A week ago a friend of mine, Greg, posted on my Facebook page that he half expected to hear me during an NPR piece lamenting breast cancer awareness month (click here for the link to the story, where you can also hear the piece). And, of course, I've never been the only person who has expressed a distaste for the pink ribbon (although I might be the only person to have a blog decrying them as "fucking" pink ribbons--those missing asterisks don't leave much for the imagination). Karuna Jaggar, executive director of Breast Cancer Action, recently discussed the insidious pink-washing being done every October on the WBUR NPR show, "On the Point."
But I do find it heartening not to be the only one questioning pink ribbon culture. There is Samantha King's work, which I've written about previously (and the film version, I hope, will reach LOTS OF PEOPLE). And there's Gayle Sulik's book, Pink Ribbon Blues, which also questions the dark underbelly of pink ribbon culture. And of course there's Barbara Ehrenreich's essay, "Welcome to Cancerland."
But it also seems like more and more people are really questioning what's going on with breast cancer philanthropy and whether we have "pink fatigue" and the efficacy of breast cancer research--the fact that only 3% of breast cancer funding goes to treating metastatic breast cancer--which is the stage IV kind that kills women--it's the kind emblemized in those stats that tell us that breast cancer is the 2nd leading cause of death for women. Women don't die of stage I, II, or III breast cancer, and usually they don't die due to complications in treatment (although it does occasionally happen). Women (and the few men who are diagnosed) die because their cancer has metastized to other parts of their body (and this blog that I recently discovered chronicles what it's like to live with metastatic cancer, as well as the frustration at the lack of funding for metastatic cancer treatment).
And this should make us ANGRY. And we should turn our anger into ACTIVISM. Because really, the time for awareness is over. We all know about breast cancer. We all know someone who has had breast cancer. And we certainly all know someone who has had SOME type of cancer. So what we need, right now, is action. We need to get mad and we need to do something. Not to just detect it early. Not to just get appropriate treatment. But to try to prevent anyone from ever getting this disease and needing treatment.
Just what type of action to take...I suppose this is part of the problem. I'm thinking on it. And if you have suggestions, please post them. I really do want to be part of the solution--to be an activist not just someone who raises awareness every October. And certainly not by wearing or buying anything associated with a pink ribbon.
Saturday, October 22, 2011
Tuesday, October 18, 2011
One year later -- my personal commemoration
One year ago today, October 18, I underwent a bi-lateral (double) mastectomy surgery as part of my breast cancer treatment. I went to the hospital in the morning with my husband and mother, where the radiology clinic injected my breasts with dye (which really hurt!) to trace the dye to my sentinel lymph nodes (which they removed along with my breasts to ensure that the cancer hadn't migrated to my lymph system). And then I waited for about two hours (maybe it was even three) before being taken into the pre-surgery room. I was hooked up to an i.v. My personal items were put in a bag (including my glasses, which I'm blind without). I hugged my Mom and Matthew good-bye. And then I was wheeled into the surgery, where the last thing I remembered was the anesthesiologist telling me that he would count to three and I should be asleep, and I think I made it to one...
And then there was the very disorienting experience of waking up in the recovery room. I felt very groggy and confused. I could hear the voice of an elderly man who was crying and demanding to be let out and the angry voice of a nurse telling him that he just finished surgery and he needed to calm down. When I could finally open my eyes and signal to a nurse, I felt a pain in my throat (they had to intubate me during the surgery) and I was incredibly thirsty. And I wanted to know where Matthew and my mother were. The nurse found Matthew, they wheeled me to my private room (with my mother meeting me en-route), and they told me how to work the pain meds (which I immediately did click).
This all happened a year ago. Literally. It's now 6:05pm and I got out of surgery at about this time a year ago. And it seems so odd that I went through this experience. A friend just yesterday asked if I felt disconnected from the experience--as if this all happened to someone else. And that's not how I feel at all--I definitely felt it, I definitely lived it.
And now?
Now...I'm trying to figure out what it's like to have gone through this. Not in a way that will give me closure--there isn't real closure for me about this. I'm trying to find a language and a way to tell this story, I suppose (this is the professional/academic part of me coming out--the side of me that thinks in terms of narrative). I'm trying to make sense of this experience--of trying to sort out my feelings about all of this--what I went through in the past and how I'm dealing with this now.
One of the things that I've been trying to sort out is, just how bad was it? I think there are multiple reasons I ask this. One is that it's partly my nature--I pride myself in being the person who tries to suck it up and push through and not whine about how hard things are. Did going through chemotherapy suck? Was losing my breasts hard? Yes and yes. But I'm alive. And compared to others--those who are facing metastic cancer, breast or otherwise, I seem to be doing pretty well. And compared to relatives who have died from cancer (an uncle to colon cancer, an aunt to leukemia), my treatment was not that bad and my prognosis is definitely good.
