The Lab Made a Mistake-----

Date: November 8, 2002 
      I have the story for the START of Thursday - how we got out of the house for the weekly chemo run - on the other computer---.
      I am not able to lift it and turn it on.
      Get it later.
      It is Friday now and I am fragile and shattered.
      And very, very distraught.
      I have had coffee and chocolate all day long.
      You see, yesterday was a trip straight to hell.
      First, we got a peripheral blood draw at the hospital.
      She dug around, not a clean draw. I hate that.
      I was refraining from attacking people, per my son's request.
      Too bad!
      I should have.
      They tend to be sloppy.
      We went to the day hospital, and I left him babysitting my rolling bag and computer (I have work I need to do) and went for my every-Thursday cafe mocha Grande decaf non-fat no whip Starbuck's coffee.
      We waited. And waited.
      This is a STAT lab.
      After 100 minutes, the labs were partially back. Seems they had sat for an hour before check-in. STAT? Sits?
      Another 20 minutes, and they had checked my son in and put us in a room, and accessed his chest port. That, at least, went smoothly.
      The counts look good enough to go as soon as the final came in.
      I make him Pasta Anytime. He is on Steroids this week - and eats like a hog.
      I ordered the GCSF.
      I got out my work, my laptop, and moved furniture around and set up. It will be three hours from start to finish for this chemo. I plan on getting salads for lunch. And to finish the typing later at home. With luck I can do the pile of laundry staring at me from the hall as well. Beauty of working at home - coffee breaks become run the dishwasher, run the wash, run the dryer, hang up something. I miss that pasrt of my old job.
      Well, the final counts came in. I think all is well. I think we can now get the show on the road so to speak.
      Nope. Seems his platelet count had dropped from 110,000 to 5,000.
      I said - "He looks too good - I don't believe you!!!!"
      For the uninitiated, low platelets means that you have bleeding gums, red spots under the skin (they have a name I can't spell - piticulite? ) and other signs.
      He has none. They check. They shake their heads.
      He can't have chemo.
      No!
      I argue - "this cannot be!"
      "Maybe there is a mistake!"
      Denial. Denial.
      He has, in fact, to an accuracy of 50-50, relapsed, they say. He is sanguine about it.
      They need to do a platelet transfusion (he's had them before).
      They need to do a bone marrow test. To help them figure out what to do next.
      Except I just fed him spaghetti so he is not NPO (nothing by mouth) which he needs to be.
      Then they said they want to do a spinal test too.
      Two doctors running in and out.
      They were letting me digest things.
      They said my face showed the stress. I'll bet.
      The doctor ran over to the lab (because I was so insistent there was a mistake) and looked at the slide. Nada. No little cells. NONE!
      The social worker came in.
      I nearly bit her head off. I do not want my hand patted.
      I am not civil at the moment. I am doing things step by step.
      I know what this all means. Perhaps better then they think.
      There are other causes for these levels - listed and discarded.
      Relapse. An ugly word.
      The Leukemia is back, they say, without saying it.
      We need to do these tests.
      We can know in an hour after them what is going on.
      Then we can talk about what to do------
      I call and leave a message for my older son.
      I try to call Pepper. (Who, it turns out, had stayed home with a bad feeling and was on the phone only once or twice. Her line was busy. I reached her later.)
      They want to call someone for me.
      No.
      I have left messages. And besides, Fabio is 500 miles (or more) away so there is no one to hug me.
      The nurses want to get me something, do something, anything, but I am a bundle of broken glass - touch me and I would go to pieces.
      I try to stay isolated.
      He will be screaming during these tests - they can't knock him out since he ate - and they won't allow me to make him vomit (I had suggested it - fingers or IPECAC) - so I need to be together to hold him and do what I can to get him through the tests. I've been there, done that before. I am not happy about it.
      I drink a bottle of cafˇ mocha lite. My second coffee.
      I eat a Lite Bite bar. Last edible food in the bottom of the rolling case. Gag!
      I have a banana. Squished. Also from the bag.
      I sit.
      I cannot type.
      I cannot work (I had put the computer up before they came with this news.) I put the work away. I put the computer off to the side.
      I cannot read.
      I sit and hold my child for the next two hours. We cuddle and rock back and forth on the bed. I have my arms wrapped around him, my chin over his shoulder sitting behind him on the bed. He allows this. He needs it too.
