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May 8, 2019 10:33PM
May 8, 2019 10:36PM
LuvMyFam - I came on this board looking for that exact conversation! Thank you for asking the question about how we tell our kids.
My answer turned out so much longer than I meant, but it was therapeutic to write, so I'm leaving it.
I told my 15 year old stepdaughter the news when everyone (doctors included) assumed I would be stage III. It would have been hard to hide from her that I had cancer, and she immediately asked me about the stage. We told her that there was a very small chance that it would be stage IV based on the bone scan, but that the doctors had assured us that was unlikely. She found out I was stage IV in the worst way. I was in the hospital with a chemo port complication when I got my bone scan results. My husband called his mother who took the call sitting right next to my stepdaughter. She overheard everything, including my husband's incredible distress. I found out she knew because I got a text from her that simply said, "I love you." It was the first time she ever said those words to me, even though we have a great and loving relationship. I've been there for half of her life. We found out from my mother-in-law that she was angry because she felt like we'd been hiding how serious it was from her. But the truth is that my whole medical team is shocked. All other indicators (markers in my blood, my CT scan, lack of any physical symptoms/pains) suggested the bone scan was simply a formality. Up until that scan, everyone told me I would probably live a full and normal life after chemo and surgery, growing old as planned. My husband sat my stepdaughter down that night and had another conversation with her about it. I've told her that I likely have many years, that medical improvements are happening all of the time, and that my biggest motivation to fight to stay alive is being there for her. She seems to be handling it okay, but we really don't know. My husband thinks he has heard her crying in her room a few times. I think we need to keep talking with her about it, but it is hard when we're both struggling so much emotionally with the news.
My mother was diagnosed with a fatal disease (an autoimmune disease) shortly after my birth. She was given 6 years to live and made it twelve years. Yesterday was the 27th anniversary of her death. My family never hid from me that she had a fatal disease and that we didn't know how long she had left. I remember always knowing, even as a really little kid. I think it helped me cope.
And for those of you with young kids -- I turned out fine. I love my mother very much. I wear her wedding ring as my wedding ring. I have never doubted the strength of her love for me and knew without a doubt that her love for me and my sister why was she fought so hard. She is with me in my heart and spirit every day.
Dx 3/27/2019, IDC, Right, 12mm, Stage III, Grade 1, ER+/PR+,HER2-
4/26/2019, IDC, Right, Stage IV, metastasized to bone, Grade 1, ER+/PR+, HER2-