Happy New Year! I’ve made it almost 3 months since my initial diagnosis which is... good, I think. I’m in a better place than I initially thought that I would be. I’m still alive. It seems like something silly to say just considering one needs to be alive to write. Had I been diagnosed later, I very well may not be here today. Had I been born even 20-30 years ago, the research into gastric cancers wouldn’t be as advanced as they are now (still could use work) and as a result I probably would’ve been misdiagnosed with liver failure from the ascites. These are all guesses of course so I can really only say that I feel lucky despite my unfortunate cancer diagnoses.
I feel like I’m sort of over one bump and now I’m going over the next one (more chemo). All this talk about what the cancer is doing to me physically and emotionally but now that I’m here in a place I never dreamed myself being but grateful for where does it leave me in terms of my actual life? So often I read books about a person with some illness/ incurable thing who come to realizations, find a profoundness to life or have an epic love story but for me, my life has shifted. I’m still a college student but I’m living at home, only taking one online class. My friends and life are all in different places. It makes my daily life a little strange. I’ve gone from taking classes every day and seeing friends at a random last minute plan to sitting at home with cancer, trying to eat enough calories to stay healthy, making sure there are no other symptoms. I’m in a weird sort of life limbo. Not really a child to be taken care of by my mom but also not quite an adult, able to leave freely and go about. I’m limited by how much energy I have on any given day, how far something is, will I be exposed to potentially sick people and the lists go on. Bottom line, it’s hard having cancer. Especially since I don’t know if I’ll ever get better than I am currently, if I’ll ever be able to go back to the life I set for myself before. Should I go back to that plan when/if all is said and done, if I even get there?— which doctors say is a long shot. It is so hard to tell what I should hold onto, how much I should or shouldn’t hope. The most frustrating part is that there really isn’t a right or wrong answer. Most of it is up to me. If I really didn’t want to do more chemo, it’s well within my right to stop it. I don’t want to die though, especially since I think my case is hardly the worst case that’s ever been in the world of stomach cancer. There are others who are suffering much more than I am... which in a weird twisted way gives me hope since the worst case maybe means less hope. So there’s that. But also it’s awful knowing there are others worse off. I don’t want any of them to suffer. It’s all a mess. Today anyway, I got my journal back from my professor which is nice because it recounts my experiences in London. At least my family will have that to read even when I'm gone... and this. Someone will have to tell them, if I can't about this blog because I haven't let them read it yet even through its all published to the internet. So what is next... tomorrow I go in for more chemo. So far it’s been alright although I know the side effects are cumulative. I hope that my break has been enough of a break that it’s still effective but also that it’s been enough time that the chemo effects won’t compound super fast. I also hope my cancer hasn’t mutated to become resistant, that would suck. So far it’s been working so I hope it will continue to work, at least enough to get me to a place where I can have more options. Thankfully my ascites is gone for now and the surgeon said that it won’t come back that fast so that’s a positive. Hopefully I’ll get to a point where the cancer can be addressed enough that ascites won’t happen again... like ever since having four paracentesis really does suck- feeling the catheter being pulled is probably the weirdest/worst aside from doctors having to try multiple times (it’s amazing they can numb the area so much that you don’t feel the cut at all). And also having a permanent drain put in would really not be fun. In any case, happy 3 months to me. New illness, same me.
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Being diagnosed as late stage cancer is scary and honestly when it happened, I really did think it was all over. I felt terrible, weak and I was so afraid to do anything because I just really didn't have the confidence that I would be able to do it. Things like showering took time, planning to go to the bathroom took effort and walking several steps to try to get food only to regurgitate it took that much effort. Then chemo started and I began feeling so much better, it really felt sort of like a miracle... I could eat whole meals again, food started to seem more appetizing and I started to feel more... normal, weak but normal-ish. Today, I feel almost as good as I did last spring before all the symptoms started showing and stomach cancer just sort of felt like a distant dream. Today though, I decided to get a second opinion at Stanford. While my doctor has never given me false hope or to expect too much, the consult at Stanford felt... sort of like a reality check. In my head, I tell myself that I'm doing well and there could be more options out there for me. I know that my chances of becoming a surgical candidate are slim but I also know that my doctors are hopeful for me. People around me tell me that they've seen spread to the peritoneum before and they've seen it go away. But really, statistically, what is the probability for that happening to me? I don't know. I won't know until it happens, if it happens. The woman I met today essentially said that she thought my chances for that were ridiculously slim. It's just difficult to see something waved in front of my face only to have so many others to what, bring me back to reality?
