Brain Tumor · House and Home

Fuuuuuuuhhhh

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.”

It was FOREVER.

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.

 

 

Brain Tumor · House and Home

Ouch

Stuff hurts.

I went to bed yesterday at like 7:00 p.m., and then I woke up this morning at about 4 a.m. That’s a lot of sleep, even for someone with a brain tumor.

chocolate-factory-blueberries.jpgI go through these periods (that I think are weather-related) where everything swells up and I can barely move. If I were blue, you could cast me in the next Willy Wonka movie.

Imagine being this swollen and trying to bend over and pick something up off the floor. Or trying to roll over in bed.

Ain’t happenin’.

Anyway, last night during all that sleep, I had a really distressing dream. I was at a taco bar trying to grab some lunch, and instead of flour tortillas, this place had hamburger buns.

Night. Mare.

***

Before the hellish pain started this weekend, I had intended to write an upbeat post about all the nice things that happened last week. I’m a little too exhausted for much more in the way of writing, but I do have some pics to share of a few of the things that made my week, including: a blueberry buckle I made from a recipe on Pinterest, Milwaukee Summerfest socks sent by family, and the second zucchini from Dan’s garden this year that made the best zucchini lasagna in the world.

 

Brain Tumor · Medical Cannabis

Gleostine: Round 1, Part 1

It’s been about 72 hours since my first dose of gleostine, and I wanted to let you know how things are going.

No Puking, Hooray!

Although I was awash in waves of queasiness for the first 36 hours or so, my stomach never gave up the goods. (Thanks, Zofran. Thanks, medical cannabis.)

This is particularly encouraging because I’m also just a few days into another dexamethasone taper, and I learned at the oncologists’s last month that dex is sometimes prescribed as an anti-nausea med. So it could’ve been a double-whammy. But it wasn’t. I am grateful.

So Much Fatigue

The most severe side effect I’ve experienced is a crushing fatigue. It surpasses any fatigue I’ve experienced to date and feels like my legs and arms are encumbered with cast iron while I try to wade through peanut butter.

The good news is that it seems I’ve reached peak fatigue already, and I’m starting to get some energy back. The new sativa strain I vape during the day actually gives me a little boost of energy, but it’s not powerful enough to completely counteract the chemo.

We celebrate tiny miracles in this household though. Usually with food.

Gearing Up to Say Goodbye to My Eyebrows

I rubbed my eyes today, and noticed a disconcerting number of eyebrow hairs just fall out. I have no idea if this will be limited to eyebrows or if I’ll start losing the hair on my head too.

And I was just bragging yesterday about how I was going for an Anne Burrell-inspired hairdo as my hair had been growing really well the past couple of weeks.

No Allergic Reaction

The absolute best news is that I’m able to tolerate the gleostine. Having a few extra weeks of treatment made it possible for me to enjoy some outdoor time and play Just Dance, but I was getting itchy about doing something to proactively target the brain tumor.

Brain Tumor

My New Chemo: Gleostine

gleostine chemotherapy

“I know what I want for dinner tonight,” I told Dan. “I want the pulled pork nachos from Hickory River.”

I’m gearing up to take the first dose of my new chemo pill tonight, and preparing for the worst by indulging in a favorite meal. There’s no telling how long it might be before I like food again.

And it might all be totally fine. I could tolerate this chemo very well, and I hope I do. But that doesn’t mean I’m willing to risk it by eating sad food for dinner tonight.

Related: my online activity might be negligible the next 48 hours or so. Or it might be fine. I’m just saying—if it seems like I’ve disappeared, I have. But it’s nothing unexpected. (In such a case, feel free to harass Dan on Facebook or by text if you have questions.)

***

My new chemotherapy med is gleostine.

Like Temodar, gleostine (it has so many names: CCNU, CeeNU, lomustine) is also used for treating primary and metastatic brain tumors. (My tumor is primary, by the way, meaning it started in my brain and didn’t spread there from some other cancer.)

It comes in capsules, with really trippy instructions like “don’t touch this shit without wearing gloves” and “P.S. we should really disclose something about mustard gas derivatives.”

Oh, and one 200-mg dose costs $1100 without insurance. With my particular form of Obamacare*, one dose costs me $110. However, because I pay $350 every month in insurance premiums and don’t have a job and my Social Security Disability case is in limbo, it still feels like it costs an arm and a leg.

I’d rather it cost a brain tumor.

***

My orders are to take the gleostine at bedtime on an empty stomach, save for a preceding Zofran and water cocktail—designed to minimize my chances of puking up the very expensive pill.

I’m not supposed to eat anything for a couple of hours after taking it either, but with any luck I’ll be asleep. If I’m not asleep, I’ll probably be puking and not eating. You see how I can’t fail here, right?

***

Side effects. To be an informed patient, you have to read the literature. Which means you have to lie to yourself and pretend you aren’t petrified that all of these horrible things could be part of your future.

Common side effects:

  • Low blood counts (Onset: 10-14 days, Nadir: 5-6 weeks, Recovery: 6-8 weeks)
  • Anemia
  • Increased infection risk
  • Nausea and vomiting

Less common side effects:

  • Decreased appetite
  • Mouth sores
  • Infertility

Delayed side effects with slight risk:

  • Pulmonary toxicity (could be delayed for up to 3 years)
  • Kidney toxicity
  • Blood cancer (Nadir: 4 weeks for platelets, 6 weeks for white blood cells)

***

In summary, I’m a little anxious about the unknowns, but not so freaked out that I’m willing to put off treatment. Wish me luck!


* Now would not be a good time to take away my Obamacare, ‘kay?