Great saying about depression
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"don't give up on people" I like that better than "if people continue to disappoint you, lower your expectations!" hehehehehehe
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Barbe, I am smiling because my DH always tells me to lower my expectations! But i tend to live at a more hopeful place, and "when" not "if" I'm disappointed I just have a good cry!! Maybe that is why it works, I am more emotional and he is steady--so there is a balance.
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Lindsey- Thank you! I would love to read your blog. I was just reading about the whole wordpress thing and wish I had known about it back when I was DX. Not sure what I would write about now that I'm "done" (or supposed to be done....or whatever). Though I am feeling a bit "Humpty Dumpty" since I don't feel quite put back together yet. I have my appointment tomorrow with the new PS. Hoping she has some words of wisdom for me. Let me know the address of your blog if you get a chance!
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Hey Ladies!! I survived!! and for the record it was 11 women in one RV. Fortunately Friday night was only 5 of us and it was perfect. We had a lovely dinner ocean side and headed to a club to see out favorite local band...the super sexy (in a dirty bad boy kind of way) lead singer sang to me...
then gave me a high five and went back on stage. The bachelorette was quite jealous as she was trying to get his attention to get pulled on stage.. HA HA New boobs trump tall blond! Saturday I ended up staying at the RV which was no ordinary RV and I shouldve guessed as much. It was like a giant tour bus. The bathroom was a full fledge shower stall and everything. I just took my shower while all the girls went to the beach so I was all ready for cocktails while the remaining (now 10 other) girls got ready. It was so chaotic and it still stuns me how long it takes some women to get ready. But overall we had a really good time and it felt really good to just laugh and dance all weekend. Lots of fun and it was beautiful weather making it just perfect. Lindsey I like the idea of a wish list. That is a great tip. When I needed help I just sent out emails and eventually someone responded.
Kate good luck at you PS appt tomorrow. I hope its nothing serious or that requires more surgery. Keep us posted...will be thinking of you!
Have a good night...I am still recovering so off to bed early tonight.
Hope everyone is good today!
Diane
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Diane- Your girl's weekend sounds like such a blast! Glad you had a great time and that you caught the eye of the lead singer- LOL! Such an ego boost!
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Diane--Sounds like you had a fantastic time this weekend. How sweet it is to have time with friends that can make you laugh and have fun and not think about BC!!! Wish we could live everyday like that!!
Kate-(((((((((((((HUGS)))))))))))))))))) I hope your doc appt goes well today, that you get the relief you need and deserve. Let us know what you find out
I have my 3 month c/u with my MO today. Can't get too excited--these visits seem like drive bys. Post treatment there's not a whole lot to talk about. Guess I am lucky I don't have an"issue" to bring to the table--although I do HATE tamox. But not enough to quit--prefer the odds of not getting cancer again with the med. Figure I would already be having the hot flashes with menopause anyway.
Lindsey and Kate-your surgery sagas are making me question my future recon. My MO won't let me even START the process till a year after my final rads date(april 11-so I will be waiting till april 2012) I think the worst part is knowing that this whole BC experience will be dragged on and on and on. Oh well, cross that bridge NEXT year!!
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Lindsey: They have a free Mindfullness Meditation class at UCLA in the alternative oncology dept--I think it's called the Simonson Center. Worth going to. There is a CD I listened to for surgery--I am out of town but when I get back I will get you the details.
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BTW: Lovely post and response to Kate's post.
Kate: Sorry to hear there are still problems with the implant-the fat should eliminate capsular contraction-maybe the pocket isn't tight enough? Hope there is an easy fix and a solution for you. I am so in the same place with my friends-I can't seem to do small talk anymore-I want so much more depth from my friendships and I find so many of them lacking. Mostly I just think everyone gets so busy with their own lives they no longer know how to connect on a deeper level. We have changed and they have remained the same. I have to say-I do now have deeper friendships with women who were not in my life before-just aquaintences. One of them lost her mother to ovarian cancer during my treatments and we really bonded and I am truly grateful to have such a friendship-the others pale in comparison.
