Inclined to Recline

Inclined to Recline

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.

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!

 

My Brain Tumor MRI Results

My Brain Tumor MRI Results

May 11, 2017 | Brain Tumor

I spent Monday through Wednesday this week in St. Louis for follow-up appointments. Here’s what was on the schedule:

  • Monday: First MRI following completion of my radiation therapy and chemo round one.
  • Tuesday: Follow-up with neurosurgeon regarding my progress recovering from brain surgery
  • Wednesday: Labs and appointments with my radiation oncologist and my medical oncologist.

The MRI

The scan itself was mostly okay. I had a couple of freak-out moments, but it had nothing to do with claustrophobia or scanxiety.

It was more PTSD-like in that the unmistakable clicking and buzzing sounds of the MRI machine sent me back to the early days of diagnosis and ER life.

A couple of tears might have rolled out the corners of my eyes. In all, I spent about 45 minutes inside the machine, nearly falling asleep toward the end.

The MRI Results

My doctors were all on the same page about the results—pleased that the MRI showed the brain tumor was “stabilized.” Meaning things weren’t worse. My radiation oncologist was the most excited, telling me “Congratulations!”

I should probably be happier about this than I am, but if I’m totally honest I am not overjoyed about “stabilized.” As a patient, you kind of want to hear something like, “It’s half the size it once was. Your progress defies the odds!”

Know what I mean? I already knew the damn thing was slow-growing when they guessed I’d been carrying it around in my head for years.

I was confident it wasn’t going to double in size since February. I also thought going through two months of awful surgery, diagnostic procedures, and cancer treatment was going to get me something more than “it hasn’t gotten any bigger.” You know?

Not that I’m ungrateful. Just an overachiever, I guess.

What’s Next

I start what we’re calling my maintenance chemo schedule as soon as I get the drugs. It’s a 28-day cycle where I take my chemo pill, Temodar, in the morning for 5 consecutive days, and then I have 23 days off. Next month, I do the same thing and so on.

Even though it’s just for 5 days at a time, I’m still a little concerned about how I’m going to handle things. The dosage (320 mg) is more than double the daily dosage I took earlier. The bold, underlined, all-caps text on my patient instruction page says:

DO NOT SKIP ZOFRAN BEFORE EACH DOSE OF MAINTENANCE TEMODAR EVEN IF YOU TOLERATED TEMODAR WELL DURING RADIATION.

So I’m guessing I might still need to keep my barf bags handy.

I don’t have another MRI for two months, but I do have to see my medical oncologist again next month.  From here, the doctor appointments are becoming less and less frequent. I don’t see the neurosurgeon until September or the radiation oncologist until July.

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What a Difference a Brain Tumor Makes

Apr 11, 2017 | Brain Tumor

brain tumor treatment.PNG

Getting nostalgic as I near the end of radiation. These pictures fascinate me. I don’t look like the same person and I don’t feel like either look like me! First one dated 2/13, the day I was discharged from the hospital and 4 days post-tumor biopsy. Second photo from 3/6, my first day of radiation therapy.

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