From cautious remission to freedom...

[Andrea Barnett Budin]

What does that mean? A number of people have asked me about this pronouncement given me (by 1 out of 5 oncologists) back in 1999. This is my answer.

I had 4th stage bc. Invasive lobular, 2 out of 21 nodes involved. In June of '95 the tumor in my breast (unseen in my last mammography in August of '94) was 9cm HUGE. I was told I would have to have a mastectomy just to remove the tumor! I had 4 Adriamycin and 8 CMF -- standard of care for circa '95. No breast tissue, no radiation. Had tram flap reconstruction at the same time as my mastectomy.

I intended to have this be the end of my bc experience. I was naive. Yet the medical profession does not offer follow up CT scans to first liners, so I now seriously question the wisdom of that tact. I did have a full panel of blood work done every 3 mnths.

All was perfectly normal -- except, my doc's voice squeaked out, Your liver enzymes are a little bit high. Nothing to worry about. OK. 3 mnths later, we have the same conversation. I now ask, What could this mean? It is so slightly elevated, probably nothing. It could be coming from your cholesterol medication... 3 mnths later -- SAME CONVERSATION. RED FLAG. I become alarmed.

I find myself asking for a sonogram. Well, I guess we could substantiate that. Okay, I'll order one for you. Sono radiologist looked and looked and looked and said, I'm sorry but I have to send you for a CT scan. I can't be sure what it is I am looking at it here. I sensed -- he knew.

CT showed multiple tumors throughout my liver! THANK GOD MY INNER VOICE TOLD ME TO MOVE QUICKLY or I suppose I could have discovered this too late... Too many to count!

Onc ordered biopsy. Malignant. Not good stats on people like me in this position I began reading.

I asked to be tested for the HER2 gene. Remember -- this is 1998. Herceptin was still in clinical trials. But my husband and I had keep up on all news in general and specifically re bc. They weren't routinely testing for this YET. I tested positive fo the HER2 gene. 80%. That's how the results came back, back then. This was August.

Herceptin was being denied people who were HER2+, even those who were given only mnths to live. It was still in trials (3rd stage). There was a LOTTERY SYSTEM, as there was not enough H to accommodate all who needed it. It was horrifying. BUT -- SEPTEMBER 28, 1998 -- just over a mnth after I became a metastatic breast canser patient, H was fast-tracked by the FDA and made available to all met bc patients! WOW... Some good news.

I was put on Taxotere in early September trying to catch my fast-growing tumors, which had grown since the first CT scan In Aug, only wks before. 8 wks later, CT scans showed Taxotere (the mean nasty freight train drug I'd chosen cause it was explained that it was the most aggressive tool in the medical profession's arsenal) was helping. Slight improvement.

In November of '98 we added Herceptin to my cocktail. My tumors continued to slowly but surely become smaller.

After 8 mnths, w/a pleural effusion and a peri-cardial effusion and an EF that was down to 50, I could barely speak, let alone walk. No more Taxotere for me.

But my main onc said, Not to worry, there is no reason not to believe that H alone can continue to do the job.

Now 2 of my 5 oncs (I like varied opinions in my team effort to kick canser's butt) asked me to bring in my CT scans for their radiologists to read. Yes, it's a whole lot of work, but the rewards are so worth the effort.

These 2 radiologists came up w/the SAME reading, at different hospitals, not knowing one another. And this varied from my main radiologist's view.

Each said: I am not sure that what I am looking at are tumors. They appear to be the dead remains of tumors, scar tissue, necrotic tissue, cyst-like, filled w/fluid.

What does this mean?, Paul and I asked the one in Westchester, NY. Well, I would say -- long pause -- you are in -- CAUTIOUS REMISSION... We were elated! We decided this *felt* right. I was winning my battle.

I remained on H for 10 yrs. Last July ('08), my main man, my fav onc, urged me to let go of my H habit. He felt certain the canser cells that were in my body in '98 were gone. I could be building up an immunity to the drug. I could always return to H if God forbid I needed to, and it would be even more effective. I was far enough out that I could give my body a break, and go live my life!

