Amanda Lieb and Sharon Tewksbury-Bloom are unique in having both donated bone marrow to cancer patients twice. Amanda donated to a stranger who she was matched with through the national registry. Sharon donated to her sister and then the second time to a stranger through the registry. In this conversation they compare their experiences.
Mentioned in this episode:
00:03 Speaker 1: This is Do Good, Be Good, the show about helpful people and the challenges they face in trying to do good. Your host is Sharon Tewksbury-Bloom, a career do-gooder who also loves craft beer and a good hard tackle in rugby. Sharon speaks to everyday people about why they do good and what it means to be good.
00:24 Sharon Tewksbury-Bloom: Hi, everyone. I’m your host, Sharon Tewksbury-Bloom. Long-time listeners of this show will know that I donated my bone marrow in 2018 to a stranger through Be The Match. In fact, I promised to tell that story here on the podcast, I talked about it over a few different episodes, but I never actually did. That was over a year ago, and what you don’t know is that I tried. I recorded several times, where I tried to record my own story of what it was like to donate my bone marrow. The thing is, it turns out, it was really hard, both donating and thinking back and trying to tell that story. I would get really emotional. I would find it very difficult when I would sit down to record. So, I had to put it to the side and wait. But now you get to know at least part of my story, thanks to today’s guest, Amanda Leib.
01:28 ST: Amanda reached out to me after a reporter interviewed me about my story of donating in our local paper. Amanda is a doctor, and she works on the Navajo Nation just north of here. She reached out to me because she and I actually share a very unique experience. We have both donated twice. You’ll get to understand how and why during this episode. I will make a quick cautionary note. As I mention in the episode, I’m actually a fainter. I have fainted lots of times in my life, and at certain times, I was very prone to fainting any time I would listen to anything medical. So, from my own experience, let me tell you that today’s episode is going to include some medical talk. And if you are a fainter like me, if you have the Tewksbury curse, as we say, then do not listen to this episode while driving or operating heavy machinery. Please use caution. With that said, I hope you enjoy our conversation.
02:34 Amanda Leib: My family always said, “Oh, you know, she’s gonna be a doctor.” There was something about the way I related to people or what I was interested in or the way I cut chicken up. I don’t know what it was. But they always said, “She’s gonna be a doctor.” And in college, I kind of rebelled against that. People always thought that’s what I was gonna do, and I didn’t wanna be pushed into something that other people… That was someone else’s idea. So, after college, I did research for a couple of years. I was a lab tech in a research lab and thought about things, and then realized it was what I wanted to do. So then I applied to medical school, and the rest is the usual path.
03:19 ST: Was there a piece along the way where it was just completely different than you thought it was gonna be?
03:26 AL: Residency was really hard. I did my residency before they had the new laws where they limited things to 80 hours a week. And I always thought of myself as a very compassionate person, and it’s probably one of the reasons I wanted to go into medicine. And my hours were just so brutal in residency, like 120 hours a week. And most of the time I was in the hospital, there was no sleep involved, so you’re just so tired and beaten down. I didn’t think I was a very compassionate person. And I think, when I finished my residency, there was that feeling of, “Did I make a mistake going into this? This was not what I bargained for, and I’m not really very happy.” And then started work and remembered what I loved about it all, and it felt like the right thing.
04:19 ST: I asked Amanda how she ended up on the bone marrow registry.
04:23 AL: When I started in Tuba City… It wasn’t long after I started in Tuba City. They had a bone marrow drive at the hospital in the reservation because there was a child who needed a bone marrow, a Navajo child who needed a bone marrow donation, and there were very few Navajo or Native American donors in the registry. They didn’t have a match, and they were trying to expand the registry and find a match for this child. And so a lot of the people who worked at the hospital signed up. People who worked in the hospital that were non-Native also signed up for the registry. I don’t know what became of that child, and I had totally forgotten that I had ever signed up for this registry until about nine years later. I got a letter from the bone marrow registry saying that I was a preliminary match for somebody and would I be interested in going further into the process to find out if I could be a match, and was I interested in being a donor.
