I don’t have a thyroid. When I was born, I had one, but in 2002 some guy surgically removed it because:
It was the size of a grapefruit.
I couldn’t breathe.
And oh, I had cancer.
In about 2.5 more years if it doesn’t reoccur I can answer “no” on the cancer question for medical insurance. For right now, I can’t get medical insurance unless it is through an employer group policy.
I have had very very VERY bad luck with doctors ever since I moved to California. That is a whole other completely traumatic story that I won’t bother going into at this time, but it has to do with the dark times. Things went very wrong soon after moving here, and a large part of it was directly caused by the doctors I was dealing with. I developed a serious distrust and dislike for doctors and I still try to avoid them. The only one I found the entire time I have lived in California that I actually liked, moved out of the state. It is made all the more unfortunate because, with this whole thyroid thing, I am now forced to see a doctor minimum once a year, or I can’t get the meds I need to stay alive. I should see them more often, but that is easier said than done.
By 2001, which was a few years post dark time, we never saw doctors unless we were concerned a part might fall off or that we might die. Neither of those concerns happened often, so we mainly just didn’t go.
In 1999 we had been forced to switch to a new insurance provider when the company downsized and limited benefits. The new insurance provider assigned us to a primary care physician. We never went. Then one day in 2001 we were getting out of the car and my daughter shut the door on her finger. The door CLOSED. I had to reopen it to free her. Her finger did not look good. This was one of those times where I was concerned that a part might fall off. I called the family practitioner we were assigned to, the one who had been getting monthly payments from the insurance company for each of us. I wanted to get her an appointment. They refused to see her, because they “Don’t see patients her age.” I called to yell at the insurance company and they randomly switched us to another doctor (effective the following month).
In the fall of 2001 I was feeling generally rundown and having lots of mini-illnesses. I just was not normal. Then I came down with a horrible respiratory infection, along with a really bad sore throat and all of my glands swelled up. I was puffy. I was horribly stiff. I felt like I couldn’t breathe or swallow. Eventually the swelling from my lymph nodes went away. At which point it became extremely noticeable that my thyroid (which had been enlarged for many years and I’d been through many discussions with doctors about it) had gotten much more enlarged. It was ridiculously large. It was not something one needed to feel, it was visible. There was an alien lump growing in my neck. The alien that didn’t want to let me breathe was starting to seem like an “I might die” situation, so I went to see this random doctor that our insurance provider had selected. She was condescending. She wanted to put me on antibiotics even though she could not name a part that she felt there was a bacterial infection of (I was already done with the respiratory thing, I just had the strangling alien). She drew blood to run some tests. She was sure she knew what it was though. “It is obvious.” She told me. She sent me on my way and told me they would contact me with the test results, and get things fixed.
I called multiple times and finally, more than a month later, somebody called me back to tell me that the reason they never called was because the test results were all normal, and I was fine. I told them that I was not fine, and they needed to refer me to a specialist. They repeated that they had performed the blood tests and it showed everything was normal. I was fine. I had nothing to worry about. I continued to contradict them and kept explaining that I was obviously NOT FINE. They eventually got me off the phone by saying that they would submit the request for a specialist for insurance approval.
In the meantime the end of the year was approaching and we had elected to switch insurance during the last open enrollment period because I was suspecting that this would go poorly. The first doctor never did get back to me, but in January, with the new insurance rules, I self-referred to a specialist. I went in with all my notes and papers because there had been suspicious things about my thyroid for over a decade, but there were always other medical things that were more pressing to deal with, so doctors would put it off to look at more closely later. I told him my story, and he kept shaking his head and asking me to clarify things about the most recent doctor. He couldn’t believe that she had tried to run tests themselves instead of referring me to a specialist immediately. My thyroid at this point was so enlarged that it was interfering significantly with my breathing and swallowing. It was physical uncomfortable. Shirts had to be loose, necklaces were not an option. My neck felt claustrophobic and I walked around always feeling like I was right on the verge of a complete panic attack.
He sent me in for an ultrasound, which was inconclusive. We discussed my options and eventually decided that I should just have it removed, that going in to do a biopsy first did not make sense. Sure we might find out it was cancer, but we could find out after it was removed too. It wasn’t going to get any smaller, and I was having trouble breathing.
He referred me to a surgeon. I called to make an appointment and they wouldn’t see me for TWO MONTHS for the consultation. I tried to explain how bad I was feeling but they told me it was the first available appointment. I asked repeatedly to be called if there were cancellations and I called the specialist back to ask them to nudge the surgeons office. Two months passed with me feeling worse each day. On the day before my scheduled consultation, the surgeon’s office called to tell me that they had to cancel. They did not know when the doctor would be available to see me again, so they suggested I find a different surgeon. They didn’t even apologize.
