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...

PHD Cancer Comic

What do you remember?

It is a little known fact that I don't remember the summer after my first year of law school. This isn't much of an exaggeration. The year after my thyroidectomy, I had a neck dissection, and I can't tell you what I did.

The first time I experienced issues with my memory and thought process in general was a week after my thyroid came out. Being me, I only took a week off from school... I mean, I was graduating in a couple months, I wasn't about to put my life on hold. And being fairly confident about being fairly smart, I went and wrote a paper, even after my prof. told me I could wait. I couldn't make things make sense. I met with my prof. we both looked at it, and I bluntly said that I couldn't understand what it was supposed to be about. This was terrifying, and demoralizing.

And then, a few months later, I went to law school. There's a part of me that just attributed how much trouble I've had in law school to the fact that, well, its law school. But some things have been seriously noticeable. I can't read as fast. I can't remember everything I read. I have a hard time connecting some ideas without writing them out first, and even then my ideas have never been the same as they were. Its hard to explain. And then after a year, someone is giving a lecture and they told my support group about how losing your thyroid, or being hypothyroid affects memory... and suddenly, it isn't just you.

I've been reading stuff on Cancer Planet (see link on the side bar)... and it sounds like memory and intelligence issues is nothing new to cancer patients. I feel like things have gotten a lot better, but aren't where they were. Does anyone out there, who have gotten over treatment stages feel like things have gotten better for you? It would be something good to know.

Nothing to do with Cancer

This post has absolutely nothing to do with cancer, its a part of something else I have been working on, and I feel a need to share it everywhere!

This year I have been participating in a Street Law and Human Rights Education project. It was run as an independent study course. Basically, we go out and teach kids about their human rights. I, along with two of my classmates, was working in Braddock, with the Braddock Youth Project. You may have heard blips about Braddock recently, as the Mayor, John Fetterman, has made appearances on the Colbert Report and Fox News, and made statements in the New York Times. If you don't know anything about the town, I would say give the wiki article a read through before watching the documentary:

So, we worked with kids 14-18. And as a final project, we interviewed a few of the kids, and had them write and act out skits about things that they thought were important or relevant to their own lives. They were the writers, actors, and producers. We didn't even get to video tape. We did the editing, but that was just putting things in order; we didn't edit for content or because we didn't like an idea or thought it might be a little bit too controversial. I'm quite proud of the whole project, and hope that it gives you some insight into things. Oh and the opening scene, that's the Mayor of Braddock...

Where everybody knows your name...

I'm moving away from Pittsburgh in about 35 days. This means a lot of saying goodbye to a lot of things. I've been living up here for 8 years... that means the entire time that I've been sick, I've lived here. All my doctors are here. I actually know how to navigate the hospitals. And everyone knows me.

There is a large part of me that is going to miss this. I've already talked about how losing my last doctor and nurse was pretty upsetting. But now I'll be losing my receptionists that just wave me through without an escort to the test labs. My pharmacist who knows my entire medical history, and gives me heads up on cheaper better versions of my allergy meds, and has no problems putting in special orders for my levels of levoxyl. Even my surgeon knows me... actually hugs me. I have an eye doctor that questions me about what its like to own turtles, and a voice doctor who deemed it appropriate to pelt me with stress ball. Part of the reason they all adopted my case was because of how young i was,and the problems that came along w/ my particular experience... I somehow doubt that kind of relationship can be developed again.

But at the same time, it will be good to leave a lot of it behind. For one thing... the pharmacists scare me. There's 3 or 4 of them... and they all know my name... First and last, and how to spell it... just by looking at me. I'm only there like once a month... just its been once a month during the school year for the past 4 years. The one pharmacist hits on me... its amusing... b/c he's like in his mid 30's... and he'd by my type, if not so old... but he kept telling me how much he'd miss me etc... which is awkward.

And maybe it would be nice not to be made a big deal of... There's something to be said about not having everyone know you. It sort of implies that you aren't there all the time. I'd almost rather just being that anonymous face that just pops into the office once in a while... no special circumstances. I guess its just me realizing I'm ready to move on. And I don't think I can until I give up the comforts of staying here.

