January Mastectomy

Kat,

Clean for the cleaning lady.....DON'T DO IT!!!!!!  (but I totally understand).  As for the sleep issue which is a tough one for all of us.  Try some benedryl.  My surgeon recommended 50mg at night.  I took 25mg (and it worked for me, but I am a lightweight). 

Tiffany, you are so right.  I think we have all been amazed and surprised at who in our circle of family and friends will be the best supporters for us.  I have a really close friend and I was just amazed at her response; it was kind of a cavalier "you are strong, and lots of people get through this"....not what I needed to hear.  I think we have all learned as we travel through life that sometimes the best friend just offers comfort (and certainly not advice about something they have never experienced).  Surround yourself with those that comfort you!!

Off to the onc today!

Marianne

Hi Cornellalum...

Are you taking your Keflex?  Maybe ask the BS if he wants you to give yourself a bolus dose...i.e. take 2 instead of 1.  If you start running a temp he may want to give you a shot of rocephin (in your butt) and/or pull the drain so don't mess around with an infection! 

Good luck!
Kat

Kat - I assume that Keflex is an antibiotic? I was never given any antibiotics after the surgery.  All I am taking is percocet.  I am now 10 days past surgery.  Hmmmm, maybe I better go see the doctor today, huh?  Thanks for your reply.

I had planned to open up just one day at a time.  On Wednesday morning, when my husband awoke and went to get the paper at 6:30AM (still dark), there was another gift on the porch.  He came upstairs and said, "you'd better get opening your gifts;  there's another".

 Day 6 - On the 6th day of Christmas, my true love gave to me, six geese a laying.  YOu really wouldn't want six geese making messes everywhere, so we've left what the geese have laid with tender loving care."  This represented the six days of creation.  There was a cute little basket lined with fabric with GEESE....with six plastic eggs filled with hershey kisses, laying on a bed of mints.  That day a little sheep and a verse came for the nativity set.

The next morning, there was another LARGE pink bag awaiting on the porch - again before the sun had arisen.  Day 7 -  On the 7th day of Christmas, my true love gave to me, Seven Swans a-swimming.  On the 7th day of Christmas, my friend gave to me: a reminder of the HOPE that Jesus gave to you and me!"  This represented the 7 gifts of the Holy Spirit.  This pink bag was FULL of packages all wrapped in pink - a pink snuggie, a pink fleece blanket, a pink fleece scarf with the pink ribbon symbol, pink socks, my PINK MUG that I'm drinking from, the words HOPE and FAITH that now sit on one of my window sills, a pink neck pillow, and so, so much more.  A little donkey and verse came that day.

The next day, again before day and in near zero temperatures, my husband found another package on our front porch.  Day 8 -  ON the 8th day of Christmas, my true love game to me, Eight maids a-milking.  The eight maids are through milking and they've left a reminder or two, they want you to know we are still thinking of you!"  This symbolized teh eight Beatitudes.  In this bag was a gift card to Dairy Queen, and five travel mugs (there are five of us in our family) and a special kind of hot chocolate in each mug.  There was a shepherd and a verse.

The following day, which was a Saturday, there was nothing on the porch.  And I was ok with that.  I was so thankful that whomever was doing this had been so thoughtful to help me through these days while I was awaiting surgery (my surgery was Jan. 6 - ephiphany day).....HOwever, that morning, about 10am, as I was getting ready, I was just looking out my bedroom window which faces out front.  As I was just looking, I saw this young girl in her late teens, kind of sneaking with something in her arms, coming toward my house....then my dog started barking.  At that, the girl took off running toward my house.  And then, I saw her head back in the direction from where she had come.  I, of course, was curious.  So I stayed at the window to see what kind of car would come from that direction.  After about five minutes,  a car (that I have never seen) drove by the front of my house VERY slowly.....I didn't recognize anyone inside.  A couple of minutes later, my phone rang, and a young voice said, "check your front porch", and then hung up.  I did so, and there on my front porch, was a beautiful basket with gorgeous fruit!!!  Professionally done!!  Day 9 - On the 9th day of Christmas my true love gave to me, Nine ladies dancind.  On the 9th day of Christmas, a friend left for you:  A tasty reminder of the nine fruits of the spirit for you and your crew!'  This symbolized the fruits of the spirit.  And there were NINE different kinds of fruit.  And there was a wiseman and a verse inside the basket.

more to come.....

Kat:

I'm a few posts behind but wanted to comment on your question about the sagging TE foobs...  When  I went in for my first fill my PS pressed on my foobs and asked if they were getting softer, which they were (although not necessarily sagging) and he said that meant that they were ready for a fill!  So, you DH was correct!  And believe it or not, my foobs are starting to soften up again, I didn't think that it would happen after my 150 cc's fill, but must be they're getting ready for the next fill on Monday, although it won't be another 150 cc's... 100 tops!

