Keynote: Many Medicines Besides Drugs

Welcome and Keynote: Many Medicines Besides Drugs 

Presenter: Peter Gordon, Transplant Survivor and Author of Six Years and Counting: Love, Leukemia, and the Long Road Onward

The Keynote presentation is 30 minutes            Download Speaker Slides  

Summary: Insights and lessons learned from an inspiring survivor’s transplant journey.

Highlights:

• "Medicines" are small things you can do to harness control through your cancer journey.
• Use science, above all else, to inform your medical decisions.
• Balance your stresses with appreciation for the things that have enriched your life.

Key Points:

04:27     Make a personal connection with your team for better communication about your care

07:18     Keep a notebook to jot down symptoms and questions between appointments.

11:57     When you are overwhelmed use your critical thinking skills to make sound judgments.

17:11     Mark your progress by tracking your test results and rebirthday milestones.

20:48     Keep yourself motivated with songs, quotes or pictures which embody your values.

21:29     Find healthy ways to express your frustrations and disappointments.

23:40     Humor is valuable and necessary to cope and to build relationships.

24:11     Writing in all forms is a helpful therapeutic tool for any survivor.

25:12     Find a purpose beyond just living.

28:31     Focus on appreciating the small things each day as well as life’s major achievements.

Transcript of Presentation 

00:00 [Sue Stewart] Speaker Introduction

I hope you enjoy today's symposium. And now let me introduce to you our guest speaker, Peter Gordon. Peter will be speaking on. Many Medicines Besides Drugs.

Mr. Gordon is a corporate training consultant who facilitates workshops on writing and leadership skills and large organizations worldwide. In 2008, Mr. Gordon was diagnosed with acute myeloid leukemia. After an anxious three-month wait to find a donor, he had an allogeneic stem cell transplant on Halloween night of that year. Mr. Gordon is the author of the critically acclaimed memoir of his transplant experience called "Six Years and Counting: Love, Leukemia, and the Long Road Onward." Please join me in welcoming Peter Gordon.

00:55 [Peter Gordon]

Hey, thank you very much, Sue. I appreciate the intro, especially mentioning my transplant on Halloween night. That's always sort of a source of humor as I tell my story. So, anyway, thank you so much. And hi there, everybody. It's my honor to kick off this symposium with you. You're going to hear from some of the top doctors and specialists in the world. And I really encourage you to take advantage of their expertise during their various presentations.

Now, as for my talk today, I need to tell you something right up-front. I'm not a doctor. I never went to medical school even though my mother really wanted me to when I was a kid, but it just never worked out that way.

But do you know something? I have gone to a different kind of school, one that many of you have probably attended as well, and that's the school of experience. And in many cases, the school of hard knocks. And I guess you could say I'm still enrolled in that school because this is a lifelong learning project for me.

So what I'd like to do today is to share a few of the lessons I've learned during my own 12-year cancer adventure. These are just simple things that I found helped to manage and make the best of my survivorship. Now, I call these "medicines," medicines with little quotes around it. And I'll come back and explain a little more what I mean about medicines in a moment.

02:26 When Peter learned about his diagnosis:  But first, I would like to tell you a story that'll show you what I mean by the medicines. So, to do so, I want you to come back with me in time about 12 years to the moment right before I first heard those three life-changing words. Three words that many of you have heard, "You have cancer."

So, there I was. I was in the doctor's office. I'd had a series of blood tests and then a bone marrow biopsy. And I was about to meet the doctor to hear the results of my bone marrow biopsy. Now, I knew a lot was at stake and potentially this could be a pretty big deal, but I really had no idea what I was about to hear. So, the doc waves me into his office and then I remember he closed the door behind us and I went, "Oh, that's quite an omen." And we're just getting settled in his office. And you know, before you get down to business at any meeting, there's a little bit of a chit chat? Well, during that period, as we're settling in, I noticed a photograph on his book shelf and it was of him and I presume his wife hiking. And it looked sort of like that.

