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January 2014 Surgery Sisters

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Comments

  • levassel
    levassel Member Posts: 254
    edited April 2014

    I guess that's what I'm waiting to find out....the BRCA stuff.  They said it could be a couple more months.

  • Mommyathome
    Mommyathome Member Posts: 876
    edited April 2014

    January sisters,

    I need your input! When I was diagnosed w breast cancer in December 2013 I decided along w my bs that a BMx was the best option for me. We also discussed the need to eventually have my ovaries removed. I have family history of bc (mom and maternal aunt) AND ovarian  (maternal grandmother and maternal great aunt). I am ER abd PR positive. She suggested at 45 because of the surgical menopause issues. I will be 42 this august.... I have had very bad periods for the past two years and have been dealing w that prior to my bc diagnosis. I had an iud inserted in July 2012, a cryoablation in August 2013. I have found no relief! Actually it's getting worse. My periods last 5-8 days, I bleed through my clothes, pad etc I have to sleep on a hospital pad when I have my period because I wake up covered. My periods come every 17-19 days (no 28 day cycle for me). I am concerned about ovarian cancer. I had a consultation for a robotic hysterectomy last week. The dr I saw said she believes I have adenomyosis and this could be the culprit. I just want to find peace in not having these debilitating periods every 20 days and losing sleep over the ovarian cancer.... My gram was diagnosed on Thursday and gone on Saturday!! I am thankful my bc was caught early but not sure I'd be so lucky w ovarian. I was told they can't see cancer on an ultrasound they would need to biopsy. This is where I need help!!! I have been out of work since January to recover both emotionally and physically from the BMx. I  NEED to be back to work ready to teach on August. Our first day back I believe is August 25. My superintendent held my job for me as I am a first year teacher and couldn't qualify for fmla, had no dock days etc. out of the goodness of her heart she said don't worry, you recover and your job will be here in August. Problem is, the first available spot for the robotic hysterectomy is August 1! I'm worried about being fully recovered to go back August 25. My options are:

    1. Suck it up and make the best of it. Have the surgery August 1 and go back to work.

    2. Don't have the surgery until next summer. There isn't another option for a large time period to recover other than in the summer. But this would mean a whole year dealing with the bleeding and uncertainty of what's truly going on.

    Ugh!!!! At this point I booked the August 1 appt because I didn't want to lose it and asked to be on a cancellation list. I don't know what else I can do. I'm not sure if I should wait or like I said just do it and deal w the recover. Any advice, suggestions are helpful.  Beverly 

  • levassel
    levassel Member Posts: 254
    edited April 2014

    Beverly....all I could possibly say is less than a month does not sound like near enough to recover from a hysterectomy.  I haven't had one but I'm sure it would be equal to recovering from the BMX??

    Good luck with your choices...that's hard!

    Laurie

  • pinktiara
    pinktiara Member Posts: 716
    edited April 2014

    Have been thinking about how to reply to you Beverly.....

    I checked out a few sites...Mayo Clinic, Dr OZ,  Etc....

    I am understanding that your Hysterectomy can take anywhere from 4 to 6 weeks to fully recover. Now does that mean to run a marathon or go back to work?  Who knows.

    You have had C-sections ...me too...how long before you were able to get back to normal?   From what I have read a hysterectomy like you are having should be fairly easy compared to a C-section.

    But only you know how much you can handle.

    I saw where the surgery was 5 small (1 inch) incisions.  Not one big huge cut the muscle (painful) C-section incision

    I know all of this is a lot to deal with....but I have seen you deal with so much. You are a tough woman...just think if you get everything done...done and over with by Aug. 1 ...you are done girl. I can't tell you what to do

    What would I do? get it out , done, and get on with healing and life....

    love you,

    Eve

  • pinktiara
    pinktiara Member Posts: 716
    edited April 2014

    Laurie first day back at work tomorrow, gonna be good. It sounds as if you have some good friends at work that will have your back.

    Getting back to NORMAL is something I crave.

    Please let us know how it goes tomorrow.

