3-28-11 Monday  + 5 months

Status:  Feeling better this week (it’s a wonder what prednisone can do).  My mouth, eyes, skin, and GI tract are improving, and my appetite is improving.  Much like my two bouts of chemotherapy, my bone marrow transplant left its mark on my fingernails.  This one looks like a linear scratch across my nails (much thinner and brighter than my two previous marks), and has proceeded about 2/3 up my nail.  Knowing it’s been 5 months since my transplant, I calculate my nails take about 7-8 months to grow from the cuticle to the end.  So soon the scratch will progress and fade away, hopefully with the memories of my experience with all this.

Events: My weekly visit to Hopkins.  Lab values were outstanding, and my platelets are as high as they were before I became ill.  Even my nurse practitioner said I looked good.  Hope we’ll keep seeing improvement on the steroids.  I’m taking two antibiotics, one anti-viral, and one anti-fungal while I’m on them to avoid any opportunistic infection. I’m also seeing a physical therapist twice a week to try to get back in shape.

Comments:  Steroids are amazing substances, which include the anti-inflammatory steroids (cortisone, cortisol, hydrocortisone), and the sex hormones testosterone, estrogen, and progesterone.

 All are made from the basic 4-ringed cholesterol molecule.  Cholesterol is necessary for life and is manufactured in the body from saturated fats.  A little goes a long way, but when too much is produced the body has to store it somewhere.  Of course, it turns out that sticking it into arterial walls is not a good thing.  In the chemical shorthand below, each numbered intersection is a carbon atom with one or two other atoms attached to it.  What those atoms are and where they are placed determine what kind of hormone is produced.

 You can also play chemical games by substituting your own atoms in the laboratory and create designer steroids.  If you are really clever you can make a novel steroid that no laboratory test can detect.  Enter Barry Bonds and BALCO.

  Prednisone and all the topical steroids you can get by prescription and over the counter are manmade creations, or as they used to say, “Better living through chemistry.”

  I’m looking forward to some more better living this week.

 Love,

-Bruce

3-21-11 Monday  + 4  3/4 months

Status:  It’s been a tough 2-3 weeks, loss of appetite, dry mouth, skin and mouth lesions – all the result of graft vs. host disease.

Events: At Hopkins for my weekly checkup and talk with my lead oncologist.  First question I asked is what the bronchoscopy showed.  He held up his hand, thumbing touching his other four fingers in the classic “zero” sign.  Nada. Nothing.  The bronchial-alveolar lavage (squirt water down and suck it back up) didn’t provide any fungi or even markers for fungi, no viruses, no bacteria.  Zilch.  Biopsy just showed some inflammation but nothing specific. 

   Although you’d like to find something and solve the puzzle, finding any of the above things wouldn’t be good, so this was actually welcome news.  First, the treatment for this non-specific pneumonia is steroids (prednisone) to tamp down the inflammation, and second prednisone is the treatment of choice for chronic GVH.  So, we may be able to kill two birds with one corticosterone.

   I’m starting on low-dose prednisone, which will continue for 8-12 weeks and no doubt stimulate my appetite, clear up my skin and mouth lesions, and perhaps clear up my lungs.  During that time they’ll be checking my pulmonary function tests and chest x-rays to make sure we’re headed in the right direction.  I’m still on antibiotics, anti-fungals, and anti-virals to cover me for the immune suppression that comes along with steroids.

  Lisa had to make out an Excel spreadsheet for the day detailing times for medications, mouth care, eye care, skin care.  In between, I have to find time to eat, exercise.  As my oncologist said today, “That’s your full-time job.”  

Comments:  Electronic medical records make it possible for my doctors, nurses, and consultants to see what’s going on with me, and undoubtedly will contribute greatly to my medical care.  But it comes with a cost.  That cost is security.  My doctor’s name is J. William Smith (not his real name) and he goes by Bill Smith.  A summary of my medical findings, x-rays, bronchoscopy results, etc. go to Dr. Bill Smith.  But Hopkins electronic records database contain 3 Dr. Bill Smiths, one in Laurel, Maryland, and another in Pennsylvania.  Apparently they’ve been getting strange medical records on a patient they’ve never heard of, for some time.  Of course, if I’m ever in Laurel, they’ll have all my stuff.

  Next visit, next Monday.  Hopefully I can report I’m feeling better.