I am actually on another trip right now.  I am at the Cancer Treatment Center of America in Illionois... a very good friend and neighbor was diagnosed with BC about a month or 2 before me and this is where she has her treatment so I came with her for her 2 days of tests and appts.  It is an amazing place, I have to say!  Everyone here is very nice and helpful.  She was the reason that I requested my mamogram this year that detected my DCIS and she happened to be sitting with me when I recieved my call with the bad news.  So, we are getting through this together.  She came today thinking she would be meeting with her PS to schedule her reconstruction (she had the Bimx without recon. in Oct)... but found out that he is not available now until June, so that was a little disappointing, but as with all BC stuff, ya gotta go with the flow.  Anyway, after her appts today we are headed to the mall for some shopping therapy and the to the Rain Forest Cafe for good food and margaritas!!!  Blessings to all and here's hoping for good news and good test results!

Oh, just wanted to comment on one other thing... I have been telling every that I have a new theory...  You know how men think with their, um, p......, well, I have decided that apparently my brains were stored in my breast tissue, because they are gone!!!!  (will finish later, on to next appt!

Paula

Hey all -- Robin I love your secret 'true loves'  What a great way to wake up each morning!

To the poster asking about foobs:  I got my foob last week, 4 weeks out.  It really depends on your healing.  My scar is healed and I have no swelling or pain, so she said go ahead.  I tried the regular foob, but went with a new model that is whipped silicone, so it is not as heavy.  I don't even notice it and it looks great.  You can wear it with a regular bra with or without a pocket.

I feel guilty about the weather -- here in Seattle we have had absolutely gorgeous weather.  Even at the beach.  It has been sunny and in the upper 40's mid 50's so I've been out walking every day.  I find the walk makes a difference.  That and my Wii -- love the exercise program!

Just doropping in to offer hugs and love {hugs}  As I read I keep thinking, oooh I can post to her and her and her etc. I would be typing all morning and I don't want to leave anyone out. Just know that I am keeping you all in my heart and prayers {hugs}

Hey Jan buddies I am sorry I havn't post lately I been having  some boo-hoo days.

I appreciate reading your post It help me get thur rough days!

I am now 18 day post -op today & still have both drains  too . They driving me crazy, But still haveing 55 cc in one today. I can't figuire it out. The surgeon wont take my out til under 25cc & he wont start filling expander until both drains out.

 Are any of  my TE friends having Rib pain. The expander is causing sharp pain  in my ribs.  Sleeping on my Back doesn't help I am trying pillow for sl releif.

 I do hope you all are getting stronger every day!

Hugs to all

Gina

Robin - Wow!  You obviously have touched many people and they wanted to lift you up at such a hard time.  You are truly blessed!  I am very glad to have you back with us.

Ok all, I am having a little problem now.  Last week, my last drain (in my abdomen) was accidentally pulled out.  It was still putting out about 100cc per 24hrs.  I went to PS and we were hoping my binder would keep fluid accumulation to a minimum.  On Monday, I started noticing a bloated feeling.  Tuesday night, my tummy would get upset if I sat upright and the bloating feeling continued.  This morning, I could actually push on one side of my abdomen and watch a "wave" go across to the other side and then feel it swoosh back.  So, off to the PS.  My PS was in surgery, so I had his PA and another PS from the team.  They estimated that there was at least 100+ cc sitting right in the center of my pelvic area.  It is right behind my incision, directly below my belly button.  They decided it must be asperated.  After numerous sticks without much success, they only manage to get 30cc or so out.  Apparently, because of how it is sitting, it kind of swishes around and it isn't really contained to one area.  So they were pushing and pulling all over my abdomen, while PS is repeatedly jabbing trying to get this fluid (they did numb me, so it didn't hurt).  It was finally decided that since there was so much left, and they can't get it, I am going to have to have a drain put back in.  Apparently, I will have to have a CT and a radiologist will pinpoint the spot, drain it, and then place a drain into the area while I am still in CT.  UGH!  I am so disappointed!  I was doing so good and really felt like I was cruising through recovery. 

On a good note, while at the PS, I had 3 new people see my recon breasts and all were very impressed.  I keep focusing on that (I will have beautiful boobs at the end of this) and am trying not to let the thought of having to have this drain implanted freak me out.  They are also going to test the fluid they took (checking for infection I guess). 

I have been having dinner delivered every night by friends and a scout troop.  I was actually going to call and stop them, as I was feeling so much better.  Now I think I will hold off until after this drain thing is worked out.   

Burley, it seems there is always someone that you expect to be "there" who just isn't, while someone you wouldn't expect really steps up.  My sister was really there after my dx, she lives in another state, so she called and emailed. She took time off and came to town and was here for my surgery.  She had to go back 2 days after my surgery.  I have not heard from her since - not an email, text, phone call -nothing-

On the flip side, I used to babysit a boy in my neighborhood - he was so bad and destructive at my house - it just didn't work out and his mother and I mutually agreed he should go elsewhere.  We were never friends and just do the "hi" wave when we see each other.  She has brought dinner to my family every Tuesday since my surgery, and is signed up to do 3 or 4 more.  I guess you just never know who it will be that steps up when you are in need.

