Friday, March 27, 2015

Come on humanity, let's get it done!


My heart is as heavy as a black hole right now. Being a long-term survivor of a devastating and rare disease is REALLY HARD.  When all you can say to someone who was told that they have metastatic disease after 5 years of being NED is that you will send them positive thought’s, it’s unacceptable. When people reach out to you and all you can give in return is a sympathetic voice, it’s unacceptable. IT IS UNACCEPTABLE that we as a species have not put more effort into bringing this disease down. We can do better, all of us. We can turn off the TV for a few minutes a day and figure out what we can do with our unique skill sets to do better. We can redefine the way that science is “tackling” cancer. When scientists care more about high impact papers, and getting tenure than they do about curing disease, it’s UNACCEPTABLE. I have seen it first hand folks, and it doesn’t work. I do not believe that the current structure of PhD --> Postdoc --> Junior faculty --> Desperation for tenure --> More desperation for R01 --> meaningful but non-reproducible results that will likely not lead to cures = a viable option if we as a species are even remotely interested in curing disease. We need to break down the silo’s, collaborate more, initiate HUGE global efforts that will allow something more like PhD+Patient+MD+Mr & Mrs interested --> Big Data --> Resources for everyone to interpret --> much deeper knowledge base --> meaningful data that can be interpreted by all --> cures. Let’s figure this out. Please, let’s come together.

Tuesday, March 10, 2015

It's the greatest honor to know you my anonymous friend.



I know the most extraordinary woman and want to scream her praises from every roof top so that everyone can gain from her amazing perspective. Problem is, she is fiercely defensive about her privacy. She would be very upset with me if I revealed who she was to the world. So I won't. But perhaps I can reveal what she means to me without crossing over the deep lines that she has painstakingly carved in the ephemeral sand.

I will call her CN, the initials represent the pseudonym that we use when 'joking' about her experience as a person living with cancer.  There are a number of reasons that CN has opted out of the public eye, most of them will remain with her and only her, but there is one that I am absolutely sure of. She is alive.

There are a number of unfortunate events that often accompany peoples expectations of you when you tell them you have cancer. They no longer think of you as someone rooted in life. They wait for you to die. They tilt their head, thin their lips and offer platitudes. They carefully pick their words. They say the wrong ones. All the time. They cry. They think about their own mortality. They wonder how you could go on. In stark contrast to everything you have built in your life, you become the embodiment of death. The end.

But it's not the end. Not even close. CN is alive, right now. And with that life she is entitled to all the normalcy that any sentient being is afforded. I am moved beyond words by CN. Not because she has cancer, but because she is possibly the most alive person I've ever met. CN doesn't complain, but rather takes action. She doesn't want recognition for her actions, she just wants to see good things happen in this world, and if no one else is doing them, she feels compelled to raise the gauntlet. She is not driven by ego, nor by the desire to leave a legacy, but rather because sometimes in life, you can do things to help others. And if you are lucky enough to be granted that gift, you should run with it as fast and furiously as you can.

CN is teaching me daily how to pull out the very best that life has to offer. I smile when I think about her, I laugh when I reflect on our conversations. I have a deeper sense of gratitude for all that I have as a result of our friendship. I am in awe of her. I love her. She will always be a spring flower to me, offering life to anyone who has the ability to see her beauty.

Here's to you CN, my superhero, my partner in crime, my gracious friend.







Saturday, March 7, 2015

Fighting for the right words

Please don't take my fight away. What if I want my war analogies, my punches, my army's and drills. What if I don't want to relinquish my battle cries and arsenals, my calvary's and loss.

I will never put words into any one else's mouth, but please don't take them from mine. 

For those of you who have no idea what I'm talking about, I hope you never do. For those of you with strong feelings surrounding "THE FIGHT", I hope that you frame your "journey, no, experience, nope, struggles, not that either" maybe, "slammed by a cancer diagnosis and trying to stay alive..." characterizations in whatever way makes you feel that you can adequately express this indescribable thing that we happen to be going through.

I believe strongly that we are each entitled to use everything we can to express ourselves.  Words just happen to be the most tractable form of articulating "the___" for most of us. But each word is a choice that can evoke strong feelings in others, often unintentionally. 

