This won’t even make sense…chemo side effect babbling bs

February 17, 2013

I gave up ‘fighting’ with other people because it takes all of my energy to deal with this disease and everything it throws at me. I dot have the energy for anything else. I bet some people think I’m much more agreeable now, or perhaps don’t care, or get angry about things. Sometimes I feel like my whole life has been a fight.

People are always saying things like, “You’re a fighter!” and “You can beat this!” and I sometimes just sort of smile at how everyone presumes what I can and cannot beat, or even that I want to try anymore. I love how everyone is always so positive and insistent about the concept of the war I’m fighting…when all I can think about is how it FEELS. People internalize what they see on TV or read in a book and they assume that’s everyone’s reality of ‘cancer’ but until they’ve actually participated in some way- seen what it’s like in “real life” they actually know nothing. Sometimes I do get angry at people – but then I realize they don’t really understand what it’s like. I didn’t…before.

I mean, I’m not normally a good receiver of bad news but I am pretty sure I have reached a new level of lunacy where I now hear only the negative pieces of the medical conversations and I think all of my own medical professionals are hiding things from me or flat out lying and I’m just being experimented on like some lab rat. And since lab rats dont talk- neither do I- I just look at them when they explain what “we’re” going to “try” next – and smile and nod my head and sign the paperwork. I mean honestly, my head is screaming “I don’t believe you! This isn’t going to work! You’re just going to kill me!”. But the words never come out of my mouth. Really, “they are doing everything thy can to save your life. You are very lucky grace – you’re working *with* some of the best oncologists in the country.” With? But frankly, I don’t trust them now- but don’t be offended- I don’t trust anyone. But let’s get started with the torture that they claim (again) might make me well. Shall we? Yes, we shall…and we did!

It really sucks not being able to talk about any of this…like I have to be so fake and guarded all the time because I’m so goddam afraid! The panic sucks so bad- I feel like I can’t breathe – I feel like I’m going to die….yeah, it sucks. But there’s no one to talk too about it! No one! Nope! No one! I wish I was normal. What 41 year old do you know who carries around a blue blanket like the kid from Charlie Brown….its because I’m insecure and untrusting. That’s why.

I never imagined how difficult this process was going to be emotionally. I don’t know from one day to the next if I’m making the right decisions. What if I’m not? And I’m incredibly scared, confused, isolated…But I can do this by myself. Like there’s a choice. I mean – I did when I was 5- (like there was a choice then) so I can now. If you tell people how scared and hurt you are they’ll just tell you to grow up! You’re not 5- you’re an adult now so just deal with it! Theres no reason to be scared. Or ignore you. Or worse- they’ll hurt you too. Hurting sucks.

I wish I didn’t feel so disconnected from everything – I wish I could find my way back home. I wish I could talk about all of it… yes, I “wish” this were not the case either…but it is. It really is…

I just feel so defeated today. I’m exhausted and in pain and frankly, it all just feels like a cruel joke. Not only am I still devastated from the test results now I’m still dealing with all of the shitty side effects of the chemo. And it sucks and now it’s like my body has betrayed me yet AGAIN! And frankly, it sucks. A LOT

Filed Under: Apparently I'm in a *mood*, Bitch-slapped by the universe, Bitter is the new black, Buried in Blackness, Chemo is Cumulative, Dear Insiders: Stop bothering me!, Fumbling in the dark, Invalidation, Me & the big C, Oh the Anxiety, Pain is Pain, Shaking in the dark, Shit! I attached to my feelings, Stick a fork in me

Please help me with the fear…

January 3, 2013 2 Comments

It’s been over 2 years since I was diagnosed with cancer.  You’d think it would get easier and easier to ‘deal with it’ but that just isn’t the case.  Today my body hurts sssoooo bad and I just don’t feel well.  I’m not handling things well.  And I need help with the fear.

It attacks me deep in my gut.  Last night it caught me off guard and I was unprepared and unable to deal with it.  It huffs and puffs and blows all of my walls of defense down.  It isolates me.  Reminds me that I’m inadequate – unable to endure – unable to fight.  Surely theres someone out there who can understand the intensity of what I’m going through – the journey my life unexpectedly took just over 2 years ago.  Fear speaks fact…but is it truth? It sure feels like my truth.

But instead of speaking – I hide. I hide out of fear of being vulnerable…it’s gotten so bad that I’ve been having nightmares about losing my friends and not having a chance to tell them good-bye.  So I try to distance myself because its killing my heart and I don’t know what to do about it.

Shaking in the night, I hold tightly to a few comforting things in the darkness as I try to remind myself, “All I can do is keep breathing.  I can’t change anything now.”  But the ‘what if’s’ are haunting me.  I just don’t get it! I cling in desperation to a few comfort items, “Please let me feel some relief…some peace.”  Why I can’t ffeeeeeellll it?  I just don’t get it.  I don’t want to fight anymore.  My heart feels callous and hard.  I desperately want to cling to some hope but I am so afraid.

