Halfway... No, Really.

Wait time at Simmons was redonkulous today. Got there on time for once (which is good, cause next time I have to be there at 7:55am ew), and got my own room for port access which went well.

.

Still a little under the weather, but since I’ve been fever free since Sunday, most of my coughing is gone and congestion is only minimal. So, I got the all clear for treatment today.

.

After seeing Dr. K, which was something of a wait in and of itself, I was deposited back in the main waiting room at around 10:30am. At NOON, they finally called me to a treatment room :headdesk: It wasn’t until 12:15 that I was hooked up and dripping.

.

I had a lot of time to watch the world while I was waiting- well, watch the march of Cancer before me. I’m struck that each time I go to Simmons that room is busier and busier. More and more filled chairs. More hats and scarves and wigs (good and bad). I can pick out the new people now: thicker stacks of paperwork, a mix of confidence (it won’t be me, it’s not happening to me) and fear (what if it’s really bad?). Women waiting in high heeled shoes, leaning against the wall twirling their white paper wristbands. In a few more weeks, they’ll sit too. In sneakers, house-shoes, sandals. They’ll learn to conserve their energy like the rest of us.

.

But the thing that struck me most today is something that’s sort of passed through my consciousness ever since this all started. I looked around me, at the families, the couples, even those daring to appear alone for appointments and treatments and tests. Mine is inevitably the youngest face in the room. Sometimes there will be someone my age, or younger- but their wrists are empty. No white label marking them “patient.” They’re the support team, not the fighters.

.

I’m not in the part of the center where they treat the young cancers. No brave children here, or annoyed teens. No bright colors and murals. This is a sea of middle-age, late life fighters. 50s, 60s, older. And me. The girl with the 60 year old woman’s cancer. And I see the looks sometimes, as though maybe I’m lost. Or in the wrong waiting room. And they the nurse calls me. Confusion clarifies into pity. Want to feel about 2 feet tall? Get the, “you poor girl” look from a roomful of other Cancer patients.

.

And I struggle- not to be angry. Not with the people around me, but with this body. This body that betrayed me. Except it didn’t really. If you want to lay it all out- this is payback for years of self-hatred, self-loathing, self-defeat. And I know it doesn’t really work like that. But sometimes, I can almost hear my body saying, “all you had to do was learn to love me sooner.”

.

But, I’m home again. Exhausted. Treatment itself was odd, but this round seems to just BE odd. No allergic reaction this time thankfully. They pumped me full of benedryl FIRST, which made me want to jump out of my skin for about 30 minutes. I was raising my left arm and rolling my wrist compulsively for the umpteenth time when the nurse came back in and noticed. Said it’s normal with the benedryl dosage they gave me. She went to request ativan to calm me (which worked eventually).

.

At one point I did get the… lead weight on my chest feeling, but it passed and I still had no trouble breathing so I didn’t even push the button or report it. Seems like the benedryl, obnoxious as it was, did the job.

.

I got hooked up at , 12:15, and was done around 5:15 so it seems the benedryl did the trick and they didn’t have to slow the drip too much.

.

I am exhausted though. I always look worst immediately after treatment. Pale, almost jaundiced, deep set eyes surrounded by circles. I slept most of the way home, then woke up starving (another post chemo issue). We side-tracked to our favorite Chinese place (best to do it before the nausea hits and I’m reduced to ritz for a few days). By the time we were done there, I was done.

.

So, now I’m home. Blogging about chemo and Cancer and the reality of a disease that doesn’t matter because it isn’t in my boobs where it can be marketing and lauded and supported by everyone from pen-makers to porn sites.

.

My bitterness is coming out. I think that means it’s time to stop now. Blogging will probably be sporadic until late next week after the pain wave comes and goes.

Naked

I haven’t been out of the house since last Thursday. I’d say I’m getting cabin fever except… I’m kind of “content” to just hide in my bed for awhile.

.

I took a shower. A 4:30 in the morning. I needed to be clean. Confession? I haven’t showered since last Thursday either. Why bother? It’s not like I’m going anywhere. Who cares. I don’t do anything, or work up a sweat. It’s not like I have hair to keep clean.

.

Call it a full on depressive slump.

.

But I took a shower. And I realized why I’ve resisted it so much. It’s been 3 weeks (?) since my hair started falling out, since I shaved my head. I’m down to half an eyebrow over each eye… limited lashes. Pubes are going now. Not that I care about that. That’s a plus as far as I’m concerned.

.

But I realized tonight, after shaving my head stubble at the sink (surprisingly, even though all of my hair is slowly and methodically falling out of my body- my head is still sprouting stubble in the areas that hadn’t fallen out pre-shave. Nature’s fabulous fucking irony)- anyway, I realized as I turned off the shower and reached up- that I still do that: reach up. I put both hands to my head, to wring out my hair before I step onto the bathmat. Even though I haven’t had any hair to wring out for 3 weeks now. It’s like one of those muscle memory things. My arms just go- my hands just… rested on my head and then slid down, slinging water off of invisible hair that no longer exists.

.

And it bothered me. A lot. I mean, it kind of took my breath away for a minute. That realization. And even after that… when I reached for my towel- my arms moved again, unwanted, unwarranted, and the towel landed with a *pouf* covering my head and face and I drew it down, again- wringing nonexistent streams of water from my nonexistent hair. And that’s when I sat down.

.

I want to try and go out today. Just to lunch, or dinner with Kris. Just someplace local. Szechwan maybe. But I am so overwhelmed. Not by social anxiety the way I used to be- the result is the same but the feeling is different. It is anxiety. It is a desire to stay invisible. But it doesn’t come from the same place that it did back in those days. Back in the days when I couldn’t function. Back in the days when I couldn’t work, couldn’t go to the caf, couldn’t even go to classes for so many days that I had to leave college because my anxiety disorder won.

.

The result is the same but it comes from a different place in my body now. A sick place. A tired place. An angry place.

.

A place that isn’t deluded into thinking the world is staring and judging me because I’m a terrible person- but a place that KNOWS the world is staring and judging me… because I’m bald, and wearing a scarf on my head in 90* weather; because I’m wearing a surgical mask below the dark circles at my eyes. Because I look sick. And they’re wondering if I’m contagious, or pitiable… or both.

.

And I am the least invisible person in any room now. That’s what Cancer has done to me this week. This month.

.

It comes from a different place in my body. Not the headspace where my anxiety used to always live. It comes from my gut. Every muscle and every bone and every blink of my eye desperate to just look like everyone else again.

.

And I thought I was beyond such things. I thought I was a warrior, a goddess.

.

But I’m not. Not right now. Not right this second.

.

Because right now I am naked. And in pain. And tired.

.

And I want to wear a sign that says, “I have CANCER so you can STOP STARING NOW!”.

.

And I want to hide in my room, in my bed, and just be invisible to the outside world. Because now I’m the person I used to pity. And I’m not sure if I’m angrier at myself for caring NOW, or for pitying people like me back THEN.

.

I don’t want to be pitied. I just want to be invisible. I just want to be well. I want to not be afraid. Because I am afraid. I’m afraid of my body. I’m afraid of the medicine. I’m afraid of the Cancer and I am afraid that for the rest of my life I’m going to live in a state of quiet fear that even though I beat it once- it could still come back and beat me.

.

So now I’m naked.

.

And all I want to be is invisible.

Wake Me Up

I am so freaking stressed out.

.

I’m still sick. So I have no idea what to expect on Thursday. I can’t imagine her delaying my next treatment ANOTHER week, but still… .

.

Plus, guess what, cell phone and car insurance bills are due, but I don’t have it. So, I’ll have to either call tomorrow (I just got up, don’t ask) and see if I can get them both to give me another couple of weeks (again), or ask Kris to pay them. AGAIN. Which you know, she doesn’t have enough on her plate either.

.

I’m supposed to do this craft fair with my Aunt on the 13th. I said I’d bring jewelry and photos. I haven’t gone through my existing stock of photos yet, but I know I don’t have enough to take. To say nothing of having 0 Mats to put on them. Thinking of just mounting them on cardstock (which I have) with small edges, then they’re still thin enough for people to take home and frame themselves, but saves me having to buy mats, and stiffens them just slightly. Is that too cheesy? I mean, it’s just an elementary school craft fair.

.

PLUS I was going to try and make some necklaces that are kid-sized and kid friendly but I’m so not motivated to do that. Honestly. What size do I even make that shit?

.

But the real root of it all, is that I’m tired. I’m tired of being sick, I’m tired of being tired, I’m tired of being bald, and being inside, and even if I wasn’t sick and sickly, I don’t want to go anywhere because I’m already tired of being fucking stared at wearing my scarf and a goddamn mask everywhere. I haven’t left the house since last Thursday. And I keep telling myself it’s because I’m sick and the Dr. doesn’t WANT me out and about… but the real truth is- that’s never stopped me before. Kris keeps saying, “just come to dinner.” But I don’t want to. I don’t want to get stared at anymore.

.

I am struggling so much right now, financially, emotionally, physically. I just feel completely not myself and I hate it. I am so much stronger than this. My confidence is just… shot. And I am so tired of not being able to support myself financially- I’m pissed that my supplemental insurance claims were BOTH denied. I just.

.

And everyone says, oh go talk to SuperTherapist. Except what can she tell me? It’s all temporary. I’ll beat Cancer, I’ll find a job, I’ll go back to the way things were (sort of). And it will all go back to normalish. I know it will. This depression, this anxiety, this pain is all temporary. I don’t need a therapist to tell me that.

.

But that doesn’t make it any easier to handle now. Plus, I’d have to go see her and not pay. Again. And quite frankly I can’t handle one more “favor” from someone I know. It’s going to be hard enough to ask Kris to pay my 2 piddling little bills. AGAIN. Again again again.

.

