Some days I look back on the past nine months in awe and disbelief of everything Janelle and I have gone through. In many ways, it's started to feel like a dream - a horrible nightmare. I can't possibly be a cancer survivor at the age of 27. But I am and I'm dreaming about the day my curls will come back.
Future thoughts and worries about starting a family, living until I'm old and gray, and finding peace along the way have taken up residence in my mind lately. More thoughts than worries. Living with cancer is complicated and disorienting for my brain that loves structure and order. I'm a survivor but not cured. I have a chronic condition but look healthy. I often feel great but other times I have to slow down. Usually I'm at peace but can also feel terrified for no reason.
Last month, Janelle and I attended a Young Adult Cancer Conference at Dana-Farber. It was not the most uplifting way to spend our weekend but gave us the chance to reflect on this journey with other young adults that are experiencing or have experienced similar challenges. We attended a session about dealing with hard comments, questions, or conversations about cancer with the strangers, friends, family, and acquaintances in our lives. It was a very helpful time for Janelle and I to reflect on the ways people have been helpful and hurtful in this experience. I'd love to recap some of our reflections here because people often ask me the best ways to talk about or ask about my cancer.
Things that are not helpful:
1. Please don't compare your tiredness or any symptoms of your pregnancy or being a parent to young children with the side effects of my cancer treatment. You had the amazing ability to choose to be a parent and raise children. I did not choose to get cancer and endure six months of chemo. My journey doesn't come with joyous memories, sticky fingers, and family time. It comes with scary prognoses and painful reality checks. I am not trying to minimalize your tiredness or stress because they are just as real as mine but right now, I'm not ready to listen to you talk about them.
2. Unless you're quickly complimenting my hair, please don't comment on it. It's just another daily reminder to me of the curls that I have lost and may not get back. My hair is growing on me but it's taken deliberate practice to slowly accept it.
3. Please don't tell me about someone else you knew who had cancer, especially if they died. It's just not helpful. Unless you want to connect me with this person because they may be a helpful mentor, please don't bring them up. I may be ready to hear about it at some other time, but not right now.
4. Please don't tell me about alternative therapies that I should've tried instead of chemo. Please don't tell me that I put poison in my body. Please understand that my doctor helped me make the choice to have intense chemo because the whole lymphoma team at Dana-Farber believed it had the best chance to put me in remission and extend my life.
5. Please don't tell me that you've heard chemo is not too bad nowadays. It's bad.
6. Also, don't tell me that you've heard my cancer is curable and is the good kind to get. It's not and no cancer is the good kind. Also, I have an oncologist to tell me everything I need to know.
* If you feel like you may have said something hurtful to me, please don't feel bad. I forgive you. We are all making mistakes. I am too. I'm posting these here because I now know what kinds of statements hurt me. I didn't know until I experienced them. Every cancer patient feels differently and probably has a different list of hurtful things.
Things that are helpful:
1. I am open to talking about how I'm feeling and coping. These last nine months have helped me embrace life and see myself in different ways. I'm more present and grateful for all that I have more now than I ever have been. If I'm not up for talking at that specific moment in time, I will just let you know.
2. Reach out. However, don't ever feel guilty for not reaching out enough or in the "best way" because those things aren't even possible. Every time someone reaches out to me to check-in, chat, send a funny picture, or ask a question, I feel loved. There is no right way to be a friend, colleague, or relative to me as a cancer survivor. There are only relationships that are growing and evolving as we all navigate this experience together. Some people wore bird socks. Great. Others sent letters. Awesome. Some people ran a race in my honor, sent me books, left funny voice mails, gave me hugs etc. I'm grateful and moved by all of it. Because each of you is being you. Don't change that because you think this circumstance calls for something different. It doesn't. It just asks that you and I acknowledge it together and wade through it.
3. Reminders that I'm not alone are helpful. Isolation has been one of the most terrifying feelings. Knowing I can reach out and find support is always helpful.
Every day, I see and feel love, support, beauty, and joy coming at me from so many people and places. We are blessed to live in such a beautiful world. Thank you for shining.
