Already February, 2017

I rode to Chicago on January 10th with just my parents for the first pembro infusion of 2017. They are always invited to the less exciting trips. Translation: no MRI and nobody else offered to drive. Despite riding in my GMC Acadia for 3 hours with them, everything was cool. I had no symptoms, and knew my labs were going to be fine. I was just rolling into Chicago to get my infusion. My mom checked the clock nervously. She needed to get back to Grand Haven to pick up Genevieve at Mary A. White elementary school. I am no longer the focus even on these trips. That’s fine.

My pulse at this appointment was 47 bpm. My medical assistant raised her eyebrows at that number.

“Do you exercise?”

“Yes.”

“He could’ve been in the Olympics,” my mom told her. That is one possible explanation for a low pulse in this 5’9, 150 lb man. I just needed to find the right sport.

“He had to study too much,” she continued.

If only that were true. Do you think I would sit in the library at MSU studying for the MCAT on Friday nights if the alternative was preparation for the Olympics? I knew my limitations, but apparently my mom did not. I think that is why they seem so confident I am going to ‘beat’ GBM. We all have alternative facts about our kids. There is just a biological blindspot. I prefer denial. Beat what? I’m just here for my performance enhancing pembro.

The following day, Allison called me at 3:00 PM while I was in clinic with a patient. This is unusual, since I have only seen her use her ‘phone’ for Instagram, Snapchat, and texting. I was with an elderly African American woman and her daughter with difficult to control hypertension. She took her meds as prescribed when her blood pressure was high, titrating salt intake and meds to her blood pressure (not the ideal regimen).  While I was trying to figure out what to say, my Garmin watch started buzzing.  I was getting a call from Allison.

“Excuse me, got to take this. It’s my daughter.”

She smiled. Actually, see seemed to get a kick out of it. “Got to take care of family,” she said with a smile.  Her daughter was with her at her appointment.

“Where are you, Dad?”

“Clinic. Everything okay?”

“Yes.”

“Call Mom, she is picking you up. I am in a patient room right now.”

It reminded me that I never answer my phone in clinic except apparently for Allison. It also reminded me that I can call my PCP any time, and he almost always picks up. Even if in clinic. Or out to dinner. Probably even at a movie. I can’t say the reverse is true. As we children ignore calls from our parents, our kids get revenge by ignoring us. We always answer the younger generation calls. I even answered a FaceTime from Connor during clinic. You are just happy they are interested. And you drive them to Chicago if nobody else will.

The pembro trial is designed for 2 years, and then it just ends. I am removed from the trial if I have recurrence / progression. That would either lead to repeat surgery (if still resectable) and a different therapy. With 5 MRI scans planned (every 9 weeks) prior to the conclusion of the trial in December, that still seems like a long time. I have been asked multiple times what happens after the two year trial. Ahh, this is what happens: I celebrate. Only a small minority of GBM patients make it 2 years without recurrence. We could either continue pembrolizumab off label, take something else, or nothing (watchful waiting). I hope we will need to make that decision.

We were recently at the Spectrum Cardiology holiday party. A Physicians’ Assistant told me “I don’t really read your blog, anymore.” That’s fine, Matt Brower. I guess this is a safe place to call you out ;).  Being boring and obscure is all part of my 10 year goal. I’ve been back to work for over a year at this point, not missing a day since I’ve returned. I keep thinking I am going to work a little bit more, and then I think a little bit more.  Why change what works?  I have been back so long, the office is starting to take down the Team Craig signs and bulletin boards. I also had a Team Craig t-shirt that was hung up for people to sign. Those are now in my basement, and those bulletin boards are celebrating Heart Month.

Figure: Left, my signed T shirt from work, and a sign that was pulled down to make room for other announcements.  I think I surprised Pod C doing this well into 2017.  Middle right, putting the New England Journal of Medicine aside for Curious George.  Right, the only January birthday around here, Mary Violet turned 14.

I just asked Queen Elizabeth if she would go to the Sweet Heart Dance with me on February 11, and she said YES! So excited. My plan is to take my girl to Russ’ again, show her how to spoil herself with a perch dinner, two salads, and a chocolate shake. Dreams do come true, Ella.

The closest I came to crying (read, I was crying) recently was reviewing pictures from the 2016 Daddy Daughter Dance, specifically the selfie I took with Ella and me as we were drinking a milkshake. I was still bald, and she was just a little smaller. My Olympic Gold Medal is to make the age of 50. That would get Ella to 17, with even Connor and Allison already in college. I just mourn for the missed opportunity to answer the phone when she calls (when she needs something), or just inadvertently dials my number. “Giving” a daughter away at a wedding is a little old fashioned of a goal for me. I want to see them step out a little bit into the world, but have a big safety net for them at home.

russ-shake

Daddy Daughter Dance 2016

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Staci told me she thinks I am pretty normal, just more defensive than I was before this whole mess. She says I just don’t take criticism as well. Well, that’s bullshit, and she knows it! And here I thought we had something. For example, we used to give each other the best Christmas gifts: we did not exchange gifts. She broke that promise, and I felt betrayed as I accepted her gift. She said it was fine I did not get her anything. However, a few days later, I got an email from her with gift ideas for her for next time. The Nerve!

Segue to a more serious ending, I have seen people do very well with GBM and some not as well. A couple were diagnosed after me, and already have died or are in hospice care. Others were diagnosed before me, and are still doing okay. Still, the most difficult part is considering leaving a life unfinished. I have always been pretty lucky, and even with this, and I couldn’t have asked for a better 15 months. But the pain of my inevitable early absence in my home is real.  One of my best friends told me while running around the lake that there is pain because I have been so fortunate. Probably true and still bittersweet. No matter what happens, I got the best half of Staci. We had our first date, dance and kiss in high school. We went to college together, although not intentionally. She followed me to Ann Arbor, started a career, and we got married. We bought a condo, and then bought our first (and current) house with 3 kids in Ann Arbor and 1 extra in Grand Rapids.  We have 30 years of accumulated parent-years (all of our kids ages added up). You can only have one love of your life. She may find love again, but I own the best real estate in her heart. And I do not plan on moving out anytime soon.

Figure: Upper left, New Year’s Eve selfie.  Middle left, Allison must have seen the New Year’s kiss through the phone.  Lower left, princess Anna and an unnamed snow princess.  Upper right, Connor in January in Michigan.  Lower right, trying to teach Allison the backstroke about 11 years ago.  I was looking for older pictures of Staci and me, but apparently our digital photos only go back to Allison.

End of the Year

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.

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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.

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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.

“Shhhh…”

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!).

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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.

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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.

 

 

Christmas Letter 2016 Rough Draft

I hope everyone had a year filled with love and joy. We certainly have much to be thankful for this year, that is, except for brain cancer. That part sucked. #notblessed. But besides that, however, everything else was really good. And nobody else went to the emergency room or was diagnosed with a terminal illness. #blessed.

We had a very productive year on social media. We had way more ‘likes’ compared to previous years. Cancer works wonders for ‘likes.’ Who doesn’t like something terrible (for somebody else)? We have been able to carefully cultivate a very satisfactory and wholesome image on Facebook.

