Apr 17, 2018 | Brain Tumor
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.
Jan 16, 2018 | Brain Tumor
I woke up, did Head and Shoulders Knees and Toes, and washed my morning meds down with a large glass of water. Then I gulped a protein shake. And then I climbed back in bed and began writing this blog post on my phone. (That’s how you know I’m exhausted, because I hate writing on my phone.)
It was something like -2°F last I looked. A life-long fan of winter, I’ve noticed a change this season. I’ve been sick of winter since December 26. I need sunshine and warm air on my cheeks, even though two-thirds of the meds I’m on make me photosensitive and come with warnings: “avoid direct sunlight or perish.”
Or something like that.
I’m anxious in the anxiety way (as opposed to the weird “looking forward to something” way people use the word where I’m originally from). We’re heading to St. Louis this afternoon for a day full of shopping and sightseeing tomorrow.
Did I say sightseeing? I meant tests and doctors. Silly me. Starting at 7:45, which means leaving the folks’ house an hour early to drive into the city and park and allow me time to hobble to the hospital MRIs. (The Center for Advanced Medicine MRIs are closer, but were all booked up. Ugh.)
Anyway, about my anxiety. I haven’t been doing so well lately. A lot of time in bed. A lot.
I’m finally off the dexamethasone, and have been for two weeks, but I can barely walk I’m so weak. And the pinchy pain that keeps nagging me? I think it’s swollen lymph nodes, based on location. My guess for cause would be rebound swelling after being on the dex for so long and then quitting. But honestly I have no fucking idea what the cause is. I know I hurt. I know I’m tired.
And that brings me to the source of my anxiety: I don’t have good things to tell the doctor. See, chronically sick people dread telling their doctors that things aren’t good or improving or at least not getting worse.
Spending years in the fucked up US medical system with a horrible doctor or three conditions patients that it’s on us to feel better whether we do or not. It’s so traumatizing that, even when the bad doctors have all been fired and there are only good ones left, we still feel responsible for not getting better.
“But Emily, you have a brain tumor. Your doctors totally get it,” is something I sometimes tell myself. But I suspect it’s something like a veteran saying to herself, “It’s OK. You’re home now. Fireworks are fine.”
Oct 27, 2017 | Brain Tumor, Medical Cannabis
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….
Sep 8, 2017 | Brain Tumor
I had follow-up appointments with all of my brain tumor doctors earlier this week at Siteman Cancer Center. Posting a bare-bones update so I can keep people informed but not expend too much energy.
I’m tired, guys.
I got an all-clear as far as recovery from February’s brain biospy. I’m still frustrated with my progress, because I want to be perfect. But doctor is very happy with my progress and says I don’t have to go back to him unless something comes up. As a part of my medical team, he will continue to monitor my periodic MRIs.
The second dose of chemo (gleostine) will be higher than the first. Since I had the allergy to Temodar, he didn’t want to start me off with too high a dose of the new chemo and cause me additional problems. Things went well and my blood counts were decent, so my next round will be higher. I have the pills in-hand, but don’t plan to take them until Monday.
He’s given me the go-ahead to try tapering off of dexamethasone again with some flexibility to do the taper however my body can handle it. His only admonition was to go back on it immediately if I had any problems. No worries there. I’m not keen on ER visits.
I asked him about getting my flu shot this year, and he gave me his blessing with a caveat: get the shot on week 5 of my chemo cycle when my counts are the highest and my body is at its toughest.
*** Special Request: If you’re able, get your flu shot. Yes, even if you feel like you don’t need it. You are helping to protect people like me with compromised immune systems stay as healthy as possible. ***
He only needs to see me every other MRI, assuming my scans continue to look good.
Jul 27, 2017 | Brain Tumor
True story: There’s a medium-security federal prison on I-70 in Greenville, Illinois. You can see it from Interstate 70. You can also see a sign situated in front of it that reads “If you lived in Greenville, you’d be home by now.”
