We’ve launched another school year around here, and thank goodness, all my kids seem happy.
I too am back at work: writing syllabi, attending meetings, working on my research. I too am happy.
Even though we are only a couple of weeks in, I have already learned the hard way that I am still going to take awhile to get myself up to speed in any way that feels recognizable or familiar.
The biggest difference is that my old fallback, Plan B, is no longer possible.
Working parents probably know what I’m talking about. There is very little room for error when you have your schedule, your partner’s schedule, the kids’ schedules. There are few degrees of freedom. It’s the unexpected things that require a regrouping of Plan A –– a kid gets sick, a car needs repair. Truth be told, even the expected stuff can perturb the delicate balance of Plan A –– early dismissals, dentist appointments.
Up until now, my Plan B has been to take advantage of my flexible schedule. In my job, the work just needs to get done. For most things, it doesn’t matter when or where it happens. I can read, write, grade, review, plan, email at almost any time or place. So my usual way of absorbing these upsets –– my Plan B –– has been to work at odd hours in the evening, often after the kids are in bed.
That time is no longer mine for the taking.
I am lucky if I have much cognitive functioning past 3 PM, let alone 9 PM. This past week, most of my “good work” has to be done by lunch time. After that, I’m able to answer simple emails, file my papers, or straighten my bookshelf, but the heavy thinking time is over.
I am coming up with other ways to insulate my work time. It’s not what I expected, but I think I might pull it off.
My new Plan B?
I’m asking for a little latitude.
The hard part is that I have always prided myself on my punctuality, on making meetings and meeting deadlines. If I say I will do something, I come through. I am having to let that go a bit. Sometimes, I ask forgiveness upfront so that I do not feel the distress of letting somebody down. I’m adding “ish” to any promised deadline. I have to say no to things that are outside of the essential parts of my job, even if I feel a pull toward them for reasons of citizenship or duty.
Because my hair has come back and the worst of my treatment is over, I find that I have to explain myself occasionally. I tell people to think of me as being on energy conserve mode. When I’m on, I work pretty well. But I might unexpectedly need to shut down and reboot. If they still look puzzled, I might truck out the notion that it takes you as many months to recover from treatment as you spent in it.
Eventually, people get it. That’s my new Plan B. I’ll let you know how it goes.
The landscape of my friendships has shifted during this past year. Don’t get me wrong. I feel unbelievably fortunate. On the whole, my friends have come through for me in every way imaginable. Some of my friendships have deepened, as people have come to know me differently, have reached out to me in new ways. At the same time, as is inevitable in a crisis, there have been a few surprises in the other direction as well.
I love all the cards my friends have sent me. I look at them when I feel sad.
Yesterday, the New York Times published an essay about how others respond to you when you are in crisis. We know quite a bit about how people respond to their own crises. Ideas like resilience, resourcefulness, support and social networks get tossed around when we hear about what helps people make it through. It turns out, however, that we know very little about how people respond when those near them are in distress.
I have thought a lot about this because my circumstances have put me in an extended state of neediness. Between losing my step-brother and my own diagnosis, I have become a person who undeniably relies on others. I also look at others whose crises have hit close to home, like my friend’s recent death. Many of the tears I shed at his memorial service came out of the horror of realizing how close my family and I were to sharing his family’s fate.
The first thing I noticed when I shared my news was that friends who, as children or young adults, had lost a parent to cancer took the longest to respond. They all did eventually, always apologizing for the delay. Perhaps it’s my social scientist self, but I was so struck by the consistency of this phenomenon, it was easy to forgive. There was something much greater than flakiness at play. The emotional depths of the notes I eventually received confirmed that these friends were not being nonchalant. In fact, compared to so many people, they knew too well how serious my situation was.
One of these friends has continued to struggle in connecting to me through my treatment. At first, I was disappointed. This same friend stood out for the opposite reason during my brother’s time with cancer. She was literally there for me from the beginning to the end, holding my hand, accepting my grief.
I was with her during the hellish week of his diagnosis. He had been hospitalized for unclear reasons, and each day brought new test results signaling increasingly dire news. I kept ending up on the short end of all the bargains I was making with the Universe. Please just let it be a tropical disease. No? Then please let it be a treatable cancer.
After a few days of falling through this hellmouth, I awoke out of a dream sobbing. My friend was there, ready to delay her morning plans, to listen to my fears and offer her support. Later that week, she literally picked me up off the floor and got me to eat when the gravity of his disease became an inescapable truth, and I felt the world collapsing around me. As his treatment went on, I knew I could call her any time of day or night. In the end, she traveled a long distance to be there for me, to hold my hand, watch my children, do whatever was needed, so I could cry at his memorial service.
