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!

The Art of Living...Letting Go...Holding On

Three questions to ask yourself when in the act of de-cluttering from My Simpler Life.

1. Does it lift my energy when I think about it or look at it?
2. Do I absolutely love it?

3. Is it genuinely useful and do I use it?

These are difficult questions for collectors and crafters.

Larry is a book collector; I collect antique linen and lace and quilts.

And I am a renaissance woman: I enjoy working in fabric and fiber; quilting and sewing; small 4x6 fabric art and art journals; altered books; knitting; doll-making. So over the years I have amassed a formidable stash of materials, supplies, tools, and equipment.

The de-cluttering of my studio/playroom made me look objectively at my stash. If each object did not pass muster (lift my energy, absolutely love it, am using it), I let it go to someone who would love and use it.

The art of living lies in a fine mingling of letting go and holding on.

The studio is now more efficiently organized but if I were being totally truthful, I'd have to say that this effort was really just the first pass.

There is more work to be done and more letting go to experience.

Thursday, March 5, 2009

When you let go of clutter . . . .

When you let go of clutter you free up space in your life for creativity. You un-block energy that is stuck under and behind the mounds of things. You make space in your life for the things you really love and truly want to have near you.

A few months ago, I pledged to de-clutter my home and pare down possessions. I wrote about it on this blog in October but I haven't updated the process.....until now.

I got to work cleaning my closet and drawers; I made donations of things I didn't need and wasn't using. Clothes that no longer fit and would probably never fit again went in the Good Will bags. My room was neater. I felt better and lighter.

Then I moved my efforts to my studio/playroom. And I will admit there was huge job of work waiting for me there. But undaunted by the task ahead, I went wading through the piles and stacks making decisions about what to keep and what to move along. The decisions got easier and easier. The more that went into the Good Will pile the easier it was to add more to the pile.

Here are some of the results:

This neat little stack of three-ring binders used to be row upon row of magazines taking space on bookcase shelves. Once I got to this phase of the 'de-cluttering' project I saw it for what it truly was: a
of paper that I wasn't using and couldn't efficiently use.

But it is no longer.

Now it is a nice, neat stack of projects and images that inspire me. They're slipped into sheet protectors and organized by project or type of craft.

Oh what a relief it is.

I moved, shuffled, cleaned, organized and made several trips to Goodwill with craft supplies.

One result is this nice neat wall of paints.

..... supplies.....

...... a knitting area .......

.... fabric .....

and pride of place for my Singer Featherweight sewing machine circa 1951.

(The Featherweight is sitting in front of one of my very first quilts.
I learned a lot about color on this project as you can see. )

Wednesday, March 4, 2009

A Day in The Life .... of A Wannabe Knitter

I started knitting a few months ago.
I don't really need another craft but was seduced by all the lovely yarns that are available to knitters -- hand-dyes, wool blends, and mohair and silks, and bamboo and sari waste.

My mother knitted for decades.
When we were children she produced hats, mittens, scarves and sweaters with ferocious regularity. She made fancy argyle socks and celtic-style fisherman knit sweaters that required difficult patterns and lots of concentration.

She typically did her knitting in the evening.
We would all be in the living room after supper. My dad, mom, brother and sisters. The television on. And amid this clatter, she maintained her concentration and produced beautiful items. For the family and for gifts. Never for herself.....

Now, I think I understand.
The knitting was her ticket to another planet, another zone. It took her away from the clatter. She rose above it all, lost in her work; imagining the finished result.

So I took a few knitting lessons at the adult education center in York.

So far I've only produced rectangular things like scarves. But I have a fantasy. I want to make something beautiful from a book called "Knit Kimona". Every piece in this book is fabulous and all are based on traditional Japanese clothing and all are created from simple shapes -- like rectangles.

I chose one fashioned after a traditional short Japanese jacket.
It's lovely and is meant to be knit from European flax. I bought one skein of a deep purply-blue to audition the pattern and the yarn. I want to experience the pattern and see if I like the flax; it feels a bit stiff: I need to know if I want it next to my skin. (I have been told that it washes well and gets softer and softer)

I don't own a yarn winder or yarn baller.

