Two beloved voices silenced

Mtngrl · 02-07-2012, 06:02 PM

Since joining this club nobody wants to be in, I've taken an interest in the world of breast cancer blogging and twittering. There are some amazing people letting the world know about their experiences, and about the results of their inquiries into the world of "pink ribbon culture." Some of them are interested observers, but many are living with (and dying from) breast cancer.

Yesterday morning I learned that Rachel, who blogged at "Cancer Culture Chronicles," had died. She was 42. She did meticulous work analyzing the annual reports of Susan G. Komen for the Cure, and posted her analysis. It was eye-opening. Then yesterday afternoon I learned that Susan, who blogged at "Toddler Planet," also died after five years with inflammatory breast cancer. I started crying. Susan was an astrophysicist with two small sons. She mostly talked about her boys, and her struggles to give them as many good moments with her as she could. Both women were frank about what they were going through, and although their searing honesty was sometimes hard to take,I admired them both, and had come to love them. Rachel was snarky, feisty, and wickedly funny. She did not go gentle into that good night.

We are in a culture that hides the truth about death and disease. Really, there's nothing abnormal about dying. For many people the whole process takes a long time and involves a lot of pain and suffering (whether or not they have cancer.) But it gets hushed up and hidden away, and that makes it seem pathological.

I'm reminded of a TED-X talk I saw recently. A young woman named Tanya, who had breast cancer twice and had a double mastectomy, went to the survivors' tent at a Komen event and took off her shirt. She was asked to leave. Although I'm glad federal law requires insurance companies to pay for reconstruction, I sometimes wonder how the whole "awareness" picture would look if there were more one-breasted and no-breasted women walking around.

The problem with advocacy for metastatic cancer is the people who are most passionate about it keep dying. Somebody needs to pick up the banners that Rachel and Susan were forced to drop.

Mtngrl · 02-07-2012, 08:10 PM

Here is Rachel's obituary: http://cancerculturenow.blogspot.com/

BonnieR · 02-07-2012, 09:34 PM

Thank you for telling us. I read some of Rachel's blog. Her observations on Koman were especially interesting under current circumstances.
What a sad loss of 2 fine women.
Keep the faith

karen z · 02-07-2012, 10:04 PM

Amy,
Thank you for your beautiful tribute and your important thoughts.
k

Jackie07 · 02-08-2012, 12:30 AM

Thank you, Amy.

Found tributes to Susan at http://www.care2.com/causes/one-blog...an-niebur.html after reading the cancer culture chronicles blog by Rachel http://cancerculturenow.blogspot.com/
I'm saddened by the passing of these two talented young women, yet at the same time inspired by their spirit and action.

The overall picture of breast cancer has not changed much according to recent statistics. Her2 breast cancer is one of the few subgroups that have seen improvements thanks to Herceptin and other targeted therapies.

"It's not the years of your life, but the life in your years that count." These two ladies certainly have lived their life well...

sarah · 02-08-2012, 03:02 AM

yes, sad. has an progress been made on inflammatory bc? a best friend died of it at 58, she was my dentist as well. She lived fully each day despite losing her husband tragically soon after diagnosis. She was also HER2+

bejuce · 02-08-2012, 02:51 PM

Thanks for posting this. I followed Susan's journey on her blog almost daily and when I saw her last post and nothing for 2 weeks, I was fearing the worst. I found out last night and was quickly into a mind funk. It was hard to get up this morning. Susan was such an inspiration and a brilliant NASA scientist as well. Why does this have to happen to people??? She left 2 young boys, a husband, parents, in-laws, and many friends who loved her.

I went to my kickboxing class an hour ago and with every punch and kick I thought of this stupid disease and how much it devastates people's lives. Where is all the research money going to??? You'd think that a cure would be found by now, or at least a controlling mechanism that enables people to live with the disease until their kids are grown. There was so much progress made in AIDS, and yes, so much progress made in HER-2+ BC, but for inflammatory cases, it's still the luck of the draw. So very sad.

