Work

I was thinking about how weird it will be to go back to work when this is all over. Not just to MY job, assuming I still have one there by that time, but to ANY job.

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My life, and yes, even my work have been profoundly affected by this for more than a year now. When you factor in all the days I worked in excruciating pain, the mistakes I no doubt made, the changes that rolled out that I couldn’t even bother to pay attention to really, the days I probably should have stayed late but was absolutely physically unable to…

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And then since April 12th- I haven’t been there at all. In my industry that’s essentially 3 whole cycles of customers so far, to say nothing of the major structural changes that were being made to our way of handling business as I left.

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When I go back, someone (several someones actually) completely different (and relatively new) will have been handling my customers and my clients during the busiest and most stressful time of our, and their, business year. Can I even GO back to that?

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I think that Kris (and I won’t deny it… I am too) is kind of hoping that by the time I am cleared to go back to work, my FMLA period will have expired and there won’t even BE a place for me there. I have to admit, that neither of us are entirely opposed to me really and truly getting a FRESH start post-Cancer. There’s a part of me that disagrees with that idea… only because I spent 2 years at this company (the longest I’ve worked for a single company EVER, generally by no fault of my own), and I have really worked hard and made some major, MAJOR turnarounds with some of our biggest name clients. There are definitely companies that work with us, and started to finally increase the business they give us-becauseof me. I have one client that I am fairly sure is not sending us any moves right now. Because she hates our company- but loves me. (If I ever move to NJ… she’s even offered me a job. That won’t happen, I like TX too much).

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I am the one that gets handed the problem children. Which is funny because out of all of the folks that were there and arrived after me for a long time? I was the one with the least related experience. But I have a knack for people, and for figuring out what my clients really actually need. And then doing it. And being a human being about it. And that made a huge difference. There is an account that we have been on the verge of losing pretty much since 6 months after they signed with us. I not only saved the relationship, but we started receiving new (and returning had been gone) sub-clients from them.

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And there is a part of me that is so insanely proud of that and hates the thought of not having that opportunity anymore. I do, and would, miss my clients. Genuinely. Some of my accounts and the people I work with there, I have genuine affection for and already miss quite a bit.

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But on the other hand, this job is a bit torturous. That’s not really an exaggeration. The hours in the summer tend to range from 10-12-14. It’s a 24-7 job. It means having a dedicated (must be answered) cell phone, and a laptop that comes home on weekends.

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Sometimes it means not seeing friends or family because you have to leave an event to deal with a crisis. That’s just the way it is. And it sucks. The stress attached with this job is phenomenal… unhealthy even for someone like myself who has trouble leaving things unfinished and unresolved. Before I got sick I’d managed to find a kind of relatively decent balance with it all. But it didn’t change the fact that the job was having an effect on my stress and on my whole life really.

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Is that something I want to go back to?

Especially after all of this, seeing how important my LIFE and my sanity and my health really are?

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I don’t know the answer to that right now.

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I have known for… 6-8 years now that an office job is not where I will spend the rest of my working life. At some point, I will be able to live off of my photography- I know this. So the question becomes- do I go back (if I even can) and work until I can drum up the photography side of my career on the side and hope that doesn’t take another 5 years?

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Or: do I let this be a chance to really and truly start over? Do I not go back but instead… find something I can do from home feasibly. Find something where the hours are better regulated and don’t have the kind of out-of-office commitment that this does so that I HAVE the time to dedicate to becoming a better and better known photographer? Or… do I chuck it all for awhile and let Kris help me and focus all of my post-treatment energy on really building up my life as a photographer? Spending the time I would spend at a day job going out and shooting and getting my work OUT in the world where it can get seen and appreciated and ultimately— represented, marketed, and sold.

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I know once I can get back into the swing of my art fiscal stability is possible on just my art alone. I know what I’m capable of is good enough for that.

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The truth is… this may all be a moot point. I’m not precisely sure when my FMLAisup. I’m calling in to HR tomorrow to give them the latest update. But right now, my tentative back to work date is August 6th as per my Oncology Nurse. The sheer fact of the matter is- I may not have a job to go back to by then. And then it becomes a decision for me, and for Kris, and for my family who would no doubt have to be helpful and supportive of the downtime as to what route I take from there.

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I don’t know what the answer is.

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But either way… if I go one of the traditional “job” routes- it will be very weird to follow someone else’s rules again, and to not be in charge of my time anymore. The treatment schedule runs me for about an hour every day… 6-7 hours on Thursdays. But outside of that- I am limited only by my energy and the severity of the side effects. At the very least I have the time and access to write, to do small scale photography projects, to play games, to relax, to rest, to read and learn and participate in discussions and even arguments that I haven’t had the energy or time to do in the last 2 years that I’ve been with my company.

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And I have to admit, I kind of enjoy that freedom- who wouldn’t? I’d prefer that I had the energy to use this time to force myself out to take photos- but my body has other ideas about that right now. :shrug:

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Like I said, I don’t know what the answer is. It may get decided FOR me in the end.

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But either way, I’ll be ok. My future is bright and waiting. And I will get my Cancer-free bill of health, and I will do whatever I need to do to make that life worthwhile in a way I hadn’t before.

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In the meantime… I’m hoping this won’t be ANOTHER sleepless night. A 4 hour nap during chemo does not wipe out a completely sleepless night before. We’ll see.

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I am worth so much more than I believed I was when I took this job in 2010. My life is worth so much more. Maybe it’s time to put some faith in the universe and believe that this is making way and clearing a path for me to do what I’m really supposed to be doing. :shrug:

Rest

So Frustrating.

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You know the one bonus of being sick? Resting. Resting a LOT.

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But you know what I am incapable of doing? At night or otherwise? FUCKING RESTING.

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I AM SO GODDAMNED TIRED that I can barely breathe. But can I sleep? Nope. Not for me.

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I can’t even get in for a consultation with the sleep cllinic at UT until JULY 10TH. JULY 10TH. This has been going on for weeks. The double anxiety med combo didn’t work. The ambien + anxiety pill combo didn’t work. I am so fucking tired. I need something that will just knock me out. GIVE ME A FUCKING TRANQUILIZER. At this point, I’m actually kind of serious about that.

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I need. TO SLEEP.

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For more than just… a couple hours during chemo. I can’t DO this. I am having a hard enough time dealing with all of this shit without having to do it WITH insomnia. FUCK.

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You want the truth about all of this? The unadulterated truth? It fucking sucks.

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My body aches. My stomach is completely fucked up. I have almost zero appetite most of the time… except that when I do get hungry I get fucking ravenous, then when I get the food that I think will fill me up- I can only eat .. mm.. a third of it or else I know (from learning the hard way) that I will end up in pain because no matter how hungry I feel when I start? There is not enough room in my stomach for the food to fill how hungry I am. How fucked up is that? If I eat until the actual moment when I finally feel full- I will be completely fucking miserable within an hour.

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So I eat like once a day. Sometimes twice. Today I actually got lucky, had a burger, a chunk of watermelon, a banana pudding cup, and then dinner. But that… is super unusual.

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And I am so fucking exhuasted. Oh wait, did I say that already? I’m tired of feeling like my skin is crawling. I’m tired of being uncomfortable, I’m tired of it. I lived in constant pain for like a year. I DON’T FUCKING DESERVE THIS.

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And as if it isn’t fucking obnoxious ENOUGH to be me right now: I have a shit-ton of mosquito bites. Which normally would just be annoying- except my skin now HATES them with an unmatched fury. Which means that surrounding each bite I now have giant red blotches… even around the ones I’ve managed not to itch.

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Yes, this whole post is me bitching and complaining. Problem? Unfollow. I need a place to fucking complaining.

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FUCK THIS SHIT. I JUST WANT TO FUCKING SLEEP.

Still Awake

I have to be at UT at 7:30am for chemo.  I am STILL FUCKING AWAKE.
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Why?  Because once again I can’t get comfortable.  I’m hot, I’m cold, I’m nauseated…. but not quite.
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I can’t get into the sleep clinic until July 10th and I am not going to make it that fucking long.  I’m just not.  This is psychotic.  A “nap” during infusion is not going to be enough, it’s just not.  fuck.
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FUCK FUCK FUCK FUCK FUCK FUCK FUCK

Dear Cancer Center

Dear Cancer Center,

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I don’t know how to make this clearer. I am your patient. I have Uterine Cancer. I am doing daily radiation Monday through Friday. I am supposed to have Chemo every Thursday.

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I also have a severe (but until recently well-managed) anxiety disorder. It’s called, social anxiety. What that means (since the last nurse I told didn’t seem to get it) is that when it comes to new or newer experiences, when it comes to new routines, and new schedules, and new people: I need some structure. And I need some pre-planning. I need to know what is going to happen ahead of time. Or at least, what TIME it is going to happen.

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If things get changed last minute, or don’t get set up correct in the first place? I tend to flip out.

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I am supposed to have Chemo tomorrow. But NO ONE HAS TOLD ME WHAT FUCKING TIME TO BE THERE. I am also supposed to have radiation tomorrow. THAT is scheduled for 1pm. And now, it is SET at 1pm because no one ever called me back to tell me what time I should move it to so that it doesn’t interfere with my imaginary chemo appointment.

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I CANNOT DEAL WITH THIS.

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Cancer Center, you have to do better than this. Because I am freaking out. I am already a giant ball of anxious, and shit like this MAKES IT 10000% WORSE.

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Please call me back. Even though it’s after 5pm. Because I am about an inch away from a full blown panic attack and the worst part is I STILL DON’T FUCKING KNOW WHAT TIME I HAVE TO BE THERE TOMORROW.

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I need you to help me. If you want me to have a good blood pressure tomorrow, and you want me to have any chance of relaxing for my blood draw, or finding my port on the first try, I have to know what is going to happen and when.

