tag:blogger.com,1999:blog-24049885529405683852024-02-08T09:22:54.658-05:00HCVnMEAn ongoing documentation of my second, but technically first, round of treatment for HCV, gen 1a.Jerseymom3http://www.blogger.com/profile/12456543617837503920noreply@blogger.comBlogger20125tag:blogger.com,1999:blog-2404988552940568385.post-11632330135316466672010-11-21T12:11:00.000-05:002010-11-21T12:11:28.822-05:00Long Time, No See<strong><span style="color: purple; font-family: "Trebuchet MS", sans-serif;"> Okay, so I guess now I know why I'll never make it as a committed writer or blogger....It's been almost 2 months since I've checked in here. My how time flies when we're having fun!!!!</span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> All things considered, not much is new. I suffered from a really nasty sinus/respiratory infection for 7 weeks in the fall, and that threw me for a loop! I'm guessing my compromised immune system had a lot to do with it, but then again, others I know had the same condition. The worst part was the inner ear involvement which then brought on severe vertigo. Never had it before, and hope I never have it again!! Innumerable dr. visits and 3 antibiotics later, I now realize how bad I reallly felt!</span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> HCV wise, we're plugging along. I'm at week 34. Almost half way to the ideal treatment length, and 3/4 to the minimal treatment time of 48 weeks. I can't deny that I'm really tired of it!! I push myself to get through the things I have to do, and am getting better about prioritizing extra stuff. I've thrown in the towel on a lot of my independence, and let my husband drive me around to do the week-end errands. </span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> Symptom wise, I think the hair is the worst for me to deal with. I still have some, and I admit there are lots of people out there who would be thrilled to have what I have. But my hair used to be one of my very best assets, and now it is flat, coarse, and unresponsive. I've gone to a very short "pixie" cut, that still looks awful, and I am seriously considering a wig. My doctor assures me that it will grow back when this is all done; seems like a long ways away! </span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> Otherwise, I continue to be tired, my skin is very dry, but knock on wood, I haven't developed a true riba rash. I have restless leg syndrome, particularly on the week-ends after my injections, and get lots of aches, pains, etc. But it is tolerable. I notice that I have more "brain fog" lately, and try to be careful about what I say and where. </span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> I appreciate the support I have from all those who are seeing me through this journey. I am realizing that it is a long road, and wish there was more recognition of it and support for it in a public way. For example, I could really benefit from some of the American Cancer Society's resources for dealing with my appearance, i.e. hair loss and make-up needs. But I hesitate to fib my way into a meeting by projecting that I have some sort of cancer. That's just bad karma as far as I am concerned. Most people just don't realize what a full plate HCV and treatment is.</span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> Wishing you all Thanksgiving blessings. Thank you for your interest, hope, and prayers. </span></strong>Jerseymom3http://www.blogger.com/profile/12456543617837503920noreply@blogger.com0tag:blogger.com,1999:blog-2404988552940568385.post-90576160183668310372010-09-29T21:25:00.000-04:002010-09-29T21:25:35.222-04:00Week 24. 48 To Go<strong><span style="color: purple; font-family: "Trebuchet MS", sans-serif;"> I guess it's a good sign that I don't feel the need to blog as often as I originally did! It's been 3 weeks, and I really don't have a lot to comment on! </span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> I'm not experiencing any new or changed symptoms at this point. I am working and giving it my all, very tired when I finally do slow down or stop, and pretty wiped out on week-ends. My hair loss seems to never slow down, but thanks to a wonderful hair-dresser, and good genes, it's not real noticeable. I do get a bit freaked in the shower, when I wash it and end up with hair all over my face, like a spider web! And I try to be aware of my shoulders during the day and brush off my clothes. I keep wondering how this will end up, and if ultimately I'll end up with a wig or funky hat. But in the long run, that's now a lot to worry about.</span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> Good friends of ours came to visit Friday night and brought food with them! It is so relaxing to be able to stay home and just enjoy the company. Again, old friendships come with many blessings!</span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> We went out of town for the 3rd time since treatment began on Saturday. We're used to driving a lot, and usually I can't keep my eyes open. But I'm finding I can't really relax, and have a hard time sleeping in the car. Not a good thing if that's the only available time to rest! We enjoyed checking on our boat at the marina, and went on to spend the night with good friends. It was good to get away again, but I was wiped out by Monday!</span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> So I just realized I am 33% of the way through this!! That's a milestone I can sink my teeth into! Thank you for all your thoughts and prayers and good wishes! No news is usually good news with me! </span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> </span></strong>Jerseymom3http://www.blogger.com/profile/12456543617837503920noreply@blogger.com0tag:blogger.com,1999:blog-2404988552940568385.post-38080057991768022832010-09-05T20:43:00.000-04:002010-09-05T20:43:10.265-04:00No News Is Good News<span style="color: purple;"><strong>I realize it's been awhile since I last posted, and I guess that is as good a sign as any that I am getting along okay. I haven't felt that there was really anything noteworthy to post about!</strong></span><br />
<strong><span style="color: purple;"> We got away for a week in August, and it went well. My family took good care of me during our visit, and I consciously cut back on making plans ahead of time. Usually I want to go, go, go, and not waste a minute; I used my time wisely and made sure that I had the energy for priorities such as visiting with my dad. We took 36 hours away from family and toured 2 Frank Lloyd Wright houses and spent the night in a charming old inn on a mountain side! And we even managed to pull off a wonderful day of visiting with 2 out of town cousins! </span></strong><br />
