Starting chemo Sept 05

Options
1…8081838586…103

Comments

  • Liezel
    Liezel Member Posts: 192
    edited November 2007

    Hi Everybody.  Hope you had a good weekend.

    Linday, good to hear Isaac is doing well. Thanks for keeping us updated.

    I have been so angry and sad the last few days.  My son Connor's teacher keeps complaining that he can't concentrate, that he talks too much, and that he can not make friends.  She said he had ADD and was tactile defensive.  He definitly does not!  But I did that him to a Play therapist to get behind the rest.  For the last 6 weeks he has seen her every week for assesment, and we had feedback on Thursday last week. 

    She agreed with me that he definitely does not have ADD and that he is not tactile defensive.  He is extremely bright and probably a bit bored at school at with friends his age.  She then asked me more about my dx, and when Connor's "problems" started.  The conclusion we both came to, was that my dx has had a bigger impact on him and our lives than we thought.  He was just 2 when I was dx, and until then my whole life revolved around him.  He got all our attention, and was generally treated like the baby he was.

    When I was dx I could not pick him up for weeks after surgery, and then with the all the tx afterwards it is suddenly 2 years later and we realise now that even though we explained to him that I was sick, he saw less of me, got less attention, and therefor became very insecure.  So now he talks to get our attention, throws tantrums and cry easily.  He also prefers adult company because he is trying to "make up" for "losing" me.  This just breaks my heart!  I have been so self absorbed the last 2 years, I did not realise what I have been doing to him.  But, now that we know, we can work on it, and I have been trying very hard to make it up to him.  I am also moving him to another school with smaller classes. Hopefully they'll know how to stimulate a highly intelligent child.  It is sad because you'll expect more from a Montessori school. I just hate this disease and what it has done to me and my family.  And it does not end!  I want to get off this bus!

    I hope you all keep well.  Sorry for my rant.  Have a good week!

    Liezel

    · Share on FacebookShare on Twitter
  • susan_02143
    susan_02143 Member Posts: 7,209
    edited November 2007

    Liezel,

    Yes, cancer just keeps giving us gifts. But, you know, you didn't "do" anything to him at all. He reacted to a blow to the family..... as best as he could with the tools he had available to him.  Isn't that what we all did?

    Teaching children is the hardest job on the planet. Sounds like his old teacher didn't have the skills to help him in the classroom. Is he going to continue to meet with this Play Therapist? Would that be helpful?

    Please don't beat yourself up. Make sure you have a written report, just to make sure that you haven't listened to her report through your "mother" filter. have fun with Connor! That is why we fought so darn hard after all.

    *susan* 

    · Share on FacebookShare on Twitter
  • foxxf
    foxxf Member Posts: 171
    edited November 2007

    bump

    · Share on FacebookShare on Twitter
  • susan_02143
    susan_02143 Member Posts: 7,209
    edited November 2007

    Happy Thanksgiving, my American September Sisters. Happy Thursday to everyone else!

    Meal is done, dishes are almost done... was a lovely day, though we all missed my daughter who spent the day in London cooking for all her friends.

    I hope that each of you were surrounded by friends and family...

    *susan* 

    · Share on FacebookShare on Twitter
  • Pegk
    Pegk Member Posts: 389
    edited November 2007

    Thanks Susan!

    I have a lot to be thankful for this year.

    I made Thanksgiving dinner yesterday in my almost finished kitchen (just some trim left to go) You all might remember that my kitchen was demolished in Oct. 05 when I was right in the middle of treatments. It's been a long hard haul, but I was very happy to be able to cook for a crowd of 12. Today I made turkey soup!

    Be well everyone!

    · Share on FacebookShare on Twitter
  • txred9876
    txred9876 Member Posts: 392
    edited November 2007

    Liezel,

    Even though my problems seem minor in comparison, as my girls were older, I want to get off this bus too. Just enjoy the time you have each day with those you love.

