As you may have noticed, I’m pretty open when it comes to talking about the fact that my daughter has cancer, and don’t hesitate to share some of the specifics. This is true offline as well as online.
But I’ve also learned to make judicious choices about if and when to drop the “C-bomb” on people who don’t know about our situation. When an acquaintance or client casually asks how I am, and how my family is doing, for example, my blithely saying “Oh fine, but one of our daughters has cancer, actually,” would just be cruel. You can’t do that to people.
In some situations I don’t bring it up at all. Other times I use the catch-all, “well, we’ve had some tough family stuff going on.” Occasionally, when a little more explanation is necessary, I’ve gone with “my daughter is ill,” but it sounds kind of weird and old-fashioned. I think if someone said that to me I’d picture their daughter coughing up blood into a handkerchief held by a turn-of-the-century nurse in a white pinafore. If I do choose to be more forthright, I sometimes apologize in advance: “Sorry to drop a bombshell, but the thing is….”
But as careful as I try to be, I know that our situation inevitably makes some people uncomfortable and/or bums them out. Because, I mean, jeez, nobody likes to think about children having cancer. Especially if they have children themselves, because then they can’t help imagining what it would be like if their child had cancer, and that’s no fun.
Sometimes even if a closer friend or acquaintance — who knows our situation well, and reads my blog or follows on Facebook — asks about things, I can tell midway through the conversation that I’m totally freaking them out.
Not too long ago a friend asked about Clio’s treatment regimen, and I started explaining her chemo and high-dose steroid pulses, and how they make her feel tired and lousy, but also turn her into a cranky, crazy person when it comes to food, and then how during withdrawal we have to drug her up with oxycodone and morphine for the pain, and how she’s super clingy with me the whole time, and how Elsa feels neglected and jealous, and the fact that it’s basically a really crappy week for all of us.
And all the while, I’m casually sipping a glass of wine, cracking the occasional sarcastic remark, rolling my eyes. (“You wouldn’t believe how much fucking frozen ravioli we go through when she’s on steroids. It’s insane. Buy stock in Stop & Shop. Seriously.”)
At some point in the midst of all this I realized that she was looking at me like I was insane. Because while to me all of this stuff is run of the mill by now — yes, we have to give our six year old ten thousand different kinds of poison, and feed her mass quantities of ravioli all the while — to her it probably sounded horrific. (And, my God, your daughter has CANCER!!)
Oh yeah. Right. She has cancer. Yeah, that’s kind of a drag. Could you pass the bread?
Clio, actually – and through no fault of her own, of course – even bums other cancer patients out. As she walks through Dana Farber with her cute little bald head or a fun hat, often holding a toy or stuffed animal and jabbering about one thing or another, I see older patients and their spouses or sisters or friends notice her and smile fondly and sadly. When we step into a crowded elevator, I can almost hear the thoughts of people around us: My loved one / me having cancer is terrible, but this is a thousand times worse. It shouldn’t happen to children. The poor dear. And that poor mother.
Once, I was talking with a man in line at the in-house pharmacy after he asked me about Clio, and he was almost in tears as I told him what she had, and how much treatment was ahead. When it was his turn to step up to the register he wished me all the best and then said, nodding in her direction, “That’s always the worst part of my day.” Meaning, I think, that he hated seeing the pediatric patients.
On the flip side, I think seeing cuties like Clio and the other kids getting treated at the Jimmy Fund clinic also brings a lot of smiles to people. They see how beautiful and brave they are. For other patients, maybe it’s inspiring. For the clinicians, maybe it makes them feel a sense of purpose.
But listen to me. I’m trying to read everybody’s minds here, and who knows what the heck people are actually thinking. I just know, having seen many a face fall over the past year, that pediatric cancer can be a real conversation stopper. I hate having constantly to be the bearer of bad news.
So, to change topics: The reason there’s a picture of the Electric Light Orchestra up there, if you haven’t put it together already, is that they, of course, sang the 1979 hit “Don’t Bring Me Down.” And, FYI, it’s not “Don’t bring me down, Bruce” (which for years I thought it was). It’s actually just a made-up syllable, “Grrooss!” (Thank you, Wikipedia.)
Cancer = Grroooss!
Well you know, it IS all about how the rest of us feel that’s important in the big picture of Clio’s cancer. Right?
Excellent incorporation of ELO.
I think you have enough on your mind without worrying whether you are bringing other people down. Share what you feel comfortable sharing and if people cannot handle it perhaps a dose of your reality will be good for them. Of course I get sad when I read about what y’all are going through–who wouldn’t? But it’s also inspiring to see your strength as you make your way through.
I think you and Clio are inspirations. You are both showing people how best to handle a shitty, shitty situation.
And I totally thought it was Bruce until just now.
I think that it does make people sad, who wouldn’t be sad? But the way you handle it and the humor you bring to some very difficult times does the opposite. It’s inspiring. I could only hope that if I were in a similarly difficult situation that I could cope as well as you.
