Whiplash

This past week was one of the hardest since the diagnosis. After leaving the Mayo on the 10th our sights set on a hepatic artery infusion pump were dimmed. This was because the Mayo confirmed metastasis to his peritoneum as well as a small node in his lung. While they assured us the lung node would be obliterated with the chernobyl-like chemo, the metastasis to his peritoneum was disappointing news. If he had cancer only one other place, surgery could have been an option but because it is widespread surgery would not help. But we remain committed to exploring every possibility and staying hopeful.

The Mayo appointment also allowed Phillip to be referred to their Integrative Medicine Oncologist. I have been researching other approaches to combatting cancer and am getting a little witchy. There is a lot of evidence to support the use of cannabis and mushrooms. I recently bought the book, A Rebel's Apothecary by Jenny Sansouci, and it details her father's battle with pancreatic cancer and how he has a regimen of mushrooms he takes every day to help minimize the chemo effects (he is on FOLFOX too). Notably, cannabis is also a first line of defense for cancer in other countries around the world. We are looking forward to Phillip's appointment with the Integrative team at the Mayo and are curious to hear their recommendations to help us manage this better.

Lately, I have been a mess. Phillip is incredible, and somehow, even while facing his own diagnosis, he’s been my rock. It’s hard to describe what it feels like to lean on someone who’s fighting something so enormous. He keeps telling me, "Kell, think of it this way - we are throwing a big party, and you are concerned about all the crumbs in the corner, but really, the big dog poo (liver cancer) in the middle of the room is what is going to ruin it." I appreciate his analogy and turn to it daily to muster energy for our plan of attack.

While we have been processing the news from the Mayo, Phillip's pain took a turn for the worse at the beginning of the past week. It seemed as though he had regressed to early June when the pain was intense, he was "cangry" (cancer angry) and sleeping nearly all day. Nothing had changed so what had triggered this!? Why are we back to this point? Due to the pain, he was not eating and lost nine pounds that he could not afford to lose. Watching that kind of weight drop off someone you love is terrifying. This unexpected dip in his trajectory has been not just physically draining for him, but emotionally crippling as a caregiver. There is such a steep learning curve to cancer and we had no idea if this was expected, if he should go to the ER or how to manage this setback. After some discussions, Phillip went to MN Oncology on Thursday for some labs to determine if anything alarming was happening. The blood work results indicated nothing unusual except he is extremely deficient in iron.

The good news: Phillip is doing a lot better and feels like himself again and is the guy we all love. We figured out that the pain spike was caused by a 36-hour delay in putting on his new pain patch. Once that was corrected, he bounced back. Lesson learned - do not miss scheduled medication.

Still, this past week was a tough one. I found myself wishing for a crystal ball, just something to help us see the dips coming so we could better brace ourselves. The mental whiplash of watching him crash and then come back was like being on a rollercoaster, blindfolded... and backwards. In those moments of uncertainty, we leaned into our happy place. At night, we did the only thing two people in our shoes could do: we watched Ted Lasso. Because when life is scary, sometimes the best medicine is British charm, buttery biscuits, and a coach who believes in everything.