"Time heals the wounds that the world can't see..." - Todd Rundgren

Woah.

I'm back.
Sort of.

As you can see since I am typing this (and yes it's really me...) I made it through my rectal resection surgery on August 16th. Actually made it through with flying colors!! So yay! that. As you can also see I haven't been able to do an update because things got a little rough after that...

The start was beyond rocky since walking out the door that morning to go to the hospital was the scariest thing I have ever done. Only to find out after we arrived (at god-awful-7am o'clock...) that my surgery wasn't until later that afternoon, so me and the posse (Emma, Kevin, January, Jen, Jason and my Mom and Dad...) had to go BACK home and return again in a few hours. It was a double courage day.

And except for EXCRUCIATING (and I do mean EXCRUCIATING!!) lower back pain from a lower back spasm I got while they had me god-knows-how trussed up during surgery...and the weirdness of waking up in recovery all alone to full consciousness...with NO ONE there (I was yelling "hello?? hello? anyone???) from there on out it went pretty smoothly. the actual pain from the surgery was never more than akin to bad cramps...and a little ouchy when I tried to sit up or get out of bed.

I was a model patient (or at least tried to be...) and got up as SOON as I could and started walking, which I think greatly attributed to me getting out of there in just 4 days! So by that Friday I was home. (and thank goodness because YES hospital food is every bit as horrible as people have said...)

And word has it I was VASTLY entertaining on pain meds...supposedly I would just nod off while having a conversation, then wake up and look for an answer to the question I'd just asked, even though I'd fallen asleep and been out of it for an hour or so...very weird. But glad to provide a little entertainment to my beautiful friends who so patiently and beautifully stayed with me. And ask Anne sometime about the movie we watched 4 times, which I kept requesting which I STILL cannot remember the name to..(I know Sandra Bullock was in it and it had something to do with football..) it's a very entertaining story

So that Friday I was released I walked a mile in the hospital that day alone, I was feeling pretty good!! So good in fact I went home and went out that evening. Walked up to the Northside tavern and had a coke...I even went out that Saturday night to a street fair in Ludlow Ky to see a friend of mine play.

And then the fluids ran out!
Obviously they had been keeping me well hydrated in the hospital through the IV's...but once I got home, now that I am officially a temporary "Ostamate" (sounds like some weird Australian bird doesn't it?...)I starting dehydrating very quickly.
It wasn't that I wasn't drinking fluid (I was!! like gallons!!) it was that since they were bypassing my large colon, which is what absorbs all the liquid from what you eat and drink, water was passing through me like..well..water.
So weird juxtaposition...feeling great and healing from the surgery itself, but feeling like TOTAL crap because I was so dehydrated. And when I say total crap, I mean I hurt so bad my hair hurt...couldn't walk..couldn't sleep, my skin was hot. It was just plain awful and I was miserable.

So I just laid in bed, watching every movie known to mankind and read like 30 books, none of which registered because I felt so bad.

The highlight and ONLY physical action in a day was walking downstairs and getting something to drink and microwaving (if I could...) something to eat, with a lot of sitting down while I was doing it.

Well the situation got so bad I had to go back to the hospital a couple of times to get more IV fluids...so in between what I was eating and drinking, taking Lomotil to slow my digestion down and my body not responding it was a frustrating mix and crap shoot.

And not to even mention my illeostomy bag...really I can't talk about it because I hate it so much and it's so traumatic to change it I need a Valium just to think about it right now. Suffice to say, I hate the thing and will never be so happy in my life as when I get rid of it. Although I am grateful it's giving the area I was operated on a chance to heal but that is the ONLY good thing I have to say about it. well that...and the fact I don't smell...which was one of my major vanity concerns. Otherwise it burns, it's annoying, I have to empty it like 10 times a day and well I just hate it.

So the GOOD news is that there was NO cancer in my lymph nodes and my tumor had shrunk to .6 mm (which is about the size of a head of a pin...)So yay for positive thinking and energy!!

My other great hurdle was after the surgery results came back I needed to go back to the Oncologist and hear what was next in terms of follow up chemo. Another "I was pissed" situation because I was told several times that if the surgery was successful (which it was) that there was a chance I'd only have to do a few follow up months of chemo.

WRONG, NOPE. NADA. Fuck.

5 and a half more months...which since I was feeling so bad was NOT good news and the day I found out, being hooked up to IV's AGAIN I actually cried through two boxes of tissues because I was so upset at the news (although as January put it, if you're going to cry that much, much better to do it while you are getting IV fluids to replace the tears...so true)

So next step was to come to a decision of what kind of chemo and all the signs were pointing to the IV, get a port, have to go in every two weeks, lose your hair kind...which was NOT making me happy.

I had done hours of research reading clinical trials and comparing all the different kinds of chemo and the one he was originally thinking really only had about a 5% better response rate with TONS of cons I just did not want to deal with and I could not envision my self doing.

However when the DR. realized how much the Xeloda pill had shrunk the tumor pre surgery, he OK'd me to do just the pill alone for my follow up chemo.
Hallelujah!!! IT was the BEST NEWS EVER!!!! He wrote me a prescription for it on the spot, I start taking it October 18th and don't have to go back in for a follow up visit til November 1st. Chunk three here I come!

So now? Slowly getting better day by day...the dehydration issue seems to be getting better...I have about a strong 3 and half hour period at a time where I can be up and moving and doing things, and I even went to practice last night!
I'll be excited when I can drive again and can pick up something over 5 lbs (I miss you bass!!) However this is balanced out by still having periods of time where I can't get off the bed, but all in due time I guess.

So I am going to attempt playing Midpoint this weekend. We play Friday at 10:15 at the Inner Peace Holistic Center. Kevin in stepping in to play bass for me since I haven't been cleared to pick up heavy things yet. So it will be my own personal celebration of life and music. join us if you can I would love to see you! One of the hardest things is missing my social life.

I'm going to enjoy this small respite before chunk three comes barreling down.
It's good to be back. :-)