Pink Month Feelings

CypressCynthia
CypressCynthia Member Posts: 4,014 Member

I posted the below feelings on a personal FB site that my sister set up for me.  Danny thought that I should share it here.  Let me know how YOU feel!

 

As October, Breast Cancer Awareness Month, approaches, I have some feelings I would like to share as a breast cancer warrior. Some of them may be controversial or sound critical, but, please remember, I am just ventilating personal feelings and not a spokeswoman for cancer. 
1. Pink is nice. I actually love the color, but, before you purchase something pink, think about it. Probably 99% of the pink merchandise out there says it is to support "breast cancer awareness." This means it benefits the seller and not research or a legitimate charity This year, instead of buying pink socks, think about making a donation to a local cancer center, cancer research or a legitimate charity.
2. I am personally uncomfortable with the "Save the Ta Ta's" and "Save the Hooters" merchandise. It has nothing to do with being a prude, but everything about my feelings that these slogans perpetuate a myth that breasts are what matters most to a breast cancer victim. I would guess most of us are more interested in the illness and deaths that breast cancer causes. 
I have a sense of humor, but far too many suffer and die from this disease and, although progress has been made with early stage breast cancer, very slow progress has been made with Stage 4 (partially because, until very recently <5% was spent on metastatic disease even though 90% with metastases died from the disease). Forget the Ta Ta's and make me healthy!
3. Hearing people say that a mastectomy is a "mutilating" surgery pisses me off. Would anyone tell an amputee that they are mutilated? I personally have had reconstructive surgery (and am happy I did), but no woman should feel pressured to have these surgeries--they are painful and tough surgeries.
4. Do not share "cures" such as kudzu tea with me. Sell it somewhere else. I am busy fighting for my life. It is exhausting for most of us to listen to these stories.
5. Do not "blame the victim." I often hear people thoughtlessly say that they believe so and so got breast cancer because of diet, weight, attitude, etc. I was 33 and doing Jane Fonda videos when I was diagnosed and have 2 sisters who were young and healthy when they were diagnosed also. I do believe that folks may do this because they are frightened that they will get the disease and they try to distance themselves this way. But doing this is hurtful to those who are battling the illness (even if they don't eat right, etc...Lol). 
6. Cheerleading, prayers, encouragement, good wishes are all so helpful to me. Horror stories about Aunt Mildred who died the worst death ever from bc are not helpful. 
7. Also, do not forget the caregiver. Danny has been my rock and, if you want to make me smile, don't forget to do something nice for him (a meal, a coffee, a kind word). He has to be physically and emotionally exhausted at times, but he has always done his best to hide it from me.
8. And did I mention how much I love and appreciate my support? I have been blessed with receiving unbelievably kind and sensitive encouraging words that have lifted me up so much. Thank you all from the bottom of my heart.
9. And thanks for letting me get this off my chest . It is an October phenomenon for me...Lol.

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Comments

  • fauxma
    fauxma Member Posts: 3,577 Member
    I am so in agreement with all

    I am so in agreement with all that you have said.   You put it very well   I do not choose to invest in pink products that end up only giving a tiny portion of the price to cancer.  I would rather find a place to donate where my entire donation will go to research for a cure.   It is a great thing to continue the message that woman should be getting mammograms and that everyone, men or women so do self exams but that message should be all year long and not used to turn an original idea into a pink cash cow for manufacturers.  I do respect that other love the whole concept, it just doesn't do it for me.

    And I love your hooray for our caregivers.  My Den is my rock also.  Couldn't have gotten through any of it without.

    You had so many great points on every level and you put it in a way that reflects your feelings without sounding like it is the only viewpoint. Everyone here looks at these things in different ways and what give comfort to one might not comfort someone else.  We are all on a cancer journey but our paths and final destinations are as diverse as we are.  But sometimes what one person says resonants with us.  Your post resonanted with me.   

