Mastectomy Sept 2011
Comments
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Oh Olga, I'm so sorry to hear this - another wrinkle - you've been having a really hard time and this is something no one should have to deal with . . . it's probably a defect in the TE, but I wonder the same thing as Caryn - should you maybe have a second opinion? Do you like your PS and trust him/her? It might just be bad luck, unfortunately. Hang in there. Big hugs.
Sarah
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Oh Olga, I'm so sorry to hear this - another wrinkle - you've been having a really hard time and this is something no one should have to deal with . . . it's probably a defect in the TE, but I wonder the same thing as Caryn - should you maybe have a second opinion? Do you like your PS and trust him/her? It might just be bad luck, unfortunately. Hang in there. Big hugs.
Sarah
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Hey Odie - any luck getting your drains out? Sorry about that pain . . . never heard of that?! What are/were you on, just out of curiosity?
Hope you all had a good Thanksgiving - ours was nice, although DH and I agreed that dinner at his sister's just didn't seem "special enough" for this year . . . she is always harried and distracted and put-upon and well, we just really wanted to have a nice, warm, meaningful day w/family. No matter - the rest of the weekend was great - fun times with our little family of three (Muppet movie, nice long walks - the weather was gorgeous here) and had our neighbors over Sat. night for the first get-together at our place since surgery. I didn't want it to end!
Back to reality today - DH gone for the entire week, so my well-being will be put to the acid test - solo parenting all week plus a busy week to boot. Been feeling pretty good, although today I'm wiped - could it be that DH had to be up at 4:30 for that flight outa Dodge?? Ugh.
I'm off to bed, seriously. Hope the week holds promise for us all!
Sarah
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Sarah,
Victory!! Got rid of the drains today, yippee!!! Which also means I can stop taking the antibiotic... (Levaquin).. Took me a week to figure out that it was causing the knee pain, thank goodness for nurse friends. She pointed out the "black box" warning on this class of antibiotics after I told her of my knee pain...
Otherwise though, I told the PS that I am really happy with the current outcome. He notes I have alot of healing to go but it will only get better. Appeared really pleased with his work and noted it to be "almost perfect"... Boy did hubby crack up when I told him that one! My PS also noted that I have sailed through treatment since I first saw him 08/03 and am now almost done.. Realize I have been as lucky as anyone with cancer could be considering and really hope some of my good fortune rubs off on the rest of my September breast friends....
Will see him again in 8 weeks to compare the before pictures to now.. That visit should be a riot!
Take it at your own pace this week Sarah and you'll do great. You had an early day so I hope you can have an early night to catch up on some well needed rest...
Hope everyone makes great progress and gets only good news from here out.. Hugs to all!
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Having a rough couple of days, so thought I would do something positive and send you all my warmest greetings tonight. It is cold here, so hot chocolate is the plan tonight. I ordered a Christmas tree last week, which arrived today (pre-lit and pre-decorated!) and may put it up tonight or may have to wait until the weekend. Something to add a little sparkle and some semblance of "normal" to the house.
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Linda hope today is better.
Sarah-- take it slow and easy this week.
Odie16 -- yea to getting the drains out.
Update on me -- I'm out on my first business trip. The airports were crazy yesterday but I am so glad to be back at it. Prior to starting Chemo last May I was taking on average 2 business trips per month. I fly home tonight after my meeting. Fri is hopefully my last fill and we should get my exchange scheduled. Yea
Have a good day everyone.0 -
Hi friends,
Linda - I hope things are looking up - is it the pain? Life in general? Whatever's contributing to the bad week . . . I hope it goes the heck away!
Margie - must feel awesome to be back in the game - will be so great to get that exchange date on the calendar.
Odie - YES! And almost perfect? Awesome. What more can a girl ask for?
Well, it's Wednesday, and I'm feeling better, not worse, so that is a sign things are going well. And although I hesitate to say I'm at 100%, I did work out for 90 minutes today and burned up 706 of those post-surgical calories, so I think . .. well . .. I might be BACK. We'll see what tomorrow brings, and I'm still not lifting much weight per order of the PT, but I'm doing a happy dance.
