Boobs On Ice™

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.

Bone Scan Land and Metastatic Cancer

The report from my bone scan made it's way to me last week by way of a casual conversation with my primary care doc who called to see how I was feeling. While we talked she said she'd heard from the oncologist I saw once and abandoned.

Turns out she'd also gotten my bone scan report. Of course I promptly pushed to get results and she's pretty straightforward with me. It's a good relationship and I appreciate her candor.

That's about the last of the good news for now.

Turns out that two area of bone are either deteriorating (some of that could be age) or the breast cancer has metastasized and started growing in one or both areas. That sounds like a bad news / worse news option. For some reason the bone has some areas significant enough to warrant concern.

It doesn't come as a shock so much as it's a blow that I hoped to avoid for awhile.  Invasive lobular breast cancer isn't known for staying put but I'd hoped I could finish reconstruction, try to get some help with the overwhelming exhaustion, and work with the Frozen Pea Fund on increasing knowledge about cancer and funding some worthwhile projects for a few years before tackling my next round of questionable news.

On the other hand it explains the pain in both chest and lower back that I've been blaming on chest wall expansion and a back injury from my teen years.

Unfortunately I'm stuck not knowing more until I can get an MRI. That can't happen until the chest wall expanders come out. They contain metal and that's a no-no for going through the MRI machine unless I want to chance them being magnetized right through my chest wall. No one wants blood on the MRI machine apparently.

So when my second surgery is done, expanders out, new boob built, I'll see how quickly I can finagle a spot in the MRI tube so we can perhaps find out what's happening in the bones.

My next appointment with Doctor Chang at George Washington is on Friday to discuss surgery he thought should be the first week in June after the current expansion has time to rest a bit. I'm going to try to jar him lose from that estimate and hope to move it up at least a week - maybe more. I'd like to be able to get going on diagnostics.

In the meantime I'm reading up on treatment for breast cancer that has moved to bones. My reading reinforces what my understanding that it does not then become bone cancer, but in fact remains cancerous breast cells but moved on to a new host and growing in bone, taking over where bone cells should be.

Sometimes we need a shove to get us - OK me at least - to move off Start to  Action.

So while I'm at it, getting a clear diagnosis is also time to think about stabilizing the bones in my lower back. Whether it's because of cancer or deterioration its a lot more painful to stand in the past couple of years. And something there has to get fixed no matter the cause.

The injury in my teens means that issue is something I've been dealing with for about forty years but the pain and immobility has been increasing in the past seven or eight and severely limiting in the last two or three.

I'm taking it pretty well. Not sure how the family is except in waiting mode. If you weren't along on Gone Nuclear - Full Body Bone Scan Day you can go back in time via this video, or check some of the links to learn more about various topics. being informed is not a bad thing.

• Metastatic Cancer: Q&A - National Cancer Institute
•  Merck Manual - Everything You Need To Know About Cancer -
  this has wonderful detail but is a very layman friendly guide

and if you're still reading after that, delve into interesting possibilities

• Scientists Investigate Treatments for Breast Cancer That Has Spread to the Bone
• Sloan-Kettering - Molecules Can Block Breast Cancer's Ability to Spread to Lungs and Bone

 

 

Breast Reconstruction Process: Halftime

If you've never heard much about breast reconstruction following mastectomy you may believe that  surgeons just remove cancerous breast tissue and replace it with a breast shaped form, sew up the skin, and you're good to go.

Not quite.

Clicking on this image will show an enlarged illustration of how the chest wall is stretched - in a series of  weekly or bi-weekly expansion procedures with the surgeon on an outpatient basis - to create a new pocket in which a breast form is placed in a second surgery.

I have one, perhaps two, more expansions before the pocket is large enough to accept the form. The last expansion will be followed by a couple weeks of rest for the chest wall. Then comes  surgery to remove the expander and replace it with the breast form. I am hoping to schedule surgery before the end of May.

