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?
Wednesday, January 27, 2010
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!
Adam
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!
Adam
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.
Adam
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.
Adam
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