Month: August 2018

Yes, it is my birthday today.  I am 58 and feeling great!  While I haven’t always been one to celebrate birthdays in a big way, this year it’s different.  Felice and I were talking at lunch today.  I’m pretty sure we both believed that I would be around  for this birthday, but neither of us had any dream or vision that I would feel this good, so while every day is a special day, and every birthday is special – this one has a different feel than any I can recall.  But the celebration is more a sense of renewed excitement about tomorrow.  The one gift which I cherish, is of course the one that can’t be bought – good health.  I am happy to share that all of labs were ‘perfectly normal’ and my cancer marker dropped from 3 weeks ago!  I am now waiting to confirm when I get to go to Houston next and have scans.  The labs are a critical factor, the marker movement is positive, but having scans will give us a much better picture of where I’m at.

While I celebrate being 58 and feeling great, I can’t dismiss how fortunate I’ve been to find myself in this position, so I have some birthday wishes for all of you.

#1 – If you aren’t in a habit of having regular checkups, pick up the phone tomorrow and schedule one.

#2 – Have your blood work done regularly, monitor it, ask questions when anything is not normal.

#3 – Create a ‘hit by a bus plan’.  It’s the one thing that created great angst for me immediately when I was diagnosed.  I’m a reasonably organized person, but I hold the keys to a lot of information that would create a lot of anxiety for Felice and my family if I were hit by a bus.  Most people probably have their legal estate docs in place, but if you don’t – do it!

Passwords – even if you use a password keeper, does your spouse, significant other or whoever would be dealing with your estate & household matters know how to access it?  If you don’t use a password keeper, consider downloading one from your App Store, get your passwords up to date.

Start creating a log of things that need to be dealt with around the house, who you turn to for those things.  Creating a continuing log for anything that has the potential to be overlooked – tax items, private investments to name a couple.

These are just some of the practical things that everybody needs to have organized, none of us know when that ‘bus’ might cross the median – you get the point!

Of course many of you do all these things above, but if I can encourage someone that isn’t to take some action; it will be a sliver of a silver lining from this surreal nightmare that we have been living through.  My most important wish for you is to celebrate today – every day is a special day, don’t wait for a birthday to celebrate.  When you live with a cloud in the background, you realize that so many of the things that people get caught up in are just not important.  Today matters.  Yesterday is in the rear view and doesn’t matter anymore and tomorrow is not guaranteed.  Take the trip.  Worry less.  Don’t waste time on things that you just don’t give a shit about, and don’t waste time on the things you can’t control.   

And do as I did today – Eat the cake :-).  

Thanks to all of you that wished me a happy birthday today through your phone calls, text messages, facebook posts, and emails.  I truly appreciate and thrive from all the positivity that comes from you all!

Mike. #ShaneStrong. #cancersucks

 

 

Did we just “catch a break”?!? 😀

That’s the text that I received just minutes after I updated my Caring Bridge page a few weeks ago.  It was from my good friend, college fraternity brother, turned 30 year business partner, Geoff Hyman.

Geoff had read my Caring Bridge post, where I shared that I had received some really great and surprising news, arising during my recent visit to MD Anderson.  (You can see the complete Caring Bridge update at:  https://www.caringbridge.org/visit/mikeshane2 )

Geoff’s text caught me off guard.  I responded – “I think so…”

It’s from my ‘Mantra’,  which I posted on my Caring Bridge site back in May (in photo  below).  I wrote my Mantra in the days following my diagnosis.  It was my way of organizing my runaway emotions, accepting my situation and creating a framework for how I intended to maneuver through the challenge.  This is the excerpt from my Mantra that Geoff was referring to:  “I’m going to trust in the medical process and be infinitely resolved  that I will catch a break through my treatment process.”

