.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).
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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. All the time there is always something to write and yet nothing. I haven't written in the last month or two mostly because... well, it was fairly uneventful. Uneventful isn't a bad thing though... it is good mostly when it comes to any illness or disease. Today however, I got the news that my first line treatment is not working or at least it's starting to be less effective with some new spots lighting up and some mild ascites. How great is that and all over again I'm confronted with my own mortality.
They say that death is a consequence of life- or course if one lives then it has to die, its the order of things and to think that I could be the one to escape the clutches of death even after being marked well, that would take some miracle and I'd probably suffer from some survivors guilt thing. Sometimes those miracles happen though but I happen to be a bit more cynical than that... No, I don't want to die, no one does because that really is all we as people have if you take away the extra additives of luxury, but do I secretly want to rest now? yes, I want this nightmare to end. I do know that is not what my loved ones want to hear. Of course I want to fight to live but I'll also be happy when this is all said and done whether its several months from now or years. But I do know that I don't want ascites again, I don't want a feeding tube, or to be hooked up to some machine, or to feel pain. The actual dying part seems to be the easiest but the journey to get there not so much. For now, I'll be on immunotherapy which isn't standard because... well, I'm Asian and there are some Japanese studies out there that show some added months with it used as second line treatment but I'm also scared that in the time my immune system takes to respond the cancer will just keep growing... three months and we'll see what happens. Whatever it is, I hope that immuno works despite what all the results seem to show. Buying a couple more weeks/months... is worth it I suppose. I worry that I'll be wasting it... that I have wasted some of it. But I also needed to just rest in bed and not care about the rest of the world... but I also haven't done a lot except maybe do some other creative writing. We all spend so much time trying to ward off death like it’s something that isn’t natural and never wanted. I think that a part of death is not wanting to let go of everything and everyone and other parts are just fear of the unknown. What is known is that dying is something that all people will go through and will face. We tend to hold onto life so much that what is forgotten is the time to spend living.
I’m sort of at some road here where I could fight off death maybe for a while longer but I will inevitably die and most likely from this damn cancer. I’m not sure that even if I get to a place where any surgeon will touch me that I’ll want that. There will be so many life adjustments that I’ll have to make and maybe that sounds like a dumb reason but I’m just afraid that after all of this, even if so do come away with my life that I won’t ever feel healthy again. Maybe I’m just afraid to continue living because I’m afraid of all the future suffering. Perhaps I would feel fine with dying of cancer if I didn’t know that was the cause. On some level, I’m grateful to live in this time because there are so many options- no true right one, but they are available. On another though, I wish I’d been born back in the 1900’s when cancer was still maybe an unknown and I would’ve just died way back in October/November, maybe it was my time back then as silly as that might sound. It’s true that I’ve been feeling better these last couple weeks but I don’t know how long it will last and that’s just the problem, I want it to last so badly. I just want to go back to ignorance. But I’m here now and I have to face all of this. I know that I’ll just have to face more mortality again sooner rather than later and it seems almost cruel to dangle good things in my face if I can’t have them for a good long period before going to rest forever. Now my life is learning to navigate the healthcare system, how to get doctors to listen to me and how to take the information and make some sort of informed decision. I know my dad oncologist does take my case seriously, he’s told me about a of the research and whatnot that goes into all the gastric cancers. He’s seen his fair share of them... even a woman about 17 who is no longer here with us. I sometimes wonder what my PCP thinks about all of this. I switched to her specifically because I never felt like my health concerns were too priority. I wonder if doctors took a collective look at my medical complaints and would have seen my condition before it developed to stage 4 with metastasis in the ascites. I guess I’ll never know that. I don’t really blame any of my doctors anymore because really the US has honestly had other issues it’s got to resolve. On some level I wonder what might have happened if so hadn’t been adopted, would I have had the same risk factors? Would doctors have caught it earlier because of the heavier screening they do in Asian countries? I’ll never know any of that either. Where I’m at now... probably due for another round of scans honestly, will it be PET or a CT? Who knows. Will I have another staging laparoscopy? Who knows... maybe that’s sort of what they set up for me. I’m a bit worried about the time they took between chemo rounds 4 and 5 but I don’t think that I could have taken it. This 6th round feels like it’s beating me up a little bit or maybe because I was so sick before I didn’t realize it was the chemo drugs. I don’t know. I do know that before the ascites wasn’t present so that put me more towards potential surgery/HIPEC but my PCI score wasn’t what they’d hoped for so that meant more chemo. Funny how all these flow charts seem to work. Unfortunately, even the Japanese protocols seem to agree with everything so far. If I do go through surgery... I’d want them to take as many lymph nodes as possible because I just have a feeling that they’re loaded. Back in August I had one that was inflamed... but the head and neck surgeon thought it was fine... normal even. I used to have issues with my tonsils too but all of that seems to have gone away. I think that most of my health problems can go back to that damn H. pylori infection and a cruel twist on my genetics. What a lousy roll of the dice for me. |
JiyaJust a 22 year old and her stomach cancer. Archives |