I’ll be honest, I was really scared today.
.
And I’m still a little scared. I’ve had panic attacks before, and that’s the only basis I have for comparison to what happened today. When I got up, I was feeling a little woozy, and sometimes my lips would feel tingly. I didn’t really think much of it. But it got worse bit by bit as the day went on.
.
I managed to eat something, and make a necklace, then left for radiation. I got progressively woozier as I made my way uptown, and I probably should have pulled over, or asked Kris to take me, but I really thought it would be fine. I decided that when I was done with radiation, I’d go upstairs and see my Nurse and let her know what was up.
.
By the time I was halfway through treatment though it was really really bad. My whole face was tingling and almost numb. It was like the physical effects of a panic attack, except the physical stuff happened FIRST, then the actual panic started- because I had no idea what was going on. I wasn’t having trouble breathing, but the effects were the same. It was awful, and frightening.
.
They brought in a wheelchair to the radiation room, and took me to their little observation room and got me on a stretcher, hooked up a heart monitor, pulse-ox and blood pressure and asked me 5 million questions. They called up to my oncologist and the nurse came down to get some blood. By the time she came back with results, I was feeling a lot better, had stopped tingling, calmed down, stopped crying too (yeah, it was pretty bad).
.
She took me upstairs and they put me in a chemo room and started a drip with magnesium and potassium, which were very very low. They gave me a scrip for potassium, and want me to pick up magnesium pills (can be gotten otc) to take too. They’re fairly sure once they get the balance corrected it will stay corrected and the low magnesium levels evidently explain my reaction today.
.
I’ve been home since about 6:30 though, and I still feel… a little puny. A couple of times, when I was standing in the kitchen talking to Kris, I swear my lips started tingling again. I guess I need to take it easy.
.
But I hate this. I have no idea what my body is doing anymore. Today was my last day of radiation, I expected it to be good, happy even. Now I’m tired and scared and yes, woozy again. :sigh:
.
Frustrating. I have a month off of treatment. And even after that, no more radiation. I just hope my body will calm down, so I can stop being afraid.
Monday, July 30, 2012
Tuesday, July 24, 2012
4 More Days
Took a shower. Got done and was so dizzy I ended up in my towel sitting on the toilet lid spinning. Then threw up in the bathtub.
.
Still pretty dizzy. I think it must be because I’m hungry. Was surprised my stomach managed to actually produce anything. Not sure what to do now to be honest. I really want to call and tell them I won’t finish the radiation. Don’t think I have the guts to do it though. 5 sessions left including today.
.
Guess I’ll head out and try to eat something on my way. Maybe after todays treatment I can talk to him, tell him I don’t want to finish it.
.
I don’t want to do this anymore. I can’t handle it.
.
Still pretty dizzy. I think it must be because I’m hungry. Was surprised my stomach managed to actually produce anything. Not sure what to do now to be honest. I really want to call and tell them I won’t finish the radiation. Don’t think I have the guts to do it though. 5 sessions left including today.
.
Guess I’ll head out and try to eat something on my way. Maybe after todays treatment I can talk to him, tell him I don’t want to finish it.
.
I don’t want to do this anymore. I can’t handle it.
Monday, July 23, 2012
5 More days
I’m so hungry I feel like my stomach is trying to gnaw its way out of my body. But first thing this morning, just the thought of trying to eat had me dry heaving for 20 minutes. Thankfully there wasn’t anything IN my stomach to actually get rid of.
.
Managed to eat a few bites of a sandwich before radiation, but then got sick before I could even leave the restaurant. When the techs asked how I am, I was shaking, started crying during treatment… and I think one of them went and got the dietician who tried to hijack me on my way out. I said thank you but I just want to go home.
.
She gave me the same 5 pages about eating around diarrhea that the Chemo dietician has given me 3 times. Diarrhea, for once, was not the problem today.
.
The thought of actually… eating food turns my stomach. Completely. I just can’t. But I am so fucking hungry I can barely function. I don’t know how to deal with this. I honestly have no clue.
.
I don’t know if I can do another 5 days. What if it gets even worse?
.
Managed to eat a few bites of a sandwich before radiation, but then got sick before I could even leave the restaurant. When the techs asked how I am, I was shaking, started crying during treatment… and I think one of them went and got the dietician who tried to hijack me on my way out. I said thank you but I just want to go home.
.
She gave me the same 5 pages about eating around diarrhea that the Chemo dietician has given me 3 times. Diarrhea, for once, was not the problem today.
.
The thought of actually… eating food turns my stomach. Completely. I just can’t. But I am so fucking hungry I can barely function. I don’t know how to deal with this. I honestly have no clue.
.
I don’t know if I can do another 5 days. What if it gets even worse?
Sunday, July 22, 2012
Immature
Honestly?
.
I just don’t want to do this anymore. I know that sounds incredibly immature, but I just-
.
.
.
I think radiation was a bad idea. Ultimately it was my choice, and I wanted to do everything we could do to make sure that the Cancer stays gone, but I am so physically unhappy, and so sick all the time. I know that’s sort of… what you get when you fight Cancer. But somehow I still didn’t really expect this.
.
Aside from just the weirdness of being the fat girl whose dietician recommends eating less fibrous, more processed, less healthy food because maybe that will actually stay in my system, every single thing I eat my body rejects. Kris still doesn’t believe me when I tell her that within 10 minutes of eating ANYTHING, I will have diarrhea. It’s not logical that my body would even process food that quickly but it happens. I know it does, because I can go most of the day without eating anything and then the minute I do… diarrhea.
.
To say nothing of the nausea (which to be honest, I did kind of expect… just not like this), and the abdominal pain- no doubt from the cramping/diarrhea issues.
.
I’m exhausted. Fatigued. And my Radiation Oncologist just says, “don’t forget you can take up to 8 Imodium in a day if you need to,” and my Oncologist says, “Call us if you need different nausea meds,” and they don’t get that I’m not a pill person, that I forget to take them, that I hate taking medications. That yes, I am the 1% of people who for some reason, would rather lay in bed nauseated and in pain then take 5 pills to try and make it go away. No matter how stupid that sounds. Some of my thinking is still… disordered. I realize that.
.
I feel like I should have just done Chemo. Except that I know if the Cancer came back and I had just done Chemo, I’d have hated myself for not doing both in the first place.
.
I’m just so tired, and so tired of feeling/being sick. I feel like all I ever do is sleep and sit in the bathroom. Now of course there’s dizziness to contend with, which I’m sure is at least in part, due to my not eating enough.
.
There are times when I’d almost rather go back to being in constant pain, like I was before the hysterectomy. How sad is that? At least then… ok I couldn’t really do anything then either.
.
What happened? Seriously? For awhile things were so amazing, it seemed like everything was going to be great for once. And then all of this shit came crashing down and now I have nothing. No job, no money, no prospects, no energy, no health. I want my life back. I miss my life.
.
Six sessions left. Radiation was a mistake. Too late to stop now.
.
I just don’t want to do this anymore. I know that sounds incredibly immature, but I just-
.
.
.
I think radiation was a bad idea. Ultimately it was my choice, and I wanted to do everything we could do to make sure that the Cancer stays gone, but I am so physically unhappy, and so sick all the time. I know that’s sort of… what you get when you fight Cancer. But somehow I still didn’t really expect this.
.
Aside from just the weirdness of being the fat girl whose dietician recommends eating less fibrous, more processed, less healthy food because maybe that will actually stay in my system, every single thing I eat my body rejects. Kris still doesn’t believe me when I tell her that within 10 minutes of eating ANYTHING, I will have diarrhea. It’s not logical that my body would even process food that quickly but it happens. I know it does, because I can go most of the day without eating anything and then the minute I do… diarrhea.
.
To say nothing of the nausea (which to be honest, I did kind of expect… just not like this), and the abdominal pain- no doubt from the cramping/diarrhea issues.
.
I’m exhausted. Fatigued. And my Radiation Oncologist just says, “don’t forget you can take up to 8 Imodium in a day if you need to,” and my Oncologist says, “Call us if you need different nausea meds,” and they don’t get that I’m not a pill person, that I forget to take them, that I hate taking medications. That yes, I am the 1% of people who for some reason, would rather lay in bed nauseated and in pain then take 5 pills to try and make it go away. No matter how stupid that sounds. Some of my thinking is still… disordered. I realize that.
.
