It appears I was a bit hasty in my judgment of dexamethasone. Still suffering after a round of chemo without it, I can now see that in spite of its horrible side effects it was masking some of chemo’s even more horrible side effects.
I won’t go into the full details of my emetic escapades, more for my sake than yours. But I will just say that Activia is off the menu for a few days while I purge my scent memory.
There was some discussion between Dan and I about what to do next, seeing how I spent maybe three hours not in bed this past week.
“You could try taking the dex only during the week you do chemo,” Dan suggested.
I whined something about not wanting to while admitting it wasn’t an unreasonable suggestion. “It was just so hard to quit. I almost think I’d rather suffer some new evil than go through that again.”
For now I’ve decided to take more Zofran, despite the headaches and hiccups. I’ll use cannabis to make me want food and Zofran to keep it down.
At least until the next thing. Because there is always a next thing.
My eyes still well up when I remember my oncologist entering the exam room on Wednesday. He walked in holding a print copy of my MRI report. I’d had the procedure done around 8:30 that morning, and when Dan and I met with him about three hours later he was holding the results.
“The tumor is smaller!” he said. He bent down to show me the part of the report with the happy news, and read it out loud to us.
“Oh my god! That’s fantastic!” I said. “I am so happy!” Our three faces were nothing but teeth, so big were the smiles.
When it was time to discuss my course of treatment back in February, I never considered not doing the chemo and radiation. I knew that some patients opted out, of course, but my personal philosophy was to do anything and everything the doctors recommended.
(And also legally vape some weed and ingest some “enhanced” peanut butter cookies.)
That does not mean, however, that I never second-guessed my decision after a dose of chemo. When you’re so weak and sick you can’t get out of bed for 7-10 days and the MRIs all come back saying the tumor is “stable,” you do wonder whether it’s worth it, making yourself that miserable for no significant results.
But when those thoughts did creep up, I tried to picture my neurosurgeon back in February standing over my hospital bed the night before my craniotomy. “You’re young, and all of us believe this will help you,” he said.
“All of us” was a big deal, because there were like 40 doctors weighing in on my case.
They learned just what kind of mutant my tumor was, and they picked a treatment course that had a history of working. I’d try to remind myself of that every time I had to swallow capsules full of medicine derived from mustard gas.
After taking a few minutes to celebrate my withering bundle of astrocytes, Dr. A asked if there was anything I wanted to discuss. So I brought up that my fatigue was getting unbearable and asked whether he thought I should go back on an iron supplement.
(About a year ago, my primary doctor had asked me to give them a try, but I’d stopped after being admitted to the hospital just because I had SO MANY PILLS to take that I forgot about the supplement.)
“I really don’t think iron is going to help. This fatigue is 100% my fault. It’s my medicine that’s causing the problem. So I’m going to prescribe you Ritalin to take following your next round of gleostine.”
I was kind of surprised. I mean, Ritalin? Really? But I see now that it’s also used to treat narcolepsy. And the generic name of the drug starts with “meth” so….
It’s been about 72 hours since my first dose of gleostine, and I wanted to let you know how things are going.
No Puking, Hooray!
Although I was awash in waves of queasiness for the first 36 hours or so, my stomach never gave up the goods. (Thanks, Zofran. Thanks, medical cannabis.)
This is particularly encouraging because I’m also just a few days into another dexamethasone taper, and I learned at the oncologists’s last month that dex is sometimes prescribed as an anti-nausea med. So it could’ve been a double-whammy. But it wasn’t. I am grateful.
So Much Fatigue
The most severe side effect I’ve experienced is a crushing fatigue. It surpasses any fatigue I’ve experienced to date and feels like my legs and arms are encumbered with cast iron while I try to wade through peanut butter.
The good news is that it seems I’ve reached peak fatigue already, and I’m starting to get some energy back. The new sativa strain I vape during the day actually gives me a little boost of energy, but it’s not powerful enough to completely counteract the chemo.
We celebrate tiny miracles in this household though. Usually with food.
Gearing Up to Say Goodbye to My Eyebrows
I rubbed my eyes today, and noticed a disconcerting number of eyebrow hairs just fall out. I have no idea if this will be limited to eyebrows or if I’ll start losing the hair on my head too.
