Raising kids in a world of cancer

I always answer my cell phone when I don't recognize the number. Sorry mom, I know you've heard my voicemail a time or two. But nine times out of ten, if I don't recognize the number, there's someone on the other end of the line who is in desperate need of help. They typically need two things, help getting in to see a sarcoma specialist and help understanding what this disease is. I have ducked out of weddings, thrown experiments in the biohazard box, and excused myself from dinner countless times in order to answer an unidentified number. What I never stopped to consider was the effect that all this talking would have on my kids.

My nine year old daughter brought it home for me last year though. We were driving on the highway when my phone rang. I drive a 2007 minivan with almost 200k Massachusetts miles on it. In other words, it makes more noise than Fenway when Jeter was at bat. Needless to say, I needed to roll up the windows, turn down the music and focus keenly on the voice that was stuttering through their tears on the other end. My words were sobering and often morbid. Her brother was in a very advanced stage of the disease and she needed help overcoming the guilt associated with being a helpless caregiver. She needed reassurance that there was nothing she could do at that point. She needed to know that reaching out for help made her an outstanding sister, regardless of what was so clearly out of her control.

Charly heard things like, "Are his bleeding ulcers exposed?", and "I'm so very sorry, but I've never known anyone who lived beyond this point" and "Yes, I also have this same disease, but there's no evidence of it...right now" and "I'm so very sorry, I wish there was something, anything I could do to help."

I put the phone down after twenty minutes or so, wiped the tears from my eyes and turned the radio back on. Charly said to me, "Mom, I wish your phone never rang". I was instantly overcome by guilt like never before. In the split second between her lamenting and my apology, all of the calls came flooding back. How many did she hear? What have I said in front of her? How irresponsible am I to have my child hear the details of how cruel this disease is? She hears that it's the same disease that I have? That I could die too???? I was about to pull over and award myself the mother of the year trophy when she interrupted my apology with, "No mom, I'm not upset. it's just that if your phone didn't ring so much, it would mean that less people were sick".

Confessions from a fledgling patient scientist

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

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

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

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

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

Long term grief..in it's happiest form

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

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

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

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

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

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

Think bigger while staying true to our cause

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

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

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

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

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

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

Find the areas in research where everyone wins if we come together and fund cross-indication large-scale endeavors. Recent technological breakthroughs and success in cross indication trials have underscored the fact that there is a new paradigm in the world of cancer research. The walls are coming down, and in their place will be remnants of borders left on path slides. We will be defined by the genetic mutations in our tumors, and the biomarkers that indicate whether we are likely to respond to targeted therapies and immunotherapies.

But, we will need quite a bit of translational research that no one will fund but ourselves. Want strength in numbers? Fund genomics and biomarker initiatives that span ALL sarcoma sub-types, or better yet, all rare cancer subtypes. Have foundations that are focusing on individual grants to this effect chip in for institute wide studies. There’s power in numbers here, not only statistical, but financial. We will all win if a bunch of us put small grants together for the same research study. And we can do this while maintaining our autonomy. If we as a group fund a 25k angiosarcoma genomics study at MDA, we will get a few tumors sequenced, we may find out what genetic drivers are part of the incredibly complex puzzle that drives our disease. However, if we as a group put that same 25k into a study with 10 other groups, those same few angiosarcoma tumors could still get sequenced along side tumors from other subtypes. Trends could pop out that would never be found without the statistics that larger-scale studies afford. Better papers will get published, more researchers will take notice, oncologists might find more avenues that are druggable. And the best part is, so many more people will benefit.

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

Moving, literally, past the diagnosis

We bought our house in Oxford, Massachusetts in 2005. I was pregnant with Charly, and getting ready to qualify for my PhD candidacy. Aside from typing my proposal on a computer stacked on top of unpacked boxes while sitting on a folding chair, life was perfect. As were the many memories that unfolded over the subsequent five years that we lived there unfettered by catastrophe.

