Survivorship.

In 2016 I received an invitation in the mail from Penn State Cancer Institute. Considering most of my mail from them up to this point was bills, scan authorizations and test results, I was unsure of what exactly I was holding

It was an invitation to their annual Survivorship Celebration.

It hadn’t occurred to me before this point that I now qualified for such a thing, but after the rollercoaster of the prior year’s diagnosis and treatments, survivorship sure felt like something I wanted to celebrate. So Joe and I RSVP’d a ‘heck yes’ and had no idea what we were in for.

We met all kinds of people and heard all kinds of stories and saw all kinds of performances. There were raffles and support groups and great food. During lunch we were sitting at a round table with a group of people we had known only as long as the food on our plates. We were prompted by the emcee to go around and share how long we had been survivors. This was not a language I was well-versed in. I started counting back the months since my all clear PET scan. Had it been five months or six? Then I tuned back in long enough to hear the woman who was sharing say that she was a three-year survivor. What struck me about that was that she had already mentioned that she had pancreatic cancer and still had active disease. So was survivorship not how long since you had “survived” cancer? Joe must have been thinking the same because he asked the clarifying question that we both needed – “how do you measure survivorship?” It turns out you are a cancer survivor from the moment of diagnosis through the remainder of life.

Well, last week I celebrated 1o years of survivorship.

A decade. When I was diagnosed for the first time I was still in my twenties and was scared I wouldn’t see another decade. Joe and I hadn’t yet been married a decade. If you added their ages together, Owen and Myra were only half a decade.

How do you celebrate a decade of living?

I’m sure the answers to that question vary as much as the people answering them. For Joe and I, we decided a getaway felt like the best celebration. We hopped on a plane and flew to Nashville for four days. We made some loose plans, secured the cutest Airbnb and were ready to make the most of exploring a new city. Our time was going splendidly – great weather, amazing food, fun sites, unforgettable experiences, much needed rest. Then it was May 14, the eve of my Cancerversary. I had some personal intentions for the next day. There would definitely be intentionality and deep meaning in each activity. There would be pictures and smiles and joy in each moment. There would be time of solitude and reflection and writing, of prayer and gratitude. We would get dressed up and make it to our 6pm dinner reservation and toast life and reminisce all that God has walked us through.

I woke up on May 15th, a decade after being diagnosed with Hodgkins Lymphoma, and I knew immediately that the day was not going to go according to my plan. At least one day a month I am can’t-get-out-of-bed sick. I am keep-a-bowl-close-by and back-and-forth-to-the-bathroom sick. My cancerversary was that day.

I tried to fight it. I tried to push through. I couldn’t. Not only could I not be upright without getting sick, I couldn’t even think meaningfully about the day. I couldn’t count all the ways in which I was grateful. I couldn’t pick up a pen and write. I couldn’t celebrate. I couldn’t make it to our dinner reservation. I couldn’t do anything to change my circumstances.

The irony of it all is really rich. And although there has been sorrow and anger and self-pity and guilt, as I have had time to reflect, the meaning of it all has been really rich also.

Never once in the last decade have I been able to change my circumstances. I couldn’t change my first diagnosis or the days that followed. I couldn’t change that I had to have my port placed while I was still recovering from my lymphadenectomy and that I started chemo on the same day I had to get my stitches out from surgery. I couldn’t change how I felt post-chemo. I couldn’t make myself have more energy or a greater appetite or less nausea. I couldn’t make my one-year scan clear and I couldn’t make my biopsy negative. I couldn’t change the phone call telling me the lymphoma was back. There was the clot in my heart that held up my stem cell transplant and the hair loss for a second and third time and missing Owen’s preschool graduation and wearing a mask everywhere pre-covid and I couldn’t change anything about any of it. I couldn’t keep my 6-month post transplant scan from lighting up. I couldn’t stop my body from rejecting the immunotherapy treatments or keep the cancer from growing in the absence of any treatment. I haven’t been able to make everything go smoothly even in the absence of active disease

All of these circumstances, including waking up sick on the one day I was supposed to feel awesome, have been entirely out of my control. But the meaning in being unable to control my circumstances once again on this day, my survivorship day, my cancerversary, was a reminder of the greatest gift of the last decade. Even in the uncontrollable, we are never entirely without agency in our lives. Stephen Hawking famously said “Where there is life, there is hope.” While this is a beautiful quote from someone who knew suffering intimately, maybe a better example of what it looks like to still have agency in the midst of uncontrollable circumstances is Viktor Frankel’s observations of those around him during his 3 years in four different Nazi concentration camps. He said that “Everything can be taken from a man but one thing: the last of the human freedoms—to choose one’s attitude in any given set of circumstances, to choose one’s own way.” This is not an ignoring of what is, but a stubborn choosing of what is life-giving when you are surrounded by death. In the Psalms, there are many examples of David in one breath asking God why he has abandoned him, why he is crying out to him and there is no answer. There is deep anguish and lament and then there is a reminder of what is true about the one he is crying out to.

There was crying out to God last week and there was some feeling abandoned. Then I was reminded of the last decade. I remembered the friends who surrounded me, folding laundry and sitting in the infusion room and flying in from far away places to remind me I wasn’t alone. I remembered the doctors and nurses who have cared for me like I was their only patient. I remembered the family who cared for kids and cleaned spaces and made food. I remembered my community that showered me with support over and above what I could ask or imagine and sent our family to Disney World. I remembered each ordinary day of waking and working. What a gift the last decade has been. Deep anguish and lament and deep joy in the one whose steadfast love holds me close.

Survivorship didn’t look like a round table with other survivors this year and it didn’t look anything like I pictured or planned, but it is a gift to say that I am a 10-year cancer survivor.