“When you are going through hell, keep going.”- Winston Churchill

Winston Churchill once said, “When you are going through hell, keep going.”

That quote has run through my mind a million times……

There is an element of vigor and toughness in that quote.  It speaks of relentless endurance.   It is motivating.  It needs to be embraced.   I cannot and I will not be beat…Ever!  Be gritty.

People say that “bad” things come in threes.  I’m not sure who coined that phrase or what cosmic rule that belongs to.  Seems legit though.   I’m not alone here.  Everyone faces adversity.  It’s what forms the character and polishes the soul.  The past 18 months of my life are described below.   It’s about being emotionally turned upside down, it’s about questioning the meaning of your own life, it’s about trying to make sense of death.  It’s about being brave.  It’s about maintaining a positive mental attitude in the face of adversity.

Numero Uno

I had many experiences growing up that fostered my independence and challenged my will.  However, I hit a very challenging year when I was 39.  I was/am the hardworking father of 3 small children- Lilia(5), Ryder(3), and Scarlett (1); that’s 3 beating hearts under the age of 5.  Somehow or another, we were making ends meet and everyone was surviving.  That’s what it was.  Survival.  It was not living.  I had been traveling all over the world as part of a new role that I was promoted to and I loved the company/industry that I was in.  I got to travel to semi-exotic places and meet with sophisticated physicians from all over the world.  My sisters would kill me to have my job.  While I was gone, my now ex-wife had been holding down the fort.  Although we had child care, it was still a challenging position to be in.  Especially for someone like her who is motivated and trying to build a career herself.

kids

 

I just came home from an international work trip from Brussels and my time zones were all mixed up.  I was exhausted.   The kids were all tucked away in bed and I laid down next to the person that I had known me for the last 10 years of my life.  She had seen me at my best and seen me at my worst.  She was striving for that perfect balance as loving mom and career oriented professional.  She had a very successful consulting business running that she was enjoying but we were out of balance.  She wanted more out of life than what she was getting.   By this time, our relationship was deteriorating.  It got cold and distant.  We didn’t make time for each other.  When we were in the same room we were on separate computers, we didn’t communicate anymore, we fought about ridiculous things.  It was as if two people were cohabitating together while doing our best to raise 3 kids that needed our attention more than anything.(Side note: to all you parents out there considering having 3 kids under 5, God Bless you)  That night after my return from Brussels, I knew something was very different.  She was more upset than i have ever seen her.   No one was able to rest.  We were unsure of what course of action to take or what we should do.   She felt like she had pulled the family wagon long enough by herself and she was done with that.  We worked on repairing it but it was gone. So we separated.   For people who go through a period of separation, there is all kinds of emotional and physical responses.  You essentially go through Elizabeth Kubler Ross’ 5 steps of dealing with death.  It starts with Denial then Anger then Bargaining then Depression and finally Acceptance.    It’s a strong emotional pull that you have to get over.  Eating becomes a 4th or 5th priority as well.  I went from 195 lbs to 172 lbs.  I could see veins in my obliques.   I started taking Ambien on a regular basis.  Even then I got 3 hours of sleep and I was up at 3am.  Your facial features withdraw.  Facial bones emerge in places that you didn’t even know existed.  And sometimes, worst of all, the bottle becomes your friend……….

We split an apartment in Kingston,MA that was right on a major highway.  I nicknamed it “Daytona” because the cars would go by so loud and keep you up all night.  I had to wear ear plugs to sleep there.  There wasn’t more than a mattress on the floor and a 12 pack of Brooklyn Summer in the refrigerator.. Usually there would be one giant lazy fly bouncing against the old glass window. I was still going to Crossfit everyday.  It kept me sane.  I was doing Boot Camps, Hero WODS, and any other long arduous workout.  That kind of conditioning makes you realize things about yourself that you’ll never know otherwise.

