Starting Chemo in JAN 2007

Well, I did see turtle faces! Especially in church today...the article was posted on the lobby bulletin board! But it also brought some survivors to the signings. One was the sister of a guy dh and I graduated with, she is 53 and nine years out from bc, she had a mastectomy at stage 2a and has had no problems since so it was cool to talk to her. She bought one of my books as a present for her bro, and one for herself. Anyway, I guess I am officially "outed" as everyone in two counties reads that paper and it was on the front page. Tina, could I come to DC and just be anonymous with you? :-)



I am right now baking cookies for the nurses for my last Herceptin tomorrow. Now that chocolate chips are known to be good for you, I guess they could be considered health food. DH is launching his fishing boat for the first time this year and DS is doing chores at his grandparents house, Grendel is being uncharacteristically quiet so I decided to quickly visit my Ta Ta's. Hope you are all having a great weekend. Next Sunday is Mother's Day already! - Skye

Skye, I'll add my condolences to everyone else's.  It must be hard enough to keep your business from being everyone else's under normal circumstances.  I'm surprised this hasn't happened before, given your celebrity status, but now that it has, I'm sorry you were subjected to turtle faces again.  On a more positive note, congrats on your last Herceptin tomorrow!

I was talking tonight with one of my bc friends - I'm trying to get her to write a post addressing the issue of plastic surgeon versus reconstruction surgeon.  If she doesn't do it, I will, but she is a nurse, has had reconstruction, and has more time that I do right now.  I was hoping we could save some people who are newly diagnosed from ending up with bad results because lack of knowledge about how to choose who does their reconstruction.  People just trust their first surgeons, or their PCP's, or whoever it is who is handling the initial diagnosis - I know that I see so many people in my job who are heading down the wrong path, and I can't say anything to help them.  I was thinking a heads-up post might be helpful to the newbies on the board - what do you guys think?

My mom called today - she has unearthed a treasure trove at her house - boxes of letters and artwork from my childhood up through young adulthood.  Letters from camp, letters from college, letters from when I first lived in Houston in the 70's, all kinds of things.  She's going to send me a box of stuff to read while I'm recuperating.  Does that sound like fun or what? 

I've had a nice quiet weekend with Larry out of town for the weekend (he went to the Dallas area to do the MS150 bike ride).  Harrison and I have just been hanging out and taking walks.    Went to a co-worker's wedding last night, which was nice, but I felt guilty being there, since she invited some people and not others, which hurt some feelings. 

Hope everyone has a good week coming up.   

HI,

We just got home last night. We hit tons of traffic at the GW bridge in NY- it took 1 1/2 hours to get across. Rebecca- you have the best gas prices. We waited in line at the last rest stop on the turnpike for 1 hour to get gas at $3.45 a gallon- such a bargain!!!

I had my second to the last hercepton this afternoon- then picked up our mega mail. Oy!! It will take me a week to get through it, but I picked through the important stuff. Meri is coming home on Friday to pick up our car, so we are going to be looking for another car this week- either a civic, corolla, or a hyundai sonata. We are spending money like it is growing on the trees- and it certainly is not!!! Double oy!!

I haven't had a chance to read any posts yet, but I had to check in. I hope everyone is doing fine.



I just read briefly this page right now.

Skye,

I am sorry you had to put up with the turtle faces, but as Tina said, maybe it was a good thing reconnecting with some local survivors. Congratulations on your last hercepton!! Free at last!!

My last one is May 29. I guess I am the last one.

Tina,

It is nice you are sharing this stuff with at least one new friend. Sometimes you will need to vent and have someone understand what you are venting about.

I am so glad Jaclyn and Pauly and you are adjusting so nicely. Your neighborhood sounds so nice and friendly. It is so much easier to meet the neighbors when you have kids.

Mel,

I think your "heads up" post idea is a great one.

What a treat you have in store for you. Reminiscing while you are recovering will be fun and relaxing. That is a great present. I wish my mom had saved all that stuff. Sounds like you had a fun weekend.

Caya,

How is your new washer/dryer set? Are you having fun playing with it??

We will be almost finished with hercepton. Your last one is Thursday, right? I think it will be a mixed blessing. I have some apprehensions, but I guess that is what effexor is for- and sometimes attiman.

Amera,

I am glad your dad is doing well.

