January Mastectomy

ah,, nuts... grdnsive....sorry to hear that....

grdnslve - I had to laugh when I read about your hunting vest -- that is a riot!  And also a great way to cover up.  I'm with you on the chemo.  No radiation as yet.  What about a fishing vest as a way to cover up?  I'm wearing a lot of fleece jackets, which are warm, zip up the front, and are bulky enough to cover all.  As for Tamoxifen -- my onc said that chemo may shut down my ovaries, but the estrogen tends to come back once you stop, so it will be Tamoxifen or something else when I'm done with chemo and Herceptin.  Even without breast tissue, they want to be sure those estrogen receptors get shut down.  I start my chemo on March 3 - finish June 16.  So I should have hair by my birthday in September!

yall are wonderful--sorry i had to bitch earlier..i felt so spunky & confident when i woke up from surgery this just was not a possibility in my little world.

frosty--silly me i thought i had found a fishing vest until hubby pointed out those cool little pockets for the shotgun shells--i was thinking lipbalm holders & you know those skinny tylenol bottles..and the back is in two pieces, so i was digging how ventilated it is, until hubby explained it is where you put the ducks..that you shoot..with one of the shotgun shells....one of my hubbys friends likes to refer to me as being unconcious.  i don't know why.......

hubby bought me chocolate when we left the doc...bless him..he is on day 40 of a strict diet with no booze & buys me chocolate.  i found him on the internet....no lie.

so now that the vortex of the emotional tornado is lifting a tad...what are thoughts on clinical trials?  i have to make some decisions as there are several choices on the chemo.  i have no problem being aggressive...i only want to do this once, so bring on the big guns..but he mentioned clinical trials as i would be a candidate..

Hi, Robinlbe and Faithandfifty now my music sisters! Robin, what a horrible Fall you have had to endure. I understand the part about finding out days before school to move your room. I even had to do this once in October, after having moved into that room in September. Yes, I teach the beloved 7th grade in a huge district. I don't understand why moving from block to period scheduling would result in a loss of staff. I am in a middle school and block scheduling exists for most classes but not music as of this time. Where do you teach? Back to mastectomy issues. Yes, I am still sore and tired but sooooo much better than last week. If I go back next week, I only missed 1 week of the new semester and most of the plan is introductory. the following week is break and the week of the 22nd I'm hoping to be back at everything fulltime.My first fill is Monday the 8th, slightly later than usual due to my hematoma on the 12th.I agree, that your position requires much more "hard labor" than mine! My biggest concern is accompanying, have barely touched the piano. I find any kind of repetitive stress very tiring to the muscles.

Faithandfifty! Have you ever been in the Syracuse,NY area? Your job sounds so interesting and rewarding. Perhaps we've met!

Dear Grdnslve, I'm sorry to hear your news. We are here for you we are all in this together sister. Its our battle. Keep smiling. Tomorrow is a new day.

Courage and Strenght,

Donna

tngolfer

gonna have to change your name now.  so was wondering if you are doing any better on the sleeping.  i seem to fall asleep ok, but can't sustain it for more than 45 minutes at  a time.  really don't want to take any more pills, but am just so tired it feels like i am hovering on the edge of depression.  why would any of us be depressed?

my onc asked me to write a letter to the medical center regarding some issues.  was wondering if i could get some imput as to the most frustrating , hurtful, or confusing incident when you all were first diagnosed and how that was handled.  we are hoping to get some protocals either in place or changed regarding the way newly diagnosed patients are processed (or not)--perhaps letting me know the most helpful incident would also be good.

my husband bought me a darling papillion puppy a few weeks before all this started..idea was to get him started on potty training before we left for arizona.  then when i was dx, the point was to get him potty trained so hubby could handle the going out.  so i trained the little devil to ring a bell hanging on the door, then when he goes out & does his business, he gets a cookie.  it was working quite well, but now that hubby is in charge, the little man is ringing the bell  a LOT and not doing his business--just wants the cookie.  hubby says he is spoiled..not sure that is the problem, but it is frustrating for one of us..the other just hand feeds the dog & giggles a lot.  must say, a nice warm cuddly puppy does wonders for crying jags.  

faithandfifty--envy your faith, you sound so much like this angel i know.  keep up the good fight and thanks for the hugs--you too kat, ariesrottie, formykids, frosty & robinlbe. it is hard to explain how wonderful it is to be able to talk to you all & read your posts.  i have friends that are there for me, but i am always the strong one, so seems somehow i need to comfort them.  this is different.

get the drain out today & see the surgeon...hope he doesn't have more bad news.  kind of afraid he will want to do more surgery...kind of thinking i'm saying noway...going with the onc from now on.

have a good day ladies, and truly hope you will offer some input on your dx & scheduling experiences. 

paula--thanks for the nice thoughts--can you come do my hair????  maybe if i put the puppy in the crate for awhile i could get hubby to give me  a backrub...what do you think??

