Saturday, February 15, 2020

The Angiosarcoma Project in print; discoveries from our patient-partnered research

In a rather surreal twist of fate, we wrote a paper published in Nature Medicine detailing discoveries that we made through our patient-partnered research, the Angiosarcoma Project (ASCproject.org).
Click here to read!

Friday, December 23, 2016

Mothering through the trenches of mortality

There’s a sentence in one of Maddy’s favorite children’s books that promises mamma will come back at the end of the day, and no matter how sad little Llama gets, it’s all going to be ok, because he’ll be swept up into her loving arms if he just perseveres. That sentence used to gut me, and every time Maddy would bring me that book, I knew I had to fight back tears just to get through the watercolor pages that described a Llama’s first day at school.

It seemed like everywhere I turned, there were books, and songs, and TV shows that promised kids their mom’s would always come back for them, no matter what. She was 2 when I was diagnosed and I was sure that I wouldn’t  make it through her early childhood. I knew that one day I would leave and never come back. Trying to mother through the weight of that darkness was unbearable, truly. I don’t think we’ve evolved mechanisms to handle intense grief. And when you’re on the side of grieving that has a definitive end, platitudes like, ‘time heals all’ turn into verbal daggers.

That was 6 long years ago.  6 years of my children’s lives that I was part of. 6 years that I helped create. 6 years of hugs, unyielding innocence, unicorn magic, reindeer footprints, report cards, lost teeth and countless other milestones that I may otherwise have taken for granted if I wasn’t constantly checking every bruise for malignant spreading. I hear parents lament the growth of their babies, wishing so badly that they would stay little forever. Not me. I cherish their independence like no other. Charly can cook, bake, paint, do basically everything an adult can do except maybe spontaneously clean her room, and Maddy is well on her way to having all the life skills she’ll need to be a strong and independent woman.

I said once early on that my biggest wish, the wish I’d trade all others in for, was to be here long enough for my children to want me, but to not need me. Well friends, we made it. They’re 11 and 9. They know who they are. They know who I am. They know the golden rule, and they follow it. They spontaneously sing, and are kind to people. They recognize when others need help and jump in like it was baked into the fiber of how all should act. It certainly helps me grip more tightly, the sheer cliff of anxiety that I’ve been clinging to for the better part of the last decade, while at the same time makes me acutely aware of all that my young friends with terminal cancer are facing. No one should have their hopes ripped away from them like light at the event horizon, when all they’re trying to do is read to their babies.

I asked Maddy to grab a book and read it to me the other night. She came down with Llama Llama misses Momma. It had been years since that book crossed our laps. This time though, Maddy read it to me. She wrapped the blanket around us both, snuggled into my arms, opened the book and read it as though I was hers to take care of. The book brought a warm smile to my face instead of an intense sense of emptiness to my heart. I spent that precious moment envisioning her as a mother. It was the first time I allowed myself the luxury of peering into either of my children’s futures. It didn't occur to me until now that after all this time, I finally let myself fantasize about the lives they may have. I can see them smiling in my crystal ball without having to be there. I know they want me, but I know for sure that they already have what they need. 




Saturday, October 22, 2016

What breaks me (Warning, seriously depressing blogpost)


I told someone at dinner last night that I cry at least once a day. I think it took them by surprise, which took me by surprise. I have no formal training in despair, but man do I feel like I should have a key to the city. I’m sharing this post, because it’s become increasingly clear to me that I’m not alone. There are other patients and advocates who face impossible situations and loose their minds a little bit at a time, or all together every time the silence hits. I’m sharing this because it’s so hard to talk about. I actually can’t talk about it. I can’t get through the first sentence in the following paragraph without completely breaking down. I’m sharing this because I believe with everything that I am that it’s ok to be broken, that you can’t always be fixed, but that you can still move forward, no matter what.

This is what breaks me:

That time when I skyped with a dying child trying to give her hope when she couldn’t even move her head to face the computer screen. Massaging Laurens swollen legs as she lay in bitter pain days before she died. Reading a facebook message that my friend had died and left her daughter who was also dying. The daughters funeral. The phone call from a frantic stepdad who needed his dying wife to live so that their 8 year old daughter didn’t go back to her abusive father after his wife died. That text from my young dying friend that her kid brother died. All of the parents who lost their babies. Even if their babies were grown. But oh my god, the young ones. All of the cancer parents who had to look at their children’s faces with dying eyes. Knowing more then one family that lost two children within a year of each other. Eating dinner with a friend who lost his wife, and hearing how her ear fell off in front of him as angiosarcoma ate her face away.  All of the people who held so tightly to hope that their fingers bled.


