Terrible, Thanks for Asking

A Simple Choice (Part 2) - Transcript

This is a transcript of a “Terrible, Thanks for Asking” episode entitled “A Simple Choice (Part 2).” The text may not be in its final form and may be updated or revised in the future for accuracy.

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I’m Nora McInerny, and this is “Terrible, Thanks for Asking.”

This is a continuation of the episode just before it in your podcast app. So if you have not yet heard the previous episode, stop right now! This is not a place to start. If you’re a first-time listener,  no no no no no, you don’t get to start here. I’m so sorry. I can be slightly bossy. But you’re gonna wanna go back, listen to the episode from the week previous, and then you may have this one as a treat.

For those of you who already listened to the other episode, at the end of that episode, Mark had told his girlfriend Melissa that he was going to have children with her. This is no small decision — it never is — but it was a particularly brave one. Mark had lost his mother to cancer when he was just 19. He lost his wife Karen to cancer 15 years later. And three years after Karen’s death, he was in love with Melissa and willing to make this huge, scary leap with her. 

For both of them, things feel good, and they feel hopeful. This is Melissa.

Melissa: OK, good things are going to start happening now. Like, we're going to start having kids. We're going to, like start the next chapter. And it's gonna be full of wonderful things for Mark and for I. 

A year and a half after that conversation, the two of them are married, and Melissa is pregnant. The wonderful things ARE happening! 

That’s Mark and Melissa seeing their baby’s heartbeat at their six-week appointment, that little butterfly wing rhythm of their future child.  

Mark: It was pretty amazing. The lady was surprised that we would see it already. And at that point I'd still feeling like, is this real? Like I'm not fully comprehending what's about to change in my life at that point. I'm just thinking like, “Things are going well. That's a good sign.”

Melissa was feeling sick, which was also a good sign, and their next appointment was at 10 weeks. Mark goes with her again. He’s there. He’s ready to document.

Melissa: And the ultrasound tech, she was scanning my belly and she wasn't saying anything, but this was our first pregnancy, so I didn't really think anything of it. And then she came back with a doctor and they told us that there was no heartbeat. And it looked like we had just lost the baby, just like within the last day or two. And we just, we both broke down. We were both devastated. And it was... it was way harder than we would have anticipated. A pregnancy loss is just so much harder than you realize until you've been there. So.

Mark: I don't really swear very often, but I think my actual words were, “What the fuck.”

Melissa: And nobody talks about like, the hard part. Like, I mean, it's all hard, but nobody talks about, like how painful it can be.

There’s so much blood that they spend the next day in the emergency room. And Mark is back in the hospital, taking care of the woman he loves. And nobody would blame Mark for pulling back and saying, “See! See! Told you! My brain was right! The worst case scenario DID happen! Again! All of my previous losses didn’t affect the statistical probability that 1 in 4 pregnancies are lost!”

Instead, the loss of this pregnancy reaffirms that yes, this is what they want. Both of them.

Melissa: So after we lost the first pregnancy, we knew that at that point we wanted it badly. We didn't know how badly we wanted it until we lost the first one. 

The first one. Because they do get pregnant again! 

Melissa: We were just over the moon. We were taking videos of, like, everything right away. But we were terrified. I think that's like some of the first words that came out of my mouth was like, “I don't want to lose this one.”

There is a balancing act after loss. You learn to put one foot in front of the other, hoping for the best and preparing for the worst. Hedging your bets and counting your blessings. Trying to enjoy what is while crossing your fingers and toes that that future will take care of itself. That it will all be okay. 

And pregnancy is intense. Your body is 3-D printing a human being! That is actually how my child put it to me recently and I was like “Oh my goodness, buddy. You’re right. I did 3-D print you.” After a pregnancy loss it feels like every twinge, every ache could be bad news. And this pregnancy is different than the first one. 

Melissa: We were both nervous the whole pregnancy. And I bled from like five weeks until 13 weeks. We were having, like, frequent frequent ultrasounds. It seemed like every week we thought we had lost her. 

Nora: When you wipe and there's blood and you're like, GASP. 

Melissa: Oh, my gosh. And you just, when you've already had that experience, that blood means miscarriage, then that's where you go immediately, like. And people can tell you like, “Oh, it's probably not.” But in your head, like every single time I started bleeding, I completely put, like, barriers up. Like I completely just assumed that she was gone. And every time we had an ultrasound and she was there, it was such a shock. 

