January 2014 Surgery Sisters
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Well, things are great overall, but it looks like I've developed/am developing lymphedema. I'm seeing the surgeon Friday and he is planning to refer me to a lymphedema clinic. The LE part I'm not very happy about, but I am feeling a lot of relief because I have decided not to pursue reconstruction right now. I am scheduled for an LD flap surgery and TE placement in May, but am going to call and ask the office to take me off the schedule for now. I just have not been able to get to the point of feeling at peace about it; a good friend of mine said yesterday when we were talking about it that I clearly don't really want to do it right now, but for a couple of reasons have been trying to beat myself into it. I think hearing that was what I needed. I'm going to make getting into shape my project, and enjoying my summer with my son and husband (my mom died at the beginning of last summer, so it wasn't very enjoyable), and I will revisit as December gets closer (I have to work around my teaching schedule). I don't think I really need it at this point; I am pretty happy flat and my mastectomy bras came yesterday, so I can have boobs if I want them (lol). (But then, who knows how I will feel six months from now?)
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Happy Birthday Eve! I hope you put on your fanciest tiara and had a fantastic time!
Mary - Thank you. I will try the cold pack on my hip, which is where the worst pain seems to be. It kept me home today, and I'll have to tough it out tomorrow, no matter what, since I'm out of sick time. My MO's nurse practitioner did call me back to say that I should wait until after my 4/11 exchange surgery until 4/14 to start the Aromisin. She told me that my tumor was 99% ER/PR, but I don't know what my oncotype or score is, or if they even did that test, so I don't know what my odds of reoccurrence are. This is a question I will be asking for sure BEFORE I take any more AE's.
Alexandra - I'm in Martinez, which is about 45 mins. from San Francisco in NorCal too. Maybe we are close.
Laurie - I'm sorry about your daughter and hope she'll bounce back quickly. Stay warm! We're having an early Spring here and wish I could send it your way. No one deserves the sunshine more.
Love and hugs to all of you!
Diane.
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Diane - Oh, well ... good thing it's really just a few weeks away. I've read that exercise helps ease joint pain symptoms from AI's - if you can move, that is! Also, acupuncture is supposed to help, too.
aunt_paula - sorry to hear you have LE. Good thing is you've been diagnosed early and will get treated for it. Congrats on getting a good plan in place - that's half the battle!
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happy birthday, Eve! Sawadee Ka! I see tiaras everywhere now and think of you :-)
Aunt Paula, good luck with the LE. I hope peace finds you soon.
Diane, sorry about your se but congratulations on your tiara like weekend. I can't remember the last time I was up by design at 1:30am! You go girl! Good luck with work and feeling better.
Good day at my household. Confirmed today that we have a Sparty in the house! Those of you from the Great Lakes area or big ten will know what I mean:)
Gotta do a shout out to Genomic Health customer service. They have been awesome at keeping me up to date on my oncotype dx lab status and the time they would fax my results to my onco. Don't hesitate to call them if you need to. I shall have a plan soon!
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Anne - Way to take control! What might have been born out of you being pissed off has turned into something positive. I am hoping you get a quick turn around with good results so you can move forward and put this behind you!
Mary - I do have a great acupuncturist, but am hoping to avoid going, since it's $100 a visit, and insurance doesn't cover it. I'm better than I was yesterday at this time, and the ice helps. I'll try working tomorrow and maybe going for a walk at lunch to see if that helps.
Aunt Paula - I'm sorry you have to deal with LE, but so glad you have good help. We all have to find our own path, and I'm glad you have a plan that will give you some peace. Here's to enjoying your summer!
Diane.
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Laurie, so sorry your daughter was hurt. Thinking of her and you mom. Sleep is elusive for me also, I am having anxiety attacks in the middle of the night...did not have them a few weeks ago...oh well. Feel better...and keep massaging
Living as far north as you do, do you have the twilight nights? where the sun never really sets? I went to Copper Harbor MI in June a few years ago it is almost as far north as you are...we were sitting at a bar having a few beers, waiting for the sun to go down before we went off for dinner...oh my gosh at 11:30 pm I finally looked at the clock....it was still light out....really neat.Diane so sorry you are having problems with the pain, you absolutely should have the oncotype test. That test is what convinced me that AI's were not something I wanted to do. My er pr scores were also very high. but that score is just for the tumor cells not your good cells. It is all so confusing, and everyone is different. I hope you can find something that works. And the pain goes away ASAP!
