Saturday, March 31, 2012
If there's anything that suffering has taught me, it is that there will always be more of it. And how can we get ready? Can we get ready?
We have to believe that when it comes, we will find the strength to weather it within. But it's not something we can know, and I'm not sure it's something for which we can really prepare.
Is the best thing not to think about it? Worry won't make me more ready, will it?
Friday, March 30, 2012
I'd like it all to be gratitude and empowerment. But sometimes I just want a foot rub to distract me from the throat pain in the same INSTANT that I want my girlfriend to stop acting like I'm a big baby and she needs to take care of me 100% of the time. I can go to the hospital by myself. I can handle my ailments. I don't know why I am projecting all that crap onto her just because she is always so ready to help. She's not trying to make me feel bad at all. But if I start to feel better, then I have to be a regularly contributing human in our domestic and interpersonal dynamic, and not The Sick One, and I'm not entirely ready for that.
Readiness is a sore spot right now. Everyone's being really positive about how I'm just blowing through radiation treatments. If I hear the phrase "home stretch" one more time I am going to lose it. You can't just fast forward to the part where I feel better with stupid expressions. I am in treatment with worsening symptoms and there will be a recovery period of weeks, maybe months. I carry around unpleasant sensations all day (including my awful shin splints -- not a cancer thing, but I can barely walk, it is ridiculous) so don't expect me to bound into the room and talk about cancer like it is already in the past.
And I hate it when people tell me what's going on in their life and then have to add "Obviously it's not as bad as cancer." Deal with your guilt better. I'm here to listen to you tell me about your life. Do you think I am keeping a secret suffering tally in which I am always winning? Sort of assumes I am a douchebag, if my actual thought in that moment is "Jeez, this guy with his bad day at work. Doesn't he know I have cancer?" We both know cancer basically beats traffic jam. That doesn't mean I am incapable of sympathizing with how obnoxious all those bad drivers are. Plus, everything is relative. Everyone has their shit. When I am done having cancer I will still have problems and how much relief will I really even be able to give myself by thinking "at least I no longer have cancer"?
I know people are tired of hearing about cancer. Tired of not knowing what to say, mostly, which I am also resentful about. Just say "That sucks" every so often SO THAT I KNOW YOU ARE STILL LISTENING. It's not too much to ask and it really isn't that hard. No one expects you to say something deep that heals my soul. The whole "it's so overwhelming, I don't even know what to say" response is such a cop out.
In fact, here's a response to one of my recent email whines about people being vapidly religious and positive at me. To show you how it is done:
"I have trouble being positive about most things, so I can only imagine my cynicism if I got dealt the cancer card. I would be weirded out and think you were actually dying if you became zen-like and cheery. And between you and me, I think most people who find solace in god can't be thinking all that hard."
Wednesday, March 28, 2012
I have a ring of red skin around my shoulders. I am lotioning often. It is odd.
My throat is sort of sore all of the time. I bought lots of various lozenges and candies.
I'm not sure what's going on with food -- on the way down it often encounters resistance, but not like constricted esophagus resistance. Not just like the tube is swollen and smaller. It's like my stomach says "Nope" and sends up a fleet of burps. I dunno, eating sort of hurts.
Which is funny, because I am doing an awful lot of it. I am not worried about putting those lost pounds back on. I've missed food and I am making up for lost time.
I am a little concerned by last night's "sleep." I had the sweats a bit, not sure what that means. And I had to get up to pee urgently two times in the middle of the night despite emptying the tank before bed and again when I got up in the AM. Seriously I'm talking 4 major pees in under 7 hours. Where's all that liquid coming from? Cancer's doing something nefarious, I just know it. Melting away, I hope.
For feeling as crappy as I do, I am doing really good. That's relativity for you.
Monday, March 26, 2012
This week. A radiation dose first thing, and then back to playing at real life, waiting for the other shoe to drop. Will it be enough, as the week progresses, the radiation? To keep this awful last ditch attempt at bay of my bastard cancer to cause me misery?
Something strange happens while I'm lying there though. My thoughts open up and take a shape: the night of one act plays my school put on in 10th grade. Caught up in my memories of this night are a handful of the narrative elements that propelled me through that year. My hopelessly unrequited amour for my best friend's girlfriend, for one, who shot me in the heart that night with an a cappella song inspired by a rape. And the play I had tried to direct, a visualization of a poem I didn't like or understand, which I had been talked into by one of the few people at that place who could make me feel intellectually insecure. I suffered from a dearth of good ideas or interested actors, so I abandoned the piece, only to watch it be put on (much to my surprise) under the assumed leadership of the head actress, who I rather despised and who had missed several key rehearsals.
The coup was mainly an annoyance. I was glad to have my name detached from the project. I got a lot more ambivalent about theater that night, thinking how collaborative it's supposed to be and seeing what happens when you lack strong creative direction. I was starting to get that I was a writer only, though it would talk similarly disastrous forays into TV production to bring the point home. Any project I worked on, it was like either I had to tell everyone what to do and they resented it, or I had nothing to say so nothing happened. Writing is between me and the page; it's just a safer gambit. I only ever let down myself.
It was strange and familiar to lie awake like this, my past opening up to put on a little show. I'm usually quite the dweller on things, and have wrecked many a good night agonizing over much best left untouched. Now that time has passed, though, a harmless reverie to pass the time, reconnect some neurons and remember where I came from -- it was welcome. What was so odd about it is that I feel like it hasn't happened in so long that I'd just stopped being that person. For months, waking up in the middle of any part of the day or night, my thoughts have run first and last to my stomach, my lymph nodes, my dripping sweat or at least my hair, which nightly migrates from my head to my face.
