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Cancer-versary

On August 28th, 2013, I received That Call.


"Hi, Mandi. How are you?"

"Hanging in, thanks. And you?"

"Well, thank you. It's about 7 pm, and I'm calling from my cell phone. Can you hear me? Is this a good time?"

"Yes, it's all fine."

"Okay, then. Well, I just wanted you to know that I received your thyroid biopsy results. And they indicate that you have tested positive for a malignant neoplasm of your thyroid gland."

"For what?"

"For thyroid cancer. Mandi, I'm so sorry. Tomorrow, during business hours, let's talk in-depth so we can set up a time to meet a good surgeon and discuss your best options."

"My - wait, I have cancer?"

"Yes. And you have options. We leave the thyroid in and try some chemo and radiation. We could also do nothing and hope it doesn't spread, though that's a risk I'm not willing to take, especially in your situation. Or we can schedule you for a thyroidectomy, remove the gland, and you'll be fine. Thyroid cancer is generally easy to treat. Once we remove the gland, you'll have a 90% survival rate and feel significantly better within six months."

"Then I want that option. The latter one. I don't want chemo if I don't need it yet. I want the surgery."

"I figured. Let's talk with a surgeon tomorrow. Tonight, take some time to think about all of this."

"Okay. Thank you."

"You keep hanging in there, Mandi."

"I always do."

*

Words started flying around. Well-meaning doctors, therapists, and friends said that I was lucky. Thyroid cancer wasn't uncommon. The survival rate was amazingly high. The complications post-surgery were few and far between, and often rare. Yes, I'd have to be on a thyroid supplement for the remainder of my life, but I'd been on that supplement for five years by that point. And when you already take handfuls of pills a day, one little yellow one in that mix makes no difference - unless you find out, once your thyroid has been removed, that that pill isn't absorbing in your body, and your cancer-filled thyroid still produced enough of the right hormones to keep you alive.

But who would have known? Last year, it was still easy. I still felt a great deal of hope. I said I'd never be the type of person who would start making a big deal out of this, because I'd be perfectly fine and cancer-free by Christmas. No Relay For Life, no advocating for charities, no cancer talk beyond the normal "everything is fine, I had treatment and surgery and made it!" conversations. Again, it was "easy." And while I didn't like that people didn't treat the fact I had cancer - because it was just thyroid cancer - seriously, I was relieved to know I'd be fine. My surgeon said it. My endo said it. Other friends who had been through the cancer and surgery said it. Death and suffering from thyroid cancer and post-surgical uncontrollable hypothyroidism, as well as myxedema coma? So rare that I'd never know that situation.

Only I was their exception. Everything they said wouldn't happen did. Everything they promised was false. And suddenly, I longed for easy. I longed for just the surgery, the eradication of the easy cancer, and living with the three-inch scar on my throat.

I longed for a normal life.

*

Since November 4th, 2013 - the day of my thyroidectomy - I've been hospitalized nine times. The first two times after the surgery were due to hypocalcemia and hypoparathyrodism, which can occur post-surgery, but usually are treated well with constant calcium drips and Synthroid injections. Unfortunately, the hypocalemia lingered within me. It's under control now, but was so bad for a while that doctors assume it will, one day, return. But still, I seemed cancer-free. I had three new pills and three new medical conditions, but so far - no cancer.

But then the surgeon spoke. And he said the words I wish he'd never said:

"The cancer is still there. It spread. We still have more to do."

After that, there were more hospital stays. I couldn't keep myself awake. I would shake constantly and my temperature would drop. My moods changed rapidly. I'd get puffy and lose track of place and time, thinking I was asleep when I was actually awake (when I was ABLE to stay awake). Myxedema comas, the ICU, radioactive iodine, heart monitors - they became part of my life. I made it through Christmas Day with a TSH that was 300% higher than normal so that James would have a happy day with his parents. I crashed the next day, and didn't wake up for 36 hours after. My body was starting to fail.

Doctors, nurses, staff members, social workers, cafeteria staff, and even housekeeping started to recognize me. I became a symbol to them. I was their "ICU Fighter." My nurses would hold my hand during all the IV sticks - even though IV's never caused me pain - and other tests, and tell me that the more I fought, the better the outcome would be. Friends came in and made me laugh. Toby sat by my side constantly and told me we'd go home soon. This was not it. Everyone meant so well. Everyone was so kind.

How were we to know?

*

In April of 2014 - my seventh stay - I stopped breathing long enough that they had to use the paddles. I received blood transfusions. I was deemed "too complicated" by so many doctors and members of the endocrinology board that I knew - I KNEW - they were going to tell me I was going to die. They never said it - not then - but deep down, I knew. I'd prepared my letters for Toby and James. I was ready.

But then, I came home, and thanks to the transfusions and loads of IV Synthroid pumped into my system, I held out for two full months. Eight whole weeks without seeing the inside of a hospital. It seemed like a miracle. I started losing weight, biking, and living. The cancer was still there, but I was fighting, and I was winning.

Until I wasn't. Until I became "that girl" - the one my endocrinologist called the rarest case he'd ever seen. The words stung. I didn't want to be rare. I wanted to be common to him - another patient with a thyroid removal and a 90% survival rate. But suddenly, as my TSH kept climbing and my lips lost their color and stained a permanent blue on the corners, I became "that girl." I couldn't be treated. I could be managed, kept comfortable, but would remain an enigma otherwise.

On August 14th, 2014, I was told I would die in 12-24 months. My case was terminal.

But keep fighting! they said. You can keep fighting!

