Seven weeks out

It’s been near seven weeks since the treatment failed. I've been hearing lots of good news regarding prospective treatments.

While I’m changing up my diet to include more liver healthy foods, I've added supplements to encourage my overall health. And most importantly I’m keeping to a healthy daily exercise schedule.

I've gone through all of this shit to get my numbers down from nine million, I’d like to keep it low in hopes that my liver can do some serious regeneration.

Along that note, the last four weeks have been a unique trial. I suspected there would be lingering symptoms from the treatment but I had no idea that some would worsen.

The other day, when I was drying off from a shower I noticed some long hairs. I assumed that my cat sat on my warm laundry again, and dismissed it. As each day would pass I noticed more and more hair, sometimes even when running my fingers through it. I had recently gotten a haircut, so again I thought little of it. But as the weeks progressed I noticed it wasn't stopping, by four weeks time I’d begun to notice my hair was seriously thinning. To date, the thinning hasn't stopped, in fact I've noticed my hair thinning everywhere. If the trend continues I’ll be completely hairless in a years time. I do not look forward to this, it sounds very cold.

My skin took began to get drier and drier, in patches. The more anything came in contact with my skin the more likely it was to dry up and get brittle. Constant lotion for nearly a month has solved most of that issue, but it was alarming how weak my skin had become.

My vision is still readjusting, my eyes get tired easily and I've become more prone to headaches. I can’t take anything for the pain, if only to ensure my liver has minimal medications to deal with.

The best new thing about my compromised immune system is my inability to process food properly. I am now apparently allergic to spinach. Depending upon the time of day, if I drink milk, eat meat, or even some greens it causes me immense pain. Increased, and random, sensitivity to air particulates that some days at work, I just sit there and wait for it all to stop before I can get back to what I was doing. There have also been…serious colonic distress issues.

Some of it may have been as a direct result of constant food poisoning, but it has a lot to do with my body’s current state, compromised immune system and the medication slowly dissipating.

I’m sure some of you are wondering, constant food poisoning? Yes, the colonic distress has been such an issue that I sought medical advice, and that was their conclusion.

Doc: …Did you eat anything unusual prior to the event?
Me: I had a really good burrito.

Doc: And the second time?

Me: Was also after a burrito….

Doc: ...You may have an issue with your gallbladder... did you eat lunch today?

Me: Yea, around eleven.

Doc: Burrito?

Me: Yeah.

Doc: It’s really a weird coincidence, but maybe you should stay away from burritos.

But on to the good news!

There is a company here in San Diego, which does a very unique dialysis. Currently they perform the operation in India; last I’d heard it was around ten thousand dollars and four weeks long. Doing this would cost me my job and around twenty five thousand out of pocket.  It’s a lot of money, but if it works, it’s worth it. Luckily, I won’t have to risk that much. Recently they've been able to bring the time down to around a week, and they’re looking at replicating operations in the United States soon.

My hope is that they’re operational and FDA approved in the US by the time I can do my treatment.

The dialysis beforehand will not cure me, but it will “cleanse” my blood, making treatment easier. If the dialysis is not FDA approved, I imagine the cost being around twenty thousand for the week. But if improves my odds, It must be done.

The future looks good, however far away that may be. In the meantime it’s about staying healthy, and staying away from burritos.

Better things than angry

As a whole my GI doctors don’t generally like to look at me, if they don’t have good news. The average age of the people they see is in their late forties, and were exposed to HCV by doing something during their lifetime. Whereas I was born, got it, have failed treatment three times and have worse liver damage than many of their late forty year-old patients. So it’s not exactly easy with all of this knowledge to give me anything less than good news.

While I appreciate the consideration of my doctors to constantly reassure me of my resilience, sometimes they’re not always… tactful.

Doc: Normally if a person with your level of cirrhosis were to bleed as often as you have in the last year, they’d die.

Me: Well that’s nice.

Doc: But even with that, you’re still going to need a transplant… You’ll need to without another bleed for a year, and then we can look at a study.

Me: I’ll do my best, Varicies will start bleeding, and I’ll be like ‘Nah man.’

Doc: You have a really optimistic outlook despite this horrible situation you had no control over, If I were to be in this situation I’d probably be really angry all the time.

Me: Yea, well like you said, I’m resilient. It can’t be helped, if I spent all my energy being angry, how would I have any left to get better?

There is also the reality that within a few years I’ll be due for a transplant if I can’t make some headway in the next treatment. It is not a treatment though... it is currently an interferon free study, which has far greater risks than an FDA certified treatment.

