In case any of the people in my life are wondering: yes, I know I'm a control freak. I strive to be organized, in charge, and on top of things. I like to be right. I'm not good at admitting weakness, or comfortable with being wrong (even when I'm able to admit it, it's painful for me). Cancer flies in the face of every aspect of how I try to live my life.
My dad died of cancer, so it's not like my life has been untouched by this awful disease. He was 68 years old when he was diagnosed with advanced, terminal, esophageal cancer. They did surgery to remove as much as they could, but the surgeon told us when he came out of the operating room that dad would not survive this disease. He passed away less than a year later. It was a heart wrenching year for my whole family. Dad had lived with Parkinson's Disease for a dozen years, and he actually expressed relief at the cancer diagnosis saying he would rather die of cancer than spend 20 more years with Parkinson's. I saw my dad nearly every single day of his last year, and I was at his bedside with my mom and my husband when my dad passed away. I did not see him the day before he died. He called me to tell me not to come over; to stay home and rest, because Jessica and Alex (age 4 and 6) both had pneumonia and I had been trying to take care of them, work, and see my father daily. He told me he loved me. That was the last conversation we ever had. He was not conscious when we were called to his bedside the following morning.
My childhood was mostly good. I was raised by loving, imperfect parents and the youngest of five siblings. They were enough older than me, that by the time I was a freshman in high school I became more of an only child. I'll spare you the trials and tribulations of our big, messy, headstrong family. We had our ups and downs, as families do. What I will say is that I felt that my life was not within my control for a lot of my childhood and adolescence. I also felt that I it was my job to be a "good girl," to take care of people, and to make things better.
One of my primary goals as an adult has always been to be in control, to be proactive, and to make things better. I'm finally, at age 52, catching on that I've been deluding myself for decades. Life is just messy, and tumultuous, and difficult, and beautiful.
I used to think that Alex's autism was the most painful thing I had experienced in my life. I'm ashamed to say that now. His autism has brought him tremendous challenge and, at time, pain; and that has been true for our family. But I could not love him any more, nor could I be more proud of him, if he didn't have autism. Autism doesn't define him, or our family, but it is an integral part of him. Just like his smile, his sense of humour, and his blue eyes. Alex's autism, and certainly his life, is not a tragedy. Now that I'm faced with the very real possibility of losing him, I want desperately to hang on to every messy piece.
Today we go to see a cancer specialist to find out what's next. The cancer isn't gone. More treatment is undoubtedly needed. Writing this without knowing what's next is, in itself, a risk for me. Will I be embarrassed that I shared my feelings if the news is better than I expect? Who am I kidding, the news can't possibly be good! All of that is rolling around in my head. So, I'm taking a risk. I am, literally, throwing up my feelings on the page this morning. And then I'll dry my eyes, take a deep breath, and think, "show time." I'll put on a brave face, go pick up my son, and John and I will drive to the hospital, meet with the doctor, and then we'll do what needs to be done.
I may have to accept that I am not in control of this situation. That doesn't mean I'm giving up the fight. As John said to me this morning, "We'll do what needs to be done. We always do."