I feel like I should have just done Chemo. Except that I know if the Cancer came back and I had just done Chemo, I’d have hated myself for not doing both in the first place.
.
I’m just so tired, and so tired of feeling/being sick. I feel like all I ever do is sleep and sit in the bathroom. Now of course there’s dizziness to contend with, which I’m sure is at least in part, due to my not eating enough.
.
There are times when I’d almost rather go back to being in constant pain, like I was before the hysterectomy. How sad is that? At least then… ok I couldn’t really do anything then either.
.
What happened? Seriously? For awhile things were so amazing, it seemed like everything was going to be great for once. And then all of this shit came crashing down and now I have nothing. No job, no money, no prospects, no energy, no health. I want my life back. I miss my life.
.
Six sessions left. Radiation was a mistake. Too late to stop now.
Thursday, July 19, 2012
The World is Awash in Pink
There are other Cancers.
.
Women don’t JUST get Breast Cancer.
.
Women’s health is not JUST about Breast Health.
.
If I wear a peach ribbon, people assume it’s actually Pink. They give me a thumb’s up for supporting Breast Health. I don’t bother to tell them I wear peach because I have Uterine Cancer. Sometimes I do. They rarely bother to look upset. It’s natural to assume otherwise. I did, before I was diagnosed.
.
There is no prosthesis for what I lost to Cancer. There is no rallying cry across the universe for my cause. There is no universal understanding of my shame or pain or fear. No telethons, no 3 day walks, no desperate worldwide search for a cure.
.
My loss is invisible to the world at large. There is no sea of peach once a year to recognize what I and other survivors, other victims deal with. No peach kitchen-aid mixers, or peach pens. Or teal (for ovarian cancer) notebooks, laptop sleeves. I’m as guilty as anyone else. Before my diagnosis, I wouldn’t have noticed either.
.
And I get it. The prevalence of Breast Cancer is probably a lot higher. But it’s not all there is. My experience and my struggle shouldn’t have to suffocate because it’s not the pop-culture-cause. If I’ve learned anything these last few months, Cancer doesn’t discriminate. It doesn’t really care if you’re young, or old, or white, or black, or asian, or male or female, or rich or poor. Cancer is a thief. Of time, of health, of dignity… of life.
.
But the world is awash with pink.
.
Because the honest truth is that the world will always care more about a woman’s Breasts, than they ever will about our health.
.
Women don’t JUST get Breast Cancer.
.
Women’s health is not JUST about Breast Health.
.
If I wear a peach ribbon, people assume it’s actually Pink. They give me a thumb’s up for supporting Breast Health. I don’t bother to tell them I wear peach because I have Uterine Cancer. Sometimes I do. They rarely bother to look upset. It’s natural to assume otherwise. I did, before I was diagnosed.
.
There is no prosthesis for what I lost to Cancer. There is no rallying cry across the universe for my cause. There is no universal understanding of my shame or pain or fear. No telethons, no 3 day walks, no desperate worldwide search for a cure.
.
My loss is invisible to the world at large. There is no sea of peach once a year to recognize what I and other survivors, other victims deal with. No peach kitchen-aid mixers, or peach pens. Or teal (for ovarian cancer) notebooks, laptop sleeves. I’m as guilty as anyone else. Before my diagnosis, I wouldn’t have noticed either.
.
And I get it. The prevalence of Breast Cancer is probably a lot higher. But it’s not all there is. My experience and my struggle shouldn’t have to suffocate because it’s not the pop-culture-cause. If I’ve learned anything these last few months, Cancer doesn’t discriminate. It doesn’t really care if you’re young, or old, or white, or black, or asian, or male or female, or rich or poor. Cancer is a thief. Of time, of health, of dignity… of life.
.
But the world is awash with pink.
.
Because the honest truth is that the world will always care more about a woman’s Breasts, than they ever will about our health.
Monday, July 16, 2012
Dizzy
Awake for a minute. Going to try and go back to bed until I have to leave for radiation.
.
Feel worse and worse each day. Tired, sick, nauseated, unsettled. 11 more radiation treatments and 2 more Chemo. Then a month off, then more Chemo.
.
I think the Chemo alone will be fine, manageable at least.
.
But the radiation. :sigh: I just feel like I’m draining away. Kris keeps offering to drive me on radiation only days and I keep saying no. But the truth is, she may have to soon. I’m so tired.
.
Spent most of yesterday in bed… probably most of today too to be honest. I don’t know how to manage my symptoms anymore. I’m not vomiting. But whenever I eat, whatever I eat… the diarrhea is so bad. Sorry, tmi.
.
I’m losing weight, more than before. My body is a different shape than it was a week ago. I’m tired of feeling sick.
.
I keep telling myself that it’s almost over but it doesn’t feel like it’s almost over. I hate this. Which supertherapist would say is a poisonous thing in and of itself. But I don’t know how to feel any other way about it. I know it’s temporary. I know I’ll be fine when it’s all over.
.
But I hate it. I hate the way I feel. I hate being sick and exhausted and weak.
.
:sigh: Dizzy. That means back to bed with me.
.
Feel worse and worse each day. Tired, sick, nauseated, unsettled. 11 more radiation treatments and 2 more Chemo. Then a month off, then more Chemo.
.
I think the Chemo alone will be fine, manageable at least.
.
But the radiation. :sigh: I just feel like I’m draining away. Kris keeps offering to drive me on radiation only days and I keep saying no. But the truth is, she may have to soon. I’m so tired.
.
Spent most of yesterday in bed… probably most of today too to be honest. I don’t know how to manage my symptoms anymore. I’m not vomiting. But whenever I eat, whatever I eat… the diarrhea is so bad. Sorry, tmi.
.
I’m losing weight, more than before. My body is a different shape than it was a week ago. I’m tired of feeling sick.
.
I keep telling myself that it’s almost over but it doesn’t feel like it’s almost over. I hate this. Which supertherapist would say is a poisonous thing in and of itself. But I don’t know how to feel any other way about it. I know it’s temporary. I know I’ll be fine when it’s all over.
.
But I hate it. I hate the way I feel. I hate being sick and exhausted and weak.
.
:sigh: Dizzy. That means back to bed with me.
Big Surprise
I am ridiculously, deliriously tired of being in the bathroom.
.
I had a lovely morning at brunch with the girls. And ever since I’ve been home it’s just been me in bed, and then in and out of the bathroom. And jesus I’m so fucking tired of it. I’m tired of my stomach being torn up, I’m tired of feeling sick, I’m tired of being… stuck.
.
I have 11 radiation treatments left and I swear to god I want to quit. I just want to fucking quit. Can I quit? fuck. I’m just.. I don’t know if I can take this getting WORSE.
.
what’s that? Oh… I have to run to the bathroom again. Big fucking surprise.
.
I had a lovely morning at brunch with the girls. And ever since I’ve been home it’s just been me in bed, and then in and out of the bathroom. And jesus I’m so fucking tired of it. I’m tired of my stomach being torn up, I’m tired of feeling sick, I’m tired of being… stuck.
.
I have 11 radiation treatments left and I swear to god I want to quit. I just want to fucking quit. Can I quit? fuck. I’m just.. I don’t know if I can take this getting WORSE.
.
what’s that? Oh… I have to run to the bathroom again. Big fucking surprise.
Friday, July 13, 2012
First
Oh hey swell… The nausea’s back. Cause that whole 24 hours or so without it was just waaay too long. :sigh:
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Oh, and as a fun follow up look… I’ve now had my first Cancer Vomit. Super.
.
Fuck this shit.
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Oh, and as a fun follow up look… I’ve now had my first Cancer Vomit. Super.
.
Fuck this shit.
Wednesday, July 11, 2012
13 More
Today was not a good day.
.
Had a hard time sleeping this morning the way I usually do, so I woke up about an hour early. Went to radiation and honestly, the minute I walked out- I just felt exhausted, like I’d been hit by a truck. Made it home, started to deal with some anonymous fat hatred that found it’s way to my blog’s inbox… and then had to stop Crawled into bed and stayed there until almost 8 o’clock.
.
I zonked out dead asleep for HOURS. Got up, had some dinner and am still completely exhausted. Of course, in between those two things I spent about an hour in the bathroom before I could catch a break long enough to take some Imodium (which has fortunately finally started working).
.
Seriously, I had such a great day yesterday- and today… ugh. omg.
