those numbers if I tried, save to say they are the 5-6 markers that the doctors track my disease with.
Friday, August 1, 2014
Beat Down.
I feel tired today and light-headed. Part of that is a lack of sleep -- in fact I'm hoping it's most of it, because if this is the new norm I'm not going to be a happy camper.
That's part of the problem with all of this -- you never really know what the new norm is. Not to mention between being so sick last week, the Neulasta shot Monday -- God only fucking knows what "normal" is like.
Yesterday was a difficult day. I haven't seen my therapist for several weeks due to scheduling and health-related conflicts, and as usual the walls fell down and I just core dumped everything that has been going on lately. Not sure how many epiphanies we really discovered, or perhaps even the value of exorcising all of that darkness yesterday. It's all kind of a blur today anyways, fogged by lack of sleep and a workday of putting out annoying fires.
Of note from the session, or at least sticking prominantly in my mind, is my lack of fear of death itself. Is that strange? I fear dying, not death. I don't want to feel pain, to feel myself slipping slowly over time. I don't want to see what it does to those around me who have to bear witness, and perhaps even carry the burden, as my life fails. I stay awake at night horrified by the thoughts of what a dying father will do to my daughter.
But death, on the other hand, I almost welcome in a way. Not to sound suicidal, but when you've lived so long with this monkey on your back, with these thoughts and pains and horrors and drugs weighing you down as you just try to get to work on time and be a good father and husband, it can sound almost comforting to just be able to put it all down for a while. Or maybe for good.
I hope this weekend is more cheerful than I feel right now -- really down and depressed, and it's so goddamn hard to find things to be hopeful about lately.
That's part of the problem with all of this -- you never really know what the new norm is. Not to mention between being so sick last week, the Neulasta shot Monday -- God only fucking knows what "normal" is like.
Yesterday was a difficult day. I haven't seen my therapist for several weeks due to scheduling and health-related conflicts, and as usual the walls fell down and I just core dumped everything that has been going on lately. Not sure how many epiphanies we really discovered, or perhaps even the value of exorcising all of that darkness yesterday. It's all kind of a blur today anyways, fogged by lack of sleep and a workday of putting out annoying fires.
Of note from the session, or at least sticking prominantly in my mind, is my lack of fear of death itself. Is that strange? I fear dying, not death. I don't want to feel pain, to feel myself slipping slowly over time. I don't want to see what it does to those around me who have to bear witness, and perhaps even carry the burden, as my life fails. I stay awake at night horrified by the thoughts of what a dying father will do to my daughter.
But death, on the other hand, I almost welcome in a way. Not to sound suicidal, but when you've lived so long with this monkey on your back, with these thoughts and pains and horrors and drugs weighing you down as you just try to get to work on time and be a good father and husband, it can sound almost comforting to just be able to put it all down for a while. Or maybe for good.
I hope this weekend is more cheerful than I feel right now -- really down and depressed, and it's so goddamn hard to find things to be hopeful about lately.
Wednesday, July 30, 2014
Long ride for only being a month.
Yeah I know it's been a while. Been a long month and not a particularly fun one.
Monday, June 23, 2014
One down, 729 to go.
Took my first dose of the new chemo regimen this morning. Revlimid pill chased with a low-dose aspirin, an Acyclovir, a Bactrim and some calcium.
Freaked out, depressed, anxious, you name it. Questions continually form in my head mixed with doubts that overwhelm slender, battered hopes. There's just no scarier thing I can think of than chemotherapy ... HIV drug regimens, maybe, but my understanding is that that's no longer a death sentence. Will this work? How long until it stops? Will I have side effects or totally reject the meds? The mind never shuts down.
Took Ariana to Tiny Town yesterday ... kind of ridiculous, but I saved the tickets for the train. Thought I'd insert them in my next letter to her, a little treasure to have along with the words.
Tuesday, June 17, 2014
Monday, June 16, 2014
Hi.
It's been a while, hasn't it? I suppose that's pretty rude of me -- when you have a blog about having a terminal disease, vanishing for two months isn't exactly "nice" to people who get news about you from it. So sorry, for what it's worth. I know anyone I actually know personally that reads this, however, can (and does) text or call to get updates if I'm gone from here too long.
The news hasn't been good which is the primary reason I haven't written. I've certainly thought about it a lot these past few months, but this is painful to me -- understand that most of the time I keep composed about all of this by doing my utmost NOT to think about it. I can't do that when I write, however -- it just all comes streaming out and most of this cancer-related stuff is really hard on me, emotionally, to keep going over and over. But I will try to keep this updated more.
To make a long story as short as possible, I was doing pretty good mentally and emotionally and then I got my 60-day results. They indicated that the stem cell transplant hadn't been very effective. That subsequently sent me spiraling into depression but I still tried to keep my spirits up, telling myself that Dr. M. at the Mayo Clinic had said the 100-day results were really the ones to pay attention to.
The news hasn't been good which is the primary reason I haven't written. I've certainly thought about it a lot these past few months, but this is painful to me -- understand that most of the time I keep composed about all of this by doing my utmost NOT to think about it. I can't do that when I write, however -- it just all comes streaming out and most of this cancer-related stuff is really hard on me, emotionally, to keep going over and over. But I will try to keep this updated more.
To make a long story as short as possible, I was doing pretty good mentally and emotionally and then I got my 60-day results. They indicated that the stem cell transplant hadn't been very effective. That subsequently sent me spiraling into depression but I still tried to keep my spirits up, telling myself that Dr. M. at the Mayo Clinic had said the 100-day results were really the ones to pay attention to.
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