And at that moment, I distinctly remember a little voice popped into my head saying, "Peter, I think this would be a good time to ask him something about him." So, I did. I asked him about that picture, and we ended up having a delightful minute or two conversation about hiking and a shared love of the mountains in our area. And in that moment, what I realized, we made a little connection, had a little bond, and I really think that helped make the very difficult life altering discussion we then had, maybe a little easier. It flowed a little more smoothly. It certainly did for me and I think maybe even for the doctor.

04:27: First medicine: making a human connect with healthcare providers: And,so, the lesson I learned from that very first experience was the power of making a human connection with my healthcare provider. And this is something I've tried to do ever since. And I've always found that if you just make that human connection, you just get a little rapport and build a little relationship. And I think that just makes for a richer, fuller dialogue. I think it also helps the doctor see you as not just a series of blood counts on of lab report, but as a human being, which in turn I believe helps them treat you more fully and maybe even leads to better outcomes. So, who knows? But that's the first of what I'm going to call medicines today. Okay? And I have a total of 10 I'd like to share with you. So that was number one.

05:22: What is meant by “other medicines”? Now, let me tell you a little more about what I mean by the term "medicines." That's my actual medicine cabinet at home and it's filled with prescription drugs and over-the-counter meds and eye products. And by the way, I have a whole other cabinet about like that filled with just eye products. So that's one big burden I've been struggling with to this present day, but those kinds of medicines are the literal actual medicines, the sort of science-based foundation of my treatment. And I don't want to suggest, at all, replacements for any of those. Rather, what I mean by "medicines" with quotes around it are just those simple little things we can do to just manage our survivorship a little better. They're not miracles. They're just simple little tactics we can follow.

I've found that they're free. They're easy. There's no big deal. And maybe the most important thing I have found about these "medicines," in the midst of sometimes feeling so out of control during our cancer adventures, which I'm sure many of you have felt at times. I think that's a real stressor. So, what these "medicines" are just little things we can do and things we can control. Okay? You get a little sense of managing things in the midst of the chaos of your cancer journey.

And finally, one more thing I want to say about these medicines. I am not into preaching and telling you, "You should try these. You need to do this." I don't like it when people do that to me, and so I'm not going to do that to you. All I'm doing is sharing these here. Everybody is different and some things work for some people and so forth. And ultimately, as you'll see at the end of this talk, my goal is not just to say, "Here's what's worked for me," but to get all of us thinking of our own "medicines" that we can do to enrich our survivorship. Okay?

07:18: Second medicine:  Plan and Prepare

So, let me lead into the second one by telling you another story. And many of these go back to early in my transplant journey and they resonate to the present day. So the second one goes back to the moment when my wife and I first went into the hospital that we decided was going to handle my transplant. It was our first meeting with the team. And I guess I could mention this because, Sue, you just mentioned them as a sponsor, but it was Dana-Farber in Boston. And it was an orientation meeting. And my wife and I were just wide-eyed and wide-eared. This is a whole new world for us. We had no idea what this was like. So, we just went in with just an open mind and the meetings were wonderful. We met with doctors and nurses and technicians and a social worker and they were so helpful. They were absolutely wonderful in terms of getting us information and taking the time. And we walked away thinking, "Wow, this is going to be a great place to do my transplant."

So, what happened was my wife and I were driving home from that orientation meeting going, "Wow, that was a great meeting. This place is wonderful. They were so nice." But then I started asking her some questions like, "Now, what did they say about blank?" And we couldn't remember. And then a couple of times, I said, "Oh, darn, I forgot to ask them about blank." And then one question I remember as we were driving home and I can't remember if it was my wife or me, but it was, "So what are we supposed to do next?" And we didn't know.

