Managing Emotional Challenges after Transplant

Mindfulness can be a helpful tool to manage the stress and anxiety survivors feel long after transplant.

Presenter:  Melanie Stachelski MA, Colorado Cancer Counseling and stem cell transplant survivor.

30-minute presentation followed by a 30-minute Q & A session

Summary:

Recovering emotionally after a bone marrow, stem cell or cord blood transplant can take many months for survivors and family members alike. Living in the present, rather than dwelling on the past or fearing the future, can improve survivors’ emotional health after transplant.

Highlights:

• Anxiety, depression, worries about tests and future health are common among transplant survivors

• Mindfulness —being present in the moment—can help transplant survivors manage overwhelming emotions

• Professional counseling, support groups and other forms of peer-support are helpful tools survivors can use to address emotional challenges after transplant

Key Points:

04:47  How to use mindfulness to manage overwhelming emotions

07:04  How to practice deep breathing

08:29  Using a personal “body scan” to help you relax

10:34  The transition from being sick to being healthy can be difficult emotionally

11:52  Square breathing

14:32  Why transplant survivors may feel depressed months after transplant

16:07  How to find a professional counselor to help you manage emotions after transplant

18:38  Post-traumatic stress syndrome in transplant survivors

22:00  Getting beyond the phrase ‘hey, just be grateful you’re still alive’, and beyond survivor guilt

24:30  How to take mindfulness exercises to a more formal level of meditation

Transcript of Presentation

00:00  Introduction and background of speaker:  Oh, thank you so much. Thanks everybody for being here. My name is Melanie Stachelski and I'm a therapist at Colorado Cancer counseling in Arvada, Colorado. And as a therapist, I specialize in helping people through every stage of a cancer diagnosis. So, from that moment that someone hears that they have cancer, to people who are months and even years out of treatment but they feel like they're still struggling to live their best life.

Every one of my clients would tell you that the physical toll of cancer was enormous, especially going through a transplant. But most of them would also say that the most difficult aspect of having cancer is actually the mental, emotional, and spiritual turmoil that a cancer diagnosis brings. If any of that sounds familiar to you, I want you to know you are not alone.  Today we're going to talk about how to manage the emotional roller coaster of going through a transplant.

00:56  Overview of presentation:  We're going to talk about some of the surprising and sometimes counter-intuitive thoughts, feelings and emotions that are actually very common among cancer survivors. I'm going to introduce several simple strategies for how to manage those emotions—and there are tons of valuable resources out there for getting more support on your cancer journey— so we're going to talk about lots of those.  It is my hope for all of you today, that with a few simple tools and a little extra support, you can transform your experience with cancer from one of fear and anxiety to something really beautiful, full of meaning and purpose.

01:33  Speaker’s personal experience going through transplant:  These topics are absolutely my passion, and it's personal for me. I became a cancer therapist because I'm a transplant survivor myself. This is me, just about eight years ago, I was diagnosed with AML, acute myeloid leukemia in 2009, and I had an allogeneic stem cell transplant here in Denver in 2010.  My donor was an adorable 21-year-old guy from Germany named Florian.

When I was going through treatment. I can't tell you how helpful it was to talk to other people who had been through the same thing and that's why I think conferences like this are so important. There's something incredibly powerful about talking to people who can truly say, ’I know what you're going through’.  Often these conversations will lead the person to sigh with relief as they say, ‘ You felt this way too. I thought it was just me’. Everyone's experience with cancer is different, but there are many similar threads, and after talking to so many people at all stages of a cancer diagnosis, I have found these surprising and sometimes counter-intuitive thoughts and feelings to be very common.

02:40  How to manage anxiety over routine medical tests after transplant aka ‘scanziety’:  So here's the first thing that I hear people say a lot. I have a routine test coming up and I'm having trouble sleeping.

So, someone told me that every once in a while, he would wake up in the morning with this aching jaw because he had been grinding his teeth while he was sleeping. And then he would look at the calendar and realize, ‘oh, I have a doctor's appointment coming up in a few days’. So, it was like his body started feeling worried even before his mind was. 

In the days and weeks before your next blood test or scan, even if you have little reason to be concerned, you may experience increased anxiety, fear, trouble sleeping, and feelings of overwhelm and worry. This has actually been given a name, it's called "scanziety" or test anxiety and it's really common for people with cancer. But if you really stop and think about it, most of these overwhelming emotions happen because we are worrying about what might happen in the future. These are all the ‘what if’ questions, ‘what if the treatment doesn't work?’

What if the side effects from treatments are unbearable, and what if my cancer comes back?

03:48:  Anxiety caused by dwelling on the past:  It's also common to spend a lot of time dwelling on the past. How did this happen? What did I do wrong? But the truth is that no amount of worrying will change the future and no amount of regret will change the past. It will only add to your fear, stress and anxiety, and here's the crazy thing:  when you can stop thinking about what might happen in the future and stop dwelling on the past, but instead bring yourself into the present moment right here, right now,  most of the time things are actually okay. Most days are good days, the present moment right now is all of us here in this room, at this conference with this great group of people.  Right now, this is a good moment and this leads me to my most important thing that I want to talk about today.

