On this episode, Jenn Schimmel, Zeta Delta, talks with Kelly about her bone marrow transplant. You can learn more about how to become a donor at bethematch.org.
Disclaimer: This transcript was developed with an automated transcription program, spelling and grammar errors may occur.
Welcome to the Alpha Connect Sisterhood series podcast. I'm your host Kelly McGinnis Beck, national president. This podcast is all about sharing the stories of our members and our connection through Alpha Sigma Alpha. Thank you for joining us today. Welcome to the podcast, Jennifer Schimmel.
Hi, thanks so much for having me. I'm excited.
I am to so I'm going to ask you to start like I do with every guest, tell us your Alpha Sigma Alpha story. How did you become a member? And make sure that you include your chapter name and your school?
Absolutely. So we'll start with that my chapter is Zeta Delta at Massachusetts College of Liberal Arts back in the day, it was called North Adams State College.
I knew... I didn't know it as that name. So I'm glad you said that.
Nobody knows it is NCLA. Yeah, I went to North out of state, not a serious College. Loved it. It was amazing. And honestly, I didn't join. until the middle of my junior year. I had been so not interested in Greek life. I played on the men's lacrosse team. They were fantastic. These were like my go to people. And I, that middle of junior year, you know, I was all of a sudden I was like, I'm missing something. I'm missing this component in my life. And I had gotten to know a lot of the AΣA's on campus. And they had been asking me for a long time to come and hang out and check them out. And so finally, one day, I was like, Yes, I really could use some good, strong, intelligent women in my life, and took that leap of faith. And it's been the best decision that I've made ever since. I mean, I love my relationship with AΣA.
Wonderful. So you joined as a junior, now were you... Did you go through formal recruitment or informal recruitment?
I went through formal recruitment. If you could call it that on our campus.
So tell us what that was like.
Back then, it was an interesting experience. We could probably six Greek organizations, women, women's organizations on campus. And so you know, there was the tabling, there were the different skits and things of that nature. And it was a it was interesting to experience all of those different pieces. But my my group, the group that I, you know, started the terminology pledged when they were all freshmen. So it was a little strange to be this junior at least freshmen together. And experiencing that together. But to watch them go through, it was so different than how I imagined it to be, you know, I thought, Oh, this is gonna be like a piece of cake. And there were definitely some interesting experiences along the way, things that we're probably not supposed to do today. That definitely happened then, you know, when I hear things that you I definitely have a name that I love that my my sisters call me, but I think oh, that's probably not appropriate anymore.
Yes, absolutely. It's like, Oh, wow. Yep. Not the most intelligent thing we did.
Well, and I have to chuckle as you say, you know, the women that you pledged with. So when I was working with collegians heavily, and we used to get into that conversation, right? Where people are afraid to use that word and like it's a verb. You can use it as a verb, right? You pledged together. It's not a noun. Therefore, you can use it to reference the person, but you can absolutely use it in the proper context.
Oh, I love that. I feel so much better. Because I'm like, How do I say that? Is that? Okay?
They pledged Alpha Sigma Alpha. Absolutely. Taking a vow and so Absolutely.
Good. Thank you.
You're welcome. So talk a little bit about your involvement after college, because I know before we hit the record button, we were talking about the fact that you've been involved, I think, almost since you graduated college, and we've known each other for many, many, many, many, many years, as a result of that as well.
Yes, yes. And actually, my first volunteer gig really went Alpha Sigma Alpha was with you. I was the advantage coordinator.
I remember driving to Pennsylvania and meeting you and just being welcomed into this group of people. I had no idea who they were. And my relationship with AΣA as an alumna has been incredible. And when I hear people talk about their collegiate experience, my collegiate experience was not I mean, it was fun. It was great. I love the women I spend time with, but it's so dramatically different than the relationship I have with the national organization and as an alumna, and it's been the most gratifying experience because I have taken on so many different roles over the years from advantage to you know, being a chapter advisor to being a colony coordinator to to working with the foundation, I just so many different opportunities to learn and grow, but also to create relationships that I never imagined I would have. And before we hit record, we were talking about Jamie. And I've met Jamie and Chris, two sisters, here in Connecticut when I was I still am the president of like the Connecticut Alumnae Association. And I met them probably 18 years ago now. And Jamie and I and Chris are close, close friends. Like I can't imagine my life without them. And I never would have met them other than being an AΣA alone. And it's been an incredible journey,
Because they were not members of your chapter.