We started the year staying around Grand Rapids because I had chemotherapy and radiation every day. That didn’t suck that bad because radiation only took about 10 minutes, and I had the rest of the day free for to watch movies and sleep. But then I went back to work part time, so that prolonged vacation ended.

I was voted West Michigan Heart Physician of the Year (POTY) in 2014, and then BAM!, cancer hit in late 2015. Our group had officially joined Spectrum in early 2015, so I won the equivalent FMHVI Clinical Excellence Award late last year. 2016 is still up in the air, but I can see trends. The people want change. Drain the swamp. “Lock him up,” they say for sending patient information over Gmail in 2010. I get it. I am yesterday’s story.

Allison had a marvelous year. She was a safety for Ella’s kindergarten class, and all the Alguires agreed she was the best safety at Breton Downs Elementary.  Her swimming went well, almost qualifying for state in several events in the spring, and actually qualifying in the summer. These state cuts are pretty ridiculous, so that felt like a pretty big accomplishment. I certainly was not that fast in 6th grade.

Connor is the only boy, so his achievements are always blown out of proportion. He can watch his iPad for hours at a time, never being distracted by family life around him. I think he is going to do very well without a father #adaptable. He continues to play soccer with a skill set that his dad never had. I can still beat him in one on one sports based on pure size, but it is getting closer.

Queen Elizabeth graces us with her presence at times. She is too sweet to be an effective queen, but she does have her devious streak that I’m cultivating. She cannot win direct battles against her brother, but she is figuring out how to play around the rules when nobody is watching. Good for you.

Mia had a big year of change. Over the year, she left her crib, learned to scooter pretty fast, ride a bike with training wheels, and started preschool. She also threw out her pacifiers and handled it pretty well. We offered to get her a Daniel Tiger stuffed animal if she threw out her pacies, and 2 minutes later they were all in the garbage. Deal sealed, although we are still finding extra in odd places.

Miley had a rough year as well. She totally hit a wall in the Doggie Dash in early June, and tore her ACL in August. The vet gave the option of surgery or rest. Both are considered equivalent, so we chose rest since it costs much less. She is still hobbling around a bit, and this year really felt like she aged those 7 dog years.

For Staci and me, things could not be better. The kids help, our long-term relationship helps.  She is the glue in the family, and Team Craig’s actual captain.  She got the “Alguire of the Year” award in our house for the 15th straight year.  We rarely even talk about old girlfriends or boyfriends anymore. We do talk about future options for her, and I really try to talk her up around some of my male friends. I have given her a short list of my potential replacements that I approve of, but I will not share here. Most of them are still married, but a lot of things can change in a year.

We ring in 2017 with only one resolution, Alive in 2018!

Figure: Self-explanatory.  Merry Christmas and Happy Holidays!

 

Not the Election

Election Day 2016 was a great day at the Grand Rapids Alguire house, but that had nothing to do with the results. We all had absentee voted, so our part was over before the day started. We got up at 4:45 AM so Staci could shower before leaving the house at 5:30 AM. I tried to focus on love even though I was awakened 15 minutes earlier than need be to get myself ready. Forgiveness is easier if I imagined her in the shower, but before 5 AM, I’ve learned the interest is not mutual. The kids were all in a deep sleep when we left the house. Staci’s mom, Gail, was employed as our babysitter and chauffeur for school and swim practice. Her payment is an unfiltered experience with our kids.

Figure: Left, Gail reads to Ella and Mia.  Middle, Mia after absentee voting twice.  Right, Halloween at Breton Elementary.  Peppa Pig visits Missy Franklin’s classroom.

We met some of the Grand Haven Alguires at the Saugutuck exit Shell station at 6:10 AM per protocol. We hopped in the car of my primary oncologist, and rode with my PCP and mom.

We’ve trained the staff at Northwestern to give a quick review of my MRI before any small talk. No need for pleasantries or a neurological examination if you have MRI results. I’ll do the same. The neurooncology fellow walked in and said, “your MRI looks unchanged.” That’s good. I get another 6 – 9 weeks with Plan A.

Once the MRI results were shared, we threw a mini baby shower for my neurooncologist Dr. Kumthekar. She is expecting her second son sometime soon, so my mom put her knitting skills to work producing a whole line of baby clothes including a sweater, blanket, and matching hats. My primary oncologist baked several things as well. Mia misunderstood the plans for the baby shower, and thought it was “dad’s baby.” Ahh, no, but that would certainly liven up the blog!

On a previous visit, I actually had a symptom to report for the first time in months.  I was correct to be concerned when I had a partial seizure (brain cancer) and unilateral lower extremity edema after cancer surgery (blood clot).  I wanted to tell my doctor about the sores in my mouth.

“I don’t see anything,” she said.

“Right here.”

“Those taste buds?” she inquired.

Okay, that’s the last time I report anything minor.  She said maybe some mild mucositits that couldn’t really be seen well.

And then I imagined the note she would generate: “Craig Alguire reports sores in his mouth…on exam, no objective findings could be made.”

Figure: Top Left, my last MRI with a comparison to previous.  We have decided the white smudge is just treatment effect.  This appeared stable.  Top Right, Mia is trying to make sense of the election, but she might not find answers here (she only reads the cartoons, anyway).  Bottom, Uncle John with Connor and Mia at the O.K. Red Conference swim meet.

I know a handful of GBM patients these days. It was a week of mixed emotions.  David Hutchings, a Facebook friend and fellow runner with GBM in England, had progression on his last MRI and is trying to tolerate second line therapy.  On Monday, we attended a memorial service for Benny Boes. One of his friends gave the most personal and funny speech I have ever heard at a memorial. If his only impact in life was on that one friend, he would have brought a net positive light into this world. On Election Day, Chris Whalen told me he had another stable MRI. His doctors at Spectrum were giving high fives to each other.

I was driving Connor to Futsal (indoor soccer) 11/1/16, the day after a Benny died of Glioblastoma Multiforme. Benny Boes was diagnosed over after Spring Break in 2016. I did not know him until we shared this common diagnosis. Even before his surgery, he had significant neurological deficits with left sided weakness. That’s just how this presents, either acutely with a seizure, progressive headaches, or a progressive neurological deficit. Staci called me to tell me, and the phone went through the car speakers via Bluetooth. 

“Did you see Benny died?” she asked before I could swipe to phone only.

“Who is benny?” asked Connor.

So I debated quickly about what to say about someone dying of GBM. So I just played it straight.

“He is a friend that had brain cancer and just died.”

Without missing a beat, Connor asked, “Does that worry you?” 

What? I was thinking. Ahh, yes, but not anymore than GBM already worried me. And how come an 8 year old is asking that?

“Does it worry you?” I asked back.

“That’s the second time I was worried.”

“When was the first?”

“Bob.” That would be Bob Constant, Staci’s uncle, who died 10/5/16 from pancreatic cancer.

We hadn’t really talked about Bob’s death for several weeks, so it was a surprise to me that he brought it up. We had not even talked about my own cancer diagnosis directly in a while. I didn’t want to have uncertainty weigh on his mind. We are still on Plan A, I am doing fine, so I did not get the impression that he was worried. I find it difficult to find that space between honesty and reassurance.  So, instead we just listened to the audiobook version of Harry Potter and the Chamber of Secrets for the rest of the drive.  Sometimes, there is just not much to say.

