Archive for October, 2010

October 31, 2010

10-30-10 Saturday  Day +3

 Status:  8.75/10.  A little nausea and vomiting from the chemotherapy (ameliorated by anti-nausea meds) and abdominal cramping from C. difficile (ameliorated by an all liquid diet – gonna lose a few days caloric input, but a small price to pay).

Events:  Finished up my chemotherapy, and it’s just waiting for my counts to rise this next 4 weeks and supporting me with platelets, red cells, and antibiotics.

  Ethan and Lisa up for the day.  Ethan enjoying my iPad.  I was wearing an MIT T-shirt and my attending asked, “Did you go to MIT?  What course?”  I said, “Course XVI” (all courses at MIT are known by their number).  He paused and said, “Wait, don’t tell me.”  Finally guessing Aeronautics and Astronautics.  For him, I guessed Course VII, Life Sciences.  The rest of the rounding staff had no idea what we were going on about.  The resident piped up she had gone to Harvard.  I said, “What’s wrong, you couldn’t get into MIT?”  Score one for the patient.  The attending had asked where I had gone to medical school.  I said, “Vanderbilt.”  He said, “What’s wrong, couldn’t get into Hopkins?”  Score one for the other side.

Comments:   I am surprised that it is gone so well so far.  Now we wait for the consequences of what we’ve done.  But transplant patients have benefited tremendously from what has gone on before.  They’ve been able to enjoy the benefits of increased effectiveness while decreasing the side effects and complications. 

  Enjoy the weekend.

Love,

-Bruce

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October 30, 2010

10-29-10 Friday Day  +2

Status: 8.75/10. Feeling better but still with abdominal cramping. Figured out what it was by serendipity. I had suggested a stool culture several days ago for C. difficile, the diarrhea-causing bacteria  because if I developed diarrhea I wanted to be able to request Imodium, but they won’t give it to you until lab reports for C. difficile come back several days later. Thought I’d get a jump on things. Murphy’s law is still in effect. Results came back positive!  The powerful antibiotic vancomycin is ideal, but I was already on it IV.  So they switched it to orally to get better antibiotic levels in the GI tract where they count.  I learned yesterday after being VRE negative (vancomycin resistant entetococci) that I had turned positive.  So I am on contact precautions (gloves and gowns) and strict hand washing for visitors and staff (alcohol-based gels aren’t particularly effective against C. dif).

Events: Today was the first of two days of IV Cytoxan to reduce graft vs. host disease. Cytoxan does not injure stem cells so it can be given right after transplant, but it does have a powerful effect on a type of white blood cells responsible for rejection, the T-lymphocytes. Getting rid of these right after transplant has been shown to decrease the incidence of GVHD. Timing is critical with the first dose given within 60-72 hours after the first drop of transplant marrow.

  Following the Cytoxan they run in 2 liters of fluid to keep the urine dilute. Cytoxan is metabolized to chemical called acrolein, which is irritating to the bladder.  It causes hemorrhagic cystitis (literally, bloody bladder inflammation).  In addition to the dilution, they are giving me Mesna, a drug that binds the inflammatory metabolite.

Comments: I was asked this morning by my attending physician how things were going in comparison to my expectations.  I said they were better.  Of course the tougher times are coming as my counts drop, but each day without a major difficulty is one day closer to leaving.

Love,

-Bruce

October 29, 2010

10-28-10 Thursday  Day +1

 Status:  8.75/10.  A little nausea and abdominal cramping.  Got a platelet transfusion last night, so some more sleep deprivation.

Events:  Lisa brought in two “birthday” cupcakes with candles.  She had to query the staff about lighted candles in the room.  It was approved, but I kept looking at the sprinkler overhead.  Should have remembered my residency rotation at the VA Hospital.  Patients on the pulmonary ward (often with emphysema or lung cancer) were allowed to smoke in their beds.  Amazing the building never burnt down.

  Just finished filling out my absentee ballot.  First time I haven’t been to a ballot box in 45 years.  The only exception was my first election in Chicago.  I lived on the North Side just a block away from the polling place.  I got there early before going to work and checked in at the registration desk.  The lady examining the voting register glanced up at me with a disapproving look.  “You not allowed to vote twice!”  I said, “What?”  She said, “You’ve already voted this morning.”  I told her I’d never voted in Chicago before.  Pointing to the register, she said, “Is this your name?”  “Yes.”  “Is this your address.” “Yes.”  “Is this your signature?”  “No!”  “Well, it sure looks like it to me, and you already voted.  Now move along.”

Comments:   Didn’t realize how smoothly the transplant moved along.  Afterwards, we heard horror stories from the nurses about anaphylactic reactions.  Lisa told me they had a shock kit up here during the procedure.  So it’s been relatively smooth sailing so far.   That is likely to change tomorrow when I receive the first of two days of Cytoxan.  If I get a good night’s sleep tonight, I’ll be as ready as possible.

  Hope you have sweet dreams as well.

Love,

-Bruce

October 27, 2010

10-27-10  Wednesday  Day 0  Transplant.

All the comments were so cheery.

