a scary story

It was Spring, 2009, and my body was beginning to do things I didn’t much care for, but like most of us tend to do, I chose to ignore it for a while. “It’ll clear up,” I figured. Only three months later, when it hadn’t, I decided it was foolish of me to be avoiding the doctor, after all – I have excellent health insurance.

So in I went, and after a few rather unpleasant tests, and what turned out to be a smooth surgical procedure (one of those nice day-surgery visits) I was on the road to recovery.

What I hadn’t counted on were the biopsy results. Early Stage Endometrial Cancer, is the fancy description they gave me, and while I spent a solid 24 hours in a slight panic, after talking to my doctor the next day I was relieved to hear that they might have already removed it all during the procedure. All I needed to do was return in six months for another biopsy, and if it’s coming back, a nice tidy hysterectomy should take care of things. If it’s not returning, another six month check would be in order, but it was likely I’d dodged a bullet, as it were.

So I relaxed. In the past two years, I’ve had friends and in-laws diagnosed with some pretty terrifying cancers, a few have died, a few are terminal, and just that word – CANCER – was enough to unnerve me.

But then, not even a month later, my sister confessed to feeling a lump in her breast. She’s unemployed, and has no insurance at all, and had been pretending it wasn’t there for three weeks until she finally couldn’t stand the stress any longer.

We decided to remain calm, but we couldn’t ignore this. Our mother had pre-cancerous cysts and a double mastectomy in the early 1980’s and we knew these things could turn serious. So she went to see her doctor, and we paid out of pocket for an exam, then found out that she’d need a mammogram and ultrasound – and they’d “go from there.”

Well there was nothing else we could do, we’d have to get her the tests and pay out of pocket.

So she went in. The two tests would come to $400 and they only needed a $100 initial payment. We knew if there would be a biopsy required, that could run us into the thousands, but after some worried consideration and final resignation, we knew that if the clinic would allow us to make payments, we’d get by.

And sure enough – the tests showed a solid mass that would require a needle biopsy for further evaluation. Her doctor phoned up, and told us that just to see the specialist – just to walk in the door – would run $700. Not including the procedure, or the lab. And if this turned out to be cancer, we were looking at hundreds of thousands of dollars out-of-pocket.

That sent us reeling a bit, I don’t mind admitting. With her on unemployment, I’m the sole bread winner, and while we’re getting by, we’re not exactly as comfortable as we’re used to being. But what could we do?

That’s when her doctor really came through. She told us that thanks to the Susan B. Komen Breast Cancer Society, the mammogram, ultrasound, and biopsy would be covered through the Health Department. Then, if the results required further surgery, she would be referred to Swedish Hospital here in Seattle where everything would be paid for.

The next week was filled with some tension. She had to make an appointment with the Health Department to meet with a Nurse Practitioner and fill out paperwork, in order to qualify for the free care she had to prove she was unemployed and had no source of income beyond unemployment checks.

That done, she was scheduled for a biopsy the following week.

Seeing how nervous she was, and knowing how nervous I’d felt myself, I took to assuring her of all the things this could turn out to be. After all, there are a number of reasons for a woman to find a lump or abnormality in her breast, most of which are NOT cancer. Women can form various cysts, or fibrous tissue, clogged glands, simple infections. There was no reason for us to panic, I told her many times. This was a single lump, very shallow, located just under the skin, and it would turn out to be nothing.

I spent that week convincing her we had nothing to worry about. Then, I used this little scare to finally go in and have my own very first mammogram. My doctor had been urging me to do this for years, and I admit I’d been avoiding having it done simply out of fear that they might find “something” and I’d have to deal with it.

I knew, for years, I wasn’t going to be able to deal with it. So I let ignorance be my bliss. There were no lumps, I told myself, my self-exams were always normal. My yearly physicals were always normal. Nothing to worry about, right?

So out of solidarity, while we awaited my sister’s appointment, I went in for my first mammogram.

I was nervous, I admit. After changing into the gown, the technician took me into this little room, with dim lighting, lovely photos of roses on the walls. There was soft mood music playing, and thick, pretty curtains covering the window, all designed to keep the patient calm and relaxed. The technician was very personable, explaining everything she was doing. I calmed down quite a bit, and we chatted while she took the images. It’s not a pleasant experience, but it’s certainly tolerable for the few seconds it takes.

