I don’t think there is one person in the world that is prepared for a cancer diagnosis. Surely, at the age of forty seven I was not. I had been living with a painful, muscle disorder known as fibromyalgia for about fourteen years. I also had developed osteoarthritis at a relatively young age. My basal thumb joints are swollen all the time and very painful. My doctor had been bringing up surgery to correct the more severely deformed joint regularly for the last four years. Surgery is not something I was ready for. I kept thinking if I start replacing things at the age of forty seven how much of me will be me at the age of sixty? Not only that I had gotten used to chronic pain. Going to bed in pain and waking up in pain has become as common as death and taxes to me. It is just always there and I have assimilated it into my life. Not that I wouldn’t like to be rid of it along with death and taxes. If I had a choice I would be painfree. If I had a choice I would keep all of my money rather than pay taxes. If I had a choice I would choose life over death. Not that I thought about death at all. Not my death anyway. People just die around us it seems until it is our turn. Most of us work real hard at not thinking about death. Every advertisement appeals to our fantasy of staying young and evading the inevitable. There are potions and lotions and equipment to keep us looking young and beautiful for as long as possible. Have I bought into that? Maybe just a little. I dye my hair every six weeks to stay blonde. It makes me feel good not to see gray hair when I look in the mirror. For me it was always about being as young as I looked and not as young as I feel because I always feel as though I am trapped in an eighty year olds body.
So, when I started to feel an unusual sense of pressure on the right side of my neck I thought the fibromyalgia was flaring up in that area. The only difference was that it was not pain just pressure. Since it wasn’t painful I didn’t worry too much about it. I assimilated it and added it to my list of symptoms. I noticed at work that by the end of the day my voice would become hoarse on the phone. Also, the right side of my face would get “stupid”. That was my silly term for the uncoordinated feeling of my mouth that would occur at times when speaking and my words would slur. You don’t want to slur your words at work because the boss tends to wonder if you have a problem. Still, it only happened now and then and I could tell when it was coming so I could prepare myself and take extra care to speak slowly on the phone. I went along like that for a few months when I started to have swallowing difficulties. If I talked while I ate I noticed food would kind of fall down my throat and I would choke on it. That used to scare my son more than me because I was in denial that anything else could be going on. It wasn’t until I began to have daily panic attacks that I started a list of symptoms. On one side I had all of the fibromyalgia symptoms on the other side I had all the new symptoms. I didn’t like the looks of the new ones and had convinced myself that I had multiple sclerosis. I made and appointment with my primary at that point.
The diagnosis of thyroid cancer did not come very easily. The first testing that the doctor did was a batch of bloodwork. That is a good place to start no matter what the problem is. Unfortunately, she told me that there was nothing out of the ordinary. I had a normal thyroid stimulating hormone result. I was not hyperthyroid which would have accounted for the racing heart. My blood count was normal. I brought up my concerns about Multiple Sclerosis and she sent me to a neurologist. By now I had begun to experience daily headaches. That doctor ruled out M.S. and said most likely I was suffering from stress. Who doesn’t suffer from stress? At the time I felt like because I was a woman this doctor easily attributed my symptoms to stress rather than look more closely and my primary bought it. What was I to do? I bought it too after awhile because I was so darn tired all the time and the fight was going out of me.
I let another month go by and when one choking episode scared me I again made an appointment with my primary. She looked at me this time and said, “I can tell that you don’t feel well and I am going to try to figure it out”. She ordered a barium swallow and an ultrasound of my neck to determine the cause of my swallowing difficulties. Within a day I was told I had a nodule on the right side of my thyroid gland that showed calcification. The barium swallow showed a slowing of the food content when it passed through into my esophagus. I was referred to an ear. nose and throat doctor right away. Within a week I met with my new doctor and was told that the majority of thyroid nodules are benign. This new doctor ordered a biopsy one on December 21, 2007. I was terrified of having the biopsy. When I went to bed at night I had to turn my head to the left in order to feel comfortable. It wasn’t something I was conscious of at the time. Looking back on it now I realize it relieved the feeling of pressure on the right side. So, laying flat on the exam table I was very uneasy. The doctor numbed me up and then started to drill my neck. That is what it felt like. I was numb on the outside and somewhat numb on the inside but it still felt like a woodpecker was pecking me to death. I kept trying to go places in my mind to escape. The doctor told me to think of a happy place. I kept trying to go to Martha’s Vineyard because I spent many wonderful summers there as a kid. No matter how hard I tried I always ended up replacing Tippi Hendrin in a scene from “The Birds”. After the first drilling the doctor asked if I had an ultrasound done beforehand. When I answered in the affirmative he asked who ordered it. When I told him he excused himself to make a phone call. At that point the only place my mind would go was, “most nodules are benign”. I chanted it in my head like a mantra. He returned and said he would like to take another sample. This time I kept my eyes open and I watched the computer monitor. The colors were beautiful. There was so much red and blue and if I hadn’t been so freaked out I think I would have been in awe of doppler technology. Finally, it was over and he wished me a wonderful holiday. I sat up and wanted to spring off the table. He put his hand on my shoulder and pushed down. “Stay here awhile because I had to work very close to your carotid artery and you may be a little dizzy if you get up too soon”.
