They say that the only sure things in life are death and taxes, but in fact, taxes are not nearly so certain as death.
Even so, we have an amazing capacity for ignoring our mortality, even when we have a "life limiting" illness. When I was diagnosed, I was very aware that this disease was killing me. Every morning I wake up and remember with surprise, "I have a fatal disease that is killing me."
It is chilling to have the doctors tell you (or even worse to read on the internet) about your "median survival rate." This number is not how long you are expected to live. You might live three times that long (or only half so long). But it is a statistical reality - of the people with your level of your disease - only half will still be alive at the end of this time period. You have a 50% chance of surviving that long. Hmmmm.
So, I try not to think too much about that. I am not trying to deny my mortality, but I cannot live my life well in the present if I am constantly focused on how little time I have left. I need to have a sense of hope - a sense that there is going to be a future to aim at in my life today.
For the long term, I know that my life is going to be shortened by myelofibrosis, but for the short term I expect to live today and tomorrow without many complications. My confidence in the good outlook for the short term helps me not be in a panic over long term realities.
I am regularly confronted by those grim long term realities: when another myelofibrosis patient dies, when I see that my oncologist is surprised I have lived so long without more progression, when new studies reveal that my actual median survival rate should be lower than what I had been told, when my monthly CBC numbers slip, or when my symptoms get worse.
I am between the two: The long term picture is not so encouraging. But in the short term everything is normal. As a consequence I can enjoy the blessings of this day and carry on toward tomorrow. The country song said we should "live like you were dying," and there is truth in that. If there are things you want to accomplish, you had better accomplish them in the short term and not let the long term concerns cloud your day today.
Even so, we have an amazing capacity for ignoring our mortality, even when we have a "life limiting" illness. When I was diagnosed, I was very aware that this disease was killing me. Every morning I wake up and remember with surprise, "I have a fatal disease that is killing me."
It is chilling to have the doctors tell you (or even worse to read on the internet) about your "median survival rate." This number is not how long you are expected to live. You might live three times that long (or only half so long). But it is a statistical reality - of the people with your level of your disease - only half will still be alive at the end of this time period. You have a 50% chance of surviving that long. Hmmmm.
So, I try not to think too much about that. I am not trying to deny my mortality, but I cannot live my life well in the present if I am constantly focused on how little time I have left. I need to have a sense of hope - a sense that there is going to be a future to aim at in my life today.
For the long term, I know that my life is going to be shortened by myelofibrosis, but for the short term I expect to live today and tomorrow without many complications. My confidence in the good outlook for the short term helps me not be in a panic over long term realities.
I am regularly confronted by those grim long term realities: when another myelofibrosis patient dies, when I see that my oncologist is surprised I have lived so long without more progression, when new studies reveal that my actual median survival rate should be lower than what I had been told, when my monthly CBC numbers slip, or when my symptoms get worse.
I am between the two: The long term picture is not so encouraging. But in the short term everything is normal. As a consequence I can enjoy the blessings of this day and carry on toward tomorrow. The country song said we should "live like you were dying," and there is truth in that. If there are things you want to accomplish, you had better accomplish them in the short term and not let the long term concerns cloud your day today.
(Matthew 6:34) Therefore do not be anxious about tomorrow, for tomorrow will be anxious for itself. Sufficient for the day is its own trouble.
