January Mastectomy

Gina....Just a quick note as an alternative for your drains....I know you've found your solution with your apron, but just in case you want to try something different.  My BS sent me home with stuff from the hospital - tape material (but you could easily use ribbon or a heavy shoe string)....tied around my neck like a necklace, hanging to a length to around my belly button (slightly above), then pinning the bulbs around the material.  Then I could put a shirt on over the drains,,,,even shower with them without having them hang heavily.  I always had a dry one and a wet one, and would interchange them. They wouldn't get heavy around my neck or anything, and it worked great.

Of course, I was glad to get rid of it once I was down to just two drains - because then the bulbs would fit into the pocket of my softee 2 cami.  But I still used the "necklace" for my showers to keep the drains out of my way.

OUCH, Sally.....just reading your post made my sides hurt.....and my holes are almost completely healed up now.....but mine got pulled on more than once (although not as badly as you described)...bless your heart!

Kat...I am really going to be keeping you in my prayers that chem can be avoided for you, and that it safely can be avoided.  I don't want anything to happen down the road that you would regret, but I can hear it in your voice how desperately you want to avoid this....I WILL be praying!!

You ladies don't know how lucky you all are to have had your moms with you during your recuperation....I wish my mom could have been here, even though she would have driven me nuts a little bit, too      Oh, no...she's still living...it's nothing like that.  My dad did die nearly 7 years ago of lymphoma, so mom is a widow, but mom had back surgery 11/30 (and yes, I was up there to take care of HER, shortly after my lumpectomy)..she lives three hours away from me.  But she had complications from her surgery;  ended up with MRSA, and was in the hospital and a rehab for a month, and is still confined to her home, undergoing PT in her house.  She has graduated from using a walker, though, and is finally able (just last week) to walk her stairs and sleep in her own bed.....anyway, she was in NO shape to be down here to be with me.  It about killed her.  But we have talked nearly every day.  (AND I have no sisters, and a brother - an OB/GYN who doesn't care and hasn't even called to check on me yet....)....

But fortunately, I have a very loving husband who has been a very good nurse, and a wonderful 17 y.o. daughter  who has done a great job, as well, and a 12 y.o. son who has done a surprisingly good job, with a great church family who jumped in with lots of meals the first couple of weeks...

sooooo, all this to say.....be grateful for your moms, ladies...and for your sisters - who came to be with you     You truly are blessed...

Everyone have a most blessed day...

blessings....robin (I DO love that word...)

Good morning January sisters! I hope each one of you had a restful and comfortable night.  I wanted to tell you all that there are great camisoles out there that are very helpful. I had purchased my own before surgery and am glad I did because I was sent home lopsided.  I went to softeeusa.com and ordered 2 of the Softee Two camisoles.  They have a pouch on the inside for the drains, which was so helpful because it kept the drains from snagging/pulling.  They also have two outside flaps that have velcro so you can mold and attach polyfilled breast forms.  Additionally, they are the kind that you step into, so you don't have to worry about lifting your arms up.  Their representatives are so helpful and they have next day shipping.  I would not have found these had I not done my own research, as the hospital I went to did not send me home with anything.  I just knew I didn't want to come home lopsided.  This was so helpful for myself and my kids, as they do not have to see the marked different in my breasts, which before surgery, I wore a 42 DDD size bra.

At this point, I still have so many questions.  After I left my initial post-op appointment, in which one drain was removed, my BS told me that there were two small traces of cancerous cells in two lymph nodes that were not visible during the SNB. My BS is the SNB specialist at the hospital I am at and he recommended not going into surgery to remove the nodes as the traces were .10 mm and 1 mm. He said, "the chemo will take care of that".  I now have an appointment with the oncologist and things seem so quiet now.  Initially, my appointment was scheduled for 2/15, but they called and rescheduled for 2/22. They really didn't say much outside of that and I am wondering if there is more information I need or if I need to continue to cope with the silence.  I come from a military family where "no news is good news".  However, I just wonder.  I was told that my diagnosis was stage III due to the size of the tumor, but again, just wondering what else I should ask, if anything.  I emailed my surgical oncologist nurse, who stated she would call me sometime this morning. In addition to this, I am trying to care for my oldest son, who just had knee surgery two days ago.  It is a lot to deal with, however, I am noticing that I am more resilient than I give myself credit for.  I am just thankful to have you all as support. 

