It has been impossible to write for the last few months. I have started many times, but lacking the enthusiasm and will to say much, none of them were posted. January we returned from Mexico with a healthy, happy daughter and my autoimmune disease barely held at bay. I jumped into hardcore treatment in the hopes that we can combat the rheumatoid arthritis to the point that I avoid permanent damage. My age, 43, has my doctors on high alert for many reasons, one is that I will have to be on treatment for the rest of my life so deciding treatment is very important, also I am relatively young so we all want my life to be as normal as possible while I deal with this. As a result, we hit this mother with everything we could...a low dose chemo, a pain reliever like IBuprofin at 1500mg per day (for reference, y'all take 1-2 at 200mg if needed), an antacid to protect my stomach from the heavy dose of meds, hydroxycholorquine to help my immune system stop attacking itself, folic acid so my hair doesn't fall out and an antidepressant so I don't off myself. Sundays I do my self-injected chemo... then turn into a zombie for 2-3 days. I can not begin to describe what this zombie stage is like, my body hates this drug and instead of getting used to it and adjusting like the specialist had hoped, I have actually had my side effects increase until I am in utter agony. A recent call to the doctor had me pleading, actually begging for a reduced dose, crying that I would rather have RA pain than what I am experiencing.
How am I sitting here today informing you of all of this if I am so miserable? Well, after months of torture, my doctors agreed to switch my treatment from the chemo drug. Unfortunately this must be done very slowly and methodically because going off it can also have dire results. So last week I was lowered from 6 units to 5 units and will stick here for another month at least. The new medication on the other hand is every other week and so far, truly amazing. I have a boost of energy, not unlike cocaine... errr so I am told (my parents read this blog), and for a few days I feel like my old self again! It feels like I borrowed a body, the sensation is bizarre, I stop feeling exhausted, flu like and sore. I have to admit I wish I could take it ALL the time. The brain fog clears and I can concentrate, I feel actually happy and even remember what it was like to enjoy my life. I am immensely grateful to all the scientists out there that create these drugs and that my insurance covers it.
So what is this magic drug? It is a biologic called Humira. You've seen the commercials I'm sure, but what you might not know is that this drug, the most expensive drug on the planet (not a joke) actually changes the DNA in your cells to alter how your body's immune system reacts. It is pretty fascinating, if I don't think about the fact that is uses mouse cell structure. This mousy feature causes me to reminisce about the funniest put down I have ever had.
When I was in college I worked for the theatre department ticket office and had given a friend a discount (bad employee!), she went home and sent her roommate in thinking I would give her a discount as well, I did not. When the roommate returned home she was furious and the friend called to complain, the conversation went as follows...
Friend: "My roommate just had a horrible experience getting tickets! She said the girl that helped her refused to give her a discount and was horrible!"
Me: "Yes, that was me, I can't just give anyone a discount"
Friend: "No I'm sure it wasn't, she said this girl was a total bitch. She says she had a sharp pointy face and mousy brown hair"
I looked around the office, I was absolutely the only person in the office that could possibly fit that description. I told my friend this and got off the phone in shock. I couldn't even be offended, it was the most creative and wild put down I had ever been given. I'd never seen myself as having a sharp pointy face, but under closer inspection I guess it kinda is. I also spend a lot of time and money to get highlights, evidently that was a sign I was overdue for a visit to the hairdresser! Anyway, now as I inject this mousy medication into my leg every other week, my family and I laugh and laugh and laugh about how I may be getting an even more sharp pointy face with even more mousy like brown hair.
Ahhhh... it feels good to laugh again. I am far from in the clear, but I see the possibility in the future. The hardest part of this has been the claustrophobia of being locked in to a disease that will never be cured, treated with a drug that makes me want to die. It is a soul crushing experience to be trapped in this reality and so soon after recovering from a brain tumor is beyond unfair. But today is a good day. Today, the day after my Humira shot, I am seated out on my beautiful patio, feeling human again. Well mostly human ...and a little mousy.
No comments:
Post a Comment