This is the first time I have written any part of my cancer story. It’s not perfect; in fact, it’s far from it. It’s also long. If you have been to therapy before, you know that the first time we speak or write a story that is based in traumatic experience, we are sometimes surprised. This is pretty personal. I am telling this story because I know there are people out there who have had this experience, or have a good friend or family member who has, and maybe this will help you understand. Maybe you won’t feel alone (you’re not). I also hope it may help you or a loved one advocate for yourself. Our bodies know things; mine did, and I’m glad I learned how to listen.
I graduated from the University of Michigan at the end of April, 2007. My parents and best friend Julayne attended the ceremony, and we had family over for cake afterwards. We spent time on the back deck in the sun, enjoying each others’ company. I had been burning the candle at both ends for weeks leading up to graduation, finishing requirements for my last-minute double major, coordinating the art show for the sexual assault prevention agency I worked for, and enjoying the fact that I was 21 and there were certain privileges that went with that fact. So as my family and I celebrated at our house, I wasn’t very surprised when I became overwhelmed with exhaustion and needed to take a nap. It wasn’t like me, but I figured my nervous system was finally able to relax for the first time in months. So I napped for a while then carried on with my life, like you do when you’re 21 and you don’t really know yet what it means to take care of yourself or listen to your body. Unfortunately for me, I learned these lessons in a really hard way.
I was planning and packing and preparing for a huge move: in September, I would pack up my car and drive across the country to Seattle, Washington for graduate school. I was excited and terrified, but mostly excited. I had already signed a lease for an apartment, chosen my courses, and obtained student loans. This was happening!
It was happening until it wasn’t. I was driving home from work one day in a very stressful traffic situation, and began to feel pain under my arm. When I finally made it home, I examined myself in the mirror and saw a protruding lump. I immediately panicked and went to the urgent care in my small hometown. The doctor there said it was probably nothing, maybe an infection, and prescribed antibiotics. He told me if it didn’t go away in 3 days, to call my regular doctor. I told him I didn’t think it was an infection, but he insisted. We went home.
I called my primary doctor first thing the next morning and scheduled an appointment. It was a few days before I could get in to see him, so I continued on the antibiotics with no change. When I got to my appointment, the doctor was immediately concerned. He started asking if my family had a history of breast cancer. Um, what? No. And why would you ask me that anyway? He said he figured it was probably not that but wanted to be sure. Then he said I needed an x-ray ASAP. So I started getting worried.
The next few weeks are a blur when I try to remember them. There were a number of appointments with various doctors. There were lots of scans and injections of radioactive substances to see what was happening on the inside. Lots of not eating in the evening to prepare for a scan in the morning, and no breakfast. I felt poked and prodded and still didn’t have an answer. Finally, I was referred to a surgeon. It was a Thursday afternoon when I met with him. Julayne went to the appointment with me because I was nervous. My jaw nearly hit the floor when the nurse walked us to the exam room and shut the door. “Julayne, they put us in the cancer room.” I think it was in that moment that it finally, truly hit me that I could have a deadly illness. The surgeon came in, looked at the lump under my arm for about 10 seconds, and told me I would be having surgery first thing the next morning. He would shift his schedule so I could get in immediately. We walked back to the parking lot and the first thing I did was call my supervisor to tell her I wouldn’t be at work the next day. Then I cried on the way home.
The next morning, I had a biopsy at the hospital. Very few times in my life had I been under anesthesia and I was afraid. I was afraid for a lot of reasons—that I might die while in surgery, that I would wake up and have cancer, that my whole life would change. I came out of surgery bawling and gasping for breath. I believe at that point, my body knew the extent of my health issues but my brain didn’t. I had a wonderful nurse in the recovery area who calmed me down and helped me breathe. The surgeon came in to give me a follow up report. The first thing out of his mouth was “it’s not good.” I knew that. How could I not know? He couldn’t give me any details yet; I had to wait for the biopsy report, which would come in early the next week. Then Julayne came in and sat with me until I was allowed to go home.
As you can imagine, the weekend was very long. I felt like the moments ticked by so slowly. My family tried to carry on normally; we had family over on the weekend, and I tried to distract myself with planning for my move. Some dear friends sent me a package full of music to help me focus on something else. Julayne and I had a lot of “what if” conversations. I don’t know what I would have done without her during that time, or any time, really.