 

 

 

 

A Different Sort of Anniversary

My diagnosis anniversary date is coming up on October 29th; My 40th birthday came and went on October 22, 2016.  Maybe we should have a combined party: music and laughter for me, chemotherapy for Glioblastoma (GBM).

I am winding down a year of oral Temodar pulses every 4 – 5 weeks and IV Pembrolizumab every 3 weeks. I was taking my Temodar the week leading to my birthday with the last pills for this cycle after my party.  Needless to say, Sunday morning was a little rough.  Last year, I wasn’t even sure if I would make it 1 year. Spoiler alert, I am doing fine.

Some days I want to talk about it, but most days just try to ignore it. Usually, I just save up my thoughts on a notes app on my iPhone and spew it all over this blog. Trump called my blog a ‘disaster’ and ‘rigged,’ but I don’t really care.  I can’t help but be biased on a blog about me.  As stated before, I did go to some counseling early on, but I don’t think I could really process having a cancer that is largely deemed incurable. How can you process that? “Okay, now that we worked through GBM, any other issues you would like to discuss?” I’m doing fine, that’s my processing.  Long-term survivors are rare, but vocal on the internet, describing a formula for success. Whatever. I’ll take my chemo, 1 Michigan craft beer at night, a clinical trial at Northwestern, and just keep living day by day as my own statistic. And if I become a long-term survivor, I’ll quit my day job and sell out to promote my Cinnamax© cure.

I look back at my pictures on my phone on 10/28/15, and then day after on 10/30/15. The difference is stark. I have Connor in a pumpkin costume that was meant for a baby, and then Staci holding a humongous coffee mug at Bigby. We were on the way to the University of Michigan to get a surgical opinion from Dr. Hervey-Jumper. We stopped at the Okemos exit Bigby en route, joking that more coffee would definitely be needed over the next several months (this was before I got my lucky Zoloft cup). This is followed by a few pics with my neurosurgeon, my cancer on MRI, and a bunch of photos with old friends. Prior to 10/29/15, I mainly took silly pictures around of the kids or events. After 10/29/15, I tried to photographically document all the little insults of being a patient and life affirming support from family, friends after a life altering diagnosis.

Figure: Left, Connor 10/29/15 wearing his baby costume.  Right, Staci grabbing a uber grande coffee at Bigby.

Life goes on. Kids start swimming. Teeth come out (of kids). Hair falls out (of me). Teeth grow back. Hair pretty much does to my pleasant surprise. I hope the GBM is less resistant to radiation than my hair follicles. Tattoos are inked. Other people become sick, most get better.  Sometimes, people die despite doing everything they can. Staci’s Uncle Bob was diagnosed with stage 4 pancreatic cancer in January of 2016. He tried everything, including doctors in Michigan, Florida and Chicago, and even with some alternative treatments. He treated his cancer like he treated any competition in his life, and planned to win. At his memorial, stories were told about his oversized personality and competitive nature. In the end, it was just a bad cancer, and not really a fair competition. He leaves behind a devoted family that had a chance to say goodbye to him over several weeks in Grand Haven. He never wanted to ‘give up,’ but I was most impressed with his quiet dignity in his last several weeks.

 

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I think it is about time to start writing Thank Yous, but probably will wait until after all my birthday presents are collected to have a real clean slate. My PCP is getting me a pretty nice rain coat, so I’ll start afresh after I receive it.  I wrote one thank you letter to J. Fox, but it was returned due to an error in the address! So much for showing my gratitude. If you are reading this, Thank You.

I received a gray wool blanket that I used frequently during naps over the past winter. I thought it was from a memorable patient I knew through Grand Haven connections, but I wasn’t completely sure. And then a few weeks ago, I saw her on my clinic schedule. After our initial greetings, and reviewing for any cardiac symptoms, I asked, “Do you knit?” acting like this was a routine question that cardiologists ask.

“Yes.”

“Gray wool blankets?” I said in follow-up, trying to get a better picture of what kinds of things she knit.

“One,” she said.

“Well, thank you.” I wish I wrote a quick thank you on her after visit summary (the printed paperwork patients pick up on the way out).

  1. Continue high potency statin and aspirin.
  2. Call the office with any chest pain (or neck pain in her case).
  3. Thanks for the wool blanket.

I really do love that blanket.

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I did the Reeds Lake Triathlon 9/10/16, basically to show that I could. It was an attempt to shake the ‘Cardiologist with Brain Cancer’ title, and regain the title of the ‘Cardiologist that does Triathlons.’ I took 3rd overall in the Olympic distance, earning $75 in prize money, a medal, and a nice backpack. Nobody asked about my clinical status because it was obvious I was doing fine. And that was the first time I ever won prize money! The triathlon had an $85 entry fee, so I will need to do a lot of races to ever make any real money. I know several people that would have knocked me off the podium, but they either did not race or did the sprint distance. Thank you, too! (if you really want to read about an athlete, check out this article about my niece Kathryn Ackerman).

Figure: Upper left, my new backpack. Upper middle, my prize money.  I thought about framing it, but I could not give up $75!  Upper right, the run during Reeds Lake Tri.  Lower left, the foursome after a cardiology conference (CTA, J. Decker, Tom Boyden and PCP just happy to be included in the back :).  I made no promises, nor was anybody impressed.  Bottom right, this is why I don’t play much golf.

I signed up for the River Bank run 207 days before the event. That’s enough time to get brain cancer, have surgery, and start training. I know from personal experience. Here was my training schedule: figure out my treatment schedule, take it easy during rough weeks, and then build during the non-treatment weeks. On the bad days, try walking around the block and call it a victory. I am hopeful that by paying my entry, it will get me through to 5/13/2017 feeling as well as I do today.

Figure: Left, Bucs pride game.  One of the stars of the team wore my name.  Nobody mistook Brady Jonas for me, however.  Middle and Right, Trout Steak Revival at Founder’s.  Pictured with Travis McNamara (banjo).  Best concert I have ever been to.

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#bestsistersever

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#thanksforagreatyear

Pseudoprogression

Just another MRI. My 7th, in fact, but who’s counting besides Priority Health and me? This includes my initial MRI 10/29/15, a repeat at U of M, an early post-op MRI in the middle of the night (you can’t get any rest in the hospital), my first follow-up MRI post radiation / chemo, and so on every 9 weeks until my latest August 16, 2016. I have settled into a routine at the Northwestern Radiology department, from the check in, changing into two gowns (because with just one you either sacrifice privacy of the front or backside), being scanned by a handheld metal detector, and then not trying not to fall asleep in the scanner. A short nap would be nice, but I tend to twitch while falling asleep, and do not want my movement to cause artifact.

Once you lie down on table, prior to sliding into the scanner, you cannot miss the pleasant and colorful cover over the ceiling LED lights. Whoever sells these must have a small target of radiologists and dentists. I think the cover is a floral scene at NW, but I’ll need to check for sure next time. And I also get a choice of music genres to be played through my headphones during the scan. These are not exactly “noise cancelling” headphones; you can barely hear the music over the loud imaging sequences. I’ve tried classic rock and pop, but it is like trying to play “Name That Tune” with just hearing a few seconds of the song playing at a time.

