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JCO's Cancer Stories: The Art of Oncology podcast series consists of author interviews and readings of the section’s content. This platform provides authors with the opportunity to comment on their work, offers better accessibility for readers, and stimulates more conversations. Art of Oncology publishes personal essays, reflections, and opinions in the Journal of Clinical Oncology, giving our readers a chance to reflect on important aspects of practice and help shape our professional discourse. We hope you enjoy listening to these thought-provoking stories.

 

Dr. Lidia Schapira

Cancer Stories is hosted by Dr. Lidia Schapira, MD, FASCO.

Dr. Schapira is the Associate editor for JCO’s Art of Oncology. She is a Professor of Medicine at Stanford University School of Medicine where she serves as the Director of the Cancer Survivorship Program. 

All guests on ASCO podcasts agree to provide evidence-based information to our listeners. Guests agree to provide objective commentary free from commercial bias, and they agree to respect patient privacy. Conflict of Interest disclosures in connection with the content of the podcast will be provided with each episode.

 

 

Disclaimer:

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. Guests' statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

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Nov 27, 2019

A daughter considers the differences in being a supportive family member rather than a primary caregiver.

TRANSCRIPT

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

Welcome to JCO's "Cancer Stories, the Art of Oncology," brought to you by the ASCO Podcast Network, a collection of nine programs covering a range of educational and scientific content and offering enriching insight into the world of cancer care. You can find all of the shows including this one at podcast.asco.org.

The cattle don't care. Stephanie L. Graff, MD. The silence is filled by the sound of a long, slow Midwestern freight train rumbling past. The sounds reverberate off the brick buildings that line the parking lot of the Save A Lot grocery store.

I'm in the front seat of my father's Ford pickup truck. I close my eyes and breathe in the smell that has long penetrated everything about my father-- paper feed sacks dusted with ground corn, manure and dander from our cattle, and machine oil.

His words are circling around my mind as I try desperately to remember everything I learned in anatomy, physiology, and pharmacology. He said it is just some high blood and chronic leukemia. He says they just found it in his blood but that he feels fine so the damn doctors are probably wrong.

If he is asymptomatic, it is probably early, right? Chronic leukemia is one you can live with for years, right? He's only 71 years old. He still farms full time and owns a general contracting business that constructs steel buildings around the Missouri River Valley.

He'll be fine. He has to be. The financial situation of a Midwestern farmer is too tenuous for illness.

I snap from my reverie as he hands me copies of his laboratory work and says, now you can't tell your mother. She doesn't know. Then he opens the truck door and heads into the grocery store. The conversation is over.

My father lost his hearing during his time in the reserves. When he came home in his early 20s with significantly damaged hearing, he went to see a doctor. It has never been clear to me what kind of doctor he saw.

Was it a primary physician, an audiologist, or a specialist? I'll never know. He won't talk about it. The doctor told my 20 something year old father that the nerves that stimulated the teeth and ears are the same so if he wanted to get his hearing back, he would have to pull all his teeth to stimulate the nerves.

The doctor referred him to a dentist who happily pulled a full mouth of completely healthy teeth to save my father's hearing. Needless to say, it didn't work. At age 20 something, my father was deaf and wearing dentures. Doctors have been damn doctors ever since. When questioned about his deafness, he often replies, the cattle don't care.

At the age of 21, I was home for medical school to live with my parents and do a month of rural medicine, a routine part of the curriculum in my Midwestern school. I know the only reason my father shared this diagnosis with me is that he assumed that his doctor, who was my preceptor for the next month, will tell me if he doesn't.

It is an unfounded assumption. My preceptor is a consummate professional. And over decades as a small town doctor, he has learned to respect the privacy of the community.

Dad climbs back into the truck. The small pickup bounces and rebounds with his weight as he climbs in. He puts the truck in reverse and pulls out of the parking lot without bothering to latch the seat belt that I have never seen him use.

I thumbed through the laboratory results I just remember I am holding. Elevated glucose, slightly abnormal lipids, and normal hemoglobin and platelet count. The WBC count is 87,000, predominantly lymphocytes.

