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

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

I am not your next statistic

Touch me.
I am a real person.
I am not your next statistic. I am not your next appointment,
something to be crossed off a list
once you’ve prescribed your meds and followed your protocol and
check check check
did everything you’re supposed to do when dealing with a breast cancer patient.

Touch me.
I feel different than the breast cancer patient who just left,
different than the one who will sit in this chair when my slot is up.

Follow your protocol
but don’t forget that you are treating people.
Real live human beings.

Were you taught that humans have two ears and two eyes and two legs, a nose, a heart? Have you noticed that that isn’t always the case? Have you noticed that even when check, check, check, we have two ears, eyes, legs, they look different?

Touch me.
And then: See me.
And then: Listen to me.

I am human,
and you, doctor, work for me.

Crashing in the Wave

I stumble over my answer to the question, “How are you?” because I don’t really know what’s going on with me these days. Except that I’m not fabulous. Some hours I’m not even sure if I’m okay. But then I think maybe I am, after all. (In other words, there are all kinds of confusion, not to mention all kinds of emotion, swirling around on my insides.) How can someone (me) who analyzes and reflects upon and over-thinks just about everything not even know how I feel?

Last night, I told Josh, “I feel separate from everything.” Not in a woe-is-me, no-one-understands kind of way. In an I-feel-like-I’m-in-a-haze kind of way, and I can’t even access myself, much less fully engage with the world or people around me. At times, I feel like a wax figure, fake-experiencing my day.

Except mostly it’s not so neutral-numb-feeling, because I also feel like my whole body is a grasping fist. (I am trying, oh how I am trying to let go, to let that wind carry me, but I feel like I am in an almost constant state of contraction.) Every – little – thing – overwhelms me. How is it that prior to my breast cancer diagnosis, I was working close to full time, more or less single-parenting two kids while my husband put in his 80-100 hours/week of grad school, engaging in a busy social life, making home-cooked meals and paying bills and cleaning my house and returning phone calls… and now, I can barely get my kids a cup of water without feeling like there is too much on my plate? That’s a bit of an exaggeration, but only a bit. I’m not working and my husband is home for the summer, so my main commitment is co- (not single) parenting and getting to doctor appointments, and yet (here it is again): every little thing overwhelms me.

HeadOnDesk But here’s the other thing that scares me: I’m not keeping up. I’m used to overwhelm, but I’m also used to that overwhelm making me highly productive. Thanks to my Type-A personality and fairly constant free-floating anxiety, I’ve gotten a lot done in life (successful career, happy kids, hand-made gifts, clutter-free home). So the fact that it takes me days to listen to my voicemails (I’m so sorry) and that the other day someone emailed my mom looking for my new address because I hadn’t gotten back to her (nope, no new address here) and that I haven’t read the newspaper in weeks (just keep looking over my shoulder as I slide it into the recycling bin, hoping no one will catch me being terribly uninformed while also unnecessarily destroying trees)—well, it’s disconcerting.

For decades, I have longed to be less Type-A because I have longed to be less anxious, more laid back, more able to, say, sit still rather than being in constant-doing-motion. When I was in chemotherapy and as still as I’ve ever been in life, I had one of those “cancer changes you” commitments to once and for all live a slower, simpler, calmer life. I say this because, if dumping my unread paper in the recycling bin and letting people wait before getting an email response was making me more relaxed, I’d rejoice. But the fact is, now I am anxious and unproductive… which only makes me more anxious. (Not to mention bummed out that my cancer-commitment to change my life isn’t working out so well these days.)

