Ebb & Flow

There is a natural ebb and flow to this disease.

I know this intellectually and I celebrate the ebbing.

Days with no fatigue.

No autoimmune issues.

No b-symptoms.

But then WHAM, the dragon hits again.

On the good days, I nearly forget that CLL is lurking.

The recent three weeks have been difficult with all the associated issues that a disregulated autoimmune system bring:

fatigue,

gastroenteritis,

migratory dermatitis,

persistent, painful mouth sores.

Tomorrow I see Dr. Bengston at Dartmouth Hitchcock Medical Center. Copies of the excel spread sheet that I use to document autoimmune and b-symptoms was mailed a week ago along with a list of questions for discussion at our meeting. I also proposed that we look at returning to the high dose immunosuppressants used last year for AIHA. One side benefit of that treatment was a knocking back of the autoimmune sequella for about about eight months.

Like The Lillies in The Fields

I love June.

The cool mornings,

the warmth of the noon-day sun

comforting breezes

the riotous color of spring gardens. . .

Our little side garden is just popping now.

Today our very first poppy appeared, tall, blood red and beautiful

surrounded by 3 foot Asiatics that will be next to unfurl their petals.

The little garden is hardy:

it survived the unseasonal winter warmth

and late cold of May that was followed by lots of hard rain.

It survived

persevered to thrive:

first, the daffodils

grape hyacynth and tulips

now poppies and lillies.

I want to be more like the flowers in my garden.

Withstanding the unexpected

Celebrating days of strength and energy.

I want to learn to accept the days of fatigue and fever

mouth sores skin eruptions intestinal pain

when I haven't the energy to work, to play, to cook or to eat.

It doesn’t matter why something happens.

It doesn’t matter why something happens.

Why you got cancer or why you lost your hair
or why you got into a car accident.

What matters is what you do with it.
What matters is how you use it.
What matters is getting your life back.

And since all you have to work with is who you are
and what you’re given,
you might at well use them.

We are more than our hair, our faces, our bodies, our relationships.
But we will never know that
until we understand the images
that keep us from remembering ourselves.

When they are recognized, they dissolve.
And when they dissolve,
we become that much freer
to be the vastness of who we are.

Geneen Roth

CLL? SLL?

Over the last 6 or 8 weeks, I had been asking questions such as: What is a small clonal population and what does that mean? Why are my counts (WBC & ALC) in the normal range? Without lymphocytosis, can this be CLL? If not, then what is it?"

I requested quantitative reports from Beth Israel Deaconnes Medical Center in Boston where the diagnosis was done last summer. They were waiting for me when I returned from Canada and I discovered some answers to some questions:

• The bone marrow biopsy/aspirate showed 33% lymphocytes -- that answers the "small clonal population" question as according to MD Anderson, "lymphocytes >30% are diagnostic for CLL.
• The flow cytometry studies showed the "presence of a Kappa restricted CD20 dim, CD23+, CD5 B-cell population that is immunophenotypically consistent with involvement by chronic lymphocytic leukemia/small cell lymphocytic lymphoma."
• CD38 expression is not detected (and that is a good thing!!!!)
• CD5+ B-cells express ZAP-70 (not a good thing ---- but ---- it could be a lab error)
• Molecular cytogenetic - four DNA probes -- all in normal ranges (another good thing)

So here is what I now understand: CLL and SLL are biologically and morphologically the same disease but present differently: CLL in the blood and SLL in the lymphatic system.

Scenes from the Ontario CLL Conference

Larry and I first heard about the Ontario CLL conference in the deep of winter and immediately decided to attend. It was to be the first patient-run meeting on CLL. The conference was the brain-child of Deb Baker who was joined in the effort by Elizabeth Locatelo; they gathered friends and cohorts into working groups, solicited funding and support; successfully approached world-class physicians and researchers in the field of blood malignancies; and negotiated space in a five-star hotel/spa and conference center.

And they were on.....and running.

Deb Baker told me that she was dreaming in black & white
but that Elizabeth Locatello was dreaming in full color!

When opening day of the conference came, there were over 250 participants registered. The meetings were chaired by Dr. Ronan Foley and international presenters included: Dr. John Byrd, OSU/Columbus, Ohio; Dr. Terry Hamblin, England; Dr. Susan Leclair, UMASS Medical School/Dartmouth. In addition, prominent medical professionals from the Canadian scene were there including: Dr. Graeham Fraser, Dr. Sagar.

These lovelies await the traveler as s/he enters the White Oaks. There are four of them each one representing a season. At night pillars of candle light flicker in tall glass vessels around them.

The White Oaks Resort is elegant & luxurious.

The conference meeting space was more than comfortable. Hotel staff were attentive. The facility sported squash courts, tennis courts, fitness rooms, a pool and a full-service spa, as well as a four-star dining room. Surprisingly, there are statuary, interesting pieces of art and some exceptional pieces of art-furniture here and there.

Yes. These really are chairs. With matching glass tables. Positioned in front of mirrored walls and scattered on landings throughout the hotel.