I glance at the clock and mentally start the countdown until I get to the city library-- my family home does not have internet-- to look up everything I can on chronic lymphocytic leukemia, CLL. But first I will be helping to complete all the farm chores. I breathe in the smell of my father again.

Years pass by. My research that day reinforced the positive message I vaguely held from my early medical education. Over the years, two truths became apparent to me. First, my dad's CLL was not an aggressive or rapidly progressive type. Second, my father truly didn't believe he had the disease.

During my residency years, he was hospitalized with sepsis from a farming wound. I sat in the bedside chair while he explained to the hospitalist that he just had a touch of anemia. My mother had already proudly explained to the hospitalist that their daughter was a doctor too, all but giving out copies of my diploma.

The hospitalist raised his eyes to meet mine and I just shrugged. Trying to scream talk to my deaf father and explain the nuances of his hematologic condition while he's hospitalized with a far more pressing health issue doesn't seem like the best strategy. Plus my mother is still in the room. And I am sworn to keep Dad's CLL secret.

I have suspected for a year or so that Mom knows, but she has never asked me directly so I am never forced to make the decision about moving from my life of omission to either an outright lie to my mother or a betrayal of my father.

When the hospitalist left the room, my father handed me a handwritten note. I unfolded it, expecting it to reveal something about his CLL and the doctor or my mother. Instead, he has handed me a list of farming chores that need to be completed. The cattle don't care I'm in here. Still need to be fed. His singular focus is simultaneously irritating and endearing.

My father is now in his 80s. Though I only live three hours away from home, I rarely see him or my mother. My mother doesn't like to drive alone. She worries about her eyesight.

My father can't bear to be away from the cattle overnight. The rhythm of farm life seems to function like a pacemaker for him. Plant harvest, lub dub, seed water, lub dub, build repair, lub dub. He is as fiercely independent at age 80 as he was at age 30.

My father hates asking my brother who farms alongside him to help him with farming tasks like fence repairs or feeding the cattle. They each have their own tasks and responsibilities and neither would ever burden the other. They have an unspoken rhythm moving around the farm chores, separate but vital responsibilities. Systole, diastole, lub dub.

My physician husband and I spent much of our Christmas visit whispering about how much weight and muscle mass my father had lost in the six months since we had last seen him. My brother pulled me aside to complain of how not right dad had been lately. My mother complained about how he falls asleep on the couch every night with the TV blaring.

I probed as much as is possible with a patient who doesn't want to open up. How have you been feeling? Are you still getting around OK after your knee replacement? How are things going with work down on the farm? Are you still eating fish for lunch every day?

I get a series of grunts and nods, answers that don't correlate with my questions. He can't hear me. Even with my scream talking, he is confabulating because he doesn't hear the questions. The only chief complaint I can elicit from my aging father is that it is getting dark already and he needs to get back to the cattle.

By early January, my mother is calling with stories of dad's abdominal pain. She thinks he has a hernia but she isn't able to answer my questions of a hernia where. My brother calls to tell me something is really wrong with dad's belly, that he isn't able to farm, is in a foul mood, and has been seen doubling over in pain. Did it occur to me? Nope.

I am a board certified medical oncologist and hematologist. My 80 something year old father has unspecified abdominal pain, fatigue, weight loss, sarcopenia, and a 10-year-old CLL diagnosis. Do I even for a second think, oh, splenomegaly, his CLL is acting up? Nope.

Hearing my family try to explain their medical symptoms bends my mind in knots. My parents will confuse medical jargon, downplay symptoms, omit critical details, and elaborately describe incidental findings, all of which makes it hard to find the medical truth. In my father's case, I have attributed it to his eighth grade education and the stoic, no complaint, German heritage farmer mentality so I gave up long ago.

I remember the moment years ago that led me to stop trying to interpret their medical issues. My mother called me. She said, "Stephanie, I didn't want you to worry but I had a colostomy. I just had my follow up appointment and everything is OK so I thought I would call and let you know now."

I screech in panic into the phone. A colostomy. What? Why? My mother calmly chides me. Well, you know, because of my brother Stanley. My uncle had died of metastatic colon cancer when I was still in high school. At the time, my uncle's death had rocked me to my core with the idea that my parents were not immortal.

