June 2012 Mastectomy

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  • loriio
    loriio Member Posts: 247
    edited July 2012

    Caution: severe venting ahead



    I have hit the boiling point! I am in a rotten mood. I am sick of being constantly uncomfortable/in pain. I want my old life back. I meet with the MO on Monday and I'm really scared what he will say. My husband had a really bad day at work and he wants to talk about it but I really want to climb into bed, pull my covers over my head and spend the entire weekend there.



    Ok. I feel better now.

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  • luckykitkat09
    luckykitkat09 Member Posts: 190
    edited July 2012

    @loriio

    -hugs- I'm sorry you're still in pain. I'm still getting used to this numbness under and back of my armpits (if that made sense). I'm sick of being at home all the time and ithust plain sucks!

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  • me_4givn
    me_4givn Member Posts: 43
    edited July 2012

    Hello taismommy,

    Huge Huge HUG!! I am so sorry you are having the horrible feels of being all over the place. Been there done that (still happens sometimes). One minute it's ok the next I have tears too. I can't stand crying! You feel what ever it is your feeling. This cancer stuff is truly YUCKY!! I am so happy for the good report on your non-cancer side (whoopie!!). I took chemo first because I was in a clinical trial. My surgery came last. They give you medication that helps if you need it (just ask your onc nurse to get an order from the doc). Don't be shy in asking for help. This stuff is stressful! I agree with faithhopenluv once chemo gets going it's not to terrible. I thought I would want to sleep through it all (you can if you want...ask for the meds). I found after the first couple of times, it wasn't to bad for me so I would read and listen to music (iphone/itunes), and bring a friend to visit. My best days were with friends at my side laughing about past events and planning on future events. Also, it helps big time to have a buddy that has already gone through it. I was able to communicate with two friends that had BC and we all have the same types of feelings. Some of the common feelings we had were hope, frustration, fear, determination, depression, and joy. Look at the PT as one more way to kick cancer in the toosh! Be patient with yourself and go at your own pace. You know your body.

    I wish for you the very best!!

    Jami <><

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  • me_4givn
    me_4givn Member Posts: 43
    edited July 2012

    Hello Girls........

    I want to send out (((HUGS))) to you all. This has been a tough week for many of you and I am so sorry!

    loriio- I had a vision in my head when I read your post. A man and a woman in bed with the covers over both of their heads both laughing with tears rolling down their eyes because they were so sad but in it together. Sometimes just being close together helps both sides :)

    kathyhong- Can you have a friend/family take you out? I was taken out to lunch by my mom and it was wonderful!! Also, my husband and I went for a walk outside the other day and it was super great. Cabin fever is NOT fun. Happy outings :)

    Praying for you all!!

     I am still leaking slightly on the right side where my drain was pulled. The left side seems to have stopped. The drainage is yellow, no odor, and dressings changed twice daily. The other two drain sites have scabbed over.

    Jami <><

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  • luckykitkat09
    luckykitkat09 Member Posts: 190
    edited July 2012

    @me_4givn

    You still have you're drains?? How long ago was your surgery? I didn't need chemo nor radiation so I cant relate to that but my mom has had both chemo and radiation so I know how horrible it is for all the other ladies.



    Sadly no..friends are all busy. Parents are retired, I rely on dad to drive me until my PS says I'm ok too. Mom doesn't drive. Cabin fever sucks :( I'm able to walk and can lift my arms but not straight up. But having nothing to do but tv and an online math class (I'm 21 and a fulltime college student). Its boring.

    Just last night I almost gave myself a meltdown. I still need some venting. Its ridiculous!

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  • NanG
    NanG Member Posts: 180
    edited July 2012

    i'll def. be praying for 25. 

    taismom. i just wanna hug you!!!! *HUG* 

    i don't have any comforting words for my girls here going forward to enter chemo. im greatful for your cheers and our celebrating my pathology...and I PRAISE GOD for saving me....but at the same time friends...my heart is just longing for you girls. I just wanna cry...because i seriously love u all!!!

    i had dinner with a lady tonight who was a serious inspiration to me.  i've known her for a few years through church things, she did some teachings in a course i was taking and she was always really awesome to listen to. she actually reminds me of me. lol (sorry if that sounded narcissistic!) but really, i always thought that when i would listen to her talk it was like watching a video of myself when i'm 50!...but anyways.  last year we were told she had breast cancer. it was agressive, tonight she told me it was triple negative but it was somehow really agressive.  anyways she was Stage 3, and she had to go through two surgeries, chemo, radiation AND in the midst of all this she had to move away because she started her treatments in Hawai'i where she lived at the time...but then her onc  moved away and they didn't have rads on the island she was on so she moved to Washington to do rads. 

