DIEP 2013

FireDragonll

I just figured out that if I put a old bandana, under my surgical bra, the velcro doesn't bother me. I can't believe it took me this long to figure it out. Duh

christina0001

Tracy, a mimosa sounds really good right now.

DebDylan, yes, this disease takes so much from us. It is hard to lose your hair but I agree with the ladies here, the anticipation is worse than the actuality. It sucks to not have hair, but it does pass. You can do this, I promise.

bluebird did you pick out a puppy yet?

Any word from Goldie?

Bailey thanks for sharing your story, I am looking at a hysterectomy next year and reading your experience is so helpful. I went to hystersisters or whatever that website is too but it wasn't as informative as I had hoped.

Today I was able to wear one of my old bras relatively comfortably. I was really shocked. It didn't fit perfect but I needed the clear straps with the dress I wore to work. I can't wait to get new nice bras but I am waiting until after stage II. I am probably driving DH nuts looking online at Victoria's Secret. lol Until then I will stick with my oh-so-comfy Balis.

goldie4040

Hi guys, got home a couple of hours ago.  I was anticipating IV sedation, and a quick snap back to reality.  They decided to go with light anethestia instead, which meant a recovery period with waiting for BP and Oxygen levels to be on target before I could leave.

The doc told my husband, who is not great at asking in depth questions, that the nodules were very fixed and hard.  He took a biopsy, I will hear in a week to 10 days?!!!!  I don't think so.  When my husband told me that I was so pissed off. Honey, you need to be more aggressive, and ask more questions. He said, "well he did say he thought they were benign from looking at them."  Okay, now we are getting somewhere.  I will be calling the docs office on Monday. 

Thanks for all the prayers, and good wishes.  They help me so much.  I really hope I don't have to wait very long for biopsy results.  But, things do look good.

Incidentalomas!!!!!  That should be added to our private vocabulary list

Jeannie57

Goldie, we're with you all the way!

Sharon1942

Goldie, so glad the nodules look benign! Hope you get the biopsy back quickly so you can get on with your plans! This, too, shall pass, but the quicker the better!!

Curlylocks

I feel like I have run a hundred miles this week but I havent.LOL  Lots of frustation still waiting for a confirmed surgery date, like WTH are they going to tell me the day before?  It seems in the U.S. you know months in advance, how hard is it to put together two surgeons, book an OR and be done with it?  They already consulted with each other on what the plan was- end of November.  We are talking like 8 or 9 weeks from now...come on people..get on the blower!  I really hope they call me next week, that's probably why I am so exhausted stressing over it:(  It is really hard planning my work load at work when I dont have the date...okay off my soap box for today

Had a pedicure and manicure after work tonight....awe love just soaking my footsies in that little tub that smells so nice.   I will have to make sure my toes are all done up for surgery.  Although I will be a wreck, my toe nails will look pretty:) My nails maybe not so much as I assume you would have to have them colour free so they can monitor your vitals?

Goldie - any news yet?

Debdylan - I wore out a white and black bandana and another coloured one...didnt like the idea of a wig, hotflashes and a wig didnt seem to appealing.  Although I went through chemo in the colder months Dec-May, didnt like wearing a hat either except a baseball cap.  It is hard loosing your hair but it is only temporary for the prize at the end = longer life.  Maybe I should come over there and hell at the morons that work in that office! Deb, I havent filled out any forms for financial help but I have to say take all the financial assistance you can get...you have the right to it!

I remember how exciting it was when the little hairs started to sprout on my head...I stole a small mirror from my husbands truck so that I could use it to see the back of my head and examine it EVERY day to see how much it grew.  I swear my hubby was gonna break that mirror or hide it.LOL

Sweetpickle - when is your ooph scheduled for?  One thing I didnt mention was that dryness down there is pretty common with menopause, ky jelly is my friend now..blushing One other thing aside from the chemo brain which is long gone, menopause causes memory loss or what I would like to call "lots of blond moments", although I am not blond - a natural brunette.

For you ladies colouring your hair when it just grows back, be careful as the hair is still quite fragile when it grows in.  I used a temporary rinse for a few months just to be on the safe side.  It had no amonia in it.

Firedragon - you sound like you are doing good and things are going well.

