Footnote

Clinical trial infusion nurse told me end of day yesterday that they would not boot from trial if rash appears, they just try to catch and control early. Don't know where the irrational fear of mine stems that we would be removed from trial but great to know it's not the case! Phew.

No nausea today. Yay!

Always something...

September 2019 Flat Rocks Bartlett NH

Hard to believe this photo was taken a week or so ago which was less than a month out from the successful cervical spine surgery and start of Dana Farber clinical trial. I feel as though James is a cat with (hopefully way more than) 9 lives. This is the 3rd or maybe 4th instance of us (or maybe just me) thinking we're running out of options and then suddenly we're back in the game.

He's healed well from surgery. It's been almost 5 weeks, we go tomorrow to get the stitches out if they can find them. I feel like it's all healed over, crazy long time for stitches.

We're sitting at Dana Farber in the infusion center now getting his second clinical trial treatment, a combination therapy of the Opdivo (same as before) with an added magical targeted thing (will need to find the actual info to add in.... brain currently not working). With the first treatment side effects were minimal. He had some nausea the morning after but it could have been a massive frappe I'd made. I won't do that again. Oatmeal it will be.

When we were in NH we noticed a rash on his shoulder and chest. If treatment related may have been the end of it but after messaging the DF doc over the weekend with graphic photos he was certain it was Shingles so called in meds. We were told the Shingles can lie innate in your system then be triggered by something or other including some cancer treatments. I have to say I was so happy that's what it is (easy for me when I'm not dealing with the itchy mess) but better than being booted from the trial. Fun fact when you go for treatment and haven't been on the Shingles med for 72+ hours (started on Monday midday and today is Wednesday midday) they consider you contagious and tuck you away in a special room with air that vents directly outside instead of shuffling you from floor to floor. It's been a pretty relaxing day and I told the med staff we may claim shingles every time.

Anyhoo, we're still here plodding along. May go fishing again if I can get my bead work done in the next couple days. Finding balance (med/life/work) is difficult but we're doing our best. Hope you are too! xxoo Beth and James