Correct. They were not they both went to Mansfield University.
Or Mansfield College, whatever it was. University. Yeah. Yeah, it is University. Okay. They probably be like, really, you don't even know where to school?
You said Mansfield, that was the most important part of the school name.
Exactly. And we're super close. We have been, you know, I was in Chris's wedding. We've traveled all sorts of places together, we've been to conventions together. We do these murder mystery nights at my house sometimes where we get this like whole crime scene thing happening. And we like have to solve a murder mystery or closed case. And it's been incredible, just absolutely incredible.
So wonderful. Here, I mean, especially joining as a junior, right, you had a very short time as an undergraduate member, but we spend our lives really as alumnae members, that's the largest component of our membership experience. And often it's, I always think it's interesting, you know how some folks will just focus on those couple years in college, and not realize what they might be missing out by continuing to be involved in some way, shape, or form that everybody has to volunteer, but just think about alumnae chapters and or going back and keeping in touch with your chapter sisters that you got to know, in college, just different ways to foster those connections with folks.
Absolutely. I think so many people miss out on the opportunity, what the alumnae piece really is. And it makes me sad for them. They're missing the best part.
While we just have to keep getting a good word out so that they can learn. Well, and certainly I think coming to events like convention I know for me as a collegian coming to convention my first time and seeing all of the alumnae that were in attendance and just thinking wow, like look at all these women who come together every other year, and celebrate Alpha Sigma Alpha, and here they are with their letters and dancing around and just having a blast. And just for me, it really epitomized what lifetime membership looked like. And that was what really hooked me, I think.
Absolutely. My first convention I had the pleasure of meeting Dolly.
Oh, Dolly, right. Sit next to her and a meal, did you?
You're smart. Because if you sat next to D`olly Lloyd at a meeting or at a meal, you were given an etiquette lesson.
Oh my gosh, I would have gotten a big one.
So she was very much at critiquer. So I loved Dolly immensely. But I learned quickly you don't sit next to Dolly in a meal unless you're prepared to be critiqued or have you know just perfect etiquette and manners. I do not. I think I'm okay. But like, I always think about her especially as like I eat my dinner roll or something like I just I always think about what her lessons were so she's always present in my mind when I sit down to the table.
Oh, wow. Yeah. I'm kind of glad I didn't experience that.
Oh, you missed out. Especially with her her beautiful, you know, Southern Mississippi accent?
Oh, yes. Loved it. I was she was larger than life. And it was such a great experience to meet her at convention and to feel just this immense amount of love from her. Having never met her before. You just knew instantly like she adored you. We were just you were there. And she was anywhere important to her. It was so great.
It was. Yes she she is definitely very much missed.
So one of the things that we had talked about before we got started here and in kind of the the next step in our conversation is really for you to share your story. So you are a bone marrow transplant leukemia survivor. I'm not sure I said that. Exactly. Right. But something along those lines. And so tell us a little bit about that experience. And I know a little bit about both bone marrow transplant certainly have heard it and Robin Robert So on Good Morning America, and ABC certainly promoted that quite a bit when she had her own. So I'm familiar and we had somebody in our local community that needed one. And so there were lots of folks getting tested to be a donor. But tell us about your experience.
Yeah, absolutely. So I'll start from the beginning, because I think it's important to hear sort of the whole the whole weird... that happened, and I delightfully call myself a purple unicorn. The reason I say that is that everything that is traditional and how one presents with things, I'm not that every time they say, oh, typically it goes this way. I'm not typical. Not an ounce of this has ever been typical, which is unnerving a little bit along the way, where you go, Oh, I don't really want to be that special. I mean, I know I'm special. I want to be that special,
A good special or not so good, special?
