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Entries from March 2008

Technorati Post

Technorati claims it can't find this blog. So here's the code IN a post just as instructed as one of the dumb options.

Sign. And it soooo screwed up the rank etc from a blog I've had for four years. Where's the OLD Technorati, or maybe I should ask WHO or WHERE is the new technorati? 

I know, this isn't an entry about cancer. But . .um . .  it's about stress! And stress is bad for cancer.Technorati

Technorati needs to get it together and stop showing me this.

Because if I can post this message obviously my blog host IS reachable. Just because YOU can't reach them is not my fault

<insert grumbling here>


What Are We Doing? Where Are We Going?

In a short tradition born in the last part of December 2007, Fridays have become Frozen Pea Friday across the bloggosphere.

PeablockFirst came the images. When I went in for my biopsy and then put a bag of peas in my bodice to help keep my breast pain soothed, others did the same in solidarity. Some held peas proudly, some ate peas in images, some bathed in peas. And some became peas in graphic format, wore clothing made out of peas and bundled babies up like peas in a pod.

Next came the idea of donating the cost of a couple of bags of frozen peas to a cancer charity, one which focused on research and education, as well as helping all around the world.

The American Cancer Society was pleased to take in around ten thousand dollars in under twelve weeks from the amazing people who generously gave multiple gifts and became the first social media grassroots effort to in essence "grow itself". They would have been glad to roll us up into their machine, feeding money into an old way of doing things and, well we just didn't like how they saw our future.

So now as the avatars still dress up for the special occasions in their pea green, changes are happening within the small group who became the founding directors of the official, duly incorporated Frozen Pea Fund, a 501c3 non profit corporation.

PeasavatarborderedAnd grow and develop we must.

For as gifts grow, as offers to create programs for us come in to us, as requests for us to share our story with others' grows, as we do interviews, read stories about the  amazing magic that surrounded a cause people could feel was right to do with their whole hearts, we need to be prepared. 

We need the same freedom to innovate and think out of the box as we move from a loose group of people trying to fill a need to people studying, meeting and networking like mad in order to put together a group that's capable of doing what we've been charged with doing.

Our papers have been filed and approved; we're official, that's all good. Trademarks, check, Processes, Bank account, systems of accounting, we're working on them.

Which brings me to this Friday when there is no widget that puts our money in an account that then can do the most good for the most people.  But waiting for a widget forced us to take a breath and look inside ourselves, asking - What else can I Do?

As we set up strong foundation for the FrozenPeaFund today & as we plan for and welcome new opportunities & challenges we hope you will do the same.

Don't take off your peas - In fact put them on proudly to help you to reach out & take on the challenge of talking about cancer. Tell about your experience of having the disease, of knowing someone with the disease. How has it touched your life? What have you learned?  Tell even one person your story and the world will change.

-Tell one person about what we've been able to do with the Frozen Pea Fund effort. You may make the difference in us finding some attention on a blog, a news show, a podcast or from a sponsor.

Pealines-Talk with your family about the cost of two packages of frozen vegetables - or ice cream - and what kind of sacrifice it would really be for you to commit that money to the frozen pea fund for the rest of this year. What would that mean for you? What might that mean to a researcher, an underfunded breast clinic, an counseling program for children whose mothers are dying of cancer.

- Take the challenge of helping us build a good structure by committing an hour or two of your time every week to an endeavor however small that can help us reach our goals. You know your strengths and know how best you can help.

As the months and years go on we want to make sure some things stay the same but also to do all we can to make others change.

- We want to remember the shock at my sudden diagnosis and the love that was felt from a community in pain.

- We want to encourage others to connect with other patients and patient's families at whatever stage in the cancer process they are at, offering them what we would have offered in our community those days.

- We want to clearly demonstrate that we care about all who suffer with a diagnosis of cancer, who are shocked and devastated by this sudden illness.

- We want to bring light into the dark corners in which cancer is not spoken in spite of cancer's being in the house for years or generations, taking some family members forever and leaving those left behind unable to deal with their feelings about it until late adulthood - if then.

It's a mission we're on together, Not to cure every ill of the world, But to prove that a small group of people can make a difference and when one person reaches another person we can make things happen in a different way than they've always happened.

I need your help, And I don't just need it today. But if all you've got is today, I'll take it in a minute. Put A peas in your photo and lets talk to someone about cancer.

Quote: Sprinkles of Happiness

"Happiness is  not a constant state of being, but moments sprinkled throughout your days."

Kurt Vonegut

Can You Find Cancer Here?

From Osocio, Social Advertising and Non-profit Campaigns originally from Hospital Cancer de Barretos comes this breast cancer poster.

Click to zoom in and you'll see that the word cancer is very well hidden in the word BREAST.

Cancerbreast_2Hard to detect . . . Just Like In Reality And worth talking about.

 

Peas on Earth Art Helps the Frozen Pea Fund Reach Out

Georges_pesstampsingle_2Part of the community who has supported both me and the Frozen Pea Fund has been George Brett who created my "peas" necklace.

