The “New Normal”: The Funny Thing About Cancer continues . . .
So I had a PET-scan recently. It was almost pleasant. Really.
These are tests I have to have periodically, an irritating necessity, just something I have to do to make sure that my “history with high-grade lymphoma” is staying where it belongs — in the past.
Don’t you love that phrase, by the way? “High-grade lymphoma.” Makes it sound almost desirable, doesn’t it? Like something everyone should want — “I’ll have a little high-grade lymphoma with my coffee.” “High-grade? Damn, I wish I could get me some.” Maybe even something that fuels your car — it certainly moves fast enough: “Absolutely, fill the tank. Don’t you dare use that cheap stuff, I only want high-grade lymphoma in my Hummer stretch limo.”
But I do like the first part of that phrase the doctors are using these days, “a patient with a history of . . .” History. That’s something I can handle.
My cancer’s in complete remission, and they hope it is “cured,” though what that means exactly, no one knows. There is no five- or ten-year prognosis for my cancer, because they have only known about it for about 4-5 years and have been successfully treating it for only 3-4. Nothing funny in that, really. But there is hope.
As Mark Twain once pointed out, there’s no need for humor in heaven.
My transplant doctor did some complex blood testing; she says that my blood chemistry balance is perfect, fully recovered from the high-dose chemo that wiped my immune system clean before the stem-cell transplant. This, she tells me, is my “new normal.”
Now, I have some mixed feelings about that. On one hand, that’s great news — better news than anything I dared hope for. On the other hand, this “new normal” takes some getting used to. The doc tells me I can eat anything I want now — so long as my body can handle it. Terrific news — but the last two times I ate in a restaurant, I spent more staring at the inner door of a bathroom stall than I did at the table. And there wasn’t even any witty graffiti to read. Don’t worry — I didn’t leave any, either; it was actually a nice restaurant. And no one else got sick, even though they finished my lunch for me. My “new normal.” At least I’ll save some money.
I’m no longer neutropenic (a really low white-count that means your body lays out a welcome mat and puts a light in the window for any germ out there — “Come on in, the eating here is fine!”), which means that the world is a lot less scary now (see my earlier post, It Takes All Kinds, about germs in public places). But whenever I get sick, it seems to take 3-6 weeks to get rid of, and I develop two or three bacterial infections along the way. I’ve had more antibiotics in the past year than I’ve had in the past 40. Between chemo treatments, they kept me pumped full of the stuff plus antivirals, because my blood counts were so low that I couldn’t afford infections. Now, getting infections seems to be my new job. The doctors call it “re-training” my immune system.
That’s some on-the-job training I could do without. But it’s better than being unemployed.
So — the “new normal.”
In addition to the blood chemistry, it means I also get to become acquainted with my new brain. There’s this thing all cancer patients know about — called “chemo brain.” Really. That’s the fancy medical terminology. Chemotherapy is rough on cancer cells, but it’s pretty feisty with the cells in certain parts of your brain, too. They’ve actually done studies showing that post-chemo patients have trouble with things like finding a recipe, making a list of the ingredients needed and shopping for them. The list and the shopping tends to be incomplete. If you make the list for us, we can get the things on it, but until you realize this, cooking becomes an adventure in improvised ingredients. Which isn’t always a bad thing. I only found out that this was a documented effect of chemo brain after the worst of it had past. I had just thought I was an idiot.
Organizing things remains a challenge, though, at least for me. So does remembering. Or finishing anything I start. My house has become a trail of half-finished tasks — laundry half folded, dishes half done, groceries half put away, books laying around all over, half finished.
Okay, I can’t lay the blame for that last one on the chemo.
But I now have the attention span of a gnat. It’s like I’ve become my children. Can’t keep focused to save my soul. I’ll be washing the dishes, and out the window, a bird will fly toward the bedroom. Which will make me wonder if the bed’s made. Without even drying my hands, I’ll wander back there, only to notice the half-folded laundry as I pass the couch. I’ll stop, and fold a few things. A stray thought will cross what’s left of my brain . . .
And I’ll remember that I started this blog, writing about PET-scans, which I mentioned in the first line, then started off on another trail altogether.
Chemo-brain. It’s an adventure.
