DIEP 2013

FierceBluebird

Hello ladies. Just wanted to pop by and let you know that I haven't forgotten about any of you, I'm just not in a good place at the moment and didn't want to scare off any of the newcomers. 

Several people have mentioned havng a weird chestbone type pain. I did want to mention that I've had Tietze Syndrome for years; basically the rib cartiledge becomes inflamed (not the same as costrochondritis) and it can be quite painful. It comes and goes, not always in the same place and can be aggravated by surgery. Just wanted to mention it. Google it for more information. Most doctors are not familiar with it.

My heart goes out to those of you also struggling. I'm still trying to convince myself that this will all be worth it someday, but right now I wish I never had this surgery.  When I read about those of you who have come so far and are doing well and riding bikes and hiking and getting back into life, I just break down.  It's so hard right now because I'm back to square one. Actually less than square one. Whatever negative square one is.

But I'm happy for everyone who is out enjoying the beautiful weather. I'm determinded to get to a place where I can be accepting of myself and back to kind and and gentle thoughts.  I will be getting some second opinions and I'm trying not to be bitter over the treatment I recieved by my plastic surgeon's office. They continue to be horrid. Last week they refused to sign my husband's request for family leave act. He's used every vacation day driving me to and from appointments and surgery and hospital stays in Philadelphia and has no days left to take. Now that I am starting over again, he needs family leave to be able to take days off (unpaid) to get me to appointments. The nurse Nicole at Dr. Serletti's office refused to sign the paperwork saying, "She can drive herself. Just don't take any pain medicine."  What the f....!?   I haven't driven in weeks, had major surgery AGAIN (third time!) last Thursday and still have sutures and wounds.

It's pretty clear that once you become a problem or failure, they just want to sweep you under the rug. Lots of smoke and mirrors and razzle dazzle before surgery but no compassion when things go wrong. I stll like Dr. Serletti, but you can be the best surgeon in the world but without good aftercare, you still suck Wilbur's balls!

Okay, got my ugly, angry rant out for the day. Hugs to all of you if you haven't run away by now!

FierceBluebird

jlbloom,

You are a healing balm. I was writing and missed your post, but needed to hear that. Thank you.

mammalou

You ladies are amazing with your exercise. I was active before surgery; walking, biking, running. At almost 3 months out, I haven't been able to exercise, BUT I did it yesterday and today with vigorous 3 mile walks. Yea for me!

mammalou

Bluebird. I second the Wilbur tribute to your PS office. They need to be dumped for sure!

Tracy516

Heat for swollen breast! Sorry I wasn't clear. I thought ice but ps office said heat.



Bluebird (((((Here's to sucking Wilbur balls)))) dump troughs jerks!!

goldie4040

I want very much to believe this article

http://www.foxnews.com/health/2013/09/06/quality-life-often-good-post-breast-cancer/

sweetpickle

Bluebird- hugs to you and Im so sorry that you have received such horrid treatment! Please make sure to detail your experience on any yelp tyoe sites for doctors. Future patients should be able to know hiw they mightbe treated and if word gets back to the doctor, maybe his staff will start treating patients better. Hoping things brigten up for you soon.



Movie- Im still sore from stage one, sixteen weeks ago I think, does stage two make you more sore? Hope your recovery is speedy and trouble free :-)

Judy_63

Bluebird, did the nurse talked it over with the Dr about your husbands FMLA or was it just her that didn't want to be bothered with it? I know with my FMLA I had to have the Dr sign the form. If the Dr hasn't been talked to about it I would go to him directly and get the paper work signed.

goldie4040

Bluebird,

If my husband could get family leave when his mom was sick, your husband should certainly get it for you.  If I remember correctly, that will be unpaid leave since it's not for the person taking themselves, but at least it would give him job security. 

sbelizabeth

Bluebird, Aubrey was wearing a dress on Sunday that had tiny bluebirds embroidered on it, and I thought of you all day.

Dear sister, it's just not fair that you're struggling through this wretchedness, while some of us have recovered well.  Maybe it's like the question all of us have asked--why are other women sailing through their lives, and I was slapped with this breast cancer?  And for me--why, after watching my diet, exercising, being careful with yearly mammograms, did I pop up with Stage III cancer?  There are just no great answers to these questions.  I have a deep and personal faith in a loving God, and I don't believe he was asleep at the wheel and let breast cancer sneak up on me, but I just can't tell you the answers to these questions. 