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I do not have the energy for this panic attack. It could easily have been avoided. PLEASE HELP ME OUT.

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ffs you do this all day every day, it isn’t that damn hard!

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Sincerely,

Me. Having the panic attack. And still not knowing what time I have to be there TOMORROW.

Did Not

I did not call SuperTherapist today. I was going to. I told my Oncologist NP I was going to. I told Kris I was going to. I told Libby and Dad too.

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But I didn’t.

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I didn’t even get UP until 2pm. And I spent most of my day trying to pretend nothing is wrong. Except it is wrong.

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Everything is sore. Everything. Especially my lower abdomen. jesus. You’d think I’d done crunches except it’s not even like… exercise sore it’s like… sore and vaguely uncomfortable and I know that’s radiation related because they told me it would happen.

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My hair’s texture is completely weird. Like, overnight… totally different.

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I’m fucking exhuasted. My whole body is tired and even though I keep trying to power through it and ignore it, it’s just always there this… hit-by-a-train exhuastion.

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My port is so… present right now. There’s this one tiny corner from the incision that I am having to fight so hard not to pick at. Because the picker in me just wants to pick pick pick pick pick at any loose end and i’ve popped all my damn zits and itched open every mosquito bite which is a whole different level of annoyance.

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And I didn’t call SuperTherapist because I don’t know what to SAY. I don’t know. I don’t fucking know. Hey, so, I guess I should come in… even though I can’t pay you right now, and talk about having Cancer even though I don’t really know what to say about it, and about getting treatment which everyone already knows is going to suck so what is there really to talk about…

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But everyone says… you have to imagine that the medication is tigers in your blood, tearing at the cancer and destroying it. You have to imagine warriors in your blood. But it’s not… it’s poison. It’s poison in my body that kills the thing that tries to kill me except while it does that… it kills me a little too and if we’re lucky (and in my case odds are we will be).. if we’re lucky the Cancer will die before I do and everything will be right with the world except for the part that for the rest of my life I’m the girl who had Cancer.

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Which I suppose, is better than being the girl who died of Cancer.

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So what do I say to SuperTherapist? What am I supposed to talk about? Am I supposed to go in and shed all the fucking tears I can’t in front of other people? To bitch and whine and moan about how bad I have it when I know there are people who have it so much fucking worse?

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What can she do for me? What can anyone do but throw me another prescription to handle whatever side effect comes next?

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I’m not some tragic Cancer victim like you cry over in a fucking Jodi Picoult novel. I don’t deserve anyone’s pity. I’m not going to die from this. I mean, I’m probably not going to die from this. And my father asks the question I haven’t asked them yet: how do we know it’s done? How do we know it worked?

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But I try not to think about it. About what happens in 5 years if it comes back. What happens if we go merrily along thinking this worked but it moves and we don’t catch it again in time. Because how the fuck do we know? I had to fucking hemmorage in her office before they even found the tumor in the first place and that was after 3 physical exams and a D&C… so tell me… what’s the marker here? What is our tell-tale sign?

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Is this what I should be talking about? About how depressed I feel? How anxious? How fucking scared I am that for the rest of my life I’m going to have to constantly be worried that maybe it comes back and nobody can see it?

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And how does she help me with that exactly? Is she going to wave a magic wand and install some kind of… Cancer Detector? This is my Cancery-wancery detector, it goes ding when there’s stuff. I mean.. what am I supposed to do exactly?

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And at the end of the summer, when I (presumeably) get this clean bill of health… am I supposed to just… walk back into work (if they’ll have me) and pretend it didn’t happen? Pretend that I haven’t seen that I deserve better than that fucking stressful thankless job that ran my life before Cancer? Am I supposed to finish this up and then step back into all that stress for the next year? or 2? or 5? How the hell do I do that?

How do I pretend to give a shit if some executives car takes an extra day to get from NY to San Diego and don’t I know he can’t be seen in a rental at his new fancy job and I just finished fighting for my goddamn life and losing everything inside me that could have produced a living, breathing, person that I may or may not have wanted someday? And who gives a SHIT.

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I have a lot of anger these days. A lot of fear. A lot of uncertainty. And I’ve had 2 doses of radiation, and one dose of chemo and if this is what it’s like after 2 and 1 then jesus… 5 weeks later is going to be absolute shit.

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It’s all well and good and powerful and hopeful when it’s fucking theoretical. But it’s not that many steps from… oh my hair’s different… to oh my hair’s gone. And maybe this is what I should be talking about with SuperTherapist except I can’t seem to bring myself to pick up the phone.

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And when people ask how I am I want to scream, “I HAVE FUCKING CANCER AND IT SUCKS HOW THE FUCK DO YOU THINK I AM” but instead I just say, “fine, it’s fine, I’m going to be fine.” Except I don’t even know what that word means anymore and at least when I was fucked up in the head I felt like I had some control but my body doesn’t LISTEN to me anymore. And even if I plow on through and make it through dinner… there’s still me dead asleep on the ride home and blazed awake at night when I should be sleeping because my second winds keep coming to me at the wrong times and they’re too goddamn short anyway to be of much use to begin with.

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And I’m torn between telling the truth, and keeping up the lie that everything is fine. Because I don’t want people to think… oh it’s no big deal… but I don’t want their Cancer-Pity either and I don’t know how to draw that line without screaming and I just want so desperately to go to bed and have someone just wake me up when it’s over. Just wake me up when my life can start again ok? My body can fight Cancer on it’s own and I’ll just be here sleeping so wake me up when it’s ready… I’m changing my name to Aurora and I’ll be here in this tower waiting so just send a pretty girl my way and tell her to kiss me awake when she’s done fighting my Maleficent.

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I want to be sleeping beauty, and prick my finger with a chemo stick and sleep while it fights without me, rest while around me everything else is in turmoil and just wake up for the hero’s entrance at the end. Let my heroine wake me with a kiss and I will figure out how to deal with my changed body, and my tired limbs, and my poisoned blood and as long as I don’t have to do the fighting it will all be ok.

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Call me Aurora and sing me a lullabye and when I wake up drain the poison from my blood and pour it into an apple for another fairy tale. I just want to sleep until it’s over, and then I can start again.

2 Years

When I was waiting to go back for the xrays on Tuesday, there were women coming and going to their own treatments in the “dressing area.” And one of the women as I was finally leaving started chatting with me, which was unfortunate for her because I’m awkward as hell, even worse when I’m as anxious as I was.

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But she asked what “round” I was on and I said that I hadn’t actually started and wouldn’t until Thursday. She said she had been doing radiation for 2 years.

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Two. Years.

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And even though I’m relatively certain this is not a 2 year thing for me… I think that was the first time that it really clicked in my head how bad this is. How bad it could have been. Tonight, I made the mistake of googling cisplatin which is the chemo I’ll be getting starting at 9am today. I watched a couple of videos, looked through some terrifying photos and read a couple of people’s blog posts about receiving it as treatment. Most of the posts I found were more side-effect focused, but nonetheless all I’ve really managed to do is re-affirm just how incredibly serious this whole Cancer thing is about to get.

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You’d think the hemorrhaging in the Oncologists office would have done it… or the hysterectomy, or the infection, or even the port implant. But no. It was some random stranger confessing she was in year 2 of her radiation treatment.

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I don’t know what kind of Cancer she has, or how widespread it was, or what else they’ve done for her. But hearing 2 years… broke me in a whole different way for some reason. And for the first time I am really not sure if I am actually strong enough to do this.

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I know people will fire back, “of course you are,” and “you are, you know it” and “you’ve got this beat,” and I love the confidence, and I say it often too, even now. But honestly ever since Tuesday, in this very small, very quiet but very… pervasive part of my mind all I can think is, “I can’t do this.” Because I am just so very incredibly scared.

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I’ve lived through my share of shit, more than my share really as those in the know will readily agree. I fought hard to get to this unbroken space in my head and in my heart. And if I’m honest, if I’m reallyreallyhonest… when that woman told me she’d been doing this for 2 years… there was a piece of me that broke again. In 5 and a half weeks this should all (presumably) be pretty much over. In 8 weeks it should be completely done. But I’ve said should before in this journey and shoulds haven’t really worked out that well in practice for me this year.

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I’ll fight it because I have to. I’ll fight it because I have no other choice. I’ll fight it because I’m not interested in laying down and giving up the life that I have already fought so hard to achieve.

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But if I’m really really honest… right this second, right now… there is a big broken piece of me that half-believes it won’t work. And I am more terrified of that than of anything else in my entire life. Because what if I just don’t have enough battles left in me? What if I’m just… done?

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What if it doesn’t work?

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Could I go through it all again? Could I be the woman in the room fighting for two years?

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No. In all honesty, I don’t think I could.

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So what if it doesn’t work?

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See. I told you.

Broken.

And now for something...

A little more serious.

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So today was what I thought was going to be radiation day 1, but ended up just being a shit-ton of xrays to finalize the line up and markings for treatment which starts on Thursday with my Chemo.

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But because it was x-rays and done through the radiation department I kind of got the walk-through for what the process will be for radiation on Thursday. They came upstairs to get me after check in but Thursday I just check in and go right downstairs to the changing area. I put on 2 gowns (so my butt is covered) and then wait in the little dressing area chairs until they come to get me.

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And I feel like maybe I need a button or a sign or something that says, “I’m not rude, I’m just really introverted, I have social anxiety, and I have no idea how to talk to people.” Because like… 2 different women tried talking to me and I just like… shut down. I tried to be polite but at the same time (I still thought radiation was starting at that point) my head was completely reeling with all the scared and anxious and lack of sleep.

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These women joked and laughed and asked each other questions and I just sat there with my awkward pants on and tried not to freak out. One woman (probably in her… late 50s to maybe mid 60s … I suck at guessing people’s ages) looked at my head and said, “Oh you’re hair is coming back in really nicely!” and I just blurted out, “Oh, I just cut it way down a few weeks ago… I don’t really start anything until Thursday so…” but it just felt so … I don’t know.

