Time is flying by, and I am good with that. I am trying to enjoy the moment (or be mindful, or present, or whatever the latest catchphrase is), but I also want to get older fast. The holiday season came and went only days after the school year started. My last post, over a month ago, got bad reviews from my PCP and his wife, also known as my parents. Usually, I get several texts right after it is published. “So great!” they assess my blogs without a hint of bias. But after the Christmas letter, only silence. A few days later, “a few friends” of my mom thought it was depressing. I was going to redo it, put an overly positive spin on everything, but that would be juvenile. I flew by 40 in October, so it is time to show some maturity.
I recently did an online health survey for Priority Health to get a discount on my monthly bill. It is $25 dollar discount or so per month, so worth giving Priority Health my darkest secrets on a scale of poor to excellent. One of the questions made me pause: “Overall, how would you rate your health?” This second? Excellent. Tomorrow? Probably similar. Just like the weather, longer term predictions lead to more uncertainty. My most recent MRI on 12/20/2016 looked pretty darn good, thank you very much. My cancer or scar or inflammation (or a mix of all that) actually measured a bit smaller. As someone that measures three dimensional cardiac structures on two dimensional images all the time, I fully understand the limitations of these measurements. Small differences are usually measurement error, not clinically significant change. But I like smaller just the same.
I finished my penultimate Temodar cycle; The last one is coming up in mid January of 2018. For any that are to start, it is not too bad compared to most chemotherapies. The nausea is manageable, but it is more mental than anything at this point. I can think about the pills and get nauseated. I hate the large, white capsules with a powdery exterior. The original Stupp protocol treated patients during radiation and then 6 cycles (about 6 months). Some institutions keep it going until failure (progression or unacceptable side effects), other institutions have a more strict cuttoff. It is written in my protocol that I will stop after 12 cycles. I am ready to be done. I initially prided myself in getting up to swim early in the morning for EGRA Masters during the treatment week, but this just was not possible 12/21/16. Sure, I would not really push it, defer to others to set the pace, but be present nonetheless. The day I was supposed to start, we travelled to Chicago for an MRI / Pembro then to Muskegon for a high school basketball game. By the time I got home, I took my chemo at 11 PM, and turned off the alarm. Wednesday morning, well after the high school pool closed, I crawled out of bed.
I have only read one GBM research study in the last several months, and I was one of the subjects. I guess you could say I was published. It is about my pembro clinical trial at Northwestern. My primary oncologist, Katie, noticed it while trolling the internet for GBM studies after the annual Society for NeuroOncology meeting in November. I am not named, of course, but there were only 4 subjects in the trial with an age range of 39 (that was me) to 67 (no idea). One withdrew ‘without toxicity’ and the other 3 are alive and on treatment. Keep it up, 67 year old! And add that to my curriculum vitae.
Figure: top left, my Priority Health assessment. The rest of the figures are ‘my girls’ at Northwestern. Upper right, my NP Meg Schwartz going over my last MRI. Middle right, Priya Kumthekar photobombs a few weeks before her maternity leave. Bottom: my every 3 week date with my infusion nurse, Lilia Santana.
On a recent clinic day, every single one of my patients seemed to know my diagnosis. Cardiac disease does not follow a 12 month calendar, but we usually see stable patients yearly because 11 or 13 months just does not sound right. My clinic schedule is currently filled with patients that were supposed to see me exactly a year ago, but I was in the middle of daily radiation and chemo. A recent 85 year old patient had a heart attack 23 years ago, treated with thrombolytics without a stent (this would be unusual outside of rural areas nowadays). Since that time, he has had no cardiac events. He has probably outlived the need to see a cardiologist every year.
“So, how did you do it, Mr. F?” I asked, trying to make his drive worthwhile and fill the 20 minute appointment. With his success, he should be the one giving advice on treating cardiac disease. He admitted he was not that active anymore, but continued to hunt. He had a small game license, mainly going after squirrel. Okay, so now I am interested. I thought this may be a euphemism, but it was not. If you are wondering, the hunting season is in the fall, and the limit is 5 per day. Apparently, you can eat them, or at least he does (I guess you can eat most things). That is not advice I can give to the next patient, but I am sure squirrel meat is low fat and always free range.
Some patients are intimately familiar with my family and kids from this blog. “Is Mia still napping?” Ah, no, so maybe I should update her developmental landmarks: preschool, completely potty trained, no nap, learning to swim, has mastered the iPad, and feisty as always.
But mostly my patients that have had stable heart disease for years just say, “well, I guess I can’t complain…how are YOU doing?” Don’t worry, if things are not going well, you won’t be seeing me in clinic. Take my presence as a good sign.
Speaking of my clinic, new to my clinical practice is telemedicine. Spectrum’s program is called MedNow. I sit in my office in Grand Rapids, and have appointments with patients that are physically in Reed City. This is partially out of interest in trying something new, and partially to go back to a community that I developed a little affection for over the last few years. The exam has it’s challenges, but most diagnoses come from the history, and most of the exam comes from the ‘eyeball’ test.
Figure: Upper Left, Mednow with Margaret up in Reed City, me in Grand Rapids. Upper Right, Staci and I made an extra trip to Chicago, taking an obligatory selfie prior to seeing Hamilton. Bottom: Connor doing some handwriting analysis on the note from Santa.
