Recently I celebrated my 12th cancer-versary. Wow, can’t believe it has been that long. Some days it seems like yesterday and other days it seems as if it were all a dream. I am sharing my story as support for those who are going through something similar.
On April 16, 2002 I went to see my gynecologist for a regular check up. Minutes into the exam she tells me that she feels something and ushers me over to the hospital for an ultrasound. What? I have plans to go pre-birthday shopping…
I walk over to the hospital and wait for what feels like an eternity to be called back. Meanwhile I feel like my bladder is going to explode from all the water they are making me drink prior to the test. I feel miserable. I call Malcolm several times from the hospital phone (must have forgotten my cell), he doesn’t answer so I leave a vague message. Finally, I am called back to the ultrasound room. The tech is not very friendly. She seems to be taking forever to capture all the images she needs. I really, really need to pee. And it is so cold in here! The tech stands up and says she’ll be back in a few minutes, she needs the doctor to review the images to make sure they have all they need. You mean I have to lay here freezing and willing myself not to pee? Eventually, she comes back into the room with the doctor. He says that he would like to get a few more pictures. Great, still can’t go pee. At last, he says he is finished. I race down the hallway to find a bathroom. Relief. I head back towards the doctor’s office. As I walk back through the waiting room Malcolm is there. Some how he managed to find me through my cryptic message. He walks back to the doctor with me. As soon as I return I am ushered into the doctor’s personal office. She tells me I have a rather large (grapefruit sized) tumor on my left ovary. She tells me it is probably nothing to worry about. Tumors are common in young women and can be lots of different things, but there is a small chance it could be malignant. I knew it was malignant. I remember clearly flipping through the channels one day and stopping on Oprah just long enough to see a clip of a young girl sharing her cancer story. I remember turning off the television and thinking to myself that is going to be me one day. I knew. She tells me I’ll need surgery to remove it. She wants me to see a specialist. She is going to set something up and will call me later that day. I make it to the parking garage before I break down. Malcolm hugs me and tells me everything is going to be okay. Later, at home, the doctor calls and tells me I have an appointment the first thing in the morning with a specialist…a gynecologic oncology specialist. I call my parents who are out of town to tell them the news. I don’t get much out before I start crying so I pass the phone to Malcolm.
The next morning we head to St. Luke’s to meet with the specialist, Dr. Beavers. My mom has my Aunt Minta accompany me to the doctor. When we arrive the nurse says the doctor is still in surgery, but he doesn’t want us to leave. She tells us to go down to the cafeteria for awhile and she will update us. After an hour or so we check back in with the nurse who says the surgery has been extended, but the doctor definitely wants to see me today. I notice that the nurse has sent all the other patients home. She tells us to come back after lunch. Aunt Minta takes Malcolm and I out for a bite to eat which is a nice break. When we return to the office the doctor is ready for me. He wants to do surgery. Tomorrow. Tomorrow’s my birthday…happy birthday to me. I ask if we can wait one more day. He says that’s fine and we schedule surgery for first thing on the 19th.
My 24th birthday is a fun-filled day of pre-op appointments and blood work. Malcolm takes me to a movie to try and distract me. We see The Sweetest Thing. I don’t think I actually watched any of it. Yippee, it’s my birthday!
The day that changed everything, April 19, 2002. My parents, Malcolm, and I arrived at St. Luke’s at 6:30am for my 8:00am surgery. I had never had any type of surgery and I was so nervous! I was sick to my stomach and spent most of my waiting time in the bathroom. I went into surgery knowing that if the tumor was malignant I would probably have to have a oophorectomy and possibly a hysterectomy. The surgery was supposed to only take a few hours, but ended up taking over six. I woke up in recovery and tried to sit up because I was so nauseous. I have to puke! I need to sit up or I am going to throw up! One of my doctors was sitting in recovery with me. He gave me some medicine to stop the nausea. He told me to get some rest, that they would transfer up to my room in a little while once I was more stable. I asked him, “what was it?” He said, “it’s cancer. I got it all.” I said, “okay, thank you.” I knew it. Now what? I’m supposed to be moving to St. Louis in a few weeks to start graduate school. I drifted off back to sleep. Later I wake up in my hospital room and am surrounded by family and friends. No one mentions the C-word and I am too tired to think about it. And thirsty…so thirsty, I really wish I could drink something. I fall back asleep. I remember waking up in the middle of the night and seeing my mom asleep on the couch and Malcolm sleeping in the chair next to my bed. He didn’t go home.
