Friday, December 30, 2011
Linda Pascaris
I sit in disbelief Linda that I am not writing this to you. I am physically numb and can feel very little beyond the tears that are rolling down my face. You were my confidant in all of this. Every time I would get the hint of good news, or a new lead, you were the first person I talked to. We shared the same anxiety driven anticipation for "what's next" and "how can we make it happen faster". You turned to me for hope and in turn I worked that much harder to try and provide you with some..if even just a little. You turned to me because in this tiny little world, it was hard to turn at all, and I just happened to be right next to you. If I can be grateful for anything, it's that I know exactly what you want from me. I know without a shadow of a doubt how you'd want me to carry on. I have you deep within my heart and will carry our dream together with every beat.
Tuesday, December 27, 2011
Back to the drawing board
Life has a funny way of giving you what you need, regardless of what you want. Once upon time, I had a plan. I wanted to move from basic research into something with a little more clinical relevance. While I was finishing up my graduate work, I wrote a grant to study ALS (Lou Gehrig's disease), my friend Brad was dying from it and the thought of having something so catastrophic happen while I sat idly by was not an option. It was during the last few weeks of editing that grant that I found my own fancy catastrophe lurking in my breast. Had I known that I was going to get SO MUCH first hand clinical experience, I might have decided to stick with my little teeny tiny atomic structures in the first place.
When I was first diagnosed, the last thought in my head was to get involved with cancer research. It was too close, too emotionally charged. Structural biology was nice and safe, there was plenty of distance between individual atoms and tumors. So much space in fact, that I could I would often forget that the electron clouds I would look at everyday had any bearing on anything even slightly related to life. But time has drawn me in and I can’t imagine sitting idly by while this catastrophe plays itself out in one more person with cancer.
I’m getting ready to write some grants. It's not enough to administer other peoples research, I need to develop my own project. I’m keenly interested in cancer immunology right now. It’s taken over a century, but there’s finally some definitive progress being made in this field. It’s just a matter of time, money, luck, and the right reviewers!
When I was first diagnosed, the last thought in my head was to get involved with cancer research. It was too close, too emotionally charged. Structural biology was nice and safe, there was plenty of distance between individual atoms and tumors. So much space in fact, that I could I would often forget that the electron clouds I would look at everyday had any bearing on anything even slightly related to life. But time has drawn me in and I can’t imagine sitting idly by while this catastrophe plays itself out in one more person with cancer.
I’m getting ready to write some grants. It's not enough to administer other peoples research, I need to develop my own project. I’m keenly interested in cancer immunology right now. It’s taken over a century, but there’s finally some definitive progress being made in this field. It’s just a matter of time, money, luck, and the right reviewers!
Friday, December 23, 2011
My Inferno
I wish that everyone could take a guided tour of cancer and then return to their healthy lives. I guarantee the world would be a different place. Almost every long term cancer survivor savors life. Self pity, pettiness, boredom...they'd likely go away in a world where people were slapped in the face with catastrophic illness only to awaken to their comfortable reliable everyday problems.
In my divine comedy, people would start on the superficial levels, where you have to call your parents and siblings and be responsible for delivering their worst fears with a trembling voice.
Next, you'd hold your children as tightly as you would a buoy in the middle of a hurricane.
As the tour progressed, you'd sit in overcrowded rooms with masked bystanders all waiting for the same toxic cocktails that have been not saving peoples lives for over 50 years.
You'd wait in the white walled rooms for hours as the familiar voice of your oncologist faded into other rooms.
Time would stand still when he finally opened your door. In that frozen moment, you'd analyze every feature of his demeanor, did he make direct eye contact with you? Did he smile and extend his hand? Was he looking at your chart when he walked in, were his hands clasped? Did he bring other doctors with him? Did he say hello? Did he sit down before opening his mouth??? The result of this thorough analysis inevitably gives you a 1.3 second jumpstart on the flood of emotions that ensue when he tells you the good, or the bad news.
You wait.
You cry.
You watch your friends die.
You stand in disbelief that people worry about their makeup.
I wish that people could taste the agony for even one minute…life would never be as sweet.
In my divine comedy, people would start on the superficial levels, where you have to call your parents and siblings and be responsible for delivering their worst fears with a trembling voice.
Next, you'd hold your children as tightly as you would a buoy in the middle of a hurricane.
As the tour progressed, you'd sit in overcrowded rooms with masked bystanders all waiting for the same toxic cocktails that have been not saving peoples lives for over 50 years.
You'd wait in the white walled rooms for hours as the familiar voice of your oncologist faded into other rooms.
Time would stand still when he finally opened your door. In that frozen moment, you'd analyze every feature of his demeanor, did he make direct eye contact with you? Did he smile and extend his hand? Was he looking at your chart when he walked in, were his hands clasped? Did he bring other doctors with him? Did he say hello? Did he sit down before opening his mouth??? The result of this thorough analysis inevitably gives you a 1.3 second jumpstart on the flood of emotions that ensue when he tells you the good, or the bad news.
You wait.
You cry.
You watch your friends die.
You stand in disbelief that people worry about their makeup.
I wish that people could taste the agony for even one minute…life would never be as sweet.
