Molimoli Updating.

2

Comments

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    #22
    ConnieSW said:

    Helen

    Some practice should hire you as an advacate For the patients and the docs.

    Info from doctors (or lack thereof)

    I learned most of what I know independent of what my docs told me - from folks on here, other patients I've met along the way, and online research.  Or at least I understand it more now. They told me a lot, but it took me a while to actually understand.  I don't understand if there is a reason why surgery is "not an option" they can't explain it to you in a language that you will understand.  Part of a physician's job is to educate patients about WHY they are recommending a certain protocol. 

    I had a very interesting experience recenly.  My friend had her kidney cancer metastasize to a lung about a year ago.  This was 5+ years after initial surgery to remove the cancer.  She received her medical care at Stanford.  I went to all of her appointments with her.  Those folks spent a lot of time explaining to her (and I listened) why they recommended the treatment they did.  Duh.  It was very clearly presented in laymen's terms and they answered all of her questions kindly and thoughtfully.  Why can't all docs be like that?  It would make life and decisions so much easier.  

     Good luck on your decisions, Molimoli.  Your scan results will give you more information.  The issues that Helen and others have raised should give you some additional questions to ask.   Make them answer them.

    Suzanne

  • AWK
    AWK Member Posts: 364 Member
    #23
    Double Whammy said:

    Info from doctors (or lack thereof)

    I learned most of what I know independent of what my docs told me - from folks on here, other patients I've met along the way, and online research.  Or at least I understand it more now. They told me a lot, but it took me a while to actually understand.  I don't understand if there is a reason why surgery is "not an option" they can't explain it to you in a language that you will understand.  Part of a physician's job is to educate patients about WHY they are recommending a certain protocol. 

    I had a very interesting experience recenly.  My friend had her kidney cancer metastasize to a lung about a year ago.  This was 5+ years after initial surgery to remove the cancer.  She received her medical care at Stanford.  I went to all of her appointments with her.  Those folks spent a lot of time explaining to her (and I listened) why they recommended the treatment they did.  Duh.  It was very clearly presented in laymen's terms and they answered all of her questions kindly and thoughtfully.  Why can't all docs be like that?  It would make life and decisions so much easier.  

     Good luck on your decisions, Molimoli.  Your scan results will give you more information.  The issues that Helen and others have raised should give you some additional questions to ask.   Make them answer them.

    Suzanne

    I think some of it too depends on what we are hearing.

    We were told right away that my mets were in operable for a few reasons.  The number of mets and where they were located was spread out from kidneys to heart and diaphragm.  None of the mets had direct organ involvement but rather - were "resting" on the organs.  They were/are all adjacent to arteries.  Even one would be hard to remove given the locations without damaging the artery/organ.  The arterial proximity and number of mets make radiation a non option.  My oncologist actually showed us what a surgery would entail to even get to look at the mets or biopsy them; mainly because my husband wasn't getting what he was saying.  I got it almost right away.  

    I have a systematic issue that requires a systematic solution Being some sort of chemo or similar therapy.  We met with many more doctors and my family still didn't get why they couldn't just cut out the cancer.  Those meetings were for other opinions and to discuss trial or treatment options.  In my mind the doctors were consistent in what we were told but I realize now that my family wasn't hearing what they wanted to hear.  Big difference.  We are moving forward in a clinical trial and I have new mets now but I feel well and my confidence in my doctor never waivered.  I know that some of the dialogue was because my family was having such a hard time with what we were being told and different doctors have different ways of sharing that information.

    hugs to all!

  • molimoli
    molimoli Member Posts: 514
    #24
    Thanks a Million Ladies.

    I have read all your  posts ,in them  I hear words of wisdom, concern , encouragement,  snippits of  personal journeys, understanding and compassion,Most of all I feel cradled,for it all I am grateful.

    I will give serious thoughts to all suggestions and advice including the suttle ones, LOL  From you ladies I get my strength. I hugged your imaginary selves in return.

    I will keep you posted after scan result

    Helen, you have not offended me in anyway, I needed answers that no one was giving,Your opinion opened my eyes as to a  possible answer,One that I should have thought of but didn"t,  one that makes 100% good  sense.In doing that  you have helped me to see what the doctors couldn't voice.  I simply thank you, my load is suddenly lighter.  As penned by the other ladies , they and newbies coming round the bend also thank you..

