In the beginning of April, I attended the Young Adult Conference at the Dana-Farber Cancer Institute. I read about the conference online and thought it would be something interesting to go to and connect with other young adults who have been affected by cancer. The conference was a one-day event and was open to patients and their caregivers. When I read that the keynote speaker had the same type of metastatic synovial sarcoma, I told my mom that we had to go.
The weekend of the conference came and we drove up to Boston. In typical New England Spring weather, they were calling for snow. Luckily I still had all my clothes from when I went to college in Newport so I was ready for anything. I was happy to go back to Boston on my terms. For once we weren’t taking a trip up there because I had doctors’ appointments, tests, or scans. We went to dinner on the Friday at one of my favorite restaurants.
On Saturday morning we drove to the conference and were greeted by the Young Adult Program (YAP) team. When I got off the elevator I was happily greeted by one of the social workers that I had gotten to know during treatment who I still stay in touch with. She asked me about my time in Florida and how everything was going with my treatment. I grabbed my name tag and walked over to a community art project called “Stringing Us Together”. There were several different statements on a board that ranged from “I have a dog” to “I like to hang with my friends” to “I am a young adult with cancer”, etc. You took a piece of string and started at one statement and then wrapped it around each one that pertained to you. It almost looked like you were weaving your own web showing which statements best described you. I took an orange piece of string and wrapped it around the various statements that related to me. Then when I was finished I made a knot at the end and moved onto the next thing.
Once everyone had checked in we gathered in a conference room where they talked about the YAP program at Dana Farber and the different programs they offer. Then they introduced the keynote speaker. I knew our stories would be similar when she put up her power point presentation and her first slide photo was a picture of her knee scar. It was identical to mine. Someone else shared the “shark attack” scar. I couldn’t believe my eyes. Finally, after more than 3 years I found another cancer patient who had metastatic synovial sarcoma. Our stories are very similar. Her story is not mine to share but the parallels are uncanny. We both were diagnosed in the summer of 2013. We both have very similar personalities in that we are sarcastic, tell it like it is, and live one day at a time. She is a couple years older than me and has a baby. She’s currently taking the oral chemo that turned my hair white. After she spoke I went up and talked with her for a little while and we exchanged contact information to stay in touch. We both said that we had never met someone else with our type of cancer and although it sucks we have cancer, it was pretty awesome to finally meet someone on the same journey.
I attended two workshops at the conference. The first workshop was about using technology to cope with cancer. In a nutshell, we talked about different apps that patients found useful and we also talked about the development of YAP’s own app. I quickly learned that I am just as bad with technology as I thought. I just discovered what a podcast is and how to listen to them, thanks to my sister. In the afternoon I went to a session entitled “Planning for the what-ifs”, which basically talked about how to cope with the uncertainty cancer brings into your life. I also got to see two of my friends who work for the Ulman Cancer Fund. It was nice to see them out of the office and working up in Boston to bring more of their programs there. It was nice to be at a conference surrounded by people who understood what you were going through.
After the conference my mom and I walked around Newbury Street and then went back to the hotel. We made sure to stop at Flour Bakery + Café to grab some of our favorite treats since they recently opened a new location near our hotel. That night we went to dinner and walked around Harvard Square. There is something about being back in Boston that makes me feel like I am at home. My family has come to love Boston after both my sister and I went to school in Boston and Newport. After I was done with the clinical trial in Boston I wasn’t sure how I would feel about going to the city again. Would my view be tainted because I participated in a clinical trial and failed? But then I quickly remembered that you can’t let the fear of striking out keep you from playing the game you love. You take your past failures, dust yourself off, and keep moving forward. Life keeps ticking on.
Well I made it back from Florida in one piece. From the moment I got off the plane until now, my life has been crazy busy. The times I have to finally sit down and do nothing is usually at night and these days I’m falling asleep on the couch super early.
