Today marks a bit of a milestone, although perhaps only to me, oddly enough. My wife started her official chemo 4 weeks ago, and she’ll go through six cycles. While the routine is “meet with the doctor on Tuesday, have dose 1 of chemo on Wednesday, and have dose 2 on Thursday”, that first meeting isn’t really part of the “round”. It’s leading up to the round. So Wednesday is the first day of the cycle by most people’s calculation, including my wife’s. Which makes today, Tuesday, the end of the previous round.
I wondered if my wife would embrace the day somehow, feel like it was a “closure” of round 1. That the allergic reactions, some nausea, aches, pains, headaches, and fluid in her lungs were all part of Round 1’s symptoms and that she had survived to come out the other side. I wondered if she might want to “mark” the occasion somehow, perhaps I was wondering because I felt like if I was her, I might want to mark it. Even as her support and advocate, I want to help her to celebrate any milestone that she can. Walking around the block again after not being able to breathe well enough two weeks ago. Going in and out of the hospital on her own, not needing me to push her in a wheelchair, or fearing collapse. Finishing Round 1 and starting Round 2. Nope, she didn’t seem to be feeling it, and with the two days ahead of her to gear up for, that’s probably not surprising. Her results from R1 are encouraging, things are doing what they’re supposed to in her bloodwork, but as I’ve noted before, that’s her story, not mine.
This round is going to be, I think, a bit harder on me as her support. For R1, I was allowed to go into the room with her, sit there while it went drip, drip, drip, talk to her, distract her, notice the rash on her neck to signal a reaction had started. For R2, they don’t want to risk any infection of others, although there were obvious partners there last time for lots of people who weren’t first-timers, so I don’t know why I can’t go this time. So she has to do the two treatments by herself. I can’t say that I’m a fan of that, feeling a bit like Hoke in Driving Miss Daisy.
On the positive side, as her potential advocate, we got a bit more info and perspective about her time in the hospital where it seemed like nothing was happening. In today’s meeting that I did by phone while Andrea was there in person, I asked her main doctor, and I said it was my Q as her advocate, was there something that should have been done last week that wasn’t — by me, by her, by him, by the ER staff, by respirology, etc. It seemed, to us at least, like she was in the ER but nobody was in charge of her care. So she sat there for three days waiting for someone to present options to her. Which they did, on Wednesday, and she had a procedure to drain fluids on Friday. Spectacularly so for volume. But while that Monday-Wednesday period may not have been ideal, the alternative to just go through her main doctor as the lead would have been way worse. If she had just had him treat her in clinic, he would have ordered the chest x-ray and then respirology would have looked at her somewhere around three weeks later; because she was in ER, she got seen in three days. And she was monitored while she was there in case it became more urgent.
Coming out the other side of that, there’s a game plan in place if the same issue crops up again i.e. she’s being seen in two weeks for ongoing monitoring and followup, as she still has fluid on the x-rays taken after the procedure. Which is great, not the fluid but the game plan, but my real question was if something NEW comes up, and we’re back in the ER, is there something more we should be doing?
Mostly not. While the doctor in the ER could have been more forthcoming in explaining what was or was not happening, the outcome would have been likely the same…even if she had been seen on Monday, the procedure would have had to wait for Friday for a drug to clear her system and for them to find room in the schedule. But three days is better than three weeks, so ER and urgent care was the best option we had at the time. And likely the best option for a potential future “different but similar” issue.
I think for me, I’m starting to see my supporting journey a bit more clearly in the three phases. Phase I is to help her get through the treatments. In that regard, she’s completed step 1 of 6, 28 days down, 140 days or so to go (the last one won’t exactly end at 28d, but well, let’s go with it). I don’t know all the bumps coming in the road for Rounds 2-6, but I have a bit more info after R1.
Phase II is likely to be the six months afterwards as her body recovers somewhat from the ordeal, as she gets some of her immune system working again without being attacked by chemo treatments. We’re thinking ahead to a potential trip, something big and commemorative perhaps for the three of us. We have some cash set aside from pandemic savings, so perhaps that’s not a bad way to use some of it. But I feel most of the phase will be slower re-emergence and just helping her on days when that re-emergence is more overwhelming to her than she might be ready for, than she used to be able to handle.
