Topic: 2012 sisters

Jul 16, 2012 02:35 PM ramols wrote:

Busy busy as usual here. Have had lots of family around and since I'm not working - not spending as much time on the computer, so haven't been able to keep up. Recovery is going well. Each day I feel a bit better and can push a bit further on my exercises. Minor drain scare thim morning when one was bleeding a bit externally. But went to my dr and they said all was fine and took them out. So happy to have them out! To those of you who have had chemo and are nervous about surgery - I promise you, you can handle this. When I have some more time I will write a bit more about my experience and maybe it will help ease your anxiety. But it is totally doable. Chin up ladies. Hugs to all. Hope you're feeling as good as you can!

Jul 16, 2012 07:19 PM, edited Jul 16, 2012 08:32 PM by websister

Hi everybody.
Lots happening!
Aruba and Jennbell - welcome. Aruba - my diagnosis and surgery were about the same as yours apart - I was given diagnosis on June 20th and surgery was on June 29th with scans and preop appt in between. It is only just recently all sinking in.
Lisa2012 - understand the meltdown, I never noticed others hair and boobs so much in the past, what we take for granted, eh? I also find I am noticing old people and wondering if they appreciate that fact that they are the age they are
Tazzy - I hope you did call your nurse navigator, waiting sucks big time
To all the moms who are/have felt like they are failures due to this - hugs
jpmomof3 - good for you for showing off your new hair, glad you a feeling better about everything today and congratulations on getting to one last shift before surgery Probably missing a few of you, I did read and appreciate all the posts.

I designated people from different areas of my life to 'tell' for me, we told our immediate family. I felt it would get out anyway but didn't want to be the one telling everyone. This seemed to work well. I also created a blog for my designates to refer people to for updates and this also seems to have worked well, people know how things are going but aren't calling or emailing all the time although I have received some lovely emails.
Surgery - lymph gland removal is the most painful part for me but I found out today that I had 27 removed, so that may make a very decided difference from just one or two.
My weekend away was wonderful, definitely needed and appreciated.
Called my surgeon's office this a.m. Re: results - they were in so she sent to my GP (surgeon on vacation) - Results are actually better than I had anticipated. I wasn't quite sure how to update on my signature so if you can help, I'd appreciate it. The IDC was 1.5 cm, clear margins for 2 cm., DCIS was 7 cm. with clear margins for 0.5 cm, 2 of the 27 lymph nodes we positive for macrometastatic adenocarcinoma and I added the hormone receptor status, positive for estrogen and progesterone, the HER2 was 30% so wasn't
sure how to indicate that. Ended up as Stage 2A.
We had a vacation planned for week of August 6th so I am trying to push for all appointments to be either before or after that week, I'm hoping this can be accomplished.
Know this is long, my apologies :)

Jul 16, 2012 10:12 PM jpmomof3 wrote:

Websister, I am glad things came out so well for you, yay clear margins! Two of 27 nodes isn't bad either. While no one wants a positive nodes you know with that high number of nodes they most have gotten all the important stuff. Do you know yet if and what chemo and radiation you are getting?

I know what mean about looking looking at old people. I sometimes get a little bitter and wonder if I will ever have a chance to make it to that age. But then I also have to check myself and realize that I have no idea what they have been through to get there. I work in a medical clinic and I sometimes get irritated at some of these elderly people whining about knee pain when there are way worse things that could be going on and they should be thankful they made it to 80 and saw their kids graduate from high school and met their grandchildren and even great grandchildren. But then I have the opportunity to review their chart and see that a lot of them HAVE been through a lot. There are quite a few that are breast cancer survivors too... I want to be them. They are an inspiration. A lot of them see my headscarf and notice my breast cancer pin and they are often very kind and will tell me their stories. Let's hope that we can all be in their shoes and be 80 and be more worried about shoulder pain than anything else.

Time for bed. 6 more days til surgery! Six more days until my port and my cancer get the hell out of my body.