The next morning the doctors came to see how I was doing. My parents, Malcolm, and visitors all step outside while they examine me. They check my incision. I look as though I have been gutted down the middle…the incision must be 10 inches long, straight up and down my belly. The doctors are pretty satisfied with my progress, but are concerned with my lung capacity so they give me breathing treatments to do. The doctors leave and I can hear them talking in the hallway, but I can’t hear what they are saying. One of the doctors returns, the same one that was in recovery with me, Dr. Tedjarati. He asks if he can sit down for a minute. Then he tells me that my family wanted him to talk to me…they think I don’t know what the surgery revealed. I tell him that I remember what he told me, that it is cancer. I understand. What is the point in dwelling on it. It’s cancer. Do we have to talk about it? He then goes on to tell me that he is confident he got it all and that once I am out of the hospital I will be sent to MD Anderson and be given a treatment plan. He tells me a committee of doctors will meet to discuss the most appropriate plan of action. Wow, there isn’t just a standard plan? He then says, “can I ask you a personal question?” hmmm, wonder what he wants to know? Just for his personal research, he was wondering if I knew it was cancer before hand. Yes, I knew it. I lie and say no. Why didn’t I say yes? Why didn’t I tell him about the time I saw Oprah? He said he likes to ask his patients because he is a big believer in the mind/body connection. The doctor leaves and my family comes back into the room. No one mentions the elephant in the room. I know and they know.
I stayed in the hospital for a little over a week regaining my strength. Malcolm was by my side the entire time. I knew he was special, but I never expected him to take off time from work to make sure I was okay. We weren’t married or even engaged at the time. We had been dating for a year or so. I was on some heavy duty painkillers while in the hospital and some crazy things came out my mouth. Why is there a spoon hanging on the wall? I would say things and in my mind I knew they didn’t make sense, but they just came out. I think I kept my mom and Malcolm entertained for the week.
Two weeks after my surgery, my parents, Malcolm, and I go to MD Anderson for the first time to meet my new doctor and discuss my treatment plan. We wait for an eternity and then we are asked to wait in a small conference room. My new doctor, Dr. Gershenson, comes in along with Dr. Tedjarati. Dr. Gershenson is serious. He may be serious, but he knows his stuff. He is the best in his field. He tells me that the preliminary results are back from St. Luke’s pathology department. The results indicate that I have a germ cell tumor. A type of ovarian cancer found in teens and young women. Prognosis is excellent with a 95% survival rate. Treatment isn’t too bad, and I won’t even lose my hair. The mood in the room lightens some. I got this. My doctors tell me they would like me to have a series of tests done before I start treatment to obtain a baseline. They tell me they would like to see me again in a few days after the tests are completed and once they receive the official pathology report back from their own pathologists.