And what we learned from that experience, instead, I just learned the hard way, is the importance of doing something that I've tried to do ever since and that is manage our doctor visits. One little way you can just get a bit of control over things. And by that, the most important part is just plan and prepare. I found that just taking a little notepad like that picture on the left and jotting down symptoms ahead of time. And I don't just do it right before the meeting, but maybe for a week or two, I jot down very specific things I've noticed. And I ask my wife to join me. We work together as a team. What has she observed? What have I said to her? And together, we create a very specific list of symptoms that we can then present to the doctor.

And by the way, that's almost a side medicine in and of itself, is working with your partner if you're fortunate enough to have one. And that gives a richer bit of information to give to the doctor. So, when I go into the meeting and the doc says, "How are you doing?" I don't just give some big phrase like, "Well, okay, I guess, but blah, blah, blah." I have very specific things to present to the doc and that in turn helps them give you better treatment. Now, many of you also may find something when you go to doctor meetings that you might have a question you want to ask, but you forget to ask it or you never get the chance to.

And I think we need to empathize with doctors. They're under a lot of time pressure to keep moving. And what I always try to do is write down questions ahead of time, questions that I don't want to forget to ask because most likely, you'll forget or the meeting moves fast and you just don't get a chance. So, I'll jot those questions down. And sometimes, I'll even batch them together and say, "Hey doc, I've got three questions I want to ask you. Boom, boom, boom." That just helps get the information you need, and it helps the doctor and you work together to make it a very efficient, productive meeting. Okay?

11:13: Ask clarifying questions:  And you notice that bullet? It says ask clarifying questions. I think some people feel like they really shouldn't speak up, but if the doctor explains something in medical terms and you don't get it, I've always found, they're fine if you just say, "What does that mean in everyday language? Or what does that mean for me?" So that's what it means. Speak up, ask questions, of course, in a nice tactful way.

11:36: Leave meetings with a sense of next steps:  And one final thing I find in managing my doctor meetings is I always like to leave with a sense of, where do we go from here? Have a little road map. And sometimes, I'll leave a little blank place in the bottom of my notepad to just jot those things. So that's the second "medicine." Okay? Managing your doctor visits.

11:57: Third medicine: Use critical thinking and judgement

The third I'm going to lead into, as I'll do several times, with a picture and a quote and then you're probably going, "Huh? What?" Well, here's the story. Early in my transplant cancer adventure, word was spreading throughout the community, and friends and colleagues, that I was in a heap of trouble. And all sorts of people through the goodness of their heart, reached out with wonderful gestures and support, and it was just great. And part of that included giving us advice. And everybody wanted to share something they thought would be helpful like, "Read this book," or, "Talk to this guy who had cancer 10 years ago," or, "Eat this supplement," and so forth.

And we found some of the advice or the sum total of all the advice got to be a little overwhelming. And we started to feel, "Whoa, this is a lot to process." And that in itself created some stress. And then here you go. And then we had a friend who insisted that we juice our vegetables. She insisted to my wife that if she juiced my vegetables, and in particular, I guess she liked beets. So that's why I put the picture of beets up there. It would not only make me feel better and help my digestion, which was probably true, but she insisted it would cure my cancer. And we started saying, "That's sort of out there."

So, what we found was very important through this deluge with advice and suggestions and things tugging at us was to use some critical thinking and judgment to sort through all of the options out there. And that's because there are all sorts of things that are tugging at your attention. And I just remember some store in Boston, I forget what it was, used to have a tagline. "Our best customer is an educated consumer." Would like to think that really applies to being an educated consumer of all the products and treatments that people are tossing at you. And some of it just gets to outright quackery and snake oil and even scams. But I'm talking about the stuff that you might think is legitimate, but it really isn't the wisest course to pursue.

14:22: Stick with science:  And my wife and I have come up with the mantra, we stick with science. That's our foundation. And then we use good judgment and critical thinking as we go through and sort all of the other things that are tugging at us. Okay? And it's really important, we have found, to look in the mirror and recognize that we're vulnerable. All of us at some point or another have probably felt, "Oh my gosh, what am I going to do? What can help me through this, this nightmare?" And when you are feeling that way, you tend to grasp at things, hoping they'll help. And so just that self-awareness is part of using good judgment and critical thinking. And it's really helped my wife and me immensely.

