Monday, December 12, 2011

Fight like a girl!

It was Christmastime and I carefully untied the pink ribbon from box and lifted the lid. Inside, nestled in pink tissue paper were two tank tops. My friends looked at me and smiled as I lifted the first one out and held it up. It was light pink and on the front were a pair of red boxing gloves and written in black script was the phrase, "Fight like a girl." the other tank was white with a red post it note on the front and the post it note said, "To do - kick cancer's ass.". I looked at my friends and returned their smiles.

"We thought you could wear them to chemo." they had them made especially for me. They are such good friends. I am blessed...well, except for the cancer thing, and the PTSD thing, and the history of child abuse, no parents- but hey - we all have our "issues", don't we! And you cannot go to chemo without the right t-shirt!

I can fight. I have had to fight my entire life. When you're born into a family where you're not wanted, and, in fact, hated and abused, you learn how to fight. There were times I fought myself...beat myself up just because. I spent the last few years trying to find some peace from the internal fighting. another internal fight was beginning. But fight cancer? I was really good at kicking my own ass- an expert really...but kick cancer's ass? How?

That was last Christmas...I'm still fighting...

Saturday, April 9, 2011

Back in the hospital...major PTSD triggers!

And…I’m in the hospital. And…I currently have more platelets dripping into my veins – which, depending upon your view – look like cloudy pee or cloudy lemonade. And I’m sure that once the new platelets enter my body, they will either wither and die or join the existing platelet union and do nothing or work when they want –but I highly doubt they will “be fruitful and multiply” if you’re picking up what I’m laying down.

Last night I was allowed two doses of ambien and a percocet for my sleeplessness and pain; to which I said, “I accept!” graciously and I slept for five straight hours (which I barely remember) – and then went back to sleep until…well I dunno – I’ve been basically sleeping off and on all day and the clock is about to strike 3pm. I was thinking (okay – it was “suggested”) I eat something – but upon detailed scrutiny of the “room service” menu – there isn’t one thing that sounds good, or even decent – so I dunno how that’ll work out –besides they don’t even have wine suggestions on the menu…hello!

My favorite time of the day is when the docs ask me how I “feel”. It’s funny in that they don’t care…but also in that I’m all sick and cancery looking and they’re all, “how are you ffeeeelllliiinnngggg this morning?” Hello! How do you think I feel? But I’ve been fever free all day today and my platelet count is up to 44 – yay me. So “keep up the good work and that means chemo will resume on Monday.” Again…yay me.

I have to say I’ve come to the conclusion that hair is way over-rated. For real – I mean it’s really high maintenance and think of the time and money you save when you don’t have to do your hair or use mascara or any of that…I could spend a hundred bucks easy on hair spray and mousse and gel….. And summer is coming up – haven’t you ever wanted to shave your head because it gets so hot out? Add to that ‘chemically induced’ menopause hot flashes - and I really think I'm getting the better end of the deal here.

My gramma used to wear a lot of scarves. Every day she wore a silk scarf – mostly to keep the wind from blowing her hair, she would wrap them around her head and tie them under her chin. I have only one of her scarves, a blue one, and I don’t know what happened to the rest. I’ve been wearing it a lot the past week because it reminds me of her and makes me feel closer to her. When I feel like I can’t get through one more minute of this I touch the cool soft blue silk on my head and I think of her and I imagine her here with me , singing to me like she used to when I was a child in the hospital with recurrent kidney problems.

I haven’t spoken to the therapist in over two weeks. I have been vacillating between being terrified and wanting her to save me to being angry at her for continued miscommunications. Cancer sucks…it sucks even more when you feel alone and have a mental disorder from past abuse that screams at you never to trust or depend on anyone to “be there” for you – for you will surely only be deserted again. She sent me an email last night saying she would call me tomorrow to touch base since we haven't spoken or seen each other in a couple of weeks, but I don't know if I'm prepared to talk to her. The whole 'attachment' fear is looming again...

The past week of invasive medical procedures has left me raw and edgy and I imagine I would be headed toward the mental floor after being dismissed from the oncology unit were it not for the continued dosing of Ativan. PTSD triggers lurk around every corner in the hospital and my phobia of being touched and severe physical boundary issues are becoming difficult to manage.

