Brain Necrosis

I received some encouraging news on August 9, 2017 from my appointment and MRI in Chicago.

“We think that it is just brain necrosis,” said the neurooncology fellow.

Thank goodness. I have never been so relieved to hear part of my brain is essentially rotting, not growing. My ditzel did not significantly change compared to my previous scan 6 weeks ago. Although nobody can be certain, minimal change in 6 weeks is not consistent with Glioblastoma Multiforme (GBM). When GBM returns, it is usually not subtle.

For my patients, do not worry. I can still spell WORLD backwards (D – L – R – O – W) and count backwards from 100 by 7s (100 – 93 – 86 – 79 – 72 – 65 …). I should be good to go as a physician. If not, I can always run for political office instead.

I still need to repeat an MRI on an earlier timeline, but this is mainly to get back on track with my clinical trial 9 week cycle. Of course, every MRI is stressful, but this will just be the normal stress level, not 11 out of 10.

With that, the Alguires of Grand Rapids carry on through August, 2017, with a little more spring in our step. Before we left Chicago, we watched my niece Kathryn Ackerman (KK) on our phones take 4th at Junior Nationals in the 400 IM in a time faster than I can do it freestyle (not that it is all about me, but this is my blog).

July finished with Connor and Allison doing well at the long-course state swim meet, placing in several events. Allison qualified for a few Zone cuts, so we extended her season another two weeks. The Zone meet was in Wisconsin. After much discussion about crossing Lake Michigan by boat via Muskegon or Ludington, it was just too windy, and we drove around Chicago to Pleasant Prairie. Basically, the kids had a 4 hour crocheting lesson from Grandma. We made it to the pool, had a nice dinner at a Mexican restaurant, skipped and just threw stones into the other side of the lake, watched Allison swim, and tried to beat traffic through Chicago (with another 4 hour crocheting lesson on return). Our side is definitely better with sandy beaches and sunsets.

 Figure: Left, hanging out, feet on the right getting pembro.  Middle left, technology allowing us to watch KK swim live at Junior Nationals.  Middle right, EGR’s 9-10 state relay (Connor, Trent Tobias, Joey Collins, and Charlie Chappus).  Right, Pleasant Prairie Rec Center pool before zones.

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The Spectrum Health Cardiovascular Diagnostic Unit (we need a shorter title) went to the Grand Rapids Whitecaps game 7/26/17 for a group outing. Over e-mail, Mike McNamara jokingly (I think) nominated me to throw out the first pitch. A week later, I heard from the Whitecaps organization to meet by the the Bigby in 5/3rd stadium before the game. I am not going to say I was nervous, but that’s just because I won’t admit to that. There were 7 ‘first pitches’ that game. A few kids for their birthday and then a 90 year old who barely through it over his wheel chair. I thought I was next up, but then a 25 year old woman was called up and through a hard strike. “Next up, Dr. Craig Alguire!” Why couldn’t I follow the 90 year old? Those are my people. Trying to out perform the 25 year old, I threw it hard. After once bounce, the catcher caught it. It looked like a cricket pitch. Damn. I mean, darn. I mean, who cares? It’s just a stupid pitch.

My partner Mike Vredenburg’s wife, Rebecca, was looking at our kids, and asked if Ella was the one I called, “Queen Elizabeth.” Yes. After we were alone, Ella asked how she knew I called her Queen Elizabeth.

“Well, I don’t know!” I lied.

I guess she thought that was just between us. Apparently she does not know about all of you. I call her that once in a while for a few reasons. She was supposed to be the last child, and she wanted to be the youngest. “I used to be the special baby.” Well, she always smiles when I call her Queen (which is way better than princess). Also, Staci basically named our kids with my rubber stamp. But when she wanted Ella, I stood firm. Yes, but let’s put Elizabeth on the birth certificate. That way, she can decide later what she wants to be called. So it’s Elizabeth, or Queen Elizabeth, or Ella, or whatever you want to be called in the future. This is just between us.

