Monday, January 25, 2016

Things time can't heal

I'm sitting in our new breakfast nook, wrapped up in a fluffy brown fleece blanket while basking in the warm winter sun filtering through the double-wide bay window in my kitchen.  I just kissed my babies goodbye and watched them walk briskly to the bus at the end of our drive way. Before they left, they were singing spontaneously again. I can think of no better measure for happiness than the sound of a child bursting into song. It's a sound we hear often, and for that, I'm beyond grateful.

Life is good. Really good. I am acutely aware that I need to embrace these fleeting moments, but I'm finding it difficult to let go of the past in order to be fully present.

We moved a couple of weeks ago, and with any major life change, there will always be unforeseen struggles, even in the midst of a seemingly seamless transition. One of the resounding thoughts that I had while we were gearing up to move was that we effectively bookended the girls childhood. No matter what happens, their foundation is as thick as the poured concrete that has helped our old house stand steady since 1922.

I brought them home from the hospital to 6 Gannett street. I watched them take their first steps on floors that now support other peoples daily strides. We measured their tiny bodies as they grew little by little, on the archway between rooms that others will likely paint over. Their first utterances, their last diapers, birthday cakes, report cards and countless other milestones will always be there. All of the words that were so tough to read, eventually rolled off their tongues after many years of reading while snuggling in beds that are now in a different home.

As I sit here racking my brain to try and understand the uneasiness that I feel, the only thing that I can come up with, is that I will always be broken. There are some things that time can not budge. Beyond the fear and anxiety that has become almost routine as I take each step down a Kaplan-Meier curve, are the wounds that never seem to heal.

I see a picture of one of my many loves, and I'm dragged back into the insanity of their hospital rooms. Without going into detail, suffice it to say that I will always be there, looking into their eyes for the last time, trying desperately to hold them as they slip through so many hands locked in a futile grip.

Life is good, it couldn't be better. I've never been better. But I've also been steeped in so much sadness, that even a simple ray of light warming my back brings me to an instance in time when life was terrible for someone I love. I guess that our move made me hyper-aware of feelings that I had become accustomed to. When cast in the light of a new back drop, I guess I can see crystal clear how deep those wounds really are. Time has done many things, but it hasn't magically healed me. But, I am grateful for every moment that I get to spend here contemplating it!



Sunday, December 13, 2015

URGENCY


I sat in a row beside metastatic breast cancer patients and advocates, and watched cutting edge results being presented at the San Antonio Breast Cancer Symposium last week. They were taking it all in, trying to understand everything from the details of the science to the details of the clinical trials. This particular session wasn’t hard to interpret. You certainly didn’t need an advanced degree to see that there was no difference between the survival curves of the investigational drugs that were being described versus the standard of care. Not only was there no change in these curves, there’s been no change in the mortality rate for people with metastatic breast cancer for decades.

DECADES of awareness, and research, of publications and seminars, of symposiums and conferences. Decades of career advancement and pats on the back. Decades of Champaign bottles uncorked at thesis defenses, and dinners out to celebrate successful grant applications. Decades of reviews, and study groups. Decades that have resulted in no change in mortality? How is that even possible? 

In non-cancer lives, this is more than a generation of effort that has yielded no change in the needle. In metastatic breast cancer lives, where the average life span is ~ 3 years, this is over 10 generations of lives lost.


I know what it’s like to track your own mortality along a Kaplan-Meier curve. I watched as my friends saw in dual screen, that they are still looking down that steep curve with nothing to intervene as they are forced down that slope. My heart was broken into tiny little pieces, for them, and for all of us. If we haven’t been able to figure out how to properly treat a population of people who comprise a large fraction of the cancer gestalt by now, then when? That is one of many outstanding questions that I hear from my many friends in the MBC community. When.

People with MBC have been told for decades that they just need to wait a little longer, that research is slow, but that things are changing. As someone who walks the line between research and advocacy, I can see crystal clear, many of the factors that are impeding progress. We have an infrastructure that promotes career development over collaborative  scientific endeavors. My experiences are in the space of academic medicine, so I can’t speak to anything related to industry, but from my side of the bench, I have been deeply disturbed by the way we publish, to the way we promote junior investigators, all the way through tenure. I was a link in this chain for 15 years before I decided to jump ship.