I get it, completely. I totally understand why it's so incredibly offensive to be told by others that we are battling, that when we die, we lose, that if we want to live, we need to fight. Believe me, I get it like none other. And I don't want to offend anyone who feels strongly that those words should be stricken from the cancer lexicon. But I have a long history now of fighting, and I'm not sure how to reinvent words for the experiences that I have assembled with those now offensive words. I have 'fought' along side countless friends.  They would celebrate my 'victories' as they themselves were succumbing (another word that we should consider throwing out the cancer door). They would ask me to fight for them when they were gone. They implored me to keep their fight alive. So what am I to do now? They died before the tide had turned on what now seems like an obvious, "don't make the patient feel like they are losing" group of statements. I feel at odds because their posts, blogs, and other forms of lashing out again this disease are rife with what are clearly insensitive descriptions now. And if I leave them in the past with their fight, I feel like I'm somehow betraying their memory.

For me, I don't want to be (a) patient, I don't want to be passive, I never want to be controlled by this disease, nor by how other people think I should describe it. So what does that leave me with? How can I describe my (insert verb here) with cancer without causing great offense? I will continue to honor my friends in the manner that they desperately wanted me too. I will fight for them. However, for anyone who wants me to stand with them, I will put down the weapons and (insert verb here)!

With that being said. If one more person tells me to fight the good fight, I'm going to lose my (insert noun here) with them!


Thursday, February 26, 2015

Good mourning

I'm sitting in the Morse Conservatory at Dana Farber listening to a fake bird singing over a rather loud heating vent. This is not my first time here, but it is the first time I've entered this room without the anxiety that usually drapes over me like an invisibility cloak on scan days.

Same chair, same sounds, same body.

It's hard, very hard not to sink into despair as I grapple with my past sitting here waiting for my  day to start. Time has somehow dissolved into one moment, and I just looked to my left for the cup of tea that I wasn't supposed to bring in here months ago, or was it years? I know I'll be here again as a patient, waiting. But hopefully when that day comes, I'll be able to meditate on the time that I spent here simply waiting for a meeting with my colleagues.

Tuesday, February 17, 2015

Patient outreach

For the past 4 years and 348 days, I have been contributing to an online support group for people with angiosarcoma. My first post was to 8 other people who changed my life simply by responding. They were scattered across the country but might as well have jumped right next to me on the couch the second I realized that they were the only other people in this world who truly understood what I was going through. We are now 3 people away from reaching 2K members. Friends, family, doctors, patients and researchers have come together to greatly improve the lives of people at all stages of this disease.

And so it is that I have come to realize the power of the internet when coupled to the voice of the patient. We run the gamut as a collective group of people who have one mission: Help everyone we can, while we're still around to do it.  We can expedite appointments for the newly diagnosed, offer emotional support, fund research, perform research, and get many initiatives underway. And it's great, really great. But it's the tip of the iceburg.

There is so much to learn and am looking for mentors in the space of patient engagement. I am a biomedical scientist who was diagnosed with a rare cancer nearly five years ago. I have only recently become aware of the amazing efforts that others have already set in place to engage patients on many aspects of health and science. For the past several years, I have had my head buried in the details of the cancer research that I was conducting. I was hoping to cure cancer from the bench, but I wasn't  entirely convinced that my efforts to publish a few solid papers over the course of a career would have that great of an impact on truly propelling us toward any cures.

So I left the bench, and  have just recently taken a position at the Broad Institute of MIT and Harvard  as an Associate Director of  Operations and Scientific Outreach, where I am hoping to use my experiences as a patient, a patient advocate and as a scientist to help empower patients. How? Step one is to ask for details on what is being done by patients and patient leaders who are already doing this.  Where to start? Get a sense of the landscape of where patients are with respect to cancer research. I would love to talk to other people who are leading efforts in 1) Educating patients about cancer research 2) Partnering with patients in order to propel biomedical research in a patient focused manner 3) Using social media to interact with patients in order to ensure that anything I do is in collaboration with patients, and not what I think other patients want/need.

