Brain Tumor

Just the Facts

Repost from Facebook in case you don’t get updates there:

1. We are home from another 6-week checkup at Siteman Cancer Center in St. Louis.

2. My platelets are up from 51 last week to 64 this week. So they’re finally climbing again instead of tanking.

3. My platelet count has to reach 100 before I can take next my chemo round, but the oncologist sent me home with the pills and told me they’ll call me when my weekly labs reach the magic number. In the meantime I just wait.

4. If my platelets had dropped under 50 at any point, they’d have lowered my chemo dose. The nurse chuckled when I told her they were 51 last week. (It’s like I’m getting the highest possible dose without going over.)

5. The oncologist wants me to get with my primary doctor here in Urbana to set up a standing order for IV fluids. That way I can get them before it becomes an ER situation and keep beds open for people who need more than a couple bags of saline.

That’s all I got for now.

Brain Tumor

Dan and Emily Go to the ER

Old Me used to leave the hospital with a piece of gauze and some tape and think, “Geez. That’s kind of overkill for a little speck of blood, isn’t it?”

But Current Me takes chemo. And chemo makes your bone marrow go on vacation. And platelets don’t get made when your bone marrow is on vacation. And platelets are kind of important for stemming bleeding.

Anyway, I got my gauze and bandage and discharge papers after spending yesterday in the ER due to some wicked dehydration. Then Dan drove me home.

I looked down at my hand while climbing out of the car, and something looked off. It took me a second to catch on.

“Gah!” I shrieked. The gauze was soaked and oozing red. I lifted the back of my left hand to Dan’s face.

***

The ER doctors are always fascinated by my story. Once they find out I have a brain tumor, they check All the Things™.

So I go in asking for IV fluids and they’re all, “Well, just to be safe…”

It’s like asking for an oil change and being talked into adding on the 27-point inspection. The doctor this time ordered a chest x-ray, 6 blood tests, urinalysis, an EKG, and conducted the standard physical examination.

“You dizzy? Have vertigo?” he asked, shining a light in my eyes and watching my pupils.

When I answered affirmatively, he wondered if I knew what he meant by vertigo.

“I have nystagmus,” I replied. “Me and vertigo are like this.” I crossed my index and middle finger.

That piqued his interest. So he had me track his finger with my eyes, and when they fluttered like I promised they would he seemed satisfied.

“Yep. That confirms there’s something wrong in central processing.”

Dan and I thought him a little quirky compared to today’s colder, more aloof doctors. A country doctor in a college town ER.

He was good. I told Dan, “I always prepare to fight for a second bag of fluids. He just offered.”

***

At home in the recliner I asked Dan to hunt for a clean bandage. He returned with one from the linen closet.

“Let’s just clean that first,” he said noticing the blood that was caking on the back of my hand.

“Ouch.” The pain of him swabbing my hand surprised me a little.

“Sorry,” he said, and then started dabbing at it extra gently. I told him he’d never been anything but good to me but I was still shocked sometimes by how tender he could be.

“Who would keep hurting someone who says ‘ouch’?” he shrugged.

Who indeed.

Brain Tumor · Medical Cannabis

Cancer Ramblings

I’m exhausted. The kind of exhausted where I’m too tired to get up and plug in the cannabis vape pen that needs charging because I spent all that energy an hour ago making toast with peanut butter and a cup of green tea.

So I’m lying in bed composing a blog post on my phone instead of standing up, and I’ll ask Dan to charge my V2 Pro next time he comes in to check on me.

***

My platelets are low (64 at last week’s count) and I’ve been barfing again. No idea if those two things are related. Also, though I don’t really want to admit it, I’ve been basically bed ridden for a couple of weeks.

It’s not the cancer; it’s the treatment.

After my last round of chemo, I didn’t regain much strength. I mean, it’s always hard, but it seems to be getting harder. Could be the absence of the dexamethasone now. Could be the cumulative effects of the chemo treatments. Could be the shit-ass weather and extra migraines I’ve had this month.

That’s the thing about brain cancer and its treatments. So many potential causes for the add-on problems, and no sure way to identify the cause.

So you just endure.

***

Dan just plugged in the vape for me and told me goodnight. He did Boomer’s voice for him as he pulled the door closed.

“Love you too, Ma.”

“Love you too, Boom!”

“Love you too, Ma.”

(I don’t know. We’re weird. We do voiceovers for our pets. Also I sleep in the guest bedroom. It sucks. Cancer sucks.)

I asked Dan once why Boomer always said “I love you too” over and over, and he informed me that it was because Boomer had to have the last word.

Duh.

***

Anyway, barfing.

I woke up at 11:30 last night and reached for a vomit bag. The combination smell of those vinyl bags, my PB&J, and stomach acid left me heaving long after I’d blown all my chunks.

When the spasming in my stomach stopped, I brushed my teeth for the second time and walked the bag to the garage. I had called to Dan for help, but he was snoring. Hard.

Oh well, he deserves to sleep, I thought.

Unfortunately, I had to turn the hall lights on, and he stumbled in to check on me when I returned. I was sitting on the bed pouting. The dog and cat were right on Dan’s heels, and I commented that everybody had come to console me.

If there’s a bright side to puking in this house, it’s that everyone is curious. You’re never alone.

***

Regardless, I hate throwing up. It’s the worst. And I mostly hate food now too. (I’ve lost 26 pounds since quitting dexamethasone, but don’t worry. I’m still unbelievably fat for a girl who hauls 2-pound vomit bags to the garbage a couple times a week.)

***

I have no wrap-up for this post. I’m just going to try to sleep now.

Brain Tumor

Chemo Round 5 Is Complete

I lost another 1.4 lbs this chemo week. For a total of 14.4 since quitting dex (about a month ago).

I’ve for sure got the pounds to lose right now, but I’m concerned about sustaining this through the rest of my treatments, because I’m not in control of this loss. It’s just one more thing that’s happening to me.

This round of chemo was the worst to date, and I’m confident it’s because I didn’t have the steroid to mitigate the side effects.

One side effect of the chemo that I haven’t mentioned before (because I was only sort-of aware of it) is a crushing depression and anxiety.

Anxiety asks: What if this god-awful hell isn’t temporary like you think it is. What if you can’t get the chemo out?

And Depression answers: Of course it’s permanent now. Since when did you become such an optimist, Anxiety?

And then I’ll read about someone in my brain tumor group having their tumor 97% cut out and I’ll cry to Dan. “They can’t cut mine out. I have to keep it.”

It’s rough. Some days this thing reduces me to a five year old that doesn’t understand why she doesn’t get presents at her friend’s birthday party too.

Other days I’m like, “Want to see where they cut my head open?”

Anyway that depression goes on for the last 24 to 48 hours of chemo week, and then I wake up on the 8th morning with the cloud gone, and I’m chatty and happy and smiling. I feel sort of silly for being so emotional.

But that’s cancer. And that’s chemo.

Brain Tumor · Medical Cannabis

I Might Owe Dex a Very Small Apology

It appears I was a bit hasty in my judgment of dexamethasone. Still suffering after a round of chemo without it, I can now see that in spite of its horrible side effects it was masking some of chemo’s even more horrible side effects.

I won’t go into the full details of my emetic escapades, more for my sake than yours. But I will just say that Activia is off the menu for a few days while I purge my scent memory.

There was some discussion between Dan and I about what to do next, seeing how I spent maybe three hours not in bed this past week.

“You could try taking the dex only during the week you do chemo,” Dan suggested.

I whined something about not wanting to while admitting it wasn’t an unreasonable suggestion. “It was just so hard to quit. I almost think I’d rather suffer some new evil than go through that again.”

For now I’ve decided to take more Zofran, despite the headaches and hiccups. I’ll use cannabis to make me want food and Zofran to keep it down.

At least until the next thing. Because there is always a next thing.

Brain Tumor

Chemo Round 5

Last month when I completed chemo round 4, I did it at Mom & Dad’s to give Dan a couple of weeks off from caregiving.

It was the first chemo week were I had zero GI distress on the Wednesday following taking Gleostine, so naturally I was obsessed with why that time was different.

“Mom buys different yogurt,” I told Dan. “I was reading the labels and it has different active cultures in it. Buy me that Jamie Lee Curtis junk next time.”

When you’re on chemo you get lots of people telling you how much you need to eat yogurt, but they don’t really bother to say which kind. I switched to Activia at home. No GI distress for round 5 either.

I have at least one thing to celebrate.

The rest of round 5 has been difficult. Being off the dexamethasone is a two-edged sword. I’m losing weight, but my appetite is crap. Not eating plus not having the steroid is making me even more weak and tired. Something I thought was a physical impossibility.

Food is mostly gross right now, and there’s little rhyme or reason to what I can stomach and what I can’t. Generally, the warmer the food, the more it smells, the more it makes me want to hurl.

But eating cold food in the winter gets old fast.

And most of the time I just feel too tired to eat. Like moving my jaw to chew is just too much to ask of myself.

Also the word “chew” made me feel sick just now.

*Puts hand over mouth*

I should be coming to the end of the worst part of Chemo Week #5 soon though. And I managed to venture out into the back yard today for a few minutes.

It was a little too windy to not be cold, but the fresh air was good for me. I’m in need of an early Spring. If you see that groundhog, pick him up by the scruff and threaten to replace him with a marmot unless he does the right fucking thing.

Brain Tumor

Even My Fatigue is Tired

I woke up, did Head and Shoulders Knees and Toes, and washed my morning meds down with a large glass of water. Then I gulped a protein shake. And then I climbed back in bed and began writing this blog post on my phone. (That’s how you know I’m exhausted, because I hate writing on my phone.)

It was something like -2°F last I looked. A life-long fan of winter, I’ve noticed a change this season. I’ve been sick of winter since December 26. I need sunshine and warm air on my cheeks, even though two-thirds of the meds I’m on make me photosensitive and come with warnings: “avoid direct sunlight or perish.”

Or something like that.

I’m anxious in the anxiety way (as opposed to the weird “looking forward to something” way people use the word where I’m originally from). We’re heading to St. Louis this afternoon for a day full of shopping and sightseeing tomorrow.

Did I say sightseeing? I meant tests and doctors. Silly me. Starting at 7:45, which means leaving the folks’ house an hour early to drive into the city and park and allow me time to hobble to the hospital MRIs. (The Center for Advanced Medicine MRIs are closer, but were all booked up. Ugh.)

Anyway, about my anxiety. I haven’t been doing so well lately. A lot of time in bed. A lot.

I’m finally off the dexamethasone, and have been for two weeks, but I can barely walk I’m so weak. And the pinchy pain that keeps nagging me? I think it’s swollen lymph nodes, based on location. My guess for cause would be rebound swelling after being on the dex for so long and then quitting. But honestly I have no fucking idea what the cause is. I know I hurt. I know I’m tired.

And that brings me to the source of my anxiety: I don’t have good things to tell the doctor. See, chronically sick people dread telling their doctors that things aren’t good or improving or at least not getting worse.

Spending years in the fucked up US medical system with a horrible doctor or three conditions patients that it’s on us to feel better whether we do or not. It’s so traumatizing that, even when the bad doctors have all been fired and there are only good ones left, we still feel responsible for not getting better.

“But Emily, you have a brain tumor. Your doctors totally get it,” is something I sometimes tell myself. But I suspect it’s something like a veteran saying to herself, “It’s OK. You’re home now. Fireworks are fine.”