In the beginning it’s the feeling of being trapped in questions and bombarded with the unknown. It’s palpable and ever-present; there’s no escape from the not knowing that you can really feel how confined you truly are.
Before the surgery it’s knowing that surgery date is fast approaching and no matter how much you wish away your tumor it’s not going to just up and vanish and soon they will be cutting off your tit and you can’t do anything to change that.
After the surgery it’s the drains. You don’t realize you can’t move the same. I mean, I knew I had less range of motion and I knew I had pain and could potentially bust a stitch, but I had no idea how much I had lessened my movement until I had the drains removed two weeks after surgery and my right shoulder was so sore and felt like it had been pulled out of socket. I felt freed after they were both removed. Even my left arm had been used less. It was a nice relief, but still surprises me how much I hadn’t been doing without even realizing it.
During chemo it’s being attached to that fucking IV pole and that robot machine. I had to take that damn thing with me to the bathroom! Being on AC I was confined to not making plans far ahead (like even an hour) and never knowing how rotten or how not-so-rotten I would feel. Once AC was done it was another sense of freedom knowing nothing could possibly be as bad as that. The Taxol wasn’t as bad, but the pains were pretty awful and I was confined to being at home, or confined to relying on a cane to get anywhere.
With chemo done I feel free. I still have to suffer the side effects of the last treatment, but in two weeks I will see how I feel and it’ll be the first time in a very long time that I won’t be recovering from my most resent treatment. That will be the definitive marker for me that chemo is really done. Even if the pains and neuropathy aren’t entirely gone I’ll still feel free because I’m done!
I am confined again by having to deal with the potential long term side effects, like my fertility, and then there’s the tri-weekly visits for Herceptin that will reunite me with my IV pole and robot. And for five years I’ll be a slave to Tamoxifen. Of course we can’t forget my next surgery in five weeks where I’ll be trapped with the drains again. Here’s hoping that goes by fast and I only have to keep them for one week this time.
There always seems to be an end in sight but each end is also a new beginning. If I can look at all things that end, the good and bad, with the understanding that they are not an end alone but a start to something new, than maybe I can find more happiness in the mundane changes in my life. Cancer was a big wave in my ocean but what little ripples have I been missing?
Saturday, July 31, 2010
I'm Not Her
Am I cured? I asked my oncologist when I would be scanned to make sure there is no cancer left in my body. He said there is no reason to subject me to unnecessary radiation by x-raying me or anything. He says the surgery got all the cancer and the chemotherapy was precautionary. I don’t really care; you can say that all day long I still want actual proof. I mean, take a fucking Polaroid of me and tell me there’s no more cancer—fucking doctors only do as much as they are willing and don’t really seem to have a desire to bend over backwards for their patients. It’s not like it’s my life at risk or anything… oh, wait, it IS my life!
My friends are asking me when I’ll know that I’m cancer-free, but I have no answer for them. I don’t want to say I am because I really don’t know. There are things inside my body that I cannot control and that I cannot oversee and therefore I have no idea if I’m okay or not. What if my cells are all pissed off that I killed them and they are plotting against me? My uterus and I have been battling it out for years about the damn baby situation, so maybe she’s out to get back at me for potentially ruining that one for good. I keep saying I did chemo because my mom didn’t and she died, but I could still die and that fear is very real. I want something to show that I’m okay; to show that I fought against cancer. I want that Polaroid or a certificate of completion; something to show I suffered from chemo and fought like a warrior, and that I survived it. A fucking trophy would be nice. Anything! I mean little kids get red ribbons after they participate in races and here I am: far more than just a participant and I get what? I feel like I should be wearing a t-shirt that reads: I survived a mastectomy and chemo and all I got was this lousy t-shirt. But I didn’t even get a t-shirt! Is it too much to ask for a parade? At the very least my oncologist could have given me that participant ribbon on my last day of chemo but all he did was say I’ll be fine and the light can be seen at the end of the proverbial tunnel, etc etc, etc.
Basically what I heard him saying is that “we just had you suffer on chemo for 4 months because we have to and we don’t really care that you feel like shit or need reassurance.” And, in addition “if we are wrong and missed something or the chemo didn’t work we’ll find out next year when we do tests and mammograms and discover you are terminal and there’s nothing else we can do, or we’ll subject you to more chemo and tprture you more instead of trying to stop you from getting cancer again by paying attention to what your body is doing before the cancer develops.” Western Medicine is beyond belief to me! They are simply treating a disease in my body without concerning themselves with HOW it got there in the first place. I’m 34 and I got breast cancer. I was the healthiest person I knew, I ate well, I exercised, I drank water, hardly ever drank alcohol, stopped doing drugs years ago and I hadn’t smoked in years. My only vice was Pepsi and I think it’s safe to assume Pepsi alone did not cause my cancer. How can all these things be ignored? Why can’t I be treated like a person who has certain medical issues all her life and have those factored into why I might have developed cancer at such a young age? The doctors are ignoring half of my medical history. No, more than that! Could my stomach problems have contributed to my cancer? Could my stress, my anxiety, my hormonal issues have anything to do with it? Could my migraines or bi-polar disorder be connected? Maybe someone’s doing a study of this but why isn’t my oncologist at all concerned with it? No, he’s not. Probably because he gets paid no matter what he does and it’s easier for him to follow the standard protocol and tell me I’m going to “live happily ever after” than put any extra effort into treating me like I’m an individual with differing characteristics from other patients.
Oncologists can prescribe this shit-fuck medicine left and right but they never have to take it. They give it to us and write down our symptoms and if we bitch enough about something they’ll give us another medicine to combat the side-effects of the first one. They don’t need to know anything about the interconnectedness of our bodies and how maybe my intestinal issues that reacted to my monthly hormonal changes may have been a direct factor in my forming a cancerous lump in my breast at only 33 years old. They don’t need to know my diet or suggest I eat this or that and don’t eat this or that because all patients are the same. Yet we keep discussing how most of us who are on chemo react differently to the meds and no one can say for sure that we’ll respond one way or another—so why can’t we all be treated as individuals instead of being clumped into categories and treated the same way no matter what our history, diet or tolerance for pain is? Maybe if the oncologist had ever taken AC they’d be more understanding of how it feels.