    I hope that we see lots of viewpoints on Pink October.  For some it is great and inspires, others might hate the reminder of cancer, some might hate that it is awareness and not a search for the cure.  Newbies may feel different than old timers,  Stage 1 might feel differnt than Stage IV.   Let's hear how we feel about the pinkness of October.  Love it, hate it, indifferent to it.   Everyone has an opinion and none are right or wrong.  Vent about it or praise it.   What's your take on it?

    thank you for starting this post.

    Stef

     

  • Margeaux
    Margeaux Member Posts: 84
    Pink

    So much of what you said I agree with.  Have to admit that I am still into "pink", today I wore a glittery pink ribbon pin to my oncologist visit (which went well).  This pin was given to me by a lady whose generous donations helped equip a state-of-the art breast center.  Bless you, Bobetta Lindig.  However, I am sceptical too, of the pink merchandise, unless the claim is made by a reputable company, they have too much to lose.  I experienced every one of the points you mentioned, could write a book about remarks made to me, including this gem at the beginning of my treatment "now you are a realistic person, you know that the only thing oncologists want is your money, once you got cancer......", you should have had organic food only, then.... , or to second guess the oncologist's treatment program, because, after all, she saw an hour's program on PBS.  I finally had to tell everyone firmly, unless you have been to medical school, no suggestions, please.  Don't send me any forwards about cancer treatment, or the fact milk will cause cancer! Like you I am so glad to have found this site, even though I am not posting much lately.  I found the support I do not have in my life.  Do you remember when someone on this board decided against chemotherapy in favor of using some form of cannabis oil?  She met a practicioner of this snake oil at a party.  Husband is a difficult man to live with, but during my treatment when I was often so sick, the really "manned up" .

    Hugs, Margeaux

  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    Margeaux said:

    Pink

    So much of what you said I agree with.  Have to admit that I am still into "pink", today I wore a glittery pink ribbon pin to my oncologist visit (which went well).  This pin was given to me by a lady whose generous donations helped equip a state-of-the art breast center.  Bless you, Bobetta Lindig.  However, I am sceptical too, of the pink merchandise, unless the claim is made by a reputable company, they have too much to lose.  I experienced every one of the points you mentioned, could write a book about remarks made to me, including this gem at the beginning of my treatment "now you are a realistic person, you know that the only thing oncologists want is your money, once you got cancer......", you should have had organic food only, then.... , or to second guess the oncologist's treatment program, because, after all, she saw an hour's program on PBS.  I finally had to tell everyone firmly, unless you have been to medical school, no suggestions, please.  Don't send me any forwards about cancer treatment, or the fact milk will cause cancer! Like you I am so glad to have found this site, even though I am not posting much lately.  I found the support I do not have in my life.  Do you remember when someone on this board decided against chemotherapy in favor of using some form of cannabis oil?  She met a practicioner of this snake oil at a party.  Husband is a difficult man to live with, but during my treatment when I was often so sick, the really "manned up" .

    Hugs, Margeaux

    Margeaux, I actually love

    Margeaux, I actually love pink and still wear pink ribbon jewelry and have a blanket with pink ribbons on it that I carry with me to chemo.

    I don't want to cut off my nose to spite my face (so to speak) and I have often been thrilled with the focus on breast cancer awareness in October (and the money that does pour into some legitimate charities).  

    But I do have mixed feelings because, somewhere along the line, everyone and their brother seemed to be making a profit off of pink merchandise.  I just keep thinking if everyone gave directly to a cancer center or to research...well you get my point.

    I do remember the cannabis oil.  It about made me crazy...Lol.  Recently a neighbor wants me to try tree sap and I really did have a radiology nurse tell me that kudzu tea cures breast cancer.  I rarely say anything but it does tire me out just to listen to the "cures."

  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    fauxma said:

    I am so in agreement with all

    I am so in agreement with all that you have said.   You put it very well   I do not choose to invest in pink products that end up only giving a tiny portion of the price to cancer.  I would rather find a place to donate where my entire donation will go to research for a cure.   It is a great thing to continue the message that woman should be getting mammograms and that everyone, men or women so do self exams but that message should be all year long and not used to turn an original idea into a pink cash cow for manufacturers.  I do respect that other love the whole concept, it just doesn't do it for me.

