“This Is What It’s About” poem

I discovered this poem I wrote four years ago while recently sifting through my plethora of papers.

 “This Is What It’s About”

 

On a day not-so-rare when I could be, healthwise, much better,

Reclined on the edge of my bed I’m rereading a letter. 

I can hardly put pen to paper without my hands shaking,

Reveling in giddy pleasure of the mark on the “cancer world” I am making. 

A tingly sensation down my arms precedes nearly tearing to happily cry,

For a side effect from cancer treatment is permanent dry eye. 

The letter’s kind words from a place I helped strongly serve to reinforce,

That success comes from trusting God to lead the only right course. 

Give thanks to God, I’ve learned, in ALL circumstances,

His Power outweighs statistics and life or death chances. 

Many poems I wrote during treatment, some turned into a book,

I plan for piece #2 to give an even deeper look. 

I feel privileged to know the world’s standards are not mine,

Following God makes people rich, if wealth you seek to define. 

I’m so glad that even though my health isn’t always stable,

And the average work week is not what I am able,

God uses me still, to write words to encourage and sometimes even speak,

‘Cuz He knows that without Him, I am dreadfully weak.

 

THE END

12.3.10

Find strength in Almighty God.

Find strength in Almighty God.

Delighted Doctor

Email from my bone marrow transplant doctor after his video was posted on my blog October 1, 2013

“Amy: This was the highlight of my day. It’s quite an inspirational site. You are a beautiful writer, with a lot to give the world.

“Own your own days, and name them,

Every one of them,

Or else the years will go by,

And none of them will belong to you.”

–          H. Gardner (playwrite), A Thousand Clowns”

Breath & Shadow magazine

Breath & Shadow magazine

Straight from their website: “Breath & Shadow is a quarterly journal of disability culture and literature. A project of AbilityMaine, Breath &  Shadow is the only online literary journal with a focus on disability. It is also unique in being the sole cross-disability literature and culture  magazine written and edited entirely by people with disabilities. While some literary journals may devote one issue in a year — or ten years — to the disability experience, in Breath & Shadow you will find poetry, fiction, essays, interviews, drama, and other writing that  examines the human experience of living with disability — in every single issue.”

An article I wrote is featured in the magazine’s 2010 spring issue.

Bare means Brrr!

Wear a cap to keep your head warm while you sleep.

Wear a cap to keep your head warm while you sleep.

Have a cap ready to wear at night after you shave your head, in case temperatures drop and your head gets chilled. For a loooooong time I commented that my bare head got cold at night, but it wasn’t until a while later that caps were brought into the equation. At least in my case, baldness + nippy air = not a good night of sleep!

Right On the Money

In my earliest teenage years, deep in the "cancer world"

In my earliest teenage years, deep in the “cancer world”

! Corinthians 7:20 Each person should remain in the situation they were in when God called them.

This Bible verse confirms to me that I should stick in the area in which I have been interminably immersed, & tagged (as mentioned in a previous post) the “cancer world.”

A Saturday for Sisters

My 2 AWESOME Older Sisters & me

My 2 AWESOME older sisters & me

In hindsight, I see clearly how my two older sisters have greatly improved and positively influenced my life in countless ways. As a young girl, “Little Barta” I was often called by my sisters’ friends. I first realized the benefits of being the youngest daughter as I was able to glean driving tips and “what not to do’s” in the car with each one as they learned how to drive (currently, as a result of effects of cancer treatment, I no longer drive) as teenagers. Presently, I’m embracing their shared healthy food knowledge, especially as I try to eat gluten-free, in hopes of being easier on my sensitive digestive system and damaged pancreas due to chronic pancreatitis.

With one, we sometimes get half off drinks at Einstein from 3-5 Mondays through Fridays – I recommend trying the strawberry banana smoothie, frozen mocha or caramel macchiato. Get a large for under three dollars! I can also count on her to help me find the greatest deal on . . . anything. With my other fabulous sis, we have a blast among the always amusing antics of her children and zoom around town together to cross things off our lists – everything’s more fun with the company of another!

Of course, they’ve seen me at my best – for example, graduating college with high honors while I also became a cancer survivor – and my worst – the meltdowns, stupid arguments, and my least favorite part of being female – the too-often turning of little things into dramatic episodes and becoming (unnecessarily) stressed as a result. Still, Little Barta (even though now I’m the tallest of us three) is extremely grateful that as adults we continue with regularly intersected lives that allow endless fun, love and learning amidst the numerous nieces-and-nephews-filled adventure!

Growing up with my sisters (I'm on the right)

Growing up with my sisters (I’m on the right)

PFT = Not For Me

Once cancer treatment is finished, patients are required to have annual health tests including echocardiograms and pulmonary function tests aka PFTs. PFTs involve the patient sitting enclosed inside a small clear chamber and doing all different types (specifically, force and duration) of blowing with you lips securely around a device to measure lung function. Truth be told, it’s not a comfortable test to take and I always dreaded it. 

Several years ago, my Mom and I ran into a mother of a young son also undergoing cancer treatment; we knew them from the hospital pediatric cancer floor and became what I can only describe as “hospital friends.” In our conversation I mentioned how much I disliked pulmonary function tests, and she nodded her head in agreement and said her son felt exactly the same way.

A sort of unspoken camaraderie develops among patients who’ve been around the block with countless cancer treatments. You often run into each other while at the hospital for appointments. I no longer have to tolerate PFTs because one of my many side effects from cancer treatment, facial paralysis, prevents me from being able to close my lips tightly around the testing device. What a RELIEF!

Besides facial paralysis, other permanent side effects include Avascular Necrosis in my left knee wrist, and right ankle.

Besides facial paralysis, other permanent side effects include Avascular Necrosis in my left knee, wrist, and right ankle.