Now

I might be freaking out a little bit now, finally.

Prep

Tomorrow is liquids only:

1. Broth

2. Ice Pops (popsicles)

3. Water

4. Tea (except I don’t drink tea)

5. Coffee with no milk/sugar (except again… I don’t drink coffee).

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It’s actually not as upsetting as I would have expected. I can barely eat anything anyway so moving down to liquids only for 24 hours really shouldn’t be that bad.

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Then Monday … have to be at UT at 6am for my 8am surgery.

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I am trying to stay calm and positive. I’ve not been 100% successful, but I’m trying.

Tomorrow I also have to finish packing my laptop bag (do I look like a dork if I’m 30 years old and bring a small quilt and a stuffed penguin with me to the hospital in my suitcase??)

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Then tomorrow night I have to shower with this “Hibiclens” packet to help prevent skin infections, and again before we leave for the hospital on Monday morning too. (god that’s early)

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Then… by this time Monday- it should all be well over and done with. Then it’s just… waiting for the labwork on the lymph nodes to see if the Cancer has spread.

3 Days

Took my pill. Still in pain. It’s been a really odd couple of days pain-wise. Not sure what’s up with that. Appetite is shrinking, yet again. :sigh:.

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I’m ready for this to be over, but at the same time I’m still really scared about Monday. I walked into the kitchen a bit ago and told Kris I’d decided that the best course of action is to hire a stand-in. She can do the surgery for me and I can reap the rewards.

I get that it doesn’t work that way, but it was a really nice idea. For a minute you know?

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I know I keep saying it, but I just can’t wrap my head around it all. I just can’t. I mean, Cancer, seriously? Tumors? I looked up anatomy diagrams today, because that’s how lame a day I’ve been having. I wanted to see, to know exactly what’s going to be missing you know? They’re taking out so much. Ovaries, Fallopian tubes, Uterus, (not sure if my cervix is going too or not but I suspect so). Gutting. And I know it’s good, it’s for the best, I know that.

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But I just can’t believe that in 3 days I’ll be… empty. Empty of things that I’ve always equated with my … womanhood (?). I mean, logically I know it’s so much more than that, that my identity as a woman is so much more than my parts and pieces. I’ve preached that to others now for a long time. I’ve plenty of trans friends who I don’t consider any less “woman” than I am who’ve never had those parts.

So why am I so caught up on it in myself? I don’t know how to sort out all of my emotions about everything that’s happening. I want to be able to… separate it all: the hysterectomy, the cancer, the tumors, the pain, the reproductive aspects, put them each in their own boxes and deal with them one at a time but it doesn’t work like that does it?

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To say nothing of the moments when I worry about what happens when I go back to work finally. One thing at a time right?

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It’s just.. my whole life is about to change so incredibly drastically and I don’t know how to process it. I guess there’s part of me that’s afraid I’m going to… break again. The way I used to be. I’m stronger than that. I know I am. And my support system is so much stronger. It’s just… so much.

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Why do I allow myself to blog at 1am? Seriously, it’s just a bunch of trash from my head that I don’t let myself think about during the day. I’ve got start setting a limit on this bullshit.

Closer

The closer I get to Monday the more scared I am.

Like… tight-chest, raging head, panic scared.

I don’t know how to deal with this anymore.

ohmygod this is really happening isn’t it?

Nerves

I should be asleep.

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But I’m abnormally nervous about what is essentially… some really routine tests.

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I know I’ll get an all clear for surgery tomorrow.

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And then my surgery will be on Monday.

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And they’ll take out my uterus. And my ovaries. And everything else.

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And then they’ll be able to tell if my Cancer has spread or not.

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And I’m so not ready for all of this. I’m 30 years old and I’ve never even had sex. But they’re taking out everything. And I don’t know how to feel about it anymore. I just don’t. And at 3:15am… I just want all of this to disappear and go back to my normal life. I can’t believe this is happening to me. I can’t believe this is happening to me.

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And now I’m crying.

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fucking fantastic.

Really Happening

Tomorrow at 10am I have my preop appointment at the hospital for my surgery on Monday.

I’m getting ready to make a list of questions to take with me cause I keep forgetting to ask when I’m on the phone with the nurse or my Dr.

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Tomorrow will be a chest xray, ekg and possibly bloodwork. As long as that clears (don’t see why it won’t) I’m on plan for my complete hysterectomy (and possible lymph node removal) Monday at 7am. :eep:

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Questions I need to ask:

1. How long will I be in the hospital after surgery?

2. How long am I … bed-bound after going home?

3. How long before I can go back to work?

4. Food restrictions while I’m down?

5. What happens after? If it hasn’t spread and the surgery fixes it… do I have to start on hormones or hrt or what?

6. What if it’s in my lymph nodes? What’s next?

7. Can I take my 4am pain pill the day of surgery?

8. If it’s all robotic, will there be sutures or anything or a dressing that needs to be taken care of?

9. What do I need to watch for as far as things I should be calling about?

10. Will it hurt when it’s over?

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Some of those probably seem stupid. :shrug:

Anyone think of anything else I should be asking pre-surgery? God this is all so fucking new to me. The only problem with being really healthy for 30 years.. is that when something does finally really go wrong… I have no IDEA what I need to be asking/doing.

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I can’t wait to have my life back. Please please please please let those lymph results come back clear. Please.

Awfulizing

The first time I had a therapist that actually did *some* good, I was in the depths of a really severe anxiety disorder. To the point that for a period of time in my life, I couldn’t work, go to school… really do anything at all.

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And the thing that helped me most at that time was a technique she called “awfulizing.” Because I’d panic at the slightest bit of bad news, or the smallest most insignificant setback. So she started asking me, within the safety of our sessions at first, but then in my daily life at large, to awfulize situations as I experienced them. Basically take the shitty thing that just happened, and go with… what’s the worst possible outcome of that? Then… what’s the worst possible outcome of that? then.. the worst possible outcome of that… and so on and so forth.

