More chemo tomorrow.

The crap news I got last week was from the 'new' oncologist (Dr. Rose) and I guess it's right on. So with my Dr appointment yesterday I didn't get some good news to the contrary. Still peritoneal carcinomatosis- typical survival of 2 years- one of which I've already used. The delay in diagnosis being that there are 2 types of this cancer and they can't be distinguished under a microscope. One is slow growing, can be fought back and 'lived with' for years. The other, aggressive, hard to treat and kills you without blinking. That's the one I have. They could only diagnose it as such because they've actually LOOKED in my abdomen on 3 different occasions and it's worse- even with chemo (IV and IP). Rare, rare, rare. Lucky me.

I talked to my regular oncologist and she's putting me on FOLFIRI with Avastin and possibly AMG706 if I can get in on the clinical study being done at Johns Hopkins. She said she'd contact them to see if it's possible to do here or if she needs to send me- I'll go there for the treatment.

In the meantime, I will invest in the Essiac tea people have talked about and monitor my pH levels and TRY to eat better and drink LOTS more water.

I'm still waiting on the test results from the Kras tests... to find out if there is a mutation or not so it can possibly be treated with other drugs.

I am desperately trying to find my sense of humor, my positivity and strength to not only get through this, but to beat this. I have not yet convinced myself that I CAN win. The only thought in my head besides the occasional one liner is that "You've got one year to do all the things you wanted to do. Get to it."
I can't help but WANT to whine and say "Why me?" Haven't I DONE the work already? Haven't I paid my dues? Why do I have to do this again just to live?

Plus, I can't help but think that I'm going to do 6 months of chemo for 6 months of life after that.

I don't know how to get out of this funk now. Not when it feels like I'm stuck inside an hourglass while the sand is pouring all over me. The second I 'forget' about my situation- I get yanked back to reality. I can't escape into fun times with my girls because my thought is "Enjoy this while you can, you're gonna die in a year."
How do you NOT get sucked into that black hole? And if you DO get sucked into it, how do you get out when reality isn't just smacking you in the face- it's busting you in the mouth and taking kidney shots?

ONE YEAR DOWN

I don't know that I will be able to convey my thoughts very well with this post today. For starters, I went to the new oncologist yesterday. This is what I got from the appointment: I have a type of cancer that is fast-growing. The IV chemo didn't do any good and evidently the IPHP chemo isn't even recommended for this type of cancer. So, did I go through 2 effin' surgeries for nothing? What I'm dealing with is peritoneal carcinomatosis. Yeah. Look that up. A terminal condition. It's not anywhere near good. Typical survival time is 2 years after diagnosis. Here I was whining about only having 4 years. Little did I know... But again, I hear the echo "You're not the typical case." Whatever.
Basically the cancer gets on your bowels and liver and shuts it all down or blocks your intestines... That's how it kills you. And it can happen at ANY time.

So what's in store for me now? A CT scan ASAP and FOLFIRI chemo for however long is determined, then more CT scans, then clinical trials. I'm so beyond pissed right now I can't even see straight. At least give me a fighting chance.

The Relay

Well, I will start by saying that Sorelle Di Lotta won first place for new small team fundraising. We made $2231.57. Now I gotta triple that for next year. it didn't start out well, setting up alone wasn't fun and I had no idea who would actually show up to walk and I had no idea what to do as team captain. My sister only added to the stress at first because she was edgy because she didn't know what was going on. But neither did I. The 'slumber party' part of it didn't really take, but all in all it went well. We sold a buttload of raffle tickets and I even got up to do karaoke at 4am. 'I will survive' and 'Ice Ice Baby.' Glad I got to treat everyone to my vocal 'talents.'



It was a lot of work, and a lot of fun.

it was nice to be next to people I know. Bridget's Brigade was right next to us. I work with Bridget's dad and really dig her mom. If you don't know Bridget's story you can read it here. (the article is more than a year old) When I have crap days- I think of her. And if she can beat the bad days and still be a regular 3 year old- I don't have anything to complain about.
We're planning next year to let the older girls spend the night. (Bridget and Iris are a week apart) That will be fun. Next year I'll know what I'm doing. Plus, I'll have a whole year to cause some trouble.