 

Figure: Upper left, training for my first pitch with Mia.  Bottom left, even though I threw a lot of strikes to Mia, this mound is a lot farther from home plate.  Bottom right: My support crew at the game, Connor and his cousin Palmer Constant.

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We went to Grand Haven for the last two days of the Coast Guard festival, went to a few birthday parties, kayaked and hunted for turtles at Gary and Gail’s, and watched the moon eclipse the sun like everybody else. Mia swam 25 yards and THEN turned 4. Read a few books (currently Where the Red Fern Grows with Connor). After my last MRI, I decided I really needed to finish my continuing medical education credits (CMEs) in nuclear cardiology. I put that on the back burner until the MRI only showed necrosis. Oh, and went to Chuck E. Cheese with the kids. When is school going to start?

 

Figure: Traditional parade gathering at Aunt Joyce’s house.  Carnival and fireworks with cousins.  Selfie in front of one of Coast Guard Boats.  Porta potty, I think I can wait until I get home.

 

 

Figure:  Eclipses, swimming and learning to dive with cousins.  Riding a favorite birthday gift.  Finally, when you resort to Chuck E. Cheese, it’s time for the kids to go back to school.

 

 

 

Pseudoprogression (I hope)

On 6/28/17 at Northwestern, the preliminary MRI report was great. No change. Even did a little dance in the clinic. This was the Summer Scan — I did not have to get another scan until late August. I would do a couple triathlons, follow kids to swim meets, probably go up North somewhere. With the good news, I got my Vitamin P (pembro) infusion, and we went back home to our new normal life. Have a good summer!  Well, Thursday, 6/29/17, was pretty good.  So good, I don’t remember it.

I had a 1/2 day of clinic on that Friday.  At 10 AM, my cell rang. The caller ID came up as “Northwestern.” I often get calls from Northwestern, but usually 5 days before my appointments: automated messages where I “Press 1” to confirm this appointment, “Press 2” to cancel.  Seeing a call from Northwestern two days after a great appointment was not what I wanted to see.  Providers do not call with more good news after great news.  Brain cancer does not work that way.  Something changed.

“Hello?” I said, hoping for an automated message, or the billing department.

“Hey.  The finalized official report was different from what we discussed.  It suggested a possible change. A new ditzel.”

“Mmm.”

The actual MRI report stated a “new 6 mm focus of enhancement in the paramedic left superior front gyrus.” Ditzel is easier.

“Basically, we just need to do an early follow-up scan. This could be treatment effect, or possibly progression.”

Our celebration at the appointment was premature.  Something like this happened last summer. There was a scan that showed some changes which could have been growth or treatment effect (inflammation, scar, etc). However, I am kind of far out from radiation to really think it’s that.  It could be from the pembro because, well, nobody really knows what pembro does in brain cancer.  Maybe it causes ditzels.

“Okay, well, I need to see my next patient.” And that’s what I did. Took a breath, and called Reed City via Mednow, and did not tell anybody until after clinic. Too many questions, not enough answers. My nurse Jane stopped by my pod near the end of the day.

“Are you okay?”

“Yeah.”

“Really? You would tell me if anything changed?” Eventually.

Can’t sneak anything by Nurse Jane, but I tried. “Yes, of course.”

I had just powered through my last 4 patients without even thinking about the report. Since I did not know what it really meant, I was not ready to talk about it. I just wanted to go home.

I was basing a lot of big decisions on that Summer Scan. Do I do the Grand Haven Triathlon? Do I get a crown replaced? Should I get the vasectomy that was already scheduled?  I cannot really have a ‘maybe crown’ or a ‘pseudovasectomy.’ I did decide to do the Grand Haven Triathlon about 48 hours before the race. Since it always worries Mom, I usually do not share triathlon news until a day or two before a race.  However, we were going to stay at their house prior to the house, so I needed to give a 24 hour warning.  Even I cannot show up with a car full of kids and a dog unexpectedly.  They needed to stock up on fruit, cereal and soy milk.  Her prayers were answered when the Grand Haven Triathlon was cancelled due to a big storm and debris on the course. Dang, shouldn’t have told her.

