DIEP 2013

goldie4040

Mapbb, I don't know anything about the hotels in NOLA, but I bet Marty will chime in soon.  As far as sitting that long in a car, I would ask your docs, and I bet they say it will be okay if you stop and get out often to walk around.  Good luck.  You have made the right decision.

christina0001

ssla  congrats on being drain free!!! such a wonderful feeling!

tracy, sorry you are not feeling well. not being able to sleep is the WORST, it just makes everything that much harder. I restarted taking melatonin during all this and I think it has helped a little but I am not sleeping real well either. Hate it!

sbelizabeth - WOW at the before and after pics! I can't believe you rode your bike through chemo. You are amazing!

sweetpickle - I do hope you are feeling better. Breast cancer is so evil, it steals so much of what makes us feel womanly and beautiful. It's so hard to keep it from making us feel bad. For me the bad days still often outweigh the good, but as my hair grows in, as I am slowly losing the weight (I gained 20 lbs during all my treatments), and now that I have two breasts again, I am slowly starting to feel like ME again.

Sherry, I'm so glad you are finally back at home. I hope they found a different nurse for you; maybe even a different home health agency for you if that is what needs to be done. You should never have to accept care from someone you are not comfortable with. A wound vac is something not every nurse is knowledgeable of and you want one that knows what she is doing, plus will treat you good! Yes, take an ativan if it will help, you have been through so much and being nervous is understandable.

Well late yesterday afternoon I started having this sharp, fairly frequent pain on the underside of my new breast. It is very sharp sometimes, sharp enough where if it catches me off guard I will say OW!!! It's been going on all night and this morning too. DH is very worried and made me leave a message this morning for PS. I'm 20 days out - I should be safe from anything too catastrophic, right? I have been taking it easy but DH is wondering if maybe I lifted something yesterday that was a little heavier than I should have. I'm wondering if it's just normal healing pain. I see my PS on Wednesday but it is still a little scary. My new breast looks fabulous otherwise, absolutely no sign of infection that I can see. Any thoughts on this ladies? I could use some reassurance.

MartyJ

MAPBB - Hi there!  I would suggest that you pose this question on this thread - Nola in September.  You will get lots of practical answers.  I am so glad Dr. M was able to get you in so quickly.  You will be very happy.

http://community.breastcancer.org/forum/44/topic/736412?page=814#idx_24411

If you stay at Hope Lodge, you will need a caregiver with you the entire time you are there.  They stay in the same room that you occupy.  I believe it is one of their rules.  Actually, you need someone with you even if you are in a hotel.  It is just good sense as help is required the first few days out of the hospital.  That might effect your driving yourself down, unless your husband and son can work out a schedule to be with you.

Flying will be a cinch as there are so many non-stop flights between NOLA and Chicago.  Driving will work well, too.  You will simply need hourly stops to walk around.  Bring a few pillows in the car or on the plane to place between your body and the seatbelts to feel more comfy.  A friend gave me two 6" wide strips of foam to use whenever I was in a car during the first few weeks.

You are going to do great!

liefie

Sherry, glad you're home again. I would also be upset and afraid if they send that same nurse. Dig in your heels, sister!

Sweetpickle, there's nothing like a little sprucing up to make you feel better. No guilty feelings - you've come through enough, and we need every bit of encouragement that we can muster, eh? Sometimes when I feel low, it is amazing how much better I feel after a nice (hot!) shower, clean hair, nice clothes, earrings, and a little make-up. Go for it, I say!

Anonymous

This is my chemo picture (bandana and baseball cap) lol....the weekend I started learning to rock climb!

sbelizabeth

Yay, Bailey!!!  And I love the shirt--it's Jackie on a bicycle, in my favorite color, lime green. 

Life is good, indeed.  You're beautiful.

hrf

I am going home tomorrow morning although could go this afternoon too. Finally getting in and out of bed by myself and able to walk down the hall. Of course I need a nap after all that. My sister will stay with me for a few days when I get home and if I need more help I can hire a psw. But doctors here are saying people don't usually need that degree of support. I live in a large city so there would be no problem in getting someone quickly or if necessary rent some equipment like a recliner. for now though I need a nap.

Anonymous

HRF glad your sister will be with you the first couple of days...you should be ok after that, barring something unusual, as long as she moves anything you can't reach! Rest well, sister!