I called the specialist back and he gave me another surgeon’s name, but that surgeon wasn’t on my insurance. My specialist did not know of another surgeon that he felt he could personally recommend. I was on my own for finding a surgeon. Don’t forget I am ill, having panic attacks because I cannot breathe properly, and I have a serious distrust of doctors. Life was fun.
Honestly, I got horribly depressed and did nothing for a while. In the meantime we were out for Chinese food and I got a fortune cookie that said “Any arrangements you make are likely to be your final.” I felt horrible. I wasn’t getting enough sleep, because I was never comfortable. I wasn’t getting my work done. I was miserable and felt hopeless.
Finally when support wasn’t working, my husband and my mother moved on to harassment and bribes. I eventually managed to find three surgeons who specialized in the kind of surgery I needed and were covered by my insurance. One I ruled out because he was in his 70s, and while it was impressive that he was still operating, I decided that I didn’t want him to operate on me. Of the other two, one was actually willing to see me within 2 weeks. We went for a consultation and didn’t hate him, so we scheduled the surgery. He looked like Stanley Tucci. More like a Murder One Stanley Tucci than A Midsummer Night’s Dream Stanley Tucci, which is too bad, because Puck, The Surgeon would have been a lot more entertaining.
The surgery went well enough. Being in the hospital is horrible, but there are definitely worse hospitals to be stuck in than Cedars. Stanley Tucci removed my gigantic thyroid. My pathology report was the single most disgusting thing I have ever read. The results of which were that they found cancer. The malignancy was encapsulated in other disgustingly described abnormal tissue. It had not spread.
After a lot of discussion we decided against doing radiation treatment. We are able to monitor the growth of any new thyroid tissue (which might indicate a return of the cancer) through blood tests. I have to take (right now 3) pills everyday to make up for the missing thyroid. However it doesn’t just stay the same forever. Over time my levels change and I have go have blood tests and change my meds. Symptoms when things are going wrong one way or another, include depression, memory loss, hair loss (head and eyebrows), inability to handle stress, inability to focus, exhaustion, heart palpitations, being too cold, being too hot, having insomnia, having high blood pressure, having elevated cholesterol, getting muscle cramps. Of course all of these symptoms can be from other things too. It gets aggravating.
When it comes down to it, I had cancer. It is something I think about often, even though I don’t talk about it that much. My body was making new cells to replace old cells, like it usually does, and as happens now and then, it created a mistake. Then instead of realizing it and getting rid of it, my body just decided it would make more. The cells nearby harbored it and kept it safe. I didn’t catch a disease from somebody. I didn’t have an accident. My body just decided to play a very nasty, very personal, joke on ME. “If you have to get cancer, thyroid cancer is the best kind to get.” You have no idea how many people, especially doctors, have said that to me. Fuck you, and the horse you rode in on. That doesn’t make me feel any better. I get it. I’m lucky. It could be worse. Things usually can be.
The thing is, I know now that my body can make cancer, and that isn’t something I seem to be able to just forget about. What if next time the cells that mutiny aren’t in “one of the best places to get cancer”? I’m not talking about science, or statistics. I am talking about how I feel.
In August of 2005 I started having a lot of unpleasant symptoms. I felt horrible. I was tired, depressed and having seriously horrific leg cramps in one leg. It was bad. The muscles would cramp and lock up so my foot and leg were deformed and it wouldn’t let go and I’d be screaming in pain. In a pretty short stretch of time I developed a very large mass in my thigh. I called my thyroid guy, because he was the only doctor I had spoken to in years, and he told me I really needed to have it looked at, sooner rather than later. I was afraid he was going to say that.
He set me up with a guy in his building and that guy spent about 2 minutes with me before telling me he thought I should have it removed. Soon. A couple days soon.
So, I did. It was big. Five inches diameter. Yuck. Turned out to be benign. I still have some numbness from the pressure it was putting on a nerve. I also have, yet another, fancy scar.
So yeah, the fact I had cancer, it sticks with me. It runs through my brain every now and then.
Main Entry: canïcer
Etymology: Middle English, from Latin (genitive Cancri), literally, crab; akin to Greek karkinos crab, cancer
1 capitalized a : a northern zodiacal constellation between Gemini and Leo b (1) : the 4th sign of the zodiac in astrology — see ZODIAC table (2) : one born under the sign of Cancer
2 [Latin, crab, cancer] a : a malignant tumor of potentially unlimited growth that expands locally by invasion and systemically by metastasis b : an abnormal bodily state marked by such tumors
3 : something evil or malignant that spreads destructively
4 a : an enlarged tumorlike plant growth (as that of crown gall) b : a plant disease marked by such growths
– canïcerïous /’kan(t)s-r&s, ‘kan(t)-s&-/ adjective
– canïcerïousïly adverb