Three years ago today I was diagnosed with breast cancer. I remember being slightly nervous/anxious all morning and the early afternoon. And I remember chiding myself for feeling so anxious--that the results would be negative and I'd feel silly, later, for spending so much time fretting about nothing.
Except that I was wrong. It wasn't nothing--it was stage 2 breast cancer in my left breast and DCIS in my right.
April 15 is tax day, but it's always going to be "the day I found out I had cancer." How could it not?
But this morning I also learned that a childhood friend, Tina, passed away yesterday. She had also had breast cancer--diagnosed much earlier than mine. I can't recall the specifics of her own diagnosis--we were friends from music camp when we were teenagers, had drifted apart, but had briefly come together from time to time when our paths crossed--when I came back to California while living in Boston (where Tina was doing a PhD in French literature at UC Berkeley and I was doing my own PhD at Boston University) and then when I was visiting Paris, where she had relocated with her husband. When she found out about my diagnosis through a mutual friend, she sent me a really lovely message--supportive and generous and funny, which sums up many of the wonderful qualities of Tina. She was also driven, smart, and beautiful.
The most lasting memory I'll have of Tina is sipping a kir royale in the Latin Quarter of Paris while listening to a jazz quartet. It sounds like a cliche--one of those Parisian moments that happens in movies. And walking, afterwards, along the Seine with Tina and her husband Renaud, I felt like I was in a movie--that it was a perfect night because of where I was and who I was with. The last time I saw Tina was when she hugged me good-bye at the entrance to the metro by Notre Dame--I have a picture of the two of us, at night, with Notre Dame lit up in the background.
I feel sad. And, I suppose there's also the odd coincidence of learning about her death today. When I found out, last week, that she had come back to SF to seek treatment and that she was, essentially, dying, I felt freaked out--and knew it was a matter of days. But it doesn't really make a difference knowing that someone is going to be passing soon. I suppose it might take some of the blunt shock away, and maybe it helps people prepare themselves. But it still feels shocking. Even knowing that it is going to happen--that it's inevitable--it still surprised me.
There's a built in mechanism that many of us have--a denial mechanism that says we're going to live forever. Sure we'll get older and maybe we'll have injuries or illnesses, but modern medicine is a wonderful thing and you hear stories all the time about the 90 year old who ran a marathon, the 80 year old who climbed Everest, the 94 year old who went back to college and finally got that degree. And you think you'll just keep living your life until...
My cancer diagnosis was like having that mechanism disabled. It was a reminder that people do die. I will die. You will die. The people we love will die. It's a mortality wake up call.
And in the three years since that diagnosis, I've been able to get that mechanism to work again--I've been able, from time to time, to think that maybe I really will live forever--maybe I'll finally decide to go sky diving when I'm in my 70s. Maybe I'll have a second career as a French chef when I'm in my 80s. I've been able to think that maybe my cancer really is gone--that as the clock ticks up to my 5 year mark, maybe I'll really be able to say I'm cured.
But maybe not. Maybe the mechanism, that denial mechanism, is actually permanently broken in me, like a non-digital clock that tells time correctly only twice a day--maybe that's what it's like for me and the rest of the time I know. I know I'm going to die. I just don't know when or how. That's probably one of the scars I have that won't go away. Because I wonder. When I have a weird pain in my abdomen, I wonder if a tumor is growing in my uterus or ovaries. Because when I find myself more tired than usual, I wonder if it's just being middle-aged or if it's a sign that the cancer has come back. Because when I learn that another person has died of breast cancer like my friend Tina, it's a reminder that people still die from this disease.
RIP Tina. I'm glad you aren't in pain anymore. I'm sorry for everyone you left behind who will have a Tina sized hole in their hearts. I'm grateful to have known you and to have my last memory of you be a picture perfect Parisian memory that is happy. Thank you.
Monday, April 15, 2013
Thursday, March 14, 2013
An Update on Herstories: Breast Cancer Narratives and CounterNarratives
So I meant to write about attending the Herstories: Breast Cancer Narratives and CounterNarratives symposium right after I got back on March 2 because it was such a wonderful event and it was eye opening for me in many ways.
The first thing I have to say is that I didn't realize how much I wanted to be with other women who had experienced breast cancer. When I was first diagnosed and then going through chemotherapy, many people offered to put me in touch with women who had had breast cancer and friends and relatives (especially those who had gone through their own bouts of cancer) had talked about how important community is and the friends you develop in the chemo chair.
But I didn't want that. Not then.
When I was in the thick of things, when I was going through chemo and then preparing for surgery and then recovering from surgery, I didn't want to know other women who had gone through breast cancer or who were going through similar things. I know that might sound perverse--it felt perverse at the time. I tried going to yoga at Cornucopia Place and got totally freaked out the one time I went because it was filled with these women who had gone through cancer (mostly breast cancer) and they were laughing and joking and talking about their experiences (and most were post-chemo/surgery -- I think one woman was re-starting chemo but we seemed to be the only 2 women in active treatment) and it really freaked me out. I'm not exactly sure why--maybe because I didn't identify as someone who was NED (no evidence of disease) as many of these women did. Maybe because I was in the thick of things. Maybe because I was angry.
So fast forward to March 1 & 2. I'm at Wake Forest University listening to some pretty incredible people talk about their experiences with breast cancer--either from the perspective of being doctors/caregivers or family members of someone with breast cancer or with being women who had the disease. And it was over lunch as I was sitting at a table with two women, both academics, both survivors, that I realized how glad I was to be sitting with them and talking with them about our shared experiences. We exchanged stories about the weird and stupid and odd things that got said to us when we were diagnosed with breast cancer (one woman shared that a friend told her that she didn't seem like the kind of person who got breast cancer, to which she said, "What's the profile of a breast cancer patient?"--we both totally cracked up at her story--and maybe it's not THAT funny, but at the time it seemed hysterically funny.
