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 !

Week # 4

      I changed my injection date again. I thought with Wayne working 4-10's , we could enjoy 3 day weekends. So, last night I injected myself for the first time. I DID IT ! I DID IT ! Now I know why Dora the Explorer gets so excited ! It  was really easy. Wayne never gets to do it again, sorry Babe:(
     I cleaned house yesterday. It was hard ! What should take an hour, took me 7 ! Shortness of breath, another side effect. Energy gets spent quickly. I have to learn to pace myself. I'm not the energizer bunny I once was. I did sleep well and side effects from the shot were not as bad this week. My cough is getting worse. I found today that I could cry at the drop of a hat. Not sad cry though. Cries of joy, happy thoughts and peace. The emotions are definitely starting to change. Still I am very happy. I laugh many times a day. Great man, great family & even friends keep me going. Those who know me , know I love to laugh. It's contagious & we feed off each other. I can't imagine going through this alone.
    As for appetite, it's fading fast (side effect).I am finding I have to force myself to eat. I have lost 10 lbs. since Sept. 1st. Great huh? I like,digging in the closet for my skinny clothes BUT, not eating right will aid the meds in lowering my immune system...not good. I'm finding 'wetter' foods to be easier to swallow. Yogurt, soup, creamy things.
   No hair loss recognized...yet! My face is looking thinner. Still smiling. I hate to close here on this note, but I'm getting so sleepy I can't see the keyboard ! LOL Night my friends > I'll return soon. May God Bless you all with peace, love & happiness

    
   

It's only Tuesday ???

 I feel like I'm getting a lot done and yet there is still so much to do ! Slept again, YEEHAA ! Made Wayne breakfast , thermos of coffee, and lunch for this evening.  Ran errands and shopped. Carried up two loads of groceries(3 flights…ugh )! I forced myself to eat soup & peanut butter sandwich ..:P.  Between the meds, lack of $$$ and Wayne working nights, I'm not eating as well as I should…BAD GIRL !

    I did buy vitamin B complex. I look forward to that helping, as so many have told me it will. I have always been a healthy eater. I do not eat red meat. Love every veggie God made. I don't fry.  I like super foods like  Quinoa & Wheat Germ. I HATE milk :P so I take a multi vitamin & a Calcium + D supplement. I do not drink soft drinks but on rare occasion. I love my water.  Drinking a gallon a day WAS no problem for me, Now I'm drinking MORE.

  I am trying to quit smoking…okay, I'm not ! After 30 yrs, a pack a day, I  have been down to 3 a day for months now. I know I am just using these as a crutch & I need to let it go. BAD GIRL again ! Pumpkin seeds are always around. That is what I found to replace the smoking AND they have lots of protein that I'm not getting from that red meat :).

     Just talked with my sweetheart. Told him my nights are long without him:(  Skyped with 3 of the grand kids & my daughter today.  Daughter turning 33 tomorrow, 3 kids, divorcing & will remarry Scott, great guy Just, he's OLD like me! luv u Scott:). Michael will be 29. Rich 27 .Both need to get married & give me little minnie me's lol ! Edward, 25, married to Lonna 24. They have 2 boys. A minnie Lonna & a minnie Eddie. I miss the family. 2,000 miles is a long way. And yet my wonderful man has made sure that I get to fly there or kids fly here so I don't get down. I have been blessed with such a caring man. We're not married

And yet I couldn't ask for more love & support than I get from him. Not to mention…he SPOILS me rotten !

   Oh, one more thing. Important…While at the Walmart, I'm in line behind 2 customers with WIC(it's gonna be awhile) I look over at the other lines. I see an older woman in the handicapped cart. She is struggling to put her groceries up. Others next to & behind her just watching. God told me" Go help her Crystal". So I did. She almost cried as she kept thanking me. Look, I'm not bragging on myself here. I'm making a point. God tells us things like this ALL the time. It's just a matter of do we or don't we ? Saying, 'oh someone else will' or 'I'm just too busy'. SHOUT OUT TO THE LORD here !! Thank you God for blessing me with that good deed !  Please do a kindness for others & be blessed. Okay, enough for  tonight. God Bless you all. Peace.

Ok, it's Monday :)

Wayne injected me Thursday. Not real bad. 4-5 hours after, I experienced that seasonal allergy feeling. Cough gets bad for 10-12 hours. Still I can't complain. Was very tired the next day. Starting to sleep better…nice. Wayne took me up to the mountains Saturday. We left at like 4:30-5a.m.First thing we did was stop on the Crystal River( :-D) and sit in a hot mineral spring. It's so cool, the spring comes out right next to the river. People move rocks around to build these little pools on the edge of the cold water. So the spring at like 123 degrees mixes with the cold river and creates an awesome place to relax. No charge, not commercialized, it rocks ! He took a pass in the mountains he hadn't been up before. It was AWESOME ! It was so rocky. Everything in the truck was bouncing around. Mostly me. Lol. We spent the night in Carbondale. So spoiled am I. Hot tub, pool, sauna! So relaxing ! Drove through Aspen, Marble, Breckenridge and many others towns. Had such a wonderful time, Wayne is working 4-10 hour nights, taking off Monday & we're going down to Telluride…WOOHOO !!! I love him so much!!!! How can I become depressed with a man like this…he won't allow it. Thank you God!

45 weeks to go :) or less if this Pegasys kicks viral load !

WEEK # 3

Wednesday, September 29, 2010

5:44 PM

                       This is week # 3. I have fared well thus far. I saw Dr. Monica(Physician)

 on Monday. She prescribed Trazadone 50mg for insomnia. 1-2 at bedtime. I have taken them for 2 nights now. First one, then the other:( This medication seems to agitate my RLS( Restless Leg Syndrome), can't win here. I did finally fall asleep at 3:30am this morning. Then, went back to bed at 6am after taking my meds & sending Wayne off to work. So, I have had a much better day today.