I hope everyone is having a good Wednesday . . . whether it's hanging tough with treatment or celebrating small victories - it's a long road, but glad to have you gals along for the ride.
Sarah
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Sarah, this is great! I want to be back too... just 2 chemos... and a little more...I did go to TE TROUBLE forum and found some ladies with the same leaking problems as mine. It just happens.
Odie, happy for you! And for you, Margie! Cannot wait to fly to Chicago see my kids...
I am doing a little knitting now, some warm socks for my son and grandson, it helps not to think about problems...My dog Rocky got steroids and antibiotics , he has allergies, and I know exactly how he feels. The only difference between us is that he pees on the kitchen floor now...
Linda, Caryn, I hope you feel better...Thanks everyone for the good words and praying, it does help...hugs, Olga
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Hi everyone!
Just popping in to say it's nice to hear from everyone. I'm doing well. I recently started preparing for my next fat grafting at the end of December (trying to get one more in before rads, if I do them, in January). I have to wear an external expander device called a Brava for several weeks. I'm working up to 10 hours a night. I've worn it 2 times so far, got up to 7 hours last night sleeping with it. So far, so good! I'm really psyched that it is going well so far. Only mild skin irritation that is expected and resolves within a few hours. It's pretty wild - I can actually see small swelling already right after the domes are removed. It doesn't last, but that is normal. Basically the process is a cummulative one that results in increased blood vessel supply and space for the next fat graft - so that it has good blood supply and does not necrose.
Thinking of you all. Our paths are all different, yet similar as we face various challenges and try to work on resuming our normal activities and/or dealing with continuing treatment challenges. Even though I'm not done with my treatment yet, I decided to read a book about resuming your life after breast cancer treatment. I'm in the beginning part still, but one point it made was that before you get back to your normal routine, sit down and make a list of goals of how you want to live your life differently based upon what you've learned from your experience. They said that once you get back into the rush-rush of life, you may go back to your old patterns and forget the lessons you've learned. I'm working on making my list and will share a few for me:
1) don't be afraid to try new things b/c of fear of failure. You only get one chance at this life.
2) don't be afraid to share you opinion/speak your mind. If people don't like you because of something you've said, you really don't need them in your life anyways.
3) stop the unconscious internal small judgements you make of others. When you judge them, you are really judging yourself.
4) MAKE the time to spend with friends and family. This is what you will wish you had done more of someday.
These are all things I've known intellectually before but didn't really FEEL them inside my heart so acutely until being diagnosed with bc.
Feel free to share what you have learned and hope to remember as you move forward/continue to be treated/heal from this.
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Hi Ladies,
Brief update: The chest tube was pulled today! It wasn't painful but a great annoyance. I have an enormous bandage over the site but it can come off after tomorrow. Finished my first week of radiation to my hip lesion and it's been uneventful. On Dec. 20th I will start a monthly Aredia infusion ( through the port that started all this lung trouble). Have been taking Arimidex for almost 2 weeks and no SE's yet. Have a great weekend.
Caryn0 -
Caryn - Yay for getting rid of the chest tube finally!!!! Also very glad to hear you are tolerating your treatments so well.
TGIF all!
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Caryn, glad to hear you finally go rid of that annoying chest tube! Best wishes for some uneventful treatment from here on out!
Olga, you crack me up! The image of your dog peeing on the kitchen floor.... Hoping you are doing well with the chemo this week.
Odie, Sarah, Dancetrancer, Margie, and all the rest of you, wishing you a good weekend.
I am doing a little better - saw my PCP and am getting better pain relief. I have had chronic pain issues before, and we are trying to prevent complex regional pain by getting the current pain under better control. I hate taking more drugs, but don't want those stupid neurons to get hypersensitized, so will deal with the drowsiness and constipation for a while I guess. I was just getting ready to go back to my adult dance classes twice a week, but developed Achilles tendinitis - was told "don't walk" - arrgghhhh!!!!!