“Oh my God, Dan. Did you see that?” I asked through my laughter. “Who puts a ‘you’d be home by now’ sign in front of a federal prison?”
“Why, the great citizens of Greenville, Illinois, I do reckon.”
“It makes me wonder if someone has the best sense of humor ever or if someone is uncommonly oblivious.” And then I paused reflectively for a second. “Doesn’t matter I guess. I can’t decide which would be funnier.”
We were on our way to St. Louis to see my doctor about my brain tumor, a Grade 2 astrocytoma nestled all up in my brain stem.
I had a full day of doctor things at Barnes-Jewish Hospital. It started off with an MRI. Then I had labs done to check my counts and make sure I was in good shape to start back up on chemotherapy, and then I had a visit with my neuro-oncologist.
The nurse who installed my IV for the MRI contrast immediately made my day. “Are you going to have other labs at the 7th floor location? If so, I can leave this IV in, and the nurses there can use it to draw blood. One stick today.”
“YASSSSSS!” I cheered. I’m a hard stick now that I’m a cancer patient. Like, my-veins-are-sentient-and-burrow-into-my-bone-marrow-at-the-scent-of-an-alcohol-swab kind of hard stick.
When it was time for the draw, the IV wouldn’t give up the goods though. In all, they stuck me five times yesterday. And that just sort of scratches the surface of the list of Things That Were Hard About Yesterday™.
My MRI appointment didn’t show up in my patient portal thingy, so I went to the wrong location. We had to walk to another zip code to get to the right place. And the sign-in process there was senseless. Requiring bouncing around on three different floors. I don’t know if y’all remember this, but walking is hard for me.
I managed to get it done without a wheelchair because I’m stubborn and had my rollator. (My legs cramped up all night long. Today I can hardly stand up and there’s a spot on my to-do list in all caps “APPLY MAGNESIUM LOTION AND SIT IN YOUR DAMN RECLINER ALL DAY.”)
The MRI itself was the best one yet. “Imagine” played on the headphones while the magnets jiggled the table and lulled me into a relaxing sleep. When I wasn’t dozing in the Skinny Tube of Loud and Screechy Noises, I was able to keep my eyes open. I am officially over all MRI fears.
Die in a tire fire, claustrophobia.
Despite an extremely draining six outpatient hours at the hospital, I feel good about the outcome. The MRI told the doctors that my brain tumor is still stable—a comfort considering any active treatments were postponed while we waited to figure out what was happening with the Temodar.
According to the nurse, my blood counts were “beautiful” following my treatment hiatus, meaning I’m in a good spot to resume treatment.
I don’t have to go back on the Temodar!
My doctor has prescribed a new chemotherapy pill, and this is one of those rare cases where “the evil that you know is better than the evil that you don’t know” just does not apply.
When my doctor said, “We’re very concerned about what happened to you on the Temodar,” I was so relieved.
My doctors are still listening to me and they are concerned about my quality of life. They care about me as a whole human person. I’m not just a tumor incubator with the potential to land them on the cover of Brain Tumor Slayers Monthly.
So here’s the plan:
- My new chemotherapy is still a pill that I can take at home. No infusions.
- The name of the medicine is gleostine (also called lomustine, Ceenu).
- I take it for one day and have six weeks off, as opposed to the five-day regimen for Temodar.
- Fatigue seems to be a certainty as far as side effects go.
- One dose of chemotherapy costs $110. (That’s in addition to my monthly premium of $350 for health insurance, so here’s where I plug my YouCaring fundraiser page again.)
- I will resume weekly labs to make sure my blood counts are good, or at least passable, but I can do them here in Urbana.
- My doctor gave me a new script for PT/OT. I have to check with insurance to see if I can even afford it. But I’m hoping it will be possible and that it will help me get over some pain and numbness that’s overtaking the left side of my body lately.
- My dexamethasone dosage is being reduced from 2 mg daily to 1 mg daily. (Fingers crossed, I can stay active but a little less hungry on this dosage. I gained another 10 pounds since my last doc visit.)