Illinois ladies facing bc

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  • hawk
    hawk Posts: 255
    edited June 2012

    Love the quote!  I needed that today :-)  Thank you.

  • illinoislady
    illinoislady Posts: 46,506
    edited June 2012

    It use to amaze me as to what I would find to send.....as often I would choose a quote without looking to see "what was going on" with everyone.  To me --- a huge purpose of being alive at all.....is growing and glorying your soul.  I also think.....if through un-meant complacence, or other rote behaviors, it may sometimes take something major to put the right amt. of jolt to the system -- to kick the veil aside and start to see and have emotions that ultimately lead us to define much deeper how we REALLY feel. 

    Just my opinion, but I think ( and it shows up every night in my letters/prayers to the Universe ) being grateful, even for the negative things, is a big key.  What else could change you or your direction --- the world is not really a positive place -- so at times I think we go into complacency and compensation for that.......and we lose some of ourselves that way.  Then a crisis in the form of a disease shows up.....and its why now, why me, pretty much instead of why not.  What else of all the other smaller but still problematic things that happen to you, could shake you right down to your roots.  This....makes you sit up and take note. 

    We are here --- and while we are here ( again my own opinion ) we are meant to make the most of it and ourselves -- and sometimes that takes a real shake-up -- but I think -- after that can come more happiness, joy, fulfillment, and a deeper, stronger sense of aliveness --- and in the new normal, I hope, and think you start to cling to that and it does allow you to SEE through different eyes............to separate.  To make choices and do things you would not even think about before --- because this is your second chance -- your do-over as it were. 

    I'm glad for my do-over. It helps me to recognize things that were hiding   It helped me see that maybe I was selfish taking a little part of the world and not stepping out to say you are a part of me and I am a part of you and maybe I need to care about this a whole lot more.  So I am learning to BE on purpose.  It is a journey...parallel to my cancer journey.  I hate the disease, but a part of me sees that maybe without that as a major crisis.........I'd still be in my little world never realizing that I was a bit stagnant --- not moving or helping much of anyone else and never connecting with a better purpose for my existence. 

    I think this is probably a bit over-long......but in the end.....whatever helps you find your gratitude.  Hope you all have a fantastic day.  See you later.

    Hugs, Jackie

  • Rene23
    Rene23 Posts: 290
    edited June 2012

    Oh, Jackie, I think that post deserves a standing ovation. Such wise words.

  • hawk
    hawk Posts: 255
    edited June 2012

    Jackie, I completely agree with Rene!

  • Adey
    Adey Posts: 2,413
    edited June 2012

    BJ-  C25K week 6 workout 1 done.  Marathon?  Aaaaahhhhhhhhhhhhhhhhhhhhhhhh!!!!!!  My goal is a 5K.  (c:

    First day of summer tomorrow, huh!  (c:

    Hugs to all.

  • spunkyboobster
    spunkyboobster Posts: 563
    edited June 2012

    Csquared-I am so glad your numbers are improving-I am so sorry about the stupid se's

    Jackie-You said it! I find myself being thankful for the diseases I don't have, because I don't think I could handle them.  BC I can deal with.  Last night I ran into a woman who ran a support group I used to attend, she asked me how I was and I replied, "I can't complain".  Then I thought about it and I really can't-I find things to be thankful for with this ridiculous disease all the time.  Mind you, I'll still whine about it on occasion...Wink

    Hope everyone is staying safe and out of the extreme heat today.

  • jdwench
    jdwench Posts: 9
    edited June 2012

    Hello Ladies, I haven't been on the message board lately, and I noticed replies from back in April that I never even read. boy I'm a bad forum participant! :)

     anyway I'm wrapping up radiation, i'll be done july 3 if everything goes well. I had issues last week with not lining up? I had to redo my Ct friday, and then again today. I am going ahead with boosts and then i'll do the last 7 treatments, which they have to "replan". the whole thing is freaking me out a bit, i feel like something or someone screwed something up and now I have to do extra ct's and who know if I've been dosed right in the first place. they reassure me everything is ok, but they never figured out why i was suddenly not lining up.

    I feel like I'm getting more radiation than i bargianed for and starting to regret the lumpectomy decision (again), it's just gonna make the next 2 weeks seem all the much longer. arrrgh

     hope everyone is doing well and staying cool.

     Judy 

  • Lynn27
    Lynn27 Posts: 50
    edited June 2012

    One more day of July weather.  Thank goodness, I hate paying for air conditioning.

    On the other hand, big celebration:  four drains pulled out today!  Only two left.  I'm chanting "dry up, dry up" in the hopes that I can get them pulled at my first post-op Thur.  Dang am I glad to lose those groin drains. 

  • C-squared
    C-squared Posts: 338
    edited June 2012

    Lynn~ That is GRRRRREEATT news!!!  I just ordered drain holders today from Pink Pockets.  I have no idea how many drains I will have but I ordered 5 pair per their recommendation. 

    I'm also attempting to search for comfy tops to wear post mastectomy (7/5).  I know.., front close but I don't much care for button-down shirts so I hate to spend alot of money on them.  Any suggestions IL Ladies???

