The Work in Between: A Memoir About Stepping Out of My Shadows

Chapter One

In the fall of 1992, during my final year at NYU, I noticed a lump at the base of my throat. It was quite large. About six months before I left for NYU, I remembered a coworker had mentioned that I should consider going to the doctor for my thyroid. She must have noticed the lump there, but I hadn’t seen it. I sure noticed it now. I was having trouble swallowing and was sleeping more than usual. Plus, I was rapidly gaining back weight that I had worked hard to lose. I went to student health to see if they could figure out what was going on with me.

The provider did a brief exam of the tumor at the base of my neck.

I’m not sure what’s going on, he said, but my guess is a goiter. Try adding more salt to your diet. Eat a few of those big New York pretzels. That’s ridiculous, I thought. I felt dismissed and disrespected, like he didn’t take my situation seriously. I wondered if it was because of my weight.

My gut said there was something else going on with my body, so I had to keep searching for an answer. I went to a physician recommended by a friend. I was in the waiting room when she came through the door with her bicycle. That, in and of itself, wasn’t unusual in New York, but it struck me as strange. She also wore a funny hat. I told her that I was having difficulty swallowing. I was gaining a lot of weight. Sleeping more than ever before. My hair was falling out, and my joints were hurting.

She ordered an ultrasound.

Yep, you have something there, alright, she told me in the follow-up visit. But I’m a doctor, and it’s my job to determine if you’re sick or not, and you’re not. We can watch it for six months and see what happens.

I was shocked. Frankly, I was speechless. Even I could see the tumor on the ultrasound. It was huge! I was having a harder and harder time swallowing, I was still piling on weight, and I was exhausted. I was getting scared. Going to school full-time, working part-time, and dealing with being sick was too much. I had to find out what was going on.

Although it took longer than I wanted it to, I finally got in to see a third physician that another friend recommended. He was considered one of the top endocrinologists in New York and specialized in thyroid cancer. At least three months had passed since I first noticed the tumor. I was getting beyond impatient.

Upon examination, he decided to immediately perform a fine-needle biopsy. He was concerned that it could be cancer. He gave me no time to prepare myself; he just left the room and brought back in the longest needle I had ever seen. It looked at least six inches long. He used an ultrasound wand to locate the tumor and then he said, I’m going to inject this needle into your neck. Whatever you do, don’t swallow while it’s in there.

Have you ever tried to not swallow when someone told you not to?

How about when they were sticking a huge needle into your neck?

It was at that moment that I knew it was serious. My instincts are pretty accurate, and I just knew. I slowed my breathing and closed my eyes. He stuck the needle in my neck; I didn’t swallow. I didn’t move. I barely breathed.

He sent the sample off for evaluation. It was inconclusive, but he recommended surgery anyway. By then, it was clearly necessary because I could hardly swallow and was on a practically liquid diet. Plus, it was becoming more difficult to breathe. I was miserable. I was finding it harder and harder to focus on school, I was exhausted all the time, and I hurt. The tumor had to be removed.

I was due to graduate at the end of the spring term. Missing classes just wasn’t an option for me, so I scheduled my surgery during spring break. I knew I wouldn’t have enough time to heal before I had to go back to school, but I was too close to realizing my dream. Even though I’m sure my professors would have understood, I wasn’t taking that chance. I had my surgery a week later. The doctor thought we might learn more once they opened me up, but during the surgery, they still couldn’t figure it out. Once I woke up, I was told that the surgery took longer than expected because they couldn’t decide whether they should take both lobes of my thyroid. They had argued about it. Ultimately, they decided to do a partial thyroidectomy and left the other lobe intact. They removed a sample of the tumor, and it was sent to the pathology lab at Sloan Kettering for a slow grow.

A week later, they removed the drain from my neck. I was back at school the next day. I had to wear a bandage to cover my incision because they hadn’t yet taken out my stitches. It was way too soon, but I returned to school anyway.

As I would find out, there’s a lot of waiting with thyroid cancer.

Six weeks later, late in the evening, I finally got the call.

Ms. Norling, it came back cancer. My nurse will call you tomorrow to make a follow-up appointment. I’m sorry.

Cancer. I had cancer.

I just sat there, stunned. My brain shut down. I couldn’t breathe. I didn’t know what to do. I left work early. A colleague joined me when I stepped into the elevator. I must have had tears in my eyes because he asked me if I was alright.

I have cancer, I told him.

Oh. I’m sorry, he said. I didn’t know what else to say and I doubt he did, either. We rode the elevator in silence the rest of the way.

