How does chemo fit into my treatment plan?

Diagnosed: May 2017

Stage: IV

Type: Colon cancer, liver metastases

My name is Jessica, and my husband Will was diagnosed with Stage 4 colorectal cancer (CRC) in May 2017 when he was 48 and our kids were 7 and 10. Will developed a sharp pain in his side on a Sunday night and saw his doctor Monday morning. His bilirubin was 2.0 and his doctor sent him for an ultrasound, thinking it was gallstones. OMG! Gallstones! How terrifying! After the ultrasound, Will called to tell me that the tech said his gallbladder was fine but his liver was covered in masses. I thought I would break into a thousand pieces. For the next week, while no one used the word ‘cancer,’ I made appointments at [two cancer centers]; Will had a colonoscopy, CT scan, and biopsy- confirming Stage 4 CRC with “innumerable metastases to the liver.” Our oncologist told us Will needed “chemo for life,” which would give him maybe as much as a year to 18 months. The scans showed every slice of liver was covered- over 100 tumors… and the salty taste in the back of Will’s throat was the beginning of liver failure. 

He scheduled port placement two days later and Will’s first chemo three days after that. I asked the oncologist how Will could be cured, and he shook his head. I pushed him, “Will walks back in your office in five years, cancer free. Tell me how he got there.” He sighed and said, “IF he had an extraordinary response to chemo and IF we add in either Vectibix or Avastin and he had an extraordinary response to them and then IF the tumors shrank in such a way as to clear a section of his liver and IF he could then have a liver resection…” he trailed off and looked at me. “You have to understand that with each ‘and IF’ the window gets smaller and, for your husband, there are too many Ifs and the window is closed.”

I don’t say this to blast an excellent oncologist, who probably saved Will’s life by convincing us to cancel our [other cancer center] appointment so Will could start chemo immediately… but I think many oncologists veer away from offering hope because they’re scared of offering “false hope.” Hope is essential. Any person diagnosed with any cancer has a chance at beating it. You never know if you’re going to be the person with the astounding response to chemo or who finds just the right trial at just the right time. 

I obsessively researched “How to cure Stage 4 CRC” – frozen lemons, special salads, soursop, etc. I ended up with seven single spaced pages and then I set out to disprove each item. Anything I couldn’t disprove, that had real science behind it, we put Will on (Fucoidan+AHCC, Resveratrol, Theracurmin, Milk Thistle, Beta Glucan, low dose aspirin, Vitamin D, InflamAway). We also switched to a diet that was anti-inflammatory, anti-glycemic, vegan + fish, changed his sleep patterns so he slept “during the dark hours,” stopped watching action movies (too much cortisol) and only watched comedies (to release oxytocin.) The books I found helpful were The End of Illness, Integrative Oncology, Radical Remission, Being Mortal, Complications, Healing Foods and Love, Medicine and Miracles. I was so lucky to find wonderful Tom Marsilje’s blog, The Adventures of Living Terminally Optimistic, and through him, to find COLONTOWN.

Will’s first scans showed a 70% reduction and we were excited to meet with a surgeon, but our oncologist said, “No one who started with your volume of disease in their liver has ever had successful surgery.” At our second opinion appointment we heard the same thing. But our third appointment meeting at [another cancer center] was completely different – the surgeon took Will on as a patient and immediately sent us to see a wonderful liver surgeon. When I told him what our previous doctor had said, this surgeon told me there just wasn’t recent enough data to know but “if that’s true, then maybe your husband will be the first!” Will’s tumors continued to shrink, and the […] surgeons discussed surgery at every scan. Finally, Will had a combined liver and colon resection in January 2018. He had 6 rounds of “clean up” chemo after but since the pathology showed the removed liver tumors were necrotic, his surgeon considered him NED after the surgery. 

He just had his most recent scans last Monday, October 12, 2020, and he’s now been NED for 2 years and 9 months!!I know we got incredibly lucky; I know that we didn’t “do” this. In some ways, I can’t make sense of it, but I’d like to share a few things I learned along the way:

1. Your oncologist is WAY more than just a prescriber of chemo. You need to find someone you can really communicate with, someone who listens to and fights for you.
2. You deserve to feel as good as humanly possibly while you’re going through chemo and feeling better will aid you in your fight. See a nutritionist, an acupuncturist, a palliative care doctor, whatever you need. Don’t assume that because you’re on chemo, of course you’re going to feel terrible. Keep advocating for yourself.
3. “Not operable” means “Not operable right now.” Nobody knows how you will respond to treatment. We always tried to have back-up plans for our back-up plans. Will only had 4 mutations, and none were actionable, so we didn’t ever have any great trials in our back pocket- but I would ask our doctor what the next step would be if the chemo stopped working tomorrow, and I always tried to show up with a couple of new trials to chat about.
4. Educate yourself. This not only empowers you, but it affects the way medical folks interact with you. I found this to be especially helpful in the ICU after Will’s surgery.
5. This is obvious, but I have really recognized that life is finite and we have no idea when ours will end. I’m learning to embrace the NOW, to love that “this moment” Will is healthy, “this moment” we are all together. Will is a great protector of his privacy, not from all of you wonderful people but from the powers that be at Facebook, so I can’t send photos of our loving family. BUT I can send these pics of Scout, the husky that we adopted once Will was out of treatment.