HOW I BECAME A SURVIVOR
Life is never the same after you hear the HPV Test “C” word. As the doctor shone the bright lights on my cervix, he noticed something bulging from it. At 31 years old, I just had a C-section with my second child nine months prior. I was healthy with a perfect STD profile Test and Pap smears for over 15 years and no symptoms. The doctors said it was a “fibroid”, and I pushed for the mass to be removed. Baffled, the doctor sent it to the pathologist, believing it wasn’t a tumour.
The next day, I received the dreaded phone call to come in to speak with the doctor. That day, my life went from B.C. (Before Cancer) to A.C. (After Cancer). As I heard the doctor saying, “radical hysterectomy, radiation, chemo, adenocarcinoma cervical cancer,” I was in disbelief.
That same day, my Pap HPV result arrived as NORMAL. Had the tumour not been bulging, they say I would have gone home and been dead within a year.
Three months were a blur.
The std test was the start of my death path. I had my radical hysterectomy on August 19, 2005. They removed my cervix, uterus, a third of my vagina, appendix, and 44 clear lymph nodes. I also received five weeks of IMRT (Intensity-modulated radiation therapy), which put me in a sur-gically-induced menopause. This was a very difficult time for me, as my two young children had to move in with my parents while I recovered.
I want to say that once I tested and beat the STI-induced Cancer, it was over; however, the hard part came later. It is so important to deal with the emotional/hormonal/spiritual side of being an “HPV survivor.” I mistakenly marched past the survivor desk in my hospital’s cancer treatment centre.
Three years later, I suffered a breakdown.
Was it exhaustion, depression, or ADHD?
Why was the old Shawna not the same? After meeting with a psychiatrist specialising in cancer survivors, I got my diagnosis of PTSD due to the experience. This often mimics depression/ADHD. Discovering this was the beginning of my healing.
I worked feverishly to overcome my STD Lab issues. After research, therapy, a year off from work, bio-identical hormones, support from those who loved me, and much prayer-| OVERCAME cancer. After a difficult divorce, I reconnected with my high school sweetheart, whom I married in 2011. He loves me despite the issues. Having experience, I want to support women and their partners as they navigate through the physical/sexual issues that can test a relationship. I remember feeling so unattractive, I feel like a failure, while adjusting to the physical side effects of HPV Swab Testing with Cervical Cancer. I feared I would never be the same. The sexual issues survivors face can be daunting.
Please know the value of networking with other survivors. While many won’t experience PTSD or psychological issues from their diagnosis, be on the lookout for those who may develop these symptoms. With time, support, and prayer, you can truly be a survivor with a story.
JOANNE’S LAW: ADVOCATING FOR CHANGE
By Anne Mari
Our lives changed forever when my sister, Joanne, unexpectedly got her diagnosis of terminal, late-stage gynecologic Cancer. We were devastated by the news and needed to make plans for Joanne’s care as her health deteriorated quickly. In a very short period, Joanne needed around-the-clock care, and we were forced to make tough decisions about her care. Joanne was not married, nor did she have any children. Our father is deceased, and our mother is elderly with medical conditions of her own. Taking care of Joanne and getting her safely to all her chemotherapy treatments, HPV checks, and doctor visits became difficult. We all have our jobs and our responsibilities, but this was one that I could not walk away from -this was family.
Terminal illness does not leave much time for HPV Virus test research, nor does it wait for any resolution to occur. I applied for Family Medical Leave at my place of employment; however, I was denied since Joanne was a sibling. Siblings are not eligible under the current law. Disappointed but not giving up, I appealed that decision, citing ‘in loco parentis’ because of our family situation.
However, it was denied once again.
Having no other option, I made the difficult decision to voluntarily resign from my position of 17 years to help take care of my sister until she passed away. I do not regret this decision to resign and would certainly make the same decision all over again. For some people, though, the loss of employment would be devastating.
While I am not an HPV nurse by trade, I accepted my new position as a caregiver and underwent training by critical care nurses in our home. Hospice was not an option for us due to Joanne’s medical situation, so our family took care of her until she passed away on February 13, 2009.
As I thought about our STD experience, I realized that we could not be the only family in Pennsylvania in this situation. No one law can dictate who is “family” anymore.
Death, divorce, separation, and single people all play a role in today’s family unit.
Pennsylvania law should include a provision allowing siblings under special circumstances, like my sister’s, to be eligible STD-tested individuals so that we may take protected leave from our jobs.
I approached my state representative with draft legislation modelled after several other states passed similar statutes. I testified in our state capitol before the labour relations committee, where the bill seems to stall with each introduction. We have official written support letters from reputable organisations encouraging this legislation and advocating for work, family, and life balance. They include HPV Home screening with the National Test Partnership for Women and Families, Pathways PA, the Susan G Komen Pennsylvania Affiliate, the National Cervical Cancer STD Coalition, the American Cancer Society, and the Disability Rights Legal Center.
Who would have cared for Joanne if I had not sacrificed my livelihood and job? Today’s economy differs from one in which anyone can choose between caring for a family member or keeping their job. Unfortunately, without this legislation, this is a harsh reality for many Pennsylvanians. I continue to gain HPV Carer support from our elected officials and various family caregiving organisations daily. I know what’s involved, from an insider’s perspective, the STD challenges that families face and the decisions made on behalf of my sister and my family. I’m only one person, but I know now I can make a difference for another Pennsylvania family facing similar challenges and, in doing so, honour Joanne’s memory by getting “Joanne’s Law” passed.