my time fighting the dragon Journals
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lingering brain fog? Or, is this the new normal?  Hope not.....

Sep 01, 2012 - 6 comments

Today is September 1, 2012
I was just re-reading my journal entries here for the past 15 months of my life  treating HCV . Thankfully I have gotten a few laughs out of it and am so glad I wrote about what happened.  Reading it now with almost all the drugs out of my system, with eyes that see life much clearer now,   makes all of what happened seem like I was reading about someone else's life.    Until yesterday.  I guess I still have some lingering  brain fog sx, problems with nouns, and somewhat of a sarcastic attitude but everyone I live with seems used to it.  (or have they just tuned me out)    Im sure all of this will pass.   My brain fogs always seem to center around things of value.  Lost money, mine and others, misplaced jewlry, car keys, leaving my car door open in a parking lot with my mac lap top just sitting there in the passenger seat waving at passers by.....   on and on.     Well the other day I had to take my dog to the vet and took my man wallet (one that my 94 year old client gave me after I dropped two twenty dollar bills by his kitchen table and was to embarrassed to ask about it (after I banged my head against the wall  trying to figure out what happened to it.   The next day when I saw him it was funny because I was just looking around funny like and he says, "loose somthin?"  I just smiled and he handed me the wallet with the money in it and said " I think you could use this to keep your money together"     You just have to have a sense of humor or you'll go nuts on this [email protected]  )    Anyway, so I take my dog in with the man wallet in my back pocket, get the dog (christmas) all her shots etc., go to check out and go for the wallet, not there...  Im like, $hit!   Not again!!!!  I think i'll run out to the car before she gets there to check me out, but unfortunately dont get out of the door fast enough and have to say "Be right back!" as Im poopin in my pants about the missing wallet.  Put the dog in the car, look around no wallet.  Rush back inside and now Im thinking,  ok I have to say," can I go back to the room and look to see if I left my wallet back there", and as Im rushing in the door my toe catches the door jam, I go burst-flying,   into the waiting room full of people and their pets, I mean forward propelled, land on knees hands stretched out and slid across the room...  All my newly grown hair in slow mo is now landing in front.  (kinda like IT)  You coulda heard a pin drop in that room......HELL-O! I sure hope you have a surveillance camera in here!  EVERYONE BURSTS OUT LAugHiNG!!  The girls run around the counter and help me off the floor as I continue to lurch forward through the doorway down the hall, saying I think I left my wallet back here"  Then one of the girls says, " Isnt that it in your back pocket?  
   Well, one more month to go for my 6 month post VL test.   Lets hope all this subsides and I get back to my normal goofy self.   My knees are stinging a bit today.   See you in about 6 weeks with my news of SVR!!!!!!!!    LMFAO!!

48 week incivek Treatment Almost over

Apr 08, 2012 - 1 comments

I started my Treatment Friday May 13th 2011 I took my last interferon  shot Good Friday April 6 2012 and will take my last Riba pill Friday April 13, 2012.   Hmmm....  

Since I found out that I had HCV it became an obsession with me, studying it, thinking about it, worrying about it, etc.  I needed to try and take the opportunity to get rid of it.  

My 4week vl was questionable und or not so I ended up doing 48 weeks.   I became und somewhere between week 4 and 12.  What  a bunch of huey!  Those stupid VL tests have caused more anguish for many than the sx themselves!
  I wish that I could say that treatment was easier than it was for me.  I think I had most of the negative treatment sx for most of my treatment.   One thing that was never in danger for me was my WBC or ANC, so in that regard I have been lucky.  I suffered from severe anemia and have been on procrit since week 5.

In the same circumstances knowing what I know now, If I had the chance to do it again I would because I was stage 2, (I feel like that was questionable could have been a stage 3) over 50, no other major health problems, had a chance to be in an excellent dosing study with the incivek. ($$saved) .  I still spent a lot on all kinds helper drugs even with insurance.  I am a CT allele which really needs the DAA for extra lift in SVR chances,  Only working part time for myself as a caregiver to seniors. (go figure).  

Now, On the other hand, Right now,  I feel like this treatment has about ruined me physically and mentally.  At the end of treatment, I feel like an elderly woman, look like one, act like one.  Not that there is anything wrong with that but for a 53 year old  I feel like Ive lost 20 years.  Ive lost 20 lbs. lost half my hair,I can't hardly carry on a conversation(repeat my self over and over), cant think clearly, drive a car barely,  I have spurts of motivation but not long lasting.  I am very obsessive.  ocd about food, dirt,  I have grossed myself out so many times on treatment that I cant imagine. Even though I have a husband and two teenagers I did not have a great support system.  I feel like not being properly cared for when I needed it the most really exasperated the treatment difficulties. Hopefully I will be able to get past that resentment.