    ANYWAYS....loooong story...but why im sharing this is that tonight at dinner she was telling me how throughout chemo, she met amazing people in the clinics.  She also shared how hard chemo was on her physically in that she was really tired and drained...BUT...she was still able to walk through it and do things that were pleasurable, in her case she wrote a bible study.  The reason I wanted to share this info is that, to me...when I was looking at the possiblity of chemo I was scared that my life would end. But talking to her I realized that it really just slows down.  Yes, it is hard.  BUT...you will keep going forward.  And you will get through it. You know I prayed for us all.  I prayed down and dirty with the Lord one day and asked Him for a miracle that all the Junebugs would live.  And i believe in God and believe that He will honour that!  So, my bugs...im still asking for you...and im believing for you for mercy in your treatments, for healing from complications and for an amazing story to tell when its all over. 

    I love u girls so much......<3

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  • me_4givn
    me_4givn Member Posts: 43
    edited July 2012

    Hello dear kathyhong,

    No, my drains are out but I am leaking on the right side at the site the drain was in. No signs of infection, just leaking :( My Surgery was on 6/25. Is there a Gilda's Club by you? Check it out on the net. They are great and provide lots of information and resources. They may be able to put you in touch with someone near you for support and interaction. Also, you might want to start a thread for 20-something gals going through the same for more support and common issues. We are all here for you if you do melt down ((hug))! Vent and vent some more until you feel better. This stuff is really no fun! Can you go for a walk? It may help burn off some of the stress. Just a thought. Best of wishes with school! Good distraction :)

    Big hug to you!!

    Jami <><

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  • NanG
    NanG Member Posts: 180
    edited July 2012

    kathy, im three weeks out and im driving. nobody ever told me i couldnt drive. but logically i just started to drive when turning the wheel didn't hurt anymore. i have a big gmc envoy xl to drive so its still a little hard to turn but i just take the small car when i need to go out.

    school is probably a really good focus point going through this.  ive been watching old black n white movies when im bored.  and a LOT of series.  like, in the beginning I focused on Game of Thrones. then I went through the Fresh Prince of BelAir...which im still working on. im up to season 4~...but i KNOW WHAT U MEAN about boredom! 

    usually i bead.  i LOVE to bead....i am a pow wow dancer, so i have a lot of beadwork that i was working on pre-diagnosis to finish for pow wow season this summer.  but after my dx i just gave up on it. i didn't have the mojo in my heart to go forward with it.  NOW...*ugh*  after my snb i realized that i can't bead without a dang thimble and I HATE thimbles.  so im either gonna have to put up with one, OR teach myself how to be left handed!! lol.

    Im 33.  I think going through BC at my age is life changing, i can't imagine myself at 21 walking this out.  Were you brca pos?  was yours a Pmx?  or did u get a dx?

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  • me_4givn
    me_4givn Member Posts: 43
    edited July 2012

    NanG,

    Much love back to you!! I am a believer too and I am praying with you for the same.....healing!

    Gosh, I am so happy to be apart of this great support :)

    ox Jami<><

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  • bevg49
    bevg49 Member Posts: 739
    edited July 2012

    Oh brother, the drains still leak even after they come out? I can't even imagine. I got the drains in on June 7. One is putting out between 25-30 a day so might be out within a week or so. The other is still putting out 80 or so a day so I can only guess when that one is coming out. I have had one complication after another. I don't want to sound like a chronic complainer but these drains are just red and raw on day 36 and then to think, even after they come out, it isn't over? 

    I also have a question that someone might know the answer to. I was very lucky (and therefore feel kind of guilty when I vent and whine). My pathology report was great. Sentinel node clean. No evidence of the invasive cancer which doc said must have come out in the biopsy. No more dcis..... So no cancer technically. However BS referred me to a MO. She said she didn't think I would need chemo but it was up to the MO. Why would I need chemo?? She said I would most likely be taking tamoxifin. I think I know the reason for that - in case of any stray cancer cells..... Right?  I am just slightly confused. I thought a good path report meant done but I guess not quite.

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  • curveball
    curveball Member Posts: 3,040
    edited July 2012

    @taismommy, I am not going to say "don't feel that way" (as if you are doing it on purpose), but I will ask if you have taken any steps to get help overcoming those feelings, like joining a support group, or seeing a counselor through your hospital or local cancer organizations, or talking to a religious mentor or.... you get the idea. There are ways to resist depression and I hope help in that area is easily accessible to you. I've been going to a support group and though I'm not usually a "joiner" I'm so glad I decided to go check it out. The people there have been just great and some of them said my thoughts and contributions helped them out, which I never would have expected. If a group isn't your cup of tea, then maybe talking to somebody one-on-one, or journaling or something else will be just the thing. 

