First, the Good Stuff

Good Stuff First, I suppose:

       We're midway through June now, and it's safe to say that the drug trial I participated in did in fact work.  Safer to say I must have gotten the actual drug and not a placebo as well.
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       The trial, meant to deal with the debilitating neuropathy that plagued me post-chemo, involved 4 days of twice daily injections after weeks of lead-up and prep.  On the 3rd day, when I'd given up on either getting the real drug, or of it working if I had- I had a sudden shift between the first and second injection that day.
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     The change was almost miraculous, I went from weeks of being at a 9 on a pain scale, from a 10 that morning... to a 5- in a matter of 4 hours or so.  And it was absolutely revolutionary.  Ever since my last round of chemo, my pain had been progressively getting worse.  I was using a cane to walk.  And by the time the trial started- I'd reached a point where I couldn't use my camera- the numbness and pain in my fingers was so bad that it was difficult (sometimes impossible) to even depress the shutter.
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     And then the trial happened.  And my day 3 miracle, and suddenly... it was a weight lifted from my body.  And over the next few days- the pain went from a 5 to a 3, to a 2, to ... well... negligible.
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     And for nearly 2 months that's been the state of affairs.   A few weeks ago, I started to have the discomfort return to my feet at nights (with pain when a particularly bad storm comes through), and numbness in my fingers/hands (the most worrying thing to me to be honest).   But so far, it's not been bad enough to warrant reporting.  I changed some things in my schedule, cancelled an event I'd booked to photograph just in case.  And Monday, I think I'll probably reach out and see about getting a pain pill refill for when the nights get bad.
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      But for the most part- it's been an almost blissful 2 months.  Remarkable really.  I'm hopeful that by the time I need a "booster" of the trial drug that it will be available to me.  They've assured me that it will.  2 Months is about the limit of their "typical" potency.  And in a week I'll be right exactly at the 2month mark.
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     So that's the good news.   In addition to my restored (for the time being) mobility, I've felt better than I had in years.  I forget sometimes how long I was really sick for.  For more than a year before my Cancer diagnosis- I was symptomatic.  It started with exhaustion, being run down, losing energy.  Then the uterine symptoms.  The pain, the cramping, the bleeding, the clotting.
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    I've felt great, I've been able to do a ton of work on the house, something I've wanted to be able to do for a long time.  Something that has become something of a gift to Kris too, as I know she's felt kind of overwhelmed at where to begin with the house overhaul.
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     And now... for the heavier stuff.
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     There is something very surreal about being a Cancer Survivor (intentional capitals).  For one thing, there's just the thing itself: Cancer.  I had Cancer.  I survived Cancer.  I had Cancer.  It's such a strange thing to say, to accept.  I had Cancer.  You think the more you say it, the less odd it would feel, but that's not the case.  I'm officially 6 months into remission now.  I've had one check and everything looks good still.  I imagine I'll be due for another CT check any week now.  I am in remission.  And that's a good thing.
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     But it never goes away.  At least, it hasn't yet.  Any ache, any pain, any bruise, any moment of exhaustion and my first thought- always- is... did it come back?  What if it comes back?  Will I know?  Will they catch it?
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     It's a big weight to carry around.  And I don't know if that ever goes away.  I have to assume that it does.  It seems a bit ridiculous to hold that in my spirit for the rest of my life.   But right now... I don't know.  There's a strangely fluid disconnect between then and now.
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     Because there is a piece of me that is still so strongly connected to that time.  All of it, the physical, and the emotional.  The fear, the pain, the uncertainty.  It's better, now that we have (for the moment) the post-chemo neuropathy squared away (mostly).  But it's so strange still.
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    I had Cancer.
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    I'm 31 years old and I had Cancer.

Portfolio

For my Photo I class, our final "project" is to create a portfolio of 10 images.  We had to give him several ideas of what we want to do and I have 4 different ideas really.


But the one I'm hoping he ultimately approves, and the one I'll be working through anyway is to revisit a project I did several years ago called DearMe.

At a time in my life when I was having trouble... loving myself- I did a daily photography project to try and ... fix that.  Every day for 6 months I wrote something positive to myself on my hand, added a sticker or picture or embellishment... photographed it, edited it and journaled about it.  It was immensely helpful and incredibly therapeutic.

When I was trying to decide what I wanted to do for this portfolio, I thought about revisiting that project.  I also thought about how I'd wanted to add to it during my Cancer Journey.  It occurred to me that I could use the same format- but instead of positive messages, or letters to myself- I could use it as a way to document some of the writing I did here.

So I started working, and digging through my old box of embellishments.  I weeded through this blog, pulled out entries I wanted to highlight.

