Thursday, July 1, 2010

Readers...

I got a call yesterday from The James Cancer Center at OSUMC. Weirdest thing- it was the Patient Relations people. (For the life of me, I can't think of what the actual department is... chemo brain) Evidently, someone there reads this blog and brought it to their attention about the delay in getting my paperwork to the Doc in Boston. They called to make sure the problem was resolved. I didn't want anyone getting in trouble, I just wanted my stuff taken care of. I was going to have to call in again for my CT discs to be mailed, but the lady I talked to said she'd take care of it and call me today. Nice.
And since they are probably reading THIS- I wanted to say that overall, my experience at OSUMC James Cancer Center was positive. I liked Dr. Arnold (and staff) I think he was very professional, but he was hesitant to give me a real prognosis which was frustrating- I do understand why he didn't though. There aren't many guidelines for my particular type of cancer, so there isn't really a true prognosis. I think he did all he could do for me. I know that the hospital doesn't do the MOAS yet and from my research- that's what I need. I especially loved the nursing staff on the 9th floor of Doan Hall. They were all wonderful. I've really only had issues with the sharing of records and with the Oncologist I saw last year- who is no longer there anyway.
So- Thank you James Cancer Center.


I am still amazed at the people who read this blog. I look on my map and see that someone in Arizona is here a lot and someone in Hungary visits often. I know there are more I am unaware of. I wonder what this blog does for those who don't know me. I wonder if it helps them get insight on how one person copes with the diagnosis because they are close to someone who has cancer and wants to better understand THEM. I wonder if someone is reading this for research. I wonder if there is a doctor reading this that is thinking to himself "I want to fix her." So curious.
Until recently, I had ZERO idea that my uncle reads this. Though I am thankful that he does because I just might have a fighting chance through some avenues that I didn't know existed.

As for me today... I am sick. Side effects from this chemo are brutal. Nausea is never ending. I taste medicine constantly, my guts are yelling at me all the time. Loudly. Soon I will give them their own air shift since they like to talk so much. I am tired and very cloudy. I feel stupid. I can't remember names, faces, conversations and such. Must really be annoying for those around me.
I'm really not as tough as I'd like to think I am.

My Haiku:

Scars on my belly.
Never wearing bikini.
But I shaved my legs.

Wednesday, June 30, 2010

Off with the Fannypack

I get this POS fannypack off today- hooray! In the meantime, side effects are kicking my ass. Nausea is constant, intestinal distress and a little fatigue. My hair isn't very pretty- I still have plenty- but it's dull looking and just blah.
I'm attempting to manage nausea during the day with some ginger candy chews my sister found in Athens, in the hippie section of Kroger. Fine by me!
We're going to the lake this 4th of July weekend, getting a cabin with the Greenwalts. Should be fun, as long as the side effects give me a break.
On the other vacation front, I think the fam and I may be headed for a week off sometime soon. Thinking New York- thanks to a couple of friends... one I've never even met. Crazy right? I'm constantly amazed by the generosity of others. I feel like I haven't even scratched the surface of paying it forward.
I will keep trying.

I am excited to see what other leads on treatment may hold. Hoping to be elegible to participate in clinical trials for new 'stuff'. My uncle has pointed me in a new direction- a new world of options I didn't know existed. It's frustrating to think there are these new treatments, but you have to DIG so hard to find them. Would I have even found out about them if he hadn't mentioned them? Grr. I'd hate to be on my deathbed and just find out "Oh, if you'd only done THIS..." B.S. I say. There should be booklets for different stages of cancer and different treatment options for what you have and a LIST of WHERE and WHO that may be able to help. If it weren't for the PMP lists and my uncle- I'd be shouting into the nothing-ness, hoping SOME doctor, SOMEwhere can hear me. Hell, I'd even considered putting my story on video and uploading it to You Tube in the hopes that someone would see it and tell some that knew someon that knew someone that might know what to do.
It's a tangled world of what do I do now? Which treatment is best? Who is THE best doctor? How do you make that decision? What if you went to the OTHER doctor? Would he or she be able to "fix" you if this one couldn't? Does it matter? Who do I listen to? The people who have been there? My gut feeling? The doctors that suggest?
Like I don't have enough doubt in my head already. I'm so afraid of making the wrong decision- and ultimately paying for it.
What to do, what to do?
Pfffft. I have laundry that needs done- Think I will concentrate on the fact that my hot and cold water lines are crossed... must fix that today. And have a nice glass of wine tonight. The cheap kind of course. Nice bubbly Lambrusco should do the trick. In celebration of detaching from this damned Fannypack.
Another Haiku (The idea of haikus inspired by Cindy Myers.. Thanks lady)
Suck it Fannypack
You're really no fun at all
I should Bedazzle


I'm waiting on a couple of doctors to call me today to say they are REALLY interested in me and want to do all these new, innovative, cutting edge procedures on me... free of cost. har har.

Heard from Dr. Goodman's office yesterday- they have everything but CT scans. So he should be calling me by Friday. they said to call them If I haven't heard from him by then.
Also waiting on The Mary Crowley Cancer Research Center to call me back. Waiting on my sister to call me and tell me that her pathology from HER surgery is clear. AND my mother is having her colonoscopy today. I think she should be done by now. I'm worried that might bear bad news. I'm worried both might bear bad news actually.
**update** Mom and Micki both all clear. Yay!**


I just hope MY crappy diganosis may help others catch possible problems early. And hoping that if I can help with a new treatment, that it will help if the girls test positive for Lynch Syndrome.

Fingers Crossed today for nothing but good news.

Thursday, June 24, 2010

Update.. feelin' good.

I talked to Dr. Goodman's office and they have been getting paperwork in. I should be hearing from Dr. Goodman Monday.
I think I'll be starting an (a-hem) asparagus experiment (you know- the viral e-mail "Asparagus Cures Cancer" deal that's been passed around) as soon as I get some canned asparagus. Nothing like starting your day with a couple spoonfulls of blended asparagus (buh-arfff). I figure it can't hurt... and maybe it would be okay in scrambled eggs or something. Never-the-less asparagus is healthy and I should be eating more of it anyway.

I will also be contacting the gurus at Mother Earth Food about herbal 'stuff' to take. Haven't gotten around to the essiac tea ((shudder)) but I will. I've been taking vitamins and eating my veggies. The hardest habit to get into... drinking more water. Need to. Shame on me.

I also got a free copy of "The Survivorship Net" and read it to Iris. It's a cute book... makes you a little misty-eyed. But it was a nice story about how everyone around you helps weave a net to catch you when you fall. The prayer warriors, the people who bring you dinner, the people who are there for a text or a phone call, the friends who offer inspiration with a letter or a card, the friends you've never met in person who encourage you to keep going, the doctors who do all they can for you, the nurses who help you- make you laugh with little notes (you know who you are), the volunteers who unplug your chemo pumps (so you can be mobile) for you when you just don't feel like it, the husband and family who do everything in their power for you, the children that love you and tell you you're beautiful no matter how ugly you're feeling that day, the friends who are constantly scheming to do something BIG for you, the mother-in-law that watches your kids 4 days a week, the co-workers who make you laugh when you're having the worst of days, the distant friends who give words of support every chance they get, the dad who does your yard work so your husband can help you with other stuff, the mom that is there when you just need to get out, the sister who's door is ALWAYS open..... get the idea?
I couldn't POSSIBLY start naming names, I would surely miss someone and I don't want to do that.

But I have a GREAT Survivorship Net. And today I've decided NOT to die in a year. So- Kiss My Ass Cancer.

Monday, June 21, 2010

The Waiting Game...

I was stoked on June 4th when I was in Columbus, that I had gotten all the necessary paperwork signed to get my records sent to Dr. Goodman. I figured it would take a week or so to get all that crap faxed... so I e-mailed Dr. Goodman last week to see if he had all he needed (he would have been waiting on discs in the mail too.) He says he hasn't gotten ANYTHING.

WHAT?!?

