Good-Bye and Good Riddance October!

October’s saving grace is that it is the month I became a mother and the month I get to celebrate my oldest child’s birthday (as well as my dear Mom’s birthday).

Image 1

I could otherwise do without October.

October is my cancerversary month. It’s when (one year ago) I found the lump in my left breast. It’s when (at 39) I had my first mammogram. It’s when the radiologist told me she had concerns about the imaging. It’s when I had my triple biopsy. It’s when the nurse called and said they found cancer in two of those sites and “pre-cancer” in the third. It’s when I was told I needed a left mastectomy. October is now (as of two weeks ago) also when my reconstruction failed and when I experienced what has felt like my second mastectomy in 5 months.

In addition to being my cancerversary, October is also (as so many of you know) breast cancer awareness month. Ironically, this is the first year that I’ve been aware of that. Though I was obviously plenty aware of breast cancer last month, my awareness has nonetheless been raised in the last few weeks:

I’ve become aware of outrageously insensitive campaigns like “Show your [bra] strap” and “No bra day.” I’ve learned about fabulous counter-campaigns like “Show your [mastectomy] scar.” (In case you were wondering, none of us who have been mutilated by breast cancer want healthy breasts shoved in our faces in the name of “support.” I can barely stand to watch movie scenes with women in bras because it is a painful reminder of so much that has been lost… and I have lost so much more than a body part.)

show scar

I’ve become more aware than ever of the sexualization of breast cancer. (Isn’t it cute and sexy, all wrapped up in pink? Shall we flash some ta-tas and call it awareness?) How is it that events/ads like the one below are allowed to flourish? How is it that the entire world isn’t too utterly disgusted and ashamed to let this  happen?:

breast cancer sexualization

I’ve become more aware than ever of the commercialization of breast cancer. (Buy these cancer-causing products and 1 cent will be donated to breast cancer awareness! For just $___.99, you, too, can have this pink [insert pretty much anything]!) And by the way, some or NONE of the money will go to breast cancer research/support/awareness.

pink kfc

I’ve also become more aware of how much money goes to “awareness” and how little money goes to actual research for an actual cure so that actual women will stop dying from a disease that actually does kill.

This month, I’m aware of how afraid I’ve become. I’m aware that living with this new fear—the fear that I won’t get to watch my children grow up—may be my new normal.

I’m aware of how apart I feel from most people in my life. I’m aware that most people in my life not only cannot relate to what I’ve gone through. They also don’t get the extent to which I am still going through something.

I’m aware that most people think my family and I are through the worst of it; that we’re on the other side of cancer. Just as I’m aware that in many ways, the hardest part has just begun.

Abandoning Fear, and Fearing with Abandon

I’ve been avoiding the blank page. I’m okay. Some hours I’m better than okay. But I continue to feel more shut down—both with others and with myself —than I have since I was diagnosed last October. I am carrying on with my life just fine. I get out of bed every morning. I shower and eat and go to meetings and take care of my children. I do what I need to do for work and smile at people on the street. I even laugh at times. But my heart does not feel open the way it usually does.

Over the last year, I’ve thought a lot about what I want to take away from my experience with breast cancer. Just last month, I wrote about how cancer is teaching me to prioritize joy—and to abandon fear in order to do so.

That has not changed.

However, this month I am steeped in a new awareness: I am aware that cancer has also taught me to be afraid in ways I never was before.
fear chasing

As I write this, I am self-consciously aware of sounding depressed and negative. I feel the need to say, “I really am okay.” (And I really am okay.) I feel the need to say, “I’m a very happy, positive person.” (And I am a very happy, positive person.) I feel the need to say, “I know I have much for which to be grateful.” (And I do have much for which I am grateful.)

But I also feel the need to say that right now, I am hurting and scared and angry and uncertain and lonely. I feel the need to say that I feel abandoned, but I don’t know how to let people in.

hurting heart

Fears

What Do I Fear?

Being forgotten.

forgotten umbrellaI’m also afraid of the feeling of being forgotten. The 13-year-old-middle-school-I-can’t-breathe-because-my-friend-is-replacing-me feeling of agonizing, lonely, desperation.

I am afraid of forgetting. Memories that, at 40, already blur together or simply fade away. Moments of clarity that are no longer clear. (Not to mention words I struggle to retrieve, sentences I cannot construct. I am afraid that chemo has permanently altered my ability to retain.)

losing brain

I am not afraid of death or of dying. But I am afraid of not watching my children grow-up and of my children not growing up with me. (Is that the same thing as a fear of death? Is my fear of being forgotten the same thing as a fear of death? Maybe I’m afraid of death, after all.)

I’m afraid of other people dying. Specific people, like my children, my life partner, my best friend.