    Your streight forward way of delivery knocks  wonderment and procrastination out of head. PS; wonderment is not a word but it suits the purpose.lol.

                                                                           Showers of blessings and Nuff love to all.   Moli.

  • molimoli
    molimoli Member Posts: 514
    #25
    Updating,

    Hi Ladies, hope you are all weathering the storms , And treatments going well. 

    I had my scan review yesterday.

    Good news ,no new mets

    Bad news; the 2 Pelvic tumors are still growing. one as big as an orange and the other a tangerine as per my doctor, we both laughed when I blurted out, that I suddenly feel like an engraphed tree.      Again Chemo is presented as a must,  I am  all cancered out and suspending any thoughts.

    Wonderful news: Planning a trip to Negril,Ocho Rios and Montego Bay,Jamaica.

    Anyone  feeling up to a trip? I really, really do.

    Nuff love Thanks for the company. Moli

  • Kaleena
    Kaleena Member Posts: 2,088 Member
    #26
    molimoli said:

    Updating,

    Hi Ladies, hope you are all weathering the storms , And treatments going well. 

    I had my scan review yesterday.

    Good news ,no new mets

    Bad news; the 2 Pelvic tumors are still growing. one as big as an orange and the other a tangerine as per my doctor, we both laughed when I blurted out, that I suddenly feel like an engraphed tree.      Again Chemo is presented as a must,  I am  all cancered out and suspending any thoughts.

    Wonderful news: Planning a trip to Negril,Ocho Rios and Montego Bay,Jamaica.

    Anyone  feeling up to a trip? I really, really do.

    Nuff love Thanks for the company. Moli

    Hang in there, Moli!

    Well that is good new no new mets.   But those darn pelvic tumors better stop!

    Sounds like you are going on a cruise?   Sounds relaxing.

    Sending you hugs!

    Kathy

  • molimoli
    molimoli Member Posts: 514
    #27
    Kaleena said:

    Hang in there, Moli!

    Well that is good new no new mets.   But those darn pelvic tumors better stop!

    Sounds like you are going on a cruise?   Sounds relaxing.

    Sending you hugs!

    Kathy

    Didn't win the lottery yet.

     .No cruise  Kaleena, those destinations are in Jamaica and just miles apart on the north coast . Haven for tourist

    Need some head clearing pampering. Fresh fruits and vegetables. seafood of every description. long walks by the ocean day dreaming and night dancing.My head will be relieved of the pressure, if only for a little while lots of times. My promise to me.

  • Editgrl
    Editgrl Member Posts: 903 Member
    #28
    molimoli said:

    Didn't win the lottery yet.

     .No cruise  Kaleena, those destinations are in Jamaica and just miles apart on the north coast . Haven for tourist

    Need some head clearing pampering. Fresh fruits and vegetables. seafood of every description. long walks by the ocean day dreaming and night dancing.My head will be relieved of the pressure, if only for a little while lots of times. My promise to me.

    Sounds like a perfect way

    to clear your head and make way for the decision(s) to come.  Happy to hear about no new mets, not so much about the progression of the others.  A deep breath of ocean air, the call of the sea birds, the lull of the waves.  All good for the soul and heart.  Drink it all in, dear Moli.

  • molimoli
    molimoli Member Posts: 514
    #29
    Editgrl said:

    Sounds like a perfect way

    to clear your head and make way for the decision(s) to come.  Happy to hear about no new mets, not so much about the progression of the others.  A deep breath of ocean air, the call of the sea birds, the lull of the waves.  All good for the soul and heart.  Drink it all in, dear Moli.

    Head too full, making neck weak. gotta go Editgrl,gotta go.

    You are making me want to go  right this minute, travel agent working on a best deal thing for me , since I am insisting on going alone and all the good  deals are set up for double occupancy. Deal or no deal I am going the day after the grand kids return to school,  I will be thinking of you all when I pray ,hope or wish for healing. Hang tough with your treatment and don't neglect to make nourishment a priority even when you feel like crap. A well nourished body will always stand up to the challenges. Blessings,my wish for all of you my chemosabes..

    Nuff nuff love

  • Cucu me
    Cucu me Member Posts: 213 Member
    #30
    molimoli said:

    Head too full, making neck weak. gotta go Editgrl,gotta go.

