This is the second installment of Bryston’s testicular cancer story, you can read the Part One here.
With the numbers in my favor, I hit the ground running after my two weeks of post surgery recovery. I went straight back to work, began a new workout routine including lap swimming lessons, and strict adherence to a clean ketogenic diet. There was no doubt in my mind that the surgery was my moment to pivot and permanently shift my lifestyle. And because I had only had Stage 1A and minor surgery, I did not consider myself to be a real “survivor” – something that I thought on daily. And because of this, I was never sure how to talk to others or inform those who didn’t know what I had just been through. I never felt timid about sharing the truth because I believe it’s important to spread awareness, but explaining over and over again takes time and energy.
As the family and I began settling back into routine, the holidays hit. Prior to Christmas break, I had my first surveillance scans done. My follow up appointment was scheduled for a few days into the new year, and I continued to feel confident given my renewed health focus. Katie, on the other hand, saw a few things that flagged her suspicion. The first week of the new year, we found that Katie’s suspicion was correct – the cancer had spread to my abdominal lymph and was visible as a 1.7 cm tumor. We quickly shifted gears back to research, discover, decide, and fight mode.
Katie hit the social media support groups hard and quickly became proficient in the chemo protocols. I began to prepare mentally and better understand what was ahead – the term survivor now seemed valid. While the clock was quickly ticking, we wanted to explore all of our options given the magnitude of the situation. After briefly exploring possible natural paths, we quickly concluded that chemotherapy was our best option, given the high success rate of the BEP (Bleomycin, Etoposide, Cisplatin) protocol that Dr. Einhorn created in the 1970’s. However, the referred oncologist was recommending a newer similar chemo treatment, that eliminated the Bleo but required an extra round. We decided to go to the OHSU Knight Cancer Institute for a second opinion. While the setting was much larger and a bit more hectic than the small office we had first visited, we felt comfortable and confident with the staff that we met and felt their recommended BEP x 3 was the best option for us, and scheduled the start of round 1 for the end of January, which gave us a couple of weeks to prepare.
During that time we received a huge outpour of support from friends and family. We had deliveries and drop-offs daily. I was lucky enough to be connected by friends and co-workers to other survivors. One gentleman, who had a near identical journey with TC, was now 10+ years in remission. His and other perspectives from survivors that I was able to openly speak with made a huge difference in my preparedness, and led me to the following grounding principles
- Have a focus / plan going into the day
- Every day is unique
- Move your body
- Have something to look forward to
I began adjusting aspects of my diet to better accommodate my routine, including switching from bulletproof coffee every morning to a Bulletproof non-coffee latte.
- Hot water (filtered) – 2 cups
- Grass-fed butter (or ghee) – 2 tablespoons
- MCT oil (prefer C8 only) – 2 tablespoons
- Vanilla powder – 1 teaspoon
- Pink Himalayan salt – Pinch
- Stevia – Pinch
The start of round 1 came quickly. Katie drove as I finished my non-coffee Bulletfproof (grass fed butter, C8 MCT Oil, coconut milk, vanilla) and as my mind raced through a million topics and the lingering questions that had been in my mind for weeks:
- What was this going to feel like?
- Was I going to be the same person through these 9+ weeks?
- How can I best help Katie through through the pregnancy of our daughter and being the parent of a toddler?
As we made our way onto the oncology floor of OHSU’s Health and Healing Center, I told myself “This is it. This treatment will end it.”
Day 1 was LONG, and Katie stayed by my side for the entire day while a friend watched Everett. Chemo didn’t seem to feel like much, but I knew I was pumped full of medications to make that happen. I remember being mentally tired, but physically felt great. So good in fact that I put together our new bed frame after we got home, knowing that my energy would only decline through treatment and wanting to be as comfortable as possible. Getting through that first day felt like half the battle but I knew that I still had a fight ahead of me.
