A Journey ~ Thyroid Cancer

March 12,2013

“Cancer is not a battle that we win or lose. It is not our fault or a sign of weakness. We are not responsible for our cancer outcomes. The crapshoot of cancer and recurrence can NOT be controlled. Celebrate yourself for each time you, despite all the trauma of cancer, treatment, and the mindset of “survivorship”, choose to love, live, lust, laugh… We are not a success story based on our cancer progression or not. We succeed when we are courageous enough to keep walking forward even with missing parts, severe pain, addled brains, and broken hearts.”  ~Dr. Erica D. Bernstein

Those profound words by Dr. Bernstein really hit home with me. It was October 21, 2011 when I found out I had thyroid cancer. You never forget the initial day and place when you hear you have cancer for the first time. I have been in remission for 1 year now.  As any cancer survivor will tell you, you are always brought back to the initial fear and racing thoughts.

I had the aggressive variant of papillary thyroid carcinoma called Tall Cell. It is shown to have a more aggressive behavior that other papillary cancers. Prognosis is poor because these Tall Cell tumors represent high local recurrence and suggest the necessity for aggressive treatment. I was staged at mpT3 pN1a pMX or more simply 4A. This means that I had multiple tumors that one or more was larger than 4cm and had grown outside of the thyroid, and has spread to nearby lymph nodes and tissue. The tissue that was involved and had to be removed was my ‘muscle strap’ in the neck and 1 parathyroid.
The parathyroid regulates calcium and phosporous levels in your body. I now have to take calcium supplements daily. If I miss any doses I experience tingling sensations in my fingers and or face.

I had the initial high dose of radioactive iodine treatment (RAI) in February 2012, 3 months after surgery. About 6 months after, my saliva gland started to swell and become painful intermittently. I was told it is a side effect from the RAI and I might always have that problem.

I need to receive tracer (smaller) doses of RAI annually for the next 4 years. I had the first tracer dose last week. The preparation prior to receiving RAI is not pleasant. This means being on a low iodine diet for 10 days. No dairy products, no store-bought bread, no fish, no beans, nothing that contains salt or soy. The worst part for me was the two Thyrogen injections. I experienced extreme physical weakness, nausea, deep bone pains. The fear of recurrence was again haunting me.

There are times when I want to ‘throw in the towel’ and give up. The daily fatigue gets in the way of even simple chores. But I am a fighter and a rebel.

I read this online:

What Cancer Cannot Do
It cannot cripple love
It cannot shatter hope
It cannot kill friendship
It cannot shut out memories
It cannot destroy confidence
It cannot silence courage
It cannot reduce eternal life
It cannot quench the spirit
It cannot corrode faith

As a cancer survivor, I am now grateful for the chance, once again, to what matters most in life. It made me aware of how strong of a woman I can be.

CINDY

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You Are Not Alone ~ Living With Cancer

11/15/2013
Cancer is a monumental experience that we would all like to convey to others. The written story is only as compelling as the words make it.
Every cancer patient has a touching, heart tugging story to tell and it will always be a ‘compelling’ experience in their mind, body and soul.
This writer’s story may not be ‘compelling’, finding the proper words have been frustrating, but none the less, these are my feelings, thoughts from My soul.

Fear is the root of so many. Fear of not being liked. Fear of making the wrong decision. Fear of drawing negative attention. Fear of being judged. Fear of overreaching. After debating with my own inner self and much consideration, I have finally made the decision to speak about my cancer again.
NOT for pity nor sympathy but out of EMPATHY.

My wish is not to convey acknowledging my cancer is any more ‘special’  than others, also my writings is not the intention to anger or hurt.

I did not write this post in a day or even two….it was a few days of careful thinking, even hesitating clicking publish.

I am not a crusader by any means. Cindy’s Paper Creation is a personal blog that is relatively new. It does not entail many following, or the following of any ‘outside’ social media….

However, if this post reaches out and TOUCHES THE HEART for just that ONE person where cancer has invaded their life, and may have had feelings of loneliness at some point….and this helps one know they are never alone…. My wishful purpose has been done.