And it reminded me about the easy camaraderie of the women in the yoga group. I asked one of my tablemates about whether she ever stopped thinking about recurrence now that she was at the 5 year mark (she just had her 5 year check up last month) and she said that it does lessen--that especially that 5 year mark seems significant in terms of turning a mental corner. It was comforting talking with her and with my other tablemate who had finished treatment and was embarking on breast reconstruction. Our experiences were different yet similar--and perhaps one similarity was the desire that all 3 of us had to try to narrate our stories--to try to talk about and write about what we had gone through.
That was a large point, perhaps the main point, about this conference--trying to listen to the stories of women going through a breast cancer diagnosis. Trying to hear what women with cancer have to say about the disease and their treatment and their relationships with family and friends, but also to hear about the ways that the disease isn't the only thing that is defining them. People talked about the importance of humor. About empowering women in their decisions and in telling their stories. People talked about resisting the corporatization of breast cancer in its pink ribbon incarnation. People reminded health care professionals (oncologists, surgeons, nurses, radiologists) about the importance of listening, really listening, to what women have to say. And one woman gave this amazing 20 minute power point presentation about the history of breast cancer from the time of the ancients to our present day culture.
I am not doing justice to how much I learned and took away from this experience. I not only got to listen and learn, I got to meet and have 1:1 conversations with these panelists (because it was a fairly small conference, about 50-80 on average attended each session). You can click here to see the full conference schedule and I'd definitely recommend trying to google folks whose talks seem interesting. Just to highlight a few, Amy Boesky (Boston College) has a memoir about her family and being positive for the BRCA mutation (she was also recently on NPR where she outed herself as one of the writers of the Sweet Valley High series!). I met Ana Iltis who is editing a journal, Narrative Inquiry in Bioethics, that strives to tell the stories of people who are typically not enfranchised to have their voices heard, and she told this remarkable (and anger producing) story about her husband's aunt who was not treated with respect by the medical establishment. I talked with Kathryn Montgomery, a leading researcher in the field of medical humanities, who shared stories about her daughter's breast cancer (and its recurrence), and I was inspired by Hephzibah Roskelly, a fellow English professor down the road at UNC Greensboro who has talked theorized about her experiences with breast cancer in a way that is so smart and accessible and powerful.
All of which left me, at the end of this 2 day event, feeling like I might be ready to try to construct my own narrative about breast cancer.
The first thing I have to say is that I didn't realize how much I wanted to be with other women who had experienced breast cancer. When I was first diagnosed and then going through chemotherapy, many people offered to put me in touch with women who had had breast cancer and friends and relatives (especially those who had gone through their own bouts of cancer) had talked about how important community is and the friends you develop in the chemo chair.
But I didn't want that. Not then.
When I was in the thick of things, when I was going through chemo and then preparing for surgery and then recovering from surgery, I didn't want to know other women who had gone through breast cancer or who were going through similar things. I know that might sound perverse--it felt perverse at the time. I tried going to yoga at Cornucopia Place and got totally freaked out the one time I went because it was filled with these women who had gone through cancer (mostly breast cancer) and they were laughing and joking and talking about their experiences (and most were post-chemo/surgery -- I think one woman was re-starting chemo but we seemed to be the only 2 women in active treatment) and it really freaked me out. I'm not exactly sure why--maybe because I didn't identify as someone who was NED (no evidence of disease) as many of these women did. Maybe because I was in the thick of things. Maybe because I was angry.
So fast forward to March 1 & 2. I'm at Wake Forest University listening to some pretty incredible people talk about their experiences with breast cancer--either from the perspective of being doctors/caregivers or family members of someone with breast cancer or with being women who had the disease. And it was over lunch as I was sitting at a table with two women, both academics, both survivors, that I realized how glad I was to be sitting with them and talking with them about our shared experiences. We exchanged stories about the weird and stupid and odd things that got said to us when we were diagnosed with breast cancer (one woman shared that a friend told her that she didn't seem like the kind of person who got breast cancer, to which she said, "What's the profile of a breast cancer patient?"--we both totally cracked up at her story--and maybe it's not THAT funny, but at the time it seemed hysterically funny.
And it reminded me about the easy camaraderie of the women in the yoga group. I asked one of my tablemates about whether she ever stopped thinking about recurrence now that she was at the 5 year mark (she just had her 5 year check up last month) and she said that it does lessen--that especially that 5 year mark seems significant in terms of turning a mental corner. It was comforting talking with her and with my other tablemate who had finished treatment and was embarking on breast reconstruction. Our experiences were different yet similar--and perhaps one similarity was the desire that all 3 of us had to try to narrate our stories--to try to talk about and write about what we had gone through.
That was a large point, perhaps the main point, about this conference--trying to listen to the stories of women going through a breast cancer diagnosis. Trying to hear what women with cancer have to say about the disease and their treatment and their relationships with family and friends, but also to hear about the ways that the disease isn't the only thing that is defining them. People talked about the importance of humor. About empowering women in their decisions and in telling their stories. People talked about resisting the corporatization of breast cancer in its pink ribbon incarnation. People reminded health care professionals (oncologists, surgeons, nurses, radiologists) about the importance of listening, really listening, to what women have to say. And one woman gave this amazing 20 minute power point presentation about the history of breast cancer from the time of the ancients to our present day culture.
