calm woman with dark hair

(31) The Unimaginable with Mary

Listen above or on iTunesStitcher, Google PlaySpotify, and YouTube.

Learn from the bravery and heard-earned wisdom of my guest and close friend, Mary, as she tells us all about how she handled the unimaginable – a cancer diagnosis for her son. Full disclosure, there are a few breakdown moments in here, but also, we laugh so much, my god, especially at the beginning and then at the end when she reminds me of one of the funniest moments we had together. We also talk about that one time she betrayed me, how her son’s diagnosis completely changed the way I parent, and a Britney Spears moment we shared when we both lived in Santa Monica. Mary also talks about how her son’s health emergency affected her marriage, which part of her life she had to completely put on hold, and her advice for any parent going through a medical crisis – and their friends who want to help but don’t know what to say or do. Mary was a self-proclaimed crunchy mom before her son got sick, and she gets real about how she had to lose her crispiness in order to save her son. I know you are going to love her as much as I do.

Right-click and “save as” to download this episode to your computer.

EPISODE TRANSCRIPT:

Brandy: Hey guys, it’s me Brandy with just a quick note before the episode starts. I had this one locked and loaded before the pandemic happened, and I just want to mention that number one: spoiler alert, but no one dies in this episode. I don’t know that our nervous systems could handle it otherwise. And number two: the things my guest talks about today are actually quite fitting for the moment. She talks about going through the “unimaginable” which is similar to where we’re at now, so some of her insights about how the unimaginable changed her habits, her marriage, her outlook, the way she advocates for herself and kids, are things we can suddenly all relate to in a new way. Okay, now back to your regularly scheduled, pre-pandemic episode…

Brandy:                   Hi, Adult Conversation Podcast listeners. See that? I changed up my intro line by one word. I’m creative. In today’s episode, you will learn from the bravery and hard-earned wisdom of my guest, who also happens to be one of my closest friends — like, we were at each other’s births kind of friends. Mary tells us all about how she handled the unimaginable: a cancer diagnosis for her son. Full disclosure, there are a few breakdown moments in here, but we laughed so much. Especially, at the beginning and, then, at the end, when she reminds me of one of the funniest moments that we had together that I had completely forgotten about. We also talk about that one time that she betrayed me, how her son’s diagnosis completely changed the way I parent, and a Britney Spears moment that we shared when we both lived in Santa Monica. Mary also talks about how her son’s health emergency affected her marriage, which part of her life she had to completely put on hold, and her advice for any parent going through a medical crisis – and their friends who want to help but don’t know what to say or do. Mary was a self-proclaimed “crunchy mom” before her son got sick, and she gets real about how she had to lose her “crispiness” in order to save her son. I know you are going to love her as much as I do.

Brandy:                   Friendly reminder, my book, Adult Conversation: A Novel, is available for pre-order. It’s a darkly comedic novel about the relentlessness of modern motherhood. Find it on Amazon, Barnes & Noble, IndieBound, and in stores starting May 5th. For more info on that and upcoming Summer book signing events in Las Vegas, Denver, and Los Angeles in Orange County, California, check out my website at http://www.adultconversation.com. On to the show —

Brandy:                   Today on the podcast, we have one of my best friends, Mary. I don’t even know how to lead you in on this because we have so much. One of the things that I want to tell people about you is that we’ve been there for each other — oh, my God, I’m going to get emotional – we’re not even fifteen seconds in!

Mary:                       {laughter}

Brandy:                   We have been there for each other through some of our most vulnerable moments. I was at two of your births, and you were at one of my births. We didn’t come here to talk about births today, although, we could have a whole other podcast on that.

Mary:                       We could.

Brandy:                   We came to talk about your son and a health crisis that you guys went through when he got cancer. One of the things that I have to say is being at your second birth — so your first son is named Luc, and he’s the one who had cancer — being at the birth of your second child, I remember…{laughter}. We just laugh at the weirdest shit together. I remember this moment when you were about to give birth, the baby was crowning, and everything was happening. I was holding Luc who was around three at the time.

Mary:                       And not fully clothed…

Brandy:                   Yeah, he probably had a bare ass. {laughter} I remember holding him and watching this whole miraculous scene happen, and he was eating a piece of chocolate. Your baby was coming out, and I was like, “Luc, it’s your brother! He’s here!” He just looks at me, and he goes, “Can I have more chocolate?” {laughter}

Mary:                       {laughter}

Brandy:                   Kids are savage. That moment, to me, just summed up how (developmentally appropriate) self-centered kids are.

Mary:                       Yeah.

Brandy:                   I love that moment for so many reasons. He was like, “Yeah, my mom’s pushing out a baby. Do you have any more sugar?” {laughter}

Mary:                       I think he asked me if he could have my chocolate, too, in that moment. Do you remember that?

Brandy:                   No.

Mary:                       I feel like he asked me, “Can I have your chocolate?” Or I heard him say that.

Brandy:                   If that isn’t motherhood in a nutshell — I’m pushing out a fucking other human, and you’re asking me for something. {laughter}

Mary:                       …for my chocolate, by the way!

Brandy:                   Yeah. {laughter}

Mary:                       That was for me. {laughter}

Brandy:                   I have to ask you this, and I know you’re nervous to answer this question: What do you think the listeners need to know about you?

Mary:                       Well, I guess, probably that I had all of those home births. (Since you brought it up) {laughter} I had three home births, and I also miscarried at home. That was pretty brutal — more brutal than having a baby at the end. That’s pretty intense.

Brandy:                   Yeah. An interesting piece about your home births is that I had never been to a birth before. We met, and then you asked me if I would be labor support at your birth. I wasn’t even a doula yet, so you are the one that got me into this realm. One of the funny parts of it is that I got pregnant six-months to a year later, and I was totally going to give birth at a hospital. In fact, I was romanticizing about it for the stupidest fucking reason: the Cabbage Patch Kid Hospital —

Mary:                       Right, the tags?

Brandy:                   Yes! The tags and BabyLand General — is that the name? I had this whole idea that when you give birth at a hospital, you get the name tag on your baby’s arm, and you have the blankets — there was this whole Americanized version that I had in my head. I thought it was great that you did the home birth, and being there really opened my eyes to, “This can happen, and everybody doesn’t die? That’s amazing!” You were so strong, and it was really beautiful. Then when I got pregnant, I was like, “Oh, yeah, that was great, but I’m going to do a hospital birth.” Then I started asking some of the questions about choices I could have during labor, and I started to realize that there aren’t as many choices and there isn’t as much freedom when you’re in the hospital. I decided I was going to do a birth center, and then I ended up having a home birth.

Mary:                       That’s right.

Brandy:                   But I remember this moment (and I tell everybody in my child birth classes about this) where I looked at myself in the mirror during transition because it was fucking hard.

Mary:                       I remember. I was there.

Brandy:                   I looked at myself in the mirror, and I thought in my head, “Brandy, when did you become this tree-hugging hippy? You used to eat Slim Jims! Where did we go wrong?!”

Mary:                       {laughter}

Brandy:                   I was just mad at myself and thinking, “Why am I not with an epidural? This is terrible.” Then I got into the birthing tub, and I remember looking at you. You were, like, very angelic and strong and there for me. I remember looking up at you and thinking inside, (I don’t think I actually said it), “Fuck you. You have betrayed me and lied to me. This is bullshit.”

Mary:                       This is so hard. {laughter}

Brandy:                   Yeah! After that, I remember the midwife saying, “How was your experience? Would you do that again?” I was like, “I am never doing this again, much less at home. Never!” But as time passed, it softened, and there were some really beautiful things about it that I loved. I felt so strong having done that. Then my second child was a cesarean with a whole bunch of complications and things. I’ll probably be doing a podcast on that whole thing. I just felt like people needed to know that moment where I felt very betrayed by you but also deeply supported by you. I wanted to add that what people need to know about you is the beauty that is Mary —

Mary:                       Oh, my gosh, where are we going with this? {laughter}

Brandy:                   The beauty that is Mary, you are one of the crunchiest, most enlightened, most compassionate, sweetest people that I have ever met, yet you love smut magazines.

Mary:                       {laughter} Yes! Lady gossip.

