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Illinois ladies facing bc

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  • Graceembraced
    Graceembraced Member Posts: 86
    edited January 2013

    Chgogemini

    I too had 14 chemo session with three different cocktails. Four rounds of AC and 12 rounds of Taxol. I found these wonderful ladies before I began in June and they assured me with nausea meds and cell boosting meds, chemo is doable. That's the words I heard several times "doable". I finished chemo in October and finished radiation after Christmas. And "doable" is the right description. No one chooses this path, but we can make it through it. It was the hardest thing I went through, but I worked throughout all my treatments, taking days off when I crashed from steroids or from fatigue. Work helped keep me focused and distracted when I had the energy. It was the forty minute drive home that exhausted me too.



    All these words of wisdom are valuable. You will find what works for you. I began meditating when I got my diagnosis. I knew I would need a place of calm to go to and I used it often. Through CT, bioposies, bone scans, treatments and more. It was a place I could go to and focus on the goodness in my life, my DH, DD, DS and all the people in my life praying me through it.



    I lost a breast, all my hair and I am now facing the final seven months of Herceptin and looking forward to doc saying "everything's great". You will get there too. I loved my long full straight 15" of hair that I chose to shave off. I felt loosing it in chunks alone in the shower would be worse. My family shaved me, you can read about it at http://graceembraced.wordpress.com/2012/06/17/how-would-people-describe-you-physically/ it was the most beautiful but hard evening of this journey. I don't look like myself in wigs, scarfs or hats. But my hair is growing back and like my daughter says "it's a symbol that the cancer did not win." Fight, fight, fight!



    Stay strong, lean on others (including this group) for support and encouragement and focus on a healed body.



  • illinoislady
    illinoislady Member Posts: 41,001
    edited January 2013

    Gina, you have gotten really good advice.  Most of us had 'chemo' terrors, but once you get started and do the first one and really know how it works, you should be able to pretty much relax.  Yes, sadly the hair mus go, but it doesn't stay gone.  The thought that was uppermost in my mind was that doing what I did, I was a very active participant in helping to save my own life.  Making sure to do what I could.....even if it seemed so very unplesant and unwanted so that the people I love so much, and the ones who love me had the biggest opportunity to see it all be a success. 

    I am one of life's winners as are all the ladies you are talking with right now.  There are  people who depend on us, and in turn those we depend on  ----  so no matter what we had to go through we kept our balance.  We helped each other through the hard parts and now we will help you.  You are a little overwhelmed looking at a whole picture, but you will reach a point I hope where you can separate it into much smaller parts that will be easier to handle...less daunting.  I hope as so many here have talked about......you will reach the top, look back, and be amazed at how WELL you were able to come through. 

    Peace & love,

    Jackie

  • mdg
    mdg Member Posts: 1,468
    edited January 2013

    Gina - glad we spoke and I hope it helped.  About the caps...I HATED to be cold.  I felt cold all the time for years and I was so worried I would not be able to tolerate the caps....that was a huge fear of mine.  Quite honestly with an electric blanket on - after a few minutes the caps were not bad at all.  I suffered 10 times worse icing my fingers and toes to try to reduce my odds of neuropathy.  THAT was the worst part for me.  Seriously.....I am not kidding.   I kept asking my poor DH "how many more minutes....how many more minutes?  What time is it???" all while I was icing hands and feet. We can talk more about the caps....feel free to call me.  I know other girls that have used them (most not local) but they would talk to you in a heart beat on the phone if you want to hear someone elses experience.  Cold caps are like many things along the BC path - they are a choice in your treatment.  They are not right for everyone.  Each person has to evaluate the information and like anything else we make decisions on, decide what is right for them.  I am very happy with my choice of using the caps and I feel it was the right choice for me.

    Hi to all - it has been super cold but I have been enjoying that beautiful sunshine!  The sun has made those early morning runs so much more tolerable!  The puppy is getting BIG.  Took her on her first 5 mile run today!  She was dragging me up the hills!  I have my own personal trainer....no slacking I guess.  Once it's warm - I would love to meet up with  you west side gals and do a nice walk.  It would be lots of fun!

    Hope everyone is doing well.  I know someone was having a scan....I think Rene?  Saying a prayer for the "all clear"!  I also get very bad aches in my legs and hip area and I believe it is due to tamoxifen.  It comes and goes.  I usually feel some relief after I workout though.  Another reason I can't slack! 

    Missing you girls....we need to plan a spring or summer get together! 

  • mdg
    mdg Member Posts: 1,468
    edited January 2013

    Oh just wanted to post this link again.  This organization sends letters/cards to newly diagnosed BC patients.  They are looking for people to write letters they can distribute.  I just wrote 5 letters!  Please consider writing some words of encouragment to someone who just got the BC diagnosis.   I know it would mean a lot.  Here is the link!

    http://www.girlslovemail.com/index.html

  • chgogemini
    chgogemini Member Posts: 22
    edited January 2013

    Mdg



    I loved talking with you the other DAY! U MADE MY DAY. I will be calling u soon but I dint want to knew a PITA.