And just about everything gives me yet more reason to feel anxious. Like finding this blog that I absolutely love: Invasive Duct Tales. I literally (yes, literally, not figuratively) feel like I am reading my own writing at times. Which sounds egotistical, that I love it because I love my own writing; but I love it because I feel like I’ve found someone on the internet to whom I can relate—someone who makes me think, “Me too!” And of course there is comfort in that. But reading it yesterday, I suddenly felt the opposite of that expansive-love-feeling; I felt that contracted-anxious feeling, because she’s a successful blogger with awards and gazillions of followers and cancer-has-opened-unexpected-doors opportunity and me, all I am is a wax-figure lump surrounded by unopened mail. (You really should check out her blog, though. In fact, I thought about simply including a link to her most recent post in lieu of composing my own since I felt like 92.4% of what she wrote could have been describing me, including the fact that her husband is named Josh—that, and how she describes her mood, and her reference to “riding the wave” which is how I’ve described my cancer experience and hence titled my own blog, really did make me wonder for a second whether I had somehow gotten confused and truly was reading my own writing.)

Writing this post has me thinking a few new things:

  • I sound like I am describing a depressed person, which is eye-opening, since I’ve really felt like I wasn’t depressed anymore; but maybe I have a touch of it after all.
  • Does this post really have to do with breast cancer, and isn’t that what I’m supposed to be writing about here: riding (writing) that wave? Have I derailed? And either way, aren’t people sick of hearing about my emotional state? I can add that to my list of anxieties. I’m (sort of) joking.
  • I actually think my current state has everything to do with breast cancer. With my hormone treatment. (I’m going to keep blaming it on that, okay? It makes me feel less pathetic, less like it’s my fault that my family has to put up with irritable, unpredictable me.) With the fact that I don’t feel comfortable in my body anymore and even wonder whether reconstruction was a mistake. (I’ll save that for another time because I can’t handle opening that door any wider right now.) With my fear that the cancer will come back. With the fact that I look at my daughter and wonder, “Will she have to go through this some day?” With the fact that my body feels tired and old and broken down by months of treatment and even though everyone keeps saying I’ll get my stamina and strength back—that, for example, I’ll be able to run faster than an 11-minute mile or more than 3 miles in a row again—I’m really not so sure.
  • It’s time to get back to my gratitude practice.

This Week’s Digest

I have a bad habit of torturing myself with what has come and gone. It often sounds like this: “Last week at this time, I was waking up on vacation; now I’m…” “Last month at this time, I was getting ready [for something wonderful]; now it’s over.” I’ve done a fair amount of looking back during my breast cancer treatment, not always to torture myself, but rather to reflect on and take note of all the changes in my life and in my body.

Lying in bed this morning, my mind did a lot of, “Last week at this time…” and I’m happy to say, that today, I came out on top.

Last week at this time, I was struggling to get out of bed mornings and sometimes not getting out of bed much at all. Now, even though I admit it often feels hard upon waking to face my life and my day, I do get up, every single time, and once I do, I feel okay. Sometimes even joyful. And either way, more solid.

Last week at this time, I was barely moving my left arm, never lying on my left
Image 1side, and wary of hugs. Now I am still tender on and a bit protective of my left side, but
I can reach and lift and hug and carry again.

Last week at this time, I was still more exhausted post-surgery than I was through chemo, and when I got out of bed, it was to spend most of my day on the couch. This week, I went for three, two-mile runs. I also went to the farmer’s market and bowling in Shelburne Falls and to a school assembly and out to lunch with friends, and this weekend, I am going to the mountains with my family.

Last week, I cried in my radiation oncologist’s waiting room, so desperate to be done with all of this, so desperate for things to be a little easier. This week, I took it in stride that I have to go to Boston (a couple of hours away) for another opinion about how to proceed with radiation. (My radiation oncologist is torn about whether or not to radiate my lymph nodes. Torn about whether the risk that would bring to my heart and lungs outweighs the risk of cancer recurrence. I’m trying not to think about that too much—that those are my options: either potentially damaging my heart and lungs or potentially dealing with breast cancer again.) And I am taking it in stride that if I radiate my lymph nodes, and if my heart is too close to those nodes, I may have to do my radiation in Boston (where they have a machine for better protecting the heart). Getting treatment in Boston would mean figuring out how to spend most of summer there since I can’t (or won’t) drive four hours every day for six weeks of radiation.

Last week at this time, I was physically and emotionally stopped. Now, I am on the move again, slowly returning to a life outside the confines of my home and my head.