Mtngrl · 02-08-2012, 04:24 PM

I think we need two things. First we need people to know that this disease is not just "life-threatening" (but only if you don't get regular mammograms), as the predominate public message indicates, but lethal. The majority of people who get it either start at or eventually end up at stage iv, and the vast majority of them die from breast cancer. The effect of the prevailing view is to marginalize and blame the people who die. Komen's repetition of the 98% five year survival rate obscures the truth that right now we don't know what causes it and we don't know how to cure it. Routine screening hasn't done much, if anything, to lower the death rate. Overall survival has improved, but because of discontinuing HRT and better treatments, not from early detection.

The other thing that's needed is for death to be normalized and brought out of the closet. I'm glad there's no longer a social stigma to cancer. I appreciate Komen and others who made it acceptable to say the words "breast cancer" in public, in mixed company. For me to get this second wish, my first wish has to be granted. People with metastatic or recurrent breast cancer should not be silenced, ostracized, or even "celebrated" in ways that have the effect of denying their suffering--from the treatment, which after all this time is still "slash, burn and poison"--and from the disease itself. It's not that I want to whine about it or call extra attention to myself. I just want people to get over their fear of mortality.

If people really knew how helpless we are against breast cancer right now, maybe they'd engage in real activism, not just buy things with pink ribbons on them or sign up for walks and runs. Maybe they'd ask questions. Maybe they'd notice that the current "cancer industrial complex" has no particular incentive to stop this treadmill. I am not accusing anyone of ill intent. I'm just saying there are big companies that BOTH pollute and make money from cancer drugs or equipment. I'm saying it's a multi-billion dollar industry. Their hearts may very well be in the right place. I'm concerned about the results. That's what matters to me.

Laurel · 02-08-2012, 05:08 PM

Amy,

You have touched a nerve with me. I hope this is not too off topic, but it seems I have a need to express this so here goes!

You spoke to me when you pondered what the world would look like if we all chose to face the world one breasted, or no breasted. How unspeakably brave....But what WOULD that look like????? I wonder how many women would we see on any given day in any given location or forum? How many would we see at work? In the supermarket? At church? In the park?

That prompts me to express something that has bothered me for quite some time. Why is it you cannot walk two feet to your left or to your right without encountering a fellow survivor, daughter of a survivor, son of a survivor, husband of a survivor... and yet see so few on Television? If we are 1 degree from a fellow sufferer, why are there not more passionate advocates out there in Hollywood or politics declaring themselves a member of our club? Who do you know who is FAMOUS who has Her2 + breast cancer? Can you name ONE? I cannot. Yet, I KNOW there are several out there due to the law of averages and statistics. Thank God for Christine and her courage and that of her husband and daughters. Thank God, literally, for the women who work so hard to keep this site up and running.

I admire Christina Applegate and Guilania Depandi for coming out of the breast cancer closet in recent times and Betty Ford and Nancy Reagan years ago, but what of the hundreds of other famous women who hide in the closet....indefinitely. I understand the initial need to not go public due to shock, panic, and overwhelming fear, but what about after treatment?

If you cannot walk through a supermarket on any given day in any small or large town in the world without crossing the path of AT LEAST 1 B.C. survivor, how can there be so few out there in the media, politics, and Hollywood?

I'm just sayin'.....

sarah · 02-09-2012, 04:20 AM

Actually quite a few have spoken out among others Sharon Stone and Melissa Ethridge and many I can't think of right now.
I think what bothers me more is that more money isn't going into finding a cure and less into administrations and promotions. I like Susan Love's concerns. We need more answers. This site is great for that. The people like Dr. Slamon need the money.

NEDenise · 02-09-2012, 06:33 AM

Amy,
I'm so sorry for your loss. Thank you so much for sharing your thoughts and feelings. I couldn't agree with you more. (big surprise)

I'm so sick of the awareness message. As Laurel pointed out...if there's a single person in this country who hasn't lost a loved one to BC, I'd like to meet them. We're aware already. Move on! Please find a cure.