It was a rather depressing way to spend forty dollars. But I realized that I don’t fight most things, I allow them to pass, so that I can pour my fight into things I truly care about.

Struggle, because it proves you're still alive.

Sleeping last night was an adventure to say the least. Wrestling with my unrelenting mind I could not find it within my power to fall asleep. A little anxious for the news I would hear today, I kept my thoughts elsewhere. Waking up more exhausted than when I went to sleep I drudged through the day, every spare moment my eyes locked to the phone waiting…

At 2:30 I got tired of waiting, I called them to check what was going on with my results. The nurse was away, I was assured she would contact me with results when she reviewed them. The suspense broke me, noting it was getting close to the end of the day at 4:00 I called again, the nurse had yet to review the information with my doctor.

At 5:03 pm, Friday, October 26^th I got the call. 

She asked me how I’m doing, knowing full well the weight, the information in her hands held, to me. Her voice dropped as I responded and she began, “the results of your lab work still show that it’s detectable.” She apologized as if she had some measure of control. So as not to needlessly inject tonight, i pushed for an answer, as my doctor agreed, I stopped treatment.
Four months after i started this..
The treatment has failed.

While I know there is a treatment in the future now, one without interferon, I must go a year without an episode. Something I've yet to be able to do, As I consistently have had bleeds since being diagnosed with Esophageal Varicies.

The future’s sky seems a little less bright, but that’s no reason to give up the fight.

I've spent the last four months putting myself through all kinds of hell, I've lost over thirty five pounds of muscle and fat on this treatment, I’m weak, and brittle. I’m tired and my eyes lose focus of elements right in front of me. The muscles in my hands shake violently when I strain them, exhausted from lack of blood. I still bleed from less desirable places, each day reminding me how ragged I've become.

But now I must rebuild, as I have done before, I must focus myself on who I am and what I want from life. For it may not be a long life, but it will be bright, joyful, and filled with love and laughter.

I would be a fool to let something as little as failure hold me back. 

Perseverance

It's hard to describe in words the solemn despair,

No reward, no end yet, not even halfway there.

Just more things to kill me, more fears and more pain,

In a short time now, I’ll wait once again.

A year seems quite long to await some new torment,

But I’m losing more time with each passing moment.

The longer I wait, the less time I have,

In stasis life passes by, nothing left but to laugh.

Perhaps some kind of madness lingers in my mind,

Insanity and serenity leave reality behind.

A built up rage burns the sadness deep inside.

On a torrent of resilience the passionate rage does ride.

A turbulent clash of self, as my mind is torn apart.
A focused calm replaces fear, emboldening the heart.

But even with this new found courage, death is my shadow.

It walks along reminding me I’m steps from the gallows.

Love beside me, whisper shouts be filled with hope and joy,

Reminding me it's not so lonely, with love and friendship employed.

I was attempting to write how i feel about the potential of this treatment failing. It's impossible to truly explain, especially in this limbo.

The pole is awfully low....but i still have hope.

The doc's visit yielded no major new issues, but a colonoscopy just to check, in fact my blood levels are up!

I saw Red

While the treatment warps my memories, and throws my emotions in to chaos, my body has decided that the  physical pain from the side effects of the treatment are not enough.

My esophageal varicies are at it again, i have no idea how or even why any more. Last month i was hospitalized for a bleed, i had an endoscopy performed, two weeks later i had another with no bleeding and everything looked fine.

and yet, here i sit, a week later finding myself in a similar situation to near a month ago.

It's like a time bomb, with no visible timer, it just ticks. Taunting me, reminding me that soon they'll pop and when i'm not attentive enough, i won't be able to react. I fear the treatment is worsening my varicies.

The problem is that now they'll need to up my RX for my beta blockers to combat the varicies, which means if i am allowed to remain on treatment i will have so little energy a full workday will not even be possible, let alone even driving there. 

If this latest bleeding episode turns out to be more varicies, there is a high likelihood that i will be forced to stop treatment, regardless the viral load.

So soon i will depart for my seaside villa in La Jolla, also known as the hospital.

No matter how bad it becomes, i hold steady to hope.

Doctors Orders

I despise the scheduling department, for so many reasons. But here is yet another one; I had an appointment for Tuesday in the afternoon after work with my doc. Apparently no one thought to contact me until two days prior to my appointment to notify the appointment at the close facility was unavailable due to my doctor not being in that week. So instead they moved the appointment at a facility much farther away, to a different doctor two days later in the middle of the busiest day of the week. My 11:00 was more like an 11:45, which I had to talk a half day off work to drive out there to.