Your lump is probably related to your cycle. That makes a lot of sense. It is still hard not to worry.

Joni,

How are you doing??

Lynn,

How are you? How long did the doc say you will be sore from the lipo? I hope you feel better soon.



I will go back another page later- meanwhile, I hope everyone is great. have a great night.

Love,

Viddie

Caya, my main purpose in going to the wedding was to check out the flowers at the church and where to put them.  I'm sure the lady in charge of rehearsals would have told me, but it's too early to ask her.  Since it was really close to Easter, the church was full of flowers and they didn't really need to add any.  The flowers matched the bridemaids dresses somehow.  I think we will luck out too in that my son's wedding is still in the "Easter season" and just before Pentecost so the church should still have some leftover flowers and such.  I guess you just play it as it goes.  I got a good idea for the first reading though.  I saw they didn't use a unity candle anymore (I guess that's old school now)  They had a trumpet player for the entrance which was nice.  

Mel, I searched and searched posts when I was trying to decide on reconstruction so I think anything you could add would be helpful.  Part of the problem is referrals.  Our BS refer people to plastic surgeons they know and then there is the whole insurance problem.  For me, radiation had some concerns too with the whole reconstruction process.  I think it came down to the fact that it wasn't really that important to me to go through more surgery.  Everyone has to weigh their options and their situation.

Amera, I am glad that your dad is doing well…and I agree with the others, if the “area of interest” (or of dread, depending on how you look at it) has vanished, it is very likely related to your cycle.  What a total drag though…hugs to you.

Caya woohooooo on the W/D.  I love front loaders…watching the clothing swish and swirl is so mesmerizing.

Welcome home Viddie!  Yes, we have good gas prices here, but we burn so much of it sitting in traffic that I think it evens out.  YECK.  I had a memorial service to go to on Sunday in Brooklyn, and according to google it was 30 miles and should take us about 45 minutes to get to.  Well, The traffic was so bad on Staten Island that we wound up turning around and going home after an hour and a half.  It only took us about 15 minutes to retrace the route that took us all that time to traverse…pathetic.  I would gladly pay more for gas in exchange for being able to get somewhere that is only 10 miles away in less than 40  minutes.

Skye congrats on the last Herceptin!  The finish line at last.  I am glad that your heart is good…but we knew that anyway xoxo

Mel your idea about a post is a wonderful one.  I have had no end of trouble, and one of my problems was not knowing how to select an appropriate Dr, or what questions to ask.

Mary you sly dog…glad you got into a wedding to snoop and that  you got good ideas.  Definitely sounds like the fun kind of research.

Tina, the longer you are in DC, the better it all sounds.  I am so glad for you.

My little feline patient Bella has done very well from her surgery.  She slept the first few days, but as of yesterday, Evil Bella was back, as much as she could be with a radar dish on her head.  She is hating the head-cone, and the vet wants me to keep it on her until next Monday.  Poor baby is sooooo miserable.  I took pity on her last night and took it off for a bit when she assumed the position to groom her bottom and tried desperately to clean herself through the clear plastic of the cone.  It was so pathetic, and she was so frustrated so I freed her at which point her tongue went into overdrive and she licked nonstop for about an hour (under supervision lest she lick her wounds). 

Well, today I am going to see my PS and get the lowdown on what has to be done about my implant.  I am bracing myself for the worst, but since I saw my BS and he put some silver nitrate inside the cavern the hole has shrunk quite a bit.  I am not sure if that means anything, but it is now back at the size that it was in when it first opened up (it was almost a quarter of an inch by the time I got to my BS).  I am not looking forward to going there.  I will of course let you guys know what he says….in the bottom of my heart I have the persistent belief  that I am going to be shopping for a prosthesis to get me through the summer.  I hope my gut feeling is wrong. 

Gut feeling was right.  I am going in for surgery to remove my implant saturday morning.  He wanted to get me in earlier, but couldn't.  He thinks he can reconstruct again after I heal...but I may have to do expanders again, and even with that, he said that there is a possiblity that he will be unable to reconstruct me at all as a result of the radiation (which is what caused me to "pop open" in the first place.  I am in complete shock even though I had mentally prepared myself for it.  I am not sure what I am going to do, or how I will manage next week with the kids and everything.

Rebecca, we must have been posting at the same time.

