When No News is Good News

nonewsisgoodnewsThis 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.

5 comments

  1. I know exactly how you feel! I go for my mri in April and my worries are so like yours! I had a craniotomy last April to remove the little or big sucker should I say but lije you the other options have to be kept for rainy days and I’m now pretty much wait and see. All the comfort I can give you is Be Brave – no amount of worry or anxiety will change our outcome and no matter what I get the feeling that like me you’ll deal with it just fine. Xo

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  2. I am in the very same situation with my lungs. Watch and wait. It is unnerving to say the least. And like you, when I get that letter, it draws a line in the sand and I cannot plan beyond. So sorry you need to deal with this. Others may have it worse… This is still damn hard. ~Catherine

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  3. I can relate to so much of what you’re saying, in regards to my husband. After his brain surgery in 1989 where they removed most of the tumor, the neurologist said they wouldn’t do radiation because it could damage his brain more. I’m glad we went with that approach because he’s lived over 20 yrs. With it and no other surgery ( except a shunt revision). The tumor has grown some..3cm..a little bigger than a quarter, and now we’re looking at a possible surgery and radiation..or, we could do nothing! It’s so hard to know what’s best and in some ways it seems it would be easier if the doctors would say, “You have to have it out NOW”, or, “Let’s just wait and observe it since you are not having many symptoms.” But, they just tell us what they COULD do and leave it up to us. My husband is on a very low dose of 4mg. Dexamethasone ( Decadron) now because of some edema in his brain. He was having trouble with word finding, and I’ve seen a little improvement since he’s been on it ( about 1 month). All in all, I’m so thankful he’s been able to live many years..I know many people aren’t as fortunate! I hope that yours is more like that too and that you will have many years ahead!!

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    1. Hi, Jo, thanks for sharing your experiences. I think you really captured the feeling perfectly, where you really do wish someone would just tell you what to do!!! I wish you and your husband the best; I really believe I’ve had good results taking sugar out of my diet and replacing it with healthy fats for energy. This “ketogenic diet” approach has been shown by credible research to really challenge growth of tumours, especially brain tumours. If you’re not familiar with it, I’d encourage you to investigate it.

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  4. […] I’ve written before about this strange feeling, where you have to get used to the idea that no news really is good news. That was the case again yesterday, no change in my little oligoastrocyto pal. Marla. (Palahniuk […]

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