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All of the women I saw today were at LEAST 15-20 years (or more) older than I am. And I just felt like a fucking baby sitting there.. gutted like many of them probably are… scared and uninformed and completely useless socially besides.

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And one woman was asking about my course of treatment and was talking about how she’d been doing this for 2 years. TWO. YEAAAAARS.

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I didn’t even know what to say I just… nodded politely and continued heading on my way. I just… :deep breath:.

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But seriously, I need a sign to put around my neck that just says… “give me time, I’ll warm up.. but right now I’m scared and anxious and overwhelmed and trying to talk to even 1 person I don’t know is way over my threshold so please respect my silence.”

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I will be putting together my chemo bag tomorrow with this kind of interaction in mind because from what I understand I will basically be in a room with several other strangers for like… 5-6 hours on Thursday and while I may be able to untie my tongue by.. hour 4 or so… the start of all of this so not goign to be a social hour for me, there is no way I can handle that.

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I bought headphones, and I’ll bring my laptop and my e-reader and the plug for my phone charger so I can listen to music on it. Hopefully people will just… understand and not push me on trying to socialize the first couple of sessions. I am so at my limit right now. Honestly, I almost freaked out just dealing with the radiation techs today and I barely had much interaction at all outside of a few instructions and tips and then being told to keep holding still.

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But seriously, right now my big nightmare isn’t even the chemo infusion itself, it’s sitting in a room with a bunch of people I don’t know and being like… ushered into the Cancer-Chemo Community before I can process it all my own way.

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Lots to process right now. blegh.

Mental Math

I just looked at my treatment calendar (the radiation one, since I don’t have my chemo calendar until Thursday) and realized that I should finish the major chunk of treatment right before my birthday on August 4th.

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I’ll still have 3 1x a week chemo infusions after that but the big ugly scary stuff will be done just before I turn 31. Last year for my birthday I wanted to celebrate big because I’d made it to 30 and everything was so great and my friends honestly… sort of let me down.

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But this year… I think this year I’m going to put together a Birthday Event. I’ll sit down with Kris mid-July and maybe try to come up with something really amazing to do. Because after all of this shit… I deserve it.

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That is of course on the assumption that I only need one “round” of all of this and I don’t suddenly find out it’s suppose to be 2 rounds or 3 or whatever. But for now, I like this plan. Yes. It’s good.

Unknowns

I start radiation tomorrow.

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I start Chemo on Thursday.

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I am trying very hard not to be terrified but my anxiety disorder is NOT helping right now.

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I used to have debilitating social anxiety. To the point that there have been extended periods in my life where school and/or work were actually impossible for me. In fact when I left college it was because of my anxiety disorder. I’ve not been back and that was almost 10 years ago now.

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In the last couple of years I’ve really worked hard to get a handle on my anxiety and to be able to manage it mostly on my own: no meds, minimal therapy. Not that there’s anything wrong with meds or therapy, I just personally prefer not to use them if I can avoid it. (I suck at remembering to take pills for one thing). So the fact that I’ve been in my position at work long enough to be offered a promotion, to have been given new accounts, to have been trusted with high-profile clients and situations is really amazing. To say nothing of the social life that I was enjoying thoroughly before I got sick.

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But there is so much unknown for me with Cancer, and treatment, and all of this. New people, new doctors, new places, new situations, new experiences. And I am completely overwhelmed. I’ve been hiding out at home a lot trying to minimize my exposure, which is one of the tricks I used early on my anxiety recovery. But tomorrow I start radiation. Thursday I start Chemo. And so not only am I dealing with all the heavy emotional and physical crap that goes along with all of that anyway, I am also trying desperately to reign in my anxiety over situations I’m unfamiliar with. With the realization that I will likely not be the only Cancer patient having Chemo on Thursday. New experiences, new people, new places. And a lower-than-average tolerance for all of the above as it is.

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I bought headphones today when I got groceries, just some cheap ones, so I can take my laptop/phone and listen to music or watch a movie if I start to get overwhelmed… but I am so incredibly anxious about all of this. And it’s been a long time since I’ve lived with that in the pit of my stomach this way. Now I remember why I worked so hard to move past it. But of course, this is not your average situation and some of my old tricks aren’t as effective as they once were.

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I know I’ll be fine, and in a week, maybe 2, it’ll all be old hat to me. But I am still scared and anxious and wanting to run away.

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Of course it doesn’t help that I probably will not be back at work before my 12 week FMLA is up and I will be stuck looking for another job which is a major source of anxiety for me at any time. Couple the regular anxiety about new places, people, experiences with having to learn new skills under scrutiny. :blegh:

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Trying not to worry about that too much until I have to because.. one day at a time and all that embroidered-on-a-pillow shit.

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Anyway… I guess this is just a post acknowledging my own fears because I feel like I haven’t really be honest with myself about some of my really underlying issues with all of this and it’s not helping me deal or get over them to just stuff them like they don’t exist.

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:sigh: Aren’t you glad you wasted your time reading all this? Sorry ‘bout that. Carry on.

Some Thoughts

So, I have completely lost track of the date. And thankfully Kris actually opened my car statement this week because I had completely and totally lost track of what day it is and I didn’t make the payment on the 15th (not that I actually have it right now anyway but still). Anyway, instead of making this months payment, she’s going to just pay it off completely (I have it paid it down to under $5g but instead of trying to make a payment each month for the next year (since it’s quite possible I’ll be unemployed by the time I’m done with treatment… during which I don’t get a paycheck anyway)… she said I shouldn’t have to expend energy stressing about how to make that payment every month.

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She said she wants me to be able to focus completely on getting better. That I need one less thing to worry about. I was floored and so grateful. I meant to call them anyway and ask if I could get a 10 day extension this month anyway, but now I just call and ask about the payoff amount and then when I’m back on my feet… I pay her instead of them.

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Sometimes I get completely overwhelmed by the things she does and offers. Not surprised necessarily- because this is totally something fairly… typical for her. She’s got easily the most generous spirit of anyone I’ve ever met… and thinks of me and treats me as though I were her daughter. I’m glad to have this off my plate for now. But I look forward to being able to pay her back over the next year. Hopefully if my job DOES go away before I get back.. I’ll find something comparable (or better) and be able to repay her quickly.

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And in related news: I start treatment this week. :exhale:

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I don’t really know how to feel. I’ve talked before about how different it is to be right up against the start of it all vs how theoretical it all was just a week ago. The port, the pain, the appointments in my Cancer Chart site… it’s really happening now. In a way I’m glad to get started. “Sooner started, sooner done.” But mostly, I am scared.

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My friend Dani (Cancer-Sister extraordinaire) posted on FB today about starting her treatment tomorrow. What she said rang so true to me today as I count down the days to my own treatment starting: “I know I’m going to finish the battle on top but that doesn’t take away the fear. The anxiety and all the sad and bad feelings that come with it. I appreciate the support but I’d like for you all to acknowledge that this is so much more. I know i am going to be fine, i know that. right now i think it’s best for me to realize that i am not ok and be ok with that because if i don’t i think i will explode.”

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I think there are some times when ind words, while well intentioned, tend to gloss over the fact that something really HUGE is happening here, in my life, in my heart, in my own little battleground body. And as much as I have appreciated friends and family constantly touting “You’ll be ok, everything is going to be ok” sometimes what I need to hear is… “shit this is scary.” Honestly. I know that seems strange but it’s the truth.

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Some days are like that.

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Right now all I can do is take it easy. One day at a time. And then deal with treatment when it’s my turn. Learn to navigate that the way I’ve learned to navigate everything else that’s come with this diagnosis.

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and in the meantime… I rest. I try to keep my mind clear and my worries minimal. And thankfully I have the support to do that.

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Tomorrow I call the car company and get the payoff amount. I call the radiation office to get my radiation schedule. And I try to prepare myself for Tuesday, for Thursday, for the next 5 and a half weeks of my life.

Pain

Port pain is finally on the mend. Took off the plastic tape/bandage (giant plastic sticky seal they put over the whole area) and that I think actually helped a lot. Judging by how red my skin was once it was off… and the better range of motion I have… I think the tautness (and the fact that my skin HATES that stuff) may have been contributing to a lot of the discomfort.

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Ra’s advice about alternating the norco (thank GOD I had some leftover 5-500) with the ibuprofen seems to be helping too… and at her demand, I’ve been taking it a lot easier than I was originally inclined to. Which has meant getting a lot of rest and staying fairly immobile as much as I can stand. And staying home, quiet too. Thank god for best friends who are in med school.

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Other than that… Radiation and Chemo start next week. Nervous. More nervous than I care to admit really. Throughout all of this treatment itself has felt very… theoretical to me. The fact that I have a port for chemo, and markers for radiation, and stickers for lining up the radiation and starting appointments is making it all so much more real. I’ll be honest- I’m having a hard time accepting it all- dealing with it.

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I keep joking with Kris whenever we go up to UT… “It’s not too late to head for Aruba.” I know this was the right decision, and I know my treatment choice is the best for me for my Cancer… but there is still this piece of the OLD me- the broken one, the one who couldn’t face anything- deep inside that keeps screaming, “RUN.”

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I guess I should probably make another therapy appointment for next week or the week after. But I don’t know what to say. And I don’t know what I’d need her to say. Half the time I think I want people to tell me everything will be fine, and not to worry, and it’s going to be ok. And half the time I think I’ll scream if someone doesn’t just come out and say, “this sucks and you shouldn’t have to do this and it’s not fair.” And then… on top of all of it I don’t want people to say anything at all. And everything everyone says is wrong and stupid and none of it makes me feel any better… except that people reaching out to me in love does make me feel better- even if their specific words don’t.