But this is me, laying healing hands on your poor body from a continent away, and praying for your recovery and peace.

Also...it is illegal to deny your husband time off to care for you, according to the Family Medical Leave Act.  Speak directly to your doctor, not the witless twit of a nurse, and if the doctor balks, talk to your husband's human resources department.  Raise a big stink.

Can you feel it?  I'm hugging you right now.  Katy

sbelizabeth

Mammalou!  Three miles, and in this heat!  You go, girlfriend!

Femara is a blessing to me, since it wrings out all the gasoline that fuels the embers of my cancer, but dang...the lack of estrogen has made my knees like creaking, rusty hinges.  You walk and I'll ride right beside you, ok?

Anonymous

Bluebird....first of all, thank you for the update. You are on my mind every day.



I was just looking back on your posts to see if you are getting in home care....visiting nurse or anything?...can you let me know? It is germane to the FMLA issue and I will send you proper links to the right part of the law to make sure you let that bloody nurse know your DH is entitled to the leave (he is entitled either way, but if you have home care it is super clear).



Assholes.



I have 20 years of solid FMLA administration under my belt, honey, and I will do everything I can to help you get that part of things taken care of. You can't make a doctor fill out the forms, they are under no legal requirement to do so, unfortunately. But I am happy to help you push them (off a cliff...perhaps???)(Just a suggestion).



Also, as I was looking back on your posts I came across this.. "Life doesn't always prepare you for what's around the corner, but being flexible and adaptable will!" Hmmmm.....who said that???



Your body is beat up....be strong in your soul...and don't forget, you are on the wings of your flapper friends.



How are the chickens?

hrf

Bailey, thanks for the reminder about the week 3 slump. I hadn't heard of that before. It is reassuring.



Bluebird, I have been thinking about you a lot. I am so sorry that this has not gone well for you and on top of it, the people in your doctor's office are idiots. Will you be looking for a new PS?

Moviemaniac

Bluebird....I do believe my BP just spiked reading your post.........I am feeling the need to hurt something,(or someone >>coughNicolecough<<)
<br />

You are on my mind everyday (in fact, I believe that you -and Robin, and all of our sisters in pain and suffering-are a constant in our hearts and minds) and what I hope and wish for all of you is that you will come to a place of acceptance, and be able to move onto another option.....as Sbe said, none of this makes ANY sense.......but we have to start from wherever we are.....even if it is negative one....



Maybe you should connect with Bailey and let her help you........I sense that there has been some patient neglect here, as well.......regardless of whether you like your PS, he is only as good as his staff......and they sound......well......shitty.



Still having a few Braxton-Hicks today, but have been on a walk, and have had two naps......Wilbur is beckoning. From my awesome recliner..........laters..... XO

FierceBluebird

Katy, meant to comment on adorable Aubrey! Thanks for encouragement.



Bailey, words do have power and sometimes come back to bite in the a$$! I'm pretty fresh out of flexible and my adaptable has run away with my patience too. Ha! I'm about as grumpy and curmudgeonly as humanly possible these days. Ready to go live under an overpass and shout obscenities at cars. Uh-oh, what was that about words having power? I better be careful making co.ments about living under overpasses!

I am under home nursing care. Despite my grumpiness and threats of obscenities today, I really am a kind and gentle soul. Never complained at doctors office. I just don't understand their lack of compassion. Love you guys to pieces.

Cherrie

Oh Bluebird my heart and prayers go out to you. It made me angry to hear how you were treated after everything you have been through. What dinks! Hope for better days ahead and that some of this can be resolved. You may need to consider a new medical team. 🙏🙏🙏

Anonymous

Ha! Bluebird...they do bite us in the a## my friend, they do.



Being a kind and gentle soul, as I've no doubt you are, is a good, good thing, friend. You have to be (or DH has to be) your own best and STRONG advocate here. Nobody else will do it for you. This is your body, your life, your well being...you can be strong and firm and kind all at the same time.



Go to this page http://www.dol.gov/whd/fmla/ and scroll down the page to the fact sheet section. Print Fact Sheet #28F Qualifying Reasons for FMLA Leave, go to page two, section "To care for employee's spouse....who has a serious health condition"....the two bullets under that cover you completely...one for transportation, the other for providing psychological comfort and reassurance. Send it to her and tell her you need both from DH. Or have DH call her, for that matter. Or DH' s HR person, but only if DH thinks HR person is "on his side". If he thinks employer or HR is wishing he couldn't take more time then don't get the HR person involved with the doctor's office (I don't like to rip on my HR peers, but they don't always see things the employee's way, ya know?)



