Not Scarred by the Scar

(These events occurred after my second surgery for papillary thyroid carcinoma in April  2009.)

A few weeks before my surgery, my 13-year-old son, Jon, was a little more excited about the upcoming event than me.


He enthusiastically commented, "Yea, cool, mom, so are you nervous? Like they're going to go in there and slash you open and look for the cancer!"

I bit my tongue, for about five seconds, then calmly informed Jon that I was his mom, I loved him and I didn't take offense, but warned him against speaking that way to any other cancer/surgery patients. I'm not sure if he got it or not.

My husband, Scott, was a little more dramatic when I first removed the cool white foam neck guard and dared look at the 6 1/2 inch scar, that extended more than half way around my neck and up to my right ear.

  


 





"Wow, you look like you got ripped open with a chain-saw!"

He did have a clever solution later, when we discussed the near-certain probability of future surgeries. "Hey, they should have just put in a zipper, so instead of another surgery, we could just zip it open, take out the cancer and zip it back shut."

Why didn't my doctor think of that?

Another comment came on Sunday morning during coffee break at church.  My always-laughing friend, Betty, admired my scar and said, "They really sliced you open this time!"

It really was fair game. When she came to church with a band-aid on her nose covering the spot where they removed skin cancer I glibly asked her if she cut herself shaving.

I guess we're even.

After my 6-year old daughter, Rebekah, got used to the scar, she had news for me.


"You know what it looks like Mom? Let me show you!"

She dug around in the scissors drawer until she came back with this pair and held them up triumphantly. She asked me if the doctor used scissors to open up my neck. We must not have satisfied her curiosity, because a few days  later she questioned us further.

"Did they use a plastic knife or a sharp knife?

I needed clarification. "Do you mean when they cut me open for surgery?"

"Yes."

Daddy decided to add his expert commentary. "They used a sharp knife."

Beka, "Oh, a sharp plastic knife?"

Mom, "No, a sharp metal knife. It is called a scalpel. It's sharp so it doesn't hurt. They use it once and throw it away."

"Oh."

I have been thankful that we have been able to communicate about something that is horrible and scary - cancer. Teasing and joking are acceptable methods of dealing with stress, and I am thankful my kids and husband  felt comfortable enough to tease me.  That is normal for us.  Normal feels good.

The scar doesn't bother me. I don't cover it with a scarf, I don't cover it with makeup.   Maybe because I'm happily marrried and my husband doesn't care. Maybe because I am getting wrinkled and gray and one more flaw can't make that much of a difference. It also helps that at 5 foot 2 inches, I am shorter than most people and they are looking down on me and don't really see my neck.

I also look at my scar as a symbol of overcoming.  The Lord has been my strength and my song, and many prayers have padded the rocky road with peace and comfort. A nurse told me to wear it proudly, because I was alive.

I loved the saying on this framed text in an antique store - not enough to buy it, just enough to photograph it.

By the way, I consider this photo spiritual foreshadowing.  I saw this two weeks before I found out my cancer had returned.  The Lord was preparing my heart.

It Was Just A Little Lump

My husband and I had just moved from the Midwest to the Pacific Northwest with our six kids. In the midst of all the chaos my oldest daughter began suffering with daily headaches and I was plagued with a neck ache. It hurt to sleep, it hurt to stand, it hurt to sit with this nagging pain. We found a chiropractor in the new neighborhood and began going several times a week for adjustments.

In October 2004, after one of the treatments, I was massaging my relieved neck when I found it.

It was just a little lump.

Just a tiny little lump on the upper right side of my neck.

I showed my husband and we began the daily task of feeling the lump. It grew over time.

I found a primary care physician. She felt the lump and called for a sonogram.They found a second lump on the thyroid. My journey had officially begun.

At the beginning of December I had a neck CT, which led to a fine-needle aspiration biopsy in January.  It came back negative. Doubtful, my doctor sent me to an Endocrinologist and an Ear, Nose and Throat doctor (ENT). She didn't want me to give up. She only said, "I'm just not comfortable. There are two lumps for a reason."

The first ENT I visited blew me off after a quick check to my neck. She said she couldn’t even find the lump. She suggested coming back every six months.

When my Endocrinologist repeated this to me I was a bit annoyed.

"Even my husband can find it! He checks it every day to see if it has grown, or if it is throbbing."

Sarcastically he said, "Oh, is your husband a doctor?"

"No, and that is exactly my point. If he isn't a doctor and he can find it, she should be able to."

I found a new ENT, he was able to find the lump.  Each step took so long because it was hard to get in as a new patient to so many different doctors. Sometimes I had to wait 6-8 weeks just for the next appointment.

By the time my Endocrinologist took me seriously and did his own biopsy on my neck it was May.

On the way to find the results of the second biopsy,  I pulled out of my 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 I had previously memorized 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. When I had trusted Christ as my Saviour at 18, I had committed to Him my entire heart, mind, soul and body. I was not about to rescind any part of that committment despite the circumstances.

The lumps turned out to be papillary thyroid carcinoma that had metasticized.  A total thyroidectomy and a radical neck dissection were performed June 2005 in a six hour surgery.   Only 1 of the 30 lymph nodes had cancer.  The doctors thought the  100 mCi's dose of radioactive iodine in August would be the final step in my treatment.

In September I found new little lumps.  Just little tiny lumps that my fingertips discovered when doing my ritual "neck-check."  My journey wasn't over.

They watched and waited and watched and waited.  In April 2009 they went back in for another surgery for those little lumps.

In October 2009 I was declared in remission.

In January 2010 my sonogram revealed - you guessed it -

three

little

lumps.

These little, less than a centimeter lumps are unwanted invaders, a cancer that cannot be conquered. The testing this time eliminated radioactive iodine as a treatment, because my body did not take in the tracer dose given.  Surgery is not an encouraged at this time because you can only have so many neck surgeries in a lifetime, and I have already used two of my options.

So, we watch, we wait and we hope and pray they don't grow.


Because they're just little lumps of papillary thyroid carcinoma.

Introducing Momma Mindy

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.