Aunt Paula...ditto on the LE...that is crappy along with everything else. How many nodes did you have removed?
Eve
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Also,
Thanks for the B'day wishes.
I am getting a hand held gps for my present, and then we are going Geocaching. It is like a treasure hunt. You get coordinates and go on hikes...there are over 3 million places to look for these stashes all over the world. People hide stuff and you find it., sign a log and upload your experience to geocachers..(sp) anyway it is a neat way to get to know more about where you live and for me to get outside with my family.
MMTA not sure what sawadee ka means but if it is like bam! zowie! I did a sawadee ka on the kitchen today. Spring cleaning ...pulled out the fridge , the stove...ha! cleaned cupboards.....yes!...have to mop the floor and I am done.
so gotta go,
love to all,
Eve
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Only three, during the sentinel node biopsy--and that wasn't even on the side with the LE. Go figure!
Happy birthday! Geocaching sounds fun--I work at a university, and several of my students have had awesome geocaching trips. I hope you have a blast!
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Only three...wth. My BS said I didn't have to worry about LE. I had 2 removed...you know, why can't there be a bit more consistency in all of this. At least you would think with LE all the docs could be on the same page. AND with chemo too. I see a lot of siggys that are the same as mine and theses women have had chemo. I don't get it.
I was intrigued by Geocaching as a result of a couple of hikes I went on with my step son's scout troop. I had no idea that these off the beaten track places existed here in a very Disney fantasy world area. Who knew the eco systems could change in a few yards. Or seeing Florida Panther tracks coupled with deer tracks(fast food) were there right in front of your eyes. Exciting stuff...
Sooo aunt Paula what do you teach? feel better
love and hugs
Eve
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That was my thought exactly--I didn't think I was at risk of developing LE at all. I had the SNB, three nodes removed, on the right, no SNB/node removal on the left, and a smooth, unremarkable recovery. I haven't been able to go without compression since surgery, but thought I "should" be able to (surgeon said it was completely up to my comfort level at that point, six weeks after surgery), so even though I was really uncomfortable I dropped the compression. Haven't been able to get the swelling down since.
I teach a psychology class (my "real" job is counseling).
I need to get some of your motivation and hit some spring cleaning (especially my oven--ugh. I hate cleaning it.)
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well, now I am thinking maybe I'd better be more careful....nah...I will just keep doing what I am doing. If I do get LE and not to make light of it, I'll get a sleeve that looks like an awesome tattoo....rock on... Please...know I am NOT making light of having LE....K?
I minored in psychology. The first counselor I ever went to changed my life forever...fabulous lady.
Anyhow....The reason I went full tilt today...cleaning the kitchen and then continued on to the dining room, is, that I saw a bug. A roach bug....ewwwww....I HATE roaches ,so the whole house has to come apart and put back together.....I hate roaches....sigh... I do live in florida so those bugs are a given...but yuk yuk yuk. We are soooo bombing the heck outa this house this weekend....
So you ladies that have cold weather still...be happy....hopefully you don't have the critters that we have down here. did I say YUK????
Laurie how is your daughter doing this evening? hope all is well.
totally love you ladies
Eve
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Well, the acupuncture really helped. The pain in my hips and knees is gone and my back in better. He also gave me some foul smelling herbs to help me "detox" from the Femara. My acupuncturist is a former pharmacist and we had a long talk about AI's. He's not a big fan unless the numbers (i.e. oncoscore) warrant it due to the SE's. My MO won't be doing the onco testing, since she says the tumor wasn't large enough and it was garden variety IDC. I'm leaning in your direction Eve. I'll listen to what they have to say at my next appointment, but unless they can really show me it's worth going through this pain a 3rd time, I don't think I'll do it.
So...I would be in hog heaven if I hadn't awakened with the worst head cold ever! Really?! Just had a really great evening that ended with a sinus rinse...I know, I have ALL the fun!
Oh well, at least my foobs don't hurt today, and with tomorrow being Thursday, the weekend is almost here.
Sweet dreams everyone!
Diane.
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Diane,
That's great you got some relief! Don't forget - acupuncture is tax-deductible. That reminds me, gotta get to my accountant.
Today I'm having a colonoscopy done. UGH!!! Wish me luck!
Happy Spring!
