One of the more interesting discoveries on this journey is that the typical way to get and stay healthy does not necessarily work for me anymore. Furthermore, there are phases in the journey and my goals, by necessity, have changed.
The main purpose behind my health activities is to maximize my quality of life and develop personal resilience for when I have to go into CAR-T.
So, what does supporting my health look like?
These days - it looks somewhat monkish.
- When thirsty - drink.
- When hungry - eat.
- When tired - sleep.
- When restless - move.
- When bored - get out of the house or start an activity.
- When distressed - talk to my therapist or someone in my support network.
It's basic and exactly what I need.
Early last year, as my enlarged spleen shrunk my stomach and tanked my appetite, my diet became - eat whatever you can digest.
Since I started on the Zanubrutinib, my spleen has quit reorganizing my insides, my appetite has returned, and my weight has climbed to a bit above normal.
I have moved beyond the "calories at all costs, eat what you can" stage. Eating like I did when I was in high school - cereal, Spaghetti-Os, Chef Boyardee, etc - was fun; but I'm glad I don't have to continue that diet.
However, just going to a standard "healthy" diet is not what I need. I need to be cautious around raw foods due to my dodgy immunity and occasional digestive issues.
I'm fortunate in that I'm a decent cook, come from a family that loves food, and am notorious for being an adventurous eater. I also live in a place with a wealth of delivery options. My partner is also a good cook.
If anything, now that I am feeling better, I'm struggling with some of the dietary restrictions. The oncologist cleared me for salads and raw fruits and veggies in January. I still can't convince him that I should also add sushi and raw oysters to my diet.
The American Cancer Society has an excellent book, What to Eat During Cancer Treatment, that has helped during this journey.
Otherwise, I do my best to follow the "eat real food, minimize processed things" mantra.
I also need to maintain a weight cushion for going into CAR-T. I suspect that the lymphodepleting chemo required for CAR-T prep and hospital food will do a number on my appetite.
After having spent the first half of last year struggling to eat, I'm happy to enjoy food again.
I've had to retire from my pursuit of stupid human tricks.
Powerlifting is out of the picture since I can't afford to get hurt. My low back hasn't been allowing me to pursue this activity anyway. Cancer, I think, has finally convinced me that it's time to hang up the barbell.
High Intensity Interval Training needs to be done very cautiously because I don't have the system resilience if I overdo it and recovery will take much longer.
As much as my ego would love to use this time to set fitness goals and new PRs - that approach is wildly inappropriate for me right now.
My fitness goals consist of being able to get off the floor, stay out of the hospital, and to prevent my family from having to wipe my butt for me.
If I'm training for anything - it is to be able to get through CAR-T and recovery with minimal drama.
None of this is particularly glamorous or something to stick on Instagram with an inspirational quote attached. And that's OK.
All of us are going to hit the point where being able to get up off the floor and wipe your own butt are going to be important fitness milestones. I just hit that point sooner than expected.
When I designed my "fitness regimen" for this part of my journey, I had the following requirements:
- It needs to be fun while I'm doing it. It's not in my best interest to do things that are only fun in retrospect. Don't have time for that.
- It needs to be safe. Parkour, axe throwing, trapeze, rock climbing, white-water paddleboarding, snowboarding, and the other stupid human tricks I enjoy are out for the foreseeable future. I can't afford to cut or hurt myself and I still have the port which could allow infection to get into my already dodgy blood-stream quickly.
- It needs to be easily scalable to accommodate both days where I feel awesome and days where I feel like garbage. Sadly, I'm not at a point where I can predict my energy on any given day and periodize workouts.
- It needs to accommodate variety. I find that I feel better when my life is more varied.
I've settled on yoga and walking as my two primary physical activities.
Yoga is easily scaled by time and type. On days I am really dragging, 30 minutes of restorative or yin yoga work well. I'm mostly using my daily yoga practice as a mental health tool anyway - so if my workout looks like me lying on the ground and staring at the ceiling, that is perfectly fine.
- Yoga4Cancer - Oncology yoga. Tari Prinster's book is an amazing resource for practicing yoga while in treatment or early recovery. Her book and workouts address the specific issues cancer patients have when choosing to practice.
- Yoga Ranger (Aprille Walker) - Yin, Restorative, Slower flows. Her workouts currently make up the majority of my practice days.
- Yoga with Adriene - Her 30-day journeys have helped me build stamina. The 2022 journey help me return to my full practice.
- Yoga with Kassandra - Higher intensity practices when I want them. My cousin reintroduced me to her. Kassandra is best for those who have already built some stamina post-treatment.
Walking, for me, is functional exercise and an excuse to get out of the house.
Walking now will help me keep walking during the more challenging portions of this program. Unless it is really crummy outside, I'm at least walking the dog 1/4 mile+ per day.
I scale this activity by time, miles, and elevation change. I also include stationary bike time as "walking" - using 3 bike miles = 1 walking mile.
The weather is improving here in the mid-Atlantic, so I expect to spend less time on the bike and more time outside.
A friend and I have been attending orienteering events in the area. Orienteering is a nice combination of hike + scavenger hunt in the woods. My friend does adventure races, many of which have a navigation component. This is great training for her and an excuse for me to get back on the trail.
I used to do trail maintenance on the Maryland section of the Appalachian Trail when I lived in Baltimore. When I moved back to Northern Virginia in 2007, I pursued other activities that didn't require a 90 minute+ drive each way and better accommodated a fast-paced career.
The Potomac Appalachian Trail Club started a Northern Virginia chapter (finally) since I last spent time with them. I enjoyed the event I attended last weekend - so I scheduled myself for an Intro to Trail Maintenance workshop to see whether I am up for the more strenuous activities involved in trail maintenance. I am publicly promising not to get involved with chainsaws this time ;)
As of this month, I have been cleared for golf and water sports (as long as I'm not trying to run Class III+ rapids). I'm planning to get to our local Top Golf at some point this month to test the swing. It will be nice to resume an activity Ryan and I share.
A chronic cancer diagnosis and the resulting identity shift necessitated some changes to my mental health support system and approach.
I have a full page of mental health resources, but the key changes I've made are:
- I changed therapists. My previous therapist was closing her practice and the diagnosis provided an excellent opportunity to find a therapist who has more expertise in end-of-life and critical diagnosis issues. This is proving to be a good call. I find that a good mental health professional provides perspective and valuable outside insight from someone who has no skin in my game.
- I'm taking advantage of cancer-specific resources. This includes retreats and support groups. I'm "fortunate" to have close family members who have also gone through this journey and serve as key members of my support network. I also have friends who are in the industry. Interestingly, I have met more fellow cancer journeyers outside of my local area. One of the things on my "to-do" list for this year is to get more involved in local activities.
- I'm focusing on activities that bring me joy. I want to right-size my relationship to lymphoma. Lymphoma is a variable I need to consider when I make decisions. It is not my identity. I can only do so much "cancer-world."
This year is all about finding and cultivating the things that bring me joy.
That pursuit, ultimately, is what supports my health, keeps me active, and helps me build resilience for the next major treatment.