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.
Monday, May 16, 2011
The vulnerability of cancer -- what happens when your body fails you
I know I haven't been writing on a regular basis in this blog. The semester really kicked my ass, energy wise. And then realizing that I was dealing with low-grade depression also left me for a loop (thank goodness for a great psychotherapist--I can't say enough positive things about Dr. Phyllis Hicks!). And of course the end of semester is always just a busy time--meeting with students, grading papers, tying up loose ends.
But perhaps I also haven't been writing because I've been taking a break from thinking about cancer or thinking about my cancer in particular. And I realize that I've been a bit allergic to thinking about myself as a cancer survivor or someone with cancer. It's not, exactly, that I want to pass as a healthy person (and by writing that, I don't mean to suggest that I'm not healthy right now, but as someone only a year past diagnosis and less than a year past chemo and surgery, I'm not exactly sure that "healthy" is what comes to mind when I think about my body) or to deny the experience that I had this past year with chemo and surgery--and the uncertainty that any cancer diagnosis brings. But I think I wanted to think of myself as "normal" again--or at least as not a cancer patient anymore.
Yet two weeks ago I was thrust in the belly of the beast so to speak--because I flew to Milwaukee to see a favorite aunt of mine (I'll call her "T" to protect her privacy and that of my uncle "B"). Aunt T was diagnosed with Acute Myeloid Leukemia last February. My original plan was to fly out to see her over the summer, but then 2 months later I received my own cancer diagnosis, so 2 weeks ago was the soonest I could fly out to spend any substantive time with her. Unfortunately that time was spent in the Bone Marrow Transplant ward, where she returned to after her successful haploidentical transplant (in her case a stem cell transplant from 2 different sources) due to infections she had developed, which also led to her malnutrition issues, which then led to edema (swelling). I had originally planned to visit her and to help with her homecare post-transplant surgery, but instead I found myself visiting her every day for the week that I was there, observing proper protocol for someone who is in an isolation room--meaning, I scrubbed my hands thoroughly and put on a paper gown before entering her room, and I scrubbed my hands thoroughly after I left.
[Note: these procedures were more to protect other bone marrow transplant patients from catching one of the infections that she developed rather than protecting her from anything I was bringing in, although I'm sure that must have helped]
The good news (because I should cut to the good news) is that my aunt is improving and the even better news is that the transplant seems to be working--her body is producing white and red blood cells--remission may well be part of her future.
But good news aside, it is sobering to visit anyone in a bone marrow transplant unit, regardless of the prognosis. It was a chance for me to see, very up close and personal, what happens to us when our bodies fail us--particularly when we receive a cancer diagnosis so extreme that it requires what seems to me to be a radical procedure--to erase one's immune system and source of blood and replace it with someone else's (or multiple someone else's in my aunt's case). Any transplant has risks and dangers involved--a bone marrow transplant is no different, and, indeed, is in many ways more risky, I think, because of the concern of the cancer coming back despite the pain and agony (physical but especially emotional and psychological) of the transplant.
I was worried before leaving for Milwaukee that I would feel freaked out--that seeing my aunt in the hospital and visiting her, particularly, in the BMT ward, would hit too close to home--would make me feel my own vulnerability regarding a cancer diagnosis too keenly. I was worried that I might freeze up around her--that I would be awkward and werid--would not know the right thing to say or do. I suppose in many ways I felt the way that others feel when confronted with a loved one who is sick or has cancer. I suppose in many ways I felt the way that many healthy people hearing about my breast cancer diagnosis felt--that they didn't know what to say or do and worried they might say the wrong thing.
And while the first two days were hard for me, emotionally, I quickly recognized that as hard as it might have been to see my aunt in her current state, it was much harder to BE my aunt. And being with her for a week was illuminating to me about how much she wants to live--how much she wants to fight her disease (her motto is "kicking butt" with respect to her cancer--perhaps we are both angry Asian American women when it comes to this disease). It was illuminating, to me, to see my aunt in her condition because I realized that at some point, this might be me or it might be someone else I love. And what I mean by that is, in spending time with my aunt in the BMT ward, I recognized the fragility and vulnerability of the human body.
I know I've written about this before, but my cancer diagnosis has had me thinking more and more about my own mortality and about what the end of my life will be like. It is uncertain--all of our lives are uncertain in that respect--but I feel after this recent experience with my aunt that I have a greater appreciation for what happens when our bodies start to fail us, regardless of the reason why and regardless of whether it's temporary (which I hope it is in my aunt's case) or permanent (as it will be eventually for all of us).
But perhaps I also haven't been writing because I've been taking a break from thinking about cancer or thinking about my cancer in particular. And I realize that I've been a bit allergic to thinking about myself as a cancer survivor or someone with cancer. It's not, exactly, that I want to pass as a healthy person (and by writing that, I don't mean to suggest that I'm not healthy right now, but as someone only a year past diagnosis and less than a year past chemo and surgery, I'm not exactly sure that "healthy" is what comes to mind when I think about my body) or to deny the experience that I had this past year with chemo and surgery--and the uncertainty that any cancer diagnosis brings. But I think I wanted to think of myself as "normal" again--or at least as not a cancer patient anymore.
Yet two weeks ago I was thrust in the belly of the beast so to speak--because I flew to Milwaukee to see a favorite aunt of mine (I'll call her "T" to protect her privacy and that of my uncle "B"). Aunt T was diagnosed with Acute Myeloid Leukemia last February. My original plan was to fly out to see her over the summer, but then 2 months later I received my own cancer diagnosis, so 2 weeks ago was the soonest I could fly out to spend any substantive time with her. Unfortunately that time was spent in the Bone Marrow Transplant ward, where she returned to after her successful haploidentical transplant (in her case a stem cell transplant from 2 different sources) due to infections she had developed, which also led to her malnutrition issues, which then led to edema (swelling). I had originally planned to visit her and to help with her homecare post-transplant surgery, but instead I found myself visiting her every day for the week that I was there, observing proper protocol for someone who is in an isolation room--meaning, I scrubbed my hands thoroughly and put on a paper gown before entering her room, and I scrubbed my hands thoroughly after I left.
[Note: these procedures were more to protect other bone marrow transplant patients from catching one of the infections that she developed rather than protecting her from anything I was bringing in, although I'm sure that must have helped]
The good news (because I should cut to the good news) is that my aunt is improving and the even better news is that the transplant seems to be working--her body is producing white and red blood cells--remission may well be part of her future.
But good news aside, it is sobering to visit anyone in a bone marrow transplant unit, regardless of the prognosis. It was a chance for me to see, very up close and personal, what happens to us when our bodies fail us--particularly when we receive a cancer diagnosis so extreme that it requires what seems to me to be a radical procedure--to erase one's immune system and source of blood and replace it with someone else's (or multiple someone else's in my aunt's case). Any transplant has risks and dangers involved--a bone marrow transplant is no different, and, indeed, is in many ways more risky, I think, because of the concern of the cancer coming back despite the pain and agony (physical but especially emotional and psychological) of the transplant.
