Archive for January, 2011

January 28, 2011

1-27-11 Thursday Day +92

Just a quick note.  We were hit hard by the snow last evening. Our power is out, but fortunately we have a generator.  Roads were clear enough to make it up to Hopkins today.

Status:  Caught Ethan’s cold – I’m miserable.  Just have to be so careful around these viral magnets.

Events:  Platelets are up, probably a result of getting off the antibiotic Bactrim.  Have to see how counts hold up with this viral infection.  Back to Hopkins on Monday for a check – hopefully soon on a once  a week schedule.

Comments:  Getting a physical therapy consult tomorrow to get my muscles back in shape.  Gonna try some protein drinks to get my intake up.

 We’ll touch base on Monday.




January 25, 2011

1-24-11 Monday Day +89

Greetings from the cold Northeast, I’m sure many of you are suffering the same intense winter. Even climate change doubters still need to put on an extra layer.

Status:  Moving slowly, but hopefully forward.  A quick visit to Hopkins today for a platelet check.  Those little bitty buddies are up a bit, so changing from daily Bactrim to Dapsone may have assuaged the marrow suppression – going back Thursday for another check to make sure we’re proceeding in the right direction.

Events:  Set up a rehab consultation here at home to give me some instruction on getting my muscles back in shape.  Because of the Hickman catheter in my right chest, repetitive motion on that side is verboten, so I’ll have to wait until it’s removed to really get a total body workout.  Once we are on a once-a-week checkup or less frequent visits, we’ll remove the catheter and put up with peripheral needle sticks.

Comments:  So many people have been supportive for so long – we really are amazed.  We are fortunate to know so many wonderful, wonderful friends.

 We’ll touch base on Thursday.



January 21, 2011

1-20-11 Thursday Day +85

Status:  Where have I been for a week?  At home recovering.  A visit this morning to Hopkins for a check up.  Blood counts are down somewhat, especially the sensitive platelets, so they took me off Bactrim (the antibiotic prohylaxis against Pneumocystis pneumonia), which has been associated with bone marrow inhibition and switched me Dapsone.  Should do the same trick without marrow suppression.  I’ll go back Monday just for a platelet check.

 Had a talk with my oncologist since I wasn’t feeling too great.  It was reassuring that he said, “You’re still sick.  Not with leukemia, but what we did to you these last 9 months.  It’s going to take time to recover, longer than you think.  But step by step.”  He was actually happy with my progress.

Events:  Lisa went back to work yesterday and did a piece for World News.  Good to have things start back to normal.  Ethan gave a Powerpoint presentation to the middle school this morning, as all 6th graders are required to do.  His topic, “My Dad’s Bone Marrow Transplant.”  Lisa said he did a great job.  One of his teachers stood up and complimented Ethan for how he has handled all this and called him a role model.  Ethan said he was embarrassed.  I said what a wonderful thing for his teacher to say.  His reply, “Yeh, but not in front of everybody!”

Comments:  I’m coming to grips with how long this journey will last.  We’re all used to an illness or an injury where we seem to start recovering quickly, with each day getting better and better – wellness just a week or a few weeks away.  This goes so much more slowly.  One day does not seem to be an improvement over the last.  So you get the feeling you’re not improving.  Nice to hear someone say, “Hey, it’s all right, you’re not backsliding – just moving at a glacial speed.”

  We’ll touch base Monday and let you know how the old platelets are doing.



January 15, 2011

1-14-11 Friday Day +79

First let me say how uplifting your comments were on one of my down days – more enriching than any medicine.  And to say you’re better than prednisone is a high compliment.

Status: Now for the good news.  The results of the definitive bone marrow done last week showed “NO EVIDENCE OF LEUKEMIA.” They looked microscopically at the marrow, performed flow cytometry to isolate individual cells, and even used the FLT3 mutation I have as a marker, yet could not find any leukemic cells my body.  I told Lisa I wish there were a simpler, quicker, and easier way to get to this state than the 9 months I’ve spent – but we’ll be more than glad to take the outcome.

