Renee Gentzel

For this chemo, I’d like to honor four individuals in the public eye that have trod the cancer road before me. I’ve admired them for their honorable conduct as well as their openness in sharing their stories with others.

(Skip to the bottom for those that would like to know the nitty-gritty on my potential future paths.)

Ruth Bader Ginsburg As the non-notorious RCG, I’d like to call out THE NOTORIOUS RBG! Yes, the one, the only, Ruth Bader Ginsburg is one of my favorite role models. Yes, she has been a top-notch lawyer and is a Supreme Court Justice, with a hard-core work ethic, but the relationships she’s had in her life I’ve admired more. The love and support of her successful, funny, hell-of-a-cook husband – they supported each other through sickness and health, success and failure, and raised a beautiful family prior to his passing. This left-wing liberal was best friends with the conservative Antonin Gregory Scalia, demonstrating how respect for a person can rise above any differences in political viewpoints. AND, to top off the achievements of this Super Woman (she works out daily! seriously- planks and weights), she’s beat cancer – not once, not twice, but 4 times!! Her first was colon cancer. I would feel amazing to have accomplished even a 10th of what she has done. Highly recommend the documentary on her life that came out in 2018 (thanks for screening it last year, Danette!).

Alex Trebek He’s been a mainstay from my childhood, a fixture in my life. Like everyone, I love trying to answer all the Jeopardy questions. What I admire about him is the grace that he has displayed during his pancreatic cancer journey. He doesn’t want pity or sadness, and is focused on being productive at work and at home. He has accepted what he has, faced it head-on, appreciates the well-wishes, but isn’t letting cancer change who he is. He is open and honest to prepare others for times when he may be ill, and to inform others about this disease. I find myself resonating with that approach.

Scott G Riddle You may not recognize this name, but this individual has a public blog that has documented his journey with colon cancer (see link below). He is considered ‘young’, as I am, to have the disease (funny how you’re ‘young’ if you’re under 50 and get cancer, but ‘geriatric’ if you’re pregnant at age 35 or older…). He’s in his mid-to-late 30s, like me, and has a family with young children. He’s in Australia, and is trying to live his best life. My favorite post of his is titled, “Living with terminal velocity.” In it, he talks about how can “.. one not just survive, but thrive ? How do you still maintain a life with real ‘velocity’ when you’re likely terminal.” And with more cancers becoming a type of chronic illness, with a lot of time provided to the patient if not quite a full cure, how can we prevent cancer from encompassing all of that time?

https://scottgriddle.com/

Tom Marsilje A “Lion” in the Colontown community, this Novartis cancer researcher was diagnosed with colorectal cancer on the same day that a treatment he helped make was announced as a breakthrough therapy for lung cancer back in 2012. Tom’s blog and presence in the patient/caregiver/physician community of Colontown has greatly influenced me on how I can combine my skills as a neuroscientist researcher with my real-world experience as a patient. His research and experimentation with his treatment convinced me to try fasting during chemo to prevent side effects – and it has worked! Because of him, I’m also now an active presence in Colontown. I’m helping them pave the way for acceptance of icing in the greater cancer community to prevent chemo-induced neuropathy. We have written a white paper/letter that we’ll be communicating to organizations – from local clinics, to other CRC organizations, to the National Cancer Institute and more. We have polled our community to demonstrate how this technique has helped numerous patients (30+ and growing fast), with consistent and dramatic effects, particularly on acute symptoms – anyone who has tried this technique from the beginning of chemo has had either no or very mild neuropathy. We hope this editorial paper will spur clinical trials to be created to study icing and confirm it from a rigorous scientific standpoint, and we hope icing will become a standard of care with chemo treatments that can cause neuropathy. A big salute to Tom, for his many contributions to cancer. He passed in 2017, but his presence remains, and I hope to do my part in carrying on his legacy.

https://innovation.org/about-us/innovation-faces/researcher-profiles/tom-marsilje

HERE’S THE NITTY GRITTY:

Chemo #4 went like all the others- icing and fasting, no cold sensitivity, no neuropathy, no nausea. I’m gaining weight – up to the 120s now! Hope to hit 125 lbs, which was my pre-surgical weight. Able to walk, lift weights, etc. My platelets were low, so I don’t want to do anything strenuous, but my red blood cells and white blood cells bounced into the normal range this time! All good news.

Now to detail the paths my cancer could take. My primary onc and I did a little bit of game-planning, but the following is the preliminary plan based on the outcome of the next staging to be performed in late February:

1. Best outcome: Tumors shrink or are stable! Action: Continue chemo as is and check again in 3 months. Surgery/radiation would be considered at the 6 month mark, or, if no evidence of disease is detected then, just monitoring would continue, potentially with maintenance chemo.
2. Next best outcome: Lymph tumors grow, indicating that the FOLFOX isn’t effective on my tumor type. Action: Surgery/radiation would be considered to get them out!
3. Not-the-best outcome: Additional metastases are detected in different areas. Action: FOLFOX FAIL! Pivot to a second-line treatment, like the BEACON regiment or FOLFIRI (yes, it’s pronounced FOL-FURY…. my cancer treatments have the most bad-ass names…). Nip those suckers in the bud!