Thursday, October 13, 2011

Good News, Bad News: The Sequel

The good news is, I know how to do this.
The bad news is, once was enough.
The worse news is, once was not enough.

The good news is, I'm back under the direct daily care of one of the best AML teams in country.
The bad news is, I need to be back under the direct daily care of one of the best AML teams in country.

The good news is, the menu has a new insert including everything I asked for during my previous stay.
The bad news is, making fun of the food was one of favorite passtimes.

The good news is, I know how to do this.
(Also, there's a treadmill.)

= = =

We don't have final results from the biopsy yet, but we have enough information to know that, without a change of plan, the leukemia would eventually win. Unlike the initial diagnosis, this was not a complete shock. We knew this was a possible, maybe even probable, explanation for the behavior of my blood counts. It is still hard news to hear.

Anyway, I am back in Chicago for a different mix of chemo drugs than we used before. As was the case nine months ago, the first goal is to knock down the leukemia. Depending on how that goes, there are several possible paths: another round of chemo, another stem cell transplant, a donor lymphocyte infusion...

With so many possible paths, I don't have a handle on how long I'm going to be here. I know the plan for tomorrow — start the chemo. Four days later, end the chemo. Then some waiting.

There is a lot that is familiar, which isn't surprising considering I spent nine weeks here at the beginning of the year. Coincidentally, my first nurse this time was my first nurse the last time. I remember many of the other nurses and staff on the floor. As before, a good night's sleep is a fantasy.

  • 12:00 a.m. Admitting doctor makes final decisions about evening medications.
  • 1:15 a.m. I get stuck for a blood draw.
  • 1:20 a.m. I ask the nurse about progress on the evening medications. I get one of them.
  • 3:20 a.m. Another medication.
  • 4:15 a.m. Vitals.
  • 5:25 a.m. I get stuck for another blood draw. Luckily, my nurse is passing by the room and persuades the phlebotomist in my room to perform an additional draw scheduled for 6:00 a.m., saving me another stick within the hour.
  • 7:00 a.m. More meds.

In addition to the familiar aspects, good and bad, there are some welcome changes.

The first difference I noticed after getting admitted last night was the menu. There is the same menu I ordered from at the beginning of the year, but stapled into it is a full page Health & Wellness menu. (The original menu is, I guess, for people who are hospitalized but unconcerned with health and wellness.)

For me, the highlights of this new page are whole wheat pancakes, whole wheat waffles, fruit toppings for both; hummus and veggies; black bean soup; black bean burger; chicken, turkey, or tofu wraps; grilled portabella mushroom; whole wheat pasta; veggie or tofu stir fry; whole wheat pizza; veggie quesadillas on whole wheat tortillas; black beans, brown rice, sweet potato fries.

I brought some supplemental food based on my experience last winter, but I'm not going to have to rely on it that much. Tonight I had the hummus and veggie appetizer, whole wheat pasta with marinara sauce and grilled chicken, and sweet potato fries. It was all good.

Today I also had several transportations. No long waits, no getting left alone in halls. What am I going to write about?

18 comments:

  1. It sounds like the hospital president took your suggestions seriously. Even more impressive that they implemented effective changes so quickly.

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  2. Joe, you continue to amaze me with your outlook and approach to all of this. I will be thinking of you next week at my regular platelet donation.

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  3. Joe, I care about you and wish you the best. Let me know if you need anything.

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  4. Joe, Sorry to hear you are having a set back. I hope it is merely temporary and this bad news is followed (posthaste!) by good news. We'll continue to hold you and your family in the light.

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  5. "(The original menu is, I guess, for people who are hospitalized but unconcerned with health and wellness.)"

    You should be writing for The Daily Show.

    Looking forward to seeing you, though I wish it could be in Champaign.

    Love,
    Karl

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  6. Joe

    I've been reading here regularly (lurking, not commenting), and talking to your parents, so neither the temporary setback nor your amazing spirit surprises me.

    I like "passtimes" for "pastimes", recalling the etymology - late 15c., passe tyme "recreation, diversion, amusement, sport," (www.etymonline.com/).

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  7. Joe,

    So sorry to hear about your current stay in Chicago. Let me know if you need anything, even if it's just for a visit. Clearly, we'd rather see you under more social circumstances. Take care and give our best to Jan.

    Love,
    Mindy

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  8. Mara has already said what I was going to say. Kudos to the administrator, and kudos to you for leaving the hospital better than you found it. (How many patients have managed something like that?!) Your assignment now is to inspire them to give real thought to accomplishing at night what they need to accomplish while improving the ability of patients to get a decent night's sleep...

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  9. Hi Joe,
    Thinking of you and Jan and sending lots of love.
    May the Force be with you!
    Love,
    Neil

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  10. The good news is we get to enjoy more of your writing.
    The bad news is you have more to write about.

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  11. Dear Joe, It seems your next task is to take on the hospital's night routine. It is crazy that people attempting to recover are not allowed a full night's sleep.
    Love, Jackie

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  12. Joe,
    You are amazing and taking on this next round with all the zest and energy and humor as the first round, keep it up!! Love Maggi and Eddie

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  13. Joe, sorry to hear you are back in Chicago. I promise to keep the neighborhood in order in C-U. Please let me know if you and Jan need help of any kind. Kevin Floyd

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  14. I was kidding when I said that you'd have to come up with something to keep your audience. Really.
    JNR

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  15. So sorry to hear you're back to "square one," Joe. But that's not quite right, is it? Your doctors now know a little more about what works in your case, even if it's rather what doesn't. Practice makes perfect, but here's hoping that one practice was enough!

    Julia G

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  16. I like that - practice makes perfect, and one practice was enough! So the first time around was just the dress rehearsal, but now this is the real performance - starring Dr. Godley and her team of magicians, Leuk (the parrot), IVY (the pole dancer), and Joe (as himself).

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  17. Man, you're a usability expert everywhere, Joe. Keep making recommendations -- maybe you can get a whirlpool in your room and dinner served on good china. :-)
    Miss you, Joe. Keep the postive attitude -- this is just another hurdle. You'll get past it. I have no doubt.

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  18. A couple people have offered help. For anyone who may not know already, there is a mechanism for facilitating this:
    https://www.lotsahelpinghands.com/c/637114/login/

    The site is a little slow, so be patient for a few seconds after each action for the site to respond.

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