Brain Tumor

Emily Answers Your Brain Tumor Related FAQs

recoveryOMG! I just heard. How are you?

The answer to this one changes every 5 to 30 seconds. You know that graphic about recovery not being a straight line? That is applicable to just about everything in life, and medical procedures are no exception. I’m glad to report that after 71 days away, I am at home in Urbana. The overall trend is toward “better and better” but I have my days where it seems like everything sucks and I’m taking steps backward. I’m not shy about griping during those moments. I promise to let you know when things are bad and I need a little cheerleading.

Are you done with radiation and chemotherapy?

Sort of? The radiation is done unless future MRIs indicate there’s a need to zap the tumor again. Chemotherapy and I are, as Ross might say, on a break. There will be more Temodar—brain cancer chemotherapy in convenient pill form—in my future, but it will only be once a week every month. (One week on, three weeks off, lather, rinse, repeat.)

I imagine that my body will tolerate that schedule much better than the initial chemotherapy regimen, which was every freaking day for five weeks. Right now, doctors are saying to expect to do the one-week-a-month plan for 6 to 12 more months. Actual duration will depend on how the tumor responds and how the rest of my body tolerates continued treatments. You know, my mileage may vary and stuff.

I want to help. What can I do?

  • Tell me jokes. Laughter is a great distraction.
  • Carry on about your business like things are normal. When someone tweets how miserable their allergies are making them feel, I am not thinking “Yeah, but I have cancer. Count your blessings.” Rather I am thinking, “Better you than me, sucker!”
  • Donate to my YouCaring fundraiser. But only if you can. My medical bills are piling up, and as of today (4/24/17) I’m preparing for an appeals battle with my health insurance provider. They have denied a claim that exceeds $100,000 for the genetic testing that determined the best treatment course for my tumor. I’m not adjusting my fundraising goal, however, until I know for sure I’ve been screwed. I could win the appeal. Right?

What about the Fibromylagia diagnosis?

It’s still on my medical records as a thing. But my opinion, knowing what I know now, is that the rheumatologist who diagnosed me with it in late 2014 was lazy and just fucking WRONG. My thoughts on this topic are pretty complex, however, and I plan to do a more in-depth post of my experience. For now, just know that if you troll or harass anyone diagnosed with fibro I will cut you. It’s real.

You went to St. Louis for treatment?

Yes, at the recommendation of my primary physician (I will praise her more in a future post) I went to Barnes-Jewish Hospital for formal diagnosis and treatment. The hospital campus includes Washington University Physicians and Siteman Cancer Center. And every one of the people I was in contact with there was absolutely phenomenal—ER admissions staff, nurses, doctors, transport staff, nurse assistants, more doctors, residents, interns, food and nutrition employees, housekeeping, valet staff, radiation oncology techs, MRI techs, CT techs. I am seriously getting a little teary thinking about how well I was treated and how much confidence I had in the people taking care of me. I don’t know any of their salaries, but I know that none of them are making what they are worth.

 

Fibromyalgia

Fibromyalgia Update: Iron, Sleep Study, Nexium

fibromyalgia quote.PNG

I haven’t been feeling well lately. I know, right? You are so surprised.

Thought I’d follow up with my progress in regards to the iron supplements and my fibromyalgia. Which is a pretty easy task, because there is no more progress to report. I’m still taking the supplements, and the burning in my legs and feet is less frequent. But the initial shot of energy and hope I had during that first week—hope that this was what was wrong with me—has all but completely fizzled.

I was anticipating a call from the sleep specialist this week to schedule the sleep study, but it didn’t happen. (The sleep study requires pre-auth from my insurance company, so I’m guessing there’s some negligence or outright denial of coverage on the part of my insurance provider.)

Whatever. I’m too drained to check on it. It’ll either happen or it won’t.

Nothing is happening as far as my getting into the MS Center at Illinois Neurological Institute either. My last move was to clarify whether my primary doctor’s office had simply put in a referral to my insurance (which is not required) or whether they had communicated with INI to start transferring my records to them (which is required).

Of course, my primary doctor’s office hasn’t responded to that question, which I asked nearly two weeks ago. I’m feeling more and more like my doctor and the nurse practitioner there just want me to wait for another scary episode and go to emergency. Proactive healthcare in this country is a fucking farce. It essentially consists of flu shots and colonoscopies after age 50.