I have seen postdocs in the same lab not aware of each others research because they are so protective over their impending publications, that they don’t want their colleagues to scoop them. I have seen data sculpted into the best possible papers, but not the best possible science. I have seen people, myself included, chose topics to write grants for because they are sexy and have a better shot of getting funded rather then write for what is truly in their hearts. I have pat my friends on the back for their papers, for their grants, for their great successes, all the while, the people who are they greatest sake holders are dying by the droves. 


Until every researcher, every study group, every granting agency understands the sense of urgency that patients feel about their research, the status quo will reign. I would love if we could sober up, take a look at the reality of our collective ineffectiveness and chart a swift course toward some impactful research. I know that the work I’m involved with is tacking in the right direction, and I hope very much to help generate data ASAP. But I will hold off on any hyperbole, on any pats on any backs and on easing up on my sense of urgency until there is something to actually celebrate.

Saturday, August 22, 2015

Our Girl


Her husband reached out to us and said, “Tell me anything about “our girl”.

Maybe if we each typed a memory of how profoundly she has impacted us, it would somehow shake the universe hard enough to wake her up.

And so we did. In our little group of 9 friends, we generated the outline of a super human. We started with the accomplishments that would make everyone other than her take a step back and marvel. She was a star tennis player, she was a magnificent pianist, she was a brilliant scientist (still is!). Her ability to contribute to the world is not only multifaceted, but it is steeped in such a sense of humbleness that some of us didn’t even know that she had ever picked up a racket, or tickled the ivory.  And we each know her very well. But what she chose to share with us, was not the great accomplishments that other people would use to judge the worth of her life, but rather seemingly insignificant moments to any outsider.

Our girl is silly to the core. If there is an opportunity to laugh, she will take it. In line with our text, her husband sent us a reminder of silliness in it’s purest form. A picture of our girl using the lines of her IV to try and make plastic mustaches when she was too sick to talk. Even though she couldn’t produce words, she could still giggle.

What? Who does this in the midst of agonizing pain?

I already knew the answer as I was asking these questions to myself. Someone who doesn’t think they’re suffering. Someone who knows that they are sitting in a moment of time with the opportunity to make someone else smile. Someone who made a choice long ago that other people’s happiness trumps all. Simply put? The most selfless person I have ever met.

I may not know which songs she has mastered on the keyboard, but I know without a shadow of a doubt that she can’t pass a stranger on the street without thinking, “I hope they are having a beautiful life”. What a spectacular way to go through this world. 


These words don’t even scratch the surface. There's no way to arrange a series of words to describe completely such a profound person. But I’m hoping so badly that they can help her husband take shelter inside of a reflection of our girl.

Monday, June 15, 2015

Shamelessly hijacking #DistractinglySexy for my own biomedical purposes

My apologies up front to the many people who are involved in the wide spectrum of conversations that are playing out in social media as a result of Tim Hunts recent comments: (https://www.bostonglobe.com/metro/2015/06/10/comments-girls-science-highlight-persistent-gap-field/nBC9jPpvnYGCnzLYbCBEhJ/story.html). I apologize because I am going to hijack #DistractinglySexy with “other than gender” related issues that are starving for attention in the world of biomedical science.  The issues that I’m concerned with are not at all sexy. In fact, they are at the nadir of any lusty science related conversations. But right underneath the hashtag threshold, lies a very unhealthy biomedical ecosystem that is in desperate need for a meme, or some controversy that will bring as robust a reaction as that sentence or two from the forlorn Dr. Hunt.

I am going out on a limb here, but I bet the majority of people who don’t work in a lab are not familiar with the way that many biomedical scientists choose a field of study. My personal observations have led to the following 5 simple questions that need to be addressed in the funding cycle of an average American lab (Disclosure: I’ve only had ~ 15 years of experience in a hand full of labs, so take this as a peek through a small window of one scientists experiences):

