Que Sera Sera

Thursday night (the night before we flew home from Houston), my dad started singing to my mom “que sera sera, what will be will be” (an old Doris Day song that I had to look up because I had never heard it before). It was just a couple hours after Dr. Wolff came in to talk to my parents and say goodbye to them. I wasn’t in the room for most of the conversation, but I understand that Dr. Wolff told my dad he had fought hard and encouraged him to be at peace and to know that his family would be ok. When my mom and I left the hospital that night, he told my mom he loved her most, and she told him she loved him more. That was an old habit of theirs – arguing about which was greater, “love you most” or “love you more”.

By Friday morning when we returned, he was much more groggy than usual, and his speech wasn’t what it was the night before. He was still communicating, but it was much more difficult and he certainly wasn’t singing or bantering. We left the hospital Friday afternoon, and although I know my dad was grateful to be flying home, the flight home was very uncomfortable and difficult for him. Despite that, he was able to communicate with Allie and Jordan on Friday when he arrived home, and when I got to the house Saturday morning he asked for Sidney. We brought her in and he got to see her smile at him and they blew each other kisses.

Things deteriorated pretty quickly from there, and he passed away early this afternoon.

I’m sorry to be the one to deliver the blow. I wish I didn’t have to. Really, I wish the blow had never come.

I knew my dad would want me to write one final post though. I know he would want me to let everyone know the news, and to once again express his gratitude for the love and support he received in response to his blog posts. He would also want me to thank Hospice of Dayton for the great care they provided in our home over the last  couple days.

As part of this final post, I include my eulogy to my dad. My dad specifically told me that he only wanted one eulogy at his funeral. He felt that people attending a funeral don’t want to sit through more than one eulogy, and that multiple eulogies are repetitive anyway. I knew my brother would feel strongly about speaking at my dad’s funeral (which will be Tuesday at 2pm at Temple Israel, followed by burial at Beth Abraham Synagogue, with Shiva Tuesday night and Wednesday night at 7pm at my parent’s home) so I decided I would share my thoughts here.

Any of you who knew my dad know that he was a great man. He loved his family, and he was so worried about leaving us. He was worried about Sidney remembering him and his future grandchildren knowing him. To say that was heartbreaking to hear him say is an understatement. I promised my dad that Sidney would remember him and that his future grandchildren would know his legacy. To make sure he knows I’ll uphold this promise, this eulogy is a list of the things we will tell them. Here are a few of the things I want my dad’s grandchildren to know:

1) Papa was a life long entrepreneur. He started finding ways to earn money when he was just a kid. He mowed lawns like most kids did, but he was also a janitor in a church, worked at a Wendy’s, and worked at a clothing store.  He didn’t work because he had to – he was fortunate enough to have parents who were able to provide him with everything he wanted or needed. He worked because he wanted to. He worked because he believed in working hard as a part of having a fulfilling life.

2) Papa was the smartest man I’ve ever known. His intellect wasn’t evident from his grades in school or in college though. Because of that, people thought he was just street smart. That wasn’t true though, he just didn’t care about proving himself in a school setting. But because of his lackluster grades, when he graduated from college, he had trouble finding a job, and that led him to start a computer store. That business morphed into a computer cable company that Papa and his two business partners, Jeff and Geoff, ran successfully almost my whole life. When they sold the company in 2014, they had over 1,000 employees and the company was earning over $150million in revenues a year. His company was his pride and joy, second to only his family.

3) Papa believed in charity and in giving to those less fortunate than us. He was involved in countless charitable organizations, not the least of which was Dayton’s Feast of Giving (which he directed for the last 10ish years) and Dayton’s Children’s Hospital (he was the Chairman of the Board for several years). But more than that, he believed in helping people. He helped people one on one, often without them knowing. He cared about his friends and his employees. When he heard of an employee who was struggling with an illness, he did things like help pay their bills, make sure their jobs were held for them, and/or make sure they were still paid. He also helped connect people with jobs – either at his company or somewhere else. I remember being in high school and him sitting me down to explain to me about how he did this – he wanted me to know and understand how important this was to him.

4) Papa believed in working toward goals. He believed in setting a “stretch” goal, working to achieve it, and adjusting the goal as necessary to accomplish it.  Failing and giving up wasn’t a part of his vocabulary or his experience; rather, he believed in adjusting the goal and working toward something more realistic. He always focused on possibilities rather than obstacles. He saw problems as opportunities, and he took advantage of every opportunity that came his way. He said that he had lucky breaks his whole life, but I don’t believe that was true. I believe his outlook and his sheer will led to all of the good things he experienced in life.

