“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)
- Increased infection risk
- Nausea and vomiting
Less common side effects:
- Decreased appetite
- Mouth sores
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?
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.
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.)