And then Phase III will be that post-treatment and recovery period, the dreaded “wait and see” era. With the type of cancer she has, we were initially told that it could go into remission relatively easily for up to ten years. That sounded very hopeful, but it is not necessarily the reality. Relapses can be as fast as 3 years for some, probably 5 on average. So she as an individual and we as a couple might have some other decisions to make in there about careers, retirement timelines, sequencing, etc.
For the part of the journey that is mine, I am struggling a bit to juggle everything. Not in the sense of I need someone to come in and help, although that has been appreciated too with people dropping off meals, or Andrea’s sister looking after Jacob for the R1 treatment period. If I divide my life into four areas, the three that are support for Andrea, managing life with Jacob, and carving out some “me” time, are all going okay. I’m tired, sure, but it’s mostly functioning at something resembling a sustainable level for the foreseeable future.
For actual career stuff and work, I am not keeping that ball in the air as much as I would normally like to do. I don’t mean with the individual files, I have a handle on what we should be and are doing, the work itself is fine. What I have a hard time doing is caring. I don’t mean “at all”, I care about my work and files, sure, but more that I am incredibly distracted. Late this afternoon, I updated my leave requests for the last week, which was a bit of a crapfest. Two hours off here, three hours off there, another two here or there. Nothing major, just distractions in the day.
For Wednesday and Thursday of this week, I have no real role during the day other than as Hoke, the chauffeur to take Miss Daisy to her appointments and bring her home again, and to take care of her once she is actually home. So I don’t NEED to be off work during her treatment, I might as well clock in, but I won’t be surprised if I’m too distracted to do anything and I’ll just clock out again. My bosses and coworkers are great, they know what’s going on, and I’ll cover what I need to cover or someone will cover for me, if need be. But it feels different from even when Jacob was born and we were dealing with all the early health issues for him. Once I was AT work, it was like a separate world for 8 hours. When I emerged again, it was chaos, but there was calm in the world of work. Some others have described it as work being a refuge from the storm of your personal life at those kinds of times, and while the metaphor doesn’t totally work for me, it’s not a terrible one. That isn’t happening now. I feel no sense of distance, maybe it’s the WFH thing that’s different, or more that when it was Jacob, Andrea had him covered during the day, while now it’s her, there’s no spouse other than me to take care of her. It’s not quite right in its description, I don’t feel alone or anything, it’s just with Jacob we had two primary caregivers, now we have just one. Our bench strength is down a peg, so to speak.
So while things are generally going okay at work, if I’m brutally honest with myself, I wish I wasn’t acting director right now. The timing is just wrong. It’s a job I’m ideally suited for, I love it, I would like to keep it long term, but all things being equal, I’d rather just be plain old manager again, and not have the extra concerns to worry about every day. I also feel something odd, and this is a bit insidious and thus I have to stop it from going too far in my squirreldom, but I feel like I’m not really making the most of the experience.
There are a couple of files I would love to dig into, just to manage the heck out of, fix it the way I think it should be done, and then get the hell out of Dodge City. A chance to leave a lasting imprint on a few files where I would like to lock in the “PolyWogg approach to planning”, so to speak. Instead, I’ll settle for keeping the lights on and the trains running right now.
A missed opportunity, from a career standpoint, perhaps, but I have no regrets about it, I know what the right decision and approach is, and I’m doing it. Still, though, it is not what I thought my first sustained acting would look like, particularly if I was hoping to make it permanent. That seems highly unlikely at the moment with the timing we’ve got, and honestly, I don’t really care. Just not on my priority list, even though it’s the best shot I’ll likely ever have at it.
Somewhat related to that, I’m also in a period of mild uncertainty. My official acting ends May 17th or so, with the plan being to extend me to July 17th (4m to 6m). After that, I have no specific plan other than to return to my previous position. Which is a good job, and I’ll be fine with that, or something else. Although I have been thinking of something else, tied into the above considerations of Phase II and the end of Andrea’s treatment, perhaps I might want to take a few months off between gigs instead. A potential bit of recovery time for me too before commencing the likely final leg of my career.
The funny thing is that I am not that excited by the potential leave or Phase II or Phase III. Those are markers too far in the distance. I’m more jazzed by the calendar and that we can soon open up our deck and gazebo and be able to sit outside again. Even if, as Andrea joked today, we might have to wear our snowsuits while we do.
Come on warmer Spring weather! Where are my red-winged blackbirds, my harbingers of a long quiet summer? I’m looking forward to those too. They should show up just about mid-way through Round 3.