Friday, April 17, 2015


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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  1. I am sorry about your neighbor. Please accept my condolences.

    I too experience a lot of “guilty feelings,” especially with my family members who live in the Dominican Republic. I am very lucky to have access to excellent hospitals here in NY, especially Sloan. But when I hear a family member of mine is diagnosed with cancer, I feel really bad because they are not here to receive the same care I get. Not saying there aren’t good Doctors in the DR but it’s not the same. I want the best for them.

    I think it’s very natural for some of us to feel guilty because we are humans. And we care. I also know others cope with these feelings really well. I am aware it isn’t our fault we survived and it def. isn’t our fault others are dying from this illness. But that’s not enough. We want everyone to survive, and when they don’t, we ask ourselves “why?” and even go as far as questioning our existence (at least for me).

    I see what you said about mental health, how these feelings can impact it. Part of this whole experience with cancer involves mental health.

    I can’t tell you not to feel guilty because it’s a natural feeling to experience. But what I can say is that it’s not our fault. We have no control over these things, sadly. All we can do is be there for others when they need us; and when we can. I am sure your neighbor knew your situation and understood it – because remember, only those who have walked “the path” get it. We like to beat ourselves up, but honestly, we really try.

    Please be safe. xo

    1. Thank you, "little c" ..... I'm finally organized (as organized as possible) and just reviewing my presentation which will be tomorrow at 5:30. Practice, practice and practice some more.


      PS-The Visible Ink gift from Judith is making the trip to Philly with me. Perfect size to be a traveling desk!


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