Tell us a little bit about yourself.
My name is Dan Mulligan and I currently live in a pimped out, forty foot Winnebago out west with my three cats, Ceeeeeeeatie, Deeeeeeeogie and The Pan-duh-Beeeeeeear. We live for two to four months at a time anywhere there are beautiful sunrises/sunsets and mountains. At the end of December, we are picking up and moving to Kanab, Utah for four months where I’ll spend my mornings volunteering at Best Friends animal sanctuary, my afternoons napping and working out, and my evenings finishing the first snarky and sarcastic first person book on sarcoma: “You Walk Him and Pitch to the Rhino: A Misanthrope’s Guide to Sarcoma.”
Once I got through post op radiation, I did a weighted average Kaplan Meier using my histology and data points and decided that given the lower OS odds, my cats deserved some focused human cuddling time for as long as I was around. I had a family meeting with the cats where I told them I had a cancer that would definitely spread and eventually end my life. They immediately agreed (unanimously) that getting massive amounts of petting would be most excellent and that we ought to downsize the house. I retired, sold the place by the beach I lived in for the last twenty-four years in La Jolla, CA and the cats and I have been semi-nomadic for most of 2019.
I have a deep and abiding love of Cleveland sports teams, animals, music, and dating and while I am exceptionally accomplished at animals (I bottle fed and raised 817 kittens and puppies for Helen Woodward rescue through the years), I am a terrible guitar player and relatively bad at dating. Which makes it significantly easier for me to approach my sarcoma experience than had I remained married or if we had procreated. Being single with sarcoma makes the experience far, far easier.
What is sarcoma?
Aside from being a very rare (less than 1% of all cancers) cancer of the bones and connective tissue, I heard a surgeon lecture where the doc said "I think of sarcoma as the error rate of genes... it is a random event... it's not something you did or didn't do." That sentence explains both the high proportion of children who, unfortunately, get sarcoma as well as the paucity of “cures” for sarcoma, outside of surgery. Since most sarcomas are unique, mine is a high grade round cell variant of a dedifferentiated liposarcoma that originated in the mesenchymal fat cells
The silver lining of that surgeon’s sentence, because there is always a silver lining, is that every dollar the Wendy Walk raises for liposarcoma research will likely positively impact all carcinomas as well. Because sarcoma is a genetic misfire, it is extremely challenging to treat/cure. However, because the vast majority of sarcoma research is done at the genetic level, it is extensible to most carcinomas. Therefore the $5M raised to date by the Wendy Walk efforts, down the line, will also help hundreds of thousands of breast, colon, prostate, etc cancer patients. There is a wonderful, long term multiplier to the liposarcoma research funded by Wendy Walk: it is not only us liposarcoma patients who will benefit.
How did you first become aware of your diagnosis?
For thirty years, I’ve flown 130,000 miles a year and lived in hotels 220 nights a year. Spring, 2018 I was spending weeks at a time in the southeast with one of the VP’s on my team. Over two, two week trips, my tumor grew from golf ball to baseball size and I could feel how it got bigger each morning. Before a meeting at Ole Miss’s teaching hospital in beautiful Oxford, MS I asked my colleague if he thought it felt like an indirect hernia...the only other malady in that pelvic space. He made me get on a plane home that evening and would not let me go to the Arkansas meetings at the end of the week. That’s how big the original tumor was. Like all men, I ignored it for a few months longer than I should have.
I have been in the OR watching general surgery cases for thirty years. Because of that, I knew there are very few male pelvic carcinoma and was 99.9999% certain it was a sarcoma even before the surgery. Moreover, I was intimately aware of what that fast growth meant in terms of aggressiveness and mets potential. The only remaining questions after surgery was grade, stage, histology, etc. Those were answered after the radical orchiectomy and, like roughly 30% of us with sarcoma, the answers were not the ones I had hoped for.
Did you experience any symptoms before you were diagnosed with sarcoma?
I did, but they only made sense once I had the round cell DDLPS diagnosis. For five years before the tumor on my spermatic cord went into hypergrowth in spring, 2018, I had very painful hydroceles on my testicles, unexplained weight gain/loss, fatigue and significant night sweats. I was tested for Hodgkin’s in 2016 and 2017, but everything came back negative.
When the tumor started growing in my pelvis in spring, 2018, it grew from acorn to orange sized in under one hundred days, so I knew what was going on. The years before that, it was probably a small, low grade, well differentiated liposarcoma on the spermatic cord that was causing the random symptoms. Then at the end of 2017 it dedifferentiated into round cell and decided to grow.
As expected given the vascular invasion, necrosis, grade and histology, I got nine bilateral lung nodules within the first twelve months, although they all still remain smaller than 5mm. The lung symptoms are all the normal ones: episodic hoarseness, night sweats, periodic shortness of breath, etc. However, they are far less severe than I expected them to be. I am still able to do an hour of cardio and thirty minutes of lifting on days I am not wiped out. Again...silver linings.