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I was supposed to remove that bandage and shower today but I got too scared. I took the bandage off but never made it to the shower. I never thought I’d be the kind of person who was afraid of physical pain. All those years of cutting and now I’m afraid of pain. Ironic.

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:sigh: Sometimes when I sit and think about everything I feel so old. And sometimes it makes me feel so young, immature, unprepared. I want to put so much of what I talk about here on FB but I don’t. Because young, old, whatever— I still feel like I need to protect the people I love from the full force of what I’m feeling about all of this. Isn’t it enough that I’m scared and sad and anxious without everyone else having to deal with that too— when they’re dealing with their own scared and sad and anxious about it all already?

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My therapist would slap my wrist for that (metaphorically of course). She’d say I should trust people to set their own boundaries, and that I should go with my instinct to reach out and let people in so they can help me, soothe me, support me.

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She’d say that I need to stop worrying so much about other people and start focusing on what I need from them in order to make it through all of this. She’d tell me it’s time to be a little bit selfish.

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I’ve never been very good at that though. Putting myself first. But maybe she’s right to an extent. Maybe I need to be asking more and setting my OWN boundaries. People can’t give me what I need if I don’t tell them right?

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I guess the real problem is… it’s easier to try and protect everyone else than to try and figure out what it is that I really need.

2:50am

And basically all I’ve done since I woke up from a nap around 5pm is cry, take 4 Norco (4 hours between each dose of 2 pills), and try to distract myself.

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But at no point has my pain gone below a 7 on the pain scale. Mostly… depending on how I move… 8-9.

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I’m really really unhappy. I know it’s logical for it to hurt at the port site, but is it normal to hurt this much?

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I have to call the Oncologist in the morning and see if there’s something else I can take. I can’t handle this. When I’m admitted to the hospital, my pain-threshold number on file is 3 or 4. This is fucking ridiculous.

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I’m not used to being in this much pain anymore (although I keep trying to remind myself that pre-diagnosis I used to WORK at a 6+ on an almost daily basis). It just fucking hurts.

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I keep saying over and over again… it’s worth it, it’s worth it, it’s worth it. If it means they don’t have to stick me 5billion times every time I have Chemo… or put an IV line at my knuckle, or blow out 5 veins trying to get it in. But jesus h christ I am seriously wussing out over this pain. I can’t deal with this shit. Seriously. How did they NOT give me something more significant for when I got home with this shit?

7 hours

insomnia + headache + exhuastion +hot flash + anxiety + surgery in 7 hours = ugly crying

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right this second… I am not ok.

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I have never in my life wanted to run away from something so much as I want to run away from all of this.

Self-Care Self-Portrait

Self-Care Self-Portrait:
Day 1: June 11th, 2012
I needed to do something radical tonight. I made a point to read a post about chemo by one of the Cancer Survivor blogs I follow which turned out to be a mistake because it set off quite the emotional spiral.

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I’ve wanted for awhile to do this sort of… face-spam as self-care. So many of the fatabulous body-positive bloggers I follow have done so and I’ve always admired their confidence.

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I decided last week that I really want to do an actual self-portrait project throughout my treatment. It’ll take a little work I have to figure out and set up a space in my room for it (including a mirror). And figure out the mechanics (my camera’s timer and focus don’t get along well with me).

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But for tonight, I still needed something radical (for me) to soothe me.

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So, I focused on my tattoo, my face, and used my phone camera.. importing the shots I liked to instagram and adding filters from there.

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The middle one I actually took last week while trying to explain my project vision to another photographer friend. They’re not spectacular. Photographically speaking they’re not even that good. But they are… radical. For me.

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Because I have always shyed away from portraits of myself. The only photo of myself I ever really resonated with was a self-portrait I took in a mirrored mosaic at the fair one year. Most of my face is hidden behind my camera. But in these shots, simple as they are… I feel strong. Confident. Beautiful. Feminine even. Not a descriptor I use that much about myself.

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And there is fear in them too. Uncertainty. Anxiety about the coming weeks. There aren’t many smiles. But there is ME. With round cheeks, multiple chins… and that frakking tattoo. “Infinite Strength.” I didn’t realize when I got it back in February… how much and how desperately I would need that little reminder.

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So this is the start. For tonight: this was crucial self-care. My face, my tattoo, my short-cropped hair. Seeing myself over and over, setting up each shot, editing, posting, watching myself. And realizing how much and how infinitely I’ve come to love the person I see in the mirror.

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This is me. Learning a new way to take care of me.

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Radical Self Love.

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Envisioned.

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Created.

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Seen.

1 Day at a Time

I am so nervous about next week. Tuesday: follow up with Dr. Kehoe… which I’m NOT nervous about of course because I always feel better after talking to her.

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But Wednesday my port goes in and I am fucking terrified about that. Should be about a 4 hour thing from checkin to check out from what I understand but ugh… I am nervous because incisions and a port to have in me constantly for the next what… 2 months?

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Libbeth wants to fly me to Eugene for the few days before I start treatment as a treat. Part of me really WANTS to go (if I’m even allowed to fly) but I don’t know what the rules will be once that port goes in. We’ll see.

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She might be able to come down and be here for the first few days of treatment though which I think would probably be a really good thing.

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:sigh:

I need to go back to doing the whole.. one day at a time thing: it’s just that sometimes… 2 or 3 or 4 of them gang up on me all at once.

Sometimes

Honestly, sometimes I feel so stupid complaining. I mean, the truth is… it could be so so so much worse.

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But we’ve spent all this time, all these steps functioning on this… “best case scenario” philosophy. And while I recognize that even when things haven’t gone according to the best case we planned for, they could have gone so much worse… we keep missing the best-case ending.

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And I am scared. And tired. And frustrated. And knowing that it could be so much worse, doesn’t make it feel any better.

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And even though today was a better day, at night, when it gets quiet, and I can’t distract myself anymore. I am scared. Of everything that’s coming up. The port, chemo, radiation. I’m even scared to lose the peachfuzz on my head.

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I’m not ready for all this.

Sleep + Stuff

So tonight we’re trying the new med combo for sleep.

1 Norco

1 Ativan

1 Paxil

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I remain skeptical but jesus if it helps me actually sleep I will be so so glad.

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Had a much better day really.. physically. Incision is almost completely healed, and for part of the day I felt practically peppy.

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Exhausted now though. Part of the problem is my head (although thank GOD my nausea has been almost non-existant today) is POUNDING. I’m honestly not sure how much is glasses (my new ones should be in next week) or the fact that I am STILL really really clenching my teeth/jaw most of the time.

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I broke down and cried at one point and then all of sudden my headache cleared up and my jaw relaxed, but I can’t just sit here and cry all the time that’s impractical,at best.

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Have you ever TRIED to “relax” your jaw… but constantly. I’m usually so oblivious to my mouth/jaw that trying to figure out the best way to… hold it, is fucking ridiculous.

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I have to figure something out though because the tension and the headache it’s producing is horrifying.

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I’m grateful that most of the day was better though. Glad for small favors I suppose.

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Trying not to think too much about next week. Oncology Apt. Tuesday morning, radiation “simulation” the same afternoon, and then Wednesday my port goes in. Nervous about that. Hence… trying not to think about it.

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But today at least, today was a little better.

Honest

If I let myself be really honest… I try really hard not to lean too heavily on anyone. Partly because I know this could be so much worse than it is… And partly because I am genuinely afraid about all of this. Cancer, symptoms, treatment.

Sometimes it feels completely overwhelming.

Right now it feels completely overwhelming.

I’m tired and nauseated and in pain and having one of those moments when what’s coming up is really terrifying. Annnnnd there’s the tears.

Better to cry than stuff it down says supertherapist so maybe.. maybe ill be able to just cry myself to sleep. That’d be better than lying awake all night. Right?

Admissions

Therapy today. thank God.

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I don’t call her “SuperTherapist” for nothing. I’m so grateful she squeezed me in today… and as always the question as she takes my card, “are you ok today or am I taking your grocery money.” A therapist who still treats… even on the off chance you can’t afford to pay her that week.

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Had a good talk. Need to work on working through my emotions… (what else is new). A lot of the challenge I have with the Cancer stuff is that i have a really hard time accepting that I don’t have any control. Not really. For years, even at my worst, I always knew that when you boiled it down— I could get control over my emotional issues, over my anxiety, my depression. I knew I’d need help to do it, but ultimately that it was something I would actually control.

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But this? I can’t control this. My body is going to change, I’m already dealing with nausea, dizziness… sleep issues. I can’t control it. They can mitigate it: with medication ultimately… a lot of it at least.

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And the thing I hadn’t said out loud before…

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Ever since this all started we’ve functioned on this… “best case scenario” basis.

-They’ll figure out what’s wrong and fix it.

-oh.. well, it’s Cancer.

-We’ll hook you up with an amazing Oncologist

-oh… well, there’s a giant tumor btw.

-Surgery. We’ll do a hysterectomy and then it’ll be all over, in fact, we’ll do it robotically, easy peasy.

-except the tumor’s too big so here’s your incision.

-Let it heal, it’ll be fine

-except there’s an abcess and an infection, enjoy your wound-vac.

- So, hysterectomy and it’s over right?

-except one of the lymph nodes came back Cancer positive… so treatment is
necessary

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And I know, the prognosis is good, excellent even. And 95% of the time I feel really confident (if a bit nervous and scared) about it all. But 5% of me looks back and says… that whole “best case scenario” thing hasn’t really panned out so far… And I don’t want to die.

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And I know that seems like a leap when you’re not in my head. But it’s there.. small, quiet, minimal— but there.

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I spent so much time putting off my life. Not really doing anything… honestly— suicidal for most of it. And now I really really want to live… and :boom: Cancer.

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It will be ok. It will. I believe that.

