Reaching Out to Strangers

*that's my "I have a big ego" picture, and yes my bedroom is the same color as my blog


I would be the first to acknowledge that things in my world run along on their own synchronistic paths, that to any outside observer would probably look like either complete chaos or eerily consistent coincidences. Actually, I take that back... from my point of view that's what it looks like, so I can't imagine how outsiders would take it at all.

I am a gemini, and true to to that, I tend to have multi personalities, and juggle multiple things at once. Doing this blog seems to be no exception to this rule.

So last week, while I was freaking out about job interviews and things, I also had sort of an emotional freak out about the whole permanent cancer thing. But for whatever reason, just writing a blog post and sendin it out in the anonymous blogosphere of existance wasn't going to cut it. So instead, I wrote to the only other person I know of that has thyca on a permanent basis; Kairol Rosenthal from Everything Changes. And she has been awesome enough to respond to me in a blog post on her blog, and we've sort of been having a chat back and forth over there on the things I've been frustrated with lately... You can read about it here: Everything Changes . I figured if you follow along with things like my little rants, you might be interested.

What I like most is this is exactly why I started blogging and searching the internet community and digging up total strangers to talk to. Because when I had that complete freak out, I knew there was at least one other person in the world I could turn to that would actual get it. My EXACT problem. Not a different cancer, not a different chronic disease. And that, well, wow did that help. On my ego side, its kind of neat to see that I had real questions that other people had too, and in general are going through similar situations, even if not exact. I can only hope that I can give the same kind of support when someone needs it.

How this ties in w/ bizarre synchronicity is, not only did Kairol talk about my letter to her on her blog, but Matthew Zachary (i[2]y, stupid cancer blog and radio show) came across my last blog post, and has stuck links to it all over facebook and the stupid cancer blog. I'm pretty sure my blog hits have jumped exponentially. I'm also pretty embarrassingly proud to get attention for something that seemed easy enough to do.

So yeah, in a weird synchronistic day, my name has been plastered all over what I generally consider the main young adult cancer blogs in one day, for two unrelated topics. My ego is HUGE right now, and my studying minimal.

And since I'm talking about blogging, I'd like to direct your attention to some little tweaks I've made (I have no idea why I like to update on format changes to the blog... again, I think it goes w/ the ego and conquring technology in some small way). I've split general cancer blogs and cancer websites. I've also relisted all the blogs to show the name of the last entry and when they were last updated; this might just be more for me so i can see what blogs have updated recently all in one shot so i can read them, rather than scrolling through my bookmarks. I've also stuck a followers box. I've been avoiding this; part of me is content w/ just having a counter, but... how cool is it to say i have "followers" (again, I'm having an ego day). And I'm curious about who likes to read me... No pressure to follow, its just there for my amusement, and if you see other people you want to connect with. The last new feature I put up is a cool little map that puts dots to show where people are logging in from. While being dominated by US and Canadian visitors, there seems to be some UK regulars, along w/ hits from Germany, Hungary, Italy, Iceland, Bermuda and the Phillippeans. Now that's what I call networking. Oh, and I broke 1,000 hits last night. 8-)

Giving Young Adult Cancer the Bird

In case you haven't picked it up already, I'm not really a big fan of cancer, and don't really have any problem with being angry at it, or being disgruntled, or being a smart ass when it comes to dealing with it. Its like all the rebelling I didn't do as a teenager was really just waiting for the opportunity to rage against the cancer machine, or something like that. (Okay, if you met me, you'd probably find me to be one of the most passive and mellow people ever, unless I'm writing... I'm even really quiet and sort of shy). But all that is besides the point; i[2]y has just came out with a new a new campaign that's all about giving young adult cancer the bird.

Basically, they are selling traditional advocacy wristbands at Spencers, and on facebook they are trying to get 10,000,000 million strong to give young adult cancer the bird. They are also collecting pictures of people giving cancer the bird.

This kind of leads into a look into two seized upon methods of advocacy that are pretty popular: facebook pages and wrist bands.

Now, a lot of people are like oh whats the point. I mean, yeah the bracelets do make some money; but really whats the purpose of the group, not like they are out doing a cancer walk or anything like that, right? But it is like that. Even if people just sign up to have their name on something. Even if you don't go out and buy a bracelet. I like it b/c well... I'm angry about having cancer. I'm not a super rebel, but its kind of fun, kind of relieving to be able to just publically announce how you feel. I also think that its something that's just extreme enough in title, that people will click and read what the group is about.

70,000 15-39 year olds. 30 years w/out a change in cancer rate. Yeah, we have damn good reason to be pissed off.

So do names on a list, just general members of a group make a difference? I think it depends. It makes a difference to me when I see the group, I bet I can find 1,000,000 people who hate cancer, and it has 1,160,649 members... I mean how cool is that... And it prompts conversation and networking. Whatever the effect, I don't think its hurting things.

