Archive for May, 2011

May 19, 2011

5-18-11 Wednesday  + 6 ¾ months

Status:  Doing better after a tiring last week, but lab results at Hopkins pointed out that no good deed goes unpunished.

  Hematology results were fine, but my blood sugar was up at 589 (normal 70-100), a result of the prednisone I’m taking (corticosteroids block insulin’s ability to get glucose into cells).  I was lethargic, had blurred vision, drinking and urinating a lot, and getting up in the middle of the night to eat.  

 When blood sugar gets over 200 or so, sugar spills out in the urine and carries water with it (the kidney knows not to pee out syrup).  So you get thirsty and drink more water, and these up and down changes make the body’s cell water content increase and decrease, including the fluid in eye’s lenses, which causes them to expand and contract, resulting in blurred vision.

My mental acuity was somewhat diminished – when I play chess against my computer, the computer wins most of the time (I occasionally can beat it in the end game of the Sicilian opening), but over the last week I have almost always lost early on from what chess players would call blunders.

My docs have put me on an oral diabetic medicine that causes the pancreas to put out more insulin, and my fasting blood sugar dropped to 150 in a day (I played chess to a stalemate).  Now I know what being diabetic feels like – I’m counting calories and carbs, sticking my finger twice a day for blood sugars.  This whack-a-mole will only last until I’m off prednisone in about 6-8 weeks or so, and I can get back to my milkshakes!  

Events: Along with the lab reports this week at Hopkins was my scheduled lumbar puncture with chemotherapy injected into the spinal fluid.  The procedure went well, but you do have stay lying flat for 2 hours afterwards.  Only 3 more to go, scheduled 1 month apart. Next lab check in 2 weeks.

Comments: The chemotherapy introduced into my spinal fluid is meant to kill any leukemic cells that may be hiding there.  We’re using methotrexate, an anti-metabolite, which looks chemically like folic acid (folate) a necessary molecule for DNA production.  Fast growing cells take in the chemical counterfeit and damage themselves.  Of course, folate is essential for embryonic growth, too.

  I was fortunate enough at JAMA to shepherd through the breakthrough study by CDC that showed that spina bifida was caused by a low level of folate in pregnant women’s diet.  Since then cereals and other foods have been fortified with folate.  But the spinal development happens in just the first weeks after conception (when women don’t even know they’re pregnant), so any women of child-bearing age should be taking folate supplements.

  I have had so many conditions resulting from my original disease and its treatment that I have become much more empathetic to patients with those ailments.  If I had learned these lessons at a younger age I’m certain I would have been a better doctor. [I do have to confess that as an intern I took many of the meds my patients were taking to see what the side effects were like (Lasix and urination, nitroglycerin and headaches, etc.]

 Looking to keep my carbs down, calories up, and beating my computer (my brothers are sure to comment on how they beat me in chess).




May 13, 2011

5-12-11 Thursday  + 6 ½ months

Status:  Doing well.

Events: Sharing the good news as soon as we get it.  Not only did last week’s bone marrow biopsy show no signs of leukemia (that means oncologists looked under the microscope with special stains and saw no leukemia cells), but a sophisticated technique called flow cytometry showed no leukemia cells either.  In flow cytometry, bone marrow cells are suspended in a stream of fluid and examined microscopically as they pass by a laser/electronic detection apparatus.  Any abnormal cell lights up.  But with me, none there!

 Then onto looking even closer, by examining any chromosomal abnormalities (specifically at the FLT3 mutation that characterized my leukemia) – none there!!

 And finally at the DNA level, looking for any of my previous DNA in the bone marrow.  Results showed 100% donor DNA, which means none of my previous marrow cells (including any leukemia cells) was present)!!!

Felt like shouting, “Nah-nah-nah, goodbye.”  Still a lot of recovery to do after all that went into clearing me of cancer, and a friend who had a bone marrow transplant says, “You never quit looking over your shoulder.”  But I’m looking forward.

Comments: Thanks to all of you, who helped get us to this point in the journey.  But we’re not at the finish line yet, so I hope you’ll keep rooting.

 Back to Hopkins Monday for the 3rd of 6 lumbar punctures with chemotherapy (standard protocol) and reports to you then.

 Love you all,


May 5, 2011

5-5-11 Thursday  + 6 months

Status:  Feeling good.

Events: Wanted you to hear the good news first.  Preliminary look at bone marrow shows no leukemia!  My oncologist emailed me and said, “YEAH.”  Great to have him as a cheerleader.  Still await molecular and chromosomal reports.  They’ll look for any of my DNA that is left (don’t want to see any) and markers of my particular mutation (don’t want to see any of them either).

Comments: Really am feeling much better.  Everyone has said it just takes time – and I have plenty of that.

  I wish everyone a Happy Mothers Day.  As the old proverb goes, “God couldn’t be everywhere, so he created Moms.”



May 3, 2011

5-2-11 Monday  + 6 months

Status:  Feeling progressively better each day.  Appetite has increased (the steroids), but the result is that I’m eating more, and gained 2 lb since last week.  Now, the truth is I’m eating a horrible diet – steak, whole milk, ice cream, cookies.  Looking forward to the day I’m back at my ideal weight and eating fruits and veggies, but right now filling up with low-cal foods is counterproductive.

Events: A comprehensive visit to Hopkins today for my 6-month check up after transplant.  Started off as usual with blood work, but this time they took 15 tubes of blood (wondered if I was going to faint when I stood up).  Each tube is labeled with a yellow sticker with a bar code, my name, birth date (didn’t ask me for a copy of my birth certificate), Hopkins ID #, and lab test.  I’m asked to check each and every label to make sure it’s accurate.  Each tube is then placed in a ziploc biohazard bag and sent off to separate laboratories.

  Next stop was my bone marrow biopsy.  It was crowded with Lisa, me (on the table), two nurse practitioners, a laboratory tech (who smears the bone narrow on dozens of slides), and a Korean nurse visitor.  The nurse practitioner was kind and thorough and asked, “What’s this? Your dozenth time?”  At a minimum, but she still went through all the consent forms (you might bleed, you might get an infection, you might die – all the cheery news you’re looking for).  I was given some Versed and Fentanyl for conscious sedation, which makes it a whole lot easier.  They got good samples, so we wait perhaps until the end of the week to get the results.

 Next, a visit with my oncologist.  Said I looked good, my labs were stable, as was my recent CT scan, and that things were proceeding well.  Plan was to extend my visits to 2 weeks, then monthly.  It’s a confidence boost to see my leash being let out.

Comments: Corticosteroids (like prednisone, not anabolic steroids like testosterone) make it more difficult for insulin to work getting glucose into cells – you in fact become diabetic. My fasting blood sugar is up, which means that glucose is sitting around in my bloodstream because it can’t get into cells.  Meanwhile, although my blood is full of sugar, my cells are starving (water, water, everywhere, but not a drop to drink).  The cells send a signal to the brain, “Send more sugar!”  So you get cravings for food, especially sweets.  The body has to do something with all those extra calories floating around so it converts them to fat and stores them throughout the body.  The body can make glucose from protein in a complex process, so eating meat is a better strategy, but it’s hard to resist those Nabisco Sugar Wafers.

 Have a sweet week yourselves, we’ll let you know as soon as we find out the results of our bone marrow.