My Great Breast Cancer Adventure

Between 50 and Death

I'm not a New York lady, nor have I ever lived in NYC. But I still get a real kick out of this video! I'm wearing two necklaces today instead of just one...and am working up to five or six at at time. Also mulling over the intriguing idea of going wild and delving into the realm of cacamamey (sp?) hats and eyeglasses.

Internet blackout! - Stop Online Piracy Act - Salon.com

Internet blackout! - Stop Online Piracy Act - Salon.com

I hope everyone takes the time to read this. Scary stuff for those of us who believe in the Internet as a source of great freedom and communication for all those who previously had no voice in the world, or voices that could not compete with the Big Authoritarian Powers - governments, corporations, etc.

I would rather people be able to "pirate" my photos and even my writing than have the Internet policed and controlled as it would be if these acts are passed in Congress.

About Enjoying Every Sandwich

I think about life and living every day. These days, those thoughts include more about death and dying, which are not separate from life and living. Life includes death. Living includes dying.

I can say this with a smidgen more confidence now than yesterday. My hope is that each day, I grow another smidgen of confidence when it comes to this topic. I can be a real slow learner, but I plod along nevertheless, smidgen by smidgen.

Today I went back to the article I posted yesterday and read some of the comments at the bottom. One of those comments included a link to this YouTube video. Short and sweet (bittersweet). But for me, helpful.

How Doctors Die « Zócalo Public Square

It's been a while since I've posted here, obviously. Nov. 11th, to be exact. Wow. Two months! But now you know that I am still here, not dead, not even sick or miserable or suffering from some new awful medication. I'm in another "good" phase of having breast cancer. And I'm not being sarcastic. I really do see it, now, as a long-term (hopefully) experience that is full of ups and downs, good phases and not so good phases.

The whole first half of 2011 was a very bad phase for me. Most of the second half of 2011 was a successful, although very slow-going, attempt to get out of the bad phase rather than die.

So now I am out of the bad phase. Not out of the woods, but out of the bad phase. Which I am very happy about. It's getting easier and easier to take life "one day at a time." I am overjoyed to be able to post this post. Overjoyed to be able to sit (not lay) on my couch . . . and to do so without horrible discomfort or pain. In short, I am overjoyed that I am back to living a relatively normal life - driving a car, working to earn a living, seeing my friends, enjoying my relationship with Jack (and my beloved pets), doing photography, writing, all of it. Just being able to get dressed and leave my house again is a huge wonderful thing.

What prompted me to post something today was the following article that one of my fellow "breast cancer discussion list" members forwarded to the list. It's easy to read and was, for me, compelling. It makes so much sense! I hope every one of you will read it and benefit from it. Here's how it starts:

Years ago, Charlie, a highly respected orthopedist and a mentor of mine, found a lump in his stomach. He had a surgeon explore the area, and the diagnosis was pancreatic cancer. This surgeon was one of the best in the country. He had even invented a new procedure for this exact cancer that could triple a patient’s five-year-survival odds—from 5 percent to 15 percent—albeit with a poor quality of life. Charlie was uninterested. He went home the next day, closed his practice, and never set foot in a hospital again. He focused on spending time with family and feeling as good as possible. Several months later, he died at home. He got no chemotherapy, radiation, or surgical treatment. Medicare didn’t spend much on him.

Just go HERE to read the rest of the piece, which was written by Dr. Ken Murray:  zocalopublicsquare.org

so beautiful and so terrible...

via wavesworld.typepad.com

I'd like to share with you the first paragraph (and a link to the rest) of my friend Wave Geber's blog, which she kept posting to until five days before her death from breast cancer last Friday Nov. 4th. I am still amazed at how she managed to continue writing and sharing her experience(s), with such honesty and openness and depth. And I think she'd like to have her words live on:

Oct. 30th, 2011

Yesterday would have to go down as one of the most emotionally touching times of my life. i can't believe it could get more intense than it has been, but it does...mr dave brought his guitar from new york but i didn't think i could sing anything. mitchell pushed it a bit and i laid here propped up while dave learned "song for the asking"...i sang with very little voice strength but somehow it came out sounding beautiful and sweet. then we tried "make you feel my love", and i looked up and dave was crying and mitchell was crying and i had to put my hand up so that i couldn't see them so i could finish the song. there was so much love and friendship in this room, and a deep deep sadness. we sang for an hour. each song seemed to say everything about my relationship with mitchell, our friendship with dave, and the beauty of life. i knew it was my last singing time and so did they, and mitchell didn't want it to end. these men aren't the crying types but were sobbing and tissues were flying everywhere. a most memorable gig...and an honor to share it with dave and mitchell...

Continue reading Wave's blog here:

via wavesworld.typepad.com

Cells' 'neighborhood' can help prevent breast cancer

Cells' 'neighborhood' can help prevent breast cancer

Good article. Makes me realize, once again, how remiss I have been in my ongoing reluctance to exercise regularly. I used to walk my dog Olivia three times a week for an hour, going up hills and down. But I stopped doing that when I became sick from taking the drug Tamoxifen, and by the time I felt better again after lying around for months letting my muscles get flabby, I didn't start walking Olivia again. I let someone else do it, because when I did it, my general flabby weakness caused me to hurt and feel too discouraged to keep walking. Thus: A vicious cycle. One that I need to overcome!

The SCAR Project - Images

The SCAR Project - Images

These images of real women and what breast cancer does to their bodies is why I am more interested in spending my time doing serious research about breast cancer treatments.

I believe that we women need to empower ourselves by doing more than wearing and waving pink ribbons...more than raising money for organizations that we actually know very little about in terms of what they do with the money that gets raised in the name of "breast cancer awareness." What does that MEAN, really? Where does the money go? Do we know where we'd most like it to go? Do we have any true knowledge re: what would be the best use of the money? How much have we educated ourselves about breast cancer, really?

For example, have you heard the latest news about mammograms and how ineffective they are for dense-breasted women? Are you "aware" of the new research coming to light about how we should reconsider the standard recommendation to have yearly mammograms? We need to do (and know) more than just "being aware" that breast cancer exists. We need to SEE the images of women with mutilated bodies.

We need to go to levels of awareness that take us beyond pink ribbons. 

 

 

 

Depressing News: Obama’s crackdown on medical marijuana - Salon.com

Back in July, I interviewed a drug policy expert about an apparent change in Justice Department policy that suggested a crackdown on medical marijuana — which is legal in many states but illegal under federal law — might be coming.

Full article here:

via www.salon.com

Cancer Bitch - greenheron - Open Salon

It is October. Again. Pink ribbons. Heart wrenching stories of the stricken. Images of courageous smiling bald headed women in pink T shirts. Companies that donate a percentage of product proceeds to research if you buy this or that shampoo, yogurt, deodorant, or spaghetti sauce. Everyone gets on board the pink boat, unified by the desire to cure cancer.   

Cancer Bitches ride a different boat. Many of us dread October. We won’t tell you that. We would seem angry ingrates for your kindness and concern, so we quietly put our heads down until it is over. We endure the media voices speaking in hushed low tones, using the lexicon of war: battle, warrior, survivor, victim, courage. We walk down streets and supermarket aisles festooned with pink ribbons. We skip article after breast cancer awareness article that highlights anti-cancer diets, anti-cancer exercise, anti-cancer vitamins, recent anti-cancer discoveries, coffee/wine/green tea/chocolate/aspirin/tumeric. 

Read full article (post) here:

via open.salon.com

Me: It's well worth the read. I'm often a Cancer Bitch too, and I frequently grapple with many of the same issues that are brought up in "greenheron's" piece. Once you are diagnosed with something like BC, your whole social world transforms in order to accommodate (whether you like it or not) this new facet of yourself that everyone you know is whispering about, worried about, curious about, sorry about, flipped out about, optimistic about, pessimistic about, wanting to give you advice about...or even not giving a whit about. This new social scenario can be quite a challenge to navigate.