At “Daytona”, there was a stack of books that were self-help in nature and some were meditation related.   For the record, I can inhale a breath for 74 seconds and exhale for about 62.  That took me almost a month to achieve.  It worked wonders on decompressing my stress level.  I also read my favorite book “Flow” which made me want to start this blog.  There were several others favorites too.  I never got to know the neighbors there. I hated that apartment. Why bother?  I eventually found a winter rental out at the beach and decided it would be best for me to move out.  That place gave me hope and restored my Positive Mental Attitude.  We started splitting time with the kids which meant that for the first time really, I would have them alone for overnight.  I am the first to admit that it was an adjustment for me.  I could write an entire blog on that alone.  I’ve only looked forward from that day on though and it’s the best thing that ever happened to me.  It gave me the opportunity to become a better father to my kids.  She and I have worked hard to maintain a strong cohesive parenting plan.  We prioritize the children and keep their best interests at heart.

While this was all going on, my old boss and good friend-Rich Cohen had decided to move back to California for a better quality of life for his own family.  That left his job open which I was well positioned for.  But that meant that I had to pull my shit together and get out of this funk that I had been riding in for a while.  At first, I was unsure of myself and whether or not I could manage all of this chaos. I wasn’t sure if I had the time/capacity, with 3 little kids,  and proceeding through a divorce.   I have to thank my man Art Butcher who is one of the best dudes I’ve ever met.  When you meet someone who believes in you, don’t ever let that relationship go.  There will be far more people in the world that are doubters. I needed that boost of confidence at that point in time to make it happen.  He helped me separate my personal life from my professional life. I can remember that conversation like it was yesterday.  In regards to my divorce, he said, “time heals, you just have to endure it.”  So, in the midst of the divorce quagmire, I “pulled my shit together,” I put every ounce of energy into preparing for the interview, I interviewed for the job, and was awarded the position.  In the midst of a personal funk, I had a shot of positivity that put the wind back in my sails.  Thanks to Tinkham ,Heine, Callaghan, McGoldrick and especially Jesse.  You guys supported me unconditionally.   I consider myself lucky to have friends like them and I’m in a much better place now than when I began this process.

Numero dos.

In March of 2013, I was sitting in a day long meeting, checking my email from time to time.   I saw a note from one of my closest friends, Matt Kern.  He lived in Stockholm and I lived in Boston.  We were making plans to go to this really awesome music festival that was in a field somewhere in Ontario.  It was the type of event that we had gone to before.  Lot’s of partying.  Lot’s of good music with this feeling of adventure to it.  If we made it back across the Canadian border, that was a plus.

Matt and I grew up in Woodbourne, NY.  Google it.  Not even sure that you’ll find it on there.  We were born 3 days apart.  His parents were divorced.  My parents were divorced.  They actually dated at one point in time.  We were good buddies from the time that we were little but our friendship really took off at the age of 15.  Matt was one of those kids that faced adversity on a daily basis.  He had recently just come to live with his Aunt and Uncle.  It was safe to say that he had social adjustments to make in his life(he’s probably smiling down on me right now for writing that).  Anyway, he had nicknames like Manson and Psycho…  He wore a long black trench coat like John Cusack in Better off Dead.  He liked to lift weights and listen to the Misfits.  He was a character…. Our friendship took off from there.  He was the voice of reason, I was the voice of unreason and then we’d trade, repeat, and then trade again. I can’t remember not being with him. My mom still refers to Matt and Jesse as her other sons.   We’d spend hours trying to figure out how to get a house speaker wired into the trunk of his car.  We’d go “fishing” so we could drink Heineken.  We worked with 20 Jamaican guys on a construction crew who we looked up to.  They ate beef patties, we ate beef patties.  They ate ox tail, we ate ox tail.  We shared an apartment above a bar.  We hiked together, we mountain biked together, we reached deep altered states of consciousness together. Our friendship was bonded in steel.  The kind where if we hadn’t talked in a year, we could pick the conversation right back up.

So, I thought his email was in regards to concert logistics.  Where will we stay,, where was he going to fly into ?  Instead, it said none of that.  I felt like I just got punched in the mouth.  Here is what he wrote me, verbatim:

“Hey

Bad news, my trip to the states is off.

From the beginning
around Christmas time I started having trouble swallowing….and now after 3 weeks of intense testing pet scan, gastroscopy (I’m sure this is all familiar to you) the doctor told me yesterday that I have distal adenoma carcinoma (I think that’s the translation). You probably know what that is too with your endoscopy experience. My pet-scan/CT scan also shows a possible tumor in my liver…wtf?
I’m scheduled for a liver biopsy on Tuesday and then treatment when the results get back.

And no, I’m not smoking, quit right after I saw you last, best thing I ever did-several times.

