Brain Tumor · House and Home

Ouch

Stuff hurts.

I went to bed yesterday at like 7:00 p.m., and then I woke up this morning at about 4 a.m. That’s a lot of sleep, even for someone with a brain tumor.

chocolate-factory-blueberries.jpgI go through these periods (that I think are weather-related) where everything swells up and I can barely move. If I were blue, you could cast me in the next Willy Wonka movie.

Imagine being this swollen and trying to bend over and pick something up off the floor. Or trying to roll over in bed.

Ain’t happenin’.

Anyway, last night during all that sleep, I had a really distressing dream. I was at a taco bar trying to grab some lunch, and instead of flour tortillas, this place had hamburger buns.

Night. Mare.

***

Before the hellish pain started this weekend, I had intended to write an upbeat post about all the nice things that happened last week. I’m a little too exhausted for much more in the way of writing, but I do have some pics to share of a few of the things that made my week, including: a blueberry buckle I made from a recipe on Pinterest, Milwaukee Summerfest socks sent by family, and the second zucchini from Dan’s garden this year that made the best zucchini lasagna in the world.

 

Brain Tumor · Medical Cannabis

Gleostine: Round 1, Part 1

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.

Brain Tumor

My New Chemo: Gleostine

gleostine chemotherapy

“I know what I want for dinner tonight,” I told Dan. “I want the pulled pork nachos from Hickory River.”

I’m gearing up to take the first dose of my new chemo pill tonight, and preparing for the worst by indulging in a favorite meal. There’s no telling how long it might be before I like food again.

And it might all be totally fine. I could tolerate this chemo very well, and I hope I do. But that doesn’t mean I’m willing to risk it by eating sad food for dinner tonight.

Related: my online activity might be negligible the next 48 hours or so. Or it might be fine. I’m just saying—if it seems like I’ve disappeared, I have. But it’s nothing unexpected. (In such a case, feel free to harass Dan on Facebook or by text if you have questions.)

***

My new chemotherapy med is gleostine.

Like Temodar, gleostine (it has so many names: CCNU, CeeNU, lomustine) is also used for treating primary and metastatic brain tumors. (My tumor is primary, by the way, meaning it started in my brain and didn’t spread there from some other cancer.)

It comes in capsules, with really trippy instructions like “don’t touch this shit without wearing gloves” and “P.S. we should really disclose something about mustard gas derivatives.”

Oh, and one 200-mg dose costs $1100 without insurance. With my particular form of Obamacare*, one dose costs me $110. However, because I pay $350 every month in insurance premiums and don’t have a job and my Social Security Disability case is in limbo, it still feels like it costs an arm and a leg.

I’d rather it cost a brain tumor.

***

My orders are to take the gleostine at bedtime on an empty stomach, save for a preceding Zofran and water cocktail—designed to minimize my chances of puking up the very expensive pill.

I’m not supposed to eat anything for a couple of hours after taking it either, but with any luck I’ll be asleep. If I’m not asleep, I’ll probably be puking and not eating. You see how I can’t fail here, right?

***

Side effects. To be an informed patient, you have to read the literature. Which means you have to lie to yourself and pretend you aren’t petrified that all of these horrible things could be part of your future.

Common side effects:

  • Low blood counts (Onset: 10-14 days, Nadir: 5-6 weeks, Recovery: 6-8 weeks)
  • Anemia
  • Increased infection risk
  • Nausea and vomiting

Less common side effects:

  • Decreased appetite
  • Mouth sores
  • Infertility

Delayed side effects with slight risk:

  • Pulmonary toxicity (could be delayed for up to 3 years)
  • Kidney toxicity
  • Blood cancer (Nadir: 4 weeks for platelets, 6 weeks for white blood cells)

***

In summary, I’m a little anxious about the unknowns, but not so freaked out that I’m willing to put off treatment. Wish me luck!


* Now would not be a good time to take away my Obamacare, ‘kay?

Brain Tumor · House and Home

Baking with a Brain Tumor: A Timeline

zucchini bread recipe.jpg

I remember when baking was no big deal for me. I’d think to myself I want chocolate chip cookies. And, BAM! I’d start dancing around the kitchen with ingredients bunched up in my arms.