.
So tired of this.
.
13 more Radiation sessions. I can’t wait until this is over.
.
Had a hard time sleeping this morning the way I usually do, so I woke up about an hour early. Went to radiation and honestly, the minute I walked out- I just felt exhausted, like I’d been hit by a truck. Made it home, started to deal with some anonymous fat hatred that found it’s way to my blog’s inbox… and then had to stop Crawled into bed and stayed there until almost 8 o’clock.
.
I zonked out dead asleep for HOURS. Got up, had some dinner and am still completely exhausted. Of course, in between those two things I spent about an hour in the bathroom before I could catch a break long enough to take some Imodium (which has fortunately finally started working).
.
Seriously, I had such a great day yesterday- and today… ugh. omg.
.
So tired of this.
.
13 more Radiation sessions. I can’t wait until this is over.
Tuesday, July 10, 2012
Honestly
Honestly?
.
I just fucking hate this. I hate being sick. I hate being nauseated. I hate have to drive up to UT every fucking weekday to spend 10-20 minutes on some slab while people use a sheet to “cm roll” me to one side or the other while my vagina is out in the air for everyone to stare at.
.
I hate nausea pills and insurance and Imodium and dry flaking skin and exhaustion. I hate being pale and jaundiced and looking tired. And I hate feeling like I don’t look sick “enough” for people to really get it. I hate that I’m going to lose my hair and that I haven’t yet. And I hate spending 6 hours every week in a padded chair having poison dripped into my veins. I hate having a port, and I hate the still itchy incision.
.
I hate my giant scar. I hate all the changes my body is making, all the changes that are still to come.
.
I hate that I can never change my mind about having children. I hate that I lost my shitty, over-involved job because it’s taking me too long to be sick. I hate everything about all of this. I hate feeling useless and tired and unproductive. I hate not being creative or having the energy to do anything that I actually want to do.
.
I hate being 30 years old and knowing my Dad will have to pay for my insurance. I hate being 30 years old and knowing I have to rely on Kris for EVERYTHING. I hate not being able to support myself right now, for awhile yet. I hate that I have to be unemployed, that I have to deal with finding another job again, starting over.
.
I fucking hate all of this. I hate it. And I try to be positive and suck it up but right now, I’m nauseated and I’m tired and I just FUCKING HATE IT.
.
Fuck Cancer. FUCK FUCK FUCK.
.
For once, for the first time every my life actually FUCKING WORKED! I hate this. I want my GODDAMN LIFE BACK.
.
I just fucking hate this. I hate being sick. I hate being nauseated. I hate have to drive up to UT every fucking weekday to spend 10-20 minutes on some slab while people use a sheet to “cm roll” me to one side or the other while my vagina is out in the air for everyone to stare at.
.
I hate nausea pills and insurance and Imodium and dry flaking skin and exhaustion. I hate being pale and jaundiced and looking tired. And I hate feeling like I don’t look sick “enough” for people to really get it. I hate that I’m going to lose my hair and that I haven’t yet. And I hate spending 6 hours every week in a padded chair having poison dripped into my veins. I hate having a port, and I hate the still itchy incision.
.
I hate my giant scar. I hate all the changes my body is making, all the changes that are still to come.
.
I hate that I can never change my mind about having children. I hate that I lost my shitty, over-involved job because it’s taking me too long to be sick. I hate everything about all of this. I hate feeling useless and tired and unproductive. I hate not being creative or having the energy to do anything that I actually want to do.
.
I hate being 30 years old and knowing my Dad will have to pay for my insurance. I hate being 30 years old and knowing I have to rely on Kris for EVERYTHING. I hate not being able to support myself right now, for awhile yet. I hate that I have to be unemployed, that I have to deal with finding another job again, starting over.
.
I fucking hate all of this. I hate it. And I try to be positive and suck it up but right now, I’m nauseated and I’m tired and I just FUCKING HATE IT.
.
Fuck Cancer. FUCK FUCK FUCK.
.
For once, for the first time every my life actually FUCKING WORKED! I hate this. I want my GODDAMN LIFE BACK.
You Look AMAZING
I heard this over and over again. “You are the healthiest damn Cancer patient I’ve ever seen” said one friend. And they mean well. And they’re not wrong either. I had a good day today. My nausea of the last 4 days was almost completely gone, I had some better energy today, usually do on Mondays. I dressed up and cleaned up to go into the office and see everyone. I did it purposely so that I would look … well.
.
But at the same time, there is part of me that kept protesting, “it’s a good day,” “the side effects haven’t been so bad today,” I don’t know why I feel like I have to … justify not looking sick all the time. Which isn’t to say there aren’t days when I do. Kris even said today that my color was a lot better today than it had been this weekend.
.
Why do I feel like I should look sicker? :shrug: I don’t even have the energy to finish out this train of thought. fuck it. I think it’s time for bed.
.
Hello nausea. Not glad you’re back.
.
But at the same time, there is part of me that kept protesting, “it’s a good day,” “the side effects haven’t been so bad today,” I don’t know why I feel like I have to … justify not looking sick all the time. Which isn’t to say there aren’t days when I do. Kris even said today that my color was a lot better today than it had been this weekend.
.
Why do I feel like I should look sicker? :shrug: I don’t even have the energy to finish out this train of thought. fuck it. I think it’s time for bed.
.
Hello nausea. Not glad you’re back.
Tuesday, July 3, 2012
Too Tired
I actually talked to someone at Radiation today while I was waiting. (shocking, I know.) Another woman came out of the dressing room to wait and was asking how long my hair had been growing back (not the first time I’ve had this question) and I had to explain that I’d cut it way down, but that it hadn’t in fact, started falling out yet.
.
And she was saying that her hair didn’t start falling out until like.. her third treatment (my 3rd is this thursday), and that she did the same thing aftewards- cut it way down. She told me her current hair was a wig and that she was curious about the grow-back because her last chemo treatment had been in May and her hair wasn’t even as long as mine is.
.
I blogged a little bit about body issues in my other blog, and how I’ve realized that deep down, I’m actually disappointed that I haven’t lost any weight of real consequence. That was a hard thing to admit, and kind of fucked up really. :shrug:
.
From everything people keep telling me week 3 is when all the big bad side effects start to kick in.
.
Bring it on I guess. My stomach is already fucked up when I eat. My hips and pelvis are so sore and stiff. And I’m already exhausted all the fucking time. I don’t care anymore. I’m too tired to give a shit.
.
And she was saying that her hair didn’t start falling out until like.. her third treatment (my 3rd is this thursday), and that she did the same thing aftewards- cut it way down. She told me her current hair was a wig and that she was curious about the grow-back because her last chemo treatment had been in May and her hair wasn’t even as long as mine is.
.
I blogged a little bit about body issues in my other blog, and how I’ve realized that deep down, I’m actually disappointed that I haven’t lost any weight of real consequence. That was a hard thing to admit, and kind of fucked up really. :shrug:
.
From everything people keep telling me week 3 is when all the big bad side effects start to kick in.
.
Bring it on I guess. My stomach is already fucked up when I eat. My hips and pelvis are so sore and stiff. And I’m already exhausted all the fucking time. I don’t care anymore. I’m too tired to give a shit.
Sunday, July 1, 2012
Numb
Ok, so ever since my hysterectomy, my ass has been numb.
.
That sounds way weirder than it actually is. But basically when they did the hysto, they did most of it robotically which meant I got strapped down, flipped on my head and invaded by a robot arm.
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Then as an added bonus, they had to also make an incision in my belly to remove my actual uterus because of the remaining (very large) tumor. After waking up, I did notice at one point that there was a certain numbness over certain areas of my butt, but I didn’t actually ever say anything. I mean… I just figured it would go away.
.
But it never has. And that was April 30th. Well, now a week into Radiation, I am starting to have some feelings. Not like it used to be, but instead… sudden sharp and surprising pains breaking through the numbness. It blows. I mean, it was weird to have my ass be numb. But the pain? Sucks.
.
And I’m sure it’s the radiation, because I’m having the same kind of pains on the front of my body (lower abdominal, mid-abdominal)… basically. :sigh: It’s not enough to warrant medication. Or even mentioning to my Oncologists.. I don’t think at least. :shrug:
.
That was pretty much it. Just. weirdness. And random pain.
.
I’m kind of over it right now. Are we done yet?
.
No. 4 more weeks.