The freedom has been exhilarating. I remain vigilant, of course. I go ev 3 mnths for full bld work. I go ev 6 mnths for CT scans (chest/abd/pelv). I go annually (now) for a transvaginal pelv sono -- to be told my ovaries look beautiful. I go ev 2 yrs for a bone density test. I go annually for a diagnostic mammo and sono, cause lobular tends to hide. I do self-exams mnthly.

All this while meditating and trying to remain One With The Universe. Connected with my Spirit, which actively guides me. I listen for it's wisdom. I am open to it. I feel I AM A SOUL! And, so are YOU, BTW...

I take a gazillion supplements (in accordance w/my integrative medical oncologist/nutritional expert/guru). I have done this since the Fall of '98, even on chemo, when my onc says we most need to be on these aids in keeping our immune system boosted, strengthening our hearts, keeping free radicals at bay, blah, blah.

Despite all statistics to the contrary, I am still here. Still STABLE, in cautious remission, and so full of love, compassion and gratitude I am overflowing with these emotions. I love Life, each and every one of my special relationships, this entire board, strangers...

I have always believed in miraculous possibilities. I have studied the mindbody connection since the early '70s and have used the power of my thoughts to direct my body on a number of occasions, each time defying all odds! With a kidney stone deemed to large to pass w/o surgery. With a degenerative spinal disc disease that incapacitated me for yrs, until I found a physiatrist who awakened my awareness of the power of my thoughts! And, most importantly of course, with canser.

I offer this to any and all who are interested in the details of one of those canser stories. My spelling is intentionally meant to stick it to this insidious disease, in case you were wondering. I live with passionate determination, focused Intention and clear Expectation. I live AS IF. As if my desired destiny already exists, and is on its way to me. So I have lived with joy and serenity, even in the midst of my tx and the uncertainty that Canserland innately brings.

I long ago decided that canser is all about fear. If you can conquer the fear, you are on your way to healing and wellness. Let go of all negative emotions and move forward with that love, compassion, gratitude, tenacity and faith in your Personal Empowerment -- your God-given birthright. This is what I wish for all of you! With all my heart...

Andi

[Ceesun]

Mille fois merci....a thousand thank you's , Andi Ceesun

[MTome]

Thank you a million for this post. It is truly inspirational and I will keep it close and read it when fear does strike me.

God Bless you

MTome

[Believe51]

CT showed multiple tumors throughout my liver! THANK GOD MY INNER VOICE TOLD ME TO MOVE QUICKLY or I suppose I could have discovered this too late... Too many to count!

I am taking you to Dana Farber Wednesday, these words will repeat in my mind over and over. Dear Andi, as you know these were the same words used to describe Ed's brain.....Too many to count! We have claimed our lives back and not to give it up now. He refuses to die from this disease and reminds me constantly that he will not willing let cancer take him without a huge fight. I sometimes hear you when I listen to him and I find comfort in that. You know I have been 'naked' on this site for so long now, that I bare my soul on this journey for those to see. I feel that I need to share this, I know that is is to help as much as get help for me. Reading this post tonight made me cry because as you know, I share so many of your feelings. I thank you for writing this post, I feel like I was meant to see this before I went to DFCI with him. I think sometimes without focusing on the reality of his Stage IV, Her2+++, Male, Inflammatory breast cancer, but I do see the reality. I have never got over that like you have and hope God gives me the time to conquer that part. I thank you old Friend, for supplying me with more inspiration and hope to find the courage to beat down this beast when it has never looked this bad. Thank you for baring your naked soul, you are appreciated and loved so very much. I have missed your posts and am happy you are back with such frequency>>Believe51

[Andrea Barnett Budin]

I was just thinking... How well I remember my longing to be told YOU'RE CURED! Well, I've learned -- canser is a chronic condition. From time to time it flares up. You get it back under control and you return to being STABLE. I've gotten over wishing I could be cured.

Here's my new dream. To be told STABLE. STABLE. STABLE. (You're in *cautious remission* works for me too... tehe...) Sometimes I am told -- there is no evidence of disease. Same. Same. Same as last scans. All these pronouncements are precious. They infallibly evoke an instantaneous THANK YOU. I LOVE YOU, when my onc's nurse, Saint Susan, calls me w/my anticipated results. I make kissing sounds into the phone, overcome with gratitude and joy.

I have come to accept that what I have is *inoperable* and *incurable*. That's how it is with canser.

