Tuesday, May 19, 2009

A new day

Please visit my new blog here:

I don't expect to post to "ordinary days: a journal' any longer.

Saturday, March 14, 2009

This is the start of the last week of winter!

Friday, March 13, 2009

Flatter me, and I may not believe you.

Criticize me, and I may not like you.

Ignore me, and I may not forgive you.

Encourage me, and I will not forget you.

William Arthur Ward

Images are small collages originally uploaded by Ordinary Days.....

Make every day a holiday and celebrate just living.

Thursday, March 12, 2009

Curve Balls & Roller Coaster Rides

diagnosis and confusion in '06;
roller coaster riding in '07 with new symptoms, strange maladies and an ever-growing list of specialists;

I got stronger and healthier in 2008 and along the way I shed my patient identity.

What is in store for me in 2009?

I had my 6-month CLL appointment with Dr. B today. I was not afraid; I had no misgivings about what the labs would show: since mid-2008, I have felt stronger and more energetic overall with the exception of a couple of nasty infections and a transitory fatigue this winter. I requested an ad hoc blood draw during the 6-month period between appointments when I began feeling fatigued and breathless and it lasted for several days: I was concerned the AIHA was returning but in fact my labs were fine.

Today, my labs were 'perfect' again and this is cause for celebration. The first defense against the AIHA was high-dose prednisone but in some cases, the AIHA is refractory to the pred and rituxin is brought in to finish the job. I was fortunate; the pred worked for me and the AIHA has not relapsed in two years.

With the news today, I do not need to return to Dr. B for a year. This is wonderful news after nearly three years in which I went from weekly blood draws and appointments that were slowly decreased to monthly. Then every other month, every 3 months, every 6 months.

But we still have unanswered questions and sometimes the CLL diagnosis seems a bit of a moving target and we wonder if:

  • Is the CLL really in remission?
  • Was the original bone marrow biopsy a clonal aberation that will never cause any difficulty ---- was it a "pre-cancerous" clone discovered through refined methods of early detection and because the initial questions of why my red blood cells were being prematurely killed off was not answered until the bone marrow biopsy showed that 'small clonal population of B cells'.

  • Is the CLL lying low, hiding out somewhere in the deep dark depths undetected by instruments?
  • Rare, spontaneous remissions have been noted in the literature and seem to occur in 1% of CLL cases, usually in Stage 1 or 2 and often in the absence of any prior treatment.
Near the end of the first year, when my blood work stabilized, I asked some of these questions to Dr Hamblin, who responded:

"You can have a monoclonal population of CLL-like cells in the bone marrow or the blood that is transient. But when it goes this does not mean it is not there, it is just below the level of detection. If I understand you correctly you had AIHA and at that time CLL was diagnosed. Treatment for the AIHA can induce a remission in the CLL. I have patients on my books who did just that, only for the CLL to become detectable again 7 years later."

I have been Coombs Positive for AIHA since 2006 but recently learned from David Arenson's blog that "Coombs Positive" is not a static situation. Indeed, his positive turned to negative after the AIHA made its last appearance. Today, my Coombs test show positive for AIHA again as it has since 2006. She said that like other autoimmune conditions (Behcet's for example) they can flare, they wax and wane. One can move in and out of Coombs Positivity. So the AIHA is still be a factor and could again pose a life-threatening re-appearance. But one doesn't know when, only if . . . . .
Earlier in my CLL/AIHA career, I had wondered about a link between CLL and other, non-hematologic autoimmune diseases like Behcet's and IBS/IBD. Dr. Hamblin conclusively says NO there is no link. Dr. B feels there may be a chicken and egg kind of relationship between autoimmune diseases and CLL but that it is not yet understood and the question: the dis-regulated immune system caused the CLL? or the CLL caused the dis-regulated immune system? has not yet been answered.

But for now, we celebrate!

And I sing the praises of two of Dartmouth Hitchcock's finest and having them on my team === Dr. B and Dr. R.

Saturday, March 7, 2009

Featherweight with A Mighty Heart

The Featherweight sewing machine was designed and brought to market in the 1930s. It made its debut at the 1933 Chicago World's Fair.

Everyone thought it was foolish to bring this machine to market at the very height of the Great Depression. Who would purchase it? Who had the funds when 25% of the population was unemployed.

But it did sell. Women loved i: it was sleek, pretty and light, weighing in at only 11 pounds. This little machine went forward and in reverse in a perfectly accurate straight stitch: no fancy pants stitching for this little babe. And it was so ingeniously and simply made that women found they could trouble-shoot and fix problems themselves: no need for a repairman.

Singer continued to make this model until the late 1950s without changing a single thing in terms of its operation. They did not add any bells and whistles; they truly left well-enough alone. They only significant change came during World War II when some of the more decorative metal was sacrificed for the war effort.

The Featherweight became the workhorse of the sewing world. There is no better machine for giving a perfectly straight accurate stitch. It came with a small folding table, a carrying box with a handle and some additional tools. About a decade ago there was renewed interest in the Featherweight; it became a "collectible" object and usable, too. They were running as smoothly in the 1990s as they had in the early decades. Imagine! What other tool, instrument or piece of equipment has history such as this?

Oh, I yearned for one. They were selling for about $600 in my part of the world (when it came in the original box and table). It was, however, still possible to find one at a yard sale, flea market, auction or estate sale for little money. That is what I wanted. I wanted to find a perfectly usable Featherweight for, say, $25.00. And I wouldn't quibble on the price. No sirree.

Larry, evermore practical, bought one for my birthday that year. What dream: the guy and the Featherweight. My model was made in 1951. Is shiny black and perfect all through.

It is a prized possession; I wouldn't give it up for anything.
Using the construction I wrote about yesterday to determine personal extrinsic value of an object in your possession, I offer here my analysis, be ever so short and pithy:

1. Does it lift my energy when I think about it or look at it?
This little baby comes with a bundle of HOPE. Its designers and manufacturers were optimistic even in the face of negativity, even while the country was experiencing the depths of the Great Depression. They had hope and hope won out. Where will we find hope in 2009?

2. Do I absolutely love it?
Absolutely. Without question. It has been totally without fail, faithful to me.

3. Is it genuinely useful and do I use it?
The Featherweight is purposeful, useful and dependable; it always does the job it was created for; seldom balks at the work. I use it when I want the best straight stitch. I like using it for machine piecing and stitch-in-the-ditch machine quilting small fabric objects. I don't use it daily, weekly or now even monthly. But I will use again and again. Of that I am certain.

Friday, March 6, 2009

An Embarassment of Riches

We consume. We are a society and an economy rooted in consumption. We see this now more clearly than ever before. If we "consumers" don't spend, have no desire or few resources with which to acquire, the economy falters, then fails. We must be acquisitive, we must desire more and more and more to fill our cupboards and drawers and closets with ever more STUFF.

I recently read about an art student in Finland who used traditional archaeological methods to assess and catelogue her possessions. She discovered she owned a total of 6,126 objects (housed in a relatively small space).

But the most interesting part of the story is her analysis of how often she used each object. For example she listed objects as 'never used', less frequently used; used yearly or month; weekly or daily. Using that construction, she determined that only 1% of her objects were used daily and 24% were not used at all!
Objects used every month - 587
Objects used every week - 401
Objects used every day - 61

84% of her possessions were just CLUTTER!