I was worried before leaving for Milwaukee that I would feel freaked out--that seeing my aunt in the hospital and visiting her, particularly, in the BMT ward, would hit too close to home--would make me feel my own vulnerability regarding a cancer diagnosis too keenly. I was worried that I might freeze up around her--that I would be awkward and werid--would not know the right thing to say or do. I suppose in many ways I felt the way that others feel when confronted with a loved one who is sick or has cancer. I suppose in many ways I felt the way that many healthy people hearing about my breast cancer diagnosis felt--that they didn't know what to say or do and worried they might say the wrong thing.
And while the first two days were hard for me, emotionally, I quickly recognized that as hard as it might have been to see my aunt in her current state, it was much harder to BE my aunt. And being with her for a week was illuminating to me about how much she wants to live--how much she wants to fight her disease (her motto is "kicking butt" with respect to her cancer--perhaps we are both angry Asian American women when it comes to this disease). It was illuminating, to me, to see my aunt in her condition because I realized that at some point, this might be me or it might be someone else I love. And what I mean by that is, in spending time with my aunt in the BMT ward, I recognized the fragility and vulnerability of the human body.
I know I've written about this before, but my cancer diagnosis has had me thinking more and more about my own mortality and about what the end of my life will be like. It is uncertain--all of our lives are uncertain in that respect--but I feel after this recent experience with my aunt that I have a greater appreciation for what happens when our bodies start to fail us, regardless of the reason why and regardless of whether it's temporary (which I hope it is in my aunt's case) or permanent (as it will be eventually for all of us).
Wednesday, April 20, 2011
My year anniversary
It has been a year (over a year actually) since I was diagnosed with stage 2 breast cancer. The anniversary happened last Friday--April 15 (tax day). It is also the day after Matthew's birthday, so this year we spent Friday waiting for the Best Buy Geek Squad to come by because as a surprise for Matthew and in celebration of his 30th birthday (yes, he's a young'un) I got him a complete home theater system--as in a 46" plasma flat screen t.v. and a rotating wall mount that comes out 20 inches from the wall and a blu ray player that has wifi capability (yay for streaming Netflix and Pandora) and a copy of Inception. So Friday was spent waiting for the Best Buy guys. Because they give you this range (in our case it was 8-12pm) but then Elvis, our Geek tech, said he couldn't find the t.v., so by the time they got here (11:30am) and sussed out our place, and actually did the installation (which included cutting into the dry wall, going into the crawlspace underneath our house to route the cable to the new side of the living room where we were mounting the television) it was 3:30pm. And because I was battling the tail end of the adenovirus, it meant that I was pretty wiped out by the afternoon, so my plan of commemorating the day with a trip to the tattoo parlor to get a lotus tattoo put on my right ankle just didn't happen because I had a rip roaring headache and decided I should just lie down and nap (which I did in-between watching Netflix films in true couch potato style by lying down and barely moving from one spot).
So why am I sharing all of the mundane facts about my year cancer anniversary diagnosis? Because I have been thinking about how to honor and commemorate the day. And the plan, as modest as it was, was for me to get the t.v. installed in the morning and then go to the tattoo parlor in the afternoon. But the tattoo parlor was busy until 7pm and I was too tired, and truly, the best laid plans you can make for yourself can just end up falling by the wayside.
Which is OK. At least this is what I tell myself. The plans I have made for myself have often not come through--and certainly the caner diagnosis happening a year ago put on hold or indefinitely postponed many different plans that Matthew and I had for our lives together. Like our honeymoon (which we are taking this August) and our plans to start a family (which we are hoping to take the first of many steps taken over many months by attending an info session this summer about open adoption).
There's more that I've wanted to write in this space--about feeling better once I recognized that I was depressed, in large part because the recognition itself is therapeutic but also because I have an amazing therapist, Phyllis, who I can't say enough positive things about. And the warmer weather has also helped my mood--as has the increase, the slow increase, in my energy level--which got a boost by going to NYC over spring break and hanging out with my cousins Wayne and Craig. I also wanted to write about Relay for Life--which happened 2 weeks ago without me walking the survivor's opening lap because I was felled by the adenovirus, but truthfully I wasn't sure I was up for being clapped at while walking around the track (more on that later), and finally, I wanted to write about my decision to try to write, in a more formal and organized way, some of my story--about what it has been like for me to have this diagnosis.
Anyway, this isn't a very coherent post, I know. But it was a year ago today, April 20, 2010, that I wrote my first entry in this blog. And because I like symmetry and because I did want to mark the year anniversary of my diagnosis in some way, I thought it was high time that I broke my blogging silence and acknowledged that I've had a roller coaster of a year. I can't say that it's all been awful. I mean the awful stuff has been awful--I wouldn't wish chemo on my worst enemy, my hair falling out was horrific, my recovery from surgery was painful, and being faced with the potential reality that my life span may be cut short meant moments of fear, anxiety, and terror. But this past year also was the year I married Matthew and had a weekend full of family and friends and love and laughter and great food. And I turned in my tenure file in August and received the great news that the vote in my department was unanimous in February, and just this past Monday I received a phone call from my chair that the second hurdle was over (the College committee) and my file was on its way to the Provost's committee--which is essentially the 3rd and final hurdle. So there has been pleasure as well as pain, and light as well as darkness.
Which is pretty much what life is. Which means I don't think I really did learn any new or profound wisdom after being diagnosed with cancer. I think I just re-learned the things that I already knew--that life is unpredictable and you can make all the plans you want, but sometimes things happen and you just have to roll with them. Sometimes it's OK to just lie on the sofa watching Netflix films and napping. I tend to burn the candle at both ends so it's a good reminder and metaphor for me--that the world will not stop spinning on its axis if I'm not constantly in motion and if the plans I make don't actually happen.
I wish I had something more profound to share on my year anniversary, but maybe that's about as profound as I get. Or maybe it's appropriate because sometimes the profundity of a situation isn't going to just happen because I want to mark the anniversary of an event.
So why am I sharing all of the mundane facts about my year cancer anniversary diagnosis? Because I have been thinking about how to honor and commemorate the day. And the plan, as modest as it was, was for me to get the t.v. installed in the morning and then go to the tattoo parlor in the afternoon. But the tattoo parlor was busy until 7pm and I was too tired, and truly, the best laid plans you can make for yourself can just end up falling by the wayside.
Which is OK. At least this is what I tell myself. The plans I have made for myself have often not come through--and certainly the caner diagnosis happening a year ago put on hold or indefinitely postponed many different plans that Matthew and I had for our lives together. Like our honeymoon (which we are taking this August) and our plans to start a family (which we are hoping to take the first of many steps taken over many months by attending an info session this summer about open adoption).
There's more that I've wanted to write in this space--about feeling better once I recognized that I was depressed, in large part because the recognition itself is therapeutic but also because I have an amazing therapist, Phyllis, who I can't say enough positive things about. And the warmer weather has also helped my mood--as has the increase, the slow increase, in my energy level--which got a boost by going to NYC over spring break and hanging out with my cousins Wayne and Craig. I also wanted to write about Relay for Life--which happened 2 weeks ago without me walking the survivor's opening lap because I was felled by the adenovirus, but truthfully I wasn't sure I was up for being clapped at while walking around the track (more on that later), and finally, I wanted to write about my decision to try to write, in a more formal and organized way, some of my story--about what it has been like for me to have this diagnosis.
