Biotech 4 lunch

Life is really good right now. My only complaint is that I'm experiencing BBN (Basic Blog Neglect), which I believe stems from the fact that I am so busy living life that I haven't carved out much time to reflect upon it. The past few months have been wonderful. With a clean bill of health, happy kids, and a wonderful husband, I thought I had it all..until I began to have lunch with the Biotech 4 lunch crew.

I used to eat a salad at my desk as a grad student. Now I eat pistachio nuts and vegetables out of bags as I get my daily education from my new lunch mates. I come home with stories worth telling someone, anyone almost daily. I have to wait until the kids are asleep before I can mention them to Ted. Sometimes I have my camera on and pointed in his face to catch the anticipated look of confused bewilderment that ensues after telling him the things I've learned. Best Pictures ever by the way. In fact, I told members of my family some of these stories at thanksgiving, and like I did with Ted, I captured that moment of WTF manifest. I'm thinking of making a collage.

I wish that everyone could come and find space at our table and enjoy the random and ridiculous stories that are shared. Some topics that have been particularly noteworthy are fruit fly, duck and human "mating" rituals, mold beasts, my lack of knowledge about all things religious, and the inconceivable disliking of the Beatles.

The last thing I could have imagined when I started my new postdoc was that my education would be so far reaching, but everyday I am reminded of just how much there is still to learn.

Maddy and the Milestone

Last week my baby turned 5 years old. What a gift it was for me to watch her pass through what I thought would be an unattainable milestone. She turned 5 as though it was any other day, only with a dragon cake and more MORE MMMMMOOORREEE unicorns. She turned 5 while being totally lost in the moment. The silliness that she expressed before she could use words came bellowing out in streams of 5 year old laughter. She is so good at being alive, I learn how to be a child all over again every time I look into those blue eyes. What a gift it is to be part of her.

Rebecca Robinson

Rebecca was one of the first women I met who had the same diagnosis as me. I told her husband the other day that when I went in for my first infusion, the chemo nurse calmed my nerves by telling me about another woman who had just received the same regiment and went off the next day to sheer sheep at Old Sturbridge Village. Being part of such an exclusive group of people in the era of social networking, I knew immediately that she was talking about Rebecca. The mental image of her at work out in the sun totally unaffected by what was dripping into my veins gave me a tremendous amount of relief, probably the first respite since my diagnosis.
I feel extremely fortunate to have had her friendship over the past few years. Regardless of the heartbreak of knowing she's gone from this world, I'll keep those first images of her with her beautiful long red hair and her gentle spirit at the forefront of my memories.

Brooke Ramsdell

Your last words to me were that you loved me. Mine to you are the same, I love you Brooke.

From Bedside to Bench

Two years ago, I was recovering from my second surgery while trying to find space in my brain to host my new identity..cancer victim. I never went through the "why me" phase of acceptance, I just decided to move forward and make the most of whatever time I was alloted. I've talked often about the progress that we've made as a group with Angiosarcoma Awareness, I can't help but feel extremely lucky for being able to play a role, however small, in the lives of others going through this catastrophic event. Two years ago, I became empowered in a way that would never have been revealed to me without the diagnosis of angiosarcoma. I'm about to begin a new phase of my life, I'm going to the bench to conduct cancer research. Wish me luck!

Happy *insert blank here* Day

I think my kids are the best, we cart them all over the place in order to accommodate our theory of doing stuff = fun, and they keep the whining to a minimum. This weekend, we went in one direction to play in the Berkshires and than in the opposite direction to fulfill Ted's year long dream of seeing Plymouth Plantation for father's day. The kids laughed, smiled, neighed (Maddy is a unicorn of course), cuddled, and sang. Oh the singing. At one point, we were out on the dock enjoying 75 degrees of lake side warmth watching the girls catch fish with nets while they sang oh what a beautiful morning. It was a hollywood fake family moment that was really unfolding before us. Ted and I looked at each other confused and happy..but really with a "how did we do this" expression that we often pass to each other when our kids show us what it's like to be truly happy. They could never have guessed it, but their joy at being alive was the most priceless fathers day gift ever. I don't think it hurts that they are the cutest humans to have ever lived..I'm not biased either, just ask Ted.

