Archive for April, 2010

April 30, 2010

4-30-10

“I have a tale to tell” –  Madonna,  Live to Tell

Status: 9.0/10.  Feeling much better this morning after quite a night.  Since my observing skills were diminished, I’ll let Lisa do the reporting she’s so good at.

Events: “It wasn’t exactly Linda Blair in the Exorcist – since there was no projectile vomiting, in fact no vomiting at all, thank goodness.  But as I sat with Bruce last night after his last chemotherapy dose of Mitoxantrone – it certainly looked as though he were possessed.  The doctors had warned us that about 15 minutes after the last drop of the toxic substance, patients often get the shakes.

    Let me digress here for a moment – the drug Mitoxantrone is the startling color of deep, dark, blue-black ink.  Nothing you’d want to even get on your hands or clothes, but that’s what they had been pouring into Bruce’s veins … drop by drop … over two hours last evening.  If you remember your primary colors (mix blue and yellow) – you get the idea of what happens to the color of your – uh – output – after you take the drug.  Quite astonishing.

   Well, they were right on target about the shakes.  And not just any shakes.  Think of the craziest, wildest, teeth-chattering, roller coaster ride.   As Bruce explained in an earlier day’s blog, it’s called rigors.   He got it big-time.  His body was shaking uncontrollably, and his fever was going up and up.  Shake and bake.  Luckily the wonderful nurses here are prepared with Demerol at the ready.  One syringe in the IV and the shaking momentarily stopped.  But then the shaking continued.  Then a second syringe 15 minutes later.  It slowed again, for just a moment.  They don’t like to give the third and final syringe unless they have to, for fear of respiratory depression.  It was a close call – but ultimately they decided his rocking and rolling was slowing down enough that a 3rd wouldn’t be needed.   I kept putting cold compresses on his head and feeding him ice chips.  He was just totally worn out – but I have to say, even in the midst of all of it we both got a good laugh.  When Bruce asked the nurse between breaths how long it would last, she answered (you guessed it), ‘It depends.”’ 

Comments: Lisa as usual excels in her observatory skills.  No one calls hits, runs, and errors like she does.  Although, I can only vouch for her past record, I really wasn’t there for most of her reportage last night.  In addition to the inky induction, my platelet and red blood counts had dropped low enough to require transfusions of both blood elements last night.  The manner in which they deal with lowered white cell counts (in my case essentially zero) is to try to reduce the number of bacteria in my body with antibiotics.  I’m currently receiving norfloxacin (cousin of Cipro), a combination of piperacillin (high-end penicillin) and tazobactam (another high-end antibiotic that’s effective against certain resistant bugs), and vancomycin (a powerful antibiotic usually reserved as the last defense against resistant bacteria), and an anti-fungal oral medicine.  Potent potions protecting people from potential pathogens.

    I woke up feeling quite good this morning, most likely as a result of the diminution of the chemotherapeutic agents as they are being excreted.  Next phase is to watch for the often seen late side effects of the drugs – generalized rash, hair loss, and possible complications of a low white count.  I have to wear a surgical mask when I leave the room, and now that my formerly reliable white cells have disappeared on me, I have a more sophisticated mask (makes me looks like one of those duck-billed dinosaurs in a Disney animation, which to the good side might be an improvement).  

   They’ve also stressed that one of the complications is boredom.  Hey, after all this, I can do boredom.  But your comments, emails, cards, books, and good wishes certainly keep the boredom quotient down, and keep my spirits up.

  Enjoy the month of May (it’s always been my favorite). 

 Love to all,

-Bruce

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April 29, 2010

4-29-10

Lisa drives up every day from Bethesda to Baltimore.  Somebody has to get the kids to and from school, take them to their activities, deal with the household, etc.  That person is our nanny Melanie Poulson who has provided the integral support we need to deal with our situation.   We can’t thank her enough.

Status: 8.0/10.  Still feeling the lingering effects of Ara-C, mainly queasiness and something just short of nausea.  Fortunately the medications they now use make this much less of issue than in the past.