As I mentioned, the news we heard that day caught both Felice & I by surprise.  It’s taken the last couple weeks to absorb.  The ‘phenomenon’ my Doctor said I was the beneficiary of is called ‘The Abscopal Effect’.  It is a freakishly rare biological effect that can occur when undergoing radiation therapy.  In my case, the radiation appears to have done it’s work on the target, which was the very large mass on my liver and the abscopal response enabled my immune system to go fight the active lymph nodes.  From the radiologist report, all of the remote activity appears to have been ‘resolved’.

‘The Abscopal Effect’ can’t be ‘created’ on purpose.  The occurrences are so rare that it is difficult to locate those that have had it happen to them.  A recent article published by the National Institute of Health stated that between 1969 and 2014 there have been 46 reported cases.  I was blown away by that.  I expect there are a lot of unreported cases, but regardless, 46 reported cases in 45 years.   That’s rare.   There are an increasing number of trials to prove the principle that combining immunotherapy and radiation therapy can create an abscopal response.   Wikipedia uses the term ‘phenomenon’ in defining ‘The Abscopal Effect’ – when it happens to you, it’s a MIRACLE!

For now, it’s a waiting game.  I’ll have blood work this coming week.  Those results may or may not give us an indication as to whether I experienced (or continue to experience) a limited or robust abscopal response, at the least it will be a data point.  Then we’ll go back to Houston for scans – most likely right after labor day.  These scans should give us much more information.

Everybody says that cancer is one continuous roller coaster.  We got shoved on to the roller coaster back in January and hit some lows pretty quickly, but now the coaster shot straight up.  Obviously, I’d love to ride on up to the next level for a while.  I can’t try and prepare or anticipate for a drop, I’m not wired that way.  If or when the coaster drops, I’ll deal with that then.  Felice prefers to wait on the sideline so that we can go ride on the comfy train together.   I’m jumping on the coaster.  It feels too good to dream of miraculous outcomes and have a vision of life without the shackles of perpetual treatment.  While I feel this good and am able to be fully active again, full of energy; I want to take it all in and enjoy the feeling of being healthy again.

I have frequently visualized feeling healthy again, but not this quickly, so I’m just riding the coaster!  Just a few weeks ago, we were preparing to enter a clinical trial that had the potential of creating a lot of unpleasant side effects, without any sense for whether it would work, or how long I would be in treatment.  Today, I’m playing golf, taking walks, exercising and doing things with more energy and excitement than I could have imagined at this time. Felice and I use the word ‘bonus time’ any time we have had the kids home for any extended period.  Now ‘bonus time’ has a new meaning to me.  While I’ll be very disappointed if this ‘bonus time’ is brief, it’s still bonus time.  It’s a reprieve that few, with my diagnosis have the opportunity to experience, it’s bonus time that I am blessed to be experiencing.  For me, it’s a miracle…I don’t know what tomorrow brings, none of us do.  I do know what it is like to lose your health, suddenly without warning.   I know what it is like to face the fear that uncertainty brings, and I know what it is like to scurry to get things organized so that Felice and the family could manage our affairs if I ‘got hit by a bus’. 

So yes I have an appreciation for what I once took for granted.   Felice recently said, ‘I just don’t know how you’re at peace with all this’, referring to my overall sense & belief that my health is good.  I told her that I understand, this has all just happened so fast,  but I just have a feeling.  Back in January, when my Doctor wanted to have me take more tests, I knew that there was something serious going and on.  I just knew it.  I hoped that I was wrong, but as the days passed, I knew.   It’s the same way I feel now, I know things are going to be alright – at least for a while.  That’s a hell of a lot better than where I was, so I have an inner calm about getting  ‘bonus time’, no matter how long.

I now also know the power of all of the positivity that so many of you share.  I know the power of your prayers and I have been given a new view of how wonderful people are.  We have seen the true goodness in people.  Friends have come out of the woodwork to support both Felice and I in the kindest of ways.  It has shown us both a new vision of what it means to ‘be there’ for those in need.  We continue to be so appreciative of all that you do and the genuine way that so many of you have wrapped your arms around us in hopes of providing us comfort.

So yes Geoff, we just caught a break!

Mike #ShaneStrong. # CancerSucks