The Real Story: It’s in the Journal

Polly Mazanec, Ph.D., ACNP, FPCN,1 Maureen A. Klinc, R.N., O.C.N.,2

and Elizabeth Ford Pitorak, M.S.N., FPCN3

‘‘You can’t judge a book by its cover.’’ We were remindedof this old saying as we looked back on nearly 2 years

of caring for Mrs. P., a 63-year-old woman diagnosed withstage III nonsmall cell lung cancer who came to our compre-hensive cancer center for the latest in treatment options. Shewas a very strong woman who found meaning in her life aswife, mother, and grandmother, telling us stories of bakingand food preparation for holiday celebrations, maintaining aspotlessly clean house, and trying new restaurants with herhusband and friends.

We had the privilege of caring for Mrs. P. and supportingher husband through the difficult course of cancer carefrom diagnosis until she died. She always came to herappointments smiling, dressed in her finest outfits, withmeticulous makeup and styled wig, despite an exhausting2-hour drive from her home 90 miles away. When asked howshe was doing, she always responded ‘‘Oh, I’m, fine; I’m okey-dokey.’’ On occasion she would say, ‘‘I am a little queasy’’ or‘‘I have a little ache here or there’’ but would always end herstatements with, ‘‘Oh, its nothing, I’m fine.’’ When encour-aged to expand on her little aches or queasiness, she mini-mized her symptoms, and was reluctant to take medicationsbecause her ‘‘symptoms were not that bad.’’ Our team workedto try to alleviate reported symptoms but also recognized herneed to have control over her experience.

During 2 years of care, she participated in three clinicaltrials, received a variety of chemotherapeutic agents, andwhole-brain irradiation for brain metastases. In the clinic, shefaced disease progression and treatment changes with a smileand a positive outlook, but her husband shared his worryabout recurrence with us, always hoping something newwould come along so that his wife would be cured. Hestruggled with the roller coaster of CT scan results, sometimesshowing stable disease, and other times identifying diseaseprogression, while Mrs. P. appeared totally in control of heremotions.

It was not until 2 years after her death, when her belovedhusband came to visit and to share her journals with us, thatwe really knew Mrs. P.’s true cancer experience. The oncolo-gist, oncology nurse, and palliative care team were very in-volved in her care, but only saw the picture Mrs. P. painted forus—one of a very stylish, sharp woman, taking control of adifficult situation, enjoying life despite a ‘‘few little aches and

pains,’’ and anxious to receive any treatment that might pro-long her survival.

Her daily journal, however, told the story of a womansuffering with poorly controlled pain, nausea, aching legs,and overwhelming fatigue. Her quality of life was severelyaffected by the nausea, limiting her ability to enjoy her love offood, the pain that drained her energy and interfered with hersleeping, and the fatigue that prevented her from her usual‘‘spring and fall cleaning’’ and ‘‘cookie baking.’’ She wroteabout feeling ‘‘down-in-the-dumps’’ and reported that ‘‘I’mnot jolly at all,’’ describing symptoms of depression that wenever knew. She recorded her fears and worries in her diaryand recorded her thoughts and feelings every day. She hadprotected her family and loved ones from worry all her lifeand throughout the disease trajectory, she continued her roleas protector, of her husband, family, and even of the cancerteam, writing, ‘‘I did not tell them how I was feeling,’’ or whenshe learned of progression she wrote, ‘‘I feel like I have leteveryone down, family, friends, and staff at the hospital—willtry to make it easier on everyone.’’

Now, 4 years after her death, many questions remain un-answered. Her physical symptoms of pain, nausea, and fa-tigue were poorly controlled, her psychological well-beingwas threatened by mood changes, and her social well-beingwas severely affected by the physical symptoms that limitedher ability to cook, bake, and enjoy the company of family andfriends. She privately turned to God to help her through thejourney, writing, ‘‘We need help from above.’’ What could wehave done differently to identify and address her fears andconcerns that she described only in her journal? Did fears ofher losing control, of having chemotherapy withdrawn if shereported the severity of her symptoms, or of her desire toprotect her family and health care team from worry influenceher decision to minimize these terrible symptoms and to takeonly acetaminophen for pain for many months?

Having read and re-read her journal entries, we havestruggled with the fact that what we perceived to be hercancer experience was not her reality. By respecting her desirefor autonomy and control, we may have lost opportunities toimprove her pain, symptoms, and quality of life. How manyothers that we are caring for are suffering in silence?

There are a number of lessons we have learned from Mrs. P.’sjournal. (1) One cannot always judge the book by its cover and

1FPB School of Nursing, Case Western Reserve University, Cleveland, Ohio.2University Hospitals Case Medical Center, Ireland Cancer Center, Cleveland, Ohio.3Hospice of the Western Reserve, Cleveland, Ohio.

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what we perceive may not be the real experience. (2) Clinic visitsare only a brief moment in time compared to the hours, days,and weeks between visits. We often do not know what theexperience is in the home if we rely on the snapshot of the clinicvisit to guide our understanding of how patients and familiesare really doing. It may be helpful to offer home palliative careto patients, so that the true reality of the cancer journey, ratherthan the clinic reality, may have an opportunity to surface. (3)Patients paint the picture they want us to see, and sometimesthey do not want us to see them as vulnerable and out of con-trol. (4) As an interdisciplinary team, we work hard to helppatients deal with the challenges of facing and living with

cancer. We must continue to try to alleviate unnecessarysuffering, but be willing to accept that some things cannot befixed.

Address correspondence to:Polly Mazanec, Ph.D., ACNP, FPCN

FPB School of NursingCase Western Reserve University

10900 Euclid AvenueCleveland, OH 44106-4904

E-mail: pmm@case.edu

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