Ambiguity Part 17

I had another MRI on April 11, 2018 at Northwestern.  I got the usual news:  probably ‘treatment effect,’ but cannot rule out some growth of the brain tumor.  

“Let’s repeat an MRI in 6 weeks,” said Dr. Kumthekar.   

I should just schedule these every 4 – 6 weeks and cancel if not needed.

I will not have tumor progression for lack of trying, but I am not sure what ‘lack of trying’ means in the setting GBM.  Same goes for ‘putting up a good fight.’  I can only take my medications as scheduled with Lamictal (anti-seizure and happy drug) and Vitamin P infusion every three weeks.  A recent trial in lung cancer patients showed treatment with pembro was clearly superior to treatment without it.  That sounds good to me.  Unfortunately, it only works works for some people in some cancers.  As far as I know, I drove to Chicago every 3 weeks for 108+ weeks for something that is equivalent to the other Vitamin P (placebo).  Placebos are generally nothing more effective than sugar pills.  However, I am not going to diminish the effects of Placebo on disease and outcomes.  About 35% of patients report a ‘response’ and / or ‘side effects’ to placebo.  If I just believe in Pembro, maybe it will help? 

GBM is so bad, researchers are just throwing stuff at it and seeing what sticks.  As I always like to think to myself, ‘there are a lot of new and exciting treatment options that haven’t been proven ineffective yet!’

So, I exercise to burn off my worries.  My longest run is still in the single digits due to a left quad injury.  I am in pretty good shape, but probably won’t run 15.5 consecutive miles until race day.   Sitting still is the most bothersome since I occasionally get some myoclonic jerks (random arm or leg movements) since my last surgery.  If I’m active, this just does not happen.  I ran 8 miles prior to my AM clinic on April 20th without a problem.  I had so many myoclonic jerks starting at 11 o’clock or so, I thought I was going to have a another generalized seizure.  This lead to a panic attack, and I was sort of shivering all over.  One of our NPs, Tania Pratt, sat by me until Staci arrived.  She suggested Staci should bring my Ativan.  Hum…good idea.  After some Ativan (since I haven’t carried it around for a while), we got something to eat, and I took a nap.  Sounds like a pretty good remedy for most ailments in life.

Since my seizure 12/21/17, I have been biking most places around town.  Once it gets warmer, I may even try to bike to work (to the hospital through town, not to the office down the Beltline).   Biking gives me a little more independence.  I will also bike to D+W to get my craft beer, and bike home.  I may get a few funny looks as a pack just beer into my backpack, but whatever.  I won’t judge you if you don’t judge me.

Figure:  Left, my lovely chef and chief in the kitchen.  Good thing I was assigned something easy on our Whole Food Plant Based culinary class.  Middle, my pembro partner locally.  Right, bumped into Elaine Milnes at the infusion center.

Here’s what happened at 1429 Ridgewood since my last blog.  We spent two weekends in a row at swim meets: the 12 and under state meet at Zeeland and the 13-14 and open state meet at Eastern Michigan.  Zeeland was a little small of a venue for a 12 and under state meet, and the Fire Marshal stopped by to stop the meet for over an hour as he checked things out.  And Eastern Michigan, the  pool, well, is just a complete dive (no pun intended).  Of course, at EMU, we needed to stay in a hotel.  The exercise room Rules of Use I liked the last line: Do Not Over Exercise.  Discontinue Use at the First Signs of Stress.  Well, don’t tell the swimmers at the state meet!

Figure: Upper left, one of several EGRA “B” relays that made the podium.  Upper right, Connor’s Medley relay that finished Top 16 (and didn’t DQ!).  Below, good advice except for the swimmers at state.

Allison and Connor had great swim meets, although Allison developed some respiratory ailment by the end of the meet.  All of Allison’s “B” relays placed somewhere between 7th and 9th where the top 8 ‘podium.’  I think she was proud of that.  Connor has the perfect birthday for swimming, and will probably take multiple podiums in his individual events next year (not to put any pressure on the kid…don’t tell him I said this).

Queen Elizabeth pretended to be Eleanor Roosevelt for a school project on great historical figures.  The good thing about having parents that are highly functional hoarders includes they have a costume for everything, including Eleanor Roosevelt.  I also took the Queen to the Sweetheart dance again this year with her little sister, Mia.  Once we got to the dance, I barely saw either of them.  I sort of teased Elizabeth about not dancing with me near the end of the dance, and she apologized to me later after reading to her ind bed.  Oh girl, that is okay.  I just hung out with a bunch of other dumped dads.  

Mia is playing soccer for the Little Rascals and could not be more excited.  Everyday she asks when her next practice or game will be (practice is always Thursday night, games always Saturday if she asks you).

Figure: Far left, Mia before her first practice.  Middle left, warming up with Papa before her first game.  Middle right, introducing Eleanor Roosevelt.  Far right, my two dates for Sweetheart Dance.

Oh, and we went to Bradenton Beach (island off Tampa) for Spring Break with my two sisters, two brother in laws, parents, and everybody’s kids.  We all stayed in the same house.  Despite 18 people staying under one roof, we are all still talking.  That is probably the biggest accomplishment of the week.  The Cousins, as they refer to themselves, had a great time, but I think they would have a great time wherever they were together.  They are divided up into the Bigs (Anna, Kathryn, and MV), Middles (Allison, Grace, and Rosie), Littles (Gen, Ella, and Mia).  Connor is just the boy.

Figure:  Upper Left, Anna holding Mia while jumping off the pier.  Lower left, the safest place in the ocean.  Upper right, watching Manatees in the rehab center.  Lower right, the safest place on land.

Another Figure from Bradenton:  Far left, My parents and me.  Middle left, Grandpa showing the Connor the proper technique for sharpening knives (much to the horror of MK).  Middle right, we were very good customers at the local putt putt.    Far right, Alli shows her allegiance before flying out of Chicago.

