Tara Reynolds and the Wings of Love

What are the Wings of Love? How can someone help a loved one when they’re diagnosed with a potentially life-threatening condition? Can we still enjoy life after dealing with cancer?

Tara Reynolds developed Wings of Love, a 48-card oracle deck featuring butterflies and moths, to help terminally ill patients and their families come to terms with an impending death. As a two-time cancer patient, she was struck by the lack of support materials available for end-stage patients. Before she leaves this earth, she’d like to change that.

Tara and Wings of Love are available on:

Etsy, Instagram & Facebook 
Earth Angels Oracles
#wingsoflove

Transcript

Tara Reynolds: 0:00

Just that word"fight" and "battle" that people often use with cancer. That's gearing up our fight or flight response that's being 100% on all the time. Push, push, push. Is that really good for a struggling body?

Michael Liben: 0:27

What are the"Wings of Love"? How can someone help a loved one when they're diagnosed with a potentially life threatening condition? Can we still enjoy life after dealing with cancer? Welcome to"Bereaved But Still Me". Our purpose is to empower members of our community. I'm Michael Liben, and the father of three children: Idan, Sapir, and Liel. Liel, my youngest daughter, was born with a heart defect and later developed autism and epilepsy. Losing her 15 is what has brought me here to be the host of this program. Our guest today is Tara Reynolds, Tara developed "Wings of Love", a 48 card oracle deck, featuring butterflies and moths to help terminally ill patients and their families come to terms with impending death. As a two time cancer patient, she was struck by the lack of support materials available for end-stage patients. Before she leaves this earth, she'd like to change that. In today's program, we're going to learn more about Tara, her oracle deck, and some advice from Tara and how to help others with cancer. Tara, welcome to "Bereaved But Still Me".

Tara Reynolds: 1:32

Hi, Michael, thank you so much for having me.

Michael Liben: 1:35

Let's start by learning more about your first experience with cancer. I know from our pre interview that you had breast cancer, can you tell me more about that?

Tara Reynolds: 1:44

Absolutely. I had early stage breast cancer in 2012. And it was actually caught during a routine mammogram. So I would encourage everybody that you get your mammogram on a regular basis. Fortunately, because it was caught early-stage treatment was fairly easy. I had some surgery, I had some radiation. And then I was good to go.

Michael Liben: 2:11

Tell me more about your course of treatment and how you manage to go through all of that.

Tara Reynolds: 2:16

Sure, the course of treatment was, looking back on it, it was very easy. I wonder now if God wasn't getting me ready for what was to come? I had a lumpectomy, which is a fairly easy surgery to go through. And then after that I had 32 rounds of radiation. That got a little hairier, but again, it was very manageable. And at the end of my radiation, I was actually able to join an area boating team that we're fortunate enough to have called the "Dragon Dream Team". It's made up of all breast cancer survivors. So I was able to get back in the water. And with the help of those ladies around me, I was able to surpass where I had been, as far as physical fitness goes and just really engaged in life again, which was wonderful,

Michael Liben: 3:08

Now, for a lot of people, if they've had breast cancer, that's more or less it, or is it expected that it might come back on the other side?

Tara Reynolds: 3:17

I can only speak to my case. But I will let you know that I was told that the chances of my cancer coming back were so small, that I really didn't need to worry about it. And I always thought well, if I have to deal with cancer again in my life, it would probably be the breast cancer and it would probably be coming back at stage two or three and I could probably still rise up to the occasion and overcome with treatment.

Michael Liben: 3:46

That's not exactly what happened was it?

Tara Reynolds: 3:49

That is not exactly what happened. No, we were just sailing right along our boating team, we were doing really well. We were at the point where we could compete in the world races which were going to be held in Florence, Italy. And we were really excited to do that a lot of us were taking our spouses along on the trip and that was the case for my husband and I. We were really looking forward to seeing Europe and we were all set to take off and race in Florence. About three weeks before I noticed this little pink spot by my collarbone. I really didn't think much of it except, "Oh, I'm getting ready to go out of the country in a few weeks, I better go see the doctor, just in case. I don't want to end up in a hospital in a foreign land. So I went to my doctor and my doctor was right on board with me and said, "Gosh, I don't really think this is anything, Maybe it's a small infection. We're going to put you on some antibiotics, and you should be good to go. But given your history, we're just going to send you out for some imaging". And the rest is history.