    You are making me want to go  right this minute, travel agent working on a best deal thing for me , since I am insisting on going alone and all the good  deals are set up for double occupancy. Deal or no deal I am going the day after the grand kids return to school,  I will be thinking of you all when I pray ,hope or wish for healing. Hang tough with your treatment and don't neglect to make nourishment a priority even when you feel like crap. A well nourished body will always stand up to the challenges. Blessings,my wish for all of you my chemosabes..

    Nuff nuff love

    thanks for the update

    Not happy to read about your"orange and tangerine", but happy for not having more and new ones

    and for the vacation- yay!!! Have a great time!

  • Abbycat2
    Abbycat2 Member Posts: 644 Member
    #31
    Cucu me said:

    thanks for the update

    Not happy to read about your"orange and tangerine", but happy for not having more and new ones

    and for the vacation- yay!!! Have a great time!

    Glad to hear of your trip, Moli

    What a wonderful gift to give yourself, Moli! Turquoise seas, fresh seafood dinners galore, Bob Marley's place in the highlands and Dunn's River Falls all await you and will soothe your soul. I would enjoy a trip like that alone, especially if my plate was as full as yours is right now. I hope this trip will give you the time and space to develop a plan of action that feels right to you. I am glad to hear that you don't have new mets. I think those 2 fruit-size masses are treatable. I agree with what Suzanne said about doctors taking the time to provide informed consent. The ladies here with children, Lou Ann and Sandy, gave you much food for thought.

    Take good care of yourself, my friend,

    Cathy

     

  • molimoli
    molimoli Member Posts: 514
    #32
    molimoli said:

    Didn't win the lottery yet.

     .No cruise  Kaleena, those destinations are in Jamaica and just miles apart on the north coast . Haven for tourist

    Need some head clearing pampering. Fresh fruits and vegetables. seafood of every description. long walks by the ocean day dreaming and night dancing.My head will be relieved of the pressure, if only for a little while lots of times. My promise to me.

    Thanks my sisters.

    To all of you thanks for your responses full of well wishes and concerns. I am grateful  for all of it ,bless you.

     Must share, last night I  watched a few videos posted by Ms.fanciful from the ovarian board .an amazing eye opener and a lesson in  perseverance. If you find the time I recommend  watching the youtube video,I will find the name used  and let you know. Nuff love all the time. Moli

  • molimoli
    molimoli Member Posts: 514
    #33
    Taking a Cancer break.

    To all my sisters I will be away as of this morning,I hope your treatments will be successful,your pained bodies will be healed, your support systems will be strengthened,loneliness will only make brief infrequent visits if it must,your resolve to live through cancer will be renewed with fresh determination,and a cure is found quickly,in our life time so we can celebrate our luck and the good fortune for the generations behind us. Thats my prayer my hope,my wish.

    My prayer for us Today.

    My Creator ,my Lord ,my emotional sustainer, today I place our plight in your hands and I will leave it there without worry. For us and sufferers of all illnesses ,Today I am asking for sustained remission and peace of mind .I shall not worry.it's in your hands.

     Good luck ladies, I am not abandoning Fort  but Cancer has been my constant companion for too long now. Although it will be travelling with me in my gut,,when I leave home in a couple of hours I will eject it from my brain ,I swear to God I will eject it from my brain.when I do that successfully half my battle will be won,if only for 2 weeks.

    I will post periodically if internet connection is there and affordable on my cell.

    Big ,Big Hugs  ,whispers of hope and NUFF love.  Be good to you and kind to those around you ,even if you wish some of them was around someone else..lol. Moli

  • Cucu me
    Cucu me Member Posts: 213 Member
    #34
    molimoli said:

    Taking a Cancer break.

    To all my sisters I will be away as of this morning,I hope your treatments will be successful,your pained bodies will be healed, your support systems will be strengthened,loneliness will only make brief infrequent visits if it must,your resolve to live through cancer will be renewed with fresh determination,and a cure is found quickly,in our life time so we can celebrate our luck and the good fortune for the generations behind us. Thats my prayer my hope,my wish.

    My prayer for us Today.