.
That sounds way weirder than it actually is. But basically when they did the hysto, they did most of it robotically which meant I got strapped down, flipped on my head and invaded by a robot arm.
.
Then as an added bonus, they had to also make an incision in my belly to remove my actual uterus because of the remaining (very large) tumor. After waking up, I did notice at one point that there was a certain numbness over certain areas of my butt, but I didn’t actually ever say anything. I mean… I just figured it would go away.
.
But it never has. And that was April 30th. Well, now a week into Radiation, I am starting to have some feelings. Not like it used to be, but instead… sudden sharp and surprising pains breaking through the numbness. It blows. I mean, it was weird to have my ass be numb. But the pain? Sucks.
.
And I’m sure it’s the radiation, because I’m having the same kind of pains on the front of my body (lower abdominal, mid-abdominal)… basically. :sigh: It’s not enough to warrant medication. Or even mentioning to my Oncologists.. I don’t think at least. :shrug:
.
That was pretty much it. Just. weirdness. And random pain.
.
I’m kind of over it right now. Are we done yet?
.
No. 4 more weeks.
Saturday, June 30, 2012
Mean Something
Had a talk with Kris tonight. Well, it started off as kind of general chatter with Kris and our friend Carolyn, about what happens when I’m done with treatment, as far as work is concerned.
.
And the crux of the issue is, Kris really doesn’t want me to go back to my job at all. So after we were done with dinner and driving home we talked about it a lot more. I told her that I kind of agree with her, but that (especially if I don’t get the Cancer benefit from my insurance) it would mean having to lean on her a lot more until I found something else- and possibly even beyond that if I can’t find something comparable to what I make now. And her response was that we will work it out. That she knows I am good for wahtever would need to ultimately be paid back, and that she just really is not ok with me going back to that job. Especially not after all of this.
.
What it really boils down to is getting it to be right in MY head. I have grown very used to being able to support myself. With a minimum of outside assistance. And it will be hard to be unemployed again after 2 years of such rock steady work. But she made a lot of good points tonight. The real barrier to it isn’t even financial. Kris would support me if I needed it until I found the right thing. The barrier to it was my own mind. My own pride.
.
But the truth is, those that know me know that this job is not ME. It’s not where my heart is, my heart is in my art. It’s in my camera, it’s in prints and frames and all the little things that no one else even notices. It’s in a photo on canvas on a wall. It’s in my body, and these little tiny acts of activism and fat acceptance that I grow stronger and more vocal about day by day by day.
.
I want my life to make a difference. I want my voice and my eye and my art to MEAN something. And I can’t do that behind the desk of that job. It will never happen. And if I go back, it won’t matter how good my intentions are… I won’t pursue what I should be doing.
.
And I said last night that maybe this is the Universe’s way of giving me the gift of a gift-wrapped excuse. Of telling me that there is MORE to my future than life behind a desk captive to some rich creep’s misplaced priorities.
.
So I will carry my camera. I’ll carry my short lens, and learn to use it and love it. I will open my eyes to the world again in ways I haven’t in a very. very. long time.
.
I will make art. I will make cards. And as I kill the cancer, as I step back into my own space and time and energy and health and life I will go out and do more, shoot more, create more. And maybe when the time comes I won’t need to play by someone else’s rules at all.
.
For once in my life I have a passion and dedication and determination… and a safety net of people gathered behind me to support me while I try.
.
And odds are… I will need to find another job. But I will pick more carefully this time. I will not be caught up in the desperation of the first offer. I will take the time to choose. And I will decide and pursue something that doesn’t want to take over my life… but to supplement it instead.
.
And the universe nods it’s approval and clears the way and steals my excuses and reminds me… my life is worth so. much. more- and it’s time to act in accordance with that.
.
It’s time to make my life extraordinary.
.
And the crux of the issue is, Kris really doesn’t want me to go back to my job at all. So after we were done with dinner and driving home we talked about it a lot more. I told her that I kind of agree with her, but that (especially if I don’t get the Cancer benefit from my insurance) it would mean having to lean on her a lot more until I found something else- and possibly even beyond that if I can’t find something comparable to what I make now. And her response was that we will work it out. That she knows I am good for wahtever would need to ultimately be paid back, and that she just really is not ok with me going back to that job. Especially not after all of this.
.
What it really boils down to is getting it to be right in MY head. I have grown very used to being able to support myself. With a minimum of outside assistance. And it will be hard to be unemployed again after 2 years of such rock steady work. But she made a lot of good points tonight. The real barrier to it isn’t even financial. Kris would support me if I needed it until I found the right thing. The barrier to it was my own mind. My own pride.
.
But the truth is, those that know me know that this job is not ME. It’s not where my heart is, my heart is in my art. It’s in my camera, it’s in prints and frames and all the little things that no one else even notices. It’s in a photo on canvas on a wall. It’s in my body, and these little tiny acts of activism and fat acceptance that I grow stronger and more vocal about day by day by day.
.
I want my life to make a difference. I want my voice and my eye and my art to MEAN something. And I can’t do that behind the desk of that job. It will never happen. And if I go back, it won’t matter how good my intentions are… I won’t pursue what I should be doing.
.
And I said last night that maybe this is the Universe’s way of giving me the gift of a gift-wrapped excuse. Of telling me that there is MORE to my future than life behind a desk captive to some rich creep’s misplaced priorities.
.
So I will carry my camera. I’ll carry my short lens, and learn to use it and love it. I will open my eyes to the world again in ways I haven’t in a very. very. long time.
.
I will make art. I will make cards. And as I kill the cancer, as I step back into my own space and time and energy and health and life I will go out and do more, shoot more, create more. And maybe when the time comes I won’t need to play by someone else’s rules at all.
.
For once in my life I have a passion and dedication and determination… and a safety net of people gathered behind me to support me while I try.
.
And odds are… I will need to find another job. But I will pick more carefully this time. I will not be caught up in the desperation of the first offer. I will take the time to choose. And I will decide and pursue something that doesn’t want to take over my life… but to supplement it instead.
.
And the universe nods it’s approval and clears the way and steals my excuses and reminds me… my life is worth so. much. more- and it’s time to act in accordance with that.
.
It’s time to make my life extraordinary.
Friday, June 29, 2012
Awake Again
Awake. Again.
.
Still.
Whatever.
.
Took a nausea pill but it hasn’t really kicked in yet so things are a little iffy. I don’t understand how it can be possible to be this physically and emotionally tired and still not be able to fall asleep.
.
I’ve had bouts of insomnia throughout most of my life. I’m really kind of a night person anyway so to a certain extent it’s not even necessarily insomnia. Except every few years it happens.
.
The last time it was really really bad (like… not too much worse than this to be honest) was when I moved in with dad after I left UNT. I never slept. There would be times when I would be awake for 36+ hours with not a single nap, or drop off, or pause. I’d write nonstop, I’d watch movies, and I’d feel myself losing touch.
.
I won’t lie that the last few weeks leading up to where I am now- have started to really mimic some of that sensation. I’ve cut caffeine almost completely. I try to wind down at the end of the day, give myself some real dedicated quiet/dark time to ease into it. But all I do is lay in my bed and feel like my skin is crawling. Or like i’m too hot and too cold all at once.
.
and I know, I’m not an idiot: I know treatment is causing at least SOME of that. But the drugs they gave me aren’t working. The only thing that seems to genuinely put me to sleep- is the iv injection of ativan. I take the pill form at night. It doesn’t. do. shit.
.
So I’m exhausted. To the point of added nausea. To the point of depression. To the point of feeling like I can’t function around the moodiness and stress and sheer exhaustion. And it’s not because I’m not tired. Apparently tired has nothing to do with it. And once I do zonk out, I can sleep fairly deeply, even wake up feeling rested to a certain degree. But falling asleep has become something really torturous for me. And I don’t know what to do about it.
.
I have an appt. at the sleep clinic up at UT on the of July. But jesus, how do I even begin to survive that long? emotionally, mentally… fuck that- physically?
.
I just want so desperately to be able to fucking SLEEP.
.
Still.
Whatever.
.
Took a nausea pill but it hasn’t really kicked in yet so things are a little iffy. I don’t understand how it can be possible to be this physically and emotionally tired and still not be able to fall asleep.
.
I’ve had bouts of insomnia throughout most of my life. I’m really kind of a night person anyway so to a certain extent it’s not even necessarily insomnia. Except every few years it happens.
