Last month, a work friend told me about a gossipy lunch conversation she took part in. Some colleagues were sizing up the real life skills of the research professors in our department, predicting which of us would survive hard time in prison.
Smiling, she told me, “We decided you would make it. You have the skills.”
She knew it was an odd compliment, and we had a good laugh about it. Of course, I hope we never find out if they put their money on the right horse in that race.
I know that her praise was, in part, a nod to coping skills I trucked out this past year. Cancer treatment is definitely hard time.
I suffered a lot. I hated it. But I was a pretty kickass cancer patient. I knew how to stay on top of stuff, chase down information, use my resources, and persevere.
And of course I got by with more than a little help from all of you. So thanks for that.
But now I am entering new waters.
HMS Survivor
Although diagnosis is a process, there is usually a clear moment when you hear the words, “You have cancer.” There is a distinct Before and After that you can turn over in your mind, the moment where everything changes. You slip into an alternate reality and must make your way through.
Survivorship does not have such a clear beginning. There are those who believe you are a survivor from the moment you are diagnosed.
For me, survivorship came in phases. I first felt like a survivor when the Big Treatment (chemo, surgery, radiation) was over and I had the first strange sealegged experience. Then, with my last infusion in November, I was no longer doing anything medical to fight any lingering cancer cells that may not have read my very passionate eviction notice. Finally, two weeks ago, I had a medical apparatus — my port — removed from my body.
Cancer survivors often flash each other their port scars. It’s our version of a secret handshake.
I have a scar now where the port used to be. The Survivor Ship has set sail.
So now what?
I am still tired. My body is different. I have signs of PTSD. Havoc has been wrecked in many parts of my life.
Now that the hard time is over, am I supposed to pick up where I left off?
It’s not possible. Too much has changed since I first heard those words, “You have cancer.”
So today, I went to my cancer center’s survivorship clinic. I spent half an hour this past weekend filling out a few surveys designed to assess psychological, social, and medical issues.
I met with a social worker and a nurse for a total of three hours, which is a luxurious eternity in the medical world. Both were wonderful. They educated me in a way that attended to my particular situation. It has already helped alleviate my anxiety. The nurse produced this beautiful two-page summary of my diagnosis and treatment that I will have to give to all my future doctors. She discussed all the possible late effects of my treatment and how I should plan to monitor and manage them. And she said the priceless words, “You are healing very well.”
The social worker is the first counselor-type person I’ve met with since my diagnosis who I could talk to honestly. I saw two other therapists during my treatment, but neither had an oncology specialty. I felt like I was having to educate them too much, so I quit counseling as an energy preservation measure.
This social worker, it turns out, is herself is a survivor.
I spoke with her at length. My takeaway was this. During treatment, survival took one set of coping skills that could be best described as rallying: my friends, myself, my family. Treatment is about continually picking yourself up and moving forward.
After treatment, survival looks different. From what I gather, it’s more about waiting and acceptance, letting things heal, letting time pass, and allowing your new self to unfold.
I am a problem solver. I am happiest with something to do. I imagine that it’s my capacity to rally that led my colleagues to imagine me as a successful hard time prisoner.
Like my cancer treatment, most jail sentences have a beginning and an end.
Being a survivor, however, is a life sentence.
It seems like there’s a lot of waiting. Waiting, waiting, waiting…
I don’t know how I’ll cultivate the coping skills for that.
I wanted to commemorate my past year somehow. I thought of writing an entry about before and after, but it was too complex and probably of interest to nobody but me.
Instead I made a slide show of my year of treatment. I thought it was going to be emotionally difficult, seeing myself go from healthy to sick and somewhat back again.
What surprised me was how happy this made me. I had tons of pictures of the friends and family who came to help and support us. There are even a bunch of folks who helped out and are not in this slide show. I had so many pictures of my kids looking like kids. I know there were important parts of the year that got left off camera, but seeing how we managed to stick together, with all of this love as a glue, was healing.
The music is “Here I go again” by Danny Salazar. Right after I was diagnosed and we were in that awful waiting stage, my husband and I discovered his band. He was playing in a local dive and we tried to go every week. This song spoke to us, and we got to dance and sing along to it quite a lot in those early days.
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.
