Monthly Archives: January 2014

my puppy taught me about empathy.

About a week after surgery, I went and saw a cardiologist to address my reduced heart functioning caused by chemotherapy. It didn’t go well. I’ve written about this before, but basically the guy told me I had about twenty years to live with my current heart functioning, less if I went ahead with my cancer treatment as planned. He gave me no ideas on how to help myself heal, derisively questioned my care up to that point, and (perhaps most infuriating at the time), opened my shirt to examine me without warning or permission. Again, this was one week after my double mastectomy, so I was extremely sensitive and protective of my chest. Even had it been before, though, it’s my body, he should ask. Or at least announce.

After writing about my experience, I found out he is actually a friend of a good friend, one who I respect and value. Apparently he’s a very smart guy and does well in his field.  My friend, who is one of the smartest people I know, even called him a genius. Given that information, I started questioning my decision to never return to his office; if he could give me the best care, maybe I should try and stomach his lack of bedside manner. Or any manners, for that matter. But… he’d started out our appointment by saying that he didn’t know anything about my condition, except the one article he had read that morning, so I decided to look for someone with more experience with my specific issue.

Fast forward several weeks, and I found myself with a cardiologist who couldn’t have been more different. She had been suggested to me due to her experience with similar people, both patients and her own family members. She treated me warmly, asked about my life to put me at ease, and reassured me that I could live a long and full life, even if my heart functioning never improved. She talked to me about ways in which I could help myself, which was empowering. She left me feeling hopeful and comforted.

Thing is, when you get down to the nitty gritty of it, she didn’t change the direction of anything he said or the medication he had prescribed, and even agreed that not much is known about what I have. So why was my experience so different? She treated me with empathy. I’ve given a ton of thought to why that made such a difference to me, because it did. Here’s what I’ve come up with: when I was meeting with him, I was immediately put into a defensive mode. While I was trying to listen to him, I was also having an internal dialogue about whether or not I should just leave, if my emotional reaction to him was unreasonable, etc. So I had a harder time hearing what he was saying, or engaging in a conversation with him (not that he let me utter one sentence without interruption, but still). This, by default, made me a passive participant in my own healthcare. It made me feel disempowered. I shut down when I feel disempowered, while I rage internally. He may have the best knowledge his field has to offer, I don’t know. But for me, it was inaccessible, because he didn’t respect me enough to try and empathize, or even show a little compassion. So his knowledge was all but useless to me. She, on the other hand, made it safe to ask questions, share concerns. She made it so my brain didn’t have to engage in a fear-based inner dialogue, and could focus on the information she was trying to share. She made her information accessible to me. She empowered me. I hear her every day when I walk my dog or eat my vegetables or engage in mindfulness meditation. I hear her and am comforted that I am doing all that I can.

Clearly, I’ve been festering about this for a while now, since my appointment with him was in November, and hers was several weeks ago. But it became relevant to me again the other day indirectly, when I needed training for my new puppy. Let me back up a little.  People who provide therapy to kids and their families have a common complaint that parents want to drop off their children with the therapist to “fix them.” To really get at an effective solution, though, parents need to be involved. Otherwise, you’re just sending a child back into a dysfunctional situation. We joke about it, we complain about it, but implied in all of our discussions, as much as we consciously work to be as judgment-free as possible, is, in fact, judgment. Parents should want to be involved in therapy. They should want to do whatever it takes. When we make this judgment, we are experiencing a failure of empathy.

So fast-forward to my need for puppy training. There is this newly adopted puppy in the house, Grover, who is wreaking all kinds of havoc. He apparently has entered adolescence, so his play has changed to include jumping and nipping. When I’m being dramatic, I like to say that he lunges at my jugular with his teeth bared and mouth foaming, but really it’s usually my arms, and he’s never broken the skin. Yet. So, I got to my breaking point, and scheduled a private lesson with a pet trainer. (Who, by the way, was fantastic. If you need one, check out SIT Happens). When we got there, she started her explanation about how dog training is actually about training the owners, and I immediately noticed I was feeling sad and embarrassed. After thinking about my reaction, I realized it was because, if I’m being honest, I wanted her to fix Grover.  I wanted it to be her responsibility. I wanted to go home with a perfectly-behaved dog. What’s more, when I adopted a puppy, I apparently wanted a puppy on my terms. I wanted him to have puppy exuberance, but only when I felt like it. (To be fair, the timing isn’t the problem so much as being used as a chew toy is). I wanted him to be my vision of a puppy, not his own.