5) Papa put all of himself into EVERYTHING he did, not just his work and his family. He was constantly finding new hobbies and delving head first into them. He went through a playing guitar phase (years after he stopped playing in his band), a spinning phase, a bourbon phase, a biking phase, a wine phase, the list goes on and on. He believed in living life to the fullest, and he emulated that by his actions. He had an active social calendar and filled his days and nights with activities. He would want you to live your lives to the fullest as well.

6) Papa loved golf. He loved watching it and he loved playing it. No pressure, but he would love for you to try golf out.

7) Papa wanted the best for his family. He wanted to take you on family vacations. He wanted to buy you your first car when you turn 16. He wanted to take you to Vegas when you turned 21. He instructed your Nana to do this instead of him (and I’ll do my best to make sure she does), but I want you to know that when these things happen that it was because of him. Papa loved you all so much, even those of you he didn’t get to meet.

I love you dad. I’ll miss you every day.

#ShaneStrong #CancerSucks #CureCC

There’s No Place Like Home

Another note from Lindi,

Just a quick update to let everyone know that my dad is on his way back home from MD Anderson in Houston. Although flying in an air ambulance probably is not the top of anyone’s bucket list, it is certainly a unique experience and one that we are grateful to be able to take advantage of. We are also grateful that the wonderful team at MD Anderson has managed to get my dad’s pain under control. They really did their best to put him in a good position to come home. My dad will continue to take the Sorafenib (it’s an oral pill), and we continue to hope and pray that his liver numbers improve.

The word “grateful” appears a lot in this short post. Someone told me recently that it is hard to feel upset when you are focusing on what you are grateful for, and I’ve found it to be true. We are grateful that Allie and Jordan are headed home today and that we’ll be able to spend time together as a family. We are grateful that we have been and will continue to be able to provide my dad with the best care available. We are grateful for the love and support of our friends, community family. We are grateful for your thoughts and prayers.

Love, Lindi. #CancerSucks #ShaneStrong #CureCC

Closing from Mike:

I echo Lindi’s thoughts of gratitude that she shared. The outpouring of support from friends, family and loved ones has been nothing short of overwhelming. I try and respond to emails, text messages,and voicemails. I do my best, but don’t generally reach all of you.

In the meantime, miracles occur, and the possibility of miracles give me the will to go on. Please continue to pray for a miracle for me.

Be Well,

Love, Mike.

#CancerSucks, #ShaneStrong, #CureCC

An Update from Lindi

Hi Friends, family and loved ones. My daughter, Lindi, wrote the majority of this post as a guest columnist. Over the last 6 weeks, I have not had the energy or strength to write. I appreciate Lindi stepping in to share what is going on. So this post, until I provide the closing has been written by her.

As some of you have already heard, we brought my dad to Houston on Sunday night. His condition after 6 days at Kettering Medical Center never really improved to our expectations. After another week of outpatient care, we wanted him to be seen by Dr. Wolff. We took him straight to the ER at MD Anderson despite my dad’s warnings that you don’t go to an emergency room on a Sunday night. He was right – the care at the ER on a Sunday is sub-par and very very slow. He was finally admitted to the hospital in the middle of the night, and he’s been in the hospital there since. 

Despite the rough start at the ER, Dr. Wolff and the rest of the doctors, nurses, and staff at MD Anderson have been providing wonderful care for my dad. He’s had extensive tests, many of which have created quite a bit of discomfort and pain. After numerous tests, indicatations are that the issue is that the tumor in his liver has gotten bigger and that he is experiencing what Dr. Wolff referred to as “liver insufficiency”. After consultation with his team, he has prescribed my dad a drug called Sorafenib to attempt to target that tumor. Unfortunately, it is unclear what, if anything, can be done if the Sorafenib doesn’t work. As my dad put it, it’s a “do or die” situation. My dad has been known for his dark sense of humor and making jokes out of the grimmest of circumstances, but this one may take the cake. 

Despite Dr. Wolff’s assessment, we continue to follow my dad’s mantra he wrote early on in his diagnosis. Some of it includes: “Can’t waste any energy on negative thoughts, negative behavior, or any form of negativity,” “have an absolute commitment to finding the beauty in each day,” and “stay in the moment.” His mantra also talks about how his “inexhaustible perseverance and will” have gotten him through every hurdle life has thrown at him before. Although this is not the news we want to be sharing at this time, it’s the news we have received. My dad hasn’t given up the fight. He has always taught us that it’s important to set high goals and reach for the stars, but that we also have to understand what is possible. He taught me that being realistic isn’t the same as giving up. 

