Charleston Bound, part 2

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  • cascader
    cascader Member Posts: 599
    edited January 2014

    lbrewer hope your surgery went well and you are resting. Lots of water and protein. 

    I haven't been wearing a sleeve, only when I am flying, because no probs since my Sgap. I think I just tried to do too much too quickly. Live and learn. Going to set up appt with PT who can outline a program for me

  • lbrewer
    lbrewer Member Posts: 766
    edited January 2014

    lymph therapist told me to wear it when lifting weights and working in the yard. Using the muscle improves the drainage but she adamant about the sleeve. Dr. K had here come see me when I did my first stabe

  • lbrewer
    lbrewer Member Posts: 766
    edited January 2014

    second round in my Grammies make over complete

  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited January 2014

    Lbrewer,

    Hope you are doing well with recovery. Will you have a post op with Dr K?

    I really liked the East Cooper hospital PT-CLT. She even came in on Saturdays and Sundays to work on me and had great communication skills and documentation. I submitted a recognition award for her but have blanked out on her name. 

  • lbrewer
    lbrewer Member Posts: 766
    edited January 2014

    I can't remember it either. She had cancer earlier herself. Actually went to the on as I did!

  • Kindergarten
    Kindergarten Member Posts: 4,869
    edited January 2014

    hi, brca35! I hope you got my pm!! I wish you well with your surgery and healing!! Hugs, Kathy

  • Catie2013
    Catie2013 Member Posts: 1,023
    edited January 2014

    Cascader - yes, I'm still May for my Frosting on my cupcakes (code for nipple tattoos).  Can't wait to hear your info re yours in March!

    BRAC - Hoping your logistics get straightened out soon, but it all seems to work out, I believe as mine was a work in progress even as I was in CHS.  And I am very grateful I stuck with my decision to use Dr Kline and Craigie instead of staying local (ATL area)!

    Lbrewer pulling for you as well!

    Hugs

    Catie

  • lbrewer
    lbrewer Member Posts: 766
    edited January 2014

    doing well  I must have some allergy to the glue tho!  i need advice on recovery from the fat grafts.  how long do you wear the compression stuff and how long till you can swim?  I'm looking at the end of April but have a Mother's Day get away planned.

  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited February 2014

    lbrewer,

    Glad to hear you are doing well. That glue itched me, too, but left it alone. 

    After my surgeries that I had incisions I was told six weeks until I could go swimming. Fat grafting just has the tiny holes and I believe I was told four weeks. Check with your doc to be sure. 

  • Ashira
    Ashira Member Posts: 161
    edited February 2014

    Hi ladies, I thought to introduce myself here, as I scheduled surgery with dr. Kline in April. Just making this post somehow makes it real -- and scary. Any words of wisdom that you have would be appreciated. Many thanks. 

  • Catie2013
    Catie2013 Member Posts: 1,023
    edited February 2014

    Ashira, welcome!  I felt the same almost 2 years ago!  My surgery was April of 2012.  To put it mildly, you are in great hands with Dr. Kline, his staff and East Cooper Medical Center.  AND the ladies on this forum - absolutely turned a not so great time of my life into one I feel has richness beyond belief in knowing some fantastic ladies (several of which I've met and grown very fond of) and a medical team that is truly there for YOU - even to the point of making you feel you are the only patient they have!  (Funny then to meet in person many ladies who are also patients - LOL)

    Welcome, relax, breath, and enjoy the ride, before you know it you too will be almost 2 years out!

    Hugs

    Catie

  • Ashira
    Ashira Member Posts: 161
    edited February 2014

    Thank you Catie! It is good to hear that your experience has been so positive. The thought of being two years out of this... difficult to imagine. For now I'm living moment to moment. One step at a time. I look forward to knowing you better. 

  • cascader
    cascader Member Posts: 599
    edited February 2014

    Hi everyone!

     Lbrewer I also had an allergic reaction to glue, I washed it really well(scrubbed) and put some OTC cortisone cream on, after a few days it calmed down and went away, hopefully by now yours is gone. How are you doing?

    Last week I  passed my 5 year mark since diagnosis, unreal to look back at everything I experienced/endured in that time. I remember feeling that it was never going to be over and life would never ever be normal again, but here I am today, feeling pretty damn good! For those that are new, I had a uni Sgap and from start to finish(3 surgeries) it took me one year. You can do this,  you will heal, recover, and flourish, but during those sometimes difficult in between times, the ladies on this forum are the best! Couldn't have done it without you all! Ashira and others I wish you well. Ask, complain, or cry...we have been there and understand what you are going thru. 

