Now For The Next Chapter

A lot has happened in the last week or so. Honestly, I'm so cloudy that I have to reference my last post to remember what the heck I was talking about.
Now that I've done it, it's kind of a relief that I do remember snapping out of the funk. I even remember the moment- it was during a cheesy song in a yogurt commercial. Hm. Whatever it takes.
Thing is, the outlook is really no different than it was then so I don't know why I would feel any better mentally from one minute to the next but there ya go. So one minute I feel like I'm drowning 2 feet from the shore, the next I think- well hell, bring the shit that's next.
I have gradually gotten a bit of energy back each day. Saturday was FULL, I took the girls to a local festival... The Sweet Corn Festival. I'll give you a guess what it centered around. It's really geared to little kids. I picked up my younger sister, Eva to help me wrangle the girls because I just can't do it on my own. Too hot, and they have SO much energy.

Eva was a huge help, I couldn't have done it without her there. I got a little irked at a woman who sat across from us at the tables with her tween daughters while we had our sweet corn... she asks me if those are my kids- I said "These two are." pointing at Iris and Vera (I specified because Eva is almost 21 years younger than me and could easily be my kid). She giggled and said "Oh, I thought you were just sitting for them since they weren't listening to you very well."
Ummm, WTF? I didn't really know what to say. I was hurting and yeah, the girls were squirming and whining and not listening (it was naptime) and maybe I looked a little disconnected and struggling, but why would you feel the need to say that?
Thank you for pointing out that I am an insuffecient Mother. My girls will grow up to be true heathens. I'll go cry in my lemonade shake-up now.
Then a few minutes later she walked by me and put her hand on my shoulder and said something to the effect of "I wish you the best."
I don't even know how to take that. I couldn't figure out from the tone of her voice if she was being smart-assy or sincere. And I don't know which would piss me off more.
Uggggh. Shrug it off, shrug it off. People say stupid shit every day. Unprovoked. Without knowing the full story.
I'm sure I've been guilty of it too.

After teh festival we went straight to my husband's cousin's kid's birthday party (you still with me?). It was a mini-golf party for the little kids. I was sore but I wanted to be there.
We got home kinda early and my sister came over to help me put the girls in bed since the husband was at his brother's cookout.

Needless to say, I was pretty worthless on Sunday.

Monday Mom drove me to Canton once again for the next chapter/battle in the whole cancer mess. I started a clinincal trial and a new chemo. Dr. Gabrail (the new oncologist) did the KRAS testing that I thought was done in September and got a different result. So I guess I'm KRAS-Wild type. Which supposedly is a good thing because it could be potentially vulnerable to other drugs. So, yay I guess.
I did the chemo and the pills for the trial and Mom drove me home. I will be doing the chemo every other Monday "until it doesn't work anymore."
And then Dr. Gabrail said we will try the ovarian chemo.

In the meantime, I'm getting another port put in on this upcoming Monday. Can't say I'm excited but what's another scar? And someone will be with me for this one just in case you wondered.

I think we're gonna try to get to the Columbus Zoo on Saturday since it seems the Summer is almost over and I all but swore that I was going to take the girls. Plus, I can rent a Hover-round and roll, Rock-Star Style. My Sister, Micki and my Mom will probably be going with.. girls' day out. The husband will probably stay back to take care of my Dad's properties... they need mowed and someone's gotta do it.
So here's to hoping it isn't too hot because the animals never come out when it is.

I'll try to update more often- maybe from the hotel before the surgery or while I'm not doing a thing.... that happens a lot.

On To The Next "Hope"

I start a new clinical trial on Monday. This one is a pill and a double-blind study. So I may not even GET the drug.
Let's not kid ourselves here. I don't like the phrase "Giving up" because I'm certainly not doing that. I'm waiting to hear back from the herbalist/guru and I am doing all that I can. I HAVE BEEN doing all that I can. I feel like I'm sliding down a cliff, grasping on to little roots and plants sticking out- tearing up my hands trying to hang on to rock ledges that are just enough for my fingers to grab. Yeah, you can hang there for a minute- but it's inevitable, you're going to keep slipping and falling until you have a REAL ledge to stand on.
I can't get enough sleep. The girls get up in the morning and I referee from the bedroom. Some GREAT memories they'll have of me, huh?
Luckily, they are at my mother in law's tonight, I am hoping that when I get up in the morning- I'll have SOMETHING that resembles energy. Maybe I need someone to come to my house and tell me to get the hell out of bed and get out of the house. But even when I'm out, I am sleepy. I can fall asleep in the waiting room... oh, and I talk in my sleep... no really. I can close my eyes for about 2 minutes and talk in my sleep to my dream. I even catch myself reaching for the stuff that might be handed to me in the dream.

I now have 2 lumps in my left breast and I'm finding little lumps all over. That- paired with the weight loss and general discomfort and lack of good news suggests the worst. So how the hell do I stay positive?

