My New Chemo: Gleostine

My New Chemo: Gleostine

Jul 31, 2017 | Brain Tumor

“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

Jul 31, 2017 | Brain Tumor, Personal

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.

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