Being a federal employee

As you may or may not know, I work for the federal government. I could make three times what I make if I got a job in the private sector, and believe me I have people clamoring to give me a job. But I believe in serving my country because it's a job that needs to be done and I'm one of the few people with the talents and training to make a difference. To me, the money is not the point: I am going to live a comfortable life no matter what job I choose to take, thanks to the amazing opportunities I've been given in life. I appreciate those opportunities every day. I would like to pay back how generous American society has been to me.

But now, because of the shutdown. I'm not even allowed to work. And all of the other technical people who I know and who I work with, we're really struggling. Job security and stability is the one benefit that is assumed with government work, and that has been taken away from us. If you don't think that the immediate effects of the governnment shutdown are bad, you're so far in denial that you're not going to listen to me anyway. The evidence is everywhere already. I'm even more concerned about the long term effects, by which I mean this little thing called STEMmorrhage going on in the federal government. It's an evacuation of our highly trained Science, Technology, and Engineering, and Mathematics personnel to the private sector because, quite frankly, they treat us much, much better than the federal government does. We are a valuable asset. The federal government can only operate smoothly with technically trained people making decisions about technical matters. We as a society should value these people in a way that reflects the important decisions they have to make, the important decisions that only highly-trained people can make with any degree of success.

Every day that passes, more and more of us wonder if it's really worth it to put our own well-being on the line to serve our country. I just hope for America's sake that enough of the federal workforce is going to choose to remain federal employees after how we are being treated in this debacle. The function of the government post-shutdown is going to depend on these people to get things operational again.

Though the shutdown is absolutely a disaster the scale of which we're barely able to grasp yet, on a personal level I've been affected strangely. I was recently hospitalized again for GVHD in my gut, which I think is going to finally make me take a bit of leave-without-pay. That's right, just before the shutdown I already went through about a month of forced leave due to my ongoing health adventure. I had about a week of leave saved up when I got sick, a week's-worth that I worked very hard to accrue. I have not taken a vacation since I started my job a year ago since I've been using all of my leave when I get sick and when I have hospital visits. A week is all I saved up in all that time, and I was looking forward to using some of it to go to a wedding with Ted's family in Texas.

Well, now that leave's gone. The irony is that with no end to the shutdown in sight I should be able to go to the wedding next weekend without feeling guilty about taking leave without pay, so I'm a little grateful for the time off. I'm still feeling really off from the most recent high-dosage steroid regimen, so I think it's helping me to have some time off. I'm even having some anxiety and other mental side effects that I'm trying to be honest with myself about and that I'm seeking treatment for, after independent recommendations from several friends. Technically I'm supposed to do this through work, actually, but with the government shutdown that is not an option. I am instead seeking care through the normal medical system. I think it's the only reasonable alternative, but some of the issues I'm having I'm not going to be able to discuss with my psychiatrist. So I don't know if the session is even going to be that productive, but I'm going to give it a try.

The shutdown didn't precipitate this need... the factors are too numerous to go into in this post. The shutdown certainly has been on my mind in the past week though. I don't understand the worldview of the people in Congress who think that brinksmanship is a good idea or that the very government that provides so much for them is somehow a bad thing. I understand even less the American citizens who support them in this government shutdown. I just hope that in the aftermath of this tragedy that American citizens will vote in a crowd of legislators who will fix this broken system where a group of renegades can hijack the most important institution in the world and hold it hostage over their own petty egos.

Feeling pretty sick right now, and for once it's not because of leukemia.

Assorted Insomnia

I have insomnia tonight. In fact, I'm starting to wonder if I shouldn't just go ahead and rename this my insomnia blog, since that seems to be the main thing that I use it for. In any case, I've compiled a list of the things keeping me awake tonight:

• My cat's snoring. It's pretty soft, and it's more of a wheeze than a snore, but it's definitely audible.
• Wondering if I'm physically addicted to codeine, since I think I might be experiencing withdrawal. It's a pattern that I think I just identified tonight: on the nights that I take my pain medication, I generally feel a lot better and don't have as much trouble sleeping. On the nights that I don't, my muscles feel really strange and I have a general sense of discomfort that leads to me tossing and turning. I guess I'll talk to the doctor about that. Speaking of symptoms, patterns, and talking to the doctor...
• Deciding to create a log of my health to try to eliminate some of the communication error when dealing with my doctor with respect to my symptoms and medication. I'll just keep it in a text file in Dropbox so I can show it to him on my phone, I guess.
• Fantasizing (night-dreaming?) about creating an artificial intelligence that decides to peacefully coexist with humans rather than destroy them. It turns out that she creates a humanoid robot body because it is desirable to appear human to interact with human society without revealing her existence. Oh, and it's a she because I named her Manta.
• Work stuff, i.e. whether it's worth it to put a lot of work into Twain for a resubmission now that I've graduated (Oh, and I got my diploma in the mail, so it's officially official), and what's going on with my background investigation and what I'm going to do if I don't hear back from those people soon.
• Wondering what other pieces of furniture we should rearrange in our apartment, after rearranging a bunch of stuff today to make way for a new TV in our bedroom. Looking into whether we can use Netflix on the Xbox without a Gold subscription (looks like we can't) or whether I'll just have to suck it up and move the Wii back there. It's not like we use it very often, and with Playstation All-Stars Battle Royale (PASBR?) on the way I don't see us playing much Brawl anymore.
• Enjoying some wordplay brought to me by Gwibber/Twitter. Rebleeting (retweeting on a blog):

  @JaneEspenson
  Commercial: "Watch dark circles visibly vanish." I think this is a case of an adverb beating a verb to death.

• After my laptop power cable just became unplugged, I remembered that my phone's battery is dying. So I went shopping and found a new one for $4 with free shipping on Amazon. I'm skeptical, but the reviews are positive at least.
• Starting to post all of this on G+, then realizing it's too long and turning it into a blog post instead.
• Adding a bunch of links to the post, taking me back to the days of Everything2, before Wikipedia was a thing. Or at least the thing that it is now. Oh, but don't follow that link. You might find posts (like this one) from me on Everything2 from when I was 15 or something, and I'm sure they'd be embarrassing (like this one). Remember kids, Internet never forgets.

And now, since I'm still not really sleepy, I'm going to sneak back into the bedroom and procure my Nook so I can read a bit more of A Clash of Kings to try to put myself to sleep.

Politics

I am doing great. Better than I've been in half a year. Part of it, certainly, is due to the enormous burden that's been lifted from my shoulders now that I've completed my PhD. I had my doubts, honestly, that I would finish it. Over the past three years, I've questioned my mental fortitude a lot and I've questioned whether I will remain a fully-functioning human being going in to the future. My PhD is a victory, one of several victories I've had recently, and these victories are making me optimistic about the future.

Another reason I'm feeling so well? I got my hip replacement three weeks ago. Sure, I can't go through metal detectors without setting them off anymore, but I can walk again. For the first time in half a year, I'm not in any pain. I can usually deal with pain, but when you're in pain for so long that it becomes a part of who you are, that's a real problem. It affects every aspect of your life. I couldn't even really see the impact that it was having until the pain was gone. But it is gone now, so I'm feeling great. Now I just need to work on my gait.

Months of immobility have done one thing in particular that I'd like to write about today: it made me political. As a young adult, I didn't really care about politics. It's actually a lot like sports (which I also don't really care about), and I never really felt like it mattered much to me. Now that I'm not legally allowed to be on Ted's insurance because it's provided by the federal government, I realize that I care quite a bit. I'm going to try to say this as succinctly as I can.

To my devoutly Christian friends: you know that I respect your beliefs even though I disagree with them. My family is very Christian, and I respect that. I even don't complain about them raising their children to only be exposed to one specific set of Christian beliefs even though I believe that it is detrimental to the children's development. I support their beliefs; not strongly, I admit -- for instance I don't contribute money to my brother's missionary work -- but I do support them.

That's why anti-marriage equality people infuriate me, and they should infuriate you to. The only argument that I have ever heard that has any legal basis for banning marriage equality is the argument that "redefining" marriage will restrict the right to religious freedom. Unfortunately for the anti-marriage equality people, this argument favors marriage equality. I believe that same sex couples should be able to marry. Why is it OK to remove my right to believe something, but not yours? Because I'm an athiest? Wikipedia has a great list of Christian religions that support same-sex marriage. What about their religious freedom?

You can continue to believe that marriage is what you think it is. There has never been a singular, consistent definition of marriage that everyone follows, and even the traditions, meaning, and purpose of marriage has varied significantly over time and across societies. The reason we have so much trouble agreeing on a definition of marriage is that it is hard to define. It means different things to different people. When enough people believe that the definition given by law does not adequately reflect the reality of life, it is time for that law to change. It is past time for that law to change.

So, obviously I support gay marriage, but I truly believe and I think many agree that it's a non-partisan issue. I'm a registered independent though I admit that I have liberal leanings. I understand all-too-well the power of the free market which is why I understand that certain people, especially the poor and historically disadvantaged, need to be protected from it in the interest of fairness. So I admit, I'm a bit biased in favor of Obama. I think that it's true that, just by virtue of being Obama and being irrationally hated by a small, vocal part of the population, America has not seen the progress it has needed. The Republican agenda of austerity, though, has never seemed right to me, and Europe is suggesting that that path would have been dangerous. I really hope that this election removes the obstructionist elements of Congress so that our lawmakers can finally get something done, but I'm not holding my breath.

