Help Seth and Family Fight Cancer

Hello my friends. As many of you know, I’ve been battling stage 4 paraganglioma for nearly two years. I feel uncomfortable asking for help, especially when so many have been hurting all year, but I’m afraid I need it. I have insurance, but haven’t been working and medical bills are a lot. The good news is that my last scan showed my cancer shrinking and I’m feeling pretty good, despite going through 8 rounds of chemo so far.

Last July, I went to the Mayo Clinic to be treated for extensive tumors throughout my body. The cancer had caused me to lose a bunch of weight (I couldn’t keep food down). I was about 115 pounds (down from 175 before diagnosis) and could not walk from pain. If I’d been anywhere except the Mayo I was told I’d probably have been denied treatment and given hospice treatment and sent home to die. But they decided to treat me. My scan showed a very large tumor impeding my spinal chord. They told me if I didn’t have surgery to remove it, there was a 100% chance I’d be paralyzed within days. But they also gave me a 50% chance of being paralyzed even with the surgery, and told me there was a pretty good chance I’d die on the operating table. I thought about it for 5 seconds and got the surgery. 

The surgery was a success and they removed most of the cancer there, giving me metal fusion that now means I can’t bend or twist my back very much. But only a day or two later, I broke my leg just trying to move in my hospital bed with the assistance of two nurses, because of a large tumor in the top of my right femur. So I had surgery again just a couple of days later (that was an agonizing couple of days, let me tell you) to stabilize that bone with a titanium rod.

I began physical therapy in the hospital to start learning to walking again and went home about a week later. I waited a month at home before beginning treatment to recover from the surgeries and then had radiation to the spinal area and began chemotherapy. As of right now I’ve had 8 rounds of chemo. I’ve been extremely lucky because the chemo they give me is generally well tolerated. My only real side effects from it have been that when I get home and the steroid wears off, I am usually tired for about 2-4 days and just sleep a little more than usual. My last scan showed all my cancer shrinking considerably. I have felt better with each treatment (the oncology nurses are amazed at me) and have been able to walk again, could run if I was being chased by an axe murderer, and been cleared to work out, which I’ve been doing. I have gained almost all my weight back and feel amazing, honestly. My spinal surgeon might even clear me to rock climb again soon. 

Now that I feel so good physically, I’ve been struggling with anxiety and depression the past couple of months, and really just finally processing the emotional trauma of all this. I’ve been in some pretty dark places mentally, but I seem to be doing better lately and appreciate all of my friends and family who have reached out in support, and especially the help from my wife Christy and daughter Tully. 

My next scan is April 5th, 2021. If that goes well and everything still looks like it’s shrinking, I’m going to try and get approved to go back to work this summer or fall and rejoin my restaurant family on the front lines of giving exceptional service and cuisine to the Twin Cities. My doctors say what I have isn’t curable, but that people who respond well to treatment can live a really long time with it. It’s really rare, and not very understood: only two people out of a million have it (always knew I was special). I’m almost to a point in treatment where I can start having chemo every 6 or 8 weeks instead of every 4, with the docs goal to shrink everything enough to get me a break from treatment, during which time I’ll be monitored every 6 months until treatment is needed again. There are a couple of instances of people being treated and having full remission from this cancer, but it’s so rare as to be statistically not significant. Still,that gives me hope, and when all you’ve got is hope, hope big, I say. My docs don’t sugar coat anything but have told me of people living nearly 20 years with this cancer and still doing just fine. 

I know this is rambling, but I’d like to say thankyou to the company I work for, Jester Concepts, who have been amazing and so supportive of me, particularly Brent Frederick and Michael DeCamp. The good insurance I have through them allowed me to go to the Mayo in network and literally saved my life. Thank you my friends!

Also, to everyone at the Mayo, every nurse, every doctor, every physical therapist - thank you! You are my heroes.

I’d also like to share a quick story about my spinal surgeon, Dr. Nassr, and my first post op appointment with him, 4 weeks after surgery. I was wheeled into the office, still unable to walk without a walker, one of my legs still balloonedup and swollen with fluid. He’s a big round guy, like a middle eastern Santa Claus. He had a mask on, of course, so I could only see his bright eyes. He said hi, you probably don’t remember me, we met right before we knocked you out for surgery awhile back. I said I sure didn’t, but thanked him profusely. He demurred of course, and then said this: “I want you to look at me, Seth.” So I looked him in the eyes. “I bet you feel like the glass man right now, like you can’t move or you’re going to hurt yourself, and you’re really scared.” 

I said, “That’s exactly how I feel.” I kept looking at him. 

“Listen to me carefully,” he said. “You’re not the glass man. You’re not going to hurt yourself. We know all your weak spots now and you won’t break another bone without a lot of pain first, so don’t worry about it. I want you to start moving more, exercising. Look at how far you’ve come already and how you’ve beaten the odds. Your spine was so compressed by that tumor that you should have been paralyzed. I can’t really explain why you weren’t. I’ve never seen one that bad on a person who wasn’t paralyzed. Let us hit this disease with everything we’ve got and let’s see if we can keep you alive for a really long time.” Then he patted me on the knee, and told me about a good friend of his who has the same thing, was really advanced when they discovered it, who’s had it 7 years and is doing just fine still. 

So that’s it for now. I’m feeling great, but still dealing with uncertainty and trauma and the fear of leaving my family in financial ruin, but amhopeful and looking at each day as a gift. Please help if you can. Nothing is too small. If you can’t donate, please share and pray or send a good thought. And to all my brothers and sisters battling cancer, know that you are a survivor no matter what, and cancer doesn’t define you.  If you need someone to talk to, please hit me up, as I’m a really good listener, or I can talk your ear off if you just want to hear a friendly voice. 

Thank you everyone. I look forward to seeing you all soon and giving big hugs. ❤️❤️❤️

Seth