My 8/16/16 MRI was a little different. My previous MRI on 6/14/16 showed subtle changes, most likely inflammation. This was just something for “close follow-up” per my doctors. The 8/16/16 MRI showed more prominent changes. You really need to accept ambiguity at times to stomach MRI reports for GBM in the modern era. Radiation, and for some, immunotherapy can mimic progression. Per the Duke University special on 60 minutes, injected polio virus has caused similar confusion. I call it pseudoprogression. There is an appearance of growth, but could actually be the therapies working and beneficial. You just never get “normal” anywhere on the report. You hope for stable or unchanged. If it is true progression, it usually is not subtle: it roars back with a vengeance.

I had not thought about my cancer progressing that much during the summer. I mostly felt fine, and had a nice balance of work, family, and rest. But on that 8/16/16, all the emotions came back. The news from the neurooncologist was not even that damning. She was 70 / 30 sure that this was inflammation, not progression. However, they were going to discuss me at Tumor Board and do an early repeat MRI (#8 if you wish to count along with me). I just wanted to continue on with the current plan of pembro every 3 weeks, temozolimide pulse every 4 – 5 weeks, and mind my own business. I certainly did not want a group of doctors discussing me behind closed doors at Tumor Board.

When they gave me the schedule for my early repeat MRI 9/6/16, reality came back. That is the first day of school for most Michigan schools, including East Grand Rapids Public Schools. I have a 6th grader, 3rd, and 1st. The fourth, Mia, is starting preschool a week later. This is nearly sacred day for those with kids in schools. I love the autumn with the beautiful Michigan weather and energy of a new school year. Instead of that first day, I would be on the road, driving to Chicago before the kids were up, returning after they were back from school. And it would disrupt everybody that would accompany me as well. The likely pseudoprogression lead to real inconvenience. And if I had real progression, the chances of seeing another first day of school would drop significantly. So all the emotions that I held in check during the summer just came out. I hugged my infusion nurse Lilly and started crying in the hallway, out of sight from family. It is nice to be in Chicago, to separate my work life from my providers. I can just let go, and then come back to my office the next day without anybody seeing me like that (although my cardiology Nurse Jane caught a glimpse).

“It’s the first day of school,” I said to Lilly, as if that was the biggest problem.

“Take a few deep breaths. We can change that,” she said.

Oh, that ’s right, these things can be changed. For the first time in a while, I felt helpless with a very scary cancer. I was so used to every 3 weeks in Chicago on Tuesday, a different day or date seemed out of the question.

I didn’t think “Why me?” because I know there is not an answer to that except a vulnerable host (me) with a random series of changes in DNA. I also didn’t think “Why not you?” because it is an equally unanswerable question. Through this illness, I have become much more aware of other people with cancer, especially other GBM patients. There is no rhyme or reason why some people do okay, and others become sicker. It crosses athletes, religious backgrounds, a person’s willingness to fight, special diets (unfortunately, even Craig’s Cinnamax has failed to show superiority to placebo) or just how nice somebody is. We used to joke in residency that mean people do not die in the hospital, but that was probably just recall bias. The malignant cells do not care, and do not play fair. Cancer just sucks.

At Tumor Board a few days after my MRI, my ‘case’ was presented. There have been new guidelines published in interpreting MRIs in this new era that leaves room for inflammatory changes. There was unanimous consensus that my scan represented inflammation from either radiation or immunotherapy.

So, I dropped off my kids this AM at school, and will go for my routine Pembro infusion a day late tomorrow.

Figure: Pure Michigan vacation theme.  Upper left, carrying Queen Elizabeth for a bit through a Sleeping Bear Dunes hike.  Middle left, a scenic view of the park.  Upper right, trying foot golf out with Connor at the Grand Hotel.  Bottom left, Allison happy to pose for a picture (see below for a less enthusiastic picture).  Bottom right, crossing the straits of Mackinac with Connor.

 

Figure: First day  of school preparation.  Allison at her locker the week before school.  Middle left, Allison develops a cynical side with first day pictures.  Middle right, Allison at Connor at breakfast with Mia waking up later.

 

Figure: Redoubling my usage of the lucky cup.  Coffee in the morning, a nice beer stein at night.  Middle, full swing into the Alguire birthday season.  Ella and Gen, BFFs, usually share a party.  Featured watermelon shark by PCP.  Right, insert an inspirational message of your choosing.

What Cancer?

Hello again! I’m sorry I haven’t written to you in a while. Honestly, I have just been really busy. You know how it is during these summer months with the kids home. It’s not you, it’s not me, it’s them.  And writing a blog is incompatible with living in denial for the summer, but here we go…

I am working part time. Officially, it’s 50%. Now that my hair has (mostly) grown back, denial is easier with strangers. With new patients, I’m usually just Dr. Alguire, the cardiologist, not Dr. Alguire, the cardiologist with brain cancer. That is, if they do not google me first or stumble onto this blog. I doubt I am a better doctor, but I do have an eerie awareness of how quickly health can change.  It has helped my performance ratings, however. Anything to get a ‘yes’ response to our survey question “Likely to Recommend this Provider.” I do not advise brain cancer as a desperate approach to win approval, however.

I’m seeing my patients that were rescheduled back in November, December, and January with another provider. Understandably, they had to look around. Our relationship was certainly in question, and we had to open it up. Explore other options, if you will. I’m just glad that at my office we decided to disclose that I was on medical leave. Patients are always very curious when they hear their doctor is ‘on leave.’ It is sometimes a dual appointment, me catching up on the patient history, and then giving some of my own. Each day, somebody will see me for the first time since my diagnosis. I’m old news around the office, but for some of many old patients, the diagnosis is still new.

“Are you cured?” Depending on how I feel, I can chose my answer:

“Everything is going very well” which is true.

“Yes, well, kind off. Feel great today.”

But I can never bring myself to say “Yes,” even though I would like to play that role sometimes. “Complete remission, thank you very much!”

I just saw an 80 year old woman who had a heart attack and coronary artery bypass grafting (CABG) at Blodgett Hospital 35 years ago. Her husband died 25 years ago, but dating was not for her, didn’t want to be tied down. She still works at a countertop store and is going to Hawaii this fall to celebrate her 80th with a girlfriend. I told her there is no way I would’ve guessed she would be alive and thriving at 80 after having a CABG in 1980. Needless to say, I am not her first cardiologist. Or her second.

“I’ve retired all my doctors,” she proudly said, then let me know I wasn’t going to be an exception.

“All right, when you make 90 and I’m 50, we will have a little celebration.” And then I’ll dance with her in the office when she hits 100.

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As a distraction, we packed in a lot of sports in the summer’s first half: the Grand Rapids Triathlon (participant), the swimming Olympic Trials (fan), Rascal soccer try-outs (dad), Real Madrid vs Chelsea, and swim meets (dad again). We met several athletes in the last few months including Denzel Valentine, Dana Vollmer, Tyler Clary, Mel Stewart, and Michael Phelps’ mom and son (we missed an important generation in there). But wait, what about culture, you ask? I read most of the New Yorker’s cartoons this year. Also, read the title of every New England Journal of Medicine and JACC article to keep me up to date in medicine. Heck, I was even on the cover of a major medical journal not once, but twice!