15:09: Now, I want to give you a more recent example of that talking about vulnerabilities. Now, here I am. I talk about this stuff. I write about this stuff. And yet six months ago, I was having a flare up of skin GVHD, and it was really bothering me, especially at night. I couldn't sleep. And I was just at wit's end what to do. So I saw this thing on Facebook or the internet. It was some Beverly Hills skin product or something, and I scroll down, and boy, it sounded pretty good. And then you know how you get to the end and it says it's 29.95, but if you order now, it's only 19.95 and we'll throw in an extra bottle and blah, blah, blah. I fell for it. I just let my vulnerability cause me to spend 20 bucks for something that was just basically that. There it is, there's proof.

15:58: And I looked at the ingredients. They were just normal minerals and vitamins. But I realized, "Wow, that was packaged in a way that I paid way more than I needed to for that." And bringing it even closer to home, notice how people recently with the coronavirus and pandemic scare are sometimes seeming really vulnerable and there are those that take advantage of. Look at that. Immunity oil. Come on, give me a break. So critical thinking and judgment is that "medicine."

16:28: Fourth medicine: The power and value of numbers, metrics, and milestones. The next. I'm going to show you that staircase. That's the staircase in the actual condo where my wife and I were living when I had my transplant and came home. Now, that picture, it was sort of spruced up a little bit for staging to sell it. But when I came home from my transplant, I was really weak and I could barely walk up those steps. And I distinctly remember maybe the first day walking up to the bedroom, maybe doing four steps and then grabbing the rail and bending over and huffing and puffing. And then maybe the next day, I could do seven. And I remember when I finally made all 14 steps without stopping, that was a powerful, powerful moment for me.

17:11: Now, flash forward a little bit to the present day, you know what that is? That's a Fitbit. It's a little motion detector watch the tracks how many steps you take. And to this day, I find that really helpful to just track and give me a little incentive to keep moving. And my point here is bigger than just steps. It's the power and value of numbers, metrics, and milestones. And I found these very, very helpful. Whether they're steps or tracking your blood readings, also time, dates. Many of us are counting forward since our transplant. Days and years and anniversaries and birthdays or rebirth days and so forth. I find goals or markers and metrics give goals to shoot for. They sort of mark our progress.

18:06: And for example, with that Fitbit now, sometimes my wife and I go for a little walk in the evening and the Fitbit is pre-programmed. So when you hit 10,000 steps, it buzzes and flashes and gives you this little digital celebration right on your wrist. And it's like a reward. And sometimes we're coming home and we're at like 9,500 steps. And I go, "Hey, let's just go around the block a couple more times just so we can get that celebration of achieving that goal." So, it can help keep you moving forward, but also metrics and milestones help you look back and reflect on where you've been.

18:47: So all of it, I find really helpful but with one caveat, don't overdo it. I know people who are just obsessed with every little up and down of the stock market. Or I know runners, no disrespect to runners, but who just are so crazed about their time and their kilometers. So, it's all within reason. But I would suggest to anybody, think of specific numbers and metrics that are helpful to you. Okay?

19:15: Fifth medicine: The power of having phrases, images, metaphors:  The next one, this is a very special picture for me. This is a picture of my wife and me a couple of years, two or three years after my transplant. I had a very long, difficult recovery. But as you can see, we had made it back. And by the way, my wife had a very horrible orthopedic nightmare for those years as well. And this was a special moment. We made it back up to the summit of one of the peaks where we lived up in New Hampshire. And it's a great memory, but I also want you to look at the background. You see that backdrop? The ups and downs? That's what I've always referred to as peaks and valleys. And I keep remembering this picture and that phrase as something that has really helped me, peaks and valleys. It just reminds me that recovery and survivorship is not always a smooth linear path. And it just sort of almost gives me comfort knowing that.

