I recently came to the realization that I write to process my life. And not that my life has significantly changed since October, but I guess it kind of has. I’m sure that’s true for everyone, that the only constant in life is change. Now don’t get me wrong many things have stayed the same. Josh is still around (my steroid crazies didn’t send him running for the hills or convince me to get ‘rid’ of him in one way or another), my parents continue to be my biggest cheerleaders (a terrifying description of my dad), Jax still persistently shoves a ball in my direction for the sole purpose of play, and Z still likes to see my face monthly. In all sincerity, he really has been my longest relationship (since March of 2014). My visits with him however, are less about my cancer and more about this obnoxious autoimmune lung disease and steroid side effects.
So as a quick update, since it has been awhile, I am the fortunate benefactor of a weird side effect of my clinical trial. I have reoccurring pneumonitis. Left untreated it can function a little like cystic fibrosis, creating scar tissue in your lungs and sucking the air out of your lungs. Luckily for me, mine has never left any permanent damage thanks to steroids and now a Cellcept (a med usually given to organ transplant patients to prevent rejections). In February, I could barely walk 10 feet without telling people I had just run the Boston marathon, because that’s how I imagine it would have felt. So after a pesky bronchoscopy and new course of steroids, my lungs returned to normal. It was also at this time, they added Cellcept and hoped it would eventually replace the Prednisone (thank God). May was when I could finally taper off the steroids (which I had been on off and on for a little over a year). They had already wreaked havoc on my mind and body. I gained 47 pounds and was pretty sure I was going crazy. In June, there was some concern that the Cellcept was not quite as effective as the steroids and that maybe they needed to be reintroduced. I was not about to let that happen and for the first time in two and half years, I lost it in the doctor’s office. My poor pulminologist. I told him I couldn’t, more importantly, wouldn’t go back on steroids. That I would take my chances with slightly decreased lung function as long as I could get back to my life. And that’s where I am now, in a cycle of change to get back to my life.
Ok. Great. Except the life I had before Hodge is not the life I have now. I never realized that even when you no longer have cancer, cancer still has you. It is indefinitely a part of your past, present and future. Someone in my support group asked what was the hardest thing about your experience and while most people think it’s the treatments, it isn’t for most of us. I think the hardest part for me was watching everyone else move on with their lives (getting married, having babies, buying houses, taking trips) all while I felt like I was standing still, stuck in a rut with Hodge. And it didn’t matter when I had good days, great days even, they somehow felt less than. And even now that I’ve been in remission for about a year, the reminders are there. I think in some ways it’s like being in an abusive relationship. When it’s over you have to start over and figure out who you are now. Good thing for me I like change and the notion that you can always reinvent yourself. So that’s where I am…in the process of figuring out what makes up the best version of me. So I’ll keep the constants, accept the changes, and pursue new things to figure it all out.
So rather than being pretty, witty and cancerous, I’m going to try for pretty, witty and happy and healthy in my own body.