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.
Saturday, June 30, 2012
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.
Thursday, June 21, 2012
2 Years
When I was waiting to go back for the xrays on Tuesday, there were women coming and going to their own treatments in the “dressing area.” And one of the women as I was finally leaving started chatting with me, which was unfortunate for her because I’m awkward as hell, even worse when I’m as anxious as I was.
.
But she asked what “round” I was on and I said that I hadn’t actually started and wouldn’t until Thursday. She said she had been doing radiation for 2 years.
.
Two. Years.
.
And even though I’m relatively certain this is not a 2 year thing for me… I think that was the first time that it really clicked in my head how bad this is. How bad it could have been. Tonight, I made the mistake of googling cisplatin which is the chemo I’ll be getting starting at 9am today. I watched a couple of videos, looked through some terrifying photos and read a couple of people’s blog posts about receiving it as treatment. Most of the posts I found were more side-effect focused, but nonetheless all I’ve really managed to do is re-affirm just how incredibly serious this whole Cancer thing is about to get.
.
You’d think the hemorrhaging in the Oncologists office would have done it… or the hysterectomy, or the infection, or even the port implant. But no. It was some random stranger confessing she was in year 2 of her radiation treatment.
.
I don’t know what kind of Cancer she has, or how widespread it was, or what else they’ve done for her. But hearing 2 years… broke me in a whole different way for some reason. And for the first time I am really not sure if I am actually strong enough to do this.
.
I know people will fire back, “of course you are,” and “you are, you know it” and “you’ve got this beat,” and I love the confidence, and I say it often too, even now. But honestly ever since Tuesday, in this very small, very quiet but very… pervasive part of my mind all I can think is, “I can’t do this.” Because I am just so very incredibly scared.
.
I’ve lived through my share of shit, more than my share really as those in the know will readily agree. I fought hard to get to this unbroken space in my head and in my heart. And if I’m honest, if I’m reallyreallyhonest… when that woman told me she’d been doing this for 2 years… there was a piece of me that broke again. In 5 and a half weeks this should all (presumably) be pretty much over. In 8 weeks it should be completely done. But I’ve said should before in this journey and shoulds haven’t really worked out that well in practice for me this year.
.
I’ll fight it because I have to. I’ll fight it because I have no other choice. I’ll fight it because I’m not interested in laying down and giving up the life that I have already fought so hard to achieve.
.
But if I’m really really honest… right this second, right now… there is a big broken piece of me that half-believes it won’t work. And I am more terrified of that than of anything else in my entire life. Because what if I just don’t have enough battles left in me? What if I’m just… done?
.
What if it doesn’t work?
.
Could I go through it all again? Could I be the woman in the room fighting for two years?
.
No. In all honesty, I don’t think I could.
.
So what if it doesn’t work?
.
.
.
.
.
.
See. I told you.
Broken.
.
But she asked what “round” I was on and I said that I hadn’t actually started and wouldn’t until Thursday. She said she had been doing radiation for 2 years.
.
Two. Years.
.
And even though I’m relatively certain this is not a 2 year thing for me… I think that was the first time that it really clicked in my head how bad this is. How bad it could have been. Tonight, I made the mistake of googling cisplatin which is the chemo I’ll be getting starting at 9am today. I watched a couple of videos, looked through some terrifying photos and read a couple of people’s blog posts about receiving it as treatment. Most of the posts I found were more side-effect focused, but nonetheless all I’ve really managed to do is re-affirm just how incredibly serious this whole Cancer thing is about to get.
.
You’d think the hemorrhaging in the Oncologists office would have done it… or the hysterectomy, or the infection, or even the port implant. But no. It was some random stranger confessing she was in year 2 of her radiation treatment.
.
I don’t know what kind of Cancer she has, or how widespread it was, or what else they’ve done for her. But hearing 2 years… broke me in a whole different way for some reason. And for the first time I am really not sure if I am actually strong enough to do this.
.
I know people will fire back, “of course you are,” and “you are, you know it” and “you’ve got this beat,” and I love the confidence, and I say it often too, even now. But honestly ever since Tuesday, in this very small, very quiet but very… pervasive part of my mind all I can think is, “I can’t do this.” Because I am just so very incredibly scared.
.
I’ve lived through my share of shit, more than my share really as those in the know will readily agree. I fought hard to get to this unbroken space in my head and in my heart. And if I’m honest, if I’m reallyreallyhonest… when that woman told me she’d been doing this for 2 years… there was a piece of me that broke again. In 5 and a half weeks this should all (presumably) be pretty much over. In 8 weeks it should be completely done. But I’ve said should before in this journey and shoulds haven’t really worked out that well in practice for me this year.
.
I’ll fight it because I have to. I’ll fight it because I have no other choice. I’ll fight it because I’m not interested in laying down and giving up the life that I have already fought so hard to achieve.
.
But if I’m really really honest… right this second, right now… there is a big broken piece of me that half-believes it won’t work. And I am more terrified of that than of anything else in my entire life. Because what if I just don’t have enough battles left in me? What if I’m just… done?
.
What if it doesn’t work?
.
Could I go through it all again? Could I be the woman in the room fighting for two years?
.
No. In all honesty, I don’t think I could.
.
So what if it doesn’t work?
.
.
.
.
.
.
See. I told you.
Broken.
Wednesday, June 20, 2012
And now for something...
A little more serious.
.
So today was what I thought was going to be radiation day 1, but ended up just being a shit-ton of xrays to finalize the line up and markings for treatment which starts on Thursday with my Chemo.
.
But because it was x-rays and done through the radiation department I kind of got the walk-through for what the process will be for radiation on Thursday. They came upstairs to get me after check in but Thursday I just check in and go right downstairs to the changing area. I put on 2 gowns (so my butt is covered) and then wait in the little dressing area chairs until they come to get me.
.
And I feel like maybe I need a button or a sign or something that says, “I’m not rude, I’m just really introverted, I have social anxiety, and I have no idea how to talk to people.” Because like… 2 different women tried talking to me and I just like… shut down. I tried to be polite but at the same time (I still thought radiation was starting at that point) my head was completely reeling with all the scared and anxious and lack of sleep.