If there’s one bright spot, it’s that I haven’t taken Nexium in 11 days, because I haven’t needed it. Doing without it hasn’t completely stopped my dizziness, but it’s lower. I feel like falling isn’t as likely right now. So there’s that.

 

Fibromyalgia

More Medical Tests: Could I Have Sleep Apnea?

sleep-studyThree days ago, I was so close to canceling my sleep consult appointment. Like finger-on-the-green-call-icon close.

I generally face anxiety for three days prior to any scheduled outing. It’s not that I have genuine phobias about people or doctors or medical facilities. It’s just that it’s so hard. I mean, have we talked about how I get dizzy trying to brush my teeth yet? So, yeah. I get worked up about errand and appointment struggles days before I actually have to do them.

I didn’t cancel the appointment though—despite fretting it would be another dead end and waste of spoons—and I’m mostly glad I didn’t.

For one thing, when we got to the parking garage elevators, there were two hospital wheelchairs waiting. I was almost giddy; thought I’d have to make it all the way to the main lobby before landing one. But there was a red one and a blue one right in front of me. The wheelchair version of Take a Penny, Leave a Penny.

“Dan, will you push me in one of these?”

“Hop in!”

It was actually kind of fun. Like back in the day when Dan would take the doors off his Jeep and drive us in circles around the roundabout at the end of our street.

Instead of my usual doc visit blood pressure (in the area of 140/90-something), I was a reasonably stressed 126/88.

***

The nurse practitioner I saw today is recommending me for the on-site sleep study. I don’t know when that will happen yet, because insurance and pre-authorization and blah, blah, blah. But she was optimistic the first study could happen within the next month or so.

Parts of the Sleep Study

  • Initial Consult (Did that today.)
  • Sleep Study 1: Stay overnight hooked up to wires to determine if I have apnea and or RLS/limb movement.
  • Sleep Study 2: Happens if Study 1 determines I have apnea. They’ll fit me for a CPAP and document whether it’s helping.
  • Follow-up Consult

***

 My fatigue has gone from a 10 to about an 8—which is still shitty, but any improvement is welcome when you’re chronic—and that’s improved my mood. I even had a positive thought: What if I do have sleep apnea and actually getting oxygen through my airways at night fixes everything?

Time will tell, I guess.

Fibromyalgia

Watching Shit Burn

house-on-fire
Not My House. Just Thought It Looked Dramatic.

Last night I had all the anxiety. All of it.

Will I have to go to the ER before I get my appointment at the MS Center? How will they get my records before I’m an actual patient? Will they arrive and get lost because no one knows who I am or why they’re being sent?

Who are you kidding, self? No one is even working on your records.

Should I keep my sleep consult appointment on Wednesday? I already have to lean on the counter just to brush my teeth.  I don’t want to walk from the parking garage to the doctor’s office. I’m not sure I can do it, whether I want to or not.

I feel like I can’t breathe.

What if it is MS?

What if it’s not MS?

What if I don’t ever get better?

 

***

Last night Dan was working on a little project for me: removing, washing, drying, and replacing the covers we keep on our living room furniture to protect the upholstery from Boomer and Izzy.

Putting them back on required moving the couch and love seat. At one point he bumped the lamp on the sofa table, knocking it to the floor. The shade came off, the bulb broke. And then… the broken light bulb started smoking.

“I need you to unplug the lamp!” Dan said.

“OK!” I was sitting right next to the power strip where it was plugged in, but I couldn’t reach it. I made efforts to get out of my seat. I grunted. I rocked myself forward trying to use momentum to get me off the couch, knowing that once I was upright, I’d still have to turn 90 degrees and recover my balance. Then I’d have to bend over and, using my weak arms, try to pull the lamp cord out of the outlet.

“Fuck. Nevermind, I’ll get it.”

I had only managed to scoot myself closer to the edge of my seat. I wasn’t anywhere close to standing when Dan realized it would be faster for him to get up off the floor and walk over to the outlet.

Crisis averted. Nothing caught on fire. But I was smacked by the depressing reality that I can’t do anything and I certainly can’t do anything quickly.

I’m officially sick and a burden.

Fibromyalgia

A Different Kind of Meltdown: Heat and Fatigue

hot-bath
LIES!!!

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.

Nope.

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.

“Help.”

***

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.”

Nope.