Jul 16, 2012 11:05 PM Cindyl wrote:

Generally for the SNB they will inject a dye into your breast then they watch the dye to see which node is first in line. That's the node they take.  Sometimes several nodes light up at almost the same time, they will take all of them.  They then check for cancer in those "sentinel" nodes.  If they find nothing, they are done. If they find cancer they will usually continue removing nods.  They also sometimes remove nodes that are in the way of the tumor. 

Jul 17, 2012 07:29 AM Aruba wrote:

Thanks for the info Cindy and Websister!  Just going to keep praying for clear margins and no lymph node involvement.  Do they cover the underarm in gauze etc?  No clue why I am more worried about the underarm area than the lumpectomy incision.  You all are so great!  JP-sounds like your are handling this great one step at a time, with the worst behind you!  Till later...

Jul 17, 2012 11:03 AM jpmomof3 wrote:

Aruba, Each surgeon is a little different in their practice.  If you have negative sentinel nodes they will likely only take a couple of nodes.  If they are positive it depends on the surgeon to a large extent.  If the nodes look abnormal, they will take them out.  The trend these days is to take fewer out.  the studies are still coming in but they are showing that you dont need to have a huge number taken out.  Even if some are left behind that have residual cancer they will be taken care of by chemo and radiation.  But if your sentinel nodes are negative you dont have to worry about that.  You may not even need chemo or radiation if that is the case. 

Good luck with your surgery! 

I went topless yesterday for the playdate with my son.  My friend and one neighbor that saw me never batted an eye.  It was more me worrying and being self conscious.  It was nothing.  plus it was cool that way!

I updated my avatar with this weeks photo.

6 days and counting for my surgery.

I have updated my

Jul 17, 2012 12:30 PM, edited Jul 17, 2012 12:31 PM by websister

Good morning, everyone

Ramols - wishing you a continued uneventful recovery, look forward to reading your experience

Jpmomof3 - counting down with you, avatar looks great, I am having a lot of sensitivity over incision area and bra/clothes make it feel like I have a bad sunburn. At first when you said you went topless I envisioned how wonderful that would be in a 'no shirt' kind of way. I think that would probably get more reaction, though ;)

Tazzy - hope the retail therapy is effective and that you hear something back re: date very soon. I used slightly larger sleeveless tank style t-shirts with larger neck openings, put your affected arm in first and then pull over head and other arm. Wore this under button front pj's or other tops.
There is a pulling sensation in the arm where the lymph nodes are removed but I was still able to life my arm higher than I had anticipated, even better once drains we're removed. Tighter tops without button fronts are still difficult though.
I had company the night before surgery and while it wouldn't have been my choice it actually did make the time go faster. The next morning I made sure that I played my favorite music softly in the background as I got ready. At the hospital also brought my music and used it after they had me ready for OR. Hardest part was when they took me to the OR and I waited in there, but this was also the least amount of time and everyone there was very kind.

My mother has been admitted to hospital so I am going to go get her some of her things
so she is more comfortable.

Take care, everyone

Jul 17, 2012 05:35 PM 2FriedEggs wrote:

Hey everyone wow surgery is getting closer! You will be so happy when it is over with!  wow! My prayers for a speedy recovery to those having surgery in the next week or so and a great continued recovery to Ramols and anyone else in recovery mode!

