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.

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.

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.

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.

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

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]

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.