A friend and I came up with this title after attending one of those cancer themed events. It was one of those events that certain organizations put on to make cancer patients feel better about how they look. It was free for cancer patients and their caregivers. I saw the ad for one online and figured why not try it. Anything with the word free in front of it had me sold. I thankfully asked a friend to go along with me.
The night of the event was one week after I had chemo. I wasn’t feeling 100% but decided to go. At that point I had hit my daily limit for TV, and I was meeting my friend there. We decided to meet outside and walk in together. As soon as we walked through the door we heard nothing but silence. We walked into a conference room area to find a group of women quietly sitting at the table staring at each other. No one was talking or saying anything. There is nothing I love more than awkward silence. I secretly wanted to drop a book on the table to see what everyone would do. We both were given our bag of “goodies” and we proceeded to sit down next to each other.
We sat there for another 10 minutes before the person in charge of this event said, “Are we ready?” I wanted to say, “Can we wait another 20 minutes. I was really enjoying the ambiance of the awkward silence and depressing stares.” I was secretly hoping someone would run in the room with streamers and confetti guns. Of course, that didn’t happen, and we then went through our kits and applied any make-up that was provided. Not only was I missing half of the stuff inside, but I also had no idea what the hell I was supposed to do with any of it. This girl usually goes for the “natural look” meaning I rarely wear heavy make-up. At that point, I was starting to loose my eye lashes and the last thing on my mind was buying that product to add volume to my ever dwindling lashes.
The awkward silence continued with the occasional direction of what to do next. However, it seemed as we got further and further in the steps I had less and less items. I figured I would check out the snack table thinking it would be a safe idea. Wrong. Who wouldn’t want a shrink-wrapped snack that looked like someone had stepped on it or as if it had been in the bottom of someone’s bag? Yum. After not being able to eat for a week, that was the last thing I wanted to waste my appetite on. Thankfully, I packed my own snacks, but after seeing that snack table I wasn’t hungry.
By the end of the event, the person in charge asked if anyone had any comments or questions for the group. I had several comments I wanted to share with the group, but I figured my brutal honesty probably wouldn’t be the best thing right now. I was already at a cancer event and the last thing they wanted to hear were my comments. However, someone did raise their hand and shared a story with the group about shopping for wigs. I learned where I could buy the best wigs and what was the best thing to put on your scalp before your wig. With my hot flashes at the time, there was no way in hell I was even considering wearing a wig. First, you have to wear some type of pantyhose on your head and then put the wig on. And second, everyone already knew I was bald. I think it would be pretty weird if I were bald one day and the next I showed up with a full head of hair. I believe in miracles but getting a full head of hair wasn’t really high on my list.
I was very happy that I had a friend go with me. She and I were laughing afterward about the bizarre event we had just attended. We came up with the name "look the same feel worse" as we were walking outside. It was one of those times in your life where you think this is definitely something we will talk about for a long time.
A year ago I was on my way to an after hours clinic to get my knee examined. I had discovered a small mass growing behind it that was wedged right in my joint. As I look back, I can’t believe its been a year since I found the little shit.
It all began with a tumor that decided to settle behind my right knee. Based on the impressive scar I now have behind my knee, the tumor was the size of a tennis ball. It started growing in my soft tissue without me ever realizing. I had just graduated from college and was preparing for my new life teaching in a second grade classroom in Maryland. On the day I found the tumor, I had come home from setting up the last bits of my classroom and had a riding lesson for an upcoming horse show that weekend.
During my lesson I decided to wear my tall show boots that settle right into my knee joint. In the middle of my lesson, I had pain behind my right knee; and figured it was just the boot digging into my leg. I was having a blast jumping with Austin, the horse I had leased for the summer. We were jumping an impressive 18 inch cross rails - which is pretty much the smallest height you can jump.
As I was walking Austin back to the cross ties and taking off the various tack items, the pain came back. I decided to unzip the top part of my boot to see if that would help and that's when I felt the bump. I quickly cleaned off Austin, put away his tack, and went home. I changed into shorts and asked my mom to look at it. She immediately had me call the doctor and we went to the after hours clinic.
After a thrilling ride in a wheel chair down a long hallway at the clinic, I had an ultra sound. I could tell the woman was more than excited to have a patient on a Friday afternoon based on how hard she pressed my tumor. I would get the occasional, “I have to push down like this, sorry”. She was lucky at the time I didn’t try to kick her, saying it was a side effect of the tumor. I was told they weren’t sure what it was and not to worry since I would just need some further testing. They also told me I wasn’t allowed to show that weekend and I was pissed. If only they could have given me the news with some flashing lights or a nice line dancing number would I have taken it more seriously.
Fast-forward to Monday when I had my MRI and found out that my tumor was solid and I would have to meet with yet another doctor. By Wednesday I was in my orthopedic surgeon’s office and signed my life away to have a biopsy that afternoon. I was quickly ushered into a room wearing a fabulous hospital gown and robe. Both my surgeon and a resident came in moments later decked out in their surgery ware ready to go. Within minutes my tumor was numbed and then a small incision was made while they collected samples of it.
