Moving On......After the Flap
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Sbe, my onco said that he would switch me to Letrozole after 2 and a half years on Tamo - apparently there was a study done that showed fewer recurrences with Tamo followed by an Aromatase inhibitor, bla bla bla . . . I can't keep up with all these things. Also, I don't particularly want to switch, because I have so few SE's on Tamo. So not looking forward to that. The latest protocol is ten years on these drugs. It has a better rate against recurrence than 5 years. It just never stops - we're in it for the long haul. Congrats on refraining from a comment to that woman. She's suffering from lack of education re bc, but then again, we are only educated because we are forced to, right?
UTI's suck big time. I was on a dragon boat team, and after every competition I ended up with a UTI from sitting in the wet boat. Had to withdraw from it - such a lovely thing to do on a hot summer afternoon paddling on the lake, and visiting with 21 other ladies. Still missing that cameraderie.
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Went in for another ultrasound. It's not much better yet BUT the good news was that my PS is sending his medical assistant for 3D tattoo training. I was thrilled and told her I'd wait til she's trained to get my tattoos. Silver lining.
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Teacher, here is hoping that scar tissue behaves itself soon! I LOVE you smocking, those girls are going to look adorable!
I scheduled my tats for December 2. Using the woman at U of Penn who's work looks great based on pictures. I was away at the beach last week and am just now catching up. Had a great appt with PS today and feeling happy.
Also can I say I suspect I need a support group (ba dum dum, psshhhhh) for my bra buying obsession, which is actually not that bad but kinda seems like it. With the new nips I finally "cashed in" my prescription for two bras at U of Penn. They are DREAMY. $55.00 a pop but insurance reimburses for two a year if reconstruction. The brand is Amoena and they are wide enough to encase the girls but not having the pointiness that many bras have where there is this space at the end of your breast that can dent in the cups....
Just in case anyone is still on the hunt for the right bra, this one "gets" the DIEP girl....
Hugs to all, I went back to work yesterday and it was surprisingly more tolerable and actually pleasant since I had enjoyed time off from everything.... Son was off to college with my husband helping yesterday and I didn't go and was proud of myself for my restraint. He is 22 so it was easier, glad "THING 1" did ok for you, Nihahi. Enjoy your time away!
I love everyone's pictures, what beautiful grandchildren you all have and of course sweet puppies. This is how I hope you feel as you get some form, some way of pampering even if it s reading a good book with your feet up.
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enjoyevrymoment - I have to bathe my dog in the shower to contain her. She won't cooperate with me. Thankfully, she will let the groomer do anything. Wish she be like that with me! I hope I can get tats before Christmas but will have to see. I do know I can get bras in 4 weeks and will look for Amoena.
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Okay, okay. I finally decided to post a picture of my grandchild. He's the brown one. His name is Rhett Butler. The yellow lab is my girl Chloe. It's an old picture so I will be sure to get a pic the next Tim's he is over. You will love his droopy dog face.
I do hope to have two-legged grandchildren someday...
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All grandchildren, two legs or four, are wonderful.
My grandgirls had a good first day of kindergarten. Karina won a prize for reading so many books over the summer. She reads on a second grade level, so I hope she gets challenged. Melina fell down, got a bloody knee and decided the school nurse was nice. Karina said she wants to go back tomorrow. (Like there's a choice!)
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Janet I also do the a.m. achy feet shuffle. And there are many time I feel 90 in my joints but mismatched to my 40ish mental age feeling (and nowhere near my real almost 50yo). I went off Tamox for my stage 1 and off again now for my stage 2 on wed. And I feel so great off of it. I swear that mentally I am sharper also and I think slightly more patient.
I p,an to have the "do I really need it, show me the numbers" convo with my medonc at fup in Oct. Really feeling good off of tamox.
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I don't have time to post, but had to share this great picture of my grand baby, Carter. It is his first week of solid food. His mommy made him carrots. Love you all.
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Adorable, Cherrie!
Teacher, hang in there! You have a good attitude.
Janet, I hope you get some answers soon. My cancer side LE arm/hand tingles. It goes away when I wear the dreaded sleeve, though. I think I had some nerve damage to that limb in an old MVA(car crash) ., too.
Sbel, I am on Tamo for a couple years because I have osteopenia (some say the drug companies made up that condition) and I'm trying to build up my bones before they're assaulted by an AI through diet, exercise and supplements. I have a raging internal furnace on Tamo and my legs are stiff but otherwise ok.
What a weekend!!! We walked for miles, went on boats, ate great food, toured a castle and zip lined through the trees. It was fantastic! My belly is sore from over-stretching it while arching upside-down on the zipline, which reminded me of DIEP, but it was worth it! Ready for another forty years with my hunk.
