DIEP 2013

Anonymous

My OT (a survivor) calls that feeling lots of us have, when we are done with the "war" but left with the physical and mental wounds but not sure who "cares", being "medically abandoned". She is a proponent of aftercare for cancer patients...to help people move into "survivorship". Our cancer center has a program that does exactly that....I took the class last summer and it emphasized the physical, mental and health aspects of being in recovery. It was very healing and helpful to me.



Bluebird ...you and your doctors and nurses are in my prayers tonight. You sound really well in your posts...you got this ...we are all with you.



Thinking of our other "ladies in healing", too!



Cherrie....special prayers for you as you do the "worry and wait". Hugs.



Christina I am so happy that your return to work feels so good for you!



I have walked three miles every day for the last three days...and done strength training and stretching. I think I have finally turned the 12 week corner...even if it's taken me 14 weeks!



Sbel I am too tired to think deep thoughts about bc tonight but will share I am sure ...you certainly have good notes from the other flappers! Not sure I can add....but you know I usually have something to say!



Gnite!

nihahi

medically abandoned.....PERFECT DESCRIPTION!!!!! 

liefie

Jeannie, whenever people would tell me that I was so strong and so courageous, I would ask them what the alternative was. What are you going to do? Wallow in self-pity? Adopt a victim mentality? Fall to pieces? Lie down and die? No way Doris Day, not this girl! The only way for me to stay sane, and move through this with grace and dignity, was to make a conscious decision early on to take charge and control of this situation, all the while telling myself that this was a temporary stumbling block, and that it would pass eventually. I knew that my attitude would be crucial in beating the beast, but it would also determine the atmosphere in my home and family. I certainly did not want a gloom and doom scenario, and hopefully set a good example to my kids which will help them handle crises they may experience in their own lives in future.

Jeannie57

True, Liefie. I did appreciate my BS and MO allowing me to make surgical/treatment decisions after laying out my options. I did my research and made my decisions which gave me a sense of control. I chose to do everything I could to be well and obliterate bc. I don't feel I wallowed but sometimes it was hard to tell when I was so tired from said treatments! Now I'm tired again but in a much better place!

sbelizabeth

Yes, it has been quite an inspiring day, surrounded by the wisdom of women who have been to the fire and back, ashes in their hair and scortched hands, but still strong, brave, and beautiful!  Whew!

Nihahi, this is an annual breast cancer symposium arranged by a large hospital here.  It's held at the Ronald Reagan Library and is widely advertised.  The audience consists of medical professionals and community members, men and women who are cancer survivors, currently in treatment, or never had it touch their lives.  It's very mixed.  Last year's "celebrity speaker" was Joni Eareckson Tada, a well-known speaker who is a quadriplegic and had BC a year before I was diagnosed.  Now THERE was a story!

But we all have a story, don't we?  When I was diagnosed two years ago, I was pretty sure I'd never live to see any grandchildren, and here I am, rocking Aubrey in her great-great grandmother's rocking chair.  Like Nihahi so eloquently wrote, every moment is precious--whether I live another five minutes or fifty years.  

Jeannie57

I have read a couple of Joni E-T's books. She is amazing! But you are, too, Katy, and I know you will have a great impact on the audience with your words, with your beautiful self. Of course we will all be crowding the podium with you, holding onto each other. That's what we do---support, encourage, share stories, laugh, cheer on, sometimes cry. Thanks for having the courage to represent!

Moviemaniac

Dear ladies.......just want to say "Amen" to all that's been said here.....Nihahi, your post was particularly poignant.....I went alone to my DX meeting with BS.....part of me was in denial, I guess. I drove home, numb and in shock. It was my husband's birthday, and we were meeting at the house to go for lunch. I walked in with a smile on my face, because I didn't want to spoil his birthday......his first question was about my appointment. I looked at him, and said "I have cancer". He wrapped me in his arms, and we cried together.....my life changed forever that day.



I have also been blessed during this journey to "meet" some amazing and courageous women........many right here on this board........I count that as a positive....



A goodnight to all.....XO

Cherrie

All of your words have really lifted me and brought back so many memories. My BS called me on the phone while I was having lunch with my colleagues. I buckled at the knees and they picked me up and I finished teaching that day. These were not the people I would have told first. The medical community needs to think about news like this should be given.



What a support this site is. It is the gift that keeps on giving. Thank you so much as I need all of you at times.



