I’ve always tried to do everything in my power necessary to live a long, disease-free, happy life. I maintained an ideal body weight via diet and exercise, did not smoke, and only drank alcohol occasionally. Although I dreaded needles and the mere thought of doctors, I visited my general practitioner on a regular basis; I realized physical examinations were necessary for my well-being. Yes, I was a big chicken, but forced myself to go, anyway. I graduated college in 1989 and found employment in the health care industry. I rented a studio apartment; to me, it was a palace. Life seemed full of promise and I was ready to take on the world.
One day in March, 1990, I came home from work and jumped onto my bed to watch television. I was lying on my stomach, with my hands supporting my head. As I placed my right hand on the front right side of my neck, I felt a lump. I checked the left side. No lump. After touching the right side again, and rubbing the hard, round, lump, my thought was: Oh my God, I’ve got cancer! It was after the doctor’s office hours, so I called the following day and made an immediate appointment.
After examining my neck, and feeling the lump, my general practitioner believed I most likely had an infection in my body. He prescribed medication and sent me on my way. Ten days later, the lump was still there. I was given a different prescription. When that didn’t do the trick, I was assured not to worry. I was thin, and the lump was simply a more prominent lymph node in my neck. I did not have cancer, hooray! Or so I thought.
When I turned my head to the left, the lump was slightly visible. Therefore, I learned to wear my long hair in front of my neck, to conceal the embarrassment. I thought of the lump as a gumball residing in my neck. On routine visits with my general practitioner and gynecologist, my neck was usually examined as protocol. Nothing was ever said about the prominent node.
I gave birth to a healthy baby girl in 1996. In 2000, I began writing weekly columns for a newly established on-line syndicate. My column, Lisa’s Lair, went on to be published by an on-line daily newspaper. I was in excellent physical shape and exercising regularly. I swam during the summer months and was walking eight miles per day, six days per week, all year round. I looked great and felt great.
My annual physical exam was scheduled for January 2003. Blood test results were within range, except for high cholesterol; the total number was 289. I wasn’t surprised, as this had been a problem for several years. The physician’s assistant, performing the examination, began feeling my neck and concentrated on the prominent node.
Asked if I ever had a sonogram, I became annoyed and said, “I’ve had this lump for almost 13 years. Now, it’s an issue?”
Yes, it was an issue, and I was sent for testing. I was given a referral for a sonogram, just to be on the safe side. No big deal, I experienced sonograms during my pregnancy. I had it done, and figured the ordeal was over. Wrong. I was then told, after the results were reviewed, that I’d require a CT scan with contrast. This meant that I needed to have a dye intravenously placed into my body for the scan. After this procedure, I figured the situation was finally over with. Wrong again.
My next referral was to see an Ears, Nose, and Throat specialist. Again, just to be on the safe side. He felt my neck, while I was drinking a cup of water. Then, the bomb was dropped: I needed to have a needle biopsy!
“But aren’t biopsies to check for cancer?” I replied, in a state of confusion.
The doctor wanted to rule out any possibility and told me not to worry. By this time, I was worried. As he inserted the needle into my lump, I squirmed a bit. He asked me what was wrong. Was he kidding? How would he have liked a needle jabbed into his neck? It wasn’t actually painful, just uncomfortable.
Also scheduled, was a biopsy of the actual thyroid. I made it through the procedure without shedding a tear. Remember, I was the lady who was petrified of needles several months earlier!
To my joy, the result of the thyroid gland biopsy was negative! I figured I didn’t have cancer after all and the entire nightmare was over! Halleluyah!
WRONG.
The specialist informed me that he believed the thyroid gland biopsy happened to collect normal cells. We’d have to wait for the lymph node biopsy to come back; something had caused that lump.
One day, after what felt like forever, the phone rang; it was the specialist calling. He told me the biopsy came back as suspicious.
I said, “But it’s not cancer?”
He replied that it appeared to be, and surgery was scheduled in two weeks. I completely flipped out upon hanging up the phone. I had cancer!