I’m afraid of my parents aging. Of course, there is no way around it, and my parents are aging before my eyes, and really, I’d like it to stop. (But no, be careful what I wish for. I don’t want it—don’t want them—to stop stop.)

I’m afraid of physical pain. I’m actually a total wimp about pain. If I had to pick my number one fear, it would be physical torture, which is bizarre because in what situation would I ever have to deal with physical torture? And yet, ever since I was a young child, this was my number one fear. Which is also a bit disconcerting, because why was I, middle class white girl in America, thinking about physical torture as a young child? (And why is torture the latest fad, showing up on what feels like every movie screen and TV show?)

I am afraid of not being liked. And not being loved. And not being likeable or loveable.unloveableI am afraid of cancer recurrence.

I’m afraid of the spot in my right breast that my oncologist told me not to worry about, even though it showed up on my last MRI. I’m afraid of the weird pain on the right side of my belly and the fact that ovarian cancer is nearly impossible to detect and that sugar is bad for us but I eat it anyway, along with too much dairy and on occasion, a highly processed Dorito or a piece of non-organic meat.

regret

I think that more than anything, I am afraid of life passing me by. That as I let this moment or this hour or this day slip on past without note or worth (which I do at least 1 out of 10 times if not 9 out of 10 times), the moments and hours and days will accumulate into a giant neon flashing sign that also comes with a bull horn that screams into my ear the same neon-flashing words, “You wasted your life! You did it all wrong! Too bad for you, better luck next time!” I am afraid of missed opportunities and missed joy and of regret.

Middle-of-The-Night Me

I don’t sleep like I used to. It’s not my typical insomnia of hours to fall asleep (though that happens, too). It’s restless night after restless night, many of them with hours of being awake while the rest of the country sleeps. It’s night after night of facing those middle-of-the-night thoughts. I hate those middle-of-the-night thoughts. I know not to take them too seriously. Know that everything feels darker in middle-of-the-night darkness. And yet, dark they (the thoughts) continue to be. Dark and heavy and bleak and stressful and sad.

They are not the inspiring, “What will I do with my one wild and precious life?” thoughts. They are the daunting and hopeless, “What will I do with my one wild and precious life?” thoughts. (On a brighter side, I laughed out loud this morning as I read what this writer had to say about her insomniac thinking.)

Earlier this week, I spent the night in a hotel room with 3 of my dear friends while 8 of our Imagechildren slept in hotel beds next door. I went to bed joyful about our April break getaway—emotionally filled up by watching our kids thrill over the adventure; filled up by talking for hours on hotel beds with girlfriends. In the morning, I got out of bed joyful about the day ahead—more hours of thrilling adventure; more time with girlfriends. So why, with joy on each end, does the middle-of-the-night still bring such suffering? Why, on this particular night, did I spend hours listening to the rain outside and the heavy breathing inside and the incessant voice in my head bringing up one dark thought after the next? Some detail about work: how did I not realize until now what I should have done but did not do? A changed friendship: would we ever get back to what seems lost? My upcoming surgery… and panic panic panic about everything having to do with that.

I spent this middle of the night thinking about this article and this blog post about the medical and emotional travails of reconstruction. About what feels like the looming loss of my body and of my comfort (again, physical; emotional). About what feels like a looming turning point that will forever divide my life into “before surgery” and “after surgery.”

“Before cancer” and “after cancer” carry a very different kind of significance, by the way. I was telling someone recently that though I would never have chosen breast cancer, neither would I wish it away at this point. There has been so much learning and growing and opening that I wouldn’t want to miss out on.

I do, however, wish this surgery weren’t happening. Will I feel differently somewhere on the other side? Will there be new learning and growing and opening that I am happy to receive in exchange for my breast?

I had expected the sleep to get easier on the other side of chemo. Had hoped that restful nights would seep back in just as the fatigue seeped out. (And the fatigue has seeped out! Two weeks ago, I never would have managed that 31-hour wonderful whirlwind getaway with 3 girlfriends and 8 children!) But last week, my oncologist said that no, my sleep issues are not because of the chemo—not the kind of direct result, anyway, that will improve now that the drugs are leaving my system. Rather, my sleep issues are a result of my chemo-induced menopause, and hence they are symptoms that just may stick around. (For the rest of my life? I am becoming my mother in ways I would rather not become my mother.)

Back from my 31 hours April break getaway, I did not wake up in a hotel room with friends, and perhaps that is why I woke up feeling sad. Because there was no immediate distraction to shake off the middle of the night. Though I did sleep more, I also dreamed of men with guns taking over my village. I dreamed what I used to dream again and again as a child but haven’t dreamed for years—of trying (desperately trying, such panic and fear) to find a safe corner to hide. Of never finding a safe corner to hide.

