January 2014 Surgery Sisters
Comments
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Laurie, so sorry - I hope it gets better very soon. I had a similarly sucky day yesterday, my UMX was 1/29, and I was healing very well, but I have now the TE pain, nerve pain and itching. Also got a med port for chemo yesterday, and my whole upper body is sore, had to drive myself to surgery yesterday, because the person to pick up the kids for school in the morning was late, so my DH had to drive them to school and than came to the surgery center. I am so tired of pain , of the stiff neck, of all the med crap ... Starting chemo next week and am frightened. My DH has been very good about all of this, but he does not get that I am scared of chemo (6x CTH) and believes that the MO will have SE under control. Thanks for letting me rant, it's the first time I am doing that.
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Summerwheat - Rant all you want, we're here for you. The port area will settle down in a week and you will barely notice it after that. As for chemo - it is different for everyone, just like being pregnant. Some ladies sail through it with no nausea or other SEs. Other ladies are laid low for months. I was on the side of many, many SEs but I know others who didn't miss a day of work except for treatment days. My RO told me yesterday it seems to be about 25% have the worse time, 25% have it easy and the rest fall somewhere in the middle. Try to stay as well hydrated as you can to wash all the toxins out after chemo. It kills cells (using water in the process) and they need to get flushed out. Your MO has a lot tricks he/she can use so if you're having problems let them know. Just be aware that chemo and the anti-nausea drugs can cause severe constipation and try to stay ahead of it. If I can make it through you can too. It's OK to be scared but you will survive!
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Oh Laurie,
I am just so sorry that the pain is so bad. Are you taking a pain killer when you go to bed? If I have done a lot, relatively speaking, during the day I take half one at bedtime. My BS, today, said to keep taking them if I need them...to not, repeat not try and get through this with out them...that it is ok.
I was in so much pain..the sternum ..well, every where... so yesterday I watched a you tube video of a mastectomy..Mary didn't you also?
OMy freaking God....no wonder we hurt....holy crap the stuff they do to you. Then they pop the TE's/gummy bears in and start pumping them up and moving that pectoral muscle which isn't supposed to be moved AND the skin inside is raw as shit and cauterized and well YEAH we are in pain. So load up on the damn pain killers.
As for work, who the hell cares what others think. If anyone has a problem or can't figure out what to say or what to do about your DX...walk away. Who has time to educate people or give one flying eff for their feelings. If they really cared they would be asking you what they can do for you!
Do you all remember Elizabeth Edwards (she had BC) and John Edwards...he was running for president (the scum bag)? The day she found out about his "love child" they were on a plane, there were a bunch of secrete service agents on board. She ripped open her shirt and says to John " What the hell are wrong with these" and then actually stayed with the idiot...until all the news broke about his indiscretions......
POINT....eff 'em all...only one person to worry about right now...and that is YOU!!
K my rant is over. The TIARA has spoken
I actually had a great visit with my BS today. All is well and healing nicely. Still have to baby the nips. She explained the oncotype test to me..which I already knew most of it. And is sending me to an MO for the hormonal stuff. When I told her I didn't want to take them....I thought she was going to be upset with me.....but instead she was on my side. wow, it is nice to be listened to.
But I will go and see what the MO has to say.
We actually talked about shopping for shoes more that my boobs....I felt almost normal.
This is way too long...lol
love you guys
Eve
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My heart goes out to all of you who are doing chemo (((hugs)))
Eve - no, I didn't see the MX video, but Oh. My. God. That sounds awful....don't think I could watch it! I sure hope that when I have my 2nd fill next week I'm not back on the pain train. I'm going to ask her to take it easy after what Laurie went through.
Things are going pretty good in my little corner of the world....except it's snowing. Again. Supposed to get 6 inches, or did I already mention that? Can't remember what I did or didn't say from one post to the next. Hormonal brain....Today I'm just going to hunker down and watch Mad Men. I don't have cable and heard my friends talking about the show, so I rented the 1st season and now I"m hooked.
Today my PCP finally came through with a referral to a PT. My only problem right now is getting my arm back in shape, and get the shoulder and neck pain to go away. Also trying to stick to daily exercise like walking everyday ... not today, though, unless I strap on some skis. Oh, but I'd love to be able to do that!!
Here's a fun pic for you gals with foobs....
