Post-Holiday

As you can tell- it's been over a week... actually almost 2 since my last post. Sorry about that.
You can imagine I've been nothing less than busy. I had ZERO Christmas shopping done, the house was a mess, (and is again) and I'm still trying to catch up on sleep. That will never actually happen. I just want to sleep for a week- if the week happened to be in a wormhole where I wouldn't actually LOSE a week of time.
I'm waiting on the word from Dallas whether they can make the vaccine from my cancer. It's a bit nervewracking because it's a 20% chance that they CAN'T. I know, I know- that means an 80% chance they CAN. But as you know, I seem to be pretty damn good at beating the odds. I mean, really- Lynch Syndrome, Appendix cancer... not just appendix cancer, but the RAREST of the appendix cancers. I'd play the lottery if I thought my luck would actually change at any point.
I only consider myself lucky that I FOUND the cancer before it killed me without knowing it.

Okay- moving on. I have to make the preperations for the Florida trip fast approaching. I am wondering if the extra couple of days we'll be spending will be worth it. Gotta rent a car, have food for the fridge and all that. Money that should be spent on bills, treatment or responsible things. It's not going to break us at the moment I guess. Ugh, what to do... We might just be worn out from the days before. I'm having second thoughts.
You know, there just isn't a protocol for being terminally ill. There should be an outline of what is acceptable and what isn't. Because Dammit, I feel like I can't do the right thing now- EVER. I am trying to balance being responsible with living in the moment because I don't know what is next. Hell- was this my last Christmas? A friend held bake sales and raised money to give my family a great Christmas. The girls got so many wonderful things! I was torn about accepting it because I worry so much that people will judge and hate me and I still worry that people think I'm faking because I still hear all the time "You don't LOOK sick." I mean, if you've been told that you don't have much time to live, what do you use fundraiser money for? Do you use it for fun things with your family? Are you supposed to put it in your kids' college account? Pay bills with it? buy something totally frivolous? Pay for your ton of perscriptions? Pay medical bills? My Mom got us a Wii for Christmas... are people going to judge me for having that in the house? Honestly- being a charity is stressful. I've cried over how to handle THAT just as much as I've cried about having cancer. If that gives you any idea. I can't imagine I'm the only one.
"Did you hear that Rachel has a new bankety-blank and a blankety blank and I heard that she's going to blankety blank?" I'm thankful for what people do to help - but it's also the source of much stress because I can just hear other people talking.
Maybe people aren't talking... maybe I'm just paranoid. Or maybe I'm right on. I'm effin' stressed just talking about it. But you know what? I think it needs addressed because you hear stories of people faking illnesses to get money and to hold fundraisers just so they can get a boob job or go on vacation to the Bahamas. Those stories make me want to punch those people in the throat. Not only are they making a mockery of genuinely SICK people, but they have made those sick people feel bad, awkward, guilty about accepting help- in whatever form. I don't know what else to call it- Charity. That's what it is. I've been told that it's not what it is, but I can't think of another word for it.
It's frustrating. That's another word for it I guess.

I totally didn't mean to jump on a soapbox, but that's where my mind went. Kinda sad that it's where it went when I was thinking happy thoughts about Christmas. We did have a good day. Iris was sick Christmas Eve. She spent the evening sleeping, fighting off something. She was better or "GREAT" as she said Christmas morning. I couldn't get enough of the smiles on the girls' faces. And there were unlimited hugs and "Thank yous." I hope I recorded enough to memory. I try not to think this may be my last, but I think about Marcie, who passed in September. I'm sure she didn't think 2009 would be her last Christmas.
Now what to do for the New Year. Will I feel guilty about not spending it with the girls if I decide to go out?
See what I mean?
It never ends.

It may come as a surprise to you, but I'm actually in a good mood right now. I just think too much. It's exhausting.

So maybe to relax, I will think about that 2 hour massage I got as a Christmas present from my husband. Ahhhh.

Part... uh, whatever.

I was discharged this morning- made it back to the hotel by 10am. Got a much needed shower and lazed about until my friend Jamie made it up from Austin. A 3.5 hour drive just to see little ol' me. So nice of him. Made me feel good that he would do that for me.
We talked- went to lunch with my Dad and Jamie's friend Glenn who rode up from Austin with him. Jamie and I haven't seen each other since September 1999. It was like no time had passed at all. Happy.
So this morning Dr. Kuhn seemed amazed at my recovery. He said he got plenty of specimin for the vaccine and research in Houston. Hey, there are little parts of me floating all over the country by now. But so far, so good. I've learned to not hold my breath though. I'm supposed to follow up in 2 weeks- but I think it may be more than that. $500 for a plane ticket just to follow up is a bit much. I may just have to schedule time to see him when I come back in February for the vaccine injection if all goes as planned. There is still a 20% chance they won't be able to make a vaccine. That would suck.
So, next on my horizon- getting home to the girls. <3
Then Christmas, Then New Year's, Then Disney!
Moving forward... Always.

Part 3

Had surgery yesterday. It was forever getting into the OR, I was wanting a huge bottle of water. Surgery was scheduled for 11:30 but I didn't even get in until after 2.
Wasn't the doctor- I guess the earlier surgery in the same OR went over.
It was a short surgery, I was 'awake' by 3. I know have a belly button again. it's kind of high but who cares? I really did it for Iris.
This recovery of course is way easier. No NG tube, no bowel prep or anything of the sort. I'm just sore on the belly and that will probably just be for a couple more days. I didn't even get staples- he used glue.
I have high hopes for all this stuff to work. I have to do some planning and saving for the shots though- $2000 each shot unless I get some grants to take the total pricetag down.
Well, that's all there is right now.
I will be talking with Dr. Kuhn about how it all went, if there's anything to tell, I'll let you know.

Hugs

Texas and Rachel Vs. Cancer Part 2.5. "Yes we Can, Sir"

Met with my next surgeon, Dr. Kuhn, today. He's the next in the long line of surgeons who want to do some cuttin' on me.
No hysterectomy- but a laprascopic "procurement" of cancer junk in my abdomen. I suess there's "plenty" to get. :( and :) at the same time.
I really like this guy- he was initially concerned that we had waited too long for him. Nice guy already. He did an ultrasound on my abdomen to look for more crud- or just make sure it was still there...... yep, still there. Damn.

I have a good feeling about him- but he's just getting the stuff- it's up to my cells to do the work.
BONUS though. Dr. Kuhn is taking out my port AND....... giving me a new bellybutton. LOL. I told him that my 4 year old cried about me not having one (and she did) so I just asked if he could swing a new one. So funny. what a Christmas present.
I go in tomorrow at 8am. Surgery at 11:30 and spend the night in hospital then discharge on Wednesday, a couple of days in Dallas- check back with the Doc on Friday, home Saturday.
Yee-Haw as those Texans say.
I'm in a very good mood. It's been a good day- and to round it off, I got to see my girls on Skype. I miss them terribly.

Wanna know how I feel?


Complete with hoards of people behind me, making me feel like I can do anything.

Texas Part Two- The Flight

Texas, Part Two
I’m sitting in a plane, bored outta my head and wondering why people don’t talk to each other more. Is it because no one cares anymore? Am I weird? Is everyone else stuck up? Am I stuck up because I’m not talking to anyone?
I think I annoyed the hell out of my Dad on the last flight because I was talking too much- but we were on the plane for almost 2 hours before we even took off! We missed our original flight because there was a ton of snow in Columbus and we ended up getting de-iced twice while waiting on the weather to break long enough to get out of there.
We ran to the next gate hoping to beat the other people from our late flight to the new, now boarding flight to Dallas. We landed at 2:10 and booked it to another terminal- they were getting ready to board for a 2:45 flight. So I got my exercise for the year. And I think I got shin splints in the process. So here I am, Aisle seat. Hungry. And the people across the aisle to my left are eating yummy looking salads with Italian dressing... I know it’s Italian because I can smell it. Ohhhh, how I miss salads. Can’t eat them anymore though. They wreck me- for DAYS. I’ll just leave it at that. I’d like to just lick a lettuce leaf with Italian dressing on it though.
To my right- a 20-something bodybuilder. He’s cute but probably thinks I’m just old and gross. He’s sleeping.. that’s why I can write about him.
And all the way to my right- a dude who is evidently not comfortable with flying because he “Held On” for the take off and the first 15 minutes of the flight.
All is calm now. It’s so quiet- and there’s even a baby in the row behind me. She must be sleeping. Wish I was but I’m too afraid to do something stupid in my sleep and embarrass myself. No thianks.
I was looking over the paperwork for the Vaccine Trial. Basically it says that it probably won’t work but we’re pioneering a trail for future cancer patients. Hey- I’m cool with that, but I want to live too. I don’t think that’s greedy. Of course I want others to benefit from this research- but I’d like to in the process. A friend of mine who evidently doesn’t read this blog because he didn’t have a clue what I was doing in Dallas wants me to go skydiving with him on one of my trips to Texas. I told him I didn’t think it would happen. He said the Rachel he knew would do it. The Rachel he knew was 23, cancer-free, child free and was able to take risks. A lot has changed in 12 years. I can’t say I’m cracked up about the idea of fighting cancer this long and however long I have to only to end up a wet blob on the ground form a skydiving accident. This isn’t a Tim McGraw song. I have kids to live for. Do you think I’d be flying back and forth from Texas, having surgery after surgery after surgery because I want to take crazy risks? I do those things to stay alive... for my kids.
Yep, I’d love to be footloose and fancy-free but I’m responsible for my girls and that responsibility includes staying alive to be a Mom.
I sound like an old fuddy-duddy, right? Well, I’m not going to go eat a blowfish either.
I just wanted to say blow.

So I am in row 21, seat D. Dad is in Row 26... right next to the toilet. Hopefully he gets a nap because i think I kept him up on the last flight.
We’re getting a car- no SUV this time unless I luck out again. Right.
Then to the Hotel. I think I’m going to just sleep. It will be rough for the next few days- Dad is an “Early to bed, Early to rise” kinda guy. I am a night owl and somehow a morning person at the same time. I like being up for breakfast- but I want to go back to bed right after. So what’s the term for that? Lazy... oh yeah.
My Doc appointment is at 3 tomorrow then I’ll find out what time the surgery is on Tuesday and if I’ll be there overnight and for how long.. yadda, yadda, yadda. Dad DID say he wants to go to BillyBob’s and we’ll probably see the grassy knoll. Isn’t that stuff you HAVE to do if you’re in Dallas for more than 2 days? If we’re going to have to be there anyway- might as well make the most of it. And maybe Dad can try some REAL Mexican food.
Well, the drink cart is coming my way and I’m STARVING!!!