Afterward, I kept saying the word cancer out loud. Maybe I thought it would have less power over me. I’m not sure. Magical thinking, I suppose. I told everyone about it. I would slip it into conversations where it didn’t belong. I did some of my own research, and I realized that if you’re going to have cancer, it was a very treatable cancer to have.

I had thyroid cancer, technically a papillary-follicular variant of thyroid cancer. As I would be told hundreds of times, If you’re going to get cancer, thyroid cancer is the one to get.

I was grateful that it wasn’t a more aggressive cancer, but it didn’t make it any less stressful or difficult to process.

I followed up with my endocrinologist following the surgery. We talked about Radioactive Iodine Treatment (RAI) which was the normal standard of care.

I had recently gotten married, and we thought maybe we wanted to have children. It seemed risky to do it right then.

I met my first husband in New York at a Chinese restaurant on the Upper West Side. We became friends and as was my pattern, I made an impulsive decision, and we eloped. I called my mom afterward.

Guess what? I got married! I could almost hear crickets in the silence that followed.

Finally, she said in a quiet, hurt voice, I didn’t know you were seeing anyone.

I hate that I hurt her that way. Of course, she would want to be a part of my wedding, and I took that away from her. It was one example of a terrible habit of mine that would take years to learn how to break: I made decisions and let the people who would be most affected find out later. I am not proud of that to this day.

A few months later we went to Midland and Mom and Dad threw us a lovely reception. That helped heal the hurt. A little.

I expressed my concerns about RAI to my doctor, but he didn’t press the importance of the treatment on me and told me I could wait. Honestly, I couldn’t get a straight answer from anyone, my endocrinologist, or my surgeon. As the patient, I ultimately had to make the decision, but without clear communication about my options, it was difficult to make an informed decision. It’s incredibly frustrating.

Overall, my encounters with doctors have never been particularly productive. During one office visit with the doctor who had diagnosed my thyroid cancer, I got upset and started to cry, which was highly unusual for me. I had decisions to make, but I was scared and wasn’t sure what to do. I didn’t understand everything that was happening. I sat there on the exam table with tears rolling down my face, overwhelmed.

He looked at me and said, I can’t help you with that. With that, he walked out of the room.

I felt ashamed that I even brought it up. I was embarrassed and humiliated. Being rejected when I showed vulnerability, especially during a medical visit, destroyed me. It was a huge error in judgment on his part, but that didn’t matter in the moment. It completely destroyed any trust or faith I had in him or physicians in general. But I’m a survivor, and I knew it would be up to me to find my way through this. I dried my tears and got dressed. I met him in his office afterward, as was the routine. There, he showed me pictures of his grandkids and was quite chatty, as though nothing had even happened.

I don’t think the cancer registered as much as it would have had I not been so busy and focused on graduating that year. It had taken me a long time to find my rhythm in college, and nothing was going to stop me now that I could see the finish line.

There were papers to write, tests to take. I had to coordinate my family’s trip for graduation. And all the while, I had to navigate having cancer. Whichever thing was the most emergent, that’s where my attention went. Sometimes it was school, sometimes it was cancer. I couldn’t afford to get derailed, so I just kept putting one foot in front of the other. There were so many things competing for my attention that I couldn’t just focus on how bad I felt or how nervous I was about having cancer.

Many decades later, when I was in my sixties, I realized that chaos had always been my norm. A chaotic environment wasn’t uncomfortable nor foreign to me, which is why I’m not surprised that I did so well during this time in my life and weathered the years of struggles yet to come. Frankly, it was my comfort zone.

I come from a home with heaps of dysfunction and an alcoholic father. Anyone who has experienced addiction in their homes growing up understands the craziness that goes on and how it affects the adults we become. We all have war stories. The names may change, and the intensity varies, but it’s a familiar tale to those who have been through it. Adding insult to injury, I was also obese, often morbidly obese, throughout my life until I was diagnosed with diabetes. That would change everything.

I’ve also had more than my share of blessings. I’ve met some of the most amazing people, had some of the grandest experiences, and loved so deeply—and been so deeply loved—that it almost seems unfair. Maybe that’s part of the reason why I still look forward to the future instead of being pessimistic.

When it came down to it, it wasn’t the chaos or the cancer that crippled me. Not that first diagnosis, nor the second, nor the third. It wasn’t diabetes or morbid obesity.