And no one seems to understand.  They are all like, “Youre so positive – you can do this.”  Or…”Live for today.”  Really?  Tell that to the people I see every day at the clinic, or the ones who died – or the ones in hospice, or their family members. The 23 year old who died last week. The 6 year old who died 2 days ago! I know the odds are not in my favor!  And it is INSIDE of me!

I am not fine – I am terrified.  But I can’t share my feelings with my family or my friends because then they’ll be scared too and I don’t want them to be in pain too. I try to speak of it to the therapist but I turn away to spare her the pain that breaks me each day.  It is not okay – I’m not okay…I am barely breathing – just ask my onc staff…

The fear is the worst part…I remember being little and staring at the door just waiting in fear for him to come in…35 years later – I’m living in fear again…only it is all inside of me.  I just need to let go of the fear.  But I don’t know how…and it never goes away.  I don’t want to be scared anymore.

Filed Under: Are you there God? it's me again, Buried in Blackness, I can't breathe, Oh the Anxiety, Shaking in the dark

Why the long face? Dreams were never reality anyway

January 2, 2013

Feeling a little melancholy today. Sad for what I’ve lost– they were only illusions anyway, so why am I so sad? They say to picture what you want and work towards it. So that’s what I’ve done. I did everything right. I did! But then cancer came a knocking anyway. Fuck. I feel like I’m in a dream, like none of this is real, but I know it is.

But of course, my dreams are now on hold indefinitely, probably permanently. I don’t want to be pessimistic or fatalistic in my thinking, and I don’t think I am. I think I’m realistic. I got a rude awakening– I cannot control my destiny entirely, contrary to what Oprah has always taught me… I was on a path…grow up, get out, get an education, a career, save for the FUTURE! Instead I have to somehow figure out how to live and move forward when the statistics say I will be dead within 5 years. What the fuck? I cannot wrap my mind around it. It seems so unbelievable to me I have to live in the present now…there is no future…probably.

Living in the present. Isn’t that what all the yogis and Buddhists and granola crunchers strive for so hard? I’ll tell ya how to do it. Get cancer. Get a cancer with a bad prognosis. I can no longer picture past 2 months in the future. It’s like I have become incapable of imagining it. Just live from scan to scan… I think it is too painful to imagine the future anymore. When your dreams are shattered with one phone call, you don’t set yourself up for that pain again. It is (ironically) self preservation of sorts. Of course, those with more judgmental minds would say I’m setting myself up do die then. I have to envision being healed or there is no way I will be. It’s all about positive attitude they say. To that I retort: BULLSHIT. If that were the case, then I would have been healed a long time ago. Shit happens. Face it. I know it…and you know it too.

I can HOPE for the best, and god knows I do. But I cannot predict the future. My best indication lies in the statistics on what has happened to the overwhelming majority of people in my situation. Sure, I can be the one that makes it! I WANT TO BE! But please tell me how to wrap my mind around the uncertainty of not knowing this for sure. I will live in limbo, not knowing, for the rest of my life! There is no cure. It can come back at any time. I just don’t know how to make the adjustment from living life knowing that I would probably live to 80, to knowing that I will probably be dead within a few years. It changes EVERYTHING.

How you spend your ‘free time’, for example. Do you want to spend the rest of your time in hospitals and doctors offices? Do you want to spend it working? It’s easier to go to work and suck it up when you know the odds are in your favour to live till your 80, right? There is plenty of time for “free time”. And don’t come back at me with the old “well, you could get hit by a bus tomorrow…” That’s a load of crap. Sure it could happen. But you know damn well that there is 99.9% chance you won’t and over a 90% chance you’ll live till 80. So every decision you make in life is based on that implicit understanding. You don’t think about it often, but this knowledge is the basis for how you order and pace your life. You put off that trip to Italy so you can save for 3 years. You save the maximum in your 401 every year from the time you started working. You never take a dream vacation. I don’t have the LUXURY of thinking that way anymore. Believe me I wish I did. It is much easier to live that way. Living in the present is not all it’s cracked up to be…(not that I ever thought it would be – but neither is dreaming for a future that probably isn’t there, either!)

My heart aches when i think i probably wont see my kids graduate college…hell, maybe high school. that I won’t see them get married, or have their own families. It sucks! But shit happens. Shit just happens. I guess I never thought it would really happen to me. Not now…

Filed Under: Apparently I'm in a *mood*, Are you there God? it's me again, Bitch-slapped by the universe, Buried in Blackness

I don’t wanna talk about it…

October 15, 2012

They always say the same thing…ask the same questions when they walk in…
What is your pain?
Can I get you anything?
Do you think you want to take a shower today?

In the afternoon…
Do you want your blinds open?
…
I don’t have any pain
No, thank you, I’m fine
I don’t know…
Ether way…

And I just stare out the window thru the blinds…visitors in and out…listening to the nurses in the hall talk about other patients, photography, their night off- (and they stayed up way too late) (I wonder if they know *we* can and do listen to their conversations), scrapbooking…listening to the other patients and their families…sleep – awake….no concept of time really…just waiting. For nothing. More of the same.

