This is an old adage, time tested, the “no news is good news” idea. When I used to drive home for weekends from university, my mother used to say that I shouldn’t promise to call when I got back to school, because surely she would hear if something bad happened, and if I promised and then forgot, she would worry. So we just relied on the axiom and went about our business.
I am on a watchful waiting program of management of this brain tumour. This means, literally, that no news is good news. It turns out that’s not so easy to live by, I’m finding. When my doctors first suggested that no immediate intervention was necessary, I wasn’t sure what to make of that. You get on the carousel of medical appointments, hospital for biopsy (that’s BRAIN SURGERY, how dramatic!), more specialists, everyone wants to test you or scan you or vampire up some of your blood, and then…okay, off home you go, back to regularly scheduled programming. WHAT’s that, now, I said?
I mean, really, I had been mildly concerned about the symptoms I’d been experiencing for almost a year. Then it took eight months to go through the steps of getting from my GP to a neurologist to my first MRI, to the fateful day my cell phone rang at work and my neurologist said “I’ve just looked at your MRI, it appears you have a glioma, go to Emergency”. After that, it took another three months to get in for surgery and get back results on what kind of beast we were dealing with. You spend a lot of time preparing yourself to deal with the unknown, thinking about the possibilities (surgery, chemo, radiation, am I going to lose my hair, how long will I have to be off work, wait, am I even going back to work, hey, should I be worrying about this actually killing me – if it does, it’ll probably take awhile, let’s worry about that later – again, what about my hair, I’m not worried about puking or feeling sick, I can do that, but my hair, oh wow how shallow am I anyway….), and then you spend a lot of time trying not to think about the possibilities.
And then that vast unknown, all of those possibilities – shallow or otherwise – that I’d girded myself to discuss, all pretty much burned off like so much mist in morning sun. My doctors ticked through the available options: if my mild seizures could be controlled through medication, with the location of the tumour near the motor cortex, let’s reserve surgery because the cost/benefit ratio may be unfavourable. That is, I might end up with a motor deficit on my right side that wasn’t necessary. Chemo is only a good option so many times, your body can only take it so many times, so let’s save that one up too. Radiation can have risks, long term, and I’m young. Let’s save that up, too. Finally, a repeated message sunk in. We’re saving up options because, one, these guys aren’t worried about just leaving that thing alone in there for now, as long as they can keep a beady MRI eyeball on it; two, everyone thinks we’ve got some (relatively indeterminate) length of time, stretching into the future, over which we’ll want to space out all of these treatment options. That should be good. Right?
Frankly, it took me awhile, and multiple conversations with my husband that he likely found more than a little repetitive, irritating, and round and round the mulberry bush-ish, to conclude that this was sort of a “first do no harm” kind of situation. It was difficult to resist the driving urge to want someone to do SOMETHING. Cut it out. Burn it up. Kill it dead. I had prepared myself for any or all of these paths forward. The idea that things could definitely get worse finally let me put that octopus to bed and tuck it in tight, sheets right up to its chinny chin chin.
On April 1, I go for my fifth MRI. That’s two years from my first diagnostic scan. I’m still trying to improve at the new normal. I get a letter a month in advance notifying me of the scan date. That’s the trigger to start thinking “Oh, I can’t plan much past April, who knows what will happen, I better not commit to that next hair appointment”. It’s true, I think things like that 50 times a day in the month before my scan, just because I got that letter. This month, I also found two strange lumps that I had to go to my GP about, so that he could tell me they were not of concern. Yeah, now I’m that crazy patient. That scan letter wakes up all kinds of little nigglers, it does.
After April 1st, I’ll wait, with building tension and an ever-shortening temper (sorry family and co-workers), for two weeks to go see my oncologist to receive the scan results. That appointment will loom large the second I sit up out of the MRI machine. I’ll have to go to the Cancer Center. They’ll be very nice to me there. I’ll wonder if they’re being extra nice because they already know something bad. I’ll make jokes to show everyone how in stride I take all of this. I will have to pee a ridiculous number of times and I will suffer from Nervous Bowels.
And if I’m very very fortunate, all of that buildup will peak with a ten minute appointment where the oncologist will tell me “there is no change” in the radiologist’s report. See you in six months.
I am acutely aware that on that day, I will wait beside many people who would happily trade places with me. But somehow knowing someone else is sicker than you doesn’t really make you feel better. Or if it does, it also makes you feel guilty that it made you feel better for a minute. You see, I think I have to be very careful what I wish for, because right now No News is Good News.