I am not doing justice to how much I learned and took away from this experience. I not only got to listen and learn, I got to meet and have 1:1 conversations with these panelists (because it was a fairly small conference, about 50-80 on average attended each session). You can click here to see the full conference schedule and I'd definitely recommend trying to google folks whose talks seem interesting. Just to highlight a few, Amy Boesky (Boston College) has a memoir about her family and being positive for the BRCA mutation (she was also recently on NPR where she outed herself as one of the writers of the Sweet Valley High series!). I met Ana Iltis who is editing a journal, Narrative Inquiry in Bioethics, that strives to tell the stories of people who are typically not enfranchised to have their voices heard, and she told this remarkable (and anger producing) story about her husband's aunt who was not treated with respect by the medical establishment. I talked with Kathryn Montgomery, a leading researcher in the field of medical humanities, who shared stories about her daughter's breast cancer (and its recurrence), and I was inspired by Hephzibah Roskelly, a fellow English professor down the road at UNC Greensboro who has talked theorized about her experiences with breast cancer in a way that is so smart and accessible and powerful.
All of which left me, at the end of this 2 day event, feeling like I might be ready to try to construct my own narrative about breast cancer.
Thursday, February 28, 2013
HerStories: Breast Cancer Narratives & CounterNarratives
I should really have posted this a week ago -- I sometimes forget that I have this blog (awful, I know) and then I remember and I think about all the things I want to be writing in this space, could be writing in this space and SHOULD be writing in this space.
Like this upcoming symposium at Wake Forest University in Winston-Salem, NC. Because this is such short notice, only folks who live in the greater NC area will probably be able to come (unless, of course, you were aware of this symposium much earlier). I'll be giving a full report because I'm going both Friday & Saturday. But for any of you who do live driving distance to Winston-Salem, please consider checking out at least Saturday's offerings--you can find the program of events on the Wake Forest Humanities Institute Page (click here).
The conference is free and is devoted to examining breast cancer narratives and counter narratives--like critiquing pink ribbon culture. So OF COURSE I had to go--I mean, look at the keynote speaker and what she's going to talk about:
KEYNOTE ADDRESS: “The Self-Telling Body—Who Tells Whom in Breast Cancer Narratives?”
Rita Charon, Professor of Clinical Medicine and Executive Director of the Program in Narrative Medicine, Columbia University
[That's for Friday night at 6pm]
And then, of course, there's this description for the last panel on Saturday:
2:30 p.m. – 4:00 p.m.
PANEL: THEORIZING BREAST CANCER NARRATIVES
This panel will offer literary, philosophical, and cultural approaches to analyzing breast cancer narratives in the twenty-first century. Topics will include the expansion of visual representations, links between genetic narratives and feminist theories of the body, concepts of the posthuman, analysis of pink ribbon culture, and pragmatist and bioethical inquiry into the lived experience of this disease.
But whether you're able to come at the last minute or not, I promise to write up my experiences of attending when I'm back on Sunday.
Like this upcoming symposium at Wake Forest University in Winston-Salem, NC. Because this is such short notice, only folks who live in the greater NC area will probably be able to come (unless, of course, you were aware of this symposium much earlier). I'll be giving a full report because I'm going both Friday & Saturday. But for any of you who do live driving distance to Winston-Salem, please consider checking out at least Saturday's offerings--you can find the program of events on the Wake Forest Humanities Institute Page (click here).
The conference is free and is devoted to examining breast cancer narratives and counter narratives--like critiquing pink ribbon culture. So OF COURSE I had to go--I mean, look at the keynote speaker and what she's going to talk about:
KEYNOTE ADDRESS: “The Self-Telling Body—Who Tells Whom in Breast Cancer Narratives?”
Rita Charon, Professor of Clinical Medicine and Executive Director of the Program in Narrative Medicine, Columbia University
[That's for Friday night at 6pm]
And then, of course, there's this description for the last panel on Saturday:
2:30 p.m. – 4:00 p.m.
PANEL: THEORIZING BREAST CANCER NARRATIVES
This panel will offer literary, philosophical, and cultural approaches to analyzing breast cancer narratives in the twenty-first century. Topics will include the expansion of visual representations, links between genetic narratives and feminist theories of the body, concepts of the posthuman, analysis of pink ribbon culture, and pragmatist and bioethical inquiry into the lived experience of this disease.
But whether you're able to come at the last minute or not, I promise to write up my experiences of attending when I'm back on Sunday.
Tuesday, January 1, 2013
Happy New Year -- Looking ahead, looking back
So this seems about par for the course--a new blog post every 3-4 months. Of course I had often thought about writing and posting in this space. I'm never sure if there's anyone still reading this blog, but I thought that it's still useful to have it up for the older posts, the ones that are happening in "real time" in terms of my initial breast cancer diagnosis, treatment decisions, chemo, surgery, and recovery. If you want to read any of those posts, you can look on the right and see the key blog posts I've highlighted that gives you a sense of my story so far.
But this is a new year. Specifically, it's the first day of 2013. The doomsday folks who misread the Mayan calendar were wrong--life didn't end on 12/12/12. We also managed to avoid going over a fiscal cliff (well, perhaps--the House still has to approve the deal). We are all still alive.
