Sunday, December 30, 2012

Nights of Pain


Having a bad pain night, which hasn’t happened in awhile.  Jesus.  I kinda forgot how much that could fucking hurt.
Took a pain pill, hoping it will work.
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blargh

Monday, December 17, 2012

Waiting for the Shoe to drop...


I won’t lie,
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I’m still kind of waiting for the other shoe to drop.
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I mean, I know it’s only been a few days.  It’s going to take some getting used to.
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But it’s harder than I thought to really accept the whole… no more Cancer thing.
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No argument, it’s better than the alternative.  But yeah… I thought the relief would be… more tangible.

The thing about Nsquared...


The thing about medicating pain with Norco + Nyquil is that one of two things will happen (at least to me):
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1. I will actually wake 14 hours later after passing out cold and “sleeping” through the worst of the pain.
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OR
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2. I will stay regrettably awake but suddenly cease to care that I’m still fielding a 10 (or sometimes higher) on the pain scale.
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Right now, we’re at #2… but I’m about to crawl under the covers and hope that #1 is soon to follow.

Thursday, December 13, 2012

Welcome to Remission


As of about an hour ago, I am officially:
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CANCER FREE.
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Welcome to Remission!
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I feel like I’ve been holding my breath for 2 years and I can finally relax.  Don’t even really  have words for all the feels.
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Thank you so much everyone, who has been here supporting me for so long, for all of you who put up with my rants and tmi and bitching and moaning. 
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It’s not all over yet, I have 5 years of “surveillance” before I’m considered “cured” but as of today the official word is No More Cancer.
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Thursday, December 6, 2012

Post-Chemo CT


6:30am:
I don’t even have words for how tired I am.
I finally fell asleep sometime right before 5:30am… which is when my first alarm went off. If you count the sleeping between alarms and snoozes, I probably got a whole 20 minutes.
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shit.
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Showered, dressed, and heading out for CT scans shortly.  Planning a nice long nap when I get home.  Hopefully this time I won’t be there until 1pm.  oy.
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At least at the UT CT center, I know I’m in for a warm robe and nice staff… and one of my contrast fluid choices is “espresso” flavoring.
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So it’s not all bad right?
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ugh.

-------------------------------------------------------------------------------
10:20am:
So the good news is, since I was there at 7:30, I had drunk the barium by 8:15 and was out by 9am.
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The bad news is I am so tired I might actually throw up. :ugh:
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Home, changed into comfies and going to take a VERY long nap.

Friday, November 23, 2012

Wake Up... Break Down


Woke up and sort of… lost it.
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I don’t know if it’s just… exhaustion (I didn’t sleep very well), or just… overloaded emotions… or what.
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Started crying, can’t seem to stop really.  I am so tired of all of this.  I’m tired of being in pain, I’m tired of being uncomfortable, I’m tired of being exhausted, I’m tired of being stuck, I’m tired of being so limited.
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I know that I should just… be grateful.  My Cancer crap is almost over.  But more and more I just seem to feel like… I don’t know-  I guess like all the emotional reserves I’ve been dealing from through all of this are just dried up finally.
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I feel weak, and tired, and used up.  I’m physically uncomfortable, I’m emotionally drained.
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And there isn’t really anything to be done about it, except to keep going and let myself recover.  But I am so done.  Every time my pain starts I just want to quit.  But there’s nothing TO quit.  All of me is just so so tired.  Physically, emotionally, in every way- I’m tired.
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I did a lot of … “powering through” this year.  I think a lot of people (myself included) expected a lot more… breakdown as we moved through all of this, but I managed not to.  At some point though, the well of emotional toughness runs dry and I think maybe I’m just there finally.  I don’t really know what to do about it.  Part of me thinks the best thing is just to sleep as much as possible.  Which is a challenge anyway because sleep has never been my strong suit really.  I have a hard time falling asleep, and almost as hard a time staying asleep once I do.
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Sleeping pills and medications haven’t really worked well for me typically, except (lately) for Nyquil now and then.  And aside from night before last when I literally passed out cold from being in so much pain: I don’t really rest well either.  And not for lack of desire or trying either.
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I don’t really know what to do, except hope that I cry myself back to sleep right now?  Hope that I can zonk out enough to get enough rest to feel better later, or tomorrow, or next week. 
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I’m just so tired of having my body in breakdown and of feeling constantly on the edge of emotional breakdown too.
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So.. what to do?
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I guess I climb back into bed, cover up, and hope I fall back to sleep and wake up feeling better.  There’s not really much else TO do.
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Eventually I’ll feel better.  I just will, it’s the nature of all of this shit. 
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I just wish eventually was a little bit closer to now.

