6-14-11 Tuesday  + 7 ½ months

Status:  It’s been a week and a half since my last posting, and I’m improving especially with my blood sugar management.  Gaining some strength with PT, doing some specific isolating muscle exercises.

Events: Up at
Hopkins yesterday for lab checks, lumbar puncture, and visit with graft vs. host doctors.  Still have some signs of GVH, and they want to keep me on steroids.  I was hoping to taper them off in order to rid myself of these high blood sugars, but I’ll have to deal with a while longer.  My docs cautioned me about referring to it as “diabetes”, since you’re likely to get labeled with that diagnosis on your charts – it’s merely “steroid-induced hyperglycemia.”

I learned an interesting fact.  For quite awhile, I’ve been bothered by painful, little, blister-like lesions in my mouth.  They become most prominent when I eat, and then they disappear.  I thought it was GVH and irritation from eating.  But I got a knowing smile from the docs.  They are blocked saliva ducts.  So I do produce some saliva, but it can’t get out because the openings of the ducts have been scarred over.  The same reason I have dry eyes – the openings of the tear ducts have been closed shut, probably a permanent condition.

And let me describe the usual procedure for my lumbar puncture (spinal tap).  A needle is inserted between the spaces of the vertebral bodies (your spine).  Each of the vertebrae is given a name and a number (just like your dentist has a number for each of your teeth).  The vertebrae in your lower back are called the lumbar vertebrae and are numbered downward as L1, L2, L3, L4, and L5.  The spaces in between are called L1-L2, L2-L3, etc.  Fortunately the spinal cord only goes down to the L1-L2 interspace, so you can put a needle below that level without worrying about hitting the spinal cord.

 

Mine are done in the fluoroscopy lab for exact placement, where I lie on my stomach as they prep the site with alcohol, and numb the spot with some lidocaine.  After inserting the needle and making sure they’re in the right place, they take out about 7 mL of spinal fluid for testing (looking for any abnormal cells – never found any) and inject 2 mL of chemotherapy.  This was my 4th of 6th prophylactic doses.  Only 2 more to go, each a month apart.

Now, we have found from previous experiences that the only spot that works for me is the L2-L3 space (I’ve had previous back surgery), so we go in there every time usually without a hitch.  I, of course, told this to the fellow doing the procedure, who said, “OK.” But the stick didn’t go well.  About 45 minutes of trying, moving the needle, more fluoroscopy, and causing some bleeding.  I asked what the problem was, and was told it wasn’t going well, and they would try another interspace.  I said that was unusual since the L2-L3 spot usually worked fine.  They said, “Oh, we didn’t go in there, we went to L4 since it looked like a wider opening.”  Arrrrrgh! What part of “listen to your patient” did you not get!”

Now what should have happened.  They – “We’re going lower cause it looks better.”  Me – “No, only L2-L3 works, let’s stick with that.”  That episode won’t happen again.  I made the rash assumption that a contract had been executed.  I made a knowledgeable suggestion, and it was agreed to with an “OK.”  What happened was a doctor changed the agreed-upon procedure based on her “better judgment” without informing the patient.  This is an absolute “No-no.”  It destroys the trust in a doctor-patient relationship (even a brief one) and usually results in worse patient outcomes.

Attempts at L2-L3 (re-numbing, re-sticking, etc.) were successful, although having blood in the spinal sample ruins the accuracy of some the lab tests we had gone to all the trouble to do.  The neuro-radiology team did not cover themselves with glory, and that particular fellow has a lot to learn about taking care of patients.

Comments: The lesson here, which I seem to have to learn over and over again, is that even in the most proficient hands, and even over well-trodden ground, you have to be vigilant each and every time you put your life and limb in harm’s way.

I have to go back next week for an eye checkup (Restasis has helped my dry eyes greatly).  Talk to you then.