04:47  How to use mindfulness to manage overwhelming emotions:  Okay, so if there was one thing that you leave here with today, it's this mindfulness, and specifically how to use mindfulness to manage the overwhelming emotions that so many of us experience after a cancer diagnosis. So, to start with, I want to be clear that mindfulness is not sitting on a cushion, meditating for hours. It's not going off on a silent retreat somewhere for several days. It's simply learning how to live in the present moment. It's how to really pay attention to what's happening right here, right now, and this is actually not very normal for us humans. Instead of our minds being here, we're usually running through our to do list or thinking about what's going to be for dinner tonight. And for those of us in this room, it's worrying about what our next test results are going to show and what are doctor's going to say.

So, here's one of my favorite cartoons.  Are you mind-full or are you mindful? So, okay, so when the dog is at the park with the beautiful trees and the sunshine, what is he thinking about?  He's thinking about the park and the beautiful trees in the sunshine. But the human, the person, is thinking about work and the bills to pay and everything except what's right in front of him.

06:04  Mindfulness is attention to the present moment without judgement:  Here's my definition of mindfulness:  attention to the present moment without judgment. So why is mindfulness so important? Because this is how you can bring more peace and more joy to this chaotic and unpredictable journey through cancer. Because in the present moment, most of the time things are actually okay.

So, I want to quickly teach you some very simple tools for practicing mindfulness and living in the present moment. And here's my disclaimer. Okay, these are so simple. You guys are probably just going to roll your eyes at me, but I promise you these simple techniques have the potential to change your life and they can profoundly affect and change your experience with cancer. S,o the next time you find yourself worrying or feeling anxious about the future, when you're waiting for test results or you're waiting to see your doctor, I want you to gently shift your attention to focus on your breathing.

07:04  How to practice deep breathing:  Okay, so I'd like all of you to practice taking a few deep breaths with me. Okay? So, I want you to just put your feet flat on the floor. You can rest your hands in your lap. You can close your eyes if you'd like or just find a gentle gaze and just start to take a few deep breaths. And as you're breathing, I want you to observe your breathing, as if you were a scientist who has never encountered breathing before. Be curious about each movement and sensation.

Notice the air as it comes in through your mouth or nose. It goes down to the bottom of your lungs and notice that it flows back out again. Notice the air moving in and out, how it is slightly cooler as you breathe in, and slightly warmer as you exhale. Notice the subtle rise and fall of your shoulders and the gentle rise and fall of your rib cage and abdomen. Keep your attention here, noticing the movement in and out of your breath.  And the trick here, why mindful breathing works, is that not only is this deep breathing physically calming you down and relaxing you, but focusing on your breath also forces your mind to come out of the story it was telling you about the future and come back to the present moment.

08:29  Using a personal “body scan” to help you relax:  The next technique I want to offer is called a body scan, and it's just what it sounds like in that you're going to use your attention to scan your entire body.  So, you can start by bringing your attention to the very top of your head. Just notice any sensations that you feel there, and as you focus your attention there, just relax and release any tension that you might be holding in that area.

Then slowly move your attention downwards to your forehead. Again, noticing any sensations there and releasing any tension that you might be holding in your forehead. Now move your attention downward to your face and jaw. I'm always surprised to realize how tightly I'm holding my jaw. See if you can relax any tension there. Now move your attention down to your shoulders and upper back. Take a deep breath here and release any tightness in your back and shoulders. No, I won't go through the entire body scan today, but you just continue moving downwards. Drawing your attention to each part of your body, releasing that tension all the way down to your toes.

I think it's so, so interesting that that jaw area, your forehead just to relax that area and our shoulders. We're just carrying so, so much tension, so that's a great one. I especially love the body scan when I'm trying to fall asleep at night or when I wake up in the middle of the night and I and I can't get back to sleep. I don't know about you, but that is the time that my mind goes crazy. I'm really thinking of all the worst-case scenarios. So again, focusing your mind on that body scan is really helpful and it's a great one to listen to and have someone guide you through it. If you just google body scan meditation, there's a lot of great guided meditations on the Internet. So, just find one that you like to listen to until you can get the hang of it.

10:34  The transition from being sick to being healthy can be difficult emotionally:  Here's the next thing that I hear people say a lot. I should be happy that I'm finishing treatment, but instead I feel scared.

Yeah.  I heard someone say, once, that the worst two days of a cancer patient's life is the first day that you hear you have cancer. And number two is the day you hear you're done with treatment and you don't have to come back here anymore. And I know at first glance, that sounds crazy, right? Because I know I'm sure a lot of you can't wait to get done with all of your appointments, but for someone who's used to being constantly monitored and rarely alone, this new freedom can make someone feel very vulnerable. They may now find themselves wondering, ‘but who will notice if my cancer comes back and can I really trust that I'm okay, like you're telling me I'm okay, but can I really believe that? And okay, I'm done... so now what am I supposed to do?’

This transition from being sick to being healthy can be really difficult. There is a tension that exists here, because you're going back to the life you once knew, but you may not feel like the same person you were before. So, again, we have to really practice living in the present moment so that our minds don't get the best of us.

