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.

Fibromyalgia · Medical Cannabis

Pot, Protein, Pumpkins

halloween-carved-pumpkinI’m a little better now than I was at the end of last week, having had the weekend to do absolutely nothing. I took one-quarter of a cannabis gummy on Friday and again on Saturday and slept nearly 12 hours each night.

I know that the goal is to sleep just 8 or 9 hours every night and sleep well every night, but I can’t do that unless medicated. And if I’m medicated, I am so sleepy I can’t think straight. And if I can’t think straight, I can’t work.

So, at least for now, weekdays equal suffering and weekends equal sleeping.

***

Both my primary doctor and The Fibro Manual have suggested that I try to increase the amount of protein in my diet. Something about cells burning energy inefficiently in patients with fibromyalgia.

Blah, blah, mitochondria. Blah, blah, don’t skip meals.

I’m working on swapping some of my carbohydrate calories for protein calories…incrementally. Since I’ve been logging what I eat in My Fitness Pal for more than a year, I can quantify this change. Yay, numbers! Yay, data!

Looking back at my nutritional reports, it was pretty common for me to get less than 10% of my daily calories from protein. My first goal is to bump that to a consistent 15%, or about 62g of protein, daily.

I’m a meat eater, but not an exuberant one. Most of the additional protein comes from non-meat sources. I mix in a little protein powder with my Greek yogurt. Opt for the protein-packed cereal. Ask Dan to make pasta with Barilla’s high-protein penne and throw in some cannellini beans.

Long-term, I’d like to get to 25% protein. That may require giving up carb-heavy Gatorade, and I’m just not ready to do that yet. (God knows I’m not giving up dessert. I know my limits.) Gatorade’s one of those things I started drinking because one of my medicines was so dehydrating, and it’s been a huge help for that and more.

Baby steps though.

***

Happy Halloween! We didn’t carve a pumpkin this year (the one above is from 2010), and I’m not feeling up to answering the door, but I did manage to keep one Halloween tradition alive this year—ordering a custom Christmas ornament on Etsy!

Fibromyalgia · Medical Cannabis

The First Time I Got High

medical-cannabis-gummiesSo far, I’ve received three questions about medical cannabis via my contact form. All three were variations on the same theme: Does medical marijuana make you high? I’m answering this from a personal perspective, just to be clear. What follows is NOT an answer to Does medical marijuana make one high? or Will medical marijuana make me high?

TL;DR answer: Sometimes.

The first three times I took medical cannabis, I used THC-infused Indica gummies. Each time I took one half of a gummy with food before bed, and I did not get high. The fourth time I took half a gummy on an empty stomach while ill (and probably pretty dehydrated) and I got high as fuck.

***

A short time ago, Dan and I traveled to Indiana for a funeral. I was sad, anxious about traveling with chronic pain and IBS, and (as usual) ignoring my body’s attempts to warn me to be kind to myself.

We were on the road at dinner time, which meant stopping for a bite along the way. I had a baked potato and a vanilla Frosty from Wendy’s. Maybe not the healthiest meal, nutritionally speaking. But at the time all I was hoping for was “not spicy” and “hopefully not tainted.”

A baked potato and vanilla shake seemed like my best options on a strip of road where burgers, onion rings, tacos, roast beef, chili, fried chicken, and 12-hour-old wilted salads were my other options.

We met up with family at the funeral home. I hugged my parents and extended family and took a seat at the back of the room, as close to the restroom as possible while still being present for the service.

Aside from my usual aches and pains and moderate vertigo when standing up, I made it through the service without incident. I hobbled down a few stairs to the parking lot, and we left for home.

The cramping didn’t start until we had been on the road home for about an hour. “Dan, you are officially being warned. Take the next exit where I can access a public restroom.” I clutched my gut and loosened my seat belt.

I prayed to no one in particular that I would make it. “Also, pull the car right up to the fucking door please.”

Dan obliged. I made it. As far as anyone else knew, I was just a regular traveler taking a break to answer the gentle (ha!) calls of nature.

(Funny story: when my IBS was at its absolute worst, I’d run to the bathroom at home, slam the door shut, and sing “Looks like we made it…” at the top of my lungs. A signal to Dan that things were going to be OK—not good, but OK—and a reminder to myself to laugh.)

We were back on the interstate. Home was less than an hour away. I sighed, relieved.

***

Three blocks from our house, I cried out in pain. The cramps were back. I took rhythmic breaths through clenched teeth. “I need to get home. Now.”

Dan gave the car a little more gas. We were doing 45 mph on a 25 mph street, coming up on a red light.

Turn green. Turn green. Turn green. FUCKING TURN GREEN ALREADY.

“Dammit!” I yelled as Dan brought the car to a halt at the intersection. He was doing the best he could.

Hee hee. Hoo Hoo. Hee hee. Hoo hoo.

