Job Security

I keep wanting to write something about how I've never had a job that I couldn't walk away from before. I mean, the military. I couldn't exactly walk away from that. But that was different. That was planned. And, perhaps more importantly, I couldn't be fired from that. This is not to say that I think that I may be fired (although, writing blogs from work is probably not the best thing in the world. But I do my job, and I do it well, so who cares how I use my spare time?), but the pressure of not being able to be fired, not having the flexibility to be fired if push comes to shove. Well, this vexes me.

The reason I can't leave, of course, is the insurance. But I've always been in a position where if someone pushes me in just the right way, that I can feel comfortable taking the moral high road. That I can say, "look, you just made this about more than professionalism, and if you think that you can stand there and talk to me in the tone or voice or words or face or whathaveyou, that you're using, then you are poorly mistaken." Because no job is worth more to me than my integrity. Never has been.

But now.. well, now everything's sadly different. Now, if someone starts to get a bit lippy and think that they have the right to treat me as less than a person because I have to put up with it. Well, now they are kind of right. I do have to put up with it. I just hope that I'll be able to when that moment should happen to come. This makes me really more nervous than it probably should. But there's a lot on the line.

Time capsule

When I was in high school, everyone I knew who was pregnant fell into one of three categories: Friend of my parents, parents of a friend, or teenagers. All three categories have the common characteristic that they are overwhelmingly unplanned. People in my parents' generation already had their kids, and their kids were already mostly grown. They didn't want to have more. And, teenagers. Well, that one seems pretty obvious, doesn't it? So when I came to the mistaken assumption that the vast majority of pregnancies were the result of accidents, I didn't feel so bad to figure that I, too, must have been an accident.

I wrote an essay essentially to the effect that I was okay with being the result of an accidental pregnancy; that my parents treated me with love and compassion, and that everything pretty much worked out for the best. At some point I shared this with my mother and imagine my surprise when her response was "but you weren't an accident." It turns out that she and my father actually tried really hard to have me.

I gotta say, that felt incredible. To know that I'd been wanted all along.

My child is going to feel that. My child is going to feel that times 1000. Right now we're in the middle of a push to save our fertility (I suppose I should plug that here: Our fundraiser), but even if that turns out to not be an option. Even if we go with adoption, our child is going to happen.

I think it's still kind of unnatural to our generation, even though we were the first of the internet age, to really appreciate that something we put here can be permanent. I can, for instance, right now, address a message to the unborn, unknown child that I'm talking about, and that child may someday be directed here to read it. How strange.

We wanted you really, really badly. I thought you should know. It's hard to imagine your parents as having existed before there was a you. I can't imagine my father ever being this open with me, and I'm pretty sure that I'll have a hard time pulling it off with you when you're actually in front of me. Right now, I don't know the first thing about you, except that we appreciate you, and that a whole lot of people helped us to ensure that you would be here. That's gotta feel pretty good, right? 


To everyone else, sorry for the sap.

Advice

My goal with this whole thing is honestly nothing more than therapy. Writing it all down and pretending that nobody is listening (I know, I haven't been pretending that nobody is listening as of late, but I'm about to again), so that I can get whatever I need to out of my system. I'm not trying to document what this experience is like, what each appointment looks like and complete a whole story of what cancer treatment is like. There are plenty of blogs out there that do that, and I'm grateful. But I don't think I have anything new to contribute here. I'm also not out trying to give future people in my position advice, because so far I've figured out very little. But I did learn an important lesson today, and here it is:

Get the best possible care that you can. 


Even if you think that it's so early that the quality of care is not going to vary very much from clinic to clinic. That's what we thought. I woke up today one hundred miles away (almost exactly) from where we live, running just a few minutes late to our appointment at the University of Michigan. We went there for a second opinion. We did not expect the opinion to be all that different. Mostly we just wanted more information, someone else's perspective on what all of the options in front of us spelled out. When I woke up this morning Sara's tumor was 1.7 centimeters. By the time we left it was over double that.

In addition to the discovery that the tumor was twice the size of what our local cancer treatment facility had told us it was, we were also told that much of the surrounding tissue that we had already been told not to worry about should be worried about. The radiologist was fairly certain that the second biopsy, the one that came back negative, nothing to worry about, was quite possibly just a sample of the wrong site. In fact it likely is something to worry about.

This all seems like it might be bad news, but it's not. We'd rather know all of this now, before she actually undergoes surgery, before we start treatment, before we think we're in the clear when we're only halfway out of the woods. Because honestly, if we never have to go through this again, that would be really, really ideal. Seriously. Never. Again.

And we left the longest day of appointments today not only better informed, but with a much higher confidence that we'll be getting the right treatment, that our odds of having to go through this ever again will be as low as we can get them, and that we're in good hands. What a difference a little bit more experience makes. So the point, the moral here, isn't necessarily that you should always get a second opinion (I don't think we would bother if we had started here), but rather that you should seek the best possible care that you can get. While I'm sure that this is true of other things in addition to cancer, it is especially true of cancer.

