Growing up I sort of thought myself as being pretty lucky. I never thought of myself as horribly ugly or particularly pretty- just sort of normal. I liked being able to eat pretty much whatever and having a fast metabolism, I liked all my activities as a kid... for the most part and there really wasn’t much issue. When all the girls started wearing makeup sure I wanted to try it too but ultimately thought it took too much time and gave up on it.
Cancer has has really changed how I feel about... myself. When I first blew up with ascites I hated it. Sure my friends and I joked I looked pregnant by like 9 months but I certainly knew that wasn’t it. Besides how do you balloon that big in under 3 weeks? Not possible. That was when I started noticing things and when I couldn’t eat I hated how my collar bones stuck out and how my cheeks that were usually full looked hollow.
Today Im not so gaunt and malnourished looking (though I might head that way)... but I’ve begun to balloon again with ascites. It makes it hard to get a good breath in, hard to eat, sleep and pretty much anything... so that’s why I’m getting a permanent drain installed. Okay so my ascites is only just coming back but I already know it’s one of my many beautiful cancer given symptoms so it probably won’t go away... hence the placement. I hate how distended my abdomen gets- makes me feel in no way cute or at all pretty and now I get a tube sticking out of me. Not thrilled... also because it’s going to make showing all that much more difficult because it can’t get wet. Excellent, just what I wanted to hear. Way to make me feel better.
Boo hoo... big problems for me, right? Yes and no... I hate complaining because it makes me feel like I’m grabbing for some sort of attention but also... I feel like my independence is running away from me and fast.
I think everyone with some sort of cancer diagnosis is probably prescribed some sort of antidepressant at some time or another. They work. Otherwise its waterworks all day every day... sort of for me at least. My finger tips feel dead, typing hurts yet writing is one of the few things that still bring me some sort of happiness but it comes with a damn price. I'll probably never run my fingers over grass, feel sand beneath my feet and actually enjoy any of it because of that deadness in my fingers and toes. I'm not strong enough to run anywhere anymore... mostly this all just sucks.
I wrote off dating long ago too because... who wants to actually attach themselves to someone who will be gone- who wants to start something and then watch me potentially suffer down the line. Seems cruel. Unfortunately, I didn't happen to have any sort of relationship with anyone before diagnosis... but also lucky for whoever that might have been. I'm not denying that my friends don't feel anything.. its just different in the sense that they were all already a part of my life... and I don't want them to feel bad either.
Pity. That's the other thing. I really hate it... like getting treated differently because I have this fucking disease. It just reminds me of where I am now versus where I once was.
I'd really write more but my fingers hurt, I'm hungry and also find food nauseating right now.
.I guess a brief little actual update is sort of in order. Man, I guess I've been itching to write. Well, so I was feeling a bit off last week which was when they found me a little short on blood so I got a blood transfusion and then some iron for a little extra boost happiness. I feel better though my appetite is kind of down. It's just sort of uncomfortable to eat? Like when it sits in the stomach part, not the going down bit... yet hopefully. Mostly I've been eating lots of fruit but my mom is like... she's not eating so there's that worry. Oops. Anyways... I also get some radiation not really to shrink tumors but just stop any bleeding that might have cost me that wonderful blood earlier. (Could've used it on my trip to Portland to visit my friends).
ANYHOW, I had my radiology consult the other day and met this nice lady (65 with breast cancer) going in for her treatment for the first time- they didn't want chemo for other reasons. She seemed rather downtrodden (and I don't blame her- happy 65th, you've got cancer I know the feeling). I wanted to cheer her up because she told me that she had grandkids that were coming back into her life- I mean I wish I had kids... and grandkids that could visit me. She asked me about mine... of course 22, stage IV, metastatic- she looked like she wanted to cry. She talked about being nervous for radiation- just wanted to go home... I said the same thing. Somehow I guess I come off as more chipper.. but maybe that's because I've had time to let everything settle and I'm sort of comfortable in my own diagnosis- I've cried about most things there are to cry about already... I already know that if it were me around the time of my diagnosis... I would've been pissed. Because how dare someone 65 be upset at their cancer diagnosis... they got age, they won that ticket. But now, all I really wanted to do was to hug her but that didn't quite seem appropriate.
In any case, I sort of wish that I'd run into her down the line... hopefully the cards look better for her. There was one other lady also in for the same thing, also her first time but was of course much less chatty. The sort of type that my mom would be.
Bringing this back to me because... I guess that's what this page is all about. My mom seems to frown upon patients chatting together in the infusion clinic. Maybe it seems annoying but also its kind of nice. We're all there to get some toxic shit and maybe add some months or years to tack on to the ol' life span... it's nice to have someone to talk to. I wish my mom wouldn't think it so bad. I get along with plenty of folks that are older (most of them there look much older)- and okay fine I'm not really interested in being pitied because of my age but it would be nice to hear some perspective or to chat about something irrelevant anyway because all of this is pretty darn depressing. (Most of this is all experimental anyway... see what works and for who, record the data and maybe make medical progress). Anyway that's quite enough from me for one night... Thanks for taking the time to read all of this. It's really just all the things that go through my head anyway.
Oh yeah and 4/20 BLAZE IT UP (I know I'm not cool).