Faith

My fish died today. It's Easter Sunday... which, as usual, I've spend alone. And the beta fish, whose name is Fish, that I have had since August of 2007. So he's lived a fairly long life, but then just... died. There are a lot of eerie things tied to this, that aren't at all relevant to this blog. But then I've sat here all day, watching Turner Classic Movies and all the Easter stories, and it got me to thinking about faith.

I rarely if ever talk about religion these days, unless it is in jest, or if it is to muse over my aspirations as a young child to become a priest, only to discover that under Catholicism, women can't be priests. When we missed church, I used to actually gather my stuffed animals together and break bread for them.

Now the next bit will irk a lot of you. You shouldn't let it. It isn't an attack... if anything, for those of you who have kept your faith through all you've been through, I envy you. I used to pray, and find comfort with prayer, but that changed one day, very suddenly.

I was in the radiology waiting room. Praying before going in for an ultrasound. When I looked over at a girl in her late teens. Clearly with severe down-syndrom. With what appeared to be grandparents. But she also was clearly undergoing chemo. And I never felt anything so sinking as the feeling i felt when i looked at her and her family... it was a mixture of anger, and frustration, and irritation with how i could ask God to help me and look after me for a test when there was someone else sitting not 20 feet from me that clearly needed more attention... or something like that. And then I pulled myself away from her and tried to comfort myself again in prayer, but it didn't work, there was no comfort. That was the first time i had an ultra sound where they didn't biops my neck for a change.

And so now I find, if i pray, it's usually for someone other than myself. It is awkward for me when I get a card in the mail from my Grandfather saying they have people praying for me at this or that church. Sort of like I feel like those prayers should be saved for someone with more faith than me. One day my dentist asked me how being sick had affected my relationship with God and tried to give me a book and things... that was a little awkward. I don't need to be preached to. I have my beliefs still. But as you read through my blog, you won't find me talking about faith, or how God has gotten me through things, it just isn't my way.

Something I wrote back in 2007 that I randomly found on my hardrive

So I found the below ranting on my hard drive... amazing how the same feelings keep popping up again and again over the years.



Sometimes things just suck more than anyone can possibly begin to imagine. I ask you if you know what it is like to have every inch of your body and soul ache as if at any moment it will just give out from the wear and tear. When emotions and experience hurt physically. Not so much depression as a realization that too many things are wrong to be righted. That there is so much you can’t change you no longer have control over your life. And the more you try to control the larger the hole you fall into. When so many things have gone astray that your goals seemed blurred. Where you long for the opportunity to be torn between an ambitious career and life with a happy family because now both options have been torn from you in the most callous of manners. How you wish for a second in time there would be someone that could honestly tell you that it would be ok. Someone to sincerely hold you, someone who actually cares beyond just a friend. It’s the point you get to when you wonder if life would be better if you had just lived it the way you wanted to… pursued your dreams… pushing it to its fullest extent and then dying young, or if fighting for life, subjecting yourself to millions of tests, days of worry, never being able to truly be free to do what you want again, yet living a “full” life into old age…. But really, what kind of quality of life is that??? I don’t know what the point of what I’m trying to do means anymore, especially if I can’t pursue that life. I’ve lost my best friend b/c I dared to go to a level more than friendship… now he won’t talk to me. He was the only thing that really kept giving me hope for something more. And now I’m more alone than I have ever been. I have no dreams that can be achieved. I have no hopes. I have no motivation. I’m just waiting around… waiting for the next blood test to come back, the next scan to be performed, the next phone call confirming the next appointment, the next interview that will never come and a real world that can only shun someone such as myself. And I don’t know how to make any of it better besides more waiting and watching as the world passes me by.

Who makes your decisions?

For as much growing up as you are forced to do with cancer, have you ever found that you lose your independence? Your privacy? Your ability to make your own decisions?

