tl;dr new treatment apparently working, lesions shrinking, Bob best husband.
Over the weekend, we were driving to get lunch in a neighborhood with heavy street construction. Orange barrels everywhere, restricted traffic lanes, etc. Bob was making a hard turn on to an angled street, navigating around construction barrels. There was a pedestrian just stepping into the crosswalk (which was somewhat protected because of the barrels); if we were in New York, it would be an entirely unremarkable situation of a car in the crosswalk at the same time as a pedestrian, but not threatening to run the person over.
But we weren’t in Manhattan, we were in Edina. The woman never had to break stride to accommodate our car. As she passed behind us, she slammed the back window with her hand. Bob immediately said, “That’s bullshit,” put the car in reverse, and started backing up. “What are you doing??” I asked. “I’m going to hit her,” Bob said. I started yelping “NO! NO! NO! NO! NO!” before I realized he was kidding about running over the woman, and was moving to allow a car to pull out of a parking space. Bob launching into an altercation would have been extremely off brand for him, but emotions are a bit frazzled around here, so who knows what’s possible.
(Yes, I know, the pedestrian was in the right. Totally. But it wasn’t a terrible error on Bob’s part, either; she was still on the sidewalk when he initiated the turn. Because of the construction, we were moving slowly and she had time to catch up to smack the car.)
Last Wednesday, I had my first scans at Mayo since starting this new treatment regime. Treatment plan #1 failed to prevent new lesions from forming. We learned that with Treatment plan #2, I have no new lesions, and known lesions are shrinking! This is amazing news. I was looking for more emotion from my oncologist, but he’s only concerned about whether we’re on the right track and should carry on with this plan. Yep, forge ahead!
He’s happy with my comprehensive treatment plan of Western medicine (Mayo), Eastern medicine (acupuncture), and what he’s categorized as mental health support (the energy healing). Plus the amazing chef-prepared organic food that arrives at our house weekly. I really can’t say enough superlatives about the impact this is having; I just don’t feel like eating a lot of the time – the cancer drugs make my mouth and throat extremely sensitive, eating hurts, and nothing really sounds good. I can’t imagine trying to think through and make decisions about what to make/order on delivery. Now, Bob can pull something out of the fridge, heat it up and put it in front of me, and I’ll eat it – and it’s all excellent, nourishing food that our chef is constantly revising, based on what I can tolerate (no spicy food anymore). She thinks about things that wouldn’t occur to me, like balancing different kinds of sodium across the dishes. This week almost all of the ingredients came from the St. Paul farmers’ market. She goes light on wheat flour, cane sugar, and dairy; when I’m not feeling great (or even when I am), these are my favorite food groups, but because I’ve got tasty food with healthy substitutions in my refrigerator, I’m not existing on a diet of pastries and ice cream. She’s a wizard at making up or adapting recipes to hit nutrition goals, without making us feel like we’re missing out on the good stuff.
As my Mayo oncologist says, he wishes all of his patients were able to have all the supplementary treatments and support I have. I know I’m very, very lucky to have the combination of financial resources (money), a network that can hook me up with people and practitioners (connections/access), and curiosity and tenacity (self-advocation). Being a bossy, white, insured, connected, upper middle class, educated woman living primarily in a progressive, urban area close to one of the premier medical institutions in the world all works in my favor. Not to mention having a devoted husband who makes all of this a billion times easier. I know my experience is, unfortunately, extremely rare. Unheard of. Luck plays a big part, too – I’ve landed with the right doctors pretty much my whole life. People seeking care in some of the same health systems have had very different experiences from mine. I don’t know how to understand my luck vs. theirs.
We met with the Palliative Care team at Mayo last week. I had always associated palliative care with end of life care, and was a little freaked out when it was suggested I meet with them. Turns out they help with anyone navigating serious illness. Very interesting to see the differences between the Mayo’s Integrated Health work and their Palliative Care department. There are some points of overlap; and overall, both departments are taking some alternative treatments/supports seriously. They push things like mindful meditation, stress and anxiety management, exercise and nutrition more than supplements or anything ingested that would have unknown/unstudied effects on the drugs they’re prescribing. Understandable. I still occasionally use things my team has not universally “approved”: mouth spray, THC seltzers. I am completely honest with my whole team about what I’m doing, regardless of whether I have their approval. Maybe what we learn from my experience can be useful for someone else. All of these “alternative” or complimentary treatments and supports were basically disregarded and dismissed from Western health care practices only a little while ago. I was amazed to learn that some of the Mayo palliative care nurses are performing Reiki (a form of energy healing; different from what I do, but in the same neighborhood) on patients who want it – we’re getting closer to more widespread acceptance and validation of alternative healing methods by Western medicine.
To be clear, though, I am in no way eschewing Western medicine for alternative medicine. I’m finding a balance that feels right for me, helps me feel pretty good physically, and quiets the screaming in my head. And it seems to be working.