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.

I expected Friday would be a long day, after a series of long days this week in a supporting role, but it was easier than expected. I also learned a new word — pleura. It’s basically two layers of tissue that protect the lungs.

We’ve dealt with them before, although we never learned the word. When Jacob was born, he had excess air in the walls of his lungs. In the pleura, I gather. So they performed what is called a “pneumothorax” procedure where pneumothorax basically means a collapsed lung, and the procedure is to get rid of the collapse. In Jacob’s case, the excess air was restricting the lung from fully inflating, essentially, but the air had nowhere to go. It wasn’t IN the lungs, it was in the WALLS of the lungs. In the surrounding tissue. So, they stuck a pin in through the skin, into the tissue, into the walls of the lungs, without poking a hole in the lungs, and let the air out. It was something like 2 ccs of air in our 1h old son. I sat and watched, from 3 feet away, while they held him still, followed the ultrasound or X-ray (I don’t remember if they used the ultrasound), and stuck a giant spear in his chest. I’m sure it was a tiny needle, but it seemed like something that would create a sucking chest wound. I remember thinking, “Can I start at level 1 in this parenting game? Perhaps getting spit-up on me first, or maybe changing a dirty diaper?”. You know, before we get to the Boss Level at “L30 – Witnessing Life-Saving Surgery”…

Today’s experience was Andrea’s turn at the game. She decided that air was for babies, so instead, she chose fluid in her lungs. Pleural effusion. It sounds like a colour scheme for the bathroom. “Do you prefer Tropical Mist or Pleural Effusion?” Or some sort of food category…”I used to be SO into the sushi scene, it was amazing, and then I went through a Guatemalan / Ecuadorian phase, but now? I can’t get enough of Pleural Effusion. It’s liquid-based, and no carbs!”

Not so amazing for Andrea. She has had it since about November, causing her restricted breathing, and it got really bad in the last two weeks. The hope had been that the chemo treatment would start to reduce the lymph nodes, and as it improved, her body would reabsorb the liquid and it would fix itself, more or less. The alternatives are simple — drain it once or drain it repeatedly. I offered to go to Home Depot and get a nail gun and some tubing, which was looking like a viable alternative some days when the hospital didn’t seem to be offering anything better. But on Wednesday night, thanks to Jacob’s good luck charms, they gave her a timing (Friday) and some options (temp or permanent drain).

Today she opted for the temporary one, and while I’ll let her share the details on her experience, it was relatively fast. We went up to the hospital at 11:30, checked her in before noon, they saw her by 12:20 or so, and were done by 12:45 p.m. I opted not to watch this time, although they didn’t seem to offer that option anyway. An X-ray on the way out, no extended “care” needs other than changing a band-aid, and she can breathe again. She’ll see them again in 2w, at which time they’ll decide if they need to do another one or perhaps put in a permanent one, or even just wait to see if any breathing issues crop up. Easy peasy panda squeazy. I gather part of it was painful, not a fun experience, but she did it. And about 90m after we entered the hospital, we were heading back out, and she was HUNGRY today. Yesterday, not so much. Earlier today, not so much. Just her body saying “nope, not really into that whole eating thing”.

So P is for Pleura that are now considerably less full of liquid in her body. We also learned an interesting factoid. We were wondering, and therefore asked, why a pneumothorax to release air is done from the front (on Jacob) but the drainage today was from the side/back? Gravity basically — the air rises to the top of the lungs, and it was likely easier to get at for him from the front. On an adult, and with liquid that settles to the bottom, it’s easier to get at it from the side/back. Cool, huh?

Yeah, Andrea didn’t really think so either. But she’s home and she can breathe. In an ideal world, she would have had that experience on Monday. With one of the drugs she’s on, she couldn’t have actually done it on Monday, but it would have been nice if they knew that was at least the PLAN on Monday instead of playing “pass the piglets” for 2.5d to get to the actual plan. As a fan of Dilbert, and being a corporate planner plus anal-retentive squirrel planner, it seemed more like a plan to develop a plan for making an actual plan of what the options could be in the fullness of time.

But P is for empty Pleura. We’ll take it. At least until next week, when it will be T is for Two, as in Round Two of her chemo treatment.

As an outsider to the medical world, there are many things that annoy me about the system. I have no real views on triage, medical decisions, etc., I trust in the science and only have strong views when science wants to dictate QoL decisions or sidestep the philosophical issues. But the part where I do have frustrations is in the delivery design.

I’m not the only one who has noticed this, patient advocacy groups rant and rave all the time, and while I have empathy for their concerns, often times I see their complaints and think they’re looney tunes. Yet having experienced ERs for myself, Jacob and Andrea, I am often completely puzzled and frustrated by the complete lack of information that is shared.

I’ve blogged before that I once went to ER with chest pains that I hoped was mere indigestion, but with family history, prudence won out. I sat in the ER for five hours thinking I was having a heart attack before anyone looked at me, while a woman with a bleeding head wound sat near us in triage. Which left me feeling, “Well, if a bleeding HEAD wound doesn’t get looked at sooner, what hope do I have?”. And I’m there with CHEST PAIN. Isn’t that what I’m supposed to do? Well, of course it is. But when I arrived, they did their little heart monitor thing, checked me out, SAW NOTHING, and put me far down the triage list for priority. As they should have, because there was no sign of a heart attack. I don’t have any issues with all of that, it worked as it should.