More later, Folks.

On My Way

It's been hectic to say the least- the last week. Getting back into the groove at work- still haven't found it yet- and working on Christmas stuff. We just got the tree up on Wednesday.
Hm, Let me just do things in order:
There was a lot of hub bub about the CT scan and contrast and no contrast blah, blah, blah. It all boils down to the people scheduling the CT scan don't know what it entails... they just do the scheduling and don't bother to get any knowledge that MIGHT save patients time and energy. I digress- and I'm not even going to get into it.
Got my CT scan on Monday- Had the report sent to Dallas for the surgeon to look at. I overnighted the disc. Everything was there on Tuesday as far as I know but the doc had an emergency and was out of town until Thursday. My surgery date was tentatively the 14th- after meeting with the surgeon on the 13th but I wasn't going to hold my breath because when I do, nothing ever turns out like it should. Great track record.
Needless to say that since I couldn't make any concrete plans like securing a flight and help, that the dates turned out to be a go for sure on Thursday morning. Short notice, but at least it's getting done. I'm trying to be an optimist instead of irritated.
So, I will be leaving for Dallas once again this Sunday. My Dad is going with me this time because it is a surgery and he won't let me go by myself.
Surgery on Tuesday should be very minimal and require just and overnight stay if that... then they want me in town for a few days after that. I will be back in Ohio on Saturday the 18th.
After this I wait for the vaccine to be made. It should be about 4-6 weeks- then a return to Dallas for a dose. My Navy Budm Jason calls it 'Antivenom.' That's about right.
I hate jumping in and out of work but I think they understand and they aren't giving me any grief about it.
Right now I am jumping to a million things in order to get out of town without catastrophe following in my wake and staying here for me to come home to.
just a plain old post, trying to keep you in the know.
More later. I'll probably have something colorful to say on the flights to Dallas.

More later....

Hold the phone.....

Just got a call from Mary Crowley offices. The surgeon won't do a hysterectomy. WTF? NO ONE wants to take out my lady parts. He says he thinks he can get enough specimen from around where my bellybutton WOULD BE but he has to see CT scans first to know for sure. So I must hold off on the happy dance for now. Let's limbo. Whether I can do the vaccine hangs in the balance...

Texas and Rachel vs. Cancer Part One

It's the day after meeting with Dr. Nemunaitis about the clinical trials I'm elegible for. It looked like five a week ago, now it's more like two. That's okay. The cancer vaccine is one of the two so I am hopeful that it is the end all for treatments. Pipe dream, I know- but you just never know.
I got into Dallas Monday and had an easy time getting to my economy car which turne out to be a brand new, never driven, Chevy Tahoe. Everything IS bigger in Texas- hee hee. Really though- they ran out of economy cars with the guy in front of me. I had a choice of mini van or Tahoe. HELLOOOOOO! No mini van for me- I don't care that I AM a mom, I would fit in with the big 'ol trucks in Texas a little better driving something with some balls.
I got to my friend Jason's house- it was so nice and his wife was great. So nice of them to let me stay for a couple of days- it save me a couple of hundred dollars of hotel stuff. And it was nice to have someone to talk to.
Tuesday morning I met my other Navy buddy, Danny at the hospital. He was nice enough to go with me to the appointment for moral support and for me to have someone to talk to while I filled out the TON of paperwork. We got some Schlotzky's after- Oh how I missed that. Turkey and guacamole' sandwich. nom,nom.
I met with Dr. Nemunaitis, he was very nice. I was nervous that he'd be stuffy and pompous like Dr. Arnold. Not that being such makes you a bad doctor- I just have a VERY bad taste in my mouth from JERK doctors (Dr. Arnold has the personality of Squidward from Spongebob Squarepants- pointed out to me by a hospital associate). But Dr. N was not at all that. I got a good feeling from him. He was very nice and relateable and I wasn't uncomfortable. Hint for ANYONE... if you're intimidated by or uncomfortable around your doctor, you've got the wrong doctor. The vaccine looks like a go and there is another treatment that I could do with or after the vaccine (I think I'll wait until after) that is in infant stages, but sounds very promising.
I think they are interested in my case for more than one reason... appendix cancer is rare. I have the rarest of the appendix cancers. AND I have Lynch Syndrome. I'm a Diamond In The Rough. Dr. N said they had seen Signet Ring Cell Adenocarcinoma but not with Lynch and I don't think they have seen any Lynch cases. SCORE! For what it's worth.
The thing about the vaccine- the grant for the trial was for a certain time and that time has passed. BUT the FDA has approved the extention of the trial, no money though. So the vaccine will cost me a certain amount out of pocket. I'm okay with that, I just hope they can harvest a kidney while they're in there so I can sell it.... like anyone would want a nasty, cancer-covered kidney. Though I may be able to charge more... hmmm.
OH- yeah, the surgery. I may be back in Dallas as early as next week for a hysterectomy so they can do that AND get the cancer specimens they need to make the vaccine. 2 for the price of one. I wanted the damn hysterestomy for over a year now, and now I'm going to get it. A blessing in disguise that I didn't have it earlier. Did I say that already? Well, I mean it. Hooray for another surgery. Let's see how many we can fit into a 2 year timespan. My count is 7. Including my c-section in December of '08. I'm okay with it. Really. I'd like to get it done as soon as possible so I can heal as soon as possible for the Disney retreat.
As of right now, I have an appointment with Dr. N on the 15th, then surgery on the 16th- should be an easy recovery? I think. Then heal over the holidays, Disney in Jan, Vaccine in Feb and monthly after that and hopefully good to go by summer-ish. If at ALL possible, we may do it next week. I'm SO there.

I'm actually writing this on my 2hr+ flight from Dallas to Charlotte. I got a middle seat. :( But I figure I would cut back on explaining it a million times over when I get home. "Go read my blog..... oh, and tell a friend. " har har.
I have made the executive decision to 'commercialize' my blog to make some extra $$. Gonna need it, cuz flying to Texas from Ohio every month and all the other stuff won't be cheap. So I hope you all don't mind the ads that will be accompanying the page starting in a few days, gotta figure out how to do it.

On a different note: I 'spoke' with a friend/aquaintance (actually texted a bit) who informed me that a fellow cancer fighter lost her battle recently. She was only 3 years older than me and left behind 2 young sons. I had the honor of meeting her at the Relay for Life in May. I did not know her well, but from what I saw she was a very vibrant- beautiful person inside and out. She fought with colon cancer and was supposed to have been in remission this summer, but it came back full force. She passed away September 16th, 2010. R.I.P. Marcie. I fight for you too.
I think she was being treated at the James. Possibly by the one and only Dr. Arnold. I can't help but think if she'd have had a different doctor that things might have turned out differently. I do not know all the facts but this is story #3 of colo-rectal cancer treatments/diagnosis at OSU by Dr. Arnold being botched. The thing is- OSUMC overall is great. My sister had an AWESOME doctor/ONC. I WISHED I had some kind of GYN cancer instead so I could have dealt with him. So you can't let the bad apple ruin the whole barrel. The nursing staff at OSUMC was the best I've been around (and I've been around plenty), the GYN Oncologist was a DREAM!!! So to sum it up... if you have a GYN cancer- Dr. O'Malley at OSUMC=WONDERFUL!!! If you have colo-rectal cancer- get thee to Cleveland Clinic or somewhere other than OSUMC.
I will get off my soapbox in just a moment... it PAINS me to hear that someone who supposedly gets a clean bill of health can die within 6 months after that. It is inexcuseable! We're not talking about an elderly person with multiple other health problems. We're talking about a 37 year old woman with a whole life ahead of her. I could just scream. There are so many treatments out there and so much technology and yet she is no longer with us. Right now the only thing I can do is to keep this blog- and keep talking about it to whoever will listen. And even to those that won't... I'll just yell louder.

I hope that if this blog contains any wisdom, that you, the reader will pass it along when you hear any cancer story. The best weapon for the cancer patient is knowledge.

Arm them well.

Thankful

I go to Dallas on Monday. I'll be staying with a Navy buddy and his wife and then getting to my appointment on Tuesday. Then home on Wednesday. Hoping to meet up with a few more Navy Buds and other friends from Texas. Admittedly- I'm freaked out. There are 5 trials I'm elegible for- including the vaccine- but I have to have a prescheduled surgery. (And it has to be done in Dallas) Here's my brilliant idea.... since I still have cancer in my abdomen- and I know there is some on my ovaries that wasn't removed- I'll have a hysterectomy (that I wanted anyway) and they can get what they need then. They have to have 'fresh' cancer specimen to make the vaccine.
Voila!
Sometimes I even scare myself.
But really- I want the vaccine. I will do the chemo clinical trials if that's all I CAN do, but I'm not cracked up about doing it. I LOATHE chemo. Here's a little insight for those of you who've never had chemo: God forbid you EVER have to do it... But I understand why an older person, who's lived a full life, would choose not to do chemo. I didn't before. "Why wouldn't you fight?" I thought. There is no description for how awful chemotherapy is. I honestly tear up at the mere idea of chemo. And I think if I didn't have 2 little girls that need their Mommy, that I might not do the chemo either. See- I'm not as strong as you people think I am. But thanks anyway.
So- please cross your fingers, pray, wish, whatever it is you do- that I can part-take in the vaccine.

