Call me stubborn but if I had listened to my onc when she told me that there was nothing more she could do, I would not be writing this now. The article below discusses this idea. David
"Over the years, readers have shared with me countless examples of times when doctors had given up hope, but patients recovered anyway. Medicine is as much an art as a science, and doctors aren’t infallible. Still, I’m often surprised how often doctors are willing to put forth the worst-case scenario without offering the possibility of a best-case scenario.
I spoke with Dr. Jerome Groopman, the noted Harvard physician whose books “How Doctors Think†and “The Anatomy of Hope†are especially relevant to this topic. Dr. Groopman says he is troubled by stories like the one involving my friend, but he’s not entirely surprised, either. In the case of stroke, for instance, treatments are inexact and recovery largely depends on the body’s own ability to heal itself. “When the physician feels that he or she really can’t do anything active, they tend to take the most negative scenario as the likely one,'’ said Dr. Groopman."
Even my husband's surgeon, whom we like a lot, has been painting terrible worst case scenarios for the past eight months. He has warned us that my husband's spine will not hold, that they will have to do a very dangerous surgery involving opening the chest and moving organs around, etc. None of what he warned us of has happened (even though my husband has just had his third surgery to deal with infection - this time they removed some infected bone so we hope they got the source of the problem for a change).
I think doctors paint the worse case scenario to protect themselves. Then they can't say they didn't warn us. While we were waiting for my husband's initial surgery last February, the surgeon warned us that it might be a metastasis from a primary cancer elsewhere. HE said that again after surgery, when a tumor was found. HE kept on saying that till the biopsy showed myeloma. All indications early on were for myeloma, but he kept telling us about metastasis from other cancers until it was definitely ruled out. Ok, if it had been metastasis we would have been warned, but it sure put us through a lot of unnecesssary grief. Not that MM is a happy diagnosis, but at least there are more options than in metastasis from primary cancer elsewhere.
 Meanwhile, our oncologist seems to lose no opportunity to remind us that this is an incurable disease and that remission will not last. How kind of him. Perhaps he thinks we are fools?
 For once, I would like a doctor to say, here are the facts of your disease, but we repeatedly see patients who beat the statistics, so just forget about those, and focus on your own healing. And here is what you can do to help yourself.
Meanwhile, today I am thinking, for a change, about how lucky MMers are. I know that sounds odd, but here's why. I just found out today that a friend of mine has died at the age of 41 of a heart attack. I saw him this past summer when he passed through Cyprus; he had plans to spend a good amount of time in Lebanon, and we talked about meeting there. My husband has never met this friend and I was looking forward to introducing the two of them. But today I learned that my friend, who was full of life and hope and plans and joy, has died. Suddenly. Without any warning of any kind at all. When I think of my husband with his MM, I remember that at least he has options. He can fight back. We can strategize a game plan and gather our forces and battle the disease. With a heart attack, you can do none of that. It happens, and it's over. That's how it was for my friend, a kind man with a radiant soul whose journey on this planet should not have ended so soon.
 I never thought I would feel grateful for myeloma. Never in a million years. But tonight I am considering that at least it gives us a choice.Â
Lisa, I completely agree with you. Doctors have to cover their...you know whats, but it would be really nice to hear words like the ones you wrote: "here are the facts of your disease, blablabla, focus on your own healing." I must say that you got a really crappy deal with your oncologist, who seems like the worst of the worst. Too bad he is your only choice. I was much MUCH luckier. Both the hematologists that I have had here in Italy have been very open-minded, although I had to PROVE to my first one that curcumin worked (and I didn't know it would, when I first started out, I mean).
About your friend, I am very sorry to read about his death. I am sending you a big hug! I wanted to mention that I have had reactions similar to yours, which is why I have never thought the words "why me?" that seem to be common with people who are diagnosed with cancer. I am not sure I feel "grateful" for myeloma (I could have done without it), but I certainly don't think it's the worst thing that could have happened to me. Of course, I am in an early stage, a privileged stage, and I am stable, in no pain except back pain from childhood scoliosis, so it's easy for me to say that (I know). But of all the things that are out there (people suffering from natural or man-made disasters, dying of hunger, and so on), myeloma doesn't seem like number one BAD thing to me. I always try to see the glass half full. And actually, these days, my glass is more than half full. You hang in there.
Margaret. Florence, Italy. Blog URL: http://margaret.healthblo...
My ilness has forced me to slow down, never multi-task, pay attention and do nothing with style and without guilt. My body talks now and I listen. I have lost superficial friends and drawn closer to the real friends. It is a rich life.
I agree. Like you, I have "purged" my life of negative superficial friends, and am left with those who would do anything for me and I for them. Life is much better this way. Rich, as you say, wisely.
Margaret. Florence, Italy. Blog URL: http://margaret.healthblo...
All-
I hope everyone enjoyed their thanksgiving holiday- at least those of us in the US. Â
This may sound abit sappy but when I read Lisa's post (exerpt below) while having just been thinking about what we are thankful for, I thought that i would sort of combine Lisa's sentiment with some thanksgiving thoughts.
Once the pbsct was behind me (by about 2000) I decided that I liked my life more after the cancer than before. Not only was I able to manage the disease, as Lisa says "we have a choice," I decided that I had made choices about priorities, family instead of my career, that enhanced my quality of life. So yes, Lisa, I agree, we have a choice. DavidÂ
Lisa-
"Meanwhile, today I am thinking, for a change, about how lucky MMers are. I know
that sounds odd, but here's why. I just found out today that a friend of mine
has died at the age of 41 of a heart attack. I saw him this past summer when he
passed through Cyprus; he had plans to spend a good amount of time in Lebanon,
and we talked about meeting there. My husband has never met this friend and I
was looking forward to introducing the two of them. But today I learned that my
friend, who was full of life and hope and plans and joy, has died. Suddenly.
Without any warning of any kind at all. When I think of my husband with his MM,
I remember that at least he has options. He can fight back. We can strategize a
game plan and gather our forces and battle the disease. With a heart attack,
you can do none of that. It happens, and it's over. That's how it was for my
friend, a kind man with a radiant soul whose journey on this planet should not
have ended so soon.
I never thought I would feel grateful for myeloma. Never in a million years.
But tonight I am considering that at least it gives us a choice."
Â
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