11:52  Square breathing:  Now if you're the kind of person that gets easily distracted or your mind keeps wandering— so, first of all, that's completely normal, that's just how our minds work— but you might try adding this next technique which is called square breathing.

So, you're going to draw a square in the air with your finger. Each side of the square represents an in breath and an out breath. And as you trace the square, you're going to breathe in for a count of four and then breathe out for a count of four.

So, take a few breaths with me here.  I'll count out loud and you can just follow along. Okay. Breathe in, two, three, four. Breathe out, two, three, four. Breathe in, two, three, four. Breathe out, two, three, four. Breathe in, two, three, four. Breathe out, two, three, four. Breathe in, two, three, four. Breathe out, two, three, four. This is a great one. You can also replace the counting with a favorite phrase or mantra.  And again, you would just repeat it four times to complete the square. So, an example would be, ‘every cell in my body is healthy. Every cell in my body is healthy. Every cell in my body is healthy.’ So, again, you're pairing that deep breathing and relaxation with, and giving your mind, something to focus on.

13:22  Celebrate your transplant birthday on your own terms — define what your life will be like going forward:  I don't feel like celebrating yet. So, some people want to wholeheartedly celebrate a big milestone, like your 100 days post-transplant or finishing treatment. And others find that they are reluctant to celebrate.

Sometimes this is because the people around them associate the end of treatment with getting back to normal. ‘Oh, you're done, you're done with treatment. Now things can go back to how they used to be and you can go back to the person that you were before all of this’.  But it's so common to push back against this idea with the thought, ‘but I'm not the same person that I was before I was diagnosed with cancer.’

I believe that the beautiful opportunity after cancer is to deliberately create your life in a way that is more authentic and fulfilling so, by all means, celebrate. Throw that big party, but do it on your terms. Things don't have to go back to how they used to be.  And here's a question for you to contemplate. What changes do you need to make in your life in order to be the most authentic, vital, and healthy you?

14:32  Why transplant survivors may feel depressed months after transplant:  I finished treatment months ago, so why do I feel so depressed?

So, I want you to think of a time that you've had something scary happen to you while you were driving. Okay. Like hitting black ice, or maybe an animal ran out in front of you, and just think about how your body just kind of goes on autopilot. You're not even thinking about what's happening until the episode's over and you're safe, and then it usually takes a few more seconds for the emotions to hit you.

I know for me, I'm just in shock and then I'd probably just burst into tears after a few seconds. Well, the same thing can happen after a cancer diagnosis. During treatment it can feel like being on autopilot. You have a sort of tunnel vision that keeps you focused on just what your next step is, without looking around too much to take it all in.  This is why it might not be for months, or even years, after treatment that someone will finally decide to reach out for help.  As treatment finishes and the dust finally begins to settle, this is the time where the dazed patient can look around and think, ‘what in the world just happened to me? Did I really just go through all of that?’

Often, the person will realize that they have become very good at surviving, but they have forgotten how to live.  In this time of reflection, processing and integration, it can be very helpful to reach out to a trusted friend, someone else who's gone through this, or a professional for help to manage those complex feelings, and for direction on how to move forward. So, what are the different avenues of support that are available to you?

16:07  How to find a professional counselor to help you manage emotions after transplant:  If you feel like you could use some additional support, you may want to talk to a therapist, a psychologist, or social worker. Ideally someone who's familiar with oncology. Many cancer clinics and hospitals have psychologists or social workers on staff that are available for you to talk to. They may also have a list of therapists in the community that they know and they trust that they can refer you to.

And if you're hoping to use your insurance, you'll want to ask your insurance company for a list of their approved providers.  These resources here for CancerCare®, Be The Match®, APOS & Cancer Support Community® - those are just a few of the ways you can connect with the professional over the phone, online, or in person. And here's my little tip about finding the right therapist. Okay. I, I like to say that finding the right therapist is kind of like dating, because you're not always going to find the right person on the first try. Okay. So, every therapist has a different personality, a different methodology. So sometimes you have to try a few people to really find a good connection. And I get so sad when people say, ‘oh yeah, tried a therapist and I just wasn't feeling I so, I gave up on that’ because you really have to keep trying to find the right fit, and it will make all the difference. So, so keep trying.

17:23  Peer support can be helpful for transplant survivors:  Sometimes the best support you can get is from someone else who's been through this, a someone who can tell you what their actual experience was like. So, these are some examples of blood cancer and transplant specific programs that will match you with another person who's a similar age, similar diagnosis, and a similar treatment plan. So, you can talk one on-one to find out what someone else's experience was like.

17:48  Some people love the dynamics of a support group:  A lot of people love dynamics of a support  group. This may be one of the only places in your life where you're in a group of people who can truly say, ‘I know what you're going through’. Some support groups are for all types of cancer, some are disease specific.  There are also support groups for caregivers and families and there are online support groups for people who prefer interacting online.  And lastly, there are so many wonderful community groups and nonprofits that get cancer survivors together for social outings, outdoor adventure, fitness. There's all kinds of different interest groups, and the young adult community also has several great organizations just for that 18 to 40 age range.

