Brain Tumor

Here’s What’s Happening

siteman cancer centerI had follow-up appointments with all of my brain tumor doctors earlier this week at Siteman Cancer Center. Posting a bare-bones update so I can keep people informed but not expend too much energy.

I’m tired, guys.


I got an all-clear as far as recovery from February’s brain biospy. I’m still frustrated with my progress, because I want to be perfect. But doctor is very happy with my progress and says I don’t have to go back to him unless something comes up. As a part of my medical team, he will continue to monitor my periodic MRIs.


The second dose of chemo (gleostine) will be higher than the first. Since I had the allergy to Temodar, he didn’t want to start me off with too high a dose of the new chemo and cause me additional problems. Things went well and my blood counts were decent, so my next round will be higher. I have the pills in-hand, but don’t plan to take them until Monday.

He’s given me the go-ahead to try tapering off of dexamethasone again with some flexibility to do the taper however my body can handle it. His only admonition was to go back on it immediately if I had any problems. No worries there. I’m not keen on ER visits.

I asked him about getting my flu shot this year, and he gave me his blessing with a caveat: get the shot on week 5 of my chemo cycle when my counts are the highest and my body is at its toughest.

*** Special Request: If you’re able, get your flu shot. Yes, even if you feel like you don’t need it. You are helping to protect people like me with compromised immune systems stay as healthy as possible. ***

Radiation Oncologist:


He only needs to see me every other MRI, assuming my scans continue to look good.

Brain Tumor

Cooking with a Brain Tumor: Giant Zucchini Edition

This is tonight’s dinner, made by yours truly with the ginormous zucchini Dan yanked from the garden the other day. It took a long time for me to get these things done—and Dan handled everything that required knife skills or a food processor—but I feel so stinking alive making food for us.

The recipes, if you’re interested:

Summer Fresh Corn and Zucchini Chowder


Zucchini, Cheddar Cheese, Chive & Buttermilk Quick Bread

Brain Tumor

Downs and Ups


While checking in to my hometown clinic for standard chemotherapy blood work last Monday (with my month-old Illinois Blue Cross Blue Shield ACA marketplace insurance), I learned that medical services at Carle are not covered by my plan.

That includes visiting my primary care physician—whom I really need to fill in on my progress—and getting the physical and occupational therapy my oncologist prescribed.

My Washington University/Barnes-Jewish Hospital doctors (in freaking Missouri!) are on the plan, and that’s not insignificant—but what the hell? How does that make any sense?



On Saturday, I received this little letter in the mail notifying me that the government agrees that I am, in fact, disabled and qualify for disability benefits. This is a relief, because unlike the LTD benefits I wrote about earlier, I can get SSDI for longer than 12 months.


The official-ness of being on SSDI makes me a little sad too, though. I don’t imagine I really have to explain why.

Unfortunately, disability benefits don’t even come close to covering living expenses for the two of us, let alone make it possible to pay off mounting medical bills. (I was billed more than $14,000 for my ER visits on June 7 and 8. I can’t even.)

But whatever. Blood and turnips, bitches.


However, now that I’m officially qualified for SSDI, it might be easier to find additional financial assistance on the hospital bills. I’ll start making those phone calls as soon as I’ve got the spoons.


Brain Tumor · House and Home


If yesterday’s theme was Fear and Sadness, today’s theme is Anger and Frustration.

Anger and frustration times eleventy kabillion zillion jillion.

I should back up though, or none of this will make any sense.

Since I came home in April, I’ve been using avoidance to cope, to ignore facing just how much I still can’t do.

For example, I haven’t tried to paint the shutters on the house because I know I can’t, and I know that trying would end with me throwing myself a pity party. There’d be lots of swearing at this pity party. Possibly destruction of my own property.

However, by not even attempting to paint the shutters, I save myself from the white hot tears of frustration that come when a woman (whose life motto has been something like “Fuck all y’all, I’m gonna do this thing”) is forced to confront the fact she cannot do some of the most basic shit.


But let’s talk about what’s going on today, the thing that prompted me to type up this rant:

dining room table.jpg

This is what my dining room looks like right now, and it’s looked this way for several weeks. Until today, I had successfully been soothing myself by ignoring the pile or reminding myself of a few simple truths:

We have other priorities.

We don’t sweat the small stuff. Clutter is small stuff.

It’s not where it belongs, but at least it’s clean.

Some of it is even folded.

But this morning, none of that was enough. I wanted to see a flat surface in my house with nothing on it, and I wanted that flat surface to be my dining room table. But getting to that flat surface was a little more complicated than just putting some clothes in the bedroom where they belonged.

To make this fabric mountain go away would mean packing up all the clothes in the bedroom that don’t presently fit me. (I’ve gained 36 pounds since surgery in February—nothing I owned  prior to my brain tumor diagnosis fits. Nothing.) So I got out the Space Bags and started emptying dresser drawers. Already a lot of work.

Well, I couldn’t get the vacuum to suck the air out of the bag, so I walked away. I was already breathing heavily, flushed, overheating. I hadn’t done much of anything yet, but fine. I pivoted and tried to hang up a few hoodies in my closet.

I struggled to make my hands do what I wanted, and when they refused and the hoodie was just a twisted up mess on a plastic hanger, I screamed “God-fucking-dammit!” Dan and Boomer came rushing down the hallway.

“I have to go sit on the toilet now,” I told Dan. They watched me as I hobbled down the hallway.

My emotions are directly tied to my screwed up digestive system. And as soon as I wrapped up the last raging syllable of my exclamation, my colon was like, “It’s go time, bitches.”

And that made me cry, because it’s really, really hard to wipe my ass.

What? You thought brain tumors were sexy or something?


