IM: WHUSDJ
CURRENT SHOW
As the Polka Turns
Cody Lee is a WHUS family member who was recently diagnosed with Non-Hodgekins Lymphoma. He has decided to keep everyone up-to-date with his experience by occasional postings on WHUS.org. Cody joined WHUS in the summer of 2010 and is currently a sophomore at UConn. If you'd like to get in touch with him, you can email him here. Follow Cody's posts here.
2/8/11
I’m currently writing this at 4 am, since my energy comes and goes with no real pattern. Sometimes I’ll sleep 6 hours and still be tired, and sometimes I’ll wake up in the middle of the night with a ton of energy. Yesterday I got some blood work done, and my white count has become “critical high”, which is really funny because it was “critical low” less than a week ago. They told me I could do pretty much whatever today, before going back in tomorrow for more chemo. But then, I got home and got a call to tell me my potassium levels are low and I had to cancel everything for today so I can go get pumped full of fluids. I did get to see Rob the other day though, so that helped. For those who listened to my show this summer, you might remember Rob as my friend who was willing to go on air at 2 in the morning and do news with me. I’m also started feeling the Neupogen, which is a shot I was getting daily to bring up my white count. One of the side effects makes my skin so sensitive that it actually hurts to lay down, which is honestly one of the most interested sensations I’ve ever experienced. Luckily, the pain is pretty manageable, and doesn’t really compare to the way the tumor in my liver felt. But I don’t want anyone to worry, most days are good days with very little pain, and even the bad days are tolerable. It also helps that I now have more time to play guitar (not enough energy for drums though), which keeps me occupied.
2/10/11
I’m back in the hospital now for more chemo. I should be in for a week this time if everything goes well. I keep my computer and guitar with me, so the boredom has become manageable and I hardly notice that I’m stuck in one room all day anymore. I planned ahead this time and brought plenty of snacks since the steroids I’m on make me hungry all the time, and three meals doesn’t cut it. The only real complaint I have is that the air here is incredibly dry which hurts my eyes a bit. But it sure as hell beats the liver pain I had, so I really have no reason to bitch about it. I still have a single room here, so my habits of staying up all night don’t bother anyone. I even have my own shower now. If I could have a mini fridge and a microwave, I would never need to leave the room. Tomorrow they start monitoring my brain function, since the new chemo I’m starting can cause issues there. But they assured me, with my age, intelligence, and mental activity level, I should have little to no trouble. They also told me that when I get the spinal tap tomorrow, I can have an anti-anxiety medication. It’s not that I have anxiety about it, this will be my third spinal tap and I didn’t really care about it then. I’ve never been afraid of needles, due to the fact that my mother had to learn to draw blood, and I had excellent veins so I let her practice on me when I was very young. Anyway, the point is, they hit a nerve last time and I can only describe the feeling as extremely hot barbed wire wrapped around my leg and pulled extremely tight. It only lasted a second, but I’d rather be under the influence of something if this happens again.
So long story short; I’m feeling okay and everything is going better than expected.
Supplemental log: 2/10/11-
Like I said in my “Cancer: Week 1” post, I have good days and bad days, and my scatter-brained writing becomes even more scatter-brained on the bad days. So I’m currently going through and listing the things I’ve missed.
-While I don’t have the exact measurements of the tumor on my liver with me, I can tell you it was about the size of a billiard ball when I was first diagnosed.
-I have a story from the night before I started chemo that I can’t believe I forgot the post, but given the circumstances, I can see why I didn’t feel like writing at the time. Anyway, as I said I would have intermittent pain from my liver that resembled gallbladder attacks. On that particular night, I had the worst attack of them all. I was spending the evening at home with my family, watching movies, hoping to enjoy myself a bit more before I got put into the hospital. I was feeling pretty good that night and was in a great mood, I even felt well enough to walk around and eat. At one point though, I got up to get a drink, and immediately fell back down. From my waist up, I felt like balloons were swelling inside me, combined with a stabbing feeling on every inch of my torso. I’m aware that if these two things were really happening at the same time, the knives would pop the balloons, but it’s a loose analogy so bite me. To top it off, all my muscles instantly tightened from the pain. The doctors had given me a prescription for extremely strong pain pills, and I immediately took the maximum allowed dose. They took almost an hour to do anything at all, and even then they just made me drowsy and did nothing to the pain, which was the worst pain I have ever experienced. Luckily, it is also likely to be the worst pain I ever will experience and it’s all downhill from here for life. This information was provided to me by my grandmother who was an ER nurse in a major city for quite some time. She’s seen just about every injury out there and says I’m not likely to deal with something that bad again. On the bright side, all other pain I’ve had since seems negligible by comparison, so it all works out. Anyway, I finally got drowsy enough to sleep through the pain, and I think it would have been almost entirely gone by the morning if not for my cat deciding, for the first time in his life, that he liked me. I awoke to this cat, jumping with all his weight, directly over my liver. I wouldn’t consider Jake to be a heavy cat, but that morning he felt like a bag of (insert cliché heavy thing here)s being dropped on me, bringing with it, about half of the pain from the night before. I’m proud to say that I did not bring harm to Jake (So don’t get any funny ideas PETA!), and removed him gently. Afterwards, I got to the hospital, and the pain faded on its own. This was the last time I would have this pain to date as my tumors seem to have shrunk.
-I forgot to post the other day that I got to go out to lunch on the 7th of February. The reason this is worth noting, is that I actually became excited to use a public bathroom. My white count was “critical high”, and for the first time in a long time, I was allowed to go somewhere. I was ecstatic to be healthy enough to go into one of the most notoriously filthy places without fear of infection.
-This next part is also advice for anyone who feels helpless as a loved one goes through what I’m going through, especially if that person is an atheist. I have made it clear to many people that I don’t like it when anyone says they’re praying for me. I try to be polite and just thank them, and just vent to my parents, who are also atheist. They say that people feel a desperate need to be there for me, and prayer lets them feel like they’re doing something. So I decided to contemplate what could be done that would actually do me some good. I decided to think of something that would cost nothing, and take about the same amount of time and effort as prayer. It was around this time, that I got a letter from someone I never met, but who went to high school with my mom. I often get letters and messages from people in the mail and online. I don’t always feel up to reading them right away, but on good days, I’ll go through the pile to help pass the time and boost my mood. So I realized, prayers and letters both consist of nothing but words, and in the time it takes to talk to an invisible man in the sky asking him to do something medical professionals are already doing, you could type up a message in just as many words. I’m not asking people to go out of their way to amuse me, I can get by on my own and I have everything I need. But if you feel compelled to do something for anyone in this situation and you feel like there is nothing you can do, remember that a positive attitude is the best thing a cancer patient can have, and that a single email, facebook message, or letter can do a lot for someone who’s been stuck in a hospital for several days. I’ll be posting a full blog expanding on this topic very soon, but this is not the place for such a large post and this week’s journal entry has gone on long enough.