I was eventually bandaged up and told that I would get the results on Friday. The only information I was given was that it was something that was definitely growing back there. I walked out of the hospital with my bandage behind my knee and my skin was a nice blue/orange color all around it.
We stopped at a gas station on the way to get something quick to eat and drink on the road. It wasn’t until I got to the counter to pay that the lady behind the register obnoxiously asked, “What’s up with the bandage behind your knee? Is it some kind of tattoo?” Looking back I probably should have just said yes, but instead I said, “Nope I just had a biopsy of a tumor behind my knee to find out if I have cancer” with a straight face. Cue the beginning of the jaw drop and awkwardly looking at the floor. Little did I know that this would become one of the signature looks I get when I speak about my sarcomas with a straight face and a dry sense of humor.
You’re probably wondering what these three things have in common; thinking there is some random degree of separation that connects all of them. Maybe Abe Lincoln wore a horse head mask while riding a cow during the Civil War? The only thing these three items have in common is that they were gifts my sister sent me during round 2, 3, and 4 of chemo in the hospital.
Round 2 was just after I had lost all of my, already short, hair. I was in my hospital room watching TV when one of my nurses walked in with a small box. I had no idea what was inside or what to expect. It was during this round that I met the doctor I would eventually call the bowtie doctor. He wears the best bowties whenever I see him. Apparently one of my levels for some random element was low so I had to get yet another IV spot for this element I was lacking. I was already pissed that I not only had the IV spider web coming out of the port in my chest but now also had a lovely one in my left forearm. I opened the box to reveal a latex horse head mask.
My mom quickly put it on before putting it on the extra IV located at the back of my hospital bed. Later that night when I was fast asleep the bow tie doctor came to check on me. When he saw I was sleeping he said he would come back when I was awake. As he was walking out the door he quickly looked at the horse head above my bed and asked my mom, “Are you trying to send me a message?” On the day I left while we were packing up and we decided to put the horse head on my bed under a blanket. When the doctor walked in the room he started laughing. He currently has one in his office. I anonymously sent it to him a couple months ago so he could have one of his own.
Abe Lincoln waltzed into my room as a cardboard cut out during round 3 of chemo. He stood next to my bed and usually scared anyone who walked in my room. Another doctor who was on call that week and shared my love of horses thought he was hysterical. I guess Abe Lincoln isn’t usually in a chemo patient’s room. I still have no idea why Abe Lincoln appeared in my room. Looking back we should have hid him behind a curtain right near where you walk into my room. I decided against this, fearing that my nurses while carrying chemo would scream and then spill my chemo everywhere. You have to wear specific things to handle that stuff.
Last and not least was the cardboard cut out of the cow that was delivered during my 4th round. We strategically placed it in my room so anyone who walked by could see it. I was staying in a room at the end of a hallway and we could constantly hear people doing a two-step to walk through the doorway at the end of the hallway. When I stay two-step I mean they stepped one forward then one back to look then went on their way. We also got a lot of double takes from people passing by. When my orthopedic surgeon came to visit he did a double take of the cow and just shrugged. At this point he understood my humor.
This week as I was helping my mom clean out a room that looked like the next set of hoarders, I came across the hot dog costume. Back in October around Halloween I was in the hospital for my fourth round of chemo. By this point my sister was infamous for sending me the most random things while I was in the hospital. Whenever a box would come a group of chemo nurses would bring it to me eager to see what quirky thing she had sent me this time. I opened the box and revealed a hot dog costume.
Its not every day that you get sent a hot dog costume while you’re in the hospital. I promptly looked at it and placed it in on the counter by my bed. At the time a family friend was staying with me for the day while my mom was at a funeral. She was so excited about the costume and kept saying we should have a Halloween parade tomorrow featuring the costume. At that point I was on day 3 of chemo and falling asleep at the drop of a hat. My costume that year was going to be a ghost since I was currently that shade of white. We decided to look at shoes online and I fell fast asleep.
When I woke up it was two hours later and my family friend was standing in the window waving frantically at something. Then it hit me, she was currently wearing the hot dog costume while waving at someone out the window. I quickly thought my drugs were really making me see things but then remembered the costume. I couldn’t stop laughing. She told me she could see my mom out the window and was trying to get her attention. Mind you I was on the 8th floor of a large hospital. Then she proceeded to run out of the room while wearing the costume saying she would greet my mom at the elevator. I don’t think it’s an every day occurrence to see someone running down the chemo floor wearing a hot dog costume screaming, “ask me about my wiener!”
If you don’t know this quote, it’s from a specific movie that my family quotes all the time. She happily greeted my mother yelling this catch phrase and I could hear them laughing hysterically as they walked down the hallway to my room. She wore that costume and greeted everyone who entered my room in it. I think my chemo nurses laughed just as much as we did. As for the parade it never happened because I was too tired and my night nurse didn’t want to wear the hot dog costume.
I had never pictured myself as the type to wear a leather fringe jacket. The only time I had ever seen one was in one of those biker films or at a music festival. But here I was on Sunday morning wearing a leather fringe jacket and leather chaps over my jeans about to get on the back of a motorcycle for the first time. As I put my helmet on my banana covered curls I started laughing.
