Just Venting

Anonymous

Ah, Binney, the voice of reason. You truly inspire me. Yes, we need to use this time to educate instead of letting them tie survivorship up in a pretty pink bow. I will put on my thinking cap and see how I can have an impact locally. I will definitely hand out LE info at my BC support group.

Nordy

Kira - I would love to know what Stanford has come up with because I am getting very close to taking drastic measures.

Suzy--- LMAO. Yes, you should write for "O" - maybe you would make it more interesting for all of us. 

My favorite is the person that said to me, "Well, you know, only good people get cancer." Hmmm... I guess I just wasn't bitchy enough... but I am going to remedy that starting today. lololol

olearca

I am new to LE, but man, I HATE it.  And those f#$#%%ng pink ribbons and crap are starting.  My friends think they are being helpful, but man I want to scream.  So, today, I posted on FB my status as "I hate PINK, just saying" ....it was my way of saying, don't expect me here in October and don't send any of that pink crap my way.  One friend, got it immediately and another said, oh, the color or the singer?!  I didn't realize it looked like I hated the singer, Pink.  Made me giggle at least. 

Suzy, you are so funny!  I'd love to stick a pen in more than a few eyes. 

kira66715

Breast Cancer Action has "Think before you pink" page

http://thinkbeforeyoupink.org/

And the classic essay:

http://www.barbaraehrenreich.com/cancerland.htm

From the final paragraph:

This is the one great truth that I bring out of the breast-cancer experience, which did not, I can now report, make me prettier or stronger, more feminine or spiritual -- only more deeply angry. What sustained me through the "treatments" is a purifying rage, a resolve, framed in the sleepless nights of chemotherapy, to see the last polluter, along with, say, the last smug health insurance operative, strangled with the last pink ribbon. Cancer or no cancer, I will not live that long of course. But I know this much right now for sure: I will not go into that last good night with a teddy bear tucked under my arm. 

Kira

Marple

Pink October starts in September where I live.  QUICK!  Could someone please send me the vodka brownie recipe.

This thread has given me a bit of a pick me up.  Reading your comments helps me realize all my reactions to LE are normal for those of us who have it.  I hate LE and I'm tired of explaining what it is and how much of a pain it is to deal with.

I suppose some company will come up with a recipe for pink brownies.  Hahahaha.  Morons, ahem or is that oxymorons?

BeckySharp

Hey if we drink enough vodka our brownies will look pink!  I was at a "boutique" to get special bras ordered for myself.  They sell everything--even pink pins.  After the lady fitted me and I was leaving she said to wait she had something special for me.  She gave me a pink pin.  Inwardly I was barfing but I graciously thanked her.  This is now the seventh pin I have been given since my surgery in Feb!  They are all alike.  What do I do with them?  Line them all up on my lapel.  Pnk has never been  my favorite color anyway.  I am glad they do not use the color blue!  Becky

Binney4

Becky, get some acrylic paint and paint them black. BC ain't pretty.
Binney

Nordy

"This is the one great truth that I bring out of the breast-cancer experience, which did not, I can now report, make me prettier or stronger, more feminine or spiritual -- only more deeply angry. What sustained me through the "treatments" is a purifying rage, a resolve, framed in the sleepless nights of chemotherapy, to see the last polluter, along with, say, the last smug health insurance operative, strangled with the last pink ribbon. Cancer or no cancer, I will not live that long of course. But I know this much right now for sure: I will not go into that last good night with a teddy bear tucked under my arm."

Totally stealing that... It is how I am feeling right now, for sure! Completely Pissed Off Patty, Debbie Downer, Kiss My Ass Katie... Go F*ck Yourself Flo...  LOL... and any other raunchy names I can come up with... 

Unfortunately, I LOVE pink! And blue too! You would think I work in a newborn unit. 

kira66715

Oh Nordy, am I going to have to drag out my old and tired reference about why it's okay not to have a positive attitude?