Events:  Officially, I am now neutropenic, which means essentially no white cells. I will remain that way for the next two weeks or so.  Although I am currently receiving oral and IV antibiotics, if I spike a fever during that time, they will add additional antibiotics.

Comments:  I must say, good-naturedly, that the physicians and nurses are reluctant to give you an exact answer to a question.  It’s always, “It depends.”  I realize that things vary, but if a Martian came to earth and asked how tall humans were, it’s not particularly helpful to say, “It depends.”  I’ve asked Lisa to purchase a box of Depends, and every time one of the staff answers a question in that way, I am going to hand them my Depends Award.

   Even without frank nausea, it’s difficult to mount an appetite.  My diet of late has consisted of popsicles; not particularly the best nutrition but you do what you gotta do.  As anyone knows, it’s a Jewish maxim that the cure for anything is food.  Along those lines, a nice woman from the hospital’s Jewish Visitors Network stopped in today with a small challah and a bottle of kosher grape juice.   I perhaps would have preferred a nice chianti.  

   I try to divert myself with reading material and the like.  Lisa bought me a new copy of Kitty Kelley’s Oprah, just the kind of trashy book that takes your mind off things.  I knew Oprah well in Chicago, since we worked at the same ABC station, and I even appeared on her show three times. Little known, I was the first doctor to put Oprah on a diet, and unfortunately I wasn’t successful. 

   I will have to report tomorrow on this evening’s last kick in the pants, the Mitoxantrone infusion.  They tell me I won’t feel much like doing any writing this evening.  But then, no more chemo during this hospitalization.  The drug’s effects last about 48 hours and either I or Lisa will report to you over the next few days.  I hope your next few days are filled with health and love.

   Love from me,

   – Bruce

April 29, 2010

4-28-10

 I have colorful and cheerful get well cards on the wall; always uplifting to look at them.

 Status: 8.0/10.

Events: Had a rough night  with night sweats and alternating chilliness and feeling too hot.  So didn’t get a good night’s sleep.  Felt kinda punky most of the day.  Lisa was here as always to comfort me.

   One of the nurses in doing her standard assessment looked at my throat and saw what can best be described as “spots.”  Small, less than a pencil eraser-sized, white, non-painful, perfectly round, sugar cookie-shaped things on the roof of my mouth.  Didn’t look like “thrush.”  The team came by, and I instantly became a teaching case.  None of them had seen anything like it either.  They swabbed it for bacteria, fungi, and viruses.  Nice to be unique, huh.

   Later, the cultures that are done routinely each Monday did come back positive for yeast (thrush).  Still don’t know what the UFOs are.

Comments:  Your orifices, the contact you have with the outside world, makes them a natural home for all sorts of micro-organisms.  Most of them harmless, living in a symbiotic relationship, and actually doing a lot of good by making it difficult for disease-causing bacteria to get a foothold.  Even fungi, including the common Candida albicans (the cause of thrush in the throat and the all too familiar yeast infection in women) take up residence.  Their growth is inhibited by all the good bacteria taking up space and nutrients.  But taking broad-spectrum antibiotics, like the ones I’m on, kills off all the good bacteria, and Candida has the playground all to itself.  To combat its overgrowth, they have me on a 4 times a day, liquid, anti-fungal regimen that I swish and swallow.

   My normal white cells are down too very low levels on their way to zero.  The likelihood is that without them I’ll soon spike a fever just from the normal bacteria in my body.   When that happens they’ll start additional antbiotics.

   It’s a common misconception that antibiotics cure infection.  It’s really your immune system and its white cells that do the battle.  Antibiotics are given so they can quickly reduce the bacterial numbers and make it a fair fight.  I have to wage war over the next several weeks with a reduced number of troops.

   Tomorrow is the last day of chemotherapy, but it goes out with a bang.  It’s a drug called mitoxantrone that’s infamous for causing hard shaking chills, what doctors call rigors (RYE-gurs).  They refer to it as “shake and bake,” and it leaves you feeling like you had the flu.  So Lisa may end up taking dictation for a day or two.  She’s a journalist par excellence and likely will put my words to shame.   They‘ll  give it  to me at 6 PM, so you may not hear about the roller coaster ride until Friday.

