Monday, April 25, 2011

End Of An Era

Had a great Easter with the family. Though I was too tired to go to services I kinda felt like I should have went... you know?
We had family over for an egg hunt with the kids. LOTS of eggs. Ugh- probably too many, but we were counting on 2 more kids to hunt. Oh well, the girls were happy- and little cousin Wesley was happy too.
It was nice to have everyone over, I think that's the most people I've had over at one time. ?
Today is the first day of my last week at work.
I've decided to go on Social Security Disability. There are a number of factors that led to the decision. Some were no-brainers but I do love my job. I've been here for just shy of 10 years. Longer than anywhere else. I get a little misty-eyed thinking about it. I hate that I HAVE to even make that decision. But I've gone a bit downhill (well, I have) for the last couple of months. I'm more tired than usual, I'm sick at work, I've lost a bit of humor, I'm just this side of worthless really. So I have to relent and call it. It's not fair to everyone else around me to pick up the slack. I've never liked being a load. I suspect that this will give the jerk/loudmouth/a-hole at work ample ammunition to badmouth me some more like he did when I was diagnosed: "I guess this gives her more reason to be lazy." he said. Or something like it. I think he was just jealous that HE couldn't be the one with any sort of excuse. He doesn't have one but he sucks anyway.
Ugh- No, that stuff doesn't roll of my back. It actually cuts pretty deep, or I wouldn't even mention it.
Anyway- Friday is my last day at work. I got into radio to be on a morning show. I got there after 4 years in. I thought that was a pretty good advancement. So now I have to give it up. it wasn't really fair to the station and the people working to have to sit on edge to know that at some point they would have to find a replacement and possibly be hated for it. If I up and died while still working, what's the protocol for finding my replacement? Do they bring someone in immediately? Do they wait X months? Do they leave it open forever? Eh- Now they can do what they NEED to do. I hate doing it, but bowing out is about the only respectable thing I can do. Dammit.

The end of an era.

I know what you're all thinking- But you'll have so much time for the girls, for your health, for whatever you WANT to do.
~ Of Course I Will. That doesn't mean I didn't want to work. I LIKE my job. It's as much part of who I am as my Navy time was, as much as being a mom, as much as bieng mascot in high school, as much as playing basketball, playing drums in the marching band, being in ballet, being in Girl Scouts, being in 4-H, growing up in Coolville.
Some people get jobs to make money and that's it. Good on them. I chose my career because I wanted to do something that I WANTED to do. I knew there wouldn't be any money in it, but I figured that if I was doing something I loved, I wouldn't be miserable.
So here I am.
I got what I wanted. And now- I have to give it up. And the fear of being forgotten is kicking my ass again.

I've also noticed that I can't get a friggin' 'funny' checkmark on any of my posts anymore... maybe because I'm just not funny. Or maybe it's because the last few months have sucked. Well, in comparison. I mean, not that things have been fantastic since May of '09, but my ability to reframe is being clouded a bit.
I will work on it. Because, dammit, I'm not going out like that.

Wednesday, April 20, 2011

Get On With It

I figure at this rate, I should be at my target weight in 2 months or so.
The incredible shrinking woman. Hey- I'm not bitching at all- I hate being fat and loathed the idea that people would remember me with a a pudgy face and just chunky.
But my stomach isn't shrinking. So I still look fat in the middle.
I got my iron infusion today. I wish it gave me crazy energy like it should, but it doesn't. I'm sure it keeps me from being totally lethargic though.
As for the vaccine- I don't know what's going on. Maybe the tumor isn't growing but it just looks like it because I've lost weight. Or maybe it's grown.
I can't eat much at this point- I'm nauseous all the time. I hurt and I'm tired.
I'm trying to figure all this out and it's only speculation.
The vaccine has GOT TO work. I've got nowhere else to go after this- except maybe a colostomy? Eh, whatever. It's been almost 5 months since I've had surgery... I'm starting to go into DTs.

Saturday, April 16, 2011

Did I Invent A New Word?

Cancerexic- Losing weight from cancer issues.

I've been looking for a word to describe my shrinking (but not toned in any way) self.

So I use the word with my tongue in my cheek... sort of. I think it needs it's own word. Hell, people use the term 'Manorexic,' 'Tanorexic' and so on.
My contribution to Webster's.

Wednesday, April 13, 2011

What Next?

I am getting anxious about going back to Dallas next month.
I'm afraid the vaccine won't work in time to make a difference. I may just be paranoid but my abdomen feels harder and I feel... weird. I feel cloudy and kinda out of it at times. And there are times when I should be wide awake but I can't keep my eyes open. I had guests over last night and I felt like a jerk because if I sat down for more than 3 minutes my eyes wanted to close and I was going cross-eyed when they were open. I wasn't sleepy.
I was at work and for a minute or two I closed my eyes and actually had a dream... or was it an hallucination? I've even caught myself reaching for something that someone "in the dream" was handing me. This in the middle of the day.

Has the cancer made it to my brain? Am I over-tired? Is it the drugs I'm on? Who the hell knows?