How could this be? I felt as though I were watching a movie about someone else’s life. Horrific news wasn’t supposed to be thrust onto me. I did everything I was supposed to do. I was a law-abiding, kind, person. I followed doctors’ advice and did the best I could as far as paving the way for a healthy life. Why was I being punished? I recall how unfair I thought life was. There were people I knew over the course of time who were mean-spirited, underhanded, and abused their bodies terribly. Yet, I was the one with cancer. Why me?
In a situation as mine, loved ones didn’t know what to say. I got pretty sick and tired of hearing people say that I’d be fine. And a common consolation line was that there were others worse off than me. While absorbing a newly diagnosed cancer sentence, the mind really isn’t doing comparisons. Well-intentioned people are better off offering hugs than phrases. And so, I prepared myself mentally for surgery. There was no choice; I was going.
On the dreaded day, it was snowing outside. This was an unusual occurrence for the first week in April on Long Island. After registering at the hospital, blood was drawn and I met the anesthesiologist. An employee gave me a gown to change into, along with a hairnet and stockings with booties. I was informed that the stockings are worn to help prevent blood clots in the legs. Next, the operating room registered nurse came to get me. She took me by the arm and led me into the sterile room. I climbed on the table and remembered that the room was freezing. An IV line was inserted into one of my hands.
Next thing I recall, I awakened in the recovery room. I was extremely nauseous and felt as though my head would fall off my body if I moved. Every few hours, various technicians drew blood and I was given iron and potassium supplements by the nurses. I was also given Heparin injections as another preventative for blood clots in the legs.
For the first day or two after surgery, I was solely permitted soft foods. I also began taking Synthroid, an artificial thyroid substitute. I was told by my doctor that I had a complete thyroidectomy and thirty-one lymph nodes removed. Five of which were positive for cancer.
After spending several nights in the hospital, I wanted to come home in the worst way. I was tired of the nurses coming into the room to tell me to get up and walk around. Were they kidding? I had an IV line, catheter, and hemovac inserted into my body. My head was wobbly and I was supposed to get up and walk. I tried as best as I could; I wanted to go home. I would have attempted the Irish Jig, if that was the ticket out. On the evening I was finally released, the drive home was a nightmare. With every bump on the road, I was certain my head would topple off!
My visible scars began to heal over the months that followed. I was advised to use sun block on my scars when going outdoors in the summer months. I had one large scar that began at the middle-front of my neck, and ended as far back as my right ear. The second scar was an inch or so in length, where the prominent lymph node had been.
Approximately four months after surgery, I underwent an RAI (radioactive iodine) thyrogen study. To prepare for this test, I was placed on a low-iodine diet two weeks prior to the scan. The study takes five days. The purpose of the diet is to deprive the body of iodine. I also went off my Synthroid medication as part of the preparation. I later learned that injections can be administered instead of going off the medication. The benefit to this is not becoming tired; that is what happened to me as a result of not taking thyroid medication.
The low-iodine diet is awful, but necessary. The purpose of the diet is to deprive the body of iodine, a necessary nutrient. The main foods to be avoided are the following: iodized salt, soy and dairy products, and processed foods. I’ve found two resources to utilize for further information on acceptable food for this diet. One resource is ThyCa: Thyroid Cancer Survivor’s Association, Inc.: www.thyca.org . You can obtain a recipe booklet from them, as well as an abundance of information about the disease. Another resource is the Low Iodine Diet Cookbook by Norene Gilletz. I borrowed the book from my local library. Your doctor can also give you a list of acceptable foods, and those to be avoided.
On the third day of the study, a tracer dose of RAI is given; mine was in capsule form. On day five, a body scan is performed. Since the body has been deprived of iodine for almost three weeks, any thyroid cells remaining in the body will suck up the RAI. They cannot differentiate between natural iodine and the radioactive iodine. Hence, the goal is to destroy the cells.
