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Old 06-08-2007, 08:48 AM   #1
saleboat
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Hello Andi,

It is my firm belief that one's response to treatment is based on poorly understood genetic quirks. If it makes you feel good to think that your fabulous resonse to treatment is because of your own free will, well that's your take on the world. I think it is a little heartless to broadcast it to women who aren't so lucky, but I guess that makes me a cynic, right?

I know we'd all like to think that we have some control over cancer, and there are many ways that 'we' try to gain it...thinking warm fuzzy thoughts, taking supplements, praying to our God.

Me, I'm just hoping that I have the right genetic quirk that equals a good response to all the poison I've consumed in this fight.

And I'm wishing everyone peace, strength and courage in their battle.

Jen
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dx 4/05 @ 34 y.o.
Stage IIIC, ER+ (90%)/PR+ (95%)/HER2+ (IHC 3+)
lumpectomy-- 2.5 cm 15+/37 nodes
(IVF in between surgery and chemo)
tx dd A/C, followed by dd Taxol & Herceptin
30 rads (or was it 35?)
Finished Herceptin on 7/24/06
Tamox
livingcured.blogspot.com

"Keep your face to the sunshine and you cannot see the shadow." -- Helen Keller
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Old 06-08-2007, 09:37 AM   #2
Andrea Barnett Budin
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Wink Vicki -- I Feel Your Applause And Loving Energy

Thanks so much for sharing your experience. That takes courage, I know. I too was always seen w/a smile on my face, happy serenity beaming from me. I loved Life and people and the world. But deep inside I too was lost and groping.

My readings say that unhealed, unresolved emotions are reflected in our genetically weakest area. Some get migraines, some get stomach issues, etc. Some have been eating the wrong foods for their body to perform at peak level, unbeknownst to them (or they'd surely unequivocally alter that pattern). Some eat whatever they want, much junk food plus smoke and don't get sick till they are in their 90s. Its all fascinating and confusing, for us and the professionals. But we do the best we can. I send you my love and prayers and thank you heartily for yours. I have written your beautiful sentence down -- "IN THE VERY BLACKNESS OF THE NIGHT A LISGHT SO BRIGHT AND WARM COVER ME WITH BLANKETS OF LOVE". What a remarkable and radiant Soul you are! It is an honor to know you. Stay in touch, please. Sending loving, healing energy your to help in your struggle to be and stay a Survivor.

BTW -- I admire ev woman fighting this brave fight that calls upon ev shred of strength and grace we can muster -- whether they win or lose. I applaud them, admire them, grieve for them and know they did their very best. Big hugs... ANDI
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 06-08-2007, 10:08 AM   #3
Andrea Barnett Budin
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Wink Adriania

I love your Spirit! You encapsulate what I am trying to transmit. You have the recipe down. I never asked why me. I didn't even cry. (At least not the 1st go round, the met stunned me for a while thinking -- I'M DYING. It's incurable, inoperable and I will be on long term chemotherapy for the rest of my life, said my onc slowly and w/obvious sadness and pain. Those words rang in my head. I couldn't speak to anyone. I was processing the info. Went for 4 opin. 1 onc said incurable, ca is incurable, it is a chronic disease, but we can manage it, get you in to remission. Inoperable? You're better off without the surg. It'll weaken you to fight the side effects of the chemo. Longterm chemo -- there are new kinder gentler chemos you can take. And if they don't work, we've got doz more. You are healthy. I laughed. Aside frm the ca I was healthy. You have a great attitude, a great support team (husb, dghtrs, friends) -- you'll do fine! I embraced that attitude, after thinking I'd just heard the worst possible words from my 1st onc (who I still see and love). He has 3 dghtrs, he'd known me for 3 yrs, was shaken. I forgive him. He is a good man and a great onc.

But his 1st words sounded like something you hear in soap opera. They were the worst words you could imagine hearing. A death sentence. I'd been on chemo (Adria CMF) 8 mnths of that, and the lingering effects for so long after finishing that -- that's a way to spend the rest of your life. But then came Herceptin. I can do this. Now ev 3 wks (triple dose). It's a walk in the park. Many tests to keep on top of all body parts, annoying, but ev day I enjoy the heck out of it and spend much time thinking of being loving and grateful.

I sit around full of anger and bitterness is self-defeating. And sure I have my moments of fear and worry and feeling overwhelmed, but I scrabble back up the mountain and get my footing again, because I know that's what I must do to keep on keeping on.