So far I'm at four months and counting, though some of the feet dragging was absolutely my issue with decision making and needing reassurance. I admit it has been painful and I've had many doubts along the way.

Below is a video done after my visit with the surgeon a little over a week ago in which my chest muscle tissue was further stretched. It will hopefully give you a little more personal slant.

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Where and What is the Paradigm Shift Oncologists Expect in Understanding and Treating Cancer?

 

Dr. Larry Norton, Oncologist, Memorial Sloan Kettering Cancer Center / Dr. Lynn Schuchter, Oncologist, University of Pennsylvania Cancer Center / Carol Hochberg, SHARE / Dr. Dennis Slamon, Oncologist  Revlon  UCLA Womens' Cancer Research Program with interviewer Charlie Rose, discussing the paradigm shift in cancer discoveries and understanding that are occurring at that moment in labs around the world, and that they predicted would continue to bear significant fruit for the following 12 to 24 months - Interview from August 2007

Second half, interview about global communications with  Peter Chernin, President & Chief Operating Officer, News Corp.

 

 

Acupuncture, Looking Back

The week after my first acupuncture treatment, here's the overall report. And YAY, it's very good.

Me, My Pain and the Acupuncturist

The acupuncture office this morning wasn't on my list for cancer treatment but since I think cancer is a more systemic issue, it's all part of the story.

My hip has been giving me a lot of pain, increasing in the past two weeks since I came home from Austin.  On a scale from one to ten it's bordering on a nine - which for me is saying something since I don't like to admit to an 8 since it's too close to 9.

I'd gone past the normal pain meds to my Rx Ultram and it wasn't doing a thing.

Never having been to an acupuncturist I didn't know what to expect. But here's the story in an after acupuncture report.

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.

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!

Your Power of Communication: SharingHope.tv

Disclaimer: 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.

Treading Water

What's the status of chemo? What am I waiting for? Are the test results back yet? How am I feeling? What's happening?

I wish I could tell you.

It was a very quick diagnosis process and I sped headlong into mastectomy which I don't regret, and into beginning the first phase of reconstruction - a step that I seem to rethink more and more. And then there's the question: What's next?

So shocked when I saw the 10 year prognosis from the oncologist that I said YES to chemotherapy within minutes, I was lucky enough to need further testing and clearance from other specialists and that slowed the process down.  Considering my general health and preexisting conditions maybe it needs to come to a dead stop for longer than an hour or a day and the options versus the issues involved thought through in a less emotional manner.

So I've called my own time out.

I'm in a holding pattern. Treading water. Thinking. Waiting.

Maybe I'm looking for a sign or a bit of insight or something I will recognize when I see it. While I'm waiting I made a video to talk about it.

Videoland: Hollywood In Your Pocket

When she insisted that I absolutely MUST have a flipcam, my friend and partner in what can we think up next, Connie Reece, was sure that I needed to do it to show people what it was really like to live with cancer.

Holy cats, Connie, I was thinking. This is just not something I'm comfortable doing. But do it I did, and am, and now it's not so strange anymore. I'll get better with it.

One of the reasons why I'll get better at it is reading people's reactions. They make me know I need to keep on keeping on.

"I now consider someone like Susan Reynolds. . . .  totally appreciate her willingness to share her "hard" times, as well as those days when she is full of energy and hope. I can handle a hard day, just like she can. It gives me strength to face the "strange" and "sad" stuff just watching her whip out her new video cam and have the sheer guts to look us in the face and say: "I'm not doing so well today...". Girl, you give me a gift, every time you do that!

I don't really know the blogger who calls herself CyberGal except via a few conversations on twitter or her Blog. But I hear what she's saying when she wrote that because I could say the same thing about other people at different stages of my life.

So if what I do is helpful to one person I'll try to get better at it by doing it more often.

It feels silly sometimes. Like I'm taking it all too seriously. But I'll have to find a way that works for me and might be helpful to someone else along the way. That seems to be a hard path for me to find comfortable.