January
1 ~ I had no Peg to take today because it is a holiday and my
appointment should have been today, so I just did my Riba. I went in to
USC on the 2nd and got my monthly supply of meds and did my shot that night.
The honeymoon with side effects is definately over. I feel like crap! I
have noticed that I don't have too many headaches, but my sinuses are driving
me nuts. We have been having very warm dry weather too so that doesn't
help. I've been noticing some pains in my liver area too. That isn't a
very good sign usually. The diarrhea is becoming daily and the short temper
is getting worse. Susan says it's time to see the Psych doctor again, so
I made that appointment. What really cracks me up about this study, is
that they HAVE to run pregnancy tests every month. Now I understand that
is because of the problems with the Riba, but I've had a hysterectomy for
the past 10 years and they still run it on me! I haven't heard yet what
my baseline PCR was, but Susan said she will get it to me when she gets
it back. They also ran a Genotype test in the 2nd week, but that should
come back as a 1a. It would be interesting to see if it was something else!
I don't think that could happen though. My brain is fuzzier and I'm having
troubles remembering things again. Thank goodness my family is used to
that. Larry also seems to be more understanding this time with my treatment
and my sides. I'm starting to itch again, and that just drives me nuts.
I only itch in certain places, like behind my right knee, below my
knees on both legs, and between my shoulders. I've still got some Benedryl
lotion from last time and am using it again. My skin is really dry again
too. Oh and my eyes are driving me nuts. They are just so blurry all the
time. I'm going to go in to have them checked but I really think it is
because of the drugs. I'm getting sick of drinking water too. I never did
like water, and I've been pouring it down my throat for the past 3 years
already. The dog next door is driving me nuts too. He just barks at nothing,
especially when I am trying to take a nap. I'm also getting tired of people
telling me I look good. I don't look good. I look like crap. I can see
that with my own two eyes. I know they are trying to be nice, but the last
thing I want to hear when I am about to keel over from exhaustion is that
I look good. (the mood swings are getting worse!!) I made my appt with
the Psych and will see him on the 26th. Maybe he will up my Zoloft dosage!
I made it past Midnight on New Years! BIG MISTAKE. I was worthless all
day on the 1st. I felt like I had a huge hangover. I always tend to over-do
things then pay for them for 2 days afterwards. We had a great time though
and even danced!! So it was worth it!
January
8 ~ Well I'm going on my third month on treatment now and I
just don't know. I told Larry that I hope now that I get put into the part
of the study that only gets observed for another 3.5 years. I just don't
think I could handle ANOTHER 3.5 years on this stuff. I've already done
3 years on treatment, with only a couple of months off, and I can't see
trying to live like this for another 3-4 years more. My ALT's aren't dropping
very fast and I know that means I'm probably not responding. I knew starting
this study that I may not respond. After all, Peg is STILL interferon and
I did the combo once to no avail. I have to keep telling myself that I
started this study for the long term portion, but now I'm not so sure I
want to do that either.
I met a young girl on New Year's Eve. She came to dinner with her parents
and was the cutest girl, very sweet, and had a beautiful smile. She wore
the niftiest hat I'd seen in a long time. You could see the energy leave
her by 9:00. When her mother left to take her home, I asked a friend what
was wrong with her. I knew the hat was covering a hairless head. This young
girl, only 14 years old, had been diagnosed with leukemia at 13. She had
just finished a very difficult round of chemotherapy. She was on a 2 month
break, then would begin another difficult round. I sat there thinking about
the fairenss of this and the quality of life. My doctor had told me in
1998 that he figured I had 5 good years left before I would have to consider
a transplant. This young girl will be lucky to have 5 years left on chemo,
if she lives that long. How fair is that?