_________________________________________________________________________________
On the day of my tests this past March, I was told my total body (PET) scan was negative. Hurray!
The very important blood test was sent out to California on March 8th.
I was so elated, I wanted to share my story publicly. So I did a post on 3-12-13.
I did the happy dance in March for 2 weeks after my tests.
I then got the call….
My thyroglobulin tumor marker was elevated. It is a blood test to monitor for thyroid cancer recurrence. Normal range is 0-3. Mine was 9.5.
Doctor said we will recheck in September. Those results came back at 9.3. I need to be tested again in March 2014.
So, what does that mean? It means no tumors but cancer cells are present in my body. They are so very minute, unable to be seen on scans. Wow, what a magnificent test!
Tall Cell Carcinoma has a high rate of recurrence but is slow-growing and it is resistant to chemo.
Okay…so now what? I am no longer in remission, I once again have the C word.
Is it just in the neck area? I was assured that is the only area in my body where the cancer cells are living currently.
I don’t want to have to wait till it grows and shows its ugly presence on a scan. Zap it now with another treatment of the high dose radioactive iodine! I can handle the month-long prep, having absolutely no metabolism, bone pain, nausea, isolation and everything else that goes along with it. Alas, the explanation from the medical professionals…is becoming toxic and the possible side effect of leukemia is of concern with another treatment at this time.
________________________________________________________________________
I have been told “you’ll be fine”. I am fine if you compare me to someone with pancreatic cancer. I am fine if you compare me to someone elses’ cancer that is far worse than mine. BUT, if you compare myself to the healthy me I was before my cancer robbed and rattled that health away, I am not fine.

These words were spoken to me…”you are dwelling and worrying over it”. I have difficulty erasing that comment from my mind. Henceforth, a sort of guilt on my part.
I have become silent in the emotional realm. I sometimes feel alone with my thoughts.
The “how are you feeling?” occurs rarely now-a-days.
On occasion, my simple “I’m doing okay” response doesn’t deem adequate.
Is it my fault? Probably so. I have made it my choice to speak of the C word as little as possible.

The distant online stranger with a common bond, has become my confidant…a change that I have learned to accept. To help cope with cancers’ uncertainty, and the emotional burden it carries.  To be able to speak without having the feeling of ‘dwelling’ or ‘worrying’.

Am I ungrateful or bitter or resentful?…Hell no!
I have received an abundance of blessings to be feeling such nonsense! Besides, it’s a total waste of my time!

Someone once asked me “Aren’t you happy the tumor marker test from March to September went down .2 ?”
I repeat to myself every day “Maybe it will slowly leave my body. You need to stay positive, have faith and pray!”

As anyone dealing with cancer will attest to, whether it’s active or in remission, those multitude of mixed emotions can at times feel epic.They can show up at a moments notice and they can disappear at the drop of a hat. We have been handed that right, we are the warriors. We will stand up and continue to fight the battle.
We used to have such crazy dreams,
The kind of dreams that brought us together, made us not mere mortals, but a movement.
We used to dream we’d get to the moon.
And we were crazy enough, fanatical enough, relentless enough, to get there.

We dreamed we’d split the atom.
Make smallpox and polio whispers from forgotten history books.
Make technology infinite, individual.
Connect the world.

All the unbelievable and the impossible,
all the can’t do and the never will, we overwhelmed them, we overpowered them, we conquered them.
They said no and we, well,
We said yes.
We stood up.
We stood up and changed the world.
Stand up when everybody else sits down
Stand up when it’s easier to turn away
Stand up for everyone who can’t rise anymore
When the answer seems impossible, stand up
When the dream is right within our reach, stand up
When the powerful refuse your call, stand up
The moment is now and the time has come to stand up.
One out of every two men
One out of every three women
will face these diseases we call cancer.
Our sisters, our brothers, our fathers, our mothers,
our husbands, our wives, our children.
Our very best friends and those we’ve yet to meet.
One person every minute, one person in a moment gets lost, gets stolen, gets taken away.
We are a tapestry of lives touched and brought together by a terrorist we can actually find.
And in the time it’s taken to read this, three more Americans have died.
Unforgivable.
This is where the end of cancer begins.
When together we become a force unmistakable.
A movement undeniable.
A light that cannot dim.
When we take our wild impossible dreams
And make them possible
Make them true
When together we rise as one
When we stand up
When we Stand Up To Cancer.

Fighting cancer is a challenge but the greater challenge is learning to live with it’s uncertainty.

I  would like to dedicate this post
To all those fighting the battle, to those winning the battle and to all those that have lost the battle.

May you forever have the power of positive energy, spiritual or in other respects
and may you never have to feel alone in your battle.

With Love,

CINDY

PS. I will continue to wear the purple shirt, with great pride!

 

 

 

 

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