Well, tomorrow is chemo day. Cycle 3 of 4. The good news is that means this is finally almost over.
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We tried to go to the Arboretum today. There's a big Chihuly exhibit right now, and it's slated to end on November 8th- which means there really wouldn't be another time to go before Chemo is over. So of course first thing is that I forgot to put a memory card back in my camera. Cue to me trucking back to the gift shop to buy a $20 2g memory card. :headdesk:
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Met back up with Kris, and we made our way through the gardens. Unfortunately before we got too far, my feet went numb, nausea rolled through and I lost the little bit of energy I had. Cue emotional breakdown.
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One of the most frustrating things about all of this has been accepting my physical limitations. I've never been the most fit person on the planet. But I've always been able to DO the things I want to do. A few years ago (heavier than I am now even), we went to the Arboretum and spent most of the day. I even went back the next day and went through even more of it. Contrasting that last visit with this one... I just- sort of broke a little.
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Poor Kris trying to decipher if I'm crying because of pain, or frustration, or exhaustion... We finally ended up at the kids area which had some cafe tables and chairs. It was near a restricted entrance, and Kris went up to the guardshack to ask if they'd let her bring the car in there to pick me up.
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So, we went home. I got some decent photos while we were there... but not what I wanted. Mostly what I got was a few photos, and a lot of frustration.
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Tomorrow is Chemo day. So we'll get up at an ungodly hour, drive to Simmons and I'll spend the first part of the morning waiting for various things:
Waiting to have my port accessed
Waiting to see my Oncologist
Waiting to get into a chemo room
Waiting to get the meds started
Waiting to get the chemo started
Waiting to get everything finished
Waiting for Kris to pick me up.
And then when we get home again... we wait some more. Wait for the side-effects to start. Wait to need another pain pill. Wait to need a nausea pill. Wait for my head to start hurting for the hair that hasn't yet come out to fall.
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But for tonight, I wait for the pain pills to kick in, and wait to fall asleep.
I pack up my purse, gather my things, pick out port-friendly clothes. And then I go to bed and start this cycle of waiting. And I try to forget how limited my life has become in all of this. Try to look forward, to getting my SELF back. Whatever that will mean post-Cancer.
Wednesday, October 24, 2012
Tuesday, October 23, 2012
Run Me Down
I feel like I'm hungry all the time.
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And that makes me really nervous. Because the last time I was hungry all the time... there were tons of tumors in my uterus. We didn't realize until after the fact that the constant hunger was part of that.
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I'm not actually hungry all the time. Objectively speaking, all that's happening is that my appetite is finally returning to normal after months of alteration, pre-surgery issues, post-surgery recover, side-effects, issues, problems... it's just finally... normalizing again.
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But I guess my hunger is just another on the list of things Cancer has made me afraid of. Germs, crowded spaces, pain, nausea.
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I suppose someday, that will all pass- or most of it anyway. I wonder sometimes, if there will come a time when Cancer no longer scares me. The idea that it can someday come back. But for now, I'm trying to focus on not letting the small fears run me over.
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Sometimes I think half of the Cancer fight- is just... not letting the little things run me down.
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And that makes me really nervous. Because the last time I was hungry all the time... there were tons of tumors in my uterus. We didn't realize until after the fact that the constant hunger was part of that.
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I'm not actually hungry all the time. Objectively speaking, all that's happening is that my appetite is finally returning to normal after months of alteration, pre-surgery issues, post-surgery recover, side-effects, issues, problems... it's just finally... normalizing again.
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But I guess my hunger is just another on the list of things Cancer has made me afraid of. Germs, crowded spaces, pain, nausea.
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I suppose someday, that will all pass- or most of it anyway. I wonder sometimes, if there will come a time when Cancer no longer scares me. The idea that it can someday come back. But for now, I'm trying to focus on not letting the small fears run me over.
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Sometimes I think half of the Cancer fight- is just... not letting the little things run me down.
This Too Shall Pass
I'm always a little jumpy in the pre-chemo week. Always a little more sensitive, emotionally. There's something about the very act of treatment that makes me more tender.
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It's harder to sleep at night this week. My mind races. My skin crawls. Added bonus this time around, my pain is still here, the numbness in my feet. This added... realness to treatment. Usually at this point in the cycle, things have resumed their sort of altered normalcy. The Cancer Normal. Where... it's not really regular, not really normal- but it's not so bizarre as life during the cycle.
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But this time, the cycle never really wound down the way it did before. I'm still in pain, I'm still exhausted. So I although I've fought through some of it to still get out and do and see and enjoy-- I haven't had the same kind of calm before the storm.
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I'm halfway through. That's what I keep telling myself, reminding myself. As bad as it is, as bad as it gets, I'm halfway through.
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This too shall pass.
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But at night, when it's late, when I'm waiting for pain pills to kick in, when I'm waiting for my skin to stop crawling, and my brain to stop rolling like a runaway train- sometimes it's hard to really believe that.
.
This too shall pass.
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It's harder to sleep at night this week. My mind races. My skin crawls. Added bonus this time around, my pain is still here, the numbness in my feet. This added... realness to treatment. Usually at this point in the cycle, things have resumed their sort of altered normalcy. The Cancer Normal. Where... it's not really regular, not really normal- but it's not so bizarre as life during the cycle.
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But this time, the cycle never really wound down the way it did before. I'm still in pain, I'm still exhausted. So I although I've fought through some of it to still get out and do and see and enjoy-- I haven't had the same kind of calm before the storm.
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I'm halfway through. That's what I keep telling myself, reminding myself. As bad as it is, as bad as it gets, I'm halfway through.
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This too shall pass.
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But at night, when it's late, when I'm waiting for pain pills to kick in, when I'm waiting for my skin to stop crawling, and my brain to stop rolling like a runaway train- sometimes it's hard to really believe that.
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This too shall pass.
Sunday, October 21, 2012
Looking Back
I went back to the beginning. Started really reading all these posts again. From pain, and discovery, through the process of learning about my Cancer, about how involved it was, how involved it has become.
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And it's so strange, to see those first couple of months of posts, when I was learning just how bad things were, when I still thought it would be so simple. When I thought it was just going to be... surgery and we're done.
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7 months later, here I am. Into round 2 of Chemo. After radiation, cisplatin, pain, surgery, infection, diagnosis.
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But there was a time, a month's span of time when I thought, really, that all it would take is surgery. And I'd be back, good as new.
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I'm still getting off more easily than many, than most really.
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But it's strange, to look back and see how little I knew. To see myself from the outside, dealing with it all.
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How far we've all come in 7 months. How far we'll all have come at the end of this year.
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The year that Cancer stole.
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And it's so strange, to see those first couple of months of posts, when I was learning just how bad things were, when I still thought it would be so simple. When I thought it was just going to be... surgery and we're done.
.
7 months later, here I am. Into round 2 of Chemo. After radiation, cisplatin, pain, surgery, infection, diagnosis.
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But there was a time, a month's span of time when I thought, really, that all it would take is surgery. And I'd be back, good as new.
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I'm still getting off more easily than many, than most really.
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But it's strange, to look back and see how little I knew. To see myself from the outside, dealing with it all.
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How far we've all come in 7 months. How far we'll all have come at the end of this year.
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The year that Cancer stole.
Saturday, October 20, 2012
Kitten Therapy
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Rory is the newest addition to our home menagerie. We said we were done taking in new animals, we've been rescuing for years and have more than our fair share of both dogs and cats. Kris had been taking in rescues long before I moved in even.
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When I first got here, I would never have imagined myself as a cat person at all. But over the years, they've grown on me. Two of our current brood are technically my babies, and they were among the last that we adopted. They're almost 4 years old now I think and in all honesty, they're a bit like the rest of the menagerie... more "ours" than mine.
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The other night when she got home from work, Kris came in and told me to go see the new stray babies on the porch. (We live in a high stray neighborhood... strays, and stray babies especially... are not that rare). I almost didn't go to look, but decided to give it a whirl.
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There were 3 babies. A pure white, a pure gray... and then... this guy.
The pure white one did let Kris hold it, although not super willingly. The gray one ran off on approach. But Rory. Well, Rory just stared up at me as I got closer. He let me pick him up without argument, and just... snuggled into my chest.
