ABOUT ME

This blog was launched in July of 2011.  It's barely two years old.  I would love to attempt to update a narrative bio, but I think bullet points may be easier. I have returned to update this page a few times and this blog will be five in July. Ready for kindergarten.

THE MEDICAL STUFF

• I was diagnosed with invasive lobular breast cancer in July of 2006 after four months of imaging, in office biopsies and ultimately, the surgical biopsy that found what is known as the *sneaky* cancer.  I thank the tenacity of the initial radiologist, the radiologist at MSK for her persistence in finding that *density* when doing the core biopsy.  "If he saw it, it was there, I'll find it."  The surgeon who skillfully removed the area and the pathologist, THE PATHOLOGIST, who read those slides.
• It was two months of running around and researching options before I ultimately had a bilateral mastectomy with tissue expanders that were exchanged for cohesive gel implants (gummi bears) which were still in clinical study at the time and approved (quietly) by the FDA in late 2012.
• Yes, I have a family history of breast cancer.  There are, for all intents and purposes, five diagnoses of breast cancer among my mom, my sisters and me.  Four of those were pre-menopausal.  
• Our family genetics is a mess.  I have mutations of unknown significance on both BRCA1 and 2 which as I understand, is sort of unusual to return that kind of result on both genes.  Oh well.  I also understand one or both of these genes may have been declassified but I have little faith in that information since only one lab using one methodology is, at the present time, able to verify any of this.  Also, I've not received any official notification which makes me even less confident in the integrity of The Lab. (The Supreme Court case will be heard within weeks so this may or may not be relevant if I fail to update)
• Most recently, I tried to get my complete record from Myriad. Apparently, it's lost. Yes. Gone. Lost. At least that's what they tell me. Stay tuned.
• I did eight rounds of chemotherapy (CMF) which was believed to be a gentler treatment protocol.  I never lost my hair.  I feel like a chemo fraud.  It's all about the hair.  However, I have ongoing cognitive issues that seem to have worsened and some seem to have jumped on the scene later.  My chemo was complete in March of 2007.
• I am presently NED
• My mom had primary breast cancer in 1987 and a second primary in August of 2007.  She had aggressive treatment in 1987 as there was nodal involvement.  In 2007, she had early stage disease.
• My mom is now a metastatic patient.  Somehow, despite hitting the 5 year *celebratory* date, her cancer progressed to a rib.  There is no way of knowing if this was a dormant cell from 1987 or from 2007.  Each scenario is equally horrifying.  A stage IIB cancer resurfacing after 25 YEARS or a stage 1 cancer of an area that was being watched closely because of her history (and then more closely after my diagnosis) spawning a rogue cell that took over five years to activate. 

THE PERSONAL STUFF

• I have two grown kids.
• I was working in a high level accounting, managerial position (NYC commercial construction, unions, etc.. it doesn't really get much crazier than that) and had to step away because of chemobrain.
• I spent at least two years beating myself up over my inability to perform at my job.  I blamed a changing work load, constant interruptions and a host of other things before I realized "There may be a problem."
• I had a neuropsychological evaluation, was deemed to have issues "primarily around numbers," entered a clinical study (results not yet published) and realized I had to switch directions in life.
• I began this blog with the help of the Visible Ink writing program offered at no charge to all patients at Memorial Sloan Kettering Cancer Center.
• I embarked on a journey of volunteerism and I am well aware how fortunate I am to have the means to have done this for these past two years.
• It may be time to start thinking about ways to earn a living.
• A very dear friend told me, "Pursue your passion, keep doing what you're doing. It makes a difference. Things will fall into place."
• Things are falling. Into place, I mean. There are times I am being provided a stipend or a consulting fee. I still only align myself with organizations or causes whose values, beliefs or products speak to my passions.
• I'll never sell out. I won't endorse anything, not one single thing, for the sake of a payday. It's who I am, it's how I was raised. Plus, I suck at lying.

HOW I GOT HERE

• The blog, which began as a means of me unclogging my brain became a vessel to the outside world.
• People began reading and commenting and I became very active in Social Media.  So-Me which was just reframed to me as "So-WE" is the essence of So-Me: Community and collaboration.
• My preferred platform is twitter and the blogs, recently added Linked In, have had a G+ account dating back to the days of "you need an invitation" but I haven't embraced that platform fully. Facebook WAS a means of stalking my kids, then became a means of keeping up with peripheral family things but now, worlds have officially collided.  There are no lines.  They are blurry enough to move seamlessly to have blended together "what I do" and "who I am" which is fine by me.
• I stepped into the world of advocacy.  I began as a patient volunteer at MSKCC, a role I love.  Shortly after that, I sought active volunteer roles within the Love/Avon Army of Women.
• Those volunteer roles opened many doors.  I found my voice.  I became the cliche.  I changed my entire life, completely switched paths at a point in one's life when you simply don't do that.  Except, if you do.  And I did.
• There is a page with my "guest appearances" where you can see some of the places I've been, 2D and 3D.  And some writing.
• I am passionate about research.  All research.  Across all diseases.  Once I discovered that passion, I found my true voice and I won't be silenced until I see REAL and MEANINGFUL change.

