As I Was Saying...

Andrea Barnett Budin · 09-11-2008, 05:04 PM

Just thought I should move this post to a new thread, to hopefully inspire some who don't know me or my story (from COME MEET THE NEW ME thread).

I will be eternally grateful to Dennis Slamon, who isolated the HEr2 gene, and helped develop Herceptin for Genentech (along w/Dr. Mark Pegram and others). They have surely saved my life!!

Throughout the years, i would be talking to friends and often somehow mention I had just had chemo. What do you mean?, they"d ask incredulously. You're still on that stuff!? How long has it been? I began in '98. They'd stare off, somewhat stunned by the length of time.

Then, they'd ask, How much longer do you have to stay on this chemo? I would pause, gathering their full attention, and say as calmly as I could, trying to relate my complete acceptance -- FOREVER... They'd each respond shaking their heads, looking away into space and repeating -- forever... Disbelief of course.

You see when I metastasized in '98, I was told grimly (by my New York onc who knew Paul and me well, since this bc thing began for me in '95) -- "What you have is inoperable, incurable... And you will be on long term chemotherapy for the rest of your life". I had 4th stage breast cancer. I was utterly demoralized.

But, with great effort and determination and as much grace as I could summon, I doggedly moved forward w/faith in my ability to SURVIVE. Of course, God, the Universe, my docs, nurses, Herceptin, even Taxotere, my supplements and wonderful *nut onc*, my meditation and guided imagery all countered in. And, as it turned out, the long term chemo was the *easy* chemo, the new monoclonal antibody that was tailor-made to correct this aggressive, malfunctioning gene. Just like a smart bomb!

It was then, for me, that I found that along with my terror (of cancer and real possibility of death) came a glorious reverence for Life and humble gratitude for my many blessings. This had all been somewhat obscured through the previous years. Not taken for granted, but underappreciated, if you will.

As fear and awe converged within me, a feeling of being more alive than ever before filled me up. I experienced a feeling of blissful Being engulfing me. It radiates from me I am told.

Now, I find myself digging to be brave once again. I've cut that umbilical cord, Steph -- you are so right. I wasn't ready till just recently. I am 3 yrs ahead of you. There is no right or wrong decision here. I am going with my gut, my Inner Voice, my instincts and the wisdom of extraordinary onc. There is no guarantee that comes with this choice. But I feel more confident and jubilant than I do fearful. I know I can always return to H, if (God forbid a gezillion times over) anything were to indicate such a need. I have not burned any bridges. Just shut the door ever so gently...

As always, I'm striving to focus my energy and my thoughts on the gift of each day, not on the possible loss of tomorrow. I am still talking to my body, and commanding it to stay well and healthy. NO MORE CANCER. I am clear on that.

I BELIEVE. Every thought is like a prayer. Every prayer is a potential miracle.

And I KNOW that every thought or whisper of my mind is in effect a direct command to my body. My body works with my mind, and KNOWS it is it's function to follow orders. So I am truly diligent about what I choose to dwell on each day.

Thank you all for *getting it* and posting your thoughts in COME MEET THE NEW ME. My nurses were a bit frightened when I told them, I kind of detected, but they support my decision absolutely! And -- I feel fantastic! I AM HAVING THE TIME OF MY LIFE!

I called my NY onc to fill him in and update him. He said firmly that he was delighted to hear from me and feels that I am going to do very well with my new plan. He is naturally gathering as much info on long term H users for his other patients. He believes I can do this.

I confided my thought process over this with Pinkie, to garner her valuable input. I was showered with flowers (all the way down here in Florida from up there in Canuckland where she lives) on THE FIRST DAY OF THE REST OF MY LIFE. She so understood that THIS IS THE TIME OF MY LIFE!!! And, I know all of you can appreciate the gravity of my new Plan as well. Just had to share with all you fabulous people I have come to call more than Friends... Your words and sentiments have touched my heart profoundly. Thank you, thank you...

Andi

Kim in DC · 09-11-2008, 05:38 PM

First of all I love the new pic!!!! Again, I will say your words are always an inspiration. From time to time I go to other BC sites and the ladies there are just a little too doom and gloom. I am reminded by your posts that our thoughts help create our destiny and I choose to be positive. Reading your posts give me hope!