As for bracelets... I'll be the first to say that I think wrist bands are getting a little out of hand... but I will also say, that as someone with specific interests in certain limited causes, I love having a bracelet, and having people ask me about it, and doing a little more educating. So it's a double edged sword there. I also find that few things are more attractive than when you see a guy sporting his little yellow livestrong bracelet. I don't know. I find it hot. It makes me want to actually talk to that person.


I kind of like this. I think each week I'll try to write about some sort of cancer advocacy or awareness thing that is going on. Let me know if you have any suggestions of things going on. And pass this on!!

On a random side note, I'm doing a lot better today, was even able to actually drive. I like seeing straight and getting my brain to function.

Car accident and set-backs

While trying to get some control over my life, I go through daily ups and downs. One minute i'm super optimistic...the next I'm debbie downer. But it generally seems at the end of the day, or at least by the end of the week I'm making it a little bit further ahead. I referred to this in a comment I made on another blog as taking giant babysteps. But right now, I feel like I am on the cusp of plummeting straight down to where I was the lowest.

ON Friday night, right after I made my last post on here, I was driving home from the library when I got into a car accident. Nothing too serisous. I had slammed my breaks in time to miss a guy who decided to bisect 4 lanes of oncomming traffic, only to be hit from behind by an SUV. (I drive a honda civic... it's like a tank). for the first two minutes i was ok... then i started shaking and then i started crying. It was just so frustrating to know in the back of my mind that even though I knew I had done everything right, I lost control over yet another situation. And then I couldn't function. LIke my brain was going full force, I could see what the cops needed to do, I understood what was goin on, I managed to call my parents, as I was less than a mile from home. My lawyer side kicked in and I could map out in my mind who needed tickets, and what they could do for indemnity. But my mouth didn't move. I just let the officers do their thing, and I only said a handful of things. I fetl very childlike.

I didn't go to the hospital until the next day. By then I was dizzy, disoriented, pain in the neck. And then suddenly I couldn't spell my mom's last name. And thats about when I became scared. They said I had a cervical sprain and probably a mild concussion.

I have never had a situation where I felt more helpless. With cancer, my parents are sort of useless. I remember after the first surgery, I was the only person able to pay attention to the doctor, remember all the instructions, think clearly and know what I needed to do. I tried to do that with the accident. Just a stupid fender bender. And failed. I couldn't process things people were saying to me. I couldn't find words I was looking for on a page. Trying to tell my insurance company what was happening nearly sent me into tears b/c I couldn't get things from my brain to my mouth.

I broke my diet. And the first thing my step-dad did was yell at me, told me I was falling into my mother's trap. And I just wanted to yell... FUCKING CONCUSSION GIVE ME A LITTLE FUCKING SLACK. I was trying to replace food w/ exercise as my comfort tool... that doesn't happen when your off balanced, and your neck isn'texactly moving. I don't understand why people in my family never take me seriously when I say something is wrong. it took a doctor saying i had a concussion for them to get that maybe they should have givine me a hand the night before w/ basic things, like carrying my laptop out of the car.

I think this is the biggest reason I've turned to support from strangers. They get wrong what bothers me the most. When I need help, and what I need help with. Today, its not the physical pain thats the worse, its the emotional stuff. its wondering how long till I'm able to actually understand what I'm reading again. When I'll stop feeling dizzy. When I can get back into my fitness routine. When I can stop worrying that I might have more than a mild concussion. When I'm upright, I'm still getting dizzy. I don't do well w/ pain meds, so I spent yesterday trying to figure out if I was queasy from vicadin or nauceous from head injury so I need to go get an MRI.

And then theres the big question, how much of this is worth it? I'm most frustrated b/c I was trying so hard to get on track. Make myself better. If I hadn't been trying so hard, this wouldn't suck as bad as it does. It wouldn't be something screwing up my life and plans... it would just be another hickup to deal with. Normally it's the cancer that takes that role, has the ability to fuck up all my grand schemes.

So yeah, I'm feeling this as a set-back. Yet another debilitating incident in my life that I have no control over. And I feel helpless, and hopeless, over something that wasn't stupidly huge, but enough for lasting impact... again.

Mine

This is a rant... you can read if you want, but its mainly stuff i just needed to get off my chest, and is only the tip of an ice burg on a collision course.

I've recently moved home, and have been dealing with a whole whirlwind of issues that come along with being home, generally revolving around my mother. I love my mom, but she's a little much to handle, and there are things she just doesn't get.

For my birthday, my step dad is getting me a personal trainer. I think this is fantastic and couldn't come at a better time when i need the esteem boost and a fairly set rigorous schedule. He's been working with one since January, entered a weight loss competition, and dropped 61 lbs. So, I'm jumping on board. He gave me a bit to read about the science behind weight loss, etc... but the very first page talks about ways to stimulate t3 and t4 production, and how important thyroid hormone is to weight loss. This is possibly the worst thing to start off with when you are missing a thyroid and you take a set pill of t3 and t4, and no one has been able to explain how you raise your metabolism w/ out thyroid hormone... I'm a humanities major, not a biology major... I've tried asking my endo, but the just tell me about general exercise and cutting portions... sorry, i'm getting a bit side tracked... But I brought this fact up at dinner, mainly b/c a lot of my step dad's routine is based around boosting thyroid hormone production. He tells me that he talked with the trainer he's hooking me up with and she's worked w/ thyroid cancer patients before and they'd design a program for me. Mom on the other hand, responded by saying I couldn't blame all my weight gain on thyroid cancer because she knew someone else without a thyroid, who just learned how to eat right, and then became a nutritionist and she maintains her weight.

