Refining the treatment plan and appreciating the support - 9/16-17

First, I want to thank all of my friends (and family), who are reading my blog posts on Facebook and following my cancer journey. I've always used writing in journals to help me process my thoughts and feeling while plotting my way through this wild and precious gift of life. This is the first time I've shared such personal musings in a public forum with friends from all eras of my life and it has been a wonderful and enlightening experience.

I deeply appreciate all of the supportive thoughts and the uplifting prayers from all different faith traditions. It reaffirms my sense of being an intimate part of a personal network that spans so many disparate social groups with different world views but a common sense of our shared humanity that transcends our own particular ego-based identities. No matter which groupings we identify with, we're all spiritual beings making our way through the world the best we can, and I feel that common bond in many of the comments you've left on my blog posts. Thank you!

Another really enlightening aspect of this public sharing is reading your reflections of some of my musings. Your comments often reveal new and hopeful ways of interpreting this cancer journey, bolstering my confidence in choosing to live life fully while treating this disease. I feel like I'm learning so much about life seeing my experience through your eyes.

Finally, I do like all of the praise, but I don't think there is anything especially special about me. I think I'm just lucky to be able to fully accept and appreciate the present moment and to look for and see the beauty and love that surrounds us always. Daily mindfulness and gratitude meditation for five minutes each day has been a godsend as it allows me to compassionately and non-judgmentally observe my worrisome thoughts when they arise during the day and let them pass while acknowledging all I have to be thankful for.

Here is my latest health update with more technical details...

I spoke to my neuro-oncologist, Dr. Erik Ullmann, around noon yesterday and he explained the current plan, and I reviewed it with my primary contact Dr. Melani Zuckerman who will maintain contact between all of the specialists - Dr. Hertan (radiation oncology), Dr. Ho (medical neurology), Dr Costa (medical oncology) and others.

So the current plan is to redo the cyber knife radiation planning because the MRI found a new, small metastasized tumor (2mm near the older brain tumor excision site) which needs to be zapped. Hopefully they can do the new planning scans tonight or tomorrow and have the radiation cyber knife procedures next week 9/22-9/26, for 20 minutes/day. After that I would taper down on the Dexomethasone steroid the following week (9/29-10/3), as it blocks the Keytruda immunotherapy. If I still need to deal with brain inflammation, there is another drug I can take (Bevocizumab/Avastin) that doesn’t block the Keytruda but can’t be taken within 5 weeks of my last brain surgery (which was 8/28). In any case, I can probably start Keytruda on the week of 10/6, probably on Thursdays starting 10/9, and every three weeks for 2 years. If my motor control doesn’t return quickly, I might need to go to a rehabilitation hospital for a few weeks of PT and OT.

This is a good plan and I’m going to take it one day at a time, and maintain daily contact with my primary MD contact to make sure the plan is on track..

Good news for today is that my leg and arm are noticeably stronger this morning and I can move from my bed to my chair with minimal help. I can balance on both legs which I couldn’t do a few days ago! Also the MRI scan showed no cancer in any of my vertebrae, so once the cyber knife procedure is done, I’ll only have my lung and lymph nodes to clear of cancer and Keytruda can do that!

We had a beautiful sunrise this morning!