Our Life In The Desert

Have you missed me at all?

2012-01-12T04:25:26Z

I’m not coming back here. It’s no longer “Our Life” and we aren’t in the “Desert” — but I am working on the acquisition on a new home for me, so I can write and lament and cause trouble.

I’m doing well. I really am.

I’ve met someone. We’re working thru the bumps, but overall, it’s going really well.

He put a ring on it in December.

Texas has been the salve I needed to heal from 11 years of emotional abuse — or at least start to heal — but it’s time to move on. The new beau, his name is Jimmy, is from Mississippi and we’re making plans to head out that way in a month or so and set up housekeeping on some land he has there.

It’s a new adventure and I’m game.

Anyway — I’m doing well. I know some of you have wondered and I am happy to report, I got over it. I got over him. I was able to move past it and I was able to find myself.

I’ll be sure and post again once I’ve finalized my new ‘home’ on the web.

Taking a blogging break — at least from here

2011-08-21T22:07:09Z

Heya everyone.

Thank you all so much for your emails, cards, tweets and IM’s — they mean the world to me.

I’m doing okay. Really. But — because of everything that is going on, I feel that it’s necessary that I take a sabbatical from writing here on the blog. Unfortunately, even the protected posts I write aren’t really ‘safe’ and I need ‘safe’ right now.

So — watch for updates from me regarding current events, my health and random thoughts via Facebook. If you’re not a friend, please feel free to send a request.

Thanks again for all your awesomeness. You have all done so much to lift me up and keep me positive and focused. I <3 you!

They were right, cancer does suck…

2011-08-07T22:32:19Z

I haven’t really talked about it much, because it’s just been overwhelming with everything else going on. Apparently, the cancer I talked about in a previous protected post is pretty freakin serious and serious scares the crap out of me.

I’ve done some research — the outlook, at least according to the sites I read, is pretty bleak. But I’m gonna fight, of course.

I’m taking a medication that makes me shake a lot — but that it’s it sole purpose — it’s also supposed to help reduce the size of the tumors I have on my liver, so that when surgery takes place, the chances of getting it all is increased.

In addition to the medication I’m taking — there is also talk of targeted (or direct, I can’t recall the word) radiation. This possibility actually scares me a lot. This impacts everyone around me and most importantly, it impacts Jerrett in a huge way.

But then again, so does not having treatment — so when things are more set in stone, I’ll have a sit down with him and we’ll talk about the options and see what he thinks.

Overall — this is just…overwhelming. I try not to cry, but I do. A lot. I am trying to ‘get my affairs in order’ as a good friend, Teresa, suggested — but that’s proven to be damn near impossible due to other circumstances.

So…bleh.

A few friends have said they don’t know how to react or respond to me — so I’d like to go ahead and put it out there: Right now, emotionally, I’m trying to ignore the elephant in the room, so please just treat me like you would if I weren’t ill. I want to have fun, do things and go places — that hasn’t changed, yet.

I just kind of felt like writing…

2011-08-05T02:13:52Z

I’ve been sitting here for like 10 minutes trying to decide what to title this post. Then I just decided to start writing and I figured, eventually, it would come to me. It’s probably going to be a list post, because it seems to make more sense considering I’ll be touching on a wide-range of topics.

