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.

Raising the gauntlet

Sometimes the answers to the most challenging problems are right in front of us..and in some cases, inside of us. When trying to string together enough resources to bring down a rare and understudied cancer, like angiosarcoma for example (ehemm), you can gather money, you can galvanize the researchers, you can light a fire under the patients who are desperate for a cure, but in the end, if there's no material to study, there can't be progress.
Fact number 1 in the fight against any monster, you need to be able to see it to win. So what are we supposed to do about the fact that there's too few of us to get the tissue in order to have studies that are meaningful? For the past two years, I have been exploring the idea of opening up a tissue bank for angiosarcoma. But there are many MANY hurdles to overcome before committing to such an important endeavor.

We will get there and this is why.

We are a highly motivated group of people who are already making a huge difference in the world of biomedical research. We have funded research that has led to the publication of three peer reviewed papers focused on angiosarcoma. Unbelievable for such a rare cancer! We know that we need to do this ourselves, and we are willing to pick up the gauntlet despite the physical and emotional toll that cancer takes on us. We are a mission driven family who will go to the ends of the earth for each other.  And guess what, doctors and researchers have noticed. They are paying attention to us, to the fact that we are becoming organized, and that even in this tiniest of populations, there is strength in numbers.

We will get there and this is how.

We happened to get biopsied or resected in all corners of the world. So in Idaho, there's a tumor embedded in paraffin that might hold an important clue that would help us understand how this cancer works. In Northern California, a different tumor in a long forgotten about pathology department might fit a different piece of the puzzle.  Taken together, all of our tumors will reveal the genetic underpinnings of what drives this disease. It will take a little more time to figure out the right path (no pun of course) forward, but we know this must happen. And like we've already done so many times before, we will come together and figure this out as a team. Step number one is figuring out who will participate in a drive to get our tumors organized. Step number two is figuring out where to send them. Step number three is figuring out the easiest way to make this happen so that the burden of doing this is not too much to handle. Step number four is figuring out what we as a community should expect back from this research. Step number 5 is figuring out how we as a community of people fighting for our lives will help each other understand the value of getting our tumors centralized. Bottom line, it's the most significant hurdle we must overcome if we are going to take the next steps toward understanding this beast.

The most powerful weapon we have in our arsenal is our tumors. We can continue to raise money and fund research, but unless we know what questions to ask, we are researching in the dark. Time to turn on the lights and face this cancer with our eyes opened. Time to see exactly what mutations are driving this disease. Time to figure out what chemo's and targeted therapies will work for each one of us. Time for some meaningful change. Time...