And truthfully, I don't know that when I was going through everything that I felt like I was suffering. Yes, chemotherapy is toxic--it's a hard treatment to endure. I lost my hair. My taste buds changed. I developed neuropathy in my fingers. I was constantly fatigued. And recovering from surgery was hard. I still feel twinges of pain from the scars where my drains came out of my body. But I don't know that I felt like I was struggling. Maybe because I had A LOT of support. Maybe because I had a lot of information. Maybe because I had wonderful examples of women who survived and are now thriving, who had once been diagnosed with breast cancer.
So there's a part of me that feels like what I went through, while hard, wasn't THAT hard--that I didn't experience it as a constant trauma.
And yet.
I feel traumatized.
Do I contradict myself? Very well, then I contradict myself. I am large. I contain multitudes.
[and yes, I just plagiarized from Walt Whitman--although is it plagiarism when you admit the source?]
And that's the rub. On the one hand, I feel that what I went through was manageable and not that bad and that as someone who lived through this experience, the important thing is that I LIVED through it--and I did so relatively intact and without experiencing any seriously horrible side-effects--and I had HUGE HUGE support.
But on the other hand...I'm forever altered. I am literally deformed. De-formed. I have grief for my breasts and the sense of what if...what if it comes back...what if I am one of the women who develops metastic breast cancer...
So it's been a year since my surgery. And to commemorate this year anniversary, I decided to alter my body through a piece of permanent body art--a tattoo:
[view of tattoo on the inside of my left ankle]
[close-up of lotus tattoo]
I chose a lotus because of its symbolism of renewal--of beauty born from the muck and mud--and of its Buddhist symbolism of enlightenment and progress. I miss my breasts but I love my tattoo and I'm certainly glad to be alive.
And then there was the very disorienting experience of waking up in the recovery room. I felt very groggy and confused. I could hear the voice of an elderly man who was crying and demanding to be let out and the angry voice of a nurse telling him that he just finished surgery and he needed to calm down. When I could finally open my eyes and signal to a nurse, I felt a pain in my throat (they had to intubate me during the surgery) and I was incredibly thirsty. And I wanted to know where Matthew and my mother were. The nurse found Matthew, they wheeled me to my private room (with my mother meeting me en-route), and they told me how to work the pain meds (which I immediately did click).
This all happened a year ago. Literally. It's now 6:05pm and I got out of surgery at about this time a year ago. And it seems so odd that I went through this experience. A friend just yesterday asked if I felt disconnected from the experience--as if this all happened to someone else. And that's not how I feel at all--I definitely felt it, I definitely lived it.
And now?
Now...I'm trying to figure out what it's like to have gone through this. Not in a way that will give me closure--there isn't real closure for me about this. I'm trying to find a language and a way to tell this story, I suppose (this is the professional/academic part of me coming out--the side of me that thinks in terms of narrative). I'm trying to make sense of this experience--of trying to sort out my feelings about all of this--what I went through in the past and how I'm dealing with this now.
One of the things that I've been trying to sort out is, just how bad was it? I think there are multiple reasons I ask this. One is that it's partly my nature--I pride myself in being the person who tries to suck it up and push through and not whine about how hard things are. Did going through chemotherapy suck? Was losing my breasts hard? Yes and yes. But I'm alive. And compared to others--those who are facing metastic cancer, breast or otherwise, I seem to be doing pretty well. And compared to relatives who have died from cancer (an uncle to colon cancer, an aunt to leukemia), my treatment was not that bad and my prognosis is definitely good.
And truthfully, I don't know that when I was going through everything that I felt like I was suffering. Yes, chemotherapy is toxic--it's a hard treatment to endure. I lost my hair. My taste buds changed. I developed neuropathy in my fingers. I was constantly fatigued. And recovering from surgery was hard. I still feel twinges of pain from the scars where my drains came out of my body. But I don't know that I felt like I was struggling. Maybe because I had A LOT of support. Maybe because I had a lot of information. Maybe because I had wonderful examples of women who survived and are now thriving, who had once been diagnosed with breast cancer.
So there's a part of me that feels like what I went through, while hard, wasn't THAT hard--that I didn't experience it as a constant trauma.
And yet.
I feel traumatized.
Do I contradict myself? Very well, then I contradict myself. I am large. I contain multitudes.
[and yes, I just plagiarized from Walt Whitman--although is it plagiarism when you admit the source?]
And that's the rub. On the one hand, I feel that what I went through was manageable and not that bad and that as someone who lived through this experience, the important thing is that I LIVED through it--and I did so relatively intact and without experiencing any seriously horrible side-effects--and I had HUGE HUGE support.
But on the other hand...I'm forever altered. I am literally deformed. De-formed. I have grief for my breasts and the sense of what if...what if it comes back...what if I am one of the women who develops metastic breast cancer...
So it's been a year since my surgery. And to commemorate this year anniversary, I decided to alter my body through a piece of permanent body art--a tattoo:
[view of tattoo on the inside of my left ankle]
[close-up of lotus tattoo]
I chose a lotus because of its symbolism of renewal--of beauty born from the muck and mud--and of its Buddhist symbolism of enlightenment and progress. I miss my breasts but I love my tattoo and I'm certainly glad to be alive.
