Life is predictably unpredictable. The road comes up, the road goes down, opposites, relievers, resting, charging. Some nights I can't sleep at all from prickly, hot, sweaty, itchy skin and then I end up napping at 7 pm only to be awake now, writing to get sleepy again.
To live in the comfortable tidal zone, the ocean washing fore and aft, songs like Fire and Rain play in the background, underlining the poignant clarity of each shiny, tarnished, beautifully tragic execution of this here life. For good, or for bad. To stay in this zone, isn't that the goal, of the comfort-seeking human? Unlike purification by restriction, by having less. We always want more comfort and it makes us spoiled, it doesn't lead to happiness, because seeking happiness through comfort is a trick.
I don't like leaving the tidal pools, but nature made me a natural-born swimmer. Open ocean is where one earns their chops. Nature is a wise, playful, patient master of the plan who can seem somewhat cold-hearted at times. She isn't mean, necessarily, she just lets things happen, she does not intervene. This can be seen as cruel, but it actually is not. It just is.
I've been existing within the comfort of my own denial and self-inflicted positivity. This is a burden, make no mistake. The whole "be positive" job I have, the one we all have in the face of calamity, is just that. It's, being "on", but not just for others, for yourself as well.
Sometimes life is like a Damien Rice song. As much as this guy makes me want to slit my wrists sitting on the tallest mountain at dawn clutching my most masterfully gorgeous letter of resignation, at another turn in time his music can affect my mood by allowing a kindred feeling to blossom that's both supportive and comforting. Relativity is the key to the moment. You must know this to keep perspective.
Today, at my onc. appointment I saw my mortality through the clinical eyes of another. I feel positive about things mostly, unless I'm having a physically poor day and have to stop doing everything. I hate those days, I don't hate them, I just hate that they remind me of things I don't like to think about. I like being alive, for better or worse, this is all I have, but seeing the pained expression of my doctor as we discuss where she can direct me, should I choose to take the assignment, really did me in today. I felt like I was losing. There is no data for people with my dx for the conventional treatment I am doing. It's a hell of a lot like the holistic road I'm taking too. There is no data, so basically nobody knows anything, nobody can tell me anything, there is no assurance. Unless I can afford a real treatment center, I am playing at being my own doctor still.
I haven't let myself cry. I have been brave, strong and hard-working since the liver dx. I'm trying to plan a fundraiser that's happening in less than one month, I work as a waitress very late hours not getting home before 1:30 a.m. most shifts because I can't fulfill a commitment to an animal job, I have a full schedule of holistic food and medicine to make everyday, animals to clean feed, and love, a house to keep up, exercise to do daily, the new weight training classes are a wonderful gift- but tiring, shopping, research, leaving the house (!) so many days I don't, I can't.
My sister's best friend just died from breast cancer, just. I can't even, right now. Sometimes things I don't want to feel I just don't feel. I will do that later. With my own stuff and thinking of the pain my sister feels, I just can't. I haven't caved in, I don't want to.
I am good at compartmentalizing my pain, I come to play. There has got to be a time to grieve though. When is the right time to grieve for oneself? How about never, is never an option? I don't have time, I don't have as much help with this event this time around. I am trying to do more myself this time, I hate feeling like a burden. When I think of previous sacrifices and generosity I have been bestowed with from past fundraisers, it's crazy, little mounds form hills, it takes a village really. Unfortunately, cancer is a greedy MF and always requires more more more.. I am so sorry that it does and that I have to include others in this thing.
Is all the effort worth it? How valuable is my life? Do I matter that much? In two generations nobody will know who I was, so think about that. A mere blip. Why do I try so hard to stick around, maybe being dead is great. Maybe being dead is so great I should stop fighting and just let go. There are answers out there but they all seem to cost a fortune, does anyone want to give me a fortune? I dream of working with my beloved animals again soon, but it seems less and less like a reality, more like the dream I had before sacrificing my life to learn how to care for them. I have the skills, but now I don't have the time tickets.
Metaphorically speaking, I cut off my hair to afford a beautiful pearled comb that now has no hair to adorn.
I hope tomorrow is a better day. I have a lot to face and get through. I ask that strength come from something greater than myself and money falls out of the sky. I do so want to get better so I can focus on someone other than myself. I need to help others, my foundation is dying for attention.
