Dr. Denise Millstine is joined by author Allison Ashley and hematologist Dr. Jeanne Palmer to explore the emotional and medical journey of leukemia treatment and stem cell transplantation through the lens of Allison’s romance novel IF TOMORROW NEVER COMES The conversation touches on the steps of bone marrow and stem cell blood donation, the anxiety and worry following transplant, and the power of human connection.
Dr. Denise Millstine is joined by author Allison Ashley and hematologist Dr. Jeanne Palmer to explore the emotional and medical journey of leukemia treatment and stem cell transplantation through the lens of Allison’s romance novel IF TOMORROW NEVER COMES The conversation touches on the steps of bone marrow and stem cell blood donation, the anxiety and worry following transplant, and the power of human connection.
This episode was made possible by the generous support of Ken Stevens.
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“If Tomorrow Never Comes” Transcript
“If Tomorrow Never Comes” by Allison Ashley
Speaker 1 – Dr. Denise Millstine
Speaker 2 – Allison Ashley
Speaker 3 – Dr. Jeanne Palmer
Characters
Elliott
Jamie
Carly (donor)
Hank
Dr. Denise Millstine
Welcome to the “Read. Talk. Grow.” podcast, where we explore health topics through books. Our topic is stem cell transplant and treatment for leukemia through the book “If Tomorrow Never Comes” By Allison Ashley. I'm your host, Dr. Denise Millstine. I'm an assistant professor of medicine at Mayo Clinic, where I practice women's health, internal medicine, and integrative medicine.
Our author guest is Allison Ashley. She is a science geek who enjoys coffee, craft beer, baking, and love stories. When Allison is not working at her day job as a clinical oncology pharmacist, she pens contemporary romances, usually with a medical twist. She lives in Oklahoma with her family and beloved rescue dog. Allison, welcome to the show.
Allison Ashley
Thank you so much for having me.
Dr. Denise Millstine
It's great to have you here. Our expert guest is Dr. Jeanne Palmer, who's the vice chair and section chief for hematology at Mayo Clinic in Arizona, where she's also the program director for the Bone and Marrow Transplant Program. Jeanne, welcome to the show.
Dr. Jeanne Palmer
Thank you for having me. Sorry, I didn't include other details. You had such a nice introduction, Allison. And mine was really boring.
Dr. Denise Millstine
It's how the professionals do it. We often get rid of those extra details that are so interesting, not boring at all, as we'll learn as we go through the episode. On “Read. Talk. Grow.” we discuss books that portray health topics in an effort to better understand health experience through story. In this case, we'll talk about stem cell transplant and leukemia. Allison, what inspired you to write this book?
Allison Ashley
So, you know, my day job working in oncology. I think is just a space that I have lived and breathed for so long. And since I started writing romance, sort of as a side gig, I'm always kind of thinking of unique medical situations that folks could find themselves in, or sort of general ethical conundrums that could come up, that could, you know, create a challenge for somebody maybe trying to navigate their romantic life while also dealing with life's challenges that it kind of throws at you whether you want it to or not.
And so and I actually practice in solid tumor, so stem cell transplant BMT I hadn't done since residency. But one day I just kind of thought, what on earth would somebody do if they had a stem cell transplant and somehow, through some fateful event, really felt like the partner of the donor was maybe their person. Like what ethical situations would come from there when you know, this person saved your life, but you think maybe the person they're with might actually be your person. And just how would that challenge unfold?
Dr. Denise Millstine
Starting to think maybe you have a mean streak because poor Elliott, as we will learn. But it does make for a very interesting novel. So thank you.
Jeanne, tell our listeners what it's like to be a practicing hematologist who focuses on transplant and also your reaction to the book.
Dr. Jeanne Palmer
First of all, my reaction to the book is I was really glad it deleted that first year of post-transplant, because that would have been a really hard one to convey. So I think having the main character meet her person prior to the transplant and then resetting at one year, it was a really nice way to do that. It also allowed for some focus on survivorship issues, which I think are also a really important thing to highlight for these patients.
