Life of a Young OG

Last week was heaven compared to how I feel today. I wish I took more advantage of it.

About five days ago is when this monstrosity started. Before that, yes I was pretty uncomfortable with everything I listed in the last post, but I had no idea all of that would compound and attack me even harder.

The mucositis is at the point where I can no longer eat anything significant. Not only is the first layer of skin from inside my mouth is completely gone, but there's a poison-like taste that's always present. The worst part though is my throat, I can't swallow anything at all. It feels like I'm swallowing glass even when just a little bit of my own saliva trickles down. You don't realize how much you use the swallowing mechanism until you're in a condition like this, because I have to now get up every minutes and spit out my own saliva, because that's the only painless way to get rid of it. I tried eating small things and what I have to do is chew everything down to a mushy level and then let small amounts trickle down slowly. Anything too big and it feels like my throat is trying to eat itself. I have ulcers from my mouth all the way to the other end of the GI tract and usually not enough platelet blood cells to prevent bleeding from happening. Every time I spit, a little bit of blood comes out. My nose gets very dry, because the air in the rooms is so filtered out that there's basically no humidity. The first layer of skin in my nose is also gone, leading to little clumps of dried up blood always being in there.  During the middle of the night one night, my nose was so clogged with dried up blood that I could barely get air through, so I got up and did the worst thing you can do in this situation, which is to blow your nose. It took hours and a platelet transfusion to stop the bleeding. I get platelets every single night now, because my body is basically not producing any and their lifespan is about 6-8 hours. So they put them in and then they die within like a day leading us to repeat the whole thing over, which means transfusions during the night and no sleep as they have to take your vitals every 15 minutes when receiving blood products.

Not being able to eat for the last few days has been devastating. I got up to walk today and realized I could barely do it. In order to help the pain, the doctors suggested Morphine (through the IV) to see if it would make any difference in being able to eat. All it did was make me hallucinate and extremely groggy and did nothing to help the pain. They increased the dose the next day and gave me a pump with a remote attached to it so that I could push the button whenever I wanted it and it would infuse 1mg of the pain med. Right around that time, I realized if I start becoming dependent on pain killers, it would actually make me weaker in the long run, because I would just lay in bed all day and not walk at all. Then, the next thing the doctors suggested is replacing Morphine with Dilouded (probably the strongest pain killer) and take a dose before every meal and try to get as much food down as possible. Let me tell you one thing, Dilouded is no joke. It's usually given to gunshot victims, that's the pain standard one has to be in to be able to get it. I could have given myself a dose of it every 10 minutes with the pain pump with the push of one button, leading to a nasty addiction. If wasn't smart enough to realize the consequences of just always being delirious and on narcotics, I would've kept going with the doctors' "solution" and ended up with a serious problem. The whole problem is that the pain is only there when the mechanism of swallowing is engaged and none of these strong narcotics helped with that. Dilouded makes you feel like a zombie for a good while. Imagine it being like a hangover times 100.

On Average, this is what the statistics have been the last few days:

• Daily Caloric Intake: 500
• Daily Caloric Output: 1000
• # of hours spent in bed: 15
• # of hours actually slept: 6
• # of times I leave my room daily: once
• Activity level: check email, maybe watch Friends and shower
• How long it takes to eat one cookie: 1 hour
• # of days here: 18 (feels like 18 years)
• White blood cell count: 0
• Fatigue (on a scale of 1-10): 10. I have never before in my life said 10 for fatigue level. 
• Pain (on a scale of 1-10): 7, only when I swallow. 

The goal is to get out of here in one piece and walk out on my two feet. I refuse to be wheeled out of this place; I've been working too hard to not finish strong. It's not very encouraging when every nurse I have always tells me "it gets worse before it gets better." This is by far the second worst time of my life, but I have the reward at the end on my mind. I have amazing friends who have made great gestures and shown me what my success means to them. Thanks to everyone who attended Aishwarya's performance and helped out with the event. At my worst, I always think about how desperately I want there to be more good memories with the people I'm close to. I have no energy of my own at this point, but every time I reach out to them, I receive the greatest gift that I can possibly get at this point and that is comfort. Comfort in knowing they're just as eager to see me get out of here as my own family and myself.

#thuglife