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And as fucked up as it sounds, that actually worked really really well for me because 1 of 2 things would always happen: 1)I’d realize how stupid my anxieties really were because logic would eventually kick in or 2)I’d awfulize myself to the point where in my mental pathway I ended up dead one way or another. Since at the time suicide was not an entirely unwelcome option… it soothed me.

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I haven’t done that in a long time. A loong loong time. But with everything that’s going on, I had a moment of panic where I decided to try the technique again. The problem is… with the Cancer- ultimately… the worst possible outcome is that I die. It’s unlikely. It’s one of the less likely scenarios, but it is the worst possible outcome if things line up “correctly.”

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The problem is.. in the last few years I’ve come to really love my life. I’ve come to really love the potential that it is, the potential that I have. So that awfulizing road that ends with … died of Cancer- doesn’t make me feel better at all.

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I guess this is the part where I confess that as unlikely as it may be… I am terrified that my Cancer has spread. I am terrified of this surgery. I am terrified that it is so much worse than we realize. I am terrified at the idea of chemo, and radiation, and treatment, and all of it. I am terrified of everything that’s happening to me, everything that could happen in the next few weeks and I honestly don’t know how to even begin dealing with it.

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Popular school of thought would be… don’t think about it unless absolutely necessary. Why awfulize at this point when all it does is upset me… quite possibly unnecessarily?

I keep trying to be positive. But that doesn’t change the fact that I am genuinely terrified of what’s happening to me. I just want this to all be over and done with. I just want to be healthy again.

Deep Thoughts

This whole… Cancer experience has been so weird for me. I was always so healthy you know? I mean yeah, I’d get respiratory infections at the drop of a hat but nothing serious. And pain was never a problem. I spent so many years self-injuring I’ve got an unreal tolerance for it really. I guess that should have been everyone’s first clue really. When the girl who doesn’t feel pain is bent over with it… :shrug:

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I’m looking forward to that going away. To not worrying about constantly being in pain, having to set an alarm for pills. And this… year+ of constant bleeding… be glad to do away with that to I suppose. Makes swim season a bit easier right?

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And emotionally… I dunno. After my abuse, after all of my self-abuse, after all the years of sexual fear and repression and terror and hiding… maybe this will be the final thing that pops the cork so to speak. Maybe after this is over… it’ll be like… a physical manifestation of all the work I’ve been doing emotionally. Someone I care a lot about made that connection today. I’d like her to be right. I’d like to be done and over and be able to stand in body and feel… sexual for once. Instead of afraid. Instead of… vaguely dirty. Instead of… unsafe. Spent so many years divorcing myself from my sexuality and feelings, so many years divorcing myself from my desires. Because of what he did to me. Maybe this will be the final step- the one that… lets it all go once and for all.

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I don’t know. I’m not really sure what to feel about it all. I mean… they’re taking out everything. My uterus, my tubes, my ovaries… all of it. Probably the lymph nodes too by the sound of it all. Will it feel different? Physically? Emotionally? I asked a friend once who’d had a hysterectomy.. if she could tell, afterwards.. inside… physically if it felt different. Her response was, “no, I mean, how aware are you of your uterus on a daily basis anyway?”.

Except… I’m always aware. I never have a moment when I can’t FEEL something inside. Because of the pain. Because of the tumors. Because it’s enlarged. I don’t remember anymore, a day where I didn’t… feel that inside me. I think it will be odd. Empty. Better- I have to assume. :shrug:

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I don’t know. I say that a lot these days. A friend asked if I was going to see my therapist again.. but I don’t even know what to say anymore. I don’t even know how scared to be- until I know if it’s spread there’s not even really a threshold for concern. I hope it hasn’t, at least then it’s “easy.” But ugh. It’s too late to think about this shit. I should shut up and go to bed while my pain pills are actually working and I can maybe get some sleep.

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:sigh: Deep thoughts too late at night. And no answers to be had at the end of it all. At least not yet.

Surgery

Is officially happening on the 30th of April. 1 week.

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Pre-op is this Thursday the 26th.

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One more week with my uterus, ovaries, tubes… then it all gets gutted.

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Even now, I’m not really sure how I feel about all of that.

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I just can’t believe this is happening.

Food

Here’s the latest.

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Have figured out (the hard way unfortunately) that I am not able to digest solid food properly right now. The biggest issue seems to be solid carbs in particular. After I ate, I’d be good for like… 30, 45 minutes and then the pain was excruciating.

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So, went to Albertsons and bought a ton of soups, yogurt, pudding. I also got some shredded cheese and some sliced turkey (to experiment with protein solids). It seems to be panning out. Had soup yesterday with some shredded cheese and couple slices of turkey (no breads) and was able to get through without the same kind of horrifying pain. Today, we went to a movie (studio movie grill) and I got grilled chicken strips… but wasn’t thinking and also had a few french fries.

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By the time we got home I was in agony… for hours. Finally either.. hurt enough to pass out, or stopped hurting enough to fall asleep and woke up at 11pm to have more soup. Learned my lesson I guess.

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So from here until surgery it looks like I’m on a soup diet. The turkey and cheese seem to process without too much issue so I can help keep my protein in check that way.

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I talked to the NP yesterday about it and she said really the only thing they could do would be bring me in to refer me to a GI specialist… but I think the real issue isn’t digestion… it’s space. My uterus is super-enlarged, and I’m guessing that some of the critical organs in that area are a bit… displaced which may be causing some of the difficulty with digestion.

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If it doesn’t change after surgery.. then I guess we’re in for a trip to a GI. :shrug: I’m just hoping I’m right about the space thing, and that it isn’t a sign the cancer has spread into my gastric system. Won’t know anything about spreading until after surgery. She’ll be sampling the lymph nodes to check after the hysterectomy is done.

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Still can’t really believe this is my life right now. Like… seriously?