Every time I seem to be making progress, something else happens and sets me back a couple of weeks or more.So today I went to an art workshop and just lost myself in the moment - completely escaped from the reality of cancer and recovery, just was "in the moment" of fun and creativity!
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Hello ladies...
Hope everyone is having a good weekend and glad to see some good news....
Survived my first full week back at work complete with Friday girls game night and a wedding to go to today. Been alot of activity and good times so I am a good tired...
DT - I understand what you mean about changes vs. returning to previous habits.. My list includes three changes I have learned/am working on;
**** Live simply and love generously
**** Show patience & kindness
***** Take NOTHING for granted
Caryn - Congrats on getting the chest tube out! I am sure you feel better without it. Sounds like you are making progress step by step and I am so glad. Continuing to send prayers and hugs your way..
Hope everyone else is doing well and is having a great weekend.
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Sounds like we are all making progress in our own ways. I forgot to mention that through all the collapsed lung/chest tube drama, no one mentioned that the port needed to be flushed. Agh! Can you imagine the port not being functional after all my suffering? Had an appointment to have it flushed at 4:00 today and was very nervous. Nurse said "I think it will be ok." Sure enough, heparin in, good blood return out! Hooray! Now I'm all set for my Aredia infusion on 12/20. Have a wonderful weekend. Caryn
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DANCETRANCER-That's one lesson i've learned from all of this. I am not worried about speaking up about anything anymore. The worst thing to happen is someone stops talking to me because of it. And I can live with that. Actually i've learned 2 things-I'm not worried about flying anymore. I've become a lot more fearless about things. I just feel like I have nothing to lose. Nothing could be as bad as this. In a way it's been pretty liberating and that's been a good thing.
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I love hearing what everyone is learning from their bc experience. Obviously I wish I never had to go through all of this, but since I have no choice, I'm trying to see what I can glean from it at least.
Linda - so sorry about the set back. You are very smart to take a proactive approach in preventing the pain from escalating.
Caryn - so glad the port was ok!
Hope everyone is having a nice weekend! We went out to a Christmas party last night. It was so fun hanging out with friends and having (gasp!) a few drinks, LOL.
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DT-- I have learned that I need to 'work to live rather then live to work'. I was a workaholic prior to this and have to constantly reminding myself that I need to take time to enjoy friends and family..
Caryn-- yea to the removal of the chest tube and the port working. I hope that is the end of your complication.
Linda-- sorry you are having pain issues. Hopefully it gets better.
Sarah-- woo hoo to the 90 min workout.
I am happy to say my first business trip was uneventful and didn't tried me out too much. Fri I got my last fill. PS put in 100cc which was my largest fill. I have been in pain and slept the last couple of nights in the recliner, but it is worth it knowing 4-5 weeks from now the TEs will be gone. I should hear my exchange surgery date tomorrow. YEA
Hope everyone had a great weekend.0 -
Hi Everyone! Sounds like there's been a little progress almost everywhere - we'll take it, right?
Caryn - YES! on the tube being out, and also for the EZ port flush . . . so glad that went OK and that you're ready for action.
DT - not sure what my take-away from Round II will be - I completely overhauled my life after Round I - quit my high-stakes job, started to live every day like I meant it, decided that my motto would be "no regrets" - doing what I want to do (of course, there is still that damn laundry!). We'll see . . . .
Linda - you've got to do what you need to do to find comfort, and if that's pain meds now, I think you should just take them and not beat yourself up. Great that you can find an escape in painting - take it!!!
Margie - congrats on the last fill and on work not pooping you out too much - excited you'll have your date tomorrow!
Odie - like you, I've been busy with fun things, but am pooped today. Not enough to send me to bed, but enough to make me slooooow down a little and take a few breaks from grocery shopping, doing laundry, decorating the house, decorating the tree, etc. etc. etc. etc. This is a tough time of year to be "coming back" b/c it's so darn hectic. On the OTHER hand, I'm so very excited to have more energy and to feel more like me for the holidays.