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I was hooked. He's super adorable first of all, but he has this amazing personality. He sleeps with me at night... and in the morning... and pretty much anytime he zonks out. For the first day, he wouldn't sleep unless he was touching me. He is very obviously just as enamored of me as I am of him. And I am so much calmer... and happier with him.
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It's been so great to have something (especially something so adorable) for me to focus on outside of my pain- which this cycle... has been pretty bad. I needed this little ball of fluff. He's been good medicine for me.
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Kris says he's the best therapy money didn't buy. And she's right. Who knew, all I really needed was a tiny, orange, mewing ball of fluff.
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Sometimes, you just need something else to love to re-energize you.
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Now, I just have to figure out how to smuggle him into Chemo with me next Thursday so he can keep me equally calm then... when I really need it.
You Deserve to Know
I spent the night/morning putting all the posts together for this blog. They're backdated to the days I originally wrote them, on another blog, in another place that shall remain nameless.
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And it was interesting, to sort of... watch my own journey from start to- well, not to finish, but to now. I wonder if I should go back not just to the diagnostic days, but back to the year when I was undiagnosed and in pain. That's a part of this journey too.
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But those days are so scattered. With no real pattern except the pain. And maybe I will go back and fill in those spaces someday. For now, it's emotional enough to watch the last 7 months unfold all over again.
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It's a strange thing, Cancer. To treat it, you let them pump poison into your body- but you have to convince yourself it's not. Your body disintigrates, your hair falls out, your bones ache, your joints throb.
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But that's the "cure".
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And you do it, because the alternative is... what? Dying of Cancer?
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I'm one of the lucky ones. Even if you account for my year of undiagnosed symptoms, my Cancer journey is basically... a 2 year investment. When it's over, ultimately, I'll find a new job. I'll have a new life. In so many ways, Cancer is giving me a chance to start over. To start fresh.
.
And I know a lot of this blog is raw emotion, and bad language, and pain... but I think you should know that I am not without hope. And as much as I decry being anyone's hero because I have Cancer- there IS strength and courage here too.
.
But when I started blogging about my Cancer, I decided to be honest. Partly because I needed a place to just... vent, but partly because- the only thing you ever see about Cancer and Cancer fighting is this composite of the Strong, the Courageous, the Hopeful Cancer Warrior. And while all of that IS true, there is so much more to it than that- and I think it is just as important that people see the nitty-gritty that lives underneath this facade of pink.
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I was talking to Kris about just that. About the difference between the reality of Cancer, and the pretty, shiny, happy picture of seas of women in pink survivor shirts. And maybe it is important that we keep that facade, or some of it anyway. Maybe not so much for the victims, for the fighters- but for their caretakers. For the families who walk along side us in these journeys.
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Maybe for them, we need to maintain that pretty pink photo-op.
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But I think in doing so, in protecting those we love- we fail those that come after us. The girls, and women who walk these steps after us- who will have to be scared, and surprised, and devastated. Because they deserve to know what they're up against. They deserve to know what may actually be coming. Not to scare them. I don't want to scare future Cancer patients.
.
But I know how it feels, to raise a hand to my thinning hair, to have tears in my eyes from a pain I didn't know was coming. To lie in bed awake and hurting, surprised by the creaking in my bones, the aching in my joints.
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I want this, ultimately, to be a message that is hopeful. I will beat Cancer. But I think that honesty is just as, if not more, important.
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I will not be the last woman with Cancer. And to those that come after me, I want them to know the truth about what Cancer can be.
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Because it is a battle.
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The good news is, for many of us- it's one that can be won. It can be one that we walk away from ultimately. As my adopted mom used to say: This too shall pass.
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This too shall pass. But you deserve to know about the journey you'll be on.
.
And it was interesting, to sort of... watch my own journey from start to- well, not to finish, but to now. I wonder if I should go back not just to the diagnostic days, but back to the year when I was undiagnosed and in pain. That's a part of this journey too.
.
But those days are so scattered. With no real pattern except the pain. And maybe I will go back and fill in those spaces someday. For now, it's emotional enough to watch the last 7 months unfold all over again.
.
It's a strange thing, Cancer. To treat it, you let them pump poison into your body- but you have to convince yourself it's not. Your body disintigrates, your hair falls out, your bones ache, your joints throb.
.
But that's the "cure".
.
And you do it, because the alternative is... what? Dying of Cancer?
.
I'm one of the lucky ones. Even if you account for my year of undiagnosed symptoms, my Cancer journey is basically... a 2 year investment. When it's over, ultimately, I'll find a new job. I'll have a new life. In so many ways, Cancer is giving me a chance to start over. To start fresh.
.
And I know a lot of this blog is raw emotion, and bad language, and pain... but I think you should know that I am not without hope. And as much as I decry being anyone's hero because I have Cancer- there IS strength and courage here too.
.
But when I started blogging about my Cancer, I decided to be honest. Partly because I needed a place to just... vent, but partly because- the only thing you ever see about Cancer and Cancer fighting is this composite of the Strong, the Courageous, the Hopeful Cancer Warrior. And while all of that IS true, there is so much more to it than that- and I think it is just as important that people see the nitty-gritty that lives underneath this facade of pink.
.
I was talking to Kris about just that. About the difference between the reality of Cancer, and the pretty, shiny, happy picture of seas of women in pink survivor shirts. And maybe it is important that we keep that facade, or some of it anyway. Maybe not so much for the victims, for the fighters- but for their caretakers. For the families who walk along side us in these journeys.
.
Maybe for them, we need to maintain that pretty pink photo-op.
.
But I think in doing so, in protecting those we love- we fail those that come after us. The girls, and women who walk these steps after us- who will have to be scared, and surprised, and devastated. Because they deserve to know what they're up against. They deserve to know what may actually be coming. Not to scare them. I don't want to scare future Cancer patients.
.
But I know how it feels, to raise a hand to my thinning hair, to have tears in my eyes from a pain I didn't know was coming. To lie in bed awake and hurting, surprised by the creaking in my bones, the aching in my joints.
.
I want this, ultimately, to be a message that is hopeful. I will beat Cancer. But I think that honesty is just as, if not more, important.
.
I will not be the last woman with Cancer. And to those that come after me, I want them to know the truth about what Cancer can be.
.
Because it is a battle.
.
The good news is, for many of us- it's one that can be won. It can be one that we walk away from ultimately. As my adopted mom used to say: This too shall pass.
.
This too shall pass. But you deserve to know about the journey you'll be on.
Friday, October 19, 2012
Pink Pony Panders
What would be even better? Is if Ralph Lauren would just donate $25,000 to the Cancer Society flat out instead of pandering for customers on the guise of caring about breast cancer.ralphlauren:
Ralph Lauren Pink PonyFor each note on this post during the month of October, Ralph Lauren Corporation will donate $1 to the Pink Pony Fund of the Polo Ralph Lauren Foundation up to $25,000. To learn more about the Pink Pony Fund please visit RalphLauren.com/PinkPony.
Pink Pony purchases give 10% of the price back to the foundation.
So for a shirt that costs about $1 to make probably, that they will sell for $40+ Cancer research will get $4. Wow. Impressive.
Thursday, October 18, 2012
Quick
3am and it’s clockwork, my body screaming.
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Tonight, my head too, an additional thrum to the screeching of my shins, my ankles…. the occasional twinge in my forearms.
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2 days without pain and now at 3am I sob. My body refuses to be comfortable. Too hot, too cold, too much pain.
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Intense enough to make me nauseated. An unease that radiates into the spaces that aren’t in pain.
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I took 2 norco, and the first of the gabapentin. And I pray. That it’s quick. That it knocks me out. Because again… my best bet is to be unconscious for the worst of it- although I may be too late to avoid it altogether.
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I pushed too hard today. I should have known better. And later… do we go to the fair? Or do I give up, and spend my day trying to not feel, a few hours at a time?
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I still can’t figure out how to live with this level of pain. Can’t figure out how to work around it- except to try and not be awake for it at all.
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Tonight, my head too, an additional thrum to the screeching of my shins, my ankles…. the occasional twinge in my forearms.
