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Short bus to Crazy Town

usakat's picture
usakat
Posts: 625
Joined: Jul 2006

Hello All.

Tomorrow (Thursday, 7/13) I have a bi-lateral breast MRI and possible biopsy and I can't help but be nervous. I'm sure you wonder why I write here - why not the pink site? Drum roll please...It's been five weeks since I had a very nicely done right hemicolectomy and the ***** (meet my unfashionable colon cancer) and I will share the newest trend in colon cancer cocktails next week, XELOX (Xeloda and Oxaliplatin).

Since my colon cancer diagnosis I've maintained a positive and optimistic attitude and outlook, which was easy due to my easy surgical recovery, but the past week my mind has been spinning and I'm starting to feel restless. I'm feeling apprehensive and scared. I'm only 42.

There is so much...ARRRGGGGGHHHHH!!!!!! Sorry. I just need to sink to the bottom of a deep pool and scream, and hopefully when I rise to the surface my mind will clear.

My grandmother on my dad's side was diagnosed with colon cancer at age 49 and died at 55 after it had spread undetected throughout her body. My grandmother on my mom's side died of bilateral breast cancer when she was 46. My mom is also a fighter. She beat colon cancer diagnosed in 1990 when she was 52, and again confronted colon cancer in 2001. After treatment for the colon cancer she was diagnosed with lung cancer. In 2004 she was diagnosed with stage IV cancer of the mediastinum and doctors were not very optimistic, but in spite of statistics and doctor's uncertainty she has done very well. There have been several others in my family who had various cancers, mainly breast, colon, uterine, lung and brain. So we have some cancer...we do have beautiful blue eyes, are tall, smart and hard working. Give a little = get a little.

Mom's cancers have been in check with no growth since a brutal regimen of chemo and radiation which she finished in the summer of 2004. She worried 2004 would be her last year, but here we are two years later and my mother has enjoyed life. She is a world traveler and cancer has hardly slowed her down. Sadly however, mom's doctors just found a new spot on her lung via PET and CT scans. It's possible that my mom and I will be living with chemo at the same time, mom for lung cancer and me for colon cancer. Mom meets with her oncologist next Monday and I start chemo on Wednesday. We are very close, but this however crosses the line. It's frustrating and ridiculous.

Okay I know what you're thinking. You're asking yourself how far has this nut fallen from the tree? I'm awaiting the results of genetic testing for HNPCC, the inherited form of colon cancer. While it would be great to be able to explain the many cancers in my family, I don't like what it could mean for my brothers and their kids. All will soon be revealed. Tick, tock, tick, tock, waiting, waiting, waiting...

So, back to what has me so tangled up - my MRI. I was symptomatic and had a colonoscopy on a Wednesday in May, the day I was told I had colon cancer. Two days later on Friday I had a previously scheduled routine mammogram where it was discovered that I have a lump on the left side and a collection of tiny spots on the right that were confirmed via ultrasound the same day. I mentioned that I was worried because of my colon cancer diagnosis two days earlier so doctors decided that I should take care of the colon cancer and then take care of the "probable breast cysts" later. It's now later and I'm starting to feel anxious.

I'm also anxious about starting chemo next week. Side effects and all. Truthfully, I'm a single woman who always wanted to get married and have kids, but I'm a slippery fish and just haven't let myself get caught by the right Mr. Right. I was having fun working, traveling the country and all of a sudden it seemed like fast forward to forty. You know how time flies. Anyway, kids after chemo may not work so even though I was riding the end of that wave (let's not talk about biological clocks here), it's most certainly over now. I also wonder about dating when the time is right and when I'm supposed to tell someone about having cancer. It's not like its contagious or anything, but I've learned already that people are kind of weirded out by colons. You know what I'm saying? People would rather talk about politics, religion and weight gain before talking about their colons. Really, how appealing is a girl who insists on a colonoscopy by the third date?

I've been tripped up on the whole mom-daughter cancer thing, the MRI and having to come to grips with the idea that I could end up being that crazy childless lady on the end of the block who hands out toothpicks for Halloween. And yes, I do like cats. And crap...I should know by now that a girl should never, never, never go to the hair salon when emotionally challenged. Now after a go around with a hormonal stylist who just had a baby I'm hair color challenged too. I can hardly look at myself. I catch myself in the mirror and it's like, ah - that's the sick girl with cancer.