I'll have to wrap the skein around the back of a chair to create the ball. But it is uncommonly long. Too big for all my wooden chairs; too small to go around the backs of my upholstered chairs or the leather chairs. Hmmmmm. What to do?

I'll just lay it out on the table.
I'll carefully draw the yarn out and around my fingers and into a nice tight round ball.

And you can see the result of this ill-fated effort in the pictures above.

I may NEVER get it untangled.

And I can tell you: this never happened to my mother!!!!

Monday, March 2, 2009

One smile can warm three winter months

Look beyond the orchid. Out the window and see the kind of day we had here in New England.

It started snowing yesterday afternoon in fits and starts but by night it was coming down in earnest.

It snowed nearly all day long today but the heaviest snow was really over by mid-afternoon while another inch or two came in the light snow.

So it was another day to work at home on my current project for the school; I rose early and got to my computer early. It was a great day to stay warm indoors. Drink tea. Slowly cook a chili for another day. Make tetrazinni for dinner tonight.

Oh. And the project. That, too.

And now I am listening to Sting playing with Chris Botti and am in heaven at the fabulous sounds they are making together.

Sunday, March 1, 2009

Memories keep calling .... ....

My grandparents lived on the first floor of a neat triple-decker with wide porches and large back garden.

He was Noe Pierre Valois; she was Medora Bond; I think they were a handsome couple. Both were born in central Massachusetts: he in Worcester, she in Holden but they were raised in Leominster and made their home there. Noe's father owned a meat market; Dora's father was a barber.

The Valois family fancied themselves quite 'above' the Bonds: they came to the US directly from France while the Bonds came from Canada.

My recollection is that Noe was rather dour; Dora on the other hand was extroverted and fun-loving; she loved people, parties and dancing. She loved to laugh. Noe was disabled from mustard gas in the First World War and lived most of his life in and out of hospitals; he was only 58 when he died. Dora was essentially the wage earner as the government did not provide disability compensation for WWI veteran's until the late 1930s.She lived until mid-way through her eighth decade.

Noe & Dora's house on Spruce Street was in a neighborhood called, "French Hill", one of several villages that dotted Leominster. By the way, the town is not pronounced: Lem-stah as in the English market town that is its namesake. It is not pronounced: Leo-min-ster as the uninitiated want to say. No, it is Lem-in-ster.

French Hill was populated by French-Canadians who came seeking work in the comb and shirt factories there. They proved to be hard and steady workers capable of keeping up with 12-hour work days, 6 days a week and able built new lives for themselves and their families.

Their social life, family and work life was centered in neighborhood. More specifically around the church. My grandparents home on Spruce Street was only a short walk to Mechanic Street where St. Cecilia's church, school, convent and rectory stood. It was also walking distance to Cluet & Peobody on Water Street where my grandmother sewed men's shirts for the Arrow Shirt Company. In their house on Spruce Street, they raised three sons, Robert, my father and Norman and Richard. This was also the house that sheltered my mother and I during the war years. And, they were still in that house in 1954 when my grandfather died.

My Memories of their 'parlor' or 'front room' are dim. I don't think I ever sat in there and suppose it was saved for some 'state' occasions but what those might have been eludes me. This room was separated by pocket doors from a sitting room that doubled as an office for my grandfather. Here my memories are more vivid. My grandparents had two "easy" chairs in this sitting room, for reading and watching their floor model TV with its tiny screen. By my grandmother's chair was her crochet bag with the current pattern, yarn and needles. From this barkcloth bag emerged socks, mittens, hats, afgans and scarves with a ferocious regularity. Later, her hands deformed from arthritis, she continued to crochet, saying she could not stop, would not stop crocheting for fear of her hands crippling.

Of paperdolls & losses. On the floor by my grandfather's chair was a mahogany-colored basket. It was always there and held an ever-growing collection of Betsy McCall paperdolls that he meticulouly cut for me from the Sunday paper; I loved him for this and so much more.

I loved Betsy McCall; her pretty clothes and accessories always gave me something new to play with when we visited during the week. Often I wondered what became of that mahogony-colored basket and my paperdoll collection. I was after all only 10 when he died. But I have no recollection of them after his death.

