Thursday, March 17, 2016


I know it's not proper to start a blog post by saying, "sorry I haven't written" so I'm doing it with a twist. (Actually, I'd like to know who made this list of blog rules including the one to make sure to ask three questions at the end to engage an audience. I say, if I haven't engaged you long before the end, you ain't getting to those questions. I'm pretty sure I've never ended a blog by asking a question. Not my style and frankly, a bit too obvious? Not sure, rant over.)

I've challenged myself to come out from the shadows. Since the last post was a taunt to Come And Get Me for my act of civil disobedience, (really a nice way of admitting that I broke the law), no one showed up at my door touting handcuffs (which, perhaps I might have welcomed if..... never mind). Thus, I can't blame an incarceration on my absence.

I'm here, but with zero time to put together a coherent blog post that would actually matter to anyone except, perhaps me.

Lots of things are swirling around and I miss writing and sharing. I miss my blogging sisters and brothers. I miss the sense of community that is the blogosphere. My ability to write is definitely compromised. I'm rusty. Practice is essential to keep any skill sharp. I look back at some of the things I've written and I honestly think, "I didn't write that, those had to be someone else's words." So, I see the rust.

And despite seeing that rust, I don't know if there is anything I'll be doing about it any time soon. I want to say a hopeful yes.

And I want to share, for anyone who may be wondering, what I've been up to. I'm going to bullet point this because it's just going to be a jumble of things that pop into my head.