My crown has needed to be repaired for several months. I already delayed it, and then delayed it again. It does not bother me, it just does not have a great seal at the base. I can’t help but make medical (or dental) decisions based on two criteria: 1. Will it make me feel better. 2. Will it make me live longer?

“How long will my crown last?” I asked at my last appointment, thinking to myself, “How long will I last?” Since the dentist felt responsible for the poor seal, the crown will be replaced for free. I scheduled it (in a few weeks).

But I did have an appointment for a vasectomy. I did not really think about it since you need to schedule 6 weeks in advance. The night before, I read the instructions.  Uh, shave where? As a former swimmer, I have shaved everything outside of a very small swim suit. The anatomy is pretty straightforward. I decided to watch a YouTube video of the procedure so I knew exactly what to shave.  Not a good idea.  I called the Spectrum Health Medical Group Urology at 11 PM to cancel, but I was shunted to the emergency line. Probably not a true emergency, so I hung up and set an alarm at 9:00 AM so I would not forget to call in the AM.  I did not need the reminder.  The upcoming weekend was too busy to carry around frozen peas with a Bill Bur comedy show Friday night and a two day swim meet in Holland.

“Do you want to reschedule now?”  I’ll call you…

So, in summary, I have an ambiguous MRI. This means no triathlon, but not by my choice. My crown will be fixed, but not me.

 

Figure: We had an outdoor meet in Kalamazoo in June.  Since it was sunny, and parents could be right on deck, I got a lot of great pics from my phone.  Upper left, Queen Elizabeth shows off her backstroke start in the sun.  Bottom left, Allison doing the 100 meter breaststroke.  Upper right, Connor swimming the fly.  Middle right, Allison swimming the fly.  Bottom right, it was freezing on deck at 8 AM.

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Otherwise, summer has been great. Mia learned how to bike without training wheels. Elizabeth bikes around the block multiple times with our neighbor, Claire. Connor bikes to swim practice at Calvin College. Allison comes out of her room at times to swim.

Since we had a weekend off from swimming in late June, we decided to go to the National Championship swim meet in Indianapolis. Since swimming is a true Olympic sport, it is essentially ignored the other 3 years. However, many of the Olympians swim at this meet for a chance to go to the World Championships in Budapest.

We were all excited to get on the road to make the Friday finals where our favorite swimmer Jacob Pebley would swim the 100 back. We love “Pebs” because he wears his emotions on his sleeve (or swim cap).  He is a world class swimmer, but not quite good enough to be a household name.  He was so happy to make the Olympic team in 2016 in the 200 meter back, he cried after the race in the water.  Then, in the post-race interview, he talked about his mom’s influence, and cried again (she died several years ago).  He is not the fastest backstroker from USA, and not many people know him because he ‘merely’ took 5th at the Olympics.

We hung out at the top of the stairs near the lockerrooms, and waited for the swimmers to exit IUPUI natatorium. With Mia out front, most every swimmer stopped for a picture and autograph. The swimmers know that once they take 10 steps out of the natatorium, if not named Michael Phelps, they would hardly be recognized. I think Jacob Pebley was most surprised to see a group of kids clamoring for his autograph. Mia, after getting a picture and autograph, came back shouting, “We got Pebs!”

The trip was perfect except some car issues.  When the battery light came on as we drove to Indianapolis, everything else seemed fine, so we kept up our pace for the Friday finals.  After two days, we moved our car out of the hotel lot with the battery light still on.  20 miles out of Indianapolis, 3.5 hours from home, driving through miles of cornfields, more lights started coming on. Soon, the gas gauge dropped to E and the miles per hour read zero. We coasted into McClure’s convenience store and the 2007 Honda Odyssey died.  On Sunday, July 2nd. There was not an auto shop for miles, and not an open one anywhere.  We had 5 kids (with a niece Grace), a dead minivan, and no place to fix our car or place to stay.  There was plenty of soda and frozen treats at McClure convenience store, so the kids were content.  We finally managed to get a rental car, and have our car towed back to Grand Rapids. Yes, that tripled the cost of the trip.  I mean, first brain cancer, and then a dead car in Cicero, Indiana on July 4th weekend?