 Love,

-Bruce

3-16-11 Wednesday  + 4 ½  months

Too many consecutive days at Hopkins.

Status:  Got through my bronchoscopy without puncturing a lung, bleeding, or dying – the 3 major warnings I got to hear 3 times before signing the informed consent form.  Did come home with a whopping sore throat, the one thing they guaranteed would occur.

  Events: First saw the pulmonary fellow, and after going over the CT scan with her, I asked, “What do you think it could be?”  She replies, “With you, it could be anything.”

  I can tell you about the before and after, but I don’t remember anything about the procedure – I was given propofol.  The words that came to mind were the first lines of T.S. Eliot’s The Lovesong of J. Alfred Prufrock.   

Let us go then, you and I,
When the evening is spread out against the sky
Like a patient etherised upon a table;

  The pulmonary folks said they didn’t find anything specific, but performed a bronchial-alveolar lavage (squirt water down and suck it back up) and took some biopsy snips.  We await the results.

Comments:  I kept going back to Eliot:

I grow old … I grow old …
I shall wear the bottoms of my trousers rolled.

Love,

-Bruce

3-15-11 Tuesday  + 4 ½  months

Your comments are so clever and uplifting.  Laughter is indeed the best medicine.  I frequently have to administer eyedrops, which involves a whole routine of getting Kleenex, lying down, taking my glasses off.  Several times I can’t find where I laid my eyeglasses, only to discover I had already put them on.  I laugh at myself each time.  Thank goodness there’s some humor in all of this.

Status:  Dry eyes aren’t quite as troublesome as dry mouth, but fortunately I saw the ophthalmologists today.

Events: First seen by a technician who took me through the regular exam: visual acuity, colorblindness tests, ocular pressures checking for glaucoma.  Then seen by a Fellow, who did more extensive tests: viewing retina, cornea, and conjunctiva, and a special exam called Schirmer’s test, in which they place paper strips against the lower eye for 5 minutes to see how much tear production you have.  I had none, which officially documented my dry eye problem.

  Next came the attending physician and two doctors from Brazil, visiting the famous Institute for educational purposes – everybody got a look see.  After confirming that GVH was responsible we talked about a solution.

 Chronic GVH damages your tear glands (the same phenomena that occurs in my salivary glands and subsequent dry mouth) and decreases tears.  My immune system sees my tear glands as foreign and attacks them.  The treatment is two-fold, one is to use immune blocking eyedrops, in this case Restasis (you’ve probably seen their ubiquitous TV commercials), which is an optical solution of the anti-rejection drug cyclosporine.  Cyclosporine was the breakthrough that made early kidney transplants possible.  Hopefully that will stop the immune attack and allow the tear glands to work.  The second is trying to keep the eye moist by plugging up the drain and not let whatever tears are made runoff.

  If you look in a magnifying mirror at the inside of your lower eyelid nearest to your nose you’ll see a little hole called the punctum.  That’s where tears drain down the tear ducts and outlet through your nose (the reason your nose runs when you cry).  You also have the same puncta (remember your plural Latin) on the upper lids, but they’re hard to see.  They inserted tiny plastic plugs to keep whatever tears are made where they are.  The ophthalmologists were informative, considerate, and caring.  It’s a nice clean job, and patients are invariably grateful.

Comments:  Talked with my oncology team today about the lesions in my lung.  They want to know exactly what they’re dealing with (a common fungus resistant to the anti-fungal I’m on, a rare fungus, or maybe something all together different).

   So tomorrow I get up very early to see the pulmonologists and have a bronchoscopy.  A bronchoscopy is accomplished by putting a tube down into your lungs and taking a look and perhaps snipping a sample of tissue.  It’s done while you’re awake, and I’m not looking forward to it.  But it’s the only way to know what we are doing.  The moles keep popping their heads up.  I’ll probably be pretty spent by tomorrow afternoon, but I’ll try to let you know how the day went.  I do keep laughing at how many orifices they’ve found.

Love,

-Bruce

3-14-11 Monday  + 4 ½  months

Happy pi (π) day.  More about that in comments.  It’s been a while, simply because I was given 10 days off between visits to Hopkins.

Status:  Felt a little crummy this last week, loss of appetite, GI problems, dry mouth, oral thrush, more skin rashes – all due to graft vs. host disease.  Luckily, today’s appointment was set up to talk with the GVH guys.

