I’ve been away for a while. And by away, I don’t mean from this space. I mean from life as I knew it.
I’ve been thinking long and hard about how to say this. But sometimes you just have to spit it out: I had cancer. Breast cancer.
Cancer is a diagnosis one in three US women will face in their lifetimes. One in eight will have breast cancer. And yet the shock of hearing it applied to me was as sudden and frightening as you might expect.
My tumor was found by mammography in mid-summer; my surgery and radiation treatment stretched from August through October. I didn’t have chemo, didn’t lose my hair, so I kept my illness hidden as best I could from everyone except a close circle of friends and the people in my office.
Protecting the news of my diagnosis gave me the space and time I needed to work through my illness. Within a few weeks, I came out to a small circle of friends because I knew, with every fiber of my being, they’d be my lifeline to sanity and healing. I came out to my office because one of my colleagues, who is two levels removed from my supervision, was diagnosed with breast cancer a few weeks before me and told her manager she was afraid of losing her job as a result.
I have responsibility for some 50 people in my organization and hearing of her worry broke my heart – even as I understood her inclination. I decided my highest obligation as a senior leader in our organization was to approach my illness with a sense of poise and equanimity – to be a role model for a professional who encounters an unexpected and potentially difficult illness with grace and grit. More importantly, I felt it crucial to demonstrate it’s okay to bring our “less than” selves to work. In an email to our division announcing my illness, I wrote: We are all fully human, and that means we sometimes get sick, have messy lives, and find ourselves in situations that don’t square with the professional personas we work so hard to cultivate. If ever you have worried about bringing your fully human self to work, know that I understand. And that it’s okay to be fully human on our team.
Still, I wasn’t prepared to share my news with every single person in my orbit, including the hundreds who work at my university. And the many uncertainties of cancer combined with the potentially vast reach of social media meant I stayed quiet in that realm, too, even though it limited my support network.
I’ve watched with interest as others I know confront their illnesses online. I knew I’d feel an obligation to respond to all those offering comfort and, frankly, I just didn’t feel up to it. From the moment a nurse called to say my biopsy was positive for Invasive Ductal Carcinoma, I felt overwhelmed. The idea of wading through well-meaning and earnest expressions of support and advice from all quarters felt like it might shatter my ever-fragile composure in ways that wouldn’t serve my healing and recovery, so I mostly kept quiet. I’m okay with my choice, even as I share now. One thing I’ve learned is that every cancer journey is unique and we have to do what feels right for us in a particular space and time. There is no template for dealing with cancer and that’s okay. It’s “normal” to feel your way through it and change your mind a lot.
As a result of my life-altering experience with breast cancer, I have gained new insights – about life, about the bounds of love and friendship, about dealing with a grave illness, about what’s important in this world. I’ve also reflected on and distilled my values and beliefs in ways I couldn’t have imagined without the time-stopping, life-and-death urgency of cancer.
So, here are my “Top 10 Insights,” (with a Bonus!) from the mundane to the existential, for both the ill and those who love them. If you have experience with cancer and have something to add, I’d love to hear from you. Leave me a comment.
For those who care about someone with cancer –
1. Don’t tell cancer stories.
When someone tells you they have cancer, don’t tell them your cancer story, or your aunt’s, or your neighbor’s or anyone else’s for that matter, not even if the person was cured quickly and lived another 50 years, and especially not if the person is near death or has died. Simply say “I’m so sorry to hear that” and then listen.
I know you mean well, but a person with cancer simply can’t absorb in the moment whatever helpful information you think you’re sharing. If you only knew how hard it is to muster up the courage to say the words “I have cancer,” you would understand why a friendly ear and possibly a hug are all we need at that moment.
If you must say something, say “I’m here to listen. Tell me how you are feeling.” And “I love you” or “I treasure you” are always welcome expressions. Feel free to say them often.
If you are convinced you have burning information about cancer that you must share, take a deep breath and wait. If after a week you are still convinced, say “I have some first-hand information you may find helpful. Let me know if and when you’d like me to share it.” And then only share if asked. Trust me when I tell you that to your friend or family member dealing with a cancer diagnosis and treatment, you sound like Charlie Brown’s teacher when you talk. In other words, listen a lot, talk very little. The very last thing we need is one more cancer story or piece of advice.
Finally, thank the person for trusting you with such deeply personal news and ask if you should keep it confidential.
2. Don’t ask how bad it is.
I know from my life before cancer (which I call BC), the first thing a bystander wants to know is “How bad is it?” It’s the first thing that pops into our heads. But, remember: the cancer patient may or may not yet know what stage cancer they have, may or may not know the duration and side effects of their treatment, may or may not have been informed of or understood their prognosis and – most importantly – may or may not have processed the news if they know.
And, besides, what you are really asking is “Are you going to live or are you going to die?”
No matter how much you love the person, you can do without that information for now. Assume they’re going to live until told otherwise and don’t be so presumptuous as to ask the sum of an unknowable calculation.
Trust me, if they know and if they want to talk about it, you’ll hear without asking.