Thursday, November 22, 2012

Thanksgiving


I think I may have actually passed out from pain last night.  Seriously. 
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Bone pain in my legs somehow exploded… on the 1-10 scale… I think I was closest to about a 12 when I literally… lost consciousness.
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The good news is, because of it, I got really solid rest for once.
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The bad news is, although my pain is better, it’s still pretty bad.
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Going to get up, get dressed… pack a bag just in case- and then head to my mom’s for thanksgiving.  I have a feeling it’s going to be a lot of me asleep on her couch today… but I miss them. 
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I’m so ready for my body to go back to normal.  I’m tired of being in pain.

Wednesday, November 21, 2012

No Babies...

      In all of this Cancer nonsense, sometimes it's easy to sort of ... forget some of the permanent ramifications of everything I've dealt with.  Physically speaking.

       The thing is, even before Cancer, I had sort of come to terms with the fact that kids probably weren't in my future.  I'm single, an abuse survivor, a lesbian, no real prospects hanging around.  I started to realize that even if I did find and fall in love with the right girl... by the time we got to the whole... having kids part- my bits would probably be pretty well expired.

   Since I'd always had really complicated, difficult, and unpleasant female issues growing up, in the year before Cancer, I'd started to seriously consider seeking out at least a partial hysterectomy anyway.

    But back then, I could still change my mind.  I could still pick up one day and say... no... babies.. I want babies.  For a lot of years that was on my list of things I wanted to do- and pretty high on the list in fact.  To the point that when I talked with my best friend about the hysterectomy decision ... we had a conversation of more than an hour where I had to convince her that I really had changed my mind.

    The thing is, Cancer takes away your choice.  I think sometimes the only reason I have any residual emotional waves about not being able to bear children is BECAUSE Cancer took away the choice.  If I'd done the hysterectomy (partial or otherwise) 100% by choice, I don't think I'd have that (albeit small) internal conflict about it.  Because there's just something about... choice.  About it being a decision made freely.

   Ultimately, I didn't get to make that decision freely- it was made for me.  The value of my life and healing over the desire to carry babies.  I chose life.  I don't regret that, and I never will.

   But the point of all this isn't to talk about whether or not my hysterectomy was a choice.  Or whether or not I sometimes still wish I had the option to carry a baby.  The point is about a conversation I had today... with a nurse of all people.

   I had my first PT appointment today and thanks to a small service expansion there's now a chemo/cancer focused PT section at my Cancer center.  Please note the redundant use of the word Cancer.  The PT group is FOR Cancer patients.  That's the whole point of its existence.  It's there to serve the Cancer patients.

   As is typical with a first appointment, you have to go through the same 50 questions with the nurse before you get to see the Doctor.  And it started typically enough:

Nurse: "And where are you experiencing pain?"
Me: "Legs, feet, numbness, some in my hands and arms today too"
 Nurse: "Weight?"
 Me: "#"
 Nurse: "Height?"
 Me: "#"
 Nurse: "Date of last period?"
 Me: "I don't really know."
 Nurse: "Closest guess?"
 Me: "I've had a hysterectomy."
 Nurse: "No Babies?!"
 Me: "Um... what?"
 Nurse: "No babies?!?"
 Me: "No.  No babies."
 Nurse: "Why no babies?!"
 Me: "Cancer doesn't want me to have babies."
Nurse: "Ok, do you have a guess about your last period?"
Me: "I have no idea, before the surgery I pretty much had it all the time"
Nurse: "That's too bad... and no babies too."'

     That was the conversation.   And she's lucky.  Because my emotional attachment to the baby thing is pretty minimal.  But it still... rankles.  I don't necessarily want to be reminded that I can't change my mind, that the choice of having my own biological babies is no longer mine.  And I really, REALLY  didn't appreciate the implication that not being able to have babies (for whatever reason) makes my life less rich or less positive, or less worthwhile.  And while I know she probably meant well... that was the certainly the tenor of her reaction.