 

I am grateful for every day I am still alive, but greedy because I want more.  I am still exercising, working, and just hanging out with my family and friends with minimal symptoms.   I’m trying to end the family’s obsession with The Greatest Showman, but not very successful as I listen to the soundtrack while typing this.  Lead by example, Craig.  Can’t get much better than that 2.5 years after my diagnosis.

As Promised, the Viso Blog

I finished my 2 year clinical trial with pembrolizumab after a few scrapes, emotional bruises, and two new scars on my head (one from surgery, another from a seizure). That is 40 plus trips to Chicago which included labs, an appointment, and then a 30 minute infusion of pembrolizumab. All that took about 3 hours with 7 hours on the road. That’s not including pre and post-op testing or MRIs every 9 weeks (plus a few extra MRIs for questionable findings).

So, what are you doing now, Dr. Alguire? Well, I am so glad you asked. After consulting with my PCP (dad) and primary oncologist (sister), I will be continuing pembrolizumab off label.

I always said I would wait until the end of the trial to decide on my future treatments. Now, I don’t think I could do anything but continue. If I had recurrence off pembro, I would be kicking myself. When my primary oncologist prescribed it, Priority Health promptly denied it as an experimental therapy. Next, we applied to get it as compassionate usage directly from Merck. It was promptly approved, and so I can continue on the medication without paying for it (at $12,000 a dose every 3 weeks, it adds up pretty quickly). Unbeknownst to me, my Mom was thinking about selling my childhood house on Lake Avenue to pay for these treatments if not covered by Merck.

“I hate cleaning this big old house anyway.” Well MK, you gotta keep on cleaning.

Honestly, I do not know if it is actually helping me. In theory, with a high burden of mutations in my GBM, my immune system would only need a nudge to recognize these cells as abnormal and wipe them away. Yay for extra malignant mutations! In practice, it is really uncertain if it works in GBM or for me. There were only 4 patients in my phase 1 clinical trial. That is 4 as in four. Two of us are still without recurrence at the end of the trial. That’s 50% survival without recurrence at 2 years.*

*Not significant.

These drugs usually work really well in a small percentage of patients in other cancers (ie, specifically melanoma and non-small cell lung cancer). So, I will travel to Lemmen-Holton Cancer Pavilion, right across the street from my work at Meijer Heart Center, and get my 30 minute infusion. I can actually bike there, but I do not think Staci will let me for my first infusion. I may even be able to work on those days. Nah. I will still travel to Northwestern for my MRIs, but that will be every 2 – 3 months or so.

Figure:  Upper left, an old picture of Connor and me while I get my infusion.  Bottom left, best nurse ever, Lily Santana. Right, Chicago from the 21st floor of Northwestern University (the oncology floor).

Viso

In other news, I had several visitors from Ann Arbor: Sara Saberi, Scott Visovatti, Brahmajee Nallamothu, and their Uber driver, Peter Hagan. After a 2 hour drive from Ann Arbor, we went out to dinner at the Grove, and then back home for them. I’ve been replaced in Viso’s life with Brahmajee, but I am okay with that (you may remember Viso from earlier photos at my first surgery). I am actually happy for them. Brahmajee is a great guy. Hagan reminisced about days in the echo lab that made me laugh so hard, I started crying. It was about an article in the Ann Arbor News about a naked man at a local library and our discussion in the echo lab afterward. As he said, if you are explaining, you are losing, so I’ll just stop there. Trust me, it was really funny. Sara reminds me of my neurooncologist in Chicago: that’s the highest compliment I can pay to either of them.

So, there you go, Viso. You got your shout out. Thanks for visiting.

Figure: Left, the visitors from Ann Arbor.  Right, the last time I saw Viso was after my first surgery (with Shelley Schmidt on my left).

A Brief Note About my Blog

wordpress.com, the website that hosts my blog, gives me stats about who visits the site and where they are located. I’ve had about a 100 a day or so over the last few weeks. But I have had one visitor from Finland daily for about a month. Whoever you are, here is your shoutout, too.

River Bank 2018

Spectrum has replaced Metro Hospital as one of the title sponsors for River Bank Run 2018. 5th/3rd is still a title sponsor as well, but they no longer ‘own’ the race. In addition, Amway is a new title sponsor with Spectrum. What does this mean? Not a whole lot except as a sponsor, we provide medical support for the race. David Wohns was asked to represent SHMG Cardiology, and as any good leader, he delegated me as a adequate cardiology representative. I feel so honored at those meetings. My only condition was that I could still run the 25K. I’ll be available for cardiology care during the race if you are going about my pace, but Todd Chassee is an ER doctor, so probably doesn’t need me. Maybe we’ll wear our volunteer T-shirts while we’re running in case anybody around us needs help. After I finish, I plan to help at the end of the race for all those behind me. If you beat me? Well, don’t expect any cardiology care.

The key to running a really fast River Bank is three fold. Run it a couple of times to get used to the distance. Start out kind of slow, and try to negative split (go faster the second half of race then the first). Over a few years, start your fast tempo a little earlier in the race until you can run the same, fast pace (for you) the whole time.

The second piece of advice is interval training. Start and stop. Run as fast as you can for a short bit, and then rest mixed in with longer runs and tempo runs. We almost always do this in the pool, and I incorporated into my running. This training will maximize your endurance (or minimize your time).

The third piece of advice is to throw out the training plan as recommended on the website over the last few years. It is just too much running. Better yet is to cross train with biking, swimming, and weight lifting. Or, that’s just what I do.

Family Update

Let me take you back to October, 2015 when I was first diagnosed. Allison was 10, Connor was 7, Ella was not even Queen Elizabeth, yet. Mia was still a baby sucking on a pacifier(s). I really did not think I would feel this normal in 29 months. In fact, I kind of thought I would not feeling anything at all. Now, I am training for the River Bank Run (again). Recovering from a running injury (or just older). All is well.

