This is an open letter to anyone faced with a recent diagnosis of cancer or any other serious ailment. I’m publishing it because now two close friends of mine (who, like me, are in their 30’s and otherwise healthy) inexplicably have joined me in the cancer club in the last couple months. Here’s hoping it’s an anomaly and not a trend.
To my dear friends:
Welcome to the club nobody wants to join.
Welcome to the club nobody wants to join.
Please try to remember that you are a statistic of ONE. And there is *always* room for hope. I think I’m living proof of that fact.
In general, try your best to follow Chuck Pagano’s advice and live in your VISION [of long-term happiness] instead of in [short-term, uncertain] CIRCUMSTANCE.
If you’ve just gotten bad news and aren’t sure what to DO, based on my experiences I heartily recommend these specific actions and approaches:
Change your whole family’s diet to eliminate refined sugars and minimize animal products. Eating raw vegan foods is so much tastier (and easier to switch to) than I’d ever have imagined if not for my dear friend / adopted sister Sarah (an incredible vegan gluten-free chef) who flew East and overhauled our kitchen and our eating habits in a single delightful weekend. (Tangent: Sarah can’t do gluten, and I can’t do sugar, but avoiding both is probably healthiest of all.) Shawna and I can help with recipes and prepared meals to show you how. Amazing restaurants like LifeAlive are inspiring too. I hope you’ll believe me (as a life-long omnivore and bacon-wrapped steak eater) this is feasible and worthwhile and simply a change rather than a loss. Go a week without red meat or dairy and you won’t even miss them. There is a lot of awful pseudo-scientific nutrition “science” writing out there, and I’m as harsh a critic and skeptic as you’ll find — but there really is a strong correlation — and near-certain causal relationship — between diet and health outcomes. PLEASE watch “Forks Over Knives” if you haven’t seen it yet, and act accordingly.
2. STATUS UPDATES
Create a page on caringbridge.org to keep everyone in the loop on your health status without getting overwhelmed with emails, phone calls, texts, FB and twitter messages, etc. Repeating the same story over and over is exhausting and a waste of energy you need to conserve for your health battle. Having a single, central place to post updates if/when you feel like doing so is, IMHO, the only sane way to go about it. Also, be BLUNT with friends and family about what is and isn’t ok. For example, tell people “DO NOT COME TO THE HOUSE, NO VISITORS, PERIOD” if that’s how you feel. Many people behave very oddly in response to these diagnoses (near-strangers letting themselves into your home to drop off things they imagine you’d want), and I’ve found that people are almost never actually helpful unless told precisely what to do. “PLEASE BRING A VEGAN MEAL” or “PLEASE WATCH THE GIRLS ON TUESDAY FROM NOON TO FIVE” or whatever, is what works. Don’t be shy about ASKING, and don’t be shy about REFUSING, whatever works for you. [And to anyone reading this who is a friend, rather than the diagnosed person, please, in the name of all that’s holy, do NOT emote in front of the patient. Deal with your emotions and reactions in private, on your own time. Crying and openly suffering in their presence is is ONLY a burden to the diagnosed person, and is possibly the worst thing you could do. If someone is literally on their deathbed, moments from passing away, of course that is different, but in any other circumstances, your JOB is to be positive and friendly and hopeful. Please. Thank you.
Create an account on patientslikeme.com to track how you’re feeling each day and to connect with others in our larger cancer community — which, cheesy as it sounds, really is like a big family. All the BS gets stripped away and it’s good people helping each other. You can almost certainly find someone in your age range with the same condition (even if it’s rare; I even found several other GBMO patients my age). And adding your granular data points in this distributed way gives medical researchers incredibly deep “big data” insights into how treatment and diet etc impact outcomes. It’s a way to pitch in, in a small way, to the fight for a permanent cure. Please do it if you’re able.
Try daily non-religious zen meditation, in which you simply sit in a chair, eyes closed, silently counting your breaths (from 1-10 and back down to 1 again, over and over) with a timer (10-30 minutes, shorter at first) to let you know when to stop. Let your thoughts and feelings be what they are, but try to observe them instead of inhabiting them. When possible, be aware of your thoughts, and let them come and go on their own — almost like a bubble that just floats off in the breeze. If you get lost in a thought, just smile and restart the count. You can customize the count to your taste. (Personally I count from 0 to 10 without repeating the 0 or the 10: 0,1,2,3,4,5,6,7,8,9,10,9,8,7,6,5,4,3,2,1,0,1….) The counting gives you a place to come back to. Gaining even a tiny bit of distance from your thoughts provides surprising benefits like clarity of thought, calmness, focus, increased attention, short-term memory improvement, etc., and can help you understand your own mind and thought patterns. Distance => perspective => insight. And a quiet mind is generally a happy one. Try it! I’ll sit with you anytime!
Andy Puddicombe* gives a great 10-minute intro to zen meditation in this TED talk:
*His book Get Some Headspace is great too.
5. MEDICAL TREATMENT
Document everything (esp. conversations w/ doctors), e.g. using an app like “Evernote” on a smartphone, and do *exactly* what they say.
6. FINANCIAL DOCS
Keep every bill and “EOB” (explanation of benefits”) doc that arrives. Don’t pay each bill as it arrives, as often there’s miscommunication across all the entities involved (they always err on the side of over-billing or double-billing), and you have at least a month or two before any penalty or action could conceivably be triggered.
Writing was really cathartic for me. Some I published, some is private, but it all helps, for me. Letters to friends, philosophical ramblings, private diary entries… whatever works for you. But err on the side of getting it down on paper or Evernote or whatever tool is handy. If you’re a musician, PLAY! And record what you’re doing.
Read “How to Want What You Have” by Timothy Miller. (I will gladly send a copy to any friend or family member who asks, on my dime.) This is the single most important book I have ever read. It helped me to put my life in perspective and to start to become my best self. Freeing yourself from endlessly wanting More, and learning instead to want and appreciate the things you already have, and to practice Compassion, Attention and Gratitude, is some seriously powerful medicine for you and those around you. Please make time to read it as a favor to me.
Above all, stay alive. Whatever the circumstance, whatever the pain and discomfort, anything is possible if you just hang on and keep alive. The pace of innovation and understanding in medical science is accelerating, and “incurable” diseases have been eradicated. HIV patients now live about as long as never-infected people. Resurrection, reincarnation and afterlife are not your best bets, compared to staying alive and being grateful for what you have in the here and now. Just keep breathing, and hang on. Positive change is coming.
Ah, my dear friends, I feel for you so much. But everything will be ok. One moment at a time. Grateful for being alive, for this breath, right now, in the always-precious present moment.
With love and solidarity,