Tuesday, August 28, 2012
A manner of weeks ago I had my ultrasound, which if you haven’t had one is just a weird experience. It’s only painful if your tech forgets that she’s pressing the sensor into your cirrhotic swollen liver, shoving it against your ribcage. Or maybe something similar, like they used cold gel or something. After this lovely stay at the Women’s imaging center I then had my first MRI….which would soon be followed by my second MRI. Apparently I didn’t score so well on the contrast part of the compare/contrast section on the first test, so they let me study for a week (so nice of them) and then I took the test again. The second one was important because it more than made up for the first test, as the contrast went just right. The results of the test would tell me if after this year of hell, I would have plan for the reality of liver cancer.
This would not be a happy result, definitely going to give that a D-, it’s not an F because as long as it’s isolated it’s not a total death sentence.
So flash forward *wooshing sounds* to today. I received a call from my doctor’s office at an unusually reasonable time, and this was the message: “Your MRI results came out clean.” Which means my liver is just scarred and really, really screwed up….but I already knew that, so woohoo! I’m certain with my medical history cancer and I will have our fight someday… but it is not today, and for that I sleep a little easier tonight.
Friday, August 24, 2012
I'm always pleasantly surprised by who ends up reading my blog. :)
So like Veronica Corningstone said:
Thanks for stopping by!
Monday, August 20, 2012
When you first hear the world shattering news that your life has been cut short, it’s strangely freeing. I can’t say it’s freeing in a good way in every sense, it’s more like detachment. There are situations where that detachment comes in handy. For a thirteen year old it’s odd, I didn't have weeks, months, or a year, I had around twenty or so, good years at least. This idea that my life was half the length it should be propelled me to action where otherwise I might sit and do nothing. Simply because I was detached, I acted with reckless abandon not really concerned for consequence. Because at the end of the day no punishment, no consequence would hold a candle to death. On the other side of the coin, the detachment made me feel constantly isolated and alone, no matter the friends I had or what I did. This detachment was only one of the twists that would pull my mind and warp reality.
Another larger factor was time. Time is relative and to me minutes feel like hours, days like weeks, often it’s been a boon, but most of the time it’s simply nothing. Reason being; others do not live on the same time, most people live at a regular pace. In a world where instant communication is the standard this creates confusing messages. While in person I can pace my mind and topics fairly well, without the nonverbal cues in an instant setting, I’m already three tangents ahead. So conversation becomes fragmented, confusing and often I come off a dullard. This compounded that detachment, if only because it built anger and frustration towards those close to me. In time I’ve learned to understand and properly deal with the emotions.
This distortion of time and detachment propelled me to be far less inhibited, so there is truth to the phrase. But the idea of living without regret, to live like you’re dying, to love with passion and honesty, to fight for what you believe in, and do something beyond yourself. It’s great for a movie script, but when you’re ten years into it, and you start to feel like you’re dying the tune starts to carry some unwanted vibrato. People feel sorry for you, and distance themselves from you, a heavy weight built itself around me in this time, and I carry it still.
In my relationships, I fell fast and hard, in my friendships I open myself completely, and will give and do whatever they may need, in my hardships, I’ve fought with tenacity, and failed often, but never would that stop me for long. These ideas sound romantic, but in life, the favor is seldom returned as reciprocity falls short of the ideal. I’ve learned that people will disappoint, and it’s worsened by the eternity of seconds manifested by my mental time distortion. But I’ve also learned to just continue with what I do; regardless, because those who don’t disappoint are amazing. Those intense sometimes, instant relationships are part and parcel to the movie script, so there are elements of “Live like you are dying” within my reality of it. But I feel like this treatment will allow me to shed that movie cliché, and will be more freeing and tie closer to the intent of the phrase than it ever did upon diagnosis.
Friday, August 17, 2012
So i hate my internet connection right now.. #firstworldproblems
It cut me off again, so rude.
In any case, please join in with me if you'd like to take a shot with me on August 31st!
ALSO!!!! GET TESTED!
