Privacy Is Dead Because Me And James Gilbert Said So: Edward Bobb

Here we are, 'we' and our shadows! 
Someday, sooner than for most children, my daughter's shadow will be alone.

I have stage IV Cutaneous T-Cell Lymphoma.
Well, you didn't think that I've been a slow blogger because I don't like YOU, did you? 
Only pain keeps me from sharing about our Cape Coop, I promise.

In celebration of their 40th anniversary,  Walker + Associates, a large and successful advertising and public relations firm, is giving 45 hours of their expertise to a worthy nonprofit organization. The way we vote for a nonprofit is by  a nomination- the nonprofit with the most nominations receives the assistance. The nominations close on the 10th of November, 2010.

Here is an article about the firm, and why they are doing this.
 
Please, take a moment and go to the nomination form and vote for the Cutaneous Lymphoma Foundation with me.

Cutaneous Lymphomas are rare (the ratio is 1:400,000), incredibly painful and incurable diseases. They are considered the most painful of the cancers, for they cause enduring pain by damaging the skin and causing most tumors to form on the skin. Most patients are misdiagnosed for years, only to be diagnosed properly if they become Stage IV and are covered in painful tumors, yes, all over their bodies.

As I shared with you earlier, I have stage IV Cutaneous T-Cell Lymphoma. I suffer every moment.

I rarely can sit at the computer- my tumors make sitting difficult. I rarely go out, it is a great chore to bandage most of my tumors and to then put clothing on over the tumors, and moving is painful. I must 'sleep' most of the time, because as I am trying to sleep my tumors are bleeding and rubbing against the bedclothes, waking me up with pain, over and over again.

I can't work and I sometimes feel useless in this cancer battling body. 

Today it is believed that these lymphomas are most often caused by chemical exposure- somehow damage is caused to the DNA that sends instructions for manufacture of whatever cells are affected- in my case, the t-cells. My DNA is damaged and it gives the bone marrow instructions to manufacture cancerous, that is, immature, t-cells. Someday we will be able to repair DNA damage, but not today.

If you were exposed to Agent Orange during armed service and contract one of these lymphomas- you immediately get full veterans' disability benefits.

Some medications for psoriasis and arthritis can cause these cancers.

If you are a civilian you just run through your insurance and savings, most of the time ending up broke and uninsured if you are lucky enough to live for more than 18 months. I am that lucky.

another try at another chemotherapy

The only treatments we have for this at my stage are chemotherapy and radiation, they can't even give someone at my stage a remission, and rarely 'work' much, if at all. For me, nothing has 'worked', as yet. I've tried over a dozen chemotherapy drugs and combinations, and I've had both total skin electron beam radiation AND spot radiation. Although nothing has worked so far on my case, I maintain hope for some comfort and I continue to try to receive treatment. 

Some patients at my stage have a bone marrow transplant. It isn't a cure, but it does sometimes give the patient a little more time, sometimes as much as 18 months, before the patient succumbs, finally, to either infection or host versus graft disease. I'm not ready to have a due date, so this option isn't one I am willing to take, for now.

Making a cure happen is possible, but it takes money, as does research into how to help patients live a fuller life while suffering the debilitating effects of this family of cancers. This is a particularly horrible cancer- victims of this cancer suffer far more unmanageable pain than most other cancers. This prize will give the CL Foundation a much needed bit of guidance in how to get the message out, so that people will be diagnosed earlier, when the cancer is very manageable, and so that research can be funded, to cure this family of cancers.

Please help, if you can, all it takes is a few minutes on the website. It may not seem like much, 45 hours of professional help, but, it IS. It is badly needed help to bring awareness to this rare family of cancers, so that more people are diagnosed earlier instead of later. Let the suffering end. Thank you.

"I'm actually doing a show. from my shed. on the internet...."

