Activism · Birds · House and Home · Medical Cannabis · Writing & Freelance

Let Me Introduce You to My Workspace

12 Things.jpg

This is a picture of the end table next to me right now. It’s a little chaotic, I’ll admit. It’s maybe not how I’d keep things if I were perfectly healthy. But maybe it is. I don’t really know. I’m not the most organized person in the world. Anyway, this is the current state of things.

  1. Mountain Dew goes really well with weed. (See #6.)
  2. My phone case/wallet. It’s a really ugly imitation of suede. It’s hideous, but it’s functional.
  3. My only prescription med right now, and it has nothing to do with cancer. (I know, that’s amazing, right?)
  4. The earrings Dan picked up for me three days ago at Meijer “just because”. The are cats wearing witch hats.
  5. The double-sided Sharpie I use to write postcards to voters. One side is fine point. The other side is ultra-fine point.
  6. My MMJ vape. The changes in weather got me all like “OUCH!” I try to remember to take it every day just in case it feels like shrinking my brain tumor. But some days I forget.
  7. Vitamin D capsules. The doctor wants me to keep my levels up, and I just don’t spend a whole lot of time outside.
  8. The Sibley Guide to Birds. If you look closely, you can actually see the bird feeder out there in the back yard.
  9. An almost empty basket of Halloween candy. It only contained a partial bag of treats, but still. I’ve consumed way too much sugar in the last couple of days. (See #6.)
  10. Windex electronics wipes for cleaning my laptop and cell phone screen.
  11. Mary Karr’s The Art of Memoir. I’m using it as a desk reference while I continue writing my memoir.
  12. The Sassy Bottle™. Izzy likes to be a little jerk and scratch at the furniture. Turns out she likes being sprayed with water too, though. So now it’s a game and we’ve taught her to claw the upholstery for attention. Cats, man.
Brain Tumor · Medical Cannabis

Cancer Ramblings

I’m exhausted. The kind of exhausted where I’m too tired to get up and plug in the cannabis vape pen that needs charging because I spent all that energy an hour ago making toast with peanut butter and a cup of green tea.

So I’m lying in bed composing a blog post on my phone instead of standing up, and I’ll ask Dan to charge my V2 Pro next time he comes in to check on me.

***

My platelets are low (64 at last week’s count) and I’ve been barfing again. No idea if those two things are related. Also, though I don’t really want to admit it, I’ve been basically bed ridden for a couple of weeks.

It’s not the cancer; it’s the treatment.

After my last round of chemo, I didn’t regain much strength. I mean, it’s always hard, but it seems to be getting harder. Could be the absence of the dexamethasone now. Could be the cumulative effects of the chemo treatments. Could be the shit-ass weather and extra migraines I’ve had this month.

That’s the thing about brain cancer and its treatments. So many potential causes for the add-on problems, and no sure way to identify the cause.

So you just endure.

***

Dan just plugged in the vape for me and told me goodnight. He did Boomer’s voice for him as he pulled the door closed.

“Love you too, Ma.”

“Love you too, Boom!”

“Love you too, Ma.”

(I don’t know. We’re weird. We do voiceovers for our pets. Also I sleep in the guest bedroom. It sucks. Cancer sucks.)

I asked Dan once why Boomer always said “I love you too” over and over, and he informed me that it was because Boomer had to have the last word.

Duh.

***

Anyway, barfing.

I woke up at 11:30 last night and reached for a vomit bag. The combination smell of those vinyl bags, my PB&J, and stomach acid left me heaving long after I’d blown all my chunks.

When the spasming in my stomach stopped, I brushed my teeth for the second time and walked the bag to the garage. I had called to Dan for help, but he was snoring. Hard.

Oh well, he deserves to sleep, I thought.

Unfortunately, I had to turn the hall lights on, and he stumbled in to check on me when I returned. I was sitting on the bed pouting. The dog and cat were right on Dan’s heels, and I commented that everybody had come to console me.

If there’s a bright side to puking in this house, it’s that everyone is curious. You’re never alone.

***

Regardless, I hate throwing up. It’s the worst. And I mostly hate food now too. (I’ve lost 26 pounds since quitting dexamethasone, but don’t worry. I’m still unbelievably fat for a girl who hauls 2-pound vomit bags to the garbage a couple times a week.)

***

I have no wrap-up for this post. I’m just going to try to sleep now.

Brain Tumor · Medical Cannabis

I Might Owe Dex a Very Small Apology

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.

Brain Tumor · Medical Cannabis

Shrinkage!

center for advanced medicine siteman

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….

 

Brain Tumor · Medical Cannabis

Gleostine: Round 1, Part 1

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.

Brain Tumor · Medical Cannabis

The Next Thing: A Dental Emergency

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.)

temodar.jpgMedical 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.

“OK.”

“You have to put the oxygen mask on yourself first and all that shit.”

“I know.”

“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…)

dan er

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.

Fibromyalgia · Medical Cannabis

Fibromyalgia Med Check

assorted-pills
By Ragesoss

The second week on iron supplements has not been as dramatically fabulous as the first week was.

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.