Kim

harrie · 09-12-2008, 12:22 AM

Andi, with your thought process, your lovingkindess, and your zest for life, there is absolutely no way you can make a "wrong" decision. I am so happy for you and wish you all the best as you embark on your New Plan!!
Also, I just LOVE your new pic!! You are just so pretty!! Your eyes and your smile just radiate love, kindness, peace and joy.
Your Friend,
Maryanne

Ceesun · 09-12-2008, 09:28 AM

You are a treasure Andi, wish I could have the honor to meet you. Ceesun

naturaleigh · 09-12-2008, 09:46 AM

I love your new picture. You are soooo BEAUTIFUL!!! You have the most radiant smile!!

So what are you going to do on your first "day off"?? I know for going to chemo for 1 1/2 yrs it became a habit. A habit that did not take long to break though!!

Please don't forget us here at HER2 Support while you are enjoying your new freedom!!

Jackie07 · 09-12-2008, 09:48 AM

Ditto to all four witnesses above. Andi, we love your words as well as your 'deeds'. And that beautiful new picture! Is 'sensational' the right word?

StephN · 09-12-2008, 11:05 AM

Dear Andi -

An incident yesterday makes your post "right on" for me. The part about people's reaction when you tell them you have to take "cancer treatment" (those are the words I use) FOREVER because there is no cure for what you have.

The shocked and dazed look comes for a couple of reasons. First of all, we do not LOOK like we are eternally bald and wasting away. So they cannot equate what is in front of their eyes with their PERCEPTION of what "cancer treatment" means, and how a cancer patient should look.

Their perception takes them to the next thought which usually is that there is NO way THEY could go to a cancer center and get drugs for the rest of their life. And how did THIS person manage to do that so freaking long?!?!

Our wonderful Herceptin has done this for us - made people discombobulate when they meet cancer patients who are surviving with Herceptin, or an array of other drugs, who all look as well as or BETTER than any random non-patient you could pick out of the grocery store line.

My experience yesterday was meeting a woman who is a TEN YEAR survivor of lung cancer. She just could hardly believe that I am still in treatment. Based on her experience she said any medical procedures send shivers down her spine. She has not kept up with the new advances and has stayed far away from cancer groups as Lung Cancer did not have any support groups when she needed one. All anyone in her hospital would say is that "we don't put the time or energy into a support group for lung cancer since you are all going to die soon anyway." Shame on them! This lady even offered to start one.

I told her "the times, they are a-changin." And after she finally understood me a little better we had a hearty 'survivor' handshake. And I proceeded on to the local Farmer's Market to load up my fridge.

Andrea Barnett Budin · 09-12-2008, 11:30 AM

Yes, Steph, You have put your finger on it. That explains why those people often say to me, YOU LOOK FANTASTIC. (Compared to a dead person???) LOL. Cause they can't believe I am *sick*, not withering away, grey and bald. Then, strangers especially, often say, GOD BLESS YOU! And I get a giant hug. We are all awed by what the human Spirit is capable of. Kind of like watching the Olympics. The agony and the ecstasy.

For the record, I have a friend who is a 4 yr lung cancer SURVIVOR, in Chicago. She has been on chemo all the while, and remains STABLE. Never a smoker, BTW. They gave her body a 4 mnth break and have halved the dosage for the last yr. I know a man who is tx by my wonderful onc returnee who is a lung survivor for over 5 yrs. Richard Bloch (of H & R Bloch) was told to put his affairs in order, that he had 3 mnths to live. I know that 25 yrs later he was still defying that sentence. He went on major hardcore chemo for 2 yrs, meditated, used guided imagery and the love he had for (and received from) his wife to overcome all. I have read 2 of his bks chronicling this.

I know that in Chicago, where Bloch also hailed from, my friend is active in -- LUNGEVITY. Get it? A play on longevity... Yes, Steph, indeed, things they are a changin'!!!

Cancer is a chronic condition that can be managed. We are getting closer everyday to a cautious cure...

Let's all say a prayer for Texas and vicinity. Ike will soon be upon them...

Andi

Mary Jo · 09-12-2008, 12:22 PM

I, too, wanted to chime in to say your new pic is great. Lookin' good sister.

Also thanks for the reminder to us to pray for those folks in TX.

Mary Jo

fullofbeans · 09-15-2008, 04:29 PM

Dear Andy I do beleive that the mind and body are well connected and that a happy mind is the basis of an healing/strong body..

