(Originally published September 19, 2022)
My recent updates have been on LinkedIn and Facebook because (thankfully) there hasn't been much to say. I also frankly haven't had the attention span, patience, or energy to write much.
I'll admit that last week was nerve-wracking. I was feeling very run down and my abdomen had started aching - so I wasn't going to be surprised if it turned out that the medication had quit working and we needed to get more aggressive about CAR-T.
Thankfully, the Brukinsa/Zanubrutinib is working brilliantly. My numbers are where my oncologist wants them. I haven't seen him so happy. A happy oncologist is always good news.
Turns out I just ran myself down. I've been quite active over the past couple of months.
My partner and I took a road trip to Michigan so I could attend a fly-fishing workshop with Reeling and Healing. I'll write about that experience in a later post. Summary: It was fun and a confidence booster. I met some awesome people. North-central Michigan is pretty, and I hope to get back there soon.
Exercise - I've been doing 30+ minutes of yoga at least 5 days per week + a short, slow hike every couple of weeks with a friend. It's enough to keep the joints lubricated and for me to stay independent.
Emotional health - I have just transitioned therapists to one that specializes in the emotional issues around major illness. I'm seeing her weekly. Having an external perspective with no skin in the game really helps as I navigate this journey.
Intellectual activity - A healthy chunk of my time has been spent with the administrative detritus of being ill. Right now, I'm going through the Social Security Disability application process. Thank goodness the long-term disability company I am with has a service to help with all that. I'm also working with Medstar Georgetown Hospital to prep for CAR-T. The notes I take no longer make much sense to me when I reference them. It's weird. I've been taking as much support as I can get as I try to keep things together.
I am also spending time working on my first "art commission" - decorating 2 boxes for a friend of mine. In exchange, she is letting me use her Cricut machine.
The Cricut is a device that allows you to cut out very detailed shapes in an array of materials - sticker vinyl being my current material of choice. Picking out all of the pieces of vinyl from the cut outs is a shockingly messy process. I'm still finding random pieces of glitter vinyl stuck to carpet, furniture, socks...
What's been shocking about the art commission project, trying to learn something new, and my life in general, is just how much energy it takes to do something. It's like the 3 separate 16 oz cups I had - physical, mental, emotional - is down to 1 8 oz cup that needs to accommodate all of it.
If I am doing something really physical that day, such as hiking with my friend, I'm done for the day.
If I have to do things that require a lot of thought, such as administrative work or writing, that's the only thing I have the energy for.
If I am spending time with friends and family, that's it. Nothing else happens that day.
Once I'm done, I'm DONE - horizontal in bed.
I'm thankful I learned how to chunk out projects into really small actions - because that's how I need to function to get anything done these days.
I'm still figuring out how to pace myself. On the days I'm feeling energetic, I'm still prone to over-doing in an attempt to get it all in. I thought I was making progress by treating life as interval sprints :)
The last couple months have been focused on finishing some things I had started and addressing administrative tasks that I knew were going to happen this summer.
I learned that my capacity to take on obligations is very limited right now. My friends and family, of course, knew this long before I did. I am a slow learner.
I still have some things outstanding - thank you notes to friends that have donated to my Lymphoma Research Foundation fundraiser earlier this year, some blog posts, outreach to friends... Just know that I haven't forgotten, and I am incredibly grateful for all of the help and support I am receiving on this journey.