So far I have 11 finished images (one will actually be redone today probably because it didn't come out exactly the way I wanted it to).  Most of the time the text is quoted directly from the entry (the date of which I print on my thumb for each photo)- but sometimes it's a paraphrase, or one line that summarizes the emotion of the piece.

Either way, it's turned into an incredibly moving and personal way to illustrate the last year of my life.  The first 6 images can be seen below... and I'll add more each time I finish up a set of them.
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These are not the only images I'll use.  I'll likely go back and fill in other dates in between as well- but these were the ones that jumped out at me when I was doing the initial planning for the project.

Postponed

We were about 5 minutes away when my phone rang.  The liason told me the system wouldn’t let them randomize me.  Most likely because I missed too many pain score call-ins.  They need another couple of days of solid data in order to start the injections.

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I’m going to have to set alarms to do the phone ins I guess.  The only reason I kept missing them was because I was in so much pain I wasn’t paying attention to the clock.  Or I’d remember but not at the right time, and then I’d forget when it WAS time.

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I’m … I’m pretty devastated.  My hands are in enough pain that I can’t even really hold my camera.  I’m frustrated and disappointed and trying really hard not to sink into a place where I hate myself because really… it’s pretty much my fault that this isn’t happening right now.

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I don’t know how to manage this pain for another week.  I just don’t.  I’m so tired.

Schedule

Ok schedule will be:
Injection 1: 730am
Wait 1 hour
Go home
Injection 2: 330pm
Wait 1 hour
Go home.
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Lather, rinse, repeat TWThF.
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Fingers crossed.

Pre-Trial Check

Final pre-trial check went well (I think I said that).  And it’s good that injections start on Tuesday because the pain is officially in my hands.  It’s getting harder and harder to hold small things (like a pen, even my phone is a little tricky right now).

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I’m switching to the uncollapsable cane because the handle is wider and padded and it’s too painful to wrap my fingers/hand around the handle of my switch stick one.  

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Pain is kind of through the roof and it’s exhausting.  Came home from lunch after the appointment and zonked out for several hours (I just woke up about 15 minutes ago). 

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We’re going to go get dinner, but then I’ll probably spend a good portion of the rest of the weekend in bed.  I’m completely exhausted.  Need this to happen soon.. and to work.

Flare

Having a major flare. Woke up, called in a 9 for my pain score but now its even worse… Hands are hurting badly too. I know part of it is the weather changing again but omg. I’m in tears.
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If I wasnt going to miss both sessions of this class next week I’d probably skip today.
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Going back to bed for a bit and hoping this gets less extreme by the time I have to be up.

Dare to Hope

Sometimes when I think about how next week (the 9th) I start injections… and how they’re supposed to work… and work for up to a month (sometimes 2)… I start to get hopeful.

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I start to remember what it was like to have free use of my own body.  What it was like to take off to the lake at sunset and walk around until the sun went down.  What it was like to meander around with my camera.  

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I remember doing the Kelby Photowalk the first time, and hiking around downtown without worrying about spoons, without being distracted and driven half-mad with pain.

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I dare to hope that maybe for a short time… I might get that back.

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But I keep stopping myself from making actual plans.  Because there’s still a 20% chance of getting a placebo.  Because there’s still always a chance that even if I get the drug it might not work.

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And I’m scared about that too.  

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Because I feel like there’s a really good chance that… at least for awhile, I might actually get my life back.

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And I think maybe I’m scared that I’ll get used to it- and then it’ll all fall apart again.

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I am more afraid of that then I am of my actual cancer coming back.

Truth in Advertising

they talk about

TRUTH

in advertising

in the way

they nip and tuck

our bodies

with

a mouse

and a 

keyboard

behind

a computer

screen.

.

they talk about

TRUTH

in advertising

this weeks

celebri-tweet

pushing

vodka at 

this months

hottest bar

in this year’s

hottest city

all working

to ease their way

into your

hard

earned

wallet.

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they talk about

TRUTH

in advertising

but where was

my TRUTH

when they talked about

the big black spot

that was cancer

and their miracle

cures

and showed me 

a brochure

filled with

shiny

happy

cancer

survivors

.

they talk about

TRUTH

in advertising

but where was 

my TRUTH

when I asked

about my 

pain

and

my fear

and they

said oh yes

that happens.

.

they talk about

TRUTH

in advertising

but where was

my TRUTH

when remission

wasn’t just simple

and smooth

and shiny

like they showed me

in my brochure

.

They talk about

TRUTH

in advertising

but this isn’t

what they sold me

in my brochure

.