    I have been having my own nightmare things go on and the I finally finished chemo after 26 months! Even though hercetin is not supposed to have all the impact it sure has with me. I am so glad this part of my journey is now over. My doctor is going to order the genetic testing, bone scan and bone density test this month since I have my deductables met (small favors anyway!). I will still not be able to drive for another 3 months because cancer  and treatment has my sleep patterns so out of whack that this is what contributed to my accident in August. My husband and dauther will NOT let me drive at all (ok...had to run out to the conveninece store a couple times....less then a mile away and we live in the sticks!!). I am working less hours at work due to my illness and I just cannot wait to get to a happy medium. I go back to the sleep specialist in three months and I am not sure what will happen at that point. Basically even with the cpap for a month the most I am in REM sleep (themost restful sleep) a total of 1-3 hours a night. I go back the the oncologist on 30 days and then it will be every two months for probably a year. He is still the treating doctor for my neurapathy and we are going to see if it starts to get better now. If it does not then we will deal with the pain medicine then. I hate taking it all but without it I have no quality of life to speak of. I hurt so bad I just want to crawl up in the recliner or in bed. This is very unlike me.

    Ok...enough of the boo hooing! This is the season of happiness and not only is it the holiday season but my husband and I will celebrate one year the end of december. It is kind of ironic because he has been there for me from the begining and we are in this for the long haul! We already got the worst of the stuff out of the way!

    Interestingly enough he has AS - a type of arthritis and is on Enbrel but they may add methotrexate soon ( a chemo drug). I am just getting off and he might be getting on it....as the world turns....

    Take care all my september sisters.

    Love tina

    · Share on FacebookShare on Twitter
  • Liezel
    Liezel Member Posts: 192
    edited November 2007

    I hope you all had a lovely Thanks giving!!  Apart from everything else that is going on in our lives, I guess we do all have a lot to be thankfull for!

    Tina - Well done on being finished!!!  It will take a while to adjust, but I hope all the SE's slowly start disappearing.  I really do feel for you on the neurapathy and sleep...  I imagine the one is making the other worse.  A terrible cycle...

    I remember when you got married last year.  Congrats!!

    I have had a lot of time to think about the feedback from Connor's play therapist.  Yes, this disease has affected his life in a huge way, but I'll work very hard now to make him forget.  Every now and then I think he has, and he comes up with another memory.  He is continuing to see the Play therapist, and I have had the opportunity to watch him interact with his friends at school.  I do think he is an old soul, and finds running around in circles a waste of time.  While his friends does that, he tries to get them to do something more constructive, when they don't, he does it by himself.  His manners are amazing, so I must be doing something right.  He is an amazing little man.  And all he wants for Xmas is a sister.....

    I hope you all have a good week.  My shopping nearly done!  Our church has a Christmas Market, so I got most of my stuff there!!

    Love, Liezel

    · Share on FacebookShare on Twitter
  • susan_02143
    susan_02143 Member Posts: 7,209
    edited November 2007

    gentle bump and hugs to all of my September Sisters....

    *me* 

    · Share on FacebookShare on Twitter
  • Pegk
    Pegk Member Posts: 389
    edited December 2007

    I just wanted to let you know that I met Dr. Marisa Weiss again last night. I went to a little party in NYC to celebrate the publication of her new book, "7 Minutes-How to Get the Most from Your Doctor Visit". It's a practical and humorous guide on how to be your own advocate and develop a good relationship with your doctor. I bought a couple of copies. I think several people I know will find it useful.

    · Share on FacebookShare on Twitter
  • txred9876
    txred9876 Member Posts: 392
    edited December 2007

    Peg,

    That sounds interesting to say the least.

    Lizel,

    Thank you for the congrats...it has been a rough year but being with someone you love makes it all the sweeter!

    Your are right the neurapathy and sleep issues go hand in hand and aggrevate each other. Plus the fact that I am still on a big old bag of steroids every 3 weeks did not help. I am so GLAD to be done with those!

    Bone scan on Tuesday and I will know when the genetic testing is shortly.

    Has anyone in our group had the testing done?

