Tuesday, November 16, 2010

No more shots

Hi everyone! Yet again, I forgot I had a blog and then I get excited to see what I wrote and see what everyone else commented and it feels good each time, like they're new comments!

I did shot #48 on Friday which is the last one. I have to take my pills through this coming Friday and then that is it. Done. I will get bloodwork done in May 2011 which is my 6 month post trestment bloodwork to make sure I am still clear of the virus. I am confident that will come back clear. After that, I wait until November 2011 to get my 12 month bloodwork. Providing my 6 month comes back clear, my 12 month should come back clear which means I am done and it is all gone! Woohoo!!

It's been a journey, I'll say that! I am so happy to be coming to the end of this and am so grateful for those who didn't abandon me when I really needed help.

Recovery is still a long road. I won't start to feel "myself" again for several months which means I'll still get out of breath climbing 4 steps, I still won't be at the gym, I'll still need people to walk slow if we go somewhere, and I won't be ready to tackle any dancefloors yet. But in the end, it will all have been worth it. I've met some amazing people from all over the world and they supported me the entire way. I get to meet many of that motley crew this May/June whilst in England. =)

Friday, August 27, 2010

Oops! It's a side effect!

So I totally forgot I had a blog. For anyone still interested, I'll remind you that I'm doing a 48 week treatment to kill the hepatitis C virus from my body. Tonight I did shot #37 which means I have 11 weeks to go.

How's it been? Crappy. I was having eye problems and so my treatment was stopped for a full week which is a HUGE deal but I had no choice. I then resumed with the doctor's approval and since then my side effects have gotten pretty bad.

Brain fog is obviously pretty serious seeing as how I forgot I had a blog lol. I've also had major skin rashes, joint pain, muscle pain, nausea, diarrhea and mega-hemorrhoids. I can't say that's a real word but I did have to include "mega" because it involves pain and blood. The fatigue is pretty bad as I can barely get up for work in the mornings. Showering is a major chore and it seems to take forever to do. I always did take long showers but I have no energy to get through them now. I've lost weight because I have practically no appetite. I can't eat spicy foods anymore, my taste buds have changed greatly, and often times I eat only because I need to take my pills with food. Not because I'm hungry. I get way too out of breath to exercise thanks to my anemia (anemia due to meds) and so I'm no longer going to the gym. I tried swimming but that didn't work out. I walk dogs now, that were rescued from euthanasia and that is the extent of my exercise.

On a good note, my hair stopped growing and then began falling out and so I cut it short. Then it stopped falling out and is growing again. My eyesight has actually IMPROVED which is a rare side effect from treatment but it's probably only temporary.

I've made some amazing friends on my support forum (hepcnomads.co.uk) and I've seen people start and finish and move on with their lives. Lucky bastards only having to do 24 weeks while I do 48. But hey, awesome for them and now they're my cheerleaders.

So, I hope I remember I have a blog and can update all those interested.

Peace out!


Wednesday, January 27, 2010

The Running Emotions

I was just at a convention in Las Vegas for work and heard the greatest quote for when people are acting high and mighty and so much better than you. It goes like this: 'You did not invent the cure for cancer that tastes like chocolate.' In other words, get off your high horse, stop treating me (or anyone) this way, and shut up. It's a nice and also effective way to get a point across.

I also learned about people that are constantly victims. We all know them. Anything that happens, Oh my God, why is this happening to me? Blah blah blah. So dramatic. I've learned on hepatitis C treatment that there are certain people I can no longer tolerate and it's not because they are a bad person or anything. It is my perception of them and I currently do not want them in my life. I've got quite a bit to juggle without drama constantly brought on by someone else. Or some people I am now finding to be offensive that I never perceived as offensive before but since my emotions are heightened, I am taking their comments to heart and their comments really do hurt my feelings. I try to tell myself that it is from my ribavirin and that I need to let it go, but if something hurts, I can't let it go.

