I Couldn’t Title This Sober

I Couldn’t Title This Sober

I’m so proud of myself for pooping today, I should buy myself this T-shirt.

The exacerbated nerve pain increased rapidly after the edible wore off yesterday, so I decided not to be a hero. I took a 10mg (what now?) square of the Incredibles strawberry crunch bar around 4 o’clock. I microblogged some notes and will review the Incredibles edible like the Ache Away chews. But later. I don’t feel like doing it right now.

Anyway, that’s why I took 10mg again instead of reverting to my usual 5 mg. Easier to compare notes with like dosing.

That’s my story, and I’m sticking to it.

I see today that the barometric pressure has topped up again and the weather should be stable for a couple of days. Fingers crossed that does the trick, and this present migraine is on its way out. Or I’ll have to shake my fist at a cloud or something.

Edibles are dehydrating, in case you’re not familiar. (If you don’t know how dehydration can complicate IBS-C, congratulations for being regular. I hate you.) So I have to drink extra water while sleeping 6 additional hours a day and doing my best bipedal sloth impression when I’m awake my eyes are open.

What I’m trying to say is that dragging a cup of water to my face while under the influence isn’t easy, but somehow I managed to negotiate an annoyingly troublesome side effect of medical marijuana before things got out of hand. I feel accomplished. Don’t take pooping for granted, people. Listen to your Auntie Em.

Also iced coffee is medicinal but looks like I’m just treating myself. So next time your evil co-worker Carol comes in with that Frappe, you have my permission to assume she’s cranky for reasons and giggle your way to 5 o’clock. I’m full of great life advice today. Bookmark this post. I’ll wait.

I have to take another nap now. Bye.

Doesn’t Everyone Have a Favorite Vomit Bag?

Doesn’t Everyone Have a Favorite Vomit Bag?

This post is about cancer and vomiting. Please skip it if that’s not your thing or it hits just a little too close to home.

I threw up into my favorite vomit bag this morning. It’s not something I do every day, but it happens frequently enough post-chemo that I’ve had strategically located vomit bags in place since 2017. In the drawer of the nightstand, in the end table by the couch, in the glove box, and in the seat basket of my Rollator. When those run low, I always have a backup stash in the linen closet in the hallway. (These are my preferred bags if you’re curious.)

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That’s the cancer life, I guess—having a preference in vomit bags. I worry they’re not eco-friendly but have ultimately given myself a pass. Mostly because I move slow and reaching alternative receptacles isn’t always possible. But also because (pro tip for you here) stomach acid is a lot less likely to eat the lining of your nasal passages if you’re upright with a bag over your mouth as opposed to hunched over a toilet or trash can.

Anyway, I woke up feeling severely dehydrated this morning, which is another thing I still have trouble with over a year after my last gleostine: I always dehydrate when I’m sleeping. I keep water by my bed but it doesn’t really help unless I wake up to drink some every hour or so. A lot of times I do wake up. Usually to pee (go figure!) and I just perpetuate a vicious, vicious cycle. Sometimes though, what I manage to drink during the night isn’t close to enough.

So this morning I woke up with a pounding headache and was dying of thirst. I drank about ten ounces of water with my AM round of meds—Ritalin for my cancer fatigue, Vitamin D for a pretty severe deficiency, Synthroid for a thyroid my doctors destroyed (on purpose) fifteen years ago, and two Tylenol for my unbearable headache. I usually throw everything down in one take, but I was feeling cautious this morning. I dropped one pill at a time until I got to the last two. When I tossed the Tylenol on my tongue I immediately started gagging. I wasn’t always like this; brain cancer has definitely fucked me up. But these days I’m so sensitive I can’t even use toothpastes that are too foamy because they make me puke.

“Shit. I’m going to barf,” I said to Dan spitting the Tylenol into my palm.

“You still have the bags in here?” he opened the drawer of the end table and handed me one.

I lost my pills and vitamins. Thankfully, none of them were too expensive. But during treatment, I lost thousand-dollar pills this way. Then later I learned it’s not uncommon for cancer patients to vomit through a sieve for this very reason.