<strong><span style="color: purple;"> Adrenalin kicked in as I spent the next week preparing for the school year. I amazed myself that I could push so hard and get a lot done. I worked in my classroom for 4 out of 5 days, straight through the day. Every teacher knows that organization and planning ahead of the students' arrival pays off hugely for the entire year. I didn't get it ALL done, but feel satisfied that I'm on the way. This week I put 2 official days in, met some of my students, but really begin teaching for real in 2 days. </span></strong><br />
<strong><span style="color: purple;"> I saw the dr and had blood work done, and it continues to hold very steady and strong. I have been so very lucky that I am responding to and tolerating this treatment so well. That being said, I've had a tough week-end again. Very little energy and ambition, lots of heavy duty naps, and not much accomplished. Tomorrow is Labor Day and hopefully I will wake up bright-eyed and bush-tailed to finish up what I need to do. </span></strong><br />
<strong><span style="color: purple;"> That's about it. This is week 19. Ideally I have 53 more to go. It is a way of life, but not too exciting at this point. Thanks for all your thoughts, prayers, and well-wished!</span></strong>Jerseymom3http://www.blogger.com/profile/12456543617837503920noreply@blogger.com0tag:blogger.com,1999:blog-2404988552940568385.post-33558732930019143532010-08-12T11:07:00.000-04:002010-08-12T11:07:02.995-04:00Same Old, Same Old<strong><span style="color: purple; font-family: "Trebuchet MS", sans-serif;">Well, here we are finishing up week #15. Not a whole lot has changed since my last post, which is a good thing. My blood work has remained stable, I have settled in to a workable daily routine, and the beat goes on. </span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> I do find that I am running a low-grade fever each day, and typically break out into a sweat, right about noon! At first I thought it was because I was pushing myself too hard, but now I realize it still happens when I'm not active. Not a big deal, and again, one of those side-effects that comes with the territory. </span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> I'm looking forward to taking our first road-trip on medication. We'll be gone for about a week, and have planned out each day to allow me to rest and not take it too hard. We will see lots of family, and work in some sightseeing. It should be a good break for my husband, too. He doesn't complain and looks out for me, but life with me must be pretty boring for him. </span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> The following is a list of common side effects associated with this treatment:</span></strong><br />
<ul><li><strong><span style="color: purple; font-family: Trebuchet MS;">Fatigue/feeling tired</span></strong></li>
<li><strong><span style="color: purple; font-family: Trebuchet MS;">Flu-like symptoms, including fever, muscle aches, and chills</span></strong></li>
<li><strong><span style="color: purple; font-family: Trebuchet MS;">Nausea or vomiting</span></strong></li>
<li><strong><span style="color: purple; font-family: Trebuchet MS;">Feeling anxious, depressed, or irritable</span></strong></li>
<li><strong><span style="color: purple; font-family: Trebuchet MS;">Insomnia</span></strong></li>
<li><strong><span style="color: purple; font-family: Trebuchet MS;">Hair loss</span></strong></li>
<li><strong><span style="color: purple; font-family: Trebuchet MS;">Headaches</span></strong></li>
<li><strong><span style="color: purple; font-family: Trebuchet MS;">Dry, itchy, and/or irritated skin</span></strong></li>
<li><strong><span style="color: purple; font-family: Trebuchet MS;">Anemia</span></strong></li>
</ul><strong><span style="color: purple; font-family: Trebuchet MS;"> So you can see, although I have had some of these, all in all, I am doing really well with the treatment. Thanks for your interest and thoughts and prayers. Live each day for the most! </span></strong>Jerseymom3http://www.blogger.com/profile/12456543617837503920noreply@blogger.com0tag:blogger.com,1999:blog-2404988552940568385.post-19272456966631224782010-07-26T09:49:00.000-04:002010-07-26T09:49:53.658-04:00Hair Today, Gone Tomorrow??<strong><span style="color: purple; font-family: "Trebuchet MS", sans-serif;"> I've been out of school for 3 weeks, now, and am beginning to enjoy the summer vacation I waited so long for. I totally relish slow, quiet mornings on my deck with the birds and meditation. I find that I can run 2 or 3 errands in my car, and then get tired out, so I try to do those in the morning. Most days I schedule in a nap of 1-2 hours in the afternoon, to give myself some recharging for the evening. </span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> The "brain fog" created by these meds has set in. It is difficult for others to understand. Instead of being able to "multi-task", as I am used to, I have to deliberately think about what I am doing and remind myself to stay focused. I make lots of notes, and that helps. Communicating is sometimes a struggle. I have to really THINK about what I want to say and how to express it so it comes out the right way. I think that is why I don't like talking on the phone much. Writing has always come easy to me, but not now. The words on the paper just don't feel expressive of me, and that bothers me personally.</span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> I realize that I may be more depressed than I want to admit. Depression is the number one side-effect of these drugs, and I'm always questioned about suicidal tendencies by the medical people. I did make it to the Jersey shore last week for an overnight with my good friend. I knew it would be a physical struggle, but actually it was so good for me to get away and be in a new environment. I paced myself as best I could, and did take a nap in the house in the afternoon before going to the beach. Walking on the sand is taxing, but once I got to the water's edge, settled in my chair, it was worth it!!</span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> The same for being with other friends. It is easy for me to put off making plans because I don't know how I will feel. Going out to dinner means getting dressed, spending time in the car, focusing on conversation at dinner when I don't really feel like eating, and getting back home again. Things we all take for granted in every day life seem like a big mountain to me right now. But a dear friend understood last week, and came to our house with a bag of munchies for the evening and a bottle of wine (not for me!) and we had a wonderful low key evening of catching up. Perfect! All I had to do was go upstairs and get in bed at the end of our visit!