I was misdiagnosed at 30 years old being told I was too young for breast cancer. I now have stage IV cancer. I treat myself with alternative + western medicine. It's been an uphill battle all the way, but I have stopped to smell every rose and pet every dog I see. I've truly loved being alive.
Friday, July 8, 2016
Monday, March 14, 2016
Cancer cancer blah blah blah
None of it makes any sense, shouldn't I be talking to a live human about my pains and fears and shit? When in the company of friends I avoid talking about cancer, or I brush it off and switch the focus back to them. People like to talk about themselves, so it's easy. I don't like to be the center of attention. The Observer is much more interesting of a viewpoint. The inner scientist in me begs invisibility. To sit in an audience is my speed more than being on stage.
I don't know how to talk about cancer except in long rambling Voxers to V, repeated monologues with some new detail added in about my current pain, or lack of something. When it comes to the blog it's all I seem to write about. I want to get stuff off my chest in a way that allows people to choose whether or not they want to learn about my personal battles on the regular. The reason I post a plain link and don't write an extra intro is to keep most people from clicking on it. I cringe every time I click on this to share it. Relying on the short attention spans of most people is how I deal with the feeling of exposure. My old blog was anon. It costs money to keep it open. It's been too long since I let it lapse- now it's gone.
There is enough breast cancer awareness. I think the best way I can shine a light on the future of breast cancer treatment is to empower people, this is your disease, not Pfizer's, not Merck's, not Bristol-Meyers. Doing what I can to make my disease a chronic situation is one way, to overcome it is the coup de grace, is the golden ring. I think where I drop the ball is not sharing how I've gone about it. My story is abundantly valuable, even though at the current moment I feel like a failure and my head hurts. I have had cancer now for over 20 years, that alone is amazing to me. How am I still alive?
I don't know how to talk about cancer except in long rambling Voxers to V, repeated monologues with some new detail added in about my current pain, or lack of something. When it comes to the blog it's all I seem to write about. I want to get stuff off my chest in a way that allows people to choose whether or not they want to learn about my personal battles on the regular. The reason I post a plain link and don't write an extra intro is to keep most people from clicking on it. I cringe every time I click on this to share it. Relying on the short attention spans of most people is how I deal with the feeling of exposure. My old blog was anon. It costs money to keep it open. It's been too long since I let it lapse- now it's gone.
There is enough breast cancer awareness. I think the best way I can shine a light on the future of breast cancer treatment is to empower people, this is your disease, not Pfizer's, not Merck's, not Bristol-Meyers. Doing what I can to make my disease a chronic situation is one way, to overcome it is the coup de grace, is the golden ring. I think where I drop the ball is not sharing how I've gone about it. My story is abundantly valuable, even though at the current moment I feel like a failure and my head hurts. I have had cancer now for over 20 years, that alone is amazing to me. How am I still alive?
Saturday, March 12, 2016
Bad Burrito
So much for writing when things are good. When things are good, I'm out in it. Today I am a snail with salt sprinkled on it. The only reason I'm writing is so I don't go to bed yet, it's not sundown. My head is exploding in pain, I have several headaches.
Today I sat in weak sun amidst intermittent wind swirls. The birdies now know that I'm serving, they are so cute. The little birdies reveal their level of comfort already by how close they come. I hope the hummingbirds come back, they don't see my Open sign. The first day I moved in an Anna's Hummingbird gave me a long scan, I got Google-mapped hummingbird style. It also cruised the pink hanging glass candle holder. I rushed to fill my feeder with homemade sugar juice (uh 2 weeks later) so where are they?
I had plans to see a friend but unless someone is coming to massage my feet, spoon feed me, lightly play with my hair and not talk, I can't hang. That has never actually happened, so I have to turn people away. It's hard to know what to do to help someone in a low like this. Listening to someone talk is asking for energy I don't have. Not only do I not have enough for anyone else, I don't have enough for me. When I feel like this, it's hard to imagine being better.
It's my habit to turn people away but at the same time I fantasize about someone stepping in to take over. People seem very confused as to what to do or how to help. The perfect support person would be a cancer survivor who is also a nurse. Nurses know how to step in. Thank you, nurse community.
