My July 2023 Update

It’s 8:00 AM, July 3rd, 2023. The last few mornings have been rainy, so I’ve been sleeping in, but today it’s back to routine. The routine for the last few weeks has been to sit outside with my caffeine of choice (Celsius from a powder, not can) in a coffee mug while wearing my big fluffy white robe, and watching the sprinkler as it waters a patch of lawn we’re desperately trying to regrow. I contemplate survivorship and what (or even how) to write about it here. For some reason, today feels like the day to try and tackle this impossible task. 

It’s been 4 months since I last updated you all. There have been some really cool, fulfilling, and meaningful events I’ve attended/experienced (which I’ll highlight below). But mostly survivorship is attempting to balance living a healthy and meaningful lifestyle, while actively mourning the losses along the way. Just your typical Monday Morning stuff you know? 

Disney World – April 2023 

Mitch and I had always talked about going to Disney World when I was done with active treatment, but there always seemed to be a reason not to. At first it was cost. Then it was timing, because we didn’t want to go when it was too hot and I couldn’t take too much time off work. There were also the concerns of stopping oral chemo and starting Verzenio. What if we paid all this money and then I was stuck attached to a toilet or in the hotel room with intense nausea because of Verzenio side effects? Wouldn’t it be more responsible to save money and spend Spring Break at home adjusting to a new medication, rather than gallivanting around the country having a magical time? 

Sure. All of that is true and then some, but at what point do I say enough and put myself first? Schedule in time to just completely disassociate with reality and immerse myself in a magical land where everything is overpriced, everyone is exhausted, but the heart of it is to make magical moments and memories we will remember forever.

I don’t know what overcame me when I booked our Disney vacation. To be honest, grandma had only recently passed and I was a mess. A year that I had thought was going to be filled with healing and becoming the healthiest version of myself was completely lost to immense grief and sorrow. I was barely holding on. I needed a reminder of who I was to my core and what I believed in, because I was a sad, lost panda. 

Days before we were scheduled to leave, there were a few issues at work that left me reeling in anger and worried if I’d even have a job to come home to. While I firmly believed what I did and what I was standing for was correct and backed in science, I was still worried about what the outcome would be. Because unless you’ve been living under a rock these last few years, science isn’t always listened to. 

Honestly, being reunited with Mickey Mouse at Magic Kingdom was the first time in months I could say I felt pure joy again. Then at Hollywood Studios, watching Fantasmic while filling my face with loads of overpriced junk food, I remembered who I was and what I stood for. While Disney is filled to the brim with ways to escape reality, it’s the pure everyday joy and love that I believe in. Any moment in life can be magical, if you slow down enough and allow it to be. 

May 2023–Verzenio and Nebraska Cancer Coalition

Coming home refreshed and with a bit of myself re-found, I began on Verzenio which led to a very fast reminder that I’m still a cancer patient. Taking Verzenio quickly dropped a lot of my CBC numbers, which I can always feel physically and hate. When I’m neutropenic, I get sick easier and am exhausted by just living every day life. It puts me into a state of hypervigilance to stay healthy and with energy.

It’s exhausting having to think through and plan every single action, in order to not over do it. It’s exhausting having to think through and plan every single thing I consume, in order to ensure I’m setting my body up for the best chance at success. I can’t just have a drink or stay up extra late at night scrolling on my phone, because I’m paying for those choices for days to come. 

Having to plan life to that extent, just to survive in a predominately non-cancer world—it all starts to feel obsessive. Muggles tempt me with fun times and mock my obsessive cleaning. Eventually I give in to peer pressure, let my guard down just a little bit, and have a great time loving it up.

Then bam, I’m whacked with some weird sickness that adults “normally don’t get” to remind me that it’s not obsessive to give a shit about yourself, and that when you’re a cancer patient out in the wild very few people will truly understand the lengths you have to go to to stay healthy and happy. It’s the Spoon Theory in real time and if you don’t get the reference, consider yourself beyond lucky while you look it up. 
With work drama still ensuing and Verzenio doing it’s best to keep me down, I was still able to live out a cancer survivor dream of mine and speak on a panel at a conference. The conference was put on by the Nebraska Cancer Coalition. It was about how COVID affected cancer care and was geared towards providers to earn continuing education. I was approached to be on a patient panel and jumped at the opportunity.

What those pictures don’t do a good job of is showing how sick I was at the conference. I had been feeling really tired since returning from Disney, but thought it was just the Verzenio messing with me. Then I started to develop a rash on my finger. I didn’t think much of it. A rash on one finger isn’t a big deal after you had and conquered a 10 centimeter tumor.

The rash slowly spread to my whole hand. Then my other hand. A couple calls/emails with oncology and dermatology with no clear answer, and still feeling quite run down. The day of the conference snuck up on me while the rash spread to my feet. Feeling absolutely miserable and worried I was contagious, I went to the conference only after being given the go ahead by my doctors. While I never did get a definitive diagnosis because I never “had a fever,” I still firmly believe it was actually Hand, Foot and Mouth Disease.

