Misdiagnosed... How I Survived The Cancer I Never Had

Misdiagnosed:

How I Survived The Cancer I Never Had

By Michelle Kachurak

Published at Smashwords

© Michelle Kachurak & Ben Falk 2014

For

Connie Vrobel, Father Joseph Streit

and Brandon Senk

Choriocarcinoma

There’s a lot of reference to choriocarcinoma in this book, so rather than introduce it later and have everyone get confused, I thought it would be easier to just explain what it is now.

It’s uncommon as far as cancers go, but if caught early and treated properly, it’s very often curable. According to the National Library of Medicine, it’s a quick-growing form of cancer that occurs in the woman’s uterus. The abnormal cells start in the tissue that would normally become the placenta, which is the organ which grows when a woman is pregnant in order to feed the fetus. The disease often occurs with that’s called a complete hydatidiform mole, also called a molar pregnancy (this is what the doctors thought I had initially). The cancer can also occur after a miscarriage, or ectopic pregnancy. It’s one of the family of results that can result from gestational trophoblastic disease (GTD). Symptoms include elevated hCG levels (the hormone which kicks in when you’re pregnant) and there may be vaginal bleeding and pain.

Look, I know this all sounds very complicated. And the reality is, you don’t necessarily need to understand every word here to get what I go through in the book. But I thought it was important to tell you before we begin, just so you can go away and do your own research if you felt like you wanted to. I’ll come back to some of it as we go on.

Oh – and SPOILER ALERT! I didn’t have it…

Introduction

There were a lot of tears during the writing of this book. There weren’t supposed to be. I’m not much of a crier and I thought I’d got the telling of this story down pat. It’s been 13 years since I was misdiagnosed with cancer and in that time, a lot of people have asked me what happened. I went through a court case, during which I had to tell everyone everything. But I never really told the whole truth, what I felt in my heart. Not really. Not until now.

Sure, my family knows a lot of what went on. My mom and my sister were there for lots of it. My best friend and sister-in-arms Stacey helped me and my kids through it. My girls Brittany and Terilynne, who were young then, just nine and seven, saw stuff I never wanted them to see in a million years. Even they don’t know the full story. My husband Bink, when we stand out on the beach and cast our lines out into the ocean, sometimes we talk about it a little. By the time you’ve finished reading this book, you’ll know more than he does. As for the rest of my neighbors on this beautiful island in North Carolina, forget about it. They don’t know who Michelle Kachurak is, where I come from, my medical history, or why I like to keep myself to myself.

I’m a fact-teller. I like dealing in straightforward points. When this happened, what was done, by whom. It’s taken me 13 years to realize that’s not enough. Unfortunately, that means crying. Lots of it. But it also means incredible memories, thoughts about people fundamental to me which had never really risen to the surface before I started writing this all down. It’s reminded me of horrifying moments when I thought I was going to die. But above all, it’s resurrected some ghosts from the past who deserve to be brought back to life. Not literally, of course, cancer isn’t that kind. But people who crossed my path that I never would have met had I not been diagnosed as I was. I’ve enjoyed spending time with them again – thinking about the laughs we had, the anecdotes we shared, the promises we made together. I hated everything I went through, but I’d do it all again to meet them. If nothing else, they are who this book is for.

So yeah, those facts. Those inescapable, awful facts which I’ve tried to outrun all this time. I’ve learned you can’t really get away from them. They cling to you like the cocktail sauce coats the shrimp my mom and sister brought me that horrible New Year’s Eve in hospital. Writing this book, I realized facts aren’t enough. I’ve hidden the way I really feel about my experience for too long. It’s turned me into a completely different woman. Before I was diagnosed, I didn’t fear anything. I had a healthy respect for fear, sure, but I didn’t let it stop me doing anything. That’s not true anymore. And part of that is because I’ve kept those feelings buried deep, deep down. I loved rollercoasters, now I can’t go on them. For a long time, I was afraid to drive on the highway. I won’t go out on a boat – and I live by the ocean!