05:24 ST: I also signed up at a drive that was happening, in my case, at NAU. I did have personal history with it, but I hadn’t actually been on the registry because my personal history was donating when I was 2 years old. And I had just made an assumption that if you had done it once, you couldn’t do it again. And so I was always saying, “This is a great thing, other people should sign up for the registry.” I think I actually said that. I was so excited to see the table, and I went up to the woman who was recruiting, and I was like, “I’m so glad you’re doing this, and this was really important in my family’s life.” And she’s like, “Well, are you on the registry?” I was like, “I don’t think I’m allowed to be on the registry ’cause I’ve already donated.” She was like, “Oh, no, that’s not the case at all. You could definitely be on the registry and you can donate more than once, and it’s not a big deal.” So, I, too, I signed up and then didn’t hear anything for seven years, I think, in my case. But, yeah, I think you don’t generally get some form of ambiguous contact that’s like, “You might be a match possibly.” And you start on the…
06:25 AL: “Are you interested?” And then if you respond that you are, then you go through a less involved preliminary interview and then some more blood draw, and then very extensive interviews, and very extensive informed consent process. The informed consent process was hours long. I’m a physician and I do informed consent for people for surgeries all the time, and it’s not hours long.
06:56 ST: It was hours long in my case, too, and it felt like it happened three times hours long.
07:02 AL: Yeah.
07:03 ST: When you got that initial screening call or contact, did it immediately all come back as to what this was and you thought, “Oh, yeah, now it’s really happening and I’m ready to go.” Or were there any concerns that came up or questions?
07:19 AL: I wouldn’t say there were concerns or questions. You get the letter, and you’re like, “Why am I getting something from this bone marrow registry?” or whatever. And then the little light bulb goes on and you remember, “Oh, yeah, way back when I did this.” I was actually excited and happy to be able to go forward with the process and help. And there was actually somebody else from the hospital who matched for someone else and decided not to. And I thought that was really interesting, too. She was just at a different point in her life, and it didn’t feel right to her, but it just felt like, “Wow, this is great. I can do something for someone.”
07:56 ST: I know, after you go through some of those phone calls and some of the health history and that kind of screening part of it, then, like you said, you do all the blood tests and the informed consent, and you get a ton of information about what you’re about to go through and what’s involved and what the risks are. Being that you are and were a doctor, was there anything that surprised you? Did you feel like you already understood all of that?
08:24 AL: When I matched, what they wanted me… They gave me a choice, but what their preference was to be a stem cell donor rather than a bone marrow donor initially. And I guess that surprised me. Not dealing with this stuff as an obstetrician, I didn’t know that that was the state of the art or what the preference was. And that was pretty involved. It involved a lot of medications, and then they talk about the possible long-term risk of leukemia or other things, which I understood was probably pretty small. I think at some point you realize, “Hmm, this is not a risk-free procedure for me either.” And that was probably a little eye-opening.
09:08 ST: Yeah. I remember also being a little… It being a little eye opening. I’m probably on the absolute opposite end of the spectrum, which is that I faint really easily and so I never like to know the details of anything medical. And I had purposely skimmed the fine print but not read anything carefully. And then you get to a point where they really want you to know what this is entailing and so you cannot just avoid knowing. And I got to a point where I was like, “Oh, I finally really know what’s actually gonna happen.” And it is more involved than I thought. And there are more risks to me, or there’s going to be more impact to my health and my life than I might have anticipated.
09:50 AL: And then once I went through it, there was a definite impact and I don’t think I quite expected that. It’s funny, the thing that scared me the most with the peripheral stem cell donation was, they said, “Most of the time, we put in… Especially in women, smaller women, we put in a central line.” I don’t know why. But that, in particular, I was just so apprehensive about that. That was the thing I was the most nervous about. I don’t know why. We put in central lines all the time, and in the end, they put in the central line and it wasn’t as bad as I thought. But, for whatever reason, that was the scariest thing for me. There were probably other things I should have been more scared of, but that was it.
10:34 ST: Yeah. It’s funny because I’m saying this now and I’m like, “I’m gonna really make sure that I don’t faint in the process of interviewing you.” But I’ve gotten a little bit more accustomed to it from writing about it myself and just dealing with it. Yeah, I actually liken it… I’ve been writing about it lately, and I liken it to the fact that I got into mountaineering when I was a teenager. And I remember I ended up on this graduation trip to Mount Rainier.