I have plans with the girls this month. I'm trying people, I'm trying.

Somebody tell me something good. And don't say "You have your kids" because at this point, that is the only thing keeping me sane. I need to hear something I don't know. I figure you'll come up empty handed.

Gotta Get Better Than This

I've been pretty much doing nothing since I last updated- there wasn't much to tell so I didn't want to bore you with "wahhhh."
Tomorrow I go to Canton- somewhere in Canton. I have to find it. They were supposed to send me information via e-mail but nothing. eh, we'll see.
My Mom is going with me so no worries about me going by myself.
This trial is evident a double-blind study where you're given on drug for sure and maybe the other drug with it. I haven't had either so fingers crossed that it will produce something good. I'm running out of happy juice. I believe the people around me are running out too if they haven't run out already. There has got to be a point where good news is genuine. Something promising, anything.
When my husband, who NEVER gets into deep talks, brings up the idea of me planning my funeral (for real) I know that the people around me are worried. He said he thinks that if something doesn't change soon that he doesn't see me around much longer. I honestly think the same thing too- I just don't say it out loud. I know it's upsetting to talk about and even to avoid. Some do a great job of not showing it- others, not so much. But it's come to the point where I now know that everyone is scared for me. Last time I weighed in at a Doctor's office, I was 138lbs. I haven't seen the 130's since I was 19.
And when you drop almost 60lbs this fast and don't have muscles and a flat belly and a Bowflex in your living room to show for it, it must be worrysome. I look awful. My legs are skinny, my neck is waddly and my eyes are dark. I finally look like a cancer patient I guess. Not that I wanted to be here- but that's it.
With spots in my lungs and a lump in my breast- there's too much evidence that I'm losing. I've looked up Peritoneal Carcinomatosis, signet ring cell adenocarcinoma, PMP and other stuff- it suggests this cancer RARELY moves out of the abdomen. But mine did. Go fucking figure. I beat the odds in all the wrong ways. How about beating the shitty odds given me about 5 year survival? Why can't I be THAT kind of statistic?

Well, here's to another Hope. And to hoping that this vaccine decides to start working ASAP.

Was That Necessary?

As I think of the BIG scheme of things- no. Getting a tumor removed from my chest wasn’t necessary and neither were the little tumors on my arms. But Na-na-na, Boo-boo stick your head in Doo-Doo I got them removed and I feel mentally much better.
Dr. Kuhn worked me in on Thursday. He saw the tumor and said it had to go because he could see how miserable it would make someone. He’s so great. I’d travel to Texas for any surgery as long as he was doing it. I don’t know that I trust any other surgeon. I mean- Sardi would be a close second then I would let the doctor at Tufts in Boston (and I don’t even know him- I just got a good vibe from him.
I will NEVER let Dr. Arnold touch me again. I don’t even want to SEE him again because I feel like I should have something ready Maybe just make him look at my wrecked, disgusting body and tell him that he started it all. And a lot of the mess ups were from not knowing that my cancer was Appendix and not knowing is was Peritoneal Carcinomatosis until a year later. That’s a HUGE problem. If you don’t get a correct diagnosis- how are you supposed to get the right treatment?
Grrr. Anyway- After the surgery I was HURTING!!! I guess the pain is starting to get to me. And they had the fluids going so fast that I had to pee every 30 minutes... and I couldn’t get out of bed yet so I had to wait for the nurse to get there with the bedpan.
The last time I called for a nurse- she took too long so I had to get out of bed and get to the bathroom. Every part of that was a chore. But I made it... just in time.
The nurses were great- lots of personality and didn’t mind me asking them over and over for the bedpan or for meds or for them to tuck the pillow in my back so I could sleep. So, kudos to them. Good Surgeon and Good Nursing Staff.
Somehow on the flight home the next day I ended up in first class. With a window seat even. Nice. Mom and my little brother came to get me since I drove myself to the airport. I slept most of the way home and got a sweet greeting from Iris when I got home. I love hugs. I love m girls and they are the reason I do all of this. I know I’ve said it many times, but I’ll say it again... I couldn’t go through all of this if I didn’t have them to live for. It certainly doesn’t mean I will win in the end, but I fight harder.

My friend, Kristi, lost her battle with pancreatic cancer today. I just found out via Facebook. She had 2 young children- Michael, 4 and Julianna, 2 and a great husband, Mike. My husband and I had an almost instant bond with them at the Inheritance of Hope Retreat at Disney in January. Our stories were similar and Jason and Mike really bonded... I think it’s tough for guys to address their feelings unless they find someone who’s almost in their shoes- and Jason and Mike seemed to be wearing the same pair.
I hate this disease. Not just for me, but for all the other warriors, family of warriors and anyone who cares about someone who’s fought it.
It’s hard to find a silver lining tonight. I wish I could do it but I am just not in the mood. I will squeeze my babies a little tighter, knowing there are 2 more babies out there who don’t have a Mommy to squeeze now.