It’s hard to believe that a year has gone by without Olivia. Sometimes it feels like forever and sometimes it feels like it just happened yesterday. Thinking about the loss of her can take our breath away in an instant. I know that the loss of my child will be with me for the rest of my life. I am surrounded by her courage, strength, love, humor, laughter, joy and pain. She lives in Sam and in me. We knew her the best and we miss her with all our hearts and souls.
If Olivia is reading this, she’d say, “What are you doing? People don’t want to hear your sad tune….move on….get to the good stuff!”
She’s right. We want to tell you about this past year by using excerpts from her blog. Olivia started her blog in August 2014, a year after she was diagnosed with synovial sarcoma. It’s amazing how many of her writings about living with cancer are similar to living with grief. We hope you understand the correlations and enjoy reading Olivia’s wit and insight again. While Olivia passed away a year ago today, one month after her 28th birthday, we are all lucky to have her voice continue through this blog. Her words have been a comfort and an inspiration to us.
From August 23, 2014 “Say What?”
People react to news in different ways and boy the things they say are bizarre. Throughout this past year, people have reacted to my news in various ways. I sometimes wish I could record or videotape some of the things people have said to me. They range from happy to sad, shocking to serious, and everything else you can imagine.
From April 4,2017 “Babydoll”
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 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.
From July 11, 2017 “The Fog”
I have been catching myself lately worrying and thinking about the future rather than staying in the present moment. My mind will wander off thinking about something I need to be doing tomorrow or next week or some worry I have that has nothing to do with what is going on around me. Some days are a hell of a lot easier than others. I’ll find myself feeling fine then all of a sudden a tidal wave will wash over me and cloud my judgement making me feel as if I am grasping for air. We all have days when we have setbacks or things just aren’t going our way. What we have to remember is that it’s just a bad day and not a bad life. One of my good friends once told me that some days we just have to ride the wave.
From July 21, 2016 “Back Again”
When you don’t talk about what you have been through, it eventually catches up to you. I was suppressing my emotions to make everyone else feel comfortable. For me it is usually in the quiet moments when I have lots of free time and I am not in my normal routine. It is when I am in places where I feel most at ease and comfortable, that my anxiety comes out.
From April 2, 2017 “YAP Conference”
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.
From September 15, 2014 “Who You Gonna Call"
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.
From December 18, 2018 “Montana”
If anyone knows me, my family will always come first and our friends that have become like family. We all have had our shares of ups and downs. The only difference is that when something happens to us we dust ourselves and get back up. At the end of the day what matters most is how you feel about yourself and whom you choose to surround yourself with. Pick people that support you and love you for who you are. People may come and go in your life but the good ones will tough it out with you. In the words of Dr. Seuss, “Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind.”
Rather than finding the right words to close, we’re going to end with one of Olivia’s quotes. Thanks for reading and thank you to everyone for your support, prayers and love.
From January 5, 2017 “Silver Lining”
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”.
Olivia’s updated blog site: thesarcasticsarcoma.com
“You look like you are going to throw up,” was what I heard my trainer say after I rode over a couple of jumps in the schooling ring. It was my first time back in a show since June. I was scared shitless. I thought everything would come back the first time I walked back in the ring. Just like getting on a bicycle after taking a break, I thought the same would apply to getting back on Joe and jumping at a show.
We had gone over a couple jumps at the barn where I ride at home before this. We hadn’t done anything crazy or out of the ordinary. Since my accident over the summer, I wasn’t really cleared to ride until October. The first couple times I got back on Joe, I wasn’t sure what he would be like. Was he still mad at me from what happened in July? Would he take care of me? Is he stopping at certain jumps because he doesn’t trust me anymore? Is he trying to protect me from falling off again when he stops? Did he think I replaced him when I bought my other horse?
When I got back to riding, Joe and I started from the bottom and worked our way up. I quickly learned that I was out of shape. We spent the first couple days trotting and then cantering a little. We would go over ground poles here and there and had a few flat lesson refreshers.
One weekend I went to the barn really early to ride Joe. I was in the ring with another rider who was having a lesson. My trainer set up a small ground pole and said I could go over it a couple times if I wanted. We eventually got into a groove and she started to make it a little higher off the ground. Now when I say higher, it was only a couple inches of the ground; high enough I could skip over it myself. Then when I got comfortable with that height, she made it a little higher. Eventually she had me go over a jump she had set up in the ring. It was definitely less than 2’. It wasn’t like she set up a 3’ jump and yelled go for it! Yea no, that isn’t how we work. Plus, I’m pretty sure Joe would say, “Yea you go jump that yourself and I’ll watch.”
I went over the jump and for the first time in a while I was comfortable. What I should have realized all along was that Joe was right there with me. He was giving me the wings I needed to fly over the jump. When I tell people we jump they automatically assume it’s the Olympic level. We are nowhere near that. We rock the 2’-2’3” these days and I’m ok with it. I have to get back and be comfortable with that height. I have to build up my confidence and realize that Joe will be there. Now yes, there are times where I’ll do something and Joe lets me know his opinion. He is able to forgive me when I make mistakes and, trust me, it happens a lot more than it should.
