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.