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.