Charleston Bound, part 2

GointoCarolina

Pinkheart,I am so happy that you are in Charleston..you are on the way up!!!I had to email Dr.Kline.I have a lot of swelling on the failed flap side..the non cancer side...it goes down my side and a little around the back,big puff under the arm.It is better in the morning but gets more swollen during the day...I am terrified that it is lymphadema....my little surgical bra feels tight at the bottom,so maybe I will need to take it off sooner than 8 weeks..it is 6 weeks today.My husband is going to take pictures when he gets home to send to Dr.Kline.

cascader

GTC, I am so sorry that you are having a difficult time of things, but each day should get easier and better. I am glad you are sharing on here.  It took me at least 6 weeks to start feeling my energy come back. For me, it was very much a mental attitude as well as physical, I needed to allow myself to rest and heal,(not easy for any of us) to give my body what it needed, good nutrition, fresh air, and slow walking sometimes just a few minutes a day. I continued to listen to healing meditation tapes everyday for a very long time, I usually fell asleep listening lol, but took it all in subconsciously. Be kind to yourself,your body is truly wondrous in how it heals and letting you know what it needs.

After my first attempt at reconstruction failed I too was devastated. I did not want to even think about what's next, I couldn't imagine trying again nor be financially able to. It took time for me to mentally adjust, I was angry and disappointed.  Fast forward one year and I was obsessively researching and found myself in Dr Kline's office for a consult. Only you will know what is right for you, there is no right or wrong decision and certainly no time frame. You may also feel differently in a years time.

I think PT is a really good idea, or a good massage therapist. I started it up again yesterday, and already feel the difference. Multiple surgeries and "life" has taken a toll on my posture/shoulders/neck and I am extremely tight on my mx side. It may really help you.

Be well.

GointoCarolina

Thanks,cascader,now that my stomach issues are under control,I am feeling so much better,mentally and physically.The constant nausea and not being able to eat were wearing me out.I am trying not to push myself...and being able to go to the barn and feed my baby goats lifted my spirits! I sent the photos and Dr.Kline thinks this is just post op swelling.Like you,I am not even going to think about what I will do next.Right now I have a needle phobia,they had to stick me so many times in the ER,my poor arm and hand are so bruised and sore.Just the thought of anyone doing an IV or drawing blood makes me want to hide under the bed.My husband did share with me that he hated me going so far away for surgery,the fact that he could not be there with me really bothered him,especially since the one flap failed.He is still supportive of whatever I choose next,but being without him was hard for me too.

cascader

i love baby goats! My daughter was in 4 H and we raised cashmere goats and rabbits for many years. I miss not having them . 

GointoCarolina

Wish you could visit my little farm..I have Nigerian Dwarf goats,miniature donkeys,chickens,ducks,guinea hens,several dogs and cats ,parakeets and a red bellied parrot.I had quite the welcoming committee!Hope everyone is doing well, my tummy is on and off...

Catie2013

GTC, so sorry you have been through so much.  LIke lots of Dr. K's patients, I took pictures almost daily and bombarded his email with any changes that occurred, including the swelling you mention on your failed side.  It helps to give you a perspective later when you go through those emails and see the progress you've made too.

The drain removal is easier with Dr. K's patients because he does not use the drains that 'hurt' when taking out.  He said they were barbaric!!! LOL.  When my drain needed to be removed on the 4th of July I had emailed him and then he called and had my daughter remove them while he was still on the phone!!!!  I too thought I'd need some pain meds for it and he said it shouldn't hurt at all, which it didn't - both my daughter and I were amazed at how easily it came out without any pain.  She snipped the stitch and made sure it didn't slip back in and just pulled gently.  I think I read somewhere that someone else on this forum had pulled their own drains per the Dr but hard to remember unless you are going through it at the time. 

I had a horrible time trying to find a Dr at home that would help post surgery - finally had Dr. K talk to a Dr at a wound care clinic that helped for other than the drain pulling.  I also had a very good friend who is a RN remove my stitches for me (I could have gone to the wound care clinic but my friend was very willing to do it and her daughter who is a PA for a surgeon also came and did the stitch removal for a 2nd stage surgery).  

Just a reference point in my case, although my first surgery was 14 hours as well, the PAP was MUCH MUCH less time in the OR!  I want to say 4-5 hours, if that and I was back in the room!  So not all surgeries will be as long just in case you decide to have the flap repaired.