This isn’t

the 

TRUTH

they sold me

but the ad-man says

I should just be

happy enough

that i am simply

alive

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They talk about

TRUTH

in advertising

but sometimes

what you get

is the bait

and switch

instead.

Tiny Circles

I circle.

I walk this rotation

between hope

and temperance.

.

between daring

to believe

in something that

seems to work 

for so many

.

and the knowledge

that often

I find myself

in the fringes

.

and in a matter of 

weeks

I’ll line up

for my chance

to see

for myself.

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exchanging

the pain of

pins and needles

for the pricks

of needlepoints

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and I walk my tiny

circles

between

daring to 

hope for more

and

expecting

more

and

more

and more

of the

same

all over

again.

The Plan

Ok really bad pain day. :meep:  In addition to our usual feet in a vice, we also have burning toes for extra fun.

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BUT you are looking at the newest volunteer in the Tetrodotoxin post-chemo neuropathy dosage trial.

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Btw… that comes with a buttload of paperwork.. seriously diaries

The Orange is my Pain Medication Diary which will largely remain empty since I don’t really take any.  I mean for the next week my topa max will get recorded, but once I’m done with that, there won’t be anything else.

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The Green is for Non-Pain Meds (basically will end up recording nyquil nights)

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And the Blue is symptoms… date started, time started, ongoing yes or no etc.

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This binder also has all the consent paperwork (dude it’s a chunk), plus the schedule form, the call-in page with my subject ID and pin # for when I start calling in with my pain scores (starting on the 25th of March.

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I start weaning off the Topamax today (THANK GOD) and he said I should start getting back some of my mental acuity as I get away from it.  Halleluia.  I start calling in my pain scores on the 25th, and my treatment week is the 9th of April.  It means missing school the rest of that week.  So after break I will be going to the disabilities office so they can help me navigate it with my profs.

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The good news is that for the people who have had success with this, the effects can last for up to a month, in some cases- up to 60 days.  Pain free for up to SIXTY DAYS.  Like… just the thought of that made me tear up.  

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After the trial  there is a plan in place evidently to keep participants connected with the drug as a prescription and provide them with tools to be able to administer it at home as needed as well if it is successful for them.  Details to follow post study.

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I’m trying not to get my hopes up.  But honestly, even if it DOESN’T work, at least I feel like we’re DOING something now to try and find a solution.

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So that’s the plan for now..

On Pain and Prettiness

I don’t think I realized until today just how… unpretty my pain has made me feel. For the last few weeks, I’ve been lamenting about how my bionic shoes don’t really go with the whole… wearing dresses thing.

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Not that they’re not cute.. for sneakers. It’s just that they’re loaded with tech (roll-bar technology, extra balance assistance, etc.etc…) that helps to keep me stable when my pain and other neuropic issues would otherwise have me falling over.

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But they’re sneakers. Grey and white with purple and some pinkish accents. I can’t exactly wear them with a cocktail dress.

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Since it’s been so cold until lately it hasn’t really been something I thought about anyway. My focus has been on staying warm. And because of that I don’t think I really noticed how unpretty my pain has made me feel.

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For me prettiness was a revolution. And that revolution came in the form of a dress. First one- and then another, and another, and another. Until ¼ of my closet was dresses lined up one after another. It was a rebellion against 20 years of self-hatred and body violence that manifested in disordered eating and thought and self-injury. It was casting off the mantle of “monster” that I adopted after years of abuse. It was accepting that I had the right to be VISIBLE in the world. It was accepting that I had the right to feel and be and be seen as BEAUTIFUL. Even though the conventional beauty standards would have me believe otherwise.

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And for me- a dress was the ultimate symbol of all of that. It was the thing I had denied myself for 20 long years.

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So when I started wearing dresses it was more than a victory- it was something that made me re-evaluate even the way I identified myself within my sexuality. The way I identified my sexual presentation. I started, for the first time… to embrace the idea of being Femme. Hard femme, sure, but Femme. It stopped being such a foreign concept to me. It started to be familiar, and comfortable, and honest. And beautiful.

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The pain that comes with neuropathy though, has made me feel so unpretty. And it wasn’t really until today that I even realized how much. It’s more than just the dress wearing although that’s part of it. There’s an accessibility to the way I reach that feeling of prettiness. For me- as silly as it may seem to some- that :needs: a dress. Maybe someday I’ll be beyond that (and sometimes I do have moments). But for me, I need that flowing skirt, the long lines, the ethereal feel of it around my body.