Nope, not a thing. Not a thing from OSU Medical Center, nothing from the Strecker Center where I get my chemo. (release slips have been signed for both)

So I made some phone calls on Friday to straighten out the problem. The Strecker was apologetic and said they would get on it immediately... but the lady I spoke to at OSUMC was kinda snotty. I went to Dr. Arnold's OFFICE and filled out the request forms THERE to see that it would get done without any complications. Well, I was informed that where I was calling was at the hospital, not the office and that they only go to the office on Tuesdays and Thursdays. Hmmm, unless I'm wrong, there have been at least 2 Tuesdays and 2 Thursdays since then that you DIDN'T get the paperwork and get the stuff done. I will be calling today and tomorrow. And if for some reason the stuff doesn't get done by the end of the day tomorrow... I will simply pass the phone number on to some friends who will help make sure it gets done.
I PATIENTLY waited 2 weeks so they could get it done... 2 weeks might not be much to THEM, but it's a lot to me. It means 2 more weeks I have to wait to talk to a new Doctor that WANTS to treat me. 2 more weeks I may have to wait to get a surgery that MAY save my life.
So I hope the office gets their shit straight because I have an army of people just ITCHING to give them hell if it doesn't get done.
I love my friends. I'll release the Kracken on them... that will be a bad day for them. You don't want the wrath of my friend Karen (the Kracken)on you.... ever. She's relentless. I'm glad she's on my side.

I get irritated that every weekend I never seem to accomplish anywhere NEAR what I had intended on accomplishing. I don't know if it's a matter of expecting too much or being the super-underacheiver that I am. Maybe a little of both. THIS weekend, I hope to take the girls to a 'Walk with the animals' at the county fairgrounds. I hope it's not too hot.. cuz fat girl can sweat to put those WWE wrestlers to shame. Ick.
This past weekend- I did spend a good afternoon with my sister and dad. Though sometimes my sister can make me feel an inch tall. I'm not organized enough- I'm forgetful and a thousand other annoyances. She's still recovering from her surgery (thanks to Lynch Syndrome and cancer) so I try to help her out and let the other stuff slide off my back.

I wonder if there is a need to go through a depression to come out that much better on the other side? Is this my rock bottom and eventually I'll find my footing and come out of this funk with guns blazing? I sincerely want this to be overwith. I Really PREFER the happy me.

In honor of the "Happy Me" returning soon, here's a haiku...

Chemotherapy
Won't last forever, I think
It sucks major ass.

or

Want a Daquiri
Strawberry or Peach is good
I have a hangnail



~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Best wishes and thoughts to Cancer buddies out there. Hoping Mark keeps recoverinng at lightning speeed, hope Barbara gets the Hope she needs, Hope Loretta gets good news at the doc appt, hope Dan stays clear- FOREVER!
And still crossing my fingers that the measly couple thou my team raised for Cancer Research yields results, and soon. For everybody.

Wednesday, June 16, 2010

New Day.

Lucky you.
You get to participate in the roller coaster of emotions that happens to be "Cancer Schmancer."
Feeling... okay today. Not great. Not horrible. Love the nausea that goes along with this fannypack. I think it's a Pavlov's Dog reaction that when I hear the pump adding another dose, I want to throw up. Luckily I don't. But sometimes it would just feel better if I did.

I'll be hanging out with this thing till about 2 this afternoon. Good times.

I am considering taking a 'me' break. I have no idea where I will go or what I'll do- though the beach sounds nice. Maybe just drive to drive, and see how far the cash in my purse would take me.
Too bad I can't get a break from thinking about cancer. I've said it before and I'll say it again: A disease like this does not deserve to be the all-consuming factor in my life. I don't want to be known as the cancer chick. I mean, I know I am to most of you because that's what this blog is all about. I kinda hope each time I write here that if I say what I'm thinking, then I won't have to think about it anymore. Sometimes it works, sometimes it doesn't and I just end up typing and crying. And crying about it later too. I wish it was like money... if I spend those emotions here, I won't have them later. (The bad ones, that is.)
Hasn't really been working lately.

Ups and Downs and everything in between. It's so hard to NOT think of everything as "will this be a waste of precious time?" I take a nap in the afternoon and I feel guilty because I'm not picking the girls up. I should be exercising, but I'm tired and if I did have energy, I should be spending that energy with the girls, or cleaning the house? Or should I make myself exercise because it may help me live longer? Or should I just pray for a miracle and spend the precious time with the girls? But if I'm tired, I'm worthless.
See what I mean?

I want a brain break... but how do you do that? If you have TOO much time on your hands, you go nuts with the barrage of STUFF you should think about and the stuff you're trying so desperately to forget.

Yeah, I realize I've gone downhill since talking to Dr. Rose. It was one thing to think I had 5 years. Who knows what could happen in those 5 years? A cure? Better treatment? Better prognosis? That's TIME. My Vera would be 5+ years and could- quite possibly have some good memories of me. And Iris would be 7. That's more TIME to be with my girls and myself.
But TIME is of the essence. You really DON'T know what you would do if someone said it was entirely possible that you would be dead in a year until it's the absolute truth. You can pretend to for a few moments. But unless you put post-it notes up all around your house with your projected expiration date- you would enevitably 'forget' your experiment.
If I can have the MOAS (Mother Of All Surgeries- as the PMP-ers call it) it won't be until October because I just had a surgery in March and need 6 months of heal time. Then I'd need recovery time after that. By the time all is said and done- ti will be just about 2 years out from diagnosis. And that's the PRD. (In Navy terms- Projected Rotation Date... the date you leave your current station and command. I think I will just use that term from here out. Because in the Navy- your PRD can come and go and nothing- or you can leave right on that date, leave earlier or you can get an extension. Seems applicable) Until then- chemo- but I can't have a key ingredient (Avastin) for at least 8 weeks before surgery because it can cause major blood loss. But the Avastin is a hard hitter to the cancer supposedly. Piss.
Can't win for losing.

I don't know how to shake the crud. Maybe a meeting with the new doctor will breathe some new hope into this shell.
I can't help but compare myself a bit to my aunt who died at the age of 30 after battling breast cancer. When was diagnosed she had a daughter that was about the same age Vera was when I was diagnosed. She died just about 2 years later. (too familiar) Her youngest daughter doesn't remember her. When she refers to her- she calls her "Lucy" instead of "Mom." And that BREAKS MY HEART. For her, for Lucy, for Vera, for me. I don't want Vera calling me "Rachel." I am and will always BE her Mommy. I think about that all the time. I'm just muddling through wondering again, what kind of mark have I made on the world? A scratch? A bug bite? No matter. All that matters to me is that my girls grow up happy... and have GOOD memories of me. I know, I know. Make videos, write letters, take lots of pictures. It's all so forced. MAKE GOOD TIMES WITH YOUR CHILDREN AND DOCUMENT IT SO YOUR KIDS KNOW YOU LOVED THEM.
Kinda takes the fun out of it though- doesn't it?

I desperately want my sense of humor back. Now, in all fairness, I CAN be somewhat jovial in reality. But I can't transfer it to this blog so easily right now. Just know that I DO still laugh and joke and do stupid things. I really just vent here. Sorry for you.

And my apologies for dropping the F-bomb. But if you know me at all, you had to know that was coming by the end of the post. :)

It is honestly a better day. Even better when I get this damnedable Fannypack off, jump in my insurance company's butts and have a Peach Snapple. Mmmmm. Peach Snapple. Reminds me of El Centro, CA- where we ate nothing but Cup-O-Noodles and drank nothing but Beer, Water and Peach Snapple. You can get away with that when you're 19... and the legal drinking age on base is 18. :)

Monday, June 14, 2010

Wake Up Call.

My husband and I had a fantastic fight yesterday. Even though we were arguing and screaming at each other, he had some good points.
I have been more bitchy at home, I am moody, lazy and a user. I think what sucks most is that if I don't change it- THAT will be how my girls remember me.
I kinda feel like my grandma did when she figured out she would be deep in the throes of Alzheimer's eventually. She didn't want people remembering her as an out-of-it old woman... staring off into space and looking through you when you talked to her. It was hard for her-it was hard for the whole family watching her go through that.

I wonder if I'm doing good for my daughters, or would it be better to minimize my time with them. FOR THEIR sakes. I don't want them to remember blubblery, sobby, whiny, bitchy, crazy me. I'd rather them remember me without the drama.
I should just take off in a mini van and travel the country alone. I hate being a burden on everyone around me. My dad mows the grass because I need Jason to help me with the kids, he worries (Though he tries to stay tough, the fact that both of his daughters have/had cancer ca't be good on the parent heart). My sister has enough to worry about, My MOM has more than enough to worry about.

I hate being the load everyone else has to carry. I piss and moan and whine to friends... they probably have enough going on in their lives without having to humor me.