But I do not think of myself as having canser. I had canser. I am a bc Survivor! This is the mental image I carry with me.

In '98 they added "and you will be on long term chemotherapy for the rest of your life". Just devastating to hear and fathom.

I surely couldn't have existed long on Taxotere. 8 mnths was my absolute limit. But in '98 they didn't have the Herceptin effect reflected in the statistics. That drug (thank you Dr. Dennis Slamon!, my hero) changed everything!

And though I was at one point prepared to live the rest of my life on H -- it felt like a great deal to me -- here I am. I'm in a place I never even dared to dream of as a possibility.

So -- you all keep on dreaming BIG... The medical profession is out there working diligently and passionately, coming up w/new ways to overcome canser. You just have to find the perfect recipe tailor made for YOU. We are all different. Every ca is different. Every person's body reacts differently, even to the same drugs. Find YOUR magic bullet(s). Believe in your ability to find the right team of docs to lead you to there. Listen to your Inner Voice. Never give up. Never give in...

[StephN]

Hay Andi -
I have taken that "cautious remission" idea one step further now. I was once there ...

I say I am now in "PERMANENT remission!" Not quite the same as "cured" however, I like the syntax and the meaning!

"Remission without current treatment" is another way I have explained my newly won status. People seem to understand that phrase pretty well.

[R.B.]

You are a very kind and generous soul Andi

RB

[Andrea Barnett Budin]

Yes, Steph, I like the way you think.

It's kind of like when friends would be talking to me and then become aware that I said I just had or was having chemo. YOU'RE STILL ON THAT?????? How long has it been? And then the biggie -- how long do you have to stay on it (referring to my Herceptin).

I'd pause, to get their full attention, and then say with a smile and in a calm voice -- FOREVER...

Turns out, I lied. Here I be!

So I have dropped the cautious from remission and will now add your -- without current treatment. 11 mnths... Steph, hold my hand. We can do this... Walk with me...

[StephN]

Dear Andi -
I'm walking, I'm walking! Lace those fingers together and move in LOCK STEP.

We are on the same followup schedule with labs and scans, so let's make it a race in the future! I think we have a couple more with us, so the path may get a little crowded ... always room for more.

[Andrea Barnett Budin]

I agree, Steph. THE MORE THE MERRIER.

Is that a yellow brick road I see...? Let's go...

I promise I won't sing. I'll spare you that. I might hum though, if you don't mind.

I see us far into the future. Together. With a crowd...

[Jackie07]

Andi,

Just read your thread which is, as usual, great inspiration to other members on the board. Just wanted to add a little note here about the ultrasound and CT scan.

When I had my CT a month and half ago because of some discomfort of my upper abdominal area, it showed 'something'. I then got an ultrasound and the 'stuff' was not showing. I was not satisfied with my doctor's "It looked fine" statement, so I got on the Web and did some more digging. Turned out the stuff in my liver are hepatic hemangiomas which would not show in ultrasound and that's how they could be distinguished from 'cancer'.

What I am trying to say is that the ultrasound technician could be telling you the truth because the picture from the ultrasound had to be confirmed by the CT.

[AbbyDawg]

Andi,

I am sorry but I have to say it. Some of your posts are so offensive to me that I often stay away from this wonderful site. There is a time and place for everything but sometimes this is not the place. I know I'm not the only one who feels this way.

I wish so often I could be part of and be open on this board. But some of your posts keep me away. I do need the wisdom of this site. I am isolated enough, I wish I didn't have to feel isolated further by staying away from here.

AbbyDawg

[Pam P]

Andi -- read your posts on this thread & feel uplifted by your story and hope hope hope. I want to join you (& Steph ) skipping down this path. Help us all with the nuts and bolts of how you really get the confidence in the mind/body power and strength. I try to be there, but it's not yet core for me & I need to know how to open to the next level. I know its not about having it be on the periphery but central to all. Neither is it a magical 'cure all' to life, but helps to adjust and align whatever comes in life. And I do believe it also has life changing power for healing in our cells too.

Abby, I'm sorry this story of someone's good health makes you upset. But i'm really confused by why this is offensive to you. I know it's sometimes hard to hear of someone's good success when some of us are struggling with pain, progression, and the nastiness of this disease. Not that we begrudge them their good health, but maybe are envious of it 'why not me' why can't that be me too? Maybe post another thread about your feelings on this so you can express your thoughts more and we can dialog on them. I'd like to understand what you're thinking/feeling.

