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.
Sunday, September 18, 2011
Pink Ribbon Inc & 50/50 -- cancer films for a new generation
So I'm sure we are all familiar with the very emotional and sentimental films featuring stoic women (and usually they are women although sometimes, as in Brian's Song, they are men). Love Story and Terms of Endearment top the list of these sorts of films.
Well, Pink Ribbon Inc. and 50/50 do not seem to fit into that mold.
Neither of these films is out, just yet. But my friend Anita sent me the trailer to Pink Ribbons Inc. and I am very excited to see this film when it comes out (hopefully in early 2012, although I may spring for the DVD which you can buy on their website). The Canadian filmmakers who produced this film were inspired by Samantha King's book of the same name--the film, like the book, seems to take a critical look at the pink ribbon industry that has been built up over the last decade--the many different consumer items that are branded with the pink ribbon and sold in the name of research and finding a cure. Which makes it feel like you are making a profit off of a disease--at least it makes me feel that way sometimes depending on my mood. I still see those pink ribbons everywhere--most recently on a box of Morton's Salt that I bought at my local grocery store. There were two boxes of salt sold for the same price, one had a pink ribbon and the other didn't. Not sure why--wouldn't it seem as if the box with the pink ribbon should be more expensive because if Morton's is giving money for breast cancer research it would want people buying the pink ribbon salt to pay a nickel more to help women with breast cancer?
I know I've written about King's book and my own reaction to Pink Ribbon commercialization before (click here). I hope this film reaches a lot of people--certainly more people would watch this film than would pick up King's book, so I'm glad in that way that her message and the critique of the corporatization of the pink ribbon will get the audience it deserves--and hopefully will get people thinking about what they are buying when they make a conscious choice to purchase a pink ribbon item.
As for the film 50/50, I saw the trailer in the movie theater recently and became VERY EXCITED because this seems to be a film geared towards the average person who either has had a cancer diagnosis and/or their friends and family--and we all just are overwhelmed and clueless about how to proceed. Today one of the stars and writer/producer's of the film, Seth Rogen, along with his friend and co-writer and inspiration for the film, Will Reiser, were on Weekend Edition Sunday talking about making the film and about Reiser's own cancer diagnosis (which the film is loosely based upon). Listening to them talk about making the film was refreshing. Because the truth is, when you have this diagnosis, when you are living with cancer and going through treatment, there are so MANY THINGS THAT SEEM ABSURD. And you or at least I couldn't dwell on the tragedy of it all and had to see the comedy or the absurdity in my situation. And being able to laugh is a great therapy in and of itself. As is anger, I think--which is why I titled the blog No Fucking Pink Ribbons.
Anyway, I leave you with trailers for both films--50/50 will open on September 30 and I hope Pink Ribbons Inc. comes to my local independent theater--if not, I'm definitely springing for the film, because I know it is a must watch for me.
PINK RIBBONS INC.
[click here for an LA Times review of the film]
50/50
Well, Pink Ribbon Inc. and 50/50 do not seem to fit into that mold.
Neither of these films is out, just yet. But my friend Anita sent me the trailer to Pink Ribbons Inc. and I am very excited to see this film when it comes out (hopefully in early 2012, although I may spring for the DVD which you can buy on their website). The Canadian filmmakers who produced this film were inspired by Samantha King's book of the same name--the film, like the book, seems to take a critical look at the pink ribbon industry that has been built up over the last decade--the many different consumer items that are branded with the pink ribbon and sold in the name of research and finding a cure. Which makes it feel like you are making a profit off of a disease--at least it makes me feel that way sometimes depending on my mood. I still see those pink ribbons everywhere--most recently on a box of Morton's Salt that I bought at my local grocery store. There were two boxes of salt sold for the same price, one had a pink ribbon and the other didn't. Not sure why--wouldn't it seem as if the box with the pink ribbon should be more expensive because if Morton's is giving money for breast cancer research it would want people buying the pink ribbon salt to pay a nickel more to help women with breast cancer?
I know I've written about King's book and my own reaction to Pink Ribbon commercialization before (click here). I hope this film reaches a lot of people--certainly more people would watch this film than would pick up King's book, so I'm glad in that way that her message and the critique of the corporatization of the pink ribbon will get the audience it deserves--and hopefully will get people thinking about what they are buying when they make a conscious choice to purchase a pink ribbon item.
