Category / Dan’s Health Update

by jdansmall

Finally, then . . .

It’s been almost two years since I started this blog with this entry:

Just a word about the Finally, then . . . title for my blog.  I don’t mean for it to sound ominous.  It’s somewhat tongue-in-cheek as I recall several places in the New Testament where the author invokes this “concluding statement” and then proceeds to write page after page.  The fact is, we don’t know (most of us) when FINALLY will happen to our earthsuit.  But, we don’t walk around with our head in the sand when symptoms appear suggesting major life-threatening conditions.  So, this blog may last a few weeks, months, or years -as the Lord wills!  Meanwhile, I’ll pass on some “concluding statements” you might find helpful as you run the race (or crawl the path).

Oh, and a word about HOME.  I like how C. S. Lewis put it: “If we find ourselves with a desire that nothing in this world can satisfy, the most probable explanation is that we were made for another world.”  I really like his use of the word DESIRE because I’m coming to believe that what we DESIRE is the most important thing about us!

And what two years it has been.  Riddled with great health for 58 years of my life and having more energy than should be legal (at least some thought so), I was alive and well!

Somewhere in the course of things my DNA misfired and decided it needed to protect my system from something so it turned my bone marrow into scar tissue and proceeded to mass-produce white cells in my spleen of all places!  I’ll spare the details but I’ve been to specialists and prayer meetings and tried home remedies, essential oils, even a few non-essential things, too.

The best we could do was use an oral chemo (trans. “poison”) to kill off as many excess white cells as possible to prevent the spleen from blowing up -or whatever happens when your body has zillions too many white blood cells.  It was a month-by-month chess game: I’d get blood drawn, see the big number after WBC and we’d decide how many pills I have to take every day.  The next month it may be way down and I can cut back -no clear science on this.

Well, the time has come, as it does for everyone, to face the fact that the meds surrendered the fight.  My surrender to that fact came this past Sunday after another trip to ER only to discover that because of the “advanced state” of my cancer, thrush (yeast infection) in the mouth and throat was “normal.”  Oh, and my WBC was at 136,000 in spite of how many pills I was taking.  After a week of not being able to eat because of the mouth/throat pain I lost another 12 lbs.

Do I have you fully onboard my pity train?  Sorry if it sounds like the rantings of a lonely opportunist.  I don’t mean it that way.  It’s a soft way of leading to this:

I am officially OFF MEDS!  except pain-blockers (YEA, pain-blockers!!!)  I am officially on HOSPICE!!  No More Hospital trips, Dr. appointments, etc.

So, what happens next?  I don’t have a clue.  I hope to make some calls today to folks who’ve observed this happen before to see what we might expect.  I suspect that it won’t take long for those WBC’s to take over one or more of my organs, declare a coup, and bid me adieu.  Days?  Weeks?  If it’s going to be days and nights filled with more and more pain meds, sooner sounds better to me.

Meanwhile, lift up my precious bride and our dear children.  They’ll have lots of my half-baked ideas to take out, not too many nest eggs to harvest, and a whole life ahead of them.

I am eternally grateful for a heritage that includes a deeply embedded confidence that “The Lord is my Helper, what shall I fear?”

We’ll hope to get the rest of the Jesus Trilogy scheduled on the blog and then, maybe, someday, in print.  At the end of the day, when it’s all been said and done, “Just give me Jesus!”

by jdansmall

By What Manner of Death

No matter how you slice it, death stinks!  Or, as Scripture says, “Death stings!”  The human psyche is repulsed by it, yet it is one of the unavoidable universal experiences common to every living, breathing being.

The fact that we spend much of our lives in denial of mortality and sometimes spend our fortunes trying to postpone the inevitable suggests that perhaps it isn’t what we were originally intended for.  The futile search for the “fountain of youth” is more than a fairy tale. It is, in some sense, a striving to recover our primal design.

The fact of the matter is that if you were to reduce the Bible (God’s design manual) to the first two chapters of Genesis and the last two chapters of Revelation, you would discover a world without death, a world in which life pulsed in every atom of the universe.  Also, if you were to focus on the life/death issue as addressed by Jesus (God in human flesh), you would see a Message intent on life, a death-conquering life.

Jesus declared, “I came so that they could have life – yes, and have it full to overflowing.”  The most famous Scripture reference, John 3:16, targets this issue head-on: “For God so loved the world that He gave His only begotten Son, that whosoever believeth in Him should not perish but have everlasting life.”