    Tina

    · Share on FacebookShare on Twitter
  • Calico
    Calico Member Posts: 1,108
    edited December 2007

    Hi my September sisters,

    my heart is so heavy to read on this site.

    Tina,

    do you mean genetic testing for BRCA? I had it and I am negative, even though my mom has bc (dx after mine).

    Liezel,

    so sorry to read about Connor's problems.

    Peggy,

    how wonderful to meet Dr. Weiss, I thouroughly enjoyed the "7 Minutes.." on Cable TV and can only imagine, that the book will be very helpful to a friend (and what a lucky friend to have you as a friend).

    Maxine,

    haven't seen you post in a while, I am thinking about you. How are the issues with your hand? Anything new from the doc's?

    My daughter (15) just started on Boniva, to strengthen her hip.

    Got side effects the next day...fever and bone pain....I hate the fact that she is suppose to take it.

    Just hope it helps when it comes to replacing that joint.

    Extra prayers for you all and our sisters with mets fighting so hard.

    God BLess

    · Share on FacebookShare on Twitter
  • txred9876
    txred9876 Member Posts: 392
    edited December 2007

    Calico,

    Yes it is the brca testing. I have wondered about it but since my deductable is met I am going to go ahead and do it.

    I am sorry to hear your daughter is having a rough time of it still.

    Tina

    · Share on FacebookShare on Twitter
  • Liezel
    Liezel Member Posts: 192
    edited December 2007

    Maxine, how are you?  Have not heard from you in a while.  Don't know if I missed one of your posts.  Have you been reffered yet?

    I am so down today.  It seems there has only been bad news on the site lately.  I am so sad about all the sisters we are losing.  And now I have read that herceptin does not protect you against brain mets, and if the cancer is going to come back, chances are that it will be in the brain.  This really is my worst nightmare.  I am just so sick and tired of all this!!  I am angry at myself for even giving bc the time of day by worrying and thinking about it! 

    I hope all my September sisters are keeping well, and enjoying this time of year.  The weather is lovely and hot, and we are spending a lot of time outside, which of course does not help my LE.  It has settled in my right hand, and has even my LE therapist stumped.  Nothing seems to be helping with the pain and swelling - but believe me, I am using it as an excuse to do as little as possible.....

    Thinking of all of you!!

    · Share on FacebookShare on Twitter
  • susan_02143
    susan_02143 Member Posts: 7,209
    edited December 2007

    * gentle bump *

    My daughter arrives from London on Tuesday, and I just can't wait to see her again. Miraculously, she feels the same way. To date, I haven't bought even one gift for Christmas. The idea of being jostled by crowds just horrifies me!

    It isn't that I don't love watching people open gifts that I have selected, I just can't bring myself to go shopping. Oh well..... it could be worse, right?

    A quick recap of me... my bone pain has almost disappeared. I have given up on the fosamax. It made me very sick. Once I stopped, the bone pain disappeared.... odd co-incidence, eh? I no longer need naps, and I am able to concentrate for at least 10 hours a day. This is good stuff. I have reasons to celebrate! 

    I hope that all of you are enjoying this season in whatever way you celebrate.

    *susan*

    p.s. 3 years to the day more on aromasin! 

    · Share on FacebookShare on Twitter
  • txred9876
    txred9876 Member Posts: 392
    edited December 2007

    I am glad all of you are doing well. I will have been done with chemo for a month in just a few short days....

    I am still very tired these days but my sleep habits are getting a little better on the cpap machine.

    The nerve pain may never go away and my oncologist said as long as he is seeing me every 60 days he will not make me go to a pain managment doctor since we prettymuch have it under control.....as long as I take my regiment of pills....

    I hope everyone has a wonderful holiday season!

    tina

    · Share on FacebookShare on Twitter
  • tinkermax
    tinkermax Member Posts: 269
    edited December 2007

    Hi everyone

    Thanks very much for your thoughts.

    I saw my general doc again today, we are now looking at the posibility that I  may have Sudecks Atrophy, which, if it is, would mean I may have cancer back.  I am going to have a bone scan, and see what that shows, if nothing shows, I will have a body mri.