    My Creator ,my Lord ,my emotional sustainer, today I place our plight in your hands and I will leave it there without worry. For us and sufferers of all illnesses ,Today I am asking for sustained remission and peace of mind .I shall not worry.it's in your hands.

     Good luck ladies, I am not abandoning Fort  but Cancer has been my constant companion for too long now. Although it will be travelling with me in my gut,,when I leave home in a couple of hours I will eject it from my brain ,I swear to God I will eject it from my brain.when I do that successfully half my battle will be won,if only for 2 weeks.

    I will post periodically if internet connection is there and affordable on my cell.

    Big ,Big Hugs  ,whispers of hope and NUFF love.  Be good to you and kind to those around you ,even if you wish some of them was around someone else..lol. Moli

    Good luck to you!

    We are going to wait for you!

    Have a great time!!!

  • AWK
    AWK Member Posts: 364 Member
    #35
    molimoli said:

    Taking a Cancer break.

    To all my sisters I will be away as of this morning,I hope your treatments will be successful,your pained bodies will be healed, your support systems will be strengthened,loneliness will only make brief infrequent visits if it must,your resolve to live through cancer will be renewed with fresh determination,and a cure is found quickly,in our life time so we can celebrate our luck and the good fortune for the generations behind us. Thats my prayer my hope,my wish.

    My prayer for us Today.

    My Creator ,my Lord ,my emotional sustainer, today I place our plight in your hands and I will leave it there without worry. For us and sufferers of all illnesses ,Today I am asking for sustained remission and peace of mind .I shall not worry.it's in your hands.

     Good luck ladies, I am not abandoning Fort  but Cancer has been my constant companion for too long now. Although it will be travelling with me in my gut,,when I leave home in a couple of hours I will eject it from my brain ,I swear to God I will eject it from my brain.when I do that successfully half my battle will be won,if only for 2 weeks.

    I will post periodically if internet connection is there and affordable on my cell.

    Big ,Big Hugs  ,whispers of hope and NUFF love.  Be good to you and kind to those around you ,even if you wish some of them was around someone else..lol. Moli

    Enjoy your break

    Sending hugs and love.  As always, keeping you in my prayers.  Enjoy the sunsets, some rum, the sound of the waves and focus on clearing your head and heart.  You inspire me.  Anne

  • HellieC
    HellieC Member Posts: 524 Member
    #36
    molimoli said:

    Taking a Cancer break.

    To all my sisters I will be away as of this morning,I hope your treatments will be successful,your pained bodies will be healed, your support systems will be strengthened,loneliness will only make brief infrequent visits if it must,your resolve to live through cancer will be renewed with fresh determination,and a cure is found quickly,in our life time so we can celebrate our luck and the good fortune for the generations behind us. Thats my prayer my hope,my wish.

    My prayer for us Today.

    My Creator ,my Lord ,my emotional sustainer, today I place our plight in your hands and I will leave it there without worry. For us and sufferers of all illnesses ,Today I am asking for sustained remission and peace of mind .I shall not worry.it's in your hands.

     Good luck ladies, I am not abandoning Fort  but Cancer has been my constant companion for too long now. Although it will be travelling with me in my gut,,when I leave home in a couple of hours I will eject it from my brain ,I swear to God I will eject it from my brain.when I do that successfully half my battle will be won,if only for 2 weeks.

    I will post periodically if internet connection is there and affordable on my cell.

    Big ,Big Hugs  ,whispers of hope and NUFF love.  Be good to you and kind to those around you ,even if you wish some of them was around someone else..lol. Moli

    Have a wonderful time!

    Have a wonderful time - we'll all be here waiting to hear all about it when you get back.

  • molimoli
    molimoli Member Posts: 514
    #37
    I left home with all of you in my heart and you are all staying

    A Quick note to say I am  keeping my promise to enjoy the time that I have here, I am. eating too much but the  sun is very hot so I sweat the calories off daily(don't know how I would know that  since I am suddenly allergic to scales and avoid them like the plague).

    For those of you who are experiencing set backs ,I am saddened and still converse with the Creator about you/us.Maybe I am just talking to myself , that's something I will never know for sure but the hope my one sided conversation gives me  buys me a certain peace of mind that I have placed you /us  in good hands. I am ok with that.

    For those having small showers of blessings, I am glad and encouraged.

