Week # 14

11:46 AM

Wow, sorry it's been so long. I have been using every ounce of energy to win this battle. The side effects really kicked in by week 8. I can't type a full thought in one sentence without going off track. Does that make sense? I can stare at the computer screen for hours.

  Around week   12, I hit a new low.  Nausea, headache ,vomiting, rapid heart rate,  back pain, joint pain, blurred vision you name it, it hurts.  I spent my second & final 12 hour stay in research yesterday. What a long painful day. I was dehydrated, so blood had to be 'DRAWN', literally. It was between 25-30 syringes taken over a 12 hour period. I vomited  twice there. Dr. Jen says my tests look good with the exception of the liver.

 AST -215 ALT-120.

Both these #'s should be below 47.

They have been coming down the last 3 draws so I am not too concerned with this. Dr Jen's first question " have you considered quitting?" "Yes," I replied .I have a couple times. Then I dismiss the thought. She then explains that because I was an RVR and considering the side effects, it's conceivable at this to consider 24 week Tx instead of going the 48. My cure rate will go from 97% to 81%. If I do only 24 weeks & I relapse…there is a promising new drug due out this summer. In 3-6 months results have been promising. I agreed to consider this, though, I believe that I should go the distance here, as long as health permits it. I can't cop out as long as I have the Lord on my side. I feel strong about my will to survive .My desire to  conquer  this dragon. As long as I keep this mindset, I can't go wrong.

 I am concerned however that  I can barely stand 5 mins without getting dizzy. My heart rate goes right up . Last night, just walking up 3 flights of stairs, I was in the bathroom gagging. I felt as though I would pass out. Every time I stood up I got dizzy. Later, I'm sitting in a chair when my lower abdomen started to burn. I stood up and said "I don't like the way I feel." Wayne stated, I hit the wall & fell in my bedroom doorway. I was babbling incoherently. I came to, throwing up as he was caring me to the toilet. He put a cold towel on my head & brought me through, what ever that was .I felt better after that. My poor Wayne was a nervous wreck. I will call Dr. Monica on Monday.

So, today is Wayne's birthday. He had to work:( I managed to bake some brownies….that's all…brownies.  Hey, I'm impressed I was able to do that & type this much. Take note at the time I began at the top. It is now nearing 1:oopm. Please forgive any brain fog that may have distorted my thoughts and/or words. I will try to come here more often

      Peace

Week # 8

I have to apologize for not blogging the last 2 weeks.  I have no desire to type, just think. I have not come out of this 'funk' for 2 weeks. Last night was shot # 8 and I was disappointed that I was unable to 'prepare' as I have in the weeks before. It is my understanding that this is 'normal' for this stage in treatment. It's scary to also know that just as I become use to feeling this way(a few short weeks) I will hit another low. Lower than this, really ? S**T !

         Physically, I am drained. I understand, that my body is using every ounce of energy to fight this. So I am compliant in allowing it to. I am doing much of nothing, but feeling the symptoms. Mentally & emotionally, I am still strong. Spiritually, God tells me I can do this. 40 weeks to go is a looonng time ! Yes, it's still worth it. I will fight this dragon with every breathe I take ! I will win !

Notes while I've been down

Friday, Oct. 29, 2010

6th week-felt good day after. Fri. & Sat. useless. Achy, allergic, no energy. Sun. & Mon. blurred vision, no desire for comp. cleaned a lot, slowly but steady.

7th week- Thurs. & Fri. both reaction days. Still trying to stay active, is hard. Drained at the least effort. Sore throat, dry mouth, stuffy nose ,diarrhea  is prominent  2nd day after. Mentally, thoughts are zipping by. Can't stay focused for too long on any one thing. Again, no desire to use computer.

Today is Tuesday November 2, 2010.

Tomorrow is shot day & I have not yet bounced back from the last two.

 I fell achy,, sore throat, headache, cough and nausea are the worst. Very tired. Chest & stomach muscles ache due to cough & nausea. Skin is very dry. Using Cortisone 10 cream on the ankle & baby oil during bath, air dry. Feeling better  with those. Tired of blowing my nose & breathing through my mouth.

Week # 6

 6 down, 42 to go ! It doesn't hurt at all anymore. About a  1/2 hour after the shot, I felt 'brain fog'.  Took my meds to help sleep and off to bed.  I woke up at 4:00 a.m. I  had a peaceful night, other than  a little coughing. Today, I am tired. That's 'normal' these days. Itchy eyes, tender  throat, nasal congestion. No worse then any other shot. I felt  weakness / pain in my legs, easing up now. Of course, I am sitting on my bottom, relaxing  :-) Otherwise, the side effects (sx) haven't  gotten any worse. I do understand that at any time this may change. I will keep my positive attitude that it may NOT. My gums still hurt. I think I have gingivitis. It was probably there, and the meds have excelled the process. Dental problems are NOT mentioned in the sx. I did however learn from others, this is 'common' with these meds. The doctors are oblivious ! Or at least they pretend to be. I do know that I am at risk for infection with this going on. . My understanding is that infection could lead to taking a break from the meds. For me, this could jeopardize Tx completely. Because this is a clinical study, once you stop, I believe your OUT ! I called MCPN's dental clinic last Friday and again on Wednesday, left messages and no call back yet ! If I have to wait much longer, Wayne says he will take me to a dentist and pay the cost to make sure I get care. I carry this mental burden, that this poor man is going broke caring for me ! I know he loves me, but, he didn't say for better or for worse. And he is getting the worse !

     I was talking with a good friend (Penny) yesterday for hours, lol ! She pointed out to me that I have not posted enough here about the HCV and how it's effecting me. I agree, and it's nice to know that people ARE interested. We came to the conclusion I had been posting like it was Facebook. Only 420 characters allowed ! So I have been working on the blog today. Moving things around, creating separate pages, etc. I certainly appreciate any input you may have. Constructive criticism.. accepted gracefully, changes..considered.  I am still new to this.

    I would like to mention now, about support. My family & friends have ALWAYS been supportive. Through this, even more so. But, it is very hard for anyone to fully understand one's physical, emotional & mental state unless you have experienced it first hand. Whatever the illness.  So, right about the time I started this blog & treatment(Tx), I joined 2  support groups online. HCV Support and HepC Nomads. I can never  fully express my gratitude to these people. They are like family. Many have had this for 20+ years, treated successfully, are going through it or about to, are waiting for new treatments and non responders. All give great first hand experience and advice. I have learned much more from these wonderful people than all the doctors put together ! I'm not sure I could get through 48 weeks of  Tx with out all the beautiful people in my life. Thank you ALL & May God Bless you !

 

More posts to come

Labs are back !

 I got my labs back on Monday. The virus is undetectable !  I realize I still have a long way to go, but the VL being UND at 4 weeks means I am a rapid responder(RVR). This increases my odds for destroying this virus. I am so happy. Now the sides are more tolerable :) Meds every twelve hours, shot on time, drinking the water & eating right. My mental state is more intact then ever…scary, but nice.

        I'm early this week & late with those results, sorry. I do shot #6 tomorrow. 42 to go !  I really do feel pretty good. Sleeping every night, another odd occurrence for me. Tired throughout the day. Cough has eased up & the other sides too. I'm feeling quite blessed these days. For now, it's late. Need to rest. God Bless.

WEEK # 5

Well, Wednesday I went for my blood draw. I have been drinking the minimum 1 gallon of water per day. It paid off BIG time ! My vein popped right up & flowed freely. This was an important draw for they not only check WBC, RBC, AST, ALT, etc. They also checked the VL.   5 weeks ago the VL was 1,800,000. I am praying for a lower #. That means the meds are killing the virus ! I'll know the results next week. My next visit will be the 2nd 12 hour stay, in  4-6 weeks.

So ,I gave myself Shot 5 that night.Giving the shot to myself is getting easier. Sides didn't bother me as much. I slept 6 hours. Thursday a.m. wasn't bad, just tired. Buy later that day I began feeling very drained. Took a nap at dinner time, then by the time Wayne got home at midnight, I had an awful headache. Woke up Friday morning, head pounding, nausea. Just crawled back in bed !

Then Wayne says lets take a ride, where would you like to go ? Estes Park, I said.  Here in Colorado, when your going up over 7,000 feet. You always take warm clothes. We pack for over night . Wayne chose  The Evergreens on Fawn Valley River. The hot tub sits next to the river. The cabin had a full kitchen, 2 bedrooms, Beautiful living room with a gas fireplace, a balcony looking over the river and a SWEET spa in the master :) What a wonderful time we had !

   Saturday morning we drove over Trail Ridge road which runs through Rocky Mountain National Park. Ate lunch in  Grand Lake, as we meandered home. We took an unfamiliar pass called Jones Pass. A road that ends at the top of a a mountain with a  beautiful view of the snow covered peaks as far as your eyes can see . It was so breathe taking !

 Today is football for Wayne, so he's going to a friends to hang out. I will enjoy my memories of our trip. For now…God Bless !

4 days after # 4

7:39 PM

       Not sure if I mentioned this here yet, my gums hurt ! I found out this is a common side effect…OUCH ! I did get a lot of great advice from my friends at HCV Support & Nomads. In this I've learned, spicy food is no longer my friend. Nor hard or acidic things:( I must brush more often & easier).  I was told to try a rinse of equal parts peroxide & kaopectate. Sounds strange, but I understand it works. Another choice would be to pay $150 for a pint of Rx…NOT ! It's not as bad as it was a few days ago. Jalapenos set it off :(  

       This weekend has been pretty good. We did not go up into the Mountains. I wanted Wayne to have some much needed rest. Working his fingers to the bone for me. I love him:) So, we've just chilled. I have been spending numerous hours on the computer;  research , answering emails &  chatting. I have been on a roller coaster ride with the emotions. Nothing to worry about my friends & family. It's just the meds ! I keep telling myself that ! And it's true. It's not like I'm sad or depressed. I could just cry if I look at a picture or think a thought. UP down, UP down. It's actually kind of funny. So, I just  focus on something else in the apartment until it goes away.  I got this….so far!

 The last week or so I have had a craving for sweets. I used to love chocolate! Then, a few years ago, I totally lost my desire. Strange I thought. Well, to have the desire return so rapidly was stranger! I was reading a forum on nutrition when a light flickered. As it turns out, this virus feeds off sugars too ! So my thought is…the meds are working. The virus is losing, therefore, it's trying to convince me to feed it ! HMMM…. BAD VIRUS ! YOU LOSE ! I will now cut back on the sugar I do use, like in coffee. I'm going to kick this thing, I promise :D

Good Night, & God Bless !