Right now I contribute nothing to anyone. And I don't know that it will ever change no matter how much I want it to. I can't get past being pissed at the world for this situation. Yeah. I'm still pissed. And bitchy.

and to make it all better. Getting Chemo right now, sweating, nauseous, tired. Waiting on that fannypack.

Fuck Cancer. I try not to use that word here. But really...F.U.C.K. Cancer... that's how I feel right now and dammit... it's my blog.

Friday, June 11, 2010

You never know until you're there.

I was talking to a friend the other day about the "Live each day as if you'd die tomorrow" saying. And funny enough, another friend posted a blog (http://iwantnina.blogspot.com/) yesterday about her love of books and the topic of "If you had a year to live, would you be doing what you're doing now?" came up.

I've had probably TOO much time to think about that. Well about that and about a million other things. It is simply impossible to "Live life to the fullest each and every day." Sorry. But yeah- IMPOSSIBLE. You know- the laundry still needs done, the toilets need cleaned, grocery shopping needs done, dinner needs fixed, I still have to work because we have bills- and unfortunately you don't get paid to just sit and have cancer- even if you're pretty sure it will kill you soon. Besides- while you're dying- it's hard enough to find energy to do all the things you think you should be doing. And if you DID have the money to do all the stuff you want to do and got to do it, you'd be friggin exhausted from every day. It's a bit funny to me to hear the "inspirational" songs "Live like we're dying" "Live Like you were dying" and so on. I AM dying and other than taking more pills and paying attention to what I eat, chemo and more doctor's appointments, I'm not doing anything that different. I do 'take in' more- I watch my girls play and whine to myself about not being here for all the stuff the girls will do when they are older, I snuggle them a bit more and squeeze them a little tighter. I cry at the drop of a hat. I look in the mirror every morning when I put on make-up and wonder if the mortician cosmotologist will put my makeup on the right way for my viewing. Will she or he put blue eyeshadow on me? Grrr. (I will HAUNT YOU IF YOU DO!!!!!) Will they load my lashes with mascara the way I like to? Probably not. Will my sister pick out a dress that I would pick out? I'm so picky- it's probably a good thing I'll be dead so I won't be self concious about my jiggle belly and lack of hips... maybe they'll bury me in my kymaro body shaper. (good luck getting it on me without my help)

That is MY version of "Living as if you only had a year left." Tick Tock.

I'm sure everyone is different. Some people go sky-diving, Rocky Mountain climbing, or 2.7 seconds on a bull named Fu-Manchu (or however the hell you spell it).
Eh. Maybe I should write my own song. It would go something like this:

My house is a mess
and I could care less
Except when I have
certain guests.
I'd like to see
Italy.
But Mommy guilt
keeps me.
What if I kick it
while I'm gone?
Who will recover my
Carry-on?
Someone will see
my underwear.
And I could really use
a few new pair.

I don't know that I could sell that to any recording artists.

I'm not being pessimistic- REALLY. I'm just being real. There are things that will not be crossed off my Bucket List by this time next year. I'm okay with that. I only have 3 weeks of vacation from work. ;) Am I REALLY going to get to see Easter Island... probably not. Italy is a maybe. Though the "Learn to ride a motorcycle" is a possibility since both my Dad AND my Father in Law have motorcycles... it's just suckering one of them into letting me learn on their precious bikes. hee hee. Hmmm. My list is somewhere. Mostly in my head. I should probably write it all down again. Bah! And keep that journal. I need to just keep my notebook with me. I think of stuff that I want done when I'm gone and will tell someone in passing but I NEED to have it all written out.

#1. Do NOT bury me with blue eye shadow on.

Maybe that's all I need to address.

Monday, June 7, 2010

Perked up a bit.

No, not my boobs... that's a lost cause.

But I, as a cancer fighter, have perked up a bit since finding a couple of good leads on getting treatment.
I called Dr. Goodman in Boston about treatment and what he could possibly do for me. I left a LONG, DETAILED message on Wednesday night. Thursday afternoon Dr. Goodman's secretary called me. Evidently my phone staticed (is that a word?) up while I was giving my number so she called 6 wrong numbers before reaching me. She had put my information in front of the doc who seems VERY interested in treating me. So interested, in fact, that he called me HIMSELF on Friday morning. So I've got about a million fax pages heading to him, hopefully as I'm typing this.
I don't know about any of you- but surgeons don't typically call me themselves. Hell, doctors' offices of any sort always have their secretaries do it for them. So to me- that is a good sign. We were talking about treatment, I'd mentioned that I had Lynch Syndrome just in case it had any bearing on treatment and he said "Your children will need to be tested for that when they are 20 or 21."
I said "I know, and I'd REALLY like to be around for that."
He said "I'll do everything I can."

I realized I hadn't heard those exact words from a Doctor. I wanted to break into tears after I processed it.

Now, with respect to Dr. Cawley- She is a fantastic Doctor and does talk with promise and hope and doesn't end a promising phrase with "...but..." She gives me hope too. I feel she is doing all she can for me from her position.

The 2 surgeries I've had have been "productive" I guess, but it seems I'd hear "there is still a lot of tumor there..." My thought was- WHY THE HELL DIDN'T YOU TAKE IT OUT?
The answer seemed to be that there wasn't 'time' or something. hmph.

Fine. I will take my cancerous abdominal cavity elsewhere.

I'm still making calls. I'm getting other doctor suggestions.... but I've got a good feeling about Dr. Goodman. I won't call it a 'gut' feeling, because I think by now we all know my guts are what got me into this mess in the first place. har har.

Wednesday, June 2, 2010

Lots to do

I called Dr Sugarbaker today to see if he'd take me on as a patient. No go. So I keep looking. I saw there was something promising in Boston. The next 2 days will be filled with phone calls and e-mails.
My cousin says she'd brew the essiac tea for me since it's a long drawn out process. Bluh.
More later...

Tuesday, June 1, 2010

Educate thyself.

Little things are getting to me lately. I don't know why- because they will still go on after I'm gone. I catch myself being more sensitive about comments than I used to be. For instance- I told my Dad about wanting to take the girls for a little vacation this summer even though we really shouldn't financially do it. My Dad's response was "Well, Vera won't even remember the trip." I know what he meant. We'd had this conversation before about affording a trip to Disney, but going when Vera was 4 or 5 because it kinda seemed that the 'Magic' would be lost on her.
"But I will." I told him. I know he felt like a turd after that. It wasn't my intention to make him feel bad but I just left it there.

A friend recently made an observation "That Doctor's appointment really messed with your head didn't it?"

Uh, yea. I guess you could say that. When all signs point to 'You have a year to live- good luck making your memory last for your two young children' it tends to stick in your brain... EVERY. WAKING. MOMENT.
It has rocked me to the core. How the f@#k could it NOT? I look in the mirror every morning wondering what I can do today that will save me?

My husband is in some kind of denial I think. He reads... A LOT. Always has. But has he done one friggin' ounce of research on what I've got? Nope. So when I talk to him about procedures or whatever else- I have to sit down and E.X.P.L.A.I.N. it to him. Maybe it's too much to ask. Maybe his books are his escape. But COME ON!! What does he know? Less than YOU READING THIS. If he was sick, I'd probably know more about his diagnosis than he did.

I don't know what the hell I want other than time. I want to freeze it. I wish Vera would sleep all cuddled up with me. I wish Iris wouldn't fight with me. I wish I'd had the girls 8 years ago so I'd have had more time with them. So they might remember their mommy. I don't WANT to write letters for them to open on special days. I WANT TO BE THERE. I bought a bunch of stationery with envelopes but I don't want to do it. I just look at those boxes. And that damned journal that I 'should' be keeping.

I don't even know how to scream loud enough.

Tuesday, May 25, 2010

More chemo tomorrow.

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

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

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

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

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

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

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

Thursday, May 20, 2010

ONE YEAR DOWN

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

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

Sunday, May 16, 2010

The Relay



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



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

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

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

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

Thursday, May 13, 2010

Tomorrow

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

SHUT UP LITTLE VOICE!!!

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

Saturday, May 8, 2010

Back to work Monday

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

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

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

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

Sunday, May 2, 2010

Onward

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

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

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

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

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

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

Saturday, May 1, 2010

Wow! Now I'm REALLY connected

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

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

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

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

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





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

Monday, April 26, 2010

So sue me.