I’m not her; I’m me; an individual with different circumstances and a different body. That should matter but it doesn’t. How can I not be angry about that? There’s no guarantee I won’t get cancer again. In fact it’s rather likely that since I got it so young I will get it again at some point in my life. It could be next year or in ten years, or in twenty, but there’s no way of knowing, and since the doctors aren’t pushing to uncover the WHYs and HOWs of what’s causing breast cancer in young women as individuals how can we ever expect to get any better treatment or find cures at all? I don’t honestly believe there are any scientists looking for the cure for cancer because I think it was already discovered and whatever it might be is so simple that it won’t make anyone any money so it’s being hidden in some secret vault somewhere and no one will ever tell what it is. Maybe we should check the Disney vault!
My friends are asking me when I’ll know that I’m cancer-free, but I have no answer for them. I don’t want to say I am because I really don’t know. There are things inside my body that I cannot control and that I cannot oversee and therefore I have no idea if I’m okay or not. What if my cells are all pissed off that I killed them and they are plotting against me? My uterus and I have been battling it out for years about the damn baby situation, so maybe she’s out to get back at me for potentially ruining that one for good. I keep saying I did chemo because my mom didn’t and she died, but I could still die and that fear is very real. I want something to show that I’m okay; to show that I fought against cancer. I want that Polaroid or a certificate of completion; something to show I suffered from chemo and fought like a warrior, and that I survived it. A fucking trophy would be nice. Anything! I mean little kids get red ribbons after they participate in races and here I am: far more than just a participant and I get what? I feel like I should be wearing a t-shirt that reads: I survived a mastectomy and chemo and all I got was this lousy t-shirt. But I didn’t even get a t-shirt! Is it too much to ask for a parade? At the very least my oncologist could have given me that participant ribbon on my last day of chemo but all he did was say I’ll be fine and the light can be seen at the end of the proverbial tunnel, etc etc, etc.
Basically what I heard him saying is that “we just had you suffer on chemo for 4 months because we have to and we don’t really care that you feel like shit or need reassurance.” And, in addition “if we are wrong and missed something or the chemo didn’t work we’ll find out next year when we do tests and mammograms and discover you are terminal and there’s nothing else we can do, or we’ll subject you to more chemo and tprture you more instead of trying to stop you from getting cancer again by paying attention to what your body is doing before the cancer develops.” Western Medicine is beyond belief to me! They are simply treating a disease in my body without concerning themselves with HOW it got there in the first place. I’m 34 and I got breast cancer. I was the healthiest person I knew, I ate well, I exercised, I drank water, hardly ever drank alcohol, stopped doing drugs years ago and I hadn’t smoked in years. My only vice was Pepsi and I think it’s safe to assume Pepsi alone did not cause my cancer. How can all these things be ignored? Why can’t I be treated like a person who has certain medical issues all her life and have those factored into why I might have developed cancer at such a young age? The doctors are ignoring half of my medical history. No, more than that! Could my stomach problems have contributed to my cancer? Could my stress, my anxiety, my hormonal issues have anything to do with it? Could my migraines or bi-polar disorder be connected? Maybe someone’s doing a study of this but why isn’t my oncologist at all concerned with it? No, he’s not. Probably because he gets paid no matter what he does and it’s easier for him to follow the standard protocol and tell me I’m going to “live happily ever after” than put any extra effort into treating me like I’m an individual with differing characteristics from other patients.
Oncologists can prescribe this shit-fuck medicine left and right but they never have to take it. They give it to us and write down our symptoms and if we bitch enough about something they’ll give us another medicine to combat the side-effects of the first one. They don’t need to know anything about the interconnectedness of our bodies and how maybe my intestinal issues that reacted to my monthly hormonal changes may have been a direct factor in my forming a cancerous lump in my breast at only 33 years old. They don’t need to know my diet or suggest I eat this or that and don’t eat this or that because all patients are the same. Yet we keep discussing how most of us who are on chemo react differently to the meds and no one can say for sure that we’ll respond one way or another—so why can’t we all be treated as individuals instead of being clumped into categories and treated the same way no matter what our history, diet or tolerance for pain is? Maybe if the oncologist had ever taken AC they’d be more understanding of how it feels.
I’m not her; I’m me; an individual with different circumstances and a different body. That should matter but it doesn’t. How can I not be angry about that? There’s no guarantee I won’t get cancer again. In fact it’s rather likely that since I got it so young I will get it again at some point in my life. It could be next year or in ten years, or in twenty, but there’s no way of knowing, and since the doctors aren’t pushing to uncover the WHYs and HOWs of what’s causing breast cancer in young women as individuals how can we ever expect to get any better treatment or find cures at all? I don’t honestly believe there are any scientists looking for the cure for cancer because I think it was already discovered and whatever it might be is so simple that it won’t make anyone any money so it’s being hidden in some secret vault somewhere and no one will ever tell what it is. Maybe we should check the Disney vault!
Thursday, July 29, 2010
July 29th, 2010
I am done, Done, DoNe, DOne, dOne, DONe, dOnE, dONe, donE, DoNE, DOnE, doNe, dONE, enod (that's "done" backwards), finished, through with, c'est fini, klaar, من خلال ,مع, abgemacht, fatto, feito, yhecho, とを, sa pamamagitan ng, läpi, до конца с,
과를 통해, and whatever done is in Gaelic (& all other lanuages I couldn't get a google answer for) DONE-DONE-DONE-DONE-DONE with chemo!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
과를 통해, and whatever done is in Gaelic (& all other lanuages I couldn't get a google answer for) DONE-DONE-DONE-DONE-DONE with chemo!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Wednesday, July 28, 2010
Body of Work
This is a body I live in. Skin, blood, bones, veins… is that all? Everything we are in our lives; all we learn, all we do, and all we acquire is for what?
I am a talented actor. I am a very good writer. I am funny and have lots of great ideas. If I died tomorrow what would any of that matter?
I am also a renowned failure at a lot of things, primarily relationships. My career. Ever having kids…
If my body fails, it really doesn’t matter that I am good at acting or bad at love. It won’t make a lick of difference that I can build the coolest doll house or tie cherry stems in my mouth. Death is something we have no control over.
I think the worst part of having cancer is the lack of control. My life was mine for about 2 years and then cancer came along. I can let the doctors cut off my breast and inject me with horrible poisons in hopes that it will kill all the cancer cells, but in reality there is the chance that it won’t work and I will die.
We all die. That’s really the only guarantee in life. As a kid it’s all I wanted. I started my suicide attempts at age 7. I never feared death. No, I feared clowns and mustard, but death was nothing scary. Actually, I wished for it.
One day just a few years ago I stopped fearing mustard (well, sort of) and I started liking life. Unfortunately the more I liked life the more I feared death. Finding a marble in my breast really made me see how much I love life. But I also realized how much I fear death. And there it was: looking me right in the eye.
