The Return Home / Navelbine / Shoulder Scans

It's been harder to adjust to home life than expected; I've been home for one week now. Transferring from a fully handicap compliant living environment to probably the furthest from such a place (my home) has been a huge adjustment, but I'm starting to get more comfortable and slowly reclaiming my old life. The video posted above is actually from my first evening back from Spaulding.

The stairs at our apartment have proved to be easier than expected and the largest hurdle has actually been navigating off Beacon Hill to the rest of the world. The terrain outside our apartment is very steep and studded with cobblestones and un-matched brick. Need-less-to-say once I am able to navigate the neighborhood I should be ready for the Ironman or Navy Seal Training.

All of our apartment handicapping has paid off well too. Autumn, Mom and Sister Kim installed handrails on the toilets, assembled a shower chair, installed a handheld shower head downstairs and put rails on the bathtub. Everything works great and does make our place more handicap accessible, at least in the bathroom.

Last Monday I started up chemotherapy again. Just when I was starting to get comfortable with my daily routine and workout schedule, they threw chemotherapy back into the loop. This new drug is called Navelbine. It's given weekly, every Monday, intravenously through a 20 minute infusion using my port. So far, after round one, the side effects are minimal and it is very tolerable. Unfortunately due to my platelet counts I was only able to receive a half dose which is maybe why its was so tolerable; however, the hope is that in the future, as I heal, we can increase the dose hit the tumors harder.

As a chemotherapy drug, Navelbine, is an off-the-shelf medicine that is known to be gentle on platelets. It doesn't have the best track record with my specific disease and is no way considered a targeted therapy but if it works for me, then it works. We have entered what I like to call the oncology guessing game and is why sarcoma research is so important. There is no crystal ball for sarcoma so our plan over the next couple months is to keep on trying drugs until one bites.

I've been hanging in there. Everyday brings a new struggle and a new seemingly life threatening pain. I developed this weird shoulder pain last Tuesday which we're investigating with MRI scans this Sunday and following up with several hours of doctor appointments on Monday. Should be fun! I really hope I just slept on my shoulder wrong.

Otherwise my days are filled with home-visits from a physical therapist (3x a week), self-guided physical therapy and relaxing at home with family, friends and of course Benson. Progress has been a little slower then I'd like which has been frustrating but we've been able to fit in the occasional adventure which is nice. Last weekend we went to the Boston Garden which was such a treat!