Motivation

dlb823

For those of you who didn't know Mary (MBK), here are links to a couple of things about her:

http://www.ryandavidjahn.com/apps/blog    

http://www.maryjahn.com/ 

As I posted elsewhere, Mary's sudden passing was especially hard for me because I feel she was really let down by the system due to a probable lack of health insurance.  And, I guess it's also hit me that losses like this are now an inescapable part of my life since bc.  But thanks, survivor & Kari for understanding.  And sorry you're also dealing with similar thoughts, Kari. Ironically, so is my DH, but for an entirely different reason.  A man who had worked for him at one time and who we both liked a lot was killed in a motorcycle accident a couple of days ago.  A truck pulled out in front of him.  He was 48 years old.  Such a shocking and senseless loss. Okay... enough sadness...

Hmmm... I'm going to go pick up some tart cherry juice, Kari.  And how was your weekend road trip?   Oh, and if your PS search extends beyond Northern CA & NOLA, I can highly recommend my PS @ UCLA.  He's a brilliant microsurgeon/PS and a lovely man.     Deanna

Springtime

Deanna, I am sorry for your loss. I've lost several, and I know several stage 4, it just isn't easy. But it is real. I think avoiding the BC community would not be the right choice for me, so I try and co-exist with the realities of the loss. I used to get really really mad, but somehow that has passed. It makes me realize we only have this moment, and I try to make every moment count as much as I can. I take a lot less for granted. I bet we all do.

Kari, I hope you hear back from NOLA! Try Dr. Marga too, she takes different insurance. GAP would be great if you cary it in your bottom, and it's a much easier recovery than DIEP! It's a tricky surgery though, less frequently done than DEIP, I really hope you consider the experts that specialize in only breast reconstruction... Send a note to Liz at NOLA! it took me 2+ weeks to hear back, so that is not unusual. Don't be discouraged. I hope nobody else makes you cry!

Deanna, I hope you keep walking! It must be the endorphins!

Today I did 45 on the elliptical for 385 calories. Yesterday was a day of rest, my legs needed a day off, and I felt strong again today, so that was a good decision. I really enjoy my "rest" days because I really feel like I earn them!

Survivor, I have not done reserach on the AI's yet. I have an ONC meeting in May, and I'll see what they say then. They did some standard hormone test to see if I was truly in menopause, but previously, my onc has said she wants me on the tamoxifen for 5 full years, then switch. I just can't stand the thought of this. I so want to be done with these meds. on the other hand, I don't want to have regrets either. However, I now I an not a typical post BC patient. I exercise vigorously and regularly, I have a greatly modified and healthy diet, and I take many supplements that are preventative (or at least, I believe them to be so). My onc would not think any of these things are good reasons not to take the drugs.

I wish there was somebody who really had the answers.

kfinnigan

There are 4 PS surgeons at Kaiser Santa Clara who specialize in GAP, etc. procedures.  One from UCLA and the one I'm seeing is from Stanford.  My local PS gave me some questions to ask, and I have another sista who put me in touch with her girlfriend who had the SGAP procedure done along with a picture.  I have her email/cell now so I can ask her lots of questions.  And another sista who has a friend who had the SGAP done at Stanford, so I have some questions in to her as well.  I'm an HMO, so I already know the answer to going outside...a big fat no, unless there was some crazy reason they had nobody qualified.  Its ok, I will figure it out.  I have an appt. set for my day off (on my birthday) May 11 to drive down to Santa Clara.  Too bad, they had no openings next Thursday as I'm off that day too and am headed down there.  We are headed to Cabo for 8 nights!  lucky me!  Deanna, I couldn't post on Facebook, but we went to Sonoma (wine country) for the night and picked up wine.  My DH has a brother who lives there, but we just wanted to be alone for the night.  I know that sounds mean, but he has 8 siblings and they are everywhere!!  I hear ya on the senseless loss of life, way too much of that in our lives it seems lately.  WE GOTTA LIVE !!!!  and find the joy everyday!!