11:04 AL: Oh, wow.
11:04 ST: And it was amazing and fantastic. But up until then, I had hiked on snowpack. But I had not done any actual mountaineering in which you rope up, and you’re going through crevasses and stuff. And we ended up in this summit hut at the top… Not at the top, but at the point at which you take off for the real summit. And we were gonna have an Alpine start at 4:00 AM and this whole thing. And they’re giving us avalanche beacons and helmets. And they’re doing the safety talk while we’re already up there at the summit hut. We’ve made it that far. And then the guides are like, “Here’s what to expect,” sort of their own informed consent proceeding. And I remember just being like, “How did I get to this point without realizing that that’s what I’m about to go through?”
12:01 ST: And at that time, when I was 18 and on Mount Rainier, I actually told the guide, I was like, “I’m not gonna do it. I’m gonna wait here for you guys and then I’ll hike down.” And so I thought about how, in the bone marrow process, I had kind of a similar reaction to thinking, “Wow, I’m really far in this process, and I really didn’t realize what I was getting myself into.” But I didn’t have the reaction of, “And now I want out.” It was more like, “Okay, what support am I gonna need? What am I gonna need to prepare because this is more involved than I thought it was gonna be?”
12:41 AL: Yeah. For me, there was this point where I knew the time sequence of things, and I knew when my recipient was gonna go through the chemotherapy and radiation to wipe out their bone marrow awaiting my cells which had to happen, I don’t remember, 10 days or something before I donated, and they flew the cells to them. And I was like, “Oh, my God, this is the biggest responsibility I’ve ever had in my entire life. If anything happens to me, this person is gonna die.” It was really an overwhelming feeling. We went to Telluride for spring break. I skied really carefully, and I thought, “What if we get in a car accident on the way back?” It was just this feeling of responsibility that I’m a wife, I’m a mother of three children, I’m a physician. And I essentially hold people’s life in my hands on a regular basis, but I never have felt such a sense of responsibility to anybody before. And I can’t imagine ever feeling that way again.
13:45 ST: A hundred percent everything you just said. [chuckle] I resonate with so fully. And I remember just… I was trying to work out every day to stay in good health. And for me, it was in the winter, and everyone is getting sick around me and I’m trying to stay healthy.
14:02 AL: Washing my hands like crazy, like, “What if I got sick?” Yeah.
14:06 ST: Yeah. And I would be in the middle of a workout… And sometimes I just have this overwhelming sense of that connection to the recipient, even though it hadn’t happened yet. But in those 10 days leading up to it, when I knew that their life was inextricably tied to mine. And I would just think about them regularly or I’d like… It was more visceral. It wasn’t even thinking about them. It was like I would just feel that connection.
14:31 AL: Yeah. And this person didn’t know anything about me, but they had to put this unbelievable amount of trust in me. Because they tell you, “You can back out at any point. We just want you to know there is a point where there will be these consequences, but you always have the right to back out.” And you’re like, “Wow, I could never back out.”
14:56 ST: Yeah. Was there anything that happened during that time? You mentioned going on that trip, but…
15:01 AL: No, there wasn’t, and I was very grateful. But you just worried about every little thing. I’m not a total worrywart, but, boy, you just, “What if I slip on the ice? What if I get a cold? What if? What if? What if?”
15:20 ST: I hope you’re enjoying our conversation. I’m just jumping in to remind you that it is always free to subscribe to Do Good, Be Good in your podcast app of choice. When you subscribe, it allows you to get each episode as soon as it is released so you never miss a story. Also, as we move forward into 2020, I’m open to ideas for new guests to interview on the show. If you have an idea, contact me at firstname.lastname@example.org. That’s email@example.com. Now, back to my conversation with Amanda.
15:57 ST: I didn’t have that procedure, so I’m curious in term… You said that it did have an effect. I don’t know what the words you used were, but it was more involved maybe. How much of an impact was that? What kind of recovery is involved?
