Starting Chemo April 2009

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  • JudyNaomi
    JudyNaomi Member Posts: 1,413
    edited June 2017

    Hey Ladies

    Lesley, I too am relieved by your news.

    Helen, not a day goes by when i don't think about you...please stay in touch as much as you can.

    Geri, so nice to hear from you. I am happy that we are still in touch.

    Amy, am so sorry that your daughter is sick, i hope the tests reveal the problem and she begins to recover soon.

    As you said; it's always something...

    Love and hugs to you all

    Judy ❤❤❤


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  • AmyIsStrong
    AmyIsStrong Member Posts: 1,755
    edited June 2017

    The doctor thinks my daughter had dengue fever from a mosquito bite in Guatemala. Sounds like something out of a jungle tv movie. It was very very scary but after 10 days of high fever, headaches, and body aches, it faded significantly. She is very weak. He said to expect a week's recovery period for EVERY DAY that she was sick - so that is ten weeks. To my surprise she is taking this seriously and resting. She naps every day. I think this scared her - it sure scared ME.


    Lesley how are you doing?
    Helen how are you doing?
    Sending love to all. I am going to do A LOT of resting this long weekend. I need it.

    Amy

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  • hrf
    hrf Member Posts: 3,225
    edited June 2017

    Lesley, glad for your good news. Amy, glad your daughter is recovering. Chemo sucks. I am very discouraged. I keep putting one foot in front of the other but it's hard. Everyone tells me to be strong but it's not going to make any difference. At least with breast cancer there was a chance.

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  • AmyIsStrong
    AmyIsStrong Member Posts: 1,755
    edited June 2017

    Helen - I would never say to be strong. You are right - it is not going to affect the results. There is a ton of pressure on us to 'be' a certain way. Even the name I chose on this site - I would not choose that name now. I have learned more since those early days.
    BUT I think there is help/support out there.

    I saw the cancer psychologist at my center regularly during chemo and while I resisted it at first, it was a huge help. She was unsettlingly young, but all her background was with cancer patients and she was very good. She talked to me once about her dealings with the doctors, and how upset they get if a patient cries or is upset in a meeting - that they can't stand it and reach for their Rx pads immediately to prescribe some mood meds. She said she attends those meetings to advocate for the patient to be allowed to express his/her real emotions. I never forgot that story.

    There may be someone in your treatment center (or geographic area) who offers that type of counseling or support. I would truly encourage you to think about trying it. It is refreshing to have a place you can be totally real, discuss your deepest fears/concerns and not get a cliched response. I think in a strange way, the freedom to truly express and connect with your real emotions DOES make you stronger, instead of burying it and keeping up a facade.

    There is nothing harder than where you are. I cannot say I understand. But there may be some coping strategies, or approaches you can take that will help you. I don't know. But it is worth asking about, I think.

    I follow this blogger that you might appreciate. She had a recurrence and is living with stage IV for years now. She is not always active in her blog, but sometimes more on her facebook page. No punches pulled with her AT ALL.

    http://www.butdoctorihatepink.com/ (I think she got kicked off this website - breastcancer.org - for being TOO blunt, lol.)

    https://www.facebook.com/ButdoctorIhatepink/

    Sending you love, peace and a hug. Please write whenever you feel like it.



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  • BetsyBuzz
    BetsyBuzz Member Posts: 592
    edited July 2017

    HI all...yes a blast from the past! I am doing well, loving retirement. Yesterday, I met with my onco and she suggest a BCI test to see if I should continue on tamoxifen. Have any of you done this genome testing?

    I hope everyone is well. You were all such a great support network over the years. Thank you.Hugs

    Betsy

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  • BetsyBuzz
    BetsyBuzz Member Posts: 592
    edited July 2017

    oh ladies...just started reading the old posts. Helen & Amy my heart goes out to both of you for very different reasons. ❤❤❤

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  • hrf
    hrf Member Posts: 3,225
    edited July 2017

    Hi everyone. Amy, I have been seeing the psychologist and she has been terrific. She knows me from my previous bouts with BBC so when I got this dx, I contacted her immediately. Last week I spent several days in hospital as I had extreme pain and a fever. There was infection as well as blockage in the bile duct. They did an endoscopic procedure and put in a stent to keep the duct open. Also massive doses of antibiotic. Today is the first day in over 2 weeks that I am feeling better. I have explored what other options are available for me and the answer is nothing..... so very discouraging. Right now the chemo is working but it's just a matter of time until it stops. Survival with my dx is roughly 1 - 2 years. I know we all talk about living each day to its fullest but so much easier when dealing with a hypothetical scenario. I appreciate the support I get here. Thanks for your understanding.


