A Brain Mystery

A Brain Mystery

I lived in the same house in Mt. Vernon, Indiana from 1981 to 1997, until I was 17 years old.

I read The Handmaid’s Tale on my Kindle, which I received as a Christmas gift from Dan sometime around 2011. The book still lives on the device along with all of the other ebooks I’ve read.

Yet I have a vivid memory—something I see very clearly in my mind’s eye—of reading The Handmaid’s Tale on my Kindle in my bedroom in Mt. Vernon, Indiana.

I want to know how this is possible. Did radiation fry some important bits in my temporal lobe? Did chemo short out some neurons? Can I time travel?

Inclined to Recline

Inclined to Recline

On Wednesday, a new recliner arrived at our home via UPS. Believe it or not, I have not had a recliner in my home since something like 2003. That was three cities and a whole state ago. Sheesh.

For weeks, I’d been spending too many waking hours in bed or trying to get comfortable and see the TV from the living room couch. My neck and shoulder pain was only increasing, and I was depressed. Spending hours upon hours in bed made me feel sad and incapable.

Power ReclinerSo, I used some money from my YouCaring campaign to purchase this power recliner from one of those online stores always being advertised on HGTV.

I didn’t have to leave the house to shop for it. (Going out in public is hard—harder than it was when I was getting daily radiation treatments, but I’m also a little skittish about the possibility of getting “normal” sick because the dexamethasone “may lower my body’s ability to fight of infection.” So I stay home except for the odd trip to the ER.)

The chair basically just snapped together. And it’s comfortable. And my cat Izzy likes to join me for afternoon naps.

Now I can sit by the picture window in the living room and watch the birds and squirrels at the feeder and bath. When I lie back, I can look up and watch clouds float by. And when we’re binge watching Orange is the New Black, I can watch relatively pain free.

It’s nice.

***

Speaking of the dexamethasone, I’ve been back on it for about a week now. I generally feel better, but I’m not thrilled about regrowing unnatural facial hair. (If I’m honest, probably another reason I stay home these days.) They might be wispy and blond chin hairs, but they light up like the sun glistening on Lake Michigan when exposed to daylight.

The more important thing, though, is that I am eating and drinking again like a normal person. Everything tastes delicious on dexamethasone. Everything.

***

Thursday night I signed us up for health insurance through the ACA exchange. We still don’t officially have health insurance. They have my money, but BCBS of Illinois has things “under review.” It really, really sucks losing your job because you’re sick with brain cancer and losing your health insurance at the same time.

I know that, at least for now, I’m not supposed to be declined insurance for a pre-existing condition, but I don’t trust insurance companies. They’ve got ways of wriggling out of their responsibilities. And I am quite aware that should something not go in my favor, I have next to no resources to fight them.

What bearing should a person’s employment have on their ability to access healthcare? Why should someone with so much health-related stress be forced to navigate a ridiculous bureaucracy in addition to fretting about paying the mortgage without stable income?

I have to stop thinking about it or I stress too much for my own good.

***

While there’s plenty for me to worry about, I do want you to know that I’m more optimistic than this post lets on. I can’t stand the thought of people worrying about me too much.

Thanks to all who have donated and promoted my fundraiser, sent cheerful gifts, messaged me with words of encouragement, and who check in on me when I get a little quiet.

Enjoy your weekend!

 

Brain Tumor FAQs

Brain Tumor FAQs

recovery

Since my brain tumor diagnosis (diffuse grade 2 Astrocytoma), I have been answering a lot of questions. I thought I’d do a “Brain Tumor FAQs” post to help manage my limited time and energy.

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.

Going Home

Bad news first: I have the itchy, dreaded chemo/radiation rash.

Good news: I’m going home tomorrow instead of next week because one of my follow-up appointments was changed.

I haven’t seen my own house in 71 days!

The Last Brain Tumor Radiation Treatment

The Last Brain Tumor Radiation Treatment

Brain tumor radiation treatment number 28 of 28!!! I’m in the waiting room now at Siteman Cancer Center’s radiation oncology department, and it will probably be another 30-ish minutes before I ring that final treatment bell.

Some people ring the bell with just a couple of people standing by, and some bring their entire extended families. It’s a pretty happy occasion, for the most part, because coming to the hospital every weekday for weeks at a time is grueling and being done with that is a weight off. Not just for patients, but for caregivers too.

My parents, brother, and sister-in-law have come to the hospital with Dan and I to celebrate today.

I will be broadcasting the event on Facebook Live for people who want to join in but can’t physically be in St. Louis right now. (Which is almost everyone.)

Please forgive me if I get a little emotional. I’ve been listening to other people ring the bell for weeks now when they reach their final treatment, and it always makes me well up a little. So I can only imagine how it’s going to hit me when it’s actually—finally—my turn.

Radiation therapy has been hard, and probably a little harder than it would be otherwise because I’m doing it concurrently with low-dose chemo. (It’s supposed to make the radiation work better.) So I’ve got side effects coming out of my…pores. Yeah, pores. And all of that is on top of the fact that I’m still recovering from freaking brain surgery and lying down for radiation means lying down ON. MY. SURGICAL. SCAR. Yes, they put a cushion under my head, but I’ll be honest—the cushion does absolutely nothing for me.

