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I was standing in front of a group of over 300 people when I was handed a microphone. I took one look at the crowd and thought, “well here goes nothing.” I hadn’t practiced my speech or thought a lot about what I was going to say. As I looked over the crowd, I saw my barn family, my family, and friends I have met throughout the years. I figured if anything went wrong with my speech, I could just pretend to be sick. Thankfully, I didn’t go that method because my doctor friends probably would have rushed to the speech area thinking something was actually wrong. That would have been awkward, to say the least.
It was in January this past year that I heard about the Ulman Cancer Fund for Young Adults. I was at our annual barn Christmas party when the host mentioned it to my mom and me. After the party we found them online and thought it was a great organization. Then in June, we met the COO of Ulman at our family friends’ home. It was right after my lung biopsy and they started talking about having a party to raise awareness in September. The party would be called, “Screw Cancer Brew Hope”. They asked if I would be the poster child for the event and speak at the party. I immediately said yes and thought the party was a great idea. You are probably wondering, “What is the Ulman Cancer Fund for Young Adults?” They are an awesome organization that helps connect young adults who have been affected by cancer. When you think of cancer you usually think of the pediatric side and older adult population. You don’t think of someone who is in college, graduated college, just had a baby, just started a new job, or anyone who is 18-40. UCF provides guidance through the medical world and a way to connect with other cancer survivors for young adults. Just Google them. As the summer flew by, we were preparing for the party by compiling several lists, deciding on items for the silent auction, and getting ready. The event was posted on the Ulman website and invitations were e-mailed and snail-mailed. Two weeks before the party we had a little over 150 people, which was amazing. We were planning for over 200 and were anxious to get more people to come to the party. Then the week of the party the tickets started selling more and more. It went from 150 to 200 then 250 and then over 300. All of us were blown away by how many people bought tickets. The night before the party we had a BBQ at our house with the family who would be hosting the party and our friends from Ulman who were in charge of the party. We all were excited about the party the next day. Even though some of us talked about the, “parking situation” for over an hour, we had a good time together. Our major concern was the rain but – hello - that’s why we had tents. We finished the night around our fire pit making s’mores and laughing about everything and anything. Saturday morning we all woke up to rain. It was the type of rain that was constant and wouldn’t stop. As we were putting the tablecloths on each table we all thought, “good thing we got a tent”. We spent the morning putting the sunflowers on the various tables, setting up the silent auction, and planning what to do if it kept raining. Anyone who asked me what to wear to the party that morning, I said to wear boots and stay the hell away from heels. They lawn didn’t need to be aerated. After setting up for most of the party, I went home with my friends from college who came in for the party and we all rested. We arrived at the party an hour before it started to help with any last minute things. When the clock hit 5 o’clock something happened. The rain stopped and the clouds opened to reveal blue skies and sunshine. We all cheered and got ready to start the party. I spent the night walking back and forth from the entrance and the tents greeting friends, family, and anyone who came to the event. It was one of the few times where I actually knew almost everyone there and it was great. I loved being able to talk with everyone and greet him or her. Everyone had a huge smile on their face and was excited to be there. I made sure to eat dinner before my speech. Noting worse than giving someone who is hangry a microphone. I quickly snuck into line with family friends and made sure to eat dinner. After I ate, my cousin quickly grabbed me and we went to the photo booth area. We rocked the sombrero and tiger cowboy hat look and took our pictures. Then another friend wanted me take pictures with them too. All the pictures that people took at the photo booth were hilarious. Yes, I saw all of them and so can everyone who looks on the website of the person who took them. Then the time came for the speeches. I, of course elected to go last. No way was I going first. Our host spoke first and then the COO from Ulman spoke. I was handed the microphone. I started speaking and I heard my sister shout at people for being loud. The sarcastic sarcoma quickly came out of me and after cracking a joke I launched into talking about my story. I had not prepared anything, like I said before, and it all flowed out of me. Besides the occasional joke I spoke about my experience. When I finished talking you could have heard a pin drop. Good thing I didn’t tap the microphone and say, “is this thing on?” The rest of the party was filled with an ice cream bar, laughter, and listening to the band my cousin plays in. I talked with more people, thanked them for coming, and sat down for a little while. The party was the most fun I have had in awhile. There was laughter, positivity, and support from family and friends. The major comment I got from several people was that they never thought about young adults with cancer. Success isn’t measured by how many people came to the event; it was the raising awareness for the Ulman Cancer Fund and the work they do everyday.