My dad’s goal has always been to beat the cancer.  As that goal seems to get further from being realistic, we set new goals, with the hope that achieving those smaller goals may lead us back to his original goal. We are all doing our best to stay positive, keep my dad feeling good, and enjoy our time together. 

Please keep praying for my dad. Please pray that the Sorafenib works. Pray that he feels good. And please don’t feel that you can’t continue to reach out to my parents. We feel so fortunate for the outpouring of love and support we’ve received since my dad’s diagnosis. I do hope you’ll forgive any texts or calls that do not receive a response. Please know that the lack of a response is not a reflection of our lack of appreciation or our desire to connect with you.

As Lindi passes the ‘scribe’ back to me for edits and additions, I want to share how proud of and blessed I am for my family. Such a wonderful crew trying to help me overcome extremely difficult circumstances. Despite our understanding of the situation, it’s not as if I accept this probable outcome. In the same way that you have all embraced our situation over the last 16 months, I appreciate you continuing to keep my family in your prayers.

I hope to be back in touch, but to the extent that doesn’t happen, Lindi will take over any communications as we continue to maneuver these infested waters.

Your support has meant a lot to us. Yes, we are all scared of the challenge ahead, and it sucks. I’ve said all along that we don’t have a choice of how we die, but we have a choice of how we live. It’s hard. I want to be strong and I want to know that I will get through this, but there have been a lot of times lately when meeting that standard of strength has become increasingly difficult. This is simply a barbaric disease.

Thanks again to all for your love and support!

Love,

Mike

#cancer sucks #ShaneStrong #curecc

From Gut Punches to Gut Wrenching….

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

Fellow Cholangio Warrior – Jack!

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

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

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

Love Mike, #cancersucks #ShaneStrong

Gut Punches…Outlier…ScanXiety

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

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

The mental game has been the challenge this past week.  As some are aware, I participate in the Cholangiocarcinoma Warrior group for patients on Facebook.  It’s a great source of hope, information, inspiration, resources and experiences coming from people that are dealing with the same disease.  The downside is that we hear of the disappointments, the frustrations, disease progression, and people passing away.   There are times when I can feel the heartache of what people are going through. Chemo induced frailty of my emotions, combined with just being human takes over.  Last week, I learned that a couple of the warriors that we met at the conference passed away. Gut punches.  I’ve really been working to re-center and focus on the positive outlook that is vital to living in the moment and living the vision I set forth in my Mantra last year when I was diagnosed (see post that includes Mantra  – https://wordpress.com/block-editor/post/mikeshaneblog.com/123).    Cancer is full of gut punches, so I figure I need to deflect those punches a little better, and counter punch a little harder.  Either way, this dialogue is why there are therapists :-).  See you Thursday Ray!

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

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

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

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

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

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

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

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

The next few weeks bring March Madness, The Masters and Sid’s 2nd Birthday!   Next week brings scans!  I am definitely full of ScanXiety!   There really is no way to avoid it.  As I approach scans next week, I would be lying if I suggested that I am not nervous.   If I have any ache, or flash of pain, my mind plays games and tells me – ‘Dude, that’s cancer growing’.  It’s totally irrational, non-logical and almost senseless.  I work on convincing myself that whatever the outcome is, is what the outcome is.  Another voice says ‘Dude, you’ve been feeling good.  Your blood work is good, we’re going to get a good report’.  It reminds me of a scene from Animal House, except the topic isn’t cancer.  The scene involves Pinto, the mayor’s daughter, the devil and the angel.    If you don’t know it and are interested, go to the YouTube link below!  Warning, some may find the content offensive and disturbing, adult situations, sexual content and a lot of other stuff that would not be classified as appropriate for any viewing audience!  You will be required to confirm that you’re old enough to be viewing.  (https://www.youtube.com/watch?v=3auMuzdoPkE

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

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

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

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


Cycle 7…the wait for scans…#BionicBadAss

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!  

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

Appreciate the bad shots…CCF Conference…on to Cycle 6

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.  

 

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.

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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.

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Felice, Mike with Lisa Craine (Mike’s CC Mentor)

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. 

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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.

On to Cycle 6!  Be Well,  

Mike. # CancerSucks. #ShaneStrong #MeganisaBadAss #curecc