Beating Back Cancer: God

Monday, May 10, 2010

The Gift of Cancer

If you are young--or young at heart--chances are life moves in small steps slowly forward, but in your mind's eye, the pages of memory leap, cavort, and skip quickly, without respect to time or borders. Special holidays always evoke our collective memory, as we sort and shift our way through the past with loved ones, present or past. Yesterday, our collective memory

spanned 328 years, 4 people, and 3 generations as we celebrated Mother's Day at Little Italy. The ambient noise, the aromas, the mixed languages, pure Italian and dialect, speaking with hands and hearts, we wound that VHS fast forward and back, sifting through yesteryear.

In the wending ways of the mind, somehow we returned to my childhood and my pet puffin. Why puffins, I have been asked since my Talking to God post, and now again by family. It was, after all, so long ago, and Mother held the answer. Don't you remember your favorite poem. I did not. Reciting from memory, my Mother delivered, pitch and intonation perfect, my childhood poem. Because I wanted to freeze frame the moment, I asked my brother David to send me a digital copy (why didn't I think to record it with my Droid). Here it is, the reason I found my closest early childhood friend, my Puffin.

There Once Was A Puffin

by Florence Page Jaques

Oh, there once was a Puffin
Just the shape of a muffin,
And he lived on an island
In the bright blue sea!

He ate little fishes,
That were most delicious,
And he had them for supper
And he had them for tea.

But this poor little Puffin,
He couldn't play nothin',
For he hadn't anybody
To play with at all.

So he sat on his island,
And he cried for awhile, and
He felt very lonely,
And he felt very small.

Then along came the fishes,
And they said, "If you wishes,
You can have us for playmates,
Instead of for tea!"

So they now play together,
In all sorts of weather,
And the Puffin eats pancakes,
Like you and like me.

A day later, I still reflect on small things, the why of memories. Am I who I am because of past and present, fused to play and replay as I touch the future, that piece of time that we never seem fully inside of, always reaching toward. Am I a composite of my DNA, of nature + nurture. Or am I, are we all, what David Shenk suggests in The Genius in All of Us, what we choose to be.

In childhood, which lasted, like Santa Claus, almost into my second decade, I was almost overpowered with love. The only grandchild, niece, the only everything for 9+ years, I was lavished with love, encouragement, entitlement, authority, affection. Was that the making of me.

What is the essential I of us. My daughter Debi showed horses because I did. Is there a llama in her future. Does it matter if it's her choice. Would I be different had I less attention, a less devoting nuclear family. Or if I had an organ transplant. Or cancer. A different heart. Different parents. My two children are adopted; I am their third birth certificate mother. And I love them to pieces, but sometimes fail to show them the intensity that I knew from my own childhood. Often they wonder about their medical history, and until I got the gift of cancer--and strange as that sounds--it is what I choose to call it, I had no answers to some of my life's still small but lingering questions.

What I have learned is so simple. None of all this matters. Your DNA, your nature or nurture (throw that out the window, as Shenk suggests). Knowing as far back as I choose to research, my family history will not indicate nor prevent illness. Nor will it create happiness, just happy memories. They are similar, but not the same.

Now I tell my children, grandchildren and family just to be, the richness, the organic wholeness of who they are and who they want to be. I tell them to live with fullness, make healthy choices. To listen to their bodies, to take care. To rest, to run, to leap, to cavort in the present, enjoy the past for what it was, because once gone, if not good to great, it cannot help, only hurt. I tell them to learn to enjoy life lists by knowing the grace of small things, not the leaping lizard list of global travels with the rich and famous, daunting I-want-to-do-and-have lists. I ask them to slow down, to live in the moments, get annual and thorough medical tests. Most of all, I tell them to be themselves and just keep living. And I tell them how much I love them.

Saturday, April 17, 2010

A Life Sentence

"Think of it as a disease, like diabetes, that you live with, die with, but not die of." Thus spoke Sunita Nasta, MD, Non-/Hodgkins Oncology Specialist, and my newest physician caregiver. Never was a diagnosis better received. In short, I got a life sentence, a long one (that's me on the left, walking the white llama). And it was a long time coming. At various times, I amped up my conversations with God and evaluated my life, dispassionately, to learn that by my standards I had lived well. Now the challenge might become dying well. Was I up to it.

And that's where the hand of God, the work of faith and prayer, serendipitous intervention, or just old-fashioned luck plays its hand. Call it as you see it, but for me, it was a Padre Pio miracle.

Non-Hodgkins Lymphoma, Grade 2, Stage 3A.

That's what I have. You can conduct online research, and I did rigorously, but I quickly discovered that the Internet fortunately is still not as smart as my specialists at Perelman Center for Advanced Studies. Every aspect of my treatment impressed and reinforced my decision to choose the University of Pennsylvania Health System

Here's why.

When was the last time a physician asked you how you prefer to learn? Beginning with Tahamtan Ahmadi, MD, Oncolocy Fellow (past residency and now specializing), I was given the preference of medical discovery in my learning style. As a teacher, I totally understand the value of pitching to a learning modality, but was surprised to find that level of delivery in the medical field. Bravo!
"Would you like me to deliver my spiel, or would you prefer to ask me your questions first"? What a tag team! Being given choices counts with me, since I have grown up surrounded by specialty physicians in my neighborhood. Finding that same compasssion and concern, especially at a large facility in a larger city exceeded my expectations as Dr. Nasta greeted my husband and me as treatment sharers. Despite the expansiveness of the facility, I felt like I had returned to my childhood roots, where you could go next door and have tea, treatment, wonderful conversations, and confidence in your returning wellness.
Does your treatment facility have state-of-the art equipment? Why be referred to a cancer center that has the best diagnostic and treatment equipment when you can begin beating back cancer from the beginning by betting with the best.
What awards and accolades has your treatment center achieved? Is it wrong to want the best. Cancer care is a competitive industry and each strong facility has a piece of the market share. So, for me it comes down to ratings, rankings, research, and survivorship. And the doctors.
Are your doctors at the top of their specialty? Don't be a passenger in your life; be the bulldozer. Make your choices carefully, and then make sure the fit is good. Mine are, and in working toward longevity, that means everything.
Is your cancer center connected to a University Medical School? Field research and clinical trials are important to my decision-making. If need be, I will be a risk-taker. When life is the endgame, I want to be on the cutting edge, before the edge is cut. And should all else fail, I want to be positioned in a place that can look at advanced medicine alternatives.

Like so many people, my father was not so lucky. He did not get a life sentence, but we did manage to give him two years he might not have lived had I not done research at UPenn's biomedical library. Throughout my life, my father was my anchor, a strict but loving parent, someone I would forever miss. As I watched his life wane, I knew that should my time come when I would have to beat cancer back, I would learn from the choices he did not make.

I think I have. But then, I got a life sentence.