I so appreciate this site and honor that we each can write from our hearts about what is real for us.

[Ellie F]

Hi Abby
I, like Pam, am sorry you are upset by Andi's posts but not sure that I am clear why and wouldn't want to make the wrong assumption.Hope we can resolve this as isolation is the last thing any of us fighting this disease needs.

Andi,
I always find your posts uplifting as they make me feel that maybe,just maybe I might survive this disease long enough for a cure to be found,or at least successful long term maintenance that also gives good QOL.
Pam requested more detail about the factors you believe are important to your wellbeing and I hope you will share these with us.Your philosophy seems very much in line with that of Ian Gawler.He believes his recovery from metastatic osteosarcoma was largely due to the impact on his immune system of his inner calm which he achieved through meditation.
Ellie

[Andrea Barnett Budin]

There is only one YOU! There will never be another exactly like YOU. Yet, we are each so much the same. When I look at others, I see myself. When I look at my Sisters, I see a unique bond. We have experienced something exquisitely painful, physically, psychologically and emotionally.

Yes, all human Beings suffer in their lives, but being diagnosed with canser hurls us into a place that is frightening, disorienting, shaky and uncertain. We must summon uncommon courage and grace. We must open our hearts and our minds to sharing our experiences and learning from one another.

Richard H. Bloch (of H & R Bloch) wrote a book that had significant impact on me and my healing process. He was diagnosed with lung canser and given months to live. Told to put his affairs in order. He decided not to accept this prognosis. He went on highly aggressive chemotherapy for a full year. He learned to meditate and use guided imagery. He took the love he had for his wife, and hers for him and used it to fortify and motivate himself.

He lived for at least another 25 years. His book, offered free with a phone call CANCER, THERE IS HOPE rocked me. I understood that the purpose of his efforts to communicate what worked for him was full of generosity of Spirit. And I found each word of his book transforming!

He surely was not gloating about his success, he was reaching out to others who were suffering from canser and holding out ways he found to overcome. I immediately thanked him with all my heart.

Many helped me to survive. I went through my own hell getting here to be sure. As I climbed the stairs in my home, I was literally on all fours. As I drove to the doctor's office, I clutched the steering wheel and focused every ounce of strength I could muster to drive slowly, carefully and safely.

I had a pleural effusion, a peri-cardial effusion, deep agonizing muscle pains throughout my arms and my legs, neuropathy, sickening nausea and uncontrollable bowel issues. I could barely speak I was so weak. I shuffled as I walked and often tripped over my toes, unable to lift my feet to take each step. My tongue felt like it weighed 50 lbs. My comforter felt like it weighed 500 lbs. But I endured. And I made it through, despite all the odds to the contrary.

I decidedly tossed the statistics to the a heap out of sight. I read, 2 pages at a time, books full of the kind of inspiration it is my wholehearted intention to offer on this site.

I have learned to accept each minute as an unrepeatable miracle. I could have become embittered but I consciously chose to work to grow and expand my understanding of the Lessons that fell in my path. I see that I must live with an open heart and an open mind in order to blossom. I want to become more than I was yesterday. I offer a smile and loving energy to all I encounter. I listen. I share the things I have learned because it is my sincere intention to do as Richard Bloch did.

I am open and honest and bare my Soul and most people see that right off, and respond in the most wonderful ways. I believe we are here to serve, to help one another. That is what Life is all about.

Ram Dass is an author who grew beyond his LSD phase to become a guru and to cofound and build hospitals and work with refugees and prisoners. Over the years he reportedly played cello, golf and drove his MG. But since his stroke in the late '90s, it is others who must help him. He writes that he could think of himself as the guy who can't play cello or drive or work in India, that he could feel terribly sorry for himself. But, he writes, that is not who he is. Now he lives in a disabled body. Now this is who he is. Now, he still sees each moment as an unrepeatable miracle.

The Buddha has said that, There is only one time when it is essential to awaken. That time is now.

We can bemoan the past and feel apprehensive about the future, but only now can we act, with clarity and purpose, intention and expectation that go beyond what is easily predictable to some.