ThAnks Sbel, I love green, too!

goldie4040

It is so nice to put names to faces.  Thank you SBE, and Bailey for posting your pics.  It gives so many women the courage, and strength to go on. They can see how strong, and beautiful you both are, and that chemo, rads, mx's are not the end of the world.  I know it has helped me.  Today I got up, did my yoga, and my total gym as best I could. Then I called and got into with the Cable company. I have been putting that call off for weeks.   TOWANDA!  Sometimes seeing is believing.  The written word is a wonderful thing, but a picture is worth a million words. (haven't I heard that somewhere before...lol)

HRF, glad you are going home, and sooo glad your sister will be there with you. My friend had a music teacher when he was growing up that said something that has stuck with me all my life, and it's true.  He said, "fast is slow, and slow is fast."  Meaning if you take your time, and don't rush you will learn it faster, make less mistakes, and that statement crosses over to healing yourself.  Take your time.  Don't rush.  Do as much as you can without pain, and everyday will get better. One, or two more days of resting in the reclincer could mean no open wounds, etc.  Take it easy. Keep us posted.

hrf

Goldie and bailey. Thanks so much. I haven't actually taken a full frontal look at everything. Think I'll wait till I get home. I know it won't look pretty at the beginning but just not sure I'm ready for the whole thing. Also my belly button looks a little high but maybe this is normal. I had rolls on my abdomen before as a result of 3 kids etc. I can tell I'm swollen just because my fingers are a little swollen too. Did any of you have small parts of the flap that didn't take? Mostly I'm good and the blood flow is fine. There's just a small bruised area on one flap that is farthest away from the blood supply. Doctor says she's not overly concerned with it.

FierceBluebird

Wow. You ladies are an inspiration! Bike riding, rock climbing... there is nothing you can't accomplish! And I was feeling proud of myself for walking everyday through chemo. It seemed like climbing Mt. Everest on some days.

sbe, that trail you were on with your bike looks brutal! Your hair growth in a year is wonderful! Last night I was going through my wallet and saw my driver's license. First I was sad when I saw my hair in the photo. My next thought was, "I had boring hair!" I'm starting to like my crazy chemo curls which stand up at all angles. The Billy Idol look! Just need the sneer to go with it.  LOL

Thanks for the liver ideas. Will be heading out to store tonight to see if I can actually go through with buying it! *shudder*

hrf, glad to hear you are doing well! Take it slow and easy as goldie said.

Bailey, the chickens are all flapping hello to the flapper girls!

sweetpickle

Hrf, I did and I still have one spot that is healing but its filling in nicely. You will be amazed how much changes the first month in regards to healing. I kept silverdene on my bad spots.

sbelizabeth

Bluebird, the trail wasn't brutal in the least--it was very wide, with a gentle slope and a hoot of a downhill cruise.  What you're seeing is the bank leading up to the tree where I leaned my bike.  And you SHOULD feel proud that you walked every day--that's essentially what I did.  A gentle bike ride is no harder than a gentle stroll.

I really dug my chemo curls.  I've never had anything but bone-straight hair and the curls were fun to mess with, ala Billy Joel.  But they faded into post-chemo normalness, just like the funny taste in my mouth, the dark stripes on my toenails, and my compulsive use of antiseptic hand gel. 

Hrf, I had a spot that was bruised and turned into a blister about the size of a silver dollar.  The PS drained it and had me dress the "hole" with silvadene.  It healed up well within a couple of weeks.  I think many of us have had the same experience.   

Gosh, this day is going slow.  Will Monday never end?

MartyJ

Just thinking about SBE's cellulitis story. (those photos of you are fabulous, BTW).  Several people suggested strongly to me that I do my mani/pedi several days before surgery and that I not shave my legs the day of or the day before.  By doing it earlier it allows the little microscopic nicks time to heal as a further preventative measure against cellulitis.  I know, if you are like me, we all think we have to shave at the last minute so no one will be offenced by hairy legs or underarms.  I promise they won't be offenced and you will be a whole lot happier to avoid a cellulitis risk.

christina0001

hrf, glad you are getting around a little better, and that your sister will be able to help out. That's great news!

I called PS's office about the sharp pain I started having yesterday under my new breast. I was told that it sounds like very normal nerve pain; a nerve is probably trying to regrow or heal. Right after they called me back, I started having a similar type of pain but worse on my lower left side, a couple of inches above my thigh. My pain meds aren't even touching it. I don't know if it is also nerve pain, or a muscle spasm, or maybe something even totally unrelated. All I know is, I'm staying on the couch and trying to not aggrevate it! Glad that I threw dinner together in the crock pot this morning.