Although I suppose this is a point where I could wax on in philosophical fashion about how much longer I or anyone else has on this planet. For better or worse, what my cancer diagnosis and everything that followed from it has meant is that I'm more aware of my mortality--more aware that I am alive, for now, but whether it will be the recurrence of my cancer, a new cancer (tamoxifen makes me at risk for uterine cancer, and the chemo made me at risk for ovarian cancer) or just the vagaries of life (random acts of violence, accidents, illnesses--wow, this is turning into a rather somber new year's blog post).
Yet that's not what I want to write about, not today.
What I want to write about, the "looking back" part, is a post I've said I was going to write for over two years:
What it's like not to have breasts.
[Aside: for anyone new to this blog, I had bi-lateral (double) mastectomy surgery in mid-October, 2010 without reconstructive surgery. For more on my reasons not to do reconstruction, click here for this older blog post]
I must say that the answer I would have given you in January 2011 would be different than January 2012 and now, January 2013.
In the weeks and months after my bi-lateral mastectomy surgery, I was very low. Perhaps not a full throttled depression, but there were so many things to juggle, mentally and emotionally, related to my breast cancer and related to my life in general. The first time I took a shower after I was out of the hospital, I just sobbed. I cried every time I took a shower and had to change and saw the bandages, the drains, the empty space where my breasts had been. And the first time that Matthew and I had sex, I sobbed, and he just held me and told me it was going to be OK.
That's been the hardest part. Perhaps that's an overly intimate thing to share, but it's true--it's what I had suspected all along when I was trying to decide whether to do the mastectomy surgery or just the lumpectomy with follow-up radiation. I knew that losing my breasts meant losing sexual pleasure. And while I could have had replacement breasts that would "look" like my old breasts (or newer, better breasts), the sexual stimulation and pleasure would be gone (you can't have nipple stimulation with a fake nipple and silicon breasts).
And there's the clothing issue. I gave away several dresses and blouses that really didn't fit anymore--that didn't look good without my breasts--or because I was too self conscious with the low cleavage showing my scar tissue. So shopping has been a new challenge. Never a fan of the cowl neck line previously, I now have 3 different cowl neck sweaters/dresses because for some reason this look works for breastless women.
It's been over 2 years since my surgery. The scars have healed (although I still don't have much sensation in my chest area or underneath my arms--apparently when they remove your lymph nodes and your breasts and cut through these nerves, they can take a long time to wake up, if they ever do--my surgeon says not to worry about it, so I don't). And I've healed. I don't walk around thinking about myself as someone with breast cancer. Then again, I never forget it. Like with any non-visible but potent identity, it's something I'm always aware of but don't think about all the time.
So the word I would use, now, to talk about not having breasts?
Normal.
This is my new normal. And not having breasts feels normal to me.
I can name a few milestones. The first time I changed in a woman's locker room at a spa. I was extraordinarily self conscious--this was pretty early on, February 2011. I wanted to treat myself to a few spa treatments because my skin was wrecked after chemo (chapped, dry, dehydrated) and because I wanted to treat myself after going through that whole experience. I was the only person in the locker room, but I worried that there might be other women who would come in and see me...and then what? I don't know whether I was afraid that they'd be embarrassed or I'd be embarrassed or both. And what would we be embarrassed about? My deformity (because that's what it felt like then). My visible mark of having breast cancer? I changed quickly and was grateful that no one came in. I considered this a minor triumph that I didn't use the privacy booth but was able to just change in public, even if I felt anxious about it.
The next milestone also came at a spa, this time in San Francisco this past May 2010. I was going to a Japanese bath house with my old college roommates. I'd been naked around them many, many times--including post-surgery (we all rented a house and went skinny dipping in the hot tub). But this would be the first time I would be naked not just with them but in a public space with other women--women I didn't know. You can wear a bathing suit, but of the thirty to forty women I encountered at the spa, I'd say only about three women opted to wear a bathing suit. Everyone else (as I figured they would) were naked. I had brought along my bathing suit and just assumed that I'd be one of the few women going clothed, but when we were in the locker room and I started getting out of my street clothes, I just simply put on my robe without the suit and walked out with the rest of my friends. And while I was initially self conscious, I quickly forgot about my breastless difference from the other breasted women and just enjoyed being in so much water and steam and with my very dear and close friends. It might have also helped that without my glasses, I'm blind as a bat so I couldn't see if anyone had a weird reaction to seeing me and my missing breasts.
The last milestone just happened in November. I was attending a conference in San Juan Puerto Rico (The American Studies Association--yes, it does sound like a boondoggle, but I was actually on two panels). A group of friends rented a set of condos a block from the beach, so we were constantly going back and forth between the conference site and the beach. The friend I was sharing a room with is someone I've known for nearly a decade, but we had never really lived together like roommates before. Nevertheless, we're very comfortable with each other and early on I asked if she minded if I just walked naked from my room to the bathroom (easier than doing the towel thing--and I suppose I'm outing myself, but I do walk around naked in my house -- with the windows shut of course -- if it's just easier going from one room to another). Anyway, it wasn't until after I returned home that I realized this was the first time I had been naked around someone new when I didn't ask them if they were uncomfortable seeing me without breasts--where I didn't think of my body as different from my friends' bodies or needing to be explained or accounted for in any way as different from them.
In other words, I had normalized my breast-less state. I forgot about my breast-less difference. I was living my life and thinking of myself as Jennifer rather than Jennifer without breasts.
So there you have it. I'm sure there are going to be more moments in the future where I feel self conscious or where I second guess myself on being in a locker room. The above three milestones all occurred in very private spaces or with very close friends. But what has surprised me is how quickly I've adjusted and how I'm not sad about missing my breasts anymore. I am not glad not to have breasts, but among the things I love is not wearing a bra while jogging, not wearing a bra period....OK, so that's it. Not wearing a bra. Still, the list of things I'm sad about (sexual pleasure) is manageable (we can derive sexual pleasure in so many different ways--and honestly we are such a breast fixated nation, in some ways this is just an exercise in healthy diversity of sexual practices).
