This week, I was interviewed for a podcast coming out in the future about finding happiness and having perspective when dealing with the tough stuff (the podcast is from an org called NETRF, the Neuroendocrine Tumors Research Foundation).
They asked me what advice would I give to someone going through a difficult time and who has been recently diagnosed.
People who have read other articles by me know that I am very focused on the two halves of dealing with cancer, the treatment AND the experience side. The treatment side gets all of the hype, but I would argue the experience side is more important to deal with at least for your mental health (which I believe is critical to how you feel).
The first answer most people would give is to find a specialist (obviously offering ways to find one). Find a Dr. who understands the specifics of the illness and can guide you on treatments.
But of course, I am not like most people. I liked the question a lot and reflected on what I thought would help others. For me, the treatment is secondary, who you want to be when dealing with difficult stuff is primary. I choose to focus on the experience side, what it's like to live with cancer (regardless of the type. This post is also relevant to anyone going through something difficult, not just cancer).
I recommend doing the work on yourself and figuring out how your life is going to change and who you want to be. What do you want your experience to be like?
For example, do you want to be private or public? How do you tell people? What responses do you want from those you do tell? What relationships are you going to focus on and what do you want them to be like? Do you want to rekindle lost relationships? Do you have people who can help take care of you, and how can you be the best care receiver out there (I am not good at it!)? Can you work and do you want to? Are you too sick to do the things you want to or is this an opportunity to go do all of the things you have always wanted to? Financial and legal concerns are in there too. What kind of treatments do you want for your overall self in addition to for your cancer?
What isn't there immediately is "what kind of shot am I going to get in my butt?", "can I sign up for clinical trials?" "do I need chemo or radiation?" and other medical treatments.
Until you know who you are, how you get treated isn't as important. First, you need to figure out what is important to you. Figure out your limits, who you are as a person, and how you have to adapt to life and the world given new circumstances. Learn to think about what you need and what your body tells you it needs. I had Drs tell me I needed a specific procedure and I said no because I knew my body couldn't take it. I was able to do that because I was honest with myself and kind of knew myself (I am not very self-aware but I have and am working so hard on becoming more).
So how do you figure out who you are? This is not an easy one. First, get a good therapist. Not the kind who just lets you talk, but the kind who pushes you a bit (at least that's what works for me). A good therapist can be a huge help in how you will deal with a changed life. I have seen three therapists since diagnosis. I like to joke that I took the Goldilocks approach. My first therapist was too hard, my second therapist was too soft, and I think my third one is just right. My current therapist listens but also questions and pushes a bit. That's what I need. I learn more about myself in almost every session.
Other things you can focus on that can help. Write in a journal or blog. It's helped me process so much about what my experience is like (and only a tiny fraction about treatments). Talk to other people who have your energy and seem aligned with the way you want to be, don't just find people who talk treatment. Meditation is a big help as are things like yoga. They all help you focus on yourself and help you look inward.
So I don't know if this is going to help anyone, but I thought the concept of figuring yourself out first could help people think differently. If I am wrong, thanks for reading anyway.
Quick updates on me
I am still stable, my next scans are on 10/15
My symptoms are basically the same. My fatigue is slightly worse and I have some other random stuff but I can still do most things that I want to
I have a big job interview on 10/2, wish me luck!
I have still been volunteering a lot for the Society for Integrative Oncology (big conference in Irvine CA in October (if you are interested let me know!) that I am excited about) and also for a Democratic candidate running for congress in D22 in Texas (random, right? but fun!)
I am super excited for next week. Headed to NYC with Krista for Mom's big birthday. She is an amazing inspiration to me and I am excited to celebrate her for a weekend with the family (all the kids will be there too)
Krista and I also have an appointment with a NETs specialist at Memorial Sloan Kettering (MSK) in NYC to get some new thinking on my case and treatment. It will either give us some new ideas or validate what we are already doing. I am a big fan of the work that they do at MSK and they have a great IO practice too that I am hoping I can get into
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