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Emotionally… dealing with the food thing ok I guess. It’s a little weird, for someone who’s had a seriously disordered relationship with food for most of my life to suddenly be so restricted by necessity and pain. I realized today I can actually start seeing some of the weight loss in my face. Not my abdomen- that is still distended as fuck unfortunately- but in my face. It’s bizarre. I’ve spent so much time the last 2 years learning to accept and even love the space that I’m in, the body I’m in, my belly, my face, my arms… I’m not really sure what to think as some of that disintegrates. Guess it’s just one more thing I’ll have to adjust to right?

Did Too Much

Depending on who you ask, I did too much today.

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I didn’t even get up until 4pm. All the pain from yesterday really took it out of me. Amazing, how reduced my life has been by pain. But I did finally get up, made it to Albertsons and back. Then at home I turned my mattress and put on a new fitted sheet. (this seems to be where the yelling and lectures are originating from).

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Tried a thing of tomato soup, a little bit of shredded cheese, and 2 slices of over roasted turkey (deli style). I want to try and find a way to keep up my protein even though I’m stuck on a fairly “liquid’ diet. So far so good. It’s not perfect. There’s still a little pain (probably from the turkey), but it’s nowhere near the 8/9 I was at yesterday after eating.

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Diet will get a bit dull no doubt, but it’s worth it if it keeps me at a reasonable pain level. Is it sad that a reasonable pain level for me is kind of… anything 4 or under?

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Trying to come to grips with my food issues in the midst of it all is kind of odd. But maybe in the end… this will be better.

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Talked to Dr. Keho’s NP today about the digestion thing. She said really outside of coming in Monday and running a bunch of GI tests, referring me to a GI specialist… the “liquid” diet seems to be the best idea. I really feel like surgery is going to fix this problem too— I think it’s an issue because of how enlarged my uterus is… creating space issues in my abdomen. Remove the enlarged uterus, and I think the problem goes away. She mentioned that surgery space is currently reserved for the 30th, pre-op appointment is set for the 26th. I’ll get a confirmation call next week to set it in stone I think.

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Surgery should be a relief. A big one. Then it’s just waiting for more labs… to figure out if it’s spread. To figure out what happens after surgery. To figure out what’s next with the Cancer.

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It’s weird. I still have a hard time wrapping my head around it. Around Cancer. Around tumors. Around this being… my life right now.

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And I get that it’s temporary (hopefully). But who pictures this?

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It’s weird. Movies, tv, books… you think when someone is diagnosed with Cancer everything goes into high gear- tests, scans, surgeries, treatment. It seems like everything happens so fast.

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But in real life… there’s a lot of waiting. And that’s one of the hardest things really… the waiting. Not knowing for sure. Even if it’s spread.. ok fine. I just. I want to know.

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A year. A year in pain and frustration and getting connected with the right doctor and working through the pain, and here I am. Still dealing with pain and fear and the unknown. :sigh:

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It’s almost over right? I just have to last a little longer. And then it’s done. Then the hard part’s done.

Waiting

When Kris gets home we’re going to walmart. I need to pickup a couple things, including a bag to pack for the hospital for whenever the fuck that actually happens.

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It’s not a particularly good time in my head right now. I’m incredibly frustrated and fighting some depression about all of this. Not having those lab results yet is fucking with my head, and I’m in so much pain right now it’s actually kind of ridiculous.

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I keep thinking I can’t take any more pain, and then it comes back and blossoms and I realize there is so much more that you can live through than you ever expect. Not that you necessarily want to at a certain point.

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I am not a good patient. I’m not good as a sick person. I’m not good at not being in control. I’m not good at being in pain.

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I cried a lot today. I want to give up. I’m done with people on FB selling me platitudes. I just want this to be over. It’s been more than a year of pain and discomfort and fear and anxiety and I’m fucking done.

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I don’t know if I’m going to make it to the store.

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I just… I don’t know how much more “waiting” I have in me right now. I don’t know how much more of this shit I can take right now. And there’s still this part of my brain that goes, “other people have it so much worse than you do.” But the rest of me? The rest of me just wants it to be over.

Reflections

It’s funny, in movies and on tv and in books— when they tell the lead that they have cancer it’s always.. .in the office. The Doctor calls and schedules a follow up, asks if the protagonist can come in, if they have someone they can bring with them. That’s how you know, as a voyeur, that Big. Bad. News. is coming their way.

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And I kind of thought that’s how it would be, I mean, what did I have to compare it to? When I was growing up I used to read a ton of Lurlene McDaniel… she used to write these drama novels about kids/teens with Cancer. I was obsessed with them for a long time. It wasn’t really the best base for comparison. Teen protagonists struggling with hair loss just in time for Prom. Not that relateable for me… 30 years old, endometrial cancer, uterus enlarged and filled with tumors.

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I don’t know what I expected. But a call at 3 in the afternoon on a Monday to say, “Are you at home? Are you by yourself? The lab work is back and it is Cancer. I’m referring you….” and then the rest, a blur. Numbness, spinning. Writing down a phone number. Figuring out who to call. Who needs a phone call, who can get a text, who can wait for the FB announcement.

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It’s a strange conversation to have… 15, 20, 25 times. “Yes, it’s Cancer. No, I don’t really know much more than that. Referred to an Oncologist. Calling them tomorrow. I don’t know what I need. I’ll keep you posted.”

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The words stop having meaning after the first 5 times you say them. It becomes a speech that you give over and over until finally you feel justified to hang up the phone and not pick it back up. You hear the same platitudes over and over, everyone means them… but they stop having meaning just like your speech. There’s nothing to tell anyone really yet anyway. Not until you see the Oncologist. And even then… it’s just more non-information. A referral out to a specialist. More phone calls. “No, referred to UT. She’s a specialist in this kind of thing. Soonest appointment is 3 weeks away. Yes I’m on the waiting list to get something sooner. I don’t really know anything yet. She’ll put together a plan after she examines me. I don’t know anything. Yes, I’ll keep you posted.”