There is a song by Kelly Clarkson called Save You.  It sounds to me like it is coming from the point of view of a friend who bales when the other is having a crisis.  When I hear that song, I kind of apply it to my sister and it helps with my frustration with her.

Holy cow am I long winded tonight

Burley,

Just wanted to add what others have already said.  Sometimes, for reasons we may not know or understand, some people just can't step up to the plate.  Sometimes it is just ignorance; they don't know any better---though I don't know how you can give your mother-in-law a pass on this one.  She's been there!  I know it hurts and makes you mad, but save your energy!  For every disappointment, there will be a surprise like "never surrender" said.  I, too, have been surprised by the acts of some relative "strangers" and also disappointed by some close friends.  The only lesson here is that we know we will never disappoint the next one diagnosed.  WE will understand and do the right thing.

I also hope everyone will sleep well tonight.  I will try to put that 5% in perspective! 

Prayers for all

Marianne

Wow...the strength from this group never ceases to amaze me. 

Marianne, I think you got some really positive numbers.  That's right...5 percent.  In the same time frame where they're going to watch you like a hawk.  Sleep well and keep this calm strength that you have, and the right answers will come to you. 

Night all
Kat

Sally! ahahah! That made me smile

Robin,

The reason that chemo will only make a 5% difference in my case is because my tumor was ER+, which, of course means that type of tumor will respond well to the hormone therapy.  If it were not ER+ it would respond better to chemo.  The doctor really explained it well and actually has a computer program, called Adjuvant Online.  He enters some patient info (age, ER status, tumor grade and size, nodes [+ or neg], what type of chemo he would use and what type of hormone therapy he would recommend, and it calculates the effectiveness of the adjuvant therapy. 

I was impressed because he answered some questions before I even asked; like what if I just walked away today (haven't we all thought that?).  That answer, in my case, was if I had no additional therapy I would have a 56% chance of being alive and cancer free in 10 years, a 35% chance of a relapse and an 8% chance that I would die of other causes (like driving back and forth to doctor's appointments!)  I know I can't live with that 35% risk of relapse - so doing nothing is not an option for me.  By adding the hormone therapy (Arimidex for 5 years), it lessens the relapse rate by 17%, meaning an 18% chance of relapse with hormone therapy.  If we did only chemo (no hormone therapy) it would only lessen the 35% relapse rate by 8%, making the relapse rate go from 35% to 27% (still too high for me).  If I chose chemo and hormone therapy, the relapse rate would go from 35% to 13%.  So the big question is can I live with a relapse rate of 13% (with chemo & hormone therapy) or a relapse rate of 18% (with the hormone therapy only).  

Donna, you're right.  It all boils down to whether a 5% reduction in risk is worth all the side effects of chemo.

I am going to try and relax for 2-3 weeks and wait for the Oncotype Dx report to come back.  I understand that these are just numbers.  No matter what the % of relapse, we never know if we will be in the minority despite all our efforts or beat the odds. 

In the meantime I, of course, will research the side effects of Cytoxan and Taxotere (the recommended chemo).

I am sorry for any complications that my cyber sisters are facing.  Always remember this is your life.  Don't worry about calling your doctor's office for any "little thing".  These are not "little things" we are going through.  Most doctor's should understand.  If they don't, find another doctor who does.  Remember, too YOU are your own care coordinator.  I don't know where I would be now if I hadn't done all the research I have, met all the people I have, and found my way here. 

The sun is finally shining, and today I am back for the 2nd fill.  I have also resigned myself to the fact that I will be dealing with all of this at least, though June or beyond.  Glad my sisters will be there with me!

Marianne

Good morning all!  I'm sorry to see some are having problems. Sally, what a pain it must be for you to have to deal with "the wave"!  I hope things straighten out soon.

Robin, thank you for sharing your lovely story with us! It is so strange how some of the people we think will be there are the ones who aren't, while some we don't expect to help are the ones who are there for us. I have been so lucky with my wonderful neighbor. She is an OR nurse and has been there for me from the beginning with recommendations, support and help. She puppysits for us when we have to be away for my appointments, and this has been a great relief to me because both of my dogs have allergies and I don't like leaving them alone for long periods of time.

Good luck to all awaiting their Oncotype DX scores. Marianne, you sound like a perfect candidate for the test. I think you are wise to try to put it from your mind while awaiting your score. I know to chemo or not to chemo is a hard choice, based partly on need and partly on your own comfort level. I'm in a different position than you, so even with a low score of 11, I chose chemo. I'm two weeks into four rounds of Taxotere and Cytoxin, and quite honestly, my side effects have been so minimal that I don't even feel as if I'm on chemo!  My onc chose those drugs in part because they don't have the potential for heart problems that other drugs have. I hope everyone awaiting Oncotype DX scores gets those low numbers! 

Take care, all!

Cindy