      She's lucky.  Because if I were someone who felt the real and genuine loss of that avenue, the way many women with Uterine Cancer do, she could have really created some emotional wreckage today. 

    At the best, she was incredibly insensitive.  And at the worst, she could have really added to the emotional damage of a woman who might already have been fragile to begin with. 

   I think the thing that boggles my mind the most out of it all is that it happened at the CANCER CENTER.  The woman is a nurse who works with CANCER PATIENTS.  My situation should not have been shocking to her.  It shouldn't have been a surprise and it should NOT have warranted or elicited the reaction from her that it did. 

    I'll be ok.  I'll re-center, re-adjust, and move on.  But to those in the world that still think having children is the end all be all, to those that still think that being a woman and bearing children is the thing that gives life the ultimate meaning:

  It's not.  Whether by choice or not, my life is not going to be lacking or lackluster because I don't have children.  And it will never, ever be appropriate to insinuate otherwise.   The nurse should have known better- but you never do.  Don't push a woman who says she's had a hysterectomy, or who says she's not having, or doesn't want to have children.  Realize that sometimes, that's not a choice.  And respect that even if it was her choice- it's none of your business.

Moving Forward

I've decided my goal for the rest of this week (aside from survive my first PT session on Weds, and get through my first Celebratory Turkey Day post Chemo), is to unclutter my space. 

      I cleaned a bunch tonight on a whim. Tomorrow I pull everything out of the closet and either donate it, or organize it better. Then, the corner where Lucy's kennel used to be. Then the bookcase, and desk area. 

       I want to start LIVING in my space again instead of just... kind of... existing in it. I need to do this. It will probably take most of the week, but I think it's the first really major emotional/physical thing I can do to start taking back some of the control I lost to all this Cancer crap. Time to start taking my life back.
     
:-----:------:------:-----:------:------:------:------:

      So, I definitely overdid it today.  But I got so much accomplished and I already feel better... emotionally.  There is something really healing about purging this way.  About making concrete decisions about what stays and what goes and why.

      I got rid of some mementos- I won't lie.  The kind of thing my amom would have KILLED me for not keeping.  But if Cancer has given me one thing... it's this opportunity to stop looking backwards.  More than that, the gift of starting someplace completely fresh.

      In this year, I've lost my health, my job, some friends, financial stability, confidence, control.

      I stand at the cusp of being... finished and can see something greater.  I wouldn't have wanted to do it this way- but I have this blank page in front of me right now and I want to use it. Cancer isn't exactly the way I'd recommend wiping the slate clean- but it will work.

     It'll take time to build back.  Money too.  I paid the first batch of my medical bills this week- which was surprisingly empowering actually.  Thanks to continued donations (trickling in as they may be), I may come out of this without too much financial damage I hope.  And if I can just get the art/jewelry selling rolling well enough- maybe I'll even have a chance to sort of... live my dreams too.

    The point though, harkening back to the whole cleaning thing, is that I have this time, and this opportunity to really... start Living again.

     The thing is, I call this blog "The Year that Cancer Stole," but in all honesty it's more like 2 years.  At least.  It's hard for me these days to think back to a time when I felt... good.  Normal.  Healthy.  At least physically.  I did all this really intense work and got my emotional and mental health really well tidied... and then my body just... flipped out. 

   In 2010 I think is when it all started to go wacky.  2 years.  I don't even remember how it started.  I just remember being so tired all of a sudden.  And I chalked it up to work.  My job was super demanding, one of those 24/7 things that I got so invested in that it really took over my life.  I thought it was just that.  Me letting my job carry me away. 

   I don't think it was all that anymore.  Partly, no doubt.  But I think part of it was my body breaking down.  And then the pain started, and kept coming.  Most of 2011 is just a blur of pain.  :shrug:  And here we are- almost 2013.  And it's almost over.

   My life for the last two years.  A body breakdown. 

   It's time for recovery.  I have the tools to handle the emotional parts (mostly I think)... and one of those tools is to... "unfuck my habitat" as they say here in cyberspace.  (pardon the language).  So that's what I've been doing today.

    Tomorrow (or maybe Friday) I'll continue.  I have at least one other spot in the room I really want to declutter. 

