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:

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.

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).

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.