18:38  Post-traumatic stress syndrome in transplant survivors:  I wish I could just move on and forget about this, but the memories and the emotions keep coming back.

Okay. I talked to a woman once who said she would race to her dishwasher as it was about to turn off, to turn off the timer, because the sound of that alarm reminded her of the beeping on her IV chemo pole.  Another guy I talked to, he really wanted to go back and volunteer in his cancer clinic and he was months out of treatment, feeling great. So, he goes back in, steps off the elevator onto the bone marrow unit and has a panic attack months after treatment. And I'll tell you my personal story about this. I was in a yoga class, again, several months after treatment feeling great. And in that final relaxation, the yoga teacher said, ‘now I want everyone to honor your heart, draw your attention to your heart. And in that moment I had this flash of my tri-fusion IV port and how it was hooked up to my heart and pumping all of that chemo and all of that medication through my heart. And I had that - just in that moment, just this awareness of everything my heart had gone through. And in the middle of this yoga class, I burst into tears. So, what's going on here?

There's more and more research showing that cancer survivors can have posttraumatic stress disorder or PTSD. Most people associate PTSD with people who have seen combat in the military or experience some other horrific event. We don't often give enough credit to how shocking, scary, and life changing a cancer diagnosis can be. It's amazing how certain situations, sounds, smells, or even a commercial on TV can bring back a flood of memories and emotions.  Notice if something like this happens to you, and offer kindness to your body with the acknowledgement that you have indeed experienced and survived a trauma.

20:45  Know when to ask for help:  Some of you might feel on the fence about all of this and wonder, ‘yeah, I've felt this way sometimes, but at what point do I actually need to reach out and ask for help?’

So as a therapist, I'm obviously biased and I think that everyone can benefit some from some extra support on their cancer journey.  But when do you really need help?

So, this is kind of a tough question to answer because if you look at the clinical definition of depression, it basically reads like a typical day in the life of a cancer patient, okay? It's things like sadness, irritability, fatigue, changes in sleeping and eating, difficulty concentrating, loss of interest in things that we use to provide pleasure, unexplained physical symptoms like headaches and body aches and thoughts about death. Okay, so welcome to the world of cancer. So the important thing about any of these thoughts and emotions that we're talking about today is do you feel this way occasionally, or is it constant? Do you feel this way all the time? If it's getting in the way of you living a normal day-to-day life?  [If yes,] then you should definitely ask for help. And if you're having any thoughts of suicide, you absolutely need to tell someone.

22:00  Getting beyond the phrase ‘hey, just be grateful you’re still alive’ and beyond survivor guilt :  Okay, these next two things I'm going to talk about that I hear people say, they're kind of like two sides of the same coin. Okay? So the first thing is, I know I should just be grateful to be alive, but I want more.  The side effects of cancer treatment can make day to day life really uncomfortable or even unbearable. Cancer patients often suffer from fatigue, loss of strength and stamina, sexual dysfunction, loss of libido, physical changes such as weight gain and scarring, not to mention depression and anxiety.

But patients often have a hard time talking to their medical team about these issues because they may not seem important compared to the overall big picture of, ‘Hey, but at least you're still alive’.  I encourage people to be their own advocates. You can be grateful to be alive and you can insist on having a good quality of life. There has to be a life that you feel is worth fighting for.

And here's the flip side to that coin. ‘Okay, who am I to complain? So many people have it worse.’ There's a double edge sword to fighting for a good quality of life. Sometimes, the better you begin to feel, the guiltier you will also feel. You may find yourself thinking, ‘why am I doing so well and other people are really suffering?’  Or, ‘why did I survive and so many other people did not make it?’ This is called survivor's guilt. It may not seem like there's any rhyme or reason to why someone lives and why someone else dies, and that can be a very heavy burden for survivors to carry. 

And you know who else carries this burden? Caregivers and family members.  The rate of emotional distress is so high in caregivers, but they're the least likely to ask for help because they think, ‘who am I to complain? I'm not the one with cancer.’

My best advice is simply this:  Say Yes to all of the help that is being offered to you and then go forward and live your very best life in honor of everyone else who suffered, everyone who didn't make it, and everyone who helped you along the way. You are not serving anyone by staying sick or staying small. Instead, make your life a tribute to their memory and their legacy.

24:30  How to take mindfulness exercises to a more formal level of meditation:  So the next time you notice that you're feeling anxious, fearful, or worried about the future, I want you to gently acknowledge those feelings and then try one of these techniques: mindful breathing, where you might take 10 slow, deep breaths, noticing all the sensations in your body as you breathe; square breathing, where you're counting to four on the inhale and the exhale or repeating a positive phrase or mantra; or a body scan, where you're drawing attention to each part of your body, relaxing and releasing tension. You can use any of these three techniques in the moment to de-escalate when you're feeling overwhelmed with anxiety; they can all be used to bring you back into the present moment.

