Friday, May 29, 2009

:(

I don't feel good. I mean, overall things are going great, I'm not sick, no infections/fevers, etc. (which is all really good), but I feel pretty icky. Today I just feel so weak and tired - like getting up out of bed to brush my teeth is a chore. But the worst part is the mucositis in my GI tract and stomach - it's a constant burning/aching sensation, and every time I eat or drink it hurts really badly. They have me on this stuff called Protonix as well as Maalox (so gross), and I'm sure it helps, but I think there's mucositis as well as heartburn/acid reflux going on in there simultaneously, so it's not really giving me much relief. And sometimes, stuff doesn't stay down, and it's VIOLENT. I feel like my body is turning inside out. All I want to do is sleep, which is a no-no, so I just sit up in bed at a 45 degree angle and lay here. I'll go do some laps later (I actually have a date with someone in 5C at 2pm to do laps), but I doubt I'll be bustin' out an hour of exercise like I have been prior to this. It's just hard to fill the time while you're uncomfortable, to try to take your mind off of it, because nothing really works. All of the nurses and my docs keep telling me how great I'm doing, and I am, this is nothing compared to the side effects some people experience. So it's a weird thing here - I'm happy that I'm doing this well, but I still feel crappy, sooooo......I feel like, almost guilty for complaining when I know it could be much worse. I try to stay super positive and upbeat on the blog - I think that typing it out this way helps me to try to actually think that way, but it's definitely not all daisies and sunshine over here. I think if I wrote down what I was actually feeling as it was happening I'd just have a huge pile of negativity and complaints, so it's easier to reflect on things and try to put them in a positive light. People have commented on that - how "positive" and upbeat I am - I really don't think I have a choice. What's my other option? Curling into the fetal position and feeling sorry for myself? Nuh uh. I have no other option than to wake up, try to make the best of the day, and try not to think too far ahead. It's hard for me because I'm a major "planner" and I like everything laid out in a perfect plan, but cancer doesn't work that way. It's one day at a time. Me no likey. I'm still working on that.

As far as the food goes, I still don't want to eat and everything tastes icky and hurts going down. I've got a LOT of eating to make up for once I'm out of here! I can see now why they kept bugging me to "Eat, eat!" because now I really don't want to.

I think the doctors are rounding - so I'm going to go. Just wanted to check-in and give a little update.

ETA: This song is totally stuck in my head!

9 comments:

  1. Sent you an email with some tummy ideas.
    xo
    J

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  2. HI Jess. So sorry you're so uncomfortable. It just ain't fair! But I agree that your attitude and outlook are absolutely incredible. You are a superstar -- don't ever forget that. Just concentrate on healing and positivity. And since you're a major planner, like me, why not start planning something spectacular, like the trip to Italy -- think about what locales and venues you'd like to visit. I think Jenna may be teaching English in Italy this coming year, and it would be fun to rendezvous with her at some point.

    Remember we all love you and are your greatest cheerleaders.

    Love, Cousin Peggy.

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  3. Hey Jess,

    it's good to keep things in perspective and that you know that you are doing well, given the circumstances, but it is also perfectly acceptable to bitch and be negative about the things that suck for you because it helps you get things out of your system ... and then you can get back to the great overall attitude that you have on this whole ordeal.

    Yeah, you should totally start planning your trip ... and you should plan out all the delicious meals that you will eat in your first week out of the hospital. Now, that's something to look forward to and it just might satisfy your "major planner"-persona.

    As always, sending lots of love and support,
    -Surrogate

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  4. David, Nelson and I have our fingers and toes crossed that this ickiness will pass quickly and that you will be back to enjoying food in no time!!!

    Love you!!!

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  5. Peggy is right. Think about that trip and all the great life and food experiences that lie ahead.
    I keep thinking too that you should look back on some of your old posts with regard to food. That crabcake sure looked good. That has to be a fond memory.
    You are a Superstar! I love how your sense of humor comes out even through all of the misery you are going through.
    Love You Lots
    Cousin Marsha

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  6. I'm sorry about the tummy issues... that mucositis sounds terrible... something you wouldn't want to wish on your worst enemy. Thinking about you all the time!

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  7. Jess said:
    "...They have me on this stuff called Protonix as well as Maalox (so gross), and I'm sure it helps..."

    Dr. Leo Spaceman (Spa-CHEE-men) recommends:

    Knowitol: Daily supplement taken every day by doctors and staff at Johns Hopkins.

    Narcissistal: Used to counteract excessive use or overdose of Knowitol.

    Paradoxicilin: For mood balancing when the doctors insist you're fine but you feel like the Russian Army has bivouacked in your lower G.I. tract.

    Blizzardrine: Intensive sinus therapy administered at Dairy Queen.

    Dexedream: Induces maximum R.E.M. cycles when taking short naps.

    Perplexidrine: Helps to reconcile nagging and seemingly unanswerable questions, e.g., just how big are those Hamsters in that Soul Kia commercial?

    Antibetabiocillizorbanol: I have no idea but it sure sounds comprehensive, eh?

    Pharmasuitable: Any acceptable place you can score these drugs.

    ReplyDelete

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