Thursday, April 20, 2017

Watching Alex

It's taken awhile, but the unexpected news of Alex's remission is finally sinking in. Right after we got the news, I wrote about how the good news was actually difficult to accept in Cease Fire. Tomorrow it will be a month since the PET scan and I can't believe how long ago it seems.

The odd thing is that it all seems so distant, yet only six weeks ago he was in the hospital and we were fearing the worst. We were steeling ourselves for the next battle and so fearful that our options were gone.

Now, here we sit, with no idea how long this reprieve will last, but learning to enjoy it.

The most amazing part of all of this is Alex. Through all of it, we didn't know for sure what he understood, but felt strongly that he knew he was sick.  When he relapsed in October, then developed the awful rash to the clinical trial drug, his anxiety was at an all time high. We had assumed the steroids he had to take to treat the rash exacerbated the anxiety.

When he developed pneumonitis, he went back on steroids. This time, the dose was even higher and he's been on them longer. He's got about a week more to go and the dose is quite low at this point. The doctor has been gradually tapering him off. We're hoping that minimizes the rebound anxiety when he's done.

The weird thing is, there hasn't been any anxiety so far. That may not mean we're home free once he stops the prednisone completely - last time he had a sharp increase in anxiety for about four weeks after he finished the prednisone - but he is already acting drastically different than last time.

Once again I find myself desperately wishing he could tell me what he's thinking and feeling.

When the doctor told us the cancer was back and the treatment options weren't curative, Alex's anxiety increased dramatically. Then after the failed treatment, awful rash, and prednisone, it reached an all time high. (I also have to wonder how miserable the rash was given Alex's hypersensitive sensory system.)

Once we got the news that he was in remission, it was almost as if a switch was turned. I know that he's very sensitive to our moods and can reflect them back to us, and we were certainly upset and anxious when he relapsed, but this time he adjusted to the good news more quickly than the rest of us. The relief was apparent and immediate.

I know that he appreciates the reprieve from treatments and doctor visits. We've been seeing his local oncologist to monitor the prednisone taper and to monitor his lungs, and he is clearly not happy to be back at the cancer center. The appointments have been fairly short, which definitely helps.

He's feeling better than he has in a very long time - probably since before cancer. He has more energy and is napping less. His caregivers and the people at his part-time job all report what a great mood he's in. We're all watching him and marveling at how well he's doing - not just physically, but mentally and emotionally. Although I wish he could verbalize what he's feeling, I'd have to really not be paying attention to what he is saying through his attitude and actions.

When he was in remission last year, he was still recovering from his transplant so he was still not himself. He had a positive attitude, but not a lot of energy. He had issues with anxiety as well, more than he'd had since adolescence.

This time, it's completely different. It's like we're seeing the Alex we knew before cancer.

I'm not sure what the future holds, but all I need to do is take my cues from Alex. He is showing me how to live in the moment and appreciate this time right now and reminding me to be present and grateful. 

He's been teaching me lessons his whole life, why should now be any different?