7 years of Charly Painter

When Charly was 2 weeks old, I held her over my shoulder after nursing her to sleep. As we rocked together I burned us into that moment. The feel of her soft downy hair under my palms as I stroked her hair, the milky baby smell that newborns possess, the feel of her little head nuzzling in my neck, the sound of her heart beat, the rhythm we were in, the exact lighting in the room, the direction the chair was facing, the colors of the clothes hanging from the newly placed hooks on the wall, the details, every single one of them that could be collected in the flash of a second..all burned so deeply into that moment, that I never left. We talk about it often, usually when I tell her how big she is and how unbelievable it is to watch someone grow into the world. She's 7 years old today. I am so proud of who she is. She is a happy, talented, beautiful soul who teaches me every day how to keep the magic that adults usually toss out in favor of "reality". What a gift she is, happy birthday beauty!

Oh Worcester, why are you not any other town?

Just got back from a trip to the pacific northwest followed by a quick trip up to Vermont to watch Ted run another marathon. My friend mentioned that it must be tiring and I agreed, especially regarding the stress of sitting on a blanket in a park waiting for Ted to run by. If only he could slow down a little, I wouldn't have to constantly pick up my blankie and move the kids to another play ground. Some people are just self absorbed I guess.
I love Portland, Seattle and Burlington. I want to move to each of those towns simultaneously and sell used books, throw fish and make cheese for a living. Is there a way to combine them? Maybe I can just accept that I live in Worcester and throw books about cheese eating fish at the Mass Pike toll collectors.

Guilt

From the day of my diagnosis, I have been filled with an unshakable sense of guilt. My rational analytical mind can not overcome the overwhelming thought, "it's my fault that my children will suffer". People say that time fades all wounds. They lie. I have the exact same feelings right this moment that I did the day of my diagnosis. The only thing that has changed for me is the frequency and duration of my collapses into the abyss of guilt. I'll be walking down the hall thinking of anything but cancer when out of nowhere I envision my children at my stagnant bedside. What a drag! I almost wish I was scared of this disease. I think fear would be easier to manage than guilt. I would rather cry for myself than for my children. So there it is, after two years, I may go days instead of minutes without the undercurrent of guilt pulling me out of the moment, but it doesn't mean I can breath easier just because I spend less time under water. I just want to get them to a place where they want me but don't need me.

Confessions from a Freshman Chemistry adjunct

I was hired on a Thursday to start teaching the following Monday on a subject I hadn't seen in nearly twenty years. Not only did I not have the book that I was to lecture from, I didn't even know it's title. I searched youtube for "how to teach college chemistry" for some ideas. I asked my PI if he had any random notes or an old syllabus left over from when he taught at MIT. He laughed at me a little..and then probably a lot when he walked out of the lab.
Two nights before I was to greet the class, I received one of my most favorite emails. It was a complete set of lecture notes, quizzes and exams from the professor (who was on sabbatical) that I was replacing. AHA! Start with the atom! Makes sense right?
I had no idea what I was getting into.
At first, I was spending about 4 hours of prep time for every lecture. I would read the sections carefully, then type lengthy notes, then read my notes and make handwritten notes in the margins. I would re-read them before the class and then breath a sigh of relief at the end of each lecture.
As time went on, I was able to spend less time on the prep. My notes deteriorated into bullet points which quickly fell by the wayside. Ultimately, I ended up zeroxing the book and jotting a couple notes in the margins. No one could ever accuse me of throwing material at them that they couldn't find!
Even with my reduced prep time, it was still quite a bit of work, but it was full of rich rewards. In fact, I'm reaping them now as I dole out the grades that the students earned on their final for the second semester. I feel a little like Santa as I hand each one out..only I'm a skinny little beardless girl and the kids worked extremely hard for these presents!
I'm already nostalgic for my days as Professor Painter and I haven't even turned in my key. If I could have multiple careers I would choose this one in a heartbeat. I loved the students, I loved watching them love science. I loved office hours, their minds opened up right in front me. I was hired on a Thursday to start learning the following Monday. I think I learned more than they did.