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Cherrie, that could be the first child to smile after tasting carrots for the first time. So cute!
Jeannie, I'm glad to hear you went "all in". Sounds like a blast.
So I spoke in front of about 100 people yesterday to kick off the Komen Race (my company is the lead sponsor). I'm not a huge Komen fan, but I was so happy to learn that they are going to start giving more toward research. A pet peeve of mine is that they give 75% to local educational and prevention programs, and 25% toward research. They market it with the word "cure" so that should be the focus. Otherwise, they should call it "Race for the Mammogram". Okay, getting off my soapbox now...
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Cherrie - those must be some yummy carrots! Made me smile.
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Zenful, I wish I could have heard you speak! I'm sure you gave everyone something to think about.
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Cherrie, what a gorgeous smiley baby! I love the fuzzy halo of duck-fine hair, too, and the eyes... You are a happy granny!
Zenful, I wish I could have heard your address to the crowd too. My feelings are similar to yours as far as Komen goes. But I've been in your position--the somewhat reluctant, but willing, owner and operator of "poster boobs"--and it's hard to be all bah, humbug, when throngs of people want to support YOU, not some faceless woman in a pink tee shirt. I'm sure you represented us with elegance and graciousness. "Race for the mammogram." OK, that cracked me up.
Night ride tonight! No wildlife except another lazy, longhorn cow, and a couple of bats. Oh, and a hootey owl.
Nihahi, missing you. I hope you're having a blast.
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Cherrie, such a cute picture of a darling little boy! Little Em also started eating solids a few weeks ago. DD says she's so grateful for Milli, their golden retriever, who cleans the floor after every meal. A messy stage indeed.
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I loved Carter's expression, Cherrie.
Zenful good for you for speaking, I agree with you about the need for more research.
Jeannie, wow! A zipline? You are my hero. I would like to try that sometime but am sure my tummy would protest as well!
To you long time flap recoverers- can I ask you (although like everything I know there will be widely different answers) I still have a little sore spot where the one drain was on my breast that previously had cancer. I see my gyn in October, and my pcp soon, but how do you know what to image and what to biopsy and what to worry about? It has been there since the surgery and has not changed but when I lie on my left side it feels a bit bumpy. It feels just like the other scars on my breast, in my case the scars are like a lollipop with the areola flap scar and a straight line down from that. I am to get an MRI in October according to my oncologist.
So my question is 1. Our breasts after DIEP (or variants thereof) are slightly bumpy from scarring, how do we know what we are feeling is normal vs not normal.
2. Who would you go to about it to be sure, I am going to call my oncologist today but just checking.
3. Who does breast exams on you for maintenance care? Is the oncologist the best (I have regular appts with him) or would the gyn be better as far as the exams go?
Thanks for answering.
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This was my project for the day. The smocking was finished. It's all lined. I know it's not traditional to have a snaps but my buttonholer died. The glove is smocked on because I had a pattern. The hat, ball, and bat are buttons. It was good therapy except for when I hit my thumb with the hammer pounding in the snaps!
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Just want to let everybody know that I have just booked my flight to Portland - this is getting real now!
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Teach, gorgeous smocking once again, you could sell that stuff and be a wealthy woman!
Bosom, missed ya, hope you do great once the nipple thing and all are done!
Liefie, you and the gang have a great time, we all want to see pictures!
Talked to onc. Will see him Tuesday, no worries.
Off to work!, take care!
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Hey Ladies!
Had a good time away, but glad to be back.
BB....good to "hear" from you again! I'm glad you've found the doc you want....get yourself in a good place physically and mentally while you're waiting..."then look out world....BB is back"..right!!!!!!
too much to catch up on, and I confess....almost didn't..... Hope that doesn't sound terrible, but I'm taking it as a positive thing. I felt a real mental/emotional break from the whole "rodeo" this time away. However, I AM looking forward to the getaway.....22 days till we meet in person!!!!!!!
jeannie...sounds like a wonderful, happy, adventurous time....! Was it CraigDarroch castle??? I've been there, too. (Darroch is my family name)
love the grandbaby pics.....Carter and the 4 legged variety. Too cute for words.
Gotta go....busy day....love to all!
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Wow, so much to catch-up on!! Smocking and carrots!! All of you are always in my thoughts and prayers. My household is totally upside down as my daughter is trying to impose her "super quiet" in my house. I always was loud when my kids were growing up so they could sleep through a train coming through. And I forgot how many times a 4 year old does the opposite of what you want. It is getting easier as the 18 month is not screaming 24/7 now.
