Every once and a while I am able to give one of my patients a much more meaningful prescription than the cancer drugs I can provide them. I was able to do this with CS. She had a big impact on me.
At the age of fifty-two, CS was diagnosed with stage four adenocarcinoma of the distal esophagus. She had incurable disease involving her liver and the lymph nodes in her chest and abdomen. She was referred to medical oncology to discuss the merits of palliative chemotherapy.
When I met CS for the first time, she was accompanied by her sister. For every visit thereafter, her sister was by her side. It seemed to me these two were thick as thieves.
CS had significant symptoms from her cancer. She was in pain. She was nauseated and vomited often. She could not eat. She was losing weight at a fierce pace. She told me she felt she had been abandoned by the medical system, that nobody was willing or able to help her. She was also very much struggling emotionally with her terminal diagnosis. She did not want to die. She had too much to live for.
I got the message quickly that CS was a giver. She was one of those people who did things for people, who went out of her way to help, who was there when someone needed something . . . anything. Even her work as volunteer services manager was about giving. She was a beautifully special person that brought light into whatever room she entered and who helped those around her to shine.
CS, her sister, and I discussed her prognosis and what chemotherapy might do for her. I told her as clearly and kindly as I could that her cancer would likely kill her within a year. The chemotherapy we have for her cancer is proven to extend life but only by a handful of months.
CS did not like what I told her, but she understood. She was interested in whatever we could throw at her if it meant more time. First, we had to try to deal with some of her cancer-related symptoms.
CS left our first visit with a handful of prescriptions for the symptoms she was having. We decided to try a medication for heartburn and another to try to alleviate her nausea and vomiting. We agreed she would start on a bowel routine to make sure constipation wasn’t exacerbating her nausea. She left with a prescription for morphine because pain was a significant issue and if we could not get that under control, it would be difficult for us to get her moving around more to do the things she enjoyed doing, even if it were just for a little while.
A few weeks later, I reassessed CS. Her symptoms had improved. They were all still present to some degree, but she reported feeling much better. She had a central line placed which would allow us to deliver the chemotherapy we decided upon. She was eager to get treatment started. We had successfully accessed an immuno-oncology drug for her via a special access program which was the only way for us to get access to such a drug for her cancer indication at the time in our jurisdiction. So, we were on our way. Treatment started.
CS, her sister, and I had the opportunity to laugh together at almost every visit after that first one even though she wasn’t feeling all that well physically or mentally. During her second or third visit with me she told me a hilarious story of the encounter she had just had with the laboratory technician who had taken her blood. The story would take too many words to repeat but the resultant laughter almost had three grown women peeing their pants in the examination room. I came close to falling off my little doctor rollie chair! I was literally laugh-crying when I left that room. I have never laughed so loudly in front of a patient.
Over the next few months, CS managed as best she could. She continued to struggle with nausea and vomiting, in part because of her disease, in part from the chemotherapy. We juggled her anti-nausea medications several times before we hit on a combination that seemed to do a decent job. Her mid-abdominal pain came and went and came again. The same was true of her energy level. She wasn’t sailing through chemotherapy easily, but she wasn’t crashing and burning either . . . yet.
During another visit when CS had been having a good week, I entered the examination room to her exclaiming she was dancing in her kitchen again. I asked her to tell me more. Her sister did better than that, pulling out her phone to show me a video of CS dancing around in her kitchen, shaking her hips and her booty to “Baby Got Back” by sir Mix-A-Lot, all the while her chemotherapy pump still running. The video gave us another solid round of laughter and another brilliant moment. I saw how a patient of mine lives while she is dying. I will remember watching this video and the laughter it brought always.
A few weeks later CS had her first monitoring CT to determine if her treatment was working. I was happily able to report to her that her cancer spots had shrunk. CS and her sister cried happy tears.
It was just after Christmas then. Despite the good news, chemotherapy was causing side effects CS wasn’t happy with. To be fair, it was hard to tell how much of what CS was describing was related to treatment versus her cancer but in the setting of a good-news CT, we leaned toward chemo being the more likely culprit. So, I gave CS what might turn out to be the best prescription I have ever given. The photo that accompanies this story shows the prescription. I wrote CS a prescription for:
1) permission for a treatment break, and,
2) dance to Baby Got Back again.