Brandy:                   Remember when you were in labor with Luc, we were reading People Magazine and that’s when we knew things were picking up because you could no longer ingest the smut?

Mary:                       Couldn’t take it! {laughter}

Brandy:                   This is what I love about you because you’re both things. You are grounded, and you are both things. I just love that balance about you.

Mary:                       Thanks.

Brandy:                   Yeah. I feel like people needed to know that.

Mary:                       That’s an honor. I would never have confessed that I love gossip magazines. We drove by that hospital to see Britney Spears, remember?

Brandy:                   {gasps}

Mary:                       {laughter} I shouldn’t have said that?

Brandy:                   No, please say it.

Mary:                       Remember? We drove around — I think it was St. Johns because we lived up there —

Brandy:                   It was UCLA Santa Monica.

Mary:                       Yes.

Brandy:                   Britney Spears gave birth there, and we both lived in Santa Monica. We drove by. Remember, even back in the day, I was like a fighter for justice. Didn’t I yell out the window?

Mary:                       Yes!

Brandy:                   I did. I couldn’t remember if it was in my head, or if I did. “Leave her alone.”

Mary:                       Yes! You did!

Brandy:                   We were all, like, birthing advocates like, “This is a woman’s space! It’s private!” We were yelling at the paparazzi.

Mary:                       And we were just circling and trying to see. {laughter}

Brandy:                   We were both things. We were, in one moment trying to advocate for her privacy, and also completely exploiting it for ourselves.

Mary:                       Totally. That’s terrible. {laughter}

Brandy:                   Sorry Britney.

Mary:                       Big fans. {laughter}

Brandy:                   I also almost did that when Michael Jackson died.

Mary:                       {gasps} I can’t believe you didn’t.

Brandy:                   I know. I think the only reason that I didn’t is because I had heard the traffic was crazy, but we were close to that hospital. I almost put my son in the car like, “I just have to be near his being.”

Mary:                       I don’t blame you.

Brandy:                   But now it’s all controversial. Now I’m not allowed to love him anymore. And I understand.

Mary:                       I still don’t blame you. I understand, too.

Brandy:                   Thank you. Obviously, we could talk about a variety of topics here today — for days, really. We have been sounding boards and confidants to each other for years, but today we’re here to talk about this life changing experience that you went through. It’s basically every parent’s worst nightmare.

Mary:                       That’s true.

Brandy:                   I’m sure the listeners are like, “Oh, shit. I don’t want to listen to this. This is going to scare me.”

Mary:                       {laughter}

Brandy:                   I have to believe, and I know from your experience that there were — I don’t want to diminish it by saying, “There were gifts of your hardship” — but there are things that you learned that I think other people could benefit from. If people out there are like, “Oh, man, this might be heavy.” Yeah, it might be heavy, but, obviously, you can tell we have great senses of humor. We laugh a lot. {laughter} Will you tell us your story?

Mary:                       Where do you want to start?

Brandy:                   Let’s start with balls. {laughter}

Mary:                       When he was born? When we noticed how big baby balls are? {laughter}

Brandy:                   Oh, my God, baby boy balls —

Mary:                       Huge. Three times.

Brandy:                   When the thing happened at school to his balls.

Mary:                       Luc was in fourth grade, and he was punched in the balls by a fellow classmate. That started our journey to advocate more for the topic of, “Hey, we don’t touch each other like this.” We need to be more disciplined, and we can’t let kids do this to each other. Even though I know that boys might do things like that. What happened is that Luc’s balls got really swollen (sorry kids). {laughter} His scrotum got really swollen, and we just thought, “Okay, it’s swelling. It’ll go down.” We went to the doctor, and they thought that maybe he was losing a testicle. We went to the ER, and they thought he just had — I can’t remember the word for it — but, basically, swelling that was going to just go through the lymph nodes, release itself, and be fine. They gave us a lot of Tylenol. Then he started missing school more, and he was having a hard time walking. We couldn’t really understand what was going on. We were trying all of these natural remedies and all this stuff. We were calling the doctor and they said, “He just needs more Tylenol or Codeine.” They gave us a prescription for that, and we felt really bad about giving him Tylenol and all this stuff. I felt horrible about it, but he was in pain. How could we — we couldn’t say “no?”

Brandy:                   Right.

Mary:                       We were giving this to him, and it wasn’t working. I’ll never forget that he woke up one morning, and his back was swollen. This might sound totally nuts, but I had a vision of my Dad, who is deceased, in my face. He was giving me a look of frustration. I knew something was really wrong. I told my husband, “You have to take Luc to the ER right now. Something’s wrong.” They went to the ER. Later that night — they were in the ER for a long time — he called me and said, “They’re admitting us to oncology.”

Brandy:                   Oh, I get the chills just thinking–

Mary.                       Me, too. {clear throat} I asked my neighbor to come stay with my two other, younger kids. One was three, and one was seven. My neighbor came up and stayed with my kids, and I went to the hospital. Jeff came home, and that was our first night. Luc was in so much pain. I’ll never forget — you think that your kid is faking it or something, but they’re writhing in pain. You think, “How can it be that bad?” Then you feel horrible. I’ve talked to other parents, whose kids are in the hospital, and they think, “Oh, he’s not really in pain.” But they are, and they have to get all of this medication, take Morphine, and things like that just to control the pain.

Brandy:                   When you heard the word “oncology,” did you believe, “This is cancer, or this could be cancer.” Or did you think, “They probably have it wrong. That’s so extreme?”

Mary:                       I think I was just in shock. When I went to the hospital, I was just in shock. My dad had just died five months earlier from cancer, so I had spent all of this time in the hospital with him, so I, unfortunately, had a lot of experience and knowledge about all of that. He also had had non-Hodgkin’s lymphoma. It was really familiar, and that’s really uncomfortable. I think I was just in shock, and I got there to just have no idea what to expect. It’s my baby, which is totally different than watching my Dad pass because he was an adult. But this is my baby that I’m responsible for. In the hospital, your responsibility ends, and they’re taking care of your child.

Brandy:                   Right. {sighs}

Mary:                       Just getting there with him in so much pain and dealing with things like giving him Morphine. They were going to do a spinal tap. They’ve got to figure out what kind of cancer he has and what’s wrong. They needed to start steroids right away. He had lymph nodes that were so swollen in his abdomen that they were blocking blood flow.

Brandy:                   Wow.

Mary:                       He had a collapsed lung. Who knew?

Brandy:                   Shit, dude. That’s so gnarly.

Mary:                       Just dealing with knowing that I’ve got to understand what’s happening, befriend these nurses because they’re going to take care of us — I had to be all of it — understand, get the information, deal with the shock, and be friendly to the nurses. I’ll be honest, like, fifty people come in your room every day, and when the psychologist came in, I thought, “Oh, my God, I have to be, like, normal because what are they going to write down about me?” I was terrified thinking, “Are they going to judge me, and how are they going to?”

Brandy:                   Right. Does this woman need further counseling, or is she fit?

Mary:                       Yeah!

Brandy:                   Oh, God, that’s so heavy.

Mary:                       It was terrifying.

Brandy:                   How did you cope with all of that? Was it that you had to do it, and so you did it?

Mary:                       Mm-hmm, I think so.

Brandy:                   Was there something else? Were you consciously like, “Okay, I’m going to breathe through this.” Did you use any of the techniques that you use in life to regulate emotions or clear away energy or any of that kind of stuff?

Mary:                       I’m sure I totally, unconsciously, was just deep breathing. I was just in shock. You have to just keep going because there’s so much adrenaline because you can’t stop. There is no stopping. Having to go into meetings to learn what kind of cancer they think you have, and how they’re going to treat it — here’s what you can choose: you can be on a study, or you can use the standard of care of chemo. If you choose the study, there’s an oral medication. There are two different oral medications, and you don’t get to choose which one because you’d be in this study to try to see if these oral drugs or chemo will make a difference as it’s added to the standard of care. One of them had decent side effects. The other one had a side effect of death. I said, “No, we cannot do that study because we can’t choose.”

Brandy:                   Oh, my gosh. That’s, like, just playing a lab experiment with your kid.

Mary:                       Yes, on your kids.