16:15 AL: It was just mainly fatigue. The medication they give you ahead of time boosts your bone marrow, so you literally feel all your bones aching, ’cause that’s where the bone marrow is made, and you feel like you have the flu, your whole body aches. And then you go down and do the procedure, and I guess it’s a hemodialysis kind of machine. Your blood leaves your body. Tell me if I should stop, if you’re feeling faint.
16:39 ST: I’ll let you know.
16:41 AL: And they filter out the stem cells, and then they return it to your body. And they anti-coagulate your blood. I guess there are some chemicals that are going back through. And it was a long day, and we got a late start. They had some meetings, so it took them… They were delayed in putting in the central line, which was actually a big deal because the person who is collecting the cells had to get on a flight with them, an international flight. They had to be at the airport at a certain time, so the delay was a really big deal, and there is just so fast they can go.
17:15 AL: And then afterwards, I just remember being more exhausted than I can ever remember in my entire life. We stayed at a hotel in Phoenix that night. I had this huge bandage on my neck from where they took out the central line. It was very hot in Phoenix. It was like 100 degrees at 8 o’clock at night when we finally got back to the hotel. My husband dropped me off at the entrance to the hotel and then went to park the car, and he was gonna bring all the stuff in. Our room was at the end of the hall, and somebody had been holding the elevator or something. I had to walk up the stairs to the room. And I just remember he wasn’t there yet, and I just remember thinking, “I’m not gonna make it to the end of the hall. I’m just gonna sit down here in the hall and wait for him. I just don’t think I can make it.” I’m a fairly fit person, but I was that tired. It was just so exhausting.
18:07 ST: And that’s really the anemia, right?
18:09 AL: I don’t think I was anemic from that procedure, ’cause they were only taking out the stem cells. It was just something about the whole procedure that was so exhausting. And then I just remember we ordered room service that night. I remember asking, “Could you just send me some chicken soup and a grilled cheese sandwich?” I just needed some comfort food. And they were really nice, and they did. But it was very exhausting. When I did the bone marrow donation, I probably lost more than a liter of blood with that whole procedure, and I was pretty anemic. And that was physically more demanding to recover from, for sure.
18:47 ST: Yeah. Mine was 1.4 liters.
18:49 AL: Yeah. I didn’t ask in the end, but, yeah, it was a lot. And I remember, my back was literally the deepest purple I have ever seen. I’ve never seen a bruise look like that, and it was my whole lower back. And instead of being convex, it was concave, it was hideous.
19:10 ST: Well, I don’t remember that, but I don’t know that I could even look in the mirror, so I don’t know.
19:12 AL: Yeah. No, this was shocking.
19:12 ST: I still have the marks though.
19:12 AL: Yeah, I have some little scars.
19:12 ST: I asked Amanda how she ended up donating a second time.
19:12 AL: What happened was, the first time I did it, it was the peripheral stem cells. When the Regional Center was in Phoenix, they were… The woman I dealt with, whoever, my coordinator or whatever, was great. She just really was so into the whole thing and really kept me informed of things. And so I would get a little update from her periodically, how my person was doing, my recipient was doing. And he did not do well after the stem cell, it didn’t fully engraft, and he had a lot of complications and illnesses and everything. And so they asked me a few months later if I would be willing to do the bone marrow actually, and that’s how I came to do both for the same person. After I did that, it wasn’t long after that that they moved the regional center to California, and then I never got any more information. I know he had had a very rocky time and then I gave him the second… The bone marrow, and I didn’t hear too much after that, so I have no idea what his ultimate fate was or how he did.
20:33 ST: Yeah. To this day, I’ve not heard a single word about the recipient, so I don’t have a single update.
20:38 AL: And that’s interesting, ’cause I will never know anything more about my recipient, but the person at that center was great about updating me every few months.
20:47 ST: Yeah. I checked in about seven months afterwards, and she said there weren’t any updates yet that she could share, and to check in at a year to find out. So, I’m waiting. [chuckle] What felt different the second time around?