I will get the section of the law for you later...just in c as....running to sister's house for drinks and fire!



And lol...am now imagining little troll like bluebirds...Lol...you've earned getting your grump on, sweetie.

christina0001

lahela, it's never a bad time for champagne. Let us know how it goes.

bailey and nihahi thanks for the moisturizer tips. I use Oil of Olay facial moisturizer too and I will try that, it seems like a very gentle moisturizer. If that doesn't work I may try what nihahi recommends.

(((bluebird))) So glad you checked in. You have been on my mind. ditto everyone else about that nurse, what a witch. What is wrong with people?

Well I went to JCPenney's and bought a couple new dresses for work and some support undergarments so I don't have to wear my abdominal binder to work so much. (Goldie I tried wearing it under my clothes and that worked well with some of my tops, but it felt kind of bulky.) While in the dressing room I got trapped in some Spanx and for a moment wondered if I would have to call 911 because it did not seem like I would be able to get out... boy those things are tight. I bought a couple of Maidenform brand support garments, we'll see how that goes.

Moviemaniac

Sbe-did you receive a PM from me? I tried to send you one......re info for essential oil.

MartyJ

Bluebird - you are a spunky gal!  I would love to join you under the bridge shouting obscenities at cars.  What fun!  A great way to get rid of all those aggressive thoughts you are having right now.  And you are so entitled to them.

Christina - I was trying to put on a workout top with builtin support one day while my DH was on the golf course.  I got stuck.  911 did come to mind, but thankfully there was a nearby pair of scissors and I cut myself out.

sbelizabeth

Yes, Movie, thanks so much!  I love playing with essential oils, but never heard of one that can soothe aches and pains.  I'll be ordering some today.

Christine, I laughed a big one at the image of you trapped in Spanx in the dressing room.  They're pretty claustrophobic for me.  I'm trying to find something that works well and doesn't make me want to rip them off screaming.  Maidenform Control It seems pretty compressive, but not painful.

Bailey, you're just the best.  Thanks for helping Bluebird in a way that no one else can!  And Bluebird, we all feel like mamma bears protecting their cub.  Whatever you need, if we can help, we're there. 

Crap.  Notre Dame just scored. 

goldie4040

LMAOOOOO Marty.  I don't know why that struck me as so funny.  Your poor top cut up with a scissor! 

Christina, I should have told you I always by Spanx a size or two too big.  They are really tight.

Bluebird, I am a member of another support group on Facebook, and one of the women started a string that said something like, "if you could curse cancer away what would you say?" It was hysterical. All these women who are usually very sweet, kind and nurturing all cursing cancer out.  It went on all day. Very therapeutic.

liefie

Bluebird, just wanted to say hi to you. You have every right to be vey upset - I simply cannot believe the callousness of these people. One would expect exactly the opposite, namely sympathy and compassion, if something like that happens to one of your patients, and that they would try to assist you in any way they can. This is just unacceptable, and they need to be told. I am really glad Bailey is helping you. Give 'em hell!

Christina and Marty, I had a similar experience not too long ago when I bought some medium Genie bra's from WalMart. Got one on, and it was way too small. Struggled for a good while to get out of that tightfitting, claustrophobic thing. I think the large size will still be too small for my 34B size. First time in my life that I will wear a large or extra large bra - LOL.

mrtw43

I'm behind a few days and I am sure I missed many posts. But I was just reading about the exercise some of you are doing and I am thinking to myself, is there something wrong with me? I am on my 4th week out and I am only walking a few blocks for exercise. That doesn't mean that I am just sitting around on my butt for the rest of the day but I am nowhere near walking/jogging 5k or biking miles. How are you gals doing it?



Thanks for the idea for the spanx sizing, I am tired of wearing the compression binder, but I always thought the spanx were too tight, it didn't occure to me to go bigger (let's face what woman says while clothing shopping....yeah, I want it in a bigger size).