In the meantime, I will enjoy this Thanksgiving. I have a lot to be thankful for. Last night, as I was reading bedtime stories to little Vera, it hit me that I was enjoying reading to her. Not pushing to make a memory, not stressed that these moments are precious and I might not have many of them. I was genuinely happy, content. After books, she wanted me to sing (or 'ning' as she says) She snuggled with me, she laid her head on my chest and didn't squirm, didn't try to get away. She was still awake- I could feel her pretty little eyelashes brush my skin every time she blinked. I was happy. Though I can be happy- it was like a free happy- like the kind I had before diagnosis. I am thankful that Iris is growing into a compassionate little girl with a heart the size of an ocean.
I am thankful that I am still here. So much can go wrong. I'm lucky to have had 5 surgeries in the last year and a half and I'm still here. Still able to function, I'm not down and out.
I credit my family and friends for that. I have shit days- but I am reminded that I am loved by the wonderful things my friends and family do and say. I don't think I could ask for more than that. Hell, my friend Karen is flying in from Missouri to spend Thanksgiving with me. My friend Jenny is at the grocery store- right now, in the cold- doing a bake sale to raise money for Christmas presents for my family. That's just the tip of the iceberg, things that are going on right now. There's been such an outpouring of generousity and care (online friends/readers included) that I don't even know where to start except to say thanks to everyone as a whole. I mean it.
So, tomorrow's holiday means a lot to me.
Thank you all.

Now we wait.

I told you all that I am headed to Dallas, Texas for some experimental stuff at the Mary Crowley Cancer Center. Well- I've mentioned it a few times since August-ish I think. Just last week there was a news report on just what they're doing in Dallas and hopefully what I will be participating in if all goes well.
Here is the article link if you're interested.
Vaccine
I say if you are a cancer patient and looking for that extra glimmer- look them up.
Right now I am waiting on a phone call from the doctor's office so we can schedule an appointment to get started. Hoping to be in Dallas by this time next week.
I've been hoping, praying for a home run in this fight. This seems like the only one left.
The wait will be worth it if it works.

More later...

Getting Into It.

This is what happens when I go back to work- I actually work. Hmm, I must work on that.
Well, here's the dirty: I am in the process of trying to get a hold of Dr. Nemunaitis in Dallas, TX. He does cancer research and lots of experimental, uh, stuff. He's rather hard to get in touch with but I will continue to call. I talked to him once before my attempted HIPEC. He said if things didn't go as planned to get back to him- and so I am.
I am also looking into Cancer Treatment Centers of America. Chicago looks like it will be the best bet.
I am also going to talk to a herbalist and am trying to find someone that knows SOMETHING about acupuncture but around HERE it's a needle in a haystack.
I keep looking.
I will NOT be doing any avastin treatments for now because if I need to have even a minor surgery it may have to be delayed because of the blood-thinning that avastin does. I hate to put off any treatment but I have to thing "long" short-term... or whatever the hell you would call it.

On another note- My sister put me, Jason and the girls in for a retreat sponsored by Inheritance of Hope and it looks like the 4 of us will be going to Disney theme parks in Florida in January. From what I know, everything is paid for and taken care of. They will have people to assist with child care and they will have workshops for the girls (well, maybe just Iris) to learn to cope. Though the workshops will be more like games to them. I kinda feel like we shouldn't go because I got to go to New York with the girls in August. Is there a limit on things like this? I feel like I'm being greedy. {Shrug}
We could never afford to take the girls to Disney otherwise- and I would give an arm (or my bellybutton if I had one) to see Iris' face when we walk in anyway. So glad I bought another camera.

As far as ME... I'm doing okay. Glad to be back to work. I get to think about the stuff that shouldn't be thought about anyway- It's all about the entertainment industry on one of my stations. I get to talk about "Heidi and Spencer got married AGAIN!!!!" Nothing like a little escape from real troubles, right? I'm still tired but running out of excuses. I won't be running any time soon... just walking for now. I don't look forward to the inevitable jiggle that will come with a full gallop. blech.
The girls make every day great. I dropped them off at my mom's house to spend the night this past weekend and missed them the minute I walked in the empty house. They continue to be my strength. My reason for getting up in the morning, my reason for putting up with the headache that is navigating the cancer treatment labryinth. My 2 true loves.

Long Day

So I am back from Baltimore, the 5 hour drive sucks royally.
I met with Dr. Sardi first- nothing much to say except for it doesn't look great. Prognosis is worse after debulking surgery if they don't remove all the visible cancer. And they didn't. there was a lot of cancer there and it was in places they just couldn't get to or get it off. At least he took out what he could. Sucky, right? It gets better. Just wait.
Right after meeting with Dr. Sardi, I went right over to Dr. Ledakis. Get used to that name because he's a surgical oncologist... and my new favorite person. He's a huge guy- I can't wait to get a "My Oncologist can beat up your Oncologist" because it would actually be true.
Dr. Ledakis was part of my team when I had the HIPEC (that wasn't HIPEC). He took the biopsies of my cncer and tested it against different chemotherapies to see what would be effective. There are actually a couple of routes to try: The typical colon cancer treatments and a treatment against a KRAS factor... don't ask me what the hell that is, I just know that if you don't have a KRAS mutation- the cancer is vulnerable to another chemical.
Guess what? My cancer is resistant to all of them. And I have a KRAS mutation. All bad.
What does that mean? There is nothing that will definitively kick this bitch. So I begin trial and error. Ledakis said we can do Avastin treatments which may hold off the growth... maybe- hell, we don't know.
Prognosis. Few, very few make it to 5 years. But less than 5 years is better than 1.
So I am really going to have to buckle down and just do every urban legend cure out there. It's hard to transform your household into the cancer fighting kitchen. ugh.

I am going to get a hold of the doctor in Dallas doing experimental stuff with cancer vaccines and such. Plus, I am going to look into whatever clinical trials I can.
Ledakis said that if after everything- nothing is working- we may go to an old school colon cancer treatment that he repeated MANY times was very toxic. That's a next-to-last resort.
I did ask the question I put here a while back, about having signet ring cell adenocarcinoma and since that is commonly an ovarian cancer too- that maybe try an ovarian cancer regimen against it (even though mine is colon/appendix). I asked an asshole doc at OSUMC about it and he just repeadedly said "But you don't have ovarian cancer- you have colon cancer." DUH- I KNOW, YOU JERK!!! I tried to explain to him I knew that and was just wondering if that had ever been tried. He just looked at me and treated me like I was an idiot.
Dr. Ledakis 'got' what I was asking and he said "We can try whatever you want- nothing is crazy."
I like him already.

So, mostly a shit day. I wanted some good news- but I think I knew what was coming.
CT scans are the next step and a lot of calling around before starting the Avastin, if that is actually what I do.

On a beautiful note- Dr. Ledakis commented on my previous surgeries at OSUMC... saying basically that he didn't understand why any doctor would do that surgery without debulking first. And to do it twice and talk about a possible third one? Ridiculous. I think Dr. Sardi got in touch with Dr. Arnold and hopefully gave him an earful. Maybe Dr. Arnold will refrain from doing that surgery on others and start sending them to get the surgery they SHOULD have.
Kisses, Dr. Arnold. I really hope you read this and educate yourself.

I'm in decent spirits. I would rather live forever... but I'm not dying tomorrow. So yay I guess.
I can't die too soon- I still have to find my DD214 and get it on file at the courthouse for a military rites funeral.
Getting ready to die is a pain in the ass... I'd just rather not do it at all. Problem solved.

Thinking

I've been neglectful of my blog. Honestly I've been neglectful of a lot of things. I need to send out thank you cards- I have 2 here that simply need stamps and I've not done a thing with them.
I think I'm depressed. But I really don't want therapy. I don't want pills. I just want things to not be as they are. I want my family to quit worrying themselves sick about me. I just ton't want to think- which is probably one of the many reasons I sleep a LOT. I FEEL tired. Really. I take one of my many anti-nausea pills and I'm ready to hit the sack for an hour or five.
bah.
Okay- so it's been a somewhat eventful week... finding a costume for myself, Vera and the husband. Iris has wanted to be Ariel for weeks now. Check.
We did Zombie Night in town but my usually macabre' daughter wasn't digging it as much as I thought she would, so the stay was short. (And we've had an extra in bed with us for a few nights now.) I really like doing neat food for Halloween parties so I put a little effort into that for Iris' preschool party- some meringue ghosts, cookies and swamp juice... it was mostly the boys who took care of that. :)
Tomorrow is the costume party we go to every year- my favorite!! I am going as Lucille Ball, The husband is Rorschach (sp?) from the Watchmen and Vera is a garden gnome... SO cute! I'm doing mozzerella ball eyeballs. We'll see how that goes. Last year I did breadstick bones, they didn't come out so well. I figure I'm not baking anything with the mozz balls that I can't screw up THAT bad.
Tomorrow is also Iris' soccer finale'. Three games and trophies. She did pretty well for not having a clue at first. I guess ballet is next. I can't decide ballet or gymnastics... just something fun for her to do. You get psycho parents with either... you know the ones: "GET IN THERE AND EXCEL!!!! YOU MUST BE PERFECT!!!" ugh.. Had a couple of THOSE parents with one of the kids on Iris' soccer team. And the kid was stealing the ball from teammates to score a goal. Sad really. Let them be kids for goodness sakes.
I digress.
Tomorrow night is also the much awaited trick or treat. New town, new neighborhood. We'll see how it goes. I always have high hopes, but lately it's turned out like my Halloween food. :)

The girls lately have been great except for fighting Iris at bedtime. I notice Vera becoming more attached to me, calling for me more, asking for me more and wanting to just be around me more. It really does wonders for me. She runs to me with arms out, she just walks up to me randomly with hands up saying "Hug too" and she's been saying "Love you too" for a little more than a month or so. That's about the most I could ask for. I get to snuggle with Iris so I feel a closeness with her that I hadn't felt with Vera until lately. Family life is about the best it can be.
It's times like this that make me worry the most.

According to plan

Nothing ever goes as such.
Recovery is somewhat easy if you don't count the issues in the meantime.
Again, over the weekend, I had constant nausea and abdominal pains from food issues. I am only guessing here, but I think it is all attributed to the gallbladder surgery.
Ugh, who knows?
All I know is that I've called my Doctor the last 2 weekends in a row and I'm not calling her again on a weekend. And I'm NOT going to the damn ER like everyone wants me to do. They will give me a shot of phenergren and it will last a couple of hours and that will be it. Back to being nauseous. I've been exhausted and only really able to get to Iris' soccer game. Even then I was hurting and heaving.
Still nauseous days later- though I am closer to my goal weight. :)
I think my girls are getting used to the way things are and the way they'll probably be for a while. I do the less active things with them. Sitting on the floor playing people, painting, cooking, reading to them and so on. Nothing wrong with that. I just don't like being the 'lazy' mom. It's what I feel like.
So Mother Nature visited me this week for the first time in a year. The joke's on her though- I'll be back on chemo in a month knocking her back a few notches again. In your FACE lady!

