Sunday, May 30, 2010

First Month Is History

     Things are going pretty much as expected here.  Its been 4 full weeks since I began treatment, and I'm really beginning to feel it now.  I am very tired, not interested in much, losing my appetite, and pretty lackadaisical.  It's a gorgeous Memorial Day week-end, and I've spent most of it bed! 
     Had an MRI of my liver on Wednesday to keep tabs on any possible malignant developments.  I've had MRI's before, but this one seemed particularly cramped and loud.  I asked the nurses what accommodations they make for patients who are on the heftier side.....I mean I'm not tiny, but pretty average size when it gets down to it.   She said they have machines that are bigger, but if there are really really bigger patients they send them to the Penn veterinarian campus.  I thought that was really interesting!
     This week's blood work was a biggie!!   First test for viral load since I began treatment.  Won't hear back for a week or so, but anxious to see that number.  Also, I expect the hemoglobin levels to be really down, which would explain my tiredness.  They have to crash before I can start the Procrit to build them back up again.  I am hoping that once that happens, I'll be able to stabilize a bit for the long term.
    Fruit is the only food that I want to eat.   I forced down a half of a corned beef sandwich this afternoon, and then enjoyed some watermelon!!  It's so ironic for me, who has absolutely loved food her whole life!!  I can't tolerate coke or Pepsi now...sends me in to a total indigestion fit.   But ginger ale seems to help, and those tiny spice gumdrops help keep the bad taste out of my mouth. 
     Glad I still have tomorrow off before I go back to work.  I still have about 20 days of school left, so summer seems a long way off yet.  Happy Memorial Day and take time to stop and thank those who have served our country, and the families of those who have made the ultimate sacrifice.  God Bless America

Sunday, May 23, 2010

Weekly Update

    Thank you to everyone who is following my blog!  It's cool to come on and see the numbers grow!  It also creates a bit of a responsibility for me to get back here and update things!
     Had my first treatment dr. appointment in Philly on Thursday.  The office is right on Broad Street, 2 blocks north of City Hall, and I kind of smiled to myself as I pulled into the parking garage.  Toto, I don't think we're in Muncie/Cowan any more!!  Anyway, it's an easy run, and I am so glad I have changed drs.   The Physician Assistant follows me, under the guidance of the main dr, who happens to be chief of hepatology and gastroenterology at the university.  He was around on Thursday, gave me a big smile, and actually knows who I am and stopped to talk for a minute!
     No big medical changes at the appointment.  My blood counts are starting to go down, so that explains my increasing fatigue, but things are off to a good start.  We drew another blood sample for genotype testing and it was sent to a different lab.  I am promised a call as soon as it comes in!  We discussed the genotype conflict, and I got an honest to God answer that there is no doubt a lab error involved, it just depends on which end!  So all I can do is wait for the new one to come in, and then have some more frank discussions.  Best news would be that I am a gen 3, didn't waste the last treatment time, and still made the right decsion to get on with treatment this time.
     Friday night I really got zinged with fatigue and had that first deep down to the bone need to crash.  Struggled through dinner with my mother-in-law and was in bed within 10 minutes of getting home.  I was SO tired, but not necessarily sleepy, so I read for awhile in bed.  Saturday I felt better, and we finally got down to the marina to open up our sail boat for the season.  I paced myself there, and only did a few necessities, and took a nap on a beach towel on a bare settee for an hour.  We grabbed a bite to eat and came back home.  I'm glad that the process is begun.   I hope to spend lots of time there this summer just resting and hanging out.
     The big outing for today was the grocery store!   It's so foreign to me to become more dependent on Steve.  I had to tell him to slow down and not walk so fast through the store. Food shopping is not nearly as interesting when you really don't care what you eat!  I just smile at all the years and years I've done this by myself, in the midst of raising kids, working, running other errands, etc.  Anyway, we have some basics in the house again.  Cereal with a banana and a strawberry was fine for me for dinner. 
      My hair has changed over the last week, also.  For the record, I have always had very fine, naturally wavy/curly hair with a lot of body to it.  Last time I was in treatment I had it cut very short to deal with the loss of hair and I've just kept it that way.   Well, now it has become very coarse and straight, almost over night.  Not real attractive this minute, and I don't have a hair appointment for another 10 days!  Did I tell you the dr said I can continue to have it colored and do whatever I want with it?   There was a report on TV that suggested hair dye was hard on the liver, but he said it wasn't proven and not to worry about it.  I wasn't sure if I could handle giving up my dirty blonde hair for natural grey right now!
     I do have to honestly say that the first wave of depression has hit.  That's one of the major side effects of the medications.  I'm on an anti-depressant, and will keep a close eye on it to see if we have to tweak it.  I was talking to my daughter just to get caught up on things, and all of a sudden I was crying.  Poor thing, didn't know what had hit her!!  Can't give a rhyme or reason for it, and will try really hard to boost myself up with prayer and positive thoughts.  "Skyping" with our grandson has been great therapy, and I know his mom/my other daughter, goes out of her way to arrange for our little visits to cheer me up!  There's nothing like seeing him run across the room to demonstrate his new sneakers to bring a smile to my face!!  It's such a blessing to be living in this age of technology!!!