I know it’s not my fault, and I know it’s not a bad thing to need other people. But I spent YEARS and YEARS figuring out how to support MYSELF. It feels like failure to need other people so much for so many things.

.

I’d rather pay for things with donations, except of course no one has anything to donate anymore.

.

I just want to crawl into bed and wake up when this is all over. And it’s been a long time since I felt that way about my life.

Pinktober Hits Comics

 

Oh Look!  It’s October, when marketing and corporations remind us that the ONLY cancer that matters is Breast Cancer.
.
For a whole fucking month.
.
I was a lot less angry about Komen and Pink Ribbons before I got Uterine Cancer.  Because it took getting some other Cancer for me to realize just how invisible anything but Breast Cancer really is.
.
Instead of giving into corporate marketing greed (which is what this really is), donate directly to the Cancer Society.  Or help out someone you know who has Cancer.
.
I can’t wait till October’s over.  Then we can go back to ignoring women’s Cancer issues completely like we do the rest of the fucking year.  You know.. unless you actually HAVE Cancer.  Then you can just get ignored.

Disappear

I am struggling emotionally right now.

.

And I know part of it is just… being stuck at home, sick, frustrated by the stall in treatment. And part of it is growing anxiety about doing the article. And part of it is just… exhaustion.

.

I’ve managed for a long long time to avoid feeling sick. My weight has helped. Because I started out bigger, the weight loss from my first round didn’t really give me that… “sick girl” look the way it would have on someone smaller. My hair didn’t fall out at all the first round, and even with my buzz cut- the look wasn’t that dramatic.

.

But in the last week. It’s more than just feeling sicker. It’s looking sick. It’s circles under my eyes, pale skin, shaven head. It’s patches starting to appear in my eyebrows, my eyelashes getting thinner. It’s wearing a scarf everywhere I go because my head gets cold, and then the rest of me does. It’s wearing a mask to avoid other people’s germs.

.

Last week, we went to our favorite Chinese place. No mask yet, just my scarfed head. And when we walked in, a whole table stared. And as we ate, a different table stared. And I thought, “this is what it’s like. This is what happens when people can just… tell that you’re sick.”

.

And in the car on the way home from the Cancer Center yesterday- mask on, eyes red, tears falling, scarf falling. Having people in other cars stare. Have them watch me as they go into the store where Kris is getting me meds.

.

I look the part now. I’m not emaciated. But it’s still obvious. I’m sick. I can’t hide from it, I can’t pretend anymore.

.

Kris asked if I wanted to go to the musicals with her next week. We’re both assuming I’ll be better by then anyway. I said no. I’d have to wear a mask. Too many people. Too many germs. I’d have to wear a scarf. I can’t even imagine trying to get into the theater. I’d run out of energy before we even lost sight of the car. To say nothing of getting in and out of seats, to and from the bathroom.

.

My life revolves around a very limited amount of physical energy. And my threshold for being stared at. And Kris, god bless her. Wants to scream at the people who stare. She’d march up and tell them all what for if I’d let her. But for the first time in a very long time, all I really want right now is to be invisible.

.

I’m sick. And I’m tired. And I’m fed up. I just want this to be over. I just want to start over. I want this year to be behind me finally. I want to erase it. For the rest of my life this will be the year I had Cancer. And I just want it to disappear.

.

I want to disappear.

Not Today

No chemo today. I should probably be relieved, but I keep crying. Postponed till next week and I’m on strict orders of sleep, soup, and fluids until then.
.
Just… Another week. I don’t want ANOTHER week between me and being done.
.
I was already super emotional because I’m tired and sick and bald and having to wear a mask and I just feel completely overwhelmed.
.
Another fucking week. I just want to be done with all of this. This was supposed to be my halfway marker.
.
Sometimes I feel like its just too much for me to handle. I just want this to be over.

Confession

Ok, confession:

I am really nervous about tomorrow’s (ok, today’s) chemo. I’ve had a cold most of the week with a low-grade fever off and on. It’s the first time I’ve been sick since… well since long before I was diagnosed, and I have no idea what the implications are for treatment tomorrow. :shrug:

.

I know she said they have precautions to take to avoid the reaction I had last time, but I’m nervous about that too. It was scary- tight chest, hot face, tingling hands…I know they said they can control it. I trust them. I do.

.

But more than that… last cycle… the side effects were pretty bad. And even though I’m prepared with painkillers this time, I just- I don’t want to be in that much pain. It’s so so bad.

.

And I’ll be honest, I am still scared. I know the CT came back clear. I know that’s a good thing. But CTs came back clear before. When there were still tumors. When there was Cancer, mus have been. I wonder (as I have many times) if I will ever not be afraid of Cancer.

.

:shrug: Chalk this up under stuff I think about 7 hours before chemo.

Halfway (Tentative)

Ok… tomorrow is chemo 2 of 4. Hopefully this is my final round (all signs point to yes) so that means I will officially be over the halfway point for this (more aggressive) round.

.

It also means my interneting will probably be limited to checking messages, checking my tag. I may be ok Friday/Saturday… but if last cycle is anything to judge by, from Sunday on I’ll pretty much be out of commission until late next week.

.

SO- if there is something you need me for specifically… either reach out to me Fri/Sat… or tag me so I can catch it in my tracked tag.

.

Otherwise… woo hoo… halfway done (almost).

Stare at This

Tell you what restaurant patrons, you want to stare at the white bitch wearing a scarf on her head? I’ll give you something to fucking stare at. Here’s my bald chemo head. Fuck you.

Love from the Web

My Heart is just…. bursting.

.

It is so bizarre to see my face on blogs that I have stalked/admired/been in awe of from a distance for so long.

.

RedefiningBodImage, UnapologeticFatty, FuckYeahHardFemme, SHYB (although in fairness I have posted there before)… I just… gesus.

.

And the messages. You guys.

.

I just made a post. After 2 days of posting my psychotic, kewpie-hair… I took some control, shaved my head and blogged about it, like I have about things in the past. And the response is… overwhelming.

.

People keep saying my story makes them cry- YOU all make ME cry. I’m completely undone tonight. I’m not anything special. I mean I am, but not because of Cancer, or because I shaved my head, or because I’m on Chemo. I’m strong. But I got strong long before I got Cancer.

.

To see people’s responses, and messages, and the frakking notes… omg. I spent a lot of years feeling alone and unseen, and for a lot of years… unseen was just the way I wanted to be.

.

But tonight I feel surrounded by ALL of you. And I am so so grateful for this unbelievable response.

.

So do me a favor… While you’re reading, and thinking, and posting, and talking about how strong I am, and how beautiful I am- remember:

SO ARE YOU.

.

If you sit at home alone, and invisible, and feeling unworthy- remember that I have been there. That I started there too. And sometimes- I visit that space again and remember what it was like. But if I can move out of that place, if I can let myself be seen, if I can seemyselfand be happy, and feel beautiful- then so can you.

.

That power is IN you, just like it was in me. You just have to see it. It’s not easy. It’s not fast. It took a lot of therapy, a lot of time, and yes, A lot of work to get to that space. But I did. And you can too.

.

I’ve said this before, but my ask box is always open. Submissions too. If you want to be anon, you can click it. If you want to not be anon but don’t want an ask published- just say so. I will answer. I’m here.

.

If you want to put me on a pedestal I’d ask you not to. But if you you need a reminder that you can get through whatever you’re going through and not just survive it but rise above it- then you use me. And remember that I believe in you, even when you don’t believe in yourself.

Afraid

So my head hurts, my throat’s been progressively scratchier all day and I’m currently sitting at 99.5*.
.
I’m thinking I may be running late on the mask-wearing front.
.
If I get to 101 I have to call my oncologist. I really hope whatever this is…. My body is still strong enough to kill it.
.
File this under things cancer has made me afriad of.

Here I Am

So… here I am.

.

Today, I shaved my head. 6 months, 1 round of Chemo, 1 round of Radiation, and 1/4 cycles into round 2 of Chemo finally robbed me of my hair. Which was, surprisingly traumatic.

.

I’ve never been a big hair person. I’ve threatened to shave my head for YEARS only to rebuffed by friends and family. So when we met with my Oncologist for the first time and we discussed the potential chemo, I actually sort of considered the hair loss to be a silver lining.

.

Before my first round of chemo, I shaved my head pro-actively. We had a big party actually. A bunch of my friends got together and we had food, and gifts, and had a celebration of defiance. It was empowering.

.

Of course, then I didn’t lose my hair after all. But after a month off of treatment, I’ve started Round 2 of 2 of Chemo. At the initial pre-treatment assessment we talked about the side-effects being a little bit different this time around. And while there were things she neglected to mention (like the body-wrenching bone pain), she did let me know that my hair would fall out this time, definitively. We were talking about how unhappy I was with the color and texture of the hair that grew back post-buzz cut. And she sort of chuckled and said, “Well, in a couple weeks that will be pretty much wiped clean.”

.

I didn’t realize how literal that would end up being. Yesterday was 2 weeks to the day from Treatment #1 and on Monday the first few strands started to come out. Tuesday, more, thicker. By Wednesday I was starting to look a bit bizarre. I started wearing scarves and hats. By the end of the day Thursday- I looked like a neglected, possessed kewpie-doll.

.

I had no idea how traumatic the process of losing my hair was going to be. I knew it would be hard. But I’ve never been a hair person. Never been that caught up with my appearance. I just— I didn’t think it would matter that much.

.

But there is something so real, so vivid, so painful about watching fistfulls of hair come away from your head. To watch a small bald spot become a large bald patch. To leave behind a trail of hair as you walk through the house. I didn’t realize. Fortunately, I have a dear friend who is also my hairdresser. And another who let us borrow her house.

.

