+19/48 weeks

Well here it is. 48 weeks. That was the amount of time I was supposed to be in treatment. As it turned out, I am already 19 weeks out of failed treatment.

I always said that if I lined up at the start that I would go through to the finish. I never finish fast or pretty, but I make distance.

So what is there left to say?

A lot: mostly thanks and encouragement.

I cannot thank my wife enough for putting up with me period. Putting up with the treatment was rough on her. There wasn’t much she could do for me, and even less that I would let her. I read a lot of war stories of people not getting the support while in treatment. I know its rough to watch. Treatment really inerrupts that status quo at home, nothing is the same. People are used to seeing me strong, and I just wasn’t. I an forever grateful for my lady, my family, and my friends who stood by and encouraged and supported me along this incredible stretch of the journey. Like I said, it wasn’t fast and it wasn’t pretty (okay, I’ve never done pretty), but we made distance and the tough miles are over. Thank you all.

I want to thank the staff at GIGeorgia who did the clinical trial. They gave me a shot (oh wait, I gave my own shots – but you know what I mean) and treated me well. Good people. I hope everyone else going through treatment are as fortunate. Thanks Cathy.

Now a last word of encouragement. I know we are supposed to be the silent epidemic. I know when people find out we have Hep C they think we all have a history of drug abuse. Forget what they say, speak out. Don’t be silent and don’t be ashamed. Have the courage to take treatment if its offered, its the only chance you have with this disease (and for your own sake, follow their directions). Keep a positive attitude and direction in your life. Thank you for letting me know I am not alone, because I (and you) surely are not. Thank you for sharing this part of the journey.

As I have said in my columns: Thanks for listening, for the opportunity to be of service, and for sharing the journey.

Until again,
Love and pride, strength and honor
Lynn

+18/47

Sorry I am a few days late. Things have been busy. I guess that is a good thing.

Not much new to report. Its like any recovery, one day at a time.

Most of the time I feel like things are getting better, other times I am reminded of what I have been through. As I have said before, its goes fast and comes back slowly.

So many times I am grateful for maintaining some sense of discipline and direction while I was in treatment so it would be easier after treatment.

I do believe that we are creatures of habit. I know, wth all my psychology, philosophy, or metaphysical background, your would think I am much deeper. But no, alas, it is not judgment or karma, it is simply what it is.

And what it is is okay.

I always wanted to live a life with stories to tell. And this is just another one. And probably not the most exciting one either.

So all I can do is encourage others to maintain their direction and discipline, show your appreciate for those supporting you on your journey, and realize you are not alone.

The deal was 48 weeks. That will be up next week. I may stop writing and start editing then. I want to add some hinsight or reflections on this part of my journey. Then make it avaialable to anyone who may benefit from it.

So, to those who are still reading, reminding me, and showing support, thank you from that place deep inside me that I seldom if ever let anyone see or touch.

Until again,
Love and pride, strength and honor,
Lynn

VC: 1,150,000

Got my blood labs back from 09/16/09.

As expected, the viral count climbs back towards my normal baseline. I started at 1,830,000, cleared to undetectable at week 12, and now am at 1,150,000. Life goes on as normal.

My first blood labs put my cholesterol at 99. Yes double digits again (I used to be there). But it went up to 110. No complaints. Its a genetic thing.

My liver enzyme (ATL) also continue to climbed back above the normal limits. I started at 61 (high), dropped during treatment to 16, and am now slightly above normal at 45.

Next blood text I need to fast first. But that’s not for a couple more weeks. Lucky me.

So it goes.

Until again,
Lynn

+17/46

Hit the treadmill this morning for 2 miles and the pool for 40 lengths, before I hit the sauna for 15 minutes of Chi Gung.

Yesterday was Aikido and Escrima in the morning. Didn’t spin and lift in the afternoon.

No new numbers. I have called and asked that they call me back with the numbers to keep my records up to date.

Things continue well. Slower than I would like, but in the right direction.

You would think that 17 weeks after you stop medication it would be out of your system. Yet I seem to still have a bit of a drug rash. But if that’s the worst I can say, then hey shut up.