After PT for my shoulder I sat waiting for a car service that should have taken 1 hour, but took 3. During the wait, I ate poisoned food. They took money off the service but the damage was done. In that time I got cold to the point of shivering and my BP dropped. It still surprises me that I can get so jacked up. I used to run circles around people, I had boundless energy. I was manic, almost, in my habit of pushing the physical limitations of my body and sleep deprivation. I never wanted to sleep, just stay asleep once there. I ignored pain, and exhaustion. Now, I get my ass kicked by one long day. And a fucking burrito.
I know this will change. But this is so hard without soup. I don't have any soup. Soup heals all ails. If there were a soup delivery service, they would know the name Kleczko. They would be like: Will you be ordering the usual today, homemade chicken noodle soup, Polish grandma style? Yes. Extra noodles. I miss you Regina, you teeny tiny person who survived WWII with 2 small kids and no husband, supporting the family even. Where is that strength in me right now? I know it's in there. I see you.
Today I sat in weak sun amidst intermittent wind swirls. The birdies now know that I'm serving, they are so cute. The little birdies reveal their level of comfort already by how close they come. I hope the hummingbirds come back, they don't see my Open sign. The first day I moved in an Anna's Hummingbird gave me a long scan, I got Google-mapped hummingbird style. It also cruised the pink hanging glass candle holder. I rushed to fill my feeder with homemade sugar juice (uh 2 weeks later) so where are they?
I had plans to see a friend but unless someone is coming to massage my feet, spoon feed me, lightly play with my hair and not talk, I can't hang. That has never actually happened, so I have to turn people away. It's hard to know what to do to help someone in a low like this. Listening to someone talk is asking for energy I don't have. Not only do I not have enough for anyone else, I don't have enough for me. When I feel like this, it's hard to imagine being better.
It's my habit to turn people away but at the same time I fantasize about someone stepping in to take over. People seem very confused as to what to do or how to help. The perfect support person would be a cancer survivor who is also a nurse. Nurses know how to step in. Thank you, nurse community.
After PT for my shoulder I sat waiting for a car service that should have taken 1 hour, but took 3. During the wait, I ate poisoned food. They took money off the service but the damage was done. In that time I got cold to the point of shivering and my BP dropped. It still surprises me that I can get so jacked up. I used to run circles around people, I had boundless energy. I was manic, almost, in my habit of pushing the physical limitations of my body and sleep deprivation. I never wanted to sleep, just stay asleep once there. I ignored pain, and exhaustion. Now, I get my ass kicked by one long day. And a fucking burrito.
I know this will change. But this is so hard without soup. I don't have any soup. Soup heals all ails. If there were a soup delivery service, they would know the name Kleczko. They would be like: Will you be ordering the usual today, homemade chicken noodle soup, Polish grandma style? Yes. Extra noodles. I miss you Regina, you teeny tiny person who survived WWII with 2 small kids and no husband, supporting the family even. Where is that strength in me right now? I know it's in there. I see you.
Thursday, March 10, 2016
But First
It feels a bit like regret. I never used it when I had it, but now that it doesn't work I swear I would use it. Convenience is often taken for granted. Because we know something is there for us we don't feel the need to appreciate it. It will be there later.
I miss my radio remote control. I miss its slim, compact little body that fit right in my hand. I need to replace the dumb little wtf battery. I can never remember to buy it because there are, like, 10 different little battery thingies that look exactly like that one. The cool thing about XM radio is the replay option. This song is transporting me back to ceremony in Peru. But I am not getting up a 3rd time to play it.
I'll call him tomorrow. I'll see her again. I'll mail that card. Even though I think about her everyday I can't get to writing that card, I'll have time later. I have a few important people in my life who deserve a bucket load of cards and hugs on this very day, more than that, but I'm so wrapped up in my own life to get to it. It needs to go on a LIST. That's how lame things get.
Things are much better for me here. I was living on an island. My people are here and my medicine is here. I can have a conversation about things totally normal in my world and I'm not looked at like I'm asking for a Moscow Mule in Mexico, 2015. They will catch up, give them 5 years, it will be a real thing.
I've moved back to one of my favorite zones but I still have to miss my far flung friends. There are some really struggling right now, it feels heavy in my chest to think about it. I want to be rich so I can make them do what I want. I would force them onto planes, make them go where I want them to, to get better. The sick ones anyway. The ones who are well would also get a plane ride, and for fun a coffee enema, so they don't feel left out.