After the whirlwind of Bryston’s cancer diagnosis and surgery we jumped right back into normal life. October was a really busy month for us- we found out that I was pregnant, I traveled with Everett to visit my sister and brother-in-law in Virginia, and we all traveled to San Francisco for a friend’s wedding. Bryston also had his first blood work to check for tumor markers in October and everything had gone back down to normal range, this was great news! Bryston was now going to start on a surveillance protocol and would get regular scans and blood work to make sure that there was no recurrence of the cancer. After his diagnosis, Bryston really started to focus on his diet and exercise routine. He started sticking to a pretty strict Ketogenic diet and was feeling really great doing intermittent fasting with Bulletproof coffee. He also started swimming and was getting into a technique called total immersion swimming. Overall it felt like this was the push that he needed to get back into his health and he was losing weight and feeling great. At the same time I was in the throws of the first trimester (this time with a two year old to take care of!) and I wasn’t feeling the greatest. Going into the holidays I was finally feeling better and we headed to Southern California to celebrate Christmas.
Just before leaving for California, Bryston had his first surveillance scans but he wouldn’t have his appointment to review them until after the new year. While we were in California he received a call from his urologist’s office because he hadn’t had time to get his blood work done before leaving and they were calling to make sure they would have the results before his appointment. This was my first red flag. Bryston got his blood work done immediately after we returned from California and still had a few days before his appointment. My second red flag came when no one called to tell us that everything was normal and cancel his in person appointment- that’s what they did in October and it didn’t make sense that they would want him to come in if it was nothing. I kept questioning Bryston, asking if he knew why they would want to see him in person and he just assumed it was normal. I didn’t think it was normal.
My suspicions were confirmed when he received a call from “his oncologist’s office” on the morning of his appointment with the urologist. Until that point he didn’t have an oncologist. Because his cancer had been treated surgically his care was being managed by the urologist as long as his blood work and scans were normal. That morning we learned that his CT scan showed a mass on an abdominal lymph node and that his tumor markers were elevated again. This meant that although it had seemed like the cancer was confined to the testicle, a few cells had already spread and those little embryonal carcinoma cells worked quickly.
This was not the news that we wanted to hear in the first week of January. We had been so confident that we were going into the new year and putting testicular cancer behind us. Instead we spent the next week meeting with oncologists, freezing sperm, and deciding on a treatment plan. Once again Bryston’s coworkers were incredibly supportive and we were very lucky that Bryston’s company offers amazing short term disability benefits. I want to make sure to take a moment to say how incredibly lucky we felt to be able to only focus on Bryston’s health during that time- we didn’t have to worry about his job or about finances and that was an incredible weight off of our shoulders.
As soon as we found out that the cancer was back I was thrown back into research mode and was very happy to find some great groups on Facebook that really helped us to understand the treatment options and get an idea of how this whole thing would go. If there is one good thing about testicular cancer, it is that there is a standard treatment protocol and it has a very high success rate. After meeting with two oncologists we had the choice between a chemo regimen called EPx4 or BEPx3 the difference between the two is a drug called Bleomycin which can have some nasty side effects but is very effective and means that treatment takes a total of 9 weeks (3 rounds of 3 weeks) instead of 12 weeks (4 rounds of 3 weeks) with just the EP. Bryston decided to do BEPx3 at OHSU’s Knight Cancer Institute.
On January 23rd, 2017 we once again left Everett with a friend and drove across the Ross Island Bridge to the OHSU Center for Health and Healing for Bryston’s first day of chemo. I can vividly remember the night before he started chemo- we stayed up late talking and crying and I told him that he was not allowed to have any funny business! No weird reactions or infections! Of course I knew that he wouldn’t be able to control those things, but I wanted to set some ground rules. The only thing that I really remember from the first day of chemo is that we assembled our new bed frame when we got back home that day. The fact that he was able to do something so normal made me feel like everything would be okay. We still had a fight ahead of us, but we made it through day one.