Monday, December 15, 2014

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!

Sunday, December 14, 2014

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

Thursday, December 11, 2014

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.

Sunday, December 7, 2014

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.








Sunday, November 30, 2014

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...

Sunday, November 16, 2014

Rare cancer meets social media


“There’s no evidence that chemotherapy will work, so what do you want to do?”. This sentence has been delivered from countless oncologists to just about every member of our angiosarcoma support group, myself included. I had read the literature, and I knew that there were far too few patients to drive the hard data necessary to build a deep understanding of this disease. But, what do I want to do? I want to live!

We all want to live. Universal truth folks.

I walked in the shoes of someone going through the diagnostic process of breast cancer…for about a month…. And as horrible as it was, I was comforted by the countless resources that seemed to be available to me. I had statistics in the tens of thousands, I had community doctors that saw this disease on a daily basis. There was literature and dedicated labs unraveling the genetic underpinnings of this disease. I had pink. Everything was pink, everyone would help me. The NFL had me in mind during breast cancer awareness month, Dick’s sold pink chairs on my behalf. I don’t begrudge anyone with breast cancer, or any cancer for that matter. Nor am I trying to trivialize a disease that is killing women (and men!) at an alarming rate, despite the global effort to thwart it. But when the cancer in my breast turned out to be angiosarcoma, all the “comforts” of a more mainstream diagnosis fell into a black hole that opened up right next to me. I couldn’t even see the rays of light that I knew were trapped by the enormous gravity that was pulling me in.

Primary angiosarcoma of the breast…what do I want to do…..

When faced with mortality, I think the first thing many of us do is try and find someone, ANYONE else who understands what we’re going through. I put feelers out into every corner of the Internet. And I found people! I sent them messages and received nothing in return. Turned out they were gone, all of them, by the time I tried to reach them. So I turned to facebook in a last ditch attempt to find anyone who knew anything about this disease. And I found her. The one and only Lauren Ryan, along side eight other members of an angiosarcoma facebook group that Lauren started in 2010. Every single one of them was alive. They were ALIVE. I instantly connected with each of them. Josephine was 3 years out from my same diagnosis and was ALIVE. Lauren was a year and a half out and had no evidence of disease. They took me under their wing and provided me with hope in spades. I clung to every word they wrote. It was they same story eight times over. Lauren and I partnered up on many fronts and decided to blow this disease out of the water..but that’s a story for another time.

Eight angiosarcoma survivors slowly turned into ten, then twenty. Each time a person found us, we knew they would feel that same profound sense of relief. When we would connect with each other, we knew it wouldn’t save our lives, but it went far in saving our sanity. But we continued to grow, and with that growth came a wealth of knowledge. There are now over 1,800 members in our support group and collectively, we house the world’s knowledge on this disease. Want to know which doctors know the most about angiosarcoma? Ask our group. Want to get an appointment expedited to see them? We can do that. Want to get anecdotal evidence for a particular drug? I can almost guarantee that you’ll get a handful of people who have been on it..no matter how obscure the regiment. Want hope? We have long-term survivors who will go to the ends of the earth to comfort you. Need to vent? We get it. All of us.  When people find us now, it actually might change the course of their disease. We have sent so many people to the same doctors that they have become clinical experts. These doctors now understand nuances of this disease that wasn’t  possible when only a handful of angiosarcoma patients would come through their clinics each year. Patients who get treated at these large volume centers bring the knowledge from these clinician experts to their local doctors. As a result, the patients are driving expertise in this rarest of rare orphan cancers, and that expertise is filtering out into local clinics. All because of Lauren, and our collective need to connect with others diagnosed with angiosarcoma.

“What do you want to do? We now have evidence that this regiment might extend your life” is a sentence that many people diagnosed today are hearing. It’s not the cure that we are diligently working toward, but it’s a giant leap toward better therapies for those of us fighting on the fringes of cancer.

Friday, November 14, 2014

Teach your doctors well


Being involved with a no frills all volunteer organization has enabled me to see first hand the power of the patient. I have relied on the savvy patients in our support group for insight and direction across the board and they have come through in unimaginable ways. I’d like to highlight one example of what can happen when patients are put at the forefront of the fight against cancer.
Ryan Humphrey, survivor-fighter extraordinaire of metastatic angiosarcoma became involved with our support group a few years ago. Ryan is incredibly smart and motivated to make a difference, and he has…and he is. Trained as a pilot, but grounded by this disease, Ryan has turned his focus on everything from fundraising, to patient advocacy to outreach. He has excelled in every one of these endeavors. On the fundraising front, he has brought in tens of thousands of dollars that has gone directly into angiosarcoma research. On the patient advocacy front, he has inspired patients with his own fight and provided them with detailed information to assistant them at every stage of this “process”. On the outreach front, he conceived of and executed an initiative to explore the interest of angiosarcoma research within the sarcoma community. As a result of this outreach, we funded a research project at Moffitt squarely focused on angiosarcoma. I would have never known that this group had the resources and drive to conduct a top-notch project without Ryan’s involvement. I now get updates from other patients that are treated at Moffitt as to how the project is unfolding. The doctors get a thrill when patients ask them about the research, the patients are empowered with knowledge..it’s a win win across the board.
In the upcoming weeks, I will gather information from the scientists and oncologists that we are funding as a patient driven organization and will distribute this to the patients who inspired and funded the research. My hope is that the patients will print out the material and bring it to their doctors, surgeons, nurses, Pas and anyone else involved in their care so that we can continue to bridge the gulf between patients, doctors and scientists. Let’s get it done!!