I haven't written anything here in a while. I've had quite a lot going on the past few months. Hopefully, I'll be writing a little more often now. I wanted to share with you a letter I wrote to my thyroid that was published on http://dearthyroid.org/ yesterday. The link to my letter on the site is http://dearthyroid.org/rest-in-peace-my-dear-thyroid/. I'm sure a lot of you have already seen this on my Facebook and Twitter accounts but I wanted to share it with those that haven't had the opportunity to read it. I hope it helps you in your journey. I welcome your feedback. :)
June 11, 2011
Dear Thyroid,
I am so sorry. I’m sorry that hypothyroidism made you sick and not able to function properly. I’m sorry that I didn’t see your warning signs of severe depression and weight gain until it was too late. I want you to know that I tried to help you get well. I went to the doctor and he gave me Synthroid and said that we should both start feeling better. A few weeks past, then a few months, then a few years and changes to the Synthroid would be made occasionally but neither of us felt any better. Eventually, I adapted to the new lower energy level and fatigue, weight gain and depression and just went on with my life. I promise I didn’t forget about you, I just didn’t know what else to do to help you.
My husband and I decided we wanted to have a baby and we tried for almost a year with no luck. I knew your illness could cause us to have difficulties getting pregnant so I requested to see an endocrinologist. I had high hopes that he would be able to help you and me. When my doctor called me with the appointment date and time, I immediately felt sick to my stomach…I was fearful that there was something terribly wrong with you. Unfortunately, my fears were realized at my first appointment with my endocrinologist. We talked about you and how we came to be in his office. He felt of my neck and of you and told me that you had a large nodule on your right lobe. It was 3x4cm large. I started crying because I knew exactly what was wrong with you before he even gave me the possibilities. He said that he wanted to biopsy you to know for sure but that there was a 95% chance that it was benign. The ultra-sound guided biopsy was three weeks later. I hate that you had to be stuck with a needle six times and I know how angry you were with me because of the intense pain you caused me in the two weeks after the procedure. I was heartbroken and so scared when I was told that you had cancer-Papillary Thyroid Carcinoma. The endocrinologist said that the best option was to have you surgically removed since radiation was only an option if the cancer was more advanced and chemo doesn’t kill thyroid cancer.
Surgery was scheduled for almost four weeks after the diagnosis. I asked the nurses if I could have a picture of you when they removed you and they said that I could. I had the picture as soon as I woke up in my room after surgery. You looked terribly sick. The nodule took up your entire right lobe and the left lobe was black with disease. My surgeon told me that when he removed you the tumor was wrapped around the nerve to my right vocal chord. It had been paralyzed. I was so angry at the cancer and happy that you were gone and I had hope that I would begin to heal and to feel like a new person soon. I had a massive dose of radioactive iodine to kill any remaining cancer cells that may have been left behind after surgery and the following scan said the cancer was gone. Seven months after you were taken from me, my endocrinologist told me that my thyroglobulin blood levels were elevated and that he wasn’t sure why. So we just watched and waited for another four months and the levels kept going up. I had a repeat radioiodine scan that showed negative for cancer but the blood levels didn’t agree so I had a PET scan. One tiny lymph node on the left side of my neck glowed on the PET scan results-cancer. I had a contrast CT scan to confirm the PET scan results-again, cancer. We scheduled a left neck dissection to have lymph nodes on the left side of my neck removed. Six of 15 lymph nodes removed tested positive for cancer. Two months later the lab tested my thyroglobulin again and it had dropped by almost half. Wonderful news-looks like we got it all this time.
As it turned out, that was only wishful thinking. I had a follow-up ultrasound done by a technician a few weeks after the lab results. My endocrinologist asked me if I would come back and have another ultrasound done by another doctor because he trusted that she really studied the images to make sure nothing was missed. The ultrasound done by the tech resulted as negative so I’m very glad that I did have another ultrasound because during the second one, three lymph nodes on the right side were discovered to be suspicious. Another PET scan was performed and had a negative result then a biopsy of two of the lymph nodes had a positive result. Surgery was seventeen days ago.
I'm planning a trip to MD Anderson in Houston in the next couple of months. I'm looking forward to the trip. I think it will be very beneficial to have a second opinion just to make sure I'm doing everything I can to fight the cancer that took you from me. External beam radiation on my neck is a possible treatment but the risk is that the cancer could show up in a different area in my body. My case has been very complicated and difficult. Anything that was "rare" or "unlikely" to happen did happen. So, needless to say, anytime those words are uttered to me I worry.
In 21 months, I have had a total of three surgeries to remove you, dear thyroid, approximately 30 lymph nodes, 11 of which proved to be positive with cancer, and two vocal chord injections to help me be able to speak with a paralyzed chord. We were 26 years old when we started this journey and the vast majority of it I've traveled without you. I'm now 28. I have to say, I expected you to be a distant memory by now, but I have learned that life will not be easy without you; it will be a day-to-day struggle with internal symptoms and medications. Having a disease that doesn't show physically is hard to handle...if it can't be seen then there must not be anything wrong, right? I have hope and faith that this journey will someday be a memory that I can reflect on with grace and appreciation for it making me stronger than I ever thought I could be, but I will miss you every day for the rest of my life.
My hope in writing this letter to you was to put any hard feelings and hurts to rest so that true emotional healing could take place. I believe that's been accomplished. Rest in Peace, dear thyroid. I am strong enough to survive without you.
All my love,
Jess
