2017 Cancer Roundtable

Presented by Lourdes Cancer Program • Photos by David Michael Howarth

After the success of our Men’s and Women’s Roundtables, we decided to gather a unique group of people who all share a connection: cancer. We had no idea how the night would unfold, but it turned out to far surpass our expectations. The evening’s conversation was heartfelt, free-flowing and sometimes incredibly profound.

 

Why They Do the Work They Do

My mother died of breast cancer when I was a medical student. She was 56. In the span of 10 years, we lost all her sisters: three to breast cancer, one to ovarian and one to colon. My story is a horrible one, and yet it’s taught me to be a better doctor, to be more empathetic, because that diagnosis touches every person who loves that patient. Every single one. I know what that is all about. – Kathleen Greatrex

I had to retire from teaching because my myeloma was being very aggressive and my immune system was compromised. I used my teaching skills to educate the myeloma community. I use social media, so my reach is not only locally, but throughout the world. I have 5,200 Twitter followers. – Cindy Chmielewski (@MyelomaTeacher)

What led me to oncology was the intimacy – the trust you need from your patient and the responsibility of the care of that patient. – Eduardo Fernandez

I started blogging because when I was diagnosed, my children were 10 and 13, and all of our neighbors and friends were asking them questions. It wasn’t fair to them, so I thought if I could put it out there, they wouldn’t be approached as much. – Kristin Hurley

I’m a daughter of a cancer survivor. Being African-American, no one talked about cancer when I was growing up in the ’90s; my mom said we couldn’t tell anyone. So I was like, “Well, I’m going to do something about this one day when I have a chance,” and that lead me to cancer research. – Georita Frierson

 

Cancer Myths

A lot of people associate cancer as having power over them. It’s like you’re applying a human trait to something that is a biological entity. Sometimes you have to empower the patient to say this is not more powerful than I am. – Eduardo Fernandez

People think we haven’t made advancements and cancer is the same hell it’s always been. That couldn’t be farther from the truth. We’ve learned so much in such a few years, it’s incredible. People just don’t know that. – Howard Saul

 

Facing Death

Very often patients don’t want to end their treatment; they want to keep going. We have to show them there is comfort at the end. We can be positive even when things are negative. It’s very important we do that – not the fact work, not the data work, but the emotional work. – Stephen Goldfine

My father gave me great insight into the strength that someone needs in order to say, “The world will go on, and I’m not going to be part of that.” To me, that is just mind-boggling. Until someone is there, you have no concept of what that means. As physicians, we try and understand, but we don’t. – Eduardo Fernandez

I used to always struggle with the tragic loss of someone very young, but I can’t tell you how touching it is to have two 85-year-old people in a room who have been married for 65 years, and their partner is dying. That’s equally as painful. – Maurice Cairoli

 

Recommending Hospice

I get asked all the time, “How do I know I’m doing the right thing?” I truly believe as a physician we were put on this earth to do good, so when you give recommendations to your patients, you’re acting from that goodness in your heart. – Stephen Goldfine

When you put someone on hospice, that visit is really difficult. The nursing staff knows you’re having this discussion, so when you walk out of the room, they’re crying and you’re crying. Then you get the news the patient died, and you cry again. But having said that, in what other field of medicine do you get to have the bonds we have with these patients, someone sharing the end of their life with you? It’s a privilege that very few other disciplines really get to feel. – Generosa Grana

It’s very special to be with someone at their last breath. I know people don’t see it that way, and it’s very hard and difficult work, but you remember those people for years. – Michele Gaguski

 

Challenges of Treating Cancer

What’s frustrating for me is trying to get treatments approved. Everything now is a struggle, whether it’s a test or a treatment or surgery, the obstacles are becoming greater and greater. It’s very frustrating. – Howard Saul

 

It’s difficult when patients hear all the marketing on television, and they come to you and say, “Why aren’t you using this? Why aren’t you using that drug?” The reality is the research isn’t there. – Generosa Grana

It’s very frustrating that no two peoples’ cancers are alike, even if you have the same kind of cancer. What may work for you may not work for someone else. – Cindy Chmielewski

 

When Patients Ask “How Long Do I Have?”

