Dealing with uncertainty and preparing for leaving the hospital. - 9/22/25

Here are some more medical updates on my lung cancer journey...

This weekend was for resting and hoping the brain inflammation resolved with steroids, but I've only gotten weaker on the left side and yesterday I needed 2 people to pivot me into and out of bed from wheel chairs. I slept well but am still quite tired. I ordered 2 cups of coffee for breakfast and it has helped.  I'm typing this with my right hand only. Everything takes a lot of effort and is tiring, even thinking of what to type next.

I had my second cyber knife radiation treatment today, and my oncology team will meet and update me on the plans and my current progress on Tuesday.  One option is to discharge me to an acute rehabilitation hospital with 3 hours of PT and  OT a day, but they don't allow you to leave the facility to go to to medical appointments, so I would have to pause treatment which I don't want to do, obviously. I'll bring this up with my medical team, but it is an example of the kind of uncertainty I'm dealing with. My preference eventually is to be at  home and be independently mobil and rely on family and friends to transport me to appointments, but I'm too weak for that.  My physical status is similar to having a stroke as far as loss of motor control goes but we're hoping it is a temporary loss due to brain inflammation. The neurons are still alive, just not communicating well.

We are also considering the possibility that my motor control doesn't return and I'm permanently wheel chair bound and going through  cancer treatment... so much uncertainty.  The primary goal now is to deal effectively with my metastatic brain cancer which is the main focus of my next 2 weeks of medical treatment. We will probably stay in a wheelchair accessible hotel for a week or two after being released from the hospital to avoid having to go up 15 stairs to our apartment on the 2nd floor of our house, and Yas will take some time off to drive me to followup appointments.

The medicalplan is for me to continue with steroids for a while and see if my motor control returns, if it does then I'll taper down from the steroids over the next few weeks  and then start immunotherapy. If I don't get strength back, then there are other medications I can try, e.g. Avastin, or I can taper down and start Keytruda while being wheelchair bound.

I'm also doing a  lot of PT to strengthen muscles and neural pathways.  It is all pretty tiring, so I'll probably nap a lot. Yas learned how to help me transfer in and out of our wheelchair, with a little more strength I can do it by myself!

I had a nice day yesterday. Yas was here in early afternoon yesterday and my PT showed me how to navigate in my wheel chair with just my right arm and leg!! It was exciting to be wheel chair mobile! Yas went to a vocal session in the afternoon and Caitlin came to visit and we had a nice time.  I called Ryan and we had a nice chat. Spending time with my family is the best part of my day!  Caitlin went to Jiujitsu around 5 and Yas brought me sushi at 6:30. After dinner we did some exercises from the Positive Thinking book Caitlin bought for me. We each thought of three good things that happened that day. We'll keep doing it.  Thanks to Caitlin!

Yas and I had lunch together today and she accompanied me to the cyber knife treatment at 2, which was very relaxing, then we talked about possible discharge plans, medical transportation and insurance...I'm so lucky Yas married me 32 years ago and I have a soulmate to help me negotiate these life challenges! I'm also thankful for the support of my kids, Caitlin, Ryan, Shaye and my siblings, friends, neighbors, colleagues, and facebook friends!

My colleagues sent me a nice fruit care package.

Although my plan is to live as long as possible, ideally decades more, I realized today that my last moment of conscious awareness will very likely be similar to how I'm experiencing life right now, so I'm endeavoring to be fully present as much as I can every day and to appreciate this amazing gift of life especially when there is so much uncertainty. The one thing I can be fully certain of is my current experience of being, how I feel, who I'm with, what is happening around me right now. I find such mindfulness very comforting..