Florida was ever better than I anticipated. The days were filled with staying at the horse show all day: riding, grooming, grazing, and way too much shopping. You know you’ve been to one store too much when they know you on a first name basis. It was nice to finally do something normal and feel normal. The only thing I had to think about was riding and helping take care of Joe. Every time we walked into the ring, we learned something new and each time we showed, we got better and better. I got more confident jumping and being in the show ring. We even came home with ribbons. Each time they called my name for placing, I had a look on my face that said, “Wait who?” Plus, Joe was in his full element. He loved being in the warmer temperatures and hanging at a horse show for 3 weeks. Thanks to the big blizzard he got to stay an extra week while I had to be back for scans.
I finally got to feel like a normal 26-year old. I spent my birthday at the show with Joe and my barn family. We got to jump and be in the Florida sunshine on my birthday. Don’t worry, I made sure to protect my skin from the sun since I’m super sensitive now. I wore my awesome sun shirts and got a couple more at the show. I have a new nickname now that select groups of people at the barn call me. One night we went out to dinner after being at the show all day. Every time I asked the waitress for something she would say, “sure baby doll”. When she walked away, our table erupted in laughter because I’m no baby doll. Finally, my mom asked the waitress how old she thought that I was. She answered, “She looks like she’s 15.” Needless to say the waitress got that deer in the headlights look when we told her I was 26. For my birthday I was given a saddle pad and t-shirt that both say “Baby Doll” on them as a reminder of that lovely nickname. It was a great 2 weeks spent with my barn family.
Thanks to the impending blizzard I immediately had to go to the hospital for my CT scans when we got home. Later that week I met with my doctor and I was scheduled to start chemo the following week. I elected to do my chemo at home this round. I wore a pump that was stashed in a lovely fanny pack. I carried a pump that connected my port to my chemo for 24 hours. Instead of being in the hospital I got to stay on the couch in the comfort of my home. Once the 24 hours were up, I was disconnected and went on to my usual post chemo routine. I got fluids and rested on the couch because I typically feel like shit. Although I missed my nurses on BP8, it was nice to be home and be with my dogs.
I still get asked the age old question, “What are you up to now?”. My standard response is that I am still on active treatment and in between rounds of chemo I spend my time riding or traveling. Then after saying that, the next question that follows is, “Well how many treatments do you have left?” I don’t have a clear answer for that. Unlike most cancers I was never given a number of treatments before I would be done. Yes, I do get breaks when I ask for them or when my body needs to reenergize. As of right now, there is no cure for my specific type of cancer. It’s more a matter of keeping my tumors at a manageable size and treating it more like a chronic illness.
I think that’s what scares people the most when they ask me how I am doing. I can see the dread in their faces and the pity when they ask how I feel. It is as if they are afraid of how I will answer and they won’t know how to react. I understand cancer is a tricky business. However, the more you don’t ask, the harder it is for me to fill in the blanks for you. For example, if the last time you reached out to me was after the tumor was removed from the back of my knee, then boy do we have a lot to catch up on. I keep a cliff notes version in my back pocket for those days. I understand people fall out of touch and we all move on with our lives. I’ve certainly had my share of fair weather friends. At some point you realize that you need to forget the ones that have forgotten you.
For today I know that I am going to continue on this chemo for another round. As usual, my scans will determine my next steps. Those pesky things certainly have a way of controlling my life some days. At least I have gotten to know the CT techs really well and we have our fair share of laughs on scan days. I am trying to plan my schedule around horse shows this summer and vacations, but we all know that could change in a drop of a hat. You just have to learn to go with the flow and move with the ups and downs, the good and the bad.
Back in the Fall my trainer asked me if I would be interested in doing a horse show down in Florida. At that time I was enrolled in a clinical trial in Boston and had no idea where I would be in March. However, in true fashion I told her to count me in, come hell or high water. I always dreamed of taking Joe to Florida to show. I wasn’t sure what my schedule would be like but she said, as we get closer we will figure everything out. I couldn’t pass up on an opportunity that combined going to Florida and being able to show Joe.