Katy- I wish I could be there and listen as you give your talk. Hopefully you get some strength through us. When are you giving this? You are so brave. I don't have this kind of courage. (Public speaking)

Janet_M

Good morning lovely ladies.  My first thought this morning was to send a request to the Universe that they treat Bluebird kindly today. Actually, what I really thought was 'Universe, get your act together' but I didn't think that would grant me any favours. 

Then I took my dog for a walk and saw the reflection of myself in the window of the corner store, and was momentarily thrilled by the reflection of my flat stomach. Then I saw that the arm not holding the leash had a compression sleeve, and I saw the short hair, and the fact that I'm walking, rather than working during the day. I couldn't help but laugh - this is a wild f*cking ride.

I thought about everybody else and their challenges and their triumphs. About a strong scared lady going to a Japanese bath, the joy of getting back on to a bicycle & a lady who grabbed a morphine pump with their toes. The husbands that give the boob a good-bye squeeze, and the ladies that are faced with staying with their family, or selling their house, while they also deal with surgery. And not picking up their kids. I thought about how this is the only place I can come where people actually 'get it'

Sbelizabeth - I have two thoughts for today

Firstly - I am not brave. (This was said earlier but I have to get it off my chest). I am not courageous nor do I take big risks. I am merely someone who got thrust so far outside my comfort zone that I made a decision to survive. Most days I was terrified, especially in the beginning, but the human body can't sustain that level of fear for that long, and eventually has to react. It was like falling out of a plane. Eventually I had to stop screaming, assess my view, and learn how to use a parachute. I did not choose to go up in that plane, and I had to learn on the fly, but I knew I would land. I knew it might be clumsy - but I knew I'd be okay.

Friends compliment me on 'sailing' through chemo. Ha. Nobody saw my private devastation. And few would understand all the precuations I took, and work I did to prepare myself. I accepted the 'sailing' compliment - I was too weary to explain myself.

Secondly, for those in your audience who have not experience BC, but have been told of a loved ones diagnosis. We know you're sorry. You don't need to say it. It's a fight - so don't say how you feel, ask what you can do.  This is soley my opinion - but I was so grateful when people who look me in the eye and say something pro-active. 'We'll get through this' or 'What can I do?'. Cancer is a lonely business and I don't want to hear someone tell me they're sorry. I really don't. 

I had self doubts, and got by on the faith and kindness of others. I was lucky enough to recieve many gifts, and food, and help during my treatments. One that stood out was on a bleak winter day I came in the house after radiation and there was a card in the mailbox with a girl in a life preserver and the caption 'You can do it!'.  Thoughtfulness is so appreciated. Cancer is a lonely, and cancer is 24 hours.

By the way, this same just recently sent me another card, one of many, that said 'You did it!'

sweetpickle

Well said Janet. :-)

MartyJ

Cherrie - 35 years as a teacher = 35 years of public speaking.

nihahi

Good Morning ladies!

bluebird...this is it....this time, things are going to be sorted out....third time's the charm....C'MON WILBUR DO YOUR THING!!!!!!

Bailey....gosh it sounds like things are really clicking for you! So good to hear....are you taking your bikes on your family holiday? Bet this getaway will be even sweeter for you, now that you're feeling so good.

tracy....sooo....sleep last night???

sbe...bet you're knee deep in emails, memos, phone calls and large vats of coffee today. How long will you be off work for your stage 2? Watching the news....CA has those horrible wildfires again...turn off the heat, lady, enough already! Yosemite is on my bucket list...please don't let it burn before I get there!

Deep thought of the day for your presentation: I HATE PINK-TOBER!!!!!!! Hate it with a passion, fume with smoke coming out of my ears with every trip to the grocery store, every storefront window that is filled with pink clothes, pink toothbrushes, pink cookware, pink cupcakes, pink balloons, pink ribbons....HATE IT! HATE IT! HATE IT!

I "get" the original premise of it....I applaud the few companies/events that truly minimize the expenses of their "campaigns" and donate to "the cause". But, I also feel that much of it has become marketing "hype" to sell products, to make companies appear more "socially conscious" without really having to "be" that way. I feel like many of the "runs" are just a venue for someone to collect another tshirt, like "addictive runners" collect run medallions. Don't get me started on when the unsold "pink spatulas" are getting dusty in the markdown bins a few months later!