Figure: Upper Left, hanging out with Deb Phelps.  Upper Right, Connor getting Tyler Clary’s autograph (200 M Back gold medalist 2012).  Lower left, posing with Dana Volmer (multiple medals), Mid Right, Mel Stewart.  Mel initially held Mia, but she was not happy.  She was still pouting.  Lower right, gracing the cover the the Annals again.

When you say you are going to Nebraska for a summer vacation, an explanation is often needed. Where else would you want to vacation in June? The 90 degree weather, easy access to highways, fresh corn. The Olympic Trials have been hosted in Omaha for the last 3 Olympic cycles. We packed up our 8 year old Honda Odyssey and headed west June 25th in a caravan with the my sisters’ families and parents. After about 7 hours of driving, we met again outside of Des Moines in the quaint town of Urbandale. We woke up once at 11 PM to find the air conditioner’s programming was off, and instead of cool air, we were getting heat. After the front desk staff tried a few mini-repairs, we just opened our door, cooled it out, and turned everything off. Iowa in summer with no AC or fan: priceless. Someday it will be a good story, I thought. Not quite yet.

The Olympic Trials were simply the most entertaining sporting event I’ve ever seen live. On the first day, Ryan Lochte swam the 400 IM. He was the first seed going into finals, but looked terrible in finals, ending up 3rd. Turns out, he had a groin injury. This is the same event Michael Phelps has stopped swimming because it is so grueling. This is the same event that my niece Kathryn has the 13-14 state record and placed 3rd in sectionals behind two collegiate Ohio State swimmers, breaking her own state record again in the process. The winner, Lindsey Clary, actually made the final at the Olympic Trials. Scary fast that kid.

The kids were just as excited to get autographs and pictures as watch the swimming. In this house, Steph Curry, Messi, and Missy Franklin are all considered equals in stardom. Ryan Lochte is my favorite elite swimmer. Not because he is the best, or is the most insightful (please don’t see “What Would Ryan Lochte Do,” just a disaster of a reality series), or his many selfies in a Speedo on Instagram. He has the misfortune of being in the same generation of the greatest swimmer ever. Michael Phelps has put a lot of swimmers into retirement, but Lochte just kept racing him. Only Ryan Locate could step on Michael Phelps’ heal walking out onto the Finals of the 200 IM at the Olympic Trials and get a smile. He is just pesky and persistent.

With Mia starting Goldfish swim school, all my kids swam this summer. Allison did the IMX challenge at Jenison which is a series of strenuous events. Most kids just try to keep it legal, finish each event, and get a trophy at the end for completion. After day 1, we found out via MeetMobile (a swim app) that Allison was DQ’d on her breaststroke turn on a nebulous rule. I had to tell her, and she was very disappointed (read: crying). The next day, she DQ’d another event due to a similar ‘problem’ (my unbiased opinion is that the rule was interpreted incorrectly). After the second event she DQ’d, her coach gave her the best advice I’ve heard this summer.

“Ahh, who cares?” Coach Lynn said.

Exactly. Whatever. A little perspective is needed sometimes. And Allison did not want to make a big deal of it.

It reminds me of coaching my niece Mary Violet got after a poor soccer performance by her whole team. 

“Just flush that one down the toilet.”

Sometimes there is just not much to say. No further analysis. No more thinking about it. Just get over it.

The night before the meet, Allison consoled me, “I am so used to not getting state cuts, I think I will be fine if I don’t get any.” But after a few days of taper, and putting on a suit that looked like it would fit an American Girl Doll, she got a few.

The summer swim season concluded successfully with a few state cuts for Allison, and Connor even participating in two 9 – 10 yo relays.  Each made the podium in the relays.  And even more impressively, the EGRA Waves took 3rd overall in the meet.

Alguire Swimming Montage

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Staci’s brother and family came up from Texas bringing their four, and my kids’ only male cousins. They had a great time kayaking, hunting for turtles (catch and release), hitting all the Grand Haven favorites, and just constantly running around. I never knew who would be sleeping at our house, and sometimes it was just Staci and me after multiple sleepovers were arranged.  That is a vacation!

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Nap update: In the summer, my naps have not been quite the same. I’m doing more of a coffee-nap. The summer has certainly thrown out the old routine of quiet afternoons with 4 kids in the house. And Mia’s napping days are numbered since she now stays up until well past 10 PM after naps.

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So I continue to go to Chicago every 3 weeks for Pembro and take my chemo at home for 5 consecutive days on 4 and 5 week intervals. And I don’t wrestle with the big picture much, just what’s next.  Pembro works better in some cancers (lung) if they are PD-L1 positive.  I have no idea what my status is, and I plan to keep it that way for now.  Wouldn’t matter with my trial, nothing I can do about it.  I mentioned denial at the top. It is not denial, it’s just selective consideration.  We are now considering where to vacation next.

Figure: Left two, my ride to Chicago 7/26/16.  Had to prove to my section chief Jeff Decker I was actually getting treatment in Chicago.  Middle right, Connor and me at a soccer game in the Big House.  Right: Kyle Williams, Dad, Connor and me ready for the game.  We got the full European soccer experience with a few hooligans behind us, spilling beer and profanities all over us.

Ambiguities and Anniversaries

There is black and white in medicine, but mostly gray. Consider even the most basic question in cardiology: should a patient with no history of heart disease take a daily aspirin? Aspirin is an old therapy, possibly even dated back to ancient Egypt (do you need to cite Wikepedia?). We’ve had plenty of time to study it. The question sounds so simple. Currently, the United States Preventive Task Force (USPTF) recommends low dose aspirin for people 50 – 69 that have greater than a 10% risk of developing cardiovascular disease within 10 years (calculate your own risk). For people outside of that age bracket, they found insufficient evidence to make any recommendation. Simple, right? But the 2012 European Society of Cardiology guidelines do not recommend aspirin for primary prevention; the American College of Chest Physicians recommends it for everyone over 50. I tend to follow the USPTF, but you can see why patient input matters as well. Aspirin decreases risk of heart attack, but increases risk of bleeding. Now, who should we screen with mammograms? Women, primarily. After that, an even more heated debate…

Medical imaging of the brain is no different. There are some black and whites. My first MRI, for example, showed a large, white tumor with contrast enhancement. The immediate post surgical MRI was clearly different with a black hole. Black is good. However, right from the beginning there was still a rim of inflammation or scar tissue or residual cancer. Granted, 100% resection is not even possible with GBM unless you resect the entirety of the brain, maybe spinal cord, too. The residual cancer, in a weakened state, will hopefully respond to radiation and chemotherapy. But even from my first post-op MRI, I had some ambiguity that I had to get used to. I don’t look for normal MRIs, or cancer free MRIs, just ‘stable’ or ‘unchanged.’ My neurooncolgist Dr. Priya Kumthekar, felt my tumor measured the same size. The resection cavity (black space), however, has enlarged a bit, which she attributed to treatment effect. That’s the best possible explanation. The radiologist felt the residual scar / tumor ‘slightly progressed’ compared to prior exams, but still possibly post treatment change. Continued “close follow-up imaging is recommended.” Thank you, doctor. I am fine with ambiguity. I am also fine with completely obvious recommendation by a radiologist.

