Chemotherapy is a hell of a drug. A month ago, I started my three-month journey with it. It’s been really hard. I’ve thrown up, been too weak to walk, and started to lose some of my hair. When I tell people that I am on it or they notice I am wearing a mask to prevent infections, they automatically assume I have cancer. They feel bad for me. When I tell them I don’t have cancer, they look very confused. When I explain my disease, they are even more confused. I have never once in my life come across someone who knows what my disease is, unless they are a doctor. Even then, some doctors are confused. They tell me there’s no way that I can have that disease. It’s for older people, they say. You’re too young, they say. Your nerves aren’t presenting the typical way, they say. One honest doctor even told me that he had no idea what I was talking about and asked me to educate him on my disease.
When I tell people that I chose this treatment, they seem offended. They ask me why in the world would I chose it. Surely your disease isn’t that serious, they say. You can’t be so rare that you need chemotherapy, they say. What they do not realize, is that they are totally and completely wrong.
Every day I turn on the television and I see at least one commercial about treating cancer, if not more. Some of my friends, my parents friends, and even my family have fought cancer. It is a horrible disease that needs a cure. At the nonprofit I am interning at, a handful of our kids have cancer. I missed having cancer by the grace of God when I was 14.
What I don’t see when I turn on the television is commercials talking about fighting Chronic Inflammatory Demyelinating Polyneuropathy. I don’t see commercials talking about how hard it is to have this disease. I don’t see anyone talking about the horrible treatments we have to endure to stay alive.
It frustrates me. It makes me feel alone in this hard fight.
When you have GBS/CIDP, you go through three main lines of defense for treatments. There are others, but these are the main three, or so my doctor says. The first round is a treatment called IVIG. What that means is that every 2-4 weeks, you go to a treatment center and get hooked up to an IV for days to get pumped full of immunoglobulin so that you can keep on being a “normal” person. If you are unlucky enough to be unresponsive to that treatment, you advance to the second round of treatment. This is when you have a port installed and you go to a treatment center and get hooked up to a machine much like dialysis. Only instead of dialysis, you have your blood taken out of you via the port to be cleaned while simultaneously you are pumped full of human plasma so that you don’t die out due to lack of blood. If you are still unlucky, one of the rare cases, and do not respond to this treatment, like I don’t, you are then presented with options. Option one for the third line of defense is to get a combination of long-term steroids paired with short-term low-dose chemotherapy. Option two is to get short-term high-dose chemotherapy along with a toxic immunosuppressant. You are then allowed to pick your poison, literally.
I chose option one the first time I had a heavy relapse. I was kept in remission for four years. When I relapsed again a year ago, my doctor chose the same treatment because it had worked before. Only this time, it didn’t. So we then began down the road of option two and here I am today.
I am not ashamed that I am one of the rare cases of my disease. I hold that title proudly. I wouldn’t change my life even if I could. However, you can see why I am frustrated. I am frustrated because there is no awareness for my disease. I am frustrated because the only way I can find support in others who have gone through what I have is via Facebook. I thank God I have them but it shouldn’t be like this.
I am frustrated because there is no cure. There are only drugs that will get me stable until I have another relapse. However, I keep fighting because I know that one day there will be a cure. I keep fighting so that someday, hopefully, others won’t have to endure what my support group and I have.
Fearfully&Wonderfully Made 