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Archive for May, 2010

I’m Leaving Facebook

Yep, I’m going to do it. Why? Well because I don’t feel comfortable with their privacy policies anymore. When I first joined back in the spring of 2004, facebook had a strict sense of user privacy. Here’s a press release circa 2004,

No personal information that you submit to Thefacebook will be available to any user of the Web Site who does not belong to at least one of the groups specified by you in your privacy settings.

Contrast that to their current policy, as of April 2010,

When you connect with an application or website it will have access to General Information about you. The term General Information includes your and your friends’ names, profile pictures, gender, user IDs, connections, and any content shared using the Everyone privacy setting. … The default privacy setting for certain types of information you post on Facebook is set to “everyone.” … Because it takes two to connect, your privacy settings only control who can see the connection on your profile page. If you are uncomfortable with the connection being publicly available, you should consider removing (or not making) the connection.

If this is how facebook feels, I must then choose to not make the connection. To me, their policies are clearly in service of the corporations they sell my information to; none of these “expanded” privacy policies help me. I do believe one of the primary functions of the internet is sharing, and it is a wonderful tool to do so. However I don’t believe that this sharing should, and, as facebook would have us believe, must come at a sacrifice in privacy.

My interests and opinions are now converted directly into objects suitable only for dataminer’s and advertiser’s consumption. You can read more about this policy in this article.

Now, many may argue that privacy settings can still be set on facebook, and while I respect that opinion, I offer this refutation: first, facebook can change your privacy settings at any time without notice. Not only can they, but they have. Repeatedly. This may seem like a minor inconvience, a simple trip to the settings page, but without notice, data can be open for the period that you were unaware of the change. I know it happened to me. It’s also greatly discomforting to me to be a part of a company that treats me and my data in this way.

I recently did a privacy check of my facebook account with a tool called ReclaimPrivacy. It found most of my settings secure, however friends could still “accidentally” share my information with corperations. I was unable to fix this problem. However, even if my facebook page had come back with a clean bill of health, I would still have quit on principle and for fear of the future: I cannot get behinda company that has such disregard for my privacy, and whose track record suggests a continual “big brother” decline. Conjuring Orwell may seem prosaic, but I cannot help but feel it is deserved.

So that’s my reasoning. Facebook is very convienent and uuseful in many ways, not to mention addicting, however it’s also really evil. There, I said it. If you feel the same way, consider quitting facebook too.

As for alternatives, unfortunately there is nothing directly like facebook to switch to that has the same level of popularity. However, the Diaspora Project looks very promising, and there will be a release at the end of the summer. (Thanks to Jack Donovan for introducing me to it!) Also, there’s always twitter, which is very open about being public, so you know exactly what you’re sharing.

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Today is Wednesday May 26th, the fifth day of my latest stint in the hospital. I’ve been getting the photophoreisis every morning since Monday, and it’s been going well. The procedure itself is pretty boring; the nurse just pops in an IV and you have to lay down for 3 to 4 hours, and not move your right arm much. It’s painless, and I often sleep. From all accounts, the process is effective, however it does work slowly. My billireuben counts have only been going down slightly each day, and today they actually went up, from 6.8 to 7.2. This, apparently, is normal, and just part of the healing process. Also, I have new information to clarify my last post, where I said that the photophoreisis worked “by magic:” this is the common medical opinion. I am serious; doctors have literally no idea why or how it works. They just discovered a bunch of people with skin conditions eating a particular plant near the nile, getting exposed to the sun, and getting better. They then extrapolated those conditions for other uses, but still have no idea how it does what it does. Kind of weird, kind of scary, and kind of cool. You be the judge.

However, the big thing that is really effecting me side effect wise is water weight from the prednisone. As I’ve mentioned before, one of prednisone’s (many) side effects is the catastrophic retention of water, of which I am effected. Unfortunately, I have only gotten bigger, now sporting at least 20 lbs of excess water weight, putting my weight at 145 lbs (my personal record, far and away). Now, many may think, “Chris is a stick! A sickly stick. Stickly, you might say. 145 lbs is a healthy weight.” To which I reply, “Yes, it very well might be, but only if it’s real.” As it stands, lugging around a ton of water in your thighs, stomach, face and feet is highly uncomfortable. It also makes my penis look like Jabba The Hutt, which is scary enough in and of itself, but now everytime I pee I hear him laughing. And on that image I leave you!

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I’m Not Home!

