Hi Annie and all,

I think that's an excellent topic.

a few years ago, I had a patient with refractory leukemia, which means that there was no more treatment me or any one else in the world could give him, to get him into remission, after his second relapse.

I came to see him with our fellow, and when we walked out of his room, the fellow asked me-how could you talk to him like that? why did you tell him that there is no more effective treatment you could give him, why didn't you just give him some mild chemotherapy pills, that would keep him stable for a while, and not tell him this?

but, I knew my patient, I have been taking care of him for almost 3 years, and I knew that he is someone that wants to know the truth, and also I promised him that I am going to do every thing possible so that he can have the best quality of life.

he lived for another six months, in which he went on trips with his family, ate in the resteraunts he loved, and overall had a very reasonable quality of life. when he died his wife thanked me and said that until the very last day of his life, he kept on being the same person he always was.

I gave him mild treatment that kept his blood counts reasonably stable, blood transfusions as needed, minimized the time he spent in the hospital each time he had an infection that required IV antibiotics, and encouraged him to use what ever he felt could make him feel better, physically and emotionally.

I was also there for him and his family in the inevitable times of despair, and I constantly checked the NIH site, and with colleagues regarding any possible experimental treatment that would be available.

medicine with all its advances has its limitations, and even if a patient is given the best possible treatment, it does not gurantee remission. some patients, like myself, just don't respond to the "miracles" of modern medicine.

and yes, having to use a wheel chair is not the end of the world.
although, it does take a period of adjustment, (for me it took way too long, and a very knowledgable and experienced neurologist, who just said it to me, as if it was obvious- why don't you just use a wheelchair if it's hard for you to walk? and thanks to him- I was able to see more then one picture in a musuem for the first time in three years!)


yesterday, one of my patient's grandsons, a cute 5 year old, saw me in my wheel chair, and stared at me. his mother, who felt uneasy said to me- oh, he just doesn't like white coats. so, I said to him- that's fine, I'll make sure that next time you come I have a pink coat instead, would that be OK?

so after, we "broke the ice" ,he asked me-why, if you are a doctor, you are sitting in a chair like this? reasonable question, no doubt. doctors are supposed to be healthy, and patients are the ones that use wheelchairs.

so, we had a long discussion about wheels, and how they help us get to places that are too far for us to walk, and how for some people "too far" is different then for others.

and then he agreed to let me take care of his gradfather to make him stronger and able to play with him again.

and yes, you are completely right Annie, sometimes we tend to forget what are the tools and what are the goals.

remission is a tool for a longer life, and a better quality of life. it is not a goal in itself. and some can have a very good remission and still a pretty lousy quality of life, due to intolerable side effects, or inability to adjust to the relatively minor symptoms that they still have, or other reasons, and others, may have a pretty reasonable quality of life, even though they are not in remission.

and I am sorry to hear that you are in the "exuhsted phase". there definitely is a phase like that. I have seen it many times and have also experienced it myself.

but, what I say to myself in those times is 1. even a well-trained army needs some time to rest in between battles, 2. you can't run a marathon every day (this is something that one of my pulmonologists, who is also a marathon trainer said to me once, and I really liked it), 3. a person who was able to climb out of a dungeon is equipped to be a mountain climber.

and I alway manage to find some new hope, after the previous one was violently shattered, by one of the less sensitive, or more arrogant members of my profession, or even by the reality of life itself.

a year ago, I was quite sure that I will never be able to go back to the work that I love. and now, I am about to go to present the results of my collaborative research in a conference abroad, even though I am not in remission and not even near it.

so yes, there is always some hope out there.

alice