Back in early May after I had my lung biopsy, a friend from the cancer center asked if I wanted to go on a motorcycle ride with him and a couple other people that worked there. I reluctantly said yes, secretly hoping it would rain on the actual day of our adventure. As the day drew closer, I still couldn’t believe what I was about to do.
I had just spent the week at camp and was already exhausted from arts and crafts with all ages. Who would have thought making dream catchers, fish handprints, and coloring would make me tired at the end of the day. By the end of the week, everyone was asking what my plans were after camp for the weekend. I had one friend who was working, another going on a mini golf expedition, and another going home to sleep. When I said I’d be going on a motorcycle ride with my friends from the cancer center everyone just stared at me and I could tell they didn’t know what to say. That’s my favorite - when I say something and people don’t know if I am kidding or telling the truth.
I met my friends from the cancer center last August right after I learned that I would start chemo the following week and would have to get a shot that was, "painful". I was not a happy camper and wasn't looking forward to this infamous shot. I was happily greeted by a sarcastic man at the check in desk who appreciated my humor and shot it right back at me. Then a nurse came out and had me follow him back to a room to get the, "painful" shot. As soon as I said I hated when people counted down before shots he said ok and preceded to yell, “46-42-43 hut hut hike” before sticking the extra large needle in the muscle in my arm. It must have worked because it distracted me and the shot didn’t hurt as bad as I thought it would. I would never have thought that I'd end up on motorcycle ride with them almost a year later.
There were four of us total on three bikes. I obviously was riding with someone else. There was no way I was going to try to figure out how to drive a bike. I am lucky if I can get my music to load on my phone. Once we were on the open road, I was surprised how much I like it. I never understood why my family and friends loved riding until I put myself in their shoes. We first stopped for breakfast and then after we began our 3 hour loop. We would occasionally stop here and there to stretch our legs and move around.
The scenery was beautiful. I always love going on road trips on back road, enjoying the view out my window while listening to music. However, this time was different because I was decked out in my leather ensemble and helmet with the wind blowing my fringe. I also can’t forget to mention my sneakers that really pulled the whole outfit together. Once in a while one of the members of our group would yell, “wild hogs!” or try and come up with a name for our biker gang.
The other nice thing about the day was that I was never afraid about being on the bike. I knew I would be safe based on the gear and the fact that the people have been riding for a long time. Plus, I trust these people with my life on a regular basis - so I knew they had my back.
We ended up at the end of the trip back at my driver’s house and had a nice cookout. I loved listening to them tell stories about everything and what good movies or TV shows to watch. I always am looking for new shows since I spend the majority of my time when I am home in my “office”. Everyone else calls it the TV room, but people are always barging in my office without warning. I am considering getting a sign that says: “Do not disturb.” Hello, this is a place of hard work that includes watching TV or working on my computer.
Welcome to The Sarcastic Sarcoma. An average girl with average problems and some nice sarcomas that have decided to settle in my lungs. I have decided that since its round 2 of treatment it’s time to document what the heck happens between doctors appointments, scans, blood tests, transfusions, and everything in between. It’s an insiders guide to the cancer world. This isn’t a blog about how sad life is or how horrible things are because I have the “C card.” It’s more a place for me to tell the stories I have collected over the past year and about the people who have been along so far for the journey. Don't worry there will be plenty of new stories along with ones from this past year.
I recently started telling stories about my past treatments/appointments to people, and I was encouraged by several people to share them with the world. From the ever-famous horse head on my IV during chemo to the random items my sister would send to me while I was in the hospital. You will quickly learn I try not to be the average cancer patient. Between my sarcastic nature and dry humor, I don’t leave any doctor office without making the doctors, nurses, techs, or anyone else laugh.
I have met a ton of people over the past year and I couldn’t be more thankful for each and every one of them. They all have become part of my very large medical family. Whenever I go for appointments, we spend the majority of the time visiting with everyone or bringing cookies. When I have to head to the hospital or clinic, I make sure to coordinate my visits so that I can see my other friends that include doctors, residents, nurses, child life specialists, and everyone in between. I can remember seeing one of my surgeons in the long hallway of the hospital and screaming his name just to say hello. Luckily I had my hair at the time so everyone wasn’t staring at me for being a bald 23 year old. Not to worry it’s just some crazy girl screaming to the surgeon who removed the original sarcoma that was behind her knee. Why just go to a hospital and see the doctor when you can visit with everyone you have met.
Since I am 23 I decided to be part of the adult oncology world. I am the baby face of adult oncology. At the cancer center I go to, I am told countless times how young I am and how they can’t believe I have cancer at such a young age. In typical fashion, I usually just say “Man good thing you don’t go to the pediatric clinic because you would be saying that to everyone there.” Since my hair grew back very curly everyone doesn’t believe that I have cancer. We come in many shapes, sizes, forms, and ages. I am the sarcastic girl with sarcomas who has decided to face life with her dry sense of humor and sarcastic nature.
This is just a small part of the long strange trip I have been on so far. Let’s hope I can remember the past, look to the future, enjoy what’s going on in front of me, and that no matter what happens in life to “Just keep swimming.”