Events: Good news was that hematological values keep improving, platelets now at 100,000 and going the right direction.  On the other hand, my lung CT scan showed some progression of what they think represents fungal infection, most likely with Candida, the same organism that causes vaginal yeast infection and thrush in the mouth.

  Orifices of the human body (mouth, vagina, etc.) are not sterile places.  Those openings are colonized by millions of micro-organisms in a complex but balanced ecosystem.  The organisms live together in harmony, much like animals on the African plain, competing for space, nutrients, and the like.  No one organism dominates.

  But change the ecosystem, like depressing the immune system, or taking antibiotics that kill off only the bacteria, allowing the fungi to start to overgrow, and the balance is gone.  Given my history of immune suppression and multiple antibiotics, a fungal overgrowth isn’t much of a surprise.  The problem is that I have been on a potent anti-fungal drug (voriconazole) for 6 months or so, which should have done the trick.

  Compounding that is that the GVH docs would like to start me on low-dose daily prednisone to deal with the chronic GVH.  Steroids are probably the last thing you’d like to give to a patient with a fungal infection.  So how do you deal with two significant problems with two opposite solutions?  The team is putting their collective heads together tomorrow.  The answer, like many of the answers during my course, will not be based on any medical evidence from scientific studies (no one has taken 1000 patients and tried one regimen on one half and the alternate regimen on the other half), it just relies on experience, convention, bias, and guess work.

  But creativity can provide some new avenues.  I’ve been dealing with oral thrush (yeast infection in the mouth) for several weeks.  We’ve tried to old standby (perhaps 50 years old) of swish and spit oral Nystatin (mycostatin) solution, a mild antifungal medicine.  It usually works with mild yeast overgrowth, but mine has proven problematic.  It would great if we could add another more powerful antifungal drug, like fluconazole, to the mix, but these antifungal drugs are toxic to the liver, and taking fluconazole and voriconazole together is a recipe for disaster.

  So I asked if fluconazole came in an oral solution (often used for pediatric or geriatric patients).  We looked it up, and it does.  I said why not use it as a swish and split.  No one had thought of that before (and I imagine it’s not approved for such use).  Lisa later asked me why no one had ever come up with that idea, and I said, “Because I’m smarter than the average bear.”  The prescription for an oral solution was given to our local pharmacy, and although the pharmacist said it was approved by our insurance, he was hesitant to fill it, because the dose, which he thought was for ingestion, was way up in uncharted territory, and it would have been if I had actually swallowed it 4 times a day.  He called Hopkins, they explained what the deal was, and he was relieved.  Good for him –an alert pharmacist.

Comments:  I can’t leave today’s visit without talking about my nurse practitioner who coordinates my care, and who saw us today.  She (and you might have noticed that I have never identified any of my caregivers by name) is and has always been empathetic and caring.  Throughout our chats, she’ll put a comforting hand on my knee, a quiet touch on my arm, and always a real hug at the end.  She lets me know that she’s focused on me, knows what I’m going through, and wants to help get me better.

  She exemplifies what I used to teach physicians about communicating with patients.  When the patient comes in and announces the reason for the visit (what doctors call the chief complaint) the first response should not be, “When did it start?” or “How long does it last” but with, “That must be awful!” followed by, “Let’s see how we can deal with that.”  Now the patient knows the doctor cares about him or her (and not the intellectual exercise of determining a diagnosis) and that they’ll be working together to fix the problem.

Special comment:  March 14 or 3-14, is celebrated in schools as π day (3.14).  Now, pi itself (most famously the ratio of the circumference of a circle to its diameter) goes on as 3.1415926535897 … to infinity.  It comes up in mathematics not just in circles, and spheres, and cylinders, but in physics, biology, and almost every other field of study. If you throw a toothpick on lined notebook paper, the probability that it will land on a line is 2/π.   And somehow it has integrated itself into our numbering system, for example, pi = 4/1 – 4/3 + 4/5 – 4/7 + 4/9 – 4/11 + … Mathematicians still have no idea why it should work like that.  

   In college, just for fun, I memorized pi to 250 decimal places (betcha, you did more fun things in your 4 years).  But at our last class reunion, I still could remember it to a little more than 150 places, and my fraternity brothers pledged to donate a dollar a digit to the scholarship fund.  We raised $6,000, not bad for a slowly deteriorating memory

  Back at Hopkins tomorrow for a quick visit with the ophthalmologist about my dry eyes.