Now as a way to reach out further into the community the image of the peas necklace has been made into a stamp that you can use to promote awareness and direct people you know - and don't know - towards the Frozen pea Fund, and further support our mission.   

Artistampede: Peas on Earth - Art to Help the Frozen Pea Fund Reach Out.

Just Doing It

We are worlds apart, We don't have the same kind of cancer. We are not at the same point in our lives - in fact I have children older than she is. But in addition to friends, and blogs, and cancer, Kate and I have other things in common. One of them is animals.

Mine are cats who sometimes send twitter messages, Kate's is a frog who sometimes writes blog posts and recently wrote - er suggested - some rules for dealing with cancer patients.  All I have to say is that he's a darned smart frog!

"Certainly these aren’t universal truths. But they’re a good starting point, and hopefully they’ll help other people who are friends or family of someone diagnosed with cancer

"There is something you can do, so quit asking and do it.

"Whenever I asked Kate if there was something I could do, she just politely declined and said that she appreciated the offer... I realized after a while that it’s pretty hard for most people to (a) accept offers of help, and (b) think about what might be most helpful, especially if they’re just trying to assimilate a new diagnosis.

"So instead of asking, just do: cook and deliver some dinners, show up and cut the grass or rake the leaves, clean the house and run the sweeper, just do. And don’t make a big deal out of it."

I'm thinking about posting this all around the neighborhood. Someone might even organize my studio closet if I was really lousy looking that day.Gift

Honestly I seem to know lots of people who DO just do it. They are not nearby so they don't clean or shop but they do what they can - like sending cookies, fudge, colored pencils, little surprises that nobody needed to give permission to do. They just go ahead and do.

I'm thinking that my friends and Kate's frog friend have a lot in common. And the world's a lot better than it appears to be if one just listens to the national news.

Kate's Blog can show you a lot more about the good stuff in the world. And watching the little video below can show you how special and thoughtful some of my friends, in this case Lucretia Pruitt aka @geekmommy, can be, just out of the blue!

Cancer Publications Sadly Miss the Mark

Good news! I found this publication available from the National Cancer Institute:  Get Relief From Cancer Pain

Sounds helpful, right? Giving us up to date suggestions? The latest information, right?

I mean after all, it's from the National Cancer Institute. But the thing is . . not really.

The publication, and it's generous to even call it that, contains almost nothing of value; is written on about a third grade level and passes on next to nothing aside from generalizations.

I went back to looking at the information abstract. I wondered how they viewed what they were distributing.

Audience:  Low Literacy, Cancer Patient
An easy-to-read brochure to inform patients that medicine and other treatments almost always can relieve cancer pain. The patient is encouraged to talk to his or her doctor or nurse as soon as cancer pain begins. 5/1994 Last Printed:  5/1/1994

In essence what they said in those two sentences is what the brochure contained in it's entirety. Bla bla bla.Puzzled

So after I had no luck finding anything specified for those of us who want more information than we could get from our babysitter, but thinking this sad condition about their literature surely can't be the case across the board, I picked out other publications at random to check for how informative and up to date they were.

"Eating Hints for Cancer Patients: Before, During and After Treatment was last published 7/1/1997. Please don't make me describe it. We're supposed to eat well. Ahem.

The most recent I found - published last year- Managing Radiation Therapy Side Effects: What To Do When You Feel Weak or Tired (Fatigue) was a one page sheet And although it is about twenty times improved over what I'd seem previously it contained some gems of advice like like: be active if you can and rest if you need to.

I think my neighbor who's six years old may have polled her class to get those suggestions.

And o.k. fine, I'd like to have the NCI spend most of it's income on research so we can kick cancer to the curb once and for all but in the meantime we all have to deal with sharing what we know. And from what I see here, reaching out to share helpful information with patients has really gotten the short straw lately with the National Cancer Institute.

This isn't to say there is not good information out there. And some of it may be available from the NCI.

But the average patient should not have to be a research librarian to find helpful, timely and intelligent information when they need it. That means when they are in pain. Or when they are not able to eat right. Or when they are feeling exhausted from treatments.

Those are the times that our researching skills may be the worst. And when getting information winds up being hardest.

So what should organizations do with their outdated, unwieldy and just plain dumb information?

After tossing a good portion of what they've got from the 1900s in the dustbin of the past, I suggest that they Develop - Expand - Multiply - Organize - Update and Share it!

Talk to us like real people. Give us more then we need, not less. Assume we want suggestions and details and cold hard facts too. Know that we want both the practical and the data. We're complex people with complex illnesses and challenging lives to live. If you want to help us don't gloss over things or write paragraphs with lots of words that say nothing.

And for heaven's sake don't talk down to us. Just because we are battling cancer does not mean we checked our brains at the door.

Patrick Swayze: Rumors, Signs, Outlook for Cancer

Cancer hits people from helpless infants to those with money and power. Not only do we not know when it will hit - we don't know what will happen during the course of treatment.

