It’s been a year now since we learned that I had a mass on my liver.At this time last year, my formal diagnosis still was pending, but we knew I had a serious challenge.We’ve been through a lot of ups and downs.We’ve been through disappointment, despair, denial, fear and a hosts of other emotions in confronting my disease.We’ve had so many people embrace us and our situation with such amazing support, wonderful acts of kindness, giving us faith that humanity and compassion still exist!Those of you that still take the time to email, text, call, attempt to reach out to get together with Felice or I – you all make every day a little bit better for us.
Cycle 6 went pretty well.Each cycle presents slightly different nuances that we need to learn how to manage, but I am generally pleased with the way that I am handling this protocol thus far.I felt spectacular for the 2nd week of the cycle and really made the most of those feel good days.
If you’ve been following, you notice that I have changed the format a little.There are so many personal moments that highlight the fact that I am able to be active and live life while going through this journey.I want to share some of those moments, but don’t necessarily want to make them the central theme of what I am writing.
Every day, every treatment cycle slightly alters my perspective on living with this disease.Right now, generally I feel really good.I’m almost to the mid point of cycle 7, and feel a little ‘yuck’ today, but no room for complaints. I have far more good days than bad. In fact, I have very few days that I really refer to as ‘bad’.I hesitate to get too excited about how good I feel.It’s a great sign that I feel so good, that my liver enzymes and all of my critical blood levels are normal or near normal, and that I am handling the protocol well.All of these things are positive indicators, but these positive indicators can change quickly.I’ve learned that I just need to enjoy the good days and as you’ll see in the new ‘Quick Hits Gallery’, I try to take advantage of the good days.
There are a lot of data points that my oncologists use to determine how I’m doing.
#1 – How do I look?How’s my skin look, do I appear ‘healthy’.The consensus answer as of last several weeks is that I’m looking good.
#2 – How do I feel?Am I experiencing abdominal discomfort?Do I have discomfort in my liver or any other aches and pains?I’m getting really good at listening to my body for pain. I have not had any pain for at least a couple of months, aside from the aches that chemo can introduce for a couple of days.No pain – pretty encouraging!
#3 – How am I sleeping?I sleep really well – aided by CBD oil, which I am a huge fan of.
#4 – What about those bowels?I continue to improve the management of my GI tract and that is making a huge difference in how I feel!
#5 – How am I managing side effects? I continue to tolerate the other side effects really well.Fatigue is unavoidable, so I try to do the best I can to anticipate what days I’m likely to experience fatigue and make sure not to make any commitments for those days.
#6 – How are the labs?Watching the red and white cell counts before each treatment tells the story of toxicity levels.I take Neulasta with each cycle to help keep my white cell counts strong.They watch the red cells and the platelets closely.I’ve had 2 blood infusions so far and those bolster the red cells.Platelets have to reproduce naturally.With the exception of delaying cycle 2, I haven’t yet run into a delay of receiving treatment due to counts but that possibility always exists.As I referenced above, my other labs have been steady and stable.
#7 – How are my cancer markers?They don’t run the markers every cycle, in fact, they typically only run the markers when I do a full work up at MDA.We bench marked my markers here, because not every lab has the same exact results.If I were experiencing issues with items 1-6 above, they would likely go ahead and run my markers.Otherwise, we wait.Last time I had my primary marker taken, it was in the normal range.
#8 – The all important scans.This is where the rubber meets the road.The scans are the story.They show the big picture, the trends on how tumors are responding to treatment.They show progression, they show new activity, they show shrinkage.The scans are the single event that cause great anxiety to any cancer patient.
Currently, I am scoring really well on these various health check factors, but I have another month before I get to Houston for scans.It is the toughest mental challenge I am currently dealing with.I felt really good after cycle 4 of the protocol that I was going through last spring.I was absolutely certain that I was responding well to that protocol.The fact was that my liver mass was responding to the protocol, but there was metastatic activity appeared to be on the rise. The Doctor felt that we needed to move away from that protocol.So I’ve had to adjust to the fact that I can’t assume that this protocol is continuing to work – it’s a scan to scan process.That won’t go away either. All of the patients that I have talked with about this – even if they have been stable or NED (No Evidence of Disease) experience varying levels of ‘ScanXiety’.
I was disappointed to recently learn that the tissue that was biopsied from my Liver in December did not have enough RNA in the specimens to run the genomic tests, so I am no closer to finding out if I have actionable genomic mutations that might be treatable with Immunotherapy.It’s a frustration, but the team is going to discuss alternatives to conducting the genomic profiling when I go for scans next month. I don’t know enough about RNA to really dive into the details.What I do know is that there are a lot of immunotherapy therapies emerging, both currently in use and a pipeline of trials involving various immunotherapy options.
Meanwhile, in Baltimore, Megan earned a new moniker this week – Megan is now a ‘Bionic Bad Ass’!She received a new hip and is looking forward to recovering from that surgery and returning to more normal activity levels.Her strength and attitude are incredible.I wish her a speedy recovery and continued stable reports and general wellness!Please keep Megan in your prayers.
The last year has certainly been a year that changed our lives forever. Felice and I were talking the other day.Neither of us had any expectation last year at this time that I would feel as good as I do at this time. I feel so fortunate to be able to experience ‘feeling good’.I work really hard to maintain a good attitude, realizing that I can only control the things that I can control.Still, not a day goes by where I don’t want more.I desperately want to be here to watch my family continue to grow and thrive.I want to share in their lives.I want to grow old with Felice.I suppose these are the things that we all want.That’s what I visualize, that’s what I fight for, that’s what I dream about.A year ago, my view was less hopeful, we weren’t given much hope when diagnosed.Today I have hope.Today I still dream of a future.Today I believe that anything is possible.My strength, my conviction of purpose, my resolve is fueled in part from all of the support that you all provide.
I can’t express often enough how much Felice and I appreciate you being part of our lives.
Thanks to all – I’ll be back in touch.In the meantime, Be Well!