Charly came into the world, and then Maddy. They took their first steps in that house. They learned to sing, to dance, to read and to love all under those fresh green shingles. So it was no surprise that when we told Charly we are considering a move, she fell apart. As did Ted, a little, on the inside where no one could really see. I on the other hand couldn’t be more excited to move as far away from that house as possible.

One of the unexpected fallouts from my cancer diagnosis has been the overbearing shadow of despair that lingers at the end of every memory. My girls play room is where I needed to live while in treatment…I couldn’t walk up and down the stairs easily. So it’s not just a room with lego’s scattered all over the floor next to toys that they used to play with. That’s the room where Maddy first saw a drain coming out of my surgical site. Every time I walk past that room, I see the loss of innocence as I am brought back with warp speed to the moment where I had to describe why I needed a mastectomy to my 2 year old.

When I’m alone in my room upstairs, it’s as though time never moved beyond those first couple of days when I was filled with such mortal fear that I couldn’t get out of bed. I would hear my family playing and laughing downstairs, muffled, as though they were in a completely different and inaccessible dimension. I hardly ever lay in bed now, I never linger. I sleep there and then I get up as fast as possible so that I don’t have to relive those moments, which will always be front and center. Time has never erased, healed or even veiled those raw moments. Rather, it has tainted all of the beauty that has unfolded there with the overarching broken record feeling of despair.

In almost every aspect of my life, I have moved past the diagnosis and am better off for it. I can control my fear. I can move this collective fight forward with every single person I talk to. My babies understand the need to help, everyone, all the time and with no expectations in return (best thing ever by the way).  Despite the significant challenges that cancer poses to couples, my husband of 13 years is still my best friend. But I can’t smile from my heart in that house.

Last night, we sat as a family looking at houses on-line. After Charly realized that she would still be close enough to visit her friends, she was ok. After she saw what might be her own room in every house that we clicked through, she was ecstatic! I can’t express how happy I am to start over..again.. Here’s hoping for many weekend mornings of sleeping in!

Urban Cancer Dictionary

If you’ve been diagnosed with cancer, seemingly innocuous words or phrases take on a completely different meaning. In my world, words like remarkable, and radical are terrifying! Here’s my top five list of words that might make a cancer patient shout out for joy or quiver in fear:

Unremarkable: This is the second most coveted word. If it’s typed in our scan reports, we celebrate, we call our family, our friends to tell them just how fantastic it feels to be unremarkable. Nothing remarkable means no tumors, NONE. It usually precedes the most coveted three letters of anyone with cancer, N. E. D. (No Evidence of Disease)

Suspicious: Dreaded like none other. Instant thoughts? The cancer is back, the cancer has grown, they’re not quite sure, so I could be doomed, or it could be scar tissue, I’ll need more scans, different scans, maybe a biopsy….

Radical: Until I had a radical mastectomy, this was always a positive word. Living on the edge in life? You’re radical! No longer the case after “breast malignancy”, now radical resounds as an aggressive way of removing a breast.

Bruise: A memory from some rough housing? Not any more! With an angiosarcoma diagnosis, any small bruise can signal a recurrence. Every single time I look in a mirror, I see a dreaded bruise, and without fail, I assume that it’s cancers flag planting itself in all it’s purple glory.

Take a deep breath and hold it: Anyone who has had a CT scan has had a lovely computer simulated voice utter this phrase. It’s the very last action we take before we are bombarded with the ionizing radiation that will reveal the extent to which we are remarkable…or unremarkable. It represents the crescendo of scanxiety. Holding your breath while your life literally hangs in the balance? Agonizing

