AACR, IBRANCE, SURVIVOR'S GUILT, METAVIVOR AND ANYTHING ELSE I CAN THINK OF

I'm putting the last of my things together so I can head to Philly tomorrow. Driving will be a good thing this time because I do not have the head for packing efficiently.  Plus, this laptop, the internet, the cloud, the fact that I added yet another device to my repertoire of places to find information, realizing I now have have five clouds where I have information and simply not being able to get out of my own way has created a perfect storm also known as "The Mess That Lives In My Brain."

Some important things. Use twitter? Start follow the #AACR15 and the #AACR15SSP hashtags. I suspect the uptick has begun as many people are traveling today. I'll get to see what I'm choosing to call META-4, the METAvivor #C2C4MBC vehicle that is already on its cross country journey. It will be in Philly along with CJ, Kelly and Lori. I'm excited to see them and I'm especially thrilled that Lori and I will be able to tag team live tweet from a conference for the first time in OVER TWO YEARS.

Monday through Wednesday should be interesting. I'll be following the #NATCON15 hashtag, too. Live tweeting from one meeting and remotely keeping an eye on what is happening in Orlando at the National Council conference which is about mental health is just what my brain needs. More chaos. Although, Lori is the one that keeps me grounded in these situations which is not intended as a pun on her social media identity: regrounding. And, I have to wonder if the combination of two chaotic brains in a hotel room makes the chaos exponentially higher? I'll report back. It could be the basis of a study on chemobrain. I'm just sayin'

This is a blog post in several parts. To my mets friends, if you want to skip to the part that I NEED you to know, skip this block and move to the italicized section. I know good blogging rules say that the posts aren't supposed to be long AND, I'm supposed to insert photos. I guess I suck because I don't follow either of those rules. Ever.

This is about that survivors guilt thing which really fits in with the mental health issues, thus the need to watch that other hashtag. Yesterday, I was at a wake. Tuesday I was at a funeral. Last night, I crashed. Hard. I realized the emotions that have overwhelmed me are likely survivor's guilt in every form. As I walked into the funeral home last night with an unbelievably large crowd of people, I was struck by the contrast in the way different cultures deal with death and how we bid farewell to those who have died. I had Seporah on my mind as I stood in the room waiting to offer my condolences to the husband and two sons of my neighbor.

When I approached the casket, tears spilled. One of my neighbor's sons is the same age as my son. This young man sent the funeral information to my son with a note saying something about me. How he knew I had my own problems and to cherish that I'm here because he didn't expect his mom to die. When I saw this same young man last night, he asked me how I am doing. That was like a knife to my heart. "I'm fine," I recall saying, "everything is okay." As soon as I walked away, the guilt hit me like a freight train. His mom was fine, too.

Eight years ago, she was fine, She showed up at my door just as I was finishing my active treatment. She.Was.Pissed. Because our kids are all grown and in this land of suburbia, we jump in our cars on our driveways, run around town taking care of errands, we rarely stop to see anyone. People find out about what is happening, literally in the house next door, because we may have bumped into a mutual friend in the grocery store... and then news begins to spread. I remember her, sitting at my table, "HOW could you be in treatment for cancer and not tell me. I'm right here, I want to help." And the thing is, there are sayers and there are doers. She was the latter. She would have been here every day just to check in. Of this, I'm sure.

It couldn't have been too many days later that she was at my door again. "Can I talk to you?" She was diagnosed with a very early stage lung cancer. She was told by her doctor, it was "treatable and curable." I offered encouragement despite hating the word "curable" being used, particularly with lung cancer. I spoke to her frequently as she began treatment. And as things began to get better, our conversations dwindled. That's part of the guilt I feel in this moment.

Sadly, when I ran to her house upon learning of her death, her dad was there. "We were just talking about you. You just missed her husband. We were talking about that Sunday when you came here and we were all here talking." And somewhere in the course of our conversation, he, too, said those words. "That doctor, she told her it was 'treatable and curable' and today she's gone." I'm still not clear what happened. I do know it returned in the lung, there was a successful surgery and then, apparently, it metastasized to her brain. Piecing this together, I think that was discovered about six months ago.

I still saw her outside, as recently as last week. And that's the thing with cancer. Yes, she was struggling but she was, in the grander scheme, okay. Except her insides weren't and until they decided to display as symptoms, and then, when those symptoms couldn't be managed, she was rushed to the hospital. She died a few days later, "still cursing" and apparently quite coherent. She chased everyone home. "I'm fine." In other words, no one in her family realized she was on her death bed. At 2:30 in the morning, she was gone. And why didn't I realize all of this was happening just steps away from my door? Yes, guilt. She would have been here in a second, and without me calling to ask. Why didn't I ring the bell just once to say "Hey...." And her heartbroken son.... asking me if I'm okay? I feel very unworthy of that concern.

I'm going to step away from that guilt to share something that is VERY important for my metastatic friends. VERY important so pay attention.

