DIEP 2013

nihahi

Just checking in to see if there is any gbaby update from sbe....gosh...it's been busy here today!!!! I am pooped and heading to bed soon, but just wanted to agree....we ALL are amazing in what we "conquer" on our journeys. Some people may "have it easy" as some might think tx-wise, but that doesn't mean they haven't had to overcome lots of other "potholes" in life. NOTHING about bc, brac+, the post tx scans, etc. is easy. WE ARE ALL INCREDIBLE LADIES....TOWANDA TO ALL!

Bailey...I have been doing some shifts with the Red Cross, in the flood relief stuff. We've been handing out cleaning supplies, water, snacks, and hugs. One of the hardest moments for me, was when I gave some water bottles and snacks and crayons to a little kid.....he grabbed onto my leg and hung on like he was never gonna let go..... It has been both incredibly difficult and incredibly rewarding, all wrapped up into some long, hot days. I'm doing 3 more shifts this week....not sure after that, but I plan to be doing something as long as I can. I live about 20 minutes from the hardest hit area.....basically 90% of the town has been affected, some of it....now deemed unihabitable. Keep those people in your prayers for months to come. Okay.....sorry to go off topic....it's been a few emotional days.

Good luck to this weeks ladies. Keep healing to the veterans, try to find some calming moments to the ones in the "waiting room". Hugs to all.

kuka21174923

Bailey, my first language is Spanish. I came here from spain as an exchange student when I was 18. Went back to Spain for a year and then decided I wanted to live here. Started college and then met my husband, who's from here, and the rest is history! I love living here but miss my family so much. The hardest time was when my mom got diagnosed and for her surgery and everything I was here. But now that she's better she's able to come and visit me every year😄. Her cancer has always been very aggressive. Even after mastectomy it has come back 5 different times! She's had rads and has been on chemo for 10 years now!! Her sister died of BC just 5 days before she got diagnosed. I have two brothers and one sister. Out all of us, just my younger brother and me were BRCA positive. Yay!!! I don't mind to be positive if it wasn't for the fact that I might have passed it to my kids. I don't want them to have to go through the same thing. But I'm kind if glad that I tested positive. I believe there are other genes involved with cancer that doctors don't know how to test yet. So being positive means that I can work on a prevention plan. My sister is not doing anything for prevention, and I just feel that maybe she should based on our family history.

About my new car..... I got a Buick enclave. It is nice!!! I'm passing the minivan to my DH and I'm retiring from being a soccer mom! I hate driving and I don't work, so we're leaving the new car at home to keep it low on miles. My car is 9 years old and only has 59,000 miles on it. I only drive to go to the gym. Anything else I ask DH to do it for me so that I don't have to drive😄.

Is that fat grafting the same thing they do during stage 2 to add more volume? I think that's what my ps is doing on me next month. Should I tell him to inject a lot just in case my body reabsorbs the fat? It's so hard for me to have surgery with three small kids since I don't have any family here, so I'm hoping this will be my last one!

Anonymous

Bless your heart, Nihahi. I definitely have them in my prayers. I cannot imagine losing my home. We all have our own personal "hells" in life. Thank goodness for volunteers! Little boy hanging on your leg gave me a big lump in my throat.



Gnite ladies!

sbelizabeth

No baby yet.  We're all impatient, but trying to remember that birth has its own timing!  The due date is July 25 so hopefully this time next week I'll be a grandma.  

Bailey, I don't know what the procedure is called, but I think it's something similar to the Suzanne Summers video.  What radiation effects are you hoping to treat?  I have an enormous, adhesed-down scar right behind my arm, that's limiting my shoulder's range of motion.  I don't care what it looks like, but it would be great to have my shoulder function normally.

Marty, that was sweet of you to mention us chemo and rads girls.  I never looked at it as being particularly brave, or willing to fight--I think we all just keep putting one foot in front of the other, for as long as it takes.  We want to live, and we want our "normal" back, whatever that it.  

Yeah, I want another Sunday too!

kuka21174923

Goldie, thanks for the video. I just watched it. She says growing your own stem cells wasn't allowed in the USA. Is it now? I need to email my ps tomorrow and ask him about it!

