Jun 25, 2018 | Brain Tumor
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?
Jun 17, 2017 | Brain Tumor
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.
So, 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!
Apr 25, 2017 | Brain Tumor
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.
Apr 14, 2017 | Brain Tumor
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!
Apr 12, 2017 | Brain Tumor
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?
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