Goodness. Soooooo much wonderful chatter in our JanJumpstarters.

Welcome to our 'new' members. You'll love us. Just a word of warning: we are addictive, but only in the best way!! We are calorie free and there's no guilt here. So let fly with your questions, concerns, wonderings and all feelings. We're here for each other.

I keep reminding myself: one step at a time.

I am not the most patient patient and I have to "honor" this recovery process, as just that, a process.

This morning I awoke with an "idea" and that is gold to me. Now it's off to work on the project, that will be perfect for keeping me busy/focused. I'm in the midst of making illustrations for my third children's picture book. I have 24 pages of 32 finished, but have been in a log-jam for months. Today there's an idea. Which signals forward progress. Which implies movement.

Cathy I marvel at you out cross country skiing. Seriously marvel. I'm sure that you're being cautious (insert nagging mother voice.)

Robin I can't wait to hear the story of the mug.

Lyn. Glad to see your smiling face.

I shouldn't start lists.

Please know that I say a prayer for each of you as I read your posts.

Ever onward. One step at a time!!

xx00xx00xx00xx00xx

Strength and courage.

Strength and courage.

Strength and courage.

I pray that each of us is given sufficient courage for the issues of today.

Just stopping by the Clubhouse to say hello!  A big welcome to all of the new members!  Everyone is moving right along, drains are coming out, or in Neversurrender's case, flying out. Now that must have been really strange. I'm clueless how your PS will handle it, but at least they're on top of it. Let us know how it goes.

I had my first chemo last week and doing well. I've had two sluggish days so far, but nothing I couldn't handle. It was a great excuse to get into the ice cream!  My oncologist told me to expect a couple more fatigue days later this week, but hopefully they'll be on par with my first two. Although I'm only one week in, chemo is something I know I can do. One down, three to go!  I'll be done right after Easter.

Kat, we seem to have a similar diagnosis, and I know you are on the fence about chemo and awaiting your OncotypeDX score.  My OncotypeDX came back an 11, so you can imagine the chaos in my brain on the chemo question.  You may want to check out the IDC message board here. There are a couple of threads about chemo and microscopic cells in one lymph node that you may find helpful.  Also, the chemo board here is marvelous -- so much knowledge and compassion! 

Have a good day, everyone!  

Cindy 

Hi, everyone, "old!" and newcomers. I totally agree, these January ladies are so addicting and the best support system around. i have a question that i hope someone can answer for me. Has anyone had an experience with "cording?" Under my snb arm I have a strange tenderness that extends down the back of my arm to my elbow. My range of motion was almost effortless until this started. Now it hurts and I can actually see something(like a tendon?) underneath my arm where the tenderness begins and from which it emanates. I started my arm exercises a couple of weeks post surgery due to my 2nd emergency surgery. i believe the ps has been very conservative with me but i was doing fantastic; Reaching above my head, nice big circles front and back. There was a little tightness but it got better every day. Now it hurts to do any type of extension with my left arm. HELP!!! and i am a pianist so this isn't good. thanks much!!! 

I am back from my PS, and I am drain free !   He thought everything looked great, and does not think I will have a problem with fluid accumulating in my tummy.  He said if I do, I can go get it drained.  I am to wear my binder 24/7 as tight as I can stand it.  I think this is to help with that also.  He released me to sleep on my side again (YEAH!!) and to lift up to 8 lbs, and I can drive - woohoo !  I feel so "normal" without my little bulb hanging from me    He also did a check on my breasts, and was very happy with them - the look and feel are ahead of schedule ! 

kat

i felt the same way about the support group, liked the anonymity of this forum, but the patient navagator at the clinic is real sweet & talked me into giving it a chance.  so glad i did.  i don't know that they have 'freebies' very often, but having local gals clue me into local resources was nice.  i get my ct results on mon--staging can only get worse, as i am pushing IIIb.  i understand your point about the oncotype being on either end of the spectrum--makes decisions so much easier.  kind of like in my case there was no choice.