Fall is my favorite season. Halloween, my favorite holiday. I am still dressing up for the yearly Halloween party, not as creative as I wanted to be with it, but dressing up none the less.
My house is slowly coming together. I actually put up TWO, yes, count them- TWO things on my walls yesterday. At this rate I should be in the running with the Louvre in a few Million years. I'm hoping to get some stuff printed and framed soon so this looks like a house that is lived in- instead of 'just moved in.'
And to actually get a hobby I'm going to start painting. haven't decided watercolors or oil yet, but I though I'd do little ones and sell them in May for a Relay For Life fundraiser. I will call them "Original Rachels." Who wouldn't want a piece of that? Maybe I'll even get an Etsy shop. I'll make millions!
Of course I can't decide what it is I'm going to paint. I'll let my brush do the work. hee hee.
I also need to start working out... have I said that before? Of course I have!!! But name one person around me that has the balls to say "Rachel, get off your ass and DO something!"

My Dad.

Although he doesn't use those words. I think it went more like "If you want to learn to ride my motorcycles, you need to start strengthening your legs to hold the bike up." Veeery diplomatic Daddy. :)
He's gonna get my treadmill to the basement and get me set up for weights with him. He knows I'll do it then because there are few things worse than disappointing my Dad. I just don't like doing it. Didn't like it when I was in high school, don't like it now. So Maybe it will work for me. Chemo and Cancer be damned, I'll get into shape sometime.
According to plan.

The Itchy and Scratchy Show

Well, it's been a week- guess what- i'm still pissed off about my situation. Surprise!
I won't go into it though. You all know how I feel.
Since last we saw the fearless cancer warrior- she was feeling sorry for herself.
New, just annoying developments since... I've developed hives from the antibiotics I was on for my incision infection. I broke out on Friday night and have been breaking out every 5-8 hours over the last 4 days. I went to the ER (didn't want to) because I was nauseous and throwing up any medicine I took, even on a sip of water.
Spent a couple of hours at the hospital, got an IV, some benadryl, zofran and steroids. That held me over long enough to eat but didn't keep away the hives. I haven't slept overnight since Thursday.
Last night I took a 3am trip to Wal-mart because it seemed like a better idea to get something done rather than to sit at home, in the dark and scratch myself silly. I was keeping my hands busy doing something other than think about my itchies. I made myself happy by getting Iron Man 2 (RDJ is my celeb crush) and got a CD.
A little 'Rachel' trip while I was shopping for grocery necessities.
I've broken out I don't know how many times and my Claritin and Benadryl and prednisone aren't doing much for me.
Just deal.
I actually DID get some sleep today but I don't want my days and nights mixed up... it seems to be heading that direction. Thank God for late night episodes of Jackass. Keeps me sane.
I'm gonna have to straighten them out before I head back to work. I'd LIKE to do it sooner than that.
If it's not one thing- it's another, ya know?
So that is the low-down on what's happening now. Nothing exciting, maybe not even noteworthy.

Real and Imaginary

It's 6:30am. I shouldn't be awake. I SHOULD be sleeping in my nice comfy bed, but instead I am on my couch, my cat on my lap, awake, thinking. They call it "Monkey Brain." I call it a pain in my ass. I'd much rather be sleeping and NOT thinking about cancer than unnecessarily awake extra hours TO think about it.
But here I am.
I think it's because my cat decided to sleep on me ALL NIGHT last night. Not that that in itself bothers me, but I think about the nursing home cats that hang out with old people who are about to kick it because the cat senses something and knows they're about to go. Unnerving.
So the cat is right here in my lap purring. I'm slightly creeped out.
I've been thinking more and more about the whole 'lymph node' involvement and what that could mean for me. Also the lack of complete debulking.
It's not fair. Yeah, I'm whining. But it's NOT fair. It's not fair that I've had THIS many surgeries and I STILL have life-threatening cancer. It's not fair that Dr. Arnold at OSUMC gets to spend his days carefree, without cancer and gets to spend oodles of money he makes from cancer patients he probably didn't help a bit. It's not fair that I have to worry all the time about my girls' futures... that they will end up being JUST LIKE those Disney princesses they love- with NO MOTHER.
Do you KNOW how hard it is to answer a 4 year old's questions about death when it's a real possibility? When she asks about the doctors and if they can 'fix' me? And how does someone 'get dead?' She cries at slow songs because she worries about me. How fair is that?

Unfortunately, the reality is that the only me they will know is the on fighting cancer. Surgeries, chemo, surgeries, chemo and so on. Tired, cranki, unable to keep up, getting others to do MY mothering responsibilities because I just can't.
It's bullshit.
I have decided to write a letter to Mr. Arnold, to be sent when I die. It will give him a real piece of my mind. Saying all the things I want to say to him- and I'll be enclosing a picture of my 2 girls for him to keep. So he'll know the children he left motherless. Because, YES, I DO blame him, and oncologists who only saw me as a number or just another body ripe for chemotherapy. None of my oncologists did any research for me. You'd THINK that an oncologist dealing with a rare cancer would be trying further an education, looking for new treatments or maybe a treatment they'd never head of before. Nope. They don't. And if YOU have cancer- don't think for a damn second that anyone is doing anything other than what is Standard Operating Procedure.
"Colon cancer? Wh-h-h-hell, THAT gets IV chemo. Hmmm, appendix cancer? That's, uh, in the colon, sorta, right? Eh, throw that in the colon cancer category, we don't get enough of those cases to worry THAT much about them. Oh, and I WON'T be looking any of this up for further information. Naaaahh. I'm sure that schooling I had YEARS ago gave me all the know-how I need to treat this 33 year old mother of 2 young children JUST like a 70-something with a totally unrelated cancer. Why not? She has good insurance."
Sons of bitches. All of them. Every one who DIDN'T bother for one damn second to look further than my medical record. Every one who didn't do a split second of research into REAL treatments. Every one who just went SOP and didn't bother to educate themselves on the HIPEC or even bother to GO ONLINE AND LOOK A DAMN THING UP. Every one who KNEW about the HIPEC but didn't bother to mention it to me. Every one who knew a diagnosis of PMP but didn't tell me.
Screw you all. I don't have to be nice.

So much for the 'Real' part. Was that real enough for ya?

I was trying to blog last night, but my phone wasn't having it for some reason. I wanted to tell you all about the coolest thing.
I went to Iris' preschool yesterday to pick her up because I'm feeling a bit better and am allowed to drive now (no pain meds). The teacher, Dawn, is wonderful and I almost always end up talking to her for a while every time I am there. She told me yesterday that they pray for me in school every day (it is a faith-based preschool) and that one of the girls there prays for her imaginary friend too. Her Imaginary Friend is Rachel Smith and she has pink hair. Dawn talked to her and asked her if I was her imaginary friend... I didn't hear her say 'yes' but Dawn said she did.
How cool is that? I'm an imaginary friend!
I just HAD to share that. Not too many people get to be an imaginary friend.

My staples come out tomorrow- a couple of them popped which is why there is a small issue with a section of it healing. ick.
At least I won't be dealing withh the damnedable staples anymore.

Well, I guess I'm off to bed to try for another 45 minutes of sleep- if I can get it.

little Update

Not a lot to update. I've only been online through my phone on Facebook.
It's nice to be home with the girls, though I don't like the fact that I have to send them off every day because I am still not up to par with energy enough to keep up with them. I'm still not supposed to be lifting Vera- her 24lbs is a bit over my 20lb lift limit. Grrr.
I should be getting my staples out on Wednesday- though I have a bit of an infection on a section of my incision. I'm not a dirty person- I've been washing it and TRYING to take care of it, but being fat has overruled good hygiene. So in addition to my slew of pills- I now add antibiotics.
I can't wait for actual recovery, and am anxious to get back to work. Believe it or not. I'll be back sooner than expected. Wonder if that will bother anyone?!?

No Whining

Sorry it's been a while. But I'm sure you understand.
I've been slowly recovering. Sleeping is especially hard. Our neighbor lady made some homemade chicken and noodles soup and I think Weds, Thurs, Fri- I'd eaten about 5 noodles each day and that was it. My appetite isn't back. I'm not excited for it to be, but I'd like it to be more than what it is now. Carnation Instant Breakfast is my friend for now. I haven't weighed myself to see what I've lost. I think I'd just be disappointed.

Well, if you didn't know by now- I did not get the chemo wash. From what I understand, Dr Sardi debulked a lot of the cancer- resected a few pieces of my small intestine, took out my gall bladder, fixed a hernia and repaired my stomach which was twisted and full of adhesions from the previous pointless chemo washes. I still got sliced and diced: Pubic bone to cleavage- SEXAY! AND- I don't have a bellybutton anymore. Not like I needed one I guess. But now my stomach is Ugly AND weird as hell. I guess I can win some bar bets now though. Woot!

I was discharged on Tuesday. I was nervous as hell to leave. Cold sweats and I think I had an anxiety attack. I'm not proud. Quite ashamed actually. Look, I've dealt with an ilias or HAD an ilias or gotten one or however the hell you put it in a sentence... Before. I was NOT ready to deal with one again. I will NEVER be ready for one of those again. I was with my sister-in-law, Inga, when I left. We got a hotel room across the street from Mercy. My Dad got there around 8. The evening was and is a blur to me. I just know that poor Inga had to play nurse-maid to me as I whined and cried. She was just lucky that in between that, I was sleeping. We left around 11am. Got home around 5pm and got to see my babies around 8.

I should get my 87 staples out this week. I will *sigh* resume chemotherapy in a few weeks since the cancer is now in most of the lymph nodes in my abdomen.
Can't win 'em all, right?

A book?

I think I will, one day, turn this into a book. Because my life is an open book, my life is a soap opera and my life is a Lifetime TV Drama. So Really-why not?

Today brought a new nurse. Cheerier at least but I was hesitant to ask for pain meds. She started asking me if I wanted them. I talked to her about the previous 24 hours and she seemed to get it and not be so anti-rachel. I've meen getting what I need- so for the time, I'm over the other crap because I have other crap to worry about. Not a couple of nosy, judgmental nurses.

