It was June of 2006 and I was 16 years old. School was out for the summer and I was experiencing some abdominal pain and digestive issues. I was working as a cashier at Fareway and I remember thinking my intestines felt sore every time I had to bend down to face a shelf. I also went on a trip with my family to our cabin and noticed my abdomen was very sore while trying to get up onto the top bunk. I even began feeling like there was a mass that swayed back and forth if I moved my body that way and my abdomen began to look very bloated. When I ate, I would become full very quickly.
My mom took me in to our local clinic and the doctor said she believed I was just very constipated and sent me home with laxatives. Before I left, they took some images of my abdomen just to be sure they weren’t missing something. After using the laxatives, nothing had changed. I received a phone call from the clinic saying I had a cyst on my right ovary that would need to be removed.
My parents wanted a second opinion and took me to Mayo Clinic in Rochester. I was given a CAT scan and Dr. Ishitani, the pediatric surgeon, told me that I had a 5 pound tumor (about the size of a volleyball) originating from my right ovary that would need to be removed as soon as possible. He also told me that it may be malignant-a word I had never heard before. He explained that it meant cancerous. I was stunned that I had a 5 lb. tumor in the first place, let alone that it could be cancer. I looked out the window of my exam room in disbelief, thinking it could never happen to me. I was only 16 and couldn’t imagine losing my long beautiful hair to chemo. To this day, I still remember those feelings I had whenever I see the KAHLER hotel sign in Rochester as this building was directly within my view while looking out the window that day.
I met with the surgeon and his planning assistant to book the surgery for the next day. I was told I would have to be opened up from my breast bone to pubic bone to remove the tumor and to have exploratory surgery to make sure they removed everything. The assistant looked at me and said, ”So that means no more bikinis.” At the age of 16 I remember thinking that was kind of a jerk thing to say to a teenage girl and later wore one post surgery to a water park with my friends just to spite her.
That night my mom and I made plans to stay at a nearby motel where I got very little sleep because I had to take laxatives to prep for surgery and was up going to the bathroom all night. My dad and siblings drove to Rochester in the morning.
I was the first surgery of the day. It was a 6 hour surgery. My mom recounted to me that my surgeon came out of the OR looking exhausted and said that he would need to call in extra help from the Rochester Methodist Hospital to complete my surgery, as it was extensive. At the end of my surgery, the surgeon informed my parents that my tumor was indeed cancerous and my mom shared with me that my dad wept as he informed my grandparents of the news.
I woke up in the ICU connected to tubes and feeling nauseas. I remember my mom being there, my Aunt Lisa, and Grandpa Dostal. I could hear their voices in the background and a nurse asking my aunt to give me a bed pan. I was wheeled back to my patient room on the pediatric floor at St. Mary’s Hospital and shortly after, my surgeon came in to tell me that I had Germ Cell Ovarian Cancer; a rare ovarian cancer that affects young women. I would need at least 4 rounds of chemotherapy and would receive my treatment inpatient at St. Mary’s.
I shed silent tears and went into survival mode. The next week was spent lying in my hospital bed trying to rest and recover from major surgery. I had a GI tube that was taped to my nose and remember trying not to gag on it when talking to visitors. I had a long line of starey strips along my incision and had to wear a Velcro cloth brace to protect my fragile abdomen. I experienced terrible gas pains that left me gripping the edge of the bed as my digestive system tried to recover. I would get up and walk up and down the halls on the pediatric floor with my dad or whoever was available to assist me. One nurse took me on walks in a wheel chair to play piano. Playing piano on the pediatric floor would be an activity I would later find comfort in doing during my chemo treatments.
I wasn’t allowed to eat much of anything during that first week in the hospital and was released at about 90 lbs. After getting released, my dad made me a steak and I wolfed it down at impressive speed. At home there were so many flowers from friends and so many families that made us meals. Our church family ended up mowing our large lawn for us while we were away at the hospital. My good friend Cindy took me out for Chinese shortly after getting back home and it felt so good to be doing high-schoolish activities again. I started school in August, shortly after my surgery and remember wondering how my peers in my Junior class would react to me looking so thin and pale. First day jitters did not affect me nearly as much as in previous school years, as what I just went through seemed monumental in comparison to the first day of school.
