Boobs On Ice™

My Cancer

"It's not sleepy tired. A nap really doesn't solve the problem. It's more just physical exhaustion. I tell myself that it's just my body, using its resources to fight the disease. I hope that's true. But there are times where I lie down for what I think will be a short nap and wake up hours later.

"But it's more than just being physically tired. You get tired mentally. You get tired of fighting sometimes. Tired of telling yourself it will be OK. Tired of telling your friends that you're fine, and acting like it's true. Just tired of dealing with it all: the doctors, the shots, the pills, the cancer"

Leroy Sievers wrote that two years ago. And yet he kept moving on.

Last week I tweeted that when Leroy blogged that he had a toy dog in bed with him my heart was breaking. I wondered how much more I could read without being totally overcome with sorrow at his decline.

Then on Friday distant thunder and deep booming explosions rolled across the Washington area, making it sound more like a war zone than any storm I'd ever experienced. It brought with it a feeling of unease. Maybe foreboding, but who can say in hindsight.

And within hours Leroy was gone.

Leroy told the story I am too afraid to face head on to start talking about it more frankly. He talked about the doubts about treatment vs no treatment for what is after all a disease that will kill us. He disliked the term "survivor" and admitted he was a difficult patient. My kind of guy.

And now?

I am indeed heartbroken. And I will so miss his voice.

NPR: My Cancer

Cancer Fundraising - Sacrifices and Possibilities

Pan-Mass Challenge - One Rider's View from Doug Haslam on Vimeo.

I'm proud to know Doug Haslam who made this video of his experience with the PanMass Challenge, a 2 day bike trip across the state of Massachusetts to raise funding for cancer research and treatment. And I'm proud that the Frozen Pea Fund could contribute to enable him to make his goal.

He's got some excellent footage of what it's like to participate in this sort of event and something that stood out for me while watching was how much small bits of support can help participants.

One of the things that happens with individuals taking on a challenge like this is that it's just overwhelming. Not only the physical effort that goes into it, but the idea of finding support to get that fund-raising thermometer started, or to finally get to the goal, can be difficult.

The thought of what supplies and gear might be necessary to outfit a team with what they need can be intimidating as well.

Although it will take lots of people to make it happen, it's my hope that in some small way what the Frozen Pea Fund can do for people who make these sacrifices is to help those who want to participate leap more easily over some of those hurdles along the way.

I've been doing my own thing and not talking too much about it lately, preferring to put some time into volunteer efforts and outreach rather than to thinking much about my own situation.  At least that's the plan. It seems like it's one step back then another forward, then another back, but overall there's progress over the past six months and I'm glad about that.

I promise I'll share a little more about my own story soon, but right now I'd rather focus on people like Doug who put their energies into doing something hard so that research into a cure for cancer might be found.

PS - Doug's still glad to find new supporters and has a sponsor page set up here

Living our own "Last Lecture"

I don't usually post the same general content on two blogs, but this is an exceptional time and a cluster of very visible cancer deaths seem to be all around us. So the Boobs blog readers who don't always read the Artsy Asylum Blog may have missed what I passed on there.

I wanted to share it with all of the people who I have any reach to - because I believe it's such an important thing that I need to talk about.

Here's where I am. Since December 7th 2007 I'm in and out of hospitals and clinics and medical offices more than anyone wants to be. And maybe as a part of this or because it's just who I am, it's agonizingly difficult for me to see people with cancer deteriorate and die - even those I do not know, or know only slightly. One of these, Randy Pausch, the Carnegie Mellon professor whose "last lecture" made him famous, died today almost a year after he was diagnosed with pancreatic cancer.

In the time leading up to his death Randy looked good, in contrast with Tony Snow's appearance in the months before he died earlier in July of colon cancer that had spread to first his liver and then elsewhere. Tony was gaunt and had aged twenty years in my eyes. My heart hurt to see him.

