Ep 1 A Day in the Life, Patient

Heather Johnston: 0:04

This is Dr. Patient, a podcast that examines all the aspects of the patient provider relationship. I'm your host, Heather Johnston, MD, a real life doctor and patient. I'm starting off this podcast with my background story so that you, listeners, can understand where I'm coming from going forward. This is an excerpt from a journal that I started keeping back in the early 1990s. When I was in the hospital a lot with Non-Hodgkins Lymphoma, which is a blood cancer, I was really sick and had what's called stage four disease. For reference, stage one is just a little cancer and stage four is almost as bad as it gets. I had been sick for a couple of months receiving shoddy care at my university student health clinics. When I was finally diagnosed back in Chicago, I was immediately hospitalized and basically lived in the hospital for about three months, then pretty regularly for weekends over the two years that I received chemotherapy. Years ago, the days I spent in the hospital turned into weeks, which turned into months. I became part of it, the hospital. I knew the paint colors, the sound of the coffee maker beeping at the nurse's station, the smell in the service elevator, the sound footsteps made in different hallways throughout the building. I knew the hospital like it was my own bedroom, which sort of was after so many weeks and months there. I knew all of the nurses, secretaries. technicians, and wheelchair transporters by first name, and knew what was happening in their lives outside of that place. They understood that sharing their outside life with me was a way for me to pretend that I was living out there too. And the windows, they were like a looking glass to some other world that was not mine anymore. Sometimes at night, I'd walk to the end of the hall and sit and watch from outside my 10th floor perch. All of those cars whizzing by my hospital on their way to someone or someplace, on their way to something actually happening in their life other than this. Those people walking out by the parking lot, or on the sidewalk, they look so carefree, so easygoing, which I'm not anymore. I'm both jealous and disconnected. I want that, that easygoing feel to life. But I know it'll be a long time before I feel it again. For now, I live with this. I'm consumed by only this. And I get tired of it. I'm tired of watching my family all gather outside my door to talk about me, about what to do. They think I can't hear them if the door is closed, but I can make out every other word. So I know that they're arguing about next steps, having teary debates and fretting about how helpless they feel. There's also arguing, which makes me want to yell at them to stop. But I'm literally too weak to manage more than a whisper. So I lay in my bed whispering at them "stop it, stop it" to no avail. My mother does not know what to do with herself. So she brings a bucket of cleaning supplies to my hospital room every other day. She knows that there's someone kind and hard-working there who's responsible for that task. But she figures that it might make a little difference, maybe increase my chances just a little. I did not understand what she was going through back then. She was just another thing that I had to worry about. Because I could see that this was breaking her, but it was also breaking me, which seemed more important. So I focused on that. Or maybe it was easier to focus on that. After I was no longer living in the hospital, I went back home to live with her and my Dad. But that did not last long. We were fighting all the time. And I really can't even remember why. It was probably largely regular teenager versus parents stuff, with some stressful cancer worry thrown into tip the scales against us. Now that I have my own children, I think I would wail and kick and scream and break things and start believing in God and then scream at Him every day at night. Then I would show up fresh-faced and optimistic for them. Maybe she was doing that and I didn't know. The truth is it's still too difficult for us to talk about. It's only been 30 years, you see, and it's still too fresh. And then the doctors come by and they also think that I can't hear them if the door is closed. I think "didn't any of them want to test that out? So they know that that can happen before talking outside a patient's room?" I hear all of my diagnoses being listed, the treatments outlined, the students' questions (which I could have answered), addressed, and the nurses piping in. Sometimes they would just walk on to the next room and my heart would plummet because really, that might have been my only chance to pretend to be normal and charming for the day to pretend that this is all very normal. My lack of hair, my thinness, my ever presence in that room, my own personal bedding instead of the hospital-issue, the persistent bucket in my lap. This is normal. And I'm just a college kid who's hanging out here for the day who will be so charming to you, you group of curious medical students and residents. I still remember the security code to the closet safe in my hospital room. Memorizing that six digit code was the only thing that got me through the extra-ordinarily painful bone marrow aspirations and biopsies that I endured in that bed. Since I could see the safe when I laid on my side. 64278 just a prick. 