Telling My Daughter About Cancer

Of all the cruel blows cancer offers, the worst one is having to tell your child.  

The thought of this glass wall of safety, of the belief in the world shattering yet again – it fills me with grief. 

I have felt that childhood has its own rights: safety, security, love, reasonable comforts, a belief in the ongoing goodwill and buoyancy of the world. I have, like mothers do, held these around my middle school daughter like blankets to prevent a chill, dropping one or two occasionally but quickly picking them back up again. And her father, too, a man I have grown to love even more, who is bewildered by what is happening but quick to rally:  he continues to nail back the boards of this falling house, continues to prop up the sagging fences.

The time had come to tell our daughter about this recurrence. 

For a month we talked about how to do this. For this time, this occurrence, we wanted to be much more intentional. We wanted to monitor how much information she received, and we wanted clarity and simplicity. We also wanted – and here is the hardest part – to impart hope, even when to summon it was an act that did not feel fully true. 

Here is what we did:

     1.  We waited. We let ourselves first, in private, process and react and talk. In the early morning hours, we wept together. We let ourselves grieve first.

      2. We met with our hospital’s oncology social worker, who walked us through the process of telling her and even role-played potentially difficult questions. She also gave us two resources to start with, which I will offer links to here. I’m in the SF Bay Area, but these are available in other areas, too:

•   Camp Kesem – A FREE, wonderful camp for kids of all ages to meet, have fun with, and talk about their experiences of having a parent with cancer. We had heard about them and participated in their events before. If I could holler on every rooftop about this organization, I would, and if you ever need a charity to donate to, may this be the one. Our daughter has loved every single counselor she’s met in her experiences with Camp Kesem, and I thank God they exist.
• Circle of Care – While I have only interacted via email and phone with the staff here, they have been incredibly supportive and resourceful. 

3. We planned the timing of it. Our daughter was on an outdoor field trip with her school, so we had about a week to plan. This was possibly the most important part. We wanted to make sure that it was on a Friday, so that she had the weekend to stay home, go out, talk, or have any and all feelings that came up.

4. Finally, we became clear about what we would say: That this was a recurrence, that I was in treatment for it, that we would take it one step at a time. That I was currently still healthy and able to do all the usual things, and that she had permission to ask absolutely anything. Also, that the doctors were doing everything they could to help.

5.  Equally important: we were clear about what we wouldn’t say. We would not talk about the odds of this treatment working (30-40%). We would not talk about “what ifs” unless she specifically asked, and even then frame it with caution and hope. I hope that does not come across as deceptive, we did not mean it so. There is some small lantern that parents must carry for their child, isn’t there?  It’s the one that give the strength to keep going on and gives your child’s legs muscle. It is hope, it is love – and though I am not often Biblical – it is faith.


And so, holding hands across this bridge, we told her.

...

And it was pretty anticlimactic. She briefly furrowed her brow. She paused, bit into her burger. She asked, “How big is it?” then asked where it was. When I lifted my shirt to show her, she gave the middle finger, placed it over the tumor and said, “Eff* you, cancer.”

Then: “Can I go on the computer now?”



I love her.**





(*She actually said “eff.” It was dinner, and she wanted to be respectful.)

(** I will also love her when her reactions challenge us. We know there will be more to come. )

(She also has no idea I'm writing this blog.)

Test Results: A Threshold and Possible/Likely Decline

The test results are in. The tumor is malignant, triple negative (again), and under my armpit, near the original site. It’s 5 cm, up against the rib and according to the oncologist, “trying to touch it,” and currently any operation to remove it would result in disfigurement. The goal now? Reduce the size so that it can be safely removed.

No mets to organs or bones, thank God.

But that’s small consolation right now. The bottom line is that it’s back. Not two years after finishing treatment, and it’s back. The grief and shock are not as great this time around, at least not visibly, but I am numb. Numb and deeply depressed and angry. My grief is not the sudden slam against a wall, but more like slow drowning.

Because this is a kind of threshold.