Anyway, this isn't a very coherent post, I know. But it was a year ago today, April 20, 2010, that I wrote my first entry in this blog. And because I like symmetry and because I did want to mark the year anniversary of my diagnosis in some way, I thought it was high time that I broke my blogging silence and acknowledged that I've had a roller coaster of a year. I can't say that it's all been awful. I mean the awful stuff has been awful--I wouldn't wish chemo on my worst enemy, my hair falling out was horrific, my recovery from surgery was painful, and being faced with the potential reality that my life span may be cut short meant moments of fear, anxiety, and terror. But this past year also was the year I married Matthew and had a weekend full of family and friends and love and laughter and great food. And I turned in my tenure file in August and received the great news that the vote in my department was unanimous in February, and just this past Monday I received a phone call from my chair that the second hurdle was over (the College committee) and my file was on its way to the Provost's committee--which is essentially the 3rd and final hurdle. So there has been pleasure as well as pain, and light as well as darkness.
Which is pretty much what life is. Which means I don't think I really did learn any new or profound wisdom after being diagnosed with cancer. I think I just re-learned the things that I already knew--that life is unpredictable and you can make all the plans you want, but sometimes things happen and you just have to roll with them. Sometimes it's OK to just lie on the sofa watching Netflix films and napping. I tend to burn the candle at both ends so it's a good reminder and metaphor for me--that the world will not stop spinning on its axis if I'm not constantly in motion and if the plans I make don't actually happen.
I wish I had something more profound to share on my year anniversary, but maybe that's about as profound as I get. Or maybe it's appropriate because sometimes the profundity of a situation isn't going to just happen because I want to mark the anniversary of an event.
Wednesday, March 9, 2011
The mourning and grief of cancer
So here's a confession: I've been depressed. I'm not exactly sure how long I've been depressed, but I definitely think it coincided with being back in the classroom, which means mid-January. Which means probably I've been carrying around a low-level funk for the last three months.
I've assumed that it would pass--this feeling of melancholy and sadness that seems to sit with me. I assumed that there is no rational reason for me to feel this way--that I am back in the classroom and resuming my life and so why would I feel depressed? Why should I feel sad? I'm alive. My hair grew back. I'm done with chemotherapy and surgery. The only current treatment I'm on is the tamoxifen.
And then today a friend and colleague who has been through a similar experience wrote to me and shared that this period that I'm in--the transition from diagnosis & treatment to life AFTER and INTO, in her phrase, "a new normal" or "new identity" was very difficult for her.
Reading that it hit me: it is difficult for me.
I walked to the grocery store and thought about the nature of my depression--just WHY I felt so sad, and I realized that I'm in a state of mourning: I am grieving for my life pre-cancer diagnosis.
There is so much grief and mourning that we associate with cancer--and usually we think of it specifically around someone's death--that cancer has claimed so many lives. And that certainly is true--that certainly is the existential heart of why cancer is so fearsome and difficult--because it does claim so many lives.
But there's another aspect of mourning and grief related to a cancer diagnosis--and that is the certainty of living your life without the knowledge of cancer. I no longer have that certainty.
Now, I just want to be clear. I am not fearful of a recurrence in the sense that I am hyper-anxious or that I'm doing or not doing things because I fear a cancer recurrence. I am also acutely aware that of the various kinds of cancer that one could be afflicted with, having stage 2 breast cancer that has not metastatized is not as traumatic a diagnosis as other kinds of cancer diagnoses. I say this not to rank cancers (because that's like ranking oppressions) but to acknowledge that in many ways I'm lucky. I have a type of cancer that has a lot of exposure/fund raising/research in which women, like myself, have benefitted materially. Once upon a time, breast cancer was a death sentence--and because of all those pink ribbons or more to the point, the money raised and used in research that the pink ribbons helped to bring about, I am the recipient of better treatment protocols and therapies.
But even if I think of stage 2 breast cancer as a "good" cancer--as a "curable" cancer--the truth is, I don't feel cured. I don't feel like I'm cancer free. I don't feel like a survivor.
I also don't feel jinxed or unlucky or fated to die an early death.
What I do feel is uncertainty. I am just not sure. Not sure whether the cancer will come back. Not sure if it does come back whether it will lead to an earlier death than I would have had. Not sure whether any other aches or pains or bumps on my body are indicative of cancer in other parts of my body that are harder for me to see--my ovaries, my uterus, my liver, my pancreas.
And I am in grief and mourning because I feel like however briefly I have thought about it--I am all too aware of my own mortality--of the fragility of my body--that at some point, whether because of cancer or some other force, I will one day die. And to think about your mortality, to feel it keenly, however briefly, is something that stays with you. It's like my mastectomy scars--it's not something I am conscious of 24/7, but it is a permanent reminder on my body, of my body, in my body.
I am also in grief and mourning over things that will no longer come to pass--most specifically having a biological child with Matthew. Perhaps this wouldn't have happened regardless of cancer. But the fertility issue was really complicated by chemo and made more impossible by my tamoxifen treatment. And then there's my age--being 41 doesn't exactly spell the height of fertility. So like I said, it's not like this was ever a lock for us--but knowing that my cancer treatments have shut that door has been part of my grief and mourning--even while we both recognize and are excited by a adoption plans (which we aren't enacting just yet since I'd like to say I'm a year cancer-free or at least post-surgery before starting any adoption procedures).
I wasn't going to write about any of this--it seemed all too personal and private. But then I thought it was important to put this out there. I'm not exactly sure who is reading this blog anymore, but I know that some people have found their way here because you may also be going through what I'm going through (or went through). And I thought that just as my friend reached out to me and shared part of her own difficulties during this moment of transition, it was important for me to also note that this period of transition is hard. I am sad. And I will be finding help--I've put a call out to a therapist and hopefully will be seeing her soon.
Finally, the last thing I'll leave you with is that I think my other reluctance to share this phase that I'm in, is feeling like I have to be strong and to reassure everyone that I'm OK. And I am OK, in the sense that I'm not having any pain or awful side effects -- and that exhaustion/fatigue are really the last lingering vestiges of chemo and surgery that I'm carrying with me in terms of cancer treatment. But in other ways, I'm really not OK. I'm not OK with having this diagnosis. Or having surgery to remove both my breasts. Or living with the tightness around my scars--or sometimes seeing myself in the shower or in the mirror and feeling this tiny shock of seeing myself as if for the first time, breastless.
I've assumed that it would pass--this feeling of melancholy and sadness that seems to sit with me. I assumed that there is no rational reason for me to feel this way--that I am back in the classroom and resuming my life and so why would I feel depressed? Why should I feel sad? I'm alive. My hair grew back. I'm done with chemotherapy and surgery. The only current treatment I'm on is the tamoxifen.