It has been a few weeks since I have posted here.It’s been a pretty busy time. I went through cycle 5 almost three weeks ago.We scheduled an extra ‘off’ week so that we could do a little travel.I handled cycle 5 pretty well, although I ‘veered out of my GI Lane’ and created a day or so of relatively minor discomfort.Compared to my prior cycles, there was a lot of improvement in managing the side effects.I did become anemic and needed a blood transfusion before we left town.Blood transfusions are awesome when you are anemic.It’s like giving a wilting flower water in a desert.The response begins almost immediately and after 24 hours, I felt like a new person.No more fatigue, no more shortness of breath, high energy – it has been an awesome 12 days of feeling pretty damn normal, not to mention ‘looking good’ or I suppose ‘looking as good as I am able to look’ :-). It’s impossible for me to express how incredible it is to feel normal, even if just for a brief time.Prior to that blood transfusion, walking just a couple hundred yards wore me out.
It has yet to cease to amaze me that prior to my diagnosis, how much I’ve taken these basic things for granted.I was exchanging text messages with a good friend that was golfing.He lamented over his golf game.He wrote ‘I hate golf.’It’s fair, golf is tough, but in that particular moment my mind when in a different direction.I responded ‘golf is great.You love golf.We all suck at the game, its the best game around.My hope is to be able to play this spring, so you better appreciate everyday you get to play…appreciate even the bad shots!’It’s reflective of the way I feel about these little things these days.
Fully charged with fresh blood and a diminished presence of toxins in my system, Felice and I took off, beginning our trip with a long weekend in San Diego.We met up with our friends, Connie & Dicky Sherman for dinner.Dicky had been a long time member of our poker game.We also spent an evening with Felice’s Uncle Milt and Aunt Renee, along with her cousins and their husbands.We really enjoyed seeing friends and family!
We walked along the shores of La Jolla, spent time just hanging at the pool, went to the zoo and other tourist attractions.I mentioned above the difficulty I had walking before the transfusion.Every day in San Diego, we walked quite a bit, one day, approximately 15,000 steps.It was great!We had some great meals along with some awesome weather.Nothing like sunshine, an ocean and temps in the 70’s to heal the soul.
Unfortunately, time went too quickly and the time to leave La Jolla, (aka paradise) for Salt Lake City for the Cholangiocarcinoma Conference came too damn soon.
Mike, Felice, Dicky & Connie Sherman
Cousins from left – Sonia, Dave (standing), Andrea, Paul, Mike, Felice, Uncle Milt & Aunt Renee (standing)
C-H-O-L-A-N-G-I-O-C-A-R-C-I-N-O-M-A – A year ago, I had never heard the term, nor would I have expected that we would be attending a conference dedicated solely to the topic!At this time last year, I was deep into the diagnostic process.As you might recall if you have been following for a while, my diagnostic process began with what we believed was a fairly benign symptom – the calcium on my blood work for my routine physical was elevated.A very high percentage of the time the cause of elevated calcium has something to do with the parathyroid gland and is generally easily addressed.In fact, my team at MD Anderson is still suspicious that the high calcium level may have been no more than a red herring and that the discovery of my cancer was likely an accident.Regardless, I will never forget that agonizing time period leading up my diagnosis on February 20th.It was almost two months of hell.The total sense of helplessness, despair, mixed with confusion about how to move forward were overwhelming.The diagnosing oncologist offered little in the way of hope and I was freaking out about ‘getting my affairs in order’. In almost a manic style, I began putting together instruction manuals for Felice for every app that controls something in our house.I turned over bill paying responsibilities, assured that all of my important passwords were in a secure, shared location and have tried to document anything that I thought might create anxiety for her if I were to be ‘hit by a bus’, that I could think of.From time to time I like to use this blog to remind everyone reading that the best time to take care of these simple, yet important details, is when you are well.None of us know when that proverbial bus is going to hit us.In fact, most people don’t even acknowledge that it is even a possibility that a bus has the potential to hit them.A very important thing that we can do for our loved ones is to try and eliminate as many potential stress points as possible in the event that the bus comes charging our way. Organizing these things that might cause Felice stress enables me to have peace while entering the unchartered waters that I have found myself in.
The Cholangiocarcinoma (CC) Conference is quite unique.It’s one of the few medical conferences where patients, care givers, medical professionals and industry professionals come together.The Cholangiocarcinoma Foundation (CCF) was started about 15 years ago by Stacie Lindsey in response to the diagnosis and eventual passing of her brother, Mark Clements.Stacie, her family, a small staff (many of whom are living with CC) along with a passionate army of volunteers, have built the foundation for the patients.They provide research grants to a variety of researchers, advocate for patients, help patients identify providers, provides a mentorship program and organizes the annual conference amongst other things.I was really impressed with the CCF and their team.The first day of the conference is dedicated entirely to the patients and the care givers.I had no idea what to expect.We arrived at our hotel the evening before, just in time to get over to the convention center for the meet and greet and dinner.Our name badges identified us as patients or caregivers. Almost immediately, I start meeting people that I have communicated with in the private Facebook group for patients.Patients share stories about their treatments with one another, care givers start talking to other care givers.There were a lot of great interactions going on.There were about 150 patients and caregivers attending.Four years ago at the first conference, there were approximately 50 total people in attendance.This year, there were 480 total registered to attend. It is streamed live for patients and caregivers that are unable to attend.Scholarships for trawl and lodging are available, the conference is free for the patient with a nominal fee for the care giver with all meals provided.It is truly an organization that is working passionately on behalf of the patient.
While none of our diseases are exactly the same, the people I met are all experiencing the same general situations.We all have fear, we all have anxiety, we all understand the difficulties our disease presents.In addition to being here to mingle with one another and share our various treatment paths; those of us in active treatment or with active disease are yearning to hear about something that will provide us an edge in achieving the longevity of those that have either become disease free or are fortunate to be able to manage their disease in a similar fashion to other chronic diseases.During a morning breakfast session, we each stood and told of our particular journey.The stories were inspiring and heart breaking.A young woman, appearing to be in her early 30’s, was there and had just been diagnosed the previous day.She happens to live in the Salt Lake area and immediately learned of the conference and attended.I recall how devastated we were when I was first diagnosed.I marveled at the strength that this woman showed.There were people that are ‘NED’ (No evidence of disease).There were people that have beaten the odds and been cancer free for years – 14 years, 10 years, 9 years, and others, also beating the odds, that have been ‘managing’ their disease for years – having periods of time of being stable, followed by treatment.Many of these people come to the conference to provide others with hope.There are several people that attended the conference who have lost loved ones to CC and want to be there to provide support to others confronting the challenges of the disease.There are stories of strength and so many stories that were inspiring.There are stories where the frustration of the current situations of some patients was evident.It’s a tough disease and everybody goes through tough times.The common theme from this group is a theme of hope.Everybody I talked to, regardless of their current condition, had great attitudes.