This is my new normal and it feel comfortable to me.
But this is a new year. Specifically, it's the first day of 2013. The doomsday folks who misread the Mayan calendar were wrong--life didn't end on 12/12/12. We also managed to avoid going over a fiscal cliff (well, perhaps--the House still has to approve the deal). We are all still alive.
Although I suppose this is a point where I could wax on in philosophical fashion about how much longer I or anyone else has on this planet. For better or worse, what my cancer diagnosis and everything that followed from it has meant is that I'm more aware of my mortality--more aware that I am alive, for now, but whether it will be the recurrence of my cancer, a new cancer (tamoxifen makes me at risk for uterine cancer, and the chemo made me at risk for ovarian cancer) or just the vagaries of life (random acts of violence, accidents, illnesses--wow, this is turning into a rather somber new year's blog post).
Yet that's not what I want to write about, not today.
What I want to write about, the "looking back" part, is a post I've said I was going to write for over two years:
What it's like not to have breasts.
[Aside: for anyone new to this blog, I had bi-lateral (double) mastectomy surgery in mid-October, 2010 without reconstructive surgery. For more on my reasons not to do reconstruction, click here for this older blog post]
I must say that the answer I would have given you in January 2011 would be different than January 2012 and now, January 2013.
In the weeks and months after my bi-lateral mastectomy surgery, I was very low. Perhaps not a full throttled depression, but there were so many things to juggle, mentally and emotionally, related to my breast cancer and related to my life in general. The first time I took a shower after I was out of the hospital, I just sobbed. I cried every time I took a shower and had to change and saw the bandages, the drains, the empty space where my breasts had been. And the first time that Matthew and I had sex, I sobbed, and he just held me and told me it was going to be OK.
That's been the hardest part. Perhaps that's an overly intimate thing to share, but it's true--it's what I had suspected all along when I was trying to decide whether to do the mastectomy surgery or just the lumpectomy with follow-up radiation. I knew that losing my breasts meant losing sexual pleasure. And while I could have had replacement breasts that would "look" like my old breasts (or newer, better breasts), the sexual stimulation and pleasure would be gone (you can't have nipple stimulation with a fake nipple and silicon breasts).
And there's the clothing issue. I gave away several dresses and blouses that really didn't fit anymore--that didn't look good without my breasts--or because I was too self conscious with the low cleavage showing my scar tissue. So shopping has been a new challenge. Never a fan of the cowl neck line previously, I now have 3 different cowl neck sweaters/dresses because for some reason this look works for breastless women.
It's been over 2 years since my surgery. The scars have healed (although I still don't have much sensation in my chest area or underneath my arms--apparently when they remove your lymph nodes and your breasts and cut through these nerves, they can take a long time to wake up, if they ever do--my surgeon says not to worry about it, so I don't). And I've healed. I don't walk around thinking about myself as someone with breast cancer. Then again, I never forget it. Like with any non-visible but potent identity, it's something I'm always aware of but don't think about all the time.
So the word I would use, now, to talk about not having breasts?
Normal.
This is my new normal. And not having breasts feels normal to me.
I can name a few milestones. The first time I changed in a woman's locker room at a spa. I was extraordinarily self conscious--this was pretty early on, February 2011. I wanted to treat myself to a few spa treatments because my skin was wrecked after chemo (chapped, dry, dehydrated) and because I wanted to treat myself after going through that whole experience. I was the only person in the locker room, but I worried that there might be other women who would come in and see me...and then what? I don't know whether I was afraid that they'd be embarrassed or I'd be embarrassed or both. And what would we be embarrassed about? My deformity (because that's what it felt like then). My visible mark of having breast cancer? I changed quickly and was grateful that no one came in. I considered this a minor triumph that I didn't use the privacy booth but was able to just change in public, even if I felt anxious about it.
The next milestone also came at a spa, this time in San Francisco this past May 2010. I was going to a Japanese bath house with my old college roommates. I'd been naked around them many, many times--including post-surgery (we all rented a house and went skinny dipping in the hot tub). But this would be the first time I would be naked not just with them but in a public space with other women--women I didn't know. You can wear a bathing suit, but of the thirty to forty women I encountered at the spa, I'd say only about three women opted to wear a bathing suit. Everyone else (as I figured they would) were naked. I had brought along my bathing suit and just assumed that I'd be one of the few women going clothed, but when we were in the locker room and I started getting out of my street clothes, I just simply put on my robe without the suit and walked out with the rest of my friends. And while I was initially self conscious, I quickly forgot about my breastless difference from the other breasted women and just enjoyed being in so much water and steam and with my very dear and close friends. It might have also helped that without my glasses, I'm blind as a bat so I couldn't see if anyone had a weird reaction to seeing me and my missing breasts.
The last milestone just happened in November. I was attending a conference in San Juan Puerto Rico (The American Studies Association--yes, it does sound like a boondoggle, but I was actually on two panels). A group of friends rented a set of condos a block from the beach, so we were constantly going back and forth between the conference site and the beach. The friend I was sharing a room with is someone I've known for nearly a decade, but we had never really lived together like roommates before. Nevertheless, we're very comfortable with each other and early on I asked if she minded if I just walked naked from my room to the bathroom (easier than doing the towel thing--and I suppose I'm outing myself, but I do walk around naked in my house -- with the windows shut of course -- if it's just easier going from one room to another). Anyway, it wasn't until after I returned home that I realized this was the first time I had been naked around someone new when I didn't ask them if they were uncomfortable seeing me without breasts--where I didn't think of my body as different from my friends' bodies or needing to be explained or accounted for in any way as different from them.