I finally went to California and got all of my stuff. Somehow, Teresa (an awesome friend of mine from high school that went with me) and I managed to play a mad game of Human Tetris and get everything loaded into a 17 ft. UHaul truck. It’s funny to think about the fact that just two months before, we played the same game in Mesa and used a 26 ft. truck.
The UHaul truck they gave me was so filthy and covered in dead bugs that when I got into it to leave on Monday afternoon, it was infested with ants. Ants that tried to eat me alive while I drove. Ants that caused at least three infected spots on my legs and a whole shit-ton of blisters all over my chest and neck. Even ant spray wouldn’t kill the little monsters.
This morning, when I went to get into the UHaul to back it up so we could unload the bed — the ants were still there.
I’m enjoying, very much, having my ‘space’ here at my dads. I think it really helps us be able to communicate better.
He calls me on my cell phone when he needs me :p
As we were driving through New Mexico, the AC in my car stopped working — thankfully, by the time we got to the dealership and they got in it to see what the deal was, it started working again. Diagnosis: It was frozen
Jerrett got enrolled in school today. He’s become so hard to live with that even getting him to go do that was like pulling teeth.
I had hoped to have more ‘back-up’ in the parenting department — but it looks like that’s probably not going to happen, sadly.
I’ve got Dr.’s appointments every day next week, except Thursday. One in Dallas, two in Ft. Worth and one in Decatur.
The oncologist wanted to start me on a medication last week, but I was afraid of the side effects and the impact they might have on my ability to complete my trip to California — so I waited until the day I got home to start them. You may have seen my post on Facebook about shaking like a Parkinson’s patient — I’m still doing it and it’s annoying as hell. Couple that with the requirement to complete a half a ream of paperwork today to enroll Jerrett in school and you get the idea.
I officially write like an old person.
I did some research today on the type of cancer they are telling me I have — I really, really should NOT have done that. I realize, from personal experience, that the info you get on the internet is often one-sided and bleak — but I was reading actual medical websites, so I don’t know. All I know is that Tuesday can’t get here fast enough.
Even with my new sleeping meds, reduction of caffeine intake and regular exercise, I am still only getting about 3-4 hours of sleep per night, which is good I guess — if you consider I went four days without even an hour of sleep the week before last, then regularly got 1-2 hours of sleep after that. Eh, I don’t know.
I went to a concert with some friends last Friday — that was a ton of fun. Still trying to get used to the whole sitting around drinking water while everyone else is drunk thing — but it’ll get easier.
There’s a new Facebook Group where people are sharing their memories of my home town (Boyd, TX) and it’s a ton of fun to read some of the stuff.
The only clothes I have now that fit are some old Levi’s — everything else is so big it looks like a tarp when I wear it. That’s super frustrating and super fantastic all at the same time.
My to-do list is looking more and more manageable these days. I have really put a lot of focus into getting things done so that I can do some ‘me’ stuff after school starts and not worry about having to complete a whole ton of things in order to make it happen.
I sure am thankful for my friend Misty — she lets me talk about death and dying and she doesn’t make me feel like an ass for doing it. She lets me be real and being real is important to me right now.

So — that about does it I think. I’ve had a lot going in the last three months — some I touched on, some I didn’t. I just felt the need to write tonight, so what you see is what you get

Protected: Wondering whats going on?

2011-07-28T21:27:59Z

Protected: Reaching out for your help and advice

2011-07-23T03:06:20Z

No wit and no password — just me

2011-07-19T20:56:24Z

Two years ago, when I found out I had AIH, I wasn’t quite sure what to think. Then I started hearing things from my Dr. like ‘life expectancy’ and ‘liver transplant’ and I started to get scared.

I’ve been living with that fear for a while. Then when we went to the Dr. in LA, he seemed to paint such a pretty picture of positive outlook — I started to hope for recovery. I really did.

Looking back now, I should have realized, you don’t recover from the amount of damage my liver has — it’s not possible. The liver is a powerful and amazing organ and it can do a lot of things, including regrow itself if cut in half, but it can’t recover from scar tissue and AIH makes resection impossible — so for me, recovery is unlikely.

I should have spoken up. I should have required him to keep his damn mouth shut until he had a better picture of what is going on.

I didn’t — so the roses were planted and they grew.

Then this morning, almost a month later, I got a call from Dr. Rosy-fucking-sunshine.

I knew they’d ordered some tests that were quite comprehensive and I knew that at least one of them wasn’t covered by insurance (EOB) — what I didn’t know is what the test was looking for and what it’d tell us.

I should have known that Dr. RFS was being thorough — he’d done just about everything under the sun and what he hadn’t done, he’d ordered.

One of the tests that was done is a test of markers to report function, look for disease and report on the amount of toxins in my blood as a result of the failure. In his explanation, he said that the test is generally used to determine mortality and is the more comprehensive blood test given when the MELD score reaches ‘critical’.

The results of my tests indicated stage five failure, which is up from four. It indicated high toxins, but not sepsis level — although “we can’t be sure you won’t go septic very quickly” and it indicated cancer of the liver.

