Pinktober Revolution
Comments
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Who said the million men march?
Who will be willing to do the million sistas march?
Straight to the White House....
Ya wanna make a statement here ya go!!!!!
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Barbe,
As I said, I think I did a lousy job of verbalizing my thoughts. I apologize for that. When I read about the Susan Love program, which from most accounts is a "good" one, saying that they are focused on "the ducts" I can't help but wonder how that will help the 10% of us with ILC.
That is part of the isolation I feel. Even more stems from the fact that I have a dual pathology. Knowing that even if they find a cure for ILC, I still have to deal with non-Hodgkin's lymphoma, kind of adds a whole 'nother level to my angst. At least on the bad days. Especially when the Pink brigade appears to have everyone thinking that with a cute shirt and positive attitude BC is not that big of a deal.
There just doesn't seem to be a niche for me. And since I was dx'd last fall, this thread kind of got me thinking.
Ok, self-pity party over. :-)0 -
Gracie1 --Not sure if my post was the problem for you wanting to leave. I do believe that the only way to resolving problems is to talk ---or perhaps the best versus only. If we don't understand their position, how can we develop thoughts regarding what has value and what doesn't. I agree I see no value in runs, I loved Pink before I became a statistic. I have learned more about reading BCo comments than any other source.
I don't know if the analogy that I'm going to try to make has any relavence. In the 70's at the hospital that I worked at , the day before a strike, Word went out that the nurses were going out on strike. What the group leading the movement didn't do was involve the people in my department, which was the OR. So, a strike movement surprised us. Some of the nurses in my department decided to strike. I asked those that were going out, What are the complaints, why are they striking. Not one could explain to me why they were going to strike. My response was why then if you have no idea what the issues are can you make the decision to strike. The response for each was basically the same--b/c the rest are. I don't believe in goose stepping, I didn't strike. Had they involved us in the process or made us aware of the issues by a simple flyer that caused them to make this decision , I may have made a different decision.
If someone can't explain why they believe in something and the actions they are willing to take to support their beliefs, all that they do is meaningless to me. They are goosestepping.
A debate allows for each to understand the others position. Why I believe that we should have that debate here is that the uniformed may learn each position and make informed choices.
We are convinced of our position, but these words here will be here for along time. If we don't debate, those that come at a distant time , new to the situation--a newbie--- with an inquiring mind may see this as a closed position of thought.
If no one of the opposite point of view is willing to debate after being invited to present their point of view. It says reams about either 1. they don't have knowledge enough about what they are supporting or 2.we are seen as too threatening to debate with.
Number two is unacceptable to me.
Gracie you have posted many valued comments, hope you reconsider. sassy
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Kestrel----If no one has made you aware The "Leukemia and Lymphoma Society" has grant money available , up to 5000.00$'s. Plus a 150.00$ grant from The local chapter. There is an application process. You can access it through there web site. Google the above mentioned society. If you have trouble figuiring things out the folks on their 800 volunteer line are great at walking you through the process. The grant is tax exempt and doesn't have to be declared as income. My Dh husband went through NHL. The money went a far way in helping to pay bills.
There fiscal year is july ist to june 31st. And will pay bills retroactively to the beginning of their fiscal year. Tremendous organization. I wasn't going to post this on PO, but think I will Never know when someone later may see it. Good Luck. sassy
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rethinking debate position, advice appreciated
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kestrel, my breast cancer is Papillary Carcinoma. Less than 2% of all breast cancers. When I got it, there was only ONE mention of it on Google of an 83 yo women with it!!! Have you ever seen google bring in ONE response??? It was freaky to say the least. Now it is much more known. Not all cancer starts in the ducts. DCIS certainly does, but IBC, LCIS and a lot of IDC doesn't. You are far from being alone. You have many sisters around you.
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Shells, just checked out the tshirts ... I like " if breast cancer is pretty in pink ... Do,you want to see my scars".
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Joanne~
That is a good one0 -
"Think before you Pink"
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Look at the side of the box on any food your eating. All that stuff you can't even pronounce cannot be good for you. And even when I stopped eating any packaged foods and eat only fresh, hormone free food, I find out that they are not just spraying plants with pesticides (one study found 15 different kinds on a single grape) they are now skipping the middle man and beginning to spray corn and other veggie SEEDS. This changes the DNA of the plant. No amount of washing it will get rid of it.
If the government wants to lower health costs, how about subsidizing organic farms, giving tax breaks to stores that have coupons for healthful foods, make healthful food afforable for the masses and banning the the spraying of pesticides on the food we eat and the food that is feed to the animals most people eat. No one product in and of itself may cause cancer, but when you add up all the crap that enters our bodies either through our mouths or our skin (soap, lotions, etc) logically there has to be a cumulative effect.
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mimi, I hate to break it to you, but Monsanto has been genetically modifying seeds since the 1930s-40s to be resistent to pests and drought. NO seeds now except Heritage seeds are "pure". So doens't matter really. You can plant all the gardens you want, but you're still eating modified food. People did die of cancer 2,000 years ago, remember. It's not a new disease. Organic doesn't mean healthy necessarily as Mexico proved years ago when it fertilized it's strawberries with human feces. What a stink THAT made!!