And there's more to bitch about, too! Stuff I have not touched on much, in this blog (hard to believe I haven't bitched about every single possible bitchable thing there is in relation to BC, but it's true, greenheron shines the light on a few things that I have neglected to properly bitch about!

Musings on Love, Sex & Confusion...from the Moonlight Cafe - Jane Underwood - Open Salon

It was somewhere around the year 2000, give or take a year or two this way or that, and I thought, Who has time for cafes anymore? Sure, I had once hung out at cafes writing in my journals, pre-Wi Fi, but that had been back in my free-spirited twenties, before I hit the sleep-deprived haggard struggling single-mom decade of my thirties, followed by the catch-up-on-your-never-materialized-career decade of my forties.

via open.salon.com

In Thailand, an Innovative Fight Against Cervical Cancer - NYTimes.com

In Thailand, an Innovative Fight Against Cervical Cancer - NYTimes.com

I am posting this link to an article not about breast cancer but about cervical cancer. Why? Because it's a great example of how simple, relatively inexpensive solutions CAN be found to fight cancer. Doctors here often poo-poo any "simple" ideas that are not promoted by the all-powerful health insurance/pharmaceutical corporations (who prefer to offer the high-tech expensive options, of course).

Doctors, Doctors, Who's at the Doctor's?

I believe this is called "cross-posting."  (???). It's for industrious but also lazy people who are trying to keep more than one blog going (industrious) but who also don't want to keep more than one blog going (lazy). So they put a link in one blog that takes you to their other blog, like I'm doing now:

My Open Salon Blog Post

CHANGING: MORPHING INTO MATURITY - Ande Bliss - Open Salon

 I haven’t done much to make me look better. I’ve done a whole lot to make me feel better. It took a lot of living for me to get to look like the mature woman in the mirror. At my age it is about remaining vertical, as well as vital. It is balancing act and here is what think is going on.

via open.salon.com

I recently went crazy and started yet another blog on Open Salon (a blogger's haven on Salon.com magazine). I've done five or six posts and have been reading other blog posts there. I read this one today and enjoyed it (in a rueful sort of way).

Flashback to August 2010 - A Letter to The Great Mystery

Poking around this morning in a folder filled with old "daily writes," I came across this letter that I wrote to the Great Mystery, a bit over a year ago, shortly before my descent into a year that was mostly comprised of Hell.

I think I'll share it (again) now that I have exited Hell for a while, I hope. Beware, it includes some cuss words that you might find offensive. Sorry, but I am not going to censor myself.

August 2010

Dear Great Mystery,

I want to thank you for letting the sun come out today, yesterday, and the day before yesterday. It has been an unusually cold summer, overall, and I know that the gray chill was depressing me, but I didn't realize how much until you gave us the gift of this outburst of sun. I'm still depressed and angry about all sorts of things right now, but less so . . .  and that is thanks to this glorious sunshine and warmth. I even ordered a freaking hammock, as you know.  It has been downright hot, some would say uncomfortably so, but I am not complaining. I will take all the heat I can get.

Thanks, too, for suggesting that memoir or personal essay title, Land of the Floor.

In addition to thanking you, I hope you won't mind if I also put out a request or two. You aren't a God per se, so I don't know if you grant requests, but if by some chance you do, here goes. I'm confused. Of course, I'm always confused on some level, but right now I'm especially confused. To be more specific, I'm confused about how to handle the rising tumor marker numbers.

Xeloda Update and All that Goes with It....