I HAVE NEVER THOUGHT OF CHEMO AS "POISON". It is the best the med prof has to offer us today. One day it will be viewed as primitive, to be sure. But for now -- it is our lifeline. It pulls me through the rough waters. I hold my head high and endure the drug that is out to annihilate ev malig cell in my body. I try to help through "guided imagery" which some teach. Thoughts are energy. You are energy. Even the visions we have are energy. They are emitted by us and felt by others AND they are sensed by the Universe which responds by sending us LIKE ENERGY. It's some Cosmic Law, as sure as gravity. We couldn't see bacteria before the microscope but many believed they existed. And, besides, "thinking" loving, joyful, compassionate, grateful thoughts(for our suddenly visible multitude of blessings) -- if nothing else -- HOW WE WILL "FEEL" ALL DAY.

Please ladies, do not dwell on feeling embittered, victimized, forced to succumb to poisoning ourselves -- you will feel miserable as a result, at the very least. Don't do that to yourself, please! You deserve better than that. And maybe it counters in to a degree in healing (as they have found laughter and social contact do). Ever listen to a 100 yr old person explain why they think they've lived so long. They've mourned many at their age, but found their way back to happiness. They are full of laughter and humor.

When I had my (always dreaded) mastec, I began to oddly think -- when I put on a double breasted jacket, is it still double breasted? Can I still do the breast stroke in the pool? It was weird, but it made me laugh, in the face of my worst nightmare ever, losing a breast AND having ca AND having to have 8 mnths of chemo. I was shocked to find when I went for my 1st mammog that I was unilateral. I got a bargain rate. Oh, great. I thought of my reconst tram flap breast as a breast. True, made out of stomach parts, but they were my stomach parts. I came home and told Paul. I said does that mean if I get ca in my left breast, I'll have stomach ca? We both laughed. Keep smiling. Being in the 1% club doesn't make me better than anyone else. I want every one of you to join me! I'm doing my best to suggest ways to get there. UCLA (through Pegram and Slamon) did a 1 yr study of longterm Survivors -- to try and figure out what makes them diff. I had hrs long interviews 3 X over the yr. I filled out many pgs of questionnaires asking PSYCHOLOGICAL questions. Rating on a scale of 1 to 5 if most days you feel things like: sadness, fear, anger, etc. Then there were essays. And 3X a day swabs all 3 X throughout the yr -- to check your seratonin levels. Did you drink alcohol today? Do you smoke? What pills did you take and what dosages and why do you take them. My 2 doz supplements were listed, along w/my prescrip drgs. Did you exercise today? Is this typical, unusual, etc. Have you had caffeine today? In depth study. Looking for answers predominantly outside the lab, beyond genes. I was honored to take the time to participate. I want the 1% to be the 90 something club! I want YOU to join. Sending much love your way... ANDI
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 06-08-2007, 11:30 AM   #4
Andrea Barnett Budin
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Not One Of Would Purposely Create Ca

But understanding, and becoming aware of, the nature of the psychosomatic process, is more than edifying. It is empowering. We can't help what occured for whatever reason. But we can help with knowledge and awareness of the power of our thoughts -- to our great benefit! That is the point.

I lived most of my life on Long Island where the predominance of bc is the worst in the entire country. They wonder -- is the something in the water, in the pesticides (my house was built on a one time potato field) as were many others. Dix Hills was largely farmland. North Shore Hosp and many other agencies are investigating these and other possibilities for well over a decade, w/still now specifid conclusions. There is nothing I could do but filter my water, watch what I ate (low fats and carbs and red meat) and pray from time to time. Of course, I assumed bc, though dreaded beyond words and congnizant of the awful statistics, no matter where you lived, would happen -- to someone else. You never truly imagine it, or any great tragedy could happen to you. YOUR house wouldn't burn down. You would never personally experience kidnapping or the like.

But as I was living with a smile on my face, a genuine expression of my Spirit, I felt clinically depressed, struggling to make sense of my traumatic childhood and somehow fix it. I was wounded but didn't get that. I was angry, blaming, resentful, unforgiving, mad as hell. But bc helped lead me to the answers to finding joy and peace.

Even as I discovered that my thoughts were creating my agonizing, immobilizing back pain -- I never felt guilty! I had no idea there could be such a connection. Even w/structural malformation and visible MRI disc impingement. I felt no shame or blame there. WHAT I FELT IMMEDIATELY WAS WOW -- WE HAVE BEEN GRANTED SO MUCH POWER! My head reeled with the possible applications of this Secret of the Universe.

Dr. Sarno told me that studies had been done on people w/the same narrowing of the spine (which is natural w/age) and w/bulging, intruding discs -- WHO HAD "NO" PAIN. Really? He cited these various studies w/specificity. Amazing. Okay my malfunction and bulging L4 and 5, etc. doesn't necessarily cause the pain. So where is it coming from?