    And I love your hooray for our caregivers.  My Den is my rock also.  Couldn't have gotten through any of it without.

    You had so many great points on every level and you put it in a way that reflects your feelings without sounding like it is the only viewpoint. Everyone here looks at these things in different ways and what give comfort to one might not comfort someone else.  We are all on a cancer journey but our paths and final destinations are as diverse as we are.  But sometimes what one person says resonants with us.  Your post resonanted with me.   

    I hope that we see lots of viewpoints on Pink October.  For some it is great and inspires, others might hate the reminder of cancer, some might hate that it is awareness and not a search for the cure.  Newbies may feel different than old timers,  Stage 1 might feel differnt than Stage IV.   Let's hear how we feel about the pinkness of October.  Love it, hate it, indifferent to it.   Everyone has an opinion and none are right or wrong.  Vent about it or praise it.   What's your take on it?

    thank you for starting this post.

    Stef

     

    Thanks Stef!  I really do

    Thanks Stef!  I really do love many things about Pink October, but my feelings are so mixed--especially with the recent deaths here.  One of my physician friends was actually encouraging the sale of a cute "Save the Hooters" shirt and I love her, but I still don't like the shirts.  It just feels like they are saying it is more important to save the breasts than the lives and I know rationally this is not what they mean, but they just don't feel right for me.

  • SIROD
    SIROD Member Posts: 2,194 Member
    Pink October

    Dear CC,

    I agree 100% to what you posted.  Thank you for putting this up before Pink October.

    I have mellowed somewhat since last year, though I do understand the celebration.  There is a need for Komen Race for Cure to provide funds that go to other areas that is not science related, helping with transportations, helping with lymphedema compression sleeves (which I have benefitted indirectly).  I can understand why those who finished their first and hopefully only round with BC to be celebrating.  However, I do wish Komen did remember we stage IV people a little better, after all Susan Komen was stage IV too.

    Specially believe that one has to watch their money when something says it supports Breast Cancer.  How much are they giving, is their a cap on their donation, if you like the pink towel, buy it but don't believe your giving money to save people from bc.  Give to legitimate organizations, Metavivor is one that every penny goes to BC Stage IV research. ACS and your local cancer center.

    One of them, I believe it was save the Ta Tas that their money went towards awareness.  What planet are they from I think I email them that people were not aware of breast cancer.

    Thanks again for bringing it up. 

    Doris

  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    SIROD said:

    Pink October

    Dear CC,

    I agree 100% to what you posted.  Thank you for putting this up before Pink October.

    I have mellowed somewhat since last year, though I do understand the celebration.  There is a need for Komen Race for Cure to provide funds that go to other areas that is not science related, helping with transportations, helping with lymphedema compression sleeves (which I have benefitted indirectly).  I can understand why those who finished their first and hopefully only round with BC to be celebrating.  However, I do wish Komen did remember we stage IV people a little better, after all Susan Komen was stage IV too.

    Specially believe that one has to watch their money when something says it supports Breast Cancer.  How much are they giving, is their a cap on their donation, if you like the pink towel, buy it but don't believe your giving money to save people from bc.  Give to legitimate organizations, Metavivor is one that every penny goes to BC Stage IV research. ACS and your local cancer center.

    One of them, I believe it was save the Ta Tas that their money went towards awareness.  What planet are they from I think I email them that people were not aware of breast cancer.

    Thanks again for bringing it up. 

    Doris

    Thanks Doris!  I am

    Thanks Doris!  I am encouraged that Komen is now giving more money to Stage 4.  I think many of the charities are now beginning to listen to the criticism.  Just hope it lasts!  

    BTW, OT, I thought of you recently when I read the recent Audubon Magazine about Steve Kress and his contribution to reintroducing puffins to Maine.  See: http://mag.audubon.org/articles/birds/puffin-man

    I didn't even know there were puffins in the US--shame on me!  Have you seen a puffin?  Is Easter Egg Rock near you?