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  • JudyNaomi
    JudyNaomi Member Posts: 1,413
    edited July 2017

    Helen, you are on my thoughts constantly. I also can't claim to understand but was pleased to read that you have seen someone and are talking. You just be yourself. You have the right to express yourself however works best for you. Amy, I hope your daughter is feeling stronger and Betsy, wonderful to hear from you. I am doing ok, still working hard at my non profit, my daughter will be living at home for the coming 5 to 6 months so we are hoping that will be ok. In January she moves to a hostel.

    Sending you all hugs, Helen we are here for you.

    Judy 💜

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  • JudyNaomi
    JudyNaomi Member Posts: 1,413
    edited August 2017

    Ladies, how are you all? I hope the summer has passed well, I don't know where the time has gone..

    Helen, how are you feeling? You are in my thoughts and prayers every day. Amy, how is your daughter?

    My daughter is home now till January and it definitely has its' challenging moments. I hope it will be ok for her and all of us.

    Hope you all have a good weekend and sending hugs to everyone.

    Much love, Judy

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  • AmyIsStrong
    AmyIsStrong Member Posts: 1,755
    edited September 2017

    My daughter is all better, thank you for asking. It was so scary but time has helped her regain her strength. We are doing ok. I can see now in retrospect that it has taken all this time to begin to heal from the loss of my husband's daughter last June. Especially for him. He still has a lot of sadness but is more clear-headed and able to function a lot better. We are starting to make more plans for the future. I look at each good day as a win, rather than looking at how he is doing overall. Losing a child is a life sentence; you carry it with you for the rest of your life. It is not easy.

    I turn 60 later this month. I see birthdays very differently now - every one is a victory. The thought of being a very old lady seems a great privilege I hope we are all able to experience, rather than something to complain about as so many women do.

    I hope all are well. Helen you are in my heart all the time. Please check in when you can.

    Love to all - Amy


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  • JudyNaomi
    JudyNaomi Member Posts: 1,413
    edited September 2017

    Hi ladies

    I hope everyone is feeling well.

    Amy, I wish you a very Happy birthday and many more to come. I am finding it difficult to see the good at the moment. Work is doing well and there is alot going on at home, but I think that I am too overwhelmed to be happy about it. (does that make sense?)

    Helen, I have been thinking about you constantly.

    Especially as we begin a new Jewish New Year. I am sending you strength and prayers and hope that you celebrated with your beautiful family.

    Much love and hugs to you all,

    Judy ☺☺🌻🌻

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  • JudyNaomi
    JudyNaomi Member Posts: 1,413
    edited October 2017

    Ladies

    How is everyone? Helen how are you feeling? Geri, has been too long.

    Amy, so good to be in touch!

    Lots going on here, my daughter has moved into a hostel to begin another stage of her life.

    Has been a challenging week. Am overloaded with work and travelling soon to fundraise.

    Would love to hear your thoughts on our website;

    Www.place2heal.co.il

    Hugs to you all as always

    Judy ❤

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  • inthemoment
    inthemoment Member Posts: 538
    edited November 2017

    Hello, my dear friends.

    Judy, you are right that it has been too long since I've been on here and connecting with all of you. First I have to say that Helen I also think of you very often. My niece who just turned 30 has been living with stage four breast cancer for the past three years and it certainly affects the whole family. Fortunately she is continuing on with her life and work and seems to have a positive attitude. Right now the chemo that she receives seems to be holding things at bay but A few months ago she developed some new tumors in her liver. As you well know it's day by day - I hope you can do as well as she has in living life to the fullest.

    Amy, I'm glad that your daughter has healed and that your husband is gradually making his way into his new reality after losing his daughter. I just celebrated my 69th birthday and the thought of turning 70 next year is a little scary, but better than the alternative right?

    And Judy it's amazing that you always get through these terribly hard times that you face especially the challenges with your daughter now that she's in a hostel. I hope that things will settle down for you . I wish you well on your fundraising.

    As for me things have been up-and-down. As you know I had my knee replaced and while there's been a lot of improvement I still have issues with it and we're still working on it. I'm back in physical therapy and hoping that this time around I will get better relief. I also was in The intensive care unit at our hospital here with sepsis and pneumonia a few months ago. They don't know why but I was very sick for 48 to 72 hours - things were a bit touch and go, but fortunately I recovered and there doesn't seem to be any lasting problems. Then I was told a few weeks later that I had a nodule on my vocal chord. Of course that started a whole new set of anxiety for me since no one could be sure what exactly it was. It ended up that I had it removed and it was a cyst on the chord, and it was benign thank goodness.

