There was a time about a year and a half ago when Jessica and I would semi-regularly listen to this particular “This American Life” and cry, together. Just picture us, sitting next to each other on the couch, slightly under the influence, sobbing our eyes out. Act One is all you need; it’s so beautiful and great. This, however, is the opposite of that:
Archive for February, 2010
The Q&A with the reporter from those melanoma trials articles is heartbreaking.
Q: So much time is wasted. People die. Every day. -lah9999, Michigan
A: Indeed. One of the more heartbreaking moments in my talks with the patients on the trial was when I asked one, a relatively young, unmarried man, what he had been doing before he was diagnosed with melanoma. ‘Nothing,’’ he said. ‘For the better part of about 10 years I did close to nothing. I just always felt I had so much time, decades and decades and decades when I could just do whatever I wanted to do. You don’t always anticipate everything.’
The trial drug, he was hoping, would give him another chance.
Q: Can someone join now? How does one get in the trial? -phred1
We’re right around the time that I could probably call the scariest period in my life – when Clark was first diagnosed, two years ago.
February 28 was the day a doctor set a box of tissues in front of him and told him he had four-to-fourteen months to live. Aftewards, we sat in his mother’s living room, debating whether or not to cancel the show. At this point, we had no idea what we were in for. We hadn’t talked to any doctors about treatment or surgery. All we knew was that some guy had told him he was going to die within the next year or so. And he played the show anyway. My mom came down, and I kept breaking down at the bar at the Cat, and we put on a face for at least half of our friends and pretended like nothing was wrong. But the fact that he played that show that day is all you need to know about him to know how amazing he was.
NYT’s doing a week-long series this week called “Target Cancer” wherein they focus on a doctor running a clinical trial for melanoma patients. Yesterday’s installment was wonderful. It reads like a mystery from the doctor’s perspective. Today’s piece hits really close to home.
Dr. Flaherty made the tumors disappear with his approach. They profile an extremely sick patient who begs to get on Dr. Flaherty’s trial, which is in Philadelphia.
“The trial in Bethesda, run by the National Cancer Institute, involved coaxing immune cells to grow in a test tube in a procedure that worked for only a small fraction of patients, Dr. Flaherty knew.” Clark was on that same trial at NCI.
And this, “No one knows just what causes the single change in a single gene in a single cell that fuels a malignant melanoma.”
And this, “The tumors on his legs that had constantly oozed blood dried up and then disappeared. Yet every day, he ran his fingers over the spots where they used to be, checking, checking, checking. ‘I don’t think I’ll ever believe,’ he said, ‘that it’s not coming back.’”
“He had never seen a melanoma patient who had been that sick improve that much. He was not sure he had ever seen a melanoma patient that sick who improved at all.”
He was in the hospital recovering from the surgery on his belly, and I was at work, and we were chatting online. I found this today during one of my “where was I one year ago?” moments. Even though looking at things like this make me so sad, doing it reminds me of how strong I am.
Clark: babies, did they say the next treatment is rough? like IL-2?
me: the one they want to do to you?
me: i don’t think anything compares to IL2.
but i think it is semi rough. i think it’s less puking, pooping, ill feeling and more weak, tired. however, IL2 has a 5% success rate, the other treatment, a 75.
so i think that makes a difference too. i was reading testimonies of people who have been cured by the treatment, this was a few months ago, and the one guy wrote that absolutely nothing compares to IL2.
Clark: i can;t stop crying
its hard to read the computer
i’m so happy
me: yes baby
we are going to do it baby
me: i’m so happy too
i know we are
Clark: we got it
me: you are amazing, and we are amazing
it’s been hard but you never gave up
Clark: all because of you
me: i love you clark
Clark: i love you reba
Cella: “These are tears of joy and pain.”
You guys, I’m real excited about this Editors show on Sunday. I was talking about them with Lauren last night, and couldn’t figure out if the music is actually good or if I’m so blinded by my undying love for Tom Smith that it skews my ability to think critically.
With the opening notes of this cover of the Talking Heads’ “Road to Nowhere,” I get tears in my eyes (thank you, Instaboner!). And then there are photos like this one (obvs we are looking at the third one from the left here):
I was at an Editors show the night I first drunk-dialed Clark (which led to a week-long lapse in communication). And I took Clark to an Editors show a few months into our relationship, which was kind of hard for him because I was swooning over this dreamy English frontman and paying zero attention to him. But he was a total trooper about it! And now, Tom Smith, we meet again. I know it’s ridiculous, but there are lyrics like, “In the end, all you can hope for / Is the love you’ve felt to equal the pain you’ve gone through,” and “You burn like a bouncing cigarette,” that I have somehow convinced myself are the epitome of poetic. Because they are coming out of that mouth up there.
