From Wife, to Caregiver, to Widow

Craig’s last blog was in June and after that his health started declining. On October 11th, 2019, Craig passed away from Glioblastoma after an almost 4 year journey with the disease.

There’s a deep void. Even on the good days, the void is always there and I believe it always will be. There’s a tightness in my chest and a worry and pain that never ceases. Every time a song comes on that reminds me of Craig, or a picture flashes in front of my face, a memory comes to surface, the tightness gets stronger. The pit in my stomach deepens and the grief is overwhelming. It literally takes my breath away. This is what it feels like to lose your partner, your soulmate, the father of your four kids and the love of your life.

My very first memory of Craig was back in Junior High School, somewhere around 1988. It was the end of 6th grade and we all congregated in the auditorium for awards. I was excited to receive my one award, the Presidential Physical Fitness Award. While I waited, I noticed a cute, dark haired boy named Craig being called up for pretty much every award given. From choir to science, gpa, attendance and MEAP testing, he seemed to be awarded for everything. I was intrigued.

We began dating in November of 1992. Our first date was to the Grand Theatre in Grand Haven, MI watching Aladdin. We dated from 1992 until July of 2001 (with two short breakups for Craig to realize I was the one) and married in our hometown, surrounded by family and friends.

We were busy newlyweds with me teaching 4th grade in Romulus and Craig starting his residency at U of M. In December of 2004, Allison was born. We devoted every extra minute to her. A few years later, Connor was born and then Ella. When Craig finished fellowship we decided we wanted to move closer to home. We settled in East Grand Rapids and bought an old fixer upper, got a dog, and eventually, Mia completed our family. Life was good. Our kids were happy, Craig loved his job, I enjoyed staying home with our children and our marriage was solid. We were living the life we had dreamed of creating.

Then our lives were turned upside down on October 29th, 2015 when Craig was diagnosed with Glioblastoma Multiforme. Over the course of almost four years, I found myself morphing from wife to caregiver and eventually to widow. The initial news was shocking and painful, but I found peace in the hope that Craig’s young age, great health, the emergence of immunotherapy and his will to live would give us several more years together as a family. I’ll never forget the night we told the kids and Allison asked me if, “dad was going to die.” I told her what I did know. I promised that we would do everything we could to get dad the best care possible. Balancing truth and uncertainty was even more complicated when trying to explain this to our four children who were then 2, 6, 7, and 11.

Craig’s first two years of living with GBM were mostly good. Yes, we had to get through two surgeries, chemotherapy, radiation, driving to Chicago every three weeks and MRI’s every three months, but our day-to-day life remained mostly intact. We kept our goals in the forefront: to put our marriage and our children first, above all else. We spent our weekends at the soccer field, the lacrosse field, the basketball court or the pool. Craig also shifted from full-time to part-time, so most of our days were spent together. We took walks, watched tv series or movies, went out for lunch, had coffee or ran errands. We were grateful for our time together.

It wasn’t until the summer of 2018 that things took a turn for the worse. We got news that the tumor was growing and that a third surgery would be needed. Despite getting a trial drug during surgery, Craig’s decline in health began. He had fluid on the brain, balance issues, word finding difficulty, and lots of seizures. Life was filled with worry and pain for both of us and uncertainty for our kids. His health status evolved over the course of 4 years, but the most apparent decline happened from July of 2018 through October of 2019. Craig went from the most athletic, witty, smart, attractive man to barely being able to speak and bed bound the last week of his life.

As Craig’s health declined, my role began to shift. Some days I still felt like the wife role was intact. We would watch a movie, I would make his lunch and we would rest on the couch before I had to leave to get the kids from school. Other days, I was more of caregiver, helping him shower, dress, eat, and get into bed. One day I was more of a caretaker and then the next day he seemed more like himself and I became more of a wife again. To be honest, it didn’t feel like a sudden shift. I just did what needed to be done, day-to-day, and met the needs he had in each moment. Eventually though, we could not deny that Craig’s symptoms had worsened and we decided to call hospice. I crumbled knowing that my role as wife was limited and my role as caregiver was soon to be in full swing. Caring for four young, active kids and a husband with limited ability to move was too much for me to handle on my own. I am grateful to have had the help of Craig’s parents, who moved in with us for the last three weeks of his life.

Possibly the most difficult part of watching Craig die was knowing that our children were witnessing the same thing and feeling the same pain. In the last week of Craig’s life, our children took over as caregivers too. They wet his mouth, put chapstick on his lips, covered him with blankets, read to him, hugged him, laid by him, held him, and told him how much they loved him. As a mother, watching this unfold in front of you is the most grievous sight, but also the most amazing display of love.

On October 11th, Craig took his final breath. Watching the one you love die is incredibly painful and traumatic. At the same time, I am incredibly grateful I was there to hold him and say goodbye, knowing his pain was limited and he was not alone. In that moment, I went from wife and caregiver to widow.

Craig’s life was filled with wonder and love and adventure. I look back at our 18 years of marriage with nothing but extreme gratitude. Most marriages take a lot of work to stay strong, but I never felt like our marriage took much work. I can count on one hand the number of fights we had. Craig was always asking if I was happy and how he could make things better. He was an incredible father who knew the perfect balance of fun, love, discipline, and the importance of hard work. I consider myself extremely lucky to have shared more than half of my life with him.

We held an amazing Celebration of Craig’s life on Sunday, October 20th. More than 1,200 people gathered to celebrate the life of an incredible man. My dear friend, Courtney, helped to organize the entire service. My sister in-law, Kimberly, presided over the celebration. My nephews and nieces handed out programs. His very best friends, our nieces and our children, all spoke about his life and his impact on them. Craig loved music and in particular, musicals. The two of us went to Chicago to see Hamilton and then agreed that we needed to bring the kids back, which we did. Our sweet and very talented friend, Gray, played the best rendition of “Dear Theodosia” on the piano you will ever hear. It was a true celebration of Craig in every way.

So now I am a widow. A 42-year old woman raising four children on my own. Many have asked, “How are you doing?” The answer: I am doing the very best I can. I am putting one foot in front of the other and leading our children forward as I promised Craig I would do. They are my reason for getting out of bed everyday. I am realizing that even though I don’t want to do all of the things that I have do without Craig, I can. I have to. I’ve learned I can do hard things. Things I would have dreamed were impossible before Craig’s diagnosis.

There are so many things I miss about Craig. Much of my sadness comes from not being able to share the successes and failures of our children with Craig and from their grief in the loss of their father. I certainly grieve for our life prior to Craig’s diagnosis, when my greatest worry was working out swim carpools. The truth is, you do not get through this alone. My parents, my in-laws, my sister in-laws, my brother and his wife and my dear friends have all helped me—and are still helping—to hold me up and guide me as I navigate this uncertain future. I am incredibly grateful to live in a community that has offered our family a great deal of support.