The apostle Paul was inspired by God to declare that death was, in fact, the last enemy to be destroyed (1 Cor 15).  Romans 6:23 confirms what Genesis 3 described: death is the direct consequence of sin.  So it is evident that death (and the ills that lead up to it) is not what our Maker meant for us.

In light of all this, what should the attitude of a follower of Christ be toward death?  It’s one thing to celebrate the promise of “eternal life,” but quite another to face the grinding, debilitating, all-consuming onset of death in our bodies (or those of loved ones).  We read of miraculous “resurrections” in the Bible and even down through history as God intervened by raising up one who was clearly dead.  But we must quickly point out that these “healings” were merely temporary as every person (i.e., Lazarus and Tabitha) had to face death again at some point.  Only Jesus Christ experienced a permanent resurrection, which, by the way, He promised to all who follow Him.

This brings us to the strange statement John made in the final story recorded in his gospel.  Jesus and the disciples have just finished a “men’s breakfast” beside Galilee.  Jesus pulls Peter aside to commission him as a shepherd of Jesus’ “flock.”  Then He gives Peter a heads-up about the end of his life when He says, “… when you are old, you’ll stretch out your hands, and someone else will dress you up and take you where you don’t want to go.”  By way of explanation, John says, “He said this to indicate the sort of death by which Peter would bring God glory.”

In what amounts to an aside in the grand story of Jesus, we are handed this new pair of glasses – a very different way to see death, “by which Peter would bring God glory.”  Suddenly everything looks different.  Jesus’ own gruesome death wasn’t an unfortunate tragedy, it was a carefully planned means of “bringing God glory.”  Stephen, the Church’s first martyr, sees glory as the stones crush his life out of him, and a collaborator in his murder, Saul, witnesses first-hand a death “bringing glory to God.”

Saul, renamed Paul, would later write concerning his own life, “Christ will even now, as always, be exalted in my body, whether by life or by death.”  Then, after years of history-making service, Paul writes biographically, “. . . the strategic time of my departure is already present. The desperate, straining, agonizing contest marked by its beauty of technique, I like a wrestler have fought to the finish, and at present am resting in its victory. My race, I like a runner have finished, and at present am resting at the goal. The Faith committed to my care, I like a soldier have kept safely through everlasting vigilance, and have delivered it again to my Captain.” 1 Timothy 4 (Wuest tr.)

Taking our cues from David in Psalm 23, those who have made the Lord their Shepherd can pass through the valley of the shadow of death without fear.  Some, like Stephen in Acts 7, find themselves suddenly translated to Glory while in the prime of life, while others live well into their eighties and nineties.  Those of us who get a terminal prognosis “prematurely” are tempted, like Peter, to ask “what about so-and-so?”  That question is always met with the same question Jesus posed to Peter, “If I want him/them to live forever, what is that to you?”  Bottom line: we must live our life, not someone else’s.

Where do you find yourself today?  Have the doctors given up on you?  Maybe you’ve been given six months or a year, what do you do with that?  Perhaps it is a loved one who is facing death.  Take heart, this too can bring glory to God.  Let that vision settle into your innermost spirit.  Thank God that “whether by life or by death” you know that “goodness and mercy will follow you ALL the days of your life and you will dwell in the house of the Lord forever.”

J. Dan Small
April 13, 2015

by jdansmall

A Living Miracle

I haven’t posted a health update for months and months because everything stayed the same and changed the same like waves rising and falling with the tide.  Some weeks I enjoyed ample energy to rise early, write, help a little around the house, start a non-profit org. here and there, etc.

Other weeks I felt like staying in bed, wobbly legs weren’t sure they liked holding me up at the top of the stairs.  Blood levels went all over the map and sometimes responded to the oral chemo, other times they ignored it and went flying.

Still, I felt motivated to add more to my life by launching a non-profit to help raise funds and recruit teachers and volunteers to help in Northern Iraq.  Materials have been ordered, promo videos are being planned.  Before long we could come to your group and alert folks to the urgent need and open doors for “being Christ” to Muslims, Yazidis, Syrians, and Medes.

Then I got a sore throat.

Combined with lots of chest congestion.

I tried all the natural (and some unnatural) means of cure.

Then I got a fever.

I couldn’t breathe.