So in terms of being a hematologist, I have to say, you know, I always think the worst. And so and when I read through different things like this, I'm always like, okay, well what's going to happen here and what's this happening. And then sometimes I get a little too technical in the way I think about it, which is also not helpful. But I really did enjoy reading about her story and understanding kind of her journey. And I think it really did highlight a number of the things that post-transplant survivors experience that I see from the clinical perspective where I'm taking care of them, and sometimes they don't actually get to that personal perspective of them trying to navigate their life after a transplant.
Dr. Denise Millstine
Yeah, it's a really important time. And especially you've seen these patients from the decision that this is the next therapeutic step, through the transplant itself, through the immediate post care and then everything that can happen following that.
So Allison, like Jeanne just mentioned, we meet Elliott as she embarks on a night of fun. It's the night before she's going to be admitted to the hospital for intense chemotherapy and then receiving her transplant. Of course, this is where she meets Jamie, who's the love interest in the book for the first time. So as an oncology pharmacist, you have an accurate idea and a front row seat to what this chemotherapy was really about to be like for Elliott and what the process of the transplant was really going to be like for Elliott.
Can you help our listeners who maybe don't know that as well, understand why she was so intent on making this a great night where she felt normal and out and was trying really hard not to be so forward, focused on what was about to happen.
Allison Ashley
Sure. Well, before I touch on that, I will say it was super important to me, kind of what Dr. Palmer just said about, you know, she meets Jamie before. It was important to meet a set up from the romance angle of the book that they met and had a connection while they were both single and before the transplant.
And so then post-transplant, there's just this twist of fate, and this is all, you know, on the back cover copy. It's no spoiler or anything. You know, if you kind of read what the book is about, you'll know that later she's faced with this, oh my gosh, this was this guy that I kind of had love at first sight with, and now he's with the person who saved my life. So it was really important to me to kind of form that connection early and right off the bat.
And certainly Dr. Palmer can correct me if I say anything outdated here because, again, I haven't done BMT hematology a long time. But in order to be able to replace someone's bone marrow or stem cells with a donated set of healthy cells, which this is kind of the process to help cure them of leukemia, you really kind of just have to obliterate or wipe out what is in their bone marrow right now. And to do that, it takes multiple days of very high dose chemotherapy.
So more than we would give to somebody with another type of tumor. So way more than what I gave to my colon cancer patients or lung cancer patients. And the immediate effects after that type of chemotherapy can be really hard on a person. There are some side effects from that high dose of chemo that can be fatal pretty quickly. There's others that linger. These patients can have infections after. They can have trouble eating.
And then additionally, immediately after, we have to wait until the new stem cells that we've just infused in. So this is what the donor gives. We have to wait for them to kind of start working, if you will. And so there's this phase of waiting and hoping that they do what they're supposed to do, and giving a lot of medications that can have their own side effects.
And that's where kind of my pharmacy side comes in, allogeneic, which is the term for somebody else donating the stem cells, transplants. Can they have a lot of risks associated with them. And so the chemo itself can be fatal. Things that the new stem cells do can be fatal. There's just a lot of risks associated with it. So I think any time somebody is going through that process, informed consent is critical. And so she's aware of the risks and she just really understands that this could go badly, but also that this is her chance of maybe having a long term cure.
Dr. Denise Millstine
Jeanne, do you want to slow down some of those terms? Because we've heard stem cell transplant. We've heard BMT, which is bone marrow transplant. Do you mind just distinguishing those for listeners who don't operate in this world?
Dr. Jeanne Palmer
Absolutely. That's a great question and one I get all the time. So when we talk about a stem cell transplant, bone marrow transplant, etc., basically what we're referring to is collecting the cells that make up the whole blood system that normally live in the bone marrow, collecting those from the donor and then infusing them into a new person.
And so the reason we say bone marrow transplant versus peripheral blood stem cell transplant or just stem cell transplant is that we used to actually go in and collect these products literally in an operating room with a needle where you pull out portions of the liquid marrow. And that was the bone marrow that we would be collecting, essentially, kind of, you know, what you would see in the middle of a bone of a T-bone or something that you're eating.