I am amazed by the resiliency of our children. The grief is so overwhelming for them at times, but they are also finding joy in each day. I see so much of Craig in each one of them. They are smart, witty, confident, adventurous, loving, and kind individuals. Just like their father.

Allison completed her freshman year of swimming on the East Grand Rapids Swim Team with a division 2 State Title. She placed in the top 16 in both the 200 IM and the 100 fly and was a part of the 200 and the 400 freestyle relays that placed second. Craig would have been incredibly proud and would have so enjoyed watching her team win the state championship. She is currently swimming with her club team and will likely run track in the spring to mix things up a bit. She definitely has her father’s drive and his wit.

Connor had a very busy fall. He played flag football, basketball, futsal, and managed to swim a night or two whenever he could. Connor is happiest when he is playing or watching a sport. These days you can find him up at the pool, on the futsal court, or cheering on the Spartans basketball team. Connor has his father’s love for the Spartans and his competitiveness.

Ella is swimming with the Waves and recently got her first state cut in the 50 free. She continues to enjoy running and will participate in the LBW race this May. Ella has Craig’s easy going and kind demeanor and his fast running legs. She will forever be Craig’s, “Queen Elizabeth.”

Mia started the Waves swim team last spring. She loves the Wealthy pool, but finds the high school pool way too cold. She has also joined the daisy girl scout troop, which has been a lot of fun. She is currently selling girl scout cookies! Mia likes to have fun, just like her dad, she is always up for an adventure.

This Christmas break we decided to shake things up a bit. After the first week of the holidays enjoying our family, we hopped on a jet plane and headed to Marco Island with our friends, the Flermoens. As my dear friend Katie said, “It was kind of magical.” We all needed some respite from the cold of Michigan and Marco Island showered us with sunshine, sand, warmth, and friends. We are grateful for this time to relax and get away from the grind of our new normal. The only thing missing was Craig.

This blog offered Craig a great deal of support and therapy through his journey with cancer. It has reached so many of you and I am very grateful for that. To all of Craig’s faithful readers, I leave you with this: a list of some of Craig’s favorite things and some his favorite songs. He played them often and even in his final weeks they brightened his day. I hope you’ll listen to them often and keep him alive in your thoughts. Craig loved a good craft beer or a margarita, honey roasted peanuts, nurse Cindy’s cookies, Cracklin’ Oat Bran, Crystal Light Raspberry Lemonade, and Starbucks coffee.

Craig and I both loved listening to Kacey Muskgraves and her song, “Neon Moon” holds a special place in my heart as I think of Craig, the love of my life, my partner and my very best friend. As we navigate this life without Craig we promise to do our best to #livelikecraig in every way we can.  

#livelikecraig #brightereveryday #loveofmylife

So crack open a beer, pour yourself a margarita, sip on a Starbucks coffee, or snack on some peanuts (after going for a swim and/or a run of course) and think of Craig.

  1. “Dear Theodosia” Hamilton, Lin-Manuel Miranda & Leslie Odom, Jr. (Craig’s very favorite song)
  2. “Believer” Imagine Dragons
  3. “Elephant Love Medley” Moulin Rouge, Nicole Kidman, Ewan McGregor & Jamie Allen
  4. “Leave the Light On” Maggie Rogers
  5. “Shallow” A Star is Born, Lady Gaga & Bradley Cooper
  6. “Chicken Fried” Zac Brown Band
  7. “Come What May” Moulin Rouge, Nicole Kidman & Ewan McGregor
  8. “Time in a Bottle” Jim Croce
  9. “Merry Go-Round” Kacey Musgraves
  10. “Shape of You” Ed Sheeran
  11. “Neon Moon” Kacey Musgraves, Brooks & Dunn
  12. “Brighter Every Day” Trout Steak Revival (Craig’s theme song)
  13. “Never Enough” The Greatest Showman, Loren Allred
  14. “Whatever it Takes” Imagine Dragons
  15. “Walk the Line” Walk the Line, Joaquin Phoenix
  16. “Eternal Flame” The Bangles
  17.  “Memories” Maroon 5 (Played in the slide show at his service)

If you’d like to see the video from Craig’s Celebration of Life, use the password: brightereveryday in the box below.

Life is Good

My people are doing great.  If that’s all you need to know, stop reading right there.  You do not need anymore.  Life is good. 

First the bad news:  Mia took second in the Lakeside – Breton – Wealthy track meet.  Second.  We were all disappointed in her performance.  Someone that was almost a year older beat her.  I can’t believe it, and either can she.  Two more years to get her house in order, and she better make use of it ;). 

She started the swim season, and it has been a blast.  She is the youngest kid by nearly two years, but do not tell Coach Brandon.  Now, I do not want to jinx anything, but she is borderline “A” cut material.  The “A” meet is the championship meet.  After being wildly off in her first meet, she was within a second on her last one.  Meet number 3 will be pivotal since it is her final meet.  Or she will be 5 seconds off.


The other two won for which I’m grateful.  Connor was lucky to win; Queen Elizabeth is just good.

Queen Elizabeth, her first official performance in the 800 meter, slid comfortably in the pack. She was about 10 yards behind the front runner on the first lap.  I was worried, but I’m not sure if she was.  At the 600 meter mark (or whatever those track folks call it), she was even with her main competitor.  She found a new gear about halfway and then and started for home.  I have to admit, it was incredible.  She was the first place girl in the 800 m in the 10 years that I could look back upon.  I know everyone doesn’t do this meet, but that’s still an accomplishment.

Connor’s team continues to excel.  They combined a FIRE and Revolution teams to make a mega team.  Let’s just say FIRE had their drinks spiked with caffeine.  They won the JAGS cup, Grand Rapids Invitational Cup, and the Jr. State Cup.  Not to brag or anything.  Actually, I am going to brag: that was awesome.  Two overtime victories helped seal the Jr. State Cup.  This is in between flag football, basketball and, of course, swim.  I know, we are crazy.

I am sorry Allison.  Next time I will cover you more.  Every time I went to a game, fields were soggy and just plane gross.  I couldn’t get over that.  I just looked down at my new shoes covered in muck.  The summer swim season is just getting going.  I’ll cover you more then once you get going.

Connor still has a love of soccer, but we get him to swim once in a while.  Queen Elizabeth loves to run (well, she loves to watch Netflix on her iPad), but we can get her to swim most days.  Allison has learned to like swim again.  Mia has been to multiple practices, but she prefers the high school pool (Waves as she calls it) over the Wealthy pool (practice pool).  I think she just likes where the big kids are at.

Spring Break was awesome (have I said that too much?).  We went to St. Augustine.  My Springer cousins, they’re in-laws, my parents, and Paula Springer.  We swam on cold days and colder days.  Once in a while we got a reprieve with an occasional one or two warm days.  Otherwise cold.  

Let’s see, what else is going on?  Cindy Heffernan comes over to cut my hair because I am too embarrassed to get it cut myself.    The odd cut job on my head would be difficult to explain.  I would explain more than it would be cut.

We had a middle school and an elementary school graduation on the same day.    We have too many pictures with Allison in different combinations of kids.  I cannot fathom what high school graduation will be like.  

Tahquamenon Falls and Pictured Rocks were a revelation;  Oswald’s Bear Ranch not so much.  Our kids primarily liked the indoor pools at both places we stayed.  They were a revelation, too.  One had a slide that you could not use (it wasn’t between 4 and 10 PM).  Disappointment.

The cancer is back? We aren’t sure.  Another ambiguous scan.  I know it never left, but held in remission for a while after 3 surgeries, multiple medications (some of which I have no idea how they work).  I am going to get a repeat scan in 2 months assuming nothing happens in the meantime.  Sometimes I feel symptoms, but other times I know they are full of crap.  I certainly have right arm weakness, but not enough to be noticeable.

I am done with surgery.  Sure, they will discuss it, maybe even biopsy it, but to what end?  To know what I am dealing with stinks?  I was on an off label medicine called pembrolizumab, part of a research trial.  Now I am on an off-off label med called everolimus.  How will I know if it is working?  I will survive longer, but longer than what?  I am also on avastin.  That works for sure. I stopped temozolomide because, well, I could. It has never been shown to work in this setting.  I also stopped radiation because you can only get 10 treatments. 

So, life is good.  That’s where I’ll leave it.

A collection.

More shots.


I am losing my hair.  I am spilling a small amount of hair onto this keyboard as I type.  I  hope it will remain comboverable (is that a word?).  If you remember back to 2015-16, I was also irradiated.  Back then, I had a bald spot that grew, but then shrank enough so I could do a combover.  I am trying that now.  It basically kills quickly reproducing cells.  I was on a shortened course of irradiation for 10 days until 2/20/19.  That is because my brain can only take so much radiation and still have any Craig cells left. 

I received a “Certificate of Radiation” on my first irradiation.  I enjoyed it so much, I left it on my bed stand.  This time I received a “Congratulations.”  The first quote was kind of creepy for a note about cancer: “Out of every beginning comes a new ending, and out of every end springs a new beginning.”  On my “Congratulations,” I received some wacko “If you can dream it, you can do it.”  I do not know what to say.  Thank you? 

Figure:  On the left two, my somewhat creepy congratulations.  Middle right, getting my mask fitted.  On the far right, my traditional photo with my parents.

I am also taking Temodar (again).  This is chemotherapy light since it probably does not work with me, but I technically did not ‘fail’ it.  That’s a tough drug not to ‘fail.’  I was barfing from 2AM to 5AM the first night I took it.  That’ll get your attention.  Otherwise, my primary oncologist gave some tips on how to take it (Ativan, Prochlopazime, and Zofran) with a Temodar chaser.  So delicious.

I am also taking Pembro (again).  This is an interesting chemotherapy since it is not really chemotherapy, it is immunotherapy.  Basically, it revs up the immune system (I hope) and puts cancer in a bad defensive position.  It works very well in melanoma, small cell lung cancer and something else that I’m forgetting.  I do a lot of this these days.  What were we talking about?

New to the regimen is Avastin.  I know this works because my brain was scrambled before I took it, and this cleared it up afterward.  This showed immediate results;  This was a definite winner.  

Enough about side effects of my new treatment.  Here are some pictures of my kids.



Figure: Staci said I did not take enough pictures of her.  Case closed.

Figure:  You can figure it out.  Actually, All Ella All the Time.  Ella trying on her tech suit.  Ella driving to districts.  Ella swimming a beautiful freestyle.



Figure:  Left side, Connor playing futsal.  We like to say Connor plays the game, and Mia plays parallel to a game.  She just runs up and down the court without touching the ball more than necessary.  Lower left, Connor with his two grandfathers.  Middle right, Allison with her two closest in age cousins.  Lower right, our kids and their grandmother GG.

Kind of Sucks, But We Have a Plan

Once your Glioblastoma Multiforme has progressed, I got to admit, is a real bummer. It’s not like, oh darn, this kind of sucks. I mean it really sucks. I do not know if there is a STOP sign for progression, but certainly this has passed it. It has blown right through it. A few tears every morning, but otherwise grateful for all the support that has been showered on me. I know there are a few of you who still have not been touched by my writing, but those are few and far in between. Mostly, I get very positive feedback. JK.


Figure 1:  On the left, my initial MRI.  Upper right, my second MRI with vast improvement. Bottom right, my newest MRI with growth.

Here is my very first MRI.  Ugly.  30 or so MRIs later, the upper right demonstrates a significant improvement over my last MRI, but what wouldn’t?  The initial MRI just looks like scrambled eggs.   I had another follow-up MRI (this gets to be a pattern after 30 or so MRIs). This showed significant growth of my tumor. I do not think it could’ve been appreciated on the last one.  Does that make sense? 1. Terrible 2. Dramatic improvement, but truly better? 3. New growth. I am not so sure the last couple of scans didn’t show it, I just could not appreciate it with all the other changes. Also, the avastin should make everything appear better. How can you compare something that looks so bad vs something that looks dramatically improved? You cannot.

I feel fine for now. Actually, I feel well. Thanks for asking.

But first, the Alguire house. Where did we leave off? Have I said that too many times? It looks like mid-November was my last entry. Thanksgiving was ‘good.’ Christmas was ‘good.’ I’m not really sure what happened. Looking back at photos, we gathered at my sister Katie’s house for Thanksgiving. We celebrated with the whole crew plus Uncle Jim and Brad’s parents (the whole crew = all the cousins and their parents). Maybe Aunt Joyce and Elaine were there, maybe my in-laws, but maybe not. We went to Amy’s for Christmas (whole crew). Add the Jonases and Constants (Christmas can be exhausting around here).  We had our fill of Christmas.  All the Dorothy and Walt Alguire’s kids and grandkids were captured in one photo — that’s impressive. I mean, that’s just amazing. We went to Mom and Dad’s for New Years and shirked our responsibility for hosting any of the holidays. Maybe we will host Valentine’s Day or something. Anyone is invited.

Besides swimming (is there anything besides swimming this time of year?) we had a fire. Not a big fire, but something that could’ve blown up the house. We had Consumer’s Energy over here about 3 weeks ago, but could not detect any gas (it smelled like gas). We had the plumber here to detect any sewage (self explanatory). Finally, the fire alarms went off on the morning of January 12 at 5 AM. You would think this would be the end of our adventure. However, they advised calling an electrician that day to fix a faulty light switch. Our electrician, thank goodness, figured it out without too long of a delay. He felt the differential of heat on the laundry shoot and sensed Ella’s closet was too hot. I told him I didn’t think it was too hot. That was normal. I doubted this was a fire all along. When we did spot the fire hidden up by the drywall, I guessed the problem.  It was a fire. We called the fire department triumphantly back (okay, I wasn’t so triumphant) at 12PM to say you were wrong and come on back. We pointed out the active fire about to consume the house.

As if things could not get worse, Miley, our dog, died on the AM of January 30, 2019. I opened the door at 6:30 AM to let Miley wander out at her personal choice. She was often tired in the morning and slept in to about 7:30 AM.  This was not unusual.  Staci tried to wake up Miley at about 7:30 AM, and found her stiff.  She was a great dog, especially when you consider she never woke us up. She is in multiple pictures because she was always with us. She will be greatly missed.

I am getting repeat radiation, avastin, pembrolizumab, and temodar.  That should be enough.  Everything is riskier the second time around.  You may recognize pembro from the first time go round.  That’s an old friend trying to rekindle its good standing in our hearts (or brains).  I can get take it locally now as well as the other medications.

Otherwise, things are going well. Besides a fire, Miley dying, and GBM, things are going as well as could be expected. My people are still doing well.


Figure 2: Allison got her dog for the first time.  The classic photo of her chewing on Connor’s foot on the right.   Miley with her other parents, Deanne and Damian (Damian is only seen here).  They loved her just as much as we did.  Miley sort of gave up during our last race and hopped in the water.


Figure 3: My kids.  Ella negative split her 500 freestyle. That is when you start out a little slower and build into it. That is so not Allison’s style of taking out the 500 free as fast as she can and then holding on for dear life. Upon completion of her 500 free, Ella seen looking back at the clock.  Credit David Chandler for all these photos.


Figure 4:  Dorothy and Walt and all the Alguires you can name.


October 22 was not just another birthday, it was a 3 year anniversary.  I deserved it after 3 craniectomies, a lumbar drain followed by ventricular peritoneal shunt (VP shunt) and a blood patch.  That was earned.

Just prior to my birthday, I tried to sell some of my bikes online.  Then I realized that was just too depressing, and put my bike back on the trainer.  I am still trying to sell my mountain bike for free (616-206-8835) and a road bike for a few hundred bucks.  I assume people will inquire more about the free mountain bike, but I am just tossing it out there. 

On my birthday, I got my favorite present ever:  a Brighter Every Day book with pictures and notes from my family and many of my dear friends. That was delightful, and courtesy of Courtney (Stevens) Kerry.  I cannot believe some of the scenes she captured, but I was impressed.  I do not know how she tried to sneak into this blog, but she easily cleared the fences with that one.

What have we been up to you ask?  Well, a few things.  We went to an MSU football game with my parents, the Ackermans (except Kathryn but add on Chris) and my whole family.  Staci got us all tickets for my birthday.  This came in 2nd, not that I am ranking them (Michigan Swimming shirt came in 3rd from Amy, Katie’s fleece at number 4).  

On a last minute suggestion (4 o’clock on game day), Connor and I were asked to go to an exhibition game against Northern Michigan.  Connor is never happier than when he is at a sporting event.  Specifically an MSU sporting event.  It didn’t hurt that we had great seats courtesy of Roger Jansen:  3rd row in the middle of the parents’ section.  That was awesome, but technically not a birthday gift.  I won’t rank that, but it was a lot of fun.

Other than that, the kids are swimming, Connor is playing futsal, and lots of basketball.  These activities keep us busy on week nights and weekends.  During the week I have my normal routine.  Mondays my sisters come to visit.  We typically walk the lake and either grab some lunch or a coffee.  Tuesdays are breakfast or lunch with Todd.  We have checked out most of the breakfast places in Grand Rapids, including Denny’s last week.  Every other Wednesday I get my Avastin infusion.  Typically my parents take me as I have to be there before the kids are off to school and then I spend the morning with them. Thursdays Staci and I usually spend the day the together.  Sometimes we go for lunch (The Flermoens are our favorite lunch buddies), out for coffee, or run some errands, but most recently we went to the movies.  We saw A Star is Born, so now our afternoons are filled with the music from the soundtrack.  We just can’t get enough of Bradley Cooper and Lady Gaga.  Fridays are up for grabs and the weekends and nights are spent with Staci and the kids.  Oh, and I attended two Masters swimming practices this week.  I swam slowly.  There should be a ‘but’ in there, but there is no ‘but.’  I was just slow.


Figure 1:  Lower left, hanging out with Kenny Willekes, Chuck Willekes’s son.  Otherwise, various combinations of Ackermans and Alguires at MSU v Purdue football game.  There is image of some nice basketball seats as well.

Figure 2:  Some highlights from the Brighter Everyday book: Far left, one of my all time favs with Connor and me.  I can barely look at it without tearing up.  Middle left, Allison and me.  Middle right, Connor and me, showing him the ropes.  Far right, Alli and me (sense a pattern?).


My right arm does not work that well, so bear with me.  I guess you can read it at the same speed, so you will not be affected too much.  Actually, not at all.  I tell people my right arm is about at 80%, but my good 20% involves typing with minimal errors.  I looked around for a dictation device, but then realized neither of my computers have microphones.  I decided that Staci would be a good option, but that was a failure in mutual timing (3 AM is not her time to write).   So I just started typing.  With my left hand.

I think we left off sometime after surgeries, but before ‘treatment.’   I put treatment in quotes because I am in the Tocagen trial.  If you remember, this is a randomized trial including 1 week of chemotherapy followed by 5 weeks off.  Initially this was 30 pills a day for 7 days.  That’s 30 pills each and every day for 7 days.  If this were not enough, my levels were a little low, and I got fatter (it was the steroids, I swear) so they upped it to 32 pills per day (that’s 252 pills each week).  Just let that sink in (or try to be absorbed).   That’s a full meal and then some.  I’m serious.  And if you are  curious to why I have a headaches and nausea.  There’s your answer.

Since I was still a little confused, had some word finding difficulty, and a little confused (just kidding), I was started on Avastin after a consult with my neuro oncologist in Chicago.   My primary oncologist and sister, Katie agreed and she had it ordered asap.  In her words, “Why wait another day when we can start it tomorrow.”  Good point.  Avastin can decrease inflammation almost immediately.  However, to need Avastin this early during the protocol is a bit worrisome, but I have had a lot of edema from my three resections so who knows. Yes, I am much improved.  Yes, I am on the last line of defense against Gliobastoma Mutiforme.  

I think I am dying.  I mean, big surprise, right?  Not really soon, but within the next year or so.  Maybe much sooner, maybe later.   I have too many neurological symptoms to deny that.  My right arm and leg were drooping before I started Avastin.  My right arm is much shakier.  My legs tremble when I try to sit still.  I called home to my PCP and primary oncologist Katie tearfully to clarify my symptoms, but we both agreed it was not recurrence. Katie told me I should have recurrence in the same area where it initially presented.  Maybe, but I chose to believe her for now.

In less depressing news, I continue to love my people. I have multiple friends and family members.  To make a list would be exhaustive and inevitably incomplete.  So I won’t list them.  If you think you should be on the list, great, you probably are.  If you think maybe you are on the list, then probably not.

