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.
0 Comments
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. September 2018 I thought I was going to go back to college to start my last year of college. It was going to be epic. Why? Because I planned on rooming with my best friend, down the hall would be my sorority "little", some other sisters, and a couple other friends. I only have about 5 more classes to complete my major so filling up credit hours as a full time student would be easy. That's what I thought. Of course, life had other plans for me. At first, I thought I was bloated- you know as most women experience in life but for some reason my bloating was getting bigger.. and bigger. About two weeks had passed and my abdomen was so distended it looked like I was about 8 months pregnant. Yikes. Then on my birthday, I went to eat Korean BBQ with my friend- my appetite had already decreased so much but I thought this would taste good and help. Nope, for the first time, I threw up all the food I'd eaten within 10 minutes. Damnit. After that, I made a doctor's appointment. My appetite, throwing up food, the bloating, something was wrong. I visited my doctor's office more than once and they wrote me off as being constipated and gave me some anti-gas medications and stool softening recommendations. No luck. It wasn't until I visited a gynecologist who actually decided to feel my abdomen and said that I probably had a tumor on an ovary and ordered a CT scan. Well, the fluid in my abdomen made me so uncomfortable that I ended up going to the ER where they finally took out 3.5L of fluid, called ascites. I had a CT and an ultrasound of the area and nothing. The shipped the fluid off to be tested. It seemed to take forever before my doctor got back to me saying that the fluid had several suspicious cells but was inconclusive and ordered an endoscopy. I wasn't really sure what to expect but since things didn't seem to be going well, I just hoped for something minor. No. I woke up from the procedure and the nurse handed us a sheet of paper that said there was a mass in my stomach that was concerning for cancer. Fuck. I don't think that I fully realized the situation then. I sort of refused to believe it.
October 11th, I will never forget that day. I'd decided to go to the ER once more because the fluid had built up again (another 3.5L), and that was when I got the call back from the gastroenterologist. She had the results. Cancer. Sure cancer had been something thrown out before but I just didn't want to believe it but this call made it real. Not just early cancer, stage 4, metastatic. After I got the call, my mom who was sitting at the foot of my hospital bed burst into tears. She's really not the type of person to cry and scream but she did. Even today, two months later, I can't really say much about how I felt that day. I cried a lot. There was one ER nurse who was particularly nice. When my mom stepped out of the ER, she came in and we cried together. She gave me a listing of support groups. I was sent upstairs to the hospital where I met my oncologist who was kind enough but also serious. He explained gastric cancers to me and of course my options. I think the thing that reassured me the most was that he said he didn't believe that cancer patients should be in pain. Back then in October I could barely eat. I visited my college friends before starting chemotherapy which was good. It was nice to see everyone but I was scared. So scared. I knew that I was getting thiner and I wanted to eat, I really did but I couldn't. I would throw foods up or things just didn't sound good. At that point, I was so tired. I honestly didn't think I would make it far. Stage 4 cancer. How did it progress so fast? I don't know and maybe I'll never know... |
JiyaJust a 22 year old and her stomach cancer. Archives |