sally-- thinking you should ask/have them do a culture on the puss. i was up part of the night amping out about you.

went to pt this morning-she also does the lymphedema pt.  very helpful & i think i can comply with the exception of the hot tub.....may be a cheater there.  admit that would change if there was any sign of lymphedema.  she also told me about massaging the surgical site with either vit e, or vit e & cocoa butter.  we talked a lot about trying to minimize scarring....

it's after noon here & i still haven't had  a meltdown-----tata ladies--

cleo--from what my onc explained to me, that pulling feeling in your arm is a nerve than runs through  the arm, & onto the breast area & the surgery & expecial node dissection irritate it--but it gets better & he put me on neurontin in the meantime which has helped.  at first it was the worst under the arm, feeling like the worst sunburn imaginable, but then the pulling started--maybe when i started moving more.  second thing, i got the same info from my ps about the silicone--he told me how much better they are & feel so much more natural--but i have to wait until next year to get mine--  

Good Afternoon Ladies. Welcome to the newcomers. You will find that you will get great information and wonderful support from these women. Today I am not feeling as great as the other days. Didn;t sleep to well and my TE are hurting in my right breast.  I think I am doing to much, Can they move? I don't know...... I'll just take more Tylenol. On another 5 days of antibiotics for the stomach boil issue and I'm down to 35-40 cc in both drains for a 24 hour period.

Kat- know how you feel about the oncotype test......It would be easier if the decision is made for you.

You girls with Mothers- You are very lucky. Savor the help and the love that comes only from a mother. Both my parents a deceased and my in law live 8 minuets away from me are as helpless to me as my parents! Thank goodness for my husband and friends.

Sally good for you and the drain... listen to the dr's.

Cindy hurray for you on your first treatment.... Keep feeling good.. You are almost there.

We are almost there girls. One day at a time.

Courage and strength,

Donna

Welcome newcomers and it is good to be back after checking out a bit myself.  Apparently there are two types of pain post surgery (had bilateral mastectomy, 21 lymph nodes removed, 2 cancerous).

1) Surgical pain--this part was pretty easy, even the drains

2) Nerve pain--this started after the drains came out and was the worst. Lightening bolts started through the chest and sleep stopped for 5 days, and uncontrolled pain.  This was accompanied by some panic episodes and a week of deep depression.  The earth stopped. But I'm back and into the fight again.

The port goes in Monday and chemo starts Wednesday--16 weeks of double dense chemo, followed by a one month vacation, followed by 6 weeks of daily radiation.  The final analysis showed by tumor was 5.1 cm, upping the stage to 3.  Listening to the oncologist was a real downer, but we have the battle plan for the fight and are ready for action.  

To you side sleepers, I agree the back sleeping is bad and makes illusive sleep even more so. Pillows seem to help more than any of the drugs so far.  That and prayer--our "January bunch" is blanketed every night, and a double or triple dose happens when sleep does not.

Thank you all for your kind and generous support--it is good to read in on you all and to hear where everyone is.  Progress comes one day at a time... Strength and courage all!

Aloha & Smiles! 

I made it back from my outing to the band concert.  It really wasn't to bad.  I waited and went in at the last minute, so I kind of chickened out on the "pre concert" social part.  Afterwards, I had to wait for my daughter, but she was (for once) very quick and we left, so I kind of missed the after social part too.  So, I made the trip, but didn't really put myself 'out there'.  Maybe next time.  I really don't have much pain, but sitting in those tiny little auditorium chairs tonight really got to me.  I had to take some tylenol.  Hopefully, it will help and I will not have any trouble sleeping.

Lyn:  How many fills have you had?  And how many cc's are you up to now with this last one?  Am glad to hear that you don't have LE...  Sorry about the pain, but 120 cc's is a lot.  I had a 150 and that was painful.  I am still kind of just tight and uncomfortable all the time but have read that doing the stretches are helpful to relieve that I have noticed that it does lessen it quite a bit.  Here is a list of excercises/stretches that someone on a different thread gave me that she had gotten from her PT.  I like that you can pretty much do them anywhere or anytime.  Hope it helps with your uncomfortableness...

1. Arm stretch: sit facing side of table. arm on table. slide arm forward palm down until you feel stretch in front of chest. Holde 30 seconds repeat 3x.