And I am. I fight on the phone, trying to get my insurance company to help me obtain one med that might extend my life. I fight with my endo about the best course of treatment. I fight with hospital staff about quality of life. And I fight with myself, because I feel as though I let everyone down. Why wasn't this easy? What did I do wrong?

But now, I truly start the process of living. I have to cram decades of life into two years, just in case. I've lost most of my hair, my skin color, my ability to stay warm. I've lost my sense of security. I've lost time to fear, to monitoring my blood pressure and pulse ox, to arguing about insurance and prescription coverage. I've lost my pride, too.

I have gained something tremendous, though - perspective. All of those times I wanted to be dead? Those feelings are gone. Major Depressive Disorder chemicals aside, DID experiences and bad memories and flashbacks and PTSD? I can cope because I have to. I have no choice. I can cope because I KNOW I'm going to die, and I don't want to. So I can wallow, or I can live. And I am going to choose the latter - for my family, my friends, for myself, and mostly, for James. He deserves a mom. And he'll have one. I will be there for him until the last bit of air escapes me, my heart fails, and I pass onto the Next Big Thing. And when - not if, but when - that day comes, I hope he knows how much his mommy loves him. I hope he knows he was the illumination within my soul, just as Toby has always been the solid path that has led me toward a loving and stable home. I hope they know that they were everything, and will always be everything.

I hope they know I fought the hardest for them.

*

It wasn't planned, but for my cancer-versary (so far, anyhow), Toby, my mother-in-law (or Mom), and I watched "The Fault in Our Stars." The young lead character has thyroid cancer, and while I could mock the fact that they'd somehow left out her thyroidectomy scar, or that she wasn't using her oxygen properly, the story hit far too close to home. After the movie, Toby's mom went to bed, Toby and I played a quiet hand of cards before he crashed, and here I am, at almost four in the morning, alone with my thoughts.

Alone with this cancer, which eats at me. I hear it. You could, too, if you were here. If you listen, you can hear it.

I won't stop fighting. I know the truth, but I won't stop fighting. I still have so much to do. I still have so much to see. I still have so much love to share.

Happy one year that changed my life from "easy" to "terminal."

Okay?

Okay.

Comments

( 10 comments — Leave a comment )
(no subject) - shehasathree - Aug. 28th, 2014 11:09 am (UTC) - Expand
oneonthefence
Aug. 28th, 2014 05:05 pm (UTC)
Thanks (though sorry about the crying bit). I love you, too. ♥.
rockingthemike
Aug. 28th, 2014 01:43 pm (UTC)
i can't believe it's been a year already... continue to be strong. *hugs*
oneonthefence
Aug. 28th, 2014 05:06 pm (UTC)
I know. It's gone by far too quickly. There's never enough time for anything. I really need to make sure to fill these days, from the moment I wake until the moment the insomnia wears off. ;)

And I will. Thanks. *hugs*
howlin_wolf_66
Aug. 28th, 2014 03:49 pm (UTC)
You're doing great. You ARE great. I'm blessed to know you. *hugs* <3 xxx
oneonthefence
Aug. 28th, 2014 05:07 pm (UTC)
Thanks on all counts. And believe me, I'm blessed to know YOU. Just so YOU know. ;)

*hugs* <3 xoxo.
theenginesshot
Aug. 28th, 2014 05:25 pm (UTC)
You know I love you.My heart aches. We will meet in October (does that sound good) It's my birthday present to myself, to meet such a good and caring friend, someone I consider a "soul-sister" because of how much we have in common,and I'm honored to call you my sister (If you'll let me) and friend.

Love you Mandi, and if there is ANYTHING I can do, please don't hesitate to contact me.

I was thinking last night, that I would love to help you create a scrapbook for James. It's just an idea floating around in my head, maybe when we meet we could work on it. If any of my comment offends or upsets you, please tell me <3333
oneonthefence
Aug. 28th, 2014 05:46 pm (UTC)
I do know, and I love you, too. October sounds good - let me know when you'll be in town. That is a semi-crazy month for me because James has a birthday (the 17th) and I have a birthday (the 27th), but otherwise, I'm always looking to fill the days. And thank you for those words. I see you the same way. You are a sister and dear friend. <3

And a scrapbook for James would be kind of cool. I keep photo albums for him, from the day I found out I was pregnant right up until this moment, and he has a baby book as well - but nothing "pretty" or "fun," if that makes sense. So I'm not offended at all. Whatever ideas you have, send them my way! That could be a fun thing to do together when you are here! <3 <3 <3
thedreamscape
Aug. 28th, 2014 06:05 pm (UTC)
For You
She sings in the ebony of night
Her soul presses against the mic
Bringing the ears to its knees
Her harmony fetches the passion
Waking a young person’s dreams
Her lyrics cry a river of tears
Melting the coldest of hearts
She croons the refrain
Echoing a message made clear
Music is the temptation she offers
Each inflection in tone
Leads you deeper into the path
Of her musical seduction
Like a scorpion’s sting
The stanzas are raw in connotation
The music is her retort to the world
The questions
What is there to fear
When you have no answers
Fight on in the reprise
Take no last bow
The singer has the solution
Never stop let your voice be heard
Never forget the melody
oneonthefence
Aug. 28th, 2014 07:05 pm (UTC)
Re: For You
Dear lord, you are hellbent on making me cry. I'm so touched by this. If - when - I die, you should read it at the viewing. Even if that's five years from now and not two, I still would be honored. Thank you. I love you. ♥.
( 10 comments — Leave a comment )