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My TC Story of hope - 36 years later

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  • My TC Story of hope - 36 years later

    I felt inspired to share some of my TC story...

    I was diagnosed with stage 1 embryonal carcinoma in the right testicle when I was 4 years old. We found it because I told my dad that it hurt when I went to the bathroom. I was treated at Primary Children's Hospital in Utah in 1983. The tumor was found and removed but the surgeon also recommended doing the RPLND and chemo which my parents elected to do. This was before the nerve-sparing RPLND was common. As a result, I've always had retrograde ejaculation. Shortly after my RPLND, I developed 2 sequential bowel obstructions, both of which required additional surgery to correct. I was treated with several chemo drugs (actinomycin-d, adriamycin, vincristine, and cytoxan).

    Looking back, I remember what felt like months lying in a hospital bed all by myself. My mother tells me that she or my father were always there and I believe her but somehow that's not what I remember. I felt alone much of the time. The nurse was very kind but when I finally got up the courage to stand up and hit the call button to ask for some food, she told me that I couldn't eat the kinds of foods I wanted. That was deflating because they had been complaining for a few days about how I wouldn't eat. I remember kindness everywhere I went for treatments except one place - as I was being gassed to sleep for surgery. I was told that if I didn't like the smell of the gas, to just take a deep breath out. Of course, that meant that I had to take a deep breath in and inhale the sleepy gas. I felt lied to and angry as I fell asleep. I remember doing an upper GI while I was awake. I had to swallow in sync with the doctor pushing the probe down my throat. His patience and kindness made the procedure bearable. I remember that people from church periodically visited me in the hospital and brought me gifts and sat with me. There's no question that I was loved and cared for through the entire diagnosis and treatment.

    As a kid, I was always a bit shy. I could never really keep up with other kids my age in gym class or when playing sports. Of course, I didn't understand why. I just thought that I wasn't as good at sport-like things. In spite of that, I was always interested in extreme sports and I found a love for BMX biking and skateboarding and much later on, parkour.

    As a teenager, some frustration mounted as I continued to have difficulty keeping up with other kids. By this time, it was clear that I would probably be skinnier than most people for my entire life. This didn't seem out of place because my father and grandfather were both skinny. However, I often woke with dull back pain and it would take an hour or so for that pain to fade. I struggled with early mornings trying to make it to school. So much so that in highhighschool I kind of gave up on getting up on time in the mornings.

    As an adult, I still experience poor quality sleep and the same back pain albeit more intense. I have also been formally diagnosed with long-term gastroparesis. Often when lying down (especially on my back), I feel irritated (nerves in legs and shoulders) and cannot get comfortable. This typically shows up in conjunction with very itchy inner-ears and often with neck pain and headaches.

    With regard to having children - we've tried it naturally, then through artificial insemination (IUI), then in vitro fertilization all of which failed. The sperm extraction process was pretty horrible due to retrograde ejaculation and even then, we were unable to retrieve enough to be effective with intrauterine insemination. We were told that if we gave in vitro another try, it would likely take, but my wife had been through too much at that point. The prep for IVF is brutal on a woman's mind and body (mostly due to the medications). If I could go back and do it again, I would skip all that expense and pain and go straight to foster care and hopefully adoption through the state foster care system. There is so much need out there for good parents. We have since adopted 2 incredible children and fostered a 3rd who was adopted by her grandmother. They are ours - every bit as much as a natural-born child would be. We love them more than anything!

    I've learned over the years that most of my symptoms seem to start with poor digestion (possibly leaky gut). Here are some tools that I've found helpful in dealing with my symptoms...
    • Constipation and dull back pain
      • Use probiotics, Miralax, and/or pancreatic enzymes (Creon in my case). For me, Miralax has the biggest effect, but it also the most expensive.
      • Follow a gastroparesis diet - more frequent small meals, very little fiber, etc.
      • Go for 15 to 20 minute walks after each meal if possible (especially for larger meals).
      • Deep-breathing 1/4/2 ratio (stimulates the lymph system?). For example, breathe in for 7 seconds, hold it for 28 seconds, and breathe out for 14 seconds. Repeat several times. This has an almost immediate effect on my back pain. Holding for even longer seems to help even more.
      • Don't lay on back while sleeping or within several hours of eating.
      • Don't eat for at least 4 hours before bed.
    • Neck pain and headaches
      • I went to a physical therapist who showed me several ways to put counter-pressure on my neck from all directions in a safe way - essentially just using my hands to push against my head. Each time I would have a flare-up, I would do these exercises and I could feel cracking in my lower neck which provided relief. After about a month of doing this, the cracking stopped, the neck pain pretty much vanished and hasn't returned for at least a year at this point.
    • Depression
      • Take D and B vitamin supplements and go for frequent walks.
      • Every time that bad feeling comes back, replace it with something uplifting or empowering.
      • Stop being paralyzed by something that happened in the past. There is always something I can do today to make things better. And the trying alone changes everything.
    Over the years, I've dealt with my fair share of depression and at times I've lived a fairly narcissistic life. But I've learned to change the story I tell myself about my cancer experience. It was the most awful experience of my life. However, it gave me perspective. I have greater compassion for the poor, the elderly and anyone who suffers because I know what it's like to hurt both physically and emotionally. I have a greater desire to help those people. And when I do, it completely changes how I feel about myself. It makes me feel like my life matters. And to me, that is a gift.

    Here's to another 36+ years of healing and improving each day!