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.

So Stinking Close

Got my CBC results yesterday, and my platelets were 93. Close, but not quite the 100 we were looking for, and my doctor is a bit of a stickler for these things. That means Chemotherapy Round 6 is delayed by yet another week, pushing me about three weeks past the ideal six-week dosing.

I currently have mixed feelings about the delay. I mean, I really want to get done with all the chemo crap. This roller coaster of feeling like a steaming turd and then being throat punched by another dose of gleostine just as I’m starting to feel human again is making me cranky.

But! Going this long between doses has also given my wrecked body a little bit of a break. My appetite is better, my energy is up slightly, my neuropathy is less intense, and my dehydration is manageable with enough sports drinks and electrolyte pops. As a result, I’ve had just enough energy to accomplish a few necessary items on my to-do list—including renewing my driver’s license and getting an eye exam.

Not that I drive right now.

I’m lucky in that I don’t have seizures and my doctor has not revoked my driving privileges, but I’m not comfortable driving. I get vertigo looking left or right, and I still don’t have full range of motion when turning my head. I find the thought of getting behind the wheel really unsettling. But I thought it would be easier to keep my license current than let it lapse.

And now it’s back to trying to get a standing order for IV fluids. (I love my team at Washington University, but they’re kind of far away. Things get complicated when it’s time to coordinate the little stuff that needs to happen close to home.)

Happy Wednesday.

Chemo Round 5 Is Complete

Chemo Round 5 Is Complete

I lost another 1.4 lbs this chemo week. For a total of 14.4 since quitting dex (about a month ago).

I’ve for sure got the pounds to lose right now, but I’m concerned about sustaining this through the rest of my treatments, because I’m not in control of this loss. It’s just one more thing that’s happening to me.

This round of chemo was the worst to date, and I’m confident it’s because I didn’t have the steroid to mitigate the side effects.

One side effect of the chemo that I haven’t mentioned before (because I was only sort-of aware of it) is a crushing depression and anxiety.

Anxiety asks: What if this god-awful hell isn’t temporary like you think it is. What if you can’t get the chemo out?

And Depression answers: Of course it’s permanent now. Since when did you become such an optimist, Anxiety?

And then I’ll read about someone in my brain tumor group having their tumor 97% cut out and I’ll cry to Dan. “They can’t cut mine out. I have to keep it.”

It’s rough. Some days this thing reduces me to a five year old that doesn’t understand why she doesn’t get presents at her friend’s birthday party too.

Other days I’m like, “Want to see where they cut my head open?”

Anyway that depression goes on for the last 24 to 48 hours of chemo week, and then I wake up on the 8th morning with the cloud gone, and I’m chatty and happy and smiling. I feel sort of silly for being so emotional.

But that’s cancer. And that’s chemo.

Chemo Round 5

Chemo Round 5

Last month when I completed chemo round 4, I did it at Mom & Dad’s to give Dan a couple of weeks off from caregiving.

It was the first chemo week were I had zero GI distress on the Wednesday following taking Gleostine, so naturally I was obsessed with why that time was different.

“Mom buys different yogurt,” I told Dan. “I was reading the labels and it has different active cultures in it. Buy me that Jamie Lee Curtis junk next time.”

When you’re on chemo you get lots of people telling you how much you need to eat yogurt, but they don’t really bother to say which kind. I switched to Activia at home. No GI distress for round 5 either.

I have at least one thing to celebrate.

The rest of round 5 has been difficult. Being off the dexamethasone is a two-edged sword. I’m losing weight, but my appetite is crap. Not eating plus not having the steroid is making me even more weak and tired. Something I thought was a physical impossibility.

Food is mostly gross right now, and there’s little rhyme or reason to what I can stomach and what I can’t. Generally, the warmer the food, the more it smells, the more it makes me want to hurl.

But eating cold food in the winter gets old fast.

And most of the time I just feel too tired to eat. Like moving my jaw to chew is just too much to ask of myself.

Also the word “chew” made me feel sick just now.

*Puts hand over mouth*

I should be coming to the end of the worst part of Chemo Week #5 soon though. And I managed to venture out into the back yard today for a few minutes.

It was a little too windy to not be cold, but the fresh air was good for me. I’m in need of an early Spring. If you see that groundhog, pick him up by the scruff and threaten to replace him with a marmot unless he does the right fucking thing.

