Monday, June 27, 2016

Anxiety, Autism, and Cancer - Oh, My!

"Lions and tigers, and bears, oh my!"

So goes Dorothy's refrain in the Wizard of Oz as they are walking through the enchanted wood.

Then they meet the Cowardly Lion.

In the end, The Wizard gives the Cowardly Lion a medal which is meant to represent Courage and we as readers assume that all his problems will disappear. In real life, it isn't that easy.

I've heard it said that courage is not the absence of fear, but acting in spite of it.

Alex has plenty of courage and uses it daily in a life that challenges him at every turn.

Anxiety has always been a big obstacle for Alex. Combine that with sensory processing and communication issues and there are many things that most people take for granted that require a lot of effort on Alex's part.

Getting a haircut?  It took about six years of very thoughtful and intentional supports to get to a place where Alex could get a haircut without having a full blown panic attack. (See "Haircut" - Haircuts)

Going to the dentist and getting your teeth cleaned? That also took many years of intentional effort and supports.

Alex has always struggled with leisure skills. It took many years of careful teaching and planning to learn to go to the movies, go out to eat, visit zoos museums, and travel.

As he's gotten older, some things have gotten easier, and other things that he loved when he was younger have gotten more difficult. My theory is that as he's gotten more engaged in the world and people around him, some things have gotten more overwhelming. Things that once seemed mastered we're at a point of relearning.

Alex has shown tremendous courage throughout his illness and cancer treatments. Often, with that trademark smile on his face.

Alex - Day +6 post auto stem cell transplant.
January 6, 2016

Alex - Six Months post auto stem cell transplant.
June 27, 2016

There's Alex's serious face, though. The one he wears when he's calling up all the courage he needs to do what needs to be done. That might be cancer treatment, but it might also be getting a haircut or going to a movie. Lately, the anxiety has crept back into Alex's daily life more and more. It varies quite a bit from day to day and can be very unpredictable. It turns out that anxiety is not uncommon for cancer patients, and it also isn't uncommon for it to continue after things appear to be getting better. The fear of relapse can be overwhelming. The after effects of chemotherapy and treatments have a lasting effect on fatigue and anxiety.

I know it's frustrating for Alex, and it's frustrating for his dad and me as we try to support him. It feels like we've lost so much ground in what he'd been able to do. He has to relearn how to go places and do things he had gotten so good at. And we never know which days will be good ones and which will be difficult ones.

His birthday was one example. He recently turned 26. We had a low-key party at his sister's house. John's sister's family was there, and our family. It was a fairly small group, and all people he's very close to and comfortable with. We had one of his favorite meals (pizza) and watched a movie. He was anxious and overwhelmed. It wasn't the party I imagined, and I don't know how much fun he had.

This weekend is another example. I planned a short family trip. John, Alex, Tucker (our dog). and I went to Door County for three days. The resort we stayed at had small, pet-friendly cottages so we had our own space. We were going to keep things low-key, go for walks and drives (Alex likes to go for drives) and watch movies. Alex was anxious on the drive, and anxious when we arrived. We got out a little bit, but not much. We got take-out food because I knew going to a restaurant would be too overwhelming.

I'll spare you the blow-by-blow, but it was simply too much for Alex. We arrived in the afternoon on a Friday, and by Saturday morning he was ready to go home. We got some take out food for lunch, took a leisurely (well, leisurely for us) drive to see the sights and went back to the resort. He tried to take a nap, but got up and starting asking to go home.

This wasn't something he had to do (like cancer treatment) so we felt he should have say in what happened. From a capacity-building perspective, we were successful. He stayed away from home at someplace new (although he's been do Door County lots of times, this resort was new to us) and did a few things. We ended up deciding to cut the trip short and came home Saturday evening.

Today, at home, in familiar surroundings his anxiety has lessened greatly. The smile is back.

It was the right decision to come home. I think it was still the right decision to go, because it helped to build capacity, even though it didn't turn out like I hoped it would. But, in the end, it was the right decision to come home early.

The three days of relaxing and fun I imagined ended up to be 30 anxious hours. We planned a respite from cancer, which it was, but it did not end up to be a respite from anxiety and autism. I'm sad that it was so difficult for Alex, but I'm proud of him for how he handled things. He handled his anxiety well, and he was able to make his wishes known and have some control over his life.

Hopefully, we rebuilt some capacity and maybe the next time we try it will go better.

In the meantime, he's got a couple more days to hang out with us at home before he goes back to his house, so we still have some family time with no cancer treatments. Our main goal was to get to spend some time together, and that can happen anywhere that Alex wants to be.