How my story begins: I was a normal, busy 33 year old with a home staging and decorating business in Richmond, Virginia, enjoying life with my husband and 2 kids. We had just moved into a new place for a fresh start and I spent 6 months losing 30lbs through a clean diet and was feeling really good. Around this time I got some sort of cold and had a bizarre reaction to an antibiotic, and everything started spiraling down from there in a surreal way.
A year before my diagnosis, I started experiencing abnormal bleeding during periods where it would stop and start, and bleeding after sex. I had been told I had HPV several years prior but was under the impression that it would clear up on its own. I went to a gynecologist who did an ultrasound and colposcopy and later assured me I didn't have cancer, that it takes years and years to develop, but that I should consider a LEEP procedure. The concern wasn't imminent on his part and life was crazy with my house on the market so I kept putting off the procedure. The bleeding after intercourse stopped for several months and I mostly forgot about it, but then it started up again with a vengeance and I was passing large clots at random. I also had a low grade fever I couldn't shake.
After trips to the ER and switching to a new gynecologist, I was diagnosed with CIN3 and referred to a gynecologic oncologist for a consultation. From there, I had a cone biopsy done to determine if I would need a simple or radical hysterectomy. I was very upset to learn that I would need a radical. Before surgery, he wanted to do a PET scan to be sure it was contained to the cervix. It was after that scan that I was given the terrible news that the cancer had spread to my lymph nodes and that I would need surgery, chemotherapy, external radiation, and internal brachytherapy.
How I felt after diagnosis: I couldn't believe it. This had gone from squamous cell carcinoma in situ to stage 3b in the course of a month. I was googling and reading the grim survival rates, how grueling the treatments are, and what exactly life after cancer treatment would be like and I was so terrified and so mad and wanted so badly to resist it all. I had only just been mentally preparing myself for a simple hysterectomy and now my whole world was crashing down on me.
Telling my family and friends: I had been keeping family in the loop already because in the beginning we didn't realize how serious it would all become. After I got the worst news, I delegated my sister-in-law and husband to tell our immediate family. Telling the children was much more difficult but predictable: my teenage son was adamant that I would get through it and be fine and my younger daughter put up a front, her way of protecting herself.
My treatment: On my 34th birthday I underwent a laparoscopic pelvic and para aortic lymphadenectomy in lieu of the hysterectomy, which was no longer indicated in light of the PET scan results. One of the nodes was matted and necrotic, several were visibly positive, and others that looked fine had micrometastases. After recovering, I began Cisplatin chemotherapy once weekly for 6 sessions and daily external radiation for a total of 28 sessions. I then started internal radiation, or brachytherapy, for a total of 5 sessions. I also had several other smaller procedures. There were times when I was wheeled out of an operation straight over to radiation.
How I felt after treatment: Treatment took a huge toll on my body and mind. During treatment, I was on autopilot. I didn't feel human; I felt like a body with a job and my body's job was to show up for treatment. After treatment was over I was finally able to exhale and take in what had just happened, and the tears came. I didn't stop sobbing for two weeks straight.
What was most difficult for me: The fear of not growing old.
What I did to help myself: After treatment, I went on the counterattack. I had brain fog and memory problems so I read books and began learning Italian. My voice was weak so I sang. My muscles were wasted so I pushed myself to walk whatever small steps I could. I ate and ate and ate until my weight came back. I allowed myself to cry when I needed to, sleep when I needed to, and be kind to myself on the days when I couldn't get out of bed.
My life after cancer: I was given the all clear and so far remain cancer free. I am in menopause and have many side effects from treatment that I deal with on a daily basis, and I have to use a vaginal dilator regularly to keep the scar tissue from closing in. I hate cancer. But life is amazing. I quit smoking and started going to the gym. I've been lifting weights, doing yoga, and walking 3-5 miles per day — a far cry from not having the strength to hold myself up just a few months prior. I make better use of my time with family. I start each day with genuine gratitude. I know who my friends are. I think of all of the different possibilities in life and I'm in a hurry to live it. Things are really good right now at 7 months post-treatment.
What I want other women to know: Always listen to your body. If your doctor doesn't take your concerns seriously, find one who will.
How I will try to help others: One of the hardest parts about going through cervical cancer survival specifically was not having anyone locally I could talk to who truly understood. If a support group existed solely for cervical patients, my team wasn't able to track it down. At times I've felt extremely isolated, or awkward talking to friends about my "new normal" and I've longed for that common thread. I'm motivated to start a cervical cancer support group at home upon returning from Cervivor School so that we can advocate together and support one another. Another thing I get a lot is friends coming out of the woodwork to say they've had precancerous cells treated at some point in their lives and they felt shame from having HPV. It's important for me to use my voice to get the word out that there should be no stigma and no blame or shame felt for having this common virus.