So it's been a mixed bag of good and bad in some ways. It was good because everything went really quick. And I got to solutions very quickly. In some ways, it was bad in the sense that they really didn't know what was wrong with me for the first four months when I got sick. Because I was a total mystery. Yeah, exactly. Just Oh, is how that's the word for it. Because that's how it felt. And so I had literally just come back from vacation. And you'll be you won't be surprised Jamie was on this vacation, which, right? We blame the hike. This is our statement. We always say it was the hike fault. And we came back, it was Labor Day weekend of 2018. I went to my neighbor's house, because we're all really close and hung out for the night. And about eight o'clock, I went home because I said I have a little bit of a fever. I'm just not feeling well. And before I knew it, that fever became a high fever. And I got tested for the flu. And they said I was positive. So they gave me Tamiflu, and it did nothing. And so for the next several days, I was 102 103 Just making crazy fevers and said, I think I need to go to the emergency room. So I did, I went to the emergency room. And they put me I didn't realize it at the time, but they put me like in a hermetically VAT, you know, sealed room. And it turned out that I had neutropenia. So I had no white cells, I had no red cells and no platelets, essentially, my immune system was completely wiped. And so I was in a bubble at that point. And they had no idea why. And so they had to do a bone marrow biopsy family to find out and so they tried that three times with no medicine. It's excruciating. And they came back with no results that they had no idea what was wrong with me.
So what do you do? Can I interrupt for a second? Yeah. What do you mean my no medicine?
No medicine, I've in no pain meds, no Asia?
So they like little stuffing? Oh,
yes. And so a bone marrow biopsy. This is really painful. They they drill a hole into your hip. And they take a chip of your bone out of your hip, and they take a liquid aspirate for liquid portion of your bone marrow out of you. And they did that three times with no medicine. And they wanted to do what the fourth time and I was an emphatic no. I was like, No, I won't do it. I don't care. I don't care if you need to find something. You're not touching me again. They eventually gave me anesthesia. But they were afraid that if they put me on the men put me on anesthesia that they'd have to intubate, and they weren't sure that I'd come out of that,
okay, because it's such a high fever.
Because I had such a high fever and I had no immune system. They didn't think that I would that I could handle it. So I mean, it made sense as to why they did it, but never do a bone marrow biopsy without some sort of medication. I'm an advocate of that. Definitely asked for the meds. So it turned out, they eventually let me go home and live in my bubble in my house. And every week they took blood and they sent it to the Mayo Clinic and analyze that and we got to about December 5t and they came up with an answer. And they told me that I had something called myelodysplastic syndrome. MDS for short. MDS hits men over the age of 65 with high blood counts. So I'm a unicorn. I'm a woman. I'm nowhere near 65. And all my my blood cells are low. So they started writing a white paper on me. I feel like it was an episode of House. Oh, yes. And so MDS if left untreated, becomes AML leukemia, but traditionally, it's a slow moving target. It takes a long time for it to become leukemia. In my case, it was leukemia by December 26 of 2018. So, four months later, I have now leukemia they send me to Dana Farber in Boston. They reconfirm that it's definitely leukemia and they immediately start me on chemo. So I went from zero to 60. And I was in the hospital for seven weeks. I got to come home a couple of times, but again, in that whole unicorn scenario, they started finding matches for me for bone marrow by train Implant, my sister tested at 50% positive, they found anonymous donors who were 100% positive for me, and they found over 50 of them. And normally you find one or two people who are your match. So I already started in this trajectory that was like, we're gonna be unicorns. So I'm gonna find 50 potential matches to fix me for something that no one usually finds a good match for.
