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.
Tuesday, January 1, 2013
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.
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