posted on May, 26 2017 @ 03:22 AM
This is what living with a deadly disease is really like, sometimes hope is elusive and you go to a really dark place. I hope my little rant purges
the darkness that is consuming me right now. Every moment counts and is too precious to waste on tears, regret and being scared.
I can't sleep. I'm so angry at my body. This is the third time in just over a year that my body has betrayed me and though I'm not giving up, the
treatments don't seem to last for more than a few months or I get immune to them and there's only two more options available after this one, if my
body will even be able to tolerate them.
The past two weeks I've noticed this permeating doom seeping out of me into everything I do, this is the sickest I've felt since I was first
diagnosed... that probably has a lot to do with it. I'm physically weak and my body won't do what I want it to, there's really no words to describe
what that is like, how it makes you want to put your fists through walls... I used to be able to do that! I used to be able to dance too, for hours. I
miss working. I miss walking for more than 10-20 minutes.
I know I'll get better again at least for a while and I'm still expecting my miracle. They happen, even for patients like me. I read a book by this
guy, same exact disease except with him he was diagnosed at end stage, the cancer was everywhere even in his brain. He did his first line treatment
and has no evidence of disease since... and that was like a decade ago. Turns out we have the same oncology nurse. I try to take that as a sign but,
I'm on my third treatment. Five, ten years ago and I would already be dead with this much recurrence. I am grateful for the extra time I've been
given. It's just hard to be grateful all the time.
I decided it's time for myself and my loved ones to start preparing, just in case. I want us all to have some mental tools on hand to cope. Hope for
the best prepare for the worst. I'm just the kind of person that has to know the exact truth and deal with it, my doctor hates this about me. I
haven't progressed very far in this yet. I'm still stuck on not wanting to die. Still pleading to whoever might be listening out there, for my
I can't share these thoughts with my family, so I'm using you, whoever is reading... sorry. Maybe this is the kind of sht people should know though,
especially if they are facing similar or have a loved one facing similar. We can't always put a brave face on and be these serene portraits of silent
suffering as hard as we might try. We may bite your head off at what seems so innocent... a dirty dish left in the sink as my poor son is all too
aware of. When everything takes so much more effort than it used to, things like that can make you see red. Then there's times when you honestly feel
just fine, happy and boom suddenly you're sobbing.
It's after four. I'm either exhausted or this did actually help. Either way, thanks if you read it all... don't feel obliged to say anything. What
can be said to all that? lol