Friday, October 7, 2011
Not just a film, my life
So yesterday I saw the film 50/50. I had blogged about it earlier and had been eager to watch it because it seemed at least in the trailers, to be a frank and funny look at what it is like to get a cancer diagnosis and go through treatment. What I wasn’t prepared for was that it was also very heartfelt. Many cancer films often, intentionally or not, traffic in sentimentality—there is the stirring music, the sick patient lying stoicly in the hospital room, the tragic revelation of disease or death.
There wasn’t anything sentimental about this film. It was one of the things I had been hoping for—an unsentimental look at cancer. But that doesn’t mean that it wasn’t hard—that it wasn’t emotionally stirring. Because in its direct approach and in the portrayal of this man’s experience going to chemo and having surgery, it so vividly mirrored my own experience—the kind of prosaic nature of what it’s like to sit in a chemo chair for 4 hours, the kinds of conversations you strike up with folks in neighboring chairs. The fear that you try not to show or even acknowledge to yourself let alone to others, and yet that does surface, as it will surface, when you are wondering whether the treatment is working. Whether you will survive this surgery.
And it was the scene of the surgery in particular that really caught me off guard. I’m not going to give anything away (and the fact that he has surgery is also not something that anyone who is going to watch a cancer film is going to be surprised at either hopefully) but I did want to explain what it was that hit me in the gut. It was his vulnerability. And I don’t necessarily mean what the actor portrayed (although I do think that Joseph Gordon-Levitt did a great job in this scene of portraying vulnerability)—I guess what I mean is the simple image of seeing him in a gown on a gurney about to be wheeled into surgery, saying good-bye to his mother and talking to the anesthesiologist about not being sure whether they’d give you enough drugs so that you wouldn’t wake up in the middle of the procedure or that they would give you too much so that you wouldn’t wake up in recovery.
Apparently these were the exact questions I asked before my own surgery. I don’t remember—the whole thing was a blur. But when we were driving back from the film yesterday Matthew reminded me that I asked my own anesthesiologist these very questions. And he admitted that he cried in this scene because it was so real—because just a year ago, that had been me, with Matthew and my Mom—saying good-bye to me before being wheeled in to have my double-mastectomy surgery.
The weird thing is, I don’t remember being nervous. I’m pretty sure that they slipped in some anti-anxiety meds in my i.v. line (smart thing), so what I recall isn’t panic or fear but just a sense of calm. I remember feeling like it would all be OK, I’d take a nap and then I’d wake up and…
I suppose it’s the “and” that I didn’t know how to wrap my mind around. And in some ways still don’t. Which is why seeing that character being wheeled into surgery just hit me in the gut. Because he said all the things I had been thinking and feeling and a year later, still carry with me. The grief of a cancer diagnosis—of my cancer diagnosis—hasn’t resolved. I wonder whether it will.
There wasn’t anything sentimental about this film. It was one of the things I had been hoping for—an unsentimental look at cancer. But that doesn’t mean that it wasn’t hard—that it wasn’t emotionally stirring. Because in its direct approach and in the portrayal of this man’s experience going to chemo and having surgery, it so vividly mirrored my own experience—the kind of prosaic nature of what it’s like to sit in a chemo chair for 4 hours, the kinds of conversations you strike up with folks in neighboring chairs. The fear that you try not to show or even acknowledge to yourself let alone to others, and yet that does surface, as it will surface, when you are wondering whether the treatment is working. Whether you will survive this surgery.
And it was the scene of the surgery in particular that really caught me off guard. I’m not going to give anything away (and the fact that he has surgery is also not something that anyone who is going to watch a cancer film is going to be surprised at either hopefully) but I did want to explain what it was that hit me in the gut. It was his vulnerability. And I don’t necessarily mean what the actor portrayed (although I do think that Joseph Gordon-Levitt did a great job in this scene of portraying vulnerability)—I guess what I mean is the simple image of seeing him in a gown on a gurney about to be wheeled into surgery, saying good-bye to his mother and talking to the anesthesiologist about not being sure whether they’d give you enough drugs so that you wouldn’t wake up in the middle of the procedure or that they would give you too much so that you wouldn’t wake up in recovery.
Apparently these were the exact questions I asked before my own surgery. I don’t remember—the whole thing was a blur. But when we were driving back from the film yesterday Matthew reminded me that I asked my own anesthesiologist these very questions. And he admitted that he cried in this scene because it was so real—because just a year ago, that had been me, with Matthew and my Mom—saying good-bye to me before being wheeled in to have my double-mastectomy surgery.
The weird thing is, I don’t remember being nervous. I’m pretty sure that they slipped in some anti-anxiety meds in my i.v. line (smart thing), so what I recall isn’t panic or fear but just a sense of calm. I remember feeling like it would all be OK, I’d take a nap and then I’d wake up and…
I suppose it’s the “and” that I didn’t know how to wrap my mind around. And in some ways still don’t. Which is why seeing that character being wheeled into surgery just hit me in the gut. Because he said all the things I had been thinking and feeling and a year later, still carry with me. The grief of a cancer diagnosis—of my cancer diagnosis—hasn’t resolved. I wonder whether it will.
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