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Limner

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Reply with quote  #41 
 Hi dear Comrades -
hanging in there with the  WBRT.  four more treatments. to go.  i am tired of tryin to correct all my typos - please forgive for now. 
 
I went to SSA with my sister two weeks ago.  they started the process.
 
I do not qualify for SS disability.  I have  not worked 5 out of the last 10 years.  I only qualify for State of Florida SSI - like 600 dollars a month - but it gets you on the medicare thing.
 
 i am 59.  When I turn 62, I owuld qualify for SS under my former husbands income - which wold be better thatn mine.
 
Meanwhile, it turns out I have short and long term disability insurance through prudential I have been paying for at work.   I will talk to my HR person when he is back in the office - they are filling out the paper work for me at the hospital. 
 
Right now WHen I look at SSi- food stamps I see skull and crossbones, death adn hospice.
 
When i look at people at work rooting for me with their sick time, the disability insurance, maybe work part time from home if they will concur - stay in the K&S loop if I can for  now - I see hope and some QOL. 
 
600 a month in assisited living will not cut it for me. 
 
Meanwhile, I feel I am on a plan and it is so far so good !  thanks for all your input  - it is very valuable to me.  M
 

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Dear friend, theory is all grey, and the golden tree of life is green. - Goethe
csp

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Reply with quote  #42 
 Mary,
There is a forum HERE and HERE that list organizations that may be able to help take the edge off of cost and also other needs. Some organizations locally have funds set up too that unless some one goes poking around you never know exist. I hope something pans out. Maybe if you are not feeling up to all the paper work and calls inlist a family member or friend to help out . Wohoo  4 more treatments.
Prayers , love and healing thoughts being sent your way Mary.

Hgs,
Carrie

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courage does not always roar. sometimes courage is the quiet voice at the end of the day
saying.. i will try again tomorrow.
~maryanne radmacher
csp

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Reply with quote  #43 
 Mary,
 I am so sorry I just clicked on this thread and just read your last response and did not go back until now. I am upset at your doctor and his attitude.
You haven't even finished rads yet for pete sake, there is no way in Gods green earth for this doctor to know what your response will be at this point or later. My cousin continued to have response to rads even after the WBRT treatments were over, his onc, (my former onc until I fired his negative ass) Onc  gave him x amount of time even before treatment Ha how the hell did he know and thats what I told my cousin! Cousin is still doing chemo and doing good.  A message to all Dr.give ups... NO RETREAT, NO SURRENDER BABY!!

Love,
Carrie

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courage does not always roar. sometimes courage is the quiet voice at the end of the day
saying.. i will try again tomorrow.
~maryanne radmacher
Calico

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Reply with quote  #44 
Mary,
yayyy for FL disability....glad you also have long and short term disability.

Glad you can get something and that there is hope for more when you are 62...(which now is THE goal as well as to make your onc blush when you celbrate that day!!!   )

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Limner

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Reply with quote  #45 

thats right girls.  I believe my onc and his nurse truly felt defeated.  part of the issue here is that he is a top-notch LYMPHOMA onc - not BC.   together we have peiced the BC plan with the help of Gina nad Edge.  The onc has been great, and so has nurse Cathy - They do  not know what we do, though.!!!  So I do take their current outlook with a grain of salt - and I do intend to get 'my ducks in order' - but only for peace of mind; meanwhile onward to 62 and 72 and 82  - Love, M


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Dear friend, theory is all grey, and the golden tree of life is green. - Goethe
nosurrender

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Reply with quote  #46 
Dearest Mary,
One of my closest friends was treated by Dr. Roger Brito for her BC.
She got EXCELLENT CARE and is doing well
his address is:
2623 South Seacrest Boulevard
Boynton Beach, FL 33435
This is also a doctor who was at the Breast Cancer Conference I attended from your area

Mark Pegram, MD
                                                Professor of Medicine
Braman Family Breast Cancer Institute
UM/Sylvester Comprehensive Cancer Center
University of Miami Leonard M. Miller School of Medicine
Miami, FL

Could this be the person your onc is recommending for the clinical trial?