I am sorry my life is really complicated too. I feel lame and disrespectful to not be there for those who have been there for me from time to time. I see you. I do. I feel like I'm under a lot of file folders with papers all needing to be filled out and I am behind in my job. Also, Gael just pooped one of his human-sized man-poops, the house is on fire, and I left my car running, locked, with a friends baby inside. I'm standing in the middle of the living room stepping left, no, then right, no, which way, what's first, what is most important?
I could see a light at the end of the tunnel recently but now there's a new turn in it. My list is long again, but I feel good and everything is improving daily. I am formulating plan number 33. My tumor markers are coming down, I have a lot less pain, I am able to swim and bike and possibly jog a little again. Stage IV is a lame label, nobody can ever tell I'm "sick". I have low red blood cells though because of my bone cancer gobbling them up. It's the reason I got such altitude sickness in Peru. It felt like a pipe was being shoved through my chest and stomach. No more hikes at 14,000 ft. on the day following arrival (note to anyone with pleurisy or low red cells).
It's hard to answer the question : How are you doing? What's going on with you?
As long as I've been fighting this actively, 11 years, I still have trouble answering that question. I can't seem to separate how I feel, with how I am handling right now, with how the last month, or months, have been, with what my bloodwork or scans said most recently. Sometimes I give the clinical answer and sometimes I go with how I am doing at that minute. The answer: Well, I'm technically slowly dying but, Uh, today I felt good. I hit the usual wall at 3:30 but I didn't sleep last night for more than 2 hours initially, after that there was no sleep. (There's a tiny pea underneath my mattresses, I just can't sleep unless everything is perfecK)
No, I can't sleep because my legs are flogged with heat in an alternate universe, sunburn, fever, sweats. I can't sleep through that. My lady's maid forgot to bring the cool washcloth. I don't have an attendant. Any extras lying around, I'll pay you in Kannacoco and homemade coconut kefir? I make stuff. Krissy makes stuff. You want to see me make stuff? I make lots of stuff. I'm always onto some new project. Problem is, Instead of perfecting something to the tenth degree I just start a new project. I am never bored. Reading, writing, learning, teaching, doing. How can anyone ever get bored? I call being bored, resting.
To me, writing is my relaxing place, it's close to resting. It's easy and dumb, like T.V. I can switch channels, nothing has to make sense, just be entertaining. Nothing's planned, I like to zone out on the keyboard. The best things I can think to write never get written, I like it that way. It's like taking out your phone or camera every time you are doing something that might be fun, you're interrupting the flow. When in a great moment you are there, you should know it is not to be fucked with. The best way to kill a buzz is to ask everyone to stop what they are doing to hold a smile. Take a picture of your friend, why do you have to be in it too every time? One a month, or one a week okay, not every day. My take on selfies -- making a bland moment appear fun, because if you were having real fun, you wouldn't be clutching your phone like a crackhead with a bindle, jonesing for the first opportunity to, binge - on your drug. The selfie. That's right up there with the selfie stick. You. Are. Bored.
In all fairness there are times to take them. Road trips, llamas by a fence, the sneakie selfie, meeting your idol, the moment before pulling a prank, a concert. They key here is to keep it to a minimum. Do one better and get some friends who can take your picture for you. In the old days we would ask a passing stranger to take the photo, in the process they got to feel involved in making our memory. I always enjoyed that.
I have a new treatment place with the latest and greatest stuff coming out of Swiss-land. Not many places are doing this current treatment because it's so new. The biggest moment came today when my newest doc told me he is proud of me for all I have done to manage the cancer on my own, that I have turned it into a chronic disease. I felt proud. I don't get much credit from my own cancer community, not to mention any doctors. It's weird, my path is such a no-brainer, but I still feel alienated. I have never gone with the herd, but I share DNA with the herd. To be recognized is the same thing as being shown love. I am cut off by most of my cancer community because they don't respect or understand what I'm doing. It hurts, but mainly I fear for them because they are ignorant.
Nobody, except another person who has stubbornly pursued a natural path, can understand the isolation and judgement that comes from other cancer patients. I may not outlive this disease, but I know I have made the right choices for me, I have a good quality of life mostly. If I could go back and undo the chemo I did in 2005, I would with no hesitation. I educated myself during a time when even the internet had very limited resources for people who thought like me. A few years later that would start to change, but back then, nothing, not even a young survivors support group. I was "yelled at" for promoting education and holistic medicine in online groups. The ignorance is beginning to lift more and more. I am happy. This country is the North Korea of cancer options, except most people here are brainwashed by the system while at least North Koreans know their country is holding them hostage.