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Thanks girls. I hate to complain....since many of you have had chemo....which I'm sure is so much worse. I think if it wasn't for the pain at night...and lack of sleep....I'd be doing pretty good. I did a full grocery shop alone today. I'm so accomplished! LOL
Laurie
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I see some of you have had fills already... my surgery was Jan. 28 and I still haven't had a fill yet. When my last drain came out last week, I was told I probably wouldn't get my first fill for another month or so. Is that normal?
btw, in addition to the pinching pain from the lymph node site, I still have a yeast infection. I took another diflucan yesterday; the itching kept me up most of the night and today, I felt like a dog with fleas, woof woof. I soaked in the tub with baking soda which helped for a while, then it came back with a vengeance. I made a paste with the baking soda and then it felt worse. I just took a Benadryl, so hopefully that will work. What we women have to go through, ugh.
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Eve - I went completely crazing looking at reconstruction photos and watched several MX videos before I made my choice for BMX. I wanted to know what I should expect. My PS, Dr. Ghorbani had a latisimus dorsi reconstruction, which of course isn't what we had, but the nipple reconstruction section (you don't have to watch all of it to see it) I thought was amazing, and was the reason I chose him. Surgical videos aren't for the squeamish for sure, but if you feel like checking it out, he's at ghorbanimd.com. I do have to say that so far, I am happy I chose him, because my scars aren't nearly as bad as many of the pictures I saw.
Claire - My PS told me fills would start at 4 weeks, so that sounds normal to me, but OMG, you need to call your OB and get something better to take care of the YI. You shouldn't have to deal with that too.
Diane.
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Hi Claire:
I had my surgery on Jan. 3rd and I have not had a fill yet. My first fill will be March 5th. I had 430cc put in at time of bmx and my PS wanted me to fully heal and make sure the skin was ready to expand and not cause an issue with my incision.
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Claire - I had my first fill about 3 weeks after my BMX. During surgery they put air in my TE's (280 cc's in right / 300 in left). During the first fill, they took out the air and replaced it with saline (310 in right / 330 in left). My next fill is scheduled for Feb. 26th. I'm going every two weeks because of the distance - my clinic is over 3 hours away. I'm afraid, though, that I"ll be getting more in each time. We'll see...
Diane - do you have TE's or did you do a flap? My scars are worse than most because I had a lumpectomy and re-excision before the BMX. So I've had 3 surgeries and it shows. Oh well...battle scars of a warrior princess!
Laurie - yep, no sleep will getcha every time. Have you tried Melatonin? My MO said it's okay to use, so I"m trying it...I'm supposed to start out at 5 mg and if after a couple weeks it doesn't work, try up to 10 mg. And if that doesn't work, I'll have to ask my PCP for something stronger. Congrats on grocery shopping! Baby steps....
Summerwheat - Oh my gosh, girl. You are only 3 weeks out! I'd be surprised if you're were NOT in pain. Give it time and give yourself a pat on the back for making it this far!
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OMG, I am almost giddy today. Saw my OT today and the pain I was having down my left arm was some cording that she took care of. Pain gone and range of motion greatly improved already.
Then off to PS for my first fill. It was not nearly as uncomfortable as I had imagined. Found out I already had 200ccs at time do surgery and he added 100 today. When he first told me that was what he was planning I internally panicked given some of the stories I read in various threads. However, he told me as we started this relationship that I would not be in pain. I took a deep breath and decided to trust him. So far so good! He did warn me I may feel tight and uncomfortable tonight. We shall see!
Now for the part that really made me excited. I had been wrapped in an ace bandage for three weeks and I got the all clear to remove it. I can wear whatever I want! No surgical bra, no compression bra. I am pulling an Eve tonight and will me au natural for the rest of the day and sleeping tonight.
I hope tomorrow with my MO goes as well!
Claire- are you an Outlander fan? :-). Had to ask with your name being Claire Fraser!
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Thanks, Grace B., I am feeling a bit better today, had a long walk in beautiful Cal weather (sorry to hear about more snow and cold everywhere else), that usually does it. I want to hug my kids again without any warnings, they are almost afraid of touching me now. I trust that my MO will provide whatever is needed for the side effects, I really like her (she has her own small practice, and I don't feel like "just another patient"). So, off to a new "adventure" next week, I guess ...