   Wish me luck.  Those who know my habits at theme parks will testify that I’ve never liked roller coasters.  Now I know why.

 Love,

 -B

April 28, 2010

4-27-10

 Neighbors have had the kids over for dinner, brought food to the house, taken them to activities, freeing up Lisa to be here with me.  They may seem like small things to those who were kind enough to do them, but they are huge favors we will never forget.  Each and every comment, each and every email, each and every touching note of love and friendship is of the greatest support right now.

 Status: 9.0/10.  Had another good day without side effects, in great part from the preventative measures that are taken nowadays to ward then off.  But for now, I’m grateful to getting one day closer to the finish line.

 Events: The 2nd day of 3 days of this phase of chemotherapy (by the way, just as I have taken the term “my chemotherapy” off the table, so have I dispensed with any cute  nicknames like “chemo.”  Nicknames are reserved for those with whom I have a warm fuzzy relationship.)   Had a long and helpful discussion with my attending physician, Dr. Doug Smith.  He’s ending his two-week rotation as head of service.  I’ll meet my new partner in arms tomorrow.

 Comments:   They encourage exercise to build strength (walking, there are no Nautilus machines on the floor), but I was blocked as I attempted to exit the ward today.  I had previously taken long walking tours of the hospital as they suggest, but this time I had chemotherapy hanging from my IV pole.  Of course, it makes good sense to prevent a bag of the skull and crossbones from spilling all over the cafeteria floor, but no one had mentioned that to us.  Had I not passed my nurse in the hall, I might have put others at risk.  I suggested that they place signs on the inside of the doors of all patient rooms, and on the door at the ward exit.  They said, “That’s a great idea, we hadn’t thought of that!”  I’ll whip these guys into shape yet.   

    Besides protecting others from me, they want to protect me from the bugs that live around here.  Over the last several years, there’s been a big push to raise the awareness of what infectious disease docs have long known, that bacteria are transmitted from patient to patient primarily on the hands of hospital staff.  Having to wash hands between patient encounters, which may occur hundreds of times a day, is difficult to adhere to, and has been a roadblock to good infection control.  But the introduction of alcohol-based, hand-sanitizing gels (like the ever popular Purell) has been a big boon in this arena.  They have a Purell station in my room, one outside the door, and dozens lining the wards walls.

   But hand-washing with soap and water remains the mainstay.  The alcohol may kill the bacteria and viruses, but only those it can get to.  It isn’t effective on dirty hands because the bugs are hiding in the oil and dirt we have on us.  But washing your hands isn’t as easy as it sounds.  As a matter of fact, there’s one area on the hands that’s often neglected … drum roll … it’s the right thumb (the left one on southpaws).  Watch yourself the next time you wash your hands.  And guess what we primates with opposable thumbs use the most!  So sing Happy Birthday twice, and give a big “thumbs up.”     

   A comment from great friend Judie Davidson about Ethan and MLK Day bears some expansion.  Ethan was in 1st grade, having been at his present school for 1 ½ years, and on MLK day they discussed its meaning.  Later, he’s riding in the backseat of the car with me, and referring to his good friend in school says, “Dad, did you know that Robbie is Black?!”  I almost broke out laughing, since I of course knew that Robbie had been Black from birth, but Ethan was totally unaware of it until they discussed race that day at school.  To Ethan, the only characteristic he could identify in Robbie was that he was a better soccer player.  Made my heart fill with pride.

   I have great pride in both my unbelievable children, and I am humbled by what Lisa is doing to keep us all going.  She is the rock, and I send her my love.

 Love to you all,

 -B

April 26, 2010

4-26-10

 So many have made such special offers of support, sent rounds of uplifting messages and get well cards.  It has been immensely helpful.  We are fortunate indeed.