So not only did I have to wait two more days to figure out the mess the first scheduler handed me by telling me to stop all meds. But now it was the worst possible scenario for the continuation of my treatment, because it was with the busiest doctor.

So I went to work early, and left to go to the doc. After about twenty minutes of waiting my negative competent nurse came out to talk with me. I still have no idea why; she told me it was the busiest day at that my doctor would be a while. After two minutes of saying nothing of note she returned to bowels of the GI department. So I picked up my lovely Crohn’s disease pamphlet and continued to reread it until I would see the doctor at a little after noon. Ready to explain the shituation of a non-medical professional calling me to tell me I should stop my meds and to fight for staying another month he examined my numbers. Surprised I was functioning, considering the fact that I’d injected post severe bleed and my now very apparent anemia, he explained my numbers are all border line. Since I’d successfully injected and my viral load had not zeroed out it was a cacophony of confusion. Prepared for the worst, I listened as he explained there is a new treatment that is interferon free so long as I can go a year without an incident. After going over more numbers we came to the conclusion that I would continue the treatment for another month, but If I couldn't zero out then, that I would need to stop. It was a mix of news, but the perpetual state of limbo I’m in seems to keep dropping the poll closer to the ground and limiting my potential for success.

Excited for the prospect of a new treatment and another month, I left in good spirits. That night I celebrated the “News?” with some of my best friends. We went to a hidden bar, and I paid with two dollar bills, the night was a release from so much of the tension and insanity of dealing with rapidly growing incompetence of ancillary staff. 

With 14 injections done, I've come too far to give up. I know I've got a long road ahead of me and my body struggles along the path that’s been set. But luckily I am surrounded by support from all my friends and family. Some of the biggest surprises come from friends who I've not spoken with in years, and co-workers who've been following what’s going on as best they can. Everyone’s love, concern, and hope helps fuel the fire within to fight for what I’m doing. If I haven’t said thank you enough, I truly feel your encouragement, prayers and support have helped push me through those harder moments. Thank you all so much :-)

Full Stop.

I received a call today from not my doctor, not my nurse, but rather the scheduler to talk about two things. The first is that I’m going to need to see my doc ( I have an appointment next Tuesday, apparently someone was supposed to call to reschedule, which no one did besides her.)

The second, is a full stop. Because of my bleed last week and hospitalization, I am to stop treatment all together.

My numbers notwithstanding as I just took the test with viral load yesterday, I am to stop the treatment that will stop this bleeding that will stop me dying from this, that will allow me to live a near normal life.

I am to stop, with no information indicative to me that this is failing. No evidence, no data, nothing but the word of a secretary.

FUCK.

THAT.

I will be continuing this treatment until I am convinced otherwise that I must stop.

I didn't spend the last three months in hell to hear this from some stranger on the phone.

There are too many emotions swirling around right now for me to truly encapsulate how enraged, saddened and disgusted I am by this.

But thanks to the emotional enhancement of my treatment, there sure as hell is a lot of rage.

Another lovely twist of it, is that I have to keep my blood pressure down.

To avoid another bleed out like last week.

In case you were wondering, blood tastes like popcorn.

For your convenience a glossary of terms is located at the bottom of this blog

As the weekend came to a close, I kept noticing black stool[i] which was unnerving but only a major concern if I happens multiple times. This is the case for me, because I bleed often. As previously stated I was exhausted this weekend, and a lack of blood will do that do you. The stool and tiredness continued into Monday morning so I packed up an overnight bag and had my dad drive me to Urgent care. After explaining my situation they dropped by about an hour later to start hooking me up with IVs and a heart monitor.

My right arm was set up, and everyone was pretty calm about the whole thing… until I asked for a barf bag.

  Within a manner of moments the taste of popcorn filled my mouth as a fountain of blood spewed forth to the unprepared receptacle. It turns out, when you vomit blood, shit gets serious, fast. Within five minutes, I had an 16 gauge[ii] in my left arm, and more heart stickers for the next heart monitor. The paramedics were right and ready to go, they threw me on a yellow mat to make sure if I vomited again, I would make a mess of things. The most interesting part of all of this is that somehow…somewhere the idea that I have C.DIFF[iii] came into play.