I see leprechauns

I don't know much about psychology, but I'm pretty sure that I have post traumatic stress syndrome, or maybe contemporary traumatic stress syndrome? I see things. Ted says they're not there. My doctors agree with Ted, and so does the mirror, and the pictures on my cell phone. But when I look directly at my mastectomy scar, I see bruises and discolorations and leprechauns..all of which are hallmarks of an angiosarcoma recurrence. Seems like sneezing is a hallmark of an angiosarcoma recurrence. It's a tough challenge to find a balance between vigilance and full blown pyschotic meltdowns replete with hallucinations. Thank the lords above that I have many MANY reality checks, 99% of which are glances from my children. The last 1% is a conglomeration of what I once thought was important. So be it, I see things..if my scar starts to talk to me...I'll see a different kind of doctor;)

3 days of laziness coming my way!

Writing my thesis while going through chemo?
Getting a puppy after I finished chemo?
Teaching a year of Freshman Chemistry at a local college?
Charity, charity and more begging for money for my charity?

I have no idea what I was thinking when I undertook these endeavors, but right now I am pretty happy that I took the time to do each. I graduated, my puppy is now the best doggy in the world, teaching was a blast, and we've raised over a half a million dollars for angiosarcoma research. Not too shabby. I've been perpetually busy now for about 3 years, but things are starting to wind down now, so much so that I have 3 days, THREE DAYS where I don't have to work at night! This is the longest continuous stretch of not working at night that I've seen in years. I'm so excited thinking of all the bad TV that's coming my way. Suggestions are welcome!

Capitalism

It's never an ideal situation when you're handed the cancer card. I don't think it's tops on anyone's list of "things I'd like to try". Nevertheless, it gets dealt to just about everyone at some point in their life or in the life of someone they love. One of the greatest lessons that I've learned along the way is that you can do something about it. In fact, you can do everything about it. We are in control of our own destiny, and whether we have 5 months, 5 years or 5 decades, we can take action and change the status quo. Never settle in this world folks, do something, push the limits, turn over the rocks and boulders that are in your way. Better yet, learn to climb them so you can use them to gather a better vantage point for all that's left in front of you. I may have a giant question mark hanging over me, held in place by times sickle, but I'm not running away from it. If it's going to be there, I might as well see how I can capitalize on it. Maybe that punctuation mark will be placed after following sentence: When will we all come together to eradicate cancer.....?

For Marie

We met through the whipping post, both eager to find an outlet to express our common hatred for cancer. You've been at the heart of one of my life's great lessons. I don't need to know the sound of your voice, the expressions on your face, the idiosynchracies that define you to others in order to know who you are. We know each other well, we feel each other in this world without the use of any of our senses. When I read of Rachael's passing just now I became steeped in sorrow thinking of all that you've been through and all that you have left to endure. I wish there was a way to ease your pain, I wish the universe were more kind to you. There's only one thing left to say, and only you know what those three words are.

Cycle for Survival

I don't really know where to begin as I sit here reflecting on this years Cycle for Survival. As much as I want to say that it was a transformative experience, I hesitate. One way that I have tried to pay tribute to Jen Linn is by resisting the urge to write empty phrases. But the cliche keeps hammering my brain..transformative experience....I just can't shake it.
There's the monumental sum of money that was raised which will actually transform the seeds of ideas, that are already germinating in the minds of the scientists at Sloan, into tangible results. These results will transform the treatment modalities that determine whether people live, die or struggle somewhere in between.
These transformations are built into the fiber of cycle, they drive us to donate, ride and raise awareness for the need to fund rare cancer research. But when I sit here thinking of the past couple of months and all that led up to the culmination of the events, I am brought to tears by the transformations I saw in the hearts of my friends who had no idea that people loved them so much. They reached out with shaky hands, unsure of how they'd be received and were greeted by such generosity that they no longer felt helpless, or hopeless in their lives.
I watched as people flew in from all over the world to sit on those bikes, I watched as people embraced other survivors for the first time in their lives, I watched as people reached out for and received closure from long open wounds that never healed, I watched as people smoked themselves for the entire 4 hour ride in honor of their loved one. I just can't shake it, our bodies, our minds, our hearts, our lives were transformed.