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When I found out that I had “the cancer” one of the first things I thought was: how are my family and friends going to take the news? The last thing everyone knew about me and my life was that I was moving and starting my teaching career. I didn’t know the right way to call everyone out of the blue and say, “oh by the way change of plans; I have cancer and am staying home.”
The first couple of phone calls were hard, especially to my close friends and family. There is only so much you can say and I had to remember that they needed a couple minutes to absorb what I just told them. That’s the one major thing your doctors forget to talk to you about. They don’t give you a guide of how to tell family and friends about your diagnosis. There was no “idiots guide to telling friends and family you have cancer”. I am lucky to have a tight knit family who I knew would support me through everything. I knew that I could count on my mom and sister for anything and that they would always be there for me. I don’t know where I would be today without them. If I didn’t feel well or needed anything, they were there for me, no questions asked. My mom went to every appointment, scan, and anything else doctor related with me. My sister sent me tons of random items while I was in and out of the hospital and tons of hysterical cards. There are only so many inspirational cancer related cards. She’s currently pursuing her Ph.D. in Systems Engineering in Washington DC and I couldn’t be more proud of her. I told her to not put her life on hold because I have cancer and that she needed to stay in school. Anyone who doesn’t agree with this can, “deal with it”. I made sure both of them didn’t wrap their lives around my illness. The rest of my family supported me through everything. Anytime I was in the hospital my grandparents sent me sunflowers and would come to visit. My cousins always checked in on me and would send cards. I knew if I needed anything I could call or text them. My one cousin sold my bracelets while she was at school. Probably one of the coolest photos I got was of her sorority sporting my bracelets in support. I always love going to family functions and seeing who is sporting my orange bracelet. Yea that’s right family, I keep track of who has and hasn’t been wearing my bracelet. If one day half of our family has gone on vacation and you weren’t included, look at your wrist. No bracelet - no ticket to paradise. Then it spanned out to friends near and far. I had people contact me from college, high school, and anyone who knew my family and me. When I launched my online page that keeps people up to date on what was going on with my life, we were greeted with tons of positive messages and support. People that I hadn’t heard from or talked to in years were ready to help out or offer words of encouragement and support. They offered to make us meals, watch our dogs, and sent tons of cards. It was as if a trumpet sounded and the troops began to form. It’s a shame I didn’t have a horse then because that would have really gone with my whole Civil War themed gathering the support troops photo. I was lucky enough to have a group of friends I met in college. They were always there for me and talked to me on a regular basis. If I needed anything I knew I could call them. Whether it is a donut cake, advice, hot dogs, a good laugh, a bathroom story, or someone to call when I was upset. I knew they would answer the phone. We all come from different states but you would never know it. I love when they come to visit because we always have a good time together. I was lucky to meet someone who had just gone though what I was about to experience. I met her though a friend and I started texting her asking random hospital or port related questions. Everyone doesn’t know that wearing a tank and zip up hoodie is a much better option to wear when they access your port. It was someone who knew exactly what I was going through because she had walked the same path. She was more than willing to answer my questions and offer support. We quickly grew into fast friends and ended up talking on a regular basis. She always made sure to check in and visited me in the hospital when she could. She went with me to “look the same feel worse” seminar. Then there was the group of people who ran for the hills. They took one look at my cancer and me and ran away screaming. Well not literally. It was the strangest thing. One day we were talking all the time and the next nothing. The silence was horrible. I felt as if they had taken the string that connected us and cut it sending me flying backwards. After everything I had done for some of these people and the support I had given them through anything, I was shocked. I always thought that if the tables were turned they would be the first to run and help. Wrong. Friendship is a two way street and I realized that I was the one doing all the work. They only contacted me when they wanted or needed something from me. I quickly learned that sometimes the people who you thought you could count on were those who would rather stare at a cell phone screen then ask how you are doing. Support is the most powerful tool for anyone. Knowing that you have a group of people behind you willing to help is the best medicine. When you are fighting a disease on a daily basis you need more than the medicines your doctors give you. Forget the Debbie downers, negative Nancys, and complaining Carols. Find those people who are willing to stand next to you and be part of your bizarre story. When I found out that I had “the cancer” one of the first things I thought was: how are my family and friends going to take the news? The last thing everyone knew about me and my life was that I was moving and starting my teaching