I was glad to be back on Joe for our first time back in the show ring since our accident. I have to admit I was still nervous before we took that first step in the ring. But that’s the thing about Joe, he knows what to do and knows his job. Right before I asked him for the canter transition to begin our course I said, “Joe it’s all up to you now.” Thank the Lord he picked up the canter. If any of you have been with us from the beginning, you know that can be a struggle some days. He just started to canter as if we had never missed a beat. I talked to him the whole time around the ring as we lined up to each jump and got ready to jump in and out of the various lines. Anytime I went by the in gate I’m pretty sure people thought I muttering to myself. The best was when I started singing “Killer Queen” because that’s Joe’s jam.
In 2017 McLain Ward was the USEF Equestrian of the year. He said in his speech that, “Without the horse, none of this would be possible. We owe them our lives. They give us so much and ask only for basic kindness in return. I believe that horses and humans have a connection that draws us to each other. I believe, in their own way, they know we need them, and they are pleased to be our partner, whether it be in work or sport. We need to remember never to take advantage of this privilege of working and living with horses for granted. To never lose our appreciation for what they have given us throughout the history of time, and to be sure that their relevance in our society does not fade away. This is our greatest responsibility as equestrians.”
At the end of the day, it doesn’t matter how many ribbons adorn your stall or how you should’ve won that class because of x, y or z. It’s all about the relationship with your horses. You wouldn’t be where you are without them. They’ve been with you from the beginning. Even when they stop at a jump, there is a reason behind it. Joe can sense when I am nervous. Our most recent flop included him stopping at a jump and me falling off; but this time, I landed perfectly on my feet like an Olympic gymnast. I even walked out of the ring waving like the queen to the people staring at us while saying, “Why yes I did fall off my horse but I am ok!” With how many falls I’ve had in the past 6 months, it’s about time I landed on my feet.
Thank your horses because without them you wouldn’t be in this sport in the first place. They don’t care how many ribbons you’ve won or if you look the best. All they ask in return is for unconditional love. They forgive us when we make mistakes and are always eager to greet us at their stall door. If I’ve learned anything with Joe and Cor, it is that no matter what happens they will always be there for you. Unless it’s feeding time, then you best get out of their way.
Have you ever thought about the relationships in your life like a revolving door? When you walk into a big department store or hotel with one of those doors, you can take a step forward, push on the door and walk in through to the other side. Or, you can choose to keep going around in circles like Buddy the Elf until you have to stop because you’re so dizzy. You can also start walking through, get to the other side, and then decide you don’t want to go in anymore. Then you’ll continue in your circle until you’re back to where you started.
Relationships in life are a lot like walking through a revolving door. We have the people who are constantly in our lives and we talk to on a regular basis. They walk through the door and welcome you with open arms. You know that with a drop of a hat you can call them for anything and they’ll be there for you, no questions asked. Although you don’t see them everyday, you just know they are there.
Then we have the other type of people - the kind who walk through the door, see what’s on the other side, and return to where they started so they are back to their reality. They are the kind of people who say they’ve seen you or talked to you when they haven’t. They are the people who see you from a distance and proceed to tell the world how you are because they saw you from afar. They make it all about themselves and use us for their personal gain. They never ask about your family, friends, or anything in your life. It somehow always turns back to them. Just like the revolving door in the store, their lives revolve around them.
We all have been exposed to these kinds of people in our lives. Recently I have been doing a lot of thinking about the people with whom I have chosen to surround myself with. If you haven’t figured it out it’s the people who walk into the store and immerse themselves into their surroundings. They are the supportive ones and the ones who are there for you. They lift you up instead of tearing you down. They accept your fears, your quirks, your humor, and the things that make you who you are. They get your jokes and thrive on them or help extend the joke. That’s probably one of the best qualities in my opinion.
Then we have the revolvers. Those are the ones that cut off communication entirely. I found this happened a lot with people when I was first diagnosed and it continues even now. Radio silence. They would see me in public and visibly duck or avoid eye contact. Yep, I’m that asshole who waves to them like “Yep, I know you saw me so I’m about to make this shit real awkward fast.” I could give a shit. I usually will start doing the robot dance move at them or pretend to be frozen like in a game of freeze tag. To those types of people: “Please don’t update others on how I’m doing just because you saw me from a distance but neglected to acknowledge me. If you want to know how I am, just ask”. Most of these people claim I stopped talking to them too. Well no shit. Eventually when you keep talking to a wall, it gets boring when it doesn’t respond so I’ve stopped. I’ve made the choice to break the chain that attaches me to them and move forward without them. It’s my way of saying “What you did sucks, and I refuse to be connected to it anymore.” Trim the weeds, but keep the flowers.
Who is part of your support network? Is it filled with your family? Friends? Strangers? Animals? I can say that mine is filled with family, friends who have become like family, my medical team who are stuck with me, my horses, my dog, and new friends who I have met along the way. If you don’t like what I have to say, take a number, get in line, and join all the other complainers. I’ll be with the other people who have decided to forgive assholes and move forward with our lives.
If I let how people, places, or things dictate how I felt about my life, I would not leave my house. Well, I am a homebody so maybe that is not the best example. I have no control over a lot of things in my life - especially when it comes to how I feel some days. I have no control over someone else’s opinion and how they look at me. They see me through their eyes. Just like the revolving door at a store, they can choose to enter my world and be part of the story or keep walking and not be in it at all. Don’t worry, I didn’t forget the people who are like Buddy the Elf who keep going round and round in the door. They are put here to make us laugh and show us how to enjoy the things in life we think are dull.