My results were not shocking; traces of thyroid tissue were present in my body. This is very common. The surgery itself, often cannot remove every bit of thyroid tissue. Therefore, the next step was to be given a much stronger dosage of RAI than in the study. I went to the hospital the following week to receive the capsule. Prior to the RAI, I had to administer a suppository to avoid vomiting afterwards. I was released from the hospital immediately after the dosage. My mother drove me that day; I had to sit diagonal from her in the car. I sat in the backseat, right side. I went into my apartment and began my isolation period. Hey, I was radioactive!
The Nuclear Medicine specialist told me that if I vomited at home, his department would have to come over and clean it up. He warned me not to discard anything disposable, such as paper goods, tissues, or sanitary napkins, into the garbage. Any item with bodily fluids on it, including my toothbrush, was to be bagged and brought back to the hospital the following week. It would be disposed of as nuclear waste. I was informed that the sanitation department has sensors these days; should I throw these materials out in the regular garbage, the department may be alerted and investigate me. As gross as it was, I opted to bag!
I washed my dishes with plenty of soap and hot water. I showered and shampooed my hair several times per day to try to remove the RAI. I used plastic wrap over the mouthpiece on my telephone to prevent contamination.
The day following the capsule, I was off the low-iodine diet! I had my mother bring me two Mc Donald’s Big Macs, a large order of fries, and a chocolate milkshake. She rang the doorbell and left the food outside the door. It was too soon to have close contact with anyone. That was the best meal of my life!
As expected, my glands were swollen out to my lower jaw. Sucking on lemons and lollipops didn’t do anything to help, but it wasn’t painful and didn’t prevent me from eating. Over the next few days my glands returned to their rightful places and I felt good. No, I didn’t lose my hair; I still had enough for two people!
One week after the capsule, I returned to the hospital for the doctor to check my radioactive level; it was safe to be around people again. And so, my life resumed.
My endocrinologist visits are down to every six months. After the RAI ordeal in 2003, I didn’t require another study for a full year. Yes, I was inconvenienced by that tasteless, low-iodine diet, but the scan was negative this time. I was cancer free! No isolation needed this time and I was able to go two years in between this test and the next one. My most recent scan was October 2006. Again, the result was negative.
During routine visits to my endocrinologist, he sends me to the lab for blood tests. My thyroid levels are monitored and he adjusts my Synthroid doses as required. During the office visits, I am asked a series of questions as to how I am feeling, and my neck is examined. I will be on thyroid medication for the remainder of my life, as I would have no thyroid function without the medication. I take the little pill each morning, first thing after I awake. I must wait one hour before I can eat anything. This is my routine and I’m used to it by now.
Having Papillary Thyroid Cancer is more of a minor inconvenience to me than anything else. I despise the low-iodine diet because I love to eat. I do try to eat healthy, except for every now and then. I’ve made it a ritual to stop at Mc Donald’s after my body scans. What better way to go off the bland diet? The two times per year I visit my endocrinologist, the routine blood tests, and the scans, once in a while, are small prices to pay for my health.
I exercise, cook, clean, raise my daughter, and enjoy spending time with my family and friends. I try to be an optimistic person for the most part. We all have our good days and bad; that is normal, cancer aside. Judging from outward appearances, no-one ever suspects that I am a cancer survivor.
People often say that when you go through a life-threatening situation, you stop sweating the small stuff and focus on things that truly matter. That has not been my experience. I still get annoyed when my hair isn’t behaving, or when the house isn’t clean to my standards. I still wish my nails weren’t so brittle and that the manufacturers would invent a nail polish that actually stays on for more than a day.
I have, however, learned to be brave. I used to freak out at the thought of simple blood tests. I’m much stronger as a person nowadays. I have since finished writing a suspense novel that I began long ago, before my cancer diagnosis. I’ve collected enough rejection slips to wallpaper my bedroom. Compared to the obstacles I face as a writer, that low-iodine diet is nothing! I got through, and continue to get through papillary thyroid cancer. I’ve found inner strength that I had no idea I could muster. Life truly is full of promise.
Lisa Laird Di Rosso
lisaann15@juno.com