The pain decreases when we allow ourselves to more fully feel our sadness or grief or anger, etc., Sarno explained. I tended to suppress my outrage, as I'd learned to do as a child of a father who could not tolerate seeing me cry or look sad. In fact, studies show that if you smile, you begin to release the same chemicals that come from naturally smiling. I had adopted a natural, perpetual smile as it made me feel better and made others respond so wonderfully. Smiling, and laughter, increase our sense of well-being. So I use my sense of humor at all times, in the oddest of places, it just pops up. I do not like movies w/violence (which are truly difficult to avoid these days), but seek movies that I can learn something from (Waitress) and that make me laugh (Little Miss Sunshine). We are all dysfunctional, in varying degrees. There is no NORMAL.

Watching my mother's long death, Alzheimer's, inability to speak, understand, read or write, play cards, have a conversation and then her paralysis as diff brain parts were dying off -- was indescribably painful for me. It began in the late '80s (her late 60s). Ihad round the clock nurses for her for as long as I could afford to. We had a hoya lift to transfer her from bed to wheelchair. I managed a mini hospital staff. I marketed for her. I paid her bills. I grieved for her. (I wrote her eulogy 5 yrs before she died, as I started to forget the person she was, first writing avid reader, up on everything, volunteer all her life. Then the words became sentences and they became paragraphs.) My mother would stare into space blankly. I was caring for the shell of my mother as best I could. I hired ambulettes to transport my mom to doc offices as the nurse and I could not manage this alone.

Paul and I searched for Geriatric Care facility. She was not a candidate for assisted living. We were on a waiting list, expecting the call any minute and knowing we had 24 hrs to move her in or we'd lose our spot. Ev time the phone rang my heart leapt. I had hr packed and ready. One the day she went into the home, I "decorated" her room as cheerily as I could w/items I'd bought and saved. I put up a bulletin board I had made at the frame stare and pics I collected of her as a child, a beautiful young woman, w/my father who was long gone, pics of me and my sister as children and present, and the grandkids, pics of her parents -- all to hopefully remind her and give her a sense of being surrounded by love. It hung on the wall facing my mom's bed. An added perk to this was that the nurses had a sudden knowing of the woman who was now a shell. She was such a beauty. Those pictures. Wow. I can see her. They would ask me who was who and then review this w/my mom in my absence. Sometimes she'd smile back.

But the toll that took on me (from the late 80s to 01) was beyond mammoth. I was dx in '95. I never told my own mother I had bc. She wouldn't understand and if she did, it would gravely upset her. There was nothing she could do, but I felt, how could such a profound event take place in my life and me never mention it to her. I'd discuss my dghtrs and husb and the events of the day, prattling on. Surely the psychological impact of that horrendous ordeal for her, and more for me to watch, as she seemed not to know, had to contrib to disarming my imm sys. Not my fault. Just life happening. No blame, no anger, no resentment.

But had I known of the potential physical toll of my emotional upheaval I would have been better armed, to vent more, to find a peaceful place midst the turmoil of it all. I had a thousand pounds on both my shoulders of responsibility. (My sister was having her own family problems and therefore I was The One, it all fell to me, as if I were an only child.) I wanted to call my brother! But I never had a brother!!

Waves of sadness swept through me. There is no hope for a person in my mother's position at that time. My prayers turned to pleading w/God to release her from this tragedy and let her go in peace to a better place. I prayed ev time I left my mom, unable to feed or bathe herself. I thought I was dealing w/it, but now in retrospect -- not so well. Packing up her apartment and disposing of all contents in one way or another was so painful. My dghtr Ali helped me w/the papers. I couldn't focus on what needed to be saved and what could be tossed.I was disposing of her belongings as if she had passed on, but she was still alive. I felt I was intruding, peeking into drawers and crannies.

Surely I am not a self-destructive person. Never thought such a thing. I have been a survivor since childhood. That is how I have always seen myself. I do not see you or any one who has ever faced this dasterdly disease as bringing it on themselves. That is absurd.

Let us all do as Adriana says. She is much like me in so many ways. Long time survivors who have no intention of doing otherwise. I don't believe we were just LUCKY. Nor does UCLA, or many places of prestigious med research done on our behalf. Let us all add our personal experiences and best guesses and share our readings with one another to better understand the bc conundrum and try to get a better handle on it.

Please, ladies, don't any one of you feel an iota of guilt, blame or shame. That is totally unfounded. We are all here unwillingly but here all the same. Let us put our heads together and offer our heartfelt thoughts. Let us network our collected info (beyond the med percentages). INSTEAD LET US STRIVE TO ALTER THOSE PERCENTAGES -- TO OUR ADVANTAGE!
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 06-08-2007, 01:22 PM   #5
Andrea Barnett Budin
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Wink Vicki, Irene And Believe 51

Bless your hearts. And your lives. Your words of understanding mean the world to me. That you get my intent loud and clear is wonderful. Your spirit jumps off the page and touches me profoundly. Thank you so much for your kindness and loving natues. I cherish them. Sending hugs and kisses... ANDI
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 06-08-2007, 02:28 PM   #6
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I read the original long message and all follow-up replies with a heavy heart. My life long philosophy is never to give advice on religion issues, since it is purely a personal choice. The theory that mind-set and physical illness could merge is a similar debatable topic and borderlines on religion. Therefore, I shall not give any comment on this issue.