Jo Anne Zujewski, MD
                                                Head, Breast Cancer Therapeutics
Clinical Investigation Branch
Cancer Therapy Evaluation Program
Division of Cancer Treatment and Diagnosis
National Cancer Institute
Rockville, MD



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Limner

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Reply with quote  #47 
Hi  Gina -
 
 I will put all this info together you have offered me and pursue it this coming week.  I have plenty of time on my hands right now, and getting more organized.
 
 I have wanted to stick close to home (Lauderdale) bc of my job,  very limited resources and the strain on my little scattered family.   I was made aware early on of UM Sylvester, and Boynton - Of course, and again and again, the issue was always clouded by the mantle cell lymphoma.  Dr. G has supported me in getting a 2nd Opinion -I never did, because of time and resources.  
Maybe time now??
 
Edge has also said there is a 3N expert in Jacksonville at the Mayo Clinic , Dr. Edith Perez.
 
Hallelujah anyway!!  Love, Mary - There's a bright Golden Haze on the Meadow!!!!
 

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Dear friend, theory is all grey, and the golden tree of life is green. - Goethe
Indigoblue

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Reply with quote  #48 
(((Mary)))

Love your style, you are a brilliant, creative, and inspiring artist.  About the SSI, you have brought up a "sore subject", the sharp, rusted nail, festering in the heel of our America, may not be as beautiful as we thought because of a corrupt social security injustice...we pay into it most of our lives.  There are so many details, and special circumstances.  Gives me a headache to think about it...  seems like there should be a special circumstance clause, or something, to at least get you through the treatments and recovery time.  When my sister finally received SSID, it was after we found a lawyer to help us, pro bono, free of charge.  A saint, who got the wheels turning. 

If I were not married, I'd be in the same situation.  It's thorn in the side of our system that needs to be removed, and replaced with a renewed social security for reality, and not pretend...

Sending you love, prayers, and secret fairy kisses...shhhh

Love,
Indi 

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Reply with quote  #49 

Hi Mary,  Just found you over here and wanted to say hello and that I am so proud of you and your spirit handling all those.  You are doing great!!  Hugs and if you need anything let me know!!    Rainy and cold up here in Michigan.  Did you see that Miami was voted one of the ugliest men cities?  Greensboro, NC, too.  That was on the news today.  Made me laugh!!  Got any cute drs' up there?    Hugs,  Lee


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Calico

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Reply with quote  #50 
Mary,
thinking about you!!
How are you today?

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Limner

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Reply with quote  #51 
Hi dear Gina, Indie. Lee, Calico and Carrie -

 I have started on the full-tilt edge-CAM regime for brain mets,  so this  gives me confidence anyway.  Anti-inflammatory boswellic, aand fewerfew, etc.   A radiation break this weekend, then 2 more treatments of that. 

Robin and I just had Latin dinner with a friendly engineer I wanted my son to scope out and help me decide if I should let him in my life as a friend  or not.  Don't know how much I can deal with 'other people' but he is a nice guy and maybe a handy-helper.   I have to work already to keep him at arm's length.  Anyway, then on the way home, Rob and i stopped at a new 'community ' type art gallery here in Lauderdale for inspiration and that was interesting.  I have to get my creative thing happening, Indie. 

Lee, Miami is also the road-rage center of America.  SO, angry ugly men?  They are all so full of themselves. 

But I work with a bunch of peaches.  My boss called me tonight, knowing my son was leaving this weekend - called to offer anyone in the office to check on me and give me rides.  I don't know what will evolve $$ wise, but right now i feel very blessed.   SSI is only 600 a month!!!!!  I will be living in crack-town.  

Well, good night fair ones - mary  



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Dear friend, theory is all grey, and the golden tree of life is green. - Goethe
Calico

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Reply with quote  #52 
Mary,
great for the CAM start, I feel like it is going to help!!!!

