Tag Archives: cardiomyopathy

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.

Good news/bad news

First off, I want to thank everyone for the mountain of well-wishes and sweetness I’ve received. From people who don’t know me but found my blog, to family members who waited in the waiting room or by the phone, and everyone in between, I’ve been humbled and overwhelmed by all of the messages of hope that were sent my way. That had to have helped. At the very least, it made me feel loved during a time in which I needed a little love.

The first few days were pretty intense, and are very blurry in my memory. I woke up groggy and numb, but aware enough to recognize an old neighbor among the many nurses milling about the post-op room. (What a nice surprise!) For the most part, the hospital staff was all very helpful and professional. I will say that my first floor nurse was a little socially inept. Once finding out I was a psychologist-in-training, she wanted to have an in-depth conversation with me about helping her friend through the grieving process (mere hours after my surgery), and at 2AM tried to insist that we sing my favorite song. When I wouldn’t, she proceeded to pick “Hakuna Matata” from the Lion King to sing for the rest of her shift, trying to get me to join in. That’s when I pressed the morphine drip for some extra help with coping.

The drains coming out of my body having been the hardest part. They are uncomfortable and always in the way, besides just being disgusting. My hope is that I’ll get most (ok, if we’re taking hopes, I’ll go for all) of them removed this next Tuesday at my post-op appointment. My surgeon said the chances of having them all removed at 2 weeks post-op is remote, but I’m hoping anyway. I’m not super looking forward to the act of having them pulled, but I can’t wait to have them gone. All in all, though, my recovery hasn’t been all that painful. For the last few days, I’ve only used my painkillers at night. I’m a little more active each day. Key word here is little; today my big activity, which wore me out, was a 5 block walk. Every day, though, feels a little easier, and I feel a little closer to myself. So far even emotionally I feel just fine. The trick now is not to overdo it — I’m supposed to be restricting my arm movements as much as possible at this point, and that’s hard to remember sometimes. However, this is absolutely made easier by my sweet family. My mom and sister have both taken their turns staying with me and waiting on me hand and foot, and Brian has become an expert in caring for my drains while minimizing the pain.

So, since surgery, I’ve gotten both good news and bad news. I’ll start with the bad news, because I think the good news is bigger and more important.

In my post Two steps forward, one step back, I talked about how my heart had been damaged by the treatment I had been getting. The hope was that my heart muscle would strengthen within a month, and I could resume my treatment the week after surgery. On Monday, I went in for an echocardiogram to see if that had happened. It hasn’t yet. My oncologist got me in to see a cardiologist right away, but turns out there was a good reason why he had an opening the next day; he was quite possibly the worst doctor I have ever seen. He came in wearing a track suit (I will readily admit that I might have found this endearing had I liked him), rarely made eye contact, interrupted me every time I spoke even if I was answering his questions, and questioned every piece of my (very standard) treatment plan, including the fact that I’ve gotten both a lumpectomy and a mastectomy. He also admitted to me that he knew really nothing about cardiomyopathy that is caused by chemotherapy except what he had read that morning, and that he hadn’t read much. He then went on to tell me that (despite admittedly being ignorant on the subject), I would clearly be foolish to continue with any of my treatment plan, including radiation, and if I did I wouldn’t last twenty years. He did a lot of derisive head shaking and very little listening. I wasn’t impressed, and won’t go back.

So my oncologist and I have come up with another plan. We will give my heart another month to recover. I feel good about this, since during this month, my heart won’t have to undergo a major surgery like it did the last. In the meantime, we will find and schedule an appointment with a cardiologist who specializes (or at the very least is familiar with) chemotherapy-induced cardiomyopathy. This will likely be in Spokane or Seattle, since Missoula doctors need to be a little more generalized. If my heart doesn’t “bounce back” within a month, I’ll see the specialist. If it does, I can cancel if I like. I’m pretty confident we can figure this out, and that this is just another hiccup in an otherwise pretty smooth process. From the (somewhat limited) research I’ve done, this isn’t a rare hiccup in my specific treatment plan, which, like I said, is the standard treatment for the type of breast cancer I have.

Okay, now for the good news. Remember how I was lamenting that some stranger was going to dissect my breast tissue for evidence of disease? Turns out, that stranger is my new BFF. My surgeon called me late last week and told me that they found a little bit of DCIS hiding out in the ducts. That’s not a surprise — we knew we hadn’t gotten it all during my first surgery, and while DCIS is localized and practically precancer, it also isn’t very receptive to chemotherapy. But so, it’s fine that it was there, because it’s gone now, due to my mastectomy. In the right breast, there was nothing but benign tumors. In the lymph nodes? Nothing. Remember that two of my lymph nodes were positive for cancer before, so there was this potential it could have spread throughout my body? Well, it doesn’t look like it did. It looks like all of those months of chemotherapy, all the nausea, all the fatigue, all the irritation and terrible itching…. those months were worth it. They did their job. And because the DCIS that was found has been removed… it’s possible I’m cancer free right now. We still plan to do radiation, in case there’s some undetected rogue cells somewhere, and because that’s part of the treatment that’s associated with the most positive outcomes, but it’s possible I have no undectected, rogue cells. It’s possible I’m sitting here, typing, for the first time in who-knows-how-long, without a trace of cancer in my body.

And that’s worth all of it.