I had my best dad moment of my the year on 11/29/16. This also involved small game hunting, but this species is federally protected. I just came home from a Chicago Pembro trip followed by a middle school swim meet. I was patting myself on the back for my cancer endurance. I picked up Queen Elizabeth at the Wealthy pool, and brought her to the EGR high school to watch Allison. Short on timers, I volunteered. That was not my grand achievement. After the meet, I did something only Dad could do in our house. I try to avoid reinforcing societal gender roles from our kids. Usually, I’m all for Nasty Women, Leaning In, or #imwithher, but some things are just for dads.
It was a pleasant fall evening, minimal clouds, crisp air. Warmer than usual. After we settled into our house, I was cleaning up the kitchen. That wasn’t the dad victory, either. I just put that in to show I share with (some of) the housework. I usually put the dishes away, and then Staci, much more meticulous, does a deep clean of the kitchen. Mia was already sleeping upstairs with her room partially opened.
“Mom!” Ella scream cried.
“Don’t wake up Mia,’ I whispered from downstairs to nobody that could hear.
“Dad…(something inaudible, maybe Mia is crying?)”
I hurried upstairs because Mia waking up would totally change my evening’s plans.
Ella looked scared and said, “something is flying.” She looked so surprised and scared, so I knew it was more than a moth, but it was pretty dark in the hallway. She may have tried to catch a moth.
This is when an intense soundtrack should be playing, but instead it was silent as we tried to keep Mia asleep. Ella and I walked into the hallway, but nothing was flying. We have an old house, so everything creeks upstairs. After a more thorough investigation of pictures on the wall, something did not match. There was a small, furry creature attached to the wall between Connor’s and the parents’ room. The little brown bat released from the wall, flew around a few laps, and landed on Mia’s half opened door. Supercharged on all the extra immunoglobulins, I went into action. The last time this happened, I was less than 10 years of age, and our parents were out of the house. We had to call the closest dad, Frans Jungslager, to come over, but that is a different story.
“Everyone shut their doors!” I said. Connor and Allison ran downstairs leaving their doors wide open. The older two hid in the mud room while Ella, sleeping Mia and Dad defended the house against this extra mammal. I grabbed a garbage can out of the bathroom, but did not feel good about it. I wouldn’t be able to see the bat once I covered it up. Staci finally came through and brought me a tupperware container (to the bottom of the stairs).
Ella’s door is right by Mia’s and the new location of the bat. “Is it safe to come out?” Ella asked, my only child that stayed cool under fire.
I slowly walked down the hallway with my container and placed it quietly over the bat. It was too easy.
“Did you catch it?” Ella asked, very close to me, but behind her door.
Yes, but, the door has so many ridges, it could crawl out pretty easily. I slipped the placement under the bat and it climbed into the container.
“Take a look, Ella…” I said.
“He caught it, Dad caught it!”
I walked downstairs triumphantly, and out the door. Connor found some bravery I was modeling, but never had as much as Ella.
“Can I touch it?” Ella asked. Ahh, no, but thanks for asking first.
Left, caught the bat. Right, Catch and release. I learned later that we needed to elevate the bat hang so he / she could take flight from a hanging position. Regardless, the bat was gone minutes after we went inside the house (probably followed us right back in through the attic!).
My second best dad moment of the year was volunteering during Allison’s science class a couple of times during dissections. As a mostly compliant vegetarian, I had no idea what I was looking at during the chicken wing dissection. A good cook would have been much more helpful. However, we did the sheep heart on 12/8/16. Fortunately, my colleague and cardiac surgeon at Spectrum volunteered the following day, so I was not upstaged by Dr. Tomasz Timek. My general cardiologist experience would pale compared to a great cardiac surgeon who holds human hearts in his hands daily. They asked me, “do you get to see real hearts?” Well, ultrasounds of them. Those are sound waves…never mind. Yes, I see hearts all the time! Afterward, the kids had a chance to ask questions, but they were all for the ENT doctor that also volunteered.
“How do you lose your voice?”
“How come voices are all different?”
Uh, hello, didn’t we just dissect a sheep heart? Not every question is a good question. Ask the cardiologist something!
Figure: heart dissection. Yes, I helped more than my daughter.
Since I am working less than before my cancer diagnosis, I have time to volunteer in the schools more (from never to occasional). I volunteered during dissections as above, as a substitute swim coach, field trips and mystery story reader. Most recently, I was interviewed for Mrs. Katie Michel’s journalism class at EGR High School as a guest blogger. I guess that it is when it was crystalized that I write this blog to tell this story in my own voice. I had several motivations in the beginning, from encouragement from family, extra time, therapy, but also to own the narrative.
I keep thinking about a quote I heard early after my diagnosis that was shared on my Facebook page by a friend from Ann Arbor (Elise Bruderly). It showed a picture of the University of Michigan professor Bruce Conforth, and it read “In the end, we’re all just stories anyway so just focus on becoming a really good and meaningful story.” Since I have been telling my story over this last year, I have heard from many of you on the street, in the clinic, or over social media with your own stories.
So, I will continue the blog through 2017. Less frequent posts when things are fine, more frequent if things change. Consider silence a good thing: I am just in the clinic seeing patients, playing with the kids, or hanging out with my family. Feel free to interrupt and tell your own story.
Figure: Left, Professor Bruce Conforth. Not sure if the quote is attributed to him. There was a similar quote in a Dr. Who episode after a thorough google search. Right, never too old to give or receive bunny ears at a Christmas party.