When the oncologist is happy, I am happy.
I am doing extraordinarily well on the Zanubrutinib.
The only real issue I'm encountering is that I'm struggling to stay fully hydrated - despite drinking 60+ ounces of water with at least one serving of rehydrating powder per day. I'll make some adjustments and see whether my rehydration efforts work during my September medical week.
More importantly, it appears that I will be able to kick the CAR-T can down the road for at least another year - maybe longer.
My oncologist mentioned that there is some new research that people with my profile are seeing progression-free survival up to 7 years (currently).
In the research I have easy access to (eg. - I Googled it this morning) - the majority of people with my profile are still in progression-free survival and doing well at the 36-month mark. That research is about a year old. Hopefully, there will be another patient-centered webinar update soon.
The rope holding the sword over my head just got reinforced.
It has been challenging to make decisions about my life much past the bi-monthly oncology appointments.
For the first time since this whole journey started, I feel like I can start designing and pursuing my new normal. How do I want my life to look over the next few years?
I have to consider that I don't have the stamina (mental or physical) I used to. I'm also immunocompromised. From looking at my journals over the past year, it appears that those variables won't change anytime soon. I need to be OK with that.
This still leaves a decent-sized list of things I can do - as long as I pace myself and remember to rest before I exhaust myself. (I'm working on the pacing and resting bit - there's decades of deprogramming to do.)
I've been busy since the last update:
- I talked to the publisher of my last book, Change in 4D, and had a developmental editor assigned. In June, I started writing book 2. Hence the silence on the blog - all of my writing energy has been going towards the book. My goal is to get something resembling a full first draft by the time I talk to the editor again in mid-August.
- I've been painting and am currently focused on learning watercolor. My Instagram will have more frequent updates showing what I'm up to. I even submitted a painting to the Artist Network Annual Competition - more to break the "I'm not good enough at this" belief than anything else.
- I'm getting out of the house. Since the last update, I've been to the Outer Banks with my family and to the Shenandoah Art Destination in Lexington, VA with friends for an art retreat. Highly recommend Shenandoah Art Destination - beautiful rooms and property, amazing food, and excellent art instruction. Jan-Willem helped me resolve some issues with my watercolor practice. I plan to go back.
- I finished A Fresh Chapter's Ignite program. This program was one of the best facilitated multi-week online programs I've encountered. A Fresh Chapter does a brilliant job of taking important skills and re-contextualizing them within the cancer journey. They also have shorter workshops. I highly recommend their Storytelling for Impact session. Their programs are open to those in active treatment, survivors and caregivers.
- Finally, I made a bunch of crochet hats for charity. Crochet is my mindless "I'm too tired to think but not so tired I have to be horizontal" activity.
My first priority for the remainder of the year is to get the book written and ready for publication. I'm targeting mid 2024; but I'm holding that target lightly. I have about 2 hours per day, 4 days per week where I have the stamina to do heavy intellectual lifting.
Art has served as a way to exercise my long-neglected right side of my brain. I seem to have more stamina for painting, though it took me a few days to recover from my recent art retreat.
Otherwise, I'm still practicing yoga and walking regularly.
On the docket for the next 2 months, beyond the book and painting and exercise:
- Another trip to the Outer Banks, this time with Ryan and one of his sisters.
- An attempt at paddleboarding, supervised by a friend in a canoe.
- A trip to Pittsburgh to visit friends.
- A birthday trip with Ryan (location TBD).
- I might even get out on the golf course this year ;)
I have full range of motion on my (chemo) port side and clearance from the oncologist. All travel is within single day driving distance.
Wish me luck on my semi-athletic pursuits.