A week ago I had another "check-in" appointment with my oncologist. He looked at my latest blood tests: CBC and tumor markers (CA15-3 and CEA) and said they were great, as in my grade would be an A+ if were in a school for cancer patients. My tumor markers are continuing to decrease at a very good rate. In three months my CA15-3 has gone down from 1005 to 440. Normal would be close to zero. And my CEA has gone down from around 100 to 35'ish. Again, normal would be close to zero. (However, it's good to keep in mind that there are very healthy people whose numbers are much higher than zero, and there are very sick people whose numbers are in the normal range. So....as I said in an earlier post, tumor markers are best used mainly as a way to see how your disease is "trending." Nothing more.

Living with Cancer - And Even Writing About It

I admit, I do at times get sick of trying to keep this blog going. Must I really continue to write about it (my breast cancer)? Well, no. Nobody is holding a gun to my head. I could stop. Could just close it down and get on with leading a more private life. Not this glaring, blaring self-exposure. Why do I do it? Why be this open book for all to see?

I do some version of this post on a fairly regular basis. But here I am again, still posting, even if not every day.  I guess I sorta feel like: Shit, I started this thing, I committed to it, and now I need to stick to my commitment. Because...because... it helps me cope, and I hope it helps a few others to cope. Or to better understand what this disease is like.

Exercise Called "Wonder Drug" for Cancer patients

(CBS) The latest "wonder drug" for cancer isn't a drug at all - but exercise. That's what a British cancer charity had to say in a new report detailing the benefits of exercise for cancer patients. . .

. . . ."Cancer patients would be shocked if they knew just how much of a benefit physical activity could have on their recovery and long term health," Ciaran Devane, chief executive of Macmillan Cancer Support, said in a written statement.

Macmillan's "Move More" report looked at 60 studies and surveyed over 400 health professionals to show how important exercise was to cancer treatment.

The report said doing recommended levels of 150 minutes per week could reduce a breast cancer patient's risk of recurrence or dying by 40 percent. . .

Read full article here:

via www.cbsnews.com

Compassion & Choices: End of Life Care

Here's a copy of an email I got today from an organization that I "joined" and have a lot of respect for. So I am passing it on to you:


Dear Jane,

Margaret Furlong went to the hospital armed with her advance directive. It stated her wishes clearly: she wanted no elaborate, invasive treatment at life’s end.

But her doctor and his hospital refused Margaret’s wishes. They delivered invasive treatment and forced Margaret to spend her final days in intensive care, tethered to machines and pleading for it all to stop.

The treatment didn’t stop until Margaret died. Her final wish—to have a peaceful, dignified death—was denied.

Do Mammograms Really Make a Difference in Survival?

Are screening mammograms effective in reducing deaths from breast cancer? The mainstream media and the medical-industrial complex would have you believe that mammograms are the best thing you can do to diagnose breast cancer at an early stage. The theory is that an early diagnosis leads to a better treatment outcome.

via drdavidbrownstein.blogspot.com

Health Writing - DeMystifying Medicine for the Masses

Given my six-year intensive foray into the land of doctors, medicine, and disease, I've been reminded of how important it is for SOMEONE to deliver GOOD health and medical information to "the masses." Much of what we read in mainstream newspapers and magazines regarding the lastest medical studies, controversies, and "discoveries" is too often reported by media people who have no idea what they're talking about - not really. They have neither the knowledge nor the expertise that would enable them to responsibly report on the medical and scientific issues of the day. Ditto for television reporters.

Here's one small example. You pick up the newspaper and read an article that says "the study shows that hormone replacement therapy increases a woman's risk for breast cancer."

What the article doesn't say, however, is that this risk was not shown to be  "statistically significant." In other words, if the risk increases by  a very very small percentage, researchers and doctors do not consider it significant. But when lay people read the article, all they think is, "Oh my god, I can't take estrogen because it will increase my risk of breast cancer!"

Wrong. It's WAY more complicated than that.

It's no big deal if you make a mistake reporting on the lastest fashion trend in shoes, but it's a pretty darn big deal to mislead the public if you're reporting on the latest national breast cancer study.