1) First things first, what am I interested in?
a.     It needs to affect a large enough swath of people to be considered fundable.
b.     It needs to be sexy. Not gender sexy, but NSC sexy (Nature, Science, Cell). In other words, have some hint that if you knock it out of the ball park, you’ll be able to publish your work in a top tier journal. There is a sad truth that is being acknowledged as we speak, lots and I mean LOTS of science is not reproducible. But alas, if it’s published in a top journal, the scientist is one step closer to getting funded. I will not elaborate further, this is in and of itself the topic of numerous reports, here’s a hint: http://www.nature.com/news/reproducibility-1.17552
2) Are there avenues to fund the studies needed to address my area of interest?
a.      If no, study a different subject (This is why I studied melanoma and not angiosarcoma as a postdoc. Living proof right here)
b.     If Yes, move on to question # 3
3) Do I already have enough data to prove that I can unequivocally publish work focused on my area of interest?
a.     If no, produce more data before writing for a grant to fund work you’ve already done
b.      If yes, move on to question #4
4) How can I get the most money by proposing to do work that I’ve already done?
a.     This applies to scientists at all stages of their careers. It’s all about the preliminary data. In other words, you need data to propose in your grant in order to prove that you will be successful in obtaining the data that you already have. Fun little cycle right?
b.     Hold some preliminary data back for the resubmission. If you don’t score well on a grant, you can often resubmit. If you can show that you have the ability to produce the data you are proposing to do by showing even more data that you are proposing, you could increase your chances of getting that grant. The beauty of holding back data is that you can slip it into the resubmission in a timely manner.
5) Perform research on a different topic than what you were funded to perform.
a.       Since you already have the data that you proposed to generate, once funded, many scientists pick up an entirely different project that is sometimes not even related to what they are funded to perform.
b.       Use the preliminary data that was generated after you obtained funding from your original grant to write for a different grant.  Return to step #3 and repeat until you stop publishing in top tier journals.

Questions for those outside the lab: A) Does this make any sense? B) Do you think this is the most efficient way to develop the knowledge base that we as a species need to develop in order to cure disease? C) Could there be a better way?

My 2 cents:
A) Yes. Here’s me working through the problem with my pragmatic hat on. With money dwindling from the NIH’s coffers, reviewers needs to be incredibly strict with the money they dole out. If you were the one reviewing a slew of grants, would you be more likely to give tax payer dollars to the grant that seems risky, might only help a handful of people (even if executed perfectly) and has scant data to support the aims, or would you be more inclined to give that money to someone who has data to convince you that they are able to produce solid publishable data on a topic that will help more people, ie, people who are hit by the diseases with the most prevalence.

What a conundrum. And man does it hurt to be on the David side of this battle as a patient with an exceedingly rare disease. I took stock of the landscape of biomedical research as a grad student and chose a sexy field of fundable science. It worked. But I left because I was convinced that I could do more with the little rock that I had in my hand other than tossing it up in the air while day dreaming.

B) Absolutely not. Think about it. Every lab needs to establish an independent area of expertise. To publish, you need to discover or describe something that no one else has figured out. Think that happens by scientists talking openly and collaboratively about their ideas? Nope. At least not in traditional academic medicine. You only need to know one word to understand why: Scoop. You can get scooped by scientists who hear about your unpublished work at conferences, by word of mouth, by “collaborators”, by reviewers who are reading your manuscript (by far the most nefarious).  Best way to not get scooped? Work in a little silo and keep your data SECRET until publication.

C) Yes! Here’s the good news. There are huge collaborative efforts that are aimed at generating massive data sets for all scientists to learn from. Here’s how it works: You need a group of scientists who are willing to work in total collaboration, no walls. These scientists need to extract themselves from the traditional academic career track. They have to commit to producing data that in and of itself might not produce sexy little papers, but rather rotund & meaty data sets that anyone can look at with their own unique perspective. These scientists need to be funded and funded well. This can and does happen through visionary philanthropists who understand the conundrum outlined in “2 cents section A”. 

Is there a better way? Absolutely. And I believe fervently that it will enable a radical shift in the 5 step cycle of funding for the average American lab. Imagine what would happen if there was ample preliminary data for all scientists to share. Those scientists could write grants based on their ability to synthesize the most amount of information based on a robust and shared knowledge base.  There is definitely a better way, and as a patient and scientist looking up at Goliath, I know without a shadow of a doubt that my tiny rock can be lodged with great velocity through collaborative scientific efforts.

Ok, back to the topic de jour… May all of us work together harmoniously, tears, no tears, male, female, every race, every creed, every color, every single one of us.







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….