March is colorectal cancer awareness month. Considering this, for the next four weeks, I thought I would highlight a few of the colorectal cancer patients I have had over the years who have impacted me in one way or another. Carole is one of these patients.
I met Carole in February of 2017 when she was sixty-seven years old. For that visit, and every visit thereafter, she was accompanied by her husband. She had recently been diagnosed with a high-risk, stage two adenocarcinoma of the cecum. The cecum is found in the lower right side of the abdomen and is the first part of the large colon.
The day I met Carole we discuss the staging, prognosis, and treatment of her disease. I let her know that stage two colon cancers have an overall cure rate of approximately eighty percent with surgery alone. Chemotherapy is recommended for stage two colon cancer if there is one or more high-risk feature. Carole happened to have only one of these features: her tumour had perforated, or popped, while it was still in her abdomen. This put her at high risk of cancer growth inside her belly cavity at some point in the future.
The benefits of chemotherapy in high-risk stage two colon cancers are small, in the order of two and a half to five percent. This is a meaningful change to some patients but not for others. Since I cannot make that decision for a patient, options are discussed to help them make the best choice for themselves.
I discussed three chemotherapy options with her: 1) using two drugs which were both intravenous, 2) using two drugs, one intravenous, the other chemotherapy pills, and 3) pills alone.
From the get-go I remember Carole having a hard time trying to decide what option to take. She was visibly anxious about taking chemotherapy. She was scared. She wanted to give herself every extra percentage chance at curing her cancer, but she equally didn’t want to experience the potential side effects of chemotherapy. I remember her not knowing if it was worth it for her to go through the recommended six months of chemotherapy for an extra two and a half to five percent cure. I tried to impress upon her that all those thoughts and feelings were very normal – most people have these doubts and uncertainties.
Carole chose the pills. She did generally well with this chemotherapy. We had to make some adjustments to her treatment along the way but there was nothing out of the ordinary that happened during her treatment.
After this curative chemotherapy was completed in August of 2017, Carole had a CT that showed no evidence of cancer. She did however have an elevated CEA (carcinoembryonic antigen). CEA is a protein that can be detected in the blood. This blood test is commonly done when following colorectal cancer patient after treatment. CEA can become elevated if there are colorectal cancer cells growing somewhere in the body. In the setting of an elevated CEA with a normal CT scan, it is common to get a different imaging test called a PET scan. Not every colorectal cancer patient gets or needs a PET scan; in fact, most colorectal cancer patients do not need this test as CTs are considered the standard of care test to look for cancer spots.
Carole’s PET scan documented an abdominal wall recurrence. Her surgeon took her back to the operating room to cut this recurrence out in November of 2017. Things looked good. Carole and I then talked about the benefits and risks of further chemotherapy using two drugs instead of just one to see if we could kill any other resistant cancer cells off. She chose to do this with a combination of chemotherapy called CAPOX. CAPOX incorporates two chemotherapy drugs: intravenous oxaliplatin and capecitabine pills.
In July of 2018, after four cycles of CAPOX, it was apparent that Carole’s cancer had grown again in her abdominal wall. Chemotherapy was aborted. Carole was taken back to the operating room to try to cut all her cancer out for a third time. Her third surgery was considered a success and we embarked on a surveillance program to monitor for any further cancer recurrences that might be amenable to curative surgical resection.
A year later, I sat across from Carole and her husband to give them the news that her cancer had grown again, this time in places that it could not be cut out. She had colon cancer growing in her lungs and inside her belly cavity. There was too much cancer in too many spots. There was no possibility for more surgery. We had to label her cancer as incurable at that time.
Carole and I discussed quality of life versus quantity of life many times. In her opinion, quality of life was more important than quantity. I appreciated this about her so much.
We had several discussions about taking a wait and watch approach to treatment. With a wait and watch approach, we would not actively treat her cancer with chemotherapy. Instead, she would go and live her life for a few months and then come back and see me after another CT to decide what was next for her – more watch and wait or time to start treatment.
Carole would go on to get three different lines of chemotherapy treatment before her death. She had a significant allergic reaction to one of her lines of treatment which required abandoning that option even though it might have worked for a little longer. Her cancer, for whatever reason, was not very responsive to our drugs. Her cancer had a mind of its own. Her cancer spread to her brain. After her brain metastases were found, she died quickly, with loved ones beside her, while admitted to our hospital.
Now, in my estimate, the thing about Carole that made her so precious was her gentle uncertainty around making her medical decisions. She often stated she didn’t know what to do. Should she take treatment or not? She wasn’t certain what decision was best for her. “Dr. Spratlin, what would you do?”, is a question that she asked a lot. She seemed anxious about what to do, not liking the emotional and mental pressure of making the “right decision” for herself. She was charmingly sometimes flustered, often scared, and moderately indecisive.