Basically, it is a 9 week vacation until my next scan. If it was unquestionably the same, or ambigious, it wouldn’t change my summer plans unless it changed my treatment. It won’t make the next scan any more or less of an event. I would not hold it against the radiologist for hedging, or my neurooncolgist for giving a false sense of reassurance. In fact, the next scan could show clear progression, and she could still be right about the most recent scan. So, with this ‘clean bill of health’ for 9 weeks, I will carry on with my summer plans of a few adventures with my family, swim meets, maybe another triathlon, and get back on the comfortable side of the examining table.

Figure: Left, for some reason, I was getting a lot more respect around the cath lab while supporting structural heart procedures.  I am wearing this lead again.  Right, watching “our” Warriors crumble against the Cavs.  No melatonin means Connor lasts longer than me.

Anniversary

On the evening of June 22, I asked Staci if anything was going on June 23rd. I had it off after a few busy days at work.

“Our anniversary.”

That would be 1-5. Fifteen. No ambiguity there. I did not mean to forget it, I just did not want to make a big deal, so I repressed it. I get a little uneasy nowadays about putting ‘special meaning’ on annual events. Here is the lamest excuse for not getting a present: I wanted to keep things the way they were, not act like this has some special importance considering my health. That would put too much pressure on a present. We have spent multiple anniversaries apart due to random scheduling, either because I was working as a resident / fellow or moonlighting at the Ann Arbor VA. I spent my last night as an intern on the inpatient cardiology service June 23, 2004. Actually, the last few years have been the exception and we would have dinner together. On June 23, we celebrated by going to a dual swim meet against Rockford Riptide. Fitting. Tonight, we just got back from a 3 hour vacation to downtown Grand Rapids (without kids). Anyway, including our 8 years of dating, this is actually somewhere between year 23 and 24. No big deal.

I have not been reading for the last week, engrossed in the ESPN documentary “O.J: Made in America” with Staci. See? It could be worse than forgetting anniversaries. Too soon?

Figure: Left, anniversary date at Rockford pool.  Upper right, it is sort of a break with only one kid in the stands with us.  Lower right: our downtown Grand Rapids vacation.  San Chez, Fro Yo, Biggby.

Anyway, I am not sure what the secret is for a successful marriage. She brings balance to my life. Unfortunately, she would recognize that as a quote from Todd Chassee (about his wife), but it is true. We have similar lifestyles and habits, quirks that offset and fit together. For example, she’s passionate about interior design and I don’t care. No compromising since she gets to decide. 4 kids? Sure, why not, I thought. She packs the lunches and the bags and makes the schedule. She is our chef (unless it’s omelets). She is our cleaning lady. She is our coach.  She is our family team captain. She is my beauty queen. She is my best friend and lover. Happy Anniversary and to many more.

Journal

I was inspired by a David Sedaris performance at Devos Hall to start a journal. Staci and I went as a mid afternoon date, and I thought I would just jot down a few notes on certain days. This could be called a journal. This could also be called disjointed thoughts that I could not make into a coherent post.
January 22, 2016
Day 1 at work, I’ve already had a few questions on “all natural supplements.” As long as you exercise, have a healthy diet (a ‘healthy’ diet is up for debate, but clearly not the typical American diet), don’t smoke, and take evidence based therapies, I am pretty flexible about supplements. No, I cannot recommend a dose of cranberry tablets, but I can recommend dried cranberries because they taste good. 1 out of 1 cardiologists typing this blog recommends it, but usually prefers the more expensive dried cherries (because they taste even better). How about a small handful a day? That sounds about the right dose. Same for cinnamon:

“Can I take cinnamon daily with my meds?”

“Um, cinnamon tastes pretty good, how about you put it on food, or a latte?”

Like many cancer patients, I have gotten advice from well meaning people, but sometimes it just doesn’t make sense.

“Make sure he gets pureed asparagus three times a day.”

I think asparagus is pretty good cooked wth a little olive oil (or grilled). Why would I want to puree it? Does it ‘release’ the cancer fighting chemicals? Or am I on a dysphagia diet now? I know it is doing something because it makes my urine smell funny.

January 30, 2016
Skin irritation from shaving my head in hard to visualize places. Staci popped a pimple on the back of my head. That’s gross; that’s love.

February 13, 2016
I had an ‘episode’ at the WMSL Conference swim meet, reminiscent of my original symptoms on the bike 10/29/16. Not sure what it meant, but not quite like previous partial seizures. I was at a swim meet Friday night, and again Saturday after a light work week. I just had some fatigue and felt like it would be difficult to talk, but I did not try. This was just my cancer saying “I’m still here.” Well, so am I (if I could talk back to it). Just needed to be a little more careful taking care of myself. That makes me think, is my cancer myself? I mean, can I personify it with a conversation, or am I just talking to myself? It has 99.9999999% the same genetic material as the rest of my cells. It grew from me. I’ll need to think about that before dramatizing another conversation with it.

April 1, 2016
“Horse Chestnut?”

“Does it taste good?”

That sounds like something that would be good to restore manhood ‘naturally.’ Unfortunately, it is supposedly for venous disease. They picked the wrong disease to market something called horse chestnut.

April 5, 2016
Spring Break in Mexico. 1 week of intense heat and humidity with no washing machine. The Alguires didn’t have clean and dirty clothes piles, we had a dirty pile and burn these clothes pile. You know when your previous dirty pile becomes wear once more pile? That was the last few days.

April 15, 2016
Read the Boys in the Boat by Daniel Brown. This is the story of the University of Washington crew team that (spoiler alert) won the Gold in the 1936 Berlin Olympics. It reminded me of my MSU days when a few crew athletes asked me if I wanted to join the team. I thought they simply recognized my athletic gifts: strength, endurance. No, they needed a coxswain.

April 17, 2016
Read an echo on a lady getting treated with Opdivo for her non-small cell lung cancer. This is an immunotherapy, similar to Keytruda (pembrolizumab). The echo showed a pericardial effusion, pulmonary hypertension, and her story revealed a middle aged woman that had progressive disease despite immunotherapy. I find myself cheering for others on immunotherapy, and discouraged when disease progresses. I wish this immunotherapy was the sliver bullet!

April 20, 2016
Let’s work on my sales pitch:  I want to tell you about a product that has really helped me, and that is saw palmetto.  Or, gingko biloba.  I am coming too late to this supplement industry, so I need to find a new twist. Oak bark? Just googled it. Already taken. Just think of anything in the environment, add supplement to the end, call it natural, and it is being sold. With the recent news, I goggled Gorilla supplement.  Dang, already taken.

Figure: Upper left, Gorilla supplements already taken.  Upper right, what a coxswain looks like amongst the rowers.  Below, my first haircut (in 8 months).