20:14: And what I'm getting at is something much bigger than this. And I'm cramming a lot of things together, but it's the power of having phrases, images, metaphors. This is a whole world. I could probably do the whole presentation just on that, but I found those things really, really helpful. One thing that I say, just a little mantra, it's nothing fancy, but I just say, "Take what it gives you." And I'm having trouble keeping up with my wife on a bike ride, or I just can't keep working. And instead of just pushing myself to exhaustion, I just back off and say, "Take what it gives you."

20:48: I also like that serenity prayer. I sort of tweak it into my own way, and it's not necessarily a prayer, but the whole thing about control what you can control, accept what you cannot, and have the wisdom to know the difference between the two. That's been really powerful for me. And it's sort of a variation of that judgment and critical thinking I talked about earlier. So whatever phrases, metaphors, pictures, song lyrics, mean something to us, it's really important to personalize and find personally relevant things that just keep important ideas sticking with us and we can retain them more easily. Okay?

21:29: Sixth medicine: Blanket-kicking: Next. Now, this is a wacky one. Speaking of metaphors and crazy descriptions of things, blanket kicking. You're probably going, "What's that?" Well, we have this little cat who just every now... He's a sweet little guy, but every now and then, he launches himself at a folded blanket and he just starts kicking at it furiously. And we go, "God, that's hilarious." But what we realized is it's just sort of an outlet, a show of force, and it's a method to vent and let off steam. So, my wife and I have used the metaphor of our cat, little Gizmo, blanket kicking as a device to allow each other to let off steam, to vent the frustrations and disappointments we have. And sometimes we just say, "Yeah, I'm just going to blanket-kick a little here." Or sometimes, something spills out a little more intensely than we want and we just say, "Sorry, I was just blanket kicking."

22:28: But this particular device has really helped prevent the increasing tension that often happens with couples going through the healthcare challenges. And it's really enhanced our relationship. So, a "medicine" is a device to let off steam.

22:48: Seventh medicine: Humor: This one, I snapped this from my hospital bed one of the nights I was in hospital for my transplant and I was feeling terrible. I could barely get the camera up to take the picture of my brothers and their wives. They visited and brought in a copy of "Talladega Nights," the Will Ferrell movie. And they popped it in the screen. I could just barely hold the clicker to watch the movie, but I'll never forget, as I was feeling so miserable, the humor just feeling through my body and warming me and just lifting up. And the "medicine" is pretty obvious, but the power of humor. Humor, as the saying goes is just a great medicine. There's all sorts of medical things about humor and laughter, about blood flow and endorphins and dopamine and all that.

23:40: I told you I didn't go to medical school. So I'm not going to get too clinical, but there is research that talks about the value of humor. But I think for all of us, I just think it helps us cope and tolerate. And it also sort of re-frames the perspective sometimes, which I think is really valuable. And mostly, it's wonderful for building relationships with friends, spouses, partners, and even your providers. So humor, very potent medicine.

24:11: Eighth medicine: Writing about it is powerful:  Now, this one is also from my hospital stay, something I started doing and I've kept doing to this day. That's when I first came in, you can see I just had the catheters put in. And the first thing I did was pull up my laptop and start writing in a blog. And the lesson I learned from that, because my blood kept continuing, is writing is really, really powerful. But in any kind of form. I can do blogs and social media. Just getting it out there. Letting people know how you're doing is really helpful, but also, even if it's just a diary, a little scratch pad, just getting things out is just really, really wonderful. You can connect with others. But I found through the course of my own blogging and it turned into a book, as Sue mentioned, it's a source of self-reflection. So it's been a wonderful, wonderful thing to do, and I'd recommend it to anybody in one form or another. And it's totally therapeutic. Okay?

