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: