Again

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.

Rebounding

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?).

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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.

 

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Two years ago on my 40th birthday!

 

The Longest Hangover

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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.

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 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!

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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.

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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).

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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.

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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.

 

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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.

As Promised, the Viso Blog

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

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

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

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

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

*Not significant.

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

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

Viso

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

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

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

A Brief Note About my Blog

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

River Bank 2018

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

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

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

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

Family Update

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

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

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

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

 

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

MSU Basketball

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

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

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

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

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

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

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

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

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

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

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

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

 

 

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