.
These women joked and laughed and asked each other questions and I just sat there with my awkward pants on and tried not to freak out. One woman (probably in her… late 50s to maybe mid 60s … I suck at guessing people’s ages) looked at my head and said, “Oh you’re hair is coming back in really nicely!” and I just blurted out, “Oh, I just cut it way down a few weeks ago… I don’t really start anything until Thursday so…” but it just felt so … I don’t know.
.
All of the women I saw today were at LEAST 15-20 years (or more) older than I am. And I just felt like a fucking baby sitting there.. gutted like many of them probably are… scared and uninformed and completely useless socially besides.
.
And one woman was asking about my course of treatment and was talking about how she’d been doing this for 2 years. TWO. YEAAAAARS.
.
I didn’t even know what to say I just… nodded politely and continued heading on my way. I just… :deep breath:.
.
But seriously, I need a sign to put around my neck that just says… “give me time, I’ll warm up.. but right now I’m scared and anxious and overwhelmed and trying to talk to even 1 person I don’t know is way over my threshold so please respect my silence.”
.
I will be putting together my chemo bag tomorrow with this kind of interaction in mind because from what I understand I will basically be in a room with several other strangers for like… 5-6 hours on Thursday and while I may be able to untie my tongue by.. hour 4 or so… the start of all of this so not goign to be a social hour for me, there is no way I can handle that.
.
I bought headphones, and I’ll bring my laptop and my e-reader and the plug for my phone charger so I can listen to music on it. Hopefully people will just… understand and not push me on trying to socialize the first couple of sessions. I am so at my limit right now. Honestly, I almost freaked out just dealing with the radiation techs today and I barely had much interaction at all outside of a few instructions and tips and then being told to keep holding still.
.
But seriously, right now my big nightmare isn’t even the chemo infusion itself, it’s sitting in a room with a bunch of people I don’t know and being like… ushered into the Cancer-Chemo Community before I can process it all my own way.
.
Lots to process right now. blegh.
.
So today was what I thought was going to be radiation day 1, but ended up just being a shit-ton of xrays to finalize the line up and markings for treatment which starts on Thursday with my Chemo.
.
But because it was x-rays and done through the radiation department I kind of got the walk-through for what the process will be for radiation on Thursday. They came upstairs to get me after check in but Thursday I just check in and go right downstairs to the changing area. I put on 2 gowns (so my butt is covered) and then wait in the little dressing area chairs until they come to get me.
.
And I feel like maybe I need a button or a sign or something that says, “I’m not rude, I’m just really introverted, I have social anxiety, and I have no idea how to talk to people.” Because like… 2 different women tried talking to me and I just like… shut down. I tried to be polite but at the same time (I still thought radiation was starting at that point) my head was completely reeling with all the scared and anxious and lack of sleep.
.
These women joked and laughed and asked each other questions and I just sat there with my awkward pants on and tried not to freak out. One woman (probably in her… late 50s to maybe mid 60s … I suck at guessing people’s ages) looked at my head and said, “Oh you’re hair is coming back in really nicely!” and I just blurted out, “Oh, I just cut it way down a few weeks ago… I don’t really start anything until Thursday so…” but it just felt so … I don’t know.
.
All of the women I saw today were at LEAST 15-20 years (or more) older than I am. And I just felt like a fucking baby sitting there.. gutted like many of them probably are… scared and uninformed and completely useless socially besides.
.
And one woman was asking about my course of treatment and was talking about how she’d been doing this for 2 years. TWO. YEAAAAARS.
.
I didn’t even know what to say I just… nodded politely and continued heading on my way. I just… :deep breath:.
.
But seriously, I need a sign to put around my neck that just says… “give me time, I’ll warm up.. but right now I’m scared and anxious and overwhelmed and trying to talk to even 1 person I don’t know is way over my threshold so please respect my silence.”
.
I will be putting together my chemo bag tomorrow with this kind of interaction in mind because from what I understand I will basically be in a room with several other strangers for like… 5-6 hours on Thursday and while I may be able to untie my tongue by.. hour 4 or so… the start of all of this so not goign to be a social hour for me, there is no way I can handle that.
.
I bought headphones, and I’ll bring my laptop and my e-reader and the plug for my phone charger so I can listen to music on it. Hopefully people will just… understand and not push me on trying to socialize the first couple of sessions. I am so at my limit right now. Honestly, I almost freaked out just dealing with the radiation techs today and I barely had much interaction at all outside of a few instructions and tips and then being told to keep holding still.
.
But seriously, right now my big nightmare isn’t even the chemo infusion itself, it’s sitting in a room with a bunch of people I don’t know and being like… ushered into the Cancer-Chemo Community before I can process it all my own way.
.
Lots to process right now. blegh.
Mental Math
I just looked at my treatment calendar (the radiation one, since I don’t have my chemo calendar until Thursday) and realized that I should finish the major chunk of treatment right before my birthday on August 4th.
.
I’ll still have 3 1x a week chemo infusions after that but the big ugly scary stuff will be done just before I turn 31. Last year for my birthday I wanted to celebrate big because I’d made it to 30 and everything was so great and my friends honestly… sort of let me down.
.
But this year… I think this year I’m going to put together a Birthday Event. I’ll sit down with Kris mid-July and maybe try to come up with something really amazing to do. Because after all of this shit… I deserve it.
.
That is of course on the assumption that I only need one “round” of all of this and I don’t suddenly find out it’s suppose to be 2 rounds or 3 or whatever. But for now, I like this plan. Yes. It’s good.
.
I’ll still have 3 1x a week chemo infusions after that but the big ugly scary stuff will be done just before I turn 31. Last year for my birthday I wanted to celebrate big because I’d made it to 30 and everything was so great and my friends honestly… sort of let me down.
.
But this year… I think this year I’m going to put together a Birthday Event. I’ll sit down with Kris mid-July and maybe try to come up with something really amazing to do. Because after all of this shit… I deserve it.
.
