Thursday, June 23, 2011

Hep C: good news

Most people don't know that I have Hepatitis C.   I am a HepC survivor, you could say.  I count myself among the lucky.  Hepatitis C is no joke, although I've been assured that it's something I will most assuredly die with, rather than from. Today's news in the SF Chronicle -- about the newly-approved Invicek and the possibility of actual cure for HepC -- is great and so sent me traipsing down the memory lane.

Six years ago at this time, 2005, I was halfway through 6 months of treatment for Hep C.  To be clear, even though I had elevated enzymes and platelets in my bloodwork (which is what led to the HepC test in the first place), I had never been sick from HepC, didn't show signs of liver damage, and so -- also thanks to gender and the amount of suspected time I'd had the virus -- was in the ideal group for the "difficult treatment" to be most effective.  And most effective didn't guarantee cure.  The Chronicle article does a neat job of summarizing the treatment experience:
Treatment is a toxic cocktail of weekly intravenous chemotherapy drugs and an older antiviral that patients took for at least 48 weeks - if they could tolerate the side effects, which included flu-like symptoms, anemia and depression. The treatment didn't reach the hepatitis C virus specifically, but boosted the patient's immune system to help it fight off the infection.
The treatment, in other words, is a total crap-shoot.  Most people are completely debilitated by it, some have to quit, and none of us -- none -- at the end could be assured of cure, just maybe better counts, a stronger system, a somewhat better chance of avoiding liver disease and/or cancer.

And yet I jumped on the possibility.  Why not?  I figured I'd rather try to kick the ass of the disease, beat it down, come out the winner, than do nothing, just know it's there, lurking. So I did it.  I self-administered my first chemo shot in the doctor's office, a little training run, pinching some belly fat between index and thumb, picked up my Sharps container, and we were off. 

Basically I felt like shit for 5 months, a gradual miserable decline that robbed me of joie de vivre and reduced my activity level from running every day and yoga several times a week, to slowly perambulating around the block and yoga several times a week.  I say 5 months because it took at least a month on the front-end for me to begin to feel the cumulative drag of the experience.  I kept a diary, wrote everything down, so even if I don't remember perfectly, I have a record.  Exercise, though less vigorous than I would have liked, saved me.  I went into it reasonably strong, and that strength -- and my sweethearts -- sustained me throughout.  Still, I felt like I was hanging on by my fingernails.

Yoga helped me so much.  I was fairly new in my practice then, but I know that coming to the mat regularly, being taught through the poses, was so good for me.

I lost my taste for spicy food.  The inside of my mouth was super sensitive.  I ate white rice and saltine crackers for 5 of the 6 months.  Nothing tasted good.  Everything made me feel worse. I felt tired all the time, just dragging, sad.

On the up-side, I lost a ton of weight.  I did appreciate that part.  

By the end I was so accustomed to the shots that I got a little sloppy, didn’t even sit down, could have done them with my eyes closed.

It’s not uncommon for people to take a leave of absence from work during HepC treatment.  A lot of people go out on disability.  They’re in bed, totally hammered by the side effects.  They can’t work.  They can’t take care of themselves.  It’s a freaking nightmare.  For whatever reason, that possibility, of leave, never occurred to me.  I worked throughout.  I never stopped.  I probably couldn’t have, financially, not worked.  And anyway, it would have been worse for me not to work, since working forced me to get up every day and go somewhere and be something besides a wasted little shell of me.  But I won’t lie: it was super-hard.  I felt just horrible for just so long.  And it was so hard to put up with bullshit, harder than usual, when I was just absolutely sucked-dry by the treatment, skinny and weak. 

I reminded myself throughout that I had chosen treatment.  No one had made me do it.  I had decided that I was willing to try it, to take the virus on.  So yeah, I felt really bad, but at least I was doing something.

At the conclusion of all of this,the final bloodwork found the virus to be undetectable.  That’s the best outcome you could hope for.  Still there, but in such small quantities that it doesn’t count.  But still there.

I had some bloodwork done recently and was alarmed at my platelet count. I called up the spreadsheet I kept during treatment – that’s right, a notebook and a spreadsheet, that’s me – and compared.  The count is higher now than it was at the beginning of treatment.  What can that mean?  It sent me into a minor spiral of worry.  Oh shit, I really don’t want to go through that again.  What if I have to go through that again?  OK, the weight loss would be nice, but really, what if I have to go through that again?

Now, though, I can let that go.  At least if I have to go through it again, they’ll add this new Invicek to the mix and I can be, actually, really, cured.  It would still be really, really hard, but it would be worth it.

1 comment:

Janna said...

You are strong and you can do it if you have glad to hear they came up with this new treatment, I know a few friends who have done the same as you, one had to do it twice but it seems to be ok for now. This new treatment offers new hope!