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Nov 6, 2019 07:13PM
oh gosh JFL, I feel like I could talk with you for hours. We are in a similar situation with our boys.
Before we get to that...I hope Thor enjoyed trick or treating! We are big Avenger fans in our house too!!
I found out my friend Wendi passed last night in her sleep. I have often felt guilt because my QOL has been so much better than hers. She suffered and she wasn’t able to do the things she wanted to with her son and her husband. She was robbed. Her triple negative cancer was never beaten back. It only grew.
Last week when I was on BCO and I found out Wendi was in home hospice. I was in despair.
I reached out to an organization that night that I had originally kind of written off just because my son doesn’t know about my diagnosis.
This sweet woman wrote me back and asked if she could call me. She called me at 7:30 pm. She was an angel and was just what I needed at that moment.
The organization provides trips to families with a parent facing a terminal diagnosis. I had made up my mind about telling our son at this point in time. I often get annoyed because people who are not in this situation like to tell me how this is the incorrect choice.
Anyway, this woman lost her mom when she was 7. She presented data and facts and opened my eyes and helped me so much.
She said data shows kids do better when they have more time to prepare. She cited a small study that hooked people up to vital monitors and put them in two different rooms. The first room they popped a loud balloon without warning. The second room the warned people that they would pop the balloon and it would be loud. Clearly the people who had advance notice were less stressed.
This is so silly and simple but it made sense to me.
Our son attends Catholic school too. He also doesn’t know what the word cancer means.
I told her my husband had asked me when I was first diagnosed what we would say to our son when he asks us if I’m going to die? I told my husband affirmatively we would tell him NO.
She said that we shouldn’t say that. To say, we don’t know. I’m here now basically and assure them as and if we get new information we would tell him.
She gave me a new perspective and has made this gut wrenching conversation seem less impossible
Currently on first line treatment: Ibrance, Letrozole, Xgeva, Zolodex since 12/22/18 Mets to Lungs and Bones. Originally diagnosed early stage at 31 during the one year postpartum period.
5/30/2013, IDC, Left, 2cm, Stage IIB, Grade 3, 2/12 nodes, ER+/PR+, HER2- (FISH)
6/27/2013 Lymph node removal: Left, Underarm/Axillary; Mastectomy: Left, Right; Reconstruction (left): Tissue expander placement; Reconstruction (right): Tissue expander placement
8/30/2013 Herceptin (trastuzumab)
8/30/2013 Cytoxan (cyclophosphamide), Taxotere (docetaxel)
1/28/2014 Breast, Lymph nodes
3/30/2014 Tamoxifen pills (Nolvadex, Apo-Tamox, Tamofen, Tamone)
6/20/2014 Fareston (toremifene)
12/7/2018, IDC, Stage IV, metastasized to bone/lungs, ER+/PR+, HER2-
12/22/2018 Ibrance (palbociclib)
12/22/2018 Femara (letrozole), Zoladex (goserelin)