June 2010 Mastectomy

Hi June Ladies--I have been away for 6 days and skimmed some of the posts....what an amazing group of women!  You are inspiring!

I was in Philadelphia from Sunday until today attending a professional workshop that I did not want to miss.  I did not have much access to a computer so I have missed alot. I was not able to thoroughly read all the posts, will go back tomorrow.

The workshop was great--but it took all I had to stay awake in the afternoons! The way this event was set up, we stayed in a dormitory on the UPenn campus and then had to walk to the conference site (about a half mile) each day.   I experienced alot of swelling in my breasts intermittently and it seemed related to the amount of activity I did.  When I rested, the swelling went away.  Even my "real" breast that was augmented swelled.  Anyone experience this when they over did it?

I just got back to Phoenix about 2 hours ago and my breasts are beginning to settle down after the airplane trip.  I have one more week off to recover and then I go back to work on July 26.   I hope I can do this!  I am a speech pathologist and I work with very young children.

Blessings to you all!  Going to go to bed now!  Hurray--my own bed!

I have noticed the "hot" chest in the area of the TE's. Also heard that this happens with the implants as well, and is more noticeable in the cold weather. Great...cold chests! 

I had my compression sleeve fitting today. It was very easy. The fitter took three measurements from each arm, and then went back to get the sleeves. Both of my arms measured the same, so that is good. The sleeves are so very attractive....not. But they will serve the purpose. They showed me how to put them on, smooth out the material, and answered all my questions regarding Lymphedema prevention. I am so glad I made the call and got this taken care off. Based on info I came across, anyone who undergoes bmx surgery with or without lymph node removal is at risk for lymphedema. It is so easy to get the sleeves and prevention is the key. I am only going to wear them for flying as of right now. I know I have brought this up several times, and so to avoid sounding like a broken record - that is all I am going to say about that!

Another HOT and humid day in St. Louis - great. Time to get a good book and read some! 

Speech: the problem being is in a situation like that your reflexes take over so your well-being becomes secondary.   When the drain came out, I woke to my shirt being all wet and it was like 3AM.   While waiting for my PS to call back I decided to "push!" it back in...not a good idea per my PS as it has already been exposed to the "outside" world!   I taped over it and saw my PS the next afternoon.  It was still coming out even against the tape so my long answer is I don't think generally accepted medical practice is to put them back in. 

StCards: bless your heart, woman!!!!!!   I totally forgot about the preemptive measure of getting sleeves made for flying.   Thank you so much....I went right on line and lucky for me, about 20 minutes from my house is a physical therapy group that specializes in lymphedema and the associated garments.   Speech: yes, especially when flying because of the cabin pressure and the altitude (and I don't know what I am talking about!!) the potential is there for your arm to take on water and b/c, like in my case I had several nodes removed, once the water gets in my arm, the nodes were it's path out so it very well could stay in my arm and this is what they call lymphedema.  StCards is absolutely right that all mastectomy patients should at least get them and take them to the airport with them.  Many women fly with no problem but the last thing you want is a mid-flight upset!

I am going to go put my hot boobs in front of the air conditioner!!!!!!!  It is blazing hot everywhere...I think it is 95 and wicked humid in CT today.   Again, though, to be going through all this stuff, I prefer summer especially with chemo-induced hair loss! 

Speech529 - true to my word about that subject - just sent you a pm about what I know. I would recommend everyone look into getting these if they have flying in the plans.

Ducki - I went to a medical supply store here in St. Louis. My PS gave me the name of them.

The brand I got was Jobst. What I can recommend is ask your PS about this. See if they can give you the name of a place to go. There are 3 measurements that they do on your arm(s) to match to correct sleeve and compression level. It is also best to try on before buying. And PS should be able to give you a prescription so that insurance will pay. It is a approved medical device. Also check out the Lymphedema thread for further tips. Hope that helps. 

Haven't had a fill yet, so can't help out on the other issue. But, you got the muscle relaxer right? Flexeral or something like that? That should help with the soreness of the muscle I would think. 

Lizzymack: Ha! I don't know if you made Jeanne laugh but it worked for me! And a nice stroll down memory lane, remembering those days.....You are too funny.

