Archive for February, 2011

February 28, 2011

2-27-11 Sunday  + 4 months

Seems like it’s easier now to think in terms of months rather than days, and today is exactly 4 months since my transplant.

Status:  I do have more energy, which allows me more activity, which in turn feeds more energy.  A good cycle, although I do get a little worn out by the end of the day. Been doing a little cooking myself.

Events: At Hopkins last Friday, counts still look stable.  Primary reason for visiting was to the see GVH group.  Pretty much confirmed I have some chronic graft vs. host disease.  Seems to be mostly limited from the neck up (dry skin, dry mouth, dry eyes).  On the positive side the head GVHer said, “Chronic GVH is the best therapy against leukemia!”  And we’d just watch it for now.  In response to my comment that it made me feel crummy, he said, “If people didn’t get better, we wouldn’t be doing it.”

  Liver enzymes are still up, which may be from the anti-fungal meds I’m taking or from GVH.  If they settle down that would be good, if not I was told, “A liver biopsy may be in your future.”   I consider the word “future” a good word.

Comments:  Next visit is next Friday, and then later a visit to the famous Wilmer Eye Institute at Hopkins to take a look at my dry eyes.  The lyrics from the Jackson Browne song suddenly sprang to mine, “Doctor my eyes, tell me what you see.”

A tip to Tom Linden for referring to cosmologist Brian Greene.  Dr. Greene is string theorist.  These are guys who believe matter isn’t made up of tiny little balls like protons, neutrons, and electrons, but tiny vibrating strings.  Some like wiggling strands of spaghetti, some like wiggly bracelets.  Of course, we’ll never be able to prove that theory, and it has some other difficulties like requiring 10 or 11 dimensions not the 3 or 4 we’re used toBritish scientist J.B.S. Haldane once said, “The Universe in not only queerer than we imagine, is queerer than we can imagine.”  We live in a strange and sometimes treacherous place, but it’s the only home we have.  And as the great philosopher Dorothy Gale said, “There’s no place like home.”




February 22, 2011

2-21-11 Monday Day +117

Status:  Feeling stronger, and always energized by a good night’s sleep.

Events: All hematology values look good, and my platelets keep increasing.  Liver enzymes stable but  still up, that with some new red patches on my face and shoulders combined with continued dry eyes and dry mouth certainly suggest some GVH.  Have an appointment Friday to see the GVH group.  They’re usually loathe to start steroids, but relief of my dry mouth would be a godsend.  If you chewed a cracker pretty soon you’d have mush in your mouth (chew it long enough, and it will start to taste sweet as the amylase in your saliva starts to break down starch to sugar).  I chew it, and all I get is a mouthful for sawdust.  Saliva is a terribly useful thing.

Comments:  I recently received a note from my donor.  It’s path was probably more secretive than any Wiki-leaked CIA cable, simply addressed to my coded recipient number and the donor’s coded number – only the National Donor Marrow Program knows the identity and whereabouts of either of us.  My donor shared she was a 32-yr-old woman in good health.  She said she was honored to have been in the program and wished me the best.  I shall write her a note back, but we aren’t allowed to contact each other personally until a year after my transplant.

  My cousin Sheldon (son of my Dad’s oldest living brother) made a note about Buzz Lightyear’s tagline, “To infinity and beyond.”  Actually you can go beyond infinity in several different ways.  The word itself comes from the Latin infinitas, meaning “unboundedness.”  So in its simplest concept it seems like it just keeps going and going like the Energizer Bunny.  But that leaves you with some strange twists.  For example, which is greater, the number of whole numbers (1,2,3,4,5 …) or the number of even numbers (2,4,6,8 …)?

  The answer is that they are both the same.  Take the set of whole numbers out as far as you want and then just double each one.  They form a one-to-one correspondence no matter how far you stretch it out.  The late 19th century German mathematician Georg Cantor called these countable infinities, but then went on to demonstrate larger uncountable infinities.  At this point in my freshman Number Theory class, I realized I wanted to be an engineer not a mathematician.

 Cantor said that an unbounded line would have an infinite number or points on it, but wouldn’t an unbounded sheet have more?  Cantor said yes and produced an infinity of other infinities. He gave them names, each starting with the first letter of the Hebrew alphabet, aleph.  The smallest infinity, corresponding to number of whole numbers he called aleph-null.

  The concept of infinity has always intrigued cosmologists.  Do we live in large but finite universe or an infinite one without an end?  The answer seemed to be settled by another German in the 1800s named Heinrich Olbers.  Supposed you stood in the middle of an infinite pine forest.  No matter where you looked you’d see a pine tree, some close, some further away, but it was truly infinite your line of sight would hit a tree.  No daylight anywhere.

