I’m still trying to figure out this post-chemo lifestyle. I’ve recaptured many aspects of my pre-cancer life, but there’s also a sense of blissful ignorance that will never return.

As we approached October, my brain started to go on high alert, as that was the month I was diagnosed. I kept thinking about all of the anniversaries from October through December: diagnostic scans, blood draws, surgery… I had to remind myself to dwell in gratitude not trauma. Each anniversary I considered writing a post, but I couldn’t bring myself to do it. I think I figured if I allowed myself to reflect too much it would drag me down.

It’s the new year, so I am forcing myself to do some reflection and updating. I have had quite a few areas of re-entry into “normal” life. I’ll share them in a list.

  1. Food! Glorious food! I finally have my taste back and my tongue looks relatively normal for someone who has always had a geographic tongue. My favorites are starting to taste like I remember them. I’m quite grateful for that. But tbh, there is that part of me that wishes I didn’t like food as much again, bc I fall into our society’s lies of “losing weight is always good.” Good thing I know that putting myself on a liquid diet is not actually a healthy choice.

  2. Driving Miss Colettey. I say Colettey because my little dude does not have quite the social life that Colette does. In late October, I ventured out driving despite my neuropathy. I can feel things enough to drive, but movement and pressure does intensify the burning and tingling. I have resumed about 90% my previous driving responsibilities

  3. Appointments. No, I’m not appointing a federal cabinet or judges, I’m making and taking myself and the kids to all the appointments now. Eye doctor, Loeys-Dietz monitoring scans, cardiologist, oncology scans and follow ups, blood draws, dentist, orthodontist, primary doc, acupuncture, physical therapy. All the things.

  4. Neuropathy. The progress: I am driving and opening cans and bottles and most packaging on my own now. That’s the only mark of progress I can really say. I’m not sure if my symptoms have improved or if I’ve just learned how to do these things without full feeling in my fingertips and feet. My hands, feet, fingers, and toes have a constant baseline of a tingling, burning, and numbness. Those sensations intensify with use. For example, my fingertips are on fire after typing this far into the update. The best way to describe the feeling is when your hand or foot falls asleep, and it’s waking up. That tingling that kind of feels grainy and you want to stomp your foot or slam your hands to get them to wake up…that’s the constant baseline. I have been trying electric stimulation and laser therapy, but I can’t say I’ve seen much improvement. I tried gabapentin, but my body was not a fan. At this point, I do some light massage and take Tylenol to help me fall asleep. We shall see if I see any improvement. But I am learning to live with it. I’ll take neuropathy over cancer.

  5. Travel. I had my 3ish month post-chemo follow-up on November 5th to make sure my immune system was back up to snuff for travel. On November 16th, the LaCour Four took off to Costa Rica. I chose Costa Rica as our first post-chemo travel destination, because we had been there as a family in 2016 and it was one of my favorite vacations. This time did not disappoint. I’ll link to that report here…when I write it!

  6. Surveillance. I’m trying to figure out how to not feel paralyzed between follow up appointments and scans. I tend to want to hibernate and hide when I am anticipating something I don’t have much control over or information about. Between currently getting baseline scans to see if my vascular system is showing any signs of Loeys-Dietz effects and oncology follow-ups with bloodwork every 3mos and follow-ups with scans and bloodwork every 6mos, my psyche wants me to freeze until I get more information. It is real work for me to lean into living the daily routine and into following through with passion projects. The instinct to numb out, space out, or to distract myself with the mundane is strong.

  7. Carpe Diem. There is a part of me that feels like I should be on the other side of this living my best life. Not sweating the little things, etc… I can pressure myself into being a bit more daring by saying, “I made it through chemo. I can do this,” whatever “this” may be. But that also doesn’t feel authentic to how I feel on this side of things. I still feel pretty beaten down by the past year. Yes, I survived. I went through a lot. People say they admire my strength or they are proud of me or whatever the thing is to say to someone who is done with chemo, hopefully forever. Internally though, I don’t have some sort of “Damn girl, you did that,” monologue. I have a “Wow, that was worse than I realized it was while I was going through it. I’m glad that’s over. For now. Forever. Hopefully. Man, I’m exhausted from all of that. I’m likely traumatized, and I have no idea how to really process it,” monologue. So maybe I’ll get to that “carpe diem” phase or that “empowered survivor” phase, but I’d say for now it’s more of a “get yourself out of bed and do something today” phase.

So that’s where I am. I have one more MRA to get full results and a follow-up with my cardiologist to discuss what treatment and monitoring for Loeys-Dietz symptoms will be. I have my oncology follow up with bloodwork and CTs on February 6th. I guess that means I better get those appointments scheduled…

Onward.