Well, here we are at Week 11 of 48, with side effects of extreme fatigue, weakness, nausea and vomiting, along with a small spot of pnumonia on my left lung. The antibiotics are working, but they are adding to the weakness and fatigue.
I honestly do not know how I am going to go through this for another 37 weeks.
Wednesday, January 21, 2009
Saturday, November 15, 2008
The Beat Goes On
Thursday was my second shot. This one was different in that I didn't run the really high fever at all that night. No, it waited until Friday. All day on Friday, I stayed in bed. I had all three cats on me, equally about 306 degrees F coupled with my own 104 degrees F. I was the hottest spot in the house and let's face it, we all know cats aren't stupid. They knew where the heat was. Oh I got up every now and again to get something to drink, do the necessaries and all that, but mostly, I slept the day away. I'll hope to be feeling better tomorrow because today was a really slack off and do nothing day. I can't afford that luxury.
Sunday, November 9, 2008
And So It Begins
On Thursday, November 6th, I took my first doses of the new treatment medications. I do not rmember from the first round, but this one hit me hard and fast. I took my shot and pills at 3:45 PM and by 9:30 PM I was running a very high fever and shivering as though cold blood was running through my veins.
Friday morning, I awoke around 4:30AM, soaking wet and very, very ill. I was so muscle-sore I could barely move.
Saturday morning was much better, but I went back to bed and slept the rest of the day. Saturday night, I felt almost human again.
Today has been a mix of tired and nauseated.
The plans for the evening, since Hubby had to go into work on overtime tonight, are to clean the two litterboxes and run the vacuum cleaner. Hopefully, after those things are done, I will still have enough energy to clean up the sink and do some laundry.
And so it begins.
Friday morning, I awoke around 4:30AM, soaking wet and very, very ill. I was so muscle-sore I could barely move.
Saturday morning was much better, but I went back to bed and slept the rest of the day. Saturday night, I felt almost human again.
Today has been a mix of tired and nauseated.
The plans for the evening, since Hubby had to go into work on overtime tonight, are to clean the two litterboxes and run the vacuum cleaner. Hopefully, after those things are done, I will still have enough energy to clean up the sink and do some laundry.
And so it begins.
Wednesday, October 29, 2008
Here We Go, Ready or Not!!
All of the dignostics came back within the required parameters for the trial and I am in. I go to my first appointment to learn how to take the drugs on Wednesday, November 5th.
And the anxiety is kicking in fulltime.
And the anxiety is kicking in fulltime.
Remembering to Breathe
I learned that all the program materials are in, I am to receive a call to make an appointment to get all of the required paperwork started, then, if it goes anything like last time, I'll start the pre-screening diagnostic testing. So, it looks like I'll be back on treatment somewhere around the end of October to the early part of November. *sigh*
For some reason, this is giving me a great deal of anxiety. I am not treatment-naive, I know how it will be. But as much as I want to "get better", I am not looking forward to doing what it takes to get there.
We went to my husband's 30th High School Reunion. I would have rather taken a severe beating than attend, but I wentanyway. I had to buy clothes because nothing I have that would be appropriate for the event AND the expected weather fit me properly. It had been raining all day and all night long for three days. I had to get something with long sleeves because it is chilly now, especially on a rainy evening and I had to buy shoes because the strappy little sandals I was planning to wear weren't going to work in the rain. I found a cute moss green twin set that looks nice with my black pants and I wore my grandmother's pearls. I found a dark corner to hide in and waited until other non-school-related spouses and significant others gathered along with me. It was boring and honestly, while I am happy my husband had a nice time, I would have rather stayed home and done some knitting.
For some reason, this is giving me a great deal of anxiety. I am not treatment-naive, I know how it will be. But as much as I want to "get better", I am not looking forward to doing what it takes to get there.
We went to my husband's 30th High School Reunion. I would have rather taken a severe beating than attend, but I wentanyway. I had to buy clothes because nothing I have that would be appropriate for the event AND the expected weather fit me properly. It had been raining all day and all night long for three days. I had to get something with long sleeves because it is chilly now, especially on a rainy evening and I had to buy shoes because the strappy little sandals I was planning to wear weren't going to work in the rain. I found a cute moss green twin set that looks nice with my black pants and I wore my grandmother's pearls. I found a dark corner to hide in and waited until other non-school-related spouses and significant others gathered along with me. It was boring and honestly, while I am happy my husband had a nice time, I would have rather stayed home and done some knitting.