And then today a friend and colleague who has been through a similar experience wrote to me and shared that this period that I'm in--the transition from diagnosis & treatment to life AFTER and INTO, in her phrase, "a new normal" or "new identity" was very difficult for her.
Reading that it hit me: it is difficult for me.
I walked to the grocery store and thought about the nature of my depression--just WHY I felt so sad, and I realized that I'm in a state of mourning: I am grieving for my life pre-cancer diagnosis.
There is so much grief and mourning that we associate with cancer--and usually we think of it specifically around someone's death--that cancer has claimed so many lives. And that certainly is true--that certainly is the existential heart of why cancer is so fearsome and difficult--because it does claim so many lives.
But there's another aspect of mourning and grief related to a cancer diagnosis--and that is the certainty of living your life without the knowledge of cancer. I no longer have that certainty.
Now, I just want to be clear. I am not fearful of a recurrence in the sense that I am hyper-anxious or that I'm doing or not doing things because I fear a cancer recurrence. I am also acutely aware that of the various kinds of cancer that one could be afflicted with, having stage 2 breast cancer that has not metastatized is not as traumatic a diagnosis as other kinds of cancer diagnoses. I say this not to rank cancers (because that's like ranking oppressions) but to acknowledge that in many ways I'm lucky. I have a type of cancer that has a lot of exposure/fund raising/research in which women, like myself, have benefitted materially. Once upon a time, breast cancer was a death sentence--and because of all those pink ribbons or more to the point, the money raised and used in research that the pink ribbons helped to bring about, I am the recipient of better treatment protocols and therapies.
But even if I think of stage 2 breast cancer as a "good" cancer--as a "curable" cancer--the truth is, I don't feel cured. I don't feel like I'm cancer free. I don't feel like a survivor.
I also don't feel jinxed or unlucky or fated to die an early death.
What I do feel is uncertainty. I am just not sure. Not sure whether the cancer will come back. Not sure if it does come back whether it will lead to an earlier death than I would have had. Not sure whether any other aches or pains or bumps on my body are indicative of cancer in other parts of my body that are harder for me to see--my ovaries, my uterus, my liver, my pancreas.
And I am in grief and mourning because I feel like however briefly I have thought about it--I am all too aware of my own mortality--of the fragility of my body--that at some point, whether because of cancer or some other force, I will one day die. And to think about your mortality, to feel it keenly, however briefly, is something that stays with you. It's like my mastectomy scars--it's not something I am conscious of 24/7, but it is a permanent reminder on my body, of my body, in my body.
I am also in grief and mourning over things that will no longer come to pass--most specifically having a biological child with Matthew. Perhaps this wouldn't have happened regardless of cancer. But the fertility issue was really complicated by chemo and made more impossible by my tamoxifen treatment. And then there's my age--being 41 doesn't exactly spell the height of fertility. So like I said, it's not like this was ever a lock for us--but knowing that my cancer treatments have shut that door has been part of my grief and mourning--even while we both recognize and are excited by a adoption plans (which we aren't enacting just yet since I'd like to say I'm a year cancer-free or at least post-surgery before starting any adoption procedures).
I wasn't going to write about any of this--it seemed all too personal and private. But then I thought it was important to put this out there. I'm not exactly sure who is reading this blog anymore, but I know that some people have found their way here because you may also be going through what I'm going through (or went through). And I thought that just as my friend reached out to me and shared part of her own difficulties during this moment of transition, it was important for me to also note that this period of transition is hard. I am sad. And I will be finding help--I've put a call out to a therapist and hopefully will be seeing her soon.
Finally, the last thing I'll leave you with is that I think my other reluctance to share this phase that I'm in, is feeling like I have to be strong and to reassure everyone that I'm OK. And I am OK, in the sense that I'm not having any pain or awful side effects -- and that exhaustion/fatigue are really the last lingering vestiges of chemo and surgery that I'm carrying with me in terms of cancer treatment. But in other ways, I'm really not OK. I'm not OK with having this diagnosis. Or having surgery to remove both my breasts. Or living with the tightness around my scars--or sometimes seeing myself in the shower or in the mirror and feeling this tiny shock of seeing myself as if for the first time, breastless.
Friday, February 11, 2011
Cancer in the Classroom
Yesterday was a first for me--I used my identity as a "cancer" patient (or former cancer patient or cancer survivor--so hard to know which phrase is most apropos for me) to illustrate a point I was making in my Asian American lit and theory course. Right now we're reading NYU Law School professor Kenji Yoshino's Covering: The Hidden Assault on Our Civil Rights (click here for the link to the book's website). One of my students asked for a clarification of the key concept of Yoshino's book, namely how covering differs from passing.
Now, I'm very comfortable with using myself or elements from my life, especially in terms of my ethnicity, race, and gender, to help illuminate aspects of what I'm teaching--particularly when it's in a class on Asian American subjects. So it wasn't unusual for me to draw from my personal identity to clarify a theoretical concept related to race or identitarian issues. But it was DEFINITELY a first for me to draw from my most recent experiences with cancer.
And this is what I said.
If, during the middle of my chemotherapy treatments--the period in which I clearly lost my hair due to this treatment--I wore a wig and found myself at a dinner party with a group of people and I never brought up my cancer diagnosis or on-going chemotherapy treatment--if, in fact, when complimented on my new hairstyle, if I simply said thank you or didn't elaborate on the fact that I was wearing a wig, then I would be passing--I would be deliberately hiding my cancer diagnosis and masking the visible effects of my cancer treatment. I would be "passing" as a healthy person rather than as a cancer patient.
However, if I was open about my cancer diagnosis and my chemotherapy treatment, and the fact that I had lost my hair but then still wore a wig to this dinner party--either to not make others feel uncomfortable from the visible difference I present as a cancer patient or to make myself more comfortable to not be so visibly marked by my cancer--then I'd be "covering"--there is no denial about the fact that I have cancer, but I would also not draw any attention to my status as a cancer patient.
After I gave this example the students nodded their heads, and I moved on with the next phase of my lesson. But it was an odd feeling, realizing that I had just used my cancer as a way to illustrate an intellectual issue in the classroom--that I had so publicly performed my cancer identity for my students. Because what was odd wasn't the insertion of the personal with the professional--as I noted before, I've often used aspects of my identity in making or illustrating a point in the classroom. What was odd was realizing that I had integrated, seemingly seamlessly, the identity of a cancer patient/cancer survivor to the point where I COULD use it as an example in the classroom.
Is this an intellectual leap, for me, to accept and recognize the place of cancer in my life--to my sense of self? Is it now a part of my indelible identity in the same way that I think of my gender and race and ethnicity as immutable (even while, of course, recognizing that intellectually I know that these are also social constructs--can I ever turn off the academic in me)? Will I now be the professor who performs her cancer in the classroom or is this a consequence of time--that this experience being so fresh for me becomes yet another recent experience for me to draw from?
Now, I'm very comfortable with using myself or elements from my life, especially in terms of my ethnicity, race, and gender, to help illuminate aspects of what I'm teaching--particularly when it's in a class on Asian American subjects. So it wasn't unusual for me to draw from my personal identity to clarify a theoretical concept related to race or identitarian issues. But it was DEFINITELY a first for me to draw from my most recent experiences with cancer.