The extra challenges of what my body puts me through during the day and the extra anxiety about where it's all going, when it's ever going to end, if I'll ever feel normal again... that's the new normal I've long since adapted to. I don't let my thoughts run much farther back than October and it's impossible to focus them past the next few days. Mostly I just consider what happened in a TV show I watched recently while I take some more Ativan. Even the books I started when the chemo first began to wore off have been left largely untouched.
Everything is cancer, everything else is on hold, except for half an hour this morning when I should have been asleep and for whatever reason, I went back into the past and for a time remembered that I used to be something else.
Friday, March 23, 2012
And now there is sort of a plan for when the Dexamethason runs out on Monday -- if the inflammation, pain, and fevers return next week, we will go back to the prednisone on a tapering schedule. So start with a mega dose on day 1, then less the next day, and so on, to try to limit the side effects and dependency issues of the drug.
The bad news is that I already have thrush, or what I am calling Athlete's Mouth. Yes, it is that gross. I scraped a bunch of fungus off the back of my tongue already. This was definitely an oversight on their part -- that anti-fungal regimen should have been prescribed a week ago. But I guess there's no sense complaining. At least I'm not in pain. I'm still breathing. I'll get plenty mad at everybody if the cancer doesn't go away. Trust me. Then there'll be so much rage to go around, I won't be tolerable to anybody, medical practitioner or layperson, friend or stranger.
But tonight could be a start. I can't drink. Or smoke. It's Friday night and short of abusing all the oxy I'll probably need, I've got nothing to do with all this steroid crazy except watch Star Trek reruns and see how much of my dismal attitude Kathryn can take before she starts to cry. I am a danger to myself and others.
I've tried not to say this so many times, because admitting it seems like a weakness, or giving away my secret problem, and saying it only makes it worse, but god, sweet sweet Jesus, I NEED A DRINK. So damn bad, just to pour a whiskey, pound a beer. To mix the gin and sink into oblivion.
And get this: it's a 40mg dose, but the pharmacy only had 4mg pills. So I have to take 10 pills at once. And with it the docs have prescribed this weird yellow liquid I need to swish and swallow 4 times a day to prevent thrush, which is a yeast infection IN YOUR MOUTH. Don't even Wikipedia it, the pictures will make you hurl.
None of this -- the pain, the inflammation, the return of cancer symptoms, the need for steroids -- was discussed before I started radiation. I was basically told I would feel better as the chemo wore off and that I should worry about some dry skin and a sensitive throat. Good thing I am seeing all my doctors today, because I definitely need to have a better sense of what the fuck is going on, and to ask the most pressing question: does all this mean my radiation treatments are less likely to cure my cancer?
I want everybody just to know so that you know that my hair is still falling out. I now wear a hat pretty much 100% of the time. I lost 5 more pounds in the last 2 days. Can't beat the cancer diet. I really do look like a sad, sick version of myself.
Tuesday, March 20, 2012
My doctors gave me prednisone, a steroid, to fight the inflammation, and it worked wonders. Then they stopped. They say the radiation itself will clear this problem up, especially now that I've started going every day. And while I am managing those daily visits like a non-barfy champ, they've offered me no relief from the extreme pain I am in except more and more oxycodone, and time.
What I hate most is narrating medical developments. There aren't supposed to BE any more developments. Just 5 minutes a day, zap under the mask, and all this madness ends. I'm zonked on painkillers and still in pain. I'm not eating or sleeping well when I'm supposed to be on the mend.
Why won't this shit just end already?
Wednesday, March 7, 2012
Here's the scoop: my last PET/CT still showed uptake. In other words, the radioactive sugar that the cancer eats (thus lighting it up on the scan) is still being picked up in enlarged lymph nodes near my neck.
My doctor says that these sites are where the cancer started and they are resistant to chemo. This places me in a minority group of people with Hodgkin's lymphoma for whom ABVD chemo doesn't just melt all the lymphoma away. So I am done with chemo for now and maybe forever! Huzzah! (See how that good news is, like all of my good news, wrapped in bad news? Uncertain news at least. Like instead of a bacon wrapped scallop, imagine the bacon itself is wrapped in some kind of weird smelling fish.)
The positive spin is that radiation (which I start soon -- preliminary meeting is tomorrow) is still highly likely to knock the rest of the cancer out while being much less shitty to my body. My prognosis is still good.
Unless I'm in an even smaller minority of people with lymphoma for whom both these treatments are not successful, but why would I ever expect that to happen?
I can't do a follow-up PET/CT until 4-6 weeks after radiation treatment has ended. The treatment is every day for a month, starting next weekish. So I won't know if it worked until... June sometime? If I still have cancer then, I will need to restart an even rougher chemo, and I think I might lose my job at that point. FMLA only covers you for so long. Not sure what happens to my insurance if that happens. Let's cross those bridges when we never get there, thanks.
My doctor has confirmed that my "anticipatory nausea" hospital response (I puked when I went for my PET scan, so it's officially bad news) is Pavlovian and can be reduced with drugs (Ativan really doesn't seem to be helping) and maybe Cognitive Behavioral Therapy (CBT). The problem is not strictly psychological; my body needs to be trained to disassociate the hospital from the poison I got there.
CBT would mean probably exposure therapy: engage with the stimulus over and over (the hospital) separate from the associated condition (chemo sickness) until the connection between the two has become unlearned. This is basically my radiation treatment plan. I mean I *have* to go to the hospital every day for a month. So eventually I will break the conditioning as my body realizes that it is no longer being poisoned every time I go to MGH.
Or, you know, I will puke every day for a month. Whichever.
Since the advent of good, modern anti-nausea meds, this kind of conditioned reaction is very, very rare by the way. Only a small percentage of cancer patients have this problem anywhere near this severity.
Sometimes it sort of feels like the odds are against me by virtue of being in my favor.