Surround yourself with people who make you laugh, build you up, and challenge you. Get rid of the ones who bring you down, ignore you, or always complain. The most important people in your life are the ones who will be there with you through it all. It took me a while to realize this. It isn’t about the quantity of friends you have, it’s about the quality of friendships you have cultivated. We all walk in and out of each other’s lives for a reason.
In August of 2017 my family took a vacation to Montana. When we left for our trip I was unsure about a lot of things. I was anxious and nervous all the time. I was unsure of my treatment plan or what would come next. I was also trying to figure out the right mix of meds to help with my fogginess. I had been put on a low dose of a medication to help prevent my migraines. My family quickly noticed a change in me and I didn’t believe them. I didn’t realize how bad I was until I went to see my oncologist and he said he felt like he was talking to me through a screen. I immediately was taken off the medication.
I spent most of that summer at the barn or shows with Joe. I just didn’t feel like myself. I knew it was bad when I didn’t even want to go out and ride. Luckily my family helped me and got me out of the house or would encourage me to go ride. I slowly fell back into a routine that included getting up and getting my ass to the barn to ride. This was a core part of my life that helped give me a reason to get up and get moving.
As I packed my bags and got on the plane to Montana with family, I wasn’t sure what to expect. I was excited, scared, nervous, anxious, pretty much every emotion you can think of. Whenever I travel my biggest fear is what would happen if I got sick. I would be outside of the comfort zone of my hospital system and the doctors who knew me and my story.
When we arrived at the resort I felt something I hadn’t in a long time. I felt like I was coming home. It was like seeing an old friend after a long time and they welcome you with open arms. We checked into the lodge we were staying in and I immediately unpacked. I loved the design of the house and the huge front porch that overlooked the landscape of the ranch. It was quiet and no one knew who I was or the baggage I was carrying around.
To say I enjoyed Montana would be an understatement. We spent the week doing various activities that ranged from fly-fishing on the Blackfoot River to trail riding. I thoroughly enjoyed anything that involved a horse. I went on a trail ride one day with my brother-in-law and we also did a cattle drive on another day. I had a blast with my horse, Midnight. You could tell that he loved his job. There’s nothing like cantering through an open field, walking along a stream, and marveling at the scenery in front of us to center your soul. We even did a twilight trail ride with my mom and sister. We went on a high ropes course, an ATV tour, went to the spa, and even took a tour of the entire resort one afternoon. You bet your ass I asked for a tour of their equine facility. The list could go on and on of all the stuff we did.
We spent our various nights at dinner at the main lodge that overlooked the vast landscape. There was a BBQ on the lawn one night that included live music, various activities on the lawn, and a s’more-making contest. While at the resort you quickly recognize other families from the various activities or when you go to the main dining area for meals. We got to know some of the families that were there for the week on vacation like us. We met one family whose child made it into the top 3 of the s’more-making contest. Yes, I was that person who was cheering for him like crazy when they announced he was in the top 3. Typically at horse shows people stare at me appalled when I shout like I do. Clearly it hasn’t fazed me. I always picture myself like Julia Roberts in Pretty Woman when she yells, “well done”, at the polo match followed up with a, “whoop whoop.” We also went to a chuck wagon dinner one night too. The resort was filled with the kindest people I have ever met. They treated you like you were part of their extended family. I could go on and on about this amazing place for pages upon pages.
What I loved most about Montana was that it helped to shift my perspective. I was able to see the whole picture again. It allowed me to marvel at what was in front of me. It took me going to Montana to realize that the marvel is wherever you are if you allow it to be. I mean it was one hell of a landscape that helped me click back into place. I woke up eager every morning to throw on my layers and just sit on the porch. I sat in silence and just looked out over the scenery. That quiet that I had been longing for had always been within me. I was letting all the outside distractions and noise take my attention rather than marveling in the moment.
We all have times in our lives when we are too focused on looking at what happened or what will happen to us. We don’t just focus on the now and what’s happening right in front of us. It’s like riding a horse backwards or being afraid to jump again because of the fear of falling off. If you are constantly comparing your past to your present, you will never be in the moment. You’ll waste your energy on always trying to be perfect and compare yourself to others. Don’t be like those people who make it their mission to always be right. They are the people who always one up you or make it all about themselves. Yea, get those assholes out of your life. While I was at a weekend at Kripalu with my sister, Elizabeth Gilbert said, “There is always one asshole in the group. If you can’t figure it out then its probably you.”
For me, Montana was where I found my groove again. I loved being able to wake up in the morning, throw on a pair of jeans with my flannel and t-shirt and finish off the look with a good pair of boots. Not to mention a hat. Even though I had hair when we were there, I still had to protect my skin from the sun. The trip slowed my life down and it made me reevaluate what was truly important to me. If anyone knows me, my family will always come first and our friends that have become like family. We all have had our shares of ups and downs. The only difference is that when something happens to us we dust ourselves and get back up. At the end of the day what matters most is how you feel about yourself and whom you choose to surround yourself with. Pick people that support you and love you for who you are. People may come and go in your life but the good ones will tough it out with you. In the words of Dr. Seuss, “Be who you are and say what you feel, because those who mind don't matter and those who matter don't mind.”