Like most of everyone else, no one talked to me about the compression sleeves either. Thanks, STL for this info! Good thing we have this resource and each other. I am making a list of things to ask my BS/PS when I see them, which won't be for another 3 weeks now. No fills for me probably for several months until my breast heals from the necrosis. Also, my docs didn't mention doing stretching exercises which I've seen mentioned on some of these boards, anyone else doing these? I have been getting on the treadmill - I'm up to 30 minutes at a very low pace but need to work on consistently doing it daily. I was walking an hour a day outside in the heat prior to this surgery.

Friday I made it out in my car. It seemed so simple but was a lot harder than I expected. My right side is still really sore, left seems fine, but making turns was challenging. But I did it, and my first stop was to go shopping to buy some new shirts because nothing I own works...I had bought some cheap baggy button up the front shirts for post surgery but I don't want to wear those anymore. I have a huge bandage I have to wear on the rt breast (8x10) & can't use tape so the doctor rigged up this net thing that has armholes that holds it in place, it is real cute....so I found some nice camisoles with built in shelf bra that do the trick quite nicely. I bought them in colors to wear under things. Much better than this thing that looks like a fish net stocking up to my neck. Yesterday I tried to go out again in my car but never made it out of the driveway, I guess I overdid it the day before. Tomorrow I'll be 3 weeks post surgery - I am ready to get back to "normal", whatever that is! Interestingly, i had given notice at work a week before the mammogram that led to the discovery of the Ca. I had plans to become self employed but that is sort of on hold so it will be fun to find my new normal....

Hope everyone enjoys their Sunday. Jane

Well, I decided 5 days was close to 7 and I went swimming this weekend.  I was supposed to wait until Monday- oops .  It was too nice out and I was sick of sitting and doing nothing!  I'm glad I did it, it was heaven.  I can't actually "swim"  my chest muscles can't handle the breast stroke but I can float really well  

StCards- Thanks for the advice on the compression sleeves and Ins etc.  We are planning a trip to Fl in December and I think I will check it our for myself as well.  My mother had a radical mastectomy, much different then what we have been through with a MUCH higher risk and she got lymphedema 2 years later in her arm and had to do PT and wear the sleeve.  But, after 6 months   it all it went away.  Better to be safe than sorry though. I am going to try to get one before I fly so I won't have any issues.  I would rather where one on a plan than for a year etc.  Thanks for making us think.

Jeanne, I agree, come tell us when you are down.  Although I am one to talk- I was kind of depressed for a few days myself and kept my mouth shut.  I'll talk if you will?

On the subject of body pillows- I have one I got at Sams Club, ( a bulk store in NE)  It is corduroy and Have no cover for it?  I figure my face isn't on it drooling so who cares?  With out it I don't ink I would get any sleep.  I don't sleep quite on my back or side some where propped in between.

I hope you all had a great weekend!  I am off to enjoy dinner with the hubby- he goes back to work tomorrow and is kind of bummed, which I think is amazing- and sweet!

Entertainment news!!!!!!!!  I went out yesterday for late lunch with a few friends who have not seen me since surgery so I wore those new cami's I got where if I leave all the stuffing in I look like Dolly Parton!!!!!!  Well, you all know me by now!!!!  I wore it with all the stuffing!!!!!!  One of my friends almost choked as I was approaching the table and they were all stammering and like "wow, wow!!!"  They had no clue what to say!!!!  I had the other reduced puffers in my bag so I ran to the ladies room and swapped out!  They were hysterical!  They thought that was the finished product!!!  It was just very funny!  One of my friends who has always been small was like "she gets breast cancer and she comes back even bigger than before...life is so unfair!"

JBL:the fishnet up to your neck sounds lovely!   You will get better with the driving.  The first time I went out was after rush hour, like around 7PM so hopefully all the animals were through racing home!   Now I don't think twice about driving.  Try to do a little each day because it will build up your confidence and endurance.  Also those nips I told Jeanne about will loosen you right up for the ride!!!

