Read Chapter 2: HERE
Chapter 3: Sharing the Burden
After reading about the side effects of chemotherapy, probably the first thing I really looked for and researched was what the ‘experts’ had to say about telling the kids. I’m a pretty private person. (If you're reading this blog and thinking. . . "What? What don't you feel comfortable sharing?". That's just on the blog. In person I don't like talking about "stuff".) More private than my wife, but this was her burden, and if she could lighten it by sharing it with her friends, then so be it. I told her my preference was to just tell our closer friends and family only, but I wasn’t passionate about the privacy of the matter, and ultimately it was her decision. Regardless of the decision, the one that caused me heartburn was Emma, my older daughter; I didn’t want to tell her “wrong”.
Emma is a bright, sensitive girl. But identical news shared with her two different ways could be counted on to elicit two wildly different reactions. I suppose that’s true with anyone. News put bluntly and insensitively is more likely to upset someone than the same news carefully couched and tenderly phrased. Emma might burst into tears or laughter at much lighter tidings though, so I was concerned.
No matter what I read there was no consensus but this: “Tell the truth and share what you’re comfortable sharing.” I think I’d hoped for study results with percentages and lower incidences of depression/blah blah blah in demographics of female children ages 6 – 8 etc, etc, etc, and there wasn’t anything like that. I wanted the news shared with her in a way that would cause her the least confusion and concern, while still conveying its importance.
Lily was less of a concern. She wouldn’t notice. We could tell her anything and it would almost certainly be met with, “I want Wiggles.” Problem solved. Emma, however, would require some thought.
I told my boss. In fact, my boss was the first person (not in the family) I told. I didn’t want to do it. It was a personal issue, and work is not a place for personal issues. But I knew I was going to have to be away from work to take Leslie to appointments and sit with her during treatments, and there was just no way around telling him. And it was good that I told him. It gave me a confidante. I hadn’t told my friends yet, and because I felt I had to discuss the agenda for treatment as it impacted my work schedule, and because I’m comfortable discussing other things with him, he was able to give me his opinions on how to tell Emma. He has two kids of his own, and he was the first person to raise the issue of “if you tell other people, their kids are going to hear about it, and if their kids hear about it, eventually Emma’s going to hear it from those kids. You want her to hear it from you, so you can control how she learns." I put that in quotes. . . but you know. . . probably he said it better.
I told my boss that I wasn’t keeping the news a secret, but neither was I telling anyone, if that made sense. He understood. He did tell his boss, however, and they requisitioned a laptop for me so that I could minimize the amount of sick time, by allowing me to “work from home”.
I probably undervalued my own need to share the burden. It was nice to be able to talk openly to someone about something that was occupying an ever-increasing portion of my thoughts. I usually pooh-pooh the idea of sharing feelings, and maybe it wasn’t so much the sharing of feelings that I was doing, but talking about the process did help me to make it seem a little less daunting, and to feel like I had someone in my corner.
We knew we had to tell Emma, but hadn’t, and the time-table for this family conference was bumped up in importance by an encounter outside of daycare one day as I held Emma’s hand and walked up the hill to get my car. A friend of Leslie’s was driving down the hill. She saw me walking up and slowed down. I waved briefly and smiled. The window slowly rolled down. She favored me with such a look of pitying, head-tilting, eyebrow arched sympathy that I knew she ‘knew’. Leslie hadn’t told her, but someone had. I immediately looked at Emma to see if she had noticed. She seemed oblivious.
“How’s Leslie doing?” she asked, apparently from her tone and expression, she expected Last Rites were being administered at that moment, or in the near future.
“She’s fine,” I said, breezily. Let’s move past this moment, please, I thought.
“IS she?” she asked. I was clearly being brave, she must have thought.
“Yeah, she’s great,” I said, attempting to somehow make “she’s great” convey the meaning, “We haven’t told Emma that anything’s wrong yet, and I’d really like to do it in a way that doesn’t scare the shit out of her so please let’s move past this.”
She nodded seriously and told me that she and her husband were thinking about us and if there was anything we needed. . .
It was a very nice heartfelt exchange made extremely uncomfortable by virtue of the fact that the subject matter was being kept secret from the girl whose little fingers were currently intertwined with my own. We had to tell Emma soon.
In the end we elected to “tell the truth and share what we were comfortable sharing.” Thanks, books! What we told her was that Mommy had found a bump, and that she needed to get it removed. We told her that the doctors would have to remove it with surgery, but that mommy would be asleep and it wouldn’t hurt. We also phrased the discussion of chemotherapy and hairloss like it was an amusing and wonderful story. . . “And get this, Emma, the medicine they give mommy to make the bump smaller will make all her hair fall out!”
“Yeah! She’ll be totally bald!”
“Ewww, that might freak me out!”
We told her that Mommy would be tired after the treatment and that she’d need to be a big girl and help out Daddy because Mommy might not feel well enough to do some of the things she usually did once they gave her the medicine. We didn’t use the word ‘cancer’. We were afraid that if she used the word to her friends they might trot out the word ‘death’ in a little playground word association game, and we thought that might be a troubling development for an 8 year old to accept. Emma was a trooper. She absorbed the information we provided her easily. Woohoo! We’re awesome parents.
We counseled her that this wasn’t something we wanted her to discuss with her friends. We figured this way it was less likely that they’d start raising fears and doubts in her sensitive little mind and start creating the sort of anxiety that our little talk was meant to proactively defuse. It’s not a secret, we said. Some of your friends may know about it. We’d just prefer you not bring it up.