So there was blessings and curses all along the way. So on April 17, of 2019, so I'm about three years out of my post transplant, I had a it's essentially a glorified blood transfusions. They make it seem like it's going to be the biggest thing in the world. And it is, but it's anticlimactic, because it truly is like a blood transfusion of stem cells that they put into your system. So before they do that, for eight days straight, they completely wipe you clean, I had no immune system at all, I was completely in a bubble. And you couldn't come into my room if you hadn't been like, basically washed from head to toe and covered in anything and everything to keep all germs away for me. They basically shut my body down, gave me new DNA and started me back up. So I'm my, my DNA is completely run internally, my bone marrow and my blood is completely run by an anonymous donor.
So this is gonna be a silly question. But does that mean you have different DNA now?
Yes, it does. The DNA in my blood does not match the DNA in my cheek, there are two different DNA.
So you rob a grocery store like?
Fingerprints still the same. But I had a register with the federal government, letting them know that I was changing my DNA so that if I were to commit a crime, or the donor was to commit a crime, they would know that we would both show up in the system. Oh, that means somebody tried it. Because we the only time they give you those kinds of things is because somebody did it,
Yes. Can you imagine the first person who was like, I'm gonna get a DNA change after I commit murder so that I can't be found?
Well, or like the person that got the like, that was like you, right? And all of a sudden the police show up on your doorstep about some crime, and you're like, I have no idea what you're talking about. That wasn't me.
That wasn't me. There's no way that was me. Yeah. Yeah.
I can't do that. I didn't realize that. That's fascinating.
It is really fascinating. And it's really like to think about that, right? Like, my whole internal DNA is somebody else completely. It's so like, sci fi.
Science is cool.
Yeah, it really is. Like, I feel like I'm a walking science experiment.
Well, I'm sure, since you're a purple unicorn over there that the doctors definitely believe you are a walking scientist.
Yes, absolutely. So my blood type also changed. So I was AB positive, which is a universal giver. My donor was O negative, which is, you know, universal either way, and so don't abo negative,
though. So you have like all all of like both of them.
Almost all three, but I realized that was three letters, not three types of?
Yes, I would have done the same three types, right. So it all got merged into this one funky hybrid of a blood. So I can't, you know, like I have to when I go to an emergency room, I call my doctor ahead of time. My doctor calls the emergency room. And I basically have concierge service, which is kind of nice when you go to the emergency room because they whip you right into a room and protect you right away. But they have to do a bunch of tests to find blood that they can give me because they also have their Radek like, like radiate the blood to make sure there's nothing in it before they give it to me.
Wow, that's a lot. Well, so you kind of say like, Well, when I go to the emergency room, sounds like you might be a little bit of a frequent flyer there.
I was for a really long period of time, knock on wood. It's been a while since I've had to go, which is great. But there was a period of time when I was going to the hospital probably every seven or so days. And I'd be in there a few sometimes I'd be there a day or two or sometimes I'd be there longer. Because anything I would get a pimple and it would turn into an infection. I would get a cut in my finger and it would turn into an infection. It didn't matter what it was my immune system couldn't handle it
all because it was essentially being rebuilt.
Yes, exactly. So even to this day, like it was the greatest thing when I got to the point when I got to nine months old, and like a baby, because they zeroed me out. And then I got to nine months, I got to have my vaccines. I have never been so excited to get a polio vaccine in my life.
So they really kind of start you over like you're reborn.
Correct? They call it a reverse. Yes. So to this day, I'm still not inoculated for MMR, mumps, measles, and rubella, because it's a live virus. And my body can't have the live virus yet.
So that means you can't get like the flu vaccine and anything that has some sort of live component to it.
Correct. So I can get a vaccine that doesn't have live. So flu, sometimes doesn't have a live vaccine. So I can do that. And I was able to get the COVID vaccine, and I got three of them. And that was just considered normal stuff to get a booster. And I've got my polio and TB and almost everything. But if it has a live virus, it's not something I can take. Crazy.
So gosh, I wouldn't even think to do normal doctor's offices, like adult doctors offices have all those vaccines in stock or her because you know, I think about my kid, right? You took your child to the pediatrician. Well, of course they have them in stock, they specialize in children.
