Poka Poka Poka!
Tuesday December 22nd 2009, 4:14 am
Filed under: Leukemia

I got my once-every-three-months intrathecal injection of methotrexate today (the one they inject into my brain and spinal fluid through a port in my head that goes into my brain). I used to feel severe pain during this procedure; often just having the port accessed would bring tears to my eyes, and it only got worse from there. Last time I had an intrathecal infusion, however, somebody suggested I lie down during the procedure. That made all the difference, and for whatever reason (perhaps it was just a matter of being able to stay more still), the procedure didn’t hurt at all when I was horizontal. I obviously opted to do it that way again today and, once again, it was not painful at all. Unfortunately, the methotrexate itself still knocks me on my ass for several days (or longer sometimes).

That turned out to be the easy part/port of the day. Because of course, I’m Reid Levin, bearer of hundreds of medical oddities for which no med school could ever possibly prepare anyone adequately. Every month, I get an infusion of vincristine through the mediport in my chest, which provides a direct line to my heart. The one I have in my chest now was installed over the summer at the same time I was having my gallbladder removed and my RAM upgraded. This new port needed to be extremely easy to use because only a few nurses could access my old one–it moved around in a lot of unpredictable ways (under my skin, mind you). The new one is very big compared to my old one, and therefore provides a bigger target to hit. It was installed sitting flat on my sternum. It was very, very easy to access. All the nurses who had trouble with my old port wanted a chance to access my new one. There was a long line that stretched down the street, made up of people from all over the world who just wanted a shot at accessing my new port. It was really great fun. We were thinking of taking it on tour actually, from city to city, just because of how much fun it was to access it. But that’s when things took a sour turn.

After those initial few weeks of jolly accessing and re-accessing my port by all sorts of neat people (many of whom were probably trained in some sort of medical capacity), my new port migrated away from my heart and turned so that it no longer faced straight outwards. Now the face of the mediport kind of faces 10 o’clock from my perspective. But Lauren, who is very adept at dealing with my weird problems, and who is a zen master when it comes to accessing my ports (both colloquially and literally), got it accessed, got good blood return, and was able to flush it with saline just fine. This normally means everything is working great, all systems checked out and that the flight crew should prepare for take off. However, almost immediately after the very slow push of vincristine started, the skin above my port started to hurt. Which meant the whole thing was shut down immediately because vincristine is toxic if it somehow gets in the body but isn’t in the veins. Neurotoxic, even. I don’t know exactly what that means, but since I obviously don’t want something toxic in my body (this was a lesson my mom told me my first day of kindergarten: 1) don’t talk to strangers, 2) don’t take candy from strangers, 3) don’t put anything toxic in your body), I can only imagine that I really don’t want something that’s neurotoxic having free reign around my body.

After several tests to confirm that my port wasn’t cracked or somehow or another leaking into my body, we finally got all the chemo done, but the problem of my port still remains. We decided it was probably giving me pain because of the awkward way the needle needed to be angled to get into the port, which then pulled the skin in a painful, misaligned way. It’s probably moving around because my body tends to create keloid scars. They’re basically just unnecessarily large and puffy scars. Apparently, my body doesn’t just do that on the outside; it does it on the inside, too.

It was annoying and painful, so we’re trying to brainstorm some solution to this that is at least slightly less annoying.

I guess that’s all for now, mostly because I can hardly read the screen right in front of me. I’m so, so tired but I feel like my on/off switch is stuck in the “on” position (this is common after being methotrexate’d). I can’t seem to fall asleep no matter what I try, and my mouth is so dry. I’m drinking water, but that only helps for a few seconds, and then it seems to get absorbed by the dryness. It feels like I’m trying to flood the Sahara with a garden hose.

Hopefully this haze means I am catching up to sleep and that sleep is catching up to me. I hope this entry is at least vaguely legible. Whaaatever, man.

–Reid.

—————-
Now playing: Annie Little – Fly Me Away
via FoxyTunes


3 Comments so far
Leave a comment

Wow… I’m so sorry your port is giving you so much trouble. (I know it’s not my fault, but I doubt the port will apologize and so I figured I would.) Try and get some rest, and feel better soon.

Comment by Krista Harris 12.23.09 @ 2:10 pm

Why did your comment of people lining up remind me of the movie Airplane!? Were there nuns, jive guys and airline passengers included?

Feel better! I hope you brush your Chittarone off too…there needs to be some balderdashery soon!

Comment by Martin Rottler 12.26.09 @ 12:07 pm

Krista: thank you for the well wishes! I seem to be feeling better.

Martin: the game is afoot, Sir! Consider this an official challenge! Have at you, and whatnot! –Reid, jive guy.

Comment by Reid 12.29.09 @ 12:17 am



Leave a comment
Line and paragraph breaks automatic, e-mail address never displayed, HTML allowed: <a href="" title=""> <abbr title=""> <acronym title=""> <b> <blockquote cite=""> <cite> <code> <del datetime=""> <em> <i> <q cite=""> <s> <strike> <strong>

(required)

(required)