Where and how did you seek information about sarcomas?
I had a head start here because I have been a VP and C team member for various surgical companies through the years. Part of my job has always been having my teams analyze peer reviewed journal articles or run our own clinical trials. Right after my surgeon told me he suspected a spermatic cord sarcoma before my surgery date, I started researching all the peer reviewed journal articles I could, looking for evidenced based answers. I still do that every morning for three hours. I now have one of the most in-depth library of pelvic sarcoma and LPS peer reviewed journal articles in this galaxy or any tangential galaxies. The plan is to place them all onto an FTP site at some point so they are easily accessible and searchable for anyone looking into their liposarcoma diagnosis.
What treatments have you received?
I had a radical right orchiectomy summer 2018 and then had 68 Gray of post-op radiation starting roughly five weeks after they removed my tumor. It took a while to get a final pathology report because the hospital where I had my surgery in San Diego had only had one spermatic cord sarcoma patient in thirty years. They got a second opinion at Indiana University where that pathologist suggested it was a Ewing’s-like sarcoma. Then Sloan Kettering’s path department gave me the final diagnosis: grade 3 round cell dedifferentiated liposarcoma with an unusually high mitotic count of 40 and an unusually high round cell proportion of 90%. We were unable to analyze post op treatments until we had that final, definitive path report.
I am currently thinking through the choices for when the lung nodules begin to grow, weighing the quality of life aspect with the potentially increased PFS and OS. Given my lack of wife and offspring, I will probably choose maximum quality of life when I have to make that decision. If I had a wife and children, I would opt “in” on anything, even if it had a one percent success rate in the peer reviewed research.
What’s the best piece of advice, you received once you received your diagnosis?
The best piece of advice I internalized was from well before my diagnosis and it came from Zach Sobiech and Randy Pausch’s “Last Lecture”. Randy Pausch’s advice was “we cannot change the cards we are dealt, just how we play the hand”. That sentence is scribbled in Sharpie on a piece of paper on the fridge, along with “not today, sarcoma”, which I clearly stole from “Game of Thrones”. That’s also the name of my foundation which will donate 100% of its donations to the Wendy Walk: Not Today, Sarcoma.
I followed Zach Sobiech’s story from the moment it appeared on Soul Pancake in 2013, before I had cancer: it is a remarkably beautiful story. Zach’s mom’s comment, in discussing Zach’s foundation was “when hope for a cure or a large amount of extra time is taken off the table, where can you channel hope?” For the Sobiechs, the answer was his song “Clouds” and the large amount of money they’ve raised for childhood sarcoma research. My takeaway from Zach’s story, especially his quality of life decisions at the end, was live each day to the fullest. The definition of “fullest” is completely up to you. I’ve spent 72 hours at a time in bed binge watching Netflix when I’m feeling beat up. That, too, is living life to my fullest. Plus, that’s pretty much heaven for the three cats. I may not have a year from now, but I most certainly have this evening and this evening is going to be magnificent. Every evening is magnificent.
What do you do to deal with the stress that comes with a cancer diagnosis?
I channel it one of three ways. I still do pro bono work for friends who have surgical startup companies to keep my brain busy. Not traveling as much as I used to has allowed me to play my guitars more, which has made a world of difference. Three years ago, on a ten scale, I was a solid one and a half on all my guitars. Today, eighteen months into this sarcoma journey, I am at least a two. Maybe even two and a half on the twelve string guitars. On a good day, with an easy song.
I also deal with the stress by focusing on the “what comes after I die” aspect of the sarcoma journey. What am I going to leave behind that can help other people, both within the sarcoma community and in other communities?
Because I am incredibly impressed with the amount of money Wendy Walk has raised and how well they administer that cash, I started Not Today, Sarcoma and my people will send 100% of what is raised through those bourbon-related events directly to the Wendy Walk. Our goal is start in 2021 with twenty-five NTS event cities and then expand to fifty cities and eventually contribute at least twenty percent of the annual funds raised by Wendy Walk.
One hundred percent of the profits from “Misanthropes Guide to Sarcoma” will go directly to Best Friends Animal Sanctuary in Kanab, Utah because some of my happiest times in the last year have been at Best Friends with their cats and dogs. And I have also been setting up my third “in lieu of flowers” channel, which is getting graduates from The Last Mile hired when they leave prison. In short, to deal with the stress I have become more “other” driven than previously. Knowing that many people and animals will benefit once I become terminal and pass on removes about ninety percent of the stress each week.
What makes you feel strong?
Two things. Going to the gym. I promised myself at thirteen that I would work out, regularly, until the day I die. I’m lucky that I can still do that most days.
The second thing is knowing that this genetic misfire, as mentioned in the previous question, is going to help a lot of people and animals who otherwise would not have received that help.