Now, what we've done probably over the last 25 years, is we actually use a process of donation where the donor gets injections in their arm, and these injections cause those stem cells that normally are stuck in the bone marrow to pop off and come out into the peripheral blood. And when they're out in the peripheral blood, you can collect them pretty easily. Where you take out from one arm, you spin around everything that you get. You take out the white blood cells, which will have the stem cells in it, and you put the rest of the blood back in the other arm. And that's the process of a peripheral blood stem cell collection.
We use that more commonly for a number of different reasons. There are still occasions where we will use, bone marrow product and that the donor has to go through a bone marrow harvest, which is what we call we bring them to the organ and extract the bone marrow.
But those are the different ways. So it's very confusing. People are like, well, is this a is this a peripheral blood stem cell transplant? What is it? All of this reflects getting those stem cells out of the bone marrow in one way, shape or form, collecting them, putting them in a bag that looks literally just like a bag of donated blood and infusing them into the recipient, whose the patient who's getting the stem cell transplant for leukemia or whatever other indication it may be.
Dr. Denise Millstine
Well, and, Allison, you had Elliott, who's the main character, meet Carly, who's the donor, and she is so thankful because truly has her life back, has her health back because of what she's been through, because Carly had signed up to be a donor. And what she says, what Carly says to Elliott is, it's so weird. I don't feel like I did anything. It was pretty simple on my end. It was almost like giving blood.
And I think that's what we're hearing, Jeanne, describe. Because in the past, where harvesting the bone marrow could be a very painful and challenging procedure for the donor to go through. Now it is a process to go through, but it all happens through effectively intravenous catheters or IVs sticks that aren't as uncomfortable, as painful as I guess, big a deal, at least from a procedural standpoint. I don't know which one of you wants to comment on how important it is that Carly was in the registry.
Dr. Jeanne Palmer
So I think, first of all, people signing up for the registry is incredibly important because. donors have to be somebody who has some degree of compatibility with the recipient. And so what we do is, we match is based on human leukocyte antigen or HLA.
And we have pretty much five that we look at. You have a second set, cause you get one from mom and one from dad. And generally speaking we often try to match all of them. Now one of them’s probably not that important, so there's really eight that are important and we try to match that. Now having Carly live in the same city I thought was pretty amazing because, you know, your chances of your neighbor matching you were like 1 in 1,000,000 because there's so much variety in these HLA types. And that highlights the importance of having people sign up for that registry. Because of the fact that everyone is a little bit different and if you trace it back historically, you never know what type of HLA marker ends up in your DNA.
If you are of northern European ancestry, your chances of finding an unrelated donor are probably about 70 to 80%. If you're African American, it drops down to 50 to 60% as well as for Latin American. And then if you're something like Pacific Islander, then you're down to probably 30 to 40%. So it can really vary depending on somebody's background.
Now that being said, historically we used to try to use match siblings. So many people have the concept of if I don't have a match in my family or I don't have a sibling or I'm adopted, I don't have anyone. And that, fortunately, is a falsehood. So even if you don't have a sibling or you don't have family members who are alive, then you still have this option of finding a donor.
More importantly, even having a cousin or somebody is not somebody that we generally would look for because they're going to be so far removed that the likelihood of their HLA matching is low.
But the good news is, now we can actually use half matched donors. So we can use if you are a child and you have a parent, the parent can serve as a donor. And for parents, if you have a child, they can serve as a donor. So now virtually everybody has a donor out there. And we're now starting to understand that we don't need to match the 8 out of 8 or 10 out of 10. Now we can match as little as maybe 8 out of 10 or 7 out of 8 or even 6 out of 8, and possibly even lower and be able to perform the transplant safely, which really makes it that almost everyone now has a donor, which is just wonderful.
Dr. Denise Millstine
But the registry is still important, so people should absolutely still sign up.
Dr. Jeanne Palmer
The registry is still extremely important because we are learning that depending on the disease type, there are certainly optimal donors and less optimal donors.