I do sympathize with the author in regard to her difficult and long journey, from caring her mother to her own bc. To have strength to go through these difficulties took a great deal of perseverence and courage. Her use of determination provided the basic elements to heal the body and lift the spirit.

The most important issue here is the intent. I am sure the author meant no ill and she has repeatedly claimed her love for all of us. Her good will intent is enough for me and I sincerely wish all the best.
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Stage 1 dx Sept 05
ER/PR positive HER2 +++ Grade 3
Invasive carcinoma 1 cm, no node involvement
Mastec Sept 05
Annual scans all negative, Oct 06
Postmenopause. Arimidex only since Sept 06, bone or muscle ache after 3 month
Off Arimidex, change to Femara 1/12-07, ache stopped
Sept 07 all tests negative, pass 2 year mark
Feb 08 continue doing well.
Sep 09 four year NED still on Femara.
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Old 06-08-2007, 02:56 PM   #7
Andrea Barnett Budin
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Wink Ann

I appreciate your comments. I too do not discuss politics or religion as these are HOT TOPICS. I see Spirituality as beyond any one religion. We are all human beings worthy of dignity and respect. Actually I see us all as spiritual beings on a human journey. We are all bonded, regardless of religion, creed, ethnicity, etc. I see us all as one. And surely all bc patients are Soul Sisters, knowing beyond any one else's ability to grasp what this scary journey is all about and how it demands our constant vigilance. So the passionate reactions and the radiant glowing Spiritual responses were surprising. I have been counselling friends of friends who are sent to me for over a decade. Never had I recvd such negativity.

I appreciate your recognition of my ordeal w/my mother. I now see how enormously more stressed I was than I admitted to while persevering through her struggle which became mine of course. Then came the bc and from my reading, I see a correlation to compromising my own imm sys, unintentionally, and becoming ripe for bc. Not that I need a reason for getting bc. Because I have so very many wonderful reasons that came from the bc. That is what I choose to focus on. My Spiritual path was ignited, the lessons and messages and Secrets of Universe have illuminated my life. As one lovely lady on this board said earlier (which I knew for sure if it was Mary Anne) -- "In the very blackness of the night a light so bright and warm covers me with blankets of love". That, in the end, is what I wish for every "being" dx with ca. We can become BITTER or we can become BETTER. The choice is ours. The difference of one little letter makes all the difference in the world.

Wishing you all a safe journey through this unique fight. May you come out more than you were before, with expanded awareness and deeper meaning in all of Life. Much love always... ANDI

I app
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 06-08-2007, 01:20 PM   #8
vickie h
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Post Andi and Grace

Who could possibly feel that Andi was blaming anyone for their cancer. The anger I read in many of these messages, as well as guilt and unforgiveness astouds me, Which brings me back to what Andi was trying to say. No One intentionally created their cancer.....but unresolved issues, trauma, unforgiveness of others, blame, etc, as well as environmental issues, diet, etc do have a part in our cancer, just as chemo has had a part in resolving some or all of it. Please reach out to one another and love each other. Forgive those around you if you ask for forgiveness for your own acts. Don't ask for forgiveness if you can't forgive ( a message from God) And Grace, your message is filled with hope and a positive attitude. Railing against injustice is about the most positive thing I can think of......LOve to you all, Vickie
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Love and Hugs, Vickie

Life's not about waiting for the storm to pass,
It's about learning to dance in the rain.


Feb 04 IBC IIIC/IV er-/pr- her2+++
3/04 TCH X4
7/ 04 MRM 9/04 Taxol/herceptin wkly 1 yr 33X rads
11/04 skin mets 33x rads,10/05 Avast/Herc. 11 mos.
8/ 06 PET mets lymphs, neck
9/ 06 Navelbine/herceptin
11/ 06 PET NED
2/ 07 skin mets, 4/07 Xeloda, 5/07 add Tykerb
2/ 08 Tykerb failed. Doxil /Herceptin 6 months
8/08 PET skin mets, 8/08 Abraxane/Avastin
11/ 08 PET prog., skin mets
1/09 PET/CT progress, 1/09 Ixempra, 2/09 add Xeloda and low dose Naltrexone
2/09 off Ixempra/Xeloda
3/09 navelbine/herc/cytoxin 4/09 PET shows regress.7/09 start Topotecan. Failed.
8/09 extensive mets rgt brst, back and torso. starting Pazopanib clinical trial.
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Old 06-08-2007, 03:04 PM   #9
StephN
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Thumbs up The world is not flat

The brave explorers who took heart and sailed in crowded wooden boats onto wild and vast seas have always held a special fascination for me. Why would someone leave the comforts of their known land and set sail outside the known world? I was recently reading the life of St. Brendan, the Irish chronicalist of 1500 years ago. He and a small group of Christian monks made a small craft and it is said they actually made it across the Atlantic to America and BACK! Not once, but twice. This is well before Christopher Columbus.