But in that moment, I felt for those parents who just want their children to be fixed by the therapists, because I felt the same thing. I recognized the desperation and frustration they must feel. I could feel how at-the-end-of-their-rope they must be to even bring them in. I realized that I hadn’t really understood this before, and that made me sad and embarrassed at my failure of empathy. I have been complaining about how this cardiologist couldn’t show me a little compassion, let alone empathy, when I have been in danger of doing the same thing to my clients myself, without even realizing it.

So now, thanks to Grover, I start a new semester meeting new client families, ready to accept them with empathy. Hopefully, for my client families, I can be the voice that empowers, rather than the one that shuts them down. One that comforts, rather than angers. One that stays with them, because I make the information accessible.

I’m still mad at that cardiologist, though.

active participation

I feel as if I’ve entered a new phase of my treatment and recovery. I think it’s probably most accurate to say that up until recently, I’ve been mostly a passive participant in my cancer treatment. My medical oncologist told me what chemicals they would be using to fight my disease, and subsequently nurses administered the chemotherapy while I sat there and watched. My surgical oncologist told me that best practice involved surgery, and I went under anesthesia while she removed my disease. My radiation oncologist informed that radiation for 6.5 weeks would dramatically reduce my risk of recurrence, so I go in like a good little soldier every weekday while the techs radiate my left chest wall. After that is done, my medical oncologist will prescribe for me anti-hormone therapy, given in pill form, which will also reduce my risk of recurrence, since my cancer is (was? I’m not quite sure which tense to use anymore) estrogen-receptor positive, meaning estrogen encourages its growth. I will take that for five years, because all three of my oncologists (plus several years of research) have told me to.

But the further I get into treatment, the more active I am becoming in my own recovery. At first, this was scary, because it involved deciding which doctor to believe, since there was disagreement as to whether or not to continue any kind of cancer treatment, due to my compromised heart functioning (more on that in a future post). My reaction to having to decide for myself which way to go, after passively allowing others to care for me for so many months, was a bit on the panicked side. I’m not trained for this! What if I choose wrong! Can’t someone else just tell me what to do?? But after making that first decision (deciding to believe the radiation oncologist who said he could protect my heart, and who was way nicer than the cardiologist who I didn’t like anyway), active participation is WONDERFUL. I feel like I finally have some control over what happens to this life I’ve learned to value. I listen to my doctors’ recommendations about strengthening my heart and further reducing my cancer risk through diet, exercise, and mindfulness meditation, and implement them with gusto, tailoring them to fit who I am and how I live. I do my own research on how to reduce the discomfort of burning during radiation, and add that to what my radiation oncologist says. But most of all, I am rethinking old decisions, rethinking what I should look like in this post-cancer life.

As I wrote about in Anticipating Surgery, I was incredibly nervous, during the weeks and months prior to surgery, about how I would look post-mastectomy. I was nervous that my new appearance might cause me to sink into a depression. I thought about how I could best dress to camoflauge my new shape. I dreaded seeing people I knew. The reality, though, is that I don’t mind my new look at all. In fact, I kind of like it. It’s true, I’m all scarred up (7 in all!) and misshapen. No, let me rephrase that: I’m shaped differently than I was before, and differently from how the typical female body is shaped. I don’t have the smooth, rounded, gender-typical lines that I’m used to. And it’s not pretty. But it’s interesting. My body tells a story now. It reminds me of the strength that I had no idea I possessed before all of this. It shows that my life is different, unique, that I have something to say. And I’m finding, to my surprise, that this is more valuable to me than pretty.

So I’m rethinking reconstruction (and reserve the right to rethink it again. And again). My new form of active participation in my cancer treatment is to rethink old decisions. To recognize that I hated the total dependence that surgery created, and to tell myself that maybe another, more involved surgery isn’t right for me. We talk a lot about embracing body diversity. Do we honestly only mean that we should be accepting of varying heights and weights? More and more, I’m thinking that maybe to really walk the walk of body diversity, I should embrace my differently-shaped body, not camouflaging its difference, but celebrating the strength in the story that it tells.