So here we are again. I'm a little more than six weeks out of work and struggling to get through most days. Each day is a battle with physical pain, fatigue, emotional stress, and other various demons. It's awful. Believe it or not, February 11 was actually the one year anniversary of my stem cell transplant. That was more than a month ago, but that's not even the point. It's been more than an effing YEAR and I'm still dealing with all of this! That's not what the plan was! I've had my struggle. I've paid my dues. Damn it, I've been paying my dues for years! Isn't it time that I get to move on with my life! Isn't it time that I get to live without having to worry what the lab results dictate I can do? Hasn't my wife earned a life where she doesn't have to temper what she wants to do and where she wants to go in the fire of my affliction? Isn't it our time now. We did the sick thing. Been there. Bought the t-shirt, sent out the postcard. It's time to come home and begin living.
Living. I've really learned the meaning of that word over the past few years. What living is worth and what it's not worth. After being so close to death so many times (even recently... we'll get to it) , you really learn how true the cliches are. You find out who your real friends are. You find out what's important to you. You widdle life down to its bare essentials and prioritize. You make the most of what you can with you can. Time becomes something completely different. Time becomes a precious commodity like no other. Maybe one day, hopefully 25 years from now when I'm well beyond this trying to raise 2 healthy Yankees fans I'll become complacent about what I am going through now, but right now. Right now as I'm in the middle of it, it's beyond anything I could express to you or to even comprehend myself. So why bother, right?
Time. I feel it slipping away each day. Each day that I spend locked up in this apartment not advancing my life to the goals I set after I got out of the hospital. I feel the substance of my life slipping away with each visit from my physical therapist as he tries to explain to me the long process this might be. I see the wretch I have become in the mirror hiding behind a beard from the weight gain that I blame on medication and steroids but is really from my lack of self control and food just being damn delicious. I feel the goals I had set forth for myself after getting back to work slowly falling from my grasp with each doctor's visit that my oncologist tells me that I need this treatment or that treatment and that I can't return to work because my body will just break down again in the future. All of these shenanigans are costing me the one currency I can't make any more of no matter how hard I try... Time. I need TIME.
Thanks to the glory of Facebook, I see the lives of everyone I've ever glanced at awkwardly in a hallway at the mall when I was 7 and I see them living and I'm overcome with jealousy. Even simple things that I can't do. Do you know that my wife and I haven't even been on our honeymoon yet? Is that fair to her? Is it? It's ridiculous is what it is. How could she signed up for this knowing what she knows now? I see the pictures of other people and I'm.. I'm just so jealous... We should be doing some of that fun stuff. I'm not saying that Anita and I would be jetsetting every weekend, but for fuck's sake we couldn't go for a walk yesteday because after a tenth of a mile, she had to help me back to the apartment up the steps because my legs hurt so much. CAN I GO ON A WALK WITH MY PRETTY WIFE?!?! CAN I HAVE THAT!
Ok, I'll stop with that now and get to the meat and potatoes of what's wrong this time. The evil demon GVHD or Graft VS Host Disease to you doctors out there. Pretty standard story. Pretty standard story for me, at least.
At the end of January, I was having some problems that I didn't think were so bad, but I called the doctor anyway (I hate calling the doctor because their answer is always to side with caution and come in to the hospital... I obviously hate hospitals). In the back of my mind, I was nervous. I never shared this with anyone, but I was afraid the difficulties I was having might be related to the fact that I was being weened off of the antirejection medication and letting my body fend for itself more and more. This is what I wanted. I was taking aboutu 12 pills every day just to stay upright. I know to a lot of pill poppers that sounds like Disneyland on cocaine, but for me just trying to go to work and put his life together, it was monotinous and terrible. I thought a little discomfort at first was fine. I mean, my life had turned into just a string of discomfort here or there, I just had to learn to get used to it. I figure dI could get some pills to mitigate these symptoms until they subsided. Easy peasy, japanesy.
Of course not! When could it ever be that easy for me? What was I thinking. I had received the medication on Thursday night from my doctor and started taking it on a Friday. By Wednesday, I was actually WORSE off than I started. Yeah. So? It's off to be admitted to the hospital we go. They don't know exactly what was causing the symptoms, but 3 days of IV steroids and they served me up nice and good. Friday night, I was home free. Or so one would thing.
Saturday night, I'm sitting in our living room minding my own business watching television with my wife and probably thinking about how damn lucky I am to have her in my life. Because I am. Damn lucky. Anyway, out of nowhere, I feel pain in my abdomen. I exclaim, "Hey! Something's wrong!" This is mostly ignored by Anita because I'm always having some sort of sharp pain somewhere and they always go away. She couldn't have known how much worse I felt, I didn't elaborate... Or at least.. I didn't have time to. As soon as I made my exclamation, I doubled over the end of the couch writhing in pain. I took what wit I had left and jolted to the bathroom. The groundswell of pain in my abdomen was so great that it caused me to vomit.