On a lighter note, I have a Kangan water rep giving me free water. Free magic water. In many many ways I am held, covered, protected by the people I have surrounded myself with. To learn how to manage deep hurt and pain and not isolate because of it is a hurdle I am always being challenged to clear. I am cherished even though I talk a lot of shit-- it's all in fun, but if you can't laugh at yourself don't go to a stand up comedy club, they will seek you out and make you so uncomfortable. And don't heckle the emcee, unless you came to play. I rendered one speechless, the next second I was like, Oh shit, he's going to burn me. He didn't know what to say and instead of fucking me up, he complimented me. That was fun. If I had bigger balls, or a really large labia, it would be super fun to try stand up. You can write it all ahead of time, it's not like you just get up there and start talking. I would do it if not for hecklers, deer in the headlights. I would become an alcoholic cokehead in one week.
I miss my radio remote control. I miss its slim, compact little body that fit right in my hand. I need to replace the dumb little wtf battery. I can never remember to buy it because there are, like, 10 different little battery thingies that look exactly like that one. The cool thing about XM radio is the replay option. This song is transporting me back to ceremony in Peru. But I am not getting up a 3rd time to play it.
I'll call him tomorrow. I'll see her again. I'll mail that card. Even though I think about her everyday I can't get to writing that card, I'll have time later. I have a few important people in my life who deserve a bucket load of cards and hugs on this very day, more than that, but I'm so wrapped up in my own life to get to it. It needs to go on a LIST. That's how lame things get.
Things are much better for me here. I was living on an island. My people are here and my medicine is here. I can have a conversation about things totally normal in my world and I'm not looked at like I'm asking for a Moscow Mule in Mexico, 2015. They will catch up, give them 5 years, it will be a real thing.
I've moved back to one of my favorite zones but I still have to miss my far flung friends. There are some really struggling right now, it feels heavy in my chest to think about it. I want to be rich so I can make them do what I want. I would force them onto planes, make them go where I want them to, to get better. The sick ones anyway. The ones who are well would also get a plane ride, and for fun a coffee enema, so they don't feel left out.
I am sorry my life is really complicated too. I feel lame and disrespectful to not be there for those who have been there for me from time to time. I see you. I do. I feel like I'm under a lot of file folders with papers all needing to be filled out and I am behind in my job. Also, Gael just pooped one of his human-sized man-poops, the house is on fire, and I left my car running, locked, with a friends baby inside. I'm standing in the middle of the living room stepping left, no, then right, no, which way, what's first, what is most important?
I could see a light at the end of the tunnel recently but now there's a new turn in it. My list is long again, but I feel good and everything is improving daily. I am formulating plan number 33. My tumor markers are coming down, I have a lot less pain, I am able to swim and bike and possibly jog a little again. Stage IV is a lame label, nobody can ever tell I'm "sick". I have low red blood cells though because of my bone cancer gobbling them up. It's the reason I got such altitude sickness in Peru. It felt like a pipe was being shoved through my chest and stomach. No more hikes at 14,000 ft. on the day following arrival (note to anyone with pleurisy or low red cells).
It's hard to answer the question : How are you doing? What's going on with you?
As long as I've been fighting this actively, 11 years, I still have trouble answering that question. I can't seem to separate how I feel, with how I am handling right now, with how the last month, or months, have been, with what my bloodwork or scans said most recently. Sometimes I give the clinical answer and sometimes I go with how I am doing at that minute. The answer: Well, I'm technically slowly dying but, Uh, today I felt good. I hit the usual wall at 3:30 but I didn't sleep last night for more than 2 hours initially, after that there was no sleep. (There's a tiny pea underneath my mattresses, I just can't sleep unless everything is perfecK)
No, I can't sleep because my legs are flogged with heat in an alternate universe, sunburn, fever, sweats. I can't sleep through that. My lady's maid forgot to bring the cool washcloth. I don't have an attendant. Any extras lying around, I'll pay you in Kannacoco and homemade coconut kefir? I make stuff. Krissy makes stuff. You want to see me make stuff? I make lots of stuff. I'm always onto some new project. Problem is, Instead of perfecting something to the tenth degree I just start a new project. I am never bored. Reading, writing, learning, teaching, doing. How can anyone ever get bored? I call being bored, resting.