    My Italian buddy

  • spunkyboobster
    spunkyboobster Member Posts: 563
    edited January 2013

    Wow- go out of town for a couple days and you miss so much! 

    Rene-I hope all went well, please let us know how it turned out.

    Gina-welcome. You 've received so much good advice and guidance, I don't have much to add other than focus on the long-term goal (if i was as talented as Lago I would insert link to Sat. Night Fever's "Staying Alive" here).  One thing that helped me (and someone else mentioned it, too) was meditation. I wasn't much of a believer, but I participated in a Rush U. study that had me meditating everyday and it changed my life.

    Timbuktu-if I read your post correctly-you're almost done with chemo?  Woot!!!

    Susan-so happy to hear you are getting the help you need. We are of no use to anyone if we aren't healthy (medically, spiritually and emotionally) ourselves.

    MDG-glad your 4-legged personal trainer is keeping you honest. My workout partner had to have knee surgery and isn't recuperating well at all. Vet thinks there may be neurological damage or she may have had a stroke which has left her unable to walk. We go back to the vet on Saturday, may need to make a hard decision.

    Lago-sounds like you're going to need a vacation when this job ends!

    I hope everyone is staying warm as we move into some frigid weather. Miss you all-sending heaps of hugs and positive thoughts. Smile

  • Rene23
    Rene23 Member Posts: 290
    edited January 2013

    Good news. :). No bone mets according to a little bird who saw my results already. I'm still waiting o hear from my onc's office, but I am breathing a lot easier today. My back is still hurting but dealing with it is much easier knowing its not from mets.



    Thank you so much for all the support and good wishes, ladies. This will always be a haven that I (all of us, really) can turn to for real empathy and understanding - through good news or notsogood news, I'm truly grateful for this forum being here.



  • mdg
    mdg Member Posts: 1,468
    edited January 2013

    Spunky - extra prayers for you pup!!!!

    Great news Rene!!! :)

  • illinoislady
    illinoislady Member Posts: 41,001
    edited January 2013

    Echo'ing mdg.  Big sighs of relief and huge hopes for your #1 fan.

    Love & peace,

    Jackie

  • ritajean
    ritajean Member Posts: 4,042
    edited January 2013

    Yea Rene!  Breathe in, beathe out, and go on with your life!  You are right.  Now you can deal with the back!

  • Timbuktu
    Timbuktu Member Posts: 1,423
    edited January 2013

    Spunky, don't know what I wrote but I finished chemo last March.  Well, finished with the infusions, I'm still feeling the effects!

    As for the cold weather, last year when people complained about the weather I thought "i'll take any weather at all!"

    ;-)  Glad to be here to feel the cold winter air!

  • zap
    zap Member Posts: 1,850
    edited January 2013

    Rene, so relieved for you. Those little MRI  "birds" know how stressed we are and they become angels when they  let us know as soon as possible what it is not!  Rejoice with a celebration.  You may have a disk problem and they are quite fixable.  Go to an orthopedic person.  I have several disk issues that fixed themselves....that does happen.

    Spunky  thank you for the kind words.  I was a mess and now I am functioning. Sleep deprivation, ladies, is very very dangerous to your mental and physical  health.  I am glad he did not give me sleeping pills as they are getting such a bad rap lately. I need to be alert when alertness is needed.

    I am so sad about your pet. 

    Finally wish to share a story my hair stylist shared with me.  She has a third grade girl who asked to shave her head to support cancer.  Her mom does not have cancer.  She would get money to give to a kid cancer cause if she had someone shave her head.  I would have said no way...wait untl you are older.  My stylist in fact told her daughter that it might  be hard to face her friends going bald, but she would support her if she really wanted to do this. The daughter said she wanted to shave her head.  Her dad is an army guy on leave right now.  He went into his daughter's classroom early before his bald daughter  entered the room to explain to her classmates what to expect as he was worried they would tease her.  He explained that she did this because she wanted to help a lot of kids  who are sick  and her classmates listened. His daughter then entered the room and they applauded her....no teasing.

    I am just so touched by this.  My stylist said that she was worried but her dad and his dad all did hair and she took the mystery out of hair and how it comes back.  Hair is really important, I guess, for lots and lots of reasons, as this third grade girl showed. Her loss was someone's gain. So if you are losing hair to chemo, of course allow yourself to be upset, but know that hair will come back. 

    Finally I spoke to Marie at the holiday party about the cold caps, and to be honest they sound great.  They worked for her.  It never came up for me and I wonder why.  Do what works!

