Temodar is the Work of Satan

Temodar is the Work of Satan

Last week, I spent about 72 hours wearing pajama pants that I’d puked on.

I mean, Dan helped me spot clean them, but I was unable to change my clothes because I was so weak. That’s how bad my experience was with my first day of the maintenance Temodar (that’s the name of my oral chemo). I took my Zofran, then took the 320mg of Temodar about 30 minutes later and everything was fine.

Until it wasn’t.

Four hours after I took the pills, I tried to get myself to the bathroom. But I was surprised to find that I couldn’t even stand on my own. Dan had to get me there (and, unfortunately, had to lift me off the toilet when it was time). Then I broke out in the infamous rash, only it was worse times about a billion.

Then I tossed my cookies.

Then I couldn’t see.

Then sounds got muffled.

Then I tossed more cookies.

Then I went to bed.

It was scary, I’m not going to lie.

Dan checked on me every hour, taking my temperature. It peaked at about 100.7. (At 101.5 I have been instructed to visit the nearest ER.) We pondered going to the ER anyway, but once my temperature dropped, we figured we were out of the woods.

Plus there was still the matter of me not being strong enough to walk. I didn’t figure we could get me in the car, and there was no way in hell I was paying for an ambulance ride.

I still don’t feel right, and my oncologist and his nurse are trying to figure out what’s next. Needless to say, me and Temodar are so over.

I’m a week out, and I still can’t stand the sight or smell of food.

Granny Walkers and Comfort Food

Granny Walkers and Comfort Food

I had to bring the walker back out today. It’s frustrating, but kind of expected. I’ve taken another step towards coming of the dexamethasone—down from one milligram a day to a half milligram a day.

If you Google “dexamethasone taper” and hit the patient forums that pop up in the results, you’ll see it’s pretty common for the taper to make people feel like hell.

I keep finding out how unexceptional I am in terms of side effects.

Congratulations, me.  And all of this right before I start my maintenance chemo tomorrow morning.

If there’s one thing I’ve learned since February, it’s that I’m not allowed to get completely over one stinky hell before stepping barefoot into a freshly steaming new one.

Anyway, my body is just one continuous muscle spasm right now, and it has been for a couple of days. I’ve tried the cyclobenzaprine I have left over, hot and cold packs, Icy Hot, bed rest, hot tea, meditation. Probably more stuff I can’t remember. All pretty much worthless for this particular problem. My medical cannabis gummies get me relaxed enough to sleep at night, but they are really, really dehydrating.

That’s something I’d like to point out, now that I’ve brought up the topic—marijuana’s great, but it’s not perfect. People who claim it is probably haven’t taken it for brain cancer.

kraft mac and cheese

So anyway, I’ve regressed to the point where Dan has to pretty much do everything for me again. These little setbacks don’t last forever, but they are so frustrating. As it turns out, I actually don’t like being waited on constantly or asking for help with ridiculously small things.

“Could you get me a Gatorade? And pour it in a glass? With ice? And a straw?’

Dan doesn’t mind. In fact, he’s made me Kraft Macaroni & Cheese three days straight. He even went out to buy the janky cheap stuff when we already had Kraft Deluxe in the pantry.

What can I say? My cravings are very specific these days. I want straight macaroni, not elbow. And I want neon orange cheese dust, not runny cheese product from a metallic pouch.

Because standards.

Malignant, Malignant, Malignant

Malignant, Malignant, Malignant

Yesterday was damp and rainy here in Urbana. As a result I was a miserable mess of swollen. Everywhere. My eyes were nearly shut. There were giant rolls of taut skin cascading down my neck. I couldn’t move my head, my arms, my legs. From about 6pm to bedtime, I was so miserable all I could do was lie in bed and watch MST3K on Netflix.

I was doing just that when I got a notification on my phone that my medical team at Washington University in St. Louis had added a new health record to my patient portal.

“Huh,” I thought, “better see what that is.”

I opened it up and there was a new diagnostic code and description sitting there:

malignant neoplasm of overlapping sites of brain

I told Dan about it through tears.