Welcome to our shed!  We are so excited to finally have a place to store garden supplies- and isn't it adorable? It's shaped just like a small outhouse, with a tin roof and a crescent moon cut into the door. I got this kit online about a month ago for such a tiny price. Now, this shed isn't really sturdy or very big, or even weatherproof(how am I going to do that?)- but it was very inexpensive and also too cute to pass up.
The large and heavy box arrived via UPS a few weeks ago and we let it lay in the yard, sunning itself, taking in the rain, waiting to be opened and put together. I haven't been feeling tip top, so things have moving slowly here at the Coop- and this was one more slow thing!

Then, this week, our friend Dallas came to our rescue- he came over in the late afternoon and had the shed put together in a half hour- this piece goes here, this screw goes there- and before I knew it, TA-DA- Cape Coop's first shed was assembled and standing in the rear of the side yard, ready to be weatherized and filled with, well, whatever we acquire for the yard from now on! 

 The little shed, open to the possibilities!

Here's A Hug For You & Me!

I am SO happy to share this:  I have received a radiation schedule AND a
prescription for adjunct chemotherapy- today was my first radiation treatment. I am so THRILLED!

I am hopeful that in a month or so I will be improved enough to be a little more active again- and Cape Coop will once again be a topic to share here!

Jackets and Marathons

Hello, how are y'all doing? We're having a bit of a challenging time at the Coop, but I assure you that things will get better soon, and once my energy is back I will be blogging again!
This upcoming Monday we are going on an adventure and I intend to post about it, after all, adventures in this part of the universe are made possible by our lovely Cape Coop- it seems apropos.
Today, however, I am here to nudge you each a bit. And to beg for your assistance.
You're probably wondering about the photo I've chosen today, what could it mean? Well, that is a photo of my dear old 1960's Christian Dior jacket. Ah, my darling double breasted sweet, my luscious whipped butter colored lovely, with the diamante buttons and matching sheath dress(which I had a tailor eventually cut into the tightest and shortest mini skirt EVER). I ADORED this jacket, I had it for 25 years. My wonderful jacket got me through many a society luncheon, birthday dinner and concert- it could make a black Herve Leger bandage dress look lady-who-lunches appropriate- it could liven up a suddenly dull red silk Bill Blass dress, it could feminize a pair of  leather leggings- and it did all of those things! I treasured that jacket, and when we came to a time when we needed funds, and I was selling anything not nailed down, and, OK, yes, even some things that WERE nailed down, well, I JUST couldn't SELL certain of my special clothes, including dear old Dior Jacket. Why, I had kissed XXX XXXXXX of  XXX XXXXXX in it(and I didn't turn Japanese)! So, I brought it with me to the hospital one day and gave it to a girl who worked in my main oncologist's office- a girl who was always lively, upbeat, overtly friendly, in other words, someone who reminded me of ME! That girl is Abby- and lo, 3 years later, we are still in touch, and she is still a light to know.
My dear friend Abby is running in one of those ubiquitous fundraising marathons. Yes, I KNOW, they're EVERYWHERE and almost EVERYDAY- but this one is special. Abby is special, but that's not the reason this marathon is-this marathon is to help fund the research to CURE Crohn's Disease. Crohn's is a horrid, too awful and painful, chronic and(for now) incurable autoimmune disease that affects the digestive tract, making the life of it's patients VERY difficult, all of the time. Now, autoimmune diseases are getting much more attention than ever before, because they are becoming more common- the time to cure ALL diseases of the autoimmune system is NOW! Research into HIV, lymphomas, MS, MD, Lupus and myriad other chronic and deadly diseases, which are connected in various ways to the autoimmune system, are all intertwined- if we cure one we will have more tools to fight, and eventually cure, all of them!
Abby is running in the  Rock'n'Roll Half Marathon on December 5th in Las Vegas and here is her fundraising page! Abby has made a very modest goal of US$4,000 as her target, but I KNOW that this should be easy to surpass. Our finances at Cape Coop are quite limited, but we give every month, and this month we have chosen to give to Abby's cause- a worthy cause and one that will enhance disease research for MANY other diseases as well as it's intended foe. Please, will you go over to Abby's fundraising page and make a donation, as well? I know that we can cure these diseases if we can just spend the money, so that the scientific community can spend the time. Here is a link to Abby's Blog!
She is fun, witty and a real gift to the world- I know that you'll adore her.

