DIEP 2014

JerseyMomOf3

Thanks Ann, you are an inspiration! 

Great story lahela! And congrats on your great results to date.

Ahhh....the cami under the binder is so. Much. Better.

Teacher64

I've had cushioned pads on my seat belt for years because the belt crosses right over my pacemaker and it's a bother. Cheap pads from Walmart add a level of comfort when you can drive.

AnnBR

Cindy, I see you are on Femara, may I ask how you are doing on that med? I was taking Tamoxifen until they found the positive node a year and a half after my first MX, so I was switched to Femara. I've only been on it for two weeks.

brendarj

14 days to DIEP. I feel like a sponge soaking up all of your knowledge and tips. It is so much better (for me) to know kind of what to expect, even though every surgeon is different. So far hair appointment made, lift chair rental arranged, transportation in place, pro-op appointment May 29, GP appointment May 30. Still to do book hotel room, make pedi appointment  find some button up tops and, and, and

It has been 4 years since diagnoses and I am so ready for this but pretty sure it will feel very strange having breasts again. Hope everybody has a good week and gentle healing

goldie4040

Cindy, I wouldn't normally point this out, but I thought it was genius.  You managed to combine Lahela and Nihahi name into one, "Nahela."  Very pretty.  Congrats on sleeping on your tummy.  Wow!!!!!  I am just happy to be sitting with my legs stretched out in front of me. 

Lahela, you go girl!!!!! Show those girls off!!!!!  What a difference a year makes. You really had a rough ride. I have a similar issue as you did with my tummy.  It is soooo tight.  Today I am more at a 45 degree angle than a 90. Progress.

I agree with Nihahi totally on the driving.  You must be tip top.  Anything can happen.  Heck, just a couple of days before my surgery I was pulling out of my very quiet neighborhood and I had to swerve to miss hitting a neighbors dog that had gotten out of the yard.  I ended up on the in somebodies driveway and a little on their grass. But, I didn't kill a dog, thank goodness.  I hate to think of how many parts of my body would be hurting if I had to do that today.

Brenda, you are ready!!!!!  You deserve a great diep experience.  Keep us posted.  It seems you are have a "destination" diep.  Where are you going?  A lot of women are having destination dieps.  Instead of Destination Weddings, etc.  I think we should use the phrase Destination Diep.   

The1toC

Nihahi thanks for the driving 'rules'. I am 13 days out and feel as if I could drive but know I shouldn't; that checklist helps! 

Goldie I love the idea of Destination DIEP.

Not quite walking upright but almost! Pain well managed on two or three 50mg Tramadol over the day; percocet too strong for me once discharged. I tried 650mg Tylenol yesterday but not quite as good. Still in the recliner. 

I love love love the free feeling now on the radiated side. I can take a deep breath without restriction-and do so frequently. Yesterday I was giddy when I realized my new foobs jiggled! It has been a couple of years since I've jiggled. I hadn't realized I missed it.

I hope everyone's healing and recovery will go smoothly.

With help of friends to drive me, got to go to my 7&8yo spring concert at school today!

The1toC

Brenda preop nerves,nesting and need to control the things we can are pretty normal. Enjoy the pedi.

I was in windsor night befor my DIEP and found a great Joe Fresh french terry skirt in black or gray for $16 at the Loblaws. I bought a size bigger than normal and it has been really comfy to wear-commando style of course in these recovery days. You might consider taking a look if you are near one.

For anyone heading into surgery, consider a stool for your shower. Our local St. Vinnies has a medical closet and will loan out such things. They are clean and well kept. I hope most places have such a resource!

goldie4040

the1toC, glad you are feeling good.  Did you have capsular contracture from rads?  I hear that is very uncomfortable.  Did you ever get implant in, or did you live all that time with the expanders?  Did your PS by any chance explain how he released the tightness for you?  And, what procedure he used to put your pec muscles back in place. My pecs are still bothering me 2 weeks later.  I am getting discouraged.

brendarj

goldie4040 - that's right destination DIEP a whole 2 hours from home in Toronto. lol Maybe should have thought this through and done DIEP Hawaii or grand Cayman. Sound like wonderful places to heal.

