This is a complex post, so please read to the end to make sure you get the whole story. It's actually an encouraging one, so bear with me as I explain. I am in for a journey, but it's not a bleak one.
First the practical updates. New England is being pelted with snow. There's a state of emergency and the accumulation is four feet deep in my yard. Understandably, I was not able to make it into Boston Monday for my in-person follow up and stitches removal. We're housebound, and I'm soaking up the homebody vibes, making Valentine's decorations instead of trying to save the world.
My neurosurgeon, a sparkling young world-class Harvard professor with a heart of gold and nerves of steel called us with the pathology results to finally give us details about the tumors removed from my brain. Oddly, every major surgery I've had has been performed by a woman - and they've all been over-the-top competent. This doctor trains neurologists in this procedure and also holds a PhD in physics from MIT. I could have searched the globe and not found a more skilled ally.
So the results? As "99% expected" (as they told us in advance), the two tumors are indeed metastases of the breast cancer.
Now you may think this is a bad thing (and I suppose mets are never a good thing), but there are major factors that distinguish my case from nearly every other case of metastatic brain cancer on the planet. Normally, by the time you get brain mets, you're riddled with cancer elsewhere, so it's often perceived as a sign of the end, but that is simply not the case with me. As you know if you have been following my cancer journey through my radio show or blog, I have taken a radically different approach to this scourge of a disease, characterized by lots of hands-on, practical, research-based intervention and management. We have not been idle.
At every turn and twist of this process, I have availed myself of state-of-the-art, cutting-edge treatments not available to the general public, clawing my way into a trial at Dana Farber for an extraordinarly effective drug called TDM-1 (now Kadcyla - see this cool video), and tetrathiomolybdate (TM) for copper depletion through Cornell. My husband has spent thousands of hours researching supplements and the latest research on systemic met prevention, and he lovingly brings me 25-40 supplement capsules a day, ranging from coreolus mushroom, holy basil, and curcumin, to ashwaganda, boswellia, and hawthorn. When chest wall radiation posed a threat to my heart, I sought out a novel approach that protected my heart completely, and was one of its pioneers at my radiation facility.
We have wrested the wheel out of the hands of people who would steer us down back roads more times than I can count, most recently by hiring a snowplow during a blizzard at 3:00 AM to drive me 50 miles to a world class neurosurgery unit for emergency surgery rather than go to a smaller local facility with fewer resources when the ambulance refused to drive me there during a state-wide weather travel ban.
We have become savvy, adept, well-informed, and powerful advocates for my health, as a result of our advanced Harvard degrees and training, our inexhaustable research skills, our faith in God, and our overwhelming desire to beat this disease and allow me to live many more years of productive life. Oh, and don't forget a big dose of tenacity on both our parts. My husband was a chess champion back in school, and it has been a thrill to watch the most brilliant mind I have ever known direct all those chess moves at my survival. He is a formidable opponent to this foe we both face.
That background should give a sense of how far from of the statistical norm I already am. But there's more. Usually, brain lesions are inoperable, due to the complex architecture of the brain, and cannot be removed. So managing them becomes an issue of trying to irradiate them into submission and hoping they do not grow. In my case, which is only true 15% of the time, both tumors could be reached and removed entirely, with no neurological damage to me whatsoever. Whatever was in my head is gone, gone, gone, and whatever margins around it might still hold traces of cancer are about to be nuked with 3-5 treatments of targeted radiation, which I welcome. So my brain will soon be cancer-free.
All of these things make me a statistical anomoly. The result of the care I have taken means I do not have cancer anywhere else in my body. My breast, bones, lungs and liver are all 100% clear, to the astonishment of every doctor that has confirmed this repeatedly by CT and PET scans. I had yet another one just two weeks ago and it was clean too. In sum, I've been doing things right, so the rest of me is cancer-free.This is almost unheard of, particularly given the drastic state I started this journey back in 2011 when I was diagnosed with virulent Stage IIIC, Her2+, locally advanced, highly aggressive breast cancer. It takes a lot to beat that!
I cannot find other women who have had this experience of being cancer-free elsewhere, while developing 100% removable, irradiatable brain mets, so we have little to go on as to my long-term prognosis. Please ignore the bleak statistics you find on the Internet because they apply to a completely different, gravely ill population that has little resemblance to me. The only other woman my husband could find whose disease presented the same way mine did, with no cancer elsewhere and removable brain mets, is still going strong ten years later. So that's an encouragement. I hope she lives to be 100!
We are of course, not going to just sit around and hope that magically happens here. Dana has already scoped out a ton of trials that I might qualify for that will keep me ahead of the cancer -- one of them as far away as Portugal. (How would that be for a dream food-medical vacation? ;)
Take heart. Despite what the charlatans claim, the reputable medical community is devoting nearly limitless brainpower and resources to this fight, and brilliant researchers are making life-saving breakthroughs every day. If there is a trial that will save my life, by the Lord's grace I will find it, and I plan to be with you for many, many healthy years to come.
p.s. Lord willing, I will be back on the air this Thursday with a live update on all of this in Hour 1, and I have scheduled James Perloff (author of Tornado in a Junkyard) to discuss Darwin's birthday during Hour 2. I know my listeners are not the call-in crowd, but please humor me and call in if I ask you to. :)