Sunday, May 17, 2015

Missing Lauren Ryan

It's been almost a year since Lauren died. And I still can't believe she's gone. My partner in this mess, my friend. Things that I'll never forget:

"This sh$t is gone and it ain't never coming back!". She and I both fervently believed her declaration while walking on the freedom trail in Boston in the spring of 2011. 

The day we received our seal from the IRS.

The day we opened our first bank account together. Everyone assumed we were a couple, we never bothered to mention that we were both happily married to men. What did we care.

The day we hunted down and found Alyssa A. at Soan-Kettering. We were with Precious and Ted and were on a mission to find that ray of light. We walked in and sat on her bed hours after she had had massive surgery to try and rebuild her spine. Lauren and I couldn't believe Alyssa was real, she was too good to be real.

The first time we met face to face in NYC. I already knew her. Every part of her. The only thing that was missing was the actual feeling of how strong she could hug, which was the very first thing I learned that day.

The moment we both realized she recurred. She texted me a picture with what was not a rash, or an abrasion, but what we both knew was cutaneous angiosarcoma. We (our small support group at that time) convinced her to fire her doctor who kept arguing that the former scenario's were the cause. She ended up going to Schwartz, who knew immediately, and confirmed within days that it was not her sports bra, but rather this insidious disease that was causing those marks around the site of her mastectomy. 

The day she stepped down as president of Angiosarcoma Awareness.  My heart still aches thinking of her making that decision. She didn't want to let go, but she didn't want to let any one down by not performing up to the standards she had set for herself. FUAS big time for all of it, but that one, truly, that one right there was beyond painful for her.

The day she realized that she changed the world. Lauren struggled for many years to see just how much of an impact she really made in the lives of others. And to some extent, she never accepted how transformative she was. Until the last week of her life. I would sit with her at the hospital reading the flood of texts, and facebook threads and emails that people sent detailing the moments that she helped them. I read to her for hours and never repeated the same message twice. She was completely lucid in those moments, and her eyes. Man, were they open. She smiled so deeply with those eyes that she made me see the bitter sweet beauty of living in a moment of time where pain and gratitude were inextricably interwoven. 

Her funeral. I walked into the parlor while Ted and the girls waited in the car. We were there early and I wasn't sure where we should go. I saw her name above a closed door and walked in to find her wearing her angiosarcoma shirt and bracelets. I knelt beside her and just lost it. Completely. Her lips were sealed shut. Eileen and Lisa walked in and hugged me right out of my grief. The room started to fill to capacity with people from all over the world who had come to pay their respects. At one point, her children and my children knelt beside her and just took it in together. When we left, Maddy told me that it was the "funnest" funeral she had ever been to. Lauren would have loved that. 

Not a day goes by. 






Wednesday, April 29, 2015

Random Vignettes from scan day

Welcome to scanxiety! For those of you who have never been on this ride, keep up the good luck, may you never know first hand the stress of scan day.

I have been experiencing some focal pain in my chest wall and am long overdue for all manner of imaging, so here I am, once again waiting inside of an expanded version of time for a chest/abdominal/pelvic CT scan and a breast MRI.

To all random passers by, I am clearly distraught. My eyes are brick red, my stockings are in my laptop bag instead of on my legs, and I just spent ~ 15 minutes running up and down 8 flights of stairs numerous times looking for my ID, which was dangling from the lanyard in my hands the whole time.

Here are a couple random vignettes from the many hours that have led up to my scans today:

Five years ago, I had set my standards so low after diagnosis. I just wanted to make it until my babies could have an actual memory of me. A real memory. Not a picture that they could see with other peoples words forming their impressions of who I was. But solid memories, choked full of tangibles, like the sound of my laughter, the look in my eyes when I’m proud of them, the smell of my hair when I squeeze them tight, the warmth of my love.

Well, here we are, with all of those memories in spades 5 years later.

Victory!

But not really.

Last month, I was talking to Charly about life and death, and she told me that it will be harder for them if I die now rather than when they were too little to know me. My heart sank right through the floor. I think part of it is still lost in the basement somewhere. We talked about life and death for quite some time after that, and I think and hope very much that I convinced her that it’s way better to have been able to build all of these memories together, regardless of how difficult it would be if this disease sneaks back into our lives and takes me away. I know that she relies on me to be here, what kid doesn’t expect their mom to stay alive? How absolutely wrong for any child to have to contemplate whether it’s better for their parent to die when they are tiny, rather than when they are a little bit bigger. My pathetic bar was set before my children had any say in the matter.