That is of course on the assumption that I only need one “round” of all of this and I don’t suddenly find out it’s suppose to be 2 rounds or 3 or whatever. But for now, I like this plan. Yes. It’s good.
Monday, June 18, 2012
Unknowns
I start radiation tomorrow.
.
I start Chemo on Thursday.
.
I am trying very hard not to be terrified but my anxiety disorder is NOT helping right now.
.
I used to have debilitating social anxiety. To the point that there have been extended periods in my life where school and/or work were actually impossible for me. In fact when I left college it was because of my anxiety disorder. I’ve not been back and that was almost 10 years ago now.
.
In the last couple of years I’ve really worked hard to get a handle on my anxiety and to be able to manage it mostly on my own: no meds, minimal therapy. Not that there’s anything wrong with meds or therapy, I just personally prefer not to use them if I can avoid it. (I suck at remembering to take pills for one thing). So the fact that I’ve been in my position at work long enough to be offered a promotion, to have been given new accounts, to have been trusted with high-profile clients and situations is really amazing. To say nothing of the social life that I was enjoying thoroughly before I got sick.
.
But there is so much unknown for me with Cancer, and treatment, and all of this. New people, new doctors, new places, new situations, new experiences. And I am completely overwhelmed. I’ve been hiding out at home a lot trying to minimize my exposure, which is one of the tricks I used early on my anxiety recovery. But tomorrow I start radiation. Thursday I start Chemo. And so not only am I dealing with all the heavy emotional and physical crap that goes along with all of that anyway, I am also trying desperately to reign in my anxiety over situations I’m unfamiliar with. With the realization that I will likely not be the only Cancer patient having Chemo on Thursday. New experiences, new people, new places. And a lower-than-average tolerance for all of the above as it is.
.
I bought headphones today when I got groceries, just some cheap ones, so I can take my laptop/phone and listen to music or watch a movie if I start to get overwhelmed… but I am so incredibly anxious about all of this. And it’s been a long time since I’ve lived with that in the pit of my stomach this way. Now I remember why I worked so hard to move past it. But of course, this is not your average situation and some of my old tricks aren’t as effective as they once were.
.
I know I’ll be fine, and in a week, maybe 2, it’ll all be old hat to me. But I am still scared and anxious and wanting to run away.
.
Of course it doesn’t help that I probably will not be back at work before my 12 week FMLA is up and I will be stuck looking for another job which is a major source of anxiety for me at any time. Couple the regular anxiety about new places, people, experiences with having to learn new skills under scrutiny. :blegh:
.
Trying not to worry about that too much until I have to because.. one day at a time and all that embroidered-on-a-pillow shit.
.
Anyway… I guess this is just a post acknowledging my own fears because I feel like I haven’t really be honest with myself about some of my really underlying issues with all of this and it’s not helping me deal or get over them to just stuff them like they don’t exist.
.
:sigh: Aren’t you glad you wasted your time reading all this? Sorry ‘bout that. Carry on.
.
I start Chemo on Thursday.
.
I am trying very hard not to be terrified but my anxiety disorder is NOT helping right now.
.
I used to have debilitating social anxiety. To the point that there have been extended periods in my life where school and/or work were actually impossible for me. In fact when I left college it was because of my anxiety disorder. I’ve not been back and that was almost 10 years ago now.
.
In the last couple of years I’ve really worked hard to get a handle on my anxiety and to be able to manage it mostly on my own: no meds, minimal therapy. Not that there’s anything wrong with meds or therapy, I just personally prefer not to use them if I can avoid it. (I suck at remembering to take pills for one thing). So the fact that I’ve been in my position at work long enough to be offered a promotion, to have been given new accounts, to have been trusted with high-profile clients and situations is really amazing. To say nothing of the social life that I was enjoying thoroughly before I got sick.
.
But there is so much unknown for me with Cancer, and treatment, and all of this. New people, new doctors, new places, new situations, new experiences. And I am completely overwhelmed. I’ve been hiding out at home a lot trying to minimize my exposure, which is one of the tricks I used early on my anxiety recovery. But tomorrow I start radiation. Thursday I start Chemo. And so not only am I dealing with all the heavy emotional and physical crap that goes along with all of that anyway, I am also trying desperately to reign in my anxiety over situations I’m unfamiliar with. With the realization that I will likely not be the only Cancer patient having Chemo on Thursday. New experiences, new people, new places. And a lower-than-average tolerance for all of the above as it is.
.
I bought headphones today when I got groceries, just some cheap ones, so I can take my laptop/phone and listen to music or watch a movie if I start to get overwhelmed… but I am so incredibly anxious about all of this. And it’s been a long time since I’ve lived with that in the pit of my stomach this way. Now I remember why I worked so hard to move past it. But of course, this is not your average situation and some of my old tricks aren’t as effective as they once were.
.
I know I’ll be fine, and in a week, maybe 2, it’ll all be old hat to me. But I am still scared and anxious and wanting to run away.
.
Of course it doesn’t help that I probably will not be back at work before my 12 week FMLA is up and I will be stuck looking for another job which is a major source of anxiety for me at any time. Couple the regular anxiety about new places, people, experiences with having to learn new skills under scrutiny. :blegh:
.
Trying not to worry about that too much until I have to because.. one day at a time and all that embroidered-on-a-pillow shit.
.
Anyway… I guess this is just a post acknowledging my own fears because I feel like I haven’t really be honest with myself about some of my really underlying issues with all of this and it’s not helping me deal or get over them to just stuff them like they don’t exist.
.
:sigh: Aren’t you glad you wasted your time reading all this? Sorry ‘bout that. Carry on.
Some Thoughts
So, I have completely lost track of the date. And thankfully Kris actually opened my car statement this week because I had completely and totally lost track of what day it is and I didn’t make the payment on the 15th (not that I actually have it right now anyway but still). Anyway, instead of making this months payment, she’s going to just pay it off completely (I have it paid it down to under $5g but instead of trying to make a payment each month for the next year (since it’s quite possible I’ll be unemployed by the time I’m done with treatment… during which I don’t get a paycheck anyway)… she said I shouldn’t have to expend energy stressing about how to make that payment every month.