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Diane: What a blast your bachlorette weekend was! Love the "breasts trump tall blonde" quote. LOL!!!
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ARRRGGGHH. I am such a wuss. Tell my MO I don't like my port and would love it out. She just smiled and I didn't pursue it. I just don't have the guts to stand up for myself. Three months ago she said she might talk about it sometime in the fall,but she is in no hurry. To me its not a safety net, its a reminder. Kinda think those two long scars on my chest are enough of a reminder. I am just so mad at myself. AAARRGGHH.
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Claire, is she seeing something in YOU that doesn't really want it out?? You told US you wanted it out so why would she ignore that?
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Claire so sorry your recon is dragged out so long. Thats why your onc isnt going to take your port out now, they usually take it out while your under during recon. I hear ya about extending the bc experience. That was one thing that left me so distraught after I found out I had to do chemo and exchange surgery was postponed 4 months. I cried so hard. I wish at the beginning of everything docs would just tell you upfront this is gonna be a two year experience for you then I could have processed it then instead of feeling like I was on a roller coaster with good news...bad news..good new...bad news..it sucked!! It is for your best that they not remove it now as your immune system is probably low and they dont wanna run the risk of infection. Remember you DO NOT want an infection in your skin that would really set back recon. Unfortunately sometimes Docs know best.
OK There was a FREAKING earthquake!!!! My building was shaking and felt like it was going to crumble. We thought it was an explosion as we have many federal agencies in our building. Being 13 floors up...I was like I AM LEAVING. I grabbed my computer, my purse, and ran out of the building to my car. I drove to doggie daycare got my puppy and drove home like a maniac through the City to avoid the Fort McHenry Tunnel. Thank god I left when I did traffic is terrible now. I know CA girls you think we east coast gals are wussy but I have never been so scared.
Ooohhh anticipating aftershocks...so scared. I hate this and then Sunday Hurricane Irene is hitting Chesapeake which always means major flooding in Baltimore City as the Inner Harbor is sure to overflow. I gotta head to Home Depot for supplies...UGH. Thankfully i had my tree people out today to cut back my 100 year old Maple that was resting on my roof! Uhh Thank GOD they came out first thing this morning. Ok my rant for the day!
Hope everyone is safe and sound tonight.
Diane
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Diane -- I live in California and do not think you are a wuss ! Your earthquake was almost 6.0 -- that's a BIGGIE !! So scary ! I am glad you are OK and that you got your pup out of day care and are home. Can't believe you have to deal with a hurricane next.
I am home on a lunch break so have to run...I'm on week 3 of being back at work and I am finally finally finally feeling more "normal". Less fatigue and soreness. The last 2 weeks nearly killed me off. (At least felt that way.)
Hugs to everyone on the thread !!
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That earthquake was felt in Northeastern PA!
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Well, appointment with the PS today was a bit of a let down. It was pretty much a waste of time. Not impressed with her at all- she seemed pretty apathetic. She didn't feel my issues warranted an MRI. She thinks I might possibly (possibly?) have some scar tissue that has formed that is pulling on the implant on the left when I use my arm. She wrote a Rx for US and PT. She said there was nothing permanent she could do to relieve the tightness of the pec muscles. She said I could try Botox into the pecs but there was a risk of implant rupture. (Then why the hell even bring it up?!?) She basically said "It is what it is" after TE/implants. She also poo-poo'd the whole "total breast recon with fat grafting" because there was a chance of calcification which could scare a previous BC patient. WTH? Let's see- give a woman the option of creating an entire breast with just her own fat or permanently trash her pectoral muscles so we can jam some silicone in her chest! I think I would have picked the calcification scare personally, had anyone have given me the choice- which they didn't!!! I was told my only option was no recon or TE/implants. (Said I was too thin for the flap surgeries.) I already have the daily pain of fibro and am so depressed thinking I am going to have lifelong pec pain on top of it. Maybe it would have helped if she at least acted like she cared. Sorry, I'm just so tired of all this $***. I feel like every time I fix one thing I create a new problem somewhere else. I just want my normal back.