What troubled Emma most, it turned out, was that Mommy was going to have a doctor cut her, and that worried her. About four days after we told Emma Mommy’s secret we got a call from the school. Emma was having an anxiety attack. She was clawing at her chest and she was crying uncontrollably in music class. The music teacher couldn’t get her to stop, and the biggest concern of all (stupid stupid stupid), when he asked her what was the matter, all she would say was that, “Mommy and Daddy told me not to tell anyone about it.”
Oh god, awful, awful parents, to entrust a secret like that to a little girl and then tell her she cannot share HER burden with anyone, a burden so big that grownups have to share it to ease their own minds, but forbid the eight year old any way of venting her concerns. I felt like crying. We picked her up from school.
We told Emma’s teacher. And we told the school counselor. And we told the music director. They needed to know. They helped us make sure that Emma would be able to share her burden with someone. They helped us make sure Emma was “okay with things” when Emma wasn’t with us. They developed special “code words” that would allow Emma to communicate her need to talk about what was going on with Mommy to someone, and they would see to it that Emma was able to share her concerns and address them so they wouldn’t build up inside her and explode out of her in tears and hives.
That was the last such episode, though. Mostly she seemed fascinated by the idea of seeing Leslie without hair. We’d catch her looking at her mother askance and when questioned, she responded, “I’m just trying to imagine how mommy will look when she loses her hair.”
Our decision to not mention the “C” word may have been a good thought, but proved unnecessary. Watching the football playoffs several commercials showing a hairless child being entertained by a star athlete put a seed in her brain that grew into, “Mommy, do you have cancer?”
“Yes, Emma.” Then, hesitantly, “Where did you hear that word?”
“On the TV. That kid on the commercial.”
“We didn’t want to scare you. Cancer is a scary word.”
“Cancer isn’t a scary word. Diabetes is a scary word. Hemophilia is a scary word. Cancer isn’t a scary word.”
Huh. Okay then.
Leslie told her boss. Her work ethic is amazing, and it’s recognized in her office. She got permission to work from home for a month until she knew how she’d react to chemo. Mid month she got permission to keep on doing it as long as she needed.
We told friends. Friends, of course, told other friends. Most of them didn’t know how to take the news. They thought, as we had, that Leslie was dying. To this day I'm convinced that there were people who refused to call for fear that they would interrupt Leslie in the midst of her death throes. It’s one of the things that undermines Leslie’s positive attitude most; being treated as if she’s about to die. She wasn't confident enough in her prognosis yet to be able to constantly field the mournful pity of ignorant friends. Ignorant is harsh. I mean ignorant in the way we ourselves were ignorant on “The Day My Wife Was Dying”, uneducated about what to expect, uncertain about her future, and scared. When I tell friends, I almost always include some variation on the theme, “This is bad news, but it gets better.” I also almost always explain how bad the news was on the day we learned, and how good it is now by comparison. I think that helps people understand not only is the future brighter than we originally thought, but if they thought the worst when they heard the news, they weren’t alone in thinking it.
The friends who told their friends and so on turned into meals every other night provided by friends and church groups. Literally every other night for the next six months someone was scheduled to bring us dinner. Leslie had the website address that showed who was responsible, what they were bringing, and when. Every dinner ended up being enough for about six dinners and the leftovers accumulated faster than we could find storage for them. The negative of this, and it’s so minor it’s almost not worth mentioning, is that the food we bought at the grocery store slowly wasted away, rotteed, and was discarded as we continued not cooking our own meals and eating what people brought us. But having someone bring a prepared meal on nights when I was left to bathe kids, put kids to bed, make lunches and dinners for kids and us was amazing. It’s an hour or more of time every night that could be spent getting things ready for the evening and the following morning when Leslie was too sick to lend her familiar helping hand.
So many people stepped up to help us when we needed it most. And that more than anything else is the justification for sharing the burden. And the more help we got the less stressed I felt. And I ordinarily HATE getting help. I always feel like I’m indebted and I hate that feeling. But sometimes it’s just too big to handle alone. Sometimes it’s stupid not to accept help freely offered. Feeling indebted to someone because of his generosity is sometimes a small price to pay for taking some of the weight and stress off the person you love when she’s going through something like cancer. And being the strong silent type isn’t the help she needs.
We have an acquaintance who was diagnosed with breast cancer. It’s a “secret.” We found out about it the same way Leslie’s friend driving down the hill at daycare found out about Leslie’s cancer, on the sly. This acquaintance is keeping her cancer secret. I respect her/their decision, but I look at how much help and support we’ve received and I want to call her up and tell her she should share the burden, lighten the load a little. But I don’t “know” she has cancer, so I can’t.
It seems like each new person we share our news with provides us with some additional help or support. Whether it’s being flexible with work schedules, bringing meals, picking up or dropping off kids, keeping an eye on an emotional child, or just giving hugs and encouragement, there hasn’t been a person yet with whom I’ve regretted sharing our news.
And that's it. . . that's what I had written two years ago about our experience with Cancer. I'd planned to write one Chapter called: Chemo from A to Z (We've Got a Pill for That), one called The Benefits of Cancer, and then a Final Chapter talking about radiation and recovery, but I don't know. . . I got away from it and never came back. But here I am, and before I talk about where we are now, maybe I'll finish the story of where we were then. But Leslie's had a recurrence. The cancer came back, like that infernal cat in the kid's song. Wasn't supposed to, but did. And the prognosis is the same. . . it's just a bitch that it has to be treated all over again.