On another note- I was watching "Celebrity Apprentice" and Wow, Sharon Osborne just said something epic. "I thought I could start a charity and have it be like Elton John's, but nobody cares about colon cancer cause it's up your ass and it's not sexy." Too true, it seems. Not to take away from any other causes but no- it's not sexy. And don't even think of creating "Appendix Cancer Awareness" because the typical response is "I didn't know you could get cancer there... can't they just take it out?"
Why, yes, they can, but you can still get cancer there and it can still spread to other organs and kill you. Look at the damn scar on my belly that has been accessed 3 times to work on my insides and it will probably be used more to save my life as much as possible. ugh. aggravating. So a good weekend, but cancer still pisses me off.

I did meet a couple more cancer survivors- I didn't get to speak to as many as I wanted but time seemed to be something I didn't have much of- even though I didn't sleep a wink. Now I can rest a bit and concentrate on what's in store for me. Doc's appointments this week with a new Oncologist and then with the genetics counselor. My mother is the one that should be going to this appointment but she may not even make it there. grrr. At least by the end of this week I will have a game plan.

Tomorrow

May 14th, 2010. Well, tomorrow I will officially have known about my cancer for one year. I dunno whether to rejoice at being here another year or be sad that it's 'one down, only a few to go.' Of course I'm supposed to be happy that we're at least treating it and we know it's there- and I am. But there's that voice that says, "You've got less than 4 years to go... better get to that bucket list."

SHUT UP LITTLE VOICE!!!

And of course tomorrow is the Relay for Life. I think it will be quite a roller coaster of emotions. blah! I hate crying.
Well, plan to see pics from the whole thing. And I'll probably be in a few. from my profile pic, I look maybe even average build... hate to shatter any ideas you had, but I'm chubby. I WAS on my way to slimming down after pregnancy a year ago- but- well, you know. I gained 30lbs on chemo and haven't dropped it yet. Only 5lbs down. You've been warned.
We're doing a 'Slumber Party' for the theme- should be interesting and lots of fun. I'll try to update from the event- but it may be hard to do with all the hub-bub.

Back to work Monday

I can't say I got a lot done this last week- but relatively speaking, I got more done than the weeks before. Relay team's t-shirts were the bulk of the work. But those are in the works. Yay!!

On the cancer front: I will be seeing Dr Rose in Columbus instead of Dr Saab because they say that he would be more appropriate to treat me. Okay, as long as I get a kick-ass Doc that will listen and do some serious work on not only keeping me alive, but beating the shit outta cancer.
I've done some brain storming... and I am NO doctor. Hell, I've only got an associates degree... from a community college... and it took me 4 years to get that. But (and stick with me) I had blood tests to look at markers for colon cancer and ovarian cancer before my tumor was removed almost one year ago. Those tests went something like this: On the test for colon cancer markers, the average reading would be 1-5. My nu.mber was 3. Totally within range and would not suggest that I had colon cancer even when there was a softball sized tumor hanging out in my guts. But for the ovarian cancer markers, the average reading would be 1-I think 32. My number was 82. But as of even now- I'm told my ovaries are normal.
Signet Ring Cell Adenocarcinoma can be produced by the appendix, colon or ovaries (maybe more organs, but sticking to the topic). I did 6 months of FOLFOX chemo one of 2 for colon cancer, but there was still no real consensus that this IS colon cancer- still suggestions of appendix cancer.. whatever. So the chemo for colon cancer did not work. But would chemo for OVARIAN cancer work? Because, to me, we should be treating the kind of cancer- not necessarily WHERE it came from. There should be a chemo for "signet ring cell adenocarcinoma" or whatever the strain is. It just kinda makes sense to me. But since I don't know of a specific chemo cocktail for signet ring cell adeno- I'd think trying ANYTHING related to it would be better than nothing.
It's just a thought, but I can't help but think it makes a ton of sense.

