A lot has happened in the last few months. Not only did I start the Abbvie clinical trial, but I am 2 months down, and I am testing as Hepatitis C FREE! I am still amazed every time I say it.
That was the biggest news, but secondly, we had the Donate Life Run/Walk on April 26th, and I smashed my goal of 25 team members! 35 Team Albertonians this year!! Hehe. It is always an amazing day, but seeing how many people came out to support us this year, was definitely the icing on the cake. Thank you to everyone who was there and/or who donated to the cause. I still have T-shirts and little gifts to send out to some people. I also have personal items that I was so careful to watch for my team members, and then forgot to give them back before I went home. :)
Normally, I am a lot more sociable, but these last few months I haven't even really updated anyone on my health. Maybe antisocial is a side effect? The side effects are not as bad as the interferon treatment though. I don't throw up every day, and I'm not losing clumps of hair, but I do have a quite a few of the same issues. The most serious physical side effects for me now are the gastroparesis and anemia. Every time my liver starts to fail, my stomach does too. The doctors are hoping though, that this time it is just because of the treatment and that once I am done with it, my stomach will start to function again (or better at least).
The anemia was an easy fix, in theory. I have now started taking Epogen shots 3 times a week to raise the red blood cells. Though, that has it's own lovely side effects, mostly sore bones and anxiety. Getting the prescription was the main problem. My doctor had started to lower the dose of one of the trial medicines, Ribavirin (it is what attacks the red blood cells) but I was becoming more anemic; shortness of breath, fatigue, heart palpitations, dizziness... and we couldn't afford the co-pay of the Epogen, so my doctor stopped the Ribavirin completely until I could get it. We tried a few things, but honestly I couldn't ask Jason to max out his credit card just to pay for part of the first month. I was also scared that stopping one of the three meds would cause the Hep C to start coming back or mutate... That's when I said forget it, I've done all that I can do. I'm done worrying about it. If I need the medicine, God will just have to take this one. A few days later, a dear friend put the entire co-pay in our bank account. All of it. If you know me, then you know I have problems with asking for anything, but with my friend, she did not ask if I needed or wanted help, she just did it. Forced me really. Hehe. The world is filled with Angels, and I've got quite a few with me. Every time I begin to get discouraged, something happens that lifts my spirits. I think that ever since that day, the way I am looking at my situation has started to change.
Lately it has been a little hard to stay positive. Everyone tells me just to remember that it is just the medicine that is making me sick, and trust me, I know this. Obviously I can handle physical pain, throwing up daily for years, being connected to tubes and bags, I can even keep up with a home (somewhat) during it all. But, everything I do is a push, and nothing in the world is slowing down just because I can't keep up. Most of my life has been sprinkled with pain and sickness, and in the end I always knew I was going to live a shorter life and most likely die a painful death in the hospital. Sometimes I would wonder how much suffering I was willing to go through just to maybe have a few healthy years before it ends like that anyway. My answer was always that I would go through whatever it took to survive.
When I went in for my clinic appointment on Friday, I was hoping for numbers to be off. Something that they could just regulate with a pill or something. Instead, my doctor recommended more rest, someone to help me with my errands, and to see a therapist (because I have been through a lot. seriously.) He also told me that if the side effects are getting too tough, we can stop. There is a possibility that if I complete just 3 months of the treatment, the Hepatitis C will not come back. There are also some new treatments that will be coming out within the next year or two that may not even have this many side effects, and with my numbers the way they are, I should have time. When he said it though, I nearly laughed. Why would I stop now that I am so close? After, I started thinking of all of these years I have wasted, just trying to survive for extra years that I am not guaranteed. What if I did stop this treatment at 3 months and the Hep C doesn't come back, or what if it does, and instead of filling my body with more drugs, more invasive procedures, more time in a hospital bed, I just live as happy and healthy I can, enjoying what I have already been given. Everything that I have gone through has changed and scarred everyone around me. And while I know what is in my heart, and the person I could be, no one else has been able to see that person for a long time. I have no guarantees, if I continue treatment, if I don't... and after 8 years of surviving, I am ready to put my health into Gods hands, and only worry about showing my son how to truly live with whatever situation you are given. My only fear is that he will see this as giving up. I'm not sure if anyone who hasn't been through a similar situation would see it as anything else. It's a big decision, and my next appointment isn't for a few weeks, so who knows how I'll feel by then. In the meantime my framily, just remember that I love you all, and even if I don't pick up the phone, I think about you often.