Allison is doing well in school. I do not know what she does in her room at night, but seems to be working out okay. Connor, our most emotional kid, is swimming and playing soccer like a champ. He had the game winning shot in his last rec basketball game. This came after a wide open lay-up that he missed with about 45 seconds left and down by one. They got the ball back, ran the same play, and he nailed it on his second chance. He went from crying to jubilation over a short period of time. He also has the perfect swimming birthday in late March, right after the state meet. Not so much for my December bday Allison, and let’s be honest, girls swimming has traditionally been a lot more competitive in the younger age groups. Ella, or Queen Elizabeth, won the 25 free at the WMSL A meet and quickly shut it down for the year. She likes to be read to while she does her crafts at night. I cannot tell if she is really paying attention, but when I quiz her, she usually answers correctly. And Mia is just a craftaholic. She must get that from her Grandma Alguire.

Figure: Left, the 9-10 boys and 11-12 girls 100 IM champions (and cousins) at the JO meet.  Ella with her co-champion at the WMSL meet Kate Blake (Ella won the 25 free, Kate the 50 free).  Middle right, my sissies and me volunteering at a swim meet.  Right, Connor stops by after his 100 IM to get positive feedback from Staci.  He loves positive feedback.

Figure: Upper left, at Grandma Constant’s 90th birthday part, the youngest great grandchild stole the show.  Middle top, I went with Connor on his 4th grade field trip to Lansing to see the capital.  Middle right, my fat tire bike.  Lower pics: left, all the Alguire cousins.  Right, Connor has special time with Anna Ackerman.

 

In conclusion, all is well at our house.  There are no Stormy Daniels out there in my past that I have paid hush money too (that Staci knows about), but if I keep doing well, I may need to spice up this blog a bit.

MSU Basketball

Okay, where were we?  I had to glance back at my last blog to figure out a good starting point.  That was published 12/24/17 and titled “Seizure at Starbucks.”  I have a scar on my head like Harry Potter (imagine Harry Potter except 2 parallel lightning bolts).  These are from my personal Voldemort, glioblastoma multiforme.  I also noticed my right eyeglass lens couldn’t be completely cleaned. I guess you cannot completely wipe away a scratch.  I brought them into Family and Pediatric Eyecare Center down on Monroe, and they told me my lenses were still under warranty.  Yes!  I needed some good news after this seizure.

I started on Keppra (an anti-seizure med) in the Spectrum Butterworth Emergency Department on the winter solstice.  No driving, assuming nothing else happens (a big assumption with GBM) until the summer solstice.  Despite many kind offers, I have settled into a routine for looking for drivers. I look at the schedule, figure who is going to the same place, and text them at least 24 hours prior. Everybody has said yes so far with no complaints even though my house is not exactly en route for many drivers.

I was also given Ativan pills to take as needed from the ER. Intravenous Ativan is usually an acute treatment of status epilepticus (a persistent seizure), but I am not really sure what I was supposed to do with pills. They did come in handy after I went to see my neurooncologist January 10th.  GBM is just like ‘rocket surgery’ sometimes — very difficult to sort out subtle changes. We were told that I had recurrence, and then after Tumor Board, more likely just treatment effect.  Who knows?  I feel fine, just hyperaware of any twitch.  It was a good practice run for my sister, Katie, looking into alternative treatments and trials.  I have a 4 week follow-up MRI to help sort it all out next week.

I am actually in the process of switching to lamictal which is an anti-seizure with mood stabilizing ‘side effects’ (or maybe it is a mood stabilizer with anti-seizure ‘side effects.’) Dr. Kumthekar said she would just chart it was for seizures.

“Ah, you can say it is an anti-psychotic in the chart…I feel a little crazy.”

Okay, I did not say that, but this is my blog. Not even the president gets to call this Fake News.

Since I left Chicago without my infusion 1/10/18, I needed to return a few days later to get my pembrolizumab. Fortunately, we were trying to figure out when we could take our kids to Chicago, so the timing was perfect. The girls went to the American Girl Store, and my parents and Connor stayed at the hospital ‘getting their steps in’ as my Mom likes to say. Connor even snuck into the infusion area (nobody under 12 allowed at Northwestern).  Don’t tell anybody.

I had to review my pictures to figure out what else happened this last month.  Maybe I am just still postictal (confusion after a seizure usually only lasting about 5 – 30 minutes). It must have been closer to 30 minutes because I woke up in the ambulance with my Patagonia fleece cut off.  Staci said I had a pretty blank stare in Starbucks.  I don’t remember her even arriving or talking to me.  However, that should have worn off by now.

Let’s see, Constant cousins from Texas visited, I bought a fat tire bike (my excuse was transportation until I could restart driving), went to an MSU basketball practice, redoing our basement and continued part time work and following kids to various sporting events.

On January 20th, Connor and I went to an MSU basketball practice with Roger Jansen, Darryl Elmouchi and their sons.  Darryl read my blog about going to Midnight Madness and struggling to get autographs, so he hooked us up with Roger and front row seats for a practice.  It is just mind blowing how big and athletic these guys are up close. Even the walk ons were all conference or all state.

I am back in the pool on Mondays and Wednesdays with EGRA Masters, and still on the stationary bike and treadmill on the other days.  Swimming was a bit unnerving at first after a seizure, but 3 of the swimmers in my lane swam in college and are currently physicians, so I think I am safe as possible.  Allison was part of an EGR Middle School record breaking 400 free relay at the middle school state meet (3:51 for those with any swimming knowledge).   Connor is staying busy with swimming, futsal, and rec basketball (I am an ‘assistant coach’ to Coach Glen only so Connor can be on Grady’s team).  Queen Elizabeth is gearing up for the “A” meet in a few weeks, and we are just hoping she will do her best events, not strategically figure out which events she will place better.  Mia is still going to Goldfish swim school, now in the last group prior to moving to the swim team there.  Since she goes at 11:30 AM on Tuesdays, and most kids are in school if they reach this level, she essentially has a private lesson each week.  Staci is busy managing our basement remodel.  The workers quickly realize she makes all the decisions around here about interior design.