I don’t want to die at 34. Not at 44. Not at 54 or 64. I want to at least out live my mother by a few years. Is 75 too much to ask for? But I have no real control over it. I could win the battle with cancer and never get it again but get hit by a bus next year, or shot by some nut job, or get bitten by a rabid dog. No way of knowing. And the worst part, besides how it will hurt the people who give a shit about me, is that when I die I won’t be able to write about it after.
Maybe I should write my own obituary now. Maybe I should have a funeral for myself before I die. “Put the fun back in funeral” was one of my favourite bumper stickers on my car in high school. That and “Fuck Censorship.” Ah, memories…
It’s the memories that people will have of me that… well, they will be here after I’m gone. If anyone cares to remember me. I haven’t left anything behind but my writing. My acting isn’t really on tape anywhere. Well, I guess somewhere but my best moments were on stage, un-filmed and gone forever except for the memories in the minds of those who watched.
I can only hope that I’d be able to give my writing to someone I trust and that that person would write about me after I’m gone. They could use all my words, add their own… I trust like 4 people on earth but I think I know who I’d go to for that. Of course, if I died suddenly how would that person know?
I thought about writing a will. I thought about leaving personal notes for people to open “in the event of my death.” It is a good idea I suppose. Otherwise all this writing is just words on paper that will get deleted or burned or lost. And really, I am a good writer and this stuff should be saved. Well, most of it. Maybe the emo poetry from high school can be burned.
Burned. It seems like our society has only given us so many options when certain situations arise. Death, for example: We get burial or cremation. Becoming a mummy isn’t an option anymore, is it? I choose cremation. I want my ashes split up amongst my family and friends and spread all over the world, preferably near bodies of water and in places I’ve never been to or places I really loved.
Being buried is creepy. Being encased in that coffin. Why is there a pillow in a coffin? If you are dead you don’t need a comfortable head rest. It’s just money. Greedy funeral homes. The one we used when my mom died sold book markers and videos of my mother. I made a video for her that was better and free. Assholes showed theirs and put it up on their website for 50 bucks.
After we buried my mom I couldn’t go back to that cemetery for months. I waited until Mother’s Day and the head stone was done. I knew my family would be there too but they took forever to arrive I nearly crawled out of my skin being there alone, waiting for them. See, I knew that if I was there by myself I would try to dig her up. It may sound creepy, I don’t care, it’s true. I really would have. No shovel, just my hands. She’s trapped in that fucking coffin six feet under and she can’t breathe under there!
Okay, I know, she’s dead. I know. No, really, I do. But she’s not rotting away and becoming one with the earth; she’s probably fairly well preserved and I hate knowing that. If she’s not coming back ever… which I still have trouble dealing with… then I need her gone completely. I mean, not the memories but the physical being part. It may not make sense, but neither does my constant hope to see her again and tell her about my cancer and how much I miss her and that I live in New York now and I’m really trying to be an actor. “Hey, Mom, it’s not just a 20 year phase; I really am gonna do it. And look: I’m bald!”
But it’s just her body down there. I know. It doesn’t matter; just a body. We carry it around for however long we live and we destroy it with things like alcohol or too much sun; we spend too much time concerning ourselves with how other people see us that we don’t allow ourselves to let loose and have fun because we don’t want to look ugly; we spend tons of money to improve our looks with hair styles and make-up and fancy clothes… for what? To end up six feet under in a satin lined coffin with a fluffy pillow under head that we can’t even enjoy. Or poured into a metal urn or wooden box or something and set on the mantel of aunt so-and-so or whoever was lucky enough to be given possession of our ashes. No, I’d rather be lost at sea or have my body left in nature to decompose or be eaten. At the very least I’d like to become ashes flying in the wind.
Is it weird to say I kind of envy the victims of 9-11 because they burned up? I mean, I don’t envy that kind of death; it was probably horrific, but at least it saved them from having to be buried in that coffin.
I hate confined spaces. Even in death I want to be set free. But not until I’ve passed 75 and really lived. Otherwise everything I have suffered will be for… ????????????????
I am a talented actor. I am a very good writer. I am funny and have lots of great ideas. If I died tomorrow what would any of that matter?
I am also a renowned failure at a lot of things, primarily relationships. My career. Ever having kids…
If my body fails, it really doesn’t matter that I am good at acting or bad at love. It won’t make a lick of difference that I can build the coolest doll house or tie cherry stems in my mouth. Death is something we have no control over.
I think the worst part of having cancer is the lack of control. My life was mine for about 2 years and then cancer came along. I can let the doctors cut off my breast and inject me with horrible poisons in hopes that it will kill all the cancer cells, but in reality there is the chance that it won’t work and I will die.
We all die. That’s really the only guarantee in life. As a kid it’s all I wanted. I started my suicide attempts at age 7. I never feared death. No, I feared clowns and mustard, but death was nothing scary. Actually, I wished for it.
One day just a few years ago I stopped fearing mustard (well, sort of) and I started liking life. Unfortunately the more I liked life the more I feared death. Finding a marble in my breast really made me see how much I love life. But I also realized how much I fear death. And there it was: looking me right in the eye.
I don’t want to die at 34. Not at 44. Not at 54 or 64. I want to at least out live my mother by a few years. Is 75 too much to ask for? But I have no real control over it. I could win the battle with cancer and never get it again but get hit by a bus next year, or shot by some nut job, or get bitten by a rabid dog. No way of knowing. And the worst part, besides how it will hurt the people who give a shit about me, is that when I die I won’t be able to write about it after.
Maybe I should write my own obituary now. Maybe I should have a funeral for myself before I die. “Put the fun back in funeral” was one of my favourite bumper stickers on my car in high school. That and “Fuck Censorship.” Ah, memories…
It’s the memories that people will have of me that… well, they will be here after I’m gone. If anyone cares to remember me. I haven’t left anything behind but my writing. My acting isn’t really on tape anywhere. Well, I guess somewhere but my best moments were on stage, un-filmed and gone forever except for the memories in the minds of those who watched.
I can only hope that I’d be able to give my writing to someone I trust and that that person would write about me after I’m gone. They could use all my words, add their own… I trust like 4 people on earth but I think I know who I’d go to for that. Of course, if I died suddenly how would that person know?
I thought about writing a will. I thought about leaving personal notes for people to open “in the event of my death.” It is a good idea I suppose. Otherwise all this writing is just words on paper that will get deleted or burned or lost. And really, I am a good writer and this stuff should be saved. Well, most of it. Maybe the emo poetry from high school can be burned.
