By Anne Shelley As Told T Carly Breit
“My final surgery removed my urinary system, gastrointestinal system, and my vagina.”
Before I had a complete hysterectomy, my husband, Chuck and I had a very healthy, active sex life. Before I endured numerous surgeries and even more rounds of chemotherapy, I really liked to wear cute little underwear that I, and my husband, loved. Before the start of seven gruelling years of cancer, I looked in the mirror at my fit body and my long, blonde hair and liked what I saw. And right after my final surgery, a total pelvic exenteration that completely removed my urinary system, gastrointestinal system, and my vagina, I thought I’d never feel sexy again. But I was wrong.
This story begins with a backache when I was in my early forties. I was in my first-grade classroom, lugging a terrarium that I’d use to teach about underwater life when it hit me. I felt intense pain from my back to my abdomen. I made an appointment with a new primary-care doctor, who took blood and did a uterine ultrasound, just as a precaution. The ultrasound tech was really focused on my right side, which I thought was weird. She couldn’t tell me why, but the word “cancer” wasn’t even crossing my mind.
I soon learned that my right ovary was enlarged and I needed a hysterectomy, a surgical procedure that would remove my uterus. My gynaecologist assured me that despite the need for this surgery, it “probably” wasn’t cancer. But when he came out to talk to my mom, dad, and my husband afterwards, he said he had been very wrong: it was stage 3 ovarian cancer.
Just days of recuperating and processing later, I had to have another surgery, a bowel resection, because the cancer had spread to my bowel. Over the next three months, I had ports installed in my abdomen and my chest for chemotherapy. I had chemo one time per week for four hours, three weeks per month. The word “exhausted” doesn’t even come close to describing how I felt most days. I was drained.
About two weeks into treatment, I was washing my hair when I pulled out a clump. I couldn’t stop the tears from falling. I’ve always had long, blonde hair—I didn’t even recognise myself. I couldn’t stand the thought of my husband seeing me like this. But I’ll never forget what he said when he did: “I did not marry you for your hair.” He told me I was beautiful and he brought me roses. He also found a hair stylist who works with women who lose their hair during chemo. We laughed and cried as I tried on wig after wig. I would watch YouTube makeup tutorials from a bald woman.
Per doctor’s orders, we waited six weeks after my hysterectomy to try having sex. And since I was going through chemo, we had to plan it for a day between treatments where I would feel the least exhausted. Usually that was the day right before I went back for another round. I was excited to get back to a place where I could be intimate with my husband again. He had been there for me through every treatment, and he held me every time I cried. When we tried to have sex, though, it was so painful. The chemo changes your entire body, and there were times where we tried, but it just didn’t work. For the first time in our relationship, I was the one initiating sex because he was scared to hurt me. I reassured him that yes, it would hurt, but it would get better. He knew I would tell him if it got too painful. With trial and error and lots of lubricant, we were able to get a glimpse of our old sex life back.
Five months and three weeks after my last chemo session, I had a backache. A CT scan, MRI, and PET scan later, I learned that the ovarian cancer was back. And it was aggressive. Another surgery revealed tumours on my bladder and my ureter, which is the duct that urine passes through. I had to have more chemo.
It was even harder the second time around, but I fought through it. I kept my teaching job and I even finished my National Board Certifications in between treatments. We celebrated when the chemo was over—until my next backache three months later.
I am an optimistic person. I always have been. But news that my cancer was back a third time almost broke me. Three times signalled to my doctors that things just might not get better. There wasn’t much they could do, my doctor said. I was told that I had months to live.
I decided I would spend those months living, being aware of every little joy in life. It started on the car ride home from hearing that news when Chuck asked, “Where do you want to eat?” I chose Olive Garden because I wanted those breadsticks. Our waiter, who had no idea what we were going through, served us wine samples all night and made us laugh like we hadn’t laughed in months.
After that night, I started choosing what Bible verses I wanted read at my funeral, I had my will drawn up, and I prayed and prayed. I was still having chemo every week just to keep my impending death “under control.” One day, an exam showed a tumour on my rectum that was growing in real time. They had to get it out before I would bleed out. So back to the operating room I went. It was going to be a long, intense surgery.
Two hours after it started, my surgeon walked out into the waiting room to talk to Chuck. He says his heart stopped and the blood drained from his face. He thought they had lost me on the table.
Instead, my incredible gynaecologist and oncologist, Saketh Guntupalli, told my husband that he found the tumour they were looking for, and he also found more on my bladder, rectum, colon, and an artery on in my leg. They were everywhere, but he thought that they could get them all. If Chuck consented, they could get rid of all of my cancer.
He knew I’d choose a risky surgery if it would give me the chance for more time alive with him and our children. Even though the words “total pelvic exenteration” were absolutely terrifying, he told them to go for it.
After 11 and a half hours of surgery, I woke up to the news that all signs of cancer were gone. I also woke up to two holes in my stomach with clear bags attached. One for urine and one for faeces.
As a woman who had never even farted in front of my husband (we wanted to keep a little bit of that mystery throughout our marriage), this was humiliating. I had to have more chemo too, and this time, Chuck shaved my head. “I didn’t marry you for your hair,” he sweetly assured me yet again.
About six months after that, I was ready to be intimate again, bags and all. I got an ostomy belt that protects and hides the bags, and I got some lingerie. I was almost feeling like myself again, until we started to have sex. To be frank, it wasn’t going in. Something was weird. I went to the bathroom to see what the issue was.
I had my vagina removed during surgery. I knew that. But I didn’t know that there would just be a teeny, tiny hole in its place. The tears poured down my face as I told my husband, “You’re 48 years old. You’re young and have so many years left.” I told him he could leave me and I would tell everyone it was my choice to leave him. He could get out and go find someone who he could have sex with. This time, he told me he didn’t marry me for my vagina. He married me because he loved me, and he still did. He told me that we could make it work.
Since then, my high school sweetheart and I have done just that. We’ve gone to some “naughty stores,” as I call them, to find sex toys. Really, we would just laugh when we tried using them. We’ve had fun exploring what our bodies can do together, and I have learned that I can achieve an orgasm without a vagina. And when I do, it’s good.
My fight with cancer has taught me to never take anything for granted. But it’s also shown me that intimacy is about so much more than sex. A hello kiss means the world. A back rub, a date night, a camping trip in the trailer we decided to buy—those little acts of unconditional love might might not have been as appreciated if we didn’t go through what we did.
I’ve had cancer for seven years, and I’ve been in remission for a little over one year now. My doctors say I will probably be in treatment or in remission for the rest of my life. Cancer is a terrible, terrible thing, but for Chuck and me, it’s led to really beautiful things. We have grown so much together and we’ve overcome every obstacle along the way, in and out of the bedroom.
This article was originally published on www.womenshealthmag.com