Catie2013

On a more pleasant note, I've been out of pocket for a while because my DH followed through on his gift to me for going through all of this and now being 'done'!  We just returned from a cruise to the Eastern Caribbean!!!!  I don't think I thought about my ordeal more than once, briefly!!!  2 years ago I was JUST getting my wind back from a April surgery and now 2 years later able to feel normal again!

Speaking of normal again - wanting to throw a date out there for a possible reunion!?  It seems that the October date for a reunion fell through because Dr. Baron is not in the office the month of October, so my goal was to combine my visit with him (yearly) with a reunion and since my appointment is November 11, I'd like to through out the weekend before, Friday the 7th, Saturday the 8th, Sunday the 9th as possible dates to have a reunion  - does that work for anyone?  Any or all of the dates?  A chance to get together face to face, enjoy some CHS atmosphere while not in the throws of surgery???  

Hoping to make it a yearly thing when we can coordinate times with Dr appointments in the future. 

Let me know and I will see what I can do to coordinate Dr K's and Dr B's offices in some way as well (they both mentioned wanting to do something for us "Dr K and C's ANGELS")

Hugs

Catie

PinkHeart

Catie,

Of course you know I'm a Yes to reunion dates.

Let me know if anyone needs rides ok?

montrial

Catie:  Unfortunately, the November dates suggested will not work for me.  I will be returning home from Charleston on Nov. 1st following my Stage 3 (having arrived 10/26).  You have undertaken a daunting task as you attempt to schedule the first reunion.  I hope this date works for may others so that you can proceed and, hopefully, I will be able to participate in the next one.  Good luck and best wishes to all.  Montrial

PinkHeart

Will see Dr Kline this Friday at EC office to have him look at the hard lump on my donor site incision line. Also still have a light rash on same incision line. Nothing major but since Im here now I luke knowing all okay. 

PinkHeart

Lump is fat necrosis that Dr K said would go away. Go back again in 8 weeks. Next and last surgery in six months. Mini tummy tuck, more fat grafting to rads weeny breast, and maybe, maybe take one last shot at evil cording. Doc and Nurse Chris were fun today too. 

lbrewer

good news pink.   I was hoping to get to CHS for work but they picked other people. 

Tamiami

I'm officially scheduled for 1/22/15!  When looking for a place to stay on VRBO, what is the best/most convenient area to look in?  Also, will I be able to do stairs?  A lot of the rentals have 4-8 stairs to get to the door.  Anything else y'all can think of for me to look for in a rental?  My mom will be coming with me and we will probably be flying in/out and renting a car while we're there.  Thinking about renting for 2 weeks minimum...any thoughts on that?

MartyJ

JAnuary is the perfect time for a winter beach rental.  Look at Sullivan's Island and Isle of Palms.  Both are convenient to East Cooper Hospital.  Besides VRBO, look at Island Realty, Wyndham, Dunes Properties and Wild Dunes.  Wherever you rent, a car will be essential.  You will be able to handle the 4-5 stairs slowly.  Quite a few of the Winter Rentals in Wild Dunes are in mid-rise condos with elevators.  The flood insurance rules require most properties to be elevated, so the 1st floor is raised (often a full floor).  Since you will be recovering, staying in the historic district won't make sense as your time will be spent healing rather than touring.  Though I suggest you come down a few days early to see the city.  It is quite beautiful and unique.

PinkHeart

Tamiami,

Good to hear you're set to move forward with natural breast reconstruction!  Who is your microsurgeon?  

Definitely go oceanfront if you can. What a great setting for time before and after surgery.  Like Marty said,  Isle of Palms or Sullivans Island.  There aren't any condos on SI -- just houses.  Both are close to downtown, SI more so. I may take the water taxi the next time I go touristing downtown.  Both are close to East Cooper Medical Center, too, making it easier on your mom going back and forth. 

Are you going to do wheelchair service when you fly home?

Did you request to have your surgery date posted at the top of this thread?

MartyJ

pink, there actually are some condos on Sullivan's.  They are few, tiny and mostly along middle street mostly.  You wouldn't know they are there if you don't look carefully.  Very sneaky little condos.  It is important to know that there is a 30 day minimum rental on most of Sullivan's  

Tamiami

Thanks Marty and PinkHeart!  I'll check out those areas.  Both Dr.'s will be working together from what I understand.  Yes, I'll definitely need a wheelchair for the airport.  I'll request adding my date after my husband has some of his Dr appts...based on those, I may have to postpone.