Alright, on to other news:

I'm ready for bed. Goodnight.

Waiting rooms

So this weekend was amazing. Sara and I have both been wallowing in the comfort of knowing just how many people have our backs (it's awesome). But now it's back to the grind of it all. I've been sitting alone in the waiting room at the University of Michigan breast cancer clinic for the past two hours. Two hours. I can only imagine where they've got Sara waiting, but I'm sure it's equally as fun.

At least I have my iPad. You have every right to hate that guy who sits around in public on his (or her) electronic devices looking like a pretentious tool. I hate that person, too. But today it happens to be me, and I'm so glad. Because without the Internet my options are Sports Illustrated and Better Homes and Gardens. Yep, I'm rambling.

We're here today for our second opinion. We're supposed to meet with a different surgeon who will tell us what he or she thinks is the smarter of our options and what the game plan might look like. And we're supposed to meet with a new oncologist, who will hopefully not assume that they know what every question we are going to ask is before we ask it. Don't get me wrong, our current oncologist is very nice and seems to know her stuff. But this one character trait is enough to drive someone crazy when the questions are so important. And then we'll meet with who knows whomever else.

But right now we are in breast imaging. I know that our current team already sent everything over but apparently they wanted to do it all again. I'm okay with that, but I wish I could go back there with her. At least for this part where I know she is probably just sitting in some sort of small room back there alone waiting herself for 95% of the time. And she doesn't even have an iPad to keep her company.

It's kind of comforting how unprofessional medical professionals can be (in a good way). I'm used to the people in medicine being kind of distant, but the more interactions that I have, the more everyone starts to seem like a person. I had a light hearted talk with one of the interns at the fertility clinic about the porn selection (it's not bad, he tells me), and now I know about the payroll technician's (the one here) career ambitions and the other guy (I don't know his name) is leaving soon to take a motorcycle safety course.

I suppose I like when these people start to look like humans because I hope it means that we look like humans to them. Although I want the people treating my wife to not be guided by emotion in any decision, I also don't want to feel like a product wherein our only function is to eventually lead to a paycheck. I think this is one of many problems with our healthcare system, every person and every illness is a dollar value. I like being humanized.

In the future I should refrain from writing blog entries from waiting rooms on my fake keyboard. It keeps attempting to make often hilarious typos (sorry if any got through), and it's too slow for me to make really coherent thoughts. Now I know.

Edit: typos (breast imagining?).

Gratitude

I can't even begin to express the amount of gratitude I'm feeling today (Sara, too). We are so lucky to have the friends that we do. The amount of support that we have right now, the sheer size of the group adopting our cause,.. it's humbling. It's amazing. It quite literally brings tears to my eyes to know how many people have our back. 

I can't believe that I once left this town feeling dejected and alone. You have made yourselves very clear. We are not alone. Thank you. 

I know that the dust settling on this one is a long way off, but I'm already trying to imagine what I can do to pay it forward. I honestly believe that you can take the worst experiences in life and turn them into a net gain. All you have to do is try. I'd really like to do that here. 

(I don't have a concluding paragraph. Also, I'm at work, and people are coming).

Community

Just launched the fund drive. Really nervous about it. Not in the sense that I'm nervous about how much it will or will not generate (because I have to believe that one way or another, we will find a way to make this whole thing work). Just nervous about the idea of appealing to our friends for help. What is it about our culture that makes it so hard to ask for help? Everybody needs it sometimes, right?

Yet I can't help but fight this feeling like I did something wrong. Like you're not supposed to need help, you're supposed to figure everything out alone and make it work alone. I'm actually really glad that I can see through that, that I have the type of friends who expect me to see through that, because they actually mean it when they say that they're here for us. That's pretty awesome.

tangential

So I'm abandoning the format of a themed blog. I mean, this is still going to document the whole of this experience, right? I just find it really difficult to come here and write when I know it's supposed to be about this one thing, especially when it's one thing that I generally have to force myself to think about even more in order to write a blog about it when the fact is that I would prefer to think about it somehow less.

I'm in the process of designing a bookshelf or bookshelves to replace the one in my living room. I'm trying to create a design that tells a story through math; wherein every ratio has a significance. Our anniversary here, a couple of birthdays there--that sort of thing. Getting them in there isn't that hard. It's the getting them in there while still maintaining a product that is aesthetically pleasing that gets kind of tricky. I know of the prevalence of the golden ratio ( x² = x + 1 ) in various construction and design projects, but this really makes me wonder how much more is written out there in a code that nobody's ever bothered to decipher. Did some clever engineer hide the name of an old lover in the shape of my headlights? Could be.

Regularity

It's interesting how stress works. And how it vents. It's been about a month and things are starting to taper off. I have a lot on my plate. More even. But it's not impossible. And I think I'm past the pity party. These past few days have been characterized by being productive and spending time with friends. I will add exercise into that mix and perhaps a dash of creativity and in the end I will be better off than when I started. That is always the goal, after all, isn't it?

I really like math. Did you know that?