I’m not so sure honesty and truth are the same thing. When you address goals for the patient, you’re always honest. We know what the goals are. I also know that at some point my patient may succumb from this disease. The truth is I don’t know when, and I don’t know how. The biggest mistake would be to assume that I do know. So for me, they’re different concepts, and I struggle with it all the time. – Maurice Cairoli

I have stage IV patients that get cured, I have stage I patients that don’t. I can’t predict that ahead of time. I treat the individual patient as they come to me, and we’ll see as it unfolds what it’s going to be for them. – Howard Saul

Patients will ask, “What is the chance I will survive this cancer?” And you tell them a number, but they don’t understand that. Where does hope meet reality? You never want to take hope away from the patient. So you struggle. You try to get to a point where hope and reality intersect. – Catherine Kim

People say that medicine is an art, and I think it is an art. It is not a perfect science; you have to meld the research, the biology and that interpersonal relationship. That’s difficult. – Generosa Grana

 

The Perception of Cancer Patients

People would see me bald, and they’d give me the sad, “Oh.” It was really, really hard to be out in public. It was shocking to see the stares and the looks. – Kristin Hurley

 

Advanced Care Directives

There were points in my disease when I wasn’t responding to treatment. I had no advanced directives in place. Having to do that, thinking I was dying, was very, very hard. I wish somebody would have asked me to do it when I was doing well. – Cindy Chmielewski

What the literature is showing about advanced care planning is patients want to know, but they’re afraid to ask providers. They would like to talk about it, but they’re afraid. – Bonnie Jerome-D’EmiliA

Advanced directives are something everybody should have; but not only the cancer patient, the spouse that’s with them too. It’s just part of life planning. – Howard Saul

 

Memorable Patients

I have one patient, who every time she introduces me, she says, “This is the woman who saved my life.” And I say, “I didn’t save your life, God just used me. That’s why I was there.” So, you know, I’m grateful I was there, and I’m grateful she’s alive. – Catherine Kim

We’ve had young people come in for help with their hair and wigs. One girl had always wanted to go to fashion week, so we pulled every string we could to get her there. But that morning, she was too weak to go. So we created fashion week for her. We did her nails, we did her hair, we gave her whatever she wanted. She passed away less than a month later. It’s very emotional to talk about it. – Paula Brown

Early in my nursing career, I had a patient who was 18, and I was 22. I kept thinking, “How can I take care of this patient who’s only four years younger than me?” But he taught me so much; I believe caring for him helped me take care of other patients. – Michele Gaguski

There is a current member of Gilda’s Club who has multiple myeloma. She has a child who’s been coming to our Noogieland program, and she speaks frankly to her daughter, saying, “This will be your family when I’m not here.” She’s going through some intense times right now, with those lingering thoughts of “What’s going to happen to my family?” She’s an inspiration for so many people. – Sarah Griffith

 

The Family’s Role In Cancer

Some patients don’t have families. They’re in their 80s. They’ve lost their friends and their siblings, so you have to be very creative. That’s where the whole team comes into place. We become their family. – Christina Hunter

There’s one thing about cancer: It either brings a family together, or it explodes it apart. – Howard Saul

I get concerned when families aren’t part of the process. Your family is either your success or your failure. It’s a critical component of a patient’s success. – Eduardo Fernandez

 

Faith

It’s OK when patients are questioning their faith. It’s OK to ask the question, “Why?” Doctors are not really comfortable with that question. Why did this happen to me? Why did my treatment not go well? Because there’s a little bit of blame, if you will. But “why” questions are important. – Howard Saul

Sometimes I’m surprised by people who have what appears to be tremendous faith and yet, as things don’t go well and they’re near end of life, they don’t accept that they’re going to be with the one they’ve been seeking to see. It’s our job as physicians to accept that there is something greater and not ignore it as a component of a patient’s well-being. It’s a way to help people accept that we’ve done what we can, now it’s in someone else’s hands, and we have to accept that as part of who we are. – Eduardo Fernandez

I’ve had so many patients who were scared to go back to church because they thought cancer is their punishment. Then they go back to church and they find, no, it isn’t. – Howard Saul

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