DIEP 2013

Ashira

Marty, thanks for your reply. My new patient booklet says to figure my weight in kilos and then multiply that number by two for my daily protein requirement. I must be figuring it wrong!  I realize that I probably should have posted my question on the Charleston thread, so will ask there. I still think that I must be reading or figuring wrong. I can't imagine 140 grams daily!

Jeannie57

Sharon, everything I have read says no manicures or pedicures, darn it. I have had my toes just painted in a salon but that's it. At least since my tummy fat has been removed, I can reach my toes more easily!

Goldie, I believe the nodes are usually removed (dissection) to be biopsied, but I have heard they can sometimes get results in the OR. In my case, after my lx, my bs said the nodes look great! Only to find out one SNB was cancerous. After the bmx, 2 more were found. BS took 39 nodes from that side, total, so I was at great risk. Radiation increases that risk. As for SNB, I think sometimes those first nodes are in a cluster, maybe, so they dissect and biopsy the cluster, but I am not  sure about that. I can't remember if I had BP on my arm that only had SNB removed, before LE showed up. I had a port for 7+ months so blood draws were through that. I didn't mention before that there is a surgery called lymph node transfer where lymph nodes are taken elsewhere and transferred to the underarm area, I think. I think it is done during bmx or  later, after LE has shown up. But I have heard you still have to wear compression afterwards if you had LE before the surgery. My LE is under control if I wear sleeves and do daily ldm (lymph drainage massage). I get a lot of hangnails so just wrap an antibiotic bandaid on there right away. I wear gloves to clean, cook and, of course garden.  There was a study that shows doing arm exercises with light weights, to start, helps LE or maybe helps prevent it, I can't remember. I do that and the elliptical which has the arm part to it. But if you do too much, too fast, it can worsen LE. LE is a bitch. I refuse to let it stop me from enjoying my life.

Anonymous

I usually read our own Jeannie for LE info.....you are the LYMPHEDEMANATOR, Jeannie!

But have been following the lymphedema guru on facebook for quite a while, too, here is his blog post on dos and donts for arm LE

http://www.lymphedemablog.com/2013/10/15/dos-and-donts-for-lymphedema-of-the-arm/

nihahi

Hey jeannie.....how is day one of nipples!!! Hope the discomfort from the lipo has lessened. 

goldie4040

Sharon, I wonder why no pedicures?  Well, I have been having them, and I don't plan to stop.  I can understand the manicures, that makes sense.  If that is the case, then they are saying if you are at risk for LE then you better not get a boo boo anywhere on your body.  Which is virtually impossible.  Shoot, nobody would be having their diep's, etc.

Well, wish us luck.  We are going to attempt to hang a ceiling fan.  Usually, when we try to do any home maintenance project together we get into a big fight.  It's really very amusing. The neighbors love to listen to us garden.  My father nicknamed us the Bickerson's years ago. 

Sharon1942

Jeannie, why no pedicures?  Guess I'll stop with the manicures. I liked the shellac because it lasts 2 weeks, but not worth getting LE & also risking skin cancer from the UV rays. 

Goldie, still hoping you get your DIEP sooner!

goldie4040

Sharon, we need a nice phone conversation soon, but I did change my diep to a month earlier.  I just couldn't wait till June.  I have all kinds of things that need to get done around here scheduled.  A year of neglecting home maintenance caught up with me.  New fence is going up in the next couple of weeks (weather permitting), and then got a guy to re-sod the backyard.  Then I have the carpet cleaner coming to do the whole house.  I was planning on new floors, but that can wait.  Then, the last thing on the list is painting my bedroom so I feel happier in there while I recuperate.  Phew...lol.  I got all my dental work out of the way.  I am thinking because it will be warm when I have my surgery I won't need much to wear except for a few very comfortable summer dresses. 

I guess our days of manicures are over.  But, I am sorry, it is getting harder and harder to see my toes to do them...lol. I am not giving up pedicures. 

FierceBluebird

Goldie, you and I have similar mindsets. I am determined to get my house back on track after 14 months of neglect and hubby and two teens living the dorm room life without mom nagging them to clean up. But it's exhausting to think about all the work needing done!

Anonymous

Blue I've been in the same mode! I've been back on track for a long while on the main floors.....but the basement....oh my....it's where we shoved anything we didn't want to deal with for a few years....I need my office back! I need a place to work on some big projects for Thing 1's Eagle party and H.S. graduation party.

