The month after my brother died, my throat began to feel really weird: like my voice had turned sideways and lodged at the base of my neck. In the bathroom mirror, I saw a large round lump on the left side, just above the collarbone. It was about the size of a quail egg.
I saw my doctor, who sent me to the Head and Neck Cancer Clinic at UCSF. To be honest, I hung up the first time I called them because I panicked at the word cancer. The student doctor assigned to perform my thyroid biopsy told me that I wouldn’t need an anesthetic, because as far as he was concerned, that was just one more needle in my neck. So he jabbed a needle into the base of my throat — cautioning me to hold still or else — but the surface of the goiter was thicker than he expected and he couldn’t pierce it. Instead, he wiggled the needle around under my skin for what seemed like a very long time. I held very, very still and tried not to whimper.
I had an amazing bruise the next day. It looked like I’d been throttled. The good news was that the fluid inside my goiter was nothing to worry about. The bruise — and the goiter — went away.
For the next 12 years, the thyroid scans continued . Sometimes I got get away with just an ultrasound. Other times, I had to undergo biopsies. Eventually, the thyroid doctor said that although my thyroid was full of cysts, they seemed to be stable. I didn’t need to come back to see her until things changed.
Last September, they did. I was brushing my teeth one night when I noticed the tendons at the base of my neck were standing out. I’ve gained a bunch of weight this year, so I told myself that was all it was. Besides, my kid has been sick with constant headaches since May and I never knew if she was going to make it to school — or make it through the day. I couldn’t be sure I could keep a doctor’s appointment, if I made one. And 199 Cemeteries was coming out in October and I was about to be busy like I have never been in my life. I didn’t have time to fuss with seeing the Head and Neck Cancer Clinic again.
By November, the swelling in my neck hadn’t gone down. I tried to make an appointment with my doctor, but she wasn’t scheduling appointments. Ever. I don’t know if she left the practice or is off on medical leave or what. So I agreed to see someone else in her practice.
The new doctor blew off my talk of how heavy my legs feel these days and the fact that I’ve tripped over curbs twice because I can’t pick up my feet. I feel weird, I told her. I feel sluggish and cold all the time and my hair is falling out and my skin is really dry and my cholesterol is creeping up even though I’m mostly vegetarian and my heart beat is under 60 bpm and my blood pressure goes down when I have a cup of coffee because the caffeine raises my heart rate.
She blew off the lump in my throat until the end of the visit, when she finally got behind me, put her cool hands around my neck, and felt it.
I felt her jump.
Flustered, she told me to stay in the office and wait to get some blood work done. While I waited for the phlebotomist, the doctor bustled into the lobby to say she thought I ought to have another thyroid ultrasound. I watched the other patients in the lobby take an interest in our public conversation. I agreed to see someone at St. Mary’s, rather than go back to UCSF.
St. Mary’s called that afternoon, ready to make the ultrasound appointment right away. The technician lingered over me, taking picture after picture of my throat. What normally took 15 minutes took 45. I knew what that meant right away.
And then the new primary care doctor didn’t call with the results. Eventually, I called her office and begged a nurse to send them to me. Two months later, no one has discussed them with me yet, but I can read for myself: increased vascularization, calcium formation. A whole lot more cysts than I had in 2014.
Without confirming anything, the primary care doctor directed me to go back to UCSF, since they’d done my original tests. Unfortunately, the thyroid specialist I’d seen there had moved on to Stanford, so I agreed to see someone else.
To my surprise, he hadn’t actually agreed to see me. I arrived in his office 20 minutes early — and it took the whole 20 minutes to get through the line to check in. Ten minutes after my appointment was supposed to begin, a nurse took my blood pressure. Twenty minutes after that, a student doctor took me back for my ultrasound.
Five minutes later, she confirmed that I still have the cysts I had in 2014. She apparently didn’t have the report from St. Mary’s and, like an idiot, I’d forgotten to bring it. I told her they had seen a cyst that was 8 mm. She said that would be as big as both her thumbnails put together. She didn’t see that at all. Rather than look, she hustled out.
An hour and a half after my appointment began, the doctor hurried in. He looked at me: 50ish, overweight, very gray, huddled into my winter coat because I was so cold in the examining room. He’d seen the pictures, he said. My thyroid looks great.
What about the lump? I asked.
We don’t see any lump, he told me.
My doctor could feel it, I argued.
He reached out and poked me in the throat. He didn’t use two hands to feel my thyroid. He didn’t ask me to swallow. He jabbed gently with the ends of his fingers. I’d never had anyone examine me like that before. Seems fine, he said. I’m a surgeon who likes to operate and I don’t see anything to worry about.
And he rushed out.
I sat in the examining room and cried.
That was the week before Christmas. I went home to see my parents for a week. My daughter had a week of vacation after New Year’s, several days of which she spent in bed with a headache. School was supposed to start on January 8, but on the 7th, she came down with some kind of viral infection. She stayed home the whole first week of school.
I could feel my voice twisting in my throat again. I could feel the lump rubbing against the collar of my shirt. I tried not to stare at it when I brushed my teeth at night.
I begged my doctor to tell me what my next steps should be. I have one thyroid scan that reads as precancerous. I have another that says there’s no change since 2014, even though I can still see it. Should I get a third opinion? Instead, she suggested I see an endocrinologist.
That appointment was scheduled for last Tuesday. That morning, the endocrinologist’s office called to say she’d had a family emergency and had jumped on a plane. They didn’t know when she would be back. They rescheduled me for the first week of February, hoping that she would be back by then.
My doctor says not to panic. The levels of thyroid hormone in my blood are still a hair above clinically worrisome, so my thyroid is still working. I can wait until the endocrinologist comes back.
Everyone — except the technician at St. Mary’s — has treated me like I’m overreacting. Maybe I am overreacting. All I know is that of the 7 symptoms for thyroid disease on the internet, I have 6. The level of thyroid hormones in my blood has been dropping for 15 years, but hasn’t yet crossed the magical line into clinically worrisome. My mom is hypothyroid. I have a history of goiter and known cysts in my thyroid. Those are part of my medical records, if anyone cares to look.
I don’t understand why this is such a struggle. I am tired of fighting to get people to listen to me. At this point, I just want to have the stupid swollen thing removed, so I don’t have to worry about it any more.
I didn’t want to like this cause I don’t like what is happening to you, but I wanted to let you know I read it. I really hope you get answers soon. Hugz!
Thank you. I hope so, too.
Like seemed inappropriate but I meant to send sympathy and support – it must be so frustrating for you to not get any answers. sending love.
Thank you. I’m just so tired of dealing with this.
I’m so sorry–and it is so frustrating when communications (and 8 mm reports) don’t get properly conveyed and you are stuck there angry and bewildered. Sending love and anger.