Lisa buzzed out the rest of my hair, and Stacey sat and watched and distracted me. There was calming music, aromatherapy incense and lots of love. There were tears on the initial reveal, it was hard to let people see what was there. Or what wasn’t as the case may be. I didn’t even show Kris- and we live in the same house. They are the only 2 people who saw that… hair-losing-phase in person.

.

When I got home, I took my razor and finished the job, leaving my head smooth and soft. And surprisingly- it actually looks pretty good.

.

I think there are a few reasons why this has been so hard to deal with. One is that the hair loss is such an universal and obvious sign that I’m sick, that I have Cancer. It’s this sight that tells the world- This girl has Cancer. And that’s hard. My size has actually made me a little lucky in that respect. I have (up to this point) looked incredibly healthy. Strong. People tell me that all the time. And that’s helped in a way- to keep me from sort of… sinking into all of this the way I otherwise could have.

.

But to be fair, and to be honest, there is more to it than that. I spent 20 years hating the way I looked. Feeling Ugly, unlovable, unattractive, unwantable. And there were a lot of issues that went into that assessment- but in the last 2 years I did so much work to change all of that. Not to change my looks- but to change my FEELINGS. To finally realize that I was beautiful just the way I was. And the truth is, this whole Cancer process has put a little bit of a dent in all of that. My body is changing, constantly, sometimes drastically. I face this sort of- readjustment period every time I look in a mirror- learning my new shape, my new condition, my new look. Over and over.

.

And for whatever reason- seeing myself in a patchwork of hair and skin— seeing this so-obvious sign of illness, was finally, once and for all— too much. For the first time in more than 2 years, I felt ugly again.

.

So today, I came home from Stacey’s and finished my head shaving at home, carefully running the palm of my hand back and forth, following with the razor when I ran in to small pockets of rough hair. And less than 20 minutes later, baby smooth… soft… pale.

.

And you can still see a difference. Patches of darker scalp where I still had hair- follicles left behind giving shadow to my otherwise empty head. But I can handle that. So, I showered off the loose hair, showered off the trauma and meloncholy of the last few days and dressed. I chose a necklace (one of my own making of course- why miss a marketing opportunity right?), and sat in front of the computer, photoboothing until I had 4 shots that I didn’t just… not hate, but that I actually liked.

.

For the first time all week, I can look myself in the eye again. And here I am. Bald. But still beautiful. Not that I wasn’t still beautiful yesterday or the day before. Not that I wasn’t beautiful the whole time. I was. But I don’t necessarily think it’s the “look” of my shaved head that made things better. Like my first pre-chemo buzz… I think it was the act of making the choice. Of not waiting for Chemo, for Cancer to steal one. more. thing. from me, from my life.

.

Of course as a bonus- I look pretty bitching as a baldie. And Cancer hasn’t changed everything. I’m still fat. I’m still fabulous. It’s just that now, I’m not burdened with the ordeal of having to make my hair behave for a few months.

.

So here’s to being beautiful. Even as a psycho-possessed-kewpie-doll.

Even bald.

Still me.

.

Beautiful.

Close Shave

Current state of affairs.
Post shave.  This is as close as we could get with clippers.
Getting ready to take a shower and razor off what’s left.
.
I will admit, I feel a little bit less traumatized now than I did earlier.

The Other Blog

I’ve been posting a lot of my cancer feels on my main blog this week. Part laziness and part just finally settling in to the idea that I can’t just.. separate my Cancer from my life.

.

I think that even though the whole point of this was to keep my cancer-related whining away from MOST of the rest of the people I interact with- the real reason I separated it out was because I could pretend that it doesn’t infect my everyday life.

.

But this week shattered that in a way I didn’t really expect.

.

When I was first diagnosed, and we realized after seeing Dr. Kehoe that Chemo was going to be involved, I said immediately that I was going to shave my head. I didn’t feel like I could handle watching my hair fall out. So, June 1st, a bunch of my friends rallied around me and I got my hair buzzed down to almost nothing. It felt amazing. Empowering, courageous, hopeful… it had this illusion of control.

.

And then of course, my hair didn’t actually fall out. But I became nearly housebound during daily radiation, trapped by the gastrointestinal issues that came with all of that. Still, for some reason, I kept separating my cancer from my regular life. At least here.

.

My hair grew back, slowly. It was a different color, a different texture, thinner. And I started getting used to it. I didn’t really like it, but I was getting used to it.

.

This week though—

It started to fall out. Just in strands at first. But then, running my hands over my head produced small piles of hair. Today, I’m about half bald, half hair. I spent the last 2 days buying hats and scarves. Hiding my head from my family… even from myself sometimes.

.

And all the while, I’ve been posting about it on the main blog. Because I think I’m finally realizing that cancer isn’t something I can separate. I don’t know why it was the hair that finally changed that. But it was.

.

There is something really horrific about watching your scalp appear in a 3 day period. About seeing hair flutter down constantly onto your desk, in your bed, at your feet.

.

I knew it would be hard to handle. But I didn’t have any idea how hard. Tomorrow, I’m having my head shaved. And I know it’s the right decision, and it will be so much better than continuing to watch this horror film to it’s inevitable conclusion. But at the same time, I am having almost as hard a time adjusting to the idea of the shaving as I have been to the falling out.

.

I’ve never cared about my hair. Ever. I was actually kind of glad when she told me it would fall out during treatment. I’ve threatened for years to shave my head just for fun. And maybe if I’d shaved it ahead of this round too I’d feel differently about it than I do now. Maybe not. Maybe I’d still feel the same, but just about losing my eyebrows, my eyelashes. :shrug: I don’t know.

.

I’ve never cared about my hair. Never been attached to it. Frequently found it more obnoxious than anything else. But now that I see it, stacked in my palms, making dark lines on my desk, trailing behind me on the bathroom floor- I find myself traumatized by the act of losing it.

.

A friend said that maybe part of it is that it’s so recognizable. It’s this absolutely irrefutable sign that I really am “sick.” And I think that’s probably part of it. Through this whole process, all I’ve heard is, “you look amazing,” “You look a lot better than I thought,” “you still look really healthy” “you’re the healthiest looking sick person I’ve ever seen.”

.

But now— with the hair of an abused baby doll, sparse and stuck up, uneven— now, I look the part. I look sick. I look like I have Cancer. I can’t hide from that anymore.

.

I can’t pretend that Cancer isn’t my life right now. Because it just is. It’s not permanent. It’s not even really long term in the grand scheme of things. But right now- Cancer IS my life.

.

And I don’t have words for how much it hurts to finally see that. To feel it.

.

This will pass. I’ll finish treatment. I’ll go into remission. My hair will grow back. My body will stop aching. I will be done with this.

.

But right now, it is my life.

.

Tomorrow I shave my head. And I accept that Cancer is my life.

.

For now.

Hats

 

My new collection of hats/scarves.
.
We kind of hit the jackpot at Sam Moon on hats.  All but the last 2 are from there.  And next time I sell a bunch of jewelry (hopefully that’ll happen soon), I’m going back to Charming Charlie’s for more scarves.
.
Forgive the picture quality (or lack thereof).  Photobooth really is not that impressive for taking pics.  But it was quick and easy so there ya go.
.
Now.  Time to get back to beading.

Last Day with Hair

The second of the photos I wasn't going to let anyone see.

My last day with hair...











Last day with hair.
.
This is my head as of 5:16pm.  Tomorrow, I meet up with my stylist and our friend to shave off whatever is still left at that point.
.
Got 5 new hats today (photos appearing soon).
.
I think I’ll feel better when I’m just… bald.  I think it’s all the in-between that’s so hard to swallow. I still am not sure why I’m posting this.  Maybe I’m trying to make myself feel brave?  :shrug:  But whatever.
.
Goodbye hair.

Thinning

I wasn't going to post this here.  I wasn't going to put this photo in a place where people who know me, who love me, could see it. 

But as I've been creating this blog on blogger, as I've been sharing the experiences I'd originally been recording elsewhere, I realized that a big part of what I want- is to be honest about this whole experience in a way that people just... aren't. 

And part of that honesty is these moments.  Not just the way I TALK about them, but what it looks like.  What it looks like to sit in a room, and on a whim, take a photo of my chemo hair loss.  To take a photo so raw and so painful that I can't even look at the lens.

So this is the post I made in private. 1 of the two photos I didn't show people.  Because this is the reality.  Whether I like it or not, this is part of my Cancer journey too.





I’m not posting this on FB.   I’m not even sure really why I’m posting it at all.
.
I guess there is a part of me that needs to document it.  To try and force myself to see it.  Accept it.
.
This is what’s left.  For now.
.
Wasn’t kidding about a well timed shopping trip.
.
I won’t let Kris see it.  It’s hard enough to handle my emotions.
.
She asked tonight if I was sure I didn’t want to get a wig.  I’m still undecided about that.  For now hats, scarves are fine.  Maybe after Friday, when I shave off whatever’s still there.  Or maybe next week.
.
But this is me.  Tonight.  A patchwork of hair and tears and anger.  :shrug:

T-Minus 1.75 days

Hat and scarf buying happened just in time. There’s no way I can pass anymore. There’s this… stack of hair on my bedside table. It just keeps kind of… coming out. Not falling out on it’s own still… but if I … rub my head on my pillow, or run my hands over my head. It’s there.

.

I look a bit of a fright.

.

T minus 1.75 days until head shaving.

.

At least now I can hide it under a hat. If I can be bothered to leave the house until then anyway.

Walk Out the Door...

Time to go buy hats.

.

All I have to do is leave the house. Leave the house and pretend that I don’t care that I have bald spots. And that my hair is still falling out. And that I am not feeling completely overwhelmed by my life right now.

.

That’s all I have to do.

.

It’ll be better once I have something for my head right? Because then I can go do the rest of my shopping and just pretend it’s a fashion statement.

.

.

.

Fuck.

.

Why is it so hard to just walk out the fucking door?

Can You Ever Be Ready?