 Status: 9.0/10.  I know it’s almost ludicrous to give myself such a rating especially with chemotherapy pouring into my veins for the last 12 hours, but I actually feel good right now.  Which of course demands the obvious question, “Then what the hell am I doing here?”  My laboratory values for general organ assessment (kidney, liver, that sort of thing) have come back into the normal range after getting knocked off-limits after the first 3 days of chemotherapy.  Two days of rest and having family here makes a lot of difference.  Interesting note – in my room is a Dell computer and a large 24” flat panel display.  The nurses enter all my vital signs, fluid input and output, access my lab values, track medications, and deal with all my other patient information right on the computer.  Gone, I guess, are days of a clipboard at the foot of the bed!

 Events: Today we started the next phase in the chemotherapy regimen early this AM, or as my attending physician says “the real stuff.”  The mainstay of treatment for my type of leukemia is cytosine arabinoside (SIGHT-oh-seen uh-RAB-uh-no-side), also called cytarabine or Ara-C.  I’ll receive it 24 hours a day over the next 3 days.  It’s highly toxic to cells, with the intent of doing the leukemic cells some serious harm (unfortunately, the rest of me is what the military refers to as collateral damage).  It’s distributed to all body fluids, and even comes out in tears, so I’ve already started receiving cortisone-like eye drops to lessen eye irritation. 

 Comments: Cytosine arabinoside works by disrupting the copies of DNA in a cell when it tries to divide and multiply.  Watson and Crick won the Nobel prize for discovering the chemical structure of DNA, that famous spiral-shaped ladder.  Each rung of the ladder is composed of a pairing of two of four molecules: adenine, thymine, guanine, and cytosine, simply referred to as A, T, G, and C.  The new Director of the NIH and former head of the Human Genome Project, Dr. Francis Collins, refers to DNA, “as made up of that simple 4-letter vocabulary.”

   It turns out that on each rung, A is always paired with T, and G with C.  So imagine painting the rungs of a very long ladder (half a rung at a time) using only 4 colors, say red, yellow, green and blue – and with the restriction that on each rung the red half is always paired with a green half, and blue with yellow.  If you looked down the ladder you’d see a monotonous series of rungs, red-green, yellow-blue, green-red, yellow-blue, and on and on.  Monotonous, yes, but that unique pattern is the “genetic code” that makes you, you. 

   Now, say you used a chainsaw to cut the ladder right down the middle, leaving two fairly useless, yet nicely-colored, half-ladders with their half-rungs sticking out.  But you could fix things by going to Home Depot and buying two long pieces of wood (the same length as the ladder) and a bunch of rungs.

   Cut the rungs in half and glue them onto the long pieces of wood making two unpainted half ladders.  Place them next to, and glue them to, the previously painted half-ladders.  Paint all the blank half rungs, making sure to follow the rules of red to green, blue to yellow.   Voilà, you’ve ended up with two ladders that look exactly like the original (if you’re worried one is the opposite of the other, just flip it over – they’re identical twins).  You could play the chainsaw game over and over, and as long as you had access to a Home Depot and a credit card you could make as many copies of that first ladder as you wished.

   And that’s the same game DNA plays when it wants to make a copy of itself, but with A, T, C, and G – unzipping its spiral length into two half-ladders and attaching those 4 letters, making two copies of itself.  [Note: mutations occur when you paint a wrong color, misalign the two half- ladders, or mistakenly add or delete a rung].      

   But what if instead of the real C (cytosine) you provided a supply of a wrong-sized lookalike molecule (cytosine arabinoside) just as though you had bought wrong-sized rungs at Lowes.  You’d end up with a faulty ladder (bad DNA).  And in this case, a dead cell, if it tried to divide and copy itself.

   Leukemic cells are dividing rapidly, and most other body cells are dividing much more slowly, so the leukemic cells are at special risk for this kind of attack.  So you’d be attempting to use a laser-guided missile to knock out a target while hopefully cutting down on collateral damage. 