She has a lot to say about what I shouldn't be blaming on being sick. I've considered printing all the material on thyroid cancer, treatment, and side effects, particularly from chat rooms, blogs, and forums to have her sit and read, and let it soak in that in reality, i don't publicize (ok i publicize, obviously, hence the blog)I don't publicize with my everyday people every thing, some big, some small, that has really gone on, and what I tend to work with on my own.

Whats sparked me on this post is seemingly pretty petty, and not entirely cancer related, but it has to do with how she treats things that are mine. She has this giant stain glass work table thing, which she decided, to put under my bed... on top of my undergrad diploma... and the $300+ diploma frame that I won in a raffle, during my very first week of hypo hell. The whole thing is totally scratched and damaged now (if you know how to fix scratches in polished wood, let me know). Its probably one of the nicest things I will ever own. And she was all, "there was nothing under your bed... "etc. She didn't apologize, or say, well lets see if it can be fixed, or anything. And when I was moving, I went to pick up the U-haul, i had all the awards, pictures, and other odds and ends that i had had on my fridge in a pile, to be put in side a book, or something to keep them flat... she just took a trash bag, and threw everything in it... wine racks, rugs, shot glasses... and i'm like... wow, glad to see you even give the slightest about my things. And that's how all my stuff has been treated the past few years.

Oh, and she doesn't approve of what I do and don't keep. Now I've always been a pack rat to a certain extent. I actually think i've gotten better over the years, but there are still things I keep. Especially now... when I feel like I forget far more than I remember... I feel like having something there as a reminder helps keep memories in tact. Does anyone else out there find that after being sick, you place ridiculous sentimental value on the most random things?

I've been playing the grin and bare it game. Nothing new for me... I've never fought back or stood up for myself. Ironic for someone who's about to be a lawyer. If I tell her my opinions, or stand up for myself, she cries. She's bossy and needy, and tends to only see how things affect her. If I'm sick, its all about how she reacts and how she gets sick worrying about me being sick (this is everything from the sniffles to cancer). It really becomes about how stressful things are on her. I think i've mentioned before, that i've always been the hand holder of the family. How I tend to shy away from getting the attention from being sick. I generally don't like the hugging, and the "i'm sorries"... I think i've also mentioned that i've lost a lot my compassion for other people's problems. So to be home, and having mom push and exaggerate every ailment (she's only 47), ache, and problem in her life, to wander around the house for a day talking about how she's "mentally depressed"... for one day... Especially when a lot of the things wrong w/ her, she does to herself, or she can make better using basic common sense... I've solved her problems like 50 times recently, and both my dad and step-dad have turned to me, and said "you know you are just talking to a wall, you can't talk common-sense to her." And so it boils down to me telling her to suck it up; i can't respect someone and handle being bullied/and/or treated like a teenager by someone so utterly childish.

Again, sorry for the rant... i just needed to clear my head... mainly so i can continue keeping my cool.

Obsession

After four years of cancer, this is my first year where I'm going into finals week without prepping at the same time for radiation. In a lot of ways, this is the "healthiest" that I have been in four years. But yet for some strange and unknown reason, I've recently become obsessed with all things cancer related. I'm reading a lot of other people's blogs; actually this is a new thing in general, I just randomly started reading blogs regularly about a month ago. I also read websites, peruse merchandise, etc. There's a part of me that wants to throw a stupid cancer happy hour, so that I can actually meet other cancer kids in the area; ironic because I'm leaving in two months.

I think there is a part of me that is so overwhelmingly tired of dealing with everything on my own, that I need to feel connected. And now, with a diagnosis of, positive markers, small new something, but too small to biops, lets just wait six months and see what happens, I feel like I need to be doing something more proactive. This concept alone could spin into a whole new post: the feeling the need to fight and take control of something. But I think I will save that for another time.

So for now, I'm left obsessing. I'm hoping with more free time on my hands to post more. Though I'm not sure what. This also becomes harder, with realizing how many people read, or when another, more famous blogger comments about how you write about the same topics and have the same view on things.
I also don't give this site out to my friends and family. It's sort of ironic in a sense. A place originally intended for me to vent my feelings so I don't bottle them, that no one was supposed to read, and that then turned into sort of a networking device to connect me with others... just not the people I already know and love.

So I guess my questions for the handful of readers out there are these: Do you find there is something that triggers you to obsess with cancer, not so much the disease, but the culture that develops around it? And, do you find it easier to not share all your feeling with your closest people for whatever reason?