Even though it feels like I accidentally took the short bus to Crazy Town, I realize that I have learned a lot since May and I have much to be thankful for, so I pray for my mom and desperately hold onto the knowledge that I will be fine. Yes, there is more fun in my future, this I'm sure.

I would be grateful for any comments about HNPCC, coping with gas (not petro), tips for locating clean public restrooms, chemo and perpetual bad hair days. Jokes and good humor are also nice :)

Best Regards,
Kat

spongebob's picture
spongebob
Posts: 2599
Joined: Apr 2003

Kat -

Welcome! Damn, girl, if you aren't a textbook HNPCC-er, I don't know what is (except maybe me - the nut that is me didn't fall too far from my mom's tree either... or my aunt's, or an uncle's... or a couple of cousins...)

Welcome to the SemiColons. You actually have an alter-ego here, I'm sure she'll introduce herself in due time - she has a big mouth. She may have been out dancing naked until the wee hours of the morning, so give her some time to wake up. As you may have gathered, we're MUCH more fun than the pink site (besides our numbers includ single guys - I hear that's a rarity there)

Sounds like you're getting great treatment and you have family to hep you though all this "stuff". My hat's off to your mom. You know, most people just shave their head as a sign of support/solidarity - few actually get themselves going on a chemo regime. THAT's dedication.

By the way, who says colon cancer is unfashionable? Granted, we don't have a pretty pink ribbon (not that that's bad), but we do have a very fashionable blue star!

Know you are among friends here and we're always available to you to vent, chat, scream, cry, laugh, or whatever happens to come out of your fingertips.

Keeping you and your mom in my prayers

- SpongeBob

pepperdog's picture
pepperdog
Posts: 96
Joined: Jun 2006

Kat, I love your name and I love the personality that comes through in your post. Know I will be thinking of you when you have the test......you have lots of living left to do and there IS that right someone out there......a guy would be lucky to find such a refreshing, smart gal as you!

lfondots63's picture
lfondots63
Posts: 822
Joined: Jan 2006

Hi Kat!!

Loved your post and the jokes. Sounds like you already have bad hair days. Maybe looking forward to loosing some of the new color during chemo??? LOL. I actually got my hair cut short so you don't notice the thinning. Everyone loves the new hair and hoping some is left after the next 3 treatments. Then I'm done. Oh happy day. Unfortunately a semi-colon marks all the restrooms they can go to on the way to work. "Been there, done that". We have WaWa's here (convienence stores) that are on every corner. Restrooms always clean. With your sense of humor you will be a god send to some of the patients at the clinic you go to for chemo. I try to brighten the room also during chemo treatments. Like Spongebob said your alter ego (KathiM) will probably post soon on here. Take care and keeps us posted on Mom and you. Hopefully you are having her look at some of our posts too. They help keep you going on bad days. HUGS that you had to join our group but glad you found us and yes we are much more fun then the pink site.

Lisa

kangatoo's picture
kangatoo
Posts: 2115
Joined: Feb 2004

Hi Kat and welcome to tha funnyfarm where life is beautifull all tha time. Well....maybe not all tha time but we do try do hang a joke or two to keep us all in a reasonable frame of mind. On the other hand obviously there are some times when serious issues come to the fore and then it is time for us to knuckle down and help out. Although I have not been tested for HNPCC I am convinced that genetics are a factor in my dx. My mum passed in 2000 with brain cancer and I have to admit that although that never made me paranoid that I too would get cancer it certainly was on my mind. Of course the rest is history as true enough I got dx'd in Aug. 2003 with cancer and joined the "semi-colons". It is understandable how you must feel with the upcoming breast biopsy and I don't think that your being full of anxiety should be downplayed...you have a lot on your plate gal. I would not advise sinking to tha bottom of tha pool tho....chlorine has it's effects too...lol!
Hang in there and remember that you have found friends now.
All tha best from oz, Ross n Jen
btw....I always sign off with Jen included for fear I might be mistaken for a "single guy"....he!he!

chynabear's picture
chynabear
Posts: 483
Joined: Jul 2005

Kat,

First of all, I have to give you a virtual hug for everything you have/are going through and especially for keeping a sense of humor about it; I have no doubt this will help you beat the beast in the end.