Then every weekday that Leroy Seivers of NPR writes his blog I get emotional again as I see evidence of a steady decline and that the always insightful and frank Leroy is near the end of his life, as he now weighs the pros and cons of hospice, and has a home health aide four times a week.

But as sadness envelops me, Randy Pausch simply bloomed! In the months before his death Randy was upbeat and seemed unfazed by what the rest of us are overwhelmed by.

And that gives us all something to consider.

When he gave this Carnegie Mellon commencement address in May, he had lived three months longer than the three to six months doctors had predicted, leading a friend to say he was “beating the Reaper.”

“We don’t beat the Reaper by living longer,” Pausch said. “We beat the Reaper by living well.”

My message in reflection:

• Please love others and live well while you can.
• Give generously of yourself and your spirit.
• Adopt a cause or two.
• Be present to what's happening around you and not distracted by the latest shiny thing of the blogosphere.

It's easy to be engaged by internet popularity, blog stats, being included in lists and invited to functions. Things are nice to own. But will that really matter when you face the end of the road?

Like Randy Paush who was only 47, or others we know who were suddenly stricken and died much earlier, we never know when an unexpected diagnosis - or a bus - will mark the end of our time here.

Let's make today even - simply this day - one that we'd be proud to call our last.

And then tomorrow let's get up and do it again.

And while you're doing it, just know that I love you all.

Caring for Little Serenity Burns

When I feel like a washed out dishrag I try to think about Phil Burns' tiny two year old daughter, Serenity who's just 2 weeks into a very sudden and life-threatening diagnosis of Leukemia. Serenity can't analyze what's happening, or try to understand why everything hurts like I can when bad stuff happens to me.

Another way cancer is different for me is that my husband's insurance pays for much of my care. Phil's not in the same position, so one of the first things that friends did is to set up a chip-in account to help cover some of the mounting expenses.

Chemotherapy, antibiotics, hospitals, anti-nausea drugs and all the other things involved in taking care of a very sick little girl is expensive.

If you can help in any way, large or small, please do. Your kindness will be appreciated not just by Phil and his wife Adria but by all of us in the cancer community. The love you show one of us you show the others as well.

To simply put Serenity’s ChipIn Widget on your blog or website requires very little effort and will help publicize the cause. If you click on this link: you'll be able to get the code for a widget and also get help on putting it wherever you'd like. 

The Power of Peas and Five Finger Shoes

There's not much that's comfortable about the whole cancer ordeal but when I saw another blogger talking about these shoes last night on twitter immediately the thought hit me that if a patient wore those shoes at least one part of them would be comfortable. If it were me, I might have a hard time taking them off.

Here's what occurs to me.  Does wearing fun comfortable clothing and footwear make a difference to cancer patients?

As a founding Board member of a cancer charity called the Frozen Pea Fund I see our mission going far beyond the initial large amount of money we raised that went directly to the American Cancer Society. I see us asking questions like this and helping to get answers about patients' comfort and outlook.

After all: Frozen Peas Relieve Pain

Since we have incorporated and become a non-profit we have made it our mission to help cancer patients in NEW ways using creative thinking, new technology, new media, and we hope for inspiring new results. So this "comfort" thing seems right up our alley.

Oh I know we can't prove that five finger shoes or other fun, comfortable wearables cure cancer but it has been shown that mental outlook is responsible for more than 50% of a patient's chances of survival!

BUT - I personally can't imagine looking down at my feet wearing these shoes and not feeling a GOOD emotion - thus releasing endorphins and all kinds of other good stuff that would help the busy T-cells get together and do the nom nom nom on the pesky cancer cells.

So to me that's now part of my mission in life. I want to try what I can, and share as I learn.

Frozen Peas are More than a Fund Raising "Gimmick"

Frozen Peas relieve pain. They can be applied to any spot that hurts. Though giving to the Frozen Pea Fund can help us do good in many ways large and small, helping cancer patients in personal and global ways the concept is a simple but far reaching one and involves much more than clicking an icon to donate.