JUST LOOK AT HIM:
“Jailor’s Daughter” is one of my favorite songs that Clark wrote. There’s so much beauty in these lines: “Lately I am reaching for what I thought was not worth keeping” and “This day comes around, it reminds me of what I forgot about.”
Today’s Modern Love references the story: “One story is that back in the third century, a saint named Valentine, who faced execution for officiating illegal marriages, fell in love with his jailer’s daughter. Somehow he wrote and delivered a card to her that he signed, ‘From your Valentine.’ Then he was killed.”
Then editor Daniel Jones answers the question, “What is love?”
“If I were Spock from “Star Trek,” I would explain that human love is a combination of three emotions or impulses: desire, vulnerability and bravery. Desire makes one feel vulnerable, which then requires one to be brave.
Since I’m not Spock, I will tell a story.
Say you decide to adopt a baby girl in China. You receive her photo, put it on your refrigerator and gaze at it as the months pass, until finally you’re halfway around the world, holding her in your arms, tears of joy streaming down your face.
But later in your hotel room, after undressing her, you discover worrisome physical signs, in particular a scar on her spine. You call the doctor, then head to the hospital for examinations and CT scans, where you are told the following: she suffered botched spinal surgery that caused nerve damage. Soon she will lose all bladder and bowel control. Oh, and she will be paralyzed for life. We’re so sorry.
But the adoption agency offers you a choice: keep this damaged baby, or trade her in for a healthier one.
You don’t even know about the trials yet to come, about the alarming diagnoses she’ll receive back home, the terrifying seizures you’ll witness. Nor do you know about the happy ending that is years off, when she comes through it all and is perfectly fine. You have to decide now. This is your test. What do you do?
If you’re Elizabeth Fitzsimons, who told this story here one Mother’s Day, you say: “We don’t want another baby. We want our baby, the one sleeping right over there. She’s our daughter.”
That’s love. Anyone can have it. All it requires is a little bravery. Or a lot.”
Hey, you can have this amazing boyfriend who is going to love the shit out of you, and the relationship will force you to know and own the definition of unconditional love, but he’s going to be taken away from you in less than two years. Leading up to that, you’re going to have to do a number of things, like change his diaper, physically force poop out of his butt, help him walk, bathe him, and make sure he gets his painkillers on time.
Not taking the “out” Clark offered me when he was first diagnosed is the best decision I’ve ever made.
I think Jens Lekman – Pocketful of Money is one of the best songs ever. I’ve just returned to it, and I think I’ve listened to it at least 15 times today. I love when this happens.
From April 1, 2009, two and a half months before he died:
I am concerned about the amount of time there is until the treatment. I feel that three weeks is enough time for me to develop other problems that would keep me from the treatment.
Since the operation, I feel that the melanoma has increased its activity. Before, I just had to deal with some lymphedema issues, but now I feel that the melanoma has certainly spread to all parts of my groin and thigh on my left leg, sometimes prohibiting me from walking at all.
How do you feel about my concerns? Is there anything that can be done to push up the treatment? I’m concerned that the amount of time until the treatment is enough for me to develop complications that would delay or prohibit me from having the treatment altogether. Your thoughts?
Thank you so much, Doctor. I can’t begin to thank you enough for all you’ve done.
My sister told me the other day that I need to stop putting so much pressure on myself. My mother told me that I used to run around like a chicken with my head cut off all the time, and now that I don’t have anything to run around for, I’m losing my shit.
And then there’s this article from the New Yorker, “Finding a better way to grieve.”
“… new research suggests that grief and mourning don’t follow a checklist; they’re complicated and untidy processes, less like a progression of stages and more like an ongoing process—sometimes one that never fully ends.”
“Levels of stress hormones like cortisol increase. Sleep patterns are disrupted. The immune system is weakened. Mourners may experience loss of appetite, palpitations, even hallucinations. They sometimes imagine that the deceased has appeared to them, in the form of a bird, say, or a cat. It is not unusual for a mourner to talk out loud—to cry out—to a lost one, in an elevator, or while walking the dog.”
“When you lose someone you were close to, you have to reassess your picture of the world and your place in it. The more your identity was wrapped up with the deceased, the more difficult the loss. If you are close to your father but have only a glancing relationship with your mother, your mother’s death may not be terribly disruptive; by the same token, a fraught relationship can lead to an acute grief reaction.”
Untidy, yes. That word sums it up.