Cancer as a big ass bug

It is the eve of the anniversary of Mike Grzymkowski’s death. Death is a HUGE bug in life.

I think that sometimes I need to remember the pain associated with these losses to know they were real, to know that the highs that came with their lows were also real.

To feel real.

To remember how amazing all of those who love your loved ones are, to give context.

There is no reason for it- this ultimate bug. I do believe in God but often not in man. But that human goodness is God, is hope, is life, is love.

Mike, Gromo, Gryzm—was just a good guy. Trouble, funny, but also kind.

My earliest memories of him were from attending "dancing school" (elementary school starting in grade 4)-- a place I was forced to attend. A place with more kids who went to private schools than public.

A place where a public school girl who would be 6 feet tall by 9th grade did not really fit in. Not the one chosen for choice dances by the boys and then often picked (likely out of pity) by the teacher who was at least a foot smaller and much older. That was well intentioned I am sure but simply humiliating. I don't know that I ever even told Mike as we became closer in later years. But he was nice and I often picked him to dance with when forced into “girls choice”- not because of a crush or a close friendship. But he was nice and safe. And that was more than I could recall of most of the guys. He was just kind.

We went to the same church, and in some summers the same church camp. And he became dear friends with one of my favorites from my class. The two bridged schools and spaces together. Mike was simply a good guy.

So years and years later, I was newly married to Johannes-- and we were invited to the wedding of my friend Tonya. Mike was at her wedding too, old family and neighborhood friends. Tonya made the comment to me, "I put Mike G at your table-- he and Johannes both like weird music" ; she thought that they might get along.

And that is how it began.

I began grad school, had rotations, started a job and often had weekend work days. (If infectious diseases could take the weekends off?)

And Joh and Mike became best friends. Playing music, listening to music, beers, backgammon, philosophy, bike trips.

When Mike asked Ronnie to marry him-- in that foursome of artsy, poetry music types-- I was the one who didn't quite fit it.

Except that I just loved them; and we laughed nonstop. And I played my life's best scrabble board against them. I was sober and pregnant to be fair. But it was a brilliant board. A George Costanza moment-- "I am out." I haven’t played like that since. I mean why would I try?

Mike was Oskar's Godfather and Johannes Mike and Ronnie's best man.

Finally they had Nico. We were just starting to find a little bit of a rhythm when Mike would come over with him when Ronnie worked that fall of 2010. He was so in love with being a dad. I strongly remember that last time we were at the park known to Mike as Squaw Valley park with all four of the boys. He had woken one morning with facial droop, diagnosed with a Bell's Palsy (before we had Lyme here) and was on steroids.

A few days later he woke and his balance was off. Something was wrong.

From his neurologist to the ED for imaging. An admission in early December of 2009.

I took Topher to see him when they were evaluating him for a single brain stem lesion-- treating as possibly an atypical presentation of multiple sclerosis, infusing IVIG, steroids. Topher sat on his bed (age 4) and we ate clementines. Talked about the workup and how he was feeling. Diagnosis unknown but also no worries.

Two days later Johannes went to watch the Steeler game with him, he was losing fine movement and his speech had became more difficult with shallower breaths, they moved him to the ICU to watch him. Guillain Barre? Worrying about diaphragm paralysis. Plasmapharesis began in room 444.

But nothing was working and a diagnosis was elusive. His speech was difficult and communication became his pointing to letters and words. And when he lost the ability to point with his fingers, his arm and then nods.

It was like watching someone develop full blown ALS in 3 weeks. One night Johannes and I arrived late from a funeral and I sat up in the room to listen to music with Mike while Joh talked in the conference room that we had taken over with family. One minute he and I were communicating about the beautiful memorial-- talking wasn't quite what we were doing.... And then his eyes rolled back and he was gone.

I was screaming and thumping his chest to keep him present, looking to his monitors at his vitals and yelling for help. He was intubated as I was escorted out of the room. I was his friend in that spot, not his clinician.

I honestly thought he was gone-- brainstem herniation? What was driving this??Mike was wheeled off for more MRIs and CT scans.

Johannes left to go get Ronnie, I called Mike's parents. And then we sat. Waiting.

Around midnight--- we could hear two men yelling at Mike-- neuro had come in to see him at 11:30 pm and in their attempts to asses his consciousness, he opened up his eyes. You could hear them cheering at him. We had him back.

A seizure they thought, mentally intact. All there.

Betsy dropped me off and Joh stayed with Ronnie and Ron.

And that is how it would go until the diagnosis. Good days, bad days. Seizures and a trach for airway protection.

Praying for it to be an infection, then praying for it to be lymphoma. Who prays for lymphoma?

Shift work and schedules for overnight coverage in the ICU, friends coming in from all over the country for a week of night shifts-- someone was always with Mike. We figured out (with the help of a specialized speech therapist who we were able to get special privileges to visit at the bedside) a communication system.

And then that devastating diagnosis. A glioblastoma. Unresectable. Neurosurgery to open biopsy pieces and immediately close, a neurosurgeon who went immediately home, not a word in recovery.

Attempts to treat-- plans for a return to home with a vent, palliative treatments outlined and in them-- no need to reimage for weeks.

But then more seizures and in those emergencies repeat imaging that showed tumor growth and new lesions. Growth In days.

The cycle of his unresponsiveness for days after a seizure only to have the best day twenty-four hours before the next seizure and MRI.

No response to chemo, no way to go home with a vent. His choice for hospice with transfer on the vent, his plans for when the vent would be removed.

And there we were in 2010, January 29. In his room as he was having one of those good days-- so unexpected. He and I were hanging alone, he and Johannes had had some really tough conversations earlier-- his lucidity was a gift. And he was trying to ask me what I totally know now was-- "what will happen if they turn the vent off". But of course I could not figure out what he was asking. He was exaggeratedly pointing and moving around--- spastic. I couldn't make sense of his charades. But when Joh and I spoke as we drove home that night-- there is simply no doubt in my mind.

The honest answer would have been -- in his lucid moments, based on his oxygen needs-- he would have been ok for a bit. But I never got to that-- I came up with "do you want Joh to come in and play guitar." It was the last time Mike gave me that look-- a raised eyebrow of humor both loving but also and simultaneously judging me an idiot. . In Johannes came with his guitar--he played and Mike sang and danced.

It was the one night I couldn't say goodbye. There is no regret, or worry. Mike knew I loved him. But I didn't say goodbye that night, I was just sobbing for all of the loss that I knew was coming. I didn't want to burden him with my love and pain.

So much love in that room at midnight. Bourbon and Phish. Laughter and love. Smartassedness. All Mike. And then he was gone in the early morning of January 30.

As a clinician, I have never seen anything grow like his brain cancer. It grew like it was an abscess.

With the loss of Mike Grzymkowski we saw the amazing side of humanity. The life, the good, the God. The Love.

His family became ours-- his widow and her new husband's family.

His son has his feet and smile, and an amazing little brother.

Mike was love and continues to be love.

Tomorrow night-- as we have done every year since he died--- thanks to that highschool friend that he bridged schools with-- we burn our Christmas tree, drink bourbon and laugh. Dark jokes that he would appreciate.

And we celebrate the love he gave to us.