In other words, I had normalized my breast-less state. I forgot about my breast-less difference. I was living my life and thinking of myself as Jennifer rather than Jennifer without breasts.
So there you have it. I'm sure there are going to be more moments in the future where I feel self conscious or where I second guess myself on being in a locker room. The above three milestones all occurred in very private spaces or with very close friends. But what has surprised me is how quickly I've adjusted and how I'm not sad about missing my breasts anymore. I am not glad not to have breasts, but among the things I love is not wearing a bra while jogging, not wearing a bra period....OK, so that's it. Not wearing a bra. Still, the list of things I'm sad about (sexual pleasure) is manageable (we can derive sexual pleasure in so many different ways--and honestly we are such a breast fixated nation, in some ways this is just an exercise in healthy diversity of sexual practices).
This is my new normal and it feel comfortable to me.
Thursday, August 16, 2012
No bones about it--cancer is scary
Last week, on Thursday, August 9, 2012, renowned humorist and This American Life contributor, David Rakoff died. He died, essentially, because a tumor had developed in his left shoulder--a cancerous tumor that was brought about by the radiation treatment he underwent in his 20s when he was diagnosed with Hodgkins Lymphoma.
I was in the shower listening to NPR when they announced his death. And I cried.
I didn't know David Rakoff personally, but I did feel like I "knew" him through his writing (he's the author of 3 books and a 4th that will be published posthumously). I also knew him through his radio pieces for This American Life--most recently a bit he did playing Dr Seuss.
I admired his writing and his radio essays, but I cried because I was scared.
For me.
I had written previously about cancer making you selfish--or rather, making me selfish. I think this is sort've natural. I also don't want to paint myself into being a terrible monster. I am genuinely sad about Rakoff's passing. Just as I was genuinely sad when Elizabeth Edwards passed away a year and a half ago. Just as I was and still am genuinely sad over the death of my favorite aunt from leukemia.
But I am also scared. Not in a way where I am paralyzed or I think about my mortality constantly. But I definitely know that hearing about David Rakoff's cancer coming back a second time and then hearing the news about his death makes me feel scared. It makes me wonder if that's going to happen to me.
My fear doesn't last very long--enough to cry in the shower mourning David Rakoff and feeling anxious about my future. And then I dry myself off and go about my day.
But I wanted to write about fear because I think it's something we have a hard time acknowledging--those of us who have a cancer diagnosis or who have a loved one with a cancer diagnosis.
And recently I was reminded about the need we have to keep positive while reading this piece in the New York Times, part of their "Life, Interrupted" series which chronicles the thoughts and feeling of Suleika Jaouad.
Quoting Barbara Ehrenreich's critique of the bright-siding of cancer, Jaouad, after admitting that she has tried to keep a positive attitude towards everything she has been dealing with related to her cancer, writes:
So it's sad and scary to hear about people who did all these things, like David Rakoff, and who, none-the-less, dies from cancer related complications.
Not a cherry post, I know. But I think it's OK to admit that I'm scared. Just a little bit. I think it's important, in fact, to acknowledge that I went through something horribly difficult and life altering. And that the scars that I wear are not simply on my chest.
I was in the shower listening to NPR when they announced his death. And I cried.
I didn't know David Rakoff personally, but I did feel like I "knew" him through his writing (he's the author of 3 books and a 4th that will be published posthumously). I also knew him through his radio pieces for This American Life--most recently a bit he did playing Dr Seuss.
I admired his writing and his radio essays, but I cried because I was scared.
For me.
I had written previously about cancer making you selfish--or rather, making me selfish. I think this is sort've natural. I also don't want to paint myself into being a terrible monster. I am genuinely sad about Rakoff's passing. Just as I was genuinely sad when Elizabeth Edwards passed away a year and a half ago. Just as I was and still am genuinely sad over the death of my favorite aunt from leukemia.
But I am also scared. Not in a way where I am paralyzed or I think about my mortality constantly. But I definitely know that hearing about David Rakoff's cancer coming back a second time and then hearing the news about his death makes me feel scared. It makes me wonder if that's going to happen to me.
My fear doesn't last very long--enough to cry in the shower mourning David Rakoff and feeling anxious about my future. And then I dry myself off and go about my day.
But I wanted to write about fear because I think it's something we have a hard time acknowledging--those of us who have a cancer diagnosis or who have a loved one with a cancer diagnosis.
And recently I was reminded about the need we have to keep positive while reading this piece in the New York Times, part of their "Life, Interrupted" series which chronicles the thoughts and feeling of Suleika Jaouad.
Quoting Barbara Ehrenreich's critique of the bright-siding of cancer, Jaouad, after admitting that she has tried to keep a positive attitude towards everything she has been dealing with related to her cancer, writes:
At what point is positivity a form of denial? Does positivity at all costs have a cost? I’m not a negative person, and I’m certainly not trying to set up a school for negative thinking, but today I’m giving myself permission to step out of the spin zone of positivity — to stare down fear, anxiety and dread without the guilt that I might be giving up or not fighting hard enough.And reading her essay reminded me of what I had forgotten because I am no longer living with it on a daily basis: Cancer is hard. It's not about being positive or negative. It's about cancer being a difficult disease to navigate. And it's difficult on so many levels--because chemotherapy is horrible and the side effects can be crippling. But most of all, because it's scary. It's scary to think that you are putting your body through all of these treatments--of getting poked and prodded and having parts of yourself cut open and cut off. And we do this because we want to have the best outcome possible--we want the cancer to go away, and we want to live.