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2 days without pain and now at 3am I sob. My body refuses to be comfortable. Too hot, too cold, too much pain.
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Intense enough to make me nauseated. An unease that radiates into the spaces that aren’t in pain.
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I took 2 norco, and the first of the gabapentin. And I pray. That it’s quick. That it knocks me out. Because again… my best bet is to be unconscious for the worst of it- although I may be too late to avoid it altogether.
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I pushed too hard today. I should have known better. And later… do we go to the fair? Or do I give up, and spend my day trying to not feel, a few hours at a time?
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I still can’t figure out how to live with this level of pain. Can’t figure out how to work around it- except to try and not be awake for it at all.
Monday, October 15, 2012
Gaba
Got a message back from my RN and they’re going to prescribe Gabapentin to help with the nerve pain and refill my hydrocodone. So hopefully tonight and on the next cycle the pain will be a lot more manageable.
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I have not looked up the Gabapentin but to be honest, I really don’t care about anything else as long as it handles the pain better than the norco alone.
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Once I zonked out last night, it’s been better since I got up today. Feet are still … not numb, but not.. normal. She said to let them know if that gets worse. But I go in next Thursday for my next appointment and my next chemo cycle too so I can’t imagine it being bad enough to need an extra appointment before then.
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Anywho, hopefully the pain from this cycle is winding down. I hope.
Pain Cycle
I don’t understand the pain issues. I just don’t. I was like 95% pain free all damn day. I didn’t overdo it, I didn’t push my limits. I was grateful. But why now, at 3am, out of fucking nowhere…. Is it suddenly so bad again that I honestly want to cut my feet off at the ankle?
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The pain this cycle has been so much worse and so unpredictable. And my feet BTW are definitely losing sensation. I’m going to email the NP tomorrow to let them know. Plus I need her to authorize a refill on the vico.
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Getting real tired of this bullshit of a side effect.
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Can any of my chemo friends relate to this? Cause I’m legitimately frustrated and could use some solidarity
Saturday, October 13, 2012
2 More Sessions
I’m home.
Well… the craft fair wasn’t as busy as I was hoping.
I did sell 5 adult necklaces and 5 kids ones. I made about $160 all told. I was really hoping for a lot more. BUT for a first fair at an elementary school- it could have been worse.
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I am in a lot of pain. I have been all day to be honest. A few steps below last night, but it’s creeping back up there. I took another dose of Vico but it’s not really touching it. I may have to do nyquil again to try and sleep through the worst of it.
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I’m going to have to call my Onc. Nurse on Monday to request a refill, and to let them know that I’m definitely losing sensation in my feet. :/ I’m supposed to report any numbness or loss of sensation because it’s a possible side effect from one of the chemo drugs, but this is the first time it’s been noticeable enough for it to be worth letting them know. Not sure how worried I should be about it to be honest. The pain is a lot more of an issue than my slightly numbed feet.
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I’m not going to lie, this round of chemo is kicking my ass. Totally different than the first round, and while I’m glad not to have the nausea that I had (although I still think that was mostly because of the radiation)… I’d almost rather deal with that than to be in the kind of pain I’m in.
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:shrug:
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2 more sessions and then I am hopefully declared Cancer free.
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It was nice to be able to spend some time with my Aunt and the little cousins (when they weren’t out playing with the kids activities). And I even sold 1 photo which was cool.
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Hopefully I’ll be able to do more craft/arts fairs in the future. But for now, I’m glad to be home and heading to bed. Time for nyquil and passing out to avoid the pain.
Well… the craft fair wasn’t as busy as I was hoping.
I did sell 5 adult necklaces and 5 kids ones. I made about $160 all told. I was really hoping for a lot more. BUT for a first fair at an elementary school- it could have been worse.
.
I am in a lot of pain. I have been all day to be honest. A few steps below last night, but it’s creeping back up there. I took another dose of Vico but it’s not really touching it. I may have to do nyquil again to try and sleep through the worst of it.
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I’m going to have to call my Onc. Nurse on Monday to request a refill, and to let them know that I’m definitely losing sensation in my feet. :/ I’m supposed to report any numbness or loss of sensation because it’s a possible side effect from one of the chemo drugs, but this is the first time it’s been noticeable enough for it to be worth letting them know. Not sure how worried I should be about it to be honest. The pain is a lot more of an issue than my slightly numbed feet.
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I’m not going to lie, this round of chemo is kicking my ass. Totally different than the first round, and while I’m glad not to have the nausea that I had (although I still think that was mostly because of the radiation)… I’d almost rather deal with that than to be in the kind of pain I’m in.
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:shrug:
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2 more sessions and then I am hopefully declared Cancer free.
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It was nice to be able to spend some time with my Aunt and the little cousins (when they weren’t out playing with the kids activities). And I even sold 1 photo which was cool.
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Hopefully I’ll be able to do more craft/arts fairs in the future. But for now, I’m glad to be home and heading to bed. Time for nyquil and passing out to avoid the pain.
Thursday, October 11, 2012
A Reminder
When you’re sitting at home signing checks with your pink ribbon pen in a checkbook with pink ribbons on it and sipping your coffee from a pink coffee mug.
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Take a minute to realize that products that cost companies PENNIES to make, are being done up in pink and sold for RIDICULOUS markups. And we buy them, because the package inevitably reads, “a portion of this purchase will be donated to breast cancer research.”
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Look at the back of those products. The percentage donated is generally between 1 and 10%.
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So the 14c production cost of the pen being sold for $14.99 garners $1.40 towards “research.” (at best) Research that more often than not goes to Komen. Whose distribution of funds is SERIOUSLY sketchy. Also, most of those campaigns include an upper limit. As in… we’ll donate for every purchase UP TO $50,000 or whatever. Which means after they give their $50k, the rest is puuuure pink profit.
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If you really want to make an impact. If you really want to give your money to Cancer research, and Cancer care… donate to the Cancer Society. Or, find someone with cancer who’s raising funds for their own care, and donate directly. Try gofundme and search for public fundraisers under medical needs.
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Because otherwise, all you’re doing is funding the problem.
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Because let’s not forget that a lot of these, “a portion of profits” companies, produce products and byproducts that have been proven to CAUSE CANCER.
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Don’t buy pink products. Donate to causes that actually make a difference.
.
Take a minute to realize that products that cost companies PENNIES to make, are being done up in pink and sold for RIDICULOUS markups. And we buy them, because the package inevitably reads, “a portion of this purchase will be donated to breast cancer research.”
.
Look at the back of those products. The percentage donated is generally between 1 and 10%.
.
So the 14c production cost of the pen being sold for $14.99 garners $1.40 towards “research.” (at best) Research that more often than not goes to Komen. Whose distribution of funds is SERIOUSLY sketchy. Also, most of those campaigns include an upper limit. As in… we’ll donate for every purchase UP TO $50,000 or whatever. Which means after they give their $50k, the rest is puuuure pink profit.
.
If you really want to make an impact. If you really want to give your money to Cancer research, and Cancer care… donate to the Cancer Society. Or, find someone with cancer who’s raising funds for their own care, and donate directly. Try gofundme and search for public fundraisers under medical needs.
.
Because otherwise, all you’re doing is funding the problem.
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Because let’s not forget that a lot of these, “a portion of profits” companies, produce products and byproducts that have been proven to CAUSE CANCER.
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Don’t buy pink products. Donate to causes that actually make a difference.
Wednesday, October 10, 2012
To The Teeth
omg. everything hurts. everything hurts everything hurts.
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fucking hell. I just took my pain pills, and a swig of nyquil. I can’t even handle being awake for this much fucking pain. ohmygod.
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I guess I shouldnt have tried to do the movie today. goddammit.
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omg everything hurts. down to my fucking teeth. fuck.
Tuesday, October 9, 2012
It Hurts
By the way, on the list of things they don’t tell you about chemo?
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When your hair starts falling out- it hurts. Even though I shaved my head like… 3 or 4 weeks ago, there w
There still patches where my hair hadn’t fallen out yet. I can tell those patches are starting to come out because I’ve just realized that part of my discomfort right now- is my scalp just… in pain.