Speech: intermittent breast swelling, especially in this heat that is gripping the country, is probably going to continue to be an issue for us right into August.   What I am concerned about is my thermometer says I am running a low grade fever...like around 100.  I don't know if that is the heat but I do take it after I have been in the AC for an hour and it still says 100....maybe the thermometer is broken but I am going to run to my GP to get it checked tomorrow.

Laurie: I like that "I will talk if you do" deal you put out there for Jeanne!   Nice going!   It is so nice that you are having a dinner with your husband tonight and that he is going to miss you!  That is so sweet!   Meanwhile I am so glad my boyfriend does not live with me!   I was engaged twice and put the brakes on both times!  I just am not convinced it was/is for me.   I am glad, however, that you have what sounds like a true partner.  Swimming!  Have fun!  i went in my friend's pool last week but a family member of her's came over with kids and I noticed they did not get out of the pool for quite a while.....so I did!!!! 

Jeanne: don't you hate the packaging for those "key case" electronics from the box stores?!  You need a chainsaw to get them open and I can't even open my kitchen window right now!   Glad you found a body pillow.

Do any of you know how frequently a PS will do fills?  I am kind of concerned with that chemo starting and now I got to get the cat's claws clipped so she does not inadvertently do me damage and I also have to get my teeth cleaned and I think I have somet work that needs to be done on one of my rear teeth.  In addition, I have 3 fills to get done and I am hopeful I can get it all done before chemo because after chemo starts I am not even convinced I am going to want to leave the house...except to go to more chemo! 

Oh btw....I found something worse than what I think chemo is going to be....my friend came to visit with her kids today!!!!!!   They were screaming and broke a vase and running after my cat trying to kill her and then I let them go in the backyard and they near demolished my rose bush and broke my sprinkler so just as I was about to put my head in the oven, she announced they were leaving!!!!!   Oh...so soon?!....ugh!

liz- I laughed so hard at your post about the kids!  I have my two and I agree 100%!!  I have a friend who has 2 kids who sound similar to your friends children- we meet at the park- I learned my lesson the hard way too

Liz - you are hilarious!

Tips - my PS gave me a what to expect packet before my BMX with TE surgery. In there it said to take antibiotic's before dental appts as long as TE were in. Also would recommend getting teeth done before Chemo. My oncologist told me absolutely not during Chemo.

Fills can happen every week, and do for those that have to get filled before rads. I guess it is up to how much your body can handle with the skin stretch and all. Mine does every 2 weeks, first one tomorrow - yea!

On the visitors - not many people come to our house. You see we have a German Shepard - very ornery 8 1/2 year old girl who thinks the house and everything she can see from the house is hers!. Funny story with her, the day I got my head shaved, I came home with my wig on. We got in the house, she saw me and was all happy that we were back. I then pulled the wig off in front of her - that crazy dog started to growl at me like I was a stranger. I called her name, she stopped growling, took one look at me and went toward my husband. Crazy dog! Now, 12 weeks PFC, I walk around the house topless (no wig) and she could care less. I tried to measure my hair with a ruler yesterday, it is about 1 inch on top, and maybe 3/4 " on the side. I go back to work in 2 weeks, so was hoping for a little bit more. Either way, I am not wearing my wig aka hamster, anymore. Way to HOT!!! 

Jeanne - good luck today!

Second attempt at driving today. Wish me luck! Have to do it in between the major thunderstorms that keep rolling thru here. 

Jeanne!  I am so glad you are back at school!  You will develop more energy as you fall back into your schedule.  I am very, very happy for you!

On my friend with the kids, I have tons of nieces and nephews and am used to kids and I have known this friend for 15 years but when we were both in great shape, having fun with the boys.....those were some really fun times!   This latest chapter is nothing short of exhausting for me but the kids are 5 and 6!   Ugh...I just can't take it!   It is so funny to be talking with al of my old friends about our Manhattan days and our weekends at concerts at Jones Beach or hunting for Axel Rose in Los Angeles at 18 years old, on my first PARENT-FREE vacation!   Friends, naturally, come back at a time like this.  Suffice it to say, girls, I had a lot of fun!!!!!!

In any case, back to the bc misery!   I have a lot of appts including the dentist to get a check before chemo and all those other tests etc... so I might be sparse this week.  Oh yeah, and I have to get the cat's claws clipped before she inadvertently kills me after chemo starts!!!!!!!

