Category: Uncategorized

So another broad post with an all encompassing range of emotions and experiences.  My daughter Allie will undoubtedly let me know that this is way too long!  It’s my blog and I’ll write what I want too :-).  I understand that it is a rather robust read, but I have a lot to share and sharing is one of the healthiest things I do these days and while I write for you to read, I write for me to heal.  

I’ll also warn you that there is some content that is awkward, difficult to share, that some may be uncomfortable with.  It’s all part of the reality that I am experiencing.  Enough of you have demonstrated that you ‘get me’,   Whether you’re feeling the reality of what a cancer patient experiences, whether you’re becoming more in touch with you’re own mortality or whether you’re relating to an experience of your own, I am overwhelming humbled by the way many of you share your appreciation of my posts.  You all inspire me.  Please take a moment if you feel you benefit and share with your friends – whether sending the link or doing a Facebook share.  The more people that I am able to reach, the greater the chance that my experiences will provide people tools to handle or learn to communicate their own adversities.  It was a huge risk I took to share openly what I am dealing with. Writing brings me a feeling of purpose at a time when purpose has the potential to dwindle.  There are references in this posts that refer back to prior posts.  I try and point them out for first time readers.

We arrived back at home last Wednesday night.  I was freaking wired on a continuing buzz from the prednisone protocol I had taken on Tuesday.  I was 40 hours with little more than a brief doze by the time we got back to the house and could just feel the meltdown beginning to sink in.  Had to skip the Flyers game.   So chair watching from the living room was an easy alternative.  I hate missing  Flyer games.  The Dayton Flyers are a great community asset,  they deliver entertainment and exciting basketball and have a great organization continuously working  to enhance the customer experience.  I’m glad that Felice & I made the Flyers a center piece of our family as our children grew.  After the game, I got an incredible nights sleep.  

Thursday was a so/so day.  Woke up with bad nausea, low energy and didn’t go to workout.  Let’s be clear, my workouts with my trainer resemble the workout of their 90 year-old women clients these days, except every one of those women kick my ass.  Still, trying to keep a little bit of the mental edge and going through the steps of trying to maintain at least a small level of physical activity.  Stayed home most of the day, but did get out and run some productive errands.  

Friday started out much the same way, but I forced myself to get to a dinner with our close friends – Kerry and Art Harlan.  They have been integral part of the phantom gardeners that show up with seasonal plants to brighten our yard.  The same wonderful group that anonymously initiated the #ShaneStrong bands.  Honestly, I was dreading being a bump on the log, as many of you have had to experience when dining with me recently.  I ended up feeling good, and we had a great meal and really enjoyed the evening.  We share the love of our kids, the basis for how we became friends to begin with, just a great evening with really nice, caring friends.  And then it wasn’t.

Shortly after going to bed I found myself in immense abdominal discomfort.  I had experienced this pain a couple times before but not nearly this intense.  Felice knew I wasn’t comfortable but she had no idea the level of discomfort I was experiencing.  I was pretty sure I was probably experiencing some really intense gas.  Ok this is where the conversation gets awkward.  It likely is going to represent just a little TMI for many of you, but it’s the reality of GI tract based disease.  I think as a cancer patient, we have to accept the loss of our privacy, much in the way that child bearing women lose their privacy with pregnancy.  When I go to the doc, my bowels are the central discussion points with the nurse, then the Fellow and ultimately the Doctor.  Detailed conversations about pooping happen at least three times each visit and more when I have scans.   This requires unnatural and unpleasant observation practices as well.  I’m taken back to my sophomore year at Indiana.  I was living in the Delta Chi fraternity.  A shit hole of a house with the least modern of plumbing facilities, including multiple side by side toilets without dividers.  Ok, I admit that I grew up spoiled and had private use of a bathroom.  Even in the facility-challenged camp I attended, we had dividers.  I walked into the bathroom one day, and there was a sign above one of the johns pointing down.  Of course, human nature requires that you see what the sign is pointing towards.  I will never forget inching over to the john, looking down and seeing this magnificent specimen with a toothpick that had a little flagged sign protruding from the specimen that said ‘piece of art – 12.1”.  The guy that measured and proudly marked his specimen is one of the craziest and kindest person that I’ve ever met.  We’ve stayed in touch and I’m pretty certain that given the opportunity, he would still mark his specimen proudly – even in a public restroom – that’s how crazy and fun-loving this guy is.   So, I’ve reverted to those college days and must inspect specimens to be prepared to discuss with my doc.  Dr. Wolff is very matter of fact ‘Look Mike, you’re bowels are your bowels.  We’ll give you the tools, but you need to manage the line between constipation and diarrhea.  I suggest you don’t over react, or you’ll have wild swings”  Managing this is experiential.  So here I find myself off the line, getting ready to face treatments that are potentially going to cause severe nausea and severe diarrhea.  Those issues are nuisance issues.  The remedy for the nausea creates constipation.  So now you get that added nuance.  If you take the anti nausea, you have to offset with some anti-constipation.  If you over do the anti-constipation, you’re likely to trigger aggressive diarrhea.  Saturday, my gas pains began to manifest as constipation.  The problem is that as the gas and the constipation build, the pain apply’s pressure that creates immense pain.  I couldn’t move Saturday.    So I jumped into the broad spectrum of remedies to relieve this situation.  In the past, I was usually able to resolve the matter in 24 hours or so.  The pain just intensified through the day and any movement in a horizontal position created extraordinary pain, rippling with immediately energy drain.  Flyers game missed – watched some of it from the chair.  Saturday night was a little better, but still experienced a lot of pain.  Now Felice is urging me to text my doc.  Thing is, I know that my pain is concerning to her, but I know exactly what I am dealing with.  My doc gives me the courtesy of encouraging me to text him if I need him.  He answers me immediately.  That courtesy needs to be matched with thoughtfulness of when to use.  It’s Sunday.  The man works 8 days a week.  The only answer he can give is ‘if your pain is unmanageable go to the ER.  I can tell you that the thought of having to go to the ER to sit in pain while waiting to get in, to be prodded, poked and scanned to learn what I already know was just not in the cards.  We had to skip going to Cincinnati to see my nephew, niece and their three adorable boys play with my grand daughter on Sunday – more of a disappointment than those Flyer games.  I continued to have signs of relief, but experienced horrible pain again Sunday night.  Felice encouraged (aka nagged) me to move.  I did 3 – 1 lap slow walks around the first floor of our house. My good friend, Marc Friedman checked in on me Sunday.  He’s a wonderful friend.  He asked if I was doing any better.  I said I was feeling better, but still had some moderate pain going on.  He said to let him know if I wanted to go for a walk.  Now that was funny! I shared the level of activity that I had risen too.  Plus, I can’t handle cold weather – at all right now.  I dress like an  eskimo most days.  Love the offer, like the vision of me being able to take a short walk outside on a warmer day, love the encouragement from a guy that thinks a 30 mile day on his bike is a ‘soft workout’.   The thought of trying to walk up the driveway to the street was more than a little daunting on this particular day.  I promised Felice I would call my local oncologist on Monday morning.  That call with detailed discussion lead to the conclusion that I was severely constipated.  More relief came Monday.  Switched sides of the bed with Felice Monday night to change the direction of my horizontal position coming in and out of bed.  It was the first time in 35 plus years that she had ever slept on the right side of the bed.  Honestly, I wasn’t exactly certain that she would do it.  She is a great sleeper and very particular about her sleep conditions.  I told Jordan that I expected that I would likely end up on the recliner, but of course, she immediately agreed as she is totally selfless when it comes to anything that might bring me comfort.  Every inch of every movement to get in and out of bed, brought on horrible pain.  It was definitely 8 caliber pain and that might be under estimated.  