So it's sad and scary to hear about people who did all these things, like David Rakoff, and who, none-the-less, dies from cancer related complications.
Not a cherry post, I know. But I think it's OK to admit that I'm scared. Just a little bit. I think it's important, in fact, to acknowledge that I went through something horribly difficult and life altering. And that the scars that I wear are not simply on my chest.
Tuesday, August 7, 2012
Shannon Miller: Ovarian Cancer survivor
I was recently contacted by Heather of the Mesothelioma Cancer Alliance Blog to highlight an interview that they recently did with Olympic gymnast Shannon Miller.
Miller is the most decorated gymnast in Olympic history winning seven medals total (3 bronze, 2 silver and 2 gold). She is part of the 1996 Magnificent Seven team that won Olympic gold in the team competition (The Fab Five recently repeated that victory just last week).
What some people may not know is that Miller was diagnosed with ovarian cancer in early 2011.
She underwent chemotherapy treatment and has received an all clear of NED. You can read more about Miller in the interview with the Mesothelioma blog (click here).
Miller is the most decorated gymnast in Olympic history winning seven medals total (3 bronze, 2 silver and 2 gold). She is part of the 1996 Magnificent Seven team that won Olympic gold in the team competition (The Fab Five recently repeated that victory just last week).
What some people may not know is that Miller was diagnosed with ovarian cancer in early 2011.
She underwent chemotherapy treatment and has received an all clear of NED. You can read more about Miller in the interview with the Mesothelioma blog (click here).
Friday, July 6, 2012
It's been over 2 years since my first round of chemo...
It has been a LONG time since I've blogged on NFPR.
There have been times, off and on, when I've thought about logging in and sharing a story or insight or observation. There have been moments when I've wanted to write to process what I was going through. Or to record an amusing anecdote. Or to mark an anniversary: The 2nd year anniversary of my cancer diagnosis (which is also, unfortunately, the day after my husband's birthday--it will remain unforgettable for us on many levels). The 2nd year anniversary of my port being put in. The 2nd year anniversary of when I started chemo.
But, of course, I didn't.
Didn't write about these milestones. Didn't commemorate them. Didn't even note them, in some cases, until after the fact.
So why am I back now?
Not sure.
Maybe because in doing research for a chapter I'm writing on transracial/transnational adoptee blogs, I came across an essay by a theorist who works on narrative and new media, and she was writing about the gendered nature of cancer blogs. And in describing the various "story-genres" and purposes for which women wrote about their breast cancer (and all of the blogs she analyzed were breast cancer blogs--at least the ones written by women--she also looked at male bloggers who wrote about a variety of cancers that they were experiencing), I was reminded of my own blog--how useful and helpful it had been for me to have a place to talk about my experiences with cancer. To vent my rage and frustration and anxiety about going making treatment decisions, through chemotherapy, preparing for surgery, living without breasts, and thinking about my mortality.
Recently I learned that my ex-husband's stepmother (are you following that chain?) died a year ago from ovarian cancer. She had been a breast cancer survivor. Her ovarian cancer came nearly ten years after her breast cancer diagnosis and seems to have been a result of the chemotherapy and radiation treatment that she underwent. I'm, unfortunately, no longer in touch with my ex-husband or his father/family (I learned about her passing through a mutual friend), but I felt sad and freaked out, both for her/her family and for myself.
This is what having cancer does--it makes you selfish. It makes you think and wonder about whether it's going to happen to you. I mean, of course I was sorry about her passing. And it felt weird to learn about her death from someone other than my ex-husband--highlighting the estrangement from a family that I'd been married into for over a decade. But part of my sadness over her passing was also a sadness at wondering whether her fate could be my fate. Would this be my fate in another 8 years. Could I be developing cancer in my ovaries, in my uterus, as a result of the chemotherapy or just because--just because when you have cancer, there is a potential for it to spread to other parts of your body. And uterine and ovarian cancer is so difficult to detect because you can't see or feel the tumor.
A week ago I was having drinks with some friends, and someone brought up the fact that she sometimes forgot that I had had cancer. I know what she means--at least, I know why she could forget. I don't talk about it very often--I mean, it doesn't really come up in everyday conversation. And there are few visual reminders. I suppose the most prominent one is that I no longer have breasts, but since I was small to begin with and since I've learned to select clothes that don't enhance my bust (or missing bustline) it's easy to forget that there's a part of me that's missing, especially now that my hair has completely grown back in (and it has grown back thicker and darker than before, if you can believe that--I have less gray hair now than I did pre-cancer--not that I ever had a lot of white hair--I inherited my father's genes for that because he didn't go gray until he turned 50 and then "poof!" it was all overnight).
So I totally understand why my friend sometimes forgets that I have cancer, and why no one who didn't know me 2 years ago would even wonder about me and whether I'd had breast cancer because I just look like a normal, healthy woman in her early 40s (Matthew would say I look like I'm in my early 30s, but he may be looking at me with eyes of love).