In July I had a horseback riding accident while riding Joe. It started like any other ordinary day at the barn. I tacked Joe up and got ready to be part of a lesson with two of my friends. We did our usual routine in the lesson by warming up before we started jumping. We went over the jump the first time and on the landing Joe tripped a little but, luckily, I caught myself. We proceeded to do a mini course in which I went over one jump and then went over the second. All I can remember is my leg going too far back, me leaning forward, Joe landing, and then him going left and me flying to the right. I hit the ground hard.
Next thing I knew I felt the pain of my fall and I started screaming. They were not just random words; I screamed the f-word a ton of times. I knew something was drastically wrong with my arm/shoulder but didn’t know the extent. When I landed I must’ve landed square on my upper arm/shoulder area. My trainer came running over and assessed the situation. Luckily Joe is the type to just stand over me. While I was screaming in pain he just hovered over me looking at me thinking, “I wonder how she got there?” My trainer propped me up and tried to calm me down. I had hit my head pretty hard and I felt woozy. I knew to keep my eyes closed but to keep talking. I remember hearing one of the kids say “should we call 9-1-1?” and of course I responded with, “don’t even think about it.” Next he called my mom.
When my mom answered the phone she thought it was a joke. She quickly heard me yelling in the background, “this isn’t a joke so get your f-ing ass out here immediately.” Then my trainer called his wife, my other trainer, and we waited in the ring. One of the other riders grabbed Joe and took him down to his stall to remove his tack. Within minutes I heard my trainer’s truck come down the driveway and she was next to me. Mind you her husband, who had witnessed the accident, was still propping me up. It was the only way to keep me comfortable. She took off my helmet and boots and put my shoes on. By that time my mom got to the barn and they were helping me get up. Because of my knee surgery I have trouble getting up and usually use my right arm to prop up. After much help they finally got me on my feet and I took a couple steps. That’s when I felt another pain in my hip area and noticed I had trouble putting weight on my right leg. After taking a couple steps I got woozy and said I couldn’t walk any further.
They quickly decided that the best option to get me to the car was in a wheelbarrow. Yes, the same wheelbarrow that was just used to muck shit out of the barn. Thankfully they emptied it before placing me inside. They wheeled me up to my mom’s car and we headed to the hospital. That was the longest car ride of my life.
I basically threw myself in a wheelchair from the car and told my mom to get me in there now. Now imagine me going into the ER. I was covered from head to toe in dirt, soaked in sweat, and not a happy camper. I thought I had just dislocated my shoulder. Next thing I knew they had me in the trauma bay and I was retelling the story of what just happened. The ER doc was really nice and so were the nurses. I got on the trauma bed and then the trauma team came.
There must be some big button they press when a trauma patient comes in because next thing I knew I was surrounded by a trauma team. They were dressed from head to toe in gowns, masks, and gloves. When they filed into the trauma area it reminded me of when football teams run out onto the field. They were ready and prepared for anything. Next thing I knew I felt someone cutting my shirt off and then my sports bra. Not even two minutes went by before they were cutting my clothes off. I didn’t realize it was spring break to them when it came to cutting my top off. Next they wanted to cut off my breeches. That’s when holy hell broke lose. I started screaming at them, “ DO NOT CUT MY PANTS OFF.” I was ready to use my legs to kick the shit out of them if they tried to cut those pants off. Anyone who wears breeches knows that when you find a goof pair that fits you correctly and you look good, you hold onto them no matter what. Thankfully the ER doc was a horse person and understood my craziness. They shimmied them off.
I was rolled on my left side and they pushed down from my neck to my entire spine. Once again the scissors came to visit but this time it was to cut off my underwear. I looked over at my mom and said, “well that escalated quickly”. Meanwhile they were trying to put an IV in my arm and take an x-ray. At this point I had my right arm held in a death lock with my left arm. It was holding the bone in place. The x-ray techs tried to move my arm and I started screaming, “mother f-er what are you doing?” It hurt so much. If I had a swear jar for how many times I used the f-word that day it definitely would exceed $1,000. I also had CT scans done to see if I did any other damage. The best was when my mom said the chaplain walked by while I was yelling the F-word like crazy.
Finally we saw the x-ray of my arm and in typical fashion I said to my mom, “well no wonder my arm hurts the bone isn’t in the arm area anymore.” I was told that I had broken the head of my humerus off my shoulder. I would need surgery to repair it. I also had sustained a concussion, some broken ribs, and a small fracture in my pelvis. By the time this was all processed they said I would have to wait until Monday morning to have the surgery. They said I could go home but I’m pretty sure my mom was giving the trauma surgeon and his PA signals like there is no way I’m taking her home like this. I spent the weekend in the hospital falling in and out sleep, thanks to my drugs. My cousins and a couple of family friends came and visited me, which was really nice.
On the morning of my surgery they wheeled me down to the pre- surgery area. I answered all the questions and changed into the ever-glamorous surgery gown. My orthopedic trauma surgeon stopped by to check on everything before they took me back. When he asked if I had any questions I said yes and followed it by saying, “now don’t fuck this up.” My mom looked at me and her jaw dropped. Luckily my surgeon cracked a smile and laughed.
I went back for surgery and fell into a nice sleep. While I was being operated on my cousin and his fiancé sat with my mom and sister and brought them lunch. After surgery I was put in another room and spent the night in the hospital. I was told I would be using a cane to help me walk and that my arm would be in a sling for a couple weeks. I also was told I would not be able to ride for 12 weeks while everything was healing.