    Catie, I am sorry I will miss you in Baltimore, will let you know how it goes.

  • Ashira
    Ashira Member Posts: 161
    edited February 2014

    Congrats cascader, on  your 5 year anniversary. May you celebrate many,many more!

  • lbrewer
    lbrewer Member Posts: 766
    edited February 2014

    dr k gave me some cream which I turned out to more allergic than the glue. It was like wildfire!  Washed real well and put some aloe and cortisone cream on it.  Took a few days but it's cleared up now.  

  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited February 2014

    Cascader,

    Congrats on your five year anniversary!  You have lots to celebrate -- being c free and getting nips by Vinnie to finish a long road of recon. I think I will have about the same timeline as you when I get done. Heading for Stage 6 in ~ May 1, and waiting for exact date. 

    Are we still putting surgery dates at the top?

    Lbrewer, 

    Glad to hear the reaction went away. Did you tell dr k that you were allergic to cream too?

    Ashira,

    Been thinking about you since we talked last week, and am so happy that you made your decision to go with natural breast reconstruction and with Dr. Kline. I see you just started chemo and sending you strength and peace. 

    Have you asked about staying at Hope Lodge?  I stayed at Comfort Inn Suites at Isle of Palms connector with a medical rate of $63 per night. It's 10 mins to hospital/Dr Kline office, and 5 mins to beach. One block to beautiful new outdoor mall and numerous nice restaurants and grocery store. Hopefully you and your friend will have time to see the sights before surgery!  ☀🐬🌴🐚  Welcome and warm wishes. 

  • Catie2013
    Catie2013 Member Posts: 1,023
    edited February 2014

    Cascader :  CONGRATS!!!!!  5 yr mark is a good one!!! And, I hope 50 more to you!!! When I go to Baltimore I'm going to merge it with seeing my son and his fammily.  My 6 year old granddaughter has picked up on the conversation that "Gramma is going to get frosting on her cupcakes" - so thinks we are having a cupcake party!  SO, I will also be celebrating her 7th bday and will be sure to buy real cupcakes too!  I think frosting on cupcakes is easier to say than getting tattoos on my ta ta's!!!! LOL  So, the May 6th date works for me and wouldn't really want to change it, but so glad you were able to get in earlier and so looking forward to your thoughts about the experience.

    Ashira:  I stayed at the Hope Lodge, as Pinkheart has suggested.  Truly a Godsend!!!  I think they still (or did then) want you to get a hotel reservation in advance (make sure it is cancelable) so that if there isn't space at the Hope Lodge you will have a back up.  Hope Lodge doesn't cost you anything to stay and they also feed you several nights a week.  Any questions about it, I'd be glad to answer from my experience.

    Lbrewer:  Aloe is wonderful!!!!!  Hope you itchies are gone and you are feeling better.

    Hugs all

    Catie

  • Ashira
    Ashira Member Posts: 161
    edited February 2014

    Thanks so much for your warm welcome. It was really helpful to hear first hand about your experience in order to finally schedule my date. I discussed hope lodge with Gail, but am coming with a girlfriend, who will feel most comfortable with her own bedroom, so it looks like a condo for me-- at least for stage one. I'm thinking of coming down with only my 12 year old daughter for stage 2 and will look into hope lodge then. Gail let me know that I can be released to a home health aid and tells me that I should be recuperated after just a few days which would leave some time to enjoy the area with her.  Does that sound realistic to you? 

  • bliss22
    bliss22 Member Posts: 3
    edited February 2014

    Hello all!  Been reading this thread for sometime now and need to ask a couple questions.  I live in the Atlanta area and was hoping to find a surgeon that could do the DIEP - but it looks like Charleston is the best.  I have a Mom and three aunts who have all had bc and two died.  I have regular mammograms and have large, dense breast. They have been watching small calcifications for years now.  I've decided I want to have both breast removed and have DIEP.  I have insurance.  I would have to go to Charleston alone - so I was wondering if that is doable.  I know Davy did that.  How often do you have to make the trip back and I'm confused about the # of surgeries that are required.  

    Thanks for the thread - you are helping me make up my mind! 