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Except when it’s really really late, and I can’t sleep, and it’s dark and I’m tired and that little tiny 5% starts whispering… “but maybe.”

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:sigh:

So that’s my honesty for today. Aren’t you glad you read all that?

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:deep breath:

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S’gonna be ok. I know it.

Supertherapist

I don’t have regular therapy sessions anymore although I may set up sessions every other week once treatment starts. I did maange to get a squeeze in with SuperTherapist on Thursday.

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Which is good, because I definitely need a chance to get down and dirty and honest about all my… Cancer Feels.

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The only problem is because I see her so rarely, I always spend my random sessions talking about the good things, because part of me wants my therapist to be proud of me.. heh, I can’t help it… it’s the people-pleaser in me.

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But I need to really TALK to her. Because I may lose it if I don’t. I try, as much as possible to keep a positive, everything will be fine, no big deal front up as much as I can. Even the complaints that do get to the blog, or to my friends and family are pretty … surface really. My nausea, my tiredness. But the truth is I am terrified of this, all of it. Hell, I’m still terrified of my incision and it’s almost fully healed now.

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I live in a constant state of fear and anxiety and as much as I try to hide it, I honestly, truly, do not know how to deal with Having Cancer. I just fucking don’t. I’m not dealing with it. The closest I’ve come to dealing with it directly was to get my head almost shaved. And even that I turned into a party— so I wouldn’t have to sit and cry while it was happening.

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As much of a “brave” face as I put on day to day, I don’t know how to handle this I just don’t.

Today

Today was really great. So amazing to be surrounded by so much love and support.

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Unfortunately, I did not sleep well last night and tonight looks to be following the same pattern.

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Just spent about 30 minutes sobbing. Ugly, can’t breathe, please kill me, sobbing. I am so fucking tired.

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And of course, I’m nauseated again because I’m constipated. (Fuck the read-more… if you don’t want this kind of honesty, unfollow).

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I am actually desperate and nauseated enough tonight that I would actually take the Colace… except that I left it at mom’s. :headdesk:

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Really really really tempted to take a 2nd ambien. I just… I can’t handle lying awake for a 2nd (well, really 3rd.. maybe 4th) night in a row. I can’t. I’m exhausted.

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I hate this.

Big Buzz

Oncologist Day

Ok so, today was Oncologist Day. The good news: Wound-Vac is OUT. She was very happy with the progress of my incision and although she was a little on the fence about maybe leaving it in for another week, ultimately she decided to take it out. I still have a hole in my belly which is SUPER disconcerting, but now it’s packed with gauze and covered with 4x4 gauze packs and tape. I see her again week after

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next to check its progress.

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Now… as for treatment. :deep breath:

I have to stop and say that I LOVE my oncologist. And all of her staff. They are honest, forthright, empathetic, and don’t treat me like an idiot. She recognizes that I do have SOME knowledge about what’s happening and speaks to me with respect and dignity that I’ve had a hard time finding at other physicians.

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We talked for a long time, her, her nurse, my mom and grandmother and I. We talked about the trial, and treatment options outside the trial. Ultimately the decision was really mine. I would love (really) to be part of the study. I would. But there is no guarantee I would end up in the group that gets both Chemo AND Radiation. And to be honest, after talking to all the Doctors and my family and doing my own research, I just feel like if I don’t do BOTH now, I may regret it later. At least this way, if the Cancer DOES come back… I can say I really did try everything right off the bat.

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So here’s the plan:

I will have an appointment at the radiation office next week to do all the pre-screenings (CT etc). I’ll get a call to schedule a day surgery to put in a port at my clavicle for the chemo. It makes it easier than having to find a vein every time. Once the Port is in, we’ll start the whole treatment process on the next Monday (probably week after next or the week after).

Then the schedule goes as follows:

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Day 1: Chemo and Radiation (5-6 hour day up at the Cancer center)

Day 2-5: Radiation (about an hour a day).

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Lather, rinse, repeat 5 days a week for 5 weeks. Then, 1 round of chemo a week for 3 weeks.

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Presumably at that point, I get the all clear.

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Confirmed side effects:

-Exhaustion

-Likely Nausea (I’ll get meds to mitigate that)

-Likely Diarrhea. The nurse said one of the “benefits” of doing both treatments simultaneously… the Radiation causes diarrhea, the chemo causes constipation… she said a lot of patients luck out and the two cancel each other out so you don’t have to worry about it at all

-Hair Loss. It’s going to happen. Now, Sunday I’m buzzing my hair already so that shouldn’t be as traumatic as it could be. But as a bonus, she did say ALL of my hair would come out… leg hair, pubes, everything. I’m going to call this a win for personal grooming although most people consider it a lose on side effects.

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All in all it could be so so much worse. I’m not thrilled about the port, but I am if it makes it easier to do the treatment. In all honestly, I just… I want it to be over. The sooner we can start, the sooner I can be done.

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In the meantime, I still need help… if you haven’t and you CAN (and I don’t expect any of you to be able to or to feel obligated to) please consider donating to my Cancer Fund. It may be a few weeks before my insurance comes through and there are bills to pay in the meantime. So far I’m almost covered for next month thanks to people’s generosity… but every little bit helps.

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Once I have a chance, I’ll do another photo post of my progress Belly-wise. I can’t even describe how much that helped me… to say nothing of everyone’s positivity and support thereafter.

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Sorry to put so much of the “Cancer Crap” here… but I know a lot of you want ot know but aren’t following my actual Cancer Blog so I wanted to be sure the folks that wanted to know saw the latest.

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Love to you all, and remember to LOVE YOURSELVES.

Over

Tomorrow is my appointment with the Oncologist and as much as I’ve tried to kind of avoid thinking about it, I am very nervous.

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Most likely they’ll remove the wound vac which is a good thing, except it still seems really… big to me (compared to anything I’ve had before of course) and I’m anxious about tending to it without the wound-vac.

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Plus, I think it’s time for the serious discussion about treatment which terrifies me completely. I know it’s necessary, I know that ultimately it’s a good thing, but I am terrified. I don’t know how to handle it… still.

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I think in my head I am still stuck in… “surgery will fix it,” and I haven’t been able to really wrap my head around the fact that it didn’t, that there’s more that’s necessary now. I don’t want to do this, and I don’t want to have this discussion but there aren’t any other options.

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At least I might get to go HOME home soon. I love my family, but it will be nice to be back home… in my home. Where I’m comfortable and more free.

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I just want it to all be OVER you know? I know people will not agree with this… but sometimes I just don’t think I have it in me to DO all of this. I just don’t know.

Stomach

Tonight I threw up for the first time since I’ve been sick. And it was gross and I did not make it to the bathroom which meant it was fun for everyone. But the thing is, after my stomach calmed down all I could do was sit in the bathroom and bawl. Because this honestly, is one of my greatest fears about chemo.

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I know that one of the major and pervasive side affects is nausea/vomiting. And I hate, hate hate… throwing up. Like, more than normal people even. I have in my life gone years without vomiting. I’ll do pretty much anything I can to avoid it. To extremes.

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So the knowledge that I’m getting ready to start a regimen of drugs that are known to have vomiting as a side effect. So I just… got overwhelmed again by what’s coming and sat and cried. Because I don’t want to do this. I just want to go back to my life.

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But I also don’t want to die. So I don’t really have a choice. But that doesn’t mean I have to like it. :sigh:

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This has been mostly… just… bitching. Sorry for the interruption.

Stop

Family will be home soon… that means I need to stop crying now. Stop crying Sarah. STOPIT.

One of Those Days

Having one of those days where I just feel wrong, and my skin crawls and all I can think about is Cancer.

I’m out of my pain pills, and for some reason today my depression is ridiculously intense. Fortunately everyone’s off picking up my Brother’s best friend so I have the house to myself so I can just… bawl if I need to.

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I don’t get this very often. Usually I’m pretty… ok, stable even. But some days I just get overwhelmed. Today I’m overwhelmed.

Flabbergasted

I am honestly flabbergasted at … today. When I got up this morning and started to really think about the coming months, when I sat down and did the math, I got scared. I’m not good at asking for help, especially when it comes to money. My family and Kris have already done so so much (my family has been buying my prescriptions, and Kris just… takes care of anything that comes to the house right now), I just couldn’t fathom sitting down and saying… next month- I will need more help. I will need money.

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So I got up, and I researched, and I thought about all the times I’ve seen “Donate to so and so, or if you have a dollar, donate here…” so I researched and I googled and I set up my GoFundMe page. And I thought long and hard about sharing it. On tumblr, on twitter- especially on FB.

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But something Kris said to me a long time ago popped into my head, “If you DON’T ask, you definitely won’t get what you need.” So I did it. I shared it here first, then twitter… then (after hiding the note from my family) on FB.

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And although I do have one person I know who donated, most of what’s come in so far has been from people I either haven’t met, or don’t know at all. And in one day’s time— I have enough there to at least pay my car insurance next month.

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Because of strangers.

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Sometimes I get overwhelmed. By everything I’m dealing with. My skin crawls sometimes, knowing that Cancer is still… inside me, fighting me. Some days I feel like I can hardly breathe, thinking about everything that’s ahead of me.

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And sometimes… people remind me that Cancer and pain and fear are not all that’s ahead of me. There is still so much kindness and generosity and love surrounding me that even complete strangers are willing to support me, to be there, to prop me up and remind me that there is hope.

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Flabbergasted.

GoFundMe

I realized last night that in a week or two… I’m going to have a situation on my hands. Financially speaking. My savings is running out. And because I’m on FMLA, even though my insurance is still active (thank God)… I don’t exactly have money coming in right now.

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I thought about boosting my etsy shop but I’m not in a position right now to be running out to the printer and post for each order, and even once I am… it’ll be Chemo time and I doubt I’ll have the gumption to get up and do that after 5 days of chemo a week for 5 weeks… to say nothing of the radiation.