So, maybe an MRI is next on my list of medical procedures I need done? Haven't had one of those, so- check- I MUST HAVE IT.
I still feel fat. I don't really look it from the front, but the side view- ick. My stomach fat is gross and isn't going anywhere. Where's the compassionate doctor who does tummy tucks? Tummy tucks for cancer patients... I think I'll start my own walk.

I've met with the doctor since the last paragraph. Seemed like a split second to you, huh?
I told her about all my concerns and she said it is most likely the drugs and the fact that I'm "working a lot." I use the quotes because I'm hardly an asset at this point.
Moving on... My bloodwork is still good, the lump on my incision scar is grody and getting big and uncomfortable and all that but there's nothing really to do about it at this point.
Of course as soon as I got home I found another lump in my arm that shouldn't be there- gotta wait a while to talk about it. next week I guess. No MRI right now. The doc asked me if I wanted one- I said not right now.
I feel like I'm falling apart. Is it in my head? Because May, 2011 is the 2 year mark? That at one point THAT was my expiration date? Peritoneal Carcinomatosis prognosis from diagnosis= 2 years. And there it is. In my face.
All it takes is one vital organ to shut down.. at any time.

And I worry about Vera wearing bright orange rain boots that are 2 sizes too big for her out in public?

Pardon my French but,
Fuck Cancer.

Thursday, April 7, 2011


I was on the phone today with the Mercy Medical Airlift people about taking care of my next flight to Dallas.
I had to get a hold of the American Cancer Society for my ID number and such.
They asked me if I had any questions about my cancer or suggestions and so on. Well the last time I asked any questions about appendix cancer, they didn't have any answers so I didn't think they would have any new answers this time. NOT knocking on the ACS by any means really. BUT I did have a suggestion: Educate themselves about appendix cancer. There isn't even an option of appendix cancer on the ACS website. It's THAT thinking that got me in trouble in the first place. Appendix cancer is it's own cancer. Just like breast cancer or lung cancer and so on. You don't treat appendix cancer like colon cancer or you'll likely get nowhere. It's the mentality that it can be treated like colon cancer that kills appendix cancer patients. If I'd have had the right friggin' diagnosis, things would have been a LOT different. I think patients need to have the right information instead of just lumping it into a bigger category just because it's convenient.
I suggested that the ACS look into appendix cancer information and pass it on through their website.
Plus, I suggested they include more information about Lynch Syndrome.
So I've become an activist.

Hey-Hey, Ho-Ho
Appendix Cancer's Got To Go...

Monday, April 4, 2011


As in "No Word." Because I haven't had any scans.
The tumor in my abdomen has not gotten any bigger as far as the Doc can tell. BUT the hernia/tumor/scar tissue just below my sternum has gotten bigger. Not really worrisome but the fact that it might be tumor growing= not good.
Again though, this is the 8 week mark. Let the healing begin dammit. I've more than put in the waiting time, the pain, the anxiety and yadda, yadda, yadda. So let's get this show on the friggin' road.
Scans next month... 29 days.

Round 3

Today I get shot #3. Also, today is officially the 8 week mark. The doctors said that the shots take 8-12 weeks to start working. Of course, they said that it can take LONGER. Like 18 MONTHS- longer. Let's hope that the vaccine is closer to the 8 week mark for working.
I still don't feel anything "working." A lot of people... well everyone that knows what's going on asks the question "Can you feel anything different?"
My answer is "I don't think anything is growing, but I don't think it's shrinking at this point either."
With Lynch Syndrome- it's hard to tell what this vaccine will do for me. Maybe it will be totally ineffective or maybe (Pollyanna) it will be the big cure for regular cancer AND the secret key to Lynch Syndrome. Eh. I try not to be a pessimist, but I can't repeatedly get my hopes up only to have them dashed again and again. I mean, 15 rounds of chemo for colon cancer and I don't have colon cancer... 2 IPHP surgeries that I didn't need, nor did they have any effect on the cancer. 1 HIPEC surgery attempt that couldn't be completed. The whole experience has been one let-down after another. So it's weird to put all my hope into a little shot in the arm. I'm not getting any other treatment. It's scary.
So we'll see what my blood tests look like and what the docs say today.

I got into Dallas at 9:30 Saturday night- meeting up with my friend Karen- she flew in from Missouri to meet me for my shot and for well, just hanging out for a couple of days. My friend, Jason and his wife (Who I occasionally stay with when I come to Dallas) held a get-together for Fallon Navy people at their house yesterday. I had a great time. I saw a couple that I was stationed with- they got married in Fallon and are still together. My friend Danny and his wife, Dayla were there. And I invited a Navy friend from Corpus Christi who lives in Tyler, TX. I finally got to meet her kids. :)
I guess some other Fallon-ites were a upset cuz they thought it was a reunion that we didn't tell everybody about. So I guess when I come out in June or July we'll do a bigger reunion. I hope airfare comes down.
Well, I must get ready for the appointment- breakfast at IHOP.