  • cascader
    cascader Member Posts: 599
    edited February 2014

    Ashira,what type of surgery are you having? unilateral or bilateral? All of these things will make a difference in your recovery, and of course we are all so different in our experiences. After Stage 1 I stayed in CHS for a month, I live very rural on the west coast and wanted to be close to Dr. Kline, just in case. I didn't have any "just in case" issues, but after previously experiencing a scary failed implant recon and being 4 hrs away from my PS I needed the reassurance.  Realistically I could have left after about 10days. Stage 2 is easier and you will be able to sightsee, but you will need a rental car, and your daughter is not old enough yet, so something you may want to consider. You won't feel like driving, and if you are taking any narcotic pain meds, you wont be able to drive. Hopefully you can stay at Hope Lodge, not sure if they have any car service??  Stage 1 I stayed at Sandpiper Village, it is a retirement community, nothing fancy but was perfect for me. I had a 2 bdrm 2 bath place with kitchen. Very affordable. Stage 2 and 3 I stayed at Homewood Suites, included in your rate is a full bkfst and ample dinners Mon-Thur, along with free beer and wine, for you companion of course :) There are lots of options, I like using VRBO for condo rentals, but in my opinion you will want a driver with you who can pick up prescriptions, take you to follow up appts, pick up groceries and to go meals, etc. Maybe some of the other gals who went it alone can join in and let you know how they did it. Also, if you would like to get your surgery date listed at top, please PM jestkachi and she will do that for you. Helps the rest of us in sending positive and healing vibes your way :)

    Bliss22, good for you for doing your homework!  Dr.s Kline and Craigie were wonderful and I am so very pleased with all aspects of my care and results. As far as the number of surgeries, it all really depends on where you are starting. I think with regards to cosmetic results, you are in the best position doing DIEP at the same time as your mastectomy. Ask the doc about the number of surgeries, if you will have nipple sparing or not. My guess is that you will need at least two surgeries, the first to transfer the tissue from the donor site, and the second to shape and contour. I had a third to create a nipple . Good luck in your research. Once you have made your decision and get a surgery date, it will feel as if a huge weight has been lifted.

  • cascader
    cascader Member Posts: 599
    edited February 2014

    Catie, so funny about your granddaughter! Just don't make the mistake of actually getting replica cupcakes(or cherries) tattooed on you instead! I am going in on St Patricks day, and don't want Shamrocks, altho he does have a pic of a women who chose that instead of a nip.Thank goodness we have the freedom of choice 

  • Ashira
    Ashira Member Posts: 161
    edited February 2014

    Cascader, I am having bmx with bilateral diep. My friend will be there to care for me during stage 1. I plan to stay for two weeks and pray that's long enough. It's stage two that I thought to travel alone with my daughter. I'm told they will keep me overnight. I should be able to drive after about three days, shouldn't I ? 

  • 5andcounting
    5andcounting Member Posts: 232
    edited February 2014

    Ashira-all the ladies on this thread are wonderful resources about the area and procedures. They certainly were a godsend to me. I had stage 2 in November. It was about a week before I could drive as the drains stayed in til then. You will likely need someone with you to drive. We went down early and enjoyed the area before surgery. I have stage 3 at the end of this month. Good luck, you will be in great hands!

  • cascader
    cascader Member Posts: 599
    edited February 2014

    Maybe, depending on what you have done and how you heal. You might be sore from lipo and probs won't want to wear a seatbelt. I honestly can't remember how long it took me, but stage 2 was my seventh surgery and so I was pretty wiped out . I'd have a back up plan . Hopefully others will chime in with their experiences. My advice for what its worth, is to Forget about stage two for now if you can, and concentrate on being in the best shape possible for stage 1, do LOTS of squats :) . Really helps with recovery and getting strong aerobically will help with  anesthesia after effects. Stage 2 is not for awhile and everything will fall into place perfectly, one step at a time. Are you still in treatment?

  • lbrewer
    lbrewer Member Posts: 766
    edited February 2014

    as dr k says stage two is a catch all phrase so it really all depends on what is done.  Mine was reshaping both sides (prior DIEP) and now uni. SGAP.  Some people it's fat grafting.  Dr k can give you a pretty good idea of what your recovery will be once you determine what is going to be done

  • Ashira
    Ashira Member Posts: 161
    edited February 2014

    best wishes for stage 3. Always good to hear from that I'll be in good hands. How do you feel about your results?  I am a full DD but continue to lose weight through chemo. Concerned that I may end up too thin. Never thought that I'd fear that !