The1toC will definitely check out Joe Fresh We have one in our local loblaws or maybe a little retail therapy night before surgery in Toronto sounds relaxing

now have hotel room booked. 10 minute walk from hospital

aff

Hi everyone,

I have spent the last two weeks "getting to know" all of you. I have read every post from the beginning of the year and am amazed and inspired by all of you. I started reading to make sure I didn't miss talking to my PS about anything. I never imagined I would have pages of new questions for my next consultation. I am so grateful to each of you for sharing your experiences and hope I can pay it forward.

I was diagnosed with ILC in December 2013. Due to the size of the tumor, I immediately started chemo and had my last treatment on May 2. I am scheduled for a uni MX with immediate DIEP on June 6. This will be followed by rads.

I am wondering if there is anyone else out there that can share info about rads following DIEP. I can only remember reading a couple posts regarding this.

As DIEP day draws near, I too am growing increasingly anxious.

Thank you to all for providing comfort, honesty and support along the way during this journey.

Teacher64

Nine weeks today and wearing a bra because gravity has taken over.

Janet_M

Brendarj - Wow. You sound super-ready. Button down shirts will be a godsend. But really, all you really need is a pedicure and a good surgeon.

Teacher64

First DIEP bill came today. I thought insurance would cover more. Good thing my pacemaker works well. It really made me want to move on!

AnnBR

I met with a radiation oncologist today and I am to have five weeks of radiation to 2 areas beginning June 2. This will be done at the Mayo Clinic which is 3.5 hours from home. I will be staying at Hope Lodge during the week and will come home on the weekends. We thought about having the rads done at home, but my case is unusual and I like the idea that all my records are under their umbrella and the chain won't be broken so to speak. Plus Mayo uses a technique that protects the heart and lungs that they said not all radiation oncologists use. The logistics may not be ideal, but I will be well taken care of and I won't have any regrets in the long run. It may compromise my reconstruction, but at this point I just want all cancer cells gone. My RO emphasized that the positive node would only have been found by having the DIEP and because I had that type of reconstruction my breasts will lay better for radiation. I am focused on all the positives!

MartyJ

Yeah Ann!  Sounds like a perfect attitude and really fabulous doctors.  I hope volunteers prepare home made dinners at the Hope Lodge in Rochester like they do here.

k79miller

dyvgrl...I was told not to drive until all drains had been removed.

Ann...I'm so sorry that you have to go thru all of this now.  Be sure you use lots of lotion on your new girls during radiation.  I had 28 treatments & by the time the last week rolled around I was soooo red.  My underarms cracked & oozed for almost a week. 

aff...Congrats on finishing up chemo.  The nervousness & nesting is completely normal.  I couldn't focus on anything for the last couple of weeks before surgery.  I'm almost 9 wks out now & feel great.  Before you know it you will be on the other side & recovering.

Kat-ski

Patience has been so difficult the last two years!  I am so tired of my own personal "body drama"!    I have another infection(staph) and am on doxycycline for it.  This came from the wound doctor and he also question why I was still on coumadin(which I can't take while being on this particular antibiotic).  I saw the new MO today.  He is younger than the one I was seeing and will be around for the ten years I need him to be. (The other one has retired from one cancer center and is stepping back from the other one).  Armidex is making my hip bones sore again.  The new MO suggested Prolia injection but has to submit to insurance for approval.  I understand his reasoning but am worried about the jaw effects.  He also said stopping the coumadin is a good idea because he thinks chemo drugs probably caused the clotting.  Since I am probably have Stage II in the Fall, I wonder how the surgeon will handle this issue. Any thoughts out there?  

I asked him about scans and blood work and all he said that the NCI does not recommend it because these things give false results.  So it is watch and see.  I told him how scared I was of it coming back in other places in the body.  Somehow, I have to accept this but how?  Go live in a fantasy world--can't do that.  I am just mad-plain mad!

My tummy feels like it is "burning" as does the area around the flaps. hmmn..  I don't know what to think about this.  Is it just healing?  It will be 3 months since the surgery.  Right side is slowly clearing up.  I see the NP for the first time at the Lymphadema Clinic tomorrow.  So much going on but I know there are ladies out there that are going through so much more than I.

