In 7th grade, my friend Ashley and I were at the mall and decided to head into a Merle Norman store to look around. As we made our way through the store we ended up at the wigs. At that moment, an employee came over to us and said “wigs are for serious customers only.” We immediately felt stupid and left. Last week, I stepped into a Merle Norman store for the first time in over 20 years and I was a serious customer.
I don’t belong here
For most of my life, I have had long hair. Over the past 10 years, I have been growing it out until it gets ridiculously long and then cutting it to donate. I was just approaching that point when I found out there was a good chance I was going to lose my hair.
The first time I heard the word cancer out loud related to my situation was back in December, right before Christmas. I say out loud because if you are anything like me, you scour the internet looking for answers for every little ailment and somehow end up convincing yourself you have cancer every time. After typing that I actually really hope you aren’t anything like me in that sense. Anyways, hearing the word cancer in a doctors office was a Christmas gift I didn’t have on my wish list and hoped came with a gift receipt.
Since I’m telling my story a bit backwards I will fill you in on a few details from the beginning that I will eventually talk about in more detail in future posts. Adam and I found out we were pregnant at the end of August last year and I had a miscarriage in September. I wasn’t properly diagnosed in September and ended up having some lingering issues that carried on until about November. It wasn’t until December that I found out that my miscarriage was actually the result of a molar pregnancy. If molar pregnancies aren’t caught and treated early enough, they can quickly turn into cancer. Sometimes, even if they are caught early enough, they still can progress into cancer.
After my molar pregnancy diagnosis I was referred to an oncologist. My OBGYN assured me it was just to make sure nothing had spread and not to worry. The thing is, when you are being referred to an oncologist, not worrying isn’t really an option. I remember sitting on my couch after making my appointment and having a full-on panic attack. I couldn’t catch my breath, I couldn’t believe this was real, and I couldn’t shut off all of the thoughts running through my head. Haven’t I been through enough? When is this going to end?
When I walked into the cancer center, I looked around and thought, “I don’t belong here – no one belongs here.” I felt empty and numb – I couldn’t control what my body was doing and I was just along for the ride. When I heard my name being called, I was ready to get it over with – let’s do the tests, you can tell me I’m all clear and I’ll get back to living my life.
Adam and I sat in a room with airplanes on the walls waiting for the doctor. I was told that I was referred to the best oncologist and he just happened to be a pediatric oncologist. That day I met Dr. Kobrinsky, the biggest advocate for my health and the light that was going to get me through this.
Throughout this journey, I have realized that, for me, the hardest part is not knowing what is going on. Ever since September, every day became a waiting game. Waiting for results, waiting to get better, and waiting for this to be over.
Dr. Kobrinsky walked into the room, introduced himself and started off by saying exactly what I needed to hear. “You have been through a lot. We have failed you. You must be scared, you must be worried and we need to get you some answers.” At that moment I was scared but I was relieved. I trusted that he was going to find out what was wrong and he was going to take care of me.
That day, Dr. K told me that I most likely had cancerous cells growing in my body. He told me about treatment, he told me I would lose my hair. Based on my health history, he ordered up a long list of tests to make sure that if and when I had to start treatment, I would be able to handle the chemotherapy. Over the next month, I spent a lot of time at the clinic getting the following tests:
- PET/CT scan
- There were two spots found that needed further testing, so I had an MRI of my liver and a mammogram and ultrasound on my right breast. Everything came back fine. Dr. K called me on Christmas to deliver the good news, “Merry Christmas, your liver is fine.”
- EKG, Holter monitor and Stress Echo
- I have had some heart arrhythmia problems (Wolff-Parkinson-White Syndrome and PVCs) so we wanted to make sure everything was ok with my heart before treatment. Everything came back fine.
- Hearing test
- Some chemo drugs can effect hearing so he wanted to get a test before I were to start any treatment because I have some hearing loss in my left ear.
- Pelvic Ultrasound
- We got a nice glimpse of an abnormal group of cells in my uterine muscle that we named Tommy tumor.
- And numerous blood tests
After we got all the results back from testing, we found out that the abnormal cells were confined to my uterine muscle and hadn’t spread. I wouldn’t have to start treatment and we would just continue to monitor my HCG levels. If they were dropping, the tumor was shrinking. If, for any reason, my HCG was to go up, I would be starting treatment.
Mondays at the lab
Over the next 4 months, I went to the lab every Monday morning to get my blood drawn. Every week, I would wait in anticipation for my numbers to come back. I would celebrate my weekly drops, but be a nervous wreck until I saw those numbers each week. I had a dark cloud hanging over my head constantly.
While Adam and I were on vacation at the end of March, my test result hit my phone. I opened it and saw that my numbers had gone up. My heart sank. The moment that I had feared for months was here and real: I had cancer.
We got the news the day Adam and I were going to spend snowboarding at Lutsen Mountains. I tried my hardest to pretend I was normal all day, but I couldn’t turn off the thoughts that had started consuming my brain, although beer helped 🙃. I do remember sitting outside overlooking a beautiful view of mountain with the sun was shining down on me and feeling a presence with me and watching down on me. I felt an overwhelming sense in that moment that I was going to be ok and that I was not alone. I was going to get through this.
When we got home the next day Dr. K called me and we met to talk about our plan of attack – I would be starting treatment the next week. As crazy as this sounds, finding out I had to start chemo was a relief. I finally had an answer, I had a goal and I was going to get better. Having been introduced to my plan way back in December, I was prepared and ready. On April 5th, I started fighting harder with chemotherapy and I am finally kicking this thing after all these months.
I look like a chemo patient
At the end of last week, my hair started to fall out. I knew the moment would come… I had been preparing for it since December, but when we shaved it all off, it became real.
I had a wig ready to go and I had ordered a few hats to make this easier on me, but I feel like I lost a part of me when I shaved my head. Some might say it’s just hair, but it becomes part of who you are and how you express yourself. I’ve always loved my hair and I’d be lying if I said I didn’t miss it. I put a hat on my head the other day, looked in the mirror and said, “I look like a chemo patient.” I then laughed and thought, you are a chemo patient – but don’t get so down on yourself; you’re a pretty cute chemo patient (at least that is what Adam tells me every time he looks at me… I seriously don’t know how I would do all this without him).
So grateful
There is no doubt in my mind that the people in our life and the forces around us are helping get me better. Throughout this journey, my spirits have been held high and it’s thanks to all of you. You have sent me positive vibes, kept me in your prayers, thought about me, and I want you to know I feel all of it. You are all holding me up and allowing me to stay positive in a time where it could be easy to lose that, and I truly believe it is helping me heal.
Thank you to everyone who has sent gifts, who have provided us with food, who have donated to our GoFundMe (which already exceeded its goal in just under a week 😭), who have reached out to see how we are doing – we are so grateful for each and every one of you – I really can’t say it enough.
I’ll leave you with my video for the week. It was a tough one to look back on and edit but I think it’s important to share these real moments. For some reason I thought I could chop off my hair on my own but needed to call in for some back up. Thanks to Kellie and Adam for making something so tough a little easier on me and sweet Violet at the Centre for Hair and Wellness in Moorhead for helping me find the perfect wig so can feel like myself.
Thanks again for listening, love you all so much,
Shannon
