Archive for July, 2011

July 19, 2011

7-19-11 Tuesday  + 9 months

Status:  Improving and feeling better after the GVH flare up.  Still with some resolving mouth issues, but they too are improving. 

Events: At Hopkins yesterday for #5 of 6 prophylactic injections of chemotherapy into the spinal canal, and a visit to the GVH docs.  Lab numbers looked good.  Got a prescription of oral swish and spit steroids, a swish and swallow anti-fungal, and some viscous lidocaine (syrupy novocaine) to coat and numb my tongue (add 3 more to my list).

  I went down to the radiology suite for my lumbar puncture (suite isn’t quite the right word for the universally dim basement radiology corridors that look like they are discarded sets from old Harry Potter movies) and met the doctor who was going to perform the procedure.

 Realizing this was July when interns, residents, and fellows turn over (everybody is new), I asked who he was and where he was along the path.  He said he was a 1st year fellow, meaning he had just completed his residency and was just learning neuro-radiology.  I asked him how many of these procedures he had done.  He was silent for a moment and then said, “I’ve done some.”  I kept looking at him, and he said, “A few.”  I was looking for a ballpark figure … a dozen, 20, 50?  Then he says nervously, “I really haven’t kept count.”

 This was not the answer I was looking for.  Better would to have said, “Well, not as many as I will have done at the end of the year, but you’ll have no problem, and Dr. _____ is here (the attending physician) who’s done more than you can count.”

 As it turned out, I was glad the attending was in fact in attendance.  I re-iterated that he should put the needle in at the L2-L3 interspace and just tell as he went along what he was about to do.  Well, that worked for about a minute.  He did say that I’d feel a sting a bite from the numbing skin injection, but barely a hint thereafter.  Was that him marking a spot with his pin or was the LP needle going in.  Since you are lying face down on your stomach, the only inputs you have are sensations from your back and the conversation between those doing the procedure.

  After 45 minutes of continual coaching from his senior, it was obvious he was having a difficult time.  And at last the attending said, “Let me try.”  Those were welcome words.  Within a few moments the needle was in the right spot and collecting spinal fluid.  One of my nurse practitioners came in and expertly infused the chemotherapy, and off I went on a gurney to lie flat for 2 hours (helps prevent post-LP headache).

Comments: One of the hardest things to say in any endeavor is, “I don’t know.”  To be comfortable with feeling that you don’t have all the answers, and to realize that the best response is not to substitute some b.s. to try to smooth things over, but to search for the answers.  One of my heroes, Nobel laureate Richard Feynman said,   “The first principle is that you must not fool yourself, and you are the easiest person to fool.”

  An ancient Zen Monk named Zuigan used to start every day looking into a mirror and saying to himself out loud: “Master, are you there?”  And he would answer himself, “Yes sir, I am!”  Then he would say, “Better sober up!”  Again he would answer, “Yes sir! I’ll do that!”  Then he would say, “Look out now; don’t let them fool you!”  And he would answer, “Oh no, sir, I won’t!  I won’t!”                                                                         

 I’m doing well enough that my next scheduled checkup is next month, but I’ll keep you up to date every week until then.

Love,

-Bruce

July 13, 2011

7-13-11 Wednesday  + 8 months

Status:  Dealing with a flare of GVH, mainly mouth, lips, and tongue – negotiating pills, food, blood sugars is more than a full-time job.

Events: At Hopkins yesterday for an endoscopy to investigate my difficulty swallowing.  The day was somewhat complicated by the fact that I could have nothing by mouth after midnight, which made for some fancy dancing in regard to morning blood sugars and meds.  Luckily the procedure was scheduled early but necessitating us leaving at 6 AM to drive to Baltimore.

 After registering, you exchange your clothes for two gowns (one traditional gown – expose your tush with back ties – and another you put on like a jacket to cover the back).  Works well for both etiquette and warmth.  Why doesn’t everyone do it?