And this is what I said.
If, during the middle of my chemotherapy treatments--the period in which I clearly lost my hair due to this treatment--I wore a wig and found myself at a dinner party with a group of people and I never brought up my cancer diagnosis or on-going chemotherapy treatment--if, in fact, when complimented on my new hairstyle, if I simply said thank you or didn't elaborate on the fact that I was wearing a wig, then I would be passing--I would be deliberately hiding my cancer diagnosis and masking the visible effects of my cancer treatment. I would be "passing" as a healthy person rather than as a cancer patient.
However, if I was open about my cancer diagnosis and my chemotherapy treatment, and the fact that I had lost my hair but then still wore a wig to this dinner party--either to not make others feel uncomfortable from the visible difference I present as a cancer patient or to make myself more comfortable to not be so visibly marked by my cancer--then I'd be "covering"--there is no denial about the fact that I have cancer, but I would also not draw any attention to my status as a cancer patient.
After I gave this example the students nodded their heads, and I moved on with the next phase of my lesson. But it was an odd feeling, realizing that I had just used my cancer as a way to illustrate an intellectual issue in the classroom--that I had so publicly performed my cancer identity for my students. Because what was odd wasn't the insertion of the personal with the professional--as I noted before, I've often used aspects of my identity in making or illustrating a point in the classroom. What was odd was realizing that I had integrated, seemingly seamlessly, the identity of a cancer patient/cancer survivor to the point where I COULD use it as an example in the classroom.
Is this an intellectual leap, for me, to accept and recognize the place of cancer in my life--to my sense of self? Is it now a part of my indelible identity in the same way that I think of my gender and race and ethnicity as immutable (even while, of course, recognizing that intellectually I know that these are also social constructs--can I ever turn off the academic in me)? Will I now be the professor who performs her cancer in the classroom or is this a consequence of time--that this experience being so fresh for me becomes yet another recent experience for me to draw from?
Monday, January 17, 2011
I enjoy being a girl (even though I look like a boy)
Yesterday I was mistaken for a man. It happened at the Harris Teeter near Timberlyne up on MLK way. It was around 10am. I had just come from visiting Matthew at Cup of Joe and had on a Cup of Joe baseball cap (more like a Greek fisherman's cap), my flannel jacket from Nepal (it's black with multicolor bands at the wrists), and my yoga pants (which for me means my ankles are showing) with my keen slip ons. I mention this because I think if one were to see me, the entire me, there are sartorial signs that may read more as "feminine" than "masculine" or at least clothing you'd associate more with a woman (yoga pants), although I also recognize that some of my other clothing may have seemed either masculine or androgynous (baseball cap, keen shoes). The jacket probably just registered as "ethnic."
Anyway, I was standing in line with my basket and a checker appeared and said directly to me, "Sir, I can take you at that counter," pointing to the register to my left. I literally looked in back of me, wondering if perhaps I was mistaken in who he was speaking to, and then I realized that, no, it was ME, and I dutifully followed him.
And then I had to make a decision: do I say something or not say something. Do I try to pass as a guy or do I let him know he's made a mistake.
Since I am pretty sure that as low voiced as I *think* I am, I'm really not so low pitched as to be mistaken for a guy. I also think that upon closer inspection (like seeing the diamond wedding band that I wear or the bracelet on my wrist) the guy might realize his mistake and feel more embarrassed. So I said to him, "Even though I know I look like a guy, I'm actually a woman."
I said this without any judgment or inflection--just stated it as matter-of-factly as I could. The checker (a college aged kid) was pretty chagrined--apologized--but I smiled and told him it was my short hair that fooled him. And he smiled, relieved, and agreed that the hair was what made him think I was a man.
Which of course has led me to think about my gender identity--or the way that I present myself as a woman.
Because previous to my cancer/chemo/surgery, I would have told you that I exhibit pretty masculine traits. That I liked wearing men's shirts (especially oversized white button down shirts); that I used to sing tenor parts in the chorus during high school because there weren't enough boys to sing those parts; that I have that annoying "male" way of interrupting people during conversations and other verbal markers that signal a more masculine rather than feminine talking style. And, in general, I just would have said that I don't *feel* very feminine.
To which I now say: RUBBISH.
I mean, you don't know what it's like not to feel feminine until you lose your hair and your breasts.
I also think it was easy for me to say that I felt masculine, because my female identity and my hetero identity were so firmly entrenched and seemingly one and the same. In other words, I wonder to what degree it's easy for me, as a straight-identified, pre-bilateral mastectomy and pre-chemotherapy-loss-of-hair woman, to say that I identify as "masculine" or feel myself to have "masculine" traits when so many of my obvious physical features read "feminine"--including my clothes and accessories: necklaces, rings, dresses, etc... Even more androgynous clothing like jeans or suit jackets were tailored for women rather than men--as well as my shoes--they clearly read female.
Yet ever since the loss of my hair and the loss of my breasts, I've been thinking about my gender identity, in terms of my physical features. I've been wondering about what parts of me are still coded as feminine and which parts of me may truly seem to be more androgynous, more masculine. When I look at myself from the neck down wearing a t-shirt for example, I encounter a flat chest that resembles a boy's more than a woman's. And when I look at myself in the mirror, with my hair cropped close to my head, I see an uncanny resemblance to my male cousins. In fact, when I had my head shaved by Matthew back in July, my mother remarked that I in the photos I posted on this blog I looked just like my Uncle Hunter.
All of which has made me realize that as much as I may look like a boy, I actually do feel like a girl (or woman rather). I actually identify, quite strongly, with being a woman--because my mannerisms, my clothing choices, my body language, my voice, are all coded as feminine and all convey a sense of my womanliness. My missing breasts didn't make me more of a woman, nor more feminine. My hair, well that's a different story. I do think that short hair plus androgynous clothing can equal gender confusion. Which may be why I'm not sure if I'll be keeping my hair short. That as much as I like to academically think about ambiguity, I'm not sure how I feel about being in an ambiguously gendered body.
And yet there's a part of me that thinks that perhaps this is a time for me to explore androgyny--to explore what it means to occupy a body that is feminine without such feminine markers as longer hair and breasts. To think about what it may mean for me to either intentionally pass as male or to allow myself to be mis-read--to not have corrected the check-out clerk but to just let him make his own assumptions about who I am.
Something to think about as I more through space in this new body of mine and a key question for me to wonder about is: what will I feel like wearing a summer dress? Will this be a moment when I feel the full weight of the loss of my breasts and the loss of a part of my femininity? I suppose we'll have to wait until May to find out.
Anyway, I was standing in line with my basket and a checker appeared and said directly to me, "Sir, I can take you at that counter," pointing to the register to my left. I literally looked in back of me, wondering if perhaps I was mistaken in who he was speaking to, and then I realized that, no, it was ME, and I dutifully followed him.
And then I had to make a decision: do I say something or not say something. Do I try to pass as a guy or do I let him know he's made a mistake.