That’s why I’m writing this book. I hope it will help me heal. I know that by telling the story of how I came to be misdiagnosed with choriocarcinoma cancer and how I went through nine months of excruciating chemotherapy, I’m opening up a can of worms. But maybe, just maybe they’ll eventually crawl away and I can get past it. I also want to tell you about the amazing people I met on my journey (they always call cancer a journey), people like Father Streit, my cousin Brandon and Connie. And I know there are people out there who have gone through what I did, or perhaps think they are going through it right now. If I can help one of them, it’ll have been worth it. The words and incidents presented in this book are as I remember them, so apologies if I mix up some of the order. But this is how I recall the conversations I had with everyone I met and I’ve done my very best to be accurate. As to the medical data and explanations contained here, I did a lot of research during my treatment but I’m not medically-trained (a fact I got told often by my doctors). I apologize for any errors in that regard.

So this is my story. Tears and all. But I guess we should start at the beginning…

CHAPTER 1

I was born in Wilkes-Barre, Pennsylvania in 1970. It’s a pretty big city, the 13th largest in Penn, named after John Wilkes and Isaac Barré, two British members of Parliament. It’s a big mining town – its nickname is The Diamond City due to the 19th century discovery of anthracite coal – and a bunch of famous companies set up bases here, including Planter’s Peanuts and HBO. Amazingly, I recently remembered that I was actually born in the same hospital where I was treated for my phantom cancer. We lived at the time in a nearby town called Plymouth. You might think my family was in the region because Dad was a miner, or in manufacturing, but you’d be wrong. My father Joe was a psychiatric nurse and actually worked at the same state hospital for his whole career. This wasn’t some place for the criminally insane or anything, it was for regular people with mental disabilities. In fact, I remember him bringing home patients sometimes, patients who were allowed out of the hospital but didn’t have anywhere to go, especially around the holidays. I remember coming downstairs one time around Thanksgiving when I was about ten and seeing an old woman I didn’t recognize sitting on our couch.

‘Who’s that?’ I asked.

‘This is Carol,’ said my dad.

‘But who is she?’

‘She’s going to have Thanksgiving dinner with us,’ said my mom.

‘Why?’ I said. ‘She’s not part of our family.’

‘She’s got what they call a furlough,’ said Dad. ‘And she needs be around nice people.’

It wasn’t the only time that happened. Dad was a very, very good nurse. He didn’t take me to work much. To be honest, it wasn’t really the kind of place where you spent Take Your Daughter to Work Day. Even though it was just a hospital, it was full of locked gates and thin hallways, bit like a prison. Creepy. We went a couple of times to pick up his pay check and I’d sit at the nurse’s station while he sorted his business. It’s not surprising he’d want to get people out of there. Later on, when I spent so much time in the cancer ward, all I could think about was being at home, on a couch, eating home-cooked food being around people who weren’t sick. It’s funny, because you might think that with a nurse for a father, I would be able to see beneath the surface of hospitals, feel more comfortable in them. Understand the people who work in them. I wish that were the case, but actually hospitals were always alien to me. That might be why he didn’t spend all that much time in the hospital either when I was there. He was an interesting character, my dad. Not the warm and fuzzy kind, but incredibly hard-working and while his love may not have been as obvious as, say, my mom’s, I know he did love us. I never had the closest relationship with him, but having thought about it a lot, I understand he just showed us how he felt in a different way. So I’d always go with him to pick out the Christmas tree when I was a kid. We’d curl up in bed and watch his favorite TV shows. One time, there was a song I’d been hearing on the radio and I was desperate to own it because I’d just got a new record player. He actually kept me out of school and we went to the mall to get it. Our family always had plenty of clothes, plenty of food, but I think that emotionally he found it tough to let us in sometimes. But that doesn’t mean he didn’t love us in his own way. When I got sick, he didn’t like to talk about cancer or the chemo. He wasn’t by my side every day. But he must have been terrified. I was his little girl. Different people react different ways to things, I guess. He never let us in about how he was feeling, but I know he was scared for me. Perhaps it was because he worked in a hospital all his life. He knew what could happen there and was frightened it would be his youngest kid who suffered.