Do you know how rare this is? Especially in my age group? about one in a million. Right now there are only 3 cases of people under 60 with this in Sweden. I don’t get it. Skin cancer lung cancer tongue cancer yeah that I would understand a little better, but not this. Not good. So as of right now everything changes.

The plan is to get my liver biopsy results back first and then if that is cancerous, I go into chemo directly. Then they cut it out. Then I go back into chemo for my throat and radiation, wait a couple of weeks, see the results of that and then they remove my esophagus and a portion of my stomach. I’m a bit nervous, it’s a major surgery and the 5 year survival rate is only 20%. But I hope I get lucky enough to even be considered for the surgery. Kind of puts things into perspective.
Sorry to hit you with this, but this is my reality right now. I haven’t told my family yet, I want to wait until the liver biopsy comes back. I guess I’m telling you because I wonder if you have any insider information about this kind of thing or any advice of what I should look out for or anything at all.

What a punishment for a cook. And here I thought jogging, eating organic food and all that would guarantee my passage into my seventies and beyond wake up! Still a believer in diet and exercise but realize that anything can happen to anyone at anytime so don’t take life too seriously.

Anyway, that’s all i have.”

Matt had lost 22 kg in 3 mos.  He had cancer but he never let go of his positive attitude.  EVER!    It hit me really hard.  Maybe it’s because that is the line of work I’m in.  Maybe it was because he was a chef and he lived to eat everyday.  Maybe it was because he started from nothing and made something of himself.  I was angry.  More angry than I had been over anything in a long time.  I was determined to use my industry connections to get him the best health care possible.  I committed to seeing him 4 times in that year alone.  The whole thing was just wrong.  We were very close friends and close friends drink shitty beer while telling fishing lies going into their 80s.  He hadn’t even met Ryder or Scarlett yet.  When I saw him in May of 2013, he was significantly smaller than I remembered.  He had already started chemo and radiation to shrink his esophageal tumor.  He was having a hard time swallowing food which for a chef is awful.     But he was tough.  I never met anyone tougher than him.   He was a survivor.  He had all the street cred because he earned it all..  On top of that, he had more common sense than anyone I know.  In August, he went for surgery which was successful although 9 out of 30 nodes that they removed were cancerous which means that there is a high likelihood of recurrence.  But he was in excellent spirits.  6 weeks post operation, he walked into a Crossfit Gym in Stockholm and declared his goals to the head coach.  For 2 months while he worked out there, he became the gym inspiration.  He and I would talk everyday.  6 am EST was 12pm his time and he was usually fixing himself lunch or doing something in the yard.

My last trip that I would see Matt alive was in February 2014.  I was there for a couple of days and he was planning his African safari with his family to Kenya and Zanzibar.  We had so many laughs.  We watched repeat after repeat of Eddie Murphy, Chris Rock, Cat Williams.  And laughed and laughed and laughed..  I suspect that he treated my visit like it was going to be our last and that was how we wanted it to be remembered.  There is something to be said of the emotion that comedy can bring upon a sad situation.   Our last night in Stockholm, Matt and I went to his favorite pool hall where we shot pool and listened to Bruce Springsteen all night.  We talked a lot of shit that night. The next morning, he walked me into the airport.  Normally, he’d drop me at the curb but he walked in this time and I knew then and there that I may never see him again.  I gave him a great big bro-hug.   I welled up like a wuss.

2 weeks later, Matt was on his African safari with his family when he became incapacitated with 2 brain tumors  I remember thinking about what that feeling must have been like for his wife Anna.. how terrible…being in a foreign person in an African country with a very sick husband.  It was the most helpless feeling I’ve had.  I think we all wanted to help her but we were of little value…  Matt was med-vacced back from Africa when I was in Utah skiing with “Uncle” Lou.  I will never forget my last conversation with Matt.   It was 5 am in Utah and I went and bought a venti dark roast from Starbucks..  I called Matt and he was awake but was only capable of whispering.  His energy was gone.  He sounded depleted.  So I started by reminding him of all the things that I was thankful for that he had introduced me to in life..  I told him that I would always foster a relationship between my family and his family.  That his children would always have a connection to my children.  While I was sad, I was also very proud of Matt for what he had made of his life.  He was a doer.  The odds were stacked against him and I learned that nothing can change someone’s grit.  It’s there and part of that person.  Matt was wicked smart and gritty.  And then I said the hardest thing I’ve ever said in my life to anyone, “I love you, Good Bye.”

