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The new normal

I'm reminded almost every day that there are people who have it far worse than I do. There are people who have the exact same cancer I do and who are undergoing the exact same treatment, who are doing worse than I'm doing and having more problems. There are people with other kinds of cancer who also have it far worse than I do. My dentist told me about a friend who has a brain tumor that is inoperable, and so he basically is just traveling for whatever remains of his life. I try to be grateful for the fact that it could be worse, but to be honest, I don't actually feel grateful. Not that I'm currently feeling horrible, mind you, but I mostly feel so-so or worse. I thought by now I'd be back to normal, or close to it, but I guess that's not going to happen.

It's been a little over six weeks since my last radiation treatment. I can't tell if I've at least fully recovered from the radiation, partly because I've now had my first five-day sequence of chemo, which is the next phase of treatment. Five days in a row of a much stronger dose of the chemo than I was taking during radiation treatment, followed by three weeks off, blood tests, then repeat. The last chemo pill from the first five day stretch was taken last Sunday night. The five days of chemo seemed to go okay, but the days since then have been iffy. I lost my appetite again, and it's very easy for me to get exhausted. That seems to be the new normal: a queasy stomach and not much energy. Will it be this way for the rest of the year while I'm taking chemo five days every four weeks? It makes it difficult to make social plans or to get much done. Even writing movie reviews for my blog has become an intimidating prospect, whereas I used to be able to whip them out in an hour or so. It's hard for me to accept these new limitations. I feel truncated and reduced. The mini me.

And I still haven't started the Optune yet. The manufacturer and my insurance company still haven't reached an agreement on payment, apparently. If I'm going to have to pay out of pocket for it, I'm going to have to think seriously about whether it would be worth it. Of course I begin to wonder whether any of this treatment is worth all the money being spent on it, but that's a philosophical/practical-economics question for another day. As much as I realize or try to acknowledge that other people have gone through much more debilitating treatment than I have, the level of debility I *am* experiencing makes me think right now that once this first year of treatment is over, that's it. Come what may. Maybe I'll change my mind once this treatment is over and I'm allowed to really get back on my feet, I don't know. But right now this doesn't feel much like life to me. It feels like an endurance test.

Although there are still moments and days of happiness, of course, as when I went down to Corvallis on Wednesday to visit my brother's family. Lonnie had months ago concocted an elaborate ruse to bring his eldest son over for from Maui a visit without letting my sister-in-law know. I was basically used as a mask for all that. Terry was expecting me, but she wasn't expecting Ryan. Her reaction was worth the price of admission. Even though I felt like crap all the way down on the train and frequently felt like crap during the two days I was in Corvallis, that moment when Ryan came into the house and Terry finally recognized him was a thing of joy and beauty forever. So I continue to snooze a lot, try to get in as much walking as I can, and try to do fun stuff with the people I love, even if it means they end up watching me snooze a lot. It's life, I guess, but not one I feel content with.

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( 9 comments — Leave a comment )
gerisullivan
Apr. 11th, 2016 12:46 am (UTC)
Reading. Listening.
randy_byers
Apr. 11th, 2016 03:07 am (UTC)
Thanks, Geri. It's very much appreciated.
Andi Malala Shechter
Apr. 11th, 2016 02:35 am (UTC)
First of all, you probably won't be surprised when I say to you "fuck all that crap about who has it worse than you do". Randy, even if you whined and puled and threw things every damn day, you'd be surviving a very serious illness that tried to kill you. Okay? So fuck who has it worse or who has a different worse.

Yes, it's your new normal. Normals change. Hah! Ask me how I know. But they shift and alter and change again. Trying to write a blog post? A review? Are you kidding me? I was not dealing with any serious illness AS YOU ARE and I could barely write for what, well over a year. I didn't read a book for the latter half - half - of 2012. All because of something that happened to someone ELSE.