Progress, legitimate progress

My how things have changed with respect to cancer research over the past 5 years. Cancer immunotherpaies are working. THEY ARE WORKING!  Sorry to yell, but when you are on a makeshift life raft and you see an aircraft carrier in the distance, it's a motivator to row a little faster. THE PROMISE OF GENOMICS IS BEING REALIZED. Again, pardon the enthusiasm, but we have been waiting for some real promise on this horizon for some time now, and it's happening. We have DNA in all of our cells (except red blood cells). Sometimes the DNA gets damaged, that damage can lead to cells that don't know how to die, or want to grow too fast, and in most cases, both. That's cancer in it's most minuscule nutshell right there. If we can understand fully what the underlying genetic causes of these behaviors are, we can try and target the proteins that are responsible. We've known this for a long time, and have a number of "targeted therapies" (or drugs that are designed to specifically target the problem proteins as opposed to chemotherapy, which just goes after all fast dividing cells, regardless of if they are cancer or hair follicle cells..), but for the vast majority of cancers, these targeted therapies don't lead to long-term remissions. There are a number of reasons for this. Cancers literally evolve. One mutation in DNA might lead to problems in a cells ability to correctly make more DNA. So the new cells that are "born" have even more DNA mutations. As soon as the safeguards that are built in place to faithfully copy each letter of our DNA are mutated enough, then it's a race to see which tumor cell can outgrow the rest.
Technology has reached a point where we can ask questions like, "what drives my cancer, why did I develop resistance to a targeted therapy, what combination of drugs might work best for me". And when I say it in the first person, I mean it...from the patient, for the patient. And this brings me to my favorite point with respect to progress in cancer research. THE PATIENT IS BEING LISTEN TO. I'm not even going to apologize for that one. It's the most amazing thing, and it's catching like wild fire..doctors and scientists want our opinions, they want our insights, they want to learn from us. We are moving into an era where medicine will be one giant group effort, clinicians, scientists and patients will all move this forward together. Such a stark difference from the day I was diagnosed, and so quickly. I have so much hope right now, hope that we are going to see even more significant breakthrough's in our lifetimes as long as we continue to come together.

How to build a slingshot

Being diagnosed with a rare cancer sucks the air right out of your lungs. But when you're a biomedical scientist, it sucks the oxygen right off your hemoglobin.

Here are a handful of reality checks that occurred to me very early on. Beyond the horror of getting dealt the cancer card in general, there is another layer of despair to work through. There is no funding for this disease. There will never be funding for this disease. No one in their right mind would even attempt to write a grant for angiosarcoma. There is no way to fight this goliath, there is no hope.

But man was I wrong. I was thinking like a scientist, and not like a patient. A patient finds hope in any situation and will charge ahead full steam until there is a defined path. I am reminded every single day that we, the patients, are a force to be reckoned with. 

Biggest lesson of all so far? How to build the slingshot. It starts with becoming organized. Because angiosarcoma is so incredibly rare, there are very few resources available to us, so we rely almost exclusively on each other through an online support group. We leverage each other's skill sets to secure support, knowledge and resources.  In our facebook  group, we have artists, musicians, pilots, engineers, nurses, scientists, medical doctors, stay at home moms, teachers, philanthropists, and scrap bookers to name a few. And we ALL throw our talents in the ring. We all get it, we all know what's at stake. 

So after four years of this n = (statistically insignificant) experiment that we found ourselves the subject of, what's come out of it? For starters, a family that offers support at every stage, from diagnosis to grief management. But beyond that, we have raised hundreds of thousands of dollars, often in the most unexpected ways for research. My favorite is a white water rafting fund raiser in Coloma California (Raft4life.com). After the bonding and the fun on the river, we put that money directly into labs that have the ability and resources to conduct top notch research squarely focused on angiosarcoma. 

When Lauren Ryan started our community, she never worried about the numbers, or the lack of resources. She never saw this as hopeless. She just forged ahead and picked us all up along the way.  Next week I get to deliver a 25k grant in Lauren's name to a very promising researcher who is committed to thwarting this disease. And in the weeks thereafter, our group will be delivering at least two more grants to other researchers who are focusing specifically on angiosarcoma. Not in my wildest dreams, nor and in the depths of my greatest despair, could I have imagined this as a possibility. But than again, there were a lot of things I couldn't imagine without the help of my angiosarcoma family.