Burned. It seems like our society has only given us so many options when certain situations arise. Death, for example: We get burial or cremation. Becoming a mummy isn’t an option anymore, is it? I choose cremation. I want my ashes split up amongst my family and friends and spread all over the world, preferably near bodies of water and in places I’ve never been to or places I really loved.
Being buried is creepy. Being encased in that coffin. Why is there a pillow in a coffin? If you are dead you don’t need a comfortable head rest. It’s just money. Greedy funeral homes. The one we used when my mom died sold book markers and videos of my mother. I made a video for her that was better and free. Assholes showed theirs and put it up on their website for 50 bucks.
After we buried my mom I couldn’t go back to that cemetery for months. I waited until Mother’s Day and the head stone was done. I knew my family would be there too but they took forever to arrive I nearly crawled out of my skin being there alone, waiting for them. See, I knew that if I was there by myself I would try to dig her up. It may sound creepy, I don’t care, it’s true. I really would have. No shovel, just my hands. She’s trapped in that fucking coffin six feet under and she can’t breathe under there!
Okay, I know, she’s dead. I know. No, really, I do. But she’s not rotting away and becoming one with the earth; she’s probably fairly well preserved and I hate knowing that. If she’s not coming back ever… which I still have trouble dealing with… then I need her gone completely. I mean, not the memories but the physical being part. It may not make sense, but neither does my constant hope to see her again and tell her about my cancer and how much I miss her and that I live in New York now and I’m really trying to be an actor. “Hey, Mom, it’s not just a 20 year phase; I really am gonna do it. And look: I’m bald!”
But it’s just her body down there. I know. It doesn’t matter; just a body. We carry it around for however long we live and we destroy it with things like alcohol or too much sun; we spend too much time concerning ourselves with how other people see us that we don’t allow ourselves to let loose and have fun because we don’t want to look ugly; we spend tons of money to improve our looks with hair styles and make-up and fancy clothes… for what? To end up six feet under in a satin lined coffin with a fluffy pillow under head that we can’t even enjoy. Or poured into a metal urn or wooden box or something and set on the mantel of aunt so-and-so or whoever was lucky enough to be given possession of our ashes. No, I’d rather be lost at sea or have my body left in nature to decompose or be eaten. At the very least I’d like to become ashes flying in the wind.
Is it weird to say I kind of envy the victims of 9-11 because they burned up? I mean, I don’t envy that kind of death; it was probably horrific, but at least it saved them from having to be buried in that coffin.
I hate confined spaces. Even in death I want to be set free. But not until I’ve passed 75 and really lived. Otherwise everything I have suffered will be for… ????????????????
Saturday, July 24, 2010
Warrior
a woman i met recently who has been going through cancer as well wrote something about being in a sort of battle or random bombing, rather, and the fact that she lost body parts. it was interesting to read that just days after another group of woman in the same boat were all discussing the term "survivor" and saying "so what am i if i don't survive? a loser?" so in response to the idea we were coming up with better terms for it. we are fighters, yes, that's good, but what's a great vaginal anthem? Bang! Bang! I am the warrior. Yep, Scandal. I love that song! Ok, it's a love anthem but it works.
we're not survivors, we are warriors! I want that on a t-shirt!
we're not survivors, we are warriors! I want that on a t-shirt!
Thursday, July 22, 2010
Screaming Down.
Wake up.
Cry.
Stretch.
Cry.
Forgotten
And
Left
For
Dead.
Why?
Try
To
Get
Distracted.
Cry.
Try
To
Go
To
Sleep
Cry.
Tomorrow
I
Will
Scream.
Cry.
Stretch.
Cry.
Forgotten
And
Left
For
Dead.
Why?
Try
To
Get
Distracted.
Cry.
Try
To
Go
To
Sleep
Cry.
Tomorrow
I
Will
Scream.
Monday, July 19, 2010
Oh, Menopause
I wrote a song to the tune of Danny Boy. It's only the first verse. I lost energy after that :)
Oh, menopause, hot sweats, hot sweats are killing me
From top my head down limbs then ‘cross my side
The city’s hot and all my ovaries are dying
They must go and my tears I’ll try to hide
They might come back when I move from the ghetto
Or when the streets are freezing at 10 below
‘Cause I’ll be here desperately seeking airflow
Oh, menopause, oh menopause, I hate you so.
Oh, menopause, hot sweats, hot sweats are killing me
From top my head down limbs then ‘cross my side
The city’s hot and all my ovaries are dying
They must go and my tears I’ll try to hide
They might come back when I move from the ghetto
Or when the streets are freezing at 10 below
‘Cause I’ll be here desperately seeking airflow
Oh, menopause, oh menopause, I hate you so.
Ground Me
I wonder where you are
In the world there are so many
People crammed into tiny spaces
And I keep wondering where you are.
I am here
I am floating on the air like a feather now
I think I was once a stone in the water,
Somewhere in a shallow river,
But I came out and I started floating in the air
Like a feather
I hope you can find me when you need to
I am hoping that you’ll
Catch me as I am floating;
That the breeze isn’t too strong and you miss me flying past you.
Maybe you have no hands to reach out for me
Maybe you used to fear water and never looked in the river,
And now you fear heights and I am floating too high
So maybe I should float lower
Or perhaps I should become something else
But what should I be?
In the world there are so many
People crammed into tiny spaces
And I keep wondering where you are.
I am here
I am floating on the air like a feather now
I think I was once a stone in the water,
Somewhere in a shallow river,
But I came out and I started floating in the air
Like a feather
I hope you can find me when you need to
I am hoping that you’ll
Catch me as I am floating;
That the breeze isn’t too strong and you miss me flying past you.
Maybe you have no hands to reach out for me
Maybe you used to fear water and never looked in the river,
And now you fear heights and I am floating too high
So maybe I should float lower
Or perhaps I should become something else
But what should I be?
Sometimes
Sometimes I feel like I am going to die from this pain. It’s so deep inside my bones it’s as if some machines are digging from the inside out. Jackhammers and bulldozers that someone parked inside my bone marrow or my joints, and they wake me by digging. Maybe chemo is some sort of construction company that is reconstructing my body. I don’t know how to battle it sometimes. All I can do is lie on my sofa and cry.