Which required everyone to wear protective gowns and gloves, I just assumed it was because I was bleeding profusely and have Hep C. In either case, upon arriving at the ER I expelled the remaining contents of my stomach; there was…a lot…of blood. As I was wheeled over I was introduced to my ER nurses. Wait, I want to say something here… my ridiculously hot ER nurses. They began the transfusion and gave me some things for the pain. At this point it gets really hazy; they transferred me to the ICU, and as the number of drugs in my system increased, they performed the upper endoscopy[iv]. During the endoscopy they found six bleeders, which resulted in six bands[v]. Every time I swallow I feel the tension against the bands. I was lucky enough to have another excellent nurse in the ICU, and in all my time at hospitals she was by far the best.

Recovery the next day was a blur of sleep and pain medication, my concept of time here is completely garbled. The next nurse on my final morning was unfortunate, besides being late, mixing up my drugs, leaving the door open and locking the bed so I was stuck in the upright position, I think the only part I liked about dealing with her was leaving.

I’m glad to be home now, it was a hell of an ordeal, and I get to go back in two weeks and have another upper endo, hopefully, without the blood loss this time. J

---

[i] Black stool is poop that contains a large amount of blood, typically denoting bleeding from the GI tract.

[ii] The gauge denotes the thickness of the needle, the higher the number; the smaller the needle, 16 is typical for transfusion.

[iii] C Diff is this nasty bacteria that resides in your colon and messes with your colon and stomach if you don’t naturally have it.

[iv] Upper endoscopy is when they fill the stomach with “air” use a camera and tool to cruise down the esophagus and correct any bleeders.

[v] Bands are tiny little elastic bands that deteriorate over time, and are attached to bleeding varacies, they basically tie them off causing them to fall and regrow properly.

Free Fallin

So my last two injections went fine when I broke flesh, but post injection seems to be another story.

Last week’s injection bruised within a day, and has only recently stopped expanding. Since that injection, the ribovirin cough has returned with a vengeance. Fueled by the unusual weather my nose has started over producing mucus.

After this last injection however my mucus is mostly filled with blood, my eyes have become bloodshot and the headaches are getting worse. The injection this last Friday was the worst I’ve had, as I went through and through a larger capillary.  The bruising started almost instantly and will rival its partner on my opposite leg. 

My energy levels have dropped dramatically, and I spent six more hours sleeping this Saturday than I did the last. I have no physical rashes, and yet it feels like I’m itching underneath my skin. The typical liver pain has been enhanced further and seemingly every muscle in my body is lobbying for president of annoying the shit out of me right now. As everything I do hurts, any amount of prolonged pressure inflicts a dull ambient pain around that area. This causes me to shift my position constantly, rivaling perhaps a small child with ADHD.

I made the mistake of easing up on my physical routine because I was too tired, I’m going to pick it back up again and hope it addresses some of the issues. I can’t sit here and do nothing. I’m tired of waiting and having no control over the outcome, I will seize this. I will take what I’ve worked and endured for, and I will not back down. Tom Petty knows what I’m talkin’ bout.

Only two weeks left of the Incivek, so thankfully in a month or so many of my symptoms should disappear.  I’ve still got 31 weeks left over all…. I’ve done 11 Injections this round. I’ve almost through one of hard  parts,  the second hill comes after 30 weeks because of the damage dealt to the injection sites. 

The-Difference

I haven’t posted in a while, as I was waiting for some news.

So now, I present…. Three odd statements that are joined by the conclusion! Enjoy.

Knowing the difference between less than and negative. 

I didn’t understand how someone could confuse to two terms, because <43 is not -43. While technically -43 <43… that’s not really what we’re talking about here… The symbol for subtraction – is also referred to as less than, if you think back to when you’re a kid and you were in lower grades K through 4^th, the sentence would read: “Four less than Six is Two.” Which would of course be 6-4=2  Hence a confusion between the terminology of less than and negative…

The other night I was having a conversation with a friend, explaining that I’d been showing great results with this treatment, he joked that I would probably go negative at the rate I was going…

Today I received a phone call from by nurse… I was expecting a call from my doctor, which meant that this wouldn’t be stellar news if it were coming from an intermediary. She called to tell me the results I’ve been waiting nearly two weeks for. She explained that the results showed progress, but the virus is not undetectable. She then told me my viral load…. Negative 43. I asked her what that meant… her response was “-43 is not undetectable, you have -43.” To which I rephrased myself “What does the negative forty three mean, is it better than zeroing out?”  She again explained “-43 is not undetectable, you have -43.” Realizing this was going nowhere I headed back to work.

