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).

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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

A Conversation with my Son

…Which I am sharing as a way to share what happened with my surgery last Wednesday, October 14:

“How’d it go today?” Harrison asked, somewhat tentatively. He’d spent the afternoon at a friend’s and was now lying next to me in bed.

Big breath. “It was hard,” I answered, just as tentatively. And then, worried that he would take that to mean there was a new medical concern, I said more. “It’s nothing at all for you to worry about. But they couldn’t make me a new breast, so now I don’t have one. I wasn’t prepared for that. I’m very sad.”

“Does that mean you’ll never have breasts?”

 “Well, I still have one. I’ll need to decide whether to have another surgery to make me another. But if I don’t have another surgery, no, I’ll never have a breast.”

 “Oh. I’m really sorry, Mama.”

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I can’t muster much more than that, other than to say that I am grieving and I am angry and I am rather shut down from the world.

And so it continues…

I feel like this:

head against wall

And this:

rage

And this:

crying baby

Last week, I was finally getting back on my feet: got the okay to exercise again and ran for the first time in a month; hired a sitter and danced a night away; embarked on my first big work trip in ages. But instead of truly getting back on my feet, I got another seroma. I’m having surgery, again, this Wednesday.

I was already feeling a swirl of emotion before my breast started swelling and throbbing again:

I was feeling daunted by the long road ahead of me toward a full recovery—feeling my lack of strength and stamina, my inability to exercise like I used to, to travel without ensuing exhaustion.

My surgeon says that this time, he doesn’t want me to exercise for at least 4-6 weeks. The road is feeling even longer, even more daunting. People assure me that I’ll get my strength back, but I’m not so confident. I am no longer the 36 year-old who ran 20-25 miles a week, often in 8-10 mile stretches, while working and parenting and socializing and dropping down for 20 push-ups when I felt like it. I’m now the 40 year-old who has been beaten down by a year of toxic treatment and two going on three surgeries and who can barely get through 3 miles at a snail’s pace; and when I do get through 3 miles at a snail’s pace, I then need to lie down on the couch to catch my breath and make sure my legs don’t buckle beneath me.

Even before this most recent seroma, I was feeling like people were done with my cancer, and I don’t blame them. It’s been a year, and trust me, I’m done, too. Except I’m not done.

I’m not done because I need to have yet another surgery and then who knows how many more after that, because who knows why I keep getting seromas and how to make them stop. But even before this latest medical frustration, I wasn’t “done” because as good as I am at feeling grateful for all the wonderful aspects of my life, I am also just on the other side of thinking I was going to die, young. And I am all too aware that I still could. That 30% of women with an early stage breast cancer diagnosis develop metastatic breast cancer. That my young age only increases my odds: More years during which my cancer could come back. For better, but also for worse, life will never be the same for me (or so I imagine, and so I hear from other women who have walked a similar road). I imagine I will forever feel the shadow lurking in the corner.

What, then, does “done” really mean? Will I ever be done with breast cancer?

Harrison expressed similar concerns when Josh and I told the kids this morning about this next surgery. It doesn’t help that Harrison turns ten next week and my breast cancer is, for the second year in a row, a dark shadow over his birthday festivities. But he said that even though he was disappointed about his birthday, that wasn’t the main upset.

IMG_2251“It just seems like it’s never going to be done,” he said again and again. “I want it to be over, and it feels like it’s never going to end.”

What is there to say to that other than, “I know” and “I feel that way, too” and “I’m so sorry you have to deal with this”? Of course I said all the positives I could, as well. But I am careful not to tell my children that I am going to be fine and that everything is going to be okay, because of course there is no way to know what will be.

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