VIDEO: Life with a Brain Tumor: Emily Gets an MRI

VIDEO: Life with a Brain Tumor: Emily Gets an MRI

It’s snowing in Urbana today.  Nothing too serious, but just enough to be ridiculous.

Earlier this week, I had a check up with the fine folks at Siteman Cancer Center. I made this little video about the experience. If you’re not a subscriber to my YouTube channel yet, please subscribe!

[youtube https://www.youtube.com/watch?v=Uabz0J9ws-U]

Our Rolling Death Trap

Our Rolling Death Trap

What day was it? Thursday, I think. Whatever day was National Taco Day. I put on my taco socks and told Dan to take me to Taco Bell for lunch.

Before we left the house, I double-checked that my auto insurance cards were up to date. See, the last time we went to Taco Bell, Dan got pulled over on the way home for speeding. And I didn’t have my phone or my wallet with me and couldn’t prove we had insurance on the Corolla.

The officer wrote Dan a ticket for speeding, but not for failing to show proof of insurance. He could’ve nailed us for both, and god only knows how big the fine would’ve been.

Anyway, even with the officer giving us a break, that freaking trip to get cheap-ass “tacos” cost us $147. So now every time I even think about Taco Bell, I wonder if my auto insurance papers are tucked away in the glove box.

Back to this past Thursday, though. All the insurance stuff was fine (I double checked before we pulled out of the driveway) so Dan drove me to Taco Bell for one of those ridiculous $5 box deals, which I would share with him. This time on the way home, the car started stalling at lights. It sputtered and shook as we rolled down a pretty busy street.

“Gah.” Dan tensed up. He threw it in neutral at every stop and had to give it extra gas as he put it back in drive just to get it rolling when it was time to go again. “Just get us home,” he patted the dash. “At least get us off this busy road.” He turned the hazards on, and cars whizzed past us in the left lane.

“Let’s never go to Taco Bell ever again,” I said. “Once is a fluke, twice is a fucking curse. Also, I’m too young to die.”

“Deal. Taco Bell can suck it.”

We did manage to get the Corolla back home and in the garage before it completely gave up the ghost. Dan lifted the hood, checked the oil, and inspected the battery we’d just replaced. “Whatever is wrong with it isn’t obvious to me,” Dan said. Lowering the hood to almost closed and then letting it drop the rest of the way with a loud thud.

We tried to eat our tacos while we watched GOP senators morph into rape apologists on live TV, only taking a few bites before pushing the taco remains away. We were mad about Kavanaugh. Our nerves were shot from the scary ride home in a failing car. And we were stressing over the financial implications. We didn’t even have the $113 to shell out for the battery last week. No telling how much more it would cost to get the thing running again.

Our appetites were gone.

Friday morning I called roadside assistance and had the car towed to the shop.  For the first time since we’d been forced to downgrade to a single-car home, we were without a car. We had errands to do, so we walked to the bodega-ish shop a couple of blocks away to get Dan’s smokes, and then I ordered groceries from Shipt for the first time ever.

I’m going to long-story-short this sucker, because I’m almost to 500 words already.

A friend of mine from the glorious interwebs, saw my distressed tweets about the car troubles on Twitter and DMed me. She said not to worry about the car, she would help. And she did. She called the mechanic and paid upfront for the repairs. No only did she have them fix what was preventing the car from running (bad spark plugs and a shot number three ignition coil) but she got us new tires too. (The tread rating on two of them was in the red and the mechanic previously given us the concerned parent lecture about riding around with bald tires while we entertained him with stories about blood and turnips.) Not long after that, a second friend offered to cover the expenses. I was speechless at the generosity.

Over the weekend I was emotionally all over the place. On the one hand, people were wonderful and kind and full of goodwill. And on the other hand, people were belittling one of the bravest women my eyes ever beheld while making excuses for a power-hungry, entitled, beer-swilling basket case. I couldn’t reel in my feelings there for a while.

Now that the dust has settled, I’m writing postcards to encourage people to vote. These midterms are so incredibly important. And I’m looking at my next MRI and checkup with the oncologist on the calendar with a little less angst. It’s coming up in about three weeks, and now, thanks to the kindness of someone I’ve never even met in real life, we’re all set to make the 175-mile trip to Siteman Cancer Center in St. Louis in a car that isn’t a rolling death trap.