Sunday, May 16, 2010

How Am I Feeling?

    I haven't said too much about how I am actually feeling, so here is a quick update.  So far, so good.  I did my 3rd shot Friday night, and take 1200 mg of ribivirin a day, and right now it's not too bad.  I get tired, especially on the week-ends after the shot, and try to program in a good 3 hour nap on Saturday and Sunday.  And this week I started taking time off work in the middle of the week to rest.  But I haven't changed much about my general lifestyle yet.
   I'm on a permanent stomach med (prevacid??) to deal with the severe indigestion, and sometimes I'm hungry and sometimes I'm not.  Not a big deal right now. 
   I did have a bit of a scare Thursday.  Apparently I broke a blood vessel in my eye, and it was red, but by Thursday evening looked like something from a Freddie Kougar movie!!  I took Friday off to check it out, and it turned out to be no big deal.  Eye involvement is one of the drug reactions they tell you to look out for, so I wanted to be sure this was nothing important.
    Anyway, I'm hanging in there, and have my first dr appt on treatment Thursday.  My blood work is strong, and I'm feeling okay!!

Saturday, May 15, 2010

Bring On The Drama

     HCV is subgrouped into 4/5 genotypes, each with their own quirks and profiles, if you will.   I became familiar with this in the first go round with treatment.  Gen 3 is less prominent in western countries, but has a higher percentage of SVR (sustained viral responsed) in treatment and in the world of HCV, a pretty good call.  SVR for gen 3's is about 80% on the first try, and most importantly, generally only treated for 24 weeks.  Needless to say, I was disappointed and bummed out when my viral count came back up 6 weeks after finishing the first treatment.
   Here comes the drama part: Routine baseline blood work came back this week, and just by chance, the new doctor ordered another genotype test.  This time I'm a gen 1a  This isn't supposed to happen, my friends.  It's like getting a change in your blood type 2 years later. 
    I put out a post on my HCV forums to see if anyone has heard of this.  A couple of people replied that it theoretically could happen if the original blood transfusion had both types in it, and maybe they heard of someone else 3rd hand that this had happened to.  My current dr put it out to the university hospital hepatology group, and not one of them had heard of such a thing.  So here are the implications.....
    If I'm gen 1a, there's no way that the initial 24 weeks of treatment would have been successful.  I basically wasted that whole time.  I began treatment this time assuming I'm a gen 3, and the new drugs on the horizon are basically aimed at 1a, so there was no point in waiting for them.  If I'm a 1a, I might have made the decision to wait another year or so for the new drugs.  But now, I've already started the meds.  48 weeks is the recommended treatment for gen 3 on retreatment, but gen 1a's are sometimes stretched  out to even 72 weeks on retreatment.  Ugh!! 
   Another test is necessary for my own peace of mind, even though the meds at this point are the same.  I've decided to have it done at the university hospital where my dr is instead of my usual lab.  Sounds suspiciously like a lab error to me, how about you?  And that is just plain scary.  It could be a lot worse.....lots of other incorrect lab tests could be disastrous to patients.  But it sure does take away a lot of the trust and confidence in what is supposed to be cut and dried scientific lab data.  I'm the one who picked it up out of the report, btw.  Tiny little print on a computer screen just went right past the drs initial review.  Once again I proclaim to the world "YOU HAVE TO BE YOUR OWN ADVOCATE AND ON TOP OF YOUR OWN CASE!"    