Then my fever went higher.

Then my daughters took me to ER.  (We had dropped Rebecca off at the airport at 5 in the morning for a quick visit with friends in AK -we just didn’t realize how quick a visit it would become).

Before they gave me anything, the doctors in ER wanted to make clear that because of my underlying terminal condition they would not opt for putting me on a ventilator -“did I have my living will taken care of?”

For hours I felt like invisible hands were getting a tighter and tighter stranglehold on my throat and I had to fight for every breath.

Chest x-rays revealed some pneumonia.  Let the IV antibiotics begin.

“You’re going to be admitted, but we don’t have any rooms available.  Please wait.”

We waited.

What a remarkable journey my youngest two daughters have been on already in their short life.  What troopers!  What gracious servants!

We waited some more.

Finally, a room.  Oops, nope, not that one.

“Okay, we’ve got a new room for you now.  Transport will be by in a while to move you to your room.”

We waited a while.

Finally took up housekeeping in Room 326.  A cozy corner room with a sofa, recliner (of sorts), and fancy airbed.

I can’t lie down or my sense of asphyxiation takes over.  I spend the whole night standing for a few minutes (best position for getting breaths), then sitting for a few minutes, then reclining for about 1 minute (till I can’t breathe), then standing again, then a trip to the bathroom.

Caleb came up from the Harbor to be with us (about 11 pm).  He “slept” on a chair and/or the floor but was always alert if I moved (which as noted above was every 2-4 minutes).  The girls shared the sofa -briefly.  They had to leave at 4:15 a.m. to go back to SEATAC to pick up Rebecca.  She wasn’t in the Great Land for 24 hours.  Not the original plan, needless to say.

Throughout yesterday morning, more of the same – standing to breathe, sitting or reclining to rest (for about 3 min), then back vertical again.  I was quite sure I would NEVER again feel that wonderful full breath you get once you’ve “caught your breath.”

Two of my kindred spirits (John A and John M) came to visit and pray.  We just laid it out before the Lord.  No fireworks, no theatrics, just heart-cries!

I asked to be taken off oxygen.  My blood oxygen level stayed high!

In the afternoon my daughter Sarah (a nurse practitioner in Virginia) called suggesting they put me on a medication to ease the breathing tension.  Folks here knew exactly what she was talking about.  Within hours I was breathing a bit more relaxed.  A strong dose before bedtime meant I slept for about 6 hours straight -lying down on the bed (which we had figured out how to make slant on a 40 degree angle toward the floor) -yes there’s a stout foot-board so I didn’t keep sliding into a heap on the floor!

This morning I feel I’ve been given yet another new lease on life.  Still some wheezing and congestion, no fever.  Good appetite!

As I’ve read in recent weeks of several friends who have graduated to Glory I’ve been reminded that “our times are in His hands.”  Yes, I’m ready when He calls, but after this experience I am going to ask that the “end” not be through asphyxiation.  -That is indescribably not fun!

Meanwhile, back to the trenches.  I think they’ll let me go home today.  I won’t mingle with sick folks for a while just to protect my immune system (what there is of it).  Lot’s of writing to do.

Thanks for putting up with this chapter of “The Life and Times of J. Dan Small.”

 

by jdansmall

Plant a Tree

Luther Plant TreeWith the same spirit that Martin Luther expressed, I am pressing on with unprecedented plans, projects, and proposals.

My last visit to the doctor was probably my last visit to the doctor because he has all but given up on regulating my blood counts and told me to line up hospice care.

So, I’ve got four books I’m currently writing, have just launched two non-profits this month, and am planning a series of speaking tours to raise awareness of the incredible challenge being faced by Christian workers in northern Iraq.

Stay tuned for more!

Oh, I wrote this poem today for the Super Bowl:

“Just a game,” I hear you say
“Why get pumped when grown men play?”
There’s much more than meets the eye
Let me show the reason why:

The Super Bowl is more than sport
We scarce can measure its import
You see, what happens on the field
Life’s greatest lessons just might yield.

It’s not by chance the teams are there
They worked hard and did prepare
We cannot hope to make big plays
If we just loaf and waste our days.

And, by the way, it takes a team
To reach your goals, fulfill your dream
When we help others do their best
‘Tis only then our lives are blessed.

It is in giving we receive
Amazing feats we all achieve
When stubbornly we want our way
Our real desires we just delay.

