As most of you know, I have been traveling to Boston every other week for clinic days. Typically, we drive up one day, spend the next day in clinic and come home the following day. Right now I am given two week’s worth of my clinical trial drug and I go to clinic to be monitored.
The first thing that happens when I go to clinic is to get blood work. I know it sounds super exciting. I also have to get an IV put in for my blood draws. On my first day of the trial I felt like a human pincushion. After 2 failed attempts at IVs, I finally convinced my nurse in clinic to put the IV in the vein I had specifically told them to use. After dealing with enough pricks, I know where to go.
Then you go to the sarcoma floor and are seen by the nurse practitioner. She basically does a once over and checks to see how you are doing. She checks everything and asks you several questions about how you’re feeling and what you have been up to. Usually along with the nurse practitioner are your clinical research nurse and a couple other people who are following your trial. They are always astounded when I say that ride my horse almost every day. They always ask about my horse Joe and what’s new. They were intrigued by the Kielbasa Festival when I was describing it to them one week and couldn’t get over the t-shirt design for this year.
Last time I was in clinic I had to re-sign my consent form. This usually happens when something new is added to the trial, such as a new side effect or basically any new information. When my clinical trial nurse was showing me the new forms, it was marked with post-it notes to show where I would have to sign and where the new information was located. She made me a cheat sheet that read, “#1 yes, #2 yes, and #3 no.” As soon as I saw the cheat sheet I said, “would you like me to hide this in my shirt and bring it out when the doctor comes in so he thinks I was studying it?” Then we started laughing hysterically. When you sign a consent form the doctor has to be in the room with you and witness your signature. The doctor came in the room and we both were trying to keep our cool and not start hysterically laughing about the cheat sheet. When it came time for me to sign the form, I grabbed the post-it from inside my shirt and said, “hold on, let me consult my post-it here.” Luckily the doctor started to laugh. Needless to say, we once again started laughing and I made sure to keep the post-it note.
Next you go back to the waiting room and check in for clinic. When they eventually call you back, you are ushered into a room that usually has a bed and a chair with a TV for you to watch. Then you wait forever for the pharmacy to release your medicine. As anyone knows this can take forever. We typically wait for 1-2 hours. During that time they take my blood again and do an EKG. Luckily, during one of my longer days I got to watch the Olympics on my computer. I was able to watch the team final in Olympic show jumping. Now mind you, I am not a quiet fan. I am very glad the room I was in had a door to close because, at times, I was shouting at the screen. I am not a silent fan at equestrian events. Remember Julia Roberts in Pretty Woman at the polo match? Yea, that’s me at most horse shows.
Most of the day in clinic is spent waiting for another blood draw and trying to figure out what to do to pass the time. The first two times I went to clinic were long days where I was required to stay in clinic for six hours post dose. This was in the beginning of the trial when they would take my blood one, three and six hours post dose. Luckily those long days are done for now. The last two times I went we were only in clinic until around one o’clock, instead of after five. We usually watch Netflix on the computer or watch TV. I like to take walks to the Healing Garden which located on a different floor. In August the entire room was filled with orchids. It is a quiet place in the hospital filled with various plants and floor to ceiling windows to look outside.
Now don’t worry, we aren’t spending the entire time at Dana-Farber. When we go to Boston my visit usually revolves around food. As many of you know, the restaurant scene in Boston is amazing. Needless to say, any weight I have gained in the past few weeks is because of these damn restaurants and their delicious foods. In the past three years I have acquired a greater appreciation for food. Right now I am able to eat and am hungry, so I take full advantage of it. We also spend a lot of time walking around Newbury Street as well as Boston Public Garden.
Driving five hours both ways every other week does take a toll on you. At times we find that we are constantly on the go. We typically plan our weeks now around when we are going to Boston. Once we get our clinic days, everything else is scheduled around that. Now don’t forget that my trial is taking an oral drug, so it’s taking pills. Everyone seems to be confused by this and assume I am getting some type of infusion. Just remember what happens when you assume.
Another benefit of being in Boston is that I am able to see my friends that live in New England. I have been able to have lunch or dinner with them. When I’m stuck in clinic waiting for a while, a good friend comes up to visit. I also got to make some new friends in clinic. During one of my clinic days we were sitting in the waiting room and my sister struck up a conversation with a husband-wife duo. We started talking with them and sharing our experiences. They were so nice and we swapped restaurant ideas to go to in Boston. It was nice to talk to someone else on a clinical trial who understood what it’s like. It’s always nice to talk with someone close to your age who has a positive outlook on life.
The hospital and doctors at home are still a part of my team. They stay informed about what is going on in Boston. Ultimately I feel like we are in the right place right now for my treatment. Sometimes it’s hard always being on the go, but you have to go where the best options are offered. I like being on a floor that is specifically for sarcomas. Plus, they all have these awesome matching fleece jackets that reference the fact they are The Center for Sarcoma and Bone Oncology. You bet your ass I am trying to figure out how to score one of those. I think it’s a legitimate request to give the patients the jackets too. We are the ones being treated there and should get some type of door prize. The odds are already not in our favor based on the fact that we are being treated for our rare cancers. One thing that would help make us feel better is a nice fleece jacket to wear around. Not only would it bring us comfort but it is also free advertising. Why waste money on commercials or billboards when you could have your patients wear the jackets and then talk about their experiences.