The sweats are so bad too. I turn on the air conditioner and the fans to cool off but I get so cold from the fans. Then as soon as I cover up in a blanket I starting sweating all over again. I can’t remember the last time anyone came to visit me or help me at home. Well, someone helped on Friday and that was nice. I hate to ask for help but I need it. I don’t know who to ask anymore. I feel as if mostly everyone has forgotten me. Maybe I would have been better off not finding the cancer in time. Maybe dying is what I’m supposed to do. I can’t be that inspiring to everyone if they never call me. I mean, I feel like shit and I want attention and hugs but I hate asking because it seems so insincere when people give you exactly what you asked for.
I’d like to remind my family that I have not died of cancer like our mother did, and that I am still alive, and maybe a phone call to check up on me or cheer me up is not too much to ask for.
I am scared about the Tamoxifen and the possible mood swings it might give me. I’m scared that my hair might not grow back or it might fall out again or something else will go wrong and the career I am dreaming of—the reason I am fighting to live—is a pointless exercise. What do we get out of feeling sorry for ourselves? I’m not really sure but I’m going to spend some of today finding out. It’s not like I have anything better to do. And how can I really inspire anyone when no one cares enough to really care? I mean, I have a phone. If it weren’t for facebook I’d be long forgotten.
I say that sometimes I feel like I’m going to die from the pain, and I do feel that. I also feel like I may wither away and shrivel up from the loneliness. Everyone else I meet who has cancer has family or friends taking care of them. I have a teddy bear, an air conditioner and streaming Netflix. And my roommate will return soon and move all my stuff around and be horribly insensitive and nothing about that makes me smile. I’m really only asking to be given a reason to smile. My life is shit right now and I know, I know, I know it could be worse, but I’m just looking for a sometime that I get to laugh a little and talk with other humans that are not in my head.
Sometimes talking and laughing and being hugged a lot makes the little construction company in my bones take a break for a while. It’s weird how that works but it really does. No one should have to do this alone…
The sweats are so bad too. I turn on the air conditioner and the fans to cool off but I get so cold from the fans. Then as soon as I cover up in a blanket I starting sweating all over again. I can’t remember the last time anyone came to visit me or help me at home. Well, someone helped on Friday and that was nice. I hate to ask for help but I need it. I don’t know who to ask anymore. I feel as if mostly everyone has forgotten me. Maybe I would have been better off not finding the cancer in time. Maybe dying is what I’m supposed to do. I can’t be that inspiring to everyone if they never call me. I mean, I feel like shit and I want attention and hugs but I hate asking because it seems so insincere when people give you exactly what you asked for.
I’d like to remind my family that I have not died of cancer like our mother did, and that I am still alive, and maybe a phone call to check up on me or cheer me up is not too much to ask for.
I am scared about the Tamoxifen and the possible mood swings it might give me. I’m scared that my hair might not grow back or it might fall out again or something else will go wrong and the career I am dreaming of—the reason I am fighting to live—is a pointless exercise. What do we get out of feeling sorry for ourselves? I’m not really sure but I’m going to spend some of today finding out. It’s not like I have anything better to do. And how can I really inspire anyone when no one cares enough to really care? I mean, I have a phone. If it weren’t for facebook I’d be long forgotten.
I say that sometimes I feel like I’m going to die from the pain, and I do feel that. I also feel like I may wither away and shrivel up from the loneliness. Everyone else I meet who has cancer has family or friends taking care of them. I have a teddy bear, an air conditioner and streaming Netflix. And my roommate will return soon and move all my stuff around and be horribly insensitive and nothing about that makes me smile. I’m really only asking to be given a reason to smile. My life is shit right now and I know, I know, I know it could be worse, but I’m just looking for a sometime that I get to laugh a little and talk with other humans that are not in my head.
Sometimes talking and laughing and being hugged a lot makes the little construction company in my bones take a break for a while. It’s weird how that works but it really does. No one should have to do this alone…
Sunday, July 18, 2010
Inspiration
Sometimes those of us who are unintentionally inspiring others need someone to be inspired by. Today I met Katelyn, a 22 year old with breast cancer. She was all smiles and super positive. Her mother told me she’d get chemo treatments then go out to concerts. Her siblings have even set up a non profit for young women with breast cancer. It was nice to talk with her and to see her smiling. I really hope this medicine doesn’t crush her spirit or depress her--- but if it does I hope she meets someone who is smiling and inspiring like I have. Because, honestly, no matter how inspiring I may be to others I, too, need inspiration from others. Katelyn has reminded me see that we can all be strong and that we all do have something to fight for--- our lives!
Monday, July 12, 2010
NY Daily News Article
The link to the article about me: http://www.nydailynews.com/money/2010/07/12/2010-07-12_jobless_might_as_well_act.html
The photos were in the actual paper.
The photos were in the actual paper.
OMG I Have Cancer
There have been intermittent times since I was diagnosed that I find myself sitting on the toilet being hit with the realization that, holy fuck, I am 34 years old and I have cancer. I’m on the toilet a lot seeing as chemo keeps me running there, and it’s always been a thoughtful spot for me. It’s actually where I was when I was rehearsing my speech to my family about my having cancer before I’d even gotten the official confirmation. I think I was hoping that by practicing telling them that it would make it not come true. Obviously: just because you’re paranoid doesn’t mean they’re not after you.
Tonight I watched the movie Zombieland and then I headed to the bathroom. I started thinking and of course it hit me. It hit hard this time: Oh My Gawd I have Cancer! It’s like one of those things in life where you can see death right there in front of you and you have no control. His knock was at my door, or at least his feet were creaking on my stairs, and I couldn’t hide. When you are faced with death like that the natural instinct is to fight for your life. You don’t have a choice here. For once in my life my arguing was really life or death related and for once in my life I was taken rather seriously about it. It’s the same thing if zombies are chasing you and you can run, you’ll run. If you have a gun you’ll shoot. You will do anything to survive it. Which explains my taking the chemo they give me no matter how fucking awful it is and how much I don’t agree it’s the cure for cancer, or even near the cure.
The other day I wanted to give up. I still kind of do, but I’m going in on Thursday and I’m going to suffer through whatever happens this weekend. I was talking to someone recently who is very important to me and I could see in this person’s eyes that my having cancer was something that truly effected them; like, deeply bothered by it. A lot of people say they admire my strength and my courage; that I’m a trooper and I’m so amazing. I’ll tell you that I did not intend to inspire anyone, and when I’m screaming in my bed this Saturday begging my mommie to come and save me from the pain I will feel far from inspiring. That’s what sometimes digs into me; the fact that I know everyone knows what I’m going through is hard and they get that I’m fighting it, but that none of them really know how hard it is.
