Well, here is the first-ever blog post by my lovely wife. Although I always make it sound as if this is a joint project, the fact is she’s never contributed a single word until now. I wish it were on a more enjoyable and encouraging topic. Anyway, I’ll let her get to it.
Tears are not an uncommon sight in the oncology ward. Less a regular fixture than the odd bad wig or non-elderly person, but certainly never a surprising sight. On Friday, I had a mini-breakdown at the hospital while listening to a podcast about a woman with incurable cancer, but the tears of sadness and despair were mixed with tears of hope and joy.
It is never nice to be the bearer of bad news. Especially when we are bombarded by bad news all the time: school shootings, climate change, the resurgence of white nationalism, war crimes, killer storms, the list goes on and on. So I will deliver my bad news cloaked in some advice for how to do something that can help.
As many of you know, the colon cancer I was diagnosed with three years ago in March 2015 metastasized to my liver last year. I was fortunate enough to be a candidate for a radical new surgical procedure that I and my doctors hoped could be a cure. The surgery took more than 8 hours and involved removing the tumors in my liver and colon, as well as my ovaries, uterus, appendix, and gallbladder, then filling my whole abdominal cavity like a bathtub with superheated chemo drugs to try to kill any remaining cancer cells.
I had a 12-day hospital stay followed by four months of clean-up chemo that ended in November. I went back to work hoping that I would eventually be able to experience the bliss of taking things for granted again. No such luck. The CAT scan I had after the last chemo round showed new growths in my lungs and around the scar tissue from the last surgery. I got the news on December 23. Merry F@#king Christmas.
So, I am back in chemo and will find out how this cancer is responding to the new batch of toxins I am getting in the next few weeks. What I can tell you about my diagnosis and prognosis is that the doctors consider it a chronic condition at this stage, or in other words, incurable. The statistical likelihood that I will survive for more than five years is around 10 percent. I hate statistics and have always been in the top tenth percentile in almost everything I’ve done in life, so I have to believe I will beat the odds. But I am scared. My boys just celebrated their 8th and 12th birthdays, so in 5 years, they will be 13 and 17.
I can’t tell you how many people I have had to console about my cancer. Trying to make them feel better about my condition and prognosis and positive state of mind has been generally exhausting and frustrating. Don’t get me wrong. I have been incredibly moved to learn just how upset people have been about my cancer. I don’t want people to hide that from me or feel that they can’t express their grief and sorrow with me. All I ask is that you pause to think whether what you want to say or hear is more to make you feel better or to make me feel better.
Now here is the advice part. When confronted with bad news that leaves you at a loss for how to respond, there are loads of resources that I have found and can recommend. But everyone is different and something that one person finds dispiriting might give real comfort to another. So I can only speak for myself in offering some do’s and don’ts and suggestions for how to offer support and help in ways that have given me strength rather than sapping it.
DO: Listen and ask questions – I am a very open person and extremely difficult to offend. I hate that there is still any taboo or stigma around cancer, that it is still hard for some people to utter the word, and when they say it, to do so in hushed tones. I am happy to talk about cancer, my own cancer and treatment and the incredibly fascinating subject of cancer in general. But if you are squeamish and not all that interested in hearing how I am really doing or my thoughts on how cancer is the perfect metaphor for so many of the ills in the world today, talk to me about whatever we talked about before I got cancer. I still love books, movies, food, travel, kids, and everything I loved before cancer.
DO: Send emails, text messages, postcards, anything at all to let me know you care or are thinking about me. This brings out my inner narcissist who has been buried for most of my life under the Asian protestant female compulsion to never draw attention to oneself. I have found enormous strength in the messages I have gotten from people from all phases and places in my life. It allows me to feel grateful for all of the wonderful people I have in my corner and never gets old.
DO: Step in to help when help seems necessary or useful. It’s great when people say If there’s anything I can do…, but it’s more useful when they say Hey, let me take the boys this Friday night so you guys can go out. Asking for help is often difficult, and it’s a lot easier accepting specific offers of assistance than calling and asking for a favor.
DON’T: Give advice unless asked – similar to when you have a new baby, cancer brings lots of unsolicited advice. There may be people who really appreciate it, but I have never met anyone who does, whether it is about their kids or cancer. I have had to learn a great deal more than I ever cared to about cancer, and the unfortunate truth is that it is not one disease, but many. There is anecdotal evidence for the efficacy of grape seed extract, ginseng, turmeric, algae, marijuana oil, mistletoe, Reiki, acupuncture, vortex healing, interstellar star juice, etc. I’m happy to try – and am trying – many of them. But whether you are a believer or skeptic in conventional or alternative treatments for cancer, please trust that I am doing what is best for me.
DON’T: Qualify your commiserations with, well, anything. The second line in a letter from my parents’ pastor asked God to “forgive [Susan] for whatever her situation and mistaken past.” I’m not sure what exactly comprises my “mistaken past,” but don’t silently – or otherwise – reproach the lung cancer patient for smoking or the person suffering from stomach cancer for not eating enough broccoli. The best approach is to say, Wow, that’s terrible. I’m really sorry that this shitty thing is happening to you. Then maybe give me a hug. Hugs, kindness, honesty, and love are always welcome and appreciated.
Here are some additional resources that resonated with me on how to show support and empathy in the face of tragedy:
Help Each Other Out – Based on hundreds of interviews, this is the companion site to the book, There is No Good Card for This: What to Say and Do When Life is Scary, Awful and Unfair to People You Love, this is the best compendium I have found on empathy and includes a range of situations, from break-ups to loss.
Secrets of Cancerhood Blog on Advice – This is great advice from the author and subject of the New York Times series, Life Interrupted, Suleika Jaouad.
The Mighty – This is like Upworthy, but an uplifting community for people with health issues and disabilities. This piece from a fellow stage 4 mom of young kids on 5 Things You Should Know When a Loved One Gets Cancer really rings true for me.