I do want to shout out to my kids and wife.  Mia is coming into her own as a kindergartener.  She loves to sing and draw and write her name over and over and over again.  I think she is almost ready to read.  

Queen Elizabeth loves to run.  She loves to swim, but I doubt she will have anywhere near the swimmers build.  But she also loves to read.  If you want a book read (and a followup test taken), she is your girl.  

Connor loves everything sports.  He consumes so much of it, I am slightly concerned.  I mean, if I tell him Florida Gulf Coast University was good a few years ago, he will list their starters.  His mind is like a steel trap for (what I consider) useless trivia and obscure song lyrics.  

Allison is a good kid.  I mean that in a very positive way.  She is just a good kid.  Being funny is probably her strongest attribute. I always hear about how funny she is from everybody who drives her somewhere.  I agree.  She spends 4 nights and 1 morning a week at the pool.  Some nights she is there until 9 pm and on Fridays she is up by 5 am and in the pool at 5:30 am.  That is commitment for a 13 year old.  

Finally, Staci.  She is the apple of my something, the light of my other thing (she continues to make me have word finding difficulty).  I think we are in a good spot.  If she does not edit this out, I’ll know it’s true.  I love you, enough said.

I feel like I am saying good bye.  I am not.  Just see y’all later!

Figure 3:  Upper left, Ella and Mia help support blanket Cindy Heffernan brought over.  Upper right my sisters, Staci and me after my birthday lunch at Roses. Lower left, Queen Elizabeth and her sister, Mia.  Lower middle, the 23 vials of blood I had to give.  Lower right, the Alguire kids on picture day.


Figure 4: Upper left, one of my favorite pictures with Anna Ackerman and Allison, held by Aunt Amy.  Another favorite (okay, I’ll stop calling them favorites) of Connor and me at the soccer game (the joy on his face) and in the water in Florida (probably showing him a crab).  Lower left, Allison with Mia and Ella.  Queen Elizabeth shines as always in the lower right.



Two years ago on my 40th birthday!


The Longest Hangover


Above: Ready for Hamilton in Chicago

I apologize to those who started reading my blog a few days ago.  It was not intended to be posted.  But here is the real deal…

I felt a drip and then another.   Cerebrospinal Spinal Fluid (CSF, or what the brain is suspended in) was dripping from my head to my shirt. This is a shocking experience to say the least. But first to Surgery 1.

We (Staci, my mom and dad) drove down to Ann Arbor the night before surgery.  We stopped at Shalimar for one last good meal.  After midnight I would be NPO, so I figured I could enjoy one last cup of coffee, take one more shower, and then go dark for the rest of the day.

While we were waiting for the anesthesiologist, a sweet nurse walked up and started talking to us.  She introduced herself, but her name didn’t register with me.  She seemed nice and knew me, so we chatted for bit.  At some point in the conversation Staci picked up on the fact that her daughter was a Waves swim coach and the light bulb went on.  It was coach Anna’s mom. Regardless, it is always nice to have a good distraction before surgery.

My neurosurgical team whisked me away in early hours of 07/24/18.  That’s a third time redo for those counting at home.   While the anesthesiologist were putting me to sleep, my latest surgeon walked in.  

“You probably will not remember this…” said Dr. Heth.  

But that is the last thing I do remember.  

I had an MRI intraoperatively and at the end of the surgery. Then, I had another MRI in the middle of the night. Neurosurgeons love their MRIs.

Staci was first to come back to the recovery area and it was then that I was told 9 hours had passed.   That was a long time. Staci said everything was fine, so I believed her.  I guess that’s what you get after a 3rd time redo. The doctor said that the long surgery was mostly due to going in and out of the MRI machine.  

Dr. Heth: “Did any of your previous surgeons mention the difficulty in putting your head back together?”

Me: “Hm, no, but do tell.”

Heth: “Your skin on your head is very thin and it was very hard to stitch together.”

Me: “Hmm, note taken.”

Some leakage around the edges, and a small, waterbed sensation under your skin that is palpable. I even asked my second surgeon, Dr. Matt Tate, and he agreed with the current management. Just wait it out and wrap it at night.  I wrapped my head nightly despite my odd appearance. Despite my best efforts, I couldn’t lean too far forward.  I couldn’t exercise. My recovery was at first pretty uneventful, than you could say almost positive, and then very negative.  

My pathology showed a mix of glial cells, inflammatory debris, and recurrent glioblastoma multiforme.  However, I did get into the treatment arm of the Tocagen Trial.  This is a 50 / 50 randomized controlled trial, so exactly 50% make the treatment arm and 50% are in the placebo (you know once you wake up).  My mother was convinced if she was really nice, someone would find the heart to put me in the treatment arm.  Well mom, you were nice enough to somebody!  

The treatment arm starts in the operating room.  After the resection, your cavity is injected with Toca 5. After 6 weeks post op, you get a repeat scan and plan for chemotherapy. This involves Toca 511 and Toca FC. Yeah, I do not really understand it either, and I am a doctor.  I’ll just stop there part 1.  I was ready to start my oral therapy on Wednesday, September 5th, but my brain had other plans.

Surgery #2

And then Cerebrospinal Spinal Fluid (CSF) started spilling from my brain.  I guess my oral therapy is going to have to wait.  I was typing this blog, and I felt clear liquid fall all over my chest.  Well, that can only be CSF!  It stopped eventually, but persisted long enough to be clearly apparent.  Staci walked in the door from MVP and asked how I was doing?  I guess I was somewhat confused because my response was, “ok.” As she looked up from putting the bagels on the counter (yes, Tuesdays are Panera bagel days after bootcamp). She looked stunned. We settled on calling my PCP, and he called my Neurosurgeon.  After a few phone calls, University of Michigan was contacted (indirectly) and admitted (sort of). We had no idea how many nights we would be in Ann Arbor. They recommended I head to the U of M ER.

The ER was quiet when Staci and I arrived. We were quickly guided back to a room and I was hooked up to an EKG (unnecessary).  I changed into my gown and waited.  Then we waited some more.  Just outside our room was a man who was moaning and groaning and throwing up.  He did that for 8 hours. Yes, that is how long I sat in my bed waiting for my MRI.  They finally took me back for my MRI at 8:30 pm,  it was ordered by 12pm.  My neurosurgeon took one look at me, however, and decided I needed to be admitted on the spot.

They decided that they would do a lumbar drain on Wednesday night to alleviate the pressure on my head. Staci decided to head home to give her mom a quick break. The procedure went well. When Staci returned on Thursday the first thing I said was that I had a new roommate, but that he was a “good” roommate.

This is where it gets funny.  I mean, it was not funny at the time, but funny now.I convinced myself I had a really good roommate. See, at University of Michigan, that’s what you get: A Roommate. This is fine as long as your roommate is good. I have not had one of those, yet. Staci and I awoke to a very loud diarrhea. My roommate did not have control of his bowels.  So for the next 12 hours, we listened to the sweet smell of diarrhea.  We truly needed the air freshener.