Brandy:                   {sighs}

Mary:                       That happens. That’s not the first time that they asked us to be in a study. We said “no” to that, but just having to think about that while you’re terrified, making decisions for your child’s healthcare, and having no idea what’s going to happen —

Brandy:                   When the doctors gave you suggestions and advice, was it like, “These are your choices,” or was it like, “Here’s what you should do?”

Mary:                       No, they said, “Here are your choices. Think about it.” My little sister is a doctor, so she was on a conference call while we were all together. She could be there and give me advice, thank goodness. If you’re ever in a crisis, if you have a family member who’s in medical, you are so lucky because they know what to ask. She was so helpful. They gave us a couple of minutes to think. We didn’t really have to think. We just said, “Absolutely, not.” But our oncologist said that, in France, they do standard of care plus this one oral chemo that had the more decent side effects. He wanted us to do that, so he gave us that option of, “I will call the drug company and see if they will fund this for you.” We said, “Okay, we will try that.” That’s what we did, and he was really in favor of that. I trusted him. He was an expert in lymphoma.

Brandy:                   This was a different option that wasn’t a study? It was something that had already
been —

Mary:                       It was something that he just offered to us because he thought that it was going to give our son the best chance by also using this particular oral chemo on top of the standard of care.

Brandy:                   Wow. I thought I remembered that there was a time when you guys were out — I feel like it was the first night that it happened, or maybe the second night, that we were messaging or something — they had brought up chemo, and you guys were like, “We’re not going to do chemo.” Then something changed. Am I remembering that right or not?

Mary:                       We knew that we would have to do that. That’s not something that we would ever want to do because we are totally crunchy, like you said. That’s not something that we would ever want to do, and I’d watched my Dad have it, off and on, for twenty years with his own battle. I had seen really horrible side effects for my Dad, so, of course, I was so scared. You don’t want that to happen to your kid, and you are the one taking care of them when you leave the hospital. But there’s no way that you cannot do chemo. If you walk into a hospital and your child has cancer, you can’t leave the hospital. That’s a non-negotiable thing.

Brandy:                   What was the process like for you of letting go the way that you live your life and the foods you eat? Everything is organic, and there was a time where you were raw vegan. You’re really thoughtful about what you put into your body. In that moment, was it just, “We don’t have a choice. This is life or death?” Or did you have to have a moment of conflict or struggle, internally?

Mary:                       I did feel like (and this was going through my head the whole time), “Chemo can save lives, and chemo can kill. Chemo saves and kills.” That just kept going through my mind, but I wanted to add in extra things. They kept saying, during that meeting that we had where they gave us the options, “We’re open. We’re really open to other modalities” because they knew that’s how we were. I said, “Great.”

Brandy:                   That’s awesome!

Mary:                       That must’ve meant something. When I brought in astragalus and other things that have shown to be help during that process, they said “No. We don’t want him taking vitamins. We don’t want you giving him anything because we have no idea if it will affect chemo. We have no idea. There are no studies. They never study that.” I was so devastated like, “Oh, my God, I can’t do anything to help my child while we’re in this process.” When you go on chemo, there are so many things — four to five chemo drugs during a visit (over five or six days) plus added things like Bactrim. All of these things that could prevent getting an infection, like pneumonia, could prevent nausea, so there are a lot of medications on top of the chemo.

Brandy:                   You just felt like there was this whole tool set that you weren’t allowed to use?

Mary:                       Right.

Brandy:                   Who knows? Maybe that’s rightfully so because of the possible interactions.  I’m not saying that that was on the doctors, or that they shouldn’t have taken that stance. Just personally, for you, to not be able to do anything to help boost his immune system or help him detox or any of those things, had to feel really hard.

Mary:                       Yeah. That’s like getting the rug pulled out from under you. It finally sunk in, at some point, “I’m giving my control and responsibility to them for that time that my son is in the hospital.” That was so hard. I think that was one of the hardest things besides watching him suffer with the side effects. He ended up doing really well. At some point, I think towards the end of his — he had six rounds, so I think it was after the fourth that he started to do better.

Brandy:                   How long was he in the hospital?

Mary:                       At the beginning, almost three weeks.

Brandy:                   Then he came home, and it was the oral chemo that you had to do?

Mary:                       Mm-hmm.

Brandy:                   I forget, what was your hospital/home life like?

Mary:                       After the three weeks, he was out of pain and the swelling was down enough that he was walking. He was not able to walk when we went in. We had to go through physical therapy to make sure he could walk before we could go home. The other thing is that we had to make sure that his body was strong enough to withstand more chemotherapy because we’d go in for a week at a time to receive chemotherapy and stay in the hospital.

Brandy:                   That’s right. That’s what I’m remembering.

Mary:                       He also had a couple of blood transfusions. Those take four hours. We’d have to go in sometimes for that. If, all of a sudden, he looked terrible, was lethargic, or his face was white — we just had to monitor all of his blood work, too. It was so many things, and all of our focus was completely on him.  Before we left the hospital the first time, we had to have another meeting with a nurse. She, basically, told us that we had to change our entire life to take care of him because there were so many things that he couldn’t do. He couldn’t go to the park. He couldn’t do monkey bars. They put a port in his chest, so we had to be really careful about that — no rough play or horse play with the siblings.

Brandy:                   Oh, my gosh, they were like, “What?! We’re used to pounding on each other.”

Mary:                       Exactly! I thought, as she’s telling me this, “How am I supposed to live? How are my kids supposed to interact with each other if they can’t monkey around?”

Brandy:                   They know no other way! {laughter}

Mary:                       Then she told us, too, that we would have to wash our clothes every night. Just think, as a mom, you have all of these kids. Your husband goes to work, and his clothes have to be cleaned. You go to the hospital, school, or store, and you have to come home and wash your clothes — everybody’s clothes. I’m still in that cycle of washing clothes every night. It hasn’t left. It got so engrained. In order to keep the house germ-free, I had to use all of these wipes. I took wipes from the hospital. I’ll be honest, they have heavy-duty, kill everything wipes, so I just took the tub home.

Brandy:                   You still do laundry every night now?

Mary:                       Oh, yes.

Brandy:                   Wow!

Mary:                       I know.

Brandy:                   Those things that linger with us from something like that.

Mary:                       Yeah. I don’t know that that was worse than hearing that your child has cancer, but when they make it so obvious of how much you have to change your life to make your home safe for your child —

Brandy:                   How did you even handle the fear of your other kids going to school and bringing home germs? We all know kids in school, especially the three-year-old — well he wasn’t really in school at that time.

Mary:                       He wasn’t in school.

Brandy:                   That was probably a saving grace for that (had he been in preschool or kindergarten). We know how many colds happen, and this was in winter. Wasn’t he diagnosed in November?

Mary:                       Mm-hmm. Yeah.

Brandy:                   How did you not freak out about that, or did you?

Mary:                       I did. I’m sure that’s part of why I was so stressed about making sure that the laundry got done and that I wiped every surface down. It was really stressful.

Brandy:                   After he went through the treatments, what happened? When did you know things were getting better, and how is he doing now? What was that process like coming out of it?

Mary:                       I remember that he had come home for the first time. I can’t remember if his hair fell out his second round or his third round, but I remember it was still there. We thought, “Oh, my God, maybe he won’t lose his hair.” It’s so naïve because, of course, he did, like, a week later.

Brandy:                   How did he handle that? Was that really hard for him at that age? Did he care?

Mary:                       He was really scared of how it would happen and what he would look like. Our school community was amazing during that time, and they held a head shaving party at school. {laughter} We facetimed during the head shaving party. They had it after school, and a bunch of kids lined up. A lovely mom at school shaved people’s heads including her daughter’s. Her daughter lined up to get her head shaved. I think that was super helpful.

Brandy:                   Awesome.

Mary:                       We shaved Luc’s head right after that. That helped so much. {sighs} I’m getting emotional. He wore hats, and people made hats. It was not a big deal once we got it done, but it was before. “What’s he going to look like? This is going to make him look so sick. We’re going to go to the store, and are people going to stare?” We just did it. You have no choice.

Brandy:                   It’s the visual representation of what you’re dealing with.

Mary:                       Yes. My kid is sick.