So that’s where we are at the end of January, 2018, 27 months into this unrequested ‘journey’ with glioblastoma multiforme.  There is no definitive evidence of recurrence, but I have had a second brain surgery and a grand mal seizure.  I still feel fine on a day to day basis.  A little anxious, yes, but we have plenty of meds for that (not that there is anything wrong with that?).

 

 

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First warm weekend in January, and we were outside on the trampoline.

 

Seizure at Starbucks

I had a really good run.  No major events in the first 24 months of my struggle with Glioblastoma Multiforme (GBM).  I had a few ambiguous scans, but nothing that required intervention until recently. Working part time as a cardiologist and full time as a father and husband, I had a nice little routine.  I would go to work Monday, Wednesday, and a half day Friday, and stay at home on Tuesdays and Thursdays with Staci and Mia. Sometimes I even felt a little guilty about not working more.  Sometimes.

My November 1st MRI showed likely recurrence, but that just ended up to be inflammation / treatment effect on pathology slides according to two neuropathologists.  I recovered well from that surgery, almost back to 100% (but never quite). Each treatment takes you back a little bit. Nonetheless, I returned to work (3 weeks after my second brain surgery, thank you very much) on 12/4/17.
On 12/21/17, the winter solstice and darkest day of the year, I had a grand mal seizure at Starbucks downtown in East Grand Rapids. My first 3 seizures were on 10/29/15, and were all partial seizures. I was conscious for each of them, but could not talk. This one was the real thing.

I met Allison and Ella G (we also call her big Ella in contrast to our much younger and smaller Ella) at Starbucks after school. It took me a while to get there. Allison called when I was pulling out of our driveway, and I made the mistake of driving in front of the EGR High School when it was getting out. She called me again en route. “Yes Allison, I will be there soon.”
Starbucks was packed. We waited for someone to get up to snag their table.  I sat across from Allison with Ella G to my left.  Allison was just finishing off the second part of her bagel with a frappuccino on the side.  I told her that was her “dessert” for the day, no doubt.  I just starting working on a grande iced soy latte.
“How come you get a Grande?” Allison asked.

“Because I am sharing this with your mom…” I replied.

I had worked 11 hours on Monday (7:30 AM to 6:30 PM), 13 on Tuesday (which included a SHMG Cardiovascular meeting, 7:30 AM to 8:30 PM) and then drove to Chicago on Wednesday for a routine infusion with Todd Chassee.  On Thursday, I was tired, but had to do some make up exercise in the morning.   Needless to say, I was tired Thursday afternoon.
At Starbucks, my legs started twitching, but nothing too unusual for me. I stood up to stretch them out, but then felt the twitching rise up. Oh no, these were not just some muscle fasciculations.
“I am going to have a seizure,” I told the girls. My arm tensed up, and I saw the ground get closer, but never felt the impact. Apparently I hit my forehead on the corner of the table and landed on the ground right at the front of the Starbucks line. There I lay in a pool of my own blood.

This Starbucks is a central place in East Grand Rapids. For maximal attention, I was there right after Middle and High School were let out. I know I caused quite a scene because they had to shut down Starbucks for several minutes to clean up my blood.
The first responding officer was asking Allison all sorts of questions about me, many she did not know.
“How old is he?”

“I think 41.” She got that one right.

“Who is his doctor?”

“I don’t know.”

“What medications is he on?”

“Don’t know that, either.”

Finally, Emma Israels intervened. “Her dad has brain cancer, and she does not know his meds or his doctor.”

I just remember waking up in the ambulance and hearing Staci’s voice talking to the driver.  When did she arrive?
“Do you know the date?” the EMT asked me in the back.

“December 21, 2017,” I replied.

“Really good.” The bar was set pretty low at that point.

Apparently, Staci already asked me some questions in Starbucks, but I only answered with a post-ictal blank stare. I couldn’t remember that.

And damn, where is my iced soy latte? I only had a few sips. And Allison only had a few sips of her ridiculously sugary Vanilla Bean Frappuccino with caramel on top. $7 down the drain. And where are my glasses?  And EMS cut off my fleece in Starbucks!

At the hospital, they did a CT scan of my head with contrast. No subdural hemorrhage, and not really comparable to my old MRI which always had subtle findings.

“We can do an MRI, but that may take several hours, and you may need to be admitted for that,” said my ER doctor.

“Nope. I am going home.” Also, I just did not want arrange for my MRI from one institution to be sent to another. And I did not want to be admitted to any hospital.

I learned Ella G’s mom, Danche, had my glasses. I also realized I wouldn’t be driving for 6 months ): Michigan Law. We are already figuring that out, but I may be buying myself a fat tire bike for the winter.

The next morning, I got up early as always, and had my exercise gear on.

“You are not getting on that treadmill,” Staci said.

“Okay, well, but I am going to work.” Why not? I had a seizure, couldn’t drive, but felt fine otherwise that morning. Fortunately, I was working with Jeff Decker that morning at the Meijer Heart Center. I texted him at 6 AM to pick me up, figured the 10 minute detour would be a net benefit for him on overall workflow.

So that’s where I am on this Christmas Eve, 2017. Status post two left frontal lobe resections, radiation, chemotherapy, pembrolizumab, and now a grand mal seizure in the most public space possible in EGR.  I always had a flair for the dramatic.