Happy cleaning and organizing!

nihahi

goldie....congrats on getting an "earlier" date. You mentioned you had asked, didn't know it had happened! So when is THE day??

May is a lovely month to finally get where you want to be....as in "MAY" this all finally get sorted out!!. When are you flying to visit BIL??

goldie4040

I am glad I am not the only one whose home has become something I don't recognize.  It's not all that bad, but I was a crazy person when it came to cleaning.  My husband thinks running the vacuum is cleaning...lol.  Yes, dear, that's part of it, but there is soooo much more.  Most women do it all day long without even thinking about it. Bailey, my son's old room has become our dumping ground. I had made it into such a nice guest room, now it's a guest to our overflow.  We don't have basements in Texas. Something about the soil. 

Bluebird, housework (not to strenuous) is great rehab! I remember a few weeks after my bmx I was folding laundry, and could really feel it in my arms and shoulders. It wasn't anything I ever thought about before, but there it was.  Regular chores becoming part of my recovery.

Nihani, I spoke to Kuka a few days ago, and she moved it to early May. I should have written it down.  Either 5th or 6th.  I will get it pinned down. Pretty sure it's the 6th. I have a friend of a friend who I referred to my surgeon, and she is having her surgery around the same time. I will have a recuperation buddy!  She has been without breasts a long time.  She is very excited about finally having her diep.

Morningsun1

nihahi, I have all kinds of scars, barely visible fine lines, raised hypertrophic, and keloids. All of them are one year old. When I saw him at my pre-op visit, ps said I have the option of starting steroid injection right away or wait and see if it will heal better on its own. The treatment will be injection every 6 weeks for 6 months. Not sure which way I should go. 

Some good news, the numbness in tummy skin is almost all gone. Not sure if it's the time or the essential oil use I just started 4 weeks ago.

nihahi

tammy....if it were me, I'd try the injections in the keloids. (and I HATE needles). Are you going to be in compression over the hypertrophic areas after your revision? That "might" help those areas, but if you are a year out, might not be that much of a difference. If the steroids make a difference with the keloids, then I'd say go for it in the hypertrophic areas too. (but then, I'm not the one getting the shots, either). 

I picked up some of the ScarAway silicone pads while in the states. I'm experimenting with them. I started before our recent holiday, and I think (maybe) I could see a difference, but I stopped using them while in Arizona. Just started again yesterday....I'll post how it goes. My scars aren't bad, certainly "liveable", but, I'm curious to see if the silicone will make a difference. I didn't find the silicone gel made much difference, and I used that in a "controlled" way....on some areas, not on others. Couldn't tell any benefit after a couple months.

That's interesting on the essential oil....I don't know much about that....what kind are you using???

lahela

Goldie, so, so, so cool that you'll have a recuperation buddy!!!!! That's really awesome!

Tammy, you've inspired me to pick up some bio oil tomorrow. My numb tummy drives me nuts!

OT... Why on earth, when I have no freakin' ovaries, am I experiencing abdominal pain and SPOTTING????????? *sigh*  I'll call my GYN in the morning. I was really looking forward to a week without doctors!

Jeannie57

Wow, Nihahi, everyone is different. The silicone gel took a lot of the purple away from my ab scar and also from my road rash scar.

I don't know why no pedicures other than the tubs or instruments could possibly  have bacteria and any cuts or whatever from the pedicure would be a pathway to that bacteria. With a compromised lymph system, that could cause problems, I guess. It is a total body system. I have not heard of lymph nodes re growing, don't know about that. I had DIEP after I was diagnosed with LE. My arms were actually smaller afterwards--I wore my sleeves in the hospital. After stage II, my arms swelled but not too badly. You just have to weigh what you do, the risks involved and make wise decisions.

Anonymous

Lahela....are you sure of where the blood is coming from....lots of possibilities in that general direction, ya know what I mean? A urinary tract infection or kidney infection could cause abdo pain and spotting. So sorry. You've sure been through enough already. Hugs!!!

nihahi

lahela....GOOD GRIEF GIRL!!!!!!! Hope it's sorted out easily and quickly. I'm not sure if bio-oil is the same thing as the essential oil that tammy is referring to. Movie might know, as she has some "oil experience". If you have any allergies to plants, you might want to check the ingredients in the bio-oil....I got a rash from it, and it has a lot of plant based extract in it. But, others have found it to be a lovely product.

jeannie..you are so awesome with how you're "warrior-ing" on with the lympha stuff. My hat is off to you, girl. 

