January 2014 Surgery Sisters
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wishing you a speedy recovery, Beverly.
Praying for you, Eve
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thanks Ann...hope you are all healed up.
you've been through so much....let us know over here on bco...miss you guys.
My son Steven has his mammo and US tomorrow....boy oh boy I am a nervous mama.
Steve has a lot of confidence in his doc....praying she is very diligent.miss all of you ladies
mary, I know you and john are preparing for johns scan...holding your hands
love you all,
Eve
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good luck on Monday ev
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ok so I'm coming here right now because I feel it's a safe place. A nonjudgmental place. I my husbands been running all day with the kids today to games etc. when he got home I asked if he could help me in the shower. I'm sore standing up, get dizzy and nauseous and knew I would need help. Well he helps me in the shower and turns the water on. Needless to say, the water was ice cold and I started screaming and crying. It was so painful. I know he didn't do it on purpose but omg I felt like I was going to lose my mind! Then I asked him to turn water on warm and put it in holder. It's an overhead shower spray. He apologized and I turned to wall and just started crying. Sobbing hysterically because as I rubbed the soap on my body once again I didn't recognize it. My stomach has lumps and bumps and scars just like my breast. When he realized I was crying he asked what was wrong. All I could do was yelled out I'm deformed! I'm a mess. My breadt, my stomach, I have no sex drive, I'm in pain, I can't work right now, I can't do what needs to be done at home. It's just so emotionally overwelming. I miss the old me and she's gone forever
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Hi ladies,
Surgery went well and very quickly yesterday...just an hour. I still have my nip and areola...boy my BS is good AND I look better that before, wish I could have gotten the little nip lift on the other one. Will have pathology back on Christmas Eve...fingers crossed.
Beverly hope you are doing better. I was reading the other day that the anesthesia can make you depressed for a bit. Sometimes it takes a while to get it out of your system. Hang in there!
Mary, how did John's scan go, hope all is well...love you both.
Making this short...still kinda brain foggy ...and buzzy..;)
love,
Eve
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Eve, so glad you are recovery nicely. Fingers crossed on that path report. How is Steven doing?
Beverly, it's been a helluva couple of years....wishing you an easier 2016.
I have moved on to zyvox orally. Saw the ps yesterday and now waiting to have another MRI scheduled for next week before the antibiotic is finished. Keeping fingers crossed that the fluid is gone. I don't like the alternatives. My gut is starting to revolt from being on nonstop abx for almost 6 weeks but otherwise fine.
Holding off starting the aromasin until I am finished with the abx. I don't need to introduce another change to my system. 2 years this week from my initial diagnosis. I still find it hard.
Wishing us all a peace filled 2016
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Ditto Ann...it still is hard. Not over whelming but "it" never leaves you.
Just watched a commercial for vets that have been paralyzed...sheesh...what do I have to complain about? NOTHING!!!
Looking forward...to the future but living in the moment and never looking back...that is my goal..
love you all..
worried about John and mary.......
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Hi everyone!
Well....we just got home and I've been offline. Sorry to make you wait, Eve.....The results are in....COMPLETE RESPONSE!!!!!!! He is officially cancer-free, NED, nada, nil, zero, zilch, zippo - it's gone!!! We are so happy, relieved, grateful, thankful, and just really really tired of kicking cancer's a***! But we WON - once again! What else can I say? I'm just soo sooo happy - we got what w wanted for Christmas!
Eve, glad to hear you are recovering nicely! I'll be thinking of you and hoping for the best! Wishing you a Cancer-Free Christmas!
Sending gentle hugs all around. Yes, Ann - a peaceful, calm 2016...that's the other thing on my wish list!
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my tiara got flipped from doing cartwheels for Mary and John
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MARY!!!!!
FABULOUS NEWS!!!!
WOW, WONDERFUL!!
WHOOP WHOOP!!!
happy happy joy joy
ok...off to finally take a looooong hot shower. had to wait 48 hours....I am sooo ready to get squeaky clean.
Love
Eve
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Thank you ladies!
Uffda. Okay - here's the latest. I had put off my annual skin check with the dermatologist like I usually do, but this time it got later and later in the year because I was so busy with the DH, don't cha' know... soooo I asked to be put on the cancellation list. I was able to get in today and good thing, too! There was a spot on the inside of my lip that I pointed out to her and she thought it looked atypical. Ewww. I hate that word! So....I had a biopsy and they say it will take a few weeks for the results.
