Second Birthday

Well this news is already more than two weeks old, but here it is nonetheless! January 19th marked my one year anniversary (second birthday) of my transplant, and I got a pretty clean bill of health. Some of my blood counts are still a bit low (namely red blood cells, making me rather anemic – stairs still do me in), but that’s to be expected with the pills I’m taking. But otherwise, health is returning. Because of this, the doctors have started cutting my meds. Since two weeks ago, I have completely weaned off prednisone! No more staying up all night (at least not on purpose)! No more random mood swings (and no comments from the peanut gallery)! No more shaky hands and blurry vision (unless I’m really scared and squint a lot)! So that’s exciting. Also, in another month or so, if I’m still doing well, they will start cutting my photo more, and maybe withing 3 to 6 months (hopefully closer to 3) I’ll be done. After that, they’ll take me off prograf, which is the immune suppressant, and once I’m off that I pretty much come off all the other meds I’m taking, as they are all just support antibiotics to fake having an immune system. However right now there are some changes to the medications I take. First I am replacing folic acid with a multi-vitamin, and second I’m coming off Noxafil in three days! Noxafil is that nasty white stuff I have to take with every meal that tastes like acidic bubble gum. So anyhow, that’s all the news that fit to digitally encode. More soon!

Frog Dream

I would like to take this opportunity to transcribe a whacked out dream I had early this morning about frogs. It was very vivid and painful, as well as bizarre, and in my mind, amusing. But enough foreplay, let’s get dreaming!

I was walking through a forested path in autumn, the leaves still on the trees for the most part, and wearing bright reds and golds. There was also a carpet of yellow leaves on the ground. I was walking with a girl who was my sister in the dream, but totally fictional otherwise (Sorry Laura, maybe next time my subconscious will give you the job). I was walking brusquely, to where I don’t know, and the path became crowded with large frogs of green and brown hues. They were almost a foot long each, and sat perfectly still in various positions on the path, but always in profile. However, what was really unique about them was that each had seven legs; two in the front and an extra five in the back making a sort of star shape, the fifth leg sprouting unceremoniously from the frog’s asses. The frogs were large and plentiful and kind of disturbing, so I hurried through them when all of a sudden I felt a clenching pain in my ass crack: one of the frogs had leapt up into my butt and was now pinching me with what I could only imagine were spiked webbed feet (Since this was my dream, whatever I imagined must have been true). I started to run, bowlegged, and pried desperately at the frog keeping my ass hostage. Yet the frog held tight, and I couldn’t pry him loose. My dream sister had disappeared by this point. Finally, after much more struggling, I managed to dislodge the frog from my ass, but now it was stuck to my hand, so my attempts to fling it away were useless. After a minute or so of more running and hand shaking, I grabbed the frogs legs, of which there was now a normal amount, probably because I had forgotten about the extra with all the pressing butt pain, and twanged it away like a slingshot, making sure the limbs had no chance to come in contact with my flesh. After disposing of the offending frog, I realized that my butt still hurt, and that there was still another frog stuck up there. I reached in and pried that one out much the same way I had the first, but when I tried to fling it away in splintered into five or six smaller frogs that shot upward only a few feet from my current position so that I ran smack into their falling, grabbing webbed toes. I did manage to miss about half the frogs, but around three stuck to me and immediately started pinching. I had ripped off one on my arm and was going for another on my leg when a third on my back quickly migrated back to my ass, and set up shop clenching again. I was just about to freak out about what this much smaller frog might be able to do up there when I woke up, realizing that there had been an uncomfortably rough piece of cloth stuck up my butt the whole time.

Cutting all sorts of things (all of them good)

Well hello again folks! Once again I have been a bad blogger and neglected this one for quite some time, so consider this post both my apology and my attempt at rectification. There have been several recent health developments worth mentioning. First of all, my internal organs are looking good, my liver being the one exception, which is still looking a hell of a lot better than it did before, just a tad under a normal person’s (if that normal person hadn’t been drinking heavily for the past 10 years, which is a significant improvement for me!). Since my numbers were looking so sexy (much like a super model with a slight limp), the doctors have cut my prednisone from 20 mg every other day to 10 mg every other day. The less steroids the better, is my motto, so I’m very excited to have this fulfilled in reality. In another few weeks I’ll be up for review again (kind of like getting your PhD, but with less papers and more tests) and if I’m still doing good they will either cut my prednisone down to 5 mg every other day, or eliminate it entirely. In addition, my photophresis schedule has been cut down as well, going from twice every week to twice every two weeks. This has been my first week without photo, or any trip to the clinic for that matter, since May. Once I’m completely off the prednisone, and still doing well, they can start taking down my photo even more to twice every three weeks, to twice a month, and finally to graduation (diploma not included). Then, once I’m off photo, and still doing well, they can start taking me off prograf, the immuno suppressant, and once I start coming off that I also start to come off every other pill I take, as they are all countering drugs for the side effects of prograf (read: not having an immune system). So I’m looking forward to that. Otherwise I feel good, and I have lots of energy. Stairs still kick my ass, leaving me panting like a dog in heat or a transplant patient who just climbed stairs, but it’s getting better.