As for the film 50/50, I saw the trailer in the movie theater recently and became VERY EXCITED because this seems to be a film geared towards the average person who either has had a cancer diagnosis and/or their friends and family--and we all just are overwhelmed and clueless about how to proceed. Today one of the stars and writer/producer's of the film, Seth Rogen, along with his friend and co-writer and inspiration for the film, Will Reiser, were on Weekend Edition Sunday talking about making the film and about Reiser's own cancer diagnosis (which the film is loosely based upon). Listening to them talk about making the film was refreshing. Because the truth is, when you have this diagnosis, when you are living with cancer and going through treatment, there are so MANY THINGS THAT SEEM ABSURD. And you or at least I couldn't dwell on the tragedy of it all and had to see the comedy or the absurdity in my situation. And being able to laugh is a great therapy in and of itself. As is anger, I think--which is why I titled the blog No Fucking Pink Ribbons.
Anyway, I leave you with trailers for both films--50/50 will open on September 30 and I hope Pink Ribbons Inc. comes to my local independent theater--if not, I'm definitely springing for the film, because I know it is a must watch for me.
PINK RIBBONS INC.
[click here for an LA Times review of the film]
50/50
Friday, September 2, 2011
Shaoliang
Let me tell you about my Aunt Teri. When I was growing up, I had 2 Aunts named Teresa--with different middle names. So as a way to distinguish them, I called the youngest one, Shaoliang, which my father said meant "little aunt" in Mandarin. It, apparently, also sounds close to "little sheep" and so I used to draw a picture of a little sheep when I would write letters to her.
My Aunt Teri was one of those people who created community wherever she lived--and she and my Uncle moved around to various places throughout their lives. But she really had a knack of cultivating friendships of a breadth and depth that is unusual--in other words, she has both a very large and intimate circle of friends from every place she has ever lived.
When I recently confessed to her that I was nervous at the thought of being a parent (Matthew and I are looking into adoption--which will be the subject of a future post, I'm sure--what it's like to be a breast cancer survivor going through the domestic adoption process) and when I asked her whether she had ever been nervous, she told me that she had always known that she wanted to be a mother--that it was one of the things she was most proud of--and that she knew that it was what she was meant to do--be a Mom--be someone who could give unconditional love to children.
My Aunt Teri was a stubborn person--a trait common on both sides of my family. She had stores of compassion but also stores of stuborness--she was not a pushover but could assert herself in a caring yet forceful way. There were times when she would not take no for an answer. She knew how to fight for what she wanted--for what she felt was right--for what was important.
This morning my Aunt Teri passed away after complications due to her marrow transplant, which was a result of being diagnosed with Acute Myeloid Leukemia in February 2010 (2 months before my own breast cancer diagnosis). I got the call right before my 10am class--and I had to shut the door on my emotions in order to get through class (something I've learned to be good at--compartementalizing that is, because I got the news about my cancer diagnosis half an hour before a grad seminar a year and a half ago). Although I've teared up throughout the day--and gotten choked up--I haven't yet had a proper cry. As I told one cousin, I feel emotionally constipated--I can feel something sitting inside my chest, wanting to be let out. And I trust that when the moment is right, my emotions will come spilling out.
When I got my breast cancer diagnosis, my aunt was one of the first people to call and reach out to me. She shared helpful hints and suggestions about going through chemo and things to eat. We talked about our similar experiences--and the differences in our cancer treatment and care. We were connected in this intimate manner, which I know is something neither of us wanted to have happen. This is the fourth relative I've had die of cancer--the first on my father's side. It all feels surreal--the number of family I've had who have died of various cancers.
My Aunt Teri was one of my favorite people. She was someone I confided in and trusted. She is someone I love wholeheartedly and who will always live in my heart. And I will always miss her. Always.
[a picture of Teri and me when I was a very young youngster and she was in the prime of her youth]
My Aunt Teri was one of those people who created community wherever she lived--and she and my Uncle moved around to various places throughout their lives. But she really had a knack of cultivating friendships of a breadth and depth that is unusual--in other words, she has both a very large and intimate circle of friends from every place she has ever lived.
When I recently confessed to her that I was nervous at the thought of being a parent (Matthew and I are looking into adoption--which will be the subject of a future post, I'm sure--what it's like to be a breast cancer survivor going through the domestic adoption process) and when I asked her whether she had ever been nervous, she told me that she had always known that she wanted to be a mother--that it was one of the things she was most proud of--and that she knew that it was what she was meant to do--be a Mom--be someone who could give unconditional love to children.
My Aunt Teri was a stubborn person--a trait common on both sides of my family. She had stores of compassion but also stores of stuborness--she was not a pushover but could assert herself in a caring yet forceful way. There were times when she would not take no for an answer. She knew how to fight for what she wanted--for what she felt was right--for what was important.
