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.