Anyway, the thing that really prompted this post was the recent post about Romney bullying a fellow student. I don't care that the student was gay. I care that the student was seen as something "other", whatever Romney might have thought about this kid. I consider myself to be a very forgiving person, often willing to attribute bad behavior to a lack of empathy rather than actual malice unless the evidence says otherwise. I want to believe that people, on the whole, are good and want to support their fellow man. So I'd really like to say that this story doesn't affect my opinion of Romney, that it was just a folly of youth.

The reason I can't say that, though, is that the man hasn't changed. He's still a bully, rallying other likeminded people around him to persecute the people he doesn't like. Women, gays, the poor, the elderly, foreigners. They're all fair game to the Republican machine. Romney is comfortable with that, because he wants to be popular. Whether he once supported gay marriage or not, he certainly doesn't now, because that's not what his buddies support. The analogy that Romney is a well-oiled weather vane is incredibly accurate. What we need in these difficult times is not a president who will be swayed by public opinion even though they know that public opinion is wrong.

We need a president who has conviction, and who will do the right thing if they can. I am incredibly proud of Obama. In 2008, I understand that he could not support marriage equality. He needed the votes that he could get. No one believes that he did not personally support marriage equality, but as a matter of policy it was not something that he could take on then. Now, he has come out in support of marriage equality at great risk. He has done so because it is the right thing to do and he thinks that he can still win with that position. For what it's worth, President Obama, I believe you can still win too. I hope that you do. But it will all be for nothing if we fail to remove the obstructions from Congress so that we can put this country back on track. It will all be for nothing if we fail to get the votes to put laws into effect that will give equality to everyone. Re-electing Obama is important, but so is the rest of your vote.

Conclusion

Writing a conclusion for my thesis feels really strange. I kind of didn't really believe that it would ever be over, or maybe I just didn't believe that I would make it to this point. I'm not sure. Either way, it's definitely putting the last seven years in perspective.

I think in the end, my leukemia diagnosis coinciding with winning an award for Persona was especially bad for my mental health the past few years. I went from being amazingly lucky to have been in the right place at the right time doing great work, to being completely unsure of myself and feeling unable to live up to my past successes. It's bad enough when you're in grad school to compare yourself to other students, but to also have to compare yourself to your past self is a burden that can really drag you down, emotionally.

I remember being told to relax and focus on getting better by my advisor more times than I can count, and he's been right about it every time but of course it's not in my nature to listen to him. I kept feeling that so much was expected of me after Persona that it would disappoint Bobby and Neil if I didn't hit upon the next big topic and run with it soon. For a while after the bone marrow transplant, I found myself jumping from topic to topic, only discovering that someone else had beaten me to the punch or that the problem wasn't as novel as I wanted it to be. I became very critical of my own work and of the problems that I deemed worth working on. Naturally I also became very dissatisfied with many of the papers that I read because I had trouble believing that they even got published. At some point I set my bar way too high and I wasn't able to get it back down.

I've submitted something to SIGCOMM that has a chance to get in, though I'm not too optimistic. It's the first thing that I've actually gone all the way with and submitted since 2009, which feels like it's far too long ago. Part of me feels regret that I haven't managed to do more with my time in grad school. The other part of me, having just read through my entire dissertation, feels like I've actually accomplished a lot, even if most of it was from 2009 and before. More importantly, that part of me feels like I'm reaching the end of a journey, and I actually kind of find it hard to read the conclusion without getting at least a little emotional. This was a huge part of my life for the past seven years, and when you think about it, it's going to be a huge part of my life overall. Seeing my complete thesis makes it feel like all of the long nights, unreasonable demands, and unexpected difficulties on the road to the PhD have all been worth it. This is something I did. Nothing can take that away.

Health Care and OSNs

I'm working on my thesis right now. Rereading and editing our Persona paper, I reached the section about inherently private online social network (OSN) applications. I remember at the time thinking that sharing health information with doctors through an OSN was a weak example.

Of course, that was before I got leukemia. Now that I'm much more familiar with the health care system, I feel like this is the best reason for a Persona-like OSN. The. Best. Reason. Dealing with multiple doctors, health insurance representatives, and a pharmacy often reminds me of that old game: "Randy, would you please tell your brother that I'm not talking to him right now?" This is a more-or-less real example of how it works.

Dr. #1: "Randy, tell Dr. #2 that I said you can't have your surgery next week because you were sick last week."
Randy: "Why don't you tell him?"
(...Silence...)
Randy: "Well, you'll at least tell him what medications I'm on, right? He needs to know that."
Dr. #1: "No, you should do that too."
Randy: "Will he be able to do his job correctly based on second-hand knowledge given to him from someone who isn't a medical professional?"
Dr. #1: (flippantly) "Sure, why not?"
(...Pause for dramatic effect...)
Randy: "You know, I'm a fairly smart and organized person; how in the hell do your dumber patients manage to navigate this system without causing themselves serious harm?"
Dr. #1: "Sink or swim? Don't forget to go to radiology and get some x-rays; you'll need to take them with you when you see Dr. #2 next. They'll be expecting you."
Randy: "No they won't."
Dr. #1: "They will if you call ahead."
(...Randy shambles over to radiology on his broken hip...)
Receptionist: "Do you have a prescription from Dr. #1?"
Randy: "No, but he's in this same building. Shouldn't it be in your system? Can't you just call him?"
(...The receptionist stares at Randy as if he's from another planet...)
Receptionist: "If you don't have a prescription from Dr. #1 insurance won't cover it."
(...Shamble, shamble, shamble...)

OK, so, I'm being a bit unfair to the doctors and the receptionists and the nurses here. My doctor's not really a jackass like I'm making him out to be, and he's just doing his job filling a role in a broken system. Blaming him isn't going to change anything. As a wise man once said, "You're treating a symptom, when the disease rages on, consumes the human race. The fish rots from the head, as they say, so my thinking is why not cut off the head?" Unfortunately, the health care system, like other broken systems (campaign finance, the tax code, Congress) in America these days, seems to be more hydra than fish: the more heads you cut off, the more that take their place.

In any case, the primary barrier to better privacy controls in OSNs that might enable health care collaboration is not a technical one but a social or business one: how do you pay for it and how do you convince people to use it? I wish I had the answers to those questions, but right now all I want to do is finish my thesis and get a job.

Getting a job immediately after I finish my PhD in May is absolutely crucial: because of DOMA, I can't be included on Ted's health insurance so I will need (possibly in the literal, will-actually-die-without sense of the word) to have some sort of health insurance of my own. Kind of takes some of the celebration out of the fact that marriage equality is coming to Maryland very soon, since it doesn't do anything to change DOMA. I'm sure that President Obama's going to take care of that during his second term, but I don't have the luxury of waiting for that. I remember when I was younger thinking that politics really didn't affect me much and so I didn't care much about it. Suddenly, I feel like so many of the big issues of the day -- marriage equality, health care, government spending -- impact me specifically. Thank goodness I'm not also an immigrant woman... I might explode from the political pressure, or even worse, get featured on CNN in a fluff piece.

Resentment

It's 4 AM and I can't sleep. That means one of two things: either my medication is making me keep crazy hours, or my head is full of serious thoughts that only a blog post can dislodge. In this case, I think it's the latter.

I'm kind of in a rut right now. Ruts aren't entirely bad. A rut is stable, and that's something that can be welcome after an unpredictable cancer treatment. But obviously I wouldn't call it a rut if I weren't at least a little bit discontented. It's really the PhD thing that's causing these feelings. I'm ready to graduate. I should have graduated by now. It's going to happen in May, and it can't happen sooner, even if I were to work four times as hard as I'm working now. All of the pieces of a Rube Goldberg device are set up and in place, and I'm off watching videos of cats on the Internet while I wait for the thing to finish going off. I should feel more engaged in the process, and in my current work, but I don't. I just want to move on with my life.

I've continued to have success with my work despite my malaise and my health difficulties. I wanted to have a paper ready in time for NSDI, and I was pretty close to doing it, but I eventually decided that the stress of the deadline was bad for me and that it wasn't worth it to work myself into the ground when SIGCOMM, with a deadline several months later, was just as good of a fit for this work.

In fact, there are a lot of advantages to publishing in SIGCOMM instead of NSDI. It gives me time to polish the work to the extent that it deserves, a discipline that I think is often lost in the "publish or perish" pace of my field. NSDI is in San Jose, while SIGCOMM is in Helsinki. Helsinki just sounds better. Say it with me. "Helsinki." How could you not want to go there? Then there's the fact that I don't have to start moving on to a new project while starting my job search (I already have my first interview!). As far as I can tell, the only real advantage of NSDI over SIGCOMM is that, if the paper were to get rejected, I would have helpful feedback from the reviewers for resubmitting to SIGCOMM. But I have a simple solution to this: I'll just write a paper so good that no one can possibly reject it. I know, it's an elegant solution.

