From the time my oldest child, Paige, was born everyone kept telling me, “Just you wait.”
When she made it through the terrible twos without much of a tantrum everyone kept telling me, “Just you wait.”
When she made it through elementary school and a move from NYC without trouble they kept saying, “Just you wait.”
“Just you wait,” they said, “girls are drama. You got lucky before. But the teen years? Oh boy… just you wait.”
Today she prepared me a bowl of soup and brought it up to my bedroom. I was resting after my surgery to remove malignant lymph nodes and tissue for testing yesterday, the room was dark. I invited her to come snuggle with me in the big bed. We’ve never let our children sleep in our bed so they think climbing in is a big treat.
I asked her if she wanted to talk about what was going on, about my news about having metastatic breast cancer. She did.
And so it began: an hour-long talk that started with her first question, “Are you scared?”
She asked questions about genetics and risks of getting cancer to what kind of treatments I might need.
She asked me again, as if to confirm for herself, “It’s not curable, right?”
We talked about my writing, about being public with my health status, about being open and honest with her and her brothers.
I told her that yes, I was scared. I explained that my fear usually comes from the unknown, in this case just how I will respond to treatments. I told her it was okay to be scared. That it’s normal, that sometimes fear makes you brave enough to do things you don’t think you can otherwise do.
I told her that I understood that sickness could be scary, that I didn’t want her to be afraid of me as I got sicker someday. “I would never be afraid of you, Mom. I’m only afraid of cancer,” she said. My heart squeezed and thrashed and the tears flowed.
We talked about her desire to be a doctor, a surgeon. She wanted to know what all of my surgeries and treatments had done. She wanted to know the difference between cancer “stage” and “grade.” We talked about the genetics of breast cancer and discussed the BRCA-1 and 2 genes (which I do not have). We talked about hormones and their role in puberty, menopause, and cancer. She wanted to know why outcomes are so variable. How will we know if treatments are working? I told her about the importance of her monitoring her own health, how hopefully we will have better screenings down the road.
I told her that for now I want her to live her life, for our house to be as normal as it can be for as long as it can be.
I told her she should try to focus on her schoolwork, her sports, and her friends. She told me that I was more important.
I told her that eventually I might need someone to help take care of me. “I will take care of you, Mom. You’ve always taken care of us,” she said.
We talked about her brothers, ages 11 and 6 and how she was going to have to help them. And her dad too. “I’m really good with hospitals and medical things, Mom… I’m just like you.”
She said she liked that I was open about it. That people knew. She thought it was best to be honest and appreciated the offers of support she’d received from friends and adults she knows.
I told her that what we were doing, lying there talking for an hour together about this, was the most important thing we could be doing today. I told her there wasn’t anything more important to me than my family. My job is to help them deal with this. Whatever this is.
I explained that what she needed from me would likely differ from what her brothers need; she is older and each of them would have different needs along the way. It’s my job to figure that out and address it. And my husband’s job now, too. How I take the lead on this will be important.
She asked if that was a lot of pressure, to have so many people reading my words, watching what I was doing. I told her it was. I told her it was my way of trying to help people. The same way that she wants to be a doctor to help others… well, I have always tried to see if I could help in my own way. And the way we talked before about the unknown being what’s scary? Well, my writing here means it’s less mysterious. Knowledge helps. Even if the knowledge is not what you want to hear, knowing is better.
Denial won’t change the course of things, and often makes things worse.
Secrecy is bad. Sharing and supporting are what I champion. And I know that de-mystification is a constant effort. I will continue to teach my children daily. I said I hoped that somewhere in all of this she could see how important science and medicine are in my world. And that if she does decide to be a doctor that is a noble effort. She will make me proud in whatever she does. As will my boys.
The funny thing is how much better I felt after we talked. The conversation was the hardest one I’ve had. The topics are gut-wrenching. But shining the light on them, on this disease, on what happens next, is the only way I know to cope, to help, to keep going.
We talked on and on as I combed my fingers through her long hair. I stroked her smooth, soft cheek. She was giving me strength.
And what I realized about people saying I should just wait because she’s going to eventually act out:
Waiting is a luxury.
Waiting means having time.
And that’s what I want most in this world right now.1
- Originally written October, 2012 and slightly edited in October, 2014 [↩]
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Lisa – you are amazing and inspiring – thank you for sharing. Please encourage your daughter to carry on the writing so we can see how your family grow and flourish and she becomes a doctor or surgeon – that would be wonderful!