I don't look sick as most people on treatment do not look sick aside from a few exceptions. Since I look fine, people expect me to BE fine. I'm a total trooper and if I hurt, I still do things. I can't drink anymore but I still go to bars with friends and get non-alcoholic drinks. I occasionally go dancing but not as frequently. I go to work when I hurt or if I'm up all night with nausea, insomnia, or diarrhea. If I'm out and I say I'm tired or my joints hurt, I don't expect to be belittled for wanting to head home because it really does take a lot for me to get up and go. And yet, I look fine so I must be whining and complaining for no reason. Or I'm just lazy and am using hepatitis C as an excuse.

It's extremely frustrating and I know I am not alone in the land of people fighting this tricky virus. The people that treat us like this do not understand what exactly we are going through, that we have a very long time to go through this treatment (48 weeks for me), and then in the end, I could still end up on a list for a new liver and if I even get one, and one that my body accepts at that, I will still have hepatitis C. Things are bleak. I am a positive person but this is always in the back of my mind so when someone complains about trivial things, I often want to punch them but fortunately I know this is not acceptable. I still imagine punching them and watching them cry and it just feels so damn good. And then I realize that if anything, I should feel bad for them for having to show off their troubles to the world for attention because that's what it is.

So, I guess the point of this blog is that I am over dramatic people being dramatic. I'm sorry, I don't care if the waitress forgot to bring you ketchup. Be nice and remind her. I don't care if the Gap doesn't have your size pants. Go to Banana Republic. Try doing 48 weeks of a chemotherapy treatment to hopefully save your liver and deal with the side effects and be sober and get through life uncomfortable every time you move. Better yet, think about the little kids doing chemotherapy for cancer. How do your life problems seem now? Still think you have something to complain about?

Monday, January 11, 2010

The All Important 4-week Blood Test

In the treatment of hepatitis C, the 4 week blood test is a point in treatment where ideally, the virus is undetectable in your blood. At the very minimum, you hope for a 2 log drop. What? Okay. Let's say my viral load (VL) was 100 (that's not realistic but it's to simplify). A 2 log drop means that that it has to go from 3 digits to 1 digit (100 to 1). If it was 1000, a 2 log drop would have to go from 4 digits to 2 digits (1000 to 10). Do you get it? So, if my VL was 1,000,000 what would a 2 log drop be? I'll give you a couple seconds................... (if you said 10,000 you'd be correct). I started at 140,000 which is not a high VL to start with and a 2 log drop would mean that I'd need to be at 1400. Ideally lower (as in a big fat zero) but we take what we get. Some people do not respond at all which is extremely unfortunate. Others respond well, others mediocre.

Today, while looking at vacuums at my local Target in West Hollywood, my doc called to tell me that he's quite pleased with my results. I'm responding very well to the treatment and my VL has gone from 140,000 to 43 which is a 3.52 log drop. I was hoping to be undetectable but I have to take in to consideration that my 4 week blood test (also called EVR for Early Viral Response) was actually done a little into my 4th week so technically it was 3 weeks and like 3 or so days. Had I waited the extra days, I'm quite sure I'd be undetectable. A 2 log drop means 90% chance of clearing this. So at this point, if I were to retest, I'd most likely be undetectable.

I see him on Monday the 18th of January as scheduled and we do have things to talk about. For instance, many people become anemic on these meds and I am now slightly anemic which explains the fatigue when I'm in motion. See, I'm not just lazy! I'm anemic! But, there are meds to help with this called Rescue Drugs but I'm not so anemic that he's ready to do this, we're just going to monitor me. If the fatigue gets worse then that means my hemoglobin has dropped even more and I may need to take action. I need my hb (hemoglobin) to be around 10 and I'm currently below 10 but I will get those figures when I see him. Too low and he will reduce my Ribavirin which will decrease my chances of success which I don't want. Even though I have a 90% chance of beating it, I still have to keep the virus gone. I still have to complete the 48 week treatment (43 more weeks to go) and when I'm done, I still have to get tested 6 months afterwards and then another 6 months afterwards to make sure it has not returned. If my hb gets too low, we'll start with rescue drugs before reducing my Ribavirin.