    And then of course, Thursday is Thanksgiving.  It'll be the first Thanksgiving in a few years now without this black cloud of physical issues.  Not that things are peachy yet.  Still have bone pain, indigestion... a little nausea here and there.  But it's the start.  I'm starting.

    And I'm grateful.  Grateful to have survived this year, the year before.  To be approaching Cancer-free status, to having even short spurts of energy where I can work on my space and my self and what I want moving forward.

  Grateful to move forward.

    It's going to be nice... to look forward.

Sunday, November 11, 2012

Neropathy

My first round of chemo was really more about the radiation.  The chemo in July was just what they call a "booster."  It's not super powerful, it's used with the radiation to make that treatment work better.
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My big issue with my first round of treatment was definitely the stomach issues.  Nausea, inability to keep food in my stomach, complete lack of appetite.  It was draining, the radiation 5 days a week in the middle of the day in the middle of a super-hot summer.
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This round of chemo is very different.

For one, the drugs are much more powerful, it's a "systemic" treatment, meaning it's designed to surge through my whole body and kill any cancer cells it finds.  It's more potent, and more damaging.
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I've gotten off pretty easy side-effect wise on this round.  For a lot of people the 2 chemo drugs I'm on completely tank their immune systems.  They are often ravaged by nausea, vomiting, drastic changes in their taste buds.
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My big issue with this round is the Neuropathy.  It's been mostly in my feet (at least the numbness has been), my legs (pain), and my forearms (pain).  Tonight, the numbness and stiffness started creeping into my hands.
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And I'll be honest, I freaked out a little bit.  It's been frustrating enough to deal with the numbness in my feet, and the pain in my legs.  I'm on gabapentin, which seems to work most of the time to a certain degree.  But for some reason, tonight it's just not really cutting it.  So I'm in pain.  My feet sort of cycle between various stages of numbness and pain, my ankes, shins, forearms- deep shooting bone pain.
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And now, as an added bonus, there is a numbness, and bone pain creeping into my hands... mostly  my left- but really in both.
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So, I lost it a little bit.  Had a good cry.  Got frustrated.  Took a 3rd Gabapentin.  And now I'm trying to sleep.  It might be one of those nights that needs nyquil.  Sometimes the best option is just to try and sleep through the worst of it.
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Less than a week to my next (and last) chemo treatment.  Then it's a few more weeks of side-effects and then... hopefully I'll be Cancer Free.... and side-effect free... neuropathy free.  And in the meantime...
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Well, some nights you just have to have a little fit, and then do your best to sleep through the worst.

Monday, October 29, 2012

Nausea

I got lucky the last 2 cycles of Chemo and had a lot fewer issues with nauseas then I did on my first overall round.  I still think a lot of the stomach conflict in July was more from the Radiation than the Chemo, but the ultimate point is that thus far, i've been able to maintain my appetite and stomach issues much better this time than last.

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Until THIS cycle.

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I have not be un-nauseated for more than 5 minutes since treatment on Thursday.  I've been taking the nausea meds religiously accordingly, but no dice.  I've managed to eat anyway although it's been decidedly unpleasant.  Today, I pretty much gave up and stayed in bed.  Sore, uncomfortable, and nauseated- why bother right?

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So I finally rolled up and took stock (yet again) of my physical state.  And at 3:45 I realized that for the first time in days... I AM NOT NAUSEATED!
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HALLELUIAH!!!!

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So in the terms of the fabulous hyperbole and a half webcomic:  :EAT ALL THE THINGS!:

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OMG I am so hungry.

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I'm relatively sure this is a temporary condition so I will be eating quickly and quite a bit while I can.

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But oh lord it is so incredibly lovely to not be nauseated!!

Saturday, October 27, 2012

All About Me... sort of

There is a brief article up via the Dallas Morning New's "Neighbors Go" online column thanks to the amazing Mike McGee.
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He interviewed Kris and I about internet fundraising and my Cancer fight etc.  The Neighbors Go segment is pretty limited, but he's working on a larger piece for some national outlets as well.
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In the meantime here is his actually kind of cute photo:

And the article can be read here:

Neighbors Go!