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Kate33: Sorry for your miserable experience with the PS. It makes me wonder why some people enter the medical profession. You deserve better.
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Kate -- So sorry for the crappy experience at PS office. It is awful when it feels like a doctor is not taking your concerns seriously or offering any solutions. You would think a woman PS would be more empathetic, too, for Pete's sake !
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Kate I am so sorry things didnt go as you had hoped. Maybe the pain is cording. I had some cording a year after my mx. I went to an LE therapist for evaluation. I was signed up for some PT BUT after a revision surgery it corrected itself. My PS said (prior to surgery) that it was a tendon stuck on scar tissue and OMG it hurt it was uncomfortable and it felt like it was going to tear my muscles. Maybe thats all it is and it can be worked out with PT. I don't understand if you have implants with FG now why you would need TEs and Implants?? Im confused is she suggesting you start over and take all the FG and current implants out?? Why would you need TEs?
I feel so lucky to have a PS that is so sweet and does everything he can to keep mama happy. I always find male physicians to be more sympathetic to what we go through than women. Sorry but thats been my experience.
Chin up Kate I would just get another opinion. There has to be someone out there who can give you a solution that makes you happy.
Hugs to you!
Diane
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OMG Kate, what is it with these insensitive ps? It is so frustrating to be in pain and then not be offered some solutions. My head is spinning for you!
You are all welcome to read my blog. Yesterday was my best post yet. Pulled me out of a downward slope by the time I got done typing. I needed that because I didn't realize I was slipping into depression until I started writing. I just don't want my site to be public, so for your viewing eyes only! :-) wolfwail.wordpress.com
I need some quick help. Remember I switched ps and I have a pre op appt tomorrow for a Sept 6 surgery. He will swap out the too tall expanders for a short half moon style, rotate my nipples a little further north and take out lots of scar tissue under my arms.
Learned today that the exchange surgery he is proposing in Nov would NOT include FG and the coordinator called today to say it would be $8,000 for the lipo of the belly and FG next March. We can't afford this after paying him $10K tomorrow for the revision and exchange. Ugh!!!!!
Question: has anyone had TEs with a swap to implants that did NOT require FG? I just want to know if this is possible before I ask the ps to change his plan. If so, do you have a description of the TE (tall, medium, short--and this is height not projection).
I don't want to start with this great ps if we can't finish with him and I end up with this big shelf.
I feel pushed to the wall and appreciate anyone's experience or insights!
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kate: can you send copies of the us to the miami bresat center, with an expl. of whats' going on? maybe they'll have an idea. they did such a good job.. maybe it happens enough so they'd know.. its worth a try???.......3jays
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Lindsey: What hospital/PS did you have before? I went to USC Norris and they did the FG for free.
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3jays has a good point Kate. Have you even let them know you're having problems?
Diane, I didn't realize Claire was still undergoing reconstruction. Of course it's prudent to keep the port in, but why couldn't the doctor just say that? Doi!
MBJ, how IS your nose doing? Black eye gone by now I hope, but how are you feeling?
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Lindsey- I think a lot of women do the TE/implant thing without FG and end up really happy. Have you checked out the thread "BREAST IMPLANT SIZING 101"? There's a member on there called 'whippetmom" who is our resident implant expert. She knows the best types of TE's/implants for us and makes recommendations. She has helped hundreds of women on here.