“But, we already knew…” he started to say.

“I know, but they wrote ‘malignant’ down. And I have to look at it.” I sniffled like a six-year-old who’d fallen off her bike and had to pick flecks of asphalt off her skinned knee.

See, I’ve had about two months to grow accustomed to hearing certain words. Words like tumor, cancer, chemotherapy, radiation… But malignant had never really been used, at least not in front of me. I hadn’t yet built up any emotional immunity to hearing or reading it.

So this is me starting the desensitization process.

My Brain Tumor MRI Results

My Brain Tumor MRI Results

I spent Monday through Wednesday this week in St. Louis for follow-up appointments. Here’s what was on the schedule:

  • Monday: First MRI following completion of my radiation therapy and chemo round one.
  • Tuesday: Follow-up with neurosurgeon regarding my progress recovering from brain surgery
  • Wednesday: Labs and appointments with my radiation oncologist and my medical oncologist.

The MRI

The scan itself was mostly okay. I had a couple of freak-out moments, but it had nothing to do with claustrophobia or scanxiety.

It was more PTSD-like in that the unmistakable clicking and buzzing sounds of the MRI machine sent me back to the early days of diagnosis and ER life.

A couple of tears might have rolled out the corners of my eyes. In all, I spent about 45 minutes inside the machine, nearly falling asleep toward the end.

The MRI Results

My doctors were all on the same page about the results—pleased that the MRI showed the brain tumor was “stabilized.” Meaning things weren’t worse. My radiation oncologist was the most excited, telling me “Congratulations!”

I should probably be happier about this than I am, but if I’m totally honest I am not overjoyed about “stabilized.” As a patient, you kind of want to hear something like, “It’s half the size it once was. Your progress defies the odds!”

Know what I mean? I already knew the damn thing was slow-growing when they guessed I’d been carrying it around in my head for years.

I was confident it wasn’t going to double in size since February. I also thought going through two months of awful surgery, diagnostic procedures, and cancer treatment was going to get me something more than “it hasn’t gotten any bigger.” You know?

Not that I’m ungrateful. Just an overachiever, I guess.

What’s Next

I start what we’re calling my maintenance chemo schedule as soon as I get the drugs. It’s a 28-day cycle where I take my chemo pill, Temodar, in the morning for 5 consecutive days, and then I have 23 days off. Next month, I do the same thing and so on.

Even though it’s just for 5 days at a time, I’m still a little concerned about how I’m going to handle things. The dosage (320 mg) is more than double the daily dosage I took earlier. The bold, underlined, all-caps text on my patient instruction page says:

DO NOT SKIP ZOFRAN BEFORE EACH DOSE OF MAINTENANCE TEMODAR EVEN IF YOU TOLERATED TEMODAR WELL DURING RADIATION.

So I’m guessing I might still need to keep my barf bags handy.

I don’t have another MRI for two months, but I do have to see my medical oncologist again next month.  From here, the doctor appointments are becoming less and less frequent. I don’t see the neurosurgeon until September or the radiation oncologist until July.

Support Emily with a one-time donation at paypal.me/EmilySuess

Woman Pays Into Safety Net for Two Decades, Still Begs Friends for Help

Woman Pays Into Safety Net for Two Decades, Still Begs Friends for Help

I missed a call from my hospital social worker on Friday. She’s been working with the makers of my chemotherapy pill (Merck) to see if I qualify for prescription payment assistance.

(I already paid the co-pay amount for the first round of pills out of pocket, because I wanted to start treatment as soon as possible and be done with it as soon as possible. Brain tumors, no matter how slow-growing, don’t seem to me like something you just let sit around for weeks unchecked.)

But you know what’s even more shitty? Chemotherapy co-pays on my insurance plan are not like co-pays for typical drugs. They’re more expensive.

“Oh? You want to live? Well, dear, that costs extra.

“Didn’t you see the asterisk on your plan? No, not that one. That one either. No, the other one.”

I’m taking a generic for Temodar, if any of you tumor-havers want to compare notes.