Trying to make sense of it I talked with my mom, as she’d gone through this before. As she went through her paperwork I recalled a Less Than 43 Viral load that mom had maintained for six months before eventually being expelled from the treatment as it wasn’t working. The idea behind less than 43 is the number is so low it’s practically undetectable, but it’s still detectable. I put two and two together and realized that is what my nurse meant… less than 43.

This means I have one more blood test to take which shows that I’ve zeroed out, or I’m off the treatment. While it’s great news that I’m so close, I know what my mom went through. She could have ended the failed treatment six months prior but continued on in hopes that the less than 43 would transform into a zero.

Thankfully, my nurse said I’m moving to monthly blood tests which I can extrapolate to mean I have two more chances instead of one to zero out…

Overall I’m not sure what all of this means, but it doesn’t give me the warm-fuzzies by any stretch of the imagination. What I do know is I’ve got a hell of a fight ahead, and it’s the only fight I care to win right now.

There was Nutella everywhere...

I’m going to start up with the videos again next week; I’ve taken a bit of a hiatus from them due to a Nutella accident. I accidently smeared Nutella on the camera lens, and then forgot about it for a week. Future me can deal with cleaning that.

This Thursday I had my blood draw which will determine if I hit that magic zero. Luckily the math is on my side, nine million in four weeks… I should be able to knock out those last two hundred and twenty. Needless to say I’m looking forward to the results on Tuesday. Although… I suspect that the phlebotomist who drew my blood this week not only gave me that lovely rips-your-skin-off medical tape instead of CoBand, but didn’t draw for my viral load. Thankfully I only do these every other week now as the hypersensitivity makes blood draws a pain for three or four days following.

A wild symptom appeared! This one is just plain wonky, I was told gum sensitivity will become an issue, but on some teeth my gums have recessed one to two millimeters… With my hair continuing to thin, if my teeth fall out to boot, I’m going to buy an old pick up, a coon dog, and start quoting Larry the cable guy.

On the up side I’ve had a lot more energy! I’ve been able to do two to three things during the week in addition to work. I’m hoping the trend continues, although how Interferon will hit me each week is hard to predict. On a similar note, this treatment causes muscle wasting and because I eat so much more fat now, puts me at a disadvantage in terms of staying fit. But much to my delight, because of my exercise routine, and my diet I’ve been able to lose about twenty five pounds (mostly fat) in the last three months. I’ve also put on some more muscle weight thanks to replacing the donuts and cookies with cashews, eggs, peanuts and milk.

With my ninth injection over tonight, I have thirty nine weeks remaining. I’m about nineteen percent of the way there. 

Unacceptapill

This weekend brought a little more adventure than I was prepared for. In terms of my treatment I learned a few key points.

-take the correct amount of pills, 20 minutes after 20g of fat, otherwise… you’re gonna have a bad time.

This brings me to the key mistakes I made this weekend that brought a little more adventure than I’d have preferred. On Friday night I accidently look an additional Incivek, which is the ‘irritates the hell out of your colon’ pill, this made the next about twenty hours a balancing act. And by balancing I mean taking lots of Metamucil and drinking more water than normal to minimize the pain. You’d think that the next morning when I took one less, that it would figure itself out… Nope. Not these pills, these ones are jerks.

Another key element to the pills is the 20g of fat, and waiting 20 min. This Monday morning I apparently decided that waiting is for suckas. A manner of minute or so after eating some of my fat requirement, I took my pills with milk.

(The neat thing about taking Propanalol with milk is that it dissolves faster than it does when taking it with water. It tastes like slapping your tongue with a freshly caught albacore. My face quickly explained the terrible mistake I’d made to any nearby.)

Within about five minutes after taking my meds I had flashbacks to when I first started this treatment. And now everything tastes like its coated in a metallic milk… This treatment is so weird.

The treatment also has deeper psychological ramifications. The challenge of the treatment is election, because I have to look at my pills, and syringe, and know that what I’m about to do is hurt myself. Yes, in the long run it’s worth it. But right now, the very idea that each time I prick myself with a needle, it’s going to feel like I punched myself in the leg for a few weeks, and each week stack the bruises. On top every other symptom. The reality that I elect to cause this pain drives strange emotions which are in turn amplified by the treatment itself.

In the long run, it’ll be worth it. J But for now it’s about struggling through it.

ALSO!!!!

i'd like to say thank you to those who joined in and took a shot with me on the 31st! I have a good mess of pictures and video. :) Thank you all for your ever growing love and support! 

A Liver and a Fighter

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.

Lucky number seven!

So fourty one to go! Yes! Also i'm more than halfway through my Incivek, which i take only for the first three months of treatment.