I’m feeling OK enough right now. After a Pedialyte pop (also a staple in our house) I was brave enough to try an English muffin and that went just fine. I can’t shake the headache, and it’s starting to settle into my eye teeth and molars. I figure I have about 30 minutes of screen time left before I classify this fucker as a full-blown migraine. Which sucks, because my migraine app just congratulated me for going three whole weeks without one.

Last thing before I go, though, because I want to log this: I have a hard pea-sized lump in my right armpit that’s been hanging around for about a week. Part of me is worried about it. Part of me is like, meh, I already have brain cancer. Oh! Brain cancer fun fact: we don’t get routine PET scans to check for the spread of cancer because—and I’m paraphrasing my oncologist here—brain cancer usually stays in the brain.

Yeah, so I know if this lump is still around when I see my new primary next month she’s going to ask how long it’s been there. If it’s in my blog, I’ll be able to answer that question. Could be just be a little infection in the lymph node—my immune system is pretty shitty after all. We’ll see if it clears up before my appointment.  OK, leaving abruptly so I can log this migraine in my tracker.

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.

Dan and Emily Go to the ER

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.

Dehydration & POTS: A Mini Self-Study

Dehydration & POTS: A Mini Self-Study

This weekend I conducted a mini self-study. It included taking about a hundred more pulse readings and just generally being more aware of what I noticed in my body. (I put all that mindfulness practice from my meditation sessions to use and it really helped me evaluate where I am now.)

I’m Not Lazy, I’m Practicing Self-Care

Who am I trying to convince? Why, myself, of course.

My heart rate lowers immediately when I’m lying down, and I feel so much better. Until I started tracking my heart rate, I didn’t fully understand the connection between the position of my body and how good or terrible I felt.

So with the exception of getting up to pee and grabbing the occasional Gatorade from the kitchen, I watched TNT’s Star Wars marathon from bed this weekend. I can’t live like that all the time, of course, but after two days of simply accepting my limitations, I felt better.

All of that’s gone now that it’s Monday and I have a paycheck to earn, but I feel like I’ve found a secret weapon for feeling better.

I Always Wake Up Feeling Dehydrated

gatorade

This has been going on for a while and increasing in severity. Dry eyes, mouth, sinuses, skin. My lips are permanently chapped. Even my ears are dried out and itchy. Dehydration affects heart rate, so by the time I wake up in the morning, my heart rate is revved up (130-140 bpm), and I have a severe headache.

I had assumed all this dehydration was a side effect of the nortriptyline, so I stopped taking it for a few days to evaluate. The drug might be worsening things, but I feel dehydrated even when I don’t take it. What’s more, skipping it leads to my IBS creeping back. Not. Acceptable. I’m back to taking 10mg most nights.

On the In Sickness + In Health podcast, I heard that patients diagnosed with POTS drink Gatorade to ease their symptoms. My POTS suspicions coupled with my feeling dehydrated all the time got me to thinking that I should give the drink a try.

And, Yay! Gatorade makes me feel better too, sort of. Adding about 16 ounces a day lowers my heart rate by about 10-15 bpm across the board (though the 30 bpm difference between lying down and standing up remains). That means I’m not living my entire day in the target heart rate zone for aerobic exercise. Which makes me feel less exhausted, as long as I don’t try to do anything too bold (like live my life like I did before.)

All of the drinking comes with a price too: frequent urination. Every 30 minutes I’m up peeing, and I’m also up in the middle of the night. Which is bad since I have trouble sleeping even without nature calling at 3 am.

There are no solutions with chronic illness. Only tradeoffs.

One last thing about the dehydration; I am using Blink gel tears three or four times a day. That seems excessive, but maybe it’s not really for someone whose job is staring at a computer screen all day. My eye doctor first told me to use them in, I don’t know, 2011? She said that I had dry eyes and some scratches. But now I feel like I need them way more. Because the eyes and nose and sinuses are all connected, the tears actually sooth my nose and sinus irritation too.

I haven’t been to an eye doctor since we moved to Illinois three years ago. I should probably set that up. But getting dressed and leaving the house is so stinking hard.

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