I have wanted to get back to writing in my blog, but the recent developments in my life have hindered me. In the almost two months since my diagnosis with myelofibrosis, I have not had a day when I don't think, "I have myelofibrosis and it is killing me."
I want to write in my blog, but I don't want it to be a downer for everybody (or at least my six followers). On the other hand, my diagnosis and prognosis with myelofibrosis is one of the more significant things that is going on in my life right now. So, I've decided to write about it. Hopefully it won't be too morbid for you.
The fact is, that right now I have a median life expectancy of seven years. That is not really too bad. I might be an outlier on the positive side of seven and live ten more years. That would put me in my mid-sixties and lots of people die in their mid-sixties. (Although I would have liked to have gotten SOMETHING out of my social security that I have paid 15% into every year.)
What is different is that I can see the train coming that is going to hit me. Right now I feel great and it seems bizarre that I have this very serious disease. How can I be dying of this when I feel so good? It just doesn't make any sense.
But I have it - sure enough. The JAK2 mutation. The enlarged spleen. The dry taps when they tried the bone marrow biopsy. The slightly elevated temperature. And the high white blood count and lower red blood and platelet counts. This is what I've got, so the myelofibrosis train is coming to run over me with increasing pain, fatigue, anemia, bruising and bleeding and compromised immune system.
So you would think that with this kind of time frame I might be able to get out of the way of the train?
Well, maybe! The one problem is that right now there is no curative treatment except a bone marrow transplant and that is very risky itself. Nothing I can take right now is going to stop the train that is coming and if I go for the transplant I might be dodging the first train and getting hit by another. It is too early to do that. On the other hand, they might develop some new treatments that are effective in controlling myelofibrosis and extending life - but they had better hurry if they are going to help me. I can try to get into clinical trials, but these are not proven to help and might actually hurt - for all I know.
So, instead, I have to kind of sit here on the railroad tracks and ponder the situation.
Pondering leads me to the following points.
May Jesus Christ be praised! He alone is worthy.
I want to write in my blog, but I don't want it to be a downer for everybody (or at least my six followers). On the other hand, my diagnosis and prognosis with myelofibrosis is one of the more significant things that is going on in my life right now. So, I've decided to write about it. Hopefully it won't be too morbid for you.
The fact is, that right now I have a median life expectancy of seven years. That is not really too bad. I might be an outlier on the positive side of seven and live ten more years. That would put me in my mid-sixties and lots of people die in their mid-sixties. (Although I would have liked to have gotten SOMETHING out of my social security that I have paid 15% into every year.)
What is different is that I can see the train coming that is going to hit me. Right now I feel great and it seems bizarre that I have this very serious disease. How can I be dying of this when I feel so good? It just doesn't make any sense.
But I have it - sure enough. The JAK2 mutation. The enlarged spleen. The dry taps when they tried the bone marrow biopsy. The slightly elevated temperature. And the high white blood count and lower red blood and platelet counts. This is what I've got, so the myelofibrosis train is coming to run over me with increasing pain, fatigue, anemia, bruising and bleeding and compromised immune system.
So you would think that with this kind of time frame I might be able to get out of the way of the train?
Well, maybe! The one problem is that right now there is no curative treatment except a bone marrow transplant and that is very risky itself. Nothing I can take right now is going to stop the train that is coming and if I go for the transplant I might be dodging the first train and getting hit by another. It is too early to do that. On the other hand, they might develop some new treatments that are effective in controlling myelofibrosis and extending life - but they had better hurry if they are going to help me. I can try to get into clinical trials, but these are not proven to help and might actually hurt - for all I know.
So, instead, I have to kind of sit here on the railroad tracks and ponder the situation.
Pondering leads me to the following points.
- God has truly blessed me throughout my life - and this is no exception. It is a blessing!
- All things work together for good to those who love God - and this will too. It will grow me.
- Nothing can separate us from the love of God in Christ - not even this. God is with me & is helping me.
- Jesus Christ is victorious over sin and death - I have nothing to fear in life or death. I am his.
- Jesus is the Resurrection and the Life - the believer doesn't really die. I will be with Christ.
- God's strength is made perfect in weakness. As the disease (or treatment) progresses I will be weaker, so God will be increasingly glorified in me. And that is what I want more than anything.
- God does not allow us to be tested beyond our ability to endure - he will shepherd me through this "valley of the shadow of death" and make it a picnic.
- The "faith hall of fame" in Hebrews eleven is people who faced difficult trials by faith in God. The opportunity to face a more difficult trial is actually a privilege entrusted to me by God. I just want to be faithful through it all.
May Jesus Christ be praised! He alone is worthy.
Well said...sniff, sniff.
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