Fast-forward a couple months and as you know the clinical trial in Boston didn’t work and I had to go back to traditional chemo. Luckily I was able to do my chemo at home at our local hospital. This allowed me to stay with my local doctors and do any follow-ups close to home. My chemo schedule entailed doing my 24-hour infusion on a Monday into a Tuesday and then getting the rest of the week and the two following weeks off. In other words, my schedule was 1 week on and 2 weeks off. I did four rounds of chemo and then got a break. The first two rounds knocked me flat on my ass but by the third and fourth round I had a better idea of what to expect and how to counteract everything.
When I started this new chemo I told my medical team from the get go that my goal was to be able to go to this horse show in Florida for 2 weeks. I wanted to finish up my chemo by the end of January in order to give myself the whole month of February to rest and recharge in anticipation of the horse show. Thankfully I am paired up with a team of doctors who understand that I want to have a life outside of the cancer world.
To say I was excited is an understatement. I was like a kid in a candy shop. In order to keep Joe in shape my trainer made sure people rode him while I was in clinic or getting chemo. The weeks I felt good I made sure to go out and ride. There were days I’d be at the barn in freezing cold weather thinking, "what the hell am I doing here?" I would lesson when I felt up to it so I could practice jumping and prepare myself for the show. Joe was more than ready because he knows what he is doing. It's usually me who gets in the way of just letting him do his thing. I overthink everything.
Two weeks before we had planned to head to Florida I started feeling run down. I noticed that each day after I rode, my body was exhausted. Everything started hurting and I could barely get off the couch. Unfortunately with chemo it eventually all builds up. As you get further into treatment your body gets more and more tired. After going to clinic to get checked out I was advised to lay low for the weekend and do absolutely nothing. I was really worried that this was it and there was no way I would be able to handle going to Florida and being at a show for two weeks.
I spent the weekend on the couch resting and doing nothing. As frustrating as it sometimes can be, my body was telling me that I needed to rest and recharge. I sometimes forget that I have cancer. I'll be going along doing a bunch of different things, running here and there, and then all of a sudden it hits me square in the face. I start not feeling well and ignoring what my body is trying to tell me. For example, when I start getting sore all over I know it's because my body is tired and needs to rest. There is a fine line between pushing yourself and getting things accomplished, or taking a step back and resting.
The week before we left was spent getting in all my appointments and all the last minute things you have to do before you go away. Once I got Joe all set and squared away I was able to focus on what I needed to get done in order to go away. I made sure to make a medical ID card, which lists all my medications, as well as make sure I had enough of each medicine to take with me. My mom and I took my dogs to the kennel and made sure they had everything they needed. I had several people comment to me on the fact that they couldn’t believe I was leaving my puppy at a kennel. I quickly set them straight by saying that he was going back to the breeder where we bought him and he would be well taken care of. When I was leaving Raylan I said to him, “I love you very much but Joe came first and I always promised I’d take him back to Florida one day.”
I wasn’t nervous about being at the show or riding in it. I was more worried about getting there and what would happen if I got sick or started feeling horrible. I quickly realized that I was living my life paralyzed by fear. I can’t live my life worrying about managing side effects or by what may or may not happen. The minute I do that I am allowing my cancer to rule my life. Yea it sucks and I deal with it on a daily basis but I can’t let it dictate what I can and cannot do. The past couple years I have been figuring a lot of things out and going with the flow. I can’t afford to plan too far in advance because I have no idea how I am going to feel. However, what I can do is take my situation and make it work in my favor rather than making people feel sorry for me. I have also learned that when I start not feeling well I need to tell the people I am with and listen to my body.
What I was most excited about for Florida is getting a break from my reality. Two weeks away from countless appointments, needle pricks, hospitals, etc. I can finally feel like a normal 25, almost 26, year old. I absolutely love going away to horse shows for the fact that no one knows my story. They have no idea what baggage I left back at the barn when I saddle up Joe and walk into the show ring. The judge has no idea I am currently undergoing treatment. Plus I have chosen to surround myself with a supportive group of people. I wouldn’t be able to do anything if I didn’t have my mom and sister with me. Plus my barn family is pretty awesome and everyone is always watching out for each other. We support each other both inside and outside of the ring. I have no idea what the path ahead has for me or what could happen in the upcoming weeks. What I do know is that I am in Florida with Joe and I couldn’t be happier about it.
