2011-01-28

Yes, I'm still alive

No, I'm not done with treatment.

It's kind of a joke really. I probably shouldn't post here as I just had treatment Monday, and treatment brings with it an almost uncontrollable state of mind. And that mind is very miserable. Pessimistic. Apathetic. I've had 24 treatments now and every time there is a definitive point sometime after treatment (it's now more than 2 weeks than 18 months ago when it was about 6 or 7 days) where I start to feel somewhat human again. I'm not so apathetic and find I actually WANT to do something. So this post is an anomaly in many regards.

I've had a number of people tell me that you chose your state of mind. And I used to be one of those people. Chemicals change that. Deny it if you want, walk it through and you'll find I'm right. Hopefully without having to deal with them.

I think I'm posting because the last 2 years have been very tiring. In a way that Stetson couldn't compare. I've stayed up more consecutive hours than anybody I've ever met. Except maybe my brother's Ranger training, but we haven't compared notes. Chemo tired is so far beyond sleep starvation... it's like a joke. Have you ever felt like you were dying? I imagine people that get shot in the neck think, "oh goodness me, I'm dying." But they don't. They survived in WWII and modern traumatic medicine has improved in the getting shot in the neck department. But I imagine people in those situations would understand. And if they got shot 24 times, I think each time they would still think , "oh goodness me, this is really it" even after being saved 23 times prior.

Why am I posting on here? Because I'm angry. Anger has this....quality to it that gives me energy. It's a trade off though, as if I do anything WITH that anger I usually end up having to lie down, I can't see clearly, and generally need to go into a 20 minute recovery-coma. This anger has been seething all day. Hopefully, the coma will come later and let me sleep through the night.

Let me list to you all the things I was thinking about in this fantasy land of post-treatment I like to sometimes treat myself to. I wanted to:

Ride my bike across America.
Join the Peace Corps.
Play paintball again (and on that subject I had plans to make it a large part of my life and create a community/mentor/education center).
Finally hunt for my own food!
How to field dress different animals needed for said foods
Drag Henry out into the forest for more survival experience.
Go on a road trip to see all my friends that have been dispersed across the US.

These things and many MANY more were what I was excited about. I've been totally isolated for almost 2 years now. And you know how many of those things I'm going to actually get to do? Maybe a road trip. If I drive at night. WHY? Because of the transplant.

Isn't it funny? Get it? Are you laughing as hard as I am? Then you're a jerk, why are you reading my blog?

Of course, I kid. You can still read my blog, even though you're a jerk.

Actually I'm sure it won't be that bad. Life goes on. I enjoyed a lot of those things before, and life change. C'est la vie (although, God, if you get the internet in Heaven I would've rather you'd taken my legs than the sun). There's hope. I'm not yet in despair. God did give me the miracle of a more than perfect match with my brother. Normally they say perfect is 14/14, and he's 16/16. So that means that his immune system, that will be replacing my own (strange...I won't have my own immune system) is or should be remarkably similar to my own.

This means...well nothing really. I don't know the future. If any of the 10 of you that may read this DO know the future, I would love to know so I could plan accordingly. But it DOES put me in the lowest bracket possible for possible graft versus host complications. But I was also in the lowest possible bracket for getting cancer to begin with.

Oh... this is embarrassing, but I'm in the news. My parents have been helping me stay sane by handling all of the insurance/medicaid/scheduling/feeding/wiping bottom/etc that comes with the territory. Turns out when I was admitted for my first transplant and the cancer came back before treatment, Medicaid turns around and says that they won't pay for the allo transplant. Apparently they were pretty blocky about it and finally my dad got the media involved.

I kid you not, it was only when Shands and Medicaid were going to look bad that I was granted the ability to get treatment. Go bureaucracy (why is that spelled that way? come on). I don't know the details of it, but apparently they aren't going to pay all of it (sounds similar to when they first gave me Medicaid, before they took it away...and then gave it back) and I will still have to pay the doctors fees and yada yada yada. My dad put up a site for donations. If you feel inclined, it goes a long way. Doesn't look like we're gonna raise much, but...and this is really the only reason I can see in doing the article/news show was that there are some 10 other people that medicaid is NOT going to pay for.

