When you are sorrowful look again in your heart,
and you shall see that in truth you are weeping for that which has been your delight.

~ Kahlil Gibran, from"The Prophet"

Friday, August 13, 2010

Lost in Translation

There is a movie by this title which I've not seen, but I often think about the phrase as I try to explain the cancer life ~ Erin's cancer life ~ my cancer life with Erin ~ the depth to which I've been affected by it all. I've come to the understanding that some things just have to be experienced first-hand in order to fully comprehend them.

Not long ago, at a little social gathering with a group of friends, we all listened as one relayed an account of her personal experience with a ride she'd dared to try at Great America. She described how she'd waited in the long line that hot afternoon. Finally when it was her turn, she'd sat strapped to a seat, and was hoisted to the top of that Giant Drop Tower some 200 feet in the air. She'd waited, her fingers tightly gripping the safety bar, while trying not to look way down to the ground for that agonizing period of time as her blood pressure increased. Hyperventilation began, ensuring the desired maximum level of knot-in-the-gut apprehension before the impending drop.

Then came the actual plummet - a high speed freefall that had invited her heart to migrate to her throat, followed by the swift arrival of her stomach to keep it company. She told us how she'd stepped off the ride afterward ~ gait unsteady, fists still clenched, whole body shaking, heart pounding wildly and breath coming in gasps. We all listened to her detailed description, complete with from-the-scene facial expressions and gestures as she recreated the whole episode for us.

In spite of her thorough, animated narrative of the whole event, could I REALLY feel that ride the way she did?
No. Not even close.
I'd calmly sipped my wine and munched on some more of the delicious crackers and dip while I listened to the story.
I would've had to actually sit in that seat in order to do so.
Yes Mrs Potts, let me confirm Erin's chest CT for next Tuesday at 10:00AM, bloodwork at Noon, followed by her full-body bone scan beginning at 1:30PM. You should be out of here by, oh say 5:00PM. The ladies room? Yes, it's right next to the waiting room.

We'll talk about the results while you're sitting in the doctor's office on Friday. No, NEXT week on Friday. There are other patients ahead of Erin.

Try not to think too much about that appointment in the meantime. It doesn't help to think about it all the time.
Oh, and Mrs Potts, make sure you eat well and get some sleep. You look a little frazzled.

I don't often watch scary movies. They freak me out. But I've seen a couple in my day, with details so disgusting I'd squeezed my eyes shut and jammed my fingers in my ears in the futile attempt to keep the horrific images and sounds before me from penetrating my heightened senses. With the bile of panic rising in my throat and chills crawling up and down my spine causing the hairs on the back of my neck to stand at attention, I'd somehow survived the two hour assault on the big screen in front of me ~ an innocent spectator to a nightmarish scene of events.

If I described one of those movies to you, with each gory detail intact, you'd probably say - eeew gross or wow, that sounds creepy.
Could my detailed account of what I'd seen impact you in the same way as it would if you yourself had sat in that chair right next to me, clutching the armrest between us while staring up at that larger-than-life screen?
No. Not even close.
You would've had to sit next to me in that theater.
Mrs Potts, we are going to begin the bone marrow aspiration now.
If you want, you may stand next to Erin and hold her hand while we do so.
Ready now?

Good! No more fluid is draining. We can finally pull the chest tubes today.
If you want, Mrs Potts, you can sit right there where Erin can see you.
Oh yes, I know Mrs Potts. Most people don't realize how large and long they really are until we pull them out.
Erin is fine now. Why don't you just step out into the hall for a moment to catch your breath.

We're now going to begin radiating her scapula.
Yes Mrs Potts, I agree. That machine is enormous, and very powerful.
You may stand here with me behind the glass and watch if you'd like.
Really, you're more than welcome to do so each time we radiate all the affected areas.

Yes, of course I will stay with her.

I was recently at the Warren Dunes in Michigan, on the beach at sunset. Off in the distant southwest skies a thunderstorm brewed. I sat, mesmerized, as the clouds gradually began to churn an ominous concoction ~ an agitated meld of angry hues, blues and grays growing darker by the moment, the beginnings of a tempest, an outrage. Lightning sliced through the sky, in powerful and unpredictable bursts of violent energy. Mother Nature's powers mounted, crashed, banged. Take cover! It's coming and it's out of control!

Try as I might, I cannot adequately explain the dynamic forces, the unleashed fury of that blackening sky, so that you can really feel as though you were sitting in the sand with me that evening.
You just had to have seen that sky.
Mrs Potts, we're so sorry to tell you, but we've confirmed the biopsy results and Erin does indeed have Ewings sarcoma.
We'll need to begin the chemical assault, and in a few months we'll perform limb-salvage surgery, a hip/femur replacement.
There will be quite a few fractions of radiation also.