    I am glad you have had a positive experience with the drivers.  Sounds like a good way to give back--maybe when we are feeling better?!  Big hugs!

  • fauxma
    fauxma Member Posts: 3,577 Member

    Thanks Doris!  I am

    Thanks Doris!  I am encouraged that Komen is now giving more money to Stage 4.  I think many of the charities are now beginning to listen to the criticism.  Just hope it lasts!  

    BTW, OT, I thought of you recently when I read the recent Audubon Magazine about Steve Kress and his contribution to reintroducing puffins to Maine.  See: http://mag.audubon.org/articles/birds/puffin-man

    I didn't even know there were puffins in the US--shame on me!  Have you seen a puffin?  Is Easter Egg Rock near you?

    I am glad you have had a positive experience with the drivers.  Sounds like a good way to give back--maybe when we are feeling better?!  Big hugs!

    October is bittersweet for me

    October is bittersweet for me as it was October 23rd when I had my biospies and found out I had breast cancer so sometimes all that pink is just a sad reminder.  But I like the concept of it, just not the overkill of stuff that claims it supports breast cancer.   Any money I donate goes to ACS or Relay for LIfe and now that Doris mentioned Metavivors I will look into that as well.  I don't have as much to donate now but I always do something each year.

    Stef

  • SIROD
    SIROD Member Posts: 2,194 Member

    Thanks Doris!  I am

    Thanks Doris!  I am encouraged that Komen is now giving more money to Stage 4.  I think many of the charities are now beginning to listen to the criticism.  Just hope it lasts!  

    BTW, OT, I thought of you recently when I read the recent Audubon Magazine about Steve Kress and his contribution to reintroducing puffins to Maine.  See: http://mag.audubon.org/articles/birds/puffin-man

    I didn't even know there were puffins in the US--shame on me!  Have you seen a puffin?  Is Easter Egg Rock near you?

    I am glad you have had a positive experience with the drivers.  Sounds like a good way to give back--maybe when we are feeling better?!  Big hugs!

    Puffins

    CC,

    Thank you for the article on the puffins.  I am not familiar with the name of the Island but I do have somewhere on one of my bookshelves, that story about the puffins written by Frank Graham Jr. and his wife Ada.  I know the Grahams as my former husband and now my son run a bird sanctuary.  I never seen a puffin as they are sea birds.  After living all these years in Maine, I've only taken one trip across the bay, I have been on whale watches and similar excursions.  Frank must be up in years.

    Best to you,

    Doris

     

  • 1surfermom
    1surfermom Member Posts: 396 Member
    Thank you CC

    Thank you CC  for your eloquent post. I couldn't agree more. I especially like your mention of the care giver, I often think that cancer is a family disease and it affects those around us just as profoundly.  A friend of my teen aged son  once wore the "I love boobies" bracelet, it really annoyed me. I told him that it was nice that he was supporting the cause but that I wasn't that crazy about my own breasts since it seems that my breasts were trying to kill me. He was pretty quiet after that. Love Surf 

  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member

    Thank you CC

    Thank you CC  for your eloquent post. I couldn't agree more. I especially like your mention of the care giver, I often think that cancer is a family disease and it affects those around us just as profoundly.  A friend of my teen aged son  once wore the "I love boobies" bracelet, it really annoyed me. I told him that it was nice that he was supporting the cause but that I wasn't that crazy about my own breasts since it seems that my breasts were trying to kill me. He was pretty quiet after that. Love Surf 

    I absolutely love your reply

    I absolutely love your reply to the teen!  I may have to quote you Smile!  

     

  • Cricket64
    Cricket64 Member Posts: 63

    I absolutely love your reply

    I absolutely love your reply to the teen!  I may have to quote you Smile!  