That afternoon they wheeled me out of my room for shunt surgery.  My mom, dad, sister Amy and Staci were all in pre-op with me. It was hard to believe I had to go through this again, but I was looking forward to getting back home to my kids. I found out later that it was neuro-oncologist, Priya, from Northwestern. She had read through Facebook that we were at U of M and she was calling to see what was going on.

After surgery, Staci came back to the recovery area again (didn’t I already say that?) .  She got me some water and sat with me until the transport team pushed me back to my room and my lovely roommate.

That night Staci gave me a little pep talk.  She told me things were looking up.  If I felt ok, we would leave the next day.  My response, “I don’t care if  I feel like shit, I am getting the hell out of here.”

On the final day before discharge, I awoke to hear my roommate say something in the middle of the night.   Then he decided to turn on all the lights.  This was 4 AM!  Are you kidding me? Then at 6AM on a Saturday he started making phone calls.  He was determined to get transferred to a rehabilitation center.  Or to get a day pass so that he could go the U of M game.

Surgery #3

A few headaches, a little nausea.  I would try to get up and do something and I just felt like crap.  I spend two straight days in bed and I just didn’t improve.  My dad finally figured out I likely had a leak from my lumbar drain they had placed at U of M prior to my shunt surgery.    “I am 99 percent sure this is what it is CTA.  We are going to fix you.”  That was 24 hours after my previous pep talk of “get your butt up and move.” After about an hour I saw the anesthesiologist and I got my blood patch. I rested for about an hour and then I was home. No more nausea and my headache had subsided.

Just as I was recovering, I got another hit.  I was up early with Staci and decided I would walk on the treadmill while she went to her spin class at The Daily Method.  I walked 2 miles, felt funny, and laid down. This was just a partial (yeah, just a ‘partial’) seizure.  When she arrived, she said Connor sitting on the floor next to me with his Star Wars guys lined up.  He was just entertaining me.  He had tucked a pillow under my head and was keeping me company.

Yesterday, my sisters visited.  They took me for a haircut, a coffee, and we walked by the lake. Today I had breakfast with Todd at Marie Catribs and Wednesday Staci, my mom and I will head to Ann Arbor and hopefully get started on my oral therapy for the Tocagen Trial. So even amidst the most challenging of days, there is hope.  Here’s to hoping that Tocagen will be as good to me as Pembro.


 A few photos from the last nine weeks:


Left: Craig and Staci at Shalimar pre-surgery.  Upper right, before surgery selfie with Staci.  Bottom right: This is what my morning typically looked like…trying to type through the nausea.


Upper left: Tom and Uncle Jim sit and wait while I’m in surgery.  Middle: Mom and dad keeping me company. Right: Allison and Sophie at the State Meet at Eastern.  Lower left: Relay team of Rotem, Sophie, Allison and Anna. Middle left: Reunited after the first surgery.  Middle right and right: The kids at GG and Papas during surgery.


Upper left: Chicago dinner. Middle left: Cindy brings treats, Bradford office sends hands of encouragement, kids first day of school.  Middle: Connor wins the Los Lobos soccer league, Cousin fun at skyline and ice cream with friends.  Upper right: Mia turns 5, Middle, I take snap in between walking and biking.  Middle right: Shakes in Chicago, lower right: John and Connor have fun at Deer Track Junction


Top picture: Staci’s brother, Chad, stops for a visit. Left top: Celebrating September/October birthdays: Anna, Gen, Ella, Grace and Rosalee. Left middle: Ella, Grandpa and Mia race on the EZ roller.  Bottom left: Explanation of the Tocagen Trial. Bottom right: Fun at KD’s pool.  Middle right: Mia’s artwork


Left: In the ER waiting for an MRI, looking at my EKG, home with Ella, the girls making me comfortable.  This was before the blood patch when I only felt decent lying flat.  Below: Happy to be home with my kids!


Happy to be with the kids

Recurrence (I think)

I have recurrent Gliobastoma Multiforme (I think).  My GBM has been sort of a shapeshifter, growing and shrinking, but mostly growing a few millimeters at a time.  This time, it grew more than within the comfort zone of the Northwestern Tumor Board, so I am signed up for my 3rd (gulp) craniectomy (or craniotomy, I can never tell for sure).  I could easily google the difference, but I choose ignorance.  I am not sure how much Craig Alguire will be left after this surgery.  After consulting with my PCP, I am only going on short term disability, but that may morph into long term disability.

I think I am having this at the University of Michigan.  Duke has always been attractive, especially with their poliovirus  therapy.  That helped 20% of the population really well against ‘historical controls.’  That’s not the headline.  The headline is that it is a “breakthrough treatment for GBM.”  I consulted with my first surgeon and the love of my life (JK, but not really), Shawn Hervey-Jumper.  I trust him with my brain.  He had a “slight” lean toward the Tocagen Trial, another form of immunotherapy.  This trial is much further along in research, and now into phase 3 trials.  The poliovirus needs to go through phase 2 and then phase 3 trials to prove effectiveness.  The Tocagen Trial is randomized, so I have a 50% chance of receiving placebo.  If placebo is the case, we have a back-up plan of taking an EGFR inhibitor instead (again, not proven to work in GBM, but what else is?).  The poliovirus trial was published as a phase 1 trial in the June 26, 2018 New England Journal of Medicine.  That is the most prestigious medical journal, but a long stretch for a phase 1 trial.  Oh, and thanks for all the links.  Yes, I did see it ;).  

If you google Tocagen, the title of the first page states, “No One Should Die of Cancer.”  Keep talking, you have my attention.  Totally agree with that statement.  If I actually get in the treatment arm, I will let you know more about the mechanism.  Otherwise, I will take an anti-EGFR inhibitor which targets a protein on the surface of my tumor cells.  If I fall into the placebo arm, I will also let you know more about the mechanism.

That’s my story.  That’s where I am at.   Now, as requested by Meg Weller, here are some pictures of my kids.


Figure:  Upper left, Connor off the blocks.  Upper right, Allison and Staci posing.  Middle right, Allison swimming.  Lower left, Gen and Coach Jim having a moment.  Lower right, Queen Elizabeth and Connor showing their Stars and Stripes gear.  The Queen won the most patriotic participant.



Figure: Left, the partial gang of cousins.  Middle left, the ‘littles.’  Middle right, our 17th anniversary (neither of us really like cake).  Far right, Mia and Tai brought their progeny.


Figure: Upper left, Uncle Jim and Mia steering the boat.  Upper right, the Queen and me.  Middle right, all of the cousins.  Lower photo, my work buddies.