Here's to a good week for everyone!
Sarah
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Hi Ladies - I hope you all had a good weekend. I had my last fill Fri. My PS put in 100cc all my past fills had been 60-80cc. WOW I was in pain for two days. Fri it hurt to breath. Thankfully the pain only lasted a couple of days. I have ended up back in the recline and will probably stay in it for this week. I got the call this morning from my PS office with my exchange date. We were trying for the first week of Jan, but they couldn't get an OR till Jan 10. I don't know why that upset me but I sat at my desk and cried. I had in my mind that I was having the exchange Jan 3 week and pushing it back 1 week upset me. I really cant complain I have had minimal issues through chemo, BMX and fills - I guess I was just feeling sorry for myself.
Have a good Monday everyone.
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Oh Margie, I'm sorry you're put off a week - it's OK to complain - that's what we're here for. You're disappointed b/c you REALLY WANT TO HAVE THAT EXCHANGE! And you will, just not when you want. : ( You'll be fine - it's healthy to have a pity party once in a while. Hope you're feeling a little better by now . . . hugs.
Sarah
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Yeah Margie, I would be really bummed about any delay, too. We all just want this to be OVER as soon as it is possible!
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Margie - I am so sorry you have to wait a week later but promise you it will be worth the wait!!! Remember eyes on the prize and vent as needed. The disappointment is natural. My surgery was pushed back two days less than a week prior to my exchange so I totally understand. Hang in there!! (((HUGS)))
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Hey Ladies - I am sorry I haven't posted - I have been so cranky - but not enough to not check in on how my friends are doing.
Margie - I understand your crying - I cry a lot about my swelling and months of delay with these rocks. I have pity parties at least once a week. But I also celebrate my small victories - like a day without pain or doing ZUMBA for the first time in 9 weeks....
I am in a bah humbug mood this weekend because we suffered another financial setback - in addition to thousands of dollars in medical bills and having our deck hit during the storm - our water heater died.
So I am back to showering at the Y... and looking at a hefty bill to get hot water.
And my husband keeps saying - but at least you don't have cancer... but I am DONE with hardships and suffering - I want some goodness.
WAH WAH WAH - okay enough!
Love you all - keep you in my prayers - celebrating small victories and good days and sympathy and hugs to the harder days!!Love, Tina
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Margie, hang in there. You are tough, it is not fun, but keep your eye on the goal.
Caryn, glad to hear the port is still working. What an ordeal this has been for you!
Tina, it seems that these appliances go out at the least opportune time! I am so jealous you are back at zumba! Good for you!!! I was planning on getting back to my Friday dance class (tap dance, if you can believe it - I never had dance as a kid), but developed Achilles tendinitis on Thursday. PCP said I should be seen, the acute adult care doc said "don't walk" and to keep my appt with ortho tomorrow. It feels better today, but guess I will keep the appt.
My PT is still working on the cording issue, said if this is a nerve problem she wont't be able to do much, I will just have to learn to live with it. But it always feels better after therapy, so I am hopeful we are on the right track. She is very adamant that I start using a sleeve, especially for any flying and for strenuous activity. Anyone else doing that?
I sent a note to my BC asking for Rx for the sleeve and falsies so maybe I can look good in my slinky holiday dress!
Thanks to all of you for your support, and hugs to all tonight.
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Ah Tina, I understand having the blahs! We all deserve some goodness!!! I'm in that kind of mood myself today. It's because I need to make a decision soon about whether to have radiation or not. I just read over the packet the local rad clinic sent me, and it really depressed me just thinking about it. I have another appt with them next week to discuss further. I'm also probably going to get my 3rd opinion set up, hopefully also for next week.
I don't know girls. The research for my particular situation is so limited, and all small studies, which all say further research is needed. I really don't want to do it. It doesn't feel right in my gut. We'll see.
