I’ve been thoroughly enjoying not having any doctor appointments to blog about this month, but the medical mystery of whether or not I have some kind of chemo-induced lupus still looms.
I started back on the Plaquenil (hydroxychloroquine) last night. I’m not feeling a hundred percent—more on that in a second—but I think things are good enough that I can track whether the medicine is going to be helpful.
Plus, when I stopped taking the Plaquenil, I told the nurse practitioner (and myself) that I would start up again when I felt better. My next appointment with rheumatology is at the end of October, so given how long this drug might need to take effect, It seems like a good idea to give it another try now rather than later.
I was feeling better after the anxiety work, and I started reintroducing some of my favorite foods to test my IBS. Though I haven’t endured my worst IBS-C ever the past couple of weeks, constipation has definitely moved back up the problematic scale to affect my overall quality of life.
Over the weekend I had a buffalo chicken pizza. It tasted glorious but had jalapenos on it. I removed the jalapenos originally when placing the online order but screwed up another part of the order, deleted the wrong pizza on accident, and then forgot to remove the peppers when I added my pizza back. (Honestly, the buffalo sauce was probably too much on its own.)
No big deal, right? Ha!
The inflammatory effects were immediate. I picked the jalapenos off subsequent slices, but the damage was done.
Not that one single misstep undid me. The weather was unstable. I was already feeling worse, which kicked off a series of “eat this to distract yourself from the pain” cues in my brain. I knew what was happening, but my lizard brain wasn’t interested in the pedantic warnings of my prefrontal cortex.
At least I understand the process of the habit now, thanks to Unwinding Anxiety.
Anyway, it’s pumpkin spice latte season, so I was off my sleep game too, consuming caffeine like it doesn’t keep me on the edge of awake all night.
If there’s a way to be in abdominal pain and not also spiral into anxiety, someone out there please tell me what it is. Please.
I was up at 4:30 this morning again with intestinal distress. It was a mixed bag for me, emotionally. On one hand, I understand that the reason I still feel terrible is that this is not over. On the other hand, why is this still not over?!
When I don’t feel good, which is all the time these days, I watch Bob’s Burgers a lot. I recently saw the episode where Louise has an over-night with her class at the aquarium and gets constipated. Then I saw the Superbowl episode where Gene clogs a toilet at Jimmy Pesto’s. It occurs to me someone who writes for Bob’s Burgers has IBS.
Still no fever, which is good in all ways but the diagnostic ones.
Last night there was a family thing where everyone had calzones from Sauce on the Side—one of my favorites. Not only did I forgo the calzone to stay in bed, but I didn’t even throw myself a pity party about it. That’s how miserable I am right now. Eating rich foods sounds worse than enduring another four years of high school.
The only things bringing me GI joy right now are the Creamy Coconut Outshine bars. They’re like the pudding pops of my youth, but with coconut and without the rapist spokesperson.
I sent a message to the nurse practitioner to explain my situation last night and let her know I’ve stopped taking the hydroxychloroquine—at least until this clears up.
There are a few things that could have set me off, so I’m not ready to give up on it without a medical recommendation. However, it’s certainly not helping this present darkness, and I don’t want to needlessly develop a bad association.
A forty-four year old woman can be absolutely certain that something is the right thing to do and still pout and whine about it. Ask me how I know.
My oncologist called and reminded me there was that matter of the nodule on my lung that showed up in the last CT scan. With all the lupus stuff preoccupying my tumored brain, I’d forgotten about it. He didn’t though.
He recommended a biopsy, reasoning that if it is cancer, it’d be so easy to treat right now. A little zap and voila! Early detection and all that jazz.
I know he is absolutely right. But I also know my body’s proclivity for racking up procedures that don’t help identify a damn thing.
He’s going to put in the referral.
Damn it.
When I got home from the rheumatologist’s appointment Wednesday, I was so buoyed too. “I’m taking all of August off from doctor shit,” I told Dan.
Fucking hell.
Dr. Oncologist also sent my lymph tissue off to Cleveland Clinic for a second opinion, which was pretty cool of him. They agree the lymphadenopathy is not cancer, and a couple of other tests also came back negative.
So my lupus theory holds for now, and I’m well aware that lupus can cause lung issues too. In light of that: no vape, only edibles. I get better pain relief from edibles anyway.