.
The last time it was really really bad (like… not too much worse than this to be honest) was when I moved in with dad after I left UNT. I never slept. There would be times when I would be awake for 36+ hours with not a single nap, or drop off, or pause. I’d write nonstop, I’d watch movies, and I’d feel myself losing touch.
.
I won’t lie that the last few weeks leading up to where I am now- have started to really mimic some of that sensation. I’ve cut caffeine almost completely. I try to wind down at the end of the day, give myself some real dedicated quiet/dark time to ease into it. But all I do is lay in my bed and feel like my skin is crawling. Or like i’m too hot and too cold all at once.
.
and I know, I’m not an idiot: I know treatment is causing at least SOME of that. But the drugs they gave me aren’t working. The only thing that seems to genuinely put me to sleep- is the iv injection of ativan. I take the pill form at night. It doesn’t. do. shit.
.
So I’m exhausted. To the point of added nausea. To the point of depression. To the point of feeling like I can’t function around the moodiness and stress and sheer exhaustion. And it’s not because I’m not tired. Apparently tired has nothing to do with it. And once I do zonk out, I can sleep fairly deeply, even wake up feeling rested to a certain degree. But falling asleep has become something really torturous for me. And I don’t know what to do about it.
.
I have an appt. at the sleep clinic up at UT on the of July. But jesus, how do I even begin to survive that long? emotionally, mentally… fuck that- physically?
.
I just want so desperately to be able to fucking SLEEP.
Work
I was thinking about how weird it will be to go back to work when this is all over. Not just to MY job, assuming I still have one there by that time, but to ANY job.
.
My life, and yes, even my work have been profoundly affected by this for more than a year now. When you factor in all the days I worked in excruciating pain, the mistakes I no doubt made, the changes that rolled out that I couldn’t even bother to pay attention to really, the days I probably should have stayed late but was absolutely physically unable to…
.
And then since April 12th- I haven’t been there at all. In my industry that’s essentially 3 whole cycles of customers so far, to say nothing of the major structural changes that were being made to our way of handling business as I left.
.
When I go back, someone (several someones actually) completely different (and relatively new) will have been handling my customers and my clients during the busiest and most stressful time of our, and their, business year. Can I even GO back to that?
.
I think that Kris (and I won’t deny it… I am too) is kind of hoping that by the time I am cleared to go back to work, my FMLA period will have expired and there won’t even BE a place for me there. I have to admit, that neither of us are entirely opposed to me really and truly getting a FRESH start post-Cancer. There’s a part of me that disagrees with that idea… only because I spent 2 years at this company (the longest I’ve worked for a single company EVER, generally by no fault of my own), and I have really worked hard and made some major, MAJOR turnarounds with some of our biggest name clients. There are definitely companies that work with us, and started to finally increase the business they give us-becauseof me. I have one client that I am fairly sure is not sending us any moves right now. Because she hates our company- but loves me. (If I ever move to NJ… she’s even offered me a job. That won’t happen, I like TX too much).
.
I am the one that gets handed the problem children. Which is funny because out of all of the folks that were there and arrived after me for a long time? I was the one with the least related experience. But I have a knack for people, and for figuring out what my clients really actually need. And then doing it. And being a human being about it. And that made a huge difference. There is an account that we have been on the verge of losing pretty much since 6 months after they signed with us. I not only saved the relationship, but we started receiving new (and returning had been gone) sub-clients from them.
.
And there is a part of me that is so insanely proud of that and hates the thought of not having that opportunity anymore. I do, and would, miss my clients. Genuinely. Some of my accounts and the people I work with there, I have genuine affection for and already miss quite a bit.
.
But on the other hand, this job is a bit torturous. That’s not really an exaggeration. The hours in the summer tend to range from 10-12-14. It’s a 24-7 job. It means having a dedicated (must be answered) cell phone, and a laptop that comes home on weekends.
.
Sometimes it means not seeing friends or family because you have to leave an event to deal with a crisis. That’s just the way it is. And it sucks. The stress attached with this job is phenomenal… unhealthy even for someone like myself who has trouble leaving things unfinished and unresolved. Before I got sick I’d managed to find a kind of relatively decent balance with it all. But it didn’t change the fact that the job was having an effect on my stress and on my whole life really.
.
Is that something I want to go back to?
Especially after all of this, seeing how important my LIFE and my sanity and my health really are?
.
I don’t know the answer to that right now.
.
I have known for… 6-8 years now that an office job is not where I will spend the rest of my working life. At some point, I will be able to live off of my photography- I know this. So the question becomes- do I go back (if I even can) and work until I can drum up the photography side of my career on the side and hope that doesn’t take another 5 years?
.
Or: do I let this be a chance to really and truly start over? Do I not go back but instead… find something I can do from home feasibly. Find something where the hours are better regulated and don’t have the kind of out-of-office commitment that this does so that I HAVE the time to dedicate to becoming a better and better known photographer? Or… do I chuck it all for awhile and let Kris help me and focus all of my post-treatment energy on really building up my life as a photographer? Spending the time I would spend at a day job going out and shooting and getting my work OUT in the world where it can get seen and appreciated and ultimately— represented, marketed, and sold.
.
I know once I can get back into the swing of my art fiscal stability is possible on just my art alone. I know what I’m capable of is good enough for that.
.
The truth is… this may all be a moot point. I’m not precisely sure when my FMLAisup. I’m calling in to HR tomorrow to give them the latest update. But right now, my tentative back to work date is August 6th as per my Oncology Nurse. The sheer fact of the matter is- I may not have a job to go back to by then. And then it becomes a decision for me, and for Kris, and for my family who would no doubt have to be helpful and supportive of the downtime as to what route I take from there.
.
I don’t know what the answer is.
.
But either way… if I go one of the traditional “job” routes- it will be very weird to follow someone else’s rules again, and to not be in charge of my time anymore. The treatment schedule runs me for about an hour every day… 6-7 hours on Thursdays. But outside of that- I am limited only by my energy and the severity of the side effects. At the very least I have the time and access to write, to do small scale photography projects, to play games, to relax, to rest, to read and learn and participate in discussions and even arguments that I haven’t had the energy or time to do in the last 2 years that I’ve been with my company.
.
And I have to admit, I kind of enjoy that freedom- who wouldn’t? I’d prefer that I had the energy to use this time to force myself out to take photos- but my body has other ideas about that right now. :shrug:
.
Like I said, I don’t know what the answer is. It may get decided FOR me in the end.
.
But either way, I’ll be ok. My future is bright and waiting. And I will get my Cancer-free bill of health, and I will do whatever I need to do to make that life worthwhile in a way I hadn’t before.
.
In the meantime… I’m hoping this won’t be ANOTHER sleepless night. A 4 hour nap during chemo does not wipe out a completely sleepless night before. We’ll see.
.
I am worth so much more than I believed I was when I took this job in 2010. My life is worth so much more. Maybe it’s time to put some faith in the universe and believe that this is making way and clearing a path for me to do what I’m really supposed to be doing. :shrug:
.
My life, and yes, even my work have been profoundly affected by this for more than a year now. When you factor in all the days I worked in excruciating pain, the mistakes I no doubt made, the changes that rolled out that I couldn’t even bother to pay attention to really, the days I probably should have stayed late but was absolutely physically unable to…
.
And then since April 12th- I haven’t been there at all. In my industry that’s essentially 3 whole cycles of customers so far, to say nothing of the major structural changes that were being made to our way of handling business as I left.
.
When I go back, someone (several someones actually) completely different (and relatively new) will have been handling my customers and my clients during the busiest and most stressful time of our, and their, business year. Can I even GO back to that?
.
I think that Kris (and I won’t deny it… I am too) is kind of hoping that by the time I am cleared to go back to work, my FMLA period will have expired and there won’t even BE a place for me there. I have to admit, that neither of us are entirely opposed to me really and truly getting a FRESH start post-Cancer. There’s a part of me that disagrees with that idea… only because I spent 2 years at this company (the longest I’ve worked for a single company EVER, generally by no fault of my own), and I have really worked hard and made some major, MAJOR turnarounds with some of our biggest name clients. There are definitely companies that work with us, and started to finally increase the business they give us-becauseof me. I have one client that I am fairly sure is not sending us any moves right now. Because she hates our company- but loves me. (If I ever move to NJ… she’s even offered me a job. That won’t happen, I like TX too much).
