Wednesday, November 24, 2010


I go to Dallas on Monday. I'll be staying with a Navy buddy and his wife and then getting to my appointment on Tuesday. Then home on Wednesday. Hoping to meet up with a few more Navy Buds and other friends from Texas. Admittedly- I'm freaked out. There are 5 trials I'm elegible for- including the vaccine- but I have to have a prescheduled surgery. (And it has to be done in Dallas) Here's my brilliant idea.... since I still have cancer in my abdomen- and I know there is some on my ovaries that wasn't removed- I'll have a hysterectomy (that I wanted anyway) and they can get what they need then. They have to have 'fresh' cancer specimen to make the vaccine.
Sometimes I even scare myself.
But really- I want the vaccine. I will do the chemo clinical trials if that's all I CAN do, but I'm not cracked up about doing it. I LOATHE chemo. Here's a little insight for those of you who've never had chemo: God forbid you EVER have to do it... But I understand why an older person, who's lived a full life, would choose not to do chemo. I didn't before. "Why wouldn't you fight?" I thought. There is no description for how awful chemotherapy is. I honestly tear up at the mere idea of chemo. And I think if I didn't have 2 little girls that need their Mommy, that I might not do the chemo either. See- I'm not as strong as you people think I am. But thanks anyway.
So- please cross your fingers, pray, wish, whatever it is you do- that I can part-take in the vaccine.

In the meantime, I will enjoy this Thanksgiving. I have a lot to be thankful for. Last night, as I was reading bedtime stories to little Vera, it hit me that I was enjoying reading to her. Not pushing to make a memory, not stressed that these moments are precious and I might not have many of them. I was genuinely happy, content. After books, she wanted me to sing (or 'ning' as she says) She snuggled with me, she laid her head on my chest and didn't squirm, didn't try to get away. She was still awake- I could feel her pretty little eyelashes brush my skin every time she blinked. I was happy. Though I can be happy- it was like a free happy- like the kind I had before diagnosis. I am thankful that Iris is growing into a compassionate little girl with a heart the size of an ocean.
I am thankful that I am still here. So much can go wrong. I'm lucky to have had 5 surgeries in the last year and a half and I'm still here. Still able to function, I'm not down and out.
I credit my family and friends for that. I have shit days- but I am reminded that I am loved by the wonderful things my friends and family do and say. I don't think I could ask for more than that. Hell, my friend Karen is flying in from Missouri to spend Thanksgiving with me. My friend Jenny is at the grocery store- right now, in the cold- doing a bake sale to raise money for Christmas presents for my family. That's just the tip of the iceberg, things that are going on right now. There's been such an outpouring of generousity and care (online friends/readers included) that I don't even know where to start except to say thanks to everyone as a whole. I mean it.
So, tomorrow's holiday means a lot to me.
Thank you all.

Monday, November 22, 2010

Now we wait.

I told you all that I am headed to Dallas, Texas for some experimental stuff at the Mary Crowley Cancer Center. Well- I've mentioned it a few times since August-ish I think. Just last week there was a news report on just what they're doing in Dallas and hopefully what I will be participating in if all goes well.
Here is the article link if you're interested.
I say if you are a cancer patient and looking for that extra glimmer- look them up.
Right now I am waiting on a phone call from the doctor's office so we can schedule an appointment to get started. Hoping to be in Dallas by this time next week.
I've been hoping, praying for a home run in this fight. This seems like the only one left.
The wait will be worth it if it works.

More later...

Wednesday, November 17, 2010

Getting Into It.

This is what happens when I go back to work- I actually work. Hmm, I must work on that.
Well, here's the dirty: I am in the process of trying to get a hold of Dr. Nemunaitis in Dallas, TX. He does cancer research and lots of experimental, uh, stuff. He's rather hard to get in touch with but I will continue to call. I talked to him once before my attempted HIPEC. He said if things didn't go as planned to get back to him- and so I am.
I am also looking into Cancer Treatment Centers of America. Chicago looks like it will be the best bet.
I am also going to talk to a herbalist and am trying to find someone that knows SOMETHING about acupuncture but around HERE it's a needle in a haystack.
I keep looking.
I will NOT be doing any avastin treatments for now because if I need to have even a minor surgery it may have to be delayed because of the blood-thinning that avastin does. I hate to put off any treatment but I have to thing "long" short-term... or whatever the hell you would call it.