Shrinkage!

Shrinkage!

My eyes still well up when I remember my oncologist entering the exam room on Wednesday. He walked in holding a print copy of my MRI report. I’d had the procedure done around 8:30 that morning, and when Dan and I met with him about three hours later he was holding the results.

“The tumor is smaller!” he said. He bent down to show me the part of the report with the happy news, and read it out loud to us.

“Oh my god! That’s fantastic!” I said. “I am so happy!” Our three faces were nothing but teeth, so big were the smiles.

***

When it was time to discuss my course of treatment back in February, I never considered not doing the chemo and radiation. I knew that some patients opted out, of course, but my personal philosophy was to do anything and everything the doctors recommended.

(And also legally vape some weed and ingest some “enhanced” peanut butter cookies.)

That does not mean, however, that I never second-guessed my decision after a dose of chemo. When you’re so weak and sick you can’t get out of bed for 7-10 days and the MRIs all come back saying the tumor is “stable,” you do wonder whether it’s worth it, making yourself that miserable for no significant results.

But when those thoughts did creep up, I tried to picture my neurosurgeon back in February standing over my hospital bed the night before my craniotomy. “You’re young, and all of us believe this will help you,” he said.

“All of us” was a big deal, because there were like 40 doctors weighing in on my case.

They learned just what kind of mutant my tumor was, and they picked a treatment course that had a history of working. I’d try to remind myself of that every time I had to swallow capsules full of medicine derived from mustard gas.

***

After taking a few minutes to celebrate my withering bundle of astrocytes, Dr. A asked if there was anything I wanted to discuss. So I brought up that my fatigue was getting unbearable and asked whether he thought I should go back on an iron supplement.

(About a year ago, my primary doctor had asked me to give them a try, but I’d stopped after being admitted to the hospital just because I had SO MANY PILLS to take that I forgot about the supplement.)

“I really don’t think iron is going to help. This fatigue is 100% my fault. It’s my medicine that’s causing the problem. So I’m going to prescribe you Ritalin to take following your next round of gleostine.”

I was kind of surprised. I mean, Ritalin? Really? But I see now that it’s also used to treat narcolepsy. And the generic name of the drug starts with “meth” so….

Gleostine Round 2: Part 1

Feeling pretty whiny today. Lots of things I’d like to rant about for this round of chemo, but too tired to articulate my complaints. Ten more of these, each six weeks apart… I feel like I’ll be doing this forever.

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.

Gleostine: Round 1, Part 2

Gleostine: Round 1, Part 2

emily suess
Moonfaced and bedheaded, but happy the blood draw went well.

Yesterday was my first post-gleostine lab day.

Gleostine chemotherapy, like all chemotherapy, requires a weekly complete blood count (CBC) with differential. On a pretty basic level, it lets me know how dangerous it is to go out in public without a mask. On a more complicated level, it lets my doctors know if I might need a course of antibiotics or perhaps a break from gleostine. This stuff is hard on the cancer and the body, after all.

Anyway, I don’t typically look forward to things that require my being stuck with a needle. Not because I have a phobia, but just because who does? As a patient who’s been stuck for blood samples and IVs hundreds of times since February, I think my veins sense when the needle is coming and get very unhelpful.

A couple of weeks ago, a one-stick event turned into a four-stick event simply because my veins were tired of cooperating.

So I always say something before the tourniquet goes on to put everyone at ease and manage expectations.

“I’m a hard stick,” I told the phlebotomist. “Start wherever you like, with whichever arm you like, but know that you might have to go to the back of the hand and try several times. And I’m okay with that.”

“Do you get stuck a lot?” she asked.

“Heh. Yeah, a LOT.”

She tried the left arm and couldn’t find a suitable vein. She didn’t even try with the needle. Just unwrapped the tourniquet and moved on.

“I drank twenty ounces of water before I came here.” (I always get asked if I’m drinking enough water. Always. The answer is: I am up peeing three to four times a night. I’m getting all the water I can without drowning.)

But thank the patron saint of blood draws, she found a pretty vein in my right arm before I even finished explaining that I wasn’t a bad patient.

One stick, and the blood filled up the vial in record time.

By 10 p.m., the test results were already in my patient portal, and everything is in range so far.

We’ll see what next week brings.

Gleostine: Round 1, Part 1

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.

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?

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