I'd like to find a rental that has a recliner, so if anyone has info on that I'd appreciate it.  The only other must have is wifi. 

Ashira

Hi Tamiami.Congratulations on scheduling your date.  I stayed at Isle Of Palms, in a ground floor condo that is owned by a former patient of Doc Craigie and her husband.  I rented for three weeks, very reasonably.  The condo was retrofitted specifically for patients, with a walk in shower. Tim and Kathy were wonderfully supportive in every way. Definitely worth looking into:  www.bedonthebeach.com  

Tamiami

Thank you Ashira!

PinkHeart

Marty,

I walked on SI last night and I think I saw a waterfront home that is split into four condos. Across from Stella Maris Catholic church?  

Ashira thanks for posting condo rental info for our traveling sisters. When is your next surgery?

PinkHeart

MartyJ,

Do you walk every year in Komen Lowcountry race for cure?  I

MartyJ

just lost a long post.  Will reply in morning.

MartyJ

good morning!  Traveling this week.

The condos are mostly tucked in on Middle street.  A 70s building near the post office.  A couple of the old enlisted barracks.  Very expensive for what you get, but the island regulated condos years ago to prevent their development.  What you saw at the beach might be an older duplex or triplex, but a one owner building most likely.

I was going to walk Komen several years ago, but it rained.  Of course with our funky weather, it poured on IOP and only drizzled on Daniel Island.  Too many people, too much traffic.  Parking challenges.  A new gal from Houston asked me to walk with her, but we are about of town.  Maybe next year.  Because I got into this BC game almost 30 years ago in another city, I wasn't even invited to a survivors luncheon til last year.  Guess I tried so hard to not let BC define me that few knew.  I was 33 and single when diagnosed at a time when it only "happened" to older women.  An anomaly for the support systems.

PinkHeart

Marty,

Thanks for sharing. That had to be tough being so young and dx with BC. I may do the walk but take shuttle from Towne Center. There are 30,000 at walk in Indy. Is it that big here?

Last weekend I was going to walk the AHA Heart Walk downtown and take the water taxi to avoid traffic and parking. Water taxi hours were not early enough so passed. 

Tomorrow I am taking the 10:00 WT downtown to check out the Farmers Market. Heard it was one of top in U.S.  

I have a bottomless bucket list going here in CHS!

cascader

Tamiami, I stayed a month at Sandpiper, a senior living place. They rent out their empty units, I had a 2 bdrm 2 bath and it actually worked out very well for me and it was very reasonable. Nothing fancy but for long term it was perfect. If you have any questions about staying there let me know. Thanks Ashira for the link to where you stayed, staying on the beach is much more preferable in my book.

Pink, sounds like you are having fun exploring your new home.

Tamiami

Thanks cascader!  Do you have a link to Sandpiper or an address?

scary

Can you add me to the list?  My exchange surgery to implant on right breast plus fat suction/transfer from stomach, and reduction of left breast will be in charleston on October 29, 2014.

PinkHeart

Scary,

I don't know if you noticed but this thread was started for BC patients having natural breast reconstruction with free flaps (using       your own body tissue). 

You can learn alot even from our experiences going to Charleston microsurgeons for our very specialized surgery. Have you thought about starting a Charleston thread for BC sisters having implant reconstruction?  

Ashira

Hi Pink, my next surgery is Nov  21st.  Who is posting up top?  I've forgotten to ask. Strange to be so used to surgery that it's feeling common place...

MartyJ

ladies, this thread is owned by Jeskachi, a patient of Dr. Massey's, from the time when Drs. Kline or Craigie assisted her.  You must PM Jeskachi and ask that she update the list.  She is not on these boards that much anymore.  If you note in the introduction, she was trying to establish a place for women who come to Charleston for their reconstruction but it does not specifically state natural or flap surgery.  That is implied if you know why women go to NOLA for a certain procedure.  

Scary,mWelcome.  If you are coming to Charleston for reconstruction and we can provide any help, please ask.  Traveling for any type of surgery is challenging.  I am sure you will be fine, but am happy to help.