Bird Nerd, Gull Girl

Today while I was walking on the beach I had gotten almost to Pierpont when I stopped and stood looking at the ocean. I turned to my right to look back up the beach. I had been thinking heavy thoughts, end of life thoughts. I saw a very white gull, a large one, flying towards me, right at me. When it got to around, say, 10 feet away, it stopped and hovered above me, like birds do when they’re hunting. Or, in the case of a gull, eyeing somebody’s shiny chip bag, or paper-wrapped sub. It was odd. The bird looked like it flew right TO ME. It kept hovering there, making me look down to see if I had anything it could have mistaken for food, anything shiny, or interesting. Nope. Nothing. This went on for several seconds and at one point it veered so closely I shrank in surprise. I imagined how those rubbery water-bird feet would feel on my shoulders. I've been bitten by several gulls in the process of capturing injured ones on the beach, usually with nothing but my hands,so that didn't scare me, but I reacted anyway, it was that close. It was definitely there because of me. 

Finally it decided to land about 10 feet away, facing me. I took a step slowly towards it to see what that would do, it turned to it’s right, unsure, and stopped. So I slowly stepped back, it stepped forward to face me. We stood there looking at each other, waiting for someone to do something,then the oddest thing happened. It leaned it’s head down to the ground, dropped a small object onto the damp sand jumped up and was gone in the next second no longer interested in me. I was so taken aback for a couple of seconds I stood there processing what had happened. Did this bird just give me a gift?? I stepped towards it and a shiny light pinged off of it. I walked to where it was and to my surprise, as I bent closer to see it, I discovered it was a shiny, red, glass bead. The kind that’s decorative, maybe to put into a vase. It immediately reminded me of my birthstone, Garnet. I picked it up. Still in disbelief. What a weird thing to have just happened. 

I looked for the bird, it was long gone. I turned back down the beach, walked several paces, then for no reason I turned BACK around, walked about 3 steps and what did I find? Another red glass bead. I had not seen that other one when I was walking just then, I even looked around as it seems to have appeared out of nowhere, dropped out of the sky. 

I have no idea what it means, but a bird gave me a bead today, picked me to give it to. it was the strangest animal encounter I have had in a very long time. Maybe ever.

I'm back *crickets

There are a lot of things people say to you when they find out you are in the fight for your life. One of the them is that you must "be positive!" You must! Everything depends on it, if one is positive one cannot fail! Keep your chin up - I tell my cancer girls, because once you lose hope, you are fuuucked. I leave that last part out, but that's a foregone conclusion, they already know that. Cancer people are kind of given a crash course on silver linings, you have to find them. Anywhere possible. Like, "Oh my favorite spoon is clean!", or, "I didn't throw up after the last meal and I didn't lose another pound today!" 

As far as the advice-givers telling us how happy we need to be while scared out of our fucking minds that cancer is spreading to the brain today, or the liver, or the lungs ( those are my next options ) I wonder how many of those people live their advice while only facing nothing more but having to show up to work the next day? Imminent doom. Those happen to be my favorite words right now, I've used them enough lately. Imminent doom! How many people follow that advice not facing imminent doom, and you are telling ME to be positive. 

Be Positive is the catchphrase for all that befalls .. someone else. 

It's hard to not take it a little hard because, what do you think I've been doing this whole time, not being positive? How am I even still here if I hadn't mastered that yet? 

I've been at this for nearly 10 years, almost 5 of those being stage IV. I'm facing my imminent doom every second, minute, hour, day, week, month, year. Thankfully I can include the word year. C'mon now, don't you think a person facing a painful, dehumanizing death is allowed to complain now and again? 

I think the biggest mistakes healthy people make when talking to someone with cancer is to advise them when they are not asking for advice in the first place. Throw on top of that the advice is coming from someone who has never even had cancer. It's wise to resist the urge to counsel a person on a topic when you are the novice, not the person you are counselling. It can be taken as insensitive and really annoys most cancer patients, but they will never tell you to your face. If you look at it that way, it seems ridiculous anyone would ever try, naah, aaaall daay loong. There's that and naming every person they've ever known who has had cancer, who have died. Those two things got to go. BYE BYE.

Now, we can start to have a convo. 

What is the worst thing that usually happens to you in a day? Late for work, long line at the DMV, need to get laid, laundry piling up? To me, these are not real problems, these are normal life occurrences. They are temporary. You deal with one thing then move on. Maybe you deal with something for a week, or a couple of months and move on. There is no moving on from stage IV cancer, and we still get to do all of those things regular people get to do, except work, I miss work. I miss money. But more, I miss MY work. I know we are all going to die, blah blah blah, but I am otherwise healthy and I am not ready, I am not old, I am not lazy, I kick ass in life, I need to be here, I love life, I love everything about life, except people who sit in the fast lane going 65. 

When your job is, fighting for your life, you don't get a minute off. There is no break ever. I clock in the second I wake up, actually, I don't get a break at night either. My shit goes 24/7 around the clock. It's the mind, it has a way of erasing the horror so one continues to want to live. It makes me consider the pain of natural childbirth, not the epidural-childbirth experience, natural, full pain, from childbirth. The mind has a way of forgetting that intensity, otherwise mothers may want to stop at one. I won't know, cancer spared me the joy of having my own.

I go to bed with towels and changes of clothes. I drench my clothing and sheets every night from alternating hot and cold sweats. All night long I wake up drenched, take my clothes off, towel off, switch sides of the bed, put a new towel down, put new clothes on, repeat, repeat, repeat. By the morning my head is soaked, my neck feels like there's a rope around it from perma sweat and chills. I'm very cold, very wet, from sweating and freezing all night long. It is completely possible to be hot and freezing at the same time. I have a way of comparing everything to the hell of chemo past, and this comes really close to it, so it's got to go. I'm working on it, but these things take time when you're using holistic medicine.  