.
She said she wants me to be able to focus completely on getting better. That I need one less thing to worry about. I was floored and so grateful. I meant to call them anyway and ask if I could get a 10 day extension this month anyway, but now I just call and ask about the payoff amount and then when I’m back on my feet… I pay her instead of them.
.
Sometimes I get completely overwhelmed by the things she does and offers. Not surprised necessarily- because this is totally something fairly… typical for her. She’s got easily the most generous spirit of anyone I’ve ever met… and thinks of me and treats me as though I were her daughter. I’m glad to have this off my plate for now. But I look forward to being able to pay her back over the next year. Hopefully if my job DOES go away before I get back.. I’ll find something comparable (or better) and be able to repay her quickly.
.
And in related news: I start treatment this week. :exhale:
.
I don’t really know how to feel. I’ve talked before about how different it is to be right up against the start of it all vs how theoretical it all was just a week ago. The port, the pain, the appointments in my Cancer Chart site… it’s really happening now. In a way I’m glad to get started. “Sooner started, sooner done.” But mostly, I am scared.
.
My friend Dani (Cancer-Sister extraordinaire) posted on FB today about starting her treatment tomorrow. What she said rang so true to me today as I count down the days to my own treatment starting: “I know I’m going to finish the battle on top but that doesn’t take away the fear. The anxiety and all the sad and bad feelings that come with it. I appreciate the support but I’d like for you all to acknowledge that this is so much more. I know i am going to be fine, i know that. right now i think it’s best for me to realize that i am not ok and be ok with that because if i don’t i think i will explode.”
.
I think there are some times when ind words, while well intentioned, tend to gloss over the fact that something really HUGE is happening here, in my life, in my heart, in my own little battleground body. And as much as I have appreciated friends and family constantly touting “You’ll be ok, everything is going to be ok” sometimes what I need to hear is… “shit this is scary.” Honestly. I know that seems strange but it’s the truth.
.
Some days are like that.
.
Right now all I can do is take it easy. One day at a time. And then deal with treatment when it’s my turn. Learn to navigate that the way I’ve learned to navigate everything else that’s come with this diagnosis.
.
and in the meantime… I rest. I try to keep my mind clear and my worries minimal. And thankfully I have the support to do that.
.
Tomorrow I call the car company and get the payoff amount. I call the radiation office to get my radiation schedule. And I try to prepare myself for Tuesday, for Thursday, for the next 5 and a half weeks of my life.
.
She said she wants me to be able to focus completely on getting better. That I need one less thing to worry about. I was floored and so grateful. I meant to call them anyway and ask if I could get a 10 day extension this month anyway, but now I just call and ask about the payoff amount and then when I’m back on my feet… I pay her instead of them.
.
Sometimes I get completely overwhelmed by the things she does and offers. Not surprised necessarily- because this is totally something fairly… typical for her. She’s got easily the most generous spirit of anyone I’ve ever met… and thinks of me and treats me as though I were her daughter. I’m glad to have this off my plate for now. But I look forward to being able to pay her back over the next year. Hopefully if my job DOES go away before I get back.. I’ll find something comparable (or better) and be able to repay her quickly.
.
And in related news: I start treatment this week. :exhale:
.
I don’t really know how to feel. I’ve talked before about how different it is to be right up against the start of it all vs how theoretical it all was just a week ago. The port, the pain, the appointments in my Cancer Chart site… it’s really happening now. In a way I’m glad to get started. “Sooner started, sooner done.” But mostly, I am scared.
.
My friend Dani (Cancer-Sister extraordinaire) posted on FB today about starting her treatment tomorrow. What she said rang so true to me today as I count down the days to my own treatment starting: “I know I’m going to finish the battle on top but that doesn’t take away the fear. The anxiety and all the sad and bad feelings that come with it. I appreciate the support but I’d like for you all to acknowledge that this is so much more. I know i am going to be fine, i know that. right now i think it’s best for me to realize that i am not ok and be ok with that because if i don’t i think i will explode.”
.
I think there are some times when ind words, while well intentioned, tend to gloss over the fact that something really HUGE is happening here, in my life, in my heart, in my own little battleground body. And as much as I have appreciated friends and family constantly touting “You’ll be ok, everything is going to be ok” sometimes what I need to hear is… “shit this is scary.” Honestly. I know that seems strange but it’s the truth.
.
Some days are like that.
.
Right now all I can do is take it easy. One day at a time. And then deal with treatment when it’s my turn. Learn to navigate that the way I’ve learned to navigate everything else that’s come with this diagnosis.
.
and in the meantime… I rest. I try to keep my mind clear and my worries minimal. And thankfully I have the support to do that.
.
Tomorrow I call the car company and get the payoff amount. I call the radiation office to get my radiation schedule. And I try to prepare myself for Tuesday, for Thursday, for the next 5 and a half weeks of my life.
Saturday, June 16, 2012
Pain
Port pain is finally on the mend. Took off the plastic tape/bandage (giant plastic sticky seal they put over the whole area) and that I think actually helped a lot. Judging by how red my skin was once it was off… and the better range of motion I have… I think the tautness (and the fact that my skin HATES that stuff) may have been contributing to a lot of the discomfort.
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Ra’s advice about alternating the norco (thank GOD I had some leftover 5-500) with the ibuprofen seems to be helping too… and at her demand, I’ve been taking it a lot easier than I was originally inclined to. Which has meant getting a lot of rest and staying fairly immobile as much as I can stand. And staying home, quiet too. Thank god for best friends who are in med school.
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Other than that… Radiation and Chemo start next week. Nervous. More nervous than I care to admit really. Throughout all of this treatment itself has felt very… theoretical to me. The fact that I have a port for chemo, and markers for radiation, and stickers for lining up the radiation and starting appointments is making it all so much more real. I’ll be honest- I’m having a hard time accepting it all- dealing with it.
.