Bailey - Did you have cancerous cells in your cervix?  I had an abnormal pap for the first time ever in late 2007 (2 years after bc diagnosis) - was high grade pre-cancerous cells of cervix...had a cone biopsy which they remove a wedge section of your cervix while you are out to ensure there was nothing else there.  It took care of the issue, had it done same time as my oopherectomy.  I go every year for a colposcopy (more invasive version of the pap) every year with my gyno...so far it has come back normal for past 5 years.  I told my gyno if it ever came back pre-cancerous again, my uterus was going for it too...enough stress already dealing with bc!

Nihai - How much Melatonin do you take?  Others that use it, does it work for you?  Do you take it every night?

Carmelle - welcome, wishing you a uneventful surgery next week!

Sherry - fingers crossed that all goes well on the 27th..another thing to cross of the list of being done and on your way to moving on in this process.

Jagkit - welcome, bc certainly is one hell of a journey, I have been on the journey for 8 years next month.  It does get easier as the years go by but life is definitely a "new normal". 

Hugs to those still struggling.  May you find the strength within to get through the tough days knowing that tomorrow will most certainly be a better day.

Michele

sweetpickle

Curlylocks- Im still waiting on a surgery date. Im a medicaid person and there is some kind of delay right now in my state, its very frustrating because I wanted this done before christmas but what cwn you do right?



I need some input about lymphodema ladies. My right side is swollen from my breast all the way around to my back and is tender, not hot or red though. Im wondering if it could be trunk lymphedema. If it is that what can you do? My weight today is four pounds higher than yesterday and I dont ever fluctuate like that.

Kat-ski

Hi Sisters!!  It is a waiting game for now.  I wish I had the same patience I had when I taught preschool.  lol!!  I wanted to share my puppy(3 years) with you.  At five weeks, she looked like a mixed-up Snickers bar hence the name is Snickers!  She plays like a cat b/c she has two here.  I hope you don't mind the sharing of my comfort and joy!!

Anonymous

Okay...more on hyster and ooph...I have had 3 paps in last 30 years that have come back with suspicious cells. Had a couple of colposcopies....those aren't fun. Then I was dx with ER + HER2+ BC and the gyno lost their minds. They could not wait to yank my plumbing out. They did a uterine biopsy that was benign but still kept calling me to schedule the sx lol. I felt confident (and so did my onco) that my big guns chemo was killing anything anywhere. I insisted on getting through chemo, mx and rads and then having a few weeks to refill my tank before they took me in the OR again.



I had hot flashes before surgery....but they were worse immediately after sx. I still have them pretty bad but I take Celexa to help control them. I also like my CHILLOW (as seen on tv) at night and in hospital. I didn't notice the emotional ups and downs afterward....but I have the Celexa, so that probably controls that as well. I did get the inability to sleep. Ugh it was BAD! I went back to work at 3 weeks....I could've gone at 2, though, if not for the inability to sleep. Don't hesitate to try and get what you need to make you be able to feel good and sleep. Estrogen helps you to be able to do those things.....once it's gone your body can feel like hell....it's ok to try something to make it better. Just one warning for taking Celexa....take it in the morning! Otherwise it will keep you awake at night....last thing we need!

sweetpickle

I took celexa after my daughter was born, good to know it helps with the hot flashes. How has yur weight been Bailey? Ive hears its harder to lose weight afterward.

Cherrie

Just wanted you guys to know that I came home today. That is one day earlier than I thought I would. I must say that this surgery was a piece of cake compared to others. No narcotics, I am taking Tylenol and a Flexeril at bedtime. My left hip area and inner thighs lipoed and are tender. I walked some today.



I remember being so jealous of girls being done too. I can't believe I am done. It has been ten months. I will have compression on for quite a while as Dr. Massey likes us to wear it "forever".



Thanks for your continued support. I couldn't have done all this without you cheerleaders.

Curlylocks

Sweet pickle - weight has been a struggle..if I get the motivation to get back into running again..it really helps keep the weight off! My biggest issue with the weight gain after my ooph was i developed a muffin top that i never had before..loss of estrogen maybe?

Tired gotta, get some zzzzzs



Michele

sweetpickle

Big congrats Cherrie! Glad to hear that your pain is minimal



Curlylocks- Im building up to walking an hour on the treadmill but my weight isnt budging, I cant imagine it getting harder after the ooph! Sleep well. :-)

mky

Hey there, I've been lurking around various brca forums since I first found out I was positive (87% risk w/ several deaths in the family including a couple cousins in their late 20s/early 30s ).

I'm 24 years old and spent the 2 years immediately after college teaching English in Japan. I've just moved back to California and am staying with my parents until I figure out what it is I'm doing with my life.