    Also still interested to hear from anyone that has had the hand and foot skin peeling.  Thanks for your response kjiberty.

  • lago
    lago Posts: 11,653
    edited June 2012

    Jackie I knew you'd chime in with great philosophy!

    Great news Lynn! You're almost DRANO

    C-Squared you can always go to a resale shop and purchase them inexpensively. I know to bed I wore XXL rapper T-shirts (well actually I still do). You might not need them that big. Also consider big loose T-shirt dress. But a couple sizes up so it's loose.

  • illinoislady
    illinoislady Posts: 46,506
    edited June 2012
    There shall be eternal summer in the grateful heart.
    - Celia Thaxter
  • invisible2
    invisible2 Posts: 70
    edited August 2012

    Hi Everyone!



    Lynn - groin drain...oh boy that does not sound pleasant! Losing my last two drains about 10 days ago was a big turning point. Once my surgeon decided that I should stay wrapped tightly in an ace bandage my output dropped like a rock within 2 or 3 days. He then kept me wrapped tightly for another week. I am now out of the ace wraps and am

    just using spanx type tops.



    I had my visit with the MO yesterday. She wants to do a Mammaprint test to see if I need chemo. She said that test eliminated the gray area and provided a clear yes or no answer. Once again I have my doubts about the insurance coverage of this test. If they decline she will do the Onco. I have a return appointment with the MO on July 9th and will hopefully have my treatment plan.



    On the DVT (leg blood clots) my bloodwork showed the coumadin was now working so I am able to stop the Lovenox injections. Another small victory!



    I am back to work (I work from home) full time but using lots of caution. I can tell my iron levels are coming up because I have much more energy. The walking of my arms up the wall is sheer torture.



    Jackie - today I chose inner peace. Yes, that quote is still taped to my computer monitor and I think of you each time I see it.



  • NancyJill
    NancyJill Posts: 127
    edited June 2012

    kjiberty: you asked when my last chemo was: February 2012, but the last chemo that really causes hair loss was October 2011. There is hope!

     News Flash: NO EVIDENCE OF DISEASE at my diagnostic mammo today!!! 

  • NancyJill
    NancyJill Posts: 127
    edited June 2012
    jdwench: they told me that the breast can change shape with radiation, so don't worry about the CT re-do. I know the end of radiation is hard. Been there, done that. You will be surprised how quickly your skin starts to go back to normal afterward, and at how good your incision looks after the swelling goes down. If you are like me, you will be so glad you had the opportunity to save your breast! Keep the faith a little longer!
  • kjiberty
    kjiberty Posts: 687
    edited June 2012

    NancyJill:  Thank you so much for the encouragement.  Just looking forward to getting through chemo (last tx next Thursday the 28th), then I will deal with the 7 weeks of rads.  I think most of my hair loss was tx 1 and 2. Not much is left to lose now, but I have random clear strands standing tall on the top of my  head.

  • NancyJill
    NancyJill Posts: 127
    edited June 2012

    Kjiberty: Yes, it was the Taxotere that balded me! I had to stop Taxotere after one cycle due to allergic reaction, that's why I ended it early. My other drug was a piece of cake (Navelbine) by comparison. Congrats for only 1 more chemo cycle to go. Rads was a real pain but at least it didn't make me ill.

  • kjiberty
    kjiberty Posts: 687
    edited June 2012

    NancyJill:  Interesting about the taxotere.  I have had allergic reactions the past two tx's with taxotere.  (They had to stop immediately, put me on oxygen, then flush me out with saline).  The last one started like that and I immediately called the nurse over and they started the flush again.  This last time they better have their act together.  Plus, I have had a nasty rash that comes and goes for the past three weeks from the taxotere.  

    Any tips on rads?  Lotions, creams that worked for you?  What did you do for fatigue?  The rads are taking me up to the day before my son gets married--9/15.  I might whine to see if I can get them done a week sooner.  We shall see. 

  • Renee53
    Renee53 Posts: 2
    edited June 2012

    Hi the big things I do is eat more fruits, nuts, seeds. veggies less fried way less sugar more salmon and blueberrys are supose to be the super fruit for BC.  Who knows it seems to change daily.

    Coffee  is suppose to be good for you in moderation like 2 cups per day.

    I exercise more do Reikki and chai qong they are both things.

    Do you go to support groups?  They help me also.  Have met some really nice ladies at them.

    Do you worry about it coming back?

    Take care and be well

    Renee 

  • Lynn27
    Lynn27 Posts: 50
    edited June 2012

    Invisible  congrats on the DVT progress.  Another bullet dodged.  Keep up the good footwork.  I dearly hope for your sake that those injections didn't hurt as much as those ** heparin shots I got in the hospital. 

    NancyJill  NED.  You are where I am longing to be.