On day 2 and 3, we heard from the leading specialist, from the leading cancer centers.Hearing the researchers talk was a bit overwhelming.The data, while showing areas of improvement and promise for accelerated improvement; can be a little frustrating for current patients to hear.This isn’t news to any of us.We’ve all known that longevity flies in the face of the statistics.Everybody here wants to be healthy, everybody here wants to be cured, everybody here wants to be NED.The data reminds us that while statistics might not lean our direction, he statistics include people that fall on the positive side of those statistics and I plan on doing that! I have nothing better to do right now then try to be an outlier and beat the stats.I’m encouraged by all the research that is going on.The numbers can’t get better if research and trials aren’t happening and there are a lot of trials going on.The trick is finding the right one at the right time. It’s not a linear process. So while there wasn’t a particular ‘break through’ moment at this conference, but both Felice and I left with more knowledge.
For those that have been following for a while, here’s an update on Megan.She had positive results from her last report and is now looking forward to a new hip later this month.She is off treatment and feeling good.Megan’s ‘BadAss’ attitude definitely has paid off and helped her endure 7 challenging weeks in the ICU.Her determination, perseverance and positive attitude, with some true grit mixed in; are amongst the reasons that she earns the ‘BadAss’ nickname and is a source of great inspiration for me.The new hip will give her a lot of relief.Please keep Megan in your prayers.
While I am really excited to be able to have treatment, there is no question that there is a part of me that feels like my winter break from school is coming to end and I’m heading back for a really tough schedule. I need to get back in fighter mode by tomorrow morning and prepare to kill those bastard terrorists that are hanging out, primarily in my liver.These are the tough moments, the moments that many of the people I met this week have been dealing with for years.Honestly, I pray I get to deal with these feelings for years as well.It is really easy to minimize the weight that treatments cause, but the over-arching logic is pretty simple.If treatment gives me the potential for periods of varying lengths of good quality of life, then buck up dude, treatment it is!One of the patient speakers, who also blogs, spoke of how people are inspired by his bravery. I’ve tried to say this before, but have never found the right words – Matt Decample did (https://decample.tumblr.com) He said ‘it’s not bravery, I’m selfish, I want to stick around.’Well said Matt – Ditto!
As always, I am thankful to have so many of you providing encouragement.Please keep the text messages, phone calls, and emails coming – they provide more comfort than you can imagine.
It’s been some time since I last posted. As with most of you, it was a busy holiday season filled with lots of fun, family and friends. The last time I wrote was right after a spirited card game.I started Cycle 3 that following Monday, December 17th.My red cell counts were really low, it was a borderline call to get treatment or defer for a few days.Deferring the treatment would disrupt our plans to go to Naples.After discussing our trip, the Doc decided to do the treatment and do a blood transfusion when I come back to complete my three day treatment on Wednesday. I’ve become very comfortable going out and about with my chemo shoulder bag. I get a few looks, but I think that’s fair. There’s an IV line running from the backpack, up my shirt, into my port.
Jordan came home on Monday also.He was in the middle of 4 weeks of ‘fun-employment’.He accepted a job with UBER Freight,and had turned in his notice giving him a month of freedom.So he decided to come spend a couple of weeks at home.
On Tuesday, we had a visit from my former college buddy, turned long time associate, and very long time friend, Dave Moise.Dave and his family live in China. He came back to the U.S. for a couple weeks to visit his family, friends and customers and scheduled a visit here in Dayton.This created the opportunity for me to gather a bunch of the team that worked with Dave from Lastar along with one of our fraternity brothers from IU. It was a great afternoon, I tried taking Dave on at ping pong, but Dave beat me with little effort. I’ll be looking for a rematch, sans the chemo bag :-).
Wednesday Jordan and I went to hang out at the treatment facility to get the blood transfusion once my chemo drip finished. I didn’t expect the transfusion to take 5+ hours. We spent most of that time playing backgammon.Getting that blood was awesome.Giving fresh blood to somebody that is anemic has a pretty quick impact, not to mention a huge psychological impact.The shortness of breath that I was experiencing went away. I was having difficulty walking up a flight of steps, so this transfusion helped a lot. My energy level improved quickly.
Thursday we took off for Naples.When we landed there, it was monsoon type rain.We got to the house and were happy to find that the house was exactly as we expected and a perfect fit for our family. There were no major activities planned, nothing to create stress. An opportunity for us to be able to be together and hopefully have some decent weather.
Our niece and nephew – Daniel, Pam, Ellison, Oliver and Henry Abromowitz, along with Daniel’s brother, Michael; drove over from the Palm Beach area to spend the day. It was great seeing them and celebrating Ellison’s birthday.
On Sunday, Susan and Nat Ritter drove in from their home in Bonita Springs for a visit..It was great to finally get a chance to meet Susan.It was great spending a couple hours chatting, enhanced by beingpool-side, in 70 degree sunshiny skies.The kids, all patients of Nat, enjoyed seeing Dr. Nat again and meeting Susan as well.