I keep joking with Kris whenever we go up to UT… “It’s not too late to head for Aruba.” I know this was the right decision, and I know my treatment choice is the best for me for my Cancer… but there is still this piece of the OLD me- the broken one, the one who couldn’t face anything- deep inside that keeps screaming, “RUN.”
.
I guess I should probably make another therapy appointment for next week or the week after. But I don’t know what to say. And I don’t know what I’d need her to say. Half the time I think I want people to tell me everything will be fine, and not to worry, and it’s going to be ok. And half the time I think I’ll scream if someone doesn’t just come out and say, “this sucks and you shouldn’t have to do this and it’s not fair.” And then… on top of all of it I don’t want people to say anything at all. And everything everyone says is wrong and stupid and none of it makes me feel any better… except that people reaching out to me in love does make me feel better- even if their specific words don’t.
.
I was supposed to remove that bandage and shower today but I got too scared. I took the bandage off but never made it to the shower. I never thought I’d be the kind of person who was afraid of physical pain. All those years of cutting and now I’m afraid of pain. Ironic.
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:sigh: Sometimes when I sit and think about everything I feel so old. And sometimes it makes me feel so young, immature, unprepared. I want to put so much of what I talk about here on FB but I don’t. Because young, old, whatever— I still feel like I need to protect the people I love from the full force of what I’m feeling about all of this. Isn’t it enough that I’m scared and sad and anxious without everyone else having to deal with that too— when they’re dealing with their own scared and sad and anxious about it all already?
.
My therapist would slap my wrist for that (metaphorically of course). She’d say I should trust people to set their own boundaries, and that I should go with my instinct to reach out and let people in so they can help me, soothe me, support me.
.
She’d say that I need to stop worrying so much about other people and start focusing on what I need from them in order to make it through all of this. She’d tell me it’s time to be a little bit selfish.
.
I’ve never been very good at that though. Putting myself first. But maybe she’s right to an extent. Maybe I need to be asking more and setting my OWN boundaries. People can’t give me what I need if I don’t tell them right?
.
.
.
.
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I guess the real problem is… it’s easier to try and protect everyone else than to try and figure out what it is that I really need.
.
Ra’s advice about alternating the norco (thank GOD I had some leftover 5-500) with the ibuprofen seems to be helping too… and at her demand, I’ve been taking it a lot easier than I was originally inclined to. Which has meant getting a lot of rest and staying fairly immobile as much as I can stand. And staying home, quiet too. Thank god for best friends who are in med school.
.
Other than that… Radiation and Chemo start next week. Nervous. More nervous than I care to admit really. Throughout all of this treatment itself has felt very… theoretical to me. The fact that I have a port for chemo, and markers for radiation, and stickers for lining up the radiation and starting appointments is making it all so much more real. I’ll be honest- I’m having a hard time accepting it all- dealing with it.
.
I keep joking with Kris whenever we go up to UT… “It’s not too late to head for Aruba.” I know this was the right decision, and I know my treatment choice is the best for me for my Cancer… but there is still this piece of the OLD me- the broken one, the one who couldn’t face anything- deep inside that keeps screaming, “RUN.”
.
I guess I should probably make another therapy appointment for next week or the week after. But I don’t know what to say. And I don’t know what I’d need her to say. Half the time I think I want people to tell me everything will be fine, and not to worry, and it’s going to be ok. And half the time I think I’ll scream if someone doesn’t just come out and say, “this sucks and you shouldn’t have to do this and it’s not fair.” And then… on top of all of it I don’t want people to say anything at all. And everything everyone says is wrong and stupid and none of it makes me feel any better… except that people reaching out to me in love does make me feel better- even if their specific words don’t.
.
I was supposed to remove that bandage and shower today but I got too scared. I took the bandage off but never made it to the shower. I never thought I’d be the kind of person who was afraid of physical pain. All those years of cutting and now I’m afraid of pain. Ironic.
.
:sigh: Sometimes when I sit and think about everything I feel so old. And sometimes it makes me feel so young, immature, unprepared. I want to put so much of what I talk about here on FB but I don’t. Because young, old, whatever— I still feel like I need to protect the people I love from the full force of what I’m feeling about all of this. Isn’t it enough that I’m scared and sad and anxious without everyone else having to deal with that too— when they’re dealing with their own scared and sad and anxious about it all already?
.
My therapist would slap my wrist for that (metaphorically of course). She’d say I should trust people to set their own boundaries, and that I should go with my instinct to reach out and let people in so they can help me, soothe me, support me.
.
She’d say that I need to stop worrying so much about other people and start focusing on what I need from them in order to make it through all of this. She’d tell me it’s time to be a little bit selfish.
.
I’ve never been very good at that though. Putting myself first. But maybe she’s right to an extent. Maybe I need to be asking more and setting my OWN boundaries. People can’t give me what I need if I don’t tell them right?
.
.
.
.
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I guess the real problem is… it’s easier to try and protect everyone else than to try and figure out what it is that I really need.
Thursday, June 14, 2012
2:50am
And basically all I’ve done since I woke up from a nap around 5pm is cry, take 4 Norco (4 hours between each dose of 2 pills), and try to distract myself.
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But at no point has my pain gone below a 7 on the pain scale. Mostly… depending on how I move… 8-9.
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I’m really really unhappy. I know it’s logical for it to hurt at the port site, but is it normal to hurt this much?
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I have to call the Oncologist in the morning and see if there’s something else I can take. I can’t handle this. When I’m admitted to the hospital, my pain-threshold number on file is 3 or 4. This is fucking ridiculous.
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I’m not used to being in this much pain anymore (although I keep trying to remind myself that pre-diagnosis I used to WORK at a 6+ on an almost daily basis). It just fucking hurts.
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I keep saying over and over again… it’s worth it, it’s worth it, it’s worth it. If it means they don’t have to stick me 5billion times every time I have Chemo… or put an IV line at my knuckle, or blow out 5 veins trying to get it in. But jesus h christ I am seriously wussing out over this pain. I can’t deal with this shit. Seriously. How did they NOT give me something more significant for when I got home with this shit?