This year for Christmas I was surprised with the gift of a Golden Retriever puppy. On Christmas morning I was handed an ordinary wrapped box and my mom started to videotape me. I knew something was up. As I ripped off the wrapping paper it revealed an Amazon box. My first thought was, “oh cool something from Amazon.” When I opened the box, inside I found a stuffed animal dog with a dog bowl. At first I thought, “why would my mom just give me a stuffed animal?” Then it clicked and I realized, holy shit it’s a dog. I started yelling in excitement. Then, of course, I cried because I couldn’t believe the fact that my mom, with a sane mind, decided to get me a puppy.
As some of you know I lost my yellow lab, Forrest, last February. We had just come home from vacation and picked him up at the kennel. I went to bed that night cursing at him for not getting out of my way when I couldn’t get up off the couch. I put him outside before I went upstairs to go to bed. I was so tried that night that I went right to bed and my mom put the dogs away in their crates. The next morning I came down to let the dogs out and I noticed that his back was to the crate door which was odd. He never slept liked that. I yelled to him and our Golden Retriever, Jenny, got up and he didn’t budge; I knew he was gone.
Forrest was my first dog. I had another dog before him but he was our family dog. I’ll never forget the day I got him. My mom let me stay home for the day for a “mental health day.” In other words she let me skip school. I knew that I would eventually be getting a dog but wasn’t sure of the day. A family friend stopped by to drop something off and he asked me to grab something from the front seat of his truck. I opened the door and was greeted by a puppy. I immediately starting yelling with excitement because who doesn’t love a puppy. I named him Forrest after the movie Forrest Gump solely because I wanted to yell, “run Forrest run” when he was outside.
Forrest became like my shadow over the next years. He was always by my side and watching out for me. Whenever I swam in our pool he was right there with me. Forrest was known for thinking that everyone who jumped in our pool was drowning and therefore needed to be rescued. He was kind and loving toward most people. We only had a couple people tell us stories of how when we weren’t home and they delivered something, Forrest stood between them and the door and wouldn’t let them near it. He also was known for chasing any animals out of our backyard. You knew the dogs were away at the kennel when all of a sudden we had deer in our yard again.
In most recent years when I started my treatments he became more attentive and protective. When I was on the couch, too sick to move or didn’t feel well, he was right at my feet. Anytime I moved on the couch he was sitting straight up and looked at me as if he was saying, “what do you need?” When I started loosing my hair and decided to shave my head, Forrest didn’t recognize me. When I got out of the car the first time with a shaved head and started walking into our house he started barking at me as if I was trying to break in. It wasn’t until he heard my voice that he knew who I was.
We picked up the new golden puppy near the end of January. There is nothing cuter than a Golden Retriever puppy. When I finally got to hold him I felt like I was snuggling a teddy bear. He is a huge fur ball. I decided that I was going to call him Raylan. You’re probably thinking, “how the hell did you come up with that name?” The name came from the popular show, Justified. If you haven’t watched it, you should because it’s one of my all time favorite shows. The main character in the series name is Raylan. When I was thinking of a dog name I wanted something that was easy to say, two syllables, and something unique. There was no way I was naming my dog Rainbow or Sunshine or any of that bullshit. I instead named him after a character that played a U.S. Marshall.
We haven’t had a puppy in our house in over 10 years so there was definitely a learning curve at first. I forgot that with a puppy you have to take them out more often and that they will go to the bathroom in the house because they are still learning. I swear I have been outside more in the past month then I have in the past 3 years. Raylan also has had quite a few visitors. It’s funny how many people want to come visit you when you get a puppy. He also has brought new life into our other dog Jenny. She had been very quiet and lethargic since we lost Forrest. After about a week of getting used to Raylan, she was back to her old self. It was as if the puppy helped to breathe new life into the old lady. With how she is acting recently, you would never guess she’s 9.
Every morning my new routine includes taking care of the dogs. After feeding the dogs I take them for a walk around my house. I step into my Bogs and layer up before heading out into the cold. We usually time our walks so we can see the sunrise. It is a great way to start the day. It energizes us to start the day on the good note and reminds us to just keep putting one foot in front of the other.