This isn't it. Or if it is, there are lots of ways around it. But you will not always feel so tired and beat down. This is chemo dammit, and it does evil things to you in order to keep you going.

Hold on, HARD, to those that care about you. Take what is offered if you can. Let yourself off the damn hook EVERY damn day that you tell youself "I should have".

Andi
randy_byers
Apr. 11th, 2016 03:16 am (UTC)
Thank you, Andi. It really means a lot to me to read these things from you. Not to be too pathetic, but I'm not used to being so dependent on others, or at least it's been 40 years since I was. I'm not used to feeling so fucking weak and helpless. But I suppose it's edumacational, eh? Maybe I need to learn some humility? Well, we'll see if an old dog can learn new humility.
Andi Malala Shechter
Apr. 11th, 2016 03:43 am (UTC)
It's not about humility. You got that, you really did. Being dependent on others SUCKS HUGE massive poisonous tree frogs. Yellow ones. I've had to deal with it for yeah, well over 30 years and you can see how good I am at it, right? It's the misery of being patient with yourself, not comparing what you do to what ANYone else does and letting yourself off the hook. For far more than you realize- but you'd let me off the hook or practically anyone else for the same things.

Pain and illness are tiring and exhausting and that is one of the nastiest things and hardest to get used to. I was supposed to be meeting regularly with Amnesty International, the White House and the ACLU by now, finishing another book and traveling to Tuscany. I woke up, had coffee, did laundry (note that I did not fold or put any of it away) and slept for like 5 hours. Weak and helpless is nasty. And look how successful I am at it after over 30 years. It will change. AND people get it better than we realize.

A
randy_byers
Apr. 11th, 2016 03:06 pm (UTC)
I'm smiling at the image of you having coffee with Amnesty International, Michelle and Barack, and the ACLU in Tuscany. It looks like a good time to me!
dalmeny
Apr. 11th, 2016 11:43 am (UTC)
I have never yet met anyone who enjoyed chemo. Not done it myself, but everyone I know who has found it revolting, debilitating, frustrating, and maybe other things ending with "ing". dmw had it fairly easy, yet even a dozen years later his body reacts badly to foodstuffs that remind it of the chemo (chocolate and duck, for some reason that sounds plausible to our biochemist friend). Other friends on chemo, weathering through it took almost all the energy they had.

try to do fun stuff with the people I love, even if it means they end up watching me snooze a lot

Did I ever write up the houseboat trip I took with friends when I was going through the worst of my pernicious anemia? That was pretty much exactly as you say. I'd surface for twenty minutes, people would chat with me, then I'd have to go back to my bunk and sleep for a few more hours, all amid beautiful scenery. On one over-ambitious day, I joined my friends for a hike. I lasted about fifteen minutes, after which I sat down under a tree and told them to go on and come back for me later, I hadn't the strength to go back to the boat or to go forward with them. I sat there on the floodplain for an hour or two, just me and the gum trees and a couple of kangaroo, huge sky above, cracked clay underneath my behind, napping sometimes, no sign of humans except my friends' footprints. I think about that sometimes when you write about the Northwest Coast, even though the scenery is nothing alike. But even though I felt like the worst houseboat-guest ever, my friends were happy to have me there.

But what I really want to say is: all love and hope.
randy_byers
Apr. 11th, 2016 03:11 pm (UTC)
Thank you so much for all of that. Chocolate and duck? Combined or separately?

Your description of the houseboat trip reminds me so much of the trip I took to the Olympic National Forest with my sister after the radiation was done, including the short hike to Second Beach, where I had to stop and snooze on a driftwood log for a while. Because it was a sunny day (whereas it had been stormy up until that day), it was actually very pleasant, despite the fact that I had absolutely no energy for exploration of the beautiful beach.
bibliofile
Apr. 18th, 2016 12:00 pm (UTC)
Andi is wise. Listen to the Andi!

<3
( 9 comments — Leave a comment )

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