    Best wishes

    peace

    Eve

    ps..Just wanted to say...the BRACA gene is a small part of women that have BC...no worries

  • Mommyathome
    Mommyathome Member Posts: 876
    edited April 2014

    Eve,

    Thanks! I spent the day researching today and I'm finding 4-6 weeks recovery also. The dr told me 2-3.... Y they would down play it I'm not sure. I put a call in to my reg  gyn dr to see if we can discuss doing a laparoscopic hysterectomy instead of the robotic. I'm assuming more drs in the practice do the laparoscopic and maybe I can get in earlier. From what I read there's  not much difference as far as healing... Robotic is less blood loss but more time under anesthesia, laparoscopic is possibly an extra day in hospital but 4-6 week recovery. I'm thinking if I can do the exchange June 2 and hysterectomy like June 16 that'll give me time to recover! My c sections (4 of them) took me the 8 weeks to heal. This should be less, like u said its not the incision clear across the belly. I worry that if they find something what do I do? But then again I worry more with what if something bad is going on and I wait a year?!? That just doesn't seem like an option. Hopefully the dr will call me back tomorrow, if not by like noon in calling her!!! One thing I can say is I'm getting more vocal! You ladies were right, you have to be your own advocate and don't worry about coming across pushy or bitchy. It's your health!!! I'm not going to doctors to make friends, I want to stay healthy!

  • Mommyathome
    Mommyathome Member Posts: 876
    edited April 2014

    Laurie,

    Good luck at work tomorrow!! I'll be thinking about you

  • bc101
    bc101 Member Posts: 923
    edited April 2014

    Beverly,

    Those are all hard decisions...I don't envy you. All along I've had to make some really tough choices during my treatment. It was hard for me to make phone calls, change providers, and ask for second opinions, but I did it and I'm glad. Yep, we're not here to make friends with our docs - you got that!! At the end of the day they go home to their perfect lives and never give their patients a second thought, I'm sure. How could they - they'd never sleep, lol!! Meanwhile, we're the ones who must live with our choices. 

  • mmtagirl
    mmtagirl Member Posts: 325
    edited December 2017

    man, we have some outrageously fierce and courageous women on this thread.  I am in awe of some many of you that are so young facing all this.  Hugs to all of you!

  • bc101
    bc101 Member Posts: 923
    edited April 2014

    Love this....just had to share Nerdy

    image

  • levassel
    levassel Member Posts: 254
    edited April 2014

    Thanks for all the support girls.  Tomorrow I just go in (unofficially) for a half hour meeting.  But I got new clothes...my hair done...with blue extensions and my nails done.  I want to look my very best!  Then Thursday I start half days!

    imageCan't see the blue all that good...but I think it looks pretty cool!  :)

    I went to my councillor today.  Since I mentioned to her that cancer has consumed my life....my thoughts....my conversations with others.  She suggested that instead I write my thoughts down....and stop making it the center of my conversations.  So I will start a "back to work....how I feel" journal.

    I'm going to get a real pretty one...my god if I could find one with a tiara on it that would be perfect! 

    So tomorrow when people ask....how are you...I will say great.  If that's not true....I'll say it anyway.  Then I'll write how I really feel in my journal.

    :)

    Laurie

  • levassel
    levassel Member Posts: 254
    edited April 2014

    I LOVE the comic!  Away with my tiara!  I'm moving on...and that's that!

  • girlstrong
    girlstrong Member Posts: 299
    edited April 2014

    hi Laurie, I'll think of you tomorrow as you transition back to the "real world" . You look so good; your smile is contagious...I'm smiling now too. I think journaling  is a good idea, I've done done but then decided either I was too tired or felt like it was a project I had to do. I should try again. Hugs...Marissa :) 

  • pinktiara
    pinktiara Member Posts: 716
    edited April 2014

    LOL, BRAVO, KICK ASS, IT IS ABOUT YOU,

    I too have a really difficult time standing up for myself...doctors can be really intimidating.

    However, after dealing with neurosurgeons, neuro-radiologists, neuro-oncologists all the ologists associated with my husbands brain tumor. $1,000,000 later....ladies...what I do know is.the docs...not all of them ...but most...in the end are not any different than a car mechanic. They know how to do what they do and then they do it and go home. they won't let you leave in an unsafe body any more than a mechanic will let you take your car home with out telling you all the stuff that needs fixed.