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And then you get lucky, but you’ve stopped making phone calls. It’s all facebook updates from there, appointment moved up to the 12th. Spread the news. I’ll post an update when it’s over. People forgive you. You’re still working full time, working through pain because the pain pills only cover about 80% of the pain, 75% of the time. But you keep on. Because you still don’t really know anything. You scrape by, focus on surviving. And then it’s time. You’re early, paperwork done, hospital band around your wrist, a Cancer center waiting room… pretending that might not be your future soon. Ignoring sickly stares and missing hair. Erasing the sight of wheelchairs and hands clutched together in pain and fear.

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Another exam room. Dropping trou again, for the 5,000th time, for the 5,000th time. You’ve gotten used to it, hands in your body, fingers on your thighs, being prodded from the inside. You can almost tune it out. Almost. You can pretend you don’t feel your abuser brushing against you so many years ago. You remind yourself that this is your health, this not about sex, this is not about abuse. This is about healing. And you wonder… because it’s not going the way you expected. Something’s different. There’s the warmth of blood. It’s taking too long. “Hemorrhaging. 4squares. Doesn’t seem to stop. Can’t see to get the sample I need. I think we need to take you to the OR.”

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First it was, “surgery tonight, yes you can go home, pack a bag, come back.” Then it changes, her tone, the urgency, “No, I think it’s best we go now. I don’t like this. There’s something else going on here and I don’t think we should wait to find out what.”

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Tumors. Abnormal Tissue. And still… the Cancer too. The tumors at least explain the pain, that and the fact that your uterus is huge, enlarged and filled with tumors.. The Cancer you expected… but not the tumors. A whole new element to the game. And enlarged lymph nodes. Annoyed? Or infected with the Cancer? One answer changes everything.

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So you wait. Wait for a call. Wait for lab results. Wait for a date. And you think about how this isn’t how you expected it to go at all. This isn’t what happens in the movies. There’s no inspiring swell of music, no instant information turnaround, no immediate answers. It’s just you. Waiting for a phone call. To see what your life is going to be.

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I have Cancer. I still can’t believe I have Cancer. How did this happen to me? When did this become my story?

Packing

Meeting at work went well.

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Last Pain pill has finally worked about 80%. :sigh:l Which is enough for me to sort of function a little. I’m going to pack up a bag so when I go back to the hospital it’s ready and we don’t have to scramble last minute with lists and guesses.

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No call on the labs which means we’ll probably find out tomorrow. Not sure whether to be relieved or scared. Guess Numb is an acceptable alternative.

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So worn out. My brief trip to the office really took it out of me, although it was nice to get loved on by the Goils.

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Now, bag packing and then back to bed.

Waiting for the Phone to Ring

Living in terror of a phone call. :sigh:

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No word yet from Dr. Kehoe on the lab results. Getting ready to head into the office to see the girls and talk to Management about “the plan.”

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I almost hope she calls while I’m there… so that management can see just how terrifying this all is. Is it bad that I feel like I need their sympathy in order to get what I need from them professionally about all of this?

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I’ve poured my blood, sweat, and tears into that job, into my accounts, into that company. And in the last 2 years I’ve turned around more than 1 account for them. But I still feel like I constantly have to prove myself. And even though I put part of the delay of all of this as their fault… I still worry that being out for as long as I may be this close to our summer season (and into it even)… I worry what that means for my actual job.

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I’m almost glad about some of this. Because I think I needed a break from work. I needed a chance to step away and prioritize something ELSE in my life besides my job. I need to put things back in perspective. I’m just worried about jeopardizing my insurance you know? I can’t afford that right now. I just hope this meeting goes well and smoothly. I hope that I’m right and they do care more about ME and my health than about the work I do at that desk.

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I guess we’ll find out.

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And in the meantime… I wait for the phone to ring. To find out what happens next.

10 Tips from a Survivor

10 tips from a Sexual Abuse Survivor about making and getting through your first gyno appointment:

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1. Prepare: If you have a therapist, talk to him/her about it. Talk about your reservations and fears and discomfort. Don’t downplay how helpful massage can be in preparing you for this. I think that my 2 massage sessions (supervised and talked through with my therapist on hand) were probably the MOST helpful to getting me to a state where I could handle being touched by the Gyno.,

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2. Take Someone with You: Even if they don’t go into the actual exam room with you (which I do recommend though), don’t go by yourself. The first visit and exam, even with the best of gynos, is disconcerting at BEST. It’s important that you don’t try to process the whole thing alone. Have someone there in case you panic, have someone there in case you need a hand to hold- even if it’s for after the appointment is over. No matter how prepared you are it will bring up triggers and emotions that you may not expect and it’s best that you don’t drive home alone in case things well up on you unexpectedly.

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3. Talk to the scheduler/nurse/PA when you set the appointment: Let them know that you are a sexual abuse survivor coming in for your first gyno exam. In all honesty, most gynos will be familiar with how hard it is to deal with. They’ve seen survivors before. But they can’t help you if they don’t know. As hard as it can be (and it was very hard to admit on the phone) it is important that they know ahead of time. They can allow extra time in your appointment, they’ll know to be more careful with your triggers too.

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4. If they immediately ask you to strip into a gown, say you want to talk to the Doctor FIRST. My second gyno was great about this. They didn’t even bring out the gown until I’d talked to her face to face in the exam room for a good 20 minutes. And she didn’t even know my abuse history at that point. It will give you time to get more comfortable with him/her and to acclimate yourself with the environment you’re in and the setup. Feel free to ask to see the tools if you think it might make you feel better. I didn’t, but I know other survivors who like being able to see what would be used during the exam first.