Shortly after starting school, I had to go back up to Mayo Clinic to get my blood drawn to see where my cell count was at, to see if it was high enough to start chemotherapy. It was, and I was admitted to the hospital for 5 days at St. Mary’s for my first round. The process for chemo ended up being much simpler that I had imagined; I was just hooked up to an IV to the chemo liquids and sat in my bed for 2 hours watching movies and doing other quiet activities in bed each night. I would wake in the middle of the night to use the bathroom a lot because of all the liquids and the chemo made me sweat a lot too, so I would go back to sleep in a cold sweat. I can still picture myself with my CD player and head phones listening to calming Christian music if I was having trouble sleeping. I journaled about my experiences in the hospital, which I found to be soothing. I also wrote updates on my Care Page for my friends and family to read during my hospital stays. I received cards in the mail and hung them up in my hospital room and enjoyed visiting with friends and family who came to see me.
While the care I received was excellent, I longed to be with my friends doing normal high school activities instead of being cooped up in the hospital. My mom and I would make jokes that we were going to bust me out of the hospital or race a wheel chair down the hall for some much needed fun. I utilized the teen lounge where there was a big screen TV, games, etc. I met two other girls who were a year younger than me and had the same type of cancer. I was surprised to meet two other young women with the same rare cancer at the exact time I was going through it and I can’t help but wonder if God brought us together for support. We did the Look Good Feel Better program together and learned all about wigs, etc.
Back home, shortly after my first round of chemo, I was taking a shower washing my hair and handfuls of hair started falling out. I knew I would lose my hair but it was a rather shocking experience. I got my hair cut into a shorter style to lose it in smaller amounts. One day while sitting in chorus practice, a well meaning friend asked if I knew that I had some bald spots in the back of my hair. I was slightly mortified, but glad he asked me so that I was aware of it. A good friend of mine would help take shedding hair off my shoulders and back in the girl’s bathroom. I am so grateful for that friendship I had during that time in my life.
After my second round of chemo, I was losing enough hair that I needed to get my head shaved. It was different seeing myself with no hair, but I was grateful I wouldn’t have any more matted hair or itchy scalp. I decided to wear a few scarves and beanie caps at first. The first day I walked into school with no hair and a hat on,I felt like the whole school was staring at me as I walked to my locker. It was hard being the center of attention in a very small school, for something I didn’t want attention for.
I would take my homework with me to each chemo treatment but found that I could only understand so much without the help of my teachers. Chemistry and Geometry were particularly challenging for me and Spanish was a bit challenging as well. I found myself going from a student looking like she was going to be Salutatorian of our class to getting C’s and D’s. This was really hard for me as I always tried my very best when it came to school work. During my study halls when I wasn’t in treatment, I spent every minute I had meeting with my teachers trying to understand all I had missed out on.
On one particular day I was feeling exhausted post chemo and was falling asleep in my chemistry class. My teacher noticed and told me to try to stay awake. Afterward I knew I wasn’t going to have enough energy for my last class of the day and went to the office where my mom worked as the high school secretary. I came in to tell her this and started crying rather loudly, telling her she would have to call my geometry teacher to tell her I was too tired to come to class. I walked out upset, looked back to see a bunch of students staring at me, and shoved the front door of the school open. I went straight to the side building doors and into a small room that had been set up for me to take naps should I need it. I sat on the floor in the dark of that room and wept, wondering how I was ever going to work through my homework and get it done in time, make good grades, etc. while I was away for treatment. I didn’t think I would ever have to use my nap room either. I felt like the world was crashing in on me and there was nothing I could do about it. My mom followed shortly after and tried to soothe me and ask that I keep my voice down so as not to disturb those in class. I eventually calmed down and took a nap, only to be awakened by the football coach that was coming in to use the room after school got out. I mumbled something like, ”I’m sorry,” got up, and went back to my locker to gather my things after school.
I think this point was probably when I felt myself unraveling. I was a perfectionist when it came to my school work and the fact that I was getting low grades because of something I had no control over really upset me. I began feeling quite depressed after my third round of chemo and had to miss out on a lot, such as Homecoming and getting my driver’s license when other peers were getting theirs.