I read this the other day but in the midst of the chaos, I failed to share or I didn't realize the significance of the information I was reading because I couldn't focus. Pfizer stopped their phase 3 study of "palbo" which is officially named Ibrance. It IS FDA approved as a first line treatment in the metastatic setting. Once a drug is approved by the FDA, doctors are free to prescribe it in whatever setting they choose. Having it approved by the health insurance company could be another issue altogether which is WHY this is important information.

In the official Pfizer press release which has been picked up in many of the medical feeds, the study was halted because of the remarkable results as determined by an independent monitoring committee. It is now being fast tracked for use as an any line treatment for metastatic patients with ER+/HER- breast cancer. That approval is pending which means your doctor may prescribe the medication but your insurance company can deny coverage. Should this happen, it is up to you to step up and be the engaged, educated and empowered patient and inundate them with every single article you can find regarding the PALOMA-3 study.

If they still say no, know the rights in your state to appeal the decision and follow them. That's usually a two-step process. First the appeal is to the insurance company and then, it is to an outside appeal board. Generally there are time limits. Be mindful of those and of course, there's always social media. If you are refused the medication, start a ruckus on social media. Twitter would be the place I'd suggest to make the most noise and have the message amplified.

With advance apologies to the oncologists, if I were being treated for metastatic disease which is ER+/HER2-, I would ask my oncologist if s(he) thinks it is appropriate to add "palbo" to the protocol. Your doctor is the best source of information regarding your specific situation. I've never been one to dispense medical advice and I'm not about to start now. I will however, offer suggestions and this is just a suggestion. If the oncologist thinks it's a good idea, run with it. If s(he) thinks not, you aren't being unreasonable to ask why not. They have the details. I'm just looking at the big picture and besides, every person is different, every cancer is different and there is no one size fits all. 

Having shared all of that, I'm going to get on my soapbox about clinical trials which ties directly back to how I began. AACR and Clinical Trials Save Lives. Those who chose to participate in this trial will continue to receive the drug while it is in the approval process. IF you were eligible and IF you were in this study, you wouldn't be waiting. There are too many misconceptions about clinical trials which I hoped to clear up in a recent post. And that is why I hope everyone will please REVISIT my plea to consider joining the study I wrote about here, which has since been cross posted on the Trial Reach website.

And now, back to my messy brain and my packing and whateverthehellelse I'm supposed to be doing so I can be on the road in just about 24 hours. Here would be an appropriate place to insert that essential photo showing exactly how much of a mess I have in at least three rooms as I try to pack what I need. Use your imaginations, I'm sure you won't even come close...

For me, it's off to the races. The Rolling Stones don't know what the hell they are talking about.

TIME is definitely NOT ON MY SIDE.

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METAVIVOR AND METASTASIS RESEARCH SOCIETY FORM NEW RESEARCH ALLIANCE

This is big news! Earlier today, METAvivor announced a new research alliance with The Metastasis Research Society. The new alliance is focused on improving and extending the lives of all patients living with metastasized cancer of any type. Now that research is being conducted on the molecular level, it just seems to make sense to study metastasis in its entirety in addition to the research being conducted specific to primary disease sites.

I, for one, as a supporter of METAvivor, applaud their forward thinking vision to partner with The Metastasis Research Society to work toward extending the lives of all cancer patients while preserving the quality of their lives.

Cancer, after all, ain't just pink.......

 

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FOR SEPORAH WITH EVERLASTING LOVE

In the clearing stands the boxer and a fighter by his trade,
And he carries the reminders of every glove that laid him down
And cut him til he cried out in his anger:

I am leaving I am leaving but the fighter still remains.❤️

— Seporah Raizer (@SeporahRaizer) April 9, 2015

Seporah's very last tweet. She knew. We all knew. That doesn't make it hurt any less, indeed, it makes it hurt that much more. I have a candle burning and will continue to let it burn until the last bit of wax extinguishes the flame.

Seporah's light will never be extinguished. Just like Annie's light.

Please read Seporah's own words, in her HuffPo blog which she wrote just three months ago when Annie Goodman died. Diagnosed just a day apart and death within 4 months of each other, friends from Long Island from the ripe old age of nine, neither would see their 35th birthday.

Light a candle, celebrate her life, shed the tears that must be shed and remember to honor her in the way she would want. For now, I am giving in to the anger and the pain that runs through the lyrics of the Simon and Garfunkel song, The Boxer that Seporah quotes in that very last tweet.

Upstate AnnMarie, I know you are hurting along with so many others but I know your hurt runs deeply. I send you love and gratitude for everything you did for Seporah and all you continue to do for the entire metastatic community.

Seporah, I know you are a Billy Joel fan.... Every time I hear Only The Good Die Young, I will see your smiling face and hear that laugh and know that truer words aren't found anywhere....

only the good die young


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STILL HERE, JUST NOT NECESSARILY "HERE"

This is exciting. Two years ago, I had the honor of being invited to the Annual AACR meeting. I was in the scientist <--> survivor program and it was quite simply, a wonderful experience. In one week, I will be in Philadelphia for this year's meeting, again as an SSP participant.