Under the Rainbow Umbrella

Cawman's Mall Antiques & Things Folks, if you click on the link right before this sentence, you will be taken to the Google map of this Antique Mall's address- and if you go there today, you will be able to meet up with La Principessa and me!
She has packed up the car and we plan to spend our day outside at a table, under our rainbow umbrella, having a garage sale without a garage!
We're taking just a few things- this is our first foray into the world of NJ flea marketing as vendors, you know.
We're selling old cookbooks, lovely knitting pattern books from the 30's through the '70's, 78 records, vintage paintings and needlework pieces, deco glass ware and vintage china,and a box full of old Modern Library books...a set of silver plate flatware in it's original chest, baseball cards in lots and whatever else I can grab on my way out the door in the AM.
We hear that this is a big day, the mall itself is large and houses over 75 vendors, and the outside lot was overbooked- our neighbors Scott and Dallas from Broadway Joe's had to rent space outside of the outside lot! Well, dear friends, near and far, that is the news today- I'll take my camera and ask La Principessa to snap some photos for you... reporting from Cape Coop, this is Madame Big Hen! ;)

Nice

Broadway Joe's Cafe
I'd upload some more photos but our internet connection is in dismal condition right now(Send comments to Comcast!), but, trust me here, Broadway Joe's is a sweet oasis in our town. The cafe is located right in the middle of Broadway(our "Main Street")- a half block from the post office, City Hall AND the library, and across from some really wonderful shops. Broadway Joe's is just lovely, and unique enough to be worth a weekday veer from the beaten path, if you're somewhere near- to have a visit, have some refreshment, a snack or a meal.
This little place is an eclectic mix of cafe, lunch place, coffeehouse, vintage shop and gallery- you can choose to sit on a sofa, to sip tea and play a game of backgammon with someone, you could choose to sit at a table in the rear and have a meal,  to curl up in a big chair with a book and a glass of iced coffee or you could meet with a client at one of the lovely tables in the front- to discuss business in a quiet yet friendly atmosphere. You can even  do some shopping, they've got furniture, art, books, candles and soaps, even the glass work of a local artist Deb DiMarco- and she IS talented: Deb DiMarco on June16th! Or you can just breeze in and walk to the back of the building and visit with Titan, the world's most tender hearted and well behaved dog- he isn't allowed to roam the cafe, and he doesn't- just patiently lays on the carpet out back, waiting for hugs and pats from his friends. I believe he is a magical blond retriever, but don't hold me to it, I am not much good with breeds, I only know GOOD, and he is.
On some nights Broadway Joe's will remain open and offer karaoke, a live show or  a poetry reading, who knows what will be offered- it's always a surprise.
The only "Joe" there is the java kind- lovely mixes of different coffees- always a decaf available too- and so many teas! Scott and Dallas will feed you, too- they cook whatever looks good at the market every day, so the menu changes often, but there is always a cheese and tomato panini on offer- and oh,no, it is nothing as you would imagine- for instance today's was offered on Scott's freshly baked Jalapeno Cheddar bread, just spicy enough, crispy AND toothsome enough, tomato-y enough to satisfy. The boys make some wonderful baked things every morning, as well- very home style- I'm partial to the scones, always with different fruits thrown in, and perhaps that is the quirk that I love best- the natural exuberance and the joy of just throwing something in because it appeals for the moment- I love that Scott and Dallas embrace that eclectic view .
But, what I love best is that Scott, Dallas and Titan are those rare folks who embrace everyone, they are just true NICE in a world that often isn't- and I KNOW true nice when I meet it.
They have been borrowing my lovely Principessa a bit as of late- ostensibly they need her internet savvy, but really, they are being themselves, just nice, sharing the nice with other nice folk in this tumultuous world.
So, we want to plant in our yard(lovely blueberry plants, rosemary and blackberry, too!) and share it with you, but these things come in their own time at the Coop, and now is the time for nice daily walks together to Broadway Joe's, and that is just right for now.