     

    Adding my own, 'well done'

    Adding my own, 'well done' comment.  And the same to everyone else who replied before me.  We all have to be very careful what source we gather our 'battle plan from', and who we will allow to 'to enter our safe zone'.  I am now a two year survivor, but cancer, still lurks in the shadows.  One of the best bits of advice I received right after my diagnosis, came from our former pastor and dear friend.  He know that our new pastor, and I just did not see eye to eye, and attending his services, only upset me more.  ( an interesting situation, considering that my husband is the music director ).  The advice, although simple, was so profound at me:  He said, pick your battles, and to put myself on the top of the what works list.  Perhaps not the answer his superiors would have approved up, but as the following Sundays rolled around, I choose to take calming walks with my dog, and felt better.

     

  • lizzie17
    lizzie17 Member Posts: 548
    WELL SAID !!

    I  completely agree with you about everything.  I really dislike pink now, and I also resent the Save the Ta-Ta's----mine  are gone and

    every day I continue to pray and fight.  And some  people ask, How are you? I respond "oh fine, thanks"  and then it  is "NO, I Mean

    how are you REALLY"?  I don't like to talk about it.  Ever....except to a few special long-time friends.  I feel like the others are just

    curious.  Not compassionate.

    My "caregiver" has changed my almost entire diet to organic.  I just hate the concentrated effort on what I eat (I am still overweight).

    He has never weighed over 150. 

    Friday I had a STAT breast ultrasound with 3 enlarged lymph nodes under my right arm.  They appear benign.............just wondering

    why they are not doing a biopsy...

    WOW, thank you all for listening. This post is all over the place!!!! 

    Hugs,

    Carol

     

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    Cricket64 said:

    Adding my own, 'well done'

    Adding my own, 'well done' comment.  And the same to everyone else who replied before me.  We all have to be very careful what source we gather our 'battle plan from', and who we will allow to 'to enter our safe zone'.  I am now a two year survivor, but cancer, still lurks in the shadows.  One of the best bits of advice I received right after my diagnosis, came from our former pastor and dear friend.  He know that our new pastor, and I just did not see eye to eye, and attending his services, only upset me more.  ( an interesting situation, considering that my husband is the music director ).  The advice, although simple, was so profound at me:  He said, pick your battles, and to put myself on the top of the what works list.  Perhaps not the answer his superiors would have approved up, but as the following Sundays rolled around, I choose to take calming walks with my dog, and felt better.

     

    Some random thoughts and feedback from others

    Pink October did a wonderful job In raising awareness and raising funds.  Komen did a wonderful job.    I am for anything legitimate that helps women/men with breast cancer in any way(research, financial, access to care, etc).   Unfortunately, I think the general public has really had it with all the pink.  And that's really a shame.  This week I encountered two situations that bring that home .

    1.  A friend informed me Friday that September is also Alzheimers Awareness month (she thought Sept was Breast Cancer Awareness month).  She went on to proclaim that breast cancer is all but cured so all the $$ given for breast cancer research should go to Alzheimers research instead.  Really?  I hope I helped her understand that bc is not all but cured and  she should look into what is being done for Alzheiners research or not and get involved if she feels that strongly.  No one could argue that it is not a worthy cause, but so is breast cancer.  I guess she's sick of the pink. 

    2.  Today I helped at an Ovarian Cancer run/walk.  Setpember is Gynecologic/Ovarian Cancer Awareness month.   I was happy to help our sisters in teal.  Conversations amongst various participants included comments about all the publicity and fundraising dedicated to breast cancer and yet most women don't know about the warning signs of gyn cancers, hence they they're often not diagnosed until they are in an advanced stage.  It was a nice turnout, but nothing like all the breast cancer walks/runs. 

       I don't know what the answer is, but I do want fundraising to continue and I want the public to know that this is still necessary and why.   I find all of the profits being made from breast cancer merchandise troubling, but the mere fact that people are annoyed by all of this shows that we are aware.