That’s my story. Here are some more pictures.

 

Figure:  Hanging out at the top of the stairs, waiting for famous swimmers.  Upper left, Jacob Pebley (“Pebs”).  Upper middle, Lily King.  Upper right, Kevin Cordes.  Mia looks up to check this tall guy out.  Lower left, Rowdy Gaines.  Lower right, we looked homeless when the Odyssey broke down north of Indianapolis except for the Vera Bradley bags, swim shirts, and iPads.

 

 

Figure: Left, Connor and Charlie celebrate state cuts in the 400 free.  Middle left, Queen Elizabeth does not need to kiss this frog, she is already royalty.  Middle right, Mia has something to tell Deanne.  Far right, after mastering the bike, why not start driving lessons?

 

Early Summer 2017

School is finally out for the summer. Upgrade the status of my kids to preschool, 2nd, 4th, and 7th grades. When this whole thing started (I’m talking about Glioblastoma, of course), I had a 5th grader that was a safety for my kindergartner at Breton Downs.  Mia was 2 and would take naps with me in the afternoon.  Now, she is biking around the block, and I drink more coffee.

I am still working about 25 – 30 hours per week. This seems to be a nice balance between work, treatments every third week, and family time.  If an MRI shows tumor progression, I will likely be out of the cardiology office and spending more time in the neurooncology waiting room.  I was pretty fortunate after my first round of treatment (surgery, radiation, standard chemotherapy) to return to work, but maybe non-invasive cardiology is just not that difficult.

On my last Keytruda (pembrolizumab, or MK-3475) infusion, I learned two more things about my clinical trial. First off, there was another update about potential toxicities, and I had to sign another consent acknowledging these. When you have GBM, nothing else on the list sounds that bad if the treatment is working. Diarrhea? I can handle that. Fatigue? Who isn’t? An erection that lasts over 4 hours?  That’s not normal? (JK, that’s the Viagra insert).   A certain percentage will develop serious autoimmune disease. This is the most common catastrophic complication of immunotherapy.  There is a very low risk of cardiac toxicity which strikes home professionally and athletically.  I do occasionally put the echo probe on my own chest and am disappointed to realize my heart is normal.  My symptoms are being on the other side of 40.  The second thing I learned was that my clinical trial extends through March 2018 if there is no progression.  Fine. That just pushes out a decision of “What’s Next?” if things continue to go well.

Immunotherapy has been a hot topic in the fake news media and medical journals (i.e., New York Times and New England Journal of Medicine).  I prefer the fake news since it is usually anecdotes of great responders to immunotherapy.  We all like to read things that confirm our own biases.   In the NEJM, the data is more raw, including a June 22 article on nivolumab (an immunotherapy drug like pembro) vs. standard chemotherapy for advanced lung cancer.  The bottom line was no clear benefit, but immunotherapy probably better for cancers with higher mutation burdens.  These very abnormal cells can be recognized easier by the immune system if just given a little boost.  We will eventually need to tailor immunotherapy to specific markers with a combination of traditional chemotherapy, radiation and surgery.  Immunotherapy is no panacea.

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Participation Trophy

One of Connor’s final assignments in 3rd grade was to come up with 10 public policy questions to make a pro or con argument. After a slow start, we got rolling. Should bike helmets be required? Vaccines? (ahem, yes they should). Should participation trophies be given out? He has gotten a couple of those over the years, but now looks at his awards in his room a little differently.

“They are kind of dumb,” he said of the medals and one trophy for participation.

“I think it depends on the participation. If it was an accomplishment to compete and finish the event, then yes. If you just had to show up, maybe not.”

“I got one for ‘completing’ a rec soccer season.”

