From Gut Punches to Gut Wrenching….

Since I last posted, life has been interesting, challenging and frustrating. First, I came down with what we believe was the flu. That on top of the chemo turned me into a crazy mess real quick. Worse yet though, Felice came down with it as well. Thankfully, Jordan was already heading home to visit for the weekend – he just didn’t expect to spend it as nurse. Fortunately, both Felice and I recovered in time to come down to Houston. Tuesday turned out to be quite an adventure. My blood sugar spiked, likely due to the steroids that I take to prevent allergic reaction to the scans. It required that I drink a ton of water and walk and eliminate in attempts to get the sugar levels below their minimum threshold that they could inject me with the dying agent. Finally by 2:30 p.m. (reported at 7:30 a.m.), I was able to begin the prep for my scans and wrapped up around 5:00 p.m. I had not been able to eat since the evening before, so it was straight to dinner. After dinner, one of my fellow Cholangiocarcinoma patients, Jack, dropped by our hotel for a quick visit. We met on Facebook, then at the Cholangiocarcinoma conference. He’s in town for three weeks of radiation. He knew I had a long day, and we spent some time just talking from a point of view that only those of us dealing with this crazy disease can relate to. We talked about how hard it is to adjust to a new normal, when that ‘new normal’ is so far from the normal we once knew just a short time ago. The wear and tear and the toll that it takes on our families, and how difficult it is for our caring friends and family to grasp the magnitude of what we are going through. It was a great opening of our hearts and souls to one another and came at a great time for both of us. Thank you Jack!

Fellow Cholangio Warrior – Jack!

I met with Dr. Wolff this morning and the results are mixed. I had some continued shrinkage of the spot on my bone and the lymph node. There was some small growth of a couple of my Liver lesions and a couple new very small nodes are presenting in my left lung. The Doc said that cancer cells are a lot like kids. No two kids are exactly alike, some respond to direction and some don’t, others rebel. The current protocol has some of the tumors responding, while showing signs of rebellion with other tumors. Dr. Wolff isn’t ready to make a treatment recommendation. He held me at the hospital for a few hours and had me do some more tests. Our Chemo options are narrowing, so we’re looking at trials, possible immunotherapy trials, possible radiation, targeted therapy, no immediate firm answer. For now, I’m on hold with any further treatments.

It’s quite frustrating, unsettling and scary. Dr. Wolff says it ‘isn’t time to sweat’, but we need to find a treatment path. I’m confident that he will, but in the meantime, I have little to share. The good news is that I feel good. The one thing I know for sure, is that when you’re looking for something that has been misplaced, the place that we find it is the last place we look. I’ve lost my health and have been looking for it, I have lots of people looking for it. We’re probably going to find it in the last place we look.

I’ll be back in touch when I have more to share. In the meantime, thanks for all the continued emails and text messages.

Love Mike, #cancersucks #ShaneStrong

Gut Punches…Outlier…ScanXiety

Gut punches.  I suppose a series of gut punches is a better description.  For those that are used to me being on the upbeat side, this post may catch you a bit off guard.   Cycle 7 was pretty good.  While I had more fatigue than I have experienced in the past, I believe I only had one day that was a ‘wash out’.  I did become anemic during this cycle.  I noticed a couple weeks ago that as I was walking a short distance from a parking lot and became really short of breath.  That’s been my sign that I need blood.  I went in the next day and my red cell counts and platelets were low, so I received the transfusion.  That addressed the red cell deficiency, but my body needs to replenish my platelets.  I went in last Monday to begin cycle 8 and my platelets were too low to have treatment.  Bummer.   Low blood counts frequently create treatment delays for chemo treatments.  We had planned to follow the Flyers to Brooklyn for the A-10 tournament this coming weekend before heading to Houston for scans.  The delay in receiving treatment, puts this weekend in the eye of my side effects.  Cancer thinks plans are ‘cute’ and typically appears to totally ignore them.  

I have had a number of people ask – what do you do about getting your platelet levels up?  The answer is wait until the levels go up.  Yesterday, my platelets were on the borderline of treatable, but with a slight dose reduction, I received the green light to get my toxins!  

The mental game has been the challenge this past week.  As some are aware, I participate in the Cholangiocarcinoma Warrior group for patients on Facebook.  It’s a great source of hope, information, inspiration, resources and experiences coming from people that are dealing with the same disease.  The downside is that we hear of the disappointments, the frustrations, disease progression, and people passing away.   There are times when I can feel the heartache of what people are going through. Chemo induced frailty of my emotions, combined with just being human takes over.  Last week, I learned that a couple of the warriors that we met at the conference passed away. Gut punches.  I’ve really been working to re-center and focus on the positive outlook that is vital to living in the moment and living the vision I set forth in my Mantra last year when I was diagnosed (see post that includes Mantra  –    Cancer is full of gut punches, so I figure I need to deflect those punches a little better, and counter punch a little harder.  Either way, this dialogue is why there are therapists :-).  See you Thursday Ray!

The life that Felice and I once knew has been totally replaced and we both have to adjust to the  constantly changing version of our ‘new normal’.   My attitude, my moods, the ups and downs, all present an even more constantly changing version of the ‘new normal’ for Felice.  I expect as much as she is unable to fully understand what I am going through, I am unable to fully understand what she is going through.  I can tell you with no uncertainty that the emotional roller coaster that I am on is no smooth ride.  Her strength brings me strength!    Fortunately, we are blessed to have each other, our family, and such an incredible support system with friends and family continuously providing us with love, friendship, prayers and making sure that we are staying busy , all while tolerating my smart ass humor!   There are also a number of people that are less prepared to deal with our situation.  For those of you that are concerned that being around me is uncomfortable,  I try hard to let others lead the direction of the dialogue and  talk about what they are comfortable talking about.  There are a lot of people that just want to kind of glean over the ‘C word’ topic, quickly moving the dialogue to something else.   I respect that and understand that – it’s not a pleasant topic.  TRUTH#7 – Life isn’t always about pleasant topics, but I appreciate that everybody has a different way of figuring how to deal with unpleasant topics.   

