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
Sunday, September 18, 2011
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.
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