All of my reconstruction activity is the same--no changes. sigh.
My biological Dad was admitted Sunday night and the doctors thought it was an ulcer but now suspect stomach cancer. They sent him home today with Oxygen 24-7 which is what I mentioned when he was over a couple of Saturdays ago. This Saturday an ultrasound will be done and I should know something. He didn't want to stay in the hospital and I don't blame him there. It is scarey to wait like this again but we all have been there and know it will be what it will be.
Love to all Kat
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Hello everyone,
The doggie and baby pictures are sure cute. Cherrie, those carrots must have been really good! You have an adorable grand baby. Teacher, your sewing is amazing. Jeannie, it sounds like you had a great getaway. Zenful, it is so great that you were able to speak to the group. I'm waiting for more grand dog pics!
Welcome back BB! I hope your new recon works well. It's good to hear the excitement in your "voice". Enjoy, my BS does my exam. Neither she or my MO are suggesting any scans or anything other than manual breast checks. That seems to vary a lot.
I thought my only SEs from Femara were the night sweats and hot flashes. Maybe my inability to get up out of a chair isn't only because of the extra weight I'm carrying. I'm sure that is part of it. I have not had any arthritis type issues in my hands and/or feet. Bailey, I hope the new AI is still working well for you. Hope you are getting some ME time.
Janet, my DH has neuropathy in his feet from remicade infusions. It didn't start right away. It was probably a couple of years later.
September 19, 2014 is 21 days away. I can hardly wait! Wishing all of you ladies were going to be there. ...Julie
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hey ladies
I'm 2 weeks into my dog ear recovery and I am so happy to not have those pointy edges anymore. I didn't bruise that bad ( well my skin is dark so maybe I just couldn't tell as much lol) but I'm HATING this compression thing. Teacher I see you're here in tx so you know it's been sooo hot. Just walking my lil pup I can feel sweat dripping down my back and in all kinds of ungodly places. I feel like I need to wash it everyday ( TMI?)
Anywho, enjoy thanks for the bra tip. Since I had one side done its been hard finding a bra that doesn't gap. All that's left is nipples.. One more surgery to go.
I'm headed to Seattle in a couple weeks.. Ill have to join you gals at the next meetup
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butterfleyez - know what you mean about the sweat. I've been inside as much as possible on days of over 100. Today it was humidity and we didn't get a drop of rain.
I still have a sponge bob look on the right side. It's the side that had most bruising and the bulge. I so hope that look disappears so it looks like the left. I'm an impatient patient!!0 -
I just wanted to share with the Moving On thread that I am actually, totally, completely, finally, thoroughly, wholly, absolutely, & forever finished with my reconstruction! The day does come! Prayers for the rest of you as you also complete this journey. My DIEP flap is whiter than my natural boob & chest, but that is nothing a little nude sunbathing won't take care of! Think I should? I posted my final reconstruction pic on the pic forum today. My tattoo just had its last touch up & still needs to fade a little to match the natural nip. I don't think I'll ever stop coming back here to check on you wonderful ladies! XOXO
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teacher I wonder why one side is squared.. Was it like that before they fixed it or is this a new look? I have a 7 min walk from my car to my office and I know it's 7 min because I thought it was an hour in these 100+ days. I really wish I could get in the pool.. Oh well.
Sharon! How amazing is that!! You are dancing in the light at the end of the tunnel! I hope to be there by January
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Sharon.....you look and sound wonderful!!!! I'm closing in on that final horizon too. Yep, we're ALL gonna get there.
movie....thinking of you.....sending hugs. 20 days and counting.........
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Sharon - Congratulations on being wholly reconstructed and fully complete!
You look amazing. I hope you have something fabulous lined up to celebrate crossing the finish line! Yay!
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Kat sending you and your family calming thoughts and wishes. Keep us posted. We are thinking of you.
Sharon hurray go celebrate! We all look forward to our own done-day and share your joy!
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Just a quick update....I called movie tonight and had a good chat with her. Caring for her mom is still consuming most of her time and energy, and in typical "movie" fashion, now she has a busted washing machine while coping with an incontinent mother. If any of you are looking for her, check the local laundromat!!!! Thankfully, she is getting away tomorrow for some "me time". Of course, she sends hugs to all and is SOOOO looking forward to the getaway.
sbe....Hope you're getting lots of bike rides and pool time in, before the next (last???) dance with the PS????
Hugs and happy long weekend wishes to everyone!
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enjoy at my hospital they have an aftercare department that will see me and follow up with exams. I also get checked at Gyno.
I'm trying to figure out if I should be doing any kind of pelvis ultrasound due to the increased risk from tamoxifen.
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