And so we did that the whole pregnancy and, you know, ended up getting like a little Doppler so we could listen to her heartbeat sometimes at home just for reassurance. And then I think it was maybe early in my third trimester, I started bleeding again. But then everything was okay again. There is once or twice where we ended up in the hospital getting assessed again because I was worried about her like if she wasn't moving and...

Nora: Oh yeah. 

Melissa: Right. You know, it's you're constantly thinking something's wrong. And it's not like a “when” she gets here, it's like an “if” she gets here. So it's like our life is kind of at a standstill because we didn't want to go too far because something might happen.

We’ll be right back.

We’re back, and Mark and Melissa are pregnant again. And they are very, very nervous. They’ve lost one pregnancy already, and Melissa keeps experiencing bleeding. 

They have all the normal nerves and anxieties that any couple has after a pregnancy loss, but there’s also this: Their daughter’s due date is March 21, 2020.

That date hadn’t meant much when they first got pregnant or during the holidays. It was a due date, just a countdown. And then...

News Clip: “Now to growing concerns about the deadly coronavirus officially hitting the U.S. Here’s what we know: a Washington State resident fell ill after returning from Wuhan, China, where the outbreak began. Officials now say more than 400 people have been sickened, and 9 people have died. The World Health Organization is holding an emergency meeting right now.”

This is a highly contagious cardiovascular virus wreaking havoc on people around the world, another Worst Case Scenario that not even the most anxious person would have dreamed up.

Melissa: It was very unnerving. Like it was supposed to be Mark and my sister who were going to be in the delivery room. And a couple days before they said that, no, actually, my sister couldn't be there. So Mark could still be there, but no other visitors or anything. And I was kind of worried for how he was going to, like, react to me being in labor, because with Karen, she was just in so much pain. And so quite often, if I'm like in pain or I'm sick or nauseous or anything, Mark right away, like PTSD goes right back to Karen. And he really, he kind of panics. So I was worried about how he was going to do with me in labor. 

But Mark was a champ. 

Mark: I kept myself pretty occupied with, like, taking tasteful video. And I had the job of holding one leg. So I was doing, I was doing my part. 

Nora: Why do they make men do that? They're like “you put your hand here” like. Like, here, touch a leg. You’re like, ike, got it. 

Mark: Yeah. It made me feel good. I did all right. But it was, I mean, thank God for the epidural. Because I think before the epidural, when she was starting to really feel it, I was pretty frightened for what was about to happen. But after that, I was just kind of in the moment, just really taking it all in. And during the actual labor, like I wasn't thinking about COVID at all. It wasn't until after it was over and then the relief of Isla being on Melissa's chest, that I was kind of sitting there drained from having been up for like 48 hours. And then all of a sudden, all the thoughts about COVID starts sinking in. And like everybody in the hospital, was kind of worried about COVID, because they were all talking about Italy and what was going on there. And it was, it was crazy. My mind was all over the place. 

Their daughter, Isla, is here. 

Nora: What is it like to hold her for the first time? 

Melissa: It was unbelievable. Like, we knew that we were going to love her so much. And I mean, we did love her before she was born, of course, but like we were prepared for her to be, you know, like a funny looking newborn. And we didn't know how it felt to love your own child. And like, immediately, like, as soon as we laid eyes on her, before they even put her on my chest, I just remember her, like, in the air — she hadn't even come to my chest yet. And she, I just looked at her and thought like, “Oh, my gosh, she's so beautiful.” She had, like, the biggest plumpest lips, and she was just so cute. And we just both instantly were in love. And in our video like of right after she was born, I keep saying, like, “Come on, come on.” Because I don't know what I thought was wrong. I think I just, like, loved her so much immediately. And the nurses were like, “What do you think is wrong? Nothing’s wrong. She's fine.” But I just like immediately was so in love with her and I just wanted her to be OK. And it was just so much relief. 

The relief was short lived. Because now what? What does it mean to bring a brand new person into the world during a global pandemic?