It's a bigger concept than that - and involves your actions

• It happens when you know information that could help cancer patients, and you share it because of the Frozen Pea Fund.

• It happens when you have a contact you share because the Frozen Pea Fund brought a need to your attention.

• It happens when you send a gift certificate for meals to a cancer patient because you are reminded that was even an option that someone across the country could do.

• It happens when you look up a resource for massages in another area of the country & gift a patient you know, just because the FPF made you aware that might help

• It happens when you set out a fishbowl at your next tweetup, talk about the concept of frozen peas reaching out to the community, and asked for folks to throw in a few dollars to help someone in your area or the FPF in our mission.

• It happens when you drop off treats at your local cancer center to thank staff for the work they do.

Frozen Peas Ease Pain. Think of the good that you could do multiplied by a hundred of us, or a thousand of us.

So this article isn't as much about shoes as it is about sharing?

BINGO!

Although I'd like to try the shoes, wear them at the hospital, talk about them to staff, discuss with my contacts at other medical centers, and help other patients try five finger or other shoes to see if they could provide some comfort  . . beyond that, I'd like to see Vibram participate with the Frozen Pea Fund in experimenting to see how this small bit of fun might energize a cancer patient in a small way.

But this goes far beyond that little brainstorm

Like pesky little frozen peas rolling out of a bag and scattering to all corners of your kitchen, the Frozen Pea Fund provides an unlimited number of tiny sparks of ideas, one of which might land in your lap.

Please be open to those sparks. Tell us about them. Talk to others about them.

Consider the potential energizing and feel-good benefit of thinking outside the box - or bag - of frozen peas.

Frozen peas ease pain. Let's make that happen in little ways and big ways.

The Role of Emotional Support in Cancer Therapy

"health care providers acknowledge the role of emotional support in the treatment of pediatric cancer, and go out of their way to meet the needs of those patients.

Emotional support is presumably just as important in the treatment of adults, but there is much less of a focus on it from health care providers.

The hospital where I work is arguably the best in the country, having a strong integrative medicine program in addition to a commitment to scientific research. I know the patients here are having their emotional needs met to a greater degree than anywhere else in the country.

What I am concerned about it the lack of emphasis this aspect of treatment is getting elsewhere."

Link: Dr. Miggy 5.0

 

Learn more about providing for patient needs:

• How to Help A Friend With Cancer - Seattle Cancer Care Alliance
• relief for a neglected area of cancer care: the emotional turmoil caused by the diagnosis, symptoms and treatment of cancer
• Mundane household chores tackled by Cacer helpers
• Cancer Coaches to help patients navigate a maze of choices and chaos of decisions

The Non Super-Powered Cancer Patient

"I think that the people surrounding a person living with cancer often need that person to be a superhero. They don't want to see you frightened, or sad, or depressed.

I try to deal with these expectations as best I can, even if it means that I no longer see some people, the most extreme way of dealing with them."

@ Jeanne Sather 2006 in: The Assertive Cancer Patient

About a year ago I was befriended on twitter by a group of close friends which seemed to take me under their wing. The word seems is the operative one here because this friendship only worked for them if things went in accordance with their belief systems.

One thing that was frowned on was admitting physical disability in anything other than a "fun way". As one of them said: "You'll never get a contract if you let anyone know you're sick. You have to pretend to be healthy and wealthy. Never worried about anything"

But Frankly

Even before my cancer diagnosis in December 2007, healthy was a stretch for me to pull off so that didn't fly. After some episodes of be being frank about this they departed from my support system  en-mass about six weeks after I got cancer. And I mean that literally. Within a week all were unsubscribed from my twitter, blog, you name it. One, a very prominent tweeter even dropped and blocked me on facebook without a word.

They clearly believe what they say and live their lives with FUN being the motto. And they are accurate reflections of much of the "real world" where being our real self is seems tantamount to admitting we are  worthless pieces of humanity holding a gun at the ready just to rid the world of ourselves - when in reality we're communicating a real story - without flowers and hearts and pink tennis skirts.