I dropped Charly off at school this morning, and Maddy was talking about how hopeful she is to get into her first after school camp. It’s at the apex of her thoughts right this minute. She is contemplating the many angles of this possible addition into her 7 year old life. Will we know when to pick her up? Will a note go home? If she doesn’t get in, what will happen? Is she a big girl now? What beautiful innocence, wow, breathtaking. Her concerns, juxtaposed to my mortal fear, as I refreshed my phone every 5 minutes waiting to hear back from my oncologists office with details of my scans, left me realizing that I’m not even close to being done. They are at a critical phase in development right now. I want to set that bar so high, without regard to how hard it will hurt if I crash and burn trying to reach it.

Time through the eyes of a cancer patient waiting for a scan: I have never allowed myself to fantasize about the major milestones in my childrens lives. I just take, with gratitude, all that I am allowed be here for. But I desperately want to be there for their first date,  their first track meet, their middle school graduation, and all the other accomplishments, disappointments, heartbreaks, trivial or huge, that they will experience all the way up until I’m taken away by anything other than angiosarcoma. I can’t even bring myself to think about their high school graduations, their weddings, their children..I guess no matter how hard I try, that bar can’t be nudged more than a couple of years out.


Waiting for results on scan day: This is more a rant than anything else, and I know people in other countries who have waited for up to 6 weeks for scan results. 6 WEEKS. Those results were completely obsolete by the time they were received. So as much as I may complain in the following paragraph, I am at the same time aware of how incredibly lucky I am to have cancer in the greater Boston area with outstanding resources and a team that will go to bat for me on the drop of a dime. Now then: HOW on earth can any one in the field of oncology think it’s ok to make patients wait for scan results? I don’t know anyone who would rather wait for an in person reading of their results rather than find out as soon as possible. Not one person. In fact, I know an oncologist, who after receiving a cancer diagnosis, immediately understood this one fact: WE DON’T WANT TO WAIT to know our fate.  Knowing that the films will be read by the radiologist and filed neatly away on multiple hard drives but not accessible to me, the biggest stakeholder in this, is infuriating.

I made a tearful plea to my team, who is filling in for my oncologist today, letting them know that for the past 5 years, I have always been able to call  the day of my scans to receive the results. I think they took pity on me after I muddled my way through an explanation of what it’s like to be sitting in the middle of scanxiety.

Why I love my job: The only thing that makes this even a little ok is knowing that the people I work now, with will figure this out. Whether it happens in my lifetime, or after, these are the folks who will figure it out for humanity.

I know that impending scans gives me temporary tunnel vision, but It’s not about me folks, it’s about every single one of us. It’s not just about my children, it’s about everyone’s kids. And it’s not felt by any one of us alone, it’s also felt deeply by so many people who are in this to fix it for us. I cannot overstate how important it is for all of us to rally behind great scientific initiatives, no matter what state of living or dying we are in. There are genuine humanitarians who are brilliant and capable, and they will turn what I am experiencing right now into something that will only live on in blogs and other lore. But it’s up to all of us to do our part, to help in every way that we can, and in as selfless a manner as possible. No more worrying about where any one of us stand on the tiny pillars of life that we perceive around us. We will only prevail if we drop everything and come together.


OK, off for my first of two scans….

Sunday, April 12, 2015

What can you do to help metastatic breast cancer patients?

I do not have any answers for the questions that I will pose below, but I have fingers that can type and a heart that can feel. I am working with a group of genomics researchers right now on a metastatic breast cancer project and fervently believe that this research WILL make a huge difference in our understanding of metastatic breast cancer, and that new ways of treating this disease will be developed as a result of this research, and that people with metastatic breast cancer will benefit from all of our efforts. I know that research must be done if the statistics that haven’t changed for the past ~ 30 years are ever going to shift in the direction of living longer with metastatic disease. And if we, as researchers, ever want to be equipped with the data to back up claims of cures, then we MUST focus on understanding metastatic disease on a level that is fathoms deeper than what we understand now. It will take time, dedication, and a whole bunch of smart people (patients + doctors + researchers + advocates together).  But, that first requirement is something that many people simply do not have, which makes this an untenable situation.