I like the happy guy at the bottom.
Wednesday, August 15, 2012
My treatment has a handful of different numbers that indicate my progress. Chief among them is my viral load, a terrifying and confusing number.
When I was in High school, my viral load was around three hundred thousand, as I left high school it picked up to around a million. For a frame of reference, a viral load of around the high teens to twenty million means one of the following is imminent: transplant, treatment or death. Although I did know a man who defied the odds at forty four million, he immediately went on treatment because doctors indicated to him, that at those numbers his hepatitis could cause his liver to fail within months.
With that in mind, my first two treatments in early 2008, and late 2009/early 2010 had my numbers near three million. Each test would yield little change between my counts; in fact both times my numbers were slightly higher. I managed to keep my numbers stable until 2011, when I had my episode of esophageal varicies. I was given a MELD score of 13, which would shuffle between 11 and 15 as I completed all of the prep work for a liver transplant prior to treatment. With all of this in play, I still had no clue what my last viral load was since my last treatment. I recently found out I’d shot up to a little above nine million prior to treatment. The blood test I took on Thursday was to track that number.
On this treatment if I don’t zero out(no traceable viral load) during the first three months, I fail and stop treatment. My number at the beginning, was over 9,000,000, my current viral load is 220. I had to listen to the doctor’s message a few times just to make sure she didn’t say “it’s down 220.”
This not only means that the treatment is working, but that I’m going to zero out soon, and within a month I’ll be non-communicable. I won’t be cured just yet, I’ve still got forty five weeks left, but it means for the first time in my life I can look forward past my forties.
Friday, August 10, 2012
SO week five! Only only forty three weeks to go!
As promised I videotaped my injection this week, it’s really not graphic.
Because it’s a video! J in any case I’m in a decent mood, in spite of this new found pressure on my left eye. Is that a dog stepping on my eye? Nope, but it sure feels like it.
My mom was gracious enough to assist in video recording my injection.
Also, Thank you all so much for reading and watching! i got excited to see over two hundred views last week, and now it's coming up to three hundred!
Thank you all for your love and support! :)
Sunday, August 5, 2012
There is something few of you will ever know, and I pray you never feel it yourself. It is when something about you so bothers another person, that when the look at you, they are afraid for their life.
There is a look of fear that I’ve inspired within others since I found out I had HepC. It’s not a pleasant look, and it’s nothing I can control. Some people have it, and others do not. The first time I really came across it was when I was a senior in high school. It was where I’d least expected, in a hospital room, a newer nurse drawing my blood, looked at me with fear in her eyes as she spoke as few words as possible.
I’ve rarely come across the look, and when I do, I explain and educate, but sometimes it is knowledge that’s the problem. At the end of the day, I pose a risk, by choosing to be near me, you risk exposure you otherwise would avoid. While I know, and live with the idea and fear that I may unknowingly infect someone else, albeit transference isn’t exactly easy, it hurts to be actively reminded of this fact.
While I’m aware it’s unintentional, and I know it’s not me they’re afraid of, but rather the virus and the danger it poses. At the end of the day, until I’m through this treatment, it’s a part of me. I take it personally, when I see that look in someone’s eyes, when I hear the ignorance and fear in their words.
I have many acquaintances, whom I’m sure would be good friends if not for the virus. But I’m glad the barrier exists, because at the end of the day I’m left with friends who care no matter the risks.
This post is in a way dedicated to my friends, without whom this treatment would be impossible. I long for the day I can have a drink with all of you, for all that it means.
Friday, August 3, 2012
So unfortunately, you only have the aftermath.
In either case BLAMO Injection number four, putting me in week four of forty eight.
Next week i find out some results, and the week following i find out my viral load, and then i find out what all this shit on my liver means.
lots of new questions...and weeks for answers... but in the mean time, let the anemia kick in.
My level of exhaustion is at a point where exercise can help overcome it a bit, where diet and my attitude still has an effect, so here goes to hoping it stays this way.
Last needle of the box!