I slept the day away..... again. But I VOW to be running around alike a headless chicken tomorrow. Lots to do this week. it goes a little something like this.
1. Call insurance company and ask where the hell my disability check is.
2. Call Columbus Oncologist about gracing him with my presence and the honor of treating this beauty.
3. Solicit more sponsor money for Relay for Life shirts to be made quickly.
4. Find a t-shirt printer to do it on the cheap.
5. get to my dad's house to sort through all the "other" stuff that we have in storage so I can get rid of most of it for a yard sale we're having here on Friday. (A Relay for Life fundraiser or I would say no go.
6. Turn in application forms for the girls to be "Little Miss Relay" contestants. A-hem... no makeup thank you very much.
7. Oh yeah- watch Lost and V tomorrow night.... yeah- so the list isn't chronological.
8. Schedule and get Vera to a 'Well Baby' checkup.
9. Get the 2 lawns cut.
10. Tons of laundry and rearranging furniture.

I'm sure there is more in there but I don't have my 'to do' list right in front of me.

All this planning for the Relay and other 'lifely' (not lively) things makes me think.
I see on TV where people given a crappy diagnosis go out and "Live life to the fullest." How on earth do you do that when you've got day to day responsibilities that are hard enough to take care of?

I will say that my sister and I are kinda planning something for Memorial Day weekend. We don't know what yet, but SOMETHING. Mommy guilt says I should spend that time with my girls. But I do have to do something for myself besides getting an eyebrow wax. (Add that to my list because these things are getting outta control)

We were thinking Tennessee, Chicago, New Orleans, New York or just good 'ol West Virginia whitewater rafting. Though it may be a little cold for me.

Any ideas? Gotta be affordable and all. But fun. You know- taking life by the whatevers.

Wednesday, April 21, 2010

Feeling my Oats

That sounds dirty, but I mean I've got a bit of energy today. I think it's the Claritin I took for the nasty cold I'm getting. I know- Claritin is for allergies, but it does wonders for me when I have a cold.
Heading to Columbus with my sister today for her Oncologist appointment. I guess she's having the total hysterectomy... her choice. Because the Onc said that for all intents and purposes- she's clear because the surgery got the tumor. But since she's got Lynch Syndrome too- her chances of uterine cancer are 40-60% and she doesn't want to risk it.
I count my blessings that I've got my girls. I feel bad that she will not have babies of her own. She will make a great adoptive mother though. She doesn't want to hear that (I don't think she even reads this blog) but I know she will.
I wouldn't trade my girls for "no cancer." I can't even imagine.
Even though this morning has been trying with the two of them this morning, I try to freeze frame every moment.
I would like a day off, however. Not from the girls- but from the mere KNOWLEDGE that I have cancer. Yeah, that'll happen.
Until they can perscribe me a pill for that, I'll just find creative ways to escape.... like watching "RuPauls Drag Race." :P

Sunday, April 18, 2010

Making my comeback.

On Blogspot, that is. I finally have internet in my new house and am connected again. So much to say when I think about it but when I log on to "talk"............. nothing.
Our Wheelchair Basketball Game was a bust. We made money- but just barely. Thanks to 2 $100 donations from kick-ass individuals. Otherwise it would not have been good. The game itself was VERY entertaining and I thank the Wheelers http://www.mariettawheelers.org/ for playing.... as well as the guys on our team. They lost, but played great.
It was disappointing that so few showed up for it. It was on TV, Radio, in the paper, on flyers around town. I kinda knew a majority of the people who said "Yeah, I'll try to be there" wouldn't be. My sister and I were comparing it to when we'd go whitewater rafting: SOOOO many people act pumped about it and say "Sure- that sounds awesome, let me know when you go!" And we give them ample time to plan. If everyone who said that ACTUALLY went, we'd fill buses to go. But it was always just Micki and me. That's okay for stuff like that- but I dunno that I will brave another 'depend on people to show up to make a profit' event again. I may stick to raffles and begging. It was too stressful for too little a payoff. At least if I DID do it again- I know not to expect too much.
"He who expects little won't be disappointed." Isn't that a famous quote? If not- it should be.
I'm still a little bummed about my prognosis. Got my staples out on Tuesday and talked to the surgeon. I like him alright- but it's kinda grating on my nerves that he doesn't give REAL answers. I know with my situation there aren't a lot of YES and NO answers about the future, but sheesh, throw me a bone. My Dad went with me to the appointment and asked "Is she progressing?"
And the response was "Well, there was a lot more cancer in there than I would like to have seen."
hmmmmm.
Uh, NOT promising. And that's definitely not a "YES" in any way, shape or form.

Blah.

Though I hope to get in on a clinical study that will make me lose my hair instead of gain weight dammit. I will be totally honest: I wanted to lose my hair. There, I said it. But I didn't want to be chubby AND bald so I guess that was a blessing in disguise. Maybe this time..... and I'll get a Tat on my noggin. Mom and Dad will love it.

Friday, April 9, 2010

2 days...

So I've kind of put together a fundraiser that happens Sunday... wishing I was more organized. It's a Wheelchair Basketball game. I thought I'd have more people to play- but at least I have 6 players. 2 at the last minute. I have NO idea how many will actually show up to watch... hoping I at least make a LITTLE bit of money for the Relay for Life. or I'll end up broke. At least I'll have a slew of hot dogs to make me feel better if that happens. blech! So much for that healthy diet- har har.

I still have zero energy. It is a task to just get out of bed or to avoid getting back in it when I've done what needs doing.
I want energy but............. nothing. Maybe tomorrow.

And I still miss my dog. :(

Monday, April 5, 2010

I'm back

Let me start by saying everything is fine- no complications since I got home, I just don't have internet access at the new house and I haven't been able to drive (drugs) and I really have just wanted to sleep.
I can't update from my phone (which is on the fritz).
So since I got home, I've felt a little better every day. Not great. But a little better. Still down about the crap results at the surgery. I can't say I'm excited at all about the idea of more chemo. Pisses me off.
So when I got home- my dog Whirlie Girl was still limping around due to her broken leg. I had my cousin who used to be a vet tech come a re-wrap her leg. Over the week after that evidently she got an infection. I couldn't tell what was wrong, plus there was so much to catch up on. By Saturday the smell in the basement was unbareable... I didn't realize a wound could SMELL like that. Because where she broke her leg was fine, it was below it where the infection set in. We took her to the E-Vet and the doc said she was probably too old for surgery and wouldn't do well as a tripod missing a front leg. Plus, the infection had probably already spread and she probably had something more going on for the infection to go that fast. We decided to put her down... you could tell she was in a LOT of pain. It sucked... she was a good dog, my first baby.


RIP Whirlie Girl- You were a good dog.


So I wait a little longer for my luck to turn around. I can still count the blessings I DO have... 2 beautiful, healthy girls to keep me going.

Thursday, March 25, 2010

Still Sore

Talked to the doc again today. Looks like I'll be heading home tomorrow if nothing sets me back. My insides got with the program tonight- had some Wendy's fries and watched Project Runway. It's been a good night.
I miss my girls terribly. I got some coloring book pages in the mail that Iris had done for me. Made me smile.
The doc says the chemo worked a bit but there is "still plenty of tumor in there that needs to go." So while the surgery went well- there is concern that the chemo isn't working fast enough to beat the cancer. It's working, but not fast enough. Doc said we may do another IPHP surgery in 6 months. whee.
I'm going to meet with the Oncologist here in Columbus about clinical trials, chemo and whatever else can be done. I had hoped to be finished with this crap for just a bit, but no joy. I guess I'll have to prove my endurance now. I'm gonna try to adopt a healthier diet and exercise when I recover- even if I'll just get knocked on my ass again soon. I gotta buckle down and commit and stick to it. Dammit.

But for now I say happy day that I will soon be home with my girlies.

New day.

The swelling lip finished it's reign. It's still puffy- but not like it was last night. I got some sleep actually. Bed around 1-ish and then woke up by rounding student doctors. They don't bother to knock, they just flip the light on as they come in. rude.
I'm very sore today, I think it's from the walking I did yesterday, hopefully the pain meds take care of it. I've been upped to thicker solids to get my GI tract with the program. I don't want to rush it- but I don't want to sit here for days on end either. So I'm chuggin' an Ensure right now... not bad. Tastes like pumped up Ovaltine.
I am looking forward to going home and hanging with the girls, sleeping, and getting stuff together for the Relay for Life. In that order.

Wednesday, March 24, 2010

LOL


Really! I'm seriously going to just laugh this one off. One side of my bottom lip just started swelling out of the blue. The swelling is making it's way around my lip. It's to the middle right about now.


Maybe I'll look like Angelina Jolie by morning. Oh- and I need to pluck my eyebrows... badly.
I DID want to say I didn't get an NG tube this time.. don't really know why. Hasn't been a problem though. Even better- so that's the silver lining.

A little better

And I mean that in the most miniscule way. The morphine wasn't cutting it so they upped me to dilaudid? Sleeping is near impossible. My back is killing me- my stomach is killing me and I'm stiff all over.
Now, for the details... They wouldn't do the hysterectomy because priority #1 was to treat the cancer I DO have.
Supposedly Dr Arnold removed 'numerous' pea sized nodules from my abdominal wall and my stomach. My other organs look good but he said it's more cancer than he'd have liked to see. I guess more chemo is in store for me... dammit. I guess I am also a candidate for esome clinical trials. bring 'em on.

Well, I am dreadfully exhausted so I'm signing off for now. More later.

Sunday, March 21, 2010

I used the best title for this post a while back.

I am in Columbus tonight- the night before "Go" Day. Today was a mess. I was doing laundry at the new house... we evidently have a clog somewhere. The downstairs was flooded after 2 loads of laundry.
THEN, as that got cleaned up- the husband was taking the dogs out and evidently one sat on the other's leg and probably broke it. This all just before I left the house for Columbus. Because you know I needed a few more things on my plate. Guess it's a good thing I won't be home to go shopping for groceries.

Anxious about tomorrow. Thinking about that damnedable NG tube.

Could be worse... could be raining.

Friday, March 19, 2010

Ramblin' on

Hmm. Where to start?
Well- first things first: We slept in the new house for the first time last night. I was exhausted but didn't sleep well at all. Racing mind and aching body. Bad combo for sleeping.
Once we actually got the girls to bed, they slept well. Iris LOVES the new house but said she missed the old one. Vera keeps wandering up and down the hall... looking around. I think she digs it too.
Gotta pack for the hospital stay. I leave Sunday to spend the night in Columbus so I can be there fresh and ready for Monday morning.
So I unpack for the new house to pack again for a hospital stay. I'll have to remember my bath and body works cucumber melon shower gel and lotion. The nurses on my recovery floor told me that they liked coming into my room because it smelled good. So maybe I got better service for it. :)
I loathe packing for hospital stays. I want to change every day- MY OWN clothes. I HATE hospital gowns. I also hate the idea of not being able to wash my damn hair for days. Packing 'do-rags.
Admittedly, I'm not looking forward to the next week. Second HIPEC (or IPHP) surgery and hysterectomy. I would just rather be in a drugged up haze so I don't remember it. I will miss the girls TERRIBLY. I don't know that anyone will bring them up to see me.
As far as work... well... someone is sitting in for me while I'm gone. I probably won't even have a job when all is said and done.
It's funny. I got diagnosed with cancer, had 2 surgeries and someone held a benefit for me... (Mind you- I've been at my job for almost 9 years now) No one called to see how I was doing and nevermind sending flowers at any time. And I saw ONE co worker at the benefit.
It is kinda sad. I got cards and well wishes from total strangers- but hardly a peep from the people I see 5 days a week. I must've worn out my welcome.
No matter. I found out who my friends are.

pfffffffffft!

So my sister and mom are going up to the hospital with me. I had my husband take yesterday and today off to move rather than Monday and Tuesday to be at the hospital with me. I'd rather him be home with the girls for some consistency at the new house. The first 2 days of surgery and recovery are a blur anyway.
i'm thinking I can talk my little brother into letting me have his laptop for the week so I can catch up on Project Runway and Lost and watch some movies and blog a bit. Some communication with the outside world does me good in the middle of the night between doses. :)

Stay tuned.

Wednesday, March 17, 2010

More good news.

I say that with every ounce of sarcasm I have in me. I got a call from the nurse yesterday tell me that I have a 2(ish)cm cyst on my thyroid but that TSH levels were fine. In the meantime- I am itchy, FAT, tired and have probably the nastiest dry skin I can imagine. hmmm.

I have also discovered that I am slowly breaking down. I think if I didn't have my girls that I would just have to throw in the towel. I don't know how much more bad news I can take and deal with.
It's not just the cyst. I feel like I'm failing at everything. I am not the mother I should be- I catch myself losing my cool too easily. I TRY- and in the back of my head I wish my husband would CALMLY take over and give me a break and maybe at least play 'good guy' but he doesn't. If he sees me getting upset- he gets mad too- which, in turn, puts me on the deffensive for the girls- because I can't stand to see someone get cross with them- even if it's him. They're my babies. So there is a constant frustration in me that will manifest in tears given the slightest opportunity.
I hate that I am on anti-anxiety medicine because of how HE makes me feel- not because of how the CANCER makes me feel. I'm frustrated at work because I feel worthless and know that there are at LEAST 2 people here that have discussed just how 'not useful' I am. I am a talker- that's why I got into radio, but I am afraid to talk anymore for fear that I'll say something stupid and be looked down upon. So my air time consists of "Yeah", "Ha ha" and "Awww." Riveting- right? There was a time here that I was gung ho about making these stations work great and I would do whatever was asked of me. I realized I was the only one. It wasn't working- so I joined the "I don't give a shit" club. But for some reason 'I' am the only one who gets the attention for it.
So I guess the happy pills are for work too.
I wish I could just whisk my girls away to the beautiful hills of Tuscany and live a semi-modern but simple life... cancer free, worry free, work free, financial troubles free.


I'm pissed at life right now.

Monday, March 15, 2010

Aching

I spent the weekend painting and it's still not done. I want to give a HUGE thanks to Sarah, Tina and Brenda for coming out of the blue to help- you gals kick ass! And thanks to my Dad for, uh, well, where do I start?!?! Thanks to my mother in law for working so hard, my mom for putting my kitchen in order, my stepdad for getting the laundry room taken care of, my little brothers Sean and Luke for the help and Luke's friend, Troy for all the hard work.
I am hell-bent on being in the new house by Friday night. I would like to at least spend 2 nights there with the girls before I'm whisked away to Columbus to have my next surgery. I will likely be there for at least a week. Yee-Haw! Before then I also have to go to work, get bills taken care of, get arrangements for sponsors and donations for the Relay For Life Team, get advertising taken care of for the fundraising wheelchair basketball game, get my disability insurance check on track and a thousand other things I'm sure.
My BIGGEST worry right now is my 3-1/2 year old. She's been acting up a bit lately. She's had a tantrum at least once a day for the last 4 days. I think the stresses that I'm dealing with are starting to take a toll on her. (Hang in there Iris- it will get better. I promise.) Night time is especially hard. I wish I could lay there with her and sleep next to her every night... I wish I could have both girls in bed with me every night- but let's be honest: I would never get any sleep with all the commotion.
It's such a transitional period right now- with the new house and emotionally. I've got to get used to constantly worrying about the cancer coming back, I have to get used to different prominent people in my life and get used to ones who were there not being there so much. My mind wanders and wishes and wants (and whines). You know what they say..."You can want in one hand and shit in the other and see which gets filled first." Such is life. I can only get that which I have control of... and I've found that I have control over VERY little.

Wednesday, March 10, 2010

I am busy...

But not too busy to blog I guess. :)

We closed on the house yesterday. So now the real stress begins: Selling our current house, painting the new one, then moving stuff, then painting the inside of the old house and MAKING someone buy it before we lose our shirts.

In the meantime- I have an ultrasound on my thyroid today (my doc said it looked swollen) could be nothing, could be hypothyroidism, could be... yep.. cancer. LOL- by this time next year I think the doc will say "Hmm, it looks like you've got a little Rachel in your cancer." har har.
HOWEVER: If it's hypothyroidism- it would explain why I'm still ridiculously tired all the time and FAT.
Whatev.
I digress.

Tonight I head to Columbus with my sister for her surgery. I guess her status is common knowledge now and I can talk about it since she told her co-workers and that even our old high school band director knows about it. She was diagnosed with cervical cancer in January. She has lynch syndrome too. Dunno if the 2 are related but Lynch is a son-of-a-bitch and is related to things adeno. That's the type of cervical cancer hers is- NOT related to HPV. Her type is rare too, accounting for about 5% of cervical cancer cases.
Like I said before- It's been a Stellar Year for the girls in my family. My cancer in May, My little sister's Type 1 Diabetes diagnosis (and near coma just before that) in August and then Micki's diagnosis. Needless to say, My Mom is TRYING to hold it together. I think she's doing better at it than I expected her to. Probably better than I would I'm sure. I'd be a mental wreck worrying about my girls.

So, we have P.L.E.N.T.Y. of 'walks' to participate in this summer... like Relay for Life for Micki and I. I came up with a witty name for the team "Sorelle Di Lotta" which means something to the effect of "Fighting Sisters" though I don't speak Italian- I took a risk. (SOMEONE will tell me it's all wrong... LOL) and NO, I'm not above soliciting donations- even here on my CANCER page. So- if you'd like to make a donation, it's WAY easy, just follow this link and the directions. Voila!

Rachel's Relay

Blah- if the link doesn't work- copy and paste this:
http://main.acsevents.org/site/TR/RelayForLife/RFLFY10OH?px=14179342&pg=personal&fr_id=23669

The link goes straight to my donation page so you shouldn't have to search for me. Every little bit helps reach my goal. Thanks in advance to anyone who gives. :)

Relay for Life is just the first walk to come up this year, then the Diabetes Walk and the Alzheimer's Walk this fall... but I will also be joining the March Of Dimes Walk. Gotta stay busy- and walking is good for ya, right?

Is there a hypothyroidism walk????


Cancer eats my shorts..... LOL for a Colon Cancer patient...

Saturday, March 6, 2010

Nothing is so bad that it can't get worse...

I get comments of "I don't know how you do it." I "do" it only how I can think to. No, not every day is a blast- and I have breakdowns and fits and all that other stuff you'd expect when basically every waking minute you know you've got cancer and that some huge clock with your name on it somewhere is ticking.
It's a heavy burden, but if you swim in it until your fingers get all pruny- you're not doing yourself any favors. I get mad that I got cancer at 33 (or at 23 if you look at when the tumor started developing) but I've had 34 good years now and I expect more. I really think the end of me would be to see one of my daughters go through something even remotely similar to what I'm going through. I'm reading a blog right now that is about as bad as I could imagine. http://www.laylagrace.org/

I really need to stay up on these things because for me- it puts everything in perspective: So Friggin what if we don't have money for Disneyland? I have my healthy kids... Big deal if someone spills popcorn on the floor, IT'S A FLOOR- It's washable! No problem when Vera wakes in the middle of the night for the ump-teenth time- She'll grow out of it, and it's another reason to cuddle her while she dozes off again. Snuggle "just 5 more minutes" (one of Iris's favorite sayings to get you to draw things out) with Iris after you read her the last book of the night... before long, she won't WANT you to read her a book at all!

Though it's kind of a double whammy. If I were 100% healthy- Little Layla Grayce's story would still wreck me. Knowing my time with my kids is limited- What unnerves me even more- the idea that my girls may endure something like what I'm going through... and won't have their mommy there for them.

Cancer Can Suck It.

**Sleep in peace little Layla. A flock of Angels sing you to your rest.**

Friday, March 5, 2010

Waiting some more.

Well, we have to wait until Tuesday to close on the house. Evidently Fannie Mae (who wanted us to close by March 5th) isn't ready yet. Figures. Though I don't know what the problem could be- they're not doing anything other than collecting my money.
I wanted to get started on the cleaning and painting this weekend because time is ticking away before my surgery- I won't be too useful for a while after that.
We did take the 'final walkthru' yesterday. My mom and sister came with. They hadn't seen the inside. I got their thumbs up on the place.

I met a doctor on Weds that is super nice. He wants to do my hysterectomy when I get my chemo surgery (shake and bake). Dr Arnold said he could do it, but seemed hesitant. Dr O'Malley is a gyn oncologist- and said that since I have Lynch Syndrome and since I'm good with the idea and actually pushing for it, he'd do it for me. He actually offered to do it. I didn't ask.
Supposedly Lynch Syndrome is an area of study at OSUMC. Very cool- now find a cure for my cancer. :)

Tuesday, March 2, 2010

The 'Word'

What's the Word?

My grandpa used to ask me that. Now no one does. At least they don't word it as such. I like asking that though, most people don't know how to reply.

As of right now- I've got the people in Marietta on my side for the total hysterectomy (yay?) so they're talking to my surgeon to see if it can happen with the IPHP. But the issue is: If I get that done- I will no longer make estrogen. Which may mean growing a moustache and my voice deepening... in addition to the hot flashes, osteoperosis and so on.
I COULD go on estrogen pills- but since there is a history of breast cancer in my family, they don't want to do that. I insist that I'd rather do the estrogen and get mammograms every year than NOT have estrogen.
My Grandmother is Italian... I already have to worry about a little darkness on my upper lip- I don't want to be rockin' a fu-manchu (or however you spell it) at any point in life.

Oh well.

On another note... we're closing on the house on Friday. Lots of work to do- lots of money to be spent in the next month. eeesh.

It will be worth it. I just think of all the room and openness of the new house. I'm feeling cramped in the old house. PLUS- instead of the whole house waking to Vera's little cries- the girls will be in seperate rooms! Ahhhh. A good night's sleep for SOMEBODY!

Surgery is still on for March 22nd. Bring it!

Monday, February 22, 2010

Tat's AMAZING!

Well, maybe not AMAZING, but I got it anyway! I'd been itching for another tattoo to celebrate the end of chemo. I've got one on file (for when I've got the $$) that's of an iris and a Christmas star. For Iris and Vera (Vera means 'light' and she's my December baby). I also have plans on a 'bracelet' tat with the girls' names.

I'm sure there are some reading this who don't like tats but I DO and I feel like there's so much being done to my body that I don't really have a choice about- so I though I'd get something done that I actually LIKE.

So here is a picture of the tat. Freshly done. (and with salve on it.. aaaah.)

Friday, February 19, 2010

Thank you Sir, May I have another?

Got my pap (sorry fellas) results yesterday. Squamous cells, abnormal results. Good times. I'm just going to start collecting different colored ribbons.
Though in a way, I'm glad it was abnormal because now I believe Dr. Arnold will be removing my baby factory equipment. After that point, I won't have to plan on getting the ribbons for endometrial, ovarian and uterine cancers. Whee!
Though it seems that every time I go to a different doc- I've got some neat suprise. I have a mammogram next week. Can't wait to see what will come of that. And I'll have to have them every year or so. SQUISH!

I also thought I'd get a Colon Cancer star ribbon tattoo...



I just MIGHT do that today. I thought the back of my neck would be alright, then I can get a different colored star for each different cancer I get underneath that. I would just have a string of stars down my spine by the time I'm 40.

I'm in a funky mood today. Right now is just limbo. Waiting on my mammogram appointment, waiting on Dr. Arnold's decision, Waiting on the nurse's line at my OBGYN's office to call me back, waiting on surgery, waiting on the underwriter to approve my home loan so I can actually get the house, waiting on my sister to go totally ape crap on my mom and aunt because of things they said, trying to plan a fundraiser for Relay for Life and waiting on other's decisions about location, waiting on Saturday so I can go get totally polluted with one of my best friends to forget about all the shit I'm waiting on.

Waiting sucks... but not as much as EFFIN' Cancer.

Tuesday, February 16, 2010

WTH?

Why is my page suddenly "off" ??? I can't seem to fix it either. grrr

Tuesday, February 9, 2010

And so






Took me 4 hours to make the 2 hour trip to Columbus- Evidently a car wreck was to blame. So I got to my CAT scan appointment 1:45 minutes late- but they got me in fast, then I headed to my Dr's office right after. The CAT scan evidently wasn't ready to be read (?)








IPHP Surgery is scheduled for March 22nd. I asked about a hysterectomy while having the IP but Dr Arnold is hesitant about it. Mostly because I'm only 34... but really- Having Lynch Syndrome predisposes you to Ovarian, Endometrial and Uterine Cancers. I think I have a 40% chance of getting Ovarian Cancer within my life so just take them out. Gut me like a fish. I have already come to terms with the fact that I won't be having any more children- whether I have "Mommy Equipment" or not. Of course if something DID come up- I would welcome another baby, but our plate is full right now and I'm thrilled to have 2 super great girlies at home and I want to enjoy them while I can. He said if I have an abnormal pap- he'll do the hysterectomy.

I talked to Dr Arnold's office yesterday about the CT scan results. Not GREAT, but not horrible though I guess. All is "Stable" but there is still "Residual" fluid in my abdomen and pelvis. Meaning mucous. Stuff the tumor produced and didn't get eliminated with the first Chemo surgery. So if they hadn't planned to do the second suregery before, they would definitely be doing it now. Whatever.
I went to my Gyno yesterday for the yearly "deed" and getting a mammogram on Feb 23. I have a weird feeling something will show up on that one. I think it's because even when I was 19- I thought I'd die one of 2 ways: Drowning or from Breast Cancer. hmmm. Hopefully if it's either, I will be OOOOLLLDDDD and grey.

Monday, February 8, 2010

That didn't last long.

I wish I was talking about the chemo side effects... but sadly, no, I'm not. My beautiful-but fragile- fingernails have disappeared.
Damn nerves. It's amazing what one evening can do to your hands. Arrgh! I guess there's no sense in crying about it. I can try again.

Not much to tell today except that it's a new week- CAT scan and Dr's appointment tomorrow... I'll have something to tell then. Good, Bad or Ugly. You all will be one of the "Next to know" simply because I can't update this blog from my phone. I will probably be blabbing away on the way home from Columbus to whoever is available to talk. Which, come to think of it, won't be too many people since most will be at work. Hmm.

Maybe Ill just stay in Columbus and talk to some random stranger.

Wednesday, February 3, 2010

....And it hits me

I KNEW it! The simple act of just waking up this morning sucked. Sweaty and having to juggle a fannypack and the tubes and the gauze on my chest not getting crap wet while I shower. Then the snots flow freely and I'm hacking and nauseous. Pain in the ass. At least THIS THING comes off today.


Only about 3 more hours... I think.

My throat is tight, my fingers are numb, my intestines are unruly and my hands are shaking like a crackhead's. Good times.

And to think.... amongst all this: I have managed to stop biting my fingernails. Dunno how I did it. Maybe I just forgot to.

I'm hoping I have the energy to keep up with the girls tonite since they've spent the last 2 nights with my Mother In Law... I feel like an ass for being childless just to sleep, but I think I needed it. Actually- I could easily go back to sleep right now.

I'm feeling a bit weepy today- I think it has to do with the watery eyes I get from the Flourauricil (or however the hell you spell it) that I carry around in this damn fannypack. Like seasonal allergies. So it's like I'm already halfway to crying, so my body and mind just figure I'm supposed to go full blown crying. Just what about? Cancer? Stress? Tiredness? Money? Being a bad Mom? Shit. Pick one or all.

I haven't CRIED today. But the day is young. I'm sure I will muster up the waterworks over SOMETHING!

SO LONG FANNYPACK!!! I might just cry with joy!

Tuesday, February 2, 2010

I'm feeling okay today. Nausea is at full blast, cold sensitivity sucks, but it could be worse. Spirits are up a bit. Still dreading the inevitable low that will likely come tomorrow.

I've got an appointment in Columbus in a week for a CT scan and an appointment with my surgeon to talk about surgery plans. I think I'm becoming okay with the idea of getting a total hysterectomy when I get my IPHP just to get it out of the way. It's sad that the mere idea of having another child won't even be an option, but I am 98% sure that we won't be having more children. I want to be able to give the children I have all the attention that I can. Though I had considered having a third right after having Vera, I want to be able to spend whatever time I've got with them living it to the max. Not that I wouldn't have love or time for a third, but you know what I mean.

I think I've got enough on my plate for now.

Got lotsa sleep in the last 24 hours... then back to work tomorrow... then listing my house and gathering loan paperwork and all that jazz. Hectic, but it will all be worth it once all is said and done. Hooray!

I do have a worry that I can't disclose just yet. Not about me, it worries me more than that. More stress in a different dimension. Sucks. I am a talker- I am an open book and it's hard to know what to do for someone who isn't like me because I can't wrap my head around the idea of not talking about things that worry you. :(

So, other than the obvious and the undiscloseable, I'm doing alright.

Cancer sucks.

Monday, February 1, 2010

I'm not calling it done just yet.

So Round 12 of 12 today. Though I've got the fannypack and a tube going into my chest I'm not officially done with chemo until this thing comes off around noon-ish on Wednesday. I FEEL okay right now. A bit of nasty fatigue, nausea and numb fingers are the worst of it at the moment. But I am prepping myself for the peak that usually happens around Wednesday/Thursday.
THEN I SO look forward to this month-and especially March 5th since The husband and I are closing on a house then! Most likely the week after, I will be undergoing the second of 2 IPHP chemo surgeries. Score for me- I won't be able to lift boxes or heavy furniture... so I guess I will just have to supervise. hee hee. I'm so stoked to get moved and get the girls in a proper house. it will definitely be a stretch to make 2 house payments until we sell the old one- but we'll tighten the belt and do it. There's always a way. It will also be nice to know the girls will be comfortable- in REAL rooms with REAL doors... and the dogs will probably be very happy to have a refuge from the girls when they get too crazy. :) When we get moved- I will post pictures... We may not be going to Disney World but we can make our own fun no problem where we'll be. So many possibilities!! The stress from making 2 house payments will be worth the weight of "I have to get the girls a better place to live." lifted off my shoulders.

Happy Today.

Monday, January 25, 2010

Horizons

Well, it's the last week before my last treatment. And a whole new angst has set in. In the midst of IV chemo treatments, it's easy to just think of (and dread) the upcoming # of rounds. Now, I wonder if all this has been effective or is a CT scan just gonna show that it did nothing. Hoping that scans are clear and that since my skin, teeth, gums, sanity, nerves, tastebuds, digestive system, mothering skills, wife skills, temper and emotions all suffered over the last 7 months- that those stupid cancer cells suffered more. DIE! DIE! DIE! Cancer Cells!!!!!!!!
I am not looking forward to the IPHP surgery but it's gotta be done, and I'll be on the other side of it soon enough. It's usually just a cloud when I'm in hospital. I'll be happy to have a room to myself if I can get one (gonna see what I can swing- since the nursing staff seemed to like me alright) and I'm hoping to have a laptop so I won't be TOTALLY bored in the middle of the night and I can blog away. Should be interesting- drugged up thoughts.

In the meantime, as a Public Service, I thought I'd mention a little tip for others with chemo side effects. I've found that drinking out of glass or plastic is MUCH better than any kind of metal. I had bought a metal water bottle with the intentions of drinking lotsa water... to me, it's simply foul out of that. And what sucks even more is that I don't know that I'll even use the bottle again even after side effects fade- it's more mental now. Guess I'll give it away or something.
Just recently- my gums have been sore/sensitive... and I know it's from the chemo, I just thought I'd escape THAT particular side effect. No such luck. It HURTS to brush my teeth, so I got an extra soft toothbrush. And to add to that- minty toothpaste kinda burns with the cold sensitivity- so I got smart and just started using my 3 year old's Dora Bubblegum flavored toothpaste. Voila! Better! Just a couple of 'solutions' if you will, for my problems. Maybe they'll work for you. Hopefully you don't even have to deal with stuff like that.

Thursday, January 21, 2010

SO Close!

As I approach the final round of chemo, it would be an understatement to say it will be a relief to be done with it. I was actually proud of myself for the past couple of days for not getting all weepy and emotional- focusing on the home searching/buying process... looking forward. Though that, in itself, can be depressing too. I look at the house and wonder if I'll be there to send my girls down the steps to the front door in their prom dresses... in their caps and gowns... or to help them pack up a car for college.
I try, for now, to focus on the now. But honestly- NOW- is hard too. I wonder if that will ever go away. Will I ever NOT wonder what I won't be here for? Once you hear "You've got Stage 4 Cancer and it's not cureable." You wither a bit. Oh yeah, you can be strong.... for stretches but it's virtually impossible to be Richard Simmons level of optimistic. :) (though I love him!)
I think what breaks me down the most isn't the idea of dying... I mean, everybody's THOUGHT about it at one point I'm sure, but it's a different twist when it's more of a reality. You want to get your affairs in order and make sure those you trust will follow through with your wishes. It's that I won't be around for all that I should be. I guess it's like not wanting to go to bed at night when you're a kid- you're SO afraid you're gonna miss something great!
Normally I'm a procrastinator- but I don't know that I have the luxury of time anymore. All research suggests that what I've got has an 18%-28% survival rate at 5 years after diagnosis... and I'm almost 1 year down already. Gotta be real. Not that I plan on just signing out at the 5 year mark, but let's be honest with ourselves.... anything past that mark is a gift. Tick-Tock.
So to put a spin on this less than sunny post- I sit here with the best of nausea, fatigue, stomach cramps, numb/sensitive fingers and allergy/watery eyes, but I know there is a good reason I'm putting up with these side effects. Eyes on the prize- and that prize is being able to be with my family and friends for as long as possible.
Plus, your lives would be so boring without me. I gotta keep you entertained. :)

Tuesday, January 19, 2010

Round 11.