Cherry Capital Cup

Connor had exactly zero wins after three straight years to the Cherry Capital Cup, + or – zero.  He just wanted to win one game.  On his first game, they won in a convincing style with a 4 – 3 victory vs. North Storm.  We accomplished our mission.  Time to go home.  Alas, we had 2 more tournament games to play, and his team kept winning, 7-1 and then 3-2.  We were on the way to the championship game.   This game was pretty anticlimactic since we also won that game 6-1 vs. Fury FC.  That means our total record went from 0-8-1 to 4-8-1.  We do that again next year at the Cherry Capital Cup, we will pull our record to even.

After the championship game, I had another seizure.   

“Dad, I am going to have a seizure,” I said.  

He did not hear me.  He was joking around with some other parents.

“Dad, I am going to have a seizure,” I said louder this time.

He turned and saw the anxiety on my face.  
“Lay down,” he said as he helped me to the ground.  I hear that advice a lot after I tell someone I am going to have a seizure.  That said, if I tell you I am going to have a seizure, tell me to lay down.  In Starbucks on 12/21/17, I actually stood up and then hit my head on the way down.  Those simple instructions are very effective. 

I was awake the whole time, just did not have any control of my right side as it contracted and relaxed again and again.  That’s a partial seizure.  A generalized seizure is when you wake up in an ambulance outside of Starbucks.

I was on the ground, and I felt something wet hit my face.  I hope that was a tear from my mother.  Anything else dropping from her face (specifically, her nose) would have been pretty gross.  I was also surrounded by several doctors including Heather Slay, Brett Brinker, Tom Auer, and my PCP.  We even had a nurse practitioner Tara Webb.  None of them had every seen me seize.  Actually, only Dr. Amy Bishop saw me immediately after my last seizure.  After I started to get control of my right side, I remained on the ground.  ER doctors: do not read the following couple of sentences.  You have a very difficult job.  Just start at the next paragraph.  An ER doctor came by helpfully and suggested I put my legs up in the air.  I did, but then I realized he thought I was having a vasovagal spell, not a seizure.  That’s what ER docs are good for:  What is the most common diagnosis and the diagnosis I cannot miss?  Rule in one and out the other, and then send them home.  If I went to the ER, I would have probably gotten a PE protocol CT, troponin level, and a cardiology consult if the troponin was ambiguous (or, at least that’s what it feels like on call).  

Welcome back ER staff. 

We kept my mom busy by sending her to the car to get my backpack with my Ativan.  After she returned and then walked the backpack back to the car, we sent her back again for a second dose.  It was a good distractor for her while I recovered. 

I finally got up off the ground and took some pictures with my son like nothing happened.  The rest of the parents must have been like “wtf?”  Excuse my foul language, but I can’t imagine anything else going through their minds.    A few of them that Connor has played with for a few years knew my diagnosis.  Newer parents had no clue until that moment.  Well, there was my announcement to the soccer world!  As I walked of the field, I waved to a group of them.  See y’all later!

Figure:  Left, Connor, my PCP, and me right after my seizure.  Nothing to see here!  Upper right, Connor showing his moves.  Middle right, some of his teammates after the game.  Bottom right, giving Connor extra motivation (okay, that picture was meant to be a joke).


I had a funny look at work, and Nurse Cindy could sense something was wrong.  Some people just pull that out of you.  Nurse Jane did the same after I showed her an e-mail from Dr .Brahmajee Nallamothu.  His father-in-law also died of brain cancer after a good, asymptomatic run after resection.  And I thought I was special.  I needed to gather myself.  Nurse Jane helped by seeing my first patient for several minutes while I gathered myself.


What else is going on?  Allison played lacrosse and went a perfect 24-0 over the season.  That’s 24 wins, zero losses if  you are not sure what 24-0 means.  She likes it, but I don’t think that will be her high school sport.  They only play 6 girls on the field over 4 grades.  

Queen Elizabeth ran a 400 meter dash at the LBW race (Lakeside – Breton – Wealthy).  From now on, she will also be called the Silver Bullet.  Margaret McIntosh coined her that through her mother on a text: “Ella is the Silver Bullet, and I never want to run that again.”  Connor has to try a little harder to make the podium (top 3 make the podium), but he did for the second year in a row.  Phew.  He is all willpower, but not as much intrinsic talent as his sister.  The Silver Bullet just has another gear.   Connor tells her to “Go” and she just takes off.  At that point, she went from 3rd to 1st pretty easily.


Figure:  Left, Ella has always liked to run from behind.  Seen here, she is letting Connor and Gen take the lead.  Upper right, picking it up for the last quarter of the race.  Bottom right, the top 3 finishers from 4th grade.


I try to make it to more of my kids’ events nowadays.  4th grade science fair?  Check.  Aforementioned LBW race?  Check.  Second grade restaurant?  Check again.  Last day of school or anything for Allison?  Okay, she would have killed me.  She left early and came home at about 8:30 PM.  I had Staci text me the photo she took prior to driving her to school.  Check? 

When I went to the second grade restaurant at Breton Downs, I surprised Ella.  I was supposed to be working that day, but I snuck out for about an hour.  It was kind of like those videos when military personnel come home without telling their kids, but not quite as dramatic and no music.  

Figure: Left, 4th grade science fair.  Upper right, at the second grade restaurant.  Lower right, trying to make the most out of Craig’s Cruisers.


The kids all successfully completed a school year.  Mia graduated from preschool, Ella finished 2nd, Connor 4th, and Allison 7th.  Next year will be big with graduations from elementary school and middle school.  I told Allison we would both go to our favorite kids’ graduation, but she will just have to wait and see where we end up.  Connor and Allison are both strong candidates, but the best bet is the Silver Bullet.  I’m sorry, but she is just so fast!

Figure:  Left, Allison on her way to school on her last day.  Middle left, Mia finishing preschool.  Middle right, Connor and his teacher, Mrs. Ries.  Far right, Ella and her long term substitute teacher, Mr. Wondergem (sadly, one of our favorite teachers, Mrs. Vikki Boersma, is going through a family tragedy).


I have another MRI in the next few weeks.  This one will be a little more nerve-racking since I have had some symptoms (seizures).  Well, not necessarily more nerve-racking because they all are nerve-racking.  (How many times can I write nerve-wracking in this last paragraph? I’ll tell you, it’s 4).  The most difficult part is not knowing.  Some patients refer to that as scanxiety.  Once we know, we can at least form a plan.  As Lucia Steinlage said before my last surgery, ‘This is just one more mountain to climb, so grab a pickaxe.’  Or maybe not.  I’m not sure.

Mother’s Day 2018

I had an eventful 5 weeks since my last ambiguous MRI.  First, I got a second opinion at Henry Ford, mainly because they have a research trial I am interested in.  The consensus there was that I had recurrence of GBM.  Also, I had another generalized seizure.   With Henry Ford’s opinion and that seizure, I moved up my follow-up MRI at Northwestern from 6 weeks to 4 weeks.  This MRI, however, showed no change compared to 4/11/18.  This is not consistent with recurrence since once this cancer recurs, it recurs with a vengeance.  