1012140_10202292998100587_7363872292769533975_n

During April of 2014, Jesse and I flew to Stockholm to attend Matt’s funeral service which would be held in Pelarnehult.  The town in which Anna grew up in the south of Sweden and where they were married.  He and I were glad to see each other on the first night there because emotions had been running high.  I must say, that Matt’s service was the most eloquent and tasteful one that I have ever been too.  For all reading this, I too want The Pixies played acoustically at my service..  It was classy…At the end of a few days, I don’t think Jesse and I had many tears left to spare.  They were gone. We left them all in the church.   If I could describe Matt’s daughters to you in one word it would be “pure”.  They capture his spirit and personality very well.  They are curious and very smart.  Elsa is the big sister that’s always trying to keep order.  Betty is mischievous and has a really funny sense of humor.  They definitely know their way around a kitchen.  They are his legacy.  I’ve watched Anna grow from the photog that she was 20 years ago to a leading magazine photographer now.  She is an incredible person.  Spirited, kind, and awesome.  She’s the most talented artist I know, hands down. Her work blows me away. Check her out at annakern.com

Leading up to this trip(Since January 2014), I had some really funky symptoms going on with my body. Like, numbness on my right thigh. Radiating pain that would shoot out of my liver area. Numbness running down to my toes. Like low voltage electricity running down my right side. Just stuff. Really odd unexplainable stuff. At one point, I felt a lightning bolt shoot down my leg. Anyway, we didn’t let it get in the way of our Stockholm trip and I committed to Jesse that when i got back to the states, that I would have it looked at.

Numero tres.

So, when I returned back from Stockholm, I decided to make an appointment with my man Dr. Steven Kaplan.  I’ve known Dr. Kaplan since he got out of his fellowship a few years back and he treated me for Lyme Meningitis.  He’s the man.  He’s definitely motivated by challenging cases and I have never brought him anything less than that.  It was the Thursday before Easter and we sat in an examination room.  I explained to him about all of my numbness that I was having and how it was probably all related to doing “strongman” workouts with atlas stones and weighted yoke walks.  He listened and then said, “Ryan, you have to herniate like 10 different discs in order to have all of those symptoms.   I’ll never forget his next words, –  I’m ordering you a head MRI.  You need to go have this done ASAP.  Even if it’s on Easter.”  So, that’s how it went down, an MRI on Easter revealed a 3cm tumor on my brainstem/cervico-medullary junction which had been causing all of the issues.  Unrelated side note:he also ordered an abdominal CT which revealed a horseshoe kidney(super kidney).  Means my kidneys never separated in utero(WTF?).  2 days later, Dr. Kaplan told me that I needed to come see him.  It wasn’t like hey come on in and let’s chat, it was like be here this afternoon… so I knew that something was up.  The radiologists had read the report as one of 3 strong possibiliities- hemangioblastoma(which it was), ependemyoma(slow-growing cancer), or and astroycytoma(fast growing cancer).  I walked out of his office that day in disbelief.  I kept thinking, I can dead lift 400 lbs, they have the wrong patient here.  This isn’t me. Denial. Denial. Denial.   And then I received a copy of the MRI.  I went to a burger joint with my buddies Jon and Rob that afternoon and we put the MRI CD in Jon’s computer.   We studied it and studied it.  I got sick looking at the image. The tumor was located on the dorsal aspect of my brain stem.  There was just no more room for it to grow without impacting more neurological function.  I could see where it was pushing on the stem and all of those sensory nerves that go down my right leg.   It would have to come out.  The next person I called was my great friend Bora Gumustop.  Bora is a world renowned gastroenterologist with extensive medical background.  He’s also among the smartest people that I know.  He happens to have a wealth of knowledge related to brain tumors too.  Thank god for his wisdom because he helped me get my shit together.  I got organized in finding the right surgeon and asking the right questions.  By this point, it had already spread around my work office that I had a brain tumor too.  People are unsure of what to say to you.  It’s one of those “it’s best left not discussed” topics, I think.  Sometimes they look into your eyes to see if they can see it. Quite odd.

