The Followup

Cancer free are those magical words we want to hear, and yet all those appointments afterwards are a challenge.

Last week? Akiva had an ultrasound to do, part of his testicular cancer followup. He was diagnosed last February - yes, it was a shock - and made it through surgery and recovery, and the grueling chemo protocol that followed, recovering nicely afterwards. His CT scan post treatment pronounced him miraculously cancer free. As we breathed a huge sigh of relief, and Akiva totally heard the important part, “no more chemo,” we wondered how follow up would be for him (and for us).

Complicated. For the same reasons treatment was hard. The hospital, as we all know, is a strange and smelly place. You’re asked to comply and not complain, “lie down here,” “hold your arms up here,” “undress partially or more,” “hold your hand still while I stick you with this needle,” and so much more.

And what does almost every kind-meaning nurse/doctor/test giver say? “Oh this won’t hurt,” or “this will just take a second.” Why do they even say that? That it won’t hurt is almost never true, even if it’s a brief pain, and what seems like a brief second to the professional is a lifetime to the person enduring the test, the stick, the ultrasound, or more.

Akiva (and me) before all of this

Do we even understand another person’s pain or discomfort level? Can we really, especially if they make lack the language or ease to express their stress and fear. Strangely, it makes me think of many of us relate to and diagnose people with suspected developmental delays. In my mind, most imperfectly, given that we, those that diagnose and assign labels like high and low functioning and more, don’t have those disabilities and can’t really understand cognitive difference, except as a clinical definitions based on information learned and ideas assumed.

Now, I don’t know about you but I hate the dentist, even for a cleaning. I feel uptight as the hygienist yaps about her kids and scrapes away at my teeth while I try to breathe calmly and unclench my hands. It does hurt - I have a million cavities from childhood - and my back teeth are sensitive. I know that the cleaning won’t take long but those 20 minutes feel like a million years.

Today, Akiva had an ultrasound. When he walked into the room he immediately lost all powers of language, but let us know vocally that he felt nervous and uptight. The technician was lovely and friendly but definitely needed Akiva to comply and told him so in an easy way. Ultimately, he got onto the table and laid back which he hates (he feels unsteady on his back), and exposed the necessary body part, but we ended up having to hold his hands and legs until, as the test began, he realized that it wouldn’t hurt and he could relax just a bit. Afterwards? He felt upset and shaky and just wanted to “go home to Akiva’s house and have lunch.” Which we did.

Akiva at Hadassah, May 2023

It’s not like he’s forgotten all that went down from February through late May. While he’s show tremendous resilience, he’s really still recovering emotionally, at his own pace. And so much of the follow up is back at Hadassah, and we’re so familiar with making our way to our old haunts - which is helpful (it’s a crazy maze) but I’d rather forget the short cut to oncology.

As for us? Like Akiva, we don’t love the long list of appointments and the pit that builds in our collective parental gut when we have to help (or gently force) Akiva through any of it. There’s bloodwork next week and again in 2 months, then the visit to the new oncologist in September, and another CT again, in October. We’re so relieved and hopeful for Akiva’s health - testicular cancer has a thankfully low recurrence rate - and we hope he’ll adjust to the followup schedule.

It’s a work in progress.