I hope everyone who has had their surgery is healing well... and those who are waiting, are not too anxious.

goldie4040

Marty, that is funny.  I do the same thing.  I never shave my legs for a least a day, or two before a pedicure.  I have a neighbor who ended up in the hospital, almost died, because she shaved the day she and her family went to the lake.  She had such a bad systmeic infection her kidney's shut down, etc.  Thank God she made it through, but she was a very sick girl for a long time, and they believe nobody else go sick but her because she had shaved that morning.  The lakes in Texas are notorious for carrying diseases the hotter it gets.  I never go in them..ugh. 

When are Movie and Nihani supposed to get back?  I thought they were just going for a weekend. 

HRF, are you home?

Gotcha13

Jeanie ... I totally remember that day..or reading that page I guess. So Wilbur it is And i totally think you guys should make a T-shirt!



Bailey, thanks for asking I feel good, actually great for now. I'm not on any drugs anymore either I star chemo 9/4 and I'm just not looking forward to being sick. I've been riding on this wave of excitement about my new body and now I'm just prepping for a crash. I've seen so much sickness involving chemo and it's hard to block those memories out. I'm a very positive person overall and this has been a real struggle to stay that way.



I had my first follow up with my PS today and she is AWESOME so is her "pit crew" she calls them. If you know anyone in Philly or the tri- state areea for that matter DO recommend UPenn for they're cancer surgery and treatment. I picked this team of female surgeons that really created a masterpiece and have had tons of support available. I'm brca+ and they have this whole research program in place for us. My onco is awesome too so far. And they have a wig shop right there in the cancer center (how smart were they!?)

And today after the follow up I stopped in there. It's called the Faith & Hope Boutique and I had a very pleasant visit. One of the owners were there and took the time to help us try on some wigs (me and the boyfriend) well, I tried them and he critiqued She was so sweet and down to earth and found a few of just about the perfect wigs for me. I felt a little better leaving there today

My bf also purchased a set of nipples for me while we were there. Almost as a novelty yaknow because it's been nice not having to wear a bra. But, I put them on when I got home and it actually looks really cool. The nipples are really pronounced but it made me feel slightly more normal looking. You definitly cant wear a Tshirt with them...unless I guess you like to have your high beams on all he time.

*** Which makes me wonder.....After nipple recon, are they always gonna be "on"?



Oh, and i'm just throwin this out there. My PS reccomends doing the nipple recon with the 3D tatooing, she said they come out much better than the standard tatooing and with the real nipple to boot they look great.



I got my babble out. Thank you for reading

hrf

Sbe, you seem like a very adventurous woman. Glad you are enjoying yourself.



So what is silveredene? I have never heard of it. It is reassuring to know that others had this same issue and it turned out just fine. I will try to remember to ask the doctor tomorrow morning before I go home. I will be very happy to be back at home.

sherry35

Ok so you ladies are going to start thinking I'm making this shit up, but I kid you not. I dug in my heels last night to get a new nurse today. I get up this morning to my vac beeping and saying tubing kinked. So we fix it and away we go. This happens 5 times in about 20 minutes. I call health care provider who calls nurse. The nurse calls me and says just shut it off, it needs to be changed, I will be there in about an hour.

So she shows up almost 2 hours later, I explain my situation and ask for something to assure me that she has changed a vac dressing before. All she wants is to try and figure out what nurse I'm complaining about.

Anyway we get set up and she goes to work and changes dressing- hurts like hell putting a dry sponge in your gut. She hooks the vac up and..... It won't work. I'm not kidding. We call find out she's lost some graumet for it and it won't engage. I call surgeon and she calls her supervisor.

I have to lie down on couch and have her pull up all the tape again, remove a dry dressing and then let her repack it with a traditional dressing!

I ask for instructions for this dressing and she tells me there really aren't any except don't take it off.

I'm exhausted. I'm frustrated and I'm a bit pissy! Sorry for that. I will try to get through the evening without something else happening! Grrrrrrr!

FierceBluebird

Gotcha, sounds like you're doing great! I wish I could have had surgery first and time to heal before chemo. Having chemo before surgery kicks your butt and it's hard to heal.

hrf, Silvadene is an antimicrobial burn cream. It's pretty standard after surgery if there are any blisters or burns like I had.

Sherry, you poor thing! I totally sympathize with you. I've been having so many wound problems, I feel like people must think I'm making this crap up. We must just be the extra "lucky" ones!  Hang in there. Hoping your night goes better.

hrf

Sherry, I'm sorry that this is happening. I had thought that by now you'd be all clear. You did the right thing. Sometimes you just have to do what is right for you.