It feels like bc, for one month, becomes a social event, a marketing scheme, a "brag shirt", a "woohoo...look at me...aren't I a good person cause I have a pink thing"...and it feels like the reality of bc is hushed up, covered in pretty pink sparkles and told to "smile and be grateful"....your personal "hell" is good for business!

Prove to me....show me where the money REALLY goes from your pink-thing....then I'm with You....otherwise....GET OUT OF MY FACE!!!!

Fine....pink-tober is now an established beast...I accept that....but it can become so much more "positive and meaningful"....companies manufacturing "pink things" could use that month to really look at how they support their employees who may be bc patients and their families and make changes for the better. Seminars/discussion groups that focus on how to help people going through, or returning to work post tx. Stores that sell "pink" could do the same for their employees. Hospitals, tx centres caring for bc patients should be overwhelmed with people looking for ways they could help....not just in pink-tober....but year round. Hell, hospitals could do their own "awareness training" for things like lymphadema!!!!! Things like that to me, are what it means to be bringing support and awareness to bc, not toilet paper embossed with pink ribbons in your bathroom for a week! 

I know there are many good things that come out of pink-tober, I understand the "emotions" of some participents in pink events, I don't mean to belittle any of that....I just get completely overwhelmed and disgusted by the "commercialization" of such a difficult, personal "issue". 

rant over.....hope I haven't offended anyone.

Marty....good to hear from you....hope you and hubby are doing well.

Jeannie57

Nihahi, you haven't offended me but I do find a sisterhood in some bc events. Walking in the survivor parade, where we were grouped by year of DX, was so great when I was diagnosed. Seeing people like you who were diagnosed years ago and are still marching on was a great encouragement. Walking arm in arm with a young mom I had just met gave that physical and emotional connection I needed. This year in October I am participating in a fly fishing trip for bc survivors with a bc friend, organized by my hospital. I agree with you that there is an over abundance of marketing pink things and who knows where that money goes, but I like seeing burly football players wearing pink shoes. My daughter and I just bought shirts that say: "Explore your mountains. Self-exams save lives." I may just wear it around the house but I was pleased my daughter wanted to wear one and take a picture with me. I appreciate you saying that you understood the emotions of participating in some "pink" events. For me, it has been a blessing. I make October what I want it to be and ignore the rest.

ssla01

Nihahi. I understand your frustration with pink. In my area, women who can't afford mammograms or who are diagnosed with bc and need help are not helped by the pink people, but by the American Cancer Society or another local group. I believe that pink does a great job of spreading awareness and educating about the importance or self exams and annual checks. However, that being said, I wish some of that money was spread around to help actual women who need testing or other assistance. Rant over :-)

Jeannie57

Oh, and same daughter got a crazy BIG tattoo covering her tiny back of a dragon with a pink ribbon in its mouth. Another daughter is getting a sparrow on her foot with a pink ribbon in its mouth. They are honoring me and others. I just pray those tats don't take on a different meaning by those precious daughters getting bc themselves.

nihahi

jeannie...I'm glad you understood I don't mean to offend anyone in sharing my thoughts. Truly not my intent. I remember feeling the same as you do now, in the early days.....the pink "connection" made me feel a little less alone, a little more "supported", and there was a whole lot less "pink" back in those days.....22 years later....pink-tober has an entirely different "feel" to me.

kuka21174923

Hello ladies! Sorry I've been absent, I've been really busy with school stuff and cub scouts. I'm the committee chair this year, plus a few others, and it's keeping me really busy. I e been reading your posts though.

I've started working out and it feels great. But, oh my, I had to start from zero! I couldn't believe how fast my body got out of shape.

It seems like this time my incisions are taking a little longer to heal, but I'm thankfull I'm not having any issues with them.

Goldie, where are you at with your reconstruction? Have you decided on a ps yet?

Hope everyone continues doing good!

Have a great day!

Tracy516

*DebDylan - I have big hips and I ended up with a SMILE. PS says we can reduce that and smooth my hips. I don't think I will... Maybe I need time to think about more surgery.



*Bluebird HEALING VIBES!!!!!



