Monday, December 27, 2010


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.

Wednesday, December 15, 2010

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.


Monday, December 13, 2010

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.

Friday, December 10, 2010

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....

Wednesday, December 1, 2010

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.