Anonymous

Oops Kuka I was typing as you were posting. I imagine it is hard to be away from your family! Especially when your mother has been sick. I understand your concerns about your children. We have a genetic arrhythmia in my family. My brother passed away from it when we were kids and my sister has it. It's a long, complicated story, but we never knew if I had it or not until about 10 years ago....and therefore never knew if my kids had it. A researcher at mayo did a study on our family and was able to isolate the gene! So now we know that I don't have it (so my kids don't either) and that my sister didn't pass it to her son, either. I pray for a cure for cancer every day...maybe it will come before your babies have to worry about it...I hope so.

Moviemaniac

Wow Ladies...a talkative bunch this weekend, and the topics were so heart-felt and the emotions so genuine, I am sitting here in my hotel room crying......probably a combination of 15 hours on the road, and a tender heart over much of what was discussed here.



I am one of the women who, after getting a DCIS diagnosis (my mother had breast cancer, had a mastectomy, and is 96) in my left breast decided (actually I decided BEFORE I got the DX) to get rid of both of the girls......wasn't even entertaining the idea of recon, but BS said she would not do SX until I had at least talked to a PS about other options......I had never even HEARD of DIEP before that meeting. I had no chemo, and no rads. What I DID have, and what was not caught on either the mammo OR the MRI, was DCIS of almost the same size in the OTHER boob. I feel lucky, even after going through the SX (MX w/immediate DIEP). I almost lost one of the new girls right after surgery, so instead of 10-12 hours, it was 18, and I did not have an easy recovery (abdominal dehiscence-@8" for approx.3 weeks-NOT pretty). Would I do it all over again? Hell yes!!! In a heartbeat, AND I'm turning 59 in September! I am giving myself a tummy plication for my birthday.....I figure if anybody deserves it, it's a BC survivor....screw what anyone says, OR thinks about it! TOWANDA!!!!!



I am exhausted.....DD#4 is having perhaps a partial removal of most of her female organs.....endometriosis is out of control , and pain is her constant companion. Would sure appreciate prayers and good thoughts......she is 24 years old.......



Sending tender post-op (((hugs))) to our newest graduates, and prayers heaven-ward for those going in this week......will check in as I can, but I am not certain how this week will play out....with DD's SX......



Sending love to all, and Sbe.....hope baby watch ends soon!!!!! Nihahi???? Would LOVE to meet up.......



Marty, I am going to review your PM's to me.....but I may have a few more questions....thank YOU for being willing to share your knowledge and experience with those of us who have followed......much appreciated.....



XO



Namaste and God Bless - Jackie

goldie4040

Kuka, I can't imagine she would have been on Dr Oz showing her story if what she did was illegal.  At one time it might have been, but I believe it is a new process that is being used, but no widely used yet.

sweetpickle

Janet- Sounds like you and I are in the same boat, I had to take two vicodin today because I did to much while packing my house up to move. Ive been teary off and on today because Im so dang tired of hurting. Im trying to be miserly with my pain meds because I only have a few left and PS wont give me a refill. Im taking ibruprophin during the day and it knocks the edge off a little. My DH is stressed out and over me being needy which isnt helping me much either. I hate having to ask for help for the littlest of things. Im just dog tired but wide awake right now, know what I mean? The thought of going bqck for stage two makes me nervous as I am so over surgery pain right now.



Kuka- Congrats on your new car.



Hugs to everyone and speedy recovery vibes to all.

ssla01

Wide awake here too. Sigh...

sweetpickle

Me too Sharon

kad22

Ssla01- wide awake here also... I hear your sigh across the states!



Wow what a discussion!



Kuka I too am BRCA positive and worry about my daughter every day. My mother was diagnosed with ovarian and breast cancer when she was 40yrs old. Her twin sister was diagnosed at age 39 and passed away 3yrs later. My mother went on to live until 63 yrs old but passed from leukemia which doctors thought was most likely due from chemo. This scares me, since I was diagnosed at age 37 and had such a high dose of chemo. It must be so hard being so far from your family especially your mom- wow you are a strong women.



Typewrter- I had chemo 2 1/2 yrs ago so I went into this surgery to remove my implants that sagged below my armpits. I am 40 yrs old and doing pretty well overall recovering. Tired still 4 wks out but that could also be because I can't seem to sleep at night!