I hope you are all feeling great, getting stronger and having some fun for yourselves!   I will post again soon.

Keep smiling girls, it works!
Liz

Jeanne-

First I want to thank you for coming to chat with us on a day when your spirits are not that high so that we can SUPPORT you because that is what we do   The same exact thing happened to me.  First, are your sure it was not DCIS rather than IDC that they found in a second location?  DCIS is quite common and the only thing that makes DCIS IDC is that it is leaking out of the ducts.  Talk to your BS and be sure there has not been a misunderstanding.   On radiation, initially I was told if it looked like it got into my chest wall then radiation was going to be necessary but otherwise it would not be.   My BS definitely told me about the chemo but then when I went to the onc, he brought up radiation.  I think it is the onc's perception of what is best that leads us to the radiation business.   Our experiences have been quite similar and I, too, was recalcitrant.  It seems like once you get bc, for most women beyond a "0" stage and certainly for anyone with affected nodes, you can expect: surgery, plastic surgery, chemo, radiation and physical therapy.  My BS defiitely mentioned, while discussing the pathology report with me, that secondary area of DCIS.

To All:

Something else I will tell you all now but did not want to share with you previously:  I had a lump, seemingly growing, on the cancer afffected "non breast!" over the past week or so.  It just kept growing and the potential for local recurrence is always evident.   I was really getting scared but as it turns out, as I found out at the PS today, it was a fluid lump from the drain that was putting out a lot of fluid and that which also had to be pulled prematurely because I broke the fall of the elderly woman.  This left excess fluid behind and I am so grateful it was JUST fluid!!!!!!!   Just so happy it was not "THAT!"   So now I am on antibiotics which pushes up the chemo date etc... by about 2 week.   Oh well...all in good time on that one.

Jeanne AGAIN!!- a reminder, too, the VNA came to see me a few days ago and I discussed my concerns with the radiation and they said it is laser-accurate now and you need not worry that the process will arbitrarily radiate your heart, lungs, ribs etc.... That was the antiquated radiation and it's SE's that we are all afraid of.  It is so refined and precise now, don't worry.  Also, recently, I spoke to 5 people, just here and there that my friends put me in touch with, and they were all radiated and they were all fine.  Almost made me consider lumpectomy....thank God I did not do that, however!!!!!!!!!!!!!!   Gadzooks!!!!!!!  I keep editing because I am forgetting to share with you one more detail:  I also was iron deficient and when I started taking that iron, I felt great!!!!!  It really does give you a boost but I don't generally eat red meat which I guess is why I am low.  Had NO idea how much iron meant to a person's every day functioning.

DON'T FORGET EVERYONE: Orchid from Santa Monica is having surgery on Thursday.  Let's all send good wishes her way

Hope everyone is well-

Liz

PS- leaving the PS office today there was 3 of us in the elevator, all his patients and we were all talking about how wonderful he is.   In any case, one of us was going bigger, one had a reduction and I am also looking forward to smaller breasts albeit bc not the way I wanted to achieve that look!!!!!  It was one entertaining conversation!!!

Had my first fill today. 60 cc's in both sides. Wasn't too bad after I got over the initial shock of the size of the plunger! Man - those suckers are huge. I also saw out of the corner of my eye the nurse using both hands to push the plunger down at the end. Got a prescription for the muscle relaxer to help with the soreness. So far so good. Will be filled every 2 weeks until I get up to 400 cc's. PS told me she normally overfills to give her some material to work with during the exchange. I also got my "Reach to Recovery" book with exercises to start doing tomorrow. Hard to believe tomorrow is 30 days post surgery! I asked about all my sore areas, and all are normal. 

Jeanne - vent away, that is what we are here for! Glad the PS helped with your swelling. My iron has been low as well, and Chemo did a number on me. Dipped to anemic level toward the end. Spinach is also good - if you like it - to help with iron levels.

Tomorrow I go in for Herceptin #10 out of 18.

Also - based on Binney's post from the other day, I stopped by my BS office and spoke with the medical asst. After some prodding, she gave me a prescription for the gloves to go with the compression sleeves I already got. Thanks Binney for posting that.