  • bethcw
    bethcw Member Posts: 98
    edited February 2014

    Ashira, I agree with Cascader about not worrying about stage 2 details yet.  You have plenty of time to work out your details later.  Concentrate on doing what it takes to get through with Stage 1 now.  After your time in Charleston for stage 1, you'll be more familiar with the area and have more of an idea as to what you will be able to handle.  I have had the unusual experience of having three (yes I said three) stage 1's during 2013.  I don't know of many people who can compare and contrast the SGAP, DIEP, and PAP surgeries - lol!  During my PAP flap in October, I stayed in town for 2 weeks and that was long enough (I beleive that was the longest time I stayed for a stage 1).  The first week was spent in the hospital since I was high risk.  My husband drove down with me and actually went home the evening after my surgery, and I stayed in the hospital in town by myself.  That saved me a weeks worth of lodging expenses.  He came back the following weekend to pick me up when I was discharged.  I am so impressed with East Cooper Medical Center, and absolutely adore the nurses there.  They know exactly what they are doing and take excellent care of you.  I had a lot of people second guess and give me a hard time about not having someone with me, but I had no reservations about being by myself while I was there.  It was actually less stressful for me than the other times when I spent time worrying about what my caregivers were doing while I was in the hospital.  I live about a 4 1/2 hour drive away and don't have a problem with getting back into town for appointments when I need to.  I'm not sure how far away you are traveling from, that may affect how long you will want to stay close by.  And just to give a happy ending for my story, I am finally scheduled for stage 2 at the end of the month!  If you have any specific questions, feel free to PM me or ask here.  Like everyone else has said, this is an awesome group of ladies, and I am lucky to have everyone in my corner!

    Take care, Beth

  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited February 2014

    Ashira, 

    I'm pretty sure that caretaker has to be 18 to stay at Hope Lodge....

    We all heal differently, but my most recent surgery (Stage 5), was just fat grafting. I live 11 hours away and drove down alone. I drove home 8 days post op and wondered after three hours if I should stop at a hotel because of leg pain walking at rest area but I forged on. I would suggest to go down early before surgery with your daughter so you feel good and can enjoy time together at beach and sightseeing. Will hospital allow her to stay overnight in your hospital room with you?  I'm a planner, too, but I second Cascader's thoughts to get through first big surgery. And doing Squats is best advice she gave me.  Helped me move easier after surgery big time.   Lots of hugs to you and your daughter!

  • Ashira
    Ashira Member Posts: 161
    edited February 2014

    I'm a single mom and a small business owner with an insurance plan that ends in November 30th, so my days of spontaneity have unfortunately long since passed :-( 

    My need to schedule my daughter's summer and the care she'll need is forefront in my mind, along with my prayers that I 'll be fortunate enough to go through this smoothly and in a timely fashion. I know that things are likely to change, but I honestly don't know how else to manage it all without planning down to the last detail. I imagine that I must sound a bit obsessive...I do appreciate your reminders to take things one step at a time. I just wish I knew how.

    Beth, three stage 1's ? I can only begin to imagine how difficult that must have been and what a relief it must be to be finally moving on. I'm sorry to hear that you've gone through so much and glad that you have a supportive husband by your side. I would love to speak with you further and am home lots these days, so please pm me with your number and good times to reach you if you are comfortable with that. 

    Pink, I am 15 hours away, so if you were in pain after just a few hours 8 days post op, that tells me what I need to know. It's not likely that I'll want to do the drive home on my own...unless I could stay for a month at the beach!  Wouldn't that be nice :-)

    Again, thanks for your guidance and your candor. 

  • PinkHeart
    PinkHeart Member Posts: 1,193
    edited February 2014

    Ashira,

    You're def not being obsessive. I'm a huge planner by nature and work. Hoping for you that someone else can go with you and daughter for Stage 2. You will more than likely have drains. 

    For my Stage 2, I flew alone. For my return flight I had wheelchair service at no charge. It helps to have someone dropping you off at curbside where airport staff will bring your chair and check your suitcase with you. Dr. Kline has a driver he uses that is less expensive than a taxi. I am fortunate I have a friend that lives in Charleston who discharges me and takes me to airport, etc. Then have someone at home airport to get me and bag. 

    I tried to move to Charleston (still working on that), and wanted to be able to help out other BC sisters with getting around, errands, etc. if they felt comfortable with it. 

    I did not have a very supportive soon to be ex-husband. I'm very determined to get through this BC and unusually long recon journey. Believe me, the support of old friends, women on this board, those that I have met personally while in Charleston, and Dr Kline and staff, have def given me hope and help get me through!

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