Charleston Bound, part 2

Cherrie

Downey30-I would call back and send an email before they go home for Christmas. Call Becky directly. I wouldn't let that go on.

MartyJ

Try the James Island County Park Festival of Lights.  Lots of oooos and aaahhhhhs!

PinkHeart

Had 3 drains for stage 2 bilat SGAP and LNT last Friday Dec 14 for 7 hour surgery with Dr Kline and two day hospital stay.



Dr Craigie removed drain #1 at discharge. It was drain for recipient site of Lymph Node Transfer in right axilla.



No laughin' all you RN's out there, but i'm so excited I REMOVED DRAIN #2 ALL BY MYSELF TODAY! 😊



It was in my left breast that had major flap repositioning. Could see the tubing through my skin and it was pinchy so good riddance. Dr C showed me how and I had sterile suture kit to take home.



Drain #3 is in my left groin which was the donor site for my LNT. Should come out in next day or two. Doc has me waiting until 10cc for two days this time.



Also gave myself Lovenox shots. Actually prefer drain removal and that sense of relief/freedom.



This was just my experience. Please check with your own doc regarding your individualized care.

Cherrie

Downey, did you get through to Dr. M's office regarding your drain. I've been thinking about you.

MartyJ

Pink - way to go with the drain. I could never do it. Sounds like things are coming together for you.

PinkHeart

ThNks martyj. Stomach still messed up from anesthesia, pain meds and antibiotics. Nausea.....

cascader

I agree, not sure I could pull my own drain either. Pink, sorry to hear your stomach is messed up, I guess it all just takes time. I am 2 weeks and one day past stage 2 sgap and seem to be healing well. I had a cpl of small holes open up where suture knots were but I think they are ok. My lipo bruising and discomfort has faded. However I am still soooo tired all the time. I guess I went into this surgery on the tail end of the flu so that doesn't help . My 22 yr old daughter is coming home today with her Swiss boyfriend whom I have never met, hoping that I have some energy to get me thru the holidays. We have LOTS of snow here, about 3ft and it is still coming down. I will sadly miss out on some skiing this year as I continue healing.

After my shower today I noticed that my recon breast has shrunk a bit. Not sure if it is just reduced swelling or that the fat grafting did not take and has reabsorbed but I am a little disappointed as I was so happy with my immediate results. Has anyone else experienced this so early? And doesn't it make sense that to try again in 6months the same thing would happen? I can always reduce my natural breast a little to make them match, the challenge with us uni's. Curious to hear what others have experienced regarding fat reabsorption.

Downey30

I would love to hear how the fat graphting worked for others too.  Thanks for any info.

Downey30

Cherrie, I have not spoken with her yet and this situation is starting to worry me.  It's to bad I didn't call Becky too.  I am going to make sure of what I should do tomorrow. Thanks for asking. I felt like I was in such a fog that I wasn't processing things very well.  Hope that isn't permanent. HA

PinkHeart

I had very minimal fat grafting this time.  Doc took it from outside thigh area on both sides to fill a divot between right breast and axilla.  So far it's hanging in there.  Boy are my thigh donor spots black and blue for such a small bit of lipo!   My knees were marked but not used.

Dr. K will go to town on the fat grafting to my breasts at 2b surgery in April, May, or June or whenever money tree grows.  I think the fat grafting will all come from my stomach - what little I have.  

My PT mentioned that she didn't like hearing that fat being taken from knees.  That fat in knees helpful as knees are high problem body parts when aging or injury.  Ever heard that before?

My left breast had major flap repositioning during stage 2 surgery last week, and was probably 2 cups sizes bigger that other just from surgery swelling.  The swelling has reduced dramatically.  Almost equal size after 8 days.

Those suture knots bug me, too.  Stage one I had one on butt incision that kept pulling on my undies and poking me so wound care doc removed knots.  There was another knot that was under scar that Dr. K removed in surgery - no big deal just a pesky poke that bugged me just enough to ask to get rid of it.  This time, I have new one where skin flap incision reopened for surgery in left breast.  Hope it goes away on its own this time.

Cherrie

Downey- please call or email Dr.M personally. Let her know your situation again, and that you are worried. I know I couldn't wait on this for 4 more days. You will feel relieved if you hear from here.

cascader

Downey, I agree with Cherrie, you will find much relief and less anxious after talking to your doc. You dont want to have to worry so you can enjoy the holidays. Keep us posted.