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5. If you are feeling overwhelmed, ask them to stop. At one point during my first physical exam I told her I needed a minute. Now, every time I have to deal with a new nurse, pa, lab tech, sonographer, etc… I start by saying, “If I ask you to stop what you’re doing, I need you to listen. I need you to stop. I may not need to say anything, I may never ask you to stop. But if I say the word stop you have to stop.” I have yet to have anyone give me even the least resistance about it.

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6. Wear comfortable clothes. I keep saying I’m going to bring an extra pair of undies but I never remember to. The honest truth is, they will likely use lube during the exam to make it easier and potentially less painful (if you’re a virgin, the speculum can hurt the first time), and no matter how well they wipe you up, it can be a bit squicky afterwards. I usually try to schedule my appointments towards the end of the day so that I don’t have to go back to work afterwards, that way I can go home and shower and get clean.

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7. If you schedule your appointment on a workday, try to do it as late in the day as you can. Remember that this can be an emotional experience even in the best of cases. Give yourself leeway to process it all afterwards.

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8. If the first gyno you go to doesn’t give you a comfortable feeling, or you don’t like their bedside manner… you don’t have an obligation to go back. Remember that this is YOUR body. YOUR survival. It is alright to talk to the Doctor and decide you’re not comfortable moving forward with the physical exam. If you’re not comfortable, DON’T go back. Ask your friends for recommendations, talk to people you know about who they see, who they’re comfortable with. Finding the right gyno can be a little bit like finding the right therapist. There are a lot of factors to sync up. And for an abuse survivor it is critical to feel a certain level of “comfort” with the person you choose. You are not obligated to move forward with the first gyno you see.

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9. Remember that this is not about sex: This is about your health and well-being. And as horrifying as it is (especially the first visit), going to the gyno is critical to your safety. It is. I chuffed that off for a long long time. I regret that now. So much. I never thought I’d be able to separate the physical exam from my sexual abuse. Particularly since my abuse was molestation… focused on my upper thighs etc. It was a horrifying thought for me. But reminding myself that this was about my health DID help. In the moments when I would start to well into panic, I reminded myself that this was a health issue. And while it didn’t necessarily make it better… it did calm me enough to keep moving forward.

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10. It is ok: It is ok to get emotional. It is ok to get overwhelmed. It is ok to feel panicked and scared and uncomfortable. It is ok if all you can do in the first appointment is just TALK to the gynecologist. It is OK. You are OK. But your abuser has already taken so much from you. Don’t let him/her take your health from you too. Don’t wait until you are where I am. Don’t let him/her win that part of your life. Because whether you believe it or not… you are worth so much more than that. You deserve to be healthy and to be cared for medically, physically. And as terrifying as this is- your reproductive health is part of that. A big part.

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Anyone who ever wants to talk to me about any of this. Ever. My comments are always open. I will give you any contact information you want. To be fair… sometime in the near future I will be out for surgery/treatment. But if I am here, if I am within reach of my computer or my phone— I am here for anyone. I have been where you are.

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I won’t say I’m comfortable now. Every visit for me is still a process. I’ve been poked and prodded and inspected and examined. I’ve hemmoraged on an exam table and been wheeled to an OR. I’ve been put under, operated on, checked, exposed and every other terrifying thing I never thought I could survive. But I have. Survived. I continue to survive. So you will you.

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Make the appointment. Go. Please. Please go. There aren’t words in the english language to explain just how important this is. Don’t get to where I am: 30 years old, facing a complete hysterectomy… waiting on labs to tell me if my Cancer has spread to the rest of my body. Waiting to find out what my life is about to be. Go now. Make your reproductive health a priority the way I never did. Because it is so important, even if it is the most terrifying thing you ever do.

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And I’m here. If you need me. If anyone needs me. I am here. I survived. I’ll survive this too. Just watch. If I can survive all of this… you can make that call. I know you can.

Leave

I won’t lie, I’m a little nervous about tomorrow.

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Kris is going to take me to the office so I can get my paycheck and talk to E. about my leave. But I’m so nervous I’m going to either blow up, or say something I regret, or let her totally railroad me into something.

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I plan to use my 2 weeks vacation up first, then by that time I’ll have a better idea of when I’ll be able to go back, and will have my FMLA paperwork filled out to turn in.

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In 2 days without me, I wonder if they’ve realized how much I actually do. Could be interesting to see if they’re drowning yet. If not, they likely will be soon. I think the main thing is going to be keeping me from flipping out with all of my frustration. Because in all honesty, the reason I put off dealing with all of this for so long was because I was so freaking busy and despite repeated requests for help with my workload, it was a constant string of empty promises. And now I’m stuck. uterus filled with tumors, waiting for path results to decide how “bad” my Cancer really is.

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And part of me wants to go in tomorrow and just… point my finger and yell and blame them. I want to be angry. I want them to take responsibility. But I need to be calm. I need to be… docile. Because I can’t afford to get fired in a tiff when I definitely need the insurance so desperately.

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So I’ll be good. As good as I can be. And I’ll hope that they won’t push my buttons. Because I don’t know if I can bite my tongue if they do. I’ve poured my blood sweat and tears into this job, into my accounts. And when I stop to think about how I could have had this figured out months ago, had it taken care of… have avoided at least SOME of this pain if I’d just stood up and said, “HIRE HELP SO I CAN BE AWAY TO DO THIS” it kind of… makes me angry.

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I need to stay calm tomorrow. I need to not jeopardize my job until after I’m done with Cancer.

For the First Time

For the first time...

Today for the first time, I woke up and thought… “I’m really sick.” Like it’s something that’s actually happening to me.

And I’m surprised not by finally being able to carry the thought at all, but that sitting with it didn’t upset me so much. Therapy yesterday helped I think. I’ve been so busy just… trying to go as long as I can, counting down to my appointment at UT that even though I’ve said it in some form or another along the way, I’ve spent a lot of energy not accepting it about myself.

I’m sick. I’m really sick. I have Cancer. I have tumors. I need surgery. I may need chemo. I’m sick.