Later on Sunday, I really started not feeling so great.We were getting ready to head down what would turn out to be three days of un-chartered waters with my chemo side effects.I found new levels of GI discomfort.I had clearly fallen behind on my preventative efforts and was starting to swerve out of my ‘Gastro Lane’. Dr. Wolff and his Fellow, Dr. Williams have given me an arsenal of tools and the order in which to use them, depending on what side of the GI line I’m varying from – constipation or diarrhea.There is no specific protocol.Dr. Wolff starts this speech off the same way almost every appointment.‘Look, these are your bowels.You have to find the formula that works for you.You need to find a way tokeep your bowels in one lane.’Great speech Doc, I hear you.At the same time, I am pretty certain that the anti-nausea drugs they give me intravenously when we start a cycle are akin to pouring quick drying concrete into my intestines.I am a great experiential learner – hit me once with a 2×4 and I usually understand not to do whatever caused that to happen :-).My learning curve for managing my GI matters has been slower, in great part due to not wanting to veer out of my lane.I struggled Sunday through Wednesday to get myself back into my lane.There were lots of good times bundled in with a lot of discomfort highlighted by what I describe as the hellish intersection where constipation and diarrhea duel it out through my intestines, creating spastic gastro discomfort.The pinnacle of these disrupted days came on Tuesday night.It was Christmas, and Thai was for dinner.I was not really able to think much about eating Thai.I sampled an item or two, I was gradually coming out from underneath this gastric nightmare, but not ready to commit to eating food.Jordan and Felice announced that I needed to get out and move around – get a walk, they said we’re all walking over to the Gelato place.I said ‘Hell yeah, now we’re talking.Gelato was something that sounded really good.Felice didn’t miss a frickin’ beat – ‘No Gelato for you’ – almost as if it was straight out of a Seinfeld episode.I said, ‘are you kidding me? Something finally sounds good and you say ‘no’, I mean you can’t ask a guy like me to walk to a Gelato place and not get Gelato.’Cancer can’t keep a Shane away from Gelato.Seriously!She said ‘no, you haven’t really eaten in three days – gelato is not going to happen.’ So while cancer might not keep me away from Gelato – looks like Felice is able to! Of course, she was right, but it was a pretty deflating moment.I did the walk – it was a walk of shame, dismissed to a bench outside the Gelato store with my daughter’s dog – Nika.I did get a couple warm greetings from what I assume may have been elderly widows, admiring Nika.So I found out where the hot widows hang out!
The trip ended up being awesome overall. My situation disrupted things more than I would have cared for, but the kids and Felice all managed to have a great time. Along with the house being a great fit,it had an awesome pool and was just feet away from the couch that I would often nap on with a wall of windows so I could see what was going on.I was out by the pool a lot – in the shade playing backgammon with one of the kids and watching Sid play in the pool and hot tub.All of the laughter that was created with Sid, all of the backgammon, the outings that I went on, the movies watched, the time together far outweighed the discomfort. We were able to do a beach walk or two, took the golf cart on a couple of tours of all of the awesome estates that line the Naples beach.
Jumping forward to New Year’s Eve Day and what better thing to do than go get chemo to usher in the New Year.This time my white counts were low.Low enough that it was borderline whether to treat or not.Doc agreed to proceed and added Neulasta to the protocol.You’ve likely seen the Neulasta commercials – or fast forwarded through them :-).Jordan wanted to hang in town to be with me at chemo for a while.He put the finishing touches on the total ass-whipping for our Fall Ball backgammon Series.He is the grand champ for now.He took off early in the afternoon to get back to Chicago in time for his New Years Eve plans.It was wonderful for him to take two weeks and hang with us – bonus time!Both Felice and I got a big lift from his visit.He was helpful with things that both of us wanted to get done around the house and we watched a ton of sports.We value all the time that we had with all of the kids over the holidays. Our family definitely has a higher sense of the value of the times that we are together.
I came home from chemo and crashed hard. I woke up and didn’t know if I could stay awake if we went to our friends house for dinner. We decided we would go and stay until I needed to leave. We ended up staying beyond midnight. When it was time for desert there was Gelato – I said ‘Hell Yeah’ I quickly remembered that I had just had chemo and can’t eat or touch anything cold for at least 5 days. No Gelato for me – again! We had a great time with great friends. I couldn’t think of a better way to begin 2019.
Tuesday was the first day of 2019 – January 1st.What do you do on the 1st day of 2019 – go to Jack, a casino located downtown in Cincinnati.Hell yes, there aren’t a lot of things I enjoy more than playing black jack.I guess I shouldn’t be surprised that security wanted to analyze my chemo bag :-). The black jack was fun and I left a winner, so great way to start off the year!
I finished up the cycle on Wednesday and was equipped with my Neulasta device.It basically releases an injection through a patch type device, 27 hours after my chemo is complete.This helps to boost my white blood cell count to strengthen my immune system, reducing the potential for infection.This cycle, Felice was paying particular attention to diet – mine!We agreed that I would try and force myself to eat foods that were better for my digestive system.It’s hard. My taste buds are impacted. I crave foods that are more likely to be disruptive, but after finding out how combative my GI tract is during Cycle 3, we worked hard to manage my diet and keep my bowels in one lane.It is tough, but the combination of change of diet and increased focus on preventative management created a much smoother Cycle 4.I had my sleepy Friday last week, but felt really well during this cycle.In fact, I have felt excellent much of this cycle.There are about 4 days of the cycle that are wild cards with regards to how I might feel. On Saturday, Felice decided that it was time to flip the tables and become the patient. She was drinking her morning tea and made some type of movement that caused her back to spasm and was experiencing that awful, debilitating back pain.She was flat on her back all day Saturday.Fortunately, she improved quickly, as she was concerned she would not be able to travel with me to Houston on Monday.For the record, I did a pretty good job taking care of her, but it can not begin to compare with the care that she provides me.
On the way to Houston, I decided to read a book I had been intending to read for some time. Anschel’s Story, written by Renate Frydman. Renate is the mother of several of our friends. Her book is about her late-husband, Charlie’s story as a holocaust survivor.Felice read it right away when it had been given to us.I haven’t been reading much, and was really hesitant to read a book about the holocaust, more interested in lighter content.I knew Charlie Frydman (Anschel) , the subject of the book for years before he passed away suddenly.I knew he was a survivor of the Holocaust. Wow – I had no idea that I would be so inspired by Anschel’s story. Anschel was just a young boy when forced to jump into survival mode as the German’s began creating havoc in Poland. The story shares the determination that Anschel had to survive.He used instincts, bravery, determination, perseverance on his path to survival; an ordeal that lasted several years. He survived and thrived and eventually made his way to America, and met Renate.They married, and raised a great family, while Charlie went on to build a thriving generational business with his father-in-law, Bert.I learned so much about Charlie’s survival strength that applies to my current circumstances.Renate does an excellent job sharing Anschel’s story.I highly recommend reading it and while it’s a great read for all, I definitely suggest the book to anybody that is facing a life challenge.It’s amazing how much you can learn from a young boy that is confronting insurmountable odds over a period of years – years that consumed his early and mid teens.He would not give up, he was entirely focussed on surviving, he used every possible resource and relied on pure gut and instincts in situations where he had no choice but to believe in the decision he made and commit to that decision.I’m glad to have read his story, and also glad that I knew the man behind the story.