I just spent some time at the Living Beyond Breast Cancer Conference in Philadelphia in order to meet patients and advocates. I went to listen and to learn. And what I saw was fierce conviction in the eyes of metastatic patients. And what I heard was the voices of people who are facing their mortality and demanding not only that others do more, but that others help THEM do more. I heard that same sentiment take multiple forms. And although I have no answers, I can at the very least let anyone who opens this blog know that there is an immediate need. Right this second. If you are someone with answers, perhaps you can spread your thoughts all over social media so that your voice and your ideas can be heard. 


Everyone recognized that research must be funded (groups like METAvivor are 100% dedicated to funding research that squarely focuses on metastatic breast cancer research). There was no doubt in anyone’s mind that we need to focus on research, the patients get it, we researchers get it, the advocacy groups get it. Completely. But what was striking to me was that in addition to funding, there is a need to figure out what else can patients do about the now. The right now that’s full of patients who want to live and who can not wait for the research that will yield results sometime down the road.  What can they do in the right this second that’s chocked full of metastatic breast cancer patients who look around in a room full of other patients and advocates and researchers and drug manufacturers and say, “What about me?”,   “What about me right now living with this disease?”, “Surely there is something that I can do to help!”, “I'd like a how to guide for how to advocate, I don't want to die, at least not yet”, “I come to conferences, but I want to do more”, “What can we do from our desks... the cause is not dying, and not dying soon”.


As I focus on the obvious ways to try and make a difference, the research, I would love love love to hear from people that can help with the questions that I clearly can not answer. I will work on the science, and I will do everything I can to build awareness so that people outside of the metastatic community can gain a better understanding. I will ask for help from complete strangers who might have answers (like you, if you happened across this blog on social media for example), or at least directions to pursue so that the truly hard questions can be heard by as many people as possible. It’s Sunday morning at 10:26, and soon I’ll be putting my scientist hat back on to try and understand what is happening on a molecular level with respect to metastatic breast cancer. But right this second the only thing I can think of to try and help is  to ask the same questions I just heard to you. Do you have any answers?

Thursday, April 9, 2015

Walking away from a K99 and why we should fund biomedical research

I would like to preface this by stating explicitly that I love science, truly. I have nothing but respect and gratitude for my PhD advisor, and my postdoctoral funding agency. I look around me every day and see fantastically gifted individuals generating the leading edge of human knowledge, and am proud that I even get to walk the halls with them. I know that scientists have made remarkable and unprecedented discoveries as a result of the very system that I am going to rail against for a bit. And in no way do I think that we should stop funding academic medicine, quite the contrary, I feel very strongly that we need to put a TON more money into the NIH.  I think the majority of the gripes I have are a direct result of a dearth in scientific funding, and that if we don’t focus some attention on the need for more funding some of the stark realities listed below could jeopardize one of the only means that we as a species have come up with so far for understanding life, disease and everything in between.  Also, take what I’m about to say with a grain of salt, these are generalizations, I was very fortunate and never had financial issues throughout my academic career, was lucky enough to secure grants and had a clear path toward securing a tenure track position when I decided to leave. Now that I have listed my disclaimers…

When I decided to go to graduate school for biochemistry, I had the following discussion with my husband:

“I’ll get my PhD, and then I’ll get a job to support you if you want to go back to school to get yours.”

I can literally hear those of you on the reading side of this post chuckling at the na├»ve assumptions of me as a fledgling scientist. 

For those of you in unrelated fields, scientists don’t make money. At least not for the first ~ 20 years of their career.  Should you choose an academic career, there’s undergrad, where you rack up the bills, then graduate school, where you are hovering around the poverty line, then comes the postdoc(s). The parentheses are there to highlight the fact that many people are stuck in a forever form of science slavery. It’s like the wild west of science, no laws, no oversight, no rules, no exit, other than publish and publish well, or else you’re stuck in postdoc purgatory making less than half  the salary of an average Mass Pike Toll Collector II (citation: http://www.masslive.com/news/index.ssf/2012/03/massachusetts_transportation_p.html) . If you do make it out with a high impact paper, only then can you have a career that allows you to think about buying a used car with 20K miles on it instead of 120K miles on it.  But if that career plan entails becoming a PI (principal Investigator, or boss if you will) then those 20 years of fierce competition and strategic planning only provide you with a <8% chance of getting that highly coveted faculty position  (citation: http://ascb.org/where-will-a-biology-phd-take-you/)  If after all this training, you do make it, your chances of failing after landing a tenured track position are astronomical.  Only the top 14.8% of R01 grants through the NCI were funded in 2014 (citation: http://www.report.nih.gov/success_rates/index.aspx).  R01 grants are the bread and butter of a solvent and successful research lab. Without one, your tenure chances are shot, your ability to recruit and pay for the grad students and postdocs that will populate your lab for 20 years is limited and you end up looking for another school to try and salvage your scientific aspirations, or you are forced into another career.  The NIH does give first timers a break, which helps bridge those first critical years toward tenure, but then you get a pool of young PI’s with tenure going after a smaller pot of money. How does this make sense? (Please fund the NIH more humans!)