Did I mention that it's 4:30 AM? (Actually, now it's 5:30 AM - I had to come back to this point in the blog post to let you know that the next few paragraphs are going to ramble a bit, but that I promise I have a point at the end of it. And I think it's a good one. Stay tuned.)

Healthwise I'm kind of in a rut, too, finally. For the past few months things have been difficult though. Back in July or so, my GVHD got pretty bad, to the point where the rash had spread to most of my upper torso. Here's the thing about GVHD: it's an auto-immune response, so what you can directly observe happening to my skin is actually a pretty good measurement of what's happening to my internal organs. I don't know if you know this, but your immune system has hooks into every other system in your body: your muscular system, your skeletal system, your nervous system, your digestive system, your respiratory system, your reproductive system, and obviously your circulatory system. I'm sure I'm leaving some out, but those are the ones that come to mind, because those are the ones that I become acutely aware of when the GVHD gets bad, whether it's because they're causing me pain or just because I'm paranoid about what kind of permanent damage might be happening to them.

In any case, the fix is pretty straightforward. I've been around the block enough times now that I could probably have done the doctor's job for him this time (not to diminish his efforts, but his advice and recommendations have all been extremely predictable). I went on methylprednisolone, a steroid, at a fairly high dosage. It cleared up the GVHD in very little time, one or two days, as expected. But you don't just get to stop taking steroids; your body gets used to them and you have to gradually wean yourself off of them. And unfortunately there are a dozen side effects during that time.

Let's start with the mooboo, my pet name for all of the swelling, especially of my face, neck, and fingers. This is my least favorite side effect. You'd think that swelling wouldn't be so bad, since it's mostly cosmetic. But it turns out that cosmetic things matter to me. I find myself distracted in social situations, especially when meeting new people, because I can't help but be concerned with my appearance. When I look into the mirror, I see an ugly, twisted reflection of my self-perception: my bulging cheeks force my eyes and my mouth half-closed, simultaneously making me look half-asleep and unhappy, even when I'm not. What do other people see? Do they think I'm unhappy? Or not paying attention to them? Maybe I'm not paying attention to them, but it's because I'm too busy thinking about what they're thinking about me to just be a normal person. This is why I hate face-to-face social interaction. Give me text to hide behind, and I'll tell you anything. Really this is nothing new; I've been socially awkward like this for my entire life, but I haven't had quite as MUCH distracting me before.

Next is the eye bubbles. My eyes have been in terrible shape for the better part of a year, and there doesn't seem to be anything that the doctors can do. When I get enough sleep, it's better, and they'll last from about 9:00 to 3:00, which is most of a work day at least. After that, everything is so blurry that it becomes difficult to concentrate on anything complicated. This adds to my social interaction troubles, since I have trouble looking people in the eyes and find myself constantly wanting to just look at nothing. The blurrier things get, the less real they seem, and as a scientist I'm always struggling to get as firm a grasp on reality as I can manage. As for what's actually happening to my eyes, no one is quite sure and I'm waiting to see my ophthalmologist again. It looks like a filmy layer of tissue on the surface of the sclera near the conjunctiva. It's present on both eyes, and on particularly bad days it can really bubble out pretty far, to the point where it almost overlaps my lower eyelid. It's gross, and I want to get rid of it.

Then there are the gills, which I guess started even before I was on the steroids even though the doctors claim that they think they're caused by steroids. It's clear the doctors don't know what they are. They might just be stretch marks, and while it's true that I gained a lot of weight quickly at some point (because of the steroids inducing uncontrollable hunger), I don't think it was enough weight to account for these marks. It basically looks like my skin is ripping apart in a dozen places or so around my stomach, and under my armpits. The skin feels soft and thin, like it would tear easily, and when I put pressure on it the wrong way it elicits sharp pain. But overall, it's not my worst side effect by any means. It's not very distracting and it's mostly cosmetic and concealable, though I wonder what people at the gym must think. Maybe they think they're tattoos. I can almost trick myself into thinking that they look like a purple flame tattoo. Almost.

Then came the shambling legs, which were bad enough on their own merit and made worse by the fact that I had to travel quite a bit in August. The shambling legs were a combination of several things. First, all of the muscles in my body became incredibly weak, and my thigh muscles were hit worst of all. I literally could not stand up without using all four of my limbs. I had to use both hands on the rail in order to climb stairs, and I had to take a rest after each flight. I live on the third floor of my apartment building, so this was quite unpleasant. Getting from one terminal of an airport to another while carrying luggage was almost too much for me. If I did too much walking, I would have terrible leg cramps, at first only at night (ruining any chance of sleep I had that night) and then eventually even during the day. The worst was the one-hour flight where they never turned off the seatbelt sign and I had a cramp in my leg the entire trip. A normal person would have stood up anyway and tried to walk it off, but I'm nothing if not abnormal. And I was going to SIGCOMM. When you go to a conference, the whole point is to network socially, and that involves walking to bars and restaurants. I did my best, and everyone was accommodating, but it made me feel terrible.

Feeble, frail, fragile. Lots of f words. They describe me physically and emotionally. The last and perhaps worst side effect that I'll bother to mention is the brain fog. It's a combination of mood swings, inability to focus, and general detachment from reality. Basically, there were several times when my brain just wasn't working the way that it should, and (I don't know if this makes it better or worse) I was quite aware of that, perhaps too aware of it. It's the most unsettling of all of the side effects. As much as my body changes, I don't really feel like my body is ME. I'm my thoughts more than anything else. What does it mean for GVHD and my medication to be changing my thoughts? Philosophy, 5:30 AM, etc. etc.

So what was the point of all of that ranting? It's really all about my least favorite emotion: resentment. I'm not really going to get better. For a long time, I thought I would, and everyone else thought I would, and everyone said that. Sure, I'll survive, but I'll always be struggling with these side effects, and part of me resents that I have to go through that when most other people don't. I think it might be the ugliest emotion, even more unseemly than vanilla hate. And I don't know how to respond when my dad asks, "But you're getting better?" for the fiftieth time even though I've told him already in that very conversation that I've reached a sort of tableau in my treatment. So I respond the way anyone would, "Sure, a little bit," and I resent myself a little bit more for lying to him. He doesn't believe me anyway, and he shouldn't. But he asks it anyway.

I saw 50/50 last night with Ted and some friends. I remember telling Ted when we saw the preview for it that I thought the movie was made for me but that I didn't really want to see it. Not because I thought it would be a bad movie, but because I thought it would remind me of too many painful memories. And I was right, it did. There were a lot of similarities between me and the main character, though there were also many differences. I won't pretend that I didn't cry through most of the movie. There were some scenes where I was the only one in the theater laughing, and I'm certain that there were some scenes that made me cry for reasons that no one could possibly understand without going through the experience firsthand. I expected all of this.

What I was really dreading was the end of the movie. Spoiler alert: surprise, surprise, he survives his cancer. There is one scene of him months after his surgery, looking almost totally recovered, and it's the feel-good happy ending that you want. But all I felt was resentment. Why does he get to be completely free of it while I have to deal with what's basically going to be a lifelong condition? It's not the first time I've had this thought. I feel stupid, mean, and petty for thinking that other cancer survivors somehow have it easy because their cancers can be cut out once and for all, but I can't help but feel that deep sense of resentment for the powerlessness of my situation.

I try to remind myself that I'm lucky to be alive at all. It's profoundly lucky that medical researchers have been able to fight a cancer of the blood at all given how pervasive it is. Heck, it's profoundly lucky that life even exists at all, and if cancer is a natural consequence of genetic variation then I guess someone has to get it. I still feel profoundly unlucky though, because I am profoundly unlucky. And I'll probably continue to resent that just a little bit, no matter how hard I try not to.

Achievements

I told myself that I wouldn't post another post on this blog until I published Chimera, and that's exactly what has happened. To remind everyone, Chimera is the fantasy novel I wrote for NaNoWriMo back in November. A lot of comments and proofreading later, it's now available for purchase! I'm really excited about it, because I really enjoyed writing it and I hope that people will enjoy reading it. I'm already thinking about the potential for a sequel this coming November, and I have a lot of good ideas for it. The real question is if I'll have time to work on it.

The point of NaNoWriMo for me was to recover from my bone marrow transplant treatment in the most important way: to become a productive person again. Months in the hospital can really weigh on you. It disrupts your plan for your life, and if you aren't careful, all of those skills, talents, and muscles that you've spent your entire life working on can atrophy pretty quickly. I wanted to reclaim my lost productivity, and NaNoWriMo gave me a solid and fun goal to do that. The best part is that it worked.

Shortly after NaNoWriMo, I had the idea for a mobile app, a sort of modern jukebox where you can vote on the music playing at participating social venues. Then UMD announced a competition, the Mobility Contest, a joint venture between the business school and the CS department to develop a mobile app that improves campus life. With the renewed productivity that NaNoWriMo gave me, I dove in headfirst, simultaneously juggling my research responsibilities and Atmo, my mobile app. Several months of coding later, I won the second place trophy and a giant check for $2000. It was great, and exciting.