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Have FUN with that Mary.
let us know how everything comes out...bada bing bada boom.
love ya
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I am in San Jose now, dktd (Diane), moved from Alameda and still miss the bay. But work is plenty down here . Hope all is going well, ladies , I am just having my 2nd chemo (1 third done!)
Alexandra
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bravo! Alexandra,
Hope chemo goes well and you have no SE's. Where are you in San Jose...I was born there. There are times i'd like to go back and visit all the neat places I was able to visit as a kid. Mt. Diablo, Stevens Creek Dam, brought home a ton of pollywogs from there.
Thoughts are with you.
Mary, how did things go? Hope you are home and relaxing.
Laurie, is your daughter ok? thinking of you.
Michelle, did you have your first rad treatment today? holding your hand....
Diane hope you are feeling better and the pain continues to subside.
well, of course, I hurt my old back moving heavy objects yesterday....it was worth it. No more bugs. The source was a box my DH brought home from The Wine Store. No more boxes allowed... the wine is ok lol
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Eve - well, I survived the procedure, but they found 2 polyps. Now I have to wait 2-3 weeks for the results
I'm a little worried because my mom had all sorts of problems with polyps - the precancerous kind. No colon cancer in the family, thank goodness. Good news is that my pap smear turned out fine...phew! At least I don't have to worry about that. Hard to believe tomorrow is Friday! Things are starting to warm up and melt around here, although not fast enough for me.
This weekend I'm going out to try on bras and low cut shirts. Just to get an idea of how I look so far. I have a little cleavage, but want a bit more. I'm going to have to make up my mind soon. Why is this so hard???
Night all!
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Hi girls. No things are not great here. The stress has piled up to a point where my boyfriend and me are not good! Not sure what to do.
I've gone to counselling this week....didn't do much for me. Everything seems to be out of control.
My daughter went to school Monday and Tuesday after her concussion...and that made it worse. So no school or anything for her for at least a week.
Good luck today with your chemo Alexandria. 1/3 done! Yeah!
Take care everyone....have a great weekend!
Laurie
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Laurie I'm so sorry! I hope things work out with your boyfriend and that your daughter feels better soon. Sending you many many positive thoughts and hugs. Counseling is a great idea.
Hang in there! We are all with you!
di
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Thanks Di.
I hope we work it out too...just so much to deal with. He thinks I should be better by now. I am trying.
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Laurie,
Thinking of you and your daughter, poor thing.
So , tell your boyfriend to get on here and he'll see that there are over 100,000 women that are in varying stages of recovery that aren't better either. And define better for me damn it. Counseling is good in order to figure out how to live with the cancer thing hanging over our heads for the rest of our lives, but counseling is ever better for those people who love us, to help them figure out how best to SUPPORT US, again...damn it.
Remember ladies if you don't put that tiara on you won't be treated like the beautiful princesses you are !
love and hugs,
Eve
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Yay! Mary,
I think they always find polyps. Never heard of a colonoscopy where they didn't. The little buggers will come back AOK. No worries.
Yay! for clear paps too.
I need to do all of that...I am going to wait until after my first BC scan, then I'll look into the other tests.
Glad Spring is springing. Sun and warmth is always a good thing.
TTYL
Eve
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Laurie,
So sorry to hear things aren't going well at home. I read the other day that for every hour you are under anesthesia, it takes one month to recover from surgery. I'm assuming they're just talking about the anesthesia. I was under for 7 hours - so 7 months of recovery is what I'm giving myself and I realize it will take longer psychologically. My husband most likely would not agree. He looked at me one day and said, "You're good as new." Oh really? Since when did you crawl inside my head or skin and feel what's going on? Men! But it's hard for those who haven't gone through cancer to understand that even if you look good on the outside, inside you may be reeling and wondering what just happened??? There are good days and bad days, of course. I force myself to get out of bed everyday and make every effort to return to life after cancer, but we all know how hard that is (sigh). Yeah, Eve - exactly! Define "better."
I'm looking forward to my appointment with a psych RN next week who specializes in working with breast cancer survivors. I'm sure she will have tips that don't just involve medication.
I hope both you and your daughter get some much-needed rest!
Sending hugs and wishing you all healing vibes!!!
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Rant Alert....this is my wicked princess tiara, I don't take it out very often.....but when I do....
I have just about had it with asshole people that don't have a clue or are willing to find out about how we might be feeling at any given moment in this crappy , yes...shitty journey (hate the word) that we did not choose to be traveling on.
