Illinois ladies facing bc
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Thanks. Plans actually postponed. We going to do it soon though
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Hi all!-
Tim- (((hugs)))
Lago and Corinne- Happy Bday!
I am starting to hate the commercials too. On the one hand, I'm grateful that because of the high visibility of these things, it's easier for people to talk about breast cancer. On the other hand..... I don't know. It almost seems to make it acceptable in a weird way. It kind of diminishes the severity of this whole thing. Almost like BC is no big deal. I'm still surprised how many people (especially men!) don't realize it's uncomfortable to be asked if I had a lumpectomy or mastectomy. My boobs should be my business
I have a question-
I have my exchange surgery in 3 weeks and 6 days (yes, I'm counting down to get rid of these rock hard foobs!) At this stage.... I just can't imagine going through another procedure to get nipples. I'm so tired of taking off my shirt in front of people I don't know! So I'm seriously considering the 3D tattoos. The medical assistant at my PS office does it, but I'm wondering about other options. I'm in the FAR western suburbs, but don't mind traveling a bit. Any suggestions?????
Thanks!
Corpor
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Corpor The biggest problem with all the walks/runs etc. is they are promoted like a big celebration and about awareness. Even many of the participants don't seem to realize this is a FUNDRAISING event. It's about raising money for research, prevention, education, services etc. But when you are going through treatment this bugs you, even the treatment centers of American and all the other places that promote cancer treatment. You're just so sick of hearing about cancer all the time because that is what your life had turned into. Trust me it gets better.
You have plenty of time to decide on nipples or no nipples. Do your research. I did nipples followed by tattoos. My exchange was in June, revision with nipples in October. Tattoos on my birthday. But I could have waited. I'm glad I did the nipples. It's not a huge surgery in most cases. In my case I did it with a revision and additional fat transfer so it was a bit more.
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All of the above, so true! I remember, before I got BC, my daughter asked "How can walking save someone's life?"
It did look like a party to her. Then, believe it or not, when I got BC, my son, who is a dr (psychiatrist) said, "Who do you know who has ever died of BC?" I rattled off a few names. I could NOT believe he could say such a thing and while I suppose he thought he was reassuring me it felt as though he was trivializing it. Maggie Daley died soon after and there was so much coverage on TV. I was hoping he was watching, a little reality check!
I'm an open person and just can't keep secrets but those pitying looks, ugh! I have to remind myself that they are well-intentioned. The only people who hit the right note are the one's who have been through it in one way or the other. Nothing teaches like experience. But caring is caring and I try not to let the others bother me too much. They do mean well. But sometimes I wish I'd kept it a secret.
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Timbu I've had to nicely educate a lot of folks.
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Lago and Corinne.....Happy Birthday
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Happy birthday, Lago and Corinne!
I support walks that I know provide medical treatments/support for women and men who are without the means I was fortunate to have. They list the beneficiaries of the money raised.
Tim, these are hard times for you. You are in my thoughts.
Susan
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The starting point of all achievement is desire. Keep this constantly in mind.
Weak desire brings weak results, Just as a small amount of fire makes a small
amount of heat.
Napoleon Hill0 -
Doing some extra work the past couple of days as well as tomorrow....so not keeping up too well at the moment but I'll soon have it back under control.
Blessings,
Jackie
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We share
with all life the capacity for feeling, the experience of having a body, mind,
and heart in continual interface with countless other bodies, minds, and
hearts. Our capacity to feel deeply means we share with all life the
possibility of experiencing delight, joy, trust, and intimacy, just as we share
in the capacity to experience pain, sorrow, grief, and fear. Living within a
physical body, we all share the experience of aging, frailty, illness, and
death, just as we share the precious times of strength, health, safety, and
vitality. Through our minds we share the capacity to experience confusion,
agitation, and complexity, just as we share the possibilities of serenity,
clarity, and balance. An understanding of this profound interconnectedness of
all life is at the root of the compassionate heart dedicated to alleviating
suffering without reservation or exception.
Christina Feldman0 -
I have so many gripes I can't count them. I feel that Komen and Avon, being corporations, are very covert about the money they raise and how much goes to the cause and how much goes to administration of these high profile events. It is more a positive publicity stunt for the company and yeah, rah for the participants. Im sorry but I am no where near to being physically able to walk in one of\ these things, and I don't want anything to do with the blasted Pink Ribbon business. And I told my daughters not to buy me any of that Pink Ribbon garbage, because I read that there is really no way of knowing if the money spent is actually going toward the cause.
