Friday, May 6, 2016

Waiting for the prick

It’s been 5 days since my CT scan and I’m still enjoying the pleasantries that linger after ingesting bottles worth of contrast dye. I have this weird Pavlovian relationship with the metallic taste in my mouth, and the other effects that are better left undescribed. Unlike so many people who know their bodies well, I feel like me and my body are frenemies. Clearly we are co-dependent, but for reasons that remain a mystery to me, parts of my body take it upon themselves to convince me that there are tumors constantly popping up. 

My body has gotten so good at fooling me, that in the past, I’ve actually seen things that weren’t there. I would take pictures and send them to my oncologist(s), and they’d tell me that everything looked fine. My husband would stand next to me while I pointed at what was clearly raised bruised areas around my mastectomy site, and he’d claim that he didn’t see what was so clearly wrong to me. I chalked it up to low-resolution images and bad lighting.

Angiosarcoma can come back as a subtle persistent bruise, or yellow discoloration of the skin, or a painless mass far away from any nerve endings, or painful lesions in bones, or symptomless tumors in the brain, or inexplicable pain radiating throughout your body.

The chances of recurrence are so high, that when I asked one of my first oncologists if he knew any long term survivors from this disease, he looked at me and stumbled through an explanation of why I needed to think of myself as an n=1 case, and to not compare myself with the statistics. He never did say whether he’d had a patient live into old age, so I’m guessing that the answer was no.

And so the stage has been set for me to become addicted, in some twisted sadistic way, for the prick of the needles that kick off scan day. The blood draws, the contrast injection, that sweet little butterfly that gets taped to my arm, or wrist depending on how hydrated I am. I rely so heavily on this process to either reset or end my sanity.

Unlike some common cancers, there are many times that we, the rare and mysterious, go from scan to scan waiting to see if an anomaly grows before ruling out metastatic growth. I have had numerous scans or MRI’s where a vascular lesion has popped up, usually too small to biopsy, so the only course forward is to wait. Wait for the next prick that will trigger a host of emotions that span the depths of despair, to a timeless sense of gratitude, and everything in between. They call it NED, but it isn’t really, it’s more like No Evidence of SH!T we can Interpret, so I’m going to start calling it NESI.
My oncologist called my a couple hours after my scan on Monday, because he’s a good man, and he understands that I will be frozen in a 2 dimensional pane of glass, so delicate that even a high pitched voice could shatter me until I hear the results.  He asked how I was, and I could tell by his tone, that I was GOOD. After asking him how I should answer, he said, “great, you are great”.  NESI once again.

How bittersweet it is and always will be, no matter how short or long I get to hear those words.  And so it is that I find myself with new resolve to figure as much out as possible while keeping as tight a grip as possible on my mortal coil.  Here’s to the reset, and to the inevitable ramp up until the next prick.

Friday, April 22, 2016

They call me the bag lady

We had just finished digging out the moat for our drizzle castle when she walked by. Bent over, scouring the strand line with a plastic bag in hand, a woman hunched over made her way toward us. I assumed she was collecting shells. My thoughts immediately returned to our castle, and I dipped my hand into the salt water and sand mortar that the girls drug up from the sea to make my first spire.

As the liquid sand slipped down through my fingers, the woman came closer, and muttered something underneath her breath about how we need to save the ocean. The girls looked up at me for clues in order to determine how they should react.

“Are you picking up the trash on the shore line?” I asked. She looked at me, still bent over and said something that resonated so strongly that the look on my face alone was enough to prompt my girls to pop up out of their sandy fun in order to help Anna Lisa save the sea.

“People ask me all the time why I do this, and I look at them and say, because you won’t”.

We didn’t talk much, but rather quietly picked up trash along side her for close to an hour. We listened to her musings about how happy she was to have the girls with her. She taught them all about the history of this stretch of coast, and how what used to turn up sea shells now turned up plastic, and cigarette butts, and sometimes even tooth brushes from the cruise ships that harbored not too far off in the distance.

She talked about the lessons that she had learned over the 60 years that she had been combing this same mile of sand in order to help even one creature in the sea. It was her paradise, and the thought that a ponytail holder could slowly kill a creature that was only trying to grow, was unconscionable to her.

So every day, she would begin her walk in search of  a plastic bag that someone had tossed away from their lives with no concern at all for where it ended up, and she’d begin her 4 hour trek, bent over, looking for the detritus of human life.

The girls felt the immediate reward of helping her. They basked in her praises, not about them, but rather about the good that they were doing. She told them which animals they were helping when they picked up the tiny pieces of plastic, and which ones they saved when they hoisted bigger pieces of debris that would have made it back out to sea if not for their intervention.

When you have a child, you can tell that they’re smiling even if they are facing away from you. There are always hints and clues to their happiness, and for that hour, I could see the raised profile of smiling cheeks that narrowly escaped the contour of their little blond heads as I followed behind picking up trash.

“They call me the bag lady, but I don’t care, I love this place too much”, Anna Lisa said as we neared the jetty where the majority of the trash was deposited by the four wheelers that scrape the surface of the sand for us tourists.