</span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> So the hair thing. It hit this week. My scalp began itching like crazy, and I chalked it up to lots of sweating at the beach under my straw hat. Or maybe a case of sand fleas? It seemed very full and even my eyebrows were a bit bushy. (They're blond, so not so noticeable). And then I realized there was lots of hair falling on my neck every time I brushed my hair. Went to a scheduled hair appointment on Friday, and she confirmed that she could see a big difference in the volume of my hair. And my eyebrows have virtually disappeared, along with most of my long eyelashes. So it goes. My hair is short, and although I can tell a difference, it still doesn't look real apparent to others. We'll see what the coming weeks bring. Amazingly, I'm not as depressed about it as I expected.</span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> I have to get to my chores! I am now scheduling in at least one limited chore a day. I HAVE to get some of my clutter and cleaning done during the summer! But I give myself a finite boundary. Only one shelf of the pantry is getting done at a time, rather than the whole thing, which is what I regularly do. Spending 2 hours on medical receipts and insurance matters did me in on Saturday, but I did get it accomplished! I love to play in the kitchen and with crafts, but for now, my energy has to go into effeciency and simplifying. </span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> Hope I haven't bored you. Again, thank you for your thoughts and prayers, and I hope this reaches out to someone else who it can help.</span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> </span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> </span></strong>Jerseymom3http://www.blogger.com/profile/12456543617837503920noreply@blogger.com0tag:blogger.com,1999:blog-2404988552940568385.post-7466042513736830862010-07-26T09:08:00.000-04:002010-07-26T09:08:45.862-04:00A Way of Life<strong><span style="color: purple; font-family: "Trebuchet MS", sans-serif;"> I am now on week 13 of treatment. Things are settling into somewhat of a groove, and I am trying to establish a pattern of functioning day to day that is compatible with the treatment effects. </span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> My last appointment with the main doctor was good, if not a bit disconcerting. My blood work is going well, and my hemoglobin is back up to 12.2. He states that I am at an 80% level of my "norm", which is a workable number. I haven't been back to the gym since I began treatment, and he gave me permission to begin again at an "easy" pace. Exercise is recommended for a number of reasons, including increased blood circulation to deal with the meds. It's on my list of "to-dos" for this week!</span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> I continue to respond well to the meds, and my viral levels are UD (undetectable). That means it's working! I questioned him about this current treatment in lieu of the fact that I am now officially gen 1a. Should I be holding out for the new drugs?? His advice is to continue this regiment, since I am responding. The new drugs are still a ways away and may be difficult to obtain once they are officially approved. That's the good news.</span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> The "bad" news is, the current ideal recommended length of treatment is now <span style="font-size: large;">72 </span>weeks. That means, if I want to give this my one and only best shot for SVR and know that I have done everything in my power to slay this "dragon" in my system, I will be adding another 24 weeks to the original 48 I signed on for. My face dropped at this news, my daughter looked at me with concern, and when I got home and told my husband, his face visibly dropped also. </span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> It's not something that has to be decided now. I will continue to take it a bit at a time, but the seed has been planted in my thought process. That's why I am trying to take a new approach to this whole thing as a "way of life", versus a limited time of my life. That extra 24 weeks takes me through all of next spring, and all of next summer and on into fall. If I'm going to beat this thing, it has to become a way of life and I still have to function and live each day to the fullest. That's a big thought for me to wrap my head around, and I'm still dealing with it. </span></strong>Jerseymom3http://www.blogger.com/profile/12456543617837503920noreply@blogger.com0tag:blogger.com,1999:blog-2404988552940568385.post-55213575754085105422010-07-11T21:09:00.000-04:002010-07-11T21:09:02.742-04:00Another Year Older.......<strong><span style="color: purple; font-family: "Trebuchet MS", sans-serif;"> It's been a very busy and demanding 2 weeks, and I guess the good news is, I've gotten through it. Finally finished up my school responsibilities last Thursday, July 1, and shifted right into preparation for my oldest daughter and grandson coming to visit the next day. They left this morning, but in the meantime, my younger daughter flew in to surprise me on Friday! She'll be with us until Tuesday evening, and then life will return to quiet and dull for awhile!</span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> Physically, things haven't changed a whole lot. I could actually feel the adrenalin kicking in those last days of school, and I just kept pushing to get it all done. I guess it's good to know that the adrenalin thing is still available, even during treatment, when you really NEED it. My blood work hasn't changed much in weeks, now. I'm maintaining a hemoglobin level of 11, which I give credit to the <span class="goog-spellcheck-word">procrit</span> for. Last time around it plunged to almost 9, and those 2 points are a big difference. I'm a little short of breath, but again, not like the last time. And my skin is dry, but not horrible. Every time I have an itch, though, the fear of "<span class="goog-spellcheck-word" style="background: yellow;">riba</span>-rash" induced by the <span class="goog-spellcheck-word">ribavirin</span> goes through my mind. It is horrible, and I don't want to have to deal with that again. Say a prayer! </span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> This past week was a challenge. With the kids here, I really resent being tired and having to nap. We had a heat wave, with temps up to 102, which actually slowed down our plans. But we made it to the shore twice, went out to dinner twice, and then had a grand birthday week-end with family and friends at the house yesterday! And lots of home and pool time with my 2 year old