21:04 AL: Well again, they ask you, “You don’t have to do this. Are you willing to do this?” And I said I was. I felt like I had gone down this road and I… I don’t wanna say I felt obligated. I wanted to continue to do everything I could for this person. I felt really bad that they had had complications and hadn’t fully engrafted. You can’t help but not feel some sense of responsibility even. I was like, “Okay, whatever we have to do, let’s go ahead and do it.” I felt like the actual bone marrow donation was certainly a harder procedure to go through.
21:41 ST: For me… And I imagine it might be similar because you had a similar extensiveness of how much they had to take and stuff. For me, they said, “The recovery might take up to six weeks, particularly for the anemia, and have the regeneration of the bone marrow, so that you don’t feel so tired anymore and stuff.” And for me, it took the full six weeks until I was back to my same level of activity as before. The first few weeks were more the intense, and getting over the pain or bending or stuff like that. But, yeah, getting over the anemia was definitely like a full six-week process for me.
22:18 AL: Yeah. My friends spoiled me. They made me red meat, chocolate, red wine. People were really… After that, everybody knew, and people really spoiled me because of it, which was nice.
22:32 ST: Yeah. One kind of weird side note is that I had been on a diet the year before, getting selected as a bone marrow donor, and I was two pounds away from my goal weight. Leading up to the procedure, they said, “Try to build up your iron levels, eat red meat and chocolate and things like that.” And so I gave up the diet and I was like, “I’m just gonna eat whatever I need to eat.” And then in recovery I really needed the salty food, so suddenly I’m eating potato chips, which I don’t normally eat, and all of the salty stuff, and I gained 7 pounds in the recovery. Though my friend was pleased to remind me that they took 1.2 liters of bone marrow, so at some point in the middle of the procedure, I had reached my goal weight.
23:20 ST: I was like, “Yeah, that’s probably true.” And for me, actually going through the process helped cure me of the obsession over this intangible level of health that I think I was seeking by losing weight. Because I remember looking in the mirror the night before I went in for the procedure, and I completely saw myself in a different way. It was like before I had seen, “I need to lose weight, I need to do this, I need to do that,” and then suddenly I looked in the mirror and I was like, “I am a healthy strong individual. I just passed a physical with flying colors, where they were like, ‘You’re perfect, you are exactly what we need.'” It just was interesting. I was like, “Wow, what a mind shift,” to go from, “Oh, I gotta fix this or fix that with my health or with how I look,” and then to be like, “No, actually, you’re perfect. You are just what we need.” And now you’re about to have all of that taken away. [chuckle] I mean, not all of that taken away, but you’re about to go from what is actually truly healthy to needing to be pushed around in a wheelchair and be in the hospital and everything else. Yeah, I think partly it was just I had been so weirdly lucky up to that point. I had only been in the hospital once before then.
24:40 AL: Did you have to stay over?
24:41 ST: I stayed one night.
24:43 AL: Okay. I did not, but probably should have.
24:47 ST: Yeah. They even released me before they probably should have. They said I would have to walk to the bathroom before I could be released. And that definitely was not true, that did not happen.
24:55 AL: Yeah, I remember… First of all, funny thing, I had the meanest recovery room nurse I’ve ever encountered. She was so mean, she was so mean to me. I think my procedure took longer, and she wanted to go home, and I was not meeting my milestones the way she expected, and it was just gonna take longer. And the other person who had their bone marrow donation probably after me had already gone home, and she just… I just didn’t wanna eat anything, and I had to eat something. And my blood pressure was really low, and she was annoyed about that. And it got to the point where I just wanted to go. They put in an epidural, I couldn’t pee, I was dizzy, and my blood pressure was super low. And I’d see her coming, and I’d start pumping my arm so that my blood pressure would be a little higher. And I went into the bathroom, and I pressed on my stomach to be able to pee, and I was like, “Okay, I can go,” and she wouldn’t give me pain medicine until I had eaten something, so I was in pain. And then we’d have to fill the pain medicine prescription afterwards. It was just… It’s funny, it was like such a… It was just a good thing to do, and you’d think that people would treat you nicely, and I’ve never encountered such a mean person in my whole career.
26:20 ST: Was the place you were doing it at a dedicated bone marrow center?
26:23 AL: Yes.
26:24 ST: Wow, that’s weird.
