 Fighting cancer is much like fighting a war. As Sun Tzu states in Art of War, understanding yourself and the enemy will greatly increase the chance for victory. As a fellow in oncology, I have been uniquely primed for the war on cancer. I know the enemy well. However, when a loved one was diagnosed with end-stage cancer, I found I still had much to learn.

Acting as a primary caregiver, and taking a stance from the patient’s angle, taught me more about treating patients with cancer than all of my combined years of medical training.

Despite my medical knowledge and dedication, we ultimately lost our battle, but the war on cancer remains. I hope to take my lessons forward for the benefit of my patients and their families. Having gained perspective from the patient’s point of view, I am now a different doctor.

It is of the utmost importance when fighting cancer that patients have an understanding of their disease and undergo self-reflection while still maintaining a positive mental attitude. We cannot always prevent death, but we may prepare our patients so they are equipped to face it without fear.

Perhaps the most profound lesson learned from my experience was the importance of instilling hope. It is a difficult challenge balancing this essential element with the medical statistics or “realities” of cancer. We must be aware of the truth, but also understand that each case is different.

Fear can be destructive to a patient’s healing process, and can be overwhelming to the patient’s family. In any survival situation, it is vital for a person to have hope. The balance of educating the patient about their opponent, while simultaneously laying the foundation for hope, is a delicate one. Even the masters seem to struggle from time to time. It is now clear to me that this is where the true art of oncology lies.

Every doctor will approach the challenge in a different way, and unfortunately this is an area of discussion that is lacking in medical education. During our medical training, we must take it upon ourselves to master some of the difficult psychosocial challenges as well as the educational ones.

Healthcare is so much bigger than any particular disease. The average person does not interact with healthcare providers enough to consider it a familiar part of life. The simple act of going to see a doctor can be somewhat unnerving and even the best healthcare systems are often frustrating in some way.

We must remember that the patient has more to deal with than just treatment. Many long-term disabilities force patients to also learn a very complex healthcare program, and system inefficiencies add greatly to the stress of patients and their families. It is essential for all healthcare providers, including doctors, nurses, pharmacists, and social workers, to coordinate their efforts in empowering the patient. The healthcare environment must facilitate efficiency and communication.

Many aspects of healing are overwhelming to patients, and one that certainly tops the list is medication. With just about every prescribed medication having a laundry list of side effects, a patient can easily shy away from a medication, or take it improperly, if he or she does not understand how it fits into the larger plan of healing.

As with training a person on anything new, a cycle which includes education, reinforcement, and additional education will serve the patient well and lead to better symptom control, fewer hospital admissions, and better overall outcomes. For example, a high school math teacher is not evaluated on how well he or she knows math, but how well he or she is able to empower students to learn it. In comparison, our ultimate goal is to have the patient leave the facility with a full understanding of treatment techniques and engage in the prescribed method. This is a very large task, evolving emotional coaching as well as education.

There are times when a disease progresses regardless of treatment, or evolves at an unanticipated rate. Patients can easily experience out-of-control type feelings and seek new ways to establish order in their lives. Feelings of helplessness often set in and this can manifest in small acts of defiance. Refusing to eat as suggested, or refusal to take medications, may be the only factor a patient feels he or she can still control. Although the patient may still truly want to do their best to heal, the need to have some control overtakes rational thought. Frustration from the family or medical staff is futile. We must avoid trying to make the patient do what is prescribed, and instead enable them to be a part of the decisionmaking process. There is an art to the gentle empowerment of a patient, and a practitioner who masters this art serves his or her patient well.

Caregivers and practitioners often have their own idea of how the patient’s story will unfold. It should be recognized that the patient is the ultimate director of this. Each patient will have his or her own unique course, and this is particularly apparent when an end-of-life situation is nearing. The process of dying is as individual as we are from one another. Communication and recognition of non-verbal cues are essential during this time. It is important to identify agendas that may be caregiver driven and not reflective of a patient’s goals. End-of-life care requires guidance and skill in listening to the patient fully and allowing them to largely guide the transition.

In conclusion, a vast knowledge of both your opponent and oneself is essential in the battle of cancer. As medical oncologists, we must be intelligent and stealthy in our attack while arming our patients with education and empowerment to heal. However, we must not lose sight of the fundamental element of survival, hope. We will be called upon to fight utilizing tools of our minds, but most importantly, our hearts. Inspiring the patient to live courageously or die gracefully is an undeniable aspect of our field. As future oncologists, we will be faced with many challenges in patient care, and tailoring our art will undoubtedly require a lifetime. To be victorious, we must work to know our enemy, as well as ourselves.

