12-30-10   Thursday   +64

Status:  Looks like I’m in a stable slump.  Sort of like a .300 hitter suddenly batting .200.  As we resolve one problem, another one seems to pop up.  Lisa refers to this under the official medical terminology as the “Whack-a-Mole” syndrome.

  Events:   A brief summary:  the search for the cause of my dysuria (pain and burning on urination) has shown up no bacterial urinary infection, no BK virus, no adenovirus, no herpes virus.  So the cause is obscure.  We tried pyridium (an oral pill that acts like a local bladder numbing agent).  Didn’t seem to help and caused nausea and vomiting.  So we stopped it – then the staff tells us they really haven’t seen it work either.

  Cytomegalovirus cultures are negative times two, so we’ll just continue the anti-viral Valcyte for just another week, not a moment too soon since it’s probably the reason my counts are low.  In order to help my neutrophils come back, I’m getting an injection every other day of a hormone-like factor that stimulates those cells.  It’s given like an insulin shot.

  My graft vs. host disease continues to progress, and seems worse on the parts of my skin that’s been exposed to the sun.  One of the nurses said she’d seen a patient that was spared in the pattern of a bikini.  I’ve gotten the most of the graft vs. leukemia effect, so they started a 12-day course of steroids to halt the progression.  The dose is what we in the medical profession refer to as “industrial strength,” and it comes with its own hazard since it’s such a potent immune-suppressant.  It will certainly make me feel better and increase my appetite.  

 Comments:   The kids are coming up for the weekend – good for them and good for me.

 I wish everyone a wonderful New Years Eve, and a Happy and Healthy New Year.  I’m looking to join you in that.  We’ll update you on Monday.

Love,

-Bruce

12-28-10   Tuesday   +62

Status:  The slump week continues.  Counts are still dropping most likely from the Valcyte.  If my CMV titers come back negligible, they’ll  stop the Valcyte.  Until then they have started a drug to stimulate my white cells.  The neutrophils are naturally controlled by a hormone called granulocyte colony stimulating factor.  Remarkably, it has been produced in quantity in the laboratory.  I was given an injection today and will receive one every other day for awhile.  

Events:   Had my bone marrow biopsy today, not as bad as before although it took them 3 tries.  Started on pyridium for urinary discomfort – it stains the urine a deep orange – many women with previous UTIs are quite familiar.

 Comments:   Not the best of times, but take great comfort in Dr. Debbie Blum’s encouraging words.  I’ll keep the faith that things will get better.  Next update on Thursday.

Love,

-Bruce

12-27-10   Monday   Day +61

Lisa is filling in today because Bruce is a bit under the weather.

Status:  Still in Baltimore and seeing our friends in IPOP.  They tell us bone marrow patients often have a 60 day slump – and if so I’m right on target.  White cells and platelets are down, possibly due to Valcyte medication – which they may stop at the end of this week.

Events:   Was supposed to have my bone marrow biopsy today – and after the last one, which was horrific, I decided to request sedation for this one.  They are happy to do that – but never mentioned, and we forgot, that you can’t eat for 8 hours before hand.  So we could not do the bone marrow today.  We will do it tomorrow.

One bit of nice news – it appears from my last nasal cultures that I am finally negative for rhinovirus.  It took me over a month to clear the common cold.  Just an indication of how my immune system is (not) functioning.

 Comments:   It was great to get home for a few days.  We arrived Thursday night to see the kids and Lisa’s folks, who are in from California to help out over the holidays.   It was wonderful being home and looking forward to having that as our only residence at some point in the hopefully not too distance future!

Hope you had a nice holiday weekend and we’ll report back tomorrow.

Love,

-Bruce

12-23-10 Thursday Day +57

Status: No numbers needed for today because I am writing this from home!  They’re letting us have the long weekend off, and then we’ll be back Monday for my 60-day checkup (bone marrow and a few others things).  So good here after being away for 2 months.  Look forward perhaps in a few weeks to making it my permanent habitat.

