Brain Tumor

So Stinking Close

Got my CBC results yesterday, and my platelets were 93. Close, but not quite the 100 we were looking for, and my doctor is a bit of a stickler for these things. That means Chemotherapy Round 6 is delayed by yet another week, pushing me about three weeks past the ideal six-week dosing.

I currently have mixed feelings about the delay. I mean, I really want to get done with all the chemo crap. This roller coaster of feeling like a steaming turd and then being throat punched by another dose of gleostine just as I’m starting to feel human again is making me cranky.

But! Going this long between doses has also given my wrecked body a little bit of a break. My appetite is better, my energy is up slightly, my neuropathy is less intense, and my dehydration is manageable with enough sports drinks and electrolyte pops. As a result, I’ve had just enough energy to accomplish a few necessary items on my to-do list—including renewing my driver’s license and getting an eye exam.

Not that I drive right now.

I’m lucky in that I don’t have seizures and my doctor has not revoked my driving privileges, but I’m not comfortable driving. I get vertigo looking left or right, and I still don’t have full range of motion when turning my head. I find the thought of getting behind the wheel really unsettling. But I thought it would be easier to keep my license current than let it lapse.

And now it’s back to trying to get a standing order for IV fluids. (I love my team at Washington University, but they’re kind of far away. Things get complicated when it’s time to coordinate the little stuff that needs to happen close to home.)

Happy Wednesday.


Brain Tumor

Is it Monday Yet?

I went to bed last night feeling decent; I woke up this morning feeling completely dehydrated. Then I dry heaved into a vomit bag until I could finally get a Pedialyte Pop down.

This is becoming my pattern:

  1. Drink fluids all damn day, including 20 oz. of Gatorade, and a eat a Pedialyte Pop right before bed.
  2. Dehydrate while I’m sleeping.
  3. Wake up dizzy and thirsty.
  4. Dry heave.
  5. Eat another Pedialyte Pop.

The big mystery is why do I keep drying out over night? I have a humidifier, and humidity in the room is reading 60%. I have water and something with electrolytes before bed every night. I drink between 80 and 100 ounces of fluids in a typical day. And it’s been 7—almost 8—weeks since my last chemo round. (I’d anticipate problems in the first week after taking the Gleostine.)

I’m trying to get through the weekend without a trip to the ER, because after next week I’ll be fixed up with a standing order. And I can get IV fluids whenever I need them without taking up a bed in the ER or accruing thousands more in medical bills.

If I can just make it a couple more days.

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.



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.