At the age of 29, I was diagnosed with advanced cervical cancer. I had regular medical care, but an irregular pap went undetected and by the time I began showing symptoms the cancer had progressed considerably. To say that my diagnosis came as a complete surprise, would be an understatement. On that day, my life was completely disrupted and irrevocably changed.
I want to impress upon you how costly this disease is, both in terms of dollars and in human suffering. My experience has committed me to education and prevention. No woman should have to endure what I did.
Before I was diagnosed, I truly didn’t know the depth of change that cancer brought. In fact, when I received the call from my doctor, I wasn’t alarmed, I assumed my treatment would be quick and without much inconvenience. My doctor’s response was sobering.
“I know you are always trying to be positive,” she said “but this is a really big deal. You need to listen to everything the oncologists tell you because the best hope you have is that you survive your treatments. Hang up the phone, call a friend, and have someone come over immediately because you are about to start a huge process.”
We got off the phone and I paced through the house. When it finally hit me, my knees buckled. I fell to the floor in tears. My only hope for survival was incomprehensible. I would have to undergo a radical hysterectomy in which my entire reproductive system was removed. As a young, single woman this fact leveled me. I taught prenatal water aerobics and work as a doula, which is a greek word for “mother’s helper.” I have helped many women give birth and care for their little ones during those first few weeks of life. My daily work had reinforced my own dream of motherhood. It was maddening to me that as I had worked helping women through this stage of life, the cancer had also worked quickly and quietly stealing it from me.
What I thought would be a brief stay in the hospital turned into three weeks, with multiple surgeries and complications. I left the hospital with an open wound that went from my navel to my pubic bone. I had a pump attached to my body to keep it continually clean. Each day a visiting nurse came to see me. She cleaned the wound, which involved burning it open to make sure that it didn’t close improperly. It was then re-bandaged. I cannot understate the experience of having my body change from something beautiful to something diseased and broken. I couldn’t look in a mirror at my body for over two months.
I had great support and found ways to cope with humor and friendship, but the reality of my loss kept pulling me under. The surgeries left me severely disfigured and unable to bear children.
After my surgeries, I had to immediately start chemotherapy and radiation treatment. I got both treatments simultaneously, which felt like a death sentence. Yet, somehow the daily treatments became routine. The repetition of hospital rooms, nurses and doctors became familiar. Surviving was my new job. Like anyone preparing for work, I packed my lunch and drove to the hospital for daily radiation treatment. In some ways, radiation was amazing to witness, like a science fiction movie. I would lie on a bed and was measured and marked with permanent tattoos, which I still have. Then the room became a red laser grid. Like a GPS system the lasers found my tattoos and radiated their formation. It was oddly beautiful. I wanted to bring someone to witness with me, but of course, that was impossible.
Then every Tuesday, I would go to chemotherapy. A special IV nurse would hook me up, which was difficult and painful because my veins tended to collapse. I spent hours sitting in a lounge chair in a big room with other people also sitting in these chairs. We were an airport terminal with lazyboys and IV drips. I tried to relax while being pumped up with chemo cocktails, steroids and anti-nausea medication. I had to just bear down and try not to throw up as I was force-fed poison meant to cure me. I spent the rest of the week trying to recover.
The Radiation/Oncology building was depressing, but it was my temporary home, so I made it my mission to liven it up. I began bringing flowers with me when I went. Yet within days the flowers would be dead. It really bummed me out, and I asked one of the nurses what they were doing to my flowers since my flowers at home would last weeks longer. “Allison,” the nurse said, “they’re being radiated, there is a five inch lead wall and no windows here.”
I was shocked into silence, realizing that the flowers were foreshadowing changes in my body. I tried to remain resilient, but couldn’t help also feeling that I was experiencing my own petal-loss.
During my treatment and recovery I didn’t meet other cervical cancer survivors and didn’t have access to the Internet so I couldn’t connect with survivors virtually. Even my doctors weren’t able to provide me with any contacts or support groups. I felt I was being under-served and was certain that there was more to be done for survivors. This feeling catapulted me to action.
The Hicks Foundation
Only months after recovering from chemotherapy and radiation treatments, I started the Hicks Foundation. This was the first foundation of its kind in the country founded by a survivor.
My initial goal was to raise money to provide free cervical cancer screening for women who had no health insurance. But as I learned more about HPV and the new breakthroughs in medical technology, like the HPV test and vaccine, I wanted to do more! I became convinced that we could eradicate cervical cancer in Vermont.
In a few short years, The Hicks Foundation has grown into a vibrant organization committed to education, prevention and the eradication of cervical cancer. We work with local providers to host Free Screening Days; we lead educational gatherings to educate women about prevention and spread accurate medical information; and we advocate and work on legislation to support cancer prevention and access to HPV vaccination. Our Free Screening days generate publicity, and get the word out that cervical cancer is a preventable disease.
The Hicks Foundation has had many successes:
- We have partnered with local health care providers to give free care for hundreds of Vermont women at our Free Screening days
- We have successfully advocated for state funding for the HPV vaccine
- We have begun education programs that will help women get health care and learn how to prevent HPV and cervical cancer.
- I have been blessed with local and national recognition that highlights the work the Hicks Foundation continues to do. In 2006, I was honored by The Vermont State Legislature with a resolution for this work, and the City of Burlington declared January 20, 2007 the Allison Hicks Free Cervical Cancer Screening Day.
- I was also presented with a 2008 National Kennedy Center award for the and the Women in Government Presidential Leadership award for my efforts.
I currently serve as co-chair of the Vermont Cervical Cancer Working Group which works with policymakers to create programs to target those most at risk of the disease, providing them with medical services. I also speak locally and internationally about these issues where I highlight the importance of education and access to medical care in the eradication of cervical cancer.
These days, my life is very busy raising money for the Hicks Foundation and working with others to eradicate the disease. This past March my medical treatments, once again took me into surgery. My previous hysterectomy and abdominal surgeries had herniated causing great pain and intestinal problems. Luckily I had a very successful surgeries hnd the healing process has begun again. I am doing well. I still struggle with health issues and am managing my loss and depression, which seems never-ending. But I have always been a caregiver and a nurturer, and am committed to helping women lead healthy and happy lives. I am so grateful that my story can continue to live on in the Hicks Foundation as a story of survival and one that inspires women to take control of their health care and live cancer-free.
I am confident that we can eradicate cervical cancer in Vermont and beyond.
Thank you for your support of the Hicks Foundation and be in touch!