I exchanged text messages a few times with Rocky recently and he shared that Megan was continuing to regain strength. To those of you who are reading for the first time, I’ve shared much of Megan’s story and introduced Rocky in previous posts. Many of the issues that kept her uncomfortable and in the ICU for the better part of 7 weeks have cleared up. She has her scans on Monday and I am praying for her to have positive results. Megan’s strength and courage are a tremendous source of inspiration. She truly is a BadAss. I’m so happy that she has rebounded so strongly and that she and Rocky were able to get away to their favorite vacation spot. Rocky shared the photo below. Does this BadAss woman look like she was in the ICU for 7 weeks less than 2 months ago? Seriously! If Megan isn’t an inspiration to anybody dealing with serious challenges, who is? Please join me in praying for her continued recovery and positive results in her upcoming scans!
I had my scans on Tuesday and met with the Doc on Wednesday.The news is good!Everything is shrinking, everything that is active is becoming less active, the protocol is working.We’re continuing on with the treatments, starting again on Monday.I’m better prepared to combat the side effects after having a pretty successful and relatively uneventful cycle 4.I experienced no fevers, no chills, no pain, no nausea, few side effects during cycle 4.While my GI Tract caused some minor discomfort during a couple days of the cycle, those side effects were minimal compared to the hell that was unleashed for a few days during cycle 3.
Now, it’s 4 more cycles before we go back to Houston in the middle of March.We’re inserting a week between two of the upcoming cycles to permit for a couple trips that we are going to take.A week here and there will do wonders for us.We’ll be doing our travel on the bonus weeks, so I will likely feel really good during those times.As I was talking with the Doc about it and we were discussing that bonus week, I said ‘those feel good days feel so good’.Both he and the Dr. Williams looked at each other and smiled, as if to acknowledge that they were seeing some of the benefits of their work – when patients are responding and enjoying feeling good.Almost as if they were in the moment with me.Now I need to remember to remain in the moment.I mentioned earlier that I am a pretty good experiential learner.I talk about appreciating the present, but I’ve never had a great understanding of what it means to be ‘in the moment’. It’s a simple concept, but I’ve struggled to be able to define exactly what it means. I recently received an email from Bruce Feldman.Bruce sends me an email every week, providing support, words of comfort and sharing prayers and good thoughts. He hasn’t missed a week since I was diagnosed – every Friday, there is an email from him.This week he talked about how happy he was to see that I was able to compartmentalize my situation and was able to be in the moment when we were at Jack, playing black jack.He was right.I was ‘in the moment’.I was consumed by the game, paying attention to the cards, to the bets, to everything going on at the black jack table – I wasn’t thinking about anything else and definitely wasn’t thinking about cancer.That appears to be a pretty solid bench mark of what ‘in the moment’ means.Thanks Bruce for helping me define ‘in the moment’.
So, going back to the news I had just received. I sent out a few text messages to family and close friends. How does one celebrate hearing some good news? I’m not drinking, I’m avoiding a lot of foods. I can tell you – after fasting on Tuesday for my scans – I finally was able to get Felice to let me have some ice cream! While it wasn’t the Gelato that I had been so brutally denied, it was damn good! But we needed to do something to celebrate the great news. It wasn’t too hard for us to figure out what to do. We landed in Cincinnati, hopped in the car and went straight to Lindi and Adam’s house to catch Sid for bath and bed time! That’s the best way we could figure out how to celebrate – in the moment!
So now I’m back riding on the roller coaster. Felice is keeping it real, happy for the news, but trying to stay off the coaster. My good friend Howard Abromowitz always reminds me that this is a two step forward, one step back challenge. Sometimes we take many steps back, sometimes we go sideways, and I have to deal with those disappointments – and when you hear bad news, it is always a disappointment and it hurts. When I hear good news – when I have an oncologist look me in the eyes and say – ‘relax, there is nothing but good news today,’ I’m hopping on that coaster ride. It’s the same attitude as how good those good days feel – that good news gives so much hope, provides so much encouragement to keep on with the fight that I think it’s really important to use that fuel and ride it hard.
This is a bit of a break-through, having a protocol finally produce visible signs that it is working. We don’t know how long it will work, how much relief it will provide or for how long and don’t know if it will prevent and new activity from presenting itself. So for today, what we have is the knowledge that the protocol is working and I am continuing to get a little healthier with each cycle. That’s what we know now. As much as I would like to be able to KNOW that if we did a certain number of treatments that it might get me into remission and that Gelato will flow freely for all; that’s not the way this is played. We continue to move along the process with the hope that I’ll continue to move more steps forward than I do backwards, but most importantly, I have to find as many opportunities as possible to be in the moment and love the memories that we create today, because none of us know what tomorrow brings.
Felice and I remain so thankful for all of the love, support, acts of kindness, and genuine caring that so many of you have provided over the last year. We wish all of you a happy, HEALTHY and memory-filled 2019. Appreciate those that you love, live in the moment and make it a point to enjoy a little gelato along the way!
It has been a while since I posted.I hope that you all had a nice Thanksgiving and are enjoying whatever holiday season that you celebrate / observe during this bustling, holiday season.Always good to share some good news, so I am excited to share that we’re expecting our 2nd granddaughter in May.Babies are wonderful and I love the excitement and anticipation that will accompany us welcoming a new member to our family.
The road has been a bit bumpier for me the last month.I was supposed to have my 2nd cycle on the Tuesday after Thanksgiving.My blood counts were too low, so that treatment was delayed until the following week.That was a gift.I was feeling really tired and worn down and the extra time gave me a smoother runway for my second treatment.In addition to waiting for the 2nd treatment, my dosage was reduced in the 2nd cycle.The combination of the extra time and the reduced dose definitely made a huge difference in the way I have felt during this 2nd cycle.
