Evicting Tuborg

On the way home from Patagonia in April of 2019 , I felt something in my leg. I figured I tweaked my adductor from too much yoga (kinda serious).  Over the next 2 months the twinge grew exponentially until it was the size of a grapefruit right in my groin. The unthinkable had happened. I had cancer.

I've been keeping a journal on Caringbridge  over the last year and a half as the problem has spiraled out of control. At this point I've had more surgeries than I can remember and my daily pain is worse than anything I ever imagined.

I'm pretty good at a lot of things but one thing I've had challenges with is asking for help. I usually am the one to shoulder the load, pick up the slack, and tough it out but this battle is way too much for me to do alone.

I've had a helluva journey to this point. I have a blue round small cell sarcoma officially called CIC-DUX4.  This type of cancer was only defined about two years ago and like me is innovative and resilient. I've lost 45 pounds, had over 40 days/nights of chemo in the hospital, 20 radiation visits, and had 3 masses removed from my groin, abdomen, and guts. But the worst part has been the pain.

I've always prided myself in being able to handle a lot but my resolve has been put to the test. The tumors grew on my femoral and femoral cutaneous nerves and created a new meaning of the word pain. It's often felt as if my leg is  placed in a deep fryer and all my senses cry out in unison. It's absolutely bonkers and turns me into what we call 'the Pain Monster' similar to something out of an X-men movie. I have an amazing team of doctors helping me manage the pain with a cocktail of drugs and myriad ice packs. It's not easy but coincidentally I'm 'experienced' so I'm able to keep my head straight through tremendous doses of all sorts of medicines.


I've never been one for handouts but due to covid my business is running on fumes and we are working without pay to push a boulder up the hill so that many may witness firsthand the elegance of the cosmos.

After my last surgery we found nodules in my lungs which are the final destination for CIC-DUX4 sarcoma. My radiation doctor suggested chemo and the chemo doctor suggested radiation. It's a game of hot potato that no one feels confident about. I may not be a dead man walking, but I'm sure as hell fighting for my life and may need a miracle to survive. 

Fortunately I dabble in the miraculous arts as well as serendipitous services and in scouring the internet for treatments my sister came upon something prevalent in the late 1890's until it lost FDA approval in 1933 during the rise of chemo and radiation. Comically enough it is called the Coley treatment . 

Those who know me know that KoChen is my stage name which is a combination of my wife's and my surname since both my wife and sister are named Karen. Kohley and Chen make KoChen but the point is that the treatment is phonetically my given last name : Coley.

Hilarious coincidence aside, this treatment has found success where others haven't. The problem of course is that it's not covered by insurance and sans insurance it's expensiveAF. I entered a treatment center in Mexico last week only to be unceremoniously booted under threat of Mexican prison. For that story, you'd need to be on Caringbridge .

While getting ousted from one of the only places where the Coley treatment is administered sucks, what is additionally terrible is that they kept the $35k we paid in advance for the services. I have my own ideas about the reason for my ejection but those will have to wait for another day. It's important to stay on track.

Luckily, like in Star Wars... 'there is another'. 

Its called the Issels Clinic  in Santa Barbara. I'm scheduled to go there next week and begin treatment as the nodules have grown from 3 to countless in less than 3 weeks so I may not have much time to dilly dally.

We aren't depending on the ridiculous coincidence as there's other unexplored options (dendritic cell treatment) as well as other clinics in Washington and Arizona that have had success where chemo and radiation haven't. We're trying to leave no stone unturned but at the same time put the stones back so the roly polies have somewhere to hide. It's kinda scary out here when your rock gets overturned.

I've lived a wonderful life. I've travelled around the world and I have a wife of 13 years who has stood beside me through thick and thin. I have a wonderful mom and sister and my brother in law is a great best friend. Karen's side of the family is amazing as well, in fact I have a great freaking life that I don't want to leave behind. 

I would likely accept my fate if it wasn't for my son Sasha. I have done enough in my life to satisfy my thirst for adventure but the thought of leaving Sasha without a father completely crushes me. I lost my father when I was 25 and I feel I was cheated out of many experiences that could have strengthened what was a real rocky relationship. Leaving Sasha short of his 5th birthday is just a terrible thing to think about.


So this is what I'm raising money for : my treatment and if it doesn't work out a fund for Sasha's future. I've really tried to tough this out and hold the burden myself but I've been repeatedly asked to provide a way for people to support me. I can finally admit, I need the help. The cancer has not only eaten away at my body but it's decimated our savings and caused major stresses on the daily. I realize that these are tough times for everyone so I won't feel slighted if people can't donate. This is just an option for people who can.

I also am open to receiving jokes both good and bad, heady memes, crystals, thoughts, prayers, various forms of magick, and anything else a person may need going through this intense form of cancer. 

So I think this is it. If you want to follow along with my journey you can do so here .

I have it on approved visitors only as I'm kind of a private person social media wise. It's a double edged sword that I think sways heavily negative these days and so I've been careful to approve only those who I want to see the raw truth of my story. If you'd like a peek request access and the oracle shall decide if you may reach in to touch the elephant.

Thanks for thinking of me and caring. I hope that I can beat these fucking things and keep doing good things for the world and raise my son to be the little Jedi he is.

With courage, compassion, and appreciation...

 and Love... LOTS of Love.