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!