This past weekend I was in Columbia, MD at a 24 Hours of Booty event. It was an opportunity to see some of my Key to Keys family and cheer them on. All I knew about the event was that cyclists would ride around a 2.1-mile loop and we could stand and cheer for them. However, when I got there I found out it was more than just a cycling event.
24 Hours of Booty is an organization that integrates raising money for the local cancer community through cycling. They help to support and raise funds for local and national cancer organizations. It is a cycling event for all ages and abilities. Most importantly they help to engage communities in support of cancer survivorship and navigation programs.
As soon as I got to the event I was happily greeted by some of my Key to Keys family. We had an area set up with tents and chairs where everyone could sit when they weren’t riding their bikes or cheering. We definitely had the most snacks set up which was a major plus in my book.
At 2pm the event kicked off and the cycling began. I waited to go cheer on the loop until there was shade to sit underneath. That’s when we brought out the mega phones. On our Key to Keys trip part of the job description for a support driver is to be a cheerleader for your group each day. We quickly claimed our area and decided to cheer for everyone.
Now when I say cheer it wasn’t your average, “keep going you got this” or “looking good out there”. We were those people that yelled obnoxious comments that would make you laugh or make your head turn. Some of my favorite phrases we yelled included: “hey hotties”, “my favorite number is your phone number”, “call the fire department because you are on fire”, “ OHHHHH YEEAAAA (said in a voice like the Kool-Aid man), and the list goes on and on. If we knew the cyclist, we would shout particular things we knew they would laugh at. Whenever we saw a group of cyclists we would call them a “wolf pack” and shout to them. Needless to say, we all had each other laughing to the point where we couldn’t breath. It was one of the few times we could shout things to random strangers on the street that was acceptable. We knew the cyclists were also enjoying it when one stopped and thanked us for cheering and shouting things to them.
I was most impressed with the children on bikes who did the course too. Whenever they would go by our group, we would cheer for them too. We all were blown away with how many laps the kids did. Whenever they would ride by us and we would start cheering, they would get the biggest smiles on their faces. Between the Hello Kitty helmet and Cars themed bike, they were killin it on the course.
Not only did we cheer for people but when they would ride by we would comment on their various outfits. We saw everything from your traditional cycling outfits to people rocking tie-dye and wearing tiaras. My favorite was when people were riding at night they decked out their bikes in glow sticks. It was so cool to see someone riding by on a bike with multi-color wheels. Our group wore their cycling jerseys from Key to Keys so we could easily pick them out in the crowd. If we saw groups all in matching cycling jerseys we would shout to them, “twins” or “did you guys plan your outfits or just show up wearing the same thing.” One of my favorite comments we yelled was at a duo that was wearing matching jerseys with the Old Bay logo. We yelled to them at one point, “every time you ride past me, you bring that extra spice I need into my life”,
My favorite part of the event was listening to the speakers at the various meals. They shared their cancer stories with the group or how their organization is helping those affected by cancer. I instantly connected with their stories and completely understood what they were saying. Cancer is a very isolating illness. It’s hard to see everyone else experience the various milestones in life while you feel like you’re stuck on a merry go round. While most people are contemplating what color to paint a room, some are deciding which cancer treatment will give them the least amount of side effects so they can still feel normal.
The one thing that really hit home for me was when one of the speakers talked about how he wished people would, “just freakin ask me” when talking about his cancer. We don’t bite and you can still talk to us regardless of the fact we have cancer. Ask us questions and if we aren’t comfortable with you asking, we will tell you. Don’t just write us off or not talk to us because you are too afraid. Just remember you aren’t the one who has to deal with it on a daily basis. The more we talk about it the better we feel. Most of you know I thrive on making sarcastic comments about anything. It’s my way of getting it out and laughing about it. If you keep it inside, it will only make things worse. Just like you have to be a self-advocate in the hospital setting, you have to be vocal about it.
I also was convinced to participate in the whole cycling part of the event too. I borrowed another person’s bike and helmet. I told the group the only way I was going out there was if someone else was going with me. Luckily my Key to Keys family jumped on their bikes next to me and we went out together. I rode with other cancer survivors and part of the family for the first two laps. It was fun being able to ride and talk with everyone and get to see it from the other side. I loved when people from our group who were already on the course would join us. Later in the morning, when my mom and sister arrived, I went out for my third lap. I got to experience that lap with the two people who connected me with Ulman and helped introduce me to a network of support. At the end of the lap I said to one of them, since the other is super tall and left us in the dust with his pedaling, that I decided that my 3 laps were for my 3 years of treatment. My exciting cycling career started with me biking 6.3 miles and realizing that biking up a hill is a pain in the ass, literally.