Events:  My CMV counts have dropped significantly so they reduced my Valcyte (anti-viral medication), which should help my counts.  Valcyte tends to reduce them.  GVH rash is about the same with dry mouth and gritty eyes.  Still not inclined to treat it, and every day I count it as anti-leukemic therapy.  Developed some dysuria, which may be a urinary tract infection or a rare infection from what is called the BK virus.  They cultured for both.

Comments:  So good to be home.  Lisa’s parents are here for the week, and I sat just chatting with Rachel on my bed for an hour.  Rare for a teenager to have that long an attention span with her Dad.  Know how much she’s missed me.

Have a wonderful holiday weekend.  We’ll check in on Monday.

Love,

-Bruce

12-21-10   Tuesday  Day +55

Thank everyone for such cheery birthday wishes.  Some probably think I’m still a youngster, some may wonder if people really get that old (Yes, and we’re glad they do).

Status:  Numbers?  Not numbers?  Maybe we should take a poll.  Regardless we are doing well.  A couple of ongoing issues.  Still positive for rhinovirus, so my immune system is yet to develop.  Sort of like a newborn.  Fortunately infants get antibodies from their mother that last several months after birth, giving them protection when they’re most vulnerable.  I’m not that lucky, hence the need for isolation.  Still babies don’t receive live-virus vaccines until a year of age since their immune systems aren’t developed enough until that time.

Events:  More importantly my previous CMV infection from 35 years ago has been reactivated, and I’m taking Valcyte (valganciclovir) to keep it in check.  The problem is that the drug lowers your blood counts, so you’re caught in the cross hairs of reducing the medication dose, which might increase the chances of infection, or keeping the current dose and increasing the chances if infection.  I’ll leave that decision to the guys who earn the big bucks.  Lower counts might also be from an infection (they’ll get a CT scan of my lungs and sinuses on Thursday), or from GVH, which for now seems stable. 

 Comments:   Depending how I look on Thursday, they my let me go home over the long weekend – that would be a boost.

Looking forward to improvement.

Love,

-Bruce

12-19-10   Sunday  Day +53

Status:  Doing well (with apologies to those want numbers).  Another good day in IPOP.

Events:  The usual checkup, with the Co-director of the transplant service coming to look at my rash.  He said it’s just what they wanted.  Not too little, not too much – just right. Said he thought I would do just fine, and wanted to keep me that way.  (Interpretation – they may want to keep me in IPOP for longer than this week). 

 Comments:   Although not going home soon was disappointing, we’ve invested a lot in this process and willing to follow doctor’s orders.  When we leave here, we want it to be permanent.

  And thank you to all those who sent me Happy Birthday wishes.  My birthday (the one my Mom remembers) is tomorrow the 20^th.  I’m just glad I’m able to celebrate it – something we weren’t sure about last April.  And thank you for all your support, which has enabled us in so many ways to be here with you.

Love,

-Bruce

12-17-10 Friday Day +51

 Status: Everything is stable, counts are good. LP results showed no abnormal cells. The skin biopsy indeed showed graft vs. host disease, which we view as a positive sign. The skin rash is not causing me any discomfort, and now we are assured that we’re getting a graft vs. leukemia effect.  No sense of going through what we’ve been through these last 8 months if we didn’t get some continuing anti-leukemia benefit.  As long as the GVH doesn’t progress they’ll let it alone.  If it does progress they’d consider immune-suppressants.

Events: Checked my Hickman catheter placement with a chest x-ray.  And we talked about my discharge from IPOP, which may happen the end of next week.  Was going to bring the kids up for the weekend, but Rachel developed some sniffles, so Ethan came up instead.  Looking forward to going home and being with them both.

 Comments: Have a great weekend, we’ll dutifully report on Sunday.