Tuesday, I went for labs and to see the doc.  We discussed my pain.  He advised that while it may be constipation,  there was at least an equal likelihood that my disease was causing the pain.  I had anticipated possible pancreatitis or cholangitis, but hadn’t considered growing disease.  That was a little devastating to hear.  G-d agreed.  I went up to the treatment facility next.  My sister, Cindy, had joined us by this time.  She could tell that I was distracted by the situation.  Within an hour, prior to any delivery of drugs, I began to feel the pain subside.  G-d was sending me a message.  If you don’t know my thoughts on religion, go back and read my ‘Belief’ post from a couple months ago.  Anyway, G-d was telling me – Mike, this is constipation.  You need this extra burden of worrying about disease progression to be removed right now, you need to be freed of that worry.  I was being sent a clear signal.  That’s what I believe.   

My onsite treatment starts with steroids and anti-nausea meds.  These cause their own side effect issues, but help immensely with the side effects of the chemo.  The first drug of the filforinox cocktail is Irinotecan.  It is supposed to be the most toxic of the drugs and causes a variety of side effects.  The second drug of the cocktail is oxaliplatin.  The on-site treatment took about 7 hours and aside from the brief allergic reaction, was very manageable.  Of course, the pre-drugs help everything in the initial days of treatment.  The final take-home drug is fluorouracil nicknamed (5-FU).  Got to wonder about a drug with a 5 FU nickname :-).  It drips very slowly over the next 48 hours.  When I say slowly, it is releasing about 5cc every 30 seconds.  The list of common side effects are long.  The likelihood that the drugs work is high, the question is whether or not my body tolerates it.  By body, I mean toxicity issues.  If it works and my body tolerates it, the side effects will be what they are and I will deal with them!

While having my chemo I participated in my final Feast of Giving meeting before the event via my phone.  For those of you that aren’t familiar with the Feast of Giving, it’s one of my greatest philanthropic passions and one of the things that I get great pleasure from being involved with.  It is also a source of great pride that my family has embraced the event as well.  The Feast of Giving is the largest-known, community Thanksgiving celebration in the world.  We are entering our 50th year of an event that originated as the Beerman Family Thanksgiving Dinner.  When the Beerman family left Dayton, they left the event behind, on short notice.  Dr. Steve Levitt and Dr. Tom Olsen partnered with Fox45 / ABC 22 to save the event from dying.  In just 6 weeks, they saved the event.  When I learned of what they did, I asked for the opportunity to get involved.  At first, it was my former company that jumped in to assist.  I’m proud to say that many of my former associates still participate annually in this extraordinary event even as the company has ended their financial support, in part because I stopped asking.  The Shane Family is involved at every level and I am immensely proud of the role that each of them play.  My grand father and father were active civic and community servants.  I have always wanted my family to understand the importance of community duty.  For me, it extends far beyond writing a check.  The responsibility to give back to our community is one that it is a privilege to be able to do in whatever capacity possible.  We have a team of dedicated community members that give their time to execute the event.  The group we have compiled is 15-20 volunteers that each own various tasks, dispersing the workload and providing leadership succession to assure the event’s continuity.  We plan a community Thanksgiving celebration for approximately 8,000 patrons each year.  We have Grammy award winning, Shirley Murdoch perform the national anthem.  We have a locally renown band – The Glen Bowman Band – perform with a full dance floor.  We entertain approximately 700 children each year in our Kid’s room – full of arts and crafts with a DJ that plays age appropriate dance music.  We have 12 tastefully decorated service stations to serve our patrons, with service providers to deliver trays, get our patrons drinks and special services for disabled patrons.  We provide a place for small families, elderly, lonely and the under served to jointly celebrate Thanksgiving.   We also provide caps and gloves to all that need.  The Regional Transit Authority provides free transportation county wide to provide transportation for our patrons.  We have over 400 volunteers that give of themselves to enrich their lives and enrich the lives of others on Thanksgiving day.  We unfortunately have to turn away over a hundred other volunteer hopefuls, but offer them the opportunity to come share in the event by stopping down and having a meal, eating one of the 8,000 slices of pie that will be served.  Those 8,000 pieces of pie are cut by an area football team.  Local companies donate services, ranging from delivering our decorations from storage, to doing set up, to providing Bill’s Donuts to our volunteers.  Many food items are donated.  Our turkeys are provided from a turkey farm – Cooper Turkey’s in Van Wert, OH.  This isn’t even their primary service market.  Year in, year out – Cooper Farms which raised a presidential turkey for an Obama Administration Thanksgiving (I believe their Turkey was pardoned) donates 2 tons of wonderful Turkey Breasts.  Many other local companies help in whatever way they can to help us pull off this extraordinary event.    The Docs, our family and others underwrite the cost and are building an endowment to assure that the feast will continue in perpetuity.  The Feast of Giving is a true example of the intersection of community, government, and philanthropy all working together in fellowship so that no person in our community goes without a warm meal in a warm environment to celebrate one of the greatest days in America.  So missing the meeting was not an option.  The Steering committee patiently dealt with passing a cell phone around to conduct our final walkthrough of the event.  It’s a fine oiled machine.  Still with 8,000 patrons, there are always moving parts that need detailed ownership.  As we continued the call, my tongue began to feel heavy and I started having problems pronouncing words.  During one of the reports, I muted my phone and called over the nurse.  I explained what I was experiencing.  While I went back to my call, she halted treatment, called in the Nurse Practitioner and by the end of my call were treating me for an allergic reaction to one of the drugs.  I classified this moment as a Megan ‘badass’ moment.  (Megan ‘badass’ is defined in recent posts).