As for early detection, all I can say is "Is that all you've got?" Early detection means you already HAVE the blasted disease, and even early detection is of little use with a diagnosis like mine. I had a 1.2 cm. tumor, stage 1 from the US and MRI, and it was already in a node. How much earlier are we going to detect? When some mammograms, according to my wonderful highly thought-of radiologist, looks like a "polar bear in a snow storm". Difficult to see, difficult to diagnose, etc. And then my #1 top surgeon during my workup for surgery told me that numerous calcifications in a large gray area on my mammo could mean I was already Stage IV. I know he was trying to prepare me, but I went home in shock, the ultimate deer-in-the-headlights frozen to the core shock.
My present MO is in a national research study to study the DNA of tumors themselves and to see if the DNA might also be found in the patient's blood. They are working toward a possible blood test that may someday be used as the ultimate screening tool for BC, without all the hoopla and uncertainty and limitations of our present arsenal of diagnostics.
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Wow Barb.....I can see why you feel like you do. Somehow, it seems a mite cruel to me to tell someone they might already be Stage IV when you are the surgeon. Now, I truly respected my surgeon, but even she I think would not have hinted at a diagnosis based on a mammogram picture. It maybe was nice that he wanted to prepare you, but it just seems odd to me to do it that way. I mean......just finding out that you have cancer ( any stage ) is enough to give you the "its over for me now" sort of crushed and defeated feeling. I sure had it and was for a good length of time pretty scared and upset.
I'd like to think that Dr.'s , surgeons, and most medical personnel would use some common sense about this most touchy subject. I know there are many that don't have a bed-side manner worth a hoot, but I really think no one should be saying things like what was said to you ( no matter how CLOSE they think they are ) until operations are complete and the most that can be KNOWN at that time, is in fact known and proven out by pathology results.
I do wish the corporations that deal with cancer funds raised would have to be more forth-coming about how the money is allocated. So often though, with so many individuals, some won't be happy no matter what.
I hope your MO has a huge success with the program he is a part of as there is so little out there that is specific but I'm grateful for what is there because we really aren't in the dark ages as we once were. There was a time when about all you could do was go home and hope for the best. We have eradicated a lot of things but sadly cancer so far is not one of them.
Blessings
Jackie
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(((BARB))), I understand your frustration. Wasn't Komen giving money to Planned Parenthood? I thought that was a tremendous betrayal of all of the hard work and hope that people had contributed for "THE CURE". Seemed to me every penny should have gone to research.
This disease, and cancer in general is just such a crap shoot. So unpredictable. When my onco happily showed me that my onco score was 14, I was not so happy. I told him "i want certainty"! He shook his head sadly, "no certainty". Now I'm faced with endometrial cancer and I can't wrap my mind around it. I guess we just have to try to live the moment as well as we can and hope that they add up. OTH, we ARE still here... With all of the difficulties I sometimes remind myself that a hundred years ago, there really was nothing to be done.
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barb1319 my surgeon really thought I would be a stage IIIA. Granted he said there was a chance that nothing would be in my nodes but given the size of my tumor (IDC+DCIS total was 6.5cm) and the fact that it was HER2+ and so fast growing the likelihood was high. For some reason my gut said I wouldn't have it in my nodes. But stage smage I still got the same treatment.You BS should have never said anything like what he said to you. Like you needed that stress.
Most of these charities have how the money is used on their site. Thing is you do need people to run the organization, and good people at that. Non profit in does pay much much less than for profit although I think the higher ups make way too much. Maybe it's the only way the can get good people. I know the hours they put in at ACS was ridiculous for what they paid these people. That said research money has to come from somewhere. If not these organizations then where, the drug companies with their own self interest. Right now this is all we got. Granted I'm still not on board with ACS this year. After what went on last year they need to clean up their act. Lots of survivors and volunteers are not happy with them. Just spoke with a gal today from Texas who does Relay. It's going to be a rough 1-2 years for ACS.
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Happy belated birthday Lago & Corrine!
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Happy Belated Birthday Lago and Corrine! I just got back from FL from my BCO April/May 2012 chemo starters group meet up. There were 21 of us ladies there from the group. We had a fantastic time. We all beamed with happiness the entire weekend!
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thanks guys
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Lago you are right- you do have to pay for competent people. I'm in grad school- my degree can be used either for public administration or non profit management. The pay differential can be quite steep between the two, and bluntly neither pay what a private company would, while you also have the added "perk" of having your every move criticized, often publically, because of the openness required by those types of organizations. You have to really WANT to contribute to society in some way to consider either field. Because the pay given the number of hours doesn't cut it!
And I think you summed up for me the problem with the walks, etc. - it is a party. While I am the first to admit that my treatment for BC was much less debilitating compared to many others because there was no chemo or radiation, it was (and continues to be) no party.
