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

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12 Responses to “”

  1. Andrea Tuttle Says:

    Can’t wait for 3.14.15 Hope it’s piece of pi for you.

  2. Judy and Lewis Lefkowitz Says:

    Egad! 150 places after the dot. We are in awe.

  3. Jill Stewart Says:

    My eyes are never dry after reading one of your updates. Jill

  4. Judy Freedman Says:

    Yes, you are smarter than the average bear! I would expect you to come up with the alternative taking fluconazole in an oral solution. Hoping that does bring you relief and a successful outcome.

  5. Bill Israel Says:

    Bruce – you’re the only human I know who consistently uses himself and his condition to the best possible advantage for everyone involved. Closest I’ve come to doing that was to use the fire in my apartment complex as an exercise in police reporting for beginning reporters. That’s a mighty poor third cousin to the wonder you manage to work in us all as you bob and weave over hurdle after hurdle, and creatively. What a pleasure, and what a reward, to be involved in your life. And wait ’til you see Eileen’s glow from your passage on your nurse practitioner! Big Hugs from us, and to Lisa and the kids. -Bill

  6. Laurie Samuels Says:

    Missed your blogging this last stretch…. find myself checking each day for a progress report anyway! Numbers continuing to climb is great news. But
    DAMN that yeast…. Continuing good wishes for feeling better and better. Love, L.

  7. joel steinberg Says:

    Yay for Pi day. Margaret and I were so impresses by your performance at the last reunion. We’re sorry you are having these treatment dilemmas. Keep at it. Joel

  8. Margot Says:

    Smarter than the average bear is right! Hope it works! Sorry you were not up for celebrating that brain of yours with a bit of pie. I learned about the day from Michele and we both had a bite of lemon meringue before midnight. Keep going and going and going….

  9. Tom Linden Says:

    I keep learning more intriguing tidbits about your life past and present. Now I find out that you have a huge memory bank and are concocting pharmaceutical treatments that even the oncologists haven’t thought of. Bruce, you’re amazing.

  10. wendy Says:

    About 40 years ago I went to have an eye exam in a new city. I told the doctor that I didn’t make tears. He said, I was wrong. We all make tears and to prove me wrong he stuck that strip in my eye. After a painful minute he took it out and said, “hum.” Then he proceeded to stick it back in. Ouch. Then when he removed it and it was still completely dry he said, “you are right, you don’t make tears.” I often wonder what benefit he thought I’d get in lying about that. Having moved to San Diego in the last decade and going to an eye doctor here, I have had restasis and the plugs. Nothing really worked. I don’t use drops because my body norm has always been this way and the drops only irritate the problem. However, I discovered the most unique experience with my eyes at the dentist office of all places. When he gave me novocaine (or whatever he was using)in the upper back region of my mouth, I noted that my eyes teared up. For me means that my eyes felt moist. No tears have ever overflowed down my cheeks. I mentioned it to the eye doctor and he said, “Interesting, but didn’t have an answer as to why.” So smarter than the average bear..perhaps you could figure out what caused that and perhaps it’ll help your condition. BTW, you Dad also has dry eyes. It’s a family thing. So sorry that you continue to have to deal with the moles. I think it’s time for things to settle down and I suggest the prayer chain put that out to the universe. Meanwhile, humor is always a good medicine.

  11. Bill Schaffner Says:

    Bruce:
    Happy Ides of March!
    Sounds as though you are hanging in there, wrestling with your bioburden. As you said, when you mess with the natural ecology, the yeasts will sneak up on you. Which made me wonder about the Nystatin “swish and spit” regimen. Didn’t we used to “swish and swallow”? The notion being that you could get thrush down beyond the mouth and pharynx into the small and large bowel. Those were the sites from which candida would disseminate. Nystatin was nicely suited to the task because it wasn’t absorbed.
    As to pi, unlike you, I was never attracted to it. Its mathematical infinity seemed existential. Then and now, I prefer pie.
    Cheers,
    Bill

  12. courtney =) Says:

    hi bruce,

    catching up on your blog….glad to hear that you are improving, but not so glad to hear about your oral thrush and fungal infection. i hope your clever swish-and-spit solution works out well!

    hope you had a happy pi day. i spent mine at a wastewater treatment plant and missed the opportunity to eat pie for pi day!

    so your comment on the probability of a toothpick landing on a line of notebook paper made me think of a pi proof that my classmate recently told me about: take a straight object of a given length, and throw it at a set of parallel lines set apart at a distance equal to the object’s length. count the number of times that your object crosses one of the parallel lines, then the ratio of total throws to the number of crossings approximates pi. not the same as your example, but along a similar vein.

    anyway…still cheering for your progress here! when will see flowers here in champaign? who knows…it is still cold here.

    warmest regards to you and the family,
    courtney =)

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