One day you wake up and stretch, feeling alive and healthy. Then you go to a routine doctor’s appointment and everything changes. You have a very serious health condition, one that is going to change your life and potentially even end it far earlier than you had ever imagined.
In my case, it was a genetic form of colorectal cancer, found during a screening seven years ago. Today, I’m still being treated, because that’s the nature of familial adenomatous polyposis (FAP). Through writing about my own experiences, I raise awareness of this condition. And I’ve also tried to convey that whatever my struggles, I’ve worked hard to make this disease just something I have, not who I am.
Getting to this point took a lot of work. I got great advice along the way and picked up plenty of my own wisdom. I hope my tried and true steps to healing can help others who face a devastating diagnosis.
- Feel your feelings. My first reaction was denial. Then tears, which for me are cathartic. Only then could I move on to the important work of saving myself.
- Be disciplined about information. My wise oncologist urged me not to get sucked into the internet, which can be a rabbit hole of misinformation. I was given some reputable medical websites to visit, which were very helpful. You have enough to deal with without wallowing in internet horror stories.
- Follow your rituals. I love being a mother — it has been my most fulfilling job — so I decided to focus on rituals of motherhood. I’m proud to say my girls never bought a school lunch — well, except on Taco Tuesdays. After my diagnosis, I still got up almost every morning and organized the lunch assembly line, complete with something homemade. When I was just too tired, I let my girls step up and discover for themselves how satisfying it is to make sure people you love are well-fed. Walking my dog Charlie was also essential to my healing. Some days I dragged and I couldn’t handle the winter walks, but whenever I could get out there with him, the exercise and fresh air were amazing mental boosts.
- Let others help you. A good support system is crucial to surviving cancer treatment. But it is important that you give careful consideration as to whom you let into this very emotional part of your life. You want the friends who will stick with you for the long haul. Cancer doesn’t just stop; for some, it has lingering syndromes that are often more difficult to overcome than the original diagnosis. You’ll get calls from people who want to swoosh in like a guardian angel — and disappear as quickly. They mean well, but they aren’t going to be your bedrock. For me, the most valuable help came from the dear friend who organized dinner delivery for my family three days a week. Weekends, my husband and girls cooked. Another dear friend and fellow dog-lover took over Charlie’s winter walks when the effects of chemo made cold weather too painful for me — and she baked us the best chocolate-chip cookies.
- Connect with your medical providers. Sometimes after a treatment, I leave the hospital and I feel triumphant, as if I conquered a huge challenge. Which I did — I showed up, I conquered that treatment, and I left on my own two feet. I feel that way because of the supportive attitude of all the medical professionals I encounter. This is a long-term relationship, and I look forward to seeing, for instance, the brilliant professional who is among the best medically and makes me laugh, too. Same goes for in-home care. Keep track of the nurses whose skills and personality fit you. The visiting nurse sees me on my worst days and shares in my most happy days, too. She is part of the family.
- Join a support group. Chronic disease can feel like a lonely journey. Friends can listen but not really understand what you’re going through. Being with people who have shared your experiences can be a relief, if you find the right group. Two caveats: If you’re like me, you want to be around people who are generally pretty positive. And if you prefer in-person to online groups, pick one nearby, or it’s too easy to skip.
- Be prepared. Pay attention to what would make you comfortable and be sure to have the supplies you need. I always keep mints in my treatment bag because I can’t stand the taste I get in my mouth when saline flushes through my port before a chemo infusion. I have found Aquaphor is the best way to keep lips and hands from cracking during treatment. You might want a book, a magazine, a movie downloaded on your tablet, some soothing music — and I always keep a notebook and pen with me (more on that next). The best “supply” doesn’t fit in the bag — bringing along a friend can make hours-long treatment sessions fly.
- Never forget that you are in charge. You may feel as if your body has betrayed you, but you are always your own best advocate. Remember that notebook in my supply list? That’s where I write down any questions I come up with, record my food and exercise and how my body reacts, jot down all my thoughts and concerns. No matter how caring our medical practitioners are, they can always use our specific observations and feedback. Taking every step you can in your care benefits everyone involved in your treatment.