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well see y'all
That is why I rant about all of us having to deal with soooo much! I know I am lucky that I don't have to do chemo. Sometimes I wish it would work for me. But it won't. None of us should have to make other people feel better about us EVER!
And Claire, my cousin has endometrial cancer with mets...she is doing fine, but she has had a yeast infection for 4 months and is seeing a vaginal specialist for it....it is from the progesterone she is taking. ahhhhhh! Have you tried AZO Yeast or culturell? They are over the counter meds that really help. Are you on anti-biotics? They will give you a yeast infection .
Mary, I hope the pt helps.
Laurie, you aren't complaining...just looking for answers...like all of us. That's a real big problem for me too....why to we have to fight for answers for pain and infections and PT or anything. It should all be right there for us.
Why do we feel bad that WE need help...how about just a little compassion in this crappy journey.
Help should be offered to us on a silver platter.
Diane...If I watched the mx video before surgery...I would have run in the opposite direction. But at least I now know why we are all in various levels of pain.
Boy, I am in a pissy mood today. I just feel badly for you guys that aren't doing so well.
Love and hugs
Eve
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oh and BTW LAURIE,
Canada kicked our butts in women's hockey today at the Olympics. Way to go!
at least it wasn't curling again.
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momaton, I haven't tried AZO Yeast or Culturelle... I will definitely look into that. I was on a strong antibiotic after my surgery, hence the YI (they do it to me every time). I eat a lot of Greek yogurt, but I guess that just isn't enough.
mmtagirl, I am a HUGE Outlander fan... you can even say I'm
obsessed with all things Jamie, lol. Don't even me started on the
Starz mini series that's coming this year. I am beyond excited,
especially after seeing the trailer. I love that Ronald Moore is
sticking closely to the book in order to please Diana's readers... 25 million of us!Thanks, ladies for the feedback on fills. This Board has been a Godsend to me during this time in my life.
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Mary - I have expanders. I hear you on the videos. Maybe that's why my friends called me brave, because a few of them watched it too...BWAAAHhh.
MMTAgirl - so glad you are having a good day. We need those for the bad ones.
Eve - even in a bad mood, you are still fabulous. (((hugs)))!!
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Hey ladies! I'm kinda flipping out in panic right now. Here's the situation. I had BMx on jan 29 w immediate reconstruction w Tes. I have had to have one side aspirated 42cc last week and this week had the beginnings of an infection. The ps cut off the unhealthy skin, institched the bottom of the incision, drained it a little etc and re stitched. Now I feel like a little ball, like the size of a cherry tomato, roundish and formed in my breast. Down like on the bottom side... What could this be? I'm going to bs tomorrow for her to look at it but wondered if u had any ideas??
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Mommyatome - don't freak out. It could be a lot of things, but when I had that, it was a hematoma, which is just a little blood collecting. They can take care of it, as they did with mine, and it was not painful...just a pain in the butt since it puts your fills behind. Deep breaths. I don't blame you for panicing, because it scared me enough to call the PS on a Sunday, but if you have something that will calm you down, take it, and your BS will take care of you. (((Hugs))) Diane.
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well I don't know whether to laugh or cry....I saw my PS this morning and he thought I was looking great and healing well. He drained a little fluid and told me to come back in 2 weeks. Next stop....radiologist for simulation. Lots of poking, measuring, taping etc. in the end my RO told me that my foobs were too big and it was hard for her to get the beam in the right direction!!!!!!! Her suggestion was to take some of the fluid out of the right breast (non involved side) so that way the beam projection hitting the left foob would be free and clear not to hit anything on the right. So she made a call to my PS and back to his office I went. He took out 125cc!!!!!!!!!!! That us half of what was there. I look ridiculous to say the least. From what I'm told, it's not uncommon for women to gave to do this.