“What if…”

“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

Fibromyalgia

Good, Good, Good…Leg Vibrations

nanny-legs-muppet-babies

I woke up at 5:12 a.m. today with the uncontrollable urge to stretch my limbs. I stretched, and as usual my muscles all contracted at once, like a collective spasm. It’s frustrating and not at all therapeutic like you’d think a wake-up stretch should be.

But this is normal for me now, and most of the time it leads to a charlie horse style cramp at the base of my neck. That clenching is always followed by a pulsing and whooshing of blood in my head that gives me an intense headache. I’ve never actually timed it, but if I had to guess the headache lasts anywhere between 5 and 15 seconds. When the pulsing calms, the headache leaves too.

That lovely little experience is then followed by what I call leg vibrations. My legs look fine, but inside it feels like they’re buzzing or shaking very rapidly. If I could draw, my artistic representation of the experience would look blurry, like a tine on a tuning fork that’s just been whacked.

After several minutes the vibrations quit. This morning, for instance, my left leg wrapped up its shenanigans just a minute or so earlier than my right leg. While I waited for the odd sensations to dissipate, I had the thought that I should log these things in my Fibro Mapp app.

So I did.

While the vibrations are weird and it’s annoying that they sometimes wake me up from sleep, they don’t hurt. That has made them a back-burner symptom for me. But since I’ve been Googling everything related to multiple sclerosis lately, I was like “Why not see if this could be connected too?”

Leg vibrations are totally a thing.

MS isn’t the only explanation, of course. And I do wonder if my nortriptyline prescription could be a culprit. Even though I’m on the lowest possible dose, it can cause some MS-like symptoms according to Physician’s Desk Reference. That alone isn’t enough for me to bail on a potential MRI though, because, plenty of my nerve symptoms predate my starting nortriptyline in July.

I’m not sure of anything. Basically just thinking out loud here, because I got notice from my primary doctor’s office yesterday that she has already sent the referral for me to go to the MS Center at Illinois Neurological Institute in Peoria. Consequently, I’ve kicked up my overthinking habit a notch or two as I wonder if the hour-and-a-half drive one way and all the subsequent visits and hassles will be worth spending my precious, precious spoons.

 

 

Fibromyalgia

Why I Want to See an MS Doctor, Part 4

fibromyalgia-memeYes, I realize that I’ve pondered a pretty lengthy list of possible diseases and conditions in the past 24 months or so, including rheumatoid arthritis, Sjorgren’s, lupus, myasthenia gravis, celiac disease, small bowel bacteria overgrowth, POTS (I still feel like autonomic dysfunction is a thing for me, I have just stopped tracking my pulse for my own sanity), and others I can’t remember.

And, yes, now I’m going on about multiple sclerosis, even though I already have a fibro diagnosis.

It’s okay if you’re rolling your eyes at me right now. I’m rolling my eyes at myself.

Each time a medical professional or friend or relative says something to suggest I might be a hypochondriac, I count to five and tell myself: You don’t know what it’s like to be them; they don’t know what it’s like to be you. Then I move on to the next thing and ask, “But have we ruled out this thing yet?”

***

Unless you’re chronically sick too, you probably have no idea just how reasonable it is to question or even believe you have something it turns out you don’t have. I mean, with so much symptom overlap among all of these named autoimmune illnesses…

Ugh. It’s not like I’m researching all this stuff for the thrill of it. I’m doing it because no one else will.

***

Inevitably someone (usually a medical professional) will try to get me to accept that I have fibromyalgia and just move on. I try, I promise I do. But the acceptance never lasts long, and it doesn’t help that others with fibromyalgia say to me, “What the hell?! I have never experienced that symptom.”

For me, fibromyalgia is an undiagnosis*.

At first, it was a helpful way for me to talk about a handful of consistent symptoms without having to spell them all out every time I saw a new doctor. But now I tend to view it as a diagnostic crutch.

When I talk about things that are happening to me, they are dismissed as things that “happen sometimes” with fibromyalgia.

On a related note, why aren’t more doctors curious? All the ones I’ve dealt with—even the “good” ones—pretend, at least to some degree, that they’ve got it all sorted out.


*Operative words here are “for me.” I believe people when they say they hurt and are fatigued; but I don’t think fibro explains enough of my symptoms. Most days I suspect it’s a misdiagnosis or that something else is happening alongside it.