How my story begins: Shortly after my new partner and I became involved sexually, I started bleeding. It was time for my period, but I bled for nine days. For years my period lasted only three days. I was thinking that I had the beginnings of menopause (my mother started fairly young) and my cycle was changing. But then I started bleeding again two weeks later. I had scheduled an exam at Planned Parenthood just before the bleeding started again. Unfortunately, they canceled my appointment the day before and I couldn’t get in for another three weeks. On the phone, they asked me if I was looking for“something specific” at my exam. I said just a Pap test and birth control, then was told that I didn’t need a Pap test to get birth control unless I thought something was wrong. I still thought my bleeding was just early menopause, so the exam with a Pap test wasn’t booked as part of that particular appointment.
I had been told previously that even though I was positive for high risk HPV, I only needed rechecks every three years since my Paps had always been normal. At this point, I was about a year overdue for the Pap and HPV check and was waiting for my new patient appointment with a PCP. The wait was about 4 months, and because of other health issues, there was much to discuss and many referrals at the first appointment. Even though by now I had been bleeding almost constantly for a couple of months, it slipped my mind to ask for one more referral to an OB-GYN when there were already so many. A follow up with my PCP was scheduled for a month later to review bloodwork. By that time, I had been noticing small pieces of tissue in the toilet every time I went. I asked for the referral and received it, but my PCP seemed sure it was only early menopause and that I was probably fine. Fast forward another month to the GYN appointment. That doctor seemed pretty confident that I was okay, but agreed to do an ultrasound in addition to the Pap to be “thorough.” Follow-up for results was two weeks later, and even though the ultrasound was clear, the Pap was abnormal. A colposcopy was scheduled for the following week, but the GYN was already sure it was cancer. One week after colposcopy, the results were confirmed. Still optimistic, my GYN scheduled a simple vaginal hysterectomy and bilateral salpingectomy for one week later. When the pathology came back, it was invasive and I was referred to a GYN-ONC. Preliminary staging was 1B1.
I was told by the GYN-ONC I needed a second surgery to remove the parametrium and some lymph nodes for proper staging. They scheduled a CT with contrast and a PET scan which showed an enlarged ovary that had been normal at the first ultrasound and looked normal during the first surgery. It also showed a spot on my lung too small to biopsy. The surgeon was going to leave my ovaries in thinking it was just a cyst, but I insisted they both be taken out including the one that looked normal. When the pathology came back, the enlarged ovary was cancerous and had grown from normal size to about seven inches in 10 weeks. This was now considered stage IV, and “very aggressive.”
Life before my diagnosis: Life before my diagnosis was strange and new. I had left an unhealthy relationship after nearly 20 years, and immediately fell in love with my current partner. We ended up moving in together in a new state and we were still getting to really know each other and explore what we wanted to make of our relationship when I was diagnosed.
How I felt after diagnosis: I was quite shocked that I had cancer. I knew I was sick for a while, but I’ve been living with several chronic illnesses since 2005. I thought I was feeling so awful because of one of my other illnesses worsening. I never expected cancer. The whole diagnostic process to get correct staging took about four months. Every doctor I saw in that time kept telling me I would "be fine" and then finding it was worse than they thought, so it’s been one shock after another.
Telling my family and friends: Telling family and friends was less difficult than it might have been since I had already told them several times over about various debilitating illnesses as they were diagnosed over the years. But the fact that it was cancer this time filled me with anxiety. Both my grandmothers died of cancer and my mother and her husband have both had cancer, so in a lot of ways it was a familiar conversation. It was hardest to tell my best friend who has never been sick a day in her life and and thinks doctors are no better than scam artists.
My treatment: Part one of treatment was five weekly chemo (Cisplatin) infusions during 25 rounds of external beam radiation followed by three brachytherapy treatments. Part two of treatment will begin six days from the time of this writing and will be four infusions of stronger chemo (Carboplatin/Taxol) given once every three weeks. I will have had roughly seven weeks off from chemo and just shy of four weeks since brachytherapy was finished when treatment starts again.
How I felt after treatment: Recovery from surgeries was extremely difficult due to pre-existing conditions. I considered throwing in the towel after each one, but somehow went on with the next steps. Part one of treatment went ok. I felt pretty blah, and had much less energy than usual but I was able to eat normally for the most part even though I had a fair amount of queasiness. I had some minor bowel issues, pain during urination and a couple of sores on my labia which were all pretty much resolved by the time brachytherapy was finished. I developed extreme sensitivity to all smells a couple of days after the chemo had stopped, and developed nausea so bad that I only ate plain pasta and saltines for almost a month. I developed bad headaches and ringing in my ears about a week after the chemo stopped and the tinnitus is still present.
I am anxious and upset at learning that my most recent scans show that the spot on my lung has grown and a second one has appeared, and there is now a spot in my pelvic wall as well. Part two of treatment is to continue as originally discussed and be followed by a new set of scans.....
What was most difficult for me: What has been most difficult is having a new happy life to explore and the very real possibility that it will be cut short. I feel I am probably buying some time with treatment, but it is impossible to know how much.
What I did to help myself: I am seeing a counselor once a week and talking to my mother frequently and just trying to take it one day at a time. I’m not afraid of death, but I’m afraid of the pain I will probably endure at some point, so I try to stay in the moment as much as possible. My partner and I make each other laugh and spend a lot of time just cuddling. We are still able to make love. We’re probably lucky that I had only minimal discomfort the first few times. We’re thinking of adopting a dog and may do so before I finish this part of treatment. I am also planning visits to family and friends as soon as we are able.
My life after cancer: I can’t speak about this much, as I am still in treatment, but cancer or not, I will be doing things that mean something to me and not putting off things that I want to do. I would like to return to physical therapy and take up pilates as soon as I am cleared to do so. I plan to take lots of walks with my partner on the beach. I would love to volunteer at the animal shelter and maybe go back to work part time. I want my life filled with simple pleasures that help me find joy in every day.
Where I am today: Today I am telling my story instead of putting it off, and taking things one day at a time.
What I want other women to know: If you are able to get the HPV vaccine, you should strongly consider doing so. It’s also important to push for more frequent exams if anything ever looks abnormal. HPV is extremely prevalent and it isn’t really talked about much. It’s very important to be well educated about these topics as women so we can protect ourselves as much as possible.
How I will try to help others: I would like to volunteer at the cancer center when and if I am able, maybe as a peer-to-peer counselor for women with GYN cancers.