I know people say that we shouldn't put too much stock into statistics but its hard not to look at them especially with this diagnosis. Everyone likes to say "you're not a statistic" or that miracles do happen. I know that its possible, but I also hate to have too much or any hope just because I know that there's that much more that I could "lose". It's just so fucking dumb that at 22, my present is learning that I might have limited time. Its hard to live among so many people who have life, the one thing that might be taken away from me. The whole I would kill to live thing makes that much more sense to me now. There are times where I think that I should use this time that I have left to go and do something, but also the fear is paralyzing. Now, there is so much to be afraid of: the complications of having cancer, being exposed to any sort of disease, the chance of a freak accident happening when out- the list goes on and that's not even mentioning all the shit and chaos that might or might not be happening inside me that I can't control. Other than this damn fast growing cancer, I'm healthy. Fuck. Anyway, there's all this stuff going on about wanting to become surgical since that's really the only way to cure this damn cancer. The woman I saw today essentially told me that it would probably not be possible. I know that's also what my doctors say- that it's super rare but they haven't necessarily said that it would be impossible for me. My doctor doesn't necessarily want me to worry more than I already am and so talking about other options for later treatment has not been a big conversation. I just know the general details and know that he has many different treatment options if or when FLOT stops being effective. I suppose the balance between knowing and not knowing is thin but somehow today sort of yanked me back to how I felt even long before... back in October when I thought it was over. I know that this may just be another bump in the road and that I'll have all these damn ups and downs and that just comes with stupid news like this, but I still really hate that I drew this specific genetic short straw. It's not fair. Life isn't fair. But this is some damn torture that life has thrown at me. Somehow, I'll deal with it. There are going to be days where I'll feel shitty emotionally or physically.. or both and there will be days that are fine, and days that will be good. Somehow I'll have to learn how to cope with bad news and take good news with a grain of salt, how to handle new symptoms and how to live life in such an odd "transition" time of my life. Not quite a child/teen but not quite adult. It is so hard being in between stages in life. College life. I'm not really in a position to live on my own at the moment just because I have so many appointments, periods of time where I don't feel well enough to stay in a dorm and do college like I planned but I also haven't graduated so that means I haven't gone off and gotten myself a "big girl" job so working is out. Overall... it feels isolating even though I know I have supportive friends. So many others that I've met either online or just seen in the oncology infusion centers are older. They have a real job, they're married or with kids so it seems like they have a lot more to fight for- more people counting on them. In some ways I wish that I could be in those positions because then even if I didn't make it, I would have had the opportunity to at least begin to have that "adult" life and build upon that... maybe I still will have that, but from the stats and from some docs... there's a low chance of any of that. Sighs. Oh well. So, how much hope should I have? How realistic should I be? I always have chosen to be realistic and I see the temptations of hope. Really. I have a long road ahead of me because I do want to fight this thing because I am only 22 and I haven't gotten to do a lot of the things I only just recently started to want to do and for right now, my cancer has stayed in my abdomen without any other organ involvement that we've seen so far- except for the peritoneum and there have been patients with a lot more that have seen NED and remission so it is possible. But when there's just too much growth, the cancer can't be controlled or the side effects outweigh the benefits, then I'll stop. I'll stop not because I don't want to live, but I don't want to live a life in pain, confined to a room. I’ve always wondered what it would be like to know how long I would have on earth. Just how much life I would get to live. Now that I have some idea that it might be shorter than I maybe guessed or imagined, I wish I had no idea. Playing the waiting game sucks. Back a couple months ago, I really did think that I was going to die. I couldn’t eat, couldn’t drink and I couldn’t walk more than a couple steps without getting unbelievably tired. I suppose now I have more compassion for elders and others with disabilities. Today though, I feel pretty okay. My adidas shoes no longer feel heavy on my feet, I can walk at least a half mile or more and not feel tired so that’s pretty good.