Christmas was a blur. My neck hurt from the drilling. My fingers cyber danced across the keyboard until I found a picture of what a cancerous nodule looked like with doppler imaging. It looks red. Cancerous lesions need a blood supply. I left my throne and abdicated as the queen of denial. I knew what I felt like. At that time I hung on the second statement that the E.N.T. said during our first meeting. “Even if this is cancer, it is the best cancer to have and the most treatable”. Now, I focused not so much on cancer as the worst present ever at Christmas but the gift was that it was treatable. Always a silver lining.
Not long after the Christmas tree was packed up I found myself sitting on an exam table waiting anxiously for the results of the biopsy. In rushes my E.N.T, who is so tiny by the way that she could have been mistaken for an elf if her ears were pointed and she abruptly announced, “well, it is something that we have to take out”. She continued on quickly because my husband and I both started talking at once. She said the biopsy was abnormal but not conclusive and the only way to know if it was cancer was to take it out. It was explained to me that while I was under anesthesia the nodule would be sent to pathology and if it was cancer she would take out the whole gland. I was scheduled for surgery on January 21, 2008. At this point however ridiculus it sounds I prayed for the best one. Papillary is the most treatable form of thyroid cancer. I researched all the deadly ones. Follicular wasn’t so bad but it was a little more aggressive than Papillary. Then there was Papillar Follicular variant which is a combo deal. As if the cells can’t make up their mind and are vying for top billing. Medullary carcinoma is the most worrisome. It occurs often with cancers of other endocrine glands such as pituitary and adrenal. This is part of grouping of cancers that are very dangerous. Ofcourse, that’s what I obsessed on.
Finally, on January 21st I had my surgery. The nodule proved to be cancerous but at the time my thyroid was removed the doctor could not tell my husband what kind it was yet. I woke up in the recovery room and was surprised by how little discomfort I actually felt. My husband and my son had to wait to see me until I was taken to my room. The wait was not too long. They were actually following my gurney to my room and it seemed like it took forever to get into my bed. The nurse had so many questions about my medications and was taking a history and entering it into a laptop. I was still so medicated but I remember my husband and son were standing with their back up against the wall at the foot of my bed. This weird thought came to mind. “They look like they are waiting for a firing squad”. “Why do they look so tired I’m the one that had surgery”? After what seemed like an eternity we were left alone. My husband grabbed my hand and his eyes filled up with tears. He said that it was cancer and the whole thyroid was out and we don’t know what kind it is yet. “Well, when will we know??” I asked. He said that we would know the next day. I found out later that when the doctor had left the operating room to speak to my family she saw my son through the window. He was outside smoking a cigarette. When he came in she lit into him and firmly stated, “the kind of cancer your mother has is not her fault but the kind that will kill you will be”! Last year he quit.
At last I found out that my cancer was papillary carcinoma. I was released the next day after my calcium levels were good. When your thyroid gland is removed the four parathyroid glands that we all have are sometimes injured or in shock. These tiny glands control your calcium level. If calcium is too low a person gets weak and tingly and the heart doesn’t beat right. I lost one parathyroid. Everyone who has this operation has to take calcium for the rest of their lives. Not a big deal if you do it.