    I am starting chemo next week and I'm scared too. Wanna be scared together? C'mon over and join the July chemo thread too.

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  • curveball
    curveball Member Posts: 3,040
    edited July 2012

    @bevg49, my guess is the surgeon referred you to an MO for further discussion about hormone treatment and whether chemo is advisable for you. The MO may suggest (or you may want to request) using the Oncotype test to clarify whether chemo is likely to be beneficial or if  hormone tx is sufficient, and if so which hormone medication is best for you. I notice you are ER & PR positive so I assume you will be on hormone treatment but your diagnosis doesn't include your Her2 status. If you are also Her2+, then targeted therapy (e.g. Herceptin) might also be included in your treatment plan. I expect all of that is what you will be going over with the MO. The purpose of all that is to maximize the probability that now you're officially cancer-free, you stay cancer-free.

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  • JenH13
    JenH13 Member Posts: 183
    edited July 2012

    Huge hugs to everyone! It sucks but you CAN do it!,



    Chemo isn't fun. But it is very doable. Each persons experience is different but it wasn't nearly as horrid as I led it to be in my mind. My infusion nurses were just amazing and I love those ladies. I knew when I would be tired and need a day in bed but I still worked full time the whole time and still participated in all my kids (ages 9 and 6)activities.( soccer games/practices, competitive gymnastics, karate, school programs etc.) it's nice to tick off each treatment as its done as one day closer to the end. It went by fast. I am triple positive, so I did have the herceptin, and still getting it until next jan. I also have to do hormone therapy, tamoxifen even though my drs. Have both said i am now cancer free. But I rather do it in order to not have to go through all this again. Feel free to ask me a question anytime! I'll be praying for you all but I know you are all so strong you will get through with flying colors!

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  • bevg49
    bevg49 Member Posts: 739
    edited July 2012

    Thanks so much for your answer curveball.... I guess I knew it wasn't really over but hoped anyway. I hate all these bc decisions we have to make. I liked the old days where docs ruled - said take this medicine and you'll get better and you didn't question and you did. I had appendicitis... No one said make a choice on having it come out of having medicine targeted at it. I had pnemonia. Got antibiotics in the hsopital and some oxygen - got better. No questions asked of me. Where is Marcus Welby, MD when you need him???? THe take charge kind of doc. (Just aged myself terribly. Some of you will scratch your head and say Marcus Welby????? What hospital is he affiliated with? LOL..... I'll age myself some more.... I want Ben Casey or Dr. Kildaire lol....In answer to your question I am HER neg. so I guess the chemo isn't for me. But the tamoxifin is a defimite from what I'm told.... Anything to keep this stupid cancer from coming back. Just PLEASE let them take the drains out. Thursday will be six weeks - too long....

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  • my3sunz42
    my3sunz42 Member Posts: 148
    edited July 2012

    Bevg - When my drains were continuing to put out, my PS filled my foobs (I'm a rather small gal - was formerly an A-cup). Anyway, within 24 hours of the fill, my output dropped dramatically and resulted in drain removal. Just a thought ... 

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  • me_4givn
    me_4givn Member Posts: 43
    edited July 2012

    Hello Ladies,

    bevg49-My drains were leaking after they were pulled out. Day one put pull, my right side was soaked and the left side was not soaked through. Day two, changed dressing x2. Same with day three. Day four, no leaking on the left and very little leaking on right. This morning, woke up with dry dressings!!! Maybe the draining is over??

    Please let me tell you my experience. In comparing having the drains to having leaking from the drain sites, I pick changing dressing every time :) I was so much more comfortable after all the drains were out. Hang in there, it will happen :) The same fluid that was in the drains was on the dressings clear yellowish. All my drain sites (4) look good with no signs of infection. I believe things are on the way up.

    curveball- excellent advice for support :) I agree, it really helps to have some outlet. Many prayers for those of you going into chemo days. Just keep reminding yourselves, it's not forever. I had a countdown going on and I remember reaching the halfway point. My family and I had a celebration. It helps to have little things to look forward to to encourage you.

    JenH- Wonderful encouragement :)

    Good morning and Hugs to you all!

    Jami<><

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  • GeorgiaRai
    GeorgiaRai Member Posts: 175
    edited July 2012

    To anyone else heading to RADS:  are you doing physical therapy?  Does it come before, during or after radiation?