My son-in-law, Adam, one of the two best gifts that my daughter has brought to us, sent me a text.  To understand Adam, you must go a level under his fairly serious, although fun-loving exterior to his well timed subtle humor.  The text simply read – You still backed up?  below the following video:

This is a video from when our little angel, Sid, was about 7 months old.  I couldn’t stop laughing – hope you get a little laughter too, but in that brief moment, my grand daughter reflects subtle comparisons to my last three days….I’ve probably played this 20 times today and each time I painlessly am able to laugh my ass off…hope you get a little laughter from it as well.

I went on to complete the in-facility portion of the treatment and felt really good as we left with my take home treatment. The final drug in the trilogy of drugs is a slow dose 48 hour drip.  As I write this, I feel really good.  I’m riding a major steroid buzz, but my pain is almost entirely gone.  I have opted to sleep (if I sleep) in a recliner tonight.  I want to avoid creating any stress or inflammation to the pain site.  I figured my constipation had to create some level of internal inflammation that I want to heal.  Of course, I’m relying on the education I have developed from ER, Grey’s Anatomy, The Resident, the Good Doctor and New Amsterdam as the foundation of my diagnostic prowess.

I’ve been warned to expect to feel like crap (appropriate term), but I honestly believe that some of that is oversell.  We’ll see what the next few days bring.  In the meantime, I am so relieved (in many ways) to have had my pain lifted  and am celebrating feeling good and ready to deal with whatever is ahead.  

Jordan and I spent the two hours riding my steroid buzz deep diving into our Fantasy Football team.  For those that don’t know me well, one of my great pleasures is being the commissioner for the last 31 years of a Fantasy Football league.  There is money involved, plenty of it, but we chase the trophy.  Our league started before the internet, before software packages, so we used manual scoring from the USA Today box scores.  Once Al Gore brought us the Internet, I then designed a database to build these reports and created a pretty strong package over the early years.  At some point one of the owners suggested that I market my database to fantasy football enthusiasts.  My brilliant response ‘Who gives a shit about fantasy football”.  TRUTH #3:  Market vision was never a strength!  So now, there are three of our teams that have become generational.  Jordan and I spend an inordinate amount of time talking about fantasy football.  He is my partner on this team.  We compete in a Family league with the Abromowitz Clan, my nephews, and a couple of close football friends.  My brother-in-law, Ron was a participant and we now have a traveling trophy that is in his memory that we chase to own.  Fantasy football is one of those things that brings joy to each day – it’s the little things.

So I feel like a celebration is in order.  No real reason except sometimes it’s just fun to celebrate.  TRUTH #4 – you can’t buy health.  You can’t buy love (though many people try).  Buying things can’t bring you happiness, but a little retail therapy, shared with those you love can be a lot of fun!  To know me is to know that my definition of retail therapy means only one thing – technology spending spree!  So that’s the way I’m celebrating.  Need to push up those Apple results next quarter – going to do my part. 

I’ve heard from so many of you in the last week.  I’ve heard from several former associates.  People humbling me, sharing the wonderful feelings they had when I had the good fortune of working with them. I even heard from a former associate that together, we shared a less than favorable business experience.  An unfortunate reality of circumstances, turned ugly.  I was touched by his contacting me.  When former adversaries can put those hard feelings aside and reach out to show support, that’s touching in a way that brings hope that humanity is alive and well.  TRUTH #5:  Regardless of the unfortunate state of affairs that we witness daily,  humanity is still alive and well in our society and we need to embrace and foster its existence. 

It’s now 5:00 a.m. and I am going to try to see if sleep is out there for me by watching an episode or several of House of Cards.  Loved that show until it fell apart.  Going to give it another chance.                                                                       

Thanks to all that follow me, share me with others, pray for me and ‘get me’.  It’s an honor to have you all share in my experiences and my developing passion of sharing them with you.  

I will be sending out a special Thanksgiving message next week – sharing the meaning of Thanksgiving to me.  

Love, Mike.  #cancersucks #boocancer. #megansabadass #ShaneStrong.  

In regards to yesterday’s post, I want to clear up what I believe I have made pretty obvious throughout all my posts – I appreciate all forms of support, prayers, and well wishes, including ‘Stay strong’. I also failed to mention one of my favorite recent text exchanges. My sister, Cindy, checks in on me pretty regularly. She checked in on Sunday and I was not having the best day. If somebody is kind enough to text me and ask me how I’m doing, I respond with real time, straight up info. She gave the perfect response to my complaining. “Sorry about today. Each day has a new beginning. Hopefully tomorrow will be a better day”. And it was. Every day since Sunday has been a better day – at least from a physical perspective. She brought that outlook to mind when it wasn’t clear to me that the next day would start out fresh and each new day brings a fresh opportunity. Thanks for that Cindy! That’s why I always thank you all for your messages. You never know when one of them is going to make a difference. I’ve learned how much a quick text, email or phone call can mean.

