by Alicia Hart
It's 11pm here in Houston, Texas. As I write this my wonderful husband Rolf, is asleep in the next room. It is in these rare moments, during which I am neither caring for my husband nor sleeping, that I write to remind you how important the career you have committed yourselves to is. It is my hope to also give you insight into the patient and caregiver perspectives-- experiences I never imagined I would have.
I got married to the man of my dreams just 5 short weeks ago. One week before the wedding, my handsome, charming, strong, compassionate, loving husband was diagnosed with Stage 3 mesothelioma, an extremely rare and aggressive form of lung cancer that enveloped almost every structure in his left chest cavity. It has been 3 long weeks since he underwent an extrapleural pneumonectomy (EPP) in which my hero, Dr. David Sugarbaker-- Yes that really is his name; removed my husband’s left lung, diaphragm, and pericardium, while infusing intraoperative heated chemotherapy in his chest and abdomen for over an hour. To put it mildly, this experience has been utterly horrifying and heart breaking.
Our tiny, newly-minted family is now face to face with the patient experience those of us in healthcare so often distance ourselves from (and with reason). It has made me question my faith, my love of medicine; it has made us both question nearly everything from our place in this world, to the meaning of it all, to our very existence. In some ways we have grown stronger, but sadly this disease has taken so much from us. Then again, it has not taken everything: my husband is still alive.
Rolf has been given a chance at survival because one man and his team have dedicated their lives to this orphan disease, a disease in which so few people have it at any given time that few, if any, corporations see the incentive for developing treatments. The TEAM of providers who ended up treating my husband made all the difference. They helped heal us in ways I never thought possible.
However, not all doctors are made equally, and perhaps I am so grateful for our treatment team in part because of the hopeless conversations we had with other providers we went through to find them.
Prior to meeting with Dr. Sugarbaker’s team, my husband and I consulted with a Kaiser surgeon in Roseville, Dr. Jeffrey (there is no) Moore (I can do for you). He was stoic, cold and the first words he spoke were, “Have any questions?”… Not a, “Hello”… not an, “I’m so sorry you have just gotten this news, but we can help you,” what we got was an impersonal, heartless, “Have any questions?” Yes, here’s one…"why are you a physician?"
Rolf and I were furious, the physician whom we were meeting for the first time got defensive, offered only palliative measures, and that was it; it was decided that he would never touch my husband. At the time we were in shock, nodding our heads, crying when he spoke of taking a biopsy of the tumors and performing a pleurodesis to help stop the nearly 3 liters of fluid surrounding his lung from re-accumulating. We left that day with a mere fraction of the hope we came in with, a horrible feeling in our hearts, tormenting imagery in our minds of what was to come, and few if any plans for the future.
Once we got away from that place, we discussed our experience, vowing not to return to a man who wouldn’t take the time to see the man behind the disease: my amazing husband Rolf Friedrich Unterleitner. As Rolf grew anxious waiting for a plan, I sent out a call over facebook to my fellow classmates for help in scouring the literature for a glimmer of hope; we got something so much more: Dr. David Sugarbaker. He is a CT surgeon who’s been treating patients with mesothelioma for over 20 years, and to top it off, he’s an author on nearly every research article looking to improve survival rates via innovation in surgical techniques.
On June 12th we were married, sailing off on a cruise to Alaska with our families. It was gorgeous and just what we needed to get our heads in the ring, to muster up the motivation and courage to fight this thing. Although it was a beautiful wedding and breathtaking honeymoon, the disease was always there with us, like a black rain cloud hovering above, threatening to soak us to the core. We returned home to California and in less than 24 hours we were off again headed this time to Houston to see what Dr. Sugarbaker had to offer.
It was amazing what they had planned for us that first day. A breakfast and informational session at the clinic with three other families who also had a loved one diagnosed with mesothelioma. At first, I thought this was some sort of sales pitch and then I knew what it was, the TEAM approach to medicine. In your medical education and career you will hear the word “team” thrown around, yet I’m not sure how many of us will either truly embrace and/or understand it until we experience it for ourselves, first hand; it’s incredibly powerful. Every member of the team was just as valuable as the next, from the social worker that spoke that morning, to the nutritionist, to the chaplain, to the NP, to the physician, each helped us heal in extraordinary ways. Yet the thing my husband and I remember most vividly from that day is Dr. Sugarbaker saying, “I’m in this for a cure.” It was not a promise for a cure nor a pretentious claim coming from somewhere on high, but an affirmation that we selected the right doctor to help Rolf. We went from Dr. Moore telling us, “Well, the options are all bad” to, “I’m in it for a cure,” complete opposite ends of the spectrum; both doctors, yet only one role model.
And in this part of our journey I found what I hope for all of us who study medicine--hope that we will invest ourselves so fully in our patients that we too will throw our hats into the ring to look for their cure no matter how much others in our field doubt us, no matter how far off that cure may be. Part of what I believe makes a great physician is someone who has the capacity to see and do what others cannot. Let us act as a team of innovators, dreamers armed with knowledge, as pioneers with the will to do the research that will ultimately save our patient’s lives.
I don't mean to sound grandiose or naive. I know the average life expectancy for stage III mesothelioma is less than a year. Yet, I am confident this will not be my husband as so many have pulled together to do the research to get us to a physician who, through innovation in the field, has had such success that 10+ year meso survivors exist!
Going through this with my husband has taught me so much about the kind of doctor I hope to become. And you bet I would trade every awe inspiring lesson for this not to have happened to us. I do not wish this upon anyone, but I do hope that the lessons I carry with me from “the other side” can be shared with all of you without you yourselves having to experience this immense pain. I have no doubt some of you have already experienced horrible loss and I am so sorry, my heart goes out to you and your families; still, let these moments guide you over the next four years and for the rest of your career, let them remind you of what it’s like to be a family member of a loved one experiencing illness.
I shall leave you with one last story from our time spent in the hospital…a story that touched our souls:
For days following Rolf’s surgery he was NPO, not allowed anything to eat or drink, and was experiencing extreme dryness so much so that he developed sores in his mouth. Finally I asked for a consult with the physician on call to see what could be done about it. After explaining my concerns, the physician--I never did find out his name, said he was going to place an order for Lifesavers to help alleviate Rolf’s discomfort. I asked the nurse when we would be able to get them and she replied, “He can write the orders, but the hospital doesn’t stock Lifesavers..you might want to go down and get some at the gift shop.” No problem, off I went. When I got down there, I could not believe what I saw, his doctor in line purchasing Lifesavers for him! I’ll never forget how my heart melted that day...how his compassion touched our family at a time when we needed it most, how his selflessness reignited my desire to serve others in this way.