Brandy:                   Right.

Mary:                       It’s so weird because you go through something so traumatic and it’s such a big deal. You have the physical representation — I looked like hell. I would go to the store, I remember walking in, and this guy’s like, “Are you ok?” I think I was ordering a pizza. I said, “No, my son’s in the hospital.” He started crying, and I started crying. To go through something like that, and now he’s totally fine! Now you would never know if you saw him. His hair is so thick and gorgeous. It grew in, like, this amazing color. We just went through something so rough, and now we’re on the other side.

Brandy:                   I have so many questions for you about that.

Mary:                       Go ahead. {laughter} You know about that, too.

Brandy:                   I do know about that. First of all, your experience changed my way of thinking about things because you guys were the most non-toxic family, did everything “right” in terms of keeping your body safe and healthy, and, even mentally, the way that you parent so compassionately — it was like you did all the things right, and then your son gets fucking cancer. {emotional} Your son gets cancer, and it really opened my eyes up and let me off of a hook of “getting it right” because it’s fucking bullshit.

Mary:                       Totally.

Brandy:                   There’s all of these things, as you get older, that validate for you that life isn’t fair. This for me (parenting wise) was a big one. Maybe I don’t stress about the Cheetos that my kids are eating every once in a while. Maybe I don’t freak out about video games every once in a while. I don’t know, and maybe that’s a leap. I’m wondering, for you, did that let you off any kind of hook for parenting? Did you change how you parented after that? Because there was no formula like, “A plus B is supposed to equal C, but then no it doesn’t.”

Mary:                       Yeah. I know. I’m totally emotional right now. It’s totally true. I felt like you can do everything right, and you can still get a really fucked up diagnosis or disease or whatever — a life or death situation that you have to handle. So, no. He wants to eat Cheetos because he’s a teenager. He wants to go down to the gas station and buy all of this crap and drink pop.

Brandy:                   Soda — wherever your location is. {laughter}

Mary:                       Midwest. {laughter} I had to let everything go. I had to let so much go. I had to let go of all of that control, which is the worst, for any parent, to let go of control. I had to let go of that. Although, during the hospital, we still gave him bone broth, we brought in green juice, and we did all of these things including smoothies and breast milk (he didn’t know that). Breast milk in smoothies — we just did so many things that we could, foodwise, to help keep his body strong. Now it’s like, “Oh, God, okay. You want to eat those Cheetos? Okay, fine. That’s not going to kill you.” He sees candy, “Okay, sure.” Things I would never have ever given them before, now it’s like, “Shit. Why not just live? Okay, sure! Do it! Just do it” because there’s no guarantee. There are no guarantees, and I think that’s the worst thing is that there are no guarantees.

Brandy:                   It’s terrifying!

Mary:                       It’s terrifying, but it’s the truth!

Brandy:                   Also, the like, “Why not just live?”

Mary:                       Why not just live?

Brandy:                   The micromanaging of all of the things, and then at the end of the day, what things actually matter? Is it every little thing that we put in our body? And it’s hard to tell because we could be saying this and that could lead to somebody’s cancer in another way, so it’s like there’s no right answer. And, we can’t know.

Mary:                       Yeah. It’s like, “It’s not your fault.” I think that I probably, definitely would have thought and did think, “Fuck! What the fuck did I do to bring this on for my kid? Did I do something? Did I do something wrong? Could I have done something better?” I know that was going on in my mind, but, “No. No!”

Brandy:                   That’s the thing that’s interesting is because of the way that you guys lived, it’s like, actually, no, you couldn’t have because you were doing all of those things already. Somebody who’s like, “Well, they sure ate a lot of junk food…” or whatever people think — “judgy” shit —

Mary:                       That I may have done, too. {laughter}

Brandy:                   But now you know better.

Mary:                       {laughter}

Brandy:                   But you didn’t do any of that, so it’s like, “Oh, shit. This just happens.”

Mary:                       “This is fucking life. Life’s unfair.”

Brandy:                   Damn. What else, from this, has changed in your life? You do laundry every night which is like a remnant from being in the hospital. You’re more lax about what your kids eat and how they live. What else has stuck with you from this?

Mary:                       We were not eating any meat before, and then when you’re on steroids you want salty foods. My son would turn into, slightly like, the hulk and get kind of ragey, but we started eating meat. He started craving meat, so I started cooking it for him and eating it myself. That’s totally different, but that’s been a good thing. Other things, I think, are the good things that came from it, and I feel super lucky to even say that there are good things that came from that. I know that because he’s alive, and that’s lucky. We did experience so much love, compassion, and support from strangers and our school community. Our families were incredible, and we got so much love from the whole thing. I was just going through boxes and someone sent this humungous box of hats, and I still have them. I haven’t don’t anything with them, but we just received all these random gifts. People sent us money and letters like, “I’m so sorry for what you’re going through. Our family’s thinking of you.”

Brandy:                   Oh, my God.

Mary:                       That was incredible. {emotional} My son felt all of that love, too. He had visitors in the hospital. It was a huge learning experience for the kids, too.

Brandy:                   Will you tell me a little bit about that?

Mary:                       What part?

Brandy:                   Any parts. How is Luc different after having gone through it? What do you think the kids learned through it? What were the hard parts? What were the benefits (for lack of a better word)?

Mary:                       My son, he had a hard time before, and I think he’s a person that is hard on himself, in general. He’s just born that way. I remember that he said, “I didn’t know people loved me so much.” That gave him a more positive outlook. He was one of the healthier kids, and let me just say that every time we went in for treatment, all of the rooms were full. I think there were fifty-two beds. They were always full. Sometimes we would have roommates. He saw these other kids, and he knew he was in a better place. He would say, “Oh, my God, I don’t want to die. Life is worth living.” He had been so hard on himself earlier, so this was a huge change in perspective for him. That’s such a big perspective for a ten-year-old.

Brandy:                   For sure.

Mary:                       I think that was really good for him, but that’s a terrible place to be to get that perspective.

Brandy:                   The maturity that must come from that in seeing — your innocence is lost in a way when you see all of that, and when you’re faced with, “Might I die?”

Mary:                       Mm-hmm.

Brandy:                   What about the other boys?

Mary:                       Oh, God, they were so little.

Brandy:                   I remember visiting you in the hospital. Felix was playing on the other bed, jumping, playing with cards, and was getting into all the stuff — just the wrangling that you had to do on top of all that you were already doing.

Mary:                       That was late, too. That was, like, at eight o’clock at night. That was a really long day. Felix was so little. He was three, so he just had to go with the flow. He didn’t even question it. “It’s time to go to the hospital.” My husband and I would take shifts sleeping over every other night. When it was flu season, my husband actually stayed a couple of times for the entire week, which is brutal to never leave the hospital. I remember that I basically had to farm them out. Friends came to take them, thank God. They would take them for a week. It was the first time that I had ever been away from my three-year-old for a week. That was pretty rough. I think that they just went with the flow. I know that parts of it were really scary for them, but they didn’t really have the words to express it. We’ve talked about it now that they’re older. Who knows how that’s effected them, and how that might come out, later. They visited him a lot, and we stayed pretty close.

Brandy:                   How did this affect your marriage? In what ways did it change that? Two people going through a hardship have different coping skills, different communication styles, and maybe different ways that they do things. I would imagine that that’s a trial on your marriage as well.

Mary:                       Mm-hmm, but not until we were out from it, at least for us. I remember one of the nurses saying to me, “This is going to make or break your marriage, so you better have date nights.” I was like, “Oh, ok. Alright, thanks for the tips.” I became really good friends with all of the wonderful nurses, but I wish that she had said that to my husband because she said it to me while I was there. What if someone had said that to my husband instead of me — or to both of us? Why is all of the responsibility on me to make sure that we have date nights on top of fucking everything else? The laundry. The food.

Brandy:                   Wow.

Mary:                       Everything. Making sure that my kids were — one of them was picked up from school. The other one had to have someone with him. It was so much just to make sure everyone was in a safe place.

Brandy:                   The logistics of it.