And when you're ready to take your mindfulness practice to the next level, you might want to consider a learning a more formal meditation practice. There are tons of great resources out there to help you get started. Are there apps that you can download onto your phone. Two that are really good are called Headspace® and Calm. They're both free and they're a great resource for people just starting out.

There are also mindfulness and meditation classes being offered in a lot of cancer clinics now and in hospitals, as well as in yoga studios, rec centers and schools. So, keep a lookout for those classes being offered in your community.

And the Internet is a wealth of guided meditations. Just Google guided meditation for cancer or a guided meditation for pain or healing.  I'd encourage you just to listen to several and find one that resonates for you. My hope is for each of you that you can use these tools to transform your experience with cancer from one of fear and anxiety to something really beautiful and maybe even a little sweet.

26:18  Mindful eating:  So, this leads me to my last mindfulness technique that I want to share today. I would just call it mindful eating.

So, the volunteers are passing around some chocolates. I'd like you to just take one, but don't eat it yet. Okay?  Just place it in your hand and start by noticing the colors and the shapes and the wrapping. Notice the weight of it in your hand. Examine it closely: touch the foil with your fingers and feel the texture. Look at the different sides of the chocolate and notice any place that the light reflects off of the wrapper or any shadows. 

Now begin to slowly open the wrapper. Listen for the sounds of the foil as it opens and tears. Notice the movement of your hand, fingers and arm muscles as you open the chocolate.  Raise it to your nose and smell the chocolate. Slowly breathe in several times, focusing on the different smells Does smelling the chocolate trigger anything else in your body? Is your mouth watering? Are you having thoughts like, hurry up and let me eat this chocolate? Why is this taking so long? If so, just notice those thoughts and bring your attention back to smelling the chocolate.

Now slowly take a bite, but don't chew or swallow it. Instead, just notice the feeling and the taste of the chocolate in your mouth. How does it feel as it melts? Notice the taste and sensations of the chocolate on your tongue. Now slowly swallow the chocolate, focusing on the sensations as it moves down your throat. Was this different from the normal way you eat a chocolate?  And here's the important question. How can you experience more moments of your life like you experienced this chocolate?

Which leads me to the last thing I hear from so many people with cancer. It's some version of this: Cancer was the worst of times and it was the best of times.

A cancer diagnosis is one of the worst things that a person can experience, but it also has a way of highlighting what is truly important in life, and that can make life intensely vibrant and sacred. I heard someone say that life after cancer, for her, was like living in technicolor. The grass had never been greener. The flowers more fragrant, the air fresher and loved ones more cherished.

The beauty in cancer comes from the increased desire to pull what you love closer to you and to let go of what is no longer serving you.  Don't sweat the small stuff.  So, go out and use these mindfulness skills of attention, and curiosity, and being really present in your life, to savor every moment, there with the people that you love, doing what you really love.

 And I want to end my presentation with this quote that I found when, when I was going through my transplant and it really, it meant a lot to me.” It's important not to discount the idea that in a crisis, you may be having the time of your life.”

30:04  Mindfulness resources:  So I've put all the written instructions for those mindfulness techniques on my website, this link here. I have all those techniques, plus a big list of books and articles and other mindfulness resources so you can download that all there.  And with that, I'd just like to say thank you and I'd love to take your questions. I'd also love to hear if you'd like to share a technique that has worked for you for managing your emotions, and [that] you feel that you'd like to share with the group. I would love to hear that as well. So, any questions or share a technique if you'd like.

30:48  Audience comment about Tai Chi:

Audience member:  Hi, I'd just like to second the thought about some of the techniques, like yoga.  I participate in Tai Chi and I'd started Tai Chi shortly before I got my diagnosis, and I found it to be so helpful. The mindfulness and the stretching exercises, the group participation, all of those things have been very, very helpful for me. 

Ms. Stachelski:  Yes, I agree. And how lucky you were to have a little taste of that before you went into treatment.   had the same experience, where I knew a little bit of mindfulness, a little bit of just some deep breathing.  So, when I was in those really scary appointments, at least I had a few tools, and it's a huge driver of why I wanted to learn more about this, because just to offer those resources, like in the moment there are ways that we can use to de-escalate ourselves, and then to be part of a community like that—it's just going to be so invaluable for your healing.

31:48  Comment from audience member about the value of support groups:

Audience member:  Thanks Melanie. That was great. I just want to reiterate the whole thing about getting into a support group. And for me, and for the people in our support group, I think the caregivers got as much out of it as, as the patients did it. And I think it's really important to remember your caregiver at all times.

Ms. Stachelski:  Absolutely.  I wonder how many of you have felt like the people in your life just don't really get it, and they can be so supportive and so positive and they want to be there for you one hundred percent, but they don't actually know what it's like to be walking the path that you're walking.

And the same thing for caregiver, out in their world. Nobody knows what it's like to be in that kind of role.  So, number one, connect with other people who are going through this, whether it's a conference like this or a support group. That peer peer-mentoring, it's so, so beneficial. And again, the caregivers, you've got to take care of yourself. That's, I think something that really slips through the cracks. Caregivers want to know what I can do for the patient, but the number one thing you can do is take care of yourself, because if you're not in a place to be able to give a hand, no one's going to be there for that loved one.