I will gladly share my own method of doing just this in another post. I am always available to give hope and inspiration to others. How could I not?

If what I say is of no interest to you, simply move to another thread. There's a wealth of information on this marvelous site to benefit from.

It truly gladdens my heart that so many post and/or PM me with their appreciation for my baring my Soul. It is why I continue to remain on this site. I only came upon this board AFTER. I quickly saw that though I did not derive the comfort and wisdom of the posts herein as I struggled to regain my footing and my life, it was my honor and indeed my duty to share my experience and all I was blessed to learn in my own journey.

Always with love,
Andi

[Shobha]

Andi,

Your posts are indeed an inspiration to me and fill me with hope. Like Ellie requested, I too would like to know if you will share with us the names of the supplements you take and any kind o diet restrictions that you are following.

I am still new on this journey and your insights are so very helpful.

hugs,
shobha

[Andrea Barnett Budin]

I was watching Bill Moyers and he had a Woman on who helped end a 14 yr war in Liberia. She was a Mother of 5. Sincere and passionate. She said she was tired of being afraid. Of waking to find whole families slaughters. Afraid to walk in the streets, because of all the rapes. Afraid for her Children.

She was tired of having no food for Herself or her Children. Her life was truly hell, and one day she decided not to be a victim anymore. She got angry. And though she was just a market Woman, shy and not capable of being a leader (or so she thought), she began to speak at her local church. She was unmarried and shunned by her society and thought she had no credibility, but she was tired of living in hell.

She began to invite others from other churches to join the Women of her church. She began to speak to all the Mothers in wartorn Liberia, who were also tired of war and fear, murder and rape and hunger.

An American Woman was in Liberia and began filming this Woman's journey, which has been now shown around the world, in all countries where there is a similar way of living midst horrors for over a decade. Other Women in other countries are beginning to see that they can make a difference. That non-violent resistance can be empowering.

Men who were waging these wars began to see themselves in a new light. They saw these Women as their Mothers and there actions touched them profoundly. I was riveted for an hour.

This market Woman, as she called herself (in her countries garb of headdress and robe) was asked by Bill what motivated her to carry her message on to others outside of her own country. She said, Because I feel their pain. I've been down this road and I am here to walk with them in their quest for survival. I want to help them unleash themselves.

Though peace did come to Liberia, and a Woman was elected President of that country, all stemming from one Woman's quest for peace, she feels there is more to be done. That the reason she was put on this earth is to help bring peace and awaken Women, and all People, to contribute to ending wars.

In my small way, I felt her words as my own. As a bc survivor, I feel my work is not done. Still, with each test, after all these years, I worry and pray for continued good results. I take no day for granted. Not one of my blessings for granted. Not one test of the many for granted. It remains a daily struggle, which I try to do with as much grace and love as possible.

I post on this site because I feel your pain, as that Liberian Woman said. I've been down this road. And I am here to walk with you in your quest for survival. I want to help. To tell you

-- DREAMS CAN BECOME THINGS OF THE PRESENT...

Andi

[AbbyDawg]

Perhaps then, because you feel so driven and passionate about your own sense of truth, you could have a website of your own. That way people who want to listen to you have a choice.

[flynny]

Thank you, thank you, thank you. Sometimes you just need someone else to put things in perspective! I have up and down days, but reading what you wrote really made me think twice. Life is a gift and you need to treat it with respect! Take time for yourself and your body. I have heard so many people tell me to meditate and I know it has worked for you! Thank you once again for the reality check.

[PinkGirl]

You know AndiBB, I was thinking .... when I was first dx. I met a lot of
women at my cancer centre and they were all very, very kind to me. I
really "felt" the sisterhood. But it didn't take that long before I was no
longer a newbie and I was doing the same kinds of things for the new
patients. I really feel an obligation to help ... if anyone asks me to talk
to a friend or e-mail someone, I gladly do it.

We have all brought ourselves along ... canser doesn't change who we
are. We are so very fortunate to have this group of diverse people to
learn from and lean on ... and you are a very, very special member of our group ... a bit of a kook ... but I mean that in a good way ... you know, sort of Shirley MacLeanish .... love you AndiBB xoxoxo (now everyone knows
we're still an item!)