In other news, I finished day one of NaNoWriMo, or National Novel Writing Month. In this month, participants try to write a full novel (at least 50,000 words) in the month of November (for those of you who don’t remember their nursery songs, that’s 30 days). I have successfully written at least 1,664 words today, as per my goal (50,000 / 30). Check the newly added NaNoWriMo widget in the sidebar for updates, or you can visit my profile here.

Good News!

Good news folks, my health has improved in the decade since my last post! Well, decade is a bit of exaggeration, but it has been a while. I have been out of the hospital for several months now, and have not had to go back in. I have been going to photophoresis outpatient four times a week to get my billirueben under control, and it’s been working. Currently, my billirueben is hovering around 0.8, which is in the normal range (optimal is 0, but I’m not complaining). Also, I have been steadily coming down off the prednisone, from 120mg a day at the start, to 30mg every other day now. I have a doctor’s appointment this coming Wednesday, and if I’m still doing good, they will cut my prednisone even more. Speaking of cutting, as of last week I have been cut back to three photophoresis sessions a week, with a possible cut to two this Wednesday. I have also cut back on prograf, the immune suppressant that prevents against GVHD, and I’ve entirely cut a liver drug, meaning said organ is doing pretty dandy. Finally, pending one final test, I’ve been given the OK to work again! I can only work part time, since I’ll still have to go to photophoresis two or three times a week, but it’s still exciting. I plan on getting my Bergen English Tutor job back until I can work full time, or until something better comes along. Last but not least, I just signed up today for a sketch comedy writing class at the UCB Theatre in New York, which starts September 19th. Oh, and I have hair again. That’s pretty cool.

Jailbreak!

I’m out! Through cunning, misdirection, careful planning, bribes, an elaborate disguise kit, and the permission of my doctor, I was sprang from the hospital this past Wednesday. It kind of looked like this:

So my billirueben is down around the 3s and 4s; it does move around a bit, but the trend it down, and fluctuations are to be expected. I have lost most of my prednisone swelling, although my face is still noticebly jowley. I feel great, albeit anemic, as I am (a combination of the prednisone and the photophoresis – a condition that will aleviate as soon as I’m weened off). I do the photophoresis four times a week in out paitent right now, a process of about four hours, and will continue to do so for the month of June, at which point I will have an assessment and most likely a reduction in visits. With any luck, I will be weened off, or greatly reduced the amount of prednisone I take.

Aside from that, my life has become less restrictive! I am far enough away from transplant that I can go out and do things – obviously being careful, especially around sick folks – and even go out to resturants! (nothing dirty, no salads) I am, however, very sensitive to the sun as a result of the photophoresis treatment, and must wear sunblock, longsleeves, wrap around sunglasses and a hat while outside, in addition to sticking to the shade as much as possible. Yet I find this a perfectly accetable price in exchange for health and freedom. I also have my grandfather’s sweet fedora, a tiger winter hat I got from my sister, and sleek sunglasses, so I feel confident that this new “restriction” is only a cleverly disguised ploy on the part of the universe to make look like a badass.

Waiting

Well, I’ve been in the hospital for two and a half weeks, and my billirueben has been steadily going down. It did go up twice, but then continued to go down. Over the weekend, my doctor switched me to oral steroids, as apposed to the more potent IV steroids for which I was hospitalized to recieve, to see how I did on them. My billirueben did go down, or stayed the same, so that was good. So, yesterday, my doctor told me that if my billiruben went down again today, I’d get to go home. I got my billirueben back today, and it did go down, but only a 10th of a point, which is within the margin of error. All the nurses seem to think I will go home,  but I know my doctor is very concervative about sending people home, as she understandablely doesn’t want them to just have to come right back to the hospital. So now I wait to see the doctor, and see what she says. More updates to come.

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.

Big and Fat

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!

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.

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)