How I'm doing: Feeling good, but weird after Survivors' Day words

Here's what I wrote for my cancer centers' Cancer Survivor's Day at Wrigley Field this past weekend. I feel weird about it. I say that I'm going to be a patient advocate, but I'm not sure I want to talk about this stuff. I have time to figure it out. Sorry for the weird formatting.

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• What foods should I eat to prepare for chemotherapy? 

• How much should I cut back on my workout during cancer treatment? 

• Who’s a personal trainer who works with cancer patients in Chicago? 

• Can I still get that ephemeral tattoo I’ve been planning?

• I heard when you said “no supplements” during this part of treatment, but what about a probiotic, or the inner part of an aloe plant? 

• Hey, after radiation ends, Is it OK if I fly about 2 weeks later? Can I go on a jet ski then?

I thought I'd introduce myself by sharing some of the questions I searched the internet for and asked my care team since my Stage I breast cancer diagnosis last fall.

And trust me, almost no department has been left behind. This one goes out to you, members of the oncology, infusion, surgical, radiation oncology, pharmacy, food and nutrition, cardiology, social work, and physical therapy departments, plus my breast navigator (hi Brittany) and acupuncturist and therapist. 

When I asked one of my questions to the care team members here, I always got an answer. If they didn’t have one immediately, they got back to me after doing some research. And I’m forever grateful. 

I can say that all my questions–even the obnoxious ones that probably seemed inappropriate for the moment–served me well. Because for all intents and purposes, I kinda crushed it. 

I’m coming out of this a better version of myself: I’m stronger, I’m happier. I stand up for myself better. I’m more decisive and ruthless in considering where I give my energy, and where I get it. 

I’m in charge of my body. I’m committed to making choices everyday to help me—not only for my continuing recovery, but so I can roll into any future diagnosis, whatever it may be, with a healthy wellness foundation. I came into it that way, and I know first-hand, my healthy choices pay off.   

So, I know that everyone’s cancer is different, every physical body is different, so the details of what we might each need are probably different too. But I do have a playbook of sorts, which my questions allude to, and think I can summarize it this way: 

1. I gathered my people (and my dog), and set the tone for how I wanted this to go. 

2. I accepted help. 

3. I strategically manage my energy.

4. I see food as fuel now.

5. I’m committed to movement every day, even if it has to be for 10 minutes on my worst days. 

6. I lean into my feelings when they come up. And work that stuff out. 

7. I get spiritual. I talk to my dad and my relatives who passed after their own battles with cancer.  

8. I don’t worship my worries and fears.  

9. Every day, I tell myself: Keep going. You’ve got this. 

And now that I’m through the worst parts of treatment, I’ve been thinking about how I might give back. And I think I’ve found my answer. 

You know all those questions? When I ask the care team here for advice, I got answers but also felt seen and understood.  

During my internet searches, however – and I’m flashing back to the scariest time in this whole process, which for me, was the first 2 months – I quickly realized that the cancer resources that the industry – major organizations and hospital systems– have published are not for people like me. I can’t relate to them.

See, I’m proactive in my approach to life. I want to know what I can do to set myself up for success. I’m also a problem solver. I’m athletic. I’m younger, but not young–which means I’ve spent a good portion of my life empowered with the internet at my fingertips. 

So here’s what frustrated me about those internet searches: 

When I searched for, “foods to prepare for chemotherapy” the results told me what to eat if I have nausea or vomiting as a side effect. That’s reactive, it’s not proactive. Tell me about vegetables to help my gut bacteria. Tell me about anti-inflammatory foods, and foods and spices that lower risk.  

When I searched for, “advice on how to work during cancer treatment” today’s information encourages someone to exercise, which is great, but it suggests starting by walking. I had biked 50 miles in one ride the week before my diagnosis, don’t tell me to start with a walk, or, say that even people who are already working out need to start with a walk. 

When I searched for a personal trainer or coach who specializes in oncology, I encountered literally no search results, when in actuality, there could be information guiding me to work with an exercise oncologist, which we have here, btw. 

So today I’m putting it into the universe that I hope to become a patient advocate who can help the healthcare industry understand this information gap. I’m asking them to reframe and update their guidance to be proactive as well, and speak to people who already have a wellness foundation in their life. 

Do I need to sit on a panel and tell my story? I can do that. Do you need a content plan with quick wins as well as a new narrative? I’ve got you. I actually do this kinda storytelling and customer experience design for Google and I’ve helped other major brands do this too, so I’m hoping the healthcare industry just accepts the free advice. Anyone at Advocate who hears this and has ideas on how to get started, let’s do it.  

Until then, I’m going to keep asking my obnoxious questions, and refining my playbook for dealing with cancer–which is actually my updated playbook for life. 

And then we gotta work on those darn search results. It’s for the people who come after us. 

Thank you. 

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