Allison Ashley
On the subject of, you know, the registry, I actually had a reviewer leave. You know, I'm one of those authors. I look at my reviews, I know I shouldn't. Sometimes it's a mistake, but I especially if I'm having a bad day, I do kind of filter and look at the good ones just so I can see where is this book, you know, kind of finding the right readers or, bringing people joy.
And there was one reviewer who said, after finishing this book, my partner and I just went and signed up for the registry, and I just felt like that was one of the best things that I could have ever heard. It was probably the nicest review I've ever seen, that this silly little romance book that is not silly at all, but many times is kind of a genre that can be sometimes put in a certain box could lead to something so wonderful. That was really special for me.
Dr. Denise Millstine
You’re changing lives. We talked to Abby Jimenez on episode 10 about her book, “Yours Truly,” and she shared with us that a reviewer said she was signing up to be a kidney donor because of how powerful she found the transplant story in that book. So romance novels absolutely have power, and they promise us that they're all going to wrap up with a happily ever after, whatever that means at the end, so they can go to some pretty dark places, which I think is pretty unique to the genre.
Okay, Jeanne, I want to bring us back to the story. So we meet Elliott, like we said, she's about to go through her transplant, and then the very next time we see her, she is moving back to Omaha because she wants to be closer to the hospital and she's really ready to leave living with her parents.
She's been through this amazing journey and so she is about to interface with her donor. And then, of course, the man she met and had love at first sight with. Can you talk a bit about how surprised she might have been that she got through that year. Because she does comment on her fear that the transfer is not going to work, or that she might die at the beginning of the book, and then how important it is to be 100 days passed and one year passed.
Dr. Jeanne Palmer
When somebody goes into transplant, it's always a really hard conversation, because frankly, people can die from just the transplant itself. There's always the risk the disease can come back, but they can also die from what we do to them, from the chemotherapy, sometimes we have to give radiation therapy. There can be lots of toxicities.
So first they spend the first 3 to 4 weeks under very, very close observation by their transplant center. And some places, it's inside the hospital. In some places, it's a day hospital where they come in every day and get evaluated.
Once they get past that recovery period, they have a good number of red blood cells, white blood cells, platelets, all the things that are absolutely necessary to continue on with life.
Once they have recovered that, then they leave the hospital, but they have to stay within 30 to 60 minutes, depending on the center of the transplant center for up to day 100.
Day 100 is the day where you don't need certain things. So, for example, after a transplant, you need to live close to the transplant center and you need a 24/7 caregiver. So somebody needs to be with you all the time. This is one of the most important things about transplant. You can't go without it.
And so that first hundred days is pretty intense because you're coming into the transplant center 2 to 3 times a week. You're getting infusions. You're getting blood work all the time. You're in this incredibly well protected environment.
Now from day 100 to 1 year is kind of iffy. There's still a lot of complications that can happen. It's not like people get out of day 100 and they're like footloose and fancy free and ready to go. You know, there's a lot of things that can still happen in that time, but during that time, they don't need the 24/7 caregiver. They're still being monitored, probably at least monthly, sometimes more frequently, depending on the situation.
But then that year mark is a pretty important one, because we know that many of the complications, and I would say the majority of the really bad ones will happen within that first year. That's also the time frame when I tell people they can loosen up their diets. I tell them they can go back to work. They don't have to wear a mask all the time. So there are some things that we kind of let up a little bit.
That first year is fairly intense, which I think for the purposes especially of this story, was probably good to kind of go over because of the fact that the meat of the story is a lot between the inner relationship between these people, rather than focusing on what this woman went through with her transplant.
Allison Ashley
Well, that's funny, my editors, early on in some of my early books, the editors kept saying, I need you to tone back a little bit on some of the medical stuff. So as I've gone on, I've, you know, really focused more and you know, I write these because I love the love story. But yes, I this book took many revisions and a couple of the revisions, I actually did have a chapter or two exploring what it might be like to be in the hospital room, or being back at home, but really not being able to be out and with her friends or do anything. But those didn't make the final cut.
I think, you know, just kind of trying to think about the overall goal of this book and kind of just a little bit more exploring her finding love and the ethical conundrum that she's presented with. You're absolutely right. I kind of was told, hey, let's not let the really deep medical stuff take a backseat here.
