Tuesday, June 30, 2015

Fear Less

The heart may freeze or it can burn
The pain will ease if I can learn

There is no future
There is no past
Thank God this moment's not the last

There's only us
There's only this
Forget regret — or life is yours to miss.
No other road
No other way
No day but today

- Lyrics from"No Day But Today" (from the musical "Rent")
Scan time is looming large on the horizon, so in addition to trying to take my own advice (see "10 Tips for Coping with Scanxiety"), I have been ruminating on the meaning of fear.

Why is scan time so scary? First, there are lots of little fears that flit around my mind, such as...

  • I'm scared the IV will hurt.
  • I'm scared the contrast drink will make me throw up.
  • I'm scared that I might have some weird allergic reaction to the injected contrast dye.
  • I'm scared that when they inject the dye and it makes you feel like you wet your pants, that I might actually wet my pants.
  • I'm scared that I might breathe in when I'm supposed to hold my breath, or breathe out when I'm supposed to breathe in.
  • I'm scared that I might reach to scratch my nose when I am supposed to be holding still in the scanner.

But, of course, there is the one fear, the real fear, the one really big fear: The scan might show that my medicine has stopped working.

I used to do partner acro, and my instructor described me as "fearless." While it was a nice compliment, it was completely inaccurate. I certainly was not without fear, it was just that my desire to learn and push myself was much greater than my fear of getting hurt. The thrill of flying was much stronger than the fear of falling.

Now, my fears have shifted. Everything boils down to the one big fear that the medicine has stopped controlling my cancer. If that happened, it would mean pursuing new treatment and facing new side effects. It would mean that one of my limited options is used up. It would mean facing the fear that my time on earth is much, much shorter than I would like it to be and that this disease will take me away from the life and the people I love so much.

I was never "fearless," but now I do have less fear. I have less fear about little things, less fear about speaking my mind, less fear about taking chances and less fear about what other people might think of me. I have one giant fear that trumps everything else and that puts it all in perspective.

My drive to get everything I can out of this life is much greater than all the little fears. We only get this one life (I think), so it only makes sense to grab on tight and get all the living you can out of it.

Originally posted at: http://www.curetoday.com/community/tori-tomalia/2015/06/fear-less

Wednesday, June 24, 2015

I Wish My Doctor Knew / Leading Us Through CancerLand

You feel a lump.A bump.
A something-isn't-right.
You walk into the doctor's office.
Your heart is racing.
You can't breathe.
You see your future disappearing before your eyes.

Blood pressure
I wish my doctor knew
I wish my doctor knew
I wish my doctor knew
What it feels like
to be a patient
to have to be a patient
to have to be patient

White coats
Cold hard statistics
Medical jargon diagnosis
Gobbledy goop prognosis           
Hear me!
Standard of care
See me!
Know me!
Love me!

Know my fear.
so scared
Take my life in your hands.
all control is you
I am more than my diagnosis.
know my heart
You hold all the power.
your words swim around my head
I wish I was your one and only.
please treat me like your one and only
You don’t want to give false hope.
it’s the only thing keeping me from drowning
You hold my hand

Please guide me
Not just my body
But me
Not just my body to healing or healed or at-least-not-dead-yet
But me, my whole me, my whole self
Please know how much it hurts
Not the body, but the knowing
Please pretend that you care.
I wish my doctor knew.

Originally posted at: www.curetoday.com/community/tori-tomalia/2015/06/leading-us-through-cancerland

Monday, June 08, 2015

Your Heart's Desire

"Can you think what the Mirror of Erised shows us all?" Harry shook his head.

"Let me explain. The happiest man on earth would be able to use the Mirror of Erised like a normal mirror, that is, he would look into it and see himself exactly as he is.... It shows us nothing more or less than the deepest, most desperate desire of our hearts. You, who have never known your family, see them standing around you."
- Dumbledore, from Harry Potter and the Sorcerer's Stone

I am one of the lucky ones who, despite a diagnosis of stage 4 lung cancer and the terrible prognosis that goes along with it, is doing remarkably very well on a targeted medication. Yes, I deal with side effects, like my ongoing stomach issues ("Mommy has a sore tummy") and I sleep much more than the average mom of three small children. Compared to where I could be, I am doing fabulously well. So well, in fact, that cancer often takes a back seat for our family. It is always there, of course, lurking in the background, but often we can mostly ignore it.

Sometimes, however, its impact sneaks up on me in the least likely of places. Take, for example, when I am reading "Harry Potter" to my six-year-old son.

"However, this mirror will give us neither knowledge or truth. Men have wasted away before it, entranced by what they have seen, or been driven mad, not knowing if what it shows is real or even possible.... It does not do to dwell on dreams and forget to live, remember that."

"Mama," he interrupts me. "Mama, I'd be like Harry."

"… Like Harry?" I asked.

"If you died, the one thing I would want most of all is to see you again," he said.

This simple remark left me frozen in my tracks. I was left speechless. I was trying to process his words with the knowledge that, in all likelihood, this is indeed something that he will face.

How do I prepare my children for the future?

So we talked about Dumbledore's sage advice, that if you get lost in what you wish could be you will end up missing out on the life that you get to live. Harry's parents are gone, and no amount of gazing into that mirror will bring them back. His parents would want him to relish the life he has, and find the joy that is his to discover.

It is impossible to ignore how profoundly my illness has impacted our family. But, as I remind myself over and over (and over and over), none of us are promised tomorrow. All we can control are the choices we make today, and the life that we lead from moment to moment.

"It does not do to dwell on dreams and forget to live, remember that."

If I looked into the Mirror of Erised, I think I would see my husband and I growing old together, watching our children grow up and become the remarkable adults that I know they will be.

Has cancer changed you? Do you live your life differently now? And if you looked into the mirror of Erised, what would you see?

Originally published at: www.curetoday.com/community/tori-tomalia/2015/06/your-hearts-desire