33:00  Audience member comment about bringing something special with you from home to calm yourself:  I was just going to say that it doesn't always have to be breathing to calm yourself down. I fully admit that I was 27 and I ended up taking a stuffed animal everywhere with me. And no matter how bad the news was, just having that one comfort from home always with me made it a little easier to handle. So, it doesn't matter how old are you are, if it's a piece of a blanket you love or a certain piece of jewelry that you think brings you luck. It doesn't always have to be just remembering to breathe.

Ms. Stachelski:  Absolutely do whatever works for you. I always say try everything and then, if it resonates with you, keep it. If it doesn't move on, right? But you just have to create your own path of healing and what works. The other thing I love about that is, after a cancer diagnosis, it's the excuse that you need to do whatever you need to do to get better. You do not have to care what anybody else is thinking about what you, what path you've chosen. It's that excuse to be authentic and true to who you are and what you know better, what works for you.

34:11  Audience member comment about being afraid to make plans for the future:  So cancer did a good job of pulling me into the present, just because you don't know what's going to happen. But, one of the struggles I've had— and I was curious about kind of your feedback on —is so now that I'm past that, and I'm starting to feel healthier, I worry about future planning or setting goals again. Because I don't know kind of what's going to happen, and I don't want to hurt myself or other people when I can't make things happen that are future related.

Ms. Stachelski:  Yeah. I think that's one of the confusing things about mindfulness because I'm saying be present, be present, don't think about the future. But of course, every one of us in this room has to do a lot of thinking about what our future is going to be like just to manage everything that's going on.  And so, I think that the important thing is, how can you be planning and thinking about the future without this story attached to it, so that you can make the plans that you need to.

But then I wonder if for you, if you're trying to make this really positive plan— something with your friends or family— but attached to that is the story of ‘what if I'm not well enough, but what if I disappoint everybody because I can't show up, or what if I don't even make it that long’?  So, you've just taken this beautiful experience and added all of this extra anxiety to it.

There's a Buddhist phrase that that's called, first dart, second dart, where everything in has a lot of challenges that are just naturally going to be there.  As they say life is suffering, right? So inevitably there's going to be hiccups along the way, but as humans, the second dart that we add is all that story, all that worry. And, so, we've just taken something, because you don't know what's going to happen, maybe something bad will happen, but you've just compounded all of the suffering by adding the story. So be present and enjoy that life, make those plans, but try and notice when your mind has gotten caught up in the story, and just notice and say,’ I was telling a story about what might happen’ and then just bring it back to what you know is true, which is right in front of you.

36:33  Audience comment that writing about your experience is a good way to get your feelings out:  When I got diagnosed, I was a sophomore in college and I was an English Writing major. And after I got better, I turned my final thesis as a senior into a writing project of how everything I went through transformed me from the day that it started to how I feel about it now. And I've continued to write not as much as I want to, but it's helped a lot to see how I feel about things that happened and how things are going to happen. So, writing is a really good way to get all of the feelings out.

Ms. Stachelski:  I love that. What a beautiful gift you've given yourself to process it that way. And then to have that to look back on, to show how far you've come through all of that.

There's a lot of research that backs up the therapeutic benefits of writing.  Sometimes you just have to get it out, whether it's in the form of a blog to other people in your life, or just something just for yourself that no one else will ever read. Just getting it out onto paper. And a lot of people say, ‘I would never want to remember any of this. I don't want to take pictures. I don't want a journal. I don't want to remember’. But you'll be surprised, as you move out, because it is this reflection of how far you've come and how you've become this different person. So, I love that you used that skill that you already had and that passion you already had to really create a great healing tool for you

38:04   Audience member comment on the value of counseling:  On that, I like to write too, and I knew I had a need to process a lot of turmoil that was going on.  But chemobrain got in the way. I really struggled with the challenges of writing something that worked for me. And, so, I sought out counseling and I had to, like you said, aggressively push to find the right connection.  But once I did it, it amazed me what happened.

I thought I was going to have an experienced social worker in the world of cancer management tell me a whole bunch of stuff that would help me. Instead, I just sat there and told my life story and she hardly said a word. After six hour-long sessions over several weeks, I knew I was done and not done for life. But I had reached a point of closure. Yes, I guess it’s the best word. So the counseling for me had a humongous impact, but it really wasn't what I heard it was—what came out of me, and hearing my own descriptions of things that I didn't even know how to articulate well. So just wanted to throw that out.

Ms. Stachelski:  I love that. And it sounds like you've found a great therapist who lets you have the experience that you needed. And I wonder if any of you can identify with this , as the patient or the caregiver, you have to work really hard to take care of the people around you. Everything's okay. I'm doing great.  We're going to fight this. We're going to beat this. I'm working really hard so that you don't have to worry about me. And sometimes therapy can be this hour where you can be whoever you need to be. You can be angry, you can be bitter, you can be sad. You can say, ‘I don't want to do this anymore’. And that, that person is just there to hold that space for you because you might not have another hour in your life where you can let all of that out, and not worry that the person hearing it can't handle it. So sometimes you just need to tell your story in the most authentic way. And I love that. That just brought that closure that you needed. That's beautiful.