I kind of can’t deal with the hair thing.

.

I’m going hat shopping tomorrow. If I can stand to leave the house. It’s not exactly coming out in clumps… but… I do have my first little bald… patch.

.

Head shaving is scheduled for Friday. Thank god my stylist is also a dear friend. Instead of having me go to the salon (recognizing that I’m feeling a little bit, um, traumatized right now), we’re meeting at another friend’s home to do the deed. I don’t even have words to explain to either of them how grateful I am.

.

You would think that after buzzing my hair before Round 1 (only to not lose any hair at all), and being assured it WILL fall out for Round 2… and all the build up to this- that I’d be ready.

.

But it is indescribably horrifying to actually watch it happening. To be afraid to move too much for fear that it will fall out on its own. To have to constantly remind yourself not to run a hand over your head, through what’s left… knowing that you’ll just come away with bunches.

.

To constantly scrutinize the mirror- trying to see if it’s noticeable.

.

And the moment when you realize that it is. When you realize that there is a strip of bare scalp… right at the front of your head.

.

I should have done my hat shopping today.

.

I should have been ready.

.

Can you ever be ready?

.

I don’t look like me anymore.

.

Let’s face it. I haven’t for awhile. I should have just shaved it before I started Round 2. At least then it would have been my choice. Like I did the first time. Curiosity won-

.

But there’s no satisfaction in that this time.

Shreds

This is what’s happening in my room right now. I should stop…. But I keep running my hands through my hair thinking it will stop and it doesn’t. There is just…. More and more.

.

Wow. To borrow from fandom-speak: so many feels.

Curiosity or Fear

I keep batting around the idea of shaving my head. For real this time, and on my own. Part of me is curious to see when exactly it will start really and truly coming out in clumps, as they say it will.

.

And part of me sees it already breaking off, cracking almost in half. I realized last night that my hair— is shorter. Not because its been cut, but because it is brittle, and weak, and is breaking apart. It’s just not coming out at the roots. Not yet anyway. Or at least not much. There’s more on my hands in the shower when I wash it. Root. Follicle. Full strands. And I know its coming.

.

So what wins? My curiosity? Or my fear? . I guess I just don’t know yet.

.

.

.

Wow. The universe is a lover of irony. I just came away with a half handful of hair from the back of my head by my neck.

.

All the thinking about it. And I was so not ready for that.

Angry

I think I’ve just realized how incredibly angry I still am. About all of this. About Cancer. About Chemo. About surgery, and pain, and nausea, and being useless and feeling worthless, and just… all of it.

.

One of the dogs was barking. Because that’s what she does, she fucking barks. At nothing. For no reason. It might rain- she hates rain. So she barks.

.

But as usual, I was up late. My sleep schedule is completely screwed up. So I’d only been asleep for about… maybe an hour when it started. And Kris is gone, at church. So it’s just me, and the house, and the animals and the damn dog started barking and I snapped.

.

I stalked across the house, slamming 4 doors (2 on the way to her kennel, and 2 on the way back) and screamed. Screamed so loudly that my throat hurts… that my chest heaves… that my eyes are sore from the sheer exertion of it.

.

And the dog stopped barking. I mean, wouldn’t you?

.

I should feel bad. I know I should. But I don’t. I just feel angry. And I hurt. And I’m exhausted. And faced with the task of trying to go back to sleep- nauseated and tired and in pain.

.

And I’m so angry. Not at the fucking dog, because what would be the point of that? But at the world.

.

I spent literally 20 years of my life pretty much feeling like the most useless, vile, ugly piece of shit there was. Desperate for most of those years to kill myself. And then at 29 it finally clicked. Some things in my life that had twisted my head all to ruin finally got sorted. And I started, for the first time ever, to be really, and truly happy…. more than that even: to be content.

.

I had a good job. I mean, it wasn’t my favorite of “things I’ve done” for money, but it was a good job, steady, well-paid. I had coworkers who were even… friends to a certain degree. I was good at it. I was valued.

.

I had my art. My aspirations to be a photographer, my passion to capture things other people just… missed. And I was good. I was hopeful. I thought, genuinely, that someday… I might be able to quit that good job and live off of my art.

.

I’d made friends, learned to handle my family and their shortcomings and they were learning to handle me and mine.

.

I finally felt like my life was MINE. And then with a lot of hard work- my body and I started working this tiny thread of truce. And then there was finally peace between us… and then one day I woke up and realized I could look in the mirror and not see a monster. 20 years. 20. YEARS. I hated the sight of myself. And I finally learned to love me- ALL of me.

.

And then the Cancer came. And for a year before we even knew what it was it ate at me. But I dealt with it. I lived with it. I was still ok, all things considered.

.

But then there was a diagnosis. And then an emergency surgery. And then the big surgery. And then an infection, and a wound-vac, and a giant scar, and misshapen belly, and then— treatment. Radiation and chemo that completely wracked my system. And from March to August, nearly 50 pounds lost. To lack of appetite, to nausea, to diarrhea. To the ravages of radiation.

.

And then a break. To recuperate. To recover. To reassess. But now, treatment again. Chemo only. But oh what a wallop this one is. One treatment in out of 4 and I am reduced. Crippled by pain, enraged by frustration, I am worse than useless these days. I am a black pit of anger.

.

I am seething. Because this is not what my life was supposed to be this year. Or last. Or however the fuck long this goes on for. I’m supposed to be done in November. I’m not holding my breath.

.

I am black with my anger. Furious at the life I was building for crumbling so quickly and so completely. My good, stable job- gone. My passion, my vision- stuck at home… shelved and collecting dust. My family- too far away to touch and hold me with any real regularity. The saddest part of that of course that aside from my dad out of state- the rest of them really, distance wise, are NOT actually that far. But try driving a car on narcotics— or the sheering, tearing pain that comes without them.

.

My anger is a thick, syrupy soup. I have thought in my life that I was angry before but it is nothing compared to my Cancer Rage. To have been cheated (even temporarily) of the things I had spent so many years believing I didn’t deserve, only to have them ripped from my hands almost the moment I realized differently.

.

But all it does is make me tired- this fury. It adds to my pain physically, and drains me even more emotionally. But it will not leave. It just… slows- simmers. Waiting for a barking dog, or a noisy neighbor, or a stubbed toe, or just- the dawning of realization again that my life- until this is all over at least- is owned by Cancer.

.

And I’m lucky. Because theoretically, there are only 3 treatments left for me. 3 sessions between myself and that magical status of “Cancer Free.”

.

If my heart isn’t eaten away completely by my rage first. I will be one of the lucky ones.

.

But even in my gratitude, my anger writhes… seeping around the edges of my thanks and making it heavy and insincere. I find it hard to be genuine around its considerable sludge.

.

But I don’t know how to make peace with all of this Cancer… while this mess of emotion trudges alongside it. I don’t know how to stop feeling angry. I only know how to hide it…

.

.

most of the time.

Unpleasant Week

It’s been a pretty unpleasant week really. Between pain and exhuastion and frustration, and wicked weird dreams thanks to the pain pills- I’m just about ready to flip out.

.

This is Pride weekend in Dallas. And I really thought this would be the year I’d finally get to go. Last year, I went but never was able to find a parking place… and because it was pre-diagnosis, but when I was still so affected by my body’s exhaustion and issues, I finally gave up and just went the hell back home.

.

And I thought surely this year… I’d be a week past treatment, I could go early, get a parking spot- I have friends in the area I could crash at their place to start with and meet up with friends later.

.

But I have been in so much pain this week. More than my body is tired. I finally told my friends I wasn’t going to make it. I just can’t. Honestly, at this point, between pain and exhaustion… I’d need a wheelchair. Genuinely. And there’s a lot of things that stop me from borrowing one and just going. I just… I’m not ready to be that girl. I’m not ready to be stared at, and judged, and have people assume I’m in it because I’m fat, or lazy. Because that’s what people would see. Not, 31 with Cancer, in pain, desperate to be somewhere I really want to be. They’d see young and fat and probably just too lazy to walk around. I don’t have the energy to deal with that.

.

And let’s face it. It’s better for my immune system NOT to be out in the middle of crowded Dallas surrounded by thousands of people. My pain really just proves that.

.

But it sucks. Because all Summer… I kept thinking this would be the year. No work to conflict with, it’s a free event, we have a place to connect in order to meet up and go walk around. But once again… not meant to be..

.

The pain this week has really set me back, not just physically but emotionally. I’ll admit it. I’ve been really depressed for the first time in quite a while. There is something about life-stopping pain that just… sort of takes over the brain. And I know it’s temporary. I get that. I’m grateful for that. I have a whole new level of respect for the people in my life that deal with chronic pain on a daily, permanent, and life-altering level.

.

But I am not handling this very well. To someone who worked so so hard to not feed the bad-self-esteem monster, it has done surprising and disappointing things to my psyche. I don’t like the person I am when I’m in constant pain. I don’t like the person I am on the painkillers that are necessary to make just being … alive - bearable.

.

Like I said, it’s been an unpleasant week o say the least. And so, like so many days this week, I wake up. I take another pain pill. And I crawl back into the dark, warm, quiet comfort of my bed. And think that maybe tomorrow… maybe tomorrow I can move without needing a narcotic to do it. Maybe tomorrow the black cloud I’d spent so much time and energy banishing will be gone again.

.

But for right now… it’s another narcotic and more sleep. Because the dreams may be weird, but at least in them- I don’t notice the pain.

Callback

Callback from my Oncologist NP confirmed that the pain I’ve been having is normal and typical. Monday/Tuesday were the days when my bone marrow was at it’s most vulnerable and that can apparently lead to pain and related issues in my bones and joints. She’s refilling my pain pill meds and said to let them know if it doesn’t continue to improve.

.

I haven’t called the supplemental insurance people. Because I just don’t have the energy for the argument right now.

