Cancer, secrets, and privacy
Originally, I was thinking of titling this post, “My wife has cancer. So there’s that.”. But that seemed a little stark, harsh even. Aggressive. I need to step back from that point for a moment.
I frequently say to people, when we’re talking about mental health and stuff, about how I’m doing with COVID-related isolation protocols and things that “we’re a high-risk household” and/or “I tend to carry a fair amount of stress.” But I can’t share much more than that usually as it is not entirely my story to tell.
Let’s start with me though. For me, the issue has often been that I am obese and with my weight gain, I’ve hovered on the edge of pre-diabetes and diabetes numbers for my A1C level. And, because I don’t want to admit to myself the seriousness of some of it, I avoid saying, “I’m diabetic”. Instead, I say things like “My A1C numbers are high.” Or “I’m in the pre-diabetic stage”. Never “diabetic”. Until my last set of blood results jumped significantly. So I can clearly say “I’m diabetic” or that “I have diabetes”, but I’m still more tempted to use weasel words around it. My leg issues of a year ago are related, but not completely causally linked. There’s other stuff going on too. But it’s enough to raise my stress at times. And diabetes does raise our health-risk levels in the household, particularly when I was struggling with infection issues, etc.
For Jacob, he has “spastic diplegia of unknown origin that presents as mild Cerebral Palsy”. That’s a LOT of formal wording to say he has mild CP, but they can’t find the cause from MRIs or genetics. But while I talk about some stuff related to him, and what I’m dealing with as a parent, or a challenge in helping him, his story is not my story and therefore not my story to tell. I am not obsessed with privacy or secrecy, but I don’t advertise everything he goes through. I hope that at some point in his life he might share some of that stuff himself, but until then, it remains his call. Occasionally I ask him if it’s okay if I write about something specific, but most of the time, I focus on me and my reactions, not on him. However, when he was young, he had some asthma and breathing issues, so COVID scares the bejesus out of me. I can say, no word of a lie, that I have fully believed until vaccination that if Jacob got sick, it was 50/50 if he would beat it. I suspected about 60/40, maybe 70/30 for me, but probably about even money given his lung and breathing issues already. That raises the household risk level too.
But both situations pale in comparison to Andrea’s world. She was diagnosed formally five years ago with non-Hodgkin’s lymphoma, a version called Waldenstrom macroglobulinemia. Normally, people wouldn’t know they had WM until symptoms show up as something else. But she was having other medical stuff done, and they noticed enlarged lymph nodes. They did a bone marrow test, and confirmed as WM.
When is cancer, not cancer? It is, there’s no “out” on that, but when the doctor tells you that if you’re going to get lymphoma, the non-Hodgkin’s version was the better / more treatable kind, and even within NH lymphoma, WM was a really good choice because it responds well to treatment, goes into remission well, and the treatment can be done multiple times over the lifetime. In short, it’s not an automatic death sentence. On the downside, it’s not something you can remove easily through preventative surgery. Instead, you do a “wait and see” approach, monitor proteins and symptoms, and hold off treatment until the symptoms start showing up.
So she got her diagnosis in 2017. Then crickets.
There was nothing to do. I was working for the government in a unit that deals with a lot of health issues. I told my boss “our” news (I’ll come back to that later), because I thought I might be missing work to help her and because I was also in a bit of a daze, and he mentioned that the doctors in the unit were good at explaining things sometimes. I nudged the oncology expert, and she came over to my cubicle the same day with all the latest medical research, best treatment protocols, lessons learned, etc. She had access to internal “experts” databases and she shared all of it with me, walked me through a bunch of it, gave me an outline of what to expect. The same way as if someone had said, “Hey, you’re going to set up a new database for outside client data? Let me tell you what you need to know.”
It was presented all matter-of-fact, no drama, just “hey, I’ve got info you don’t have, let me give it to you”, and then she went away with an offer to chat anytime I had questions. I never did, but I sure appreciated the opening salvo in the information war.
But after “we” worked through the initial shock, and got to the point of “okay, so I guess we’re waiting, nothing to do now”, the question was simply “who” would she tell and when?
And really, that’s an interesting paragraph. “We’re” waiting, but “she” would tell.
Because when you’re having a baby, it’s considered okay to say “we’re pregnant”. But when one of you gets cancer, regardless of the support and interaction, it’s still “she has cancer”, not me. It’s her disease, her issue, her domain to decide what to do or not. Her decision who to tell or not. In both situations, it’s still “her body”, but in this one, I have no ancillary role. I’m just along for the ride.
