2012 sisters

jpmomof3

Hey ladies,



It's been a while since I posted last. It is still a little weird to call myself a survivor but I qualify. 3 weeks from last rads, three months since last surgery, 20 weeks since last chemo. Things are more normal. Not back to the way I was of course. Cancer isn't quite as time consuming for me but it is still on my mind. I measure my arm for signs of lymphedema every day. No sign yet, fingers crossed. I am taking tamoxifen as of Friday. No side effects yet after three doses. Fingers crossed. Waiting for the hair to thin out on that stuff. Waiting for hot flashes if they are coming. Good bye estrogen my old friend. It was nice knowing you, or not. Maybe estrogen tried to kill me. My skin is all healed from rads. Lets hope this all worked.



I am running four miles a day. I am chasing after my kids all day. Working. Life. Watching my hair grow in wavy and somewhat grayer than before... This is what I fought nine months for. I am glad to be done with the active stuff. Really glad.



I have a lot to catch up on. Love.

lisa2012

Gosh, haven't been here for a while, back at work, busy, ups and down emotionally as I guess I become a survivor- for now- hard to understand, really. But it's great to see you all-and the new thread will be fun. I'm just dealing with getting on an AI that isn't too annoying right now. And my hair- plentiful, curly, and about an inch long.... still wigging it, and my eyebrows (that mostly fell out about 6 weeks AFTER my last chemo, grrr) and such. And PT for pre-frozen shoulder. sigh... but here we are at Thanksgiving!

liefie

Jpmomof3, I have been wondering about you lately, but I assumed that you were getting on with living, and putting your life back together. So glad to hear you are doing so well! There is life after this after all. I just feel so sorry for all of you with young children having to battle this cruel disease. It was hard enough for me, and my children are all grown and gone.

Juneau, I will certainly join the new thread. What a great idea. Thanks!

Jenlex, yay on finishing rads tomorrow! A real milestone, and now you can put this ordeal behind you.

Tazzy, I'm scared I will forget to wish you a very wonderful holiday across the pond, so this is a bit early. You so deserve it after this 'annus horriblis', so enjoy every moment!

Websister, I hope you are okay, and that the dark hole is beginning to lighten up a little. Only one more to endure . . . if you are like me, the last one will be a breeze compared to the others. I was anticipating all the usual SE's, but had very few during the last cycle. Don't know why - there are always more questions than answers with this thing, hey? DH sends his regards too.

McCook, so good to hear from you too. Sincerely hope that shoulder will get better, and that you will find something that will really help.

Everybody else, take care. Those in treatment, hang in there. It does end eventually.

Tazzy

JenLex :  Welcome.   You will not find a stronger, more comforting group of women here.   Feel free to jump over to the 2013 Survivor thread started by Juneau.   We have such a connection with each other that this way we can continue our friendship.  Hugs.

maryah930

Got up, got dressed, got on a plane, got to my site...first day back to work and except for short hair and no boobs, I FEEL NORMAL and GREAT.  Now, catching a flight back tonight, so I may be exhausted, but damn this feels great.

Also, I decided to go with the flat look and frankly, it feels good.    

iatigger

Maryah930, Glad to hear your first day back to work is going well. I am enjoying my last week at home before jumping back into the fire.  I actually am starting to enjoy being home, which is something I didn't think I would. Maybe the busy pace of work has just worn me down after 25 yrs.

juneaubugg

maryah930: YAY!!!! Ain't it grand?!

websister

Jenlex - adding my welcome



To all of you who are coming back and catching us up on your lives post treatment - you don't know how much it helps - thank you!



Liefie - I think I am doing pretty good after a quiet weekend, not as bad as last time. Soon #6 will be done and then it will only be Herceptin until August. I can see the end and have Christmas to look forward to and prepare for. Sending my regards back to your DH and I expect to hear that the two of you danced the night away after your niece's wedding - it's coming up quickly



Take care, everyone

MirandaSW

SO last week (which was the first week post chemo) I got sick. Congested cough, sore throat, lots of mucous, etc. I got a ZPak  friday. Started itching yesterday and had some patches of hives by last night. Woke up this morning with hives EVERYWHERE.

Can I just catch a break?? Once?
On the upside, aside from itching myself to death, I feel pretty much normal. Good thing as we are leaving for Colorado tomorrow evening.

