Blessings In Myelofibrosis

Happy Leukemic Process Day!

Three years ago today, on another beautiful afternoon like this one, I was stunned when a doctor called and said he wanted me to go to the hospital right away. 

I had gone to my primary care doctor that morning because of a lump on my left side that turned out to be a very large spleen.  He had said, “You are so healthy that I’m sure it must be a benign process.”  But in that afternoon phone call he said, “Your white blood cell count is over 40,000 and we can tell that it is a leukemic process.”

That was the beginning of my myelofibrosis journey – bone marrow biopsies, CT scans, ultrasound scans, needle sticks, complete blood counts, HLA matching, genomic testing, mutation panels and pathology reports.  There have been various prognoses of how long I might live with myelofibrosis.  I have struggled with various symptoms and I have responded well to an expensive med that relieves those symptoms.  Three years into it, I am in a good place.  I feel well, I am able to work full time, I am active and still learning new things.

I have been blessed – not in spite of myelofibrosis – but through myelofibrosis.  I’ve met many people I would never have known except for myelofibrosis.  Many of my new friends have helped me through rough times and some have let me help them through rough times.

Above all, having this fatal disease has helped me to appreciate life more than I ever did before.  I have learned to savor the present and to not let an unknown future spoil even a moment.  Myelofibrosis has been a finishing school for my maturation process and I praise God for it.

“Count it all joy, my brothers, when you meet trials of various kinds, for you know that the testing of your faith produces steadfastness. And let steadfastness have its full effect, that you may be complete and whole, lacking nothing.”  (James 1:2-4)

The Valley of The Shadow of Death

"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.

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.

(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.