Being told to be positive by a healthy person can be very hurtful to a cancer patient. It sounds like criticism. Don't do that to us. We have to be positive, and are. You don't see most of what we go through. The thing about me is I don't candy-coat the truth. Society has it twisted, it teaches us that being brave is acting positive. Wrong. That is for you guys, it is an act. Real bravery is in being HONEST. I've taken a lot of shit for being honest, but I'm not going to stop, I'm not doing it for you. Rip off the bandaid already, you aren't the one dying.

Chemo heads smiling in pictures..that's fake, yet we all do it, smile for the camera, hide the pain. Have you ever done chemo? You don't want to smile, you want to just die. It's the worst pain you can ever imagine, and it goes on, and on, and on, and on, and on, and on, and after it ends, it never really ends. The pain, the damage, the debilitating exhaustion lives in you. It's worse than having mono for 10 years. That's the closest thing I can think to describe that one aspect as best I can, and I'm only referring to the exhaustion, not anything else, and there is a ton more. 

This disease leaves no aspect of your life un-fucked. You say things like- the exhaustion is only one small portion of this treatment, that, and not sleeping. For years. In a world where people bitch about slow internet, they can't relate. Forget having a family or working, or having a relationship where you make future plans together, or getting a puppy because you probably won't outlive it. This all sounds so terrible, and then you might wonder how in the HELL can a sane person continue on knowing they are utterly fucked? How? I'm positive, bitch!!!! The odds against me are stacked 99 to 1, and I think I actually have a chance! Dumb and Dumber. See, I'm positive. I just proved that shit. BOOM.  

There are so many horrible things that go with this disease that you have to broaden what's acceptable and minimize what you can, even when nothing's minor, or minimal. If you don't, you will become desperate. Cancer is not a disease to get if you are a weak person. You have to be ready to fight, and fight, and fight, never stopping even at the moment you are told that NOW you are officially fucked, so then you give it your last big-Ass effort anyway, because that is what you do. I could teach a class on how to survive, but instead I'll just keep doing it. 

When I see people saying things about their friend who has passed on, my stomach almost flips. She was so brave *gag, she was so positive *barf, I never heard her once complain *double stick my fist down my throat. Were you there, in her bathroom, as she pulled out handfuls of her own hair? How about when her shredded mouth bled from sores and throbbed from pain, and all in just the first two weeks of what was going to be 16 weeks of pure, filterless HELL. Was she smiling and being positive then? That is the truth nobody sees. Nobody saw me like that except my bf. Nobody. You will hide. When it's you, you will hide too. Nobody will see the truth, you can write about it like I'm doing right now, but nobody will see it. You can't let anyone because that is the only thing you have, your memories of who you were. You grip that shit with an iron fist and hide like a dying cat under the porch. Nobody will see me weak- you tell yourself. 

Cancer (victims - lol. My dad used to say that a lot and I'd correct him) patients "let their hair down" when no one's around, and cry in the shower. Healthy people and their judgments of how we are supposed to act are just more bullshit for us to process. Frankly, we have this huge thing to grapple with, ergo, the truth is more often hidden before it can be shared. Call it "self preservation" but we can't stand to console you. We should be the ones being consoled, but the truth is you can't usually handle it. We are the strong ones, it's backwards--- so please don't tell me to be positive. I have been for years, I deserve a credit, a lot of credit. 

What makes me stand out from 99.99% cancer patients I know is that I tell the truth, brutal as it can be, and I always have. I've alienated plenty of people over the years with my posts regarding Big Pharma, Komen, chemotherapy. Many of my fellow "cancer sisters" turned out to be judgmental and nasty to me. And guess what? Now people are following suit. I took a lot of flack for my words in the 9, almost 10, years. And now what was unpopular is being spewed all over facebook like gospel, as if these people were with me all along. All I ever wanted is to help people, and be helped. But most people are closed, therefore this path has been lonely. Safety in numbers right, as soon as my opinions became more widely accepted more people started mirroring my words. At least the tide is changing somewhat but it sure is hard being a pioneer, it's lonely and you take a lot of negativity being thrown at you. In the end you get no credit so it's a good thing I don't care about that, it being a purely egotistical issue.


I don't need to be anyone's hero. I have great days, and terrible days. I am not a people pleaser. When I was a kid I felt I needed to be. I learned very young that most people present a false face, are driven by fear and ego. I only wish to please my own soul, and those on similar paths. I can serve people better than way anyway, that's how it works. Life is really a solitary journey, so this is more than okay with me.  

I still have cancer, and I'm probably going to die from it. I don't care to be the one people speak about when they say, "She was so positive, and never complained." I know, and everyone, when I say everyone- I mean everyone with cancer knows this is complete bullshit. Nobody does that. If they were to I would feel pity for them as they died a lonely death following a very lonely, false, Disney movie, A Walk to Remember- life. Let's be real. This isn't a movie, it ain't a t-shirt.

I've had a harrowing time this last couple of weeks. honestly, you are lucky, or not, to be reading anything from me at this moment. I was seriously considering bowing out of this play. The hours suck and the pay is shite. But, something drew me back again. Though my body felt it was shutting down it's slowly regaining some semblance of it's former shape, albeit 15 pounds less. 

I feel like I'm walking around without emotional skin. What I did recently  broke something within me. I don't know if this is the beginning, or the end. What a silly thing to say, both are illusions. Wow, it's late, I am not going to edit this thing. Sawree, I hope it doesn't suck, but if it does, I don't give a damn, this was cathartic as hell.