 Status:  9.0/10.  A little tired after a long night, but feeling pretty good.

Events:  Transplant arrived at 1:40 AM by courier in a blue Igloo container (just like the movies).  The courier said that it looked like “good stuff” since it was a bright red.  It came in a large bag and looked more like tomato juice than crimson blood.  I suspect the color change was having the plasma (straw-colored fluid) removed and the cells washed with saline.

  They had taken my vital signs at 1:30 AM as a baseline and given me a diuretic (Lasix) because some people have had a problem with fluid overload.  The oncologist said it was a good sized-transplant (almost a liter containing more than 22 billion cells).  They raised my IV pole and let it infuse by gravity instead of a pump.

  Lisa stayed up with me to document the process and take pictures.  Vital signs continued every 15 minutes for a while, then shifted to every hour.  The nurse came in at about 4:15 AM when it had finished, tilted the bag upside down, let saline run in it, washed everything to the bottom and let the dredges run in –they didn’t want to waste anything.  For those of you who know that pumped breast milk is like gold, this stuff is platinum.

 They’ve also started anti-virals, another antibiotic, in addition to my anti-fungal meds in anticipation of the drop in white cells that occurs between the death of my old marrow and the engraftment of the new.  Should be about Day 30.  My earlier recoveries were slow, we’ll see how this new marrow does.

Comments:   I’ll have about a day and a half of rest before the post-transplant Cytoxan starts (given to decrease graph vs. host disease).  Then as my long-term oncologist said this morning on a visit, “Then it’s just waiting.” 

  Now that I have two birthdays (and share them with so many) I’ll get a chance to see what’s it’s like not being someone with only a late December birthday.

Love,

-Bruce

October 26, 2010

10-26-10  Tuesday  Day –1 

Status:  8.75/10.  Still experiencing some nausea and vomiting, and along with it anorexia.

Events:  My transplant is being flown to BWI airport and couriered right to me, should arrive about 1 am and be infused over several hours.  We do know it’s of the same blood type, but who or where it’s coming from is kept secret from us.  If after 1 year if both parties are interested they will make plans for us to contact each other. 

Comments:   Tomorrow, Day 0, will become my new birthday. And we’ll await the stems cells in find their home and provide me with a new immune system.

  We’ll let you know how it all went tomorrow.

Love,

-Bruce

October 25, 2010

10-25-10  Monday  Day –2  Status:  8.75/10.  A little nausea and vomiting.  Increased my ant-nausea drugs to twice a day.  The most difficult aspect is not feeling like you want to eat and get calories and protein in.

Events:  Lisa up for the day.  Such comfort.  No meds today, and two days of rest before my transplant. 

Comments:   We’ve crossed the Rubicon, the expiration  of my marrow is a foregone conclusion.  It held me in good stead all these years.  Now I will depend on someone else’s for life support.  Most if not all of the antibodies I formed over time will be lost, those received by vaccination and those by infection.  But that’s in the future.  Now we just have to deal with infections from the soon-to-be lack of white cells.

Love,

-Bruce

October 24, 2010

10-24-10  Sunday  Day –3  Status:  9.0/10.  Feeling OK and getting my last dose of chemotherapy this evening.  Then two days of rest before my transplant.

Events:  Lisa and Ethan came up today.  Ethan spent his time on homework.  Blood counts are stable.

Comments:   Although my counts are stable now, they will soon start to drop, and I’ll need platelet and red cell transfusions to keep my levels up.

  The myeloablative chemotherapy will destroy stem cells in the marrow, the very ones responsible for producing red cells, white cells, and platelets.  So without any new production, how many I had left depends on the lifespan of each type floating around right now.  Red cells have a life span of about 120 days, platelets about 7-10 days, and white cells about 3-4 days.

  Red cells can be made up for with blood type-matched transfusions, and platelets can be transfused as well, but they have to careful not to have too many transfusions since the body will gradually form antibodies against them, and they will no longer be effective.  White cells can’t be transfused unless they come from a bone narrow-matching donor.  Otherwise they’d be very reactive causing allergic reactions and a lot of other unpleasant stuff.

  I’ll have to wait for my donor marrow to find its home and start making cells of its own – usually takes about 30 days, which is why I’m here in the hospital for the next month.

 Deeply appreciate all the support, which keeps me going.

Love,

-Bruce

October 24, 2010

10-23-10  Saturday  Day –4. 

Status:  9.0/10.  A little tired at the end of the day.  It may be from lack of sleep, or fatigue from chemotherapy.  But otherwise feeling pretty good.

Events:  Lisa brought the kids up.  They’re always fun.  We watched Hemo the Magnificient on DVD.  Rachel, the academic, ate it up.  Ethan, the athlete, was somewhat less ethralled.   Took several walks around the hospital and lifted some weights.

Comments:   About to finish up my 3rd of 4 daily doses of chemotherapy.  Then two days of rest before my transplant arrives.  Still marvel at people who are willing to this for a complete stranger.