Sunday, May 9, 2010

Waiting for the pounce

It's been a good week, all things considered.  Worked all 5 days, even had after school stuff a couple of nights, and getting a good night's sleep.  We even took a spontaneous week-end trip to Virginia to catch up with old friends!  I figured we'd better do it now, while I'm feeling this strong, just in case.....  I still got my Saturday long nap in, and managed to last longer into the evening than I expected!!
   One of the major side effects is the anemia induced by it.   Since I have increased the ribivirin by 50%, it would be naive of me to think I can escape that.  My hemoglobin plunged last time and I was worn out.  It is reported that many are effected by the 3rd week, so I'm sort of waiting for the pounce.  Although I'm tired now, I can still function, especially after a good nap. When the blood counts drop, it's a whole new kind of tired.  Pro-crit, which boosts hemoglobin, will most likely be ordered, and then I can begin to figure out more of a long-term balancing act. 
   There's some heartburn beginning, but again, not horrible.  We stopped at a McDonald's today for ice cream or shakes, only to be told 5 minutes later that the machine was out of order! And do you realize there's NEVER a good old basic custard stand when you really want one?  We took the back-road, Rt. 40, home from Baltimore, and it's just good old Americana.  But it seems that tattoo parlors have replaced Dairy Queens at an alarming pace, and we finally got ice cream at home here in South Jersey!!
    It's Mothers Day, and I realize how much I miss my own mother after 8 years.  Wish I could talk to her now about her own illness and how she managed to keep her spirits up for others with such grace.  My 3 kids all called, and a gift of new pajamas was right on target!! 
    Would love to get some comments back on my postings.  How am I doing??  Too wordy??  More technical stuff? 

Wednesday, May 5, 2010

So Far, So Good

I'm at Day #5 of my journey, and so far, so good.  I'm trying to take one day at a time, and I'd love to really believe this is how it will be the whole way down the road!  I was able to go out Saturday evening to a family birthday dinner after purposely taking it easy on the first day.  But Sunday I woke up feeling great; went to the gym, bought some flowers for my deck, and picked up a few things at the grocery store!! 
  Today, Wednesday, is the first time I really felt it at work.  The afternoon was tough because I was really tired, but  I managed to stay for a faculty meeting, and then took a nap when I got home.  A bit of nausea, and not much appetite.
  Have I mentioned what a ground hog I am??  For at least the last 3 months I was on a total eating binge!  I chalked it up to nerves and anxiety, and the knowledge that soon nothing was really going to taste good.  So I had been eating absolutely anything I wanted, and began to feel like a groundhog plumping up for the winter.  Consequently, there are extra pounds here that will keep me going for awhile, even with a loss of appetite.  I read on a chat line about some other people having the same reaction; I doubt that it is unique.
   Blood work tomorrow.  I had a baseline drawn last week, so this will be the first comparison sample.  An online friend of mine undergoing a second time treatment reported that it didn't hit her hard until the third week of treatment.  Say a prayer for me, maybe I won't get hit as badly!  

Saturday, May 1, 2010

1 Down 47 To Go

May 1, 2010   Last night I began my treatment protocol.  Took a Ribasphere after dinner, and waited for the shot until I was ready to go to sleep.  It's amazing how easily it all came back; shaking the vial, attaching the needle, picking out a site, etc.  Steve was a tower of strength, and got it all ready for me, but I still like to do the injection myself.
   I had a good night's sleep, and woke up feeling groggy.  But, ask my family, I am not a morning person on the best of days!  I have taken it easy all day, took a 3 hour nap at noon, and actually went on an outing alone in my car to pick up dry cleaning!  After several cups of coffee, I switched to water.  At least 80 oz is recommended for me a day!  It will take me a while to work up to that, but I am definitely thirsty and dry. 
   I'm now trying to make a decision about attending a birthday party this evening.  I really want to go and proved to myself that I won't let this get me down, but there's a part of me that wants to stay home.  I have another hour to make a decision!
   Thank you to everyone who has offered good wished on my blog!  I am flattered that so many checked it out as soon as I shared the address!  I'm working on a counter for viewers, but haven't figured out the tech part of that yet!