Dr. Jeanne Palmer
Yeah, but I can see they got one year. A lot of people do start to really get back into life and start to feel like, okay, maybe I can do some stuff now. I can go on a vacation and then in her case, obviously trying to get a job and try to start her own business and stuff.
Dr. Denise Millstine
Hey listeners, we hope you're enjoying this episode of “Read. Talk. Grow.” If you find our discussions helpful and insightful, please take a moment to subscribe to and rate “Read. Talk. Grow.” on your preferred podcast platform and don't forget to tell your friends to listen. Your support will help us reach more readers and those eager to learn about health through books. As always, feel free to drop us a line at readtalkgrow@mayo.edu with suggestions for books, topics or any comments. Thanks for listening.
Dr. Denise Millstine
Well, and it sounds like because when she meets Jamie in the very first part of the book, she tells him the wrong name. She gives him her middle name. She doesn't tell him what she's about to undergo, because she was so worried that she really didn't know what was going to happen and from what you've just described, it sounds like that was really realistic on her part.
The most likelihood, the strongest percentage was that she was going to come through at the other end. But there are a lot of iffy moments, and you have to enter into that with an element of recognizing, especially as a young person, that a mortality, meaning you could die during this procedure of 10 to 15% is still much higher than somebody who doesn't have leukemia or hasn't had leukemia before of course.
Dr. Jeanne Palmer
Yeah. And probably she's actually gotten used to not talking about it, because I think that's one of the real big challenges of young adult or adult young adolescent patients with leukemia is I mean, if you go to somebody who you don't know that well and be like, oh, I had leukemia, the person is going to shut down because they don't want to think of what they don't want to think about what that means. And like, what if they had leukemia? What if their best friend had leukemia?
I mean, it's that's one of the hardest things about being an oncologist is all of a sudden having to see all these people who are my contemporaries going through these horrific things and thinking, gosh, that could easily be me.
So I think a lot of times they really isolate themselves to some degree with that because of the fact that it's such a hard thing to bring up in conversation because of the way people react to you. I mean, they probably processed it and gone through their head and stuff. But then when you say it to somebody, it's like, you get this look or like, or oh my god, or pity or some type of emotion that is probably a lot harder to handle.
Allison Ashley
That is kind of illustrated with Elliott, both with her friendship that she really just kind of has one primary friend that she met in the pediatric cancer ward many, many years ago. That they connected through this in a way that nobody else could and is, you know, she kind of makes a comment that really nobody else could really understand what she'd gone through.
And then also, you know, it's very clear that Elliott has had very little interaction with meant to so little experience. And so, you know, really falling in love with Jamie is kind of the first time she has ever experienced that in her life, in her late 20s. Because having, you know, leukemia and relapse and going through, you know, I really kind of don't comment on her specific type of leukemia, but typically there's multi-year treatment regimens that she'd had as a teenager and young adult.
So, yeah, she is somebody who that isolation that has kind of just almost been forced upon her is kind of clear in her limited circle, very loyal and incredible circle of loved ones, but a pretty small one. And her kind of embarking on this journey with Jamie is the first time she's ever done anything like that.
Dr. Jeanne Palmer
Yeah. And I think you brought up a really important point because she had leukemia and she's 17. And then probably if I'm kind of making a wild guess of what type of leukemia she had, she probably needed treatment for a few years. And typically those patients don't necessarily require a transplant in first remission. And then she sounds like she had a few years of remission where she was in remission and getting back to life, and then it hit her again.
So that type of thing I think is incredibly terrifying for patients, because not only do they go through it once, but they actually started to get their life back. And it's sort of like it's like a dropkick. And I've had that happen to patients. I've treated it where like, we get to a year out and we're 30 year out and they're like, things are good.
And I do their one year bone marrow biopsy. And it's not. That's always hanging over their head if it's not hanging over their head. I haven't done my job correctly. But it is. It is really challenging.
