Tuesday, October 5, 2010

Real and Imaginary

It's 6:30am. I shouldn't be awake. I SHOULD be sleeping in my nice comfy bed, but instead I am on my couch, my cat on my lap, awake, thinking. They call it "Monkey Brain." I call it a pain in my ass. I'd much rather be sleeping and NOT thinking about cancer than unnecessarily awake extra hours TO think about it.
But here I am.
I think it's because my cat decided to sleep on me ALL NIGHT last night. Not that that in itself bothers me, but I think about the nursing home cats that hang out with old people who are about to kick it because the cat senses something and knows they're about to go. Unnerving.
So the cat is right here in my lap purring. I'm slightly creeped out.
I've been thinking more and more about the whole 'lymph node' involvement and what that could mean for me. Also the lack of complete debulking.
It's not fair. Yeah, I'm whining. But it's NOT fair. It's not fair that I've had THIS many surgeries and I STILL have life-threatening cancer. It's not fair that Dr. Arnold at OSUMC gets to spend his days carefree, without cancer and gets to spend oodles of money he makes from cancer patients he probably didn't help a bit. It's not fair that I have to worry all the time about my girls' futures... that they will end up being JUST LIKE those Disney princesses they love- with NO MOTHER.
Do you KNOW how hard it is to answer a 4 year old's questions about death when it's a real possibility? When she asks about the doctors and if they can 'fix' me? And how does someone 'get dead?' She cries at slow songs because she worries about me. How fair is that?

Unfortunately, the reality is that the only me they will know is the on fighting cancer. Surgeries, chemo, surgeries, chemo and so on. Tired, cranki, unable to keep up, getting others to do MY mothering responsibilities because I just can't.
It's bullshit.
I have decided to write a letter to Mr. Arnold, to be sent when I die. It will give him a real piece of my mind. Saying all the things I want to say to him- and I'll be enclosing a picture of my 2 girls for him to keep. So he'll know the children he left motherless. Because, YES, I DO blame him, and oncologists who only saw me as a number or just another body ripe for chemotherapy. None of my oncologists did any research for me. You'd THINK that an oncologist dealing with a rare cancer would be trying further an education, looking for new treatments or maybe a treatment they'd never head of before. Nope. They don't. And if YOU have cancer- don't think for a damn second that anyone is doing anything other than what is Standard Operating Procedure.
"Colon cancer? Wh-h-h-hell, THAT gets IV chemo. Hmmm, appendix cancer? That's, uh, in the colon, sorta, right? Eh, throw that in the colon cancer category, we don't get enough of those cases to worry THAT much about them. Oh, and I WON'T be looking any of this up for further information. Naaaahh. I'm sure that schooling I had YEARS ago gave me all the know-how I need to treat this 33 year old mother of 2 young children JUST like a 70-something with a totally unrelated cancer. Why not? She has good insurance."
Sons of bitches. All of them. Every one who DIDN'T bother for one damn second to look further than my medical record. Every one who didn't do a split second of research into REAL treatments. Every one who just went SOP and didn't bother to educate themselves on the HIPEC or even bother to GO ONLINE AND LOOK A DAMN THING UP. Every one who KNEW about the HIPEC but didn't bother to mention it to me. Every one who knew a diagnosis of PMP but didn't tell me.
Screw you all. I don't have to be nice.

So much for the 'Real' part. Was that real enough for ya?

I was trying to blog last night, but my phone wasn't having it for some reason. I wanted to tell you all about the coolest thing.
I went to Iris' preschool yesterday to pick her up because I'm feeling a bit better and am allowed to drive now (no pain meds). The teacher, Dawn, is wonderful and I almost always end up talking to her for a while every time I am there. She told me yesterday that they pray for me in school every day (it is a faith-based preschool) and that one of the girls there prays for her imaginary friend too. Her Imaginary Friend is Rachel Smith and she has pink hair. Dawn talked to her and asked her if I was her imaginary friend... I didn't hear her say 'yes' but Dawn said she did.
How cool is that? I'm an imaginary friend!
I just HAD to share that. Not too many people get to be an imaginary friend.

My staples come out tomorrow- a couple of them popped which is why there is a small issue with a section of it healing. ick.
At least I won't be dealing withh the damnedable staples anymore.

Well, I guess I'm off to bed to try for another 45 minutes of sleep- if I can get it.


  1. I appreciate the honesty of your posts, and putting your emotions... well,out there. As a cancer care giver, I have always tried to keep my writing postive...although, its hard. And once or twice, I have just cut loose and said, This is how it really is! Rachel, there is nothing I can say to make this any easier for you. Just know that you are not alone. I know your journey is unique to you... but so many others are also struggling with Cancer. It sucks. Sending a cyber hug your way,
    ~Whidbey Woman

  2. Your anger is justified and always being bright and cheerful is not the way it really is. I post on my blog and I am never really free enough to be at all real. It takes courage for you to put it out there the way it really is.

    My cat has taken to sleeping on me. I am not dying; Fall is in the air and he wants to cuddle. My cat is squawking at me right now. He may be the cause of my eventual demise from lack of sleep.

    Joanna Moore

  3. Same thoughts here Rachel...only I'm not gutsy enough to put it all out there. I'm jealous :-) So keep on writing for us all.


  4. I am angry with and for you Rachel. Sometimes there are doctors that truly care and will do the research it takes...other times you get a doctor like Dr. Arnold and, well, he OBVIOUSLY didn't care to do the research. I'm sure your description of how it all went down is pretty accurate. It's a shame that it all comes down to money and time. For crap sakes Dr. Arnold, it's A LIFE!

    I am so proud of you for putting your words in writing for all of us to read. They need to be read and taken to heart so that others can learn what to do if they are faced with the same cancer you are fighting. I only wish your story could make it on to Oprah's desk so she could help get the word out. She's very influential and I bet she could light some fires or help other's know what to do if they are ever in your situation.

    YOU have lit another fire in me to get back on the phone to a couple of my son's specialist that have been putting us off for a little while (for whatever reason). A couple months for a referral is a couple months too long. I will make those calls today.

    You continue to be on my heart and mind just about every day. Sending you hugs from Oregon.


  5. Hi Rachel, I just happened to come upon your blog. My sister has a blog called Cancer Schmancer too. Cancer sure sucks. It has been hard to just see my sister go through her process. I'm sure it is harder to be the patient.

    I'm sorry about your plight with doctors, the pain, your sadness. God knows your plight. How to get through it in the best, most bright way if that is possible. Stay close to him so you can be your best you for your girls. Sending a prayer to heaven for you, love tiesha