Somehow he was called to take this voyage. He seems to have had no choice, nor did he even WANT a choice. His voyages were taken as a way to know God. This "voyaging" is how I have come to see my fight with my cancer. Many dragons and sea monsters have been encountered to tame along the way, but seem able to do this so far. They are near, but do not threaten.

An unseen hand seems to guide and comfort me, keeping the periodic freakouts to a minimum. Accepting this disease as another life partner has been key in my type of battle.

Perhaps this is my way of using my energy as a healing force, even though I may be a bit selfish with it, getting less involved in the social pressures and problems of our times.

Learning from all here how you fight (and, yes, die) has been a way of keeping me afloat. There is so much valuable input that includes and goes beyond our individual attitudes. Keep it coming ... "with Love, from me to you."

As one not ready to give up my ship, I enjoy the wisdom shared, both ancient and modern.
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.

MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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Old 07-14-2007, 01:37 PM   #10
Val Pfeiffer
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Andi--I really like your post (and I LOVE your photo--I just updated mine, but now I think I need to do another one that's more fun:-)

After reading this, I wanted to add the list of things that I felt then (at the time of diagnosis) and now and will in the future--because it reinforce it again for me, and because sharing ideas is what this board is all about:

1. There isn't anything I can do about the fact that I have been diagnosed with breast cancer. But I can choose my response to it.

2. There will always be someone out there who has a worse health situation than me. I can choose a pity party or I choose to live my life the best way possible.

3. I will continue to live my life by doing everything I have always done, unless it becomes impossible. I will continue to teach spin, because a high heart rate might give the Herceptin more "passes" through my body. I will continue to work because it keeps my brain active and happy.

4. While I have not gotten very upset about my situation, I need to understand that others close to me will grieve at different levels. They may expect me to behave in a certain way, or have certain needs, and when I don't match their expectations, I need to be understanding of their emotions.

5. Positive thinking is an effective weapon against fighting diseases like cancer. I can help my chemo drugs work their magic by mentally cheering them on.

6. Today is a great day because I'm alive. Others (like the guy I dated in high school and was engaged to right after high school who was instantly killed in a motor vehicle accident two years ago) don't get the chance to fight for their lives. I am lucky because I have been given that opportunity.

7. In general, people are generous, caring and totally cool. The people on this board, the people who brought meals when I was getting chemo and radiation, the people who sent emails to keep in touch--they are my heroes!


Val
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http://valleygirlvnp.blogspot.com/
Dx 11/04, Age 42, ER-/PR-, HER2+++
3 months weekly Herceptin, Taxol. Carboplatin
Significant tumor shrinkage
Mastectomy 3/05; Stage 3b, 9 cm tumor, 5/8+ nodes
3 more months weekly Herceptin, Taxol. Carboplatin
7/05 30 radiation treatments, IMRT planning approach
Started 1 year of Herceptin 9/05
9/06 Began quarterly triple doses Herceptin. Brain & breast MRIs semi annually.
* * * * * * * * * * * * * * * * * * * * * * * * * * *

6/08 Right breast, intraductal carcinoma, high nuclear grade associated with comedo necrosis; extensive diffusely involved the entire biopy specimen. ER+, PR-, Her2 unknown at this point, 07/08 mastectomy.
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Old 07-14-2007, 11:23 PM   #11
hutchibk
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Yes Val! Yes, yes, yes!! Thank you. You have put it down in affirmation form and the clarity of your writing and list is perfect.
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Brenda

NOV 2012 - 9 yr anniversary
JULY 2012 - 7 yr anniversary stage IV (of 50...)