Except they didn’t tell me. The nurse took the reading, and they don’t diagnose and tell me I’m okay, otherwise I’m likely to leave, something else happens, I die on the street and they get sued. But I’m sitting there for five hours WITH NO INFO about what’s going on, am I having a heart attack or not, etc. With some outside perspective, or some inside baseball knowledge as they say, I know that waiting in an ER is actually a good thing. They’ve triaged me — if they’re not whisking me into the back, I’m not that big a crisis. The longer I wait, the lower my priority was when I came in. Not reassuring, as they could have just forgot about me as far as I know, but still, they rarely lose track of someone, so more likely that I’m not “that serious”. Relax, right?

With Jacob, going to the ER was always a crapshoot. Like many ERs, you get triaged right away, then go to the waiting room, then move to the assessment unit and wait, and then into a room for someone, etc., before you are seen. There’s no info while you’re waiting. It’s just, “We’ll call you.” Which of course is almost the worst thing you can say to someone who’s stressed, other than “calm down” or “relax”. Yet there’s no real solution. There are advocacy groups who argue that you should get a ticket when you come in, like you do in a deli. “Now serving #33.” Except I know that triage doesn’t work that way, even if it doesn’t help me handle it much better.

I could go into an empty ER with four other people. I could be triaged against a 3-level priority system as “Medium”, along with one other person, and say 2 others are “high” and 1 is “low”. In theory, that means I’m “tied for third” in line, right? Except while I’m there, five more patients come in, same ratings. Now there are 4 that are HIGH, which bumps me down to tied for fifth. But even in MEDIUM, there are now four of us. I might not be the most critical of the four, or one of them needs something very specific that only one doctor on that night will handle, or they’ve put in a consult request and that person happens to show up before the other four HIGH are treated.

We’re all in little buckets, but the buckets are not all managed by the same people, and while they might empty bucket 1 first, there is no guarantee which fish from bucket 2 will come out first or when. We’re also sub-triaged within the group. They do tend to group like-patients together and if all four of us have identical issues, sure, the first one is likely to be served first. But if they gave out numbers, then people would get frustrated faster — “hey, why is #47 going in ahead of me just because he’s dying and needs care immediately and I just need stitches?”. Even telling people they are HIGH, MEDIUM or LOW is info none of them have, but it can work against you. “Oh, I’m LOW? I might as well leave.” Except it’s still LOW for an ER, it might be HIGH if you were to go to a clinic, who might just immediately send you to the ER anyway.

I say all this because Andrea is at the hospital this week, which is not supposed to be one of our weeks at the hospital. Of the four week cycle, with W1 being treatment, W2 is recovery from side effects, W3 is starting to feel okay, W4 is more likely to be closer to normal. Except in Andrea’s case, this being week 4, she’s been dealing with fluid in her lungs that has been present for several months. It got worse this month, not better as they hoped, and so after a long weekend of increasingly laboured breathing, she checked with patient care for her treatment on Monday and they said, “Yeah, come on up to Emerg.”. Which she did at about 10:30 Monday morning.

And waited. And waited. And waited. Sometime late in the afternoon, they did an X-ray to discover her fluid has increased in lung 1 (now more serious) and also partly in lung 2. Yay. That explains the breathing alright. Sooo, instead of waiting for the chemo to clear it up, they’d likely drain. So ER talked to hematology, and Pinocchio talked to Gepetto, and Kermit fell in love with Miss Piggy, and 36 HOURS later, they decided to give her a room. Yep, she spent 36h in the ER back area, one night without a real room but finally a bed at least, slept like crap, and then all day today waiting to hear SOMETHING. Apparently, the doctor who does the drainage only comes in Wednesday and Friday, from 5-6 p.m., and there’s no real coordination for them. They come in, drain a bunch of people, if they all get done in an hour, great. If not, see you Friday.

So she’s definitely in until tomorrow night, and if they don’t do it then, either she stays until likely Saturday or she’ll send me to Home Depot to get a nail gun and some tubing or a very long thin siphon.

Andrea and I have a standing joke, don’t even really remember how it started, where we say to each other, “Apparently, breathing is over-rated”. And apparently, that’s true now. Because if you’re not a priority when you’re a CANCER PATIENT in active treatment, what exactly constitutes a priority for a) a bed, b) a room (she got one tonight), and c) someone to drill a hole in your side?

After this week, we might need to revisit the treatment metaphor. The zen / “healing” motif might have dropped, and it is looking more like enduring a battle at this point. She’s a trooper, but if it was me? I’d be climbing the walls at the lack of information about what’s happening, who’s talking to who, and what the options even are that are being discussed / considered. The black hole is terrible for morale, even if there are no obvious solutions. Hopefully, she’ll sleep tonight. We were hoping to take Jacob up to see her tomorrow, but nobody 12 or under. I’m tempted to say he’s 13 but they might turn us away at screening and then we’d be messed up.