25:12: Ninth medicine: Find Purpose: The next to last is something a little vaguer, not quite as tangible, but it's what I call purpose. And again, there's a lot of research out there that survivors of any kind of medical challenges tend to have better outcomes, better lives, and actually healthier lifestyles afterwards if they have some sort of purpose. And purpose, again, is a really vague word, but what I mean by that, it's just something above and beyond just existing. And there's so many ways that we all can find various purposes. Sometimes, if we're working, it's maybe not just going through our job and getting our paycheck and paying the rent, but it's maybe accomplishing something or building something, things that are creative, hobbies, and artwork.

26:08: And a lot of us feel this calling is for survivors to help others with the community here or giving back. And in particular, I have been driven during my survivorship by the purpose of helping promote the word about bone marrow and stem cell donation and registration. And that's just been driving me and it just fulfills me. So whatever purpose any of us can find, it's a good idea to cultivate that and nurture it and build that into our life. I think it's a great medicine. Okay?

26:47: Tenth medicine: The power of appreciation:  Now, the final one is something that integrates a lot of the things I've mentioned. It's a song lyric, it's an image, it's a metaphor, and it's been real, real powerful for me. And I'll tell you a little story. Way back in one of the darkest moments of my journey, not just for me, but for my wife, we were in a really bad place. I won't even go into the details, but things were really bleak. And for some reason, my wife liked to listen to Leonard Cohen songs. Now, if you don't know who Leonard Cohen is, he's a Canadian songwriter who wrote really interesting songs with great lyrics, but sometimes they're sort of depressing and dreary. And we were listening to a song called "Anthem" at this time, and it was typical Leonard Cohen. Everything's depressing, everything's dreary.

27:41: But then he kicked in a line, or actually a two-line couplet, I guess, that just blew me away. So this song, "Anthem" is going on about how everything's messed up in life and there's a crack in everything, but the next line, "That's how the light gets in." The second I heard that and heard the word and pictured the image, it blew me away. It just filled me with a whole different perspective on how to frame my experience. And I've thought of that song every single day. And what that does for me is a way to remind me of the power and the medicinal values of appreciation. Appreciating things is so helpful to me.

28:31: It's the little everyday things and maybe the life-changing things. How we've changed as people, how we've grown. And to me, it's the unexpected things. The things that have come along in our cancer journeys that we never would have expected. And all of these things, it's to appreciate. Doesn't make all the bad stuff go away. It just gives you a little balance between the two. But just every now and then, trying to think of the rays of light that you can appreciate in your life, I find that really, really helpful.

29:02: I never expected to make such great relationships with my doctors. I never expected I would write a book about it. I mean, I never in a zillion years thought I'd write a book. I never expected this journey would actually deepen my relationship with my wife. And these are all magical unexpected things that I appreciate. And I never expected that I would have the joy of working with others and meeting and sharing stories with wonderful folks like all of you. So there's a lot to appreciate, and I want to encourage everybody to just think of the things you appreciate and the things that have enriched your life, and that'll just help counterbalance some of the stresses we all feel.

29:50: So there's my reference list of the 10 "medicines" I've shared today. This is just sort of a Whitman sampler. I've got tons of others and I'm sure many of you have many, many more. But I guess this is going to be recorded, so you can always refer back to these. And again, if you want to borrow and take them, be my guest, but I'm not trying to preach at all. What I am trying to do is let all of us know that we all have a little power to take control over the things we can control. And I encourage everybody to seek out and cherish the "medicines" that work for you.

30:28: So thank you so much, folks. I just want to close with the contact information. I encourage you to stay in touch with me, track me down. There's my LinkedIn. I'm in Portland, Maine. There's my email address. You can look me up on Amazon. Just look up my name or "Six years and Counting" is the book I wrote. And guess what? If you check back with Amazon later this year, you're going to see another book. And you know what the title is going to be? "Many Medicines Besides Drugs." So, if you have some suggestions or input or stories you want to share, please track me down. I'd love to put you in my book. So it's been a joy and a pleasure sharing my story and my medicines with you. And I encourage you to take control of what you can, and I wish you all the best in your survivorship. Thanks a lot, folks. Take care. Have a great symposium.