Friday, September 24, 2010

Current Update


School started. Tamoxifen started. Hot flashes & night sweats changed after surgery & seemed to be getting worse in a way but shorter in duration. Then the Tamoxifen started and now I seem to be sweating all the fucking time. Can't tell what's from what. I get random nerve pains in my chest, not even near the stitches, and I'm always tired. When I'm not hot I get chilled because I'm covered in sweat, and I get woken up a lot and never feel like I've slept enough. There's this weird pressure on my skull but it's not really a headache, just pressure, tightness, and my mind is in a fog a lot. My eyes don't focus on certain things and I feel a little bit lost in space. But for some reason I seem to know what I'm doing & what I'm saying. The neuropathy is ok one day and awful the next. Yesterday it was so uncomfortable walking; I can't wear closed toe shoes without it feeling odd and the numbness goes up my leg. It's worse on the left. I get Reflexology next week to see if that will help, plus an herb specialist who might be able to help me get rid of hot flashes. And I'm attempting to switch Oncologists because mine is not considerate of my needs and my feelings. Maybe it seems weird to switch after chemo's over, but I have to be with this doctor for 5 years or more so I think it's best to change.
I'm getting hot writing this & need a break. So that's my update today... oh, and I feel odd that it's been exactly 2 years since Louis died and this is where I'm at: so much has happened in those two years it seems more like it's been 100. I miss him.

Shock and Awe

As I move away from having cancer and into this unknown space of surviving it, I feel dubiety toward the entire situation. I honestly look back and think: Did that really happen? Have I really been through this? If I think too much about how it has happened to me I feel as though I may begin crying hysterically and never stop, so I have been distancing myself; discussing it superficially with most people and avoiding relating anything directly to how I feel about it. I only have one therapist so I should just let it out to her and shut it off around everyone else; I don’t think anyone else really wants to hear about it or deal with it. The thing is… I want to talk about it-- with a friend or family member, someone, but I don’t know who would want to listen so I just hold it in, suck it up, and smile. Not that there is anything wrong with smiling, but I could use a good cry and a nice shoulder to cry on. I had the shock of a life time and now I'm at that point where my jaw is dropped & I'm looking at it as if I just saw Godzilla walking through Time's Square or something. I need to work out these emotions and talk out how I feel but I don't usually trust anyone enough to do that & those I do trust, well...
Maybe making this play will be what helps. We shall see...

Saturday, September 11, 2010


It’s an encompassing of fears and shivers;
Something tightening around flesh like an inflatable sleeve:
Compression and decompression;
Depression and de-depression?
Tightness, shiver, cold, hot, burning, nerves pulling, quaking, smells surround-
Engulfed in apprehension,
Like flames of fire, flames coming off of lava that runs through
Veins and burns off in huge sweats:
Nights lying wet and cold; freezing in perspiration,
Alone and knowing it.
Terror of the unknown, what is next and where to go,
Worry, fear, indecision, loneliness, tension, suspicion, paranoia;
Cancer: it eats away at you like a parasite on your sanity.

Friday, September 10, 2010

In Response to Dennis's Comment...

This is my response to the comment my cousin's husband posted on my entry entitled "Religion". I find that religion was always a constant battle in my family but that it's not about the religion as much as it is about the inflicting beliefs on each other, e.g., anti-gay marriage, people who hate Muslims because of 9/11, using stereotypes to base judgments of certain religious groups, etc. My orginal post (read it) was about me & my fears and experiences in dealing with cancer as a non-religious person.

Dennis- First of all I don't think you understand that this blog is intended for me to express the feelings & thoughts I experience during my cancer. You may consider yourself rational but I have never believed anyone can be truly rational and still believe in any god. How do I seem intolerant of others? Everything I stated here is how I felt & that I worried I might fall into some belief system that goes against everything I've ever believed in simply to gain comfort. The whole point was that I was raised with some idea that there was a god but I never agreed with it, and there's no reason I should. I have survived cancer and fought my ass off on my own-- with no religion or god and without my family nearby, especially without my mother. I don't feel like you read what I wrote as anything besides something going against your religion. I respect people have religion & I stated clearly that I understand humans need comfort, but that I have discovered time and time again, even after cancer, that I do not subscribe to that and that I do not need to. That is mine, and that belongs to me. Of course I have issue with organized religion and with certain things that people preach in the name of god or jesus, like intolerance toward gays, or people who hate a certain religion based only on one version of it. If you believe in what Jesus taught about loving everyone than you would not support discrimination against anyone even if you don't agree with their lifestyle. These are the issues I have with religions, not necessarily religious people. As far as being religious, that's individual and not up to me. I stated above that I am content with my understanding that the universe happened at random and there is no plan. I get that. You can believe what you want and it does not matter to me, but you really do not have the right to judge how I feel about my beliefs or how I state these feeling based on my experience with cancer. I was raised Catholic and chose to believe differently, as did both my brother and sister; as do so many others. It goes both ways. Bad things happen and people "find God" and I feared I might, but I did not. It would be against my nature. That is mine and no one has the right to diminish it. Nothing in what I stated is expressing intolerance. Intolerance would be me trying to take away your rights or demean what you do in your life because I do not agree. I respect you regardless of what you believe in.