26:25 AL: I know. I think she was just annoyed ’cause she wanted to go home, and the other guy who had had his procedure done after me did so much better. [chuckle] And then I remember my bandage that they had put on my back after the procedure was absolutely soaked. There was so much blood and stuff on it, and she wouldn’t change it. I was in this wet… It’s funny. The whole post-procedure thing was terrible. [chuckle] You did this nice thing, and you’d think people will treat you nicely, and it was just… That was awful. But then we went back to the hotel for the night… And I know enough about medicine to know if I needed to go back in or whatever. I didn’t feel uncomfortable with that. And we spent the night, and then went home. And then I’m surrounded by my physician and nurse friends, and they all doted on me. And it was all okay. It was just that couple of hours in the recovery room.
27:23 ST: No, I had a long time in the recovery room. My procedure ended in the afternoon, I think, and I stayed the whole night. I was there more than 24 hours actually, because they weren’t able to take an auto unit. They had told me when I came for the physical that one thing they like to do is take a unit of blood so that they could give you a transfusion of your own blood afterwards, if you needed it.
27:48 AL: But your procedure was so quick after your… I can’t imagine that you could have regenerated your blood in time.
27:54 ST: Right. So, they were already debating, “Is there even enough time for us to do this?” And then I was late, and so there wasn’t even enough time before I had to fly out to go back home. So, I got out of it and I was really glad I got out of it, ’cause I’m afraid of having blood draws, and I really was already freaked out about that. But they almost had to give me a blood transfusion the next day, because it was so low, and I was so anemic, and my blood pressure was so low, and all kinds of issues. Luckily, I managed to get out of it. I’m curious about the reaction you’ve gotten from other people.
28:33 AL: Yeah. I think surprise and admiration and, “Wow, that’s really cool.” And some people are like, “Wow, I wish I had matched so I could have done it.” And others were like, “Well, good for you. I don’t think I could have done that.”
28:47 ST: I’m always surprised by people who say… Well, I’ll say I’m surprised by people who say, “I never could have done that.”
28:53 AL: Yeah, I am, too.
28:55 ST: Particularly because of the people who tell me that. I have someone who said, “I could never have done that.” And she works with refugee women who are survivors of sexual assault, and goes into refugee camps and helps them. And I’m like, “Wait, what?” It’s not that she’s afraid of doing hard things that take risks, or… And there’s plenty of times that I say “no.” [chuckle] And yet for this, it never was something that I…
29:27 AL: Right. I never hesitated.
29:30 ST: Yeah, neither did I. I wonder if part of it is just that it is… And I don’t think people realize that it is such a… Not a once in a lifetime, but almost once in a lifetime. I mean, you are that person’s match.
29:47 AL: Right. And they might not have another one.
29:47 ST: Yeah. I asked Amanda what, for her, was the hardest part about donating bone marrow to a stranger.
29:54 AL: It’s hard not knowing and, for me, knowing I’ll never know.
29:58 ST: The podcast is called Do Good, Be Good. What do you think it means to you to be good?
30:05 AL: Certainly doing something like this, without asking anything in return, just to help somebody. I believe in the inherent goodness of people, that given the opportunity to do something to help someone else, most people would do it.
30:21 ST: Well, now you know part of the story. Keep listening to Do Good, Be Good. I promise that one day I will share my full story, with all of its twist and turns, many of which I did not get into on today’s episode. During my interview with Amanda, I didn’t yet know what the outcome was for my recipient. I have since received an update from Be The Match, but for now I’m choosing to keep that information private.
30:48 ST: Thank you for listening to Do Good, Be Good. For show notes on today’s episode, and all the episodes, visit the website at DoGoodBeGoodShow.com. And if you want more behind the scenes stories and insights check us out on Facebook, Facebook.com/DoGoodBeGoodShow.
31:05 ST: Thank you again to Amanda for coming to my home studio and for sharing her story. On today’s episode, I was your audio engineer, producer, host, and all of the other things that went into making this podcast. Music in this episode is “Bathed In Fine Dust” by Andy G. Cohen, released under Creative Commons Attribution International License, and discovered in the Free Music Archive. Until next week, this is Sharon Tewksbury-Bloom signing off.