I feel pretty good knowing that I can get up and do things now. Before, it was sort of like I didn’t want to do things more because so was afraid that I couldn’t. Being unsteady was new to me. Some days I still am but less so than a while before. I’ll be honest, I didn’t really want to shower not because I didn’t want to but more because I was afraid the steam from the warm water would make me light headed and cause me to fall. One of my friends once confided in me that they were afraid of being afraid of being found in the shower, and I guess I understand that more now. I absolutely wouldn’t want to be found lying on the ground of my shower, naked. Walking has become another important part of my daily routine. It doesn't really matter the distance so much as that I am getting up and moving and not letting my muscles atrophy. Laying in bed for too long cause my legs to feel sore in the sense that simply stretching them out feels good but also slightly ache-y. Of course there were some challenges- mostly that the air quality was terrible for a week or two just as I was starting to get into the routine. Now the air has cleared and the new challenge is the fact that its winter and the outside is pretty cold which doesn't help the neuropathy in my hands and fingers... or my throat. The first couple days after treatment is the worst, tingling sensations if I touch something too cold or like swallowing glass if the beverage is too cold. Oh well, it only lasts a couple months. Of course eating and drinking is perhaps maybe even the most important part about all of this. I feel pretty grateful for the fact that I can eat today since before I couldn't... pretty much at all. Of course I'm always worried that the effects of the chemotherapy will reverse and the cancer will take over again. Coughing up balls of mucus and food is always horrible. However, I know that many other stomach cancer patients out there still have so many issues with eating even if they aren't stage 4 inoperable like I am. Honestly though, I'm not looking forward to feeding tubes and whatnot and I know that's something that will probably be in my future just because I'm a small person and I know this disease takes most of people's body weight. I don't think I could survive really being less than I already weigh. I suppose the last thing I really want to write about is weight. I never really got into diets or really cared that much about appearance but these days I'm finding myself paying a little bit more attention to all of it. My lowest weight because of cancer was 85ish lbs at 5'0 ft which is pretty scary. I didn't like the skeletal appearance that my face took on as well as the rest of my body. My face was much less full, my bones became more prominent and my legs were no longer strong enough to keep me up for more than several minutes at a time. Anyways, the point is that I've become a lot more aware of people posting about their weight loss programs or diet fads that people keep buying into. I find it almost funny that I'm trying to do the opposite and I'm pretty annoyed with the number of people obsessing over all the numbers. I mean, there's me.. and I need to pay attention just because I don't want my health to deteriorate (the decline for stomach cancer patients is rapid), but then everyone else without serious medical conditions are out there with all this bullshit information out there. I could go on, but I'll stop there for now. Happy... HolidaysThis time of year is supposed to be happy. Christmas and whatever holiday you all believe in, they're supposed to you know, bring people together. This year, I didn't really know where I would be for the holidays. I hoped that I would be eligible for surgery, but the results of my staging laparoscopic surgery weren't what I wanted to hear. It sucks that I'm a palliative case because that means I can hope to live... but I'll be living with cancer. I don't know if my cancer will stop responding, I hope that it won't. If that does happen though, it means that I will probably have pain and difficulty eating, possibly with digestion and so on and that all would suck, require more doctors and really test what my body is capable of. I'm not sure I want to know. I've seen and read things that are unthinkable to survive so I know that a lot is possible, but do I really want to know? Given a choice, no. But I also don't particularly want to die. It sucks that if I could become a surgical case... I would have to remove a whole organ. I didn't enter 2018 thinking that I would have chemotherapy or surgery. Then again, I don't think any cancer patient ever did expect that. Anyway, holidays. I'm sort of at a crossroads, I think that I should go up for the holidays to visit my grandparents because that's what holidays are for. Family. But its stressful. I know everyone wants to see me and that our family is small so it wouldn't be so bad- I'm stronger than I was at thanksgiving and not just coming of chemotherapy so that helps. However, communication isn't everyone's strongest point. Actually, it is everyone's weakest point, even me. My grandma doesn't know what to say. There isn't much to say. Everyone is cautious at this point, if not for me then for my grandpa. He's had a couple ER visits in the last year for this and that but it's not ideal but also not surprising giving age and the fact that he's still living at home with my grandma. So. I should go and visit them because... I deserve a christmas brunch at least and so do they. I did bury my head in the sand for a bit but really... I think I should make this time count. However long it might or might not be. Cancer ramblingsThis last week has been... difficult with the whole staging surgery and whatnot. I fucking hate hospitals at this point. I hate needles and I hate pre-op. It was nightmare-ish. I wouldn't wish my experience on anyone. So here's the stupid story:
I went South SF to get my treatment and it started out badly because my surgeon, "Dr. T" had a family emergency and flew back home because a family member had passed. That wasn't bad because Dr. T called me when he could and seemed to be on top of my case. I hoped that he would pass me to a surgeon who was equal. Skill wise- maybe, I was asleep for that part but the pre-op was awful. They were over an hour behind schedule, no nurse came to update me, I hadn't met my surgeon (didn't even know his name), anesthesiologist or anything. My mom had to flag down a nurse after the expected start time of my surgery came and went. The replacement surgeon, Dr. K, came in and had the fucking audacity to suggest that because the facilities there were not as new that we thought the care was less than standard. I have a whole letter drafted out to outline the number of incompetencies that I felt happened. I haven't sent it. I don't know if I should either. It should not be an excuse that schedules were switched that the Dr. K couldn't come talk to me. It should not be an excuse to say that older facilities mean less quality of care. It should not be an excuse not to update a patient who already has anxiety. Its taken me a couple days even to write this. I really wish I could just stay in bed forever and ignore the world going by. That's depression talking. It's depressing to hear bad news about your health... especially when its more life and death related. Its also a waste to do that. I wish I was one of those people more motivated to do something... to be inspiring or do some miracle thing, but I'm pretty average and pretty ordinary. There's only one me but also... there's nothing particularly remarkable, I think. People tell me I'm so strong, but I don't really feel it. I don't feel amazing or like a fighter or as though I'm doing anything particularly incredible. I'm living. Just like everyone else. I just happen to have stomach cancer. I just happen to be putting so many toxins in my body in hopes that they kill cancer cells better than my good cells, before it kills me. I read a line somewhere recently... I'm not sure were but basically it went... kill cancer faster that something else does is the meaning of oncology at this point. Well, isn't that cheerful. At 22, no one thinks that they're going to die, they just don't. That was my 22nd birthday. Yay. So this month, December I've got some news and I'm really not sure its good or bad. Okay yes, I feel pretty lucky to have gone from October, not being able to eat anything solid and subsisting solely on popsicles and cranberry juice. Today, 4 rounds of FLOT chemotherapy later, I'm eating full meals! That's pretty amazing, I guess, I think. That's what people tell me. I just think of it as normal... because today I feel almost normal except for the dull aches in my legs when I walk... reminding me of just how much muscle I've lost. I can feel how heavy my shoes are. Maybe I'll start exercising actually... but for now I've been going on walks. I've thought about writing too as an outlet but it's only now and today that I've pulled out the computer and started writing. I guess this week, today, for the first time in a while, I've felt relatively normal. Despite the cancer.
Anyway, this week has been difficult. When I was first diagnosed, they told me surgery was not an option. It's not like anyone ever wants surgery or asks for it but in this case it meant that this also meant that my treatments wouldn't be curative, they would be palliative. But now, since my ascites hasn't reoccurred since round 1, there might be hope to change that. I really do want to believe it but there won't be an answer until surgeons actually take a look inside my abdomen to see what's going on. So for now, I'm taking my good scan results as a good thing... but I'm cautious to even hope to change paths since it's... rare. But it also makes me mad. Why? Because I was starting to accept the fact that I would live with stage 4 and chemo would essentially be a life line to keep the cancer at bay.. at the very least. I was learning to live with the fact that I wouldn't ever grow old and have a family, that my whole family would live with me being the first to go of all of them, over the age of 60. That's such bullshit. I fucking can't believe it. My grandfather is 91 and his 22 year old granddaughter might die first. That's not how life should go, right? I'm at home, with my mom. I'm so grateful to her and the fact that she's dropped everything to help me. Its not fair that she has to do that again. That was supposed to be 18 years and then let me loose but instead she gets me back just as she wants to retire and consider traveling for herself after she's given so much. That's not fair. Of everyone, she gets the worst deal... I mean I know she wouldn't ever take back adopting me but she's had to go through so much. My dad, her husband died a couple years back and now me, and her parents are nearing a time where they perhaps should go to a home despite being fairly mobile for their age... although it's getting more and more difficult for them. As for me, I've lived a relatively risk free life. I don't do drugs, I can't even handle alcohol so drinking is out of the question for me, I eat fairly well with the exception of breakfast and of all things its me that gets cancer. Life is just so not fair. I watch everyone else on the street- all the damn smokers, people running around being reckless and just absolutely hate that these random people doing the smallest things that they should know put them at risk for xyz... and I just think, they're throwing away what life they have. At least they have life to live and me... I'm just handed the death card. Everyone dies... except I know my cause... and that it will probably be sooner rather than later. But also, now at least I get time... to see people and friends and do things that I think matter but having the door to death looming so close ahead makes it that much more difficult. So is knowing a blessing or a curse? Maybe both. I just dread the medical journey I have to face but I also want to have the time... and the chance at having more, a life that is not just "getting through college to get a job" as I was living before but one that is full of good and meaning. I just don't want any false hope. |
JiyaJust a 22 year old and her stomach cancer. Archives |