  Olbers said, “Why is the sky dark at night?”  If we lived in an infinite universe, eventually our line of sight would hit a star, so the whole sky should be bright.  Just as there is no daylight in our infinite forest, there should be no darkness in our infinite universe.  This seemed to support the Big Bang theory of the creation of the universe.  An incredibly hot, dense speck, many, many times smaller than just a proton and containing all the matter in our present universe suddenly expanded with colossal velocity leaving us 13.7 billion years later with a very large but still finite universe.

  But that didn’t last for long.  My MIT classmate Alan Guth created the now standard inflation theory.  Simply, in just the first few trillionths, of trillionths, of trillionths of seconds of the universe’s creation, space expanded at even a more rapid rate, faster than the speed of light (although no information can be transmitted through space faster than the speed of light, there’s nothing that forbids space from expanding faster than that).  And apparently space is still expanding at an ever increasing rate.

  What that means is that there are some parts of the universe we can never detect because they’re moving away faster than light, so we’ll never be able to see them.  In a certain sense they are dropping over the edge.  In fact, all of space is accelerating away from us, meaning that at some time even the light from our closest stars will have dropped over that horizon, and if we were around then the entire sky would be dark.  But long before that our sun will have turned into a burnt-out cinder, and our descendants will be somewhere else.

 But I for one like where we are – perhaps the most beautiful; planet in our universe.  All we have to do is take care of it and ourselves.



February 18, 2011

2-17-11 Thursday Day +113

Status:  Feeling fairly well.

Events: At Hopkins for lab checks.  All hematology values look good, but we’re still playing whack-a-mole.  Liver enzymes are still up despite discontinuing antifungal and reducing anti-viral meds.  It may be some GVH (certainly goes along with dry mouth, dry eyes, and dry skin).

  Had a lung CT scan as a follow up, which showed some inflammation in my right lung.  Best guess is a continuing fungal infection, although I’ve been on some pretty powerful anti-fungal drugs for a long time.  It may be that with the return of my neutrophils, we’re just now seeing inflammation in response.  Going back on Monday for another lab check, and have reinstituted my anti-fungals.

  I neglected to mention something that happened Monday that impressed me.  Just when I was about to hop on the table to have my catheter removed the nurse practitioner said to everyone in the room, “Time-out.”  I was then asked my name, birthdate, had my patient ID checked, and asked what procedure I was having.  Several years ago, this “timeout” procedure was started in surgery to prevent medical errors (wrong patient, wrong limb, etc.).  I was pleasantly surprised that Hopkins uses it for minor procedures as well.

Comments:  And on the subject of improving medical care, I was happy to see IBM’s computer program Watson wallop the two most famous winners on Jeopardy.   This prospect augers in an era of using computers to a much greater degree assisting doctors in diagnosing and treating patients.

 Back on in the 70s, Dr. Larry Weed made some radical recommendations of how doctors should engage with the medical system.  One was what he called the problem-oriented medical record, in which you’d list the patient’s problems in the notes on the chart and clearly show your thinking.  He gave it an acronym, SOAP, standing for Subjective, Objective, Analysis, and Plan.  So you might write down S – feverish, sweating, O – temp 101, white count 12,000, boil on right buttocks, A – bacterial abscess, P= culture abscess and blood, start on anti-staphylococcal antibiotics.  Every problem the patient had would be written down the same way, and often you’d find the problems interconnected.

  He also realized that the medical education system was based on stuffing more and more data into doctors’ brains, both a futile and flawed methodology.  He noted that computers could hold much more information, freeing up doctors to use their logical and methodological skills to make sense of an overwhelming amount of information.

  Imagine a Watson packed with every textbook, medical journal, medical image, clinical trial, guideline, and clinical anecdote.  And the ability, as Watson showed on Jeopardy, to correlate them and communicate their value to humans.  Imagine being able to hook up with Watson via your smartphone or iPad.  Instead of having to memorize the differential diagnosis of recurrent paroxysmal atrial tachycardia (as at one time I did) you could use your brain to do more important things, including building a bond with your patient.  I believe the future is bright, and as Ken Jennings wrote underneath his Final Jeopardy answer, “I, for one, acknowledge our computer overlords.” Or as Buzz Lightyear would say, “To infinity and beyond!”



February 15, 2011

2-14-11 Monday Day +110

Happy Valentine’s Day!  The only day of the year dedicated to love.  Shouldn’t there be more of them –  maybe a national holiday?

Status:  Feeling better each week, and despite my previous fears I can tell that I’m going to keep getting better.

Events: Big day at Hopkins – had my central line (Hickman catheter) removed – a milestone in both my clinical care and my psychological outlook!  I feel “disconnected” from the world of the sick and back in the world of the well.  That’s of course tempered with my daily meds, wearing a face mask, and need for lab checks.  My counts looked great today – reds, whites, and platelets keep increasing.