.

Going to get dressed, and go see my family to collect some love. Then come back home and go back to bed until I feel better. Because… well, that’s my life right now.

Chemo Fog

That moment when you suddenly remember you’re waiting on a decision for a supplemental insurance claim and check their website…. and now you can’t sleep because you’re so pissed that it was declined that you may have to wait up until their phone lines open to give someone a piece of your mind.

.

There is absolutely, positively, ZERO reason for my disability claim to be declined. The ONLY requirement when I signed up… was that you were out of work for 14 days at least in order to qualify. Guess what bitches, it was after the waiting period, and I’ve been out for months. You owe me $3600.

.

The fact that I completely forgot about it in my chemo fog doesn’t change the fact that it was a totally valid claim that you have no valid reason to deny. I can’t WAIT to hear the explanation on this.

What to Worry About

I’m in too much pain to bead. But I’m too hopped up from being in bed for like 2 days to lay back down and try to sleep either.

.

It’s too early to take another pain pill (those are going really fast by the way… erm…)

.

I don’t know what to do with my time right now.

.

And dammit if my left pointer finger isn’t decidedly numb. Am i really supposed to call up to Simmons and say, “hey remember how I’m supposed to tell you about any synesthesia? I have one single solitary numb finger, does that count?”

.

I feel like an idiot. Back to not knowing what’s a problem and what’s not, what’s a big deal and what’s not.

.

I think I’ll wait on the numbness thing. I mean, it’s just one stupid finger right? It’s not even the whole finger that’s numb. Just the top… top to the first knuckle. No fevers, no rashes.. just the excruciating pain… and the one numb fingertip.

.

I DON’T UNDERSTAND WHICH THINGS I’M SUPPOSED TO WORRY ABOUT.

.

/freaking out.

.

don’t mind me.. just.. having a moment.

.

Maybe me and my numbdumb finger should go back to bed after all.

A Couple of Good Hours

Heard from my gran today who confirmed several of her friends who have done chemo… have had issues with the kind of severe body pains I’ve been dealing with. She said for her friends, it was a matter of a few days and then things settled back down.

.

Had a couple of good hours today so I managed to get a little beading done. But now pain is back so I’m headed for a pain pill and back to bed.

.

But, a couple good hours today is more than I had yesterday or Sunday so… yay.

.

Otherwise, still having taste issues.. oh and.. while my hair hair is still fine… I am losing eyebrow hair, lashes, and pubes. Because… yeah….. wtf. Guessing my head hair is going to be next at some point but for now… it’s all the extra hairs that i wouldn’t even notice otherwise.

.

Guess there are pluses to not having anyone to have sex with. Nobody to notice my odd hair-shedding. Chemo side-effects are fucking weird.

How to Deal

I honestly don’t know how to deal with how much pain I’m in right now. I took another pain pill but my knees and my shins are still just… excruciating.

.

I finally looked up side effects and it turns out the Paciltaxen (sp) does cause 2-3 days of arm and leg joint pain. Which is swell to know except it doesn’t actually make it hurt any fucking less.

.

Not that I didn’t before, but having a whole new level of respect for people who live with chronic pain. I have to think this will actually go away at some point- but seriously, on my second full day of just…horrifying pain and I can barely think much less function.

.

I don’t know how to deal with it. I just don’t. I can’t THINK. My whole body just hurts so so much, it doesn’t even feel like mine.

.

And of course the pain pills give me really bizarre dreams so if I DO fall asleep, when I wake up I’m in pain and completely disoriented too. . I really fucking hate this. Sorry to be a whiner. But it’s 6:30am… it’s not like anyone will actually read this anyway.

.

time to try and sleep again. Hopefully that fucking pill will finally kick in. At least a little. jesus.

On the Way Out

Pain is a little better finally. Can’t remember what time I took the last pain pill, but it was long enough ago that I can say the pain is actually improving.

.

Won’t be doing any jumping jacks anytime soon, but at least I’m not in pain to the point of tears anymore.

.

Wonder if this is going to happen after each treatment?

.

In other chemo news… have found quite a few foods that still taste normal. Diet coke unfortunately is not one of them (yech). Watermelon, ritz crackers, apples. My chinese food last night tasted… different but not bad. And today’s omlette was also different but not bad.

.

Hair is still.. hanging in there. So far. She said it might be a couple weeks before it started to fall out though so technically… it may not start till next week.

.

I’ll just be glad if the joint/bone pain is on it’s way OUT.

Common

Finally looked up side effects for this round of chemo:

“Side effects

Common side effects include nausea and vomiting, loss of appetite, change in taste, thinned or brittle hair, pain in the joints of the arms or legs lasting two to three days.”

.

2-3 days of joint pain. Maybe that means after today it’ll be better. Right?

.

fuck.

Side Effect Check

Leaning more and more towards pain being a side effect of the chemo. Last night’s discomfort continued today in varying degrees but the pain is so …. universal and so total I can’t think of anything I’ve done that could possibly be causing it physically or directly.

.

Mostly joints and bones… but even… pain in my cheekbones, my jaw. Knees are arguably the worst right now— stuck in vices almost.

.

I’ve been taking pain pills throughout the day bu trying not to overdue it.

.

Better when my body is warm, so I’ve been hiding out under quilts despite the 90+ temperatures outside the house.

.

When I finally fell asleep last night it was after a lot of tears and discomfort. She said the 4th and 5th days after would be the worst and today is day 4… if I’m not better or in less pain by Wednesday, I’ll have to call. I can’t live like this for much longer, it’s just… it hurts too much.

.

I wasn’t really expecting it, I don’t remember joint/bone/muscle pain being discussed as a possible issue with this round. And I’m not planning to stay upright long enough right now to go research it.

.

Just want to stop hurting and get some more sleep.

.

Aside from that, the only real side-effect I’ve noticed is change in taste. But that happened last time too (although it seems a bit more obvious this go around).

.

Don’t really care about that though. Just want to not be in pain. Not handling the pain very well.

Bone Pains

Somehow in the last hour, it seems that every single joint in my body is in pain and under pressure. Knees, ankles, wrists, shoulders. My head is aching and I feel… just… I feel like shit.

.

And I keep shifting in bed, turning, tossing, trying to get comfortable and I can’t. I’m just… it fucking hurts.

.

And I have no idea what to do about it. I took a hydrocodone but it hasn’t kicked in yet and I don’t even know if this is chemo related or just body weirdness or what. But I’m just… sitting here, bawling.. uncomfortable and in pain and out of sorts and unhappy.

.

I don’t want to be in pain. Where is it coming from? I didn’t do anything weird or different today it just… started in. I mean, my ankles felt a little weak earlier, and my headache’s been building but now it’s just… like my whole body is sore and uncomfortable. All over. And my knees hurt so fucking badly. I really really hate this.

.

I don’t know what to do about it. Like, is this something I call the oncologist about? Or do I just try to deal with it? Normal? Not normal? Fuck. I just got to a point finally where I knew what my body was doing and now it’s all fucked up again.

.

Right now, I just want to sleep. Seriously, just sleep. I’m so tired and I hurt and fuck this shit. FUCK IT.

How Long...

You know the thing is… Even though those CTs came back clear. I am still afraid. I had CTs come back clear before… when there WERE tumors.

.

And maybe it’s too soon to be asking this. Maybe I should wait until I’m really done with treatment, but the truth is, it is always in the back of my mind:

.

I am afraid. I think I will always be afraid. What if it comes back and they don’t see it? Will I be afraid of Cancer for the rest of my life? Even when this is “over”?

.

I’m not even done with treatment and I’m afraid. How long will I be afraid?

Chemo... Round 2

So the Chemo trail gets real today.

.

The last round was just a booster to help the radiation work bettter. But now we’re dripping the real shit.

.

Signed a giant consent form with an interesting array of listed side effects. Things I have to call in about:

-rashes

-fever over 100*

-Feeling… odd or unwell at all

-Nausea issues not managed by meds

-neurasthenia (numbness/tingling in fingers, hands, toes)

-difficulty breathing/tightness in my chest

.

I’ve been told my hair WILL fall out this time, probably in the next couple of weeks. I have an extra nausea med, it’s actually a steroid. I’m to take 1-2 every day for 3 days after chemo along with the others if I need them too. Evidently the nausea can be a little overwhelming with this combo.

.

It was a really long day. I got to the center at 9am (late by about 15 minutes). They accessed my port but couldn’t get blood return, so they ended up doing my draw from my arm (they had to call the super-phlebotomist to find a vein) while they shot me up with “port drano” to clear my port for treatment. So while that drug was working, I had my appointment with the Oncologist and her team

.

Everything looks good. CT came up clear, no new tumor growth, some kidney stones that aren’t bothering me as yet that they’ll keep an eye on. Physical exam was also good. Everything is good.

.

We’re planning 4 cycles of chemo for this round. Then another evaluation. At that point she’ll decide if more cycles are needed or not.

.

I’ll admit I’m feeling a little anxious about this round. Today didn’t really help, to be honest.

.

They set up the drips as usual, pre-meds, flush, etc. There are actually 2 chemo drugs this time… 1. Carboplatin, and 2. Paclitaxel

.

The Taxel was first, mostly because they expect issues with it. Whatever fluid they use to deliver the drug seems to have a higher incidence of allergic reaction than other drugs do. And, sure enough… they started the drip, I fell back to sleep and woke up when my face started to super heat… pain radiating from my head down my shoulders and lower back in waves. I called the nurse and they stopped the drip, pushed benedryl and ativan. Apparently it’s especially common in those with gynecological cancers. :shrug: Since I don’t usually have major allergy issues, it was pretty scary and unpleasant, but it got dealt with quickly and before it could really affect my stats. They got Dr. Kehoe who came in and was very reassuring, watched and waited until the symptoms went away, and then talked to me a little about the process.

