I found out about Stan by reading his book and it really spoke to me because it covers all the difficult topics that come with talking to someone with cancer. Stan is a really deep thinker who uses his own cancer experience to distill his wisdom into practical ways of dealing with cancer. Here are some things that we cover today:
- Dealing with the shock of being diagnosed with cancer
- How to get the support you want
- Different perspectives and dealing with reality of cancer
- and much, much more!
Joe: Stan, thank you so much for taking the time to talk to me today. I love your book: Loving, Supporting and Caring for the Cancer Patient. Tell me, how did that come about?
Stan: How did the book or how did my interest in cancer?
Stan: Okay. Well, I developed prostate cancer at 57. It wasn’t unexpected because my PSAs had been high, and the rectal exam always showed something that was not right within the gland. I always had suspected it. When it finally was diagnosed, it still came as a shock, as it does for almost anybody who gets a diagnosis of cancer. What I started experiencing were the kinds of reactions that I thought were odd from some people and were very genuine from others.
One of the things that kept coming up was when people heard I had cancer and that neither I nor the oncologist knew the outcome of it, was the standard phrase, which was, “I’m so sorry to hear that.” Then sometimes that was the end of the conversation. Other times, another statement followed, “What can I do to help?” Well, as I started talking to other people with cancer and counselling them, I found that what people said to me wasn’t unique.
That it was something that almost every person that I’d spoken to who’d cancer said, “Yes, you know, good friends will say, ‘I’m so sorry’, then there’s nothing afterwards.” What I wanted to do was, come up with a book for people who knew someone who had cancer. Essentially said, there are a lot of things you can do. There are a lot of things you can start by understanding what someone who has cancer goes through. Then there are different things that you can learn to do.
Instead of somebody saying, “Jeez, I’m so sorry to hear about what you’re going through”, to have them say, “I’m so sorry to hear what you’re going through and I know that it’s important for you to get out every day. Why don’t I come here tomorrow at ten, we’ll go for a walk?” It was in many ways as simple as that. That brought about the book.
Joe: Yes, fantastic. It sounds to me like, I think this comes from my own experience, that most people in your life, your friends, your family, they want to help, they genuinely want to be there for you, but they just don’t know how. We have to guide them. Would you agree with that?
Stan: Yes. I think it’s a two-point process. One is, yes, you need to guide them. The other thing is, what I found is, there are a lot of people that are so afraid of death and so afraid of cancer, that even though they want to help, it’s scary for them to do that. It’s almost as if I’m going to acknowledge that your life is finite and that I may lose you, what it says, I reflect back on myself.
If I’m okay with accepting death as a part of living, then I can go ahead, I can help you, I can do things that other people may see as impossible to do, in terms of healthcare and other things. If I am so afraid of dying, that to put myself in contact with you increases my fears, then that person needs to work on themselves before offering you help. Does that make sense?
Joe: Yes, absolutely. Those people who are uncomfortable, like you said, with death and dying, how do they come to terms with that reality?
Stan: If I knew that answer, this would be a wonderful world to live in. If you look back historically, in the middle ages, when death was rampant from the black plague and other things, people accepted death as if that’s just a part of living. That’s what we do, we die young. It wasn’t something we’re afraid of because you saw it every day. I think as we became more civilised, more industrialised, we tried to make death something that was easier to accept. We didn’t talk about grandma dying, we talked about grandma going to sleep forever.
We didn’t talk about uncle Joe’s death, we talked about uncle Joe going on a long journey. Instead of viewing the corpses in their natural state, we sent them to special places where they were painted and made to look like they were alive. We’ve done so many different things to hide death, that it’s not surprising that we were afraid of it. We put it off to the side. I think that a way of getting people to be more accepting of death is to have them start talking about it a lot earlier. It was interesting, I got an email message from a ninth grader in New York City, who wanted to interview me about living with cancer.
I thought, a ninth grader? How wonderful is that? Of course, I did the interview. We spent some time talking. I said, how is it possible that you want to explore a topic that 95 percent of adults are afraid of discussing. He told me that his grandmother has cancer and he knows she’s going to die. He wants to understand it a lot better. I think there’s hope. I think the younger we start talking about death to people, the easier it will be for them to accept it. When I was diagnosed, both of my children were adults, we started immediately talking about my death.
Now, this was 16 years ago. What I tried to instil with them then is to realise there will come a time when I’m not going to be able to fight my cancer anymore, unless a bus hits me first. When that happens, they need to accept it. Until that time, we need to live our lives as if today was my last day. For them and my wife, that’s working.