At this point, Anita got the hint that this might not be some normal bout of pain that I was whining about. Anita dutifuly rushes to the bathroom to assess the situation. She dials the doctor's paging service and leaves a message. While this is happening, the pain in my abdomen increase 1000 fold. I couldn't contain ir anymore, I was yelping out in pain quite loudly. In the five minutes that passes, it's obvious that we have to head to the hospital. The doctor on the other end of the phone can hear me crying out in pain and without Anita having to explain it to her, she says that she will let the ER know that we are on our way.
The car ride from Plainsboro to Philadelphia was the worst ride of my (and probably Anita's) life. I was SCREAMING in pain the entire way. Just screaming. It was more pain than I'd felt all at once since waking up from the splenectomy. And there was no way to stop it. Before we left, I'd already taken a TRIPLE DOSE of my pain killer. I never dared to even double the dose because my pain killers are so powerful. Here I am sitting at 3X and nothing to even ease the onslught in my abdomen. I force Anita to stop several times on the highway just because I need to stand upright. I actually needed to squirm. She keeps trying to convine me that it's just better if we pushed on. At the time, I think I took it as an insult. Did she really think I wanted to delay the time to the hospital? THAT'S HOW MUCH PAIN I WAS IN! I actually wanted to stop and have it take longer.
After what felt like forever and a day (but was probably closer to an hour), we were there. In the ER at UPENN. People were trying to ask me questions, but all I could do was yelp in pain. I don't know how I got through that triage interview. They took mercy on me and sent me immediately to the back without having to wait. They saw how much pain I was in. Keeping me in the waiting room would just make the natives restless.
I'm in one of the ER rooms and I'm a complete dick to the nurse. I don't remember why I was, but I was in SO MUCH PAIN and the stupid nurse was being kind of short with me. I apologized a thousand times for my tone, and I explained that I'm trying to answer her questions, but I'm in an excruciating amount of pain. But she was still cross with me and I let her have it. There's no reason to be a jerk to me in that situation. I was honestly trying to be calm and collected. They must have pumped me full of ANOTHER 4 or 6 mg of IV dialaudid and that at leat pushed me to a place where I could speak rationally. The apologized to the new nurse before me for what I had said to the previous nurse and she told me not to worry about it and that she'd probably heard a lot worse from people afflicted a lot less. A little reassuring, but still.. I felt bad. These people are trying to help me.
After a gazilion tests and once I was stabilized, the guessing game started and 6 weeks later here I am. What happened? Well, while the doctors were trying to ween me off of the antirejection medication to see if my body could fend for itself, they underestimated what my body was capable of doing. The toll of me trying to live my life was too great and my immune system was much more fragile than they had hoped. So what happened? That wonderful GVHD had wondered itself into my intestines (the worst place you can get it) and started to cause chaos. That pain I was feeling was my bowels being partially obstructed. I was told I was (yet again) lucky that I hadn't had a complete bowel obstruction or a tear or else... This might not be me writing this story. It makes me feel lucky to be in this position, but it also makes me question exactly how many lives do I have here? I feel like I've come up with at least 5 thus far. I'm not a cat.
So, I was hospitalized for another week and it was decided that I needed my immune system to be built up before I can resume life/work and that the most important thing I can do for myself right now is to rest and allow the medication to do its thing and to allow my own immune system to strengthen. Of course, at every subsequent meeting with my doctor, I've asked if I can return to work. I don't have the TIME for this. Apparently, he disagrees. Either that or he doesn't care about my plans. I don't argue with him because... Well... I mean.. He did save my life. I guess I have to give THAT to him, right?
I'm back in full force on the antirejection medication. Shaky hands and everything. I'm on 3 different types of steroids. Remember at the beginning of this post when I complained about having to take about 12 pills a day? Well, bring that up to about 24. 24 pills a day just to stand up in the morning. Is it even worth it? I've been trying to make the best of it, but it's difficult to see the bright side of anything at this point. It's difficult to put a silver lining on the darkness.
I can't really talk to anyone because I'm sure everyone is tired of hearing me whine about how tired I am. I try to make plans to have people come visit me or have short visits places so I don't feel so isolated, but of the 5 that I planned, 3 fell through at the last minute. Two of them because of sickness has held me back. But what can I do? Each day I mark the time and march on. I keep going because I don't have a choice otherwise. I march on in hopes that my next lab report will hold something different. I mark time until I have something better to record. 4:45am. Mark.
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