My New Chemo: Gleostine

My New Chemo: Gleostine

“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?

Baking with a Brain Tumor: A Timeline

Baking with a Brain Tumor: A Timeline

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.

Gotta See a Man about a Tumor

Gotta See a Man about a Tumor

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 suess

When 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.)
Let’s Talk about Death, Baby

Let’s Talk about Death, Baby

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.

Weekend Update

Weekend Update

Dan at the Dentist

The 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-Seal

A 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 emoji

I’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.

Am I Allergic to My Chemotherapy?

Am I Allergic to My Chemotherapy?

We got back last night from an overnight jaunt to St. Louis, where I met with an allergist to try and determine whether or not I have an allergy to Temodar, the chemo pill prescribed by my oncologist. To sum up how I got here, in case this is news or you’re fuzzy on the details:

  • In March and April, I took Temodar simultaneously while completing radiation at a dose of 140 mg. Those 5+ weeks were pretty okay. I had some side effects, but nothing anywhere near as bad I had been bracing myself for.
  • The day after that round of treatment ended, I broke out in what I thought was THE WORST RASH IN HUMAN HISTORY. A dermatologist was seen. Creams and antihistamines were prescribed. I was miserable for a few days, but it got better.
  • Radiation was officially over at this point, and chemotherapy and I were on a break for a couple of weeks. The plan was for me to start up the once-a-month-for-five-days-in-a-row chemo regimen on May 15. The dosage would be much higher: 320 mg first thing in the morning after I’d take my precautionary Zofran.
  • I took that first 320-mg dose, and four hours later the apocalypse started. My doctor put my treatment on hold and recommended I see an allergist.

To my great relief, the allergist did not order me to swallow a Temodar pill and watch to see what happened. She only ordered a scratch test with serum made at a couple of different concentrations.

“If we get a positive reaction, that will certainly tell us something,” she said. “However, if we get a negative. Well, that doesn’t really tell us anything. There isn’t a whole lot of literature on this.”

There was no reaction, but based on the symptoms I’d reported and some lab work I’d had done to investigate whether DRESS syndrome was a potential culprit, she devised a basic plan of attack.

Her first choice for me would be to make a switch to a new chemo drug, if a suitable alternative is available. If not, she’d like to try desensitizing me to the Temodar so that I can continue with treatment and not lose progress on shrinking the fucker. (She did not call my tumor a fucker.)

Desensitizing would involve me taking micro doses over a longer period of time. They’d keep me under observation and monitor me for eosinophilia until they figure out what I can handle.

So my allergist and my oncologist are going to have a chat about next steps. In the meantime, I’m just holding tight and enjoying some relatively decent days without chemo.

I Used Knives This Week, People!

I Used Knives This Week, People!

I used knives this week—and I mean ones for cutting, not just buttering. I sliced tomatoes for a couple of turkey sandwiches and then on a couple of other occasions I cut fresh strawberries.

Two things make this accomplishment noteworthy:

  1. Kitchen prep requires standing and balancing at the counter with BOTH ARMS FREE.
  2. Wielding a knife while standing and balancing at the counter requires a certain amount of confidence in my ability to perform a task while working with something sharp and stabby.

Assuming that my brain tumor is still unchanged since the last MRI, I pretty much give all credit for my dexterity and standing-up strength (however little of it there might currently be) to the dexamethasone.

My chemo doctor has given me another 30-day prescription for the dex. He’s also requested that I have another MRI. It’s just that time again; there’s nothing troublesome that’s forcing the issue. So I’ll be doing the MRI thing again on July 26.

The Next Thing: A Dental Emergency

The Next Thing: A Dental Emergency

Next Monday is my Temodar allergy test. To get accurate results, there are many medications the allergist has asked me to stop taking. Things like Benadryl, hydroxyzine, nortriptyline. (Not that I take these things regularly, but I’m especially supposed to not take them right now for reasons I will assume are obvious.)

temodar.jpg

Medical cannabis is not on the no-no list that was mailed to me, but then it wouldn’t be. So I took myself off of it too. Because I don’t want to have to repeat any tests or suffer the consequences of inaccurate results.

So when I got up this morning stiff, sore, unrefreshed, and the most not-morning-person I’ve been in a couple of weeks, I said out loud “I miss you, Pot.”

Eating half a medical cannabis peanut butter cookie with a scoop of ice cream at 7 p.m. has become something of a ritual for me. Like being tucked in by my parents when I was five. My 1:1 CBD/THC cookie kicks in about 9:30 or 10:00 pm. It’s then you’ll find me relaxing in my recliner until I can’t keep my eyes open and I move to bed.

I sleep well until my dexamethasone hunger and the rising sun wake me up. And let me tell you, after literal years of pain-related insomnia, good sleep is perhaps my favorite thing about cannabis.

But that’s not really what this post is about. It’s just my roundabout way of explaining to you why I was up and restless last night and how I knew that Dan was awake all night long too, despite trying to shuffle quietly around the house.