What's more exciting? I was asked to give a presentation on Social Media for Scientists. The slides have been submitted, my narrative is still being developed and will be practiced several times. I have a poster to prepare. Those who have been along for this ride with me over these past two years may recall my big poster unveiling. And then, there is the group presentation. I'm putting together notes for that, too.

I'm working with Trial Reach to help fill a research study for patients with advanced or metastatic breast cancer and I am committed to helping METAvivor as they wind their way across the country. There are a few other things happening behind the scenes. The Visible Ink workshop I mentioned in my last post was one of those things.

Tons of things happening, some of them I'm not at liberty to share, others are simply not my story to tell.

I suppose this is my advance absentee note. I'm still here, posting new content when I come up for air. If you've sent me an email and haven't heard back, you will. Find me on Facebook. Although not my primary spot for social media, I did manage to catch the attention of, AND get a rather lengthy response from the American Cancer Society when I had a mini-rant over an article they posted about those five year survival rates.

I'm triaging my life right now which isn't the easiest thing to do with a chemobrain.

Stay Tuned...... and tune in to twitter, too. It's my go to place to keep up with current events. And it's where my big mouth will be broadcasting from for a few days next week. LOOK!


Join @weldeiry @cancerassassin1 @chemobrainfog at #AACR15 Social Media for Scientists http://t.co/wuwglB3xYA pic.twitter.com/VGjIxttTEF

— AACR (@AACR) April 9, 2015

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MAYBE....I'M RIGHT WHERE I BELONG

Apparently, I'm not allowed to go away. I'm off the grid for a total of five days, recharging the batteries, dropping off this island and on to one with palm trees, soft breezes and the sound of the sea lapping at the shore. And in my own backyard, on the island where I spend most of my time, an epic announcement was made. Literally, right down the road.....

Cold Spring Harbor Labs, truly in the Rolls Royce category when it comes to research facilities wants to move beyond the microscope, beyond the omics and take their science to human subjects. That's science speak for it's time to see how our observations in the lab may help persons diagnosed with cancer. That's also science speak for, this is exciting.

Yes, I get it. I'm a science geek and I've stated on more than one occasion, I don't know precisely how or when this happened. I do remember gagging in the hallway in my sophomore year in high school when the smell of the formaldehyde or whatever they used back in the day to preserve those frogs and earthworms was wafting through the biology wing of my rather large suburban school.

I'm not a fan of frogs or worms but having that small scalpel placed in my hand was not for me. Just because I don't care for these creatures didn't mean I was ready to start digging around their insides. I may have excused myself for an extended bathroom break. I may have taken a zero for the dissecting unit in tenth grade biology. I'm not sure.

Today, everything is different and a few days ago, CSHL joined forces with the largest hospital consortium in this area, North Shore LIJ. I may not be a fan of NSLIJ as it was in one of their hospitals that I was dismissed as the idiot with the big mouth back in October. Maybe they will find their way back into my good graces.

I love the title in Genome Web.

CSHL, North Shore LIJ Pact Marries Omics Research, Clinical Oncology to Speed Rx Discovery.

I'll be attending the Annual AACR meeting in about ten days. The scientist <--> survivor program is one that is filled with many projects and as fate would have it, the group I am part of was assigned questions about "omics" -- genomics, epigenomics, proteomics.

Maybe I should take a ride down the road to get a leg up on this omics stuff before I hit Philadelphia?

Maybe, I should think about getting that poster prepared?

Maybe I should practice my oral presentation?

Maybe I should think about every other damn deadline that seems to be hanging over my head at the moment?

Or, MAYBE..... just maybe.... I'm going to have a bit of a celebration as I watch that thunderclap go live at 3PM Eastern as METAvivor launches their Sea to Sea campaign.

Followed immediately by a conference call after which I will hop into my car and head in the direction of Sloan Kettering to assist with a seminar on blogging. That seminar, being offered by the Visible Ink Program is the hook upon which everything else in my life hangs.

Without Visible Ink, there is no blog. Without this blog, there is not advocacy. Without the advocacy, there is no meeting, no volunteering and no passion for research and science and clinical trials and everything else that has come my way.

Maybe, instead of feeling like I'm a hamster in a wheel, I'm going to take a deep breath, allowing the air to bathe me in gratitude.

Life has been kinda sucky. But I'm putting the sucky parts in a box for now. When I tie up all of these obligations, I'll let the bitch session begin. Trust me, it's gonna be good.

Right now, it's time to keep laughing..... and to share what has now become one of my favorite in real life moments EVER. It's Upstate AnnMarie, Stupid Dumb Breast Cancer and me. Laughing til we almost fell over!

And then remembering we had to get our acts together to speak at an event together just a short time later:

And maybe that's just barely scratching the surface of what I'm forgetting about... and maybe that's why this blog isn't getting updated nearly as frequently as it should.

But maybe, I AM right where I belong.

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