Love and hugs to all,
Lorraine
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Okay I am back again because I have a few other sisters to keep in our prayers and thoughts -
A coworker is going for a stereotactic biopsy tomorrow for some spots toward the back of her breast by the chest wall....
Another coworker had a sonogram and was cleared for a 6 month checkup but got a letter that said it's "PROBABLY BENIGN" - so I am encouraging her to push for more than PROBABLY NOT CANCER!
My cousin referred her highschool friend to me who was just diagnosed with Invasive Ductal Carcinoma and she is going in for a single MX In a couple weeks so I will be sure to share the board with her.
TOO MANY SISTERS!! I have seen many of you posting about how things will be different for you going forward - and I know from this experience as I had from the first bout - I will share my experience with as many as I can. I know women who have had mammograms because they know me - our circle of influence is HUGE ladies - so Spread the word - we can help as many sisters as possible until we have a cure for this!!!
Off to sleep - early to go shower at the Y....
Tina
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Lorraine - our posts crossed - but if your gut says something isn't right ... then you trust it -
keep asking questions girlfriend. I just wrote that note to my cousins' friend - about how this is your body and be informed and ask questions - and know what your options are....
Stay strong Lorraine - You will find the right path for you - you have to live with your decisions - no one else.... HUGS!
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Thank you Tina!!!
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Ladies thanks for all the hugs yesterday they really helped, plus I went to the gym last night and taught my Pilates class and being with my group is so uplifting. I'm in a much better mood today.
Tina - wow you have had enough already. I hope you can get the new hot water heater at a good price. I agree about spreading the word. I have been very open about my diagnosis and treatment since it started. If I can help just one person with what I have experienced that would be great.
Lorraine - you do have a tough decision when it comes to rads. I have a friend who just finished last week. She is triple negative so really didn't have a choice. She extremely tired and has some skin damage but not too bad. I am sure you will come to the decision that is best for you.
Linda -- I hope your Achilles gets better soon so you can get back to dancing. We all need as many "normal" things in our lives as we can get.
Odie16 -- how are your squishies doing? Are you loving them?
Thank you all for always being there and being so supportive. I know that I can vent to you and you all understand where it is coming from. sending you all hugs !!!
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Oh friends, I'm so sorry to hear of distress, money woes, etc. etc. etc.! I just feel like we should all get an umlimited free pass from crap after what we've been through . . . at least a one-year reprieve, right? Ugh.
Lorraine - I'm with Tina, get your info., then trust your gut. Remember, if it could go either way, you're not reckless for choosing one way or the other . . . this is not an exact science, unfortunately, and you do need to give your gut some credit. It's just been a long time for all of this to come together and I'm sure you are sick of it all. Hang tough for a little while longer while you get that other opinion and then make a pivot and don't look back. You are doing an awesome job teasing all this out!
Margie - so glad you taught and that you're feeling a little better. No one understands this stuff like women who've been there, done that. Little or big, it all matters.
Tina - waaaaaaah. I am keeping you guys in my thoughts - this is enough.
Linda - Fingers crossed that all these health setbacks get cleared up quickly so you can get moving again and feel more like YOU. I did wear a sleeve when exercising and for travel after Round I - but since I have no symptoms of LE and the thinking has changed re risk, my PT (same one who told me to do the sleeve) says now I don't need one (this is for the left, where I had a few nodes removed plus rads). I think it's a "better safe than sorry" situation, so if you can stand the sleeve, I'd get one.
All - helping other women has been by far, the greatest gift for me since my first diagnosis. I started when I was getting chemo, back in early 2002, and although I've stopped running an organization and siting on boards, I'm still getting calls and emails from friends w/friends who've been newly diagnosed. There is nothing more healing for me than to hear that I've helped ease the way for another woman who has breast cancer.
I'm off to shower and do some errands. Rainy and gray here in Boston and I really would like to crawl into bed. Might indulge myself w/a movie later, before school gets out!
Sarah
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