But I’ll be ok. I mean, eventually. If my lymph nodes aren’t involved yet, I’ll be ok… sooner rather than later.

I’ve spent so long qualifying this as.. pain. It seems strange to suddenly be so at ease saying that “I’m really sick.”

That probably doesn’t make much sense to most people. But for some reason, this moment is kind of huge to me. I’m really sick.

wow. I guess I’m done disassociating myself from what’s happening in my body. Maybe that will just make it that much easier to fight it.

Update

OK. SO for those that are wondering what’s going on and have maybe missed the spastic updates of the last couple of days: Be aware there may be a bit of tmi Below but I’ll try to keep it to a minimum. .

Went to UT SW on Thursday to meet with the oncologist. She is evidently the specialist in endometrial cancer in the area. She was surprised to hear I’d been in pain, and so much as endometrial cancer usually doesn’t involve pain. .

During the physical exam I started to hemorrhage. She decided the best course of action was to send me directly to the OR for another D&C then keep me overnight to do a CT scan in the morning. .

After about an hour in surgery they removed 3lbs or so of tumors and abnormal tissue. According to Dr. Kehoe (my oncologist), I’ve been carrying around an impressive amount of abnormal tissue. They did not remove all of the tumors and tissue. Evidently they could have continued scraping for an hour and still not hit bottom.
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The lymph nodes in that area are inflamed, but they’re not sure if it’s just… annoyance from everything that’s been done in the last month, or if the cancer has in fact spread. .

They took samples for path, and Monday or Tuesday they should know if the cancer has spread to my lymph nodes. .

Either way, they will be scheduling a complete hysterectomy in the next week or two depending only on the availability of the robotic equipment they’ll be using to begin the procedure. They feel my overall medical health is good enough to allow them to at last start the process robotically and then if they HAVE to go to full surgical form there they will. .

IF the path labs on the lymph nodes comes back clear, then it’s just a matter of doing the hysterectomy and all is well. If it has spread, then there is still the hysto but they will then form a plan of action from there to treat the spread. .

In the meantime, waiting on the path lab results and the robot to be available. She wants to move as quickly as possible, but needs to know if it’s spread to tell if she has to remove the lymph nodes as well as everything else. .

I should know more early next week. For the time being, I’m off of work. I have 2 weeks vacation time and will be filling out FMLA from there. Hopefully it hasn’t spread and then it’s simple. Surgery, recovery, and on with life. Right now we’re focusing prayers and energy on the lymph nodes enlargement JUST being irritation and not from spreading cancer. .

I appreciate so much all the prayers, good energy, vibes, love, etc. Keep it coming. Have much local support between my mom, grandparents, and godmother Kris. Dad may or may not fly in depending on what the path results and scheduling turns out to be. Emails/messages/texts etc. are loved and appreciated. Love and blessings to you all.

24 Hours

I suppose I should update. It’s been an eventful 24 hours. Yesterday was my appointment with the UT Oncology Center.

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Dr. Kehoe is fantastic. I felt very comfortable with her, and she set me at ease right away… as much as anyone can set you at ease before shoving a speculum up your hoo-hah at least.

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My mom and grandmother were both with me, and she pulled the curtain for some privacy during the actual exam which didn’t go very well. Almost as soon as she started poking around, I started bleeding. The bleeding quickly turned to hemorrhaging and she decided #1: We were dealing with more than just the endometrial cancer and #2: she wanted to send me over to the OR that night for another D&C. Originally I wanted to go home first and pack a bag which she agreed with… but then decided she needed to send me directly to the OR to do the DC right then and there.

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Cue a lot of frantic phone calls and texts, postponing some panic and fear. They wheeled me to the car, drove, me to the Hospital (just down the street from the Cancer Center), wheeled me up to admitting and away we went.   Had a fun tussle with one of the prep nurses who wanted me to try and give a urine sample despite my insistance that all I would be able to give her was a cup of blood. Ended up giving her a cup of blood and a giant clot so I guess I showed her.

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This time they did at least put me under, complete with breathing tube (they were nice enough to remove it while I was still not totally awake so my only souvenir of that is a seriously scratchy throat). And evidently while scraping away they cleared out lots of abnormal tissue and several tumors (one that I hear was fairly substantial). They did not do a full… to the walls DC. She said later that she could have kept pulling tissue for an hour and probably not hit bottom. In fact (she has a decent sense of humor) she said she had to commend me on the amount of abnormal tissue I’ve been carrying around, it was really rather impressive.

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They’re keeping me overnight (hence the 4am posting… they just did vitals, weight, and took blood), and doing imaging, scans, and more testing in the am. I probably won’t have path labs back until Monday or Tuesday but that will help her determine what our real course of action is. I suspect there may be some actual medicinal treatment involved given what she’s seen already but they will be scheduling the complete hysterectomy for as soon as they possibly can (hopefully within a week I think she said.)

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I don’t really know how to feel about it all yet. On the one hand… I’m relieved. Because for the first time in this whole year+ someone finally recognized that there is a serious and complex issue going on. And maybe it’s just that my body finally gave off the right signal to someone, I don’t know. I have to give credit to my current gyno for setting up the first DC and sending me to the oncologist at Presby… and props to him for sending me here… this is definitely the right place.

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Dr. Kehoe was very kind post op too. When I asked how quickly we could set the hysto (and started to cry out of just… sheer emotional exhaustion) she patted my hand and said they wouldn’t make me wait long. They want to tackle this right away— they just need more information from the lab results first.

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I feel like I’m in the right place now. With the right people. And that’s comforting.

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I’m off of work. I’ve been pretty much told to stay low, they’ll monitor my pain (another clue evidently that this was more than the endo cancer… evidently pain is atypical with endometrial cancer— who knew? Not I). I’ll be filling out my FEMA paperwork next week.

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Am I happy? No, that’s not really the right word. I’m hoping I’ll be home later tonight, and can make my therapy appointment tomorrow afternoon. maybe then I can start to process everything.