Goodie

Bluebird you are often in my thoughts and prayers and all those going through even rougher times in this mess we are also going through.  All of us want an easy solution in our bc journey for something we are going through.  But we all got the crappy one when our mammograms, tests, etc. came back with the "problem" and we are praying for the best outcome from each test, procedure etc. all the time  That nurse you are dealing with is so clueless and horrible to be in her job.  Really???  We need compassionate and understanding nurses to help us through.  I do feel very blessed with many of my nurses and office staff in the past two years and I avoid the negative nasty ones if I can. I hope Bailey can help you too!  There's something just not right there.

Movie - what is the essential oil? 

mrtw43

Bluebird, I am sorry to hear what you are going though, it breaks my heart. Please take care of youself.

christina0001

LOL @ Marty That is hysterical! sbelizabeth I think you are right, I think I should have just tried the next size up.

Morningsun1

Pages and pages to catch up with one busy day.

(((Bluebird))), so glad to see your fighting spirt is starting to wake up. I agree with others, you deserve better care than what you got from the current treatment team.

Barbmal, I am #191, want to join me? Weather here in Pittsburgh was beautiful today, and it will be the same tomorrow, 54 to 76 and dry. Perfect for a run. Have good ones, Wilbur's flappers.

Tracy516

If I could course cancer away, what would I say?

Take your shit and vacate my tit!!!!!

Jeannie57

Gotcha, was it you who mentioned Gabapentin SEVERAL pages back?...whew, hard to keep up. I've been taking it for chronic neck pain and it works for me with the added benefit of sleep. I always get my liver checked via bloodwork every year just to make sure the G. hasn't harmed it, but heck, I guess we're all getting our livers checked now anyway.The chemo actually had anti-inflammatory benefits for me (methotrexate), so my neck has been feeling pretty good. Maybe I'll try a Gabapentin break.



Bluebird! How often I have thought of you and prayed for you! If we all lived closer to you, I'm sure we would all go marching in to your PS's office as an army and do your fighting for you! The PS needs to know what his nurse told you. Loved the Wilbur comment! That Wilbur, he comes in handy. Even though I haven't had the problems you have, I do wonder sometimes why I am putting myself through all this, the pain, the discomfort, poor sleep, scars, lumps, hated IVs, etc. Then I remind myself that I had body parts amputated and I want to replace them and feel kind of normal again. I have to believe there is hope for you to have that, too, again, after physical and emotional healing have taken place, if that's what you want. Others have said it better than me, but we do really care about you and wish we could help. Glad you have Bailey in your corner! By the way, my daughter took family leave to come take care of me after DIEP. My husband had just started a new job a few months prior and didn't have much time off. She works at U. of Michigan. Go Blue!!!



Thinking of Faith and Robin, too.



Sbel, my daughter lives in Escondido, which is north of San Diego and inland. It was 119 F at 10 AM according to her outside thermometer. She said she was in hell.....those are Death Valley temps, for sure. No bike riding in that!



Mrtw43, there is nothing wrong with you! Everybody heals at their own pace and it's important to pay attention to how you feel. I'm sure you are right where you should be. I diligently walked as soon as I could, even if it was laps around the house, but I am no athlete. I like to take walks and ride my bike, do the elliptical sometimes, hike a little. Steady progress. Exercise has taken on more importance for me since bc.



I realized again today that I live in a beautiful part of the world! I took a 7+ mile bike ride in West Seattle, which is surrounded by the Puget Sound. You can ride by the water for miles and miles with views of the Seattle skyline, cruise ships, ferries, Olympic Mts. Gorgeous! The air is fresh and lucky for me, it's mostly flat paths......no falls, despite bringing tons of first-aid supplies! I never knew how painful road rash could be, a week later.



Christina, I laughed at your story! I wear Maidenform, too, since DIEP. I just remembered that when I was visiting my mom in May, she wanted to try on " slimming garments" so we went to Walmart. After helping her try on different sizes she ended up with a snap-crotch version, which I didn't even realize. We were at her sister's memorial reception and I helped her find the bathroom. I was soon needed as there was no way my 87 year old mom could bend over and fasten that crotch. As I fumbled around down there, we had a good laugh which was what we both needed.



Welcome, Glenny! (I hope I got the name right) You have joined a group of wonderful women!!!



I'm thinking of all the women having surgeries this coming week ----- Ssla01, Cstrong, Zoemom, mtpeteacher, Katita. May you find peace and calm moments both before and after, and good healing!! Wilbur will be there. Towanda!