I'm not worried, though, mainly because I'm too worn out and exhausted. I'm just going to take a lot of xanax and try to enjoy Christmas, lol!!
~M
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OMFG!!!!!! My stupid alerts were off again! If Ann hadn't posted something on our Sister's page on FB, I wouldn't have even known about your surgery Eve. I kept thinking I would sit down and send a message, but have been crazy busy. If it wasn't so late in Florida, I would call you now Eve and tell you myself how crappy I feel for not being a better friend. I'm off tomorrow. Please let me know what the test results are. I love you very much, and do care.
So I read about a month's worth of posts. Beverley, you have just been through it, for real. I hope you heal quickly so you don't have to lose too much pay.
I started back in rehab for my knee and am seeing an acupuncturist, so there is something every night after work, which is why I'm running around so much. I do everything on my phone on my lunch hour, including paying my bills, so I hardly ever get to sit at my computer at home anymore. I'm waiting now for a pumpkin pie to come out of the oven.
Beverly, Ann is right, the libido stuff is part of all of this BC crap. My gyn visit was just depressing. The NP said I was "fragile" and the exam actually hurt for the first time ever. She suggested I visit the adult store for some "equipment", and recommended a lubricant called "Pink". It's silicone based, and makes things easier. In my case, it's not like I can do anything else...not having a partner and all, but it was my first time buying toys.
Eve, I'm down a little bit in weight, but still have 30 lbs to lose, so I feel you.
Ann, I saw your FB post, and am so very sorry about your mother. Between that and the BC anniversary, it must be very challenging to get into the holiday spirit. I so hope that you get to keep that implant!
Merry Christmas, or Happy Holidays, or whatever brings you all joy at this time of year ladies. We are all warrior sisters, with the scars to prove it, but all of you are beautiful.
Diane.
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Love you Diane!!!!!!
Just wanted to say
MERRY CHRISTMAS
MERRY CHRISTMAS
Love all you ladies......
be well, celebrate joy, even for just a minute....
I was pretty grumpy today and then a special friend texted me.......that was all it took to feel the joy and happiness of having not only a good friend but all of you too, in my life.
Off to eat too much and then home to watch A Wonderful Life......with a kicker of tums...
Love to all
Eve
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Love you too Eve ❤
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Oh gosh, Diane...sorry about that. I probably should have figured that out and said something on FB. I know that's happened to me before, too. I swear my brain doesn't work anymore....
Anyways, Merry Christmas to all! I'm trying to stay away from social media for the holidays, but it's hard. You ladies are part of my family. In a lot of ways, you know me better than any of my family or non-cancer friends.
Sending you all hugs!
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Mary just to let you know I was hacked on Facebook from someone in Ghana so I shut down my whole Facebook account- it's killing me
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Well, well, well,
Very interesting day. I could, and would like to come out with a whole litany of expletives but I won't. I'll be nice, but wth. and wtf
Yup that little tumor was cancer. CANCER, AGAIN...sheesh.
Good news, Dr. Minton got clean margins....so the beast is gone.
It feels so strange, almost like a new wart was removed. No Biggie....
\I'll see my doc on Monday and discuss treatment stuff..Tamoxifen and or radiation.....No chemo because the tumor was the same as the others...I just have a breast that likes to grow mini cancer tumors....ha ha ha
I am tired ladies, sorry for the sarcasm....
Been told lately by 2 lovely friends that I am stubborn......oh how I love honesty,
but I think I will just opt for twice a year MRIs and go with that. Can't go with the uncertainty of the crappy side effects with the options that are out there.
The last MRI that I had....well well well the radiologist missed the tumor and in his report said I was fine....My breast surgeon found the tumor on the MRI....so if we had put our trust in the radiologist...I would have had a full blown stage 4 by now....
Done done and done. but nothing really works...I know we have to believe that we are good that this cancer wont come back.....
sorry, but I am so very tired of all the promises out there about how we can treat this and that and bombard you with this and that...
I just want an honest answer.....You all have been through many more days of treatment that me...I don't know how you have done it. I admire each and everyone of you. You are my hero's.
Is it ok for me to be angry for me and all of you?