Stressed and Scared, But Coping
I went back over to the Veteran's Administration Hospital for my six-months-off-treatment follow up appointment. The wonderfully fun activities planned for the day included such lovely things as blood and urine collection upon arrival, after which we took a brief break with cookies and Apple Juice provided, staring at the Hepatitis C posters on the walls, then going into a meeting with the new program coordinator, Marshall, who has just returned from the conference about the new Schering-Plough trial ... and a great time was had by all. *smile*
I have learned that the new drug I will be adding to my "cocktail" is called Boceprevir which is a protease inhibitor. (An anti-viral drug that blocks the action of the enzyme protease, which is needed for viral replication. In plain English, it attacks and kills the stuff that the virus needs to survive.) I have been doing a bit of research on this drug (my Google-Fu is strong, Grasshopper) and the side effects are about the same as the standard treatment protocol I have already completed ... except for the itchy skin rash. "They" say that won't be as bad, but the nausea and vomiting may be worse than before. Lovely. Just what I need, more nausea.
I have been stress-cleaning all day everyday lately, making a lot of progress in so much as I do not want to have "big" cleaning to do while I am back on treatment. The fatigue prevents me from even doing basic chores some days, so I have to make it as easy as I can both on myself and on my husband ... *sigh* ... who works 12 hours a day, 6 days a week then has to come home and take care of everything here. Bless his heart. I feel so guilty about that.
I have learned that the new drug I will be adding to my "cocktail" is called Boceprevir which is a protease inhibitor. (An anti-viral drug that blocks the action of the enzyme protease, which is needed for viral replication. In plain English, it attacks and kills the stuff that the virus needs to survive.) I have been doing a bit of research on this drug (my Google-Fu is strong, Grasshopper) and the side effects are about the same as the standard treatment protocol I have already completed ... except for the itchy skin rash. "They" say that won't be as bad, but the nausea and vomiting may be worse than before. Lovely. Just what I need, more nausea.
I have been stress-cleaning all day everyday lately, making a lot of progress in so much as I do not want to have "big" cleaning to do while I am back on treatment. The fatigue prevents me from even doing basic chores some days, so I have to make it as easy as I can both on myself and on my husband ... *sigh* ... who works 12 hours a day, 6 days a week then has to come home and take care of everything here. Bless his heart. I feel so guilty about that.
A Little Bit of History
Roll back to just before the Christmas holidays in 2006 ... I was to host a family Christmas gathering which would bring nearly 150 people through my home for dinner, gifts and dessert. I was so tired but still I kept working feverishly to get the house in order, do a lot of the cooking and make sure everyone who was coming would have something in the way of a gift to open.
Exactly three days before the date of the big family party, I woke up with a fever of 104 and was quite ill, coughing, sneezing and generally sore all over. Since I knew I had to be well for the party, I went straight to the doctor. My normal doctor had taken the week of the holidays off for his vacation so I agreed to see the new doctor in the practise and how glad I am now that this appointment was made!
Dr. Moon asked me about the normal stuff and took blood. The day of the party, he called me and informed me that my blood chemistry showed a very, very low thyroid and very high liver enzymes. He asked me to return to give him more blood. I did so and on the Wednesday between Christmas and New Year's Day, he called me to inform me that I tested positive for "HCV antibodies". I will never, ever forget my response to hearing this ... "Oh my God!", I said, "What exactly ~is~ HCV?"
My education into Hepatitis C began on the Internet, reading everything I could about the virus and how it affects the body. The more I read the more despondant I became. I read about how it slowly kills the liver over time and that it is the leading cause of liver cancer/transplant in the United States. I learned that there is no cure, only a hideous treatment which may, or may not as the case may more accurately be, slow the progression of the virus in order to give the liver a chance to regenerate and become more healthy. And I grieved for the loss of life the way I had come to know it ... everything was about to change and not so much for the better for me and for my husband, who somehow miraculously tested negative for the virus.
