i asked my new friend to write to me about her story to accompany this image i snapped after our lunch in cherry creek together.
Last year, I celebrated my 7 year cancer anniversary by participating in the COCA’s Jodi’s run for the first time. I had no idea the emotions I would experience that day. Crossing the finish line with my daughter on my shoulders was like a dream to me and you captured that special moment with your beautiful photographs. That moment was also special because I sought you out so I could obtain a copy of that photo and connected with you and… what are the chances that we would both be be survivors of the very rare (ominous and special!) ovarian carcinosarcoma?
June 25, 2006 was a typical, beautiful Colorado day. I went for a run and reflected on how beautiful the day was and how lucky I was for my friends and family and how I loved my profession as a veterinarian. Later that day, I had to go to a picnic and as I got dressed, my shorts were oddly snug around my waist and I noticed by abdomen felt asymmetrically firm and I was even able to palpate a mass. It did not hurt. It was just there. I remember that morning so distinctly. 10:30am run. 2pm: abdominal mass. On Monday I called my doctor and asked for an appointment. I was told the first available appointment was mid-July. I then asked if I should go to an emergency hospital or could I be referred elsewhere because I knew something was not right. I called a few times that day and eventually the doctor made time for me that afternoon and she concurred: mass. Then the rest of the week was ultrasound, bloodwork, X-rays, CT scan. My head was spinning. I was driving all over Denver for all my various diagnostics with printed out Mapquest directions (before the days of smart phones!). I was on my own and was so overwhelmed and at the end of diagnostic day #2, got lost in a hospital trying to leave after my CT scan and could not find the exit. When I finally found the exit, I was on the other side of the hospital and could not find my car. I felt trapped in a nightmare, which had only just begun! On Thursday 6/29, I met with the gyn-oncologist. He said that though the CT scan interpretation said I most likely had cancer, he felt that based on the large size of the tumor, I more likely had a 95% chance of a benign tumor. PHEW! Nightmare over! I was going to be ok! I knew it!
The following week, July 3rd, I had my surgery for my “benign” ovarian mass. In the recovery room, I woke up confused as to why it was so late in the day and my eyes focused on the anesthesiologist’s sad eyes looking down at me. She told me my gyn-oncologist would be with me in a moment and then I got the sense that my tumor was not benign after all. Sad. My doctor came to me and said that indeed frozen sections demonstrated malignancy and he had to open me up again and take out omentum, lymph nodes, etc. Final diagnosis was ovarian carcinosarcoma. I googled it. Yikes! Median survival time of what? My doctor told me that it was the first time he had seen this type of cancer in his career and that it was rare and he really did not know much about it and showed me the paper that I had already read on-line prior to the appointment. He told me that I may have been cured and may not need additional chemotherapy or surgery. Because he had not seen it before, he recommended I go out of state to a university for a second opinion. Then my doctor went on vacation that afternoon for 2 wks. It was very hard for me to figure out how to get a second opinion as many cancer hospitals require a referral and I could not obtain one because of my doctor’s vacation, no matter how hard I tried. Also, when I was told to go out of state, what does this mean? Where should I go? There are so many states and so many hospitals? I was overwhelmed!!! Lucky for me, my high school friend’s wife worked with the Ovarian Cancer Research Fund and she was a huge source of information and support. Additionally, my sister is a surgeon in Connecticut and had worked with a gyn-oncologist at Yale named Dr. Rutherford. I flew out to CT for a consultation. Amazingly, he is the expert on our crappy cancer. He told me: You have a very bad cancer. It is very aggressive and spreads everywhere and the first place it will go is the other ovary. Because so much time has passed since your surgery, we do not have time to go back to surgery and remove your remaining ovary and uterus and you must start chemotherapy immediately. So, I had my 6 rounds of carbo/taxol and the rest is history.
As you have experienced, illness is difficult. I learned that truly, you are your best advocate. I do not see myself as assertive but in June 2006, I knew something was not right and kept pestering the first doctor to see me. And if she did not have time to see me, I would have seen another MD because I could feel a distinct mass that did not belong there. I was also upset with Dr. #2. I felt stranded by him. I spent so much time trying to get that second opinion. But what I learned with that is that things happen for a reason. Had I had “optimal” care, I might have had my ovary and uterus removed and then I would not have my daughter. After chemo was completed, I pursued fertility treatments and was told repeatedly by 2 fertility specialists at that clinic that my remaining ovary was damaged by the chemotherapy and I was in menopause. They recommended I join a support group for menopause, investigate donor eggs, or adoption. I could not accept this and after a year of being told to give up, went to another clinic and was told I had a 25% chance of pregnancy. It was a long road but after 3 years, had a little girl.
I think that the whole cancer journey for me was easy-peasy compared to other patients. How lucky am I – I am alive and also, I have my happy life! 8 years ago, I could barely even allow the idea of a happy family to enter into my hopes and dreams for the future. Sometimes I look at my husband and daughter and wonder if I am dreaming, am I really alive? And now 8 years later, I try not to allow the idea of relapse to enter into my mind but that fear still tiptoes in to my head more frequently than I like to admit. But when it does, it reminds me to live in the moment. When the sky is a beautiful Colorado blue, I take note! When my daughter asks me to paint her little fingernails, i savor each little dab of pink. I make a point of saying nice things to my husband and daughter (hopefully frequently enough!). Though I believe I am cured, my gyn-oncologist reminds me that I have a “special” cancer. I still need imaging studies, now annually. Though I am a lifetime member of the Cancer Club, I am so happy. Cancer is unfair and it sucks but it we can still live our lives and be happy. Though the fear is still there, it is lower grade and ebbs with time. I PROMISE!
June is a sensitive time of year for me. It should be a happy time, right? But instead, I have had unpleasant and vivid flashbacks of June 25, 2006 as well as the unpleasant weeks that followed. Because of Jodi’s run, my anniversary is much more celebratory and much less scary. It is fate that you took that victorious and joyous photo of me and my daughter last June. That was such a special day and I am so glad that I shared it with you and that it brought us together.