    Its a long story how the it came out, but I found out yesterday that an aunt (she's about 83) had breast cancer treated with chemo in 1994.  She's apparently NED, which is good and she's on the paternal side, which is also good.  But, here's my absolutely baffled and quite irritated response.  My mother, who avoids difficult conversations as if they were cancer (analogy intended), never told my sister or me about our aunt and never mentioned her when I announced my own diagnosis.  My medical records are wrong because she is uncomfortable talking about unpleasant matters.  What else has she "forgotten" about?  I've noticed her pattern is repeating because she has been telling folks that everything is ok now that I've had the BMX even though - in writing - I explained about the IDC and probable need for additional treatment.  I know she grew up in an era when cancer was almost a stigma (she's 80 now), but come on.  Done venting.   

  • NancyJill
    NancyJill Posts: 127
    edited June 2012

    kjiberty: get Miaderm lotion. Use liberally. Buy online if your hospital doesn't carry it or pharmacy can't get it. I got pink, but had no breaks in the skin. My RO said it is the best product he's seen. I had no fatigue until the very end of rads, and one night just hit a wall and had to crash. I'd move rads up a week or more if you can because you will be so tender in your mother-of-the-groom gown! Congrats.

    Renee--I'm doing the berries, too. Lynn: you will get there! 

  • stjude10
    stjude10 Posts: 230
    edited June 2012

    NancyJill, that's great newsSmile

    Lynn, hang in there. Maybe that's your mom's way of dealing...by not dealing. Hugs to you!

    Renee, loving that news about the coffee. I love coffee! I have not joined any support groups aside from my bco sisters. And yes, I will always worry it comes back.

    Had my exchange and nipple recon yesterday. Not too bad right now. Getting ready to change the pad on the nipple, excited to see what it looks like. Had terrible necrosis with the mx, so hoping this healing goes better.

  • illinoislady
    illinoislady Posts: 46,506
    edited June 2012

    "Build this day on a foundation of pleasant thoughts. Never fret at any imperfections that you fear may impede your progress. Remind yourself, as often as necessary, that you are a creature of God and have the power to achieve any dream by lifting up your thoughts. You can fly when you decide that you can. Never consider yourself defeated again. Let the vision in your heart be in your life's blueprint. Smile!"

    -Og Mandino

  • hawk
    hawk Posts: 255
    edited June 2012

    NancyJill - that is GREAT news!!

    Kjiberty - my RO gave me Radio-plex lotion and also Alma deoderant.  She told me to apply 2x a day because it was expensive but the tube said 3.  I did 3.  I agree with NancyJill - see if you can either move up a week or maybe take 2 days off before the wedding and end 2 days after??  See how you feel - maybe you will sail through and not be tender at all.  Prayers for that.  

    Lynn27 - hange in there - I have felt that same frustration.  My mom has shared very little details of my grandmother's diagnosis.  I have convinved myself that she just doesn't know and can't share. 

    IllinoisLday - another beautiful quote to tape on my computer monitor!  Thank you!

    I really really want to go on July 21st because I really want to meet everyone.  Right now, I am not sure yet because my son is in a soccer tournament but my fingers are crossed. 

    It looks like we will have a break in the heat.   Perfect day to run Adey! Great work with the C25K!! Are you doing the Komen 5K in Lombard in September? Joan - wonderful news that you can bike until your back surgery!   Have a wonderful day everyone. 

  • westieluv
    westieluv Posts: 245
    edited June 2012

    Hi everyone!



    Very interesting perspectives and advice on my question. I am not on an AI and I am definitely suffering hormonely. I broke downand made an appointment with the gynecologist to discuss the new hormone pellets. They may not be recommended for high ER+ PR+ girls but quality of life's an issue.



    I'll see what he says.....

  • beata44
    beata44 Posts: 11
    edited June 2012

    Hi everyone, I just wanted to send a quick update. I'm too tired for more than that :)



    I had my BMX yesterday. It went well. 2 nodes were tested and clean. The PS was able to do a full reconstruction (no TEs) so I am thrilled. I am substantially smaller than I once was, but I can look forward to going bra less now!



    I've been discharged so I am going home to sleep.



    Beata

  • roulag
    roulag Posts: 126
    edited June 2012

    Beata - so happy to hear you are doing well. I thought about you yesterday, and am happy you are home. How bad was the surgery, if you don't mind me asking - as I am still on the fence on whether or not I want to keep my trouble makers!

  • DeborahC
    DeborahC Posts: 24
    edited June 2012

    I'm glad you're home Beata.  I am right down the street if you need anything. Roula - the mastectomy itself is not bad.  It's the reconstruction that hurts.  I had the dreaded expanders which have caused most of my pain. I have to live with them for a few more months. As Beata was able to skip that step she can tell us how bad it is without them!

  • lago
    lago Posts: 11,653
    edited June 2012
    Beata I can't believe you posted! Glad for the good news. Get some rest.
  • illinoislady
    illinoislady Posts: 46,506
    edited June 2012

    Beata.....yay for you !!!!  Here's hoping for  really uneventful time now while you get some much needed rest.  So, so glad you were node negative. 

    Hugs, Jackie

  • NancyJill
    NancyJill Posts: 127
    edited June 2012

    Congrats, Beata!