I'm so sorry to hear you're going into surgery with not much time to prepare.  What did you do with the kids after your mastectomy?  Can those same people help? 

Would you consider flap reconstruction?  I believe the failures from implants/rads is much higher than flaps/rads.  I had radiation and have no problem with the flap.

Consider yourself hugged!

Rebecca, my heart goes out to you.  I am so sorry that you have to go through this.  I am sure you are still trying to come to terms with this.  It's ok to feel angry!  Let us know how you are doing.  Love and Hugs, Mary

Rebecca - I am so angry, upset and frustrated for you. I can barely imagine how this must feel after all you've been through. What a nightmare. It seems so incredibly unfair to lose a breast for a second time! Do you have help lined up yet for next week? I have two prothesis that I don't need - any chance we're the same size? They are sized funny - but I guess they would compare to a B or C cup. I know you are fed up with plastic surgeons and insurance - but my ps does have an office in NYC and he's fabulous. He was out of network for my insurance but I ended up getting coverage. I didn't have that much tummy. Also - they can take tissue/fat from your butt as another option. Something to think about maybe.

Joni - you OK?

Lynn - when you feel like it please post more details for me. I'm scheduled for stage 2 on Monday and I don't have a clue what to expect. I'm hoping he won't do anything to my tummy. Should I expect a lot of pain? I have a work conference call scheduled 2 days afterwards - is that nuts? Or OK? And....seeing that its 80+ degrees here what are my clothing options going to be? Also, I'm not sure how many days of kid-to-school back up plan I need to arrange. 

Melia - ROTFL about the extra fat.  Me too Rebecca, I would gladly ship some fat down to you also.

I wish I lived near you Rebecca - I would definitely come over to help out.  This whole thing totally sucks - have you asked the PS about the latismus (sp.?) dorsi flap - that's where they take the muscle from your back and swing it under your skin to your boob... My GP told me she had a patient who had it done and it was fabulous... of course it has to be done by a supreme expert reconstruction PS, and sometimes they have to put a small implant in as well.  Just thinking out loud here.

I've been busy here - between the W/D delivery getting screwed up - Sears was supposed to deliver on Monday between 9-11a.m. - they did not come until 4:00, and then the guy drops the new dryer on my driveway - I told him to take it back, so they just brought in the washer and reconnected my old dryer. They can't bring the new dryer until Saturday.  So for all my aggravation they took $300. off the price of the pair (very nice) - and the washer is amazing.  I can't get over how clean the clothes are.

The accountant hunt is great - We saw 3 excellent candidates sent over from a personnel agency.  They all had their strengths, and we will decide tomorrow, but I feel more at ease knowing that we will have a good person doing it for us.

Skye - congrats on finishing the Herceptin.  It must seem surreal.  I  am so looking forward to doing Thursday.  I have arranged to have lunch sent in for the nurses (about 10 of them in the chemo room) from a restaurant called Cultures - they do nice sandwiches, veg and dip tray and a dessert tray of fruit and pastries and beverages.  It's very reasonable, about $100 + tax for the whole deal.  I really wanted to do this and I think they will be very surprised.  I only told the "head" nurse and she was so appreciative. 

I will also ask how often I will have to go down to have my port flushed, and Skye my onc. told me he wants me to keep it in for a year.  I was not too thrilled, but it doesn't really bother me, but I guess the shlep downtown to get it flushed will be a pain. I am going to ask if I can go to my local hospital up here in the 'burbs.

Lynn - have fun at your "unveiling".  I'm sure the girls look great.  Jan, good luck on your stage 2.

Joni - how are you?

Mary - the flower situation sounds great.

xo ladies, gotta do another load of laundry.  The cutest thing is that when a washer cycle ends, this little song plays to let you know the cycle is finished. 

REbecca, I didn't have enough "fat" either for the flap.  I looked into the latimus flap but was discouraged because you come home with four drains and I was no sure about loosing back muscle to gain a breast and how it would look/feel. 

Rebecca, they do have IGAP and SGAP where they take the fat from your butt when you don't have enough belly fat.  Just something you might consider.  We'll be with you on Saturday!  hugs! Oh, and yes, I am still going to NJ next week, but it ended up being only a day trip, leaving Boston at 6am into JFK, renting car and driving down to USGA, meeting from 10 - 3 and then back to JFK for 5:30pm flight back to Boston.  I was bummed when I found out we aren't staying overnight.  If we get the business from them, there is the possibility that I would go down there again! I'll let you know.