Since is patience a virtue?  I am seeing a therapist over all of this beast!!  I know time will be my friend in the end.  I can go over and over in my head to try to find calm but it is like being on a cancer merry-go-round.  I want off!!

Ridley

Wow. This is one busy thread!  The general vibe I get is everyone seems to be doing fairly well, which is great.

Brenda - so glad you have a date (Dr H  right?). If you need anything while you are in Toronto,  don't hesitant to pm me.  I drive by UHN on my way to and from work most days.  

Ridley

Ps. - I wax my legs before vacations and surgeries - eliminatd the need to shave for a number of weeks,  I had my surgery in December and my legs only saw the inside of pjs or yoga pants for several weeks, but I felt better.  

goldie4040

Ann, I am sorry you have to go through rads after the diep, but you have an awesome attitude, and you are going to get through this with no problem. I can tell.  You have quite the adventure ahead of you being away from home for so long, but who knows, your new best friend might be at the Hope Lodge waiting to spend time with you.  Maybe she will be a walking buddy, or a shopping buddy, or go to the movies with buddy, or all of the above.

Teacher, I am sorry you medical bills are shocking.  I wouldn't pay anything just yet.  Let everything settle.  I am always surprised what else gets paid if I wait a little bit. Didn't you insurance plan let you know your maximum out of pocket for the year up front?  I knew what I was in for from the beginning, unfortunately.

Aff, welcome. There are several women who had rads after diep.  I am not sure they are around still.  Do a search and see if you can find some old posts.  As you can read, Ann is having rads after her diep.  It came as a surprise to her, but she might be able to help you some. 

tlbradyful

Jersey - welcome home! Don't skimp on the meds. You were given them because you need them. One thing my nurse stressed is to put something between the drain tubing and your skin. She said the tubing could create sores on your torso so slip a abd pad or something between your skin and the drains. I used cotton diapers (cut into strips), but the tshirt idea seems easy too. My doctor suggested wash cloths. I had cotton camisoles that had velcro pouches that held the drains. They are made by Amoena and were covered by my insurance.

Teacher - I moved to a side-ish position last night on the sofa. It was heaven. I am right there with you. It is very hard for me to get up out of a lying down position on the bed so I have been in the recliner. I just tried the sofa last night and it was a nice change. I wonder why my stomach muscles are so weak when they were not involved.

Photos - I am taking photos every week and will post at the end to help others. Someone emailed me photos before my surgery and it helped see the end results and gave me courage. Comparison is not healthy for the reasons Nihahi mentioned; each situation is different going in. It does help to see possibilities. It also helps to see that this is not to be entered into lightly. It is a big, long-term commitment, but well worth it in my opinion.

iowagirl1

Ann,  I am only 75 miles away.  If you feel like it, I could come up and go out for supper some night.  I also have an appt with the Thrombophillia clinic coming up in June.   I'll see how you are feeling.    

My surgery bills are  $159,000 so far but I was in and out of surgery for 25 hours.  So far my insurance paid all the smaller bills but the big ones are marked "pended".  I'm not worried yet as I was told I would only be responsible for my deductible.

goldie4040

My DH and I where just talking about my tummy, and the pain.  Well, more discomfort now, but anyway.....if they don't cut any muscles then why do mine feel so freaking upset?  The way it was explained to me by my PS is that they gently tease the vessel out of the muscle so the muscle is not cut, but kind of scraped up a bit.  I just don't understand why our muscles get so upset if they just cut skin and fat?  I can see a real tummy tuck where they sew your muscles back up, etc.  But, what is with the spasms I am feeling, etc?  I am trying to make sense of it. 

JerseyMomOf3

Goldie, not sure if this helps, but I started having abdominal muscle spasms right away in the hospital. I mentioned it to my PS and he said it was completely normal. I went for my first walk out side yesterday and I had little spasms all over in my abs when I returned! Sometimes mine feel like small superficial spasms, other times they feel like pregnancy contractions. I think the muscles are bruised during the surgery and they need to heal along with everything else. 

JerseyMomOf3

Tlbradyful-thanks for the tip about the drains. I have two ab drains that are very sensitive , so going commando like many of you!  The left breast drain was removed while in hospital and the right one is not draining much at all. I have my post op PS visit tomorrow so I hope he will take the rest of these out. 