That reminds me. While we were talking, Dr. Oncologist asked me again if I’d ever been told I have an autoimmune disease. Heh. So I told him about the lupus not being confirmed or ruled out and about the hydroxychloroquine, and he seemed to think that was a good plan.
I’ve been told numerous times over the course of many years that “something autoimmune is going on” but no one can ever diagnose what exactly it is. I’m trying not to get all twitchy about it while I’m typing this.
“Maybe you’ll get a disease named after you,” Dan joked.
I’ve been thinking about that and have decided if I could name a new disease, I’d give it some attitude. Like “fuck this noise disease” or something.
Anyway, that sound means it’s time to ask for financial help again. Small donations of $10 and/or sharing the link are always helpful.
I’ve only taken two 1/2 pills so far, but I feel different inside. Couldn’t say for sure if it’s the hope or the hydroxychloroquine, but damn. I want food. I feel connected to my memories. I don’t feel like I’m as packed-too-painfully tight in my own skin.
That’s the thing about chronic pain. Just the slightest bit of relief changes everything while your body struggles to understand what’s going on.
Sometimes when the pain inexplicably recedes, panic takes over and the anxiety cranks up. I wonder if I’m truly feeling better or just malfunctioning more.
It’s funny to ponder those things after the fact; I feel silly for worrying when I should be revelling. It’s terrifying to speculate in the moment though. When I’m all, “But I’m not ready to die yet.”
I don’t like my pain, but I’ve gotten used to it. And sometimes it’s difficult to leave abusers. No one needs to understand that for it to be true, least of all the abused.
When brain cancer feels less life-threatening than pain reduction, though, that’s how I know I’m fucked up.
Dan sat at the foot of the bed this morning, holding a big mug of coffee in his left hand and patting my shin with his right. And when he got up and walked to the kitchen, I thought: Wait just a goddamn minute. There was no extra jolt of pain when he touched me.
Who’s life is this? Who’s body did I wake up with by mistake? Don’t tell her I have it. Please.
The meds aren’t supposed to work overnight like that, so it’s probably just good weed, good sleep, and the revelation things don’t have to get worse.
Yesterday’s appointment with the rheumatologist went so much better than I was expecting.
“Did you see your lab results?” the NP asked as a way of determining just how much she needed to explain.
“I looked at them,” I said deflated. “From what I understand, they are inconclusive.”
“Yes and no.” She explained my results as essentially this: they can’t confirm a diagnosis of lupus, but they also can’t rule it out.
The NP says “It’s always lupus” btw.
HOWEVER, there is clearly some funky autoimmune stuff happening, and she and the doctor wondered how I felt about trying Plaquenil (hydroxychloroquine).
My mood changed immediately. I turned to Dan and said, “Hey! Maybe I can cure some COVID while I’m at it.” And that started a whole bit about Ivermectin and injecting bleach.
She remained very professional as we did our shtick, coping with humor. While acknowledging how absurd those treatments were, she confirmed what we already knew: 45* had no business distributing medical advice.
But this is not about convicted felons or pandemics.
This is about hope.
I didn’t get the steroids I thought I wanted, but I have something to try, y’all! I’m ecstatic.
And instead of hedging about whether this drug will work (it’s a slow burn and might take months to help if it’s going to) and protecting myself with pessimism, I’m going to shoot that hope shit straight into my veins.
I need this. I need to live in the joy of this present moment instead of wondering about the future. (See? Meditation is working.)
Who cares if the med doesn’t work? What I need most now is the possibility that I can feel better. There are things to try and doctors to help me try them.
As my spoonie friend Dawn taught me years ago: carpe diem, bitches. In this moment, I feel better. I’m going to notice it.
When the doctor came in and asked how I felt about giving Plaquenil a try, I think I even used the word “excited.” Not only am I optimistic right now, but no one mentioned peeing in a cup, and I don’t go back to rheumatology until the end of October.
Yee-freaking-haw!
Somebody get Howard Dean in here to help me celebrate.
So, as the rheumatologist explained it, lupus is a complicated diagnosis and the criteria were redetermined in the last five years or so. Swollen lymph nodes are no longer considered.
The way autoimmune things progress over time, though, I may one day qualify for it—or another diagnosis.
In the meantime, hydroxychloroquine could help me feel better and slow the progression of whatever this is.