Just the Facts

Repost from Facebook in case you don’t get updates there:

1. We are home from another 6-week checkup at Siteman Cancer Center in St. Louis.

2. My platelets are up from 51 last week to 64 this week. So they’re finally climbing again instead of tanking.

3. My platelet count has to reach 100 before I can take next my chemo round, but the oncologist sent me home with the pills and told me they’ll call me when my weekly labs reach the magic number. In the meantime I just wait.

4. If my platelets had dropped under 50 at any point, they’d have lowered my chemo dose. The nurse chuckled when I told her they were 51 last week. (It’s like I’m getting the highest possible dose without going over.)

5. The oncologist wants me to get with my primary doctor here in Urbana to set up a standing order for IV fluids. That way I can get them before it becomes an ER situation and keep beds open for people who need more than a couple bags of saline.

That’s all I got for now.

Emily Answers Your Brain Tumor Related FAQs

Emily Answers Your Brain Tumor Related FAQs

recovery

OMG! I just heard. How are you?

The answer to this one changes every 5 to 30 seconds. You know that graphic about recovery not being a straight line? That is applicable to just about everything in life, and medical procedures are no exception. I’m glad to report that after 71 days away, I am at home in Urbana. The overall trend is toward “better and better” but I have my days where it seems like everything sucks and I’m taking steps backward. I’m not shy about griping during those moments. I promise to let you know when things are bad and I need a little cheerleading.

Are you done with radiation and chemotherapy?

Sort of? The radiation is done unless future MRIs indicate there’s a need to zap the tumor again. Chemotherapy and I are, as Ross might say, on a break. There will be more Temodar—brain cancer chemotherapy in convenient pill form—in my future, but it will only be once a week every month. (One week on, three weeks off, lather, rinse, repeat.)

I imagine that my body will tolerate that schedule much better than the initial chemotherapy regimen, which was every freaking day for five weeks. Right now, doctors are saying to expect to do the one-week-a-month plan for 6 to 12 more months. Actual duration will depend on how the tumor responds and how the rest of my body tolerates continued treatments. You know, my mileage may vary and stuff.

I want to help. What can I do?

  • Tell me jokes. Laughter is a great distraction.
  • Carry on about your business like things are normal. When someone tweets how miserable their allergies are making them feel, I am not thinking “Yeah, but I have cancer. Count your blessings.” Rather I am thinking, “Better you than me, sucker!”
  • Donate to my YouCaring fundraiser. But only if you can. My medical bills are piling up, and as of today (4/24/17) I’m preparing for an appeals battle with my health insurance provider. They have denied a claim that exceeds $100,000 for the genetic testing that determined the best treatment course for my tumor. I’m not adjusting my fundraising goal, however, until I know for sure I’ve been screwed. I could win the appeal. Right?

What about the Fibromylagia diagnosis?

It’s still on my medical records as a thing. But my opinion, knowing what I know now, is that the rheumatologist who diagnosed me with it in late 2014 was lazy and just fucking WRONG. My thoughts on this topic are pretty complex, however, and I plan to do a more in-depth post of my experience. For now, just know that if you troll or harass anyone diagnosed with fibro I will cut you. It’s real.

You went to St. Louis for treatment?

Yes, at the recommendation of my primary physician (I will praise her more in a future post) I went to Barnes-Jewish Hospital for formal diagnosis and treatment. The hospital campus includes Washington University Physicians and Siteman Cancer Center. And every one of the people I was in contact with there was absolutely phenomenal—ER admissions staff, nurses, doctors, transport staff, nurse assistants, more doctors, residents, interns, food and nutrition employees, housekeeping, valet staff, radiation oncology techs, MRI techs, CT techs. I am seriously getting a little teary thinking about how well I was treated and how much confidence I had in the people taking care of me. I don’t know any of their salaries, but I know that none of them are making what they are worth.

Emily Live on Facebook

Emily Live on Facebook

On April 12, following my last radiation treatment, I went live on Facebook so that everyone who had been supporting me could watch me ring the final treatment bell in the radiation oncology waiting room at Siteman Cancer Center.

It was freaking emotional, man. The video ends abruptly because I was flooded with emotions and just started crying.

The video of this celebration is public on the Facebook page, if you’d like to retroactively celebrate the occasion with me.

Emily’s Last Radiation Treatment Celebration

post radiation bell photo opp

Post-bell group photo opp with Dan, my parents, brother, and SIL

 

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