This morning my Aunt Teri passed away after complications due to her marrow transplant, which was a result of being diagnosed with Acute Myeloid Leukemia in February 2010 (2 months before my own breast cancer diagnosis). I got the call right before my 10am class--and I had to shut the door on my emotions in order to get through class (something I've learned to be good at--compartementalizing that is, because I got the news about my cancer diagnosis half an hour before a grad seminar a year and a half ago). Although I've teared up throughout the day--and gotten choked up--I haven't yet had a proper cry. As I told one cousin, I feel emotionally constipated--I can feel something sitting inside my chest, wanting to be let out. And I trust that when the moment is right, my emotions will come spilling out.
When I got my breast cancer diagnosis, my aunt was one of the first people to call and reach out to me. She shared helpful hints and suggestions about going through chemo and things to eat. We talked about our similar experiences--and the differences in our cancer treatment and care. We were connected in this intimate manner, which I know is something neither of us wanted to have happen. This is the fourth relative I've had die of cancer--the first on my father's side. It all feels surreal--the number of family I've had who have died of various cancers.
My Aunt Teri was one of my favorite people. She was someone I confided in and trusted. She is someone I love wholeheartedly and who will always live in my heart. And I will always miss her. Always.
[a picture of Teri and me when I was a very young youngster and she was in the prime of her youth]
Wednesday, August 31, 2011
The break from blogging and cancer
So first of all, an apology. Both for the long lapse between blog posts (I knew it had been a while, but June 5??? That's a REALLY long time) and for not explaining that I'd be taking a break from blogging.
Of course, the truth is, I didn't realize that I was taking a break from blogging. Maybe more specifically, taking a break from thinking about cancer. My cancer. My post-cancer life. Being N.E.D. (no evidence of disease). But a while ago, when someone asked me if I was still blogging on this site, I said that I wanted to take a break from thinking of myself as someone with cancer or someone who had had cancer.
But I should have said this all in a brief post--especially because looking at the last post, where I'm about to see whether I have a cyst or malignancy on my uterus, it leaves people wondering a bit. So the first thing I'll say is that my ultrasound was clear. All is good. And my follow-up appointment with my surgeon was also good (I think that happened a few days after I wrote the last post). I'm taking Tamoxifen, and aside from a few hot flashes, mostly at night (2-3 episodes), I don't seem to be having any side effects. I am, by all physical evidence at least, the vision of health. I've been exercising and lost a few of the pounds I gained in the spring semester when I was too weary to do anything beyond teach and sleep. My mental health is good--or at least I'm no longer experiencing a low level depression. And there doesn't seem to be any signs of cancer in my body that they can detect through blood work of physical examination--and my body seems to be holding up pretty well so far, meaning I'm having no other health issues and feel fine.
So I'm a healthy person. I look like a healthy person. I feel like a healthy person.
Yet there is that little question in the back of my mind--am I? Or perhaps more accurately, "for how long?" Because truthfully, even if I never have a recurrence, as my body ages I will probably have some kind of health issue where I experience a period of not being well--of being disabled--of being ill. We all will. It's a sobering thought. And the fact that I think this way is probably a sign both of what I've recently experienced with cancer/chemo/surgery as well as a sign that I'm getting older and recognizing that my 41 year old body is not my 21 year old body and will one day be a 61 year old body with different types of challenges (joints, I'm told, become a problem as we age). In other words, these are the musings of a middle-age person not of a young, vibrant 20-something or teen or even 30 something person--at least not someone who hasn't been through or witnessed intimately the deterioration of someone else's body or their own for a period of time.
Anyway, I thought about whether I wanted to take this blog down, but I think that there are still things I'm exploring and figuring out about living my life post-cancer. And there are certainly things about cancer in the world that I think are worth commenting on--like this piece in The New York Times about the language of cancer--especially all those "fighting" words we associate with the disease. And there's the presentation I gave at the annual meeting of the Association of Asian American Studies--one that talked about my experiences with getting breast cancer and the lack of Asian American models and stories out there. It was the most intimate presentation I have ever given--and while I was nervous when I first started to read my paper, by the end I had found my stride and really felt comfortable talking about what I'd been through, both from a personal as well as intellectual point-of-view.
So I'm not done blogging here. I may not be updating on a regular basis--there will probably be weeks between posts. But if you are curious about what life is like for one particular former stage 2 breast cancer patient, please continue to tune in.
Of course, the truth is, I didn't realize that I was taking a break from blogging. Maybe more specifically, taking a break from thinking about cancer. My cancer. My post-cancer life. Being N.E.D. (no evidence of disease). But a while ago, when someone asked me if I was still blogging on this site, I said that I wanted to take a break from thinking of myself as someone with cancer or someone who had had cancer.