    My PS says no exercise for 2 more weeks; BS has already sent me a prescription for PT; RO will start rads in mid-August.  I'm just not sure how all of these should fall on the timeline.

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  • luckykitkat09
    luckykitkat09 Member Posts: 190
    edited July 2012

    @me_4givn

    I don't think there is a Gilda's club near me. I'll definitly look it up. :) Yeah the leaking should stop after a day or so unless they took the drains out early what did he PS say about it? Mines have scabbed over and they have started to fall on its own. I had 4 drains and had them 2 weeks. First two removed after a week and he last two removed a week later. One of them leaked for about a few hrs and was still dark red but it stopped. Venting. Ifunny I was typing up my venting rent and then he next day I read it it sounded so vain and I mentally kicked myself. Haha! Ive been walking around he house and playing with the dogs somewhat. I think they know something is off with me so they just want me to pat their head and give me kisses. Lol



    I start my first fill on the 25th and a little nervous.



    @NanG

    33? Still young too. My sister is 32 and that's nerve racking for me to imagine if shes going through what I am. I saw a thread for ladies in their 20s I might start a new one though. Seems like it hasn't been active in a while.

    I'm still not able to lift anything heavy over 10lbs. It seems on my left rib where the drains were pulled out there's a bruise so turning hurts a bit. I have a toyota camry so driving probably wouldn't be a problem. My parents are just "nooooooo!" I'm the baby of the family so they're being overly cautious. Beading seems fun!!!! My brother is ambidexterous and I'm so jealous. I can only do that in tennis.



    Pmx?

    When I was 19 i had a mammogram do e and saw a bengin tumor. I had that tumor removed when I was 20 which turned to be a phyllodes tumor (that was turning malignant and since then I had more growing but on both breast. So eventually I was tired of having a lumpectomy and my surgeon Dr. A didn't want to keep cutting me up and suggested the double mast. The pathology results were good and was cysts and phyllodes. Path report said i was high risk.

    Which in someways didn't surprise me. I don't need radiation nor chemo though.

    My mom had something similar to colon cancer and she needed 8wks extensive radiation, 2 surgeries, chemo via port for about 4mths and chem via pill 3mths or so and then anti infection pills. So I know how difficult it is to go through the chemo and radiation. It was touch on my mom who was 60 at the time going throuh all of that.

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  • luckykitkat09
    luckykitkat09 Member Posts: 190
    edited July 2012

    @JenH13

    so glad you're doing well. :)

    Chemo will be different for everyone and their experience I agree. It depends on age, endurance, stamnia, amount of dowager and how strong the dose is too.

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  • emilybrooke
    emilybrooke Member Posts: 98
    edited July 2012

    Hugs to everyone having a tough week, esp. taismom and lori!

    @JenH13 - thank you for such a positive post. I too am a triple positive and quite anxious about Monday's appt. with the oncologist. Your post made me feel a little better.

    @Nan - so excited to hear that you are driving. I hope to reach that goal by the end of this week. I reached this week's goal - to wash and condition my own hair =)

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  • curveball
    curveball Member Posts: 3,040
    edited July 2012

    bev49g--I remember Dr. Welby too, but we must be a few years different in age or have watched different networks, because I remember Ben Casey and Dr Kildare only as names. I don't recall ever having seen either show.

    Since you are positive for hormone receptors I expect your doctor will suggest either tamoxifen or an aromatase inhibtor depending on your menopausal status.

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  • NanG
    NanG Member Posts: 180
    edited July 2012

    emily...i KNOW!!! washing your hair is such a LUXURY isn't it? i went to a salon after my surgery but it was like a week or so after.  it would have been a wonderful experience except the lady who washed my hair was like scalping me every time she dug her hand into my hair.  i was like...geez...is it that greasy? lol.

    kathy...that is what i meant your dmx was preventative then? our small car is a camry too and the steering on that is wayyyyyy easier than the truck, but i totally understand your parents being protective. mine are too...but im at home with my husband and so my parents don't get to see me sneak off and drive. actually it isn't so bad now. 

    you know what is so uncomfortable for me is my intercostal muscles..between my ribs front and back are really stiff. i think they must be healing from being bruised and swollen from surgery and extra fluid and stuff because every time i turn side to side it feels like i did the chest workout of my life!  it is kind of a good pain though because i can feel them. slowly but surely i am regaining sensation in my upper body and it feels great!!