Isn’t it sad that my focus here has been on money money money? Money that young scientists don’t make for themselves, money that scientists compete for to fund their ideas. Money that is diminishing and leading to a scary situation for many people who once upon a time thought they were getting into this to  generate discoveries, not papers that will look good in the next bibliography of a grant proposal. (This could be different if we funded the NIH more)

It’s not pretty folks, and it’s not healthy either. But it’s also very much accepted as “it is what it is” by many people, myself included until a few months ago.  I only recently really started to think critically about the pursuit of an academic career.  And when I asked myself the following question, it became clear to me that I needed to get out: 

“Will I have an actual impact in cancer research if I have my own lab?”

Now, this is a very different question than, “Will I be able to publish well on my project?”, or, “Will I land a job at a prestigious institute?” or, “How many papers will I need to secure tenure and an R01?” or “Who can I collaborate with in order to get a higher impact paper?”. 

When I went back to that first question, the answer was no. Regardless of how giant a “yes” I might be able to pull off for all the subsequent questions that followed, they would serve more to advance my career rather than to make a true impact. 

After careful consideration, I found myself at a crossroads, and decided to take the path that didn’t exist. I walked away from a five year million dollar grant (K99/R00) that would have paid for my transition into being a tenure track PI. I loved writing the grant. I loved the science, the figures, the figure legends, the pitfalls, the alternative ways to answer each question. I loved everything about it except for the system in which I would not thrive as an independent thinker should I accept it. I didn’t even wait to see how it scored when I made the decision to walk away. I hit submit and started looking for jobs the next day. I didn’t know it at the time, but the grant scored very well. A couple of weeks ago, my program officer went through all the scenario’s through which I could still accept it. But it was too late, I had already made my peace with leaving academia. 


I feel extremely fortunate to have jumped off of the ship with nothing more than blind faith and to have landed on my feet. Will I make an impact outside of the lab? I don’t know, but I have hope. So much so that I get misty eyed on a daily basis. Will I have an impact? Don’t look in the literature for my name. If I have any at all it’ll rest as smiles on the faces of people I’ll never meet. 

Monday, April 6, 2015

A year of cancer on papers

I have a red Whole Foods Market hot and cold bag that is neatly packed with the medical records from my first year of cancer. Somehow knowing that the papers, which describe my chemical foray into the world of cancer, are insulated in the same tote that would keep my organic eggs fresh is fitting. Last night, I blindly dug into the recesses of our never used hallway closet until I felt the thick cloth handles of my cancer bag. I pulled it out. I unzipped the red zipper and when I peeked inside, I found a past that I had zero recollection of.

One scrap of paper said that I had a scan on Thursday but that I needed to get my pathology reports and slides sent from another institution first.  I had scribbled a fax number and the name Catherine in light teal crayon. Another scrap had the names of oncologists that I know very well now, but who, at that time, were just a collection of consonants and vowels followed by an M and a D. On the same piece of paper, I had written for the first time, “angiosarcoma, radical mastectomy”. 

There were entire binders from Dana Farber, Mass General Hospital, Sloan-Kettering, Umass all welcoming me with information information and more information. SO MUCH INFORMATION on pieces of paper that I would never read. There are bills intermingled with path reports sitting on top of blood work that is layered in between scan results. An abstraction of my life, the very essence of my mortal fiber, started to take form from a two-dimensional beginning.


Over that first year, I accumulated more paper than inches of snow in an average Boston January. I measured the stack, which tipped 12 inches. I carried it to my scale, 25.7 pounds. That’s a lot of extra weight to being carrying around all of these years.  If nothing else, I have the kindling for a nice fire that could warm the neighborhood should spring decide to sneak away.    

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.