I can understand the interest in supplements. Meds are sometimes expensive, do not necessarily make you feel better, and have all sorts of warnings listed on them (average drug label lists 70 side effects on insert, but at least you know it was tested!).

May 6, 2016
Need a Mother’s Day present. I really need my kids to come through with art projects or cards from school.

May 8, 2016
Mother’s day. I really need to come up with a compensatory present for Staci’s birthday on May 27, 2016. I get two chances in May, and I like initially being counted out. A come from behind victory at her Bday after all hope was lost on Mother’s Day. The novelty of strawberry sour straws just isn’t cutting it anymore (same that they sell at Fortino’s in Grand Haven).

May 14, 2016
River Bank Race. I am all about goals, and being flexible about them. I had multiple goal times which shifted as the race progressed. Once the math was easy, I figured I needed to keep miles under 7 minutes to go under 1:40. Bam. New goal achieved.

May 15, 2016
Staci and I went to watch David Sedaris perform at Devos. This was a chance for West Michigan progressives and liberals to put away their differences for 2 hours and just enjoy his readings.

May 16, 2016
Yes, I heard about the Duke Polio trial. 60 Minutes played a segment on treating glioblastoma multiforme with a modified polio virus. This is not a vaccine, it is injecting polio into the the your head, into the GBM. They had a few patients featured on the show, some doing very well, but one died soon after treatment. This is exciting news for GBM, but also very early. When you know the first names of the patients that did well, cautious optimism is advised. The polio vaccine was given ‘breakthrough status’ by the FDA, but this can be confused with the layman’s usage of breakthrough. Breakthrough status has a specific definition by the FDA:

  1. Intended alone or in combination with one or more other drugs to treat a serious or life threatening disease or condition. Check. Craig’s Cinnamonax fits that criteria.
  2. Preliminary clinical evidence indicates the drug may demonstrate substantial improvement over existing therapies on one or more clinically significant endpoints, such as substantial treatment effects observed early in clinical development. Okay, there are a lot of qualifiers in that statement: preliminary, may, early.

If a drug gets deemed breakthrough status, the FDA will expedite development and review. The Duke team is invested in the maker of this polio virus. I have no problem with this, and 60 Minutes casually disclosed that fact. If this is a game changer, they should benefit financially. However, they may also be eager to promote the product as well. So, Go Duke! but I still don’t like Christian Laetner.

There was previously a vaccine for GBM that was deemed ‘breakthrough status.’ Every therapy for GBM will meet criteria number 1. Unfortunately, further study showed it had minimal value (also unfortunately, I have the tumor marker it was targeting with EGFR).

Figure: Left, Connor in the LBW race winning the first 100 meters.  Unfortunately, race was 400 meters. At least he ran to win even if strategy was off.  Middle 2: Miley also won the first part of the Doggie Dash before crashing, laying down and then just sitting in the water bowl at mile 2.  She still holds the course record, though (18:20).   Right, Connor at Cherry Cup with the River City Rascals.

May 18, 2016
I was interviewed for the Shelley Irwin show on WGVU’s the Morning Show. I told my story for a bit, and then she gave me the opportunity to ‘promote’ the imwithcraig organization. I think she had the impression that’s why I was willing to come on the show. So, after stumbling around a bit, our time was up.

Damn, that was my chance to introduce Craig’s Cinnamax, the all natural, gluten free, antioxidant rich, organic, cage free cinnamon product to help with whatever your potential ails. No, scratch that. Need to be more specific. It is a supplement for cancer patients to reach peak performance in races.

The next guest was Audrey Johns who really had something to promote with Lose Weight by Eating.

May 19, 2016
Ordered a selfie stick for Staci’s birthday. Probably not the compensatory present I was looking for.

May 20, 2016
Laura Franey, a cardiologist and partner, was asked how often it is okay to use cocaine. After some proposals and meetings, the official Spectrum Health Medical Group Cardiovascular Services answer is never.

May 26, 2016
A Camera. I’m brilliant and a great husband and father again.

May 27, 2016
Staci’s 39th birthday. See May 26 entry.

Figure: Summer has started.  Left, Connor and a captured baby snapping turtle, his favorite activity at the Constant grandparents house (he knew to get in cousin Tanner’s kayak).  Middle left, Sammy and Ella, getting ready for s’mores.  Middle right, Lily and Allison, 1 and 2 in the LBW 1 mile race representin’ Breton Elementary.  Right, John and Ella, nature explorers.

May 29, 2016
Finished A Series of Catastrophes and Miracles by Mary Elizabeth Williams and reviewed it on Goodreads. To get a sense for my tastes, I had to give 0-5 Stars on a series of books including the Catcher in the Rye, 1984, and The Great Gatsby, etc. Aren’t those books beyond a simple 1 – 5 star rating? Apparently, I like all of the great novels from the 20th century and Mary Elizabeth’s latest work equally. I also think Michael Phelps is a 5 star swimmer, but that is just my humble opinion.

I previously recommended When Breath Becomes Air by Paul Kallanithi. It is a beautiful book, written from a perspective of a tragically gifted surgeon with a terminal illness, and very aware of that fact. I could relate to the transition from doctor to patient and self examination. However, he is a bit full of himself. Mary Elizabeth is more real, going over the horror of cancer with humor.  After Staci read it, she looked at me and said, “I think you are going to survive.” That’s good enough for me.

 

Positive Splitting

The metaphorical road to the River Bank run was a long one; The literal road of the River Bank felt even longer. I signed up 11/2/16 at 5:33 AM, so I got the number 301. The first 300 must be reserved for elite runners because I do not know how anybody could have signed up before me. Todd Chassee, my original River Bank partner, wore number 302 (and broke the 1:50 this year). I was quietly hoping that if my race crashed and burned, he would just give me a head nod and run right by. No sympathy needed for this brain cancer patient.

I can’t say I ‘enjoyed’ the run. Far from it. It felt terrible, but a good terrible. There was no runners high at any point. I was running injury free for the last 3 months, mostly on a treadmill. I went through House of Cards season 4 with an average heart rate of 160 bpm. As the race approach, I eased up for about 10 days and felt ready for a good taper. The theory is that you stress your muscles and cardiovascular system repeatedly for a few months and let them rebound with higher performance. Taper too much, and you will slide from peak fitness. Taper too little, and you will just be tired at the race.

This training went way beyond what would be considered helpful for cardiovascular risk reduction. I was going slightly faster than previous years, but I may have already maxed out on my personal capabilities (my times were all within 20 seconds from 2013 – 2015 at 1:33). I do not really follow the published River Bank training guide since I believe the weekly miles are too much. I max out at 25 miles a week or so with interval training. I complement this with swimming at EGR Masters, Fzique spin, and light lifting.

Figure: Left, pre-race picture with Todd Chassee.  Middle, a taper run with Mia and Miley. Right, Uncle Pat found me at the start of the race.

After 10 days of putting the brakes on, I was ready. That was until I opened the fridge Friday morning and fell to my hands and knees with a back spasm. That’s what did it: opening the fridge. Once you near 40, apparently you need to be really careful opening a fridge.

After all this, almost derailed by normal middle aged low back pain. So I told as many people as I could on Friday that my back hurt, even a few patients.