A week later, my parents, Malcolm, and I all return to MD Anderson to discuss my test results and get my final treatment plan. Dr. Gershenson and Dr. Tedjarati come in and take a seat. Again, Dr. Gershenson is serious. He doesn’t smile. His seriousness is somewhat unnerving. Dr. Gershenson tells us that he has received the final pathology results from MD Anderson’s lab. He says that unfortunately they contradict what St. Luke’s found. He says I have Clear Cell Ovarian Cancer. A very rare cancer found in less than 5% of all ovarian cancer cases. He says that the pathologists at St. Luke’s had probably never seen this cancer before and that is why they always run their own pathology…their lab sees thousands of cancer cells a day from all over the world. Great, I have some super rare form of cancer. It is odd enough for a 24 year old to have ovarian cancer and now I have a type that is rarely seen at all? Dr. Gershenson gets more serious. Prognosis for Clear Cell is not good. It has less than 15% survival rate with treatment. He tells me I am stage 3C…advanced. I feel like I suck in all the air in the room. Don’t cry, don’t cry, don’t let them see you cry. I keep my eyes on the doctors or the floor. I try to show no emotion. I ignore the fact that my father is sitting next to me trying to hold back his own tears. This is all a joke. This can’t really be happening. Don’t cry. If you start crying you won’t be able to stop. Dr. Gershenson begins to talk about my treatment plan. I will receive 6 hours of chemotherapy every 21 days for 6 cycles. After that we will reassess. This is the standard treatment for ovarian cancer…he says they don’t really know what works for Clear Cell. He tells me that I will begin tomorrow. What? I am supposed to be moving to go to graduate school, not fighting cancer. This is not the way things are supposed to go. He leaves the room and Dr. Tedjarati begins to go over the side effects of treatment with me; nausea, numbness in hands and feet, hair loss…the list goes on and on. He tells me not to worry. He says I’m in good hands and he is confident I will do well. I ask him if I will have to have another surgery. He says he doesn’t know. He says that if they had known the exact type of cancer I had when they did the initial surgery they would have been more aggressive and removed both ovaries (not just the one impacted by the tumor) as well as given me a hysterectomy. They didn’t because I was young and may want to try and have children one day. Will I even be able to? He continues to explain that I will have blood work done every week to assess my white blood cell count and every three weeks to monitor a tumor marker (CA125) to see if treatment is working. He hands me a folder full of hospital information as well as handouts regarding the treatment plan, drugs used, etc. Great.
I remember lying in bed that night thinking about how my life had changed dramatically in the last few weeks. This is just going to be a bump in the road. Why not me? I can handle this. With a positive attitude, a great medical team, and God on my side, I can get through this. I think the common response when people are faced with terrible news is to ask “why me?” My outlook was different. Why not me? I didn’t want to view myself as victim in this situation; where something was being done to me. I wanted to be in charge of the situation. I wasn’t going to let cancer control me. Why not me? I am no more deserving or undeserving than the next person. What should make me immune to obstacles in life? Mind over matter. That became my motto.
I was a little nervous before my first treatment. I wasn’t really sure what to expect. When my entourage (Mom, Dad, Ashlie, and Malcolm) and I arrived at the hospital the nursing staff was a little taken aback. I think they wanted to put a restriction on how many visitors I could have with me, but they must have sensed it would do no good. They found a room that would accommodate all of us. My entourage just stared at me the entire treatment. If I moved an inch they were ready to bounce…they were watching my every move. I really wish you would stop staring at me. I am fine. After my first treatment my family began to relax a little which was good because there was a long road ahead. My hair began to fall out about two weeks after my first treatment. Before I started treatment, I cut my hair short similar to Ashley Judd’s in Someone Like You. The morning my hair started to shed I decided I didn’t want to deal with clumps of hair falling out for days so I went and had it shaved off. Again, I wanted to be in control not a victim. Malcolm took me and even shaved his own head as a sign of support. He really is something special. Most guys would have been long gone by now. He is my rock. My family is good support, but Malcolm is my strength. Malcolm and usually my mom attended all subsequent treatments and the tension during treatments slowly lessened and the staring began to fade. My test results showed that the chemo was working. I made it through the standard 6 cycles of chemo. Dr. Gershenson recommended that I do an additional 12 treatments. He stated it was experimental and that most people can’t make it through all 12 treatments because the side effects become too severe. Sounds fun. I ended up continuing with the treatments and was able to complete all 12 with out any problems. After undergoing 18 months of chemo I was finally finished. Yippee, I can get back to real life. And that I did, I completed a graduate degree, got married, had a family, and have being enjoying every minute. I have a blessed life.
Looking back I still think, why not me? Perhaps, God chose me because He knew I had the strength to persevere. Throughout my journey many people commented on my strength. I guess I stayed strong. I mean, what choice did I really have? Lay down and take it or make the best of the situation and fight like hell? I chose to fight like hell and keep a positive attitude. Mind over matter.
If you have made it this far, thanks for reading my story. And to all those that were there along the way, thank you. I couldn’t have done it without you!