We all go through those dark moments--we can put up with it, and then there's just accumulated tension, and sometimes, as all the frustration just mounts and explodes.

All right, I'm going to find that reference:

http://www.breastcancer.org/symptoms/understand_bc/fears/ask_expert/2002_06/question_04.jsp freebird: freebird: 

 freebird: Can you cause your cancer to come back just by being afraid that it will?

Answer -Rosalind Kleban, L.C.S.W.: I am glad that this question was raised, because I'm sure that is on the mind of the majority of people. It is a very popular notion in our culture today that if you have a positive attitude you can get rid of your cancer, or that you never get it or that it doesn't return. If you think about it, that notion is truly an oxymoron. An oxymoron means two things that don't go together-like "jumbo shrimp." The reason I call it that is to think about telling somebody what is the worst news of his or her lifetime and then ask them to be positive just doesn't make sense. Having bad feelings and down days is neither good nor bad-it's just normal. The only people we ask to have a positive attitude at all times are people who have had cancer. I can be miserable all day long and nobody is going to reprimand me about being positive. You only 'have' to be positive if you have cancer.

Having that philosophy or notion or belief is like living in tyranny. What it does to you as a patient is that on days that you are down or depressed or sad or anxious or worried-which is normal-you will feel even worse because you have accepted the notion that those are bad feelings. You need to work hard to get rid of that notion. It is not fair. It is putting a burden on the patient, while it serves many good purposes for the people who are saying it. If you are going to be happy and positive all of the time, then I don't have to worry about you. It also leads me to believe that if I am positive I will be fine. The philosophy serves everyone except the patient.

You need to know that people will tell you that you need to be positive. You need to be prepared in how to handle that comment coming at you, and that is something that you want to do in a way that is comfortable for you. What I think works is that when someone tells you to be positive, suggest they walk in your shoes first. And inform them that when people speak to you that way, it's really not helpful. You need to protect yourself as much as possible from that theory because it is burdensome and hurtful. A bad attitude will cause only one thing and that is a bad day. The best reason for having a good attitude is that on that day you will enjoy yourself. But neither the good nor the bad attitude will affect the illness. It will affect the quality of the day that you are having.

Your fear is just the natural outcome of having this diagnosis. It will not cause the cancer to come back. I work with a thousand women a year and I have never met one that doesn't suffer from fear, either enormous or very enormous. It's normal. Not bad, just normal. It will have no impact on the course of the cancer.

 This is almost 10 years old, but I drag it out when I need it.

Kira 

Nordy

Kira! Thank you! When I was going through treatment and I would be having a down day, my husband would look at me and say, "PMA." I was like WHAT? He would say, "Positive mental attitude." I told him he could shove his positive mental attitude and he could only talk to me about it if (heaven forbid) HE was ever diagnosed with cancer. It's funny, I don't have a problem sincerely telling other people they are allowed to have a down day, but feel like such a sissy when I do!

olearca

My wonderful, loving and amazing DH told me that I had to find the silver lining in all of this.  I nearly took his head off.  Now, he's a freakin' glass full kind of person but seriously, I told him that if they ever cut off his balls, he could come and talk to me about silver linings......

Catherine

Kay_G

Oh, your boots sound so cute!  Go get 'em Suzy!

olearca

Kira,

The ehreneich essay was very powerful.  Thanks for sharing.  I had not seen it before.  Really summed it up for me. 

Catherine

kira66715

Catherine, she wrote Bright Sided about the culture of positive thinking, and I found it really powerful also. The cancer essay was in there as well.

