In January of 2008 my 20 year old son Josh was complaining of back pain. We took him to a doctor for his back but also to perform an annual check up and fill out health papers for Josh to start a master's program in Canberra Australia. The doc said Josh hurt his back and prescribed Vicodin. One week later the Vicodin was not helping and the back pain was getting worse. We took Josh back and he saw another doctor who did not re-examine him, but added physical therapy and massage to help with the back pain. I also took Josh to a natural doctor and after that visit Josh did feel better.
The clock was ticking for Josh to leave for Australia so the deal was upon landing, that he had to see a school doctor if his back was still not feeling well. He did and was given Aussie vicodin. Two weeks later he was starting to miss class due to his back pain. I called the college health center and begged for someone to help to my son who was then thousands of miles away. The next day a doctor drew blood and Josh's tumor markers were in the 60,000 range. It would take 3 weeks to get an x-ray so she recommended that Josh come back to the states. Within 24 hours Josh was on a plane to LAX. It is so important that we educate not only the public, but doctors as well. Most general practitioners will never see a case of TC and therefore are likely to misdiagnose just like they did with Josh.
I picked Josh up at the airport and took him to the ER. After three hours of testing we were told he had stage 3c non-seminoma testicular cancer which had spread to his organs, his spine as well as large blood clots near his heart and lung. He was sent to cardiac ICU and had an orchiectomy days later, while on blood thinners (which he was on for 1 year). There were complications and he later had to have a second surgery. He started on 4xEP and did not have the Bleomycin because of the extensive amount of cancer on his lungs. Josh was admitted to the hospital every time he had chemo and altogether Josh was in the hospital for 40 nights.
The RPLND was the next step, but two separate tumor boards at excellent cancer hospitals could not agree on the plan: surgery after or before more chemo, or without additional chemo. Upon the recommendation of a TC forum, which was of great emotional help to me, we visited Dr. Einhorn and his recommendation was to hold off on the surgery and if need be, it could be performed at a later date. We were later told that Josh had a 3% chance of living and that he is truly a miracle. Josh is now cancer free, 9 years later!
Nine months after Josh's diagnosis (when we were just starting to breathe again), I was diagnosed with metastasized thyroid cancer. I had surgery to remove my thyroid and two rounds of radioactive iodine, in 2009 and 2010. I have been both caregiver/decision maker - as Josh wanted to show up and fight - and survivor.
Cancer has impacted my life in so many ways; the emotion roller coaster; the fear of losing my son; the rose colored glasses that were ripped from my face; survivor guilt; PSTD; depression, anxiety; and gratefulness beyond belief. I have gone through the trenches with people I only met through the internet, sharing a common bond that none of us really want to share. My new-normal life's passion is to speak to others about their cancer or caregiver journey and I currently do so through several non-profits. I have also returned to college in order to earn my bachelors then master's to change professions and counsel cancer patients, survivors and caregivers. It's an eight year plan and I'm in year four.