Tazzy

Miranda:  ((((hugs)))) - yeah come on, give the girl a break.  

bevg49

Hi to all you great women... I haven't been here for awhile. I've been having a hard time mentally and physically and didn't want to be a kill joy...For those who don't know me, I had surgery with a TE on June 7... It went like a charm but 6 days after going home, my chest started swelling, turning colors and I started pouring blood out of the drains and the scar.... Surgeon said meet at ER... I had 81/54 blood pressure and I got sent right to surgery. It was a major hematoma and doctor said he removed 1,000 cc's of blood plus more after... 3 days later I started bleeding out of the scar and drains again while still in the hospital so I had another surgery.... During that time I needed 11 units of blood, 2 of platelets and 1 of plasma.... I spent a day in intensive care and was making my peace with loved ones. Anyway, finally went home, all going kind of well, then I woke up after about 10 days and the entire scar was opened, end to end.... So, they say it had to heal inside out on it's own so now I'm about 95% closed but it's almost 6 months later and it's horrible to look at... It was prepared for implants which never happened so it's lumpy and bumpy and ugly. On top of that, I started taking Femara which really sucks. It's causing me to suffer severe fits of anger at my loved ones, turning into crying fits.... So, now the question is do I go for reconstruction? The only way I can get it now is lattisimus dorsi (from the back) which he says is much more than the original TE to implant... Do I have him just flatten out the lumpy spots and get a prophalactic and mastectomy bra? I wish the doc could make the decision for me but of course, he won't. It is horrifying to look at now but on the other hand, my experience was so frightening. I'm 63, not wearing bikinis, not breast feeding and my husband doesn't care about feeling me up anymore ... We're both in our 60s and have evolved haha.... What to do; I don't know.... It will be a small surgery flattening it all out or a bigger surgery taking muscle and fat from my back. I went through so much with the complications so I don't know and I'm confused and wonder if any of you have an opinion.....

I am so glad to see so many of you have progressed so much since I was here in the summer. You are definitely a strong group of women. 

SusannahW

Dear Bev,

What a nightmare you've been through, you sound very strong.



If it were me I'd just want to be done with it all and getting on with my life. But if how it looks will bother you, or cause you regret I'm sure u have the strength to go through with the surgery.



Best of luck to you!

liefie

Dear Bev,

Wow, you've been through so much! Maybe just give yourself more time now, and it will hopefully become clear to you what you should do. I am facing a DIEP flap in May next year which I am not very excited about, but still have time to decide. It is very hard, because all I really want is to be done with all treatment. You will never be a killjoy on here, Bev. We are here for you, and you can share anything with us. Best wishes!

iatigger

Bev what an ordeal you have survived. I know personally I would not be willing to take the chance on another more involved surgery just for the sake of cosmetics. My mind would be telling me to stuff a bra and live my life to the fullest. Hugs to you during your difficult decision time.

Tazzy

Bev... hugs, hugs and more hugs.  How awful for you - I can not even imagine, you poor thing.  So glad you felt up to posting back here again.  Even though we cannot make your decisions for you, we can support you.  I agree with iatigger - to hell with the surgery for cosmetic reasons.   Get a silicone foobie, stuff the bra and dance away

I couldn't have immediate recon and my BS advised I wait a year.   You know what, I am so glad I dont have to think about another surgery at this time... and my mx went perfect.   Cant imagine the whirlwind you mind must be in.

_Ann_

Bevg49, yipes, what an ordeal!  I'd be afraid of another big surgery after all that as well.  It would be a difficult decision even without all the complications.  From what you have said it sounds like you'd be happier with scar revision than another big surgery.   You do not sound like you really want a reconstructed breast all that much.  I hope I have not mis-read your feelings about it.  Good luck with your decision.

lisa2012

Bev, you poor thing. Honestly. What an ordeal... and I tend to agree with Tazzy and others- it's not worth risking medical complications to do the fake breast thing (or as the temporary nipple tattoo site I ordered from calls them,"mounds." ) Being 57 I get what you are saying.. You might want to take care of that life spirit in the container called Your Body... HUGS

bevg49

I love you girls so much. Just the fact that I got 4 responses immediately after I posted made me tear up. Thank you so much just for making me feel cared for. You know, to be honest, I was leaning towards no recon... I'm diabetic and overweight, bad for healing and I don't think I could make it through what I went through. So I was leaning that way but you have really made me feel better about my probable choice. I can't explain why but I felt kind of ashamed to not get the recon. First of all, I love my plastic surgeon who saved my life so I feel like I'm letting him down even though he said it was perfectly fine either way. Second, I see many of you ladies going through so much to have breasts and I feel like somehow I'm lacking if I chicken out. Reading this I realize how absolutely dumb this sound..... I have to laugh, hahaha..... I feel guilty because I don't want more major surgery?? WTH.... Thanks so much for your support. I've been terribly depressed for awhile now. I got put on an antidepressent (trazadone)... It helps me sleep which I haven't been able to do since surgery than especially since Femara and it might be touching the depression. I know for a fact I'll get over it. I have 4 grandchildren that make me happy and one on the way. Until I do feel better though, it's wonderful to have you guys for support.

