One third of our last year was largely devoted to this medical adventure. Four months from surgery, the acute parts of the recovery are mostly completed and only minor (compared to where we’ve been) symptoms remain: a palm-sized area of the scalp still has strange sensations, the incision has three very small inflamed/scabby stretches, the shoulder and arm aren’t working properly all the time. In this phase of the recovery, it’s the chronic state that takes adjustment: stamina that is still not either predictable or very good, intermittent problems reading and concentrating, low resilience in the face of exertion or infections, and the like. All things considered, though, the recovery has been quite remarkable. We have many blessings to count. As always when stopping to look at the totality of the experience, the single most striking thing about it is how many truly wonderful people we know and how much support we’ve gotten as we ride the conveyor belt through this experience.
The main question in my mind, pondering it all, is still how we could have gotten the information we needed at various points. As in many new situations, we lost much of the information given to us—although I lost much more than Michael and Kearney did. There are chunks of time that due to medication, pain or trauma, I simply don’t remember. Any information provided to me in that time is lost, unless one of the team was there to receive it too. Even when we all received information, though, some of it was overload in the moment, or we didn’t have sufficient context to understand how important it would become. For example we’re all still working on absorbing what a one- to two-year full recovery window looks like and how the process is paced through that span.
When the surgeon said that the scalp would be the last thing to heal, we had no clue what that information meant or how large that would come to loom in our lives. After all, wasn’t the tumor the thing? Or the risks of surgery? Or… the list is long of more immediate items that consumed our attention and pushed consideration of the meaning of the scalp information off the table.
Earlier, we ruminated about whether a series of brochures (or the on-line equivalent), by stages in the process, might not be a helpful way to dole out information. Maybe each experience is idiosyncratic enough that’s not feasible. On the other hand, that’s a project still on our to-do list to think about and consider.
This has been a remarkable experience. The support and caring we have received from all of you throughout has made it possible for us to get to this point with our dignity and optimism intact and with a sense of purpose. When we were low, you were there to buck us up. When we were happy, you celebrated with us. When we had existential questions, you debated them with us. When we couldn’t quite manage, you filled the breach. We feel connected and supported and have a strong sense of community and belonging. Thank you, all.