Michael Liben: 5:03

So what did they find?

Tara Reynolds: 5:05

They found stage four lung cancer, which was a-yeah, talk about something coming out of left field. I was not expecting that, in my wildest dreams. Italy did not happen. We cheered on the team from home. And I sent a few momentos for them to carry on the boat so that I would be there in spirit. But it was time for me to just jump in and start treatment for stage four lung cancer.

Michael Liben: 5:37

Where do you go from there? What happens at that moment when they say, "Oops, it's terminal"?

Tara Reynolds: 5:42

I think that had to be one of the most surreal moments of my life. I was just gobsmacked. I don't know how else to put it. I stayed gobsmacked for a short while and then I just thought, "Okay, I need to face this and handle it with as much grace and dignity as I can muster. So that's what I decided to do.

Michael Liben: 6:07

Well, I can't really imagine that moment, your world just turns around completely. You're on your way to Italy and a great time and everything's going great. You're going to have a wonderful time and compete and you're feeling good. And then...you get this.

Tara Reynolds: 6:22

Exactly. I didn't feel sick at all, I should point that out. I felt strong. I felt healthy. I wasn't in any pain at that point. And was causing me more grief than the cancer was.

Michael Liben: 6:38

Did you get the impression that I've been through this before? But it's a little different this time? Did you have any reflections on what was coming?

Tara Reynolds: 6:46

Yes, I did. Being diagnosed with early stage breast cancer feels like a giant pep rally. Everybody's rooting for you, everybody's cheering for you. You're getting swag bags, people are coming out of the woodwork. They're dropping off meals. They're doing beautiful things for you. Strangers are coming out of the woodwork. Stage four cancer is a whole different ballgame. It's one of the loneliest feelings in the world. Yeah. It's one of the loneliest feelings. There's no cheerleaders. There's no pink pom poms. There's no swag bag. There's nobody telling you, "You got this", because everybody knows what's going to happen eventually. And the part that I think we all forget, is that's going to happen to all of us eventually, anyway.

Michael Liben: 7:43

Well, I think those of us in the Heart World are aware of that. I've heard from other heart parents, everybody eventually. So it sort of gives them a strength to push through with whatever it is they have ahead.

Tara Reynolds: 7:55

Yes. Yes. So, stage four cancer felt really lonely and really strange. Instead of having people coming out of the woodwork to support me, it almost felt like people were running into the woodwork to get away from me. As if I might be contagious somehow or perhaps they didn't know quite what to say to me. I don't think we do death really well in this

Michael Liben: 8:23

I think it's that country. I think we could learn how to do death a little bit better here in the United States.

Anna Jaworski: 8:33

You're listening to "Bereaved But Still Me". If you have a question or comment that you would like addressed on our program, please send an email to Michael Liben at michael@bereavedbutstillme.com. That's michael@bereavedbutstillme.com This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. The opinions expressed in the podcast are not those of Hearts Unite the Globe, but of the hosts and guests and are intended to spark discussion about issues pertaining to congenital heart disease or bereavement.

Michael Liben: 9:11

Welcome back to"Bereaved But Still Me". We're talking with Tara Reynolds. Tara, we were talking about how you discovered you had a terminal illness. Tell us now about how that led you into art.

Tara Reynolds: 9:23

Well, it's kind of an interesting story and it's a little bit outside of the box. So I'll ask that you bear with me here.

Michael Liben: 9:31

We're all outside the box here.