“Your prior heart attack reminds me of my back pain this morning…”

I needed to set up a pre-race excuse. I mean, I was featured on Wood TV8 as a River Bank runner despite cancer therapy. There were soccer families that got their kids up for the 7AM 5K (Vances, Vanden Bergs). Janelle Coffey, an old friend from Grand Haven swimming, even got her running shoes on. Several colleagues and staff were present from the hospital. Relatives from Pittsburgh and Philadelphia. Friends and a mentor from Ann Arbor. I needed to be well enough to finish or have a convincing injury story.

I grabbed two ibuprofen and went to the pool Friday morning, my version of Yoga, but I could barely kick. Instead, I hopped out and hit the showers with burning hot water on my back. I also stopped at home to grab another 400 mg of ibuprofen prior to work.
“You don’t understand, this back pain is worse than delivering a baby,” I informed Staci later on Friday. Although I only got a “P” for Pass on ObGyn as an M3, I had seen way more baby deliveries than my wife and her mere 4. I am a doctor afterall. “And I can’t get an epidural.”

“Yes, dear,” she said, understanding my suffering once again eclipsed hers.

Allison, quoting my oldest sister Amy, just said “suck it up, Dad” after she heard me repeat my story to the Waves coaches on Friday night.

“Valium,” my PCP suggested, “It’s a good muscle relaxant.” Who gets calls from their PCPs on the Friday night with offers to write benzodiazepine scripts? I’ve never had a benzo (well, probably during surgery), so trying one right before a 25K may have been too much for this lightweight. They are not exactly performance enhancing, but more of a lubricant for procedures and life. And running fast includes running in a straight line from point to point. I’m not sure that could be accomplished on Valium.

“Decadron,” my local oncology consultant suggested. I have been fortunate not to need this steroid since November, so I have a leftovers in the medicine drawer for a rainy day (which also includes bottles of Zofran, Norco, Keppra, Trileptal, Namenda, and Temodar, but nothing to enhance performance). But then we remembered I was also taking immunotherapy, and this seemed like one too many drugs working on my immune system. Anyway, Decadron would have helped my first mile time, but I would have stopped at each station for several snacks, probably gaining 10 lb over the 25K.

So, another Motrin 800 mg on Friday at 2PM, 9PM, and 6AM with Tylenol and application of BenGay. I even filled out paperwork to see a chiropractor at the River Bank expo, but I had too many packets to pick up to wait around for a free massage and assessment (mainly counting on the free massage). There is just nothing you can do for acute back pain except analgesics and light activity (compared to the 50K David Chandler ran the same day, a 25K is ‘light activity’). After my personal cocktail of Motrin / Tylenol / BenGay, I felt okay Saturday morning at the start of the River Bank. I briefly considered the hole in my left frontal lobe, combined with Motrin’s effects on platelet inhibition and blood pressure, but my back felt okay. That was more important.

I tried to go out at my usual pace on that appropriately gray and cool day, trying to catch some taper magic. At mile 1, I thought I may still find a grove, but was breathing pretty hard. Miles 2 – 4 were just 5 – 10 seconds off my goal pace, but it did not feel right. I was holding on to a pace, but not comfortably, and nothing that would last for another hour. In previous years, I would need to restrain myself from pushing miles 2 – 4 too fast. Now, I was thinking this would be a nice place to stop. Despite dropping my pace for miles 10 – 15 for self preservation, I still managed to hold the last few miles under 7s. It was a good thing I did not stop until crossing the finish line, because I am not sure I could’ve started again. My leg and back muscles tensed up once not continuously in motion, and I limped past the finish. Done.

Until I stopped, the 25K did not feel like a big accomplishment. It certainly did not feel ‘epic’ running it. I was just acutely aware of every muscle for the last 7-8 miles, counting each mile off as I passed each marker. As I crossed through the finish, I had a bunch of family waiting and a few friends. This was a bit different from previous, since I would usually run through the finish and straight to my car and get to a swim meet or soccer game. This year, I went to my own after party.

After the finish, Todd reminded me early registration for next year starts in 6 months. We have had a tendency to form grand plans in the immediate afterglow of River Bank: New York Marathon, qualify for Boston, an Oregon race to the coast, etc, but that usually fades back to just running the River Bank. But, I’ll be at my computer in early November at 5:30 AM again. If I sign up, I’ll just have to do it. Too much Dutch influence around here to pay for a race and not show up. I wish I could also sign up for 2018, 2019 and beyond.

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The imwithcraig after party and fundraiser

The after party started in the exit shoot on Ottawa Ave The 5K community walkers mostly beat me to the line, and so I met my family, the Deckers, Mike McNamara (not to be confused with the more senior Rick McNamara who ran the 10K).

“I got a runner’s high just watching you,” little McNamara said.

“I am glad somebody did,” with a fist bump through the fence.

There were also a few wearing Team Craig / imwithcraig gear that I did not recognize in the delirium post race, but happy to give out hugs. Funny thing, the people I did not know often gave me the strongest emotional reaction. I have bottled up my emotions for a few months, not really needing them, but sometimes they were let loose at random times.

I get a lot of credit for things nowadays, sometimes not even partially deserved. For example, I recently received from the Spectrum ER with “Consultant of the Second Quarter” even though I did not do a single ER Consult in the Second Quarter. The same can be said about the fundraiser.

Figure: left, my undeserved ER consultant award.  Right, my sisters doing things for which I get the credit.

“Should we make the after party a fundraiser?” one of my sisters asked months ago.

“Sure,” I said.

And there you have it.

The fundraiser required a lot of time, effort, and money, mostly behind the scenes.  I just needed to run enough on the treadmill in preparation.  We had a great event planner who was considerate enough to not deliver Lily Carrigan Sisk until Monday (Krissy).  Courtney Kerry supplied graphic design, social media support, and photography.  My sisters did a little bit of everything. Lifestyle Kitchen offered a location, others had to order (and pay for) food, buy and serve drinks.  Many people purchased T-shirts over the last 6 months, all which contributed. A few people even rounded up auction items by just walking into stores and asking (Mary Springer and Lucia Steinlage).  The team is in place if you need to plan an event.

Race day, I just limped from my car to Lifestyle Kitchen Studio to find an awesome set up by some of the best friends, relatives and babysitters (the Hansons!) around. If I had to pay everybody minimum wage and buy the items at cost, we would have lost money.

“Northwestern? We had a fundraiser, and we lost $2,000, so here’s your bill.”

We were able to raise over $7,000 for the Northwestern Brain Tumor Institute. There were multiple generous individuals and businesses in West Michigan that contributed. Here is a poster that is certainly incomplete, but captures a bulk of them.

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Figure: our sponsors, surely to be updated when we remember somebody else…

 

Figure: upper left, Nurse Jane and me.  Upper right, Connor and me.  Middle left, med school friends.  Middle right and bottom, scenes from imwithcraig.

Figure: left, Nurses Dee, Jodi and me.  Upper right, Ann Arbor docs with Peter Hagan and Sara Saberi.  Bottom right: My high school girlfriend and me.

With that, I promise not to mention the River Bank for a while…