Since I am pretty sure that as low voiced as I *think* I am, I'm really not so low pitched as to be mistaken for a guy. I also think that upon closer inspection (like seeing the diamond wedding band that I wear or the bracelet on my wrist) the guy might realize his mistake and feel more embarrassed. So I said to him, "Even though I know I look like a guy, I'm actually a woman."
I said this without any judgment or inflection--just stated it as matter-of-factly as I could. The checker (a college aged kid) was pretty chagrined--apologized--but I smiled and told him it was my short hair that fooled him. And he smiled, relieved, and agreed that the hair was what made him think I was a man.
Which of course has led me to think about my gender identity--or the way that I present myself as a woman.
Because previous to my cancer/chemo/surgery, I would have told you that I exhibit pretty masculine traits. That I liked wearing men's shirts (especially oversized white button down shirts); that I used to sing tenor parts in the chorus during high school because there weren't enough boys to sing those parts; that I have that annoying "male" way of interrupting people during conversations and other verbal markers that signal a more masculine rather than feminine talking style. And, in general, I just would have said that I don't *feel* very feminine.
To which I now say: RUBBISH.
I mean, you don't know what it's like not to feel feminine until you lose your hair and your breasts.
I also think it was easy for me to say that I felt masculine, because my female identity and my hetero identity were so firmly entrenched and seemingly one and the same. In other words, I wonder to what degree it's easy for me, as a straight-identified, pre-bilateral mastectomy and pre-chemotherapy-loss-of-hair woman, to say that I identify as "masculine" or feel myself to have "masculine" traits when so many of my obvious physical features read "feminine"--including my clothes and accessories: necklaces, rings, dresses, etc... Even more androgynous clothing like jeans or suit jackets were tailored for women rather than men--as well as my shoes--they clearly read female.
Yet ever since the loss of my hair and the loss of my breasts, I've been thinking about my gender identity, in terms of my physical features. I've been wondering about what parts of me are still coded as feminine and which parts of me may truly seem to be more androgynous, more masculine. When I look at myself from the neck down wearing a t-shirt for example, I encounter a flat chest that resembles a boy's more than a woman's. And when I look at myself in the mirror, with my hair cropped close to my head, I see an uncanny resemblance to my male cousins. In fact, when I had my head shaved by Matthew back in July, my mother remarked that I in the photos I posted on this blog I looked just like my Uncle Hunter.
All of which has made me realize that as much as I may look like a boy, I actually do feel like a girl (or woman rather). I actually identify, quite strongly, with being a woman--because my mannerisms, my clothing choices, my body language, my voice, are all coded as feminine and all convey a sense of my womanliness. My missing breasts didn't make me more of a woman, nor more feminine. My hair, well that's a different story. I do think that short hair plus androgynous clothing can equal gender confusion. Which may be why I'm not sure if I'll be keeping my hair short. That as much as I like to academically think about ambiguity, I'm not sure how I feel about being in an ambiguously gendered body.
And yet there's a part of me that thinks that perhaps this is a time for me to explore androgyny--to explore what it means to occupy a body that is feminine without such feminine markers as longer hair and breasts. To think about what it may mean for me to either intentionally pass as male or to allow myself to be mis-read--to not have corrected the check-out clerk but to just let him make his own assumptions about who I am.
Something to think about as I more through space in this new body of mine and a key question for me to wonder about is: what will I feel like wearing a summer dress? Will this be a moment when I feel the full weight of the loss of my breasts and the loss of a part of my femininity? I suppose we'll have to wait until May to find out.
Friday, January 14, 2011
Learning my limits
OK, here's a truth. I'm tired. I don't know if I'm more or less tired than I was during chemo and post-surgery. Probably less tired. At least physically it's easier for me to move around. But I *feel* fatigued. On many levels.
I think I've downplayed my exhaustion for a few reasons. Primarily I think that I have a hard time accepting that being tired and not having a lot of energy or energy in reserve, which I think is the more accurate description for my condition right now, is part of my new reality. And I think I've been reluctant to accept this because I have been concentrating on being BETTER--on healing and resuming my regular routine and a sense of normalcy.
But the truth is, I'm tired a lot. I just don't have the energy that I used to have. And what I mean by this is my life pre-chemo/surgery. My life pre-cancer diagnosis. And my fatigue and exhaustion aren't just physical--it's also mental and emotional. It's a new inability to handle stress in the same way. And a recognition that I need to be as gentle with myself as possible. To really cut myself slack. To not demand too much of myself.
In short, I need to learn my limits--my physical limits but also my mental/emotional limits.
And this is a hard thing for me to do. I'm normally a very high energy person. And I'm a multitasker who is a perfectionist and who burns the candles at both ends (and sometimes in the middle). I have extraordinarily high (overly high) expectations for myself (and for those close to me, unfortunate at times, I realize) and in general I feel like I should deliver on those expectations.
But I can't right now. Pushing myself, something I'm used to doing, is just not an option. I don't have it in me.
Case in point: after teaching back-to-back classes yesterday, I canceled my office hours and collapsed on the couch at home, pretty much not getting up until I collapsed in bed (where I promptly fell asleep the minute my head touched my pillow). Normally teaching back-to-back classes and holding office hours would leave me tired, but not "bone-dead-I'm-going-to-pass-out" tired.
This is my new reality. And it reminds me that teaching takes energy. Emotional and mental energy, in addition to physical energy. I think I forget this because I enjoy teaching and because I've been doing it for so long now that it almost seems like it is second nature to me. But it's work--it takes work to be a good teacher. And I'm not sure how organized or coherent or lively I was yesterday. I know I forgot to share some basic information with my students about their assignments--leading me to follow-up on email. I know that I felt scattered and a bit dis-organized during the first hour of teaching, perhaps a consequence of being out of the classroom for so long. And I know that I was surprised by all of this.
Which I shouldn't be. I shouldn't be surprised that teaching is going to be different for me this semester. That my body is different. I am different. And I should be gentle with myself. To not demand too much of myself, especially in these first few weeks back in the classroom.
And yet...I'm disappointed. Disappointed in my body for not having more energy. In myself for not being more organized and accomplishing more. Disappointed that I am still healing--that I'm not healed (past tense). It's silly, I know. Healing is something that can't be rushed. And I know that if I were someone else, I would tell me to be more patient and to be gentle and that what I went through was a big deal and I have to learn to limit myself and it's not a failing or an indictment on my character or sense of self.
Why do we often become our hardest critics? And is this just because I'm an academic who deconstructs and critiques others for a living?
(sigh)
Maybe I just need a mantra to get through the next few weeks and months. Be gentle Jen...be gentle Jen. Hopefully I can learn to take my own advice.
[Update/Aside: If you saw the post below, you'll see that Matthew and I adopted a new dog, Bella. Unfortunately, we had to return her to her foster mother last week Monday when we realized that Bella had some very aggressive tendencies. Specifically, she tried to attack Bruno 3 times and was also aggressive with our friend's dog, Squirrel. It was a hard decision, but at the end of the day, we feel we made the right choice because we couldn't live with the tension and with the uncertainty of her attacking Bruno. And it's also part of learning my own limits--it wasn't the right time to get another dog because teaching is just about all I can handle right now.]