    Suzanne

  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member
    Cricket64 said:

    Adding my own, 'well done'

    Adding my own, 'well done' comment.  And the same to everyone else who replied before me.  We all have to be very careful what source we gather our 'battle plan from', and who we will allow to 'to enter our safe zone'.  I am now a two year survivor, but cancer, still lurks in the shadows.  One of the best bits of advice I received right after my diagnosis, came from our former pastor and dear friend.  He know that our new pastor, and I just did not see eye to eye, and attending his services, only upset me more.  ( an interesting situation, considering that my husband is the music director ).  The advice, although simple, was so profound at me:  He said, pick your battles, and to put myself on the top of the what works list.  Perhaps not the answer his superiors would have approved up, but as the following Sundays rolled around, I choose to take calming walks with my dog, and felt better.

     

    I love what your former

    I love what your former pastor said!  We have to do what works for us now.  And I love my walks which are sometimes very short now, but I try whenever I can.  Hard to say who moves slower--my geriatric dogs or me...Lol.

     

  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member

    Some random thoughts and feedback from others

    Pink October did a wonderful job In raising awareness and raising funds.  Komen did a wonderful job.    I am for anything legitimate that helps women/men with breast cancer in any way(research, financial, access to care, etc).   Unfortunately, I think the general public has really had it with all the pink.  And that's really a shame.  This week I encountered two situations that bring that home .

    1.  A friend informed me Friday that September is also Alzheimers Awareness month (she thought Sept was Breast Cancer Awareness month).  She went on to proclaim that breast cancer is all but cured so all the $$ given for breast cancer research should go to Alzheimers research instead.  Really?  I hope I helped her understand that bc is not all but cured and  she should look into what is being done for Alzheiners research or not and get involved if she feels that strongly.  No one could argue that it is not a worthy cause, but so is breast cancer.  I guess she's sick of the pink. 

    2.  Today I helped at an Ovarian Cancer run/walk.  Setpember is Gynecologic/Ovarian Cancer Awareness month.   I was happy to help our sisters in teal.  Conversations amongst various participants included comments about all the publicity and fundraising dedicated to breast cancer and yet most women don't know about the warning signs of gyn cancers, hence they they're often not diagnosed until they are in an advanced stage.  It was a nice turnout, but nothing like all the breast cancer walks/runs. 

       I don't know what the answer is, but I do want fundraising to continue and I want the public to know that this is still necessary and why.   I find all of the profits being made from breast cancer merchandise troubling, but the mere fact that people are annoyed by all of this shows that we are aware.

    Suzanne

    I don't want to be

    I don't want to be misunderstood, because I love so much about Pink October.  I love the infusion of money into breast cancer and I love the legitimate coverage and focus on our cause.  At the same time, I can't help having mixed feelings. 

  • sandra4611
    sandra4611 Member Posts: 121
    Never thought of it that way

    As someone new to the fight, I do so appreciate the wisdom of those who are ahead of me. I was uncomfortable with the whole awaremess/merchandise thing but couldn't put my finger on why. Guess it's because I was only diagnosed 2 months ago and haven't had time yet to explore those feelings. Too busy with BMX, complications, 2nd surgery, drains, PICC lines and IV vancomycin for nearly a month. Thanks for helping me understand those little voices in my head. Sometimes I feel those voices are speaking a language I've never heard, don't understand and don't WANT to understand. But the feelings that come with the words linger and nag at me.

    I don't understand the goal of saving breasts. Shouldn't the focus be on saving lives? When I was diagnosed I was astounded that the medical personnel just assumed I would want to "save" my breasts by having a lumpectomy instead of mastectomy, and then later assumed I would want nipple sparing surgery. (I didn't.) I'm not a valuable person unless I have nipples? The decision to also have "a perfectly healthy breast removed" seemed to horrify some of the medical personnel who kept saying the chances of developing it there were so low, it didn't make sense. In the end they respected my decisions. Good thing because the pathology report should the "good breast" also had cancer - in fact was slightly more advanced - but hadn't shown up on any of the mammograms or MRI.  

    I ended up having immediate reconstruction with implants...not because I felt I needed breasts or even wanted them, but because the surgeon just assumed I would and had already made plans with the plastic surgeon to do it.  I didn't have much time to think about it (3 days from diagnosis to meeting the surgeon) and really couldn't think of a reason why not. One side turned out fine, the other didn't and required a second surgery. Two more will be needed. Sometimes I wish I'd waited to have the reconstruction until I fully understood what I was getting myself into.