So Bora and I embarked on a journey to find the best surgeon that I could to have this thing removed.  All of my industry connections(including Mike McGoldrick, Ian Lawson, Matt LeMay) told me that I couldn’t go wrong with Dr. Will Curry who was this younger neurosurgeon that was well-known for taking on advanced complex cases at Mass General.  I also had a consultation with George Jallo at Johns Hopkins.  We made our list of pros and cons, Bora dialed into his network for information that we could triangulate too.  He also gave me brotherly guidance on Last Will, Health Care proxies, and things that you don’t ever consider when you are going through something like this.  I am forever grateful for that.  He held me accountable to the end goal which was a successful surgery.

While all this was going on, I had some “episode” while driving.  It was declared  a near syncope but It wasn’t like blacking out.  All of a sudden, the road was jumping back and forth, I was seeing white flashes, and I was having double vision.  I was on my way to work at the time and I just drove straight to Jordan Hospital in Plymouth,MA.  I should have pulled over and dialed 911.  I walked into the ER and they immediately took me in.  Put an IV in me and sent me for a CT to make sure the tumor hadn’t started to bleed.  I was exhausted.  The images showed no bleeding but they packed me into an ambulance and sent me to Mass General.  That was on April 29th.  I stayed in the MGH short stay observation area until May 1st.  I turned 40 on April 30th in MGH and spent that day in a bathrobe looking out the hospital window at the Charles River.  More MRIs.  More CTs w/contrast.  Echocardiograms.  Full Court press.   That evening, I met Dr. Curry.  By that time, I had a list of questions written out for him.  He showed me the MRIs and explained to me that he was 95% sure that the tumor was a hemangioblastoma based on the vascularity on the CT but you can’t call it until you take it out.  He discussed the risks of the surgery as well as his surgical approach.  He made an appointment for me to come back to his office the following week to discuss the pre-operative process.  After, I was discharged, I had 3 more of those episodes over a period of 1 month.  It was like total sensory nerve overload going on.  The doctor restricted me to no coffee, no alcohol, and limited driving.

I also should say that my place of employment has been outstanding from a support network.  It’s easy to see why the division that I work in is so successful.  I had unconditional support from the top down.  Dave Pierce(who has always given me great advice), Susan Gonzalez(who pushes me to reach my potential), Art Butcher(who was aware and encouraged me through each of these events of adversity, Joy Peetermans (who treats me like her family member), Rich Cohen (who always kept humor in our mix), John Hutchins'( who could teach a class on wisdom), Bryan Bannon for schlepping me around and most of all to my entire team whom I would gladly give the shirt off my back any day of the week..  I have the strongest marketing team in med devices and I’m proud of them.

So , on June 2nd, i was supposed to go into my procedure but we had a false start.  Dr. Curry was stuck overseas in Europe and was not going to make it back.  So my case got bumped to Friday June 6.   In a way, it’s a relief because you get to have a virgin skull for a few more days but the anxiety definitely doesn’t go away.  I was supposed to be in Peri-op by 5:30am so my mom and I decided to stay at the Cambridge Marriott so we didnt’ have to get up at 3am and travel from Duxbury.  Surgery at Mass General starts out like a cattle call.  There are a lot of patients ready to go at 5:30.  Once I made it back to my changing room, I said good-by to my kung fu pants and trainers for the “dignity-less” johnny and traction socks.(Note to all my device people- there is an unmet need in hospital wear)  This was the part of the journey where I would separate from my mom.  She was pretty anxious at this point and all I could imagine was her pacing around the family waiting room.  From here, you get wheeled up to the Neuro ORs.   This guy Grigory with a heavy Eastern European accent took me to the OR.  That dude was straight out of the movie “Hostel”. The OR is buzzing at 6am.  Like bees swarming around a hive. What happened next was unexpected.  Julia from neurology started taking measurements on my head and making tic marks with a sharpie.  By the time I knew it, she had glued these crazy looking gold receptor cups all over my head, shoulders, arms, legs.  It looked like I was wired for sound.  In hindsight, those are for precise mapping of my nerves/cord/stem so that any slight change can be detected.  She did a good job putting them on.  After, I had my anesthesia team come in.  They put a couple of IVs in along with an A line(arterial catheter) which allows for precise control over your blood pressure when it’s critical to keep it stable in your head..  Next came a shot of Versed…ahhh.  And that was it.  They asked me what music I wanted on and I chose the Allman Brothers.    The OR suite was incredible.  They had all of my MRI images loaded on big screen TVs.  There was also a OR nurse ready to go with a uro cath as soon as I was knocked out.  The last thing I remember was listening to “Midnight Rider” and thinking about what my buddy Rob told me,” If you see the white light, don’t go to it.”  I’m laughing as I write that.