Corpor
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corpor everyone's journey is different. You might not have had chemo or rads (I got a pass on rads too) but that doesn't mean you didn't experience the worst part... getting diagnosed! Mastectomy is no fun either! And how about them TE's. I don't know about you but I felt the entire reconstruction process was really a mad scientist experiment. We don't just call them Frankenboobs because of the stitch line. We all hope our PS doesn't find Abbey Normal's implants
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The future is not a result of choices among alternative paths offered by the
present, but a place that is created--created first in the mind and will,
created next in activity. The future is not some place we are going to, but one
we are creating. unattributed0 -
CancerWellnessCenters offer some good programs for people who have cancer (not just breast cancer). I cannot say with certainty this specific program is good, but encourage people who live near to give the center a try. This center is located in Northbrook, but I know there are others. If you live nearby and have recently been given troubling news, look into:
"Remaining Calm in the Heart of the Storm"
February 25, 7:00-9:00 pm (Presenter: Carl Jerome, Founder of the North Shore Dharma Center
"In this one-hour class, partici[pants will learn a handful of minfulness and meditation techniques that can be used anytime they are needed." see www.cancerwellness.org
One reason why I like the Center (I do not visit so much now as I am many years out -knock on wood) is that men and women with ALL cancers gather there and I find that enlightening and refreshing (in a weird way). Breast cancer is awful, but so is most every sort of cancer and we are not the only ones who walk hand in hand with fear and uncertainty. It truly does open the mind to walk and talk with others who do not relate to pink ribbons, but have their own colors! IAs I say, I cannot claim that THIS program is good, but the place overall offers a great deal of support regardless of what kind of cance one has. They do, however, have support groups for people with specific cancers, including breast cancer.
Have a good day!
Susan
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kjliberty...So glad you got the opportunity to meet some of the bc sisters who helped you and each other get through the journey...and sunny Florida was the perfect winter spot!
Susan, I remember you talking about the Cancer Wellness Center. Thanks for sharing that info for the new gals. I really wished I would have lived closer as it sounds like they have some really good programs.
Happy belated birthday to Lago and Corrine. So sorry that I'm late. I hope your birthday was great!
It looks like you gals might be getting a snow reprieve and some better temps in a few days. Whew! It's about time!
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I am lurking and keeping up with you ladies. Just wanted to add that I met Ritajean's cousin last weekend at a brunch with the PHX area BCO group. Small world!
Keeping you all in my thoughts and prayers as you endure this harsh winter. I was lucky enough to go through my chemo and rads during the summer/fall so I didn't have the additional challenge of dealing with weather, bad roads, etc. Take care and be safe.
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KJ such a wonderful time u had so happy for u.
And Barb I remember reading the amounts of money some of these organizations make to pay their CEO's I'm sorry unless that person can cure cancer they are not worth that money, it' way to much and then they all have assistants and they do not put in the hrs for that much money. So that just turns me off there. And personally I don't care for the pink stuff, but like Susan said there are so many types of cancer and it's awful that who can possible stop this disease--it's all over the body. And when I would get serious about things with my Drs, (yea once in a while I did) I told them I want to know everything even what they think might happen and I'll deal with it... And my BS said after biopsy it could be Stage IV for a lot of factors. and it did not bother me, cuz I told them don't think and not tell me. I'm not saying that's right or wrong but for me it was fine. And I never took anyone with me for anything so it was always just me and the Dr. Of course in a short time I ignored everything else I figured they knew more than me and let them deal with it. That's why I didn't want anyone with me--cuz they would listen and get upset--I just lived in my own world and still do. It's nice here LOL My point is we again are all different with our thinking and what we want to know and how we handle things and I think a dr. should respect that.
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When we are no longer able to change a situation, we are
challenged to change ourselves. ~ Victor Frankl0 -
Happy belated birthdays, Lago and Corrinne. Hope you have a great time celebrating. Think I saw it was postponed, but not sure. So behind in posts, can't possibly catch up!0 -
Always good to see a post from you, Joan. I thought that maybe you would run into Sue at one of the BC lunches or gatherings. Glad that you connected!
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Whooo hoo! Thank you my support group!
The nurse just called from sloan. TOTALLY contained in uterus! Only 5mm when the wall of the uterus is 14 mm!
Nodes clear. NO CHEMO! But it is fast growing so they want to do radiation. Fine with me!
And it's not the scary kind of cancer (if any cancer isn't scary), it's the common kind!
OMG! WHAT a relief!
Thanks to all of you for helping me to get through! I love you ALL!
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Tim that's good to hear I'm glad they got this fast and will take care of this.
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Wonderful news, Tim !!!!!!
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