Back like Jordan

I can't believe the state of mind I was in when I wrote that last post...how did I forget everything I've ever learned about life and fall into that weak and pessimistic attitude of someone who's willing to give up? Well, that's what this process does to you. I've been sick as hell before to the point where no one knew if I would ever even walk again, everyone knows that, but I've never been pushed into a hopeless and lethargic condition like the one I've been in recently. I stopped talking to everyone, literally. I didn't even really talk to my siblings or my parents even though they were with me, because I would just try to sleep all day and hope that the time just passes in my deliriousness and that one day the pain just stops. I did this for about 2 weeks during the time where my stomach was all filled with fluid causing episodes of pain every night where I would scream and throw things across the room, because there was just no way to stop it.

I would ask the doctors every day what exactly was wrong and if it would get better and I would never get a straight answer. All they would say is, "yes it does get better for a lot of people and this could be any of the number of complications that transplant patients experience in the second month as your body reacts to the extremely toxic chemo and radiation we have given you, but we can't tell you for sure that it'll get better or how long it'll take." Now, in the past, the treatment has been mentally easier to handle, because the doctors would tell me "you're going to do chemo for x amount of time, then you can go home." There has always been an end state or the end of chemo cycles where I would get breaks before having to go back in. Here, there are no breaks. You go in to the hospital and you stay there for at least more than a month inpatient (definitely a lot longer for me) and then they let you get out with the condition that you stay really close by and come in for a few hours every day to get the necessary drugs, transfusions, etc. I've been doing this for a few days now and the difference in how I feel is tremendous.

The outpatient clinic is called IPOP (Inpatient/Outpatient) which means you go to the hospital every day and you're monitored, but at the end of the day you can go to the local housing next to the hospital which are basically little apartments. This means I have to walk to and from the hospital every day. I could get a wheelchair and it would be a lot easier, but I realize that I need to start being as mobile as possible, because I have lost every ounce of strength I had in my body. I am literally all skin and bones and some swelling with the fluid that's still leftover in my stomach. A few days ago, walking was a lot harder with an extra 10 lbs. of fluid in my belly, but I kept doing it even if it was mostly with a hunch in my back.

A lot has changed in just the last several days actually. The stomach condition has improved a great amount and I no longer take pain killers on a regular basis to get through the nights. How it started improving, I have no idea about that. It slowly started happening and life has become much easier. I still have a lot of other issues like the liver damage that could be considerably serious if in the next couple weeks we don't see improvement in the liver numbers. They will probably end up doing a liver biopsy (pretty risky procedure) to find the actual cause of the problem, but so far they've just been observing the trend. For a while, it was healing and the numbers were coming down, but they started fluctuating again recently. Other than that, my body is pretty much not producing its own blood yet, so I end up getting transfusions on a regular basis. I'm always at risk for bleeding, because I'm always at a critically low level of platelets (the cells that clot blood in your body and stop the bleeding.) It takes about 2 months after the transplant for your body to start producing its own platelets, so in the meantime, all someone would have to do to kill me is hit my head against something really hard or give me a medium size cut and the bleeding would be impossible to stop. Also, every time my nose is runny and I blow it, blood flows out. Every time I brush my teeth, my gums bleed. I find a new bruise somewhere on my body every single day. This is just how it's been since the last two months. My nose used to be clogged with giant blood clots during the first month of the transplant that I would have to pull out in order to be able to breathe. I have never been more freaked out in my life than one night where my left nostril was pretty much closed up and I dug around and pulled out a blood clot the size of a quarter. No joke. I saved it and showed it to the doctors and all they said was, "yeah try not to pull those out, because new clots will form in its place because your body can't heal the wound or control where the blood is going right now." I kept pulling them out anyway because that's the only way I could breathe.

Anyway, apart from the physical problems, I realized I was losing this game mentally. I had to make a comeback. I had panic attacks almost every day all because I felt like the doctors didn't know how to fix what was wrong with my body. They never had anything new to say and I felt worse and worse as each day went on. If you know anything about me, you know that I have an endless amount of patience and mental strength, so for me to start questioning whether I can do this anymore or not, it must have been a pretty much impossible situation to be optimistic in. I had to pretty much slap myself across the face and say what's wrong with you...how can you not know whether you want this any more or not? I sat and talked to my brother that day for 3 hours and caught up on everything he's been doing. Then I thought about my sisters and I have to be there when they graduate and get jobs. How could I be so selfish and want to quit when my parents have literally put everything they have into getting me better for the last two years? I have to be around to take care of them when they need me in old age like they're taking care of me now. I had to go all the way to the basics and think about my family and friends to finally realize I was letting the pain get to me. I thought I needed help to get out of that funk, but then after remembering what has made my life amazing so far, I knew I was back in the game. I just had to turn that switch back on.