I got up and walked at 7am. Was hurting at the time, but I needed to get out and walk. Did a big lap. The physical therapist showed at 9am and I walked again, did some exercises- they felt easy to do... even hurting a bit. I don't know how that works.
I took a shower. Yes, TOOK A SHOWER. ahhhhhhh. But of course, that's when Dr. Sardi came in to talk to me. He said he'd come back but I didn't see him again today. he must've been busy, because he's good to his word. After the shower, the physical therapist showed for more walking and more exercises. Just after that my sister in law called to say she was about 25 miles outside Baltimore. Dad ended up meeting her at the Hope Lodge and having her follow him back here. I THOUGHT I'd get a nap while they were gone.
Anything BUT. The occupational therapist showed up. She was nice but very talky. I didn't want to seem irritated so every time she got off track with stories, I'd just say, ooooh, what's next? I was exhausted! I really just wanted to sleep. By the time she was done with me, I just wanted to lay down... but the nurse tech came in to do vitals. about 10 minutes after she was done.. in come Dad and Inga. No sleep for me. Dad had to leave so he could get home while there was still daylight.. I think he turns into a princess, no, a Harley Rider- at Dusk.. whatever. Har, har.
Then I was Great Company because I was tired and sore. I think I slept a bunch after Inga (sister-in-law) got here. Luckily she was really wanting to read some Reader's Digests. She had plenty of time to do it. Right now we're having tea and sweets. Already walked twice and got "the question" anwsered with a yes. Things look like I'll leave Wednesday. Hooray!

Tonight- things are good. I'll leave it there. That full moon can be pretty strange.

Insult to Injury

I am having a bad day. Or night. Whatver.
I had been doing very well with walking and getting around. It took a lot of pain medication to get that done. I was in a LOT of pain after surgery, the little ball of abdominal pain meds and the pump weren't doing it for me. If I asked for more medication the first reaction was "Did you hit (or have you been hitting) your pain pump?" Umm-yes- that's why I am asking for more. It took 2 days a total bitch nurse and a very understanding Nurse Assistant to finally get my pain under control. I think there was some difficulty because I had been taking painkiller before I had the surgery and possibly gotten a tolerance to it. I was in pain around my stomach area.
That sucks- but it didn't take away from the fact that I was still hurting BAD after surgery NOW.
So we figured it out, so it was taken care of, I was getting up and walking and doing weights with the OT.
I was getting 2 doses of the something extra every 2 hours. Was doing great until late morning when my nurse said he was sorried about me becoming addicted to the pain meds and it was his job as a nurse to try to keep that from happening. Okay- I totally understand that and I respect it. I said "Contact my Dr's line for the weekend and let's see if we can get a different drug for the same purpose." I didn't have a problem with that. I thought we could get some pills since Dr.Sardi said I could do solids. The dosage was 4mg every 4 hours, but we had broken it down to 2 mg every 2 hours- my nurse wanted to try the 4 mg and go 4 hours. Personally- I didn't want to have a major high and a major low and wait, in pain for the 4 hours to be up. I thought maybe trying 1mg every 2 hours and wait to see what the Physician's Assistant said. In the meantime my sister had asked for a neti pot because I had been trying to blow my nose- but to do that hurts like hell after surgery (note the time-2pm) asked for it again an hour later. We were told that it would have to be perscribed by the PA, he hadn't called her yet. I had gotten the 1mg dose at 1pm and 3pm. My siser and mother left about 3:15.
5:00 rolls around- I would be getting another dose (1mg) I'm feeling especially sore. 5:20 my nurse comes in and says "Oh, I'll come right back with your dose." I say, "Okay- could you please bring the saline nose wash when you get a chance?".
6:20 comes around. My nurse says "Well the pharmacy is backed up so it will be a while." Okay- could you get the neti pot in the meantime please?" he said that he was the charge nurse all day and had forgotten about it. I totally understand if that is actually the case. But it didn't seem like the case. it seemed to me that he was ignoring me and NOT getting the things I asked for because of the "We think she's getting addicted- she doesn't need these drugs. We don't like her." I felt like he he hated me and wasn't going to help me and was just waiting till shift change at 7:30 to dump me off on someone else.
I finally got up the nerve to contact the PA on duty. they paged her and said that if she doesn't call me, to call them back and they would page agaiin.
I had waited to go to the bathroom because I was sore and had been going for walks and bathroom after the breakthrough drug because it hurt a LOT less to do it. At 6:40 I still hadn't gotten the 5:00 dose. I really had to go at this point, so I go the bathroom, I will give you one guess as to who shows up at the door with a syringe since I'm not out there to get it... Oh, he'll be right back with the dose when I'm done in the bathroom....I'm done right away- fifteen minutes later- he shows up with it. Gee thanks.
I called the answering service again and it paged the PA again. She called me, I just missed the call so I called her back- I told her that I was upset (at this point, I was in tears and you know- it hurts like hell to cry after abdominal surgery) and asked her first if my nurse had contacted her at all today. "No, no one has called about you."
WTH? He said at NOON that he would contact her! So I told her about the whole situation. But I didn't want her calling the nurses and addressing it because I don't need a whole floor of nurses HATING me. I knew if she took it up with my nurse NOW that he would just tell the next nurse that I was a dumb bitch and so on.
Well, she called them and talked to them- reassigned my dose to 1-2mg every 2-3 hours. I was talking to her (it was 6:55) when he came in and haded me saline nasal spray. "Have a good evening" he says.

I don't think I'll take any more pain medication through a syringe, I don't even know if I will do pills. I'll suck it up. My stomach hurts- but I'll stick with my pain pump that I can't tell is even doing anything.
When anyone asks- my pain level is 3-5, no higher even if it is MORE.
Oh and to prove I'm evidently disliked- my nurse from Friday night and Saturday night had an issue with the doseage on Friday night was was giving me doseage Saturday night without issue. Okay, that's fine, well at the end of her shift this morning, I asked her if she worked again tonight. She said, "No not until Monday." Guess who was sitting at the nurse's desk a couple of hours ago?
Okay-maybe she got called in.


So I had to go to the nurse's desk to ask for a dumb favor. I am feeling a cold sore coming on...
The LAST friggin' thing I need is a damned COLD SORE!!!
I have to be MORE of a pain their asses but I need some Valtrex.. like right now. It was 1:30am and they've gotta wake the PA to get her to perscribe it for me. Great- now everybody hates me. Everyone except the Nurse's Aid that did some braid cornrows in my hair for fun last night. She was genuinely nice and sweet. But I don't think she's heard the "Story about me."
So I have taken Valtrex and will try not to add more insult to injury. Waiting on this bad mamma-jamma of a cold sore to take over my face. Good times.

edit: The nurse also told the PA that he'd never mentioned me becoming dependent/addicted to the drug. It must have been a miscommunication.
and my overnight nurse was here as little as possible, not very talkitive and though I would've said "No" to any more breakthrough drugs if she'd offered- she didn't offer once. My PCA pump ran out at 6am- that means I was only getting the painkiller in my stomach- I was HURTING. I thought I'd see if she'd offer anything more than what I had. She asked me my pain level "Seven or eight" I said. She said "Oh, ok."

I must be Blacklisted on the 7th Floor. I am going to be a good girl until I leave because it just gets passed along about "The girl in room Blah, blah, blah." Being a drug-seeking, demanding, will tell on you to the PA- patient. and I don't need any more people NOT on my side.

Ohio University Medical Center had a crappy surgeon- well, let me rephrase that: OSU Medical Center- The James- Had a Surgeon who was good at surgery- but not good at sharing or learning information to send patients where they REALLY need to go. And had a Crap personality. But the Nursing Staff there was TOP NOTCH. I sit here and WISH, WISH, WISH, I was recovering on the 9th floor of Doan Hall.

Here- Dr Sardi is top notch- and I believe he has a good team with him. But the nursing staff is less than great. A few are wonderful- but I would really love to take a walk around the floor for exercise with my ass hanging out so the crap nurses can kiss it.

My mistake

Talked to Dr. Sardi again today (imagine that- a doctor that comes in on the weekend after a MAJOR surgery)
Anyway- here's the lowdown: He removed my gall bladder. He removed all the cancer that he could. That means he didn't remove everything. There is evidently cancer in a lot of the lymph nodes throughout my abdomen. There is a lot of it behind my liver, but so far my pancreas is okay.
He didn't do the chemo wash because he he doesn't think it does any good unless ALL the cancer is remove.
I misunderstood about my stomach- I guess my stomach had a lot of adhesions on the lining from the previous 2 IPHP surgeries. THANKS AGAIN Dr. Arnold.

As of right now- they are looking into what chemos will work on this cancer. That is basically the last resort.
I'll hold on to the little piece of good news that there is no colostomy bag. Yay

On the other side of it.

Well folks- I see my husband did some updates during the surgery. He didn't really give the entire story.
Good News- he removed a lot of cancer, not a bunch was among my intestines- so no colostomy bag. From what I could comprehend- my stomach was a mess. The lining was all cancerousTurned onto itself and Dr. Sardi says he was suprised I could eat.
However, he couldn't remove all the cancer and did not do the wash because it is in my lymph nodes around my liver...

The only way to go from here is to find out if this cancer responds to a new chemotherapy and get to it.

I've been up to walk already. Dealt with an unfriendly nurse- cried from the pain of docs pulling off dressing. I have 87 staples from my pelvis to above my sternum. It's a real beauty.

I am at a standstill. I was really hoping that this would be the last of it. Onward I go. Damnit

On the other side.

I'm done with the damnedable bowel prep. I should NOT have had that crabcake earlier today, but I'm IN BALTIMORE- Hello!
It doesn't matter now. I can't have any thing to eat or drink now.
I called my mother-in-law so I could talk to my girls- Vera was already asleep. Iris was still up. "Are you in the hospital?" -"yes"- "Can I talk to Dr. Sardi?" -"I'm sure he's in bed."- "Oh."
She is really wanting to talk to him. He will probably talk to her when she gets here. I hope so.
THE hardest thing about this whole deal is having to leave my girls. I don't think there is anything I hate more than saying goodbye to them.
I am anxious to be on the other side of this. Pronto.
I hope God, Dr. Sardi and his team can work wonders and are at the top of their game.
So until next time, my friends, take care. Updates at Caring Bridge if you want them. I just want to hold my babies as soon as possible.