“Well, I got a participation medal for doing the 25K race.”

“Yes, but you are 40.” I didn’t feel like that is a barrier. We call that Masters.

“And that was a 25k” Very manageable.

“And you have brain cancer.” Humm, good point.  Maybe I’ll wear that medal to work.

I did not have my usual confidence going into this RiverBank run. I wanted to go at a pace that I could be comfortable at for 15.5 miles without a total decompensation. I tried to start at a comfortable pace, and was happy to see that Todd Chassee and I were rolling at just under a 7 minute per mile pace.  I was in better running shape last year, but felt much better this year.  At the halfway point, I knew I could comfortably finish, and so I picked up the pace, running a mile through the hills at about 6:20 min / mile.  Following that ill advised burst, I  settled back at 6:40s or so. When I passed runners I recognized, I tried to act comfortable, breathing slowly.  Crossing the finish line on Ottawa Ave, I got my participant medal and went to find Staci and the kids. No reason to look where I placed.  I knew I wouldn’t get a ‘real medal.’

After the RiverBank, we celebrated with our children by leaving the younger two with Staci’s parents, and taking the older two to a swim meet at Notre Dame. Don’t ask me why we were there on Mother’s Day. Staci signed up the two older kids. Tiger Mom. I felt pretty good after the race, but after driving for 2 hours, I could barely get out of the car in South Bend.

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Last day of school

I usually take the last day off school off. Just like the first day, it is essentially a holiday in our house. Since I am only working part time, it did not cross my mind that I needed June 16th off given my usual half days on Friday. At Breton Downs, the 5th graders all run out of the front door and into the parking lot, but well before my half day usually ends. It is a quick graduation jog from the school’s front door into the parking lot. Even without a ‘graduating’ 5th grader of my own, I often get a little dirt in my eye as the kids run out.

It was also tradition to eat Lucky Charms on the first and last day of school (until it became a daily breakfast). That was until Trump announced his first Muslim Travel Ban. How is that related? Very indirectly. In response to the proposed Muslim Travel Ban, some EGR moms suggested reading material.  This was to personalize their story, I presume (EGR is certainly a left leaning enclave in West Michigan).  Anyway, I read The Long Pitch Home to Connor, a story about a 10 year old Cricket player from Pakistan that immigrated to the United States and started playing baseball. On an aside in the book, he mentioned he could not eat marshmallows since they are not ‘halal.’ After we googled halal, Connor and I noted it was defined as ‘relating to meat prepared as prescribed by Muslim law.’ Marshmallows have meat? Well, marshmallows have the animal product gelatin. Gelatin is just a slurry of leftover collagen from animals that is boiled. Lots of gummy candy has gelatin — that is what makes it have such great texture.  Gelatin is made of the parts of the animal that is rejected in Oscar Meyer hot dogs, then it is boiled to make gelatin! Ahh, no thank you. **Trader Joe’s has non-gelatin marshmallows.** In summary, in an effort to educate Connor and myself on Muslim culture through fiction, we learned marshmallows were disgusting and the Lucky Charms went into the trash. Pass the Apple Jacks, please.

Queen Elizabeth was the only one up when I left for work on June 16th, so I grabbed a picture of her eating her cereal. Connor was asleep, and Allison was somewhere. I’ll try again next fall.

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Cancer Politics

As I type this blog at Starbucks while Connor is at basketball camp, I am sitting by two liberals having a discussion about politics, Justin Amash, and Hamilton. I realized I am such a cliche as they spout all the talking points I have thought and heard. Liberals are correct, but annoying. I cannot even imagine what a vegetarian liberal sounds like!  I also have a pet theory that Trump is actually a closet liberal. He is so outrageous with his views and incendiary comments, he is trying to activate the liberals / progressives.  He brings the most outrageous views into the light.