Mary:                       The logistics. But we got through it. You’re in that survival mode, and you just have to make it and get through it. I thought things were good. I thought, “Oh, my God, this is great.” I kind of like those crazy, intense experiences where you grow. You grow together. This is life. Bad stuff happens. Bad stuff had never happened before — ever — until my Dad died, and then five-months later, my son’s in the hospital. All of this stuff, back-to-back, I’m like, “You know what, I’m growing as a person. We’re getting stronger.” Those are those times where people talk about thinks like, “I came through it!” and all of that. After we were all done with treatment and we were more in the clear, I said to my husband, “Oh, my gosh, I think this has made us closer, don’t you?” And he said, “No.” {startled}

Brandy:                   Oh, wow.

Mary:                       Later, I said, “Did you really mean that?” He’s like, “No, I don’t even know what I was saying.” He was processing everything. It obliterated his sense of safety, completely. It was hard for him because he had to work. He had time off, and then he went back to work. He’d spend time in the hospital and work from the hospital. I didn’t have to do that. I just had to make sure that everything kept going, but he was trying to juggle work. At one point, his employer said, “You know, I think you need to recommit yourself to your job.” I’m sure he was thinking, “Fuck you! My child is — I have to be there for him because we don’t know –.” Legally, you have to be there in the hospital. You can’t leave your kid. 

Brandy:                   I wonder, too, as women, generally — you had friends that you were talking to about this. You were probably processing a lot of your feelings and had a support network that was specific for you with people asking how you were doing. You could unload, and I don’t know that a lot of men have that same support. Maybe he wasn’t talking to anybody, so when you asked him that question, he hadn’t processed it to the point to even realize that something like this could bring people closer. Maybe he was at the beginning of the processing, which is like, “This is bad. This is bad.” Where you haven’t gone through some of the deeper meanings of the things yet.

Mary:                       I’m talking to you from three years out of the end of treatment. I think that we were six-months out of treatment, at that point, but we both went through some PTSD. He would bring it up. Finally, he got it — that he was experiencing extreme fear and stress and responding differently because he was still in that fight-or-flight — that adrenaline mode — survival mode. For him, making sure that we had money, could stay in our place, and all of that was a very different stress than I dealt with because I was just assuming that we had all of that covered.

Brandy:                   Yeah, that sense of safety being broken. That’s such a huge thing to lose.

Mary:                       Yeah, that’s heartbreaking.

Brandy:                   Especially, if his role, or how he sees himself, is the protector/provider of the family, that’s his job. If it’s like, “Well, shit. I can do my job the best that I can, and it all can be taken from me.” That’s awful.

Mary:                       It’s awful. Just talking to you, I’m thanking God that the dudes — the men, the husbands, and the fathers — they need someone to talk to because they don’t talk the way that we talk. When you came into the hospital, I just started sobbing. But he doesn’t get to do that.

 Brandy:                  When the psychologist would come in the rotations in the hospital, would they talk to him, too? Or did they only talk to you?

Mary:                       They probably were there when he was there, but I did not want to talk to the psychologist. It was the last person that I wanted to talk to. She doesn’t have kids. She’s still in school. Do you know what I mean?

Brandy:                   I don’t blame you.

Mary:                       Twenty-something years old — why would I unload my stuff on someone like that? Someone who has never experienced something like this. How could she understand? She can’t understand. Some of the nurses who had been there for a long time, they were amazing. All of the nurses were amazing, but the ones who had been there for a long time, they were there for me. I could unload anything to some of them, and they were amazing.

Brandy:                   They weren’t just nurses, they were, like, mentors, it sounded like.

Mary:                       They were. They were the counselors.

Brandy:                   What did you learn about the medical system that surprised you?

Mary:                       What I can definitely say, for sure, is that it is a pretty well-oiled machine. Everyone kind of knows their place. I would see little squabbles where someone seemed to kind of step out of their place or make another suggestion, and other people didn’t like that. I, personally, see that as not a good thing. That’s not teamwork, but they, too, are in crisis mode trying to save fifty-two children’s lives every day in the hospital. I don’t want to say anything bad towards them for that because they’re locked into their mode of thinking as, “This is how we know how to save a life. This is the best way we have.” If they go outside of that, I think it’s just too much.

Brandy:                   This is probably the way that they know how to get the best results.

Mary:                       They do. That’s what I mean by “it’s a really well-oiled machine.”

Brandy:                   Can we talk about the time when they messed up the chemo meds and almost killed your son?

Mary:                       How about that? Well-oiled machine, right?

Brandy:                   The one time it wasn’t.

Mary:                       Yeah. That might have been after the third round, and we went home. Luc was doing really well. He was at home, and we had to give him the oral chemo twice a day. We picked it up (it was night time), and we opened it up. It looked different. We looked at the label, and it was totally different. It was a much stronger dose probably for an older person, like a teen or like a twenty-year-old. We looked at each other, and I’m just so glad that we were like, “We have to call right away!” What if we had just said, “Oh, maybe they changed it on us?” If you’re in the hospital or if your family is, you need to ask a million questions.

Brandy:                   Yes, the advocacy that you have to do for yourself is overwhelming. It’s every little thing.

Mary:                       Yes, it is because they’re people.

Brandy:                   They’re human.

Mary:                       They’re human. We called, and the nurse said, “I am driving to your house right now.” She drove down, picked it up, gave us the right one, apologized profusely, and then took off. You have to understand. You have to be on the ball. This is so draining to be in that fight or flight, but you have to know everything that is going on.

Brandy:                   Looking back, is there anything that you would’ve done differently or something that you wished you’d known that you didn’t know?

Mary:                       No. I don’t think so. I don’t think there’s anything that I could’ve prepared for or known beforehand. I had gone through all of that preparation while being there with my Dad and going through everything with him because we did ask a lot of questions. I have a sister who’s a nurse and a sister who’s a doctor, so they were there. They had all of the questions. I learned a lot from them: what to ask, how to ask it, and what’s available for you to ask. People don’t know. I knew only because of that. You can ask questions, and my sister would have to tell me all of the time, “You’re so nice. They’re not going to be mad at you if you ask questions.” The patients that do the best are the ones that ask the most questions. She would have to push me a little bit, but you have to — I don’t know if it’s to get a thicker skin or just trying not to be embarrassed or feel bad — but you have to know what’s going on with your kid, and it’s your right to ask questions.

Brandy:                   Right.

Mary:                       They might say “no.” One time, I asked this nurse — I think we only had her once, and Luc was throwing up. I just asked her to move the meds to a different time. It was, like, an eight-hour shift that they would have the meds going eight hours in between, and it seemed like he needed them a little closer together. I asked, and she was the only nurse that was strange. She would stare at me, and she was weird. She said “No,” but she didn’t offer any explanation and I didn’t really understand. I had such a weird vibe. I didn’t even want to ask again and I didn’t understand because he was suffering and didn’t did need the meds closer together. She wouldn’t even ask. But I let that go because I knew that we could get through the next eight hours, and she’d be gone. I could ask the next nurse.

Brandy:                   Right, and hopefully have a compassionate answer.

Mary:                       Right, and then we did. Sometimes you just have to wait.

Brandy:                   When you asked that next nurse, did she switch it for you?

Mary:                       Yes.

Brandy:                   That’s wild how that works.

Mary:                       Yes. It’s important to know your nurses and be friendly with them if you’re ever put in that position.

Brandy:                   And this goes for birth, too. When people say, “I’ve had a great experience at this hospital,” and somebody else says, “I didn’t.” The unknown aspect of it is that you don’t know which care provider and which nurses are going to be there that day. Depending on how long your birth lasts and/or if you have a nurse who is just a “no” on everything, who’s there for your entire birth, that’s a different experience than having one of the nurses that’s a little bit more kind or creative or resourceful. You can’t control how that’s going to go down. Sometimes when people during birth would say, “Oh, I just love my doctor. My doctor’s so great.” It’s like, “Yeah, but your doctor comes in at the very end. So how do we prepare for what it might look like if you have to deal with somebody who’s providing care that isn’t being respectful or listening to you?” That’s a hard lesson to learn, especially, for personality types that tend to be polite and not wanting to upset things and be friendly.

Mary:                       Yeah, like me.

Brandy:                   I also think that you’re good at sticking up for what you need in the moment. I’ve seen you do it.

Mary:                       Thanks.