I remember my last round of chemo and the nurses treating it like a celebration. While I was glad it was my last round, I just felt numb and didn’t feel much of anything but depression. I looked in the mirror and saw an ugly, pale, bald girl. I wasn’t getting much sleep at all at night because I was so depressed and didn’t see how my life would get any better.
My condition only got worse and my friends and the staff at school were noticing a big change in my disposition. ”At least you have your faith,” one teacher told me in the hallway. I got asked to go to the guidance counselor’s office at one point during a study hall and was given a care package of snacks, brought them back to study hall, and the other kids scoffed in jealousy. ”Well does anyone want any? You can have some if you want,” I said, but there were no takers. I could barely concentrate on what teachers were telling me anymore when I went to ask them for help and I could tell they were having to exercise extra patience with me. One teacher called me a ”sicky” in class in front of my peers and I remember feeling mortified and told my mom, who later had a talk with her. I would watch the clock all day in my classes, just waiting for the final bell to ring.
On my 17th birthday and after my final round of chemo, I had to go in for a scan to make sure all the cancer was taken care of by the chemo. My scan came back negative for any remaining cancer and while relieved, I just felt nothingness. I was discussing the results with an oncologist in a patient exam room and then my appointed hospital social worker walked in. She told me she wanted me to fill out a depression scale because she had some concerns. I answered the first couple questions and froze on a question about not wanting to live anymore. I couldn’t admit to myself or anyone else that I was feeling that way. So, the social worker began circling the hard questions for me, indicating that I was severely depressed. I sat there as she told my mom she felt I should be admitted into a mental health institute at their earliest opening. I went out to eat with my parents after that appointment for my birthday and just cried through the entire meal because I knew I was going to have to go to a mental health hospital soon.
I went home and basically just waited for a bed to open up at Generose Hospital in Rochester. After being admitted, I attended group each day where we would discuss our goals. There was an arts and crafts time, patients could learn to play guitar, and there were activities like movie and popcorn night. A psychiatrist, music therapist, and chaplain visited with me on different occasions. One of the staff put signs up in my room that said ”When Perfect Isn’t Good Enough.” I think they were supposed to help remind me that I was doing the best I could given my circumstances and needed to show myself grace. I was at Generose close to Christmas time and did not feel the sense of joy that the season typically brings as I had just been through one of the hardest things I’d ever experienced and was somehow supposed to pick up the pieces after I was declared in remission.
The psychiatrist decided to put me on an antidepressant and after about 5-7 days in the hospital, I was released. Within two weeks, I started feeling much better and back to my old self again! I was enjoying things and a smile returned to my face. My heart no longer felt like a cold stone in my chest. I decided to go out for a play and for track for a third year in a row. My mom told me it was nice to see me smiling again.
Unfortunately my cancer returned about a year later in the form of a nodule near my lung. The doctors thought it was most likely because some cancer cells had strayed and formed a malignant nodule in my chest cavity. I didn’t have to have chemo this time, but I had to be opened up again from breast bone to pubic bone because they wanted to be sure to get any remaining cancer cells. They removed the nodule but said they had seen what they referred to as ”peppering” of cancerous cells throughout my peritoneal lining, which protects your organs. Being that they could not tear out the lining and that the cells were so tiny they did not even appear on a CAT scan and did not seem to be growing, they closed me back up.
I was then declared in remission when I was 18. I had to go in for check-ups every 3 months, then 6, then once a year, then every 2 years. Now that it’s been over 10 years since I’ve been in remission, I follow up with my primary care provider if I have any concerns. To this day, I do not know the status of the ”peppering” of cancerous cells, but I am choosing to trust the Lord and His faithfulness to me.
I know I’ve posted these verses on my blog before, but they have become life verses for me, given my experiences with cancer and depression. I hope they are an encouragement to you and reminders of the Lord’s faithfulness.
Psalm 103: 1-5
1Praise the Lord, my soul;
all my inmost being, praise his holy name.
2 Praise the Lord, my soul,
and forget not all his benefits—
3 who forgives all your sins
and heals all your diseases,
4 who redeems your life from the pit
and crowns you with love and compassion,
5 who satisfies your desires with good things
so that your youth is renewed like the eagle’s.