During the first round of treatment, the word “cure” was bandied about by doctors, nurses, myself and friends -- and it floated through my mind like a bright butterfly. Sometimes it would land, pause for a moment, and fly off, but it was often in view. Optimism was still a possibility, I could look to the sunset and plan for Hawaii. Phrases like “long-term survival” and “preventing recurrence” became touchstones for me, the marker on the racetrack that gave me strength for another lap. I started saving again for retirement. I planned a few trips.

But the cancer is back. And what that means is that treatment options shrink. It means that the cancer is wily, never quite went away, had dormant cells that managed to resist the Strongest Possible Regimen that Medical Science Had to Offer. It means a growing resistance to chemotherapies, and a higher likelihood of future recurrence. It means, in all likelihood, repeated comebacks of the cancer kid.

And my own weakening body as each future treatment unfolds.

I don’t know what to say. I wake each day and walk into my daughter’s room, see her breathing, see her eyes closed.  She doesn’t know yet that the cancer's come back. I want to preserve her innocence a little longer, protect her from the fear and grief to come. Angel of childhood, I pray, protect her from the dark bed of sadness. Give her a mother who is here to keep. But I know this is not heaven. 

It is earth, and there are only birds, and daylight, and the ongoing traffic.

Things Not to Do When Waiting for Test Results

If you are waiting for test results, welcome. Welcome to the place where the ground is removed from beneath your feet, and the ship is listing left, then right, but never centered. It's the place I'm in now, waiting. Waiting to hear what I know already is not good news. It's just a matter of one side, which is not-so-bad, to the other, which is The Worst. Hard not to get seasick, hard not to crash. 

But I've learned a few things on this awful road. A few things not to do, now that I've been through it once already. This is by no means a definitive list, and take it with a grain of salt. I'm a big fan of the "Whatever works best for you" school of thinking, yet I hope some of these are helpful. They come from my own experience, and the fact that I've screwed up on every single one. Badly. 

So here it is, the not-so-definitive and only partially complete list. Please feel free to add your own! 

If you are waiting for test results, do not:

1 1. Google. I know, the temptation lurks but trust me: Google is not your friend. I don’t know what is wrong with their cancer search algorithm, but there seems to be some programmed result that always takes you to The Worst Possible Prognosis, or Death. They don’t tell you about clinical trials or new research, or long-term survivors. It will not give you hope. The lesson? You and your disease are not an internet search. It will only make you feel bad. Don’t do it.

    2. Tell everybody. I learned this the hard way. After my first diagnosis, I called and told everyone. Pretty much right away. I was in shock, terrified, flailing desperately for a nonexistent emotional lifeboat. My unregulated emotional state created havoc on my family and friends although, bless them, bless us all, we have all forgiven each other. This time, after the initial news from the recurrence, I was in shock and wanted to call and cry and scream and tell…..but I didn’t. And I’m glad I didn’t. As much as this diagnosis and the process impacts you, it impacts others, too. If you are on a work team, it impacts morale. It impacts your friends, your family. Also? If you’re still waiting for test results, the truth is that you don’t know enough yet. So:  Be judicious in who you tell, and why, and make sure they sit on your side of the bleachers. In the coming days, you’ll need them.

   3. Retreat too much. As an introvert, I understand the need to curl up and withdraw from this world. Dear God do I get that. And yet and yet ---- it helps to keep a foot out the door, one coffee date, one needed time to phone a friend. Also: people want to help, people want to feel needed. So, while you/we/I sit on the boat without a bottom called Waiting, it can help to keep connected. But  take this with a grain of salt, too. Weep and stay home if you need to. There’s no one way to grieve.

Bottom line is, if you have been given a recurrence diagnosis, I offer sincerest and heartfelt empathy. Because guess what? It’s baaaaaccckk… and that’s a whole new round of what-to-dos, isn’t it? Terror again, fear again, and the knowledge that the first round didn’t knock it out. I’m so sorry. I’m so very sorry.

You are not alone.