Allison Ashley
That constant thinking about it is also something I kind of tried to build in. The types of cancers that I treated were very different, but it's a similar concept of if you reach a cure kind of you mentioned, you know, survivorship is kind of the term for it is I'm not sure that anybody ever truly kind of takes this thought process of I'm 100% always free from this.
I can imagine I have not experienced cancer myself, but I have walked beside many people and just been in clinic rooms, and I just can't imagine that I would ever fully let that fear of it coming back, go. And I kind of tried to illustrate that just will always be a little bit of a burden she's going to carry, and maybe the decision to live life a certain way, despite that burden always being there.
Dr. Denise Millstine
I feel like we see a really important angle with Elliott when she meets this new group of friends. You mentioned that she has this one really deep friend in that she's new to dating, but also she meets this lovely group which includes Carly, her donor, and one of the friends says, you don't look like a cancer patient, which I think is what you're both talking about. As you get to this point, you've got all of this going on internally, but on the outside, she looks like a very healthy 27-year-old girl because she had young cancer starting her life in a little bit of a delay. I guess that's a common trajectory that you both see.
Dr. Jeanne Palmer
Yeah, I mean, especially for somebody like her. I mean, a lot of the patients, at least that I see, fortunately, are older and have had that life. But I think having leukemia or having a serious illness at that age is tough. Those are some of the hardest patients to deal with. But interestingly, sometimes the most mature patients, the ones who get it like 18, 19, 20.
Sometimes I think anxiety and depression are much worse after one year or after two years. I see a lot of that because of people reconciling the whole thing that they went through. And then on top of it, knowing that they have to figure out how to adjust to life, going back into regular life, recognizing that this is always going to be in the back of their head, and that's something that I think is incredibly hard to do.
And then they'll hear about somebody dying. I think in this book she heard about somebody she knew from her first pediatric treatment for leukemia, who died. And like, there's this survivor's guilt. I mean, there's an extreme survivor's guilt. Patients talk to me about that all the time of, like, why am I one of the ones who gets to live?
So it's an extremely complex emotion that I can't begin to understand. And honestly, to maintain sanity. I can't think too much empathic like about what exactly they're going through, or else I wouldn't be able to get through my day of seeing multiple of these patients in a row, but it is something that was very nicely highlighted in the midst of of a nice romance story, which I really enjoyed. It's the acknowledgment of that. And I think at one point, like she went to a survivor support group.
Allison Ashley
Yeah.
Dr. Jeanne Palmer
Which was good.
Allison Ashley
No, I appreciate that. That's something that you know, I really take seriously, trying to illustrate some of the things that don't seem so just maybe obvious or highlight some of the things that I watched patients go through. And you know, she does specifically comment where this is the first time she's living by herself and how scary it is that when she's in the hospital, she, like the nurses, would know something was wrong before she did.
Like they would see it on a monitor. And then at least when she was at home during that first year, you know, when you need somebody with you, she would just call out and her parents would be there. And that's one of the ways that she and Jamie eventually kind of a reconnecting where he's one of the first people that she admits to, how hard it's been and how anxious she gets in that room all by herself or her apartment all by herself. And he very kindly says, well, I'm very close. If you ever, ever are worried, I can be there in a minute.
Some of those anxieties I use a little bit as a tool for the romance, but it certainly, they're certainly very realistic. I'm glad that there's somebody who still sees it every day that it hit the mark.
Dr. Denise Millstine
I mean, I'm really hoping that people who are listening to this episode and people who have read the book will now think to themselves when they've known somebody who's gone through a transplant, not only is it really important when they're in the hospital, and not only is the 100 days, but what you've just so nicely highlighted, Jeanne. Is that that moment when and I think this is true as well, Allison, for solid tumor, when you've been so intensely held by your care team and then you're doing well and so they have moved on to the next person who needs their intense care. And you almost feel this sort of floor drop out from underneath you.
And that is a great time for people, who love you to show up, to come with the cookies, come with the flowers, come with whatever it is that you know this person you care about might be needing to brighten their day because they're needing to know that they're still surrounded.