Melissa: We hadn't really thought about what it would mean for us when we brought Isla home. We'd still been planning on her meeting like our immediate family and everything. And when I was in labor, the doctor was really saying, “It would probably be good for you to just quarantine with her. You know, she can meet your families later on down the road.” It was really overwhelming at first, not Isla, but just knowing that we couldn't share her with anybody. It was really hard, because we're really close with our family and our friends. And so to not be able to share her when we just like were so in love and it was like the happiest time of our lives. It was really hard. But aside from the COVID aspect and having to quarantine, it was amazing. Like she was so, she was so good to us. She was the perfect baby, like she was so little. But she slept so well. She, like, barely ever fussed. Only when she was hungry. And even when she fussed when she was hungry, she didn't ever like, scream cry. But she at the same time was still like active and stuff. And she was such a good little eater. And those weeks, Mark took extra time off work at the beginning. And we just the three of us did a ton of like, cuddling and we would play on the floor and Mark was writing her lullabies. So we would sing her lullabies and we would read her stories and we would go for walks and we just like, hung out the three of us in our own little bubble. And we were on cloud nine. 

That’s the first four weeks. It’s strange, and it’s perfect. It’s the best version of having a baby during a pandemic. They’re healthy, they’re happy. Isla is absolute perfection.

Melissa: I took a picture of her, and I noticed that like her eyelid was a tiny bit droopy. But I have an eye like that, like I have one of my eyelids isn't as wide open as the other one. So I kind of thought that it was probably just that. And I had sent this picture to my sister, and I said like “Her one eye is like a little bit squinty.” But we both thought, like, ehh that's not a big deal. And then the next day we were out for a walk. And like we ran into somebody and stood a ways away from them. And they said, oh, they looked at her from afar and said, “Oh, she's healthy.” And we said, “Yeah, she's healthy. She's amazing. She's perfect.” And then we got home and we were cuddling after our walk. And I was looking in her eyes. And all of a sudden I noticed that her left pupil was far larger than her right. Which, where I work, if we see that, we automatically start thinking somebody has cancer in their brain. They have a brain tumor. So I immediately panicked. And we called Isla's doctor and sent them some pictures, and they got us in for an appointment, but they said that the appointment was about a week away. But the doctor looked at the pictures and said, “She's doing fine, otherwise? She's acting like a normal baby. She's eating, she's sleeping. She's…”

Nora: Melissa, I did all this stuff with Ralph. I was like, “Look at his eye. Look at his eyes. I know it. I know it.” Like brought him to every single doctor. Like, even now I'm like he's got like a inflamed lymph node and I'm like hmmm, I know that's not good. Oh, his leg is bruised. He has leukemia. Like, I just…

Melissa:  You can't help but do that when you've, like, been around cancer and your loved one has been sick. You can't help but do that.

Nora: So what is this triggering for you, Mark?

Mark: I think at this point, because we were new parents, I was just thinking we were overreacting and I was trying to just go with that. So I took my job as trying to like, keep Melissa calm about these things that she was worried about at the time. But I was just thinking, like, worst case scenario, she's going to live life with, like a droopy eye and maybe some kids will make fun of her. And actually, at the time, we thought that that was a huge deal and we were kind of worried about that.

Melissa: That seemed like the worst, like at the time that felt like a terrible thing if, like, she was going to be mistreated because she looked a bit different. 

Nora: Cause she's perfect. And you love her. And you want to wrap her up in a little blanket of comfort and no one will ever make fun of her, ever. That's unacceptable. 

Melissa: Absolutely. We wanted her to feel as perfect as she was. 

We’ll be right back.

And we’re back. Isla is perfect. And the doctor wants Melissa and Mark to stay chill; she’ll see Isla in a week and tell them in person just how perfect, how lovely their daughter really is. 

But Melissa is an oncology nurse. Sure, she’ll “chill out.” But she can only be so chill.

Melissa: So I kind of did some research, and I found that probably what was going on between her like, droopy eye and this pupil being dilated was that something was wrong with this nerve. So it could either be a brain tumor, aneurysm, or it could just be something she was born with, which would just mean she'd look a bit different, would have to have several surgeries. Her eye wouldn't work quite like normal. So that was best case scenario. We were really hoping for that. 

So we go to the doctor a week later. Our doctor says, “There's a percentage of the population who just has one pupil larger than the other.” So she said she was pretty certain that that's all it was. There wasn't really any need for us to be too concerned. And that she'd get us in with a specialist just to be sure, but that it might be about an eight-month wait. We left that doctor's appointment feeling reassured and we thought, you know, we trust our doctor. She says that it's nothing to be too concerned about. If she's willing to wait eight months, then like it's probably fine. So we go home and just think, “OK, well, we'll see a doctor in eight months, I guess.” But then progressively over the next week, I just became sicker and sicker over it. And like I think her eye was closing a bit more. But aside from that, it wasn't really changing. And Mark was like, “Well, it hasn't really changed.” It got to the point where I wasn't eating or anything because I was just so nervous. 

