Brain Tumor · Memories

Q: What’s Worse than Having a Brain Tumor?

brainA:

A while ago I got a message from my Wahington University Physicians patient portal that they were switching over to a new system and that I should make copies of any documents in there I wanted to keep.

It took me a few weeks, but I finally got around to saving some of those documents. I put the MRI, cytology, and surgical pathology notes in a folder on my laptop, skipping over the dozens and dozens of blood lab reports.

The new files from Wash U now live with a shitload of other visit summaries and procedural notes I collected from years of trying to find out what was wrong with me.

Halfway through this monumental task, I came across the report from my very first MRI on February 2, 2017. The title of the report read: “MRI Cervical Spine and Brain With and Without Contrast”. A few lines down it said “INDICATION: Weakness, clonus, abnormal gait.”

I started crying.

***

It’s hard to put my finger on exactly why the tears started flowing, but it’s a little bit relief that someone finally figured out was wrong with me, a little bit gratitude that I was still alive, a little bit revisiting the trauma of being told I had a brain tumor, and a whole lot of emotional damage from being treated like an attention seeking liar.

***

I am two different people now. There’s before-diagnosis Emily and there’s after-diagnosis Emily, and after-diagnosis Emily is very, very protective of before-diagnosis Emily. She is frustrated that she can’t reach out and console the woman who was brushed off by doctors for years.

If I could, I’d give BDE a big hug and say, “Prepare yourself. That physician’s assistant is going to roll her eyes at you because you asked about the possibility of a seronegative condition. And the implication will be that you don’t have the proper medical training to use the word seronegative—not like she does. And when you burst into toddler-like sobs because you can no longer help your husband with household chores, she won’t get it. She will mistake your grief over your accumulating disabilities as a cry for help. ‘Are you safe at home?’ she’ll ask.”

I’d also tell her about the doctor that was going to gaslight her over her weight gain. “Cymbalta adds three, maybe five pounds at most.”

“Another will ask you to explain why you don’t walk right, even though he has the fancy tests and the training to find the answers.

Another doctor would attribute one of BDE’s abnormal test results to an issue with a device and never tell her about it. “You’ll overhear her tell the technician ‘That can’t be right’ and nothing more will be done until you can’t walk and have to be wheeled into the doctor’s office.”

“You’re going to be so angry and hurt,” I’d tell BDE. “You’re going to want to sue the worst of the people that failed you. But you’ll be too tired, too emotionally depleted, too financially strapped to even ask a lawyer if you have a case.”

***

I can’t finish this post right now, but I feel like it should end with someone shouting LISTEN TO WOMEN.

Brain Tumor

Because Sometimes SSDI Just Ain’t Enough

Yeah, I take surveys and stuff to make a little extra cash. Don’t judge me. If you want to check it out, or even sign up, you can use my referral link. Just click the image below.

Join Swagbucks!

I’ve also created an Amazon storefront of recommendations for get well gifts particularly for those with cancer or those anticipating an overnight stay in the hospital. It’s roughly based on the wonderful things people gifted me to help me get through my brain surgery, post-hospital recovery, and chemotherapy.

It’s an affiliate storefront, so I make a small commission if you buy something after visiting the link. (Your price doesn’t change though.) The hope is that through this storefront I can earn a little moolah to supplement my SSDI income. So browse the list, share and bookmark the link if you feel like helping out. I plan to make periodic additions and updates.

get well gifts for cancer patients

Emily’s Gifts to Get Well

Brain Tumor

End of Treatment Recap

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.

February 2017:

  • 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.

April 2017:

  • 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.

May 2017:

  • 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.

June 2017:

  • Try to go off the steroid dexamethasone, end up in ER.
  • Buy Obamacare.
  • See dermatologist about rash.
  • Have skin biopsied. (All clear.)

July 2017:

  • Declared allergic to my first-choice chemotherapy (Temodar).

August 2017:

  • Begin alternate chemotherapy (Gleostine) to be taken ever 6 to 8 weeks.

October 2017:

  • Learn that my tumor shrank. (Par-tay!)

November 2017:

  • Get too poor to buy Obamacare.
  • Sign up for Medicaid and SSDI.

January 2018:

  • Quit dexamethasone.
  • Begin inexplicable bout with permanent dehydration.
  • Lose weight.

February 2018:

  • Have another ER visit to replace fluids.
  • Spend four weeks bedridden.
  • Beg doctor for routine IV hydration.