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It’s not like… horrifying or anything. But it was definitely not something I expected.
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Fun.
Monday, October 8, 2012
I Am Not Your Hero
I am not a hero because I’m fighting Cancer.
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I’m not worthy of someone’s pedestal because I am choosing to fight for my life.
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I am not more beautiful, more courageous, more strong, or more worthwhile because I am fighting to be Cancer Free.
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And I am tired of being told that I am.
*This got long. And very very honest. And sometimes, graphic. So read at your own risk. But I’ve needed to vent this for a long time. So, fueled by pain and painkillers and frustration… here it is.*
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I am tired of this pinkwashed view of Cancer patients. Of their strength and beauty and wisdom. My Cancer fight is not pretty. My Cancer fight is not laudable. It just IS.
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In fact, most of the time, it’s pretty unpleasant. Sometimes downright gross, humiliating even.
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Komen, and Pinktober, and all of these campaings to “raise awareness” (and line corporate pockets) have created this view of Cancer patients as though our diagnosis and our struggles turn us instantly into angels… or in the sadder cases- martyrs.
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But thanks to all the pretty propaganda, I wonder how many of us are really prepared for what it means to be a Cancer Warrior. The world sees the fight against Cancer in a sea of pink product lines. In women wearing pretty wigs and scarves, crowded in clusters of pink waiting to walk for 3 days towards “a cure.”
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The world sees strength and hope and courage and signing credit card slips with pretty pink pens adorned with ribbons. But the honest truth of being a Cancer Warrior is not so neat, not so pretty. And maybe it was just me, unprepared. Maybe I’m the one out of the loop. But I doubt it. I have seen the world the way I was told to see the world. The way we’re all told to see that world.
.
Which isn’t to say that fighting Cancer isn’t a hopeful thing. But it’s not awash in pretty pink ribbons- and not just because we don’t all just get breast cancer.
.
The truth about Cancer, about being a Cancer patient, a Cancer Warrior… is frightening. It’s painful, and stressful, and oftentimes- humiliating.
.
It’s surgery. It’s recovery. It’s popping a staple and oozing in a hospital room at 4am. It’s blood and scars and lines and bruises.
.
It’s finding a vein after 4 sticks because the nurse didn’t listen when you said your iv was slipping. It’s pain. It’s having to call for help to get to the bathroom. Having to ask a stranger in scrubs to wipe your ass because you can’t reach that far.
.
It’s not showering for 3 days because you can’t stand to have a relative stranger see you naked in order to help you.
.
It’s walking squares around the hospital floor with a walker, and a tiny PT nurse at your elbow. Trying to prove that you are capable of moving on your own so that maybe, MAYBE you can go home.
.
It’s waiting to heal well enough to try and start treatment. It’s wondering if you’ll heal in time to be able to partake in a research study that’s better monitored than standard treatment.
.
It’s realizing that the study is a hit and miss and that what you really want is best achieved outside of it. It’s late nights reading about your diagnosis, reading statistics, gathering facts. It’s realizing you fight or you die. It’s realizing how close you could have come to dying in the first place.
.
It’s fear. It’s stress. It’s discomfort. It’s saying the words, “I’d rather go overkill on treatment now, then wish I had later on.” It’s realizing that even once you are someday declared Cancer free- you will always, ALWAYS live in fear of it coming back. Because it can always come back.
.
It’s being home. Exhausted. Overwrought. It’s losing your job for missing too much time. It’s going from being neurotically independent to having to rely on EVERYONE for EVERYTHING. It’s daily trips to the hospital in 105* weather to lay on a table for 10 minutes while they shoot you full of radiation. It’s 3 tiny dot tattoos on your abdomen to make the process faster to line up. It’s fighting the urge to throw up every hour of every day for weeks. It’s diarrhea. It’s spending 10 minutes trying to eat, and 3 hours in the bathroom.
.
It’s a panic attack at your first chemo session. The sheer terror of the unknown. Its the taste of the heparin flushing your port. It’s stinging and itching. It’s feeling a healing poison seep through your body. It’s the sheer weightless exhaustion of that first treatment.
.
It’s watching your body disintegrate in the mirror. It’s being grateful that you started out fat because otherwise- you’d look like a holocaust survivor. It’s not recognizing yourself in the car window, not understanding the shape and feel of your body. It’s feeling 2 years of self-work on body peace slip away from you inch by inch, pound by pound, meal by meal.
.
It’s the unspeakable, indescribable trauma of watching your hair fall out in clumps. In headaches, and pain and the feel of your skin crawling on your scalp. It’s finally giving up and shaving off what’s left. Because it is the only way to stop wanting to kill yourself when you look in the mirror.
.
It’s buying hats and scarves and trying them on as carefully as you can- so that no one can see what you’re hiding. It’s watching people start to recognize you. To recognize your disease. In public. It’s watching their faces change, watching pity wash over an otherwise normal smile, watching it flood their eyes.
.
It’s trying to find something to eat that doesn’t taste like burnt rubber. It’s plucking out your own few eyelashes because it’s less painful physically than constantly fishing them out of your eyes as they fall out on their own. It’s the irony of your eyebrows falling out, but your leg hair remaining resolutely in place.
.
It’s debilitating pain. It’s feeling like your bones are filled with stuffing because they are weak without the strong thrum of marrow that is destroyed by treatment. It’s eating Vicodin that doesn’t really take care of it all, but you take it anyway because otherwise it’s not even worth opening your eyes. And sometimes, it still isn’t.
.
It’s hiding from friends and family because all you ever want to do is scream. Because the only thing you can do is complain, or vent, or be angry because you are sick and tired and in pain. So you spare them. You hide.
.
It’s ugly. It’s disgusting. It’s painful.
.
It’s not pretty, or strong, or hopeful.
.
But we do it. Because we want to live. Because I want to live. And maybe that in itself is strong, or courageous, or hopeful.
.
I resent how ill-prepared I was to start my Cancer journey. I resent the halo that’s placed on the head of a Cancer Patient by sheer virtue of diagnosis. It’s great, as long as you don’t have to join their ranks.
.
But as a Cancer Patient, eyes aglow with the flood of pink-washing I’d seen for so many years, one of the hardest things about this whole process was realizing how un-pink Cancer really is.
.
I deserved more honesty than that.
.
I’m tired of this automated response of “You’re so brave.”
.
I’m not brave. I just want to LIVE through Cancer.
.
I’m not worthy of someone’s pedestal because I am choosing to fight for my life.
.
I am not more beautiful, more courageous, more strong, or more worthwhile because I am fighting to be Cancer Free.
.
And I am tired of being told that I am.
*This got long. And very very honest. And sometimes, graphic. So read at your own risk. But I’ve needed to vent this for a long time. So, fueled by pain and painkillers and frustration… here it is.*
.
I am tired of this pinkwashed view of Cancer patients. Of their strength and beauty and wisdom. My Cancer fight is not pretty. My Cancer fight is not laudable. It just IS.
.
In fact, most of the time, it’s pretty unpleasant. Sometimes downright gross, humiliating even.
.
Komen, and Pinktober, and all of these campaings to “raise awareness” (and line corporate pockets) have created this view of Cancer patients as though our diagnosis and our struggles turn us instantly into angels… or in the sadder cases- martyrs.
.
But thanks to all the pretty propaganda, I wonder how many of us are really prepared for what it means to be a Cancer Warrior. The world sees the fight against Cancer in a sea of pink product lines. In women wearing pretty wigs and scarves, crowded in clusters of pink waiting to walk for 3 days towards “a cure.”
.
The world sees strength and hope and courage and signing credit card slips with pretty pink pens adorned with ribbons. But the honest truth of being a Cancer Warrior is not so neat, not so pretty. And maybe it was just me, unprepared. Maybe I’m the one out of the loop. But I doubt it. I have seen the world the way I was told to see the world. The way we’re all told to see that world.
.
Which isn’t to say that fighting Cancer isn’t a hopeful thing. But it’s not awash in pretty pink ribbons- and not just because we don’t all just get breast cancer.
.
The truth about Cancer, about being a Cancer patient, a Cancer Warrior… is frightening. It’s painful, and stressful, and oftentimes- humiliating.