It obviously affects both Jacob and I. In my case, I talked about it with my social worker / therapist, and I shared the news with some close friends. I had to, because I needed support in figuring out my role, how to support her. Her call overall, but I needed to be able to share my part of it too. Not with any of her direct friends or family, of course, but I had talked to my bosses about it, purely to explain potential absences etc. I am a firm believer in sharing that info with bosses as it makes their approval of leave so much easier. I don’t mean just that it’s procedurally easier, it’s that it takes any guesswork out of the equation. And they’ve had training on this stuff, they know what they’re supposed to do, which is whatever I need, and it’s just easier to say, “Okay, so if something happens, we’ll deal with it, but it probably won’t”. And then I have to take her for a test in the middle of the day, and since they know why I’m asking, they’re not doing the official due diligence dance of wondering if it could have been scheduled at a better time, as some bosses might. Information vacuums make for bad HR management, so I share transparently what’s going on. My side of the news, with a nudge of hers.
She told her family, a couple of very close friends. And two coworkers who have dealt with or are currently dealing with similar issues. This past week, with news that she has to start treatment soon, she told all her family the treatment news plus she posted on Facebook. She told her coworkers since she’ll be off, and it came as a shock to many of them. After all, she doesn’t seem “sick”.
But early on, the biggest question was what to tell Jacob and when. And it was always going to be her call, but we were not on the same page with it. He was 7 at the time of diagnosis, and I fully agree that his age would limit any detailed discussion. “Inform to age-appropriate levels”, as they call it, seemed the way to go to me. But for her, and her doctor, the view was that she wasn’t going to be in treatment anytime soon, so did he need to know?
I watch a lot of TV and movies, I read a lot of books. We all know “revelations” of health status is a popular plot point. And more often than not, the plot point is around the person who doesn’t know something feeling betrayed when the health issues become manifest and they find out the sick person knew for years and didn’t tell them. While I don’t base my life on pop culture treatment, there is a reason that is a popular trope in stories. Because it happens.
The shock comes when they find out that you are sick. It’s big, there’s no way to soften that much. And they are hurt, angry, confused, and to be honest, complex emotions are the norm. And then they find out that you didn’t tell them something much earlier. That you have been keeping a giant secret from them. Maybe for good reasons, maybe for selfish reasons. But now they feel betrayed, and all that hurt, anger and confusion gets a target. You. Because YOU’RE the one making them feel this pain. Maybe it’s only temporary, maybe it wrecks the relationship, yet it isn’t uncommon in situations of serious illness.
For me, 99 times out of a 100, if I know something serious, I will share it with Jacob. I don’t hide things from him. I adjust for his age, sure, but he’s a smart kid with a good head on his shoulders and a heart on his sleeve, and I do not shield him from truth, if I can help it.
It was clearly Andrea’s call to make, and she made it, she wouldn’t tell him yet. I didn’t agree with that, but it wasn’t my call to make. Fast-forward a couple of years, Jacob was older and more able to understand things, and I suspect Andrea was then more comfortable with her diagnosis, so she shared the info with him to let him know she had lymphoma but they were just monitoring for now. I was hugely relieved, and over the last few months, even more so.
She’s had things going on for the last year or so, although more the last six months, and not all of them screaming “cancer symptoms”. Again, the details are not really mine to share, that’s her story if she chooses to share the details and her worries. But she got a bunch of recent tests back, it was more serious, more tests, confirmation, and she starts treatment in two weeks.
It’s definitely a paradigm shift.
If you read the above paragraphs, you’ll regularly see that I say she has a diagnosis, or lymphoma, or symptoms. I rarely say, she has cancer.
But yes, my wife has cancer. So there’s that.
I’ve known for five years, and after the initial shock, and limited attention to treatment protocols that would come at a much later date and might change considerably between now and then, the message was generally “wait and see, treatable but not curable”.
So I felt like an idiot last week. When we were briefed five years ago, I understood that she would be taking pills. Almost exclusively, I thought. It would be some sort of regimen that had a couple of intense days of medications, then four weeks wait to round 2, etc., for six months. I don’t want to underestimate that, but it seemed manageable. Yep, cancer treatment. But I thought it mostly meant pills. I knew from the material that I saw at the beginning that some people didn’t even miss work. This was obviously not your grandparents’ cancer regimen. It didn’t sound like fun, but it sounded, I guess, manageable?
