February 2019 – Mike Shane's Blog

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

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.

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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.

Lisa_Felice_Mike — 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.

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