Well I’m going back into the hospital! Turns out the oral prednisone I was taking at home didn’t really work the way the IV drip prednisone did, so my billireuben went up. I was actually supposed be admitted today, but the room is still not ready as of 8:00pm (and probably won’t be until 11:00 or 12:00), so I’m just going to go in first thing tomorrow morning. They will be doing another procedure on top of the prednisone that is apparently very effective called photophoriesis. What will happen is they will hook me up to this machine through an IV, and filter out a small amount of my white blood cells, then put the rest back in me. Then they radiate those white blood cells, pump them back into my body, and then hit them with artificial UV sunlight, seemingly for no logical reason. However, apparently this process reverses GVHD by damaging the T-cells that cause the GVHD, and not the ones that fight it. My only guess on the science of this is that it must be heavily based in voodoo. Anyways, they will start me on this on monday, and continue for 3 or 4 days, depending on how well I respond, at which point I could be discharged. Hopefully I’ll only be in the big house for a week, maybe less. Also, the photophoreisis should help me get off the prednisone quicker. After I’m discharged, I will still need to go to outpaitent for photophoreisis probably at least 3 times a week, and slowly decrease. Chances are I’ll be doing this for at least a month, and I’ll probably still be on some dosage of prednisone after that. So that’s the update for now, other than I had really good indian food today. More when I don’t have to pee as bad.

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I’m Home!

Finally, after a week of siting around in the hospital, and waiting around all day today, I was discharged from the hospital! Thanks to my Aunt Terry for hanging out with me all day and driving me home. Just a quick update:

My liver functions are steadily returning to normal on the prednisone (steroids), and while I’m still under close observations, things are getting better (including my color). There are some side effects; first, this particular steroid weakens muscles, especially in the legs, so I have to do a lot more exercise just to keep them at the level they were. Also, the meds jack up my blood sugar, so currently I am on a diabetic regiment. I do the finger sticks (blood sugar checks) before each meal – I have been averaging about 350 – and then inject myself with insulin (usually10 units). This may seem freaky to some, but the needles are small and really painless, and you feel really badass doing it. My dad was a real big help today and got all my prescriptions, except unfortunately the doctor neglected to write a prescription for one of the meds (a nasty powder stuff), so I’ll have to go get that in the morning. Finally, the prednisone has the side effect of keeping you awake, hence this blog post at 2:00am! I did have sleeping pills in the hospital, but the doctor didn’t write the prescription for that either, so for at least tonight I’ll have to wing it.

Finally, congradulations to my mom on graduating graduate school! She also got the top honor in the psyche department for having the highest GPA (no surprise there). This is all well and good, however it may force me to go to grad school to beat her. Alright, well that’s enough for now. Goodnight! (hopefully)

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Hello everyone! Sorry that it has been so incredibly long since my last post, however in my defense, there wasn’t anything that juicy to report. Now, finally, there’s some drama! For anyone who doesn’t know the circumstances of my medical treatment since my last post, here they are in abbreviated form.

My blood counts continued to go up, although with plenty of hills and valleys, instead of a straight climb. Three weeks ago I had my (hopefully) last bone marrow biopsy, and let me be the first to say, even though it was my fourth, they don’t get any easier. Needless to say I’m glad that’s over with. During the past say five weeks, there have been graft vs host “scares.” Now I say scares in quotes because having a little graft vs host, as mentioned previously in this blog, is a good thing, as my sister’s cells take care of any strangling cancer cells. It also quickly increases the percentage of the cells in my body that are my sisters, a.k.a. mine are getting killed. It seems sibling rivalry can be traced all the way down to the cellular level. These graft vs host (or GVHD) episodes never really amounted to anything, as there wasn’t enough of a presence to even confirm diagnosis, much less administer treatment.

Aside from some stomach discomfort, I was feeling good, and since my blood numbers were good, I was given a pass to start going out more about a week ago. This was roughly 105 days after transplant. My conditions for going out were strict; I had to wear lots of sunblock, avoid sunlight, wash my hands almost constantly, and stay away from large crowds and coughing people in addition to putzes, although in all fairness, that last restriction was self imposed. I used my new found freedom three times during the past week; once to visit my friend Cat at her new apartment on 171st street, once to visit my friends Zach, Beth and Nick at Sarah Lawrence College in Bronxville, and once to visit my family for mother’s day (Thanks for feeding me guys! It was delicious).

This brings us up to the present day, so without further adiue, here’s the news: The good news is that the full test results came back from my bone marrow biopsy, and I am cancer free! There are no cancer cells in my blood or my bone marrow, and my cytogenetics (which measure if there are any of the original mutant chromosomes that caused the leukemia in the first place), and they showed a normal female. Next stop, estrogen central; I’m going to start caring about shoes.

Now the bad news is, that it has finally been confirmed that I do have GVHD of the liver, and I’ve been admitted to the hospital for treatment. There is a giant fight in my liver between my sister and I, so my liver is not functioning well. Essentially it is not processing and eliminating the toxins in my body, of which there is an extensive amount. I am currently such a bright shade of yellow, I could join the cast of The Simpsons. My Billireuben is very high (a bi product of the liver), which is why I need to be admitted for treatment. The treatment process involves steroids (Not the muscle building kind, I asked), which I will probably be on for a month or so total, including both time spent in the hospital and once I’m sent home. The steroids I will be taking – and have actually started taking already – are a much more potent version of Prednisone.

Well, that’s all the news that’s fit to print, other than I also had time to grow a sweet beard, which combined with my bald head, makes me look like a badass.

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