    If it isnt that, it is some type of motor disorder, and my doc is saying, that mets would be the most treatable of the 2 options.

    I will keep you informed.   I am apparently, top of the list for discussion at the specialists weekly meeting tomorrow.

    hugs to all

    Maxine

    · Share on FacebookShare on Twitter
  • Calico
    Calico Member Posts: 1,108
    edited December 2007

    Maxine,

    my gosh, I don't know what to say! I still hope for some weird other explanation...is he serious about the mets being easier to treat??? Geeechhh....I find that hard to believe...

    I will definately keep prayers up for you!! Thinking about you!!!

    God Bless

    · Share on FacebookShare on Twitter
  • Calico
    Calico Member Posts: 1,108
    edited December 2007

    Liezel,

    sorry to hear about your LE.....and you are right, the fear will be with us all forever...so awful.

    Tina,

    I hope you'll feel better as the weeks go by!

    Susan,

    I am not a shopper either, I don't want to go.....10 hrs concentration, huh? Send me some for Christmas, I could use it lol

    Good for you!!! Keep up the calcium and vitamin D.

    Hope everybody will find some joy during this sad time of losses on the board.

    I felt like calling the local news channels Santa and ask for HEALTH as a present.....

    Hope we hear from the rest of our September sisters soon.

    God Bless

    · Share on FacebookShare on Twitter
  • Pegk
    Pegk Member Posts: 389
    edited December 2007

    Hello Ladies,



    I've been very busy at work lately and this is my first stop back in a couple of weeks. I'm almost afraid to look at the rest of the board.

    I have the next 2 weeks off and I'm planning on taking it easy. I did most of my Christmas shopping online.

    I had an oncologist appt. a couple of weeks ago and she noticed "something " in my right breast, so I'm scheduled fro a mammo and US the first week in Jan. I'm convinced it's scar tissue from my reconstruction/reduction surgery (as I say a little prayer-as I will pray for Maxine, Liezel, Calico and her daughter, Tina and the rest of you that you'll get answers to your medical problems)

    My 2 daughters came home from college yesterday and I'm looking forward to spending time with them.

    They've been less than 100 miles away and I've been seeing them regularly. Susan, I'm sure your daughter will have some incredible experiences to share with you. Enjoy!



    I hope you're all finding joy and comfort in the holidays.

    · Share on FacebookShare on Twitter
  • sholroyd
    sholroyd Member Posts: 288
    edited December 2007

     Hi all - remember me -  I do not find it easy to access our boards - I will be trying my best to though in the future after reading the posts - I do think of you all and will be doing as you go through more difficult times.  I don't feel wonderful myself; will be having an MRI (head) in January - the ear specialist doesn't think it is what I am thinking and says he is doing it to almost 'put my mind at rest' - I have 'drilling' noises in my ears and it is driving me nuts. 


    Let's all raise a glass to all September Sisters when we eat our Christmas dinner and also in the New Year.

    Here is my Christmas card to you all with my most sincere best wishes.

    Sandra from the UK

    http://www.jacquielawson.com/viewcard.asp?

    code=1352748357586&source=jl999

    · Share on FacebookShare on Twitter
  • Liezel
    Liezel Member Posts: 192
    edited December 2007

    Maxine, wow!  I can not believe what you are going through.  I think of you often, and I will keep you in prayers.

    Sandra, I can imagine you must be going through hell.  I hope your ear specialist is right, but I am glad he is doing the MRI.  Thinking of you.....

    Peg, good luck.  Hope it is only scar tissue. 

    I hope you all have a good Christmas.  Let's all say a special prayer for our sister who are having concerns.  I think of all of you often as we continue on this journey. 

    Hugs,

    Liezel

    · Share on FacebookShare on Twitter
  • Calico
    Calico Member Posts: 1,108
    edited December 2007

    Cheeech Peggy,

    hopefully it's just that.....better to make sure!!! Will pray for you for benign results.

    I am counting down again toward my visit with the onc and PET for early Feb.....grrrr....