No problems yeserday. Feeling tired and nauseous and the cold sensitivity is back- full blast. Oh well- one to go. One to go.
Feeling okay mentally. I hope it holds this time. I hate being weepy. blah.
Jason actually went with me yesterday. It was the first time he'd even seent he inside of the Strecker Center. I'm sure he was bored- there's not much to do but watch your loved one get pumped full of drugs. He brought plenty of books.
After all this is said and done, I get another CT scan (and will get one every 3 months for 2 yrs then every 6 months after that for the rest of my life.) and surgery and surgery and surgery. Could be worse I guess. I could just simply NOT be here to get the surgeries right?
Silver lining... siiiiilver lining.

Friday, January 15, 2010

WTF?!?!


You know, my medical situation is so 'effed up that even labs can't figure it out. There's signs that I have Lynch Syndrome which predisposes you to all kinds of fabulous cancers. (it only leaves out a couple) But the lab where they sent my blood sample couldn't get ANYTHING from my tests. INCONCLUSIVE. The dude from the lab called the Strecker (where I get my chemo and such) almost in tears because he's "Never seen anything like this before." (I've mentioned this in a WAY earlier post) Dr. Arnold said it may not be heriditary because there were no polyps anywhere else in my colon (TMI?) and if it IS heriditary- he's gonna just remove my entire colon. Guess that's probably just around the corner. Along with a total hysterectomy. not like I'm gonna use THOSE parts again.


Then there's the matter of what type of cancer this actually IS. I was told colon cancer in the beginning, then appendiceal cancer, then they're just calling it mucinious adenocarcinoma of the colon. All are on my paperwork at different points- because they can't figure me out.
I never really did ANY research on Lynch Syndrome when they said something about a DNA mutation. It never occured to me to do so. But as of lately, I've been researching a bit. And it's not good. It makes me cry to think I've probably passed this onto my girls and it pisses me off to think I'm gonna be battling this shit until one of us wins. What a mess.

Monday, January 11, 2010

Thinking Of Others

I am so glad I found this Blogosphere- It's allowed me to connect with others diagnosed with rare cancers... specifically appendix cancer. While I live in the Chemical Valley, I haven't been able to connect with someone in a relative situation to mine 'in person'.
But HERE- I've found (or others have found me) others in different stages, different treatment stages, of similar cancers and we are learning tools for each other. I found HOPE in a blog from someone with exactly the type and stage cancer I have, (http://appendix-cancer.blogspot.com/) after looking at the 'numbers' and seeing that making it 5 years past my diagnosis date would be next to a miracle- her blog and informative page made me think 'I can BEAT this and be another success story'.
I've also connected with others diagnosed mere months after me. Cheryl (http://appendix-cancer-sucks.blogspot.com/) found me only a few weeks after I started this blog- and recently Sheboygan Dan (http://www.oncoloblogy.com/) found me. Though I don't know ALL the specifics of others' situations, we exchange positive thoughts and sympathetic 'ears' when feeling like, well, poop.
I was thinking of Dan in particular today- he had the IPHP/HIPEC/Shake and Bake surgery on Friday and I'm keeping up with his updates. His family has been nice enough to update when he can't... he's busy healing!! I totally feel for him because I've been there (ugh and will be again) with the surgery at least. I was glad to be able to at least give him a little insight into what it would be like. Not knowing what to expect is probably one of the worst feelings to have- and to have that worry on top of the worries you already have when you've got cancer just sucks on toast. I'm hoping he has a speedy recovery and can update his blog soon. I thoroughly enjoy reading his posts!
Of course this is not meant to diminish anyone who has posted words of inspirtation or understanding- or anyone who simply reads this blog.
I was talking to my mother in law the other day- when I was feeling so low (Tunnel's End post) she suggested I find a support group for cancer patients/survivors. Though I'm SURE it's good for others- I just can't see myself doing well with a sit-down support group. I think I'd be a blubbery mess. And I DON'T like being like that. I mean, it's good to sit and vent but it would be me, me, me... waahhhh. I'm just not crazy about the idea. This blog is my support group. I get what I need to get off my chest and I don't actually MAKE anyone read this so no one is subjected to my rantings... they (you) read because you WANT to. And that fact does wonders for the self-esteem. So I thank you!

Friday, January 8, 2010

A better day....

So, I gave up the funk. What a difference a day makes.

I still feel like hammered dog poo, but the attitude is shifting. Like it always does on day five after chemo. If you notice my whiny posts are almost always between day 2-4 after a treatment. So effed up that drugs can do that. When I was in high school- the word "drugs" kinda meant something fun. Not now. I could be TOTALLY happy if I never had to even take a friggin' tylenol again. I punched out one of my pills today and literally heaved at the idea of taking it. Of course, I wretch at almost anything these days. My mouth tastes SO much like chemo- I think I could chew it. Yum! And not to mention that my breath probably smells like a chemistry lab.
There's simply NOT enough Orbit gum in the world.
Though I can see the next "Dirty Mouth?" commercial featuring - ME! Picture it: Sitting in the chemo chair, getting pumped full of all kinds of chemicals, then munching (you know, I'm throwing up in my mouth a little just typing this) on the "lunch" they bring you... nastyness... then smiling with a green cloud oozing from the corner of my mouth.
Then the perky little lady shows up. Ching! I make a Mint off the royalties. Right.

Thursday, January 7, 2010

Tunnel's End

Why is it when you're on a trip and have to pee, it gets more urgent the closer you get to home? Like you couldn't POSSIBLY hold it for another second? Well, my friends, I have to pee and I don't know that I can hold it anymore.

Reality: This Chemo is frustrating, painful, exhausting, infuriating and depressing and though I only have 2 more rounds to go, I wonder how much more I can tolerate. Of course I will finish the treatments and deal with it- but I can't help but think part of me is fading away. I can't pinpoint which part- but I am not the same person I was a year ago. I'd like to say I'm a stronger person, but I doubt that's true. I'm sick of being weepy, sad, manic-depressive. And I wouldn't blame anyone around me for avoiding me at all costs. Hell, I hate putting up with myself when I'm like this. It seems like something is chipping away at the person I was. I wouldn't have a problem with it if I didn't like myself before. But I DID! I spent 33 years perfecting my "Rachel-ness" dammit. Don't get me wrong, I'm not perfect by any means- I was just happy with who I was.

I am sincerely hoping that all this is temporary and with time I can be me again. It just can't happen soon enough.

Tuesday, January 5, 2010

Round 10 of 12

Yesterday went well! Only 2 more rounds to go... hopefully forever, but I won't hold my breath. instead of a 45 minute infusion (I think that's how long it normally was) the oxcilliaplatin infusion was more like 3 hours to avoid another allergic incident. I got a little red on the cheeks and chin and got an anxious feeling, like couldn't stop moving my legs- weird. I got a little "grey" too but it all passed. Rockin' the Fannypack today though. barf.

I was SO happy to have company- Amber came with me for treatment- I thought I'd bring someone along to bear witness in case I went into anaphalyctic shock again. You can't yell when your throat is closed off. LOL. cough,cough.


It was nice to have someone to talk to the whole time. I have text/phone chemo buddies, but face-to face time is great!


Today, I'm feeling the effects of the Oxcilla; Twitchy and feeling stupid. Crossing my fingers that I don't say something stupid on the air.... though that could increase the listening audience. hmmm. Rating, ratings. The cold sensitivity is back with a vengance- suck. I hate wearing gloves inside.
I also didn't feel like messing with washing my hair and getting the bandage on my chest wet so I am wearing a knit cap- one that was made by a volunteer and donated to the Strecker Center's Christmas tree of knit cap presents. Normally- I wouldn't take one, but there were so many and it was 3 days to Christmas. The lime green one jumped out at me. See my lazyness? Oh- and notice how watery and red my eyes are? No, that's not "Dreamy-eyed" That's allergies.... allergies I NEVER had before. ugh. 2 more rounds, 2 more rounds.
After the chemo is over, I will be scheduling my second IPHP / HIPEC /Shake and Bake surgery... whatever it's called depending on who you talk to. With THAT we will know if the last 6 months of chemo actually did any good. I hope, I hope. At least that's what my necklace says.
More later folks! Take it easy!