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.”
Every time I think I’ve hit Fatigue Level: Ultimate™, my body surprises me. And the fatigue gets worse.
Fatigue is hard to describe and even harder for those who don’t experience it to understand.
I remember when I was a non-runner, pretending to be a runner and training for 5Ks. I’d jog for 20 minutes without walking, bend over with my hands on my knees, and huff and puff for a few seconds and think that was fatigue.
But after a minute or two I’d catch my breath and be pretty much recovered. I could climb in my Corolla and drive myself home from the park. I could make dinner, do some laundry, write a blog post or two, go to bed, and then get up, shower, and work an eight-hour day. Repeat three or four times a week.
Not now, baby.
Right now, fatigue for me is:
Praying I can make it to the bed without fainting after a shower
Being unable to even ask Dan to grab my laptop for me, talking is too much work
Sleeping 12 hours at night and needing a nap midday
Getting winded walking from the living room to the bathroom
Having to sit on my rollator while waiting on the electric kettle
You know, it’s funny (in a non-humorous kind of way). I remember how excited I was to be able to stand the entire time I brushed my teeth in February. I was in the hospital awaiting tests and, ultimately, brain surgery. The doctors had just given me something like 10 mg of dexamethasone, and I felt invincible.
“I feel amazing,” I told the doc who would later slice my head open. “My sinuses are even clear.” I inhaled really deeply. “I didn’t need help with my shower. I DIDN’T HAVE TO LEAN ON THE COUNTER WHILE I BRUSHED MY TEETH THIS MORNING.”
He laughed at me, but not cruelly.
Well, now I’m back to leaning on the bathroom counter while I brush my teeth. I can’t stand upright for even two minutes. I’m frankly a little scared that I’m going to revert to pre-surgery disability and spend the rest of my life there.
But it doesn’t really help to worry about that yet, I know.
There are lots of things contributing to my fatigue. First of all, I’m fat. At 238 pounds, I am asking more of my muscles than I ever have in my life. I put on about 60 of those pounds in about 6 months. So I didn’t build up any gradual strength to support my own weight, like I might have if it’d taken me a year or two.
To reduce my weight, I’m weaning off the dexamethasone, but that leaves me extremely tired and achy. My weight is dropping, but oh so slowly. It’s so unfair. I’m trying to lose the pounds without the ability to exercise. How is that going to result in anything but failure?
And then there’s chemotherapy. Fucking chemo.
Last night I got my lab results from this week’s blood work. There’s nothing too scary in the numbers, but I continue to see a decline in all things red blood cell related. Basically, the shit’s making me anemic, on top of my already significant list of woes.
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.
My parents have a garden tub, so while we were visiting them at Christmas I decided I was going to take full advantage. Traveling can be so stressful. That’s one of the reasons we stopped at Walgreen’s the day before leaving Urbana; I wanted to pick up a bag of Dr. Teal’s Epsom salts to soothe my achy muscles.
I was in the tub for about 15 minutes when I was overcome with fatigue. The bath had worked to soothe the muscles in my legs a little too well. And by that I mean I couldn’t get myself out of the tub.
I drained the water completely and tried to stand, but I couldn’t even get my feet planted under me, let alone stand on them. Next I tried the grab bar. Maybe a combination of standing and pulling with my arms would do the trick.
And being stuck in the bathtub was getting me all panicky, which would only undo the relaxation I was trying to achieve. I grabbed my cell phone and texted Dan, who was reading in the living room.
That wasn’t the first time I’d tried to take a bath and been unable to get out of the damn thing myself. A couple of months earlier, it had happened at home.
We have a terrible old bathroom with no grab bars and shower doors that are decent enough to keep me steady, but no way is there any chance in hell they’d hold up to me trying to pull myself up with them.
Dan tried a couple of different methods. “Here, grab my hands and I’ll pull.”
“That’s not going to work.” I started tearing up and my chin quivered and got pocked with pout dimples. I tried to take deep breaths to ward of panic and hyperventilation, but I was so drained and fatigued I couldn’t even suck in a big breath. I was hunched over, without even the strength to straighten my spine.
“There’s a way to do this,” I said, “I just need to think how we can get me out of here without breaking me or you, or tearing out the shower doors.”
After a few minutes, I had it. Dan stood behind me in the tub, hooked his arms under my pits, and lifted. Once my legs were under me, I could stand on them. (Though my knees had to be locked in hyperextension to keep me from crumpling.)
Before I got in the bath at Mom and Dad’s, I told Dan, “Keep your phone handy. I might need a rescue crane.”
I already knew that people who have multiple sclerosis (MS) need to avoid the heat. So—you guessed it—I went Googling. Back in the day, doctors would actually use a hot bath test to diagnose MS! Holy shit!