This event was filled with a group of ordinary riders who were riding for an extraordinary cause. Most of the riders dedicated their ride to specific people they knew who were affected by cancer. They were riding in memory or in honor of them. There was a huge board that the riders could write their personal goal of how many miles they were riding and a description of what they were wearing. This way you could cheer for them. When each rider reached his or her goal they would come and ring the bell and we all would cheer for them. The miles ranged from 10 to over 300.
While I was riding on the course with my fellow Key to Keys family, my one friend looked over and asked me, “so when do you start your new treatments?” I responded with, “well I started my new treatment over two weeks ago and I took my morning dose about an hour before I got on my bike.” He then had a huge smile on his face. In the words of a friend I met on Key to Keys this past year who has an amazing voice, “I hope some day you'll meet people who turn rainy days into dance parties, who crush goals and fight cancer and make you laugh when your head hurts so bad you want to cry. The kind of people who change your life and make you look at things just a little differently...these are those people for me.”
In the beginning of August I began a Phase II Clinical trial at Dana-Farber Cancer Institute in Boston. In June I found out that my other medication was no longer working at the current dose. My options were to increase the dose or explore other treatments. I didn’t want to increase the dose because I knew my body would not be able to handle it. In the beginning of July, I went to Dana-Farber to find out about the clinical trials they offered. I learned about different treatment options and eventually decided to participate in a Phase II clinical trial specifically targeted at Synovial Sarcoma. They have a whole floor just dedicated to sarcomas.
Most people in my age bracket are focusing on other things in life. Usually they are starting a new job, moving into a new home, getting married, and the list goes on in on. I, instead, was going to start a new treatment, in a new city, with a new team of doctors and nurses, and in a new hospital system. Talk about a loaded sentence. It wasn’t easy for me to make the decision but when I found out there were only 4 spots left in the trial I signed my name on that dotted line faster that anything.
You’re probably wondering what a Phase II clinical trial is and what it entails. Basically in a Phase II trial I am given the highest dose of the new drug to see how my body reacts to it. This dose is based on the results from the Phase I study. There are only about 40 people enrolled in this specific study. They are testing to see how effective the drug is against my specific cancer. If this drug ends up working and pushes through to be approved by the FDA you can thank me for being a test subject.
If you thought getting into an Ivy League college was hard, try getting into a clinical trial. Most colleges reject students because of a bad SAT score or not enough extra curricular activities. If you aren’t accepted into a clinical trial it's because of your genetic makeup. You aren't rejected because your teacher gave you a bad grade or your dog ate your homework.
Believe me when I tell you those spots go quickly too. When there are only 40 spots left for your rare cancer you have to act quickly. I had a 48-hour decision window. I signed the paperwork on a Friday and by the next Tuesday the trial was closed. I compared it to shopping at Best Buy on Black Friday. If you don’t get there early enough and act quickly your TV will be gone. Needless to say you don’t want to mess with us cancer patients when we are trying to get into a trial. We can turn into that crazy lady in line who’s guarding her TV. Simple rule is don’t mess with us. We too are racing against the clock in some instances.
Once you sign your paperwork, your spot is saved. The next step was completing a bunch of screening tests to make sure you were eligible for the trial. If you passed those tests, then you could begin the trial. I however kept pushing my start date so that I was able to go to HITS Saugerties with my barn for a week. As soon as we got back from the horse show and I got Joe squared away, we drove to Boston to complete my testing and started the trial.
Thankfully this trial is a pill. I take 4 pills twice a day. I have to keep a diary of when I take the medicine and it’s strange for me to take it with food. With my other medicine I had to wait to take it on an empty stomach, which meant 1 hour before or 2 hours after food. The drug also looks like the Sam’s Club Brand Ibuprofen that my mom buys. Don’t worry she hasn’t tried to take it……. yet.
In a nutshell my treatments have now taken me to Boston. Thankfully I love Boston. Both my sister and I went to school in New England and loved it here. I however chose to go to a school on the cliffs overlooking the ocean instead of one on the Charles. It’s funny to be back in Boston now for treatment. As we were walking around the city the other day I felt like I was back in college. I don’t think of my life before or during cancer. I think of it just as my life. I hate when people refer to there life as before, during, or after cancer. No need to dramatize it, just deal with it.
I am a private person and didn’t want to share this new treatment until I was accepted into the trial and started taking the new medication. We are in uncharted territory and are learning to just roll with it. We are still trying to get used to the new clinic and how it works.
I initially chose to start this blog to document the bizarre and funny things that have happened. Let me tell you, with a new treatment that means plenty of stories to share. I didn’t start writing to draw attention to myself or to gain sympathy. If you took one look at me, you would never guess my situation. I’ve had several people tell me things like “its great to see you out” or “you look amazing”. They clearly have no idea that I spend the majority of my time at the barn with Joe. When someone says that I look good I have started responding with “it doesn’t hurt to take a shower”.