Carole always needed a little extra time to consider her decisions after our clinic appointments. She would leave with her husband to go away and think about our conversations. This is not unusual. I will often ask my patients to take some time to think things through and to talk to their loved ones before making a treatment decision. But with Carole this seemed more purposeful, more powerful. Then, when she decided what she wanted to do days to weeks later, she would call and tell me. If I didn’t hear from her for a few days, I would call her for a quick touchpoint to see where she was at with her decision making.
Some would say Carole struggled with cancer-related anxiety. I, however, would like to think she simply had an ongoing conversation with a friend. Her friend happened to be named Uncertainty.
There is so much uncertainty in the lives of my cancer patients, so many unknowns. In the curative setting, most of the unknowns revolve around whether the cancer will recur. In the palliative setting, unknowns exist everywhere: to treat or not to treat, what treatment, when to switch therapies, when to stop chemotherapy, how to tell friends and family about the incurable nature of the cancer, how to talk to loved ones about death, etc, etc, etc. It all can be overwhelming.
It is interesting to me that Carole’s “struggle” with Uncertainly was so easily reframed over the course of her cancer journey – from a full-on brawl to hard fought arm wrestles, then respectful handshakes, and finally welcoming hugs. At the beginning of her treatment, each minor decision to be made was so very difficult and strained with angst. Over time, though Carole’s decisions undoubtedly became more dire, Uncertainty was there as a reliable companion. Carole seemed to thrive in Uncertainty’s presence. Uncertainty was a constant that came with her to each appointment. Carole adapted and took Uncertainty under her wing to be nurtured with a kindness that in turn revealed such lovely self-compassion.
Over the 18 months that I treated Carole with her incurable cancer, she and her husband and I, along with Uncertainty, navigated decisions together. I felt like the four of us had a wonderful partnership in our discussions about chemotherapy, quality versus quantity of life, and her treatment versus life plans. Carole looked to me for explanation; I looked to her for understanding. She looked to me for knowledge; I looked to her for learning. She looked to me for recommendations on treatment; I looked to her for her wishes. Uncertainly was there with us the entire time. Uncertainty watched over us. Uncertainly even fooled us a few times when an unexpected side effect would crop up or when her cancer didn’t do what it was supposed to do.
By the end of her life, Carole embraced Uncertainty fully, as if it was long lost relative coming home after years in exile. Yes, there was anxiety attached to her friend Uncertainty. Of course, there often is in her life circumstance. But she navigated this so well by befriending what many might think an enemy.
This friendship was a beautiful thing to be part of.
Author Notes:
When I was a kid, I used to love reading those fun little books in which the story would get to a certain page and the reader then had to choose which path to go down . . . if you want Jenn to walk through the haunted house’s creaky front door covered in cobwebs to investigate the disappearance of Jigger the Newfiepoo dog, go to page 74; if you think Jenn should turn around and meet her friends for mint chocolate chip ice cream in a sugar cone, turn to page 36. Sometimes I struggle to decide which page to flip to. Who doesn’t want ice cream?! But man oh man, there is something to be said for being brave enough to enter a haunted house all alone to find your adorable puppy. Enter Uncertainty.
Uncertainty is defined by the Merriam-Webster Dictionary as: not known beyond doubt; not having certain knowledge; not clearly identified or defined.
As a doctor, I am trained to make certain decisions. It’s my job to use evidence and be as decisive as I can be with my patients. Most of the time I can do this at work. Sometimes though, there is no best answer but that which my patient decides upon. That is still certainty to me as it is certain that Uncertainty belongs to my patients.
Outside of work, it is often difficult for me to embrace Uncertainty. Uncertainty and I are probably somewhere between an arm wrestle and handshake much of the time. I am trying to improve on this when opportunity presents itself so that I can become a little more flexible and a lot more accepting of living life on life’s terms.
The best part about my childhood books is that they allowed for as many do-overs as possible. I read those books over and over again, until the last possible combination of pages was discovered. In real life, there aren’t do-overs. Uncertainty comes in the moments when I don’t know what the right or wrong and good or bad decisions are. A lot of the time, I don’t even know what right or wrong or good and bad means. As an example, I’ve recently had an experience that I thought might be one of the worst in my life turn out to be one of the best things to come my way. The result of an event that I thought was so terrible has brought me so much more happiness and joy than I could have ever fathomed. I didn’t know that at the time it was all unfolding though.
The thing is, we can only ever go down one path at a time and will never know what might have happened if a different path was chosen. Uncertainty can be dark and brilliant at the same time. What page will you turn to?
In life, we must choose. I will continue to try to choose wisely when Uncertainty shows up in my day – with kindness, with a head held high, and with as open heart as I can muster. This is a lesson taught to me, in part, by Carole. I thank her for this.
I am curious to know how what relationship you have with Uncertainty. Are you friends or foes with Uncertainty? Do you work together with Uncertainty toward acceptance? Or do you resist Uncertainty with fists tight and teeth clenched?