.
It’s surgery. It’s recovery. It’s popping a staple and oozing in a hospital room at 4am. It’s blood and scars and lines and bruises.
.
It’s finding a vein after 4 sticks because the nurse didn’t listen when you said your iv was slipping. It’s pain. It’s having to call for help to get to the bathroom. Having to ask a stranger in scrubs to wipe your ass because you can’t reach that far.
.
It’s not showering for 3 days because you can’t stand to have a relative stranger see you naked in order to help you.
.
It’s walking squares around the hospital floor with a walker, and a tiny PT nurse at your elbow. Trying to prove that you are capable of moving on your own so that maybe, MAYBE you can go home.
.
It’s waiting to heal well enough to try and start treatment. It’s wondering if you’ll heal in time to be able to partake in a research study that’s better monitored than standard treatment.
.
It’s realizing that the study is a hit and miss and that what you really want is best achieved outside of it. It’s late nights reading about your diagnosis, reading statistics, gathering facts. It’s realizing you fight or you die. It’s realizing how close you could have come to dying in the first place.
.
It’s fear. It’s stress. It’s discomfort. It’s saying the words, “I’d rather go overkill on treatment now, then wish I had later on.” It’s realizing that even once you are someday declared Cancer free- you will always, ALWAYS live in fear of it coming back. Because it can always come back.
.
It’s being home. Exhausted. Overwrought. It’s losing your job for missing too much time. It’s going from being neurotically independent to having to rely on EVERYONE for EVERYTHING. It’s daily trips to the hospital in 105* weather to lay on a table for 10 minutes while they shoot you full of radiation. It’s 3 tiny dot tattoos on your abdomen to make the process faster to line up. It’s fighting the urge to throw up every hour of every day for weeks. It’s diarrhea. It’s spending 10 minutes trying to eat, and 3 hours in the bathroom.
.
It’s a panic attack at your first chemo session. The sheer terror of the unknown. Its the taste of the heparin flushing your port. It’s stinging and itching. It’s feeling a healing poison seep through your body. It’s the sheer weightless exhaustion of that first treatment.
.
It’s watching your body disintegrate in the mirror. It’s being grateful that you started out fat because otherwise- you’d look like a holocaust survivor. It’s not recognizing yourself in the car window, not understanding the shape and feel of your body. It’s feeling 2 years of self-work on body peace slip away from you inch by inch, pound by pound, meal by meal.
.
It’s the unspeakable, indescribable trauma of watching your hair fall out in clumps. In headaches, and pain and the feel of your skin crawling on your scalp. It’s finally giving up and shaving off what’s left. Because it is the only way to stop wanting to kill yourself when you look in the mirror.
.
It’s buying hats and scarves and trying them on as carefully as you can- so that no one can see what you’re hiding. It’s watching people start to recognize you. To recognize your disease. In public. It’s watching their faces change, watching pity wash over an otherwise normal smile, watching it flood their eyes.
.
It’s trying to find something to eat that doesn’t taste like burnt rubber. It’s plucking out your own few eyelashes because it’s less painful physically than constantly fishing them out of your eyes as they fall out on their own. It’s the irony of your eyebrows falling out, but your leg hair remaining resolutely in place.
.
It’s debilitating pain. It’s feeling like your bones are filled with stuffing because they are weak without the strong thrum of marrow that is destroyed by treatment. It’s eating Vicodin that doesn’t really take care of it all, but you take it anyway because otherwise it’s not even worth opening your eyes. And sometimes, it still isn’t.
.
It’s hiding from friends and family because all you ever want to do is scream. Because the only thing you can do is complain, or vent, or be angry because you are sick and tired and in pain. So you spare them. You hide.
.
It’s ugly. It’s disgusting. It’s painful.
.
It’s not pretty, or strong, or hopeful.
.
But we do it. Because we want to live. Because I want to live. And maybe that in itself is strong, or courageous, or hopeful.
.
I resent how ill-prepared I was to start my Cancer journey. I resent the halo that’s placed on the head of a Cancer Patient by sheer virtue of diagnosis. It’s great, as long as you don’t have to join their ranks.
.
But as a Cancer Patient, eyes aglow with the flood of pink-washing I’d seen for so many years, one of the hardest things about this whole process was realizing how un-pink Cancer really is.
.
I deserved more honesty than that.
.
I’m tired of this automated response of “You’re so brave.”
.
I’m not brave. I just want to LIVE through Cancer.
Sunday, October 7, 2012
Birth Control- IS MEDICINE
I saw this post on tumblr:
The following is my (very angry) reaction:
Dear OP,
You are wrong. You are incredibly, ridiculously, DANGEROUSLY wrong.
.
I was raised to believe the way that you do. That birth control is JUST that- birth.control. I was raised that you don’t go on birth control unless you are planning to have sex. Because if you’re not planning on having sex, it’s just not necessary. There’s no birth to control.
.
Do you want to know how I found out differently?
.
I got CANCER. I got Uterine (also known as endometrial) Cancer. And while it’s true there is no guarantee being on birth control would have prevented it: it would have lessened my risk CONSIDERABLY. In fact, it’s been shown that having been on regular birth control medication for an extended number of years can drastically reduce the risk of Endometrial (and other gynecological cancers). What that means is that it is MEDICINE.
.
On top of the preventative aspects of being on Birth Control, I also didn’t see a gynecologist until I was 29 and in excruciating pain (you know, because of my CANCER). If I’d been on regular birth control from the age I should have been (having started my period at 9, age 15 probably would have been a good time to start), I’d have been seeing a gyno regularly, and maybe it all would have been caught earlier on- like, before it hit my lymph nodes. But I’m guessing gynos aren’t on your listing of “legitimate” medicine and doctors. After all, no sex, no babies, no gyno needed right?
.
I am currently on my second round of Chemo. In July, thanks to chemo and daily radiation treatments, I lost my job. Why? Because after an emergency D&C (the “medical procedure” not the “abortion method”), I was instructed not to return to work until after my Hysterectomy (during which they removed my uterus, ovaries, and fallopian tubes). After my hysterectomy there was a complication with my incision’s healing which kept me from returning to work. Then, it was time for a month of chemo and daily radiation.
.
Now, it’s October. I’m on my second round of chemo, and it blows OP. Fuck all the “strong cancer patient” shit, all the “oh brave fighter” propaganda. You know Cancer treatment is? It’s a fucking bastard.
.
You know what else it is? Medicine.
.
You know what else is Medicine?
.
BIRTH. CONTROL.
.
So I’ll tell you what OP. I have 2 more chemo sessions left. If you want to talk more about what Birth Control is, and isn’t? Why don’t you come down to Dallas. You can sit with me while they pump me full of poison, and hold my hand when my anxiety gets the best of me. You can call the nurse if I have an allergic reaction and can’t breathe (again). Then you can stay with us for the next 3 weeks and I’ll keep you awake while I’m awake, and when I’m ready to vomit, you can hold my scarf away from my face (since there’s no hair left to hold back anymore). You can sweep up my eyelashes and eyebrow hairs off my desk as they fall. You can finish finding and cleaning up the chunks of hair that started falling out of my head before I gave up and shaved it off, I found a few lost “clumps” just this evening actually.
.
You can try to find something I can eat, or drink, that doesn’t taste completely wrong. You can try to see friends and family and have some kind of active life with me around my bone-wrenching exhaustion.
.
And when my bones and joints ache and scream, I’ll have someone bash in your shins with a baseball bat so you can understand the kind of pain that I live in.
.
And if after all that you still want to tell me that Birth Control is not medicine? Then you can go jump off a fucking cliff and do the world a favor.
.
“Birth Control” is the least accurately named product in the medical field. And you are an ignorant asshole.
"Do women have medical issues with their lady-parts? Sure.
Should they be able to get help with those issues? Absolutely.
But that’s what doctors and legit medicine are for.
I’ll say it again: Women, birth control is not medicine, at least not in the “take two of these and call me in the morning” sense of the word. It isn’t designed for anything but the prevention of conception, and you have no legal right to expect it for free simply because you cry about needing it. Grow up.
