He is a pulmonary man and my primary care physician, well-known and respected throughout the Harvard-teaching hospital. He is short, autocratic, and feared by many of his junior colleagues. There is even a room named after him on one of the hospital floors. In the medical profession, he is an icon among his peers.
So, you'd think that I could depend on his judgment when I went to see him because my chest felt tight; I had shortness of breath; and my temperature was 99.4 degrees. He listened intently to my lungs; checked everything else out; and said, "Well, Ellen, I see no underlying cause for your discomfort." "Are you sure?" I asked. "Because I feel so weird." "Yes, I am," he stated positively. "What you are feeling will go away by itself. Your lungs are clear and you're probably a little bit under the weather." Thanking him for his time, I left, hoping against hope that Dr. Jeffrey Segel was right and that I would feel better soon.
The next night - a Saturday in August - I still felt awful and so strange - out of it and lethargic - plus now my temperature had gone up to 100 degrees, very high for me So I called him at home. Luckily, he picked up and asked me, "Ellen, are you at the Cape?" I said yes and he replied, "Well, then, run on the beach and you'll feel better!" "But, Dr. Segel," I cried, frustrated by his response. "Why do I have a temperature of 100 degrees?" Exasperated - clearly he considered my complaint to be insignificant - he shouted, "I don't know, Ellen. Probably because it's hot out!"
Stunned that Dr. Segel refused to take me seriously, I lay on my sofa, feeling abandoned by the doctor upon whom I had depended for seven years. His attitude was especially egregious since I had just been through Stage 2 breast cancer and had finished my treatment of chemotherapy and radiation only a few months before. Luckily, I had a routine appointment with Nicole Thompson, my oncologist, on Monday, and so I tried to calm myself down until I saw her. However, my symptoms preyed on my mind and I was very frightened that there was something seriously wrong with me.
I liked Nicole,although I did not have the strong rapport with her that I had with my surgeon, Sam Katz, and radiation oncologist, Al Diamond. I got along easily with them because they were relaxed, funny and understanding. Even though they were dealing with my cancer, I never felt sick with Sam and Al. I was just "Ellen" - I was still "me" with them - and they always cheered me up.
With Nicole, there was always the feeling that I had a serious disease, that there was a chance that I might not make it. Maybe it was her attitude of trying so hard to relate to me. Whatever it was, I was not completely at home with her. There was no doubt, though, that I liked her and thought she would ultimately bring me successfully through this tough period.
I had met Nicole at a social event many years before I was diagnosed with breast cancer. Because my mother had had the disease, I knew that there was a good chance that I would contract it also. So, when I became acquainted with her that evening, I decided that if I ever got breast cancer, then she would be my doctor.
She had impressed me favorably because of her gracious manner and open smile, as well as the fact that she was an Ivy League graduate and Harvard Medical School trained. Moreover, I liked that she was still fairly young - about 45 - yet experienced enough to have handled many breast cancer cases.
Therefore, when my mammogram did indeed confirm breast cancer in 2004, I made an appointment with Nicole and was not disappointed when I went to see her for the first time. Welcoming me, she rushed up to me with open arms. Overwhelmed by my situation, I felt safe with Nicole - at least for the time being, and I thought that she would take good care of me.
Of course, my belief in her was shaken when she okayed a flu shot during my chemo. As a result, my white cells went down dangerously and I had to be hospitalized. There is no doubt that that incident left me somewhat unsure of her medical judgment. However, I was still hanging in there with Nicole, hoping that she and I were a good team.
As for her nurse practitioner, Phyllis Cotton, with whom I had to deal on a regular basis, she was one of the most depressing people that I had ever met. It seems to me that if you're dealing with cancer patients, then you have an obligation to be upbeat. Not Phyllis. She was a sad sack and I tried to avoid her whenever possible.
Plus, her clothes looked as if she had picked them up at her town dump. They were ill-fitting, wrinkled, in disarray and they gave her the appearance of a worn-out dishrag. I used to say to my friends, "I know that Phyllis has a multi-million dollar trust fund. No one really poverty-stricken would ever dress like that for work. They would want to keep up appearances. But not Phyllis. It doesn't seem to phase her that she is so hard on the eyes."