My Body Can be Trusted

The first couple of days post-chemo are always sort of... a guessing game.
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Which side effects will show up this time?  Funky sense of taste?  Nausea? Pain?
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On the pain front at this point it's really more of a when than an if- but in a good turn, the gabapentin has made a HUGE difference.  I took it this morning when I first woke up and had no pain at all today- first time in weeks.  Amazing.

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So far, nausea is making a solid appearance this round- it was noticeably absent the last 2 cycles so this was a bit of an unpleasant surprise.  It's not so much the nausea itself as it is that it always seems to go hand in hand with extreme hunger.  Two very contrary physical states.  Frustrating at best.

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I did manage to eat a few times today.  My appetite overall seems to e returning in general.  Even with all the walking I did last week, and the influx of veggies in my diet- I gained 9 pounds since my last cycle.

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As a chronically fat girl, I'm almost ashamed to say that set me back a little bit emotionally.  I've mentioned here before the struggles I've had with self-esteem, with body image.  About how much work I did mentally and emotionally to get to a place of peace with my body pre-Cancer.

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I stopped placing any intrinsic value on the nubmers on my scale a long time ago- I know that pre-Cancer, I was pretty healthy.  Good blood pressure, no blood sugar issues, good labs, good bloodwork, healthy heart.  Despite naysayers and concern trolls- my fat body was in pretty darn good shape. 

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All I had to do was accept it, learn to love it the way it was.  And I did.  But then Cancer happened.  And in the rush of illness, and surgery, and more illness, and more surgery... I stopped being able to eat real food.  I lived on pop-ice for several weeks.  Then 2 weeks of soups and protein- no carbs.  Cue post surgery and almost no appetite at all.  Radiation and a severely reduced ability to keep food IN my system even when I could eat. 

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In the process of all of it, diagnosis, surgery, recovery, treatment- over the months since all of this really began- I've lost almost 45 pounds.  And I'm not interested in congratulations- like I said, those numbers stopped meaning anything to me a looong time ago.

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The thing is, body-positivity, like so many things is a never-ending process.  And I'd be dishonest if I said that 9 pound gain-back didn't bother me a little.  Deep down, back of my mind bothered.  Looking at it logically I can see it as a good thing.  My diet has been sincerely lacking in all of this.  It's one of the first questions I get asked every time I see my Oncologist: "how's your appetite?  Are you eating enough?"   A gain means that my appetite is normalizing.  A gain means that I'm finally eating enough, or getting there.

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At the same time, gain scares me for a different reason.  Right before I was finally diagnosed- well, I guess for about the 5-6 months before my appetite exploded.  I was hungry all the time, could never get enough.  And after a major lifestyle change with regard to the food I ate- it was a big deal.  Turns out it was probably indicative of the tumors that were distending my uterus, and my abdomen by extension.

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I know, logically, that my scans came back clear.  That the treatment has worked, is working.  I know that if something was there, they would see it.  But my increased appetite, those measly 9 pounds, they still scare me.  They still remind me of when my illness was hidden, unknown. 

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I know, logically, that this is a good thing.  A sign of returning health. 

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But this is a process, as always.  So maybe it's time to go back to the work of it.  To facing myself in the mirror, to soothing myself with lotion and massage.  To remembering that they're just numbers.  To acknowledging that I have a committed, dedicated and brilliant medical team watching over me.

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So I go back.  Back to learning to accept change.  Back to learning to sit in my own space.  Back to trusting in myself, to listening to my body and yes- my appetite.  My body can be trusted.
My body can be trusted.

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My body can be trusted.

Friday, October 26, 2012

My Disease Does Not Exist for your Amusement.