grandson!! Oh, there was an emergency room visit in there, also, for a breathing treatment for him and a 2 am discharge from the hospital!! More adrenalin at work! </span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> I see the main doctor tomorrow morning for a 12 week check-up. Anxious to hear what he has to say. My viral levels are undetectable, which means the <span class="goog-spellcheck-word" style="background: yellow;">meds</span> are working, and I expect him to tell me we are off to a great start and keep it up. </span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> I anticipate a quiet week with lots of down time and rest to get recharged for the rest of the summer. My appetite has been effected some, although I haven't changed my weight much. My husband is very attentive to my food intake, and without him on my case, I probably wouldn't be as strong as I am. I love fresh fruit/watermelon right now, and Popsicles! I tried one of those milkshakes with extra protein in it, and couldn't get past the first sip. It was like drinking <span class="goog-spellcheck-word" style="background: yellow;">metamucil</span>!! The regular <span class="goog-spellcheck-word" style="background: yellow;">dr</span> suggested protein powder supplement to add to smoothies or shakes, but I haven't tried that yet. The good news is I have lots of extra body "mass" and I'm not going to shrink down to nothing!</span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> Thanks for checking in, and keeping me in your thoughts. Good luck to all of you and each one of those personal struggles that we all have to deal with!!</span></strong>Jerseymom3http://www.blogger.com/profile/12456543617837503920noreply@blogger.com0tag:blogger.com,1999:blog-2404988552940568385.post-61493722474255972932010-06-27T20:51:00.000-04:002010-06-27T20:51:44.938-04:00Status Quo <strong><span style="color: purple; font-family: Trebuchet MS;">Things are pretty much at a status quo right now, which is good. I am actually stronger and feeling better than I expected to at this point, and I attribute that to starting the procrit early, and also to taking a day off work each week.</span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> I am still pretty tired on the week-end, after my shots, and I guess I might be crankier than I think I am. (according to my husband). </span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> Saw the dr on Wednesday and things seem to be going well from his perspective. I discussed a new sleep aid, switching to Nexium from Prevlacid, and changing my shot schedule. I can move the time of my shots by 12 hours each week, to get them more in the middle of the week and then I'll have some quality time on the week-ends for the summer.</span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> CANNOT WAIT TO GET DONE WITH SCHOOL!! 3 more days. I've been operating a lot on adrenaline this last week, and know that I need to crash a day before my daughter and grandson get here for a nice long visit!!! Thanks for checking in!</span></strong>Jerseymom3http://www.blogger.com/profile/12456543617837503920noreply@blogger.com0tag:blogger.com,1999:blog-2404988552940568385.post-70361243088322225112010-06-19T21:49:00.000-04:002010-06-19T21:49:38.830-04:00Lab work is in<strong><span style="color: purple; font-family: "Trebuchet MS", sans-serif;">Well, the confirmation genotype lab work came in this week. Just as suspected, it confirms that I am a gen 1a, not a 3. I'm still wrapping my head around the fact that I endured 6 months of grueling treatment and complications for nothing. It even states right on the first lab results that a gen 3 is typically treated for 24 weeks, but that a gen 1a always requires 48 weeks of treatment!</span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> The good news is the viral load is undetected (UD) at this point, which ups my chances of totally beating this thing. The other up side is now I am considered a first time treater again, since I was not properly treated the first time. Statistically, that also ups my chances of reaching SVR (sustained viral reduction).</span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> Still pretty wiped out from fatigue, but otherwise hanging in there. Did my second shot of procrit last night, but know that it is too early for it to really be kicking in. I'm anxious to see my hemoglobin levels; have sort of lost track of them in the past few weeks. </span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> I still have 8 days of school left, so I'm plodding along with no thought of anything but getting my work finished so I can totally relax and take things at my own pace. Thanks for checking in!!</span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> </span></strong>Jerseymom3http://www.blogger.com/profile/12456543617837503920noreply@blogger.com0tag:blogger.com,1999:blog-2404988552940568385.post-25536015589668338252010-06-13T19:53:00.000-04:002010-06-13T19:53:54.673-04:00Look Out Below!<strong><span style="color: purple; font-family: "Trebuchet MS", sans-serif;"> Well, the crash has happened. I have been more and more tired this week, and that school field trip about did me in, even though I didn't do a whole lot more than facilitate it. But even with more rest, I'm dragging pretty slow this week-end.</span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> The procrit was ordered on Wednesday, and delivered on Friday! Can't get a whole lot better than that!! So Friday evening I did my 2 injections. It has been a struggle to stay awake for more than an hour or 2 at a time, and I just feel totally zoned out. Don't know how long it will take for the procrit to kick in, but it can't be soon enough. </span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> Watermelon has hit the spot right now, and I've eaten about a half one today! And a grilled cheese sandwich! I've been trying to actually think about what I WANT to eat, and that helps my appetite some. </span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> I see the thyroid dr. Wednesday to see how I'm holding up in that area. I won't be surprised if my thyroid counts are responding to the meds too. I thought I'd be real tech savvy and gave the lab my phone number to fax the results of Saturday's blookwork to me. Well, that new 4 in 1 machine still didn't get connected to the phone line, like I had planned, because I was too tired. So the phone rings last night at 2:10 a.m. and startles the heck out of us. I grab it, and there's weird noises, and I hang up. It rings again, and I realize the caller ID says Quest labs. So, I just took it off the hook and went back to sleep. Good thing I did! There were <span style="color: orange;"><em>18 </em></span><span style="color: purple;">missed calls listed on the phone this morning!! </span></span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> That's about it for now. Still haven't had the energy to get back down to the marina and our boat, but we're hoping once I'm done with school that will happen. Thanks to everyone!! </span></strong>Jerseymom3http://www.blogger.com/profile/12456543617837503920noreply@blogger.com0tag:blogger.com,1999:blog-2404988552940568385.post-72336555445863071562010-06-06T18:20:00.000-04:002010-06-06T18:20:14.028-04:00Am I Missing Something??