Getting closer…

Just wanted to say hi, and let you know I’m moving up the listing!  The coordinators are hoping for a good weekend, seeing it is a holiday weekend.  (Extra traveling = increased wrecks, motorcyclists, just overall accidents are increased when you get people together, there’s drinking, there’s fireworks, etc.)  I already know I’m around spot 6 on the list for my blood type, but my social worker says I need a small liver for my size, so that will take some time.  However, if one becomes available, there’s better odds the people before me are larger in size and won’t be compatible.  We’re really thinking July’s the month, and definitely not past the end of August.  There’s a ton of events coming up that I really don’t want to miss out on, so hopefully, I recover fast or probably worse, have to wait till the end of summer for surgery.  According to the official guide “binder” all about liver transplants (a genuine Cleveland Clinic compilation of a whole lot of way too much information), the hospital stay is 1-6 weeks, average 2-4, and I cannot lift over 10 pounds for 6 months.  I am a nanny, so that will not work.  That fact alone wants me to get the liver today.  Rejection and infection?  That makes me want to wait as long as possible.  I feel like a kid when it comes to this stuff.

BUT I am overconfident after last week’s chemoembolization.  It has surpassed my bone marrow testing (age 5) as most-pain-in-entire-life, so I’ve pretty much assured myself that if this is possibly THIS painful, a liver transplant has to be a piece of cake.  I’m most honestly scared of the breathing tube and central line and staples, and those come out respectfully, in 1 day, a few days/weeks, and a few months.  This chemo pain?  UNREAL.  I start crying every time I try to describe it.  It’s crushing, stabbing pain on your right side that feels like you lost a few ribs, and makes you wonder if those ribs are lodged in random organs because taking a breath is THAT bad.  After 24hrs of hydrocodone pills, I developed hives, so I am currently unmedicated and not happy about it.  The secretary says “I can’t find your doctor.”  Yeah the one who did this to me and didn’t warn me about the pain?  I don’t like him very much at the moment.  I have a call into my other doctor trying to get something to at least take me through the night.  I tried to “be strong” and not take the pills because I know how bad for my system they are, plus during my mini-coma, I didn’t feel pain anyways, but I caved Tuesday, and broke out in hives Wednesday.  If I don’t get a returned phone call in the by 4:00, I’m going to the emergency room and getting put on a morphine pump like I had last week.  I’m not kidding either.

In all honesty, I will say I wish I could stay on the list forever.  As I realized and told my mom today, I’m grateful I’m not literally dying, so this is just, at this time, for “quality of life,” depending on if the chemo got the tumor or not.  In all likelihood, it did, but we won’t know till 6 months to a year when I get another scan.  I was told they like to wait as long as possible before putting you under radiation again, which almost doesn’t make sense, but I’ll go with it.  They say this procedure almost always gets the target tumor since it’s an exact chemo hit, but it’s too new to have many stats.  So instead they blasted chemicals into me like a guinea pig and called it a day.  Then my doctor probably went on a cruise, that’s where I imagine he is right now while I’m in so much pain.

I could list the pros and cons of this whole mess all night if I could, and I have so much extra time on my hands that I probably could.  But I won’t.  Because I know how to get miserable real fast, and that will get you there.

So for today… I’m still here.  Waiting for what I fight for, what I don’t want to be fighting for.  I miss my kiddos, I miss the world around me, I don’t like what has happened to me, and it’s ONLY through prayer and God that I know somehow I’ll get through this.  Especially with my doctor on that cruise ship.  He’s probably downing the morphine himself, laughing at his cage of innocent guinea pigs.  I do feel like a human needle cushion, but that’s an entirely new rant…  Especially when they ABG tested me (the king of all blood tests with a ginormous needle – yes, I’m a nurse, and I saw it the other week, and it really is as big as they tell you in nursing school!) and then realized they didn’t have to do it.  

One day at a time.

Thanks, once again, for your prayers, for your thoughts, and for all the cards that are still piling into my home.  ”Thanks” sure doesn’t seem like much but it’s all I have right now.  Each and every one of you mean the world to me.

Love,

Amanda

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