Here I am, 44 years old, having had a pretty good life, raised my daughter,
and been blessed with a beautiful granddaughter. I may not make it to 55
years old, but this young girl may not make it to 20. And I am feeling
sorry for MYSELF?? I've had a life. She doesn't have very good odds of
having one past her teen years. Yet she was smiling, rides horses, and
has a fantastic attitude. Why are kids so much better at accepting this
kind of thing than adults are? I've been seriously considering dropping
out of the study at the end of this 6 months. If I'm only going to have
a few good years left, why spend them miserably? I do know that right now,
I would NOT opt to have the transplant for many personal reasons. I'm sure
I'll change my mind several times before I have to actually make that decision.
I'm thinking that I should be enjoying my life, enjoying each day and doing
things I like to do, not forcing myself to get out of bed in the morning.
The insomnia is kicking in so I am up most of the night now. The diarrhea
is getting worse. My skin is dry and cracking. I itch all the time, all
over. I have no taste in my mouth anymore. My hair is starting to fall
out again. I'm not so sure this was how I was supposed to be living my
life. If I have to have a disease like HepC, and if it is going to cut
my life short, why should I spend what time I have left taking drugs that
make me sicker than the disease itself?
January
15 ~ Boy I was really a whiner last week. I still don't feel
so hot, but I don't feel so lousy either! Thank goodness those "poor-me's"
don' t hang around for long. I even considered quitting the study, but
Larry talked me out of it. I'm glad he did too.
My hair is still coming out, but the diarrhea has subsided. My skin is
still dry as the Saharra and itching like crazy but I'm using a Benedryl
lotion and that is helping. My headaches have gotten more frequent and
I'm taking my Darvocet for them, but the Study nurse doesn't like me to
use that. I figure if it gets rid of these headaches, I'm going to use
it.
Larry and I have decided to move to Bakersfield, CA. We found a beautiful
home, not even built yet, and are in the planning stages now. I am very
excited. The house should be ready for us to move in sometime around June
this year. Erika won't be moving with us, so she will finally be on her
own with Arianna too. I'll miss them like crazy but they will only be about
1.5 hours away. I'm already planning to kidnap the baby on the weekends!
January
22 ~ We celebrated Erika's 23rd birthday on Monday. I can't
believe my baby is so grown up and a mommy on her own now. Time sure flies.
I've made arrangements for a terrific lady to take over the support group
I run when I leave. In fact, she will be taking over in April so I have
time to get everything together for the move. I'm really going to miss
the group. It has kept me going these past 3 years and kept my mind off
of my own problems. I know they will be in good hands though. Kathie has
been running a group for something like 4-5 years now.
I'm getting really irritable again. I do seem to be able to see that it
is coming on or happening though. I try to leave the room so I don't jump
all over Larry and Erika for no reason, but I don't always make it. I hate
hollering at them simply because they are breathing, but sometimes I just
can't stop it. I guess I am at the stage where I do alot of apologizing
again!
I've also been having a lot of pain in my liver area. I know my ALT's aren't
coming down like they should be. I'm in week 12 now and still they are
not in the normal range. BUT...that is ok because my goal was to get to
the long term part of this study anyway. The only thing that is bugging
me now is that I have not lost one single pound since starting this stuff
again. I REALLY need to lose at least 10 pounds before we go to DC in March!
January
29 ~ Well, I had my 13 week appointment this week. I even saw
Dr. Lindsay this time. She felt around my liver, said I was doing great
and was gone! She is one busy woman. Susan, the study nurse, asked me to
try Aleve for my headaches. They really don't want me taking a narcotic.
I picked some up on the way home, and even took one when I felt a headache
coming on. It worked so I'm going to continue to use it. I know the Darvocet
isn't good for my liver so if this stuff is going to get rid of the headaches,
I'll use it instead.
I'm getting real overwhelmed about this moving business. I don't know where
to start with this house. I am not getting alot of help from the other
2 people who live here, meaning Erika and Larry. She is in a state of denial
and he is just busy telling me what "WE" need to do! I'm starting to pack
things and putting them into storage.
I've been eating crap for the past couple of weeks. I seem to just eat
because food is there. I know it is probably boredom, and if I could get
motivated to begin working on this house, I wouldn' t be stuffing my face
with junk! I still itch like crazy but am getting used to it now. Only
3 months to go on this portion of the study!!!