Bad things happen to all of us, but it seems some of us get more than our fair share of challenges. I don’t know why. I’ve never been prone to asking, Why me? Frankly, my response has pretty much always been, Why not me?

This isn’t because I felt I deserved it, mind you, it was just because I never thought I was any more or less deserving of good or bad things than anyone else. Sometimes, things just happen. So, in a weird way, I never thought any of it was personal. Maybe that’s why I approached my life a little differently.

Growing up, my mom always told me two things:

Bad things happen to everyone. You don’t have to build a mountain to them.

Don’t compare your insides to other people’s outsides.

These adages helped me not to crumble when the world got to be too much. How not to fall victim to events out of my control. As for comparing my insides to other people’s outsides? Well, that one was a little harder. I’m still a work in progress, but I think Mom would be proud of the woman I have become.

Actually, I think she would have been proud anyway.

None of those bad things were my biggest obstacle. What paralyzed me were times when I kept secrets.

I couldn’t carry all the difficult, confusing, sometimes awful, usually embarrassing things that happened in my life on my own. It was too much to carry. It would eat me up inside and make me physically sick to my stomach. So, over time, I learned to talk about it.

I talked about it with old friends and sometimes even new friends and almost always my teachers. It helped me process it, and it made me feel better. It allowed me to keep moving forward and not become paralyzed with fear and uncertainty. Looking back, I think it ended up being my lifesaver. For me, it normalized talking about subjects that many other people kept in the shadows. Admittedly, I didn’t understand the effect that sharing my experiences would have on my life, but what I did know was that I couldn’t carry all the trauma on my own. I don’t believe anyone can. In retrospect, bringing it into the open lessened the power it had over me.

Chapter Two

Growing up in an alcoholic home was hard. It had a huge impact on my development, of course, because so many of our beliefs about ourselves are established as young children. Trying to make sense of my environment through my young eyes was bound to have a negative impact on my sense of self and it did. As an adult, I realized I was constantly searching for attention and acceptance, which led me to make some unhealthy choices. I was also seeking approval, especially from my dad, and that, too, drove some poor decisions.

But I refuse to blame my childhood for every poor decision, every bad experience, or every problem I’ve had as an adult. We all have baggage. All of us. At some point, I had to own my agency in my life, especially as I became aware of my role in it. If I refused to consider that it was my actions, thoughts, or beliefs that got me here, I would stay exactly where I was. Stuck. Sick. A victim. My environment may explain why I didn’t have the awareness or the tools as a young girl, but as I grew into adulthood, I had choices. We always have choices, but first, I had to become aware of them. Then, I had to be willing to own what was mine to heal, grow, and prosper.

I grew up in Midland, Michigan in a lower-middle-class family. I was the middle child with an older brother, Chris, and a younger brother, Eric. Dad and Mom both worked; Dad at the chemical plant and Mom at the local newspaper for most of her career. Dad was an active alcoholic for most of my growing-up years, so our lives tended to be chaotic and uncertain—but there was always love. Lots of love. Even with the addiction and the dysfunction, I knew I was deeply loved and so were my brothers.

I also knew our family was different from my friends’. Our lights were periodically turned off for nonpayment and sometimes we left to go stay with my grandma and aunt until Dad went back into treatment. We had lots of good times, though. There was always music and food and extended family around for holidays, birthdays, and weekend picnics. I had tons of aunts, uncles, and cousins, and I loved being with them. They made me laugh and helped me forget my troubles. It wasn’t an idyllic childhood, but honestly, who has one of those? Everyone has something to deal with growing up, this just happened to be my thing.

Dad’s alcoholism existed for as long as I can remember. He was always drinking too much at parties, when we went camping, and especially on payday. Sometimes, we wouldn’t see him for a week after he got paid. His standard line before he went off on a bender was simply: I’m going out for cigarettes. That’s when we knew that he was going to start drinking—maybe just for a day, but it was often for a week or even longer. It was always calmer when he was gone, and I’d feel guilty for thinking that. I loved my dad. I was Daddy’s girl from the beginning. But when he was gone, there was no stress, no chaos. Mom was more relaxed. We all were, and even though we usually didn’t have enough money, we were a lot happier. We laughed more and slept better.

On the other hand, I worried. All the while he’d be gone, I’d worry about whether he was okay or if he was going to come home drunk or even come home at all. I remember as a very young girl, maybe five or six, beginning to notice an uncomfortable feeling in the pit of my stomach. Not all the time, but it would come up. Mom called them the dreads. The dreads grew the longer Dad was gone. Coming