And Allison, one of the elements of support that Elliott receives from Jamie is Hank the dog. So there's a moment where she is thinking about some testing that she'd had done, and she knows she has an appointment to review her results. She'd been watching Jamie's dog, who is just a wonderful character, hopefully inspired by your dog. And he realizes, you know, maybe Hank needs to stay with you for a couple more nights until you can get to that point.
Can you talk about animals and how they support us and how important that is?
Allison Ashley
I am certainly a dog lover. I have always had rescue dogs and always well, actually, one of the guiding physicians at my cancer center, she at all times has 3 or 4 rescue dogs that she's trying to adopt out. So I think has the cancer center has a dog of hers. So we all adore dogs.
And I for me, they are such an emotional support. And no, they're not like somebody who can call 911 if you need it, but they just provide that emotional sort of just solid rock of giving a little bit of relaxation, giving a little bit of a steady presence and something that's there. And so I think Jamie letting Hank stay, I loved that scene. That was one of my favorite.
Hank, really, he's a little bit of an instigator, too. He kind of brings them together a lot. I did not shy away from using the dog as much as I needed to, but he's sort of a light hearted presence, too, because there can be some heavy topics in the book, and I think he brings a little bit of a lighter part of it, but I just, I don't know, I feel like everybody has something different that they might need to find that peace and to be able to take it day by day.
And Jamie, as he been getting to know Elliott and kind of observing her, really kind of aptly noticed that Hank had been that for her and that she was in a moment where he didn't need Hank for that reason, and that she could really benefit from having that comforting presence more than he needed for the next couple of days. So it was both giving her that and also illustrating just Jamie really falling for her and anticipating her needs a little bit. Which kind of goes back to what you talk about is the importance of that support system really being very sensitive to what the folks in that situation may need in that moment.
Dr. Denise Millstine
There's another point, Jeanne, in her survivorship journey, where she's had some testing done, and she receives a call directly from her oncologist, not from one of his team members, which she was accustomed to receiving when she was getting the all clear, here's when we check next. Is that something that really happens that when the doctor calls, it's a more serious conversation or how does that usually happen?
Dr. Jeanne Palmer
That's a tricky one. That's one I still struggle with and I've been doing this for 20 years of like, when do I call? When do I not call? Usually, I mean, frankly, quite often when the doctor calls it, it's bad news. I have had a couple of situations where I'm absolutely so pleasantly surprised by the news that I call the patient, because I'm so excited and it made my day, and I know it's going to make their day ten times more.
I worked with a nurse practitioner once and she's like, well, if I call, you know, everything's okay. And if Dr. Palmer calls, then you have to worry. And of course, I was really happy at the results the patient got. So I went to call her with the results and right after the nurse practitioner called her. And so she started panicking. She's like, I feel like, no, no, no, I this is good news. She's like, but I just talked to. So I was like, oh, I didn't realize she called you. I said I just was happy and wanted to let you know the good news. You know, it is hard.
The portals made that a little bit easier because then you can kind of give information and let the person process it on their own time, rather than having to call somebody, because, I mean, you say something and if it's at all scary or bad, they shut out the next five minutes of your whatever's coming out of your mouth. And so I think that the portal has made that easier.
Dr. Denise Millstine
Well, I guess what I'm thinking, as I'm hearing you talk, is that we're so grateful to you both for doing the challenging work that you do, and for working with patients that are in such really difficult times of their life. And so, of course, you're going to be there with your compassionate heart to call when things need to be discussed or there is bad news. But you should also celebrate when something comes back and is surprisingly, pleasantly not bad news. So I'm glad you get to make some of those phone calls too.
Okay, as we wrap up, will both of you give some advice to our listeners who are about to go through a bone marrow transplant or they care about somebody. What is something that you want them to take away to know about this journey?
Allison Ashley
Mine might be, for better or for worse, I think, in my romance author persona. And yes, I, you know, work in oncology, but I think for the purposes of this and that persona, I do want to on the side of hope and the potential for happy endings. And so I think mine would be definitely take it one day at a time. Which is something that, especially in the early, early days, I know again, I did it in residency.