And tangentially, steroids! My testosterone level went down to zero after the surgery and the radiation and that’s where it will remain for eternity. All of us sarcoma patients have a certain part (or parts) of our body changed forever and ever. Mine was my pelvis. I have good docs who RX’d me excellent hormone replacement therapy and that makes me feel strong. And bourbon, but that’s a story for a different day and was not RXd by a medical professional.
Whatʼs your biggest fear?
Probably dying before I finish setting everything up? I don’t have a lot of fears, really, because as mentioned above; this journey is far easier for a single person. My foundation’s tag line is “don’t be afraid, unless it’s a bear, because bears will (expletive deleted...rhymes with trucking) kill you.”
To deal with the thoughts on dying. I’ve approached the last two years by thinking that maybe today I am far older than I was meant to be. Maybe a handsome, Brad Pitt looking version of Death missed my week way back when while he was consorting with Bill Parrish’s youngest daughter instead of killing Bill Parrish with a heart attack. That tends to keep each day more entertaining because this is all borrowed time. Bonus minutes. Icing on the cake.
Whatʼs the most annoying thing people say to you?
That would be a toss-up between “keep fighting” and the all too common “don’t give up” when I explain quite clearly that my brand of sarcoma is resistant to both radiation and chemotherapy. I have by no means “given up” on anything: science has simply not yet caught up to my genetic abnormality. I have by no means “given up” on anything. I am living precisely the life I want to live right now given the OS and PFS odds and will continue to do so as long as I choose to do so.
Quite frankly, sometimes when you have sarcoma, you’re bone tired for days at a time. By throwing that whole “keep fighting” on someone, you may be tossing a bag of rocks on their back when perhaps all they want to do is sleep for two days. Maybe that person’s version of fighting is just getting out of bed to brush their teeth and find the remote. The singular sentence anyone should say to a cancer patient, any cancer patient, is “let me know how I can help if you ever need help”. Full stop.
What helps keep your spirits up?
You should SEE these three cats living it up in the Winnebago. It’s like a new adventure movie every day that would make even Scrooge laugh like a hyena. Moreover, each place I have chosen to live for a few months at a time has been breathtakingly beautiful and intentionally peaceful. Absent this sarcoma diagnosis, I’d still be working 60 or 70 hours a week and not stopping to smell all the flowers I have smelled this year.
I have smelled more flowers in the last year than in the previous twenty combined. I could very well be the happiest high grade sarcoma person with lung nodules on this planet because I’m spending every minute of each day doing only things that make me happy. Up until last year I was unable to live like that.
What gives you hope during this time?
I’ll begin this last question by saying that while no time is a good time to get a sarcoma diagnosis, these days it’s far better than even twenty years ago. More research has been funded in the last ten years than in the eighty years before those ten...combined. There are far more options today than there were in 2000 and there will be far more options five years from now when all these Phase II and Phase III studies finish. Roughly 65% of sarcoma patients are going to get their diagnosis and find out it’s either low grade or treatable or relatively easy to manage. If that’s you, two or three years from now, all this will be in your rear view mirror; a distant memory. I’ve had thirteen major surgeries since 2010 and they get easier and easier to heal from as you go. Pinky swear. Shane Falco, gloriously overacted by Keanu Reeves in “The Replacements”, was not lying when he said “pain heals, significant others dig scars, glory lasts forever.” You’re going to be A-OK at the end of this.
Then there are those of us sarcoma patients who present with a relatively terminal histology. We get this blessing of knowing that we have a shelf life so that we can live life to the fullest each and every day for however long we have. Doing, quite literally, everything that makes us happy each day with a certain enhanced acuity that we didn’t have before they read us that pathology report. Life is richer, laughter sounds better, music sounds more harmonic, beauty looks more extraordinary, etc. Even my cats feel better when they make the nightly cat pile under my left arm. Unlike a car wreck, we get to orchestrate precisely how our final months/years are and experience them more deeply. That’s pretty cool.
As mentioned previously, knowing that given a long enough time horizon, this journey I am on now, regardless of how quickly it ends, is going to have a positive impact on others. It may be Not Today, Sarcoma kicking in a million dollars to the Wendy Walk over the next ten years and Wendy Walk funds a tangential study that finds a cure that helps kids with Ewing’s. Or it may be a few hundred dogs and cats finding new homes through Best Friends because the profits from my book allowed Best Friends to take in extra abandoned pets.
Or it may be forty or fifty Last Mile graduates find jobs when they get out of prison because my friends or friends of those friends heard about The Last Mile through reading about my cancer. Maybe people reading my sarcoma story look up “The Last Mile Chris Redlitz” and hire someone from The Last Mile next month? In a perfect world, it will be all three of these. Those potential outcomes of this disease gives me a great deal of hope. I’m a big silver linings person. Best of luck with your own personal sarcoma journey and I hope you have day after day of silver linings.