Finding Intimacy After Ovarian Cancer

Anne and Chuck overcame obstacles after surgery removed her vagina


Transcription

[Anne] Hi, my name is Anne Shelley and this is my husband, Chuck Shelely. We came to Colorado about four and a half years ago. Before we came to Colorado I was a teacher in Washington state. I taught first grade.

Everyday I would move these tubs all around the classroom, and after a few weeks of that I noticed that my back started hurting. And I had a pretty bad cough. I went to the doctor for the cough, and as I was leaving I just happened to mention, Oh by the way, I have this really bad backache.

So he told me he was going to order a uterine ultrasound just to see if I had fibroids or something going on like that. He looked at my scans and said, “Well, you know, I would say I’m 90 percent sure it’s not cancerous, but you need to have a hysterectomy.”

And I was in surgery, and the doctor came out to Chuck and to my parents hanging his head and said, “Well, we were wrong. It is ovarian cancer.” My life changed that day.

So I was on chemo three weeks and off one week, every month. You know, I had CT scan. Good news. You are cancer free. Those words were the best words I ever heard.

I think I was only in remission about three months and I got a backache. I said, “Oh Honey, I’ve got a backache again.” We were just thinking, Okay no, no, no, it can’t be.

My oncologist did another scan. The cancer was back aggressively again. He sent that scan to my gyn onc. She sent a message back to him and said, “I’m sorry, she’s beyond my abilities.”

Whispered advice: “Go to a research hospital”

[Chuck] I was promoted and got transferred to Denver. They had kind of exhausted everything in Washington state. There were no options.

[Anne] I had a nurse that whispered in my ear at one point. She said, “You need to go to a research hospital.” She gave me information for the University of Colorado Hospital. I went and met with Dr. Guntupalli for the first time. During those exams, he realized I had a tumor growing on my rectum. He was watching that tumor and every week he told me it was bigger and bigger, and I needed to have surgery. There was no choice.

[Chuck] So Dr. Guntupalli came out first and he was like, “I think we can get it all. I can get all the tumors and add to her life, I think I might be able to get another year. But she’ll lose part of her bladder and obviously she will lose her rectum so she will have to have an colostomy bag.”

Maybe another hour passed and the nurse calls me and says, “Dr. Guntupalli wants to talk to you.”

So he comes out. And he goes, “Well there are more tumors on her bladder and by the time I cut everything off it would be so little that she would be having to go to the bathroom every 15 minutes. We can take it out and she would be what we call a ‘double bagger.’ She would have a urostomy bag, too. What would you like to do?”

And boy, how do you answer that? I just said, “You know she’s a fighter and she’ll find a way.”

Can’t have sex & intimacy the way a normal person can

[Anne] Waking up in hospital a double bagger, I’m like, wow, you know. They made him change my bags in the hospital. I was like, “No I don’t want him to see them.” And they said, “Nope, he has to know how to change your bags in case there’s some time where you become incapacitated or you’re sick and you can’t do it yourself.” So before I learned how to do it, Chuck learned how to do it.

[Chuck] Dr. Guntupalli has never avoided any conversation. Even the hard sex conversations about, Well now you don’t really have a vagina and are you comfortable talking to me about sex? You know it’s going to be something for the two of you.

You know I didn’t, obviously I fell in love with her. Obviously, I loved the physical side of things but that’s not who I love. You know, I love her, her soul and her spirit. There are still ways to excite each other and still have the same result – the intimacy piece.

[Anne] I am really hopeful that I can help other people maybe be comfortable. I’m learning to become more comfortable with having bags. I felt so bad that here I am a woman with no vagina. I can’t really have sex the way a normal person can, and nor can Chuck.

[Chuck] Early on I don’t think you do know how to handle it or work through it, so you definitely just have to communicate and be strong. I just had to reassure her that our marriage was more than just sex and it was more than her abs that she once had on her stomach and some of the physical things. It just wasn’t..it was just different now.

It hasn’t all been peachy-rosy, but the little spurts of times that we do get I think are appreciated more. You just make more of those moments, you really do.

Anne and Chuck’s story is featured in Dr. Guntupalli’s book Sex and Cancer: Love, Intimacy and Romance After Diagnosis.