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But with pain, especially constant pain, there comes a certain… curmudgeon-ness. Not because I’m cranky, or hopeless, or mad at the world (although I have those moments too)… but because I’m just so limited. Because my energy is limited. Because smiling and putting on a happy face takes energy that has to be saved and used elsewhere. A life-long history of self-hatred means that exuding “prettiness” (even on my own terms) takes energy… and living in constant pain means choosing with excruciating precision how that energy is used.

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I don’t feel pretty most of the time. I feel tired. I feel frustrated. I feel worn down. I feel heavy. And I’m sure that to the world around me, I look it. This week I’m sensing that more and more. I mentioned last night about how more and more I’m being offered assistance by strangers. Having doors held open. Being asked if I need help. Being asked if I’m ok. The world has noticed that I am not ok.

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And maybe that’s part of what me take notice too. I’m not passing anymore. So today when I got up and suddenly remembered that I have a dress that actually sort of matches those chunky bionic sneakers I dove for it. I pulled it from its drawer, shook it out, and put it on and the transformation was almost magical.

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It was like waking up again. And I realized just how unpretty I’ve really been feeling. Not unattractive, mind. As you can see by my fantastic fatspo coloring book page… I am plenty fabulous. Bald, fat, dapper, whatever. But PRETTY. I missed feeling pretty. I missed the ethereal, featherweight feeling of prettiness. And it’s the chronic, neverending pain that takes that from me. My pain is heavy and draining. It holds me down. I won’t say it makes me feel ugly- that’s not accurate. But it definitely makes me feel unpretty.

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When I was doing radiation and chemo, and then chemo again- I still maintained the lightness that was “pretty.” I was able to still wear my dresses. In fact I mostly wore dresses during those days. It was summer (for one thing), and sundresses/maxi dresses during radiation days made it easy to get in and out of hospital gowns for treatment. For chemo days, it meant easy access to my port and the least amount of discomfort during 6 hour days in a chair receiving chemo through iv. They were light and airy.

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It also meant that even as my body changed shape and size, as the hair on my head fell out, as my eyelashes and eyebrows disappeared… I still got up each day and stepped to my closet and chose something light and lovely and long and feminine. And I could still connect myself with the lightness that was “pretty.”

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But my pain doesn’t allow for pretty. At least, it hasn’t. It’s something I will probably struggle with for awhile. Finding a “cute” cane helps. It didn’t match my outfit today, but at least it was cute in its own right. And I may just have to accept that my shoes are not going to match all my dresses. It’s something I will have to just… get over.

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Because I miss the lightness of feeling pretty. It matters to me. That sensation. The way it made me feel- it was healthy. It was healing. The connection to that part of me- really? It helped me survive. And I think it’s important that I find a way to reconnect to that.

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So, over spring break… I’m pulling out my dresses… at least the long ones. I’ll shake them out. I’ll wash them. I’ll hang them back up in the closet. And I’ll start wearing them. People stare at me anyway. They stare at my cane and they wonder. What do I care if they judge that my shoes don’t match? Give them one more thing to wonder about. What matters is how I feel. And in a dress… in a dress I feel light, and lovely… I feel pretty.

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I need to reclaim the lightness that came from feeling “pretty.” I want to bring that lightness back. I deserve that.

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3 Month Check... Check.

btw in case you couldn’t tell, my oncology/pain mgmt nurse is in fact.. the BEST.

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And today I was super extra grateful for her because she actually listens to me and kind of.. hears the stuff I DON’T say.

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Which is why I’m now working with a social worker, and why I’m seeing the pain guy tomorrow instead of next month.

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So yeah.  Thank you Lord for Kelly.

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Also, my oncologist seemed genuinely surprised at the level of pain I’m in which was a little frustrating.  It was also frustrating to have her say that like 99% of people see the neuropathy get better and/or go away post chemo.  Because #1: i know that’s not true, and #2: that (inaccurate statistic) makes me feel WORSE not better.

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The stats are actually closer to 30-40% see post-chemo neuropathy as a long-term or semi-permanent issue. (at least from the reading and research I’ve been doing).  And it seems to be especially prevalent amongst gynecological cancer survivors for some reason.  

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In stats… that’s WELLL above the significance point.  So telling me that for 99% of people it goes away- just makes me feel worse- even though I know it’s not true.  Maybe in  your practice it’s rare, but statistically speaking that’s inaccurate.

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Also, she kept talking about exercising, which is the point at which I finally started crying and flat out said, “Dr. Kehoe- I exist at an 8.  24 hours a day, 7 days a week.  I’m not worrying about exercising.  I’m worrying about EXISTING.  I haven’t looked into a gym.  I haven’t looked into an elliptical.  I struggle to get through my DAY.”