To me, writing is my relaxing place, it's close to resting. It's easy and dumb, like T.V. I can switch channels, nothing has to make sense, just be entertaining. Nothing's planned, I like to zone out on the keyboard. The best things I can think to write never get written, I like it that way. It's like taking out your phone or camera every time you are doing something that might be fun, you're interrupting the flow. When in a great moment you are there, you should know it is not to be fucked with. The best way to kill a buzz is to ask everyone to stop what they are doing to hold a smile. Take a picture of your friend, why do you have to be in it too every time? One a month, or one a week okay, not every day. My take on selfies -- making a bland moment appear fun, because if you were having real fun, you wouldn't be clutching your phone like a crackhead with a bindle, jonesing for the first opportunity to, binge - on your drug. The selfie. That's right up there with the selfie stick. You. Are. Bored.
In all fairness there are times to take them. Road trips, llamas by a fence, the sneakie selfie, meeting your idol, the moment before pulling a prank, a concert. They key here is to keep it to a minimum. Do one better and get some friends who can take your picture for you. In the old days we would ask a passing stranger to take the photo, in the process they got to feel involved in making our memory. I always enjoyed that.
I have a new treatment place with the latest and greatest stuff coming out of Swiss-land. Not many places are doing this current treatment because it's so new. The biggest moment came today when my newest doc told me he is proud of me for all I have done to manage the cancer on my own, that I have turned it into a chronic disease. I felt proud. I don't get much credit from my own cancer community, not to mention any doctors. It's weird, my path is such a no-brainer, but I still feel alienated. I have never gone with the herd, but I share DNA with the herd. To be recognized is the same thing as being shown love. I am cut off by most of my cancer community because they don't respect or understand what I'm doing. It hurts, but mainly I fear for them because they are ignorant.
Nobody, except another person who has stubbornly pursued a natural path, can understand the isolation and judgement that comes from other cancer patients. I may not outlive this disease, but I know I have made the right choices for me, I have a good quality of life mostly. If I could go back and undo the chemo I did in 2005, I would with no hesitation. I educated myself during a time when even the internet had very limited resources for people who thought like me. A few years later that would start to change, but back then, nothing, not even a young survivors support group. I was "yelled at" for promoting education and holistic medicine in online groups. The ignorance is beginning to lift more and more. I am happy. This country is the North Korea of cancer options, except most people here are brainwashed by the system while at least North Koreans know their country is holding them hostage.
On a lighter note, I have a Kangan water rep giving me free water. Free magic water. In many many ways I am held, covered, protected by the people I have surrounded myself with. To learn how to manage deep hurt and pain and not isolate because of it is a hurdle I am always being challenged to clear. I am cherished even though I talk a lot of shit-- it's all in fun, but if you can't laugh at yourself don't go to a stand up comedy club, they will seek you out and make you so uncomfortable. And don't heckle the emcee, unless you came to play. I rendered one speechless, the next second I was like, Oh shit, he's going to burn me. He didn't know what to say and instead of fucking me up, he complimented me. That was fun. If I had bigger balls, or a really large labia, it would be super fun to try stand up. You can write it all ahead of time, it's not like you just get up there and start talking. I would do it if not for hecklers, deer in the headlights. I would become an alcoholic cokehead in one week.
Sunday, March 6, 2016
The Hurricane
Damn. I only just read my last post, months back now, I think in December. I know way too much about this disease. Nothing surprises me, death and dying is the norm. I am not immune to fear myself, it invites itself into my head, but then again I have mastered it over and over. I just have to hold on.
It seems like I am watching the same scene play out whenever someone is dying, especially when they are famous. So much shock and sadness until the week passes and everything goes back to normal again. Until, the next person is dying and everyone is so upset again. And shocked. Can we just cut out the middle man?
How to share your disease with the public is a choice as myriad as the number of personalities out there, and the social media outlets supporting them. Bowie was private. He chose to deal with his cancer on a very secretive level. Others share their cancer trip with daily selfies, thumbs up, smiles. I find it interesting, as a study upon human nature. Why do some people seek privacy with this disease while others seek celebrity? Is it as basic as it being a coping mechanism, or does the current social media monster encourage the average person to believe they need to be somebody?