I spent the rest of my summer recovering at home. PT/OT came to my house for the first couple weeks. I had to rely on my left arm to do everything. My mom drove me everywhere. I went out to the barn to visit Joe. I went to watch Joe show at a horse show in NY a couple times. By the end of August I was cleared to do outpatient OT and drive again. I went to outpatient OT two to three times a week for three month. My arm has come a long way since the beginning.
Apparently when I have a horseback riding accident it couldn’t have been just a simple fall where I got up after I fell. Joe definitely knew I was out of commission when I would come to the barn with a cane and my arm in a sling. When I finally was able to start doing stuff with him, I started with just grooming. Brushing him and picking out his feet was a workout for me. My whole body took a major hit and needed a while to recover. I’m still trying to build up my endurance when I ride. Plus the cooler temps don’t help my lungs. I think brushing him was a great exercise for strengthening my right arm again and helping to improve my range of motion.
Even though I had a bad fall off of Joe, I am not getting rid of him. He is stuck with me forever. I recently had someone ask me if I was going to sell him since it was his fault that I fell off and got injured. I politely said no and corrected the person by telling her that it was my fault I fell off. I had leaned at the jump and my leg was too far back. Joe was like, “hell no girl I’m not saving your ass for that”. I wanted to ask them if they would sell a family member if he/she broke a dish or colored on the walls. For once I kept my mouth shut. In the words of Maury Ballstein, "what do we do when we fall off the horse? We get back on." I did what any sane person would do after a traumatic fall off a horse; I bought another one who is even bigger.
When is your next blog post? You haven’t posted to the blog in awhile. Why did you stop writing? How are you feeling? Do you still have cancer because you look good? How’s Joe?
These are usually the first questions I am bombarded with when I’m asked about my blog. Insider tip: I have never stopped writing. I am always writing. Sometimes it isn’t with a paper and pen its all in my brain. I know you’re probably shocked I have a brain and actually use it.
The last year has been one hell of a ride. It wasn’t that I didn’t want to write I was. I had ideas in my head and jotted them down in a notebook or on my computer. I just didn’t take the time to actually write them out or share them with the world. I wasn’t purposely not writing to leave you on a cliffhanger. I leave that to the movies and books.
A lot has happened in my life. Last year I was doing hard-core chemo as my treatment. I was spending a couple days in the hospital being pumped with chemo in hopes it would shrink the tumors in my lungs. I was run down, I was tired, and I wanted a break. My break came when I went to Florida for 5 weeks with my horse Joe. Nothing like a baldhead to make you appreciate hats especially in the Florida sunshine. In late spring I started a clinical trial in Boston and continued that for part of the summer. Spoiler alert it didn’t work. During all this I was showing Joe when I could and riding like always. We unfortunately experienced a huge loss in my family that took a toll on everyone. It was a shock to say the least. Then I had an accident on Joe where I fell off and broke the head of my hummers off my shoulder. Man at the rate I’m going I could probably write a county song.
But in all the sadness and turmoil there was a tiny light trying to shine through all the darkness. It came through me finding my second horse Cor. My majestic unicorn as I like to refer to him as. Yes he’s a grey and yes I know I swore I would never buy a grey horse but when I saw him I knew he was the one. It came through two new babies in our family. It came when I started back to my chemo pills and finding out they are shrinking my tumor. Per usual cautiously optimistic people. So don’t go planning a cancer free picnic anytime soon. That ship sailed a long time ago. In the words of my oncologist, “although your scans are still scary they’re better.” It came when I was driving and I heard the new song “Guiding Light” by Mumford and Sons. It was the perfect soundtrack for my life and the place I am in right now.
Thanks for sticking with me and reading the blog. I have decided it was time to breathe new life into it and bring it back. The crazy stories along with the people are still around. They haven’t gone anywhere. I swear we are magnets at a hospital or cancer center for bizarre stuff to happen. At least we laugh about it or use it to our advantage for a good joke. Finding the humor in everything has been my goal since the beginning. For example, when people call my Grandfathers with those robo calls or for a survey I take distinct pleasure in telling them he’s on a long vacation with family and will not be returning anytime soon. I’m waiting for the day someone asks for his address and I plan to give him the address at the cemetery with the plot number.
I hope you enjoy the blog and the plans I have for it in the upcoming months. I have to give a huge thank you everyone who has been there with me since the beginning. A huge shout out to a good friend for helping me launch the new website and helping me figure out this technology. Enjoy the blog and I look forward to posting my stories as well as having a section where friends I have met along the way can share theirs. In the words of the Grateful Dead, “Lately it occurs to me what a long, strange trip it's been.”
Losing your hair is never easy. No matter how much you prepare yourself for the idea of it, it still sucks. Your hair is part of your identity. It is one of the features that help to set you apart from everyone else. It can describe your personality. For example when I had white hair everyone just assumed I dyed it. Yea, once again people, that was from my chemo. I did not choose to dye it that color or to follow the fashion trend.
About two weeks, after my first round of this new treatment, I noticed my hair was starting to fall out. It followed the same old routine with my head first itching like crazy. Then after I showered I would notice little strands here and there. It eventually gets to a point where you’re able to pull out chunks easily. I let it go to the point where I couldn’t stand it anymore. I was able to pull out chunks like the thin man in Charlie’s Angels. Except I didn’t creepily sniff my own hair.