Hugs to us all for being brave strong women! Goodluck and healing thoughts to those going in this week.

mammalou

Wide awake on Cali too. Also, depressed about darn abdominal wound. Thought it was doing better but opening is bigger tonight. Am I supposed to just lay in bed 24/7 in order to get this thing to heal 😓.



Tired of this cut up scarred body.



Baily.., did your family have SAD. My brother died at 16 and nephew as a bady. SAD or long qt is suspected

sweetpickle

Mamalou- Im so sorry that you are having wound problems, I hope you are able to get it closed soon. I was a little worried about my tummy scar today because of all the swelling, it felt like I was going to pop open but so far so good.



Its four am and Im still awake...arrrrrgggggg!

Janet_M

Wide awake here too. But at least I have some excellent reading.

Anonymous

Good morning!



No, Mammalou, not Long QT or SAD. The last I knew "our" genetic defect was known only as a number. We have 5 people in the extended family who have been identified with it and all have internal defibrillator implants. My sister's has saved her life several times. My dad has one but it has never gone off. I am so sorry you lost your brother. It leaves a hole that can never be filled. My parents have been through so much with losing my brother, my sister and the constant worry about her heart and now me with ca. Fortunately they are still happy people. We are blessed in so many ways despite life's hardships.



Hope everyone has a great day! I might hit the snooze for 15 more minutes....

kuka21174923

Kad, leukemia due to chemo? I've never heard of that. Didn't know that was a possibility! That's very scary. My mom has been on chemo for so long now, although is a very low dose, just as a precaution. It doesn't make her hair fall off, but leaves her very tired and sick. She goes once a week or when she has enough energy she does a double treatment once every two weeks. I'm hoping that by the time my kids get older they will have a cure for it or something better as prevention.

Now BRCA carriers that want to have kids can have a procedure done to where they test your eggs and discard the ones that have the BRCA gene and do insemination with the good ones. Insurance pays for it, so at least if our kids are carriers they will be able to be the last generation with this gene!

Gotcha13

Hey Ladies...

Typewriterjenny - I haven't started any type of treatment regimen, no tamoxifen, chemo, rads,nothing. I meet with an Onc (Domcheck at Penn) for the first time August 5th to hear what she 's planning. I heard she's a wonderful person and focuses on the brca people. I'm excited for this next "project" in life. And jenny, your positivity is coming out in your writing now, you sound great

I don't know if I shared this yet, but last year when I found out i was brca+ i started researching on my own the prophylactic surgeries. There was no way I would repeat what my mother (ovarian c) and grandmother (bc) went through so I became proactive to the extreme and decided on the bmx with deip and ooph. At this time last year when I was cancer free according to mammo and ca125...I was ready for surgery, tummy tuck and a boob job I was happy to get, I just had to time it right for my family.

Fast forward to may2013...week of my 36th bday...i got results back from my first ever breast mri (part of preventative maintenance plan my gyn and i came up with) and they found a "little cancer" . Since I had already had an appointment set up with a breast surgeon to talk about the prophylactic surgeries...we just turned it in to my first consult being a cancer patient. I didn't sweat through the biopsy of the tumor, the sentinel node biopsy...i knew it was cancer, I just wanted it OUT. Everybody was moving too slow for me at that time.

Now I'm 13 days on the other side of a diep and I'm surprised at how fast my recovery is. I do have age, health, and my overall attitude to attribute to that.

I'm still hurtin though and I'm finishing what I think should be the last bottle of percocets. My stomach cant take it any more. I have to take 75billion in probiotics on top of Myrelax and colace for a normal movement. Not to mention the bottle of Prune Juice I finished over a weekend. Ridiculous!

My boobs ( or floobs i think you call the flaps?) at times feel like they're being pulled off by gravity and I still cant get too much support on because i have a drain left on the right one. My rfloob with the cancer is so hard still on the side,a little lumpy underneath. They tell me to wait toll it softens and drains it will be better.

My belly drains should be pulled this week i hope, their just annoying because you have to wear pants in public and I don't really have much that has been comfortable.

I'm nearly upright, the constipation has hindered that a bit i think. Because it makes it too tight when I'm bloated.

My button, which according to "the test" is pretty dam close to where it was originally and my bf agrees. But its all so tight and it looks funny, i had kind of a cute button before. Does it close up a little more?