Right. So they have all of that. So no, typically we don't. So actually get all of that done at Dana Farber, and they mix it on site. It's like, they make me my own special vaccines on site when I come and I get my own special concoction. Wow, that's just for me.
It really is. It's been a really cool experience to go through in some ways, like truly like when people say like, Oh, my God, you've been through all this. How are you still standing? I'm like, because it's I like I would like God and I've had just this really incredible experience with doctors and somebody else has it worse than me at the end of the day. Like I'm still standing. We're good.
It's it's a good outlook to have to go through such a challenging situation. And, and healthcare. What was what was recovery, like? Like, I imagine they kept you in a bubble for a good long time.
They did. So if you can imagine the first conversation we started having about what recovery looks like from a bone marrow biopsy, I mean, bone marrow transplant, the doctor said it's 100 days, the first 100 days, you're in a total bubble. And I was like, okay, like, what does that mean? She's like, you can't do anything for 100 days. You can't open your windows. You can't have fresh air, you can't eat real food. It has to be processed. So an Oreo was my friend but a piece of fruit was not.
You were home for this?
I was home for this
So day one, they sent me home. So the 17th of April was my day zero where they gave me the transplant. then day two, April 18 They sent me home because I was safer in my home that I was in the hospital.
Well, I get that right because of all the germs and infections. So that makes sense. Yeah. Did they like literally wrap you in a bubble to take you like from the building into your so you didn't get fresh air?
Yeah, pretty much.
Oh my god. I was kidding.
Like, not a total bubble, but like masks and gloves. And yeah, I mean, I was like, Oh, yes, locked down completely. And my friends. So this is so funny. A group of friends came over to my house before I performed at home because they had to clean everything from top to bottom. They had to like steam clean the rugs, they had to make sure all ducks was out of the house. And they did a lovely job and they went to clean my bathroom shower and the shower heads fell off in their hands. And they all panicked. Like she's coming home. We just broke her shower. What are we gonna do? And they're like, in tears, like, it's fine. I've got friends. I call the contractor, a friend of mine, and he fixed it right away for me. So I could come home, but they were panicking because they're like, we just broke her house and she She has nowhere to go.
Oh my goodness. Okay, so how do you get rid of dust like that? It doesn't come back. I'm fascinated.
Right? Oh, it definitely goes back and pretty, pretty quick. So they, I mean, they literally had to clean all the air vents. They had to vacuum out the air vents, they had to steam clean the rug. They like scrub every ounce of everything they could find bleach everything they could find to try to make it as disinfected as humanly possible. And then weekly, people would volunteer and show up at my house and help clean so that I would stay safe. And actually the Beta Sigma chapter and New Haven came up once a month and visit with me and clean the house. Yeah,
that's so sweet.
Incredible. They would they would take text they were like we're on our way. We can't wait to see you and they would come and help.
So you have have the cleanest house on the block?
I did have it anymore, but I did it.
Wow, see? And my guess is correct me if I'm wrong. So as people did come to visit you, they had to obviously make sure they weren't ill.
Yes, or anything like that.
Were they then like, was there a period like this first 100 days that they have to wear masks and everything around you?
Okay, so you were you were styling masks long before the pandemic started.
I think the world was like Jenn Schimmel is so cool. We're all just going to do that's my theory that like, Oh, this looks so great as her let's do it, too. They had feet booties, they'd have to put on the track anything in the house from outside. They had gloves, you had to sanitize and put a mask on, you couldn't come within six feet of me. Like I had my own.
So you totally were like pandemic style, social distancing from everyone long before it was cool to do so. Yes,
yes. My neighbors would come and hang out outside, they'd make a circle. If they placed my chair and then they would circle around me like within maybe like six feet away. It'll be just, you know, my little audience.
Oh, my God, like I'm, I'm crying laughing just thinking about this. Right, like, so by the time the pandemic rolls in, you're like, I got this. What do you all making a big deal about like, I've been living my life like this for how long?