But it has its perks. Any time I can’t stay on topic or come up with a good transition, I can just blame it on chemo-brain. Maybe this “new normal” isn’t so bad.
So. PET scans. The PET-scan went well — almost a pleasant experience.
No, I wouldn’t really go that far. But how different it is when the nurse/tech is efficient, gentle, and more concerned with safety and sterile conditions than even I am. The last time I had a PET-scan, the nurse/tech was a guy that made Sponge Bob look like an intellectual. And his idea of adequate cleanliness was that he didn’t actually wipe the IV needle on his pants before jamming it in my vein. But this nurse was lovely. She even left the metal-encased syringe with the radioactive solution in another room until the IV was all set and flushed with saline. And the radiologist doing the scan this time had a sense of humor, too.
All in all, for being injected with a radioactive tracer and spending an hour in a claustrophobe’s dream tube with my arms above my head, being bombarded with more radiation, it was almost fun.
But it was a helluva step up from the last time. And while the wait for the data and the trying not to think about it was hard, the insurance company actually kept me entertained.
I have to give it to the insurance company. When every decision was literally life and death, they ponied up fast, processing most of the claims quickly and efficiently, churning out the checks like they were printing money. After my deductibles, copays, repays and replays, that is. But once the transplant was over, and the urgency past, they started questioning everything. Everything.
Insurance company: About this PET-scan. We need more info.
Me: What info?
Insurance company: Like which doctor requested it.
Me: I think that might be on the pre-cert. forms. I mean, like, when you okayed the procedure, didn’t you ask who you were talking to? Isn’t the doctor’s office name printed on the fax they sent – you know, like letterhead?
Insurance company: We still need them to inform us who ordered the scan. Did you have a doctor’s order for it?
Me: No, I make a habit of asking for fun tests I don’t need. I pass a lab and it’s compulsive, I can’t help myself. I walk in and I ask, what’s the most dangerous test you’ve got? Give me one of those. PET-scan? What’s that? You’ll give me an IV? (my favorite!); shoot me full of radioactive fluid from a syringe encased in lead and metal – straight into my bloodstream, and let it simmer for an hour before you take my claustrophobic self and shove me in a tube and turn the radiation up for 40-60 minutes, putting all tanning beds to shame? Really?
Hell, I’ll take two.
Did I have a doctor’s order for this? That has to rank right up there among the most intelligent questions I’ve ever been asked.
And then there was the coffee shop and cafe I tried to stop at after the PET-scan.
Huh? Bad transition? No connection between insurance companies and coffee shops?
Anyway — I was hungry after the scan was over. You’re not allowed to have even a sip of water for four hours before the PET-scan. And since the scan was scheduled for 8am, that means I hadn’t even had water since I brushed my teeth last night. So I park, and walk to the cafe. I’m shivering, obviously cold in the still chill morning air, and I am about 5 feet from the door, my intention clearly obvious, I guess, when I hear a voice.
“We’re not open yet.”
I look around and see this guy unchaining the chairs from the outside tables. “But what about that sign, there, the one that says “OPEN”?”
“Oh, that. Somebody forgot to turn the sign around last night.”
“So, when do you open?”
He opens the door to look around at the clock. I feel the blissful blast of warm air and smell the coffee. I’m a little shaky still from the scan, though they tell me every time it is not supposed to have any side effects. I’m so cold and thirsty, I start to drift forward.
“Not for another ten minutes,” he says, raising his hand to stop my movement forward.
“Can I just –”
“Not for ten minutes,” he says, firmly shutting the door and going back to arranging the outdoor tables and brushing the icicles off the umbrella thingy. Like any one is going to want to use those tables, balmy as the temperatures are today.
“Fuck you,” I say, and walk to another restaurant down the street.
“Really, Mom?” My teenaged daughter laughed disbelievingly, as I was telling her the story later.
No. Of course not. I actually thanked the man for his kindness in answering my questions and his attention to punctuality, which I’m sure makes him a wonderful employee, after which I and my money walked briskly away.
Because my momma raised me right. But she didn’t raise a fool.
Well, not mostly, anyway. And I can blame that part on the chemo-brain.
“New normal.” Maybe it won’t be so bad.
© Sharon D. McCoy, 18 February 2013