I know just what you mean. I HATE telling new people. It’s not that I hate talking about it, I’m happy to talk about it to people who are genuinely interested, but telling new people is really hard, both because it reminds me of a time when this was not part of our lives and also because I have to watch the impact of the news on them. My daughter still has hair so it’s not quite as immediately obvious that there’s something going on with her, but she talks about it a lot herself, so when she makes a new friend there’s always that moment when she says something about chemo in the new friend’s mom’s hearing and I have to go through the story again.
I remember a similar feeling when my husband was deployed. I never knew when or if there was a time to mention that in some situations because people had all kinds of reactions that I didn’t necessarily have the energy to deal with. Plus there was the added fun of political elements to that, where people wanted to vent about the president or policy with my soldier husband in the middle and I just wanted to not think about any of it and just go about my life.
Eh. Screw us, who cares what we think? You take care of your family and yourself and let us freak out as needed. I think your heart grew four sizes not that you were a grinch to begin with but oh you know…
I always thought it was “Bruce,” too.
It’s not the same, but I have similar feelings when describing Ellie and what she’s been through and the feeding tube and all of that. Sometimes I’m overwhelmed by the fact that it sucks. And sometimes it’s just me telling a story about my life and my kids, and I’m going to make rude jokes and sarcastic comments like I’m just talking about general toddler nonsense instead of my weird kid who doesn’t know how to eat. And yeah, it throws people off. They don’t know what to say. Only those closest will nod and laugh and agree with me when I say that it sucks, and maybe even make a joke about it in return. But that’s a very select group.
I love “Don’t bring me down… Bruce!” so much that I’m never singing it another way ever again.
My mom died when I was younger, and I too would never know when or how to casually drop it into the conversation when family came up. Unlike my sister who enjoyed the shock value, I would try to avoid it as long as possible before telling people and then going “I’m so sorry” or something equally as ridiculous as apologizing for the fact my mom is dead. Now, my boys have CP and again unless someone outright asks why they’re not walking, I struggle with how to appropriately bring it up (because if you just looked at them in their stroller you’d never know). It’s not that I’m ashamed to admit it, it’s that I know people will have that look of pity on their face, all while trying to untangle their foot from the back of their throat. It’s hard to make people feel uncomfortable! I get it!
Same!
I think that’s one of the reasons I enjoyed Camp Okizu so much – we could talk about the nitty gritty and be both matter-of-fact about it AND still admit how hard it is without getting those shocked/uncomfortable reactions. Everyone around us just understood, so we didn’t have to expend energy comforting others or wondering if we’ve said too little/much.
That somewhat reminded me of when we were going through infertility. People would ask how we were and I was not in a good place with all the miscarriages and tests and treatments and drugs, so I would be honest about it and people reacted about the same way. They did not want to know or talk about it. I guess they wanted me to lie. Don’t ever feel you have to lie! If they can’t handle you being honest about your life that is their problem! Life is not always sunshine and rainbows 24/7 and we should not have to pretend it is!
I guess I get it a bit with Harrison and his autism and his problems at school too. People ask how he is doing at school or how is he liking it and so I either get to go into how much he hates it and how he gets suspended and all that or I can just like “Its fine”. I am honest by default though so I usually tell the truth about it.
I always felt like the people who are your real friends and family need to know the truth and should know the truth so they can be helpful and comforting to you. So don’t ever feel bad about being honest to them! For casual strangers if you wanna smile and nod and gloss it over, go right on ahead or drop a side of truth on them. Whatever fits your fancy.
Many of us have such sympathy for what you guys are going through. I don’t have kids and don’t know you in real life, but truly do care what happens to Clio, Elsa and you and alistair. By no means should you be concerned about bringing people down. We all have crap we deal with. I was in a nasty car accident, no one really cares 😉
Yet again you have hit the nail squarely on the head. The thing that makes cancer different is that it is a very obvious disease–it announces itself via the kid’s appearance. So there’s no way to avoid “The Look” people give us. One time in the elevator at Dana Farber, a woman (who I’m guessing was a paid caregiver) pushing an adult male patient in a wheel chair, exclaimed loudly upon seeing my son, “Oh my God! He’s breaking my heart!!!!” How the hell does one respond to that (without violence)? For very private people like myself, this public display of my family’s personal tragedy and misery is unbearable. Thank you for writing so well.
The world can handle it – truly. I do understand the complexity, though, at least a little bit. I lost my second child at the end of my pregnancy with her, and it’s always weird to tell people who don’t know, those who look at my beautiful family (a five year old and 1 1/2 year old twins) and have no idea that there should be another one there between them. And I certainly don’t tell every person I meet, but if it’s someone I expect to see again, it’s much much better to get it out there. Unlike you, who can’t hide the fact that Clio has cancer, I could hide the existence of my second child – but doing so is way too weird. My trick has been to say it and quickly follow it up with something else so I don’t leave that big gaping awkward sad silence. Thanks for your blog and for sharing your story.