Ill post this....and maybe I shouldn't but well
E
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Eve,
You have every right to feel every feeling you have right now and react the way you feel you need to. Scream, kick, swear, pray, hold loved ones closer, cry, laugh etc! Cancer is a beast, an unpredictable life threatening beast from hell!
You have already been through so much! It is only fair that once you've been through it and get an all clear, that should be the victory! Having to face the beast that you've already beat just isn't fair. Just use that tid bit, that you've beat it before you can beat it again! It absolutely sucks!!! I am sending you gentle hugs, prayers and friendship!!!
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thanks Beverly,
yes it stinks...
In my ranty mood I should have said by this time next year I would have been stage 4...because the dolt radiologist missed the tumor.
You know, I don't feel as if my cancer thing has been a lot to contend with. Been through much worse with people I loved in my life.
My frustration comes with there not being any concrete information to base my decisions on. It is my life after all. I want the facts, the stats, I have a hard time with...well we don't know but it is the best guess we have based on experiments in the past. hmmmmm.
So if in the long run....this whole cancer thing is a crap shoot...I want to be the one shooting the craps. AND I take full responsibility after speaking with the docs.....for my care.
If I were Ann or remember lighthouse lady? I would punch this cancer in the face...I'd give it all I had. But the docs said I didn't need chemo or rads 2 years ago....so take the AI hormone therapy stuff....well I didn't because my back was killing me. Turns out I was right to not take the AI because it ruins your bones AND the vertebra in my back are totally screwed up...whoo hoo. Doc says good call Eve for not taking the AI. YOU SEE???
The insurance factor or lack of it has a play in this game too. The "excisional biopsy" I just had cost us $ 4160.00 for just the hospital...in actuality, with insurance, the bill was $16700.00 face palm on that!! WTH
Do you all have any idea what you are paying with insurance vs without ins.
ok I am sorry Ill quit now
In the end of it all
there are no better, more beautiful, honest and kick ass strong women ever......than you lovely ladies right here
peace
i'm taking an Ativan and going to bed....
love
E
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Eve,
I feel for people that have to pay out of pocket for healthcare. I'm blessed that my husband is a state employee so I've had to only pay copays- $15 dr visit and $35 ER visit. I've never paid for the surgeries. Our insurance covers them 100%. I even get $600 worth of post mastectomy bras a year.
I agree with the crap shoot! All the money collected from fundraisers etc they can't improve care, help with costs etc?
Our social worker at the cancer center actually helps locate money to help people pay their bills. Do u have something like that that can help out
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the thing is with the bills....where I live if you don't have insurance everyone reduces the amount they would charge the insurance companies by 75%. I think the $4160.00 is reasonable for the nurses and OR. The nurses are awesome by the way, really lovely. We can handle the reduced fees. We just have a HUGE problem with the original charges. If we paid for insurance through my husbands job the monthly charges are $700 with a $13000 deductible. that amounts to $21000 out of pocket not counting co/pays.....so this surgery will amount to $ about $6000 and I already spent another $1000 on Mri's and xrays. So we are still ahead of the game.
I am just confused as to why the charges to insurance companies is contracted to be so high in comparison to what I pay as a self pay. I have found my docs and hospital love self pay patients boy oh boy things have changed.
K, I really am going to bed now....sleep helps to kick cancers butt too!
e
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Well hell Eve. I was soooo hoping that this was just a benign lump. Get rest and advice. I think I remember that you hated the last MO, so maybe your BS can refer you to someone else, in addition to a radiologist. Gather as much info as you can from the docs....of course I know you will do your own research. This truly sucks, and I'm pissed for you. We are all here for you. Put on your tiara, and feel the hugs and love that is coming your way. Love, Diane
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So.....this is really scary - I mean we knew that there was a new tumor, but the fact that the radiologist missed it on the imaging. I just wonder when your BS discovered it? Did he/she see the MRI and then "discover" the lump during your exam? Did your BS not see the image or read the report? Either way, I just feel for you. If it were me I'd be freaking out big time.
I know what you mean about them not recommending chemo or radiation the first time around. That was my experience, too. But the good thing is that supposedly radiation works very well for zapping local recurrences. I can't speak for chemo and don't even want to compare my husband's experience as it's ten times worse than what they give those with breast cancer.
I'm glad they got it all. I'm not sure what they're recommending for you, but if it were me, I would do it and worry about the cost later. I don't know anything about self-pay. I do know that my husband's bills, paid by insurance, is now over $200k and still climbing.
