CANCER - The Taker of all Good Things

My cousin fought so hard but cancer finally took him.  I had heard over the past couple of years that he had cancer but it didn't become real to me until I got cancer too.  I reached out to this cousin whom I hadn't spoken to in over twenty years and he held his hand out to me and took my hand in his.  I was so afraid. When things began to go very badly for me, Jason was there. I sent him pictures of my disfigured legs and he wrote " Damn girl, what are you doing to yourself!".  And he sent me pictures of his dog, Lilly. When I had many first platelet transfusion, I sent him a picture of my treatment chair and told him it reclines.  He sent me a picture of his chair and told me its heated and vibrates AND reclines.  I wrote back "You're always trying to one up me!" We laughed about stuff other people would find ghastly but this was our reality.  We also cursed alot because he was pissed off and so was I.  One day after I had sent him a particularly heated angry email about my own cancer and then I apologized and he wrote back, "No, I like when you do that. Makes me feel like I'm not alone."  It was good to have a friend who could understand how a comment like "Hope you get well soon" or "Enjoy your life" could send us reeling into this angry abyss.  He complained about how sick he always feels and how he is able to actually taste his chemo and I complained about my rash which had swollen my body to almost twice its size and left one eye closed.  And we felt better.  There was no guilt that we were bringing our family and friends down because we were comrads.  Having each other helped us to be able to tell our family and friends we were "fine".  Jason adored his sister Rise Suazo.  And his mom too.  They were the only reason he was holding on.  The only reason he even bothered.  The one time I recall hearing hope in his voice was the day he found out that his tumor had shrunk from 8m to 4m! He was trying so hard not to be hopeful, but he was.  And then there was the surgery.  It looked like they had gotten all of the cancer but he'd have to wait for the results.  I was due for another biopsy and would also have to wait for the results.  We waited together.  On January 18th I sent him pics of my hospital room, IV and my feet which were covered in yellow hospital socks.  He sent me pics of his hospital room and IV and said his hospital socks were gray. "Always trying to one up me!"  He laughed but he was in pain. ALOT of pain.  We both agreed morphine is certainly not the be all end all.  Jason said his liver was blocked.  He hoped the cancer hadn't come back.  It had only been a month! On January 26th he wrote, "It's not looking good for me girl."  I think he was positively heart broken, but a part of him felt relief too.  He was always brave though.  And he helped me to be brave too.  Though he thought I gave him something, he gave me so much more.  I am happy for him and I hope he is chunky and licking ice cream with a full head of hair and talking his ass off up there in heaven. And I hope he is watching me because I feel so alone.  I'm going to miss him so much.  So very much.

C-DIFF (PART 1)

My son has one more class left I'm parked outside waiting for him. Sure wish I had some GasX.  Finally my son comes out of the building and gets into the car. "You OK Mom? " I nod and say I'm fine.  But the closer we get to home the less fine I feel. 

Shit!  I pulled the car over and vomited violently into the street splattering my shoes. I heard my son asking if he should call dad but I waved him away.  Focus.  Just focus.  I opened the windows hoping the 30 degree air would bring some relief and clarity.  If I drive fast enough Ill be able to make it home.  Then I can take my time on the toilet and relieve this mounting pain in my stomach.  As we pulled into the driveway I put the car in park and stumbled up the steps to my front door.  The second the front door is open I am staggering up the steps to the bathroom.  Thank God I got to the toilet.  A salty taste rimmed my guns again and I vomited on the floor.  Why aren't I feeling any relief when I'm shitting out of one end and puking out of the other??!  Something is wrong.  My stomach ...its tearing I think.  Oh my God, is it tearing!  

I am dry heaving in uncontrollable waves. Over and over I retched watching the pool of green bile pool on the bathroom floor.  I stood up and leaned on the sink vomiting all the while.  Wait! I keep thinking. Wait, I can't breathe!  'My knees buckled and found myself on the floor hanging over the toilet bowl.  I kept moving, changing position, even though I couldn't.  I need to get away from this pain.  What if I stand? What if I sit ? What if I....lay.  I'm sprawled out on the bathroom floor as the never ending bile continues to burst out of me.  I start praying because i don't know what else to do.  Please God.  Please God Please God. Help me.  Help me!  I can't.  I cannot do this.  I know for sure I cannot.  By now my innards have been torn to shreds and the violent retching is coming even faster and I wonder how much bile could one person have?!?!  Again and again, one after the other after the other.  I'm not breathing.  There's no space for me to breathe.

I sense some activity going on in the bathroom.  My husband calling 911. No!!!  Don't call!  I will never survive the motion sickness of riding in the ambulance. The floor tiles are so cold on my cheek.  At least there's that.  Suddenly there's more tearing...Am I having contractions?  Yes.  I'm having contractions.  And all I can think of to do is pray.  'Please God kill me,'  I chant over and over again.  'Please God kill me,  Kill me,  Kill me'.  And then there are hands on me...people are in my bathroom.  I know they are asking me things but I'm already dead so I can't answer.  But if I'm dead how in the fuck can I still feel pain?  I read somewhere that when the body is traumatized by pain it automatically anesthatizes itself to cope.  I am here to tell you that's complete bullshit!