***

“You had a rough night? You were up a lot.”

“Yeah,” he said. “This tooth.”

His tooth has been nagging at him for months now, since about the time I was hospitalized. And because Dan has this habit of doing everything for me and pretty much nothing for himself, he’s been ignoring it. Or trying. I’ve noticed the Anbesol sitting out on the bathroom counter a lot more lately.

“You’re calling the dentist tomorrow. I know we don’t have dental, but we’ll figure it out,” I said.

“OK.”

“You have to put the oxygen mask on yourself first and all that shit.”

“I know.”

“You’re no good to me dead, Poehlman.”

***

This happened with another tooth a few years ago, and it turned into an emergency room visit and oral surgery a few days later. (Dan takes a biologic that makes him a high risk for infection, and the tooth abscessed, and…)

dan er

He has promised to call first thing tomorrow morning. If he requires oral surgery this time too, it will mean finding someone who can 1.) sit in the waiting room while he’s under anesthesia and 2.) drive him home when he’s finished and asking staff what time the X-Men are coming over for dinner.

It will also mean asking for more money from our support system.

As everyone’s probably tired of hearing by now, we have no income at present. So in preparation for the costs associated with The Next Thing™, I’m adjusting the goal for my YouCaring campaign and asking you to consider giving—or sharing the campaign on your blogs and social media.

Dude Keeps Me In Stitches

Dude Keeps Me In Stitches

We’re driving home from an appointment, and I check the patient app on my phone. There’s a new prescription listed. It says “suppository” in the description.

Me: Um, that new anti-nausea med I was prescribed? It’s a..uh…suppository? Doctor at the ER kind of left that bit out.
Dan: […]
Me: Don’t worry. I’m not asking you for help. I will never ask you for help with anything like that. Ever.
Dan: Heh. Heh, heh. Butt stuff.

***

I’m sitting in my nifty new recliner, which is right next to the picture window, with a view to our yard. Dan has gone outside with Boomer. Boomer is trying to goad a rabbit into chasing him.

Dan approaches the house, opens his eyes wide, and gestures obscenely with his tongue hanging out while staring at me through the window. In broad daylight.

***

Me: Going back on the dexamethasone has stopped my puking. I don’t think I’m going to take that suppository.
Dan: I made a special trip to the pharmacy. And that 4-day supply cost us $90 without insurance. Pretty sure you’re sticking something in your ass tonight, lady.

***

I’m back in my recliner. Dan’s back outside and has moved to the window on the east side of the house. I pretend not to see him, knowing he won’t quit his daylight peeping tom schtick until he sees I’m laughing. If I avoid laughing long enough, eventually the neighbors will notice.

***

That Oreo Thins Hypnotize commercial comes on for the bajillionth time while we’re watching Supernatural.

Dan: Yeah, just can’t stop picturing it.
Me: Picturing what?
Dan: This commercial. It sounds like a recording of Shaq standing in front of a truck stop urinal trying to pass a kidney stone.

***

Dan’s grabbing his keys and heading out the door for a trip to Meijer.

Dan: You need anything?
Me: Something obscenely caloric and comprised of at least 43% chocolate.
Dan: Next time, just tell me it’s Shark Week. I’ll know what to do.
Me: So we’ve moved on from calling it my Dark Passenger? OK.

A Thing I Did While Growing a Brain Tumor

A Thing I Did While Growing a Brain Tumor

Facebook tells me that on this day three years ago, Dan and I attended the Dave Matthews Band concert at Summerfest in Milwaukee. I remember it well. It was raining and only like 50° F outside. We could see our breath.

In July.

Fuckin’ Milwaukee, guys.

Anyway, we had lawn tickets but no chairs or blankets, because we weren’t anticipating the rain or the cold, slippery grass.  So I stood for the entire show. For HOURS. I wiggled and danced for a bit, walked around a little. Then stood still. Then shifted my weight from one leg to another. Then started the routine all over again.

At the end of the concert, we had to walk back to the car. My legs were tired. The car was parked several blocks away, and I remember saying to Dan, “My legs feel weird. Like I can’t walk. I don’t know if I can make it all the way to the car.”

I had no clue what was happening to me at that time. I just thought it was exhaustion and that I was really and terribly out of shape. (Even though my height, weight, and activity levels were still leaning toward the decent side of healthy because I’m stubborn.)

At that point, I had already started seeing doctors about weakness and fatigue and a bizarre sort of limp that came and went, but I wouldn’t get a fibromyalgia diagnosis for about three more months.

I wouldn’t learn I had a brain tumor for a couple more years.

I did make it to the car without aid that night. But it was hard, and I remember stifling fears that something was really wrong with me. I remember plopping in the passenger seat and sort of lifting a leg into the car because it just wouldn’t.

Anyway, I wanted to take a moment this morning to say I’ve done a lot of really hard things with a brain tumor in my head—a tumor that I knew nothing about. Wonder what else I can do now that I know and have doctors that know how to fight it.

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