Cancer sucks. At my clinic I've talked to many patients who talk about selling their house and traveling across continents to be treated. They'd do anything for a chance at living. We have been lucky. If it weren't for sick time donations, we'd be burning through our life savings and I can't imagine where we'd be with no insurance.
Yes, it's all a crap shoot. I thought I was dealt my hand and thought my bad luck was over, but I got dealt another shitty hand. Oh well. Shuffle the deck and try again. I guess that's why I don't gamble.
My only experience with "self pay" if you can call it that is this: Recently I had some therapy done at another hospital by a new provider. I checked my insurance and they said it was covered. I later got a bill and when I called the hospital they said insurance denied it and they gave me a break on the charges. I said it should have been covered so I appealed. I had them put a hold on the bill during the appeal. But it went to a collection agency and I got a call from them every month. I asked my provider for help and the nurse helped a little at first, but only at my urging. The insurance denied my appeal, and when kept bugging my nurse, she went to bat for me and talked to the director of PT and the hospital agreed to pay it all. Probably because it was recommended treatment by a provider and insurance had told me it was covered. I think they should have checked first too, but they didn't. The charges were about $3k and they wanted me to pay about $900. The only other time we had problems was when our insurance company balked at paying for John's PET scan and that took some phone calls. It was VERY stressful. I can't imagine having to worry about every single doctor visit. That is my only experience with that type of a situation. I'm sorry, I know it's not much help.
Is there any way you can sign up for a private plan with a lower deductible, just so you have coverage?
There are organizations that help with finances or so I've heard. I've also heard through other survivors who can't afford the "affordable" health care plans and the rising monthly premiums, that there plans formed by Christians who together help pay other fellow Christian's medical bills. I will try to get more info for you.
Personally, I think you should sue the radiologist.
M
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Eve, I was so dang disappointed in getting Diane's fb post that mentioned your post here. It made me so sad to read your posts. I went to a yoga class and devoted my practice to you and another your friend who had an MRI yesterday because her tumor markers were up.
Like Diane said, I think the most important thing is for you to find a doctor that you trust and have confidence in to agree on the best protocol going forward. Shop around until you find the right one. Tamoxifen is not an AI and it actually promotes bones strength which my be an option for you if you can live with the other side effects...there are pros and cons to everything. Right? It wasn't right for me so I switched to Femara which was even worse. I started aromasin today. We will see. My mom tolerated it well but in the end it did not work for her.
I also wanted to let you know that rads for me was doable. Did I get terribly fatigued, yes? But it was a piece of cake next to chemo. My skin held up very well and has healed up so nicely that my PS can barely tell the difference. I tell you all this because you know I am the kind of gal that elected to throw the book at my cancer after several opinions and a lot of faith in my MO. It hasn't been a perfect recovery but not some of the horror stories I have read about frequently on bco. Before you say no to any further treatment I thought my story might be useful.
Thinking of you...and all the girls here....as we approach another new year. Wishing us all peace....
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Eve- I am so sad to hear your news. And angry! I wouldn't wish cancer on my worst enemy, but I hate, hate, hate hearing about those who have fought this awful battle -and won,only to hear it is back. It scares the hell out of me and it makes living kind of like waiting for the other shoe to drop. I have learned that there is no definitive end to this journey. You try to tell yourself that it is over- you fought it and won, but every strange twitch or pain or cough brings the fear right back.
I have a great year ahead of me - my youngest son is getting married in June, and I am getting 2 new granddaughters- one in Mar and the other in Jun. Will I still be NED for all that? Will I still be here and NED long enough to get to know the babies? You know I spend a lot of time traveling between grandkids, and I always leave with the fear that this visit will be my last. I know there are hundreds of thousands of people who live with the same fears every day. I am not being political here but cancer has been around a lot longer than AIDS, but "they" have reached the point that HIV is not a death sentence anymore, and people can pretty much keep it under control with a cocktail of meds every day. I don't mean to say that's an easy life, but at least they are doing something pro-active in their fight. And the drugs needed were available within what, 10 years of the first outbreak? Yet they can't find a cure for cancer? Some of the "preventatives" for cancer are as dangerous as the disease itself - or impact the quality of life dramatically.