The little drummer boy

People often use war analogies when describing their experiences with cancer. I've never been to war, but I have CNN. As for whether cancer comes close? We battle, We fight, we win, we loose. We loose body parts, we loose friends, we loose our sanity.
I feel like my role in this war is more akin to the little drummer boy than any warrior that might have a real weapon. I walk through tragedies trying to give focus to the battle. I am defenseless, but move forward through the carnage hoping that I will be able to keep my rhythm without falling.
I have CNN, NBC, google news and access to all the worlds information at my disposal every second of every day. I think it's time to bring the cameras a little closer to this war of ours...maybe we'd at least get a better soundtrack than me on a drum.

evolution

Why have we evolved the capacity to feel so deeply the pain of others?

Too many thank you's are a good thing

It's cycle for survival time and I'm heading down to DC today to take part in the event in Bethesda. This year is going to be bittersweet, thinking of all the people we lost in one year alone. Faces that I want to see and voices that I want to hear are alive and well in our collective memories, so walking into the gym, I'm fully expecting to see them there... How can cycle happen without Jen and Alyssa? My entire mental framework for this is wrapped up in still framed images, Jen at the podium expressing her infinite gratitude, Alyssa dancing with zeal in her infamous tiara.
Then there will be the faces of old friends. The memories I have with them extend back to my childhood, long before any of this cancer nonsense. To see them come out in the context of this fight will force my worlds to collide a little. But the universe is big, and there's plenty of space for creative entanglements like these.
I am grateful beyond words to everyone who has participated in our many angiosarcoma teams and for every penny that's been raised. I try to stay on top of things, but if I missed anyone in my many thank you's, I am sorry. Whether you shared 10 or 10000 dollars, every penny is going toward the cure that WILL be found. Every one of you is in the lab, working with those precious samples to try and understand what's causing this disease. You are all supporting the hands of the technicians who are processing the data, in the minds of the researchers who are writing up the manuscripts, on the scripts of the clinicians who will be prescribing new drugs to fight this disease. Many many thanks to all of you who get why we have to do this and who have jumped in with unwavering support.

ahhh, nigh night time

In each 24 hour chunk of time, there are 30 minutes or so that are always the most golden...at night, in bed, snuggling and reading books with my babies. I love every second in each of those minutes. I pull my children so close to me that I can feel every little breath that they take. Yeah, there are words and pictures, but they're really just excuses for me to get my magic from those girls. Have you ever felt the radiating warmth of a child's love? Words become ridiculous when trying to describe it. I think I'll stop this attempt, walk upstairs and kiss their sleeping little heads.

Random tears with random people

I just spent the past week at a scientific conference that was 100% biochemistry 99% of the time. I walked in late to one of the talks and looked for a seat where I could discretely open my Mac and get a little work done while the big people talked about their big initiatives. There happened to be a woman who had her Mac and mind opened to the same ideas, so I grabbed the seat next to her. We whispered hello's and turned back to our respective screens. Between talks, we chatted briefly and it turned out that we had very similar research interests. It took about 6 words for us to both realize that we needed to talk more after the conference. Cancer immunology. Tumor microenvironment. Cytokine signaling. And so we talked research, until we talked cancer. Not the cancer that was on her slides or in my grant, but the cancer that took her loved one and my friends....the cancer that touches every single person on this planet. We came to realize that the great promise that time will erase pain is a lie. The pain never subsides, it just gets packaged differently. There we were, complete strangers in the middle of the mountains with no intention what so ever of being moved in any other way than intellectually, shedding tears together. I'm so very grateful for that meeting. That last 1% let me walk away with a smaller package.

