How my story begins: The second week of December in 2020, I was busily decorating my house for Christmas and decided to move furniture to put a second Christmas tree up. I was up and down a ladder decorating (Christmas is my favorite!!!) and I developed a backache. That night I got up to find I had some blood (I have been already finished with menopause). I went on to 'Dr. Google' and the next morning while on my Prep I called and made an appointment with the gynecologist. I have NEVER had an abnormal PAP but my oldest daughter did have cervical cancer stage 1B six years prior from HPV.
I got an appointment the next day and the the stars were aligned and the sonographer was there. My gynecologist said it looked like another fibroid and told me to make an appointment for an MRI. I got an appointment for the week I was off, made the appointment early enough in the morning to be able to fit in a mani-pedi afterward and visit my second daughter's new home. While in the pedi chair my gynecologist called and asked if I was alone - I told her I was out but I would go to the car to speak to her. She then told me, and quickly gave me terms about dysplasia and the names of two oncologists. I knew the one oncologist from my daughter and she told me he was on vacation but he would set up a tele-med with me. This was on December 30! There I was, in my car, furiously writing information on a Christmas card envelope! I ran home, made all my appointments and was set for a biopsy on January 6. The onecologist was very stoic and told me it was 2B and it was "nothing like my daughter."
Life before my diagnosis: Very Busy Mom, Educator, and Exercise Aficionado! I have been in education most of my life, and I successfully completed three Master's Degrees in Education: Reading, Special Education, and Educational Administration. I have had extremely busy years and watched my three children get their degrees and in 2019 my son graduated from college and the following week, we hosted a wedding at a movie theater for my oldest daughter!
The week after the wedding we moved my son into an apartment for grad school at Johns Hopkins University for a PhD program. Not to be outdone, we hosted a second wedding in November for my second daughter at a converted mansion! Life was great and we were looking forward to good times ahead!!!
How I felt after diagnosis: I didn't cry, I just went in with eyes wide open and made my appointments because I knew it was the day before a holiday. I immediately got appointments with the hematologist and Radiation oncologist. I just said I would tackle this head-on. I also called my husband's cousin who had gone through this the year before. I didn't get nervous until my post-biopsy meeting when the oncologist told me some more bad news - they were going to change the treatment plan because it is clear cell and it is rare and very aggressive. My main concern was my family. My oldest is out of state in Texas, and my son is in Baltimore. My other daughter is in NJ as I am.
Telling my family and friends: The moment I received the news I tried calling my husband but my "old man" must have been sleeping on the couch. LOL! I then called my daughter on the way home because I was supposed to stop at her house. I told two friends right away and they wanted to come over immediately but I said I had to digest this news myself. Eventually, my friends shared the news to other friends and I had a Zoom call (COVID) with the family to explain everything and to them.
My treatment: My first treatment (January - March) was Taxol/Carboplatin for three cycles with the hopes of shrinking the tumor enough for surgery. It did shrink but I, the eternal optimist, found that I was positive but not enough. The oncologist then suggested the traditional treatment of Cisplatin concurrent with external radiation (April - May). I then went through three Brachytherapy. For the first treatment, I had to stay in the hospital overnight as I bled too much and I will admit it was uncomfortable having a "shotgun" sticking out, but it was over the next day.
Then the waiting...the insurance...on and on. Initially my PET scan was denied and I had to go for a CAT scan which was inconclusive, so the game continued until the insurance company covered the PET scan for when it should have been done, three months after the last external radiation in August. The news was not great. The tumor did shrink but not as they hoped. The oncologist told me this would be a battle I would be fighting for the rest of my life. This week (September) I began three cycles of Topotecan 3x a week and one Cisplatin every three weeks. I am cold capping again (Paxman saves your hair so it is a longer ordeal) but the time does go by quickly and the nurses and the staff are great!
How I felt after treatment: I am still going through treatment and probably will for the rest of my life. I remain optimistic because honestly I do feel great and continue to work out and continue with my daily life. I looked at all the different webinars on Cervivor and went to my oncologist armed with questions for clinical trials and immunotherapy. There are not clinical trials right now at Sloan Kettering for my particular type of cancer and I am not a candidate for immunotherapy because I am PDL-1 negative. So I will keep looking and advocating for myself.
What was most difficult for me: The most difficult part was and is trying to express my feelings to friends and family. I just want to protect my children and husband from the "tough stuff" yet sometimes I just need to have an outlet. This is why this is such a safe haven for me!
I also took a leave from teaching and right now I am going through the beginning of the year withdrawal. If I could continue to work remotely I would as I did all through this ordeal, but right now that is not an option.
What I did to help myself: I am deeply spiritual and I pray daily. I looked for sites to help me make sense of this. Since my particular cervical cancer is not caused by HPV, I started to research DES sites to see if that is a possible cause, I also go onto the Paxman site (cold capping) and I am thankful that I have the Cervivor site!
I have always walked so I walk every morning and I try to get other exercises in every day! I have a treadmill and a spin bike and try to do a program each day as well as strength training. I try to maintain a healthy diet and I still attend virtual Weight Watcher meetings. My cancer treatment center offers acupuncture which I go for weekly and therapeutic massage. I met with the integrative nutritionist and the palliative care doctor through Tele-med.
With the current state of the new Delta variant, I try to stay out of large crowds. Currently, I am helping teachers look for materials virtually.
My life after cancer: I am still continuing my life WITH cancer, and I hope one day I could be cancer-free.
Where I am today: I try to remain positive and optimistic. I wake up every morning and proceed through the day the same way I did pre-cancer diagnosis. I try not to dwell on the "sickness" but focus on my healthiness!
What I want other women to know: WOMEN ARE STRONG!!!! I have remained strong through so many sicknesses in my personal family. My younger sister died at age 23 of a rare disease (at the time--EOCENOPHILIC GRANULOMA) and I watched my mom fall apart and I remained strong for her. I was the primary caretaker for my mother-in-law in my home when she was dying from breast cancer and my own mom moved in and I was her primary caretaker when she was dying of lung cancer. I suffered through six miscarriages and now just watched my daughter suffer through two. My oldest daughter was diagnosed with cervical cancer 1B at age 28 (she is cancer-free) and my other daughter was diagnosed the following year with MS. Through it all, I have looked at each obstacle and marched through with faith and courage. POSITIVITY IN ADVERSITY IS SUPER IMPORTANT... AND FAITH!
How I will try to help others: I am a true teacher. If anyone ever has any questions I am very willing to answer and help if I can or just lend support. Whatever I can do with this group, I am willing!
Any additional information you'd like to share: Sometimes I do go into very sad places. I read stories of so many people so much younger than I am (my daughter included) and I feel a little guilty since I am 64. Then I pick myself up and know that I am a very young 64 and I have so much more to accomplish in this life!