I’m not saying anyone should give me an award; I’m not the first person to do this—although I do really like flowers and massages. I’m not saying anyone should be more vocal about their admiration and support, although the support is so appreciated. I just know that most of my friends and family haven’t seen the worst, and if they saw it they still wouldn’t really know the true depth of hardship because they aren’t going through it. That is why talking with other cancer patients, especially ones my age who are dealing with similar issues and on the same medicines, has been something that has both comforted me greatly and scared me shitless. –Or was that the anti-nausea meds? See, cancer joke. Only the cancer survivors laughed.
But seeing the look on the face of this person who I know admired me before the cancer, well, I guess that truly makes me realize how hard what I’m going through is. Sometimes I try to forget so much that I actually forget. I am getting very good at distracting myself and letting myself be desensitized to the needles and IV bags and all the crazy waiting I go through. In this talk I was reminded of it being real and being terrifying. Not that I wasn’t thrilled to talk to this person, it kind of made my week, but this is a person who has helped me many times put my thoughts together so they actually make sense and since I haven’t had that in a while it was both a breath of fresh air and a wake up call. I’m simply stating that my life and the reality of my situation was returned to its natural perspective and I’m starting to remember not only the seriousness of my situation, but the reason why I wanted to fight it in the first place. Life is scary and there are days I want to drop out of it, even without cancer, but having acting in my life has made me a better person and I can’t imagine ever letting that go.
So, I guess I should thank both the makers of Zombieland and that wonderful person I talked to; I kind of needed that kick in the ass even though that was probably not your intention at all. I guess I’m surprised by what kicks my ass!
Tonight I watched the movie Zombieland and then I headed to the bathroom. I started thinking and of course it hit me. It hit hard this time: Oh My Gawd I have Cancer! It’s like one of those things in life where you can see death right there in front of you and you have no control. His knock was at my door, or at least his feet were creaking on my stairs, and I couldn’t hide. When you are faced with death like that the natural instinct is to fight for your life. You don’t have a choice here. For once in my life my arguing was really life or death related and for once in my life I was taken rather seriously about it. It’s the same thing if zombies are chasing you and you can run, you’ll run. If you have a gun you’ll shoot. You will do anything to survive it. Which explains my taking the chemo they give me no matter how fucking awful it is and how much I don’t agree it’s the cure for cancer, or even near the cure.
The other day I wanted to give up. I still kind of do, but I’m going in on Thursday and I’m going to suffer through whatever happens this weekend. I was talking to someone recently who is very important to me and I could see in this person’s eyes that my having cancer was something that truly effected them; like, deeply bothered by it. A lot of people say they admire my strength and my courage; that I’m a trooper and I’m so amazing. I’ll tell you that I did not intend to inspire anyone, and when I’m screaming in my bed this Saturday begging my mommie to come and save me from the pain I will feel far from inspiring. That’s what sometimes digs into me; the fact that I know everyone knows what I’m going through is hard and they get that I’m fighting it, but that none of them really know how hard it is.
I’m not saying anyone should give me an award; I’m not the first person to do this—although I do really like flowers and massages. I’m not saying anyone should be more vocal about their admiration and support, although the support is so appreciated. I just know that most of my friends and family haven’t seen the worst, and if they saw it they still wouldn’t really know the true depth of hardship because they aren’t going through it. That is why talking with other cancer patients, especially ones my age who are dealing with similar issues and on the same medicines, has been something that has both comforted me greatly and scared me shitless. –Or was that the anti-nausea meds? See, cancer joke. Only the cancer survivors laughed.
But seeing the look on the face of this person who I know admired me before the cancer, well, I guess that truly makes me realize how hard what I’m going through is. Sometimes I try to forget so much that I actually forget. I am getting very good at distracting myself and letting myself be desensitized to the needles and IV bags and all the crazy waiting I go through. In this talk I was reminded of it being real and being terrifying. Not that I wasn’t thrilled to talk to this person, it kind of made my week, but this is a person who has helped me many times put my thoughts together so they actually make sense and since I haven’t had that in a while it was both a breath of fresh air and a wake up call. I’m simply stating that my life and the reality of my situation was returned to its natural perspective and I’m starting to remember not only the seriousness of my situation, but the reason why I wanted to fight it in the first place. Life is scary and there are days I want to drop out of it, even without cancer, but having acting in my life has made me a better person and I can’t imagine ever letting that go.
So, I guess I should thank both the makers of Zombieland and that wonderful person I talked to; I kind of needed that kick in the ass even though that was probably not your intention at all. I guess I’m surprised by what kicks my ass!
What Makes a Woman a Woman
I used to think that the difference between boys and girls was that boys had short hair and girls had long. I really thought that was the whole difference. Then I started growing up and learned a little more about birds and bees and all that stuff. I met girls with short hair and boys with long hair and I even dated some boys with long hair. Lately I have been thinking about how there was a time that being a mother, giving birth to a baby and breast feeding was something that defined a woman as a woman. I felt like all those female parts and wearing make up and high heels were things that made women something besides men; as if without those things we were men.
I hated wearing anything that made me look manly, like when I parked cars in downtown San Diego I had to wear this uniform that was khaki slacks and a polo shirt, but it was so un-feminine that I truly believed people would mistake me for a man. Or maybe I feared they’d mistake me for a lesbian. I never understood women who didn’t want kids because somehow I thought that made them not women. I thought that if a woman couldn’t have a child it was like she’d been robbed of something and what was the point in living. I always felt that my worst fear would be infertility or having to have my uterus and ovaries all removed. It baffled me that there were people on earth who chose to not have kids. It baffled me that there were women who dressed manly by choice, even if they were total dykes.
Here I am at 34 battling cancer with medicines that could potentially destroy all my chances of ever having children, I have one real breast and no hair and for some reason I feel more feminine than I have in a long time. I could have or at least be at risk for cervical cancer or ovarian cancer and there is a likelihood very soon someone may tell me that I should remove all my girl parts in order to avoid the risks of developing more cancers. Or perhaps I’ll be told I have to do it. Either way I have been considering that after I am through with the five years of Tamoxifen, if I can have a child I will most likely pop one out right away and then remove the whole works. So, if I do that, am I still a woman? One breast, no uterus or ovaries. What makes a woman a woman?
I’ve meet women who have had an oophorectomy or a hysterectomy and they look like women. They wear make up or they don’t; they appear to have breasts even if they are reconstructed ones; they wear dresses and high heels and they certainly are not men. So, yeah, I’ll be lacking certain hormones that are defining in females, and I’ll be missing certain body parts that are as well, but I’ll still have my vagina, and my female brain and most of my female-ness that is not entirely controlled by estrogen. And I’ll still not be a man.