<strong><span style="color: purple; font-family: "Trebuchet MS", sans-serif;"> Do you ever feel like you just have to be knocked upside the head to get the message?? That's where I am right now. Things continue to go wrong, and I am beginning to wonder if I'm just not getting the message I'm supposed to get!</span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> First the good news. MRI came back free and clear and there's no sign of any growths or malignancies. Yeah! And I don't have diabetes! BUT.....I wasn't supposed to be even tested for it. The genotype test from 2 weeks ago got sent in as a diabetes test!!! i.e. human error at the drs. office. So I still don't know what I'm dealing with. <em>And the first viral load test came back inconclusive! </em>i.e. another lab error! What is going on here??</span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> Good news is I changed labs very easily on Saturday, had them all redrawn, and we'll see what happens this week. Turns out my insurance covers all labs, and all I had to do was show up with the paperwork!</span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> My hemogloblin has dropped to 11, so the order went in for Procrit to help build up the iron again. Chances are it will take some time to get that approved, but I like that my dr is being proactive, instead of waiting until it really bottoms out to get started on that. They tell me its not an immediate fix and will take some time to really notice a change.</span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> I'm hanging in there. Finally started feeling a bit stronger on Thursday after a day off, but then had field day on Friday and was just physically wrung out by evening. My big outings this week-end were for blood work and a pedicure, and then the grocery store to pick up milk today! Mostly I sit and look at my back deck and birds, and sleep. I feel guilty not making better use of my time, but I literally don't want to write, read, or even knit. </span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> A friend of Steve's sent us pasta for dinner Friday night, and it was wonderful. I pretty much only want to eat fruit , cereal, and yogurt, but it tasted really good and was nice to come home to. Maybe it is time to take my friends and family up on the offer to send some food in once in awhile. </span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> I did shop for a visual reminder of my treatment progress. This is what I came up with. 2 identical vases with polished river rocks. The one on the left has 6 rocks in it for the 6 shots I've done, and the one on the right has 42 rocks left in it. What do you think??? They remind me not only of the treatment progress, but also of all your prayers and support! Thank you!</span></strong>Jerseymom3http://www.blogger.com/profile/12456543617837503920noreply@blogger.com0tag:blogger.com,1999:blog-2404988552940568385.post-14815883219917451002010-05-30T16:15:00.000-04:002010-05-30T16:15:23.862-04:00First Month Is History <strong><span style="color: purple; font-family: Trebuchet MS;">Things are going pretty much as expected here. Its been 4 full weeks since I began treatment, and I'm really beginning to feel it now. I am very tired, not interested in much, losing my appetite, and pretty lackadaisical. It's a gorgeous Memorial Day week-end, and I've spent most of it bed! </span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> Had an MRI of my liver on Wednesday to keep tabs on any possible malignant developments. I've had <span class="goog-spellcheck-word" style="background: yellow;">MRI's</span> before, but this one seemed particularly cramped and loud. I asked the nurses what accommodations they make for patients who are on the heftier side.....I mean I'm not tiny, but pretty average size when it gets down to it. She said they have machines that are bigger, but if there are really really bigger patients they send them to the Penn veterinarian campus. I thought that was really interesting!</span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> This week's blood work was a biggie!! First test for viral load since I began treatment. Won't hear back for a week or so, but anxious to see that number. Also, I expect the hemoglobin levels to be really down, which would explain my tiredness. They have to crash before I can start the <span class="goog-spellcheck-word" style="background: yellow;">Procrit</span> to build them back up again. I am hoping that once that happens, I'll be able to stabilize a bit for the long term.</span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> Fruit is the only food that I want to eat. I forced down a half of a corned beef sandwich this afternoon, and then enjoyed some watermelon!! It's so ironic for me, who has absolutely loved food her whole life!! I can't tolerate coke or Pepsi now...sends me in to a total indigestion fit. But ginger ale seems to help, and those tiny spice gumdrops help keep the bad taste out of my mouth. </span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> Glad I still have tomorrow off before I go back to work. I still have about 20 days of school left, so summer seems a long way off yet. Happy Memorial Day and take time to stop and thank those who have served our country, and the families of those who have made the ultimate sacrifice. God Bless America</span></strong>Jerseymom3http://www.blogger.com/profile/12456543617837503920noreply@blogger.com0tag:blogger.com,1999:blog-2404988552940568385.post-42342900580153888292010-05-23T20:17:00.000-04:002010-05-23T20:17:30.720-04:00Weekly Update Thank you to everyone who is following my blog! It's cool to come on and see the numbers grow! It also creates a bit of a responsibility for me to get back here and update things!<br />
Had my first treatment dr. appointment in Philly on Thursday. The office is right on Broad Street, 2 blocks north of City Hall, and I kind of smiled to myself as I pulled into the parking garage. Toto, I don't think we're in Muncie/Cowan any more!! Anyway, it's an easy run, and I am so glad I have changed drs. The Physician Assistant follows me, under the guidance of the main dr, who happens to be chief of hepatology and gastroenterology at the university. He was around on Thursday, gave me a big smile, and actually knows who I am and stopped to talk for a minute!<br />