NO I did not sleep!!!! The Asshole drain is now a PHANTOM drain. I had pain in that breast all night. No fever, no leaking or swollen just pain! Not to mention hubby grilled burgers and that was the first nonhealthy thing I have eating in a month! Heartburn and gas oh my!!This lead to falling asleep at 4ish and HUBBY waking me up at 6:30 to see if I was alright?! Ugh



I still feel fraud saying I have /had cancer. My stage 0??? Are you kidding me?! Lol of course now I can look at my breast and see no nipples. I can live with fear of cancer popping up. But my friends and family are saying "now u can put this behind you". I don't think so. I know joined a club that adds cancer to my name. I am on a road I didn't choose and I am taking my close family with me. Now me and my kids have to fill paperwork out with A check in the "anyone in your family have/had cancer."? I show strength outside but cry because I'm not getting chemo and can't relate to some of you ladies;) I feel like I got the easy pass. Anyway I live it here because I know there is someone that can relate!



Need s nap... Raining here today.

Enjoy your day ladies!

Jeannie57

Nihahi, I'm happy this is a place where we can express ourselves honestly and safely.



Tracy, your feelings are honest and authentic. You are part of this DIEP family, no matter your diagnosis or treatment. My mom was stage 0 and had mx only, no other treatment. I have always thought of her as a bc survivor. You are a part of this club nobody wants to join and we embrace you.

nihahi

me too, jeannie, me too.....we all have the right to express our honest feelings, knowing that we will not be judged by the "mindset" of others. This thread has become a very special place.

tracy....don't you go there, girl!!!!! Absolutely NO ONE is more "authentic" than someone else...Makes the journey different, that's all.

Sorry you didn't sleep....tonight!!!! Think positive thoughts!!!

soooo....my plans for the day are now several hours behind.....time to get busy. Have good days.

liefie

Tracy, I echo what Jeannie said, and I am so happy that you caught it so early, and got the easy pass. Early detection is key. You did exactly what you had to, you certainly belong here, and I truly hope that you never have to deal with the beast again.

Jeannie, your DD's are too precious supporting you like that. You raised them well!

Janet M, you have all the makings of a writer, seriously. Your posts and blog are such a pleasure to read, and you express yourself so well, in the process putting into words what we all feel. When do you start writing a book?

Nihahi, I hear you about pinktober. I cannot put my finger on exactly why, but the whole thing just makes me uncomfortable. It all started out for a good cause, but I'm afraid in many instances it has become just another marketing ploy to make more money for already rich people, and very little actually goes to the original cause. I have a very hard time with that, and feel negative about the whole pink campaign. It is unthinkable that there are people so unscrupulous and so unprincipled in this world who will use something as traumatic and devastating as breast cancer to feather their own luxurious nests/retirement/whatever even more. I'll just stop here before I go too far . . .

Morningsun1

I tried to make a list of the things we share. Here is what I have:

Knowledge and experience of our bc journey

Tears and laughter

Anger, frustration, pain, suffering, fear, anxiety, comfort, support, (XO) and prayers,

A glass of wine, a hike, lunch, and DVDs

A number of my emails to my ps started out with: “My DIEP sisters said…”

……

We are Wilbur’s Flappers, TOWANDA!

goldie4040

Tammy, that's funny about your emails to your PS.  My surgeon professes to be so empathetic and understanding about what women with BC go through. In one of my emails to him I sent him a link to the forums, and told him to read! He emailed me back, and thanked me. 

Kuka, I am so glad you are getting back your normal life.  That is very good to hear.  We do miss you being around more often, but it is better that you are busy with the normal things in life. I will PM about where I am at with my decisions.  

I am still determined to try to expand as much as possible. I have had too many opinions from PS and patients that are keeping me on that path.  I also have one more big test to get out of the way.  

Moviemaniac

Sisters-can't stay long-working in front yard before my body goes on a forced Holiday......



Bluebird-love and healing thoughts coming your way......we are ALL in this together......



Tracey-I GET you.....100%........I too used to feel that way......I will add my two cents to our BC sisters'........ Just because our diagnosis was stage 0, without chemo or rads, does NOT mean we CHOSE to be here. Like everyone else, we belong to the club NO one wants to join, and we are stuck with the Cancer label for the rest of our lives. We may have arrived here differently from other BC sisters, but, we are STILL here, nonetheless. Only difference? For whatever reason, they caught ours early enough to spare us from rads/chemo. Other than that, we are ALL in the same boat. XO



Nihahi-I think we discussed Pink..... During our hikes. Right there with you, sister. Other than the sense of cameraderie with other BC sisters, I feel "used" in a sense. I do NOT want to offend anyone....merely stating how it makes me feel.