I called the place where I get my hair cut and set up an appointment to get my head shaved. My hair was driving me crazy and I couldn’t stand it anymore. Plus, I was paranoid that my hair would be left somewhere in a crime scene and then they would trace it back to me somehow. That’s what I get for watching Law and Order SVU with my uncle. When I got to the salon my hairdresser asked if I wanted to wash it first and I said, “sure”. After she was finished washing my hair she showed me how much hair had fallen out. Remember that scene in Enchanted when she’s cleaning the apartment and singing and the “happy working song”? Well my hair clump reminded me of when the rat pulls the hairball out of their shower drain.
When I finally looked at myself in the mirror I looked like I had a massive comb over on my bald spot. We both started laughing. She shaved the rest of it off and then rinsed my scalp. I immediately threw a hat on and drove out to the barn to ride. I was worried that my helmet wouldn’t fit since I didn’t have any hair. To my surprise my helmet now fits like a glove. After my ride I took my helmet off and gave Joe a treat. When I bent over to grab the wrapper he started to lick my head. Apparently my head looked like a big treat to him. Thank God he didn’t try to bite me or he would’ve been in big trouble.
My favorite reaction to my bald hair has to go to my friends, who are both under the age of 7. When I took my hat off to show them my friend said, “Where did your hair go? Is it in your hat?” Then she promptly told me to put my hat back on. Her sister asked why my hair fell out. When I explained it was from a medicine that she would never have to take, she responded with, “Oh then it must be a medicine for horseback riders.” Their reactions were priceless.
I’m still getting use to the no hair thing. One of my major pet peeves is when people think it’s ok to touch my head without asking. I don’t appreciate it and if you just ask, most of the time, I will say, “yes”. I have my signature hats ready to roll and have been wearing them. At least it’s getting colder out so I won’t feel weird wearing a beanie hat all the time. You know I am truly comfortable in a space if I take my hat off. I generally keep it on when I go places because as soon as people see my hair they know I have cancer and then give me the "I feel bad for you" look. I have worked really hard to try and live a normal life and be a cancer patient in disguise. Losing my hair makes me feel like I have a big arrow on my head saying, “she has cancer”. Good thing I have a nice shaped head or at least that’s what everyone keeps telling me. Plus, my bald Bitmoji is pretty hilarious.
While I was in the hospital for chemo I got a text from a friend asking if I would want to help her family harvest their honey this year. She was going to be away on a trip and couldn’t be home so she was wondering if I would be interested in helping out. I immediately said yes but it would depend on how I felt after chemo. I marked it on my calendar. The week of the harvest her mom texted me to see if I wanted to come. I said yes and that I would love to help out. I had no idea what to expect but was excited to see the process of harvesting the honey.
Full disclosure, I am not a bee expert so please forgive me if I do not use the proper bee terminology. On the Saturday of the honey harvest I arrived at her house and was greeted by her dog Gunner. I happily jumped out of my car and gave him a big hug. If you’ve ever met Gunner he looks like a golden retriever straight out of a L.L. Bean ad. I walked into the house and was taken to the honey harvest party that was happening in their garage. I walked in and immediately noticed that they were listening to the Avett Brothers radio on Pandora. The Avett Brothers are my favorite band and coincidentally theirs as well. I was greeted by her family and friends and then was handed an apron and a pair of gloves. By the time I got there the only apron left was classic white with flowers. Her mom was sporting the queen bee apron because she was the queen bee of the operation.
I walked around the garage and observed the various parts of the operation and learned about the process. Now, we all weren’t standing around outside in the beehive. The honey frames had been removed from the hive the day before and had been stored in the garage overnight. The first step was uncapping the frames with a hot knife. Honeybees preserve their honey by capping it in wax cells. In order to extract the honey you have to remove this layer. This is done with a knife that is heated. The heated knife helps to melt the wax enough to remove it. The knife is used to cut off the wax from the top to the bottom of the frame. Most frames have two sides to them so you have to remove it on both sides. After using the hot knife, if any cells are still not opened, you use a tool that resembles a comb to pick out the unopened cells. This is all done over a bin so that wax can be used to make something later. Any extra honey that drips out collects and drips out from the bottom of the container.
Next the frames are placed into an extractor. Inside the extractor are these mesh frames where a single frame is held. Their extractor had spaces for 3 frames at a time to be spun. They used a drill bit to spin the honey so it is forced out of the comb and drips down the inside of the extractor. Once the spinning is done on the one side you take them out, flip them, and then spin them on the other side. The honey fills at the bottom of the extractor and then there is a valve at the bottom that is opened to let the honey flow out into the bucket below. They had a mesh strainer over the bucket to help filter out any left over wax that stayed behind. Once the buckets were filled with honey they were bottled and packaged.
My favorite job was uncapping the frames with the hot knife. It was fun to melt the wax and reveal the honey underneath. I eventually got into a groove and technique where I removed the wax in a couple big chunks. I was complimented on my skills and I only stopped when my wrist and shoulder started to hurt. I also got to be in charge of the drill that spins the honey in the extractor. I had way too much fun using the drill and trying to keep it under control so that the honey didn’t go flying everywhere. That would’ve been a major party foul. I’m pretty sure her mom would have killed me based on the look she gave someone when they spilled some honey earlier that day.
About half way though the day we stopped to have lunch. I didn’t realize I was starving until I started eating. It was nice to sit outside with her family and catch up with everyone. They are all so kind and have a quick sense of humor. They all know about my horse Joe and my riding so they were asking me questions about that and my family.
