Brain Tumor · House and Home

Sink, Sasquatch, Sale

Dan’s out at Sam’s this morning buying a bag of whole bean coffee, a case of Coke Zero, and a bag of bird seed. You know, the essentials.

I had intended to go with him, but I woke up this morning with a migraine. And, instead of asking him to bring me some Gatorade to wash down my morning meds, I decided I was tough enough to do it myself.

I made it to the kitchen and back without falling, but the room was spinning out of control from dizziness by the time I made it back to the bedroom. By the time I’d flattened myself out on the bed and closed my eyes, the damage had been done. My vertigo and migraines and gag reflex must all be on the same circuit. I said goodbye to the medicine I’d just taken and waited for my vision to return to normal.

Early this morning while the sky was still dark, I had awoken from a dream that I’d received the results of another MRI and the doctors were telling me “there was another dot in my head.” I’m pretty confident that was just my brain’s way of processing the incoming migraine while I slept.  But that split second of consciousness where I thought I actually had a second brain tumor was pretty shitty.

So, instead of continuing my streak of feeling pretty good for a girl with brain cancer, I’m staying home today and taking it easy. It’s disappointing though. Dan and I were talking last night about the things we wanted to do today, and now I just can’t. I can, however, share some pictures with you of the stuff we did this past week while my parents were in town helping us with projects around the house.

Mom helped us with the landscaping out in front of the house. She laid the stone border and mulch and helped us hide the hideous gas meter by arranging my potted flowers and the landscaping rocks scattered around our yard. (This is actually not the final product, but it’s close.)

landscaping.jpg

Dad installed the kitchen sink we got for Christmas (to replace the cracked, leaking one). It wasn’t easy, either. He had to improvise to get it to work and there was talk that we might have to call a plumber.

kitchen sink.jpg

Mom drove me out to Country Arbors Nursery to get Dan’s birthday present. (His birthday isn’t for another couple of weeks, but I can’t drive and I wanted to surprise him.) Yes, that’s a three-foot-tall Sasquatch in my back yard. I named him Pipsquatch. We love him.

sasquatch.jpg

We also had a garage sale. It doesn’t take long for me to feel suffocated by too many things around the house. Particularly things we don’t want or use. What we didn’t sell, we loaded in my parents’ Jeep and took to Goodwill. Bonus: we dragged the old kitchen sink and a 25-cubic-foot, poop brown Lady Kenmore side-by-side refrigerator to the curb and a couple of scrappers hauled them both away for us. The weather was gorgeous.

garage sale

 

Brain Tumor

Emily’s Cancer Calendar: April

Another month in the books, and not a bad one either. I am starting to run low on stickers for the days I accomplish a thing, but now that I’m going on shopping excursions with Dan to our local Meijer, I can pick some new ones out.

I’m proud of my FitDesk time and mileage. But with the improved weather in May, I’m hoping to log a larger variety of activities–especially ones outdoors.

And now to get cracking on Brain Tumor Awareness Month.

Brain Tumor

Next Things

So I think I’m finally in a decent mental space to talk about my medical future. The thought of Brenda* doesnt get me miffed anymore, and lots of people are asking me “what’s next?”

As I mentioned earlier, I’m done with treatments. But did they work? And will there be more?

I’d say they worked, but it all depends on what your goal was. My goal was to be any kind of better than I used to be. And I can put my underwear on by myself again now, so … HUGE plus.

I knew from day 2 or 3 after diagnosis that removing the tumor was not an option. But in October my MRI revealed that the tumor had shrunk. That was a pleasant surprise, celebrated with dinner at Applebee’s.

Because my tumor is on the brain stem, the doctors said it was too dangerous to cut out. That left radiation and chemo therapy only. I’ve done one five-and-a-half week round of radiation with Temodar. And then six additional rounds of Gleostine.

Will there be more of either in my future? No idea. Can there be more in my future? I don’t honestly know. I’ve heard different things at various times about how a recurrence of cancer growth might be handled down the road and there are too many variables for me to know what’s likely to happen.

I haven’t asked my doctors any what-if questions either. It’s just not my style. I never asked them the life expectancy question. I never asked them what symptoms they assume I will have forever. Or what I might recover from. Basically because I know that all they can do is guess. And my long, tiresome medical journey to this point has taught me one thing:

I ain’t getting my panties all up in a wad over anyone’s best guess.

If I wake up tomorrow with normal nerve sensation in my left side, sweet! If I am suddenly cured of vertigo and nystagmus, w00t! If I don’t, oh well. I’ve already seen tons of effed-up days. What’s one more?

I’m not well enough to work right now, due to continued fatigue, brain fog, dizziness, and a handful of other symptoms. Do I want to work? Let me put it this way: I want to be well enough to work. I do not want to work until then. I slogged through several years of pain and misery with this tumor, and the thought of being forced back to work before I am ready sends my anxiety into uncharted territory.

So for now, I’m working on self-managed PT. Riding the FitDesk daily. Doing strength exercises. Contemplating whether we can physically manage and financially afford getting me to some PT/OT soon-ish.

The best part about where I am right now is that I’m not staring down a next dose of chemo. That alone does wonders for my body and my mental health.

Brain Tumor

Healthcare for My Enemies

Chances are if you’re friends with me on Facebook, you saw some drama go down on my page this weekend.

It started with me posting a few updates about my husband being denied the meds he needs. That post led to a woman telling me to “shut it.”

It was her opinion that because I wasn’t working, I had no justification for lamenting our situation (which is that I have brain cancer and my caregiver has a chronic illness that is going untreated, not because the condition is untreatable, but because our insurance–Medicaid–claims there is “insufficient medical necessity” for the medicine prescribed by his doctor).