But more than gaining knowledge and acquiring state-of-the-art information on CLL research and clinical trials was the opportunity to feel part of something......to feel less alone......to share the 'dragon' with others who alos live in its grip.

I have been home from Canada for five days. I returned very tired and just didn't have the energy to get these images ready and my thoughts in order. I have yet to begin the task of re-reading the material I took from the conference. That is next on my agenda.

What's in a name?

My name written in Chinese.
Patricia.

I have been struggling with the names of things lately. Especially medical names. And this has led me on a small journey of discovery. The process began when my hematologist said, 'Don't look for peers in this disease. Your CLL is atypical.' I didn't ask follow-up questions then but later her remark began to peak my interest and I wondered in what ways it was different.

Well, one certain difference is that my diagnosis came from the severe anemia that hospitalized me in July and was later termed autoimmune hemolytic anemia (AIHA). Only about 10% of people with CLL present initially with AIHA although about 30% of those with CLL are at risk for it throughout the course of their disease.

I have a bundle of autoimmune issues that are non-hematologic but hematologists at Beth Israel and Dartmouth medical center have said these are 'probably' related to the CLL which 'corrupts' the immune system. But in reading on the web, I came across something written by Dr. Hamblin of England, one of the international lights on this disease, who wrote that non-hematologic autoimmune complications are rare in CLL.

The diagnostic report from Beth Israel stated that I was 'hypogammaglobulinemic' -- low immunoglobulins. For me, the IgA is low: only 47 (normal reference is 70-640). More reading on the internet yielded this: 'hypogammaglobulinemia is associated with complications in the progress of the (CLL) disease". For sure, it explains why I have that 'bundle of autoimmune issues' like large multiple painful mouth sores and chronic intestinal problems.

"AHIA and hypogammaglobulin do occur in the mutated subset, and in our experience hemalytic anemia maybe the presenting feature of low-count, stage 0 disease." Kay et al, 2002

In Boston, a flow cytometry test was done and my cells were found to be ZAP70 positive. However, there are many false negatives and false positives in this test has procedures have not been standardized or as David Arenson (www.clldiary.blogspot.com) says, the 'kinks' have not been worked out yet. Most experts agreee that the only laboratory where one is certain to get an accurate reading is UCSD.

Another test, the B2M in July was 2 and in March it was 3.5. Some experts believe that anything over 2 heralds a more aggressive disease. Other experts say a number of 4 is the indicator for a more aggressive disease. Others disagree. Still others say it not indicative of CLL at all. But there it is, increasing.

All winter long, I have experienced frequent and episodic fevers that run from 99.5 to 100 with no alteration in the white blood count. I have night sweats (but not drenching) and day sweats occassionally and episodically. And fatigue that can put me in bed for one or several days at a time. All three are 'B-symptoms'.

But the real ringer is that my CBC reports stay within normal ranges in term of white blood count and absolute lymphocyte counts. Typically, one would expect to see rising counts. Over the last eight months since diagnosis of AIHA, there has been consistent evidence on the CBC (LDH and reticulocyte counts) that I am still hemolyzing red blood cells -- but the balance is holding and I have been off steroids since October.

"The lymphocytes in the blood are part of the total lymphocyte mass in the body; they circulate through the bone marrow, spleen and lymph nodes. In CLL, they have derived from a single abnormal lymphocyte and have taken many years to reach a number that can be detected. The basic defect is a failure to die." Hamblin, 2007

Yesterday, I posed THE question to my local hematologist/oncologist in Portsmouth: could there have been a mistake in the diagnosis of CLL? He agreed that my disease didn't present in a consistent way and mentioned the possibility of "SLL". He wondered out loud whether I should have a re-take of the ZAP70 test and another bone marrow biposy.

I also posed the question to Dr. Hamblin on the CLLC Friends board; he mentioned "SLL".
I laid out my scenario to the membership of the CLL Forum; and several members mentioned "SLL".

SLL: small lymphocytic lymphoma. Not a leukemia because the disease is in the marrow and the nodes. It is the same disease biologically as CLL, treatment protocols are the same. But it is different in that it is not seen in the peripheral blood.

This begins to answer some of my questions.
Of course it also poses a few more.
Does the CLL/SLL difference matter?
Is the natural course of the disease the same or different?
Should I look for a second opinion from one of the 'experts'?
Which one?

Singing with a full voice

Watching the moon at dawn
Solitary
Mid-sky.
I knew myself completely
No part left out.

This image is a page from my first altered book. I worked on it last summer when lack of energy and focus kept me from doing so many things. This project was perfect. It allowed me to play in a new medium, with tiny bits and pieces at a time. It had no heavy lifting. It offered lots of scope for the imagination. It was a very forgiving project.

In October, I entered the completed altered book which I called, "Singing with a full voice" in a small art show; it was on display until January '07. And to my delight, when it came home, there was clear evidence that the book had been read and enjoyed by lots of visitors to the show.

"Last night it did not seem
as tho' today it would be raining."




In preparing this page,
I collaged antique lace
Glued over it and into every little crevice
Painted may layers over the glue
Cut shapes
Created a unique & entirely new surface ~
No longer delicate lace but
Durable
Strong