Articles

Fighting cancer is much like fighting a war. As Sun Tzu states in Art of War, understanding yourself and the enemy will greatly increase the chance for victory.

Lessons on Treating Cancer: A Caregiver's Perspective

 Although the ever-expanding list of targeted drugs, the complexity of molecular pathways and genetic composition of cancer, and the seemingly relentless stack of evidence-based trials are daunting, the toughest yet most important lesson to me so far is to realize when doing everything is not warranted, necessary, desired, or feasible. It is important to understand when the odds have won, to know when to stop fighting the cancer, to know when to shift hope toward something different. This realization can liberate you, the practitioner, but much more importantly, can be liberating to your patient and their family as well.

I carry around the quote “We cannot do everything, and there is a sense of liberation in realizing that,” by Archbishop Oscar Romero, in my bag, and resort to these words when I feel like I have to do more for the patient but can’t. These words carry much meaning in the life of an oncology fellow.

The diagnosis of cancer rocks a person’s livelihood. The independence, control, and balance one may have had in life before a cancer diagnosis quickly gets maligned. Giving control back to a patient is sometimes the most necessary and most beautiful thing you can do for someone. By advising a patient not to come in for lab testing, a transfusion, a doctor’s visit, or chemotherapy, you are freeing them both physically and mentally. Now don’t get me wrong here. If cure is truly an option, the patient just has to bear down and deal with it for a while. But in other situations, when the cancer has spread out of control, oftentimes that mimics the patient’s life too. Consumed by healthcare-related appointments, there is no time for fun, relaxation, travel, or family.

I learned this important lesson while caring for one of my young female metastatic sarcoma patients. To reduce the tumor burden in her lungs, I was going to treat her with intense inpatient chemotherapy. Physically, this would take my patient away from her 4 children for a longer period of time, and would exhaust her. I was going to make her pain free with ever-increasing doses of opioids, but mentally, this was too sedating and did not make sense. Instead, I realized that helping her maintain balance in her life was by far the most important thing I could do to help her. This was achieved only when I was able to realize that less was more, and think of my patient as a loving mother, caring wife, and wonderful friend, rather than as a patient with cancer.

This patient has been able to spend true quality time with her friends and family. She is liberated by doing less, and in the meantime, she has liberated my thought process as well.

The relationships formed in an oncology clinic are unlike anything. It is the best of times and the worst of times. There are hugs of joy and hugs of sorrow, tears of happiness and tears of utter disappointment. Because these bonds form quickly, the desire to do everything for a patient is strong. Over time, as you understand more about your patient, you realize what is truly important for that person, and it often doesn’t necessarily mean ridding him or her of the cancer. We cannot do everything, and that can be a blessing for all parties. It just takes a while to understand that.

Although the ever-expanding list of targeted drugs, and the seemingly relentless stack of evidence-based trials are daunting, the toughest yet most important lesson to me so far is to realize when doing everything is not warranted, necessary, desired, or feasible.

Focusing on Your Patient's Needs

A screeching sound comes from the swing as my kids are swinging, cars in the distance make their rumbling noises, children playing at the park are squealing in delight. Eventually, a plane landing over our heads overpowers it all. It is an early evening on a nice summer day. A warm breeze is blowing, and the pleasant smell of lilacs lingers over us. However, my mind is somewhere else, unaware of my beautiful surroundings.

It is back at the hospital with a consult patient who has a platelet count of 2000.

I think to myself, Did I do everything right, will she be OK overnight? It quickly wanders to the patient with marantic endocarditis, extensive thromboembolic events, and now, new hemorrhagic cerebrovascular accidents. He is unlikely to get through the night; I did not get a chance to say goodbye. A young patient with persistent fevers and lymphadenopathy comes to my mind; I hope it’s rheumatologic and not lymphoma…

My kid screaming “Higher, higher mommy,” brings me back to reality. As I push the swing harder, I become aware of the lovely environment that surrounds me, the smell of lilacs in the air, and my kids with their playful faces as they swing higher and higher. Even the horrendous screeching sound from the swing doesn’t bother me today. I start to appreciate the happy, peaceful moment. I try not to let my mind wander back to the dark hallways of the hospital.