 

 

Figure: 12/21/17.  Left, Allison moments before I had my seizure.  Middle left, looking pretty bloody.  Middle Right, looking much better (with my glasses!).  Right, Connor read to me Wonder as I fell asleep.

 

 

Figure:  Mia having a water at Starbucks, and impatiently waiting at the mall (and foreshadowing her dad’s fall).  Queen Elizabeth enjoying a cup of hot cocoa.  Bottom left, boys day at Star Wars.  Bottom right, a rare sisters’ moment.

 

 

 

 

Figure: Allison’s birthday.  Left, Mom and Mia skate.  Left middle, Ella uses a few too many trainers.  Middle right, Staci and Mia again .  Right, Allison and her 4 grandparents.

 

 

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Figure: My girls making cookies on Christmas Eve.

 

“Stop Messing with my Dad’s Brain”

Team Craig Update

I had repeat surgery 11/13/17 for what appeared to be recurrent glioblastoma multiforme.  As described before, I had a new, growing lesion anterior and inferior to my prior resection cavity, but within the original radiation treatment field.  Fortunately, the pathologist has the final say on most things, including whether there is cancer present or not.  In his or her opinion, there were no cancer cells.  Like most pathologists, you never get to meet them as a patient.  They are doctors for doctors.  That means, I can go back on Plan A with Vitamin P (pembrolizumab) every 3 weeks at Northwestern.  When Dr. Kumthekar said I could be back in the clinical trial, I almost cried, but not quite.

The last few weeks were a whiplash of emotions.  First, I heard there was likely progression on the MRI 11/1/17, and I would be removed from the pembrolizumab clinical trial.  I needed to let the pembro ‘wash out’ prior to considering other treatments.  We met Dr. Tate, and a repeat resection was scheduled for 11/13/17.  In the next week, we did pre-op testing, including a functional MRI (which is about 1.5 hours) and Neurocognitive testing (also 1.5 hours).

After the surgery, Dr. Tate told my family that it looked like a recurrent GBM, but not quite as expected. Post-op day 1, my neurooncologist stopped by to say she still thought it could be treatment effect, about “50 / 50.” What? Then Dr. Tate came back around that evening (remind your kids not to do neurosurgery since I saw him around 7:45 PM).  He still felt it was most likely recurrence. The reason this it matters is prognosis and treatment options.  Once you have recurrence, new and different therapies are needed, but it also starts a different clock.

A week after surgery, my phone rang at 10:30 AM on 11/20/17: Priya Kumthekar.

“Hello Priya.”

“I think I have some good news for you.”

“Uhm.”

“They did not see any cancer cells in your resection, but I am making sure Dr. Tate sent them all.  We are going to see if we can get you back in our clinical trial.”

So we sat on pins and needles for a few days, waiting for another round of contradictory opinions.  And then Dr. Kumthekar just emailed us confirmation on the Friday after Thanksgiving that we could be back in the trial officially.

When I told the kids, Connor said Northwestern should “stop messing with my dad’s brain.”  That is true in more ways than one.

Well, Happy Thanksgiving everyone!

Figure: Upper left, having my last pre-surgery meal at the Green Zebra on Sunday night, 11/12/17.  Upper right, walking with Staci a few hours before surgery in Chicago.  Middle right, my kids showing their support for Team Craig.  Bottom left, Mrs. Boersma’s class shows Team Craig support at school for Ella (in the middle).  Bottom right, I need to be careful what I ask for on this blog (autographed hat and picture of Ritzenhein via Mike Vredenburg).

 

Pre-op Testing

On 11/9/17, I did a long day of pre-operative testing. Functional MRI followed by neurocognitive testing. This was followed by an appointment with an anesthesiologist to see if I was healthy enough to have my only problem removed. Spoiler alert: I was.

I showed up for my MRI with a sense of dread. I knew it was going to be a long morning in the magnet followed by a long neurocognitive evaluation. I sat (well, laid down in tight quarters) while a MRI tech gave me instructions on what to think about. That’s difficult. Then, we did a series of object recognition testing where I would press a button each time I saw the same object. On the first go around, I couldn’t remember the first object I saw, so I just tried to remain consistent. I convinced myself it was the one with the backwards C and dash. The next day, I swam with Jeff Flermoen who tried to convince me that this was a real science. Got it, but I need to discuss with a non-radiologoist sometime soon.

After a short break, I saw Dr. Mackie, the neuropsychologist that works with Dr. Tate started with simple questions: name, date of birth, etc. And then the questions got a little harder.

“I am going to say some words, please repeat them:

“Carpet, hollywood, camouflage, green…” (okay, I am just making these up, now, but they went on for like 10 words). I couldn’t believe how many she listed, so I gave my best shot and got about 3 – 5. Not bad. And then she repeated them. And I got a few more. And then she repeated them, and I just smiled. That’s all I got for you.

And then she just kept adding numbers to a point where I would just try to remember the last couple. And then I thought, who are you to be testing me? Let’s flip this game around. Repeat after me, Dr. Mackie!  But that’s not how it works…

Figure:  Upper Left, serial compression devices keeping me in bed.  Middle top, art line and IV = more restraints.  Top right, finally walking post op day 1 in the ICU.  Bottom left, family support crew.  I was ready for the neurosurgical rounding team on POD #2 after shaving, eating breakfast, and waiting for them while sipping my Starbucks by the window.  Bottom right, my recovery at home with Stranger Things season 2 on the treadmill.

 

11/13/17 Surgery Day

The surgery itself was not that dramatic. No first person narratives this time. I was pushed back to the afternoon case. I met a large number of staff that were all great. There were 3 anesthesiologists including the attending, a fellow in neuroanesthesia (Arun), and a senior resident (Millie). All I could think of was that it must have been crowded back there between anesthesiology and neurosurgery. I also met a neurosurgical resident, Bill, but but I told him I may call him Billy after the surgery due to confusion with the senior resident anesthesiologist Millie. Not a lot of highly respected neurosurgeons named Billy in the midwest, I presume. They wheeled me back to the OR. We went down the hall, made a few turns, and into the operating theater. I took a lay of the land, they started giving me some propofol (I presume) and I left the conscious world for a few hours.