I don’t wanna talk about it. I can’t…

Filed Under: Actual conversation, Apparently I'm in a *mood*, Buried in Blackness, Fumbling in the dark

Last Friday night

October 8, 2012

It isn’t fair, no one deserves this. It is scary, it’s horrible- it’s so damn painful and frustrating, . Despite the feelings our friends and loved ones have for us, it is fair and understanding that people give us the head tilt of feelings of sorrow, thanking whatever deity they worship that it isn’t them, let’s be honest–I know I would. I mean, I would be there to do whatever was necessary, but I would be thankful that my body hadn’t turned against me and wasn’t trying its damnedest to kill me. This is something I wouldn’t wish on anyone, especially someone i promised to share my life with, am financially, and socially bonded too- share children with- a home with…a life with. Or a friend who is there for me in pain and laughter…good times and bad.

On the bad days i need people to help me walk because the pain in my back and hip is unrelenting. I need someone to help me remember appointments because I can’t sometimes and i forget to write them down. open a bottle of water when my hands are numb from chemo and the occasional bottle of wine because I can’t feel my fingers. these people have to live with the fact that I have a ticking time bomb inside of me….knowing my days are numbered–I just wish we knew how many were left.

I’ve been having trouble letting people in lately. I’ve been down but I’m trying so hard to find some sort of light…that isn’t a fucking train in this tunnel. And I try to let the hus in- but he can’t seem to handle it- and then I pull even further away – hiding more, thinking he’s unsupportive *emotionally* but he’s always been that way, so I can’t fault him for it. I dunno…it’s so hard… Where’s my rock? I should just be satisfied that he’s “here” – I mean a lot of people don’t even have that, right? – and I am thankful… I dunno…

My oncologist suggested that I join a support group…..I disagree wholeheartedly. I am not a fan. – Although I’m sure for many people they are what carries them through hardships. I know myself well enough to know that I won’t benefit. Been there done that…Just breeds more self pity, in gemeral. I am a one-on-one type of person. And also am a lay-it-all-out on the internet type of gal. And not everyone can appreciate that I say fuck a lot and write about having to pee…apparently this is me, “dealing with it”. And don’t think that “it” is cancer….”it” is everything that comes with having cancer. And everything that came before the cancer.

Last Friday night I was so sick and overwhelmed and this all just came to light again- and it was just so…disappointing….not surprising- and yet, disappointing… It’s no ones fault- it’s just the situation. It is damn tough to maintain any sense of positivity because I have been so so sick. It is hard to see the other side when you are forced to look fear in the face and make a choice. I chose to say “fuck you cancer” and power through–dragging the hus, my friends, and all of you all along for the ride.

Filed Under: Apparently I'm in a *mood*, Are you there God? it's me again, Buried in Blackness, Cancer Sux

2am…Breathe

August 4, 2012 1 Comment

I have some serious PTSD from all of the treatment from the past two years.  I am completely traumatized.  Every time my phone rings and it’s a doctors office I start to have an panic attack.  Every time I’m at an appointment – a scan – a blood test – chemo…anxiety constricts my breathing.  I alternate between horror and shock and utter fear and despair and hope that this isn’t as bad as it seems.  The knots in my stomach attack at will.  Sleep eludes me even when when *aided* and at 2am I try to distract myself from myself – I try to find some small comfort somewhere…something… 

Its 2am and I want to be a two year old and throw myself on the ground and have a good old fashioned temper tantrum, “NO I WON’T DO IT!  YOU CAN’T MAKE ME!  I DON’T WANNA DO THIS!!!  I’M SCARED!”  But I have to put on my big girl panties do what has to be done.  I don’t want big girl panties anymore.  I want someone to hold me and make me feel safe and tell me it will all be okay. I reach over to touch the arm of the man who lies next to me.  He cannot keep me safe.  Safety has no meaning here.  We are not safe.

As the tears fall down my cheeks onto the pillow, I pray.  I pray because I don’t know what else to do.  I pray on the chance that this prayer will matter to the outcome.  I pray because I am so burdened with things that I need someone else to carry  for me that I keep trying to cry them out.  I pray because I’m still trying to hold onto hope that maybe there is a loving God in the midst of circumstances that seem anything but loving. . . I pray because I’m struggling.  I pray because tonight I am sinking.  I’m sinking.   I’m begging God to rescue me in the midst of the sea of despair and fear by healing me.  Show me you’re here and heal me.  Reach out and hold my hand.  Please… Help my unbelief.  I have a little faith.  I can’t fix this and it sucks.  

I’m no stranger to awful- but how much more of this can I keep doing? I know in my heart I cannot be pushed much farther or I will break…I will fall into an abyss of grief.  Oh, ye of little faith.  Please…help me to have more faith.  Perfect faith casts out fear. I do not have enough faith because I’m terrified and uncertain. Nothing is certain except the horror of facing this.  I don’t see how you could see what I’ve seen and not be afraid of what is to come. Pray with me

Filed Under: Are you there God? it's me again, Buried in Blackness, Cancer Sux
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