Tears like rain down my face

I wrote this poem today. Two days after surgery. I feel really melancholy; maybe it's the weather. I want to cry but I want to sleep. I yearn for warmth right now; it's very cold today. I yearn for love & comfort. I want to cry without being judged by anyone & curl up in the arms of someone I love. I don't really have that person yet but lately I've been thinking about someone I can't quite get off my mind. And I'm frustrated that my family has forgotten me. I could have died & only John called. Maybe the rest of them are dead & no one told me. Maybe I'm just sick of not saying how I really feel. What are they waiting for- my funeral!?! I don't care anymore that they are busy- I had fucking cancer in my tit & they cut it off!And I'm still standing & I'm still trying to be someone. I feel like my brother Bill is retroactively blaming me for my mom being dead; like I got cancer to steal her thunder from dying of it. Yep, cancer's so gawd damn fun & all! He couldn't even say the word "chemo." My sister can only send me tiny messages mostly from her kids. If she had cancer I'd do more; I'd do anything. Is that just me? I'd be there for her; I'd be there for any of my friends if they got this. People I hardly know are taking better care of me. How is this not strange? I wonder if they even think of me without being prompted.
Anyway, here's the poem. I deserve the love I want. I really do.

Tears like rain down my face
I wish you were here to hold onto me
The need for comfort is so deep
Feeling chained to myself and desolate
I know you smell the way I want everything to be
I know you are comfort for me
Please let me cry and don’t judge what I say
I’ve been waiting for you to be with me all day
The clouds and the wind cut low in my bones
I need for you to prove that I’m not alone
Come find me, wipe the tears away,
And be mine now and forever
I deserve you… whoever.

Monday, September 6, 2010

In The Middle

People I know see me and they seem uncomfortable, like all we can talk about is cancer. These are the younger people. They say, “Wow, so you’re done. Great.” And then the fidgeting begins. It’s frustrating to me that no one can talk about anything else. I try redirecting the conversation so I ask about plays they’ve read; try to talk about school, or ask about what they’ve been doing lately. I’m Irish and this “talk around everything” game comes naturally to me. Plus, if I get too into the cancer/chemo shit I either get angry about it or get sad. I mean, who wants to hear that I thought about killing myself for half the summer? No one, not even you.

Does everyone think I’m done? I do have surgery in four days. I’m not done. I was trying to figure out why I can’t develop a scene for my play. I can see what I want it to look like, and I have all these ideas for scene transitions, but I can’t write a scene. I tried asking a friend for advice or to at least test the waters with talking to her and getting some of this shit off my chest, but she was unreceptive. Everyone thinks it’s over so they can just act like I’m healing now and there’s nothing wrong with me anymore. I know it’s not over. I emailed someone who has often been the voice of reason for me this year, and asked for advice. He pointed out without beating around the bush that I’m still going through it; I’m in the middle of it. The funny thing is that I really am directly in the middle. I felt a transition about a week or so ago, like the haze lifting. But that haze wasn’t lifting to show me total clarity, it was lifting to show me the next half of my journey.

I have this excitement and nervous energy for school starting; I really want to experience it fully, but I wish I could get a vacation first (this summer does not count). I’m also desperately yearning to be lying on Christopher’s bed and be allowed to cry again. No one else in my life allows me certain acceptances like he does. I’m also yearning to sit in James & Shannon’s living room with their doggies jumping on me, eating vegan food, and talking about whatever is going on in their lives. And if I cry around them they won’t mind. And maybe most of all I long to see my niece Ashelei & my nephew Hawthorne. I haven’t seen Hawthorne in a year and he just turned three. Not to say I don’t want to see my other niece and nephew, but Ashelei and Hawthorne are fearless people; they both climb all over shit and don’t worry all the time. I was always worrying all the time. I want to be around fearless youth! Plus I told Ash that her hugs will help heal me so I’m really looking forward to her hugs. I miss home which is weird since I always hated it there. I miss the dolls and the figurines my mom left behind, and I miss the dust that covers every damn thing in that house. I even miss that musty-fart-urine smell that fills most of the rooms there. There really isn’t an inch of that house that doesn’t remind me of my mom. I miss her. I miss her more than ever now because she would talk to me if she were here, she would call me. No one else calls me. My mom would be here, or she would have been for a while anyway. I miss adults. I like talking to people who are my age. Well, older really since I’ve never actually been my age. I’ve always looked younger and acted older. I was born at the age of ten, meaning when I was born I was basically a ten year old. At three or four I knew I was smarter than my mom and I was confused why that was. She just never thought outside the box; her mind was convinced of certain things and she rarely changed her mind.