    Susan

    Just wanted to share.

  • timbek2
    timbek2 Member Posts: 64
    edited January 2013

    I love that story. Its really special. I told my own family I wanted them to keep their hair. It's bad enough that I have to freeze this winter by being bald. They can support me in many ways. My baldness has really opened my eyes. I am not my hair. It cannot change who I am. If I let it bug me then the cancer wins and I won't give it anything. So I will wear my wig when I want to blend in and keep smiling and teaching my kids as always that its the inside that counts. Character. Strength that only God can provide. That's what gets me through this. Love to all of you. And many prayers for happy and healthy days.

  • illinoislady
    illinoislady Member Posts: 41,001
    edited January 2013

    Timbek...good for you.  What a fantastic spirit you have and that is the part of us that it totally, honestly and deeply us.  You are so right when you say you are not your hair.......you are not any of your individual  body parts.  You are a very unique spirit and you are adding so much to yourself even though some hair ( whicdh does in fact come back ) is gone.  In your ability to be 'able' to live without hair for awhile ( it is something that for the most part defines all of us outwardly ) you are receiving so much more than the hair that will come back. 

    I applaud your ability to recognize what is important and what is not.  Please do know anyone else, that it is a very individual thing and do not feel at all bad or somehow dimished if you do not seem able to find this spot of acceptance within yourself.  There is a time and a season for everything....and we don't always know what they all are.  You may be the one who finds deep learning and acceptance with something else.  Try never to despair about just where you are in life.....it all has great meaning and somewhere in all of it is a plateau of comfort. 

    Life and the twists and turns....and sometimes very deep learning is always an amazing thing to me.  We are bound to the earth but so much freer than we think. 

    Wishing you all lots of learning and lots of amazement.

    Peace & love,

    Jackie

    oops...spell checker not home.

  • Teresa
    Teresa Member Posts: 1
    edited March 2014

    Anyone here going to Lutheran General Hospital in Park Ridge?

  • lago
    lago Member Posts: 11,653
    edited January 2013

    Yay Rene!

    Tomorrow is my last day at this gig. I called the recruiter this morning. He said they will find a replacement for me but wanted me to finish the week. I'm OK with that. Next time I'm not going so far out, even for a few weeks.

  • mdg
    mdg Member Posts: 1,468
    edited January 2013

    Oh and Gina you are not PITA!  Can't wait to meet up - next week! :)

  • Timbuktu
    Timbuktu Member Posts: 1,423
    edited January 2013

    I knew several people who went to Lutheran and were very happy with it.  I did not have a great experience there.

  • kjiberty
    kjiberty Member Posts: 687
    edited January 2013

    Lauren:  I am glad you hear you will finally get your life back.

    Gina:  The time will go fast.  I was terrfied, as I am sure everyone was here at the thought of doing chemo and the hair loss. I am 7 months PFC, and my hair has been cut 4 times (including tonight).  It will grow back.  Maybe not the beautiful hair you had, but you WILL still be beautiful with your new "do".  I get compliments on my new "haircut" all the time.  

    Rene:  Great news!!! Congrats!

  • lago
    lago Member Posts: 11,653
    edited January 2013

    Gina I too had beautiful hair. Very straight and silky. I wasn't as worried about the hair loss as I was about losing my eyebrows. I actually bought Anastesia Brow Duo for my eyebrows 4 weeks before my surgery (over 2 months before chemo!). I never did lose all my eyebrows but they looked great because I filled them in with this cosmetic product. I actually have my mom using it now.

    Anyway I was worried that my hair would come in poodle. Having straight hair all my life I just don't doo curls. You can see pictures of me as a kid where my mom tried to make 2 giant pig tail banana curls with my hair (remember dipitido?) My mom would give up and pull my hair out of the pig tails.

    http://i1088.photobucket.com/albums/i323/lauren3g/5yearsold.jpg

    I would then have a slight wave to my hair. But my hair came back just fine. Initally with a slight wave and not as shiny but after about a year-18 months my old hair was back 100%. Shiny and striaght. I ended up keeping is short. It's so easy and I've regained 25 minutes a day back not dealing with styling.

    Here is my hair transition link. First on the right is 1 week before surgery. Next is the day it started to fall out. I had it cut short. The next photo when it really started to fall out. It's not dirty just much thinner (I have a lot of hair) and limp. Then a picture of me in my wig 2 weeks post 4th chemo (notice I look fine and attending my nieces Bar Mitzvah). All the other pictures are after chemo.  Dates are in the lower left.