Wednesday, June 13, 2012
7 hours
insomnia + headache + exhuastion +hot flash + anxiety + surgery in 7 hours = ugly crying
.
right this second… I am not ok.
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I have never in my life wanted to run away from something so much as I want to run away from all of this.
Tuesday, June 12, 2012
Self-Care Self-Portrait
Self-Care Self-Portrait:
Day 1: June 11th, 2012
I needed to do something radical tonight. I made a point to read a post about chemo by one of the Cancer Survivor blogs I follow which turned out to be a mistake because it set off quite the emotional spiral.
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I’ve wanted for awhile to do this sort of… face-spam as self-care. So many of the fatabulous body-positive bloggers I follow have done so and I’ve always admired their confidence.
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I decided last week that I really want to do an actual self-portrait project throughout my treatment. It’ll take a little work I have to figure out and set up a space in my room for it (including a mirror). And figure out the mechanics (my camera’s timer and focus don’t get along well with me).
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But for tonight, I still needed something radical (for me) to soothe me.
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So, I focused on my tattoo, my face, and used my phone camera.. importing the shots I liked to instagram and adding filters from there.
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The middle one I actually took last week while trying to explain my project vision to another photographer friend. They’re not spectacular. Photographically speaking they’re not even that good. But they are… radical. For me.
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Because I have always shyed away from portraits of myself. The only photo of myself I ever really resonated with was a self-portrait I took in a mirrored mosaic at the fair one year. Most of my face is hidden behind my camera. But in these shots, simple as they are… I feel strong. Confident. Beautiful. Feminine even. Not a descriptor I use that much about myself.
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And there is fear in them too. Uncertainty. Anxiety about the coming weeks. There aren’t many smiles. But there is ME. With round cheeks, multiple chins… and that frakking tattoo. “Infinite Strength.” I didn’t realize when I got it back in February… how much and how desperately I would need that little reminder.
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So this is the start. For tonight: this was crucial self-care. My face, my tattoo, my short-cropped hair. Seeing myself over and over, setting up each shot, editing, posting, watching myself. And realizing how much and how infinitely I’ve come to love the person I see in the mirror.
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This is me. Learning a new way to take care of me.
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Radical Self Love.
.
Envisioned.
.
Created.
.
Seen.
Monday, June 11, 2012
1 Day at a Time
I am so nervous about next week. Tuesday: follow up with Dr. Kehoe… which I’m NOT nervous about of course because I always feel better after talking to her.
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But Wednesday my port goes in and I am fucking terrified about that. Should be about a 4 hour thing from checkin to check out from what I understand but ugh… I am nervous because incisions and a port to have in me constantly for the next what… 2 months?
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Libbeth wants to fly me to Eugene for the few days before I start treatment as a treat. Part of me really WANTS to go (if I’m even allowed to fly) but I don’t know what the rules will be once that port goes in. We’ll see.
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She might be able to come down and be here for the first few days of treatment though which I think would probably be a really good thing.
.
:sigh:
I need to go back to doing the whole.. one day at a time thing: it’s just that sometimes… 2 or 3 or 4 of them gang up on me all at once.
Saturday, June 9, 2012
Sometimes
Honestly, sometimes I feel so stupid complaining. I mean, the truth is… it could be so so so much worse.
.
But we’ve spent all this time, all these steps functioning on this… “best case scenario” philosophy. And while I recognize that even when things haven’t gone according to the best case we planned for, they could have gone so much worse… we keep missing the best-case ending.
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And I am scared. And tired. And frustrated. And knowing that it could be so much worse, doesn’t make it feel any better.
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And even though today was a better day, at night, when it gets quiet, and I can’t distract myself anymore. I am scared. Of everything that’s coming up. The port, chemo, radiation. I’m even scared to lose the peachfuzz on my head.
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I’m not ready for all this.
Sleep + Stuff
So tonight we’re trying the new med combo for sleep.
1 Norco
1 Ativan
1 Paxil
.
I remain skeptical but jesus if it helps me actually sleep I will be so so glad.
.
Had a much better day really.. physically. Incision is almost completely healed, and for part of the day I felt practically peppy.
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Exhausted now though. Part of the problem is my head (although thank GOD my nausea has been almost non-existant today) is POUNDING. I’m honestly not sure how much is glasses (my new ones should be in next week) or the fact that I am STILL really really clenching my teeth/jaw most of the time.
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I broke down and cried at one point and then all of sudden my headache cleared up and my jaw relaxed, but I can’t just sit here and cry all the time that’s impractical,at best.
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Have you ever TRIED to “relax” your jaw… but constantly. I’m usually so oblivious to my mouth/jaw that trying to figure out the best way to… hold it, is fucking ridiculous.
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I have to figure something out though because the tension and the headache it’s producing is horrifying.
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I’m grateful that most of the day was better though. Glad for small favors I suppose.
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Trying not to think too much about next week. Oncology Apt. Tuesday morning, radiation “simulation” the same afternoon, and then Wednesday my port goes in. Nervous about that. Hence… trying not to think about it.
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But today at least, today was a little better.
Friday, June 8, 2012
Honest
If I let myself be really honest… I try really hard not to lean too heavily on anyone. Partly because I know this could be so much worse than it is… And partly because I am genuinely afraid about all of this. Cancer, symptoms, treatment.
Sometimes it feels completely overwhelming.
Right now it feels completely overwhelming.
I’m tired and nauseated and in pain and having one of those moments when what’s coming up is really terrifying. Annnnnd there’s the tears.
Better to cry than stuff it down says supertherapist so maybe.. maybe ill be able to just cry myself to sleep. That’d be better than lying awake all night. Right?
Thursday, June 7, 2012
Admissions
Therapy today. thank God.
.
I don’t call her “SuperTherapist” for nothing. I’m so grateful she squeezed me in today… and as always the question as she takes my card, “are you ok today or am I taking your grocery money.” A therapist who still treats… even on the off chance you can’t afford to pay her that week.
.