I’m not sure where I got my idea that I might be mistaken for a man. Perhaps it was something that came from childhood that I don’t fully recall. I mean, even being bald no one has really questioned it besides the six year old girl I sat near on the subway who asked: “Are you a boy or a girl?” And in her case she simply had never seen a bald woman before and wasn’t sure what to think of it. That’s how I felt as a kid too: I was raised around girls who had long hair and wore pig tails or braids, and boys had short hair and men were bald not women. I guess if I had seen a bald woman when I was six I would have thought she looked odd and I would have questioned if she was a woman or said she looked ugly or weird. My six year old niece called it weird and even though she didn’t say I looked ugly I knew she was kind of thinking it. She said something about “when you look pretty” which meant when I have my hair and I know she didn’t mean it as insulting at all, that she simply found it unfamiliar.
I’m glad my niece saw me bald, and that girl on the subway as well, because I think it’s important for girls to understand from a young age that being female means more than the length of your hair, the size or even existence of your breasts, the fact that you are or are not a mother, whether you have ovaries or a uterus, that you wear a dress and heels or make up everyday, that you wear frilly underwear or not. Being a woman is something glamorous and enchanting even when you are wearing flannel pajamas and eating ice cream from a carton. Femininity is not defined by lipstick and tampons; all woman are different. We come in a variety of sizes and shapes; we come with all sorts of funny quirks and nasty habits; we like what we like and we do what we do, and we are still women when we lose a breast or any other part of our body. It’s not my body that defines my womanhood. I’m not entirely sure what it is that makes me a woman, but I know that no matter what I lose I will always be a woman because I feel like a woman. That is me. It is not that I am not a man, it is that I am a woman. And being a woman, no matter what I look like, matters.
I hated wearing anything that made me look manly, like when I parked cars in downtown San Diego I had to wear this uniform that was khaki slacks and a polo shirt, but it was so un-feminine that I truly believed people would mistake me for a man. Or maybe I feared they’d mistake me for a lesbian. I never understood women who didn’t want kids because somehow I thought that made them not women. I thought that if a woman couldn’t have a child it was like she’d been robbed of something and what was the point in living. I always felt that my worst fear would be infertility or having to have my uterus and ovaries all removed. It baffled me that there were people on earth who chose to not have kids. It baffled me that there were women who dressed manly by choice, even if they were total dykes.
Here I am at 34 battling cancer with medicines that could potentially destroy all my chances of ever having children, I have one real breast and no hair and for some reason I feel more feminine than I have in a long time. I could have or at least be at risk for cervical cancer or ovarian cancer and there is a likelihood very soon someone may tell me that I should remove all my girl parts in order to avoid the risks of developing more cancers. Or perhaps I’ll be told I have to do it. Either way I have been considering that after I am through with the five years of Tamoxifen, if I can have a child I will most likely pop one out right away and then remove the whole works. So, if I do that, am I still a woman? One breast, no uterus or ovaries. What makes a woman a woman?
I’ve meet women who have had an oophorectomy or a hysterectomy and they look like women. They wear make up or they don’t; they appear to have breasts even if they are reconstructed ones; they wear dresses and high heels and they certainly are not men. So, yeah, I’ll be lacking certain hormones that are defining in females, and I’ll be missing certain body parts that are as well, but I’ll still have my vagina, and my female brain and most of my female-ness that is not entirely controlled by estrogen. And I’ll still not be a man.
I’m not sure where I got my idea that I might be mistaken for a man. Perhaps it was something that came from childhood that I don’t fully recall. I mean, even being bald no one has really questioned it besides the six year old girl I sat near on the subway who asked: “Are you a boy or a girl?” And in her case she simply had never seen a bald woman before and wasn’t sure what to think of it. That’s how I felt as a kid too: I was raised around girls who had long hair and wore pig tails or braids, and boys had short hair and men were bald not women. I guess if I had seen a bald woman when I was six I would have thought she looked odd and I would have questioned if she was a woman or said she looked ugly or weird. My six year old niece called it weird and even though she didn’t say I looked ugly I knew she was kind of thinking it. She said something about “when you look pretty” which meant when I have my hair and I know she didn’t mean it as insulting at all, that she simply found it unfamiliar.
I’m glad my niece saw me bald, and that girl on the subway as well, because I think it’s important for girls to understand from a young age that being female means more than the length of your hair, the size or even existence of your breasts, the fact that you are or are not a mother, whether you have ovaries or a uterus, that you wear a dress and heels or make up everyday, that you wear frilly underwear or not. Being a woman is something glamorous and enchanting even when you are wearing flannel pajamas and eating ice cream from a carton. Femininity is not defined by lipstick and tampons; all woman are different. We come in a variety of sizes and shapes; we come with all sorts of funny quirks and nasty habits; we like what we like and we do what we do, and we are still women when we lose a breast or any other part of our body. It’s not my body that defines my womanhood. I’m not entirely sure what it is that makes me a woman, but I know that no matter what I lose I will always be a woman because I feel like a woman. That is me. It is not that I am not a man, it is that I am a woman. And being a woman, no matter what I look like, matters.
Friday, July 9, 2010
Loneliness
I don’t know exactly why but I am really emotional right now. I keep sobbing. I feel really alone and have no one to talk to about the things I am feeling and thinking. Plus I hurt all over. I want to call my mom more than anything in the world. I keep remembering all our talks and how much fun we’d have just goofing around. Even when we’d fight it usually ended with some sarcastic comment or whatever. Even when she’d annoy me. I feel like her sister, my aunt, should be calling me or somehow be more involved in what I’m going through; I think my mom would be really pissed and disappointed knowing that no one is taking care of her youngest child when she needs people the most.
I do need people. I go a little nuts being at home all day watching Quantum Leap episodes and building a doll house. Sometimes I feel too rotten to even do those things and I end up lying around day dreaming about a future I wish I had. My future successful career or wonderful man who falls in love with me. Sometimes it goes back to that person I fell for that I should not have and I can’t seem to get off my mind. I need entertainment or distractions. I need to snuggle with someone who can take this fear and anger away; who can make me feel, just for a few moments, like I’m not alone; like I’m loved.
