Entries categorized "Wishes"

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.

The Pea Fund and the Kindle Pipedream

The new Kindle looks cute in pink - but not cute enough for me to want just because it's a nifty color. KindlepeafundAnd the fact that along with lots of cancer patients I can't afford one now doesn't mean I don't want the first generation kindle as is, whatever color.

But when I hear about the new technology in the model coming later this year I might have to hold that thought of voracious "wanting" in the here and now. Should I in fact be thankful that there's not the money in the cookie jar for this extra?

Maybe. because allegedly the new one is even better. The last issue is will the price stay the same or might it drop as did the iphone? That could make all the difference.

On the other hand Amazin' Amazon could come up with a pea green model and donate some to the Frozen Pea Fund for patient use. I'd have to try it out wouldn't I?

Or so what if it wasn't green. What if it was just a Kindle with a sticker to show that we have friends helping us stand up against cancer.

Frozenpeafund3 Ah, now THAT would be a brilliant use of web 2.0 and the social media space inside all our heads. Patients do sit around at doctors' appointments and have a lot of down time in general. What could be better than having a kindle to keep us company and in touch?

And what could be better for Amazon than to have a Kindle in hundreds of hands in hospitals and doctors' offices and cafes and - well spread across the country? Which all goes to show that I may be sick but my brain's not dead yet.

More important however is this question. Who's going to pitch this at Amazon?

Message in a Bottle: Virtual Notes From Mom

Not being morbid, but I've done a lot of thinking - and some writing - about leaving something of myself behind no matter when it is that I die. MessagepenI have cancer, let's face it. It turned out to be the invasive kind so it could appear in some new spot next year or in ten years, it's still worth thinking about if it's twenty years from now.

It would be worth thinking about if I were 30 and might get hit by a bus - or lightening - tomorrow too.

When the kids were little - mine are 22 to 37 now - I kept a jar with slips of paper in it on the dining room table & sometimes the kitchen table - sometimes even plastic easter eggs held strips of paper. I was heavily into paper.

At one time the jar had chores written on the strips, and sometimes there were surprises or rewards on the strips, but most often the jar held questions, ideas, seeds of thoughts. Often at dinner one or more of them would pull a strip of paper and talk about the question.

They were things like:

  • What’s the most important thing you ever learned?
  • What do you like about your toes?
  • What was it like when was your grandfather was a little kid?

Funny or bonding or just designed to get them talking.

Notes2 So a few years down the road - in this age of electronic everything -  there should be SOME way to get my kids a virtual version of short notes from the glass jar when they need one.  Adult kids and even grandchildren should be able to do something when they need to feel connected to me, that would get them a message - a little note - containing something I'd say to them if I were around.

You never ever know when they need one.

  • Waiting in the ER for their kid's broken arm to get casted.
  • After losing out on a dream job.

They just need mom - anything mom can say - not about the specific situation they face but just something she wrote for them.

Oh I could just start writing messages on slips of paper and sticking them in jars or boxes or someplace to be divided up later.. but that makes the container the symbol, not the message. So I don't want to do that.

Then comes the question of what to say.

Since I don’t know when they’ll need me, and it will have to be a system where they pull one out when needed - not one where I have something all ready for the day after their husband cheats on them - I think it would work if I could just keep the messages focused on memories of them, hopes for them, love for them, tossed in with some good old mom sayings that might make them cry or laugh or roll their eyes but will make me seem close by.

Maybe eerily so, but I hope not. Because I look at this as a project of love that could be done by anybody, at any time. I'd love to have little notes available from my grandmother to me, even now when I'm a grandmother!

But now's the time I need to call on technology. If we don’t have a magic dispenser dude to open a jar and hand the kidlets a slip of paper - and they are spread out over the US like my four - is there a virtual way to get them what we want them to have - and what they probably really need? . . I hope so.

I'll be looking for it. In fact I think it sounds like fun,

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.

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