Nov'03~ dX stage 2B
Dec'03~
Rt side mastectomy, Her2+, ER/PR+, 10 nodes out, one node positive
Jan'04~
Taxotere/Adria/Cytoxan x 6, NED, no Rads, Tamox. 1 year, Arimadex 3 mo., NED 14 mo.
Sept'05~
micro mets lungs/chest nodes/underarm node, Switched to Aromasin, T/C/H x 7, NED 6 months - Herceptin only
Aug'06~
micro mets chest nodes, & bone spot @ C3 neck, Added Taxol to Herceptin
Feb'07~ Genetic testing, BRCA 1&2 neg

Apr'07~
MRI - two 9mm brain mets & 5 punctates, new left chest met, & small increase of bone spot C3 neck, Stopped Aromasin
May'07~
Started Tykerb/Xeloda, no WBR for now
June'07~
MRI - stable brain mets, no new mets, 9mm spots less enhanced, CA15.3 down 45.5 to 9.3 in 10 wks, Ty/Xel working magic!
Aug'07~
MRI - brain mets shrunk half, NO NEW BRAIN METS!!, TMs stable @ 9.2
Oct'07~
PET/CT & MRI show NED
Apr'08~
scans still show NED in the head, small bone spot on right iliac crest (rear pelvic bone)
Sept'08~
MRI shows activity in brain mets, completed 5 fractions/5 consecutive days of IMRT to zap the pesky buggers
Oct'08~
dropped Xeloda, switched to tri-weekly Herceptin in combo with Tykerb, extend to tri-monthly Zometa infusion
Dec'08~
Brain MRI- 4 spots reduced to punctate size, large spot shrunk by 3mm, CT of torso clear/pelvis spot stable
June'09~
new 3-4mm left cerrebellar spot zapped with IMRT targeted rads
Sept'09~
new 6mm & 1 cm spots in pituitary/optic chiasm area. Rx= 25 days of 3D conformal fractionated targeted IMRT to the tumors.
Oct'09~
25 days of low dose 3D conformal fractionated targeted IMRT to the bone mets spot on rt. iliac crest that have been watching for 2 years. Added daily Aromasin back into treatment regimen.
Apr'10~ Brain MRI clear! But, see new small spot on adrenal gland. Change from Aromasin back to Tamoxifen.
June'10~ Tumor markers (CA15.3) dropped from 37 to 23 after one month on Tamoxifen. Continue to monitor adrenal gland spot. Remain on Tykerb/Herceptin/Tamoxifen.
Nov'10~ Radiate positive mediastinal node that was pressing on recurrent laryngeal nerve, causing paralyzed larynx and a funny voice.
Jan'11~ MRI shows possible activity or perhaps just scar tissue/necrotic increase on 3 previously treated brain spots and a pituitary spot. 5 days of IMRT on 4 spots.
Feb'11~ Enrolled in T-DM1 EAP in Denver, first treatment March 25, 2011.
Mar'11~ Finally started T-DM1 EAP in Denver at Rocky Mountain Cancer Center/Rose on Mar. 25... hallelujah.

"I would rather be anecdotally alive than statistically dead."
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Old 07-15-2007, 11:24 AM   #12
Andrea Barnett Budin
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Wink With All The Love Within My Soul

HEY VAL-- YOU'RE AN AMAZING GAL! Brenda, you rock. Flori and Kate -- I am standing by your side!

Love your Spirit. Love your LIST! When everything seems to be out of control (our *life* and our bodies) -- what we CAN control is our response to this horrid reality. I chose, as you, to be strong, brave and determined. To live with joy and serenity (knowing I was calling my desired destiny to me with my chosen attitude and my BELIEF). I wasn't to give up a single day to feeling sad or defeated!

From Day 2 -- I would give clear instructions to my body to HEAL, my hand over my malignant breast, sending focused energy specifically to the target area, full of love and intention, to assist all surgery and treatment to eradicate the villian.

When I was first dx, in July '95, Christopher Reeve had just suffered his terrible, paralyzing accident. He could not walk, feed himself, bathe himself, go to the bathroom himself or even breathe on his own. I IMMEDIATELY FELT *LUCKY*. Truly. (My mom was in a nursing home in much the same shape as Chris, w/the addl burden of not knowing who she was or who I was.) I totally felt -- 4th stage bc is scary beyond belief, but I am blessed. It could have been so much worse. I still feel this way.

If one person as survived the kind of met bc I have -- I can survive. YOU can survive. I cleave to that Knowing w/ea beautiful day I wake up alive.

My relationships, w/my husband, my daughters, my friends, my sister have become more deeply appreciated and enhanced by the reality of my battle w/cancer and mortality. Nothing is taken for granted. The truest of friends rose to the top. And even people I thought wouldn't even remember me, and total strangers, have shown such compassion and love, it never fails to blow me away. I get more hugs and I love yous than ever before. And I give more as well! I am more open. More understanding. More nurturing. More giving of myself. More awed by Life than ever before.

These people look like they're in pain, aware of my situation, and I smile gently and inform them that it could be so much worse and I have every Expectation of Surviving! After all these years, they are starting to believe me, and expect me to report back with STABLE after my scans and such. (I wanted to appease them, and I hungrily wanted their POSITIVE energy to go out into the Universe in my behalf.) We are all working (with the power of our thoughts and the power of our love) to boost the effects of the miraculous Vitamin H to keep me alive.

