Today marks day +63. This has been the longest summer on record and not the good kind from childhood filled with swimming and bike rides. This summer has been chemotherapy and doctors appointments, disappointment and breakups, rest and recovery. It’s been an emotional and tumultuous summer from start to finish.
I return to work in two weeks and find myself looking back in reflection, unable to wholly remember the month I was in the hospital or the following month of recovery at home. Those days were marked by sheer exhaustion and dependency on my loved ones. As an independent woman, that was the toughest pill to swallow. No amount of will would change the necessity of others for me to just exist.
Feeling a bit better and stronger now, there’s a small part of me looking forward to the additional structure and routine of a work day. My body has clear boundaries on stamina and endurance so it will be a learning curve to understand my limits when I add work back into the mix.
As I look forward to the fall, I realize how far I’ve come.
- I reached 5,500 steps one day.
- I, seemingly overnight, now closely resemble a chia pet or a baby chick with the hair growth on my head.
- I’m able once again to water my own plants and vacuum my living room.
- Emptying the dishwasher does not leave me winded.
- A few nights I’ve switched from using my rollator exclusively to getting around solidly with a cane.
I’m still in the thick of it and I continue to be emotionally devastated by the bad days, but I have friends who remind me it’s all temporary. I’m playing the long game in life — work, love, family and of course, health. I’m going through pain now for the promise of a better future.
Life’s simple pleasures
My father recently celebrated his 71st birthday. We went to a restaurant with a glorious covered patio on one of those perfect Cleveland summer nights. It was mid 70s with cloud cover and sunshine taking turns in equal measure. I felt safe being outdoors on the small patio and was surrounded by people I love. The waiter offered to bring my non-alcoholic drink in a frosted martini glass for ambiance, and I enthusiastically accepted.
It’s been well over a year since I was in a restaurant. The pure joy of being waited on, holding a menu, a frosted glass from the bar, dining al fresco and delicious food was so rejuvenating. I don’t think I’ll ever take a dinner out at a restaurant for granted ever again.
My love of mobility aids
I’m still using my mobility aids — I love them and feel lucky to have them. They increase safety and allow me to do more with less energy. I have a rollator on the first floor, one on the second floor and a slew of canes. When I go to appointments at the cancer center, I use a wheelchair as to not ruin the rest of the day. Who wants to spend their energy going from labs to doctors appointments?
If you’re struggling with using a mobility aid, I invite you to rethink your perception of using an assistive device. They help keep us mobile. Check your pride at the door and get moving.
My workouts look a wee bit different these days. I’ve had two visits a week of in-home physical therapy for the last several months. I do toe raises, bird dog on all fours, walk sideways at my kitchen counter and am actively trying to improve function, muscle tone and stamina.
Movement is movement, it all counts.
A new normal
I have no idea what my new normal is. I don’t know what to expect week over week. In the coming months I have a full MRI including my brain, cervical and thoracic spine. I have monthly checkups at the cancer center with bloodwork and stay in touch with my transplant nurse.
It’s all new. There’s no planning. And I have to be fine with that.