Am I hiding from the middle of the night? From my upcoming surgery? From some corner of myself? Am I hiding because these days, I struggle to answer that question: “What will I do with my one wild and precious [work] life?” When I find a way to live my passion, will I also find my safety—and maybe even a restful night of sleep?

Tell Me, How Do I Live My Passion?

One of my chemo gifts from Maggie was this long-beloved (likely by many of you, as well) poem by Mary Oliver (sorry about the formatting, no idea how to get rid of the giant spacing between lines):

          The Summer Day

          Who made the world?

          Who made the swan, and the black bear?

          Who made the grasshopper?

          This grasshopper, I mean—

          the one who has flung herself out of the grass,

          the one who is eating sugar out of my hand,

          who is moving her jaws back and forth instead of up and down—

          who is gazing around with her enormous and complicated eyes.

          Now she lifts her pale forearms and thoroughly washes her face.

          Now she snaps her wings open, and floats away.

          I don’t know exactly what a prayer is.

          I do know how to pay attention, how to fall down

          into the grass, how to kneel down in the grass,

          how to be idle and blessed, how to stroll through fields,

          which is what I’ve been doing all day.

          Tell me, what else should I have done?

          Doesn’t everything die at last, and too soon?

          Tell me, what is it you plan to do

          with your one wild and precious life?

What a perfect gift, since for weeks prior to opening this particular package, I had been exploring that exact question (not to mention the practice of being more present). For a good while, the question opened like a spring bud: glorious and inspiring, so full of possibility and hope. But lately, the question weighs on me like this east-coast winter weighed on many of you (not on me, I appreciated the fact that I was not the only one cooped up inside!); lately, the question feels heavy and dark, like a vast and sometimes hopeless unknown (or like one dark, cold winter day after the next).

What WILL I do with my one wild and precious life? More specifically, what will I do with my one wild and precious WORK life?

As I near the other side of breast cancer treatment, that question looms. How do I face the next phase of my life when I have no joyful clarity about my work-future?How do I compromise doing what I love to do—living the life of a writer—after vowing, as I faced death in a new way, to follow my passion? But how do I keep doing what I love to do when it will be time for me to get back into the game and once again bring home a regular paycheck?

How do I honor what I have learned these last months (what I am trying so hard to hold onto as I re-enter the world post chemotherapy: that life truly is short; that we can’t plan for the future because we have no idea what the future will bring; that we therefore have even more reason to savor the moment, live the moment, be the moment; even more reason to do what feeds our soul; that if we follow our passion and trust the universe, they will lead us where we need to go)? How do I honor all that while also being practical?

Which brings me to a new list of questions: Where is the difference between fear (“I need to take this work or I may not be able to pay my mortgage!”) and practicality (“If I take this work, I can pay my mortgage.”)? (Huh. Is there a difference between fear and practicality?? There must be… right?) How do I know when I am falling into an old, unwanted pattern of letting my fear guide me, versus responding to a practical need to make ends meet? And how do I balance the need to make ends meet with my unwavering, overwhelming desire to write—and not just to write, but again, to live the life of a writer. To get up day after day and spend my hours doing what I love to do (including “stroll[ing] through the fields… all day” if that is where the moment wants me; including being so present that I can see a grasshopper’s jaws move back and forth instead up and down); so that love and joy and passion and presence overflow into the rest of my doing and living and being?

flying off cliffTHAT is the one wild and precious life I want to live.

(Tell me, what is YOUR passion? What will YOU do with your one wild and precious life? I’d love a window into what feeds other people’s souls. Especially since I imagine that by sharing, we can help feed each other.)

Sharing the Guarded Facts of My Upcoming Surgery

(I think) I am ready to write publicly about my upcoming surgery.

From the beginning of my breast cancer experience, I have been very open about my diagnosis and comfortable with anyone knowing about it. I have felt rather private, however, about the details of my surgery; for the first months, I only discussed them with close friends. Though many people in my life surely know by now, they have yet to hear from me that on May 20th (just got the date this past week), I am having a left mastectomy.

uncertaintyAnd after months of being utterly torn, undecided, all-over-the-place about whether or not to do reconstruction—and about when and what type if I did reconstruction—I have decided to go with an implant at the time of the mastectomy.

Now I am staring at the blank page, not sure how to go on. Especially after baring my soul in so many other ways these past months and in so many past posts, why does sharing the fact of my upcoming mastectomy and reconstruction feel like one of those dreams where you (or at least I—have you had such dreams?) show up to work, or to the biggest party of the year, or to your children’s school, stark-naked?!