Weekend At The Coop

This weekend 

La Principessa was busy with 2 sets of visitors, and I had time to myself. Time to take a solitary walk in the oh-so lovely, cool, clear and clean gray of a Salem April morning, to see the blossoms on a neighbor's tree...

And I had moments alone to ponder this lovely old metal cover embedded in the sidewalk on Broadway...whatever could lie beneath this, and just who was the artist of such a pretty thing?.

There were also secret places of beauty to find around our small town, like this vignette, a cinder block, nestled in a bed of ivy and grasses, near an old ironwork fence on Broadway.

 

While back at the Coop my latest loaf of bread rested on our wooden board, in anticipation of becoming a batch of my very old fashioned overnight French toast, to please the Monday morning brunch guests at Cape Coop. 

 

              I so thoroughly enjoyed myself, by myself, out in the early spring weather, and in the kitchen before and after- come for a visit again, kids, I'll feed my soul by feeding you meals, and by taking another quiet walk on my own in this wonderful, lovely, old and very Colonial American town.

.

Oooh!

La Principessa is selling a cavatelli/gnocchi maker
on eBay,
that I bought SO many years ago,
and never used!
Oooh,
THIS one comes with a personal BONUS ITEM!
Wonder what it can be?
Check out the link!

An Aside

This blog is NOT about US, that is, my #1 and me, it is truly about the journey we are on at Cape Coop, but today the kids found this Polaroid amongst my partner's things- and I am sharing it here- because we should all have this kind of love in our lives- the kind of love that keeps an old Polaroid hidden in a box, with hope, a patient heart and an affection that lives forever.

Dad & Mom on New Year's Eve, 1986

Miami, Miami, Oh MY!

Cape Coop will soon be stuffed to the roof with boxes, paintings, books, art, art supplies and MORE art- all the minutiae of an artist's life, including a 17 year old red head named Kietzsche( the vet just informed us of her REAL age, but we'll never let her know!). We're on a trip right now, packing up my partner's estate in Miami Florida, to stuff into an 18 foot truck and drive back home to Cape Coop. We have NO idea how this will all work out, send us good thoughts!

In the meantime Lent has come, and we are visiting with a church going family- I donated this lovely and VERY easy Iced Anana Cake (a triple batch in an immense, well used foil pan) to their church for the Lenten after service. At least it wasn't chocolate! The cake was a big hit, so I'll share my recipe with you here- it's pretty much the classic version, I think.

The Ingredients

14 oz can of crushed pineapple, reserve 1/3 cup of juice for icing

1 cup milk

2 1/3 cup flour

3 1/2 tsp baking powder

1 tsp salt

2/3 cup butter

1 2/3 cup granulated sugar

3 eggs

1 tsp vanilla

The Directions

Sift together the flour, baking powder, and salt and set aside.

Add the remaining juice with 1 cup of milk or enough to give 1 1/4 cup liquid.

Cream the butter and beat in the sugar.

Beat in each egg and the vanilla until light and fluffy. DON'T SKIMP ON THE BEATING!

Add alternately the liquid and dry ingredients by cupfuls, mixing each addition in thoroughly before going to the next, until all are completely mixed in.

Fold in the drained crushed pineapple.

Pour into 9 x 13 baking dish (or 2 8" circular pans).

Bake in 350 degree F oven for 35 - 50 minutes(yes, that's what I said!) or until knife inserted comes out clean.

Leave cake in pan to cool.