Although I have been very productive and very successful for months now, I've kind of run out of steam. I put on a bunch of weight - from my medication and eating habits, not because I've been working hard - and have been feeling a general weariness that makes it difficult to do any work outside of the time I typically reserve for research. This is becoming a problem, because Atmo is turning into a full-fledged business, I'm the only developer for it, and there's a lot of work to do for it still.

I've started waking up earlier and doing Wii Fit daily; I'm hoping that I can turn that into some momentum to get my life (and my fitness) on track again. I've started walking to and from work instead of taking the bus, now that it's warm out. I'm always taking the stairs instead of the elevator. I've only been doing all of this for a week now, but I'm already feeling the results (even if I'm not seeing them yet). I feel sharper, more focused, and I have more energy in general. The only problem that this isn't solving is my eye problems. GVHD can apparently give you chronic dry eyes, and even though I'm on Restasis now it doesn't seem to do much for me. I can stare at a computer screen for about four or five hours before everything starts getting blurry and my eyes start to ache. So even when I feel good enough to do more work, it's often very difficult to do so, and I find myself doing stupid things like coding with one eye closed. This is one of the harder changes to adapt to, but I'm working on it. I'm nothing if not adaptable.

I have to admit that part of the reason I did the Mobility Contest was for the money. Medical bills really add up over time, so I thought it would be good (and perhaps necessary) to boost my income. This was especially relevant because Ted had a lot of trouble finding a job. It took him about a year, but he finally got the job that he wanted with the Department of Defense. It pays really well, so I'm far less worried about our finances than I used to be. However, we did just get a new car (so that he could get to his new job), and that's going to be pretty expensive for a good long while. We need a bit of time to see how our finances are going to be in the long run, but in the meantime you can always help by buying that book I mentioned, or by pointing an Angel investor our way for Atmo.

Spending Spree

I don't know what's wrong with me. You'd think that with the impending uncertainty involving Ted's employment that I would be a bit more hesitant to spend my money, but it seems that the opposite is true.

First, there have been the necessities.  For example, the $340 on Fang Heisenburg, our car.  This is in addition to the $1000 for the initial set of repairs and the $300 for the tune-up at Jiffy Lube.  I admit it now: we overpaid for a lemon.  I blame it partially on my health.  We went car shopping very soon after I got out of the hospital, and car shopping took a lot out of me, to the point where I was too willing to settle and neither Ted nor Dad stopped me.  The car itself is a 2002 Ford Escort with 93k miles on it, and we paid about $5600 for it after taxes and fees.  Then there's the $800 insurance that I paid. Car ownership is terrible.

In any case, most of the car expenses have been spread out, so it's not too bad.  It's just that there have been a lot of annoying expenses, lately.  $300 to replace my failing PS3. $120 to replace my failing router (granted, I got a top of the line router).  It just feels like everything is failing around me.  And just a few days ago, Ted's laptop (and only computer) died.

Then of course there's food, and I've been eating a lot of it.  Food can be very expensive when you consume it in those quantities. I felt bad that I was eating so much food, so I picked up the grocery bill by myself several times after getting out of the hospital.

Of course, my real weakness is luxuries. I've been splurging on video games and downloadable content now that I'm enjoying games again.  I've probably spent more than $200 on that stuff in  the past month. Then there's also the Nook for $260 and probably about $100 of e-books.  Pretty soon I'm going to get a Droid X for $200 and I'm going to finally start paying for my cell phone, which will be $40 a month on our special retiree family plan (Dad used to work for Bell Atlantic) including voice and data.  Thank goodness today is payday.

At least I have prescription insurance now! That makes my medicine a lot cheaper at least.  A LOT.

As for my health, things look good right now.  I got the vaccinations that I need in preparation for the splenectomy. I'll be meeting with the surgeon next Friday to schedule that.  My blood cell counts are much better than last week, too.  I did end up coming home an hour early today, though, since my shoulders are kind of hurting at the vaccination sites, it's pretty disracting, and I had reached a good stopping point.

There's a Splenectomy in Your Future

Well, the CT scan showed that the spleen is about twice the size that it should be, so at this point we're pretty sure that it's coming out.  I'm OK with it, and once I convinced Mom that I would be better for it, she seemed to be OK with it too.  I think it was the doctor telling her that there could be leukemic cells hiding in the spleen that finally convinced her that removing the spleen was OK.

I think I might see if I can't get a Droid with a data plan before I go into the hospital.  Hopefully by then my copy of Baldur's Gate will have arrived, and hopefully it will work with PlayOnLinux on my laptop.  And who knows, maybe I'll even do some work while I'm in the hospital this time.

There is some good news: I only have to see the doctor once next week (instead of the previous twice-a-week).  That means I get to go into work four days instead of three. Oh, except the University is closed Monday.  As much as I shouldn't take the time off, maybe I will anyway to spend the day with Ted.  That would be nice.

After my doctor's visit today, I was going to try to get our car inspected for emissions and get a prescription filled.  On the way to the emissions inspection station, Ted discovered that if the Check Engine light is on, you fail automatically, so I'll have to take the car in to the mechanic again tomorrow and hopefully he can fix that before the emissions inspection deadline on the 7th.

Then I went to CVS to get my prescription filled.  First, they had a lot of trouble verifying the prescription. Then when they did, they didn't have the generic version of the drug (tacrolimus). She gave me two pills of the brand name drug for free and told me to come back tomorrow after they ordered the generic stuff.  It's only going to be $5 with my prescription coverage (as opposed to the $200 it was before)!  I don't understand how health insurance/health care works.

Finally, Ted just got the unfortunate news that the NSA will not be hiring him, so pretty soon he'll be unemployed.  If you or anyone you know is looking to hire a math Ph.D., let me know.

Going Back to OK

As expected, Mom worried everyone for no reason.  The bone marrow biopsy revealed that there were still no cancer cells in my bone marrow, which again is a really good sign that the leukemia is cured.  What's more, Dr. Yanovich (my primary doctor, now) felt around and he thinks my spleen is actually shrinking, that the CT scan was in some way anomalous due to the medication I received in the hospital.

So basically Dr. Akpek made my mom panic over nothing.  And panic she did: I didn't realize how worried she was until Billy came with her to the doctor last Monday.  She felt a little foolish after I explained things to her, but at least she's not as worried now.

Just to be sure, they did another CT scan on Monday.  I'll get the results tomorrow, but I'm sure my spleen will be smaller.

My appetite is becoming managable.  I think it has helped that I've had a lot to do recently, between Ted's parents being in town and with Bobby and Hillary leaving. I haven't had a chance to cook for almost a week, really, and I've been kind of forced to eat out more than I'd like given my neutropenia.  But the food was great, and I don't think I had to pay for anything.  Always a plus.

My energy level is waning, but I'm still getting in to work whenever I don't go to the hospital.  I'm just really tired afterward, you know, like a normal person.  At least I'm making progress again, finally, even if it's a bit slower than I'd like.  I'm still going to try to propose this summer, but we'll see if I manage it.

Finally, I think my depression is finally clearing up.  I was feeling pretty down while I was in the hospital, and I could tell because I didn't want to play video games.  But that's all cleared up now, and I'm enjoying Star Ocean: The Last Hope (even though I had to replace my PS3 to play it) and Civilization 4 (which I got to work in Linux).  It feels really good to be getting back to a fairly normal life.  Now if I could just cut down on the doctor visits...

Pop Bone Marrow Biopsy

I got the results from my CT scan.  My GI tract has healed; I could have told you this because my bowel movements have been nice and solid recently.  Unfortunately, the CT scan also revealed that my spleen is growing again. This could be a sign that the leukemia is coming back, so the doctor decided to do yet another bone marrow biopsy. Unfortunately, the doctor either didn't care how or didn't know how to make the bone marrow biopsy as painless as possible; it really seemed like he wasn't even trying. It was hands down the most painful thing I've ever experienced, though gout still reigns supreme as being the most painful for the longest amount of time.

In any case, depending on the bone marrow biopsy, I'm not sure what's going to happen.  The doctor said that there's a chance they might remove my spleen.  Apparently the spleen acts as a sponge for blood cells, so my enlarged spleen is part of the explanation for why I've been needing platelets and white blood cells recently.  Removing the spleen would help with this, and I guess the liver will pick up the slack, according to the doctor.  Still, I hesitate when the doctor suggests removing an organ; it sounds like such a permanent solution to what could be a temporary problem.

Naturally, Mom and Dad are freaking out about this. What's worse, they're telling other people. They don't understand that it's not unusual for leukemia patients to have their spleens removed, so they think this is much more serious than it is, and they've convinced everyone else that that's the case too. That brings us to the party.  I got to see most of my family on Saturday at a huge pre-wedding party for my brother Bobby and his fiancé Hillary.  Everyone expressed that they were concerned for me and that they were praying for me.  Most of the family started out by saying that they heard that I got some bad news recently.  I had to repeat about twenty times that things were going well and that it really was just some routine tests.

And really, things are going very well.  I feel great.  I went in to work three of the five days this past week since I was at the hospital the other two days.  I got myself organized, including upgrading to Ubuntu 10.4 on my work, home, and laptop computers -- I have to say that I am quite pleased with it, though they need to fix some of the bugs with Gwibber.  I started working on my proposal document, and I have about 8 pages there so far, though a good chunk of that is basically lifted from the Persona paper and needs to be condensed.  All in all, I feel great, I'm being productive, and I'm happy.  I don't think I could ask for more than that.