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So I looked online at some personal fundraising options and ended up at GoFundMe.com.

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I set up a page, and although I know most of my followers probably can’t afford to help, and I don’t expect anyone to, I figured why not give the link and see what happens.

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The truth is… by the time I can go back to work- there’s a very real possibility I won’t have a job there anymore. I still have a $4000 bill from my original diagnostic surgery, to say nothing of car payments, insurance, phone, etc that still have to be paid in the meantime.

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I’ve got one more month’s of bills payable with the money I have now, and then I’m screwed.

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So… if you CAN help… I can’t tell you how much I’d appreciate it. And if you can’t— signal boost? The truth is if I end up getting nothing, I will be neither surprised nor disappointed. But I figure it can’t hurt to put the option out to the world and see what happens.

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I have such an amazing support team emotionally to help deal with Chemo and Cancer and all of that… but I don’t want to have to ask them to pay my bills too. I’m 30 years old and I’m not ready to start drowning yet.

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If you have a buck to spare… or even if all you do is spread the word— I can’t tell you how much that could mean to me. I don’t want to have to spend the rest of my life trying to make up for having Cancer at age 30.

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The link to my fundraising page is: http://www.gofundme.com/ozgh4

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They take paypal, wepay, and cc payments (I believe). They don’t charge you anything to donate. I put my initial goal as $5,000… that pays off the prior medical bill, and takes care of about another month and a half of bills too… but any money I raise will be used in that way. For necessities, for medical bills, for other bills while I’m out of work.

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Thank you for taking the time to read this. Even if you don’t donate (like I said, I know most of my followers probably can’t afford to and that is totally ok and I love you all just as much anyway).

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Incision

I’ll be honest, I’m nervous about what happens when the wound-vac comes out. I mean, don’t get me wrong… I can’t WAIT for it to come out. I can’t wait to turn in bed at night without having to wake up and make sure I don’t lie on or kink the tubing. I can’t wait to be unfettered. I can’t wait for the silence of not having the stupid machine constantly clicking and chugging.

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And let’s face it… it’s the best thing that could have happened after surgery. Not that I was particularly thrilled with having an abscess and an infection and waking up at 4:30am in the hospital to one of my staples popping… it was gross and kind of traumatizing… but the wound-vac has sped up the healing process so so much it’s honestly kind of amazing.

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But pretty soon (like… possibly as early as tomorrow… or Wednesday), the wound is going to finally be too shallow to continue using the wound-vac. But to me… it still looks so deep and so severe. They keep saying that they’ll go to wound-care and bandaging at that point, but jesus even though it’ll be shallower…. there’s still a fucking hole in my stomach. I mean I practically have a second belly button.

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I am honestly scared of finishing the healing process without the wound-vac. I just have no idea what to expect. :sigh: Of course part of that is probably just that I can’t picture my stomach without the incision now. It’s so much a part of my life now you know?

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I don’t know. There are so many bigger and more stressful problems right now, and even more headed my way… but this is what I worry about right now.

BTW

On our way to my appointments yesterday, I broaached the shaving thing with my grandmother. I said, “So, I know you’re not keen on the head shaving…”

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And we talked about it, and ultimately, while she doesn’t agree still I don’t think- she does UNDERSTAND. And in the end “if that’s what you feel you need to do, so you can have control, we’re here for you.”

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Sometimes my family still surprises me.

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I think on Friday I’m going to set up the event on FB. Invite the friends I’d like to be there, and move forward with it on June 3rd. Even if Chemo won’t be for another couple of weeks, I’ll go ahead and get it over with. Maybe I’ll just have her buzz it down to peachfuzz. That way it’s less traumatic if it DOES fall out, but I still feel like the shortness was MY choice.

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The amazing and spectacular Sandy has expressed an interest in hauling ass out my way to be there for it which would be so amazing to me. Finally get to meet her in person and she’s such an inspiration and a support for me — I would be so thrilled to have her with us for this. Between her and PK and Krynda, and the rest of my “goils,” and Kris and just… the only one Missing will be Amber. And let’s face it, Amber went missing from me a long time before she chucked off to PA.

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I finally unfriended her on FB. After a post extolling the virtues of her GF which basically said isn’t it wonderful to have a GF who is also your best friend and sometimes your ONLY friend… I kind of decided I was done. Really? Your only friend sometimes huh? I was your friend too. Until you didn’t have time for me anymore because you got so wrapped up in her that you forgot I existed. Even when I was diagnosed with Cancer. Even when I really needed you. Even when our other friends came flying out of the woodwork to be here and be supportive. But that’s ok. She can be your only friend now.

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I wonder how long it takes for her to notice that I’m off her page. Half of me wishes for the email that says, “hey did you unfriend me?” so that I have a chance to explain just how incredibly hurt I am. And half of me hopes she never even notices.

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It’s funny. The people you find, and lose, once Cancer comes to call. The Amber I knew all these years would never have treated someone this way. She would never have just vanished. I guess things have changed.

Cancer's Body

Had 2 appointments today back to back, and I’m putting this here instead of in the Cancer blog because it’s not so much the Cancer itself I need to talk about, but more… the side effects of it on my body and what I have to get through in my head.

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See, before all this— Cancer stuff started, I had finally (for the first time in 20 years) reached a point where I really and truly learned to love and accept and cherish the body Ihave. I’d memorized it’s shape, caressed it with my hands, at night if I was feeling a little of the old body-hating ways come back, I’d soothe myself to sleep by running my hands around the roundness of my belly- memorizing the dips and valleys of my stretch marks, raising fingers over the leftover scars on my breast… left behind by years of self-mutilation caused by the sheer force of my self-hatred. And I’d remind myself that thisi s my body. For better or worse, whether I wanted to change it or not- this is my body.

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And I came to be at peace with it’s roundness. With the softness of my skin, the cellulite on my thighs, the dimples of my ample ass. I learned, one piece at a time (truly) to love the body that carries me from place to place. I learned (especially as my disease raged silently forward) to appreciate my stunning good health. The strength of my legs and arms, the smooth breathing of my lungs, the steady and healthy pumping of my heart. My clockwork blood pressure, healthy appetite. I learned about my body and I loved it.

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I stopped spending all of my time wishing, wanting, trying to lose weight. I recognized that perhaps the 40 lbs I lost but couldn’t break past was a plateau for a reason. After all… even before I’d lost it- I was equally healthy. And when it came back, when my appetite went rampant, and the pain of my unknown tumor left me struggling to dull the raging pain with anything but food, I learned to accept that too. To accept that I didn’t have control, and that my body needed something I hadn’t wanted to let it have.

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But then the Cancer came. The tumor. The pain. And in the days before my surgery, in the weeks before it all went to hell— everything changed. I couldn’t eat. Not really. 2 weeks of cream soups and proteins… carb free because the pain of trying to digest fruit, vegetables, and carbs was so horrifying it would send me crying and rocking into my bed for days. And the weight loss started then.

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Today, at both appointments I got weighed (they were in the same building, but one was with the radiation guy for the first time, and the other was with my oncologists PA). The last time I was in, I had lost only a few pounds since surgery. But today the scale showed something much more drastic. I have lost 12 pounds. 12. A weight loss I’ve never had except on rare occasions of severe deprivation and dieting. I am almost back to where I was in 2010 when I was actively TRYING to lose weight.

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But the thing is, I spent so much time loving that body. That 40lb heavier body with all it’s seeming drawbacks. And it’s not just the weight loss that messes with my head— my shape is so different now. There is still a hole in my belly above my belly button. Currently filled with the foam from the wound vac which suctions away the raw tissue of my incision, which protects me from the infectious abscess that necessitated it in the first place. But there are also new scars. Slashes and dots where scopes and tools were inserted during my surgery to help guide my Oncologist as she removed an 8cm tumor that had grown into and out of my uterus (also removed).

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My whole shape has changed. And at night sometimes I try to fall back on my old acceptance trick. To go back to memorizing this new landscape. So that I can make peace with my gutted self. So that I can accept these changes and learn to maybe love them too… 30+ pounds less than when we started more than a month ago… so that I can accept these changes and learn to maybe love them too… this new shape and curve and dip. The line that mediates between my belly and my lower abdomen. What once was smooth and round now… interrupted. My weight loss leaving odd pockets in what was once a soft landscape that curved out and then back down in solid state.

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But I cannot use that tool just yet. Because there is the wound-vac… with it’s foam, and tape, and tubing in the way. Because some of those scar marks are still tender, because there is a patch of irritated skin that I should not touch over-much.

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And so I struggle to come to grips with this new and still-changing body in the mirror when I stop to shower. But it’s not my body anymore. It’s Cancer’s body. It is my tumor’s body. It is a fearful body: That will no doubt change more, and more drastically in the coming months as I’m bombarded not only with chemo but with radiation.

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And as I struggle to accept this fluid and changing vision of my own self, I struggle too with other’s ignorance. With other’s well-engrained ideas of the social acceptability (or rather… not) of fatness. I have actually had someone comment on my weight loss to congratulate me. Another to try and call it a silver lining of my ordeal. As thought it were a disciplinary change, a choice… or even— wanted.

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I struggle. I struggle more now than I have in a very long time. To try and accept what seems to change on a daily basis. To stand in front of a mirror naked, and ignore the tube of my machine and try,try to connect this new and fluctuating body with the person that lives within it.

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I have to believe I will rediscover the peace I once had. In stages, in steps. I have to believe that wherever I end up when this is all over, that I will rediscover my peace with whatever that body may be.

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But right now, I struggle. And I cry. And I miss my solid fatness, the well-known paths my fingers and palms once traveled late at night. I miss the fat and healthy body that carried me through 30 years of life. I miss the body that Cancer continues to quickly and mercilessly destroy. I miss the girl I was… not so long ago. And all the space that she occupied- physically, mentally, emotionally.