On another note- My sister put me, Jason and the girls in for a retreat sponsored by Inheritance of Hope and it looks like the 4 of us will be going to Disney theme parks in Florida in January. From what I know, everything is paid for and taken care of. They will have people to assist with child care and they will have workshops for the girls (well, maybe just Iris) to learn to cope. Though the workshops will be more like games to them. I kinda feel like we shouldn't go because I got to go to New York with the girls in August. Is there a limit on things like this? I feel like I'm being greedy. {Shrug}
We could never afford to take the girls to Disney otherwise- and I would give an arm (or my bellybutton if I had one) to see Iris' face when we walk in anyway. So glad I bought another camera.

As far as ME... I'm doing okay. Glad to be back to work. I get to think about the stuff that shouldn't be thought about anyway- It's all about the entertainment industry on one of my stations. I get to talk about "Heidi and Spencer got married AGAIN!!!!" Nothing like a little escape from real troubles, right? I'm still tired but running out of excuses. I won't be running any time soon... just walking for now. I don't look forward to the inevitable jiggle that will come with a full gallop. blech.
The girls make every day great. I dropped them off at my mom's house to spend the night this past weekend and missed them the minute I walked in the empty house. They continue to be my strength. My reason for getting up in the morning, my reason for putting up with the headache that is navigating the cancer treatment labryinth. My 2 true loves.

Friday, November 5, 2010

Long Day

So I am back from Baltimore, the 5 hour drive sucks royally.
I met with Dr. Sardi first- nothing much to say except for it doesn't look great. Prognosis is worse after debulking surgery if they don't remove all the visible cancer. And they didn't. there was a lot of cancer there and it was in places they just couldn't get to or get it off. At least he took out what he could. Sucky, right? It gets better. Just wait.
Right after meeting with Dr. Sardi, I went right over to Dr. Ledakis. Get used to that name because he's a surgical oncologist... and my new favorite person. He's a huge guy- I can't wait to get a "My Oncologist can beat up your Oncologist" because it would actually be true.
Dr. Ledakis was part of my team when I had the HIPEC (that wasn't HIPEC). He took the biopsies of my cncer and tested it against different chemotherapies to see what would be effective. There are actually a couple of routes to try: The typical colon cancer treatments and a treatment against a KRAS factor... don't ask me what the hell that is, I just know that if you don't have a KRAS mutation- the cancer is vulnerable to another chemical.
Guess what? My cancer is resistant to all of them. And I have a KRAS mutation. All bad.
What does that mean? There is nothing that will definitively kick this bitch. So I begin trial and error. Ledakis said we can do Avastin treatments which may hold off the growth... maybe- hell, we don't know.
Prognosis. Few, very few make it to 5 years. But less than 5 years is better than 1.
So I am really going to have to buckle down and just do every urban legend cure out there. It's hard to transform your household into the cancer fighting kitchen. ugh.

I am going to get a hold of the doctor in Dallas doing experimental stuff with cancer vaccines and such. Plus, I am going to look into whatever clinical trials I can.
Ledakis said that if after everything- nothing is working- we may go to an old school colon cancer treatment that he repeated MANY times was very toxic. That's a next-to-last resort.
I did ask the question I put here a while back, about having signet ring cell adenocarcinoma and since that is commonly an ovarian cancer too- that maybe try an ovarian cancer regimen against it (even though mine is colon/appendix). I asked an asshole doc at OSUMC about it and he just repeadedly said "But you don't have ovarian cancer- you have colon cancer." DUH- I KNOW, YOU JERK!!! I tried to explain to him I knew that and was just wondering if that had ever been tried. He just looked at me and treated me like I was an idiot.
Dr. Ledakis 'got' what I was asking and he said "We can try whatever you want- nothing is crazy."
I like him already.

So, mostly a shit day. I wanted some good news- but I think I knew what was coming.
CT scans are the next step and a lot of calling around before starting the Avastin, if that is actually what I do.

On a beautiful note- Dr. Ledakis commented on my previous surgeries at OSUMC... saying basically that he didn't understand why any doctor would do that surgery without debulking first. And to do it twice and talk about a possible third one? Ridiculous. I think Dr. Sardi got in touch with Dr. Arnold and hopefully gave him an earful. Maybe Dr. Arnold will refrain from doing that surgery on others and start sending them to get the surgery they SHOULD have.
Kisses, Dr. Arnold. I really hope you read this and educate yourself.

I'm in decent spirits. I would rather live forever... but I'm not dying tomorrow. So yay I guess.
I can't die too soon- I still have to find my DD214 and get it on file at the courthouse for a military rites funeral.
Getting ready to die is a pain in the ass... I'd just rather not do it at all. Problem solved.