I swear, this whole medical marathon is so hard. Will I ever be done??? I know you've all had your fair share of trying times but I am really getting sick of soooo many hurdles. The way I see it, I'm done with chemo, surgery, 1st step of reconstruction. Now I just have to get through rads and finish reconstruction. My PS says that it is common for a woman to spend 2 years in treatment before she gets on the other side if the rainbow..sigh.....0 -
Diane,
If it is a hematoma, how do they take care of it? Three weeks out and have yet to have a fill because of various reasons... In all honesty I'm not too concerned about the fill but I'm scared about first having to be aspirated, then beginning an infection, now I feel this lumpy thing!!! Ugh!!'n
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Girlstrong - I really feel for you having to go thru this. Before my surgery I was really sweating it out - facing possible radiation with reconstruction. I had met with my BS, PS and RO ahead of time and grilled them with questions about the process because I was fearful of what would happen. The way they explained it, if I remember correctly, they have to work around the lungs and heart and to get the correct angle on the left breast, they sometimes have to deflate the right TE (my cancer was in the left breast). The RO and PS have to 'work together' to get the rads where they need to be. So -- as you just learned -- this is what has to be done. I was lucky - since there were no more positive nodes found during surgery, no rads were necessary.
Personally I think it is amazing that they can even do stuff like this! In these modern times you can have expanders AND get radiation. Amazing!!! Some docs in smaller locales are not as experienced in this and would not even attempt it - like at my local cancer clinic. That's why I travel 3 hours to one of the most prestigious centers in the country. You must be getting good care because it sounds like they are working together to get it done right. You're on the long road, but hang in there!
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Mommyathome - try not to worry until tomorrow if you can help it. If it is a hematoma, it might just absorb. Mine didn't but it was a 10 minute procedure for my PS to go using a tiny incision and clean it out. I didn't watch, but it wasn't at all bad. This was a week ago Tuesday and it was much larger...about 4 inches. Your's may just absorb, that is, if that's what it is. It could also be that you are feeling the port. That's why I would just wait until they look at it. Hang in there!
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the most gentle hugs to all of you. I wish I could flit around the US and to Canada (al la tinkerbell) and just give every one a hug and make life ok.
My heart is with all of you.
I feel powerless to make every thing ok.
If you can, and maybe this sounds cheesy,
for one minute
close your eyes
take a relaxing breath
and know
deep in your mind and heart,
your soul,
that I love you,
that we love each other,
we were brought together for a reason.
that peace is ours,
I feel your blessed presence in my life.
No one can give to me what you all have given me.
You have illuminated my darkest hours with your unconditional light and love.
We Will get beyond this hell, we will make a new life, a different life, but a better life.
And we will be friends in spirit, through pain, with joy, knowing that healing is a process but in the end our journey is something that we will continue to share and we will nurture each other always.
you all with your openness and acceptance and awesomeness, continue to amaze me every moment of my day.
ROCK ON sisters.
love you
Eve
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Eve, rock on! Glad you are feeling better. Feel our love in this sisterhood!
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(((((Group Hug!)))))
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Group hug...definitely . We are BC sisters . Thank you, needed those messages. 0 -
So well said Eve
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Oh no, don't stress! I don't want to do that at all. I can tell you it's very doable and worth it. You can go any cup size that your PS approves. I asked for a C because I've always had a C or D. I really don't care if it ends up a B but heck, my stomach sticks out more than my boobs now and forever. . It doesn't hurt when they put the saline solution in. They mark where the port is, stick in the needle and you don't feel it since it is still numb. I was anxious my first time just cause I didn't know what to expect so when I walked out I was thinking well that was nothing.
It's like putting air in a balloon so the more saline it has the more it feels swollen. I couldn't sleep on that side because it was too much pressure and that's what you are reading about. Take a pain pill and/or muscle relaxer cause your skin is already being pulled tight and the more saline they put in then it's pulled tighter making it feel like an iron bra. It's a time you just have to get through but you can. I slept sitting up so that I wouldn't roll and laying down in the bed was really uncomfortable. You'll figure out what works for you. My PS went with 100cc each time but I learned from the great women on here that I could have taken less. My PS is a little speed demon and did 100cc each time. It took 3 trips, once a week and now I'm done because he filled them halfway during surgery. I'm so happy I wore a sports bra today, okay it was a little uncomfortable, and even though it reminded me of being 10 yrs old and in my first training bra, I smiled brightly!
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I'm in for the big group hug too! Good sleeps everyone! I'm calling it a night!
Laurie
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Eve...your message was so beautiful it made me cry. Hugs to everyone forcsure.
Diane
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Dtkd,
I don't have a port.... Just took a Valium. Hoping to sleep and like u said wait and see....
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