If I could no longer work, I would not receive health care from my job (crazy that health coverage is generally tied to a job, right?).  I would then need to go into the health insurance market and pay ridiculous prices due to this pre-existing condition called GBM. I would be either put into a high risk pool, or, even as a medically retired cardiologist, find it difficult to find coverage at all.  Obamacare is certainly not perfect, but Trumpcare will be worse in its current iteration (assuming the Senate bill resembles the House in any way).  And I’ll say this and stop with the politics: what is the Republican goal with health care reform besides ending Obamacare?  Quality coverage for all should be the goal for Americans.  Obamacare has problems, but cutting funding to Medicaid and adding pre-existing conditions does not sound like a step in that direction.  I’m starting to come around to a single payer system — it cannot be more complicated than the current system.

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GBM Friends

My good friend Chris Whalen was apologetic about his most recent MRI results when he emailed me. “At the risk of being your Wednesday buzz kill…” the email started. Oh crap. He has had progression on Avastin / Pembro.

He was the first person that I met that had my diagnosis. Actually had GBM. I heard from people that were X number of years survivor from an unrelated cancer. But Chris has been through hell and back GBM. He required emergent surgery, a prolonged hospital stay, and came out with some deficits, but not in his humor. That area must not be touched by GBM, no matter how aggressive. Or he fiercely guards it. He is holding on, and sets a great example of toughness and humor.

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Okay signing out for mid June in this delightful weather. And to my Republican friends, you know I still love you.  Here is your parting picture:

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Just in case you have not met the Alguires after all these blogs.

18 Months

First the facts: I am doing fine. I had an MRI on February 21st, and since this blog took so long to write, another one April 26th. To complete my 2 year trial, I need to have satisfactory results on MRIs June 28th, August 28th, and November 1st. After that, who knows what I’ll do for treatment. As I’ve said before, that could be the best difficult decision I’ll need to make in over 2 years.

The scans are not really a week of build up, and then sudden relief. I have a week of confronting I have this diagnosis with the scan somewhere in the middle. It is not the immediate relief you would expect. Once you consider all the possibilities the MRI scan could bring (stable, repeat surgery, different chemo, or unresectable), it takes a while to step back from that abyss. I need to slowly get back into my normal routine afterward, back on Option A. I cannot think or reason my way back. I just need to restart my daily routine: playing basketball with the Connor, watching Allison play Lacrosse, building Magna tile towers with Mia, or just hanging out with Queen Elizabeth. Exercise, work, say goodnight to my wife, and start all over the next day.

Staci reminded me in just over 2 years, we will have one in high school, middle school, and two in elementary school.

“They are growing up so fast,” she said, just like every other parent.

“Good. And if I could make it go faster, I would.” I could watch their lives at 2x, maybe even 3x speed and be content. Enjoy this time? Of course, but let’s keep time rolling forward. I’m racing against a timer of uncertain duration, and trying to push them along as far as I can.

The last few months have been a series of events that start to feel like a routine post Glioblastoma Multiforme diagnosis. I signed up for a 39 month lease for another GMC Acadia with a family discount from my Aunt Joyce. Why make any changes at this point? The salesman, Kenny, probably thought I was pretty morbid (or joking) when I asked if I died before the lease ended, what would happen to the car? (my survivors could bring it in). If I can’t drive due to a seizure, well, I can just go out to the car and listen to the Bose speaker system in the driveway. When Kenny said he could get me satellite radio for free for the first 3 months, I was sold. You just need to jump on that SiriusXM deal once the manager okays it from the back room.

Let’s see, I went to the Daddy Daughter dance with Queen Elizabeth (again). Russ’ for the perch dinner and milkshakes. One last (hopefully) bat cruised through the house for our third catch and release, this time down the road a bit at an undisclosed location. We caught this one in Allison’s room. She ran to our room, and I ran to hers after shutting all the doors. Another Grand Rapids Griffins’ game where Connor scrambled for a puck. It was also Star Wars night. If you want to people watch, that is an event. We also watched a few future Spartans at the MHSAA class A finals.