“In the 19th and early 20th centuries, the effects of heat on people with MS were used in the diagnosis of the condition. The hot bath test involved lying in a bath of warm water. If this caused or worsened neurological symptoms, it was taken as evidence that the person had multiple sclerosis.”
Most of what I’ve read says that the heat from the bath causes a temporary worsening of symptoms, but someone in a forum mentioned the debilitating effects could become permanent. Um, even if it’s a gross exaggeration of the facts, no more baths for me.
This heat intolerance thing may also explain why I can just barely function after a shower and have to lie down on my bed for at least 30 minutes
Something about sitting in a chair while someone combs out my tangles switches my confessional switch. I told her that Dan and I had recently discussed me going back to a neurologist—someone who specializes in MS—to ask some more questions about ruling it out.
She thought it was a good idea. “Do you remember John W.?”
“Our old neighbor? Sure.”
“He’d come home from work, and walking from the car to the front door, he’d walk just like you do now.”
“Huh, really.” I envisioned him walking up his driveway. I could see the lilted gait, but wasn’t sure if I was recalling actual history or projecting my own walk onto a childhood memory. “I didn’t know he had MS.”
“And you remember me telling you about the wife of one of dad’s cousins that I chatted with at the last family reunion? I was telling her about you. You walk like her too, by the way. She said, ‘that is exactly what happened to me before I was diagnosed.’
“And,” she added, “when I was doing hair at Phyllis’s, I had a client with MS. Some days she could come to the salon, and some days she couldn’t. On the days she couldn’t, I’d go to her house. Anyway, she reached out to grab walls and chairs and things for stability, just like you do.”
She finished up with the scissors and switched on the blow dryer.
I follow a lot of Spoonies and disability activists on Twitter. Last week, someone shared a link to a video of a person with MS walking.
I watched it several times. The hesitation and deliberation in her shuffle. The way she reaches out for the branches as she approaches them. The way it seems like that one leg isn’t so much participating in the act of walking as it is catching up to the rest of her body.
THAT IS ME.
Sometimes people ask me why no one has ordered an MRI yet. I don’t know. Disbelief in my ability to accurately report my symptoms? Blindly trusting my fibromyalgia diagnosis? Money? Insurance?
My primary doctor did refer me to a neurologist last year. He tested my reflexes, then drew numbers on my foot to test for numbness. He smacked a tuning fork and then held it to a couple of areas, asking me if I could feel the vibrations. He watched me walk up and down a hallway.
“Why are you dragging your left foot like that?” the neuro asked me. I shrugged at him. “I don’t know.” At the time it didn’t seem absurd for him to be asking me that question. Now, I’m kicking myself for not retorting, “Why the fuck do you think I’m here, asshole?”
But he wasn’t a native English speaker, and his question might have been something more akin to “Is there something not in your records that would explain this?” Still, he didn’t seem concerned that my answer was “dunno.”
He said they could perform some kind of nerve test (like what they do for carpal tunnel, I can’t remember what it’s called) on my limbs, but that he was 99.9% sure it would come back negative and some people considered it painful. It was up to me if I wanted it.
I put it off for months. When I finally consented to have the testing, it came back negative, just like he thought it would. I considered it another dead end.
Last night I was reading MS patient stories online. Random people keep bringing MS up to me lately, and I can’t get it out of my head. One woman’s story triggered a memory from more than a decade ago.
2005. I was sitting on the couch watching TV when my vision went out, partially. There was a blind spot where an actor’s face should have been. I looked at other things around the room. I blinked. The black hole was still there.
It was freaking me out, so I got up to take a shower as a way of calming my anxiety. The vision loss continued, and I started experiencing a numbness and tingling in my arm. The shower poof felt odd on my forearm. It wasn’t totally numb, but it was not normal.
I was so freaked out by it all that the next morning I made an appointment with my doctor. At the time, I was pretty healthy. I only saw him for the occasional sinus infection or whatever. He didn’t really know me.
He listened to me describe my experience without saying too much. He had a nurse come in and test my blood sugar. Then he asked if there was any chance I could be pregnant and had me pee in a cup.
“Well, you’ve got a bladder infection,” he said. “But you’re not pregnant. I’m going to prescribe an antibiotic.”
He admitted he couldn’t explain the symptoms that had prompted me to make the visit in the first place. All he could offer me was, “I don’t think it’s a stroke.”
The encounter was far from consoling, but after a couple of days the symptoms had gone and I was over the anxiety.
I had pretty much forgotten this entire episode and so hadn’t considered it might be connected to my past two years of pain, fatigue, vertigo, and falls.