By the time I clearly understood where a thyroid was located and what it was for, I no longer had one.
It was cut out and incinerated in the hospital's garbage in the hopes of eliminating papillary thyroid carcinoma. The lump that had metastasized to the right side of my neck, along with 30 lymph nodes, were removed and tested. Three months later I was isolated with a treatment of 100mCi's of radioactive iodine. This was followed by six months of a very high dose of artificial thyroid hormone, levoxyl, a period which is nicknamed Hyper-Hell for all the right reasons.
I was told a few things from my first endocrinologist.
1. I only had a 5% chance of dying from thyroid cancer.
2. I would never be considered cured or in remission
I also was told -
"If you want to ask anymore questions, you'll have to make another appointment."
"You asked me that last time."
Not only was I thrust into a new life as a Mother Living with Cancer, I was thrust into that life of learning to be my own advocate concerning my health care, including searching for doctors until I found the team I wanted to accompany me on the journey I didn't plan to take.
At the time of my initial diagnosis, I was 40, had just moved with my husband from a lifetime of living in the Midwest to the Pacific Northwest. We were still in culture shock. We had moved away from all our friends and family members. The oldest of our six children was in her senior year of high school and our youngest was only two.
Four months after moving, I found a little lump on my neck. My new primary care physician ordered a sonogram. It revealed another lump on my thyroid. It took almost eight months of testing, waiting, testing, waiting, for the doctors to conclude it was cancer.
On the way to find the results of the second biopsy, I pulled out of the driveway and was immediately filled with the Presence of the Lord. It was a surreal peace and comfort, the kind you read about in books. Bible verses began flooding my mind, "I am with thee and will keep thee in all places, sayeth the Lord," and "For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come, nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord."
At that moment, I knew I had cancer. I also knew that I would not be on the journey alone.
After the first treatment we continued life by buying a house, watching three kids graduate, continuing to homeschool the younger kids and welcoming a son-in-law and two grandkids into the family.
The four years were filled with continuous testing, watching suspicious lumps grow on my neck and blood work. There was never a peace, always that feeling that something was lurking.
By early spring 2009, we knew IT was back. In April I had my second surgery to remove two more cancerous nodes. I suffered much nerve damage, but no further treatment was given. My third, and hopefully final, endocrinologist, carefully monitored my body, giving me the wonderful word "REMISSION" October 29th, 2009.
My blood work and sonogram January 29, 2010, brought me back to Cancerland after a too-short vacation.
In three months I managed to grow three new cancerous nodes. Because the tumors are so tiny and so aggressive, my team of doctors is still trying to decide the best course of treatment.
My past few weeks have been filled with the song and dance chronically ill people know, sitting in ugly waiting rooms, listening to doctors, taking tests, hoping the next person who draws your blood won't leave such carnage and
waiting...
waiting....
waiting.
But, while I'm waiting, I'm praying. I have not walked the past six years alone.
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"Not only was I thrust into a new life as a Mother Living with Cancer, I was thrust into that life of learning to be my own advocate concerning my health care, including searching for doctors until I found the team I wanted to accompany me on the journey I didn't plan to take."
ReplyDeleteYour words echo in my heart.
Learning to be our own advocate sounds so simple, but it is so hard! We have to deal with so many different doctors and technicians. Many are caring and attentive, but some are coldly indifferent and, sometimes, downright rude!
I also worry about what will be if, God forbid, I am not able to advocate for myself, for whatever reason.
None of us planned on taking this journey, but... here we are.
At least, we can travel together!
Yes, and it is comforting to travel together. Yours sounds like a particularly windy road. I do believe that it is windy for us all but more for some than others. Having a cancer that alludes the medical community is not easy.
ReplyDeleteI too have found that taking control and finding my own answers has helped the most. I wouldn't be where I am if I hadn't.
You are in my thoughts and prayers...everyone.
Cathy