So you’re going to get a really raw ‘stream of the next 24 hours, or I suppose it will be the previous 24 hours when I post this.’ I’m writing this as I feel it, it helps me more than you know.

My daughter Allie paid me the biggest compliment ever. She told me that she liked my last post. She isn’t a reader, she lives my blog real time, sometimes I think it is hard for her to read my posts, I understand. I told her that I write the blog for me. It makes me feel really good that people get something from reading. I hope that one day my story will help somebody with what ever path they may find themselves on. I like being read, I like being shared, it makes me feel like my situation has a chance of making a difference. I might not ever get around to writing a book, but if nothing else, my blog gives me an opportunity to leave a bit of a legacy of what my life is all about. So I really understand why she may not sometimes feel up to reading my entire blog, it’s raw and hits home hard. Having her tell me she liked it – that made me feel good. My friend Megan is big on the little things mattering, no shit, the little things matter!

Yesterday, I went back to the hospital to have acupuncture. I stopped by medical records to see if my scan report was available. I figured why wait? I’m at the hospital and reports are ready. MD Anderson does a great job in making your reports available almost real time. Getting the reports can be a double edge sword. I feel there is more upside. If the news is good, I avoid hours of anticipation. If the news isn’t good, I can be prepared and avoid the awkwardness that accompanies my Doc having to report bad news. Unfortunately, the news is tough. There has been a pretty significant amount of increased tumor activity over the last six weeks. The good news is that my blood work continues to look really good, some increases in secondary markers, but all my enzymes, kidney function and various other critical numbers are good. All overshadowed by new activity, increases in existing activity, new metastatic progression to my pelvic region. None of this is the news we were looking for, but it’s the news we’ve received.

What a timely post of Megan’s story. In a time like this, it’s very easy for me to say to myself – how do Megan & Rock handle adversity. They punch it in the f&^@ing face! That’s what we do – we fight! Warrior up, be a badass!

My UBER driver back to the hotel after my acupuncture was a former MD Nurse. They paid for her education, she worked there for years. She loved it there, but couldn’t take it. It’s a tough job. This driver, Michelle, has had an interesting medical history herself and has been battling chronic disease since she was young. She shared her story. She said something that I also believe; ‘Everybody is going to die, we don’t generally have a choice in how we die, but we have a choice in how we live’. It amazes me the number of times I run into these inspiring people in the least likely of places. Michelle, my uber driver, she was one of those people.

Last night, I canceled dinner with my cousins. I just needed some time to collect my thoughts and not feel like I needed to be engaged. My cousins would have been happy to be there to prop me up, but were very understanding when I told them why I needed to cancel. Laraine and Stewart have been wonderful and set a standard of being there for family in time of need.

Felice made me read my mantra. For those that haven’t read my mantra, You can click on the link below.  I wrote it when i was diagnosed and it represents how I moved through the diagnostic phase into the treatment phase and how I must confront my realities. We’ve taken steps forward, we’ve taken steps back.

Mike’s Mantra

I believe and often talk about the ebb and flow phenomena. It’s most visible in sports – particularly noticeable in both college football and basketball. Personally, I think it presents really clearly in basketball. The game goes in one direction for a while, then flows back in the other direction for a while- it’s a constant ebb and flow and winning is about being on the right side of the ebb/flow at the end of the game. Same holds true on the golf course, in business, and in life – things just don’t generally work in straight lines. I really need to swing this momentum back in the other direction. It’s time to swing it back. It’s just really damn frustrating.

I’m writing now at 4:45 am. I’m on a major prednisone buzz. I have to do a prednisone protocol prior to doing scans due to a reaction I had to iodine 25 years ago. It’s a precaution against having another reaction, which, while probably highly unlikely, has the potential for being a progressively worse reaction. So I take 150 mg of prednisone over the 13 hours prior to my scans and then have a problem sleeping for at least a couple days. I’m sure that the news I received today isn’t helping me sleep, but I’m definitely riding the prednisone buzz!

We went to see Dr. Wolff and he was surprised that medical records released my report. I explained that it was really the right approach for me. We agree that I’m an educated patient and I know what my situation is. Being able to process the information and come to talk next steps was what worked best for me. I was relieved that Dr. Wolff was prepared with a very specific, detailed action plan and spent considerable amount of time discussing his thoughts. I’m going to start a very aggressive chemo called Folfirinox as soon as possible. It’s a tough drug cocktail – three potent chemos. The Doc says I’m healthy and strong and can handle tough drugs and I need to throw whatever I can to slow this shit down. He says he feels confident that this will help, but there are no guarantees. We’re going to do the treatments in Dayton. It’s a 48 hour infusion. I start at the cancer center for IV drugs for anti nausea and steroids and then they send me home with a pump that drips through my port for the next 48 hours. It either comes with a shoulder pack or fanny pack, so I can remain as active as able to during that 48 hour window, but he warned me that I might not feel so good. We’ll see, Doc has always presented the worst of the side effects and I’ve generally handled the treatments with less toxic reactions than anticipated. Trust me, I’m not under estimating the difficulty of what’s ahead, but there are a lot of success stories out there for this proven protocol. I’ll also be doing monthly infusions to ‘simionize’ my bones to prevent further progression of the metastatic lesion on my left side. It’s small and Doc is hopeful that the chemo will attack that. Still we need to protect the bones from further progression. After the 48 hours, I’m off for 10 days and will likely feel a little yuck for a good portion of that 10 days. I’ll have to maintain a warrior attitude and will look for this community to prop me up! After two treatments, I’ll go back to Houston, likely in early December. We’re going to do a new tissue biopsy then to run new tests for potential immunotherapy options. I’m glad that my doc had a plan ready to execute with thoughts of the next steps in the event that we need next steps. The Doc agreed that it is normal that I have heightened concerns about my situation, but that it isn’t time to sweat. I really have no choice, I have to have faith that this will work. We’ll need your prayers, your support and your positive energy. This is definitely a tough path, but Dorothy didn’t have an easy path to Oz.

