Disappear

I am struggling emotionally right now.

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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.

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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.

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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.

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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.”

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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.

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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.

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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.

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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.

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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.

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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.
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Just… Another week. I don’t want ANOTHER week between me and being done.
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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.
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Another fucking week. I just want to be done with all of this. This was supposed to be my halfway marker.
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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:

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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.

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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.

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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.

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: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.

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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.

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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.

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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.

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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.

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

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And the messages. You guys.

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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.

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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.

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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.

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

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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.

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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.

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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.

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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.

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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*.
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I’m thinking I may be running late on the mask-wearing front.
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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.
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File this under things cancer has made me afriad of.

Here I Am

So… here I am.

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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.

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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.

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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.

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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.”

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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

Even bald.

Still me.

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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.
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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.

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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.

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

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.”

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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.

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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.

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

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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.

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But right now, it is my life.

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

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For now.

Hats

 

My new collection of hats/scarves.
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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.
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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.
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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.
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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.
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Got 5 new hats today (photos appearing soon).
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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.
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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.
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I guess there is a part of me that needs to document it.  To try and force myself to see it.  Accept it.
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This is what’s left.  For now.
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Wasn’t kidding about a well timed shopping trip.
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I won’t let Kris see it.  It’s hard enough to handle my emotions.
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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.
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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.

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I look a bit of a fright.

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T minus 1.75 days until head shaving.

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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.

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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.

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That’s all I have to do.

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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.

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Fuck.

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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.

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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.

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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.

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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.

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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.

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

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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.

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I should have done my hat shopping today.

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I should have been ready.

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Can you ever be ready?

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I don’t look like me anymore.

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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-

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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.

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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.

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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.

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

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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.

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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.

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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.

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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.

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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.

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

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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.

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

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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.

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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.

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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.

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

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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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.”

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

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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.

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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…

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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.

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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.

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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.

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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.

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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.

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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..

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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.

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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.

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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.

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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.

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

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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.

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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.

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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.

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

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

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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?”

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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.

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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.

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

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/freaking out.

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

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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.

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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.

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

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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.

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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.

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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.

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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.

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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.

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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.

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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.

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

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Wonder if this is going to happen after each treatment?

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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.

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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.

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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.”

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

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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.

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

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

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

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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.

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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.

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Just want to stop hurting and get some more sleep.

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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).

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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.

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

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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.

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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.

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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.

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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.

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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:

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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”?

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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.

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

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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

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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.

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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

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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.

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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.

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

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

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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.

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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.

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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.

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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.

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

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

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

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