We didn’t actually stay long in Plymouth. When I was two, my dad moved us, that’s my mom, me and my then-eight-year-old sister Trish and older brother Joe, who was six, to a small town called Harvey’s Lake, not far away. That’s where I grew up. The lake is the largest by volume in Pennsylvania and was the reason people from New Jersey and New York headed there in the summer. It was rural and full of holiday cottages, the kind of place where more affluent people had second homes at which they spent July and August. Back in the Forties and Fifties, there were dancehalls and it was a popular tourist destination. There was an amusement park, which was very popular. The train goes through it and it was beautiful, full of trees and water. We were one of the few families who lived there all year round. Loads of people came for the season, then left. It was fine by us, we had the run of the place. At the time, there were only about three or four winter families. It was like being at that resort in Dirty Dancing when no-one else was there.

It’s where I built up my fearlessness, the sense of abandon that I felt the loss of so keenly all those years later after my treatment. It was one of those Stand By Me-type existences, all outside. In the winter, it snowed and we’d rush up to the top of the hills and go sleigh-riding. When I was growing up, my mom Pat worked as a supervisor in a shoe factory and that meant she got to take home some of the extra leather they had lying around the plant.

‘Here you go, Michelle,’ she told me once, handing me a leather book bag.

She had made it herself from the cast-off pieces. She also gave me one to give to Stacey, my best friend. We used them for school, sure, but mostly we liked riding on them as we slid down the hills in the snow. The Cromans, Stacey’s parents, were another year-round family and we were inseparable. Our mothers met first and we got introduced when we were only two-years-old. Forty years on and she’s still my best friend. In fact, she’s like my sister in every way apart from biologically. She plays a big part in this story, but we’ll get onto that later. We always played at her house as kids, as well as outside in the woods. We’d wake up in the morning and go climb trees, swing on grapevines, or dig holes. There were caves which we’d explore and there were small areas where it was possible to fish. I learned to fish from an early age and it’s something I still love to do now with my husband. Every Monday we take our truck to the shore and just spend the day casting our lines into the ocean and seeing if we get a bite. I don’t even care if we catch anything, it’s the calm of it I like. Reminds me of being a kid. Back in those days, everyone was trusting and there were lots of summer cottages that we could roam in. They were ours for the picking. We didn’t steal or damage anything, but we would pretend we lived there as roommates, imagine our grown-up lives together.

We used to jump off the school bus together and just go straight over to her place. We were in kindergarten and there was a cottage next to her house that no-one ever seemed to live in, in the summer or the winter. In the yard were two oak trees and the owners had tied up a red wooden swing between them. We used to play almost every day on the red swing because it was big enough that we could both fit on it. One day we were playing when I decided that I was going to go home.

‘No, you’re not,’ Stacey said, her mouth quivering a little.

‘I got to get home, my mom wants me to do some chores,’ I told her.

‘No!’ she said, getting mad.

She looked down next to the swing and saw my red Tupperware lunch box. She grabbed it.

‘If you go home, I’m going to burn your lunch box,’ she said.

‘No, you’re not, give it back,’ I asked.

‘No.’

Her voice was getting louder.

‘Give it back!’ I said.

I thought I saw a flicker of a smile on her face.

‘No,’ she said – and started running.

Before I knew what was happening, she was twenty yards away, heading back down the hill to her house. As she went, I could hear her screaming, her voice echoing while she ran.

‘If you go home I’m going to burn your lunch box!’

I set off after her, fearing the worst. Stacey was someone who followed through on stuff. My lunch box was going to end up in the wood burner for sure.

‘Stace! Wait!’ I cried as I followed, desperately trying to gain ground as we careened down the hill.

She burst through the door of her house and I arrived a few seconds after, still shouting at her not to burn anything. I saw her standing, panting, in the kitchen, holding the Tupperware. She smiled.

‘See,’ she said, between gulps of air, ‘I knew you would stay and play.’

To this day, if either of us mention the red swing or the words lunch box, it immediately throws