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.
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.
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.
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!
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.
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!
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!