Oh, and even better news: because my GI tract is good now and because there's the concern that the leukemia could be coming back, the doctor dropped my steroid dosage drastically and continuously.  I'm nearly off the steroids at this point, and today is the first day in a long time that I've actually eaten roughly like a normal person.  I'm still a little hungry, but for a change I don't feel that I need to eat.  As far as I'm concerned, that's victory.

Steroids

First of all, now that I'm cancer free*, I've decided that I'm not Living With Carmichael anymore.  Hence the blog title and URL change.  100% Go For It! is my new attitude toward life and, in particular, work.  I really want to get back into work in a big way, and though physically I'm still a bit weak I think I'm finally getting in to the right mindset to get some work done.

In other news, steroids suck.  I'm on 72 mg of methylpredinsalone each day: 60 mg in the morning and 12 mg at night.  Sure, I guess they're giving me anti-inflammatory gut-GVHD-healing powers, but the side effects are terrible.  I'm all puffy with edema, my muscles are severely weakened (though they are getting stronger with use), I'm temporarily diabetic and have to manage my blood sugar with insulin injections, my appetite is absolutely ridiculous, and sometimes -- like right now -- I can't sleep. It kind of puts a cramp in my new 100% Go For It! attitude when I know I'm going to be tired in the morning, but there's nothing for it but to take more steroids and keep going.

To give you some idea of my appetite, here's what I ate today:

• 6:30 AM: Full bowl of Corn Pops cereal
• 7:00 AM: 2 Hard-boiled Eggs (including yolks)
• 8:15 AM: 2 Turkey sandwiches and 2 pickle spears (this was supposed to be lunch, but I got bored and hungry while waiting for a bus)
• 9:30 AM: 1 bag of Doritos (I needed something to snack on at work!)
• 12:00 PM: 1 Double Quarter Pounder with Cheese and 1 Large Fry from McDonalds (I'm not supposed to eat out on my neutropenic diet, but I can't resist sometimes; at least I nuked it in the microwave before eating it)
• 2:30 PM: 1 bag of animal crackers (I needed a snack after a meeting with my advisor)
• 6:00 PM: 1 large beef stir-fry (I estimate that my recipe serves 3 and I had half of it)
• 7:00 PM: 1 popsicle, two somewhat large pretzels, and a handful of gummy worms
• 8:00 PM: 1 entire quarter package of Saltines
• 10:00 PM: 3 cups of beef broth
• 2:30 AM: A handful of Corn Pops (I'm starving and I can't sleep -- not a good combination!)

I really don't know how many calories that is, but the McDonalds is probably over 1000 alone, not to mention all of the soda I've been drinking throughout the day (at least 2 20oz pepsis and 4 12oz cokes). The doctors sent me home with the instructions to try to limit my diet to about 1800-1900 calories per day; it just cannot be done!  Not on this many steroids. I'm hoping the doctor will cut my dosage down on Thursday, but I have a feeling he won't because I am still occasionally having a little bit of diarrhea and I think that's their metric for reducing the steroids. On the other hand, maybe the CT scan I got on Monday will show a drastic reduction in the inflammation in my gut and they'll feel more comfortable reducing my steroids. I wouldn't be surprised if the CT scan were very positive; in general I've been having healthy bowel movements and my GI tract feels fine now.

Okay, an hour later it's 3:00.  The real question: can I get back to sleep?



*A recent bone marrow biopsy indicates that I have 0% cancer in my stem cells and 0.004% cancerous cells in the blood stream -- supposedly the graft-versus-host effect of the stem cell transplant will eventually totally fix the blood stream but it takes time. I'm not sure how many significant digits there are on the 0%.

One step forward and two steps back

Well, no one said a stem cell transplant would be easy.  For a long while, I was tolerating the effects of graft-versus-host disease, an important part of the healing process because it comes along with the graft-versus-tumor effect that will guarantee that my cancer does not return.  A recent bone marrow biopsy revealed no cancer in my stem cells, and a very small amount in my blood stream (which is apparently OK, and what the graft-versus-tumor effect is taking care of).

Unfortunately, I finally got to the point where my graft-versus-host disease was no longer tolerable.  I had between stage 2 and stage 3 GVHD of the GI tract, and it got to the point where I couldn't keep anything down; I was vomiting nonstop and had unstoppable diarrhea.  So, I was readmitted to the hospital and put on a ton of steroids and immunosuppressants just as I was when I was initially treated for the stem cell transplant.  So in some sense, I feel like I'm back to square one.  But at least I have hair now!

Still, despite being back on as many --- actually more --- meds as I was back then, I am actually feeling a lot better than I had been recently, so that's good.  The only problem right now is that my hospital stay has once again left my muscles fairly atrophied.  I'm slowly building my strength back, though.  I'm able to get around the apartment pretty well at this point, though I still need to use my arms to stand up from sitting down.  Getting up and down the three flights of stairs to my apartment is still pretty tricky.

In terms of keeping my spirits up, I made a very good purchase recently: a Nook from Barnes & Noble. I absolutely love it.  I wish I had it during my recent hospital stay, but at least I'll have it for the next one.  It is incredibly comfortable to read books on it.  It feels like it was designed for my hands specifically. I suspect I will get a lot of use out of this thing; I've already read four of the Dresden Files books on it.

Additionally, I got a recipe book.  I've been having quite a bit of fun with it, and I've made a few really good dishes.  I also misinterpreted something that resulted in a glassy explosion.  It nearly traumatized me, but Ted helped me clear it up and calm down.  Hopefully I learned something and won't make the same mistake again.  The Nook isn't great as a cookbook since it takes some work to get to the recipe you want, so I might need to get a hard copy. At the same time I'd prefer to just develop an intuition and a mental repository of recipes, maybe even just compiling my own little recipe book from the recipes that are a success.  So far, my big successes have been jambalaya and something I'm going to call a lemon catfish pocket.  I'm fine with making scrambled eggs and bacon, though I had some difficulty with pancakes.  My home fries weren't quite right, but they were still tasty and I think I can fix them with some work.  In short, as per doctor's orders I've been cooking every single thing I've eaten for the past week, and it's been a lot of rewarding work.  And I've been eating a lot; the steroids make me ravenous.

So that's a basic rundown of my current status.  I haven't even been thinking about work, but I'm hoping I'll be able to start back up on Tuesday this coming week.  I really need to find a way to get back in to programming, research, and graduate school.  It's remarkably difficult to get back into the swing of things when you've been on such a long hiatus; not only is my confidence shaken, but I'm not sure where to even begin working again.  I guess all I can do is my best.

Allogeneic Stem Cell Transplant for the win!

I've been neglecting my poor blog for way too long at this point. The reason for that is that I spent a lot of time in the hospital, even during the one month that I was supposed to be at home recovering.  It's not unexpected to have to come in during that time, but I had to go in three times, and each time took nearly a week. The first time I mentioned in my last post.

The second time was my own stupid fault; I really wanted to hang out with the lab so I joined them for Korean barbeque.  I thought that since I was cooking the food myself, so it would be kosher for the neutropenic diet. The next day I was vomiting and I had a fever, so it was off to the hospital again.

Then the third and final time I had all of the symptoms of meningitis: light sensitivity, migraine, and a stiff neck.  Fortunately, I guess, it was not meningitis, but instead it was the leukemia making its way into my spinal cord and meninges. I say fortunately because apparently the total body irradiation that was already planned was the treatment for this, so we didn't have to go too far out of the way to treat it, and everything was handled in time so as to not cause any problems.  Unfortunately, this put me into the hospital several days before expected, and I would not have another chance to go home between then and the stem cell transplant.

Then the snow happened.  Everyone was freaking out about it --- understandably so, from what I could gather --- not the least of which was my brother Billy, the stem cell donor, who needed to be here at the hospital at 7 AM for four days straight to get the Neupogen injections that would sprout peripheral stem cells into his blood stream for collection on Friday, February 12th.  Due to the snow, Billy eventually just decided to spend that week up here in my room with me.  He was going out of his mind by the end of it; it's kind of a wonder that I've held up as well as I have now that I think of it.  Or maybe I only think I'm holding up well.

Anyway, while he was getting his Neupogen, I was actually preparing for the stem cell transplant. This involved getting a new super-duper chemo, getting three days of total body irradiation (TBI), and moving over to the bone marrow transplant wing of the hospital.  There's not much to say about the chemo; it was brutal for the few days that I felt it, mostly due to the terrible sore throat that made it difficult to eat and due to the raging diarrhea it evoked. The TBI was strange, and left me all tingly for days, but other than the discomfort from lying perfectly still on the table it really wasn't that bad (unless I've conflated the effects of the TBI with the chemo, which is entirely possible).

The hardest part by far has been the transition to the bone marrow transplant wing.  The room is much smaller, much harder to work in (since there's no place that could serve as a table), has meaner and less competent nurses, and has spotty wi-fi to boot.  The only thing it has going for it is a view that just reminds me how much I want to be elsewhere. Oh, and thanks to Tacrolimus, an anti-stem-cell-rejection drug, I'm now hooked up to an IV 24-7.