career. I didn’t know the right way to call everyone out of the blue and say, “oh by the way change of plans; I have cancer and am staying home.” The first couple of phone calls were hard, especially to my close friends and family. There is only so much you can say and I had to remember that they needed a couple minutes to absorb what I just told them. That’s the one major thing your doctors forget to talk to you about. They don’t give you a guide of how to tell family and friends about your diagnosis. There was no “idiots guide to telling friends and family you have cancer”. I am lucky to have a tight knit family who I knew would support me through everything. I knew that I could count on my mom and sister for anything and that they would always be there for me. I don’t know where I would be today without them. If I didn’t feel well or needed anything, they were there for me, no questions asked. My mom went to every appointment, scan, and anything else doctor related with me. My sister sent me tons of random items while I was in and out of the hospital and tons of hysterical cards. There are only so many inspirational cancer related cards. She’s currently pursuing her Ph.D. in Systems Engineering in Washington DC and I couldn’t be more proud of her. I told her to not put her life on hold because I have cancer and that she needed to stay in school. Anyone who doesn’t agree with this can, “deal with it”. I made sure both of them didn’t wrap their lives around my illness. The rest of my family supported me through everything. Anytime I was in the hospital my grandparents sent me sunflowers and would come to visit. My cousins always checked in on me and would send cards. I knew if I needed anything I could call or text them. My one cousin sold my bracelets while she was at school. Probably one of the coolest photos I got was of her sorority sporting my bracelets in support. I always love going to family functions and seeing who is sporting my orange bracelet. Yea that’s right family, I keep track of who has and hasn’t been wearing my bracelet. If one day half of our family has gone on vacation and you weren’t included, look at your wrist. No bracelet - no ticket to paradise. Then it spanned out to friends near and far. I had people contact me from college, high school, and anyone who knew my family and me. When I launched my online page that keeps people up to date on what was going on with my life, we were greeted with tons of positive messages and support. People that I hadn’t heard from or talked to in years were ready to help out or offer words of encouragement and support. They offered to make us meals, watch our dogs, and sent tons of cards. It was as if a trumpet sounded and the troops began to form. It’s a shame I didn’t have a horse then because that would have really gone with my whole Civil War themed gathering the support troops photo. I was lucky enough to have a group of friends I met in college. They were always there for me and talked to me on a regular basis. If I needed anything I knew I could call them. Whether it is a donut cake, advice, hot dogs, a good laugh, a bathroom story, or someone to call when I was upset. I knew they would answer the phone. We all come from different states but you would never know it. I love when they come to visit because we always have a good time together. I was lucky to meet someone who had just gone though what I was about to experience. I met her though a friend and I started texting her asking random hospital or port related questions. Everyone doesn’t know that wearing a tank and zip up hoodie is a much better option to wear when they access your port. It was someone who knew exactly what I was going through because she had walked the same path. She was more than willing to answer my questions and offer support. We quickly grew into fast friends and ended up talking on a regular basis. She always made sure to check in and visited me in the hospital when she could. She went with me to “look the same feel worse” seminar. Then there was the group of people who ran for the hills. They took one look at my cancer and me and ran away screaming. Well not literally. It was the strangest thing. One day we were talking all the time and the next nothing. The silence was horrible. I felt as if they had taken the string that connected us and cut it sending me flying backwards. After everything I had done for some of these people and the support I had given them through anything, I was shocked. I always thought that if the tables were turned they would be the first to run and help. Wrong. Friendship is a two way street and I realized that I was the one doing all the work. They only contacted me when they wanted or needed something from me. I quickly learned that sometimes the people who you thought you could count on were those who would rather stare at a cell phone screen then ask how you are doing. Support is the most powerful tool for anyone. Knowing that you have a group of people behind you willing to help is the best medicine. When you are fighting a disease on a daily basis you need more than the medicines your doctors give you. Forget the Debbie downers, negative Nancys, and complaining Carols. Find those people who are willing to stand next to you and be part of your bizarre story. When you take a medication there are always the pros and cons. There are the various ways it will help and the long list of side effects associated with taking the drug. I always air on the side of caution if this list of side effects is ridiculously long. Nothing is more exciting than reading a book or website that lists all the bizarre and terrifying things that may or may not happen to you. It’s like reading a Stephen King novel, except at the end of the day you can close his book and it’s finished.