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Right now, I still do not recognize the person I’m becoming. This body does not feel like mine anymore. This body belongs to Cancer.

Radiation

Today is the day I meet the radiation Doctor for the first time. I’m not starting treatment yet, it’s just mostly so I can ask questions, get more information about what will actually happen. I shared some… reservations with the oncologist last time I was there so she thought it would be a good idea to meet with him ahead of time.

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Grandmother is taking me up there, and after we’re done with him, we’ll go across the hall to have a followup with the Oncologist’s PA.

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Wound-Vac got changed out this morning and it’s crazy how tiny it’s getting. You can’t even see the black foam beneath the hose connector anymore. I should have had Memaw take pictures at each change… oh well.

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Right now, the “Big Buzz” (or, my head shaving) is tentatively scheduled for June 3rd. I’m hoping that today on our way to UT that I can talk to my Gran about the whole… head shaving thing. Every time I mention it, she seems to get agitated and I don’t think she really understands how important it is to me that losing my hair is somethingIdo to myself, rather than waiting for it to fall out. She keeps saying, but don’t you want to wait? Maybe you won’t lose your hair, not EVERYONE does!

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The thing is though, if I wait… once it DOES start falling out, I won’t have the energy to go out and have it shaved… and at that point it won’t be a CHOICE. I really need her to understand and support me… even if she still doesn’t really agree with it you know?

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:sigh:

The good news is with the med switch the nurse recommended the other day I AM sleeping better and my nausea isgoneTHANK GOD! I know once I start the chemo it will no doubt be back but for now, it’s nice to be nausea free. It makes eating easier… and I’m drinking ensure now too so hopefully I’ll start to feel a bit stronger too.

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Next week I meet with Dr. Kehoe again, to finalize my sign up for the clinical trial, to discuss the schedule for it all. To discuss the next step for the incision healing. At that point, I honestly think it will probably be too small for the wound vac- at the rate it’s healing now. Not sure what happens then. Questions for next week really.

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Moving right along.

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Of course in the midst of it all, my phone screen is completely cracked out. When I got the call about my diagnosis— I threw it against the wall of my bedroom and it survived without a scratch. But yesterday… fell off the bathroom counter and it’s completely shattered. Still usable, if a bit rough at spots… managed to order a replacement. Fortunately about $50 cheaper than the last time I ordered it… but still… was not looking for a $130 expense right now. But, whatever. I have to have a phone and the EVO is the best phone I’ve ever had.

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I’d like to say this is all getting a little less surreal, but I’d be lying. I’m getting used to it… sort of. But it’s still so… bizarre. I don’t know. I still can’t quite believe this is my life.

Suggestions

Took the Nurse’s suggestions yesterday about my meds. Worked like a charm:

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Slept like a rock last night. THANK GOD. Plus so far today: no nausea at all.

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Mom picked up some ensure so that while I’m working on getting my regular eating routine back I’m still getting all the nutrients that I need. Kind of a bizarre feeling to be 30 sucking on an ensure, but whatever.

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Talked to the Nurse today and asked (finally) about the size of the tumor (she’s going to find it and let me know), and the stage of my cancer. I’m a Stage 3c Grade 2 Uterine Cancer. Did some research and once I get past the “holy shit stage 3” moment, I realize it’s pretty much what she’s told me already. And sure enough, recommended treatment is chemo + radiation.

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I meet with the radiation physician tomorrow, so I can ask questions etc. And Dr. Kehoe’s office was nice enough to switch my Thurs appointment to tomorrow afternoon so I can just go there after I’m done with the Radiation guy. Memaw’s going with me so she can translate and ask the questions I might not think of.

To Write

I’ve wanted, since this all started, to sit down and write, seriously, about this whole… Cancer thing. About what it’s like, day to day. About what it’s like, finding out, telling people, dealing with it.

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But every time I sit down to do it, words just… fly away from me. I end up complaining, or crying, or so numb that it’s pointless to try and write anything. I want to be eloquent, to say something meaningful- but all that I end up coming back to really is… Fuck Cancer.

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Which isn’t to say I haven’t had good things to say, that there hasn’t been wisdom here. But mostly, at the end of the day everything boils down to Fuck Cancer. Because that’s what it boils down to in the end. Ultimately it all comes back to that. Cancer is big and bullying and painful. It’s frightening and overwhelming and if you’re not one of the lucky ones… it takes over.

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I thought I was going to be one of the lucky ones. Surgery. Done. It seemed so easy when we started talking about it. But then there was the tumor. And then there was the SIZE of it. Too big to come out vaginally, robotically. So then there was the incision. And the labs. The ones that were supposed to come back clean. Except they didn’t. One lymph node. One. And you don’t stop to think… what if they’d missed it? 1 out of 30. 1. You don’t stop to think what if they’d missed it because there’s a part of you that wishes they had- then you’d be done. You don’t stop to think what if they’d missed it because deep down that’s MORE frightening. That it could have just… run rampant… spread, silently, slowly, with determination from one to another to another.

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I don’t want Cancer. But I don’t want to die from it either. Not knowing it was even there. So you don’t stop to think about what if they missed it.

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I’m not a good patient. I’m not a good Cancer fighter. I get frustrated and restless too easily. I complain too much. I cry. A lot. Late at night, in the wee hours of the morning when everyone is asleep— I curl into the couch and cry. Because knowing the Cancer is still in me makes my skin crawl. Because I can’t sleep. Because I can’t handle knowing that the surgery didn’t fix it. Because I don’t know how to deal with having been through all of this and STILL having Cancer.

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I was so determined to be positive, to think positively that I never stopped to think- not even in the quiet, alone moments when no one else was there- I never stopped to think about what happened after. I never stopped to think about what happened if surgery wasn’t the end. And so I face the next pieces unprepared. Unready. Unwilling. As if there were actually a choice for me.

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“One Day at a Time” says my grandmother. As if 2 or 3 at a time were an option (to quote one of my favorite movies… 28 days). But I get her point- truly. Except I didn’t know these days would be happening. I don’t know HOW to deal with each day because this isn’t what I prepared for.

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I planned, and Cancer laughed. And it crept through my system, it spread from my uterus and invaded. And I wasn’t ready. So each day I try to deal with the fact that I am almost a month post-op… and I still have Cancer. The Cancer that I thought would be gone from me by now. This is not the summer I had planned. I didn’t plan for chemo, certainly not for radiation. I didn’t plan for nausea and fear and sleepless nights. I thought- I thought I would feel better by now, that I would be mended and on my way back to my life.

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But I’m not. I’m waiting for my incision to heal so they can pump me full of drugs that will kill not just the cancer… but everything else too for awhile. So they can irradiate me and hopefully, presumably, kill the Cancer that couldn’t just be… removed. And even now, even after the less than ideal resolution- I still won’t spare a thought to what happens if it doesn’t work. Because it has to work. Because if it doesn’t work— well, I’m sure there are more steps. More rounds of medicine, more support from friends and family. I don’t intend to let Cancer win. Not at 30 years old.

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So instead, I save my breath, I save my words, I save my fight. I accept my lack of eloquence and reserve the energy of words to commit to fighting the Cancer that snuck slowly and unexpectedly within me. What choice do I have? I fought long and hard to get to where I am today without it… I won’t roll over now.

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Forgive me then, if I don’t speak in wisdom and courage. Forgive me if my language is riddled with curses and complaints. Forgive me. It takes less energy to say Fuck Cancer than it does to try and tell you how it feels.

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Maybe when this is over, my eloquence will return. Maybe my words will come back to me, to fill the spaces where Cancer was.

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For now… you’ll have to forgive my rambling. You’ll have to forgive my ineptitude. Because for now all I have to offer is Fuck Cancer.

Nausea

Had major issues with nausea last night, to the extent that when I did finally fall asleep- it was in my reclining chair in the living room. #1 lying down in bed made it worse and #2 the chair is closer to the accessible bathroom.

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Around 5:30am, I got up, climbed in bed and mercifully (but fitfully) fell asleep there for a couple of hours. While everyone was getting up, getting ready for church, I fell asleep in my recliner again. Then at noon, I woke up, trudged back to the bedroom and slept in the bed for another couple of hours. Finally emerged at 230pm, everyone was home, in the living room, in the house, hanging, watching a movie, snoozing.

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Ate half a sandwich to appease The Mom. Continued to fee nauseated most of the day.

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Am still feeling nauseated. Took the last antibiotic this am…I’m hoping so so much that THAT was the cause of it all. I guess we’ll see tomorrow with it gone from my system. I did take an ambien tonight, and am down to one dilauted every 12 hours instead of every six. I’m really hoping that’s going to quell the nausea issue sufficiently.

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BUT… Since I have to call about the injection scrip tomorrow, I’m going to ask for recommendations to fight the nausea while I have the nurse on the phone. Tomorrow is also wound-vac home health day. We’ll see how much progress I’ve made. Weds. I meet with the radiation doctor, thursday with the oncology NP again. 31st is next Oncologist appointment and we’ll be dealing with setting up the chemo/radiation/trial thing at that point.

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I just want to not be nauseated all the time. I mean jesus, I haven’t even started chemo yet.

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Fuck Cancer.

I Will

Feel like I could MAYBE sleep now… except that I cried so much while IN bed that I’m now a bit too nauseated to lie back down.

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Chatting with Auntie K. on FB. Not as good as sitting on the couch at home watching Doctor Who with her and the dogs and the cats… but better than nothing.

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Found out I have an appointment with the radiation Doc. on the 23rd. News to me. I know Dr. Kehoe wanted me to try and talk to him this week because I’m super anxious about doing radiation … not that I’m not nervous about the chemo… but I’m more stressed about the radiation. (I’ve heard it hurts). Didn’t realize an appointment had actually been set up.

