Friday, March 26, 2010

Part IV - It Ain't Over Yet: The Diagnosis

So I was playing with my kids when I got the next phone call. A nurse said the doctor who performed my LEEP wanted to see me in his office.

"That sounds like really bad news," I said.

"Not necessarily. He just wants to review some treatment options," she told me.

For some strange reason I made the appointment a whole three weeks from then. Whatever it was, I didn't want to get on with it. I didn't want to hear it.

He asked me for about my medical history. Then he asked me how many kids I had.

"I have two," I said.

"How many kids do you want to have?"

"Three," I said, surprising myself by how confidently I answered.

"Well I think you should have that third kid tomorrow," he said. "I want you to have a hysterectomy."

"No," I said.

"Yes," he said, nodding.

"I don't want that," I said.

"I know you don't, Kiddo, but you have cervical cancer."

"You won't die of this," he assured me. "You'll die of something completely unrelated when you're much, much older. This is treatable. We've caught it early. You're lucky. You can still have that third baby. But we will have to remove your uterus."

Then I cried a bit.

"A uterus," he said, "is just a bag in which to hold babies while you are gestating. That's all it is. That's all it does."

He was talking about my womb. He was talking about something at the very center of me. He was talking about my sexual organ.

Then he drew me a few pictures. One explained what CIN III carcinoma-in-situ means. It means that some rogue cells on the top layer of my cervix started spreading into the deeper tissues. But they didn't make it across a certain barrier yet. He drew the barrier with his ball point pen. If those dots were allowed to make it past that line the cancer would proceed to spread into my lymphatic system and throughout my body.

"But we're not going to let that happen," he said.

Then he drew a picture of a uterus and some ovaries and explained how you can take the uterus and the cervix and leave the ovaries behind. They're a separate system.

"You'll still have PMS. You'll still go through menopause. But you won't have periods."

Then he asked me if I had any questions. I did.

"What will be where my uterus was? Just, like, empty space? Just, like, a hole?"

"Everyone asks that," he said. "You've got hundreds of feet of gut that will be happy to fill up that space for you. Next question."

"I can't have a baby right now," I told him. "I just had a baby. He's six months old. How long...?"

"I'm not going to tell you when to have a baby. You'll have to decide that on your own. But do it as soon as you can. Do it in the next three years."

The confusing part to me was whether I had cancer or whether I did have cancer before they removed the cells, before the LEEP.

"This is very difficult to explain to people who aren't familiar with cancer," he told me.

The cancerous cells were gone. They had been removed from my body before I ever knew they were there. I didn't feel them. The flesh they were growing on had been taken away and sent to a lab to be biopsied. Then healthy flesh grew back there. The lab looked at that piece of excised tissue and ascertained that the dysplasia had advanced to the stage of cancer.

The trouble is that once your DNA figures out how to make those cancer cells, once that human papillomavirus attaches itself to your DNA and starts calling some of the shots, once it knows how to grow squamous cells on your cervix, it might succeed at doing the same thing again. It will certainly try. That's what it does.

Then the doctor sent me home to tell my husband.

"Go straight home," he said. "And make another appointment and bring him along with you. We can talk about this as much as you need. You're really lucky though. I know you don't think so right now, but you will. This morning I had to tell a 13 year old girl that she had invasive cervical cancer and that she will die. Yours is non-invasive. It's in-situ. That means it will stay put for a while and we can take care of it for you."

He looked very tired and very sad.

I'd brought my dog Gus along for moral support. He was waiting for me in the car. When I got there he licked all the tears off my face and then fell back asleep.

Then I drove home to tell my husband.

Down the Rabbit Hole: An HPV Story
by Betsy B. Honest


  1. Oh dear!! Oh no!!

    You're writing an excellent story here, by the way. You've got me hooked.

  2. Wow.

    'Enjoying' seems like very much the wrong word, but I am certainly following this with pronounced interest.

    Your doctor sounds - so far, at least - like a very nice man, in what must sometimes be a very difficult job.

    Looking forward to reading more.

  3. Oh no! I was really hoping that this would have a happy ending. Although it sounds like it will, nobody wants to go through something like this. No fun, no fun at all.

    But an excellent reminder on the importance of regular pap smears. I'm so glad they caught it early.

  4. Oh my god. What a horrible experience. You are certainly convincing me to keep going for regular smears, even if they keep coming back borderline and I keep having to go back every six months or so. What a bastard this HPV thing is.

  5. That's the kind of news that's like a punch in the stomach. How difficult it must have been to tell your husband who loves you so much.

  6. Holy cow. Screw the five year wait between paps. I feel like getting checked tomorrow!

  7. I'm with everyone else. Must schedule yucky appointment...

    Poor you, to have that decision to make. I can kind of see why the doctor describes your very womb as "a bag to hold babies," but, And, I know that 13-year-olds die, but oh! Sad, sad.


Tell Betsy...