I'm always pleasantly surprised by who ends up reading my blog. :)

So like Veronica Corningstone said:

Thanks for stopping by!

Live like you're dying

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.

42, it's the answer you're looking for.

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.

It's over 9,000,000!!!

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.

Stabbin' time!

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.

At the end there, the video i'm referring to is last weeks, video from the bathroom.

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! :)

Fear Itself

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.  

Inject me, so i can get my...satisfaction.

I starting filming, initially, and i lost connection, and during all this chaos i rocketed out my guts into the bowl via the express-lane that incivek has built in my colon.

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!

The moved ultrasounds over here, this won't be awkward at all... thankfully Torbad came with me (my car wouldn't start so he graciously gave me lift), so two men walking into this center...seems like a good place to pick up chicks....

Tres

Injection number Three! I've got 45 more to go! Not so bad i think.

Whoa ten minutes....a little longer than i'd thought...but then again it's hard to keep a thought going in a sentence. If you haven't noticed i don't edit the footage, it's raw for better or worse.

one of the big misunderstandings about Hep C usually is regarding not only transfer but also the types of people who get it.  A big misunderstanding about the virus is association, It's a general assumption that most people with the virus are  drug addicts, felons, or other society deviants.

I mean, i'm freakin' weird, but i got it through vertical transfer, through my mother. Who most likely got it when she worked in the medical industry back in the 70s.

And of course the big misconception: transference. Hep C is Blood to Blood ONLY. which means the only way it's an STD is if you're having some bloody sex on both parts.

Sleeping

The second injection was more challenging than the first but nothing unexpected. As the weekend has passed, it went better than expected, except the ass pain.

I have a hard time finding the words to perfectly convey exactly what this ass pain feels like, but it never stops. It does get muffled by other symptoms, this weekend I was especially tired and lightheaded. Under normal circumstances I would have suspected I was bleeding internally, but I’m on treatment so anemia is to be expected. Well… apparently in the cornucopia of things I consume in the morning and evening I forgot the one that lowers my blood pressure, thus slowing and halting the blood loss. Today I took off from work as sick leave expecting to be practically bed-ridden, and low and behold I pretty much am.

It’s a gentle line I have to walk with this, because if I’m bleeding internally they have to band me (they tie off the bleeding veins in my esophagus and let them die off) which is a painful experience in itself, let alone now that I’m hypersensitive, additionally if the bleeding is at a critical level (where I could die from the blood loss) pausing my treatment could be considered…and that isn’t going to happen.

I know what some of you are thinking, “Wait, but you could die from the blood loss.” But see… I’ve had so many cases of internal bleeding I can tell where and if it’s manageable or not. Luckily for me the bleeding has stopped, and I’ll just be light-headed for the next day or so.

In any case, sleep has been the biggest part of my entire weekend.

I also learned this weekend that if I don’t re-apply SPF45 every hour or so, I’m going to burn. If I’m out in the sun for longer than ten minutes I burn.

Also: Please sign the petition below, RX companies need to be reminded that profits aren’t all they’re after.

 http://www.hepmag.com/articles/HepC_Combination_Petition_2501_22661.shtml

Injection #2 now with video(not of injection)

So, this is my first video-cast, i'm not live yet! but soon i will be as soon as i figure out how best to link all this mumbo-jumbo.

Regardless, i hit a vein tonight, so gusher time, so i'm very tired.

The symptoms are getting more intense, i get massive aches and pains in my sides. it often feels lik a large man is grabbing my sides and violently shaking them.

These posts after injection are going to be less cohesive, deal with it.

Week one and done!

Holy shits

Okay, the pain in and around my ass right now is ridiculous. It feels like i spent an hour sandpapering  my asshole and then i have a tiny fart based robot randomly applying lemon and jalapeno to remind me that the pain is still there if i forget. I have to take Metamucil now at 6am, and at 7pm on the dot, if i don't... well...Inside wants out. On a walk today i had forgotten to take my Metamucil and just took my pills, the sensations came to bubble. It was like that restless kid on a roller coaster that was at the end of the ride slowly approaching the station of my ass, rearing to leave the safety harness was barely proving itself under the circumstances and the heat, the heat were like the screams as he, trying to break free, explains his excitement for the next roller coaster, already on the horizon.

Except the train and child are a mass of hot magma, a fecal torrent of despair, and  the unholy remnants of the pills burning the walls as it travels. the safety harnesses are my soon weary muscles struggling against the odds to keep in, what so obviously wants out.