Oh, I have such bad news to tell you Mrs Potts. The 3-month chest CT shows a mass in her right lung. We'll need to remove the entire lower lobe to ensure we get the whole tumor. We'll begin more chemotherapy after she heals from the surgery.

Yes Mrs Potts, I'm afraid our suspicions are correct. There is indeed a tumor pressing on her brain causing the strange symptoms she's been experiencing over the past few days. We'll need to surgically remove that.

I'm SO very sorry but there has been significant bleeding into Erin's brain which has caused the inability for her to move the left side of her body. Oh yes Mrs Potts, I know. This is just awful - absolutely dreadful.

But, in that same endless sky, at the very same time the thunderstorm was raging to the south, the setting sun began to appear directly to the west. Vying for my attention, it stubbornly pushed through the clouds that attempted to stifle its entrance. Initially I didn't look too closely at it, for I was too riveted to the prominent forces of the storm, consumed, dragged into its power.

Soon, a gorgeous ball casting brilliant shades of yellows, oranges and pinks burst through, with luminous rays penetrating the surrounding darkness, light shimmering across the choppy waters. I found my body shifting to face this emergence, my focus now much more interested in this spectacular sight, awestruck by its resilience against the threatening darkness.

As the storm continued to wage its fury to the south, the staggering radiance before me began to soften over time. The tones gradually became subtler, more muted, fading to a glow on the horizon, and then gently, peacefully slipping down and becoming one with the now-calm water ~ a stunning vista of tranquility.
You simply had to see it all.

I have cancer?? I'll be OK.
Mom, I'm fine. Stop worrying.
Yes, I accept that I can no longer play volleyball.
I like coaching the setters.
It is what it is mom.
Can Keenan sleep in my bed?
Sure, I'll just do chemo after school. No problem.
I want to be a nurse.
Let's take a drive and get some ice cream.
That's OK, the kids are busy.
I have to wash my wig because my hair is coming out again.
Yes, I know things are bad, but I want to go to college.

...I'm ready for it to be over mom...
...I love you mom
it's time...


  1. Your writing is amazing...that beautiful sunset, fading,yet the awful storm raging. Focus on that sunset, hard to do as that storm brewed!

    I am left speechless, that describtion was perfect. I can see it all, but you feel it.

    Much love to you as we hold your hand and you weather the storm. The aftermath and clean-up are difficult. xxooxxoo

  2. Hi Mary,

    Your post has left me reeling. The amusement park ride sounds crazy, the storm wild, but you're right - those are "you had to be there" stories.

    I have my own equally devastating version of the "your child has cancer" story. I was there, and I felt those agonizing emotions return as I read your post. Your writing is so powerful. When the doctor gave us Caroline's pathology report, I doubled over, covered my face and my ears - I tried so hard not to hear his words (grade 4 tumor, brainstem, 1 year). How I wished that was just a bad movie, soon to be over with the flick of a light switch. I too, stood outside the window during radiation, with tears running down my face as I watched my brave 13 year old, head screwed down to a table, have her brain radiated, everyday for 6 weeks. And I stood at her feet, holding her hand, during so many 3 hour MRIs, trying to stay in the perfect spot for her to see my face reflected in the mirror mounted just inches above hers. Me trying not to cry.

    I wanted to tell you that I understand, because I was there, too. You definitely had to be there.

    With much understanding, Carol Herrmann
    Caroline's mom

  3. You and your girl are beautiful souls. Your words have left me tearful, sorry, understanding, empathetic, and in solidarity with you. xoxo

  4. Mary - your writing is so graphic that I can almost see and hear through your words. I met you at the TCF meeting last Monday and I couldn't wait to get home and view your blog. What a tribute to your daughter who clearly was a wise young woman with much to teach us all. I found the 2nd year after Michael's death to be the hardest by far and, while my experience is different than yours,I too have been there - where none of us ever wanted to be. Keep writing, your words can touch many as we struggle on this journey. Pat McGrath

  5. I am truly amazed at your writings.

  6. Carol, thank you for sharing those difficult moments and telling me you understanding. Karen, I know you know... thank you. And Pat, thank you for your kind words and encouragement. I just ordered your book from Amazon. "Just Every Day"... such a perfect title.

    To those who stand on the outside, thank you for caring so much.

  7. Mary - once again I am emotionally drained just from reading your account of what you have gone through... I stand in awe of your strength and the fact that you can face each day going forward, with an eye to what Erin would want, to what will ultimately be healthy for you and your family. Erin was a beautiful and strong young lady, and that is because she had such a fine example of a woman from which to learn. And then, from what you have shared, she has taught you about life, and now, through your accounts, teaches others. You are right - I can only imagine what it would be like to go through what you have gone through...no one else really knows.