School is finally out for the summer. Upgrade the status of my kids to preschool, 2nd, 4th, and 7th grades. When this whole thing started (I’m talking about Glioblastoma, of course), I had a 5th grader that was a safety for my kindergartner at Breton Downs. Mia was 2 and would take naps with me in the afternoon. Now, she is biking around the block, and I drink more coffee.
I am still working about 25 – 30 hours per week. This seems to be a nice balance between work, treatments every third week, and family time. If an MRI shows tumor progression, I will likely be out of the cardiology office and spending more time in the neurooncology waiting room. I was pretty fortunate after my first round of treatment (surgery, radiation, standard chemotherapy) to return to work, but maybe non-invasive cardiology is just not that difficult.
On my last Keytruda (pembrolizumab, or MK-3475) infusion, I learned two more things about my clinical trial. First off, there was another update about potential toxicities, and I had to sign another consent acknowledging these. When you have GBM, nothing else on the list sounds that bad if the treatment is working. Diarrhea? I can handle that. Fatigue? Who isn’t? An erection that lasts over 4 hours? That’s not normal? (JK, that’s the Viagra insert). A certain percentage will develop serious autoimmune disease. This is the most common catastrophic complication of immunotherapy. There is a very low risk of cardiac toxicity which strikes home professionally and athletically. I do occasionally put the echo probe on my own chest and am disappointed to realize my heart is normal. My symptoms are being on the other side of 40. The second thing I learned was that my clinical trial extends through March 2018 if there is no progression. Fine. That just pushes out a decision of “What’s Next?” if things continue to go well.
Immunotherapy has been a hot topic in the fake news media and medical journals (i.e., New York Times and New England Journal of Medicine). I prefer the fake news since it is usually anecdotes of great responders to immunotherapy. We all like to read things that confirm our own biases. In the NEJM, the data is more raw, including a June 22 article on nivolumab (an immunotherapy drug like pembro) vs. standard chemotherapy for advanced lung cancer. The bottom line was no clear benefit, but immunotherapy probably better for cancers with higher mutation burdens. These very abnormal cells can be recognized easier by the immune system if just given a little boost. We will eventually need to tailor immunotherapy to specific markers with a combination of traditional chemotherapy, radiation and surgery. Immunotherapy is no panacea.
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Participation Trophy
One of Connor’s final assignments in 3rd grade was to come up with 10 public policy questions to make a pro or con argument. After a slow start, we got rolling. Should bike helmets be required? Vaccines? (ahem, yes they should). Should participation trophies be given out? He has gotten a couple of those over the years, but now looks at his awards in his room a little differently.
“They are kind of dumb,” he said of the medals and one trophy for participation.
“I think it depends on the participation. If it was an accomplishment to compete and finish the event, then yes. If you just had to show up, maybe not.”
“I got one for ‘completing’ a rec soccer season.”
“Well, I got a participation medal for doing the 25K race.”
“Yes, but you are 40.” I didn’t feel like that is a barrier. We call that Masters.
“And that was a 25k” Very manageable.
“And you have brain cancer.” Humm, good point. Maybe I’ll wear that medal to work.
I did not have my usual confidence going into this RiverBank run. I wanted to go at a pace that I could be comfortable at for 15.5 miles without a total decompensation. I tried to start at a comfortable pace, and was happy to see that Todd Chassee and I were rolling at just under a 7 minute per mile pace. I was in better running shape last year, but felt much better this year. At the halfway point, I knew I could comfortably finish, and so I picked up the pace, running a mile through the hills at about 6:20 min / mile. Following that ill advised burst, I settled back at 6:40s or so. When I passed runners I recognized, I tried to act comfortable, breathing slowly. Crossing the finish line on Ottawa Ave, I got my participant medal and went to find Staci and the kids. No reason to look where I placed. I knew I wouldn’t get a ‘real medal.’
After the RiverBank, we celebrated with our children by leaving the younger two with Staci’s parents, and taking the older two to a swim meet at Notre Dame. Don’t ask me why we were there on Mother’s Day. Staci signed up the two older kids. Tiger Mom. I felt pretty good after the race, but after driving for 2 hours, I could barely get out of the car in South Bend.