Love,

-Bruce

  

3-3-11 Thursday  + 4 ¼ months

Status:  A little tired this afternoon because we had to get up early for a visit to Hopkins, but overall feeling better.

Events: Lab checks were great. Platelets (the canaries in the coal mine) keep increasing, as does my hematocrit and neutrophil count.  Liver enzymes are coming down, and my skin is getting better, so it looks like this was a transient case of GVH, although still dealing with dry mouth and dry eyes.  To make sure we’re covering everything, I’ve been put on a 10 day course of Zithromax.  I found out to my distress that it shouldn’t be taken on an empty stomach!

Visited yesterday by a friend who had her own bone marrow transplant 7 years ago.  It was good to share experiences.  Had some good ideas about diet and exercise, but best of all the kids got to see a healthy person, and heard that it takes 1-2 years to be back to normal.  She also said that I was doing better than she had done at the same time period.  I’m sure that eased some of the kids’ concerns after seeing a sick Dad every day.  We both shared the fact that being away from Hopkins (our security blanket) at first was disconcerting, but now going back is a nuisance – a good transition.

Comments:  Every week or so Lisa and I make a journey to Hopkins.  The word “journey” comes from the root jour meaning day.  A journey way back when was how far you could go in a day and get safely back home.  George Carlin had a wonderful routine about the differences between baseball and football.  He said the object of baseball was to get safely back home.

At one point in my life, I was involved in a very long journey.  I was a Senior at MIT and allowed to enroll in a graduate course in Space Systems Engineering.  The entire course was to plan and execute an extraordinary space mission.  We had learned that within the next decade the planets in the solar system would line up in such a way that a properly aimed spacecraft could use each planet’s gravitational force to swingby the outer planets in what was called the Grand Tour.  I was in charge of computing the orbital trajectories since I had learned to program IBM main frame computers in high school.  What you have on your laptop now is more powerful than the huge room of machines I was working with.  We were invited to make a presentation to the big wigs at NASA, and in 1977 the Voyager 1 spacecraft was launched, and later the Voyager 2 taking extraordinary pictures of Jupiter, Saturn, Uranus, and Neptune, and their moons.

By 1990, it had reached the outer extent of the solar system, and Carl Sagan (a personal hero, and a person gracious enough to give my Mom and Dad a bottle of champagne on their anniversary) requested that NASA command the spacecraft to turn around and take a photograph of Earth across a great expanse of space.

 These are Carl’s words from his wonderful book A Pale Blue Dot:

“The spacecraft was a long way from home, beyond the orbit of the outermost planet.   The ship was speeding away from the Sun at 40,000 miles per hour.  But it was overtaken by an urgent message from Earth.

Obediently, it turned its camera back toward the now-distant planet, focusing on one spot in the sky.  It snapped the picture and stored it on its digital tape recorder.

Then slowly, it radioed back its data to Earth.  The spacecraft was 3.7 billion miles away, so far it that took each pixel 5 1/2 hours, traveling at the speed of light, to reach us.

 We succeeded in taking that picture from deep space, and if you look at it you’ll see a dot.  Because of the reflection of sunlight off the spacecraft, the Earth seems to be sitting in a beam of light, as if there is some special significance to this small world.  But it’s just an accident of geometry and optics. 

Look in the middle of the right most band of light

Look again at that dot.  That’s here.  That’s home.  That’s us.  On it everyone you love, everyone you know, everyone you ever heard of, every human being who ever was – lived out their lives.

The sum of our joys and sufferings, thousands of confident religions, ideologies, and economic doctrines, every hunter and forager, every hero and coward, every creator and destroyer of civilization, every king and peasant, every young couple in love, every mother and father, inventor and explorer, every teacher of morals, every corrupt politician, every “superstar,” every “supreme leader,” every saint and sinner in the history of our species lived there – on a mote of dust suspended in a sunbeam.

The Earth is a very small stage in a vast cosmic arena. Think of the rivers of blood spilled by all those generals and emperors, so that they could become the momentary masters of a fraction of a dot. Think of the endless cruelties visited by the inhabitants of one corner of this pixel on the scarcely distinguishable inhabitants of some other corner.

There is perhaps no better demonstration of the folly of human conceits than this distant image of our tiny world.  To me, it underscores our responsibility to deal more kindly and compassionately with one another and to preserve and cherish that pale blue dot, the only home we’ve ever known.”

Love,

-Bruce