I started taking my oral chemo medicines in July right after I finished camp. I started with two pills a day then increased to three. The only major differences I noticed were the extra trips to the bathroom, being tired easily, not eating nearly as much, and the new hair color. I would get some soreness in my gut but it was nothing different than I was use to. It wasn’t until my medication was increased to the maximum dose that my body retaliated. There is nothing worse than being woken up in the middle of the night with a horrible pain in your stomach. I knew something was up when it wouldn’t go away. By mid-morning I was on my way to the cancer center and wasn’t happy at all. I feared for anyone who might have to interact with me today. One wrong look, comment, or anything and I was ready to transform into the hulk. I wish I wore a sign that said, “Caution: severely pissed off cancer patient in pain.” I was in no mood for chitchat or anything. I wanted to figure out what was wrong and treat the pain. After informing my nurse of my one shot policy when trying to hook up an IV, she hooked me up to an IV with fluids and other medicines to see if they would help. At that point my level on the pain scale was an eight and I was more than willing to take some pain meds. After being given three oxycodone pills I thought the pain would go away. Usually you give me one of those pills and it knocks me out so I was convinced three would do the trick. Wrong. The pain stayed and felt worse. Thankfully the nurses knew something was up and suggested we go to the ER. You know you have been to the ER frequently when you recognize the nurses and doctors. As I was being wheeled in I recognized several people that I had met over the past year and they all greeted me by asking how I was doing and why I was there. After being ushered into one of the many exam rooms, I was given a small dose of morphine and all I can say is that stuff is strong. Thank God I was lying down when they gave me the small dose. I quickly texted my thoracic surgeons who did my lung biopsy to let them know what was going on. Within minutes they were at my bedside. If it weren’t for them I would have probably sat there for hours just waiting for the ER docs to figure out what to do with me. They were in and out of my room the rest of the afternoon telling me what was going to happen next and making sure everything was ok. It was determined that I would have a lovely CT scan. I was promptly handed two medium soft drink sized cups filled with this red liquid. It looked absolutely disgusting. I was told to drink them over the next hour in preparation for the scan. Since I hadn’t eaten anything all day we didn’t have to worry about the whole fasting thing. As the CT person was walking out of the room he warned, “oh by the way this drink will give your horrible diarrhea either today or tomorrow.” Every patient’s dream is to hear that. Nothing like a nice cleanse to jump-start your day. My scan showed that my stomach was severely pissed off due to the increase in my chemo pills. I was told that I would have to stay in the hospital for a couple days to get IV meds, probiotics, steroids, and anything else you can think of. I was more pissed about the fact I couldn’t go home and that I didn’t have anything for the hospital. Luckily we live close enough to the hospital that my mom was able to run home and grab everything. Anyone who thinks that you will sleep while you are in the hospital has obviously never stayed in a hospital. The only exception is the chemo floor I was on when I was inpatient. They let you sleep. No 4 am wake up call to take your blood. I love when the blood people walk into your room turn on the lights and yell, “I’m here to take your blood!” I always wanted to yell back, “ Thanks for the announcement. Perhaps next time you should invest in a mega phone.” I don’t mind when my doctors and their medical team come early because I know them and see them on a regular basis. When my doctors come and visit it never is just about my health. They are always asking about my life outside of the hospital and that’s why we get along so well. They are my medical family. Plus they know the most up to date information about me. I am not just some medical chart in the computer. It’s the random people who barge into my room and talk about me and my, “condition” only to my mom. I want to wave a huge flag and say, “um, excuse me, last time I checked my name was on the chart and I can hear everything you’re saying about me." I spent my days in the hospital watching TV with my mom and welcoming the occasional visitor. No one knew I was in the hospital except family and a few friends. If you haven’t already figured this out I like to fly under the radar. I just wanted to get my meds and start feeling better. In the end it was my chemo pills that upset my stomach and it was determined that I would go back to the three pills a day once everything calmed down. In the end all I could really do was blame the chemo and know that my body could tolerate the lower dose. I have enjoyed my little chemo vacation. Since I have been taking the steroids I have definitely been eating more. It’s a good thing I don’t live near the Vegas strip because I am pretty sure I would put the majority of the, “all you can eat buffets” out of business. I stumbled into the barn, which I refer to as my second home, four years ago. I was happily greeted by a husband and wife duo who were more than willing to welcome me into their very large barn family. I spent my first summer taking lessons with a school horse and learned the basics of walking, steering, trotting, and stopping. It wasn’t until the end of the summer that I got to ride Austin who I would lease for two summers before I met Joe.