Nope. I didn’t have any of that right. She’s off work, probably 6-9 months, maybe a year. It’s full cancer treatments, 6 hour treatments on day 1.1, 3h on day 1.2, 26 days of interval then round 2 (2.1 and 2.2). It’s two complicated-sounding drugs, B and R, and they do both on day 1, only one on day 2, and they do six rounds. She starts in less than two weeks. So, as they say, there’s that.
We really have no idea what to expect. The chemo is not the worst form of chemo, if that matters much before you start, and she’s unlikely to lose her hair or have much in the way of extreme side effects. Most people respond well to the treatment, and the meds are “well-tolerated” by most patients. She’s enrolling in an extra pilot that will likely mean extra pills twice a day for a year. The hope is everything goes well, she’ll start to notice a difference in symptoms in the first month, and she’ll be in remission for 5-10y, with likely another bout at some point with better protocols and treatment options.
What does this mean for me? I have no freaking clue, to be honest. I was not mentally prepared for Andrea to need to be off work for 9m, and I was not even mentally prepared for the word chemo. That was not what I was expecting at all for treatment, and I wasn’t even sure until about 2w ago that treatment was even likely yet. There could have been other things causing her latest symptoms. But no, the lymphoma is active and the most-likely cause of it all. Yet I wasn’t “worrying” about treatment needs for the last two weeks even because I didn’t know what to expect…or rather, what I expected was wrong. So while Andrea knew it was “start chemo”, I thought it was just “start pills”. Should I have handled that conversation or this issue differently? Was I supportive enough? I don’t know. Asymmetrical information is bad for HR, but it’s bad for being a supportive spouse too.
As mentioned, it is lymphoma, “a cancer of the lymphatic system, which is part of the body’s germ-fighting network. The lymphatic system includes the lymph nodes (lymph glands), spleen, thymus gland and bone marrow”.
So the obvious things need to get done. I’ll go with her for treatments, and hopefully be able to sit with her for it (if COVID protocols allow). I’ll be driving her back and forth anyway for all appointments and tests, since she doesn’t drive, even if she was able to take herself for some things. I don’t know quite how we’ll manage timings with Jacob because, well, he’s struggling with walking very far these days, so I’ve been taking him to and from school. We’ll adjust home life, routines, roles, whatever. We’ll figure it out. I’ve told Jacob it will be a tough time for mom, and well, for six months, he and I have to suck it up. He regularly gives her a hard time with his “duties” and schedule, and I told him I will be a pretty tough taskmaster for the next six months. It’s tough on him too, we discussed that, and he can bitch to me about anything he wants. But if he gives her a hard time on anything, I’ll deep-six his computer. We’ll also try and schedule more appointments for him with his social worker to talk about anything he doesn’t want to talk to us about right now.
For Andrea, she has joined a local support group online, and some of them have had it for years, with most of them a lot older than Andrea (which isn’t surprising as Andrea only knows she has it by accident, some people have it and won’t know until it kicks in 10-20y from now). Some of them scheduled their treatments on Thursday/Friday and went back to work — wait for it — on Monday. So we don’t know what to expect for her.
For me, I’m currently on an acting assignment at work as a Director, and as much as I’d like that to become permanent, it’s not much of a priority over the next six months. Jacob is up for surgery himself potentially in the next six months and if they come forward to do it, I’m inclined to push them off until the fall at least. Andrea’s treatments should be done by her birthday in September.
Oddly, the thought that keeps popping into my head is that I’m hopeful that we’ll get to use the gazebo and BBQ in the backyard a lot this summer, while making sure she has good options out there for comfort and for simple access to things like her tablet or phone while in good shade. If she can even be out there during the day, we don’t know much yet. But I also don’t want to assume she’ll be an invalid during the six months either.
I have diabetes with some active issues we’re resolving, Jacob has CP with pending surgery, and Andrea has cancer and is starting treatments soon. So we carry a high-level of risk and stress/worry.
But I no longer have to worry much about blogging and letting a veiled reference to Andrea’s health slip through that prompts unnecessary questions that she didn’t want to answer yet.
The cancer is real, and the privacy part still remains an issue. But the “secret” is out. Hell, I can even blog about it if I need/want to, as I do (almost) everything else.