But life with a 6.3 cm brain stem tumor is a little different. I don’t get to really take moving around for granted anymore. I celebrate walking to the bathroom without a mobility device. I raise my fists in triumph when I empty the dishwasher. And I know I must sacrifice an entire day to the Spoon gods when I want to make my grandmother’s zucchini bread.

It’s totally worth the sacrifice, but it’s hard to adjust. I expect so much more from myself. Myself rarely lives up to expectation.

Here’s what I mean:

8:36 a.m. — Declare my intentions to make zucchini bread so that my husband knows what’s going down today.

10:46 a.m. — Empty and load the dishwasher to make room for baking shenanigans.

10:59 a.m. — Sit down in my recliner until I catch my breath and regain my balance. Hydrate.

12:04 p.m. — Read the recipe, grab the needed ingredients*, and put them on the counter for when I feel up to mixing things.

12:22 p.m. — Rollate myself back to my recliner and wait for my heart rate and breathing to return to normal.

2:14 p.m. — After a quick personal energy assessment, ask husband for help with 1.) getting out the food processer, which lives on a low shelf and is heavy, 2.) processing the zucchini, and 3.) washing the new loaf pans.

2:37 p.m. — Measure and dump ingredients in the bowl. Clutch counter top and wait for the kitchen to stop spinning.

2:38 p.m. — Sit down on rollator and take a break from stirring the batter because right arm is exhausted and left arm is just totally worthless here.

2:40 p.m. — Say yes when husband asks if you want him to continue stirring.

2:55 p.m. — Spread batter in pans while marveling at how your left arm shakes even though you are trying desperately to hold the bowl steady.

3:59 p.m. — Wonder how an hour has passed and the bread is ready to be yanked from the oven because you haven’t quite recovered from the physical exertion of baking a simple quick bread.

zucchini bread.jpg
* My grandma never made this for us with raisins or nuts, and I have never added them. So judge me accordingly.

Brain Tumor

Gotta See a Man about a Tumor

fci greenville.PNG

True story: There’s a medium-security federal prison on I-70 in Greenville, Illinois. You can see it from Interstate 70. You can also see a sign situated in front of it that reads “If you lived in Greenville, you’d be home by now.”

“Oh my God, Dan. Did you see that?” I asked through my laughter. “Who puts a ‘you’d be home by now’ sign in front of a federal prison?”

“Why, the great citizens of Greenville, Illinois, I do reckon.”

“It makes me wonder if someone has the best sense of humor ever or if someone is uncommonly oblivious.” And then I paused reflectively for a second. “Doesn’t matter I guess. I can’t decide which would be funnier.”

We were on our way to St. Louis to see my doctor about my brain tumor, a Grade 2 astrocytoma nestled all up in my brain stem.

***

I had a full day of doctor things at Barnes-Jewish Hospital. It started off with an MRI. Then I had labs done to check my counts and make sure I was in good shape to start back up on chemotherapy, and then I had a visit with my neuro-oncologist.

The nurse who installed my IV for the MRI contrast immediately made my day. “Are you going to have other labs at the 7th floor location? If so, I can leave this IV in, and the nurses there can use it to draw blood. One stick today.”

“YASSSSSS!” I cheered. I’m a hard stick now that I’m a cancer patient. Like, my-veins-are-sentient-and-burrow-into-my-bone-marrow-at-the-scent-of-an-alcohol-swab kind of hard stick.

emily suessWhen it was time for the draw, the IV wouldn’t give up the goods though. In all, they stuck me five times yesterday. And that just sort of scratches the surface of the list of Things That Were Hard About Yesterday™.

My MRI appointment didn’t show up in my patient portal thingy, so I went to the wrong location. We had to walk to another zip code to get to the right place. And the sign-in process there was senseless. Requiring bouncing around on three different floors. I don’t know if y’all remember this, but walking is hard for me.

I managed to get it done without a wheelchair because I’m stubborn and had my rollator.  (My legs cramped up all night long. Today I can hardly stand up and there’s a spot on my to-do list in all caps “APPLY MAGNESIUM LOTION AND SIT IN YOUR DAMN RECLINER ALL DAY.”)