In one of her blog posts, Hareem Atif Khan shares that talking about her breast cancer—and even seeking medical attention at the first signs that something might be wrong—was hard because it meant talking about her breasts. Perhaps it’s because I am an American not a Pakistani woman that I am more comfortable talking about my breasts…. though only up to a point, it seems. I can talk breast  Imagecancer and chemotherapy for breast cancer and even surgery for breast cancer (breast, breast, breast). But talking about my actual breast—no, talking about the removal of my actual breast—suddenly makes me want to cover every inch of my body and point in the opposite direction so that no one will look at me. The real truth is, knowing that people will inevitably look at me and think, “She lost her breast,” made me feel “less-than” (and a lot of other unpleasant adjectives, too).

It took me many hours, days, weeks of thinking, talking, writing, researching, reflecting to get me to a decision about reconstruction. Though it feels like there were dozens of reasons for my uncertainty, I think I can actually pinpoint four of them.

One the one hand, there were my reasons to not reconstruct:

  1. My desire to resist a culture that makes women feel less-than for not looking a particular way.
  2. My commitment to not rush the healing process by trying to replace what is lost.
  3. My fear of surgery.

On the other hand, there was:

  1. My desire to feel comfortable in my body as I move through the world. My fear that I would not. (Is that two reasons?)

It is not that my list of “one” won out over my list of “three.” It is that the thinking and feeling behind my list of three changed.

Reason #1: I still want to resist a culture that makes women feel “less-than.” But I no longer feel the intense self-judgment about not resisting with my own, un-reconstructed chest. (I still don’t fully understand why I’d been so burdened with guilt, seeing as I’ve spent a lifetime resisting plenty on the one hand, but perpetuating the culture on the other with all kinds of behavior, such as donning make-up and high-heeled shoes.)

Reason #2: I still don’t want to rush my healing process. But I no longer feel like immediate reconstruction would be rushing my healing process—presumably because I’ve had more than five months to digest the fact that I have breast cancer and will need a left mastectomy. (Which doesn’t mean I don’t anticipate the need for more healing on the other side of my surgery. It just means that I am in a very different place than I once was.)

Reason #3: I’m still afraid of surgery. Which is why, when I started leaning toward doing reconstruction, I ultimately decided to go with immediate implant reconstruction—because if all goes well, I won’t need any additional, major surgeries (just a couple of outpatient procedures).

(I may share more about my decision-making process in upcoming posts. In the meantime, for more information about reconstruction, you might visit breastreconstruction.org. To read more about the choice to not reconstruct, I highly recommend breastfree.org.)

My Fear Is a Broken Dam

One week ago today, Josh and I met with my new surgeon (the old one being out of commission for awhile because of her own hand surgery). I wasn’t expecting the appointment to be emotional, rather just a “Hi, good to meet you,” and a standard check-in as I near the end of chemo and get ready for surgery (which is yet to be scheduled but should be sometime the week of May 18th).

It was just a “Hi” and a check-in, and yet, as soon as Josh and I were alone, I cried. I’m often surprised that I don’t cry more often, seeing as I am not only a deeply feeling person, but I also tend to wear those feelings openly. And yet, I’m not a big crier, can count on one hand the number of times I’ve cried through this experience. I admit, the crying feels good. (I also admit that though a full-blown cry-fest is rare, it’s not rare at all for my eyes to fill with tears; as my children will attest to, it happens almost anytime I read aloud a good book, for example.)

It feels good when my body makes tangible the inner emotion. It also feels good to cry with Josh, to feel his arms around me, to feel how much we are in this together.

Like earlier in the month, which was a second time I cried. (Twice in one month!) Josh and I were propped up in bed, side-by-side with computers on our laps, him studying away, me surfing breast cancer blogs as I got ready to launch my own. In the last few weeks, it seems I have suddenly been flooded with stories of recurrence: of women who, like me, were diagnosed with breast cancer at a young age. But then years later, they were diagnosed again, and for many of these women, recurrence came with metastasis.

Sitting in bed with Josh the night of my first March cry, I was reading about Lisa Bonchek Adams, mother of three who passed away a few weeks ago of metastatic breast cancer, several years after she survived breast cancer the first time. And I burst into tears. (A full-blown cry fest this time.)

Mostly, I am not afraid. Mostly, I don’t think about death and dying and leaving Josh behind and most heart-wrenching of all heart-wrenching thoughts, leaving my children behind. Mostly I don’t think about not seeing them grow up, about not watching them fall in love and about missing their first broken heart; about never seeing their first apartments, never knowing what they’ll do for work, not watching them become parents themselves.

But in moments, like the other night, the fear rushes through me like a pounding river, like a broken dam, like a flood. And in its wake is a tremendous grief. Grief about something that hasn’t happened yet and hopefully never will happen, but it could, it could. And Josh and I know that more than ever now. That life is tenuous. That this moment really is all we have for sure.