Quitters don’t win, it’s true, you know
Winners don’t quit, they don’t let go
To win life’s game you must stay in it
Stay focused right to the last minute.

And once the game is finally o’er
Regardless of the final score
Our life, on winning can’t depend
Tomorrow we can start again.

And this one for a poetry contest on “understanding:”

Words and letters on a page
Mysterious powr’s can engage
Precious mem’ries may restore
Or incite loud cries for war.

Sticks and stones cause short-lived pain
But stinging words can long remain
Good friends sometimes are estranged
By thoughtless words that were exchanged.

But all’s not lost, we soon shall see
The pow’r of words wrought graciously
From selfless, humble hearts we hear
“Please, forgive, I am sincere.”

So we’re not left to chance or fate
We have the power to create
The words we use, you must agree
Could change the course of history.

And so it is that man is blessed
A wondrous gift he doth possess
Equipped with words on every hand
To help another understand.

Let us wield this mighty sword
So that peace may be restored
Words that bless and help and heal
Will help us reach our high ideal.

by jdansmall

STOP asking God to heal me!

“What? Are you giving up?  Is it that bad?”

No, but the Lord wants me to let you know that He has heard your many petitions, He’s on it and will take it from here.

“So, we don’t need to pray for you, then?”

Actually, I need you to pray even more fervently, “wrestle in prayer” if you have to, that God’s FULL PURPOSE for me will be accomplished!!  -that NOTHING and NO ONE (including me) would get in His way!

“But how are you doing, really?”

As Paul says in 2 Cor. 4, “the outward man is wasting away but the inward man is renewed day-by-day.”  My body continues to grow weaker but I’ve never felt more strongly the Presence and burden of the Lord.

“And what about your healing?

God’s Spirit has borne witness in me that complete healing is GUARANTEED!  How, when, and where are questions to which He simply replies, “My supernatural infusion of grace is yours and that is all you need today.” (2 Cor 12:8-10)

Join me in thanking the One who does all things well!

“And God is able to make all grace abound to you, so that always having all sufficiency in everything, you may have an abundance for every good deed . . . ”  2 Corinthians 9:8

You might appreciate the insights I’ve appropriated from T. Austin-Sparks.  I put it in a recent blog post: https://jdansmall.com/category/toward-wholeheartedness/

by jdansmall

TMI (too much information)

At the risk of flooding inboxes with unsolicited updates, I realize that I haven’t actually updated my health on this blog for months.  I guess I assumed most were connected via email or FB.  For the rest of you, here’s a thumbnail sketch:

Through the summer my condition improved to a point where, in August, I was nearly ready to give up my Handicap parking permit.  It was amazing to walk into stores and not need the motorized cart.

That was shortlived, however, and by September my cell counts were going crazy and my energy tanked.  The downturn was steady through October and the swelling of my spleen meant even less room for food and the  whole digestive process.  As a result my weight went down finally breaking into the 130’s.  That was when my doctor got serious.

So, for the past six weeks I’ve been on the special mutation-inhibiting drug (Jakafi) designed to stem the progress of this disease.  It’s a really, really special product (I remind myself as I pop 2 pills a day at $150 each).  This has seemed to push back some of the symptoms resulting in better appetite and slight weight gain.

Things were looking up through Thanksgiving -had a delightful day with 19 around the table, but, with lots of guests often come visiting viruses.  I didn’t succomb until last week when the sore throat hit with a vengeance.  Not good timing!  Now when I had a bit of an appetite I couldn’t swallow a thing. When the fever hit we started on antibiotics.

It’s been five days and symptoms are finally starting to ease but the wear and tear on my intestinal system from all these meds has created another set of pains.  Do your repair, probiotics!!

So, there you have it.  Every breath is grace, every day lived is a gift.  If all I can do is lay here and pray down God’s blessings on each of you, may it be worth every moment!

If you’re following my daily (more or less) installment of Psalms a Tempo, you’ll note that for the past couple of days they haven’t been as timely.  I’m thankful for the mental energy today to get back on task.

May your meditations this holiday season bring life to you and yours!

The Lamb of God born in a manger -how appropriate!

J Dan Small

by jdansmall

GOOD NEWS!

I know it’s been a long time since I reported on my health.  It seems I go for a week or two downhill (less strength, larger spleen, more sleep) and then turn a corner without obvious changes in medication or diet.  However, I must say that the past week has been one of my best in over a year! 