40:35  Audience question about setting boundaries in relationships after transplant:  I wonder if you could address the relationship, that is with people who are demanding, or dysfunctional emotionally or a pulling from your life, that you don't have the stamina to continue to give as you did before. And hence, you have to establish boundaries which might hurt others that aren't in a place of emotional health or even physical health. And, that's in our place because his particular profession involves that kind of interaction. There's not a person that comes to see him who isn't hurting and in physical pain, as a physician. So just would like to address that because I see that still weighs on him not only professionally, but also in and social environments.

Ms. Stachelski:  I hear this so much that you inevitably run into people in your life, in your close circles, that are so draining. And they don't understand, and you're just using so much of your energy to try and manage these people.

And again, one of the beautiful parts of cancer is that it becomes so clear in your life what's working and what's not working. So, the people who are taking too much, and drawing all that energy, you don't have the luxury of expending that energy right now. It's literally going to take a physical toll on you. And I know that boundaries are not comfortable for a lot of people, but it is essential. You have to be so protective of your emotional energy and your physical energy because that's what you need to survive right now.

And so, I think a lot of avenues, whether, if this works in your life, of designating someone who is kind of that communication barrier in between your family and the surrounding community or maybe setting up that blog, or some kind of email communication so that you're getting the information out that you need to and they, people, can learn about what's going on, but you don't have to interact with those people.  I don't know if it's part of your job, I know that that gets really difficult.  But it's the most important thing you can do right now, to protect your energy and protect your well-being and your healing

43:28  Audience comment/question about trying to do too much so that others don’t think less of you:  In juxtaposition to what was just asked, I'm my own worst enemy. I went back to work full time four months after transplant. I was working part time from home two months after transplant. And I just kind of wanted to pretend it never happened. I think the fear is that people will think I'm weak, that I'm lesser than I was before.  And I'm a President, CEO, of a nonprofit organization, so high visibility. And that's what drives me, I think, to sometimes bad behavior because I don't give myself enough rest. I don't give myself enough attention out of this fear that it'll look like I'm less than what I was.

Ms. Stachelski:  Absolutely.  And that's why I think that on top of the physical toll of cancer, that the mental toll is so excruciating because, you know, for someone like you who's so driven and that's so much a part of your joy and purpose in life, to take three months and sit—that 100 days post-transplant— and really take care of yourself and do nothing can be so, so hard to do.  So, to treat yourself with kindness, that's absolutely what your body needs.

I think people get so frustrated because they expect I should be back to normal by now. I should be further along than I am. And the reality is of what our bodies have been through —a transplant—takes a lot longer than people expect to get back to functioning.  And yeah, you want to be seen as not a cancer patient, that there's so much more to you than cancer, and so that you might overcompensate and do more so that people don't see you like that.  I think sometimes we have to have the really courageous conversations with the people that matter the most. If you feel like you're being, maybe, looked over for a project or treated with kid gloves when you really don't need it, if it's someone that you really value— that relationship— to have that honest conversation of, ‘Hey, when you did that, that really hurt my feelings. I have some limitations right now, but I'll let you know if I can't handle it. But until then I want you to just treat me like you would anybody else. ‘

flip side of that, that other people talk about is, ‘but you look so healthy, you must be fine. You must be back to normal’. So a lot of people deal with the other side of that, of ‘I know I look fine, but I am really struggling.  My fatigue is just unbearable or I'm having all these side effects.’ So, you look outwardly healthy, but people don't understand that you're still in the midst of it.

And again, those courageous conversations with the people that matter. This is not just a random person in the supermarket that you don't have to worry about, but if it's someone in your circle that you really care about, let them know. ‘I know that I look like I used to, but I'm struggling and I'm not the same person that I was before all of this.’

46:43  Audience member talks about the value of acknowledging uncertainty and fear, and figuring out ways to take control of the situation:  I think kind of what I saw, as a caregiver here, is acknowledgement of an issue or a situation— say the fear, we were just in a class earlier—the fear of another cancer illness coming.  Just acknowledging, you know, ‘okay, yes, this is possible’ and you can live in that fear.  But what I saw kind of growing is the path of helping yourself get out of that fear.

So then maybe you have to eat better, and it's, it's easy to say, ‘well, I need to eat better, but then what are you going to do?’ We went to a Cancer Support Community® and took classes with other patients and learned how to cook better or exercise better. So, it's, you know, sitting with the fear and acknowledging it and thinking about what you could do to get out of that zone, I guess, is what it is and be surrounded by people that could help.

Ms. Stachelski:  Absolutely. It's all about gaining more skills and more resources so that you can tolerate, what's ahead. And I was thinking so much about this, like preparing this presentation, because I wish I could just tell you, ‘if you practice these mindfulness techniques and you think positively and you cook better, things are going to be fine’.   But the truth is that life is so hard. Right?