The MRI itself was the best one yet. “Imagine” played on the headphones while the magnets jiggled the table and lulled me into a relaxing sleep. When I wasn’t dozing in the Skinny Tube of Loud and Screechy Noises, I was able to keep my eyes open. I am officially over all MRI fears.

Die in a tire fire, claustrophobia.

***

Despite an extremely draining six outpatient hours at the hospital, I feel good about the outcome. The MRI told the doctors that my brain tumor is still stable—a comfort considering any active treatments were postponed while we waited to figure out what was happening with the Temodar.

According to the nurse, my blood counts were “beautiful” following my treatment hiatus, meaning I’m in a good spot to resume treatment.

I don’t have to go back on the Temodar!

My doctor has prescribed a new chemotherapy pill, and this is one of those rare cases where “the evil that you know is better than the evil that you don’t know” just does not apply.

When my doctor said, “We’re very concerned about what happened to you on the Temodar,” I was so relieved.

My doctors are still listening to me and they are concerned about my quality of life. They care about me as a whole human person. I’m not just a tumor incubator with the potential to land them on the cover of Brain Tumor Slayers Monthly.

***

So here’s the plan:

  • My new chemotherapy is still a pill that I can take at home. No infusions.
  • The name of the medicine is gleostine (also called lomustine, Ceenu).
  • I take it for one day and have six weeks off, as opposed to the five-day regimen for Temodar.
  • Fatigue seems to be a certainty as far as side effects go.
  • One dose of chemotherapy costs $110. (That’s in addition to my monthly premium of $350 for health insurance, so here’s where I plug my YouCaring fundraiser page again.)
  • I will resume weekly labs to make sure my blood counts are good, or at least passable, but I can do them here in Urbana.
  • My doctor gave me a new script for PT/OT. I have to check with insurance to see if I can even afford it. But I’m hoping it will be possible and that it will help me get over some pain and numbness that’s overtaking the left side of my body lately.
  • My dexamethasone dosage is being reduced from 2 mg daily to 1 mg daily. (Fingers crossed, I can stay active but a little less hungry on this dosage. I gained another 10 pounds since my last doc visit.)

 

Brain Tumor

Let’s Talk about Death, Baby

brain tumor and death.png

This post could potentially make people that know me or love me uncomfortable, because I’m going to talk about my eventual demise and my wishes about what should happen when that time comes.

***

When I was first diagnosed with a brain tumor, I had some pretty typically terrifying thoughts about my mortality. But I’ll tell you a secret: that was not a new thing for me. In fact, when I was in second grade, I had severe death anxiety that kept me up nights and, now that I reflect on it, probably had my parents pondering whether or not therapy would help me.

“I was thinking about John Henry,” I said hugging the toilet in case I puked. “We learned about him in school. And then I remembered I didn’t want to go to church last Sunday. AND MOMMY I DON’T WANT TO BEAT A MACHINE AND THEN DIE AND GO TO HELL.”

So yeah, I was obsessed with dying and rendered sleepless for a few weeks during my eighth year of life, but eventually I calmed down.

***

And I’ve totally chilled out about dying of a brain tumor too. That’s because I realized something: I never have known when I was going to die. And that makes getting up every day with a brain tumor kind of normal. In a way.

I could have died in 1993 from a freak explosion in my kitchen involving a microwave and a couple of forks, but I didn’t. I could’ve died in 2002 from beheading, but I didn’t. I could’ve died yesterday after being poisoned by a bad batch of chocolate chip cookies, but I didn’t. None of these things happened, but they all could have.

Bottom line is that I still have no idea how many days I have left. So blogging about what I want to happen when I die shouldn’t be read by you, dear reader, as my thinking the end is nigh.

I have no more clue today when I will die than I did when I was an eight-year-old kid being terrified by church people about hell. It’s just I’m practical enough to think it could be helpful to have this sitting here so my family doesn’t have to deal with grief and worry about maybe pissing off my ghost.

***

1.) Do What Comforts You

I don’t really care whether I’m cremated or buried or given to science. So put my ashes on the nightstand or mail them to Rodney Davis (if applicable) or bury me in one of those pods that grows trees. Just don’t spend too much money whatever you pick.