I feel that something substantial has changed inside but I’ve been reluctant to express it lest it turn around the next day.  This has been such a welcome improvement!!  To what do I attribute it?  Certainly prayer, perhaps the fact  that I just finished paraphrasing the New Testament (a project I’ve been plugging away at for 8 months), or maybe the brother who prayed for my DNA a week ago.

Anyway, thanks for praying and watch for news of some new developments in the days ahead!

by jdansmall

Two steps forward, three . . .

It has been over three months since my last health update -I didn’t sense that there was anything to report. Since going to NYC for tests and being told I may not have Primary Myelofibrosis but Chronic Myelomonocytic Leukemia, I’ve had more tests and consultations on this end of the continent which, according to doctors here, confirm the original diagnosis.
This see-saw has been bearable since my overall health has been mostly pain-free. I decided to monitor my own blood levels and meds until something changed. For many weeks the lab results were encouraging and I kept meds to a minimum. However, I was troubled by decreasing alertness and a gradual increase in discomfort (pain).
My most recent blood test revealed that several components have returned to a CRITICAL stage. I knew something was changing because I’ve spent a whole lot more time in bed than I’d like. This week more of the pain and general weakness has returned almost to the point it was 11 months ago.
Having said that, I’m reminded that the original prognosis was fairly grim and I’ve outlived that a few times over!
My consultation with an “expert” at Seattle Cancer Care Alliance in April suggested that at my current levels I could have 10+ more years in me. But, as I’ve said before, the one thing that’s predictable is the unpredictability of how/when this disease develops.
I tell you all that simply to ask that you pray with me for divine insight into the healing God has in mind for me. I have been studying this more intently for the past few weeks so spiritual “opposition” may have increased as a result.
Thanks for your many prayers!
J Dan Small

by jdansmall

mini-update

The appointment on Tuesday was “nothing to write home about” but here are the highlights:

  • Blood counts are rising but not dramatically
  • Will resume low dose of Urea to keep white cells from spiking
  • We are exploring the possibility of clinical studies in the area that include decitabine
  • I will move (slowly) toward the likelihood of a stem cell transplant
  • My symptoms are present but not debilitating
  • “come back in 2 weeks to see what blood counts are doing”

Pray for wisdom in knowing what direction to go with these various options.
Thanks,
jdansmall
PS Keep the Small clan in your prayers as we commemorate the 2nd anniversary of Jeremiah’s home-going on Saturday, March 1.

by jdansmall

A New Diagnosis

Well, friends, after a long phone conversation with Dr. Mascaranhas and further review of my bloodwork going back to October of 2012, he is quite certain that I have CMML (Chronic MyeloMonocytic Leukemia) rather than Primary Myelofibrosis. So what, you ask? That would explain why the medications I was taking weren’t thoroughly helpful. A lot of the symptoms and components of this disease are similar to PMF with the only curative option being a stem cell transplant.
However, there is an FDA approved medication (Decitabine) that has been effective in putting the disease into remission in many CMML patients. The downside is that it doesn’t cure anything and probably has to be taken monthly for as long as I live (5 days in a row every month at an “infusion clinic.”) The doctor said that, over time, it does take its toll on the body and so although he has patients who have been on it for a decade, many don’t make it half that long. He would recommend that I take steps toward the stem cell (bone marrow) transplant. He believes that I am in the higher percentile of good candidates for success –if I can find a younger male donor who matches 10 for 10 on my tissue type.
While we pray for divine healing I will be seeing my local doctor next Tuesday to explore beginning the decitabine to see how my body responds. I’m pretty sure the same office has an infusion center so I won’t have to go elsewhere for it.
I’m anxious to find out what my cell counts are as my energy level has waned and I can feel turmoil in the abdomen that reminds me of the season last summer before I got on medication. My appetite is good and I’m sleeping okay just tire easily.
On another subject, I am in (hopefully) the final stages of production –working with a publisher/editor/layout specialist- of REFLECTIONS (devotional book of hymns and commentaries from Jeremiah’s writings.} It will be a hardback book and we’ll be able to make it available online as well as offer bulk discounts for churches or individuals that want 15 or more. I’m hopeful that they’ll be “in print” within a few weeks.
Thanks for casting all these cares with me before the Lord who cares so much for us! (1 Peter 5)