I love you Iris and Vera- you are my life. I do all this for you both.
Kisses and Sqeezes,
Mommy

I'm here...

Just waiting I guess...
I don't think I'll be sleeping easy tonight. I feel fat as hell, I am waiting to shave my legs tomorrow- get all gussied up just so they can look at my worst feature... my fat belly and my cancerous insides. I'd much prefer they would have a gander at my boobs,legs or eyes (the body parts I actually get compliments on) I wanna see just how nice Dr. Sardi is--- if he gives me a little tuck while I'm out. It's only humane to give a fat girl a little help in the flat stomach department when you're already gonna be slicing and dicing that area anyway.

Tomorrow I check in at 9am to get poked and prodded- WHILE I'M AWAKE- and answer a million questions I think. Just pre-op fun..Please don't weigh me, please don't weigh me, please don't weigh me....
We brought "Yahtzee", "Pass the Pig" and a puzzle. that won't be enough- so I will have my handy-dandy.... Notebook! (Thanks Blue!) I guess I'll be playing the hell outta some online games.
The Hope Lodge is nice... but I'm glad I'll only be here for one night and won't be here for the checkout. THAT would require cleaning and I don't think I'll be down for that.
So.... Lucky YOU! You will get One More update from me tomorrow night before 'Go Time' once again. Then it's off to the Caring Bridge site for you when you want updates. My sister AND husband have the info... but nowhere near the amount of gleaming, fluffy charisma that I've got. har har. I kid. I appreciate them doing it for me while I can't.
Off to "LaLa Land for me"... probably in a couple of hours.

Sleepless in Belpre

Only less sappy I think, than the Meg Ryan/Tom Hanks movie...
naturally I haven't had a decent night's sleep since diagnosis- and maybe even before. I DID have a 5 month old baby and a 2-1/2 year old- so my sleep was kinda like a bad pizza: at least it was sleep of SOME sort.
Lately, I'd say the last few weeks, I just can not manage to get to sleep at night. Afternoon naps- no problem. I can fall asleep like I did in boot camp- anywhere! But at night...... I just can't. now I know what you're thinking, I've got my days and nights mixed up and if I didn't take a nap in the afternoon, I wouldn't have any poblem when it was actually bedtime. I've tried that too and it doesn't work. i'm kinda glad that THAT isn't the problem because I like my afternoon naps with Iris. Milk and cookies for the bribe then plenty of snuggling. I dig it, and I tell her that every day.
I know it's because of the stress. duh. I just can't figure out how to manage it correctly. I can't go to sleep at 9pm through the week so I can get the required 8 hours of sleep. I just don't go to bed at 9. I don't think I've done that since I was 11.
I guess it's not a big deal now since I've worked my last day for a while and won't be needing to get up at the buttcrack of before dawn. Now I can stay up that late- har har.

So I will add that to my whine list... along with my soreness and 'bloating'. Is it called bloating? You know? When your abdomen is swollen so much that you look pregnant again? Well, I look like I'm about 4-5 months pregnant, fantastic. Hopefully that crash diet I'll go on in 5 days will help me out a bit in that department. I am also sore and stiff in my midsection... is it in my head? The closer I get to surgery day, the worse I FEEL- PHYSICALLY. And I'm still nauseous and wah, wah, wah.
Should I revel in it? You know? Because I will miss it when I'm better? ha ha.
So at the times I do feel good, I'm soaking up all the normal I can get. Trying not to freak out about what lies ahead. Someone asked me if I was ready for the surgery. "Nope. Not at all." I thought for a second. So I compared it to giving birth; You look forward to the end result- but you've gotta go through some unpleasantries to get there. Unpleasantries, if I spelled it right, MAY be an understatement. Yes, I think it is. You get the idea though.
Soon this will all be a memory and I will need to focus on more important things- like what my Halloween costume will be and what candy to buy for trick-or-treat.

At the request of a few people I have set up a Caring Bridge website for surgery updates and post-op notes until I am coherent enough to tell you in my own words.

http://www.caringbridge.org/visit/rachelgreenwalt

It should be set up so that you can make comments and such without a huge production of giving your name, social security number, first born, father's Aunt's Maiden name and your college roommate's hometown or soemthing like that. Should be a fairly easy process if you want to leave a comment. My sister said she would update as much as I wanted her to. I told her that I have rabid readers and that she should be updating the page any time she is updated. I was told that a nurse will update the family every 2 hours or so, SO that is probably what you'll get.
Enjoy... I'll bet it's riveting! So riveting, in fact, that it will put me out...
Zing!

Be-logging

While planning for Labor Day weekend activities I started thinking about the people in my life who have faded away since diagnosis.
I found it funny, the sheer number of people who came out of the woodwork of my past, once word got around. I giggle about being the "Cancer Friend" and that some were simply being looky-loos.

It doesn't bother me. It DID. But I have gotten to the mindset that any publicity for cancer awareness is good publicity. WHO KNEW there was such thing as "Appendix Cancer?" Now more do than did 18 months ago, right? (can't they just take that out?)

I won't say I'm CRAZY about the idea of people who have REALLY done me wrong being able to just drop in and know about my situation so intimately (yep- even cancer patients have people they don't like... even before they have doctors they don't like.), but it comes with having a blog publicly accessible so others may read and actually GET something from it if they need to. I am honored that I could help educate anyone about what goes on in one person's mind when dealing with cancer. I hope someone can learn what NOT to do, what TO do when jumping through treatment hoops- what to do/what not to do when TALKING to someone with cancer and whatever else might help anyone in any position on the cancer spectrum... be it newly diagnosed, a long time survivor, a loved one or a friend that wants to reach out.
And if that means my blog is read by people I lack a fondness for in the process- so be it. I can think of a few people I don't think have a right to know about me and my situation but I am not SO bitter that I would delete a blog just so those select few couldn't read it.
I started this blog basically as a way to vent and to chronicle my experience for myself and possibly my daughters. Then it kinda turned into a reference point for those I didn't talk to on a regular basis... distant friends who wanted to stay in the loop. I started boring myself repeating the some story over and over again. I had little idea I would make friends from this. No idea that what I put out there would be found interesting at all by anyone who didn't know me personally. I keep running into people in my community who have somehow found my blog. Sometimes it's hard to believe the 2 worlds ever collide= the internet and the Mid-Ohio-Valley. It almost seems I'm better known for my blog than I am for being on the radio for the last 8 years. I get embarrassed... um, because I can cuss here, not so much on the public airwaves and a lot of people I know aren't so crazy about my colorful metaphors. When I found out that my aunt had the address for the blog published in her CHURCH'S newsletter- I almost peed my pants. WHAT?!?! Yeah- she did.
It's not like Sheboygan Dan linking here from his blog... I was thinking it would be like bringing Andrew Dice Clay in for a sermon.

Hey, I don't cuss THAT much- do I? It just happened to be right after one of my more "colorful" blogs where I was having chemo and feeling sorry for myself. Not the best time to send a congregation here.

Hm. See how this works? I totally didn't mean to go in this direction, but there it is. And thanks to chemo brain- I don't even remember what I had meant to talk about when I fired this baby up and signed in. Maybe that's a good thing.

Prep

Well, the clock is ticking. 17 days. Honestly, the part that freaks me out is the ventilator. I'm hoping they give me enough meds that I won't remember being on it. "Try not to fight the ventilator" uh-yeah. Last time I checked, breathing was involuntary. Sheesh.
If only it was JUST a surgery. And I mean that. I also have to think about everything that goes along with it. I am the bill-payer, so I have to train the husband to do the bills while I'm out of it. Then there's the matter of WHO will be in Baltimore with me because no one person can just go and stay for the entire 3 weeks (figuring 2 in the hospital and 1 after discharge). Who's going to be there what days and such and where my kids will be. Then disability coverage- blah, blah, blah.
Oh AND I have to make sure I still have a job to come back to when I DO come back... whenever THAT is. I was told that I will still have a job... but I'm needing that in writing because who the hell else is going to hire me? REALLY. I wouldn't blame them. Even though hopefully I will be good to go for quite a while after I heal from this surgery. Yeah- a little chemo and some docs appointments but I shouldn't be needing any more surgeries after this one. Hell, I should have only had 2 surgeries MAX in the first place. I just took the long way around (the dumbass path).
I shouldn't have to worry about any of that other crap by the time all is said and done. And BOY am I ready for it to be done. Wishing I could just take a pill and wake up in 2 months.

So, I'm on the phone pretty much all day today... have I mentioned how much I dislike talking on the phone?!? Well- I DO! I end up making a thousand calls just to leave messages so they can call me back at the worst time possible. Just about every time.

I know- I should not be worried about who's taking care of my girls or the house or whatever and I should focus on getting the surgery and getting better. it just doesn't work that way. I WISH I should just say "Eh, screw it. YOU take care of everything." Well. I COULD. I could say that... it doesn't mean it will get taken care of.
At least if I do it myself or rather, DON'T do it myself- I can only blame one person... ME. If I hand it to someone else to do- I am not permitted to bitch when stuff goes wrong because 'Hey, they were helping you out.'

You can see my delimma now.

grrr.

This only underlines the phrase "Suck it, Cancer."