In any case, we survived the snow with only a minimum of grumbling from my family, for which I was thankful.  Then the transplant came and went --- it was really just like getting any other blood product, so at this point it was very anti-climactic even though the whole family was there (sans kids). Then the family left, and I was left with a reasonable amount of peace and quiet for the next few weeks.  I still get plenty of visitors from friends, family, and health care staff, but I generally have enough privacy to watch some DVDs, watch some streaming Netflix (when the Internet works), or play video games.

Since the transplant, things have gone pretty well.  As I mentioned, for a while the biggest problems were diarrhea and a sore spot in my throat.  Those are all but a memory now, but now the stem cells have engrafted into my bone marrow.  This is a good thing, and it's what we wanted to happen, but unfortunately it came with an acute case of graft-versus-host-disease (GVHD) in the form of a rash.  This might be a good thing though, since GVHD increases the likelihood that the cancer will be 100% cured.  In the meantime, they're treating the GVHD pretty well with steroids, so I think everything is actually going pretty well.

There was some talk of me getting out of here this weekend, but I think it's just talk.  Currently, all of the expensive drugs are taken care of through various patient assistance programs, though I'm waiting for the voriconazole to ship and to get confirmation on both eligibility and shipment of valcyte, which I think is a drug that will weaken my immune system (to help deal with GVHD).

Other than all of that, I'm currently in a holding pattern, playing "the old lady who swallowed a fly" with my medications.  I'm ready to get out of here, so here's hoping we can effect that some time soon.

In and Out

It's been a little while since I've written, because I've been too busy enjoying life outside of the hospital. My chances of surviving the bone marrow transplant are good -- we think 70% -- but it's not a sure thing, so I've decided that I should just enjoy myself with the time I have until the transplant. And I have been enjoying it, just being at home with Ted, relaxing, watching TV, playing games.

In terms of my health, though, things could be a bit better. I knew when I got out of the hospital last Wednesday that my immune system was very weak, so I tried to be careful. I wear a mask when out in public. I sanitize my hands constantly. It turns out that germs are really hard to avoid, and our bodies do a really good job of fighting them!

That brings us to this past Wednesday. I went in for my infusion for the day, and told them that my throat was a little sore, so they prescribed some antibiotics. Later that night, I had chills. I called the cancer center, and they told me to take my temperature. It was 101.9 F at that point, though three hours earlier it had been 98.3 F. I clearly had an infection, and no way to fight it, so Ted and I left immediately for the hospital.

Ted doesn't like driving; in fact, neither do I. Since we don't have a car, we were fortunate that some of our friends were out of town and that we were borrowing theirs. Ted overcame his reluctance to drive to take me up to the hospital, and we made it there without any problems. By the time we were there, though, I was really out of it.

Things happened pretty fast. They covered me with a heated blanket, and gave me some antibiotics. My fever was pretty high at some point; they weren't constantly taking my temperature, but I could feel it. At some point during the night things must have turned around, because I woke up without a fever the next morning. In fact, I felt pretty good that morning, though I got worse as the day went on. But the important thing was that I was safe.

Over the next few days I learned that it was either a bacterial or fungal pneumonia and they were treating both types just to be sure. I had a CT scan of my chest done, which showed some nodules that made them think it was probably fungal, but I hadn't been given any antifungal medication before I started to feel better. In the end, we're not exactly sure what it was, but the important thing is that it has been treated. During my stay I had some problems with low blood pressure early on, but that went away as they infused me with blood and saline. They also took the opportunity while I was there to do another bone marrow biopsy, which hurt a bit more than the first one though only briefly; I'm not sure what Dr. Rapoport is looking for from the biopsy, but he'll have the results when I see him on Thursday and hopefully it will give us more information at least. Then finally last night, Friday night, I was discharged.

Between my new medicine and the medicine they gave me on Wednesday, I ended up having to shell out more than $500 for prescriptions. Two medications in particular were more than $200: moxifloxacin and ciprofloxacin, both antibiotics.  All told, I now have twelve pill bottles which contain eight drugs. I still take seven of those, the only exception being a temporary stop on dasatinib, a.k.a. Sprycel, for reasons I'll explain in a bit. That leaves me on the following seven medications: acyclovir (antiviral), allopurinol (prevents gout), amoxicillin (antibiotic), moxifloxacin (antibiotic), ciprofloxacin (antibiotic), pantoprazole (prophylactic gastro-intestinal something or other), and voriconazole (antifungal).

It's really this last drug that interests me so much: voriconazole. If you look it up on Wikipedia, you'd see that as a side effect it can cause "visual disturbances" that occur within half an hour of taking it and last for about 30 minutes. My nurses said that I might notice some changes in my perception of color. I only started taking the voriconazole on Thursday, and I didn't notice anything too odd while I was in the hospital. When my mom was driving me home, everything looked way too yellow; in fact, when I got to the apartment I was kind of weirded out by the fact that my blue apartment door looked green. My TV at home looked really strange, like each individual pixel was shimmering. I figured this was pretty standard hallucination stuff.

Then I went to bed last night, and had quite a bit of trouble falling asleep. I would see things even with my eyes closed, but they were most vivid when I stared at the plain white ceiling. It was really a lot like when you stare at something that's red for a long time, and then look at something white and see the after-image of the same thing in green. Only now, I just had a constant supply of changing after-images.

I could snap myself out of it temporarily, but it would start back up again, and it always started in the same place. It started with words, thousands of words, some moving left and some moving right at about the same speed, of varying sizes and transparency. Every time I tried to read them, but it was almost impossible, like chasing an after-image when the original image wasn't in the center of your vision. I picked up a few words here and there. I remember I saw "time" multiple times. I don't remember the other words, but they were all unremarkable. As I would try to focus on the words to try to read them, the image would gradually change, as if I were zooming out to see that the words were just some part of some larger geometric pattern.  Then came a bunch of psychedelic colors and scenes a la 2001, but not quite as vivid; again, more like what the after-image of the trip in 2001 would look like if you could view it in real time. Then my vision would return to normal for a second, as if to tell me that the show was about to start. And start it did.

It felt like I was dreaming, but I was awake.  It was almost like the end of a dream, when you're just about to wake up, and your consciousness recognizes the dream but wants to give it a conclusion. You still believe in the dream, but you're aware of what's happening and you can steer the dream to the point of fantasy. It was almost like that in the sense that I had both consciousness and vivid perception, but I certainly was not in control of the things it showed me. And it showed me many things, some fantastical and some mundane, but all of them in amazing detail. I remember an old black man sitting with two of his friends, smiling in contentment. I remember a phoenix flying away from a group of anime adventurers who were protecting themselves with a magical barrier. I remember an old photograph with two men and a woman in it. I remember seeing a young boy throw a magical frisbee into the sky as his entire village looked on in awe, only to chase it up a mountain and discover a golem at the top. And these are just the ones I remember off the top of my head.

Honestly, it's no wonder that a lot of artists turn to hallucinogens for inspiration, because what I saw last night was amazing and beautiful.  It was a fantastic experience, which is why I'm doing my best to share it with any readers out there. But ultimately it is just fantasy. Now that the hallucinations are gone, I'm back to wondering about my health and what long term effects, physical and mental, these drugs will have. Right now, I feel mostly healthy and mostly sane, so I'm going to count that in the win column.

I am concerned about one thing, though. My blood counts are low, and they don't seem to be recovering like they should. I don't really know what this means, but I do know that it's probably a bad sign when the doctors don't know what's going on. This is why I've been told to stop taking the dasatinib. I suspect the bone marrow biopsy will shed more light on this particular problem, and I'm not sure that this problem even affects the bone marrow transplant at all, so until I know more we'll just have to wait and see. If all goes according to plan, the bone marrow transplant will happen on or around February 10th.

Hospital Thoughts

I've been in the hospital since the 11th, I think, and it's the 26th now. For the most part, my treatment hasn't been much of a problem.  Except for a few days where I couldn't get my eyes to focus enough to even watch TV, things have been moving along quickly.  I suspect that a season of 30 Rock and three seasons of Battlestar Galactica have had something to do with that. 

I've been on all manner of drugs, and at some point I just lost track of them. I think before I get out of here I need to get some of this information written down.  Maybe I'll also get a log of my blood cell counts.

Among the more eventful days in here: when Katrina visited, she gave me and my advisor, Bobby, mohawks. We figured that since my hair was going to fall out at some point, it would be fun to have a mohawk until that happened.  Of course, I was expecting my hair to fall out any day, but it's still hanging in there.  I assume it will fall out during the final round of chemo before the bone marrow transplant.

Also fun was Christmas Eve.  We had Christmas at the hospital, and I got to open my gifts.  My whole family showed up, which was nice, but I was tethered to my IV pole sucking down blood, which put a slight damper on the occasion.  Still, we had a good time, I think.  Mom is still struggling with everything, but she made it through.  She's having a tough time with life in general, and I tried to convince her to talk to her doctor about it, but she says she can only deal with one problem at a time.  I hope she can get over this, because I'm really worried about her state of mind after all of this.  I just hope that she'll feel better about all of it when the bone marrow transplant is done and when it looks like I'm cured.  Only time will tell, though.