But Mom, that isn't really a reason to have a colostomy. Sure it is, she responds. They recommend it at 50. You know that. Anyway, it all turned out OK. It was clean. Just a few A-D-E-N-O-M-A-T-O-U-S polyps.

She spells the word for me. Even over the phone, I can tell that she had dutifully asked her physician to write it down so that she could report back to me accurately. I sigh with relief. "Mom, do you mean you had a colonoscopy, like a doctor looked with a scope inside your bowels, or a colostomy like you have a bag outside your body to collect your stool?"

I can hear her getting annoyed with me. "Like I said, Stephanie, I had a colostomy. They just checked me. Why do you always have to be so critical?" After that, I let it go.

My parents are adults. They are never going to lean on me for medical advice. They value independence and privacy. They do not like to make others worry or fuss over them. This is just how it is going to be.

After relentless harassment from my mother, Dad acquiesces and goes to his primary doctor. His spleen is three times the upper limit of normal. He has lost about 30 pounds. And both his RBCs and platelets have plummeted. They consult with his oncologist. And to my surprise, my father agrees to do the chemotherapy that the damn doctor recommended.

My mother, who slides through the process smoothly, the only telltale sign that she's always known the diagnosis, calls me and spells out the chemotherapy drugs. I ask whether she has questions that I can answer. She doesn't.

My phone call with dad is tedious. I'm yelling into the receiver louder and louder. No, he does not have questions. No, he does not want me to come down. He will be fine. He understands it all. He importantly exclaims that he was able to arrange the treatment late enough in the day that he can still get all his work done on the farm with the cattle before driving into the city for treatment.

I chat with my mom off and on leading into that first treatment. I can tell she is scared, not of the disease or the treatment but of the unknown. Her questions are metaphysical, not medical. For reasons that are unclear to me, she tells my father's oncologist that I want to talk to him and gives him my cell phone number.

Given our established pattern wherein my parents conceal their health issues until they can be assured it is nothing bad, I did not even imagine that they would be comfortable with me talking to dad's damn doctor, oncologist to oncologist.

He calls and I don't really have any questions. The broken reports I get from my parents are pretty clear. I have no doubts about his choice of treatment. Dad's oncologist and I end up chatting about some clinical research I am doing.

As we end the call, he says, you know, your father is really hard of hearing. It makes it hard to take care of him. Have you ever talked to him about hearing aids? I laugh out loud. And I'm still laughing days later.

Yes, I explain, we have had conversations about hearing aids. By the time he consented to talk to a damn doctor about his hearing, it was beyond the point that hearing aids would help. But I calmly reassure my father's oncologist that the cattle don't seem to mind in the least.

The first crisis hits when my father is asked to schedule a second cycle of chemotherapy prior to leaving the oncology clinic after completing cycle one. He doesn't hear any of the interaction. So when my mom hands him the follow up on an appointment card in the parking lot, he explodes.

Why would he ever need to go back? He already did his treatment. It should be better now. He feels fine. Damn doctors. My mom calls me crying in fear, and anger, and frustration. Can I talk to him? I remind mom what it must be like to undergo cancer treatments without being able to hear about them.

When I call, he is calm back on the farm. He tells me he doesn't know why mom called or involved me. He will do whatever the damn doctors say. So instead we talk about farming, weather, and if he will be able to get the fields planted.

The experience of being a supportive family member rather than a primary caregiver or physician in charge has opened my eyes to two fundamental truths. First, every patient has a central identity that is unchangeable. My father is a farmer. Nothing is going to mess with that. Chemotherapy or not, he has cattle to tend and fields to plant.

Second, barriers can be invisible from either side. While physicians are sometimes blind to barriers like transportation, literacy, food insecurity, and financial concerns, patients can be blind to barriers within their interactions with the health care system.

My father is deaf. It doesn't seem to bother him. He isn't going to read printed material. He won't take any other steps to overcome a barrier he doesn't see. Caregivers like my mother, dutifully writing down appointments and putting her phone number in the patient phone number blank on forms, allow invisible barriers to go unnoticed.

Dad has laboratory work done at our rural community hospital. And his big city oncologist is able to review them without an extra trip. The morning before the second cycle of chemotherapy, he has his laboratory work completed and heads to the farm.