TLDR; i'm installing a seat belt on my toilet, because it's gonna be a bumpy ride.



I should learn how to make a mature filter on some of these posts.

Tuesday, it’s come and gone, sans coat.

This is Good Idea, Bad Idea. Little things I've learned so far about my treatment.

Good idea: Tylenol before injection.

Bad Idea: Aleve before injection.

Why? No clue. I’m no biochemist, but here’s the big difference I’ve noticed Tylenol not only packs a faster punch it also helps the quell the fever, while Aleve just makes you glad it’s processed in your spleen so there’s less pain in the liver.

Good Idea: Metamucil

Bad Idea: liquid Pep-to

The run down, pun intended: So Volcanic shits are these hot pyroclastic flows of fecal matter that erupt with only the warnings similar to a volcano…slight swelling and brief earthquakes. The liquid pepto, while calming the sick puffer-fish stomach, helps foster the rush. Much like a coal mine too close agitating the mountain.

Metamucil, twice a day, erryday. Give me all of your fiber. It makes the burning stop, and slows the flow, sometimes it’s solid!

Good Idea: Nuts and all the water

Bad Idea: not eating nuts

I’m not crazy, nuts are great. I’ve been snackin on Cashews, a decent about of fat, and other stuff. Whatever it stops the puffer-fish sometimes so that’s cool with me. Also water, I drink easily 200oz per day, I feel crappy if I don’t.

Good Idea: Thinking things through, and explaining your feelings when in rage mode
Bad Idea: What normally happens.

The emotional side effects can be devastating when not handled properly, typically RX occurs when a subject approaches depression. The first time i did this was hard, the mood swings were massive and no one i talked to could seem to understand what was happening, i fell into a depression. Instead of RXing it i slowly worked that shit out, and came to my current understanding. This helped dramatically when the second time came around i managed to avoid a lot of stupid shit that i would have done otherwise. Emotional side effects have just started to hit me in this go around (Wed 7/18/12) rage mode has no point, it starts from something, anything and becomes this monster that if it finds anyone latches onto them and directs the feeling at them. 

MORE TO COME!

A Case Of The Mondays

My first weekday on the treatment went smoother than I expected. I managed to wake up, take my medication, and get to work at a reasonable time. While I was slammed at work, I had come in expecting to be required to work overtime, thankfully that wasn't the case and I was able to leave at a normal time.

I had to watch my temper several times, as I noticed a new symptom; pointless rage. While the last two times I noticed a drop in testosterone, this time it feels like my testosterone levels have risen. The result: I have to watch my mouth, or I’m going to say some really stupid things.

I've also noticed a less interesting symptom, while before my stomach only hurt when nearing empty, instead it just hurt. The pain was akin to how I imagine having a freaked out puffer fish in my stomach would feel. My sides felt even more intense shots of pain throughout the day, and I could not stop farting.

Swear to God, I’ve never had so much gas in my life. I’ve decided to add eggs and cheese to my morning diet, so that I can stop eating this crap for my mandatory 20g of fat. The crap I’m referring to is crumb donuts, cinnamon rolls and PBnJs. Don’t get me wrong, I love a good PBnJ, but I’d like to enjoy them after treatment.

I powered through work and managed to get through my first work day on treatment.

I’m working on figuring out how I want to set up the vlog, but I’m hoping to stream it live for ya, Friday nights from 7-8, right after my injection. 

New Symptoms: rage, more gas, puffer fish stomach, achy-breaky sides, oh and a super cool random five minute headache that comes and goes each hour and feels like someone is stabbing a random part of my brain. 

Day 3

Saturday night, I decided I’d be bold, and head out. After a two hour nap and a shower I figured I’d be able to handle a little while downtown as the worst has yet to come. While driving wasn’t a challenge (but to my surprise) the hordes of people were an issue. My newfound hypersensitivity played a very unfortunate role as the passersby brought the smells of the comic-con hall out with them. I was hoping to meet up with friends but due to communication gaffes and my spiking a fever earlier than anticipated I was only able to meet up with one.

But all in all it was worth it. The night taught me there is no way I can go beyond a few miles from my home at night, and I most assuredly should not drive.

Sunday brought the return of my energy, a new metallic taste and volcanic diarrhea. I made the most of the burst of energy by attempting my normal workout routine, I cut my reps in half and toned down the weights but much to my surprise I managed an hour, guitar and videogames killed my mind for a few more hours while I debated what one thing I would do today. I knew I couldn’t risk over doing it again with my first day of work the next day so I hung out with a friend for a bit, Waggery (Waggery is a group of my best friends, we’ve known each other for a long time) invited me out to Islands, but the times didn’t work out as I’d already committed myself for the evenings events and also I hate Islands.

