Archive for April, 2011

April 25, 2011

4-25-11 Monday  + 6 months

Status:  Definitely feeling better – it’s not the shoes, it’s not the bike – it’s the steroids.  I know they are working because my skin GVH lesions are healing, and my appetite, and blood sugar, are up.

Events: A very quick visit to Hopkins today just for a lab check.  Looked pretty good (all the liver enzymes have come back down).  Each visit they weigh you and take your vital signs, but not today.  The tech said “lab check only.”  I asked her why she wouldn’t take my vital signs, and she said, “If something’s out of whack, I wouldn’t know who to call.”  Not really, but she was saying that I no visit scheduled with anyone – a good sign.  I got her let me on the scales, and I’ve gained 5 lbs.

  Citius, Altius, Fortius (the Olympic motto) – “Faster, Higher, Stronger.”

Comments: Next Monday is my big day – 6 month checkup including bone marrow.  The results will say a lot – hoping for the best.




April 19, 2011

4-18-11 Monday  + 5  3/4 months

Status:  Feeling better each day – more activity, more energy.

Events: A quick visit to Hopkins only because they had scheduled a CT scan of my lungs.  Looked over the scan with a radiology fellow – no changes, everything looks stable – good sign. Next visit to Hopkins, next Monday, but only for lab checks – not even seeing anyone. 

Comments: Lisa has been working morning ‘til night (literally from 5 AM wakeups for Good Morning America to Nightline).  Sleeping air traffic controllers means she hasn’t had much sleep herself.  Still manages to keep me and the household in order – a remarkable woman.

  Tonight we celebrated Passover at our house with a Seder for friends and their children – first, big, social outing for me.  I spent the day working  on my chopped liver and matzoh ball soup.  I made the remark that it was a special Passover (not only because I was here to celebrate it) but because the holiday is all about freedom and escaping the oppression of dictators, what so many people in the Middle East are yearning for now.

   May you always enjoy the blessings of freedom.



April 11, 2011

4-11-11 Monday  + 5 1/2 months

Status:  Feeling better with more activity and lifting weights.  Now, I must tell you that these are teensy little weights, but then again neither Rome nor Arnold Schwarzenegger was built in a day.

Events: Good day at Hopkins.  Everything is stable, and you know you had a good visit when the conversation with the oncologist is all about sugar-free lemonade.  Next appointment for labs is extended to 2 weeks!  I guess I must be doing better.

 But of course this isn’t like getting over a cold and saying you feel better.  It’s a long slow climb.  But I’m seeing progress and definitely going in the right direction.

Comments: Hard to believe I started this blog and my treatment a year ago.  At the time, things went sluggishly slowly, but looking back I don’t know where the year went. 

Isak Dinesen (pen name for Baroness Karen Blixen) wrote in Out of Africa, “Difficult times have helped me to understand better than before, how infinitely rich and beautiful life is in every way, and that so many things that one goes worrying about are of no importance whatsoever …”



April 5, 2011


4-4-11 Monday  + 5 months

Status:  Feeling better and little stronger.  Prednisone seems to be helping, but it’s a long and slow process.

Events: Weekly visit to Hopkins, a good visit with my oncologist. Spent a bit of time talking about activity, diet, and a sundry of other things.  Lisa and I feel very comfortable with him, tackles not only big issues, but the little daily things as well.  Lab numbers were good, with a full complement of white cells and neutrophils, but we talked about the fact that I am still immune-suppressed because graft vs. host and the prednisone.  If I’m doing well they may move me to every other week soon.

  Had pulmonary function tests today.  They’re getting more sophisticated all the time.  Measured total lung capacity (they put me in a glass isolation box about the size of a phone booth), and measured all sorts of lung volumes, tidal, forced expiratory, residual, and how well gases diffused across the lung.

Comments: What’s the best faucet to use to wash your hands? A study of newly installed, hands-free faucets at John Hopkins, all equipped with the latest electronic-eye sensors shows they were more likely to be contaminated with Legionella bacteria (the culprit in the initial outbreak of Legionnaires disease in Philadelphia, and several more since).

About half of water samples from electronic-eye faucets contained Legionella, but it occurred in only 15 percent of water cultures from traditional, old-style fixtures with separate handles for hot and cold water.   So go for the traditional faucets (you can still use paper towels to turn them off).

  Seems that often older is better – and I can say from my point of view, older is definitely better.  Of course, who wouldn’t want to 25 again.