    October should be "Aware That There Is More To Breast Cancer Than Boobs" Month. 

  • Lavender babe
    Lavender babe Member Posts: 5
    Sad exploitation of Breast Cancer

    Definitely agree with all you have said.  I find it beyond reprehensible that people have created this farce to benefit from the suffering of women everywhere.

    Pink is a great color until you associate it with breast cancer.

    Sad that people are such sheep to follow such ridiculous hyperbole.

    A cancer diagnosis leaves most people subject to a wide arena of con artists, trying to sell you a miracle cure, this is almost worse because it is trying to sell you hope in a lie.  May God have mercy on their souls.

  • CypressCynthia
    CypressCynthia Member Posts: 4,014 Member

    Never thought of it that way

    As someone new to the fight, I do so appreciate the wisdom of those who are ahead of me. I was uncomfortable with the whole awaremess/merchandise thing but couldn't put my finger on why. Guess it's because I was only diagnosed 2 months ago and haven't had time yet to explore those feelings. Too busy with BMX, complications, 2nd surgery, drains, PICC lines and IV vancomycin for nearly a month. Thanks for helping me understand those little voices in my head. Sometimes I feel those voices are speaking a language I've never heard, don't understand and don't WANT to understand. But the feelings that come with the words linger and nag at me.

    I don't understand the goal of saving breasts. Shouldn't the focus be on saving lives? When I was diagnosed I was astounded that the medical personnel just assumed I would want to "save" my breasts by having a lumpectomy instead of mastectomy, and then later assumed I would want nipple sparing surgery. (I didn't.) I'm not a valuable person unless I have nipples? The decision to also have "a perfectly healthy breast removed" seemed to horrify some of the medical personnel who kept saying the chances of developing it there were so low, it didn't make sense. In the end they respected my decisions. Good thing because the pathology report should the "good breast" also had cancer - in fact was slightly more advanced - but hadn't shown up on any of the mammograms or MRI.  

    I ended up having immediate reconstruction with implants...not because I felt I needed breasts or even wanted them, but because the surgeon just assumed I would and had already made plans with the plastic surgeon to do it.  I didn't have much time to think about it (3 days from diagnosis to meeting the surgeon) and really couldn't think of a reason why not. One side turned out fine, the other didn't and required a second surgery. Two more will be needed. Sometimes I wish I'd waited to have the reconstruction until I fully understood what I was getting myself into.

    October should be "Aware That There Is More To Breast Cancer Than Boobs" Month. 

    Sandra, I am so very sorry to

    Sandra, I am so very sorry to hear of all that you have been through!  Just wanted to say that I am glad that you found the MB and I know your insights will help others.  Gentle hugs and prayers and please keep us posted on how you are doing!

  • SIROD
    SIROD Member Posts: 2,194 Member

    Thanks Doris!  I am

    Thanks Doris!  I am encouraged that Komen is now giving more money to Stage 4.  I think many of the charities are now beginning to listen to the criticism.  Just hope it lasts!  

    BTW, OT, I thought of you recently when I read the recent Audubon Magazine about Steve Kress and his contribution to reintroducing puffins to Maine.  See: http://mag.audubon.org/articles/birds/puffin-man

    I didn't even know there were puffins in the US--shame on me!  Have you seen a puffin?  Is Easter Egg Rock near you?

    I am glad you have had a positive experience with the drivers.  Sounds like a good way to give back--maybe when we are feeling better?!  Big hugs!

    Finally!

    I found this on another web page but finally SK is finally acknowledging MBC.  To bad they waited so long and I hope more money will be giving to research stage IV.

    ------------------------------------------------------------------------------------------------------------------------------------------------------------

    Los Angeles is having it's first ever Metastatic Breast Cancer (MBC) event on Saturday, October 5, 2013 from 10am - 2pm. There will be educational lectures and networking opportunities for those living with metastatic / advanced / stage 4 breast cancer (MBC) to meet each other and share experiences.