We talked about treatment, life expectancy and options. The moves over the last three months are what will likely hurt me most when it comes to transplant — he said he’s seen it before. He’s seen them deny transplants based of lack of stability and require the patient to undergo alternative treatment for up to a year before they can be re-added. He said that without further testing, he wouldn’t know if chemo was an option — but that for all the support I needed for transplant, I would also need them for chemo because chemo for liver cancer is awful and hard. Then we moved on to life expectancy — which is where he said it gets tricky. Some people succumb to liver cancer very quickly — while others will linger and fight. He said he wasn’t an oncologist and that I needed to get in with one ASAP, but that in his experience, 6-24 months was realistic.

I haven’t told my family. I’ve told some of my friends (and Twitter) — but my family has so much to deal with right now and that needs to be their focus.

So I’m sitting here with it. I am mad. I never wanted to do any of this alone…and I feel more alone than I’ve ever felt in my life.

I also may have sent John a txt message telling him that he’ll get to honor his vows after all. That was snarky and wrong and I shouldn’t have done that. He txt’d back and said, “eh?” — I don’t have the heart to tell him what is going on, because I can’t deal with his sudden indifference where his compassion used to be…so he doesn’t know (nor does he likely care) either…

Protected: I don’t know where the anger comes from…

2011-07-19T03:09:40Z

Protected: You failed, again

2011-07-18T14:10:52Z

I just need to kind of unload a little this morning…

2011-07-17T16:12:08Z

This is the post where I let it all out — because holy crap — the stress is just about to effing do me in.

So, John and I are separated — that’s going ok, for now anyway. My immediate concerns related to medical coverage and financial help seem to be being addressed. That may or may not remain the same, I don’t know. If money weren’t such an issue, I’d have it all legalized, but it is — so there has to be a certain amount of trust involved…something I find increasingly difficult, since the new personality he adopted includes strong leanings towards lying (and infidelity, but I won’t go there).

I’m staying at my dads place, in Texas. The relationship I have with my family is rocky, at best. It’s been a hard transition made even harder by the circumstances that brought me here. I’m not talking only about my decision to distance myself from the hateful spewing of unfiltered nastiness that was going on in California — but also, the health circumstances of my stepmom.

Then there is the expectation that I will move in here and take care of my dad in a manner in which he’s accustom. That, to me, is laughable. And by laughable, I mean — it makes me cry so hard, I break down in fits of laughter.

Jerrett has turned into this unruly kid with lots of anger, resentment and frustration — but really, who can blame him? He’s mad as hell over this — so much so, he’s not answering the phone (when either of us calls) and he’s making my life a living, breathing, hell.

I had hoped to have more support in this area — unfortunately, it doesn’t appear to be important.

My stuff. Everything I own, with the exception of the clothes I managed to pack for Jerrett and I (and my laptop) is stuck in California. The cost to get it here is prohibitive at this point and even once it gets here, I don’t know what I’d do with it…storage I guess. I don’t even know.

Then there is my work. I’m either stuck in the bedroom (where I’m writing from right now) or stuck sitting, silently, in the living room, where my dad sleeps all day and night in his recliner. I’ve got no workspace and no place to concentrate. This frustration alone makes the decision to stay here incredibly difficult.

I’m discovering, more and more, that I might need to find an alternative to what I had originally thought was the plan. I’m here and I’m staying — but staying means lots of changes that have to take place. Changes that likely wont take place for months and I can’t do that.

So, I’m just kind of stuck.

I know I need to be here, rather than there. I just need to figure out how to make *here* work and at this point, I’m not having much luck.

But it’s not all bad — really. I’ve run into a lot of friends, had lunches and gone out. It’s been seriously good for me. Seriously. I’ve met new people and watched a bunch of drunk friends (very poorly) attempt to play pool and laughed. I’ve hung out in crowds and I’ve mostly been ok with that.

These are things I haven’t done in over a decade. Being married to John really altered everything about who I was…one can only sit home and do nothing for so long before you forget how to do anything else.

So, that’s where I’m at. Just trying to figure it out. Taking things one day at a time.

Yup, it’s hard. But already, good things are happening. Really good things.