Grief & Grieving

One of the privileges of being a pastor is being with people in their darkest hours.  The sudden illness or unexpected accident - the cancer diagnosis - the death of a dearly loved parent, child, spouse or friend.  It is a privilege for me to be there because I am an outsider.  It is not my loved one who is in critical condition.  It is not my relative who has died.

I am there to represent God and God's people.  I have the delicate task of reminding people of God's love for them even when they are torn apart by their grief.  I remind them that God knows our pain, that Jesus has shared our suffering and that he will never leave us or forsake us.

Although I had been counseling people in their time of sorrow for many years, when I was diagnosed with myelofibrosis I gained a more intimate acquaintance with grief.  I saw things from the other side of the counseling.

A fatal diagnosis brings with it a tremendous sense of loss.  Since I had imagined there was no reason I would not live into my nineties, I felt that my life had been cut short.  Contemplating my death made me feel sad about being separated from my wife and loved ones.  I was disappointed that I would not be able to enjoy my grandchildren into my old age.  I was unhappy that I might not be able to continue my work when I "should have" had ten or fifteen more years to go.

Denial
At first there is a sense of breathlessness - a feeling of panic.  "This cannot be happening to me!  There must be some sort of mistake!  There must be some other explanation!  Having heard the diagnosis from the oncologist I rushed to the internet to see if there really was such a disease and found other patients in support groups to see if their symptoms were really like mine.  For me, denial was difficult to sustain very long. But some patients have more ambiguous symptoms that prolong the agony.

Anger
Next comes a sense of resentment, "Why me?  How did I get this weird disease?  Who is responsible?"  Some people work very hard to discover some sort of chemical exposure that led to their disease.  Others lash out at the doctors who did not diagnose them earlier.  I'm sorry to admit that my own anger showed up in my macabre jokes about death and my perverse pleasure in telling even complete strangers about my diagnosis.  The underlying motive was anger motivated by pride and searching for pity.

Some myelofibrosis patients go into a rage when someone says, "You don't look sick."  I feel about the same when I hear, "None of us knows how long they will live."  This is anger that comes from grief and it is not entirely logical.  We are feeling our losses and it seems like others doubt that we are really gripped by this deadly illness.

Bargaining
Some new patients turn to a vegan diet and wonder what other natural remedies might be available to beat the disease.  Others are sure that cannabis oil is the answer.  Others suggest that all patients should avoid all pharmacological medicines.  Others try juicing. (The internet conveniently has hundreds of sites that promote one or another "natural" or "miracle" cures.)  In our grief we feel there must be some simple answer!  What food would you not give up in exchange for your life? What treatment would you refuse if it meant deliverance?

Depression
For me this stage resulted in weight gain.  It is discouraging to have an incurable disease.  What is the point of taking care of my diet and continuing to exercise?  I ate whatever I wanted and as much as I wanted. What difference could it make?  Dark chocolate, take me away!

Acceptance
Not to be confused with resignation - acceptance is where you decide to deal with your problem to the best of your abilities. After a while, I woke up to the fact that in spite of my grim diagnosis I still felt pretty healthy.  I realized that I was foolishly wasting what time I have left making myself miserable.  I soon determined that I was not going to lose another minute of the present fretting about things that might or might not happen in my future.

I learned that while everyone's experience is unique, there are no short-cuts through grief.  Knowing the steps of grief doesn't make grief go away.  You cannot just "get over it."  You have to process it and that takes time.  Your loved ones are suffering grief of their own over your diagnosis.  It is a difficult time.

The Slough of Despond is nothing new, but you will find that after awhile you can find your footing and work your way out again.  Here are some of the more obvious steps...

(1 Peter 4:1 ESV) Since therefore Christ suffered in the flesh, arm yourselves with the same way of thinking, (Hebrews 4:15 ESV) For we do not have a high priest who is unable to sympathize with our weaknesses, but one who in every respect has been tempted as we are, yet without sin.(Romans 8:28–29 ESV) 28 And we know that for those who love God all things work together for good, for those who are called according to his purpose.29 For those whom he foreknew he also predestined to be conformed to the image of his Son, in order that he might be the firstborn among many brothers.(Romans 8:35 ESV) Who shall separate us from the love of Christ? Shall tribulation, or distress, or persecution, or famine, or nakedness, or danger, or sword?(Romans 8:37–39 ESV) 37 ¶ No, in all these things we are more than conquerors through him who loved us.38 For I am sure that neither death nor life, nor angels nor rulers, nor things present nor things to come, nor powers,39 nor height nor depth, nor anything else in all creation, will be able to separate us from the love of God in Christ Jesus our Lord.

Death Panels

The news is full of speculation about what will happen if the ACA (aka: Obamacare) is repealed and what might replace it. Some of my MPN friends are feeling nervous - and rightly so.

We who have an incurable fatal disease like myelofibrosis are a serious expense to insurance companies. The drug I take twice a day costs $10,000.00 a month.  If I were to undertake a stem cell transplant it would cost somewhere in the neighborhood of a million dollars.

I like to think I'm worth the expense - but I'm not sure the insurance companies would agree.  So, they might well like an opportunity to limit their liability for me and my disease. They might like to deny coverage for what is now my pre-existing condition. They might like to drop me completely.

Friends in countries that have government run "single payer" insurance are horrified by the difficulties we Americans have in obtaining and keeping good coverage.  My American friends are horrified by the raft of regulations that increase waiting times and limit care options to people in places with government provided health care.

I don't know what will happen - any more than anyone else.  I suspect that one way or another there is likely to be a crisis.  I much prefer the chances I have with private insurance, since market forces are likely to push them to continue to offer care to people like me. (After all we are a small minority and nobody would buy their expensive insurance if it did not cover any expensive care.)

I do not at all trust the government to make the decisions about what will be covered or not.  Ours is a government that is complicit in the murder of tens of millions of unborn babies - particularly babies who were suspected of having expensive disabilities.  Legalizing "assisted suicide" is (as the Netherlands has demonstrated) doorway to euthanasia.  And who should be euthanized?  Certainly it should be the people who are too expensive to keep alive - like me.

Mourning Our Losses

After I was diagnosed with myelofibrosis I was blessed to find a support group on Facebook that is very well managed and full of caring people with experience in my disease. Some are patients, others are family members and caregivers. The group encouraged me and helped me get educated about MPNs in general and myelofibrosis in particular.

Being a part of my support group is one of the best things that has happened to me with respect to having myelofibrosis. The people in the group and I have a special bond - our disease. We care for each other, share with each other and encourage each other.

The downside is the constant reminders that myelofibrosis is a fatal disease.  Over time we lose friends to death. We struggle with every loss.  It is always difficult.

The Common Cold

I have a cold. Just a common cold. My sinuses hurt. My nose runs. My head aches. My voice is scratchy and I cough. It is just a cold. No fun, but not much of a threat.

But myelofibrosis weakens your immune system. While all of us worry about the danger of progressing to AML (acute myeloid leukemia) that is not what kills most patients. The greatest danger is probably infection - common infections that most people can fight off easily. But because of a weakened immune system, a myelofibrosis patient will eventually be overwhelmed and die.

Nobody wants to have a cold or the flu, but most people don't think it will kill them. With myelofibrosis you always wonder, "Is my immune system up for this?"

So far, so good. I've had various colds and infections, but they all progressed and passed normally.

I think this cold will pass normally as well - the sooner the better.

The Long and The Short

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.

(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.

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.