  • timbek2
    timbek2 Member Posts: 64
    edited January 2013

    Lago. Love your hair pics. How did you create this timeline. I'd like to create the same to see my progression. Gives me hope. With two rounds left I know have peach fuzz only but it's trying! I had really thick dark hair before. I really miss my bangs! And hair touching my shoulder. For this I think I'm getting another wig to trsnsition me. I don't wear it much but sometimes you just need to blend in. Gina the American cancer society provides a free wig for chemo patients. Mine has been wonderful. I'm wearing in my avatar. It's just getting a little ratty these days. I'm using some Christmas money to splurge for a new one. My insurance won't cover it but many do. Have a great day all. I'm gearing up for my 11 year olds birthday party here tonite. 4 friends. Playing minute to win it. Should be fun. Life goes on!!!

  • ritajean
    ritajean Member Posts: 4,042
    edited January 2013

    Timbek2...Have fun at that special birthday party tonight!  As for your wig, I think the one that you're wearing in your avatar looks very natural!  You are so right...........there are times when you do really need to just blend in and the wig solves that problem.  They're like a security blanket when they are needed.

    Susan, so glad that you found a way to deal with everything.  I admire you for getting the help that you needed.  This has been a very emotional and rocky road for you and your hubby.  Hugs!

    Yesterday was a good day for us.  We closed on our flipper house.  A nice young couple bought it.  They were so excited and it will be a great home for them.  Pay day for us!  Yea!  I don't think that we'll look for another to renovate until we get back from Florida and then it will be one that requires less work.

    Well, I am doing laundry and need to write some scholastic bowl questions so I need to get moving.  Everyone have a great Friday!

  • chgogemini
    chgogemini Member Posts: 22
    edited January 2013

    My doctor wrote me a prescription for ampitriptylane to help me sleep. Anyone here try this and what exactly is it im scared to take it. It's 10 mg in dont know if that's strong.

  • smerf
    smerf Member Posts: 476
    edited January 2013

    Hi chgogemini,  sorry you are having such a tough time.  The script is an antidepressant, and 10mg is not a big dose. Are you supposed to take it more than once a day? You can look it up at Drugs.com if you like. Was it prescribed by your onc, or another doctor?

    Once you start getting some sleep, all these other things will seem more manageable to you. Ladies here have given you some good advice, and all stand ready to support you through it. I'm almost 8 years out now, but I remember wanting to start chemo as soon as possible just to get it over with. Hang in there, you can do it!

  • Adey
    Adey Member Posts: 2,413
    edited January 2013

    Yep, you can do it!  Try Valerian Root first if you want to wait on the drug.

    Hi ladies!  Long time no post!  I'll fill you in soon.  Love and hugs to all.  (c:

  • smerf
    smerf Member Posts: 476
    edited January 2013

    I would discuss it first with your doctor before you take anything, just to make sure it won't interfere with anything else you might be taking, chgogemini.

  • Adey
    Adey Member Posts: 2,413
    edited January 2013

    My bad!

  • chgogemini
    chgogemini Member Posts: 22
    edited January 2013

    I know I keep posting over and over but in really panicing today. I can't enjoy my family or enjoy life right now. I think of chemo and i feel like puking that's how nervous I am. I have my appointment jan 29!l rush and I'm scared to death. I can't calm down or relax. I take Xanax at night and do relax but now my md gave me that ampitriptylane. I'm not sleeping good. I feel like im repeating myself over and over and I don't feel better. Im really sad and depressed and can't shake it. My Bs team said 4 chemo doses now im worried rush might be more aggressive. How much chemo is given for stage 2a grade 1.



    Help me get out of this funk.



    Im terrified. It's hard being a mom

  • zap
    zap Member Posts: 1,850
    edited January 2013

    chgogemini:

    Your diagnosis is close to mine.  I had four chemos and frankly, they were not bad at all.  Of course that was over seven years ago.  I worked through them and wore a wig at school which I immediately took off when I got in my car.  My hair came back better than before.  I then had radiation and did not like that, but it was okay. 

    We can certainly help you here....of course we can....but you may need medical help and we cannot give that to you.  I am the lady with the sick husband.  I was throwing up I was such a mess when he was diagnosed and I was afraid to go to sleep because the nightmares were so bad.  Because my husband is sick, sleeping pills were not an option as I need to be alert to help him.  As it turns out he is in remission and doing well with his own treatments. .  I was so out of it that I went to get help (my family insisted) and I am the one seeing the psychiatrist and taking a  tranquilizer throughout the day so I can cope.  You may need to just tell your doctor just how agitated you are so he/she can get you into immediate care.  I am worried for you feeling so terrible. I have been there and I am now feeling ever so much better.

    Susan

  • lago
    lago Member Posts: 11,653
    edited January 2013

    chgogemini Some chemos can be rougher than others. 6 treatments of one type of chemo might be easier to do than 4 of another. Also some people have fewer SE. Ironically today is 2 years since I finished chemo. I feel so normal now it seems like it happened to someone else. Looking back it really wasn't too bad. Just took too long.

    ADEY!!!

    SMERF!!!