My sister has been staying with me the past ten days as I recover from surgery (three weeks ago). It’s been a really great time of visiting and she has leant her strength where I don’t have it. She has cleaned my house top to bottom (you should see her wield a Shark vacuum and all its attachments), done all the cooking and grocery shopping, AND cleared out the garden (no small task) of weeds. But mostly she has accompanied me on walks and in talks and watching fall come to the prairie.
She also accompanied me to my oncologist appointment on Tuesday. It was a roller coaster of a day.
I have been expecting to have two more rounds of chemotherapy– to get whatever is left– and from the time just before the surgery until this week I have been dreading it. But back at the cancer center having my port accessed by the wonderful nurse, filling her in on my surgery and experience with the nurse’s strike, and hearing how things work at CentraCare, which is a non-union shop with strong representation for the nurses, a lot of that dread melted away.
In the office visit, Dr. Ufearo was his usual inscrutable self while I was trying as I always am to cast whatever he said as best-news-ever. Mercy Hospital hadn’t sent the pathology report, but I had it with me. He reviewed it, listened to my chest, and examined my nicely healing incision. We had some of the blood work back but not the all-important CA-125. He explained that although it wan’t the best marker in some people, it seemed to go up and down for me in relation to the treatment (it had been at the very good number of 18.7 since June 1– below 35 is the goal). Now that we’d finished 18 weeks of chemotherapy and the surgery, we would watch that number when deciding what else to do.
Although he recognized the restaging of the cancer in surgery to IIIC, he emphasized that was the surgical diagnosis, different from the clinical diagnosis, which was and would remain stage IV because there was no doubt about those initial nodules and cancerous fluid in the lung. He’s a bit of a downer in that way. We left with the plan of returning in early November for a scan and to check the blood work again, and see at that point if more chemotherapy was necessary.
My sister was somewhat euphoric, although I wasn’t sure what to make of it. The word “remission” hadn’t been used, and chemo still hung out there for the next month’s assessment– but maybe a reprieve from that final round would be mine? It was the first time I thought about “official remission,” that time when we would just monitor, first every three months, then every six months, then yearly… starting that clock. I have a narrative in my head (a dangerous one, probably, given this disease) that goes: treatment, end of treatment, ten years, maybe more treatment. So far, especially with that restaging and the optimal debulking result, things seemed to be following that narrative really nicely.
Kathy and I celebrated with a trip to Kohl’s and then came home for my nap.
A call from Dr. Ufearo came in just as I was waking up about 2 p.m. The CA-125 came back and it was up to 193. A scary number for me– how had it risen so quickly? The last time we tested it was just August 7, before surgery. There would be more chemotherapy after all, and in two weeks, not a month.
I had not yet let my hopes get up too much, but still I had to talk myself back down– this was not a quick “return” of the cancer, because we had not finished this entire first regimen yet. I had not been in remission– this was all part of the original plan, and not actually different or more intensive than the usual plan for Stage IV ovarian cancer. It didn’t take away what everyone said was phenomenal results of the first 18 weeks of chemo or of the best-case result and enthusiasm of the surgeon about the surgery– the fact that she had “left nothing visible behind.” Praise God for my intact bowel and no nodules felt on my lungs (whatever might still be lurking there in the lining or fluid– fluid that had not been heard when Dr. Ufearo listened to my chest). Praise God for my intact liver and no complications or infections from surgery. And even Praise God for my CA-125, a marker in the blood that means we’ll be able to tell when more treatment is necessary.
It also set me to thinking about hope. My good, unmet, 7-year survivor friend Annette Collins wrote that I should try to live in the moment and one day at a time and try “to have zero expectations.” And in the tangle of myths the swirl around me, there is always Beth of Little Women— am I handling this like a person who has grit and will survive or the “good girl” who dies? Those are the narratives in my head.
How do we ride the razor’s edge of hope that is not calcified into expectation? Or how do we ride the roller coaster, the waves, the ups and downs, hoping/expecting and then just resetting ourselves for more battle when necessary?
Last night we watched one of my sister’s favorite movies: The Shawshank Redemption. Somehow I missed this movie in the 1990s and it kind of got away from me. It is a movie about hope. And resilience. Convict Andy Dufresne (Tim Robbins) preserves his “freedom” by not becoming a prisoner in his mind– he takes risks. He also applies himself, to build a library and get other reforms to the prison, by writing letters every week for years and years, even when he doesn’t get results. His hope doesn’t make him any less dogged in his efforts. Fellow inmate Ellis Boyd “Red” Redding (Morgan Freeman) tells him to give up hope, accept his fate, because it will make things easier in the long haul. Live without expectations, or maybe expect the worst, and live in spite of it. But to Andy, that sounds like dying, not living.
You have to carry your hope with you throughout the battle. Of course, I am so early in this particular war I am not close to giving up hope– but also it is challenges like these that make one think more closely about hope’s purpose and meaning.
Again, I have lessons to learn from Robby, the man I write to on death row in North Carolina. I have often wondered about his relationship to hope. He is particularly good at living in the moment, and in large part this is possible because he is dedicated to a few relationships in his world– his friend Timmy, and a poet named Edward. He shares my letters and my poetry with them, and sends me their greetings and news of their prayers for me. Of the hundreds (over a thousand?) saying prayers for me through prayer chains and groups and lists and choirs and congregations, these three hold a special place. (How can one not get expectations with thousands praying?? We claim total healing, however long it may take to kill all the cancer.)
I am lucky to have my sister here, and thankful every day for our relationship. It will be hard when she goes tomorrow. But next week Steve’s daughter Julia arrives, and always friends are near. My team is ready– Kevin to drive me to and from chemotherapy appointments again and Nancy to help me grocery shop, and others for whatever is needed. I am hoping this round will be lighter, without the Taxol that caused the severe neuropathy and the allergy.
In the round before surgery I looked ahead to things– the reading in Chicago, the trip to Indiana. Now I look forward to Thanksgiving, our trip to Chicago and family and our day-after stay at Starved Rock State Park, even if I can’t hike as far as I usually do. We will gather around the hearth of their gigantic fireplace and play games, and the restaurant will gladly make me mashed potatoes and whatever else I can manage to eat. I received a gift of cinnamon rolls this week which I put in the freezer looking ahead to Christmas, when all “the girls” will be here. There is a lot to look forward to this time of year. And that, too, is hope.
I wrote this as I explored the meaning of hope after my divorce and it continues to be one of my favorite pieces of writing (and most popular!). It is a centerpiece in my book H is for Harry.
And after my update to friends and family about my roller coaster day, I received so many wonderful e-mails. My friend Kate, who runs the monastery CSA, said she’s been seeing the Holy Spirit in the sand hill cranes lately. This morning we had a visit from our wetland family of four, drinking from the large pond and gleaning from the path near the large oak. Hello, Holy Spirit.
And Annette sent me this prayer by Mychal Judge, OFM, the NYFD chaplain who died in the Twin Towers on 9/11, to help me set my sights daily:
“Lord, take me where you want me to go;
Let me meet who you want me to meet,
Tell me what you want me to say,
And keep me out of your way.“