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