Next phase - cure brain inflammation, regain all motor function, and start immunotherapy -- 10/7/2025

 I was discharged from the Spaulding Acute Care Rehabilitation Hospital today after 10 days of intense Physical and Occupational Therapy and Neurological checks every 4 hours. When I arrived I could only pivot on my good leg from the bed to the wheel chair to the commode and back. Today I am 100% independently mobile with a four-pronged cane. I'm also quite slow and can't really walk more than 600 feet before getting very tired, but I can get anywhere in my house and do anything I need to do (except chores like walking the dog, taking out the garbage/recycling, etc.)  My PT/OT Therapists (Tori, Natalie, Sam, Kristen) have given me a  2 hour daily workout schedule to continue to develop strength, balance, and motor control in my left leg. My left arm is 100% back to baseline!

I saw my Medical Oncologists, Drs. Daniel Costa and Tim Carradonna, after getting discharged. They told me that part of the genetic analysis of my brain tumor came back at it has a TPS score of 100/100 which is even better than the 90/100 for my lung tumor!  They want to see the full genetic analysis though (probably by 10/13) before deciding on a treatment plan, but it will probably be the Pembrolizumab immunotherapy infusions every 3 weeks for 2 years!  Even if I have some additional metastases, as long as they aren't life threatening, we will probably just deal with any symptoms and get onto system immunotherapy as soon as possible, as my immune system should be able to rapidly destroy any cancer cells with a TPS>=90.

So I'm in a transition period. I will be tapering down on the steroids (which block the immune response) but hoping that they are strong enough to cure the brain inflammation over the next 4 weeks of tapering down.  When I have tapered down to 1mg of dexamethasone a day (about 7 mg of prednisone), then I can start pembrolizumab.  I'll need to get a baseline CT scan from head to thigh so that we can see the impact of the immunotherapy in 3 months.  If I have Progression Free Survival, then we continue until it is all gone or is stable. If not, then my very talented medical team has lots of backup plans and I'll let them figure it out, so I don't have to worry!

It is great to be home and I'm thankful that someone else will be able to have my spot at Spaulding Rehabilitation Hospital. The entire staff is deeply caring and welcoming and highly skilled, from nurses to patient care associates, to doctors, residents, medical students, case manager, dieticians, cleaning staff, and front desk staff. It makes a big difference to be in an environment where you know everyone cares about you and helping your recover as quickly and fully as possible.

Now is a time to be patient and work hard at recovering strength and motor control in my legs, while curing the brain inflammation, and nudging my adrenal glands to start creating their own steroids again!