Events:  They’ve dismissed us from IPOP today (kicked out of the nest to fly on our own).  I’ll see my oncologist at Hopkins once a week for a few weeks and then less frequently after that.  The ongoing problem of pain on urination was referred to a urologist who said it’s due to a benign enlarged prostate, and added an anti-spasmodic drug to the mix.  At some point, prostate surgery to enlarge to pinched off urethra will probably be necessary, but that’s in the future.  Right now the future looks rosy.

Comments:  It’s difficult to put my emotional state in context.  Somehow I feel I should be more elated with the wonderful news we’ve received.  Perhaps it’s a little post-traumatic stress disorder.  Like the miners who were trapped and then were saved, they were happy to free, but no one was doing an end zone celebration – maybe some time before it sinks in.  Thank you for being there with mel



January 14, 2011

1-13-11 Thursday Day +78

Status: The doses of prednisone have tapered off, which means an end to the buoying effects of steroids, and a sense of less well-being.  They’ve stopped the anti-viral drug Valcyte, which is probably responsible for my lowered counts. Neutrophils are good, but platelets significantly down.  Hope they rebound on their own without a need for a transfusion.  Haven’t had any kind of transfusion or fever since hospital discharge – a major success.

 Events:  Ongoing problem of pain on urination – at times quite debilitating. Going back to Hopkins tomorrow for a urology consult.  Bet they’re going to find one more place to stick a tube.  Still playing whack-a-mole.

Comments:  A long and winding road.  Difficult to be as patient as I need to be.  They said the first 100 days would be tough, happy we’ve gotten through 3/4 of them.



January 11, 2011

1-10-11 Monday Day +75

Status: Numbers are stable, and tapering off steroids.  Things are going well enough that I’m beginning the transition process from IPOP to my lead oncologist at Hopkins for outpatient follow up.

Events:  Had my bone marrow this morning with some Versed and Fentanyl (conscious sedation).  I’m told I was asking the IPOP attending doing the biopsy about his medical training. I, of course, have no recollection of this.  If things hold stable they may release me from IHOP the end of this week or beginning of the next.  Most patients would then be sent back to their referring oncologist, but in my case it’s the attending oncologist at Hopkins, and who first began all this with me in April.  Postponed my lumbar puncture until sometime next week.

Comments:  Leaving IPOP will be traumatic.  It’s been our security blanket, being closely watched for big and small problems alike, all with an extraordinarily caring and professional attitude.  But sooner or later I’ll have to cut the apron strings.  We’ll start peeling off drugs little by little, and give my body a chance to heal on its own, all the while watching for recurrence of graft vs. host disease or infection.  Although I’m looking forward to seeing all our friends, we have to be unbelievably careful about exposure to colds and flu.  Next visit Thursday, then perhaps on a twice per week schedule.  As my oncologist says, “Step by step.”

  My Mom’s 86th birthday is tomorrow – Happy Birthday, Mom!

  Hope you’ve been missed by the snow. We’ll share our visit on Thursday.



January 8, 2011

1-7-11    Friday   Day +72

Status:  Got the green light today, 72 days after my transplant, that we can go home!  We’ll pack up tonight and be back in Bethesda tomorrow.  Still not disconnected from the mothership, I’ll be back Monday for a repeat bone marrow to get enough marrow so as my IPOP attending says, “I can look you in the eye and say you’re all right.”

  Also scheduled for a potential repeat lumbar puncture on Tuesday because the previous one on Wednesday was deemed, “traumatic.”  Simply put, in putting the spinal needle in, they punctured a vein, which led to some bleeding into the spinal fluid contaminating it with blood.  Spinal fluid is normally clear, colorless, and has no cells, but my sample now has red blood cells, white cells, and plasma in it, messing up their delicate tests.  I believe the only place they haven’t stuck me is in my eye.

