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.
Some of my favorite reactions are from children who are all under the age of seven. When I lost all my hair and went to visit one of my younger friends, she took one look at me and said, “I love your new hair cut!” After several more visits, she told me how shiny my head looked. When my hair came back curly, she then told me how it looked like her violin teacher’s hair. Another reaction I got was from a little boy recently at a wedding. I was sitting at my table talking with him and all of a sudden he pointed to my chest and proclaimed, “Your soul is cancer.” Everyone at the table just stopped and starred at me and I said, “You’re absolutely right - my soul does have cancer.” It was his way of letting me know that he knew what’s up.
When I was in physical therapy after my knee surgery and throughout radiation, I got some of the best reactions from other patients. I usually wore shorts at each visit so everyone could clearly see my scar. One time as I was checking in someone saw my scar and said, “That’s one impressive scar. What happened to you?” I nicely told them I just had a cancerous tumor removed from behind my knee and they just stared at the floor. Another person asked me if I had a knee replacement or if I tore my ACL. I don’t know a lot about knee surgeries, but I am pretty sure they work on your knee in the front and not the back.
Recently I was standing in the receiving line at my grandmother’s viewing when a woman started poking around asking questions about my life. She first started with what is your name then asked where I lived. I nicely introduced myself then explained that I was currently living at home. Then she looked at me and asked the dreaded question, “What exactly do you do? Do you have a job?” It was one of the few times that I wanted to say, “Are you seriously asking me this question right now?” I was starting to get use to the hello, sorry about your loss, and then the head nod with a frown. This threw me off so much that I just stared at her. It was one of the few times in my life when I didn’t know what to say back. I nicely said I had some health issues and quickly passed her along to my sister. Looking back, I should have said, “I’m fighting cancer full time and if you wouldn’t mind would you please move along because your sucking precious oxygen out of the air I need for my sarcoma filled lungs” then I would have flashed a smile. Thank God I was dumbfounded.
The morning of my lung biopsy this past May was yet another opportunity to make everyone around me feel awkward. When they called me back to the pre-surgery area I had already gone to the bathroom. Apparently you must wait until you get back there to go. In my situation when I have to go to the bathroom I have to go immediately. There was no way was I holding it in until I was instructed. After being told I should have waited, the woman commented on my hair. She was saying how curly and beautiful it looked. Then, she asked me how I got it that way. I told her that it was chemically engineered from chemotherapy. What followed was pure silence until another nurse came in to start my IV. I guess that wasn’t the answer she was looking for.
There are a couple other ones like when I was told, “At least no one else has it.” It’s not something you can catch like a cold, people. Another was when everyone kept telling my mom, “She’s young and she’ll get over it.” Once again this isn’t one of those things you can just get over. My other personal favorite is when I would tell people and they would say, “Well you know my (insert name here) had cancer and is doing great now.” Another popular one was when people would tell me about their sister’s friend’s cousin who was twice removed and is now part of the family stories. It was as if by telling them about my cancer story they had to come up with six degrees of separation to link my story to someone they know. I don’t mind hearing about other people’s cancer stories, but it’s when you get into the far fetched ones that it gets ridiculous.
There were certain people that I told who would cry - which is perfectly normal. I told a friend over the phone the day I found out and she started crying. She forgot to mention that she was driving when I was talking to her. There is nothing worse than hearing your friend has cancer while driving somewhere. Whenever I call her now, I always ask if she is driving or not. There was someone who started hysterically crying to the point where they couldn’t move. I quickly started comforting her and then thought, “Wait, hold on, did you just tell me bad news or are those still your cancer tears?” I quickly learned that if a person cried when you told them your cancer news to just hug them or shrug your shoulders.
I don’t generally sugar coat anything so when I started telling people my news they were more shocked at how I was telling it to them. I shared my news like I would share anything else. I mean saying I have cancer is a lot more shocking then telling people I was headed to the barn to see my horse Joe. I have no plans on changing how I tell information. It just is what it is.
Everyone is fascinated with your hair once you have cancer. Usually after you tell someone that you have, “the cancer” the first question they ask is about your hair. They always ask if you will lose your hair or if it will thin out. That seems to be the question I get on a regular basis. It’s as if everyone is waiting for my hair to fall out because of my new oral chemo medication I take on a daily basis.
I lost all my hair after my first round of inpatient chemo. It was about 10 days after when I noticed a huge chunk had fallen out after I scratched my head. My major concern was where do I put my hair. I obviously placed it in the trash but I wasn’t sure what to do if I was in a public place. That question was quickly answered when later that afternoon I had an appointment with a nutritionist at the cancer center. After entering the exam room my head was really itchy. Not thinking I quickly itched my scalp and clumps started flying everywhere. They were on the ground and in my hand. Well this is awkward. This really wasn’t a barbershop so it would be really weird if the nutritionist walked in and saw hair everywhere. I quickly grabbed the chunks and threw them in the trash.