Yep, different is the "new normal" eh? I'm thinking maybe the gel just eventually wore off during the day, and with the strips, the "contact" is constant? With the strips, there is a wee bit of constant pressure too. 

Dyvgrl

lahela,

If you kept your cervix you can still have regular periods although they should be much lighter or just be periods of spotting. I chose to have everything removed when I had my hyster / ooph. Uterus, ovaries, tubes, cervix - and fortunately there was no cancer, but lots of other issues so I'm very happy so far. It's only been 3 weeks so not a fan of the night sweats and hot flashes but I'll take that over the monthly drama I was dealing with before. Still worth a call to your gyno...

kelleyb

Hi friends, I haven't posted because I have felt super crummy and didn't want to discourage anyone with my complaints, but have been following all your posts this week and am praying for those about to have procedures, having scary symptoms and others not feeling well.   

Overall I'm doing fine.  My main complaints are a lot of pain and burning along the tummy incision, fatigue and a yeast infection.  The first week home I had to take the norco because I was in a lot of pain, so I ended up sleeping a lot.  My breasts look good, the swelling on the right breast has come down a lot in the last couple of days so it's more comfortable now.

Like Jeannie, I could write volumes on my experience with lymphedema.  I've got it in my left arm, hand and trunk.  I agree with all Jeannie wrote and would add that, yes, flying does tend to encourage swelling in my arm so I do wear a sleeve and glove when traveling.  My PS removed a lot of scar tissue on the left side during my DIEP in January and I feel like it was helpful to a degree.  It's probably too early to tell.  LE is very real and nothing to mess with, though I think an occasional manicure and pedicure is fine with precautions.

Hugs to all.

nihahi

kelley...so good to hear from you. Glad to hear you're home, and it sounds like stuff got taken care of with the ab issues. Rest, hydrate, eat protein...hang in there. Sorry to hear about the yeast infection....bummer.

FierceBluebird

kelly, rest up and I have one word to say...Diflucan!  I get yeast infections when I'm on antibiotics for a long time. Even with eating yogurt and probiotics. Diblucan is a miracle drug for me. One day and I'm all better. Hope you feel better soon.

lahela, I hope you also feel better soon. Maybe an internal stitch or something. 

Bailey, my basement could make an episode of hoarders. My husband saves everything! 

Tammy what is the essential oil your using? I just started using pure rose hip oil for my radiation skin and it seems to be helping my scars also. But no feeling back yet.

Anonymous

Hahaha, Blue, I was always saying the basement was one pile short of a hoard. My DH is a "saver", too. Boxes....we have to save the boxes for everything. I work for a BOX MANUFACTURER for crying out loud....I can bring home any size box we need. Drives me crazy!

goldie4040

I agree, Bluebird. Diflucan is a miracle drug.  No fuss, no muss.  Takes a day, or two to kick in, but it always works.

It's been really cold here, and I have been trying to walk everyday anyway.  I hate the feeling towards the end of the walk.  My face is freezing, but I can feel my body (under my layers of clothes) burning up.  A combination of hot and cold.  I have never been a skier, but I imagine they get a similar feeling.  Normally, when it got this cold I would blow off the walks, but I am bound and determined to make them part of life, like breathing, and going to the bathroom. I will not be able to live without them. Nihani, you are a pro at walking in the cold.  Any tips?

nihahi

OMG bailey....my hubby is a box hoarder too! Makes for some tense discussions since we moved to the condo!!! 

goldie....you do make me chuckle! Good for you for sticking with the walks....it will soon become a habit you "need" to feed! 

Since we seem to have about 9 months of winter up here, I have spent a whoooollllle lot of time in the cold, being active. You mentioned you're wearing layers....and that's the trick. Start out layered up.....but when you start to warm up, you HAVE to take some layers off, before you start to sweat. If you get too cool....layer up again. Try to wear "wicking" fabrics next to your skin too. Lots of athletic clothes now are labelled as "dri-fit" or "cool max", they keep you comfortable even if you start to sweat. Good luck girl....keep it up!!!! I know I'm going to regret asking, but.........."how cold is it?"

goldie4040

Nihani, to you this is spring temps, but to me it is cold.  20's to 40's depending on the day. We are not prepared down here.  Most people don't even own a winter coat.  I always do in case I have to take a trip back east. 