.
I am the one that gets handed the problem children. Which is funny because out of all of the folks that were there and arrived after me for a long time? I was the one with the least related experience. But I have a knack for people, and for figuring out what my clients really actually need. And then doing it. And being a human being about it. And that made a huge difference. There is an account that we have been on the verge of losing pretty much since 6 months after they signed with us. I not only saved the relationship, but we started receiving new (and returning had been gone) sub-clients from them.
.
And there is a part of me that is so insanely proud of that and hates the thought of not having that opportunity anymore. I do, and would, miss my clients. Genuinely. Some of my accounts and the people I work with there, I have genuine affection for and already miss quite a bit.
.
But on the other hand, this job is a bit torturous. That’s not really an exaggeration. The hours in the summer tend to range from 10-12-14. It’s a 24-7 job. It means having a dedicated (must be answered) cell phone, and a laptop that comes home on weekends.
.
Sometimes it means not seeing friends or family because you have to leave an event to deal with a crisis. That’s just the way it is. And it sucks. The stress attached with this job is phenomenal… unhealthy even for someone like myself who has trouble leaving things unfinished and unresolved. Before I got sick I’d managed to find a kind of relatively decent balance with it all. But it didn’t change the fact that the job was having an effect on my stress and on my whole life really.
.
Is that something I want to go back to?
Especially after all of this, seeing how important my LIFE and my sanity and my health really are?
.
I don’t know the answer to that right now.
.
I have known for… 6-8 years now that an office job is not where I will spend the rest of my working life. At some point, I will be able to live off of my photography- I know this. So the question becomes- do I go back (if I even can) and work until I can drum up the photography side of my career on the side and hope that doesn’t take another 5 years?
.
Or: do I let this be a chance to really and truly start over? Do I not go back but instead… find something I can do from home feasibly. Find something where the hours are better regulated and don’t have the kind of out-of-office commitment that this does so that I HAVE the time to dedicate to becoming a better and better known photographer? Or… do I chuck it all for awhile and let Kris help me and focus all of my post-treatment energy on really building up my life as a photographer? Spending the time I would spend at a day job going out and shooting and getting my work OUT in the world where it can get seen and appreciated and ultimately— represented, marketed, and sold.
.
I know once I can get back into the swing of my art fiscal stability is possible on just my art alone. I know what I’m capable of is good enough for that.
.
The truth is… this may all be a moot point. I’m not precisely sure when my FMLAisup. I’m calling in to HR tomorrow to give them the latest update. But right now, my tentative back to work date is August 6th as per my Oncology Nurse. The sheer fact of the matter is- I may not have a job to go back to by then. And then it becomes a decision for me, and for Kris, and for my family who would no doubt have to be helpful and supportive of the downtime as to what route I take from there.
.
I don’t know what the answer is.
.
But either way… if I go one of the traditional “job” routes- it will be very weird to follow someone else’s rules again, and to not be in charge of my time anymore. The treatment schedule runs me for about an hour every day… 6-7 hours on Thursdays. But outside of that- I am limited only by my energy and the severity of the side effects. At the very least I have the time and access to write, to do small scale photography projects, to play games, to relax, to rest, to read and learn and participate in discussions and even arguments that I haven’t had the energy or time to do in the last 2 years that I’ve been with my company.
.
And I have to admit, I kind of enjoy that freedom- who wouldn’t? I’d prefer that I had the energy to use this time to force myself out to take photos- but my body has other ideas about that right now. :shrug:
.
Like I said, I don’t know what the answer is. It may get decided FOR me in the end.
.
But either way, I’ll be ok. My future is bright and waiting. And I will get my Cancer-free bill of health, and I will do whatever I need to do to make that life worthwhile in a way I hadn’t before.
.
In the meantime… I’m hoping this won’t be ANOTHER sleepless night. A 4 hour nap during chemo does not wipe out a completely sleepless night before. We’ll see.
.
I am worth so much more than I believed I was when I took this job in 2010. My life is worth so much more. Maybe it’s time to put some faith in the universe and believe that this is making way and clearing a path for me to do what I’m really supposed to be doing. :shrug:
Thursday, June 28, 2012
Rest
So Frustrating.
.
You know the one bonus of being sick? Resting. Resting a LOT.
.
But you know what I am incapable of doing? At night or otherwise? FUCKING RESTING.
.
I AM SO GODDAMNED TIRED that I can barely breathe. But can I sleep? Nope. Not for me.
.
I can’t even get in for a consultation with the sleep cllinic at UT until JULY 10TH. JULY 10TH. This has been going on for weeks. The double anxiety med combo didn’t work. The ambien + anxiety pill combo didn’t work. I am so fucking tired. I need something that will just knock me out. GIVE ME A FUCKING TRANQUILIZER. At this point, I’m actually kind of serious about that.
.
I need. TO SLEEP.
.
For more than just… a couple hours during chemo. I can’t DO this. I am having a hard enough time dealing with all of this shit without having to do it WITH insomnia. FUCK.
.
You want the truth about all of this? The unadulterated truth? It fucking sucks.
.
My body aches. My stomach is completely fucked up. I have almost zero appetite most of the time… except that when I do get hungry I get fucking ravenous, then when I get the food that I think will fill me up- I can only eat .. mm.. a third of it or else I know (from learning the hard way) that I will end up in pain because no matter how hungry I feel when I start? There is not enough room in my stomach for the food to fill how hungry I am. How fucked up is that? If I eat until the actual moment when I finally feel full- I will be completely fucking miserable within an hour.
.
So I eat like once a day. Sometimes twice. Today I actually got lucky, had a burger, a chunk of watermelon, a banana pudding cup, and then dinner. But that… is super unusual.
.
And I am so fucking exhuasted. Oh wait, did I say that already? I’m tired of feeling like my skin is crawling. I’m tired of being uncomfortable, I’m tired of it. I lived in constant pain for like a year. I DON’T FUCKING DESERVE THIS.
.
And as if it isn’t fucking obnoxious ENOUGH to be me right now: I have a shit-ton of mosquito bites. Which normally would just be annoying- except my skin now HATES them with an unmatched fury. Which means that surrounding each bite I now have giant red blotches… even around the ones I’ve managed not to itch.
.
Yes, this whole post is me bitching and complaining. Problem? Unfollow. I need a place to fucking complaining.
.
FUCK THIS SHIT. I JUST WANT TO FUCKING SLEEP.
.
You know the one bonus of being sick? Resting. Resting a LOT.
.
But you know what I am incapable of doing? At night or otherwise? FUCKING RESTING.
.
I AM SO GODDAMNED TIRED that I can barely breathe. But can I sleep? Nope. Not for me.
.
I can’t even get in for a consultation with the sleep cllinic at UT until JULY 10TH. JULY 10TH. This has been going on for weeks. The double anxiety med combo didn’t work. The ambien + anxiety pill combo didn’t work. I am so fucking tired. I need something that will just knock me out. GIVE ME A FUCKING TRANQUILIZER. At this point, I’m actually kind of serious about that.
.
I need. TO SLEEP.
.
For more than just… a couple hours during chemo. I can’t DO this. I am having a hard enough time dealing with all of this shit without having to do it WITH insomnia. FUCK.
.
You want the truth about all of this? The unadulterated truth? It fucking sucks.
.
My body aches. My stomach is completely fucked up. I have almost zero appetite most of the time… except that when I do get hungry I get fucking ravenous, then when I get the food that I think will fill me up- I can only eat .. mm.. a third of it or else I know (from learning the hard way) that I will end up in pain because no matter how hungry I feel when I start? There is not enough room in my stomach for the food to fill how hungry I am. How fucked up is that? If I eat until the actual moment when I finally feel full- I will be completely fucking miserable within an hour.
.
So I eat like once a day. Sometimes twice. Today I actually got lucky, had a burger, a chunk of watermelon, a banana pudding cup, and then dinner. But that… is super unusual.
.
And I am so fucking exhuasted. Oh wait, did I say that already? I’m tired of feeling like my skin is crawling. I’m tired of being uncomfortable, I’m tired of it. I lived in constant pain for like a year. I DON’T FUCKING DESERVE THIS.
.