    I just deleted a bunch of crap....that you all really don't need to know about brain surgery and all the docs/scientists associated with that whole brand of medicine.

    Look ,my dear dear ladies, you absolutely have to research everything that you are being told and are putting into your bodies by way of what is going to keep BC at bay.

    I said I hurt my back...yes! major spasms...extremely painful....after a hot bath(drawn by my DH) and a good nights rest..I am ok today and was able to do 200 reps on the rowing machine...had I gone to a doc...I am sure I would have been in therapy a few days days a week. or who knows how long.

    K, I am not sure I want to post this...

    I just want everyone to just know that you all are an inspiration for me....and that we have to know that we are fabulous and strong and weak and everything that we are is OK.

  • pinktiara
    pinktiara Member Posts: 716
    edited April 2014

    Laurie...

    I was writing while you were.

    you are so pretty ....you are incredible.

    The tiara is in your heart. I can see it on your head in your picture.

    BC suks royally....but it doesn't own us.

    And being a tiara wearing , journaling princess, lets us throw off the crap of BC and move on in a big way.

    have a great day, my friend

    Eve

  • pinktiara
    pinktiara Member Posts: 716
    edited April 2014

    oh wait,

    you can't throw the tiara away...it was never meant to be a BC tiara...just a empowerment tiara....

  • lighthouselady
    lighthouselady Member Posts: 248
    edited April 2014

    Good luck as you go back to work Laurie. I'll be thinking about you. {Hugs}. You look great!

  • pinktiara
    pinktiara Member Posts: 716
    edited April 2014

    I love the the blue Laurie.

  • bc101
    bc101 Member Posts: 923
    edited April 2014

    You look Awesome Laurie! Love the hair, love the attitude! You go, girl!

    Eve, I'm with you. I am SO ready to throw off all this crap and move on! 

    Keep on keeping on, surgery sisters!ThumbsUp

  • Dtkd
    Dtkd Member Posts: 422
    edited April 2014

    LOL...I was going crazy reading all your emails on my phone, since I couldn't log in to see Laurie's beautiful pic until now!  You look maavelous...and if you look maaavelous, you feel maavelous!   I love the blue!  You will do great, and I can tell you...it really does get easier to tell people how great you are doing, and some days, it will be completely true. :)

    Michelle - Yay for getting 1/2 way there.  You are my hero! 

    Beverly - Eve is right.  Do your research and if you decide to go for it, I would try to get up and walk as soon as you can after the exchange surgery to get your circulation going.  If you know a good acupuncturist, maybe they can help you with your healing by getting blood circulating to the surgery sites and keeping your immune system strong.  There is so much we can do to help ourselves that the doctors don't tell you.

    K...my dogs are barking and I'm pretty sure I lost a gallon of sweat, since it was 85 in the dojang!  Two nights of TKD class in a row and still kicking (pun intended).  My back and my feet are really pissed that I took so much time off, I'm slow and weak, and will surely be walking funny tomorrow, but I haven't felt this alive in months. We also found out tonight that my 11 yr old son will be testing for his advanced red belt in July.  It's his last belt before black and he does a walk through during  an all day test.  Then if all goes as planned, I'll be testing for my black belt August.  We're pretty excited around here.  My son was all smiles!  I wish I could post a pic of him, but it never works.  I click on insert image and navigate to the photos  but nothing happens and cut and paste won't work either....hmmm.

    Oh well...sleep well everyone!

    Love,

    Diane.

  • Mommyathome
    Mommyathome Member Posts: 876
    edited April 2014

    Laurie,

    Wow you look so happy and strong- ready to move ahead and leave the cancer behind. Good for you. I too, have been to counseling and my social worker at the cancer center said the same thing. Don't define yourself as a person who has bc. You are far more than that. I feel like I'm always talking about bc to someone, whether it be here on bco or to people in town that know I was diagnosed and ask how I'm doing. My social worker suggested I limit my time on bco and my husband suggested when someone asks how you're doing just say good. If you sayit enough you'll believe it. I guess there's some truth in that. I told my social worker that I'm tired offering like a victim. Damn it! The cancer didn't get me! It's gone! I need to celebrate that and get to a point where I feel and live like a SURVIVOR not a VICTIM. Somedays, shoot some hours are easier than others but that's where I'm trying to get!