Bev... ------- by the way Susannah, how did you make out in Sandy? I live on the Queens/Nassau border and I was lucky.... Didn't lose power but lost cable for 9 days.... Many trees down and no gas but compared to others it wasnot too bad... My son lives in Nassau County and he had no power from LIPA for FIFTEEN DAYS... My daughter lives in Staten Island. Luckily her house is on a hill so she was okay but she was near the area of mass devastation.... Hope it wasn't too bad for you out there near the water.... Juneau, if you see this, how did you make out? and anyone else I don't see yet who is from our area. Love you guys.

juneaubugg

Bev: was thinking of you the other day. So sorry after all this time it's still at only 95%. As your experience is so rare, is there anything that might indicate you might be more inclined to additional complications if you do the latimus? I'd want to know that and then ask myself, will I HATE my body every time I see it? Hate being the extreme. i don't mean not like, or being unsatisfied; but loathe. If you won't hate what you don't see; then I wouldn't go through more. BUT if you'll dread every shower, every time you change then be done. Only YOU know how you feel about your body. Go with your gut.



(((Hugs, HUGS & MORE HUGS)))

SusannahW

Bev, we were very lucky, and had no damage from sandy. We lost cable for 1day, and that was it.



I sense a feeling of relief in you now that you're close to a decision. There is so much talk about recon, but I think that those who don't choose that route don't tend too post as much-they're done much faster. You have a lot of life ahead of you, time to stop suffering. God bless

MirandaSW

Wow Bev. Crazy scary.
I know a fellow breast cancer survivor in her 50s.  She chose not to have reconstruction for many of the reasons you mentioned. It just was not important to her at her age and place in life. So she chose to have it tattooed. The tattoo is a mural all the way across her chest starting on one side as an egg on a leaf and sort of morphing into a butterfly on the other side.  Lots of leaves, flowers, colors.

bevg49

Miranda - that's a very interesting thought. I can have the minor surgery to get rid of the lumps and bumps. He said he could make it smooth. When it finally heals, I could see myself doing something like that in a heartbeat.... What a great idea.

Juneau - first off, how'd you make out in sandy..... You got hit harder in Jersey but you had Christie and Obama doing a good job. We had bumbling Bloomberg who I now hate just because he was willing to host a marathon that starts in Staten Island where 22 people were dead, including two little boys whose mom lost hold of them in the rising water.... I hope you didn't have a bad time of it. What a storm though, huh? Climate change, no doubt about it....

I don't know if I'm more prone to more complications.... I am because I'm overweight and diabetic. I smoked but quit a year ago .... but the diabetes seems to be a big thing when it comes to healing but that's not what caused the major shit (hematoma).... 10 years ago I had a stent put into a coronary artery that was 80% blocked. I was put on a med called Plavix plus an aspirin a day. Protocol said don't take either 5 days before a surgery then it's okay to go back after... So I stopped then they started back in the hospital then I went home taking it. The cardio and the plastic surgeon agree it was the plavix and I should have stopped taking it at least 5 years ago but no one told me that.... Plavix thins blood and stops platelets from clogging... I had zero platelets at all but it didn't show up in my pre surg testing... So on top of everything else, when they decided they had to give me two bags of platelets that had to warn me and my family that there was risk of a heart attack but the benefit of platelets outweighed the risk because I couldn't stop bleeding. So, I stopped taking plavix forever. Doc says as long as I'm not on plavix there is little risk but I don't trust that. I can't begin to tell you how scary the two emergecy surgeries were and coming out of surgery and feeling worse not better. I have time to make a final decision but I think I could NOT loathe myself...As long as I  can wear clothes (with the prosthesis) ..... I still have one left if I wanna look at it or my husband wants to feel it hahahahaha.....

Nkb

Bev- you might want to check out this post about people who choose not to have reconstruction. Called the flat look vs prothesis

http://community.breastcancer.org/forum/82/topic/610613?page=10#top



The silicone foobies are soft and fairly light if you don't go too big and fit inside a bra with pockets. They are expensive but sometimes covered by insurance.

mcook301

Hi ladies



Thanks for advice about frozen shoulder. Once again I am awaking by the pain at 2 am and it is making it really hard to keep up with work and I am trying but I am so worn out. Problem is they released me with no restrictions and I am worried about taking time off so I am assuming eventually they will not keep my job after my fmla runs out. It is not fair! I hate this pain! Worse than chemo for me!



Bev- sorry to hear about your surgery! I hope it is getting better!







It really pisses me off that all we go through and the long term side effects we have to deal with. It is making me go into this deep dark hole and I am not getting better but worse. I start PT next week but not sure how this will work as the pain is not letting me move my arm so maybe they will have to do surgery on that arm then of course the risk of lymphdema ugh! Fucking Cancer!



Sorry to be so negative but I just sit here and cry because I am so tired and can't keep up with everything and it seems people move on faster than me. I pray this gets better soon! It just seems something else is going on with all my pain and also being so tired all the time and how it has gotten worse than better in last few weeks. I know the exhaustion is not helping mentally.