I think I've downplayed my exhaustion for a few reasons. Primarily I think that I have a hard time accepting that being tired and not having a lot of energy or energy in reserve, which I think is the more accurate description for my condition right now, is part of my new reality. And I think I've been reluctant to accept this because I have been concentrating on being BETTER--on healing and resuming my regular routine and a sense of normalcy.
But the truth is, I'm tired a lot. I just don't have the energy that I used to have. And what I mean by this is my life pre-chemo/surgery. My life pre-cancer diagnosis. And my fatigue and exhaustion aren't just physical--it's also mental and emotional. It's a new inability to handle stress in the same way. And a recognition that I need to be as gentle with myself as possible. To really cut myself slack. To not demand too much of myself.
In short, I need to learn my limits--my physical limits but also my mental/emotional limits.
And this is a hard thing for me to do. I'm normally a very high energy person. And I'm a multitasker who is a perfectionist and who burns the candles at both ends (and sometimes in the middle). I have extraordinarily high (overly high) expectations for myself (and for those close to me, unfortunate at times, I realize) and in general I feel like I should deliver on those expectations.
But I can't right now. Pushing myself, something I'm used to doing, is just not an option. I don't have it in me.
Case in point: after teaching back-to-back classes yesterday, I canceled my office hours and collapsed on the couch at home, pretty much not getting up until I collapsed in bed (where I promptly fell asleep the minute my head touched my pillow). Normally teaching back-to-back classes and holding office hours would leave me tired, but not "bone-dead-I'm-going-to-pass-out" tired.
This is my new reality. And it reminds me that teaching takes energy. Emotional and mental energy, in addition to physical energy. I think I forget this because I enjoy teaching and because I've been doing it for so long now that it almost seems like it is second nature to me. But it's work--it takes work to be a good teacher. And I'm not sure how organized or coherent or lively I was yesterday. I know I forgot to share some basic information with my students about their assignments--leading me to follow-up on email. I know that I felt scattered and a bit dis-organized during the first hour of teaching, perhaps a consequence of being out of the classroom for so long. And I know that I was surprised by all of this.
Which I shouldn't be. I shouldn't be surprised that teaching is going to be different for me this semester. That my body is different. I am different. And I should be gentle with myself. To not demand too much of myself, especially in these first few weeks back in the classroom.
And yet...I'm disappointed. Disappointed in my body for not having more energy. In myself for not being more organized and accomplishing more. Disappointed that I am still healing--that I'm not healed (past tense). It's silly, I know. Healing is something that can't be rushed. And I know that if I were someone else, I would tell me to be more patient and to be gentle and that what I went through was a big deal and I have to learn to limit myself and it's not a failing or an indictment on my character or sense of self.
Why do we often become our hardest critics? And is this just because I'm an academic who deconstructs and critiques others for a living?
(sigh)
Maybe I just need a mantra to get through the next few weeks and months. Be gentle Jen...be gentle Jen. Hopefully I can learn to take my own advice.
[Update/Aside: If you saw the post below, you'll see that Matthew and I adopted a new dog, Bella. Unfortunately, we had to return her to her foster mother last week Monday when we realized that Bella had some very aggressive tendencies. Specifically, she tried to attack Bruno 3 times and was also aggressive with our friend's dog, Squirrel. It was a hard decision, but at the end of the day, we feel we made the right choice because we couldn't live with the tension and with the uncertainty of her attacking Bruno. And it's also part of learning my own limits--it wasn't the right time to get another dog because teaching is just about all I can handle right now.]
Sunday, January 2, 2011
Looking back and looking forward
It's now the second day of the new year, 2011, and I typically don't do new year's resolutions (seems like a set up for failed expectations) but leaving behind one year for the next does seem to be a chance to look back and reflect, as well as to look ahead with hopes and aspirations.
I know I haven't been writing much on this blog--truth be told, the last entry about why I chose not to do reconstruction seemed to be a place for me to pause in terms of my processing about cancer and chemo and surgery. Maybe I also needed a break from writing--which is funny since one could argue that all I've had since May 2010 is a break from writing and working (aside from blog writing that is, well, and some light editing and conference planning activity that I've been doing for the Association for Asian American Studies).
When I think about 2010, the last year of the first decade of the 21st century, I realize that it will be marked by my illness and cancer--that I will have spent more days of that year living with the knowledge that I have/had cancer than days not knowing--or to put it another way, that most of 2010 was occupied with being in and out of various doctor's offices (or more accurately, waiting rooms).
It'd be easy to say that 2010 was a horrible year and I'm glad it's over. But 2010 will also mark the year I turned 40, and most especially (and most significantly) the year I got married to Matthew. It will also mark the year I turned in my tenure file. And most recently, the year that Matthew and I expanded our family to include Bella--the newest addition to the Grady-Ho household:
[We've been debating about a second dog for a while now, but after we returned from our pre-Christmas vacation to Charleston--we decided to look in earnest and we found her through a rescue organization that takes dogs from rural shelters and fosters them in Wake Forest. So far Bruno is tolerating (just barely) his more energetic younger sister--we're hoping that in time, they'll really grow closer]
So there have been some important milestone and moments in 2010 that I'll look back on in fondness. And some of them, I must confess, have also been around my cancer diagnosis. Now, I still hold firm to the fact that if I had to do it over again, I would NEVER WANT TO HAVE CANCER OR GO THROUGH CHEMO AND SURGERY. But...I'd be lying if I didn't say that post-cancer diagnosis, I have been nearly overwhelmed and deeply moved by the love and kindness of people in my life. From near strangers to my oldest and closest family members, there have been random acts of kindness and love and support from people that have really humbled me. In particular, all the people who dropped off food--the food gifts were incredible and are most memorable, to me, as both a symbolic and material way for people to express their support/concern/affection.
Of course, there are moments that I will never want to relive. That awful feeling in the pit of my stomach upon hearing the initial diagnosis. The worry and concern, the anxiety and fear I could see on people's faces or hear in their voices when I shared my diagnosis. The entire experience of chemotherapy and surgery. The realization that I would more than likely lose ovarian function and be unable to get pregnant. The loss of my hair (which is, thankfully, growing back very quickly).
So 2010 was an awful year, health wise (and I should add, not just for myself but for my dear Aunt Teri-Ann and dear friend Jeff Cross--and there are other friends who have had health issues this year and who have had their own surgeries and experiences in doctors' waiting rooms & offices). Which means that in looking forward, what I most hope for 2011 is good health. For myself, for all my loved ones, for all of you.
What 2011 will actually bring is anyone's guess. I will be back in the classroom on January 11--which makes it the first time in a year that I'll be teaching undergrads (I only taught a single grad seminar Spring 2010, so this is one of the longest absences I've had from teaching undergrads). I'm still working on my book manuscript on racial ambiguity (I have 40 very rough pages on Tiger Woods that I'm not proud of ... yet, and I need to work on a chapter about transracial/transnational adoptees). I'm the conference co-chair for the annual meeting of the Association for Asian American Studies (yep, I've been doing conference stuff for the last few months while recuperating from surgery). And then there's my tenure file...I still need to be observed in the classroom--and then my department will vote on me (in late February I believe) and then I await news from the college and provost committees (keep your fingers crossed ladies and gentlemen). I've got a lot on my plate professionally.