I don't believe, as some seem to, that there is a conspiracy out there to avoid a cure, and keep the "cancer money mill" running. But I can't believe that the same nation that put a man on the moon in less than 10 years...can't find a cure before we all die from this. Maybe a candidate's lithmus test for election to the House, Senate, or White House should be realated to curing cancer, rather than to so many FAR less life-or-death concerns.

Laurel, as usual, I agree with you too. But, beyond the rich and famous, I think the rest of us need to be more active and vocal too. When Komen tried to un-fund mammograms through Planned Parenthood, the uproar was so great that within 2 days, they had to do a 180, and back away...apologizing as they went.

I wonder if all of us who are only 1 degree (or less) from losing a loved one to BC...if every single one of us...sent an email to our Senators, Representatives, and to the President.

If we each reminded our friends and family to do it too.
Maybe even all in the same week.
Could they really not get the message loud and clear?
Could the media really ignore such an outcry?

Am I crazy (or naive)...or is this a good idea? (okay...my self esteem is a little fragile...if I'm crazy, don't reply...)

Denise

Mtngrl · 02-09-2012, 11:37 AM

Denise,

It's a good idea. There's a Christian group I know of that does nothing but get together and write letters to their elected officials about their concerns (centered on child poverty). No website. No logo. No corporate sponsors. They just put their convictions into personal action. That's far more noble and has far more integrity than the kind of "slacktivism" most people (including an earlier version of me. I have a Race for the Cure Team Captain hat) engage in. As Mother Teresa is supposed to have said, "we aren't called to be successful, we're called to be faithful." That's true of everyone who cares about fellow humans, I think, not just religious people.

Most of the celebrity messages about bc are like Andrea Mitchell's when she was diagnosed and treated. She "had" breast cancer. She now "has a great prognosis." Get a mammogram. It'll save your life. That's the wrong message!!! (So is the "one in 8" risk figure, but that's another conversation.)

Cancer is incredibly complex. We have made progress in the 40 years' war on cancer; there's just a whole lot more to figure out. They used to think it was one disease you got in different parts of your body. Now they know it's hundreds of diseases, maybe thousands. More is being learned all the time, and researchers are linking up.

I also do not believe there's a conspiracy to keep cancer a "chronic disease." I think health care workers, medical equipment suppliers, pharmaceutical companies and researchers are doing the best they can, under the circumstances, and they do it because they want to be healers. I believe even the "big pink" organizations that I criticize are well-intentioned. Nevertheless, they need to hear from people who question the frames they're putting on it. GE plans to spend $1 billion making mammograms nicer. I told them to put the money into basic research. Of course they won't. They make mammography equipment. They can quantify a "return on investment" to their shareholders from the warmer, cozier, prettier less awful mammography centers they build. If they funded research that led to a cure, there would be only psychic rewards, not money. It's in that sense that I believe the cure simply cannot come from the cancer industry. They aren't doing anything wrong. Capitalism is fine. Profit is fine. It creates jobs. It helps. But it is not set up to serve a larger public good.

Komen could redeem itself for me if it started (a) lobbying FOR health care reform instead of against it, (b) funding more research into causes and prevention, (c) refusing donations from organizations that make any money off of known carcinogens, and (d) hiring a truly diverse, truly independent, truly bipartisan board. Of course hell will freeze over before any of that happens, but there are organizations that do pass that test.

Those of us who have breast cancer have to think about ourselves, our families, and our survival, of course. But there are also legacy issues. These two bloggers worked to change the conversation, to shed light on the dominant narrative, and to get people thinking differently. I am so grateful that, in the midst of their own suffering and dying, they found a way to do that. That's worth 100 celebrities touting a pinkified message of "hope."