JUST STUFF

• I live in NY where I have lived my entire life.
• I prefer beaches to mountains, although a five day stay at Miraval in Tucson, AZ, the mountains are pretty damn awesome, too.  Proper attire is key.  I'd love to zipline but I wonder, "Will it dislodge my implants?"
• I had the good fortune to return to Miraval almost five years after the first time I was there. It was part of a program for cancer advocates and it was off the charts amazing.
• While I really wanted to zipline, I apparently decided to take on the most challenging activity available.
• I love to know what happened to the timid, shy little kid because I can assure you, prior to now, there's no WAY I would even entertain a fleeting thought, and yet I did.... climb a 35 foot pole and then take a quantum leap. Yes, I was tethered. And terrified.
• I support the research of Dr. Susan Love and her quest to understand the reason why some of us develop breast cancer.
• I KNOW the metastatic community at large deserves far better than we have given them.  We should be funneling more of the research dollars into determining how to stop a metastasis from progressing.  Prevent death is not a priority and that upsets me.  Stopping mets in the first place is important but staking claims that this is going to help those whose disease has already metastasized is speculative at best and it troubles me.
• I ONLY support organizations whose missions and beliefs align with mine.
• I don't disparage against organizations with whom I don't agree.  This doesn't mean I won't say something.  It just means I will be respectful.  Always agree to disagree and ALWAYS with respect that we are all different and each of us has a right to our own beliefs.
• That entire statement does NOT apply to snake oil.  Those people/organizations are committing murder.  Doctor Oz is coming very close. Ok, as of this update, he's crossed the line.
• I tend to take things to an extreme when I know I'm right.  When it comes to evidence based medicine and good science, I know I'm right.
• I hate headlines and sound bites.  If it sounds too good to be true, it's definitely NOT true.  So far, I've found no exceptions so I live by that rule.  Call me jaded.  It's the New Yorker in me.
• Nothing on this blog has been put here because I've been paid or enticed in any way.  If I believe something is worthy of sharing, I will share. There are now things for which I've been provided a stipend or a fee.
• I'm not a sell-out. If I don't feel a product is above and beyond, there isn't a fee large enough for me to share in the space.
• I've gotten some street credibility and have had the privilege of being asked to consult or assist with some projects and in some cases, I am now being provided a consulting fee.
• I feel the need to share that because I believe transparency and honesty is always the right way.
• I feel uncomfortable sharing that because I don't want to seem like I'm bragging.
• I'm more uncomfortable not sharing because it just feels dishonest.
• Just because I like something, doesn't mean it works for anyone else.  The opinions are my own.  Respectful comments, regardless of oppositional viewpoints are always welcome.  It's how I learn.
• I have a real thing for screaming headlines, celebrities dispensing medical advice and skewed statistics. Journalists who do that are irresponsible, and anyone who gives a celebrity a platform to share (or in some cases exploit) their disease must act responsibly. Those disclaimers at the end of certain commercials would be fine. Even though they are spoken so quickly, we are lucky to catch just one word, at least the noise would provide a hint to the audience to read the fine print.
•  In medicine, the real celebrities are the researchers, the clinicians and those of us who live with a disease every day. And the award winners? The caregivers. They are in a category of their own.
• I believe I am empathetic.
• I live with passion.
• I do have chemobrain, I defy anyone to challenge that statement. My brain was physiologically damaged according to every bit of research I have read.
• Speaking of the brain, mental illness is a disease of the brain, not a behavioral issue or a problem with the mind.
• If you wouldn't expect a diabetic to just snap out of it, extend the same understanding to persons with serious mental illness. The stigma must stop and it's up to each and every one of us to learn, to attempt to understand, to stop expecting things that are not possible.
• If those of us whose brains are not diseased can't follow prior statement. There's just one thing TO DO. Quite simply, shut the f*k up.
• When we force unrealistic expectations, even in the most subtle fashion, on those living with serious mental illnesses, we are part of a very large problem. And we may being doing further damage. 
• I AM a breast cancer patient and I will be for the rest of my life.  And I defy anyone to challenge THAT statement.
• I love shoes.  The more impractical they are, the more I like them.  I may snap an ankle one day.
• Yoga DOES count as exercise.  And meditation.  Effective use of time and multi-tasking, too.
• I can no longer multi-task thanks to chemobrain.
• I was the person with an organized and alphabetized spice cabinet.  Today, I may not bring my mail in for three days.  Might not open it for another three....(ahem) weeks. 
• Rhett Butler on all of that: Frankly, I don't give a damn.
• Everything on this earth can be fixed if we try hard and work together.  Except death.  
• Death is part of life but I can still be pissed off about what should be preventable or untimely deaths.
• I love deeply.
• I have nothing against the color pink aside from the fact that it's really not a flattering shade for me.
• The pervasive pink culture?  Not for me.
• I'm probably not militant enough for many but I've found that militant stances are most effective when tempered with a calmer approach.  In other words, some of my beliefs may be militant but if I don't speak in ways others may hear, being militant serves absolutely zero purpose.  Ditto judgmental.
• I am judgmental but not in a bad way but as a means to change things I think can be made or done better.
• I don't judge.
• Each day, every day, I try to make a small difference in any way I can.
• The only way to see the change is to BE the change.
• I love those in my "virtual world" as deeply as I would if they were in my every day 3D world.
• YES, that is possible.
• I spend lots of time shaking my head in disbelief at where I am today and where I was in May of 2011 before I was evaluated for cognitive issues.
• Collaboration is not a topic or a buzzword.  It's a call to action.
• Patient engagement is an idea whose time should have been here a long time ago.  We still have far to go.  I'm all in.
• Somehow, I already see how this "Just Stuff" list is going to continue to grow and evolve.
• Stagnant stinks in every form. Keep moving, evolving, growing. It's never too late to become who we might have been. Thank you George Eliot for that brilliant and accurate observation.
• I'm NOT afraid of dust ups and I'll jump in when I feel it's appropriate, like here
• I'm REALLY pissed off about my mom's metastasis. Lots. 
• I miss my dad.  Lots.  And then some.