I had a  Big milestone yesterday- my first outing to attend my daughters' academic awards ceremony! I wore a stretchy skirt and long sleeveless blouse over it to cover all the drains and padding, etc. then I wore a light trench coat over to further camouflage everything. I wore ballet flats and put on my makeup. DH stopped cold when he saw me all put together and said OMG I cannot believe how great you look! I needed assistance up and down stairs and held his arm to walk. I was exhausted afterwards but I did it!! I was so thrilled to be able to be there for my daughters! Today will be a day spent recovering! Tomorrow I head into NYC for my post op visit. 

Ann- so sorry you need radiation but I am so grateful they found the node and you will get the area treated. You have such a wonderful attitude and you are a true inspiration. You're in my thoughts!

AnnBR

Thanks ladies! I do plan to make new friends and make the most of my experience at Hope Lodge. It will be a new life adventure. I am grateful that I have a ton of sick leave and a job that will still be waiting for me when I'm finished.

Goldie, I've been having some sharp pains at the bottom of my rib cage and my PS thinks it's a bit of inflammation due to the pull on the internal sutures. He told me to take Advil which I started yesterday and the pain has really subsided.

Teacher64

Goldie, insurance did tell me what my expense would be and the bill I received is way beyond. I'm hoping it's a mistake and the bill was sent before insurance has paid. I will call today. It was seeing the number in the patient owes column that was a jolt.

My stomach has been the most challenge because muscle was taken. It was on the left side. I asked my dr about pain on the that side and pointed to the place, he told me that was exactly where he had to take muscle to get the veins. He said it would take longer to feel better. "Teasing" veins out of the muscle? I'm thinking my muscles don't have much of a sense of humor for that!

Today I get to go back to my trainer to work on arm strength and, when he thinks appropriate, core strength. I like my trainer as much as my PS because he got me back doing cardio safely after my latest pacemaker issue last May and helped me get full ROM between bmx and DIEP. So, here I go again. 

brendarj

WTG JerseyMomOf and WTG to your DH. I bet just the feeling of normalcy  and being there for your daughter was well worth the tiredness.

Ann - I also am sorry that you have to go through this now but it sounds like you are in the best of places for treatment.

Ridley - Thanks for the offer It's good to know that there are people close by to call on if need be and yep its Dr. H

todays question.  I have stopped the estrogen blocker and not taking any ASA but is ibuprofen okay. Sometimes my radiated side that they took the nodes out of aches

The1toC

Goldie yes I did make it to implants after BMX but the radiated side failed after 5 weeks and I went back to expander. Radiation is sometimes called the gift that keeps on giving-I progressively became more and more contracted over the TE and ,although it was not even maximally expanded, I had some fluid removed for comfort. I honestly thought my skin would tear apart over theexpander!  I did a series of Hyperbaric Oxygen treatments which is supposed to help prevent rad. Fibrosis; not sure it did anything other than suck my time.

Different PS for my DIEP 17 mos later (because that's when it was 'convenient' in my life) who told me that cutting through the fibrotic tissue was like cement! My discharge paper calls it "grade 4 capsular contracture". He did near complete capsulectomy. I do not know about pec reconstruction but thanks for the question I will ask at FUp in 5 wk.

Now released, my lymphatic channels not compressed as much and lymphedema improved 95%.

Muscles will take longer to feel better-i think 6 weeks is realistic. Think about anyone you know who had c-section which is similar just defferent location.

Goldie you WILL feel better soon. Don't be a hero about the pain meds. Take ibuprof if you are allowed and most importantly breath deeply every so often to both feed and stretch/train your pec.

The1toC

Tip for those heading into surgery: hydrate really well the day before so youur veins are nice and big for IVs

The1toC

brendarj

i was told no asa no ibu for 2 weeks prior to surg because they make you likely to bleed more since they interfere with clotting. I was able to take tylenol.

Hope that helps

Jerseymom hurray! You KNOW your daughter will always remember that you showed up!

Anne thinking of you and your constant test of your strength. Always remember the great support you have around you as well as from all of us here.