But I should have said this all in a brief post--especially because looking at the last post, where I'm about to see whether I have a cyst or malignancy on my uterus, it leaves people wondering a bit. So the first thing I'll say is that my ultrasound was clear. All is good. And my follow-up appointment with my surgeon was also good (I think that happened a few days after I wrote the last post). I'm taking Tamoxifen, and aside from a few hot flashes, mostly at night (2-3 episodes), I don't seem to be having any side effects. I am, by all physical evidence at least, the vision of health. I've been exercising and lost a few of the pounds I gained in the spring semester when I was too weary to do anything beyond teach and sleep. My mental health is good--or at least I'm no longer experiencing a low level depression. And there doesn't seem to be any signs of cancer in my body that they can detect through blood work of physical examination--and my body seems to be holding up pretty well so far, meaning I'm having no other health issues and feel fine.
So I'm a healthy person. I look like a healthy person. I feel like a healthy person.
Yet there is that little question in the back of my mind--am I? Or perhaps more accurately, "for how long?" Because truthfully, even if I never have a recurrence, as my body ages I will probably have some kind of health issue where I experience a period of not being well--of being disabled--of being ill. We all will. It's a sobering thought. And the fact that I think this way is probably a sign both of what I've recently experienced with cancer/chemo/surgery as well as a sign that I'm getting older and recognizing that my 41 year old body is not my 21 year old body and will one day be a 61 year old body with different types of challenges (joints, I'm told, become a problem as we age). In other words, these are the musings of a middle-age person not of a young, vibrant 20-something or teen or even 30 something person--at least not someone who hasn't been through or witnessed intimately the deterioration of someone else's body or their own for a period of time.
Anyway, I thought about whether I wanted to take this blog down, but I think that there are still things I'm exploring and figuring out about living my life post-cancer. And there are certainly things about cancer in the world that I think are worth commenting on--like this piece in The New York Times about the language of cancer--especially all those "fighting" words we associate with the disease. And there's the presentation I gave at the annual meeting of the Association of Asian American Studies--one that talked about my experiences with getting breast cancer and the lack of Asian American models and stories out there. It was the most intimate presentation I have ever given--and while I was nervous when I first started to read my paper, by the end I had found my stride and really felt comfortable talking about what I'd been through, both from a personal as well as intellectual point-of-view.
So I'm not done blogging here. I may not be updating on a regular basis--there will probably be weeks between posts. But if you are curious about what life is like for one particular former stage 2 breast cancer patient, please continue to tune in.
Sunday, June 5, 2011
The fear of recurrence and other side effects
About 3 months ago, I had an appointment with my Ob-Gyn. Now this may be TMI (isn't this whole blog TMI???) but the reason I went in was that my period had come back WITH A VENGANCE. I suppose after not having a period for nearly 9 months it's not unexpected to have the floodgates open, so to speak. But it freaked me out--especially because 9 months prior to my cancer diagnosis I had had surgery to remove some fibroids that had caused serious bleeding issues to the point where they had to infuse me with 3 bags of blood prior to my surgery to get my hematacrit & hemoglobin levels to the point where they could do surgery (yep, I was that bad off--if I was alive a century ago I'd be dead by now -- and not from the cancer but from the fibroids).
Anyway, during the ultrasound of my uterus a spot was found on my ovaries. It could have been simply a residual spot from having recently had my period. Or it could be a benign cyst. Or a malignant tumor.
When I met with my gynecologist, he wanted to see me in another month and repeat the ultrasound because given my recent cancer history, he thought it was better to be on the safe side. And the good news is that when they repeated the exam, the spot had disappeared.
Was I worried? Not terribly. I suppose I figured the law of averages would kick in--like, I couldn't possibly be diagnosed with ovarian cancer less than a year after being diagnosed with breast cancer, right? And I tend not to worry until I need to worry--at least not consciously worry.
But the truth is, I am afraid of recurrence. How could I not be? The tamoxifen treatment that I'm on has certain side effects and risks associated with it--namely the risk of developing a fatal type of uterine cancer. The percentage of women who develop this type of uterine cancer while on the tamoxifen treatment is very small--certainly statistically smaller than the advantages to being on tamoxifen for 5 years. So I take this daily pill and hope for the best.
Yet it freaks me out to think that my body, in reaction to this hormone therapy that is supposed to prevent the original breast cancer tumor cells from spreading to other parts of my body may, in fact, be creating new types of cancer cells in my uterus. And when I say it freaks me out, it's not like I want to get a hysterectomy or that I worry about it every day.
