Thursday, June 02, 2016

How Much Do You Want To Know About Your Cancer?

I came across this NY Times article, "How Much Do You Want To Know About Your Cancer," and I was moved to comment. Apparently I had more to say than their character limit, so I thought I better blog about it! I'd love to hear other people's perspectives.

The article:

My response:
I am almost *exactly* the patient described in this article, with lung cancer spread throughout my bones and liver. My children, however, were only 4, 2 and 2 when I was diagnosed, and I was acutely ill by the time my doctors finally figured out it wasn't just asthma causing my intense breathing difficulties. This past weekend marked 3 years from that fateful day when I was told that I have cancer. Now, I take a targeted medicine daily to control my metastatic lung cancer. I have been through chemotherapy and brain radiation, but I am able to maintain a pretty good quality of life.

So what should you tell a patient in this situation? We need to know how very serious this is, but that there is always room for hope. We need to know that you, our doctors, will stay by our side and will keep trying to find treatments as long as we are game to keep submitting ourselves to the accompanying side effects. We want you to help us live in the precarious spot of preparing for end of life while simultaneously embracing today. We want you to guide us through the wonderfully daunting landscape of new treatments and clinical trials that are the beacon of hope for those of us living with terminal cancer. We want you to help us reframe what hope means when we run out of treatment options, and we struggle to find meaning in the remaining days.

We want you to bear in mind how absolutely overwhelming this news is. For me, it took several weeks for the fog of shock and despair to lift, before I could even begin to process the enormity of this news. Perhaps the best ways I have heard it told is that "we cannot cure you, but we will do everything we can to try and control the cancer." We need you to revisit this conversation time and time again, as our understanding evolves and our treatment path shifts and changes. 

Tori Tomalia
Stage IV NSCLC, ROS1+

2 comments:

Obsessedwithlife said...

Beautifully said. Thank yoU!

Ms. Veysman's Fearless 5th Grade said...

Yes! We are continually reframing hope.