Brandy:                   Maybe that was a catalyst for it, but —

Mary:                       For sure. Or made it stronger. Yeah, and turning forty.

Brandy:                   And not giving a fuck anymore? {laughter}

Mary:                       I can’t take shit anymore. Yeah. I don’t have time for this. {laughter} That’s something, too, that when my Dad was dying — life is so short, you don’t have time to let someone be a jerk to you. You know what I mean?

Brandy:                   Yeah! You’ve told us a couple of things about what this has taught you about life, and I was curious if there was anything else that you wanted to add to that. What clarity came from this experience? Was there anything else that you, all of a sudden, knew in a different way or became really clear to you after having gone through this? Did this effect your work or the path of your career?

Mary:                       Yes. One, I think that it’s crystal clear that life is way too short to dick around. You better get it together, do what you enjoy doing, be honest with yourself, and be honest with other people. There is no other time. This is it. After my Dad passed, I applied to grad school for the third time. I thought, “Okay, now I’m going to do it. I’m going to get my master’s degree in social work because I’ve always wanted to do that.” I applied, again, to USC, and I got in. But I got the news that I got in during the first week that we were in the hospital with Luc. I remember that we had a social worker, and I was looking to him for advice. I was still like, “Everything’s going to be okay.” I had no idea what to expect with treatment and how long it was going to feel and all the bumps — because he did get several infections from antibiotics and things, and we had to go back into the hospital several times in between treatment — so I had no idea that was coming. I had no idea what life was going to be like. I don’t even think I had even had that meeting where the nurse said that I was going to have to do laundry every day. I remember looking at the social worker, and I told him that I had just gotten into USC. This was a huge dream of mine, and he gave me the nicest smile and was like, “Well you can always apply later.” I was like, “What are you saying? I can’t handle this?” He’s like, “It’s just going to be so much work.” I deferred for a year, and I’m so glad that I did because there’s no way that I could’ve handled it. I, literally, had no idea what this ride was going to be like. It was harder than I thought and worse. It was so all-encompassing. I couldn’t give attention to anything else at all.

Brandy:                   Did you ever have a moment where Luc’s cancer wasn’t on your mind or you weren’t dealing with it?

Mary:                       Never.

Brandy:                   Did that never happen?

Mary:                       Never. I’d go home (because it would be my turn to go home), and Jeff would be at the hospital. I’d be doing puzzles with my two little ones and only be thinking about Luc and that I wasn’t there to see everything. I was hoping my husband was asking the right questions or getting all of the information. That was really hard to let go of that.

Brandy:                   When you sometimes feel that you can’t send your husband to the store to get the right yogurt — You know, you’re like, “I’m going to give you all of the details about which yogurt to buy,” and if they can’t buy the right yogurt, it’s like, “How on earth can they ask the right questions about the medicines, chemo’s, side effects, benefits, alternatives, and all of the different things?” That would be hard. Did you have a conversation with him that was like, “Here’s what I’m going to ask, and I want you to hit these marks every time. Any time they suggest something, I want you to ask certain questions.” Did you have to train him on that, or was he pretty good about it?

Mary:                       I think I would be a little bit better at advocacy. There were a few things that happened early on. I remember that he threw up one time (he didn’t throw up often), and the fellow was there. 

Brandy:                   You’re talking about Luc throwing up, right?

Mary:                       Talking about Luc throwing up in the hospital. I think it was at the very beginning. He had only done it a couple of times. He threw up, and the fellow was there who was not, necessarily, his oncologist, but he’s there studying. He’s kind of a different position. He’s not a nurse. It wasn’t traumatizing. He just threw up. Kids throw up. We got it cleaned up, and the fellow said, “Oh, we need to give him this drug.” Atrazan? Something like that. It was an antidepressant. I said, “Well, what is that for?”

Brandy:                   Was it Ativan?

Mary:                       Ativan! Thank you. Yes, Ativan. He wanted to give him that, and I looked at him and said, “What is that for?” He’s like, “Well it’s an antidepressant, but it helps with nausea.” I said, “No, we’re not going to do that. No, thank you. Please don’t do that.” He said, “Okay.” But what if I, or my husband, hadn’t been there? What if my husband had been like, “Sure, okay. That might help him.” But I knew that wasn’t necessary. I said, “He just vomited. That’s all.”

Brandy:                   What?!

Mary:                       I know that he was uncomfortable, and I know that he wanted my son to be okay and not throw up again.

Brandy:                   He had a positive intention, but —

Mary:                       He did, but it was such a big thing to throw at a body that’s taking so many meds already. I just thought that was crazy, so I let my husband know, “FYI, if they ever want to do that, say ‘no.’” We’re on the same page, but there were things that he wouldn’t remember. “Oh, I don’t remember what they said.” Oh, my God, I just wanted to bang my head on the wall a couple of times. But, generally, that went pretty well.

Brandy:                   I know that that’s a thing — when you get results from a doctor or when you’re in a conversation with one (a meeting) — when you leave, you can be like, “I don’t remember anything.”

Mary:                       Yes!

Brandy:                   One of the things that I do is turn on my voice recorder on my phone when I’m in meetings like that because you’re in the moment when you’re getting the information and some of it’s not pleasant. You’re trying to think about what they’re saying, and then you lose half of it.

Mary:                       You’re just trying to understand and think and process. You’re right, and then you forget.

Brandy:                   For anybody out there who feels like they go to doctor’s appointments and can’t remember anything, just go to that little app on your phone and do the voice recorder.

Mary:                       Yeah, take notes.

Brandy:                   But, sometimes, even the taking of the notes pulls you away from everything.

Mary:                       Back to your question, I ended up starting grad school a year later, and it was so exciting. I was like, “I’m a person. I’m a person in school. This is so exciting. I’m talking to teachers. I’m a person. I’m not just a mom.”

Brandy:                   And a caretaker.

Mary:                       Oh, my gosh, yeah. It was so cool, but then I could not hack it. I could not freaking hack all of those papers. It was so rough.

Brandy:                   You had three kids.

Mary:                       I know, what was I —

Brandy:                   No, I don’t mean to say, “What were you thinking?” Just to validate, this was one of those things that had you not have tried it, you probably would’ve always gone, “I should’ve tried it because I thought I could’ve done it.”

Mary:                       For sure.

Brandy:                   The fact that you tried it, you got the information that, “No, this is too hard,” you tried to juggle that whole other thing on top of all of the parenting that you were doing, and the kids and everything, had to be overwhelming.

Mary:                       It was so overwhelming. Nothing changed to make it easier for me to be a student. I still did all of the childcare, and my son was still at a place where I was focusing so much on him, worrying about him, giving him medication, making sure he had his supplements, lining things up, doing the laundry, taking them to school, helping with homework, it was crazy-making. Then to do school on top of it, in my “off hours,” —

Brandy:                   I think I remember you asking me, “Do you think I can do it?” I think I said to you, at some point — I don’t know if I had written my book or was writing it during that time, but I knew what it felt like to try to add some other huge project onto your schedule, and I think I had said to you, “The only way it’s going to be possible is if you have childcare because these aren’t things that you can just fit in during ‘off time’ because that doesn’t exist.” You would actually need somebody doing your job as Mom so that you can use that time to do something else. Even that is so hard. Financially, after you’re paying for school, to even have the means to do that, but also the flakiness of babysitters – it’s not consistent care.

Mary:                       So real. Oh, my God, I’ve experienced too much flakiness. I think, “Was I a flaky babysitter?”

Brandy:                   We all were. I think about the same thing. I think about when I was younger, and my friends were wanting to go hang out at the mall. I was like, “Oh, I can’t do it today. I’m sick or whatever.”

Mary:                       Yeah!

Brandy:                   Then you just bail, and you don’t realize that you’ve left this person totally in the lurch.

Mary:                       {laughter} It’s awful, right? We had no idea.

Brandy:                   What advice would you give to other families or other parents going through a health crisis like this?

Mary:                       Assemble your team. Ask for help. Tell people that you’re going through it, and let them know that you are on the brink of going crazy. We were so lucky with our community because we had been at our school for a few years, and I did a lot of volunteer work there. I knew a lot of people. I would come home, and people would be doing dishes in my kitchen.