I remember waving to my parents on the way to the ICU and being strapped to the bed with bilateral serial compression devices, blood pressure cuff, art line, two peripheral IVs and a foley. I couldn’t even roll over. I was a bad ICU patient at about 3 AM, deciding it was time to swing my legs over the bed. With all those attachments, this was no small feat. The nurses came in, gave Staci a bad look, and set a bed alarm. I was to be a good patient for the rest of the night.

The next night on the floor, I was awakened at 3AM by the floor nurse. I had some pain meds, sleep deprived, but less contained to my bed. The nurse asked my name.

“Heather Slay” I said after some deliberation. The nurse looked confused. “Heather Slay” I repeated. The nurse walked out, checked the room number, and then came back in. Staci told me she just asked for my name. “Oh, Craig Alguire.” That was my 5 seconds of delirium. Fortunately, with all the sexual harassment scandals across the politics and entertainment, Heather Slay is a fellow soccer parent and GI Surgeon in Grand Rapids. I officially deny anything beyond that.

Figure:  Left, Staci and I at thanksgiving hosted by the Springers.  Middle left, Queen Elizabeth and her living furs.  Right, Connor and Staci showing off their basketball skills at a 24 Hour Buccaneer fundraiser.

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I am recovering well, trying not to do anything “too crazy.” That was the take-home point after surgery, or at least that’s how understood my discharge paperwork.

I am headed back to Northwestern this week for post-op appointments and follow-up testing. I am hopeful to get back on pembrolizumab soon and back to work sometime next week.

Figure: Left, Queen Elizabeth putting the star on the tree (Mia put it up at first, then we had to repeat it again for Ella since she felt left out).  Middle left and right: decorating the tree.

 

 

Figure: Left, Staci and me, hanging out at the Greenwell when all of our kids were at the Ackerman’s house.  Right, drinks and a dessert at the Grove.  After a beer at the Greenwell and my first ‘wine pairing’ at the Grove, I was more than a little tipsy.  I did not even touch my last two glasses of wine, but we certainly were celebrating a small victory in glioblastoma multiforme!

It Is What It Is

Wednesday, 11/1/17, was a long day. My 2 year survival party came to a halt on the 21st floor of the Northwestern Medical Center. My MRI showed the prior resection cavity remained stable, but a new mass anterior to this in my left frontal lobe continued to grow. It was growing slowly enough that it fell within the parameters of scar / inflammation / necrosis on the last few MRIs. Not anymore.

Damn.

My nurse practitioner, Meg Schwartz, called me about this ‘ditzel’ on June 30, but we were not really sure what to make of it. It grew minimally through July and August. For the last 9 weeks, it progressed to an extent that it could not be written off as inflammation anymore.

Let me introduce a new character to the blog, and the star for Team Craig on 11/13/17: Matthew Tate, MD, PhD. He is a neurosurgeon at Northwestern. Shawn Hervey-Jumper, the neurosurgeon that performed my first resection, left the midwest for University of California at San Francisco. As much as I love Dr. Jumper, UCSF is just not practical for surgery. Dr. Jumper recommended Dr. Tate. Since I had been going to Northwestern every 3 weeks for 2 years, I developed a certain comfort at that institution. We knew where to park, the best food spots, and the Starbucks locations (everywhere, but on the first floor).

The growth is small, and according to Dr. Tate, not in a very ‘important area.’ He also mentioned my prior surgery was in a ‘very delicate area’ and more challenging. A biopsy was considered, but he felt like it just made more sense to do a maximal resection since a few biopsies would basically take half the mass. Fair enough. This surgery will not be an awake craniotomy since it is not close to motor cortex (not close to anything that could be really tested while awake).

We arrived home and mentally, physically, and emotionally exhausted. Staci told me I had to ‘get it together’ for the kids. I mean, football players usually have 24 hours to get over a loss or celebrate a win, but I only get six? The kids have seen us come home so many times with good news, it was becoming routine.

Connor: (without glancing up from YouTube videos) “Did you pass your test?”

Me: Silence. Watching the YouTube video.

That got his attention.

Connor: (looking at me) “What’s wrong? Did you pass?”

If only MRIs were something you could prepare for, and either pass or fail. I would take Honors MRI. I walked out of the room to ‘get it together,’ and then came back to tell him we may have a chance to go to an MSU basketball practice, but this did not distract him.

Me: “Well, it has grown. I need a repeat resection. But the surgeon said it was pretty easy technically to remove, and not in an important area.”

Connor: “It’s your brain!”

Thank you. Tell that to Dr. Tate!

After we told Queen Elizabeth, she nodded, and asked, “what do you answer if you are not sure between yes or no?”

I did not know, but it sounded helpful.

“Yo. It is yes plus no.”

And then I went out on the trampoline with the kids. I find it easier to talk to kids in a less formal setting with a distracting activity. You can talk about things in bits and pieces. So we all jumped, careful not to bounce Mia too high (she sticks to the corner and does these little ‘butt bounces’) while trying to send Ella and Connor flying.

Figure: Upper left, lazy girls being dragged around the house.  Upper middle, you can now follow Northwestern Neurosurgery on all social medial platforms.  So reassuring that they are on Instagram and Twitter, not just Facebook.   They must be the real deal. Upper right, Connor made a special “Day of the Dead” mask in Spanish.  I don’t know what to say.  Lower left, fans of the EGR High School girls swim team (Allison was walking the finalists out).  Lower right, Connor and I watching MSU surprisingly beat PSU.  I certainly have reservations about football, but it makes for great television.