That he doesn’t need the Humira for his psoriatic arthritis is an outright lie, however. Just look at this. Look. At. It.

Anyway, in discussing that we have been on Medicaid and SSDI openly online, countless trolls and bots have suggested, like this woman, that patients like me don’t deserve the health care we do get and have no right to complain about the health care we don’t get.

‘Mer’ka. Yeah!

This weekend was the first time, though, that someone I knew had told me that I specifically am unworthy of care or of demanding a certain standard of coverage for my husband.

***

At first I was seething with rage. Today that rage has given way to hurt and a complete disillusionment in all of humanity.

I spent two hours at the hospital getting IV fluids this afternoon. Alone with my thoughts for all of that time, I just kept wondering how many other people thought I shouldn’t be allowed to have the infusion. It was a depressing couple of hours for sure, and I haven’t yet completely pulled myself out of the funk. (I will in my own time, don’t worry.)

I used to think that people who cried “freeloader!” just couldn’t empathize with a nameless, faceless group of people they’d been told to hate. That if they knew someone who was sick, they would change their tune. Step up and demand humanity from their family, friends, neighbors, and political representatives.

Good night was I ever wrong.

***

When a friend of mine suggested I come up with something nice to say about this woman to help me shake off the dust and dirt, all I could think of was this:

“Well, if you’re looking for a friend who doesn’t coddle you with positivity just because you have brain cancer, Brenda’s* definitely your gal.”

I just want to say that everyone deserves good, affordable health care. Even Brenda. And words can’t express how begrudgingly I say that.

* Not her real name.

Brain Tumor

End of Treatment Recap

It’s been one week since the doctor told me I was done with chemotherapy. Here’s a recap of how I got this far. I’ll write more about what happens next and how I feel about everything in a future post.

February 2017:

  • Complete first ever MRI of brain and cervical spine.
  • Learn I have a brain tumor.
  • Rush to Barnes-Jewish Hospital in St. Louis that evening.
  • Have numerous tests and brain surgery to biopsy the tumor.
  • Spend something like 9 days in the hospital total.
  • Begin simultaneous radiation therapy and chemotherapy (Temodar) as an outpatient.

April 2017:

  • Finish 5 1/2 weeks of radiation and chemo with relatively few side effects.
  • Go back home to Urbana for a couple of weeks of rest before it’s time for 6 to 12 more monthly rounds of higher-dose chemo.

May 2017:

  • Take the first higher dose of Temodar.
  • Have severe reaction four hours later that dims my sight, muffles my hearing, turns my lips and fingers blue, makes me too weak to stand on my own, causes fever and chills and an unbearable rash, and makes me puke.
  • Lose my health insurance.

June 2017:

  • Try to go off the steroid dexamethasone, end up in ER.
  • Buy Obamacare.
  • See dermatologist about rash.
  • Have skin biopsied. (All clear.)

July 2017:

  • Declared allergic to my first-choice chemotherapy (Temodar).

August 2017:

  • Begin alternate chemotherapy (Gleostine) to be taken ever 6 to 8 weeks.

October 2017:

  • Learn that my tumor shrank. (Par-tay!)

November 2017:

  • Get too poor to buy Obamacare.
  • Sign up for Medicaid and SSDI.

January 2018:

  • Quit dexamethasone.
  • Begin inexplicable bout with permanent dehydration.
  • Lose weight.

February 2018:

  • Have another ER visit to replace fluids.
  • Spend four weeks bedridden.
  • Beg doctor for routine IV hydration.

March 2018:

  • Begin routine IV fluids.
  • Start feeling human again.
  • Watch platelets plummet and wait impatiently to be cleared for round 6 of chemo.
  • Take round 6. Finally.

April 2018:

  • Be decalred done with chemo after 6 rounds.
Brain Tumor

Emily’s Cancer Calendar

This is the calendar that sits on my FitDesk. I use it to track some of the day-to-day things I accomplish, because I need to remind myself that having cancer is a job. A hard one even.

The numbers inside the circles indicate how many minutes I spent actually riding the FitDesk that day. The stickers (yay stickers!) are for the days I ride, even if it’s a day that I can only muster five minutes. At the end of the month I total my exercise minutes and check the odometer for my total mileage. I also mark down the days I leave the house for doctor appointments, labs, fluids, etc. I note the days I take chemo, and what round it is.

I put a giant X on days I feel like shit and just can’t. And as I draw the X, I remind myself that rest is a to-do item as well. One thing that’s heartening is that I have fewer marked on the month of March than I do February.

 

Brain Tumor

The Joy of Itching

I couldn’t sleep last night, because my legs were itchy and tingly. They jump and jerk involuntarily when the neuropathy gets bad. And I toss and turn trying desperately to get them to chill out. What I feel is a lot like restless leg syndrome (RLS), except the severity of the sensations depend on where I am in the chemotherapy cycle. I’m smack dab in the middle of the worst part, having taken Round 6 on Tuesday night.

Sometimes I put large ice packs on my legs and that helps. But I was too cold for that last night. So at 2:00 in the morning, I got out of bed and jumped on my FitDesk exercise bike. I rode for 20 minutes—which is a long-ass time for me in the middle of treatments—until the uncontrollable urge to move around and scratch my legs subsided.

By some miracle I was able to fall asleep before the itching and prickling returned. But here I am this Easter morning wondering what would happen to me if I just biked all day. As a chronic pain aficionado, I’m here to tell you that chronic itching is infinitely worse than…well, anything. Chronic pain might depress you, but chronic itching will make you lose your bloody mind.

Anyway, that’s just the legs. They’re the worst, by far, but I itch everywhere. I scratch my face. My head. My neck. My arms. When I reach peak itching, it feels like there are bugs crawling on my forehead and hairs tickling my face. It’s a real joy, let me tell ya.