The Icing

1/3 cup butter

1/3 cup pineapple juice plus 1 Tablespoon

2/3 cup granulated sugar

3-4 cups confectioners' sugar

*optional* a few Tablespoons of crushed pineapple

Heat the butter, pineapple juice and granulated sugar until the sugar is dissolved.

Remove the pot from the heat and gradually beat in 3 - 4 cups sifted powdered/confectioners' sugar. Add enough to give good spreading consistency.

*Optionally, you may add some crushed pineapple to the icing at this time, it gives a lovely look to the icing!

This may seem thin but it will thicken and become a glossy and delicious topping on the cake. Simply spread this with a spatula, over the top of the cooled cake.

(Recipe can be tripled for a large sheet cake, you will also need to triple the icing.)

Oh, and here is the newest member of our little family- say hello to Kietzsche!

We're Earthy Like That

Salem County is rich in farms and the earth is important to the people here. The county has a website for the Improvement Authority with some tidbits of information to help citizens practice green habits and they even offer compost bins at a very attractive price. Here's a link to the site, in case you have a hankering to see how even a small and financially strapped community can reach out to help folks live a greener life. http://www.scianj.com/
Now, the Earth Machine, which is the composter of choice for the county, retails for almost a hundred dollars- so the county price(which WAS 22.50- but is now 26.50) is very enticing!
La Principessa and I put aside a few dollars every month until we had enough to buy an Earth Machine for Cape Coop.
And, here it is- ladies and gentleman, allow me to introduce to you Billy, Cape Coop's compost bin!
We bought him a few weeks ago, but once we got him home it was apparent that we are not bin builders- he had one tiny piece that we could not insert into the proper tab, no matter how we maneuvered and wrangled- so frustrating! The composter sat in our tiny living room, forlorn and bereft of the tidbits we had eagerly been saving up to feed it. We had saved scraps for over 2 months, in happy anticipation of Billy's arrival-and we were sorely put out when we realized that we would not be filling the composter immediately.
I admit that Mommy actually kicked Billy a few times, in frustration, as Billy lolled on the rug in the tiny living room, waiting to be fixed in a place of sun, OUTSIDE.

Somehow everything always works out, though, don't you notice? Last week I sold some fabric on Craigslist, and the man who bought the fabric was kind enough to finish the bin building for us when he came to pick up his super bargaintastic bolt of gray velvet.
Woohoo, yipppee- we have a composter in our yard now!
La Principessa and I placed Billy in the furthest South West corner of the property- right where we will someday, we hope, put up a back fence. If you look carefully you can see the posts which are already thoughtfully in place- Cape Coop is just waiting for that rear fence!

Isn't our composter adorable? Even with our 2 months plus worth of scraps AND many shovels full of dried leaves, we have only a few inches of material in the tummy of the bin- and I can't imagine that we will ever fill the thing, for he IS a behemoth of a composter and there are just the two of us, after all, but we have our very own composter for the first time in almost a decade, and that's a great feeling. I can really feel the beginning of a garden for our dear Cape Coop now. Having Billy is the first small step!

I have a reason to order gardening catalogues now! Oh, how I've missed my gardening and planning and such! I hope that La Principessa has lots of energy and patience this coming spring, for I have lots of plans for her muscles, and for the barren spots that are Cape Coop's lack of landscaping!
We are going to have a mostly edible garden- I hope for some blueberry bushes to please La Principessa, and a tiny plot for vegetables and fruits, as well as some bulbs to decorate the front yard- I just have to decide on a c0lor scheme, don't I? We don't truly have room for a tree, but I am sorely tempted to acquire one of those adorable dwarf varieties(something with fruit, of course!) and perhaps I can plant it in the swale... we'll see!
I am going to have to add another envelope to the budget now, aren't I? "GARDEN" it will be named, and tools, soil, seeds, plants, hoses and a shed will all be forthcoming- I'm sure!
I've already got sugar pumpkin seeds all ready to trade- send us a note if you're interested!