 So that’s the plan for this next phase, with the hospital staff trying to help me duck and cover from the missile strikes.  We’ll give you a daily bomb damage assessment and how the troops are holding up.  Root for the good guys.

 Love,

 -B

April 25, 2010

4-25-10

 Status: 9.5/10.

 Events: Spent a quiet day with Lisa and the kids.  Good friend Daniel Fischer brought over most of the magazines that are published in the U.S. 

 Comments: At the suggestion of super cousins Freddie and Reggie Bushkin, whose advice has always been on the mark, I’ll make today’s report brief, and enjoy my time with family.

Love to all,

-B

April 24, 2010

 

4-24-10

Everyone has been so generous with their thoughts and good wishes.  I read every email with great enthusiasm, and each one has been invigorating to my spirits.  I hope it’s understandable if I don’t respond by email to each one individually, but I do so with my heart.

Status: 8.75/10.   Little worn out from all the trips back and forth yesterday with drug-induced GI distress.  That Imodium guy deserves a medal.

Events: No chemo today.  The continued blood drawings have lowered my red cell count to the extent they need to give me 2 more units of blood today.  Reminds me of a fraternity party we had in college with the requisite beer consumption (long before the enforcement of underage drinking).  One of my fraternity brothers was consuming his fair share throughout the evening, and late that night after the party was over I saw him in the bathroom standing over the urinal, head leaning against the wall, and pouring a can of beer into it.  Astounded, I asked him what he was doing.  And with remarkable perception percolating up through his inebriated haze he said, “I’m eliminating the middleman.” I’m just the middleman between two of Hopkins’ laboratories.

   My white cell counts have dropped dramatically as well as the number of my platelets from the chemotherapy.  The medical team says, “As we expected,” but the numbers are a little shocking to anyone who doesn’t see oncology patients every day.  The normal platelet count is 140,000 – 400,000 per cubic centimeter (that’s a 1/5 of a teaspoon to you and me), and mine are down to 15,000.  If they drop below 10,000 (as they’re sure to do) they’ll give me platelet transfusions.

   Lisa and Ethan came up this morning.  Rachel was brought up by dear friend Wendy Yaross this afternoon.  We’re listening to Tchaikovsky’s 5th symphony and Chariots of Fire – that’s a great day by any standard.  They’re such creative and talented kids.  Both are incredible writers with insight and nuance.  And Rachel’s poetry rivals any laureate – way beyond her years in maturity and awareness.  I remember when Ethan was just 7 or 8 and remarked that something was, “As quiet as a cul-de-sac.”  Awesome.  

Comments: The 3 main components of blood (red cells, white cells, and platelets) can each be individually separated from whole donated blood using a number of methods differentiating them based on their weights.  If you take a sample of blood collected in a tube with some anticoagulant and then spin it in a centrifuge you’ll see a bottom portion of packed red cells (representing the donor’s hematocrit), a top portion of straw-colored plasma, and in between, floating atop the red cells like the mist in Macbeth, a gossamer-thin layer called the “buffy coat.”  It’s mostly composed of white blood cells.  Of course, real separation is a little more sophisticated but based on the same principle.

  If you look at a stained blood smear under the microscope the platelets are tiny violet-colored little “plates.”  I was astounded the first time I saw a bag of platelets hung on an IV pole readied for transfusion.  They weren’t violet at all (duh!).  They have an ethereal, peachy-orange color – close to the sky just before dawn.  [And as an aside, that reminds me that I read a physics article once that said researchers were able to determine the color of an electron.  Yes, that’s right.  If you could collect a bunch of electrons together they’d look blue.  Blue.  Isn’t that remarkable.]

  I’ve always been intensely affected by color.  And that almost overbearing sensitivity has been frustrating at times for Lisa when we’ve had to pick out fabrics or furniture.  I’d say I didn’t like something because it was too brown or not green enough, and she’d say, “Ignore the color, we just need to know if you like the shape.”  But I was always unable to separate the color from the task at hand.

