Adventures in Oncology

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Things are going ok. Isaac might even be doing better than I am at the moment.

I wish I could say I was the calmest, sanest, got-my-act-together-under-stress person you could find. Sadly, that is not the truth. Now, ’tis true that in acute moments of crisis, I can be steely and reasonably focused (other interpretation: numb and on automatic pilot). I wait until the worst is over before I start crying. Protracted crisis response, however, is not my forte. I might normally say, that’s what Xanax is for, but as long as I am the household’s chief chauffeur, Xanax is not an option. You do not want me behind the wheel while on Xanax.

Anyway, we’re muddling through. Isaac has radiation therapy five days a week, Monday through Friday. My understanding was that it will go on for maybe two months. A nurse I spoke to yesterday (who was handling paperwork, not working on his case) said they don’t do it for that long. I hope she’s right. Then again, he doesn’t have a run-of-the-mill cancer. Damn my taste for exotic men.

He had one round of chemotherapy while in the hospital. That goes on a 29 day cycle (or a 32 day cycle–I’m not always sure what the oncologist is counting as Day 1). The next round will begin the day after Thanksgiving. Great–Black Friday. How the heck am I going to tell the bosses I need to go with him?

Chemo is a bit of a production. A lot of people go in for a few hours, get hooked up to an IV, then go home. What they’ve got my boy on is a drip that is continuous for four days straight. However, they are going to do this as an outpatient. He’ll have some sort of regulating dispenser on a belt pack that he’ll wear round-the-clock at home.

However (lots of “howevers” in Oncology Land) in order to do the chemo, he has to go into the hospital (next week, I think) to have what’s called a PICC (Peripherally Inserted Central Catheter) line inserted.  It’s a tube they put in his upper arm that runs all the way to the heart.  He had one in the hospital, but they removed it before he came home. This one, they said, will be smaller than the one he had before. It might be left in indefinitely.

We learned a lot about this yesterday (Tuesday) at the oncologists’ office. Now, that’s a place I would not like to work. Don’t get me wrong, the staff is wonderful. They have been without exception pleasant, kind and caring. Yesterday, I came in with a bunch of paperwork that I needed for my family medical leave right at the deadline to submit it. The nurse who filled it out was pretty stressed by the rush, but she took care of it for me while I stood there. I kept apologizing for waiting until the last minute. She kept telling me, “I know you’re under a lot of stress,” while I stood there putting her under stress. I was so grateful I wanted to cry.

What gets to me is that the place is so crowded with patients. So many people with cancer! All those lives disrupted, not just the patients but their families, too. I just feel drained when I there. Poor magical skills on my part; you’d think by now I’d be better at shielding. I’m not, I admit it. I get overwhelmed by the energies of people around me.

Isaac, bless him, says I shouldn’t go if it is too much. Not a chance. It’s really important to me to be there. You’re given so much information at these medical meetings, not all of it sticks. If I have to then get it second-hand from Isaac, more data gets lost. I went through that when he was hospitalized and I was too sick to visit him. He was sick as a dog with all the infections, and trying to retain all they were telling him; I was sick as a dog on the other end of the phone trying to understand what he was telling me, while he wasn’t always remembering what he told me and what he didn’t. You need two sets of ears, at least, just to process all this stuff.

So, the oncologist says it may only take two-three months before he’s considered to be in remission. The obvious cancer is responding well to the treatments. The wild card is what else may be going on in his pelvis. The oncologist wanted him to get a PET scan, but the PET scan people said at this stage, there’d be false positives so don’t do it, but we couldn’t get hold of our oncologist because it was a weekend so another doctor at the practice said cancel the test, but our main doctor said yesterday it would have been ok, but now for sure it’s too late, so she doesn’t know what else may be happening … see what I mean? Medicine is art as much as science.

Day to day, nothing terribly exciting goes on. We go to medical appointments once or twice a day. Maybe we’ll go walk a little if the weather is nice, then he comes home and naps.

He has trouble eating because of mouth sores. Also, he’s on an extremely restricted diet. Everything has to be low fiber and low residue. That means all the things we’ve been conscientiously eating for years–fresh fruits and vegetables, brown rice, whole grains–is mostly off limits. No skins, no seeds, white bread, white rice, bland, bland, bland. Yep, he’s losing weight. The struggle is making food he can eat that has some nourishment for both of us. One strategy for keeping weight on cancer  patient is to feed them milkshakes and all the other high-sugar treats you normally wouldn’t indulge in every day. However (lots of “howevers,” remember?) he doesn’t tolerate cows’ milk all that well, which puts limits on ice cream. Still, we’re going to get a blender today so I can make him smoothies with bananas and and soy ice cream. Maybe tofu, too. If I can get out of this funk enough to bake, I’m thinking banana bread and zucchini bread. I’ll have to peel and seed the zucchini, but that’s no big deal. Of course, I normally bake with whole grain flours. Not now. Now it’s gonna be white, white, white. Did I mention I don’t digest wheat very well? Another “however.” And I’ll have to put the brakes on myself so I don’t get fat while he’s getting skinny.

Isaac, being by nature more upbeat than I am, did take one dramatic, proactive step. He was already noticing his hair and beard coming out, so he went to the barber and had it all shaved off. I thought he was just going to get it cut very short, but nope, out came the razor. He’s so cute when he’s impulsive.

before haircut 1before haircut 2bald 1bald 2

I have to get myself together enough to go back to work soon, or we’re going straight to the poorhouse.  Donations welcome. And thanks for all your good thoughts and concern. More later as I think of it.

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3 Responses to Adventures in Oncology

  1. David K. M. Klaus says:

    A PICC line is so that Isaac only has one needle stuck in him with a connection port attached, rather than have to stick a large needle into him every time he needs his chemo treatment. It is actually less damaging, and is standard care for cancer patients.

    What’s unfortunate is the level of our understanding of how various cancers begin and propagate through the body. We learn more each year, but we still have far to go, as chemotherapy consists essentially of using poisons which are designed to kill the cancer cells before they kill the rest of you, with the idea that you stop at the point that the cancer is dead but your entire body hasn’t been poisoned to death yet.

    There is hope. Oberon is cured. Jerry Pournelle had a brain tumor so deeply embedded that they didn’t even want to do a needle biopsy for fear of causing traumatic brain injury just with the needle. Yet after targeted radiation treatment, he is cured — even just ten years ago his case would have been helplessly fatal.

    Life is precious, which is what makes it so worth fighting for. Every time someone dies, a universe ends — but She Who created the Universes remembers Her warriors who fight for Her against the Entropy.

    So mote it be! So say we all!

  2. Pingback: Listening for Isaac Bonewits « just a blog

  3. David K. M. Klaus says:

    It’s been over two months since you’ve posted an update. Are the both of you doing well? Badly? Is Isaac recovering? Dying? Maintaining? I’m not in the grapevine, so I don’t know beyond what you post here.

    Putting pressure on a cancer patient is the last thing I want to do, so only when you feel up to it, and not before, please keep us apprised of your conditions — but don’t take energy away from recovery.

    We love you and worry about you. Both of you. Be safe and healthy.

    David

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