Anyhow, that Monday, I told Nicole what was bothering me. She checked me out and recommended that I have a chest x-ray just to be sure that my lungs were ok. Then she abruptly turned on her heel and left me alone in the examining room, without even saying good-bye. Stunned - I thought her behavior was as weird as Dr. Segel's a few nights before - all I could think was: "Are these doctors high on something? They're certainly acting very peculiar!"
That afternoon I was at my sister Sandy's when I got a phone call from Phyllis. In hushed tones, she told me that my x-rays had come back and that they showed that I had an extraordinary amount of fluid in my lungs. In fact, she said, she and Nicole had never seen so much fluid like that before. Therefore, it was clear to them that my cancer had metastasized to my lungs and breast.
Shaken by this news, I cried, "That sounds horrible, Phyllis." "Yes," she replied mournfully. "It's crummy." Terrified by her response, I said,"I want to speak with my oncologist. I want to speak to Nicole." "Well, Ellen, you can't," answered Phyllis. "She's gone home for the day!"
Shocked that Nicole would be incommunicato when it looked as if I would be dying soon, I demanded that she call me immediately. Moreover, it was incredible to me that Dr. Segel, the pulmonary expert, had heard nothing when he had listened to my chest. Later I learned that there were 2 1/2 litres of fluid in my lungs. His incompetency was mindboggling! And he had even had the temerity to make light of my symptoms!
Within a few minutes, Nicole was on the line, coldly telling me that Phyllis had been correct and that my prognosis was very bad. Moreover, she wanted me to come to the hospital the next morning for a thorax scan. "I don't like how you've told me this, Nicole," I said. "How could you not call me into your office?" In a clipped tone, she replied that Phyllis had been great with me and that I should be thankful for her kindness.
Angered by her arrogance and her complete lack of empathy for me, I broke the news to my family. As you would expect, they were devastated, unable to process this information. It was so overwhelming for us all to think that I would probably be dead in a very short time, especially since we had lost my mother only twenty months before.
So, to try to come to grips with this diagnosis, my sister Sandy and I walked around her neighborhood. I said good-bye to her and encouraged her to enjoy her life. And, I must tell you, during this time I never once questioned Nicole's belief in my demise. It just never occurred to me that she would reach this conclusion without the clinical evidence to back her up. Well, as you shall see, I had a lot to learn.
When we got back to Sandy's house, I called Bob, a good friend and my attorney. I told him the story and said that I had to have a will drawn up immediately. His reaction was to gasp uncontrollably for air and I thought he was having a heart attack. In a few moments, though, he was able to calm himself and he cried, "Anything to help, Ellen. Of course I'll get the will done. Don't worry about it. What else can I do for you?"
I told him that was all that I needed from him and thanked him for his friendship. Later I thought that I should have broken the news to him in a gentler way, but I was traumatized and did not know what I was doing at all.
A few minutes later, Nicole called back. This time she apologized for the way in which she had given me the information. She also told me that she wanted to see me after I had taken the thorax scan.
It is amazing how you function when you are in an unspeakable situation. I do not think that you even know what you are doing. You are certain that you are acting normally, but, in reality, everything is so surreal. You just go about your business on automatic pilot.
So, to maintain a semblance of normalcy, my family and I went out to dinner. To any observer, we looked like any ordinary group of people out for a good time, without a care in the world. I don't think we even spoke about the possibility of my death.
Only my nephew, Mark, a first-year medical student, was visibly upset and claimed that he could hardly breathe. At school he was studying cardiology and was certain that he was dying from a heart attack. Since he was a healthy twenty-two, with no history of heart problems, we all just cracked up at the absurdity of his self-diagnosis. And, because of him, we couldn't stop laughing during the whole meal.
Incredibly, I slept very well that night. I can't figure out why. Probably because I thought I was a goner and there was nothing that I could do about it. Before I went to bed, though, I called my extended family and friends. Everyone was in shock and many thought that Nicole had made a mistake. In their opinion, I just had so much energy. How could I possibly be dying?
In fact, Louise, a friend who was a hospice nurse, was completely skeptical. She said, "Ellen, it's very common to have a lot of fluid after radiation. Doesn't your oncologist know that ? You're not dying and she's a fool to jump to that conclusion. You have to get her and her nurse practitioner fired!"