Official diagnosis aside, my body actually worked! I got better within a week and don’t think I got anyone else sick. While it sure put a damper on things (like sickness often does), I think I still did an okay job educating the providers at the conference on what it’s like being an AYA cancer patient during COVID and about our unique needs. 

I say I did an “okay” job, because I don’t feel like I connected with the audience like I would have liked. I wasn’t the picture of cancer I think they were expecting and I kept it super real, doing my best to let them know what it truly is like to be a young adult in the cancer world. Mitch said I did great, but I don’t know. Either way I think I learned a lot about presenting on cancer and connecting with an audience in person, so it was a win and I hope to do it again some day.

Dose Reduction 

Rounding out the school year feeling like garbage physically and still riddled with leftover drama from April, I headed into my scheduled verzenio follow-up appointment at the end of May with a list of reasons why I thought a dose reduction was warranted. Just a highlight reel of that list: I could pretty much only keep down a very healthy diet of panera bagels and mcdonalds. Anything else I ate either made me super nauseous or sent me straight to the bathroom for hours on end. I was barely living, stuck in a world of no energy, flipping from bloated to diarrhea, and was miserable. Finally to top it all off my CBC remained all sorts of wonky. Enough was enough! More harm than good was happening here and I had it. What’s the point of staying alive without cancer, when there is no life or living being had? 

While it shouldn’t have been a surprise as she’s the most amazing doctor I’ve ever encountered both as a patient and professionally, Dr. Wells was on board before the words hardly left my mouth to do a dose reduction. Let me tell you I left her office elated and ready to kick off the summer! 

Kicking Off Summer

To officially begin summer we headed to Colorado to see friends (that have become family) and some family (by blood) as well. Able stayed back with a dog sitter, since a 10-hour car ride is too much for the old man.

While the devil drug 150mg Verzenio left my body, we did the things I truly enjoy with our friends. We went to a questionable roadie type carnival in Old Colorado City. We went on a cave tour. I explored my favorite town Manitou Springs with my trusty sidekick Oliver. I went thrifting with the girls while the boys got lost in the mountains for a few days. We ate a ton of delicious food and just spent time together with those we love the most. It was glorious. 

Coming back to Omaha, I was on a tight 2-day turnaround, this time headed to Kearney for the Nebraska School Health Conference. I was on the planning committee for the conference  and presenting a poster on utilizing QR codes in the high school health office. This translates to extra long days and I was nervous. Could I keep up? 

The answer was yes and no. I had a lot more energy than I had since starting Verzenio, but I also had caught a cold while in Colorado. Greatful it was just a run-of-the-mill cold and nothing more serious I did my best to power through the conference. 

The day of my poster presentation I had to do the unthinkable and go take a rest during the lunch break. Listening to my body and then finding my voice to request help was terrifying. I didn’t want to be seen as “a cancer kid,” but I couldn’t keep going at the pace I was going. 

Unsurprising to anyone but my irrational brain, nobody cared! The conference carried on. Lunch was still served. Raffle tickets were still sold. Other people stepped up and my absence for a quick 30-minute recharge was hardly noticed. Amazing how the world keeps turning and working! 

My poster was well received. There were lots of questions. Many people were taking photos to remind them of it and help them implement it in their office. It really helped remind me that I am still a nurse at heart who can and has made an impact on people when I continue to do what I’m best at, implementing systems and interventions to make lives better. 

Mary’s Place By The Sea 

When I came home from Kearney, I had another tight turn-around of only a few days, before I was off again. This time on a plane, then another plane, then a train, then an Uber, to make it to an amazing seaside retreat at Mary’s Place By The Sea. 

Mary’s Place By The Sea is an amazing 3 day/2 night retreat, run mostly by volunteers for women affected by any type of cancer. The women who run Mary’s Place plan out three days of relaxation, meals, and peace for the attendees so they can truly relax and start to heal from cancer.

It was quite honestly one of the most healing things I’ve ever done for myself and can not recommend it enough. It helped heal the trauma left behind from cancer, and also the grief I felt from the large hole in my heart after grandma passed. Connecting with other women, being cared for by other women, staying in a beautiful feminine home only a block from the ocean… it’s truly magical and healing.

Now As I Stand

As I’m recovering from surgery (a blog post for another day), I often find myself going back to Mary’s Place in my head. Biking the flat boardwalk on the perfect early morning with the sea salt breeze blowing in my hair, getting back to the house for breakfast and healing practices, before having a healthy lunch to fuel even more learning and healing in the afternoon. I was alone with myself, but yet not. Surrounded by love, acceptance and calm, to explore and heal the pain in my heart. Slowly starting to peel back the layers and connect with myself by listening and sharing. Hearing that I’m not alone in my struggles and we’re all just trying to do our best out here in this thing called survivorship that has no guidebook. It was the perfect end to my summer as the week after I got back I was due for surgery to try and physically heal some of the issues left behind by cancer treatment. (More on that next time)