Back to Life

Well- we returned to little 'ol Belpre Ohio Monday evening. New York was everything I had imagined it to be. I know to some of you, going to New York is no big deal. Hell, some of you live there. But to me- it was huge! I've seen the 'IT' cities on both coasts now and I can boast that a little.
It kind of felt like it's were I should've been. When I was in High School, I'd entertained the idea of saving up $500 or so and taking off to LA or NY. I can tell you right now that I don't think I'd have regretted going to NY. I don't know that I'd be a Broadway star... I'd probably be waiting tables still- but who cares? It would be New York!!
We got to the hotel Thursday afternoon (right on the waterfront in Jersey). Saw the Statue Of Liberty Friday, then Jason and I got into Manhattan Friday night- we walked out of Port Authority and the New York Times building was right across the street. We walked most of the way with our mouths hanging open. When I realized I looked like a total dork tourist- I closed my mouth only to plaster on a perma-grin for the rest of the walk. We watched "Wicked" which was awesome! Jason even liked it. Maybe he'll even read the book now.
We had a hell of a time getting BACK to the hotel via bus. Port Authority is confusing as all get out! We got on the LAST BUS to Jersey. I wasn't worried- there's more than one way to get somewhere in NYC. But the husband gets a little freaked anxious when things don't go smoothly. I PREFER things a little interesting. It's how you learn.
Give me a week in NYC alone- I'll have that place figured out.
Saturday we went to Central Park and took the girls for a carriage ride in their pretty dresses. Had a vendor hot dog, then went to FAO Schwartz. We couldn't really get too far past that with all the bags we were carrying- so we took a pedi-bike (or bike rickshaw) back to Port Authority- then bus- then hotel. Room service for dinner.
Sunday- we were toast from all the walking. I ended up in only sandals from Friday afternoon on- ankle blisters were hating on me. We got started late-which I found out is a BAD thing on a Sunday... EVEN in New York.
We took the subway (Jason says "The Sub" like he's all cool- LOL) to Ground Zero. Sobering. You can't really say anything there. You just shake your head a little, take pictures and stare.
We walked around town after that- I actually got to visit a shoe store. Bought one pair. That was the extent of my NY shopping. Guess I'll have to go back for more high fashion. hee hee.

When we got back to the hotel Sunday night- I got bad news from home: Our dog, Boss Man, died in his sleep Saturday evening. He was an old dog, very neurotic and nervous. Every time we left him we were afraid he'd have a heart attack from anxiety. He was staying with a friend of mine and her son. Her son evidently latched right on to Boss and gave him lovins and attention. He was buried right next to my Whirlie Girl on my Dad's property. While it is heartbreaking that we were not there for him in his last days- it is comforting to know that he was getting attention and good care (and roast beef) before he went. And it is a relief to know that he went peacefully. We knew he was getting old and worried that we would have to decide between a $3000 vet bill and poor quality of life or euthanization. I don't like making those decisions. He went the best way I think he could have gone.
Rest In Peace, Big Boss Man. You were a good dog. You and Whirls are missed terribly.


Got back home to more reality Monday night. Laundry... the bane of my existence- really. I have too many "eh" clothes and not enough "WOW" clothes. But too many clothes overall.
Somehow- the girls' room seemed messier than when we left. Probably because I refused to see it and feel the need to clean before we left. No matter.
So after less than 24 hours home I started reviewing the stuff I'll have to do for surgery. Time to crack down on getting organized as far as who will have the kids- who will stay at the hospital with me- who WON'T be there until later- what the hell I'm gonna do in Maryland for a week after I'm discharged and such.
Lots to do... is there enough time to do it?

Being A Part Of It

A somewhat quick note.
Hoping I didn't make anyone mad with the last post. Really.

We have arrived safe and sound in New York. We've settled in to the hotel in Jersey and took a stroll around the block. I can't upload from my phone or I would show you the awesome location. We can see the NY skyline when we walk out the lobby.
I WISH I could take everyone with me, and I wish I could thank everyone who made this possible for me. You have no idea what it means to me...

Health

It's late. I can't sleep so I'm watching the Golden Girls.
I've been thinking about a question I was asked yesterday. I've been asked the same question before... quite a few times actually. And people hint to it and such, but I think the out of the blue way it was asked caught me off guard.
While I was talking about the surgery and jokingly saying that while I'm on a ventilator after surgery- it will be freaky. That I may have to do charades (uh, is that how you spell it?) and someone will end up giving me a sed-a-give.(The last video I put in made me think even more.)

I was joking about that scene in Young Frankenstein- when I got THE question...

"Are you SPIRITUALLY healthy?"

Uh. What the hell?
That's kinda like asking me if I'm ready to die. At least that is how it srtikes me.
I'm not often speechless- ask anyone who's known me for more than five minutes. But THAT irked me and stopped me in my tracks. There aren't too many things I keep to myself, but that is one of them. That is between me and one other. None of your damn business, thank you very much.
I get why someone would want to ask- but most have the sense to just keep that question to themselves. Kinda like the "Do you have a colostomy bag?" question. If I want you to know- I will tell you. And there are some people who should check themselves before they go asking OTHERS that question.

I'm good with all that. And I will leave it there.

It's funny... the comments and questions I get- having cancer, and being 'terminal.' But shit. What really gives someone the set of sparkling brass balls to ask a terminal cancer patient that question?

Countdown.

3 Days to New York. 31 Days until MOAS.
Guess which one I look forward to the most?
It's a shame that both couldn't be wonderful things. Hm... If I reframe it- The surgery is a wonderful thing. It's just a necessary step to take to make things wonderful. Kinda like going to college: putting up with cruddy teachers, homework, sleepless nights, tests and so on to get your degree so you can do what you want. You gotta pay the piper ahead of time I guess.
I must've only put in a down payment and now have a balance. That will be evened up shortly.


My oldest is now officially 4 years old. We had her party last night. Did I get pictures? No. Dammit. I was doing my headless chicken imitation. Hoping enough people around me got pictures and will be nice enough to send them to me. My Aunt Mary was all about making it a big party. She put on the dog for us. (Thanks Mary) Mom, Micki and Misty were LOTS of help. Iris had a blast. I know lots of people don't see the need for a big party for a kid but she really was happy to see everyone there. Plus, it's over the summer and she was WAY lonely- she talked about all the kids she saw there all the way home and through the bedtime routine. I like big parties. Evidently so does she. My only worry is that invitations may be seen as 'present greedy.' But it's not like that- I just figured we had an entire pool for kids to play in... it was paid for, so why would you NOT invite everyone you'd think would have fun? So that's what I did.
I did't get in. I don't know that I will be donning a bathing suit in any kind of crowd ever again. I'll reserve that beautiful sight for immediate family and good friends. (It would actually be more appropriate for enemies... cuz it's more like a punishment than a privilege.)

The Fam leaves for New York on Thursday. Me, the Hubs, the Girls and the Mother-in-law. I am STOKED! I've bought tickets to see "Wicked" on Broadway, Friday night. Have no idea what I'm wearing. Hell- we'll be flying by the seat of our pants the entire weekend. Of course we have specific destinations, but then we have to 'plan' for the unexpected. I don't like a strict itinerary... I may decide to stay in one place longer and may leave another WAY early.

When we get back...it will be a whirlwind- getting the downstairs ready for company. I'm hoping that I'll have a houseguest over Thanksgiving. But before then I may be needing extra help with the girls but I don't want to ship them off all day- every day. It would be nice to have someone to wrangle the girls with me when Jason does the yardwork and such. The Dungeon is a mess and I either need to clean it up or I need to build a wall so that people coming into my house can't look directly at the mess in the den. Hmmm. A wall just might be easier.

I am kind of in limbo at this point. I worry about not being on chemo until surgery. I look at the number of days I have until surgery and it scares me. I am down to 2 pair of pants that fit comfortably. 31 more days. At the same time though, that's a lot of time to get healthy. Baby steps.... I made the mistake of getting over-ambitious with my walking goals. Now I'm sporting a blister on my heel. Poo. And boy, did I hurt the next day. BUT that's not going to be an excuse. I don't want to hurt after walking... Sore GOOD- Hurt BAD. (in my best Frankenstein voice)



Hey- gotta get in walking shape for New York- right? And I don't see any reason to stop after that.

It's a good day. Gonna be a good week. (The exception being the 2 hr plane ride- eek!)

I'd like some cheese with my whine.

This is kinda "The Month Off." In more ways than one, really.
Off Chemo- temporarily. And I feel off.
I think it's the anxiety of the surgery. Since I've had a total of 5 abdominal surgeries (2 cesarian sections, 1 hemicolectomy and 2 POS IPHP surgeries) in my life, I can say with certainty that this surgery will suck. Suck BIG TIME because when I had the c-sections I thought those were bad. Then I had the hemicolectomy- THAT sucked. Then the POS, unnecessary, just want my insurance money, practice surgeries sucked even worse.
Dr. Sardi said that those would basically PALE in comparison to the REAL HIPEC surgery.
He said to exercise, smile, take multi-vitamins and 1g of vitamin C to get ready.
I'm just going to be honest with myself. I'm fat. I'm either lazy or tired. Or both. I need a Jillian Michaels to get in my face and talk shit to me to motivate me. I see workout time as selfish, but not selfish if it's improving my health. The days go by so fast and before I know it- it's been forever since I've done anything active. I was putting in a real effort to get healthy after having Vera in December of '08. I had actually started to like jogging. Knocked out of that game by diagnosis/surgery. From there, it was all downhill. Chemo, more surgery, more chemo, little break, another surgery and more chemo. MIND YOU- I gained 30lbs on chemo. I've been off chemo for a bit now. I still taste it. I still get nauseous. I still wretch at the thought of the FEEL of it and at the idea of those disgusting "lunches" they provided for chemo patients.
To say the experience has been traumatizing would be an understatement. I'd like to be around long enough to see this chapter of my life as the "Bad Year(s)." But that really isn't fair to my kids, is it?

"Yeah Vera, the 2 years after you were born totally sucked balls."

I don't know that I would put that in her baby scrapbook... if I ever got around to putting one together. But if I did- they'd probably make some cutesy decals and paper with frownie faces and IV poles right?

Not really fair is it? That she got the crap end of the deal. She gets all the hand-me-downs and a sick Mommy. At least Iris got the best of me for a couple of years. Not that she'll remember them. She'll remember me being sick. I'm just hoping that will spark her interest in becoming a GREAT doctor. Not like the shit one I got stuck with.

It kind of bothers me when people say "Well, you LOOK good." I know I've said it before, but I've heard it a lot lately. What they mean is "You're fatter than I thought you'd be." or "Isn't chemo supposed to make you LOSE weight?"

If one did't know I had cancer- they'd just say "Woa! She's Fat!" But I get the "Look Good" pass because I have cancer.
Can you tell I woke up feeling sorry for myself today? I think it all started with looking at pictures of me that were taken over the last couple of weeks and noticing just HOW fat I've become. Not that it's a beauty contest- but dammit- I'd like to feel good about myself in ONE way. Isn't that part of your mental health? If my insides look like hell- at least the outside could be to the contrary.

Just had to whine.

The Mother Of All Surgeries.

