It's a beautiful day.....

Finally, some respite from the gloomy weather and a nice sunny day ahead! I've been having trouble sleeping for the last few months - I wake up between 0300-0400 and have a headache, abdominal pain, drenched in sweat and have severe anxiety. The anxiety is the most difficult; I'm not thinking anxious thoughts, it is 100% physical. I feel like I'm going to jump out of my skin. My doctor thinks it is most likely related to menopause but it's so hard to tell - many symptoms of Hep C are the same. I can't seem to find anything that's working and I can't use an estrogen patch because it is very harmful to the liver. Many medications are bad for the liver - Tylenol is especially bad and I can only take it in limited quantities (actually, I never take it myself). So...like many things in my life, I just muddle through and do the best I can.

A very wise person once told me that my value as a person goes far beyond my medical diagnosis. I believe her. Another (not so wise) person told me that everyone is dying. Please don't say that to people with serious illness - while it's true to some extent, it negates their personal struggles and the fact that we stare death in the eye every single day. If I were to get H1N1, a serious injury, etc. - I WOULD NOT SURVIVE. That's not the same as the possibility of getting into a car accident or having a tree fall on me.

Well, I better get out and live this beautiful day, struggles and all. And.....I hope for one peaceful night of rest. Just 8 hours will do.

A very special day....

Today is my youngest son's birthday. He is 23 years old. He is simply one of the finest young men I know; he is known for his big heart and service to the community. Throughout my illness he has always been here for me. He is in grad school to get his Master of Science in Accounting and is about to set off on a 3-week backpacking trip on the Long Trail, which runs the length of Vermont from the Canadian border to Massachusetts (270 miles). It's our nation's very first hiking trail. He's a kind, smart, funny and very loyal mountain man. I will leave you with his favorite quote:

"Keep close to Nature's heart...and break clear away, once in awhile, and climb a mountain or spend a week in the woods. Wash your spirit clean." ~ John Muir

Another day

Another day of feeling marginally well. I did manage to get up, accomplish a couple of things then return to bed for awhile.

I don't think I'll ever fully adjust to being sick. So many things about my illness parallel my current personal life. Even though my children are grown, I am still a mom. It's difficult to find that balance of if/when to step in on an adult child. When you add illness to the mix it changes the whole dynamic. Do I even have the energy to confront this issue? Which battles do I choose (if any)? How do you deal with adult children who you know are making bad choices for themselves?
I put it out to prayer and wait for an answer. That works quite well for me - I am in the "waiting for an answer" mode at the moment. Praying for clarity.

This is a poem I wrote in 2008. It is titled "Learning, Part 10"

The endless liquid ocean meets

The eternal sky

And the point of their intersection

Indeterminate.

Eternal sky

Awash in crimson - purple,

Its heat reaching me while its

Loving fingers hold my face.

Wind blowing my direction

Whispering, you are loved as you are.

God of the Universe

Lives within this vessel

Chipped and worn from life’s many challenges;

Remaining intact and filled to the top.

Those who believe God is “out there”

Are starving, impoverished souls.

The divinity resides within and is manifested

In the beauty of our creation; the wonders of our Universe.

Those who seek will find

The love of That which dwells within us,

Those who surround protect and love us

And a Universe that is connected -

An all-conspiring symphony of love.

How could we not know?

I promise to keep my eyes open in wide wonder,

And to seek.

June 11, 2010

Well, it's 11:00 EST and I've already managed to get my mother and my daughter mad at me. The latter is a common occurrence (she's 19) so it's pretty much daily. But not so with my mother; I hate to make her upset and avoid it at all costs. She is beginning to become quite forgetful and I think her mind is slipping. I'll admit I got a little short with her, but I made things right and all is well. I need to remember to be more patient. My daughter will most likely give me the "silent treatment" all day which is greatly preferred over our typical conversations. Such it is in this, the "Sandwich Generation."

