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My View Five Days Out
Journal entry by Michael March — 2/24/2016

Not everyone has access to Facebook, and I have neglected them for too long, so I wanted to post an update and a status report as to where things stand, not just for them, but for everyone else that is following this process.

I had my first infusion of the clinical treatment drug on February 19, at Johns Hopkins Hospital in Baltimore. There were three appointments that day, and the first was a 13 vial blood pull. I think that is the most blood I have ever given at one time, without it being a surgical procedure, a blood donation, or a punch in the nose.

My doctors mentioned I need a stress free existence during the treatment period and beyond. Stress is not a very welcomed entity while undergoing an already stressful time. I am trying my hardest to keep stress away, at bay and out of my daily life. Sometimes I have to get angrier than I would like, but those around me don't understand I am really okay. At least for now I am okay.

The infusion went fairly well also. Rather quick once the drugs were made and everything put into place. There was a slight delay since they will not compound the medication until they more or less lay their hands on me, since at $40,00 a crack, no need to waste any.

I felt okay that evening, slept most of the way home, and felt a little drained on Saturday, and on Sunday I was totally out of it. I am not sure I even left the sofa in the basement all day. Just laying there, napping and resting up. I was just totally wiped out. I am not sure if it was the infusion, or a combination of having friends over on the day after treatment, or what happened. I was just knocked off of my feet it seems and I am still struggling to regain my footing and energy. This might just be the next step down the path of the new normal.

Here it is five days after the infusion, and I can honestly say, I still lack energy at almost any level. My breathing is a bit worse, but I also might be getting a cold to go with all of this. Funny right? I'm getting a $40,000 per dose infusion of medication to boost my own immune system, and I might be getting a cold. Which we have zero treatment for.

My luck right?

Anyway, that is where things stand right now. Next week we head back to Hopkins for round two. Two weeks after that, we head to Hopkins for two days filled with needles to the tumor inside one lung, to another CT Scan with contrast, and more infusions of the clinical trial medication. Than a slow ride home. I worry about Tammy on those days to be honest. I just sit there and fall asleep and she is left driving home after driving to the hospital. I am so lucky to have a wife like her and I hope she gets a medal for taking care of me one day. Lord knows she deserves it.

Somewhere in all of this, there is a place to unwind, think clearly and decompress. I can only hope I find it sooner than later, and find ways to enjoy everything else around me as the clock slowly ticks away the best days of my life. Month two is coming to a close already and most folks can't wait for warmer weather to get here. I hope it takes forever to be honest. I really hope time slows down a bit more.

M
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