 They insert an IV line and use Propofol as anesthesia, which has the advantage of being short-acting (the effects stop in just minutes if you stop the medication), but still had 4 people watching me, and hooked me up to a monitor for blood pressure, pulse, blood oxygen levels, and gave me nasal oxygen. [None of which were available to a more famous person given Propofol].

 Knowing about my blood sugars they took a fingerstick beforehand, and even coated the mouthpiece you wear (like a snorkel mouthpiece) with novocaine gel because of my chapped lips.  The mouthpiece is really there to prevent you from biting through the expensive fiber-optic endoscope.

 As I expected, they found a stricture (narrowing) of the esophagus about a third of the way down.  The endoscopist, a professional with a great bedside manner (she did a previous procedure on me for GI bleeding), said she couldn’t even get the endoscope through it.  She used a balloon to expand the opening, and now swallowing is much easier.  If I have more trouble it’s easy to do it again.

 Stayed on a liquid diet the rest of the day, still navigating food and blood sugar seas, and now moving on to soft foods. The dilation is a big help when taking the big pills that populate my 28 tablets and capsules daily.

Comments: Next visit on Monday for the 5th of 6 post-BMT lumbar punctures.  Hope to be feeling better by then, and hope you enjoy a cooler weekend.

Love,

-Bruce

 

July 11, 2011

7-11-11 Monday  + 8 months

Couldn’t help responding to good friend Dr. Rick Davidson’s comments about today’s medical residents and the way it used to be when we served as house staff together at Vanderbilt.

  We rotated thru 4 hospitals to give us a breath of experience: Vanderbilt University Hospital (generally more complicated, esoteric, and mysterious cases), VA Hospital (lots of liver and lung pathology – read alcohol and tobacco), the private upscale St. Thomas hospital, and the public Nashville General Hospital (affectionately called the “Nasty General”).  There was much less supervision at the General, and consequently much more responsibility.

  Two episodes I remember vividly (not forgetting for a moment all those Friday nights in the ER).  One was a older man who came in with dangerously high levels of potassium (it’s also what’s put in the IV used to stop the heart in lethal injections).  I asked my resident what I should do, and he said, “If I were you I’d get it down.”  So for the next 6 hours in the middle of the night I was all alone, looking up everything and doing everything I could to get it back to near normal.  I finally stabilized the patient without knowing that my resident was calling the nurse about every hour checking up on me and ready to intervene if I had lost my way.  A good confidence builder.

 Later as a more confident resident I was assigned to the screening clinic (affectionately called the “Screaming Clinic”).  It was flu season, and we took all comers (“come on in, sit right down”).  I think my record day was 130 patients.  I had already written several hundred prescriptions for decongestants, anti-histamines, cough syrups and the like, and after an all too brief check of their lungs (to rule out pneumonia), heart (rule out heart failure), examining their throats and lymph nodes (rule out strep throat, infectious mono, and the like) I’d just tear off a sheet from one of the prescription pads for each of their symptoms.  I didn’t think any of those nostrums would help a cold or the flu, but a kind word, “I hope you feel better,” and a promise of continuing care, “Come back if it’s not better in a few days,” I hoped made them feel that their discomfort was addressed.  It was conveyor belt medicine, and of course if you had an inkling something else was going on, you’d order some tests and follow them up. But I’m sure seeing hundreds of patients each day for weeks, I made some mistakes.  I just spent the days trying not to get sneezed on.

  Today’s New Times has an article about one medical school’s attempt to sort out from its applicants more empathetic, thoughtful students.

http://www.nytimes.com/2011/07/11/health/policy/11docs.html?hp

  When I applied to med school, one of the sections on the MCAT entrance exam was on general information (the arts, history, literature), an attempt I believe to find well-rounded students, not just those who had their noses buried in a biochemistry book.  Sadly they dropped that section soon afterward.

  I took the MCAT again about 20 years later and wrote an editorial in JAMA critiquing that decision and other changes that I thought were not productive.  We’ve now constructed a system that favors the high brain-powered student who can make the best GPA regardless of whether that person could make the best doctor.     

I’m a Hopkins tomorrow for an endoscopy – will let you know the results.

