Brain Tumor

Did Someone Order a Chaplain?

Emily SuessLeave a comment

hospital signLet’s see. So far today I have:

  • Filled out paperwork for the allergist’s office
  • Emptied the dishwasher
  • Cooked macaroni and cheese
  • Paid some bills
  • Written a few thank you notes

It might not seem like much. In fact, compared to my pre-cancer lifestyle, it doesn’t seem like much. But I’m doing what I can, trying to take more steps without my mobility devices, and looking for ways to take some of the domestic burden off of Dan. (Dude’s got his own chronic illness to contend with.)

We’re a real pair.

So, while taking a breather in my new recliner this morning, I recalled a vivid memory of my days at Barnes-Jewish Hospital back in February.

Not sure what brought it to mind, other than that I have a lot of time to contemplate and reflect these days. Weird stuff pops into my brain, typically unsolicited. (And the stuff I actually want to remember? Nowhere to be found.)

Anyway. Several times during my visit, I was asked by hospital staff if I wanted the hospital to address any religious or spiritual concerns on my behalf. Each time I was asked, I told them no. So I was surprised to awake one day from a drug-induced nap to find a hospital chaplain standing at the foot of my bed.

He smiled and offered an introduction. Immediately, I recoiled. I told them no, I thought to myself. Do not want. I don’t need last rites. I am not dying. YOU’VE GOT THE WRONG HOSPITAL BED, MOTHERFUCKER.

My defiance is genuine, and thankfully well-contained. He was just letting me know who he was, and had no intention of being pushy or nosy. When he finished, he stepped over to my roomie’s bed and asked her if she would like him to pray with her.

She said yes.

Brain Tumor

Inclined to Recline

Emily SuessLeave a comment

On Wednesday, a new recliner arrived at our home via UPS. Believe it or not, I have not had a recliner in my home since something like 2003. That was three cities and a whole state ago. Sheesh.

For weeks, I’d been spending too many waking hours in bed or trying to get comfortable and see the TV from the living room couch. My neck and shoulder pain was only increasing, and I was depressed. Spending hours upon hours in bed made me feel sad and incapable.

Power ReclinerSo, I used some money from my YouCaring campaign to purchase this power recliner from one of those online stores always being advertised on HGTV.

I didn’t have to leave the house to shop for it. (Going out in public is hard—harder than it was when I was getting daily radiation treatments, but I’m also a little skittish about the possibility of getting “normal” sick because the dexamethasone “may lower my body’s ability to fight of infection.” So I stay home except for the odd trip to the ER.)

The chair basically just snapped together. And it’s comfortable. And my cat Izzy likes to join me for afternoon naps.

Now I can sit by the picture window in the living room and watch the birds and squirrels at the feeder and bath. When I lie back, I can look up and watch clouds float by. And when we’re binge watching Orange is the New Black, I can watch relatively pain free.

It’s nice.

***

Speaking of the dexamethasone, I’ve been back on it for about a week now. I generally feel better, but I’m not thrilled about regrowing unnatural facial hair. (If I’m honest, probably another reason I stay home these days.) They might be wispy and blond chin hairs, but they light up like the sun glistening on Lake Michigan when exposed to daylight.

The more important thing, though, is that I am eating and drinking again like a normal person. Everything tastes delicious on dexamethasone. Everything.

***

Thursday night I signed us up for health insurance through the ACA exchange. We still don’t officially have health insurance. They have my money, but BCBS of Illinois has things “under review.” It really, really sucks losing your job because you’re sick with brain cancer and losing your health insurance at the same time.

I know that, at least for now, I’m not supposed to be declined insurance for a pre-existing condition, but I don’t trust insurance companies. They’ve got ways of wriggling out of their responsibilities. And I am quite aware that should something not go in my favor, I have next to no resources to fight them.

What bearing should a person’s employment have on their ability to access healthcare? Why should someone with so much health-related stress be forced to navigate a ridiculous bureaucracy in addition to fretting about paying the mortgage without stable income?

I have to stop thinking about it or I stress too much for my own good.

***

While there’s plenty for me to worry about, I do want you to know that I’m more optimistic than this post lets on. I can’t stand the thought of people worrying about me too much.

Thanks to all who have donated and promoted my fundraiser, sent cheerful gifts, messaged me with words of encouragement, and who check in on me when I get a little quiet.

Enjoy your weekend!

 

Brain Tumor

Yes, I’m Still Kickin’ (Sort Of)

Emily Suess1 Comment

Last week I went to the ER. Not once, but twice. I was severely dehydrated because I couldn’t stop puking. On the second day, while lying in the hospital bed, Dan was sitting beside me. We didn’t really know what was wrong, but we knew that I was in bad shape.

I swear to God Dan’s eyes got a little blurry with tears as we speculated what could be going wrong. I was scared as shit too.

About seven days earlier, I’d finished up my last Decadron (dexamethasone) and was confident that withdrawal was severely messing my shit up, but the big scary question in front of us was whether or not coming off that steroid was causing brain swelling.

Long story really, really short: it was not.

It was run-of-the-mill withdrawals I was experiencing, but I’d put off going to the doctor for so long (because my health insurance and job were terminated two weeks earlier) that I was not just dehydrated, I was severely dehydrated.

I could just barely get myself to the toilet. I had’t showered in an entire week. And everything I tried to eat and every medicine I tried to take returned to the outside of my body via my mouth in a most violent fashion.

So I’m recovering, but still pretty damn low on energy. More later, but no promises when.

 

Brain Tumor

Temodar is the Work of Satan

Emily Suess5 Comments

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.

 

Brain Tumor

Granny Walkers and Comfort Food

Emily Suess4 Comments

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 cheeseSo 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.

Brain Tumor

Malignant, Malignant, Malignant

Emily Suess3 Comments

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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.

Brain Tumor

My Brain Tumor MRI Results

Emily Suess8 Comments

mriI 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.

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