    My daughter will be having her bilateral prophylactic mastectomy on January 25. She is beginning to show signs of the anxiety which I think is perfectly normal in a 38-year-old young woman to face having both breasts removed. She will have immediate reconstruction so we're hoping that she will at least be able to come out of the OR with breasts and it won't be such a shock. It will be challenging since my granddaughter will have just turned three and we're not sure if she can manage her even to be home with her. Family has all gathered around and someone will be with her constantly to be sure that Noelle does not jump on her or otherwise disrupt the healing process. I've offered to have her stay with me for a few weeks but right now she's feeling she needs to be near her daughter as well. I guess we'll just have to take it one day at a time to see what the best option is.

    So I believe that brings you up-to-date on why I haven't been on here very much. I hope to do better because when I'm not on here I do miss all of you. If I have forgotten to mention anyone by name I really apologize but there was just so much to catch up on. Helen and Judy, I wish you a happy new year, and for those who celebrate Christmas we only have a few weeks left - oh my,that means I have to start shopping. If I don't make it back on here before Thanksgiving I want to wish you all a most wonderful holiday and I am so thankful for all of you.

    Geri

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  • Titan
    Titan Member Posts: 2,956
    edited November 2017

    hello everyone..just checkiing in...haven't been very good in keeping up with things here....need to come back more often....sorry to hear some of this news...

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  • inthemoment
    inthemoment Member Posts: 538
    edited August 2018

    I hope that the board being quiet like this means that things are good (or at least stable) for everyone. I just wanted you to know I think of all of you often!

    Ger

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  • AmyIsStrong
    AmyIsStrong Member Posts: 1,755
    edited August 2018

    Good to hear from you Geri. I think of you all often as well. I had a nodule on my thyroid show up (on a scan for another reason) and they biopsied it and it came back 'atypical' which means not cancer, but not not cancer either. (Grey area.) I have to do the biopsy over again in Nov and they are going to send it away for molecular testing which will help determine whether those atypical cells will eventually mutate into cancer cells or can be ignored. IF the results are concerning, i have to have my thyroid removed. (or maybe just half of it) The whole thing is upsetting. it's NOT life threatening - doc was clear ' nobody dies of thyroid cancer' but going back into the patient role and medical world is highly unsettling. AND that biopsy hurt like the devil! I really do not want to do it again. Was bruised/swollen/painful for many days afterwards.

    Other than that I am fine. Back at the gym working hard and getting stronger. Everything else is going ok.

    I hope that is true for everyone else here as well. I will post after the results are in from the next test, but that probably won't be until around Thanksgiving.

    XO

    Amy

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  • JudyNaomi
    JudyNaomi Member Posts: 1,413
    edited September 2018

    Ladies, I have not posted for over a year..

    I.have followed all your posts to date

    Helen...where are you🌹

    Life is crazy busy and our eldest daughter is engaged so lots of fun things to do.

    Praying that this year brings all the best and everything we wish for.

    Love and hugs always ❤️


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  • MissouriCatLady
    MissouriCatLady Member Posts: 977
    edited October 2018

    Amy - how are you doing? How is your thyroid doing? I am new to the board, but one of your posts under getting a haircut was very helpful to me. I am also ER+/PR- HER2+. I hope things are going well and you are feeling better. Thank you for the encouragement you have shown for all of us who just found this board. Best wishes to you, Lisa

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  • AmyIsStrong
    AmyIsStrong Member Posts: 1,755
    edited October 2018

    Lisa Thanks for asking. Well the re-biopsy is scheduled for a week from this Friday. BUT when I inquired about the cost of the test, it is $6400 (JUST for the test, the biopsy process is an add'l thousand or so). They have financial aid but I do not qualify (of course). I am trying to get more info about what it will REALLY cost me, but if it remains that high, I will postpone till after 1/1, so that if I use up my (extremely high) deductible, at least it will be in January and I will have the benefit of that for an entire year, rather than just in December of this year.

    So no news yet, just a lot of phone calls. I HATE that we have to plan our health care around cost like this, but that's just too high an amount of money to take lightly. Plus the doc said that even if this is thyroid cancer, it is very slow growing and nothing to worry about.I will update when I have more news.


    Stay well everyone!

    Amy

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  • MissouriCatLady
    MissouriCatLady Member Posts: 977
    edited October 2018

    Amy, I have a friend that had thyroid cancer and he is doing amazing!! He gave me a coin to have for my treatment, it talks about a tree bends with strength. I am sorry you are having trouble with the cost of procedures and insurance. I work and have BCBS. Everything I schedule with the hospital (bone scan, MRI, ultrasound, etc.), they call before each appointment with my estimated out-of-pocket, and, since I have not met my deductible yet, so they tell me, it is always over $1000. Then they ask, would you like to take care of that today? Drives me nuts because I am just getting started, and I don't have thousands of dollars sitting around. That is not as bad as not having the biopsy you need though, and I am very sorry you have to wait. It won't be long though, and it will be 2019, but the waiting sure stinks! Thank you for all your encouragement and helping me through this. Lisa

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