You are all amazing ... I agree with everyone that this group is incredible ... we can rant and rave and it's okay.  Which is nice, because my family gets tired of it.  I feel very fortunate as my surgery and recovery has been simple and relatively easier than many of you.  But I know my challenge is coming.  I start chemo on March 3.  Oh boy.  My best to all of you ... it's another beautiful (meaning no rain) day in Seattle, so I'm off for a walk.

tngolfer

i totally agree with you, and the advocate issue is exactly the point here.  the local cancer center has a patient facilitator that is wonderful--but nobody told me about her!!!  no one called me for follow up appt, the surgeon, nothing--i did all my own calling, and the few times they did get back to me was literally after i had the proceedure at issue done somewhere else.  i found her by a fluke regarding another issue.  she was so frustrated because the providers aren't utilizing her.  i am furious.  it would have made this past 2-3 months so much easier on me (& hubby) emotionally, but more than that it could have been much more productive.  how do i know that the cancer wouldn't have been in my nipple or lymphnodes if they had just been on the ball & did the surgery in dec. 

sorry about the rant, but i appear to be moving from frumpy to fiesty.  anyway, thanks for your thoughts & if you wouldn't object i would like permission to use part/all of what you said in my letter as well, so it isn't just me.  and still would like responses from the rest of you.  frosty, i am so glad things have moved well for you, and if you could maybe pm me with a few particulars of what helped things go well, they need to hear that too.

thanks all--naptime

Hi Ladies!  I've been gone awhile and just got caught up on this thread. 

grdnslve-I am sorry that you now have another hurdle to face. Strength and Courage !

 TNglofer-I had the same situation at diagnosis.  I had a couple of friends of friends who had BC who called and talked with me.  It really helps so much.  I actually went to my PS this week for my first post op appt (lost 2 more drains! only 1 left).  My PS asked if I would mind talking to a new patient who is recently diagnosed and is debating implants vs. diep.  Also asked if I would be willing to show her my 'new' breasts.  I agreed and she came in and had that shell shocked face that I am sure we all had early on.  So, I explained my surgery, recovery, ect. and showed her my new breasts.  I hope that in some way, I was able to help her as others have helped me.  I told her husband he could look to, but he wouldn't even come in the room    I find that at this point I have no modesty and show them to just about anyone that wants to see them.

I am now day 11 post surgery.  I have stopped taking all of my meds (except antibiotic).  The pain meds made me so loopy, I just couldn't stand it.  My surgery was long, 14hrs, and I had to have a couple of units of blood.  In the hopsital my BP was really low, so I felt crappy.  Once they fixed that, I have felt pretty good since.  I stayed in hospital 5 days (usual for diep recon so that they may monitor the tissue).  The staff at the James Cancer Center in Columbus was really wonderful.  They really went out their way for me and my family, so it made the stay bearable.  The recovery is not nearly as bad as I feared it would be.  The last two nights though, I have been unable to sleep.  Not sure what is going on with that, but I am like grdnslve in that I fall asleep but only stay asleep for 45 min or so.  Very frustrating.

I visited my BS this week also.  Final path, all dcis, clear margins all around, no nodes involved. He says he will not need to see me now for 1 year -( that kind of freaks me out).

Never Surrender ! 

Never Surrender -- I totally agree on the modesty issue!  I walk into a doctor's office and automatically take my top off.  I surprised the technician one day when I just whipped it off with her in the room.  But, geez, I spent one day where I met with 5 different people and each had me weighed, blood pressure, temperature, and a look and feel.  I told my husband I felt like a stripper --

Grdnslve - glad you are pulling together information for your area.  I use Virginia Mason and when I first heard I had DCIS cancer, I got scheduled with the whole "breast team" - BS, radiation oncologist, medical oncologist, genetic counselor - they gave me a notebook that walks you through the whole thing (you can see it online at https://www.virginiamason.org/home/body.cfm?id=1021).  One thing they are missing that I want to work with the nurse is what happens after the surgery -- not the drains, but how you feel, the scar, the pain.  I feel that is the one thing missing from all the discussions and I'm so thankful for this board!

frosty--

the cancer center up here was wonderful about giving me a little tote bag with all sorts of goodies, including the wonderful notebook-which included the website for this discussion board.  the problem was my pcp office dropping the ball and not sending me to the cancer center...they didn't send me anywhere.  they still haven't called me to schedule an oncology consult (wtf)  good thing i know how to dial a phone. 

thus my mission--to make the medical clinic aware of how easy it is for their staff to just ooops delete some poor patient and leave them on their own.  crud...if i wasn't such a b__h i might have slit my wrists by now....like i'm letting anyone off that easy.. 

Kat - that is awesome!  Not only do you have the opportunity to know if chemo will benefit you, you will be helping all of those that follow.  I will keep my fingers and toes crossed for the 30%. 

Morning love and hugs to all {hugs} I am so grateful we got through the month of January together. We almost need to change the name of the group to January Mastectomy Recovery!  Happy to see all the good reports on people.  Good for you grdnslve for advocating for yourself!  And I know what you mean about 'paying it forward' Kat. Prayers for good news on the 19th. I am off to meet the oncologist for the first time today and hope to have my pathology report. I feel good, strong and ready for whatever he tells me.  Love you all :-*

Hi Girls! Hope everyone is feeling better today. One day at a time. Yesterday I also went to the oncologist and my tissue was also sent to oncotype DX. I guess in a way it is better for us. They also want me to go for a genetic consultation for my mom had ovarian cancer and I have a 21 year old daughter. What ever will help to keep us healthy. I also like the idea of us being a recovery group. Its amazing we are all going through this together from all different part of the US and I feel that I have known some of you for years. Just being able to go through this with everyone and how it all brought us together. Sharing our stories and our feelings , hurt, confusion etc.......Still have 2 drains from the implants. I have a lot of drainage. Is anyone else experiencing almost 60  plus cc for a 24 hour period? Hopefully by Monday I will be able to get them out. I have been sleeping well at night because I try not to nap durning the day even though i am tired. I find that it takes me some tome to fall asleep but once I do it is better.

Kat,  like I said you and I are ruining in the same path... Keep up the good work.... Everyone Courage and Strenght. We are getting some snow tonight. Maybe I will start a new book. Feel good my sister.

Donna

Definitely -- it feels like we have crossed one major hurdle and recovery sounds great!  Kat - you asked for our names:  I'm Brenda.  Nice to meet you all!