When you are listening to a song, you don’t think about what’s going on around you. That’s what I like to do when I hear my playlist over the sound of a PET scan machine. It was during my last scan that I was listening to my new playlist called, “scan me.” Although the PET scan is a quiet machine compared to an MRI, it’s nice to be able to listen to my favorite band instead of the loud swishing noise of the machines. I try and listen to music during PET scans and the occasional MRI.
When you go for a PET scan it’s always the same procedure. The day before, you eat the PET scan diet where you can’t eat sugar, carbs, or any good foods. Instead you have to eat lots of protein and then fast the morning of your scan. It’s on these days that I try to incorporate bacon into every meal. Then you get the ever-exciting radioactive injection into the IV in your arm. After that you sit in a room and wait for the stuff to work its magic. Then they come and get you for your scan. Don’t worry they let you go to the bathroom before your scan. That was a major concern of mine during my first scan.
After being ushered into the scan room I proceeded to lie on the table. I was layered with a couple blankets and then was strapped to the table. The sound of the Velcro straps really sealed the deal and made me realize there was no way to escape. I felt like a hot dog or a mummy. It was during my second scan that I was asked if I wanted to listen to music. I eagerly said yes and listened to a radio station. It was a nice change but the only downside is you aren’t sure what song will be next. It wasn’t like I could click a button to change the song. This is yet another one of those scans where you can’t move. That’s why I came up with my playlist of music from my favorite band.
I always make sure that the same technicians from interventional radiology are there during my PET scan. Not only are they good with a needle but they also make me laugh. During my last scan one of my techs showed me pictures to help pass the time. She always makes sure to sync my phone with her speaker so I can listen to my music. They both also make sure to tell me how much time is left in the machine and make sure I am ok. I am probably one of the few patients that make them laugh during the scan with my sarcastic nature.
Over the past year I have had also had several MRI scans of my knee. During my first scan I made the mistake of just using earplugs instead of the very thick soundproof headphones. The earplugs must not have worked because after my scan I found myself shouting to everyone for the rest of the night. When I was walking out of the hospital and talking to my mom I noticed several people staring at us. It probably was because I was shouting, “THE SCAN WENT FINE AND THEY WERE GOOD WITH A NEEDLE.” I knew the next time to ask for the very thick soundproof headphones. I eventually found out that I could listen to the radio through the headphones during another knee scan. All of a sudden during the breaks in the ever-exciting banging noise I heard music. Nothing like rocking out to the radio to help pass the time. I luckily remembered that if I started singing the techs would hear my voice and probably think something was wrong.
I started getting CT scans of my chest to get a better picture of the tumors in my lungs. I don’t usually listen to music because the scan is less than ten minutes. I never knew that the machine talks to you. I was in the machine when all of a sudden I heard it say, “take a deep breath and hold”. Then I went through the machine and thankfully it told me I could breath out at the end. The only nice thing about CT scans is they are really quick. During my last chest CT I commented after the voice. At this point I already knew that I had several sarcomas in my lungs. You know things are bad when the tech comes out to usher you back to the waiting area and pats your shoulder, gives you the look, and says, “good luck with everything.” I just said, “thaaaaaannnnkkkksss” and flashed my pageant smile. At my most recent scan I had the same guy again and he said, “back again.” If I had a choice I wouldn’t be coming back for seconds.
After I have a scan everyone asks us the same damn question, “what were the results?” If you have any type of test or scan they don’t tell you the results right away. The technicians aren’t allowed to tell you anything. It’s not like you walk out the door after your scan and they hand you a piece of paper saying “cancer” or “no cancer”. That would certainly be more dramatic than those reality shows where someone gets voted off each week. Pretty sure America would always vote “no cancer” if it were up to them.
Bob Marley once sang, “One good thing about music, when it hits you, you feel no pain.” When I am having my various scans throughout the year I like to listen to music because it distracts me from what is going on around me. I don’t think about the fact that I am stuck getting another scan in yet another machine at the hospital. I know when they start my playlist or turn up the radio I can jam out. I just have to make sure I don’t dance in the machines because if you move it’s a huge no no.
There are some days that I wake up and feel utter exhaustion. The other day I woke up and knew it would be one of those days. When I got out of bed my body felt as if I was thrown off a horse. Don’t worry that really hasn’t happened. If I said I felt like a bus hit me, I may offend several people in my family. Needless to say I didn’t want to move or, let alone, get up. However, my stomach had other plans for me and I knew it was time to get up. I quickly went to my “office” in the TV room and collapsed. Apparently a flight of stairs was enough to make me tired again. I had decided I would be a couch potato.
I rested and then decided to go and see my horse. Even though I looked white as a ghost I figured he probably wouldn’t mind the day off and he would need to be groomed. I decided that I wouldn’t ride just in case I started to feel exhausted again. I would prefer to fall off my horse while we were doing something epic rather than just standing there. If you have met him you know it’s a steep fall.
I took my time grooming Joe and talked with everyone who was there. My horse was more concerned with the pile of carrots on the near by tack trunk then the people working on the roof. I kept getting an evil glare from Joe since I had yet to give him a carrot. I finally looked at him and said, “oh just deal with it.” What was even funnier is that he stopped looking at the carrots and looked forward. He clearly knew he wasn’t getting a carrot anytime soon. Don’t worry, once I was finished I gave him some treats and put him in his stall.
Afterwards I grabbed lunch to go and went home to rest for the rest of the day. I was exhausted and knew that the best thing to do was to pick out some DVDs and watch some movies. I resorted to my couch potatoness and vowed not to move for several hours. Apparently my chemo decided that I needed just a day to chill and relax by doing nothing. I had already pushed my limit by just going to the barn to groom.
