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.
I couldn’t sleep last night, because my legs were itchy and tingly. They jump and jerk involuntarily when the neuropathy gets bad. And I toss and turn trying desperately to get them to chill out. What I feel is a lot like restless leg syndrome (RLS), except the severity of the sensations depend on where I am in the chemotherapy cycle. I’m smack dab in the middle of the worst part, having taken Round 6 on Tuesday night.
Sometimes I put large ice packs on my legs and that helps. But I was too cold for that last night. So at 2:00 in the morning, I got out of bed and jumped on my FitDesk exercise bike. I rode for 20 minutes—which is a long-ass time for me in the middle of treatments—until the uncontrollable urge to move around and scratch my legs subsided.
By some miracle I was able to fall asleep before the itching and prickling returned. But here I am this Easter morning wondering what would happen to me if I just biked all day. As a chronic pain aficionado, I’m here to tell you that chronic itching is infinitely worse than…well, anything. Chronic pain might depress you, but chronic itching will make you lose your bloody mind.
Anyway, that’s just the legs. They’re the worst, by far, but I itch everywhere. I scratch my face. My head. My neck. My arms. When I reach peak itching, it feels like there are bugs crawling on my forehead and hairs tickling my face. It’s a real joy, let me tell ya.
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 went to bed last night feeling decent; I woke up this morning feeling completely dehydrated. Then I dry heaved into a vomit bag until I could finally get a Pedialyte Pop down.
This is becoming my pattern:
- Drink fluids all damn day, including 20 oz. of Gatorade, and a eat a Pedialyte Pop right before bed.
- Dehydrate while I’m sleeping.
- Wake up dizzy and thirsty.
- Dry heave.
- Eat another Pedialyte Pop.
The big mystery is why do I keep drying out over night? I have a humidifier, and humidity in the room is reading 60%. I have water and something with electrolytes before bed every night. I drink between 80 and 100 ounces of fluids in a typical day. And it’s been 7—almost 8—weeks since my last chemo round. (I’d anticipate problems in the first week after taking the Gleostine.)
I’m trying to get through the weekend without a trip to the ER, because after next week I’ll be fixed up with a standing order. And I can get IV fluids whenever I need them without taking up a bed in the ER or accruing thousands more in medical bills.
If I can just make it a couple more days.
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.