I've thought about this a lot over the years. I am always stuck in this feeling that this is mine, this is very personal, yet I am not ashamed of how I feel and what I have to do to live, therefore I should share it because what I am doing is unique.. except that oversharing is the hallmark of this current world we live in. People won't stop sharing. I am sick of people, and I am a people-person. The needy, self-important, shameless curated lives we read about everyday isn't real life. This Selfy Culture celebrates the self-obsessed. It's the norm now.
I am not an allopathic-centric medicine patient, so why not post everyday in hopes to "help others" so they know there isn't just one way to do things? Conventional-only stage IV cancer treatment is the wrong direction, in my opinion. In my opinion, it's a dead end with a lot of suffering in the middle part. People die eventually from over-treatment. It's fucked up. But I am not a poster. I'm not a seer or a superhero, I'm as lost and searching for answers as the next cancer patient. There's just something in me that won't let me follow the herd. The truth is what I seek. What is offered if I go the other way is a sure death sentence, this way-- no tellin'. I've heard all kinds of survival stories, I've met people who have beat stage IV, but will I be one of them?
I deserve credit for what I do. I work my ass off and also can speak for both types of therapies, I've done both. When I step off the holistic ride, I suddenly have all the time in the world. It's not great time, but it's not work. Holistic cancer treatment is a non-stop Think-A-Thon, Plan-A-Thon, Work-A-Thon. You don't have the luxury of just suffering, eeeh that's a joke -- suffering is not a luxury, as a cancer patient, it's a right! Suffering through painful treatment side effects suck but if anyone thinks doing holistic is side-stepping suffering, think again. I still suffer, but I live a much better quality of life physically than if I were to do only drugs. Sometimes though, things still go terribly wrong, and I think I'm dying.
The worst part of the holistic direction is the feeling of personal responsibility. The heavy burden of guilt we live with every moment. "Am I doing the right thing?? Did I just fuck that up? It's my fault. My tumor markers have gone to hell. It's my fault. I'm stupid. I screwed up again. I can't afford what I need. I feel trapped. I have no life. It's all my fault." It's a rock hop up 7 Falls. Run, run run! Rock hop, keep moving, if you slip and your shoe goes into the creek you keep running anyway.
I see my life in pieces. Not that it is in pieces but that when I see the future I only see a couple of months, in little pieces. Most of what's there is missing, the calendar pieces are missing in big gaps. They are maybe treatment bummers, or sleepless weeks that turn into months. I don't know why I'm seeing that, but I can describe the missing sections. I see the future sometimes so it's not that odd.
I knew I would have short hair in my mid-30's. I foresaw that 10 years prior. I didn't have any plans to cut it all off in the future, but I had a stronger-than-strong pre-memory of having very short hair in my mid-30's. I knew I was going to get cancer, too. I felt it coming. I know a lot of other things.
I started writing in grade school, like most little girls with diary's tend to do. Those locks were easily popped open, everyone knew your business. If I had a kid with a diary I would make sure that lock was legit. Sucks to know your dad probably read your diary. Later, later, writing became my way to express the truth without interference from others. My speaking skills are tight. Just ask the V, but when it comes down to it I prefer writing to attain my deepest form of catharsis. It's a beautiful, freeing tool.
I feel fooled and awkward, annoyed, when reading something overly-edited, flowery, or pretty even. I see writing as a tool to be used to tell a story, a raw account of the truth. The truth is not a pastel fucking painting. This isn't a popularity contest where people's ego's get fingered for a "like". I'm trying to slow this down, so fuck it.
If I won't be honest with you, nobody will.
I just love to write, and it's been awhile. It's time to stop putting off my favorite thing to do.
I couldn't wait to learn to read when I started first grade at the age of 5. All I wanted to do was learn to read and write, and copy dinosaurs off the wall next to me in math class homeroom. I would draw them in between lessons. I can't explain how creativity works, how writing works -- Why it works.
All I know is that when I'm done, like I'm getting close to being now, everything is fixed. There. All better.
It seems like I am watching the same scene play out whenever someone is dying, especially when they are famous. So much shock and sadness until the week passes and everything goes back to normal again. Until, the next person is dying and everyone is so upset again. And shocked. Can we just cut out the middle man?
