CLL Redux 2 Years Later

I keep returning to early summer, 2006 and the path I have walked since then. It was then that Dr. Miller at Beth Israel/Deaconess Hospital asserted with professional confidence -- no, with arrogance. With definitiveness. With bravado. That I have chronic lymphocytic leukemia. There were no other answers for the state of my bone marrow at that time.

And the result? I became sick. Sicker than I was already. I became a patient. A leukemia patient. I spent the next three or four months: out of work, weekly blood draws and hem/onc appointments. Feeling bad. Worse with prednisone withdrawal. Hard to tell the difference between the disease and the treatment and the withdrawal symptoms.

I didn't know anyone with leukemia -- well, I didn't know any living adult with leukemia. I knew of the granddaughter of a co-worker who had an acute leukemia diagnosed at only 18 months. I had a friend who died -- probably 35 years ago -- from adult onset acute leukemia. But that is it. So I heard the words. And then I slipped down on a deep dark whole. When I emerged, I was a 'patient'. I now had assumed new labels to describe me: 'Sick'. 'Cancer/Leukemia Victim'. The diagnosis put me through a whole host of emotional changes: I was sick;I felt sick. I could name my malady and it was frightening: I felt I would die young: I had bad 'markers'. I was 'fragile' and prone to infection. I worried about being in school with young disabled kids.

Then I started to read the words of other CLL patients: the scholarly words of people like Chaya (CLL Topics) and David (http://www.clldiary.blogspot.com/). Brilliant minds. Important stuff. I joined several 'boards" --- like the "digest" "cllforum" and "cllcfriends". I googled. I scoured the literature. I understood very little; my right brain rebelled mightily at these scientific, medical terms and concepts. But I persisted.

And then spring came. 2007. I finally began to understand some of the words and concepts that had evaded me previously. I read my labs and compared them to the typical 'cll-er'; I found no match.

Did I have CLL?

I posed this question to bigger lights and brighter minds than I will ever be: Dr. Terry Hamblin, for example, who said that it was not unusual for early stage/low risk CLL that presents with autoimmune hemolytic anemia to be knocked back by high doses of prednisone. And then, my doctor, Elizabeth Bengston at Dartmouth Hitchcock Medical Center did a re-take of one of the diagnostic tests (flow cytometry) and found no CLL in peripheral blood.

I did have a host of autoimmune issues that had plagued me for years; I had begun to attribute them to the CLL. But in summer 2007 these were 'knocked back' by entacort and prednisone and colchicine thanks to Dr. Rigby at Dartmouth who was unafraid to name my other beast "Behcet's Disease".

So, where am I now nearly two years since the Beth Israel diagnosis? And what has the diagnosis meant to me?

Well, first, it gave me a new identity: patient. It labelled me 'sick'. But I am not these words. And it took nearly two years to get back to me: I am Pat. Spiller. Woman. Grandmother. Daughter. Mother. Friend. Advocate. Artist.

I no longer wait for the other disease-shoe to drop. I no longer read the current research; I no longer keep up-to-date on the newest and best CLL treatment methodologies. I don't even think of myself as someone waiting for the beast to strike again.

I don't even know that it will.

I don't know.

Who can say?

But I ask: could Dr. Miller have given me the CLL news differently? What if he spoke slowly. What if he hadn't been half-in and half-out the door when he told me? Would it have made a difference to my frame of mind, if he had used different words. Would I then have come to use other words about myself and my medical condition? Would it have taken two years to come around to feeling whole and healthy again?

What I Didn't Learn in Kindergarten

It was summer, 1958. I was 13 and about to enter St. Bernard's Central Catholic High School as a Freshman in September.

All that summer and for years to come, I made for the beaches .... or at the very least the sunny backyard ... oiled my body with lotions and potions guaranteed to burnish my skin to a nut-like brown. At the local beaches, I spread my blanket, arranged my gear and prepared to read and watch the boys. Well, wasn't that the purpose of the tan? To get the look, to catch a boy.

Sunbathing was critical to getting the look of summer. You know, that dark and luxurious tan that played so well against summer whites: shirts, shorts, and sundresses.

Here's an excerpt from an article in the Los Angeles Times that ran on July 20, 1958 entitled, A Warning To Sunbathers:

"For most of us sun-bathing is not only pleasurable but beneficial as well. There are an unfortunate few people, however, who sustain some degree of damage to their skin as a direct result of excessive exposure to the sun. This damage for the most part is temporary......"

Hmmmm. Temporary?

Or perhaps we were just preparing for a later life phase:

Solar Keratoses.

Who knew?

Why didn't they tell?

For these, I am thankful

For trust & hope

For Joy
And the beauty in each day

For Larry

Who has wooed me

with lilies

For Retreats
On Star and Appledore
& New Harbor, Maine

For Music
That soothes
comforts
lifts my spirit
opens my heart
moves my body

For Books
To fall into
fall in love with
& read again
& some again

A Good Samaratin? I guess it depends on your perspective

Strange weather in New Hampshire. The the northern tier -- what we call the 'North Country', is under a flood watch this evening. But a "heavy snow" warning begins for them at 4 AM through to 9 PM on Friday. Such is the diverse beauty of New England.

On the coast today, it was dark and gloomy with frequent and periodic heavy rain most of the day. Temperatures hovered close to the 60 degree mark -- a little warm for the season.