What's beginning to feel like my biggest life decision is whether or not I should focus on getting a job now and build up my resume or go through preventive BMX and reconstruction NOW while I'm fully covered by my parents' insurance. I've read a lot of articles/blogs by other 20-somethings who have gone through the same thing and are completely happy. 

I'd be doing the surgery in California so I can recover with parents who have already dealt with this recovery process when my mom went through chemo&rad/bmx/reconstruction, BUT I'm wary of pushing off the job hunt for too long. My ideal timeline is to be able to seriously job hunt by the end of the year with an optomistic goal of starting work in early 2014 (w/ the added speedbump that I'd like to relocate to Seattle).

I've got a lot more questions after that, but I'm going to spend a bit more time reading through the forums before I get into any specifics. Any thoughts or bits of wisdom would be much appreciated!

Anonymous

Sorry Sweet....I missed a post...on the lymphedema...try to get a referral to an LE doctor. We have one right at the cancer center here. I see his PA...and the physical therapists and occupational therapists that specialize in LE and shoulder ROM, ETC. I was taught manual lymphatic drainage (not hard...not at all painful) and, up until DIEP, I wore a special compression bra for a few hours a day. Ugh. But it helps. It could be a seroma....if you gently push on the edge of the swelly part does is cause a wave to go across it....like a water bed bladder? Or does the area feel just sort of spongy and boggy when you feel it? You are doing the right thing watching it for signs of infection...keep that up! I ended up in hospital on iv antibiotics with a nasty infected seroma.



Weight. There's not my favorite subject lol!



So I had gotten a new lease on life in January 2011 and worked really hard and started biking and lost 40lbs. Was so happy and felt so good...better than in years. And then I went to the doctor and got cancer (I'm sure that's how it happened ....I felt fine until I went to the doctor.) But seriously...I lost a lot of adipose tissue in my breasts on the diet and that's probably why I found the cancer. Divine intervention.



I managed to keep the weight off through chemo.....but started ballooning afterward. Chemo gave me foot neuropathy...Herceptin made me swollen and round....rads exhausted me.....hyster and ooph zapped me and by the end of treatment a year later I had put on the 40 lbs.



So in January of 2013 I joined a weight loss program through the hospital here. It was a very low calorie, high protein diet and exercise and group support program. I lost 30 lbs before DIEP. I have gained back 10 but I am working on it!



Post diep was hard on me. I think, like someone else here recently said, during diep recovery it was like the whole two prior years came crashing down on me for a while there. I think it's because through all of treatment I kept moving....sometimes at a snail's pace....but moving....and I would have a day here and there that kept me in bed sleeping, the next day I was out of bed and going to work and being mom, etc. I was off work for only 2 weeks with mx. But at two weeks of diep I was just learning how to safely get out of the chair!



Menopause and cancer treatments made it much harder for me to lose weight. But it is doable. It's likely to take longer than it has in the past and likely you will have to burn more calories than the average bear to lose a pound....but you can! I chased it forever....the reason I wasn't losing I mean. We did sleep studies, I did thyroid testing, I had vitamin levels checked....the works. Oh, went on testosterone, too.



I don't want to sound discouraging....just realistic....for me anyway. It was hard....it's still hard...I am on the "I've been through a lot I deserve this" diet lol!!! Exercise is my key. I hate running with a passion, but I do it so I can eat red velvet cake! But I LOVE riding my bike. and I love good food....it's usually healthy stuff.....but I love to eat. I love to cook. I love to go our with friends and socialize around the dinner table.



Hope that helps!

Jeannie57

Sweetpickle, it is good that you are aware of truncal LE. I don't know if that is what you have. You should be evaluated by an LE therapist. I found mine through my radiation oncologist. Check with your docs and if they can't recommend one, check out the National Lymphedema Network online: www.lymphnet.org. I haven't "joined" or spent much time there but they have a page where you can search for a therapist. I follow 2 LE threads on bco.org, too. One is "All things gloves and sleeves."The other is something like "Grrrrrrr.....I hate lymphedema." There could be others, too. There are compression garments, special massage, exercises, etc. but you should know what you are dealing with first.



I had a hysterectomy in my late thirties and an oopherectomy on my right side only, about ten years ago. I wanted to keep the left ovary since I wasn't in menopause yet. Ha! If only I knew then what I know now, it would've been removed, too. I recovered quickly from each surgery. I think my muffin top, jiggly belly, weight gain came from menopause.