And I was just bragging yesterday about how I was going for an Anne Burrell-inspired hairdo as my hair had been growing really well the past couple of weeks.
No Allergic Reaction
The absolute best news is that I’m able to tolerate the gleostine. Having a few extra weeks of treatment made it possible for me to enjoy some outdoor time and play Just Dance, but I was getting itchy about doing something to proactively target the brain tumor.
Next Monday is my Temodar allergy test. To get accurate results, there are many medications the allergist has asked me to stop taking. Things like Benadryl, hydroxyzine, nortriptyline. (Not that I take these things regularly, but I’m especially supposed to not take them right now for reasons I will assume are obvious.)
Medical cannabis is not on the no-no list that was mailed to me, but then it wouldn’t be. So I took myself off of it too. Because I don’t want to have to repeat any tests or suffer the consequences of inaccurate results.
So when I got up this morning stiff, sore, unrefreshed, and the most not-morning-person I’ve been in a couple of weeks, I said out loud “I miss you, Pot.”
Eating half a medical cannabis peanut butter cookie with a scoop of ice cream at 7 p.m. has become something of a ritual for me. Like being tucked in by my parents when I was five. My 1:1 CBD/THC cookie kicks in about 9:30 or 10:00 pm. It’s then you’ll find me relaxing in my recliner until I can’t keep my eyes open and I move to bed.
I sleep well until my dexamethasone hunger and the rising sun wake me up. And let me tell you, after literal years of pain-related insomnia, good sleep is perhaps my favorite thing about cannabis.
But that’s not really what this post is about. It’s just my roundabout way of explaining to you why I was up and restless last night and how I knew that Dan was awake all night long too, despite trying to shuffle quietly around the house.
“You had a rough night? You were up a lot.”
“Yeah,” he said. “This tooth.”
His tooth has been nagging at him for months now, since about the time I was hospitalized. And because Dan has this habit of doing everything for me and pretty much nothing for himself, he’s been ignoring it. Or trying. I’ve noticed the Anbesol sitting out on the bathroom counter a lot more lately.
“You’re calling the dentist tomorrow. I know we don’t have dental, but we’ll figure it out,” I said.
“You have to put the oxygen mask on yourself first and all that shit.”
“You’re no good to me dead, Poehlman.”
This happened with another tooth a few years ago, and it turned into an emergency room visit and oral surgery a few days later. (Dan takes a biologic that makes him a high risk for infection, and the tooth abscessed, and…)
He has promised to call first thing tomorrow morning. If he requires oral surgery this time too, it will mean finding someone who can 1.) sit in the waiting room while he’s under anesthesia and 2.) drive him home when he’s finished and asking staff what time the X-Men are coming over for dinner.
It will also mean asking for more money from our support system.
As everyone’s probably tired of hearing by now, we have no income at present. So in preparation for the costs associated with The Next Thing™, I’m adjusting the goal for my YouCaring campaign and asking you to consider giving—or sharing the campaign on your blogs and social media.
I’ve read that it can take a couple of months for the iron-deficient anemic to feel all better. I don’t know what that means for me, exactly. I don’t think I’m anemic per se; I think whatever is wrong with my body has depleted me of essential vitamins and minerals.
So what’s my next step? To keep taking the iron.
If everything is magically fixed because of it, hooray! If it’s not, at least I feel alive now. I’m also trying the probiotic thing again. I honestly don’t know if the Align helps, but the GI doc recommended it and I’ve got four weeks of capsules left.
I’m also now officially convinced that the weight I lost over the last few months had nothing to do with my willpower and everything to do with my IBS. Reversed course on the IBS and all the weight came back. But fuck it, weight is not my first priority. It’s not even top ten right now.
So pill roll call. Maybe TMI for some, but mostly posted so my fellow fibromyalgia patients can compare/contrast.
Levothyroxine*, daily AM Tri-sprintec lo*, daily AM Ferrous Sulfate (iron) 325 mg, twice daily with meal Zinc, D3, Magnesium, Calcium combo pill, twice daily with meal Align, daily with lunch Nortriptyline, daily at bedtime Nexium, every other day/as needed (Rx is for every day, but I discovered I could be symptom-free taking it less frequently) Medical marijuana, 1/4 gummy as needed at bedtime
* Prescribed many years before I had any fibro symptoms, but thought I should be thorough.