Sunday, March 16, 2014

HIPEC, Disability and Help

Today has been an interesting day. It didn't start out so great, but as the day went on it got better. Whenever I don't feel well, I get nervous.

When I discussed my doctor visit the other day I forgot to mention that I found out that HIPEC surgery may not even be an option for me to consider. Apparently, if I am interested I then need to find out if I am even a candidate. I would sit down with the surgeon after getting a Pet Scan and a CT Scan and then I would find out what option I have, if any.

I kind of thought the option was an option. Guess it is good I found out now it may not be. I had been thinking that I might consider it if things got bad enough. It would really suck to think it was up to me and then meet the stark reality that it wasn't available.

I had been scheduled to meet the surgeon in October, but I declined the CT. Knowing what I know now I think I made the right choice. If I had gotten a scan then, I would likely have needed another one before I could get the surgery. And I hate the idea of the contrast. Whatever he would have told me then might not have been accurate, given whatever might have happened between then and whenever I might decide that I could be interested.

I really feel like the door on medical options is closing. I wonder sometimes if people get what this means to me and my situation. I am not walking around saying what stage I am (since I don't even know), or that I am terminal (I am not asking the question), or any of the buzz words that people seem to use. But just because I am not making drama here doesn't mean that there isn't any.

In some ways the HIPEC surgery terrifies me because of the fact that I would be in ICU for a while, provided I make it out of the surgery OK. I would also likely be in the hospital for at least a month. How can I survive financially if I am out of commission, when I can barely survive in semi-commission?

It would be really good if Disability would come through. It would give me some wiggle room that is really needed. I hope I hear something soon. As I think about it, maybe I will give them a call tomorrow to see if there has been a determination yet.  They said I would likely know something within 6 weeks at the end of January.

I don't want people worrying about me, or thinking I will die, but then if they don't think that I am in trouble, will they even be wiling to consider helping?

I really hate this line I walk. How can I convey my urgency without immersing myself in it?


By the way, in regard to my situation, I have recently begun to share this post on Facebook. Please take a look, and see if you might help.

Thank you.

Can I raise $60 a day? That would be $1800 over the next 30 days...it is not enough for a month of expenses, but it would help tremendously. It would mean selling 1 mp3 at $15 or one candleholder designed by my artistic alter-ego, Cedonaah. It could mean other things, too. But those are 2 very clear possibilities. If each one of my friends found one of these things interesting, it would be about $6000 - enough to give me breathing room for a few months. And if each one knew one friend of theirs that could be interested, I might even be Ok for 5-6 months. There has to be at least something that calls to people with the stuff I do. $15 is likely not to be much for most anyone reading this, but it could make a huge difference to me. Would you be willing to take on helping me be discovered by a minimum of 4 people a day? If even 1/4 of my friends found something of interest, I would almost be to the goal for the month. What do you say? I have a lot to offer, and my work would love a greater audience, and I would love people to find value in the things I do in a way that helps/satisfies us both. And it would help me more than you might imagine. I will consider these thoughts more, and maybe post some possibilities in this, or another thread. Thanks for reading, and if you think you could help in this small - yet significant - way...please be in touch.

Feeling a bit disjointed tonight...well, more than a bit. So many questions. 

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