We were nearly finished, when she looked at the girls and said that she wanted them to come back to her cabana in order to pick out their favorite shells. Back before she cleaned the mouth of the ocean for all of us, she would collect the finest shells that the sea would offer up.

The girls were so excited, what a great souvenir for them. I think I was actually more excited than they were. I always tell them to help people, and to not expect anything in return, but to rather enjoy the act in and of itself. And they did. They did what other people wouldn’t do. They warmed the heart  of a stranger. They helped a fraction of a percent of creatures that they’ll never see, and they thoroughly enjoyed every aspect of it.

When we walked into the cabana and saw 60 years worth of the most beautiful shells, and sponges, and coral, and sea fans that Anna Lisa had collected, they were amazed, and excited to pick out their favorites. Maddy held a 2-pound chunk of Coral all the way home, flight and all.


They both learned first hand, that the real reward was the act, in and of itself, of kindness toward a stranger. Now the memories of that day will sit on the windowsill as a reminder of the time they helped an old woman save the ocean.

Saturday, March 26, 2016

Never Been Better

When I wrote the title for this blog, I was completely shattered. Reeling from the words of my oncologist who told me there'd be 'someone else' to raise my 2 and 4 year old children, trying desperately to erase the images of what angiosarcoma looked like in the literature, dizzy from the vertigo that set it after looking down that steep Kaplan-Meyer curve.

I wrote the title in earnest though. I had never been better. I had a great life. I didn't need be smacked in the face by mortality to suddenly realize that I had been taking things for granted. I lived in the moment, which I still to this day believe is the best measure of a life well lived.

I wrote this blog for my family and friends at first, to let them know where in details of a cancer life I was. I carried it on to let my children know how much I loved them. I wanted them to learn the lessons that I thought would take their entire childhoods to impart. It's more important to live well than to live long. Never live in fear.  Help everyone, all the time and don't expect anything in return. Be silly. Follow the golden rule. Be kind to yourself. Do something. Do everything. Never be bored.

It's been six years. And I know without a shadow of doubt that my kids have learned those lessons. Something as simple as an empathetic look when they see someone who needs help, makes me realize that they get it. All of it. All the important lessons that I was told 'someone else' would teach them, are inextricably woven into their world view.

Now, if only I could get my girls to turn off the TV and clean their rooms....







Sunday, February 28, 2016

Jump!

The other night Charly was talking about adding a cartwheel to her beam routine. For those of you without 10 year old little girls in gymnastics, this is a pretty serious undertaking. She doesn’t have to add it, it’s not a required element, but she’s just on the cusp of nailing it every time, and wants to add it anyway. It’s a risk. An unnecessary risk. She asked what we thought, and without hesitation, Ted and I both said, take it! We said it for the same reason. It’s better to try and fail than to never have tried at all. We made sure that we were pushing her sense of spirit rather than her desire to score higher at a meet, and she got it. Completely.

Ted and I met at a drop zone in Northampton packing parachutes.  This was before I dropped out of civilized life to drift around the country in a ¾ ton Chevy conversion camper van for close to a year. I was never much for convention, so when my children, who live in a world far removed from my vagabond ways, take steps into parts of the world that are not a slam dunk guarantee, I smile from ear to ear. Even though I eventually grew up and committed myself wholeheartedly to science, I’m still a risk taker. And for that, I am grateful beyond measure, and will do my best to guide my children toward any path less traveled.

The past six years have been filled with uncertainly. And at the crux of each major decision was an element of risk. Had I taken the safest route at any juncture, I would likely still be toiling away as an 11th year grad student. When I reflect back on the many MANY people who have influenced me since I’ve been on this side of the great cancer divide, there is one person who provided me with such an impactful perspective change by uttering two words, that I think I have him to thank for jumping every time.  

Allan Jacobson, my graduate thesis chair, is a force of nature. Anyone who has met him has likely snorted with laughter and expanded their minds at the same time. Allan was one of the first people that I went to full of pride after our first year at cycle for survival. I went to him because we did it. We did what we never thought we could.  We raised the equivalent to an R01 when we set out to raise a 50K grant. There was going to be legitimate research squarely focused on Angiosarcoma, and in a world where there was once nothing, no hope, no recourse.

Allan looked at me and said, “Now What”.  I was too busy reveling to take a step back and ask that of myself. Now What? Allan said that as great as our accomplishments were, that we needed to focus more than ever on what was next. What a humbling experience to know that there would never be reason to be full of anything except the drive to do more.

I wasn’t going to accomplish “Now What” from my graduate bench. But man was it scary to defend my thesis. I left behind the shelter of an incredible graduate mentor, who provided a safe pace for my mind and my heart. I left behind kick ass insurance. I left behind the type of science that fueled me. It was a risk. A very necessary risk. And when I talked to Ted, it was clear to both of us that I had to take it.


I know, in the deepest recesses of who I am, that I will never attain my ultimate goal, even though I traded in my plastic spoon for a chisel. But I will take every chance that comes my way in order to come one step closer to, “That’s what”.

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.