And now, business as usual. 1 shot per week, 5 Ribavirins per day, 1 vitamin D per day and 3 Milk Thistles per day. Oh yeah, and 1 gallon of water per day.

Upon getting the news, I nearly broke down in Target and had to send out a few texts to which I got a fast and wonderful response which made me get all teary-eyed again in the store. I sat on one of their sofas in the furniture department (up on a platform but I just didn't care) and texted away. I cannot thank my support system of friends enough. From Riba Rage fits at work to complaining if I'm sore or tired, I've been supported by just about everyone and this is not doable without that support. I also belong to a wonderful forum of the most wonderful people also battling or finished battling hepatitis C (the Nomads based out of the UK) and without their knowledge and support it also would not be possible.

Again, thank you all for everything and looking forward to November of this year when this is done. Stay tuned for updates!


Thursday, January 7, 2010

Vision, Drugs, Exercise

Going to the gym like I always have is clearly out of the picture for me now that I'm on interferon / Ribavirin combo therapy. After my workout and New Years weekend, I was in so much pain that I did not go to work on Monday. I also had severe nausea on Monday morning. No vomiting, but continuous dry heaves.

In order to get exercise that I need, I've volunteered for an organization called Ace of Hearts which rescues dogs from euthanasia and try to find them homes. I'm a dog walker. Yesterday was my first day and was told I'd be walking Bianca but as it turned out, Bianca walked me and wiped me out. I'm going to try to do this every other day. The walking helps push the meds through my body, fights depression, keeps me a little more active to help in clearing hep C, and it makes a dog very happy for about a half hour so it's a good deal.

After work today I had an appointment with my eye doctor as people can go blind with the treatment I'm on so this needs to be monitored. 4 weeks in to my treatment and my vision has not changed. I do occasionally have 'floaters' in my line of sight but it's not all the time and my doc doesn't think we need to worry about it. I was actually quite impressed with his knowledge of hepatitis C and the treatment that I was going through. I could tell he honestly cared about my vision and asked me to find out exactly how frequently I am to be seen, and he was concerned with my overall well-being on this hellish treatment. My cold doctor warmed up. It was so strange!

After that, I went to pick up my meds from CVS. Last time I had problems picking up the interferon because it's such a ridiculously expensive drug that my insurance didn't want to do it until they knew it was necessary (because I'd love to go on interferon for the way it makes me feel; not!), but this time around, no problems. And so, tomorrow will be shot #5.

Which brings me to my 4 week blood test! This is the first point in which we test my viral load after starting treatment. To have a really good chance at beating this, I need to be undetectable by week 4. I took my test a few days early but I'm still hoping for undetectable. This will increase my chances of beating hepatitis C to 90%. If I am not undetectable, my next test is at 12 weeks and if that's not undetectable, it's really not going to be worth it and so I'd most likely end treatment. But, I don't want to think like that. I am visualizing my 4 week coming back clear (even a few days early!) and holding clear forever. I'm over this stupid virus and it needs to be eradicated promptly.

On Saturday I am seeing my fabulous stylist Angel at Vous Hair on Melrose and we're going to cut my hair pretty short. I'm not buzzing it yet as my hair seems to still be holding on for the most part, but the shorter it is, I think the less it will fall out and so we're going short. I'm tired of plucking my hair out of my food and I'm obsessing in the mirror at thin patches that Angel says I'm making up.

For side effects, I still have joint pain, my eyeballs do hurt, the floaters I mentioned earlier, my appetite comes and goes now, and oh yeah. Fatigue! I get so tired and even 10 hours of sleep does not feel like enough sleep. The less sleep I have, the worse I feel, but I've yet to find the right amount to keep me feeling well. My Ribas are causing some Riba Rage. I do okay and then something sets me off, usually someone being rude to me, and then I have a hard time letting it go. I know it's healthier for me to brush it off, but I get so angry. I pity the fool who treats me poorly to my face!

Talk to everyone soon! Thanks for reading!! If there's anything you'd ever like to know or hear more about, let me know. My life has always been an open book so don't be afraid to offend or anything.


Thursday, December 31, 2009

New Year's Eve!