Tara Reynolds: 9:33

Yeah. I've always been the type of person that likes to go and do and be active. And after about 20 months or so I could no longer tolerate the chemo pill. So we needed to look at traditional chemo infusion. That was the only option available for me. And it was not an option that I wanted. So I fought that pretty hard. And my husband and my daughter, of course, were saying, "Come on, just give it a try. Give it one try, you're in control, we can stop this at any time". I was very torn about trying that chemotherapy. And when you receive chemotherapy, just like any procedure, a nurse takes you into a small room, and explains what's going to happen. In this case, there's a giant notebook. And you basically spend the entire time going over side effects, and all the things that can go wrong during chemo. And as that was happening, I was hearing a small voice in my head, just saying "no". And it got louder and stronger, and I began to wonder if I was having a panic attack. Or if I was having some kind of a brain tumor, or some weird thing was happening. And it continued the whole way home as I drove home in the car was just, "No, no". And I cancelled out of chemo twice, before I went ahead and went through it. And I actually found out later, when I consulted a medium, that that was my father. And my father was a physician in his life here on earth, and that he has been guiding me to choose the treatment options that will be most comfortable, and keep me here the longest with my family. And that was a really special moment. And even though I felt like maybe I didn't have a whole lot of other people on my side, my dad was there. He was on my shoulder, he was whispering in my ear. And it just moved me to tears. And it helped me to stand strong in my decision.

Michael Liben: 12:09

You know, I totally feel that my father has been on my shoulder since he left, your father has been giving you medical advice. My father has been telling me bad jokes. But it's it is very comforting. It's some sort of affirmation also that you're doing the right thing. Or, at least for you, yourself, you're doing the right thing, I would never tell anybody to do chemo or not to chemo. That's a decision for the patients to make.

Tara Reynolds: 12:31

Correct. It's a very personal decision. And I also would like to reiterate that, while it was the right decision, for me, it's a personal decision. It's one that needs to discuss with their doctor, their family. And most of all, they just need to spend some time in reflection, and decide if it's going to be the right thing for them. So I decided to try one infusion. And it was pretty much of a nightmare. I felt very strongly that I would not survive chemo, that I would have a better chance to forego chemo and sign up for hospice. My faith also began to grow. I was paired with a really wonderful hospice chaplain. And I'm just going to digress here for one minute and put this out there. If you're dealing with the terminal illness, please call hospice sooner rather than later. Because the sooner you begin to work with them, the actual longer life expectancyyou might have.

Michael Liben: 13:40

Do you have an idea why that might be?

Tara Reynolds: 13:43

I think because hospice care is patient centered, everything is about keeping you comfortable, and your well being. Chemotherapy is not that. And I think that goes a long way toward just longevity, just being at peace being comfortable. And a lot of times my hospice nurses tell me that people end up living longer on hospice than they thought they would. People that come to hospice very late, when they're already actively dying, those are the people that pass very quickly because they've waited so long.

Michael Liben: 14:28

I want to be clear, you're doing hospice at home.

Tara Reynolds: 14:30

Yes. I have a fantastic team that comes in and visits me at home and takes care of me.

Michael Liben: 14:37

Now, let's talk about the art.

Tara Reynolds: 14:39

Yeah, going back to the art. So my faith was growing, and for some reason, I don't know why, I always seemed to talk to God when I'm in the car. So I'm driving along, I'm talking to God, I'm just saying,"God, I haven't died before. I don't know how to do this and I'm going to need some help getting through this process". What God did was send me that hospice team to help me. But the next thing God did was tell me to paint. I've been a graphic artist my entire life, but I've never been a fine artist. And I've always wanted to play with paint. And I said to God, "I don't know how I'm gonna get through this, I'm gonna go insane if I'm just sitting around watching TV all day, waiting to die". And God said,"No, you'll paint, and you'll write, like you've always done". And I thought, "Okay". And within the next day or two, I was on YouTube, and an artist video popped up. And it was this really calm woman and she was offering watercolor lessons through her YouTube channel for a very fair price. And I thought about what God told me and I said, "Well, okay, I can swing this, I'm going to sign up for this class". And that's how I began to paint. The words came a little bit later.

Michael Liben: 16:09

Well, how was it that you came up with "Wings of Love"?