64278 a little bit more 64278 We need a bit more bone marrow 64278 Hmm, looks like we might need to do one more. Dear God 64278 Hold still 246 Almost done. 64278. Okay, needles coming out 642786427864278 It really did seem at times like it would never end. Illness is so consuming, so mind consuming, there just wasn't space for anything else. To this day, my hip hurts when I see a hotel room safe. But it did all end, even though it seemed for so very long that it would be end-less. And then what? It's a bit like coming out of a coma and the world has kept turning and moving without you in it. Friends have gone back to school, jobs had been reassigned, classes have been closed boyfriends are less certain about their feelings. And no one knows quite what to say. "Just say anything at all" I think, but I can't tell them that there are different types of friends in these situations, you see - the ones that call and the ones that don't. It's hard to know what to say. And a person has to look past their own discomfort to call and tell me that they just don't know what to say. So on top of everything else, there was this other layer of loss, the loss of things that should have been, I lost out on a typical college experience. living in an apartment with my friends, figuring out a major, gaining independence. Seeing the world as my oyster. I lost friends, those that couldn't deal with my ordeal. And then the years pass. The painful procedures, the weekend stints in the hospital, the endless test results and more test results finally are behind me, but not really behind me in a way that you would think. They're buried very deep, and yet at the same time, they're always just below the surface, the way that a childhood nightmare can return so easily and effortlessly. Sure, I'm not thinking about this all the time, like I once did, but it's more like this - "gosh, it seems like I just have a cold, but maybe actually it's the cancer that's come back and it's all going to start over again". Or "my leg is feeling achey and it feels pretty similar to that leg achiness 30 years ago that started all of that off". Or "I have to drive up that windy entrance to the O'Hare parking lot and I think I will vomit from the chemo again, because the hospital had that same windy parking lot entrance 30 years ago". Or "I know I need a haircut, but it always seems like such a shame to cut it since it actually grows now". The truth is, I can't remember the last day that passed that I didn't think about it. These are the ways that a cancer survivor carries their burden forever. Now it's been 30 years since my cancer ordeal. Since that time, I've been married, become a doctor, gotten divorced, remarried, had two children, and now have developed heart failure from the chemotherapy from so long ago. I find myself back in the patient role, though with a keener eye and ear for the medical system. During my medical training, I got to know a different hospital in a similarly intimate way. I knew the hallways, the paint colors, the smells, the nooks, the shortcuts, the nurses, technicians, and all of it. I slept there, cried there, had breakdowns there, and had tremendous successes there. Similar and yet, different. During all of my medical training, I always cared much more about the relationships I was forming with my patients more than their diseases and their pathology. I wanted to get to know them, communicate clearly to them. I remember vividly what perceived mistakes were made with me and I was determined not to repeat them. I gave every patient time and attention. never talked above them, asked family members if they also had questions, did their gown back up, tucked them back into bed when I was done, talked softly a bit down the hall from their room, and never walked on by. I made it through seven years of school and residency training. Then another 10 years in practice before I left medicine altogether. At the time that I left, I was fed up with the current medical system being so focused on money in efficiency and billing. I found it too difficult to provide the care I thought was needed, and deliver it in the way I wanted to within the timing and financial constraints that the system put on me. The outcome was rushed visits, not enough time to call patients back, not enough time to address all of their concerns, and all-around pretty constant frustration. Now that some time has elapsed since I left medicine, I wonder sometimes if I might have gone into it for the wrong reasons. I was a professional patient right at the time that I had to make life career decisions. I was comfortable in a hospital and felt as though I knew the medical system inside and out. I felt that if patients had a doctor that understood what they were going through and feeling during their illnesses, they would be better off. Don't get me wrong, I really did love being a doctor. I treasured the relationships I built with my patients, colleagues and staff. This podcast is my way of continuing what passion I still have for the world of health care. And I hold out hope and optimism for the wonderful things that can come out of a strong doctor-patient relationship. Thanks for listening today. To catch up on more episodes and to get new ones delivered directly to you, subscribe wherever you find your podcasts - Apple, Google, Spotify, iHeartRadio and more. If you'd like to be a guest, or have an idea for an episode, let me know at www.drpatientpodcast.com That's drpatientpodcast.com. Here's the disclaimer. Even though I am a doctor, I'm not your doctor. These stories, my comments and all discussion is purely reflection about what's working in the health care system and what isn't. Don't use any medical information that you hear in these episodes to diagnose or treat yourself. If you have a question about your health, get in touch with your doctor or local health clinic.