Afterward, as I sat in the dressing room waiting to hear if the images were good enough, I felt very calm and rather pleased with myself for finally having done it. I knew, in the back of my mind, that breast cancer is more and more a survivable thing. And that early detection, as in all cancers, is the key. I also knew, beyond a shadow of a doubt, that there was nothing wrong with me. After all, I’d just been told a few weeks ago that I had early stage endometrial cancer, so nothing else was going to happen.

One cancer’s enough for anyone, right?

A few minutes later, I was told the images were fine, and that I’d be called the next week if the doctor wanted more images, otherwise I could come back in two years.

Happy, and feeling pleased with my own sense of bravery, I left, and for the rest of that weekend continued to assure my sister that she had nothing to worry about. We figured she’d have her biopsy, find out it was benign, and then relax and enjoy the Fall.

Then I got a phone call.

They wanted me back to have another look at “something” they found on one side. So I made an appointment for the next week, and then went all white.

I remember feeling cold, and scared, and then for a couple of hours my brain just went wild. I began to quickly research what this could mean, and ended up on way too many cancer websites, painting myself a terrifying picture of what the future could hold.

It was easy to ignore the nurse’s words on the phone “This does not mean you have cancer, it could be any number of simple things.” And it was even easier to ignore all the information I was finding that told me, first and foremost, not to panic. But slowly, over the next few hours, it did begin to sink it. I realized I couldn’t very well try to convince my sister she had nothing to worry about if I wasn’t willing to believe that myself.

So I put it aside, as best I could, and eventually the time came for my sister’s biopsy. Our mother came along, nervous as she could be, and I’d already decided I wasn’t going to tell her about my call-back. It was enough to deal with, having her upset over one daughter, there was no sense bothering her with another when it all might well be nothing.

My sister’s biopsy went just fine, and she was given a 3-4 day wait for the results. So we returned to our habit of assuring each other these things were nothing, just benign little growths, and we’d be just fine. But then Wednesday rolled around and it was time for me to go in and get more pictures done.

I was slowly freaking out, I admit, and by the time I was sitting in the dressing room waiting, I was pretty stressed. The technician took two more films, and I sat and waited to hear if that was enough, my mind racing and trying hard to think of the novel I’m writing, or the pendants my sister was making at home, anything but what was going on. Then the technician came in – the doctor wanted two more films – so we did it again, and again I sat waiting.

I soon grew tired of toying with my fingernails, so I found a tie on the gown I was wearing and started to wrap that around a finger, over and over, back and forth, concentrating on nothing at all and everything I could think of. Any second now, she was going to come in and tell me it was all good, they’d finally seen that there was nothing there, and I could go home.

Any second now.

I’d be on my way home.

Then she came in – he wanted two more films, a slightly different angle. The stress was starting to really get to me. Why couldn’t they see what they were looking at? What was taking so long? Was there something there, or not?

I played with the little tie some more, felt a little faint off and on, started to worry a bit. Then she came back in.

“We need to do an ultrasound,” she said. “There’s something there they just can’t get a good look at. But don’t worry, just breathe, try to relax, it’s probably nothing.”

“Probably nothing,” I told myself as I got dressed, then waited for another technician to come take me to the ultrasound room. Once there, it was disrobe again, and let a student come in to watch. Oh joy. At least this time I could see what they were seeing, a little black circle on the ultrasound screen. Just barely under the skin, and completely contained.

A cyst? Well, maybe. Although . . . So the doctor comes in, and he has a look, also not completely sure what he was looking at, although he kept telling me it could just be a cyst or something similar.

“We need to do a needle biopsy,” he says finally, “So we’ll schedule you for next week. Could be a cyst, could be a cancer, but it could be a cyst. Although it might be a cancer, but it could be a cyst. There’s no ductile involvement, so it hasn’t gone anywhere else.”

My head was spinning. It’s like they want you to realize this could be something, but they’re required to reassure you that it could be nothing. I made it home and told my sister, and we both agreed it was best not to tell our mother. After all, it could still be nothing.

Today she got her results.

My sister has breast cancer. She’s at the Health Department as I type this, filling out some paperwork in order to get referred and have the costs picked up by the Department of Social and Health Services.

So how does this scary story end? I don’t know yet. It’s still in the making, so tune in at the end of the month, and I’ll finishing telling the tale. In the meantime, in honor of Cancer Awareness Month – get tested.

Man or woman, get tested. Early detection really IS the key to a cure. Awareness is Knowledge, and Knowledge is Power.