 Before they removed my catheter (“removed” is a euphemism for “yanked”), they had to check my platelet count (to make certain I wouldn’t bleed) and also my coagulation status.  Blood clotting is one of the more complicated if not most complicated process in the body.  On one hand, you want to have blood circulate freely without clotting, but be able to clot instantaneously when needed.  It’s like having a hair-trigger gun ready to fire, but never go off unintentionally.  How does the body do that?

  Normal clotting occurs, for example, when you cut yourself and damage a blood vessel.  The exposed blood vessel wall releases chemical substances that attract circulating platelets and initially plug up the hole in the dike.  The platelets release chemical factors that start what’s known as a “coagulation cascade” of a dozen different factors, each one dependent on the one before it.  It’s as if the loaded gun had the safety on, a trigger lock, and was stored in a combination safe, whose combination was in another locked box, whose key was …  hard to happen accidentally, but if practiced well, you could shoot the gun in seconds.

  The final result of the cascade is to change a soluble substance circulating in the blood called fibrinogen into an insoluble string called fibrin.  These strings form a fish net around the area of trauma trapping more platelets, red cells, and forming a stable clot.  Timely clotting won’t occur unless the cascade is carried off perfectly.  The most well-known example of a clotting defect is hemophilia.  People with the disorder are lacking Factor VIII, a defect more likely to occur in couples with common a genetic heritage (like the inbred Royals of Europe).

   One factor necessary in the cascade is vitamin K.  The blood thinner warfarin (Coumadin) inhibits Vit K and decreases the ability to clot (an important treatment in many conditions), but it requires a delicate hand in getting the right dose and frequent blood-clotting checks.  It’s compounded by the fact that Coumadin may have more drug interactions than any other medication, making it perhaps the most powerful and dangerous drug available.

  Obviously they checked my clotting status before removing my catheter.  The nurse practitioner covered the site with a heart-shaped bandage (hey, a little geeky, but it made my day as did high-fives from everyone on getting the catheter out – a real sign of progress).

  But along with the progress, we’re a still playing whack-a-mole.  My liver enzymes are up, which my oncology team believe to be medication related.  We’ve discontinued my anti-fungal medication and decreased my anti-viral. We have to go back Thursday for a check to see if that was the right call.

Comments:  Overall, I’m getting better – still requiring an occasional nap when I get up early as I did today for Hopkins.  My dysuria had disappeared, for which I’m truly grateful, but the most bothersome problem is still a dry-mouth.  I don’t produce saliva when I eat, which makes many foods inedible.  That combined with dry eyes, and dry skin suggests some lingering GVH.  The GVH team today said just to watch it for now.  We’ll see how it goes.

   We’ll report on Thursday’s visit.  Have a great week.



February 8, 2011

2-7-11 Monday Day +103

So many wonderful comments on Day 100 – you guys are the greatest!

Status:  I can feel improvement on a week to week basis – daily right now is too small an increment.  Most difficult task is getting enough calories and protein in.  Sounds like it should be easy, but it’s a challenge.  Importantly, it’s the one thing that will probably make the most difference in my recovery.

Events: Weekly check at Hopkins looked great.  All hematological numbers are up – heading in the right direction.  If all looks good next Monday, we’ll take my catheter out.

Comments:  Lisa and I have been up to Baltimore so many times we have a feel for the streets.  Two comments I’d make.  Baltimore’s tag line should be either, “City of badly improved potholes” or “Baltimore, where jaywalkers are welcome.”  The second is more than a nuisance.  As we drive through the city we continually see people actually walking across intersections when 40 mph cars have the green light, and just walking out into the street in streaming traffic.  It’s like watching a game of Frogger (not unlike George Costanza in one of the Seinfield episodes).  You cannot approach a traffic light without watching carefully for people darting out in front of you.  Today we saw about two dozen jaywalkers pass in front of us – almost ran down one.   And if you give a honk trying to warn the peripatetic young man, you get a look that could kill.  We’ve decided not to honk anymore, not in fear of a look, but of a concealed weapon.

 Which makes me want to relate a thought I’ve had for the last 2 weeks.  And please, don’t let this be an entrée to starting any political talk on this blog.  But I have to say watching the events unfold in Egypt with rock throwing, sticks, and a few Molotov cocktails, what would the protests look like if a large number of people in Egypt (as in this country) owned guns?    

 As John Lennon would say, “Love is the answer.”  Trite, but true nonetheless.



February 5, 2011

2-4-11 Friday Day +100

Yes, today is Day 100!  A milestone.  The main reason is that most of the complications of a bone marrow transplant happen in the first 100 days.  Of course, there’s nothing magical about 100 other than it fits so nicely into our decimal numbering system.  But it is a milestone nonetheless, and we are grateful we’re here to reflect on it.

Status:  I am progressing (for a while there I wondered if I’d ever feel good again).  I know that as time passes on I will.  It’s a great confidence builder.