But I don't ever forget. And I don't mean because there's ocular evidence everytime I shower and look down at my scars. I mean because I feel like being a person with cancer--having experienced chemotherapy and the various surgeries I had related to my cancer diagnosis--that's now all a part of who I am. I think about being a person with a cancer diagnosis (notice that I still don't feel comfortable calling myself a "survivor") in the same way that I think about myself as a woman or as an Asian American. These identities are part of who I am in such a naturalized, almost essentialized (I use that word, hesistantly, since I'm not trying to say that there is an essentialized element or quality to being a woman or being Asian, but perhaps I don't need to be so academically cautious in this space).
I've internalized having a cancer diagnosis and going through cancer treatment in the same way that I've internalized the fact that I have an Asian face. These are parts of me that just are and that are unforgettable to me.
Anyway, I think it might be time for me to start writing in this space again. I needed some distance from thinking about myself in relation to my cancer. But I might be ready to start exploring some things that I've been thinking about...like what the best thing is about not having breasts (I'll save that for a future post). So if anyone is still reading this blog from its initial startup 2 years ago, thanks for being a loyal reader. And for anyone new, I hope that this blog provides some interesting insights for you, and feel free to leave a comment.
There have been times, off and on, when I've thought about logging in and sharing a story or insight or observation. There have been moments when I've wanted to write to process what I was going through. Or to record an amusing anecdote. Or to mark an anniversary: The 2nd year anniversary of my cancer diagnosis (which is also, unfortunately, the day after my husband's birthday--it will remain unforgettable for us on many levels). The 2nd year anniversary of my port being put in. The 2nd year anniversary of when I started chemo.
But, of course, I didn't.
Didn't write about these milestones. Didn't commemorate them. Didn't even note them, in some cases, until after the fact.
So why am I back now?
Not sure.
Maybe because in doing research for a chapter I'm writing on transracial/transnational adoptee blogs, I came across an essay by a theorist who works on narrative and new media, and she was writing about the gendered nature of cancer blogs. And in describing the various "story-genres" and purposes for which women wrote about their breast cancer (and all of the blogs she analyzed were breast cancer blogs--at least the ones written by women--she also looked at male bloggers who wrote about a variety of cancers that they were experiencing), I was reminded of my own blog--how useful and helpful it had been for me to have a place to talk about my experiences with cancer. To vent my rage and frustration and anxiety about going making treatment decisions, through chemotherapy, preparing for surgery, living without breasts, and thinking about my mortality.
Recently I learned that my ex-husband's stepmother (are you following that chain?) died a year ago from ovarian cancer. She had been a breast cancer survivor. Her ovarian cancer came nearly ten years after her breast cancer diagnosis and seems to have been a result of the chemotherapy and radiation treatment that she underwent. I'm, unfortunately, no longer in touch with my ex-husband or his father/family (I learned about her passing through a mutual friend), but I felt sad and freaked out, both for her/her family and for myself.
This is what having cancer does--it makes you selfish. It makes you think and wonder about whether it's going to happen to you. I mean, of course I was sorry about her passing. And it felt weird to learn about her death from someone other than my ex-husband--highlighting the estrangement from a family that I'd been married into for over a decade. But part of my sadness over her passing was also a sadness at wondering whether her fate could be my fate. Would this be my fate in another 8 years. Could I be developing cancer in my ovaries, in my uterus, as a result of the chemotherapy or just because--just because when you have cancer, there is a potential for it to spread to other parts of your body. And uterine and ovarian cancer is so difficult to detect because you can't see or feel the tumor.
A week ago I was having drinks with some friends, and someone brought up the fact that she sometimes forgot that I had had cancer. I know what she means--at least, I know why she could forget. I don't talk about it very often--I mean, it doesn't really come up in everyday conversation. And there are few visual reminders. I suppose the most prominent one is that I no longer have breasts, but since I was small to begin with and since I've learned to select clothes that don't enhance my bust (or missing bustline) it's easy to forget that there's a part of me that's missing, especially now that my hair has completely grown back in (and it has grown back thicker and darker than before, if you can believe that--I have less gray hair now than I did pre-cancer--not that I ever had a lot of white hair--I inherited my father's genes for that because he didn't go gray until he turned 50 and then "poof!" it was all overnight).
So I totally understand why my friend sometimes forgets that I have cancer, and why no one who didn't know me 2 years ago would even wonder about me and whether I'd had breast cancer because I just look like a normal, healthy woman in her early 40s (Matthew would say I look like I'm in my early 30s, but he may be looking at me with eyes of love).
But I don't ever forget. And I don't mean because there's ocular evidence everytime I shower and look down at my scars. I mean because I feel like being a person with cancer--having experienced chemotherapy and the various surgeries I had related to my cancer diagnosis--that's now all a part of who I am. I think about being a person with a cancer diagnosis (notice that I still don't feel comfortable calling myself a "survivor") in the same way that I think about myself as a woman or as an Asian American. These identities are part of who I am in such a naturalized, almost essentialized (I use that word, hesistantly, since I'm not trying to say that there is an essentialized element or quality to being a woman or being Asian, but perhaps I don't need to be so academically cautious in this space).
I've internalized having a cancer diagnosis and going through cancer treatment in the same way that I've internalized the fact that I have an Asian face. These are parts of me that just are and that are unforgettable to me.
Anyway, I think it might be time for me to start writing in this space again. I needed some distance from thinking about myself in relation to my cancer. But I might be ready to start exploring some things that I've been thinking about...like what the best thing is about not having breasts (I'll save that for a future post). So if anyone is still reading this blog from its initial startup 2 years ago, thanks for being a loyal reader. And for anyone new, I hope that this blog provides some interesting insights for you, and feel free to leave a comment.
Saturday, October 22, 2011
Pink-tober -- do we really need more awareness?
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.
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.
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.
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