There are countless others, each just as devastating. There are no words to make any of it ok. None. I think we shield ourselves so desperately from death that we’ve never developed the right words to even speak about it.  So when I talk with my friends who are loosing their minds, all I can say is that I understand. I can give them hugs. I can shed tears with them. I can try and fail to let go with them.  I can stamp these words into the ethersphere in order to talk, even when I can’t with my voice. I can try and let them know that they are not alone as they break and that I'll help them collect the shards of glass in the aftermath. 

We may cry every single day because we know that we are helpless when tragedy brushes up against us, but I'll tell you what, I wouldn't have it any other way. And neither would my friends who get this completely.

Here's to life, health, and happiness, and in all other times to kleenex. 




Friday, September 23, 2016

Rising Up To The Challenge of Elvira

We would meet in the parking lot of Wheaton Woods pool and decorate our cars with black and orange streamers. The chill of the early morning air was nothing compared to the wall of water we would soon be launching in to as we strived to sweep the field with blue ribbons. Someone would be playing our team song on the single front speaker of their 1970’s station wagon loud enough for the entire parking lot to hear. The Eye of the Tiger. Survivor’s finest song. For years that tune started the adrenaline that would carry me toward victory, which manifest as a ribbon in hand at McDonalds on any given Saturday during the summers of my childhood. What I took for granted was the fact that Dave Bickler wasn’t singing about Elvira, the Queen of Darkness, at any point in his illustrious career. Instead, he was singing about ‘our rivals’. I suppose it made a lot more sense for him to be singing in generalities rather than specifically focusing in on a single figurehead of Halloween, but for years and years, I conjured her image while I waited for the gunshot on the blocks. ‘Rising up to the challenge of Elvira’ rather than ‘Rising up to the challenge of our rivals’ shaped my entire perception of sport and competition during the most formative years of my life. I was going to beat that scantily clad mistress of the dark no matter what!
I’m pretty sure that I have some undiagnosed learning disability that allows me to find and replace rational thought with an Elvira narrative. I think it lives in the same part of my brain that can’t spell, or formulate sentences into grammatically correct arrangements. I am an enemy to those who are sticklers for proper grammar. They think I’m ignorant, and aloof to the strict written rules of the English language. And in todays world, where 93% of communication happens through fingers on a device, coming across as an educated scientist is a real struggle when you read over your/you’re typo’s a few times before hitting send, only to realize afterward that you racked up a bunch of incoherent sentences to someone you have no relationship with.  ß See that? It’s a sentence ending in a proposition, ENDING IN A PROPOSITION! Ok, It’s a preposition, but I only just realized that after furiously typing the previous sentence.  I can come up with a hypothesis to explain results fresh off the columns, but man, do I find the English language vexing.
In the end, I think I get my point across just fine. I am pretty sure that no one questions what it is that I actually mean. I hope like hell that people can see through the many oops’ of my writings to see my intentions, what motivates me, what I’d give my life for, how deeply I love, how intensely I want to help everyone who has been handed anything but flowers in this world.

I guess I can do all of those things with my heart and still have room to fight Elvira. Write?

Saturday, July 30, 2016

Urban farming as a recovering scientist

We took a trip to the garden center around the corner from our new house and picked out a variety of seeds. I wasn’t entirely sure what we were going to do with them, but there was a garden store, and they had seeds, and the seeds were really cheap and small, and seemingly innocent. The girls wanted pumpkins and watermelons, while I opted for the much more sophisticated beef steak tomatoes. I bought those tiny little seeds half-heartedly, with the idea that we could learn about the germination process, but not much more. There’s no way that this suburban girl could have foreseen the series of events that have since taken place between that moment and me interrupting my home grown vegetable dinner tonight in order to lock up the chickens and ducks for the evening.

I had been at the bench for 15 years, and was accustomed to days that didn’t include a lot of sunlight. I had one of the most coveted benches in my graduate lab. It was next to a window that faced a wall. But, you could tell whether it was day or night by the shadows cast from outside facing windows down the hall. In the height of summer, the soft yellow glow of the sun filtered in enough to overcome the single tone fluorescent glare that filled the medical school. And those summer nights? Not so much, unless crunching data with the windows open constitutes a good time in your many books. Being a scientist is time intensive. Being a mom is more so. Being both is fabulous if you don’t need much sleep and have no hobbies at all. Not even a favorite TV show. Not even one you don’t really like.