This has become overwhelmingly apparent to me as I'm currently trying to choose my current life course. I'm graduating in a little over a month. I'm taking the Bar exam in Virginia, which means moving home to study and until I can find a job, hopefully in D.C. (home is Virginia Beach). This, like all decisions in my life, is the smartest most practical decision. I can't help but feel that making, "practical" decisions has consumed most of my life... but that is beside the point.

So this is going to sound completely irrational, that's probably why I'm avoiding saying it, ok, here it goes. I don't want to leave my stuff. Its mine. I didn't ask my parents to rent a truck. I never said I wouldn't do it. It was decided for me that we couldn't afford to rent a truck and that I should give away my bed and couch. I don't believe that we have enough space in all of our vehicles to get everything home. And I'm guestimating that I would end up losing about $600 worth of stuff (devalued). But its mine. Stuff that I have bought over the past few years to pull my life together. Bookcase, dresser etc. Now A desk and a set of drawers that really just need to be tossed. I have a lot of other larger things, small enough to fit in a vehicle, but would still be too much for all the cars. No one has asked me about if i was willing to rent the truck, or what I was really willing to give up. I don't think they understand that my stuff, in my place, is all i have that is mine. My own decisions. My life. I don't think they realize how bad it is that I even decided to move home, to revert back to being a kid. I've lived alone for 4 years. 8 years since high school. And when I get my next place, I don't want to have to start over completely.

Cancer came my senior year of college, sort of prolonging how long i needed to be taken care of. It was decided that I couldn't do Americorp, and instead needed to go to law school so I wouldn't loose my insurance. It was decided that since I already had the acceptance to Pitt, where I already lived, and where my doctors were, that I would stay here. It was decided, the day after I had radiation, which apartment I would live in... which was also how my school was chosen... A deposit down and contract does that. It was "smart", it was "practical".

Mom is trying to organize my insurance for me once I graduate and turn 26. Which means she needs to know everything about me. She organizes my bills and everything too. This just means that I don't have any privacy in my health any more. I realize there's hippa, and everything else to protect me. But in a practical world, i don't have any money. My parents do. As long as I'm stuck in job search/graduation/bar studying/cancer testing limbo, I can't seem make my own decisions.

"I think I'm paranoid..." -Garbage

I think this is a side-effect of being told every single year that I have cancer still, usually after being told things are looking good. I’ve made very forced effort not to feel my neck anymore because inevitably, there is something always there to bother me. Actually this is incredibly true as I have a lymph node chain on the left side of my neck, just behind, and running parallel to my scar. There are about 3-5 lymph nodes that I can feel, and sometimes even see, especially when I get sick. But today’s paranoia is stemming from a newer lump, and even more disturbing is that it is on the right side. It lies just under my right ear, in that spot where there’s a gap between where your jaw and neck connect. I noticed it about a month ago, then I got sick, then I got better, and its still there.

Its probably just a swollen gland, maybe a blocked salivary gland, or a response to my allergies. For normal people, these are all reasonable things to conclude, and just let it go. For cancer patients, I think finding a lump has a very distinctive fear, or annoyance tied in. You don’t want to be paranoid. After a while, you become so tired of the tests, that you wonder if it would just be easier to let it go.

But there are other issues; it’s a lump in odd place. Even if I went in, the doctors are only looking for nodes in my thyroid bed, and focus on the left side. Asking them to probe a new area is like asking a little kid to eat a second helping of veggies. Then they argue, “that’s not where thyroid cancer is,” and your like, “what if its not thyroid cancer, there’s a lump there, I swear, you can feel it, its been there a while.”

And going along with that, I wonder how people deal with just random lumps when they don’t have thyroid cancer. Who do you turn to? How do the radiologists know what to look for? Why don’t they use that same level of diligence and searching when they handle all patients, just in case, a new bump is something different? In real world stats, getting one cancer doesn’t mean the likelihood goes down for getting another.

I think that sums it up. I’m paranoid. Have little ability to accept that I’m “fine”. And well… there’s another fucking lump on my neck where there shouldn’t be one.

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?