    I researched all day yesterday from the minute I woke up to the minute I fell asleep about hysterectomies and recovery etc. I put a call in to my dr today and expressed my concern about having the robotic hysterectomy on August 1 and will need to be back at work on August 25 100 percent ready to go. I asked about the laparoscopic hysterectomy and she said that's not an option as right now they put a hold on doing those because they actually cut up the uterus etc and if there's cancer it will spread. Well shoot!!!! So I asked her about the abdominal hysterectomy, she said it would be like an 6-8 week recovery but we can probably schedule it earlier. So I'm waiting for the nurse to call to schedule it. My exchange is scheduled for June 2. I'm thinking June 16 would be great!!! Well see what dates she has available. She said if we take the ovaries too it will put me in surgical menopause and I'm 41 so we will talk about what that means. Taking the ovaries is good in one way because then I can't get ovarian cancer and no periods, and I won't produce estrogen. (I'm ER/pr positive) but Bad in that I won't produce estrogen-- bone density, early Alzheimer's are concerns for early menopause. I'm sure there are things I can do for that... Calcium, vitamin d... Not sure about the Alzheimer's and that does worry me because my memory is bad now lol... Oh well we have to look at all pros and cons. She said I could leave ovaries in and take tamoxifen... Not sure that's a good option w all the side effects. 

    Hey thanks for letting me ramble on and thanks for your input, perspective and humor!!! I told my social worker; I'll try to cut down on the time I'm on bco but those are my January sisters- I can't just walk away. You guys are like my family- my support system that doesn't judge or get upset when I'm having my pity parties and I want to thank u for being there!!!

  • bc101
    bc101 Member Posts: 923
    edited May 2014

    Beverly - wow, you are really doing your homework. You're right. YOU are in charge of bc, not the other way around. All the counselors I've talked to think that bco is a great thing especially since all my friends are MIA. I too am trying to limit myself to being online in general because I have other sites I go to and all of them together adds up to waaaaay too much time on the computer. But I won't give up my surgery sisters!

    Diane - you are so funny! And what an inspiration you are. Out there kicking butt with your TKD right along  with your son. Wish I could help you with the pics - would love to see the two of you. 

    My brothers and I had a conference yesterday and we've decided it is time for mom to move to a memory care facility. This is going to be really hard. I'm stronger now, so I feel ready to do this, but still I have to remember to take care of me during this process. I've been helping out with mom 2 days a week, but sometimes I have to say, no, I can't do it today. Especially if I struggle to sleep and wake up feeling like I haven't slept at all. 

    Have an awesome day everybody!

  • anneb1149
    anneb1149 Member Posts: 821
    edited April 2014

    Mary- I know the choice to place your mom in a Memory Care facility is a tough one- but it is also being done with her best interests at heart. At some point, some people with Alzheimer's become a danger to themselves, in that they can't remember the difference between blue Gatorade and windex. Also, if someone else is doing the "care-taking", your time with her is freed up to just enjoy each other. I imagine some of your stress will diminish, knowing she is safe, well fed and comfortable, and you can still spend as much time with her as you want. I have always told my children that if necessary, they have my okay to put me into a care facility. What they do not have my permission for is to put me there and forget about me. I know that is not going to happen with your Mom. Stay strong, knowing you are doing this for your mom, not to her.

    Anne

  • bc101
    bc101 Member Posts: 923
    edited April 2014

    Thanks, Anne! My brother has been her full time caregiver in her home for several years and he has taken such good care of her. No one could have done it better. But at this point my brother is totally burned out and we get that. You are so smart to be upfront with your children. Wish mom had done that with us. We kind of have to guess at that since we never talked about it. I think though, that she would be horrified if she knew the truth of why we are there watching over her all the time. She wouldn't want to be a burden. I know it will be good for her. Even in her new home, we can still go out and have our special girl time together :)

  • Mommyathome
    Mommyathome Member Posts: 876
    edited April 2014

    Just to update... Changed my hysterectomy from robotic to abdominal and it's scheduled for July 1. This will give more healing time

  • pinktiara
    pinktiara Member Posts: 716
    edited April 2014

    hi everyone,

    thinking I better post now because the thunder is sounding and the lighting is getting closer....