.

They will continue to dose me with the Taxel, but instead of putting it on the full drip, they’ll step up the drip speed bit by bit each time. And they’ll start me with a standard dosing of benedryl and ativan as a precaution each time as well. She’s sure that by the last cycle my body will have adjusted and stop reacting to it anyway.

.

The Carbo was easy. It only took 30 min to drip. Unfortunately because they had to slow the drip of the Taxel so much… even with the minimal 30 min drip for Carbo, I didn’t get to leave until 7pm. A 10 hour day at Simmons. :oy:

This is also the time when I start having to be incredibly careful about who I’m around and what I’m exposed to. Got a cold? You won’t see me for awhile. The immuno-suppressant factor is pretty high for both of these drugs evidently.

,

Should be interesting. My next cycle is September 27th. If my math is right my sessions will be Sept. 27th, October 18th, and Nov. 8th. So if I’m able to stop at the 4… then I WILL be done before Thanksgiving which would be nice.

.

4 cycles. 12 weeks. 1 down, 3 to go.

.

I can do this. And then I can be free. Cancer free.

.

That’s the whole point right? I mean, all of this will be worth it. To say I beat Cancer.

.

I just wish that made me feel less frightened of the process.

Fingers Crossed

CT scans went fine. Nicest facilities I’ve ever been in for a CT. I’m used to having them at small clinics or the hospital.

.

I got a warm robe, they covered me with a warm blanket, lots of pillows. Aside from my arms overextended above my head it was actually pretty comfortable.

.

Assuming if nothing major shows up she’ll review them with me on Thursday when I go in for my pre-treatment appointment.

.

Still a little emotional about starting treatment again. Not to sound immature but… I don’t wanna.

.

Just hoping nothing pops on the CT so that we can continue on with this being the last round. I don’t know how people handle being in treatment for years… I don’t know what I’ll do if it comes back someday and I have to do this over again. I don’t know if I’m one of those people who is strong enough to do this again. :shrug:

.

Fingers crossed.

Scans

CT Scans tomorrow. Chest and Abdomen.

.

Not sure if I’m more scared they’ll find something, or that they won’t. After all… all those tumors in my uterus never showed up on CTs.

.

After CT Scans, I have another week and then Chemo # 2 starts. I’ve been moping most of the day. I know it’s stupid, I just really am not looking forward to this. It could be so much worse. My treatment is so minor compared to some folks. 1x every 3 weeks for 4 sessions. Done after Thanksgiving.

.

It’s just in the last week I’ve been feeling so much better. Finally. And now here we go back to treatment and side effects.

.

At least my hair should fall out this time. Is it sad that I feel like that will be a good thing? I hate the way it grew in. Wonder how things will change this go around.

.

Oh well. Not like I have a choice right?

Bloodshot

I constantly forget that I literally CANNOT eat the way I used to.

I went to Jack in the Box to get lunch. And I guess I ate too much. It didn’t seem like too much, and I was very hungry.

.

But I just vomited so violently that there are broken capillaries in my forehead, cheeks, neck… and my eyes are COMPLETELY bloodshot.

.

:sigh:

.

There wasn’t even nausea first, just went to the restroom and suddenly… ugh.

.

So yeah, that was fun.

.

I think JiB is officially off my list of places to eat. That’s the 2nd time that food from there has led to something like this. I’m done.

.

blegh.

.

Hope some of the bloodshotness is out of my eyes by tonight’s show.

Random Nausea

Still dealing with random bouts of nausea. Currently sitting on my bed, trying to decide if this is one of those bouts that won’t go away until I actually throw up and I’m starting to think it is. I hate those. I am not a good thrower-upper. Never have been.

.

But I can’t seem to settle it, and I don’t think it’s going to pass until I do. Frustrating, and unpleasant.

SURPRISE!

I don’t think you understand the true marvel that was today.

.

I had a really crappy night, hardly slept, issues with a neighbor, wicked bad dreams. Hauled myself up to go to brunch with the Fairy Godmother and Honorary Fairy Godmother. As requested, I packed up my containers of finished jewelry pieces for HFG to go through when we finished eating.

.

We arrived at the restaurant, and I discovered: a SURPRISE BIRTHDAY PARTY for me!!!

.

I have a group of “goils” here in North Texas that I bum around with… I’ve known them since about 2004 online, and ever since I moved back here, I’ve spent varying amounts of time with them all and they’re a huge part of my support system. Earlier in the summer I’d mentioned wanting to do something really big for my birthday, but not having the energy or gumption to plan it. One of them volunteered to take on that task.

.

And today, I discovered the final product. We met at Uncle Julios (my favorite tex-mex restaurant) and I was surprised to see my goils in attendance, balloons on chairs, smiling faces, gifts. It was WONDERFUL!

.

And when food and jewelry shopping (I made a ton on jewelry sales today!!) were over— they brought out my very own TARDIS CAKE! :dies:

.

It was awesome.

.

I was exhausted, and if I’d had to choose, today was not the day I’d have chosen for a party… but oh my heavens it was so lovely and so special and I feel so loved.

.

It’s funny. When you get sick, you have certain expectations for people. Some fall away, hide. Either because they can’t deal with the pain of your illness, or because they weren’t as close as you thought they were to begin with. And then… some people just… rise to the occasion. They reach out and check in and constantly remind you that they’re there, that they’re loving you and caring about you and supporting you and praying and thinking about you.

.

These girls are like that. Constantly a hand outstretched somewhere if I need it.

.

Or, if all else fails— a really amazing Tardis Cake.

.

This was the best day I’ve had all year. Easily. And when it finally hits me (after a nap and maybe a quick trip to Michael’s) I will probably bawl my eyes out. But happy tears. Because I still have people who will go to great lengths to tell me they love me. Individually, and as members of this sacred-to-me group of women. And I couldn’t possibly ask for anything more than that.

.

So happy belated birthday to me. It was so worth waiting a week.

Radiation Skin

I discovered tonight that I *did* actually get “radiation” skin.

.

I was falling asleep, or trying to- and I rubbed my belly… at the sides.. in the crease where my waist meets my hips.. and skin rolled away. Just small pieces. Being a picker, of course, I started peeling.

.

It took me a minute to realize the implications. I got up, got a hand-mirror, turned on the light.

.

Stared at the dark skin, the peeling flakes, the soft raw-looking flesh underneath.

It doesn’t hurt. Less painful than a sunburn anyway. Itches a bit, a sign of the skin repairing itself no doubt. But disconcerting. Strange, to see it when I didn’t even really notice it before. Benefit (or detriment) of being fat I suppose. My own folds and wrinkles hid it from obvious view.

.

I don’t know how to feel about it. Relieved? Because I know radiation is over… that I’m only noticing it as it’s healing itself? Upset? Because… one more sign of what I’ve been dealing with? One more piece that just… keeps surprising me with side-effects?

.

I’m tired of these surprises. I’m tired of being fine one day, then waking up vomiting the next. Tired of knowing my body, knowing my skin one day and waking up peeling and red and ugly the next.

.

I’m tired of this. Things were going so well when I first got sick last year. Really really well, well in ways I never thought it would. I was at a stable job, pursuing my art, loving my body, happy with who I am. And then Cancer changed all that, changed it even before I knew that it WAS Cancer.

.

I keep thinking it’s going to be over, that I’ll get used to it because I will be beyond it. But will I ever really? I have another month of treatment, though thankfully no more radiation. But even beyond that. Every 3 months I have to go back. To get checked. 3 months. Every 3 months, to be reminded, to be rechecked, to be re-examined.

.

No matter what I think or say… Cancer will be a part of me for the rest of my life. An invisible companion- stretching out a hand, waiting, looking for a way to grab hold of me again. And maybe it never latches on. Maybe I never again have to feel its fingers in mine… but it will always be… THERE. Here. Next to me.

.

I don’t know how to manage all of the emotion that comes with that. And I don’t know how to talk about it. How to make sense of it.

.

My life was as close to perfect as I could ever have imagined. And now, because of all of this, I have to rebuild. And maybe it will be better. Maybe this is just the beginning of more wonderful and amazing and satisfactory things.

.

But right now, all I can see in my future is 2 sets of footprints… one belonging to me- and the other… to the Cancer that will walk (hopefully) silently beside me for the rest of my life.

1 Week

It’s been more than a week since my last radiation treatment, and longer since my last chemo. And yet I started the day by projectile vomiting in the bathtub. Nothing better than that.

.

Still a little nauseated, and that was almost 20 hours ago. Just when I start to think it’s over… it starts all over again. I don’t get it.

.

I have my follow up with the oncologist tomorrow and I’m hoping there isn’t any conflict with the insurance. I’ve officially opted for my cobra coverage, but I just have this sinking suspicion I’m going to get drama tomorrow. I can’t afford drama.

.

Heading to bed now. Spent the day resting and beading… did finally eat something which has managed to stay down, thankfully.

.

Have to get bloodwork tomorrow too, fingers crossed that my magnesium and potassium will finally turn up normal again. Or normalish.

Happy Birthday to Me

Feeling a little better with some caffeine. Decided to power through and enjoy myself at least a little bit.

.

Today’s plan:

1. Brunch at Barbecs

2. Shopping at the proper bead store (yay!)

3. Napping

4. Beading

Tomorrow’s plan:

1. Doctor Who marathon with Kris

2. Ice Age 3 at Studio Movie Grill (dinner and a movie!)

.

And that’s my big birthday weekend. It’s enough. Friends are planning a big to do in a couple weeks (and that’s all I’ve been told). That will be good.

.

Now, waiting for Kris to be ready then time for brunch.

Lucy

Lucy (my dog) was put Down about 745 this evening. In the course of the afternoon, in what we call... a chemo fog, I put her outside and then forgot she was there. 