Am I better? Yes. By which I mean, I've got my hair back (yay!), I'm no longer feeling so fatigued (although I still have bouts of exhaustion and my energy level is still not 100%--after walking Bella for 40 minutes the other day I came home and collapsed. Walking for 40 minutes should NOT drain me normally...I'm not sure how I'm going to train for this 4 mile race in April if this persists). I still have some tightness in my arms and chest post-surgery, but in general I have full range of motion. And most of all, psychologically and emotionally I feel strong.
But I want to clarify one thing about that last statement. While I do feel like my cancer is in the past--part of the memories of 2010 I will carry with me, I don't feel like I'm necessarily "over" it--I don't necessarily know if I'll ever feel the way I did pre-April 2010, mentally and emotionally that is (well, even physically since there's no way to get my original breasts back or to take away these physical scars). I have been marked by this disease, for better or worse, and I will carry those psychic scars with me, just as I wear the physical scars. They are part of my life now, and I am learning to live with them.
I'm not sure how much blogging I'll be doing in this space. I suspect that I'll still write posts from time to time. There is one about my gender identity, in particular, that I'd like to explore. But for those of you who were mostly checking in to see how I was doing, you probably won't be hearing much on the health front--you hopefully won't be hearing anything significant on the cancer or N.E.D. front EVER (that'd be wonderful, wouldn't it?). So this may be the last entry you decide to read, which is fine by me. I am grateful that people wanted to know what was going on with me and checked into the blog at all.
So Happy New Year! Lets hope that 2011 is good to us all, body and soul.
[Me & Bruno at Folly's Beach, SC -- see, my hair IS growing back!]
I know I haven't been writing much on this blog--truth be told, the last entry about why I chose not to do reconstruction seemed to be a place for me to pause in terms of my processing about cancer and chemo and surgery. Maybe I also needed a break from writing--which is funny since one could argue that all I've had since May 2010 is a break from writing and working (aside from blog writing that is, well, and some light editing and conference planning activity that I've been doing for the Association for Asian American Studies).
When I think about 2010, the last year of the first decade of the 21st century, I realize that it will be marked by my illness and cancer--that I will have spent more days of that year living with the knowledge that I have/had cancer than days not knowing--or to put it another way, that most of 2010 was occupied with being in and out of various doctor's offices (or more accurately, waiting rooms).
It'd be easy to say that 2010 was a horrible year and I'm glad it's over. But 2010 will also mark the year I turned 40, and most especially (and most significantly) the year I got married to Matthew. It will also mark the year I turned in my tenure file. And most recently, the year that Matthew and I expanded our family to include Bella--the newest addition to the Grady-Ho household:
[We've been debating about a second dog for a while now, but after we returned from our pre-Christmas vacation to Charleston--we decided to look in earnest and we found her through a rescue organization that takes dogs from rural shelters and fosters them in Wake Forest. So far Bruno is tolerating (just barely) his more energetic younger sister--we're hoping that in time, they'll really grow closer]
So there have been some important milestone and moments in 2010 that I'll look back on in fondness. And some of them, I must confess, have also been around my cancer diagnosis. Now, I still hold firm to the fact that if I had to do it over again, I would NEVER WANT TO HAVE CANCER OR GO THROUGH CHEMO AND SURGERY. But...I'd be lying if I didn't say that post-cancer diagnosis, I have been nearly overwhelmed and deeply moved by the love and kindness of people in my life. From near strangers to my oldest and closest family members, there have been random acts of kindness and love and support from people that have really humbled me. In particular, all the people who dropped off food--the food gifts were incredible and are most memorable, to me, as both a symbolic and material way for people to express their support/concern/affection.
Of course, there are moments that I will never want to relive. That awful feeling in the pit of my stomach upon hearing the initial diagnosis. The worry and concern, the anxiety and fear I could see on people's faces or hear in their voices when I shared my diagnosis. The entire experience of chemotherapy and surgery. The realization that I would more than likely lose ovarian function and be unable to get pregnant. The loss of my hair (which is, thankfully, growing back very quickly).
So 2010 was an awful year, health wise (and I should add, not just for myself but for my dear Aunt Teri-Ann and dear friend Jeff Cross--and there are other friends who have had health issues this year and who have had their own surgeries and experiences in doctors' waiting rooms & offices). Which means that in looking forward, what I most hope for 2011 is good health. For myself, for all my loved ones, for all of you.
What 2011 will actually bring is anyone's guess. I will be back in the classroom on January 11--which makes it the first time in a year that I'll be teaching undergrads (I only taught a single grad seminar Spring 2010, so this is one of the longest absences I've had from teaching undergrads). I'm still working on my book manuscript on racial ambiguity (I have 40 very rough pages on Tiger Woods that I'm not proud of ... yet, and I need to work on a chapter about transracial/transnational adoptees). I'm the conference co-chair for the annual meeting of the Association for Asian American Studies (yep, I've been doing conference stuff for the last few months while recuperating from surgery). And then there's my tenure file...I still need to be observed in the classroom--and then my department will vote on me (in late February I believe) and then I await news from the college and provost committees (keep your fingers crossed ladies and gentlemen). I've got a lot on my plate professionally.
Am I better? Yes. By which I mean, I've got my hair back (yay!), I'm no longer feeling so fatigued (although I still have bouts of exhaustion and my energy level is still not 100%--after walking Bella for 40 minutes the other day I came home and collapsed. Walking for 40 minutes should NOT drain me normally...I'm not sure how I'm going to train for this 4 mile race in April if this persists). I still have some tightness in my arms and chest post-surgery, but in general I have full range of motion. And most of all, psychologically and emotionally I feel strong.
But I want to clarify one thing about that last statement. While I do feel like my cancer is in the past--part of the memories of 2010 I will carry with me, I don't feel like I'm necessarily "over" it--I don't necessarily know if I'll ever feel the way I did pre-April 2010, mentally and emotionally that is (well, even physically since there's no way to get my original breasts back or to take away these physical scars). I have been marked by this disease, for better or worse, and I will carry those psychic scars with me, just as I wear the physical scars. They are part of my life now, and I am learning to live with them.
I'm not sure how much blogging I'll be doing in this space. I suspect that I'll still write posts from time to time. There is one about my gender identity, in particular, that I'd like to explore. But for those of you who were mostly checking in to see how I was doing, you probably won't be hearing much on the health front--you hopefully won't be hearing anything significant on the cancer or N.E.D. front EVER (that'd be wonderful, wouldn't it?). So this may be the last entry you decide to read, which is fine by me. I am grateful that people wanted to know what was going on with me and checked into the blog at all.
So Happy New Year! Lets hope that 2011 is good to us all, body and soul.
[Me & Bruno at Folly's Beach, SC -- see, my hair IS growing back!]
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