So since I’m out of the trial, we were able to catch an early flight back and hope to feel well enough to get to The Dayton Flyer’s game tonight. Go Flyers. Looking forward to another exciting season with our UD Flyers.

Thank you all for your continued support. Your text messages, emails and phone calls are so helpful to my psyche. It’s the little things.

I’ll be in touch, Mike

#ShaneStrong #cancersucks #BooCancer

Greetings from Houston.  Hard to believe that it’s been almost 3 weeks since my last visit.  It was really nice to have a couple weeks at home.

TRUTH – The 2nd cycle has definitely worn a bit more on me than the 1st 3 week cycle.  Some of the side effects have become moderate.  I’m managing the cuts on my hands pretty well.  It’s a little freaky seeing your skin open up small cuts almost real time.  They start out as a small slit, slightly wider and deeper than a paper cut.  Then it grows.  That’s wild.  My skin discoloration is really noticeable on the palm of my hands.  It looks like I need to go wash my hands.  That’s freaky.  My bottom lip has peeled a couple layers, so I really have to be careful what touches my lips. I can’t put a hot cup of coffee or a warm cup of tea up to my mouth.  I have to manage that.  Anything with any spice at all (which I really haven’t felt like anyway) burns a lot.  These things are nuisances – certainly aren’t impacting me in a material way.  I have some moderate indigestion from time to time, usually at night, for which there are few things that I can take at this point in my trial that provide instant relief, and that serves to be a nuisance.  Fortunately, it isn’t a ‘daily thing’ so I deal with that.  The nausea, now that definitely has my attention.  About as often as not my morning starts out feeling quite nauseated.  Generally by mid morning, it’s subsided and my day moves on.  Other days, it just doesn’t leave.  The drug I would like to use for this is also not permitted at this point in my trial.  The alternate drug that they offer has some potential side effects that I haven’t been willing, at least to this point, to risk.  That may change :-).  I manage the nausea pretty well most days and there are days where it is a virtual non issue, like today!  Then there’s the fatigue.  That has knocked me on my butt a couple times.  I’ve had a couple days this cycle where nap to nap to nap was just the way it was.  That’s really frustrating when it happens.  Fortunately, that hasn’t been a regular issue.  On other days, I just need a nap.  I am good with that.  I’ll watch a show, fall asleep, nap for an hour and maybe watch another show and doze a little more.  There are other days when it is not an issue at all.  Fortunately, it hasn’t prevented me from making meetings or holding a reasonable schedule.  I have had to eliminate early morning meetings – just can’t do it.  The one side effect I am really struggling with is being cold.  It’s ridiculous.  On a mid 50’s day, I’m wearing a thin base thermal layer, a heavier secondary layer with a warm sweater on top.  I remember, back in the day at Meadowbrook Country Club, getting on the tee at 90+ degrees, and seeing Jack Margolis, then in his 80’s, walking around in long slacks and a cardigan!  Wow, I remember wondering how somebody could do that.  I’m not quite there, but…  Sometimes I get chills and have to wrap myself in a warm blanket in the middle of the day.  We landed in Houston and it was in the 70’s, I took my outer sweater off as soon as we were outside.  I’m not excited about coming back home this week to welcome some real winter temps.  It’s just another nuisance, but when I’m sitting in a meeting and I have to put my north face over my legs, or wear it – it’s a bit awkward.  All of these have become pretty manageable individually, collectively, it tends to chip away at my ability to maintain the positive outlook I want and need to maintain.  Then there’s the shortness of breath.  Now that definitely affects me a lot.  On a good day recently, I hopped on the treadmill to get a little walk in.  It was raining outside.  I lasted about 15 minutes.  My max speed hit 3.0 mph for about a minute.  Went to the UD game and walked up the arena stairs and got to the concourse, I had to stop to catch my breath.  Walking to the gates at the airport can be a solid workout for me.  Walking up the jetway after the flight, I was winded by the time we get into the terminal.  There are definitely days when this is worse than others, but for the most part, it appears to recur on a pretty regular basis.  The last couple days have been much better though. 

This all is a big ass wake-up call on the realities of the toxic nature of treatment.  I’m curious to see my blood work and see if the side effects are creating any significant toxicity.  Just to be clear, curious is code word for scared shitless.  Seriously, the one side effect that is really difficult to manage is the emotional side effect.  I can find myself getting emotional without a real reason.  I work hard on this.  Felice will tell you that my outlook, attitude and emotional makeup is so much better on days that I feel good.  It’s true, it’s so hard to see beyond the collective impact of the side effects when they are piling up on me.  It’s those days that I tend to really struggle. 

