Book recommendation: Surviving the Storm

An interview with author Cheryl Krauter, LMFT (pictured)
Cheryl Krauter is an existential humanistic psychotherapist and a cancer survivor.

Interview by: Meridithe Mendelsohn, Ph.D., manager, Cancer Survivorship Program

Meridithe Mendelsohn: You have written a book for cancer survivors. What is it about?

Cheryl Krauter: My book is called, Surviving the Storm: A Workbook for Telling Your Cancer Story. This came out of my own experience with cancer. The kind of attention that was paid to moving forward from the emotional trauma, particularly the diagnosis and the treatment, was not addressed to my satisfaction.

MM: Just to clarify, when you are talking about survivorship, are you talking about after cancer treatment is finished?

CK: Yes, that is how I define it and how I define it in this book, when you are done with treatment. When I was first diagnosed and told that now I was a survivor, I was like, “What??” I don’t feel like you have the bandwidth at that point. You are thinking about surviving, you are not thinking about survivorship. So, you jump into action. You go to the appointments, you’ve got the program, you’ve got the plan, you’ve got the structure, and then, bam. It’s done. While there are some support groups, I found that the support groups are often not professionally facilitated which can be an issue. There were some groups that were held from 2- 3 p.m. on a Wednesday. I am working then. I just couldn’t find a place to plug in.

MM: Was anyone giving you resources or saying, “Now here is the scoop, now that you are done”?

CK: I was given a brochure for a center nearby but I didn’t really get a lot of resources. Our local community resource center does not have a survivor group.

MM: Why do you think this is? Why do you think this phase of care is not seen as important as treatment?

CK: I think the sheer numbers feel daunting to people. Thank goodness for the sheer numbers! It is becoming a gigantic group and that is really fairly recent. They have no idea how to deal with this immense group that is in need. One of the bigger factors is that the emotions that happen during survivorship are complex, they don’t fit within a typical eight-week program. “Here is the week on nutrition, here’s the week on exercise.” These types of programs are incredibly valuable, but they don’t speak to the ongoing concerns, living with uncertainty being number one. Most clinicians who are not educated or have experience really being able to sit with uncertainty, don’t know what to do.
It is easier to say, “Aren’t you glad that you are done? Wasn’t this a gift for you?” There is a lot of pressure for the survivors to get on with it, to get over it. 

MM: I have heard about patients being reluctant to report symptoms and problems to their cancer treatment to their team. They feel that they should be thankful because their team cured them of cancer so they really shouldn’t be asking for anything else.

CK: “I don’t want to be whining, I don’t want to be a burden.” I have had to help numerous survivors in that position and two of my clients that are living with cancer to be able to say that they have a right to their thoughts and feelings. When I get someone referred to me, either they have just finished treatment or they may be on the last treatment. We start working then. If I get a good year with somebody right when they are finishing, we process what has happened, and this is what the title of the book means. People need to tell their stories. And they need to tell them and they need to tell them and they need to tell them until they are ready to move on to the next chapter.

If that has happened, what I have seen is an authentic, genuine movement on to the next chapter. Not, “I have to do this,” and carrying all the baggage in with you. When someone falls of the cliff and doesn’t know where to go and who to talk to is a key point in survivorship. I am not saying that people can’t come back years later and still deal with it but it really makes a difference to understand it as it is happening. One woman had a very bad health history and then was diagnosed with cancer. She was pretty convinced that this was it. “I can’t see how I am going to live.” We really worked with that, the uncertainty of that. It was very helpful for her that I didn’t say, “Oh, you’re going to be fine.” I didn’t try to make it go away. We sat in the depths of her feeling like, this is it “I might as well just die because there is no point.” I let her have that, I sat with her and she kept processing it until she realized, “Maybe I will try this.” When she walked out, she realized that, “I am alive. I am going to continue to be alive. And I’ve got some things I want to do.” And, off she went.

MM: Thinking back to your book and the workbook that is contained within it, do you feel that people would need a therapist to help them work through that workbook or is it something people can do on their own?

CK: I designed it so that it is very user friendly. It is written in a narrative form. It is designed so that if you do your workbook, and you feel comfortable, you can take it to your clinicians and use it to provide them with helpful information. There are treatment summary and care plans for survivors available from most cancer centers and the idea of this book started out as an alternative to the existing plans. This is the patient’s care plan. This is you saying to your clinician, “Here’s how I am feeling. Here’s what matters to me. If you want to know me and help me, here. Put it with my chart.” That’s an option. It is designed so that if you have a friend to talk to or a need to see a therapist, you can get a lot of work done but it is not necessary. The other really important thing about the book is that it includes the partners, the friends and the family members because I consider them survivors. They are a group that is neglected. They have all kinds of feelings and thoughts and trauma of their own. They have no place to talk about this. Rarely do clinicians ask them, “How are you? What is happening for you?” It is a whole community that is hurting and sometimes feeling lost. In the book there is a worksheet for each of these other survivor groups. There is one for the partners and one for the family members. There is a worksheet for young children, which obviously they can’t do themselves. It has things like, “Draw this. Does your tummy hurt? Tell me about what kind of superhero you would be.” It is designed for the child. There is also a section for young survivors. Young survivors and those of us that are older have very different situations. It has started to change now, but they are often lumped in with older people and they don’t relate. The issues are totally different. And there is also a section in the book where I take on what I call the dark side. The title is, Pink Has a Shadow. The whole dark side of cancer and bringing humor to it. Here are the worst cancer lines you have ever heard, like “the gift of cancer.” This is the section that says here is your space to rant and rave. The workbook is designed so that it is something you can come back to because your thoughts and feelings will change, your experience will change. I have a place to think about key moments like anniversaries, scans, friends dying, people have recurrences. These are all points where you might struggle again. The most important message I want to give is that you have a story to tell, an important story and the message of this book is giving permission to really open up in a deeper way.

MM: Do you think that if a couple of people were using the workbook and got together, it would be helpful to them to share with each other?

CK: Yes, I think it is definitely designed to share.

MM: I think that if there was a way for people to connect through using your book, it would be very helpful.

CK: That is my hope that clinics, hospitals, programs and oncologists could give this book out. When patients tell oncologists about how they feel, they can say, “I have a resource for you.”

MM: I plan on adding this to our resources for the nurse practitioners in our Survivorship Program at Swedish. I think you have another book coming along. Tell us about that one.

CK: When I wrote the first book and was offering it to different publishers, it had a chapter for clinicians. It always stuck out like a sore thumb. My publisher said, “This is a different book. Are you willing to write a companion volume for the clinicians?” And I said yes. That is what I am working on now. It is from the same perspective, the existential, humanistic perspective. It is really about relationship, collaboration and self-care. The working title is Wholehearted. It is also done in a workbook style. This framework talks about meeting the situations and struggles of life as they are, facing into both the difficulties and the joys. I suggest to clinicians that after you listen and have a relationship with your patient, you will be able know that person well enough to say, “Let me give you this resource. You might want to talk with this person. Or how about this?”

This article is from the Spring/Summer 2017 issue of Life to the Fullest, the newsletter from the Swedish Cancer Institute (SCI) dedicated to those with cancer, cancer survivors, and their family members and caregivers.