Whoa, What is That Smell?!?

 As the swelling of my joints dissipates, my body shrinks (nothing like chemo for a diet plan) and I try to resume an ordinary life outside of the 2 days a week I play like a zombie, I have some strange new things that are adding interest to this experience. And I feel it is my duty to share with all of you.

I have been told that chemo lessens your ability to taste and smell, but I have experienced the opposite. I was already what people would call a Super Taster, someone that can smell and taste things most people can not. Super Tasters excel at wine and food analysis and I must say it does make for some fun party tricks; like name the grape in this wine or what is the secret ingredient in this dish. Mind you it is only fun when I am in the mood and offer it as an observation to oohs and ahhhs, a lot less fun when someone is challenging me out of no where, that gives me massive anxiety and happens far too often. But I digress, the point is that now I have an additional sensitivity in my sense of smell and taste that I am almost pained by it. My absolute love for spicy food has been cut by 80% with the sensation of the heat giving me a tingling tongue and sharp pain. Sweet is too sweet making most desserts cloyingly repugnant, tart is sour up into my sinuses and salty simply abrades my mouth while covering up all other flavors. And smells, OMG smells! People's detergent they wash their clothes with is crazy intense and disturbing, someone that hasn't washed their hair in a few days emanates an oily smell from their scalp, and bad breath makes me gag. It isn't all bad though, I absolutely love sitting outside on my patio with the smells from the neighboring farms far enough away that the smells are pleasant. The flowers growing in the yard  1/4 of a mile away swirl over to me, the char from someone grilling is deliciously pungent and the actual heat that radiates off the grass on a hot day is a mixture of fresh greens, and herbs, almost like a tea. While adding an amazing layer of color, as if seeing in ultraviolet, these new sensory increases feel like an assault I can't escape. Think of it like being forced to keep running at the end of a marathon, a natural human action shoved into an unnatural version of itself. 

This all seems doable... except as the world opens up, I hesitate to join in. I need my mask not only for my now nonexistent immune system, but to protect me from the smells. I am going to be weaned off the chemo and I can't help but wonder if my senses will return to "normal" or if I will have to endure this strange torture forever. I know, I know, definitely not the worst thing to have happen, I was terrified of getting covid and loosing my sense of smell and taste, so this is better right? I realize I must sound insane, maybe I am, after all 'we all go a little crazy sometimes".

Say it to My Sharp Pointy Face

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.