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I went to my own clinic the next two days, avoiding thinking about it too much. I had my scheduler remove my new patients for that day. I didn’t think I could focus on a new problem. At lunch, I had a chance to sneak out to D+W on Knapp for a quick bite with my section chief and colleague Jeff Decker. We bumped into my running hero Dathan Ritzenhein in the line at Starbucks. Among other running accomplishments, he won the 2017 River Bank Run.

Me: “Dathan Ritzenhein?”

Dathan: “Yes?”

Me: “Hey. Wow. This is my partner, Jeff. Jeff, Dathan still holds the high school cross country state record, and is the best runner ever from the state of Michigan.”

Misunderstanding ‘partner’ in 2017, Dathan asked, “Where do you guys live?”

“Oh, no. Um. I live in East Grand Rapids and Jeff lives in Ada.”

Anyway, maybe it is time to sign up for River Bank 2018, but no online sign up available, yet. GIddyup, River Bank 2018!

After work, I finally headed up to Nurse Jane’s desk on the third floor just for a hug and a cry since I was keeping my cool all day. Big sister Jane.  She said I needed to remain positive, but that was tough on that day.  I was still in my mourning period.  I returned a week later to prove I was okay.

After a few days of feeling sorry for myself and shell shocked, I started to accept my new reality. I became that crazy runner at MVP Sportsplex going all out on a treadmill, up to 12.5 mph for a minute or so (which was exactly Dathan Ritzenhein’s pace for full 25K in 2017!). Those treadmill sprinters must have problems, but it feels great. I swam the next morning, cutting time off the suggested intervals at EGRA Masters. I did not have time to wait around for intervals suggested by Coach Josh.

My last day of work prior to surgery was 11/8/17 in the testing center at Spectrum Meijer Heart Center. Nurse Cindy organized a potluck (no occasion is too small for a potluck in the hospital). This time, it was all vegetarian in honor of my last day. I received well wishes and good byes from many people. Finally, it was just me and Mike McNamara in the reading room finishing up at 6:30 PM. I wanted to get a selfie with him in the reading room, but when we were getting together, I just lost it. I hugged him for a while, balling my eyes out for no particular reason except everything, and he kissed my cheek in the most masculine, heterosexual, guy to guy way possible. I got that selfie after getting control of my emotions and walked out of Spectrum Hospital with him, hopefully not the last time as a cardiologist.

Upper left, Two runners just hanging out, talking about the River Bank race. I actually told Dathan my best time in the 25k for some reason.  Upper right, the start of my last day with Nurse Cindy and ‘partner’ Jeff Decker.  Middle right, wrapping up my last day with Mike McNamara after I gathered myself.   Lower right, my personal stress test.  Bottom, waiting for the anesthesiologist decide whether I am healthy enough to have my only problem removed.

I knew this story had a few more chapters. The last several blogs were all character development like those middle episodes in a Netflix series. Just filler. This protagonist apparently needs to another mountain to climb.

It feels like a cycle. It is cold and cloudy here in Michigan in early November, just like 2 years ago. Trout Steak Revival just released a new album (don’t wait for Rick McNamara to give it to you cheapskate doctors, go buy it!). I am in better shape than 2 years ago when I had my first surgery, training regularly and eating as healthy as possible. Staci practically has me on a whole food plant based diet with the exception of pizza weekly and local beer nightly. I hope it helps. I would celebrate another two years of this.

Browsing and Carousing

My two year anniversary as a glioblastoma multiforme (GBM) survivor is coming up on 10/29/17.  I no longer count my survival in months.  Just like a toddler, once you hit two, you can go by years.  Well, I’m two. October 29, 2015 was just the date of my diagnosis.  I had the cancer in 2015 in September, August, July, maybe June.  Certainly the seeds of abnormalities way before that.  Somewhere along the line, I had an insult to the glial cells of my brain, and their growth became unregulated.

Those insults, or risk factors, are not well defined for GBM.  One is brain radiation.  Never had that.  Well, maybe a little in the cath lab as a cardiology fellow, but pretty trivial overall.  Of course, my brain was fried daily for 6 weeks after the diagnosis, but not before my cancer.  A risk reducer is seasonal allergies.  The thought is that your heightened immune system will prevent any brain cancer from developing.  Never had that, either, but Staci does.  If I could do it all over again, I would chose mild allergies.  Maybe allergic rhinitis patients are suffering more than I can imagine. I just don’t have enough empathy, I guess.

Shawn Hervey-Jumper, my neurosurgeon, tweeted a link to an informative discussion about GBM on the National Institute of Health website.  It is easy to read, realistic, but also hopeful.  Of course, it starts with the usual ‘poor prognosis.’  No article on GBM article starts without that statement.  In the 1990s, the median survival was 8 – 10 months.  It is about 15 – 18 months now, with 15% of the patients surviving 5 years. Not great, but at least it is improving.  15% sounds better than a Mega Millions lottery ticket.  More like winning an NCAA basketball tournament pool (not at Spectrum, of course, since gambling is illegal).  I have won those before, but that’s when I lived in Ann Arbor amongst a bunch of Michigan fans and MSU went to 3 straight Final Fours.  Easy money.

Other than that, I still rarely read about GBM.  When I first was diagnosed, I did a cursory review in UpToDate, a resource for physicians to quickly read about some obscure condition and sound informed 1 minute later.  That was enough.  I got the idea.  GBM is bad and locally aggressive.  I do glance at immunotherapy clinical trials for various cancers in the New England Journal of Medicine.  This is easier because it is other cancers, and other people’s problems. Immunotherapy, and specifically Keytruda, is certainly not a panacea, nor do I know if it is actually helping me. Fortunately, it is not slowing me down.