    All who are living with metastatic breast cancer in Southern California are cordially invited to attend this FREE groundbreaking event! Bring your loved ones and caregivers too.

    Please share this event information with anyone who may benefit from attending, including clinics and cancer centers.

    The Los Angeles Affiliate of Susan G. Komen for the Cure invites you to attend their first conference on:

    Living with Metastatic Breast Cancer 
    10 am - 2 pm on Saturday, October 5th, 2013 The Olympic Collection Conference Center 

    11301 Olympic Blvd #204 / Los Angeles, CA 90064

    This FREE event is sponsored by Susan G. Komen, LA County Affiliate and Anthem Blue Cross of California.

    · Learn how others with metastatic breast cancer cope with advanced breast cancer 
    · Learn about available resources and the latest advances in treatment 
    · Network and connect with others living with metastatic breast cancer 
    · Learn about integrated medicine, treatment, and the impact of the Affordable Care Act from experts in the field, including: Dr. Sara Hurvitz /UCLA, Dr.Debu Tripathy / USC, Dr. Patricia Ganz/UCLA and more! 
    · Lunch, snacks and drinks will be served free of charge

    To RSVP and for more information, please contact Gauri Joshi at

    GJoshi@komenlacounty.org 

    or 

    (310) 575-3011 Ext. 14 
    or 
    via Facebook at: 
    https://www.facebook.com/events/140876706121604/

    Sincerely,

    Dikla Benzeevi 
    11-year advanced breast cancer thriver

     

  • SIROD
    SIROD Member Posts: 2,194 Member

    Some random thoughts and feedback from others

    Pink October did a wonderful job In raising awareness and raising funds.  Komen did a wonderful job.    I am for anything legitimate that helps women/men with breast cancer in any way(research, financial, access to care, etc).   Unfortunately, I think the general public has really had it with all the pink.  And that's really a shame.  This week I encountered two situations that bring that home .

    1.  A friend informed me Friday that September is also Alzheimers Awareness month (she thought Sept was Breast Cancer Awareness month).  She went on to proclaim that breast cancer is all but cured so all the $$ given for breast cancer research should go to Alzheimers research instead.  Really?  I hope I helped her understand that bc is not all but cured and  she should look into what is being done for Alzheiners research or not and get involved if she feels that strongly.  No one could argue that it is not a worthy cause, but so is breast cancer.  I guess she's sick of the pink. 

    2.  Today I helped at an Ovarian Cancer run/walk.  Setpember is Gynecologic/Ovarian Cancer Awareness month.   I was happy to help our sisters in teal.  Conversations amongst various participants included comments about all the publicity and fundraising dedicated to breast cancer and yet most women don't know about the warning signs of gyn cancers, hence they they're often not diagnosed until they are in an advanced stage.  It was a nice turnout, but nothing like all the breast cancer walks/runs. 

       I don't know what the answer is, but I do want fundraising to continue and I want the public to know that this is still necessary and why.   I find all of the profits being made from breast cancer merchandise troubling, but the mere fact that people are annoyed by all of this shows that we are aware.

    Suzanne

    For Suzanne

    The causes you mention are all worthy one.  They all need hope and cure.

    I was very tired of pink because I associated with ignoring the fact that the disease was far from being cure, none was even in the works.  I associated all that pink stuff profiting from the disease and giving so little if anything back for research.  Though Susan Komen Foundation did wonderful things, only a % was being given the research and the fact that they didn't want to acknowledge stage IV, ignoring us really bummed me out.  I hope more will go into research now and less into administration.  There was something very wrong about that fact.

    I do believe they might be coming around.  Nancy Brinker did a lot for breast cancer but "for the cure" was being missed by miles.

    A donation to some of the worthy causes of breast cancer especially if the research is to find a cure is worth more than buying a pink tea towel, pink hat or trowel.   Less Pink and More Green should be the new motto.

    Doris