  • First and foremost, mom is stable. Meds are working and for everyone on FB who jumps in when she freaks out, I thank you.
  • My twitter world may realize that I'm juggling some life events that I'm not ready, or in some cases not able, to fully share. Recall that thing about invading the privacy of others when we blog?
  • I have more anonymity on twitter so if you're there, you may see I've been spending lots of time at the ocean. It's a life sabbatical. Clearing my head. Seeking clarity. Finding direction. And it's beautiful.
  • My long walks on the beach, the proverbial cliche comment frequently used to entice a first date (which I'm not doing by the way, dating, I'm still very much committed to my family), but, those walks have netted me a shell collection that I find hard to believe I picked up on the shores of the Atlantic on Long Island. My kids would be mortified. Mom's that stupid shell lady. Tough shit, kids. The collection is extensive and gorgeous.
  • So what's been going on? As I stated, I escaped the drug episode legally unscathed. Except for that pesky broken finger episode, unscathed. And for the record, splint is done but they still hurt and for the expanded record, ring finger bones were "crushed" - which, according to the doctor sounds really bad. I pictured slamming a walnut with a sledgehammer when he meant sort of crushed together like people all rushing the gate and crushing together.
  • Let's see what happens when I must get the renewal filled. Time is approaching as it takes several weeks to get the pills. Have I just jinxed myself? Let's hope not on two fronts: getting the pills (super important) and staying out of civil disobedience jail (although, that would just further add to the adventures of AnneMarie). Stay tuned.
  • While I'm in the health insurance rant, if consumers are only permitted a certain window of time to decide upon an insurance plan, I think the insurance companies should only be permitted to change their networks or their drug formularies within that SAME WINDOW. The deck is stacked and I'm disgusted by the whole thing. And yes, this DID just happen. A policy was selected based upon a hospital network that is essential to the care of a loved one. Notification was received that hospital is no longer covered as of March 31st. This same company did the same thing last year with a different hospital and I do believe it was within the same window of time. I'm investigating before I open my big mouth but if that turns out to be the case, you can be sure I will be up in the face of the people in Albany who oversee the insurance companies. STAY tuned.
  • Am I a magnet for shit storms? Just thought I'd toss that in here because it popped into my head which leads to.....
  • Chemobrain continues to challenge me, distract me and precludes me from doing one tenth of what I set out to do in any given day. So, I prioritize. Or I kid myself into thinking I prioritize. When my car gets repossessed because I forgot about the bill for a month or five, I'll realize my ability to prioritize is part of the chemobrain problem.
  • I have attended a couple of meetings in NY and in the immediate, easy to get to areas (Boston, Philly, DC and soon, Syracuse - How Upstate convinced me to walk a runway in some scanty clothing at my age just speaks to how powerful she is as getting things done, stay tuned for photos, or NOT). 
  • Being at meetings or even doing a special day project (keep your eyes on Upstate who is doing amazing things for Lyfebulb and Wisdo) generally messes up whatever else I have going on but I come back enriched  by the presentations and mostly by the people connections, so it's worth the commotion of getting back on track.
  • Getting on track generally starts with cleaning the inbox of 900 emails (mostly retail offers from a few places where I love to shop-delete, delete, delete-don't call me, I'll call you and I opt out at least 3x a month to stop the nonsense), followed by many from women who are ready to take care of my every desire in the bedroom, some touting aforementioned handcuffs, just sayin' (I'd like to know how and why my computer thinks I'm a guy, and although some of you sound very interesting, the ones who are complaining about their husband's inability to satisfy them, might I suggest a sex counselor or perhaps, divorce? Man up and walk. Must it be cheating? Just a suggestion.....), followed by some requests that I'd love to answer and I apologize if I've not (seriously, if you haven't gotten a response, your email is likely in my unread pile so I don't forget, I just haven't gotten there and it could be way more than a month old), and an occasional very important one that is always the one that gets lost for a week or more, and usually has a deadline attached.
  • At present, I am preparing for the AACR Annual Meeting. I will be participating in the Scientist <--> Survivor program. Having been through the program twice, my only means of participating was by applying to be an advocate mentor.  I was accepted and invited and I fear, I'm far above my pay grade but the folks at AACR think I can do it so I will do them proud. Or totally embarrass them.
  • I am also exceptionally honored to be serving in the role of Scientific Review Officer (SRO) for METAvivor. It was a bold move by METAvivor to put a patient advocate at the helm for their peer review process and I was deeply humbled to be asked to handle their 2015 Grant Cycle. As it turned out, they funded ONE MILLION dollars in grants on 12 promising proposals that target the already metastasized patient. The first 12 researchers on the list are the 2015 awardees. Sort of humorous that my, as they say, "first rodeo" happened to produce funding which exceeds all prior grant years combined.
  • I was asked to continue in the role for the 2016 cycle so I'm guessing I didn't mess up the first rodeo. We have sixty one letters of intent to review to determine which ones fit with METAvivor guidelines. In other words, I didn't grow into this SRO role, I kinda jumped in with both feet, swimming furiously to keep it organized (for those who don't understand peer review process, mostly, the SRO's role is somewhat similar to heading a committee. Lots of delegating but also, lots of understanding of who is the best person for any given task which requires understanding the research, which I look at from a science perspective and also from an impact perspective). PEER researchers actually review and recommend which grants they think are most promising. Don't want anyone walking away thinking I decided where to spend your hard earned donations. No, it was a group of highly qualified researchers, reviewing the proposals of their peers. 
  • True metastatic research. Not writing off the mets community with "prevention of mets" which is something that irks me to no end when other organizations claim they are funding or supporting metastatic research. In fact, there is a blog post I wrote for the METAvivor site way back in June of 2012. I've been yelling and screaming about this for a long time, apparently. Longer than even I realize. Almost four years have passed and I'm still only hearing (mostly) the Sounds of Silence.
  • On a very personal note, I invite you to join me in sending support to my buddy, Jack Whelan. He's been dealt a shitty hand and it was in part because four different teams that are already treating him for a rare blood cancer neglected to do a PSA. One of the oldest tried and true biomarker tests, and no one thought it was important enough to check the labs? He now has an aggressive, metastatic prostate cancer. He's already on it with the research community and he is hopeful, but this should never have happened. His daughter wrote a blog to let everyone know about her dad. I'm certain Jack will tell the rest of the story of the screw ups because that's Jack. Everything is a teaching opportunity. Jack is an advocate's advocate.
  • There are others in the metastatic community that could use your support, too. I say, send support to that entire community although some are in worse spots at the moment than others. You each know who you are. I send love.
  • Til I get back here, play nicely in the sandbox. I miss all of you. 
Time to hit the yoga mat and then go pick up more shells which I will happily share in the sandbox. And yes, that shell in the front is as big as it appears.

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