Raylan has brought more joy into our lives. Everything is new to him so it is a riot to watch him experience it. For example, we had a snowstorm last week and when I first took him out he wasn’t sure what to do in nine inches of snow. Within seconds he was hopping around going crazy. He makes us laugh and is the perfect snuggle buddy on the couch. A couple weeks ago, after my most recent chemo, he spent the weekend on the couch with me curled up in a little ball. There is something about snuggling a puppy that just makes you feel better even if you’re too tired to do anything.
I am a firm believer in the idea that dogs are a reflection of their owners. We have been fortunate enough to have dogs that are calm and friendly. Anytime someone has come over to see Raylan they can’t get over how calm he is. Mind you he does have his moments when he’s running around our kitchen chasing our other dog. He still is a puppy. While he will never replace my first dog Forrest, he has helped to fill the void that he left. I’m not sure how much longer I will get to snuggle him on my chest since he’s growing like crazy, but I plan to enjoy every minute of it.
Most of you know that I spend the majority of my time with my horse Joe. In case you didn’t already know, he is a horse. I have to clarify this because at my sister’s wedding someone asked me why I didn’t bring Joe as my date. I responded that would be a little awkward on the account he is a horse and he would probably end up spending the entire night trying to eat every last carrot in the vegetable display. Case in point I apparently need to say Joe is a horse when talking about him now to new people.
I have had Joe for over 2 years now and we have come a long way. When I first tried him before we bought him I could barely get him to trot. Now we are jumping here and there and getting along nicely. He certainly keeps me entertained whether we are riding at home or at a horse show. I know Joe’s waiting for the day that it will finally all click and I’ll have all my shit together.
For me, riding is where I find my peace of mind. It is where I can go and forget about all the shit that is going in my life. I can walk into the barn, make a kissing noise and immediately am greeted by a familiar face eager for my arrival. Plus, he figured he’d get a treat if he complies. Don’t worry, the only way he gets a treat is after a good ride. If you treat him before you ride he turns into a little shit. When I finally get to sit in my saddle and stretch out my legs, I get my sense of normalcy. I know that for the amount of time I’m in the saddle my primary focus is riding. I’m not thinking about doctor’s appointments, chemo dates, side effects, being tired, or anything else. It’s one of the few places I can focus and concentrate on the task at hand.
Another reason I love hanging out with Joe is that nothing ever changes. He always treats me the same no matter what. On days that I am not feeling my best he doesn’t take it easy on me. He still makes me ask for the canter the right way and is always giving me a run for my money. He snuggles up to me on days when I can’t ride and always loves getting a treat. I mean who doesn’t love free food.
There has been a lot of uncertainty in my life and he’s one of the constants that I can count on. When I found out my clinical trial wasn’t working I went to the barn to ride. When I got the call I wasn’t eligible for another clinical trial because of an elevated level I was on a trail ride with Joe. When I had to go for a scan in the afternoon I rode in the morning. Some people have yoga and I have my riding. When friends stopped talking to me or would ignore me when we saw each other in public, I went to see Joe. When I have mornings that I wake up and need to get out of the house and go somewhere I head straight to the barn. I go enough that if for some reason I don’t show up at my usual time I get a text from my trainer asking if everything is ok.
My favorite thing to do when I ride is jumping. It is so much fun cantering up to a jump and then asking a thousand pound animal to take you over it. You have to have the confidence and commit to it. Otherwise you’ll end up flying head over ass straight into the jump and yes I know this from experience. It is the closest you can get to experience what it would be like to fly. Horses provide us with the wings we lack. Plus, could you imagine how ridiculous I would look trying to jump over a jump myself. I can barely jump a cross rail on my own let alone a 2’6” oxer.