After all the honey was spun and they were filling jars I took a walk outside with her dad and he showed me their bee set-up. I learned about the various parts and asked if I could go into the hive one day to see everything up close. Don’t worry I’ll make sure to wear the protective suit and I am not allergic to bees. After that I went inside and watched them bottle the honey for a little while. I started to get tired and decided it was probably a good time to head out. Her mom gave me a huge jar of honey as a thank you for helping. I thanked them for letting me be a part of the process and we all joked that I was a good replacement for their daughter since she couldn’t be there.
If I hadn’t met my friend almost 4 years ago through Ulman I would have never been part of this process or met her family. She and I met the summer after she completed the 4K for cancer bike ride across the county. A mutual friend introduced us right before she was set to start working for Ulman. We couldn’t believe that we were from the same area and grew up within close proximity to each other. We played soccer against each other when I played travel but we went to different schools. She was the one who got me to go on Key to Keys both years. The first year on the trip, I was having a really hard time and she was there for me. She listened to me when I cried and laughed with me to the point where we couldn’t breathe. No matter what, she has been there for me. She has been an integral part of getting both my family and me involved with Ulman. I know she’ll be the first person I call when we egg that car. She has allowed me to become part of her family and is always there supporting me. I know that, as she ends her chapter at Ulman there is another one just waiting to be written with her new adventures that lay ahead of her. Or at least that’s what I keep telling her.
I had a blast helping with the honey harvest. It was more fun than I ever bargained for. It was nice to be surrounded by her family who all knew my situation but treated me like I was one of their own. I was so comfortable and at ease that I was able to really enjoy being there and part of the process. Between her grandma helping me sneak tastes of honey and her mom getting me to laugh a lot it was nice to be able to do something normal. My favorite was when her dad said that he was expecting to see me with no hair. I told him that it will probably start falling out soon but good thing that wasn’t today because I didn’t think they would want my hair in the honey. Who knows maybe I’ll start up beekeeping this spring but either way I have a nice supply of honey to enjoy for now.
Walking back onto a hospital floor is never easy. It is especially hard when it’s going back for inpatient chemo. I wasn’t happy about it. I was angry, nervous, scared, and frustrated. I didn’t want to be back here. I wanted to be home with my dogs or at the barn with Joe. I would rather be anywhere other then trapped on a chemo floor for a couple days. That was how I first felt when I was told that I would have to go back to inpatient chemo and be in the hospital 3-5 days. Who would be happy about that?
I strategically bought myself some time before I had to start inpatient chemo. I had Marshall and Sterling finals to attend and I negotiated with my doctor to start chemo after finals and seeing my doctor up in Boston. If I had to go back on hard-core chemo it had to be on my time and with my schedule. I have built a life around the idea that cancer is just a part of my life and will be managed like a chronic illness. I refuse to let it dictate how I live my life.
As most of you know my sister is notorious for sending me crazy things while I am in the hospital for chemo. She is best known for the cardboard cutouts. This round of chemo I asked her that to transform the space instead of sending a cardboard cutout; to make it not look like a hospital room and instead make me think I was somewhere else. Needless to say she ran with it and got very excited for this challenge.
The day of chemo arrived and we drove to clinic to get my port accessed. After getting my labs I was informed that a bed was not available on the floor yet. Instead of sitting in clinic and waiting, my mom and I decided to drive around. Of course the one day we actually had time to go to Knoebels, it was closed. Plus I’m pretty sure they wouldn’t let me ride the Flume or Twister with an accessed port. We wandered around Wal-Mart and I looked through all of The Pioneer Woman collection they had in their store. We got lunch and then got the call that a bed finally was available.
When I started to get settled in the room my mom brought out a box and said that is was from my sister. When I opened the box it revealed decorations to transform the space to look like a Hawaiian Luau. We decided we would start decorating while I was waiting for them to mix my chemo.
When you are admitted to the floor you are asked a series of questions. This time I was told they have a new policy about asking questions for suicide prevention. I was asked, “Do you ever wish that you could not wake up?” I responded with, “no”. Then my nurse said, “Now don’t laugh, but when is that last time you went to the bathroom?” I instantly burst out laughing. We went from do you want to never wake up to when’s the last time you took a good BM.
After I talked with the pharmacist and signed my paperwork we decided to decorate my room. I put on a playlist with the Moana and Lilo and Stitch soundtracks and helped my mom decorate the room. We put up the decorations throughout my room and transformed the space. Clearly all those hours of watching HGTV are finally starting to pay off. I got my mix of premeds and chemo and fell asleep. I specifically told them that I didn’t mind sleeping through my chemo. I would much rather sleep through it then be awake and miserable.
I was in the hospital for a little over 3 days. My first full day I mostly slept. I even slept through a visit with very good family friend. She came to hang out for the afternoon. I also tried to take several walks. If I didn’t walk they threatened to give me a blood thinner shot so I obviously chose the walk option. My orthopedic surgeon came to visit and I got to catch up with him. I absolutely love seeing him and his nurses. They are the sweetest people. I got to show him a picture of Joe and me showing at finals. He was very excited. I’ll never forget the time he told me that I could ride when everyone else was against it. He always said that if I needed to ride for my well being then I should ride. The only stipulation was unless my knee was hurting then obviously don't ride.