Holy cow, just freaking when is it, where is it written that there is a date, that a certain specific amount of time has passed where we "should" be AOK...
Really?
So how about you get your diseased balls loped off and then we will put rock hard TE's in there and then every once in a while shoot some saline or silicone in there....just so you look "normal" oh and wait, how about we tattoo some wrinkles and hair on there just so you are more realistic....ha ha ha! So what would your recovery time be...huh? Oh wait dumbass.....all the while your are getting radiation, chemo and taking some sort of untested hormone that totally upsets your whole body.
K you tell me....when do I get back to your effing normal.....
News flash!!! I simply don't, and won't. This is my freak out right now...my pain, my fear, my everything! period.
I will get "better" in my own time at my own pace, and I expect, YES, expect anyone in my life that truly cares about me to give me all the time I need.
My DH has been very supportive...kinda...last week I had made a really great dinner...lots of cooking...anyway I was about to serve it up and he actually said "You are NOT using real plates are you? (meaning not paper) "Well don't expect me to wash them" I am thinking HUH? No one ever asks you to wash dishes....I was so pissed....I left the house in tears...bare feet, it was 8:30pm and walked the neighborhood crying. I mean REALLY?! Came home, Oh he had a really hard day at work....well I had a really hard day with effing cancer hanging over my head. So get over your hard day and don't take it out on me!...Of course all is well...
just an illustration how stupid stuff can take over, because I think in the end we are all scared.
However, taking out that black, wicked tiara is warranted at times.
love, strength ,peace and healing hugs
Eve
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You go girl!
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Bwahahahaha!!! Oh, god - that's good stuff, Eve!! TE's for guys!!!
Where's the laughing my ass off icon?? Altho sorry to hear you had to go out walking late at night and in tears. I hate it when that happens!! Here's hoping you all have a better weekend.
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we are fine Mary,
we are fine because I put the wicked tiara on...every once in a while.
Now we have a private joke about paper plates.... I could talk about cold showers and you do have a hand.....TMI...
but you all get it.
my point, is, we as women always have a right to give permission about how our bodies are used ...or not. Or if we are in the mood or not.
This cancer thing , gives us an absolute right to feel what we feel when we feel it. Slam and dunk!
I read the post to my DH and he agreed...he was an idiot that night...I in turn agreed with him...lol
I just want to be a voice and give you all a place where you are not holding back on what is really bothering you. Who else but us right here can truly understand?
love you guys,
Eve
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Eve,
You are great!! I shared your post w my husband and he was like, wow!!! He got it!! He's been great but we have been talking about me going back to work soon. I'm not sure I'm ready.... Physically or emotionally. We decided i would go back april 7, because financially well i have to. My principal called me today and asked if I was coming back too soon. I was like I'm not sure, but financially I need to. She doesn't want me to come back til I'm ready. Now I'm like, maybe I shouldn't go back yet. She said to me, if you had 115 sick days would you come back on April 7? Well that wasn't a fair question- of course not!! But I have no days, according to contract I have until April 21 and I'm not being paid. And then what happens if I use all 45 days and need to take a day off?!?! She's also concerned about having coverage so I can leave once a week early to have my fill done or if I'm too sore on the day after a fill to come in etc... This sucks!!! I am going to call the superintendent on Monday to set up an appointment to meet w her to discuss my options. It was mentioned- kind of in passing that after the 45 days if I wasn't able to come back they would do a sick bank. Well that could help!!! I have to decide and soon- that I know I just need to know my options!!
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Thanks ladies....for understanding. I AM getting better...I know it. But I sometimes think my family thinks (wishes) it was happening faster.
My BF and me are going to get thru this. My mom offered to stay with my daughter so we can get away. So hopefully in the next couple of weeks!
Today is a good day....I hope everyone is enjoying their weekends!
Big hugs to all my new friends!
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Thanks, ladies, feeling okay so far, fatigued, but having a Saturday morning by myself in the sun. Hair is gone now, my DH buzzed it Thursday night, the shedding was disgusting. Just indulged in lots of cute hats - I am so not a wig person, I don't give a s""" what people think and see. No hair is kind of liberating though, makes you see yourself completely naked.
Going back to work this week was hard, but taking my mind off the cancer thing and makes me feel productive. Next week will probably be hard though. May you all have a great WE. We all will get through this, even with the rough days.
Hugs, Alexandra
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