The consensus was that even if she made it to the e-vet (which was frankly a major if), her condition was bad enough that we likely still would have been looking at euthanasia. We talked about it and it seemed crueler to try and take her over there with the high risk that she’d suffocate on the way over than to do the merciful thing here and now. They believe that she’d also aspirated at some point as well which added to the problem.
.
Lucy was 11, almost 12 years old and was very very loved. Kris and I were both with her to the end. She will be very missed and its going to take some time for me to be able to look at all of this and not just feel….. Guilty.
.
Love you Lucy-loo and I’m so sorry I wasn’t a better doggie mama to you, you deserved a lot better.

Scared

I’ll be honest, I was really scared today.

.

And I’m still a little scared. I’ve had panic attacks before, and that’s the only basis I have for comparison to what happened today. When I got up, I was feeling a little woozy, and sometimes my lips would feel tingly. I didn’t really think much of it. But it got worse bit by bit as the day went on.

.

I managed to eat something, and make a necklace, then left for radiation. I got progressively woozier as I made my way uptown, and I probably should have pulled over, or asked Kris to take me, but I really thought it would be fine. I decided that when I was done with radiation, I’d go upstairs and see my Nurse and let her know what was up.

.

By the time I was halfway through treatment though it was really really bad. My whole face was tingling and almost numb. It was like the physical effects of a panic attack, except the physical stuff happened FIRST, then the actual panic started- because I had no idea what was going on. I wasn’t having trouble breathing, but the effects were the same. It was awful, and frightening.

.

They brought in a wheelchair to the radiation room, and took me to their little observation room and got me on a stretcher, hooked up a heart monitor, pulse-ox and blood pressure and asked me 5 million questions. They called up to my oncologist and the nurse came down to get some blood. By the time she came back with results, I was feeling a lot better, had stopped tingling, calmed down, stopped crying too (yeah, it was pretty bad).

.

She took me upstairs and they put me in a chemo room and started a drip with magnesium and potassium, which were very very low. They gave me a scrip for potassium, and want me to pick up magnesium pills (can be gotten otc) to take too. They’re fairly sure once they get the balance corrected it will stay corrected and the low magnesium levels evidently explain my reaction today.

.

I’ve been home since about 6:30 though, and I still feel… a little puny. A couple of times, when I was standing in the kitchen talking to Kris, I swear my lips started tingling again. I guess I need to take it easy.

.

But I hate this. I have no idea what my body is doing anymore. Today was my last day of radiation, I expected it to be good, happy even. Now I’m tired and scared and yes, woozy again. :sigh:

.

Frustrating. I have a month off of treatment. And even after that, no more radiation. I just hope my body will calm down, so I can stop being afraid.

4 More Days

Took a shower. Got done and was so dizzy I ended up in my towel sitting on the toilet lid spinning. Then threw up in the bathtub.

.

Still pretty dizzy. I think it must be because I’m hungry. Was surprised my stomach managed to actually produce anything. Not sure what to do now to be honest. I really want to call and tell them I won’t finish the radiation. Don’t think I have the guts to do it though. 5 sessions left including today.

.

Guess I’ll head out and try to eat something on my way. Maybe after todays treatment I can talk to him, tell him I don’t want to finish it.

.

I don’t want to do this anymore. I can’t handle it.

5 More days

I’m so hungry I feel like my stomach is trying to gnaw its way out of my body. But first thing this morning, just the thought of trying to eat had me dry heaving for 20 minutes. Thankfully there wasn’t anything IN my stomach to actually get rid of.

.

Managed to eat a few bites of a sandwich before radiation, but then got sick before I could even leave the restaurant. When the techs asked how I am, I was shaking, started crying during treatment… and I think one of them went and got the dietician who tried to hijack me on my way out. I said thank you but I just want to go home.

.

She gave me the same 5 pages about eating around diarrhea that the Chemo dietician has given me 3 times. Diarrhea, for once, was not the problem today.

.

The thought of actually… eating food turns my stomach. Completely. I just can’t. But I am so fucking hungry I can barely function. I don’t know how to deal with this. I honestly have no clue.

.

I don’t know if I can do another 5 days. What if it gets even worse?

Immature

Honestly?

.

I just don’t want to do this anymore. I know that sounds incredibly immature, but I just-

.

.

.

I think radiation was a bad idea. Ultimately it was my choice, and I wanted to do everything we could do to make sure that the Cancer stays gone, but I am so physically unhappy, and so sick all the time. I know that’s sort of… what you get when you fight Cancer. But somehow I still didn’t really expect this.

.

Aside from just the weirdness of being the fat girl whose dietician recommends eating less fibrous, more processed, less healthy food because maybe that will actually stay in my system, every single thing I eat my body rejects. Kris still doesn’t believe me when I tell her that within 10 minutes of eating ANYTHING, I will have diarrhea. It’s not logical that my body would even process food that quickly but it happens. I know it does, because I can go most of the day without eating anything and then the minute I do… diarrhea.

.

To say nothing of the nausea (which to be honest, I did kind of expect… just not like this), and the abdominal pain- no doubt from the cramping/diarrhea issues.

.

I’m exhausted. Fatigued. And my Radiation Oncologist just says, “don’t forget you can take up to 8 Imodium in a day if you need to,” and my Oncologist says, “Call us if you need different nausea meds,” and they don’t get that I’m not a pill person, that I forget to take them, that I hate taking medications. That yes, I am the 1% of people who for some reason, would rather lay in bed nauseated and in pain then take 5 pills to try and make it go away. No matter how stupid that sounds. Some of my thinking is still… disordered. I realize that.

.

I feel like I should have just done Chemo. Except that I know if the Cancer came back and I had just done Chemo, I’d have hated myself for not doing both in the first place.

.

I’m just so tired, and so tired of feeling/being sick. I feel like all I ever do is sleep and sit in the bathroom. Now of course there’s dizziness to contend with, which I’m sure is at least in part, due to my not eating enough.

.

There are times when I’d almost rather go back to being in constant pain, like I was before the hysterectomy. How sad is that? At least then… ok I couldn’t really do anything then either.

.

What happened? Seriously? For awhile things were so amazing, it seemed like everything was going to be great for once. And then all of this shit came crashing down and now I have nothing. No job, no money, no prospects, no energy, no health. I want my life back. I miss my life.

.

Six sessions left. Radiation was a mistake. Too late to stop now.

The World is Awash in Pink

There are other Cancers.

.

Women don’t JUST get Breast Cancer.

.

Women’s health is not JUST about Breast Health.

.

If I wear a peach ribbon, people assume it’s actually Pink. They give me a thumb’s up for supporting Breast Health. I don’t bother to tell them I wear peach because I have Uterine Cancer. Sometimes I do. They rarely bother to look upset. It’s natural to assume otherwise. I did, before I was diagnosed.

.

There is no prosthesis for what I lost to Cancer. There is no rallying cry across the universe for my cause. There is no universal understanding of my shame or pain or fear. No telethons, no 3 day walks, no desperate worldwide search for a cure.

.

My loss is invisible to the world at large. There is no sea of peach once a year to recognize what I and other survivors, other victims deal with. No peach kitchen-aid mixers, or peach pens. Or teal (for ovarian cancer) notebooks, laptop sleeves. I’m as guilty as anyone else. Before my diagnosis, I wouldn’t have noticed either.

.

And I get it. The prevalence of Breast Cancer is probably a lot higher. But it’s not all there is. My experience and my struggle shouldn’t have to suffocate because it’s not the pop-culture-cause. If I’ve learned anything these last few months, Cancer doesn’t discriminate. It doesn’t really care if you’re young, or old, or white, or black, or asian, or male or female, or rich or poor. Cancer is a thief. Of time, of health, of dignity… of life.

.

But the world is awash with pink.

.

Because the honest truth is that the world will always care more about a woman’s Breasts, than they ever will about our health.

Dizzy

Awake for a minute. Going to try and go back to bed until I have to leave for radiation.

.

Feel worse and worse each day. Tired, sick, nauseated, unsettled. 11 more radiation treatments and 2 more Chemo. Then a month off, then more Chemo.

.

I think the Chemo alone will be fine, manageable at least.

.

But the radiation. :sigh: I just feel like I’m draining away. Kris keeps offering to drive me on radiation only days and I keep saying no. But the truth is, she may have to soon. I’m so tired.

.

Spent most of yesterday in bed… probably most of today too to be honest. I don’t know how to manage my symptoms anymore. I’m not vomiting. But whenever I eat, whatever I eat… the diarrhea is so bad. Sorry, tmi.

.

I’m losing weight, more than before. My body is a different shape than it was a week ago. I’m tired of feeling sick.

.

I keep telling myself that it’s almost over but it doesn’t feel like it’s almost over. I hate this. Which supertherapist would say is a poisonous thing in and of itself. But I don’t know how to feel any other way about it. I know it’s temporary. I know I’ll be fine when it’s all over.

.

But I hate it. I hate the way I feel. I hate being sick and exhausted and weak.

.

:sigh: Dizzy. That means back to bed with me.

Big Surprise

I am ridiculously, deliriously tired of being in the bathroom.

.

I had a lovely morning at brunch with the girls. And ever since I’ve been home it’s just been me in bed, and then in and out of the bathroom. And jesus I’m so fucking tired of it. I’m tired of my stomach being torn up, I’m tired of feeling sick, I’m tired of being… stuck.

.

I have 11 radiation treatments left and I swear to god I want to quit. I just want to fucking quit. Can I quit? fuck. I’m just.. I don’t know if I can take this getting WORSE.

.

what’s that? Oh… I have to run to the bathroom again. Big fucking surprise.

First

Oh hey swell… The nausea’s back. Cause that whole 24 hours or so without it was just waaay too long. :sigh:

.

Oh, and as a fun follow up look… I’ve now had my first Cancer Vomit. Super.

.

Fuck this shit.