Also, as hard as it apparently is to believe, you aren’t just going to spontaneously die without it, either. You think Joan of Arc or Elizabeth I or Cleopatra or any of the other women history remembers for their greatness had birth control? Of course not! But they didn’t let that stop them from being ballers. They didn’t whine like bitches about how mean and unfair it all was. No, they lived their lives, and lived them so well that even today we remember them.
So stop confusing birth control with actual medicine. Find insurance that’ll cover it for you if you can’t / don’t want to pay out of pocket. Stop expecting me to buy your pill or your shot or whatever else, and let that be the end of it. "
The following is my (very angry) reaction:
Dear OP,
You are wrong. You are incredibly, ridiculously, DANGEROUSLY wrong.
.
I was raised to believe the way that you do. That birth control is JUST that- birth.control. I was raised that you don’t go on birth control unless you are planning to have sex. Because if you’re not planning on having sex, it’s just not necessary. There’s no birth to control.
.
Do you want to know how I found out differently?
.
I got CANCER. I got Uterine (also known as endometrial) Cancer. And while it’s true there is no guarantee being on birth control would have prevented it: it would have lessened my risk CONSIDERABLY. In fact, it’s been shown that having been on regular birth control medication for an extended number of years can drastically reduce the risk of Endometrial (and other gynecological cancers). What that means is that it is MEDICINE.
.
On top of the preventative aspects of being on Birth Control, I also didn’t see a gynecologist until I was 29 and in excruciating pain (you know, because of my CANCER). If I’d been on regular birth control from the age I should have been (having started my period at 9, age 15 probably would have been a good time to start), I’d have been seeing a gyno regularly, and maybe it all would have been caught earlier on- like, before it hit my lymph nodes. But I’m guessing gynos aren’t on your listing of “legitimate” medicine and doctors. After all, no sex, no babies, no gyno needed right?
.
I am currently on my second round of Chemo. In July, thanks to chemo and daily radiation treatments, I lost my job. Why? Because after an emergency D&C (the “medical procedure” not the “abortion method”), I was instructed not to return to work until after my Hysterectomy (during which they removed my uterus, ovaries, and fallopian tubes). After my hysterectomy there was a complication with my incision’s healing which kept me from returning to work. Then, it was time for a month of chemo and daily radiation.
.
Now, it’s October. I’m on my second round of chemo, and it blows OP. Fuck all the “strong cancer patient” shit, all the “oh brave fighter” propaganda. You know Cancer treatment is? It’s a fucking bastard.
.
You know what else it is? Medicine.
.
You know what else is Medicine?
.
BIRTH. CONTROL.
.
So I’ll tell you what OP. I have 2 more chemo sessions left. If you want to talk more about what Birth Control is, and isn’t? Why don’t you come down to Dallas. You can sit with me while they pump me full of poison, and hold my hand when my anxiety gets the best of me. You can call the nurse if I have an allergic reaction and can’t breathe (again). Then you can stay with us for the next 3 weeks and I’ll keep you awake while I’m awake, and when I’m ready to vomit, you can hold my scarf away from my face (since there’s no hair left to hold back anymore). You can sweep up my eyelashes and eyebrow hairs off my desk as they fall. You can finish finding and cleaning up the chunks of hair that started falling out of my head before I gave up and shaved it off, I found a few lost “clumps” just this evening actually.
.
You can try to find something I can eat, or drink, that doesn’t taste completely wrong. You can try to see friends and family and have some kind of active life with me around my bone-wrenching exhaustion.
.
And when my bones and joints ache and scream, I’ll have someone bash in your shins with a baseball bat so you can understand the kind of pain that I live in.
.
And if after all that you still want to tell me that Birth Control is not medicine? Then you can go jump off a fucking cliff and do the world a favor.
.
“Birth Control” is the least accurately named product in the medical field. And you are an ignorant asshole.
Thursday, October 4, 2012
Halfway... No, Really.
Wait time at Simmons was redonkulous today. Got there on time for once (which is good, cause next time I have to be there at 7:55am ew), and got my own room for port access which went well.
.
Still a little under the weather, but since I’ve been fever free since Sunday, most of my coughing is gone and congestion is only minimal. So, I got the all clear for treatment today.
.
After seeing Dr. K, which was something of a wait in and of itself, I was deposited back in the main waiting room at around 10:30am. At NOON, they finally called me to a treatment room :headdesk: It wasn’t until 12:15 that I was hooked up and dripping.
.
I had a lot of time to watch the world while I was waiting- well, watch the march of Cancer before me. I’m struck that each time I go to Simmons that room is busier and busier. More and more filled chairs. More hats and scarves and wigs (good and bad). I can pick out the new people now: thicker stacks of paperwork, a mix of confidence (it won’t be me, it’s not happening to me) and fear (what if it’s really bad?). Women waiting in high heeled shoes, leaning against the wall twirling their white paper wristbands. In a few more weeks, they’ll sit too. In sneakers, house-shoes, sandals. They’ll learn to conserve their energy like the rest of us.
.
But the thing that struck me most today is something that’s sort of passed through my consciousness ever since this all started. I looked around me, at the families, the couples, even those daring to appear alone for appointments and treatments and tests. Mine is inevitably the youngest face in the room. Sometimes there will be someone my age, or younger- but their wrists are empty. No white label marking them “patient.” They’re the support team, not the fighters.
.
I’m not in the part of the center where they treat the young cancers. No brave children here, or annoyed teens. No bright colors and murals. This is a sea of middle-age, late life fighters. 50s, 60s, older. And me. The girl with the 60 year old woman’s cancer. And I see the looks sometimes, as though maybe I’m lost. Or in the wrong waiting room. And they the nurse calls me. Confusion clarifies into pity. Want to feel about 2 feet tall? Get the, “you poor girl” look from a roomful of other Cancer patients.
.
And I struggle- not to be angry. Not with the people around me, but with this body. This body that betrayed me. Except it didn’t really. If you want to lay it all out- this is payback for years of self-hatred, self-loathing, self-defeat. And I know it doesn’t really work like that. But sometimes, I can almost hear my body saying, “all you had to do was learn to love me sooner.”
.
But, I’m home again. Exhausted. Treatment itself was odd, but this round seems to just BE odd. No allergic reaction this time thankfully. They pumped me full of benedryl FIRST, which made me want to jump out of my skin for about 30 minutes. I was raising my left arm and rolling my wrist compulsively for the umpteenth time when the nurse came back in and noticed. Said it’s normal with the benedryl dosage they gave me. She went to request ativan to calm me (which worked eventually).
.
At one point I did get the… lead weight on my chest feeling, but it passed and I still had no trouble breathing so I didn’t even push the button or report it. Seems like the benedryl, obnoxious as it was, did the job.
.
I got hooked up at , 12:15, and was done around 5:15 so it seems the benedryl did the trick and they didn’t have to slow the drip too much.
.
I am exhausted though. I always look worst immediately after treatment. Pale, almost jaundiced, deep set eyes surrounded by circles. I slept most of the way home, then woke up starving (another post chemo issue). We side-tracked to our favorite Chinese place (best to do it before the nausea hits and I’m reduced to ritz for a few days). By the time we were done there, I was done.
.
So, now I’m home. Blogging about chemo and Cancer and the reality of a disease that doesn’t matter because it isn’t in my boobs where it can be marketing and lauded and supported by everyone from pen-makers to porn sites.
.
My bitterness is coming out. I think that means it’s time to stop now. Blogging will probably be sporadic until late next week after the pain wave comes and goes.
.
Still a little under the weather, but since I’ve been fever free since Sunday, most of my coughing is gone and congestion is only minimal. So, I got the all clear for treatment today.
.
After seeing Dr. K, which was something of a wait in and of itself, I was deposited back in the main waiting room at around 10:30am. At NOON, they finally called me to a treatment room :headdesk: It wasn’t until 12:15 that I was hooked up and dripping.
.
