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Say what?

October 27, 2010

Anyone remember that phrase from circa 1973, you know in Rick James’ Give it to me baby. Yes, say what?

Well, I sort of said that, when I took Isa’s temperature today.  39.5.  “Say what?”  Today we planned on getting a CBC to see if she could start chemo again.  I had no idea that I’d be sitting “on the top floor” as Isa and GG call it.  Inpatient, say what?

Last week the charge nurse reminded us that if Isa’s counts were too low and if she presented with a fever that we’d need to be admitted. We escaped last week, but not this week. Her NP walked toward me with the counts sheet stating that Isa’s ANC was zero (0). Say what?

This time I had packed a bag. Socks and panties galore!  BUT, only one pair of jammies. Money says to me, “you brought the kung-fu pants? ”

I say, with obvious disdain, “yeeah.”

He says, “They have a hole in the butt.”

I didn’t say it but you could  infer what I was thinking right?…….say what?

They are my favorite pants, that don’t belong to me. Somehow I’d missed the hole before.  Fuck it, I am wearing them anyway.

Yesterday, Money and I went out to dinner. I am not talking burgers  or pizza, I am talking a bonafide grown-up dinner with wine glasses, cloth napkins and espresso.  So much fun, I almost felt normal. Well, maybe not normal but like a regular weirdo instead of a cancer-mom-weirdo.  And today at 11:30 I was viciously reminded, once again, that I am still the latter.

Isa sat in her  car seat barely saying a word for the entire two hour drive. The nurses had directed us to abstain from giving any Tylenol. Because it brings down the fever that they want to chart.  So we popped into the outpatient center and  at hefty 39.5. After a week Isa had gained some weight, 16.9 to 17.4.  Say what?  Steroids + Eating = agro-bulky 5yo.

Play by Play

  • 9 pm Tuesday Isa’s temp 37.9
  • 11:00 am Wednesday Isa’s temp 39.5
  • Call to hospital ends exactly as we knew it would >>>>  Bring her in.
  • We get to cut the line in the waiting room leading to a pissed off hematology mom who didn’t understand that tiny cancer patients with 103° fevers get to snake.
  • Hunkered down in the cave (what the nurses call the area we were in.) I sort of like the cave cuz it’s small.
  • LMX cream on the port and the peripheral (Two cultures from two sites, the port and an extremity)
  • Administered Rocephin, ‘the hopeful we’re going home antibiotic’ that they give to kids whose ANC should not be ZERO!@@#%%
  • Isa received a dose of tylenol to bring down her fever. For some reason now that they charted it we can give it to her.
  • Isa poked and prodded by NP which lead to insanely riotous discussion about farting, yet yielded no other useful info.
  • Isa had a chest ex-ray that we were told was “clear”
  • Isa started on our favorite every six hour antibiotic Zosyn
  • Paperwork done and the lovely clinic nurses walked us over to the room. YAYAYAYAYYA bypassing ER!
  • Barely hunkered down in our room when Isa demanded Papa go to The Deli to get her a corned beef sandwich.
  • Isa eats entire sandwich then asks for more food…..say what?
  • 38.9 Fever leads to more Tylenol
  • We wait for the Holy Trinity—no fever, ANC up, negative culture growth.

Reminders for the hospital

  • It ain’t over ’til it’s over.
  • pack non-holy or is it non-holey jammies
  • eat corned beef…. wait i didn’t do that, what kind of reminders are these, say what?
  • Watch the nurses do everything and ask a lot of questions. These medical people will only tell you the information that they deem necessary so any extra you gotta pump them for it.
  • This goes for blankets as well. They will not offer sheets unless you ask, or non-holey  grown-up pajamas (which they did provide, when asked)
  • You CAN say no.  Remember that you can always say no. Sometimes you have to say no more than once for them to understand. (Medical staff can be worse than toddlers on this point. and sometimes you just have to give in)
  • They will ALWAYS CHART THE HIGHEST TEMPERATURE!!!  And some nurses will go out of their way to take a second or third temperature until they get one that “seems right”
  • Ask lots of questions even though you think you know the answer. Sometimes different doctors will give you new information.
  • It is okay to ask for a different nurse if the one you have bugs you.

Reminders for long-term maintenance

  • If the docs up the dosage on any medication WASH your hands, keep the ANC lowering viruses away.
  • Keep the sugar at grandma’s and your kids at home. No seriously sugar lowers immunity and if there is an increase in medication make the diet super healthy to give the body a chance. So keep the sugar out of their diets
  • water water water, keep the kids hydrated and NOT with juice, coffee, soda or milk, just filtered water
  • wear fancy pants as often as possible it could make you feel less like a cancer-mom


4 Comments leave one →
  1. Lisa permalink
    November 16, 2010 3:32 pm

    THANK YOU THANK YOU THANK YOU!!! This blog is amazing! And so informative I always forget to ask questions when I’m with he docs and always end up calling later. We spent seven weeks in the hospital when he was first diagnosed due to port placement failure (we almost lost him that night, and three more times in the following week due to septicemia) thank you for making my holey stained hospital pants seem “normal”

    • November 18, 2010 5:36 pm

      I am so glad that you found solace in this blog. The exact audience I am looking for. Good luck on this journey. I’ve heard that the protocol has changed somewhat.

  2. ALTP permalink
    October 28, 2010 10:56 pm

    You are so informative. I wish I could see your kung fu pants. Hugs & prayers all around. I wish you weren’t updating your posts everyday because that means there is something to update. Waiting for the update that says, “HOLY TRINITY! ANC UP, FEVER DOWN, NO CULTURE GROWTH!

    Say what?

    • October 28, 2010 11:02 pm

      you can see my pants, if i get locked in here i may need visitors… there’s only two little people videos and for some reason Isa loves them.

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