And then there are the rumors, old wives tales, and just wrong information. So it isn't surprising that there's no clear story about the pancreatic cancer that has allegedly struck actor and dancer Patrick Swayze.

On one hand there are reports that he was diagnosed in January with pancreatic cancer at age 55 and three months later the cancer has spread to other organs, giving him mere weeks to live.

Other reports have him having completed 3 of 5 scheduled chemotherapy courses; resting at home after surgery; working on a cheerleading movie in Los Angeles; having lost 20 lbs; or perhaps something like 5 weeks from death. Rumor, inuendo, misleadeading statements or just confusion? It's not clear, though with cancer it seems things rarely are.

What does seem clear is that during February Swayze has been been undergoing what one source called "radical" chemotherapy at Stanford University’s prestigious cancer center.

If he does indeed have pancreatic cancer it's likely that it is an advanced form of the disease. Since the Pancreas is an organ which secretes enzymes throughout other organs it's not hard to understand why pancreatic cancer spreads rapidly and is seldom detected in its early stages, making it a major reason why it's a leading cause of cancer death.

Since symptoms do not develop until late in the disease process, the following are worth noting;

  • Upper abdominal pain that may radiate to your middle or upper back.
  • Loss of appetite and unintentional weight loss
  • Yellowing of your skin and the whites of your eyes (jaundice)
  • Itching
  • Nausea and vomiting
  • Digestive problems

But more important perhaps than knowing symptoms is support for funding research into the genetic traits and other issues that put one at risk for this and all cancers.Ribbonpancreaticcancer

Patrick Swayze, like me, is not an obvious candidate for the cancer he is said to have developed. Although more men than women develop pancreatic cancer he's not the picture my research showed to be the prime candidate: A black, cigarette smoking chemical worker who carries around excess weight and eats an unhealthy diet.

Sadly though, the five week outlook is not totally unbelievable. The average life expectancy after diagnosis with metastatic pancreatic cancer (cancer that has spread beyond it's original site) is 3-6 months and more than half of pancreatic cancer patients have cancer that has already spread when diagnosed.

Pancreatic cancer is the 4th leading cause of cancer death in the United States and  the 3rd leading cause of cancer death among 40-59 year old men. Whatever the case with Patrick Swayze's diagnosis, I wish him well and pray that some good results as this and other cases come to light and more attention is focused on the hard questions raised by any cancer diagnosis.

Your Power of Communication: SharingHope.tv

AcsDisclaimer: Although I worked with the American Cancer Society's High Plains' Division on this project, I'd be telling you that it's something special in any case. Besides my part was very minor.

Anyone who knows me knows I'm not really geeky enough to do any of the tech part of what makes this something I think has potential. But I'm a person who believes in the power of communication. Sharing Hope tv has that covered and more.

What Sharing Hope TV allows cancer patients and their families to do is to share their stories, communicate their pain and joy and triumphs and disappointments, and learn from others' stories. It's got much more to offer than platitudes, brochures, a disembodied voice on the telephone.

As the press release explains, the hope is that this effort will

"...help connect cancer survivors, their friends and family members. SharingHope.tv allows users to upload video, audio, photos and artwork to tell their stories of cancer. Innovative for a non-profit organization, the new site relies almost completely on people outside of the organization to create its content.

Resource: Press release: American Cancer Society Channel for Cancer Stories

Website: http://www.sharinghope.tv/

I hope you'll take a peek and get familiar with what they are doing here, and that you will pass the press release and the website URL on to anyone you think may benefit.

Please continue to talk and to reach out. Please continue to share how this subject has touched your life and those around you.

Without communication, the fight against cancer, and it's effects on lives and families has little chance of succeeding.

About My Cancer

  • Invasive Lobular Carcinoma
    My form of breast cancer is less common than others. In fact only about 6 to 8% of cases of breast cancer are the invasive form that is based in the lobules, not in the milk ducts.

    Invasive, sometimes called Infiltrating, is a scary word. In most cases this form of breast cancer has been present for 8–10 years when detected by a mammogram or physical exam.

    In my case there was clearly an area that felt thickened or dense on December 6, 2007. A mammogram the next afternoon was not able to detect it but it clearly appeared on ultrasound and was confirmed by multiple biopsies the same day.

    During those 8 to 10 years the cancer took to become apparent to me, there has been plenty of opportunity for those invasive cells to get out of the breast and spread to the rest of the body.

    It is after all, by definition, an invasive form of cancer.

    Each year about 190 thousand women are diagnosed with invasive breast cancer in the US and about 40 thousand women will die of the disease. The larger the mass is when discovered the more risk. Mine had tentacled almost 5cm into the surrounding tissue and two other areas in the breast were discovered as well.

    My chances of living another 10 years without cancer in another area are about 40%. The likelihood of one of my other underlying health conditions doing the job before that is 20%. it took a few months to get used to that idea.

    Now though my attitude is that at least I know what I'm facing. It's just not what I expected. Life changes in an instant.

Funding Cancer Research


  • We Will Not Apeas Cancer

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