We met with Alex’s lymphoma specialist recently, and the doctor asked what was new. My husband, John, replied: “Nothing. Life is wonderfully boring.”
Alex is approaching a year in remission — a year of an unexpected remission after relapse. He’s been through seven different treatments since his diagnosis. Last March, he wound up in our local hospital with pneumonitis brought on by his immunotherapy. It turns out that immunotherapy also got him back into remission. Six months of steroids calmed the lung inflammation, and now here we sit, almost a year later. He’s had no cancer treatment, and he’s feeling great.
My adjustment as mom and caregiver has been in letting go, all over again. If you’ve read any of my previous posts, you may remember that Alex is an adult with autism. He had moved out of our family home and into a group home two years before his cancer diagnosis. They have been an amazing partner in all of this, but now it’s time for me to let them do their job and let Alex have his independence. We managed every aspect of Alex’s life for 22 years. We were all adjusting to his life away from us, and things had settled into a really nice routine when he got cancer. Then, as cancer does for everyone, it turned our world upside down. Once again, we were managing everything. He’s been doing well for months now, and I’m re-adjusting to letting go.
Alex has adjusted well to remission. He is happy and busy in his home with his housemates and caregivers. We see him frequently. He’s nonverbal, so he can’t call me or text me and let me know how things are going, but his caregivers are fantastic about giving me updates. What I struggle with is backing off and simply letting them do their jobs. I know they will call me if they have a concern — they watch him like a hawk. But it’s difficult for me to not be “in charge” of everything.
Not long ago I looked at my Facebook page and saw Alex smiling in a photo taken by his aunt. She and a family friend had taken him to dinner at his favorite restaurant. He hadn’t seen this particular family friend in a while, and he looked so happy. Last weekend, his caregiver texted photos as they were getting ready to go to “A Night to Shine” prom, an event for people with special needs.
Alex’s whole life had been managed by us. Due to his disability, he just couldn’t do things independently of us. He still requires around-the-clock care and supervision, but not being the one to orchestrate it all is a very strange feeling.
It all brings us back to life being “boring” and learning to let Alex have the independence we wanted for him — our main reason for having him move out of our home into this group home in the first place. We are busy with work and other things, and Alex is busy as well with things of his own. Right now, we are just enjoying living life.
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It can be quite an adjustment when you hear the doctor say "remission" or "cancer free." How did you go back to your life? How do you plan to get back to "boring"?
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Yes, Elaine - that seems a lifetime ago! I have so much to be grateful for.
Just so proud, amazed, thrilled, and filled with love for you guys. What a life! And more to come!this wonderful story continues......and to think that we first met on "compuserve" over the hair-cutting issue...when Alex was three?