Friday, December 16, 2011
Charly and the ginger bread house
Charly is an artist and possesses a clear vision and direction for her projects long before she picks up the pen, or makes the first cut, or molds the first shape out of an unformed mass of clay. So it came as no surprise to me when she laid out a detailed plan for how this years ginger bread house was going to be made.
In the Painter tradition, we typically start by buying the prefab house that comes with frosting, ginger house parts, and a variety of stale candy neatly wrapped in plastic inside a cardboard box which is decorated with pictures of the most idealistic ginger bread houses that one could imagine. This box usually sits on our counter for a good week or so before we can find a big enough chunk of time to do it right. Charly had ample time to study the elaborate designs that adorn the box in order to develop a mental picture of what our house was going to look like when all was said and done.
Then came Robby..and then...Maddy, with other ideas, fun ideas. I began to worry when Robby came out of the kitchen with frosting dripping down his arms. My concern grew when he started painting the girls faces with said frosting while the ginger bread house started falling into a state of disrepair. I watched Charly watch her vision turn into a dilapidated ginger bread slum and to my great surprise, a smile was on her face the whole time. Even though our house has caved in sides and one giant oozing dollop of frosting on the roof with a couple odd candies arranged with no precision, all three of the kids could not be more satisfied. It warmed me inside and out to see them laughing and bonding while crafting the most unsightly creation this earth has ever seen.
In the Painter tradition, we typically start by buying the prefab house that comes with frosting, ginger house parts, and a variety of stale candy neatly wrapped in plastic inside a cardboard box which is decorated with pictures of the most idealistic ginger bread houses that one could imagine. This box usually sits on our counter for a good week or so before we can find a big enough chunk of time to do it right. Charly had ample time to study the elaborate designs that adorn the box in order to develop a mental picture of what our house was going to look like when all was said and done.
Then came Robby..and then...Maddy, with other ideas, fun ideas. I began to worry when Robby came out of the kitchen with frosting dripping down his arms. My concern grew when he started painting the girls faces with said frosting while the ginger bread house started falling into a state of disrepair. I watched Charly watch her vision turn into a dilapidated ginger bread slum and to my great surprise, a smile was on her face the whole time. Even though our house has caved in sides and one giant oozing dollop of frosting on the roof with a couple odd candies arranged with no precision, all three of the kids could not be more satisfied. It warmed me inside and out to see them laughing and bonding while crafting the most unsightly creation this earth has ever seen.
Monday, December 5, 2011
How does it feel?
I have been receiving amazing feedback from the labs that we are funding, AND from the clinicians we are communicating with on a regular basis. My surgeon at Dana Farber walked in the room the other day to have a look at a suspicious lump (that turned out to be a pec muscle on a skinny body) and before he said hi, he started to excitedly talk about how his patients are all interconnected as a result of Angiosarcoma Awareness. Another clinician at MD Anderson has echoed these sentiments letting me know that all of his "new" patients know all about him as well as other clinician experts in the field as a result of our collective efforts.
The lab that we are funding at Sloan-Kettering is getting ready to publish two papers on angiosarcoma that will reveal another possible target for therapeutic intervention. The lab in Minnesota that we are funding is getting ready to enroll the first doggie patients into a clinical trial that will hopefully cure us and "our best friends".
The Chief of Sarcoma and Melanoma at Sloan-Kettering, Gary Schwartz MD, had this to say when we asked him for his thought's on what we are doing:
"Angiosarcoma Awareness has brought much needed attention to this rare
disease. As a result of this groups efforts, there is now a large scale
scientific endeavor aimed specifically at understanding what drives
angiosarcoma. This is already being translated into new clinical trials for
patients with this disease"
I'd love to reflect on all this wonderful news with a sense of accomplishment and pride, but until I can add the line, "Angiosarcoma used to be a deadly aggressive form of cancer but can now be effectively treated by....", I will only feel driven to move faster.
The lab that we are funding at Sloan-Kettering is getting ready to publish two papers on angiosarcoma that will reveal another possible target for therapeutic intervention. The lab in Minnesota that we are funding is getting ready to enroll the first doggie patients into a clinical trial that will hopefully cure us and "our best friends".
The Chief of Sarcoma and Melanoma at Sloan-Kettering, Gary Schwartz MD, had this to say when we asked him for his thought's on what we are doing:
"Angiosarcoma Awareness has brought much needed attention to this rare
disease. As a result of this groups efforts, there is now a large scale
scientific endeavor aimed specifically at understanding what drives
angiosarcoma. This is already being translated into new clinical trials for
patients with this disease"
I'd love to reflect on all this wonderful news with a sense of accomplishment and pride, but until I can add the line, "Angiosarcoma used to be a deadly aggressive form of cancer but can now be effectively treated by....", I will only feel driven to move faster.
Thursday, December 1, 2011
At home with a sick child is better then it sounds!
My little Charly came home last night in tears because she felt so awful. "Mommy, help me" she sobbed. I held her warm body close to mine and began the instinctive rock that humans set in motion millenia ago. "It's ok, mommy has you" was all I needed to say to calm her down. We're spending the day at home today. Sick = special time with me, Charly and a couple of mermaids on TV:)
Subscribe to:
Posts (Atom)