It’s been one week since the doctor told me I was done with chemotherapy. Here’s a recap of how I got this far. I’ll write more about what happens next and how I feel about everything in a future post.
- Complete first ever MRI of brain and cervical spine.
- Learn I have a brain tumor.
- Rush to Barnes-Jewish Hospital in St. Louis that evening.
- Have numerous tests and brain surgery to biopsy the tumor.
- Spend something like 9 days in the hospital total.
- Begin simultaneous radiation therapy and chemotherapy (Temodar) as an outpatient.
- Finish 5 1/2 weeks of radiation and chemo with relatively few side effects.
- Go back home to Urbana for a couple of weeks of rest before it’s time for 6 to 12 more monthly rounds of higher-dose chemo.
- Take the first higher dose of Temodar.
- Have severe reaction four hours later that dims my sight, muffles my hearing, turns my lips and fingers blue, makes me too weak to stand on my own, causes fever and chills and an unbearable rash, and makes me puke.
- Lose my health insurance.
- Try to go off the steroid dexamethasone, end up in ER.
- Buy Obamacare.
- See dermatologist about rash.
- Have skin biopsied. (All clear.)
- Declared allergic to my first-choice chemotherapy (Temodar).
- Begin alternate chemotherapy (Gleostine) to be taken ever 6 to 8 weeks.
- Learn that my tumor shrank. (Par-tay!)
- Get too poor to buy Obamacare.
- Sign up for Medicaid and SSDI.
- Quit dexamethasone.
- Begin inexplicable bout with permanent dehydration.
- Lose weight.
- Have another ER visit to replace fluids.
- Spend four weeks bedridden.
- Beg doctor for routine IV hydration.
- Begin routine IV fluids.
- Start feeling human again.
- Watch platelets plummet and wait impatiently to be cleared for round 6 of chemo.
- Take round 6. Finally.
- Be decalred done with chemo after 6 rounds.
Got my CBC results yesterday, and my platelets were 93. Close, but not quite the 100 we were looking for, and my doctor is a bit of a stickler for these things. That means Chemotherapy Round 6 is delayed by yet another week, pushing me about three weeks past the ideal six-week dosing.
I currently have mixed feelings about the delay. I mean, I really want to get done with all the chemo crap. This roller coaster of feeling like a steaming turd and then being throat punched by another dose of gleostine just as I’m starting to feel human again is making me cranky.
But! Going this long between doses has also given my wrecked body a little bit of a break. My appetite is better, my energy is up slightly, my neuropathy is less intense, and my dehydration is manageable with enough sports drinks and electrolyte pops. As a result, I’ve had just enough energy to accomplish a few necessary items on my to-do list—including renewing my driver’s license and getting an eye exam.
Not that I drive right now.
I’m lucky in that I don’t have seizures and my doctor has not revoked my driving privileges, but I’m not comfortable driving. I get vertigo looking left or right, and I still don’t have full range of motion when turning my head. I find the thought of getting behind the wheel really unsettling. But I thought it would be easier to keep my license current than let it lapse.
And now it’s back to trying to get a standing order for IV fluids. (I love my team at Washington University, but they’re kind of far away. Things get complicated when it’s time to coordinate the little stuff that needs to happen close to home.)
I lost another 1.4 lbs this chemo week. For a total of 14.4 since quitting dex (about a month ago).
I’ve for sure got the pounds to lose right now, but I’m concerned about sustaining this through the rest of my treatments, because I’m not in control of this loss. It’s just one more thing that’s happening to me.
This round of chemo was the worst to date, and I’m confident it’s because I didn’t have the steroid to mitigate the side effects.
One side effect of the chemo that I haven’t mentioned before (because I was only sort-of aware of it) is a crushing depression and anxiety.
Anxiety asks: What if this god-awful hell isn’t temporary like you think it is. What if you can’t get the chemo out?
And Depression answers: Of course it’s permanent now. Since when did you become such an optimist, Anxiety?
And then I’ll read about someone in my brain tumor group having their tumor 97% cut out and I’ll cry to Dan. “They can’t cut mine out. I have to keep it.”
It’s rough. Some days this thing reduces me to a five year old that doesn’t understand why she doesn’t get presents at her friend’s birthday party too.
Other days I’m like, “Want to see where they cut my head open?”
Anyway that depression goes on for the last 24 to 48 hours of chemo week, and then I wake up on the 8th morning with the cloud gone, and I’m chatty and happy and smiling. I feel sort of silly for being so emotional.
But that’s cancer. And that’s chemo.
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.
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….