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Barbe- Arghh. I guess they are right, ingnorance really is bliss. So we're pretty much screwed whatever we do, is that the gist of things? If I could eat gluten, I'd go buy a bg 'ol box of Twinkies and have at it.
I know it's not a new disease, but like most things, we've managed to make it worse. I know organic and hormone free are perfect, but it's better than nothing. Although I'll be scrubbing those strawberries like a surgeon, even though we do buy local only.
Ok, I have to go clean up after my broken bubble. Maybe I'll live on the wild side and go lick an unwashed grape.
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Hmmm....seems that post was edited. Perhaps I misunderstood the original.
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Barbe and Mini1, if you want to get REALLY technical about genetically modified foods, that started several thousand years ago when people started selecting and planting grain seeds from those plants that produced the best food and harvest; planting the best resulted in cross-fertilization of the varieties that were strongest, and the next strong generation was selected to be planted, etc. They didn't know they were "gentetically modifying" their food, but that is just exactly what it was. Same thing for the goats, sheep, and cows as they domesticated animals for food, milk, wool. It's just that modern agricultural science has accelerated that process in a BIG way!!! I still try to choose foods with the fewest ingredients, eating whole foods as much as possible, organic when possible, locally grow whenever possible. And in the end, I know I have been exposed to major toxic chemicals for nearly 60 years, including the cigarettes my mother smoked while pregnant, most of the family were smokers throughout my childhood (as was most of America), took Twinkies in my lunch whenever we could persuade my mom to splurge on them, worked in the corn & beans after they were sprayed with insecticide, ran indoors when the mosquito foggers made their rounds of the entire small town where I lived.... etc etc etc. Point is: that is the reality, despite years of protests, letters to congressmen, purchasing power, "doing my bit" for the environment.... Seems like an unwinnable battle.
Also wanted to remind everyone that researchers in England have shown that breast cancer is at least 10 different diseases. Some will have lobular, some ductal, some Paget's.... each of these have a variety of types. There are so many potential causes, how can we prevent it if we don't know the causes? How can treatment be better targeted so that one woman with one type of cancer that responds only to one of the therapies won't be subjected to all the others which cause great harm for some (surgery, chemo, rads, hormonal, targeted, vaccinations....). They don't understand the diseases well enough to know which treatment would be best for each one. So much more research to be done. I truly believe it will take some time, but answers will be found in the genetics of each individual tumor. Research is ongoing in cancer research labs across the country and world.
Some of that research is never published, but is often presented at scientific meetings and conferences. I personally know one researcher who has been unable to get her results published because she has too many other responsibilities at work. There needs to be a mechanism to fund these very bright (and some brilliant) researchers, so they can be freed up to do the research and leave the more mundane things to others. I have no answers to this, just wanted to remind everyone that there ARE people out there who care very much about finding answers (even if many of them don't care all that much about an individual's life). Some of them are interested and intrigued by solving the puzzle, others are out for glory and recognition for themselves, but we can just hope they will eventually find answers. We found answers to infectious diseases, we have found more answers about viruses in the past 40 years, surely we will find answers to cancer.
Sorry about the long posting - guess I just got on a soap box this morning... and am avoiding morning chores and this was more fun. Hugs to all as we begin another week.
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I may have edited it for a spelling area, I don't remember. The origianl one is the one aove that I mentioned the spraying of seeds that are planted and improving health care cost by encouraing farmers to grow more healthful food. Is that what you mean? Barbie was just bursting my bubble by telling me they've been spraying seeds for a long time. :-)
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Not you Mini. I misunderstood someone else's post. My bad.
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Linda, good point to remind us of Darwin's natural selection!!!
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Thank you, Barbe. It is nice to know that even though our diagnosis may be different, the experience is very much the same. I'm just in a strange place right now which I suspect is more about my upcoming 1st "anniversary" than anything else
I struggle with trying to reconcile the dual pathology with the fact that I really am not sick.......yet. On any given day, I can't really say which condition scares me more. I don't do "completely out of my control" very well. Sigh. I can't even find any way to calculate prognosis that considers both conditions......I probably don't want to know.
I just hope I can crawl out of this funk soon......I can barely stand myself at this point.
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kestrelgurl - I am so there with you.
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Kestrelgurl, that remark you made is a slogan in itself.
""".......the Pink brigade appears to have everyone thinking that with a cute shirt and positive attitude BC is not that big of a deal."""
The cancer in lymph nodes deal does set you back. I am not sure what dx you were give.... was the non-hodg lymphoma a seperate dx before or afterthe bc and nodes OR you say non-hdgkins lymphoma because the cancer went into lymph system? For me, it went into system either before or after, we don't know, and I am still treated like all I am dealing with is breast cancer (except by a radiologist specialist in cryoablation who called it what it was and identified what tx could make a difference for me and what would not, which I already knew, love that man for honesty though) From day one, I called it what it was to me, but I will always be dx w bc it seems.