My range in motion is pretty good on my left. I actually came home from the hospital able to shower and wash my hair all by myself

My worse complaint right now is an awful itching and pain on my sternum that continues to a little under my right boob. I put a warm compress on it and it takes the scratching urge away.



Ladies in waiting..I'm excited for you, it will all be ok. We are all strong and in control of our mind and therefore our body. Keep the light on in your attic, succumbing to negativity you feel or others throw on you will never equal good health. Acknowledge it and move on



I have said so much i'm sorry. But thank you for reading

goldie4040

I am going to brief right now, but will come back with more details later  My surgery has been postponed.  Here are findings according to my CAT scan of abdomen.  Now I need an MRI.  If they see this already, why another test?  Shouldn't they just biopsy it.  I am printing the findings below directly from the test results.

Within the abdomen and pelvis, no free air or free fluid is seen. There are 2
apparent enhancing lesions partially imaged at segment 6 of the liver, the
larger measuring 2.7 cm in size and smaller 2.2 cm in size. A 1.2 cm area of
fluid 

sweetpickle

Goldie- Oh no! So sorry, please update us when you can.

nihahi

Don't have much to add today......hope the "late night ladies" eventually got some rest. 

Those ladies who are struggling with the "recovery pain and speed"....just think back to how you were doing a week ago, or, a month ago. It is so unfair to yourself to measure your recovery against someone else's. If it is taking longer or is "harder" for you.....it means you have more "healing" to do...in many ways. Surely, by this time on this thread, we can accept the fact that we all share different experiences! Doesn't mean just "surgeon's protocols" in my book....it means the whole package. 

Relaxation techniques might also be a big help too.....it is harder for the body to heal if it is under stress. You'd be amazed at how getting a handle on the "stress" component, helps with everything else too.

Got some stuff to do today so should get off the computer and get busy....hope things go well today for all.

nihahi

goldie.....just caught your post.....sending hugs......don't panic.....

When is the MRI booked for? How did you get this news? Surely your doc has discussed stuff with you, or did you read this on your own? Regardless....(((((((((((((((X))))))))))))))))))))

damiana9

Goldie- I am so sorry you are being thrown this curveball. Hugs to you! I hope you get answers soon because I know that waiting is just terrible. Please update us when you can.



I was looking at the area on my boob that had blistered- it is now just kind of an open wound that doesn't really heal- I was taking a closer look yesterday at a part of it that is more sunken in than the rest. Well, there is a hole in there that goes......inside my boob. Like- far inside :-0 It is really freaky. I promptly covered it with a bandage because I didn't want to have to see it again because it really freaked me out. It's always something, I guess!

MartyJ

Goldie - So very sorry.  Hopefully you will have more information soon.

Damiana - You might not want to use a bandage as the adhesive can be less than friendly.  Maybe a gauze pad held in place with your bra or compression?  Is your doctor aware, if not a call might be in order.

ssla01

Praying for you Goldie! Kept us posted.

goldie4040

Okay, made all the phone calls I need to for now. I am now dealing with having more tests scheduled.  Here is how it all happened.  My hospital has a deal called "My Chart", and it is online.  You can go in there to refill scripts, make appts., and even see and read your test results.  Well, my husband was messing with it, because it is something new they signed us up for just last week, and he was reading my CAT scan.  My PS ordered it to see vessels, so that was what was in the conclusion of the results, all the rest of the findings were in the body of the text.  My PS never even saw the liver thingy, and the recommendation for further testing, He NEVER read the whole result, just the part he needed.  When I was there on Friday he even looked at the films with me, but we never read the radiologists results.  So, when brought to oncologists attention everything has changed for a while.  I am waiting for a time for my MRI, and then we take it from there.  I am so tired.

Morningsun1

Hang in there goldie. (((hugs)))

Morningsun1

damiana9, marty is correct about adhesive and letting your PS know about it.

goldie4040

No MRI with expanders in...lmaoo...Just shoot me.  Now waiting to hear what's next.  

Anonymous

Damiana - I am sure you have already called PS office and have instructions. Just know, don't panic....it is a real shock to see that deep inside, but your drain holes were the same way until they healed, most likely. I had a quarter sized opening for weeks from my port. it may heal on its own or they may excise a tiny bit around the edges and sew it up again....or some other option that I am not aware of....it I feel your freak out!



Goldie - awww hell. That's not supposed to happen. Wth? Prayers for you...keep us posted.