We mixed it up a bit for Spring Break going to Los Angeles (#LA2017). Our motivation to go that far west was to see Mia and Tai’s 6 month old twins, nicknamed Iced Lemonade and Owl by Mia. Yeah, I don’t know either, but their real names are Liam and Eila.

We went to a few surrounding tourist sites, but mostly the kids liked the pool (and especially hot tub) at the house we rented a Studio City. The three older ones gave Mia swimming lessons in the colder big pool, occasionally needing to jump in and save her (after everyone watched her struggle longer than any lifeguard would). You would think they had enough pool time in Michigan.

After my last MRI, we did a boys trip to Florida. The boys include my PCP, Connor, my dad’s friend Joe, and me.

And finally, I am running the River Bank run this Saturday, May 13. It will not be my fastest, but it will not be my slowest, either. My primary target is to be under 2 hours, maybe faster if I feel good (I’ll make it hurt if necessary to get under 2). But my primary goal is to enjoy a low key race. Not making a big deal about it like last year. Just parking the car in the Spectrum Health hospital lot and walking to the starting line like old times.

Since I have been lazy, below are a series of pictures. I’ll call it photojournalism or a scrapbook of our lives since the last blog, but mainly I just do not want to write too much.

Figure 1: Left, Queen Elizabeth picks out my tie.  Left middle, Mia joins the picture.  Right middle, a difficult selfie.  Right, canned photo at the dance.

 

Figure 2: Upper left, kids doing laps at NW Lurie Cancer center.  They could not go back to the infusion room, but they got their steps in.  Upper middle, family trip to NW for MRI.  Upper right, finishing up some Epic during infusions.  Lower left, reviewing my brain with Priya Kumthekar. Lower right, Mia negotiating the number of stickers she can take with phlebotomist Gloria at the Lemmon-Holton Cancer Center.

 

Figure 3:  Upper left, Connor’s basketball team.  Middle left, surrounding a famous long-distance swimmer from Grand Haven, Rosie Springer.  Bottom left, Allison finishing the 100 fly at the J.O. meet.  Upper right, Connor happy to medal in the 100 free at the same meet.  Bottom right, Connor’s relay (Luke, Charlie, Connor and Gray).

 

 

Figure 4: I seem to have a lot of Connor.  Upper left, Griffins Star Wars night and snagging a puck.  Upper right, figuring out how to blow dry hair.  Bottom left, gymnastics prodigy.  Bottom right: Sparty (and Connor, again).

 

Figure Malibu: Hold right there.  Never mind.  Right, a family selfie away from the water.

 

 

Figure Hollywood: Staci found her fav from high school.  Ella tries to keep her dress down.  Connor being Connor.  Right, the kids expressing their first amendment rights and my only hint of politics in this blog.  Who would utilize their own kids to make some statement?

Video: Kids teach Mia to swim.

 

Figure Liam and Eila:  Various combinations of Mia, Tai, our kids and theirs.  Allison was exhausted from babysitting and the transition to Pacific Time Zone.

 

Figure: Kids getting along.  Walking around UCLA’s campus.  Middle right, traveling with kids has some perks.  Right, excited to visit American Girl Store between LA and infusion.

 

Figure: upper left, instead of naps, we build towers nowadays. Upper right, I’ve learned that once you turn 40, looking up in pictures makes you look younger.  Thanks for the tip, Courtney, and Happy Bday!  Bottom, my first pick up and drop off with the new car.

 

Figure Florida Fishing Trip: Everglades, alligators, fishing trips with sharks, with dolphins following us home.   Finally, some old neighbors.

Miscellaneous: Upper right, KK’s bday party with her cousins.  Upper right, Magna tile tower.   Connor at the MHSAA state finals between GR Christian and Clarkston, cheering for future Spartans.   Below that, walking up Boyne Mt. at the Michigan Society of Echo conference with Mr. Rogers in his cardigan.  Below, giving the definitive lecture on aortic insufficiency all in 15 minutes.

 

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And a last one for anybody still sticking around.  I’m sure this girl has…

 

 

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.