I've been a fan of hers since "Nickled and Dimed"

Kira

sundermom

I totally missed my LE therapy appointment yesterday.  I showed up today instead.  Good grief!  I swear LE is taking more out of me than chemo did.  I just feel whipped all of the time.  I've been trying to kind of keep a log of my symptoms and when they flare.  Long periods of working on the computer and wearing a bra definitely seem to tee things off.  I have my Softee cami from post BMX, but it shows depending on the neckline of my shirt.  Anyone have another brand of cami they like to wear instead of a bra?  

exbrnxgrl

A word about those (bc survivors) who say, " thank goodness I don't have lymphedema." They are terrified that someday they might and are petrified that the risk is always hanging over them. They are just as uncomfortable with the possibility of LE as those who haven't had cancer are with the idea that someday they might. Caryn

Nordy

And Caryn, you speak for all of the BC survivor community as a whole? Just curious because I thought this was where we could vent without someone coming in to correct us... Going to fend off some cancer now by being b*tchy and saying I feel like we were all just reprimanded and don't particularly appreciate it. Also want to say a few other things, but will just stop there.

exbrnxgrl

No, I would never presume to speak for all bc survivors nor was I correcting you. Just expressing my opinion as to why some people act/react the way they do. I apologize for upsetting or offending you and will not post to this thread in the future although I was surprised by the level of vitriol my comment elicited. Best wishes, Caryn

Nordy

Caryn... maybe on a different week it wouldn't have elicited anything. But on this particular week... for several of us, LE has really been a downer. So we are here to vent it all out (as the title says) and I just think that at this point in time it is particularly hard to swallow a comment (because if you haven't noticed, I am a bit bitter), coming from someone who I presume does not have lymphedema. You, of course, can correct me if I am wrong. And please don't feel like you can never post on this particular thread... but maybe this week is not such a good time to do so.

yellowdoglady

I hear you all, and I still wonder why strangers think it is polite to ask WHAT is that THING ON YOUR ARM?  I have worn a compression sleeve for two years because I have lymphedema after losing 14 lymph nodes.  I can take it off for a day or an evening, but if it is on I don't have to worry about ending up like my Dad did, with an arm six times its normal size and doctors wanting to amputate to save him from more suffering.

So when I heard today, "Do you have tendonitis, tennis elbow?"  I didn't even think that was directed at me.  Then it got louder.  I turned around, and the asshole was pointing at my sleeve.  I said, no.  I have a bit of lymphedema.  The jerk wanted to know what from.  I said not tennis.

Sometimes, I get angry enough to want to send a message to jerks like that.  At least once a week, someone thinks it is polite to ask me in a lobby or elevator or on the street what is wrong with me.  The fact of the matter is that nothing is wrong with me.  Something is wrong with them to think they have the right to ask such a thing of a total stranger.  I could silence them by saying I had cancer and they should shut the fuck up, but that would not be educational.

I'm trying to get together a list of what to ask in response.  Perhaps you can help me.        

          

Suzybelle

Caryn, you are always welcome here...and I think you're spot on about other bc survivors being scared of LE.  I don't blame them...I was scared, too, before I developed LE.  I try not to take being a pariah personally...I do get it, and don't blame others for being scared of it.

Yellowdoglady, it gets old, I know...but like you, I try to look at it as an opportunity to educate the masses on the very real issue of LE that no one seems to want to acknowledge.  But I have come up with some great answers.  My all time fave is "Gonorrhea." but I haven't had the guts to use that one yet.  My DH likes, "I was attacked by a bear."    Think of it as a way to get the creative juices flowing.  heh heh.

Nordy, you need hugs, lots of brownies, and an escape pod (I have always wanted an escape pod).  Please hang in there and know that next week you will probably have to be offering me hugs and brownies...It all just gets to be a bit much sometimes, doesn't it?  All I can tell you from my own experience is that thank the Lord those blue patches don't last.  It eventually passes.  But I can always count on LE to bust my bubble. 

I am steeling myself for the lecture my LE therapist is doing tomorrow...she's going to do MLD and wrap me tomorrow in front of about 60 medical folks, and then I will answer questions about how LE has affected me/my life/my self esteem, yada yada yada.  I am determined to look at this as an opportunity to educate and not get down about being a freakshow with no real cure...but as I said, it's hard sometimes.