3jays- I do plan on forwarding everything to Dr. Khouri. The PS wasn't ordering the US but said it would be done at the PT facility so I'll be asking them to send everything to him.
barbe- I've been in email contact with Dr. K throughout all this. I sent him recent photos and he said everything looks fine so that is why he suggested the MRI. PS yesterday didn't think it was warranted, though. Dr. K would definitely be helping me but it just isn't feasible to get to Miami right now. Dowside of out of town surgery.
I've feeling better after my disapoointing appointment yesterday. Just can't believe someone wants to be a specialist in the field and then be so completely ignorant as that PS was. She actually told me I couldn't have LE after an SNB which I know isn't true. And when I told her I wanted a referral for an LE evaluation she didn't even know where to send me. The funny thing is one of the best clinics is literally 3 minutes from her office! And when I requested they take my BP in my leg (as an LE precaution) the NP didn't even know how to do it! This is a PS's office that specializes in breast recon! She also didn't have accurate knowledge of FG. It always amazes me how so many people care so little about being good at their jobs. Anyway, my plan today is to schedule my PT and LE evaluation. Hopefully, they can get me in quickly!
I'm off to put on my Kevlar suit! It's supposed to be 116* here today!!! Gasp!
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You can get LE just because you've messsed around in the lymph area! What an idiot! AND it can occur up to 20 years later! I HATE when 'specialists' are uneducated!!!
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barbe- My pet peeve, too. I'm always amazed that crappy people manage to keep their jobs. I swear we're a society of mediocrity for the most part!
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Kate--I am not looking forward going thru what you are going thru. I have no patience so I wonder if surgery after surgery is the way I want to go. I haven't come to accept my concave chest, I really admire women who are strong enough to deal with it. I'm not, just too insecure. Mixed emotions.
Sorry, you know how some days the words just don't come out right?
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Claire- It definitely hasn't been easy for me to hand over my body time and time again. I kind of have to go to another place to get through it. I think my fibromyalgia makes me hypersensitive, though, to anything that doesn't feel right in my body. It can be something as simple as a tag on the back of a shirt. Or lights that are too bright. Or noises that are too loud. It's like my brain isn't capable of shutting out the message that something isn't right. It's absolutely maddening. But feeling like I've got an alien in my chest is so much worse than anything I've ever felt. I just keep thinking there is a solution out there. I'm happy with the way they look (well, as happy as any of us can be) but it's how they feel. I feel like something has a grip on me and won't let me go. So I keep searching out new solutions I guess. I definitely think the fat grafting improved things aesthetically. Just need something to fix the physical sensations now. I refuse to give up!!!!
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Damn It I lost my post!!
Anyhow, here I go again....
Lindsey I had no FG ...TEs were Natrelle 133MX 800ccs filled to capacity..implants Natrelle 20-600 (round High) I have no rippling no shelf drop off thing. The only thing I hate is in my armpit I have a divot. PS says too close to implant for FG but may soften or drop and can try FG later.
Kate I hope you got your LE evaluation scheduled. I found those nurses to be quite helpful and I am sure they can give you some solutions. You should absolutely NOT give up. You have to feel comfortable. You can not be in pain and discomfort for ever that is not reasonable. You can fly to Baltimore and stay with Me Charlie and Sadie and see my gorgeous talented PS. He is not pricey and does primarily recon, He is highly regarded and very very very kind.
If anyone needs a chocolate pick me up I will share a tip...if you get Godiva's frequent shopper card..you get a FREE CHOCOLATE every month..its right up there with paying my mortgage!! I never miss a month. something about FREE that makes the chocolate even tastier!
I hope everyone has a good tomorrow.
Diane
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ohhh free choclate.. now thats' a helpful hint, Diane!! hang in there, girls. i had no choice but to for go on recon, bc of my poor health bf bc.. but i totally want you guys to not just look good, but feel good, as well.. keep on fighting!!!!.........3jays
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3jays I feel the same way! I didn't do recon for health reasons, FM was a big part of it, but also pray that the ladies who had the guts to do it can at least get stellar results!!! All that extra pain has to be worth something!!
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