I had a salon appointment after work and arrived just in time for another burst of hard rains. Parking as close to the door as possible, I opened my umbrella and made for the door.

A young mom was walking toward me from the mall pushing a carriage with a toddler. She had no cover from the rain.

I offered to cover her with my umbrella and stay with her as she walked to her automobile.

A pretty ordinary scenario? Don't you think?

Well, the young woman only reluctantly allowed my assistance. I was prepared to stay with her and cover the child while she opened the doors and lifted the child into the car. But I was quite summarily dismissed. And I realized only later as I walked away that she was suspicious of the assistance.

So I wondered: what must your life be like if you cannot trust a 5 foot, 63 year old grandmother, who looks like this:

Oh. You caught me. I wasn't wearing my crown.

Behcet's can be lonely place

I don't know one single person who shares this malady.

In fact, its prevalence in the US is about 1 in half a million people.

Tonight, however, I joined an internet 'chat' in-progress, for people with BD and very quickly felt affirmed and less lonely.

In truth, there were less than 10 people involved in the 'chat' but those ten represented an amazing geography: one participant is from Greece; the moderator is from Northern Ireland; and several others are from the New York, Virginia, New Jersey and I think Wisconsin; and there were a few others whose location I didn't learn.

'Chat' participants were warm and welcoming. Not unlike what I have come to expect from the CLL Forum and CLLC Friends: generous, friendly, encouraging, intelligent.

One of the interesting aspects of the nearly 2-hour online event was the voluntary translation going on. A woman from New Jersey was translating from English to Greek and Greek to English for the gentleman from Greece.

This was not her job. She is one who shares Behcet's and I feel certain she joined the 'chat' for her own personal reason.

Yet it was just done.

Because it was needed.

Because she was there and had the skills.

I'll Be Seeing You

July 22, 1945

Germany

Dearest,

I am on my way back to camp. I'm almost there . . . . . I've been in (this) place for two days . . . . getting lots of rest and good food.

How are you, darling . . . . And Patty?

As for me, I am in the best of health.

I haven't heard anything about going home but it won't be too long now, I hope.

Write often, darling.

I love you with all my heart.

And hope to see you soon.

Love and Kisses, Bob

PS.
Give Patty a big kiss for me.

I love you, Dot.

Below the body of this short letter is the admonition to:

REPLY BY V-MAIL

They were so young, those WWII warriors. He was only 24 when he wrote this letter. They were married in 1942 but there wasn't much time for them to be together, to know each other. The war was on; he was married in his uniform.

My father and his two brothers, Norman and Richard, fought the 'good war'. His father, Noe Pierre, was a casualty of WWI and spent most of his adult life in and out of veteran's hospitals suffering the effects of mustard gas. Noe was a staunch advocate for returning soldiers of the WWII and worked tirelessly for them when he was able. He died when I was ten but I have such clear memories of him in the lead automobile heading up the Memorial Day Parade in our Massachusetts town. Military and patriotism were important themes in his household.

During the war years, my mother and I lived with my paternal grandparents. I was the first grandchild and doted on and probably spoiled by my mother, grandparents and youngest uncle, Richard, who was still at home when I was born. I'm told that he would gather me into his arms, take me into his bedroom, prop me on pillows and tell all about his latest 'girl' and his date for the evening.

I recall a room that functioned as an office for my grandfather with a large desk and world globe. My mother said that he also had a large map of the world over his desk on which he plotted the advance of the allied forces. He had a bald, shiney head and I loved the way it smelled. I never smelled that fragrance again.

Hormonal Imbalance

We got tickets for the Four Bitchin Babes this Saturday evening at the Music Hall in Portsmouth -- a show we really looked forward to as we hadn't seen them for a few years. Their new show called, Hormonal Imbalance, was a near-sell-out. By the time we decided to go there were only great single seats left. We took the singles reasoning that after 20+ years we could actually be apart that long.
Hurrican Noel was rushing up the east coast from North Carolina on its way to the Canadien Maritimes. Reports and storm warnings called for all-day rain, high winds and rough seas. It was a blustery night but by the time we were leaving for the show, the storm had been down-graded to a tropical storm (another indication of global warming? seems late for us to be getting a tropical storm!)

I felt it was a great night to curl up with a book and a cup of tea rather than brave the wind and rain from parking garage to Music Hall. But we had already paid for the tickets; we went to the show which was, indeed, a full house with a pleasantly appreciative audience (mainly women).

This foursome is not the original Four Babes; only Sally Fingerett (upper left in the photo) was an original Babe with Christine Lavin, Patty Larkin -- and one other, whose name escapes me at the moment. But these four babes can sing. And write. They are called 'cross-over folk' artists. Their harmony is supreme. They give funny, poignant, heartfelt, high-energy performances.

The Babes gave a nice nod to the men in the audience giving them lots of kudos for bravery! It was a female, night-out for sure.

Their patter and their tunes really poked fun at female angst. One of my favorites was, The Boob Fairy Didn't Come For Me, and poked fun at women who are never satisfied with their hair, face, hips, legs, butts, lips, ears, and-you-name-it-we-probably-hate-it!

Another tune that brought the house down was based on 30,000 pounds of bananas -- but the truck driver in this tune was carrying 30,000 pounds of VIAGRA -- which, on impact, got into the town water supply.

These Babes are on tour together and individually.

I enjoyed the foursome; I would hear each one on her own as well.

Check them out here. You can play their video and listen to tracks from the show's CD.