The holidays are upon us, the days are getting shorter and flying by even faster. December 5, 2013 is peaking around the corner and the scanxiety is waving hello. Jake will have his first post chemo scan that day. Because of his age and size he will only be getting a chest and leg x-ray. These are the two places that a recurrence will most likely show up. His oncologist feels that the exposure to radiation from a CT scan will do more harm than good. MRI's are now useless for detecting disease in his leg because of all the hardware he has. If there were to be an area of concern in the X-rays he would get further scans.
Last week Jake complained of pain in his left foot and actually refused to wear a shoe for two days. Randy and I looked at each other with fear behind our eyes the whole time. This brings me to the topic of this post - late effects. I am not talking about the potential health related late effects that Jake could experience from his treatment. I'm talking about how cancer has affected me. So, every time Jake complains of pain the worst crosses my mind. Ethan complains of a headache and I think of brain tumors. I don't actually think he could have a brain tumor, it's just that now that we know that the worst can happen it always pops up as a potential possibility. I call it cancer-causing-irrational-thoughts. They come and go and I can dismiss them pretty easily, but the word "cancer" rears its ugly head all too often...dammit cancer, get out of my brain!
I read recently that a good percentage of parents have some form of post traumatic stress disorder after caring for a child with cancer. Oh my gosh, ding! Hit the nail on the head. I am ridiculously emotional in spurts, have trouble concentrating, and have guilt. I can be irritable and feel hopeless. I often relive the past year while daydreaming. The thought that my child had cancer still brings tears to my eyes and disbelief to my heart. I realize that I didn't confront my emotions throughout Jake's treatment as much as I should have. I didn't cry, mope, or complain. I had a job to do and that was to get him through chemo, surgery, and recovery. I didn't have time to worry about my feelings. I did occasionally cry in the shower or if I was alone in the car but I didn't think it was important to do so. I thought it was more important to remain focused and composed. I think differently now and if you are a family member reading this who's child is in chemo, please learn from me and take the time to let your emotions out. I don't regret anything that I've done throughout our journey, I just wonder if I would feel differently now if I had cared for myself emotionally. Don't worry, I'll be ok, and I don't feel this way all the time. I just thought it might be helpful to someone else to know that even though treatment is over it's ok to feel sad because of what you've been through.
The ability to plan and see into the future is something I never thought would be difficult. But, after spending almost a year of not being able to plan anything more than a doctor's appointment, we find ourselves having trouble with it. For me it is just an annoyance. Things sneak up on me and the days blur together. It's probably not that much different from our busy life with three kids from before, it just feels foggier. For Randy it has been a bit harder since he is required to plan ahead for school and work. I think this will just take time to retrain ourselves.
It's hard to tell if Aubrey has been affected since she was only eight months old at Jake's diagnosis. I tend to think not because she is the happiest toddler you will ever meet. Some of the guilt I feel has to do with Ethan and how I didn't realize how much the last year was effecting him. Ever since Jake finished treatment, Ethan has been happier. He and Jake play, wrestle, sit side by side, share food, and reek havoc in general. I didn't realize that not being able to play with Jake caused Ethan so much unhappiness. There is nothing I could have done differently and I don't think any amount of talking about it would have changed how he felt. I am just happy to say that Ethan is doing wonderfully and is back to being himself. He still has bad dreams occasionally, always about me abandoning him somewhere. I know this is because I was gone with Jake so often. The reality of that hurts, but someday he will understand why it had to be. Until then he gets extra love and hugs.
So, there are all of the skeletons out of my closet. Every member of our family and many friends were or still are affected by Jake having cancer. It has changed us and opened our eyes and we have all felt the pain that follows knowing. Trust me and don't worry, I'm going to be fine because I have so much to be happy about and thankful for.
Our little hero continues to amaze and inspire everyone he meets, while never knowing his impact. Jake never complains, always does his best, insists on independence, and shows the goodness in his heart through his smile. I always say that he'll be blending in and running with the rest of them soon, but I know that he'll never truly blend in because he is a real life Superman.