In between his death and my diagnosis, she confided in me that her mother’s death from cancer suggested she could carry the BRCA gene, a marker that would put her at higher risk for ovarian and breast cancer. She had decided not to have testing, because a positive result would open a course of medical decision making she did not want to endure. Even though her risk for breast cancer would increase dramatically from 12% to 60%, it would still be a less than certain outcome.
This wonderful friend, in a certain way, has kept her distance from me during my treatment. It’s not that she has ignored me or tried to sweep me under the carpet. Not at all. She sent me a really cute hat during chemo. She bought one of my t-shirts. She has supported me in many, many ways. But something has shifted. A subtle distance settled between us.
I thought of how consistent the silence was from all friends who had lost a parent to cancer. I recalled our conversation about her own cancer fears. I recognize how many similarities we have in our lives. I put the pieces together for myself and figured out that my situation spooks her deeply.
A couple of months back, she called to apologize.
“I’ve been meaning to tell you something. I don’t know how to say this.” Her voice filled with emotion. “I’m sorry. It’s just so hard for me…”
“I know,” I said as gently as I could. “I get it. You don’t have to explain.”
And it’s true. I do get it. As much as the landscape of my life has shifted, I know she will be my friend on the other side of all of this.
Maybe there are certain parts of our journey that even our dearest friends can’t tolerate. The fear, of course, is that maybe our crisis will become too deep for any of our loved ones to endure with us.
Sometimes, other people’s suffering just cuts a little too close to our own worst fears. I think it’s human. And I think, sometimes, it’s forgivable.
Last night, I had a party with a bunch of old friends. We are in Seattle for the week, our home for six years before we moved to a new town, just months before my diagnosis.
It has been challenging being in a new place, being so vulnerable and needy. Our closest friends were far away and did an amazing job of being there for us. Some of them flew out to help. Some of them sent notes and gifts. Some of them phoned or emailed or commented on my blog. Our friend Howie sold some of his photographs to help us cover our medical expenses.
But last night was a party. And I got to hug so many people from all different parts of this other chapter of my life. I had the gift of being reminded of who I was before I became the Woman with Cancer. I saw former students, colleagues, friends, and neighbors. I got to talk to some more than others, but I gave everybody I saw a great big hug.
Of course, cancer was still in the room. My friend Josh‘s kids were there, running around and playing with the other children, having buried their dad a week before. My friend Phil, who is about to celebrate his 5 year Cancerversary, was there with his family. He is as healthy and happy as I have ever seen him. A couple of other people who lost family members to cancer had emotional conversations with me. The brutality and arbitrariness of this disease was in the room.
Right now, I am in limbo. My cancer story is between Josh’s and Phil’s. We don’t know for sure what my ending will be.
But in the meantime, I am happy to be here. And I am grateful to celebrate how far I have come. I am glad for the embrace of good friends.
His wife, Kim, is one of my friends. Our kids are roughly the same ages. Kim and I met one New Years Eve when we were both pregnant with our third children. Their community was my community when I lived in Seattle.
I want to honor him as somebody who had a big impact on me and has been a role model to me as a cancer patient. He was a huge support when my brother was going through treatment. Josh’s cancer battle was more protracted than my brother Jeremy’s. Jeremy stayed in treatment from the time he was diagnosed until he entered hospice less than 2 years later.
Josh went in and out of treatment several times. He had periods of remission. Enough time to build a family, to edit his movie about his second round of treatment with epitheliod sarcoma. That was the bout where he lost his left hand.
If you see Josh’s movie or read his blog, it gives you an inkling of how he managed to keep his humor and humanity. He used his cancer as an opportunity to dig deeper spiritually, to educate the rest of us about what it was he was going through. In this way, he was a role model for me. He helped me have the courage and commitment to share my own treatment with others because I knew how much I learned from what he shared. His honesty has helped me be honest.
As a blogger and filmmaker, Josh was a vigilante patient. He often brought his video camera to his appointments or hospital stays (sometimes to Kim’s chagrin). Once, he was hospitalized and the doctors were unsure of the cause of fluid build-up in his lungs. He was in his hospital bed, anxiously awaiting the results of tests that might clarify his situation.
A resident doctor came in to check on him. Josh caught on film this man’s utter ineptitude in interacting with him. To give you an idea of how bad it was, Josh put it on YouTube under the title “Doctor Asshole,” which was painfully accurate. In the clip, Josh was asking completely reasonable questions and Dr. A kept obfuscating, eventually becoming belligerent and rude.
Watching the clip, I kept saying aloud, “Just say, ‘I don’t know.’ Three words, dude. ‘I. Don’t. Know.’ And then say, ‘I’m sorry.'”
Josh’s hospital made him take the clip off of YouTube, but he knew that the doctor had been reprimanded and, hopefully, educated about why his approach was completely unacceptable. In this way, Josh contributed to improved treatment for all the patients that came after him in this young doctor’s career.
That was only one of the many ways Josh was courageous and heroic. To get to know Josh more, watch his film or read his blog.