When I read your post I thought of two people in our "semi-colon family"... one has already responded (SpongeBob) and the other has yet to show (must be out dancing naked in the street somewhere).

I pray that your MRI and possible biopsy show nothing of any significance in your breast. On the chance that it is something to send you to the pink site just know that it is possible to survive. We have our very own naked dancing lady who is currently NED and has a wealth of information and support and belongs to both groups. It looks as you already have a great roll model to follow in your mom... no matter the outcome, live life to its fullest and always know that there is absoluetly no reason why you (or your mom for that matter) can't be part of the % that beat the beast.

You'll find a few motto's on this site.

(1) Odds are for Vegas and Expiritation dates are for dairy products. Nobody can predict when you will expire.

(2) You only have to fight the beast long enough for a cure to be found; I pray that day will come soon.

I find that most people are becoming more comfortable with talking about the big "C" and even the embarrasing colon cancer. I am sure that you will find that dating after cancer will become easier and easier as you go. It's funny, my husband and I don't usually discuss my "cancer" but he is usually the first to disclose it to our new friends or his coworkers. Once they have the awkward, "can I ask how you found out" question and find that I am able to discuss freely my condition they are still very comfortable around me.

I'm sorry that you had to join our group but I'm sure you will find that we are great listeners and have a wealth of information, advice, and shoulders to cry on.

Please keep us updated.

Tricia

terril
Posts: 297
Joined: Apr 2004

Hi Kat!!!
Welcome to one of the best places to receive support. I am one of those women who live at the end of the street with cats. But,I do not give out toothpicks for Halloween!!!!
Cancer sucks. Simply put. I hate this beast. Kat, there will be times you will get down. Feel free to come to this web site and express your thoughts. We all give each other support and encouragement. If you want to talk about chemo farts, I am an expert. Loud... scary... can clear a city block. Terri

Betsydoglover's picture
Betsydoglover
Posts: 1254
Joined: Jul 2005

Hi Kat -

You have a great attitude. I think you are not yet ready for "Crazy Town". I can't give specifics on most of this (my colon cancer is clearly not hereditary since I am the lucky first in the family), but if you would like to hear my experience with Xeloda & oxaliplatin (with Avastin added in), please email on this site and we can connect. I have been NED since 8/26/05 (after 2 treatments) and am still NED and not had any chemo since 11/28/05. So, there is hope.

I also had a breast cancer scare in Feb 2006 - turned out to be "just a cyst" - but I know what you are going thru.

Take care (and try not to go crazy)
Betsy

KathiM's picture
KathiM
Posts: 8077
Joined: Aug 2005

So, Kat, MUST be short for Kathy, Kathi, etc!!!
I'm the naked, dancing one!!!!
Rectal cancer 11/04, PET scan 1/05 lit up an 11-year-old lump in the breast...decided to tackle the rectal first....finished in a blaze of glory with a resection in May, 05.....
Sept 05....needle biopsy on lump...breast cancer...ladies, start your engines AGAIN...sigh...some of my hair had stayed...3 weeks after start of chemo...bye-bye!
BUT I'm dancin naked happy dances because 2 weeks ago I had my LAST rads....Yesterday my onc put it down in writing....NED for BOTH the rectal and the breast cancer....
If it DOES end up being the beast (something called the Lynch syndrome), just remember you are beating the beast already!!!!
AND you have all of us crazies on this site. Actually, I lurk in BOTH boards...THATS where I found out about SILVADENE for the burns...the Breast board!!!
Hey, look at it this way, too....you are getting all of the beast you are allowed in one lifetime ALL AT ONCE!!!!
I'm sure we will be dancing the happy dance TOGETHER....(BTW, I wore a STRING bikini in Palm Springs last week...showed off my 2 belly buttons and my gorgeous zipper on my belly!)
Hugs from a been there, done that (my mom had breast and endometrial cancer, her sister died from lung cancer, her dad died from colon cancer....no genetic tests needed...I got it figured that my daughters will start colonoscopies at 25!!!!! hehehehe-why should I have all the fun?????)
Hugs and welcome,
Kathi

usakat's picture
usakat
Posts: 625
Joined: Jul 2006

Hello new friends! The very cool SemiColons -

I am struggling to write...all of you have rendered me speechless. Enjoy it, it probably won't last. Your kindness is overwhelming and I cannot express how truly touched and thankful I am for each of your responses. I'm encouraged by your humor and positive attitudes, and while I'm sorry to meet this way, I appreciate the connection. Thank you all.