Now, I REALLY have to get outside and start digging! Love to you all!

goldie4040

Hi Movie,

I noticed you waited quite a long time between stage 1 and stage 2.  Was that a choice, or was there a reason? I am jealous of your yardwork. I wish we could get out and work in our frontyard. It's 100 here today.  It is cooling down a bit in the evenings finally, and I have walked twice this week after the sun goes down, and will go again tonight.  It feels so good to get out there!!!!  Can't wait till I have to put a sweat shirt on.  Most of us in Texas don't even own a winter coat. 

JWoo

Hi Ladies!

I have my first consult with my recon surgeon for possible DIEP flap (possible immediate with double mas)- and I would really love it if you could offer me some good questions to ask her about it all. I am nervous and really just need some guidance so I can get as much info as possible. If you have the time and inclination, could you PM me?

I woud appreciate any help.

Thank you and love to you all!

Anonymous

Tracy - from a Stage III sister.... please do not feel any guilt...that implies you did something wrong and you didn't. I am thrilled when I meet stage 0 ladies! Makes me so happy that you didn't have to go through the entire *uckery!!! Praise be to God!



I am with Liefie, if we can't eradicate it (yet) let's find it early.



And if we can't find it early, let's provide support and therapy and recovery for those who do have to endure some or all of the *uckery.



I'm on the fence about the whole pink thing. I didn't and don't want to wear the pink "stuff". Of course I have pink stuff because when you get bc everybody thinks you need pink stuff. I have gotten decked out three times. Once for a Komen event where I volunteered at the kids activity tent (my bff from high school has chaired the kids tent for 16 years). I helped little children fill out their tag that said who they were running for, among other things. Most were running for their moms or grandmas or aunts....a few for their teachers. My bff ordered an azalea with my name on it and it was part of an arrangement at the front of the stage. It gave her something to do for me and it was very special. I talked with volunteers who were doing it for their family members...and they were so happy to meet a survivor that day. The two other times were for "pink" football games....one to support a friend with bc....and one in my little home town....My sister and BIL and their kids "bought" a Jersey with my name on it. The kid who played in it was a senior. My family met his family after the game (where he presented me with said sweaty, dirty, pink jersey!!!! Eeeeewwwww!) His mother saw me first and said, "Are you Ryan's survivor?" I said yes. She got big tears in her eyes and grabbed him by the shirt, "Ryan, Ryan....this is your survivor!!!!" We did introductions all around and she told me that it was her son's idea to do the pink game. She said he just came home one day and said he wanted to do something to support women going through cancer....So she helped him make it happen. My sons shook his hand and thanked him. It was very moving and a night I won't soon forget. I am so glad I allowed my sister to do it (truthfully I didn't want to play at all but knew they needed to do something for me and who am I to squash their heart felt idea?)



I agree Nihahi, it's all very commercialized and definitely several organizations are happy to take their share. But I also think the people involved..at the volunteer level anyway all have their hearts in the right place and are trying to do what they can to support women and families.



Oops gotta run! Ttyl flappers!

Dyvgrl

Hi ladies. Thought I'd pop in and say hello. Have round 4 AC tomorrow then I'm on to Taxol. Can finally get a fill after my AC treatment is done. PS wanted to wait til I was feeling better. Wanted to ask if anyone here has done the Metformin trial while on chemo? I started yesterday and added a few supplements to the mix to help with SE's. Can't wait to get off the tx train and back to recon!

hrf

So hard to keep up with this thread. Just read the last 3 pages and am moved by all the stories and comments. I don't know that I have anything new to add but I'll make a couple of comments.



I'm tired of people (not necessarily friends) looking at me and then asking "how's your health?" What do they want to hear when they ask that? I just want to have normal conversations and a nice "how are you" will do.



From my friends I appreciate the calls, the visits, the food and having them say, "I'll be here for you". I don't want them to say "you'll be fine". No one knows that.



And I want people to understand that there is no cure. Unfortunately all the awareness hype makes people think it's curable. And while early detection is good, it is not a guarantee that the bc won't metasticize.



Saw the PS today. One more drain gone but still have one more. Very yucky. PS is recommending a new ointment for the area that is not healing well. I hope it helps. And I got a bra! She sells them out of her office. Only $20 and soft and comfy with a front closure.

ssla01

Dyvgirl, it's good to hear from you. Glad you are working your way through treatment and headed back toward reconstruction!