Tonight I am writing from my father’s office at our building as I needed a little reality time out and this has become my hiding place since Adler’s diagnosis. It’s a safe place of sorts to come to when it gets too heavy. I can come here to think, or not think, write or just sit in the cigar room and listen to music and try to relax. I say try because it isn’t easy for me to do. My phone is next to me at all times just in case and my mind is on alert always. I wish it wasn’t that way. I wish I wasn’t that way but, it is and I am, so here we are. Here we are right before his MRI. He has his MRI this Tuesday in the afternoon. A later one that what we’re used to but now that he does them awake, with out anesthesia, he can do it at 2:30pm and have lunch before! Kinda cool actually. Then we will see both of his doctor’s for results the next day in the afternoon as well. We had been receiving results the day off the MRI the last two times but this time the wait is until the next day. That wait is an eternity. To find out if the tumors have grown. They are inoperable so they will remain in him. Cancer lives within Adler everyday. It’s stable but still there lurking with reminders like headaches and vomiting. The pain shows up every now and then too and scares the shit out of me. I can’t help but immediately go back to where it all began with the agony of that pain that would drop him to his knees and have him begging me to help him. I can’t help but prepare myself for the words “we see some growth” or “there’s been and increase in size”….. however they would word it, I have to acknowledge that it could happen. I have to allow myself to feel that truth and fear because if I don’t, I am kidding myself to think it can’t happen. I am confident that he is still stable and I hope and pray that’s what they will tell us Wednesday but just because I can’t be blindsided or gut punched again, I remind myself that the news could be bad. It’s happened to so many children lately and I do have that survivors guilt of why not Adler? Why did he respond so well to treatment? How has he made it two years now with out more treatment? And when will it happen again? It’s all so crazy in my mind during this time. It is during most times, but the week before the MRI, I am a contained, controlled, certified mess. I say contained and controlled because it’s like setting off a bomb in desolate area, no one can get hurt, but the damage is still there, that’s my mind. It’s damaged but it’s contained and the poison that is my anxiety can’t contaminate anything or anyone else, just me. At least I try very hard not to let it leak out. Sometimes it does and I have to reel it in and remember that the only enemy is the cancer that lives in Adler, not the reality that has become our lives. I get very angry sometimes at it all. At cancer, at our life at the how this is fucking normal now and I have to cry and let it all out. Again, I try to keep it to an organized amount and in the privacy of my shower or bathtub or in the corner of my room on the edge of the bed with a box of Kleenex ready and my relax oils and inhaler at my side. Those that suffer with severe anxiety know the tricks they need to will their minds back to reality even if that’s what put us in the state we find ourselves in with those deep breaths and calming music, or the Metallica blaring and the boxing gloves on. We all deal with it in different ways. But today, I kind of hate that I have to deal with it at all. And I have to pack us up for the trip to Chicago for the MRI and results and it terrifies me. But at the same time I will feel such a rush of relief when they tell us the good (or bad) news that it’s like a drug I’m used to but haven’t taken a hit of in awhile. See, we go every 6 months now, not every 3 like we were. So there’s more time in between to get settled back into our routine of “normal”.
And during this last 6 months my father had open heart surgery……twice. Both life saving and terrifying for all of us. And they say “boy you guys just can’t catch a break” that’s an understatement! I actually felt comfortable at the hospital with my father. I’m used to it. My family members aren’t as accustomed to the hospital life like the three of us were. 15 months of weekly treatment and quarterly MRI’s and tons of ER trips made it common and oddly comfortable for us to be there. Adler even says he misses the hospital. I do too. It was our second home and the people there were like extended family so why wouldn’t we miss it? The reason to be there was what sucked, otherwise, it was a pleasant experience.
So, I sit here in my father’s office typing on his computer in our family building bouncing my leg remembering so many things, feeling so many feelings and wishing I could just shut them off. Or at least filter out the bad and keep the good. I know that’s unfortunately not how it works but man, I wish it did. So instead I try to focus on the good times and remember that no matter how hard and how low it got, we made it. He made it. And if we have to do it again, we will. We will rally and scream our barbaric battle cries on the grounds of war again if we must. And will be armed with love and faith and the promise of a new day with hope and his lust for life to keep us all fueled for the fight. We are and he is Bold As Love. And most importantly FUCK CANCER!!!!
One thought on “The weight, the wait……”
Dear Elizabeth, there is nothing I can do to offer any help to you. I wish, really wish, that wasn’t so. I have no magic. If I could take even one hour of the anxiety and pain from you, I would do it in a heartbeat.