The day I had that seizure, I worked out for about 2 hours in the morning.  I ran 9 miles on the treadmill, lifted weights, then biked to MVP for a 1000 meter swim.  That was an extreme day by my standards.  That was peak training for the Riverbank run.  

At MVP, I told lifeguard Karyl that I had seizures, but none since 12/21/17.  The sign by the pool said, “Swim at your own risk.”  That scared me a bit.  Lifeguard Karyl also worked as an ER nurse.  The stars were aligned for me that morning.

“Are you on Keppra?” the lifeguard / ER nurse asked. 

“Not anymore,” I said, impressed with her seizure med knowledge.  “I transitioned to Lamictal.”

“You should get a medical ID badge.  That way, if you have a seizure, everyone can read your identification and contact number.”  

“Good idea,” I said, thinking that was a good idea.  Later that very day, I had that seizure at my house around 9 o’clock.  Well, damn, I am not going to be driving again until 10/24/18 (or maybe never).   So much for my the summer solstice celebration.   

I don’t really know what my aura is, I am simply aware that I am going to have a seizure in about 10 seconds or so.  

“Staci, I am going to have a seizure,” I said.

“Lay down on the ground,” she said.  Good idea, I thought for the second time that day.  

She took my glasses off and I started to seize.  The seizure began with my right arm contracting violently without my permission, then my right leg, then on and off for a while.  My head starting hitting the carpet, and I lost consciousness.  I woke in my postictal haze to see ER doctor Amy Bishop in our house. 

I am not sure what triggered the seizure, be it too much exercise or taking my lamictal a little erratically (that day 5 AM and 9 PM).  I never missed a dose, but took it whenever I remembered.  Now, I am now setting my alarm for 5:55 AM and 5:55 PM to take almost exactly 12 hours apart (within 5 minutes or so). 

My kids witnessed this seizure.  Staci didn’t tell them to go out of the room, but they all congregated in Allison’s room.  Connor was first to come back and sit by me afterward.  

“Does it hurt?” he asked. “I was scared and worried.”

“Hum, not really,” I lied.  If you have a partial seizure and you have extreme right sided contractions while bouncing your head against off the carpet, it certainly does not feel good.

He offered to read to me, and then started quizzing me about NBA facts.  

“Who is the best player of all time?” he asked.  

“Lebron James,” I said, knowing he is not a big fan.

“Who are some of the best players in the NBA?”

“Magic Johnson, Larry Bird, Isiah Thomas…”

“What teams are in the playoffs?”

“Detroit Pistons.”

He smiled and knew I was just teasing him by answering great teams from the 1980s.  He sat with me for a while until his sisters came out of Allison’s room.

I am taking pembrolizumab locally nowadays at the Lemmon Holton buidling.  This is a quick 30 minute infusion that takes more time to prepare than actually infuse.  Why stop what is possibly working for me and has no side effects?  The studies on this drug are mostly null (no benefit), but there is subset that may benefit.  I do not really want to know if I am part of that subset.  I believe it works, so it does.  

Figure: Upper left, my support group during my infusion: the always cold Jeff Decker.  Upper right, my personal ER doctor and race companion, Todd Chassee.  Bottom, Todd and I after the race.

Riverbank Update

I ran the Riverbank race 5/12/18.  The whole 25K.  Much slower than my peak times, but near my lifetime average at 1:55 and some change.  I was trying to keep a low profile since I was not sure if I could do it but received multiple texts before, during and after.  Several of the nurses at the hospital were wearing Team Craig shirts.  Well, got to do it now!  From first step to my last, I ran with my portable ER doctor Todd Chassee.  Every year that I have run this, no matter the pace, the last several miles just hurt my legs.  Staci was driving Allison to a lacrosse games in Okemos.  It rained and was cold there.  I’ll take the 25K run, thank you very much.

Alguire Update

Within the next week of my seizure, Connor asked if he could go to his friend’s house Zach.  “Oh, can I go?” I said jokingly.

“I wish,” said Connor without a trace of irony.  That may have been the nicest thing I heard from one of my kids in 2018.  These moments always make me want to be nicer to my parents (at least a little bit).

I even started crying while at Connor’s swim practice as my dad was showing me pictures of a vacation last spring. It was a fishing trip for the boys.  No, I don’t really like fishing, but I do like my only dad and my only son.  We were scrolling through pictures of the beach at night, dolphins riding the waves of the boat, and hanging out with Joe Aufrey (whom my son still thinks of as the most knowledgeable on cars…maybe true).  Joe can be full of stuff, but he knows a lot about cars.  In hindsight, that was a fun trip.

Figure: A soccer game in Grand Haven always brings out Connor’s relatives. Upper left, Connor and Mia before a game at the MSA Fieldhouse.

While I am clearly Connor’s favorite, Staci is clearly Mia’s.  Every once in a while, Mia asks for me, maybe one out of 10 times.  Usually it is to wipe her rear end after defecating, but I treasure those moments of bonding.  And she always asks to ride on my shoulders.  She just stands in front of me and says, “shoulders.”  It is my cue to lift her up.  She is also playing soccer on Thursday evenings and Saturday at 12 PM.  Finally I have a girl interested in soccer.  Truth be told, I am not sure if we have the bandwidth to handle more than that.  In addition to biking Connor to swim practice, it is also my parenting job to go to her soccer practice.  We usually get picked up by one of her friend’s parents.  I can’t say it isn’t fun watching her play, but I also get to hang out with the other soccer dads.  Now that I know them a  little better, it is a lot of fun.

Figure:  Mia right where she likes to be.  On the right, Mia buttering her own toast just like Grandma.

I realized I do not mention Queen Elizabeth that much anymore, or have her in individual photos.  That is life as the middle child.  Well, here you go.  I do love jumping on the trampoline with her because she just flies up in the air when I bounce her.  Seriously.  She has the biggest delta from her individual bounces to when I bounce her.  She has learned to time this perfectly, watching me go up and down, and landing a split second after I do.  Up she goes.

I think Allison is okay.  At least that is what I am hearing from her friend’s parents :).  Maybe that is a self selecting group.  Who would tell you that your kid is annoying and a pain to be around?  They all love her company.  She is actually quite funny, some crude, others more reportable on this blog.  Without any examples, you can just trust me on this.


Figure: I decided to take a picture of Ella without anybody else.

To my mother, MK, who always seems to get what she wants without even trying.  Pulling the levers behind the curtain without any of us really noticing.  Happy Mother’s Day, Mom.

Staci and I are good.  Every once in a while, we go on date nights (about once a month).  Our favorite place to go is the Grove, and since we have limited nights out, we almost always find ourselves there.  I am not going to say she is the best mom ever, but she is in the Top 10.  She keeps our house afloat.  I love you, Staci.  Happy Mother’s Day.



Figure:  At the Grove.  Some guy literally in between us, but never figuratively.

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.