Anyway, I have no idea what the final decision is until I can speak with my social worker, but I’m guessing they’re not going to give me any assistance because I was making too much money at the time I applied for help. (Which basically just means employed.)

So, tomorrow morning, I’ll call for confirmation of the drug assistance decisions, tell my social worker my short-term disability benefit has run out, and start a new conversation about applying for Social Security Disability.

Hot damn, I can’t wait to be judged by healthy assholes on the internet for the high crime of trying to keep my house while I fight a brain tumor that I must have done something to deserve, if, in fact, I didn’t actually give it to myself.

Just thinking about this stuff fills me with angst and dread.

If you’d like to contribute to my YouCaring campaign, or share it with people in your social networks, here’s the link: Help Emily Pay Medical Expenses for a Brain Tumor

Who Needs a Stinking Income Anyway

Who Needs a Stinking Income Anyway

Ever since my congressional representative, Rodney Davis, voted in favor of the disgusting AHCA yesterday, I’ve been in a pretty foul mood. Like I need one more thing to worry about.

Then I woke up this morning, checked my bank notices, and realized I’d received my last paycheck from my employer until I am able to work again. (If that’s not scary enough, that paycheck was only half of my normal paycheck.) And I entered full-on panic and depression mode about three seconds later.

***

I had this thought back when I was a new hire at my employer in 2013 that perhaps I was a little older now and perhaps I couldn’t afford to be all nonchalant with my benefit selection. So I had them deduct some money for a short-term disability plan from my paycheck. That insurance covered me for a few months, but it’s already run out.

Time flies when you’re having fun learning to walk all over again.

***

Anyway, even though I knew this day was in my future, I’d been avoiding obsessing over it. With things like this, there’s no planning—only worrying. And well-intentioned people kept telling me: You just have one job right now.

Yeah! I thought. Get better. That’s your only job. I went along with it. I mean it was and is kind of true. Brain tumors and their complications are not exactly a side gig.

But I can’t really ignore this no-income thing anymore.

So, after I saw the meagerly payment that posted to my checking account, I started my impending financial crisis meltdown.

I also started the Social Security Administration’s online application for disability. And then I did something I haven’t done in years; I took a nap as a coping mechanism.

Scanxiety is a Thing

scanxiety.pngI’ve had a difficult time getting to sleep the past couple of nights. I can’t really put my finger on just why; it’s just a general sense of anxiety.

There are unidentified beings throwing a dance party in the pit of my stomach. They’re drunk, puking Zima, and butt-dialing my brain saying things like, “Have you tried worrying about this yet?”

Right now I’m leaning toward the source of my uneasiness being scanxiety about next week’s appointments in St. Louis.

I will have my first post-treatment MRI then. Though I’ve been warned the scan results are to determine a “new baseline” and are not for comparison, I really, really want to know that the tumor is already smaller.

I know I’m in for more rounds of chemo, regardless of the story the new MRIs tell, but if the doctors think that more radiation is called for, I might lose it. I already rang the bell. That means I’m done.

Done, done.

Right?

You can’t ring the bell, take home your radiation mask, and then have to do it again. That’s just not right.

Fibromyalgia Misdiagnosis: Surprise, It’s a Brain Tumor

Fibromyalgia Misdiagnosis: Surprise, It’s a Brain Tumor

Whew! The past 72 hours have been utter shit for me. I’d explain why, but I’m going to tap my Tumor! sign and leave it at that. There’s something else I want to write about now: my chronic illness and my fibromyalgia misdiagnosis.

Did you know that May is Brain Tumor Awareness Month and Fibromyalgia Awareness Month? (Actually, May is the awareness month for a lot of chronic illnesses, but these two things in particular have been just about my entire life since October 2014, so they are getting top billing on my blog on this lovely May Day.)

Fibromyalgia: Misdiagnosis?

I mentioned in a previous blog post that I believe fibromyalgia was a misdiagnosis for me as opposed to a comorbidity. As I have discussed many times with family and friends, I am mostly overjoyed to have an accurate diagnosis and a real plan to get better.

However.