BonnieR · 02-09-2012, 11:54 AM

Amy, Denise, the rest of you....I am honored to be in your ranks. You are speaking eloquently. I am inspired.
Keep the faith.

sarah · 02-10-2012, 09:33 AM

Amy and Denise you spoke for a lot of us. We need money spent on research not awareness - you have to live in a cave not to be aware! we need a cure. Komen has only backed off for a year so that the politics will die down. It's a shame because Planned parenthood is about so much more than abortion which is such a small part of their work but.... politics is politics
Amy put it well when she said "Komen could redeem itself for me if it started (a) lobbying FOR health care reform instead of against it, (b) funding more research into causes and prevention, (c) refusing donations from organizations that make any money off of known carcinogens, and (d) hiring a truly diverse, truly independent, truly bipartisan board. Of course hell will freeze over before any of that happens, but there are organizations that do pass that test." Maybe that Christian group you know will write enough letters to Komen and others to help them understand and fund research instead of harrassing cancer groups for using pink!!! or the words "for the cure!!"
Let's hope we can get the word out and people will listen. This disease has and continues to kill far too many people.
health and happiness
sarah

Mtngrl · 02-10-2012, 03:01 PM

Here's a beautiful tribute to both Rachel and Susan, with a hauntingly beautiful poem by Adrienne Rich. Sometimes prose just doesn't cut it. http://accidentalamazon.com/blog/201...words-live-on/

chemteach · 02-11-2012, 07:21 AM

All that you say in the posts above has educated me. I am part of the general public that rushes through the pink stuff without digging deeper into where those funds go. I too, did the Komen Race in Lubbock, TX with my family just after my mastectomy. Lots of pink survivor shirts, but I really had no idea what else was going on. I think most people need to feel that they are doing something, and maybe Komen and pinkness is good for that. Because of my diagnosis, I have educated myself by reading your posts, following your links, and reading your stories. Rachel and Susan made me question what I thought was the right thing to do, and I am grateful and will spread the word.

sarah · 02-11-2012, 09:26 AM

thanks Amy for posting this.
It brings to mind the idea of making a list of organisations that are devoted to finding a cure instead of the regular fluffy ones. Do you want to start such a list. We need to support and promote those organisations and researchers and those that give direct support and information. (such as this site and breastcaner.org).
health and happiness
sarah

BonnieR · 02-11-2012, 11:46 AM

When I was a newcomer to cancer, I embraced the pink ribbon concept. The "awareness" and identification helped me accept the cancer and feel I was part of a movement. Over time, I began wondering about the commercialism of it all
I heard Dr Susan Love speak and she made so much sense. She talked of prevention. And new ideas for intervention. I joined her Army of Women and feel good being able to contribute to her research.
In view of recent developments, I am going to concentrate my fund raising and donating to grass roots programs right here in my community. There are non-profits that pay for services that woman in crises need on a case by case basis. The chemo drugs, rent, free mammograms. No advertising, no solisiting, no address labels in the mail. And I continue to be a Navigator at the local cancer center, helping newcomers get through treatment. And will wait for the pink dust to settle.
Keep the faith.

Rich66 · 02-12-2012, 12:19 AM

No offense to the Her2 focused site I post this on.
But..
There are a lot of different cancers out there. Who's organizing the race for a cure to prostate cancer? Ovarian cancer? Pancreatic cancer?
Spend money focusing on any achilles heels to the variety of cancers or we're destined to flail forever.

norkdo · 02-12-2012, 01:57 AM

amy: many thanks for posting this beautifully written tribute on the passing of those two women who were wise and resourceful and working hard for bc while fighting it themselves.

i havent been on this site for awhile and i just saw this now. bonnie you said it so elegantly: denise, amy, all of you make me so honoured to be in your ranks.

denise: lmao : we are aware already let's get on with it. find a damn cure already.

To get to the goal we want (donated money to be spent on cure not on advertising, and hospital buildings, and building new physical space on hospital campuses, etc) I think we have to challenge, by letter writing, those fundraising campaigns. Fundraisers slap any ole optimistic tripe up to get money for their hospitals. They ain't thinkin'. my friend writes for fundraising campaigns by hospitals. Even if the hospital just needs to build another bldg on campus, they are capable of trotting out all kinds of tripe to support the fundraising drive, cos "hey give this hospital a new building" isn't as heart rending as "Race for the cure for breast cancer". we need to know who exactly gets the dollars donated by the public.