Hair is funny. I didn”t cut it during treatment since it was thinning but not totally falling out. Now as it grows back in I have my longer hair with these little spikey thingies sticking up.

The weight is back up for all the wrong reason. Food taste good again and the apetite it great. I have always been a bit of a muncher when I sit and work, and now all I do is sit and work in the privacy of my own home office with some good jazz in the background. Teaching online has spoiled me for sure.

So the daily discipline and direction continue. Nothing new to report. Like most things in my life its eyes open and forward one day at a time.

Until again,
Love and pride, strength and honor,
Lynn

+16/45

Yesterday, Thursday 09/17/2009, was my 16th week since I relapsed and stopped treatment and things continue well.

Had a follow visit with the clinical trial on Wednesday. Got my first (5th week post treatment) blood test back.

Yes as expected, my viral counted which started at 1,830,000, went to undected or cleared by week 12, and resurfaced in week 16, was back up to 385,000. We knew that was happening.

Remember my anemia? I don’t either, guess I was too tired to care. My base line HgB (hemoglobin) was 15.8, dropped to 10.1, was back to 14.7. My WBC (white blood cell) counted started at 5.43, bottomed at 1.38, was back to 6.12. My Pit Ct (platlet count) started at 219, sank to 98, was back to 207. So guess I am not anemic anymore (and it was such a good excuse).

So as the blood counts go up (which is a good thing) so does the viral count (which isn’t a good thing, but its what it is).

Now the count that started everything was my ATL (has something to do with the liver enzymes) count had been above normal (spiked) and caused the further test that finally diganosed my Hep C. Well it started at 61, dropped to 16, but is now only 39. So perhaps my liver is functioning a bit better.

I can get the results from the blood drawn Wednesday next week. We will be able to see the trends and directions.

Taste buds are fine and so is the apetite (darn it), so the weight has come back on.

Continue to hit the dojo 3 times a week and the gym 3-4 times. Trying the get the cardio back. Still get winded easily. But, there is a steady improvement.

Still have some drug rash and some scaring.

Keeping a positive attitude and appreciate my great support system.

The nurses and doctors began to talk about some new trials possibly next year (something about small molecules) and that I may be eligible. They also reminded me that at my age (ouch) because I only have some liver inflamation (no scaring) that I would probably die with the Hep C not because of it. With all the inconvenience that the 6 months created, I’ll proably just live with it.

I have another appointment for follow up in 6 weeks.

Thanks for hanging in there with me.

Until again,
Love and pride, strength and honor,
Lynn

+15/44

Yesterday was week 15 since I stopped treatment because the viral count came back and went up while the blood count kept going down. All the while on 3 medications (2 standard of care and 1 state of the viral art). And it/I failed.

I don’t have a problem stating it that way (“failed”) because its a statement of fact not a judgment. The medication appears to be working according to research statistics and I know I stayed on schedule and did everything I was supposed to do. Even early on in the treatment, everything went well. Even actually cleared. Then “we” didn’t work well together and “we” failed at the task.

So 3 months later, I am still trying to get back what I lost in 6 months of treatment. Losing it always seems faster than getting it back.

Still have good days and bad days, but at least I know it now and there appear to be more good days.

Drug rash and fatigue still continue along with trouble sleeping (better than the insomnia or sleeping all the time).

I am actually reading and finishing books. I missed that. Between the drug fog and the fatigue, I couldn’t read at all. Just couldn’t stay focused or stay awake. But I am reading and enjoying it now.

Still hitting the Dojo and gym on a regular basis.

Got a call yesterday form the clinical trial and its time for a follow up draining of the blood. Going in next week. Wonder what the numbers will be. At least this time when the viral load goes up the blood count will too. Togetherness, what a concept.

Getting back to who I used to be with a bit more humility. When I was young I thought I was invincible and it seemed like I was. But this little microscopic viral thing can take you down. And I still have it.

Saw a news story that they found some new antibodies in the HIV/AIDs (another viral disease) research that was promising. Most of the new viral treatments have come from people looking into HIV/AIDs. Don’t know what that means for HCV, but probable means nothing for me.