No big medical changes at the appointment. My blood counts are starting to go down, so that explains my increasing fatigue, but things are off to a good start. We drew another blood sample for genotype testing and it was sent to a different lab. I am promised a call as soon as it comes in! We discussed the genotype conflict, and I got an honest to God answer that there is no doubt a lab error involved, it just depends on which end! So all I can do is wait for the new one to come in, and then have some more frank discussions. Best news would be that I am a gen 3, didn't waste the last treatment time, and still made the right decsion to get on with treatment this time.<br />
Friday night I really got zinged with fatigue and had that first deep down to the bone need to crash. Struggled through dinner with my mother-in-law and was in bed within 10 minutes of getting home. I was SO tired, but not necessarily sleepy, so I read for awhile in bed. Saturday I felt better, and we finally got down to the marina to open up our sail boat for the season. I paced myself there, and only did a few necessities, and took a nap on a beach towel on a bare settee for an hour. We grabbed a bite to eat and came back home. I'm glad that the process is begun. I hope to spend lots of time there this summer just resting and hanging out.<br />
The big outing for today was the grocery store! It's so foreign to me to become more dependent on Steve. I had to tell him to slow down and not walk so fast through the store. Food shopping is not nearly as interesting when you really don't care what you eat! I just smile at all the years and years I've done this by myself, in the midst of raising kids, working, running other errands, etc. Anyway, we have some basics in the house again. Cereal with a banana and a strawberry was fine for me for dinner. <br />
My hair has changed over the last week, also. For the record, I have always had very fine, naturally wavy/curly hair with a lot of body to it. Last time I was in treatment I had it cut very short to deal with the loss of hair and I've just kept it that way. Well, now it has become very coarse and straight, almost over night. Not real attractive this minute, and I don't have a hair appointment for another 10 days! Did I tell you the dr said I can continue to have it colored and do whatever I want with it? There was a report on TV that suggested hair dye was hard on the liver, but he said it wasn't proven and not to worry about it. I wasn't sure if I could handle giving up my dirty blonde hair for natural grey right now!<br />
I do have to honestly say that the first wave of depression has hit. That's one of the major side effects of the medications. I'm on an anti-depressant, and will keep a close eye on it to see if we have to tweak it. I was talking to my daughter just to get caught up on things, and all of a sudden I was crying. Poor thing, didn't know what had hit her!! Can't give a rhyme or reason for it, and will try really hard to boost myself up with prayer and positive thoughts. "Skyping" with our grandson has been great therapy, and I know his mom/my other daughter, goes out of her way to arrange for our little visits to cheer me up! There's nothing like seeing him run across the room to demonstrate his new sneakers to bring a smile to my face!! It's such a blessing to be living in this age of technology!!!<br />
Jerseymom3http://www.blogger.com/profile/12456543617837503920noreply@blogger.com1tag:blogger.com,1999:blog-2404988552940568385.post-83452634813760959622010-05-16T21:34:00.000-04:002010-05-16T21:34:25.109-04:00How Am I Feeling? <strong><span style="color: purple; font-family: "Trebuchet MS", sans-serif;">I haven't said too much about how I am actually feeling, so here is a quick update. So far, so good. I did my 3rd shot Friday night, and take 1200 mg of ribivirin a day, and right now it's not too bad. I get tired, especially on the week-ends after the shot, and try to program in a good 3 hour nap on Saturday and Sunday. And this week I started taking time off work in the middle of the week to rest. But I haven't changed much about my general lifestyle yet.</span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> I'm on a permanent stomach med (prevacid??) to deal with the severe indigestion, and sometimes I'm hungry and sometimes I'm not. Not a big deal right now. </span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> I did have a bit of a scare Thursday. Apparently I broke a blood vessel in my eye, and it was red, but by Thursday evening looked like something from a Freddie Kougar movie!! I took Friday off to check it out, and it turned out to be no big deal. Eye involvement is one of the drug reactions they tell you to look out for, so I wanted to be sure this was nothing important.</span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> Anyway, I'm hanging in there, and have my first dr appt on treatment Thursday. My blood work is strong, and I'm feeling okay!!</span></strong>Jerseymom3http://www.blogger.com/profile/12456543617837503920noreply@blogger.com1tag:blogger.com,1999:blog-2404988552940568385.post-14095925950679391822010-05-15T20:00:00.001-04:002010-05-15T20:06:20.118-04:00Bring On The Drama<strong><span style="color: purple; font-family: "Trebuchet MS", sans-serif;"> HCV is subgrouped into 4/5 genotypes, each with their own quirks and profiles, if you will. I became familiar with this in the first go round with treatment. Gen 3 is less prominent in western countries, but has a higher percentage of SVR (sustained viral responsed) in treatment and in the world of HCV, a pretty good call. SVR for gen 3's is about 80% on the first try, and most importantly, generally only treated for 24 weeks. Needless to say, I was disappointed and bummed out when my viral count came back up 6 weeks after finishing the first treatment.</span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> <em>Here comes the drama part: </em>Routine baseline blood work came back this week, and just by chance, the new doctor ordered another genotype test. <span style="color: #990000;">This time I'm a gen 1a </span><span style="color: purple;">This isn't supposed to happen, my friends. It's like getting a change in your blood type 2 years later. </span></span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> I put out a post on my HCV forums to see if anyone has heard of this. A couple of people replied that it theoretically could happen if the original blood transfusion had both types in it, and maybe they heard of someone else 3rd hand that this had happened to. My current dr put it out to the university hospital hepatology group, and not one of them had heard of such a thing. So here are the implications.....</span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> If I'm gen 1a, there's no way that the initial 24 weeks of treatment would have been successful. I basically wasted that whole time. I began treatment this time assuming I'm a gen 3, and the new drugs on the horizon are basically aimed at 1a, so there was no point in waiting for them. If I'm a 1a, I might have made the decision to wait another year or so for the new drugs. But now, I've already started the meds. 48 weeks is the recommended treatment for gen 3 on retreatment, but gen 1a's are sometimes stretched out to even 72 weeks on retreatment. Ugh!! </span></strong><br />
<strong><span style="color: purple; font-family: Trebuchet MS;"> Another test is necessary for my own peace of mind, even though the meds at this point are the same. I've decided to have it done at the university hospital where my dr is instead of my usual lab. Sounds suspiciously like a lab error to me, how about you? And that is just plain scary. It could be a lot worse.....lots of other incorrect lab tests could be disastrous to patients. But it sure does take away a lot of the trust and confidence in what is supposed to be cut and dried scientific lab data. I'm the one who picked it up out of the report, btw. Tiny little print on a computer screen just went right past the drs initial review. Once again I proclaim to the world "YOU HAVE TO BE YOUR OWN ADVOCATE AND ON TOP OF YOUR OWN CASE!" </span></strong>Jerseymom3http://www.blogger.com/profile/12456543617837503920noreply@blogger.com0tag:blogger.com,1999:blog-2404988552940568385.post-53821484941165692692010-05-09T21:45:00.000-04:002010-05-09T21:45:29.779-04:00Waiting for the pounce<strong><span style="color: #4c1130; font-family: "Trebuchet MS", sans-serif;">It's been a good week, all things considered. Worked all 5 days, even had after school stuff a couple of nights, and getting a good night's sleep. We even took a spontaneous week-end trip to Virginia to catch up with old friends! I figured we'd better do it now, while I'm feeling this strong, just in case..... I still got my Saturday long nap in, and managed to last longer into the evening than I expected!!</span></strong><br />
<strong><span style="color: #4c1130; font-family: Trebuchet MS;"> One of the major side effects is the anemia induced by it. Since I have increased the ribivirin by 50%, it would be naive of me to think I can escape that. My hemoglobin plunged last time and I was worn out. It is reported that many are effected by the 3rd week, so I'm sort of waiting for the pounce. Although I'm tired now, I can still function, especially after a good nap. When the blood counts drop, it's a whole new kind of tired. Pro-crit, which boosts hemoglobin, will most likely be ordered, and then I can begin to figure out more of a long-term balancing act. </span></strong><br />
<strong><span style="color: #4c1130; font-family: Trebuchet MS;"> There's some heartburn beginning, but again, not horrible. We stopped at a McDonald's today for ice cream or shakes, only to be told 5 minutes later that the machine was out of order! And do you realize there's NEVER a good old basic custard stand when you really want one? We took the back-road, Rt. 40, home from Baltimore, and it's just good old Americana. But it seems that tattoo parlors have replaced Dairy Queens at an alarming pace, and we finally got ice cream at home here in South Jersey!!</span></strong><br />
<strong><span style="color: #4c1130; font-family: Trebuchet MS;"> It's Mothers Day, and I realize how much I miss my own mother after 8 years. Wish I could talk to her now about her own illness and how she managed to keep her spirits up for others with such grace. My 3 kids all called, and a gift of new pajamas was right on target!! </span></strong><br />
<strong><span style="color: #4c1130; font-family: Trebuchet MS;"> Would love to get some comments back on my postings. How am I doing?? Too wordy?? More technical stuff? </span></strong>Jerseymom3http://www.blogger.com/profile/12456543617837503920noreply@blogger.com3tag:blogger.com,1999:blog-2404988552940568385.post-10113116048210325092010-05-05T20:39:00.000-04:002010-05-05T20:39:59.819-04:00So Far, So Good<span style="color: #4c1130; font-family: "Trebuchet MS", sans-serif;"><strong>I'm at Day #5 of my journey, and so far, so good. I'm trying to take one day at a time, and I'd love to really believe this is how it will be the whole way down the road! I was able to go out Saturday evening to a family birthday dinner after purposely taking it easy on the first day. But Sunday I woke up feeling great; went to the gym, bought some flowers for my deck, and picked up a few things at the grocery store!! </strong></span><br />
<span style="color: #4c1130; font-family: "Trebuchet MS", sans-serif;"><strong> Today, Wednesday, is the first time I really felt it at work. The afternoon was tough because I was really tired, but I managed to stay for a faculty meeting, and then took a nap when I got home. A bit of nausea, and not much appetite.</strong></span><br />
<span style="color: #4c1130; font-family: "Trebuchet MS", sans-serif;"><strong> Have I mentioned what a ground hog I am?? For at least the last 3 months I was on a total eating binge! I chalked it up to nerves and anxiety, and the knowledge that soon nothing was really going to taste good. So I had been eating absolutely anything I wanted, and began to feel like a groundhog plumping up for the winter. Consequently, there are extra pounds here that will keep me going for awhile, even with a loss of appetite. I read on a chat line about some other people having the same reaction; I doubt that it is unique.</strong></span><br />
<span style="color: #4c1130; font-family: "Trebuchet MS", sans-serif;"><strong> Blood work tomorrow. I had a baseline drawn last week, so this will be the first comparison sample. An online friend of mine undergoing a second time treatment reported that it didn't hit her hard until the third week of treatment. Say a prayer for me, maybe I won't get hit as badly!</strong></span> Jerseymom3http://www.blogger.com/profile/12456543617837503920noreply@blogger.com0tag:blogger.com,1999:blog-2404988552940568385.post-78667559674557172182010-05-01T16:30:00.000-04:002010-05-01T16:30:17.410-04:001 Down 47 To Go<span style="color: purple;"><strong>May 1, 2010 Last night I began my treatment protocol. Took a Ribasphere after dinner, and waited for the shot until I was ready to go to sleep. It's amazing how easily it all came back; shaking the vial, attaching the needle, picking out a site, etc. Steve was a tower of strength, and got it all ready for me, but I still like to do the injection myself.</strong></span><br />