Pink, I sterilized cuticle scissors this morning and cut several suture knots down to the skin. I know they are supposed to be the kind that dissove, but sure looks like fishing line to me!

Still snowing!

jacee

Downey...do you have a helper Dr? Dr. M insisted I have one at home and she handled so many issues for me...consulting with Dr. M all along the way. Hope you get some attention soon.

Downey30

Cherrie, Cascader, and Jacee,  thanks so much for asking.  I just spoke with her and sent pics this am.  She had me pull the drain that is not working.  I now have it covered with a 4X4 for fluid collection. She said I'll take the next out in a few day and the last a few days after that.  This surgery really kicked my butt. I'm usually up a running around by now.  I am listening to my body a really taking it easy.  I always expect things to happen faster than reasonable. I'll keep in touch.  Thanks for being there.  Jamie

Cherrie

I am so glad you and Dr. M connected. You must feel much better. Happy Holidays. Let us know how you are doing!

Catie2013

MERRY CHRISTMAS, to all! Hoping 2013 brings health and joy to you and yours.



Getting geared up for my upoming Charleston re-experience and hoping the same for myself!

PinkHeart

Gma10,

Hoping you the very best in your upcoming surgery with DrKline. He has been super busy and doing Saturday surgeries. Kim, the PA, just had her baby so Chris is def busy.



I understand that Dr Allen is back in Charleston now and his name is on plate outside Dr K and Dr C remodeled office with their names though I dont think he is truly part of their practice. Dont take my word. Nonetheless, you have quite the highest expertise of docs helping you so what a Godsend for you and all bc recon patients.



Dr k decided i didnt need more hbot. Did he decide same for you?



They did more work on repositioning left breast flap and then Lymph Node Transfer that I think 7 hour surgery was enough this time so i will have major fat grafting at stage 2b when breasts have another chance to settle.



So maybe at your next stage who knows if we may meet.

Happy Holidays to you and all.

Catie2013

Pinkheart, will find out when I go in for surgery if I need more HBOT or not. New insurance company so that may be tricy anyway, even though the previous insurance company had me okayed for 10 more. We shall see. Did Dr. K. think the HBOT was a success for you? Wonder how they can tell. I am hoping mine worked wonders on my left side so the new breast will take this time.



They are doing a PAP so Dr. Allen will be assisting - hoping it is successful is my only concern. With the two of them, I'm sure it will be. Kind of crept up on me with all the holidays and famly stuff. Now it's only a week from tomorrow. Yikes.



I didn't even know Kim was expecting. I am sure they are swamped - thanks for the update. Saturday ops, wow! Must be people trying to get in before end of year for deductibles? Mine raised an extra $1,000 - hoping to get it all done in 2013 for sure. I just want to get on with being me and put this cancer/recon stuff in the back of my mind instead of so much in the forefront.



Hope you are doing well and healing nicely



Catie

LindaG47

Hey Miss Sherry Flynn,  You are up tomorrow.  Don't know if you get on the boards much, but want to wish you much success and a fast road to recovery.  Heal well and take care.  

Linda

Downey30

Hi everyone,  Hope everyone had a blessed Christmas.  Drain free today.  Makes me want to do a happy dance.  Still sore and thought I was done with pain meds but not quite yet I found. Does anyone know if there is anything to help the fat stay where it was put? Or is it just luck? 

Sherry, we will be thinking of you tomorrow.

PinkHeart

DOWNEY-



I went drain-free today, too.

Still taking pain meds though. And told to take antibiotic for couple days after last drain pulled. Good thing I'm doing my own drains because between holidays and blizzards in Indy it would have been a PITA getting into a doctor office. My oncology appt today was cancelled from our blizzard here that is probably just a dusting of snow for CASCADER.



I have same questions as you about fat grafting. I swear when i go to post op appts i am half brain dead from no sleep in hospital and being on oxycodone that i miss every other sentence my surgeon says to me.



Next week when the fog clears i will send dr k an email with questions along with post op pics.



