A processing disorder is an umbrella term for a variety of disorders that impede the way the brain processes information. This is a clinical definition for a real ailment, however I choose to use this term to describe my own processing issues as of late dealing with my cancer. I make it sound as a recent development but when thinking back nearly a year now, I didn’t exactly have a normal response when I was informed of my initial diagnosis either. It is entirely possible that the issue is less a processing issue and more of a selective hearing situation. I can and should admit that I have had selective hearing since childhood. My mom can easily attest to that. It sometimes nicely coincides with my stubborn nature, leading those in my wake flabbergasted and often frustrated by my attitude about a variety of things. And I like to think of it as human nature as it applies to me.
Of course, don’t we all hear what we want to? Choose to believe what makes the most sense to us, even if it lacks common sense or accuracy? Pragmatists would probably argue naught, but I tend to believe the majority of people take advantage of selective hearing as a means of coping with things that go beyond our realm of comfort. Now that doesn’t mean that I have been living this past year allowing my brain to create a fantasy world where I am basically in a Disney movie either. What I am trying to say is that there have been times during this experience when I struggle with how I logically want to handle this and how my emotions sneak attack me. In the very beginning when I would have assumed I would be distraught by the news of my cancer, I took a practical approach inquiring what steps I needed to take to hopefully cure me. As time when on, I was surprised by my completely out of character logical attitude. I tend to believe no one was more surprised than Steph, who had borne witness to my emotional train wreck-like persona more times than I should admit over the past ten years. I often wonder if my brain recognized that falling apart would only complicate things and somehow blocked my emotions from allowing it to happen. Regardless I spend the first six months of my diagnosis feeling positive, hopeful, strong, and in many ways happier than I had been in a long time.
Even when my frontline treatment turned out to be a bust, I was disappointed but my spirits were far from crushed. In fact, Steph and I went on our annual summer vacation to the lake and I got in some R & R to mentally prepare for Round 2. As far as chemo goes ICE kicked my ass in regard to my cell counts, but aside from that I was still standing strong. Except I noticed that my emotions were starting to creep in a little bit more. I was upset that I had to be in the minority 10% of primary refractory people and I was angry at some of the things I couldn’t do, like go to the Blues Festival with my parents, or see Tessa when I had planned to. But I knew that was silly, because primary refractory patients went on to live long fulfilling lives after their stem cell and so what, I had to miss a couple of small things that in the grander scheme of things were not so life changing. And when ICE failed I instantly fell apart, but quickly regained my composure and canceled some appointments while making new ones to get the ball moving forward. I think I just needed to keep busy. Because if I gave myself time to really think about it, I just might have entered the pity party realm and I promised Steph I wouldn’t go and nor would I send out invitations to it. So I put on my brave face and showed up for Round 3.
In regard to treatments, Brentuximab was by far the easiest on the body. I got to go back to work which helped keep my mind preoccupied on things other than my primary refractory status. I stayed positive and felt really good about it. I think that may have been where I went wrong. I had always been a firm believer that one should never have expectations because than you are not blind sided by the disappointment that follows. I had expectations and was utterly crushed by the disappointment. I was devastated and drove right to the cemetery to tell the only person (Mike) that I thought could possibly understand how I felt. There were no words. Now don’t get me wrong I had my moments before this, where I shed tears over this experience. But this was different. My friend Hannah knew right where to find me and we just sobbed. She told me how in some ways it made her feel better to see me cry, to not be so strong in front of everyone all the time. In some ways it was cathartic but in other ways it felt like I stopped understanding the process. I wasn’t exactly sure how to comprehend what was coming, what it mean for my future, any of it.
Well, what it meant for my immediate future was Round 4 radiation which I hated the thought of from the beginning and have to say that it was with good reason. Physically I had the hardest time with it and I have to say I think emotionally too. The physical toll was expected the emotional toll took me by surprise. It was getting harder, it is getting harder to believe that a cure is still possible for me. And even if I can convince myself that is, I’m angry about all of it. I’m angry that I’ve never been happier in my life and it very well might be taken away from me just as quickly as it came on. And I worry about the people that I love and care about the most, I know the affect that all of this has on them too. Sometimes it becomes hard to process. I know I need to stay positive, but I also need to be realistic. I need to have faith, but I have to respect that I can’t bend the universe to my will. I really want to hear and believe that it will all be fine and work out the way that it’s meant to, but even if I can somehow choose to be selective the deafening possibility that it won’t, is still there.
The wait time is harder than I thought it would be. While having a break from appointments is great, it offers far too much down time. If I thought scanxiety was bad the month leading up this one is certainly much harder. And unless you’ve been there, I think it’s hard to make sense of. I hear how frustrated Steph is with me by my recent lack of positivity (Now please don’t think I sit around and cry, far from it. My social calendar is still booked and I love every minute of my life, I just find it harder to have the same energy I had in the beginning when it all seemed so much more doable.) and how Josh wants to find the right words to make it better but ends up listening and letting me cry it out like I need to. So as of late, I have a processing disorder. I’m not sure what approach to take aside from continue to enjoy and appreciate all that I have, especially the people in my life. I have to agree with the late ESPN anchor Stuart Scott, who seemed to have a pretty good handle on it: “You beat cancer by how you live, why you live, and the manner in which you live!” So no matter what, I will beat cancer because I choose to be happy, to love unconditionally, to laugh constantly, to really feel even if that means occasionally being an emotional train wreck, and most importantly to be thankful for my amazing life (even if that life includes cancer). So while I may not be able to process it, may be I don’t really need to. Maybe I just need to go with it. I said from the beginning you just have to be strong enough to keep showing up!