Thursday, January 1, 2015

My reaction to "Dying of cancer is the best death"


Let me preface my reaction to Richard Smith’s recent article, “Dying of cancer is the best death” (http://ow.ly/GG6QE) by stating that my dream is to live to his ripe age of 62 so that I too can have the opportunity to be controversial in the world of social media after I retire. Maybe I’ll decide one day to be plucky, and see what reactions I can get, just for fun. Perhaps after a longer lifetime, I’ll decide to write an article chock-full of incendiary remarks on a topic rife with human emotion. And if I do, perhaps I’ll be brazen enough to use it as a precursor for why the entire medical industry is just plain wrong. All in my humble opinion of course. But the key point here is the still being alive part. As for the rest of it? I doubt it.

What could he possibly be thinking? I wracked my brain for hours trying to understand what the author intended here. I didn't come up with anything good. What I do think is that the author was trying to be provocative, and if that's all he was trying to accomplish, I commend him for his efforts. Truly, bravo for venturing into the topic of death with nary a concern for people whose experiences with cancer might not easily be washed away by a sip of whisky.

I have known many people who slipped peacefully away in hospice. They too left their cancer-riddled bodies with all their final arrangements in order. But they are by far the minority with respect to cancer deaths that I have come to know.

My guess is that anyone who has sat by the bedside of someone moaning through breakthrough morphine that isn’t dulling the pain from bone metastases, might desire a different option for letting go of their mortal coil. As someone who is facing the possibility of having my body melt away in front of my children from a hemorrhagic cancer, I too have a strong desire to NOT DIE FROM CANCER.

I have made my video’s, written my letters, read my poetry and taken my road trips. I have said goodbye more times than I’ve said hello. And yet after reading this article, I wish that Richard Smith could relate more to the “pair of ragged claws scuttling across the floors of silent seas” that T.S. Elliot felt kinship with, than to the quirky death whisperer that he clearly aspires to be.

But than again, what do I know. I haven’t died yet.  And all that waiting in line to chat with Lazarus is too time consuming. I think I’ll take my chances and drive a little too fast, maybe forget my seatbelt from time to time. Maybe, just maybe, I’ll get lucky and live past this awful diagnosis so that I too can have the opportunity to die from something else.

Disclosure: I have angiosarcoma. No one would choose this path out of life.

Wednesday, December 31, 2014

Raising kids in a world of cancer

I always answer my cell phone when I don't recognize the number. Sorry mom, I know you've heard my voicemail a time or two. But nine times out of ten, if I don't recognize the number, there's someone on the other end of the line who is in desperate need of help. They typically need two things, help getting in to see a sarcoma specialist and help understanding what this disease is. I have ducked out of weddings, thrown experiments in the biohazard box, and excused myself from dinner countless times in order to answer an unidentified number. What I never stopped to consider was the effect that all this talking would have on my kids.

My nine year old daughter brought it home for me last year though. We were driving on the highway when my phone rang. I drive a 2007 minivan with almost 200k Massachusetts miles on it. In other words, it makes more noise than Fenway when Jeter was at bat. Needless to say, I needed to roll up the windows, turn down the music and focus keenly on the voice that was stuttering through their tears on the other end. My words were sobering and often morbid. Her brother was in a very advanced stage of the disease and she needed help overcoming the guilt associated with being a helpless caregiver. She needed reassurance that there was nothing she could do at that point. She needed to know that reaching out for help made her an outstanding sister, regardless of what was so clearly out of her control.

Charly heard things like, "Are his bleeding ulcers exposed?", and "I'm so very sorry, but I've never known anyone who lived beyond this point" and "Yes, I also have this same disease, but there's no evidence of it...right now" and "I'm so very sorry, I wish there was something, anything I could do to help."

I put the phone down after twenty minutes or so, wiped the tears from my eyes and turned the radio back on. Charly said to me, "Mom, I wish your phone never rang". I was instantly overcome by guilt like never before. In the split second between her lamenting and my apology, all of the calls came flooding back. How many did she hear? What have I said in front of her? How irresponsible am I to have my child hear the details of how cruel this disease is? She hears that it's the same disease that I have? That I could die too???? I was about to pull over and award myself the mother of the year trophy when she interrupted my apology with, "No mom, I'm not upset. it's just that if your phone didn't ring so much, it would mean that less people were sick".