Joe: That’s a powerful transition, Stan, because I think it’s possibly also a reason why being diagnosed with cancer is such a shock, because it just hits you. It stays with you, doesn’t it?
Stan: It does, but it transforms in different ways. I think when I was first diagnosed and I heard the diagnosis, that you have cancer, and we’re really not sure what the prognosis is. It was almost I went into shock. A lot of people really don’t think about emotional shock to be the same as physical shock, but it is. Both forms of shock just debilitates you. When I heard that, because my assumption was, cancer, death, cancer, horrible experiences, death. The analogy just keeps going on and on.
What I learned, not from my cancer, but I learned from the people that I served in hospice is, there are different ways of approaching ideas about the end of your life. The most important thing that I learned from my patients was that the way that you live will determine how you die. If I live fearing every day, fearing every piece of food I’m going to put into my mouth, I’m going to die with a lot of those fears. If I turn that on its head and say, “You know, who knows how soon I’m going to die.
I may not be able to do anything about that, although, I’m trying, but what I can do is, make every day that I am alive work and be meaningful.” To me, that was the big lesson. If I have to thank cancer for anything, and I’m reluctant to do that, that would be it because it essentially gave me a new understanding of how I wanted to live my life for as long as I have. I would prefer to learn that from a crazy uncle in a bar over a beer.
Joe: Yes, I love that, Stan. I couldn’t agree with you more, that if we live each day as if it was the last, that really makes a huge difference into how you see yourself, how do you experience your life. You’re living in the moment and all of those fears and thoughts about cancer and all of those horrible things that might happen, they kind of just go away, don’t they?
Stan: Yes. It’s interesting. I recently wrote an article and it was about complacency and living with cancer. The reason that I wrote it is, now, for 16 years, my oncologist and I have kept very good tracking of my cancer. For some of your audience that doesn’t know about how cancer works, there’s a measure called a PSA. A PSA is a measure of a protein that prostate cancer cells produces. After you’ve been treated or waited to be treated, the oncologist will look at measures of PSA. The higher the PSA, the more active your cancer cells are. The lower the PSA, the less active.
Now, he measures that along with measures of testosterone, the male hormone. Testosterone is the main ingredient that can fee cancer cells. The idea is, you keep your testosterone low and if everything is working as it should, the cancer cells PSA will also remain low. You can live with that indefinitely. That’s what’s been happening for 16 years. It’s been this perfect correlation. Keep the testosterone low, PSA stays low. Recently, that’s been changing somewhat. It’s taking longer for the PSA to become undetectable.
Now, when it becomes undetectable, that’s when we stop the injections and we wait until rises and then we start injections again. We knock it down. It’s like a heavyweight fight where you have a punch-drunk fighter in there, whenever it’s appropriate, you hit him, and he goes down. Well, my punch-drunk cancer cells are getting up a little quicker now. It’s become apparent that it’s taking longer to knock them down. Not only that, but we think that there are some that are now learning to get their nourishment from things other than testosterone.
That’s the beginning of the next phase of my cancer. I wrote this article. Essentially, it was not so much to share with people the stage that I’m at, but rather to have them understand that after a number of years of everything being fine, you become somewhat complacent. I did. I was complacent about how I was leading my life. That changed when we looked at the data and I realised that I probably still have a lot of time left, but I don’t know how much, and I’ve been wasting a lot of it by being complacent about my life.
I wrote the article, lots of response, a lot of people read it. It was interesting to see the reactions of people. There were some people who clearly had read my book on being compassionate to cancer patients and had internalised it. These were not only friends, but these were some acquaintances, these were some people I didn’t even know. The way they responded was, okay, so let me do this, or let me do that. Or what can I do? It was really clear that they internalised the message of the book.
There were other people, and a lot of them were relatives, who still were so afraid of losing me, they couldn’t make that lead. It was, “I’m so sorry to hear about that.” That’s where it stopped. I just found it interesting the way people react, how differently they react depending upon what their view of death is.
Joe: Yes, I guess it’s almost selfish, right, because when you are saying, “I’m so sorry” and it becomes all about you, not about the person who has cancer.
Stan: Yes, I don’t interpret it as selfish so much, more so as fear. There’s so much fear there about their own lives that is hard to be truly compassionate to someone else. I don’t think it’s selfish. That’s the circumstances. That’s the life they’ve lived. We always bring back into our present everything we were in the past. Not only the experiences, but the fears, the loves. Whenever someone says something to me that is not quite right, instead of judging them, what I usually try to do is say, “What’s the context? What’s the context in which they made that statement?” When I do that, I’m usually much more understanding of their reactions, even though I’d like the reaction that I would get.