Exactly? People would complain about it. But like, it's really not that difficult. Like, you can put the mask over your nose, like I got my blood checked and my levels, my oxygen is always 100%. Trust me, the mask does not affect any of them. We're good. We're good. You can handle this.
So was that? So first 100 days? Oh, my gosh. So I'm thinking about this. Right? You said you had the transplant in 2019. So you get through your 100 days, like do you get to like this? I can shut the masks and free and then the pandemic comes?
Yeah. Exactly. Yeah. And it was a full year before they would let me do really anything like and when they would talk to me. I mean, I must ask her like 10 times, they'd be like, well, when can I eat this? And she's like a year. Okay, so when can I travel a year? I'd be like, like a full 12 months, like a whole 365 days. They're like, yeah, a year. I was like, Are you sure it's a year? It's a yes, a year? Like, can we do it in nine months? Or like, no, it's a year 12 It's going to be 12 months. I mean, it took me a long time to understand that I was like, I don't understand a year. This doesn't make sense to me. And I was I was just completely locked down. I didn't go anywhere. My son got to come home after the first 100 days. So he would come in from outside or from school or from camp and he would take his clothes off in the hallway. And he'd go straight upstairs, and he'd shower. And they put gloves on he take his clothes and put them in the washing machine. So you imagine a nine year old doing this?
Oh my goodness, that must have been so stressful for him to watch his mom go through all of this.
Yes, I hear but he was my, um, he was my buddy. He was like he was with me all the time. Like he was like, why unrest to me, like it would not leave my side. And, and he told me I love you. But every three seconds for almost a year and a half. Because he just he needed to be loved. And he didn't know I was fine. And so it was just we finally got to the point where maybe he tells me he loves me every hour now, as opposed to every three seconds. But it's still this urge, you know of like, are you still there? Are you okay? Like, I need to tell you, I love you. Which is so precious and so alarming at the same time. It's like, it's okay, I promise you I'm okay. And he's 12. Now, he's 12.
Wow. Well, you take for granted I think life in general, right? Like we always someone dies too young. And you say oh, you know, you got to either enjoy life. You got to tell people that you love them more. And, you know, that might last a short period of time and then you kind of regress back into daily life. But for him like that was front and center. So I I think that's one like, terrible thing to have to go through. But wonderful for him to realize like I love my mom. I appreciate my mom and I'm going to make sure she knows that every single day.
Yes, and he really does. And he is so good. So when I have those off days when I'm just not feeling well. He's like I got you Mom, don't worry about it. Like what do you need? Can I get a drink? Can I do you need what do you need? Like I'm on here. I'll do anything you need me to do. Like he's such just a great kid. You know, he's, he's my body. He just he's so great. I'm so blessed.
Yes, that's so sweet. And so what is what has he been up to? Like? How How has this impacted his maybe social life or school life, like, to your point like he comes home, he takes off like he, he was like a nurse during the pandemic, right, they came in, they stripped, they went and showered. And like, literally you have just described what everybody had done, or especially our medical professionals during a pandemic, only you did it before it was trendy. But like for him, like so, you know? How did he adapt to life? You know, realizing mom's in a bubble, I gotta protect my mom. But knowing you the way I do, you're also probably like, but I want you to still be a kid and have a social life and do all the things. And so how did you find that kind of balance? What did that look like?
That it was hard, but you know, I am blessed. My gift in life is making friends I've always said that I have a knack for making friends. And thank god I've spent my life making friends because my friends truly stepped up. We had friends who would just pick them up and take them places they would bring them on playdates they would you know I had friends who like we got them, we'll take them to camp every day with us. Like, they really made sure that he had a life outside of just coming home and sitting in the house with me are sitting in the backyard with me. They they truly helped him through all of that and they still do regularly my neighbors also pop over and say hi and make sure he's okay. In taken places and just everybody just has rallied around me and really rallied around him. It's like a huge blessing you what you put out into the world comes back to you. And you know, I've never made friends for that reason. But man when you when you when it comes down to it, and you have this group of friends who who truly drop everything for you and just come running is clearly the most amazing thing ever,
ever. Really. What a blessing to have that in your life.