This crossed my tumblr this morning and I found myself... insenced.  I talk in this space a lot about the pinkwashing of Cancer.  About how the world is so eager to wrap up our struggles and our real and ugly fights in a pretty pink bow to present to the world.
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But it never occurred to me, I've never before seen Cancer turned into a prank.  Into a spoof.  Into a trick.
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And it brought me to a point of rage that I haven't really felt in awhile.
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So this was my response.
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:-----:-----:-----:----:
Wow.  This is a whole new level of disgust and anger that I’m tapping into right now.  I just- I can’t even.
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They “tricked” people into thinking JB has leukemia?  TRICKED?  So basically, you told the world a celebrity had Cancer when he doesn’t, and then laughed it off as fans shaved their heads in “support.”
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And what about all of the non-celebrities who ACTUALLY have Cancer, who live invisible and broke and drowning in medical debt, LOSING their hair, painfully, traumatically while fighting for their lives.
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You made a stunt out of a disease that kills people.  Every day.  A disease that even when it doesn’t kill has devastating effects on individuals, families, finances, futures.  You made a stunt out of Cancer.
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And as Cancer fighter, that is not ok with me.  And the fact that JB went along with it, played into this little stunt- just tells me how truly immature and out of touch he really is.  I want an apology.  I want a big, public, genuine apology.  I want a donation to the Cancer Society.  I want JB visiting actual Cancer patients and apologizing for his little “stunt.”
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I want the world to stop pretending that Cancer is ok just because it happens so often.  Because I am tired of having my pain pinkwashed… and then coopted for “fun.”  Because Cancer isn’t fun.  And this stunt is despicable.
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So to Justin Bieber, and 4chan, and any other party who participated KNOWING that this was in fact, a trick?  Fuck you.
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You owe every single one of us an apology.  You owe it to the men and women and children who LIVE with ACTUAL CANCER and don’t have the option of “tricking” adoring fans into shaving their heads in “solidarity.”
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Sincerely,
An ACTUAL Cancer patient who is NOT amused.
:----:-----:-----:----:

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Looking through Twitters, I don't know how real those tweets from ET and Bieber are.  I don't know if they were complicit or participated and then deleted them later.  But the point is not whether or not they actually participated in the ruse.
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It is not now, nor will it ever be appropriate to coopt a deadly and destructive disease for your "fun."  


Thursday, October 25, 2012

Protection

I was thinking tonight, about how we as patients, as warriors, as fighters of this Cancer epidemic, we strive not just to care for ourselves, but to protect the people that love us.

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Kris asked me this week if she could see this blog.  In case you don't know our background (and odds are you don't), Kris is my Godmother.  Like... at my baptism, "will you support this child" godmother.  I am lucky- she takes her title more seriously than anyone I've ever met. 

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When my adopted mom passed away suddenly in 2004, we were living up in Oregon, kind of in the middle of nowhere.  I was working a just-barely-above minimum wage, dead end job, and drowning in my anxiety and depression and issues. 

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Kris and I talked all the time on the computer.  We'd gotten really close and she immediately offered me a place to live here in Texas.  I said no.  I said no for 2 years, determined to make it on my own.  But after a very serious suicide scare (mine, not hers) it became clear that staying alone and isolated in Oregon wasn't the right decision for me. 

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Initially I was going to move to Jersey- my amom's brother and his family were there and it seemed like a good place for a fresh start- completely fresh.  So, I packed up a giant van purchased last minute, called my best friend to come up and do part of the drive with me, and mapped a trip that took me through California to see my dad (with a stopover at Pride in San Fran), then through Texas to see Kris, and my birth family (whom I'd connected after my amom's passing- which is a whole 'nother story!), through Florida to see my other best friend, through South Carolina to see her family, and then... to Jersey to start over.

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But when I got here, I kind of... stuck.  After 2 weeks I decided to see if I could find a job.  I stayed with the Bio Fam, and over the course of a year, I went from retail supervisor, to potential management position, finally to an office job, and then another, and another.  I started to feel stable, to consider looking for an apartment. 

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And the job dried up.  Not slowly but suddenly- gone.  Unemployed again.  I couldn't go home and tell my family I'd failed again.  The day I left that job, I stopped at Kris' before going home and sat on her couch- in tears.  And as she had for 3 years at that point, she offered me a place to be.  A home.  Not just.. to stay until I was on my feet, but just to stay.

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In a lot of ways she's been the kind of mother my amom could never be.  Not because she didn't love me, or want me, or try her best.  But because she had limitations emotionally that Kris doesn't have.  Kris is my caretaker in every sense of the word these days.  Financially, emotionally, physically.  She is the one who fills in the little bills that I can't pay right now.  She is the shoulder that I cry on, the arm that holds me when my feet go numb in the middle of the arboretum, she is the one that looks out for me on a daily basis. 