Dang Spring, I never get up to that many calories burned!  You are a superstar! 

edited to add:

Deanna, I am in tears reading about Mary...her husband's words were so heartfelt.  That a tragic loss....so sad 

Springtime

Kari, there was somebody who started out on So. California and didn't have a good experience with one particular doc for a DIEP. I wonder if I should find out who the heck that was so you can avoid them? Let me know if you want me to look into it. Of course, that is one person, but it wasn't a good story!

I did yoga for 90 minutes!! life is so good! 

Survivorwoman

Ladies: what a wonderful day I had! I so needed it today. I went to visit a friend in NJ and ended up gardening with her, which was rather therapeutic as well as a great exercise. I was digging up soil, weeding and planting. Here is a photo of some of the areas I cleared and planted.  I am so exhausted that I think I am off to bed. Tomorrow, I have blood work day.

kfinnigan

Springie, YIKES who the heck was that person?  I am trying to arm myself with all info.  There isn't that much info on these boards regarding GAP, its mostly DIEP....wonder if I should start plowing through all the threads, maybe some of the experiences are similar?????

Survivor, what a beautiful photo and look at that kitty!!  I think this is our first day where the weather should be decent.  Our heaters have been on for weeks now and I'm tired of sweat pants/shirts!  Geez, I will be in shorts in a week - YIKES!!!!!!!!!!!!!

Only managed my lunch walk and some light stretches yesterday...mentally tired right now....dealing with car stuff and thoughts of reconstruction are invading my dreams.  Gotta get movin and clear my head.  We are babysitting Saturday night, I can't wait!!!  There will be dancing in my near future  

harley63

Survivor, 

LOVE THE PIC!  

Deanna, so sorry for your loss.  I didn't know MBK, but I am still shocked and angry that the system let her down.

Harley

dlb823

Kari, I know the story Spring is referring to.  The doc was @ an OC hospital (I can look up his name for you, I have it in an old PM) when she had the surgery.  She more recently found out that he was @ Harbor UCLA, which is in Torrance, and not really connected to UCLA Plastic Surgery at the main medical center in Westwood.  I can't imagine that he'd be doing breast recon, but I was surprised to hear that he was @ any UCLA affiliate after hearing of her bad experience.  But anyone in CA needs to be aware of her bad experience.  I'll PM you names.     Deanna

Update to the above:  I'd never heard his name before, but I did just find the doctor the other BCO member had problems with listed as practicing @ Harbor, ULCA, but also attending @ the other UCLA facilities, including the main hospital, and breast recon listed as one of his specialties.  Boy, we all need to be aware of this!  

 

spunkyboobster

Finished 45 min of yoga-a little difficult with frozen shoulder, but I made it through.

Survivorwoman

No exercising for me yesterday. I was at my onc's office trying to figure out why I had been experiencing some pain in my right side for the past three weeks. Well, we did some blood work and the liver looks good, nothing there. I am going to get a pelvic ultrasound next week. I think I have a cyst on my ovary. It is a bit puzzling, as I am in chemo induced menopause with extremely low estrogen. So, we'll find out next week what is going on. It just makes me uncomfortable to do any yoga, though, I would love to.

harley63

Deanna,

I sent a message to Barbara, but haven't heard from her yet.

Survivor,

Glad your liver is good.  sorry you are having such pain.   Hoping they figure out what is wrong so they can fix it.   HUGS 

Harley

kfinnigan

Thanks for the info Deanna!

I saw Spring's post on NOLA and read the posts to Dr. D and I posted to him yesterday regarding GAP and expertise in this field.  Sorry to be posting so much about this on this thread, but I feel close to you gals.  This was Dr. D's response:

Dear Kari,

Unfortunately, the GAP flap is a common "bait and switch" procedure. There are very few, to no, practitioners who actually do the operation but many who claim to. Having spent substantial time talking with microsurgeons around the country, it is probable that there are only one or two (more likely one) group that routinely does bilateral simultaneous GAP flaps. This is because the operation is technically complex and time consuming. So, it is not uncommon for misinformation to be inserted into the dialogue such as "you don't want that operation it has a high failure rate" or "it'll disfigure your buttock" or "it is a very long and difficult procedure" or "it'll only provide half the size of your remaining breast". In well seasoned hands, the operation can be done in 3 hours for one side and 6 hours for both (that includes mastectomy when required). It can produce a beautiful breast and a nice looking donor site but it must be done in an absolutely specific way to accomplish both. So, it may be worth paying out of pocket for a consult with an absolute expert in such a specialized procedure, at least then you will know whether you are a proper candidate or not and you may gain valuable information to plead your case for coverage outside your network should that be necessary.