  My favorite artist is Monet, and I’m just crazy about his late works that are strikingly wild splashes of color.  Some have speculated that deteriorating eyesight may have been responsible, and that was the way he actually saw the world.  If so, what an extraordinary gift from a disability.

  And one last remark about color.  While I was reporting medical news for ABC in Chicago (perhaps the best city in the U.S. if you discount January and February) I was asked to audition to be the host of Newton’s Apple, the science series on PBS.  The host reads a question sent in by a viewer, and then proceeds to have an expert answer it and expand upon the topic in a fun-filled and engaging half-hour.

   The program’s producers would screen the audition tapes with an audience to see if they liked the potential hosts.  Turns out I didn’t get the job, but I’ve always smiled with some satisfaction after the producers told me why I wasn’t selected.  They said, “We thought you were great and would have picked you, but the audience didn’t find you believable asking all those naïve questions, they were sure you already knew the answers.”

   Although I lost out on the hosting job, I was asked to be the medical “expert” for the show, and had a great time appearing on the program for 5 years.  The program I most enjoyed was entitled, “Why is Blood Red?”*

  I don’t have all the answers yet for the current episode in which I find myself, but I’m sure I can figure out how to ask the right questions.

 Looking forward to another good day tomorrow with Lisa and the kids.

Love,

-Bruce

* The answer to the question is that blood is red for the same reason that rust is red – iron oxide.  The iron in your red cells’ hemoglobin combined with oxygen gives it its characteristic crimson color.

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April 23, 2010

4-23-10                  

Today’s my Dad’s 89th birthday.   Happy Birthday, Dad !

Status: 8.0/10 (The Russian judges are particularly strict, especially after noting the gastrointestinal side effects of the first 3-day course of chemotherapy.)

Events: Had a small headache last night.  They asked me if I wanted anything for it – reinforcing the fact that they’re not looking for brave souls around here.  If you start to have a headache, or nausea, or anything that might get worse over time they want to jump on it quickly.   Awakened at 4 AM by increased gastrointestinal motility (if you don’t know what that means you can look it up – we’re trying to keep this thing at least PG-13).  The ensuing scene of me trying to move from bed to bathroom, in the dark, with an IV pole, flapping hospital gown, beeping pump alarm, electric cords, and stool culture sampling kit could only be replicated by Peter Sellers in his prime.

   Received 2 units of blood as my hematocrit had dropped to 21.  The cadre of vampira had finally drained me almost dry.

Comments: They’re holding off on giving me some helpful Imodium until the laboratory confirms I’m not having GI problems due to a bacterium called C. difficile.  “C. diff,” as it goes by, is an especially bad bug.  It’s in the same family as the bacteria that cause tetanus, botulism, and gangrene.  All do their damage by making toxins – and in C diff’s case, inflammation of the intestinal wall.  The microorganism has become a significant problem in hospitalized patients, especially in folks who have been on broad spectrum antibiotics.

    Before you can receive a blood transfusion, they check to see if the donated blood matches your own.  By match they mean that the body’s immune system won’t label it as foreign and reject it.  Because we are all different genetically, the cells in our body have their own unique identifying characteristics – just like everyone at a large business convention has their own name tag.  You can quickly look at a tag and tell if someone is a member of your company or a competitor.

    Red blood cells have their own special types of name tags.  They were discovered by Karl Lansdteiner more than a hundred years ago, and he simply called them A and B.  All of your red cells are either type A, or type B, both, or neither.  If they are both, we call them AB, if neither we call them O.  And just as competitors at the convention aren’t going to let you into their cocktail party after eyeing your name tag, your immune system isn’t going to accept a red blood cell if it conflicts with your own type.  So if you have type A blood, you’ll match only with another A, or an O (they’re treated like the waitstaff at the cocktail party – they mingle around but are of no competitive threat).  AB types will party with anybody (they’re happy to see a name on the tag they’re familiar with), but the O types won’t party with anyone else – they’re just supposed to be serving the hors d’oeuvres.