Because let's face it, some of us are not able to go canoing or golfing, bar-hopping or walking for that matter. It's not doom and gloom it's just reality!

This is put on a happy face thing not an unusual phenomenon. In families mothers who are getting more and more ill continue to do their multi-faceted jobs long after the children should be helping by putting dishes in the dishwasher, mixing lemonade, folding clothes and walking dogs.

The people around us can put their heads in the sand as long as we pretend we're "able".

But are we doing them any favors?

Are we doing neighbors any favors if we don't tell them we'd be glad to have them bring in dinner once a week as respite for our families? Are we doing our online friends any favors when we put on a mantle of "tough it out?"

Jeanne Sather is right though and people don't want to see us frightened, or sad, or depressed.

For the record I'm not depressed or sad so much at this point as I am frustrated and sometimes overwhelmed. Then there is pain and fatigue. That's still not under control. Some days pain is worse. But most days fatigue has me decked. Literally.

Some don't like to see that. Others dislike reality in general. But unfortunately that's what I've got.

Representing the situation as anything else seems like a lie to me.

Not to mention that it would also discount all the great stuff my twitter and blogging friends do for me, and my 22 year old daughter who has put her life on hold, is living at home and on whose shoulders falls most of the everyday "stuff." She even represents me at live events I can't get to.

I've learned to stop pretending there's nothing wrong

No longer interacting with some people as Jeanne suggests is an option. I guess education is another. But that's harder to do with some than many others. I'm lucky to mainly have friends and readers to whom I can tell the truth.

Like you.

Disease Happens

I found this amazing woman; Annie the Knitting Heretic who writes about my emotional life, as if she were living it. But she's not. But them again, she kind of is.

The details aren't the same. But the feelings? The fears. The hopes. Like me, Annie's husband Gerry has cancer, Multiple Myeloma in his case.  She stopped by my blog to comment one day and I then went to read hers. Am I glad I did.

She says:

"God, I get sick of explaining this.

'We are a society that is in denial.  When folks ask about Gerry and I explain the disease and the prognosis, the response is, "Don't believe the worst!  Have Hope!  Things can change!"  Lovely sentiments, but I believe they're being said more for the benefit of the cheerleader than for our benefit.

"I don't think we ARE believing the WORST. We're being realistic. Yes, things CAN change, and we both hope they do. Desperately.

"But hope is expensive. The energy and concentration it takes for us to make each day as rich and full as possible - to get everything out of life that we can - just about saps our resources. There isn't a lot left over for hope (false, or otherwise) so we just live realistically and - yes - hopefully. But we don't base our lives on hope . . .

". . The fact is, disease happens. Sometimes it shortens life. It sucks, and it's unfair, but it doesn't have to ruin - or even diminish - a life. We don't spend every day shopping for caskets, but we also have a realistic outlook on where our family will be in 3, 5, 7 years. No one can tell the future, but we can prepare."

Next time another cancer patient or a well wisher or some innocent schmuck who is just trying to be helpful tells me my problem is that 

1. my problem is not planning for another 20 years
2. I'm giving off negative energy or c
3. hiking, eating bark, and swimming in cold salt water will fix what ails me

I'm sending them over to talk to Annie whose own reality she blogs about here   along with her knitting / design career, her children, her plans to help fund some of their expenses and life in general.

Boy, am I glad I met Annie.

 

Peas for Pets

"Susan, I heard a local D.J. talking about animal sterilization today, and he said to get them little bags of frozen peas."

Lilly B from Twitter

Somehow I can't imagine getting my kitties to lay on cold peas after a sterilization procedure but maybe it'd work with a bigger animal?

It made me smile anyhow to think about it. All I know is a bag of frozen peas after biopsies sure helped me.

 

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.

First 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.

And 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.

-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.