Well intentioned people will tell me to stay strong.  I appreciate the intent, but what does that really mean?  I think in reality, it means they really have no clue what to say, so they go to the comfortable fall back about staying strong.  Honestly, I struggle with what the definition of strong really is, when it comes to this little battle I’m involved with.  Is strong supposed to be that I try to act as if these side effects aren’t real and shouldn’t be impacting me?  I really struggle.  That brings me to my friend Megan.  I’ve known Megan for almost 20 years, mostly peripherally through the relationship I developed with her husband and my very close friend, Rocky.  Rocky and I met after being paired together in a CEO Peer development group, now known as 10XCEO.  Rocky has a huge personality, packed with charisma.  We were both street savvy entrepreneurs that had started our company’s on a shoestring in our early 20’s.  We were both teetering between success and failure, but only knew what success looked like and knew we needed help.  We were put in a room with proven CEO’s, Harvard grads, MBA’s.  Another one of our early members was one of those more pedigreed CEO types, Les.  He rounded out our core trio.  Of course there were a number of other wonderful relationships forged, including our inspirational leader, Mark.  Those years of quarterly official meetings, often interspersed with mid quarter get togethers became the backbone to my personal and professional development and had a direct impact on the growth and success on both of our companies.  I believe that sometimes we forge unusual relationships and the basis of that relationship extends into aspects that we never would anticipate.  A little over 5 years ago, Megan was diagnosed with a rare form of kidney cancer.  At that time, my sister Margie, was in her later stages of her ovarian cancer battle, so the news of Megan’s diagnosis hit close to home and was the cause of great concern.  Megan is a badass!  She and Rocky set off to find the best medical care and the best treatment plan they could find while trying to maintain normalcy for their two children that were still at home.  Our trio from the CEO Peer group planned a couples trip to Carmel after our annual conference in Santa Clara in the fall of 2013 with spouses. It was the first time that the 6 of us had ever gotten together as couples and was a perfect time to get away.  My sister, Marge had passed away in July of that year and between her death, closing up her apartment and dealing with her estate, it was a timely getaway.  While Rocky and I were sitting in the conference, he received a text from Megan that her recent scans had shown a reoccurrence.  It was her first reoccurrence and that sent noticeable shockwaves through him.  He left the meeting, but they decided to continue on with our plans to go to Carmel for the weekend.  After witnessing the emotional roller coaster that Marge had gone through with every scan, every report, I had just a small sense of what Megan was going through.  Megan showed what a badass she was that weekend.  We went out for great hikes, had great meals, plenty of shopping time and Megan acted in a way that I couldn’t comprehend.  I expect when in private, there were a lot of emotions, but she was badass – best term to describe it.  I fast forward now almost 5 years.  Megan has gone through treatment after treatment, often difficult and painful treatments, far from home.  Often times having to be hospitalized in the ICU for days during the treatment, and then living as normal of a life as imaginable in between.  Megan and Rock were hoping to come visit us at the lake this summer.  My bond with Megan has grown ever deeper since my diagnosis.  I began to feel that Rocky had come into my life for a greater reason than just to be my CEO Peer.  He brought Megan into my life as a definition of strength.  Megan started having some pretty bad pain in her hip as a result of treatments that she has undergone.  They needed to defer the visit to Wisconsin and deal with that.  In early September, Megan’s platelets (critical blood number) dropped precipitously, requiring her to be hospitalized shortly after Labor Day.  She was transferred over to John Hopkins and placed in their ICU.  It was an immune related disorder that was as rare as her cancer.  The docs struggled to figure it out.  They were consulting with the best hematologists in the world trying to create an action plan.  She remained in ICU for the following 6 weeks.  During that time we went to DC before I was scheduled to come here to Houston to begin this trial.  We had hoped, when we planned the trip, to be able to get together with them, as we were getting together with Les and Michelle (Les’s wife) and another one of our peers and close friends – Deepak.  Of course, that wasn’t feasible at the time for them to be with us or us to visit them.  During dinner, I missed a call from Rocky.  I noticed that and my heart sank a little with worry.  I immediately went outside and returned the call, only to hear Megan’s voice.  The transfusions had given her a lift and hearing her voice was such an uprising moment for me.  My heart felt for them as friends, as parents, as people.  I haven’t spent a night in the hospital and couldn’t  relate at all to what that must be like, but I know for certainty that the hospital is no where near the comfort that home brings.  Her spirit and attitude were so positive.  We talked about a lot of things in those ten or fifteen minutes, but the comment that came out that rang so true is that cancer is a partnership.  I had commented on how great Rock was and how fortunate I am to have Felice caring for me every step of the way.  It is a partnership.  It’s a hard battle and our caregivers take a lot of shrapnel.  We talked about taking each day as they come and pushing ahead.  Later she sent me a text with a quote from Muhammad Ali:  “Don’t count the days, make the days count!”  Now that is some powerful shit!  After close to 7 weeks in the hospital, almost all in the ICU, Megan was released.  She was so excited to get home and was going to make a brief appearance at her son’s Engagement party.  I was so excited for them.  Unfortunately, later that day, her blood pressure took a big drop and she had to return to the hospital; disappointed, frustrated and scared.  She remained in the hospital, again, mostly in ICU working to figure out her platelets, and other symptoms that were causing discomfort and uncertainty.  Undergoing tests, infusions, treatments to get try and get her healthy and stable and ready to face whatever was next.  On Tuesday, October 30th, Megan was released. 

Her platelets were back to normal, still plagued with other symptoms that were creating discomfort, but stable and her scans show NO ACTIVE DISEASE.  I’d be lying if I said it didn’t bring tears.  I sent her a text expressing my joy and happiness for her.  She responded ‘It just shows that you have to go through a lot of crap to get some good news!!’  Come on man!  This woman has gone through so much over the last 5 years and maintains an attitude that I strive to adopt.  I responded ‘Shows a lot more than that Megan.  It shows that you are definitely a badass. ‘. That is a known.  It also shows that she sets the definition of strong.  I know what strong means.  

So now I’ve had my labs, I’ve had my scans and I wait until tomorrow to find out what is up.  I feel great today, felt great yesterday.  Megan is having a procedure done to attempt to alleviate her other symptoms.  To those that pray for me, please pray for Megan. 

Also want to thank both Megan and Rocky for allowing me to share their story.  Not everybody wants their story to be shared, I asked her to let me share because I felt that all of you would appreciate the inspiration and strength that she provides, I know I do.  These both are very special people! 

I’ll be back in touch soon to share what’s next for me.

Thanks for all your continued text messages, emails and phone calls.  Your support, your prayers matter.  

Mike #ShaneStrong #CancerSucks #CintronStrong #Megansabadass

While it’s only been 3 weeks since we started this clinical trial, it feels like a long time.  I’m sure that is due in part to all of the visits leading up to starting the trial, to our favorite new vacation getaway – MD Anderson – Houston.  This marks 5 of the last 6 weeks that we’ve been to Houston.  Sure, the allure of beautiful seaside get aways, lake homes, European vacations may be more preferred, but Houston has a special appeal to us right now.  Houston is sort of our center of hope these days.  I can’t say that it is my happy place, but maybe it’s my healthy place, or at least, the place that will give me the best shot at health.  