Tazzy I never wore safety pins- I'm such a clutz and I was always afraid i would poke the line or something, plus I wanted easy access to the drains. I just got a stretchy knit tank top cut off under the armpits/preferably a tube top- that I could just step into, pull onto my belly then set the drains on it and fold it up from the bottom. The stretchiness held them in place. Then I bought a couple of cheap,supper sized  button up shirts  and then tied them in a know at the bottom. It was very comfy that way. Then when I needed to drain them I could just unbutton and pull the drain out drain and stick it back under the stretchy stuff-no pins or belts etc to mess with and I could tuck them where ever I wanted. I was not aloud to shower until the drains were out so I basically became a bag lady and made a plastic shirt out of a contractor bag-put a little tape around the neck so I wouldnt let any water in. Good thing I did because 2 of my drains lasted a little over 3 weeks. The big button up shirts worked for me and if I were going to not wear just the cut off shirt thing  and wanted to pin the drains to something  I would probably go with the sleeveless tank shirt as websister said she did and cover up with a "big" girl shirt. I just didnt want to have to always be taking stuff off to get to the drains thats why I found my pinless method using the "stretchy waist band" lol . Even though I had had my nodes out 2 months earlier I still had some tenderness there plus it was tough the 1st week or so to get anything over my head. After that it wasn't too bad. Sounds like your hubby is alot like mine. My husband had done like a little spreadsheet thing with times and 4 drains and he would come help me empy them then go input the amounts in the program so it would add them up after the last one for the day then print me out a copy to take to the doctors for my appointments lol. My doctor said wow you are detailed. Thats really nice lol. I fessed up that he did it though. Oh even though the drain bulbs have cc markings on them to measure your output, when you start getting close to the end it was hard to tell how many cc's was really in there. So I found it easier to dump the drainage into one of those little cups that come with liquid medicines. They have tablespoons on one side and ML on the other. Well one ml equals one cc so it took the guesswork out of trying to figure the smaller amounts in the drain bulbs.

Websister Glad your results were better than you expected. Funny but by the time I got into the OR I was feeling better than I had all morning. They had given me all kinds of feel good meds. Since I had 3 different surgeons, an ob-gyn, breast Surgeon and plastic surgeon in the OR plus all their nurses and anesthesiologists it was quite crowded and everyone was really nice. I felt like I was talking with a group of friends and the next thing I know I woke up in recovery and realized I had missed the party! Somewhere in there they had slipped me the big drugs to knock me out but I sure don't  remember it happening. Anyway hope your mom is ok. It's tough having ill parents at the same time as all this. We have had alot of illness in the family and I didn't tell my family/friends about my own situation so as not to add to everyones worry so it has been real tough juggling schedules and emotions.

jpmomof3 looks like your hair is really coming in nicely. Here in FL short short hair cuts are popular. Funny how this disease brings out different meanings to "old" terms like your " going topless" and like my "stripping" when I stripped my drains. Lol

Luvmygoats Thats the truth about that orange stuff wow. I ended up sticking a roll of paper towels in the bathroom that I would use both to wash certain areas and dry. Since I had skin issues to begin with after my nsdmx, I still use the paper towels to tap dry the bad skin areas. My ps still has me using tne liquid disinfectant soap for now.

Wow my fried eggs by now I swear are the size of those ostrich eggs now. Taz maybe since you are so good with those comparison charts you can compare the ostrich egg to elephant testicles for me to see which is bigger. Which ever it is, with these overfills the ps does, I have them! I don't think I can have my exchange though until September but I'm telling you if they called with an opening in the middle of the night I would be there-I am sooooo anxious to get it done. Sleeping with these boulders is really difficult.

Aruba That's good though that you get to have the lumpectomy and get it done with. Waiting for all this stuff is the worst. I had my lumpectomy back in Jan but they didnt know I had IDC at the time so they didnt take nodes. At 1st I was going to stick with the lumpectomy since my margins were good on the IDC side so I went in the next month for the sentinel node biopsy. My doctor was only going to take one but I guess when they put that dye in it went to 6 nodes, so she took out all six. As it turns out they were all negative.

Well thinking of you all!

Jul 17, 2012 07:38 PM jpmomof3 wrote:

jTazzy, Yummm I love Vietnamese- I would go to a restaurant for Pho before a lot of my chemo sessions.  Glad the retail therapy worked!

Teeball, that was a stupid and incorrect term to use. Hope you feel better about it soon.  We are beating this cancer! no remission about it, its defeated!

Websister- yeah, my DH heard me use the term topless- he was all excited until he figured out what I was talking about...

Websister, hope your mom is doing ok.  Its tough when you have yourself and others to worry about.

I am just finishing my last shift before i am off for three weeks.  I have 5 days to enjoy before surgery.  Time for an ice cold corona.