The treatment for papillary cancer is radioactive iodine. Thyroid tissue is the only tissue in the human body that sucks up iodine. The doctors use this to our advantage by adding radioactive material to the iodine and it get’s sucked up through a metal juice box. I like to keep it simple in my description but in reality it is a very serious matter. The radioactive material is handled by special radiation officers for safety. I was escorted out of the hospital by two officers. They made sure I was not walking withing six feet of anyone. It was the only time I had a glimpse of what it must be like to be famous. No one but me and my officers were allowed in the elevator and my husband had to use the valet parking. I was picked up at the door and the officers opened the car door for me. They took their job very seriously. I was radioactive and a danger to others. Especially a pregnant woman, children or people with compromised immune systems. In a hospital setting those are the people you run into. Before the treatment I had to be completely hypothyroid and follow a low iodine diet. This gets whatever thyroid tissue is left behind ready to recieve the iodine. I had this treatment on May 21, 2008. I stayed secluded in an upstairs bedroom for five days. The seasickness hit about six hours later. That is what it felt like. For some reason my hands swelled up and my husband had to cut off my wedding band. Becoming hypothyroid is like entering into instant depression. Add to that the isolation of having to be in a room alone when you could really use a hug is very difficult. It is one of the loneliest experiences of my life. When the wedding band got cut off I went to pieces.
The rest of that spring and summer I healed up. My energy level came back very slowly as my thyroid hormone was reintroduced. In the fall I had to go back to the hospital for some follow up bloodwork and scans. I was happy to have the treatment behind me and looking forward to getting a clean bill of health. The bloodwork showed a high thyroglobulin level. The thyroglobulin is high if there is remaining cancer cells even if they are microscopic. The scan showed abnormal lymph nodes in my neck. The cancer that came with the “best” and “most treatable” tags proved to be stubborn. For whatever reason it became aggressive and it was concluded that I had had it for a while.
On October 21, 2008 I had a second surgery on my mothers birthday. I was told this was good luck by a nurse. At this point I was skeptical. Thirty eight lymph nodes were removed along the carotid artery and a few from the mid section. This surgery proved to be more difficult to bounce back from. There was more pain due to nerves being cut and basically more digging around. I went home and followed the “do nothing for ten days” advice and still I developed a seroma. A seroma is a large collection of serous fluid that had accumulated. I was swollen from collar bone to jaw bone. I looked like “Jaba The Hut”. The doctor had me return to the hospital and the fluid was drained. Every two days I had to go back and have it drained again as it would accumulate over and over again. Wearing a pressure dressing around my neck was probably the most uncomfortable part of that. The draining procedure was painless. It is like popping a blister.
I don’t know why the number twenty one came up four times so far. It has on all of my procedures and it is just something that caught my attention. I am not a superstitious person so it doesn’t mean that much. I was told after my second surgery that my body has made antibodies to the thyroglobulin and that means we can no longer trust the blood test. My future tests have to be ultrasounds or CT scans. I have a CT scan coming up in the fall. I do not know yet what the date is. It would be funny if it was the twenty first. I do have something rather remarkable that has happened to me. Before my first surgery my E.N.T. doctor had a procedure done that involved numbing my throat and putting a scope down there to look at my vocal chords. She said she wanted to leave them the way she found them. The right vocal chord was found to be paralyzed. That would explain the hoarseness and the choking. During the second surgery the surgeon stimulated the chord with an electric pulse to try to revive it. I was told that after six months of a nerve being paralyzed it doesn’t come back. My doctor said he would try it anyway because he doesn’t believe in never but that he did believe it was highly unlikely. After more than ten months of my vocal chord being paralyzed upon examination the doctor discovered that it was very much functional. How do you like that? The best cancer to treat has been anything but for me and a nerve that should still be paralyzed isn’t. What does the future hold? I don’t know and no one ever does. Do I worry constantly like I used to about what the next test will reveal? No.
Today, I enjoy my two little grandkids. I have a bigger and shinier new wedding band. What mattered to me before cancer is not what matters to me now. I give and get lot’s of hugs everyday because I remember when I couldn’t. Although it was recommended by my doctor,I have not spent sixty dollars on that special scar cream. I don’t care that I have a five inch scar on my neck. It is not something that I have to hide. It’s okay for people to ask me about it. It gives me an opportunity to tell people to enjoy today. I do however still dye my hair blonde. Some old habits a girl just can’t give up. Besides I remember hearing when I was a little girl that blondes have more fun.