Yes, the steaks are much higher and this process has pushed me beyond exhaustion, but that just means I need to become more ruthless. You don't become a legend complaining about your circumstances and misfortunes; you push them out of your mind even if your body is in pain and trust your own ability to just make it to the next day. That's the basic strategy in this game: one day at a time, just get to the next day. Today, I have no doubt that over time my body is going to heal; I'm giving it no choice but to get better. I didn't come this far to lose. I know no one else but me has what it takes to come out of something like this and when I do, trust me you will know. It's going to be a long process to get back to even the shape I was in before I relapsed, but being given another chance to live, I will live like there's a fire under my ass every single day. I don't understand how people just sit and waste their 20's doing things they don't like or being unhappy. I now know the secret to life. Once I can physically do the things that I want to do, you better stay out of my way or run with me, because it's time for shit to start going my way. It's time to start succeeding instead of watching everyone else do big things. Enough is enough.

A lot of times I feel like I have accomplished nothing since I graduated. I only worked for a few months before I got tied up with this where everyone else is already in grad school or getting promoted and I have wasted two years of life in hospitals. Then I realized, everyone else has been doing the same thing as each other. How much have they really learned about life working the same job for two years? How many of them can say they came out of a life and death situation twice and in between undid the damage almost completely? I should feel accomplished that by the time I turn 25, I would have not only once, but twice overcome a life-threatening disease. I have the rest of my life to work and do what everyone else does and when I start, my desire to succeed will be deeper than most people in this world. The confidence I have now just cannot be matched.

That's why I feel like the Jordan reference doesn't even do this post justice, because I have to work harder than him. I thought about the saying "only the good die young" for a while until I realized that's definitely not going to be the case here. Why? Because I'd rather be a living legend.

Can I Just Rest in Peace?

I haven't answered my phone, email, texts in weeks now. I've been a sick, sick human being and the reason why I'm able to even write this is because of some serious pain killers. Don't freak out after reading this, this has been my train of thought for weeks now - it's going to be highly angry, paranoid, and somewhat pessimistic due to always being blinded by pain.

About three weeks ago, when the Mucositis (which feels like a joke now) started resolving, something just randomly went wrong with with my liver and kidneys, leading them to fail for a short period of time. This created about 20 lbs. of extra fluid and waste to accumulate in my body. The doctors came in and threw around terms like CMV virus and Vino Occlusive Disease (VOD) and at the time I didn't realize just how serious these complications were going to be. My concern in those days was to see my cells start growing, which thankfully they did as they definitely helped in resolving the CMV virus attack on my body. They gave me a lot of medicine to try to get rid of extra fluid in the body, but for some reason there's about 7-10 lbs. worth of swelling in my abdomen that makes it look like I'm carrying triplets right now. It makes me feel like I've eaten 50 times as much as I normally eat and consuming even drops of water is an impossible task. I haven't eaten in 5 weeks now, I don't know how it's possible for a human being to survive without solid food for so long. Whatever liquids I do manage to put into my stomach, come straight out as diarrhea. Having that much extra fluid weight around the belly makes it feel like there's a stress band tied right below my chest, all the way around that's going to explode even when I'm simply just breathing. Forget about trying to find a way to sleep. No matter which side you sleep on, it's so uncomfortable to bear the weight of my own belly that basically what I have to do is lay on my back and keep my legs bent. All of this is creating intense pressure for my back, leading to rely on painkillers to be able to sleep. During the day, I have to walk around to stay mobile and use the restroom etc., but it's absolutely draining to even these things.

This condition alone has messed up my vitals in all sorts of ways. It makes it harder to breathe as everything is pushing up into my chest. My blood pressure and heart rate are out of the roof most of the time. I always gets fevers too, but there's a whole another set of issues that brings with it.

What are the doctors saying? Nothing. They don't know how to fix this. They've seen it before, and yeah it gets better for some people over time. Will it get better for me? We don't know. That's what I meant before I started this by saying once I go in, I have no idea if I'll even come out of this in one piece...it's usually not the transplant itself that kills people, but serious complications like the ones described above that eventually just do not resolve. I don't know how long I'm gonna be in the hospital. I don't know how long I'm gonna be sane. I've started throwing things across the room, because I have multiple panic attacks every day and I know there's literally nothing I can do to control what's happening in my body. I see other patients reaching day 60 and walking out of here and I think to myself how lucky those people are...I compared myself to a homeless person today and wondered who had a more comfortable life at this point. At least the homeless person can still enjoy and taste food and walk around. I would give anything in this world right now to be able to sit down and just drink a cold glass of water and not worry about how the pain from doing that will almost try to kill me within the next hour. Or how my skin is so dry to the bone that no matter what kind of lotion I put on it, I scratch it all night and being low on blood just makes me bleed underneath the skin by doing that .

Everyone I talk to tells me, "you came out of worse before, you're so strong, just hang in there." You know what, what happened last time was basically a miracle. Am I gonna have two miracles in one lifetime? And I am not strong, I am desperate at this point. I just want to know if all of this is worth it or not. I'm not sure how much longer it is for. Things have only been getting worse recently and I'm losing my mind. I've never been in a darker place than this before psychologically. Yesterday, during a particularly intense panic attack, where I felt like I would never get out of here and I would never be able to get rid of these pains, I even yelled and told my Mom that I didn't want to do this anymore.

Why is it so much harder to handle the pain now? Because I don't know when it's going to end and whatever end there is is only coming by slowly.

I try to think happy thoughts sometimes, but even a dream about a day when I can go home and just be able to sleep in my own bed until the daylight comes in and feel a desire to wake up seems like the phoniest thought to me. It's just too fake and far.