Funny how perspective changes so quickly.  I was talking with a cancer survivor the other night and we agreed that in a unique and obscure way, cancer has made us better.  Searching for a silver lining when diagnosed with a stage 4, inoperable, incurable disease takes some work, but I believe that there are silver linings.  Yes, I acknowledge that having cancer sucks, but once that is accepted as fact, now what?  Start to find the best way possible to survive and thrive while accepting cancer as the new normal.  

Last week, I went to the Bengals / Steelers game with Lindi, Adam and Jordan.  We always tailgate with the same group of friends that we have been tailgating with for years.  It was different this time.  This is the first time that I showed up at the tailgate since my diagnosis.  So shots of Tequila were replaced with shots of reality.  I was talking with one of my friends and he was sharing how much my situation pissed him off, how frustrated he was about it, how bad it made him feel.  I tried to respond, but got caught a little in the emotions of the moment.  There really isn’t much to say to disagree either.  He went on to say that he reads my blog and often reflects as to how he would cope with a similar situation.  It was somewhat of an awakening thought to me.  If there is a silver lining that I can hope for from my illness, the thought that I might help shape the way that people will handle a personal health crisis in a positive way, would be an awesome outcome.

As I was thinking later, I went back to a question I posed to somebody else at the tailgate – is knowing that I have a disease that will likely take my life a blessing or a curse?  I think the answer that comes to the minds of healthy people is – it’s a curse dumb ass!  I get it, but I am  viewing this from the perspective that we all are going to die one day, my path may be outlined, but nobody gets out alive!  Is it a curse to know, or is it a blessing?  

There are definitely blessings.  I see people that are constantly looking for things that will bring them happiness.  They’re searching for material possessions, for different ways to find happiness, but escaping the moment.  So busy in the search that they may be overlooking that what they’re looking for is right in front of them, if they slow down just long enough to see that it’s there. I think of it as the Dorothy syndrome.  I’m referring to Dorothy from the Wizard or Oz and that magical moment when the good fairy princess tells her that she always had the power to go home, but that she needed to figure it out on her own.  

When my situation unfolded, it became very clear to me that there are so many blessings that when I take the time to appreciate, greatly eclipse the curse.  Of course this is so much easier to say (and write) than it is to live by.  Every day I am mired in chasing a respite from the curse, trying to find my way to Oz, which puts the curse front and center.   I work hard to overcome that.  I work hard to engage in the daily activities that I love so much, whether it’s time with Felice, family, friends, golf, watching football, engaging with one of the various business interests or philanthropic causes I’m involved with or writing this blog.  I work hard to seek normalcy, find the blessings and enjoy normal life.  But like Dorothy,  it’s hard to ignore the Wicked Witch.

On this particular football Sunday, the somewhat routine activity of going to a game with some of my kids was more than just going to a game.  There was much more of a sense of how special these times are – just being together and doing something that we’ve been doing together for years.  In the backdrop, my family all has a heightened appreciation of our times together.  We don’t take those times for granted, we don’t assume that there will always be another moment to share, we realize that tomorrow is not guaranteed.  On one day when I was feeling particularly blue, my son shared a quote from Alice Morse Earle ‘Yesterday is history, tomorrow a mystery, today is a gift, that’s why it’s called the ‘present’.  While it’s pretty cliche, it’s the type of mindset that I believe one must adopt to get beyond whatever crap they’re dealing with in their day to day life.  It’s not easy to maintain this view, but I think it’s one that all can benefit from.  

So back to Houston :-).   We’re here to check and see how I’m doing after the first cycle of this trial.  As a reminder, a cycle is 21 days.  I take two different oral drugs – the base drug Xeloda and the trial drug Varlitinib (or placebo).  The Xeloda is 14 days on, 7 days off.  Varlitinib (placebo) is continuous, daily.   At this point, I am reasonably certain that I am on the trial drug, but there is no certainty.  I have a small rash on my chest that is likely a unique side effect to this drug.  The side effects have become a modest nuisance.  My hands are starting to have some cracking sores.  I have blisters on my lip.  I have irritation in my nose.  My GI tract is wrecking a little havoc with my bowels.  I am nauseous regularly, more recently presenting itself a bit like morning sickness.  I have some fatigue and best of all – my skin is a little bronze!  All of these are nothing more than inconvenient nuisances, but the bronze thing definitely freaked me out a bit.  People see me and comment on how healthy I look – ‘Hey Shane, you playing a lot of golf?’  ‘You look good, nice tan’.  Guess what, I haven’t played golf in two weeks and haven’t been in any sunshine – it’s the drugs!  I asked the Doc about it – we talked about what is causing my nice ‘bronze’ coloring as he describes it.  No concerns, just an effect of the drugs.

My blood work and other labs look really good.  My cancer marker has continued to drop, my liver enzymes and all other important numbers are solid.  So far, so good.  My body is managing the treatment and I continue on with the next round and come back to Houston in 3 weeks for scans.  That’s a blessing!

It’s a blessing that I have the ability to pursue world class care, pursue treatment options and have such a caring and loving family to feed me strength.  The prayers, support and care that so many of you offer me every day in so many different ways are such a difference maker.  So, the answer to my question isn’t as straight forward as it might appear – blessings are found everywhere.

Mike #ShaneStrong #cancersucks #findtheblessings #noplacelikehome

C1D8 – that’s clinical trial talk for Cycle 1 – Day 8.  Felice and I are here in Houston and had a fun filled day yesterday at our favorite Houston Hang out – M.D. Anderson’s Clinical Translational Research Center (CTRC) also known as temporary lab rat cages :-).

I was approved to be a subject in Clinical Trial: NCT03093870. 

What’s that mean?  The first thing it means is that the care plan is driven by the requirements of the trial sponsor, in this case, Aslan Pharmaceuticals.  They are recruiting 490 participants worldwide for this study.  I believe that there are 11 trial sites in the US and MD Anderson has an allotment of 15 subjects.