Jul 17, 2012 09:35 PM Tazzy wrote:

Believe me 2Fried... you do not want pictures posted - lol !

jpmom: enjoy your time off, make sure you do things you enjoy.

Hope everyone is enjoying an evening with lots of love, smiles and hugs xx

Jul 18, 2012 10:30 AM websister wrote:

Quick check-in
Thank you to all re: my mother
She is 88 and has lived through a lot, including the depression. I am her main support. My father died of colon cancer when I was 14 and we lost my sister to cancer when I was 23; we also lost my younger brother to suicide, he was 19 when that happened. When she found out I had breast cancer I think she started worrying about her own future, especially if I wasn't around and this has caused her to deteriorate physically. She tells me she just feels like giving up. Hard but we are working with her and the doctors to get her back to a healthier place.

Tazzy - glad the retail therapy and lunch with your husband worked. Expecting to see you post your date soon.

Jpmomof3 - countdown continues, thinking of you

Ramols - hope you get that shampoo in, it feels so good to have clean hair

2friedeggs - I am really glad Tazzy couldn't find pictures to post

teeball - hope you are feeling better again today, people have no idea the power of the words they use

Take care all :)

Jul 18, 2012 11:28 AM bevg49 wrote:

as far as drain management, I made a couple of the best purchases. I bought these camisoles off the internet. One of them has velcro opening for ease at doctor's appt. There are inside pockets for up to 4 drains and pockets for soft breast inserts which I'm not ready for yet anyway.The other camisole can be put on feet first and goes back into shape. It also has pockets for the drains. I wear them whenever I go out covered with a button down blouse (I had to buy several because I didn't even own one button down shirt or PJ....I still have TWO DRAINS. Tomorrow will be 6 weeks. I am getting one out on Friday, thank goodness, but the second is still putting out 60 or so a day so I don't know. It really really really sucks but the pocket camis sure came in handy.

Jul 18, 2012 12:39 PM 2FriedEggs wrote:

bevg49 I had one of the velcro opening ones , mine was from tlc, that had a spot for foobs too lol. Unfortunately though  mine only held 2 drains and I had 4 and the bra was so big that I came home in that it really pulled on my velcro and the velcro would come open and  stick to the big bra thing. Sometimes I was a big velcro'd mess .lol Once I got rid 2 of my 4 drains, it was real nice for doctors visits though. Once I got rid of the big bra though I just went and bought a couple genie bras in jumbo sizes. They have a compartment you can "stuff" too which is nice. I used the forms from my camisole in it plus some batting. Once I started getting fills I started taking out a little of the batting so that I stayed the same size. I am still using the genie bras but had my overfills and have nothing else I can take out lol. I only had the drains then for a couple weeks so I just tucked mine in a stretchy cloth that I put around my belly and they worked great. The big shirts are key though aren't they? I went to a couple discount stores two days after surgery and bought some cheap ones in the bigger womens sizes because I had no idea how bulky the drains and big bra were going to be. Those having surgery may want to ask their doctors what they will be going home with because some have been sent home with camis, some big surgical bras, etc etc. Some of this stuff can get pretty expensive although some places like Nordstroms will take your insurance for the mastectomy camis and bras (with a prescription) if your insurance will cover it. The Nordstroms lady knew exactly which ones would cover them too atleast ours did. So that's worth a try too.

JPmomof3 that is something and you are so right.

Websister  I am glad Tazzy couldnt find pictures as well but I know she likes a challenge so I thought I'd give her one.lol  I hope you can cheer your mom up. I lost my mom when I was 15. My dad is almost 90 and I'm it to help him, so I know how tough it is especially in our situations. I didn't even tell him about my situation for a number of reasons including his age and I didn't want him to worry. I hope I never have to tell him.  Aruba it must be really hard being so far away from your Dad in this situation.     

Jul 18, 2012 03:33 PM 2FriedEggs wrote:

Jul 18, 2012 09:33 PM Aruba wrote:

Thinking of you LostInMO!!