Joe: Yes, absolutely. You know, Stan, I had a really good laugh when I read your initial email you sent, I think you sent sometime to your family and friends about being diagnosed with cancer. What really made me laugh was, their reaction was almost identical to people in my life. Tell me, how did that all come about? How did your people react?
Stan: Well, I look at that email with the culmination of my past life. Now, when I say past life, I’m not talking about different universes, but my life before cancer. I was a university professor. Very rigid. I analysed everything, whether it was some complex clinical program, or whether an apple was sufficiently sweet for a treat. I was very structured and very unemotional. When I received that diagnosis, the response that I should have had was, this is something that’s life-threatening. You should reach out to people who love you, who I know want to help you.
That would have been the response I would have liked to have done, but I didn’t do that. I just talked about context, so I responded in the context of what my life had been. It was structured, it was playing down the seriousness of it. It was joking, because if you joke about something, then you don’t have to take it seriously. It was all of those things that minimized the emotional effects of thinking that you may die. Some people were very glad they received that kind of email because it made light of something that was potentially deadly.
Other people asked, what are you afraid of? One person was annoyed that I blasted it out to 300 people rather than talking to them individually. That was the background of it. That’s why when I wrote this new article, there was no humour in there, there was no deflating the seriousness of what was happening. I learned.
Joe: Yes. People’s reactions, did that surprise you at the time?
Stan: You know, it didn’t because I wasn’t concerned about other people’s reactions. I was still – I don’t know how many weeks I stayed in emotionally shock. During that time, I just wasn’t concerned. I wasn’t concerned how my wife and my adult kids felt. I wasn’t concerned how family. It was, hey, I may be dying, this is about me.
Joe: Yes, absolutely. Also, I love how you used it in your book, Rashomon, that Japanese classic to describe how truth and reality are really just based on someone’s perspective. Why is that important during cancer?
Stan: Well, I think the biggest lessons, at least people tell me, that I’ve taught them, people who I’ve counselled whose loved ones had cancer, is that they don’t understand that living with cancer is like living with a filter. Then everything that you see is filtered through this lens. Someone says, “How are you?” Just as a matter of courtesy, and you’re thinking, is something wrong with my skin? Am I appearing pale? Someone makes a comment that, “Jeez, why don’t you come over for dinner next week?” You may say, what, doesn’t he think I can handle my own food? That I can make my own food?
It’s like that not only with cancer, but I found that occurs with a lot of chronic or acute illnesses. We see the present through our needs and our history. In Rashomon, which is one of my favourite Japanese movies, you had four people observing a murder. One actually was the ghost of the guy that was murdered, what they did was, when you heard them tell the judge what happened, it was really clear that each saw the murder through their past history and their current needs. That I think is one of the most important messages that I could send to people whose loved one is living with cancer.
You can’t assume you understand what they’re going through. Unless you’re going through it. It’s a plea for acceptance. When you don’t understand something that a cancer patient is saying, or it comes out as a terrible criticism or something very negative, step back a moment and think about what their body and their mind is going through. Living with an illness that they don’t know when it’s going to take their lives.
Joe: Yes, exactly, that’s powerful. It’s also about, I think what you talked about earlier, as well, you touched on, it’s about offering specific proactive help. Could you talk about some of the things that someone can do to be direct and specific with the sort of things that they can come in and help someone who’s going through cancer?
Stan: I’ll use the example in the article that I wrote. I’m a firm believer in traditional medicine. I will stick with my hormone injections as long as they work, but I also realise that I can do things for myself that fall off of that continuum. Things such as different supplements, meditations, relaxation, different times and different ways of eating, losing weight. The list goes on and on. Now, those are things that I ask people for help I had no problem with that. When we go out for dinner, people will help me select restaurants where they have food that they know I can eat.
When we go over to parties, people know to always offer me red wine, because there’s more anti-oxidants in red wine than white wine. There are a whole bunch of things like that. My son knows that my level of strength has diminished over the years. He doesn’t even have to be asked to life things, he just will do it automatically. I think that if you have a loved one or an acquaintance who is going through either treatment or living with cancer, the first place to start is to ask them, tell me what I can do to help.
Very specifically. I know you’re having chemotherapy next week, and I know that you’re going to be week. Let me go out and I’m going to shop for you. Or, things like that. You’re having trouble organising. I know it has to do with the medication. Let me help pay bills with you, we’ll do it every Friday. There are a lot of things. There’s a whole list, but it varies from person to person. I think that’s the place to begin, the two places to begin. Understand that they’re living in a very different world than you are. Two, offer to help doing very specific things that will ease their journey.
