"Though I walk through the valley of the shadow of death, I will fear no evil..."
When you are diagnosed with Myelofibrosis you are immediately confronted with the question, "How long do I have to live?" There are various formulas for computing your statistical prognosis of dying. When I was first diagnosed they said my survival prognosis was 7.5 years. After about six months they amended that to 14.2 years.
When you are diagnosed with Myelofibrosis you are immediately confronted with the question, "How long do I have to live?" There are various formulas for computing your statistical prognosis of dying. When I was first diagnosed they said my survival prognosis was 7.5 years. After about six months they amended that to 14.2 years.
I have struggled to come up with the right term for this disease: Terminal? Fatal? I like the term the Mayo Clinic web site uses... "Life Limiting," but it doesn't sound as dangerous as it feels when you actually have it. I usually go with, "I have a fatal disease," but I feel a bit conflicted about even that. Some people are successfully cured of their Myelofibrosis through a Stem Cell Transplant (SCT).
Many people cannot have an SCT for various reasons. Many have no donor match. Many more have complicating health issues that would make them unlikely to survive the process. Even though I personally have many potential matches and I am currently in very good health, the SCT process is so dangerous and debilitating that they will not do it until a person is in imminent danger of dying from their disease.
So, even in my case, which I consider to be the best case, I have this disease trying to kill me and at this point the only cure is more dangerous to me than the disease.
Everybody knows they are going to die sooner or later. I certainly did, but it was still a shock to find out I had a disease that might well kill me far sooner than I had expected to die. I can say from experience that it is no comfort for people to tell someone with a fatal disease, "None of us knows how long we will live. I could die before you die of this disease." It is technically true, but it is very unlikely.
On the other hand, there is great comfort in knowing that whether I live on or die, God remains faithful, he will not abandon me and his promises carry me into eternity. I may be in the valley of the shadow of death, but I am not alone. My Creator is right here with me, shepherding me all the way home.
Many people cannot have an SCT for various reasons. Many have no donor match. Many more have complicating health issues that would make them unlikely to survive the process. Even though I personally have many potential matches and I am currently in very good health, the SCT process is so dangerous and debilitating that they will not do it until a person is in imminent danger of dying from their disease.
So, even in my case, which I consider to be the best case, I have this disease trying to kill me and at this point the only cure is more dangerous to me than the disease.
Everybody knows they are going to die sooner or later. I certainly did, but it was still a shock to find out I had a disease that might well kill me far sooner than I had expected to die. I can say from experience that it is no comfort for people to tell someone with a fatal disease, "None of us knows how long we will live. I could die before you die of this disease." It is technically true, but it is very unlikely.
On the other hand, there is great comfort in knowing that whether I live on or die, God remains faithful, he will not abandon me and his promises carry me into eternity. I may be in the valley of the shadow of death, but I am not alone. My Creator is right here with me, shepherding me all the way home.
(John 10:27–28 ESV) My sheep hear my voice, and I know them, and they follow me. I give them eternal life, and they will never perish, and no one will snatch them out of my hand.
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