Tracey, Typewriter.....how are the 2 of you doing?

goldie4040

Sherry, I am so sorry.  This is what I went through with my MIL and the nurses that came to her.  They probably thought I was a horrible shrew, but I couldn't take it anymore.  I would call up there and yell at them several times a week.  Wound care is a specialty that needs to be done by someone that knows what they are doing.  I finally started taking her several times a week to the wound care doc myself because I couldn't get her good care at home.  She had PAD (peripheral artery disease) and she would get wounds on her legs like a diabetic.  It was awful.  I am so frustrated for you.

mammalou

Christina... I have pain under both breasts that started around them. I am now almost 8 weeks and pain is. It really improving. I also have hypersensitivity of the skin there, so I am thinking it is nerve pain.



So, tomorrow I'm going in to get this wound looked at again. I just know they are are to cut it wider because I have a tunnel that goes from the big wound to the small one next to it. Today the small one broke open because there is nothing under it because of the tunnel. I swear I am going to cry if they make this thing bigger!

sweetpickle

Mamalou- So sorry, I can only imagine how frustrated you must be with it all.



Christina- Yep, sounds like what I get too. Ive been doing pretty good these last two weeks but last nigt a nerve went off on me and I was in tears. DH actually massaged the joint where my arm attaches to my shoulder on that side and thd pain subsided. I also took for advil so it may have been that too. I will be twelve weeks post op this coming friday. Keepz massagin your chest, it will help with the nerve pain and the sensitivity.



Sherry- Eek that sucks! I hope you get a better nurse that know what they are doing.

Curlylocks

Sherry - A wound vac works wonders and will close up a wound within a few weeks. The key is having it on and working 24/7. If I can recall (my sister had one of these)... The pad thingys have to be changed fairly often and the area kept sterile.



I too live in Ontario and know that there are some good home health care services with competent PSW's and there are also some not some competent ones!



Did they indicate when they would be coming back with the part to get the machine working? I would push them everyday to have it fixed. I know up until my sister had this wound vac...her healing was extremely slow...she had her mascetomy incision packed for 3.5 months...the wound vac sped it up greatly - it healed with 2.5 weeks of using it.



My breast surgeon and plastic surgeon consult is tomorrow...I am nervous...this is all becoming very real now! I have my huge list of questions for both bs and ps. My hubby is coming to the appts with me, love my guy!



Hugs to the ladies just newly out of surgery...



Michele

Anonymous

Gotcha-staying positive can be hard to muster...especially when you have already faced a major surgery and now have tx to face....and recovery from all of it....but being positive was a powerful "weapon", for me, anyway.



I just read this quote recently, “A sense of humor... is needed armor. Joy in one's heart and some laughter on one's lips is a sign that the person down deep has a pretty good grasp of life" ~ Hugh Sidey.



Amen.

goldie4040

Oh Mammlou,

I hope that things get better soon.  Hopefully, they will not make the wound bigger. I am keeping you in my prayers for this to resolve quickly.

Sherry, you too.  Things will get better.

Tomorrow I am having lunch with a woman named Sharon that I met on this forum.  She, and I share the same PS, except she is heading towards stage 2 soon, and I haven't even started yet.  But, it will be fun to meet another BC survivor sister.  We are meeting at a favorite local spot in our area, and my BFF is going to join us. 

The pain from my expanders subsides after about a week.  I am not saying iron bra is gone, just the real pain.  I feel like the Little Engine that Could.  I keep repeating to myself, "you can do this, you can do this." 

Looks like Kuka disappeared.  I wonder if it's because she is all done, and moving on, or God forbid, something is wrong. 

Damiana, are you okay after your stage 1b?

goldie4040

Sweetpickle,

I keep forgetting you had your mx at the same time as reconstruction.  My bmx alone was hard, but with the diep, it's got to be really hard.  I had all kinds of nerve pains from my bmx.  Nothing unsual. If it makes you feel any better, it is so much better around week 5.  Did they give you ROM exercises to do, if so do them!!!!  It helps so much.  It's been four months, and every day I still am amazed at what I can do today that I couldn't do last week.  I can do a plank again, and downward dog.  I stretch in the morning without thinking about it.  It all gets normal again.  Baby steps. But keep moving.

liefie

Sherry, what you have to put up with is so exasperating - it does sound like fiction, if only it was . . . don't give up, it has to change.

Mammalou, hope your issues get resolved soon. Enough already!

Goldie, enjoy your lunch tomorrow. It is always so nice to meet up with someone from these boards.

sweetpickle

Goldie- Hope you have a great time at lunch. My ROM is pretty good now and yes I was given exercises to do to help with that. Im feeling pretty good most of the time now, end of the day is hard and getting up from a seated position when Ive been sitting for a while is hard. Takes me a minute to get going once I stand.