Sounds like a really nice evening for you today (I'm smiling about the 'arms length'

I hope you can have at least one great thing daily worth smiling about this weekend (rads break yayyy)


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Indigoblue

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Reply with quote  #53 









 
(((Mary)))

Inspiring videos and music of  St. Petersburg, the Hermatage, bridges, and architecture...are out of order, because I love #3, however, i HOPE you love them as much as I do...the music ties it all togther...

Thinking about your keen spirit in tune with light, life and color...inspired and taken to the many levels of imagination's release...posted this for SoCal's kitchen, and thought you might enjoy this, as well. 

You are blessed with the beauty of the the lightness of being.  Love, prayers. and every moment, second, nano-seconds and wait-a-seconds. and all the seconds in-between seconds and sequence ...are all  dressed up in coats weaved with hearts & fairy kisses,  surrounding you ~ Mary~  with protective barriers and lovable dreams...

Love
Indi

CherylG

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Reply with quote  #54 
MARY ... your strength amazes me. You are an inspiration to us all. I hope that your son "approves" of your new friend. We can use all the help and friendship we can get.
Hugs and healing thoughts
Cheryl

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ChrissieD

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Reply with quote  #55 

Thinking of you Mary and keeping you in my prayers.  I hope you enjoy your break this weekend and are feeling okay.  Hoping you sail through your last 2 treatments!

Limner

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Reply with quote  #56 
Wow, you make me feel great!   my hair hurts - it is probably ready to start falling out. 
 
Big day today, ate well all over town with my two boys and the baby - it is like heaven to me to be around those dear ones - it has been way too long we have spent time together.  but one hates FL, and the other hates RI, so we meet as we can. 
 
i have been experimenting with Google docs and the calender - I think this will help me keep organized and others can participate and see info if needed - like organizing rides  & appts, etc. 
 
I am pretty tired, but very functional all day - I do believe the EDGE CAM has helped with the SE already. 
 
After lunch at a crab place, we stopped at a plant nursery - wanted some color for the patio - A fr iend was working there - a co-worker's husband - he and I found a varigated gardenia bush - you know how heavenly they smell - and then he gave it to me as a gift!     It is like Christmas 0 00   I like this Indie:  with protective barriers and lovable dreams...  Good Night - M

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nosurrender

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Reply with quote  #57 
Mary you sound wonderful...  I am so happy to see that!
I have been meaning to ask you, are you going to the same rad place with the dishy valet parker?


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Limner

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Reply with quote  #58 
I sure AM - he calls me Miss Mary - he knows I am old enough to be his Mom now, because Robin has been driving me over.  I am hobbling around with my Bass World adjustable $15.00 walking stick with compass on top.   Alex is slammed with cars in front of the cancer center - Maserati, Lexus, BMW - all the rich people - he keeps the Jeep in the shade for me because the AC is broken. 
 
yeah, doing real good - alone most of the day as Robin left this morning.  it is the first time in weeks - I am fine - I don't do anything stupid and keep the phone with me. 
 
Robin gave me buzz cut and a chance at a mohawk this morning - my hair was hurting, coming out already from the rads.   the warm shaver and his easy touch felt like a big relief.  So the wig my sister Jane and I found is enough like my short hair I am not wigging out about it.....
 
2 more doses to go - I am using this time to get real organized. 
 
Be sweet to yourselves - Mary
 

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Dear friend, theory is all grey, and the golden tree of life is green. - Goethe
nosurrender

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Reply with quote  #59 
The dishy parker! Oooh!
I am glad you got the cut- that hair hurting is the worst feeling.
So now you are down to just one more, right?
You are amazing!
Love to you my friend!
g


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csp

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Reply with quote  #60 
 Mary I wonder if you are like me , when there are things that seem out of my control I find it very soothing on my psyche
to take control of what I can, like organization. Of course I have control issues lol.

Just wanted to stop by with a big WOO HOO only 2 now right?

Hgs,
Carrie

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courage does not always roar. sometimes courage is the quiet voice at the end of the day
saying.. i will try again tomorrow.
~maryanne radmacher
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