Uncertainty, Hope and a broken Cyber Knife

This week (11/2/2025-11/8/2025) has been exciting and on the whole a very good week. I was discharged from the hospital on Sunday (11/2) and have been living at home. Yas has taken a leave of absence, and Shaye and her partner Kyndra came up from New Orleans.  Caitlin and Ryan stop by when they can and Fezco our dog and Allie our cat give us their unconditional love. Living at home is so much better than being in the hospital.

Caitlin gave up her childhood room for me to use as a hospital room, so we have a hospital bed where the back and knees can be automatically raised and lowered. We also moved another bed into that room so Yas can sleep in the same room with me, but for the past few days she's been sleeping with me in the twin bed. I love cuddling with my wife all night! 

We created a daily schedule where I do PT exercises 3 times each day, eat 3 good meals a day, nap between meals, and we take one outing a day where I walk down the 25 stairs from our 2nd floor apartment to the car, then Yas drives me around somewhere, and then I go back up the stairs. The goal is to make sure that I can easily make my outpatient appointments (especially the immunotherapy infusions) as I taper down the steroids.

I was supposed to start my Cyber Knife treatments this Thursday but the machine broke down on Monday and they are still trying to fix it! That is a little bit of uncertainty. The bigger uncertainty is how my body will react on Tuesday (11/11) to the second infusion of Keytruda and the first infusion of Avastin. I'm very hopeful that these systemic therapies will both lower my brain inflammation and start killing the lung cancer tumors in my brain, lungs, abdomen, and pelvis!

I have been tapering down on the steroids and making sure I don't lose mobility.  I have been taking 2mg of Dexamethasone once a day since Wednesday and my mobility is stable if not increasing! My daily outings have been fine and I'm gaining mobility even as I taper down the steroid.

Being at home surrounded by loved ones has had a major impact on my Quality of Life. Even though there is a huge amount of uncertainty, I feel blessed to have both short and long term plans, and to be able to be with my loved ones. My nephew Josiah will be joining us on Sunday (through Thanksgiving) and my sister Nora will also be here for Thanksgiving, as will Shaye and Kyndra and we continue our 25+ year tradition of having Shaye's Dad Joe Cohn and Shaye's Aunt  Lisa and Uncle Chris Sjoholm (who we think of as our honorary brother in law!) and as many Sjoholms as can make it!

Overall it has been a great week with a high quality of life and I'm very hopeful about next week, even with all of the uncertainty.  I'm taking each day for all the gifts it has to offer!