Thank you – to all of you who emailed me, text, called…etc…I’m sorry I haven’t responded. I’ve been overwhelmed, self-absorbed, whacked out on meds, too depressed, afraid to reach out – and more! The lottery of bullshit feelings and emotions of the ‘mental patient’… I’m still feeling all of those things – and I don’t know when (or if) it will get better. Those of you who know me well know I spend way too much time in my head ~ thinking…and when the time comes to talk about what it is I’m thinking about, or how I’m feeling, I’m just too exhausted to talk about it. Some days it’s too much to face – and I know that ultimately, I’m the only one who can “face” this …

Love to all ~ G.

Tuesday, April 5, 2011

Of all the things I've lost...I miss my eyelashes the most

I was supposed to start a new round of chemo yesterday but I'm sick, so, as the soup nazi would say, "No chemo for you!"  Each time a chemo treatment gets pushed back I feel a sense of bitter-sweetness because it's poison, yet I know it's poison that is meant to kill the disease that's trying to kill me, so I'm caught in a paradox...I hate it - but yet I hate it when it's postponed too. 

Everything is so unpredictable and nothing is the same as it was...I feel old and tired and I'm not yet 40.  Today I was talking to a couple of friends of mine who were visiting with me; I was feeling down about my physical appearance and I jokingly said, "Of all the things I've lost I miss my eyelashes the most..."  I have like 4 eyelashes left!  One of my friends, "the fixer" quickly rushed to my aid, offering to bring in fake eyelashes, wish some glue and some mascara she could fix me up as good as new!  My other friend, very practical, told me that my eyelashes will grow back.  True nuff...but so can the cancer. 

I don't know what's wrong with me right now.  It's late and I'm tired but I can't sleep. I have so much to be thankful for and here I am in the darkness of the night complaining about the fact that the chemotherapy has stolen my eyelashes.  That sounds pretty stupid, doesn't it?  It's just that I *feel* bad right now.  I know it will pass but it's here now - the fear and the sadness - perched right next to me, uninvited guests to the surprise pity party.

My body has changed beyond recognition over the past 6 months.  The original structure is still there - but it's as though a tornado has ripped through and demolished much of it.  

I have been searching but I am unable to find any peace tonight.

Saturday, April 2, 2011

This too shall pass

Or will it…

This time last year when I would become overwhelmed with feelings and emotions I would cut myself or drink myself into a dissociative state. There were times I would wake up in a pool of blood and not know how it happened. Friday nights were the worst night of the week for me because more than twenty years later I would still play out the same scenario of abuse over and over again. I couldn’t get through a Friday night without hurting myself – most of the time I didn’t realize it was even happening.

I never learned how to sit with my feelings or even “feel” them – or allow them – and know that they would eventually pass – no matter what they were. When I would fall into the pit of despair it felt like I would never climb out…all that has changed now. I don’t know why so I can’t explain it. I still have the same emotions, the same thoughts – there are times I’m still depressed, and I still want to hurt myself – but I haven’t. Not since I was diagnosed with ‘the cancer’.

They say a cancer diagnosis changes your life. It’s true. Since I was diagnosed with cancer my life has changed dramatically. I have an incurable, but ‘treatable’, form of blood cancer. My life now is so different from what it was a year ago I don’t even recognize it. My life is now chemotherapy and cancer centers and hospitals and fighting to live and not die. I look back on my life now and I want those days, weeks, years back. But I can’t have them… I only have right now.

I hear people say cancer is a gift and they’re thankful for having cancer. I’m not thankful for cancer. Having cancer sucks. I am being attacked by from the inside out. I’ve spent more time in the hospital in the past 6 months than the previous 38 years. Chemotherapy is poison and the side effects are severe and frightening; fatigue, nausea/vomiting, weight loss, hair loss, neutropenia. Cancer takes from you your pride, your energy, your confidence. It’s not much different than the abuse of the past: cancer can bring people together and tear people apart.

Last week I learned that my best chance for surviving this is a stem cell transplant and even then the cancer will most likely eventually come back. That’s the reality. Yesterday I spent hours crying on the bathroom floor, and then I got angry and threw a water bottle at the wall and screamed, “why me” into a pillow. Last night I was unable to sleep as my cancer ridden body tries to fight off another infection and I alternate between sweating and chills.

This morning my pelvis, hips, back, and chest are throbbing in excruciating pain as my body tries to produce white blood cells in mass quantities…wow! That hurts. But the sun is shining and I am blessed to have family and friends who reach out with love and support and truly make days like yesterday bearable. I don’t know what today will bring, what the future will hold, or if I will even have one – yesterday wasn’t a good day, and I would be lying if I said I wasn’t afraid, but I’ve already been to hell and back, cancer obviously didn’t get the message…I will win…every time.