There’s a special kind of emotional baggage I picked up on this chronic pain path, and the only way I know to heal from it is to put it out in the universe by sharing it on my blog—where my family, friends, and even complete strangers get to read some of my most intimate thoughts.

Article: Ultimate Guide to Helping a Loved One with Brain Cancer

I have no qualms about oversharing when it comes to my well-being, in case that wasn’t already abundantly clear.

So here’s the deal. On February 2, 2017 I had fibromyalgia. Then on February 3, 2017 I officially had a six-centimeter tumor on my brain stem.

On February 2 the general consensus among my numerous doctors was that I wasn’t eating right or exercising enough. If I were, I’d experience improvement and maybe even remission of some of my symptoms.

On February 3 the general consensus among my doctors was “Holy, shit. You shouldn’t be able to do that” or “No wonder your body can’t walk, breathe, sleep, digest, or stabilize your heart rate and blood pressure like a person without a brain tumor.”

At first I was like, damn I am one tough cookie.

And then I was like, wait just a goddamn minute here.

Misdiagnosis Bottom Line: I felt the same!

I want to point out that from a purely physical experience, there was no discernible difference for me between February 2 to February 3*—even though in that 24 hours, my list of symptoms was suddenly more than validated. I wasn’t just making stuff up or being stubborn about diet and exercise, and it the fibromyalgia misdiagnosis was total crap.

Medical professionals (not speaking of specific doctors right now, just medical pros as a whole-ass community) who were previously dismissive of my chronic pain symptoms were suddenly losing their shit over how believable my reports of chronic pain and disability were.

And this is a point that I really want to drive home, so I’m going to repeat it:

The physical experience of living inside this tired, broken body didn’t change one iota for me in that time. All that changed was who believed me.

And somehow I went from being a whining, complaining exaggerator with two X-chromosomes to a human being who really had been experiencing unrelenting level-eight pain for TWO AND A HALF YEARS.

(I am so angry thinking about it! I might get over it one day, but not this day!)

charlie_brown_pain_scale

(My Spoonie friends are grabbing the box of tissues right now. They are empathizing so hard.)

(Others might not quite understand just how much emotional damage was done. That’s okay.)

It makes me angry that I wasn’t taken seriously. It makes me sad that treatment (and possibly relief) could have come just a little bit sooner for me, but instead I spent months homebound.

The lazy-ass rheumatologist that was a little too eager to diagnose me with fibromyalgia in 2014 fought me over my symptoms and complaints of weight gain, insisting that I wasn’t exercising enough.

When I told him that I’d been tracking my steps, walking to and from work, walking three laps at the park after work every night, and using my FitDesk and hand weights at home and was experiencing physical decline instead of improvement, his response was “Well, you need to start out slower and build up.”

SERIOUSLY?

That’s all the motherfucker had. I must have been doing it wrong. Could be that fibromyalgia was a misdiagnosis.

Top Pick
Screenshot_20240407_194901_Amazon-Shopping

Amazon Basic Care Medicated Cold Hot 5% Menthol Patch

$14.64

7.87” x 3.93”, 15-Count Box (Previously HealthWise)

Now that I have proof of this brain tumor (grade 2 Astrocytoma, can’t remember if I mentioned that) and I am recovering from surgery, chemotherapy, and radiation therapy, I hear admonishments not to “overdo” when I tell the doctors and nurses that I’m walking without mobility aids or putting in 30 minutes (on the lowest resistance setting, for the love of god) on my FitDesk as I try to recover.

If you don’t immediately know why both of these experiences fill me with boiling rage, I’ll tell you: NEITHER VALIDATES THAT I KNOW THE PHYSICAL LIMITS OF MY OWN DAMN BODY.

And yeah, the anger that comes with that weasels its way into my waking hours from time to time. You got a problem with that?


*I implore you to think about this before you accuse someone with a fibromylagia (misdiagnosis or diagnosis) of being an attention-seeker, a pill popper, or a conjurer of fake maladies. It hurts us all, and keeps the counterproductive stigma alive.

This website contains affiliate links.

Pin It on Pinterest