Friday, February 9, 2018

5 years since becoming a vampire.

This is a hard time of year for me.  Its been five years since it happened.  Its been five years since my life changed in what felt like an instant.
I refer to it (to myself, of course) as when I became a vampire.

Think about it.  I was dying.  I had maybe two days of life left in me.  Then, I was rushed to a big hospital in a major area to be treated. I was given blood or blood products daily.  I became very sensitive to light, sound, and my taste buds changed dramatically.  My appearance changed, skin became pale and pink, dry, and I lost a ton of weight.  Without receiving blood, I would die.  My sleep patterns changed.  Everything changed.  I had dreams of being chased by vampires nightly in that hospital.

Sure, it might be a modern interpretation of an old tale.  I'm one who has always been scared of vampires.  Even after I realized I was becoming one. 

To this day, I still think I am a modern day vampire.  The sun and bright light gives me instant headaches.  I wear prescription sunglasses even on cloudy days, and sometimes, in stores.  My senses are so acute, it drives me and my boyfriend nuts (I almost said Batty, no pun intended).  I get dehydrated easily, my blood sugar can fluctuate at odd times.  My tastes have changed, I crave more meats than before.  I sleep a lot...and take 2 hour naps during the day.  
Hey, its 4 am and I am up.  I will go back to sleep around 5:30 or so until 7 am.  
Even though I don't require blood, I get my blood tested and I still am so concerned about my numbers.

Here is the other thing: I am ridiculously scared of death.  I know we will all die.  I don't like that, and I am so worried about what happens after you die.  I will be faced with that eventuality, and I deal with those feelings and concerns daily, but I don't like it.  I want to live so badly, I can't explain it.

I've also become more of an introvert now than ever before. I do speak my mind and possess a different confidence, but in a stand offish kinda way.  Does that make sense?  I'm not shy to speak my mind, and I'm not looking for friends. I keep to myself.

I thought this would be a happy time, but this week I woke with a sore inside my mouth and again thought the worst.  I'm sure it was a cut from eating potato chips with my nieces the day before.  Its healing just fine.  That first day it was sore and noticeable, I was genuinely scared.  I kept it to myself, but it consumed my thoughts that day.

So no, I don't drink blood.  I look and feel the scar every day that became the entryway for me to receive my blood and chemo (my port scar).  I can't handle sunny days or very light reflective days because my eyes are sensitive from 2 years of Tretenoin pills.  My skin is crazy because I have allergies.  My nose is sensitive because I lost protective linings in my sinus cavities as a result of chemo.  I sleep a lot and at weird times because my body is tired and it gets tired faster now...when I was in chemo I would sleep 18-20 hours/day at times.  But, sometimes I sure feel like a vampire, because I am scared to die.

Tuesday, July 4, 2017

Still Tired, but healthy

So, I am still taking daily naps.
I get so tired, I usually go out around 2 pm and wake between 4-5 pm almost daily.

After dinner, I watch a bit of tv and am in bed by 8 pm.  I might not fall asleep until 9 pm some nights, but I do.
I try to get out of bed by 6 am, but again, it might be more like 7 am when I actually "Get Out" of bed.
Its been a long time of this --I'm wondering if its habit, or is this part of the New and Improved me?

Does anyone who went through a similar Chemo regimen or almost 2 years of chemo have this issue?  Does it ever go away or is it part of me now?

I am blessed to get another day.
I still strive and want to be able to go to my parents home to help out around the house and yard.  I still want to do more around our own home---I know it will happen.
I'm sure as I lose some more weight it will help.

Please, comment and let me know your story.  Anything hear ringing a bell for anyone?
Thanks- Happy Independence Day- be safe out there! God Bless

Friday, February 3, 2017

Cancer- rebirthday

Yesterday, I turned 4.
Wow, time flies.  Almost two years I was treated for leukemia, and the past two years I have spent trying to get back to living.  Its been rough.
Yesterday, I was talking to my boyfriend about that day and what followed.  Everything that happened and came so quickly-- dealing with
  • cancer diagnosis
  • likelihood of never having children
  • treatment-- chemo
  • all the blood transfusions
  • gallbladder removal
  • losing my hair
  • getting a port put in
  • allergic reactions to medication
  • all the vomiting
  • losing my sense of taste
  • increased sense of smell
  • gaining lots of weight and losing lots of weight
  • rashes
  • yeast infections
  • the shape of my tongue changed
  • c-diff and wearing diapers
  • shingles
  • not being able to stand or think clearly
  • wearing a surgical mask everywhere I went, even just outside
  • money/insurance issues
  • crazy headaches from the ATRA pills
  • light sensitivity
  • skin peeling all over
  • losing my fingernails and toenails
  • chemo induced menopause-- all the hotflashes (10/hour!)
  • losing hair in places I didn't think was necessary and missing its purpose!
  • exhaustion
  • sleeping 12 + hours a day on the couch
  • showers with the port
  • port changes and daily flushes
  • home nurse
  • fevers
  • pneumonia on Christmas
  • wisdom teeth removal
  • cracks in teeth
  • becoming allergic to everything I use on a daily basis
Now its about living.
I am blessed to be alive.  Endless hours of golden girls during my treatment taught me nothing is the end. we keep going even after the show is cancelled.

Monday, January 16, 2017

February 2 is coming quickly

That will be my four year anniversary.
Its very scary to think of that.  At the beginning of the year, I had a cut on my tongue.  It was like a paper cut on my tongue, with a nasty flap of skin that hurt like a mother.
It hurt for about a week, and I went to see the doctor.  She had no idea what it was, at that point the flappy part was wrinkly and white, because it was kinda dying and drying out.

She wanted me to see a specialist and mentioned the word "biopsy".

I couldn't sleep that night.

I had the fear in me that I was sick again...this was the beginning of it all...again.

I honestly couldn't sleep or think for about 24 hours, but then, the salt water rinses started to help.  The pain got less.  The bump got smaller.  I could talk without pain.
I felt like an idiot.
A complete and utter idiot.

Try telling someone this story that hasn't had a crazy illness or fought for their life.  Try telling a story of how a bump and cut on your tongue led you to think you were going to die and think they believe you.  They won't.  They won't get it.  People won't even validate your feelings.  You are over-reacting. You are silly.
Am I?  Am I?  What happened to me is sheer luck. I am alive today.  But, the feeling of being deathly afraid of getting sick again...its real and its dark.  It is a mindgame.  I know that, but I can't shake it.

I can't seem to get over it.

I am utterly grateful to be alive and I sincerely try to give it my all each day, albeit I am still tired a lot.  I try to savor moments and I sometimes take it for granted, still, but I feel that's living.

When it comes right down to it, though, I am still scared out of my wits to get a new car, have a car payment, buy things, or even work too hard...because if it happens again...then what?

My head is a scary place.

How do you deal with it?  What advice can you give?  This is the time of year when every hot flash and night sweat has me nervous.  A cut on my tongue put me in a mind meld last week--- I didn't talk to anyone about it, made me think awful thoughts.  I even thought I shouldn't put BD through this again.

I need a vacation from my head at this time of year.  Its too much.