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So now, I have Dr. Albequerque on the 23rd, Dr Kehoe’s NP on the 24th, and then Dr. Kehoe again on the 31st. I also have to call the NP on Monday to check on the injection prescription. :sigh: At least I’ll be done with the Antibiotic tomorrow. so many fucking pills. Haven’t taken the anxiety meds for the last couple of days and have been spacing out the pain meds more— seems to have (present moment excluded) reduced my constant nausea quite a bit.

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Home health comes MWF again… she didn’t measure the wound on Friday because she said it would be more impressive to wait and do it on Monday. I really like the nurse that’s coming now. She is so careful and so deliberate. 2X she’s managed to change everything with almost NO pain. Who would have thought… with my history of SI and everything else— that I’d end up being so very afraid of being in pain?

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I’m learning things about myself in all of this. And a lot of it, I’ll be honest, I don’t really like. I feel like I have to learn to love my body all over again too. Which is stressful. I’d finally gotten to a point where I was really GOOD with my body and now it’s so so different and there’s so much that I absolutely cannot control and it’s hard to wrap my head around it. I have new scars, bumps, dips, marks… my stomach is practically a different shape- to say nothing of the hole filled with the wound-vac workings just above my belly button.

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In a lot of ways I’m stronger than I thought I was… and in a lot of ways I’m weaker. I do ok most of the time, emotionally but times like tonight I just get so overwhelmed. By the thought of it all, by homesickness, by anxiety, by fear, by anger. Sometimes in some moments it’s hard to keep my head above water. It’s funny…. they took out my uterus, my ovaries, everything— but I still have these super hormonal reactions to things that I don’t really understand. I mean, I’m not an idiot, I know not ALL of the hormones are controlled/released/created there… but I’m still surprised. At how well… hormonal I feel sometimes.

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When I was younger… a lot younger… I used to wonder what would happen if I had Cancer. If people would… come out of the woodwork to support me… if I’d be one of those strong, silent, stoic types who never complain. If people would think I was brave. And the truth is, they do. I hear it a lot these days, from friends, from family. And I want to laugh sometimes. Because I’m not brave. There just isn’t any other choice. In one of the Hunger Games books Finnick says, “It takes 10 times longer to put yourself back together than it does to fall apart” (or something like that). So whenever someone tells me how brave I am… I just… say thank you. Because they don’t see me at 1:30am, tears on my cheeks, nauseated, praying that it will all go away. Because they don’t understand that there isn’t any other choice but to cry after everyone else is asleep.

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I have Cancer, but if affects EVERYONE around me. My family, Kris, my friends. If I break down, if I lose it, if I stop pushing forward— what happens to them? Cancer isn’t just MY life event. And maybe that’s just the old me deep inside wanting to take care of everyone else still. But I don’t think so. Because I can hear it in Kris’ voice how much she misses me, how hard this is for her (it’s been a rough year for her anyway). I can see it when my grandmother walks by and ruffles my hair. I see it the way mom watches me when I get up and down with the wound vac machine.

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It’s my disease, but if affects everyone. Do you know how hard it is to hear your dad… your super-analytical, electrical engineer, never emotional dad try not to break down on the phone when you have to call and tell him you have Cancer? And then hear it all over again when you call to say surgery didn’t get it all, that there’s chemo, and radiation, and even though the prognosis is good there’s a long road to haul and maybe it WOULD be nice if he could come and visit soon? I’ve only ever seen my dad cry at my brother’s funeral… but the sound of him holding back tears the last few weeks is just… too much.

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I don’t really know what the point of this was anymore. I’m still nauseated which means lying down is kind of out for the moment. I’m so tired. And frustrated, and trying so hard to not just fall apart. Because I need my energy for other things… I can’t spare time and energy trying to put myself back together right now.

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See what I mean? There is no option but to move forward. To be “brave.” To be “strong.” It’s all you CAN do. So I’ll keep my meltdowns to the dark of night, when the rest of the house is quiet and asleep. And in the mornings I’ll smile and joke and sit in my chair and pretend that it doesn’t eat away at me. And I’ll try to convince everyone that it’s ok, that I’m ok, that I’m getting through it. And maybe when it’s all over I can lose it just a little and say, “oh my god I had Cancer.”

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But for now, I wait. I listen to the click and whir of the wound vac. I wait to start chemo. I wait to make an appointment to shave my head. I watch my body change. And I try to keep moving forward. Because what other choice do I have? For the first time in 30 years… I don’t WANT to just lay down and die. I want to come back from this.

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So I will.

Wound-Vac

So, since my incision developed an abcess that had me back in the hospital all last week, I now have a wound-vac in my belly. They put it in on Wednesday of last week, changed it before I left the hospital on Friday. And changing it out— hurt like a motherfucker.

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Home health comes out to us 3x a week now to change it out and reset it. The gal that came on Monday was nice but… a bit chaotic… and although it wasn’t as bad as when they did it on Friday (I nearly crushed one of my oncologists fingers when he offered them to hold and squeeze for the pain)…. it hurt pretty badly.

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But the gal that came today was SOOOOO much better. I asked if we could request that she be the on that come back from now on and she said yes. It hardly hurt AT ALL and I really felt like she knew what she was doing better than the last one.

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Had a rough night last night, but tonight I think I’m finally going to try sleeping in the rollaway bed instead of in the recliner. I’ve been too scared to do it because the wound-vac is awkward and I’m scared of the pain of it all… but I think it’s time.

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Friday I have an appointment with my therapist. Next week I see my oncologists’ NP, and then on the 31st I see the oncologist again to discuss the chemo/radiation process that will start soon after.

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Rolling right along I guess.

Want it Back

Had a nice visit with people yesterday, a long call with my Libbeth, but then… a really hard night.

This morning they delivered the 19 page research packet about the Chemo/radiation research project Dr. Kehoe wants me to participate in.

I guess I officially feel like a Cancer patient now. I put so much energy and positivity into the hysterectomy FIXING this. I don’t want to deal with the fact that it didn’t.
I’m angry and sad and frustrated.

I want my life back.

And I know it could be so much worse (and the first person that says it gets punched)… but I’m so tired. I was tired when this all started, and I hate everything about this.

I just want to go HOME.

Still

Still in the hospital. Incision ended up being infected (I’ll spare you the gross details) but suffice to say they removed the staples and are letting it heal “open”. By the way, if you ever have a major incision and they decide to let it heal open? Don’t. fucking. look. at. it.

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I had a 20 minute panic attack before the nurse tech could get me into the shower yesterday. I shouldn’t have looked down.

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Then things kind of calmed down for awhile… until my iv came out. I told the nurse earlier in the day after that maybe it needed an extra bit of tape after my shower, and she sort of shrugged it off until I sort of … bugged her about it later on. At that point though I think it was pretty much too late. At about 10:30 I looked down and sure enough it had popped. Of course since it was 10:30pm… that meant that throughout the night people/teams from various other areas in the hospital came traipsing through to try and (unsuccessfully) strike a new one.

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One women (man? I don’t know I was fucking asleep) finally got one but it hurt like hell. In the morning, the proper anesthetist came through and found a better, not-painful one.

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Doctor said this morning the wound is looking much better, and I’ve been up and walking today already. Waiting on Lunch now. I’ll shower about 5:30, and that way it’s all clean and sparky for when they come to repack and inspect around 6pm.

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Not much else to report really.

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Probably be her at least through tomorrow.

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After all that… I’ll be looking at Chemo and then possibly also radiation. I confirmed with her today that the chemo will be the hair-losing kind so shaved head coming up.

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And it sounds like I’m getting the wound vac today. not sure about that… but I guess that’s happening. :shrug:

Eventful couple of days.

Surreal

It hits me at funny times. The whole… “having Cancer” thing. I think that’s what’s bringing on the panic attacks actually. I get settled and then my head starts beating Cancer Cancer Cancer Cancer and it sinks in all over again and I flip out. I know that’ll go away eventually right?

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I guess it’s the needing treatment thing. We’ve been going blythly forward, positive thinking, the surgery will fix it all. I kept putting off dealing with the actual fact that I have CANCER. I wonder what my face did when she said she still felt like treatment would be necessary.

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This is all just STILL so fucking surreal. I can’t believe I have Cancer. Can’t believe I’m someone who has Cancer. How did this happen?

Panic

the daily breakdown panic attacks are getting a little bit much. So far have avoided passing out, but got close today. Just can’t handle all of this right now.

Mom asked if I wanted her to take me to see Supertherapist but what do I say? I had major surgery, I’m terrified of my incision and of my body and I’m frustrated and exhausted because I can’t just move the way I want to.

What is she going to do? Its not like its’ something fixable. And frankly I doubt talking about it is going to make it feel any better. :shrug:

After

Home. Well at Mom’s anyway still.

Frustrated by how slow the healing process is. They were able to do almost everything hysteroscopically, but there was a mass that was too large so they had to make an incision above my belly button that is now stapled shut. It’s painful, and stiff, and I am incredibly frustrated and impatient with how long it’s taking to feel better.

Have been dealing with a TON of anxiety.

I am scared of what happens when I need to have a BM.

A lot of my anxiety is coming from stuff like that. Had to have nurses help wipe me in the hospital and was really really surprised and disappointed taht they didn’t wait until I felt more mobile to send me home. I’m embarrassed and frustrated and …. afraid of my body right now. And it sucks.

And I know everything went well, people keep telling me that, my Dr. was really really pleased with the surgery, and with my post-op progress… but I am so terrified all the time, and so incredibly self-conscious.

I still haven’t returned anyone’s phone calls or texts. I just can’t. I can’t handle people right now. They have me on anti-anxiety pills thank god… but it’s still pretty bad. I didn’t expect it to be like this. I don’t know what I did expect… but it wasn’t this and I’m really struggling a lot. I know, logically it’s going to get better. I’m just not really feeling it right this second. :sigh: