Wednesday, June 30, 2010


So, there I was, feeling completely healthy, but sentenced to a week-end on the heart floor of the hospital where my mother had died. Have you ever been in a hospital over the week-end? It is truly eerie. Few people are there; the silence is deafening; and you believe that you are probably one of the few people left on the face of the earth.

Even the medical personnel are not around - only the skeleton crew is available and even they seem so quiet. So, you do feel as if you have been totally forgotten and that you will never again be living your life as you have known it. Everything and everyone have passed you by and you are a person completely and utterly alone.

Because I had so much energy and had nothing to do, I walked the length of the small corridor so many times that I got to know just about everyone on the floor. And every time that I passed my mother's room, I would flinch and look away. It just hurt so much to see it.

My family did come to see me and they took a turn with me around the floor. When we reached my mother's death room, though, they froze and averted their eyes. They were totally freaked - and they hadn't even slept in her bed! I felt like telling my doctors that if my heart was still beating after all the trauma that I had experienced, then I was certainly A1-OK.

One decision that I made that week-end was that Nicole and I would never be doctor and patient again. It was incredible to me, moreover, that I, in the hospital for a possible heart problem, had to deal with the stressful issue of firing my doctor. I was so nervous about it that my heart would not stop pounding and I know that my blood pressure sky-rocketed. If it is true that extreme tension can kill, then I was certain that this situation would definitely do me in.

On Monday, Nicole, without her white coat, came in early to see me. I thought that she must have been in a great rush to get to my room. Otherwise, she would have been wearing it because I sensed that to her that jacket gave her enormous stature.

She sat on my bed, bestowed her beatific smile on me, and asked how I felt. With my pressure pulsing away and my heart beating wildly, I responded in as controlled a voice as I could summon. "Please leave, Nicole. You are no longer my doctor." Stopped dead in her tracks, with her smile wiped off her face, she asked, "Ellen, did something else happen this week-end?"

Nonplussed, I looked at this woman. Was she from another planet? Did she really not know that she had tortured me with her so-called health care? Gathering all my strength - and I do not know where it came from because I was a total wreck - I answered, "Last week was enough, Nicole. Please leave." Immediately, she got up from the bed and fled the room . Emotionally spent, I just wanted to sob and sob.

A few minutes later, my sister called. Apparently, after our conversation, Nicole had phoned her. According to Sandy, Nicole wanted to know how she could mend our relationship, that she respected me so much. Could she and I meet for coffee? It was inconceivable to me that Nicole believed that a simple get-together could make up to me for the mental anguish that she had caused me. In any event, I never saw her or spoke to her again.

As the morning wore on, I had a few visitors. Sam, my surgeon, a warm and caring man, stopped by and spent time with me. Because he was so responsive whenever I had questions about my cancer treatment, I considered him a friend. Therefore, I told him about Nicole and that I had dismissed her. His cheerful presence calmed me down and then he told me not to worry, that he would email his friend, Rand Levine, a noted oncologist, to take over my case.

After Sam left, Dan Lewis, the President of the hospital, sauntered in. Dan and I had known each other socially for a long time and I believed that we had a good relationship. He had checked on my mother when she had been sick in this hospital and he had been attentive to me, too, when I had been a patient here on other cancer-related issues.

Dan had an informal manner, a hail-fellow-well-met attitude and I thought that he wanted the best for his hospital and its patients. I was sure that once he heard what had befallen me that he would take the proper steps to prevent its happening again. Therefore, I proceeded to tell him my story, ending by saying, "Dan, what I have gone through is horrible. You have to do something about it."

He nodded agreeably, but it seemed to me that what I had told him did not register at all. Only when I mentioned that Nicole had called my sister did he come alive. "My God," he exclaimed. "She broke the HIPAA Law," a fact which I had not known until he revealed it to me. (Health Insurance Portability Act of 1996, which requires that a patient give his or her physician permission to speak to family and/or friends.)

His lack of concern for me shocked me. Then it became clear that because Nicole had broken the HIPAA Law, he was afraid that I would sue the hospital and that, in his eyes, I was now no longer simply a patient, but a potential adversary. However, I could not dwell on this turn of events because soon my nightmare began again.

This new drama started when Frank came to see me with his team of cardiologists. He looked very solemn when he entered my room and I immediately thought it was curtains for me. "Am I going to make it, Frank?" I asked. Surprised by my question, he answered, "Of course you are, Ellen." Relieved, it then occurred to me that he probably had been so stern because of another patient.

Then he looked at my chart and said, "It says here that you are very anxious." Laughing hysterically, I replied, "I guess I am very anxious, Frank. Nothing like sleeping in your mother's deathbed or being told you're going to die to make you really nervous!" He nodded and made some notes. Then his team checked me out and told me that they believed that they would have to do surgery to remove the fluid around my heart. This operation would involve my remaining in the ICU for a few days while my fluid drained.

It sounded horrible to me and I was certain that it would finish me off. However, before they could do this operation, they told me that they had to insert a camera down my throat, which would take a picture of my heart. In this way, they could see clearly what was going on down there.

I looked at these doctors in utter amazement. They were talking as if there was nothing to this procedure. Easy for them to say since it was not their body lying there on the table. Moreover, after everything that had occurred in the past week, I had little confidence that everything would go smoothly. Clearly, Murphy's Law was working overtime on me. Therefore, they had a slim chance to none that I would agree to their proposal.

Instead, I asked, "Why can't we do another echo? It's much easier and wouldn't it show if there is still fluid there?" They looked at me in wonderment. What a brilliant idea, they seemed to be thinking and immediately they accepted my suggestion! My God, I thought. It certainly does not take an MD degree to use your common sense. Why was it so hard for these Harvard physicians to use theirs?

In awhile the technician came to my room to do the echo. After it was done, the doctors, though, were still certain that I needed surgery. Thus, they put me on a gurney and had me taken to the waiting area of the operating room.

Have you ever had an operation? Well, then, you know that the preparation makes you think of yourself as a trussed up turkey. In my case, they gave me a johnny, inserted a catheter into my body, and left me lying there, hearing all kinds of commotion from the doctors, the nurses and the patients. Not only did I feel like a turkey, but also a sacrificial lamb being led to the slaughter, with absolutely no control over what was about to happen to me.

And I could not believe that I was in this situation. All I could think was, "Where is my life? Where did it go?" for in the short space of a week, I was having one procedure after another. At this point, it was impossible for me to believe that I would ever return to my normal, healthy existence.

Suddenly, as I was lying in a dreamlike state, trying to imagine myself in Aruba, with loads of rum in me, Joe, the young resident cardiologist on Frank's team, came running to me, out of breath and talking very, very fast. "Ellen, you don't need surgery. The echo shows that a lot of the fluid dried up by itself. You're fine!"

Totally freaked out by this news - I could not believe that I had been put through this ordeal for nothing - I shouted at him, "Then get me the hell out of here and fast! And I want a vodka and orange juice immediately!" He just stared at me, amazed by my outburst. "My God!" he exclaimed. "You're awfully emotional! I can't get you any liquor, but I can get you a valium." "Forget the valium, Joe," I cried. "And you'd be emotional, too, if you were me."

He then tried to soothe me by telling me that I would be back in my room very soon. However, since the cardiologists were still conferring on my case, I had to remain and could not even unplug myself from the intrusive catheter.

During this time, they transferred me to the hallway, where I lay uncomfortably on the gurney, and I had visitors. My sister came to see me, as well as Al, my radiation oncologist, and Dr. Segel, just off the plane from Brazil. No one said very much because my case was very disconcerting to them, to say the least.



In awhile Nicole, ashen-faced, called us into her office. "Oh, my God," I thought. "I have even less time than I thought." Very grim, she faced my sister and me and announced, "There's nothing there, Ellen. Nothing at all."

At first Sandy and I were sure that we had heard her incorrectly because she was so unhappy. Confused, we looked at each other and cried in unison, "But that's good, isn't it, Nicole?" And we grabbed her, hugged her and couldn't stop laughing hysterically.

Incredibly, Nicole could not share our joy. Pulling away, she said,"Well, I always take the negative approach. You have more tests to take - your fluid has to be taken out and sent to the lab - and if it's ok, I shall be pleasantly surprised."

What was so mind-boggling was Nicole's misery. She looked devastated. Thus, the most horrible thought crossed my mind - and I could not believe that I was thinking this way:

Nicole's mistake had completely crushed her. Until now she had viewed herself as a superior being because she was a Harvard doctor. Now she saw that she was not so perfect and she could not cope with it. It would have been better for her if she had been right, even though that would have meant a death sentence for me. But then, I reasoned, no physicians would feel that way. Or would they?

Moreover, Nicole had categorically stated that my fluid could only be from cancer. Later when I talked to more doctors, I found out that fluid can be the result of many things. As my friend, Louise, had known, in my case, it was probably from my recently completed radiation.

Most egregious, though, I learned later that a cancer diagnosis can never be based on a chest x-ray. It can only be detected through a biopsy, which Nicole had never done on me. So, why had she jumped to the conclusion that I had metastasized cancer? Suddenly, I remembered that when Nicole and I were discussing my condition on the phone, I had asked her if she had seen a mass in the x-ray. "Oh, no, Ellen," she had replied. "But I assume one is there."

Now, when I could think clearly, her answer totally dumbfounded me. How could an experienced oncologist, dealing with cancer on a daily basis, reach a conclusion based only on supposition and not on clinical fact? Was Nicole incompetent? Had she lost her mind? What was also shocking was that she never apologized for her egregious behavior. Never once did she tell me that she was sorry for scaring me, my family and friends.

Dismayed by her behavior, my sister and I went to have my fluid removed. Only a little could be taken out on an outpatient basis; the rest would be drawn later in the hospital. On the way, Sandy turned to me and said,"She is really weird, Ellen." Of course, I was in complete agreement.

Brenda, the doctor who would remove the fluid, was upbeat, calm and confident, the opposite of Nicole. Once she had completed the procedure, she told me that I did not have an excessive amount in my body. She said, "Actually, I see this all the time. And I don't think you have cancer, Ellen. Your fluid is clear and cancer fluid is murky."

This information stunned me. If my fluid level was not extraordinary, then why were Nicole and Phyllis so certain that I was going to die? I tried to understand their reasoning, but I was totally exhausted and I just wanted to go home and crawl into bed.

When I called my relatives and friends, they all breathed a sigh of relief. "And you're going to get rid of that terrible Nicole, aren't you, Ellen?" asked Sylvia, my cousin. Bob, my lawyer, had a few thoughts, too. "You've got to sue, Ellen. What she did to you is totally inexcusable." Still a nervous wreck, though, I did not know what I was going to do about Nicole - and, unbeknownst to me, there were more terrible things to come.

On Friday, I went back to the hospital alone to have an echocardiogram. Since Nicole had recommended it, I did not want to take the test. However, to be cautious, I begrudgingly kept the appointment.

While there I ran into Frank, the kind and caring cardiologist who had treated my mother until her death. I had a special fondness for him because of the lovely way in which he had looked after her, as well as his concern for us, her family.

"Why are you here, Ellen?" he asked. "You look too terrific to be taking an echo." I told him my Nicole story and, not surprised, he replied, "Well, it's common knowledge that she is spread too thin. I know your test will be fine because you don't seem to be under any stress at all." A lot that he knew!!!

After the echo, I returned to my sister's house and got ready to go back to the Cape. Ever since the fluid had been removed, my good health had returned and I only wanted to get back to our cottage on our beautiful lake, a place that was nirvana to me. Just to be by myself and not have to think about my health or to have to see any doctors! Who could ask for anything more?

It was not to be, however. As I was saying good-bye to my family, I heard from Nicole via her cell phone,which kept going in and out of service. Didn't she realize that not only was it unnerving for me to receive an unexpected phone call from her, but that, because of poor reception, it was disturbing to hear only bits and pieces of what she was saying?

However, I quickly put those thoughts out of my mind because I remembered that I was dealing with Nicole, a physician who lived in an Alternate Universe. She was completely wrapped up in herself, in her own world, with absolutely no empathy for anyone else, including her patients.

Talking very fast, very loud and completely out of control, she cried,"How do you feel? I want you in the ER immediately! You have a lot of fluid around your heart and that is very dangerous. Anything could happen to you, anything at all!"

Disregarding her instructions - how could I possibly take her seriously after the events of the past week? - I tried to calm her down. Later, when I thought back to this phone call, it amazed me that it was I, the patient, who had to soothe Nicole, my doctor, and not the other way around.
Then I told her that I was leaving for the Cape immediately; that I felt fine; and nothing could stop me. Concluding our conversation, I said, "Let's forget about my heart for a minute, Nicole. Do I have cancer or not?" "Oh, no, Ellen," she cavalierly replied. "Your fluid was perfect. You don't have cancer at all!"

Her insensitivity flabbergasted me! How could she be so casual about these tests when it was she herself who had told me that I was going to die? Was she so dead emotionally that she could not relate to the anxiety that she had caused me? That she really did not comprehend that I needed to know the results as soon as possible? Disgusted, my first impulse was to hang up on her and to ignore her warning about my heart.

Sandy, however, had been listening and she insisted that I go to the ER. "What if Nicole is right this time?" she asked. After much discussion, I called Frank for his input because I had great trust in his judgment. Concerned, he told me that I should listen to Nicole; that he was not on-call that week-end; and he was instructing his colleague, Joe Sears, to monitor my condition. Thus, my sister and I drove quickly to the hospital, convinced that we were living in the Medical Twilight Zone and that this nightmare would never end.

As you would expect, the ER was teeming, frantic with the comings and goings of patients on gurneys, EMT's, nurses, doctors, and all of us sitting for what seemed like hours in the reception area. Even though Frank had called ahead to let the ER know that I would be arriving soon, I still had to wait a long time, a situation which was beginning to panic me. After all that had happened during the week, I was starting to believe that Nicole was correct in believing that my days were numbered.

Finally, a kind nurse led me to a room and I did the usual patient routine. I undressed, put on the johnny and lay on the gurney, terrified of what was coming next. After checking me out, the doctors agreed that I should have another echo. Even though I was feeling fine, this test confirmed what Nicole had told me - that, indeed, there was a great deal of fluid around my heart. Therefore, Frank's colleague recommended that I stay in the hospital over the week-end so that the doctors could watch me.

There was one glitch, however - would they never end? I was told that because there were very few available beds,I would have to go to Franklin 3, a cardiology floor. "Oh, no," I cried. "My mother died on that floor twenty months ago! It would totally freak me out to spend any time there!" "Well," they said. "If you don't go to that floor, you'll have to stay in the ER all week-end!"

What a choice, I thought to myself. After having planned to be at my heavenly cottage at the Cape for the next few days, I was now reduced to the options of either lying on a gurney in a hallway of the ER, where I would see all kinds of disasters for a whole week-end, or I could go to the very floor that held painful memories of Mom's death.

In trying to decide what to do, I thought about how terrible it was for me and my family when my mother had finally left us. I could not believe that it had happened and I kept talking to her as if she were still there. Finally, Sandy had to make me understand that Mom was dead and it was pointless for me to carry on a conversation with her.

And I remembered how my whole family and I congregated in a meeting room with the doctors who had cared for her, as if our discussion was about everyday events. The shock had been overwhelming and I had vowed that I would never enter that building again, never mind the floor on which she had died.

Nevertheless, I decided to go to Franklin 3 because it seemed like the lesser of two evils. It was unbelievable, though, that I was being put in this position because Franklin 3 was not like a regular hospital floor, which, typically, is very long, seeming to go on forever. No, Franklin 3 was so short that no matter where I slept, I would be very close to where my Mom's life had ended.

Pretty soon some very nice guy came to wheel me up, and, lo and behold, not only was I on Franklin 3, but they had also taken me to the same room and bed in which my mother had died! It was incredible! It was too much to take in! Was this really happening to me?

Later my friends asked me why I did not object and demand to be taken to another room and bed. To tell you the truth, by this time I was so traumatized that I could not open my mouth even if I tried, which is saying a lot, because, normally, I am a very gregarious person.

Moreover, I was certain that my end had come. Why else was I being put into my late mother's bed, her last stop before her grave? So, the attendants left me and I called my sister and her family. Everyone was speechless. They could not believe what was taking place. It felt as if we were in some weird Halloween movie and the ghouls were circling around.

Let me tell you. Getting into that bed took a lot of doing. I tried to hold myself together by believing that my mother was putting her arms around me and taking me to the beyond. I never thought I would wake up and I was ready to see her and my late father, gone for twenty-eight years. I figured that we were going to have a happy family reunion, so I closed my eyes, pretended that my Mom was holding me, and I prepared for entry into my final destination.

Surprise, surprise, though! The next morning I actually opened my eyes and was stunned to find that I was still in the land of the living. In fact, I was feeling so well that I was ready to go home. It seemed ridiculous to me to stay in the hospital for a whole week-end when I was the exact opposite of a sick or a dead person. To the contrary. I was ready to take on the world. However, I decided to stick out the week-end because Frank's colleague had prescribed it. In my opinion, Frank was a great physician and I knew his associate was of the same caliber.

Soon the nurses stopped by and were incredulous to see me in this particular room and bed. They knew me from when I was caring for my mother during her last illness and they remembered my pain when she had died. They could not understand why I had been put there, "especially," said Sherry, "since we have another available room down the hall!"

The fact that I could have slept somewhere else - and not in my mother's deathbed - did not phase me at all. In my view, ever since Dr. Segel and Nicole had misdiagnosed me, I had been in the Medical Twilight Zone, where only glitches and weirdnesses were the norm. So, why should I be surprised at this mistake? It seemed like the natural order of things for me now.

The nurses moved me very quickly and I started to feel a little happier. Frank's colleague came to see me, too. Dr. Sears was a friendly guy and very easygoing. He checked my chart, looked me over, and said, "Well, Ellen, you certainly are a mystery case because you look perfectly fine to me. Your color is good. Your energy is fine. I can't imagine why you are here. So, if you have time, come to see me when this is over. I'd like to have a second look and figure out what is going on with you."


Tuesday, June 29, 2010


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.



This blog is about one of my incredible, off-the-wall medical experiences. I am writing it to show you that not only is it important to be vigilant with your doctors, but it is necessary to be assertive with them as well.

There are many more of these crazy stories in my new book, ELLEN IN MEDICALAND:TRUE STORIES OF HOW I FELL DOWN MEDICINE'S BLACK HOLE AND STILL LIVED AFTER ALL. It should be on Kindle by early 2011.

Ellen In Medicaland exposes the terrible things that can happen to a patient in a hospital and it is a warning to everyone: you are vulnerable in Medicaland. However, what happened to me is so bizarre that I don't think that I could have done anything to prevent these situations from taking place.

One reason for our vulnerability is that many of us are too quick to give our trust to our doctors and, in many cases, this trust is misplaced. Just because a person wears a white coat or went to an Ivy League college, it is a mistake to automatically assume that he or she is competent. In fact, many of these highly-educated doctors are unable to relate to their patients and should not be in medicine at all.

By the same token, there are many wonderful doctors, but it takes time and discernment to find them. In my view, even when your doctor is great, you should always partner with him or her and give your input in your health care. It is your body and only you live with it, not your doctor.

The incident on this blog astounded me when it occurred because it involved highly-trained Harvard doctors at a Harvard-teaching hospital in Boston. Most people think that they are safe when Harvard doctors are treating them at a Harvard institution. Unfortunately, as you will see, this belief is sometimes true and sometimes false.

In my case, the incompetency of my physicians was mind-boggling. How could so many of them completely botch my care? you may wonder after reading this story. I do not understand it either, but fail me they did and I hope that you never have to deal with medical situations so unnerving.

ELLEN IN MEDICALAND, the book, also talks about what it is like to be a caregiver because for seven years I took care of my mother as she declined. It was a very demanding experience, and it took a great toll out of me.

Nevertheless, I am glad that I was the one who was with her in her last days. We had always been close, but we got even closer and I learned so much from her during the final phase of her life.

What has astonished me in sharing my medical stories is that so many people are hesitant to divulge their own. Only after I probe them for their anecdotes do they reveal what has happened to them, almost sub rosa. Sometimes they even withhold the offending doctor's name.

In one instance, a woman spoke to me in whispers, making me feel as if we were in the Gulag. To me this fear is incomprehensible, as well as sad, because, in fact, the doctors being discussed are rude, arrogant, negligent or worse, and no one should be subjected to their toxic behavior.

If you do not have a good doctor-patient relationship, which includes good communication and respect, move on. Find someone to whom you can relate comfortably, someone who cares for you competently, kindly and sympathetically.

This blog is dedicated to those doctors who always put their patients first - Abe, Clint, Stafford, my cousin Barbara, my late Uncle Ben, the late Hal, Joel and Phil - who always cared and whose humanity remained intact in our very fractured health system. Many in this group are retired or no longer with us, but they were the best of the best.

In the past five years I have lost good doctors. It is too stressful for them in the Boston area and, therefore, they have moved to places where it is easier to practice, or they have left medicine forever. They have been a real loss to me because a good doctor is like a member of your family and he or she can never be replaced.

I have fired a few. When it was impossible to get good care from them, I never went back. One or two called me to ask why I had not set up an appointment. I said that I was going to someone else. These physicians asked no further questions. I guess they did not want to hear the reasons for my making the change.

The situations described on this blog are truly unbelievable - it still is inconceivable to me that I went through all that I write about. If I read about these incidents in a book of fiction, I would say to you that they could never happen in real life.

I have changed the names to protect the guilty and I am sure you will get a good laugh even though the humor is very black. Our health system is like the Twilight Zone and the insanity of it all is surely a source of comedy. Most importantly, though, I hope my story will give you a window into the medical world so that you will be able to handle it when you find yourselves there.

Even after all that I have suffered, I still believe that it is possible to get good health care. You must educate yourself, though, and you must be realistic about what you can expect from your doctors. It is not an easy process and it can become frustrating - especially when you are looking everywhere for a physician whom you like and that person does not seem to exist, but it can be done.

Just keep asking questions; be well-informed about your situation; and make certain that what your doctor is telling you makes sense to you. Only then will you have a good chance of navigating our health system successfully.