It’s so hard for you both Lisa. People say to me I was lucky I got to say goodbye to my mam but we never had that conversation. Yes I had to tell her not to be afraid, her poor body was tired and that we will never be apart, even though it broke my heart I knew I couldn’t be selfish and make her hold on longer. Sometimes though I find myself thinking I should’ve asked her how in the name of god am I going to cope without her? Because it’s so so hard. I wasn’t prepared for how painful and lonely it would be. I hope someday I can think of our happy times x
My lord that was so unbelievably beautiful ..xxxxxxxx love to you and your entire family …ashley
Lisa, I don’t usually comment, but I always read and meditate on your posts. This particular piece is especially moving to me, being both a daughter and a mother of a daughter myself. Your magnificent spirit shines brightly in your daughter. These conversations will stay with her and continue to guide her for all of her days. What a gift.
You are a wonderful inspiring mother and your daughter is so insightful. the words are amazing. Thank you for posting that.
Wow, how beautiful. You are so right about shedding light and knowing the truth, even if you don’t want to hear it. Living in denial is usually worse.
I love the picture of you and your daughter — you are both such beauties. Based on your post, both inside and out.
What a great blessing to have shared with each other in that way! I have been going through some similar conversations with my mom (she’s 77 tomorrow) and although they are hard, they continue to bring us closer than I could have ever imagined. That’s love growing.
Sending you lots of love and hugs,
Helen
Thank you for your willingness to share.
Thank you for sharing this, Lisa. These are tough conversations for a mother to have.
Lisa,
I don’t know you but I know you are an amazing, incredible mother. You are doing the most important job in the world – raising compassionate, kind, caring, bright human beings. None of us should really be “waiting” for anything; it’s only an illusion that I have all the time in the world simply because today I don’t have cancer. Life is unpredictable. You have taught me the power of now. Thank you for this.
I understand that you are no longer on a plateau, that if and when you arrive at a new one, you can navigate its limits. I understand that the overall arc of MBC is pretty well set, although from moment to moment, plateau to plateau, it’s a matter of probabilities AND of possibilities, that for you those possibilities are often in terms of effective and worthwhile (there’s that word again) action. That much on some level I understand. What I am not yet mature enough to understand is how through all of that, you find the strength to make meaning, to inspire people, to help your family. I will have to follow some similar arc. I have had my brushes already. When I do, I hope i can develop at least some similar strength. Thank you, as always.
THAT. GIRL. <3
Your daughter is your mirror…how proud you must be!
double brilliance, wow.
Oh, dearheart. Be a doctor. Or don’t. Act out. Or don’t. You will always be a credit to your mother, always be someone your mother cherishes. You will be a rich young adult, and a rich adult, for having had such open and vulnerable conversations. Not everyone learns to do that, particularly before the age of 20. I wish you hadn’t had cause to learn the skill. I wish you’d all had the luxury of waiting.
Beautiful. My thoughts are with you.
Lisa: You are an amazing, incredible woman and mother. What a great blessing to have shared with your children in a way that they could understand and not be afraid. I would have loved to have had similar conversations with my mom . Alas, it was not to be and I think about those days a lot as time goes on. Thank you for sharing with us ! my thoughts and prayers are with you
Thank you for this post. It gives me the courage to keep talking to my four littles.
My sister was just diagnosed with the 2nd cancer within the last 12 years. In 2002 she battled stage IV ovarian cancer, germ cell/teratoma. The doctors were able to surgically remove most of the cancer followed by chemo. She was cancer-free.
September 23rd she was diagnosed with small-cell carcinoma limited to her right lung and the lymph nodes in her right armpit.
I am so grateful for your blog and your honesty and openness.
I am here from Pa to love & support her. On some days I am not sure what she really needs, I try to be where she is, careful not to push her past her comfort zone.
I don’t remember how my search came across your blog, but I’m glad it did. I wish there was some way of waving a magic wand and POOF, you’d be 100% healthy. I hope that you gain strength & your health back, to win this fight. You have a beautiful family, and they are lucky to have you. I know you’ve changed so many people for the better, with your writings. Thank you for allowing us all in, granted we are all strangers to you, you feel like a good friend to us. I won’t let go of hope for you, and will keep you and your family in our prayers! Sending positive, warm vibes to you Lisa!
Living with a husband I love for 45 years and supporting him with cancer for 10 I was so comforted to read your blog. He has just been diagnosed with cancer in the spine, a secondary to his prostrate cancer. I feel so helpless to watch him in excruciating pain, which the oncologist is trying to stabilise at present! Our time is precious, we encourage our children and grand children to visit and share time with their Pop whenever they choose. We try to live each day with masses of love, hopefully dignity and a little humour!!!! We have both become very teary, sharing special times and memories together. The rollercoaster of emotions is exhausting, and I’m wondering how others cope with these. Peoples comments are amazing, sometimes totally inappropriate and hurtful. I try not to take them on board and remember to live each day to the best of my ability with music, love, good food and a glass of wine. God bless you all for the blogs I’ve read, they are beautiful, full of honestly, love and the capacity for hope. My love, Annie Heard.