Roller -- Coaster

The past two weeks have been grueling, although Thanksgiving day was a welcome respite from all that preceded it.  After a rocky start last Monday, Jim finally had numbers high enough to allow them to do the first apheresis.  All week his blood counts kept improving (okay, so they kept pumping platelets and whole blood into him to bring the counts up!)  Friday, he had improved dramatically (the platelet count had gone from 1 to 43 *(50 being what a healthy person has; it has to be 30 to try to harvest he stem cells).  We were feeling just a little cocky, having such success in the blood count department.  But then a call came from the hospital, saying this Monday they will evaluate whether he may continue on pheresis because the amount of stem cells he is producing is inadequate.   Back down the in the emotional elevator shaft to the basement. Bump.  This isn't the end of the effort to do a stem cell transplant.  It just prolongs this agony and throws question marks all over the place.

As a side note, Jim's hair is about 75 % gone, including a lot of his beard.  He is handling this with the same philosophy he long ago espoused regarding snow removal... God put it there, he can take it away.  However, he is leaving a Hansel-like trail of whiskers everywhere he goes.  I saw his clean-shaven face for about 4 months in 1968.   Then he grew the beard, and he hasn't seen his actual chin since. Our kids have never seen his face before. With it falling out at a rate of 60 strands a day, a more torturously slow opening of a dubious gift there never has been.

For my part, the "Mom" gene has prompted me to start carrying (dragging, actually)  a huge quilted bag containing all the goodies anyone could possibly need, from peppermint flavored dental floss to gluten-free cookies to juice boxes. A sticky lint-remover is perfectly gagging on the all the hair falling on the collar and front of Jim's black top coat.   Speaking of an exercise in futility!  I have reading material, writing material, a hypodermic needle with Jim's Neupogen shot, rolls of coins,  and a gas mask. (not really... just checking if you were paying attention!)  I also am regularly rummaging around the bag trying to find my nemesis, the damned parking garage ticket. Unless it is stickered by the receptionist, it will cost more to get the car out than we originally paid for it.  And because I am somewhat distracted these days, (!) my inner masochist never puts it in the same place twice.  So into the bag I dive, thinking how handy a miner's hat with a light would be.  Then come the little prickles of sweat on my forehead.  What happens if you can't produce a ticket? Irrational panic sets in;  I am fretting about getting the car released while Jim is getting another unit of platelets.  Priorities, Linda.  Snap out of it!  

Once in the cramped pheresis unit, I sit as compactly as possible... not unlike flying economy class on a cross-country flight.  Quilted bag tucked under my chair, coat under me, purse hanging from the side of the chair, glutes contracted to reduce the overall profile.   The temperature in the unit averages about the same as the surface of the sun, so periodically I leave to grab a gasp of cool air.

It strikes me that cancer is the perfect example of Political Correctness.  In the unit, there is a girl with a guide dog on the floor next to her bed. In the bed next to Jim is a young guy, not yet thirty, I would guess, immersed in typing on his cellphone.  A woman patient, speaking in a somewhat loud voice orders lunch on the phone, specifying gluten-free. My ears perk up.  Turns out she has been gluten-free for 12 years.   Her lunch arrives.  The frankfurt looks like a shriveled finger, the roll is shedding lots of crumbs on the plate; she is NOT a happy camper, and doesn't much care who knows it.  That's the thing.  This experience of being ill can drag down a usually cheerful person, but it rarely improves someone who starts out miserable.  Still, I am amazed by how, at least on the surface, people go about their visits with dignity despite baldness, and consideration for others even though wearing a face mask interferes with their oxygen line.   It really is a testament to the human spirit, because there is enough aggravation inherent in this business of being devastatingly ill to push anyone's buttons.   I'm beginning to understand why it is hard to name the real heroes.