Monday, June 27, 2011

Chemo oceans

I have spent every day but one at the hospital with Danny for 6 or more hours.  Sometimes he's sleeping, sometimes awake chatting with me, sometimes laying watching TV.  I'm just there to be there whether he "needs" me or not.  Could be at times I'm there for me.  I am taking some days off and working some days.  But, I will not be away from Danny lest the number of days he's around me is shortened.  The "empty nest syndrome" kicks in every now and then even though Julie is still here.  I am NOT talking about the obvious negative outcome of which I will not even write down.  I'm talking about when he's healthy again he will be out and about on his own as he should be.  It was hard enough watching Julie leave home years ago.  I'm just used to Danny being around.  But I want him happy living the life he wants to live by the grace of an unselfish act of love from a donor.

The meds he is getting are chemo meds.  Sunday he said that Saturday he really wasn't feeling all that good.  After I left (and we went out to dinner with friends) he sat in his hospital bed with leg cramps, stomach cramps, and lack of sleep.  He showed me the vein on his left arm, that the IV was in where the meds went.  It was dark and  outlined from wrist to shoulder and it hurt to touch it.  Must have been the meds we thought.  

So Sunday when he was feeling a little better (and I was feeling slightly guilty that I was eating out and drinking beer) he said "My pinky toenail has touched the ocean of chemo meds.  I can only imagine what a cancer patient goes through."

So, today, Monday, his dad and I went down early because he was getting pheresis again and the chemo med (Velcade).  He was already up and eating. By eating I mean a few bites here and there.  He has not eaten much the entire week he's been there.  Weight getting a little low.  Morning blood test had been done. One of his doctors came in and told us he will get his pheresis but not the meds because his white cell count was too low. They expected that but his got low faster than expected.  So he was smiling a little.  Still pretty tired.  Sleeping in a hospital is not that easy.  

Dr Book said if his levels weren't up tomorrow they would wait till Wed to give him the meds.  He's supposed to get out on Thursday but now it's a day by day thing. Then they will do a blood test and two weeks later another one to make sure the levels are staying down.  As needed they will give him more treatments but hopefully not the long term hospital stays.  

Plasma pheresis requires a catheter in his neck to pump blood from him into a machine that removes and replaces his plasma and pumps it back into him.  His neck is uncomfortable for the entire stay but necessary.

That boy NEVER complains out loud about what he thinks is necessary to endure to live. If they ask him specific questions he'll answer.  He hasn't been sleeping well but he hasn't asked for a sleeping aide because he thought he'd just get through it.  I wish I had said something to the docs.  Our chaplain friend, Wendy, told them he wasn't sleeping well and they ordered something for him.  He said thanks that would be awesome.  He thinks even though he's got it rough it's not nearly as bad as so many others have it.

As Doc Holiday said, "There is no 'normal' life, there is only life.  So, go live it."

Sunday, June 26, 2011

Tomorrow and today

Gotta get ready to spend time with Danny at Emory.  So why and I sitting here typing?  What I need is an energy pill.  My body keeps getting tired when my mind wants to go on.

So, now it's Sunday 6/26.  Danny's been here a week and has had two treatments and has two more to go.  One tomorrow and one on Thursday.  His antibodies are so high now the chance of matching someone is very slim.  The plasma pheresis will remove the antibodies and the meds hopefully will keep them away - somehow -. Hopefully.  Not sure how long they can be kept at bay.  He may have to keep getting them long after he has a transplant.

Found out these meds are cancer meds that also help with reducing anti bodies.  So, he's having some side effects that make him uncomfortable but aren't going to stop the treatments.  They said he might feel like he's got the flu.  He told a friend, "It's all good.  This too shall pass."  

He can't eat much without stomach cramps.  Hope he doesn't loose too much weight.

I've been having a lot of "what if's".  I keep trying to push them away but it isn't working very well.  I wish Danny could go up to the lake in Alaska for a few weeks. But that would take him off the active list and he might miss his chance.  However, he might not have another chance to go to the lake.  Damned if you do and damned if you don't.  What to do, what to do, what to do?  So much I would have done differently if we had known he would be on the list this long.

Sometimes I sit and think and sometimes I sit and cry.  Not sure which helps.  Thinking hurts and crying makes my nose red.

Just want it all to stop for his sake.  I want it finished and over with and to see him fishing at the lake with buds.

Oh well

Everything I have to say has been said before
By some other face in some other place
Along some other shore

So why do I bother writing my thoughts
I can't rhyme my words, have no time
Life still bleeds it's do's and ought's 

to be continued...

Saturday, June 25, 2011

Just for you

Just for you I am smiling
Just for you I won't give up
Just for you I am surviving
I know you will be here no matter what

Sunday, June 19, 2011


I have to re-evaluate my point of view.  Maybe, just maybe, everyone else doesn't see things the way I do.  Amazing concept isn't it?  Actually it dawned on me yesterday that what I think is important isn't important to everyone even though we live in the same world, same yard, same house, same room.  I wish I could explain this better cause I'm sounding like I'm totally self centered. So, here goes.

Yesterday with all the storms the tomato plants in my front yard fell over.  I have two that are in cages right beside my front porch. (The dirt there is awesome and I don't have to water them.)  I've been trying to get Kerry to fix the cages so that they don't fall over in the wind storm.  He hasn't done it (obviously).  As I was looking at them some little smart ass voice inside me said "who gives a crap about some spindly ole tomato plants? You were the one who wanted them, you're the one who likes to dig in the yard, you're the one who thinks they should be all neat and pretty.  So go fix them yourself."  And the little bastard has a point.  I look at my front yard and see weeds and bald spots.  Everyone else around me sees green stuff on dirt.  Who cares if it's a weed, it's green.

I see a messy house and everyone else sees a well lived in, comfy place to lay their head.  

I'M the one who doesn't fit in here.  And I'm the one who keeps trying to change everyone else.  Can't do it, won't work.  I should stop.    And I try to but it's just not working. So something has to change.

And I think that something or someone is me.  I know I've changed a lot since Mary left.  Some people can tell, some can't.  Guess I expect others to live up to my expectations.  Must be that control factor.  I know I can't live up to theirs and I don't want to try. So what is it inside me that wants everything to be and look like I want it to?  

So now I'm going to try to change myself.  I have to just let life go as it goes.  I can only control what I put into my mouth and I'm lucky I can do that. So, I'm going to start getting rid of the junk in my life that is clouding my perspective.  I have a lot of "stuff" that everyone else thinks is junk.  So maybe it is.  If I give up some of them maybe I'll have more time to be more patient.  I don't know.  Am I grasping at straws?  

Guess I'll figure it out one day. 

Saturday, June 18, 2011

At Last...

I've been asking off and on why the docs don't try to reduce Danny's antibodies so he has a better chance of matching a donor heart.  Mostly we're told that reducing them now will only mean they'll come back later.  But newer and better medicines have come out in the last few years.  Or at least they have been used by enough heart centers for our docs to get a warm fuzzy.  So, Danny's checking in at Emory on Monday for 10 days to start a regimen of procedures and meds to lower his antibodies and hopefully keep them down.  No guarantee's but name something that is guaranteed in this world. 

I have to admit I am nervous, scared, anxious, even a little worried.  Time to go play in my art stuff and relax.