They’re really nervous. So they call the doctor again. The doctor gets them into a specialist. And less than 48 hours later, the specialist is assessing Isla, he does some tests and says...

Melissa: Yep, I think you're right that it's this nerve that's the problem. It could be viral. It could be congenital. So we thought, oh, good, he didn't say a tumor. So he sent us to the PEDS unit. So we took Isla there. She got admitted. And then from there, six hours later, they sent us to the, one of the large children's hospitals that's about an hour and a half away. So we were very nervous at that point because it kind of felt like it was turning into a big deal that they were sending us to the big hospital with her. 

While Melissa and Isla are transferred to the hospital in Calgary...Mark goes to bed, planning to stay at a nearby hotel the next day and see them via Facetime. COVID had already become a thing, so Mark wasn’t allowed to be there.. Trying to stay in the now as much as possible.

Isla is perfect. And beautiful. They do a biopsy. And she has a cancerous brain tumor.

The doctors give them a choice: Isla can undergo chemotherapy...or she can not. And even if Mark and Melissa decide to have Isla go through with chemo, the doctor tells them that Isla only has a 1-2% chance of survival.

Melissa is an Oncology nurse.

Mark has lost his mother, his first wife. And now, he could lose his daughter.

Isla is ten  weeks old. She’s blind. She’s in pain. She’s had a stroke. She’s having seizures.

Mark: I think we both assumed that we would try the chemo. It was supposed to be incredibly harsh chemo — like, harvesting and things that they have to do for it.

Melissa: Basically like the chemo that she would have been getting was like not compatible with life. So it would kill her. So then they'd have to give her stem cell transplants as she was getting chemo so that she didn't die just from the chemo. So it was really intense. 

Mark: Right. At the time that we had to make the decision, we were aware that what she had was really bad and... like the chemo could potentially prolong her life. But for me, the decision was easier in that I just wanted to get her home. She hadn't met anyone at that point. We could keep her in the hospital for a while and try chemo, and she could potentially die in the hospital, having not met anyone. Or we could bring her home and just give her as much love as we possibly could give her and introduce her to people, like friends and family that just love her and just spend that time just like fully immersed in Isla. And just like just loving on her and being with her and holding her and kissing her and doing all those things. 

This is a horrible, wrenching decision. And a simple one. 

Mark: I didn't want her to be... just like a picture on a screen for all these people that she'd never met and would never meet and her funeral would have been full of just people that had never even met her. Like, I just wanted her to be with people and be loved by people and not just be in a hospital and suffering because of this stuff that they're putting into her.

For the third time in his life, Mark becomes a caregiver. This time, for his little, tiny baby girl. Mark and Melissa take Isla home to live the life she has left inside of her. 

Melissa: We did weekly birthday parties. So she had cupcakes and party hats, and those two weeks were packed full of visitors. So we had a list of like, our closest friends and family. And we schedule them all in so that they'd all have a chance to meet Isla. And they were weird meetings, because they're meeting our daughter for the first time and we're so excited for them to meet Isla and we're just like so in love with Isla and we're obsessed with her and we think she's the most amazing thing ever. So we're so excited for them to meet her. But at the same time, people were meeting her and they were saying goodbye to her at their first meeting, for the most part, like we were kind of assuming most people probably wouldn't get to meet her again. We were hoping they would.

My parents have a cabin an hour away, so we packed up all of her medical stuff and we took her out there, and she did so well out there, she needed less pain medication than she did at any other time. She was like, so happy, and she slept most of the time, but especially at the lake she had some moments where she was very awake and very, very clearly happy and enjoying herself. So even though those two weeks were like, so devastating and we knew that she was dying, they were also like full of a lot of really happy times. But even the really happy times were painful because like, I know for myself, I would have moments where I would think, like, “Oh, my gosh, we're so lucky. Like, how do we get to be her parents? And, like, we're so lucky to be at home with her.” But then like the next second, you're thinking okay but she's dying. So like, it's pretty soon like these all could be lasts. So they were like super happy times, but also like insanely devastating times.

Isla died on June 19th, 2020. She was 13 weeks old. 

Melissa: When we were debating having kids, if somebody had told us, like, go ahead and have kids. But like your first child, she's going to get brain cancer when she's seven weeks old and then she's gonna die. Like, I don't think we would have been able to go through with it. 