I had a lot of time to watch the world while I was waiting- well, watch the march of Cancer before me. I’m struck that each time I go to Simmons that room is busier and busier. More and more filled chairs. More hats and scarves and wigs (good and bad). I can pick out the new people now: thicker stacks of paperwork, a mix of confidence (it won’t be me, it’s not happening to me) and fear (what if it’s really bad?). Women waiting in high heeled shoes, leaning against the wall twirling their white paper wristbands. In a few more weeks, they’ll sit too. In sneakers, house-shoes, sandals. They’ll learn to conserve their energy like the rest of us.
.
But the thing that struck me most today is something that’s sort of passed through my consciousness ever since this all started. I looked around me, at the families, the couples, even those daring to appear alone for appointments and treatments and tests. Mine is inevitably the youngest face in the room. Sometimes there will be someone my age, or younger- but their wrists are empty. No white label marking them “patient.” They’re the support team, not the fighters.
.
I’m not in the part of the center where they treat the young cancers. No brave children here, or annoyed teens. No bright colors and murals. This is a sea of middle-age, late life fighters. 50s, 60s, older. And me. The girl with the 60 year old woman’s cancer. And I see the looks sometimes, as though maybe I’m lost. Or in the wrong waiting room. And they the nurse calls me. Confusion clarifies into pity. Want to feel about 2 feet tall? Get the, “you poor girl” look from a roomful of other Cancer patients.
.
And I struggle- not to be angry. Not with the people around me, but with this body. This body that betrayed me. Except it didn’t really. If you want to lay it all out- this is payback for years of self-hatred, self-loathing, self-defeat. And I know it doesn’t really work like that. But sometimes, I can almost hear my body saying, “all you had to do was learn to love me sooner.”
.
But, I’m home again. Exhausted. Treatment itself was odd, but this round seems to just BE odd. No allergic reaction this time thankfully. They pumped me full of benedryl FIRST, which made me want to jump out of my skin for about 30 minutes. I was raising my left arm and rolling my wrist compulsively for the umpteenth time when the nurse came back in and noticed. Said it’s normal with the benedryl dosage they gave me. She went to request ativan to calm me (which worked eventually).
.
At one point I did get the… lead weight on my chest feeling, but it passed and I still had no trouble breathing so I didn’t even push the button or report it. Seems like the benedryl, obnoxious as it was, did the job.
.
I got hooked up at , 12:15, and was done around 5:15 so it seems the benedryl did the trick and they didn’t have to slow the drip too much.
.
I am exhausted though. I always look worst immediately after treatment. Pale, almost jaundiced, deep set eyes surrounded by circles. I slept most of the way home, then woke up starving (another post chemo issue). We side-tracked to our favorite Chinese place (best to do it before the nausea hits and I’m reduced to ritz for a few days). By the time we were done there, I was done.
.
So, now I’m home. Blogging about chemo and Cancer and the reality of a disease that doesn’t matter because it isn’t in my boobs where it can be marketing and lauded and supported by everyone from pen-makers to porn sites.
.
My bitterness is coming out. I think that means it’s time to stop now. Blogging will probably be sporadic until late next week after the pain wave comes and goes.
Wednesday, October 3, 2012
Naked
I haven’t been out of the house since last Thursday. I’d say I’m getting cabin fever except… I’m kind of “content” to just hide in my bed for awhile.
.
I took a shower. A 4:30 in the morning. I needed to be clean. Confession? I haven’t showered since last Thursday either. Why bother? It’s not like I’m going anywhere. Who cares. I don’t do anything, or work up a sweat. It’s not like I have hair to keep clean.
.
Call it a full on depressive slump.
.
But I took a shower. And I realized why I’ve resisted it so much. It’s been 3 weeks (?) since my hair started falling out, since I shaved my head. I’m down to half an eyebrow over each eye… limited lashes. Pubes are going now. Not that I care about that. That’s a plus as far as I’m concerned.
.
But I realized tonight, after shaving my head stubble at the sink (surprisingly, even though all of my hair is slowly and methodically falling out of my body- my head is still sprouting stubble in the areas that hadn’t fallen out pre-shave. Nature’s fabulous fucking irony)- anyway, I realized as I turned off the shower and reached up- that I still do that: reach up. I put both hands to my head, to wring out my hair before I step onto the bathmat. Even though I haven’t had any hair to wring out for 3 weeks now. It’s like one of those muscle memory things. My arms just go- my hands just… rested on my head and then slid down, slinging water off of invisible hair that no longer exists.
.
And it bothered me. A lot. I mean, it kind of took my breath away for a minute. That realization. And even after that… when I reached for my towel- my arms moved again, unwanted, unwarranted, and the towel landed with a *pouf* covering my head and face and I drew it down, again- wringing nonexistent streams of water from my nonexistent hair. And that’s when I sat down.
.
I want to try and go out today. Just to lunch, or dinner with Kris. Just someplace local. Szechwan maybe. But I am so overwhelmed. Not by social anxiety the way I used to be- the result is the same but the feeling is different. It is anxiety. It is a desire to stay invisible. But it doesn’t come from the same place that it did back in those days. Back in the days when I couldn’t function. Back in the days when I couldn’t work, couldn’t go to the caf, couldn’t even go to classes for so many days that I had to leave college because my anxiety disorder won.
.
The result is the same but it comes from a different place in my body now. A sick place. A tired place. An angry place.
.
A place that isn’t deluded into thinking the world is staring and judging me because I’m a terrible person- but a place that KNOWS the world is staring and judging me… because I’m bald, and wearing a scarf on my head in 90* weather; because I’m wearing a surgical mask below the dark circles at my eyes. Because I look sick. And they’re wondering if I’m contagious, or pitiable… or both.
.
And I am the least invisible person in any room now. That’s what Cancer has done to me this week. This month.
.
It comes from a different place in my body. Not the headspace where my anxiety used to always live. It comes from my gut. Every muscle and every bone and every blink of my eye desperate to just look like everyone else again.
.
And I thought I was beyond such things. I thought I was a warrior, a goddess.
.
But I’m not. Not right now. Not right this second.
.
Because right now I am naked. And in pain. And tired.
.
And I want to wear a sign that says, “I have CANCER so you can STOP STARING NOW!”.
.
And I want to hide in my room, in my bed, and just be invisible to the outside world. Because now I’m the person I used to pity. And I’m not sure if I’m angrier at myself for caring NOW, or for pitying people like me back THEN.
.
I don’t want to be pitied. I just want to be invisible. I just want to be well. I want to not be afraid. Because I am afraid. I’m afraid of my body. I’m afraid of the medicine. I’m afraid of the Cancer and I am afraid that for the rest of my life I’m going to live in a state of quiet fear that even though I beat it once- it could still come back and beat me.
.
So now I’m naked.
.
And all I want to be is invisible.
.
I took a shower. A 4:30 in the morning. I needed to be clean. Confession? I haven’t showered since last Thursday either. Why bother? It’s not like I’m going anywhere. Who cares. I don’t do anything, or work up a sweat. It’s not like I have hair to keep clean.
.
Call it a full on depressive slump.
.
But I took a shower. And I realized why I’ve resisted it so much. It’s been 3 weeks (?) since my hair started falling out, since I shaved my head. I’m down to half an eyebrow over each eye… limited lashes. Pubes are going now. Not that I care about that. That’s a plus as far as I’m concerned.
.
But I realized tonight, after shaving my head stubble at the sink (surprisingly, even though all of my hair is slowly and methodically falling out of my body- my head is still sprouting stubble in the areas that hadn’t fallen out pre-shave. Nature’s fabulous fucking irony)- anyway, I realized as I turned off the shower and reached up- that I still do that: reach up. I put both hands to my head, to wring out my hair before I step onto the bathmat. Even though I haven’t had any hair to wring out for 3 weeks now. It’s like one of those muscle memory things. My arms just go- my hands just… rested on my head and then slid down, slinging water off of invisible hair that no longer exists.
.
And it bothered me. A lot. I mean, it kind of took my breath away for a minute. That realization. And even after that… when I reached for my towel- my arms moved again, unwanted, unwarranted, and the towel landed with a *pouf* covering my head and face and I drew it down, again- wringing nonexistent streams of water from my nonexistent hair. And that’s when I sat down.
.