I hope they hear me.  Kill me.  They want to know my name.  Kill me.  They want to know how i feel.  Kill me is all I can think of or hope for. Its all i want.  I don't need help.  Its too late for that.  I wonder absently when it is that my mind will break?  There are levels of pain and this is one that tops the pain by which I measure all pain against...being in labor.  There's so much activity going on around me.  Sounds like people are strategizing.  I feel the dull thud of alarm in the back of my mind....omg this must be scaring the shit out of my son...someone get him out of here...don't let him see!  Kill me.  I close my eyes and feel the warm trickle of saliva running down my cheek and into my ear.  What is taking God so long?? I would think killing someone should be alot easier than saving someone.  Its dark and I feel cold.  Am I dead yet?  No. And my stomach is still contracting and my brain is in awe of what the body is actually able to endure.  I'm perplexed by this.  I am the one feeling this pain.  I am the one gasping for air in between retches so I KNOW this level of agony is untenable.  This must be a dream because no human being is capable of withstanding this agony. Sharp things inside me claw at my innards using its teeth to eat my insides.  I am ignoring the things that are going on around me because all of my senses are fully engaged in suffering.  The more I can't take the more that comes.  My body won't die.  My brain won't die.  I'm stuck here.  I know I am no longer on my bathroom floor bu tI can't open my eyes.  I feel the warm gush of my bowels  letting loose.  The stomach pain that follows is exquisite and perfect in its horror.  Its all very surreal, staged, not credible.  There's no pain like this in the world.  Its not possible...you think too big I scold myself.  Naturally this level of agony cannot be real because no one would be able to survive it.  Therefore, it is NOT real.  I close my eyes to it.  Again I wonder how its possible that I haven't broken and then mercifully the shades are drawn and I am no longer here.  

We All Good Now?

OK so I've been on short term disability since October.  My platelets, hemoglobin (HMG), white blood cells (WBC) are all good and they seem to be somewhat stable right now.  So my plan is to go back to work at the beginning of February. 

Everyone continues to ask me how I'm feeling.  "How are you feeling?",  "Come back to work when you feel better", "Hope you're feeling better.", "Glad you're better," and with a twinge of panic, and a twang of irritation, I wonder what everyone is expecting from me?  Not to put too fine a point on it, but last time I checked cancer was a chronic illness. 

I don't know about my fellow MDS-ers but the problem with MY MDS is that my immune system is jacked.  It's weak and extremely bitchy toward me.  We DO NOT get along.  On top of this, I have a secondary disease called Eosinophilia which is the main contributor of my sometimes crippling muscle and joint pain among other things.  My immune system and eosinophilia also happen to be in cahoots with my Phantosmia.  My body hates me. 

Sometimes its the headaches.  Sometimes its the nausea.  Other times its the inflammation.  And then there's the legendary rash that engulfed my body from head to toe for months that just ebbs and flows like the tide.  The important thing to note here is that I never really feel well.  

One of my New Year's resolutions is to beat back and somehow stave off the bitterness that often threatens to choke me out and transform me into something I don't want to be.  In all fairness, people don't know what to say right?  I mean it's awkward.  So what would be better?  "Good luck with your cancer?"  Probably not.

 

EVERYTHING IS NEGATIVE....WTF?

• Oncologist
• Hemotologist
• Rheumatologist
• Dermatologist
• Radiologist
• 3 X-rays
• 2 CT Scans
• 1 Biopsy
• A hearing test
• A balance test
• An Ova & Parasite test

All of this PLUS the endless blood work and somehow EVERYTHING IS NEGATIVE....WTF? How can all of these test results be negative when the symptoms still exist?  This reminds me of that show "Monsters Inside Me" because just like the folks on that show, I have been suffering for a long time--with inflammation (which you can't see) and rash that is actually pretty eye-catching (ie: you can't miss it)--yet conventional diagnostic testing yields no answers.  I am beginning to get the feeling that people think this is all in my head.

Today my arms and hands hurt and we are back to limited range of motion.  Ive been trying to get OFF of Prednisone for 6 months now and I'm down to 15mg per day, but with the pain ramping up again is increasing the amount of steroids I take each day the only answer for me?

"GET BUSY LIVIN' OR GET BUSY DYIN'"

You know, my sisters and I have this habit of quoting lines from movies, cartoons, etc. that we found either funny or meaningful.  Each of us probably has a favorite.  Mine is from the movie: The Shawshank Redemption.  The movie is about a man (Andy Dufrense) unjustly accused of murder and sentenced to life in prison.  Once in jail, he tries to give up on life but finds he can't stop thinking about happiness and freedom and blue water. When a fellow inmate befriends him he advises him to stop dreaming of things that can never be, Andy tells him that in life it all comes down to a simple choice: 'Either get busy livin' or get busy dyin'"

And that's what I've been thinking about lately.  It's hard to manufacture a positive outlook when it feels like you are losing everything.  When you are constantly sick and things hurt all the time, there is no room inside your brain to focus on that nice card someone sent to you or to appreciate loved ones around you.  You just live in this small pool of darkness by yourself and there's just no room for anything as tall as hope or as wide as positivity.  There is only just enough space for endurance.

But in the absence of pain and sickness, things open up and grow...like gratitude for every moment you feel well and acceptance that things will never be the same.  That's the point where you're faced with the decision to 'Either get busy livin' or get busy dyin'".