Boobs On Ice™

Lost to Heaven: Another Mother with Cancer

We've lost another of our Cancer Sisterhood, April who wrote the blog One Mother with Cancer  April dealt with her cancer, treatment, relapse, etc with grace and a smile.

Why twitter?

I'm cross-posting this from the Artsy Asylum blog because it deals with communication, which leads me to think of support, and both turn out to be fairly important for cancer patients.

An insightful reader named Karen wrote a comment on my last post about twitter, Oprah and Ashton Kutcher among others. And she made some excellent points. For example she wondered if twitter was a bit like walking around with shirts displaying our latest emoticon. Which sometimes we are in fact.

Karen and others who wonder about twitter are not alone. There are lots of negatives about twitter, especially if one uses it to constantly bombard us with links to their newest blog post, something they want to sell, or their latest "opportunity." (or cures in the case of the cancer community)

Then there's the old joke that we tweet each time the cat turns over. OK, some of that's true.

But there are those of us who use it as a way to communicate and converse and we find it very helpful. Yes, even if it's just about the cat, we are connecting with people on the other end of the magic box, and doing it in little bits as we have a moment. Like a quick comment across an office or a short group conversation, twitter fills a need for many.

Unfortunately twitter can also be used as a billboard to blast information out without engaging in a back and forth. Lots of big names use it as a way to tell people they've just bought a new BMW or had lunch with another of the beautiful people. Apparently their fans like it, as many of them have hundreds of thousands of followers; see Britney Spears & others. In fact there is a special feed just for celebrity tweets.

I think that's kind of not the point of twitter, but opinions vary.

My experience is that for the most part twitter is much more personal than that billboard Karen wondered about. Not everybody sees what you tweet unless you have millions of followers like Oprah and Ashton Kutcher - although if folks have superhuman reading speed perhaps they can read your and all other tweets streaming down the public timeline

If you're even more concerned with just communicating with a very select group you have the option to set your account to be private & only let people that you actually know follow  ( in other words people will never see your tweets unless you give them the OK.)

In any case, the only people who wind up paying attention are those who subscribe or "follow" you. It's not as if everyone is interested unless they see from your profile that you have something in common. Often you start off connecting w/ people you know in real life.

Beyond that, attracting kind of followers you want is not always easy. So it may be that broadcasting via the twitter billboard may not be an automatic success some would hope.

In my case, it's been a surprising experience for me. Specifically the support I got from twitter right after my breast cancer diagnosis was just astounding. My real life neighbors didn't do as much as send a card. Twitter people - complete strangers - wrapped me up and held me in a virtual hug.

You can read more about the phenomenon of twitter the frozen pea images that flooded twitter here in a Washington Post article and see an article from Robert Scoble about Peas on Earth.

Twitter is not for everyone and there are many other options that may meet different people's need. But after my personal experience with twitter, with how I've seen others benefit themselves and others as they reach out share experiences, fears and emotions, I can't say enough good stuff about the concept of sharing my emoticons too :)

Remembering the Light of Lisa Kelly

When I met Lisa Kelly in late 2007 she was swearing. Justifiably furious about her ordeal with cancer diagnosis and treatment; disappointed in her level of medical care; afraid of what lie ahead; she thought she had beaten the disease but was raw from what she had been through.

Meanwhile, busy playing serene Frozen Pea princess, distracting myself with outreach, stupidly sure that I had a handle on what was happening with my own cancer and generally not understanding diddly squat, I made Lisa one of my favorite "adoptees".

Regardless of my cluelessness, Lisa took it in stride as I roped her into groups; recruited her for the Mothers With Cancer blog; and introduced her to "just one more thing" she didn't need to be taking on. She didn't swear at me even once. That alone had to take self control.

Over the past year we both had setbacks and surprises; ups and downs. As I struggled emotionally she showed amazing strength and will. Mother, wife, friend, truth teller and medical knowledge compendium, she battled when she could and gracefully accepted reality as cancer took its course. Through it all, she was one tough cookie.

Lisa lost her battle with cancer on Friday February 27, 2009 a little before midnight.

Somehow I imagine we'll get through the loss of the funny, smart, irreverent soul that was Lisa; perhaps by remembering the blessing that is her new freedom from pain.

In my struggle to accept the shortened lifespan I've been dealt, I'll do my best to let Lisa - who was young enough to be my daughter - guide me in putting it in perspective. No way can I ever hope to do it as well as she did.

And if she doesn't have a special place in heaven tonight there's something wrong with the system.

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.