CS and her sister cried again when they received this prescription. They both also hugged me. I heard later that CS put this up on her fridge to look at often.
It was only a short time later that CS presented to my clinic in terrible shape. She looked very ill. Something was not right. Her pain had skyrocketed. I could barely touch her abdomen without her moaning in discomfort. She was vomiting. She was febrile. I admitted her to our hospital for investigations. She was so hesitant to accept this admission. I think she somehow knew if she came into hospital, she would not get out.
We did an emergent CT. The CT showed an organ had perforated in her abdomen.
CS clinically worsened before our eyes over the next twelve hours. She was in and out of consciousness. Her pain was difficult to control.
I had one of the hardest conversations I have ever had with a patient at her bedside the morning CS died. Her sister was there, of course. We had to decide if CS wished to be transferred to a different hospital to be assessed by a surgeon who might be able to open her belly to fix whatever organ had perforated. But I knew the chance of “fixing” CS was next to nil. In almost all cases where advanced cancer patients perforate an internal organ, death ensues quickly. If we did nothing, death was a certainty too. I needed to know what CS wanted to do.
She looked me and asked what she should do. She asked what I would have her do if it was my choice.
I told her my honest thoughts – that she was dying, that a surgery was too risky, that she would either die here at the cancer hospital while we tried to manage her pain or die during or shortly after a surgery because I did not think anything was “fixable”. She looked at me for a long time and said, “I don’t want to die”. All I could say back was, “I know” and “I am sorry”.
CS did not listen to me. She had a mind of her own. She wanted to go out fighting the fight she would be proud of. She told me again she did not want to die. She wanted the surgery. So, we transferred her urgently to a nearby hospital where a surgeon was ready to take her to the operating room.
When CS got to the neighboring hospital she had deteriorated further. She was near death. A surgery was not possible. CS died within hours of that transfer. Miraculously, her family managed to get to her before she passed. She died in her father’s arms with many other family members surrounding her.
I hope CS danced into death the same way she danced through her life – with joy, with grace, and with a whole lot of love. CS was a beautiful soul. I am sure she left a part of herself within all those she loved. She is surely the part of her loved ones that smile, that has a joke ready to be told, that dances.
Author Notes:
Cancer sucks. That is a fact. But there are other facts about cancer that are more uplifting. One fact I have the privilege of witnessing which I have learned from my patients is the following: joy is more powerful than cancer.
CS had a terrible cancer, yet she still laughed and made others laugh. She was in pain, but she tried to shelter those she loved from that pain. She was dying but she still lived, with joy, while she danced playfully in her kitchen. Thank you, CS, for the very real reminder that joy is a choice.
Things don’t always go our way. Bad things happen. Accidents happen. Job loss happens. Divorce happens; sometimes they happen twice. Mental illnesses, including addictions, happen. Other illnesses, including cancer, happen. Pandemics happen. It would be nice if all of these things were in our control but they are not.
We don’t have a lot of time here. Some, like CS, have less time than they should. Why do we waste so much time on people, places, and things that don’t matter? Why do we harbor resentments that only harm ourselves? Why do we allow our vices and addictions to lie to us, in turn causing us to lie to ourselves and to those we love? Why don’t we seek out joy? Why don’t we insist on manufacturing more joy each day?
Stories like CS’s make me so much want to try to live a joyful life – to learn, laugh, love, forgive, and accept. In addition, whenever possible, I want to dance with joy: a two-step, a little disco boogie, the Time Warp, the Loco-motion, the Twist, some sort of easy-to-learn line dance with some fancy boots on, the Macarena, the Y.M.C.A., the Bird Dance, even a fun TikTok dance with my daughter that should take me five minutes to learn, but instead takes me an hour.
I am curious to know if you can give yourself permission to dance, reader? If not dance, what will you give yourself permission to do today to make your heart a little more joyful?
