Out On A Limb IV: Is Anyone Listening??

It was Thursday, December 3, 2015. I was rushing to rehearsal for a play I was cast in and I was late. My daughter Charley was in the back of the van squealing with delight at the fact that she was going to get to come with me (and stay up past her bedtime). I was trying to drive like a decent human being while cramming a quick burger down my throat for dinner. My cell phone started making its tinkling ring tone and when I look down I saw that it was my breast surgeon, Dr John Kiluk. “Oh how nice,” I thought to myself, “Dr Kiluk must be calling me to tell me that the biopsy is fine because he knows I’ve been worried.” Folks, denial is a powerful thing because a doctor never calls at 8pm with good news….

“Cosi, I just saw your biopsy results and I know we had said that we were not expecting anything—but there is a little surprise…..it’s cancer.” The rest of that conversation was a blur—the tantalizing smell of my burger was now nauseating and my sweet daughter’s chattering voice was preventing me from hearing my doctor as he tried to calm me down. I could hear my own voice becoming hysterical–something with which I was unfamiliar because let’s face it, after training in a trauma ICU (and four kids), it takes a lot to ruffle my feathers…

Looking back, I now realize this was the beginning of a long communication I would have with my clinical team and it started at that very moment.

Communication is part of our human identity—so much can be conveyed with simple words, a gesture, a quick look. Relationships can be built and also destroyed on good or bad communication respectively. We use it in every aspect of our lives. I never appreciated the importance of good communication as I did during those months of being a patient, the past 12 years of being a mother, and 15 years as a physical therapist.

After that fateful conversation, Dr Kiluk cleared a space in his schedule for the very next day—I was his last appointment on that Friday. Already, with that simple gesture, he conveyed to me that I was important to him and that he was going to do what was necessary to help me get through this—even if it meant sacrificing some of his precious time with family on a Friday evening.

While my husband and I are both clinicians, we had never played the role of patient for anything this significant. Dr Kiluk patiently took us through the nature of the cancer, the options for treatment, and most importantly, a plan of attack. He then sat there (for heaven knows how long) and answered all our questions—he didn’t budge until he could tell that we were done. I knew I would be able to trust my life in his hands and those of his team. For the next year, I was also treated by Dr John Smith (plastic surgeon), Dr Susan Minton (oncologist) and Dr Hatem Solimon (oncologist) as well as countless members of their staff at Moffitt Cancer Center. It took a huge team to help ‘lil ole me overcome this terrible illness and communication was key.

There was never a missed detail or technicality—no ball was dropped. My treatment ran smoothly because the right hand was talking to the left and everyone was talking to me. I have worked in my fair share of good hospitals and I was impressed. All I had to focus on was following the treatment plan that had been carefully laid out. It’s not to say there weren’t several options and twists along the way, but they explained and guided me to choosing the best path to kicking cancer’s ….rear.

Now in comparison, being a patient was the easy part—-being a mom with cancer, not so much.

At the time, my oldest was only nine years old and my youngest was a tender two years–with two siblings in between. We knew we wanted the kids to hear it from us first before we informed our friends. At the time, we didn’t know if I would need chemotherapy or radiation—we didn’t even know for certain how advanced the cancer was—-so we told the kids everything.

We talked to them about breast cancer and what patients go through–surgery, chemo, radiation–no bars hold. We answered all their questions as best we could in terminology that they could understand. And then came the inevitable question, “Are you going to die Mami?” I answered it truthfully, “I don’t know—I do know that Mami is not going to die today or tomorrow and we are going to pray for strength and guidance.” It scared me to pieces to say those words because it placed my mortality smack dab front and center.

In the months that followed, I came to be thankful that my husband and I had been so up front with the kids. Death was not a taboo topic to discuss and talking about it took some of the fear away—it opened up beautiful discussions as to what happens to the immortal soul when it shuffles off its mortal coil. Some of the conversations left us in tears, some with a renewed sense of faith and strength to face what might come ahead. My kids were empowered by being able to talk and communicate with us and we, in turn, derived a sense of peace.

In a previous blog (“Why Amputee?”) I spoke of mentors who shaped my growth as a physical therapist. While Curtis Clark taught me everything I know in treating amputees, Paul Kleponis taught me how to talk to patients.

Paul is a big guy—at least 6’ in height and he commands the attention of the room when he walks in. Immediately you get the sense that someone of authority has arrived. His clinical skills are without question. But what makes Paul such a great clinician (and teacher) is his ability to talk to patients.

Oftentimes in my rookie years, he would take me with him to some of his more challenging cases. He would stride into the patient’s room with his commanding military presence. You assumed he was going to launch into a discourse and lecture the patient—he was (and still is) after all, one of the most experienced clinicians there. Instead, he listened. He asked questions. And then he would listen some more. After the patient expressed their discomfort/displeasure/discontent, he addressed the root of the problem—-sometimes it was the patient’s fear of pain—sometimes, fear of what lay in store ahead—oftentimes, it involved a person’s loss of control over what they were experiencing and in their efforts to make sense and regain control, they lost perspective of what they need to do to ensure their recovery.

You would see the patient begin to relax—their shoulders would come down off their ears and their respiratory rate would go back to normal (whew!). Then Paul could get to work and do the “technical PT stuff.” Sometimes it would take him ten minutes, other times I would be in the room with Paul for up to two hours as he carefully navigated the patient’s psyche—in each case, the bond of trust was solidly built between patient and clinician and because of this, patients were (and still are) successful in Paul’s care.

Before I became a cancer patient, my communication skills were something I considered to be a valuable, solid tool in my cache of clinical skills. Now after being on the other side of the hospital bed, I find communication to be my most powerful asset. I often find myself trying to “channel” Paul (minus the mustache and crewcut).

There are many times I will tell patients that when they finish their course of physical therapy, they will know more about their condition than I do. During treatment, I do my best to educate them about what their bodies are trying to overcome. I answer as many questions as I can and when I don’t know the answer (hey, I’m human!), I search for one. My children, my husband, and I drew strength from being able to express ourselves during those terrible months of treatment. My patients gain strength from learning about their impairments/disease processes and being able to discuss their needs or concerns in order to be victorious with their struggle. It is rewarding when I see their eyes grow bright when they come to the realization that they are not helpless and can advocate for themselves and their health. The quintessential “aha!” moment….and it never gets old….

So….what’s on your mind?