Monday, August 31, 2009

Just wanted to say....

Thanks to all who follow the blog. It's mostly just a re-hash of what I put on Facebook, but I never think to check the comments section. I seriously JUST read the comments and want to say thanks to everyone who leaves any at all. It is nice to know I've got a cheering section.

Keeping a sense of humor is not always easy- but I think it's a.b.s.o.l.u.t.e.l.y. necessary. When the inside gets dark- keeping it light on the outside seems to seep inward. Sometimes it gets VERY dark... and to tell the truth, I want to beat this and will if it's possible, but in all reality (I can say this here because I have no relatives following this blog) the outlook isn't so great. Survival rates for the few who have been followed- suck. This is stage four cancer, not two or three. And this cancer is so rare that drug companies don't do any drug testing or research for it because it's not cost effective. This is not a popular cancer so it's abandoned and treated like a general colon cancer in the hopes that it does the trick.
I'm an optimist.... but I'm no dummy. The odds are stacked against me. I used to picture having grandchildren or touring Europe after my girls have gone to college. That is all faded. I try to live for the now. I soak up every silly thing Iris says or does, I cherish every smile I get out of Vera, I am only a little iritated when I have to get up with one or the other in the middle of the night, I stand in the doorways of their rooms and want to bawl because I am so afraid that I will be nothing but pictures in an album to them because they won't remember me. I'm afraid that they will simply refer to me as "Rachel" because they can't recall calling me "Mommy."

Iris has a hard time grasping what's going on. She knows there is something amiss, and knows that I go to the doctor a lot and that the hospital is where mommy gets better. May was bad, she and Vera were both shuffled around as I was stuck in a friggin' hospital bed- totally at the mercy of fate. Now Iris gets seperation anxiety before I leave her even just for an hour or so. I tell her "Mommy always comes back" so she knows I'm not leaving her forever. And hopefully when the day comes that I do leave her forever, she'll be old enough to understand. I know I'm not dying from cancer tomorrow or even in 6 months, but Father Time has me in a stranglehold. I've got an overwhelming sense of urgency to get my affairs in order, to get into a "real house" ASAP (I've been wanting to move for over a year) and to make sure those around me know my wishes. There is so much I want to do and see before leaving and there just aren't enough resources to do them, and even if I had the resources to do those things- would I? It is a wicked trade-off to go do something greedy when I could be spending that precious time with my daughters.
I guess I've got a lot of guilt. (yes, I do go to counseling) My sister tells me to let it go- but she's not a mom. I feel guilty because I've put everyone on edge, possibly making my 3 year old nuerotic because she's SO concerned ANY time she hears of someone being sick, I've had to shuffle my girls off NUMEROUS times to get treatment, to recover from treatment, to just sleep and so on, I've imposed on others to watch the girls, those other people in the meantime are sick with worry about me and it goes on and on.
What a mess.


I guess with the Comedy comes the Tragedy. It happens. Now I'm good for a few days. Thanks for "listening."

Sunday, August 30, 2009

..and so the story goes...

It's been an eventful week, (in no particular order) signing up Iris for preschool (starts on Tues!!) watching Belpre lose it's pants to Warren, going to a friend's birthday party/mock funeral ( :-O), getting chemo and taking my sister for her colonoscopy. The doc found two polyps during the colonoscopy and removed them- they were benign- HOORAY! I was honestly terrified for her- Things haven't been going well for the females in my family this summer. Now, if I can just get my SIXTY YEAR OLD FATHER to get his colonoscopy since he's never had one and is 10 years past due! (If you know him- give him grief about it) Actually, to think about it- i can think of a couple of cousins (Amy and Jimmy) who should get their colons on the big screen too. (I MEAN IT)Hey- Colonoscopies for EVERYONE!!!! Do it for fun!I am on the upswing from my last round of chemo- and GLAD of it. how irritating it is to not be able to drink anything cold. grrr. And THAT is just the small annoyance if it.

I won't be doing IV chemo until October because I'm waiting for the IPHP/Surgical Chemo. Yippeee... i KNOW you can fel my excitement. Ahhh- the pleasures of a catheder AND an NG tube. If only I could make the feeling last forever. A necessary evil I know. I might as well be out with it- I will probably have to have a total hysterectomy in the near future because the "seeding" of the cancer has landed on my "mommy parts" and taken up residence. It's also take up residence in MANY other places- the doc is scheduling 4 hours for the surgery. It's going to be like pulling weeds I guess... hunt, cut, hunt, cut, hunt, cut and so on until all the little cancer nodules are properly "plucked." After that is the scraping of my liver to get the nasties off the surface, and then a GOOOOOOOD washin' down. I wonder if I'll feel Lemony Fresh after the whole thing? or will I be too drugged up to notice. I totally vote "Too drugged up to notice."