And as if it isn’t fucking obnoxious ENOUGH to be me right now: I have a shit-ton of mosquito bites. Which normally would just be annoying- except my skin now HATES them with an unmatched fury. Which means that surrounding each bite I now have giant red blotches… even around the ones I’ve managed not to itch.
.
Yes, this whole post is me bitching and complaining. Problem? Unfollow. I need a place to fucking complaining.
.
FUCK THIS SHIT. I JUST WANT TO FUCKING SLEEP.
Still Awake
I have to be at UT at 7:30am for chemo. I am STILL FUCKING AWAKE.
.
Why? Because once again I can’t get comfortable. I’m hot, I’m cold, I’m nauseated…. but not quite.
.
I can’t get into the sleep clinic until July 10th and I am not going to make it that fucking long. I’m just not. This is psychotic. A “nap” during infusion is not going to be enough, it’s just not. fuck.
.
FUCK FUCK FUCK FUCK FUCK FUCK FUCK
.
Why? Because once again I can’t get comfortable. I’m hot, I’m cold, I’m nauseated…. but not quite.
.
I can’t get into the sleep clinic until July 10th and I am not going to make it that fucking long. I’m just not. This is psychotic. A “nap” during infusion is not going to be enough, it’s just not. fuck.
.
FUCK FUCK FUCK FUCK FUCK FUCK FUCK
Wednesday, June 27, 2012
Dear Cancer Center
Dear Cancer Center,
.
I don’t know how to make this clearer. I am your patient. I have Uterine Cancer. I am doing daily radiation Monday through Friday. I am supposed to have Chemo every Thursday.
.
I also have a severe (but until recently well-managed) anxiety disorder. It’s called, social anxiety. What that means (since the last nurse I told didn’t seem to get it) is that when it comes to new or newer experiences, when it comes to new routines, and new schedules, and new people: I need some structure. And I need some pre-planning. I need to know what is going to happen ahead of time. Or at least, what TIME it is going to happen.
.
If things get changed last minute, or don’t get set up correct in the first place? I tend to flip out.
.
I am supposed to have Chemo tomorrow. But NO ONE HAS TOLD ME WHAT FUCKING TIME TO BE THERE. I am also supposed to have radiation tomorrow. THAT is scheduled for 1pm. And now, it is SET at 1pm because no one ever called me back to tell me what time I should move it to so that it doesn’t interfere with my imaginary chemo appointment.
.
I CANNOT DEAL WITH THIS.
.
Cancer Center, you have to do better than this. Because I am freaking out. I am already a giant ball of anxious, and shit like this MAKES IT 10000% WORSE.
.
Please call me back. Even though it’s after 5pm. Because I am about an inch away from a full blown panic attack and the worst part is I STILL DON’T FUCKING KNOW WHAT TIME I HAVE TO BE THERE TOMORROW.
.
I need you to help me. If you want me to have a good blood pressure tomorrow, and you want me to have any chance of relaxing for my blood draw, or finding my port on the first try, I have to know what is going to happen and when.
.
I do not have the energy for this panic attack. It could easily have been avoided. PLEASE HELP ME OUT.
.
ffs you do this all day every day, it isn’t that damn hard!
.
Sincerely,
Me. Having the panic attack. And still not knowing what time I have to be there TOMORROW.
.
I don’t know how to make this clearer. I am your patient. I have Uterine Cancer. I am doing daily radiation Monday through Friday. I am supposed to have Chemo every Thursday.
.
I also have a severe (but until recently well-managed) anxiety disorder. It’s called, social anxiety. What that means (since the last nurse I told didn’t seem to get it) is that when it comes to new or newer experiences, when it comes to new routines, and new schedules, and new people: I need some structure. And I need some pre-planning. I need to know what is going to happen ahead of time. Or at least, what TIME it is going to happen.
.
If things get changed last minute, or don’t get set up correct in the first place? I tend to flip out.
.
I am supposed to have Chemo tomorrow. But NO ONE HAS TOLD ME WHAT FUCKING TIME TO BE THERE. I am also supposed to have radiation tomorrow. THAT is scheduled for 1pm. And now, it is SET at 1pm because no one ever called me back to tell me what time I should move it to so that it doesn’t interfere with my imaginary chemo appointment.
.
I CANNOT DEAL WITH THIS.
.
Cancer Center, you have to do better than this. Because I am freaking out. I am already a giant ball of anxious, and shit like this MAKES IT 10000% WORSE.
.
Please call me back. Even though it’s after 5pm. Because I am about an inch away from a full blown panic attack and the worst part is I STILL DON’T FUCKING KNOW WHAT TIME I HAVE TO BE THERE TOMORROW.
.
I need you to help me. If you want me to have a good blood pressure tomorrow, and you want me to have any chance of relaxing for my blood draw, or finding my port on the first try, I have to know what is going to happen and when.
.
I do not have the energy for this panic attack. It could easily have been avoided. PLEASE HELP ME OUT.
.
ffs you do this all day every day, it isn’t that damn hard!
.
Sincerely,
Me. Having the panic attack. And still not knowing what time I have to be there TOMORROW.
Sunday, June 24, 2012
Did Not
I did not call SuperTherapist today. I was going to. I told my Oncologist NP I was going to. I told Kris I was going to. I told Libby and Dad too.
.
But I didn’t.
.
I didn’t even get UP until 2pm. And I spent most of my day trying to pretend nothing is wrong. Except it is wrong.
.
Everything is sore. Everything. Especially my lower abdomen. jesus. You’d think I’d done crunches except it’s not even like… exercise sore it’s like… sore and vaguely uncomfortable and I know that’s radiation related because they told me it would happen.
.
My hair’s texture is completely weird. Like, overnight… totally different.
.
I’m fucking exhuasted. My whole body is tired and even though I keep trying to power through it and ignore it, it’s just always there this… hit-by-a-train exhuastion.
.
My port is so… present right now. There’s this one tiny corner from the incision that I am having to fight so hard not to pick at. Because the picker in me just wants to pick pick pick pick pick at any loose end and i’ve popped all my damn zits and itched open every mosquito bite which is a whole different level of annoyance.
.
And I didn’t call SuperTherapist because I don’t know what to SAY. I don’t know. I don’t fucking know. Hey, so, I guess I should come in… even though I can’t pay you right now, and talk about having Cancer even though I don’t really know what to say about it, and about getting treatment which everyone already knows is going to suck so what is there really to talk about…
.
But everyone says… you have to imagine that the medication is tigers in your blood, tearing at the cancer and destroying it. You have to imagine warriors in your blood. But it’s not… it’s poison. It’s poison in my body that kills the thing that tries to kill me except while it does that… it kills me a little too and if we’re lucky (and in my case odds are we will be).. if we’re lucky the Cancer will die before I do and everything will be right with the world except for the part that for the rest of my life I’m the girl who had Cancer.
.
Which I suppose, is better than being the girl who died of Cancer.
.
So what do I say to SuperTherapist? What am I supposed to talk about? Am I supposed to go in and shed all the fucking tears I can’t in front of other people? To bitch and whine and moan about how bad I have it when I know there are people who have it so much fucking worse?
.
What can she do for me? What can anyone do but throw me another prescription to handle whatever side effect comes next?
.
I’m not some tragic Cancer victim like you cry over in a fucking Jodi Picoult novel. I don’t deserve anyone’s pity. I’m not going to die from this. I mean, I’m probably not going to die from this. And my father asks the question I haven’t asked them yet: how do we know it’s done? How do we know it worked?
.
But I try not to think about it. About what happens in 5 years if it comes back. What happens if we go merrily along thinking this worked but it moves and we don’t catch it again in time. Because how the fuck do we know? I had to fucking hemmorage in her office before they even found the tumor in the first place and that was after 3 physical exams and a D&C… so tell me… what’s the marker here? What is our tell-tale sign?
.
Is this what I should be talking about? About how depressed I feel? How anxious? How fucking scared I am that for the rest of my life I’m going to have to constantly be worried that maybe it comes back and nobody can see it?
.
And how does she help me with that exactly? Is she going to wave a magic wand and install some kind of… Cancer Detector? This is my Cancery-wancery detector, it goes ding when there’s stuff. I mean.. what am I supposed to do exactly?
.
And at the end of the summer, when I (presumeably) get this clean bill of health… am I supposed to just… walk back into work (if they’ll have me) and pretend it didn’t happen? Pretend that I haven’t seen that I deserve better than that fucking stressful thankless job that ran my life before Cancer? Am I supposed to finish this up and then step back into all that stress for the next year? or 2? or 5? How the hell do I do that?
