Monday, June 24, 2013

Hot mess

Just to catch everybody up with the latest:

-I had a tumor blocking a duct in my liver, and the liver's waste ("bilirubin") wasn't draining. I was itchy as HELL, and turning yellow as a result.
-They placed a stent in my liver to open up the duct
-The stent is working, but only S-L-O-W-L-Y. It still hasn't fully opened up enough to drain everything.
-They wouldn't let me start chemo last Wednesday, and they won't, until all the bilirubin is gone.
-They decided to add another approach to the problem. In addition to the stent, I'm going to receive radiation on this tumor, to see if that will shrink it up enough to open the bile duct.
-Radiation starts this Wednesday and will take 10 days.

How am I doing? I'll be frank. I am VERY, VERY ITCHY, itchy in a way you cannot imagine, torturously so, and I'm also in constant PAIN. I think it's simply pain from the stent procedure, and also pain from having a foreign object in my liver. I have to take Vicodin all the time, or else I'm in utter misery. I feel worse when I'm laying down, so sleeping has been extra difficult. Also I wake up several times during the night to scratch myself for solid hours on end (truly, no exaggeration). I rake my nails across my skin as hard as I possibly can, to the point of bruising and bleeding, and I can't stop.

I need to get this problem cleared up soon because I need to get back on chemo. And also because I can't really keep living this way. As long as I'm on my Vicodin, I'm ok. Happy and pleasant to be around. A productive member of society. But once that starts wearing off, I'm a mess.

Hopefully radiation works, the stent gets yanked, the pain/itching goes away, and chemo starts up again soon.

I should add that my kids are having a fantastic summer so far. At night they've asked me, "Can we do today all over again tomorrow?" Their easy contentment is a stark contrast to my personal state of being, with how much effort it takes me just to feel normal. But it somehow makes everything feel all right, to know that somehow I'm managing this personal crisis in such a way that they aren't even noticing anything's amiss. In fact, they're having a damned good time.

7 comments:

  1. You're amazing, Shelly! Hang in there... I am so sorry for the itching and other awfulness, but the last paragraph speaks volumes as to your fortitude and grace... lots of love! Julie Buchwald

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  2. Yes, hang in there Shelly...that sounds pretty miserable but you're handling it like a champ as always. I hope all goes as planned so you can get back to doing chemo ASAP! I'll try to whip up some baked goodies for you and the kids this weekend, y'all need some treats I think :)

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  3. Geez, that sounds beyond awful! (Actually, it sounds like several swear words strung together, the complete opposite of amazeballs. But I won't write that.) I wish I could help you! Is there anything I could do? Like call your doctor and tell him that, you see, if you can get in there to put the stent in, then you can get in there to take the tumor out? I don't think I could keep my wits together being a tortuously itchy, yellow, exhausted, heap of pain. One big hug coming at you from Cincy. So glad the kids are having such a good time; you are right, it is a testament to your strength.

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  4. Holy shit. That sucks so bad. As if Shingles wasn't bad enough - WTF? It is amazing you can see the bright side of the vicodin and radiation and I hope it works fast and hard and you find some relief soon!!!!

    You and Neil have created a wonderful life for your children. Glad that brings you peace under all that yuck and ick...and itch..

    Sending more good vibes as always.

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  5. b.kleis@hotmail.comJune 25, 2013 at 3:09 PM

    HELLO DEAR SHELLY!!! WTF?!?! YES, I SAID IT EVEN AT MY
    "YOUNG AGE!!!". YOU ARE ABSOLUTELY AMAZING, BUT PLEASE GIVE YOURSELF PERMISSION TO SAY THOSE EXPLETIVES & FEEL THOSE FRUSTRATIONS!!! PLEASE DON'T
    TRY SO HARD TO BE STRONG FOR OTHERS!! I AM SENDING
    MY LOVE, MY STRENGTH, AND MORE LOVE!!!
    WOULD LOVE TO HAVE YOU,NEIL & LITTLE ONES HERE AT THE COTTAGE ON LAKE MICHIGAN!! LOVE YOU SO VERY,VERY MUCH!!!

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  6. Oh my Shelly, I'm so glad that you are still able to have such a fun time with your wonderful, sweet kiddos even while enduring that painful itching. I wish I could be there to do something for you!!! Until I get back to Seattle for a visit, take Colleen up on her offer of baked goods. Yum! :)

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  7. Shelly....I can't stand itching. I am a person who gets a bug bite and it inflates to 10 times a 'normal person' size. I am therefore beyond freaked out by what you are sharing about being itchy, but I am exponentially impressed by your resolve, drive, positive energy, ability to share...etc..etc...etc...you are a blessing, you are a gift...I love you, and seek comfort and joy for you and your family....love to you...

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