What I love about the barn is that when I go there everyone treats me like a normal person. They don’t look at me and say things like, “oh you don’t look sick at all,” or “I can’t believe you have cancer.” I also know that when they are talking to me it’s not because they feel bad for me or feel obligated to ask how I am. They are my barn family. They make me laugh and keep an eye on Joe for the days I can’t come out because of appointments or when I feel like crap. They also appreciate my random t-shirt collection. I am known for wearing the most random t-shirts that range from tie-dye to kielbasa festivals. They are always willing to lend a helping hand and give Joe extra treats.
My favorite part about spending time with Joe is his unconditional love. We are a team who works together. There are some days when I will do stuff when I’m riding and think this is it, he’s going to buck me off, but then he shakes his head and moves on. Then there are days when he is so stubborn about things that I have to work harder to remind him that I am not simply his token passenger for the day. We recently did a clinic together at our barn in November and the trainer said to me, “you know he really looks like he’s your horse.” The last time we did a clinic with this trainer over the summer she told me I needed to have more confidence in the saddle and show that I knew what I was doing. I completely agreed with her 100%. I was nervous about the lesson and she didn’t bullshit me. She told me exactly what she saw and I loved it! To hear her say that we looked like a team now made my day. Yes, we did also learn a lot of other things that have been super helpful but it really puts it into perspective that all those hours spent in the saddle are starting to pay off.
My tack trunk neighbor has a sign over her tack trunk with a quote by William Steinkraus that says, “we must never forget, every time we sit on a horse, what an extraordinary privilege it is: to be able to unite one's body with that of another sentient being, one that is stronger, faster and more agile by far than we are, and at the same time, brave, generous, and uncommonly forgiving." It reminds us that we wouldn’t be there without your horse. Yes, sometimes we are champion one day and the next our horse thinks it’s a great idea to refuse to go over a jump or start freaking out when another horse invades our personal space in a flat class. You have to stay in that moment and focus on what’s in front of you. You can’t be thinking about the final jump in a course when you are just about to go over the first jump. Just make sure you do them in the right order otherwise things will get awkward fast.
Everyone assumes that a new year is a time to start over. I’ve read countless posts, articles, etc. about how this year will be better and what different people would do to change themselves to make it better. But how can you change something that hasn’t even started yet?
It’s been one hell of a year to say the least, but rather than looking at all the bad stuff that’s happened, I like to dwell on the good. I could go month by month to give a play-by-play of everything that happened, but even I don’t want to read that and I was the one who experienced it. I’ll instead give you the cliff notes version.
The common thread that connects all my experiences from last year is the people who I shared them with. They range from cheering a group of cyclists as they biked down the east coast towards Key West to dancing like a crazy person with a group of kids at camp. They’re the people who cheer me on when I’m in the show ring with Joe and help us along the way. Joe and I may not always have it together, but when we come out of the show ring, they always find the positives and explain what we can do better next time. They make me laugh when I’m at the doctor’s or in clinic and make sure I have my pretzel snacks
When it comes to my treatment I could be all poor pitiful me and constantly say how shitty I feel, but no one wants to read about a whiny cancer patient. Hell, I don’t even want to write about that. Right now I’m trying to find the balance between being in clinic and having a semi-normal life. Mind you, I am ok with going to clinic - especially when I need to be there for my fluids or drugs. Plus, I love seeing all the nurses. They give me cookies and pretzels. What’s not to love?
A couple weeks ago I was driving out to see Joe, and I just wasn’t having it. I wasn’t myself and I was unsure about everything. I had just started my new chemo, and I wasn’t anticipating the harsh side effects. I was frustrated that I couldn’t ride and the fact that I was back to being in and out of clinic all the time. I just wanted to hang out with Joe in his stall and give him a big hug. We didn’t know yet if my treatment was working, and I was wondering if it is really worth the harsh side effects?
That’s when a new song came on my phone. I regularly listen to Internet radio on my phone. I am now that asshole who uses up the data on our cell phone plan. I had put on a playlist when “My Silver Lining” by the group First Aid Kit came on. In one part they sing, “There’s no starting over, no new beginnings, time races on/And you've just gotta keep on keeping on/Gotta keep on going, looking straight out on the road/Can't worry 'bout what's behind you or what's coming for you further up the road/I try not to hold on to what is gone, I try to do right what is wrong.” It was just what I needed to hear. When I got to the barn, I hung out with Joe in his stall. As he wrapped his head around my shoulder almost like I hug, I knew everything would be ok. Then I realized the little shit was trying to get to my pocket to see if I was hiding treats from him.