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And even as she takes care of me, there is a big part of my emotional process that tries to protect her.  The thoughts and feelings that I put in this space are often the most raw that I deal with.  They are often the fears and pains and processes that I don't share with the people who really know and love me. I don't share them because I don't want them to necessarily see all of that roughness.  It's hard enough for ME to process, to deal with as it happens.  But it's not necessary that they feel those pains too- my loved ones have enough hurt of their own in all of this.

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When Kris asked to see this blog, I hesitated.  I explained that these were the thoughts and pains and fears that I didn't necessarily always share with her.  Which of course led to the inevitable: "but you can, you know."

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And that's what it kind of boils down to you know?  This disease, fighting this disease, is ... disturbing sometimes.  It's embarrassing, it's painful.  Sometimes it feels like the treatment is worse than the Cancer.  And family, close friends- they see a lot of it.  They hurt through a lot of it.  But there are some pains, and some fears, and some anxities that are too deep to inflict on the people that love us most.

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And maybe that's why we don't riase a bigger fuss about pinkwashing.  Maybe that's why we allow this... prettying up of Cancer.  Not because it's right, or honest- but because in it's own way- it's kind.

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I still think that we owe future patients more honesty, more realism- better preparation for what Cancer, and Cancer fighting really IS.  Not to scare them- but to prepare them.

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But maybe pinkwashing isn't about US.  Maybe pinkwashing is about the people that stand by our sides.  At least, maybe it is now.  Maybe it's about realizing that some hurts, and some fears can be protected.  And knowing that while we can't necessarily protect ourselves- we can protect the people who walk with us, at least a little.

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So until the article comes out and this site becomes public to friends and family who read it- I leave it public in the web, but relatively unseen to friends and family.  Because with this disease, with this treatment, there is so much that we can't control.

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But maybe, at least for a little while, I can control how deep those around me are hurt.  Maybe I can protect them, at least a little.  Maybe I can pinkwash the process for their sakes.  Because maybe some burdens are just too big to ask other people to carry. 

Almost Done

Well, chemo 3 of 4 is officially complete.

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Went really smoothly today, and I think they were able to drip a lot faster than before too.  It was an early day which stinks, but because everything was set so early, I got in and out of each step pretty smoothly.

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Port access was easy which is always a plus... appointment went well.  No physical exam this time (they'll do that again next time.  woo.  even after all this time- there are still.... pieces of my abused self in my head that really struggle with the physical exams).   We talked about my pain issues and I confirmed that the gabapentin (when I've taken it) has made a drastic difference in my pain levels.  She said that knowing that means she can say definitively that my pain is from the neuropathy and is caused by the paclitaxen (the chemo drug I'm actually allergic to). 

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Because it did work, she's going to increase the dosage from 1 at bedtime, to 1 3x a day.  For the next 3 days, I'll take 2 a day, then bump up to 3.  It's only 300mg dosage, and she said technically they could bump me all the way to 3 900mg pills a day if we need to.  I'm to call if 3 of 300 doesn't do enough and they'll adjust me accordingly.

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I got a lecture from her and my nurse about not calling when the drugs weren't working better sooner.  But we all knew that was coming.  The people-pleaser in me still has a hard time admitting when things aren't going according to plan, and asking for help to change it. 

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Kelly (the RN) gave me the schedule for my next session.  And in all this time, I've been still factoring Nov. 8th as my final chemo day.  Which meant that Thanksgiving week would probably hit my "good" week, side effect wise.  I've been really banking on that, emotionally speaking.  And today when Kelly handed me the schedule and I saw the date... November 15th, I realized that I forgot to account for the delayed week when I was battling the cold.  November 15th puts my "good" week... at Christmas week.

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That was a little... kick in the gut.  I've been really planning to celebrate big-time at thanksgiving.  It seemed so appropriate.  And we still will I'm sure.  Be thankful that my last session is over (presumably).   Be grateful that my tithe to Cancer was only 2 years and not more.

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I'm still holding onto session 4 being my last.  I don't know what I'll do if she decides I need more than that.  I honestly can't even fathom hearing that.  So I keep holding on.  I know that she doesn't WANT me to do more than 4 cycles.  But for some reason today, I kind of got the feeling she thinks it might be best. 

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Planning on the "best case scenario" hasn't really panned out in this whole process thus far.  I almost hate to plan for it again.  I'm putting my faith out there though.  In God, in the Universe.  If that proves to be misplaced once more... I suppose I'll cross that bridge if we come to it.