The clinic has been calling my mom with everything. Screaming at my dad through the phone is not ideal. Her phone rings around noon. The nurse explains that my dad won't be able to receive his second cycle of chemotherapy tomorrow. He is N-E-U-T-R-O-P-E-N-I-C.

That means he might get sick and the chemo is working, my mom explains to me. That nurse was so nice. She talked me through these precautions. She said that dad needs to stay clean-- I wrote that down for him-- and about cooking food and checking his temperature. "She spent at least 30 minutes with me on the phone, Stephanie. So nice."

My mom teaches me everything she learned about neutropenic precautions while I try to stuff in my lunch during my own busy oncology clinic. So when she was done telling me about all that stuff, I asked her what we needed to do about the cows to be safe. I don't think she really knew. She kind of stammered a bit. What do you tell your patients about cattle?

I take a deep breath. And I can smell the essence of my father. On a farm 200 miles away, my 80-year-old father is living his best life surrounded by his fields and his cattle with an absolute neutrophil count of zero. I smile into the phone and respond, oh mom, the cattle don't care.

[MUSIC PLAYING]

I'm Lidia Schapira, editorial consultant for JCO's Art of Oncology, and the host of "Cancer Stories, the Art of Oncology" podcast. With me today is Dr. Stephanie Graff. Dr. Graff is the director of the breast oncology program at Sarah Cannon Cancer Institute in Kansas City and the author of "The Cattle Don't Care." Welcome to the program, Stephanie.

[Dr. Graff]

Thanks, I'm excited to be here today.

[Dr. Schapira]

We loved your essay. And before we start talking about the essay and the message, tell me a little bit about your writing. Have you always been a writer?

[Dr. Graff]

Yeah. I actually really fell in love with writing even in grade school and middle school and always entertained the possibility of a career in English literature. And so it's always been something that I turn to to deal with being an oncologist and the emotional weight of our career sometimes. And it's always been a really powerful form of expression for me.

[Dr. Schapira]

Fantastic. So writers usually love to read. What is on your night table now?

[Dr. Graff]

Well, right now I am reading a book called "Inheritance" by Dani Shapiro, which is about how basically doing an ancestry panel completely upended her identity. And it's fascinating.

And I just finished "Between the World and Me" by Ta-Nehisi Coates, which was fantastic. "Ordinary Grace" before that by William Kent Kruger. Yeah. I've got a pretty diverse reading list. And I love to read.

[Dr. Schapira]

And when do you find time to read?

[Dr. Graff]

I do a fair amount of Audible while I'm commuting back and forth to the hospital. But it is my unwinding at night strategy so I tend to read a few chapters every night before bed, not only to myself but to my kids as well. So lots of reading in the Graff house at night.

[Dr. Schapira]

That sounds wonderful. And what are you reading to or with your kids?

[Dr. Graff]

So my oldest and I are just reading "James and the Giant Peach" and we finished "The Phantom Tollbooth" before that, so just reading through some children's classics and having a really great time doing that.

[Dr. Schapira]

That's wonderful. So let's turn our attention to the story of your dad. Your dad, his deafness, his leukemia. It's so interesting because it's so dramatic and yet there is no drama. It's funny. And that makes it so incredibly amazing. How did you put this all together?

[Dr. Graff]

You know, it's just really my life actually. My parents are fantastic people. They're very stereotypical Midwestern farmer salt of the earth people. And I am proud to be their child and to have been raised with them. But they really are very amusing now as an adult and a physician to sort of interact with this just in their perception of what's happening with their health care and the way that they open up to me at seemingly random times about what's going on.

Watching my dad's experience going through treatment for this diagnosis of the CLL of progressing has just been really interesting to watch. And I've been experiencing life as a caregiver rather than as a physician or a patient myself and trying to find wisdom in those moments of interaction with my parents.

[Dr. Schapira]

So take us to the beginning of the story. You're 21 years old. You're a medical student visiting your parents. And your dad just gives you these lab tests while he's going into the grocery store. Take us to that moment and tell us how you felt.