Huge blessing. Huge blessing.
So we've we're coming out of a pandemic, where is the first place you're going to travel to if you haven't traveled already.
So it's been a little bit of traveling, but it's been really sheltered, right? My doctor has approved me to drive to my sister's occasionally and she lives in North Carolina. That means driving like 15-18 hours straight. Like I get in a car, I go to the bathroom. Occasionally I get gas occasionally. But we don't really do a whole lot in between, like we just go and we get to our destination. And my sister thankfully lives by beach. That was brilliant to go hang out by the beach and my sister's children lived near her and so I get to see my niece and my nephew. And that's wonderful. My sister and I have agreed that was uncleared we're taking a trip across the pond across that large pond. I want to go to Greek if I if I can we want to do like the Greek Isles. Together. I can't wait to travel. I'm just itching. And then of course, because we know, you know, this is an obsession for many of us. I want to go to Disney World.
Yeah, yeah, you've been before.
I used to go like every couple, you know? Yeah, every couple of months if I could. Like, you know, like Shane a level, you know, just go to Disney. So I am I missing Disney like you wouldn't believe
I can, I can understand that. So literally, you know, the question they always say like to the sports person, like you just won the Super Bowl, what are you going to do next? You're, you're in that same boat of you've just got cleared to travel from your bone marrow transplant? What are you going to do? Next?
I'm going to disneyworld. at the top of my list.
Oh my gosh. And so when when have they said you're allowed to get on an airplane and go somewhere?
So originally right when pandemic hit. Like, you're clear, except the rest of the world shut down. So you can't go anywhere. Like you're kidding. It's like yeah, that's how it works. So really, right now I'm I just had another bone marrow biopsy because I've been having a little bit of a with my, my blood counts have been low, my reds and my whites. And they've been trying to figure out why. So I had to have another bone marrow biopsy. And they looked last week, actually. And they've determined that there is no leukemia in my system, because they have to figure out why my Yes, thank you it is that they have to figure out why the blood counts are so low. And so they've attributed it to what they call a destruction issue. That basically something in my system, they think maybe my immune suppressant drug which is rare that this happens. So of course it would work for me that the attacker which is this immune suppressant drug they think is what attacking my system now it's no longer helping me now it's hurting me. So we're taking that out and doing some blood transfusions. So assuming that all corrects itself that maybe by the summer I'll get cleared to travel. Okay, I'm praying. I'm praying because I really want to go somewhere.
I don't blame you. I think, you know, for those of us that love to travel, the last two years have made us all stir crazy sitting in our houses and not getting to go anywhere and see people.
Yes. Yes. It's brutal. And so I got I got a head start on you all.
Did you got like the bonus round?
I did. I got the bonus round. I got to make it look cool.
Yes, you were you like, by the time it all came to us. We're like, you want us to do what? You're like, Oh, I got this. Let me show you how to live this life.
Exactly. Yeah. Like this is easy peasy. It's fine. It's no big deal.
Oh, my goodness, crazy. So what does what does follow up care look like? So you've gotten a bone marrow transplant? You don't have leukemia in your system anymore? You're essentially cancer free? What like, is that a regular kind of annual follow up? Obviously, they're testing your blood to make sure but like, what, what does that follow up care look like for you.
So right now, because of the issue I have going on, it's like a weekly check in with bloodwork. But if this issue wasn't happening, I was on a three month schedule every three months, get a checkup. And then eventually we get to six months. And eventually we get to a year. So the goal is that by the time you're five years post transplant, you're only getting checked up on every year, because you should be stable enough that that's not an issue. That's that's what we're aiming for a yearly checkup.
So they treat that kind of checkup similar to how other cancers are done on checkups.