Love,

-Bruce

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9 Responses to “”

  1. Lewis Lefkowitz Says:

    YOU’VE REMINDED ME OF THIS STORY
    :
    On an evening of the week before Christmas, a man was entering a department store to do his shopping. He saw a man on his hands and knees outside the store and asked him what he was doing. The man, who appeared slightly intoxicated, said, “I’ve lost a dime, and I=m trying to find it.” Hours later, the shopper came out of the store laden with his packages, and saw the same man in the same position, still looking for the dime. He asked him, “Haven’t you found the dime yet?” The searcher said no. In the spirit of the Season, the shopper put down his packages and asked, “Where did you lose it, maybe I can help.” The man replied, “I lost it over there,” and pointed to a dark corner of the street some distance away. “Why are you looking here, then,” the shopper asked. The searcher replied, “Because the light is better here.”

  2. joel steinberg Says:

    You really don’t want to do an LP at a previously operated level. The incidence of a mishap is much greater–twinging a nerve root, bloody tap, post-tap spinal headache, etc. I used to run into this kind of nonsense a lot. And even when you tell people what not to do, they do it anyway, causing the patient and themselves mucho aggravation. But all this is child’s play compared to what you’ve been through. Your news is good. Joel and Margaret S.

  3. Bill Israel Says:

    After a year of how much abuse can you and the family take, it’s nothing short of remarkable to be getting steady reports of progress, Bruce — and the sense that even with setbacks, you continue to get better, and look forward to more. We can hardly wait to celebrate with you, and urge you folks on!

  4. Andrea Tuttle Says:

    So glad to hear you don’t actually have ” diabetes” One doc wants to make sure you got it right and the other can do no wrong. Very humbling experience all the way around. Love the graphics, you are getting too good at this. Glad for your blessings too.

  5. Henry Miller Says:

    Any chance an oral surgeon could do something to make the salivary ducts patent? Maybe insert small plastic tubes?

    So many people have gotten chemotherapy for so long, one would think that various interventions have been tried…

  6. Dr Bill Schaffner Says:

    Bruce:
    Really great news of your good progress. At the same time, really a bummer about your episode with the neuroradiologist. I can’t help wondering about people who choose a specialty where they spend all their time in the dark doing procedures on patients whom they barely know. Doesn’t reinforce your communication skills…
    Thought you might be interested in a couple of CDC- related events. I was there last week to give a brief “graduation” talk to their latest group of Applied Epidemiology Fellows – medical students who take a year at CDC between 3rd and 4th year. The group of nine gave classical 10-minute presentations of one of their investigations.
    They were all fabulous – clear CDC-style presentations and even more impressive was their ability to remain genial and unflappable in fielding (and sometimes evading) questions. Remarkably mature, pleasant, bright, and sufficiently interested in public health to keep it as a feature of their future careers, no matter what they eventually decide to do. Very heartening. Pfizer supports the program via the CDC Foundation. I’m sure that it’s not cheap because the CDC devotes considerable resources to it – and it shows in the quality of the students and their projects.
    By coincidence, that afternoon there was a memorial event in honor of David Sencer. I had just enough time to attend before my flight back to Nashville. It also was remarkable. The audience was awash in grey hair – the CDC seniors come back to pay their respects. Saw lots of old (literally) friends. Tom Frieden, Bill Foege, Don Millar, Jim Curran, and others said lovely things. I had not realized that Dave Sencer was the longest serving CDC Director. The fondness and respect for him was palpable.
    In a couple of weeks, one of the new CDC auditoriums will be named in honor of Alex Langmuir – a much more complex person. Have you read Inside the Outbreaks by Mark Pendergrast (Houghton Mifflin Harcourt, 2010)? A quasai-history of the EIS, it has some revelations about Alex. You’ll enjoy it.
    Love to Lisa – keep up on the progress!
    Cheer,
    Bill

  7. Ashby Says:

    Nothing to silly to say on my part. I hope you aren’t disappointed, but perhaps you are relieved. Just hoping on this end for steady progress on your end.

  8. Gail Lehmann Says:

    Bruce,
    Mark was diagnosed as diabetic a year ago. We met with a nutritionist and she helped us set up a “carb” food plan. He is now dropped to “pre-diabetic” with managing his diet (6-7 meals a day), losing 20 lbs (not your problem) and exercising.
    TRY DREAMFIELDS PASTA which I found on the diabetic website and is low glycemic and delicious.
    Keep up the good work.
    Love,
    Gail

  9. Leslie and Family Says:

    Bruce,
    Always glad to hear about your improvements at each visit. Hope to see you soon 🙂

    Leslie

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