I know every one of you in this room knows that, and I think of it like standing on a beach and the waves are just crashing in on you and they're relentless, right? This is life, like there aren't going to be problems that keep coming and that cancer wave, I'm sure, knocked you flat, but then hopefully you gain a few resources, gain some skills in that resiliency that gets you back up and you face those waves again.  And guess what? Those waves keep coming, but hopefully that next one doesn't knock you down quite so much.

I know after my transplant, when I'd hit bumps in the roads, and that fear really comes up, that my first thought was sometimes a real resentment of ‘but wait, I did my time, I went through my hard thing and I should have smooth sailing now’. But that's just not how life works. Right? So there will be other challenges that we have to face, but it's, ‘do we have the right resources to keep facing that and, hopefully do it a little bit better next time’ so that wave doesn't totally crush you, but you're able to stand up against it.

49:16  Audience question about how to deal with the fear of taking medication that could cause another cancer:  What I wanted to ask about is how do you deal with, you know that you're taking a medication that you're being told could possibly cause another cancer after you've gone through all the stem cell process. And, and then, excuse me with me, not only did I have stem cell, but I've had several surgeries, so the doctors telling you, well, this pill can cause other cancers. So in my mind, I'm like, I don't want to take it. So how do you deal with that?

Ms. Stachelski:  Oh, that is such a good question. It's that medicine is also becoming the enemy, then.

I think chemo can be the same way, right? That you're, you're thinking ‘I'm just taking this toxic substance that's supposed to make me feel better.’  And I think also, in conjunction with those medicines there are other things that we're taking [that] can cause depression— like there are chemos that cause depression. You know, how many people have been on steroids and how bonkers those make you.  So we're taking all these things that are supposed to help us, but then sometimes the side effects ended up being worse than the initial treatment.

 I think again, it comes back to living in the present moment. Statistically they can say ‘this is how many people will go on to develop a secondary cancer’, but they can never tell you what your path will be.  And I think this is where the power of our minds— I really believe in this— that the power of our minds where they can't tell you what's going to happen to you, so then you make up your own mind that you're going to be one of the ones to do so well through this. And there’s no sense living in the fear of a recurrence because it will only take away from your present peace. So, you have the skills and resources to deal with that if it happens, but you live each day determined that it won't be, that you're going to live your very best life. And again, with those skills and resources you're able to handle what comes next.

51:42  Pediatric transplanter, Dr. Ken Cooke, responds to concerns about medications being harmful:  So my name's Ken, I'm a pediatric bone marrow transplant doctor, and I just wanted to help answer your questions about when you, we want to give you a medicine, and we're like, ‘oh, this medicine can cause all of these side effects’. I think there's a couple of things that I try to help my patients with any way to, to kind of get their arms around this.

The first is, every time you see these medicines, there are laundry lists of side effects, right? So, the first thing I do is say, ‘listen, let's sit down together and say here is what is likely, this is what is possible, and this is what is very rare but very serious’. And if it turns out that whatever medicine it is might cause, I don't know, your nose to fall off. Well maybe.  But that's really, really, really unlikely. And sometimes that helps patients and families get their arms around making these big decisions. How likely is it that you're going to experience that side effect?

And the second thing, of course, is—and you were touching upon this—it's what is at stake.  So, all of our chemotherapy agents can really give rise to other cancers, but if we're giving chemo, we know that this is a big hurdle we have to get over.  You have to get over that leukemia or that lymphoma and we are going to give you this very toxic medication, but we have to get over this bar.

So the question is what? What does that medicine treat? If that medicine is treating something relatively— nothing is here is trivial, but you know what I mean? relatively less important—then you weigh the risks and benefits. Is it a likely risk that this medicine may cause harm and the benefit is low?  Or is the benefit quite high and the risk relatively low?

So weighing those risks might provide you with a little bit more reassurance as you're hearing this, because we always have to tell our patients, these are all of the risks, right? Sometimes our patients and families say, you know, Ken, just tell me what to do, or don't tell me all of the risks, but we have to, here in the US. That's how we practice medicine, right? We want to tell everyone what the risks are and then help you make the best decisions.

So hopefully you can go back to your care providers, your physicians, your nurse practitioners, your physician assistants or nurses and say, ‘Hey, can you help me here? I need to - I'm wrestling with this. This seems like a big side effect, but what's the real likelihood that that will happen?’ And lightening has already struck a couple of times to almost all of us in the room, right? So, you could say, even if it's one in a million, how many people get cancer? Right? Maybe I'm unlucky in that regard, but I turned it around and say, listen, if you're a survivor, you are lucky you've just beaten down a big life-changing, life-altering event. So, stay positive and then weigh the risks and benefits with your healthcare providers and make those good decisions.

Ms. Stachelski:  I love that. Thank you. It goes back to being your own advocates, that you have to make sure you're getting your questions answered, that you feel cared for, that you feel comfortable with what you're doing. My overall philosophy, I think, is finding the very best doctors that you can, and that you feel personally cared for, and that they really believe in—that you're capable of overcoming this.  And then all the rest, it's up to you: keeping your body, mind and spirit and the best place for healing. And that's my wish for all of you. Just these, these tools and these resources to, to transform this experience with cancer. And I wish all of you the very best. Thank you. Thank you 

 

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