When Jack was diagnosed with Leukemia three and a half years ago, I focused on the “End of Treatment.” I thought we would do what we could to get through the difficult treatment process, but that eventually we would be done.
Well, to be perfectly honest, I thought we would be done when the Induction phase (where remission is achieved) was complete – 30 days after diagnosis and the beginning of treatment. Then I readjusted my thinking – we would have most of the hard stuff behind us after Consolidation – the chemo-heavy “blast the hell out of any remaining cancer cells” phase. I figured Maintenance would be unpleasant, but easier that those prior phases – I thought we would pretty much be done once we got to Maintenance. But then Maintenance lasted over two years and while much of it went smoothly, we did not feel done at all – instead, the hardship of all we’d had to endure up to that point caught up to us.
THEN I thought – End of Treatment is the ticket! End of Treatment would come and this business would be behind us! But, well…
I’ve lost count of the number of therapy sessions Jack has had at this point. With this latest therapist, we’re at least past 10 sessions by now. This therapist has been the most helpful, and Jack has had two successful blood draws! By “successful,” I in NO WAY mean easy. There was shaking and tears, and both times I thought we would not get the draw. But Jack managed to push past his fear and do it!
The first time he was successful (after 8 therapy sessions and countless “needle exposures” at home), he felt jubilant and accomplished afterward! He even said it hurt much less than he thought it would. But the second time was harder for some reason, and afterward he felt tired and defeated and weepy. It didn’t help that one of the phlebotomists in the lab muttered, “He’s never going to be ready,” which Jack heard.
Two steps forward, one step back. Can I bill the lab for the therapy appointments, ya think?
As the therapist delves deeper with Jack into the medical trauma he has experienced, the emotions (mostly negative) get harder to deal with and manifest that difficulty comes out in various ways. Fear randomly comes and goes, insomnia often plagues him, and Jack has felt more of a need to cling to his parents. Some OCD tendencies showed up during the second blood draw, something we hadn’t seen in him before, and then again in his therapy session the next day. Depression – a despair that no 8-year-old should even be able to contemplate – came over him at bedtime on Sunday.
Having gone through trauma therapy myself, I know how hard it is and that when you are in it, it feels like nothing will ever be okay. There are many forces within our minds that try to protect us from feeling the pain of trauma – they tell us to run from even distant memories of it. It’s exhausting to fight your own brain. It takes a fierce, stubborn person to do it, and lots of support.
I have no doubt Jack can do it. We will support him every step of the way.
But he has many doubts and fears. After the therapy appointment Saturday, which had him so upset that he started to run around the room near the end and stopped being cooperative, I tried to reassure him that it’s all worth it.
“It doesn’t feel worth it! It feels terrible!”
I know, buddy. It really, really sucks.
The blood test results – what much of this effort and urgency is about – look pretty good. Jack’s immune system is recovering, which is very reassuring. But for some reason, his iron is super low and that leads to other worries, more medications (thankfully, just a liquid iron supplement at the moment), and additional tests.
We don’t want more worries, more medications, or more tests. Our cups not only runneth over from these things – they’re being crushed by the weight of them. We don’t want anymore, thank you!
We have no other choice, though, so it’s one foot in front of the other. I’m coming to terms with the fact that I have to stop thinking in terms of when cancer will be behind us. When you’re in it, you can’t see through to the other side.
You just have to keep going anyway.