I can’t handle it.  Just send me off quietly tonight.  I feel tired and will fall asleep soon.  Please let it be the last time.  I am done.  The pain is too much.  The thoughts are too overwhelming.  The worry of how I will die is unbearable.  I don’t want to go the way you did.  I watched as your exhaustion took over.  I remember mom getting you ice bags everyday to try and numb the phantom pains.  I remember all of the medications you took.  I remember your legs going out on you.  There you were, all of a sudden paralyzed from the waist down.  Your legs turned into sticks.  I remember everything that happened up until your last breath, and even that seemed physically difficult for you.

I’m laying here dad, in pain.  Help me.  I’m not as strong as you were.  Frankly, I don’t want to be.  You have to make sure this is not the same for me.  I feel it happening.  Scans don’t show a normal human digestive system anymore, but a bowl of mashed up spaghetti and meatballs.  “Doc, you say, those are my kidney’s?  Okay sure…” :).  “That little tiny light bulb near the small meatball is cancer?…Okay sure…”

I can’t get past the question, “This is really my body?”  I know you told me to listen to what the doctor says. Truthfully, most of the time, I can’t.  The doctor talks and I just hear a loud fan in the background.  A sound…like, I’m in a tunnel.  I’m caught up in the fact that my body is being taken from me.  My insides are not my insides anymore.  I look at my hands and feet and I see yours as you got worse and worse.  They are getting smaller.  You know this pain in my lower back?  It’s affecting my whole lower half.  My knees are tender, my ankles are fragile, and my pelvis has painful bumps growing everywhere.  What are those?

I see those medications you took all the time.  They are on my bed stand.

I don’t want to take any of them, but the doctor says I have to.  I’d better listen.  I take pain pills that make me awake and sleeping pills to counter that.  I take sleeping pills so I’m not awake, and now I can’t spend time with my family because I am busy sleeping.  This isn’t what they said was supposed to be!  I’m supposed to enjoy all the small moments; all the ones that seem to matter the most, yet we let them slip from our attention so quickly.  Because of the treatment plan, I can’t even do that.

Mira…sweet little baby Mira.  I am trying my best to help with her.  I just can’t sometimes.  She’s getting older dad, and she is strong like us too.  When I pick her up, she just wants to move all over.  She is crawling now too, so there isn’t a dull moment.  Amanda asks me if I can just lay on the couch and hang with the two of them.  How do I explain to her that I can’t dad?  The pain is too much.  The physical pain drags me to my bed for a dose of guilt and emotional pain.  I hear people telling me to spend as much time with my family as I can…but I just can’t right now.  I need to be up here in bed.  Poor Amanda.  She’s having a tough time.  Amanda is a go-getter.  A hard worker.  Let’s turn the bad into good and have a party type person.  She is independent.  She wants everyone to have just as much fun as she is having.  If they aren’t she is going to try and try until they do.  Because that’s who she is.  She cares more about others than herself.  She really does.  She’s like mom in that aspect, dad.  But, Amanda needs help from me.  Sometimes, I just can’t.  There are times that I push through and change the extra diaper, but this kid is getting wild dad!  All she wants to do is explore and learn new things.  What’s this?  Knock it over.  Oh, what’s this?  Knock it over…..She climbs all over me and steps on my ostomy bag!

How about that one.  A problem I am having with my kid is that she steps all over my ostomy bag.  Take that one to the pediatrician.  “Yes, about what month does this usually stop?  And, do they make a Wubbi or Mamaroo to help with the symptoms?”

 Now, baby Mira will never get a scowl from her father, (no sirrreeeee) but she gets pretty close when she hops all around on Ba-Ba’s (Mira’s da-da) Ileostomy bag.  Now, I must put her down and race to the bathroom to avoid a “mis-hap.”

Here’s what I look like today.

It’s thanks to this young lady that got so much press last week that I’m able to take this picture!

Even with that tattoo, I think I can pull “The Bag” off a little better…

(Side note: I am at chemo and they are bringing around Dunkin Donuts this morning.  Now, I scarfed 2 of them down in seconds, but doesn’t that seem a little strange for a hospital to be serving SUGAR to their patients?)

Why should Mira have to deal with this, dad?  She is going to keep getting older, and eventually, the questions will come.  What can I possibly tell this little girl (the one with my eyes) that can keep the seriousness of the situation at bay.  I’ll make it sound like a fairytale somehow.

“Yes, little Mira Joey, that bag is where daddy’s smiles come from.”

I don’t think she will believe that when she is 20.

It’s just too much dad.  And, is it going to get worse?  I need it to happen quickly, and quietly.  My legs are getting smaller.  It is becoming harder and harder to go upstairs throughout the day.  The stairs have become a form of daily exercise, not intentionally.  My body is looking more and more like someone else’s every day.  This physical battle causes a greater mental and emotional one.  Maybe my light at the end of the tunnel is getting dimmer, but, on some days, I feel like I just want to say, “Do it already (and quickly and quietly please).”   I keep thinking of people who deal with much worse than I have to.  Those who are blind or paralyzed for example have it much worse than I do when it comes to daily activities.  I can’t believe what I have to go through, but I couldn’t imagine being them.

I don’t know what I need, dad.

What I do know is, it needs to get better…