    Anyone noticed I haven't once used that C word ?,Just keeping my promise to not do negatives on this trip.

    Hope you all find yourselves today and hug you tight,if only for a little while.

    Plenty love from  me to all of you my sisters warriors. Nuff nuff blessings.

    Back in a week Thanks for all the well wishes.I received them with thanks. Moli.

     

     

     

  • Lily_Anne
    Lily_Anne Member Posts: 39
    #38
    molimoli said:

    I left home with all of you in my heart and you are all staying

    A Quick note to say I am  keeping my promise to enjoy the time that I have here, I am. eating too much but the  sun is very hot so I sweat the calories off daily(don't know how I would know that  since I am suddenly allergic to scales and avoid them like the plague).

    For those of you who are experiencing set backs ,I am saddened and still converse with the Creator about you/us.Maybe I am just talking to myself , that's something I will never know for sure but the hope my one sided conversation gives me  buys me a certain peace of mind that I have placed you /us  in good hands. I am ok with that.

    For those having small showers of blessings, I am glad and encouraged.

    Anyone noticed I haven't once used that C word ?,Just keeping my promise to not do negatives on this trip.

    Hope you all find yourselves today and hug you tight,if only for a little while.

    Plenty love from  me to all of you my sisters warriors. Nuff nuff blessings.

    Back in a week Thanks for all the well wishes.I received them with thanks. Moli.

     

     

     

    Sounds lovely, I'm hoping for

    Sounds lovely, I'm hoping for lots of lounging and too much Sangria next week.

    LA xx

  • TeddyandBears_Mom
    TeddyandBears_Mom Member Posts: 1,814 Member
    #39
    molimoli said:

    I left home with all of you in my heart and you are all staying

    A Quick note to say I am  keeping my promise to enjoy the time that I have here, I am. eating too much but the  sun is very hot so I sweat the calories off daily(don't know how I would know that  since I am suddenly allergic to scales and avoid them like the plague).

    For those of you who are experiencing set backs ,I am saddened and still converse with the Creator about you/us.Maybe I am just talking to myself , that's something I will never know for sure but the hope my one sided conversation gives me  buys me a certain peace of mind that I have placed you /us  in good hands. I am ok with that.

    For those having small showers of blessings, I am glad and encouraged.

    Anyone noticed I haven't once used that C word ?,Just keeping my promise to not do negatives on this trip.

    Hope you all find yourselves today and hug you tight,if only for a little while.

    Plenty love from  me to all of you my sisters warriors. Nuff nuff blessings.

    Back in a week Thanks for all the well wishes.I received them with thanks. Moli.

     

     

     

    Moli

    So glad to hear from you.  I hope you enjoy this next week as much as the first one and come back refreshed and ready to fight!

    I have thought of you often over the last week. And, no scales this week either my friend! Who cares? Vacation is meant to gain. Smile

  • Editgrl
    Editgrl Member Posts: 903 Member
    #40
    molimoli said:

    I left home with all of you in my heart and you are all staying

    A Quick note to say I am  keeping my promise to enjoy the time that I have here, I am. eating too much but the  sun is very hot so I sweat the calories off daily(don't know how I would know that  since I am suddenly allergic to scales and avoid them like the plague).

    For those of you who are experiencing set backs ,I am saddened and still converse with the Creator about you/us.Maybe I am just talking to myself , that's something I will never know for sure but the hope my one sided conversation gives me  buys me a certain peace of mind that I have placed you /us  in good hands. I am ok with that.

    For those having small showers of blessings, I am glad and encouraged.

    Anyone noticed I haven't once used that C word ?,Just keeping my promise to not do negatives on this trip.

    Hope you all find yourselves today and hug you tight,if only for a little while.

    Plenty love from  me to all of you my sisters warriors. Nuff nuff blessings.

    Back in a week Thanks for all the well wishes.I received them with thanks. Moli.

     

     

     

    Sounds just about perfect

    for a vacation.  Eat, lounge, relax, enjoy!

     

  • molimoli
    molimoli Member Posts: 514
    #41
    Ladies I am thinking of you all.

    I am doing fine, How one can be so sick and feel so well is beyond understanding.I am grateful for the feeling well days though. Showers of blessings to you all . Nuff love. I will be home on Friday,Will post all the drama shortly after.lol.

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