Sorry, bit of a soapbox for me,

Yours,

Dr. D

Survivorwoman

Kari, we feel close to you too, so please don't apologize for anything. We are talking among us.... But what is GAP in bc terms? XX

kfinnigan

Awww thanks Survivor!!

Here is the definition from the NOLA Breast Center site on the SGAP (for reconstruction):

SGAP Flap
For the thin woman or those with otherwise inadequate tummy tissue the breast may be reconstructed with tissue borrowed from the gluteal area. Skin, fat, and the tiny feeding blood vessels are collected without loss of underlying muscle tissue. The fatty tissue is removed from the excess in the upper hip providing a closure line that is concealed even in the most delicate of undergarments.

Perforator flaps represent the state of the art in breast reconstruction. Replacing the skin and soft tissue removed at mastectomy with soft, warm, living tissue is accomplished by borrowing skin and fatty tissue from the abdomen or hip. This is accomplished without sacrificing muscles and strength as compared to less sophisticated techniques.

--------------------------------------------------------------------------------

Springtime

Deanna, Was this woman Sandy in CA? Or is this another bad story? Pls confirm, because I can check with Sandy and PM Kari the name to avoid if this is a different one! (I pray NOT!)

Dr. D was my surgeon at NOLA, Kari. He is so good, and so wonderful. I will PM you my pics (blush blush). I am not surprised what he says about GAP. We must find you a good surgeon if you are going to do this! Did you ever hear back from anybody there at NOLA? Or send LizMarkey and email? She is the new pt education coordinator. Let me know how I can help.!! I am so proud of you that you are doing such good research! It's so important...

Last night was 45 on the elliptical! Tonight was a day of REST. We went out after work for dinner, drove aroudn to admire Raleigh and all the Dogwoods and Azaliea's in bloom! Great start to the wkend! Bike riding ahead!  

kfinnigan

Sent you a PM Bev.  Did a treadmill program last night after going out to dinner.  Waking up to another WINDY cool day with rain on its way.

Have a happy Saturday all!  Survivor, I hope you are feeling better!!

Springtime

13+ mile ride! My bike was not fun today, too hard to push for some reason. Looking at new bikes with skinnier tires. I test rode one. OMG I was zipping along. I think I am going to get a new one where I can keep up with DH. He got a new bike 2 weeks ago, and now I am left in the dust!!!

Going to ride again tomorrow... 

Springtime

Another 13+ mile ride! And I got a new bike! yay! I tried out Richard's bike today, liked it, and we went and bought one. These are "recycled" bikes, just $200, but a much better ride than my old thing. Took 10 minutes off our time! I like going fast...

Blessed week ahead, girlies! 

spunkyboobster

Congrats on the new ride, Springtime.  Here's to many happy miles

Springtime

Thanks Spunky! (great name!)

kfinnigan

Congrats on the new bike Springie!  Yay for whooshing along and not being left in the dust!  I've yet to take my bike out for a spin, We've had crummy weather...just got my heating/electric bill - OMG it was over $300!  YIKES!  Had our sweet GDD this weekend, danced and pranced...oh my achin back LOL!!

Tonight is yoga!

Love the name spunkyboobster too!! 

Springtime

Tonight is a night of REST!! Tomorrow Elliptical! Wednesday is Yoga! Thursday, I hope for a bike ride!  

The baby sounds like good exercise, Kari!  

sobx

Evening everyone!!! I'm at work and finally catching up on the past months. Ya'll have been busy. I have been to court with my ex and will be getting a part of his retirement. I also had to find an insurance company that I could afford for insurance. So the alimony comes in and goes right back out. But now we are going to settle the house. Oh what fun!! not!!

