Tuesday, August 14, 2007

Life is a Squeezebox


For the last few months, my life has contracted and expanded more times per minute than a squeezebox.

I'll never forget the day that Paula dropped me off at home after my first week-long hospital stay. I was delighted to be home again, but I couldn't get over how suffocatingly small my world felt. I had given up my job, cut back on my volunteer activities, couldn't garden and wasn't sure how physically active I could be. I sat there thinking, "What do I do now?"

Just a week before (I'm reminded from an earlier blog entry) I had hosted a party for more than 90 friends, selected paint colors and window coverings and coordinated the painting and installation, expedited a second opinion through MD Anderson, and tied up thousands of loose ends at my job.

Of course, that sinking "What do I do now?" feeling didn't last long. My prior life had contracted, but, as much as I hated to admit it, my energy level began to shrivel as well. At the same time, there was more room for friends and family, social activities and an obsession with food. My life was full.

This went on through each round of Hyper CVAD. My energy level would contract and then quickly expand and my activities would go through the same shrinking and growing process.

Today my emotional and physical energy far outstrip my activity levels. I'm looking for new challenges and stimulation. For the first time, I'm feeling restless.

But this feeling won't last long. There's talk that I'll do another round of Hyper CVAD if I successfully harvest enough stem cells. After that, I'll go through two weeks of out-patient radioimmunotherapy. And once I'm in the hospital for my stem cell transplant , I'll receive a mega-dose of chemo that will shrink my blood counts down to nearly zero. Until the transplant brings those levels up, my life will revolve around a small hospital room, my laptop and immediate family members who are allowed to visit.

After a few weeks, my blood counts and energy level will start expanding again, and I'll no doubt curse the smallness of my world. But that world will once again expand.

Expand, contract; expand, contract; expand, contract. It's the rhythm of life of a cancer patient.

12 comments:

Margaret Finnegan said...

And through it all, we'll be reading your blog and gaging how we can help, how we can stay out of your way, and hoping that you not only recovery quickly, but that you start writing about food again. I love when you write about food.
Margaret

Mark and Dee said...

Happy Birthday Susan. Wishing you many many more to come and a most wonderful day today! No word from Roberto, but it's the mystery and anticipation that keeps us hooked!
All our love to a woman who's wit, wisdom and energy far exceeds our own. Mark and Dee

Anonymous said...

Happy Birthday, Susan, and greetings to all of your blog pals!

Here's an idea for a challenge that will capitalize on your interest in food. I know you're a fabulous cook and like to experiment in the kitchen...how about developing a recipe to enter in the LA County Fair? Check out their website -- it's not just apple pies anymore! I'm planning to submit a recipe for the Spam cook-off!

Have a wonderful day!

Barbara

Anonymous said...

Happy Birthday, Susan, and greetings to all of your blog pals!

Here's an idea for a challenge that will capitalize on your interest in food. I know you're a fabulous cook and like to experiment...how about developing a recipe to enter in the LA County Fair? Check out their website -- it's not just apple pies anymore! I'm planning to submit a recipe for the Spam cook-off!

Have a wonderful day!

Barbara

Karen said...

Well I've found that, as I age, the only things that constantly expand are my waist and hips.

In your case, the seeming contractions are really "expanding", because you have the rare talent of being able and willing to constantly explore and digest your experiences, transforming them in the process into a wider and deeper world-view. You're like a passenger in coach on an airplane -- squeezed into a tiny space for the moment, but only so that you can jump out in a new, wider world when the temporary passage is complete.

You keep on truckin', girl!

Love,
Mrs. Duck

SAMO Calling said...

Susan! Happppppppy Birthdaaaaaaay!
So, you're still ahead of me in the birthday game, eh? Ah, makes me feel young. Enjoy marking off another birthday - the day passes fast - so put on the birthday tiara, gather up the wishes, collect the gifts, eat the cakes, and of course the read and re-read the comments. I raise my glass in toast to another year of friendship and birthdays! Will you be receiving group birthday guests this weekend?

BTW, I've been out of town for a few days. Nothing exotic though.
I just rec'd your fleece jacket in today's mail. Just in time for the heat wave.

Paula Johnson said...

Happy birthday to yoooooooou!

How was your birthday lunch at Larkin's?

suzy keleher said...

Happy Birthday, Susan! "Sheriff John" used to sing on a kids' tv show in the 60's: Happy Birthday to you! You're another year older today! A little birthday cake was spinning on a turntable while he sang it. And then we'd drink milk and eat peanut butter and jelly sandwiches with him. Can't we go back to those days? Hello all you blog way cool commentors: please read my comment on 8/13 comments! Love, Suze

Mathews Family said...

Happy Birthday! We love you!

cgfryling said...

Happy Birthday Susan with hugs and best wishes from your PA friends( and now North Carolina too). We think of you often. Much love, Carla, Jim and Alex

Emmy said...

Happy, Happy, Happy Birthday Susan!

Carolyn H. said...

Oooh, in regard to Barbara's suggestion, in 1987 my husband, Bruce, invented a unique corn muffin recipe and entered it in the Los Angeles County Fair. He won a blue ribbon AND $2.50 in prize money! His recipe is printed on page 40 of the 1988 Award Winning Recipes Cookbook published by the Dair.

For those of you who don't annually buy the Fair Cookbook, here's the recipe. Easy and delicious!

Lemon Yogurt Corn Muffins

3/4 c. flour
1/2 c. corn meal
1 1/2 tsp. baking powder
1/4 c. sugar
1/4 tsp. salt
2 Tbsp. melted butter
1 c. lemon yogurt
1 egg

Mix dry ingredients in large bowl. Mix together wet ingredients and then blend into dry ingredients. Spoon into muffin pan lined with papers. Bake at 400 degrees for 20-25 minutes. Makes 12 muffins.

Give it a try!
Carolyn