Even though my stay has been uneventful and not too bad, I'm itching to get out of here. I want to go back to work as much as I can, because I feel totally useless right now with my life, which is to say my social and professional lives, trapped in limbo like this. More than anything though, I just want to be at home alone with Ted for just a little while, for things to be like they were before I came in here. I miss him so much, and his visits aren't really the same as being with him at home.

The good news is that my blood cell counts are now trending upward, so I'll probably be out of here some time this week.  I hope that life can go back to an approximation of something normal, but it's tough to say at this point, with the bone marrow transplant looming over me. I need to start thinking about my research again, and in particular I need to deal with some bureaucracy involving my proposal. Technically I'm supposed to propose by the end of the semester, and while I'm sure I could use this as justification for an extension, I'd like to get my proposal done with.  Not to mention... Well, let's just say that Bobby is taking all of this very hard, and I want to make sure that I graduate as soon as possible because it's in everyone's best interest. I would have liked to be able to pad my CV a bit more before getting ready to go on the job search, but it's too late for that now.  I kept putting off doing internships, because it never seemed like the right time, and now this summer I'm sure I need to stay in the area for my doctor visits, so it looks like I'm just never going to make it into an internship; I hope that doesn't hurt me too much when it comes to getting a job.  Still, all of that is really a long way off, it's just tough not to think about long term goals and challenges after having my life put into perspective the way it has been recently.

Finally, as much as I love Zipcar and think it's a great idea, I don't think it's going to work for me anymore with all of the doctor's visits. For that matter, it's time for Ted to get used to driving again, especially since he'll probably be getting a new, real job this summer. It's time for us to grow up and become more responsible, and I think a part of me is going to really miss grad school when we have to move on, no matter how much I've complained about it. It really has been a special time, and I wouldn't trade it for anything.

A Post to the LLS Boards

I rarely write such in depth posts, especially to the people I met on the CML board on the LLS web site, but I figured that since it was pretty in depth and it summarized a lot of the stuff I've been thinking about that I might as well include it here as well. Enjoy!

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Things are going very well.  My treatment seems to be working as the doctors plan, with few side effects. I'm not lacking for candy, food, or entertainment thanks to friends, family, my Wii, Netflix, and Hulu. The only thing I wish is that my boyfriend could be around more often, but unfortunately he's stuck in College Park giving his students their final exams, and even once he does that he doesn't have a car so he can kind of only get up here based on when my other friends and family are stopping by.

Other than that, things are looking up and I'm excited to see my brother Bobby on Wednesday, since he's getting back in the US after being in Japan for several years doing missionary work.  He actually planned this four-month furlough before I was even diagnosed with CML in the first place, so things are kind of working out for us in that regard.  My other brother, Billy, is my bone marrow match, and we haven't tested Bobby yet and may not need to. I feel especially bad for my mom...  Christmas is her favorite holiday, and for the past few years she was so sad that Bobby wasn't around and that we could only see him over Skype.  She was so excited that we were all going to be together this year, but now it's just not going to happen, because my niece and nephew are too young to be allowed to visit.  So it looks like I'll be the one on Skype this year.

I think the hardest thing for my mom, and the rest of my very religious family, is that I'm an atheist.  My mom seems to think that it means I must have given in to despair now, when really that couldn't be further from the truth.  I just feel bad that it's such a struggle for them, and I wish they shared my point of view. If I could, I'd pretend that I had converted to Christianity while in here just to make them feel better about the possibility that I might not make it through this.  There are a few problems with that.  The first is purely a logistics problem; I'm a terrible liar and I can't keep a secret --- that's pretty much the entire reason I came out to my family when I was 16 years old, since living that lie had been weighing on me very heavily.  In fact, I only waited that long because I wanted to make sure I had my driver's license before I told them (because you hear some horror stories about children being disowned).  In retrospect, I don't know what I was so worried about.  I couldn't ask for a more loving, caring, or accepting family. That being said, the other problem with faking a religious conversion is that I couldn't possibly deal with the fallout.  I plan to survive this crap, and recanting my conversion once I'm out of the woods seems too cruel to even consider.

So I'm hoping that my mom can square herself with my beliefs that the world just is the way it is, and there isn't some divine hand reaching out to decide my fate, that all of this is due to chance and not due to either a cruel deity if things end up poorly or a benevolent deity if things work out well.

Thanks for keeping up with me. I've got plenty of time to just think about my situation, so I don't mind sharing if people want to hear it.  In fact, I think I'll post this on my blog as well, because I'm guessing my friends and family will be interested in reading this stuff as well.  In case I haven't mentioned it in a while, my blog is at http://livingwithcarmichael.blogspot.com ... I'd change the title now that I'm living with "Allistair" instead, but I'd prefer for people to still be able to find my blog.

Living with Allistair

Wow, a lot of stuff happened pretty quickly.  I'm kind of loopy at the moment thanks to some Benadryl, but I'm going to try to write a quick post to summarize the past few days.

Thursday I came in to the UMGCC for a regular checkup to make sure my blood was responding correctly to the Gleevec.  It turns out that it wasn't.  The doctor noticed that my white blood cells were more numerous than they should have been, and a few tests later revealed that my CML has advanced to ALL -- hence the title of this post.  Carmichael was a lot more fun than Allistair, because it sounded so very treatable and everything.  Allistair, on the other hand, is going to require some serious chemo, followed by a bone marrow transplant.

The next day I was admitted to the hopsital, which is where I am now and where I'll be for the next four weeks.  That means that I'll be missing Christmas, New Years, and of course Sigcomm.  As much as I enjoy all three of those events each year, I understand that my health is more important so I don't mind getting that in order instead.

My mom is taking it very hard, probably harder than I am.  Every once in a while I have some pretty sad thoughts, but I find that if I try to put myself in Buffy's shoes, I feel stronger and more confident that I have the wherewithal to see this through. The one line of thought that really gets to me is when I start thinking about Ted, and how I wish that I had had the chance to marry him, and that I worry so much about how hard he might take it if I were to die. But Ted is strong too, and I know he'll make it even if things don't work out.  That being said, I'm Buffy, so I'm going to fight tooth and nail to make it through this safely. One advantage I have now is that this is a more permanent solution; if this treatment plan works, I could be cured, and that would be a nice feeling.  It's going to take some time to get there, but it will be worth it.

Currently, I've just started on the serious chemo.  This particular bit of chemo is kind of tricky in that it apparently is more likely to cause an allergic reaction than many other kinds.  I seem to be doing well, but as a precaution they gave me a shot of Benadryl which made me really loopy for a while.  I'm coming out of it now, though, and the initial treatment seems to be working, so I think that I'l be able to do just fine with this stuff.

Other than that, there's not much to say at this point.  They added something called a "pick line", which is basically like a semi-permanent IV that they can use to give me IV drugs and to draw blood without sticking me each time.

Installing the thing was quite the experience.  The nurse used an ultrasound machine to find one of the central veins in my arm.  After poking around in one spot for a little while, she tried a different spot and then had no trouble.  In the original spot, I had a hematoma, but that seems to have disappeared and now things are getting back to normal.  This line actually consists of a 41 inch catheter that deposits the IV fluids very near the heart; it goes in my arm and feeds all the way in to my chest.  It's pretty weird, but pretty cool, too!

Anyway, food is here. Wish me luck on the rest of my stay here in UMGCC.  I'm in room 51 on floor 9, if anyone wants to stop by to visit!

Having trouble

Lately I've been having side effects.  Some are just physical, so they're not too bad. However, others are mental, and they're beginning to worry me.  I'll explain.

The physical side effects pretty much started on Sunday when, after a bit of dehydration caused by the disruption of Thanksgiving, I got gout again. It wasn't quite as bad as last time, but it was in the other foot.  I also didn't have any allopurinol, a problem I have since remedied, since it is supposed to help with the gout. I drank a lot of water to clear the gout up, perhaps too much at once, which nearly led me to throw up after taking my Gleevec with lunch. Fortunately I was also given nausea medicine, which helped me keep it down.

The gout naturally cleared up during my sleep, but the following day and today as well I was left with lingering joint pain in my left elbow, in the bottom of both of my knees, in my ankles, and of course my toes. Oddly, the hardest thing for me right now is to walk down stairs; it really hurts my right leg whenever I have to bend my foot too far.  I'm hoping it feels better soon, because I want to be able to get back to the gym.  This stuff always feels better after I work out.

Finally, on the physical side (though not really side effect related), last night was the end of Movember.  Before shaving, I tried to dye my mo a nice bright blue.  It almost worked, too, except I was a bit careless and it started to dye my skin, too.  Frantically I scrubbed it all off and immediately shaved my mo.  Unfortunately, I had to scrub really hard, and now have several torn pimples and what looks like rug burn on my chin.  At least the dye is gone.

So basically, these physical impediments are distracting, but manageable.  Right now, I am far more concerned with the mental effects.

