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.
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.
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!!
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!
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.
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.
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.
Monday, July 26, 2010
A Way of Life
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.
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!
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.
The "bad" news is, the current ideal recommended length of treatment is now 72 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.
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.
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!
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.
The "bad" news is, the current ideal recommended length of treatment is now 72 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.
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.
Sunday, July 11, 2010
Another Year Older.......
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!
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 procrit 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 "riba-rash" induced by the ribavirin goes through my mind. It is horrible, and I don't want to have to deal with that again. Say a prayer!
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!
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 meds are working, and I expect him to tell me we are off to a great start and keep it up.
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 metamucil!! The regular dr 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!
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!!
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 procrit 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 "riba-rash" induced by the ribavirin goes through my mind. It is horrible, and I don't want to have to deal with that again. Say a prayer!
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!
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 meds are working, and I expect him to tell me we are off to a great start and keep it up.
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 metamucil!! The regular dr 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!
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!!
Sunday, June 27, 2010
Status Quo
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.
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).
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.
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!
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).
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.
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!
Saturday, June 19, 2010
Lab work is in
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!
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).
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.
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!!
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).
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.
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!!
Sunday, June 13, 2010
Look Out Below!
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.
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.
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.
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 18 missed calls listed on the phone this morning!!
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!!
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.
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.
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 18 missed calls listed on the phone this morning!!
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!!
Sunday, June 6, 2010
Am I Missing Something??
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!
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. And the first viral load test came back inconclusive! i.e. another lab error! What is going on here??
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!
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.
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.
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.
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!
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. And the first viral load test came back inconclusive! i.e. another lab error! What is going on here??
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!
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.
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.
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.
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!
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