Anyway, I’m back in my recliner, and I’ve given up on the laundry project for now. The guest bed is covered in sloppily folded clothes, laundry baskets, and space bags. Tomorrow is another day. Here’s hoping it doesn’t suck like this one.



Brain Tumor

This Isn’t Spinal Tap

At about 5:45 this morning, I left the comfort of my recliner and climbed into bed with Dan and Boomer. I’d been awake for a little over an hour, feeling sad. I’d been crying, or on the verge of crying, the whole time.

I slept well (in the guest bed) last night, but when I woke up I was alone and reliving February’s failed spinal tap. I don’t know why. Maybe I had a dream that sent my wandering brain down that path? Or maybe it’s just one of those things that’s bound to happen to me from time to time.

Thankfully, Dan always knows how to make me feel better.


Blausen 0617 LumbarPuncture

I don’t imagine many people get upset hearing a doctor say they’re not going to do a spinal tap after all. But the day before my brain surgery, I cried one of those embarrassing heaving-style cries in a hospital waiting room because a doctor told me just that.

I’d been wheeled down to the place where doctors performed X-ray guided lumbar punctures early in the morning. Other people were sitting in normal chairs, but because I was an admitted patient they just rolled me down there in bed and pushed me up against a wall out of the way. It was pretty early—no one in my family had arrived at the hospital to visit me yet.

I’d been waiting anxiously for probably 20 or 30 minutes when a doctor approached me.

“They aren’t going to do the spinal tap, Emily. The doctor has decided that it’s too risky because of the location of the brain tumor. The doctor doesn’t think it’s a good idea.”

Any relief that I might have felt about the procedure being called off was eclipsed by the words “it’s too risky.”

I immediately started in with that can’t-control-your-breath toddler sobbing, and the doctor grabbed my hand. “We’ve called hospital transport to get you back up to your room. It shouldn’t be too long.”


The medical receptionist came over to me with a box of tissues. “I called transport again. Someone is on their way. Can I get you anything?”

I took a fistful of tissues and shook my head.

(The neurology team ended up doing the spinal tap the next day. In my hospital room. And they had to dig. But the failed spinal tap experience remains my most traumatic hospital experience to date—even more traumatic than the brain surgery. Probably because I was entirely lucid and entirely scared.)


“What’s the matter?” Dan asked as I struggled to find a few inches of space not hogged by Boomer.

“I’m sad.” I explained my morning to him.

“Well,” Dan said, “I just had a horrible nightmare.”

“Oh?” I asked.

“Someone was in the house. Drinking out of my favorite coffee mug.” He paused dramatically and then added, “And I had to drink out of the small red one.”

Brain Tumor

Gleostine: Round 1, Part 2

emily suess
Moonfaced and bedheaded, but happy the blood draw went well.

Yesterday was my first post-gleostine lab day.

Gleostine chemotherapy, like all chemotherapy, requires a weekly complete blood count (CBC) with differential. On a pretty basic level, it lets me know how dangerous it is to go out in public without a mask. On a more complicated level, it lets my doctors know if I might need a course of antibiotics or perhaps a break from gleostine. This stuff is hard on the cancer and the body, after all.

Anyway, I don’t typically look forward to things that require my being stuck with a needle. Not because I have a phobia, but just because who does? As a patient who’s been stuck for blood samples and IVs hundreds of times since February, I think my veins sense when the needle is coming and get very unhelpful.

A couple of weeks ago, a one-stick event turned into a four-stick event simply because my veins were tired of cooperating.

So I always say something before the tourniquet goes on to put everyone at ease and manage expectations.

“I’m a hard stick,” I told the phlebotomist. “Start wherever you like, with whichever arm you like, but know that you might have to go to the back of the hand and try several times. And I’m okay with that.”

“Do you get stuck a lot?” she asked.

“Heh. Yeah, a LOT.”

She tried the left arm and couldn’t find a suitable vein. She didn’t even try with the needle. Just unwrapped the tourniquet and moved on.

“I drank twenty ounces of water before I came here.” (I always get asked if I’m drinking enough water. Always. The answer is: I am up peeing three to four times a night. I’m getting all the water I can without drowning.)

But thank the patron saint of blood draws, she found a pretty vein in my right arm before I even finished explaining that I wasn’t a bad patient.

One stick, and the blood filled up the vial in record time.

By 10 p.m., the test results were already in my patient portal, and everything is in range so far.

We’ll see what next week brings.


Brain Tumor

The Check Really Was in the Mail

Blank checkAll in all, this week was a good one. Mostly because I got a check from my long-term disability insurer and that has put me in a much better frame of mind.

It’s not as cozy as an actual paycheck, but it’s genuine money. And while our boat could still sink someday, we have more time to row closer to shore. I might even be able to afford co-pays for a moderate PT/OT program. And I think I will be able to use YouCaring contributions to pay down some medical bills again instead of using them on groceries.

I also heard from the SSDI people in Springfield, and it’ll still be a couple of weeks before I have an official determination—BUT!—the adjudicator for my case made it sound like my ruling would be favorable.

For those of you who might be curious, here’s how the disability stuff works:

  • Long-term disability private insurer will pay 60% of my former income for a period of 12 months.
  • If SSDI kicks in, the long-term disability benefit decreases by however much my SSDI turns out to be (I don’t get to double-dip, dammit). They will supplement with a payment that keeps me at 60%.
  • After 12 months, the long-term disability is over.
  • SSDI continues until there’s some kind of change, like me being healthy enough to work again.

Huge, heartfelt thank you from Dan and me to everyone who has helped us out since my diagnosis. You are the reason we’ve made it to this point and can finally take a deep breath.