Treatment 7 of the Keytruda clinical trial was yesterday. The big news is that we were able to transfer our treatment from UMPC to the James at Ohio State. We were driving 9 hours a day to go to UMPC and as you can imagine that was brutal. The expense of the Ohio/Pa turnpikes,gas,and hotel stays when we had to stay overnight were really a hit to our budget. Not to mention the wear and tear on our car. Our car broke down after treatment 5,and had to be towed from Ohio back to Michigan where it sat for a month before we put a $5000 engine into it. The James will be a 6 hours round trip, which is 3 less hours of driving. I tell you it doesn’t feel like it was less today, but I am sure it will over time.
This was our day yesterday- Got up at 6:15am and left our house by 7. We got to the James at 10:30, and got registered. We finally got the lab work done around 12:30.We finally saw the dr at 2:30? and got treatment around 4:30. We were out of hospital at 5:30 and on our way home. We didn’t get home til around 9 as we made a few stops-once for a slurpee for my hubby,and once for a take out dinner for me. We were both so tired when we got home that we pretty much went right to bed. My sweet husband got up this morning,and went to work despite very little uninterrupted sleep.
Most cancer patients will tell you that you spend a lot of time waiting. Waiting for diagnosis, waiting for appointments,waiting for drs, waiting for treatment.. It is exhausting. I ate 2 donuts for breakfast yesterday (thanks Bennies Bakery),and then didn’t eat another bite until 3:30 when a kind nurse brought me a sandwich while Mike got his infusion. First of all, I was afraid all day I would go to get a sandwich and miss the dr.. or a crucial piece of information…Secondly, when I finally had a minute to get a sandwich there was nothing open at the James to get anything. Third, I hate to eat in front of Mike.He is really cool about it, and encourages me to eat but I feel guilty that I can eat,and my dear husband can’t. I try not to eat anything I know he would love in front of him,so I am usually getting something on the run. You would think I would lose some weight doing this but no..I have lost the joy of eating for pleasure, i eat now to keep going.It is no fun to have a meal when your husband is unable to eat and has lost 40 pounds.
The appointment itself went fine. We really liked the Dr. She took lots of time with us, and we really liked her. I had a nice interaction with the scheduler I met at Ohio State, she was very kind. It is so grueling of a day that you really appreciate the kindness of another human being,or maybe I am just so over whelmed by it all that another human being acknowledging it takes on a greater meaning. I try to live everyday not thinking about cancer non stop. Of course this is impossible. Then days like yesterday I am bombarded with it non stop. Watching the other patients,and care givers seeing the devastation cancer brings thru loss of limbs,loss of hair, loss of privacy,weight loss. The loss of innocence has to be up there in regards to the greatest of losses. You see the devastation everywhere, and the fear. Cancer=loss