After my nutrition appointment we went to get my head shaved by the woman who cuts my hair. Luckily I already had a short hair cut so I didn’t have a lot of hair to lose. After shaving my head it felt like I had instant air conditioning. It definitely felt weird but I knew I would get use to it eventually. I no longer would have to worry about what to do with my chunks of hair that fell out. I wasn’t upset about losing my hair because I knew it was just part of the process. Plus everyone kept saying how I had a nicely shaped head. Then again most people had no idea what to say to me so that seemed to be the number one comment I would get. “You’re so lucky that you have a nice shaped head” was the top comment I would get. Then again it wasn’t like they were going to say, “it’s a shame your head is a weird shape and now you’re bald.”
In January my hair started growing back and I immediately knew it was going to be curly. Since I lost it in September everyone asked me what I was going to do if it came in curly. My standard answer was that I was going to get it chemically straightened. Well if you have seen me recently you obviously know that never happened. I knew it was going to be curly because whenever it got wet or sweaty it would immediately turn into tiny curls. I looked like I had just had a perm. I let it grow and am still waiting to see what it will do next.
My most recent discovery with my hair is that it is slowly starting to turn white. One of the side effects of my oral chemo I take on a daily basis is having white or silver colored hair. I didn’t believe it until I was brushing my hair and noticed that at the roots it was starting to change into a white color. My hair is a dark brown so when I took a closer look I knew right away the days of white hair have arrived. Little did I know that I would experience it in my 20’s rather than later in life. When I saw my orthopedic surgeon in July and told him I might have white hair the next time I see him he was very excited. He was one of the few people that thought it was awesome rather than asking me if I will dye it.
It’s not every day that you see someone in there 20’s with white hair. It will probably be awhile until my hair turns completely white. Until then I will probably start to look like a skunk. Who knows I may just cut my hair really short and start fresh again. I guess we all will just have to wait and see what happens.
I was sitting in the changing room at radiation waiting to get the simulation of my leg. This was right before I was about to begin my 33 days of radiation. I had just changed into yet another fabulous hospital gown and had just sat in the little waiting area. I was sitting, watching the TV with a woman when another lady waltzed in and proceeded to sit near us.
The two other ladies began talking about their lives and why they were there. I just sat there watching the TV until the one lady mentioned that she was back for more radiation. Then she went into this long rant in which she proclaimed, “I refused the chemotherapy. That rat poison they put in your veins will kill you faster than the cancer itself.”
At this point in my treatment I had just had surgery after going through 4 rounds of inpatient chemo. My hair was just starting to grow back. If you took one look at me you would realize that I had, “not refused the chemotherapy.” I had done everything my doctors had told me to do, and there was no way I was refusing anything they were telling me to do. Well, except that one time my oncologist suggested that I put a huge bell on my walker for decoration. Between my bald head and the walker, I was already getting enough sympathetic looks from strangers at the hospital. Especially when I walked by the large lab at the hospital where everyone sits outside waiting for his or her magic number to be called. If only I was wearing a top hat and singing “Putting on the Ritz” then it would have been more bizarre.
That woman in the waiting room kept talking about how chemo was poison and how horrible it was for our bodies. I swear if we had a little soapbox for her to stand on she would have been handing flyers to everyone as they walked by proclaiming her message. I just sat there looking out the doorway hoping that one of the ladies would come and get me. Right before I went to get my simulation the other lady who wasn’t on a rant took one look at me and said, “Well you obviously didn’t refuse the chemo.” I wanted to turn to both of them and say, “No shit Sherlock and if you wouldn’t mind that rat poison you were ranting about helped to kill 65% of the tumor in my leg before it was removed.” Thankfully, I just nodded and continued to pretend to watch the TV.
Thank God someone finally came and got me to do my simulation. I spent the next half hour lying on my side as they created the mold for my leg and placed various stickers all over my leg. There is nothing more exciting than being told not to move while lying on your side. The beanbag mold they were making around my leg didn’t help with the whole not moving part. I would later find out that if you even move a hair while lying on the table before getting radiated they know. It wasn’t until after I got my three tiny tattoos on the bottom of my leg that I was able to go. I never saw those two ladies again when I went for my radiation treatments.
It was in October last year that I was sitting minding my own business watching the TV in the waiting room when I heard the voice. It was a woman from a cancer related organization walking around introducing herself to other cancer patients. She was eager to talk with everyone and hear their compelling cancer battle stories. She was walking around like she was at a cocktail party, chatting with people here and there. If only she had a drink in one hand and some type of appetizer in the other, would I have thought it was appropriate?