Felice and I just returned from Houston.We went to Houston primarily to have a biopsy to do some genomic testing, looking for some mutations that might exist and may open doors to immunotherapy options. The best thing about the biopsy is the fentanyl (think poppy fields). They aren’t particularly aggressive about how much they give you.I was alert enough after the first dose that when they asked if I could feel the meds, I said ‘I definitely feel something, but I spoke clear enough and quick enough that he released some more.Wasn’t able to even ask for another release after the 2nd one :-).The worst thing about a biopsy is having to lay still for 3 hours afterward, especially when you’re in the middle of bowel uncertainty :-).Of course, they were quick to tell me that if I had issues that they would assist in facilitating – i.e. helping me with a bed pan.Quick motivator to lay still and try and nap!They did harvest plenty of good tissue.A good portion of that tissue will be used to look for those mutations – I call them gargoyles (more Wizard of Oz references).If we can find some immunotherapy drugs that will kill the gargoyles, that would be really awesome.I’m not banking on it, but I’m definitely hoping and praying and clicking my heals together in hope that they find some gargoyles that they can sprinkle some pixie dust on and put out of their misery.The balance of the tissue is going straight into research.They’ll grow my tumors from the tissue, eventually place those tumors in some mice that ended up in the wrong place, and then further attempt to try various treatment therapies on those mice to see what works.It’s a lengthy process, as this is brand new research at MD with regards to the cholangiocarcinoma disease.Cancer research chases dollars.What do you pursue – the 120,000 cases of breast cancer that are diagnosed each year (using numbers that haven’t been substantiated) or the 5,000 cases of Cholangiocarcinoma.Pharma generally is going to choose the larger fish. Anyway, if the research element of this biopsy doesn’t help me directly, it might help some other poor soul that will be saddled with this disease.Got to pay it forward!
I also saw Dr. Wolff for a quick check up.The shortness of breath that I’ve been experiencing, coupled with a higher heart rate than normal had created concerns that I might have a blood clots in my lungs.They started me on blood thinners as a precaution and I had scans first thing this yesterday.It’s not uncommon with my depressed immune system, and my cancer to have this happen.The scan came back negative, so there are no signs of pulmonary embolisms.I was actually kind of hoping I had some small clots.I know that sounds crazy – my kids have been on me about ‘hoping to have clots’.Fact is that, while dangerous left untreated, the clots they anticipated that I might have would have been quite treatable.The absence of the clots leads to the fact that this is almost certainly the evil work of chemo side effects and an extension of the fatigue that I am experiencing and I expect that I will continue to experience the shortness of breath and general fatigue, which has an unpredictable onset and requires naps at times that are often inconvenient.Don’t get me wrong, I’m not complaining.I have not had the terrible nausea and vomiting that have been all but promised side effects, and the other side effects are less pronounced than the fatigue.In all other regards, I am handling the chemo pretty well.Felice is definitely relieved that I don’t have a clot.My treatment for the clots was going to be twice a day abdominal injections that she was going to be doing.She did great on today’s injection, which was prior to the scan,but 30 days, twice a day probably would have become a less than desirable task for both of us.
My counts are stable and my overall blood work looks good.My primary marker, which has always been elevated since my diagnosis is in the normal range now, which is the good news that we’re going to hang onto here.We are planning a last minute family getaway after this round and look forward to being with the whole family for a few days.The current plan is that I’ll have two more treatments – the first Monday and the next likely on New Years Eve day.Then we’ll head back to Houston for scans the 2nd week of January to get the read on how this protocol is working.
As I mentioned, aside from the fatigue and the shortness of breath, I’m doing pretty well. yesterday in fact, was probably the best day that I’ve had in months.Dr. Wolff mocked me when I told him that I feel well.“Oh, not being able to breath after a short walk is doing well?”.I said, “Doc, if this is killing the bad guys, I’ll manage it.”I do get low grade fevers somewhat regularly, which brings on incredible chills, but that’s manageable too.The oversight and management of my bowels with these drugs is a constant challenge.I’ve made a couple bad food choices that end up disrupting my world for a couple days.It’s difficult because 99% of the time, I have zero appetite.I can tell you the Chemo diet works!There are lots of people gravitating towards the Keto diet, but no question the Chemo diet is very effective :-).Of course, Felice is constantly trying to find something that I will eat.It’s really frustrating.People ask me all the time, let’s have lunch, what sounds good?What would you like me to bring you?The answer is a frustrating one.Nothing sounds good, I can’t predict what I will be willing to eat, or if I’m willing to eat.I don’t expect people to understand, don’t want anybody to have to be in a position to understand.It is a side effect that we have to manage through.When we go out, sometimes I look at a menu that I’ve always been excited about and can’t find anything that remotely sounds edible.I order something so I don’t make other’s feel uncomfortable, and almost always end up eating – it’s the strangest thing. As I mentioned, I feel so fortunate to not yet have experienced the serious nausea and vomiting that is known to be one of the most prevalent side effects that everything else seems manageable.I have no significant pain.When I’m not napping, I generally feel really good, and i feel good when napping too! I can’t tell you how badly I want for this protocol to work.Of course, anybody with cancer wants their treatment to work.In the meantime, I just try to figure out ways to make today matter.My granddaughter, Sid is the best remedy going.She makes everything feel just a little better on even the most trying of days.Our family getaway will definitely provide the opportunity to spend some quality time with all, win some important backgammon matches and hopefully make some fun memories along the way.
I want to give a brief update on my friend Megan.She continues to get a bit stronger every day.It’s a slow process, but every day that she gets just a little stronger is allowing her to make her days count and that’s what she is all about.They’ll be visiting their favorite get away and spending a lot of great family time over the holidays.She continues to be a source of tremendous inspiration – so happy that she is showing what a true bad ass is!She defines what being a badass warrior is all about.She takes setbacks and makes them challenges to overcome.Rocky sets the bar for what it means to be a committed, loving, dedicated care provider.They provide Felice and I a great vision of what is possible!So happy to see them in a better place and enjoying moments each day!Please keep them in your prayers!