Wednesday, March 16, 2011

It's back again

It’s back again ~ that uninvited feeling.
It never asks if it’s welcome.

It just comes back again and again, that feeling of absolute hopelessness.
It wells up inside of you, consumes you, you try to hide it, but you can’t.
The darkness shows in the shallow tears that fill your wretched blue eyes.
The hollow despair is visible in the sardonic smile that sits heavily on your face.
You wonder why it’s there…
You wonder if it will ever end…
You want to scream and cry and rant and rave!
You want to run away. You want out of this life! You want a better one!
A life without all of these tears! A life without the fears!
You want a life without pain and disillusionment…
One with love and not lies…
But there is no out.
So you sit…and you wait…
And it hurts…and it’s lonely…
And there’s pain and there’s fear
Because there is no out…
There’s only ‘this’…

Sunday, March 6, 2011

The end of my world as I knew it

Hello? Is there anybody out there? Just nod if you can hear me…is there anyone (still) home. Okay – enough with the Pink Floyd already. So if no one is out there – I understand since it’s been, oh, just over four months since my last post here. Wow – I feel like I should re-introduce myself, something like, Hi, I’m Grace, I’m a mental patient, and it’s been just over four months since I last wrote here on my blog. Not that anyone has been searching for me, or even read my blog…I dunno…but it was cathartic to write, so I’m hoping that will be the case today, too. We’ll see…

So, here goes…

This is hard to write – probably why it’s gone unwritten for four months. I started writing this blog as a way to write about my mental health *worries* and *therapy* troubles, and “stuff”. Well, “stuff” has evolved. “Stuff” has taken the form of a plama cell gone wrong and evolved into cancer. Yeah, the last post I wrote, when I said something wasn’t right, well, something was very wrong. Nine days after I wrote that last post, I was diagnosed with cancer, bone marrow cancer.

Did you know that they now tell you that stuff over the phone? Talk about crazy? I was driving when I got the call…on my way to my office! And the doctor was all, “Um, yeah, Grace, we got your test results back, and there is cause for concern.” Yes, he said “cause for concern”. There was no, “Are you in a place where you can talk?” or anything like that, he was just calling to “deliver the news: Congratulations, you are the proud new owner of bone marrow cancer: Go, Fight, Win! Okay, he was more diplomatic than that, I joke…but seriously, you tell someone over the phone they have cancer? So after the doctor tells me that I will need to be referred to a hematologist oncologist, and he’ll have the nurse call me with some referrals… I somehow make it to my office and close the door.

My ears are ringing and I think I may vomit but I don’t. I sit down and put my head down because nothing feels real and my first thought was: I need my grandma. But my grandmother is dead so I can’t call her. I started to call a friend of mine but suddenly everything felt so loud and overwhelming I hung up before she answered. What was I going to say to her anyway – I couldn’t say the word cancer out loud and I didn’t want to sound needy and pathetic. Or afraid.

So I called the therapist. She knew I had been having health problems, she knew I had been having tests done, she wouldn’t be surprised to hear fear in my voice, and I didn’t know who else to call. It was the middle of the afternoon and I didn’t expect her to answer the phone anyway. I could leave her a voicemail and try to compose myself to speak coherently by the time she called me back. She answered. I tried to squeak out the words, “I have cancer.” I don’t know how successful I was since she kept asking me to speak louder…slower. Finally I told her that I would email her and we hung up.

It’s funny, looking back, as I write this now, tears welling in my eyes, it feels as though I am reliving it again. You never know the day you’re world will change forever, it’s a day that starts out as any other day; you get up, tired from not getting enough sleep, shower quickly, dress the kids and get them off to school. You check your calendar as you stand in line at starbucks and nod your head when offered that extra shot of expresso…you need an extra kick to get through this day, for sure. And then in the middle of the day your phone rings and your life takes a dramatic change when you learn you have a rare bone marrow cancer. And what you thought was *body-memories* (pelvic/hip pain) for the past two years, wasn’t “all in your head” it was really plasma cells in your bone marrow are on a rampage; multiplying and squeezing out your red blood cells, it was cancer ravaging your body, in real life, not memories of your step-father ravaging your body from when you were a child.