I'm so glad you are home, Cherrie! Hope you heal up fast and the compression doesn't drive you too crazy.



Mexican meal, check. Margarita, check. Happy sigh.

Anonymous

My weight wouldn't budge either, Sweet. Nothing I had done in the past would make it move. I seriously wonder if there is something that happens in our bodies that knows we are going through stress and hangs onto the weight for dear life, not knowing what comes next.

goldie4040

Sweetpickle,

I was just noticing your new pic and even though it's very tiny, has anybody ever told you that you look like Lisa Kudrow?

Jeannie57

Hi, mky! You do have a big decision to make. I have a friend in her thirties who had a prophylactic bilateral mastectomy earlier this year. She had implants put in and is very happy. She even tattooed her nipples with flowers! My friend's sister died of bc at 33 and my friend was tired of the frequent checkups she herself had to have which made her parents very anxious, too. She did have lipo after a few months to add to the implants. I would hesitate to do a job search away from home until after whatever surgery option you choose is completed and you are sure there are no complications. I doubt that could be accomplished before January, say. Insurance is a necessary thing with this! Having your parents' support is important, too. You sound like a very independent person. Seattle will be here, waiting for you! I will be waiting, too, if you ever want to meet. Will you be looking for a teaching job or something else? Blessings.

sweetpickle

Hey Goldie- Glad you made it make today safe and sound, hope you get the all clear! Thanks for the compliment, the only famous people Ive been compared to wear joan jett and pat benatar but that was when I was young and thin....lol



Bailey- Thanks for sharing with me, it helps a lot! It doesnt feel like a waterbed butmore spongy like you said. I do think my body is in cocoon mode after everything its been through. Im trying to eat healthy but Im like you and I love food, its all I have left enjoyment wise since I dont drink or smoke anymore but Im trying to be careful that I dont use food as a crutch.

mammalou

Thanks for the great pickle laugh bluebird! Then I thought someone said they were putting a banana under their bra! And I was thinking I should fill up my abdominal hole with honey. Lol. It's all good.



I feel seriously bloated. Please tell me again that this is normal at 3 months post op. I think I have gained some weight, which is depressing. I got my fitbit today. I am hoping that tracking my daily activity will motivate me to get active again. I am not very motivated to go walk or bike in the heat and with this darn abdominal binder. Uggg. I hate this thing.



So some dumb lady I work with asked me to help her on Monday and I told her her I wouldn't be there. I have a BS 6month follow up because of MRI findings and biopsy on good breast. I didn't tell her this but she makes some comment about "Another appointment!" She has made comments before and it hurts my feelings. Do people think we like going thru all this? Geez, I've been teaching for 5 weeks with a big hole in my gut and haven't said a word! People just don't understand all it takes to go thru BC and reconstruction and I guess they just want it over with. Thanks for letting me vent!



Speaking of my hole in my gut... It is getting better! It's so exciting to see improvement. I upped my protein a lot and it is healing fast. I even have one spot where skin has grown together.



One last thing. I have a hard sore spot in the upper part of my breast. I believe it is where they cut into the rib and retrieve the blood vessel to connect to. Did anyone else have this? Does it go away?

nihahi

mammalou

My husband has been laying with a rock on his forehead trying to get rid of the headache that my BC gave him 2 years ago. He refuses to take any medicine so I just let him use the rock!

nihahi

mammalou...I found some rocks on today's hike....if he needs another one!

Deb...hugs going out to you....you will ROCK the hats!!!!

sherry...CLOSURE!!!! Cannot wait to do the happy dance for you.

goldie...B9, please be B9!!!!!

bailey....you have officially become the "mother hen/guardian angel" of this thread...such a journey...so much strength. 

can't remember who asked...I'm taking 3mg of melatonin, 1/2 hour before bed...I'm starting to be able to fall asleep rather well, still wake up a few times during the night, but actually feel like I've slept/rested in the morning!!!!! You've all been busy posting today...I'm going to bed. (((((X))))

Moviemaniac

Nihahi....YOU are a woman of FEW words........



I am not even going to try and comment on the thread from earlier......I have been going a 100 mph since 7 am, and just barely sat down for the evening......my dogs are killin' me......( feet, ladies, feet).......suffice it to say.......I am glad to be home, and dressed down in casual wear.....



Welcome, you lurkers! Like Bailey said...."we see you!"......ask away........somebody on here can probably answer.....



Liefie.....come to Seattle....I will ride the train up ....:)



Okay.....will type more tomorrow.....have GOT to get to bed!