Have no doubt, while I am airing some of my gripes, I remain strong and confident that I will catch a break, that something will work, and may even be working now.As I’ve mentioned before, the effects of the treatments make it more difficult to see through to a brighter tomorrow, but every day I force myself to think of what a brighter tomorrow will feel like – can’t wait to get there.I also know all too well know that the brighter tomorrow I seek is a winding path with a lot of detours along the way.It has far more twists and turns than the yellow brick road that I would prefer to walking on.We continue on, side by side with Dorothy (Felice) my very own Scarecrow, lion, tin man and our very own granddog serving as Toto along with a couple other sidekicks, and the merry group of followers (all of you) helping us to maneuver our way to Oz.
Before I sign off, I can’t help myself but bring up the recent social media controversy over‘Baby it’s cold outside’.For those of you that are unfamiliar with the situation, there is a strong social media movement as to whether ‘Baby it’s cold outside isa ‘date rape’ song.I’m going to go away from the typical content of my blog by addressing this topic,if that song gets taken off the air because of the innuendo of ‘what’s in this drink’ being framed as a date rape metaphor, what other songs from the 60’s. 70’s and 80’s about drugs, sex, etc., are heading towards being banned from our airwaves?If you can’t recall the song – here is a link to the Dean Martin rendition, which I believe he made famous in the late 50’s.
Deanna Martin (Dean Martin’s Daughter) is being pressured to stop performing the song.She is refusing.One radio station in Arizona reportedly stopped playing it after receiving just one complaint.Other radio stations are polling listeners and removing it from the airwaves.HELP, I NEED SOMEBODY, actually, we all need everybody to join me to get fed up about this social media bullying crap.
When ranting about this at my poker game last night, Al Brown referenced ‘I saw her standing there’ written by Sir Paul McCartney and John Lennon – ‘She was just 17, and you know what I mean’.What innuendo’s are in this song?How many of you can go to the lyrics of many of our favorites from Classic Rock, Blues, or a variety of genres and find songs that feature far more intentional inappropriate lyrics than ‘Baby it’s Cold Outside’.I believe there are people that will be offended by my insensitivity to the potential date rape implications.Sorry, I really try to be objective and look through the lens from the other perspective and just can’t see a reasoned interpretation being applied here.I’m mortified that a radio station would actually respond to 1 complaint, if that is really true.Could we possibly be approaching a societal tipping point on where we draw a line on social media attacks?
For those of you that open the blog to get inspired about cancer fighting, forgive my digression.It is my blog, so I reserve the right to go off topic, and of course, you reserve the right to not want to read my rant :-).Fair trade off!I have more to share on topics aside from my disease, although my disease is what typically inspires me to write. I have avoided creating a stage of debate on topics.This topic, fueled by other recent social bullying tactics caused me to want to air it out!
I mentioned that I was at my regular poker game last night.This game started with a group of guys that have been playing together since they were teens.I joined the game about 20 years ago and I was the youngest addition to the group at the time.It is a friendly game, yet extremely competitive game with stakes that some might claim to be on the high side.The game rotates each time to a different host house and the food and beverages are as much a part of the evening as the cards.The banter is great.I laugh so much at these games that I hate to ever miss them.Unfortunately, scheduling over the last year has caused me to miss more of them than typical.We have 12 players and put a meeting schedule out and the first 8 or 9 players to commit get a seat at the table.Getting 12 men to respond to a meeting request inside 12 hours (sometimes less) tells you how much the guys enjoy the camaraderie.Make no mistake, these guys all want to win, but we have a ton of fun in that pursuit.I have received so much support from this group.One of the long time players was the first to recognize that I wasn’t looking ‘right’ prior to my diagnosis.At the time, his comments elevated the concern I had.I was already seeing my docs about some GI Issues I was experiencing.His inquiries about my health were alarming, but on target.Another member of the group, was able to get me on a colonscopy schedule in less than a half hour for the next day, when my doc was going to need a week or more for scheduling.Another member of the group tried to accelerate my getting into see specialists.Others showed their support in different ways, but each member of this group has shown a level of care and concern that is unusual for ‘men’ to demonstrate. More commonly though, its guys giving each other a bunch of crap about anything that they can latch onto.It’s wonderful to see the other side from these guys.
So I don’t know when I’ll be back in touch – until then enjoy the moment. As always, I appreciate the text messages, the emails, the phone calls, the inspiration and strength that you bring to myself and my family. The acts of kindness that so many of you have bestowed upon us have taught us how to be there for others in a different way when people find themselves in a time of need. I’m going to try to relish the moments at an entirely different level. If the holidays pass before I post again – I hope you make some memories. I hope to be back in touch prior to the New Year, but if not, I can’t wait to see what 2019 brings and I wish you all a healthy, happy and memory filled 2019! The memory that we make today can’t be taken away! So worry less about finding the perfect gift and focus more on making the special moment. Love the ones you’re with – (oh my, what’s that really mean?)
Thanks for being a part of my journey and part of my life.You all are part of my community.You bring me inspiration, you give me hope, you share your prayers, you share your love and you open your hearts to myself and my family.God Bless all of you!
Love to all!Mike. #ShaneStrong #Cancersucks #meganisabadass #babyitscoldoutside
Happy Thanksgiving!I hope that all of you are able to spend some time with some loved ones and enjoy my favorite holiday!I suppose my love of Thanksgiving stems from it’s secular nature.
While Thanksgivingbecame a holiday that I enjoyed, it was never necessarily a day where I reflected on being Thankful. Then almost a decade ago, I had the opportunity to become involved in The Feast of Giving.I provided a lot of detail about the Feast in my post last week, so if you didn’t catch that, rewind a post and the details are all there.With the Feast, I began to see first hand, in a very concentrated window of time, life’s blessings.People from all walks of life, who are truly appreciative that they are being offered the opportunity to celebrate Thanksgiving in a festive way. Whether they are indigent, widowers, small families that are new to the region, or just a group of people that don’t want to prepare their own meal, we bring those people together.For some of these people, this is one of the highlights of their year.It’s one of the few days where people treat them as patrons and not ‘handout recipients’.It’s one of the few times where they are encouraged to eat as much as they want and to relax and enjoy their surroundings.Unfortunately for a number of our guests, it may represent the only day where they comfortably mingle amongst people and avoid the stigma that accompanies societal biases.Each year I share with our volunteers that this is a day where we can change the tone of somebody’s life, even if it is just for a brief moment – and we do!
