Brain Tumor

Healthcare for My Enemies

Chances are if you’re friends with me on Facebook, you saw some drama go down on my page this weekend.

It started with me posting a few updates about my husband being denied the meds he needs. That post led to a woman telling me to “shut it.”

It was her opinion that because I wasn’t working, I had no justification for lamenting our situation (which is that I have brain cancer and my caregiver has a chronic illness that is going untreated, not because the condition is untreatable, but because our insurance–Medicaid–claims there is “insufficient medical necessity” for the medicine prescribed by his doctor).

That he doesn’t need the Humira for his psoriatic arthritis is an outright lie, however. Just look at this. Look. At. It.

Anyway, in discussing that we have been on Medicaid and SSDI openly online, countless trolls and bots have suggested, like this woman, that patients like me don’t deserve the health care we do get and have no right to complain about the health care we don’t get.

‘Mer’ka. Yeah!

This weekend was the first time, though, that someone I knew had told me that I specifically am unworthy of care or of demanding a certain standard of coverage for my husband.

***

At first I was seething with rage. Today that rage has given way to hurt and a complete disillusionment in all of humanity.

I spent two hours at the hospital getting IV fluids this afternoon. Alone with my thoughts for all of that time, I just kept wondering how many other people thought I shouldn’t be allowed to have the infusion. It was a depressing couple of hours for sure, and I haven’t yet completely pulled myself out of the funk. (I will in my own time, don’t worry.)

I used to think that people who cried “freeloader!” just couldn’t empathize with a nameless, faceless group of people they’d been told to hate. That if they knew someone who was sick, they would change their tune. Step up and demand humanity from their family, friends, neighbors, and political representatives.

Good night was I ever wrong.

***

When a friend of mine suggested I come up with something nice to say about this woman to help me shake off the dust and dirt, all I could think of was this:

“Well, if you’re looking for a friend who doesn’t coddle you with positivity just because you have brain cancer, Brenda’s* definitely your gal.”

I just want to say that everyone deserves good, affordable health care. Even Brenda. And words can’t express how begrudgingly I say that.

* Not her real name.

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

Emily’s Cancer Calendar

This is the calendar that sits on my FitDesk. I use it to track some of the day-to-day things I accomplish, because I need to remind myself that having cancer is a job. A hard one even.

The numbers inside the circles indicate how many minutes I spent actually riding the FitDesk that day. The stickers (yay stickers!) are for the days I ride, even if it’s a day that I can only muster five minutes. At the end of the month I total my exercise minutes and check the odometer for my total mileage. I also mark down the days I leave the house for doctor appointments, labs, fluids, etc. I note the days I take chemo, and what round it is.

I put a giant X on days I feel like shit and just can’t. And as I draw the X, I remind myself that rest is a to-do item as well. One thing that’s heartening is that I have fewer marked on the month of March than I do February.

 

Brain Tumor

The Joy of Itching

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.

House and Home

Good Reads 2018: January – March

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Artemis | Andy Weir

This book was written by the guy who wrote The Martian and performed by Rosario Dawson. (I love her.) It’s about a heist that takes place on the moon. It’s witty and science-y.

Promise Me, Dad | Joe Biden

This was a hard read for me, seeing how the book was equal parts family story and political memoir. If you don’t already know, Joe’s son died of a brain tumor. That made this book a bit of a traumatic read for me. But it was also comforting. I’m a bigger fan of Joe Biden having read this book, and I already thought pretty highly of him.

Artemis Fowl | Eoin Colfer

Just a coincidence that Artemis appears in the title of this too. It’s what I’d call YA Fantasy and it was a fun distraction. I listened to this (and other titles) on Audible during chemo week and during my two-hour visits to Expanded Care for my IV fluids. The guy reading this book was fantastic, a true voice actor.

Coming Clean | Kimberly Rae Miller

This is the memoir of a woman whose parents are hoarders. You’ll laugh; you’ll cry. And you’ll be reminded that the people on that TLC show are real people and, I believe, understand them just a little bit better. I loved this book, and I think Kimberly Rae Miller is a gem.

A Wrinkle in Time | Madeleine L’Engle

Somehow I had managed to never hear of this book until I was 38 and it was being released as a Disney movie. It was decent, but I think I would have enjoyed it immensely more if I was 12.

What She Knew | Gilly MacMillan

I also listened to this book on Audible. For a book about a high-profile kidnapping, it was a long slog. I finished listening more out of duty than enjoyment. In fact, I ended up changing the playback speed to 2x real time just to get it over with. Perhaps it would have been more enjoyable as a read instead of a listen.

Fire and Fury: Inside the Trump White House | Michael Wolf

I. Had. To. If you don’t know, I’m a political junkie and I think Trump’s a nincompoop.

The Good Samaritan | John Marrs

Read this one on my Kindle before my headaches got to be a little too frequent, and it was good. It’s about a woman who works at a suicide hotline looking for candidates to encourage to commit suicide. I’d give it four stars and a trigger warning.

Post contains Amazon affiliate links.

 

Brain Tumor

How Tired I Am

Today I smell like a bar of Zest soap from the 1980s. Thanks to chemo, I’m too weak and dizzy to take my usual shower, so I mopped myself up with those bathing cloths I brought home from the hospital over a year ago. They smell like old school soap.

It’s not my first choice in fragrance, but it could be worse, right? As it stands if I paired this scent with a hint of Listerine, I might convince myself I’m 8 years old again, sitting on my Grampa’s lap.

***

If I remember right, he sat in a fake leather recliner that made so much noise when you sat in it. The end of each arm was repaired with duct tape. And the shade of the floor lamp beside the chair still had the plastic cover on it. There was a fake spider nestled between the shade and the cellophane. I don’t know how it got there; I never asked.

And an ink pen was wedged in near some decorative flourishes below the bulb and switch. (When I was little, I thought the lamp had a built-in pen holder.) Sometimes I’d see Grampa use the pen to write. Usually he’d stick it in his ear to scratch an itch.

***

Anyway, I parked my rollator at the sink so I could sit to wash my face and brush my teeth. That’s how tired I am today.

Brain Tumor

Another Round of Chemo Underway

My platelets were good enough this week (113) that I was cleared to take round 6 of chemo last night at bedtime.

I don’t feel great this morning, but I am relieved to have finally reached the halfway point of my planned treatments.

Dan went to run some errands a little bit ago and kissed my forehead before leaving. Then he scrunched up his face and got out the thermometer, pointing it at my forehead. 100.1.

Not worrisome, but it has to be watched.

Chemo always raises my temperature. That’s not listed as a side effect, but it happens reliably every time I take it.

So far this morning I have only been out of bed for bathroom breaks. I actually have less pain today than yesterday, but I am much weaker and lacking in energy. It would all be worse I’m sure, if it hadn’t been for the IV fluids I received on Monday. (It took about three weeks to get it worked out, but I finally have a standing order for fluids. Yay!)