 Love,

 -Bruce

12-15-10   Wednesday  Day +49

Status:  Not as well as yesterday.  Hiccoughs kept both Lisa and me up at night.  IPOP labs look good a usual.  LP showed continued elevated protein, but we’ll await the flow cytometry results, which show if any problem cells are present.  None of the previous results ever showed cells, but continued elevated protein is a puzzle.  CMV copies are still up and will continue to take anti-virals.

Events:  My rash is still present so they did skin biopsy today looking for graft vs. host disease.  We’ve come full circle; I had a skin biopsy for a benign lesion a year ago, which became infected and took several weeks to clear – one of the first signs my white cells weren’t working correctly.  Results won’t be back for a week, but we hope they’re positive, demonstrating we have some graft vs. leukemia effect.

Comments:   Next visit Friday, we’ll see you then.

Love,

-Bruce

12-14-10   Tuesday  Day +48

Status:  Feeling good today (any day not at IPOP is a good day).  So I thought I’d take the opportunity to answer a few questions.

  First a correction – my previous nasopharyngeal culture showing clearing of my rhinovirus was actually positive.  So 4 weeks later I still have it.  Fortunately, as the name implies, it grows only in the nasal cavity.  It’s evolved to exist in the lower temperatures there and can’t spread to the body.  But illustrative of the fact that my immune system is too immature to properly detect, analyze, and produce antibodies to viruses.  More serious viruses would be a distinct problem.  So I’ll limit my exposure to people for some time.

  Also my immune system contains lymphocytes that populate my lymph nodes, patches in my GI tract, and macrophages that eat up foreign material in my lungs and other tissues.  I haven’t gotten the expert word from the big boys around here, but my guess is that they’re all gone and are slowly replaced by my new marrow generated cells.  Again, this takes some time, and the reason you’re not back to normal for a year or more.

  That and the foregoing being the case vaccines would not effective in generating antibodies for some time.  They’ll wait a year before vaccinating me against all my previous baby shots and so on.  They’ll wait a year after that before exposing me to live virus vaccines.

  We’ll check on CMV and LP results tomorrow and let you know.

 Love,

-Bruce

12-13-10   Monday  Day +47

Status:   Didn’t have a particularly good night’s sleep.  Lisa forgot to turn down the thermostat as she does every night.  What is it about being under warm blankets but in a cold room?  Had to get up a little earlier than usual for my IPOP visit and lumbar puncture.

Events:  The purpose of the LP is to instill chemotherapy into the spinal canal to prevent any recurrence of leukemia stemming from errant cells in the central nervous system.  The resident performing it was flawless in his technique, which made the whole experience comfortable (I’ve had some cringe-worthy LPs before.)  When Lisa and I dined at the famous French Laundry in Napa, we got the owner and chef Tom Keller to autograph his cookbook.  He signed it with the phrase, “It’s all about finesse.”  It’s true in medicine as well.  Labs looked good as usual.

  One of the first signs of graft vs. host disease (GVH), in which my new immune system sees my body as foreign and tries to reject it, is a skin rash.  The nurses had been examining me closely over the last few days wondering if a faint redness was a rash or my natural ruddy complexion.  My nurse practitioner wondered if it was getting more pronounced and called in a colleague to have a look.  Before I had time to take my shirt off she said, “It’s a rash.”

  The first step was to take me off Bactrim (which can cause rashes), and if it doesn’t go away they would think GVH disease more likely.  If it is GVH, but doesn’t cause any problems and doesn’t progress they’d leave it alone since you want the graft vs. leukemia part of it to stay (my new immune system sees any old cell as foreign whether leukemic or not.)

Comments:   One of the treatments for GVH is immune suppressants (I’m not on any now).  I was actually getting a little nervous about not having any GVH phenomena at all since totally eradicating the leukemia was what these last 8 months has been all about.  We’ll see what transpires.  On the M-W-F schedule this week.  Talk to you on Wednesday.

Love,

-Bruce