The next day was filled with me sleeping in the morning until family friends came to visit. They brought me my own stuffed animal version of their dog that I love and a puppy version of him that I could snuggle. The dog tag on the one dog read, “Don’t mess with my Olivia.” They also brought me dog-shaped balloons. One of them was the type of balloon that you could walk with and it looked like you were walking a dog. I immediately took him for a walk with my friend and walked to the nurse’s station to show my nurses. I asked one of the nurses what I should name him and she said, “Todd.” The name was so random that it stuck.
I got sick only one time while I was in the hospital. It was on the morning I was scheduled to go home. I was brushing my teeth and I must’ve hit my gag reflex the wrong way and next thing I knew I was running for my bed to grab a bag. It takes skill to be able to sprint with an IV pole. Within seconds my nurse’s aide was by my side with a cold washcloth and ready to give me a new bag. What was even crazier was that I hadn’t even buzzed for a nurse yet. She has like a sixth sense when it comes to this kind of stuff. Plus when I was sick she yelled to me, “ well that’s one way to greet me in the morning,” which made me laugh. I got to go home that day and slept for the rest of the day.
Since getting out of the hospital I have just been laying low and recuperating. The major side effects I experience are being tired and nauseated. I am waiting for the day that my hair falls out. I have been out to visit Joe and hope to get on soon when I am feeling up to it. If I’ve learned anything over the past couple years it is that we cannot change the cards we are dealt but we can change how we play the game.
If you’ve seen me the past several months you probably noticed, and said, that I look and must feel good. You’re right about the looking good, that never changes. The past couple weeks I have been feeling good because I have been off treatment since July. However, I am back on inpatient chemo.
Back in July I had my usual CT scan and it revealed that my tumors were growing enough that we needed to change it up. My doctor asked if I would be willing to do a needle biopsy of one of the tumors, just to see what came back and if there were any trials available. At first I was hesitant because I would be leaving for vacation the following weekend and I was worried that I wouldn’t be able to do some of the activities we had planned. However, once they explained the procedure to me I said, “oh that’s it, yea I’ll do it.”
By Friday of that week I was back in the hospital getting ready for my needle biopsy. I was in interventional radiology with the usual suspects. The techs that do my CT came over and said hello and asked why I was back so soon. I responded with “yea thanks for the heads up on my CT results, you know why I’m here.” We both laughed and I knew I would see him again later during the biopsy. They use a CT scan to help show which tumor they will take a sample from. Plus I would prefer not to be stabbed randomly until they strike gold with my tumor.
I don’t remember a lot from the biopsy other then the beginning when they placed a graph on my skin while I was in the machine to pinpoint where my tumor exactly was to take samples. My nurses were super nice and held my hand when they numbed the area for the needle. I just remember sleeping and then next thing I knew I was back in recovery with my mom. After waking up they sent me home. Unfortunately on the way home I started feeling sick. Thanks to the road closure by my house we had to go the long way home. By the time we reached my driveway I couldn’t wait any longer and next thing I knew I was out of the car in the field on my driveway puking. I strategically picked an area I knew the dogs didn’t go to. I then yelled to my mom, “looks like thirsty Thursday got the best of me.”
I recovered at home over the weekend and then by Tuesday I was back riding Joe. Later that week I left on my trip out west with my mom, sister, and her husband. When I got back from the trip I met with my oncologist to talk about my biopsy results and see what would be next for treatment. He asked if I would be willing to go to Boston for another opinion and as you can imagine I practically blurted yes. I had a horse show coming up the next week and knew to schedule it after we got back. While in Boston I had a good appointment and was told about different options and left with a new chemo road map of what to do next. We went over to Newport for the night and saw my friends.
When I got home we determined that I would do two rounds of inpatient chemo that would last 3-5 days and then get scanned to see what it does. I have already done this type of chemo. Last time I had this specific chemo was in the Fall of 2013. I will be loosing my hair again so don’t be surprised if one day you see me with hair and the next I look like Natalie Portman in “V for Vendetta”.
In the meantime I’ve been spending the majority of time with Joe and organizing my house. Some kids do back to school shopping, I did back to inpatient chemo shopping with my sister. We went to one of my favorite athletic wear stores and I got some comfy clothes to add to my wardrobe to wear in the hospital or at home. I was waiting for the sales people to ask me what sport I was playing but thank God they didn’t. I would’ve said “I’m training for chemotherapy to kill the tumors in my lungs”. I reorganized a bunch of stuff at my house and generally just straightened up stuff I couldn’t stand anymore. In other words I kept myself busy.
I recently took Joe on a ride up in the fields near my barn and he was super excited. He practically trotted up the one field just to get to the grass he wanted. I mean I would run too if there was food at the top of a hill. It was such a beautiful day and I was happy to trail ride with Joe. He loves getting outside as much as I do. It is a good way to recharge the soul and put everything into perspective. It gets you away from reality for a little. There’s nothing I love more that the sound of thundering hooves on the ground.
Going back into inpatient chemo sucks. I have to be in the hospital for a couple days and will have to worry about my counts again. However, I still have options out there and there is a prospect of a trial back in Boston. Hopefully after a couple recovery days I will be able to ride Joe and get back into our regular routine. For right now we are just riding the wave and seeing where it takes us. Hair or no hair, I will be the same person with the same sarcastic comments trying to make you laugh. Just remember that life isn’t always easy but it is how we handle these situations that makes us into the person we were meant to be. Or when all else fails eat a pint of ice cream to feel better.