Parenting and MBC, Part II, a Guest Post

I asked my dear friend, Amanda Raffenaud, a mom also living with Stage IV Metastatic Breast Cancer to help me with this series since she has older boys and her experience in parenting while dealing with a serious illness has been different from mine.

On December 18, 2018, I was diagnosed with stage 4 metastatic breast cancer, de novo—or stage 4, “from the start.” This means I did not have an earlier stage diagnosis and did not have the experience of equipping myself or my family with any breast cancer knowledge until I was already stage 4. 

I will never forget the shock of this diagnosis and the shock of knowing that the only breast cancer stage I would ever experience was stage 4; it was the worst stage and I was already there. And just as soon as this shock entered my brain, another round of shock entered—how will I tell my sons? At the time, they were 12 and 17 years old—old enough to understand a whole lot, but I’d imagine no age ever seems old enough to hold the proverbial bomb you are about to place in their hands. I honestly don’t know that there is any easy age to receive this diagnosis as a parent or any easy age to have a parent communicate this news to their children. Having kids—young or old, babies, pre-schoolers, teenagers, or even adult children—learning to communicate this diagnosis and what comes next during treatment is never easy. 

I communicated by myself

Just two years prior to this diagnosis, I lost my husband—and my sons lost their father. The two years after this loss in 2016 and 2017, we entered into grief in a real and raw way. My heart broke knowing they would experience grief, yet again, and there was nothing I could do to soften the blow for my boys. And, my communication with them—about this diagnosis—would not be “held” by another supportive parent. It was just me. I was both the cancer-haver AND the parent who held their grief. I was both the patient AND the parent who told them I would be with them and for them no matter what happened. And yes, we had an army of support around us, namely from the loss and grief we experienced two years prior, but this new grief and diagnosis felt important to communicate directly to my boys without others there lifting me up. I wanted to show my boys that even though I was the patient, we—the 3 of us, our little family- would be “okay.” Some people will chose to communicate the news of a diagnosis with others standing by, while others, like myself, will chose to do it alone and take the special time with those (in this case, my sons) who are receiving the news. 

I told my boys separately  

Also specific to my situation, I chose to tell my boys the news of this diagnosis to each son, privately. Although much of our life and discussion is shared, I knew this news would elicit questions and responses specific to each of their personalities. And I didn’t want one son’s reaction to dictate or influence the other son’s. My boys are 5 years apart and also built very differently with regard to personality and how they see the world. Taking this into consideration meant it might be most meaningful and most personal to share this news individually. And I’m glad I did. And Abigail’s questions from part one— Am I safe? Am I loved? And what can I learn? —were very much at the center of our conversations. This was good and right. And given their ages- 12 & 17- and their differences in personality, talking to them individually proved the right path. One asked questions about treatment and what would happen to my hair, while the other asked questions about what would happen if I was “too sick” from chemo to be their parent one day? One asked questions about logistics while another cried and cried, recounting how this wasn’t at all fair. One asked if he could talk to my doctor about novel therapies, trusting my doctor already, and the other asked if I’d done my research to find the best doctor because that is who we’d need. I was glad I honored my intuition and told my boys separately. Their unique reactions were held and honored and I was able to address questions that mattered to them, uniquely.

What communications looks like today

And now, 3.5 years into this diagnosis, with many ups and downs thus far, I’ve watched my sons celebrate many birthdays. They are now 16 and 21. We continue to communicate so much about this diagnosis and what it means for us and what it means for them. Some of these conversations continue to be one-on-one while others are collective and held with the “family” at the heart. There have been tears and there have been healthy outlets for anger (I.e. the “Rage room”—look up if one is available in your city). I’ve bought both boys grief books to utilize when or if they want—books with prompts to elicit responses unique to them, only to be seen by them. They’ve also each been through seasons of counseling, sometimes individually and sometimes me joining in their session. As time goes by, communication needs may change. I often check-in with my boys and ask them if they still want to know the details of my care (they said they always wanted to know, but I acknowledge that even that can change too). There is no “right way” to do this and we are all just stumbling forward. But it’s okay, we can stumble forward together, and they know for as long as I here, I’ll always be their mom first, patient second. And our communication needs may change down the road, and that is okay, as we will work to support one another with their needs as my son taking a strong priority. 

The bottom line

Aside from some minor things, there really isn’t a right or wrong way through the process of communicating with your teenagers about a stage four MBC diagnosis. No one has written the “how-to” manual and I think we are all finding our way through. Through the grief and pain, but also celebration and triumph, it’s just important to keep having the conversations with one another. No question is ever too small—or big—or dumb—or weird. Ask away, my dear sons. And if I don’t know the answer, we will figure it out together. 

Stay turned for part III of this Parenting series! You can access Part I, here.