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Last day of school
I usually take the last day off school off. Just like the first day, it is essentially a holiday in our house. Since I am only working part time, it did not cross my mind that I needed June 16th off given my usual half days on Friday. At Breton Downs, the 5th graders all run out of the front door and into the parking lot, but well before my half day usually ends. It is a quick graduation jog from the school’s front door into the parking lot. Even without a ‘graduating’ 5th grader of my own, I often get a little dirt in my eye as the kids run out.
It was also tradition to eat Lucky Charms on the first and last day of school (until it became a daily breakfast). That was until Trump announced his first Muslim Travel Ban. How is that related? Very indirectly. In response to the proposed Muslim Travel Ban, some EGR moms suggested reading material. This was to personalize their story, I presume (EGR is certainly a left leaning enclave in West Michigan). Anyway, I read The Long Pitch Home to Connor, a story about a 10 year old Cricket player from Pakistan that immigrated to the United States and started playing baseball. On an aside in the book, he mentioned he could not eat marshmallows since they are not ‘halal.’ After we googled halal, Connor and I noted it was defined as ‘relating to meat prepared as prescribed by Muslim law.’ Marshmallows have meat? Well, marshmallows have the animal product gelatin. Gelatin is just a slurry of leftover collagen from animals that is boiled. Lots of gummy candy has gelatin — that is what makes it have such great texture. Gelatin is made of the parts of the animal that is rejected in Oscar Meyer hot dogs, then it is boiled to make gelatin! Ahh, no thank you. **Trader Joe’s has non-gelatin marshmallows.** In summary, in an effort to educate Connor and myself on Muslim culture through fiction, we learned marshmallows were disgusting and the Lucky Charms went into the trash. Pass the Apple Jacks, please.
Queen Elizabeth was the only one up when I left for work on June 16th, so I grabbed a picture of her eating her cereal. Connor was asleep, and Allison was somewhere. I’ll try again next fall.
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Cancer Politics
As I type this blog at Starbucks while Connor is at basketball camp, I am sitting by two liberals having a discussion about politics, Justin Amash, and Hamilton. I realized I am such a cliche as they spout all the talking points I have thought and heard. Liberals are correct, but annoying. I cannot even imagine what a vegetarian liberal sounds like! I also have a pet theory that Trump is actually a closet liberal. He is so outrageous with his views and incendiary comments, he is trying to activate the liberals / progressives. He brings the most outrageous views into the light.
If I could no longer work, I would not receive health care from my job (crazy that health coverage is generally tied to a job, right?). I would then need to go into the health insurance market and pay ridiculous prices due to this pre-existing condition called GBM. I would be either put into a high risk pool, or, even as a medically retired cardiologist, find it difficult to find coverage at all. Obamacare is certainly not perfect, but Trumpcare will be worse in its current iteration (assuming the Senate bill resembles the House in any way). And I’ll say this and stop with the politics: what is the Republican goal with health care reform besides ending Obamacare? Quality coverage for all should be the goal for Americans. Obamacare has problems, but cutting funding to Medicaid and adding pre-existing conditions does not sound like a step in that direction. I’m starting to come around to a single payer system — it cannot be more complicated than the current system.
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GBM Friends
My good friend Chris Whalen was apologetic about his most recent MRI results when he emailed me. “At the risk of being your Wednesday buzz kill…” the email started. Oh crap. He has had progression on Avastin / Pembro.
He was the first person that I met that had my diagnosis. Actually had GBM. I heard from people that were X number of years survivor from an unrelated cancer. But Chris has been through hell and back GBM. He required emergent surgery, a prolonged hospital stay, and came out with some deficits, but not in his humor. That area must not be touched by GBM, no matter how aggressive. Or he fiercely guards it. He is holding on, and sets a great example of toughness and humor.
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Okay signing out for mid June in this delightful weather. And to my Republican friends, you know I still love you. Here is your parting picture:
Just in case you have not met the Alguires after all these blogs.
