“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.

————————————————————————————————————————–

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.

———————————————————————————————————————————

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.

————————————————————————————————————————-

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.

————————————————————————————————————————–

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.

——————————————————————————————————————–

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.

———————————————————————————————————————-

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.

—————————————————————————————————-

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.

————————————————————————————————————————————–

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.

———————————————————————————————————————————

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.

——————————————————————————————————————————–

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:

IMG_8508

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.

 

IMG_7067

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

———————————————————————-

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.

—————————————————————————————————————

On a recent clinic day, every single one of my patients seemed to know my diagnosis. Cardiac disease does not follow a 12 month calendar, but we usually see stable patients yearly because 11 or 13 months just does not sound right. My clinic schedule is currently filled with patients that were supposed to see me exactly a year ago, but I was in the middle of daily radiation and chemo. A recent 85 year old patient had a heart attack 23 years ago, treated with thrombolytics without a stent (this would be unusual outside of rural areas nowadays). Since that time, he has had no cardiac events. He has probably outlived the need to see a cardiologist every year.

“So, how did you do it, Mr. F?” I asked, trying to make his drive worthwhile and fill the 20 minute appointment. With his success, he should be the one giving advice on treating cardiac disease. He admitted he was not that active anymore, but continued to hunt. He had a small game license, mainly going after squirrel. Okay, so now I am interested. I thought this may be a euphemism, but it was not. If you are wondering, the hunting season is in the fall, and the limit is 5 per day. Apparently, you can eat them, or at least he does (I guess you can eat most things). That is not advice I can give to the next patient, but I am sure squirrel meat is low fat and always free range.

Some patients are intimately familiar with my family and kids from this blog. “Is Mia still napping?” Ah, no, so maybe I should update her developmental landmarks: preschool, completely potty trained, no nap, learning to swim, has mastered the iPad, and feisty as always.

But mostly my patients that have had stable heart disease for years just say, “well, I guess I can’t complain…how are YOU doing?” Don’t worry, if things are not going well, you won’t be seeing me in clinic. Take my presence as a good sign.

Speaking of my clinic, new to my clinical practice is telemedicine. Spectrum’s program is called MedNow. I sit in my office in Grand Rapids, and have appointments with patients that are physically in Reed City. This is partially out of interest in trying something new, and partially to go back to a community that I developed a little affection for over the last few years. The exam has it’s challenges, but most diagnoses come from the history, and most of the exam comes from the ‘eyeball’ test.

Figure: Upper Left, Mednow with Margaret up in Reed City, me in Grand Rapids.  Upper Right, Staci and I made an extra trip to Chicago, taking an obligatory selfie prior to seeing Hamilton.  Bottom: Connor doing some handwriting analysis on the note from Santa.

—————————————————————————————————

I had my best dad moment of my the year on 11/29/16. This also involved small game hunting, but this species is federally protected. I just came home from a Chicago Pembro trip followed by a middle school swim meet. I was patting myself on the back for my cancer endurance. I picked up Queen Elizabeth at the Wealthy pool, and brought her to the EGR high school to watch Allison. Short on timers, I volunteered. That was not my grand achievement. After the meet, I did something only Dad could do in our house. I try to avoid reinforcing societal gender roles from our kids. Usually, I’m all for Nasty Women, Leaning In, or #imwithher, but some things are just for dads.

It was a pleasant fall evening, minimal clouds, crisp air. Warmer than usual. After we settled into our house, I was cleaning up the kitchen. That wasn’t the dad victory, either. I just put that in to show I share with (some of) the housework. I usually put the dishes away, and then Staci, much more meticulous, does a deep clean of the kitchen. Mia was already sleeping upstairs with her room partially opened.

“Mom!” Ella scream cried.

“Don’t wake up Mia,’ I whispered from downstairs to nobody that could hear.

“Dad…(something inaudible, maybe Mia is crying?)”

I hurried upstairs because Mia waking up would totally change my evening’s plans.

Ella looked scared and said, “something is flying.” She looked so surprised and scared, so I knew it was more than a moth, but it was pretty dark in the hallway. She may have tried to catch a moth.

This is when an intense soundtrack should be playing, but instead it was silent as we tried to keep Mia asleep. Ella and I walked into the hallway, but nothing was flying. We have an old house, so everything creeks upstairs. After a more thorough investigation of pictures on the wall, something did not match. There was a small, furry creature attached to the wall between Connor’s and the parents’ room. The little brown bat released from the wall, flew around a few laps, and landed on Mia’s half opened door. Supercharged on all the extra immunoglobulins, I went into action. The last time this happened, I was less than 10 years of age, and our parents were out of the house. We had to call the closest dad, Frans Jungslager, to come over, but that is a different story.

“Everyone shut their doors!” I said. Connor and Allison ran downstairs leaving their doors wide open. The older two hid in the mud room while Ella, sleeping Mia and Dad defended the house against this extra mammal. I grabbed a garbage can out of the bathroom, but did not feel good about it. I wouldn’t be able to see the bat once I covered it up. Staci finally came through and brought me a tupperware container (to the bottom of the stairs).

Ella’s door is right by Mia’s and the new location of the bat. “Is it safe to come out?” Ella asked, my only child that stayed cool under fire.

“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!).

——————————————————————————————————————

My second best dad moment of the year was volunteering during Allison’s science class a couple of times during dissections. As a mostly compliant vegetarian, I had no idea what I was looking at during the chicken wing dissection. A good cook would have been much more helpful. However, we did the sheep heart on 12/8/16. Fortunately, my colleague and cardiac surgeon at Spectrum volunteered the following day, so I was not upstaged by Dr. Tomasz Timek. My general cardiologist experience would pale compared to a great cardiac surgeon who holds human hearts in his hands daily. They asked me, “do you get to see real hearts?” Well, ultrasounds of them. Those are sound waves…never mind. Yes, I see hearts all the time! Afterward, the kids had a chance to ask questions, but they were all for the ENT doctor that also volunteered.

“How do you lose your voice?”

“How come voices are all different?”

Uh, hello, didn’t we just dissect a sheep heart? Not every question is a good question. Ask the cardiologist something!

 

Figure: heart dissection.  Yes, I helped more than my daughter.

————————————————————————————————————-

Since I am working less than before my cancer diagnosis, I have time to volunteer in the schools more (from never to occasional). I volunteered during dissections as above, as a substitute swim coach, field trips and mystery story reader. Most recently, I was interviewed for Mrs. Katie Michel’s journalism class at EGR High School as a guest blogger. I guess that it is when it was crystalized that I write this blog to tell this story in my own voice. I had several motivations in the beginning, from encouragement from family, extra time, therapy, but also to own the narrative.

I keep thinking about a quote I heard early after my diagnosis that was shared on my Facebook page by a friend from Ann Arbor (Elise Bruderly). It showed a picture of the University of Michigan professor Bruce Conforth, and it read “In the end, we’re all just stories anyway so just focus on becoming a really good and meaningful story.” Since I have been telling my story over this last year, I have heard from many of you on the street, in the clinic, or over social media with your own stories.

So, I will continue the blog through 2017. Less frequent posts when things are fine, more frequent if things change. Consider silence a good thing: I am just in the clinic seeing patients, playing with the kids, or hanging out with my family. Feel free to interrupt and tell your own story.

Figure: Left, Professor Bruce Conforth.  Not sure if the quote is attributed to him.  There was a similar quote in a Dr. Who episode after a thorough google search.  Right, never too old to give or receive bunny ears at a Christmas party.

 

 

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!