Monday came and went without any contact from the surgeon. I was getting really nervous. If you know me personally, you know I don’t like to sit around and wait. So by Tuesday afternoon, I was crawling out of my skin. I contacted the surgeon’s office and asked for a call back from the surgeon himself. Time passed. I was sitting in the living room with my mother, stepfather, and Julayne when the phone rang. I must have jumped 3 feet in the air and rushed to answer. The surgeon started out by telling me things were not good (looking back, I really could have used some more appropriate bedside manner but whatever). He said, “I am sorry to have to tell you this, but you have cancer.” More specifically, I had lymphoma, but he couldn’t tell me what type it was (the survival rates for Hodgkin's Lymphoma and Non-Hodgkin's Lymphoma are dramatically different). He then gave me a phone number for an oncologist. I said thank you and hung up. In this moment as I write this, my whole body is responding. It feels something like standing on the edge of the cliff, and it’s the moment when you lean forward and you realize you are about to fall, and there is not a damn thing you can do about it now. And hey, I actually changed my mind and don’t want to go cliff-diving, so can someone help me get back up? My family looked at me expectantly, and I had to say out loud: I have cancer. I remember a sob leaving my body that didn’t sound like me; I felt separate from everything happening. My mom rushed over and hugged me, and my stepdad left the room, overcome by his own grief and fear. I cried for about two minutes. Then I decided it was time to do something. Julayne and I went to dinner, went to the bookstore and bought a book about coping with a cancer diagnosis, and then went to the grocery store and bought high-antioxidant fruits and vegetables, because that’s what we knew to do. Sitting with the information didn’t feel like an option. Doing something did. When I look back on this, I wish I was able to sit with this information for a while and let it sink in, but that's not where I was at the time. It hurt too much.
I woke up the next morning to find my mom in the kitchen. I asked her if everything that happened the night before was a dream. I distinctly remember the sadness on her face, and the drop I felt in my stomach when I realized that no, it was not a dream. This was real life. And I didn’t know how much longer I would get to have that, because I had cancer.
I had Stage 1 Hodgkin’s Lymphoma. I had a softball sized tumor under my arm, growing into my chest cavity. The day it started to hurt was the day it didn’t have any more room to grow inside. It was an abnormal presentation of Hodgkin’s, so it was hard to diagnose. I had a bone marrow biopsy to be sure it hadn't spread to my bones; to this day, it's still the most painful experience I have ever had. When I came in for check-ups with the oncologist, residents came in and tried to diagnose me, but couldn’t (one of them thought I had cat scratch fever, and although that can be a serious thing, it made me laugh a little bit. I would have given a lot to have that instead). My prognosis was good because there was a lot of research showing that the ABVD Chemotherapy regimen followed by a 17 day course of radiation was effective in treating my cancer. This type of chemotherapy is known to have some of the worst side effects as intravenous toxic medicine goes, and of course, like any treatment, there was a cost—physical, emotional, and mental. Like possible infertility, secondary cancers later in life, and reduced lung functioning. So that’s what I chose, if you call that a choice.
I researched. I ate pizza. I buzzed my hair in preparation for losing it as a chemotherapy side effect. I sat with my mom and Julayne at the kitchen table and said, “the chemo hasn’t even started making my hair fall out yet!”, then reached up, gently tugged, and pulled a chunk of hair right out of my scalp with no effort. I cried on the front porch, then found tiny hairs on my pillow until I was completely bald. I drank as much water as I could to flush out the toxins that were all at once keeping me alive and making me extremely ill. I took a lot of walks with Julayne. She was my lifeline, my reality check, and a shoulder I cried on regularly. Those walks helped me keep my perspective. They were a small thing, but they meant a whole lot. She sacrificed so much of that summer because I couldn’t be in the sun, couldn’t be outside because my immune system was compromised (and summers are very dear to us Michiganders—they are beautiful and brief). After my first chemo treatment, I was at such risk of secondary infection that I had to stay home for a week straight (I was pretty displeased about this). I went to chemotherapy every other week. On my non-chemo weeks, I worked at the sexual assault prevention center at the front desk, although toward the end of my chemotherapy treatments, I couldn’t work at all. I distracted myself with a boyfriend who did not sign up to date a girl with cancer, but did anyway. I went shopping and bought adorable dresses to wear to my chemo treatments, because I was going to make the best of every damn minute I could, including the 200 minutes I spent on Monday mornings hooked up to an IV.
I watched my sweet mom watch me as I reacted more and more intensely to chemotherapy, a deep worry behind her smiles and reassurances. She went to every treatment with me. She took care of me when the most I moved in three days was from my bed to the couch. I was in my early 20's, supposed to be independent, and she was making me baked potatoes for every meal because that’s all I could stomach. She was my biggest cheerleader (and still is). She watched her child, her first born, her baby, suffer and struggle and feel so sick. To this day I don’t know how she did it with such grace and love. I think she knows how grateful I am for all she did for me and all she endured during those 7 months, but if not: I love you, mom. Thank you so much.
So that’s all I’m going to say right now. There is a part 2 to this blog post, but it’s still coming to the surface—like how hard it was to adjust to life after cancer, and the impact it continues to have on me. Sometimes we push things down inside of us when they’re really hard, and we bury them and hope we never have to see them again. But our bodies have this way of reminding us what we have been through, sometimes at the strangest times. I think about having had cancer every day in one way or another. But you know what I think most often? How beautiful the tiniest things in life are, and how I get to be here still. I am alive. And if you’re reading this, so are you.