Love,

-Bruce

July 7, 2011

7-7-11 Thursday  + 8 months

Always appreciate the comments – erudite, clever, supportive.

 Status:  Spending most of my days dealing with the routine of taking meds, watching blood sugars, and fixing special meals.  It is indeed a full-time job.

Events: At Hopkins this week for a rescheduled eye check.  Restasis eye drops have been of great help, and I actually make a few tears -tested at 20/25 vision.  Enjoyed chatting with my ophthalmologist (a specialist in graft versus host disease and dry eyes).  We joked that this was the first of July with new residents.  He said he could always tell how the group would be when he lets them decide their own call schedule.  Last year’s group finished in 15 minutes and went out for a beer.  This year’s group took 2 hours – looks like he has his work cut out for him.

  He also talked about how things have changed for these “millennials.” We had both  worked in “every other night” residencies, meaning 36 hours on, 12 hours off, 24/7, for 3 years (when giants walked the Earth).  Of course, we were sleep-deprived, irritable, and mistake prone, but the old saying that the only problem with an every other night program was you missed seeing half the patients.  Now residents have limited work hours, and when it’s time to go home that’s what they do.

  His other interesting take, which I have heard from a number of folks about kids this age, is that there is a sense of entitlement, an ethic that everything a young person does deserves a prize.  He mentioned a recent cartoon showing a young boy running to his mother with a gigantic trophy yelling, “We lost!”  He mentioned a resident he had to have a chat with who wasn’t doing so well. The resident was flabbergasted and in tears because no one had ever been critical before.

 My own anecdote about this generational disconnect occurred when I was giving a course on investigating a food-borne outbreak to a group of new Price-Waterhouse hires.  The purpose was to take them out of their skill set and learn how to think, organize and analyze.  I had given them all the data, and asked them to set it down in an organized fashion (names, ages, day of illness, foods they had eaten, etc.) The entire class of 100 just sat there, and I said, “You can start now.”  No one moved, finally a hand went up, and a young woman said, “We didn’t bring our laptops so we don’t have our Excel spreadsheets.”  I wonder how they’d do on Survivor without laptops.

  And I’m reminded of the famous quote:

“The children now love luxury; they have bad manners, contempt for authority; they show disrespect for elders and love chatter in place of exercise. Children are now tyrants, not the servants of their households. They no longer rise when elders enter the room. They contradict their parents, chatter before company, gobble up dainties at the table, cross their legs, and tyrannize their teachers.”

   It is attributed to Socrates, 2,500 years ago. Plus ca change, plus c’est la meme close.

 

Comment:  They’ve changed my barium swallow scheduled for next Tuesday to a direct look with an endoscope.  If they find a stricture accounting for my difficulty swallowing (smart money is on that) they may be able to dilate it right then – that would be a relief, but I bet I’ll be a little sore.  Wish me luck as we smack down one more whack-a-mole.

 Love,

-Bruce

 

July 2, 2011

7-1-11 Friday  + 8 months

Status:  Doing OK.  Gained about 5 lbs. Still fiddling with my blood sugars, and plan to talk to a diabetologist for some sage advice.  Having some difficulty swallowing and have scheduled a Barium swallow to see what’s going on.  Didn’t intend to attempt a Guinness Book of World Records for most lab tests and procedures obtained at a hospital, but it looks like I’m in the running.

Events: At Hopkins yesterday for a lab check.  Everything looks stable, but one big surprise.  Given this atrocious diet I’m on – eggs, butter, whole milk, ice cream I asked they do a cholesterol check.  I’ve always had a tad high cholesterol with a low HDL (good cholesterol) and high LDL (bad cholesterol), and I expected to markedly worse.  Low and behold, I come back with and HDL of 80 (over 60 is good) and an LDL of 90 (under 100 is good).  Maybe Dr. Atkins was on to something.

Comments: Learning stuff all the time.

Next visit next Tuesday for rescheduled eye check.  Talk to you then.  Have a great July 4th weekend..

Love,

-Bruce