Well, today I finally got back into the gym and I wanted to die. I did 1/2 of my usual cardio and about 1/3 of the weights I usually do. Nausea and body aches hit and so in calling it a night, I weighed myself and am down to 155lbs. Yikes! That's low! I know I've lost muscle mass and therefore, feel unattractive. I have this scrawny body with love handles and no muscles. Sexy! ;)

I've also noticed that virtually every meal I eat, I find a hair in it. Don't worry, it's mine. I don't wash my hair every day anymore to hopefully keep it for a while but hair loss is inevitable. From what I understand, after shot #2, hair stops growing and then several months after that it begins to fall out. My hair is still growing which is exciting. I'm still going to buzz it once it starts to really shed, though.

All in all, my sx (side effects) from this bloody hepatitis c treatment are manageable. Many people are much worse off than I am and I recognize that I am a very lucky person where this is concerned. Many people can barely get out of bed and just hurt every day, always tired, etc. Don't get me wrong, this is no picnic but it's doable. I'll be extremely happy when it's done and I know that as long as it doesn't kill me (which I'm refusing to let it kill me), it will make me stronger. When I am so tired that I want to go to bed at 7pm, I get up and walk around my little apartment. When I hurt (oh yes, those joints are still yelling at me), I get up and walk. There's not much I can do about the 'brain fog' though. Wondering what that is? I've always had a bad memory but my treatment for hepatitis c has helped me forget more things more frequently. Sometimes there's confusion or sometimes I forget something that happened yesterday. I asked my friend Tina if she'd seen the movie 'NINE' with Penelope Cruz and Nicole Kidman and she told me that she and I saw it the night before. Oops! Oh yeah! We did!! Or sometimes I'll forget where I'm going while I'm driving and just automatically drive to a familiar location like a zombie, thinking that that's my destination. Then I get there and wonder what I'm doing there and realize that it's the wrong destination. That's not as frequent as the forgetting things but still annoying when I take a detour to make a stop somewhere and then forget to stop (i.e. the post office to mail my Netflix).

And that brings us to, it's New Years Eve!!! I'm heading out with two friends tonight to a nightclub here in West Hollywood. No, I don't drink, but I still get tanked up on Sugar-free RedBull and dance until my body tells me I can't dance anymore. Haven't gone dancing in a while so this should be interesting. I hope I still have it!

Everyone please have a wonderful and safe New Year and I truly hope 2010 brings you all much health, love, and prosperity!


Sunday, December 13, 2009

1st shot done

Friday at 10:30am PST was my first shot of interferon. I went to work and around 1pm I started to get a slight headache. By 2 I had chills and a slight fever. By 3 I was headed home to bed. It was one of the worst nights of my life.

The shot itself was easier than I anticipated. You swab the area with alcohol, let it dry, clip the needle into the syringe, pinch some fat on your stomach (I admit to having some) and then push the short needle into the gripped fat/skin. It goes in about 1.5" so it's not bad. You pull on the syringe a tiny bit to ensure no blood enters meaning you hit an artery and when all clear, you push the interferon into your body.

If you've ever been so hung over that all you can think of is that you want to die, and really mean it, that's where I was minus the fun alcohol-infused night before. I honestly wanted to die. I started thinking of everyone I'd be leaving behind and for a couple minutes thought I was in fact dying and I was amazingly prepared.

All night I had a fever, body aches, chills, joint pain, nausea, headache. I kept getting up to use the bathroom because I had had so much water throughout the day. It took everything I had to get to the bathroom but I pushed through.

My alarm went off at 7:15am because I need to take my ribas at 7:15am and 7:15pm (give or take a few minutes) and I woke up feeling on top of the world with an extra bounce in my step. By 1pm the headache and fever resurfaced which makes me wonder if it's the ribavirin giving me sides and not the interferon. I was exhausted from shopping for about an hour which is unusual as I'm typically quite active. Having gone to a holiday party tonight, I took my ribas at 7:15pm and by 10pm the headache and joint pain began. I sit at home, some joint pain and a slight headache, but alas, I will go to bed and see what tomorrow brings at 7:15am.