So Now What?

My beautiful Erin

So I've finished chemo and radiation. Recovered from the exhaustion and horrible burns and my hair has nicely grown back. I had my first post treatment mammogram and it was all clear. Damn, it had better be after everything they threw at me! I started on estrogen suppression therapy which will continue for at least five years. I am a cancer survivor. Now what?

Cancer  changed me in so many ways. I find myself talking to people in a different way than I did in my pre-cancerous life. I smile at strangers. I listen more carefully. I notice things more acutely. I have let go of things that distract me from what is most important to me. I have narrowed my focus. I set three goals for myself - to finish restoring my house, finish my novel, and become a better knitter. All attainable, I think. I am going on with my life cancer free, and am going to assume that it will not return.

But, my daughter does not have that luxury.

A week ago we called 911 when Erin coughed up blood and could not catch her breath. When EMS arrived her oxygenation level was at 45%. In the emergency room Erin was asked if she wanted to be put on a ventilator if necessary. It became necessary and in the hope that whatever was going on could be resolved she consented to the ventilator. She was transferred to the critical care unit. She had probable bleeding in her right lung, possible infection and the sarcoma had metastasized to her abdomen. On Monday we had a very difficult conversation with one of the doctors, making some difficult decisions. End of life decisions. Decisions that you never want to see your child have to make.

Erin has been so incredibly resilient through her diagnosis and treatments. She was worn out, and the end was near. She said she wanted to be able to go home with hospice care. She did not want her four year old to remember her with tubes running everywhere. If she could not get off the ventilator she would not be able to go home. She let us know that if that was the case she wanted the doctors to keep her comfortable and let nature take it's course. On Wednesday morning it was obvious that she would not be going home. Erin wrote on her sister's iPad "I'm done."

We brought her children in to see her. Erin was that strong, loving mom right to the end. She wrote "I will always be with you" "You can always talk to me" "It's okay." She signed "I love you." When I asked her if she was ready she nodded her head. The nurse began to sedate her. The ventilator settings were slowly lowered until she was not being supported in her breathing. She rested peacefully all afternoon. When her brother arrived from the airport she opened her eyes, looked at him and signed "I love you." Her last words. I held her hand as she took her last breath near midnight.

My heart is broken, battered, and filled with love for her and all of those who continue to support us. I wonder if I will be able to adequately help her children to deal with this. I can't imagine my life with out her yet I am forced to imagine it.

So I have survived my own cancer, but how do I survive hers?

Here we are back at the U. We called 911 two days ago when Erin coughed up blood and could not catch her breath. When EMS arrived her oxygenation level was at 45%. In the emergency room Erin was asked if she wanted to be put on a ventilator if necessary. It became necessary and in the hope that whatever was going on could be resolved she consented to the ventilator. She was transferred to the critical care unit. She has probable bleeding in her right lung, possible infection and the sarcoma has metastasized to her abdomen. Yesterday we had a very difficult conversation with one of the doctors, making some difficult decisions. End of life decisions. Decisions that you never want to see your child have to make. Erin has been so incredibly resilient through her diagnosiAs and treatments. She is worn out, and the end is near. Her goal now is to be able to go home with hospice care. She does not want her four year old to remember her with tubes running everywhere. If she cannot get off the ventilator she will not be able to go home. She let us know that if that is the case she wants the doctors to keep her comfortable and let nature take it's course.Cancer  changed me in so many ways. I find myself talking to people in a different way than I did in my pre-cancerous life. I smile at strangers. I listen more carefully. I notice things more acutely. I have let go of things that distract me from what is most important to me. I have narrowed my focus. I set three goals for myself - to finish restoring my house, finish my novel, and become a better knitter. All attainable, I think. I am going on with my life cancer free, and am going to assume that it will not return. But, my daughter does not have that luxury.
So I have survived my own cancer, but how do I survive hers?
My heart is broken, battered, and filled with love for her and all of those who continue to support us. I wonder if I will be able to adequately help her children to deal with this. I can't imagine my life with out her yet I am forced to imagine it.