How to share your disease with the public is a choice as myriad as the number of personalities out there, and the social media outlets supporting them. Bowie was private. He chose to deal with his cancer on a very secretive level. Others share their cancer trip with daily selfies, thumbs up, smiles. I find it interesting, as a study upon human nature. Why do some people seek privacy with this disease while others seek celebrity? Is it as basic as it being a coping mechanism, or does the current social media monster encourage the average person to believe they need to be somebody?
I've thought about this a lot over the years. I am always stuck in this feeling that this is mine, this is very personal, yet I am not ashamed of how I feel and what I have to do to live, therefore I should share it because what I am doing is unique.. except that oversharing is the hallmark of this current world we live in. People won't stop sharing. I am sick of people, and I am a people-person. The needy, self-important, shameless curated lives we read about everyday isn't real life. This Selfy Culture celebrates the self-obsessed. It's the norm now.
I am not an allopathic-centric medicine patient, so why not post everyday in hopes to "help others" so they know there isn't just one way to do things? Conventional-only stage IV cancer treatment is the wrong direction, in my opinion. In my opinion, it's a dead end with a lot of suffering in the middle part. People die eventually from over-treatment. It's fucked up. But I am not a poster. I'm not a seer or a superhero, I'm as lost and searching for answers as the next cancer patient. There's just something in me that won't let me follow the herd. The truth is what I seek. What is offered if I go the other way is a sure death sentence, this way-- no tellin'. I've heard all kinds of survival stories, I've met people who have beat stage IV, but will I be one of them?
I deserve credit for what I do. I work my ass off and also can speak for both types of therapies, I've done both. When I step off the holistic ride, I suddenly have all the time in the world. It's not great time, but it's not work. Holistic cancer treatment is a non-stop Think-A-Thon, Plan-A-Thon, Work-A-Thon. You don't have the luxury of just suffering, eeeh that's a joke -- suffering is not a luxury, as a cancer patient, it's a right! Suffering through painful treatment side effects suck but if anyone thinks doing holistic is side-stepping suffering, think again. I still suffer, but I live a much better quality of life physically than if I were to do only drugs. Sometimes though, things still go terribly wrong, and I think I'm dying.
The worst part of the holistic direction is the feeling of personal responsibility. The heavy burden of guilt we live with every moment. "Am I doing the right thing?? Did I just fuck that up? It's my fault. My tumor markers have gone to hell. It's my fault. I'm stupid. I screwed up again. I can't afford what I need. I feel trapped. I have no life. It's all my fault." It's a rock hop up 7 Falls. Run, run run! Rock hop, keep moving, if you slip and your shoe goes into the creek you keep running anyway.
I see my life in pieces. Not that it is in pieces but that when I see the future I only see a couple of months, in little pieces. Most of what's there is missing, the calendar pieces are missing in big gaps. They are maybe treatment bummers, or sleepless weeks that turn into months. I don't know why I'm seeing that, but I can describe the missing sections. I see the future sometimes so it's not that odd.
I knew I would have short hair in my mid-30's. I foresaw that 10 years prior. I didn't have any plans to cut it all off in the future, but I had a stronger-than-strong pre-memory of having very short hair in my mid-30's. I knew I was going to get cancer, too. I felt it coming. I know a lot of other things.
I started writing in grade school, like most little girls with diary's tend to do. Those locks were easily popped open, everyone knew your business. If I had a kid with a diary I would make sure that lock was legit. Sucks to know your dad probably read your diary. Later, later, writing became my way to express the truth without interference from others. My speaking skills are tight. Just ask the V, but when it comes down to it I prefer writing to attain my deepest form of catharsis. It's a beautiful, freeing tool.
I feel fooled and awkward, annoyed, when reading something overly-edited, flowery, or pretty even. I see writing as a tool to be used to tell a story, a raw account of the truth. The truth is not a pastel fucking painting. This isn't a popularity contest where people's ego's get fingered for a "like". I'm trying to slow this down, so fuck it.
If I won't be honest with you, nobody will.
I just love to write, and it's been awhile. It's time to stop putting off my favorite thing to do.
I couldn't wait to learn to read when I started first grade at the age of 5. All I wanted to do was learn to read and write, and copy dinosaurs off the wall next to me in math class homeroom. I would draw them in between lessons. I can't explain how creativity works, how writing works -- Why it works.
All I know is that when I'm done, like I'm getting close to being now, everything is fixed. There. All better.
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