The surgery was scheduled for 7 hours but Dr. Curry and his residents knocked it out in  4 hrs.  It was a sub-opcipital craniotomy and C-1 laminectomy.  I don’t really remember waking up in the OR and them pulling the ET tube.  That’s a mystery.  Although I understand that I was very aggressive and there were restraints nearby.  I dropped at least 50 F bombs in 5 minutes.  Good to know that my spirit is still alive and well.  I remember having Carrie as my first ICU nurse.  She was awesome.  When I came too, I wiggled my big toes and then my fingers.  I realized at that point exactly what I had gone through.  People say brain surgery is surreal.  It never really makes sense even when you understand it.  It’s true.  It doesn’t make any sense.  Apparently, people wake up from anesthesia nauseous and throwing up.  I woke up like I was starting an eating contest(lots of steroids)  I couldn’t get enough food.  Physically, I had 22 metal staples running down my dorsal midline under a bandage.  I also had bloody oozing spots on my temples where the OR team literally vices your head into a contraption so you can’t move during surgery.  And then you have clumps of glue through your hair where the gold nerve receptors were attached.  Oh….Almost forgot, you have what my sisters affectionately called “moon face” too.  You get loaded up with decadron(steroids) to keep the swelling down on your brain(literally keeps you alive) so things can heal.  Somewhere in that moon face are your eyes.  For me, it looked like I had a beach ball inflated inside my head.

All craniotomy cases at MGH go to ICU right away.  Dr. Curry came up and saw us around 2pm.  He’s a stud.   I was really glad to see him although I think my mom and sister have the hots for him,  He said that everything went as planned, our agreed approach to the surgery worked out really well.    Curry is the man.  If you need a surgeon for a complex case, he is your man.

After, the ICU I got moved up to a neuro floor.  It’s less intense and the people up there have a greater range of issues.  I think more spine stuff from what I could tell.  The place looks like a spa too.  Nice plants everywhere, everyone smiling and asking if they can help you.  Very peaceful   I got the chance to meet a lot of different people up there including Paul Dunn.  He just had a cervical laminectomy but it didn’t keep him down.  He was a former Green Beret and I loved listening to his stories.   I just focused on walking.  I was just really happy that I could keep moving.  So I just started walking.  My sister Anneliese walked with me too.   Then I walked to get coffee.  Then I walked to get my friend Paul coffee.  I just kept walking.  The nurses are really experienced awesome professionals there.

I was admitted on Friday morning at 5:30am.  I was discharged on Monday at 12:30pm.  I was off pain medication in 6 days.  Off of Tylenol in 9 days.  While the recovery process is still very long I am attributing 100% of this early success to my fitness level that I achieved from Crossfit.    Critics can say what they want but your recovery is directly proportionate to your fitness status going into surgery.  I spent the entire 1.5 months leading up to the surgery training intensely for it.

Oh, and one last thing…So help me lord if I catch the surgical resident that shaved that reverse Vulcan mullet into the back of my head……..

 

staplestakeoff

Special thanks to my family and close friends for having the patience to support me through this. There was a lot of anxiety at times.  To my WOD buddies Jon, AD, Mike McG, Henry, Mike H., Rich C. , COB, KK, Amy K., Ian, Bryan B, Rich J, Hunter, Brandi, the whole Crossfit Magnitude community.  And to everyone that reached out to me through text, phone calls, FB, etc. Thank you. That kept me motivated.

Divorce sucks for everyone involved.  It will definitely change your life- most likely for the better.  It made me a much better father and friend.   My buddy Matt was taken 40 years too soon.  I’m lucky to have been close friends with someone of his caliber for the 39 years that he was alive.  Rare brain tumors suck too and having surgery to remove one isn’t much fun.  But there is always someone that has it worse than you.  Go out and live your life like you mean it.

Ryan

Advertisements