Let me take you back to 1968 when I was first diagnosed with thyroid cancer at the age of 29. I was already a volunteer at the American Cancer Society doing public education. That was helpful in guiding me towards questions to ask. But I sure didn't know what was in store for me as a thyroid patient and even the ACS had little information on Thyroid Cancer.
At the time, I had 3 children under the age of five, one of them newborn. I didn't think I would ever see my baby walk or my daughters married. There were 5 operations in 4 years for papillary and follicular well differentiated carcinoma, as well as Hashimoto thyroiditis. My disease did not give in so easily. Treatment was at Memorial Sloan-Kettering Cancer Center in New York, I became a Boston to New York shuttle commuter. Imagine trying to catch a cab in Manhattan when you are hypothyroid!
In those days the pace in medicine was a bit different, A tour was offered to me at the hospital to pick out my room for a 5 day isolation. "This room, the nurse exclaimed, is a very special room. It was used for the Manhattan project when they were doing testing for the atomic bomb, it even has lead lined walls," she said proudly. Kind of made me think I was in big time trouble.....now they were going to split atoms in me!
Then came the fun stuff. The promised afternoon cocktail was delivered with a cheerful smile from my nuclear medicine doctor.It certainly did not resemble any cocktail I had ever seen! I felt so important when they brought that geiger counter in and ran it across my body. After all, I knew absolutely no one that had EVER been read by a geiger counter.
During those first five years I experienced all that so many of you are going through now. I tried maintaining a normal life continuing my work even becoming a brownie leader to 30 little girls. But the mysteries of thyroid cancer were ever present. Unlike today, there was no information available about my disease and certainly no one to talk to about it with, except my very busy doctor. Because of my activities with the American Cancer Society I was viewed simply as a cancer patient not a thyroid cancer patient, it was very isolating. I was out talking about every familiar form of cancer except the one that was most familiar to me. My cancer didn't seem to be all that important. I was told so many times, "Oh thyroid cancer. That's not as bad as other cancers." Could we give them an earful on that one!
The advent of the internet, it's information super highway with medical resources beyond our wildest dreams, as well as newsgroups and chat rooms, has taken our problems very public. This is a reason to rejoice! In December 1997 I went online for the first time and also found a thyroid newsgroup. I couldn't wait to get out there to talk and help other people. It was as if a curtain had been lifted after 30 years.
Over the years many things have happened that were unexpected and rather funny. For instance, the time I returned from a scan and was still quite hypo. I was standing in front of the full length mirror that had hung on my door for years. I reached over and pulled my husband in front of the mirror. WHY did you do it? I asked. "Why did you buy a new mirror while I was away. Look at how distorted YOU look!" With a blank look, .......he said, "I didn't buy a new mirror!"
Yes, life as a thyroid cancer patient is full of surprises. Like puffy eyes, tingling fingers, leathery skin, brittle hair and a multitude of symptoms that hang around so long that one loses track of what normal is! When people talk about foggy days I get very confused. Are they talking about my kind of fog or the weather.
Thyroid cancer presents us with many challenges. For instance, do you feel so revved up you are moving at the speed of lightening or is your speed moving at one mile per day? For me, It was more like my car came to a complete stall. Yes it was annoying but there wasn't a heck of a lot I could do about it. And
anyway, my endo told me the thyroid pill would fix everything! Famous last words!
Actually, my 5 year old son had an idea for a cure that seemed to make sense to him. He had only known his mother to be sick so one day, out of the blue, he asked "Did your doctors ever try giving you chocolate milk to make you better?" We discussed that they had not because it isn't considered medicine . So began the chocolate milk phase of my recovery. I never knew when he would show up with a tiny cup of chocolate milk for me. It could be bedside first thing in the morning, or out in the garden picking flowers. It didn't matter. It was when he thought I needed it, or maybe when HE was thirsty! Needless to say, chocolate milk holds a very special place in my heart. It helped my son and I through a very difficult time.
I have always felt the disease is worthy of vigilance but not of controlling my thoughts full time. There was no anger about the disease because it served no purpose. Well, I did get angry once! By this time I had been through 3 or 4 surgeries and was having a checkup. I glared at my doctor and said, "How come every cancer patient I know loses weight and all I do is gain it!" Have you ever noticed that when we are tired, achy and worn out because of thyroid cancer, we are considered courageous! Couldn't they find a better way to do this?
When negative events occured like being told I was one of those that did not take up iodine, I chose to reflect on more positive things like, " I hope the Boston Bruins win the Stanley cup this year!" Confronting the disease was always important, but not important enough to keep me from thinking about something a
little more fun.
The concept that life has been better because I had cancer is often a difficult one for people to understand. But I would bet anything that there are those among us that feel the same way. I learned to look at life differently. That which was truly important became crystal clear. I learned to live first, worry second and even sometimes, not to worry at all. I savored the little things in life like a spring day or a robin chirping. The focus that I achieved taught me to face realities and to appreciate what I have; moving on easily to things I really enjoyed and leaving the other stuff to fall by the wayside. I am not sure that would have happened without being a cancer patient.
A number of years after my lung surgery for metastatic cancer, new nodules were found in my lungs on a CT scan. I was hardly prepared for the medical response. The nuances of this disease are never ending. This time my endocrinologist said that he would do nothing. They were dormant nodules. I was horrified at his response but on the other hand ecstatic! I didn't have to go off my thyroid meds! I was concerned. The x-rays were then taken to the internist, a specialist in pulmonary disease. He said," it might have been better if we never found those." Then they were sent to Sloan-Kettering and the reply was, "Goodness , who knows how long they've been there!" Finally, I simply put it behind me. In retrospect, I believe I felt like I hit a home run. The nodules are still there but I let my doctor worry about it.
Those of us here, as well as our friends who couldn't make it, all know how important this conference is. However, I would like to put in perspective from my vantage point, just how important. In all those years of volunteer work at both the ACS and the Dana-Farber Cancer Center, I never once met a thyroid cancer patient! It wasn't as though I wasn't looking; I was in the thick of it! Thyroid cancer can be a lonely disease. But not anymore!........... We all have Ric Blake to thank for his vision. My hat is off to you Ric.
Share your experience with other patients, it will make a difference to both of you. Every single story is important! This conference is the beginning of something long overdue and very important for all thyroid cancer patients everywhere. We are the faces and voices of this disease. No more mysteries about thyroid cancer! People are going to know that ThyCa exists, that we can help, that we can give hope and that we are survivors!
I wish you all good health, a clean scan, a good thyroglobulin, and a great TSH!
By Gail Gundling