But then again I have also noticed that truck loads of taxotere and H have been a common factor to the long term stage 4 survivor on this site..;-)

Long term stage 4 are offering much hope in my life so thank you for posting your always encouraging messages. My next scan is in a couple of weeks and I am feeling so vulnerable and scared...my life is so good now and I want it to continue just as it is; in health..

lots of love

harrie · 09-15-2008, 05:39 PM

Acceptance does not mean inaction.
We may need to respond, strongly at times.

From a peaceful center
we can respond instead of react.
Unconscious reactions create problems.
Considered responses bring peace.
With a peaceful heart
whatever happens can be met
with wisdom.
Peace is not weak;
it is unshakeable.

Jack Kornfield

fullofbeans · 09-16-2008, 04:02 PM

I agree Harrie nice post.

Acceptance is courageous. The way I describe my situation is that my head knows the stats (accept) but my heart knows better (hope and faith).

Jean · 09-16-2008, 06:46 PM

What a beautiful thread!
Thank you Andi for always being a generous lady and sister to all of us. Yes it is amazing that you can shock
people by looking so beautiful (inside and out) while
having cancer treatment.

Of course I am 100% with you in spirit dear one!

Steph, I just the fact that you can relate to another about the change that we are now seeing...and then
display that fact by finishing your conversation and like the brave strong woman you are .....go food shopping....you placed a huge smile on my face.

Harrie...that is a such a true statment...it takes courage to embrace what is....and I too believe that acceptance allows us to keep our minds open to think clearly and react with strong energy...fear is draining....

Fullofbeans....wishing you the very best with your scans.

harrie · 09-16-2008, 10:56 PM

Fullofbeans, that is so right. Never underestimate the value and and significance of the heart.

Andrea Barnett Budin · 09-18-2008, 05:40 PM

WHAT I'VE LEARNED SINCE BEING DX IN '95 AND THEN BEING HIT IN THE HEAD AGAIN IN '98... HOW I FOUND THE TRUE ME...

THE TRUE ME

I AM MY BREATH.
I AM THE SPACE BETWEEN MY THOUGHTS.
I AM THE AWARENESS OF MY THOUGHTS.
I AM THE ONE BEYOND MY THOUGHTS.

I AM ALWAYS IN THE PRESENT MOMENT,
ONE WITH WHAT IS,
YET READY TO GUIDE MY DESIRED DESTINY
TO COME TO ME...

I AM EMPOWERED.
WITH THE POWER OF THE ENERGY OF MY THOUGHTS, WHICH ARE SENSED AND RESPONDED TO -- IN KIND
BY THE INFINITE ENERGY FIELD OF THE UNIVERSE.

I KNOW THAT MY BODY FOLLOWS THE COMMANDS OF
MY MIND -- INCLUDING IT'S PONDERINGS, PRAYERS, EVEN WHISPERS
AND, OF COURSE, MY

CONSCIOUSY AUTHORED INSTRUCTIONS.

I DO NOT HAVE A SOUL.
I AM A SOUL! HOW AWESOME!!

I AM A SOUL, WITH A MIND... AND A BODY...

I AM ETERNAL AND FILLED WITH THE SACRED ENERGY OF MY SOURCE.

I AM NOT THE VOICE IN MY HEAD.
I AM THE ONE BEHIND MY THOUGHTS.

THE WITNESS.

THE AWARENESS OF MY THOUGHTS.

I FEEL SO BLESSED...

Andi

harrie · 09-18-2008, 11:31 PM

Andi, I like how you listed, in priority,...soul - mind - body.

Andi, what do you think happpens to one's soul after the body goes?

Love, Maryanne

Andrea Barnett Budin · 09-20-2008, 10:58 AM

Well, here's what I think...

We are Beings of energy. Energy never dies. The body will wither and die, along w/our minds, but our Spirit is eternal.

One's Spirit transforms and reforms at the point of death. It *passes on* home, to the Spiritual Realm. Death is not the end of our story...

Andi

Andrea Barnett Budin · 09-25-2008, 10:33 AM

Well this last topic sure seems to be a conversation stopper.

Do you guys think you have a Soul?

If you do, what do you think it's purpose is?

Andi

dlaxague · 09-25-2008, 09:44 PM

Andi said: "Well this last topic sure seems to be a conversation stopper."