I have been walking my Dd and doing yoga and other exercises to get back in shape. My son's wedding is the 21st. Not too much longer.

Welcome newbies. You will love this thread. It is very informative and fun!!

I was taken off of the generic arimidex and put back on the real stuff because of the insurance problems and my ONC got me the meds for free. All of the side effects came back and I have been achey and miserable. I have 2 more months of the original and then I can go back on the generic with my new insurance company. I can't wait till I don't have to take these meds anymore. I will be back sooner than later and remember the 10 minute rule.

dlb823

YaY, Joy, that you've gotten some of what you deserve!  Hopefully the house settlement will go as well or even better!  And exciting about your DS's wedding this month!  Can't wait to see pictures!  On the Arimidex, I wonder if the lack of SE's in any way indicates a lack of effacacy???  Not to complicate what sounds like a complicated situation, but just a thought I had as I read your post.

The new bike sounds great, Spring!  What color is it?  (Such a cliche female shopper question, but I'm curious!) 

We've just returned from a great 4-day getaway to Paso Robles, which is a wine region in Central CA, with stops in Santa Barbara and Santa Ynez.  Nice cool sweater & boots weather all weekend, in contrast to the 88 we're expecting here today.  We even had a day of rain, which we see almost none of here in the desert.  Will post a few photos on FB if I can find the time later. Busy, busy day catching up, but I'm deternined to get a good walk in before I tackle my lengthy must do list...   Deanna

spunkyboobster

kfinnigan-thanks, the name came from being fed up with people telling me how strong etc. I was; then someone said I was spunky...and the name was born.

kfinnigan

Joy, nice to see you here again!  Been wondering about you.  You're getting things settled which must ease your mind some.  My sister's 55th birthday was yesterday and she's the one who moved with her husband to Las Vegas and then he dumped her, she has MS and was just fired from a temp job (wasn't right for her anyway), but it breaks my heart that she's going through all this stuff.  She'll find her way.  She's met a lot of friends there and feels their love.

Spring, yes what color is your bike?  Love that Deanna!  Color is important!!  Deanna, that Paso Robles area is so beautiful!!!  I've never stopped for wine tasting but have really enjoyed driving through the area. Welcome back!

Spunky, well that explains the name !  I love it!

I won't be on here much as we head out of town tomorrow and leaving for Cabo on Friday, so I will get plenty of exercising there.  You have to walk down the hill to the beach and then back up, and DH and I have a tradition about 6am of walking down to the beach and doing stretches/exercises on the sand and then head back up!  Oh how the heart pumps on the way up!! 

Springtime

Hi Joy! Glad to hear you got the dough to have insurance. Good! I echo Deanna, hope the house thing goes well too....

The bike color! It's just a boy's bike so not girlie at all. It's like a steel gray / blue. Yoga last night, and tonight I'm just too pooped to pop. So taking a day of rest today. Going to have to make up for it tomorrow!! Maybe it will be a good day for a ride.... It got ccccold here today!

Have a fun trip, Kari! 

spunkyboobster

Finally got a pedometer-now if I can just figure out how to use it!

Springtime

13.5 mile bike ride on a sunny chilly evening! It got cold here in NC!! But perfect riding weather. Tried out the new bike, I like my old seat better and my old bell! So I am going to try and switch these out before I give DD my old bike!  Happy EAster and Passover for those who celebrate!

ktym

 Happy to hear everyone doing so well.  I posted this on the weight lifting thread and had to post it here too.  3 years, and months and months of LE therapy later:  DH hugged me the other day and said whoa! I can feel muscles in your arms! Music to my ears. I still wish I was lifting more but am so excited to be making some progresss finally. I used to have great muscles and lifted so many pounds more than I can now I hate to think about it, but, that felt like such an accomplishment.  The work changes are going well.  The hours a little more controllable and I love love love a couple of the new projects that I am on. I look forward to going to work again. 

The weather here has been cool, but unusually sunny so getting out for walks with DH is a favorite right now.  Can't wait until it is a little warmer.  Last year flowers didn't get in I was heading into and recuperating from surgery.  This year I'm feeling better and can't wait to get things planted