I go crazy here in my apartment listening to my neighbours yell at their screaming kids and the fucking ice cream truck going by at all hours. I start to feel okay again and then I get another hot flash and need to sit down. I get aches in my chest and aches in my back, my feet hurt and I get dizzy from the stupid pain killers. It’s harder and harder each day to remember why I’m doing this. Life was so wonderful so I knew fighting was worth it but right now life is sucking so I keep forgetting what I’m fighting for. And I love that I have cheerleaders rooting for me but mostly that’s through text messages and facebook notes; I miss real human contact. I miss being an actor and being with other actors.
I know it’s only until the end of July and I’m done, but when you are as bored and as uncomfortable as I am on a daily basis time starts moving so much slower that you can count the seconds until your head explodes. I ask people to go out or to come by and to join me at chemo, but I think I might be burdening them or maybe they are just over my whole fighting cancer thing. I certainly am. I’m scared to death that I won’t make it; that I’ll have a heart attack and no one will find my body; that I’ll give up before I’m through and I’ll be a quitter or the cancer will return because I only did half the Taxol instead of the whole treatment. I’m scared that everyone expects me to be sp strong that if I show them that I’m weak they’ll be disappointed in me. I’m scared I’ll die from some infection or I’ll die in surgery or the cancer will come back as soon as I’m happy again and I’ll die from it.
I want to laugh more but I’m by myself so much all I have to laugh at is the crazy shit I think about or the stuff I watch on TV. I want to dance but my body hurts and I can hardly walk. I miss my life. I miss being normal; being healthy anyway. I miss me. I want—no, I need a hug that lasts longer than 2 seconds. I need a real hug that doesn’t have to end. I know that no one fully gets what I’m feeling unless they’ve been through this, but I think anyone who has been lonely can relate to that part at least. I don’t need people to get this so much as I just need people. I feel like I’m desperate to talk to anyone. I actually called my dad last night and talked to him on the phone for twenty minutes. Neither of us likes talking on the phone but I knew that with him I had no risk of bursting into tears.
I’m trying to find things to plan so I can regain some control over my life again. I planned the surgery and I’m planning my visit to California for the holidays. I can plan my move in September and if I had more money I’d plan some sort of trip or excursion for August. I can’t plan very much since I never know how I’m going to feel. I’m so bored. I can’t even think straight or sit still long enough to write very much anymore. I’m hungry but I’m too tired or sore to cook and not interested in food really. I want to talk to my family but they never call me and if they did I’m not sure what we’d talk about; I imagine we’d talk around the whole cancer thing and our dead mother as we usually do. I hate that. I’d rather just talk about her and talk about cancer. The only one in my family really willing to have a conversation about it was my six year old niece and I really enjoyed the straightforwardness and understanding she has. I hope she keeps that and never adopts the whole “ignore the pink elephant in the room” game that is so popular with the Desy family. I miss my siblings and their kids but when we talk I guess what I really want to talk about never gets said and I end up not feeling any better than before.
I miss my friends too. I hear from some here and there. Some ignore my texts or calls. I can’t figure that out. The one person on earth I thought I could cry with seems to be avoiding me.
Writing this has become exhausting and I’ve bored myself.
I do need people. I go a little nuts being at home all day watching Quantum Leap episodes and building a doll house. Sometimes I feel too rotten to even do those things and I end up lying around day dreaming about a future I wish I had. My future successful career or wonderful man who falls in love with me. Sometimes it goes back to that person I fell for that I should not have and I can’t seem to get off my mind. I need entertainment or distractions. I need to snuggle with someone who can take this fear and anger away; who can make me feel, just for a few moments, like I’m not alone; like I’m loved.
I go crazy here in my apartment listening to my neighbours yell at their screaming kids and the fucking ice cream truck going by at all hours. I start to feel okay again and then I get another hot flash and need to sit down. I get aches in my chest and aches in my back, my feet hurt and I get dizzy from the stupid pain killers. It’s harder and harder each day to remember why I’m doing this. Life was so wonderful so I knew fighting was worth it but right now life is sucking so I keep forgetting what I’m fighting for. And I love that I have cheerleaders rooting for me but mostly that’s through text messages and facebook notes; I miss real human contact. I miss being an actor and being with other actors.
I know it’s only until the end of July and I’m done, but when you are as bored and as uncomfortable as I am on a daily basis time starts moving so much slower that you can count the seconds until your head explodes. I ask people to go out or to come by and to join me at chemo, but I think I might be burdening them or maybe they are just over my whole fighting cancer thing. I certainly am. I’m scared to death that I won’t make it; that I’ll have a heart attack and no one will find my body; that I’ll give up before I’m through and I’ll be a quitter or the cancer will return because I only did half the Taxol instead of the whole treatment. I’m scared that everyone expects me to be sp strong that if I show them that I’m weak they’ll be disappointed in me. I’m scared I’ll die from some infection or I’ll die in surgery or the cancer will come back as soon as I’m happy again and I’ll die from it.
I want to laugh more but I’m by myself so much all I have to laugh at is the crazy shit I think about or the stuff I watch on TV. I want to dance but my body hurts and I can hardly walk. I miss my life. I miss being normal; being healthy anyway. I miss me. I want—no, I need a hug that lasts longer than 2 seconds. I need a real hug that doesn’t have to end. I know that no one fully gets what I’m feeling unless they’ve been through this, but I think anyone who has been lonely can relate to that part at least. I don’t need people to get this so much as I just need people. I feel like I’m desperate to talk to anyone. I actually called my dad last night and talked to him on the phone for twenty minutes. Neither of us likes talking on the phone but I knew that with him I had no risk of bursting into tears.
I’m trying to find things to plan so I can regain some control over my life again. I planned the surgery and I’m planning my visit to California for the holidays. I can plan my move in September and if I had more money I’d plan some sort of trip or excursion for August. I can’t plan very much since I never know how I’m going to feel. I’m so bored. I can’t even think straight or sit still long enough to write very much anymore. I’m hungry but I’m too tired or sore to cook and not interested in food really. I want to talk to my family but they never call me and if they did I’m not sure what we’d talk about; I imagine we’d talk around the whole cancer thing and our dead mother as we usually do. I hate that. I’d rather just talk about her and talk about cancer. The only one in my family really willing to have a conversation about it was my six year old niece and I really enjoyed the straightforwardness and understanding she has. I hope she keeps that and never adopts the whole “ignore the pink elephant in the room” game that is so popular with the Desy family. I miss my siblings and their kids but when we talk I guess what I really want to talk about never gets said and I end up not feeling any better than before.
I miss my friends too. I hear from some here and there. Some ignore my texts or calls. I can’t figure that out. The one person on earth I thought I could cry with seems to be avoiding me.
Writing this has become exhausting and I’ve bored myself.
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