Talking to strangers

I was on the shuttle train last night making my way to the rental car agency when I became profoundly aware of all the isolated worlds packed so closely together. It always makes me laugh..and cry when I look at masses of people and see each person shut off from the rest. It's as though we need a protective winter coat in order to shield us from the chill of other people. It's so unnecessary. We are all (except for people who pretend to have cancer and then steal our money..but I don't consider those people human anyways..)good. We are all interesting. We all crave each other, need each other and want to be heard by each other. If you engage people with nothing but a pure interest in making the most out your time with them, chances are, they'll feel comfortable in a light spring jacket. If you engage them with your full attention, you can suck them right into the moment. Life's too short to live with fear, with hesitation, with insecurities, with anything that anchors us away from each other. Last night on the train, I met a young couple with a brand new baby. They are so proud of their lives and I couldn't be happier that I know that.

people are good

People are good. So glad that I've had such a unique angle to view this through. There are so many of you out there opening your hearts, your brains, your dollars to help us. It's amazing, truly amazing.

Unremarkable me

The best thing anyone has ever said to me is, "Corrie, you are unremarkable". I've been lucky enough to hear this from my oncologist after One PET scan, 2 Sonograms, 9 MRI's, and 11 CT scans. It's been 20 months since I was told how special I was and I can honestly say, I don't miss it at all.
This has been a tough couple of weeks filled with loss, and as happy as I am for my good news, my heart is pulled in a million different directions, none of which are on target for unfettered happiness. I went to visit a friend at Brigham's after my scan. My friend needs people who can walk into her room and say, "This is what's going on and this is how we're going to fix you". What she doesn't need is a gaggle of ego's tripping over their greatness as they walk out of the room. So far, multiple teams seem to think it's ok leaving her with nothing even close to an answer. This shouldn't be folks.
While I was walking off the cancer floor, I heard a woman give rise to the most guttural scream that I have ever heard in my life. That sound could only have been summoned by the instant touch of death in her life. That sound was pain manifest, it was the culmination of how evolution has allowed us to express grief. It was contagious and I instantly started crying for her. I never saw her face, I have no idea who she was, but her raw pain will forever be etched into whatever it is that makes me me.
Seriously people, we humans need to come together and figure this out! Let's stop all the nonsense, get really smart and cure cancer. Who's in?

Peter Pew

When Pete first contacted me, he was looking for some answers, he wanted any clue that would help him find relief from the pain he was in. Even though he was suffering, his heart would always move to a place far from his own problems. "How can this be happening to you, to Lauren, to any one with small children? It's so unfair" he would say. Although he would always contact me for a specific question regarding his own treatments, he would always end it concerned for everyone else, always with a sense of gratitude for all that he had, for all that he was. Pete would talk often about how grateful he was to have grown children, to have been able to spend time with them, real time towards the end. I often told him and his wife that I wish I had a magic wand. I've never wanted one more badly. I would erase the word angiosarcoma from all of our lives and none of us would know each other. I'd look deep in to the eyes of every stranger I met and smile to myself that there'd be no reason for us to be tied with an inexplicably tight bond that had as an anchor the pain and suffering of this disease. I'd hear the name Pete Pew and he'd be just another human being out in California going about his every day life completely oblivious to the cruelty of this monster. I wish I had that magic wand.

Time, what are you?

Time is a precious mysterious thing that we don't understand at all. We like to divide it up into different segments so we can have a calendar and fancy watches that are useful if we want to watch it tick away. We like to freeze it in pictures, imagine what it will bring us, lament what it's taken. We live inside of it's vector and are strapped in, forced to travel only in one direction. Our brains haven't evolved to a point where we can comprehend infinity, it's futile to try. Nor can we imagine what time looks like when it bends around massive objects. We spend our time, as though it's payment for life. But what are we buying? I may not know much, but I try and feel time as it slips by me, through me, over me, within me, without me. We will always be a part of this continuum, stamped forever in each moment. We have a long way to go as humans before we actually know what's going on here, but we might as well make the most of it as we tag along for the ride.

All the hugs

I am so grateful that I was able to hug so many wonderful people yesterday.