3. Don’t ask, just do.
Don’t say “Let me know if I can help” or even “How can I help?” Just help. You’re an adult. Figure it out and then do it without inundating the individual with questions that require thought and decision making.
Deliver food. Give comfort items. (For women, you can never go wrong with soft socks, candles and lotion. For men, reading material and snacks are good choices.) Offer a ride to treatment, give a gift card, plan a favorite distraction like a movie or sports outing. Depending on the nature and closeness of your relationship, say “I’m coming over on Saturday to do your laundry,” or mow the lawn or whatever chore seems like it might help the individual in need.
The point is show up. You will not be intruding. I PROMISE YOU WILL NOT BE INTRUDING. What you will be doing is taking away the temptation the sick person is feeling to insist “I’m fine. I don’t need that. Please don’t trouble yourself.” Helping without asking, without putting the burden on the person needing help, is a consideration too few adults contemplate and do well. Be the person who excels in this area.
4. Remember the impact of cancer lasts long after treatment concludes.
When dealing with a cancer diagnosis and treatment, the “logistics” are an overwhelming puzzle to be solved. Treatment options, insurance coverage and requirements, physician selection, medical bills, transportation, and work considerations including the protections offered by the Family Medical Leave Act are among the details demanding immediate deliberation and decision-making. Every cancer diagnosis comes with a crash course in the disease and its treatment, and the process requires far more energy and attention than we ever imagined. Understandably, there are many days when our brains are fried.
Even so, the emotions of cancer represent a puzzle that will require far longer to figure out. Long after we recover our physical health, we may not have recovered our mental health, in part because we are consumed with the physical manifestation of the disease, in part because, I believe, attending to our emotions is the harder work to do.
I could write a million words about how to approach the “soul work” cancer demands, but my point here is to say the person may not “be well” long after they “look well.” Continue to offer encouragement, support and help for as long as you can. And then go a little longer.
For those with cancer –
5. Ask for help early and often.
When you are under water – and there’s no better way to describe dealing with cancer – resist with all your might the temptation to fold in on yourself. Find somebody to reach out to, preferably a few somebodies. In my case, I made an email list of about three dozen friends and family, some near, some far, and I wrote them frequent email updates. My first message – in essence – said “I need your emotional support.” Unsurprisingly, my group responded like the army of fierce friends I know them to be – in droves, with equally frequent expressions of love, insight, encouragement and humor. Email messages, texts, phone calls, greeting cards, flowers, and gift packages arrived weekly and on important milestones, along with invitations for lunch dates, movies and more. Many expressions came at the exact moment I most needed them, proving the Universe has our back. Reaching out opens the channels for these expressions to come to us. The gifts of love await us if we will only open ourselves to them.
Don’t let the fear of putting your feelings into words stop you from reaching out. Even if you think you can’t string two good sentences together, your friends will be clamoring for news. So rather than sending a slew of one-off updates by text or phone, keeping folks informed by email will actually be easier on you. And, it ensures YOU control the message. It also helps you process the experience – and that’s a powerful form of healing that shouldn’t be discounted.
6. Keep it real.
If you’re down, don’t be afraid to say you’re down. Denying unpleasant feelings is the most effective method of ensuring they linger rather dissipate.
I’m a natural optimist, and I believe my predisposition to believe everything will work out was evident in my early messages to friends. Unfortunately, this can create an inner expectation to “stay positive.” There were times when I typed then erased messages to my friends after thinking “this is too depressing.”
Think about it – if I don’t believe I should be depressed during cancer, then when would I ever allow myself to feel sad? The pressure to keep a stiff upper lip – to never admit “This sucks and I’m suffering” – can be a tremendous impediment to healing.
After my mother died, I felt depressed for several weeks. A friend suggested I start taking an anti-depressant and I vividly remember my response. “No, thank you. I want to feel my sadness. I want to process my grief and sit with it for a while. I think of it as honoring my love for my mother. I also think it’s the fastest way to heal.”
The irony is that I recognized this wisdom when my sadness was for a loved one, but denied it for myself. How much more self-denigrating can I be than to deny my sad feelings about my own situation? So, let me say it out loud: Of course it’s okay to feel sorry for ourselves! It’s natural, it’s human, and it’s immanently understandable when faced with something like cancer.
I knew I had turned a corner when I was able to write to my friends that I’d had a hard week, explain the circumstances and the feelings they prompted, and resist the urge to downplay or dismiss it.
I felt almost instantly better. And my mood lifted quickly once I quit trying to suppress it.
By the way, please don’t think I’m suggesting mood medications should not be considered. After consulting my doctor, I started taking an anti-depressant shortly after my diagnosis. You and your physician can make a determination about what will work best for you. I’m simply saying that acknowledging unpleasant emotions and moods is crucial to managing a difficult illness and to healing.
7. Count your blessings.
Literally, count them. In your head or on paper, count as many times a day as you need to be reminded that the world and/or your life won’t end this minute.