Once I started to experience that phenomenon, The Feast of Giving became one of our family’s way to acknowledge our blessings and to share our Thankfulness.The shape of my feelings about Thanksgiving continued to evolve and my blessings become ever heightened.
This year is different.Crazy as it might seem, I feel a heightened sense of good fortune.Fact, nobody gets out alive, in most cases, we don’t get a choice of how we die; but my Uber driver, Michelle, reminded me that we get to choose how we live.With that as a backdrop, I’m extremely blessed.There is no question, when under the veil of the side effects from treatments, it’s more challenging to see this as clearly, but I work really hard to maintain that outlook.This past week has been an introduction to the new side effects from a new protocol.So far, I’m coping with the side effects.I’m anxious about the cumulative nature of the drugs, but I just need to move from round to round, cope with the side effects and hope that the drugs do their work and leave my body strong enough to continue taking them.
I am really fortunate to have great health care professionals working on my case, both in Houston and Dayton.I receive extraordinary care at MD Anderson and am thrilled when I am able to have treatments here at Kettering Cancer Center.If you’re sick, having great care providers that don’t treat you as a case number, is a blessing.
We have our ‘angels’, the very special people that are there in very special and important ways that help us through the very dark, confusing and scary days.You know who you are, I’ve thanked you before and I am thankful for how you each help at this time of need and continue to be there as a critical part of our support system.
There have been so many people who bestow acts of kindness upon us, far too many to fathom listing.It is humbling and overwhelming to think of all of the comfort that people have gone out of their way to provide to us.I mentioned in a recent post that humanity is alive and well – it is definitely alive and well!
There are all of you that follow these blogs.You share your prayers, positive thoughts, send emails, take the time to call, check in via text; also quite humbling and overwhelming and definitely another example of state of humanity!
Our friends and relatives that are always present in some form, sharing their love, strength and support – so blessed to have you all there for us.
My family has been an extraordinary blessing.My daughter, Lindi, scheduling special time for the two of us plus Sid to go do something together, making sure that we get plenty of Sid visits and FaceTime calls.My daughter Allison, did all the lifting, as I was not strong enough to do so for Feast of Giving preparations.She visits often, becoming a black jack partner at Jack and always a worthy backgammon opponent.My son Jordan, he is constantly talking me up, assuring that my mental game is sharp.He knows when I’m down.He knows when I don’t feel well. He generally finds the right approach to help keep me on track. My son-in-law, Adam, has also put personal needs to the side to make sure that we get those all important visits from Sid.Then there is Felice, who yells at me each time I apologize for what she is going’s through.The only thing that sucks more than having cancer is having to be a care giver for somebody that is dealing with cancer. I believe that when a loved one is called to be a care provider, it captures the essence of their character. That’s where I believe we find the deepest definition of love.Felice is a true partner in this twisted journey.The silver linings in how our family has come together in response to my situation present themselves every day.
The best example of how I see blessings now happened Sunday.Allison came home, Lindi, Adam and Sid came up to spend the day and watch the Bengals game.I was feeling pretty decent and after lunch, I turned to Sid and said “let’s go see what we can play with downstairs.”Let’s be honest, the pecking order in Sid’s love hierarchy for our side of the family is really clear.There is mommy – she trumps all.Very difficult to get her attention when she is around.Then there is Daddy, whom she idolizes just like any 19 month old idolizes their Daddy.Then there is Nana. This kid gets a huge smile on her face every time she see’s Nana.When Lindi FaceTimes, and I answer, the first word out of her mouth is generally ‘Nana’.Then there is Allie, Jordan and Allie’s dog Nika, all of who probably fare pretty equally on the hierarchy. Then there is the rocking horse that we picked up recently at a charity auction – then comes Papa!Don’t get me wrong, the kid loves me, and I love her, but the hierarchy is indisputable.In this particular instance, she comes to me and grabs my hand, as if to say – ‘Hey Papa, I think you could use a little pick me up.’We walked down the stairs ever so slowly, as walking down stairs is a developing skill for her.She had such a look of anticipation, as to what was going to happen when we got to the basement.When we got to the bottom and I turned the lights on, she cautiously continued to hold my hand for dear life.She just wasn’t certain what to expect – it’s a big room.I was expecting her to say ‘mama’ or ‘up’ any second, but we got over to one of our old play items – and she found a bunch of ping pong balls to play with.She kept on walking around with the balls not having a clue what to do, so I picked her up and set her on the ping pong table, thinking maybe I can get her to bounce a ball.No way, but eventually she laid on her tummy, head towards the net.I grabbed her gently by her ankles, sliding her back quickly on the smooth surface of the ping pong table,saying ‘Wheeee’.This was a huge hit – this went on for minutes and every time I stopped, was followed with the word ‘more’.Finally, I was worn out, so it was time to head upstairs.First though, time to clean up.Sid found every one of those balls and placed them back where she found them – ever so carefully, one at a time.We walked upstairs again, hand-in-hand, and our little adventure was over – except for the glow on my face that I had just spent 20 minutes, one on one with that little angel.What else is there – it’s the little things!That’s Thanksgiving on a micro level and yes, I feel truly blessed.The benefit I have, is I see this little 20 minutes of time asreally special moments.Many people appreciate that moment, but the depth of their appreciation is often lostbecause these moments are viewed as ‘routine’ a matter of fact.For me, its magic!
Before I wrap up this Thanksgiving message, I want to appeal to all to discuss how critical it is for you and all your family members, friends and loved ones to see their Doctors regularly.Set up the annual physical, schedule the colonoscopy, mammogram, or whatever routine medical care is on your horizon.Take it seriously.Own your medical profile.Understand it.Do not minimize it.Guaranteed, I likely wouldn’t be writing this post if I hadn’t gone to my routine physical last year.It’s worth a brief discussion with those you care about and love.
I hope each of you find a way to experience a little piece of your own magic over your Thanksgiving weekend.Happy Thanksgiving!
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 missingFlyer 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 aneskimo 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 liftedand 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.
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.
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.
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’trelate 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 amviewing 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 receiveXeloda.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 coordinatesthe 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 notdoing 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