The most challenging thing so far is figuring out what I can and cannot do, because as inhibiting as the treatment is becoming, it still allows me to be able to have one choice per day. Trying too much could drain me, something I’m glad I realized early on.

Additionally I’m glad I was able to get in better physical shape before the treatment this time, it’s proven to be one of the best choices I’ve made in a while, and I’ve a good friend to thank for that. Her tenacity against the odds has been inspirational to me, and it’s brought me to a new goal.

Next May (2013) while I am still on treatment, I plan on participating in the American Liver Foundation's Liver Life Walk. It’s only a 5k, but while on treatment it may as well be a 25k. Also I want to do more than that; I want to raise ten thousand dollars. It sounds lofty, but given the amount of time I have, and how much I plan on hustling, I think I can do it.  I’m going to piece everything together and build the website for it come October.

Day 1 and 2

Today is Friday the 13^th and while most consider it to be an unlucky day, it’s the day I’ve chosen to start my treatment. I had originally intended on starting months ago, but issues with insurance companies delayed my start date until now.

Today is mostly prep, until a little before 1900, then I begin. The treatment consists of six pills in the morning and six in the evening, they must be taken 15-20min after eating around 20g of fat. Additionally there is a weekly injection, while most of the time the injection is easy, occasionally you get what my mom so lovingly calls a “gusher.” It’s when you miss the fat and hit a vein… needless to say it hurts, and usually bruises.

Having done the treatment before I know that to expect, to a certain degree. This treatment includes a whole new drug, and it’s one hell of a doozey. The drug is called incivek, and has some crazy side effects including myopathy and lots of rectal issues/anemia… it’s less than pleasant.

--this previous part was written before injection—

After the initial injection, it’s not terrible, it’s just like the last two times, I feel very tired and a little nauseous, memory has taught me to take a Tylenol PM prior to injection so it cushions the initial injection.

I had intended on posting this last night, but I fell asleep in delirious haze, as if I hadn’t slept for days.

This morning brought back memories, aches and pains all over my body, random burning and freezing sensations, hypersensitivity, nausea, I feel physically weak and a new symptom burning diarrhea. Pepto is not helping this cause much.

I’ll be setting up my camera for a vlog that I intend on doing post each injection, you may even be lucky enough to watch me inject! This treatment is not for the faint at heart, i dropped my fear of needles when I was a kid.

This weekend is also comic-con, and for the first time in 14 years, I’m not going.

So it’s a strange weekend…

A Reasonable reason

I guess it would help if I explain why I’m writing this, why I feel so strongly about it, and why I need your help to spread the word regarding the dangers of viral hepatitis, and to promote causes that can facilitate it's eradication.

My name doesn't really matter, so call me Bonhomme. I was born under relatively normal first born c-section circumstances, except for a microscopic difference. I am one of the few vertical transfers, which means my mother had Hepatitis C, and gave it to me once I was born. My brother and father do not have it, it’s not genetic, it’s not an STD, it’s a bloodborne pathogen which means it is transferred only through blood to blood contact.

It’s a strange virus and doesn’t affect everyone the same, it attacks the liver, causing hepatitis (hence it’s name.) Generally speaking the virus can cause: Jaundice (yellowing of the skin/eyes brown by the cuticles), fatigue, chirosis, fibrosis, liver cancer, abdominal pain, dark urine/stool, loss of apetite, nausea, vomiting. What does all of that mean? It means If you’ve got Hepatitis, you’re gonna have a bad time.

Due to the nature of a deteriorating liver, transplants are often necessary(it doesn’t cure the virus, just prolongs life) but even with transplant the life expectancy is decreased. For myself I was staring at timer that say death before fifty… now some of you medical professionals or Wikipedia experts are going to question that, because given what I’ve said it should be before sixty. The catch is that I have not only the hardest of the hardest to cure types… I also have developed esophageal varicies, due to my deteriorating liver.

I’m not the worst case of this…shituation, but I’m in that bracket. I’m also classified as a non-responder.

What’s a non-responder? In this case it’s someone who has not responded to treatment…. In my case it’s twice I’ve failed… so here we go third time’s the charm! Each treatment has been progressively stronger.

So here we go, here’s to forty eight weeks of feeling terrible, and to going from Hepatitis C to Hepatitis Free…