Life is about finding that silver lining in everything. It’s about finding the positive in the most negative situations. Mind you it isn’t always easy, but sometimes you have to buckle down and get the job done. It’s about focusing on the tasks in front of you rather than dwelling on the past. It’s about not looking into the future and worrying about the what-ifs. I could spend my time dreaming of what my life would be if I didn’t have cancer, but I wouldn’t be where I am today. I wouldn’t have met all these amazing people or gotten my horse Joe. My granny used to always tell me “life isn’t always easy, but it is how we handle these tough situations that make us into the person we are meant to be”.
This isn’t something that happens overnight. It’s not like I woke up one day with flowers and rainbows shooting out of my ass. It’s taken me time to see the positive and a hell of a lot of patience. I can wait in clinic for hours and be ok with it, but if someone is in the passing lane and not even going the speed limit I’ll still turn into a masshole driver. If you aren’t going to pass get out of the damn passing lane! It’s a simple concept. You just have to go with the flow even if it makes you uncomfortable. There is a lot to look forward to in life and sometimes you have to get out of your own head to experience it.
In case you didn’t know, I am back on active treatment. Translation: I am back to chemo. It hasn’t been something I’ve been marketing or telling everyone. When people ask you how you are doing or comment on your “healthy appearance,” it really sucks that you have to tell them you’re back on chemo. They usually don’t know what to say next because it took them a hell of a lot of courage just to ask how you have been. If you know me well, you know one thing, I don’t bullshit.
I’ve had 2 rounds of in-patient chemo so far and to say it’s been hard is an understatement. It has kicked me on my ass to the point where I am barely able to get up off the couch. The hardest part for me is not having enough energy to ride or do basic tasks. There is nothing worse then finally being able to tack up your horse then ride briefly before having to do an emergency dismount because you’re too tired to hold yourself up. I am lucky enough to be supported by my barn family through all this, especially when they have to grab Joe for me and I have to go take a brief break on my tack trunk to catch my breath.
I am grateful to have been paired up with an oncologist that has a similar sense of humor and outlook on the world that I have. Many times we spend appointments trying to one up each other with sarcastic comments or share horror stories of the medical world. While it seems like fun and games, there are some days where my doctor can take one look at me and know that behind that forced smile is a slumped over deflated patient who is tired of dealing with this cancer bullshit. It’s in times like that when you know you have a good doctor who is looking at the well being of the whole patient rather than just the cancer inside them.
I was recently given a reflection from my oncologist that he wrote that I want to share. Don’t worry I got permission to post it to the blog. I made sure to cover my bases. I am hoping to come back in full force in 2017. I have plenty of stories and it’s been one hell of a ride so far. All I can say is what a long strange trip it’s been.
A Clinician’s Confession
Sometimes we forget that you are young
Sometimes we forget that you are an adult
Sometimes we even forget that you have cancer
We don’t always notice the tears behind that smile
We don’t always notice the needles in your arms
We don’t always notice that you spend most of your day with us
Often we fail to see that this isn’t what you had planned
Often we fail to see that your family and friends seem different
Often we fail to see that things aren’t holding together as they should
We never forget that this is unfair
We never forget that your life has changed
We never forget that there is somewhere else you would rather be
Secretly, we look forward to our visits with anticipation
Secretly, we wake up at night thinking about what we should recommend next
Secretly, we share the joys and sorrows of scan days
We were young adults when we were first given the privilege to be involved in your care
We were young adults when we first witnessed lives with cancer
We were young adults when we first realized that life is unfair
We promise to take this journey with you wherever it may lead
We promise to remember that you are not a child
We promise to remember that you are a young adult that lives with cancer - every day
When we forget, and we will, remind us with that gentle grace and dignity with which you caress the world.
-Written by Christian Adonizio, MD (December, 2016)
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.
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.
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.”