[Dr. Graff]

I was still pretty early in my medical school career at that point. And I pretty early on had an interest in oncology. That information had seemed to stick a little earlier. So when my dad told me that he had high blood and handed me the stack of paperwork, and I started flipping through it and saw the lymphocyte count was markedly elevated, I pretty instantly thought, OK, it's just CLL so chances are it's going to turn out great and everything's going to be fine.

But I was a little flabbergasted at trying to figure out what it was that he wanted. Was he telling me because he wanted advice? Was he telling me because now as an adult child he wanted to start including me in these discussions and decisions more?

Was he telling me this because, again, I think he was worried that the primary care doctor I was shadowing on this preceptor rural medicine month would tell me if he didn't. And I don't think he wanted to be outed by someone else for this diagnosis. And so part of it was maybe pride in him telling me first.

And so I think my reaction in the moment was just sort of shock and confusion. He hadn't really been transparent with me about health care issues in the past. And it made it difficult for me to even figure out how to respond much less then grapple with what that meant medically.

[Dr. Schapira]

That's so interesting. I imagine it must have influenced you in some way as you approached your career in medicine and took your first steps from student to a doctor. And then you bring the reader again to another scene where your dad is hospitalized for sepsis some years later.

And there you are now during your residency. And you think then there is that he's bringing you into the conversation and finally hands you a note. And you think this is going to be some deep thought. And what he really is giving you is a list of farm chores that need to be completed. Tell us a little bit about that scene.

At that hospital stay, my dad and mom had both thought that I didn't need to come down to see him, that he was fine, and that it was just sepsis. And they were sort of dismissive of my plan to come down and check out how he was doing with that diagnosis.

And so I arrived. And I was trying to get a little bit of information from the nursing staff and waiting for the physicians to round. And my dad got this note out to me. And I think he's going to disclose something private and important that maybe he hadn't wanted to share on the phone or hadn't wanted to share with my mom.

And I think it was telling me to go to a certain property and make sure that there was hay, corn out for the cattle. But I did touch base with my brother about some of the other things that needed to happen on the farm. I just remember thinking, well, he's still good enough to give me farming chores so he's probably going to be OK, which was very true. At least he hadn't lost sight of what was truly important.

[Dr. Schapira]

That's so funny. And in my reading of your essay, perhaps the central theme also is his deafness. And it seemed to me as a reader that he uses deafness almost as a shield so that he would protect himself from the things that he didn't want to face or talk about, and that he used this very well to stay in control. And that perhaps suited him and his identity as the farmer, the grounded guy who was supporting his family. Was that your intention in conveying the deafness in the way you did?

[Dr. Graff]

Yeah. And I think my mother would 100% agree with your assessment that you just articulated so beautifully. He really is not bothered in any way by not being able to hear and had used it to avoid talking about things that he's not interested in talking about and has used it to augment his own stubbornness in any given situation where his way or the highway kind of because he can't hear with anybody else's way might be.

And that's a really interesting dynamic in our family not just when it comes to health care but just in all the little day to day stuff that's happening in any extended family is communicating effectively with my dad.

Through the years, he ran a successful business. He did some general contracting on the side of being a farmer and did great doing those detailed business things even with a hearing loss. Does a good job reading lips if you are making good direct eye contact with him when you're talking more German so there's lots of hand waving going on and hand gestures to communicate anyway which help fill the gap.

And I think a lot of it is just very intuitive. He is, I think, very empathetic and can know what people are feeling around him even if he can't understand their words. Even though there's a clear barrier in our communication, I always still feel like we're able to get it done.

Sometimes it's hard to talk to him. Like he'll call me when I'm at work and I have to yell so loud into the phone that I'm like, oh my gosh, everybody in my clinic can hear me on the phone right now until I close the office doors. And even then I know that people can hear through the walls if I'm screaming at him through the phone. But it's sort of our normal at this point.

[Dr. Schapira]

So it sounds to me in reading your essay several times, it sounds that you are completely connected to your dad and that the deafness certainly has not come between you. But have there been times in your life when you felt sorry for his not being able to hear or felt you needed to defend him from others perhaps who didn't understand or relate to him because of deafness?

[Dr. Graff]

For me, and I hadn't anticipated before-- the only part of his hearing loss that's ever been heart wrenching for me that I know he doesn't hear my children. I have three kids.