I want to try and go out today. Just to lunch, or dinner with Kris. Just someplace local. Szechwan maybe. But I am so overwhelmed. Not by social anxiety the way I used to be- the result is the same but the feeling is different. It is anxiety. It is a desire to stay invisible. But it doesn’t come from the same place that it did back in those days. Back in the days when I couldn’t function. Back in the days when I couldn’t work, couldn’t go to the caf, couldn’t even go to classes for so many days that I had to leave college because my anxiety disorder won.
.
The result is the same but it comes from a different place in my body now. A sick place. A tired place. An angry place.
.
A place that isn’t deluded into thinking the world is staring and judging me because I’m a terrible person- but a place that KNOWS the world is staring and judging me… because I’m bald, and wearing a scarf on my head in 90* weather; because I’m wearing a surgical mask below the dark circles at my eyes. Because I look sick. And they’re wondering if I’m contagious, or pitiable… or both.
.
And I am the least invisible person in any room now. That’s what Cancer has done to me this week. This month.
.
It comes from a different place in my body. Not the headspace where my anxiety used to always live. It comes from my gut. Every muscle and every bone and every blink of my eye desperate to just look like everyone else again.
.
And I thought I was beyond such things. I thought I was a warrior, a goddess.
.
But I’m not. Not right now. Not right this second.
.
Because right now I am naked. And in pain. And tired.
.
And I want to wear a sign that says, “I have CANCER so you can STOP STARING NOW!”.
.
And I want to hide in my room, in my bed, and just be invisible to the outside world. Because now I’m the person I used to pity. And I’m not sure if I’m angrier at myself for caring NOW, or for pitying people like me back THEN.
.
I don’t want to be pitied. I just want to be invisible. I just want to be well. I want to not be afraid. Because I am afraid. I’m afraid of my body. I’m afraid of the medicine. I’m afraid of the Cancer and I am afraid that for the rest of my life I’m going to live in a state of quiet fear that even though I beat it once- it could still come back and beat me.
.
So now I’m naked.
.
And all I want to be is invisible.
Tuesday, October 2, 2012
Wake Me Up
I am so freaking stressed out.
.
I’m still sick. So I have no idea what to expect on Thursday. I can’t imagine her delaying my next treatment ANOTHER week, but still… .
.
Plus, guess what, cell phone and car insurance bills are due, but I don’t have it. So, I’ll have to either call tomorrow (I just got up, don’t ask) and see if I can get them both to give me another couple of weeks (again), or ask Kris to pay them. AGAIN. Which you know, she doesn’t have enough on her plate either.
.
I’m supposed to do this craft fair with my Aunt on the 13th. I said I’d bring jewelry and photos. I haven’t gone through my existing stock of photos yet, but I know I don’t have enough to take. To say nothing of having 0 Mats to put on them. Thinking of just mounting them on cardstock (which I have) with small edges, then they’re still thin enough for people to take home and frame themselves, but saves me having to buy mats, and stiffens them just slightly. Is that too cheesy? I mean, it’s just an elementary school craft fair.
.
PLUS I was going to try and make some necklaces that are kid-sized and kid friendly but I’m so not motivated to do that. Honestly. What size do I even make that shit?
.
But the real root of it all, is that I’m tired. I’m tired of being sick, I’m tired of being tired, I’m tired of being bald, and being inside, and even if I wasn’t sick and sickly, I don’t want to go anywhere because I’m already tired of being fucking stared at wearing my scarf and a goddamn mask everywhere. I haven’t left the house since last Thursday. And I keep telling myself it’s because I’m sick and the Dr. doesn’t WANT me out and about… but the real truth is- that’s never stopped me before. Kris keeps saying, “just come to dinner.” But I don’t want to. I don’t want to get stared at anymore.
.
I am struggling so much right now, financially, emotionally, physically. I just feel completely not myself and I hate it. I am so much stronger than this. My confidence is just… shot. And I am so tired of not being able to support myself financially- I’m pissed that my supplemental insurance claims were BOTH denied. I just.
.
And everyone says, oh go talk to SuperTherapist. Except what can she tell me? It’s all temporary. I’ll beat Cancer, I’ll find a job, I’ll go back to the way things were (sort of). And it will all go back to normalish. I know it will. This depression, this anxiety, this pain is all temporary. I don’t need a therapist to tell me that.
.
But that doesn’t make it any easier to handle now. Plus, I’d have to go see her and not pay. Again. And quite frankly I can’t handle one more “favor” from someone I know. It’s going to be hard enough to ask Kris to pay my 2 piddling little bills. AGAIN. Again again again.
.
I know it’s not my fault, and I know it’s not a bad thing to need other people. But I spent YEARS and YEARS figuring out how to support MYSELF. It feels like failure to need other people so much for so many things.
.
I’d rather pay for things with donations, except of course no one has anything to donate anymore.
.
I just want to crawl into bed and wake up when this is all over. And it’s been a long time since I felt that way about my life.
.
I’m still sick. So I have no idea what to expect on Thursday. I can’t imagine her delaying my next treatment ANOTHER week, but still… .
.
Plus, guess what, cell phone and car insurance bills are due, but I don’t have it. So, I’ll have to either call tomorrow (I just got up, don’t ask) and see if I can get them both to give me another couple of weeks (again), or ask Kris to pay them. AGAIN. Which you know, she doesn’t have enough on her plate either.
.
I’m supposed to do this craft fair with my Aunt on the 13th. I said I’d bring jewelry and photos. I haven’t gone through my existing stock of photos yet, but I know I don’t have enough to take. To say nothing of having 0 Mats to put on them. Thinking of just mounting them on cardstock (which I have) with small edges, then they’re still thin enough for people to take home and frame themselves, but saves me having to buy mats, and stiffens them just slightly. Is that too cheesy? I mean, it’s just an elementary school craft fair.
.
PLUS I was going to try and make some necklaces that are kid-sized and kid friendly but I’m so not motivated to do that. Honestly. What size do I even make that shit?
.
But the real root of it all, is that I’m tired. I’m tired of being sick, I’m tired of being tired, I’m tired of being bald, and being inside, and even if I wasn’t sick and sickly, I don’t want to go anywhere because I’m already tired of being fucking stared at wearing my scarf and a goddamn mask everywhere. I haven’t left the house since last Thursday. And I keep telling myself it’s because I’m sick and the Dr. doesn’t WANT me out and about… but the real truth is- that’s never stopped me before. Kris keeps saying, “just come to dinner.” But I don’t want to. I don’t want to get stared at anymore.
.
I am struggling so much right now, financially, emotionally, physically. I just feel completely not myself and I hate it. I am so much stronger than this. My confidence is just… shot. And I am so tired of not being able to support myself financially- I’m pissed that my supplemental insurance claims were BOTH denied. I just.
.
And everyone says, oh go talk to SuperTherapist. Except what can she tell me? It’s all temporary. I’ll beat Cancer, I’ll find a job, I’ll go back to the way things were (sort of). And it will all go back to normalish. I know it will. This depression, this anxiety, this pain is all temporary. I don’t need a therapist to tell me that.
.
But that doesn’t make it any easier to handle now. Plus, I’d have to go see her and not pay. Again. And quite frankly I can’t handle one more “favor” from someone I know. It’s going to be hard enough to ask Kris to pay my 2 piddling little bills. AGAIN. Again again again.
.
I know it’s not my fault, and I know it’s not a bad thing to need other people. But I spent YEARS and YEARS figuring out how to support MYSELF. It feels like failure to need other people so much for so many things.
.
I’d rather pay for things with donations, except of course no one has anything to donate anymore.
.
I just want to crawl into bed and wake up when this is all over. And it’s been a long time since I felt that way about my life.
Monday, October 1, 2012
Pinktober Hits Comics
.
For a whole fucking month.
.
I was a lot less angry about Komen and Pink Ribbons before I got Uterine Cancer. Because it took getting some other Cancer for me to realize just how invisible anything but Breast Cancer really is.
.
Instead of giving into corporate marketing greed (which is what this really is), donate directly to the Cancer Society. Or help out someone you know who has Cancer.
.
I can’t wait till October’s over. Then we can go back to ignoring women’s Cancer issues completely like we do the rest of the fucking year. You know.. unless you actually HAVE Cancer. Then you can just get ignored.
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