Joe: Yes, that’s great, because it’s like you were saying in the book, that having cancer is a bit like being in a horror movie, when you know that these terrible things are going to happen, but you don’t really know when, so you’re constantly in the state of not knowing what’s going to happen. Tell me, Stan, what’s your advice with dealing with uncertainty? What is your advice on living with not being able to predict how things are going to turn out the next day?
Stan: Complicated question and I will probably give you and inadequate answer, but I start on the premise that life is uncertain. That there are no permanent things. Whether it’s items, emotions, parts of my body, or anything else. We live in a state of impermanence, a very Buddhist concept. If you really accept that and you realise that whatever you have is going to eventually leave you or dissolve, then you start with the mindset that is different for most people, that want to hold onto everything. We start with that.
We then say, okay, if the world is uncertain, what can I do to increase my sense of stability or certainty? I can be very Buddhist in my thinking that everything is impermanent, but that doesn’t help me when I sit at my desk and I’m annoyed that I can’t do something. What I suggest that people do is, they start thinking about islands of stability, I call them, or islands of certainty. What things are there in your life that gives you a sense of stability, serenity? For me, it’s a couple of very simple things. I get up in the morning at 5:30, I make coffee, I answer emails, I take my dog for a run, I come back, play my flute and exercise.
There are five things that make me feel stable and certain. It’s different for everybody else. Now, what I think people can do is, explore what makes you comfortable, explore what makes you relaxed. Look at those items as things that you do every day. Some may look at it and call it ritual. It doesn’t make a difference what it’s called, and how it’s configured, these are your islands that you can hold onto, when everything else is in turmoil.
Joe: Yes, absolutely. You have an interesting take on simplicity. Could you talk about that, as well?
Stan: Yes. As we get older, we accumulate, we not only accumulate things, but we accumulate activities and we accumulate emotions. We never seem to want to give anything up. My brother is about to move to the Bay area and he and his wife had lived in their house for about 30 years. They can’t get rid of anything. They have to. It’s this dilemma for them. I think that when you look at how we accumulate, I think the question is why?
Why do some people become hoarders? Why is it that I refuse to let go of a woodworking tool that I haven’t used in 20 years? I think that the answer, at least that I’ve come up with and it may not be correct, is that we falsely believe that holding onto something from the past is going to create stability in the present. Why else would someone save 25 years of newspapers they haven’t read and stacked them in their apartment? I think that’s the motivation for why we don’t want to give things up.
What I believe is, when you can start doing that, when you can simplify your life, you can reduce it down to the basics. To those things that are most essential for your happiness. For me, I have a couple of rules that I use. That when I look at something that I’ve written or something in my office, if I haven’t touched it in two years, it probably should be thrown away. I use that. The other thing is, I look at what would make me happy? Whatever will make me happy, I’ll keep. If it doesn’t, what’s the point?
Joe: Absolutely. That’s a great rule of thumb, I love that. Tell me, if someone wanted to find your books, find out more about you, what do they do?
Stan: Well, I have a website, the website is: stangoldbergwriter.com. On that website, there are about 220 articles that I wrote.
Joe: Is that all?
Stan: For this week. All of the article either deal directly with cancer or chronic illness or aging or end of life issues. Essentially, they all roll up into aging. They’re welcome to read them, there’s no charge for them, they can download them, they can share them. No problem with that. All of my books are on Amazon, so they can either find them to see some of the reviews on my website or do directly to Amazon. I’m also, I was just asked by Arianna Huffington to write for her new website, which is called Thrive Global.
I will be writing articles for them that will also appear on my website. I’m not working on a new book on aging. It’s looking at what are the major problems that those of us who are old experience with aging? What I’ve looked at is, most of the problems have to do with transitioning. Transitioning from being middle-aged to old is simple, but also transitioning from health to illness to support to loneliness, a whole variety of these transitions.
What I’ve done is, I’ve looked at the work that I’ve done on strategies, ways of which you can solve problems. To say, okay, how can I use these strategies to solve the most difficult problems of aging? That’s the book that I’m working on right now. What I’ll be doing is, on Arianna’s website, most of the new articles that will be published will have to do with aging. Obviously, tangentially with acute illnesses, like cancer.
Joe: Fantastic, Stan, I’m really looking forward to reading that book. Well, thank you so much for sharing your wisdom and practical advice. It’s been fantastic, thank you for your time.
Stan: It was my pleasure. Thank you.