Watching other people die from cancer

I've been making an effort, although incredibly delayed, at getting out thank you cards to all my friends and family for graduation stuff, and a big part of trying to do that is hunting down everyone's address. While I wrote out invites to the parties, I left it to my parental units to send out invites, as I feel like the party was a lot more for them than me. I did my thing w/ my friends, the parties were all about showing me off, and really just getting the family together. But I'm digressing. On the address sheets my dad gave to my mom, he had also marked down the head count as to who was going to be at the party. As I was going through, I started noticing names of cousins and their guest count weren't at the party, and I knew what was coming on the last page:

Mary Sharky+ Charlie+ 2 guest 4

It was one of those moments that catches you right in the throat. Where you quickly look for someone on g-talk that you purge on, but realize no one would probably understand why you were upset.

Two days before graduation, my Aunt Mary passed away from cancer. I don't know the type, the family isn't that close to keep me up to date and informed. Nor did anyone tell me she was sick again, and they even waited to tell me that she even died. Like they waited over a week, and then my dad told me casually during dinner at a restaurant. And he only told me because he though I should know not to expect her and the cousins at the graduation party. Yeah, my family is sort of weird like that, and not in a good way.

Aunt Mary hasn't been the only cancer death in recent years. Back in 2003, before I was even diagnosed, my Godfather/Uncle Butch passed. They first found his cancer in his neck; that didn't help me much when they were telling me that I too had cancer in my neck. But upon dragging details out of my mom, it looks like he had kidney cancer, and it was most likely due to agent orange exposure in Vietnam. He was sick for a few years, and during that time we had managed to close a gap that grows when you don't ever see your family. He was always there for me when I was little; staying with me and my mom as my dad went out on six month cruises. He was also that glue that tends to hold a family together.

Just before he got sick, he ran into his high school sweet heart; they fell in love... again.

And then suddenly he was sick. The strongest of the family needed constant care and assistance. The chemo whithered him down, and I remember them having to drain excess fluid in his stomach. So then Thanksgiving comes along, his favorite holiday, and I made my trek out to Philadelphia a day earlier than my mom. And I had to sit in a kitchen and listen to my grandmother and I forget who else, I'm pretty sure it was his girlfriend, bitch and complain about how much they hated taking care of him. How he was just a big baby, and unappreciative, and wouldn't do everything that needed to be done. I vaguely even remember the "I wish he would just die" phrase being said. And all I could do was really just sit there... I lack the ability to stand up to my family and how they tend to treat/talk about people. I'm pretty sure that day has left a few lasting impressions on me. I never told my mom about the expereince.

The day before Christmas Eve, we got a phone call that he wasn't doing well. My mom told me that the next day I needed to go up to Philly to help take care of things. Mind you, at this point I was in Virginia Beach, about 6 hours away, and the entire rest of the family is in Philly. Being an incredibly stupid little 20 year old, and not want to have to endure a repeat of Thanksgiving, I wasn't happy about that idea. I remember driving off to my boyfriend's house, raging mad that no one else in the family was doing anything, and because, well I just didn't want to go. He died the next day. I don't think I ever quite forgave myself for being so self-centered that night.

After having a cancer of my own, I can look back at that experience and can see exactly what I could have done to be more helpful, and be more supportive, and hell even be more defensive. And at the same time I look at my Aunt Mary, and realize, I barely reached out to her at all over the past few years.

Just before I got sick I forced my dad to go to Thanksgiving with his family with me. It was the first time in about 10+ years that I'd seen anyone on his side of the family. I think it was that summer, only months after I had surgery that I saw the whole family at a party, and I learned that Aunt Mary was sick.

I don't know. It just sort of weighs on you. On here, we all turn to each other for support. We look for other people who know what we are going through, etc. But I can't help but feel when you are up close and personal with someone else that is sick, that you get the sinking feelings of guilt and mortality. I can't help but wonder if my presence, and my constant illness has the same effect. I also wonder how much seeing how unwell my family reacts to taking care of each other has influenced how I handle things. The last thing I ever want is to burden anyone, but do I push that to extremes, and lose my support as well?