I love you all and find comfort in all your post and it helps me a lot!

Tazzy

Bev:  just think you could multi-task with your DH…. While you are cooking dinner he can sit on the sofa and play with your foobie… keep everyone happy.

Mccook:  Imagine I am throwing you a line and as you grab it we will bring you back to the ‘light’ side of the tunnel.     I wish I was nearer to give you a hug.   Here’s a virtual one and a big shoulder to cry on.  Some people do move on and heal faster than others.   We can only go with how our bodies and minds are.     And I know you know that, sometimes helps for someone else to.   Oh! we don’t have to apologise here for being negative or having a pity party – that’s why we are here.   I have been reading lots or articles on acupuncture and how it has been helping cancer patients with their fatigue… just something you may want to look into.   (((hugs)))

Am getting reading for my trip to England today.  Am excited.

Minimal SE’s and hugs to everyone xx

Belinda977

Bev, ((HUGS)).  Hang in there.   

stride

Miranda, thanks for sharing that tattoo story. I think that's a great idea. A fake boob is good enough for a clothed body, and the real issue when naked is the scar. A tatoo could hide it, or maybe even incorporate it into a piece of art.

_Ann_

Mcook, I'm sorry you got hit with frozen shoulder.   When I had it the one thing that really helped for sleep was to hug a pillow so that my bad arm was always supported.  I also stuffed a small pillow under that arm to prevent the arm from collapsing against my body.  If I woke up with pain, the best thing to do was get out of bed, as the pain would abate in about an hour.  I'd recommend you find a good orthopedist with a shoulder specialty who has treated frozen shoulder.  I don't think PT's fully understand frozen shoulder.  I stuck it out without PT or surgery (on advice of my ortho) and just let it heal.  He told me if it did not un-freeze he could do surgery, but that surgery was not a quick fix-- it would require lots of painful PT to recover.  The truly painful phase for me (waking up with severe pain day after day) only lasted a couple weeks so it was bearable.  Over time the pain stopped and my range of motion came back.

bevg49

One of the biggest mistakes I made since June when I started this fun and lovely journey - not - was stopping posting.... You don't know how the caring posts make me feel. Cancer makes a person feel so alone even if they have family and friends. No body really understands. You guys do....

McCook, I see I'm not the only one going through shit and more shit. Fucking cancer is right. It sucks. I don't know anything about frozen shoulder so all I can do is offer hugs and well wishes and hope you can get it taken care of by a doctor (as opposed to PT) ASAP.... I read back several pages and see I might be the only one who almost bled to death from a hematoma, I'm far from the only one with complications. Some seem to get through this and heal quickly, others of us not. Luck of the draw maybe? 

I went to another thread called TE trouble. There were MANY women having a lot of complications with recon....I'm more convinced than ever (with your help) that I can't risk it. I don't want more pain, more PT, the possibility of sutures opening, the drains and all the rest. The advantage is I'll have a fake one. It won't match the real one anyway so will mainly be to look ok with clothes on. If that's the case, I've been reading about prosthesis and they seem adequate. Like I said, I'm 63, not 33.... I'd have a totally different agenda if I were younger. Thanks every one of you for your input....

Have a wonderful day to all.... Major big hugs to all of you not feeling well, going through crap or just having a bad day.... Yesterday and day before, that was me.. Today I feel better.... There is always hope, ladies.

mcook301

Tazzy - thank you and enjoy your trip! I am looking for some that does acup in my area. Welcome to small town Midwest:)



Ann- I hope mine goes away without surgery too! Thank u for infor



Bev- I totally agree even when I was not posting I missed everyone because you all understand and get it!



Thanks to everyone else I missed and making me feel better by being there for me! It helps so much!



Today I had an appointment with a massage therapist someone recommended and she was awesome not only because of the massage but she has a lot of connections with doctors and other medical professional that deal specifically with my issue and she said she would try and get me some help because she agreed my shoulder needs some major help. It made me feel better that at least someone today was listening and see first hand how much pain I was in and how it was affecting my posture as well. She said When I walked to the bathroom I was not swinging my arm and protecting it and it was throwing everything else off. I am praying hard she can help find me someone soon.



Has anyone known anyone with what they call, healing hands? I would not have believed it but today the energy she had I her hands was a weird feeling and it radiated a heat on area she touch for a few minutes at a time? I did not ask her but was told she had therapethic hands and I believe there was something special about her. Sounds odd but until today I would have not believe in it. Maybe I just wanted to believe it but something definitely was a different feeling almost like energy flow. she does not advertise and only by word of mouth appointments her main clients are cancer patients.



Well just thought I would share this to see if any of you had any opinions? Or experiences?



Take care everyone! ((((hugs))))