It was in May of this year when I heard about Joe. I had just been re-diagnosed when I was sent a picture of a horse in NY. I was sitting in the car on my way to a wedding when I got the photo. I had just talked with my oncologist and learned things were a lot more serious and that I would have to go to Boston for a second opinion. My trainer had randomly seen Joe’s picture online and knew right away he was the horse for me. However, the timing just wasn’t right. I was scheduled for a biopsy and wasn’t allowed to ride. Needless to say I was pissed. But it’s funny how things work out. It was two weeks after I had my biopsy that my mom got the phone call from my trainer saying Joe was still for sale. He wanted us to go see him on that Sunday. I was more than ready to go meet Joe. By Sunday, we all were on I-84 headed to a barn in NY to meet him. This was the first horse I had ever looked at and I had no idea what to expect. As soon as I walked through the door and saw Joe on the cross ties I knew he was the horse for me. My trainer still talks about the look on my face when I saw him. I watched another girl ride him and show me what he does, and then it was my turn. I hadn’t ridden in over a month and was definitely out of shape. We must have looked hilarious to everyone when I was trying to figure out how to get him to move. We were swerving everywhere and he refused to trot. I was handed a crop to use but I had never used one in my life. After getting a pep talk from my trainer and taking several deep breaths to calm my nerves he started to trot. After I got off, I walked him around the ring and he followed me as if we were playing follow the leader. A week later he was in the trailer and heading to his new home. Joe is currently residing at his permanent home at the barn where I ride. He goes by several names that include Joe, Joseph, and occasionally we call him DiMaggio, which is his show name. Yes that’s right his full name is Joe DiMaggio and, no, he doesn’t play baseball. He is loved by everyone and is always teaching me something. I am finally able to get him to canter which is by far my favorite thing to do with him. Sometimes it takes us a few times to get it started but we eventually get it. It’s like being on a rocking horse; the only major difference is that the fall from Joe is a lot higher than your average toy. If we aren’t in the ring you can find us on the road walking or on the grass. Joe has fully embraced our groom and graze days. My barn family consists of a large group of people who come from all walks of life. If it weren’t for riding, I would have never found the tumor behind my knee or would have never become a part of this extended family. These are people who have stood by my side through think and thin, hair and no hair, and on days when I would go to the barn looking white as a ghost. They would let me groom horses when I could and watch lessons. Plus they threw me an awesome surprise party the day we got Joe. What’s better than having a BBQ with your extended barn family? Riding is a huge part of my life and it helps me feel normal. When I walk into the barn, I don’t have to deal with doctors, tests, scans, or anything related to a medical world. I can enjoy my horse and the people who surround us. Everyone understands my sarcastic humor and they all have to put up with it on a daily basis. As soon as I walk in the barn and yell Joe he quickly pops his head out of his stall. I like to think that he knows who I am, the girl with the crazy curly hair. However, I am pretty sure he does that for anyone who is within walking distance thinking they will give him food or treats. In the words of a friend in NY, “courage, strength, and loyalty are all taught from the heart of a horse." |
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