Brandy:                   Like random people?

Mary:                       People that I knew from school. They would just come in, and they would clean my house. People brought us meals. You cannot cook because you have no brain space or time to devote to that. You’ve got to ask people to take your kid. I think that if you’re in that situation, it’s going to be ok. You’re going to get what you need if you ask for what you need, for the most part. I really feel like, for other people that are on the other side that are watching their friend in distress or can be there to help, just don’t judge people. Do you know what I mean? I’m thinking about friends that are there to help out during those times. It’s important that they know what to say. Nobody knows what to say when their friend is going through a health crisis. Am I making sense?

Brandy:                   Yeah! That’s the thing that’s so tricky.

Mary:                       Yeah, it is. Everyone’s different.

Brandy:                   This is the trap that people fall into. They are scared that they’re going to say something wrong, so they say nothing at all.

Mary:                       Right.

Brandy:                   From your point of view, are there any tips or guidelines for what people should or shouldn’t say? What did you find the most helpful and supportive?

Mary:                       Just call. Just call them. Text them. If they can’t get back to you, they won’t. Don’t take it personally. Don’t take anything personally, FYI. Just call them, and say, “I don’t even know what to say, but I’m here for you.” It’s as simple as that. “I have no idea what to say. I’m so upset for you.” It could be something like that, or, “Fuck, are you ok? What can I do for you?”

Brandy:                   Yeah, those are pretty safe bets.

Mary:                       “Can I bring you coffee? Can I bring wine to the hospital?” Not really, but people would bring us all sorts of things to the hospital. It was always welcome, and we were so grateful. Never say anything like, “Well, if you hadn’t have done X,Y,Z…”

Brandy:                   Oh, God.

Mary:                       Or, “If you had just done ‘this’ and ‘this’…” never say that.

Brandy:                   If you’re a person that would say that —

Mary:                       Just don’t. {laughter}

Brandy:                   Take your fist, move it kind of close to your face, and really swiftly punch yourself in the fucking face.

Mary:                       Jam your hand in your mouth. Just don’t talk. Don’t say it. {laughter}

Brandy:                   Did people do that do you?

Mary:                       Yeah, a couple of people did.

Brandy:                   {sigh}

Mary:                       But we also had the friends who wouldn’t call because they didn’t want to bother us. Just call! I guarantee you that I would rather have seen that you called than hear that you didn’t want to bother me. It’s not going to bother me. What bothers me is that you didn’t want to call because you’re uncomfortable.

Brandy:                   Right.

Mary:                       Which is understandable, but still just call. Just text. Send a letter. That’s important to let people know that you’re there for them. It’s just such an uncomfortable thing when someone is in pain or suffering, and you don’t know what to do. I understand that but suck it up.

Brandy.                   Right. With texting, you don’t even have to call and talk to the person. You can send a text that says, “What can I do for you?”

Mary:                       Yeah. I don’t mean to sound bitchy, but it’s just —

Brandy:                   Oh, Mary, you don’t sound bitchy at all. That’s a normal thing. That’s reasonable. In terms of people making you food versus people bringing you take-out or gift cards for take-out, what did you prefer? Sometimes it seems that people are like, “I want to make you something for dinner,” and it can be even more work to talk that person through what your eating preferences are and what people in your family don’t like, especially if you have kids who are picky. I’ve noticed that times that I’ve offered to make people food, it doesn’t go anywhere, and I think that’s part of it. My usual go-to is, “Where is your favorite place to eat?” Then get gift cards for it.

Mary:                       There were a few people that took on that responsibility, and we just said, “Okay, this is where we eat. This is where we love to eat. This is where we like groceries from or take-out from.” Someone else would do the work, so we were so lucky because you were so involved, and I have a couple of other friends that were like the guardians of our little bubble. They were the go-between, and they would field those questions so that we didn’t have to. We just would say to them, “We like food from Chipotle,” or wherever. That was easy. Sometimes people wanted to make things, and they would text me and ask if it was okay. I’d say “yes” or “no.” When you’re sitting in the hospital, you’ve got so much time to text.

Brandy:                   Yeah, right.

Mary:                       You’re just sitting there watching tv or whatever while your kid is on their iPad or whatever they’re doing.

Brandy:                   That’s such a good point. If we’re going to reach out and say to people, “Hey, I want to make you this thing,” then, maybe, give options instead of, “What can I make you?”

Mary:                       For sure. Yes, be specific. Say, “I want to make this. Is this okay? I can add in meat or take it out.” Be specific so that your friend doesn’t have to think.

Brandy:                   Exactly. That’s the mental work. They’re already having to micromanage things, and they’re also having to meal plan. Even though the person’s making it, it can just be a lot.

Mary:                       Oh, my God, we were so grateful to receive that. If you do that for someone, they’re going to be so grateful. Whether they can express it or not, they’re going to feel so thrilled.

Brandy:                   Right.

 Mary:                      Even that you cared to do that.

Brandy:                   I read something, when I was in the hospital for two months, in an article that was so helpful. I wondered if this resonated with you. It was a drawing of a bunch of circles. There was the middle circle and then a ring around it and then a ring around it, so it kind of looked like a bullseye. And the theory was that the person who had been through it — had been through cancer — she was talking about how, when you’re going through a crisis, sometimes people will dump their stuff on you, and you’re the one going through the crisis. She has this theory that you start in the middle and the people going through the crisis are the dot in the center. Every ring out of that are the people closer. There’s your husband and your kids. Out from that is probably grandparents and then friends. The theory is that you dump outward and support inward. What that means is if you look in the hierarchy of the ring, and you’ve got something that you’re questioning or you’re unsure of or you think somebody should’ve done something different or you’re really scared about something — if you’re on the grandparent’s ring, you wouldn’t dump that inward. You would only dump that outward to your friends.

Mary:                       Right. Yes.

Brandy:                   That makes so much sense. I found that to be so helpful for my experience, too. People — and maybe people think that they’re showing their concern for you when you’re in these things — but when they’re having a meltdown about your situation to you, and then you are caretaking them about your situation —

Mary:                       No, thank you.

Brandy:                   No, thank you. I love that. Dump outward. Support inward.

Mary:                       Yes. 100%. I know that I’ll never forget — when you said that, all I can think of was — at my Dad’s funeral — we had two funerals — at his first one, a family friend came up to me, and I was fine. We had been through the wringer. We’re at the funeral. We’re here to celebrate his life. I had my kids with me, and I’m holding it together. A friend of his came up to me and was just sobbing and sobbing. “He shouldn’t have gone. It wasn’t his time. He didn’t need to go.” I remember saying — I didn’t know what the hell to say to him because he’s dumping it on me. I thought, “I was there when he died, Man. I know.” I said, “Well it was peaceful. I know. I know, but it was peaceful when he passed.” He replied, “Well those are just platitudes.” I’m like, “AGH!”

Brandy:                   “Dude, get the fuck out of here.”

Mary:                       Take it somewhere else. I know, I was like, “I love him so much, but I can’t take your stuff right now. I’ve got to be here for his funeral.”

Brandy:                   I love that you were consoling him, and he was like, “Don’t console me like this.”

Mary:                       I know!

Brandy:                   “Are you serious?”

Mary:                       So nuts! That definitely happened a couple of times when Luc was in the hospital, and what are you doing to do when people do that to you?

Brandy:                   People are human.

Mary:                       They are, and they’re upset.

Brandy:                   It makes you realize, when you’re the one going through it, that, “Oh, shit. How many times have I done this?” I can remember one specific time that I did this so terribly to a friend of mine who was going through cancer when we were in acting school. I remember I was at her house and I was helping her get all of her medical bills in a binder because she was having to organize all of this. I remember sitting there, and I don’t remember what came over me, but I said to her, “What if you die?” We were having this moment where we were talking about things.

Mary:                       {gasps} Oh, sure.

Brandy:                   She kind of looked at me and was like, “I don’t know!” I have carried that moment with me on a —

Mary:                       You were so mortified.

Brandy:                   I wish I could undo that moment. I don’t know that I’ve ever told her — I’ve meant to tell her, but I don’t know if I ever really have.

