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".





Sunday, December 28, 2014

Confessions from a fledgling patient scientist

Boy was I naive when I went in for my first "after the dust had settled" appointment with my new oncologist. It was almost 5 years ago in human years, but really it's been 34 in surviving a catastrophic cancer years. When I look back on that initial appointment, I can't help but think, "what just happened there".

Naive assumption #1, My oncologists would know everything about my especially rare, I mean not even 30 seconds on the grill rare, cancer. He WAS a sarcoma specialist at Harvard for goodness sake, clearly he is omniscient. So when I went in loaded with papers freshly printed from pubmed, with information down to the impact factor in the literature, I was shocked that he hadn't already read them. Come to find out that (with many exceptions!) PhD's and MD's approach medicine a little differently. Being in a lab, not seeing patients kind of frees up the time to scour the literature. Having only one of the hundreds of sarcoma subtypes probably also made it a bit easier to stay current on my particular flavor of this disease. Not actually treating patients and being trained to understand the conformational changes required for tyrosine kinase inhibitors to function maybe made the literature an easier read too. But man, what a shock. I now know many MD's and MD, PhD's who are as comfortable with the lit as the academics who are publishing the basic science. In fact, at my last appointment with my oncologist, he was citing the literature to me..brought a smile to my face, a big giant smile --> :) see?

Naive assumption #2, My oncologists would know how to treat me. Not the case, and not their fault. But that was not a very tractable version of reality back then. I get it now, and try and help newly diagnosed patients try and wrap their minds around the this seemingly simple but depressing fact: There are not enough of us to generate the data necessary to formally know how to treat us. We now try and refer as many patients as possible to a handful of sarcoma specialists so that they can at the very least develop as much anecdotal evidence as possible on angiosarcoma, and it's working. There is now some bonafide expertise in the world!

Naive assumption #3, I would go to the doctor and they would handle everything. Ha. Hahahahahaha. This one needs some work folks. No patient should have to jump through hoops to chase their medical records. I was in shock, literally, from the diagnosis. "Pick up the phone, dial numbers, ask for scans.." Seems pretty easy now, but I was stuck on "pick up the phone" for so long that I missed appointments, brought the wrong records, lost files, and contemplated sucking my thumb instead. I would love love love to hear from people on this disparity. The more ideas the better, someone please have ideas?!?

So, after 34 survivor years, I feel like I'm better equipped to handle my appointments. Maybe more importantly, so are my oncologists:)

Friday, December 26, 2014

Long term grief..in it's happiest form

I promise, this will not be a depressing blogpost. Promise. But, it will take some effort on your part to see it that way. What might need some serious work on your end is to understand that expressing grief is not necessarily something that should make you feel pity. Those of us dealing with tragedy on a daily basis need to let go through writing, crying, talking, venting, and by any means possible in order to maintain our sanity. So there it is, by reading this, you are taking part in the process of keeping us balanced as we try and maintain as strong a tie possible to our mortal coil. See, so far so good, right?

Let's face it, cancer sucks, truly. I feel like I've been lined up against the wall with a group of randomly selected strangers, blindfolded and and left to wait. Indefinitely. The strength of the bonds that are formed between those of us who have never seen each other is indescribable, so I won't even bother. Suffice it to say that when a shot is fired, it may as well take us all down at once. I have held the hand of so many people as they've fallen, and every time, I go down and stay down right there with them. 

Over the years, I've offered the same platitudes to myself that people often utter when they should really just say nothing at all. "Time will heal...They are no longer suffering...Kids are resilient, they will be fine....They are no longer suffering...They are no longer suffering..They are no longer.

But really, the only thing that's helped so far is to just give in to the grief, have a good cry and move on until the next wave hits. I told myself after the first year of advocacy that I wouldn't let them in any more. I would put hurricane shutters on all the windows and keep more than an arms distance between myself anyone else thrown in line. Right. Want to know what happened? All the walls came down. I was a fool to think that I could magically not feel the magnitude to their pain, and that of their family and everyone who loves them. Cancer sucks. truly.