Interesting story the MRI tech told me the other day about the new athletic wear fabrics. Some of them have antibacterial agents built into them that is made out of silver. They tell people if they don't want to change into a gown to wear clothing with no metal on them like sweats, etc.  Well, lately they have been having very weird blurred images when doing the CAT and MRI. It turns out it has been this silver agent in the athletic wear. The subject came up because I was out and about before my appointment and I had jeans on, but I brought a pair of pajama pants to change into, and she was glad they weren't those new kind of sweats.  Also, some the new very fancy washing machines have an antibacterial setting that adds silver to the rinse water.  It just adds to all the questions they have to ask people now when they go for scans.

nihahi

interesting about the fabric and the MRI issues! I've never found the "silver" really does what it is touted to do, which is make athletic wear less "stinky". No comment on your temps, but I do understand. I lived in Miami for a few years.....could never understand what people were moaning about when the weather got less than tropical, but, it's all what you're used to!

GwennyMD

Hi ladies

Trying to catch up with everyone.  I have been too busy to keep up with boards.

My stage 2 is Friday, Feb 14 so I am running around trying to get ready.  It still amazes me on how different our surgical instructions and post op treatment are.  I do not have to increase protein or chug gross liquid before surgery.  For DIEP, I did not have to worry about a dirty bra in the hospital because I was not allowed to wear one.  I was braless for 2 weeks.  I was not put in a compression garment because my PS feels they increase potential for blood clots.  I was allowed to wear light compression after my stomach healed.  My dog ears get irritated so I like to wear spanx type camisoles or control top pantyhose under work clothes.

For stage 2 we have agreed to flatten dog ears, lift foobs, and fill in major depression across top of one foob with more tummy fat. I still have plenty. 

Kelley and Lahela - healing prayers for both

Please stop talking about basements and guest rooms.  I live alone and have noone else to blame. lol

sbelizabeth

Good morning, gloobsters!  Sorry I’ve been MIA for a few days—Saturday was my mom’s 90^th birthday and last Thursday we drove to Phoenix to celebrate. We just got back last night, exhausted and road-weary. 

RHG, glad to hear the chemo dates just keep marching along. It will be over before you know it.

Tammy, I had a friend develop a keloid scar after heart surgery and steroid injections really helped. He said the injections were fairly painful, but worth it. 

Jeannie, thanks for all the insight into the LE issues. I had many, many nodes removed from under my left arm, and so far, no big LE issues. I had some truncal LE before the DIEP, but even that has subsided. I’m VERY careful, though, to avoid BPs and blood draws and even little punctures around the house. With my experience with cellulitis, I’m gunshy!

I was told no pedicures only when I was on chemo.  My MO wanted to strictly limit my exposure to anything that might cause infection, with my immune system so compromised. No chemo now, and I do pedicures about every 6 weeks. 

In Colorado, a basement was where you threw something you didn’t know what t do with. Just open the door and toss it down the stairs.  Easy peasy.  In California, almost no one has a basement, so our garages tend to turn into junk holes.

Have a great Monday, everyone!

nihahi

crap crap crap......just got a phone call, my PS can't make the appointment today, so I have to reschedule!!!!! I am now committed to some Red Cross stuff for the next three weeks, so I can't book anything until early March. Although I accept things happen..... I am so disappointed.

mammalou

hi ladies,  I just spent a week at camp with 6th graders.  I hiked around in the snow teaching them.  I am so glad to be home!!!!! 

I was in an LE surveillance study and they told me not to "cut" cuticles on toes and nails forever.  I do get pedicures, but I just tell them no cutting.  

I have appt with PS to schedule nips this week and I'm excited.  If I could clean up some of these hypertrophic/keloid scars, I would be a very happy camper. I may try the steroid shots, but I think I need to wait until PS is done before putting steroids in there.  I am wearing a silicone strip and I definitely see changes so I'll keep that up for awhile.

I see liver doc tomorrow for chronic elevated enzymes, so wish me luck.  I'm hoping it is from Tamoxifen because the other possibility is scaring me.