Mary:                       Now you’re telling her. {laughter}

Brandy:                   Yeah. {laughter} I feel like I need to reach out to her, specifically, because I’m sure she’ll remember that. Again, it’s like the flakey babysitter thing. When you’re in it and somebody does that to you, you have a little bit of compassion because you’re like, “I’ve probably done that.”

Mary:                       “I’ve done this, too.”

Brandy:                   But here’s a guideline to hopefully not do that to people.

Mary:                       Yeah.

Brandy:                   Dump out. Support in.

Mary:                       Ding. {laughter}

Brandy:                   T. M. Trademark. {laughter} Ummm, I guess the last thing that I would ask is that, in the beginning, it sounded like you were just dealing with the survival mode and the adrenaline. As things mellowed out a little bit, did you find different coping strategies that you had never had to use before? How did you deal with coming home and living this life? Was there anything that you relied on or anything that helped you? Whether it’s healthy or unhealthy.

Mary:                       Oh, my God, I think there are a few. What do I really want to tell you? {laughter} I started drinking. I did not drink really at all, except for in college. I remember — this is back, again, when my Dad was sick — one of my sisters made margaritas, and it was so amazing and fun to get tipsy again. I started drinking wine so much more. I never did that before. I don’t really do that very much now.

Brandy:                   It was like — what would you call it?

Mary:                       Like a sedative.

Brandy:                   I can imagine that if you don’t have any moments away from this huge crisis and you have something that softens that a little bit, it would feel like, at least, some sort of something.

Mary:                       Yeah, and I have three kids. Definitely, that was something that I relied on. I also used CBD oil. There’s that one time that I had too much, and that was —

Brandy:                   Oh, my God. {laughter} I forgot about that!

Mary:                       FYI, I’ve never done drugs before in my life. I have such a phobia, and I think it’s just not for me. I’ve never wanted to do that. We were using CBD when my son was out of the hospital, in place of his anti-nausea meds, with incredible results. I could see that it would reduce his anxiety because he’d get stressed. He was nervous when we got home and wondering if he was going to start throwing up. When he would come home, it was like, “Okay, I’m home now. Now what?” He would just be in bed in the hospital and everyone would take care of him, so coming home was just a little different because of all of the siblings and all of the normal life going on. I could see that he would be really anxious about what to expect and thinking, “Am I going to throw up?”

Brandy:                   Yeah.

Mary:                       It wasn’t quiet like it was in the hospital. He loved that aspect. He loved going because everyone took care of him, and he was the center of attention. It was a learning curve whenever we would get home. We started giving him CBD oil. It’s legal, and it would almost immediately take effect. I could see him become calm, and he wouldn’t throw up. Just a couple of times, he threw up: once outside of Whole Foods and once right by school. {laughter} I started taking it, too, because I could see how calm he was. I’m always such calm person, but this really —

Brandy:                   Tested you?

Mary:                       Yes! My mind was just racing. I would take a little bit, and I’m talking about the tiniest drop. One time, I took way too much on accident! It was a syringe, and —

Brandy:                   And Luc came up while you were doing it?

Mary:                       Yeah and squeezed it! It just exploded in my mouth. It was under my tongue. There was so much — at least a teaspoon, if not more. That’s a lot! I remember trying to scoop it out of my mouth to get rid of it because it tastes bad. Then, like, two hours later —

Brandy:                   Did you call me or text me?

Mary:                       I called you probably several times. I called several people. {laughter} I left all of these messages for people. I thought I was dying. I thought I was having a heart attack. I’m walking outside in a circle without my shoes on, and two of my children are home.

Brandy:                   Before we knew what was happening, it was super scary. I remember you being like, “My heart feels like it’s racing. I don’t know what’s happening. I don’t know if I’m having a heart attack.” I was super worried about you. I think I left to come over.

Mary:                       Yes! You did.

Brandy:                   Then when I came over, and you said to me, “Jeff’s on his way home from work, but I made him stop by the grocery store because I want ice cream so bad.” I was like, “Oh, this is what this is.”

Mary:                       {laughter}

Brandy:                   I had to try to persuade you that you were not having a heart attack and that you were high.

Mary:                       Yes! I was going to call an ambulance. I would have been that person. I would’ve been that mom!

Brandy:                   You were outside, in the greenbelt area, walking in circles.  There was something funny that you were saying. I wish I had a video of this moment, but there were things — it was like you were tripping out, but it was, in my mind, so clearly a pot-related incident.

Mary:                       {laughter}

Brandy:                   But you had no frame of reference for it. Everything that you were saying — it’s almost like you were saying, “I just really want to listen to The Grateful Dead, and I want to get a cheese pizza. Isn’t life so amazing?” You were like checking all of the boxes for a high person, but you didn’t believe that that was happening.

Mary:                       I was so embarrassed, too. I knew that I was saying things, and I couldn’t control it. I was mortified, and I was freaking terrified that someone would find out. {laughter}

Brandy:                   Thank you for that reminder. I had forgotten about that moment. 

Mary:                       That’s something that I can laugh about now, but in the moment, I was just horrified that I had done that to myself, so embarrassed because my kids saw it. We still laugh about that. Luc will say, “Remember that time that you were acting weird?” {laughter}

Brandy:                   And how good was that ice cream when Jeff brought it?

Mary:                       Oh, my God, I ate the entire thing, and then I got in the bath. It was great, but terrible! I don’t know why people do it. That’s what I was thinking in my head. I know my experience was weird. I tried a lot of things. We tried a lot of alternative things when we could.

Brandy:                   You were like a shaman of sorts — like an apothecary.

Mary:                       My own apothecary.

Brandy:                   Yeah. You had your own ideas about things that you’d researched about that people had done trials on with cancer. You were doing this whole other regimen that I think really had something to do with how great he did and how quickly his cancer dissolved.

Mary:                       Thanks. I feel like it really helped rebuild him. I think he’s even healthier now than he was before just from implementing all of the different things that we did and eating differently, too. We’re almost four years out from when my dad died, so almost four years out from Luc’s diagnosis. Now, I finally feel like, “Okay. I’m back to myself.” Whatever that means.

Brandy:                   Wow.

Mary:                       Yeah. It just took so long.

Brandy:                   You’ve been through the wringer, for sure. It’s so crazy to think about how innocent we were. I think about you and me before we became mothers. Where were we at? What was our gym called? Bodies in Motion?

Mary:                       {laughter}

Brandy:                   Hanging out in the hot tub probably talking about hot celebrity dudes or something.

Mary:                       Yes! Or dishing on how crazy Tom Cruise seemed. {laughter}

Brandy:                   Yes, that was a topic of that era. And to think that none of us had any idea that you would be dealing with a kid with cancer. Life is savage. It’s also beautiful. It’s all of the things, and you never know what’s going to be dropped in your lap.

Mary:                       You never know. It’s like, “Don’t judge people. You have no idea!” I say that coming from someone who definitely would have had thoughts about doing chemotherapy or anything like that.

Brandy:                   Do you think before this, had you have known somebody who had cancer and went through chemo, that there might have been a part of you that’s like, “Oh, they should try other things.”

Mary:                       For sure! That’s totally being immature and naïve and not having that life experience or understanding of, “Oh, my God, no one’s going to escape life.”

                                    {outro music}

Brandy:                   Mary’s the best. There’s that. And you can find her online. She works with women by using hypnosis. Her website is http://www.maryscalise.com, and you can also find her on Facebook. She has a passion for working with women and mothers to help them get clarity, feel grounded and calm, lovable, confident, peaceful, and present. For anyone near St. Louis, Missouri, she is also presenting at the Heartland Hypnosis Conference there on April 26th. I want to say that I truly hope that none of you have to navigate what Mary did, but I just know that life doesn’t quite work that way. For those of you who are in her shoes, I hope this helped in some way. I think some of the major insights and lessons that she learned along the way and shared with us here are applicable for all of us in any kind of crisis.

Brandy:                   Hey, hi! If you like what you hear, don’t forget to subscribe, leave a rating, or better yet, a review. As always, thanks for listening!

** As always, thank you to Scott Weigel and his band, Seahorse Moon, for providing me with that jaunty intro and outro music. You guy are awesome. Check ’em out on iTunes.