      We watch Ricki Lake who has strippers on. Why not.
      I had wanted a retest of the blood. They had said "Maybe a blood clot - which would cause the little platelets to clump up. And the lab had taken pver an hour just to check in a STAT test. Lovely. My son had, on seeing me shattered, told the nurse, "What the heck, I'm already accessed. DO another blood test."
      They sent a second test over.
      I had battered him this morning - "You need to figure out how to live! I won't be supporting you the rest of your life! I'm going to die and then what will you do! You have to go to college! You have to pick a career! Etc. etc. etc." All this since he is supposed to leave home in August, 2003. (Chemo is supposed to be done in April 2003.) And he is not ready.
      He is lazy (and proud of it), hates to read (Dyslexia) and has no passion.
      He's still stuck at 17 - wants to leave - wants to stay. He's "Boy Interrupted."
      Now I want to bite my tongue.
      "Guess chemo will go past April," I say.
      My mind is bouncing around. The trip to Hawaii. The cruise to Alaska - I have promised both.
      The nurses are in and out tending the IV - no or little conversation.
      Tip toe. Everyone is subdued.
      They have nearly completed the platelet transfusion.
      He has had Benedryl.
      They put the Amlok patches on his back and goop on (prep for the local). This keeps the initial needle from hurting - too much.
      He asks, watching them getting ready to bring in the procedure trays, "What are the results?" I am checking out the rolling table and pillows for him to lean over.
      The doctor goes to call while they set up for the tests.
      Preliminary results are back.
      91,000.
      Say what?
      The doctor has them repeat it. They said. "Isn't this the patient who -----" Yes, it is.
      The platelet count is actually 94,000. OK since Vinchristine was last week and he had no GCSF.
      The CBC results are different too.
      The doctor rushes back to tell us, dancing into the room, sucking on a lollipop. See's.
      He's fine.
      He gets his chemo.
      The nurses are all smiles. They tell us to "go back to picking on each other".
      They have "prayed to every deity in reach".
      I call my older son - and reach him.
      He says I sound like hell and drives over. I do.
      I am more fragile than before. Stunned disbelief at the error. And the magnitude of the results.
      It's an adrenalin crash.
      They have finished the transfusion of unneeded platelets. That put him at risk for no reason.
      Needless to say - I am in a bad state (4 hours of hell - and then stuck there for three hours of chemo).
      It will take a few days (and a few glasses of wine----- or something stronger).
      We are now an "incident" - the doctor filed a report.
      I am demanding a refund to the insurance company for the blood work and lab work
      For the blood transfusion too.
      My older son came - they gave him a parking pass (charged it to the lab) - I gave him dinner and gas money.
      He came because he said that I sounded like I was coming apart (I was. I am.).
      Dear God in heaven - by now I was barely holding it together.
      Got no work done needless to say------.
      My baby is FINE - perky and giggling and walking much better they say.
      Why I just couldn't believe he had relapsed.
      I fetched him food. Chicken sandwich from the grill. I had nuggets. I had carrot cake. (Not enough sugar.) Went back down with the older child and got him food.
      I had a third coffee.
      I found a tootsie roll. Little. Something.
      There are a lot of us sipping wine tonight - the nurses were freaked.
      We agree to all be virtually connected - red wine tonight!
      He is beloved all over the hospital.
      By 6:15PM, I start home and my older baby goes back to work.
      We have closed bridges and trees down - pouring rain and lightning struck not 100 feet in front of us - taking out street lights in the University area.
      BRIGHT flash - sparks all over - lights going out.
      Weird! Pretty but weird.
      (Some said God was mad at what had happened.)
      I drove over a curb with the van and ran up Willow until I found lights again. I got to the Dunbarton bridge. By the time we were home, the Bay bridge had no lights. Another bridge was closed for high winds (It's up in the air - the one I would scream all the way over when transporting Boy Scouts).
      I have had a big bowl of ice cream and chocolate sauce, a thick slice of cheese, two glasses of red wine, a peanut butter cup, and 1/3 Cup walnuts,.
      Looking for more booze at the moment - I can't "get down".
      I keep reaching out and patting him
      We watched TV (CSI and Without A Trace) with his feet up on me and mine on him.
      I am still shattered.
      Whose counts did we get?
      And what happened to the person who got ours?