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Honestly? I’m scared. I’m tired. I’m relieved. I’m angry.

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I asked when I saw her post-op if getting on birth control when I was… 14, 15, at all could have been preventative of this. She said it’s really too hard to tell. A lot of it depends on just how abnormal the tissue is, how determined it is. It might have. But there’s no way to say for sure. It’s enough for me though. Enough to know that at the very least… maybe I or someone would have recognized sooner that something had gone wrong. Even if it couldn’t have been prevented.

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I’m so tired. Of all of it. I’ve always been pretty healthy in the grand scheme of things. And with my abuse history— having my uterus be the thing that “goes bad” is pretty … horrifying to me. I won’t deny that part of what is so upsetting to me is just the sheer… having people touch me somewhere that 2 years ago would have sent me into a full blown panic attack. I have to give my therapist a lot of credit and thanks for getting me to a point where I could even GO to a gynecologist in the first place… much less to be able to endure everything I’ve been dealing with for the last 3 months.

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Still, I’ll be glad when it’s all said and done, glad when it’s over. The bleeding, she said, won’t stop really until the hysterectomy is done. It will get better in between, but it won’t stop. I’m ready for that to be done. Ready to be able to get my life back.

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I’m missing 2 shows and a wedding this weekend. And I’ve been missing so much more in the last year+ because of all of this… who knows how long really it’s had an effect on me? How do you quantify that? At least now someone is dedicated to finding the solution. To making me better. Cancer won’t beat me. I won’t let it. I have too much to do when this is over.

Tomorrow

Tomorrow is finally my appointment at the UT Cancer center.

Tonight, for the 4th of the last 5 days I have another fever. Coming down now, but it brought a wicked headache with it, so I’m probably headed to bed soon.

I ended up taking the whole day off tomorrow. That way I can get ready at my own pace, sleep in, and go WITH my mom and gran instead of having 2 different cars getting lost on the way to this place.

I’m nervous. I’m nervous and relieved and scared and tired and hurting and if things don’t start moving forward I might just… flip out.

I can’t deal with all of this stagnation anymore.

Easter, Post

A nice day with my bfam. Got a GIANT stuffed penguin that mum meant to give me for Christmas but forgot about… so I got it as an easter present. They know me too well.

Then a nice chat with my dad. He keeps telling me he’ll fly out for my surgery if I want him too… which worries me to be honest.

Appointment with the oncologist is on Thursday. And I’m almost regretting it. I think back to last year when stuff was… wrong, but I didn’t know I had Cancer. And it was easier to just.. feel off. I am genuinely scared about this appointment.

To say nothing of the fact that this will be person #100 (not really but I’ve lost count) who will have me strip so they can shove their hands, fingers, tools inside me to check me out. For someone who has spent the majority of their life avoiding vaginal/uterine contact with other persons … it’s been more than a little disconcerting.

I suppose at some point I’ll sit down and actually blog about that… get it out and out of my head. But not tonight. Tonight, I have laundry to put away… and then I need to sleep. I hope this Dr. on Thursday has more answers, has better plans. I’m so tired of all this waiting and wondering and worrying.

Easter

Easter has always been a bit problematic for me. The thing is, this time of year is just- difficult. And while this year I’ve really tried to avoid going down the “spring always sucks” road that I tend to get lost on… it seems like the “spring always sucks” keeps holding true nonetheless.

In 7th grade, my brother (adopted) got sick and then passed away (he was 11, I was 12… he was severely handicapped, profoundly retarded… it wasn’t exactly a surprise to be honest). When I was 22, my mom (adopted) suddenly got sick and passed away as well while being tested to get on the liver transplant list. I spent 4 days in April watching her die. :shudder:

And typically all the years in between, from Feb-April or so, my life just seems to go to shit. It’s when I’ve had the most relapses emotionally/mentally. It’s when I’ve done my most and worst self-injury. It’s host to most of my suicide attempts. For some reason, (even when it’s not my fault at all), It’s also when most of the jobs that disappear, disappear. I was happily and blissfully working at Dickies Medical… when that job shut down completely in April of 2009.

This year (and last year too really) I’ve really turned my thinking around a lot, and tried to treat it like any other time of the year. And so, mentally and emotionally- things have in general been a lot better. But when I sat down this morning and thought about it— I realized that even though my attitude has changed… the universe still seems determined to take the shit on me in March/April.

Last year, this is when my really bad symtoms started- end of March, beginning of April. This year, I was in the hospital on the 15th of March, and diagnosed with cancer on the 19th. I’ve been battling my worsening symptoms ever since, and having to find ways to deal with still working full time while I feel like Im sort of… disintegrating waiting for this stupid oncology appointment.

I’m tired and frustrated and in all honesty, I hadn’t even put it all together until this morning. I just want to throw my hands in the air and go “welp. It’s fucking Spring alright! Happy fucking Easter to me!”

But I’m trying so hard not to fall into that. That’s a downard spiral I don’t have time for right now. So this is me. Acknowledging that the universe is being a complete and utter shit as usual… and vowing not to let it pull me back down. Next year… this will be better. Next year this Spring Vendetta against my sanity will not happen. I won’t let it.

Fever

Fever

I’m not sure how concerned I should be. Spiked a fever today all of a sudden. Have been super tired (even more than usual), passed out cold after getting home from a movie this afternoon, then gave up halfway through my grocery trip and came home.

I just ate and took my pain pills, but have just felt totally off— so I took my temperature. 100.2

so…. yeah. When they released me after my D&C one thing she said was to let them know if I had a fever… but that was like… almost a month ago— should I still be worried? Esp. since it’s so high? (My “normal” usually runs about 97.5).

I have absolutely no idea anymore what is normal or not, what I should worry about or not. My apt. with the oncologist is this Thursday. ugh. I don’t know what I should do right now… just go to bed and hope it gets better?

