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.


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...

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


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 ( 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
But Mommy guilt
keeps me.
What if I kick it
while I'm gone?
Who will recover my
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.