Love to all!

kuka21174923

Goldie, I just know is going to turn out to be nothing. Even the doctor thinks so.

I love the picke story.

I've spent my day making minecraft decorations for my sons birthday party tomorrow. Holy crap!! I think I got a high from the permanent market.

Got to go, between ambien, Xanax and marker I'm drifting away.......

christina0001

goldie, I'm so glad you're at least done with the test and that the nodules look benign. That is very promising! Now for the hard part: waiting.

curlylocks, ah, a mani/pedi sounds so nice!

Cherrie, welcome home!!! And to be done - whoa! that just blows my mind! Glad you are relatively comfortable at this point.

Welcome mky. Wow, tough decisions to make. I think you just have to think about it and go with what feels right to you. I am a big believer in trusting your intuition.

Bailey, I too felt fine and did not have cancer until I went to the doctor, and then I did have cancer. Hmmm... very suspicious!

Jeannie I hope you enjoyed that margarita. Mmmmm TGIF!

mommalou, people have NO CLUE that a cancer diagnosis = a million medical appointments all of the time! Maybe your co-worker would not mind carrying the diagnosis for you for a day and going to the appointment for you! Truly she is probably (blessedly) ignorant - lucky her - don't let it make you feel bad for one second. Are you serious about the rock? lol I'm just picturing my DH lying on the couch with a rock on his head...

kuka - ambien, xanax and permanent marker... I'm wondering if you are having some funky dreams tonight!

Up since 5am with nausea and heartburn. Ugh... DH and I went out with our friends, dinner and bowling, it was so much fun. We had Mongolian and it was delicious. DH drank but I did not and I am sure glad I didn't because I imagine it would only make me feel even worse right now. I only got 3 hours of sleep... This Saturday is not starting out too well for me.

Anonymous

I had a hot stone massage last night for the first time. Now there is a good stress relief use of rocks!





Thanks Nihahi ...pretty sure it takes a village of mother hens to keep up on this thread lol!



Thanks for the pictures of our healing pickle, honey and rocks. Hilarious.



Seriously Mammalou....what kind of rock does he use, why and does it work?



I know this isn't chemo thread but we help with just about anything so a few thoughts on chemo comfort. I bought a chemo bag (Target $30) which was a large faux leather briefcase type bag. I had my cancer binder in there with all my info including drug list, test results, dates of all procedures, medicines, info on each kind of chemo, also had comfort items...toothpaste toothbrush, comb, mints and gum, tissues, entertainment material, a spare pair of panties and a small sleeve of wipes, a few makeup items...plus it was big enough to drop my purse into too so I only had one thing to carry. I also had a small, cotton-knit throw for myself. There was something very comforting about having my own blanket, that smelled like my laundry, next to me during chemo.



I kept Lysol wipes in the car to wipe off the chemo bag when I got to the car and chemo blanket went directly into the wash when I got home, though!!! Lol....didn't want to bring hospital germs into the house.



The chemo bag stayed stocked and ready to go all through chemo and rads.....and for several months after, in case I needed to go to hospital quickly. And it was worth it. I had a massive heart attack (ok.....actually a grossly infected seroma in my chest but who knew? It acted like a heart attack) one morning and while I was being wheeled away to the ambulance I yelled to Joe, "grab the red cancer bag!!!" And then prayed that my last words to my DH wouldn't be "grab the red cancer bag"....LMAO....poor guy. Cancer doesn't just happen to the patient.....it happens to everybody that loves us, no?

Anonymous

Mammalou...I ran into a complainer early on ....just very sweetly said that I agree I have a lot of appointments and actually I was sick of them too...that I had thought about not going to them anymore ....but then I would probably die....which seemed like a large price to pay for skipping appts so I decided to keep going.



If some idiot actually has the balls to say something to you then, I say, you get to have the balls to say something back. Just do it ever so sweetly....put that Manuka Honey in your voice lol....or just hit them with a rock. That'll do.

sweetpickle

Mamalou- That sucks that your coworker questioned you like that, I love Baileys advice on how to handle people like that.



Bailey- How scary for you, did it feel like a heart attack? What were your symptoms? My dh has had three heart attacks and during the last one I showed up at the ER as they were getting ready to medivac him down the mountain to a bigger hospital. He was cracking jokes with everyone in the middle of a heart attack. My last words to him were dont you die! It then took me five hours to get kids from school and get down to the hospital they took him to. Scary stuff!!!