Laughing! I didn't see it or I would have conversed sooner. Sometimes it's hard to keep up with so many conversations.

Yes, I believe absolutely that we are soul, although there are many words and ways to express that. Soul-synonyms, let's say. Oneness, God, essence, center, heart, light, Christ, Buddha, Allah, etc. All the same to me. We are that. Part of the one yet unique at the same time.

Our bodies hold us while we are here, and then something else happens, but as for details of what happens when our bodies die - I have no idea except that it's good. I have a deep certainty that it's good, and safe. I don't really feel a need to know exactly what happens, so I have no specific ideas about who/what/where/how. I just trust. I honor others who know the details. I am quite sure that for them, their details are correct, and important to know.

Are soul/mind/body connected? Oh yes. Wonderfully so. Can one think cancer out of a body, or keep it away by having the right thoughts? That's where we (you Andi, and me) part ways - I do not believe that this is possible. I believe that my spiritual energy and explorations are much better spent in appreciation and connection with other souls because it deepens my appreciation and connection with other souls - not because it controls the behavior of cancer. I do what I can to nurture both soul and body but my main motive in that is not to control cancer, it's to live this life as fully as I can manage.

Since I have not had a recurrence, I guess it would be tempting to think that I might have overcome cancer because of something I did. But I do not believe that - not at all. I think that it's a crap shoot. We can improve the odds a bit of course, and that small bit of control is somewhat comforting. Our treatment options/choices and our lifestyle choices may give us just a bit better odds. But mostly it gives us the ILLUSION of control, which we humans (and our egos) do so like (smile).

Andi, for every person you cite who is living long past when they were expected to, I can cite another person who has died. Wonderful, strong, positive, loving, centered people who were swept away quickly, or who lived long with cancer but whose bodies were overtaken in the end. They ate the best foods and they thought the best thoughts and they were filled with love and joy. I smile to see them, in my memories. But they died. They lost the cancer crap shoot (but won in many other categories). On their behalf, I'm a little sensitive and touchy when I hear anyone implying that attitude or thoughts can change cancer behavior.

Because if you follow the logic thru - that if one is positive, and strong-willed, and in touch with her inner self, one can beat cancer, then the other side of that logic says that those who died of cancer weren't strong enough, or good enough, or perhaps allowed too many weak or negative thoughts. And that's where you lose me, on behalf of those wonderful people who have passed on from this world.

Have you ever spent time with someone who was dying and who had believed with all her heart that she could beat her cancer with the right lifestyle and the right thoughts? I have, and even though it was a rather peripheral experience on my part, it has SO colored my stance on this. No one should die thinking that they were not strong enough or did not try hard enough. We all do the very best that we can. The measure of our best IS NOT whether we live or die. The measure is how we live in this moment right now, with as much love and integrity as we can muster in that given moment.

I like the book "The Four Agreements" by Don Miguel Ruiz. One of the agreements is "always do your best". Simple enough, if somewhat daunting. But then he softens it and makes it real - "your best will change from moment to moment". Ahhh, sigh of comfort. We can all do that. We all do EXACTLY that, every day. And that's enough.

Andi, I think that you can read my point of view without hearing it as any kind of criticism or attack on your way of living. I honor your wonderful spirit and enthusiasm. I am glad for you - that you have found such peace. And I'm grateful for almost your every word on this list. But when you say something like "I am still talking to my body, and commanding it to stay well and healthy. NO MORE CANCER."

That's where we part understanding. I don't want some vulnerable soul to read those words and take on the weight of believing that their every thought and action will impact their cancer. I know that for you, this belief brings only healing and peace, and that is fine. For you. But not for everyone.

Love,
Debbie Laxague (okay everyone, jump in here - this is a great thread and there are no wrong thoughts)

harrie · 09-25-2008, 10:53 PM

Yes, Andi, I most certainly do have a soul.
I also refer to my soul as my Self (with a capital S). It is the essence of who I am and the purest part of my self.

My Self is NOT defined by my personality, my profession, how much money I may or may not have, any diseases or good fortune.
My Self (soul) is my core. It is an energy and is neither created nor destroyed.

The awareness of my Self can be dulled by the thoughts in my mind, and issues from the past.

My Self only manifests itself for the present moment. It is where the purest of joy can eminate.