UPDATE: Here’s the Facebook Live archive of my big day. The video ends kind of abruptly because I start crying. It’s an emotional time. What can I say?

For access to exclusive content including my memoir, join me on Patreon.

Last Radiation Eve

Last Radiation Eve

parkway hotel lobby.jpg

Our commute time to the hospital tomorrow will be 1 minute…and that’s just because I’m slow getting around.

Dan booked a room at the Parkway Hotel across the street from the Siteman Cancer Center so we can sleep in, have Panera for breakfast (also just across the street), and make tomorrow a total party.

Brain Tumor Radiation Treatment No. 15

Brain Tumor Radiation Treatment No. 15

Day 15 of 28. I am now have 3 full weeks complete, and I am officially more than halfway done with brain tumor radiation. w00t!

I have contracted what I’m calling the 4 o’clock flu. Because I am getting sick at that time every day now. Pretty sure it’s a treatment or med side-effect causing it because of it being timely, but which one is anybody’s guess at this point. I take between 16 and 20 pills every day…

My radiation mask is unbearably tight because of the steroids. Talks have begun between techs and my oncologist to see what they can do. Possibly adding a diuretic to help me shed some of the water weight.

I can bear the discomfort of the mask, because me & pain have had a weird relationship for a really long time. But if they can’t lock me in place because I don’t fit? Well, that’s a problem. They’re kind of persnickety about avoiding killing of the brain cells I still need.

The scar from my craniotomy is looking good. There’s some skin irritation from the radiation, which is making it angry and red. Basically, it feels like a a bad sunburn.

TGIF, though. The weather in metro St. Louis is gorgeous! Also, construction wall pics from Barnes-Jewish just because they’re part of my daily trip to the hospital.

For access to exclusive content including my memoir, join me on Patreon.

Brain Tumor Update for March 21, 2017

Brain Tumor Update for March 21, 2017

Stuff that still tastes decent, for the record:

Baked potato
Scrambled eggs
Vanilla ice cream
Yogurt
Bananas
Banana bread
Chicken
Sweet tea
Peanut butter
Green smoothies
Cinnamon raisin toast
French fries
Oreos
Pretzels

The radiation treatments are giving me canker sores and burning the skin around my scar. I have lotion for the burns and all kinds of stuff for dry mouth, so I do get some relief. I’m diligent about avoiding thrush, which is a common complication on radiation. (I had it when I had my tonsils out years ago and it. was. horrendous.)

In other news, I’m 6 hours past today’s appointment and mom says she can still see waffling from my radiation mask. That sucker is so damn tight now.

Talked to the radiation oncologist about the swelling and my worsening headaches. He says one option to reduce the headaches is to double my steroid dose. Unfortunately, that would likely also up my swelling, which is not exactly detrimental to my health, but it is really uncomfortable and makes it hard to get around.

For now, I’m just going to keep on keeping on until it becomes abundantly clear that I need to up the steroids or find another option.

Adding a picture of some dude getting head radiation so you can kinda get a feel for what I do mon-fri, and how the mask works. It keeps me from moving and keeps them from accidentally zapping part of my brain stem, which I really, really need.

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Radiation Week 3

Radiation Week 3

Today is Monday and the beginning of Week 3 of treatment. That means I have labs and doctors appointments in addition to radiation and chemo. It makes for a long day, so it’s also valet parking day. (On less stressful days, I try to walk to a wheelchair instead of plopping down in one first thing.)

The first two weeks weren’t terrible, but the cumulative side effects of treatment & my medicine are really being buttheads now. I’m so glad I enjoyed all I could at the start! That four weeks off from treatment that I get in a couple weeks is sounding really good about now. Can’t wait.

I’m really tired. The most frustrating thing currently is that I can’t write or color much. My hands are useless for gripping anything. I’m just that weak; tapping my phone uses up most of my spoons.

I want to do thank you notes and do things outside the house that don’t involve doctors or being pinned to a radiation table and read more and enjoy a movie or something, but I mostly just sit.

The good news is that by Friday, I will more than halfway through radiation. As Dan always says, “Eyes on the prize!”

11

Daily Chemo and Radiation Treatment

Daily Chemo and Radiation Treatment

First chemo & radiation treatments are complete.

Here’s how my morning went so far…

5 am: Take Zofran (anti-nausea)
5:30 am: Take Temodar (chemo)
6:30 am: Take regular morning meds
7:20 am: Get radiation
8 am: Have weekly meeting with radiation doc
9 am: Eat birthday cake

I’ve gained 10 pounds since they made my radiation mask. It’s hella tight now and a little disconcerting to say the least. The tech warned me that I had waffle marks on my face when she took it off. I looked reptilian and naturally made Dan snap a picture. The mask was so freaking tight.

Did I mention they clamped my head to a table with a mask and it was really tight? 😉

The hardest part of radiation though is lying on the table with nothing to do but ponder my circumstances. (Same for MRIs.) There was a fair bit of me trying not to ugly cry while they played the 80s rock station for me. Today was Paradise City, Shoot to Thrill, and Faithfully.

I am generally in good spirits, but have my moments. It’s healthy to have moments, I do believe.

The rest of my treatment appointments this week will be midday instead of early morning.

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