How my story begins: I was working as a nurse full time on a post-surgical unit at a local county hospital. My husband and I had moved to the area two years before and had bought a house not three months or so before I was diagnosed. I had just celebrated my 25th birthday and was beginning to make friends in the area. Life was spent going out, enjoying the summer, biking, painting the house, normal life activities, etc.
I went in for my routine Pap a few weeks before my diagnosis. I had my first Pap at 20ish and every single one always came back as ASCUS. I was therefore having Paps every six months, but my doctor did not seem worried as the the results never went beyond that. I finally had three normal Paps in a row, and I asked if I could wait a year instead of six months. He agreed with me since every colposcopy following the ASCUS diagnoses came back normal as well. So I waited a year. My Pap in 2011 was normal; my Pap in 2012 was stage 1b1 adenocarcinoma with a 3cm tumor.
How I felt after diagnosis: I was petrified. I received my diagnosis late in the evening as my doctor tends to run behind in clinic hours. I went home devastated and cried myself to sleep thinking I was going to die.
My treatment: I have had more treatment that I even care to think about. My GP referred me to a gyn onc who initially offered a radical hysterectomy. I declined and asked about the trachelectomy since I felt I met the criteria. She agreed that I did, but she did not feel comfortable performing such a procedure with me as she was not doing such procedures a lot herself. She referred me to Indianapolis to the IU Simon Cancer Center where I met another gyn onc. She agreed to the radical trachelectomy (RT) but only if I had four rounds of chemo first to aid in shrinking the tumor and helping to ensure clean margins. I agreed.
I had four rounds of Cisplatin and Taxol locally with another gyn onc and then went back to Indy for surgery on Valentine's Day 2013. I was bald, sick, and scared, but came out of the RT with clean margins. I went home two days later with a catheter and six weeks to heal before I returned to work.
Followup included Paps every three months. But after nine months of my period not returning, I spoke up to my local gyn onc. She ordered an ultrasound, which found a mass on my right ovary. A further PET found another tumor. The local gyn onc decided removal was warranted and in Jan of 2014, I underwent a right oophorectomy (removal of ovary). He also recommended radiating the pelvic and abdominal wall following removal. I refused. Radiation scared me dearly.
At this point, I decided to take some time off treatment. We did a 'watch and wait' approach per my request while I improved my health. I lost weight, worked on my stress levels, and began to eat better and exercise. I felt a lot better, but it didn't do much in terms of halting cancer growth. Eight months later after another PET scan, another mass was found on my omentum (layer of fatty tissue that supports and covers the intestines and organs in the abdominal area). My local gyn onc wanted to remove it right away, but I did one round of IVF with my husband before. We currently have four frozen embryos waiting for use in Indianapolis (unfortunately, at this point, I don't know that we will use them since my health is now so bad). Following the IVF, I went into surgery in Indy again for removal of pelvic wall tumors and my left ovary. My left ovary, unfortunately, was benign. I was devastated about losing it. I hated the thought of not having normal hormones.
Following surgery and healing, I underwent more chemo. This time I did Avastin and Topotecan. Four rounds later, I was not responding to therapy and experienced some tumor growth. My local gyn onc said he had no other options for me and I asked for a referral. I was sent to University of Chicago for a clinical trial. There I received medi4736 and tremulimunab. Long story short and six months later, the clinical trial left me with damaged adrenal glands and worsening cancer. Basically, it didn't help and killed my adrenal glands. I am now on chronic steroids because of it.
I got married not long after the clinical trial was over, so I took a break from treatment. In October of 2015, I decided to try some alternative treatment another woman had luck with and traveled to Ensenada, Mexico to go to a local clinic. I didn't expect a cure but had some hope. I was there for six weeks receiving alternative therapy and living by myself. I met my husband in Phoenix after six weeks to head home for awhile and return if I had any good results.
I went into renal failure on the drive home and not two days after being home, I stopped urinating altogether. I had a catheter placed and then two days later bilateral nephrostomy tubes. I decided against going back to Mexico and made an appointment with Cancer Treatment Centers of America in Chicago. I went there right after Christmas for three days of testing and seeing different physicians.
After one day of being there, I was in so much pain they sent me to their ER and I was admitted with a bowel obstruction. I was sent to surgery three days later for a bowel resection and tumor debulking. I had 14 blood transfusions and was basically told I was lucky to be alive. I was saying goodbye to everyone before I went to the OR.
Following a 3 week hospital stay and a very long recovery, I was left with an ostomy. I was eventually able to have the neph tubes removed and my wound healed. I then did six rounds of carboplatin with the hopes of keeping the cancer at bay. My scan in August 2016 showed NED, so I asked for a colostomy reversal attempt. However, during surgery, another tumor was found in the colon and my doc declined to reconnect me, citing problems later down the road. He removed some tumors and then closed me up.
After six weeks of healing from surgery, I underwent another four rounds of chemo with a med called Alimta. This also did not help. Following the PET scan, he continued to offered other chemo regimens, each with a 10-20 percent chance of response and all the same symptoms. I declined. Instead, I agreed to special genomic testing on my tumors from 2016 through Foundation One.
The results showed a mutation in the tumor and recommendation of a drug called afinitor for off-label use. My insurance company denied and I had to get special approval for the meds with Novartis paying the $10,000 a month price. I started it the beginning of May.
I am currently with an ostomy and in the beginning stages of chronic kidney disease because of tumors in my pelvis pushing on my kidneys, bladder, and ureters. I have stents to keep my ureters open and am close to needing neph tubes again. The ostomy works fine but I do not enjoy it (although the alternative at the time was death).
I am also stuck on xarelto, a blood thinner, because of previous blood clots in my legs due to tumors pushing in my iliac arteries. I am on hydrocortisone because of the clinical trial and am on pain medicine because of chronic neuropathy from the first time I did chemo. Among other problems, I take a handful of pills every day just to live. Lastly, I also have a rectovaginal fistula that causes constant problems and leakage and cannot be fixed.
If the afinitor does not help, I have decided that I will no longer be seeking treatment but only palliative care. I am tired of needle sticks and feeling miserable and being a guinea pig. I only agreed to this medicine because it is a pill and I am not paying for it. Otherwise, I just want to live out my life in peace.
My life after cancer: Cancer has taken almost everything from me. I lost my fertility, the ability to adopt, energy, ambition, and even my job. Cancer has taken intimacy and sex from me and has provided me with anxiety, depression and agoraphobia. My friends try to help but have their own lives to live and my husband is probably the one who ultimately suffers. We are hardly intimate and he is the one stuck dealing with me when I feel ill or just can't function.
Where I am today: I am currently on disability, without a job, and spend most of my time at home. I am agoraphobic at times and have a hard time in social settings because I am afraid of either my ostomy exploding or my fistula leaking so badly it can be smelled by anyone. I spend some of my free time sewing and quilting, but most of 2017 has been spent ill, in the hospital, or just being depressed.
What I want other women to know: Cervical cancer is no joke. It is not easy or readily always curable or the "good cancer to get." Cervical cancer screening is important and HPV does not discriminate. The vaccine does not cause cancer and every child should receive it. It will not make your child sexually active and the stigma around it is silly. All women should get Paps starting at age 21 and HPV testing at age 30 and followup is imperative. Being diagnosed with cervical cancer is life changing.