Monday, August 26, 2013

Hold yer horses

My doctor emailed me this morning. Unfortunately, they are no longer accepting new patients for the Arizona clinical trial. :( Some other interferon-free trials should be coming out soon, and he seems pretty confident that it will be out before I get too sick. At the end of his email, he told me not to let this preoccupy me. "To live life fully, until treatment is possible." But oh, I already had it all planned out in my head. I would have been done with treatment just before Christmas, and I was really going to celebrate the gift of being healthy. I was going to be like Oprah (with my baked goods.) "You get a box of cookies, you get a box of cookies, you get a box of cookies!" Cherry-nut cookies, pecan puffs, sugar cookies, fudge, barks, and breads... Oh ya, it was going to be awesome. It's still going to be awesome of course, but only a select few get my boxes of cookies. Hehe. I was imagining what it would be like to be 100% healthy. Being here to watch River graduate from high school... get married. Right after treatment, we were going to start the process of adopting a child (or two or three) again. I'd be able to work and help save for a house, or at least pay off all my medical bills. Yup, I had it all planned out, even though I said I wouldn't get my hopes up. I just feel like everything is in limbo right now. It could be worse though. So I'm going to try and put it out of my head, along with my "bridging" fibrosis. Enjoy life, instead of just waiting for treatment. It will happen when it is supposed to. I will not allow this stupid disease to have a place in my mind... And hopefully my body too, soon.

Saturday, August 10, 2013

Treatment... Again

Friday's clinic appointment went pretty well. I left feeling much better than I did after my July appointment. Mostly because I had taken River with me to that one, but hearing that they wanted me to treat my Hepatitis C (again) sooner rather than later, was also quite nerve-wracking. After River asked my doctor what "rank" he was in the hospital, explained military ranks to him, and informed him of his rigorous exercise routine with his dads 4 pound weight and stress ball, my doctor was finally able to talk to me more about my April biopsy results. Bridging fibrosis is basically the last stage before cirrhosis, and it took my newest little liver less than 2 years to get to this point. Not good. "But we're not giving up yet!" He said. They have some new interferon-free clinical trials coming out, and they want to get me in on one. So much for being "warehoused" for a while. This is good though. If I can get rid of this freaking disease, I could easily have a few decades left with this little liver. I am trying not to think about the things that could go wrong. It didn't help that I didn't have any details, so my mind was free to think up all kinds of horrible side effects (like zombieism, and shady clinical trials) until yesterday. It was definitely better than I had thought. There will be no interferon injections with this trial. (Interferon is a form of chemo, and my last 3 attempts to treat had it. No fun.) This will be 3 pills, it is only 12 to 24 weeks, (instead of 12 months) and it is called... ABT-450/r/ABT-267, ABT-333, and Ribavirin. My first order of business when I enter the trial, will be to change the names. The side effects seem like the usual suspects. Nausea, vomiting, fatigue, and headaches. But (for the test subjects pre-transplant) the side effects were manageable. The most difficult part is going to be getting to my appointments (hopefully). They only have studies in certain states, and the closest one to me is in Phoenix, Arizona. They have one in Barcelona, Spain too, but supposedly they won't pay for me to get there either. Hehe. I couldn't find too much more information on-line, but I think I read that it had an over 90% success rate so far. I can't even imagine what it feels like to be completely healthy. Not that I've been letting my achy bones and tired body get in the way of anything.
This summer was a busy one (well, I'm probably the only one who thinks that in this home). We went the beach, Knotts Berry Farm, California Adventure, the California science center to see the endeavour; we saw fireworks, and celebrated birthdays with family and friends. I had my two liverversaries, our 11th wedding anniversary, and at the end of July, we went on our first annual camping trip with the Albertoni clan. I haven't had that much fun in a long time! I also did my first Donate Life assignment at the Liver Life Walk in July. It was awesome sharing my story with people who had no idea what "Donate life" even was. I have my eCampaign up (here), and today I went to the 2013 ambassadors conference. I am feeling inspired! It is amazing what my two donors have given to me. Even if I don't get decades left, I am so grateful for every extra day I have had with my family and friends!
I hope you are all having (or had) a great summer! River starts second grade on Monday. :-/