This week a few things hit me in the face- Tomorrow is the first Mother's Day since my diagnosis because LAST Mother's Day I was in limbo, between- "I don't feel so good?" and "Oh, I have cancer." I spent the day nauseous- unable to eat anything, watching my friend finish a 5k that I asked her to run with me, but I couldn't because I felt like crap.
I go back to work on Monday. I'm hoping it goes smoothly and that work will 'feel' better than it did last go 'round.
Then Relay for Life on Friday. Ironically enough... One year ago to that day, I was officially diagnosed with cancer. Staging came later. I was originally told I was "Probably Stage 2 or 3." hmmm. If only.

Well, onward and upward. Can't wait to see what Dr Rose has in store for me. Seriously. As MUCH as I LOATHE chemo and surgeries and hospital stays and needle sticks... I hate cancer more.

Onward

During the Garage Sale I got to meet a few of my neighbors... one has a son-in-law who has, wait for it...... Appendix Cancer. Hmmm. I guess he was and is stage 4 but in remission. has been for 7 years I think. He attributes it to an herbal tea (4 herb tea @ herbal healer.com) and he monitors his pH levels every day still- taking drops to regulate his system to not be acidic or something like that. (pH strips and drops @ luckyvitamins.com)I am willing to do both of those every day if it saves my life. I'd heard of teas and such- but I hadn't heard anything about pH levels... but evidently an acidic system is bad and taking some drops balances it. Whatever- as long as it keeps me around longer.
Of course I haven't gotten around to it yet and will be asking my new Oncologist about doing so before hand.

On THAT topic- I still haven't gotten an appointment with the new guy yet. Dr. Saab. He's got to have paperwork from Dr. Arnold (my surgeon) and Dr. Cawley (my local Oncologist- I'm not leaving her.. just in addition to) and still doesn't have all that he needs or they'd be calling me to schedule. I am not anxious about starting clinical trials but it's got to be done. So be it. Gotta lay the smack down tomorrow so I can get this stuff rolling. Been dragging my feet on doing it but I go back to work next Monday and I want to get my ducks in a row.

Still haven't received my disability pay... a little pissed about that. They won't return my calls. grrr. Got to get bitchy I guess.

AND I have to get the last minute stuff taken care of for Relay for Life. I like being in charge, but I don't like it at the same time. This year's theme is kinda hard to work with and I've got a lot of irons in the fire. It will be overwith soon enough.

After that- a Geneticist appointment with my Mom and sister. Then my sister's surgery.

But for tomorrow... lots of phone calls and laundry. Getting the house in order before going back to work.
Folding underwear= living life to the fullest.

Wow! Now I'm REALLY connected

I treated myself to a notebook computer this week and got it yesterday!!! It seems I've been spotted with purple throughout my life- it always 'just so happens' that I get stuck with purple things. My Lotus phone is purple... the only color they had when I renewed my contract. This notebook is purple and it was between this color and yellow I think. (eesh) A few years ago when I got married- I was NOT particular about the colors, it was just that the dress shop had a few bouquets that were silver and purple that went with my dress. "Okay" I said. I'm not picky.
My Fave color is green- but since Relay for Life stuff is purple, no biggie getting that color in stuff. I just don't wanna over-do it.

I know I will be blogging more now- I don't have to seclude myself to the basement to get online and when I go for whatever treatments are in store for me, I can come here and yakkity, yakkity. Lucky you. har har.

I got a little more energy this week and pulled off a decent Garage Sale. All $$ went to the Relay for Life. We made about $340. So it wasn't a bunch, we had a lot of stuff underpriced. Then you get the people that want to haggle over a doll being marked $.50 and they only want to pay $.25..... ARE YOU SERIOUS?!?!? Did you NOT see that this Garage Sale is for CHARITY? So sad really.

I can't even haggle in Mexico, where it seems to be an art form. Oh well.

The highlights of today... Iris set up her first Lemonade Stand. LOVE IT!! She made $8.50 and I told her I'd match that for her piggy bank. She's too cute.





Still getting ready for the Relay- gotta get shirts printed and stuff. But we've got sponsors now- YAY!!! This week I crack down! Stay tuned!