Hang in there, Nordy.  You bring so much to the forum, and you help me and all of the rest of the swell sisters just by being here. 

Suzybelle

BeckySharp

Suzy--You  have guts.  I don't know if I would let my therapist do MLD on me in front of 60!  Go for it.  Stick you tongue out at them if "they don't get it".  Maybe they should let you give a speech after because you know how to tell it straight up.  Seriously, I do hope it raises their level of knowledge about LE.

Nordy--It does get you down.  I hope you start coming up soon.  Hang in there.  We are all rooting for you.  I look so forward to your posts.

I never thought about bc and pink.  I was so focused on a cure for Cystic Fibrosis as my nephew has it rather than bc as there was no cancer in my family.  Before this I could not have told you October was bc month.  I have had a steep learning curve since February.  I was so afraid of LE that I told my BS right before I went under that I was afraid of getting it.  At that time I had no idea of the total ramifications of having it.  If I had I would not only been afraid but terrified! But I will keep working at it and getting info and assurance from all of you here.

Am off to Raleigh to my godgrandaughter's 3rd birthday.  My sister and 3 yr old great nephew are going with me.  Should be a fun weekend with little ones.  Even with all of the time that has to be spent on MLD and exercises.  Oh well......  If it causes a flare I will be back on venting.

Marple

Suzy, I'd love to be there to watch tomorrow!!!

kira66715

Caryn, the vitriol you experienced is the fact that we feel stigmatized--and often the most stigma comes from fellow survivors who post that "thank goodness I've never developed LE" and all the pink celebrations never, ever include a woman in compression garments.

There is so much LE out there. Much more than is admitted to or diagnosed. 

We don't want pity, and there are times that being a pariah, or the example of "there but for the grace of g_d goes..." just gets plain old.

Your post was entirely reasonable. There are women who come on here, and kind of challenge us: like "I had a gazillion nodes out and weight lift daily, and I never got LE"--as if our getting it was some kind of moral failing.

You are welcome here. Just know that dealing with a chronic illness, where we often have to fight for proper care and deal with the emotional repercussions, can leave us testy.

Kira

Nordy

You all know that you are the best... right? I think it has just been an unbearable week for me. I am so sorry to be such a downer. It is not just the lymphedema... that was just the tipping point. This time of year always gets me down. First it is was my birthday on Tuesday... which should not be upsetting - but this year I got braces: long story, but 1. I should have had them as a teen and 2. I had to have some work that damaged my teeth behind some veneers from chemo - they don't want to replace until my bite is fixed... so I am newly married to an orthodontist for the next 18-24 months. SO - lots of pain Monday and Tuesday, lymphedema, memories of having my R mastectomy after 6 months of chemo on Sept. 26, 2005, fighting with my husband, so much so that I spent my birthday eating soup (thank you braces) at a restaurant with my two girls while my husband ran off and went biking (SOB)... indecision regarding a pending appt and treatment of my LE in "drastic measure" kind of way...  and my world felt as if it was spiraling out of control. Slowly pulling myself out of the dark muddy pit I have felt like I could not get a grip to get out of the past 6 days. Just a culmination, for sure, but not even that bad... so again, I feel like a big sissy when I have days where I just can't "handle it". I would blame it on PMS, but I am surgically menopausal (another sore spot with me) - so can't even have an excuse there! Anyway, I am riding 65 miles tomorrow... out on the open road with lots of time to just let my mind go. This is usually therapeutic for me and I am hoping to release lots and lots of endorphins in my way of self medicating! 

On another note... Suzy, I am going to use the gonorrhea line...  If I am not in the mood for a conversation I will just say it is from the last person I punched that asked about it. People kind of get quiet from there... not knowing whether to laugh or run.

Suzybelle

Nordy:

Uh...YEAH....I would say you have had a sucky week.  You definitely deserve a fun weekend.  And while riding 65 miles on a bike sounds like pure hades to me, I hope you have a blast!!! 