Well its been... six months since my wonderful diagnosis. Amazing right? That I get to count this sort of thing. Like one minute before getting diagnosed I'm fine and everything is great and dandy except for the pain mild pain, reflux and irritating "bloating" and the next you get labeled with that thing: cancer patient. It's really great, soothing on the soul. Not. (Not trying to offend anyone here but I've got a horrible dark sense of humor if any of you haven't gotten that yet). So one minute life is great and the next its not, but its not one of those things like ripping the damn band-aid off because that would be like... "sorry... she got hit by a bus and didn't make it" no this is the slow one where everyone else around gets to stew around in misery watching the person they care about deteriorate. And the patient? We we're still around, pretty sane... most of us at least (it hasn't got our damn brain yet, hopefully) and we get to live for a bit... maybe try and fight it but its like a slow descent into hell. Except Hell isn't the destination, it's the journey. You know that you're getting weaker, you can see the signs of the dreaded cancer coming through. In essence even with chemo after a metastatic stage 4 diagnosis of this BS, you're just patching up the holes in an already compromised hull of some boat. This ship will be going down. Like... ships don't want to go down but there are unfortunate circumstances that drag them there. So no, for most patients the realization of imminent death is the initial shock but then comes the realization that slowly body function will get away from you... you're being hijacked and there's little you can do about it. Chemo, acupuncture, radiation- palliative measures, heck maybe try out that THC oil that so many people claim works (I have yet to try it) but like the road ends for everyone. Just sucks that some people get a bit of a preview.
When all of this gets to be just too damn much, when my days are just total trash... then I'll quit wanting to be around in this life so to speak... but I'm not there yet. I've started working a couple days a week which is great because I can interact with normal people that have 0 idea about (intense whisper C word). There, I'm just any other person and I don't have to contemplate my potentially sooner than apt demise.
Speaking of that whole dying thing. I think I've mentioned it before, but to me death still isn't the worst thing in my opinion. Its for sure scary not to know what comes next, if there's a next. I'd like to just believe that its some sort of transition. I'm not a believer in any divine power and I never have been. Certainly the whole C thing has made me question it all a bit more but ultimately... I don't think it really matters. I've always sort of liked the assumption that once a person is gone... (like dead), that our energy sort of moves on. Who knows if there's a soul or some sort of consciousness that goes with it but at least I hope that whatever essence is there or not will go on. Sort of like that whole concept where "people are made from stars and will return to them when they're gone" sort of but like not literally. Maybe you catch what I mean. Maybe not. It doesn't matter.
As I'm writing this, I wonder how many people I've offended. No, I'm not sorry for my words or lack of... idk "delicacy" around "sensitive subjects". Sorry, kind of... but also I think many people just need to get over the "taboo" of certain subjects. We can't just shove everything that we don't want to talk about or hear under the damn rug because that just sucks and it doesn't make anyone feel any happier. Thats where that whole "repressed feelings" and "odd bouts of stress" are actually made of... everything you don't want to face. At least that's what I've noticed... a whole damn lot. Okay fine, sometimes it's nice to be sensitive and compassionate... it gets some people places but for me... not really. I'd rather face the stupid truth than hide my head in the sand (I might bury my head afterwards to cope but hey its just a couple days, I swear). I guess the only other time its really helpful to be... delicate is when the person is maybe not in a great condition to hear anything bad, or small children learning about heavy topics but thats a whole other debate for another day. Maybe. Who Knows. Maybe I'll go on some rant about it next.
Okay. I guess. Maybe lots of people have families that have smaller members learning about the patients condition or a loved one's passing. As a kid, my dad died when I was about thirteen years old so arguably about the time that kids start realizing what mortality is and that death is a possibility and sometimes people just won't ever come back. I sort of made my peace with my dad a long time before... we had some argument that ended in him yelling at me that he wasn't afraid of death- and that's sort of stuck with me ever since. Because I was probably about nine or ten at the time and I guess it just sort of hit me that he was talking about that final eventuality... of course at the time it did make me question a lot of things and wonder about all of that stuff. (Fortunate kid me, I didn't have to deal with it until a couple years later actually). I think that's sort of when I first really formed an opinion on my own beliefs about death and what happened afterward despite learning more from various other faiths. So anyway, when it actually happened I do remember crying because that meant I couldn't ever take back any arguments I'd ever made (we weren't on good terms)... my mom just sort of stared and didn't talk about it. Other than that night we got the phone call about it did I really ever notice anything different. Every other day just sort of meshed together and I always kept wishing my mom would talk about it but she never did. Maybe it was her way of coping and because she didn't share with me, I didn't want to share my thoughts with her. In all... it just made me angry. So my point here really is, I wish that the actual topic of death had been discussed with me, just like I wish I knew about puberty more than what my school taught me and the new random face creams that kept appearing in the bathroom. (Yeah, no one gave me the acne face washing crash course... they just told me to wash my face and not why). So yeah I'd really rather people be more candid about their shit. Saves me a lot of personal life questions but no, just because the adult isn't fucking comfortable talking about it.... saddle up because parents really should. Anyway this became much more of a rant than I expected. And no, please don't walk away with the message "oh she's got cancer and had a rough childhood" because you know what. Everyone's got their shit. This is just mine. Take care of your own baggage. This is me taking care of mine. Through writing.
Alright, new blog post here. As much as I really want this cancer to go the fuck away, I know that it's not very likely. I really want there to be some good news but alas, I can't help but feel like I am sort of at the high point and all there's left to do is go downhill... but I kind of refuse to think about that. I hope this Immunotherapy thing really works, I hope that my body has the capacity to actually fight this bitch of a cancer off.
Anyway, my point for today is that in the midst of going through something like cancer, people disappear and leave behind few- the few people that are truly there for you. Sure initially when everyone finds out they are pretty shocked and of course offer all the support in the world but the minute that there's a sense of stability... its like half the people in the room are gone... and that's fine.