<span style="color: purple;"><strong> I had a good night's sleep, and woke up feeling groggy. But, ask my family, I am not a morning person on the best of days! I have taken it easy all day, took a 3 hour nap at noon, and actually went on an outing alone in my car to pick up dry cleaning! After several cups of coffee, I switched to water. At least 80 oz is recommended for me a day! It will take me a while to work up to that, but I am definitely thirsty and dry. </strong></span><br />
<span style="color: purple;"><strong> I'm now trying to make a decision about attending a birthday party this evening. I really want to go and proved to myself that I won't let this get me down, but there's a part of me that wants to stay home. I have another hour to make a decision!</strong></span><br />
<span style="color: purple;"><strong> Thank you to everyone who has offered good wished on my blog! I am flattered that so many checked it out as soon as I shared the address! I'm working on a counter for viewers, but haven't figured out the tech part of that yet!</strong></span>Jerseymom3http://www.blogger.com/profile/12456543617837503920noreply@blogger.com0tag:blogger.com,1999:blog-2404988552940568385.post-82643439499315582482010-04-28T07:26:00.000-04:002010-04-29T21:45:37.896-04:00Let's Get Started<strong>May 1973</strong> It seems most likely that I contracted <span id="SPELLING_ERROR_0" class="blsp-spelling-error">HCV</span> (Hepatitis C Virus) from a blood transfusion after a major car accident. I had no inkling of anything until the late 1980's, when usual blood work kept coming back with elevated liver functions. I questioned those, and new testing evolved which led to the identification of <span id="SPELLING_ERROR_1" class="blsp-spelling-error">HCV</span> about <strong>1992</strong>. I was feeling fine, leading a very busy life, and I just put the whole thing on the <span id="SPELLING_ERROR_2" class="blsp-spelling-corrected">back burner</span>.<br />My doctors kept pointing out to me that eventually I would have to deal with it, but I chose to ignore it for a few more years. There was never a good time for me to be "sick"or out of commission. I finally had my first liver biopsy in 2001, which showed minimal involvement; stage 1, grade 1. I was advised to keep an eye on it, and to be gentle on my liver.<br /><strong>October 2007</strong> My gallbladder flared up and I ended up in the hospital for almost a week, where I had a full work-up for anything and everything. Turned out I had Graves Disease, (hypothyroidism), along with gall stones. Had that surgery in January of 2008, and a second liver biopsy while they were "in" there. That biopsy showed significant change: grade 2, stage 3. And I was 57 1/2, still a prime age to treat.<br /><strong>September 2008 </strong>I began treatment with a combination of <span id="SPELLING_ERROR_3" class="blsp-spelling-error">Pegasys ( pegalated interferon)</span> and <span id="SPELLING_ERROR_4" class="blsp-spelling-error">Ribivirin</span>. It knocked me for a loop, with lots of side effects, but I did manage to continue working. Teaching preschoolers all day is demanding; not many chances to stop and catch your breath or take it easy. So even though I thought I had had a rough time, in retrospect, I guess I still plugged along. I was termed a "rapid responder" The virus was not detectable withing the first month of treatment!<br /><strong>March 13, 2009 </strong>ended 24 weeks <span id="SPELLING_ERROR_5" class="blsp-spelling-error">tx (treatments) </span>and I celebrated. But within 6 weeks I noticed some symptoms coming back. I had some pain in my right mid back, was short of breath, and really fatigued again. For some strange reason, I wasn't surprised when the call came in June that the virus had returned.<br /><strong>November 2009 </strong>I sought a second opinion on treatment from a specialist in <span id="SPELLING_ERROR_6" class="blsp-spelling-error">Philadelphia</span>. I was hoping I could squeeze in to a clinical study, but they were already under way. He recommended I try treatment again, for a longer duration this time, with basically the same drugs. NO hurry, other than I wasn't getting any younger and my liver was probably undergoing more rapid demise, due to the gen 3 type.<br /><strong>January 2010</strong>, after the holidays, I seriously began the road to re-treatment. I will cover my thoughts,reasoning, etc. in a separate entry. My youngest daughter actually made perfect sense when she said "Mom, even if it doesn't work, and even if you do get sicker on down the road, you will know in your heart of hearts that you did everything you could to get rid of it". Despite high quality health insurance and living in an urban setting with wonderful health resources, I juggled phone calls, contradicting information, postponed arrangements, etc. etc. etc. I couldn't begin this journey with any doubts, non-answered questions, or hesitation in my resolution to try it again. It's been a bumpy road, but finally the 2<span id="SPELLING_ERROR_7" class="blsp-spelling-error">nd</span> round of my journey is about to begin.<br /><strong>April 29, 2010</strong> The medications were delivered today, and tomorrow evening is the first shot and pill. I've been ready to start for about 5 weeks, so this is almost anti-climatic. I'm at peace with my decision to give it another shot (pardon the pun) and realize that although it will be hard, I am feeling relatively good, have some energy, and not getting any younger.<br />I had blood drawn this morning for a baseline comparison. Took 3 attempts to get all 7 vials that they needed! I will try not to bore you with too many numbers, but will post some of them to use as a reference point along the way. I also will share with you some of the research and resources that I have found most helpful. I <span id="SPELLING_ERROR_8" class="blsp-spelling-corrected">truly</span> hope that this blog will help someone else who is dealing with the same situation, as well as serving as point of reference for my friends and family who care about me and hate to call or "bother" me.<br />Here we go!! I see sunshine and peace at the end of this long road.Jerseymom3http://www.blogger.com/profile/12456543617837503920noreply@blogger.com0tag:blogger.com,1999:blog-2404988552940568385.post-61960259225559866002010-04-20T21:54:00.000-04:002010-04-20T22:11:15.293-04:00<strong><span style="color:#330033;">Site under construction. Please check back soon!</span></strong>Jerseymom3http://www.blogger.com/profile/12456543617837503920noreply@blogger.com0