I won't say the title doesn't scare the living shit out of me, because it does.
But I've got a date anyway. So I guess I will hear how brave I am or something. I'm not brave and I can't figure out how the hell I inspire anyone just by getting up and doing what needs to be done. And some days I don't even do that. Don't get me wrong- I WANT to and I'm working on it. But it's humbling and more weird than anything else to hear that I would inspire anyone at all. I'm much more used to hearing how I made someone laugh- that's not inspiring- I mean, it's NICE to make people laugh. It makes me happy to do that. There's nothing better than soomeone genuinely laughing at you being funny on purpose (so that is laughing WITH me, right?). I'm SOOO not used to people being all serious around me. I don't quite know how to respond. I kinda give an awkward smile and say thanks. What else do ya do?

And since you can't tell me to shut up and get on with it, I've managed to get off track within the first 5 sentences of this post.

Sorry about that.

ANYWAY- I do have a date set for the MOAS. September 16. Only 2 days later would have been the fly date for Italy. Instead I will be on my ass with tubes hanging out of me and hopefully under some SERIOUS medication. And actually September 18, 2009 was the date of my first POS (Piece Of Shit) surgery. Otherwise known as IPHP or the POINTLESS surgery. And YES, one day I will get over being bitter but not anytime soon.
I was happy to finally meet THE Dr. Sardi. He seemed to be on top of things and seemed to genuinely care. He said he will be testing my cancer against a variety of chemotherapies to see which it responds best to- and he will use THAT chemo to do the wash. Makes sense to me. For those of you who don't know much about the surgery- It's a 10-18 hour surgery, I will be in the ICU for a day or two, I will be on a ventilator, I will have a catheder, an NG tube and probably a few other tubes for various purposes. The hospital stay is typically 10-14 days. Dr. Sardi said it will feel like he's run over me with a truck... twice. And hearing from others who've had the surgery- it's about right. Woo. Hoo. But at least he's honest. I don't want to go on and on about him because I don't really trust myself anymore. I've shown nothing but poor judgement in picking doctors. The last smart pick was Dr. Cook- my PCP and my daughters' pediatrician. That was 4 years ago. So with all the brain cells I've fried I am trusting those around me to help with decisions.
My sister has been there for 98% of doc appointments and surgeries. She's asked questions and I should have listened to her- or at least turned her loose on Dr. Arnold. (I can think of a lot of people I'd like to turn loose on him.) And I wish I could just take her with me to all my appointments because she's kind of like the voice of "What the Hell?" instead of the shrugging of the shoulders and saying "hm, whatever you want, Doc." when it comes to me- but isn't so aggressive when it comes to her- so I try to be that when she needs it. I was glad she went with me to Baltimore. I hate that I can't trust my own judgement now. I hate that I took up for Doctor Arnold because I THOUGHT he was doing all he could for me-- of course I thought that I wanted to be a ballernia when I was 8 too.
bah! Shut-UP, Rachel.

Anyway- Dr Sardi will be just getting back from a conference in Sweden about the HIPEC, I believe. AND the following Sunday a walk will be held in Baltimore to raise money for and awareness of the HIPEC. (http://www.firstgiving.com/heatit) Odd coincidence. My girls are actually going to be there for the weekend and will be participating in the festivities. I'm still trying to hammer out the logistics of who will be there and when and who will be taking care of the girls and so on. That ALONE is stressful enough.

Until check-in on September 15th, I get to be there and have fun at Iris' birthday party, go to New York for the first time in my life, check out the Warren/Belpre football game and do a few boxing workouts.
My stomach has never looked worse- My self-esteem is on the fritz.... feeling fat and hideous. I want to lose a ton of weight but will have to just aim low because docs don't want me dropping pounds. Kinda wishing someone put me on a strict diet.

Oh- did you catch the New York part? A friend (and many others) has done a bunch of legwork getting me a dream trip to New York with the family. Statue of Liberty, Coney Island and a carriage ride through Central Park for the girls. Time to buy a couple of tiaras.
I am humbled by the kindness of others. I found out that people I know, people I kinda know and people I DON'T know were all conspiring to get me the New York trip I'd been wanting. Yes. People I DON'T know. It's freaky, overwhelming, humbling and amazing at the same time. I can really only hope to pay it back by paying it forward. I hope that the shit I stir to get hospitals to be more accountable and easier to deal with will benefit someone in the future. (And that is just the tip of the 'stir' iceberg... beware)
I don't think of myself as socially awkward, but I haven't fiigured out an elegant way of being on the receiving end of charity. It's been over a year and I still don't know how to NOT be awkward when someone wants to GIVE me something. I always find myself thinking I should have done something different to say thank you when speaking with someone. ugh. I don't ever want ANYONE thinking I'm not grateful- because I don't know how to properly convey my gratitude except to say "Thank you." a million times. Just know- I don't say stuff I don't mean. And those 2 words are the most sincere words that come out of my mouth. I put "Thank you" right up there with telling my girls "I love you." Yeah. It means that much. It may roll off the tongue easily and some people throw both phrases around like nothing, but those are the 2 most important phrases in my opinion. Don't say them if you don't mean them.

That being said: Thank you all for reading and caring. It means more than you know.

Great Break

I had a fantastic weekend with a few old friends from my Navy days in Fallon, Nevada. It was so great to see them and to sort of forget about the cancer or at least to not worry about it for a while. You never really forget you have cancer. It's not like putting your sunglasses on your head and looking around the house trying to find them before you look in the mirror and realize where they are. Nope- you can't shake that one. BUT you CAN not care about it for a day or two. It's a nice mental break.

We visited some antique stores on Friday and the WWI Museum in Kansas City on Saturday. Other than that we hung at my friend Karen's house and talked, drank a few and watched old videos. (I forgot how totally gross the guys were... too funny.)
It was really great of those who did make it to come. I know it was a lot of work and money to get there. I'm hoping that with a year of advanced noticed- next year's reunion will be bigger by a few people. Karen said my only job until then is to stay alive. I'll do my best, Karen.

In the meantime... surgery. Another. Damn. Surgery. Hopefully it will relieve the swelling belly. In more ways than one I'm sure. Not eating AND removing all the friggin' cancer mucous in my abdomen.
Over the weekend we (or I) invented a new concept called "Nad Rules." Nad is the cat I had in Fallon, Nevada. I had him for a while when I was living with Karen and when I got transfered to Corpus Christi, Texas I couldn't take him with me. Karen still has him- 13 years later- and he looks fantastic. Plus he's one of the coolest cats I know. ANYWAY... He really enjoyed jumping on the pool table to lay down. Well, we were playing pool. So I said "Nad Rules" we play around the cat and whatever he does with the balls is totally legal. If he sinks the 8 ball- HE wins. Somehow it became a term for doing whatever you want or changing the rules to whatever, whenever. So if I use the term- you've all been schooled.


I'm leaving town yet again tomorrow. Setting off for Baltimore and meeting Dr. Sardi. My sister and I head out for the 5 hour trip around noon and staying with a friend. I should get a go date for surgery. And HOPEFULLY it will be soon. The Secretary told me he is scheduling into September... LATE September. That would mean I'd have to go back on chemo. I really hope he will see me as urgent and work me in EARLY!!! (Nad Rules) Like NEXT WEEK early.

When I know- so will you.

Short update

I titled this post before I started typing- I'm not changing it no matter how long this post ends up being.
I SHOULD be doing something more productive than this blog right now but had to give an update.
I am busy with paperwork, chores, packing, being a mommy, being a wife, an air talent (for what it's worth) and so on.
I've packed and am MOSTLY ready to head to the airport for Missouri. Leaving the house at noon. Plane leaves @ 3:40. Starbucks is screaming my name! I'm excited to see my navy buddies. Only a few can make it- but it will be fun, none-the-less.

Today I need to make a couple of phone calls to get my pathology slides to Dr. Sardi in Baltimore (with whom I have an appointment on Wednesday then HOPEFULLY scheduling my MOAS). I have to call OSUMC to get them though and I think my name is one the 'tainted' list because of what I've said about them here on this blog. They never did fax my records to Dr. Sardi (that I am aware of) even with the "ASAP" put on the request/release form.
I ended up calling my personal primary care provider's office where it's my Doc, her nurse and the secretary. It's WAY more personal and I KNOW I can rely on them. I asked Brooke to contact OSUMC to get my records faxed to HER so I can have all my stuff centralized and get copies for myself. They will fax whatever I need to whoever I need them faxed to. Plus, she id digitizing my records. Yay for technology.
So I will have the rest of my records sent to Dr. Sardi and Dr. Nemunaitis in Dallas. My uncle suggested him because he is in cancer research. Things like gene therapy, cancer immunizations and so on. So I'd imagine a visit to the Lone Star State is probably in my near future.

I was happy to get the phone call from Dr. Sardi's office. "Dr. Sardi thinks he can help you and would like to meet you."
That's music to my ears.

busy

Time seems to fly just when I don't want it to. The last 2 weeks seem like a blur. It's almost August and it's almost GO time. No, I don't have a date for surgery or even who will be doing it. I would imagine that if Dr. Sardi takes me- Ii will go with him. Hopefully he will be able to navigate amongst the scar tissue and mucous and possibly avoid a colostomy bag. Yes, Yes. I know. At least I'll be alive. And that's all I'm going to say about that.

So I was in Cleveland on Tuesday and Pittsburgh Saturday. Totally different reasons. Thursday night Iris spent the night at Micki's (my sister) and then decided on the way back from Pittsburgh Saturday evening that she wanted to stay there again. Which makes me happy- a little sad because it's a night away from her, but I like seeing that if anything happens to me that she's got a bond with Micki. I hope Vera has the same bond with her. We visited my Dad this evening he took Iris for a ride on his new mower- she might as well have been on a camel, she was gleaming! I love that the girls adore him.

This week is going to be hectic. My co-host (the main guy) on the morning show is off for the week and I will be flying solo there. Then helping out with Iris' Vacation Bible School- then boxing Tues and Weds to get the frustration out. Yep- Fat Girl Boxing. Well- just the training. I don't think it would be particularly wise to get in a ring with my messed up midsection and no omentum fat. But the workout will do me good.
THEN Thursday I'll be flying to Missouri for a 'reunion' with my Navy buds. I am looking forward to it... people I haven't seen in 13 years!

And even though I'm not dead- THEY haven't forgotten about me.

Smiles.