Jan, yes, I will take some time and post details for you and Viddie (and Mel) about my stage 2.  I'll try to get that done tonight since I return to work tomorrow.

Hi Jan, Viddie and Mel, here are the details about my stage 2 DIEP:

I had the following as part of my stage 2: lift of left breast, flap revision of right breast (scar), revision of port scar, revision of dog ears to both hips, fat graft to right breast, nipples on both breasts, lipo to abdomen, flanks and hips.

lift of left breast: scar below breast and up to areola, pain 0 out of 10, have no pain for those incisions; happiness 10 out of 10, the breast is nice and perky!

flap revision of right flap: not sure how he did it, but he moved my scar on the right flap; pain: 2; happiness: 10, there is no longer a crease in my right breast

revision of port scar: my port scar was really ugly and I asked my PS if he could fix it: pain: 4; happiness: don't know yet, will know when the scar heals.  Anything would be better than it was.

revision of dog ears: he took out the dog ears, there is now a incision of about 1.5 inches at the end of the abdomel scar; pain: 5; happiness: 10, have my normal curve back on my hip without the dog ears

fat graft to right breast: the right breast was smaller so he injected fat into it to increase size: pain: 0, I have no feeling in this breast, happiness: 8, the size looks about the same as the left breast, but the entire breast seems to be moved toward my armpit, compared with the left. I was always like this, but seems more exagerated now.

nipples: My PS does the cv flap to make the nipples.  pain: 0; happiness: see below when I discuss the unveiling.

lipo: I asked him to do as much as he could while I was already in the OR and insurance would pay. There is severe brusing, black and blue like I've never seen; pain: 8, this is BY FAR the most painful part of the recovery; happiness: 8 it's hard to tell since there is still some swelling, I assume it'll look great once I'm healed.

The surgery was 3 hours.  My PS came in right before the surgery and did a bunch of measurements and marked me up.  I woke up with a binder around my abdomen.  I arrived at the hospital at 6am, surgery was supposed to be 7:30, but I think it ended up being around 8am, I woke up in recovery at 11am and we left the hospital at 2:30.  The 2 hour drive wasn't at all as bad as it was after stage 1.

All the incisions had gauze with water proof plastic stuff over it. I could take a shower anytime.  I am on antibiotics for 7 days, percecet for pain and the usual stool softener and senna that go along with the percecet.  They told me to take my meds after surgery, so I held off on the tamox and effexor until I was on my way home.

Jan, what are you having done is stage 2?  If I didn't get the lipo, it would have been so much easier since I don't have much feeling in my breasts, so the only pain, which is minimal was on my hips from the dog ears and my port scar.  If you aren't having lipo, you should be alright to have a phone teleconference 2 days later.  As far as clothes, I'm not sure yet.  I will be calling my PS tomorrow to ask what I can wear for a bra since I don't see him until Monday.

Ok, now for the best part.  We took the dressings off early, tonight instead of tomorrow. We asked my sister who is a nurse to come over and take them off.  I am absolutely THRILLED!  For the first time in 17 months, I feel whole again.  The nipples are unbelievable!!!! I thought they would be all black and nasty, but they aren't...they are a thing of beauty!  I have 2 C cup breasts with 2 fabulous nipples, perky and beautiful!  I was in tears after I saw in the mirror...the surgeries and the recovery is TOTALLY WORTH IT!

Please let me know if you have any questions.  I think I'll post this to the reconstruction board.

I'll be thinking about both of you next week and Mel next month!  You'll all do great!  YAY for us!

love and hugs,

Lynn

Oh, Lynn, so glad for you.  What a success story.  I was jealous, reading about your great results.  I wish it worked out that way for me.  I just need to be thankful to be breathing, I guess. 

Isn't it odd how onco's have such diff. ideas, i.e. Skye's port stays awhile, Viddie's goes...  you almost wonder if Skye's dr. is going on vacation or something.  (That was a very cynical comment.)  Who does the ports?  Actually, it wouldn't be the onco.  And I'm doubting it's the breast surgeon either.

Rebecca, how are you holding up?  Are they having you in for the usual labs the day before surgery?