And I know that when they say, "I love you, Grandpa," or "thank you for my present, Grandpa," or those little things that they tell him that he doesn't hear what they're saying because they have little kid voices, and they mumble, and he can't read their lips. And little kids speech patterns aren't always predictable or follow a normal conversation line. So he can't confabulate the gaps in what he understands and what they're really saying.

And my oldest child who's nine now, the last time him and my dad were together, he was trying to ask my dad about farming and what it's like to be a farmer and about the cattle because he knows that that's something that's a real interest to my dad. And my dad just kept responding with yeah kind of responses, like clearly wasn't understanding what my son was asking him at all.

And that was really difficult to see and watch because there was not a real good way for me to foster the connection without getting in the middle of it. So I did end up repeating his questions for my dad several times but I can tell that that sort of spark and intimacy that you'd like to see your children and their grandparents have is just going to be fractured a little bit because of my dad's hearing loss.

[Dr. Schapira]

In your essay talking about this point, you talked about the fact that there may be barriers that can be invisible from either side from patients to clinician or clinician to patient. How does your dad's experience and your experiences as a caregiver affected the work you do every day when you're with patients and thinking about perhaps invisible barriers that you're not aware of?

[Dr. Graff]

You know, I tried to be more intentional asking the family members that come with my patient toward the end of a visit. So during the visit, I'm trying to stay very focused on the patient, making sure that all of their questions are answered and making sure that they understand everything.

But then toward the end of a visit, particularly a new patient consult, or one of those disease progression heavier oncology clinic appointments, I try to look at that family member and say, is there anything that you wanted me to know or that you thought was important that we haven't covered yet, to see if something comes out if there is that barrier. And I think I mentioned in the essay something about food insecurity.

There's been several times where in that moment, the family member has shared that they are really worried that they're not able to get to the grocery store to get healthy food, or that they see that they're skimping on their blood pressure pills in order to pay for their cancer treatment medications, or things like that that I'm lucky to work in a place with really great resources that I can help and support a lot of that but the patient never would have volunteered that if I hadn't specifically called out their family member to offer that additional information. And so that's been a real opportunity for me to grow professionally to see that specifically giving the caregiver an opportunity to share their concern strengthens my ability to care for the patient.

[Dr. Schapira]

So my final question to you is this. You talked about your dad having had bad experiences early in life with doctors and referring to them as those damn doctors. What do you think your dad thinks about your career?

[Dr. Graff]

You know, I think that my dad is really, really proud of me. But I don't know that that has anything to do with my career. I mean I think he would have been proud of me if I was a farmer, or a teacher, or anything. I mean I think he's a parent and he loves me and is proud of me. I think that he has seen some of my professional achievements and better understand why I love what I do.

I suspect it's actually helped make him a little bit better as a patient. I mean I think he understands a little bit more what a physician looks like outside of the clinic and all the things that go into getting a physician in a clinical practice, all the years of work, obviously that lead up to that moment. And so I think he's proud of me. I don't think he considers me a damn doctor, which is probably a feather in my cap. And I think he's proud.

[Dr. Schapira]

Well, thank you so much for sending your essay to us. "The Cattle Don't Care" is beautifully written. It's rhythmic, and breezy, and funny, and addresses one of the most important themes in our lives. And that is our parents, ourselves, our love for our parent, and the enormous distress or impact of having a parent who is ill. And you did it in such a beautiful way. Thank you, Stephanie.

[Dr. Graff]

You're welcome. And thank you so much for inviting me to this podcast. It's been fun.

[Dr. Schapira]

This concludes our interview today with Dr. Stephanie Graff. I'm Lydia Shapira, the host for Cancer Story and the "Art of Oncology" podcast.

Until next time, thank you for listening to this JCO's "Cancer Stories, the Art of Oncology" podcast. If you enjoyed what you heard today, don't forget to give us a rating or review on Apple Podcasts or wherever you listen. While you're there, be sure to subscribe so you never miss an episode. JCO's "Cancer Stories, the Art of Oncology" podcast, is just one of ASCO's many podcasts. You can find all of the shows at podcast.asco.org.