Sassy - your analogy worked for me. And look, I have not been banned for saying Zeneca in my slogan amendment. I was worried.
Veggy, read you note and see you did add assinine doctors under an A in your logan, cool beans, not saying they are all bad but been through enough to say half-and-half.
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Diane,
The ILC and lymphoma were diagnosed at the same time. When they biopsied my lump, they also did a fine needle biopsy of my axilla. The breast lump came back ILC and the axilla came back with no BC but with B-cell lymphoma. All the docs, except for my RO whom I LOVE, said "it's a mistake, we just don't see that".
When they did my BMX, they took 3 lymph nodes and found ITC in two and lymphoma in all. A subsequent bone marrow biopsy (two weeks post BMX and they wanted me to lay on my stomach?!?!?
) confirmed that the lymphoma was in my marrow which they told me makes it officially CLL (chronic lymphocytic leukemia).We don't know what came first. The CLL is currently indolent with decent prognostic indicators and I am also being treated as if all I have is BC although I do have quarterly bloodwork to keep tabs on the CLL.
FWIW, the MO actually told me that if I had to have TWO kinds of cancer, mine weren't too bad. He may be right, but the unknown gets to be a bit overwhelming at times.
To top it off, I've also had squamous cell lesions removed. Appears that skin cancer is the #1 secondary cancer to CLL.
Crazy thing is, I have never felt sick except for the treatment SE's. A bit ironic, no?
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Also, Diane......do you have the same dual pathology? I have only ever heard of one other case. Not happy to have you join me, but feel better that I am not alone. 0
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Kestregurl---I encourage you to make application b/c it can take 4-8 weeks to get approval. Also, there is the gathering of documents, getting the MO to fill out there portions. After the award/approval letter is sent , Money is distributed only by you completing the reimbursement form. Reimbursement either can be sent directly to you when you have paid(copy of proof of payment) or to the provider/pharmacy etc. with copy of bill.
There busiest time of the year is the last 3months of the fiscal year b/c people send reimbursement requests in late. Plus they are dealing with new applications for the next fiscal year. When I first did the app for DH I made two files --the original app and the a file for the app for the next fiscal year. Saves allot of time. Plus wrote the directions on the inside of the file.
Condition changes for us all are a matter of fact regrettfully. Having the approval in place avoids having to attempt it when things get chaotic. Again I'm going to post this on PO b/c I have sent this info many times to members who either have one of the covered diseases that the LLS supports or if the member has indicated a family member has the disease. This post may help someone else.If breast cancer and it's mets diseases only had such an organization as the LLS, many BC patients wouldn't be in such financial distress.
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kestregurl, you said it all: "Crazy thing is, I have never felt sick except for the treatment SE's. A bit ironic, no?". If it hadn't been for treatments, I would have had at least a few more months of feeling good. They kept telling me "it's temprorary, it will save your life" and so far neither has been correct - I know we are all going to die anyway, so all they could truly say was that treatment might prolong my life, and that was only a guess. Waiting for scans & results this week to see if I have progressed again.... not looking forward to this week, feeling like a bit of a curmudgeon, re-reading all the posts here and nodding my head in agreement!
Breast Cancer: There is no such thing as "getting back to normal" and the "new normal" sucks!!!
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Oh this is so true, the "new normal" sucks. Sometimes I feel I even have some post traumatic stress from all of this, anyone else?
Kestregurl, you belong here. I see you have posted often, and I do hope you meet more who are in the same place as you, but until that happens, you are safe with us and always welcome with us.
I am not a real T-shirt slogan sort of lady, but now that I have been reading all of these wonderful ideas, I think wearing one to sleep, or around the house would be empowering for me.
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Linda,
I am with you on the few more months 0f feeling good! There's a lot to be said for blissful ignorance.......especially with the CLL which they only found because they were digging around looking for BC. If I were to go in for a check-up today (assuming I did not have the BC) there is nothing that would have indicated lymphoma/leukemia. Unfortunately, now that I know I have it......grrr.
Sometimes when I am beating myself up over that glass of wine or cookie I wasn't strong enough to refuse, I convince myself that it's ok because I would have done it worry-free 10 months ago and not given it a second thought.
You are right.......I don't like the new normal. Not one bit.
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Now there's a shirt. There's no "normal" new or otherwise when you have cancer.
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I am loving this thread, you are all giving such varied and non-judgemental opinions.
The PTSD rings true and I have not long finished my treatment.
I feel when we have breast cancer it is like always standing under a big weight with a frayed rope holding it up. You just never know if the rope is going to snap, so you wait and worry.
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Just when I thought I was rid of pink, my hair has gone pink.
I bought a natural dye hoping to get rid of some of the grey and now it is pink. Luckily I noticed it was changing and washed it out early, so it is a soft pink colour.
Can I have a t'shirt: I hate pink clothes AND pink hair.
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katopet, LOL!!!!!
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