So, recovery continues as does this blog and my journey. This was just a temporary inconvenience and detour, but I don’t think I actually got too far off track (like I really know where the tracks are or where they are headed – yea right!).

So it goes.
Love and pride, strength and honor,

Until again,
Lynn

+14/43 weeks

My wife says I agreed to write for 48 weeks, so I cannot stop now even though there isn’t much to say.

Life is good and going in the right direction. That’s a good thing.

Every so often I am reminded that I just went through a pretty rough time and it really wasn’t all that long ago. But here I am, often forgetting and getting on with my life.

I still have some scars form the drug rash. My hair is still thin but growing in. My apetite is back and I am gaining weight, too much weight too fast.

I guess the sad thing is that even though I am certainly getting better, I am left with the fact that I still have a virus. I am still sick and will be for the rest of my life. And that’s what is. Statement of fact. It is something that I/we will have to stay mindful of.

Life is good. No regrets.

Until again,
Love and pride, strenght and honor.

+13/42 weeks

13 weeks after the failed clinical trials. Its sometimes hard to remember going through it. Of course I was in a somewhat drug induced brain fog and sleeping through the enemia. But hey, the 6 months came and went. As I said, a temporary inconveneince for a possible long term solution.

Recovery goes good. I still train int 4 different martial arts 3 times a week. Hit the pool and sauna 3 mornings and the bike and weight another 3-4 afternoon.

Haven’t gone back on the cafeine. Why bother?

Don’t feel so fatigued or overwhelmed. Still a bit emotional.

Beginning to think about future projects.

Life is good.

Thanks for listening.

Until again,
Love and pride, stength and honor.

+12/41 weeks

Believe it or not, its been 12 weeks now that I have stopped (failed) treatment. Meaning its been 41 weeks. If you count the lead in time, well lets not.

Recovery continues to go in the right direction. I do get frustrated that I am not in the shape I want to be yet. But to be honest, I wasn’t in the shape I wanted to be when I began. So I guess I can’t use it as an excuse. Especially now that I’ve told you.

Working out every day, gym and dojo, sometimes both.

Keeping it low sugar and low carbs. Green and alkaline.

Drug rash (without the drugs) continues.

Hair is growing back. Still look funny. Some long and thin, others short and standing up (but its fine too so you cannot really see it).

Only a few people continue to ask. Which is nice that people ask and nice that they forgot. Some didn’t even know, or they just think I am old. Oh wait a minute I am.

So I said I would write this for 48 weeks (thinking that would be just treatment), so I have a few more to go. Then I’ll pull it off, add some reflections, run it up a flag pole and see if anyone salutes it (meaning publish it).

My wife still is my support through the whole thing. I think she is less stressed about it now and we are both glad the worst is behind us.

Thanks for listening.

Until again,
Love and pride, stength and honor,

+11/40 weeks

Recovery continues well.

I am glad that I maintained some discipline during treatment because it helps the discipline now in getting back what I loss.

Still hitting the Dojo 3 times a week and the gym about the same. Started swimming and taking saunas in the morning too. Detoxification is going well.

Less insomnia, but I found tha over-the-counter sleep aids are just antihistimines, which are very cheap and make you drowsey enough.

Still trying to eat green/alkaline and take my green vitamin/mineral tablets.

Sometime being sick helps you appreciate health.

Found out the drug brain fog (the one from treatment, not the 60s) was worse than I thought. There are certain things that I don’t remember. Guess they are stored in the other state-specific state of consciousness. Have to rethink and redo somethings. So it goes. A small price.

So, not really too much to report about recovery. Its a one day at a time thing, yet its certainly headed in the right direction.

A few people have found my blog from web searches on HCV or from the forums. I give you my full encouragement and support. My compliments and compassion for the courage shown in facing our silent epidemic. I wish you all clearing and recovery.

My deepest appreciation to my family and friends who watched me struggle this year and my compassion for making them helpless spectators to my journey. You have no idea what that does to my heart. Thank you all.

Until again,
Love and pride, stength and honor,
Lynn