GMA10- one question i will be asking is about the hbot and if they visually saw improvements on chest wall and tissues. I do know that the little bit of fat grafting done was not for breast enhancement but for repair around pec muscle near axilla. They still found more of that Alloderm crap adhered to chest wall over by axilla and removed it. He removed a ton of it in my stage one excavation.



DOWNEY-

Did you have drains for just extensive fat grafting or did you have flap revisions too? Supposedly (we all know to use that word loosely), i will only have extensive fat grafting at stage 2b, and wonder if i will have drains as well as the rule of no baths or swimming in pools or ocean for six weeks post op. If i schedule surgery for June, I hate to miss out on summer number three from all this BC on and on and on.

Downey30

PinkHeart,  Sorry to hear about your weather.  I'm in NC and it hasn't been bad....just some rain.  I did have a lot of work done on the left breast so that was one drain.  The other two were at the ends of my abdominal incision.  It was opened and a plication done on the muscle.  For some odd reason I ended up with more of a bulge after the diep.  I am like you at the post op appt.  I forget half of the questions and don't remember the answers to the ones I ask.  Seems the same thing happens when she call too.  I think I will make a list.  Let me know what you find out about the fat and I'll do the same.

Catie2013

Pink and Downey

I think the mind fog was the reason most of my questions weere in the form of an email to Dr K or Chris after I got back home. That way I could read their answer and then re-read their answers after a day or so, the pain meds did a number on my thinking!



I realized this week that after being diagnosed in Feb of 2012 for the second time, I reacted differently and natural breast recon is probably the reason and the focus. Before when I was diagnosed in 1994 I was afraid that cancer was going to get me. I was single and a mother of 4. Their dad died 4 years earlier. I did the chemo and rads and mostly did it without taking time off from work. Helped to work with Drs.



Almost 18 years later boom, cancer dx in opposite breast. Caught it early and on a mamogram, but after the initial decision to do a double mx my focus and thoughts have all been on the reconstruction and the mastectomies. Since my stage 1a, my focus has been on healing and how and when to do the left re-do. I have not thought much about the cancer. Has this happened to anyone? After the recon is all taken care of (I still have the stage 2 to plan) does the C word creep back or is it just a vague threat/memory?



I'm hoping its the latter but just dawned on me. I want to get back to the old but better improved me without having all the stuff going on in my head.



Just thought I'd throw that out there, sorry if it's not appropriate. I have a wonderful new (16 years) Hubby who doesn't really get it. I bring it up and he just says: It will be okay. He said that before I got dx too. I don't want to talk about it with my daughter - she could be facing the same thing some day and I won't want to sway how she thinks.



Maybe its just that in one week I go in for 1b and ramblings that go in my brain.



Hugs



Catie

MartyJ

Catie - I had my bi-lats 27 years ago (although 3 months apart) and then reconstruction (TE then silicone). I can definitely say that somehow the cancer thing moves to the back of the brain (if you want it to).  By that, it didn't seem that I dwelled on it although it was always tucked away. As I was preparing for DIEP, I had a number of people tell me they didn't even know that I had had cancer and recon.  So while this is all at the forefront right now, in 5 years we may rarely think of it as our new breasts will be totally ours.  

My DH (of 16 years) always says that your mind can be your best friend or worst enemy.  If we chose to dwell on something, it will move to the front and remain there.  After he was shot down, he simply had to choose to put pain out of his mind.  He was a prisoner of the North Vietnamese and prisoners were not exactly rushed to medical care.

Next week will bring you one more step closer to putting those thoughts behind you!  

Hugs!

PinkHeart

Catie--

I understand what you feel about talking to your daughter. I worry too about my own daughter now 17. I think she doesnt want to know anything about what Ive been going through as she is afraid of it all. My sister acts the same way too. Doesnt want to know what Im going through. And because she wont listen to me she thinks all my reconstruction surgeries are to get the best boob job possible not knowing the physical, emotional, and financial nightmare ive been through.



DH was supportive at beginning of Dx and initial surgery. Now he says absolutely nothing. My breasts are still in ugly phase and no where near final nipple stage, so he is not seeing the light at the end like Im trying to. He just sees $$$ and cant believe I will going on surgery #7 two years after diagnosis.



So ditto on not thinking about recurrence because in too much pain dealing with recon surgeries.