Tara Reynolds: 16:13

That same artist put out a video one day, talking about finding your worth as an artist, she had artists affirmations that she shared. And she was reading these artists affirmations, and showing different pictures of her work. And I just thought to myself, "Wow, if there was something like this for terminal cancer patients, that would be incredible". So I wrote a few affirmations of my own. And I took it to my local cancer center. And I just said, "Hey, what do you guys think of this?" And I showed it to my hospice team, and asked them the same question. And everybody said,"Yes, we think there is a need for this. We think this can work. Keep going". So that's what I did.

Michael Liben: 17:10

Tell me a little bit more about "Wings of Love" and how people can get them, how are they distributed?

Tara Reynolds: 17:16

The "Wings of Love" oracle deck is available through our Etsy store. And we are also on Instagram, and Facebook, as "Wings of Love".

Michael Liben: 17:27

So I can buy one and how does the other one get donated? Do I tell you who to give it to?

Tara Reynolds: 17:34

Unfortunately, no. We start a list of people who want them. So hospice organizations, cancer centers, who would like to have them, and we just go down the list and fill the orders 10 decks at a time.

Michael Liben: 17:53

If you've enjoyed listening to this program, please visit our website heartsunitetheglobe.org and make a contribution. This program is a presentation of Hearts Unite the Globe and is part of the HUG Podcast Network. Hearts Unite the Globe is a nonprofit organization devoted to providing resources to the congenital heart defect community to educate, empower, and enrich the lives of our community members. If you would like access to free resources pertaining to the CHD community, please visit our website at congenitalheartdefects.com. For information about CHD, hospitals that treat CHD survivors, summer camps for CHD families, and much, much more. Tara, let's talk about how to prepare for the end of life. It seems that your oracle deck is more than just a bunch of affirmations, tell us about some of the special activities that you came up within this deck?

Tara Reynolds: 18:46

Sure. So as I mentioned before, some of them are logistic things such as, get your papers in order those we might not think of on her own. And then there's different activities. There are songs to listen to, there are books that you can read. There are activities such as drawing what you think heaven might look like, or making a soundtrack with your family, so that you can remember all the good times and they can have that soundtrack when you leave Earth and they can remember the good times all over again. Those are some of the examples of things that are in the deck.

Michael Liben: 19:28

I love that because it's not the sort of thing that you might think of, it's actual hard advice for people, besides get your papers in order, which is very important. And it's part of it. I like the idea that it has many activities for things that you can do for your family for after so that they will remember you and carry you with them. And that's one of the important points that this program has always been on about. So I really am totally in line with this and I love it.

Tara Reynolds: 19:53

Thank you so much. I appreciate that.

Michael Liben: 19:57

What advice would you give to others who have received the terminal diagnosis?

Tara Reynolds: 20:01

The first thing that I would say is to just give yourself a little time to let it sink in. It's a lot it really is. And the second thing I would say is, don't get ahead of yourself. Yes, it's important to think ahead in terms of, like we mentioned, get those papers in order and so forth. But don't lose sight of the present day. I start every day just saying,"Okay, God, what did you bring me today? What's on our agenda today?" And I try to just take it day by day. And day by day has gotten me 20 more months than my oncologist said I would have. I think it's a pretty good plan. So although it's very simple -

Michael Liben: 20:59

Just for comparison, on chemo, how much time did they give you? If you had done chemo?

Tara Reynolds: 21:05

Two to six months.

Michael Liben: 21:06

And we're here now 20 months later.

Tara Reynolds: 21:08

Yeah, we're here 20 months later.

Michael Liben: 21:11

We don't give medical advice. And we're not going to tell people here,"Don't do chemo". That's not the point. I think the point is, though, that there are decisions that people have to make, that involve themselves and basically themselves alone. It's a difficult decision. So I wanted to ask you a little bit about hospice.

Tara Reynolds: 21:28

Sure.