March 2018:

  • 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.

April 2018:

  • Be decalred done with chemo after 6 rounds.
Brain Tumor

A few quick things before I doze off

I’ve been meaning to post for a while, but have been waiting for my mental fog to clear. I don’t think that’s going to happen any time soon. So I’m going for bullet points and brevity:

  • Chemo Round 4 is coming up December 12. The timing works out about as nicely as I could hope for, considering I don’t want to puke or sleep my way through Christmas.
  • My friend Phil over at Noiseless Chatter is holding his annual Xmas Bash! on December 8 (right before Chemo Round 4, when I will be feeling quite spry—yay!). If you’re up for laughing at some really awful holiday television episodes and cutting inappropriate jokes with the coolest people you’ve never met during the live stream chat, you’ll love it. Also, this year’s event will help me raise money for medical bills. (But you don’t have to donate to participate. Join the fun no matter what!)
  • Over Thanksgiving two really cool things happened: I got myself out of a bathtub and I descended and ascended a flight of stairs on my own. Going down the stairs was more difficult because I get dizzy and slightly nauseated looking down, but going up the stairs I realized I’m getting a lot stronger. Go me!
  • After I got news that my tumor had shrunk, I decided to celebrate by buying Christmas sheet music. Going back to the piano is not as hard as I thought it might be, and I’ve been playing for a few minutes several times a week.

That’s all I got for now.

Brain Tumor · Medical Cannabis

Shrinkage!

center for advanced medicine siteman

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….

 

Brain Tumor

Anemic Cheese Would Be an Awesome Band Name

It would. I’m just saying.

***

 

macaroni and cheese
Shirt from BumpCovers on Etsy.

Every time I think I’ve hit Fatigue Level: Ultimate™, my body surprises me. And the fatigue gets worse.

Fatigue is hard to describe and even harder for those who don’t experience it to understand.

I remember when I was a non-runner, pretending to be a runner and training for 5Ks. I’d jog for 20 minutes without walking, bend over with my hands on my knees, and huff and puff for a few seconds and think that was fatigue.

But after a minute or two I’d catch my breath and be pretty much recovered. I could climb in my Corolla and drive myself home from the park. I could make dinner, do some laundry, write a blog post or two, go to bed, and then get up, shower, and work an eight-hour day.  Repeat three or four times a week.

Not now, baby.

Right now, fatigue for me is:

  • Praying I can make it to the bed without fainting after a shower
  • Being unable to even ask Dan to grab my laptop for me, talking is too much work
  • Sleeping 12 hours at night and needing a nap midday
  • Getting winded walking from the living room to the bathroom
  • Having to sit on my rollator while waiting on the electric kettle

You know, it’s funny (in a non-humorous kind of way). I remember how excited I was to be able to stand the entire time I brushed my teeth in February. I was in the hospital awaiting tests and, ultimately, brain surgery. The doctors had just given me something like 10 mg of dexamethasone, and I felt invincible.

“I feel amazing,” I told the doc who would later slice my head open. “My sinuses are even clear.” I inhaled really deeply. “I didn’t need help with my shower. I DIDN’T HAVE TO LEAN ON THE COUNTER WHILE I BRUSHED MY TEETH THIS MORNING.”

He laughed at me, but not cruelly.

Well, now I’m back to leaning on the bathroom counter while I brush my teeth. I can’t stand upright for even two minutes. I’m frankly a little scared that I’m going to revert to pre-surgery disability and spend the rest of my life there.

But it doesn’t really help to worry about that yet, I know.

***

There are lots of things contributing to my fatigue. First of all, I’m fat. At 238 pounds, I am asking more of my muscles than I ever have in my life. I put on about 60 of those pounds in about 6 months. So I didn’t build up any gradual strength to support my own weight, like I might have if it’d taken me a year or two.

To reduce my weight, I’m weaning off the dexamethasone, but that leaves me extremely tired and achy. My weight is dropping, but oh so slowly. It’s so unfair. I’m trying to lose the pounds without the ability to exercise. How is that going to result in anything but failure?

And then there’s chemotherapy. Fucking chemo.

Last night I got my lab results from this week’s blood work. There’s nothing too scary in the numbers, but I continue to see a decline in all things red blood cell related. Basically, the shit’s making me anemic, on top of my already significant list of woes.

Anemia and fatigue go together like macaroni and cheese.

And I have at least 8 more rounds to go.