My grandmother did not stay long in that apartment after his death even tho' it had been her home for nearly a quarter century; perhaps she moved in haste. Perhaps her married sons and daughters-in-law who helped her move to a tiny place were unaware of the real value of those paper dolls......of how precious they were to me.

My grandmother's jewels. I was often invited to spend the night with my grandmother while she lived on Spruce Street. I loved snuggling down in her great and cozy bed. I loved waking to the sound of her slippers - her 'chausettes' - glide across the floor while she moved about the kitchen preparing breakfast. She always gave me hot cocoa and a 'folded-over' toasted marshmallow sandwich---for which there was no equal in my life!

Her jewelry box was filled with costume baubles and a few pieces of 'good' jewelry. It never ceased to beguile me and I would ask if I could 'clean' her jewelry box which was my way of asking for stories. She allowed me to empty the contents of the box and told me stories about who gave her those earings or that bracelet, or on what occasion a certain piece was worn. In that box was a lovely saphire ring that she always said would be mine 'some day'. I don't know where my ring got to........or who has it.

Ice cream cones and cotton candy. Their house was three or four doors from the corner on which stood Giguere's Drug Store. In my child's eye, it was a large place, semi-dark, deep, cavernous and always cool . It had a very distinctive smell -- clean but pungent with a hint of chemical. A trip to Giguere's Drug with a nickel to spend was a glorious and grown-up event to purchase a vanilla ice cream cone.

My grandmother's little black book was for recording every expenditure: a nickel for this; a few cents for that. She loved ice cream. And she smoked. The little black book kept on shelf over the stove was meant to note each of these innocent purchases.

I'm not sure whether I remember this or if it was told to me later but this accounting for such small daily purchases was not a task invented by Medora. No. My grandmother would never have dreamed up such a task for herself. Although she was the main wage earner, she handed over her weekly wages to my grandfather. He made all the decisions about what to spend,how much to save. It was he who demanded she account for every penny.

Others have called Noe controlling; I don't know this from personal experience. But I do remember the following story of .......

A 1949 Plymouth of which they were quite proud. They purchased it new for $1300 and it was always kept in pristine cleanliness inside and out. I recall its interior: a 'picky' woolly gray upholstery that was wicked to sit upon on a hot summer's day.

Well, it happened on a particular summer day that my grandfather invited me out for a ride to the nearby amusement park. We were to travel by car, his Plymouth. I remember it so clearly and suspect it was a rare and unusual event as he was unwell most of the time. Perhaps on this day he felt strong and happy and generous. Perhaps he just wanted to offer his first grandchild and only granddaughter a summer treat. Whatever the motivation, when we got to the Park, he offered me a cotton candy.

Cotton candy!

He presented me with the great-gooey-sweetness-on-a-paper-cone. Ahhhhh. I sat in the back seat planning to savor the sensation of sugar melting on my tongue.

What happened next is not clear in details. But I do know that somehow I got cotton candy all over his spotlessly clean picky gray back seat upholsery. Now, I don't recall his words but I do remember his displeasure. His impatience and frustration. Sadly, he probably only had energy for the ride and loved the idea of a treat but was unprepared for the clumsiness of a 6 year old over-excited little girl.

Veteran's Hospitals
My grandfather was not an every-day part of my life. He was wounded in the first world war and spent the remainder of his life disabled from the mustard gas and was often in veteran's hospitals for weeks and months at a time. A typical Sunday for my father, mother, grandmother, brother and I was to visit him in whichever Massachusetts VA hospital he was in at the time. The trip usually involved Sunday dinner in a restaurant. My parents tried diligently to make these trips fun for brother and I by planning to stop at historical sites -- Bunker Hill Monument; Old Ironsides; and other important places.

Then he was gone
The phone ringing. A lot of late night activity in the house. My father sitting on the last step of the stairs leading to the second floor of our house on Vine Street. Head in hands, my father is weeping. It's frightening; I've never seen him cry. I learn my grandfather has died. He was only 58 years old.

I wasn't allowed to say goodbye; I was "protected" from the rituals of death. I don't have a clear last memory of him.