The Sympathy Attention Span

I was reminded of a strange reality this weekend.

When I was diagnosed with myelofibrosis four years ago, I was free with information about my diagnosis and my "mean survival rate" at that time.  People were very sympathetic and kind.  Some were acquaintances who I see infrequently.

Fast forward four years. I meet those same people at some event and they ask about my situation. They wonder why I am still walking around - seemingly well when I had a fatal diagnosis four years ago.

Was it a misdiagnosis?  Have I been healed since then?  Was I not telling the truth four years ago?  They don't usually ask these questions directly... but they are there as a subtext.

No problem - I'm happy to explain.  But for most people their eyes glaze over a few sentences into the explanation and they are are at the limit of their interest. They are ready for me to stop talking and leave them alone.  I believe they are thinking - "OK - Dave has some serious disease - but it obviously isn't very serious right now and he might live a long time with it. We don't need to be too concerned with that right now."

So my strategy is to give people a shorter version of the answer.  "Yes, I still have this disease, but for right now it is chronic and not acute. Thanks for asking."

Bullet Points For Living With Myelofibrosis

Everyone is shocked when they are first diagnosed with myelofibrosis.  Most of us had never even heard of it before.  By the time the doctor explains it, many of us are feeling panic.  "I have a deadly disease.  I'm going to miss out on life and loved ones.  How long do I have? What will happen?"

The good news is that for most people life after diagnosis will be measured in years rather than months.  But this means you need to have a strategy for living with your diagnosis.  What follows are brief statements of my thoughts about a successful strategy for living with myelofibrosis.

• Come to terms with your mortality: People do not like to think about death even though they know that the mortality rate is 100%.  Now is the time to get answers about life and death and God and eternity.  I strongly urge you to talk to a pastor who can lead you to authoritative answers from the Bible.  This is no time to make up your own religion or invent your own god.

• Work through the natural grief: Denial, anger, bargaining, depression and acceptance are stages that people go through - but you may have several of these things working in you all at the same time.  Recognize grief and work through it.  Constant bitterness, anger or despair will destroy you much faster than any disease can.  Read, meditate, get counsel and find peace. 

• Do not let the uncertain future rob you of joy today: Do not fret about what bad things might happen. Instead, be determined to live in a full appreciation of the good things in the present.  Make the most of each day you do have rather than wasting these days worrying about the future.

• Stay as active as you can for as long as you can: Myelofibrosis can bring all kinds of limitations into your life. But do not give up too much too soon. Continue (or start) a program of regular exercise. Watch your diet. Travel. Attend events. Keep working. Serve as a volunteer. All of these things will help you fight the battle with grief and depression. Cultivate a hobby that helps you relieve stress.

• Learn all you can:  Do not be tempted by denial.  If you ignore your myelofibrosis it will not go away. Instead it will sneak up on you. You need to learn all you can - good and bad - so that you can be your own advocate with doctors and other care providers.  Do not be gullible and get sucked into various conspiracy theories or miracle cure claims you found through internet click-bate sites.

• Find doctors that you trust:  You want a doctor (hematologist/oncologist) who is either an expert in MPNs or who is willing to admit she is not an expert in MPNs but is willing to consult with experts. If your local hematologist/oncologist is not an expert in MPNs (and very few are) then you should have at least one consult with an MPN specialist who will evaluate your status and communicate with your local doctor.

• Be determined to do worthwhile things with your MPN:  You can make a positive difference in other people's lives!  Get involved in patient advocacy and education.  Raise community awareness.  Register marrow donors. Do fund raising for research.  Make having myelofibrosis worthwhile.

• "Rejoice with those who rejoice and weep with those who weep:" The MPN community is full of highs and lows.  It can get you down when people are suffering and dying, but those who are left behind need you to stick with them.  Do what you can to provide comfort, good advice, friendship and encouragement to the other patients and care providers out there.

• Do not always think the worst:  People will say clumsy things like "You don't look sick!"  They mean it as a compliment, but we often take it as a suggestion that we are faking our.  Be gracious and do not let it throw you into a fit.  / Your CBC numbers will fluctuate every month.  Do not let it panic you.  Ask appropriate questions and realize such fluctuations are not usually significant in and of themselves.  / Your medical professionals are only human and they will make mistakes and oversights.  Advocate for yourself, but not as an enemy of the doctor.  You are on the same team.

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.