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.
– 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.
On to Cycle 6! Be Well,
Mike. # CancerSucks. #ShaneStrong #MeganisaBadAss #curecc
11 thoughts on “Appreciate the bad shots…CCF Conference…on to Cycle 6”
You’re an inspiration, Mike. You’ve got this, Mr Outlier!
As our group gets ready to head to Scottsdale for the annual golf trip, it hard to believe it’s been a year already since you had to back out of the trip. We were all concerned at that time, wondering what “not good news” was to follow.
Since that trip you have gone through a lot but have grown in so many ways (I not talking about your size).
You will again be missed but we will toast you, think about you and look forward to you joining us next year when you are part of the NED group. We may have to change the name of our golf group to that name – and will be happy to do it! Be well, and love to Felice and the rest of the Shane clan.
Great to hear about the travel and happier you felt well for it❣️
The conference sounded amazing for knowledge and support.
It was great to have the opportunity to see you and Felice last month.
As always sending strength and love.
Knock the 💩 out of round #6
Thanks for your update, Mike!! Go conquer # 6….Stay strong!! and of course Go Pats!! Enjoy the game.
Keep being “selfish”! Thinking of you and Felice!
Hi I would like to make a donation from Carole and Bernard Rabinowitz Fund towards research to fight this particular cancer! When you get a chance maybe you can tell me where I can get information to accomplish it! Meanwhile I wish you the best in your battle against it Your friend Bernie
Bernie, that is very kind and generous of you. I was really impressed with the team. Extremely impressed by their ability to have many of the top Docs and researchers from most of the leading institutions, both in the US and internationally. The URL is http://www.cholangiocarcinoma.com. Below is a link to the screen shot from their donation link which has their info, including their 501(c)3 info. Please let me know if you have any problems accessing the link below. Thanks again, you have been so encouraging, can’t really begin to express my appreciation!
Mike-I look forward to your blogs and love to hear about your positive progress-it makes my day! I look forward to seeing you at the 2019 Feast of Giving-
Tina (Keith McGillvary’s wife-from C2G-Dayton)
Keep being selfish Mike, keep being selfish. My thoughts are with you.
Keep being selfish, Mike; You and Felice both, be very, very selfish.
That’s what we all want. And you’ve given us all a great mantra.