I have the opportunity, after going through this life altering experience, to literally alter my life. I want to and I say I’m going to, but here I am thinking I have to rush to let go of the cancer experience I just had, when in reality I am still having it. I did the same thing when my mom died. I tried to be okay and only cry the first few weeks. After that I said I should be over it, right? Then I realized it was only April and she had died in February. It hasn’t even been three years and it is totally okay for me to still be sad about her death. It’s also okay for me to be sad about my getting cancer; and to be angry about it; and to want to talk to someone about how I feel without them giving me advice or judging me for what I say or how much I speak. If I ask for advice then go ahead, but otherwise maybe you should just sit back and listen because I was already older than my age before, but now I feel like a wise old owl, and I may say something really fucking brilliant and if you miss it it’s your loss.

I have recently rediscovered a childhood joy of mine: swimming. I only have three days left to do it until I can’t for a long time after, but I plan to swim all three days until surgery. It’s given me another purpose besides acting. I’m seeing that I have to find a way to embrace my loneliness and accept that some people are friends but don’t need to be with me all the time, and that some people are just colleagues and we can work together and have fun, but that’s it. It’s okay to be alone. I am learning to be okay being alone because it makes being with other people that much more enjoyable.

This experience has not killed me, but it is not over by a long shot. I’m still in the middle of it, and that’s okay too. I’m at a transitioning point and as I transition I need to heal. I would like to make understanding a part of my healing. So, even though most people do not understand that I’m still in it, I understand that they don’t get it, but I’m okay with that. Everyone is doing as much as they can the way they can. I do wonder how my getting cancer really effected my friends and family. I’d love to know.

Tear Drop

The way that it droops when I lie on my side,
Trying to reach the other one,
It looks like a tear drop about to fall…
It will never look exactly that way again.

Who will I be when I wake up?
Will I still be me?
I wonder now if I am the me I was before.

I feel different. I feel lost in a familiar scene.
I feel as though I totally belong here but I’m early.

Does anything make any sense anymore?

Saturday, September 4, 2010


Recently someone made fun of me for talking a lot. My initial reaction was a mix between “yeah, fuck you!” and crying. I just laughed it off and said “well you try being alone for four months in almost total solitary confinement feeling worse than you’ve ever felt before. You do that & you’ll be starved for conversation too.” Plus the person who said that is a friend – I think- & she was fiddling with her phone for so long I was getting really offended & uncomfortable; what do you do when someone you’re with is fiddling with their phone forever. I hate when people do that when you’re hanging out with them; it’s rude. She claimed she did it because she didn’t want me to talk anymore. So, say that! And, why hang out with me if you know I’m gonna talk? I only hang out with people for the purpose of talking. I mean, what happened to intelligent conversation anyway?

I have been racking my brain to come up with the worst thing about cancer and I’ve discovered that for me it has been the loneliness. Have I said this before? It was like prison and being sick all at once. I thought all these people were my friends but at some point it felt like they forgot me, on purpose or by accident, but either way they forgot me.

A woman in my support group complained that some lady from her kids’ school was coming by too often to see if she’s okay. I told her to send that woman to my house because I’m lonely. I got so depressed not having anyone for four months, that now that I get a person or two to hang out with here or there I desperately want to talk because A) I can’t fucking stand talking to myself for one damn minute longer, and B) Talking stops me from crying which is what I really want to do but I don’t really trust anyone here enough to burst into tears, and I don’t honestly think anyone here cares enough about my problems to want to deal with me crying. Everyone’s got their own fucking problems. I get that. I have no one close enough to really let it out to and my therapy sessions are only an hour. So I just hold it in now and eventually I’ll explode or develop cancer again.

And now I’m afraid to speak. I’m self-conscious again. I haven’t felt like this in years. Why do people do that to each other? Why be so negative and judgmental? So I talk a lot now. I don’t think I talked too much before, but everyone talks. Some days people talk a lot and some hardly at all. I HAD FUCKING CANCER!!!!!!!!!!!!!!!!!!!!! I don’t need to justify why I talk a lot. If you don’t get it then don’t get it but don’t hang out with me expecting that I’m just gonna sit there while you fuck around on your phone. If I wanted to be in my own little corner I’d stay home, but I try daily to reach out to people and more than half the time I get shut down. I really wonder how many of these people would be nice to me if I had never gotten cancer at all.