In the Spring of 2007, I began what they affectionately refer to as "combo-therapy", which is a treatment much like chemotherapy and lasts for 48 weeks. I took 6 very large pink pills called Ribavirin every morning and night and once a week, my husband administered a sub-cutaneous injection of peglated interferon into my stomach area or upper thigh. Instantly, I began feeling the side effects; extremely high fevers, joint pain the likes of which I never experienced before and oh my God, the nausea!! My sister-in-law Lisa told her mother of my issues with keeping food down and bless her heart, Anne (Lisa's mother) baked me a home-made pound cake ... it was the only thing I kept down for weeks. I lost nearly 50 pounds and most of my hair. Then, about two months into the treatment, my blood platelet levels dropped dangerously and I started to bleed. I bled from every orafice in my body, including my eyes. I literally cried tears of blood. And I kept bleeding until I thought I was going to bleed out. They gave me blood-building drugs, they hospitalized me for IV fluids, they wanted to give me a transfusion, but I resisted. So they had to reduce my dose of therapy and 8 weeks before treatment was over, I learned that my virus had returned with a vengance. I completed the treatment anyway and knew that in six months, I would have to do it all over again.
Fast forward to today, when I learned that I have been accepted into a new clinical trial for treatment of HCV with PegIntron, Ribavirin and something called Boceprevir. I am to start the screening process for this new therapy sometime in mid-September with the hopes of beginning treatment in early October. The hope for me on this new treatment and new drugs is to achieve a sustained virologic response (an "acceptably low" amount of virus in my blood) and remission once I am finished. It is another 48 weeks long and the side effects will be similar to the first round of treatment, but I am looking forward to it. Even though I know I will feel awful, it will be a different kind of awful than I feel now if that makes any sense at all.
So, for now, we wait and see.
Exactly three days before the date of the big family party, I woke up with a fever of 104 and was quite ill, coughing, sneezing and generally sore all over. Since I knew I had to be well for the party, I went straight to the doctor. My normal doctor had taken the week of the holidays off for his vacation so I agreed to see the new doctor in the practise and how glad I am now that this appointment was made!
Dr. Moon asked me about the normal stuff and took blood. The day of the party, he called me and informed me that my blood chemistry showed a very, very low thyroid and very high liver enzymes. He asked me to return to give him more blood. I did so and on the Wednesday between Christmas and New Year's Day, he called me to inform me that I tested positive for "HCV antibodies". I will never, ever forget my response to hearing this ... "Oh my God!", I said, "What exactly ~is~ HCV?"
My education into Hepatitis C began on the Internet, reading everything I could about the virus and how it affects the body. The more I read the more despondant I became. I read about how it slowly kills the liver over time and that it is the leading cause of liver cancer/transplant in the United States. I learned that there is no cure, only a hideous treatment which may, or may not as the case may more accurately be, slow the progression of the virus in order to give the liver a chance to regenerate and become more healthy. And I grieved for the loss of life the way I had come to know it ... everything was about to change and not so much for the better for me and for my husband, who somehow miraculously tested negative for the virus.
In the Spring of 2007, I began what they affectionately refer to as "combo-therapy", which is a treatment much like chemotherapy and lasts for 48 weeks. I took 6 very large pink pills called Ribavirin every morning and night and once a week, my husband administered a sub-cutaneous injection of peglated interferon into my stomach area or upper thigh. Instantly, I began feeling the side effects; extremely high fevers, joint pain the likes of which I never experienced before and oh my God, the nausea!! My sister-in-law Lisa told her mother of my issues with keeping food down and bless her heart, Anne (Lisa's mother) baked me a home-made pound cake ... it was the only thing I kept down for weeks. I lost nearly 50 pounds and most of my hair. Then, about two months into the treatment, my blood platelet levels dropped dangerously and I started to bleed. I bled from every orafice in my body, including my eyes. I literally cried tears of blood. And I kept bleeding until I thought I was going to bleed out. They gave me blood-building drugs, they hospitalized me for IV fluids, they wanted to give me a transfusion, but I resisted. So they had to reduce my dose of therapy and 8 weeks before treatment was over, I learned that my virus had returned with a vengance. I completed the treatment anyway and knew that in six months, I would have to do it all over again.
Fast forward to today, when I learned that I have been accepted into a new clinical trial for treatment of HCV with PegIntron, Ribavirin and something called Boceprevir. I am to start the screening process for this new therapy sometime in mid-September with the hopes of beginning treatment in early October. The hope for me on this new treatment and new drugs is to achieve a sustained virologic response (an "acceptably low" amount of virus in my blood) and remission once I am finished. It is another 48 weeks long and the side effects will be similar to the first round of treatment, but I am looking forward to it. Even though I know I will feel awful, it will be a different kind of awful than I feel now if that makes any sense at all.
So, for now, we wait and see.
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