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And I think that’s when she kind of got it finally.  It’s the only time she and I have ever really not been on the same page since I first saw her last year.  Ever.  So it was kind of frustrating.  Like I get where she’s coming from- bigger bodies do produce more estrogen (science fact), and because my Cancer was hormonal, it is in my best interest to be mindful of that.  But after years of targeted self-hatred, I have to temper that with not making my body a target again.  I don’t just sit on my ass and eat.  I eat healthfully, I don’t overeat… in truth- I’m a once or twice a day eater at this point.  Pain doesn’t exactly spur my apetite.  (And I am slowly but surely losing weight.  Not necessarily on purpose… it’s just happening.)

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But setting up a regular exercise routine isn’t my primary concern right now either.  Right now I have to figure out how to navigate my daily life without literally crumbling from the physical pain.  If we can figure out how to do that- then I would LOVE to walk more.  Or swim.  Or something.  My priority right now is physical existence.

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The only time Dr. K has ever seen me break down like that- was after my emergency D&C, so I think that sort of hit her finally just how bad things really are right now for me.  

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After we talked about it, she said she also wants to run some more extensive blood work too- just to make sure there isn’t something their missing that could be contributing to the pain.  She’s really concerned that the pain is getting WORSE.  Because it has gotten worse.  Anyone who has been seeing this progress can see that in the last few months it has been getting worse.  It seems to have leveled off in the last month, but since December when it went from mostly a night-time issue to an all the time issue, it started to get increasingly more painful.  

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So I’m glad about that, I don’t know that anything will show up there, but it’s good that she wants to be involved and be thorough.

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We’ll see.  But anyway, thanks to Kelly tomorrow I see Dr. M again, and hopefully I’ll have an idea of the actual schedule for the blowfish thing so when I go back after spring break I can talk to the disabilities office and they can help me navigate with my T/TH guy for the time off from class I’ll need etc.

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Plus, I’ll be getting connected with a psychologist at the Cancer center which I think I really need right now too.

Acupuncture Adventure

She did warn me:

it might make it worse

for a little bit

And in my head I laughed and thought

yeah, right

like there’s a worse

.

and 9 hours later

I want to rip

the skin off my bones

and cut away the muscle

and the fat

and the meat

.

until there’s nothing left

because surely

my bare empty chalk

of skeleton

would ache less

.

than what she left

when she pulled

those pins

from out of my

wounded

weary

flesh

.

if only it was worth

those 15 measly 

minutes

of soft

silky

sultry

almost

pain

free

steps

back

to the way

things are

now.

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She warned me.

Switch Stick

New cane arrived today.

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Having an in-home day so haven’t used it yet, but it’s very pretty and snaps together and collapses easily.  

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It really does fold down fairly small (into 4 bits) and should fit in the upper part of my aero pack (the backpack style camera bag) when I’m in class or out at restaurants or movies etc.

Cane in Hand

Been doing a lot of thinking today.  Lots of pain this weekend.  It’s getting worse instead of better.  It’s not a consistent downfall which is probably good, but there’s definitely not an improvement.  I haven’t called the acupuncturist yet- blame that on the social anxiety.  

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Went to the lake today to try and get the shots I wanted for my nature assignment which had to be uploaded by midnight (got them, and will post them here later)  This is the second time I’ve been down the lake since I finished chemo and even though there is still a lot of magic about it for me- it made me realize something today that I really didn’t want to.

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I need help.  

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Next to me, propped on the desk and leaning… is my new cane.

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My pain is getting worse and as it does- my mobility gets worse as well.  It gets  harder and harder for me to get to and from class, to and from stores, to and from… anywhere.  The lake was the big wake up call for me.  When I went out— last week? Week before?  First, I nearly fell off the pier.  The wind was high and I could barely keep my footing.  I left without getting the pictures I wanted.  I tried at another spot.  I got photos I needed for a different assignment- by sitting on the grass.  But as I tried to get up- I fell.  My feet went numb as I tried to get up and I bashed my knee.

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Today, I got my photos.   But I got them while clinging to a post.  I got them and barely made it back to the car.  Spent the rest of the day in even more pain.  Enough pain that when we went to the grocery store I actually did use one of the scooter carts- by choice.  

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I asked Kris if she still had any of her dad’s canes.  After we stopped at home and put up the groceries she went to her folks to tend to the birds, get the mail and all that- she came back with a new cane.  She stopped at CVS and got me my own.  It’s posh.  comfy handle, metallic marbled blue.

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:shrug:

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I know it’s meant to make things easier.  And I know it would have made today especially easier.

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But I can’t quite wrap my head around it either.  It’s all just so weird.  

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31 years old. 

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Cancer survivor.

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Handicap Placard in the car.

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Cane in hand.