   Later, it was discovered that there was another factor that mattered, too.  It was found  by working with Rhesus monkeys and called the Rh factor; that one you either have (positive) or you don’t (negative).  So your blood will be labeled A+, or perhaps AB-, or whatever.  Giving mismatched blood can cause a serious transfusion reaction, and it’s why they try to be so careful when giving blood in the hospital.    [Note: my transfusions today must have matched well – no problems]

   As much as I have confidence in my doctors, I’m somewhat distressed that they don’t seem to share as much information as I want about my status, lab values, etc.   I realize that they are likely acting in the usual rubric they use with their lay patients, but I’m going to speak to them and relate that they’ll have a better outcome if they include the real insider on the team. 

 I’m looking forward to the weekend, no chemo, and most important, the kids will be here.  That’s better than any meds they could come up with. 

I hope your weekend is just as good.

Love,

– Bruce

April 23, 2010

4-22-10    PM (2 of 2)

 The outpouring of good feelings is so overwhelming and helpful, we can’t begin the thank you enough.

 Status: 9.0/10 (Had a good day despite my chemo infusion this morning)

 Events:   Had the 2nd dose of chemotherapy today (I had originally written “had my 2nd dose,” but I decided this wasn’t my chemotherapy, and that I will not use that term in these descriptions again.  I am terribly (the correct use of the word) appreciative that it exists, and that I can avail myself of it, but it’s just my little way of defying gravity.

   Had some good news.  The initial analysis of the leukemic cells showed that their chromosome signature was grossly normal, 48 chromosomes, specifically the normal human 46 and an X,Y pair (women have 46 and an X,X pair).  A sign of high-risk disease is to have a major chromosome loss or a transposition (one piece of a chromosome switching places with another). If the absence of bad news is good news we’ll take it, and we’ll take anything we can get.

    My normal white cells and platelets have, as expected, dropped as a result of chemotherapy.  The number of my disease-fighting white cells will soon drop to zero and stay there for awhile, but the team will watch them closely and deal with the complications that will no doubt ensue.

 Comments: My good friend, colleague, and vaccine guru Dr. Marty Myers made a suggestion that I comment on what it’s like viewing the doctor-patient experience from the other side.  Marty heads up the National Network for Immunization Information (NNii), and you can obtain the most accurate and comprehensive vaccine information at their site www.immunizationinfo.org.  Marty has been kind enough to let me sit on the organization’s Steering Committee and learn from the real experts.

  Yesterday morning I was visited, as I am almost every morning, by the rounding team. Doctors make “rounds” whether they are actually moving from patient room to patient room, or checking the day’s lab reports, “chart rounds”, or sitting in an amphitheater of a medical university listening to an expert, “Grand Rounds.”  Hippocrates was the first recorded physician to make rounds as he would go from patient to patient making diagnoses and prescribing treatments.

   The almost universal, choreographed dance is performed as the group enters the room in an unspoken, but well-defined, pecking order from most senior to the lowest rank.  I remember well, as a 3rd-year medical student, making afternoon surgical rounds.  At the head of the line was the chief of surgery, then attending physicians, next came the Chief resident and surgical fellows, senior residents, junior residents, interns, 4th year students, 3rd years, then an assortment of dieticians, nurses, pharmacists, social workers, and on and on.  The line was so long that those of us at the back often never got even close to the patient’s room.  We’d spend an hour or so standing in a different part of the hall never seeing the patients, never hearing the supposedly erudite teaching discussions.  It was as best as I can describe it, a moving experience.

   My team yesterday came in as proscribed (at least with everyone physically in the room) but without introductions, without any offering of social graces or pleasantries.  How different it would have been if they had said, “We’re your medical team, and we’ll be taking care of you during your stay here.  Let me have everyone introduce themselves and tell you what they do because they’ll be integral to your care.”