I agree, denise and amy and laurel, we need awareness that does not render the public smug ("honey did u remember to contribute to breast cancer this month? What? Yes? Oh good that's taken care of." and "I do my mammogram every year so I know I will never die of breast cancer.") but to offer a place where grieving children/friends/spouses of b.c. survivors and as many individuals as possible, can focus their compassion and generosity productively, not wastefully. how about we plan a giant march on Gentech? LOL. no but really. how do we get the researchers working on cures higher up the financially important list? Komen, for instance sucks at that.

change of topic
re: Amy's first post above
thank u so much for bringing this up.
there are levels within the appearance v.s. reality weirdness we have all been forced into. worse, i know, in our mothers' days, and grandmas' days for sure. but this weirdness is what u don't know about before getting b.c. and once you do then weird is the new normal. sometiimes i feel like someone in that movie Body Snatchers.

level one, as i call it is superficial appearance vs reality stuff. As we sport our new balding looks during and post chemo, for example, all the other women who went through what we have, sometimes salute us and reveal themselves as fellow survivors.

it happened to me this past week in the plastic surgeon's office. a b.c survivor, six yrs past her reconstruction actually guessed me correctly as a b.c. person by my post chemo hairdo!! or perhaps by my unbalanced chest??? she ended up showing me her entire reconstructed breast in the waiting room! i was glad she did becos i had just remarked that i was going to ask the surgeon what the tattooes of nipples end up looking like. just one example of the weird world we have been dropped into. and i was so honoured by her help. more info is better info.

re: the topless breastless woman who was unfortunately thrown out of the Komen tent
I ask why was she threatening to the Komen women? Komen women should have known better. the topless gesture, being radical, yes, and not particularly "normal" was, I suppose, a challenge to the whole concept of normal.

Those of us with b.c. don't get to choose what is normal anymore. "Normal" is now two large men adjusting my naked torso between them daily on a radiation bed, as if i am no longer a living breathing woman. I still have a nipple on one breast to be embarrassed about. I still feel embarrassed half naked in the hands of two big radiation techs. I don't get to choose. I have become a non sexualized thing now, to them or anyone for that matter. but i am only speaking for the decorum in my particular hospital.

we don't choose our new, imposed weirdness. The ugly deformity of my chest was thrust upon me. We didn't ask to be radically altered, and made newly abnormal. But should we be outcasts when one in eight women will have those weird slices across their torsos in lieu of breasts? My mom chose not to reconstruct so i saw her scar each morning as I watched her make her face up half dressed at her vanity, since i was ten. Even for me, who should have been used to it, I find it traumatic every time I see myself in the mirror after the bath.
when I see other women at the cancer center, now that I go for my thirty radiations, in the same lopsided shirts with the short hair I feel like I am living a science fiction new reality...the one in eight women who are bald and one breasted.

But a deeper level of the Appearance vs Reality weirdness comes when people say "oh b.c. is practically cured now like Aids. It's at vaccine level almost" I have heard that from my sister and from a chemo nurse. You tell them b.c deaths have not improved too much (coupla percent yes) for sixty five years. Billions donated to it. Still no significant change in death rate. they say "that's not what i heard." and they shake it off. but I reply that Linda mccartney died from it. elizabeth edwards died. both women caught it early through mammograms and both women really well connected and rich. as amy says above, the deaths occur regardless of one catching it at stage zero or stage four. hey, this stuff travels, ok? they're called lymph nodes.

Thank you amy for this thread. I really want to thank you for it. Sometimes we have to prepare to dwell on the negative in order to spark change. I will reread all the posts on here over and over in the next few days as they are so thought provoking. amy you are a poet. love reading your wise thoughts.