A new Hep C article came out in the Journal of the American Family Physician. Here's the link:
http://cme.medscape.com/viewarticle/723198?src=cmenews&uac=119460BJ

The new treatment program is coming very close to FDA approval. The problem for me is that my liver is already far too damaged. I could try it; it would involve another round of standard treatment with the addition of a third drug. I am not sure I'd be a candidate since as of 2006 I was already in Stage III liver disease. Stage IV is all-out cirrhosis and I know I'm close. I was close when they staged me at III - there was some evidence of cirrhosis at that time so it's pretty doubtful I'd meet treatment criteria. Plus I just don't know about another round of treatment - AKA "HELL"; I'd have to be pretty sure it would work. Like at least 98%.

Now I'll just go on with my day and try to be happy. Life is really a gift, but to be honest - I'm not feelin' it today.

June 11, 2010

Well, I was planning on writing a happy blog today. I'd been feeling better.
Ugh. So much for positive thinking.
I had to go to my doctor's office today to get some blood work - it's about 40 minutes away.
My husband worked from home today to take me since I hadn't been feeling well this week and thought I probably shouldn't risk the drive. Getting from here to there requires driving in very heavy traffic. So he planned to drive me on his lunch hour.
We got back and I was not feeling well at all. It was very hot and muggy here; my 19 year-old was home with a bunch of friends watching World Cup Soccer.
I sat down to eat.
The next thing I remember was I was staring at the ceiling of my kitchen with my husband towering over me.
I completely passed out, and he witnessed the whole thing. He said I was drenched in sweat and my body was extremely cold. I remember nothing.
Then I started to feel like I was going to throw up; I retched and retched. He hollered for Monica and together they got me to the guest bedroom. Then I passed out again. The next thing I remember was waking up in the guest bedroom wondering "what happened?"
I felt really weak.
I still feel very weak.
I have no idea what caused me to pass out, but boy - I was out cold.
So much for happy blogs!
We'll see what tomorrow brings.
As for tonight, I am quite certain I'll be taking it easy.

June 10, 2010

Ahh....treatment. I simply must talk about treatment. I have genotype 3a (very rare in the US) , which is a "better" type because it responds to treatment 87% of time. Standard treatment is pegylated interferon and ribavirin in combination, for either 24 or 48 weeks, depending on genotype. My first round of treatment in 2006 was for 24 weeks. About 50% of all people complete the treatment; many simply give up because it's a form of chemotherapy and it makes you really sick. But I got through all 24 weeks and worked full-time. Looking back, I don't know how I did it - I had many side effects: hair loss, low blood counts, extreme fatigue, nausea, psoriasis, thyroid problems. Every time they checked my blood while I was on treatment, the HCV was undetectable. I was determined to finish and I was confident it would work (87% chance is pretty good, right?). After completion of treatment, it takes quite awhile for your body to get back to normal but most people begin to feel pretty well at about 12 weeks and that's when they check your blood to see if the treatment worked. By 10 weeks post-treatment, I wasn't feeling well so we had my blood sent in a bit early. The results were a return of HCV to pre-treatment levels. That was one of the worst days of my life.

My hepatologist recommended that since I had responded to treatment (undetectable HCV), that maybe I needed to be on treatment a little longer and have a stronger dose of ribavirin. So, in September 2007 I began round #2. I wasn't fully recovered from round #1 - I still had psoriasis and I was weak but it was my only chance. My family REALLY wanted me to do it, so I agreed. I was still working (I don't know how) and the higher doses really got to me. I had all the same side effects as before plus a few new ones. By the time I was halfway through, I had to quit working - I couldn't even walk from the parking lot to my office due to being short of breath. I was like a walking zombie. I remember nothing about the final 3 months of treatment - I was flat out in bed. I was near death, my blood counts were so low that I was given neupogen to boost bone marrow and I was taking 12 different medications just to get me through the treatment. I was hospitalized 2 times during this period and I don't remember much, but I finished all 48 weeks. I did bounce back more quickly after the second round and waited for results of that 12 week post treatment blood test. The results were devastating: HCV back to pre-treatment levels. That was in August 2008 and my doctor gave me 2 years to live without needing a transplant. Well, it's almost been 2 years and I am still very much alive. I don't feel well most of the time and my liver is one big mass of scar tissue. Going through two rounds of that type of chemotherapy is not easy, but with my odds I gave it my best shot.