Events:   Lab results and diminution of graft vs. host reaction on tapering steroids were deciding factors in letting me be an hour away.  

 Comments:   While we did have to deal with numerous “Whack-a-moles” during the last 10 weeks, we’re grateful we never had a fever and having to deal with those complications.  Still issues to work through as we start discontinuing certain drugs and watch my progress, but we’re moving forward and hoping we can put his episode behind us.  The most dangerous period is the first 100 days, so we’re not out of the woods, but we see daylight ahead.

  It has been of so much consolation having you with me on this journey, perhaps impossible for me to have made it to this point without you.  How does one say, “Words cannot express?”

  We’ll take joy in returning home, rest, and report on Monday’s appointment.   Have a peaceful and loving weekend.


January 6, 2011

1-5-11   Wednesday   +70

Status:  Amazing resolution of skin changes from graft vs. host disease with prednisone (still tapering the dosage).  Total body shedding of skin cells, similar to the peeling after a sunburn.  I leave a trail behind me like Pigpen in Peanuts.   Lab counts are still all excellent.

   The bone marrow biopsy from last week wasn’t large enough to give them the results they wanted, so they’ve scheduled another on Monday.  Reminds me of old joke in the laboratory then they drop a vial of blood.  The lab returns the slip asking for another blood draw saying, “Insufficient sample.”  They were pleased that what they did have showing 100% donor DNA.

Events:   Lumbar puncture went well – the neuro-radiology fellow was smooth.  Then you spend two hours lying on your back to prevent post-LP headache.  Despite some ongoing issues, the plan is to let us go home permanently on Saturday, then perhaps a visit twice a week next week and decreasing from there.  

 Comments:   Talking with one of my nurses who was with me in the early days of chemotherapy and reminiscing (could that possibly be the right word) about the last 9 months.  Most of it has been a blur, and I guess a good thing at that.  What hasn’t been foggy is the love and support from you, feelings of such magnitude we could not have imagined.  We are grateful beyond belief.

  Well rest up tomorrow, and report to you on Friday.

 With all our love,


January 4, 2011

1-3-11   Monday   +68

Status:  Feeling better, a lot to do with the prednisone I’m taking for graft vs. host disease.  As we use to say, it will cover up a multitude of sins, but has some magical properties. On a tapering dose for another week.  My appetite has increased (even to the point of a nighttime craving for chocolate brittle), and a significant reduction in my skin rash.  Lots of dry skin sloughing off (one of the most expensive chemical peels you can buy).  And the results of just 3 injections of granulocyte stimulating hormone increased my white cell and neutrophil counts 5-fold and back into normal range – some magic stuff there.  So they’ve stopped the hormone injections, and will soon stop my anti-CMV medications.  So at the moment the “moles” have stopped popping up.

  Events:   The kids and Lisa’s folks were up here for the weekend, and we heard the revelers long into the night on New Year’s Eve.  Scheduled for another planned lumbar puncture with chemotherapy on Wednesday, then if things are looking good on Friday, they may let us leave Baltimore for home.  Still come back for visits maybe twice a week, then once a week, once a month, etc.  

 Comments:   Still on an every other day schedule now, M-W-F- S-T-T-S.   All this variation because of our 7-day week.  Although it may have been acknowledged in Genesis, it was certainly in use before then.  So why 7 days?  And why is the number 7 considered so mystical, aside from the fact it’s the number most likely to come up on a single roll of the dice in craps?  My guess is that for those societies that developed a 10-based numbering system (ten fingers and toes, 5 digits on each hand and foot), 7 was the only prime number between 5 and 10.  Every other number could divided and played with (makes slicing a pie without arguments pretty easy, but a 7-person dinner just turns awkward). 

  Keep your fingers crossed for this weekend.  We hope you have a good week as well.  We’ll update you on Wedneday.