  They did not mean to be rude. They were just getting rounds done quickly and efficiently.  They, like thousands upon thousands of other health care professionals, were busy taking care of business – and forgetting what it must be like to be the patient. In all fairness, it’s difficult to walk in another person’s shoes.  I can be an ardent feminist, but my wife would tell me I have no idea what it’s like being a woman.  I can be an enthusiastic proponent of multiculturalism and diversity, but I have no idea what it’s really like being a person of color.  But I believe we must spend more time in medical training getting those who take care of patients to understand what it’s like to be one.    

   While the doctors may stand comfortably by the bedside thinking of the next patient, or the next task, or where they’ll go for dinner, the patient lies there anxious, fearful, or perhaps in pain.  Doctors who can empathize with those feelings and concerns may help the patient get better quicker.

   I am of course hoping to get better quickly as well.

Love to all

-Bruce

April 22, 2010

4-22-10    AM (1 of 2)

 Lisa and I cannot tell you how comforting it is to have your kind words, your support, and your personal offers to help out – it eases so many burdens.  We are truly grateful to have our family and such good friends.

 Status: 8.75/10.  (Much better this morning after I spiked a fever last night).

 Events:   Yesterday evening (after my first day of chemotherapy), I had a shaking chill, muscle aches, and what I knew was shortly to develop into a sudden fever.  Most likely a reaction to the chemo, but the staff doesn’t fool around with that kind of stuff around here.  Wanting to make sure it wasn’t a reaction to a bacterial infection they immediately ordered a chest x-ray (looking for pneumonia), blood and urine cultures, a physical exam, and IV antibiotics.  I was able to finally get to sleep (but not without frequent awakenings for vital signs during the night) and feel better this morning.  There are few things in life that can’t be fixed with either duct tape or a good night’s sleep.

 Comments: When the nurse walks in the room bringing in the chemotherapy, she’s wearing a mask and face shield, a gown, and thick gloves.  The IV bag of chemotherapy fluid is wrapped in several pads, which she carefully lays on the floor away from anything in the room.  The bag itself has the words “danger” written prominently in boldface type both in English and Spanish.  There is a black skull and crossbones on it.  And then she inserts the fluid into your bloodstream.

    Having donated most of my blood, vial by vial, to the Hopkins laboratories, they’re going to give me a couple of units of blood back.  Doctors measure the amount of red cells in your blood as a percentage, that’s because most of your blood is actually a straw-colored fluid called plasma.  It’s mostly salt water, but it contains a host of substances including proteins, fats, and other chemicals that are being transported throughout your body with each heartbeat.

     Normally the proportion is actually made up of just red blood cells is in the range of 35-45%, varying between men and women.  Doctors refer to this percentage as “hematocrit” (he-MAT-oh-crit) or in the lingo, simply “crit” as in, “I hear the patient’s crit dropped.”  Mine is 25, so I’m due some payback.  They’ll give me, as they do most people who get a transfusion, pure red cells without the extra plasma.

    When I was working in Chicago as an editor at JAMA, a colleague and good friend brought my name to the attention of the news director at the ABC station (WLS-TV).  He said he wanted to give me a job, but I told him I already had one.  He insisted we go to lunch, and after several of these visits he said, “I know you, you like to teach.  I can give you a very large classroom.”  He found my weakness, and while still working at JAMA, I became the medical reporter at the station (and it was that connection that led to me to meeting Lisa at her job at the ABC station in San Francisco, perhaps the most important event in my life).

  Lisa was here by my side last night when I was feeling bad, holding my hand and rubbing my back, bringing more comfort than all the antibiotics and other ministrations I received.  She is a truly remarkable woman, an extraordinary person, and the love of my life.  She drives up each morning from Bethesda to Baltimore after getting the kids off to school, becomes my patient advocate (and not surprising to anyone who knows her well, she already has compiled a 3-ring  notebook that would make a NASA launch protocol look skimpy), then drives back each evening to be with the kids.  We’re trying to keep their lives as normal as possible with all of this, even installing Skype on both our home computer and on my laptop here in the hospital.  I video-conference with them each morning as they head out the door and before they go to bed.  What enables me to put up with all this crap is looking forward to being home with them.

    I’ll update everyone this evening on how the day went.

 Love,

-Bruce