Events: Going back Monday to Hopkins for my weekly check up.  If things look good, we’ll schedule taking out my Hickman catheter (the tubes tunneled under my chest from the outside world to my superior vena cava).  It allows for easy venous access without the necessity of peripheral needle sticks.  But if I’m only going back weekly or less frequently, it’s good to get it out.  It requires nightly flushes with heparin, weekly sterile changes in the end caps, and weekly sterile bandage changes, as well as wearing Press and Seal in the shower.

Comments:  We’ll enjoy watching the Super Bowl and resting this weekend.  And I’ll think a great deal about the love and support that has allowed me to be where I am.



February 2, 2011

2-1-11 Tuesday Day +97

Most of my attention has been on trying to gain weight (I know for most of you this is the least of your worries).   I’m getting close to Paul McCartney’s lyric from Yesterday, I’m not half the man I used to be.”  In fact, I’m now a 70 kg man (154 lbs).  That isn’t a random designation.  It turns out that almost every problem or example in science and medicine refers to a 70 kg man, “How much body water does a 70 kg man …?”  “If a 70 kg man on ice skates collides with …?”  Why 70 kg?  I don’t know, perhaps people were smaller back then.  It’s like visiting London and seeing all the suits of armor that would only fit a man 5’ 2”.  Back then, a 6-foot tall knight was imposing indeed.  Now, you have to have a lot of talent at 6 ft. to make it in the NBA.

  The first mention of a big guy was Goliath.  His battle with David is chronicled in the book of Samuel, and referred to in the Dead Sea Scrolls. That text gives his height at 6’ 9”, a giant for his times if there ever was one.  Some other writings say he was 9 feet tall, but that’s seems a little over the top.  An endocrinology professor at Vanderbilt once speculated (and the thought has been picked up by many others) that Goliath suffered from gigantism (medically referred to as acromegaly).

  Acromegaly stems from an overproduction of human growth hormone from the pituitary gland at the base of the brain.  During early years of growth people with this condition just keep growing like beanstalks (I just threw that in because of the giant living at the top).  But after puberty when the growth plates on your bones close, people with continued growth hormone start showing signs of their bones thickening (they can’t grow longer) with facial distortions.

  Perhaps the most recognizable person with acromegaly was the professional wrestler Andre the Giant (real name André René Roussimoff).  He came to this country from France, and was the first inductee into the World Wrestling Federation’s Hall of Fame (one wonders if this is actually an honor).  Perhaps many others will recognize him as the benevolent giant in The Princess Bride (I mean how can you go wrong with a cast that includes Peter Falk, Mandy Patinkin, Robin Wright, Christopher Guest, Chris Sarandon, Billy Crystal, Carol Kane, Peter Cook, Fred Savage, from the Wonder Years, and directed by Rob Reiner).

  The overproduction of growth hormone often results from a benign tumor of the pituitary.  But because of its location, things growing at the base of the brain aren’t so benign.  In particular, a tumor growing at the base of the pituitary often impinges on a sensitive place in the optic nerves as they travel from the retina to the visual cortex at the back of the brain.  The optic nerves from each eye criss-cross here at a place called the optic chiasm.  Nerves from the right visual field of your right eye go through this junction and on back to the left visual cortex, and the nerves from the right visual field of your left eye, cross over and go to the left visual cortex as well.  So your brain sees what’s going on from the right from both eyes (the reason you have stereoscopic vision and depth perception).  The same is true for your left visual field, which goes to the visual cortex on the right.  Everything in the brain seems to control the opposite side of the body.  That’s why Congresswoman Gabrielle Giffords, who had damage on the left side of her brain is likely to have difficulty with the right side of her body.

   So back to the optic chiasm.  An impinging tumor is likely to first start injuring the nerves that detect the peripheral fields of vision, both left and right.  What happens is a gradual tunnel vision, like looking through a rolled-up magazine.  The speculation is that not only did Goliath have acromegaly, but tunnel vision as well.  David approached him from the side (either side would have been his blind side) and whacked him between the eyes with his sling shot.  Goliath finally did see it coming, but much too late.

   It’s getting late here as we prepare for tomorrow’s ice storm.  I know many of you have already or soon will have to deal with ice, snow, sleet, and freezing rain. Stay warm and stay safe.



February 1, 2011

1-31-11 Monday Day +96

Getting close to that magical 100-day mark.  A quick note because it’s late, and I’ll be more expansive tomorrow.

Status:  Feeling better and think I’ve turned a little bit of a corner.  Of course, we’re talking millimeters up to the top of Everest, but headed in the right direction.

Events:  All counts at Hopkins today have increased, so much so that they say I’ve “graduated” to just once-a-week checkups, and then if all works out well, every other week, …

Comments:  My main job now is getting my strength back, not getting colds, and staying away from the ice and snow we keep getting each week.

More thought tomorrow.