I started each day with a meditation that included an ever-changing gratitude list. I ended each day with a prayer that included a recitation of that day’s blessings. On the worst day I can remember through the whole ordeal, when I had cried a lot of tears and felt sick to my stomach with worry, I vividly remember starting my prayer that night with “Thank you Lord for the blessings of this day” and meaning it. After all, some bad things had happened, but they weren’t even close to the worst I could imagine, and I felt compelled to remind myself and thank God for that context.
8. Lighten up, Francis.
There’s a reason “Laughter is the best medicine” is a time-tested aphorism. With a disease like cancer, there will be no shortage of absurdities and indignities. Finding a way to laugh early and laugh often will carry you a long way toward healing and recovery. And you’ll have a lot more fun that way, too.
In my case, I identified three topics about which I could regularly joke. One was the good looks of my male oncologist (whom I called “Dr. Dreamy”). One was the appearance of my breast after a lumpectomy, which I described in detail to my friends (“imagine a crushed soda can”). And one was the dismal (read: stupid) selection of labels available to those with cancer. “Cancer Victim,” “Cancer Warrior,” and “Cancer Survivor” were just three of the many terms I panned before settling at the very end on “Cancer Graduate.”
My point is that I searched for humor as regularly as I searched for gratitude, which was daily. Even in the midst of the hardest days, I tried to find at least one moment to laugh at myself and the situation. Funny movies help, too.
9. Acknowledge and accept the world spins on.
Cancer is an all-consuming experience for the person with the diagnosis. For most everyone else, it ranges from a blip, to an inconvenience, to an unfortunate but hopefully remedied circumstance.
During my cancer journey I felt like there was a shrill voice inside my head screaming “I have cancer! I have cancer!” There were many times – particularly during life’s banalities and stressors – that I wanted to scream at the person in front of me “Do you remember I have cancer?!” Everything – every word, every action, every deadline, every want and need by everyone in my orbit – seemed inconsequential in comparison.
Cancer is so profoundly life-altering that I wanted to talk about it far more than I felt others were willing to indulge me, including my husband and children. Continually suppressing an urgent emotional need takes a toll and that’s another reason why expressing myself through written updates became so important. It was the place I could go to contemplate and express the myriad emotions and insights related to my illness and its impact on my world. Journaling can be another refuge, as can a support group, clergy member or a therapist.
The point is to find an outlet as best you can, then treat yourself and others gently as you discover their capacity to think and talk about your illness.
10. At the end of the day, remember the world is good.
The first email message I wrote to my friends included this passage:
Here’s the part of the story I am most interested in . . . how my walk through this world might be profoundly enhanced and expanded as a result of this cancer journey. The basis for my discovery and understanding is premised on four, core beliefs:
- The world is inherently good and we are connected through Love and Grace to our Higher Power.
- Faith means belief that everything will be exactly as it should be.
- We are uniquely equipped as human beings to both ponder and commune with the Divine and to find sustenance, inspiration, meaning and peace through that communion.
- There are no mistakes, only lessons. Repeat lessons carry a special purpose.
I thought I believed this in my life BC, but I’m not certain I could have articulated it with such focus and passion without having faced cancer. The reality for most cancer patients is that they will be told they have a malignancy long before they understand how advanced it is. Whether that span is a couple of days or a couple of weeks – and in my case it was 10 days – there is ample time to contemplate mortality and come face-to-face with the sum of your life. It is clarifying like almost no other experience and I felt a beautiful and wondrous melting away of everything except love and wonder.
Yes, fear crept in, urgently and often, but I kept reminding myself it’s a natural reaction to uncertainty – and cancer is nothing if not a vast conjecture. We live our lives saying nothing is guaranteed but we don’t really believe it until the bargain we least wanted knocks on our door. And when it does, I believe the only appropriate response is to thank God for the opportunity to see the world with new eyes.
11. (The world is good) And you are, too.
One of the first people I called after my diagnosis was a lifelong friend. Making “that” call to your loved ones is one of the hardest things you face as a newly diagnosed cancer patient. In this instance, I remember very little about our conversation except this line, spoken to me through tears: “You are a good person, Joan. I’m so sorry this has happened.”
I will never forget the impact on my heart and my psyche of that expression of a friend’s love. It was the sentence that broke my composure, and I started crying, too, despite having completed two previous calls that day with nary a tear or even a crack in my voice.
It made me think about why we often tell each other “You are strong,” “You are smart,” “You are generous,” “You are talented “. . . but we rarely say “You are good.”
The message hidden within “You are good” is “You are enough.” You don’t have to DO anything to prove it. Your worth is in the being, not the doing.
It hit me like a ton of bricks and it’s a sentiment I will use from now on with anyone facing a life-altering diagnosis.
None of us deserve cancer and while we may think we have enough information about healthy lifestyles to prevent it or cure it, we don’t. In one of my last messages to my friends when I declared myself a “Cancer Graduate,” I added this thought: I am keenly aware that some schooling takes advanced study. If it comes my way, I’ll be prepared. With a BS under my belt, I can earn a MS and even a Ph.D. if more Cancer School is in my future. Only God knows.
When only God knows, the assurance of hearing our being is enough is a precious gift.