How do I pretend to give a shit if some executives car takes an extra day to get from NY to San Diego and don’t I know he can’t be seen in a rental at his new fancy job and I just finished fighting for my goddamn life and losing everything inside me that could have produced a living, breathing, person that I may or may not have wanted someday? And who gives a SHIT.
.
I have a lot of anger these days. A lot of fear. A lot of uncertainty. And I’ve had 2 doses of radiation, and one dose of chemo and if this is what it’s like after 2 and 1 then jesus… 5 weeks later is going to be absolute shit.
.
It’s all well and good and powerful and hopeful when it’s fucking theoretical. But it’s not that many steps from… oh my hair’s different… to oh my hair’s gone. And maybe this is what I should be talking about with SuperTherapist except I can’t seem to bring myself to pick up the phone.
.
And when people ask how I am I want to scream, “I HAVE FUCKING CANCER AND IT SUCKS HOW THE FUCK DO YOU THINK I AM” but instead I just say, “fine, it’s fine, I’m going to be fine.” Except I don’t even know what that word means anymore and at least when I was fucked up in the head I felt like I had some control but my body doesn’t LISTEN to me anymore. And even if I plow on through and make it through dinner… there’s still me dead asleep on the ride home and blazed awake at night when I should be sleeping because my second winds keep coming to me at the wrong times and they’re too goddamn short anyway to be of much use to begin with.
.
And I’m torn between telling the truth, and keeping up the lie that everything is fine. Because I don’t want people to think… oh it’s no big deal… but I don’t want their Cancer-Pity either and I don’t know how to draw that line without screaming and I just want so desperately to go to bed and have someone just wake me up when it’s over. Just wake me up when my life can start again ok? My body can fight Cancer on it’s own and I’ll just be here sleeping so wake me up when it’s ready… I’m changing my name to Aurora and I’ll be here in this tower waiting so just send a pretty girl my way and tell her to kiss me awake when she’s done fighting my Maleficent.
.
I want to be sleeping beauty, and prick my finger with a chemo stick and sleep while it fights without me, rest while around me everything else is in turmoil and just wake up for the hero’s entrance at the end. Let my heroine wake me with a kiss and I will figure out how to deal with my changed body, and my tired limbs, and my poisoned blood and as long as I don’t have to do the fighting it will all be ok.
.
Call me Aurora and sing me a lullabye and when I wake up drain the poison from my blood and pour it into an apple for another fairy tale. I just want to sleep until it’s over, and then I can start again.
.
But I didn’t.
.
I didn’t even get UP until 2pm. And I spent most of my day trying to pretend nothing is wrong. Except it is wrong.
.
Everything is sore. Everything. Especially my lower abdomen. jesus. You’d think I’d done crunches except it’s not even like… exercise sore it’s like… sore and vaguely uncomfortable and I know that’s radiation related because they told me it would happen.
.
My hair’s texture is completely weird. Like, overnight… totally different.
.
I’m fucking exhuasted. My whole body is tired and even though I keep trying to power through it and ignore it, it’s just always there this… hit-by-a-train exhuastion.
.
My port is so… present right now. There’s this one tiny corner from the incision that I am having to fight so hard not to pick at. Because the picker in me just wants to pick pick pick pick pick at any loose end and i’ve popped all my damn zits and itched open every mosquito bite which is a whole different level of annoyance.
.
And I didn’t call SuperTherapist because I don’t know what to SAY. I don’t know. I don’t fucking know. Hey, so, I guess I should come in… even though I can’t pay you right now, and talk about having Cancer even though I don’t really know what to say about it, and about getting treatment which everyone already knows is going to suck so what is there really to talk about…
.
But everyone says… you have to imagine that the medication is tigers in your blood, tearing at the cancer and destroying it. You have to imagine warriors in your blood. But it’s not… it’s poison. It’s poison in my body that kills the thing that tries to kill me except while it does that… it kills me a little too and if we’re lucky (and in my case odds are we will be).. if we’re lucky the Cancer will die before I do and everything will be right with the world except for the part that for the rest of my life I’m the girl who had Cancer.
.
Which I suppose, is better than being the girl who died of Cancer.
.
So what do I say to SuperTherapist? What am I supposed to talk about? Am I supposed to go in and shed all the fucking tears I can’t in front of other people? To bitch and whine and moan about how bad I have it when I know there are people who have it so much fucking worse?
.
What can she do for me? What can anyone do but throw me another prescription to handle whatever side effect comes next?
.
I’m not some tragic Cancer victim like you cry over in a fucking Jodi Picoult novel. I don’t deserve anyone’s pity. I’m not going to die from this. I mean, I’m probably not going to die from this. And my father asks the question I haven’t asked them yet: how do we know it’s done? How do we know it worked?
.
But I try not to think about it. About what happens in 5 years if it comes back. What happens if we go merrily along thinking this worked but it moves and we don’t catch it again in time. Because how the fuck do we know? I had to fucking hemmorage in her office before they even found the tumor in the first place and that was after 3 physical exams and a D&C… so tell me… what’s the marker here? What is our tell-tale sign?
.
Is this what I should be talking about? About how depressed I feel? How anxious? How fucking scared I am that for the rest of my life I’m going to have to constantly be worried that maybe it comes back and nobody can see it?
.
And how does she help me with that exactly? Is she going to wave a magic wand and install some kind of… Cancer Detector? This is my Cancery-wancery detector, it goes ding when there’s stuff. I mean.. what am I supposed to do exactly?
.
And at the end of the summer, when I (presumeably) get this clean bill of health… am I supposed to just… walk back into work (if they’ll have me) and pretend it didn’t happen? Pretend that I haven’t seen that I deserve better than that fucking stressful thankless job that ran my life before Cancer? Am I supposed to finish this up and then step back into all that stress for the next year? or 2? or 5? How the hell do I do that?
How do I pretend to give a shit if some executives car takes an extra day to get from NY to San Diego and don’t I know he can’t be seen in a rental at his new fancy job and I just finished fighting for my goddamn life and losing everything inside me that could have produced a living, breathing, person that I may or may not have wanted someday? And who gives a SHIT.
.
I have a lot of anger these days. A lot of fear. A lot of uncertainty. And I’ve had 2 doses of radiation, and one dose of chemo and if this is what it’s like after 2 and 1 then jesus… 5 weeks later is going to be absolute shit.
.
It’s all well and good and powerful and hopeful when it’s fucking theoretical. But it’s not that many steps from… oh my hair’s different… to oh my hair’s gone. And maybe this is what I should be talking about with SuperTherapist except I can’t seem to bring myself to pick up the phone.
.
And when people ask how I am I want to scream, “I HAVE FUCKING CANCER AND IT SUCKS HOW THE FUCK DO YOU THINK I AM” but instead I just say, “fine, it’s fine, I’m going to be fine.” Except I don’t even know what that word means anymore and at least when I was fucked up in the head I felt like I had some control but my body doesn’t LISTEN to me anymore. And even if I plow on through and make it through dinner… there’s still me dead asleep on the ride home and blazed awake at night when I should be sleeping because my second winds keep coming to me at the wrong times and they’re too goddamn short anyway to be of much use to begin with.
.
And I’m torn between telling the truth, and keeping up the lie that everything is fine. Because I don’t want people to think… oh it’s no big deal… but I don’t want their Cancer-Pity either and I don’t know how to draw that line without screaming and I just want so desperately to go to bed and have someone just wake me up when it’s over. Just wake me up when my life can start again ok? My body can fight Cancer on it’s own and I’ll just be here sleeping so wake me up when it’s ready… I’m changing my name to Aurora and I’ll be here in this tower waiting so just send a pretty girl my way and tell her to kiss me awake when she’s done fighting my Maleficent.
.
I want to be sleeping beauty, and prick my finger with a chemo stick and sleep while it fights without me, rest while around me everything else is in turmoil and just wake up for the hero’s entrance at the end. Let my heroine wake me with a kiss and I will figure out how to deal with my changed body, and my tired limbs, and my poisoned blood and as long as I don’t have to do the fighting it will all be ok.
.
Call me Aurora and sing me a lullabye and when I wake up drain the poison from my blood and pour it into an apple for another fairy tale. I just want to sleep until it’s over, and then I can start again.
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