Because Louise was not my doctor, I did not take her seriously. After all, how could she know more about my case than my oncologist? Well, I soon learned that she was very well-versed in cancer care and for not listening to her, I paid a very high price in pain and suffering.
At 6:00 the next morning, Sandy drove me to the scan. If you have ever been to a hospital at that time of day, you know how creepy it is . It is dark and dreary and it truly feels like death. Plus, in my case, I was just about the only outpatient there.
Sitting in the patient area I was dazed; nothing seemed real to me; and I was certain that my life was over. Soon a nurse gave me some horrible stuff to drink for an hour. This concoction gagged me immediately and I did not know how I could hold it down.
I kept taking little sips, convinced that I would throw up any second. Finally, when the hour was up, I was astonished to look into my paper cup to find that I had actually finished the crud! Would wonders never cease? Then I left my sister to get under the huge x-ray machine.
Bill, the technician, was very friendly. Because he was so kind, I gave him a blow by blow account of everything that had happened to me in the last few days, telling him that I was sure that there were a gazillion tumors in my body and that I would be dead very soon. I was such an emotional mess that I could not stop talking, my mouth going about one hundred miles an hour.
Then, in the middle of doing my x-ray, Bill said, "You know, Ellen, I don't see a thing here." Since Nicole was so sure that I had terminal cancer, as with Louise, I did not take his comment seriously. Again, to me she was the expert on my case, not Bill. Therefore, I continued to be convinced of my imminent demise.
Finally, after about forty minutes, we were done. Bill wished me luck; I shook his hand; and I thanked him for being so lovely to me. He was such a great guy - so sweet and understanding at this very low point in my life.
Sandy and I then went to Nicole's office. Phyllis was there, with her usual hangdog expression, barely greeting me when I arrived. Nicole, however, showed me some warmth by hugging me.
She astonished me, though, by asking how she could have better handled my case. Was it possible that Nicole, an oncologist for many years, really did not understand how devastating it was for me and my family to receive bad news from Phyllis over the phone? Was she that clueless?
It seems to me that every thinking and caring person knows that receiving a cancer diagnosis is one of life's most terrifying moments. Therefore, it is crucial that the physician deliver this information in person, with great gentleness and tact. So, why was Nicole unaware of this basic fact? Had she burned out and lost compassion for her patients?
Despite her extreme insensivity, I tried to take her question seriously "Well," I said. "You could have called me in to see you. After all, hearing this awful prognosis on the phone is horrifying, Nicole." "You think so?" she asked. "Because a lawyer friend of mine has advised me to be totally honest with my patients about everything."
Her response was so callous that it completely unnerved me. I agreed that she should give me important information about my health, but since I was still taking tests, wasn't it premature to talk about my imminent death - and over the phone yet? How could she conclude that I was dying when she had not even received the results of the thorax scan?
Later a friend said to me, "Pretty soon, Ellen, when doctors have bad news, they'll make those automatic recordings and autodial you. They'll tell you your time is up robotically, without any thought of how it is affecting you." Forget compassion. Forget kindness. If Nicole's brand of medicine was what the future held in store for patients, then I never wanted to see a physician again.
Phyllis then piped up, with a sob in her voice. "Oh, Ellen, I'm so worried about you!" "Well, that's your problem, Phyllis, not mine!" I retorted, totally incensed. How dare she try to undermine me in this way? As every cancer patient knows, you need support from your doctors and nurses - not negativity - and I refused to be her victin.
My sister now had a question. She asked, "Could the fluid be from anything besides cancer, Nicole?" "Oh, no," declared Nicole. "Ellen definitely has cancer. But I have to tell you, we have many new cancer drugs now that will keep her comfortable." Until when? I said to myself. For a few months before I croak?
She then took my hand in hers, which, I suppose, was her way of comforting me. However, I drew it away fast. I just could not bear for her to touch me after all the misery she had put me and my family through.
Finally, the appointment ended and Sandy and I went to the reception area to await the results of the scan. Because Nicole and Phyllis were so convinced that my cancer had metastasized, I didn't expect good news. Even though I did try to be positive, in my heart of hearts, I thought the test would confirm her diagnosis. Therefore, I felt strangely calm, certain that my destiny had been played out and that I would not be long for this world.
TO BE CONTINUED.....