    Beverly, good for you. You made a wise choice...get 'er done!. Are you doing the ovaries too? I went through menopause at 45...piece of cake. Done with the periods...what a relief. Your body still produces estrogen by way of your adrenal glands and fat tissue. You really want as little estrogen as possible after BC dx.  Exercise will keep your bones strong and is huge in keeping BC at bay. Being a 6th grade teacher should keep you on your feet...so no worries. I don't think about BC all that much....I am more focused upon getting rid of the weight I've gained and just life in general.  I refuse to be consumed by the "what ifs"  BC is either gone...or it may come back...who knows.   I am with mary about this site, I find being here is a very positive experience.  So I for one am staying.


    Diane, wow you rock girl...go get that black belt. Bravo to your son also. I am proud of my step son and his involvement in Boy Scouts. Good kids! The way I do pics is this...I right click on the pic and save to my desk top. Then I go into the forum and click on that button up there and hit browse...find the pic and select it....I am sure your are more savy that I but maybe that will help.

    Mary dear, so difficult about your mom. However, had to do this with a former husbands grandmom.  She had Alzheimer's also. As it turned out, she loved being in the home. LOVED it. She was afraid of being home alone even though she lived across the street from us. She had her own room and tons of fun things to do and ladies to talk to. We would bring her little dog to see her and it gave everyone a break. Time spent with her became a joy, not a chore.

    Anne...I told my boys to not ever let me become a bag lady.   As if they would. My DH is a bit younger that me....wink, wink. So I'll have a good strong young man to take care of me in my golden years....and yes! I planned it that way. lol

    Ok it is getting really black outside and the hail is coming down...gotta go!

    love and hgs to all

    Eve

    Laurie hope you had an awesome day.....

  • girlstrong
    girlstrong Member Posts: 299
    edited April 2014


    Mommyathome...July 1 sounds so much better than August 1!!!  Yeah for you!!   boy, you have had so much back and forth the last weeks, I am glad to know that you are now hopefully feeling a little more settled in your decision.  Put all the BC stuff behind you and move on to lifes new advenrtures :)

    Mary..good luck with moving your mom.  I used to work in a memory care ALF for several years and so know how difficult the transition can be.  In the end, however, you may realize what a good move this is for you mom and how she may flourish in her new surroundings.  I have seen it happen before with this population. --Marissa  

  • lighthouselady
    lighthouselady Member Posts: 248
    edited April 2014

    Mary - {{hugs}} That's a tough situation but know in your heart that you're doing what is best for your mom. And I agree with Anne - it should mean less stress for you. You'll be able to spend time doing things with her instead of focusing on taking care of her needs.

    Beverly - I'm glad you were able to come to a decision and find a surgery date that works for you. I think it's smart to space it a little longer after your exchange. I wish you had been able to do the laparascopic procedure.... that would have the least amount of recovery time. My gyn oncologist wanted to do my hysterectomy the same time as my BMX and would have but she wasn't available that day.

    Laurie - I hope you had a good "debut" back at work.

    Today I went for a pedicure with a friend...and it was her treat. :-) I haven't had one since last summer (can't have them during chemo and then no point during the winter) so it's really nice to not only have pretty toes but NOT have to do them myself!

    Unfortunately Hubby has bronchitis so he's home and miserable. And we know men don't make the best patients. Thankfully he went against his normal protocol and actually went to the doctor yesterday! Two shots and two prescriptions... so hopefully he'll be good as new soon.

    I spend way too much time on the computer, but honestly I have better "connections" with people online regarding breast cancer support than I do in real life.  I would never want to give you ladies up, or my chemo support group.  

  • mmtagirl
    mmtagirl Member Posts: 325
    edited December 2017

    Wow, a day away and all this activity! All I can add is that we can't say NO to the Tiara's. The gotta stay:-) Laurie, i think you need a blue one to match the awesome blue streak in your hair!

    Every one of you dear sisters ROCK!

  • Mommyathome
    Mommyathome Member Posts: 876
    edited April 2014

    Ladies,

    Thanks ya I'm feeling good about changing the date. I am taking the ovaries too, shoot take anything that can cause cancer!!! Lol

    I'm staying here too. I'm not going anywhere. :)

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