I am also enjoying surgical menopause and have fat splurging from my body like a bad Eddie Murphy movie.  WTH??????  Thank you, hysterectomy and arimidex.  My onco. and I are going to have a serious talk today....I am going to threaten him with crystal meth. use (ME) if he can't give me some hope about this stopping soon.  I have seriously gained 8 lbs. in 2 months and have the appetite of a teenage boy, along with the lovely figure of a weeble. 

So I have started a new diet, and am just generally pissed about how tight all my jeans are right now.  So I may join you on the 65 mile ride. 

Hang in there, friend.

Nordy

Suzy - You are welcome to join me on a ride ANY time! That would be a blast. And yes, the weight is definitely WAY harder to get off now... and it all seems to go in the middle... WTH? One good thing about the braces: I don't want to eat much anymore! But that is a double edged sword because I need fuel for biking and most of the biking food is sticky and nutty! So, am going with Gels and Boost for fuel tomorrow! I suppose I should bring my toothbrush... LOL  Hang in there!!!

kira66715

Nordy, I got so stressed just reading about your week: I needed to vent! Seriously, it's like the perfect storm of stressors--way too many to handle. Hope a nice long bike ride lets you work off the stress and gets those endorphins pumping.



Suzy--not the crystal meth! (Keep thinking of "breaking bad"...)



I did read somewhere that in the effort to rid our bodies of the estrogen that our tumors have receptors for, the oncologists sometimes loose sight of the fact that there's more to our bodies than the risk reduction for our breast cancer (this from a woman who is defying natural law and staying perimenopausal on tamoxifen at an advanced age....My onc says 5 years of tamoxifen and out, the NCCN guidelines say 5 years of an AI then...who to trust??)



Totally off topic here.



Nordy--have a great ride, and Suzy, hope the onc has good news.



Kira

exbrnxgrl

Suzybelle

Thanks for your understanding. That was all I was trying to say. This is such a tough disease to have to deal with on so many different levels. It plays with our emotions in untold ways but kindness is always a mitzvah (blessing). Caryn

Anonymous

I love the book, "Bright Sided"! Barbara E. is terrific. She just tells it like it is. And, Kira, I'm always happy to have you drag out that reference. It never gets old. 

Nordy, you definitely have had a trying week, and I hope your ride does you a world of good. I have to say that I admire your tenacity and belief in yourself to be so physically active even with LE. When I think about whether I can do (or will eventually be able to do) some of the physical activities I used to prior to all this shit, I think of you. Really. I don't know how you do it, but I love that you do. It gives me hope.

Suzy, I hope you had a great day helping your therapist demo MLD and doing a Q&A session. I know you did a great job, and I wish I could have been a fly on the wall just to see you in your boots and flashing that smile while you told all the down and dirty facts about life with LE. Okay, maybe not smiling all the time, but lots of 'tude! 

I have been flipping back and forth between being pissed off and crying during the past two weeks. I hate Blue Cross and my supposedly Cadillac plan. If I have a Cadillac plan, then I have no idea what kind of coverage others have! I REALLY could have used the Solaris vest asap after surgery and definitely over summer. I almost want to give up and just buy it so I have one to wear while I'm appealing to have my insurance cover another one. Even once it's approved (if it is), I will have to wait for it to be made, and then modifications will probably be necessary. So, I'm guessing I'll be wearing the vest in January? This is just not right . . I need it NOW!!!

November is the month I was diagnosed, and it always stirs up old emotions. I hate that pink October has the effect of bringing it to my attention a month earlier. This year the change of seasons also means trying on clothing to get me through my first fall and winter without my implants and no prothestics. I guess I could try and find a tank so I could wear a light prosthetic, but I just don't have the energy right now to try and find another undergarment that fits. The dressing room frustration often leads to depression, because those effing mirrors are so mean . . and remind me I should at least be working on having a nice bottom, legs and waist if I can't have the top. 

I need to try bouncing on the ball!