Rarin' to go

I signed all the consent forms to begin XL 184. Now I'm just waiting for coordination between all my "ologists" to get things going. My blood thinning drug still has to be decided upon- it will be an injectable. I'm not happy about that, but will suck it up for awhile so I can do the clinical trial. If everything goes well, then I'm looking at the first week of January to get started.

I think I'm getting a handle on my meds. I've adjusted to my round the clock narcotics in that I can function on them. I still have break thru pain but handle that with Dilaudid. My bladder problems are getting better it seems- I'm not getting up 3 or 4 times a night to pee. But that could also be attributed to the sleeping pill (Ambien) and the addition of Elavil to make it last longer. I'm actually sleeping a bit now. My bowel problems are still there. I'm waiting to get hooked up with a GI doc for a colonoscopy to see how far up the blockage is. 

I know I've had a lot of negative posts and thoughts lately. I'm sorry. My whole life isn't one big stormy cloud- I do actually experience great moments of joy. I got to keep my grandbaby for a few days last week. We had a Disney Princess movie marathon (my mom has ALL of them), with some Alvin and the Chick-mumps (Emmy's word) thrown in. We had a wonderful time together and luckily, I didn't have to go to the hospital for anything. Thank God for small favors.

The holidays used to make me so sad! When I lived in Chicago, I'd get all weepy around Christmas because I couldn't be with my family in Arizona. Now I'm back in Arizona and actually LIVE with my family, but now my kids aren't here for Christmas. My Boyo just flew out to Chicago to see daddy dearest, and my girl plans on staying home in Flagstaff to try to establish her own Christmas traditions with Em. I could go up there,  but I can't leave my mom home alone at Christmas, and she doesn't want to go. This will be my first Christmas back at home with my mom, so I want to make that special for her. I'll figure it out. I want to take a trip to California for New Year's and spend some time with my Other Brother. I haven't seen him in a few years. If I can swing it, I'm going.

I hope I start getting phone calls from all my docs soon. I want to get this show on the road.

Peace.

The struggle to appear normal

I am worn out. I know I am neglecting some of those who love me and want my attention, and I'm sorry I'm not available or too tired. But I am so wrapped up in trying to save my life that I have little time for anything else. I can't do all the stuff I want to do. Yesterday I had 3 events I wanted to do: a thing at TWC, my high school reunion, and a friend performing at a comedy club. Back in my Other Life, I would've been able to hit all 3 but now I could only pick one to give it my full presence. I picked the reunion. I had the BEST time! I'm so glad I went. I ate an apple, a salad, had 3 beers and 4 peanuts. Vegan all the way, baby! LOL

I really struggle to appear "normal". To look at me you wouldn't know I was sick at all. Guess I've gotten really good at faking it but I am in pain all of the time. I don't move as quick as I used to. Shit, I can't do most ANYTHING like I used to. I'm back to frequent doctor appointments and tests. My money situation sucks. Insurance doesn't pay for naturopathic doctors or treatments so it's all out of pocket. My kid doesn't hate me anymore but is still not happy living here at Grandma's house. I don't blame him. I wish we lived back at our house, too.

There are many many good things in my life. I have my friends, my family, my support group, new docs, a new church, my blogger buddies, my dog, I'm breathing, I have a Plan, and the sun is gonna come up tomorrow. Here's to another week of sucking it up and moving on.

What's that game called?

You know- the one where you tell one person something, then they tell another person, who tells another, who tells another, and so on...

My brother called me today and said "I heard it through the grapevine, and now I just want to hear it from you. Do you have a banana in your colon?" Of course I screeched for my mom (because she tends to mix things up a little sometimes, and my new tumor IS kinda banana-shaped) and asked her "DID YOU TELL FRANK I HAD A BANANA IN MY COLON???"

With a totally straight face she said "Is that like a tater in your tailpipe?" God, I love my family.

Meanwhile, back at the ranch...

My extended vacation seems like I dreamed it. If I didn't have pictures and souvenirs I'd really have to wonder, because my memory is shot. I know I had fun, though!

You can escape life once in awhile, but it always catches up with you. I spent 19 days gleefully running in the cornfields of the Midwest getting my Zen on, and just absorbing friends and life and summer and freedom. Then I come home and all the world's problems (mine) are still there. I wasn't back 3 days before I was having chest pain again, anxiety attacks, and a lot of anger and stress. It's not easy living with an alcoholic and a 14 year old boy. Sage advice was to remove the stressors from my life. Can't get rid of the kid, but the man is definitely out. We have some irreconcilable differences and, based on our history, I don't trust him to take care of me if I get sick again. And he loves Bacardi much more than me.

I've had to make a lot of hard decisions. I'm unemployed and on disability now, so my finances aren't great. If I get sick again, I need to be somewhere I KNOW I'll be taken care of, and where my kid will be safe and looked after. I decided to move back to my mom's house in Phoenix. She's got room for us (and my dog), and it'll be a good thing. An adjustment, of course, but we'll make it work. My kid hates me, of course. He just started high school last week and doesn't want to be away from his friends. I totally understand that, and plan on keeping him at the school he's at, for this year, at least. He knows there are a few circumstances where I'd have to transfer him to a school closer to Mom's house.

It's gonna be a busy month; packing, sorting, weeding, downsizing, finding storage, cleaning, and moving. My heart aches for letting my dude go, but I know it's for the best. My path has just taken a sharp turn from his.

As far as my cancer goes, I'm in a holding pattern. Nothing zappable showed up on the scans last month so we wait. I had my barium swallow test to check out my throat. I am happy to say that there were no tumors, but I do have esophageal spasms and reflux now, apparently caused by chemo. Thanks a lot, chemo! You're the gift that just keeps on giving! Like herpes!

I still have chemo brain, chronic tinnitus, a sharp, stabbing pain close to my incision site (nerve damage, I'm almost positive), insomnia, and the attention span of a Labrador. But I'm alive, my eyebrows are almost back, and I have a great tan. (ha) I'm just trying to deal. One day at a time.