Aug 23, 2018 | Brain Tumor
The picture on the right is from one year ago today: August 23, 2017. It popped up in my Facebook memories, and I was like Whoa! I am not just 45 pounds heavier, I’m also swollen from taking steroids. (Dexamethasone is a wicked drug.) The picture on the left is one I took this morning, because I wanted a side-by-side comparison.
I don’t have a lot to say about it other than I am fascinated.
Feb 25, 2018 | Brain Tumor, Medical Cannabis
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.
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.
Jan 27, 2018 | Brain Tumor, Medical Cannabis
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.
Jan 26, 2018 | Brain Tumor
Last month when I completed chemo round 4, I did it at Mom & Dad’s to give Dan a couple of weeks off from caregiving.
It was the first chemo week were I had zero GI distress on the Wednesday following taking Gleostine, so naturally I was obsessed with why that time was different.
“Mom buys different yogurt,” I told Dan. “I was reading the labels and it has different active cultures in it. Buy me that Jamie Lee Curtis junk next time.”
When you’re on chemo you get lots of people telling you how much you need to eat yogurt, but they don’t really bother to say which kind. I switched to Activia at home. No GI distress for round 5 either.
I have at least one thing to celebrate.
The rest of round 5 has been difficult. Being off the dexamethasone is a two-edged sword. I’m losing weight, but my appetite is crap. Not eating plus not having the steroid is making me even more weak and tired. Something I thought was a physical impossibility.
Food is mostly gross right now, and there’s little rhyme or reason to what I can stomach and what I can’t. Generally, the warmer the food, the more it smells, the more it makes me want to hurl.
But eating cold food in the winter gets old fast.
And most of the time I just feel too tired to eat. Like moving my jaw to chew is just too much to ask of myself.
Also the word “chew” made me feel sick just now.
*Puts hand over mouth*
I should be coming to the end of the worst part of Chemo Week #5 soon though. And I managed to venture out into the back yard today for a few minutes.
It was a little too windy to not be cold, but the fresh air was good for me. I’m in need of an early Spring. If you see that groundhog, pick him up by the scruff and threaten to replace him with a marmot unless he does the right fucking thing.
Jan 5, 2018 | Brain Tumor
Remember how I’m coming off the dexamethasone? Here’s an update I posted to Facebook yesterday:
As of 8:36 am, I was 96 hours dexamethasone free. But as morning turned into noon, I started feeling sick to my stomach. (I’ve been down this road before, so I had a small lunch of yogurt and 2 cuties and popped a 1/4 mg of dex to stave off the vomiting. You’re supposed to take dex with food.)
“I don’t want to start horking and land in the ER again like I did in June,” I told Dan.
Four minutes later my entire head was in a vomit bag.
So here’s the question: Did I or didn’t I take dex today? Or maybe it’s Schrödinger’s Dex?
While the vomiting has been quelled by a medical cannabis patch, the nausea is lingering. My appetite is at about 6%, but that’s OK for now. I still have a ton of steroid weight to lose. So far I’ve made do with a bowl of Rice Chex, some lactose-free, high-protein milk, and eight Wheat Thins.
I’m going to try real hard to eat some chicken nuggets tonight. Salt and protein have always been my way out of Pukelandia.
Aside from the gross stuff, I’m having major muscle fatigue and soreness. My quads are screaming at me like I’ve been marathon training without taking any rest days, despite the fact I’ve just been in bed whining since Tuesday.
I’m also having some issues with rebound swelling and double vision. Both things to keep an eye on, because my brain could swell, too, without the dex—and that would be bad. And require me to go back on the dex. And we don’t want that.
Dear god, we do not want that.