Well, that's my rant. Re insurance - I have been very blessed. Because my husband was 100% disabled due to a Agent Orange, my health care is fully paid by the VA. During chemo, I was getting shots of Neulasta after every session. I know the cost of that one shot was over $9000 each time. I have paid less than $1000 out of pocket since diagnosed over 2 years ago. Now the VA picks up,whatever Medicare doesn't cover.
Wishing you the best of luck in getting through this yet again. Sending hugs and prayers your way,
Anne
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Thanks guys...
Mary, my BS found the lump during an exam for a papilloma that I found in the nipple. She sent me for the MRI. The radiologist missed the tumor and his report said I was all clear. My BS is hyper vigilant with me because my BC experience has been weird from the get go. Anyhow she found the lit up tumor on the MRI. Thank goodness. My BS is going to send a scathing letter to the radiologist and I mentioned to her that I am not a suing kind of person I thought I'd look into it. She didn't say yay or nay...sooooo we'll see.
The insurance situation is by choice. I am not complaining about not having it just that it is so damn expensive and by the time you have your deductible taken care of...you could have paid less with self pay. listen guys, we aren't poor, not rich either or we would have insurance...we don't have a lot of debt...older car...you know we live with in our means. An extra $21000 a year out of pocket whether we use it or not for ins is over our heads. I just don't want you all to think I am whining about not having insurance. I have heard about the Christian health ministry's...but I don't consider my self a Christian per say so I think it would be hypocritical to go there.
I am still stage 1. Doc said local reoccurrence happens in only 3% of breast cancers. Plus she said I still have the low rate for metastatic cancer. The little bugger was 3mm and she got clean margins. It was right under the skin so that is good also......gotta find the good.
Yes I PROMISE I will listen to the MO and RO...My best friend will go with me...she is the kick ass person long before I"d pull the trigger...no worries on that. She is even more stubborn than I am and way more skeptical. But asks the right questions.
So off to do my research! sigh again lol
love ya!
Eve
hey if there are any words with out an "L" my "L" key is being awfully persnickety today..
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Eve I hope what I said didn't offend you in anyway!!!!! I was just thinking personally that I could not do it if it wasn't for insurance. I'm not poor but definitely live paycheck to paycheck and in between we do struggle at times. I could never pay out of pocket.
I worry about being out of work for health issues and not get paid because I know my family needs the money for groceries, bills etc.
I am truly apologetic if what I said came across wrong. I was responding more on a personal note. Also the cancer center in my area is not religious. I couldn't get help from them however because my cancer was not invasive. Every place the social worker contacted said it had to be invasive cancer, chemo or radiation needed to be part of treatment etc. let me just say that was a slap in The face! I had breast cancer, had bilateral mastectomy and then told I wasn't worthy of their assistance. But I know they helped other people that is y I mentioned to you. Your cancer wasinvasice...I really hope nothing I said offended you, Eve. If it did, please accept my apology!
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Eve, sorry to get caught up in the insurance discussion. That sure is a high deductible and I can see your point.
I'm glad it's stage 1. That's awesome!!!! Yes, focus on the good. So glad you have your best friend in your corner.
Love,
M
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Oh for heavens sake my dears,
First of all....NO APOLOGIES EVAH!! Not here...got it!!
Beverly, you didn't say anything that was offensive, nothing. I really get the paycheck to paycheck thing. I think more people do than not anymore.
I never get offended, I like honest answers and opinions....you all make me THINK! you get me out of my comfort zone...so I look at everyone's point of view. I LIVE for that!!
My sons and I are the great debaters...my BFF and I debate issues all the time. I love differing point of views and the more information and personal experiences I can be privy too the better.
Mary as far as the insurance thing...it is a thorn in my side. Of course I would love to have insurance..and to actually use it. I am just interested in how you al navigate the insurance system. So much has changed in recent years that it just doesn't seem to work well for people like me that fall into the" make too much money for the ACA and not enough for private abyss". It's crazy. Hubby received a wonderful bonus this Christmas that would have paid for ins and deductible. He asked me if I wanted the insurance or should we put it towards a down payment on the land and house we want to buy. I WANT my gardens...my chickens, alpacas..lol....this was before the surgery. I opted for saving it...This surgery wasn't gonna be covered anyway.
Anyhow,
I am always interested in everyone's thoughts and opinions. Keep 'em coming.
peace
Eve
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