    I CAN FINALLY DO A FULL CAT STRETCH IN THE MORNING!! You have no idea how good it feels!! And this am i rolled over onto my side for a few seconds to snuggle in before i woke up and it wasn't too painful.  I try everymorning...lol. I think its actually me being really stubborn and trying to "get used to it".  It's not the same...ohhh will it ever be the same?  My wonderful pillow...nestled between my neck and shoulder...the warm fuzzy blankets all tucked up around my shoulders....and ohhhh....glory of glories my husband laying behind me....even his morning farts are nostalgic and lovely to me!  i miss these things and long for the day when i can return to them!!

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  • 3kidsmom
    3kidsmom Member Posts: 21
    edited July 2012

    Hey Curveball, you've really been on top of things.  I don't know if you can still update the list, but I am having radiation.  I won't be having anymore nodes removed.  I will then have tamoxifen for five years.  For those having chemo next, I had TAC chemo and I must say it wasn't as bad as I had feared. I hope everyone continues to heal and can get back to a normal life as soon as possible.

    Karen 

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  • curveball
    curveball Member Posts: 3,040
    edited July 2012

    @3kidsmom, you have been updated!

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  • luckykitkat09
    luckykitkat09 Member Posts: 190
    edited July 2012

    @NanG

    Yes it was preventative :)

    Lucky you! I can't do a cat stretch yet lol

    When I was sent home I had no pain except my back & shoulder blades and it's still uncomfortable but wayy better. Didn't feel pain when I woke up since during surgery and during my stay in the hospital I had an epidural in my pain to minimize the chest pain when I woke up.

    My back still hurts since I'm not so quite used to sleeping on my back but I think I'm adjusting. Took muscle relaxant and pain meds for about a week after surgery. When I start my fills I will definitely need muscle relaxants probably.

    If you get the feeling back it won't be quite as strong. The numbness for me is gone in my chest and nipples but behind my armpit area it feels numb when I touch it more so on the right.

    "morning farts" hahaha that made me smile sounds like my dad right there!

    I still live with my family so it's harder. You're hubby doesn't seem to mind letting you drive does he?

    Right now my scabs are being itchy. My mom says that means its healing. But I feel like I'm having the chicken pox and I need to stratch it!!! Chronic insomnia has also been killing me.

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  • my3sunz42
    my3sunz42 Member Posts: 148
    edited July 2012

    NanG - you crack me up! Thanks for the laugh this morning ... spooning, morning farts & cat stretches ... tis the simple things in life!

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  • emilybrooke
    emilybrooke Member Posts: 98
    edited July 2012

    NanG - I gently rolled to my side this morning and it was glorious! I'm not sure that I am ready to return to side sleeping yet but it was a treat.

    Kathy - I had some trouble with insomnia too. It went away after I stopped taking the pain meds and started taking advil for soreness.

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  • luckykitkat09
    luckykitkat09 Member Posts: 190
    edited July 2012

    @emilybrooke

    yeah I haven't had the need for advil, ivehad chronic insomnia since middle school so that doesn't help me much. How are you adjusting since your surgery?

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  • emilybrooke
    emilybrooke Member Posts: 98
    edited July 2012

    Kathy - You're a champ! No advil or otc pain reliever?  That's awesome!

    The recovery process has been a steady pace for me. I try to set small goals for myself each week in terms of the exercises that the PS has me doing and everyday tasks. As I mentioned in an earlier post, I was thrilled to wash my own hair this week. Before the surgery I loved to exercise - spin, zumba, circuit training, walking - you name it, I did it. I miss that most right now. I just want that "normal" part of my life back. I think that physically I am definitely recovering but emotionally, things are really starting to sink in =( I am lucky to have such a fantastic support system - my husband of 3 yrs is amazing, my sister is a nurse and has gone above and beyond in caring for me, and my parents and in-laws have helped too.

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  • luckykitkat09
    luckykitkat09 Member Posts: 190
    edited July 2012

    Emily

    I had took pain mess for about a week and muscle relaxant for about a week and a half and was done. :) I probably got used to the pain. My surgeon didn't really tell me to do stretches but I started doing them slowly everyday by rolling my shoulders and them my arms. It was horrible on my back since I like to pop them (bad but I can't help it). Physically I'm fine too. Although I lost some weight which is bad and my appetite has completely vanish. I normally ate 4x a day and workout like crazy. I'm not sn outdoor person unless it came to sports haha. Emotionally its sinking in for me too. My parents had helped in the beginning when I couldn't do much with my arms. My sister would check on via text. I had a little meltdown a few days ago when I finally took a real close at the incisions and freaked out s bit. It was mentally draining since I felt like a 12 yr. No boyfriend so I don't have that..I don't know "reassurance"..my self image has been "whacked" as a kid. But I think I'm gonna be self conscious till this tissue expanded phase is over.

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