    Sandra,

    I have some noise too....more like buzzing, or ringing....lol....hear it mostly at night.

    Liezel,

    I join you in that special prayer!

    Happy Holidays!

    · Share on FacebookShare on Twitter
  • txred9876
    txred9876 Member Posts: 392
    edited December 2007

    Things

    · Share on FacebookShare on Twitter
  • txred9876
    txred9876 Member Posts: 392
    edited December 2007

    Things

    are
    · Share on FacebookShare on Twitter
  • txred9876
    txred9876 Member Posts: 392
    edited December 2007

    Things

    · Share on FacebookShare on Twitter
  • sholroyd
    sholroyd Member Posts: 288
    edited December 2007

    Tina, what's this all about??

    I had the gene test, ages and ages ago - came back BRC1 and 2 not present - would have had huge impications on family (insurance, mortges etc) if had come back positive.

    The noise in my ears sounds like a distant pneumatic drill - it is suggested that ' toxic treatment' may have damaged nerve endings.

      

    Best wishes for 2008 all September sisters.

    Sandra from the UK.

    · Share on FacebookShare on Twitter
  • Calico
    Calico Member Posts: 1,108
    edited December 2007

    Sandra,

    that's certainly good news, I am happy for you.

    Tina,

    you okay?

    Peggy, only a few more days! Hope you don't have to much anxiety (yeah right)...

    Just went on my 3 mile daily hike/run and it was beautiful outside, need to get rid of the holiday pounds....I hate new years resolutions..

    God Bless

    · Share on FacebookShare on Twitter
  • leannem
    leannem Member Posts: 137
    edited December 2007

    Hi all my lovely september sisters



    Tina- is everything okay??



    Thinking and praying for you all as usual and more so now that we all seem to be having our health worries. I hope you all enjoyed Christmas and enjoying your holidays.



    My onc stopped my herceptin last week- it has been exactly 2 yrs on it now and he thinks it is time to finish. As I always say, it is hard to know what to do with the might be/might not be liver mets scenario.



    I will pop back in again soon and write properly but wanted to let you all know I am thinking of you



    xoxoxo

    · Share on FacebookShare on Twitter
  • lynellb123
    lynellb123 Member Posts: 69
    edited December 2007

    Wow- I just had the chance to read and catch up with all my September sisters. It seems like we can't just move on from this terrible club that we all joined. I hold all of you in love & light and send positive healing out to all my sisters in need.

    I celebrated my 50th birthday back on Dec. 14th and did so with a big celebration and a lot of fanfare!(this is from a woman who lied so much about her age that I really wasn't sure of my real age!) My theme was BonJovi's-My Life. I love the chorus it says "It's my life..it's now or never. I ain't gonna live forever...I just want to live while I'm alive". That's been my mantra to live every day without regrets. Some days are easier than others.

    Today was a very sad day for me, I lost my beloved cat "Butter". He was 15 years old and very loved. I guess it was a positive thing that I was home because if I came from work and found him, I would have been devastated. He was eating and just rolled over and must have had a heart attack or stroke. He went quickly and peacefully. My other cat Lola, has been looking around for him as I'm sure I will do for the next few weeks as well. My DH has been having health issues since Thanksgiving and was finally diagnosed with Polymyalgia rheumatica. It's an inflammatory condition that affects the joints and causes a lot of pain. He went through so many crazy symptoms we didn't know what to expect. He's on a steroid right now & that's helping him somewhat, but he hasn't been himself. Please let the New Year bring positive news to all of us.

    I sincerely wish all of my September sisters a very happy & healthy new year. Hopefully, 2008 will offer us peace, good health and all that we hope for. Happy New Year my sisters- Much love to you all!

    · Share on FacebookShare on Twitter
  • sholroyd
    sholroyd Member Posts: 288
    edited December 2007

    I am going to party tonight and I will be raising my glass to you all at midnight here in the UK.

    xxxxxxxxxxxxxxxxxxxxxxxxfrom Sandras in the UK

    · Share on FacebookShare on Twitter

Categories