You know- the first couple of times in the hospital I was a little sheepsh when asking for the hard drugs for pain because I didn't want anyone thinking I was a druggie- now- I simply don't care. They're not going to give me more than I'm allowed and it's for actual, legitimate PAIN. So BRING IT ON!!! It's not a contest to see who can take the most pain. Nobody gets a stinkin' medal because they didn't take ALL pain meds they were allowed and "sucked it up." Anyway-

I'm looking forward to a couple of weeks without the chemo and it's side effects- although, I'd rather just do it and have it done than add another month on to when the treatment will be over. We're looking at February now instead of January. Nothing says "Happy Valentines Day" like intestinal distress, nausea and fatigue.

Saturday, August 22, 2009

Prognosis: Unknown

I have a date!!!!Okay, okay so it's with a doctor and he's going to be cutting me open. September 18 is "go day" for the IPHP chemo surgery. Doc Arnold will be debulking the little tumors that are plaguing my abdomen still. then he's going to give my insides a gooooooooood scrub down with some super-heated chemotherapy. sounds like fun!!! You KNOW you wanna do it!

Anyway- Round 3 is Monday. I finally got a chance to sit with the Nurse Practitioner and ask some REAL questions.... you know- the ones that you can't ask when family is around because they don't want me thinking the worst. I don't think the worst- but I DO want to know what to be ready for. Officially though- there is no prognosis because this cancer is so rare that there is NO accurate information on survival rates. Since it IS Stage 4- it's not cureable, but we can kick it's ass into remission and that's what I'm hoping for. Every piece of information about my situation online says "very poor" prognosis... but I will be the poster girl for surviving Signet Ring Cell Adenocarcinoma. To hell with the naysayers. If I have to do a thousand surgeries- so be it.

As far as how I am feeling... I won't say I'm great because it simply isn't true. I'm okay. There are a few nasty side effects but it gets better about day 8.We'll know with this surgery if things are looking better or worse or the same and re-evaluate from there. The great thing is- I've got Doctors who are aggressive with treatment and friends and family who will be right there fighting with me.

Sunday, August 9, 2009

Round 2 Tomorrow

I go for another round of chemo tomorrow. Hoping this time it goes a little smoother. It's really just boring. And I'm gonna have to have a little chat with the old lady that takes forever in the bathroom (an seems to have the same "schedule" I do) because there i only one women's toilet right there and when this chick needs to go- SHE NEEDS TO GO!!
I have also learned my lesson aobut watching Kathy Lee Gifford and Hota or whatever her name is... I will only watch it for the train wreck that it is... and critique accordingly.
My hair is thinning.. at least it's falling out a lot. I cut it shorter because it was just EVERYWHERE!!! In my daughter's hands, on the couch, in the drain, in my FOOD- ACK!!!! I figure I will be shaving the noggin soon... maybe within the month. All in all everything is okay. I thing I am getting "used" to the idea of having cancer... but will never understand how those around me feel. Because it sounds weird, but I know how much I like people.. you know? Certain people... you like them alot and care about them and would do anything for them... I sincerely just never thought anyone (except for my family) felt that way about me. It sounds kind of dumb because I know I feel that way about other people, so why wouldn't someone feel that way about me? I dunno. I really just kind of saw myself as a "Toadie" or a Jane Schmoe that no one really gave much thought to after the end of a conversation. I still feel that way. That's why I am always amazed to know how much others have done for me- Like Amber and the Crew... and to see people friend me... especially ones that aren't in "the know" about my situation. I'm always giddy when someone says they were looking for me online. I feel like Sally Field.... not as in Sybil... but as in "You like me, you really like me!!!!"
I'm plotting my comeback already... while I take a breather. My "pay-it-forward" is in it's infant stages right now but I'm working on it.

Yesterday we had Iris' 3rd birthday party though her actually birth DAY is Aug 14. A Yo Gabba Gabba theme. Her cake ROCKED!! My friend Amy made it.

Sunday, August 2, 2009

I never knew

I had so many friends.

The benefit last night was crazy! Crazy Fun that is. Amber (Little) Guthrie was the ringleader of the whole thing. She was amazing! She put so much work into it that it HAD to be a success. I really don't know if there are stronger, more appropriate words than THANK YOU for all she's done- and for all the work, time, money and effort others put into the whole thing.
It blows me away that so many that I went to elementary school with came out to help... people I haven't seen in at least 15 years or people I see in passing once a year or so come out of the woodwork to help. I will forever be paying forward all the good deeds afforded me. I so hope I am the person that everyone believes deserved such kindness.
Why is it that cancer is easier for me to accept than charity? I think it's because I don't feel worthy of all the kindness. I don't feel like I've made that much of a mark on anything, let alone anyone other than my children I guess. I always just figured myself a regular "Jane" just getting by. But last night it hit home... or just slapped me in the face. One person said "We all grew up together- we're like brothers and sisters. We just haven't seen each other for a long time." And my heart just melted. I'd ALWAYS felt that way- I just really didn't think anyone else did- or felt that way about me at least.
It is easy for me to hold back tears of pain, but tears of gratitude seem to flow like the Amazon. I just can't say Thank You enough.
I want to thank everyone individually- but I would surely leave someone out and I would feel terrible if I did. Let's just say- you know who you are.
Thank you all so very much. It means the world to me that you think I am so deserving. I will do everything in my power to pass it on forever.