                      I had a blood draw at 11:00 am & met with Dr. Jen. By this time the group was to be randomly assigned either to have the dosage adjusted regularly, according to how much of the drug is in the system at the time of blood draws OR the dosage to remain stable throughout treatment.   I have been assigned to the group who's dosage does not change. Because my viral count was so high, I had hoped to be in the other group. God knows best.

                     I asked Dr. Jen if I could switch my injection day to Thursday. She said that was fine. I figure if I'm going to feel "spent" the following day & I'm NOT working right now, let it be on Friday rather than Saturday. This way it doesn't mess with the weekend, my only time to have fun with my sweetheart:) So, tomorrow night is the new injection night. Wayne has one more opportunity to stick me 'nice'. If he shoots it like a dart again, he's done ! I will inject myself next week! 

                  Went to my job today. The one that rehired me one month ago, knowing about the study & treatment.  Then, after  visually seeing how often my appointments at the hospital were, decided to have me resign. Well, I explained I feel great & my visits at UCH(University of Colorado Hospital) were going to be less frequent.  I could do my visits on my lunch hour, taking little or no time off work. I was asked "well when is your treatment done?"" Forty-eight weeks ",I replied. " well we'll keep you in mind at that time." how wonderful ! So, I am going to do my best to find part time work for now. I've been told, the busier  I stay, the better I will do through treatment. Besides, hate having to ask Wayne for everything:(

                 I'll be back here on Friday to let you know how injection 3 goes. Peace & God Bless.

2 Days after # 2

Sunday

9/26/10

Five hours into my second shot I felt as though I had walked into a field of ragweed ! Itchy eyes, stuffy nose, coughing and sneezing. This went on all night into Saturday. So I didn't sleep much Friday night. I was just blah all day Saturday. This morning ,I didn't fall asleep until after the sun came up. Only to have Wayne wake me a couple hours later saying "we're leaving for the game in 45 minutes." lol Baseball that is. I perked up pretty quickly. Wayne printed 8x10's of the pictures taken on photo day back in July. Several players & myself. When we got to the game I got Jeff Francis (pitcher) to sign the pic of he & I. So, even though they lost to San Fran, I got an autograph…nice:) I'm still feeling grateful that my symptoms are mild, for now. I have a doctors appt. tomorrow. Maybe I'll  get  something to help me sleep. Blood draw again on Wednesday. I'm considering switching the injections to a week night so our weekends won't always be screwed. May you all have a blessed week.

Week # 2

5:16 PM

My first week has been interesting. I have had some ups and some downs. Headache, joint aches, nausea and diarrhea. My head has been in a fog most of the time. I went Thursday morning for a blood draw. Later Dr. Jen called to tell me that my numbers looked good. My red & white blood cells are still holding their own. My liver test showed that my ALT and AST were NOT elevated. The copegus (tablets),I have taken on time, as scheduled every day. I'm still having trouble sleeping and my mood swings aren't real pleasant :(  Still, I have high hopes and faith that I can do this.

  I have lost my appetite somewhat & I have dropped 6 pounds in the last  week.  I got my haircut on Wednesday…SHORT!  I know, I know, it'll grow back. Right after I lose most of it! Lol.  I am just a couple of hours away from injection #2 of pegasys. Tonight and tomorrow will be interesting also. I'm not worried about a bad reaction as much as I do not anticipate the shot. The one I was given last week at the hospital, didn't hurt. This one might. See, I pissed Wayne off (big time)2 days ago. He is still not happy with me.  Now, I could give myself the shot, but, I think I owe it to him to get even. Lol. I truly love this man, and it breaks my heart to know I put him thru agony. I hope his love is strong enough to endure the entire treatment. See, I was a bitch BEFORE treatment started. God help me & PLEASE,GOD, Bless Wayne ! I'll be back in the next day or two to let you know how I feel.

First Day of Treatment

Friday, September 17, 2010

Wayne dropped me off before 7:00 a.m.  To the 12th floor(Executive suites) :)  Vitals taken, IV in, 3 pills & a shot. All by 7:30. For the next  12 hours they would draw blood 9 times, feed me lunch and dinner and monitor my vitals.

I felt a little nausea, head ache, flu like symptoms.  In all, I didn't think it was that bad. I had prepared myself for this horrible experience. It wasn't like that at all. Wayne had me home with a  chocolate milkshake  by 8:30p.m. I took my next dose of meds & slept well.

Today is Sunday Sept. 19, 2010

My third day on the Copegus and I must say, I don't feel too bad. I have flu-like symptoms off and on throughout the day, but really, I've been through worse.  Mentally I feel  great. I guess because I had set myself up for  bad reaction, that hasn't happened. At this time a great weight has been lifted from my mind.  Need my sleep. Good night and God bless.

My first appointment

Tuesday, September 07, 2010

10:00 AM

My first appointment was three hours long. Wayne met me there for support and to learn how to give me injections. I'm not ready to stick myself.  A lot of paperwork, blood work  and brain overload. This is what I was told to expect:

48 weeks of treatment

1000 mg Copegus  a day.  5-200 mg tablets(2 in the a.m., 3 in the p.m.)

180 ug/0-5 ml. 1 injection once a week(by my love)

2- 12 hour days spent at the hospital for research purposes(paid) :)

9-1 hour visits spread out over the next 48 weeks for blood draws & research

Side effects, lots of scary side effects!

These side effects almost scared me off. Though my faith in the Lord and my desire to grow old have me right here in the flight. I start treatment on Sept.17th with a 12 hour stay. This is done for two reasons; research, and to be sure I do not have a bad (first) reaction to the meds.