Two beloved voices silenced

[norkdo]

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.

[Rich66]

Wow,
Sorry you took it that way. If you're cool with a competition between cancers, so be it. Maybe having dealt with my Dad's prostate cancer simultaneously with my mom's breast cancer, shortly after my siter-in-law's Ovarian cancer...I have my own personal perspective. Who's "turn" is it? Hell..every cancer patient's turn.
I happen to think the most benefit for all will happen when the focus is on commonality between cancers and ways to use that against cancer. As an a example, your donations to AIDS research years ago may have indirectly helped breast cancer. Viracept, an early AIDS drug has been shown to have effect against breast cancer cells as well as aiding radiation in pancreatic cancers. Yet, I don't hear much more about it despite an antiviral approach with available and relatively inexpensive meds would be a breakthrough and potentially suggest how it starts. Personally, I get discouraged, not encouraged, when focus goes to counting the myriad diseases within a disease. That strikes me as great for cell labs..but not so great for patients. The research dollars are limited..best to use what's there in a way that benefits the most cancer patients.

[Laurel]

Amy,

I too wonder if the whole "pink" movement does not offer up the impression that all breast cancer is these days is a bit of radiation following a not very disfiguring lumpectomy, and a few years of Tamoxifen and off we all go for a long, albeit modestly interrupted by B.C., life. Of course, we here on Her2Support know that is NOT the case, although I am sure we all fervently wish it was. I do appreciate the effort to "speak" through all the pink to make the general public more aware of B.C. Years ago when my Aunt Olive died of this evil disease in 1973 breast cancer was still discussed in low voices if at all.

Goodness, when you think about the social stigma of cancer in general and especially reproductive cancers we have come a long way in acknowledging their existence. There is willingness to discuss prostate cancer and its aftermath, not much mind you, but more than previously. We still whisper about the loss of sexual function that is common with prostate cancer. Actually, come to think of it, even now we only elude to the loss of sexual function that is associated with the treatment of hormone positive B.C.

I will say that Rich is being honest when he asks about support for the treatment of all cancers. Surprisingly so many are interrelated. Herceptin has been used with other cancers that are Her2 positive and has spawned a whole generation of new monoclonal research into beating cancer by not slashing and burning. Conversely, more research is going into other methods, such as nano delivery systems, etc., to beat back the many headed hydra that is cancer.

I have a dear friend who developed a small area on the underside of his 2nd toe. He showed it to his physician at his annual physical. His G.P. shrugged it off as nothing to be concerned about. Two years later he showed it again to another physician in the practice at his annual and this physician was deeply concerned stating he was certain it was malignant melanoma. Sadly, that M.D. was correct. Now my friend has metastatic melanoma which some of you may know is unbelievably deadly. I urged him to get into a trial and he is now down at NCI undergoing a tough, tough treatment with a 30% effective rate which sounds abysmal but in fact is huge in the war against melanoma. At present his prognosis is still very bleak.

We in the cancer community are just that, a community. We belong arm in arm yoked by our mutual accursed state having been called to personally battle this scourge. To all the many warriors pink or not, I am so grateful to their dedication and commitment to this war.

[suzan w]

Thank you for this thread...very important stuff. As a 'no-breasted woman' I need courage and support to ''take my shirt off'.