But when I read this report in The New York Times last night, I was first of all very glad to hear that tamoxifen and other treatments that they give to women after a breast cancer diagnosis are now being used to prevent breast cancer from every occurring--that these drugs are being used as a preventative, prophylactic measure.
However, it was a jolt to read that among the serious side effects of tamoxifen are blood clots--and of course the National Cancer Institute has a Question & Answer page that lists, clearly, what the negative side effects are--and right there are blood clots, strokes, uterine cancer, and cataracts.
How can I police my body for these issues? Should I wonder every time I feel a tingling in my arm? A cramp in my abdomen? A blurring in my eyes? I don't want to turn into a hypocondriac. And quite frankly, uterine cancer can be very hard to detect early since we don't have access to our uterus--I can't really see or feel it, except once a month, and then that's in the form of cramping--it's not like I can check around for a tumor by reaching inside my body and feeling around. I did get a baseline reading on my eyes from the wonderful folks at Carrboro Family Vision and the amazing Dr. Jason Chow. So far my eyes look like the eyes of a healthy 41 year old woman (meaning, I probably need bi-focals in 4 years, but that's part and parcel with aging).
I guess I'm musing about these things because I think, in part, I have to live my life the way I lived my life prior to getting my cancer diagnosis--meaning, I can't worry about every little ache and pain. I can't worry about whether the cancer is going to come back on a daily basis. It might--and my follow-up appointments with my surgeon and oncologist and my regular physical with my primary care physician and appointments with my gynecologist, should be maintained to make sure that I'm doing OK. But I think I have to try to live with the fear of recurrence without letting that fear take over my life.
Anyway, during the ultrasound of my uterus a spot was found on my ovaries. It could have been simply a residual spot from having recently had my period. Or it could be a benign cyst. Or a malignant tumor.
When I met with my gynecologist, he wanted to see me in another month and repeat the ultrasound because given my recent cancer history, he thought it was better to be on the safe side. And the good news is that when they repeated the exam, the spot had disappeared.
Was I worried? Not terribly. I suppose I figured the law of averages would kick in--like, I couldn't possibly be diagnosed with ovarian cancer less than a year after being diagnosed with breast cancer, right? And I tend not to worry until I need to worry--at least not consciously worry.
But the truth is, I am afraid of recurrence. How could I not be? The tamoxifen treatment that I'm on has certain side effects and risks associated with it--namely the risk of developing a fatal type of uterine cancer. The percentage of women who develop this type of uterine cancer while on the tamoxifen treatment is very small--certainly statistically smaller than the advantages to being on tamoxifen for 5 years. So I take this daily pill and hope for the best.
Yet it freaks me out to think that my body, in reaction to this hormone therapy that is supposed to prevent the original breast cancer tumor cells from spreading to other parts of my body may, in fact, be creating new types of cancer cells in my uterus. And when I say it freaks me out, it's not like I want to get a hysterectomy or that I worry about it every day.
But when I read this report in The New York Times last night, I was first of all very glad to hear that tamoxifen and other treatments that they give to women after a breast cancer diagnosis are now being used to prevent breast cancer from every occurring--that these drugs are being used as a preventative, prophylactic measure.
However, it was a jolt to read that among the serious side effects of tamoxifen are blood clots--and of course the National Cancer Institute has a Question & Answer page that lists, clearly, what the negative side effects are--and right there are blood clots, strokes, uterine cancer, and cataracts.
How can I police my body for these issues? Should I wonder every time I feel a tingling in my arm? A cramp in my abdomen? A blurring in my eyes? I don't want to turn into a hypocondriac. And quite frankly, uterine cancer can be very hard to detect early since we don't have access to our uterus--I can't really see or feel it, except once a month, and then that's in the form of cramping--it's not like I can check around for a tumor by reaching inside my body and feeling around. I did get a baseline reading on my eyes from the wonderful folks at Carrboro Family Vision and the amazing Dr. Jason Chow. So far my eyes look like the eyes of a healthy 41 year old woman (meaning, I probably need bi-focals in 4 years, but that's part and parcel with aging).
I guess I'm musing about these things because I think, in part, I have to live my life the way I lived my life prior to getting my cancer diagnosis--meaning, I can't worry about every little ache and pain. I can't worry about whether the cancer is going to come back on a daily basis. It might--and my follow-up appointments with my surgeon and oncologist and my regular physical with my primary care physician and appointments with my gynecologist, should be maintained to make sure that I'm doing OK. But I think I have to try to live with the fear of recurrence without letting that fear take over my life.
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