But then cancer happened, and time went insane. It became a monster. It scared the crap out of me. It threatened to leave me, while carrying everything I loved far away. I tried to fill every second of it to lock it in place. And man did I succeed. I kept time so busy that there wasn’t even a fraction of a second for it to remind me of all the horrible possibilities that it had in store. Science and advocacy by day, advocacy and motherhood by night, science into the wee hours, and a clonapin to keep me from waking up from dead dreams. For months, then years. And then I stopped.

When I left the bench, I walked in to a life that didn’t require my hands on a pipette in a cold room at night. I haven’t even seen a timer in years. I spend my Saturday mornings with my family. I make breakfast for my girls. I go to seed stores and buy random things.

About a week after our germination party, we planted the shoots in dozens of little peat moss square strips and set them up in the big southeast facing bay window that seems to catch sunlight from dawn to dusk. And when they sprouted? We were hooked. All of us. The plants followed the sun like little green worshippers, each leaf  trying to reach above and beyond the others toward those rays of light. It was life like we’d never seen it before. My girls monitored the rapid growth of their favorite plants for months as we waited for the farmers almanacs much anticipated last day for frost.

We planted each little experiment into the freshly tilled earth on Mothers day and went to sleep hoping that we’d wake to upright plants thriving in the back yard garden. The next morning, we moved our sore bodies to the window to sneak a peek, and sure enough, there they were, bending with the gentle breeze as they reached for the sun.

The only thing missing was fresh manure, so Ted and I went to the seed store and bought 4 ten day old chicks. We went back a few weeks later and bought 2 baby ducks. And then we built a huge coup under the deck. And started looking at baby goats all as we harvested the world’s best tomatoes that were pulled from plants growing next to Charly and Maddy’s pumpkins.

My babies nurtured every plant, they looked into the flowers to see for themselves how pollination works. They pulled carrots and beets with anticipation and examined the shapes and sizes of each with a mixture of accomplishment and wonder. They plucked snap peas in the morning for their snacks, and cut broccoli in the afternoon for their dinner. They placed their harvests in a fuzzy pink bunny basket, and walked the garden like pro’s, picking only what was ripe, and only what we needed for that day.

All of life’s lessons unfolded for my babies in that garden. The cycle of life, the importance of death, responsibility, nourishment, sharing, hard work, diligence, patience, opportunism, accomplishment, and how to clean dirty little finger nails were readily available for the picking in my back yard.

I went to the seed store because I wasn’t on a timer. I go back all the time because I’m letting life unfold instead of forcing myself into every second of it.  My girls are learning how to cook and bake with food they made from a packet instead of a package. I love it all, the lessons, the very green life, the memories and especially the zucchini bread. Life has never tasted so sweet. Next up? A hydroponics system in the basement for the long winter months. If you need me, I’ll be surfing amazon looking for grow lights.

Friday, June 17, 2016

Even the stairwells are haunted in Cancerville


There’s a suite of offices at Dana-Farber that has a couple of admins, some filing cabinets and a coffee maker. I walk briskly past it every Friday on my way from one meeting to another as though I am trying to discretely run from a ghost. Once upon a time, that was a clinical floor, and I was a patient getting blood work in the post-diagnosis haze of Cancerville. Now I find myself trying hard not to see the color of the walls the way my mind recalls them from my days in the chair. I’m in that place that lies between patient/advocate/scientist. You know, where you are grooming over patient data in a Johnny waiting for a scan, and then looking at a genomic analysis after you get your results?

Over the past 6 years, I’ve been imaged on every machine in the Partners system, some multiple times. After each scan, I find a new place to sit and wait in mortal fear of what will be delivered on the other end of my cricket ring tone. As a result, I’ve infected every inch of that massive complex with my very rational fears.  

But that’s just me, and I can handle myself.

What I truly struggle with are the ever-present faces of my friends who I saw in earnest for the last time in that cafeteria, or in that waiting room, or in radiology, or on a bed in Brigham’s. In only one instance did I know for sure that I was walking away from a friend forever. I ducked into a stairwell and wept silently. My tears were met with the most heart wrenching sound that haunts me to this day. It could only have come from a person at the instant they found out that their loved one died. We can’t make that sound, it has to be ripped from us.


So if you see me walking down the hall a little fast, or eating my lunch facing the wall, or reluctant to stand on one particular side walk, it’s ok, really. In the words of Bobby D. ‘It’s life and life only’

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.