That may be a bit of an exaggeration, but I am pretty unhappy right now. I need to vent, and choose to do so here.
I went to see my rheumatologist this morning. I need to resume treatment for my psoriatic arthritis, as it has been flaring. Chemo kept it in check, but now chemo is over. It’s back with a vengeance.
I was, of course, hoping to go back to my old treatment (Enbrel), which worked very well. Enbrel is a tumor necrosis factor (tnf) blocker. It is unknown what effect, if any, Enbrel has on existing cancer. Under side effects, it is stated that Enbrel has been known to cause lymphoma and other cancers.
I had a feeling my rheumatologist wouldn’t want to put me back on Enbrel, and that is exactly what he said this morning. He said it’s too risky. He doesn’t know how it would act in someone who so recently had cancer. He’s not willing to go there. At least not yet. He wants me to take methotrexate instead.
Fucking methotrexate. It’s the first drug I took for this condition when I was diagnosed back in 2005. The insurance companies force patients to try this treatment first because it is way cheaper than the drugs like Enbrel. Enbrel costs about $2000/month. Methotrexate costs about $10/month.
Methotrexate is actually a chemo drug. Given in smaller doses, it has been found to prevent inflammation and joint damage in individuals with certain autoimmune diseases, like psoriatic arthritis.
I took it for about 6 months back in 2005. It didn’t work very well. It had some crappy side effects. I can’t remember all of them now. That feels like a really long time ago. What I do know is that methotrexate is very hard on the liver. While taking it, you are not supposed to consume alcoholic beverages. This is a pain in the ass, and I’m not happy about it, but what-the-fuck-ever.
I asked him if it would affect my hair growth. He said it could. I expressed my displeasure. He said if that happened he would prescribe more folic acid, which should help. Then this happened:
Him: Patients, especially women, are always more concerned with these types of side effects than doctors are.
Me: Right, because we are the ones that actually have to endure them.
I want to start out with saying I love my rheumatologist. He is a sweet and intelligent man. I think he’s a great doctor. However, what the fuck is up with people completely discounting the feelings of patients?
I am the one who lost all of my hair.
I am the one with no eyebrows.
I am the one who has no breasts.
I am the one who now has 13 marks on her body (scars/tattoos) because of cancer.
I am the one who endured 8 rounds of chemo.
I am the one who will endure 36 rounds of radiation.
I am the one.
Me. Not you.
I am the one.
So of course I care more than you do. I care a lot fucking more. This is my fucking life. I am the one who will sit here and worry that my hair won’t grow back. I am the one who won’t be able to have a drink with my friends. I am the one who will have even more poison coursing through my body. So please excuse me if I really don’t give a fuck what you think about the side effects.
I’m not mad at him. I get it. He’s concerned for my well being. He doesn’t want to give me a drug that could cause the cancer to return. I appreciate that. I’m just so frustrated. I want something to go right for once.
Sometimes on bad days, like today, it becomes difficult to remember why I am fighting so hard for my health. If I allow myself to think back on my life, I find it difficult to find the good. I think about my horrible childhood. I think about the abuse and neglect. I think about all of the mental health issues. I think about all the physical health issues. I’m tired, and I don’t want to do this anymore. What’s the point?
But then I remember the good things: my amazing child, my wonderful boyfriend, my awesome friends, my successful law practice, and then I tell myself to suck it up.
I’m going to make sure I really enjoy my last drink.