I thank God every day for the opportunity to fight for my life. VAL, you wondrous Spirit you -- your succinct words are treasures! I related to each and every one!!!!! You, and my Soul Sisters on this board, are MY HEROES! You never fail to amaze me with your ability to rally, each of you having fought your way through unimaginable setbacks. I love you all, with all my heart! I applaud you all! I bow to you all! (Women in *normal/civilian* life so often seem superficial, unaware of what a real problem is, or what it takes to get through a day.) LUCKY US. We've gleaned Life Lessons that enrich our experience here on Earth and have made us live with more Grace and resolve than we ever thought possible. We can't recapture the old normal, but if you think about it -- much of what we have gained could not have been achieved in the old normal way. We have grown, expanded our awareness and evolved in to a magnificent new level of consciousness. We've paid a dear price, but -- can't you see how fortunate we are? We've each reached down deep and found an incredible force that keeps us impelled forward and upward. Sending my love and admiration to your wonderful Warrior Women (especially the ones who were recently *re-upped*!). More power to you!
Andi
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'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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Old 07-15-2007, 12:27 PM   #13
lilyecuadorian
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A Teraphy

it really is for me like a terapy everytime a read your post Andy thank for your time posting and for all the good vibe and wishs for everyone on this group ....it put my spirit and my hope and better level ..
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Lily
Diag April/06 5 months after give birth my son Max
stage IV mets on liver (5 tumors) 38 year old,
her2+++ and ER+PR+ from32 nodes 4 positives
mastectomy right breast chemo before surgery herceptin/carboplatin/taxotere ,clear and surgery have radiation 20, `& then herceptin and tamoxifen
NED until Aug/07 body only then 'n June 04-06-07 .1 lesion of 1.6 cm on cerebellum ...novalis ,open sugery
5m.m brain met again novalis, 4mm.In the liver. Waiting 2 months now 3 tumors enroll on T-MCC trial start first infusion Nov 5/07 at Dec 17 scan show one tumor despair the 2nd and 3th diminish Doc said great results until March/08 ct scan show progression
03-05-08 start tykerb & xeloda
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Old 07-19-2007, 01:19 PM   #14
Andrea Barnett Budin
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Exclamation I Have Lived... One Day At A Time...

I have lived through the nausea. The tossing and turning, agitated sickness of it. Was that my voice I heard moaning? Thank God for Zofran. I have lived through the queasiness, to be distinguished from raging nausea. I have lived with the metallic taste. The dead taste buds. The I don't think I can eat any thing, but I'll try. I have to keep my engine fueled. I have to drink eight glasses of water a day. Every day. To keep myself hydrated. To help to flush out the toxins. I don't think I can get eight ounces of water down my throat. But, I'll try. Through the relentless waves of nausea. After the Zofran, I could think. I found the strength then to keep on rallying, determined in my struggle. I had this inexplicable but profound faith in my power to call my desired destiny to me. I kept putting one foot in front of the other. I believed I could activate my ability to self-heal. Through having my mind talk to my body with clear Intention and absolute, resolute Expectation. I kept reminding myself -- every thought is a prayer. Every prayer is a potential miracle. My Spirit could not be touched by the cancer. I would survive.

I have lived through months of feeling like I had the worst flu any one on the planet ever had. The deep throbbing aching in places I hadn't noticed existed in my body and everywhere, from my head to my toes. My legs were like rubber. They couldn't support me. I have lived through that weak-kneed, I think I may pass out, foggy-brained feeling. The cloudy head remains all these years later. I can't remember what *normal* is...

I have leaned on walls, on my husband's arm, against columns I managed to slip beside, the soap dish carved into the wall of the tiled shower, for support. To steady myself. So as not to collapse to the floor in a heap. I have lived through the deep muscle and tendon pain of each arm and leg, unable to find a comfortable place for myself, propping pillows, sitting, lying down, getting from chair to bed and back by impelling myself with my will to live. I tried to be brave. I felt the chills and then got caught in the feverish throes of sickness. I felt clammy and sicker than ever before. I was in a process, inching my way to be cured, thinking of being stable and as close to cured as I could possibly get.

I have lived through fourth stage breast cancer. How many stages are there?, people asked... I have lived through fourth stage metastatic breast cancer. You lost me, they say. What does *metastatic* mean? I have lived through fourth stage metastatic breast cancer. How do you take the chemotherapy? Is it a pill? The ones who did not know I prayed would never have to know. Why should they? Infusions, PET and CT scans, MUGA scans, ECHO cardiograms, port catheters, CMF, TCH, ILC and IDC and DCIS, lymph node involvement, sentinel nodes, Her2+, Decadron, Hemoglobin, creatin and urea bun blood numbers, pathologists, radiologists, stem cell transplants... You gain a whole new vocabulary when you are diagnosed with breast cancer. Your world is turned upside down and inside out. You add oncologists and breast surgeons to your telephone book. I didn't want to put their names there, but I had to. Then came the need for gastro-enterologists and with hot flashes soaring, an endocrinologist, in addition to the gynecologist and the cardiologist. Yesterday I was healthy. This isn't supposed to happen.