13 More

Today was not a good day.

.

Had a hard time sleeping this morning the way I usually do, so I woke up about an hour early. Went to radiation and honestly, the minute I walked out- I just felt exhausted, like I’d been hit by a truck. Made it home, started to deal with some anonymous fat hatred that found it’s way to my blog’s inbox… and then had to stop Crawled into bed and stayed there until almost 8 o’clock.

.

I zonked out dead asleep for HOURS. Got up, had some dinner and am still completely exhausted. Of course, in between those two things I spent about an hour in the bathroom before I could catch a break long enough to take some Imodium (which has fortunately finally started working).

.

Seriously, I had such a great day yesterday- and today… ugh. omg.

.

So tired of this.

.

13 more Radiation sessions. I can’t wait until this is over.

Honestly

Honestly?

.

I just fucking hate this. I hate being sick. I hate being nauseated. I hate have to drive up to UT every fucking weekday to spend 10-20 minutes on some slab while people use a sheet to “cm roll” me to one side or the other while my vagina is out in the air for everyone to stare at.

.

I hate nausea pills and insurance and Imodium and dry flaking skin and exhaustion. I hate being pale and jaundiced and looking tired. And I hate feeling like I don’t look sick “enough” for people to really get it. I hate that I’m going to lose my hair and that I haven’t yet. And I hate spending 6 hours every week in a padded chair having poison dripped into my veins. I hate having a port, and I hate the still itchy incision.

.

I hate my giant scar. I hate all the changes my body is making, all the changes that are still to come.

.

I hate that I can never change my mind about having children. I hate that I lost my shitty, over-involved job because it’s taking me too long to be sick. I hate everything about all of this. I hate feeling useless and tired and unproductive. I hate not being creative or having the energy to do anything that I actually want to do.

.

I hate being 30 years old and knowing my Dad will have to pay for my insurance. I hate being 30 years old and knowing I have to rely on Kris for EVERYTHING. I hate not being able to support myself right now, for awhile yet. I hate that I have to be unemployed, that I have to deal with finding another job again, starting over.

.

I fucking hate all of this. I hate it. And I try to be positive and suck it up but right now, I’m nauseated and I’m tired and I just FUCKING HATE IT.

.

Fuck Cancer. FUCK FUCK FUCK.

.

For once, for the first time every my life actually FUCKING WORKED! I hate this. I want my GODDAMN LIFE BACK.

You Look AMAZING

I heard this over and over again. “You are the healthiest damn Cancer patient I’ve ever seen” said one friend. And they mean well. And they’re not wrong either. I had a good day today. My nausea of the last 4 days was almost completely gone, I had some better energy today, usually do on Mondays. I dressed up and cleaned up to go into the office and see everyone. I did it purposely so that I would look … well.

.

But at the same time, there is part of me that kept protesting, “it’s a good day,” “the side effects haven’t been so bad today,” I don’t know why I feel like I have to … justify not looking sick all the time. Which isn’t to say there aren’t days when I do. Kris even said today that my color was a lot better today than it had been this weekend.

.

Why do I feel like I should look sicker? :shrug: I don’t even have the energy to finish out this train of thought. fuck it. I think it’s time for bed.

.

Hello nausea. Not glad you’re back.

Too Tired

I actually talked to someone at Radiation today while I was waiting. (shocking, I know.) Another woman came out of the dressing room to wait and was asking how long my hair had been growing back (not the first time I’ve had this question) and I had to explain that I’d cut it way down, but that it hadn’t in fact, started falling out yet.

.

And she was saying that her hair didn’t start falling out until like.. her third treatment (my 3rd is this thursday), and that she did the same thing aftewards- cut it way down. She told me her current hair was a wig and that she was curious about the grow-back because her last chemo treatment had been in May and her hair wasn’t even as long as mine is.

.

I blogged a little bit about body issues in my other blog, and how I’ve realized that deep down, I’m actually disappointed that I haven’t lost any weight of real consequence. That was a hard thing to admit, and kind of fucked up really. :shrug:

.

From everything people keep telling me week 3 is when all the big bad side effects start to kick in.

.

Bring it on I guess. My stomach is already fucked up when I eat. My hips and pelvis are so sore and stiff. And I’m already exhausted all the fucking time. I don’t care anymore. I’m too tired to give a shit.

Numb

Ok, so ever since my hysterectomy, my ass has been numb.

.

That sounds way weirder than it actually is. But basically when they did the hysto, they did most of it robotically which meant I got strapped down, flipped on my head and invaded by a robot arm.

.

Then as an added bonus, they had to also make an incision in my belly to remove my actual uterus because of the remaining (very large) tumor. After waking up, I did notice at one point that there was a certain numbness over certain areas of my butt, but I didn’t actually ever say anything. I mean… I just figured it would go away.

.

But it never has. And that was April 30th. Well, now a week into Radiation, I am starting to have some feelings. Not like it used to be, but instead… sudden sharp and surprising pains breaking through the numbness. It blows. I mean, it was weird to have my ass be numb. But the pain? Sucks.

.

And I’m sure it’s the radiation, because I’m having the same kind of pains on the front of my body (lower abdominal, mid-abdominal)… basically. :sigh: It’s not enough to warrant medication. Or even mentioning to my Oncologists.. I don’t think at least. :shrug:

.

That was pretty much it. Just. weirdness. And random pain.

.

I’m kind of over it right now. Are we done yet?

.

No. 4 more weeks.

Mean Something

Had a talk with Kris tonight. Well, it started off as kind of general chatter with Kris and our friend Carolyn, about what happens when I’m done with treatment, as far as work is concerned.

.

And the crux of the issue is, Kris really doesn’t want me to go back to my job at all. So after we were done with dinner and driving home we talked about it a lot more. I told her that I kind of agree with her, but that (especially if I don’t get the Cancer benefit from my insurance) it would mean having to lean on her a lot more until I found something else- and possibly even beyond that if I can’t find something comparable to what I make now. And her response was that we will work it out. That she knows I am good for wahtever would need to ultimately be paid back, and that she just really is not ok with me going back to that job. Especially not after all of this.

.

What it really boils down to is getting it to be right in MY head. I have grown very used to being able to support myself. With a minimum of outside assistance. And it will be hard to be unemployed again after 2 years of such rock steady work. But she made a lot of good points tonight. The real barrier to it isn’t even financial. Kris would support me if I needed it until I found the right thing. The barrier to it was my own mind. My own pride.

.

But the truth is, those that know me know that this job is not ME. It’s not where my heart is, my heart is in my art. It’s in my camera, it’s in prints and frames and all the little things that no one else even notices. It’s in a photo on canvas on a wall. It’s in my body, and these little tiny acts of activism and fat acceptance that I grow stronger and more vocal about day by day by day.

.

I want my life to make a difference. I want my voice and my eye and my art to MEAN something. And I can’t do that behind the desk of that job. It will never happen. And if I go back, it won’t matter how good my intentions are… I won’t pursue what I should be doing.

.

And I said last night that maybe this is the Universe’s way of giving me the gift of a gift-wrapped excuse. Of telling me that there is MORE to my future than life behind a desk captive to some rich creep’s misplaced priorities.

.

So I will carry my camera. I’ll carry my short lens, and learn to use it and love it. I will open my eyes to the world again in ways I haven’t in a very. very. long time.

.

I will make art. I will make cards. And as I kill the cancer, as I step back into my own space and time and energy and health and life I will go out and do more, shoot more, create more. And maybe when the time comes I won’t need to play by someone else’s rules at all.

.

For once in my life I have a passion and dedication and determination… and a safety net of people gathered behind me to support me while I try.

.

And odds are… I will need to find another job. But I will pick more carefully this time. I will not be caught up in the desperation of the first offer. I will take the time to choose. And I will decide and pursue something that doesn’t want to take over my life… but to supplement it instead.

.

And the universe nods it’s approval and clears the way and steals my excuses and reminds me… my life is worth so. much. more- and it’s time to act in accordance with that.

.

It’s time to make my life extraordinary.

Awake Again

Awake. Again.

.

Still.

Whatever.

.

Took a nausea pill but it hasn’t really kicked in yet so things are a little iffy. I don’t understand how it can be possible to be this physically and emotionally tired and still not be able to fall asleep.

.

I’ve had bouts of insomnia throughout most of my life. I’m really kind of a night person anyway so to a certain extent it’s not even necessarily insomnia. Except every few years it happens.

.

The last time it was really really bad (like… not too much worse than this to be honest) was when I moved in with dad after I left UNT. I never slept. There would be times when I would be awake for 36+ hours with not a single nap, or drop off, or pause. I’d write nonstop, I’d watch movies, and I’d feel myself losing touch.

.

I won’t lie that the last few weeks leading up to where I am now- have started to really mimic some of that sensation. I’ve cut caffeine almost completely. I try to wind down at the end of the day, give myself some real dedicated quiet/dark time to ease into it. But all I do is lay in my bed and feel like my skin is crawling. Or like i’m too hot and too cold all at once.

.

and I know, I’m not an idiot: I know treatment is causing at least SOME of that. But the drugs they gave me aren’t working. The only thing that seems to genuinely put me to sleep- is the iv injection of ativan. I take the pill form at night. It doesn’t. do. shit.

.

So I’m exhausted. To the point of added nausea. To the point of depression. To the point of feeling like I can’t function around the moodiness and stress and sheer exhaustion. And it’s not because I’m not tired. Apparently tired has nothing to do with it. And once I do zonk out, I can sleep fairly deeply, even wake up feeling rested to a certain degree. But falling asleep has become something really torturous for me. And I don’t know what to do about it.

.

I have an appt. at the sleep clinic up at UT on the of July. But jesus, how do I even begin to survive that long? emotionally, mentally… fuck that- physically?

.

I just want so desperately to be able to fucking SLEEP.