Here’s my tip for what to say when seeing somebody that is dealing with an uncomfortable situation.  ‘It’s great to see you’ – pretty straight forward, can apply to a lot of circumstances.  Anything beyond that is purely optional.  There really is no question that is off-limits.   I’ve had people that ask what my prognosis is.   I understand, people read this blog or see me and don’t quite know what is up with me.   Am I healthy because I feel good?  No, I have an advanced stage cancer.  So, does that mean you’re dying?  Yes, NEWSFLASH – so are you!  You don’t know when, I don’t know when.  We’ll all find that out when the time comes.  I also believe that all of us would prefer more time here before we pass. This is human nature.  We all get to face our mortality at some point.  I haven’t met anyone that wants to die, nor do I.  My Doc and I don’t have the ‘when’ conversation.  He doesn’t deal too much in trying to anticipate what lies ahead.  What’s the purpose anyway?  We agreed early on that he would let me know when he felt I was heading towards a slippery slope.  Otherwise, any futuristic questions that I may be tempted to ask would likely receive the response, ‘Something will happen’.  He made it clear from the start that he is relatively certain that this cancer will end up taking my life.  What lies between what is and what will be have endless possibilities.  It’s up to me to believe that I am an outlier.  

TRUTH #8: I am an outlier – for real.  To start, I was a surprise (aka – accident) pregnancy.  I didn’t know until I was 40 years old :-).  I may have never found out if my sister hadn’t blurted it out at my 40th birthday party.  I acknowledge that while I may have been naive not to figure out that I was a ‘surprise’, the fact that I didn’t know until I was 40, suggests that I never felt like a ‘surprise’.  I am an outlier.  

When I was about 5 years old, I went to my dad’s plant for a holiday party.  One of the things they manufactured were painters overalls – with the big brass buttons to hook the overall straps to the bib.  I took a bunch of those big brass buttons home and decided that I should eat some.  I stopped breathing.  My mom grabbed me by my legs and ran with me upside down to our neighbors house, who happened to be my doctor.  He also happened to be home at the time.  I still remember them laying me on the table, doc with a knife in hand, getting ready to do a tracheotomy.  I was so shocked that I vomited and gagged and the buttons came flying out!  The beginning of the term ‘Mikey eats anything’.  I am an outlier.  

When I was 16, I was a passenger in a car. My friend who was driving, attempted to pass a semi on a two lane country highway in Wisconsin, in a no passing zone.  Up over the hill was another semi coming at us full steam, head on, as we were half past the truck we were attempting to pass.  I remember the horn from one or both of the trucks and the next thing I recall was getting helped out of the car that had ended up in a ditch.  Not a scratch on anybody or any of the vehicles.  Huge skid marks and a well deserved ticket for my friend.  I’m an outlier.

I helped form a business partnership that lasted for 30 years, starting with $ 1,000 each.  I was part of a great business, with a great team and a great culture and was able to successfully sell the business.  I was blessed to have some totally awesome experiences with some totally awesome partners, adversaries and team members along the way.  I’m an outlier.  

Hell, I even got diagnosed with a really rare form of cancer.  I’m a F#^king outlier!

I met the love of my life, followed her to Dayton, married her, had three wonderful kids, add a great son-in-law. Of course, Sid, our almost 2 year old granddaughter trumps all!  We love every minute with her and can’t wait for GB2’s arrival in late May.  I’m also an over achiever 🙂!

The next few weeks bring March Madness, The Masters and Sid’s 2nd Birthday!   Next week brings scans!  I am definitely full of ScanXiety!   There really is no way to avoid it.  As I approach scans next week, I would be lying if I suggested that I am not nervous.   If I have any ache, or flash of pain, my mind plays games and tells me – ‘Dude, that’s cancer growing’.  It’s totally irrational, non-logical and almost senseless.  I work on convincing myself that whatever the outcome is, is what the outcome is.  Another voice says ‘Dude, you’ve been feeling good.  Your blood work is good, we’re going to get a good report’.  It reminds me of a scene from Animal House, except the topic isn’t cancer.  The scene involves Pinto, the mayor’s daughter, the devil and the angel.    If you don’t know it and are interested, go to the YouTube link below!  Warning, some may find the content offensive and disturbing, adult situations, sexual content and a lot of other stuff that would not be classified as appropriate for any viewing audience!  You will be required to confirm that you’re old enough to be viewing.  (

This is the roller coaster – it will go up, it will go down.  The roller coaster will twist and turn and maybe even turn one upside down.  It will create fear, excitement and adrenaline.  The roller coaster almost always includes the unexpected.  I got pushed on to this damn roller coaster.  I’m Definitely not a fan of roller coasters. As far as I’m concerned; the roller coaster and cancer are intertwined – and ScanXiety is a fact of the disease.

Word out of Maryland is that Megan is recovering from her hip surgery.  Lots of rehab involved –  Megan is a total Bionic BadAss!

Thanks to all for your continued support – the prayers, the texts, the emails – they really all mean a lot to me and my family!

Love, Mike. #cancersucks #ShaneStrong #Meganisabadass #curecc