Soooo if they have cancer anything like mine, that's some heartless policy that is guaranteeing those people will die. Did I mention they wouldn't even give us a self pay OPTION until my dad got the media involved? sigh...
http://jhaysonnscure.com/ - article on the right. News thing hasn't aired yet.

8 comments:

Mccflute said...

Hey Jhaysonn, I follow your blog on my google reader so I'm not sure if it tells you that I'm following you or not.
I think you have every right to be angry, I would be too in your position and knowing you, you've been more than tolerant and amazing through this whole thing, more than anyone could expect of you. I'm sorry it's so frustrating and that this has happened to you, I wish I could do something to help. You have to be more than a little stir-crazy. Want to skype at some point?
What all are you doing to occupy your time?
I completely agree about the word bureaucracy by the way.

I wish I could help carry this for you some or do anything to reduce your discomfort, you're such a passionate, unique, understanding/loving person and personally I'm angry that this had to be in the cards for you.

Glad to hear that your brother is such a good match, maybe this will be a turning point.

Please keep us updated!

<3 you!

Jhaysonn said...

Thanks Mel! You are too kind =). Ya know you sound a lot like Jesus. He's got my back, whatever happens.

I don't do much...really. It's much easier to type than talk. Shoot me a message anytime and respond when I can.

Reggie Taylor said...

Jhaysonn it's Reggie.
I'm praying for you man.
You are a remarkable person.

Metal Squeak said...

Hi Jhaysonn. I agree completely with Mccflute. I am infuriated at the way that our country is taking care of it's people, and I had no idea that Medicaid does this. I don't know what drew me to your story, maybe it was the music (Metallica, right?). :) You're an amazing person (okay, I don't REALLY know that, but I'm sure it makes you feel good to hear, right? :D) and I hope to have 1/100th the talent you have when I actually get around to learning the guitar.

On another note (which may be a long shot!!) if you happen to be a gamer with an Xbox online, you have a formal invitation to play with "Team Metal" and kick some butt in Halo. :D Haha

Good luck with everything, and I'll keep the prayers coming!!

♥Squeak

Leslie Juvin said...

Hey Jhay!

I read your blog every time you post. I think of you daily and pray for your recovery.

I agree with a previous commenter that you are entitled to feel angry on so many levels. Not only is anger a natural part of the process, it's healthy to feel it, experience it, and to understand it.

Your parents are kick ass parents. I hope to be half as good as them when I have my own kids. Please send them my love.

I wrote a post on my blog + a page that directs to your donation page. I know it's not much, but I hope it helps. http://liveloveleslie.com/help-jhaysonn/

I need to get your Gainesville address.

bisous! (kiss)
-leslie

Jhaysonn said...

Thanks for the unrelentng positivity, it does help =)

I don't have an xbl account but I do have a steam one! I haunt gotten into the console world, but when I do, those Sony dogs and their exclusives (heavy rain, kill zone, MGS...).... It seems they'll be taking my money o.O. That and I just found out I can get ff7 on their little store thing.

Lol, gamer at heart =)

I'll pass on the love to my parents Leslie, thanks for always lending an ear/support. Can't wait to freakin call you when I'm done!!

Metal Squeak said...

Yeah, being positive can be contagious, much like laughter! LoLoLoLoL...see? :P

Oh, those dang Playstation exclusives!! I've heard they rock, but I have to stick to the Xbox side of that fence! I'm big on Halo, Red Dead Redemption, and I can kick a$$ on some Guitar Hero/Rock Band!! (97% Enter Sandman on Expert drums!! LOL) And just in case you might have had the thought "Hmm..I wonder if that Kinect device is as cool as they say it is?"...OMG it's awesome! Haha

Okay, I'm sure that's enough ranting from a random stranger for one day! :P Later fellow gamer!!

kristin said...

Hey Jhaysonn,

I have no idea if you remember me or not ( and if you don't its ok ! ). We went to high school together at Douglas Anderson and had a couple English classes together through those years. Anywho, I stumbled upon your facebook via a friend on facebook and here I am. I just wanted to say that I am praying for you an God Bless you. * hugs *

Kristin Ouellette