Here’s What’s Happening

Here’s What’s Happening

I had follow-up appointments with all of my brain tumor doctors earlier this week at Siteman Cancer Center. Posting a bare-bones update so I can keep people informed but not expend too much energy.

I’m tired, guys.

Neurosurgeon:

I got an all-clear as far as recovery from February’s brain biospy. I’m still frustrated with my progress, because I want to be perfect. But doctor is very happy with my progress and says I don’t have to go back to him unless something comes up. As a part of my medical team, he will continue to monitor my periodic MRIs.

Neuro-oncologist:

The second dose of chemo (gleostine) will be higher than the first. Since I had the allergy to Temodar, he didn’t want to start me off with too high a dose of the new chemo and cause me additional problems. Things went well and my blood counts were decent, so my next round will be higher. I have the pills in-hand, but don’t plan to take them until Monday.

He’s given me the go-ahead to try tapering off of dexamethasone again with some flexibility to do the taper however my body can handle it. His only admonition was to go back on it immediately if I had any problems. No worries there. I’m not keen on ER visits.

I asked him about getting my flu shot this year, and he gave me his blessing with a caveat: get the shot on week 5 of my chemo cycle when my counts are the highest and my body is at its toughest.

*** Special Request: If you’re able, get your flu shot. Yes, even if you feel like you don’t need it. You are helping to protect people like me with compromised immune systems stay as healthy as possible. ***

Radiation Oncologist:

He only needs to see me every other MRI, assuming my scans continue to look good.

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.)
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.

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.

They See Me Rollatin’

cat on rollator.PNG

We’re having unseasonably fantastic weather here in Urbana, and that means that I’ve been spending anywhere from 60 to 90 minutes outside for the past few days.

I mostly just stare in wonderment at Dan’s garden from under the shade of our maple tree, but I’m moving around a little bit too. Grabbing my trusty rollator and walking around the back yard.

Today I was so pumped, I walked to the front of the house. In my pajamas. Part of me wants to wear a sign for my neighbors: PAJAMAS ARE FOR CLOSERS.

***

“I don’t know why I love staring at these plants so much,” I said to Dan. “It’s not like I’m going to see them grow in the time I’m out here. Just something about it makes me happy.”

“I think it’s because there’s something inherently optimistic about a garden.”

So true. Also? I get to imagine all the things I’m going to eat. Nothing tastes bad on dexamethasone. Nothing.

I mean, I’m not going to start eating mushrooms anytime soon, but I have a suspicion I could tolerate them now.

***

My ACA health insurance kicks in on July 1, so I got on the phone yesterday to schedule that appointment with the allergist I had to cancel when I lost my job and insurance at the end of May.

The test is to determine whether or not I have an official allergy to Temodar, my chemotherapy pill. I am mostly hoping that the answer to that question is yes, because I want absolutely NOTHING to do with that pill ever again. And I want my oncologist to say nicely to me that he will never ask me to swallow certain death in pill form ever again.

But it’s not clear to me yet what other chemotherapy options I will have if the Temodar is a no-go. Fighting brain cancer requires treatments that can cross the blood-brain barrier, and that’s kind of complicated. And, yeah, I want to fight this shit, so…

***

If you’d like to donate to help us with medical and living expenses as I continue treatment, please visit my YouCaring campaign.

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.

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

Daily Chemo and Radiation Treatment

Daily Chemo and Radiation Treatment

First chemo & radiation treatments are complete.

Here’s how my morning went so far…

5 am: Take Zofran (anti-nausea)
5:30 am: Take Temodar (chemo)
6:30 am: Take regular morning meds
7:20 am: Get radiation
8 am: Have weekly meeting with radiation doc
9 am: Eat birthday cake

I’ve gained 10 pounds since they made my radiation mask. It’s hella tight now and a little disconcerting to say the least. The tech warned me that I had waffle marks on my face when she took it off. I looked reptilian and naturally made Dan snap a picture. The mask was so freaking tight.

Did I mention they clamped my head to a table with a mask and it was really tight? 😉

The hardest part of radiation though is lying on the table with nothing to do but ponder my circumstances. (Same for MRIs.) There was a fair bit of me trying not to ugly cry while they played the 80s rock station for me. Today was Paradise City, Shoot to Thrill, and Faithfully.

I am generally in good spirits, but have my moments. It’s healthy to have moments, I do believe.

The rest of my treatment appointments this week will be midday instead of early morning.

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