It's been a while, but even when I managed patients doing solid tumor treatment, when it was kind of a really tough time, so similar to maybe the first hundred days when I would have patients getting, you know, cisplatin and radiation, which is just a chemotherapy radiation treatment for head and neck cancer. The treatment phase can be just horrendous. The patients are in a lot of pain. They don't want to eat, they can't talk depending on their situation and the doses they're getting. But it can be horrible. And my advice in seeing those patients every week was just take it one day at a time. It will get better. On the other side, you'll be able to look back and say, I made it through that.
And so I think, as Dr. Palmer said, that's not a guarantee for every patient. And we always want patients to go into things with their eyes wide open to the benefits and risks. But chances are you'll come out on the other side and just during those, those tough days, just take it one day, one hour, one minute at a time and lean on those that love you and just look forward to that other side of it.
Dr. Jeanne Palmer
I had a patient once who went through bone marrow transplant, a year later relapsed. I remember talking to her and I was like, you know, she's a young woman. I said, how are you doing with all this? And she said, you know, I just have to believe I'm one of the people who's going to be that make it through.
And I was like, that's a great thing to say. And I tell that to my patients. I said, look, I'm telling you horrible stuff right now. And that's my job. I have to do that. I said, but once we get you in the hospital, we are moving forward like you are going to be one of the ones who gets through this.
There's a couple other things. Number one, remember, this is a marathon. It's not a sprint. And so I always tell people, you know, for a marathon you can't think about mile 18 when you're in mile 5. Because you'll completely psych yourself out and not be able to do it. So reminding people to stay in the moment.
And then another thing is talk about stuff that's not related to their health and not about how they're doing. I think some of the best conversations, and I try to have these with my patients, is just about other things in life and what they do and what they like. I this one patient, we talked about movies all the time, and I could always kind of gauge how she felt about how enthusiastically she talked about a movie or something that she had watched.
But I think having those normal conversations is incredibly helpful for patients to feel like a person rather than a patient, because pretty much all their social interactions are going to be, how do you feel? Are you having this symptom or are you having that symptom? Or are you having X, Y, or Z symptom? And so having regular conversations not about how they feel or what's going on with them medically, but just hey, look, did you watch this TV show or did you do that because the distraction piece is key. So I think a lot of it is just not letting your own fears about what you would feel like affecting.
I always found it funny. I deal with leukemia and bone marrow transplant and all these things that make people very sick, but the brain tumor people sat in the next office over from me, and that was their work room. And I'd always hear them talking about brain tumors. And even though I could hear anything about leukemia, I'd be fine. I'd hear about brain tumors, and I'd have panics. And, I mean, I'm an oncologist, like I should be able to handle that. So I imagine what it's like for somebody who doesn't have that context. It's always good to also be self-aware, because when somebody is sitting there and they're trying to read every micro expression of everybody to try to understand what's going on, they're going to read your micro expressions as well.
Allison Ashley
I love your the concept of letting them be a person outside of their illness, because so much of that probably they feel like having cancer, having it actively being treated and being a cancer survivor. So much of that makes up their identity. And I think it's person dependent, of course, and following their lead. But I think a lot of folks would probably like to be seen for the person they are, totally apart from that. So I really like that piece. Yeah.
Dr. Denise Millstine
A great phrase I read in a book once is when you have you know, somebody who's going through a journey like this is to say to them, “Do you want to talk about how you're doing?” So that you've at least acknowledged that you know, they're going through a hard time, but it gives them the out as no. And then in your back pocket, I like the idea of having a movie, a television show, or in my case, it would of course be a book.
So I want to thank you both for being here with me and talking about “If Tomorrow Never Comes.” I hope our listeners will go out and read the story, which is really wonderful. Thank you.
Allison Ashley
Thank you so much.
Dr. Jeanne Palmer
Yep. Thank you for having me.
Dr. Denise Millstine
“Read. Talk. Grow.”is a product of the Women's Health Center at Mayo Clinic. This episode was made possible by the generous support of Ken Stevens. Our producer is Lisa Speckhard Pasque and our recording engineer is Rick Andresen.
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