Have a restful weekend

 Love,

-Bruce

October 23, 2010

10-22-10  Friday  Day –5  (You might note that Day -5 is the same designation as yesterday.  That’s because we were told today that the bone marrow will be delivered by courier around  1 AM ET, which is of course officially Wednesday not Tuesday.  While we don’t know where it is coming from, we guess it’s from a donor in the U.S. and ferried here by jet).

 

Status:  9.0/10.  Another good day despite chemotherapy.  A little tired from two nights of interrupted sleep.  I should get some rest tonight.

 

Events:  Nice visits from fraternity brother Andy Lemer and from Laurie Singer.  Long walks with Lisa, who brought delicious sandwiches and salad.  I had three visits from nutritionists asking what I thought about the hospital food.  I simply said, “It’s hospital food.”

  Received my second of four doses of chemotherapy this evening.  So far, so good.  Reminds me of a New Yorker cartoon.  A man has jumped off a skyscraper and halfway down he says, “So far, so good.”

 

 Comments:   Good friend Susan Freed sent us altered lyrics to the hit song “Tomorrow” from Annie.  She made it “To Marrow.”  Brilliantly clever and funny just like Susan.

  Lisa brought in a notepad by our home phone with a message on it.  She asked if I recognized the handwriting.  I said it was mine.  She said she thought so, too.  But it written by Rachel, and it is an exact duplicate of mine!  And I’ve never had anything to do with her handwriting.  It’s all in the genes guys.

 

  P.S. Fraternity brother Dr. Joel Steinberg is correct that an object tossed in a straight line in a spinning capsule (a rotating reference frame) would seem to follow a curved path as viewed by those in the capsule, and they would agree that there must be some mysterious force acting upon it.  That force (the Coriolis force) was named after a 19th century French mathematician named Gaspard-Gusatve Coriolis.

  Imagine two people sitting opposite each other at a round table.  If one of them rolls a tennis ball to the other it will travel in a straight line.  But if you set that table (and the two guys sitting at) spinning like a merry-go-round the ball won’t appear to go in a straight line to them.  In fact, if you rolled it at the right speed you could shoot it to your partner and it would seem to come back to you on the other side, making a curved path.  But someone hovering over the table would simply see the ball go in a straight line and you coming round to meet it.  That’s why physicists call it a “fictitious” force.  Yet if the guys around the table didn’t know or feel they were rotating they could chalk up the tennis ball and it would leave a curved path on the table.  In fact, they could calculate what the force had to be to move the tennis ball from the straight line.  Yet even though “fictitious” it’s responsible for the spinning of hurricanes and cyclones and why water flows down the drain clockwise or counterclockwise depending which side the equator you are on.  That’s because we live on a rotating reference frame (the spinning Earth) but don’t feel it.  Artillerymen in World War I felt something was wrong when their shells kept landing right of their target.  And I imagine folks in Florida feel it during the hurricane season.

  I’ll be battening down the hatches pretty soon myself, but enjoying the good days now.

 

Love,

 

-Bruce

October 22, 2010

10-21-10  Thursday Day -5  (I’m adding the nomenclature used in transplants.  Day 0 will be my transplant day, which is now 5 days away).

Status:  9.5/10.  Feeling quite good. 

Events:  Had my test dose of Bulfan last night, and other than frequent blood draws interrupting my sleep, handled it well.  Started the 4-day regimen this evening with both Fludarabine and Busulfan.  They give the Fludarabine first because they learned that giving Busulfan first caused more instances of liver injury (one of the many things garnered over the years that’s resulted in better outcomes).  They’ll still draw hourly blood samples until tomorrow morning at 8 AM to fine tune the dose.  The nurses apologize for this and the fact that they have to draw the first few samples by needlestick.  The thoughtfulness is appreciated, but it is what it is, so no real reason to apologize.

   I took a couple of long walks with Lisa, and I’ve stayed out of my bed as much as possible.  NASA researchers in order to mimic the deteriorating effects of weightlessness simply put healthy subjects at bed rest for a few weeks.  The deterioration in muscle and bone mass is remarkable.  Not only has the human body evolved to exist on a gravitational planet but we now depend upon it for our welfare. The U.S. and Russia have spent billions on learning how to deal with the weightless environment on long-term space missions, for example to Mars.  Imagine the disaster that would occur if an astronaut steps off his Mars-lander and breaks his weakened leg bone.  A simple solution would be to provide Earth’s normal gravitation for the entire mission.  Not by some magical gravitational field on Star Trek, but by spinning the capsule.  You could spin it at a speed (not necessarily that fast) so that the centrifugal force equaled the Earth’s gravitational force.  There would be an up and a down, and when an astronaut let go of an object it would fall to the floor just as it did before he rocketed into space.  It’s also the principle behind Einstein’s Theory of General Relativity that demonstrates the equivalence of gravity and acceleration.  I figure if it was good enough for Einstein it should be good enough for NASA.

 Comments:   On my first entry to this blog, I entitled it Defying Gravity, which is what I’ve been striving to do these last 6 months.  Our hope is that this last effort will be a culmination of that goal – leaving the land of the sick to the land of the well.  We could not have progressed this far without your love and support. 

 I send that love back to you.

-Bruce