I can see that I've come to the right place - Healthy doses of good advice and good humor. SpongeBob, color me back to blond (oh please, oh please) but I didn't entirely understand your post until KathiM replied. All I can say is, I hope you'll find that two is more fun than one. I suppose like all of our test results, all shall soon be revealed. hehehehe BTW: Congratulations SpongeBob on your clean bill of health.

KathiM, oh naked dancing one (NDO), congratulations on also being NED. I can see we have a few things in common, together with Betsydoglover. Not that I would wish this on anyone, its nice to know I'm not alone.

Today I had my breast MRI to look at those new cysts and now the wait is on for the results. The hospital and cancer center where I'm being treated is located adjacent to a harbor and since I was a bit early for my appointment I drove down the coast to enjoy the view. I drove past a protected wetlands area and saw three white herons coming in for a landing on the water. They looked so perfect against the blue sky and green of the wetlands. It was so beautiful and I thought to myself that this is the kind of thing I'm supposed to slow down to appreciate.

I conjured up that view in my mind during the MRI to relax. This was the first MRI I've had and I didn't know what to expect. The test took almost fifteen minutes to complete and required absolute stillness. The position on the table was a little awkward and when I started getting uncomfortable and restless I wondered why they don't give you a little valium or something first, just to take the edge off, and then all of a sudden I'm singing in my head that old Rolling Stones song, "Mother's Little Helper." You remember that song, right? "She goes running for the shelter of her Mother's Little Helper...What a drag it is getting old." It's such an up-tempo number with that hook melody that I started getting unnerved during all that gonging, changing, ticking, turning that those machines do all while the Stones were reverberating through my head. When it started to feel really tight I thought about those pretty white herons so I could relax, and thankfully it worked. I find out the results next week. Waiting is a drag.

Thank you again for all your prayers and good wishes for both my mom and I. I believe they work. I will send my prayers and best wishes to each of you. Tricia gives good advice, which makes me think of something my mom said a couple of years ago, she said that she was living with cancer, not dying from it. Wise words to live by that I will never forget. See you all here and on the boards...

All my best,
KATie

kerry's picture
kerry
Posts: 1317
Joined: Jan 2003

Dear KATie,

Welcome, girlfriend... Sorry you have to be here, but it is a great support place to be and new friendships are made everyday.

We also have Colon Paloozas every 6 months and get together somewhere around the country. We are meeting in Halifax in October - stay tuned for information. They are lots of fun.

Also, check out web pages and you can read more detailed information about the folks here. I suggest you create a page of your own as well...it's fun.

Wishing you the best on your tests results.

Kerry

Moesimo's picture
Moesimo
Posts: 1080
Joined: Aug 2003

Welcome to our world.

You have had more that your share.

i had the genetic testing done and luckily it was negative.

I was 46 when diagnosed with stage 3 rectal cancer.

I am hoping for good news with your MRI.

Maureen

soozi
Posts: 6
Joined: Apr 2002

Hey Kat,

Crazy Town is the place. I was dianosed in 1993, that other century. I was 37 and had a 3year old daughter and 1 1/2 year old son. Stage 3. Didn't look good. Then they started looking around the family for cancer, after all... a woman and so young. Dad had it with mets to the liver. Of course it is everywhere in the family. We did indeed have chemo the same at first. It is definately interesting to compare chemo notes with your father. Short example follows: "Any sores in your mouth yet?" "Nope." "I have some." "Try ice all the way there and all the way home, it seems to be working for me." "Thanks punkin' (I'm 37 at the time:-)How are you getting to the bathroom?" "Quickly!!!!" You get the idea. Some was funny, some was sad. But I look back on it with lots of love.

Good Luck with all. Have lots of bathroom info. Went through 6 wks of radiation and a particularly explosive Paul Simon concert at the Paramont (oooooo small intimate theatre). Vaulted over railings to get to the necessary before my ostomy bag exploded. Guy next to me was pissed but Paul Simon didn't seem to mind. We were in the 7th row. He just smiled and kept on singing.

I guess I'll end with that. Any questions - I'll try and share what I know.

Soozi

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