How my story begins: Before I was a cancer patient, I was suffering from severe anxiety and PTSD that resulted from years of sexual abuse at the hand of my (now ex) husband. That abuse was the reason why I hadn't been to my gynecologist for several years, allowing the cancer to quietly grow; I couldn't bear the thought of going and subjecting myself to that.
My two boys and I left him less than a year prior to my diagnosis, so I essentially went from the frying pan to the fire. Dealing with both a debilitating mental illness and cancer has been more difficult than I could ever possibly put into words.
A month after my (now ex) husband and I separated, I started to spot in between menstrual cycles. I had so much going on at the time that I figured it was stress and decided to do a "wait and see." It didn't happen again for a few months, and then I was bleeding more often than I was not. I made an appointment with my GYN; during the appointment, he said that the exam appeared normal. Several weeks later, when my Pap results returned, I received a call from his office. The results were abnormal, and he wanted to do a colposcopy with possible biopsy. He was able to see a lesion on my cervix and took a biopsy. After a week, the biopsy results were in. When he called, he told me to sit down, but I handle these things better from my feet. It was confirmed - squamous cell carcinoma. A few weeks later, my newly appointed oncologist staged it at 1B2.
Life before my diagnosis:
My story is as much about coming back from domestic abuse as it is surviving cancer.
How I felt after diagnosis: I was terrified. I was a newly single mother, with both my boys under the age of ten. I lost a lot of sleep, and I didn't tell my family until I was officially diagnosed. At the time, no one knew the true reason I had left my husband, so I didn't divulge how awful it was for me thinking about being touched and subjected to exams and strangers and all the things that come with being seriously ill.
Telling my family and friends: This was incredibly hard for me. I've always been a guarded person who doesn't like to ask for help. I've always thought that asking for help appeared as weakness, and I wanted nothing to do with looking weak.
I have a large family - 4 siblings and my parents are still together. So I gathered everyone and told them all at the same time. It was shocking for them, especially since they had no idea that I had even been going through testing.
My treatment: I had a hysterectomy at the end of August 2013, along with the removal of 20 lymph nodes. The pathology on all the removed tissue was negative for cancer, so I was sent on my merry way. After a year of no scans (fault of my oncologist), my appendix needed to be removed in December 2014. During the surgery, it was discovered that my right ovary was a solid mass, and my right fallopian tube was actually fused to the appendix. It was also discovered that my right ureter was constricted, causing hydronephrosis in my right kidney, and I had to have a stent placed. It was confirmed that the ovary was a recurrence of the original cancer, and a PET scan confirmed travel to nearby lymph nodes. I started combination chemo and radiation at the end of January 2015. 35 rounds of daily radiation, with low dose cisplatin weekly. The radiation made me incredibly sick, and I lost 20 pounds in 4 weeks.
Once radiation was complete, I had a month to recover. It was decided that the next round would consist of cisplatin, taxol and avastin every 3 weeks for 4 courses. The first two weren't too bad, but the third caused horrible nausea and vomiting. A CT scan after the third revealed that tumor shrinkage wasn't where my ONC wanted it to be, so he added an additional 2 courses and changed out the cisplatin for carboplatin. The 4th and 5th courses both made me ill for 9-11 days following treatment. After the last course, I was so severely dehydrated and malnourished that I suffered a grand mal seizure and was hospitalized for three days. I changed hospitals the morning of the seizure and was put on a chemo break due to the severity of my side effects. I started maintenance avastin September of 2015 and a December PET scan showed NO EVIDENCE OF DISEASE! I continue to get avastin every three weeks. I'm incredibly grateful for this drug; it's keeping me stable and alive.
How I felt after treatment: This is so difficult to put into words. This is what I wrote in a blog post recently:
"Turning back to a life that moved on without you is like trying to get back to a book after several unread chapters have been torn out."
Everyday is a struggle, but everyday is a day that I wasn't always sure I would have, so I am grateful for it.
What was most difficult for me: Physically, being constantly sick to my stomach was the worst. Being nauseated and unable to eat all the time makes you wish for death.
Emotionally, the most difficult thing was all the pelvic exams. It's still incredibly draining for me to expose myself like that, and each exam (even now), I have to focus on my breathing and keeping myself present so I don't slip into a trauma-related flashback.
What I did to help myself: During my darkest days, when I wanted to give up, I thought of my boys. I can't leave them; they need me. And I refuse to let them down. They're the real heroes in this story.
I've also always been a writer at heart and a lover of words, and I've kept a journal for as long as I can remember. When I was posting status updates on Facebook, a friend told me that it might be helpful to start a blog. I decided to heed her advice, and I've been posting to my blog ever since. I still keep a private journal as well.
My life after cancer: Life these days is measured in moments. My divorce was legally finalized a few weeks after the recurrence was discovered, and I continue to live with my parents. I wouldn't have made it through treatment without my mother's incredible help with my kids.
My headspace is generally good these days. I've worked hard to fight through the anxiety and PTSD leftover from the abuse, and I'm pleased to say that I've made great progress. I am grateful for every single day, and I don't think I've ever been happier (in a fundamental way) than I am now.
Where I am today: I started a new job! My hair is growing, and we have a few fun family things planned over the course of the year. We've also just been spending loads of time together. We live close to Chicago, so we became members at Adler planetarium. We love space and science in our house!
While I wouldn't have chosen it, cancer allowed me to refocus myself. It gave me a new lens, and I appreciate what used to seem insignificant. I consider my story a success story, no matter how it ends.
What I want other women to know: You're not alone!! I attended a local support group a few times, and all the other women in the group had ovarian cancer. There wasn't anyone else that could truly relate to me and my struggle. It can be a lonely place, and it's important to know that there are others who have similar stories.
How I will try to help others: I'm in the beginning stages of starting an awareness and support foundation. I think it's important to remove the stigma surrounding HPV. Also, where I'm located, there is no official cervical cancer support, so I want to start something with a strong presence for all the other women and their caregivers who feel lost and alone in their fight.
Any additional information you'd like to share: My blog address!
http://dearcancergetout.com