What many people don’t realize with my treatment plan is that I am taking my chemo pills six out of seven days of the week. I am not on a plan where its one-week inpatient chemo and two weeks off like last time. I sometimes forget that I have to pay attention to how I am feeling rather than hit the ground running. I take chemo daily and am trying to live day to day and in the moment. I have to “deal with it” every day and just go with the flow because you never know what might happen next or how I will feel.
On Friday I felt ok in the morning and decided to ride. It wasn’t until I was finished riding and put my tack away that I noticed my stomach had other plans. By the time I got home my stomach was still really sick and I knew it was time to call the doctor and take some medicines. I spent part of my Saturday at the cancer center getting IV fluids. Since it was a weekend it wasn’t nearly as busy as it is during the week. I don’t mind the quiet especially when I am not feeling my best. I got to see and talk with a few of the nurses I hadn’t seen in awhile. I also made sure to pack a movie to watch which turned out to be a very good idea.
I think that the hardest thing for people to understand is that I look like a normal healthy person. If you didn’t know me you would have no clue what’s going on. I don’t look like the stereotypical bald cancer patient. I have a nice salt and pepper hair color. I also don’t have the same treatment plan as others. Recently I have been getting a lot of questions about my treatment plan. Every patient has a different cancer and a different treatment plan. Everyone’s illness is different. I spend my days riding my horse when I feel up to it and resting on the couch with my dogs at my feet. I usually say to my lungs and stomach daily, “keep your shit together.”
Before I started my first round of treatments in August a family friend dropped a gift at our front door. I had just come home from a long day at the hospital with appointments and was excited to see a surprise at the door. I opened the bag to reveal an orange purse filled with notebooks, pens, and other desk supplies. Orange is my favorite color and it’s rare to find a purse that color. I immediately picked up the phone and called to thank her for the gifts. In talking with her she asked about an owl she saw at the house while she was dropping off the gift. The owl was near our front door on the light on our walkway. She told me that while she was dropping off the gift the owl watched her the whole time. I told her that we had never seen an owl at our house or at our front door. I immediately knew it was her son watching over my family and hers.
The second time an owl appeared during my treatments was when I was making blankets for my chemo nurses. Whenever I went into the hospital for my four-day inpatient chemo treatments I always took my fleece knot blanket. My sister had made it for me. One side was a solid orange and the other had a horse pattern. Anytime one of my nurses would walk in the room they would always admire my blanket and comment on how soft it was. I knew at the end of my treatments I wanted to give all the nurses a gift and we thought a knot blanket would be the perfect idea. We ordered the fleece fabric online and chose a bright pattern with owls for one side and various solid colors for the other side. After ordering the fabric we counted all the nurses, aides, and anyone else who I had encountered on the chemo floor. When the number went above thirty-five I thought, “oh shit what did I get myself into.”
Since I wasn’t allowed to leave my house, because I had no immune system, I spent my days making the knot blankets. When I felt good I sat at our dining room table tying each knot for each blanket. My mom was nice enough to cut the fabric, lay it out, and cut the various ties for me to knot. Some days I would make one and other days I would make three. We had a system and it definitely help pass the time. There was only so much television I could watch. I usually listened to music, as I would knot each side while rolling around the table in my desk chair. There were several times that I almost got into an accident sliding all over our dining room. It wasn’t until we were tying the last blanket that we realized we picked an owl pattern. I originally liked it because of the bright colors. This was another time owls appeared in my life. We decided that my mom and sister would hand them out while I was in surgery.
While I was in my surgery having the tumor removed from behind my knee my mom and sister delivered the blankets to the chemo floor. What else were they going to do since they had five hours to kill. While I was in a drug-induced sleep they somehow got a family friend, who is a doctor in Danville, to help them. Apparently they were concerned about how to get all the bags of blankets to the floor. Our car was on the complete opposite side of the hospital of the chemo floor. Somehow our doctor friend stole a linen cart and they used it to deliver over thirty-five bags filled with the blankets to the nurses on BP8. I can only imagine the looks on people faces as they saw the trio pushing the cart down the long hallway at the hospital. My chemo nurses loved the blankets and still talk about them whenever I go and visit.
The third time owls appeared was when I decided to give all my radiation techs and radiation nurses owl socks on my last day of radiation. Every day I went for radiation I made sure to wear crazy socks. Since my knee was being radiated I had to wear shorts. The only problem was it was through January and part of February and it was freezing outside. Don’t worry I made the executive decision to wear pants over my shorts. I knew that my feet would be exposed and there was no way I was walking on hospital floors in bare feet. I went for thirty-three days and tried to wear a different pair each day. It was very hard to remember which ones I had already worn but I did my best. Between our hot dog and food discussions, everyone always commented on my socks. On the last day we brought everyone a thank you gift. Inside the bag was a pair of owl socks and cookies my mom made for them. Everyone in radiation was obsessed with these oatmeal white chocolate craisin cookies my mom makes. We also included a note about the reason behind the owls. I recently went to visit everyone and one of ladies in the front check in area made me cupcakes that looked like owl and they were delicious.
Owls have been a symbol of hope and inspiration for me throughout this past year. They always seemed to appear when I least would expect it. Sometimes they were in the form of a pattern or a picture on the wall. One day when I was getting my blood drawn and was really anxious, I can remember looking up at the calendar and seeing a picture of an owl. It immediately calmed me down. I didn’t pick owls because I am obsessed with a certain book where a wizard has a pet owl. I never was a fan of those books. The owl was a symbol that helped guide me through my treatments and allowed me to see through the darkness of my illness. Whenever I see an owl I know that someone is watching over me and guiding me through the unknown.