One Year Later

Introduction

The past year my life has been an emotional roller coaster. With the discovery of metastatic lung disease, I officially entered the realm of the chronically ill patient. The discovery of any chronic medical problem, be it cancer (or in my case sarcoma), kidney failure, or some other disease entity deals an entirely new hand - a new set of circumstances; opportunities for success or failure are now measured in terms of survival. Here, the stakes are higher and the burdens greater.

In July, 1998 I embarked upon eight cycles of high dose chemotherapy, interrupted in September by a midline sternotomy. In this type of surgery, the lung is approached through the sternum. I tolerated all of this well, with the explicit hopes that if the tumor was not erradicated by chemotherapy, it would be removed with surgery; sarcoma did not have a chance.

Afterwards, starting in January, I underwent follow-up chest CT scans. It appeared as if a lesion was progressively "growing" in my left lung. Was it tumor? Was it scar? Without surgery there was no way to know - and the risks were too great to leave a resistant tumor behind. As I emotionally bounced from CT scan to scan, I maintained my endurance through attempts to rationalize that tumor growth would be possible, but unlikely this soon after chemotherapy. Luckily, confidence is contagious, and my oncologist had a severe case of it.

My hair grew back a silvery gray, straight and soft - pure irony - but somehow I never expect to see adriamycin on sale in beauty salons or barber shops.

Finally, the day of reckoning came. This June, I underwent another lung operation, a thoracotomy - this one through my back. The surgery was uneventful, and the results were confirming - the tumor was dead. I was at long last in remission.

This year has been not only a physical, but an emotional challenge. I have been given the unique opportunity to view my life and all of the people in it from a different perspective. Likewise, I realize that I am sometimes looked at differently as a consequence of my illness.

How is a patient looked at?

How we deal with crises is certainly visible to the outside world, and understanding how we are looked upon while we are patients is truly an eye opener. I have been keenly aware of the changes in how I interact with family, patients, colleagues and friends as a consequence of this illness. To some, I felt that I was an object of empathy. The medical literature is not exactly a secret, and from the front page of my own website, http://nephron.com, one can quickly search the literature and learn of the "terrible" prognosis of metastatic sarcoma. When we go through a turmoil like this we have our period of grief and acceptance, then an adjustment period where we regain our self confidence. We seldom realize that others that confront us for the first time later on still need time to adjust. I was amazed at how supportive and kind people really are, and how well meaning members of our civilization can be. I tried to keep up a strong spirit and attitude, and it was made easier by the kindness of my family, friends and colleagues.

To many patients, I was a fellow patient - one that came from the inner sanctum of medicine to the other side. I became a colleague; I too had a struggle. I quickly learned to see the world from a different perspective. The value of this experience has made me much wiser and more sensitive, and if I fully recover, I will count these past 12 months as the most valuable learning experience of my life.

To others I was some sort of hero - someone that was going through intensive chemotherapy, surgery, pain, hair loss and feeling miserable. I never felt like a hero, and I was not out for any cause except returning to health. So, perhaps I must settle for being an inspiration and not a hero. I surrounded myself with a sense of positiveness. Keeping positive in the face of an ordeal requires a great deal of trust in one's doctors and their staff, and a strong sense of confidence that one can get well. The fact that I remained positive and confident is the highest compliment that I can ever pay to my oncologist.

The difficult patient.

How did I interact with my caregivers? There is no doubt that to the staff and physicians that took care of me I was difficult. Difficult here means that it was a challenge to win my trust, to accept me with the same expectations that I wanted to and needed to be accepted, and above all, difficult meant that it was very hard for me to give up control. I was determined that my life would continue despite every inconvenience and disruption that was thrown in my way. How much of a compromise I had to make to become a successful patient was shocking beyond expectation. Each moment of compromise was a difficult confrontation for me. The sadness is how little insight I had into what this illness would really mean, and candidly, how little understanding we as health professionals have about what an active and energetic patient goes through with a chronic disease.

I was determined that regardless of my illness I would maintain an active and positive lifestyle. When the chest x-ray revealed metastasis, it was like a timer for the rest of my life started. I suddenly became aware that time was precious, not to be wasted, to be used to its fullest. Waiting idly to get an x-ray or have a procedure, or to see a physician just does not seem proper in this context. If I was certain that I would live to be a 100, then I would not mind, but when actuarial existence is counted in months or a few years, there is nothing that can justify delays in care. This problem is universal, and it is a challenge to the health care system to fix it. No doubt, part of my reputation for being difficult was brought about by my being outspoken regarding long wait times for clinic visits and procedures.

Saving veins.

A patient with a chronic illness must frequently go to the laboratory where blood is drawn through veins and medications are given intraveneously. If the patient and staff are not vigilant, veins will wear out, and soon, each trip to the laboratory becomes an ordeal. I was determined to avoid this problem by insisting that if and when I were to have intravenous peripheral therapy, blood be drawn at the same time, and that sites for blood draws be rotated. Phlebotomists are those people that draw blood. They have varying degrees of skill, and their skill level is inversely proportional to the life of one's veins. I became very particular about who could and could not draw blood, and became the guardian of my veins. I also exercised my arms with weights to keep the veins strong and in tact. Patients must make a special effort to keep their arm veins as healthy as possible.

Life's little problems.

I have always insisted that patients be treated with utmost respect and dignity. Now, I have justification. When one is sick, and fixated on the ordeals of therapy, illness, and his livelihood, these preoccupations make him more vulnerable, more edgy, and less capable to cope with the minor indignities that are part of daily life. Small things become hurtful. Little things become issues. If we can minimize these problems for our patients, we can make their lives so much easier. Gaining an appreciation of this through my own illness has given me a much better understanding about how to accept the differences in how patients sometimes react to life's little problems.

The doctor as a patient.

Was I difficult on my oncologist? No doubt I was. Being a patient requires handing over a certain level of control. We all relinquish control of our own lives with varying degrees of difficulty, and for me it was particularly hard. I am grateful that my physician understood this, and hope that I always maintain this insight when dealing with my patients. To handle a difficult patient, one must win him over, and in doing so, a successful physician must be intelligent, trustworthy, humane, courageous and stern. While an abundance of these qualities almost fully guarantees that there will be a great doctor-patient relationship, it does not make the patient less difficult.

It has been more difficult for me to be a patient than it has for me to be a doctor, and I hope that in the future I will be able to spend more and more time practicing, doing what I love the best. The truth is that being a patient is very, very challenging. I truly respect those who can prevail over a demanding illness like cancer, sarcoma or kidney failure. In the past year, I have gained an ever increasing amount of respect for my own patients, and the oncology patients that I met through the Internet and at MD Anderson Cancer Center. I hope that the lessons that I learned through being a patient will make me a more caring, complete and understanding physician.

©1999 Stephen Z. Fadem, MD FACP. All rights reserved. No part of this article can be reproduced without written permission of the author. International copyright laws apply.

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