As she snaked her way through the one waiting room, out of the corner of my eye, I could see her looking towards me. I purposely positioned myself lower and lower in the chair hoping that she wouldn’t notice me. As she moved in closer and closer towards where I was sitting I knew I was screwed. I quickly pulled out my phone and pretended to be writing an email.
Within seconds I heard her say to my section, “What would we do today without cell phones?” I kept staring at my phone trying not to look up and make a face. I really wish I had my, “yet despite the look on my face you are still talking” t-shirt a friend gave me. It would have been perfect in this situation. She was two seats away from me and getting closer and closer. I watched her as she talked with the other patients. She made the classic facial expressions and gestures you give to someone when you hear their stories. I wish I could have interrupted the story by pulling out my phone and playing, “Chariots of Fire” when the person talked about how they overcame this disease.
Now at this point in my treatment I was in between rounds 3 and 4 of chemo. I looked white as a ghost and knew I would need a blood transfusion soon. The last thing I wanted to do was talk with this overly excited cancer story lady. I don’t mind sharing my story with people, but I absolutely hate it when I get the look. You all know what I am talking about: that look people give you like, “oh poor you. I don’t understand why this happened to you.” Ladies and gentlemen just stop with the damn look. I can spot it a mile away when I get that look and she was giving that look to everyone she was talking to.
Thankfully, the woman she was talking to before me was taking her sweet time talking to her. I looked up at the clock and realized I would have to go upstairs for my appointment. I got up from my seat with my mom and started walking away. As we were walking towards the elevator she called to us, “it was so nice meeting you!” and gave a huge smile/wave. I just shook my head. Not only did she not reach me in time to talk but I also hadn’t introduced myself to her. Awkward is putting it mildly.
I would have gladly shared my story with that woman if we were in a different setting. A cancer center waiting room really isn’t the place to hunt one of the few young adult patients. Just because I have a young face and was bald doesn’t mean I am the great cover story for your next edition of cancer weekly. Now you are probably thinking don’t ever ask her to share her story with the world. If you haven’t already figured this out it’s called the sarcastic sarcoma and by the way I’m free for any speaking engagements in the near future.
It was August 2, 2013 that I received my initial diagnosis that I had a synovial sarcoma behind my knee. I was sitting in an exam room with my orthopedic surgeon as he explained what was about to happen. Prior to this meeting he arranged for me to meet my oncologist and radiologist. As one doctor would walk out the door another one would walk in. It was like I was on a new game show called “Who’s your Doctor.” Behind door number one my oncologist; door number two my radiologist; and finally door number three my orthopedic surgeon.
It was my first time meeting all of them and I didn’t really know what to say or ask them. Little did they know that a couple months down the road I would be joking and laughing with them at appointments. I spent over an hour listening to each of them come in one at a time to talk about chemo, ports, radiation, surgery, and everything else. I surprisingly didn’t have that deer in the headlights look because I was familiar with all of this information thanks to a fellow sarcoma friend.
After they all were done talking, I started to get up to leave when the mystery person behind door number 4 walked into the room. It was a psychologist dressed in her lab coat. I took one look at her and thought you have got to be kidding me. I was asked if I would like to share my thoughts and feelings about this “horrible news”. Then she gave me the “concerned” look and pulled out a piece of paper and explained she would keep me for another 45 minutes. Quickly jumping to my feet I said I wasn’t interested in talking about my feelings today and would like to leave. I made an appointment to see her at another time and canceled it. My oncologist still talks about the look on my face when she walked into the room.
The best reaction from a person I ever got goes to my Granny. When we called her on the way home to tell her the new she just said, “shit” and nothing else. To this day I can’t stop laughing because everyone takes bad news different. There are the people who think the environment or something processed in our diets caused it. There are the people who start sobbing and you think, wait why and I comforting you about my bad news? There was someone who thought I caught it from a friend who also has a sarcoma. There are some that after hearing your news awkwardly stare at the floor or just stare at you for a long time. If I get that reaction I usually just pretend to tap a pretend microphone and say, “Is this thing on?” These are just some of the many reactions I have gotten from people.
After that initial diagnosis appointment, I thought those doctors had no idea what they were in for. I planned not to be the average cancer patient and decided that I needed to make my doctors laugh as much as possible. These individuals deal with giving bad news to patients on a regular basis and needed someone who wouldn’t always be cranky towards them. I didn’t plan to constantly walk around the cancer center with a huge smile planted on my face and giving a pageant wave to everyone who walked by. I save that for when I am riding the back of a golf cart at camp. That wasn’t me at all. I instead stayed positive about everything by cracking jokes with a straight face and making people laugh. I have learned over the years that laughter is the best medicine and if that doesn’t work there is always morphine.