November 4, 2020 | 10:00 AM
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Published on October 16, 2020
Can Myeloproliferative Neoplasms (MPNs) Prepare You For Other Uncertainties In Life?
Listen in as Dr. Jim Healy, Counseling Psychologist and Founder/President of Rooted in Love, discusses the unique ways that MPN patients are prepared to face anxiety and fear head on — such as in the midst of the global COVID-19 pandemic. He is joined by Patient Power Co-Founder Andrew Schorr and Jean Diesch, MPN Patient Advocate, as they discuss the heightened worries that many MPN patients initially faced when the pandemic emerged, and how many of them realized that they already had excellent day-to-day strategies for managing and conquering fear.
They will cover topics including day-to-day wellness strategies, how to find community support, and the critical perspectives you should remember in uncertain times.
Transcript | Myeloproliferative Neoplasms Anxiety during COVID
So now here we are during this pandemic, there's been reports all over the map of people living with a blood condition or a blood cancer. Are we at higher risk of death even if we have one of these diagnoses? So that's been terrifying to me, and then finally came out, people with different blood cancers fell into that category. So how have you and Madonna coped with that, and what do you tell people?
I can say that if something's going to happen, go wrong, Madonna's probably going to experience it. We've given up on elective surgery because it tends to not go well. So when this happened, Madonna thought that she was going to get it and she was going to die from it. It took a while, now I know it's been said often on Patient Power is, in a sense, the cancer community is more prepared to be careful. We know how to deal with limitations and restrictions.
Once I realized that I had to be under the same restrictions as my wife, and just accepted that, if you're careful and have a plan, you don't have to worry. You separate the probable from the possible. You can be cautious, and if you're cautious and have a plan, then you don't have to worry as much. But were we scared? Yeah. Are we still scared? Yeah. No doubt about it.
We worry about, is another shoe that's going to drop? So, for instance, we worry now, if there's a vaccine for COVID, will it work for us, or will something about our blood condition prevent it from working or working well? That's just one example. So there's all this worry about stuff.
Well, somebody said anxiety is fear looking at itself and saying, "Oh, my god. I'm not going to be able to handle this. I'm going to be afraid." But we usually find that when we get to the situation, we get to the moment, we can deal. We can deal with whatever comes up. There's an old saying, the road straightens out behind you. Meaning, as you go through life, it's chaos half the time, or it feels like that, and it's only until you reflect and look back you say, "Hey, there was a path. Somehow this all made sense. The road straightened out behind us and I was up to it at the moment."
So, trust your history. Trust the fact that you're a survivor. Trust the fact that you've been through these things. When the moment comes, you'll be up to it. Because we can deal with the moment, it's the anticipation. It's the fear of looking at itself that scares us.
What are some skills you or you and Madonna use? You're counseling psychologists, so do some with us, Jim.
Everybody starts with this, but I have to too, breathing. Okay? Breathing. That's the simplest technique that reduces anxiety and you can be calmer by the end of my next sentence. Because if you breathe correctly, and I call that conscious breathing, it kicks in the relaxation response. What's breathing? It's taking in and letting go, and that's life. All of life is basically taking in and letting go. So both metaphorically, but actual realistically for your body, when you practice that consciously, to take in and let go like I just did in the middle of this, it takes care of the past and the future and brings you back to the present moment. Okay?
You take in the moment and you let go of the fear, and especially if you practice that during the day. Breathe diaphragmatic-ally from the stomach, and let go. It only takes one breath to kick in that relaxation response, and it's always available to you.
Our bodies are fixed to pay attention much more to what bothers us than to what we like. That's evolution, that's survival skills, our organism responds to the things that are troubling us. Here's an example, the metaphor I like to use is to think of a dog that runs around all day and has a great time, sees beautiful things and meets people, but what does the dog come with? Burrs. What sticks to you are the nasty things. So if we're not careful, all we remember about the last day or so is the burrs, and that's our body tells us to do that, pay attention to things that can bother us. But in order to have not a Pollyanna view of our life, but just an accurate view of our life, we have to intentionally recover all the good things that have happened to us.
So in other words, the patient takes it seriously, this communication, and that's something that she or he worries about, that tension.
One of the things that I have had with the experience of the support group if you don't mind me saying.
So we have a number of new folks that come to the group, spouses, family members, and when they come to the support group, sometimes their caregiver is a little bit like, "What am I doing here?" Standoff-ish like, "I shouldn't be here, or I don't need to be here." But what I have found is once they are engaged with other patients that are suffering with the same disease and the same illness, and how their spouse or caregiver is dealing with it, it makes a huge difference. It is so powerful to see that their caregiver understands what they're going through at this point. So that has just been one of the more powerful things that I've ever done. It's very rewarding to see that happen. Although with COVID, we're meeting by Zoom now, so it's not quite the same.
You alluded to earlier, sometimes you get tired. Fatigue is big for all of us, can be.
Well, it all goes back to our friends. I look normal, people don't realize it. Our support group has walked with Light the Night for the past seven years, and I've invited my friends and family members to walk with us. When they see me and they see some of the other patients in my group, some that are extremely sick, some that have not made it, and they see the recourse, they learn to appreciate where I am and protect me. So if anybody is sick, they're saying, "Listen, please don't come around me, I'm sick, or my family members are the same way." So they have a different appreciation of it now from before. So again, I say get involved with local organizations, local support groups, it is a way to educate your friends and your families and they become more aware.