Insurance

Sara told me that if we didn’t have insurance she would not have gotten her lump checked out. At least not when she did. This is all too common. I have seen it cited numerous times (almost always pointing back to the American Cancer Society) that people without insurance are three times more likely to be diagnosed with cancer in a late stage. This, quite understandably, is due to early screening.

The chances of surviving five years with Stage I breast cancer and insurance is approximately 97%. Conversely, receiving a Stage IV diagnosis with no insurance reduces those chances to less than 12% (http://bit.ly/MOYID8).

I sometimes hear opponents of universal healthcare say something tantamount to “it’s their own fault. They are choosing not to spend the money and therefore gambling with their health.” The implication that this statement makes, the unspoken necessity for it to be a valid argument, is that the people who have insurance are somehow of such different character that they would not make the same decisions as the uninsured, were it that they themselves were uninsured. This is quite obviously preposterous. Quit blaming the victims.

Sara’s insurance comes through my job. In August of last year we were married. I was supposed to start law school in September. I didn’t. I considered starting in January, instead, but decided that this would make it too hard to transfer to another school after I had completed the first year. Rather, I changed jobs. It was actually my intention to quit in a month from now, to enjoy the end of the summer before starting law school this fall. The point that I’m making is that the fact that we have insurance, the fact that the cancer was caught in this tiny little window of the best possible way this could have happened, it’s luck. It’s extreme luck.

I’m sick of people pretending that people who are insured are somehow more entitled to quality care than people who aren’t. That they somehow have made better life decisions, or are harder workers. Sara works ten times as hard as I do, she always has. Yet here we are, with my insurance. So be it.

I can’t tell you how lucky I feel. I can’t tell you how glad I am that my life is not still plugging along at its normal hunky dory pace, completely ignorant to the fact that there is a poison growing inside of my wife which will, given around another year, emerge with a veracity that will almost certainly end in disaster, in a tragedy of such magnitude as it breaks my heart to even imagine. But that almost happened to us. And it does happen. It happens every day to some unsuspecting couple where he loves his just as much as I love mine. And they are no more deserving of it than I am. And I am no more entitled to what is essentially this luck than they are. And I’m sick of people pretending that they are. What makes you so fucking special?

Anger

I've never been one to wear my heart on my sleeve. I believe that generally, even when people think that they know what I am feeling, it is only insofar as I want them to know what I am feeling. Overall I would say that people probably think that I am a far easier read than is the case. So it is with full understanding that the following is my own doing, that I am fully responsible for my present situation.

I don't know who to turn to for support. There is a general overwhelming showing of people who are more than willing to offer said support, but a fairly lackluster turnout of people who know how.

When I was away it was just a matter of time before I learned to replace my social dependencies with an internal support system. I was alone. That was the way it was. Just deal with the problem and move on. But being back here. Being around people that I care about deeply. It's just so hard to accept that this is the way it is. Just deal with it and move on. Sometimes I feel like one of those people in that nightmare situation where they are awake and fully aware of their surroundings, but have no way whatsoever to communicate with anyone around them.

I don't want to talk about it. I really don't. I don't want to look you, or anyone in the eye, and have the conversation about what's going on. But I still want you to reinforce that you can hear me. That you are all my family. And I want you to have a better idea of who I really am. Of how I actually feel. That's what this is all about. I can sit here, and I can write it down. This is my therapy. But it only works if I know you're listening. This is all so pointless if I am just talking to myself.

Typically there is one person that I have somehow, miraculously, managed to teach the secret code. The official language of the men in my family, communicated entirely through subtle body language and eye contact. It's a language that can only be read through empathy. But right now that person is having a hard enough go of it as it is, and I can't vent.

I am always a somewhat angry person. I have a very hard time dealing with people's utter lack of compassion for one another. My response to the overall lack of empathy that other people seem to display every single day is, somewhat ironically, anger.

Don't get me wrong. I know that there is a level of hypocrisy at work here. It's impossible to be human without being flawed. I know that I occasionally drive erratically, or that I also occasionally have too much to drink at the bar. I know that I probably do a slew of things that annoy others, but here's the thing. I try, really, really hard, to consider those around me. I attempt to consider the people who have to clean up after me, the people who have to wait behind me because I am making an illegal left-hand turn, the people at the other table who are just trying to have a conversation. So when other people, when seemingly all the other people, don't have these considerations, I get upset. Why does anybody pretend that it's the Golden Rule? It's obviously far less valuable than that.

In the past, I've been able to vent. I've been able to let it go. I move on. Lately, though, I swear it's just building and building like a little pressure cooker. I know that this is the result of several factors. I know that quitting smoking makes people irritable. I know that my wife having cancer is an added stressor. The same is true of all of the extra work, the compressed schedule in anticipation of law school, and the nightmare that I now know law school will be. None of these things help. But I swear to you, dear reader, I was starting to feel this way even before any of this happened. Now why is that?

Here's what I need: companions. I need people to help me not take things so seriously, even serious things. And I need to know that you know. I need your feedback.