How do you tell people that your clinical trial didn’t work? How do you tell them that from a clinical standpoint it did nothing? How will they respond? Will they give me that look? Will they put a positive spin on the experience? More importantly, will they be disappointed too?
I had my 8-week check up scans to see if the clinical trial was doing anything to the sarcomas in my lungs. I knew it wasn’t good news when my doctor in Boston and my clinical trial nurse came in with that look on their faces. Usually during my appointments there is a group who come in to take notes, give me my new schedule, etc. When it was just them 2 of them, I knew.
Basically the scan showed, from a clinical standpoint, that the trial did nothing. After hearing that news they went into the “what’s next speech”. I would like to say I was paying attention but for some reason their voices sounded like Charlie Brown’s teacher: that whomp, whomp, whomp, whomp whomp. It wasn’t that I didn’t want to hear the next options but I was just trying to wrap my head around the idea of the drug not working. No matter what, it still sucks. Anytime you enroll in a type of clinical trial it’s a 50/50 chance whether it will work or not.
I would like to say I was shocked but I really wasn’t. The only side effects I was experiencing was getting tired easily and a new wave of migraine headaches. Those are a blast let me tell you. Luckily I have family members who also experience those headaches so when I got freaked out the one day when I couldn’t see because to the auras, they were able to calm me down. Anyone who gets migraine headaches knows what I am talking about. They are nasty and no fun.
After talking about the other trial I could enroll in and getting a wash out period, I asked to see the rest of the usual group who come into appointments. We had brought each of them little chocolate gifts. Apparently no one brings them stuff because they all were super excited about it. But then again, I would be too if handed chocolate.
When we were finally done with my appointment and getting an EKG and ECHO to close out the old trial, we decided to drive to Newport for dinner. As soon as we got there I told my mom to drive down Thames St. and onto Ocean Drive. Something about seeing the Newport Bridge and the ocean makes you feel better. It was an absolutely gorgeous afternoon. Once we were finished driving and looking at the ocean we met a friend for dinner at one of my favorite places. Then we went for ice cream and headed back to Boston.
The next day my sister met us in Boston and we headed to Martha’s Vineyard for a couple days. One of our family friends has been inviting us to come visit for years. We had decided a couple weeks ago that at the end of September we were going to go and visit them. It’s funny how things work out. It was just what I needed before heading home.
We had a blast despite the rainy weather. Their house is in an area where it is calm and quiet. Since a lot of people knew we were going to Boston for my follow up scans, I wasn’t in the mood for sharing the new development. I just wanted to enjoy being away and being by the ocean. We went shopping one day and drove out on the beach. Plus they brought their one dog that is my BFF. If I were to ever buy a house in MV I would definitely do so on Chappaquiddick. I absolutely loved being able to just jump in the car and drive onto the beach with their dog. When I picture my happy place that is what I am doing. Don’t worry; Joe is still my other happy place. We can have more than one.
Another thing I did while I was away was try to disconnect from the world. A lot of people knew we were in Boston and getting scans and I just couldn’t keep track of who to tell, who not to tell, who can I tell that won’t tell anyone else, and the list goes on and on. It was just too much to think about. Plus I knew a lot of people would ask, well what’s the next step? My response to that is I get a month wash out period before I begin the next trial. The next trial is an infusion style so for me that means I have to deal with a lot more picks and IVs. My veins are already severely pissed off so they want a break too.
I was most happy about the fact that I get a four-week wash out period before I would begin anything new. I am all for getting time off from medications that don’t work. I have had several people ask me if I am going to travel or go on vacation. Right now I would like to just rest and recuperate from the past 2 months. Traveling back and forth and the combination of coming off the trial do eventually take a toll on your body. I am perfectly happy just riding my horse Joe and resting. I have learned to go with the flow and take things as they come.