Wondering how on earth this is not going to be a depressing blogpost? Ok, alright, maybe I lied a tiny bit. Maybe it's a little sad. But maybe this will help. A couple years ago, when my friend Alyssa Acquafredda died, I made a commitment to myself that I would try and incorporate her amazing perspective into my own life, and by that way, I could honor her always. It changed me forever. Alyssa was the most forgiving person I have ever met. I'm certainly not there..not even close, but I try daily, and when I do, I remember her with a smile instead of a tear. I now do this with everyone I meet, healthy, sick, alive or no longer with us, I try and learn as much as I can about how to live a better life. It helps tremendously that everyone has something to offer, new insight, better ways of handling the happy and sad parts of life. 

I might fall every single time, but I'm landing on a different platform, one that is made up by the very best that life has to offer. Years of grieving has left an indelible mark on every single thought that passes through my brain, but it's not necessarily a sad thing, nor one that should elicit pity. I feel honored to know each of my partners in this world and will continue to learn how to live more fully with each new relationship that I am given the opportunity to be part of.





Tuesday, December 23, 2014

Think bigger while staying true to our cause


“So, what are you going to do about it? You are thinking so small” said the voice on the other end of the line.

What am I going to do about it? Think bigger I guess!

For starters, I suppose I should tell everyone I know what I think IT is. IT is the hurdle that those of us with exceedingly rare cancers face when we try to champion our diseases. IT is the lack of power that we have after we take off the blinders and see that our tremendous efforts only lead to a tiny dent in the armor of the biomedical and pharma establishment. IT is the lack of collaboration that we are all guilty of as we focus only on our own indication.

I for one am happy to admit that I am part of the problem. Since my diagnosis with an exceedingly rare cancer 4.5 years ago, I have lived and breathed angiosarcoma. Got angio? Talk to me. Want to research angio? I’m your girl. Need support, I’m here to help. And it’s not just me. We have a flourishing support group with thousands of people who offer every single part of themselves in our collective fight..against angio.. And here’s the kicker, I wouldn’t change a thing, even as I rack my brains to come up with bigger and better thoughts.

So how do we resolve these seemingly disparate initiatives? How can we maintain our identity while becoming part of a larger more powerful lobby (for lack of a better, more meaningful word). I don’t have the answers, but I am willing to throw some ideas into the ring. Maybe by opening up a dialogue with anyone else who is willing to talk, we can come up with innovative ideas that could lead to meaningful reform that would benefit more people with rare cancers.

Here are some thought’s to get the ball rolling:

Find the areas in research where everyone wins if we come together and fund cross-indication large-scale endeavors. Recent technological breakthroughs and success in cross indication trials have underscored the fact that there is a new paradigm in the world of cancer research. The walls are coming down, and in their place will be remnants of borders left on path slides. We will be defined by the genetic mutations in our tumors, and the biomarkers that indicate whether we are likely to respond to targeted therapies and immunotherapies.
But, we will need quite a bit of translational research that no one will fund but ourselves. Want strength in numbers? Fund genomics and biomarker initiatives that span ALL sarcoma sub-types, or better yet, all rare cancer subtypes. Have foundations that are focusing on individual grants to this effect chip in for institute wide studies. There’s power in numbers here, not only statistical, but financial. We will all win if a bunch of us put small grants together for the same research study. And we can do this while maintaining our autonomy. If we as a group fund a 25k angiosarcoma genomics study at MDA, we will get a few tumors sequenced, we may find out what genetic drivers are part of the incredibly complex puzzle that drives our disease. However, if we as a group put that same 25k into a study with 10 other groups, those same few angiosarcoma tumors could still get sequenced along side tumors from other subtypes. Trends could pop out that would never be found without the statistics that larger-scale studies afford. Better papers will get published, more researchers will take notice, oncologists might find more avenues that are druggable. And the best part is, so many more people will benefit.

I’d love to hear some other ideas. I’m also up for a candid discussion about why my ideas might not resonate. All thought’s are welcome!