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.

IMG_2260

Asymmetry, Grief and Love

When I look at my naked body in the mirror, I cry.

For days, I’ve been trying to write this post, but I can’t seem to get past that first line. Where do I start? How do I attempt to unravel the layers of emotion that have formed over these past couple of weeks since my second surgery?

Let me start with some facts: The surgery successfully addressed what turned out to be a seroma, not a hematoma. (As far as I understand, the main difference between the two is that a seroma is essentially a collection of clear fluid whereas a hematoma involves blood. Both can apparently lead to Dolly Parton sized breasts.)

Recovery was, as expected, quicker and easier with this surgery than with my mastectomy. I was up and about after the first week. Unfortunately, because of the seroma, I needed a drain. If you’ve never had a drain, trust me, you don’t want one. I forgot to take a picture of my own drain, so I scrolled the internet to give those who’ve never seen one an image of what I walked around with for the last couple of weeks (and for three weeks after my first surgery).

drainMy drain was attached to my bra with a safety pin not this nifty looking eyelet. The long tube that disappears under the bra is inserted into the skin. Then, every day, I (and by “I” I mean Josh, because he usually did it) got to empty and measure the fluid like this (though my fluid was less blood red and more serus):

empty drain

Today was a good day because, after two weeks, I finally got the damn thing out, which means I no longer have to walk around with a plastic tube and container attached to my body, collecting fluid from my wound. Bulky and gross and a great way to feel like a sick person.

As for what else I hoped to accomplish with this unexpected surgery—symmetry and a regained level of comfort in my body—that did not come to fruition. My reconstructed breast (and nipple) is now noticeably smaller than my healthy breast. That, coupled with the physical scars, makes me… well, it makes me cry. I feel ravaged, ugly, older than my years (the post-chemo gray hair isn’t helping); and every time I look in the mirror, I am reminded of what I’ve lost and what I’ve been through and what lurks on the horizon as my new, biggest fear (recurrence, metastasis, telling my children I have a cancer again, missing out on all the things I don’t want to miss in their lives).

But here is the amazing thing: Despite all this— the disappointment, the self-consciousness, the crying, the fear—I generally feel happy.

Growing up, when I was having a hard time about something, my mom would say, “Go somewhere else on the canvas.” Meaning life is like a giant canvas, with, say, one group of friends in one little corner, an aspect of work in another, a particular family member somewhere else, an aching back up top, cancer down below; and that whatever the pieces of our lives might be, there are, for most of us, many of them. When one piece of the canvas bogs us down, it doesn’t mean the entire canvas has to go down with it; we can move our attention elsewhere. For the most part, this is easier said then done for me, but by some miracle, the grief I feel these days in my moments of crying is confined to those moments of crying.

canvas

This morning, I crawled into bed after my follow-up with my surgeon and had another tear-fest. I cried for all the reasons I’ve shared, and because I now need to decide whether I’m going to have yet another surgery, purely elective this time, to achieve some symmetry. There is no rush to this decision, but it weighs on me with the same guilt and shame that weighed on me when I had to decide about reconstruction. I feel ashamed by the thought of choosing a surgery I don’t need to “fix” something I don’t like about my body. Why stop with my reconstructed breast? Why not suck some of the fat out of the saddlebags I’ve always wished away? Why not erase the bags under my eyes? Tighten up my knees, which I’ve always found a bit saggy? Certainly these are choices that many people make, but they are not choices I ever thought I would make. Yet here I am considering what feels like a similar kind of choice, and it weighs on me. I would never, ever begrudge another woman for choosing reconstruction after enduring the traumatic loss of a breast, but I am struggling to find that same compassion and understanding for myself.

Time to go somewhere else on the canvas. I think I’ll linger for awhile in the fact that I am more in love with Josh than ever before, and that to feel that way after 15 years is incredible. Josh, who lies down with me in the middle of the day and tells me, while I cry, that he wants me to feel whatever I’m feeling, but then to remind myself that we will get through this, one foot in front of the next, just like we’ve gotten through everything else. Josh who sings to me, “You are beautiful, in every single way;” and who, after this latest surgery, wouldn’t let me off the couch for days after I felt like I could once again help with the kids and the house; and who is patiently waiting for me to watch Big Love and then read side-by-side in bed like the wonderfully old married couple we are.

heart love