So when recon all over I hope to be able to put it all past and that recurrence thoughts dont come in place of my life/time being focused on recon surgeries, surgery recovery, lymphedema, PT-CLT appointments, HBOT appointments, etc. etc.



>

florafarm

Cathie and Pinkheart, re: talking to daughters about bc...my daughter is 25 and has been open to hearing the details about my dx and surgeries, but I don't think she would have wanted to at 17, so it may just be a matter of them needing to mature more. I was surprised that when I asked my daughter if she wanted to see my reconstructed breasts (after they were all healed), she said no. She has talked to her own doctors about their recommendations, and when she met Dr. Massey, she suggested she get genetic counseling, which I think she will pursue since her sister and grandmother also had bc. I told her that someday, when she has had her babies and her boobs are sagging she should just go for a double mx. and recon. the second they see anything weird. She said, she doesn't want to wait until she has an abnormal mammo, that she may pursue it prophylactic ally in the future.

PinkHeart

Floraform-

Thank you for your thoughts. I had BRCA genetic testing which was negative. The genetic consultant at Mayo said mine more difficult to determine because I have a very small family tree. Maternal grandmother did have BC. My sister was not happy I did genetic testing and I didnt tell her until after.



I'm surprised that my daughter doesnt want to know more. She plans to pursue a PhD in Biochemistry with interest in neuro-oncology. She does need more time to mature. She did agree to feel one of the tumors that was easily palpable in my fold that my gyno even missed. I know I go a little overboard having worked in health outcomes research and will probably ease up once I get past all this.



We all hope our daughters dont get BC, but at least we know they will be better informed on recon options as we all have been fortunate to have found some of the best microsurgeons in the U.S.!

cascader

I have twin daughters, now 22. They were far from home and  freshman in college on opposite sides of the coast,when I was first diagnosed. Hearing the C word is scary for all of us. My daughters will admit that they know more and have seen more of their mothers body then they would have ever thought, but now just laugh and say yes, it is normal for mom to just whip up her shirt or walk around topless while healing. lol. They just roll their eyes and laugh and know it is just the way we deal with things, not many secrets around here ! Laughter is the best medicine. Altho I do not have the BRCA gene, of course I still worry and tell them they have to be vigilant. oh, i do have to add, that they have seen the ugly side and really scary side of this also and altho that is real life, i will always worry if it has scarred them for life.

Catie2013

Marty, Thank you, I like that thought, and will guard my mind to be more positive. Sometimes it's a battle. I have had a very good run in the last 18 years and mostly the last 10 not thinking too much of cancer. Did the best to get rid of it and thought it was for good. This is a blip, maybe getting me back to smelling the roses instead of just walking past them?



But thanks!!!

Catie2013

When my daughter was 17 I was dx for the first time. She couldn't do anything for me. She wouldn't do anything. Her father died 4 years earlier, she was there when he collapsed and then died 6 weeks later of a brain abscess. Then I was a single mom, and she drove me to the surgeons office after my biopsy and the first words out of his mouth when she entered his office was that I had cancer. Not too great for such a young woman. So, I cut her slack for not being mentally there for me when I had my first run with it. But it worked out, I worked with Drs. and had very supportive co workers.



Now, she is a mother of 3 little ones, and so much more mature. Except for telling her my fears about where my mind might go after all the recon is done, she knows me about the best of anyone except my husband. She has come a long way in these 18 years. She will be staying with me for the 1 month plus that I will be in the Charleston area "just in case". I am hoping and praying for the best but preparing for some worse in case it finds me. We talked a long time today on the phone and have decided it will be good for both of us. We have talked a good bit about how she wasn't there before and how she regrets it. I told her she shouldn't have expected that much from herself, I didn't, she was hit with way too much way too early. I think she thinks this will make up for it in her mind. She was chomping at the bit to be with me for stage 1a but Hope Lodge wouldn't think too kindly of a 9, 6 and 2 year old joining us!



I too did the BRAC 1 and 2 testing. Negative as well. But, Pink, I was told it would be easier for me to do it and my insurance paid 100% because I had been dx, if my daughter had the testing it would be costlier to her because she hadn't been dx at all.



By the way, I have 8 granddaughters age 2 to 17. I need to show them a strong gma (short for gramma) just in case. Even if I don't feel that strong at times!!



I agree that 17 just needs to get a bit older.



Hugs