Michael Liben: 21:28

I think I've evolved on hospice, I was a little concerned that if you are in hospice, maybe you're not doing everything you could be doing. And there are people who I think would think that, if I'm not doing chemo, then I'm hurting myself by not doing it. So tell me a little bit about what that's involved. Because I see these, again, I'm not a doctor, and I don't play one on TV. But I've seen these ads for all these miracle medications for cancer. And then half of the commercial is all the things that could go wrong, including it could make your cancer worse, and you could die.

Tara Reynolds: 22:03

Yeah, well, my family and I, we have a little game that we play where we make up side effects to those commercials.

Michael Liben: 22:11

Right, your ears will bleed. It's

Tara Reynolds: 22:14

Uncontrollable snot rockets. Yeah.

Michael Liben: 22:17

We're laughing and I'm sure somebody thinks that's inappropriate and I apologize.

Tara Reynolds: 22:21

But you gotta laugh.

Michael Liben: 22:23

That's my line. Yeah, you took it. But seriously, for people considering hospice, it's one of those things that I'll give an example. It's not exactly the same thing. When my daughter was dying, we had different options. We could leave her on the machines, for who knows how long, we could take off all the machines, but the breathing machines and so that she would crash. Or we could disconnect her now with some sort of dignity and let that happen. And my children wanted us to go all the way and let her crash because that way, there's, they could say there was nothing we didn't try.

Tara Reynolds: 22:57

Okay.

Michael Liben: 22:58

And that's one aspect of it. But if we had done that, we would not have been able to donate any organs. And so we had to take that leap and say, once she's brain dead, she's really gone and breathing or not breathing. She's gone. That's a decision we had to make. And I think you have to make the similar decision in hospice, your diagnosis is terminal.

Tara Reynolds: 23:17

Yes

Michael Liben: 23:18

I can't be more blunt than that you are going to die from this. So it's not a question of, "can I stop it from happening?" It's "can I stave it off a little bit in a way that that may be terribly painful, and hurtful to me and my family?" I think people don't necessarily think that through until they're in that position. You're there. I'm not. Am I right?

Tara Reynolds: 23:37

Yes, yes. Absolutely. I am a big proponent of starting hospice, before you think you need to start hospice,. Hospice nurses, social workers, chaplains, physicians, are miracle workers. They are. I call them my earth angels. They are so different from the type of staff that I encountered, dealing with oncology. And that's not to say that oncology staff isn't effective and isn't caring. They are. But when you're dealing with chemotherapy, there is an attitude of, you've got to fight through this. You've got to push through this. And if you think about just that word, "fight", and "battle" that people often use with cancer, that's gearing up our fight or flight response that's being 100% on all the time, push, push, push. Is that really good for a struggling body to be in that state? I don't think it is. It wasn't for me. Hospice allowed me to come at this the way that I wanted to. I was in control, I could start my pain medicine when I wanted to, I could talk to a chaplain, when I wanted to, if I didn't want to do something, we wouldn't do it, no problem at all. Feeling like I had this team that was 100% behind me, I can't tell you what that did for my spirit. It was really a beautiful thing.

Michael Liben: 25:34

I think it's important. I think in the end, once it's decided that we're going once that's a given, and we can't really change that, thow we go has a lot to do with us personally, but also with our families, and how we will be remembered and the pressure on our families at the critical moments. So I respect that. I respect that. And as I've said, I've evolved a lot on that. Regarding hospice, it always seemed to me like, "Don't you want to do more?" And as we've said, sometimes the answer is no. And that concludes this episode of "Bereaved But Still Me". I want to thank Tara Reynolds for sharing her story, her bravery and the "Wings of Love" cards. Please join us at the beginning of the month for a brand new podcast. I'll talk with you soon but until then, please remember, moving forward is not moving away.

Anna Jaworski: 26:30

Thank you for joining us, we help you have felt supported in your grief journey. "Bereaved But Still Me" is a monthly podcast and a new episode is released on the first Thursday of each month. You can hear our podcast anywhere you normally listen to podcasts at any time. Join us again next month for a brand new episode of"Bereaved But Still Me".