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.
Sunday, June 5, 2011
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.
Friday, January 14, 2011
Learning my limits
OK, here's a truth. I'm tired. I don't know if I'm more or less tired than I was during chemo and post-surgery. Probably less tired. At least physically it's easier for me to move around. But I *feel* fatigued. On many levels.
I think I've downplayed my exhaustion for a few reasons. Primarily I think that I have a hard time accepting that being tired and not having a lot of energy or energy in reserve, which I think is the more accurate description for my condition right now, is part of my new reality. And I think I've been reluctant to accept this because I have been concentrating on being BETTER--on healing and resuming my regular routine and a sense of normalcy.
But the truth is, I'm tired a lot. I just don't have the energy that I used to have. And what I mean by this is my life pre-chemo/surgery. My life pre-cancer diagnosis. And my fatigue and exhaustion aren't just physical--it's also mental and emotional. It's a new inability to handle stress in the same way. And a recognition that I need to be as gentle with myself as possible. To really cut myself slack. To not demand too much of myself.
In short, I need to learn my limits--my physical limits but also my mental/emotional limits.
And this is a hard thing for me to do. I'm normally a very high energy person. And I'm a multitasker who is a perfectionist and who burns the candles at both ends (and sometimes in the middle). I have extraordinarily high (overly high) expectations for myself (and for those close to me, unfortunate at times, I realize) and in general I feel like I should deliver on those expectations.
But I can't right now. Pushing myself, something I'm used to doing, is just not an option. I don't have it in me.
Case in point: after teaching back-to-back classes yesterday, I canceled my office hours and collapsed on the couch at home, pretty much not getting up until I collapsed in bed (where I promptly fell asleep the minute my head touched my pillow). Normally teaching back-to-back classes and holding office hours would leave me tired, but not "bone-dead-I'm-going-to-pass-out" tired.
This is my new reality. And it reminds me that teaching takes energy. Emotional and mental energy, in addition to physical energy. I think I forget this because I enjoy teaching and because I've been doing it for so long now that it almost seems like it is second nature to me. But it's work--it takes work to be a good teacher. And I'm not sure how organized or coherent or lively I was yesterday. I know I forgot to share some basic information with my students about their assignments--leading me to follow-up on email. I know that I felt scattered and a bit dis-organized during the first hour of teaching, perhaps a consequence of being out of the classroom for so long. And I know that I was surprised by all of this.
Which I shouldn't be. I shouldn't be surprised that teaching is going to be different for me this semester. That my body is different. I am different. And I should be gentle with myself. To not demand too much of myself, especially in these first few weeks back in the classroom.
And yet...I'm disappointed. Disappointed in my body for not having more energy. In myself for not being more organized and accomplishing more. Disappointed that I am still healing--that I'm not healed (past tense). It's silly, I know. Healing is something that can't be rushed. And I know that if I were someone else, I would tell me to be more patient and to be gentle and that what I went through was a big deal and I have to learn to limit myself and it's not a failing or an indictment on my character or sense of self.
Why do we often become our hardest critics? And is this just because I'm an academic who deconstructs and critiques others for a living?
(sigh)
Maybe I just need a mantra to get through the next few weeks and months. Be gentle Jen...be gentle Jen. Hopefully I can learn to take my own advice.
[Update/Aside: If you saw the post below, you'll see that Matthew and I adopted a new dog, Bella. Unfortunately, we had to return her to her foster mother last week Monday when we realized that Bella had some very aggressive tendencies. Specifically, she tried to attack Bruno 3 times and was also aggressive with our friend's dog, Squirrel. It was a hard decision, but at the end of the day, we feel we made the right choice because we couldn't live with the tension and with the uncertainty of her attacking Bruno. And it's also part of learning my own limits--it wasn't the right time to get another dog because teaching is just about all I can handle right now.]
I think I've downplayed my exhaustion for a few reasons. Primarily I think that I have a hard time accepting that being tired and not having a lot of energy or energy in reserve, which I think is the more accurate description for my condition right now, is part of my new reality. And I think I've been reluctant to accept this because I have been concentrating on being BETTER--on healing and resuming my regular routine and a sense of normalcy.
But the truth is, I'm tired a lot. I just don't have the energy that I used to have. And what I mean by this is my life pre-chemo/surgery. My life pre-cancer diagnosis. And my fatigue and exhaustion aren't just physical--it's also mental and emotional. It's a new inability to handle stress in the same way. And a recognition that I need to be as gentle with myself as possible. To really cut myself slack. To not demand too much of myself.
In short, I need to learn my limits--my physical limits but also my mental/emotional limits.
And this is a hard thing for me to do. I'm normally a very high energy person. And I'm a multitasker who is a perfectionist and who burns the candles at both ends (and sometimes in the middle). I have extraordinarily high (overly high) expectations for myself (and for those close to me, unfortunate at times, I realize) and in general I feel like I should deliver on those expectations.
But I can't right now. Pushing myself, something I'm used to doing, is just not an option. I don't have it in me.
Case in point: after teaching back-to-back classes yesterday, I canceled my office hours and collapsed on the couch at home, pretty much not getting up until I collapsed in bed (where I promptly fell asleep the minute my head touched my pillow). Normally teaching back-to-back classes and holding office hours would leave me tired, but not "bone-dead-I'm-going-to-pass-out" tired.
This is my new reality. And it reminds me that teaching takes energy. Emotional and mental energy, in addition to physical energy. I think I forget this because I enjoy teaching and because I've been doing it for so long now that it almost seems like it is second nature to me. But it's work--it takes work to be a good teacher. And I'm not sure how organized or coherent or lively I was yesterday. I know I forgot to share some basic information with my students about their assignments--leading me to follow-up on email. I know that I felt scattered and a bit dis-organized during the first hour of teaching, perhaps a consequence of being out of the classroom for so long. And I know that I was surprised by all of this.
Which I shouldn't be. I shouldn't be surprised that teaching is going to be different for me this semester. That my body is different. I am different. And I should be gentle with myself. To not demand too much of myself, especially in these first few weeks back in the classroom.
And yet...I'm disappointed. Disappointed in my body for not having more energy. In myself for not being more organized and accomplishing more. Disappointed that I am still healing--that I'm not healed (past tense). It's silly, I know. Healing is something that can't be rushed. And I know that if I were someone else, I would tell me to be more patient and to be gentle and that what I went through was a big deal and I have to learn to limit myself and it's not a failing or an indictment on my character or sense of self.
Why do we often become our hardest critics? And is this just because I'm an academic who deconstructs and critiques others for a living?
(sigh)
Maybe I just need a mantra to get through the next few weeks and months. Be gentle Jen...be gentle Jen. Hopefully I can learn to take my own advice.
[Update/Aside: If you saw the post below, you'll see that Matthew and I adopted a new dog, Bella. Unfortunately, we had to return her to her foster mother last week Monday when we realized that Bella had some very aggressive tendencies. Specifically, she tried to attack Bruno 3 times and was also aggressive with our friend's dog, Squirrel. It was a hard decision, but at the end of the day, we feel we made the right choice because we couldn't live with the tension and with the uncertainty of her attacking Bruno. And it's also part of learning my own limits--it wasn't the right time to get another dog because teaching is just about all I can handle right now.]
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