I have lived through five hour infusions, tethered to a pole. You can't focus but you bring two books hoping one will grab you. You can't read a paragraph and retain it's message, but you keep trying. When you have to go the bathroom, you take your pole and your infusion bag hanging from it and wheel it along with you. I watched one man who couldn't sit still in the chemo room walking back and forth down the long hallway. He had clumps of hair on the shoulders and back of his shirt. I was beside myself, agonizing for him. And for me. I have lived in chemo rooms in two states for over a decade. The nurses and staff all know me well. I'm a regular. I come in smiling. I leave grateful to be done.

I have lived through the friends I thought were friends who hid in the supermarket aisles, not wanting to face me. I have lived through the friends I thought were friends who didn't call because they didn't know what to say. I have lived to greet not just one grandchild, but five!!!!! And I have personally witnessed their birth into this world, their first breath taken, on three awesome occasions. (An hour behind with the other two.) All with open arms and an open heart. They are what Life is all about. I have lived to read the letter my ten year old granddaughter wrote to her next door neighbor who's thirty something husband had died last week. Little Josie found the words. They were her own. They came from her heart. She knew what to say.

I have lived with the extraordinary support of my husband, my two daughters, my son-in-law, family and *true* friends. Their loving energy has buoyed me and sustained me.

I live worrying that my port is safe, uninfected and working. I continue to live through the waiting for the results of the tests. I lived through holding my breath to see if the cancer had diminished or if it had spread. Now, I sit praying that I remain stable and have bought four more months of Life. I still live through the anxious anticipation for a week prior to the tests that will determine if I will live or die. I keep choosing Life, but I still become touched by tormenting thoughts in the days leading up to the big day. I live through that fear which is unlike any other. Am I in trouble or should I celebrate? Cancer is one hell of a roller coaster ride. I live concerned that if they have to use my thin frail veins that they will access one that functions without collapsing, rolling over and *blowing out*. I have lived through the uncertainty of whether I will be here next week. I feel bold making an appointment for a year from now, humbled as I write on my calendar. I still live with that preying thought, as all cancer Survivors must do, dare I hope... I have learned to take nothing for granted. And that is good. And that is bad. Each day we reach for Grace, wanting to live. And we are wise enough now to know we should not waste a single day in despair. We seek to rejoice in the day, with joy and serenity, knowing how precarious Life can be and cherishing the gift of each sunrise all the more. That is what I wish for all my sweet Soul Sisters, wonderful Women Warriors who are among the bravest Spirits to roam this earth... Andi
You are so very beautiful, you ladies I adore and admire with all my heart!
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Andi BB
'95 post-meno dx Invasive LOBULAR w/9cm tumor! YIKES + 2/21 nodes. Clear mammo 10 mnths earlier. Mastec/tram flap reconst/PORT/8 mnths chemo (4Adria/8CMF). Borderline ER/PR. Tamoxifen 2 yrs. Felt BLESSED. I could walk and talk, feed and bathe myself! I KNEW I would survive...

'98 -- multiple mets to liver. HER2+ 80%. ER/PR- Raging, highly aggressive tumors spreading fast. New PORT. 9 mnths Taxotere Fought fire w/fire! Pronounced in cautious remission 5/99. Taxotere weekly for 6 wks, 2 wks off -- for 9 mnths. TALK ABOUT GRUELING! (I believe they've altered that protocol since those days -- sure hope so!!)
+ good old Vit H wkly for 1st 3 yrs, then triple dosage ev 3 wks for 7 yrs more... The "easy" chemo, right?! Not a walk in the park, but not a freight train coming at 'ya either...

Added Herceptin Nov '98 (6 wks after FDA fast-tracked it for met bc). Stayed w/Vit H till July '08! Now I AM FREE! Humbly and eternally grateful for this life-saving drug! NED since '99 and planning on keeping it that way. To hell w/poor prognosis and nasty stats! STOPPED VIT H JULY '08...! REMAIN STABLE... Eternally grateful...Yes is a world & in this world of yes live (skillfully curled) all worlds ... (e e cummings) EVERY DAY I BEAT MY PREVIOUS RECORD FOR # OF CONSECUTIVE DAYS I'VE STAYED ALIVE. Smile KNOWING you too can be a miracle. Up to me and God now...
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