The purpose of the trial is to determine if the combination of Varlitinib (trial drug) and Capecitabine (Xeloda) works better than Capecitabine alone.

All subjects in the study receive  Xeloda.  Half the participants will receive the trial drug – Varlitinib, the other half will receive a placebo.  The only way that I’ll know if I’m receiving the trial drug will be certain side effects. It is a double blind study.  The subject doesn’t know and the Doctor doesn’t know.   Both drugs are oral.  It involves taking 8 pills twice a day.  Each cycle is 21 days.   Xeloda is 14 days on, 7 days off.  Varlitinib / placebo is daily.  

During the first cycle, I come to Houston each week for observation and toxicity checks.  The day starts early with labs.  Then I meet with the research nurse.  She coordinates  the rats (aka subjects) for various clinical research projects that she has been assigned to.  There is a huge amount of infrastructure that exists to support clinical trials.  There is an entire unit, which I reference above – CTRC, that handles all of the trial patients, administering drugs, conducting data gathering, and works with the trial sponsors on executing the trials in accordance with the trial protocol.  The trial sponsors, typically large pharmaceutical companies, pay big fees to the trial cites to conduct their studies.  The sponsors need access to qualified subjects, MD Anderson and other research driven facilities are obvious partners.  The hospitals gain their reputations off of the cutting edge treatments that they provide and luring patients which entrenches their position as key research partners.  This particular trial has very specific criteria based on the nature of disease, general health of the subjects, the number of previous chemotherapy treatment attempts, etc. 

Once I finish with the research nurse, Dr. Wolff comes in.  He checks out my labs, does a quick physical, discusses how I am handling any side effects and approves me to continue on, or at least that is the plan.   Once I’m done with the Doc, time to go check in to the CTRC.  The rooms are really small – large enough for a bed, chair and TV.  When the nurse, EKG tech, lab tech, Felice and I are all in there at the same time, there is no room to move.  The observation process called for by the study is very precise.  There needs to be a series of EKG’s completed 45 minutes prior to taking my dose of drugs.  Then another series of EKG’s 5 minutes before the dose followed immediately by a blood draw and then take the drugs at a precise time.  The nurse today was counting down the seconds until I took the dose, which appeared to be a little bit unnecessary.  After taking the dose, EKG’s and blood draws at specific intervals occur over the following 8 hours.  Fortunately, this extended observation period only occurs on D1 and D8.  After the first couple weeks – the observation windows occur at various times, generally at the end of each cycle.  

The biggest bureaucratic process is actually getting the drugs.  They don’t begin to process the request at the pharmacy until the Doc has signed off on the subjects participation or continued participation.  That order goes to the Investigational pharmacy.  That is a pharmacy that is in a different location from the general hospital pharmacy.  The investigational drugs are segregated from all other drugs.  There is a laborious process of dispensing the investigational drugs, going through a triple check before they are sent over to the hospital pharmacy.  All of this turns into wasted wait time for Felice and I.  We can’t check into the observation area until I have physical possession of the drugs.  On day 1, last week, it took almost three hours for the drugs to get to the pharmacy, which pushed back my observation time – we didn’t leave the hospital until right around midnight.  So why the hell am I going through all of this?  Chasing hope.  Pretty simple.  Dr. Wolff said that it is likely that Xeloda would be the next line of treatment that he would have suggested.  His feeling was that my general health is strong, and while all tumor growth is concerning, the growth that was found in my scans last month didn’t represent an ‘oh shit’ discovery and I have the time to pursue the trial and see how it goes.  His position is that it just broadens my ‘medicine cabinet’ and keeps other treatment options open.  

If I receive the control drug (Varlitinib) and there is some type of strong response, the small inconveniences that go along with the trial bureaucracy will be worthwhile.  I have had several people ask how long I will remain on the trial.  The answer is – as long as it is working, assuming I am able to tolerate the side effects.  What does ‘working’ mean?  The definition of ‘working’ may be stabilization.   Of course, my definition of ‘working’ is steady reduction of the new tumors and no new signs of progression until there is no evidence of disease.    You leave the trial if you have disease progression, or if you are unable to tolerate the side effects of the drugs. 

In the meantime, I’m just glad to be in treatment.  It’s an awful feeling to have something growing inside of you and not  doing anything about it for what appears to be an eternity – 3 weeks.  Seriously, those that know me, know my temperament.  Send me an email, I generally respond as it is landing in the inbox.  Drop me a text and I’ll typically respond before you have hit send.  Place a small tumor in my liver and wait 3 weeks to start trying to attack it?  Are you kidding me?   

I’m 15 doses into this treatment process.  It takes some adjustment.  I have to take the pills twice a day, take them shortly after eating something, and take them around the same time of day – within reason.  I have to log each dose.  This is on top of the other various things that I’m trying to do every day to support my health during treatment.  A growing list of basic, daily tasks that either promote wellness or potentially stave off side effects.   For the most part, I still feel great.  I’ve had some subtle queasiness and experienced a very slight energy drop.  Of course, my mind is also expecting side effects, so hard for me to differentiate between psychosomatic issues and real side effects.  Regardless, there is no question that I feel a little different.  The side effects of the drugs are cumulative, the hope is that I am able to tolerate the side effects.  So far so good.

So we all know that cancer sucks.  Treatment sucks.  Having cancer and not being able to have treatment – that would really, really suck.  So regardless of the inconvenience’s, the gradual onset of the side effects, make no mistake, I feel very, very fortunate to have treatment options and to feel pretty damn good.  Whatever shortfall I have in terms of the way I feel is the chemo, it’s not the cancer.  There is a huge difference in outlook between feeling ‘yuck’ because of chemo than feeling sick from disease.  

I have run into so many people in the last several weeks that share their prayers and good wishes.  Your prayers along with the text messages, emails, phone calls – all very much appreciated and make a huge difference!

Thanks for all your support!  Mike. #cancersucks #ShaneStrong