Had a good talk. Need to work on working through my emotions… (what else is new). A lot of the challenge I have with the Cancer stuff is that i have a really hard time accepting that I don’t have any control. Not really. For years, even at my worst, I always knew that when you boiled it down— I could get control over my emotional issues, over my anxiety, my depression. I knew I’d need help to do it, but ultimately that it was something I would actually control.
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But this? I can’t control this. My body is going to change, I’m already dealing with nausea, dizziness… sleep issues. I can’t control it. They can mitigate it: with medication ultimately… a lot of it at least.
.
And the thing I hadn’t said out loud before…
.
Ever since this all started we’ve functioned on this… “best case scenario” basis.
-They’ll figure out what’s wrong and fix it.
-oh.. well, it’s Cancer.
-We’ll hook you up with an amazing Oncologist
-oh… well, there’s a giant tumor btw.
-Surgery. We’ll do a hysterectomy and then it’ll be all over, in fact, we’ll do it robotically, easy peasy.
-except the tumor’s too big so here’s your incision.
-Let it heal, it’ll be fine
-except there’s an abcess and an infection, enjoy your wound-vac.
- So, hysterectomy and it’s over right?
-except one of the lymph nodes came back Cancer positive… so treatment is
necessary
.
And I know, the prognosis is good, excellent even. And 95% of the time I feel really confident (if a bit nervous and scared) about it all. But 5% of me looks back and says… that whole “best case scenario” thing hasn’t really panned out so far… And I don’t want to die.
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And I know that seems like a leap when you’re not in my head. But it’s there.. small, quiet, minimal— but there.
.
I spent so much time putting off my life. Not really doing anything… honestly— suicidal for most of it. And now I really really want to live… and :boom: Cancer.
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It will be ok. It will. I believe that.
.
Except when it’s really really late, and I can’t sleep, and it’s dark and I’m tired and that little tiny 5% starts whispering… “but maybe.”
.
:sigh:
So that’s my honesty for today. Aren’t you glad you read all that?
.
:deep breath:
.
S’gonna be ok. I know it.
Wednesday, June 6, 2012
Supertherapist
I don’t have regular therapy sessions anymore although I may set up sessions every other week once treatment starts. I did maange to get a squeeze in with SuperTherapist on Thursday.
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Which is good, because I definitely need a chance to get down and dirty and honest about all my… Cancer Feels.
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The only problem is because I see her so rarely, I always spend my random sessions talking about the good things, because part of me wants my therapist to be proud of me.. heh, I can’t help it… it’s the people-pleaser in me.
.
But I need to really TALK to her. Because I may lose it if I don’t. I try, as much as possible to keep a positive, everything will be fine, no big deal front up as much as I can. Even the complaints that do get to the blog, or to my friends and family are pretty … surface really. My nausea, my tiredness. But the truth is I am terrified of this, all of it. Hell, I’m still terrified of my incision and it’s almost fully healed now.
.
I live in a constant state of fear and anxiety and as much as I try to hide it, I honestly, truly, do not know how to deal with Having Cancer. I just fucking don’t. I’m not dealing with it. The closest I’ve come to dealing with it directly was to get my head almost shaved. And even that I turned into a party— so I wouldn’t have to sit and cry while it was happening.
.
As much of a “brave” face as I put on day to day, I don’t know how to handle this I just don’t.
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Which is good, because I definitely need a chance to get down and dirty and honest about all my… Cancer Feels.
.
The only problem is because I see her so rarely, I always spend my random sessions talking about the good things, because part of me wants my therapist to be proud of me.. heh, I can’t help it… it’s the people-pleaser in me.
.
But I need to really TALK to her. Because I may lose it if I don’t. I try, as much as possible to keep a positive, everything will be fine, no big deal front up as much as I can. Even the complaints that do get to the blog, or to my friends and family are pretty … surface really. My nausea, my tiredness. But the truth is I am terrified of this, all of it. Hell, I’m still terrified of my incision and it’s almost fully healed now.
.
I live in a constant state of fear and anxiety and as much as I try to hide it, I honestly, truly, do not know how to deal with Having Cancer. I just fucking don’t. I’m not dealing with it. The closest I’ve come to dealing with it directly was to get my head almost shaved. And even that I turned into a party— so I wouldn’t have to sit and cry while it was happening.
.
As much of a “brave” face as I put on day to day, I don’t know how to handle this I just don’t.
Monday, June 4, 2012
Today
Today was really great. So amazing to be surrounded by so much love and support.
.
Unfortunately, I did not sleep well last night and tonight looks to be following the same pattern.
.
Just spent about 30 minutes sobbing. Ugly, can’t breathe, please kill me, sobbing. I am so fucking tired.
.
And of course, I’m nauseated again because I’m constipated. (Fuck the read-more… if you don’t want this kind of honesty, unfollow).
.
I am actually desperate and nauseated enough tonight that I would actually take the Colace… except that I left it at mom’s. :headdesk:
.
Really really really tempted to take a 2nd ambien. I just… I can’t handle lying awake for a 2nd (well, really 3rd.. maybe 4th) night in a row. I can’t. I’m exhausted.
.
I hate this.
.
Unfortunately, I did not sleep well last night and tonight looks to be following the same pattern.
.
Just spent about 30 minutes sobbing. Ugly, can’t breathe, please kill me, sobbing. I am so fucking tired.
.
And of course, I’m nauseated again because I’m constipated. (Fuck the read-more… if you don’t want this kind of honesty, unfollow).
.
I am actually desperate and nauseated enough tonight that I would actually take the Colace… except that I left it at mom’s. :headdesk:
.
Really really really tempted to take a 2nd ambien. I just… I can’t handle lying awake for a 2nd (well, really 3rd.. maybe 4th) night in a row. I can’t. I’m exhausted.
.
I hate this.
Sunday, June 3, 2012
Friday, June 1, 2012
Oncologist Day
Ok so, today was Oncologist Day. The good news: Wound-Vac is OUT. She was very happy with the progress of my incision and although she was a little on the fence about maybe leaving it in for another week, ultimately she decided to take it out. I still have a hole in my belly which is SUPER disconcerting, but now it’s packed with gauze and covered with 4x4 gauze packs and tape. I see her again week after
.
next to check its progress.