Beginning fellowship with a 2-year-old son and a 1-month-old daughter was extremely anxiety provoking. My husband would joke with me, in hopes that a protective layer of sarcasm would make my insomnia disappear. My husband would say, “You know, you will be just fine.”

Now, more than halfway through my fellowship experience, I know I am fine. However, I am still juggling tasks as I try to balance my life at home and life at work. Who will babysit tomorrow night when the nanny leaves but we have to work late; whose turn is it now: my mother, mother-in-law, sister? I’ve realized that raising my kids is a whole-family endeavor. Certainly, I could not make ends meet without them.

As my daughter, Alexandra, began to speak, she referred to her nanny as “Mommy.” I was devastated. I wondered if she thought I was an occasional visitor at home who comes to play with her at night but then leaves in the morning before she’s awake. My son, Adam, would try to make me feel better by saying, “Mommy, she’s just saying this because she misses you.” When Alexandra does wake up early enough, before I depart for work, she does not leave my side.

My heart melts as I watch her enormous tears trickle down her cheeks in an attempt to stop me from leaving. Adam attempts to reason with her by saying, “Mommy has to go help the sick at the hospital, and daddy has to go to work to make money for our toys.” Alexandra stands for a minute and thinks about what he’s said, and then bursts out crying, as she tries to have her way-her real mommy at home with her.

After the swinging and sliding at the park we finally head home. Both Alexandra and Adam want to watch a cartoon during dinner. I am too tired to argue, and too tired to teach, for the millionth time, the proper table etiquette. I place the iPad on the table, and we eat dinner and enjoy good-old-silly Tom and Jerry. Bath time goes fairly smoothly, and as always, is filled with fun and splashing for my children but frustration for me.

Finally, bedtime…As I sit on the beanbag chair in the middle of the room, I doze off before Alexandra and Adam do, and my bedtime story turns into work-related random words, thoughts, and conversations.

Adam wakes me up. “Mom, that’s not how the story goes, tell us the right one,” he says. When they’re finally asleep I feel exhausted. I’m glad to see my husband has cleaned up after dinner. I can get ready for bed…But wait, what about my reading list, my manuscript revision, and looking up my patients for clinic tomorrow? As I lay in bed, I decide I’m too tired. These things just have to wait until the morning.

During work on the following day, I am angry with myself for not looking up my patients before clinic. I am so far behind. I thought I promised myself I would always be prepared… After clinic I have a research meeting. Should I cancel it? I did not make the necessary changes to the manuscript… No, I’m a professional. I will not cancel last minute… The meeting turns out to be quite fruitful. I will submit this project as an abstract at ASH prior to full publication. Great… add “prepare a poster presentation” to my long to-do list.

In the midst of my day, I receive 3 new consults. Since I don’t have a resident with me this week I will have to see each of them by myself. So much for going home early today… I’m glad kids are rather forgiving. These consults are not as straightforward as I’d wished. With my attending we take our time, work on their needs one by one, investigate the peripheral smear, arrange for plasmapharesis, and contemplate whether we’re dealing with TTP or aHUS. Have to add these to my reading list.

Finally, after a full day, I’m excited to head home. When I arrive home, 2 happy smiling faces come running to me. They are not angry that I’m late, but simply excited to see me. I hold Alexandra and Adam close, kiss them dearly, and wish to never be away again. My worries, to-do list, and stress instantly disappear from my mind. I feel liberated. I am filled with love and happiness. This is how I feel every evening when I realize what is most important in my life. I love my profession, I enjoy building my career, and continuously feel challenged by my field, but above all, I am a mother. The unconditional love from my children goes beyond any achievement at work.

After the same park, dinner, bath, and bed routine, I feel exhausted but gather up enough energy to edit the manuscript late through the night. Given the time on my clock, I am too embarrassed to e-mail it out to my attending. I’ll e-mail it tomorrow morning.

In bed I think to myself, Is this what work-life balance is supposed to be like? If so, it is very tiring... Transiently, my long-ignored reading list comes to mind but I’m too tired to dwell on it and quickly doze off into deep sleep. When I wake up the following morning, I feel accomplished. I sneak out quietly, to not wake up Alexandra and Adam.

August 2013 | Oncology Fellows

Lessons on Treating Cancer: A Caregiver's Perspective

Focusing on Your Patient's Needs

Mom-Doctor Versus Doctor-Mom