Things You Get Tired Of

I am not thinking of the fatigue. That is kind of like BEING tired. I guess I AM tired of the fatigue, but that is not what I originally had in mind.

I'm tired of having myelofibrosis every day, day after day. There are never any myelofibrosis holidays where you can leave it on the clothes tree and forget it for 24 hours. So today it is making me grumpy.

I am tired of the threat of myelofibrosis.  It is like the bully at school. Some days he ignores you and other days he just steals your lunch money. But there is the constant threat that he is someday going to beat you up! You know it is going to happen and there is not a thing you can do about it.

I am tired of the obscurity of myelofibrosis. It couldn't be simple - no! You have to explain it all the time. Nobody knows what it is. "Yes it is a cancer - kind of a chronic leukemia."  "It is turning my bone marrow to fiber so I will eventually not make any blood." "We don't really know how fast it will progress."

I'm tired of the people who have a home remedy they want me to try. Marijuana, mega vitamin C, turmeric, special diets and so on... They all claim that their approach is working for them, but they are all on very different things. What it proves is that a chronic disease with fluctuating symptoms is the perfect laboratory to demonstrate how confirmation bias works.

I am tired of dealing with doctor's offices and hospitals and pharmacies and labs and insurance companies month after month. I am blessed to have good coverage and I don't have any complaints about the people I deal with. But the process is a drain.

I am tired of losing friends to this miserable disease. Some I know pretty well. Others not so well. One way or another, myelofibrosis kills far too many of them and we are left to send our condolences. (Until I had myelofibrosis I never realized how limited English is for expressing sorrow.)

These are the realities of having a chronic - but deadly - disease like myelofibrosis. You can't forget it. It intrudes into your life everyday. It is not going away.

This is a marathon... not a sprint.

Learning To Lament

Primary Myelofibrosis is a serious, incurable, life limiting, blood cancer.  But I have had a pretty easy time of it compared to many of my fellow patients. Since I was diagnosed in 2013 I have not been hospitalized. My symptoms have been mild by comparison to many who have severe bone pain and/or require frequent transfusions to keep their numbers up. I have great health insurance coverage that has opened doors for me to advanced specialists and provided me with the expensive medication I take twice a day. I have responded well to that expensive medicine so that my symptoms have improved and I have been able to stay active. I have been able to continue working as a pastor.

That is not to say that myelofibrosis has not made an indelible impact on my life.

All of us myelofibrosis patients have fallen out the door of the airplane of life. Some of us are falling faster than others - but we are all falling toward death. For the moment it seems that I have a scrap of a parachute, but it is smoldering and likely to burst into flame. It is a reality that I cannot escape.

My life is foreshortened. Every moment is more precious. The experiences of my fellow patients are portents about my own future. It is sobering. It is a cause for lament - but not despair.

Psalm 102:23–24(ESV)He has broken my strength in midcourse; he has shortened my days. “O my God,” I say, “take me not away in the midst of my days— you whose years endure throughout all generations!”

Pruritis & Other Unpleasant Realities

Some days are just pruritus days. I don't know why. But somewhere - arms and legs, chest and belly - somewhere I start to feel prickles that turn into stings that cause me to twitch and jump. I can barely resist scratching and choose instead to rub with the palm of my hand - cautious lest I agitate this insidious monster even more.

There are no welts. There is no rash. It is mostly unpredictable. After a shower. Especially if I rub myself dry with the towel. It might come then. But it also might come when I lay down for bed at night.

Distribution of Aquagenic Puritus in PV

(SiegelFP, TauscherJ, PetridesPE.Am J Hematol. 2013 Aug;88(8):665-9.)

Lotion doesn't seem to help me. Sometimes it makes it worse. 

There doesn't seem to be much that I can do except to wait for it to subside. I rub my hand over the areas if I have to. But mostly I just try to endure it without too much twitching and jumping.

What is it? A cytokine storm? I don't know. Part of the experience of living with myelofibrosis, I guess.

At least I don't have bad puritus days everyday. (Some people do.) And I suspect that my experience is milder than some of my MPN friends. And at least it doesn't last all that long as a percentage of my day.

Count your blessings! Things could be worse!

The Danger of Denial

As a patient with a life limiting disease (primary myelofibrosis) I am all about maintaining a positive outlook. This positivity does not mean that everything is great all the time. It means that in spite of the difficulties we find joy. It even means that our difficulties push us to do more with our lives than we would have otherwise. We savor life more. We are more encouraging. We are more deliberate.

Denial may sometimes masquerade as a positive outlook, but it is not. In fact, it is dangerous. Denial is a natural part of the grief process and grief is a reasonable part of receiving a life changing diagnosis. Genuine positivity vaults us over our difficulties to a higher perspective where we find greater meaning and purpose that grows out of our problems. Denial says, "Problem? What problem?"

Denial dresses up in many different costumes. One person may simply refuse to acknowledge their disease at all. They do not want to learn about it. They do not want to talk about it. It is the proverbial elephant in the room, but they ignore it completely. Meanwhile it hurts their relationships. Many times I've heard from husbands, wives or children who feel shut out by their beloved patient who refuses to deal with the reality of his or her disease.