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+
3 comments:
Beautifully said. Thank yoU!
Yes! We are continually reframing hope.
Hi Tori! I noticed your blog and I greatly appreciate the stories you are willing to share with others. My name is Abby and I’m currently a student at Calvin College in Grand Rapids, MI working on a project called CancerEd. My team and I are developing curriculum materials to teach children about cancer in an interactive but scientifically accurate way. We are looking to send out a survey to parents who have had cancer to better understand how they communicate with their children about cancer and we would love your help with this! If you could email me at ans29@students.calvin.edu, I would love to give you more information about the survey and about our project. Hope to hear from you soon! Thanks!
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