2. Tricep dip using table. Face away from table hold edge with both hands. Lower your body until you feel a stretch on the chest. Hold 30 sec. Repeat 2 to 3 times.

3. Shoulder blades down. Women tend to roll their shoulders forward. Sit tall like gramma told you and push out the girls which brings your shoulder blades in. Do 10 times 3x a day.

4. T stretch: Lie on the floor or bed and put arms out to make a T. hold 30 sec 3x. When this gets easy lie on edge of bed and hang extended arm off of bed and let gravity do its magic. Repeat on other side 3x for 30 sec. If you have an exersice ball you can do both arms at once.

5. Wall crawl. Stand in front of wall and walk hands up the wall until you feel a stretch. hold and repeat

6. Doorway stretch: Place hands on door fram and walk them up until you feel a stretch. Lean in to intensify the stretch. Hold 30 sec. repeat 3 times

7. Triceps Stretch: Pull arm across body and use other hand to pull elbow slower to body. Hole 30 sec, repeat 2 to 3 times

8. Rotation stretches. Place arm in door frame making an L with your arm. Elbow close to body. Turn away from arm until feel stretch in shoulder. Hold and repeat.

9 If you have had LD. Side stretch. stand with arms at your side. Stretch to one side so your fingertips get closer to your knees. Then angle your upper body forward 45 degrees until you feel a stretch on your side. Repeat 3 x. Do both sides as it is imprtant to stretch your body equally.

Morning sisters!

I want you all to know that you inspired me to make a better decision about my healthcare.  I decided to go ahead and see my medical oncologist today instead of waiting until 2/22/ which is the day I find out about my internship.  A woman can only do and handle so much in one day.  I am feeling good and encouraged by each of you.  Thank you so much.  I will check back in later to let you know how things went.  Oh, I meant to say that I spoke with my BS's nurse practitioner and she revealed that only one of my nodes are considered positive, since the other is submicroscopic. I am thinking I should have had a bilateral mastectomy instead of just the right.  Maybe I can do that later in the treatment course.  Any suggestions?  With love, strength, and courage.

TiffanyGanell

 I totally agree with Kat about the Bilat...  to me it was both or none.  Just to know that I don't ever have to go through this again is wonderful for me. 

Maura, I'm glad that you second fill was good.... that gives me hope.  I am not in such a hurry that I will allow such a huge fill again.  That was too much, I got through it, but it's not necessary.  No more than 100 cc's for me!  I don't go back until the 22nd for my next fill.  I am attempting to go away for the weekend leaving today.  It's my annual bowling tournament weekend with the girls.  Obviously I won't be bowling, but didn't want to miss out on the other fun, and hoping that just getting away will be a distraction and fun.  We'll see how I do in the hotel bed.  It's only an hour away if I can't stick it out for the whole weekend, my DH will come and pick me up.  Want to call the PS today to see if I'm still retricted from pools and hot tubs...  we'll see, I'll let you know how it goes!

Blessings and prayers to all!

Paula

I was really wanting Bil just for peace of mind. But My Rt Breast Mastectomy was already schelude for jan 29th & I inform my BS Jan 20 I had decide to do bil. she agreeded. But then the office called me back & said  that BS & PS could not do bil On jan 29th,due to Ps had another surgery 1 hr later after mine. at another hospital.The soon as they could do Bil was feb 19th & I just cried & prayed & emotionally I  knew I could  NOT wait. I went on as schelude & Just had rt with immediate TE. I am so releived to have the surgery behind,but I am still scared it will come back in Left breast now.I did see my Oncologist for 1st time yesterday, she ws very caring & support & made me feel better about my decision.Shwill watch he left breast carefully & She gave me Rx for tamoxifenfor 5 years. My Husband just pick it up. Iam now just starting at the bag , wondering if I want to take it,due to side effects. Could any one who on tamoxifen let me know how you are doing.

 My Drains are still in,due to one is still 60cc , so they cancel today appt & reschelude fro Mon Feb 15th. Hope to get them under 25 cc & get them out Monday, so I can get my 1st filler.

 Thnaks for letting me vent!

Hugs Gina