I've been noticing them for a while actually --- pre-diagnosis, even, though things have gotten far worse since the diagnosis (which could be coincident with Gleevec, my changing attitude towards life, or any number of other factors). It's really hard to put my finger on what I'm feeling right now, but I will try.  I have to try.  I'll start from the beginning.

I was smart.  I was really smart.  I always tried to be humble about it, recognizing that it was just a coincidence that I had a better natural capacity for learning, reasoning, and problem solving than most. But really I enjoyed being smart, and it was the single biggest motivation for continuing my studies in grad school.  As long as I had this ability, it would be a waste not to use it in the pursuit of knowledge. That was my purpose in life. Admittedly, as an existentialist, the pursuit of knowledge didn't have any more intrinsic meaning than anything else, but it's what I chose to value above everything else.

After meandering for several years through grad school trying to catch up to everyone else who had already figured out how the research world works, it finally clicked with me about two years ago. Not long after that, I started to have significant success, culminating with Persona in Sigcomm this year. As much as I want to take credit for that, though, Bender deserves a lot of credit for that paper too, and really Bobby and Neil deserve the most. Without them, the paper would have been a mess.  It's hard to write coherently when your thoughts are a mess.

About a year and a half ago, I noticed my coherence slipping.  It was subtle though, for a very long time.  I was able to function, and I readily associated my deteriorating ability with the nature of research; when you don't exercise your knowledge, it's easy to forget it, and research is typically about a lot more than just programming.  During the summer, as I got closer and closer to needing to present Persona, I got very agitated and terrified, because I felt like a fraud.  I was hanging on by a thread, completely unsure of myself most of the time.  Fortunately, I do still have my lucid moments, and I think stress can trigger them, so I think that I was able to pull off the presentation fairly well. But in reality, something was wrong, and I knew it; I just didn't know what to do about it. I don't know if Neil would even remember this, or even if I made myself clear to him at the time, but I tried to confide in him how I'm feeling.  I don't think either of us could have predicted what was to come.

Now I know what has been wrong with me all this time, and I'm finally putting pieces together.  I don't know exactly what's wrong --- I mean, I don't know the mechanism by which this is happening --- but certain evidence has made my condition clear.  I will try to explain the signs I've observed, along with the possible causes I can identify, an what I intend to do about it.

Lately my research has consisted of three tasks.  The first is, well, research: reading existing work to understand the context in which I'm working and to understand the problems that have and haven't been solved already. The second is vision: identifying a problem and sketching a rough solution, which some would say is the hardest part of research, though I would say it's the easiest. The third is execution: actually nailing down the details of the solution, putting forth the effort to engineer everything and validating the solution.

Vision I can handle.  Thinking abstractly in broad terms is not actually that hard for me at the moment, I think because it's more about brainstorming and just coming up with ideas. On the other hand, researching related work and actually executing the details of a solution both require structure; to both understand and generate a technical solution, you need to closely follow the underlying reasoning to that solution, from one step to next, in a rigid order. It has become obvious to me that my capacity to do this is significantly diminished. It takes me an entire day --- sometimes longer --- to read a technical paper (although I was able to knock out The Gathering Storm fairly quickly, so light reading is still on the menu). Today really hit home, when I seriously tried to tackle a program for the first time since my diagnosis.  I can still do it, but it takes me a very long time to do even the simplest of tasks. I used to be able to keep the majority of a program in my head, to see the connections between variables, functions, structures, classes, etc., but now I can barely remember the variables in the scope of a single function once I look away from them.  I just don't know what to do.  My ability to do my job is slipping away.

There are a few ways to explain this.  The first is that I'm distracted.  My physical pain is sometimes hard to ignore, and those distractions can disrupt my thought process. Once my train of thought is derailed, it's easy to start surfing the Internet or do something else unproductive instead of focusing on what I'm doing. But I've noticed that my behavior when surfing the Internet is changing too!  I will check the same sites over and over, expecting new content even though I know there will be nothing there.  I will read the same news story 3 or 4 times, expecting there to be something new that I missed before.  I was not like this before, and I don't know why it's happening.

So, while I'd like to just chalk this up to distraction, I think that the distraction is just another side effect. Others claim that Gleevec can create a kind of fog, which I can attest to.  Some examples: I was certain I ordered a #6 at Roy Rogers the other day but Ted and my mom agreed with the cashier that I asked for a #2, I often completely miss something Ted says and require that he repeat it 3 or 4 times before it actually sticks with me (especially when playing a video game, which seems to be the one thing I can still focus on), and one day I was talking to Neil about Sigcomm, and I just completely lost myself in the middle of a sentence, having no idea what I said before or what I was going to say next.  It's been a real challenge, and when I get confused like that there's no covering it up.  I don't want my performance to suffer, but I don't think it's in my control anymore unfortunately.  I can only do my best, and my best may not be good enough anymore.

Mostly, I'd like to clarify what these people mean by a Gleevec "fog".  My thoughts used to have connections and structure.  I firmly believe that some of the connections in my brain behave like common computer science structures as a tree, or a graph, or a linked list, or a hash map; because of this structure it is easy to think logically, to follow arguments, and to see patterns.  One of the most insightful things my father has ever said was that it makes sense that I like computers because I think like one.  I don't even know if he realizes how much of a compliment that was in my mind; for all I know he might have meant it as an insult! Maybe I do still think like a computer, but right now I feel as if someone just randomly reassigned all of my pointers, and I'm getting segmentation faults everywhere.

So is it because of Gleevec?  Did my super-thick blood do permanent damage to my brain while I was stuffed to the brim with white blood cells?  I don't know.  I'm a scientist, but I'm not a doctor.  But what does it mean?

I always thought I would stay in research, probably in the realm of academia.  Now I'm just not so sure.  How can I go on to academia if I'll continue to suffer from this debilitating impairment to my thought process?  And if I don't go on to do more research, what more will I do?  It's what I'm best at, and I'm not really qualified for anything else that I would consider interesting or significant. And if I don't go into academia, it will be a huge disappointment, both to Bobby and to myself.  I just don't see it happening.  What can I do?  Something has to change.  Would I be content with just raising children while Ted worked?  Would Ted be content with that? Could I actually handle raising children, or would I be forgetful and neglectful with them, too?  I'm distracted with so many questions, and I just don't have the answers.

I'll just have to think about it some more.  Here's hoping I can.

Post-Thanksgiving

I thought about mentioning how much I dislike a few of the members of my extended family in my last entry, but it sounded a little harsh in my head so I ended up deleting it.  Then Thanksgiving happened. I was going to say that they're racist bigots, and now I can share very specific examples from this trip.  Keep in mind, in particular, that this was Ted's first time meeting these people, so he was effectively a stranger to him, he was my guest, and yet they still acted this way in front of him.

First, my cousin Andy uses the n-word.  A lot.  Not only does he use it, but he uses it excessively and casually.  It makes me ashamed to be related to him, and I indicate my disapproval (and discomfort) every time he says it, but that doesn't stop him at all.

As terrible as that is, my cousin Todd somehow managed to top it, perhaps not in vulgarity but at least in rudeness. At first, in front of everyone, he used the word "gay" to mean "bad".  I knew things would not go well after that, and I can't believe he would be that rude to Ted, but I guess it just means that he doesn't think about the words he uses.

The real trouble came when we went to bed.  You see, we had Thanksgiving in Todd's house this year.  It's a really nice place; Todd and his wife got a deal on what's practically a mansion (albeit in the middle of nowhere) thanks to the economy, so there was plenty of room for everyone.  When we took a tour of the house, Todd made sure to tell everyone else where they could sleep, but he never told me and Ted.  I figured I'd just ask later. I was a little nervous, because I had spoken to my mom on the phone the previous night and she said that she thought Todd might be uncomfortable with me and Ted sleeping in the same room.  I assumed she was just expecting the worst, but after I asked where we could sleep, it became apparent that Todd had actually told her that in advance.

Absolutely humiliating.  Todd got this embarrassed look on his face and said that I could sleep in one room and Ted could sleep in another. I didn't tell Ted what my mom had said, so this took him completely by surprise, and so he just asked why we weren't both just sleeping in the one empty room.  Todd said that he wouldn't be okay with it, and then said that he didn't even let his brother, Tevin, "do that", which, since I know Tevin isn't gay, I can only take to mean sleep in the same room out of wedlock? Of course, he and I both know that Ted and I can't get married (yet), but I'm sure that wouldn't change a thing.

I was quite upset that I put Ted in that situation, but I know he can handle it.  The thing that actually upsets me the most was Todd's attitude.  He was visibly ashamed that he was telling us to go to different rooms.  He could clearly tell that what he was doing was nonsense, rude, and immoral.  His "faith" has blinded him from thinking for himself.

Well, like a decent guest I obeyed the rules of Todd's house. I didn't even make a scene even though I felt entitled to do so. Instead, I just decided to never spend Thanksgiving with those people again. I don't mind them showing up at my parents' house, or my brother's house, but I really don't feel the need to go to one of their houses for Thanksgiving ever again if that's how they'll treat me. They don't consider Ted to be part of the family, but I guess that's not too surprising since they don't really consider me to be part of the family either.

And people wonder why Thanksgiving is my least favorite holiday...