.
Now… as for treatment. :deep breath:
I have to stop and say that I LOVE my oncologist. And all of her staff. They are honest, forthright, empathetic, and don’t treat me like an idiot. She recognizes that I do have SOME knowledge about what’s happening and speaks to me with respect and dignity that I’ve had a hard time finding at other physicians.
.
We talked for a long time, her, her nurse, my mom and grandmother and I. We talked about the trial, and treatment options outside the trial. Ultimately the decision was really mine. I would love (really) to be part of the study. I would. But there is no guarantee I would end up in the group that gets both Chemo AND Radiation. And to be honest, after talking to all the Doctors and my family and doing my own research, I just feel like if I don’t do BOTH now, I may regret it later. At least this way, if the Cancer DOES come back… I can say I really did try everything right off the bat.
.
So here’s the plan:
I will have an appointment at the radiation office next week to do all the pre-screenings (CT etc). I’ll get a call to schedule a day surgery to put in a port at my clavicle for the chemo. It makes it easier than having to find a vein every time. Once the Port is in, we’ll start the whole treatment process on the next Monday (probably week after next or the week after).
Then the schedule goes as follows:
.
Day 1: Chemo and Radiation (5-6 hour day up at the Cancer center)
Day 2-5: Radiation (about an hour a day).
.
Lather, rinse, repeat 5 days a week for 5 weeks. Then, 1 round of chemo a week for 3 weeks.
.
Presumably at that point, I get the all clear.
.
Confirmed side effects:
-Exhaustion
-Likely Nausea (I’ll get meds to mitigate that)
-Likely Diarrhea. The nurse said one of the “benefits” of doing both treatments simultaneously… the Radiation causes diarrhea, the chemo causes constipation… she said a lot of patients luck out and the two cancel each other out so you don’t have to worry about it at all
-Hair Loss. It’s going to happen. Now, Sunday I’m buzzing my hair already so that shouldn’t be as traumatic as it could be. But as a bonus, she did say ALL of my hair would come out… leg hair, pubes, everything. I’m going to call this a win for personal grooming although most people consider it a lose on side effects.
.
All in all it could be so so much worse. I’m not thrilled about the port, but I am if it makes it easier to do the treatment. In all honestly, I just… I want it to be over. The sooner we can start, the sooner I can be done.
.
In the meantime, I still need help… if you haven’t and you CAN (and I don’t expect any of you to be able to or to feel obligated to) please consider donating to my Cancer Fund. It may be a few weeks before my insurance comes through and there are bills to pay in the meantime. So far I’m almost covered for next month thanks to people’s generosity… but every little bit helps.
.
Once I have a chance, I’ll do another photo post of my progress Belly-wise. I can’t even describe how much that helped me… to say nothing of everyone’s positivity and support thereafter.
.
Sorry to put so much of the “Cancer Crap” here… but I know a lot of you want ot know but aren’t following my actual Cancer Blog so I wanted to be sure the folks that wanted to know saw the latest.
.
Love to you all, and remember to LOVE YOURSELVES.
.
next to check its progress.
.
Now… as for treatment. :deep breath:
I have to stop and say that I LOVE my oncologist. And all of her staff. They are honest, forthright, empathetic, and don’t treat me like an idiot. She recognizes that I do have SOME knowledge about what’s happening and speaks to me with respect and dignity that I’ve had a hard time finding at other physicians.
.
We talked for a long time, her, her nurse, my mom and grandmother and I. We talked about the trial, and treatment options outside the trial. Ultimately the decision was really mine. I would love (really) to be part of the study. I would. But there is no guarantee I would end up in the group that gets both Chemo AND Radiation. And to be honest, after talking to all the Doctors and my family and doing my own research, I just feel like if I don’t do BOTH now, I may regret it later. At least this way, if the Cancer DOES come back… I can say I really did try everything right off the bat.
.
So here’s the plan:
I will have an appointment at the radiation office next week to do all the pre-screenings (CT etc). I’ll get a call to schedule a day surgery to put in a port at my clavicle for the chemo. It makes it easier than having to find a vein every time. Once the Port is in, we’ll start the whole treatment process on the next Monday (probably week after next or the week after).
Then the schedule goes as follows:
.
Day 1: Chemo and Radiation (5-6 hour day up at the Cancer center)
Day 2-5: Radiation (about an hour a day).
.
Lather, rinse, repeat 5 days a week for 5 weeks. Then, 1 round of chemo a week for 3 weeks.
.
Presumably at that point, I get the all clear.
.
Confirmed side effects:
-Exhaustion
-Likely Nausea (I’ll get meds to mitigate that)
-Likely Diarrhea. The nurse said one of the “benefits” of doing both treatments simultaneously… the Radiation causes diarrhea, the chemo causes constipation… she said a lot of patients luck out and the two cancel each other out so you don’t have to worry about it at all
-Hair Loss. It’s going to happen. Now, Sunday I’m buzzing my hair already so that shouldn’t be as traumatic as it could be. But as a bonus, she did say ALL of my hair would come out… leg hair, pubes, everything. I’m going to call this a win for personal grooming although most people consider it a lose on side effects.
.
All in all it could be so so much worse. I’m not thrilled about the port, but I am if it makes it easier to do the treatment. In all honestly, I just… I want it to be over. The sooner we can start, the sooner I can be done.
.
In the meantime, I still need help… if you haven’t and you CAN (and I don’t expect any of you to be able to or to feel obligated to) please consider donating to my Cancer Fund. It may be a few weeks before my insurance comes through and there are bills to pay in the meantime. So far I’m almost covered for next month thanks to people’s generosity… but every little bit helps.
.
Once I have a chance, I’ll do another photo post of my progress Belly-wise. I can’t even describe how much that helped me… to say nothing of everyone’s positivity and support thereafter.
.
Sorry to put so much of the “Cancer Crap” here… but I know a lot of you want ot know but aren’t following my actual Cancer Blog so I wanted to be sure the folks that wanted to know saw the latest.
.
Love to you all, and remember to LOVE YOURSELVES.
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