We were moving again, but there was a four-way stop a few hundred feet in front of us. Cars were queued, waiting for their turn. There was no way Dan could just roll through this one.

“I’m not going to make it,” I said.

We were literally a block from home, and I started crying.

***

I showered and cleaned up on my own. The only pair of dress pants I owned went in a garbage bag. I put on my pajamas and crawled into bed. Everything hurt, I was deeply embarrassed, and I was emotionally spent. I reached for the medical marijuana, knowing it would dull the sharp edges of my pain, calm my gut, and help me sleep—just like the first three times I had taken it.

***

Thirty minutes later I reached for the glass of water on the table beside me. “Why is my arm doing that?” I giggled.

“Doing what?” Dan asked.

“Look. I have a Go-Go-Gadget arm. It’s reaching too far and I can’t pick up the glass.”

“Oh my god. You are so stoned right now.”

***

“That is so cool,” I said. “When I close my eyes the things I think in my brain are cartoons!”

***

“What’s so funny now?” Dan asked.

“There are strings around my lips and in my cheeks. Someone is pulling them! I can’t make my face unsmile! Turn on Bob Ross!”

***

“Dan? I’m having really intense deja vu. Also, how many Modern Family episodes are they showing tonight? Jesus.”

“This is still the first one.”

***

“I know why hippies are hippies. If we give mean people weed, they can love everyone too. Like I do.”

***

“Take a look! It’s in a book! A reading rainboooooooww!”

***

“Dan?”

“Yeah?”

“Why can’t everyone who’s sick have weed? I want everyone to have weed. I love weed.”

“Maybe one day.”

“Dan?”

“Yeah, Love?”

“Nothing hurts.”


NOTE: I have chosen not to take medical cannabis while I try to evaluate the effectiveness of the gabapentin the doctor just put me on. I still have a few posts in the queue, however.

Fibromyalgia · Medical Cannabis

Got My Illinois Medical Cannabis Card

illinois-medical-cannabis-cardIt’s here! My Illinois medical marijuana card is here!

I went to the Medical Cannabis Outreach mobile clinic on August 13, 2016 for help with my application and fingerprinting, and I received my card in the mail on September 26, 2016.

That’s 44 days from start to finish.

I am relieved that marijuana is now available to me, particularly after fighting through some very difficult days in the past couple of weeks.

The plan is to write about my experiences, which promise to be enlightening. You see, not only will I be able to write about them from a patient perspective, but also as a new user.

That’s right, folks. Aside from a couple of contact highs in college, I have absolutely no experience with recreational marijuana. That’s because when I was growing up about all you could do was smoke the stuff, and that didn’t appeal to me. (For better or worse, no one ever offered me a brownie.)

Also, I had a very real fear of Satan, demon possession, jail and criminal records. So, yeah.

Anyway, my hope is that writing about using medical marijuana to treat my fibromyalgia will accomplish two things: 1.) opening a patient-to-patient dialogue that helps me and others discover what works, and 2.) showing non-patients on the fence about medical marijuana that it’s not something to fear.

Please feel free to use the comments section of any post or my contact form to ask questions along the way.

UPDATE: It wasn’t fibromyalgia. It’s a brain tumor.

 

Fibromyalgia · Medical Cannabis

Update: My Medical Cannabis Card Fundraising Campaign

screen-shot-medical-cannabis-fundraiserI received a $40 donation for my medical cannabis card application, and that donation got me to 100% of my fundraising goal. Here’s my Go Fund Me campaign update:

I have great news to report! This weekend I received the donation that got me to 100% of my fundraising goal.

I am excited and so very thankful to everyone that contributed, shared posts on social media, and offered words of encouragement.

When I first set up this campaign, I thought, “It’d sure would be helpful if I raised a couple hundred dollars.” I didn’t have any expectation that I would raise the full $685.

So much about my prolonged illness has felt like a fight — a fight with doctors, a fight with bill collectors, a fight with pain and insomnia, a fight with bad prescriptions, a fight to get out of bed in the morning, a fight against myself, a fight against the bureaucracy of the State of Illinois.

This $685 battle was one a bunch of other awesome people fought for me.

THANK YOU!

It might be a while before I have my card and am able to participate in the Illinois medical cannabis program. If you’d like to follow along with the rest of my progress, please connect with me on my blog:
http://www.emilysuess.com

The Perfectly Posh fundraiser continues until September 25, and proceeds will help me pay for dispensary purchases. (As you probably know, medical marijuana is not yet covered by insurance.) You can join the Facebook event. Joiningg the online event doesn’t obligate you to make a purchase, by the way. You can just lurk and check out the products that are available if you like.
https://www.facebook.com/events/885633958204043/

Thanks again to all of you.

Peace, love, medical dope!
Emily

Unfortunately, Sunday was a high pain day, which means that as a matter of course it was a low mental health day. So I don’t have energy to write much more right now. Stay tuned, though, because later in the week I hope to write about some things I learned from the MedX conference livestream.