Mark: We definitely would not have. 

Melissa: And looking back, like there's just no way we would take any of our moments back with her. Of course I wish she didn't suffer. That was the most horrifying thing ever to watch her suffer. But she brought us so much joy even during like, the most terrible times, and we never would have... not wanted to have her in our life. 

Nora: Mark, what does it do to a person to live through your worst case scenarios? 

Mark: It doesn't help me mentally to think that all these things have happened. [laughs]

Nora: “Nora it's not great. OK. I'll tell you that much.”

Mark: It’s not something I like thinking about. Melissa and I actually have different nights where either one of us is like awake in bed, the other one is sleeping. But one of us is awake and we're just sitting there thinking I definitely have cancer right now. Like, there's something going on. And like, just stewing on that. Like just thinking about that all night and thinking in the morning, like “I have to make a doctor's appointment” or whatever. And then morning comes and it's OK. But like. I don't know. Nighttime is just so scary. A lot of the time. It is such a weird place to be thinking, like... like, I never would have had her had I known what was gonna happen to her before I met her.

Nora: I noticed Melissa you described Isla as your first child. 

Melissa: I think fairly early on after Isla passed away, we knew that it wasn't going to fix Isla and wasn't going to bring her back. But... the thought of having siblings for Isla and being able to, like, teach them about Isla and show them pictures of Isla and like… we do hope that we'll be able to have healthy siblings for Isla in the future, and that they'll get to learn about Isla. And we hope that it will be a different experience. And we're not going to say it's not going to be because, you know, we did that before. We said that we weren't going to have a sick child. And this is what happens. But it's worth it feels worth the risk to us right now. And if we have more kids, we're going to be insane helicopter parents. And we thought we were paranoid before. And oh, my gosh, like, I feel terrible for any of our doctors or anything in the future, because I don't know how I'm not gonna be a crazy helicopter parent. 

Nora: You will be. And I will be right here hovering with you. What is that sound? It's us. OK.

Melissa: And hopefully people will just put up with it. But, like, that's the only thing giving us a little bit of hope right now for having joy again in the future. Not for fixing Isla because nothing's going to fix Isla. Just like me coming along doesn't fix Karen and nothing fixes Mark's mom. It's just like... that stuff is all sad and like, you know, I'm gonna miss Isla always and Mark's going to miss Isla and Karen and his mom, but just like the thought of more kids, it's like maybe we'll be able to be have some happy moments again in the future, because right now it's just... it's there's not many happy moments right now. 

Nora: Right now it sucks. 

Melissa: Yeah. 

There’s a passage in Harold S. Kushner’s book When Bad Things Happen to Good People where he talks about the laws of the universe and the perfect rhythm of our human bodies… how all of this is happening without us noticing. We eat, and the food nourishes us, helps us grow. Our kidneys and liver are just cleaning up after us, keeping us going. 

And I’m going to quote him here, “The unchanging character of these laws, which makes medicine and astronomy possible, also causes problems. Gravity makes objects fall. Sometimes they fall on people and hurt them. Sometimes gravity makes people fall off mountains and out of windows. Sometimes gravity makes people slip on ice or sink under water. We could not live without gravity, but that means we have to live with the dangers it causes.”

I underlined this passage twice, and I thought of Mark. Of Karen. Of Melissa. And Isla and all of us.

We cannot live without love, and here we all are, living with the dangers it causes, with the promise that this will nourish us and nurture us, and will also break our hearts. But it’s worth the risk.

This has been “Terrible, Thanks for Asking.” This podcast is, um… I mean thanks for sticking with us. Sometimes we break your hearts. This podcast is a lot like love. Sometimes it’s fine. Sometimes it’s like what the F happened. This is one of those episodes. It was hard. This was an emotional one.

I’m Nora McInerny. I am on this podcast. I’m here. Nora McInerny, present. Production team is Marcel Malekebu, Jeyca Maldonado-Medina, Hannah Meacock Ross, Jordan Turgeon, Phyllis Fletcher — we love her. 

Our theme music is by Geoffrey Lamar Wilson. We suggest you go buy his albums. GeofreyLamarWilson.com. We are a production of American Public Media.

And that is all for now. If you like this podcast, tell a friend. If you don’t like this podcast, obviously tell more friends, okay? What is wrong with me? Everything is wrong with me. We will see you next week.