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For now, I adjust my sails.  I set my course for Christmas.  For clean CT scans and bloodwork.  For the END of my 2 year journey with Cancer.  The end of my year-long struggle post diagnosis.  I trust that I am in fact, almost done.

Before Cancer

Before Cancer, I had a plan. 

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I was plugging away at my day job, working ridiculous hours, under immense stress- but trying to find every opportunity I could to go out and shoot.  I carried my camera everywhere, always.  I'd swing by the lake after work when I got out early enough.  I'd catch sunsets on the weekends.  Go on photo walks.  I'd bring in dandelions and set up a studio on my desk.  Play with macro shots.  I'd photograph friends, give them family shoots for cheap, engagement photos for coworkers, couple shoots.

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I was determined to someday find my feet as a photographer.  I knew it wouldn't happen right away.  But I also knew that if I just. kept. shooting.  Eventually I'd end up with a body of work that was good enough and focused enough to take into galleries.  To beg for my opportunity.

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And I had a small one.  For a minute.  A friend works as a framer for a small gallery.  I showed them my work.  They commissioned a shoot of a local landmark.  And I even sold a print through them.  They have some of my work for sale- prints of the same landmark.

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I meant to shoot more, and then to go back.  To show her my new work, follow up on what was already there.

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But then the pain started.  The pain that started all of this.  I never got back to shoot the landmark again.  I never even got back to the gallery again.  Pain became my whole life.  I stopped being able to carry my camera- first because of the pain, then because of the exhuastion, then because of the frustration.

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Like everything else in my life, photography took a backseat to whatever was wrong with me.  A year later, and the only shooting I'd managed was a photowalk in October of 2011.  And while I got some really great shots from that walk, it was the only time my camera was genuinely off the shelf in months. 

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So here we are... pain + 2 years.  Almost done with Chemo to kill the Cancer that put all those dreams on the back burner.  And maybe in the last week I've overdone it.  Ok, not maybe.  I have overdone it.  Today was proof of that especially.

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But once I picked that camera back up again, once I got out and heard that click and whir, the tick of the shutter, the beep of the focus.  Once I put it to my eye and framed my world through that small rectangular box- it was like some of that ... wonder... came back to me.

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And yes, today was disappointing.  I didn't get to do or see or photograph as much as I wanted, as much as I'd intended. 

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But what I DID get.  Well-- I haven't lost it.  And that was an important moment.  An important realization.  That I am still a photographer.  I am still an artist.  I still ... SEE the world that way.  It may take time to get my full skill set back, to remember how everything works and functions.  But at the root of it all- I am still good enough.  My work is still good enough- will BE good enough to be a photographer.

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And as I sit awake, as usual the night before chemo, nervous and sleepless- it's nice to feel like those dreams were really just on pause and not put away forever.

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I can still have the future I dreamed about 2 years ago. 

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Because if I can take THESE shots:



When I'm in pain, and exhausted, and frustrated... then when this is all over- I can still do this.  And that's a realization I needed today.

Wednesday, October 24, 2012

Waiting

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.

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.

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.

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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.

Saturday, October 20, 2012

Kitten Therapy

This ^ is Rory.

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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.

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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. 

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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.

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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. 

Friday, October 19, 2012

Pink Pony Panders


ralphlauren:
Ralph Lauren Pink Pony
For 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.
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.

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.

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.

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.

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.

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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.

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The truth about Cancer, about being a Cancer patient, a Cancer Warrior… is frightening. It’s painful, and stressful, and oftentimes- humiliating.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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It’s ugly. It’s disgusting. It’s painful.

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It’s not pretty, or strong, or hopeful.

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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.

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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.

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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.

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I deserved more honesty than that.

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I’m tired of this automated response of “You’re so brave.”

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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:
"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.

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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.

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Do you want to know how I found out differently?

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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.

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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?

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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.

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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.

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You know what else it is?  Medicine.

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You know what else is Medicine?

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BIRTH. CONTROL.

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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.

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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.

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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.

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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.

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“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.

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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.

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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.

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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.

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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.

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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.

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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.”

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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).

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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.

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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.

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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.

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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.

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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.