Googling Myself

I googled my name the other day to see what comes up. After I got through Craig Alg, the first Google suggestion was Craig Alguire obituary. What? I can understand Craig Alguire cancer, Craig Alguire brain tumor, or Craig Alguire doctor, but who is looking for my obituary? Here you go: “Loving husband and father of 4 kids. Cardiologist. Gave generously, but always keep it anonymous. Tried to live as healthy as his recommendations to his patients. He is survived by his wife, 4 kids, and himself. In lieu of donations to some charitable organization (he has already given so much), you can write checks directly to Craig Alguire.” Maybe I’ll go to every computer in the hospital and Google “Craig Alguire sexiest man alive” until that comes up as the first suggestion. Spectrum computers will probably block that search. Never mind.

Once in a while, I do ask my elderly patients the secret of growing old. A 90 year old told me the secret to living until 90 was “No browsing or carousing.” I just wish I made a follow-up question, like ‘what do you mean, exactly?’  And, ‘why isn’t your husband here?’  Probably healthy advice, but not that fun for 90 years.  Maybe 80 years with some carousing would be better. I’ll need to define ‘browsing’ a little better before I commit.

Alguires in Grand Rapids Update

Staci and I went back to Chicago in late August for another short term follow-up MRI. After the good news, the night was suddenly more fun.  We stayed near the hospital, and kept our car in the hospital lot with a validated ticket.  We saved about $40 on parking #cancerhasitsbenefts.  We walked to a restaurant based on social media and my doctor’s suggestion at Girl and the Goat. Nothing against the fabulous restaurants in Chicago, but restaurants in Grand Rapids compare well.

The weekend before school started, we had friends visit from Los Angeles and Holland (Michigan). We have updated pictures below.  When school finally began September 5th, Allison started 7th grade, Connor 4th, Queen Elizabeth 2nd, and Mia another year of preschool at Mayflower Church preschool. Allison left on the first day of school without much fanfare. She wouldn’t let me take a picture, so I just got her biking down the driveway. She has found her groove in middle school as much as anybody can in that terrible social stew.

The late summer and fall is full of family birthdays, starting with Mia on August 17 and capping off on October 22nd with mine. Everybody upped their age by one successfully. On my 40th birthday, we dissed the kids and sent them home with Staci’s parents and had an adult party at our house. This year, Queen Elizabeth planned the party. She suggested Craig’s Cruisers for my birthday party (because I’m Craig, I guess). For breakfast, she suggested Anna’s House. Sure. Why not. I woke up that morning with a little headache, so it was nice to have a slow start. I can’t really do 3 beers and stay up until 11:00 anymore. 1 beer and 10 o’clock bed time is the usual limit for this guy. That cuts down on browsing and carousing.

 

Figure: Upper left, Allison’s first day of school photo.  Upper right, friends from Los Angeles.   Middle right, waiting for our table on my birthday.  Bottom left, Mia is growing up so fast.  Bottom right, picking apples at the Walters.

Mia is progressing in the pool at Goldfish swim school. She is in a group wth kids that look Allison’s age. Being around her siblings and cousins, she is comfortable and overconfident in the water. She was the youngest in my family to swim the length of a 25 yard pool at 3, but a little older than my niece.  No, not that niece (Kathryn).  It was Rosie who looked like a fish at 3.

Let’s see.  I did the Reeds Lake Triathlon September 9th. No excuses, but (which is the usual introduction to an excuse) I was not able to do as well as I wanted due to a knee injury.  It felt great swimming around Reeds Lake, biking and running, albeit a little slower than usual. And then Connor played multiple soccer games and Alli started her swimming routine.

 

 

Figure: Left, finding my footing in the muck of Reeds Lake.  Middle left, my support crew at the Triathlon.  Allison photoshopped her way into the pic since she was still sleeping.  Middle right, Mia and her lane at Goldfish Swim School.  Right, Connor’s soccer team trying to stay cool in the ridiculous heat of late September.

 

The sports team we are most excited about is MSU men’s basketball. Connor and I went to the MSU Madness practice 10/20/2017.  When I promised him I would take him 6 months ago, it seemed more theoretical.  He has an obsession with autographs, but everyone knows MSU will be good this year, so it was very crowded.  We got there an hour before the doors opened, and were behind thousands of people.  By the time we made it through the metal detectors, the lines were too long to get any autographs before the cutoff time of 9:30 PM.  We didn’t exactly cut, but we were not passive, either.  Nick Ward got up from the table and walked down the line signing.  I pushed Connor forward and stood back.  Who can refuse a 9 year old with an MSU hat, shirt, shorts, and socks? Then, we stood by the ropes, near Miles Bridges’s table.  We must have looked desperate, since a random Breslin Center staff asked who we wanted.  All of them?  I did not push it. “Uh, Miles Bridges.”  She took Connor’s ball, handed it Miles, and brought it back with his signature.  Happy kid = happy dad.  He got MSU’s two best players.

On the way home, we discussed Halloween and carving pumpkins. I thought I was decent with the knife (for pumpkins). Connor said about our neighbors, “Their dad is super good at carving…not to be mean.” I didn’t think it was mean until he said, “not to be mean.” Oh well. Might as well learn early about your parents’ deficiencies.

 

 

Figure: Left, Connor finds Nick Ward.  Middle, the lady in the baseball gave Connor’s ball to Miles Bridges for an autography.  Right, Sparty.

In summary, I feel fine, GBM is slightly less terrible than it was in the 1990s, I could’ve done better in the Reeds Lake Tri, still working several days a week, kids are doing fine, and I cannot tolerate even a little bit of carousing. As always, I have an upcoming MRI. And I am grateful to start counting survival in years. Two.

 

Figure: Left, It isn’t browsing or carousing if it’s your wife.  Right, the family walking around ArtPrize in GR in late September.

 

 

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.