Sigh... I don't think this is where I meant this post to go.

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.

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.

How much have you wanted to make things about you?

First, let me apologize to people w/ questions, that i haven't gotten back to immediately. I just, this morning, finished my last ever law school exam. My brain is totally fried. And really, emotionally, I am completely spent.

I needed a hug tonight, but couldn't ask for it. It wasn't for being done w/ law school... though, in a lot of ways i've been in shock about that. The hug need ties back with Wednesday. I finally got to my doctor. It was just a check-up, and tune-up, before i move. But it also meant me saying... "there's something behind my ear... its pressing on a pressure point"... which in reality is driving me damn near insane... I mean, it is in between where the jaw connects just under the ear... that fucking hurts if you stick a marble sized lump there.

My doctor's reaction, after feeling my neck once, and not noticing it, was, "wow, yeah, there is a lymph node there."... Before I say anything... I want to say that I love my newest doctor. He is straight forward with me, and tells me directly what he thinks is going on. From a smart person standpoint this is awesome. From someone who just wants to be told everything is ok... I kinda want to throw large solid objects at him.

So being told that yes my cancer markers are positive, and something small but not big showed up on both the ultrasound and MRI, and that i need to wait... well the desire to throw something at him really comes through.

But then there is the new lump. And he acknowledged its presence. He expressed how he didn't think it was thyroid cancer b/c of its location. Right side, under ear. My cancer has always been on the left. No TC ever goes under the ear. I'm not sure to be happy about this, or cursing it. It could be something different... not just thyroid cancer... something new. It is in fact terrifying.

I had a nightmare the other night about getting chemo. I felt the needle in my arm near my right elbow. And i felt the pain and numbness as the chemicals seeped into my system. Imagination is a dangerous thing.

There are people out there, who may never read this, that I need to thank. Michael for listening to my crazy rants about dreams and whats happened. Heather, for always being there if I really need her. And Eric... I feel like I have to type this, b/c you might not ever know it in person. You were the first and only to know that things went bad recently. You didn't feel a need to hug me... and just told me it sucked... and that, that is what i needed. I needed tonight... out w/ people I know, but not really. It's easier to pretend everything is close to normal, and this year is really just an end to law school, and not everything else. I will probably never tell you all that happened this year, and how much being friends with you has been a way to vent, and to passive aggressively take out my feelings on the world. Thank you... you may not realize you've done anything at all, and I can't quite seem to pinpoint in words how it is you were there, but you were... thanks.

Friends

A lot of things have been going around lately about the importance of friends and social circles for getting over cancer. I'm sort of piggybacking off of these things, mainly because they are timely.

Since 2005, I've gone into each spring on my low iodine diet, hypo, and then radiated. I'm pretty open with the fact that I have cancer... but at the same time, I don't like the attention... or having my friends feel bad or worries, or put in the position of saying the wrong thing... etc. But, I still need my support, but without the burden of worrying. This might fly against what others think should be done, and the first and even the second, i didn't mind so much. But when it became an every year issues, it just seems ridiculous to put people through the same stuff again and again.

So what I do each year is throw a party. The Radioactive Robin Wine Party. You know, b/c being on the iodine diet you can still drink wine. And so its become tradition. This year's party was last night. It was called the 4th annual NON-Radioactive Robin Wine Party: the Nuclear Fallout. I'm wordy, what can i say. This year was particularly important to me. I graduated w/ my masters yesterday (law is in another couple of weeks 8D). And this year, as the title implies I'm not radioactive, and I'm actually moving. It was also important to me to have all my friends. Only a handful, like 4, know that things didn't go well this year, and that I tested positive for the cancer, and that I'm just supposed to be sitting and waiting it out.

So for me, having everyone around means a lot more to me than I might let them know. I prefer having my friends celebrate things with me, and just hang out. It makes me feel normal...