2.) My Social Media Accounts

Leave them up or archived or whatever, if you like. But if I have some kind of automatic posting thingamajig set up on a site where my accounts are still updating themselves after I die, please turn that shit off. That’s just creepy. (A few years back I was haunted for a while by someone whom I learned had passed away. She had some automatic Tweets going every day. I was tortured by the question Is it rude to unfollow a dead person? for weeks.)

3.) Remember I Had a Brain Tumor

People are bound to discover things about me after my death that I wouldn’t have necessarily advertised while alive. Embarrassing things. Mortifying things. Mean things. Ignorant things. Shameful things. Please blame them all on my brain tumor, even if they happened years before my diagnosis. I mean, truthfully, we don’t know how long that thing has been there, and I feel like I deserve the benefit of the doubt.

4.) Have an Informal Get Together

Go to a restaurant or rent a shelter house at a park or something and eat food and tell jokes and hug each other and show a slideshow of pictures from my life instead of staring at me under horrible lights in a funeral home. Unless staring at me under horrible lights in a funeral home makes you feel better. In that case, see point 1.

5.) Don’t Feel Bad About Getting Rid of My Stuff

Keep what you want and donate, sell, or pitch what you don’t. Unless hoarding makes you feel better. In that case, see point 1 and then call A&E.

6.) Let Me Go

Look, I know this blog post isn’t a legally binding document or anything, but I’m not really feeling up to the task of drafting legal documents right this second.

I don’t want to be on life support for years or even months if the tumor gets bad or I end up in some auto accident that leaves me unable to breathe on my own.

The daily stress of pull-the-plug-or-do-not-pull-the-plug is not living for my family or caregivers, and it sure as hell ain’t living for me. And whoever is around to make that decision, if it comes to that, should be supported by every member of my family.

7.) Someone Take Care of My Pets

Depending on the circumstances, it may be obvious who will take care of my pets. Or it may not be. What is 99.9% certain is that I will have at least one pet at the time of my death. I can’t not have a pet. Anyway, I don’t want that pet going to a shelter during its time of grief.

That’s all I can think of right now. I reserve the right to amend this post at any time. Feel free to bookmark it for future reference.

 

 

Brain Tumor

Weekend Update

Dan at the Dentist

toothThe dentist mailed us an estimate for Dan’s dental work. While it needs to be handled sooner rather than later, it is thankfully not the catastrophic emergency I was worrying about. The work needs to be done in three phases:

Phase I: $584
Phase II: $584
Phase III: $105

That’s a grand total of $1,273. Once we have raised enough to start Phase I, he’ll get it on the books. If you’d like to help us cover expenses, please consider sharing a link to our fundraiser campaign: Help Emily Suess Pay Medical Expenses for a Brain Tumor. (The site tells me every share can help raise another $37.)

Next Steps for My SSI and SSDI Applications

US-SocialSecurityAdmin-SealA wonderfully helpful woman at the Social Security Administration office in Effingham, Illinois called me earlier this week, because the Champaign office is backlogged and Effingham staff are helping out.

My initial application—which I completed online—was to see whether or not I qualify for SSI (income-based assistance, as in “we have none”) and SSDI (disability insurance). Do all the applying in one shot, you know.

“Can you tell me the approximate balances of any checking and savings accounts you have?” she asked.

I gave her the estimates, and she let me know that I have too much money in my savings account for the income-based assistance. (I won’t after paying September’s property tax installment, so I can ask them to fire off my application at that time, if I’m still waiting on an SSDI ruling.)

Before telling me that my application was being sent off to Springfield, IL for review and denial/approval, she helped me clarify my answers. (Seriously, some of the application questions are ambiguous and could be interpreted at least six different ways.)

My Current Mood

thumbs up emojiI’m doing very well, all things considered. While I struggle to complete activities I took for granted 10 years ago, I am content with the dynamic nature of my abilities and disabilities. I wake up in the morning thinking to myself, Even if this is all I am capable of accomplishing for the next 20 years. I can do that. And be happy.

I know not every day can be like that. And that’s okay too.