Pain

I don't understand

Why the pain is back this way?

Now all that pelvic/lower abdominal pain that was so bad before my D&C is back suddenly. 3rd dose of pain pills for the day. And I didn’t take them soon enough so I’m already in a shitton of pain.

I don’t want to have to deal with this again. why is this pain back? I don’t understand.

fuck. fuckfuckfuckfuckFUCK.
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Old pain. New pain. Sitting at work trying to focus around it all. Trying not to grunt or groan or moan as I ripple with cramps and pain. Back to steadier bleeding too.

Trying not to be worried or scared or negative… Proving to be a bit of a challenge right now.

1 more week till UT oncologist. Jesus if I last that fucking long without a breakdown.

Changes

     I walked into the kitchen yesterday and Kris looked up from the fridge and looked surprised, “You have lost alotof weight.” And I hadn’t really noticed myself.. I mean, my belly is still distended and a little swollen so my clothes still fit kind of weird— but I went back to the bathroom and stared in the mirror and realized she’s right.

       Thanks to the Cancer, my appetite has changed DRAMATICALLY. Now, don’t get me wrong- I love food, I always have. Not all of my weight is here just because of things beyond my control- I love food. And I’ve always had a big, and dependable appetite.

       In the last few weeks though, that’s changed a lot. Not only have my cravings changed (that’s been adjusting for awhile), but the amount of food I can stand to eat has diminished significantly. I’m good for (maybe) 2 decent-sized meals a day. Not every day even. A lot of days.. it’s one full meal and lots of ice-pops. There have been a couple of days where it’s been food-free. Not because I don’t want it— actually yes, because I don’t want it. I don’twantfood, the thought of it makes me ill. I get nauseated easily. And if I eat too much now— I can’t sleep, it’s so uncomfortable to digest if I eat the wrong things, or too much food, or blah blah blah.

       And it’s not that I’m opposed to losing weight, if that happens… to be honest, I don’t really care either way. But there are a couple of things bothering me about it. And I know- how ridiculous? Cause, I don’t have enough to worry about right? How about we focus on hey… Cancer for instance. Except… I’m tired of thinking about Cancer. So right now, I’m going to think about my weight… and about some of the things I’ve been thinking about today.

        I’ve spent a lot of time hating my body. A lot of years overweight and unhappy and self-loathing and uncomfortable with my appearance. And over the last… oh 2 years? I’ve worked really hard to reach a point where I am not just comfortable, but HAPPY and healthy in my skin- just the way I am. And now, not by choice, I am starting to lose weight. Starting to have a different body than the one I have grown to finally love.

       Maybe the reason it bothers me so much is because, like so much about my physical being right now, this weight loss was not a choice. My appetite change was not a choice. I didn’t decide to go on a diet, I didn’t decide to change what I eat, or when, or how much. I just- can’t. It’s like the idea of the hysterectomy. I wanted one. I asked for one last year- a partial at least. But then it was a choice. It was something I decided I wanted for myself, for my body, for my future. Of course, in the case of the hysto- I also only wanted a partial. Now though, I’m facing a forced one… a complete one. And like the changes in my diet and appetite… it’s not a choice I have to make anymore.

       I think ultimately, the weight loss will be good for me. It will allow me to move more freely, hopefully it will help with my atrocious sleep apnea. But I hate that it’s not something I chose. I’m so tired of my body being something beyond my control. I feel like all I’ve done this last year is had my body turn against me. I feel like any control I gained over.. how I feel in my skin is flying away from me at warp speed. I don’t get to control my apetite, I don’t get to control how much I eat, I don’t get to control my reproductive system, I don’t get to control when I need to rest, how much I can do and accomplish.

       I hate not having control. I feel like everything about my body right now is beyond my control and I’m so incredibly frustrated. And I don’t know how to be ok with it. I don’t know how to love where I am physically and how to begin to love where this body is going to end up when this is all over. :sigh:

       This has been a nonsensical rant that basically boils down to… fuck Cancer and the fact that it has ruined any faith and joy and comfort that I had worked so hard to gain over my body.

I Don't Know What to Say...

I never know what to say anymore. To the simplest questions..

        Hey, How are you?

-fine

-I have Cancer

-today’s ok

-I’m tired

-Not so great today

     
        Hey, you look tired, everything ok?

-Yeah, no I’m fine.

-Well yeah, I’m… having some health issues

-I have Cancer

-I’m fine


         Hey, you haven’t been out in FOREVER! Come to the [insert event here] tonight!

-Yeah, not tonight

-Maybe next time

-Maybe when this is all over

-Sorry


         We’re glad you’re back, you were out yesterday… are you feeling better?

-Not really

-Thanks, yeah kinda

-Except for the Cancer, yeah.

-I’m fine

And I get so tired of, “I was talking to so and so about it and they’re putting you on their prayer list too.” “This woman came up to me at church, because you know I put you on the prayer list, and she was telling me just… how moved she is by your story.” “It’s going to be ok because it’s all in God’s hands and he knows what he’s doing.”

And it’s not that I don’t appreciate it, or that I even… don’t believe that. It’s just… :shrug:

I just want this to all be over now. I want my life back. I wish there was just.. a memo I could send out that says, “Yes, I have Cancer. Sometimes, that means I might not make it into work. Yes I’ll probably be fine. Thank you for putting me on your prayer list. Please save your platitudes. I appreciate your kind thoughts, but I’d rather not talk about it.”

I did too much this weekend. I should have stayed home and rested. But I miss my family, and I had errands that needed to be run. And now I’m uncomfortable, and tired, and needing a weekend to recover before I have to go into work tomorrow. And all I want to do is just crawl into bed until the 12th. I just want to hide there where no one can notice me, no one can expect anything from me. Where I can just… sleep my days away and ignore that drumbeat that never ends. “Cancer. Cancer. Cancer. Cancer. Cancer.”