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.
Aug 3, 2017 | Brain Tumor, Medical Cannabis
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.
May 22, 2017 | Brain Tumor
Last week, I spent about 72 hours wearing pajama pants that I’d puked on.
I mean, Dan helped me spot clean them, but I was unable to change my clothes because I was so weak. That’s how bad my experience was with my first day of the maintenance Temodar (that’s the name of my oral chemo). I took my Zofran, then took the 320mg of Temodar about 30 minutes later and everything was fine.
Until it wasn’t.
Four hours after I took the pills, I tried to get myself to the bathroom. But I was surprised to find that I couldn’t even stand on my own. Dan had to get me there (and, unfortunately, had to lift me off the toilet when it was time). Then I broke out in the infamous rash, only it was worse times about a billion.
Then I tossed my cookies.
Then I couldn’t see.
Then sounds got muffled.
Then I tossed more cookies.
Then I went to bed.
It was scary, I’m not going to lie.
Dan checked on me every hour, taking my temperature. It peaked at about 100.7. (At 101.5 I have been instructed to visit the nearest ER.) We pondered going to the ER anyway, but once my temperature dropped, we figured we were out of the woods.
Plus there was still the matter of me not being strong enough to walk. I didn’t figure we could get me in the car, and there was no way in hell I was paying for an ambulance ride.
I still don’t feel right, and my oncologist and his nurse are trying to figure out what’s next. Needless to say, me and Temodar are so over.
I’m a week out, and I still can’t stand the sight or smell of food.
May 11, 2017 | Brain Tumor
I spent Monday through Wednesday this week in St. Louis for follow-up appointments. Here’s what was on the schedule:
- Monday: First MRI following completion of my radiation therapy and chemo round one.
- Tuesday: Follow-up with neurosurgeon regarding my progress recovering from brain surgery
- Wednesday: Labs and appointments with my radiation oncologist and my medical oncologist.
The MRI
The scan itself was mostly okay. I had a couple of freak-out moments, but it had nothing to do with claustrophobia or scanxiety.
It was more PTSD-like in that the unmistakable clicking and buzzing sounds of the MRI machine sent me back to the early days of diagnosis and ER life.
A couple of tears might have rolled out the corners of my eyes. In all, I spent about 45 minutes inside the machine, nearly falling asleep toward the end.
The MRI Results
My doctors were all on the same page about the results—pleased that the MRI showed the brain tumor was “stabilized.” Meaning things weren’t worse. My radiation oncologist was the most excited, telling me “Congratulations!”
I should probably be happier about this than I am, but if I’m totally honest I am not overjoyed about “stabilized.” As a patient, you kind of want to hear something like, “It’s half the size it once was. Your progress defies the odds!”
Know what I mean? I already knew the damn thing was slow-growing when they guessed I’d been carrying it around in my head for years.
I was confident it wasn’t going to double in size since February. I also thought going through two months of awful surgery, diagnostic procedures, and cancer treatment was going to get me something more than “it hasn’t gotten any bigger.” You know?
Not that I’m ungrateful. Just an overachiever, I guess.
What’s Next
I start what we’re calling my maintenance chemo schedule as soon as I get the drugs. It’s a 28-day cycle where I take my chemo pill, Temodar, in the morning for 5 consecutive days, and then I have 23 days off. Next month, I do the same thing and so on.
Even though it’s just for 5 days at a time, I’m still a little concerned about how I’m going to handle things. The dosage (320 mg) is more than double the daily dosage I took earlier. The bold, underlined, all-caps text on my patient instruction page says:
DO NOT SKIP ZOFRAN BEFORE EACH DOSE OF MAINTENANCE TEMODAR EVEN IF YOU TOLERATED TEMODAR WELL DURING RADIATION.
So I’m guessing I might still need to keep my barf bags handy.
I don’t have another MRI for two months, but I do have to see my medical oncologist again next month. From here, the doctor appointments are becoming less and less frequent. I don’t see the neurosurgeon until September or the radiation oncologist until July.
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