  I have had bi-polar episodes that make me go from very angry(rant), too happy, so sad (crying all the time). full of guilt, embarrassment, hatred, needy, I wonder if I will ever be normal again,  OMG!  What the hell is in this stuff that screws with the human body so severely!!!!

I feel rode hard and hung up wet!

I cant advise anyone to do this or not to do this but I would really think it thru and look at all the options so carefully.  Once you get started, just stopping is just not a good option unless a life threatening situation arises.   This is a HUGE commitment.  You have to be completely dedicated to this.  This can be very tough for many.  This is not for the faint of heart.  You better get ready for a fight! A real battle!  These meds are mega powerful! Have an array  of sx from  mild to severe.  Like I said, Some of them can be life threatening.   I just hope the researchers come out with something much better for treatment soon. .  I really had no idea what I was getting into.
I havnt had my 48 week VL test done.  Not sure when they do that.  Now as of this coming Friday I will play the SVR waiting game.  That is also a bunch of Huey.   I will be sooooo relieved when this is over.  

The only other thing I can say is, I wish everyone who decides to do the current treatment options all the best and mostly SVR!  

Week 42  The Sun is shinning so far this week!

Feb 27, 2012 - 2 comments

I have got off all the antidepressants since they didnt seem to be working well.  I feel much more normal off of them.  We will see how it goes in a couple of weeks.  I only have 6 more shots to go and I got my labs back to day.  UND!  I have dropped my procrit down to 1x every two weeks and hgb is running about 11.1.  I may only take a couple more shots of that.  I have so much going on in March that it will fly by!  I am very excited to be nearing the end.  I am feeling good physically and mentally today.  This past weekend I raked leaves all day and felt great!  Still not the nicest person walking the planet but things are looking brighter!  I even picked my camera back up and started taking photos again this weekend.  Havnt done that in a while .

Middle of Week 37

Jan 24, 2012 - 1 comments

Hi Everyone, I havnt posted in awhile, just reading posts lately.  

Well, here is my  update. tx naive geno1A  week 37  treatment . incivek dosing trial.   Study results showed by   tagman test showed det. at 4 and 8. I would imagine that would be somewhere under 25.    (The study wont let me know the amounts if any registered)
I had my private tests done and  week 4 was <43 pcr, week 8 heptamax <5.    but oh well, better safe than sorry and do the full 48.  Glad to do it.
  by study results,   und at week 12 to present time.  

If anyone is interested  You can read the early months of treatment to see the sx  I was dealing with at that time in my journal entries.  No need to even try to repeat all that!!

  Most physical symptoms has mellowed to the well known slow grind. Fridays are my best days.  I take my shot on Friday night, if Im lucky I can do some things on Saturday but  I do still spend most of the weekend sleeping.  Monday, Tues Flu like aches and pains, like your just getting the flu but it never comes on.  headache etc. Wed, thurs getting better and Friday can hardly tell Im on treatment.  
I explain it to the layman by saying dead in the water, emerging into the baton twirling, crazy, mad ,white,woman!

  Im getting used to going around on hgb around 10.  I am still on procrit 40,000 units once a week.  My other blood work looks good .  I still have brain fog but if I work at being organized I can usually get along pretty good with that.  

The most pronounced  side effects for me at this point in treatment  are the emotional ones.    even though I cry pretty easy  the anger issue is severe.  I have had to get on a anti-psycotic called zyprexar. I have always been hotwired,  no need to go into any detail but things at home are usually very rocky as soon as I enter the picture.   I can handle my self in public fairly well.   (but the idiots I live with)   ....

I have been on Lunesta, zanax, tramadol, citaprolam,zoloft,  and now this!..  But you know, I am feeling better.  There has been several times I would have blown my lid and have been able to stay intouch.  So we will see what happens. So, those of you with severe Riba rage , and nothing else is working,  you might want to look into it and put it in your knowledge file.  I will keep you posted on the anger results..   Of course what works for one my not work for another.   But some of us need an arsenal to fight this at our disposal.  What ever it takes to get through this works for me.     Hope you all are fairing well,  hang in there.    I only have 10.5 weeks to go.  I thought this time would never get here.   Getting down to the single digits!!   Come on Springtime!!  April 6 is my last shot and last pills on April 13.  This is also posted on the forum.