Yes, exactly. Exactly. But it's it's like having a I mean, it's very similar to having like a donor transplant, like an organ transplant, very similar process. But it's your blood and your bone marrow instead of your organs.
So do they put you on like, because now that you've said organ transplant, my first thought is alright, but then they usually put you on some sort of drugs to help you not reject the organ that has been replaced in your body. Is that what they essentially had to do for you then to make sure you didn't reject the blood transfusion?
Yes, exactly. So that's part of like the tak RO, which is this immune suppressant drug, it keeps your T cells out for a period of time, I have a little list of you know, different things that give me that do different things like antivirals and blood thinners, all sorts of fun things to, to kind of regulate my system. And the goal is to eventually get rid of all of them. And so now we're kind of fast tracking some of the get rid of because they think that that's what's attacking my system.
Which again, is that rare kind of thing, right? They're like, Oh, normally, this would happen the first three months if it was going to happen here. What's happened three years in. So yours is rare. And I said to my doctor, can we just started the rare analysis stuff first? Yeah, probably where I live. I live in the is not typical. So maybe we should just start
there? Well, I think that's a that's a fair approach, right? Because you as you've shared, you've gone down the path of everything has been atypical.
Correct? Yeah. For whatever reason. It's just like I want I'm just special about this. I'm like, I've had enough a special
there's something to be said about going to the doctor and just being boring and routine.
Yes, yes. I would really liked it to be one of my visits. Just like you're gonna see later by,
I'm sure it will be in your future.
Yes, I'm sure it will be too. I have. I feel very positive about that. I feel very positive.
Yes, absolutely. I, I hope for the best from that for you. So you also work in the nonprofit space, correct? I sure do. Yeah. So how has being in like, nonprofit world had an influence on your experience and vice versa?
Oh, I have never worked in the for profit world. So I don't even know what that looks like. Other than being a waitress, quite frankly. I think waitressing was fundraising. The same as what I do now. Same job. Fundraising just for my pocket and so somebody else's
interesting spin that I've never heard before. Okay.
Really? Yeah, it's the same job right? You're trying to upsell somebody on something and make them feel good about their choice. And it's very, you know, there's nothing to get real return for it right. It just is so good. I think if you waitress you get really good at how to ask people for things, because it just becomes very natural. The nonprofit world is something I'm you know, I love but we're so dysfunctional in the nonprofit world. We just don't run normally which does lend itself really well to being sick in a sense because people are They tend to lead with their heart on the sleeve. And so they tend to be really kind and caring about stuff, which is helpful in that. So that part's been really good. And I've changed jobs a few times through this process. And hopefully I'm changing jobs, maybe in the next week or so as well, which is exciting. I've technically accepted a new job. So I'm just waiting for all of that to kind of pull together. But habitat, I've been with Habitat for 13 years. And the beginning part of my getting sick was really good. They were really great gracious about the whole thing and really comfortable. And then they kind of went the opposite way that they found it just lost their minds, and became really unhelpful. And so I ended up leaving habitat and not the greatest of experiences, because they just stopped being very supportive and thought that they started judging me on having cancer and sometimes having a brain in my head still. Wow, like, it was very heartbreaking. It was very heartbreaking. But then I went and ran another sorority for a while, which was fun. I went to omega phi alpha to be their first executive director, and it was a blast. And it was cool to see another organization from the through a different lens. It was a really cool experience. And now I'm at Harvard International University for religion and peace, which is a mouthful, and I like it. But I'm not challenged enough, I really want to be back in a leadership position, and not in just a fundraising role. So for me to be
an ad, so is your new role. I respect that you probably don't want to share all the details yet until it's, you know, done and dusted. But an executive director role then
it is, it is yes. Which I'm super excited about. And it's in a faith based organization. So I've had a trend, really the last, you know, bit of my career has really been focused on places that are that have some faith component to it, that there's something a belief that something bigger and better is out there, I'm very much a let go and let God kind of girl that's, that's a good thing to me. Like I just trust in it, that if it's the right place, that whatever you want to call God, or unethical being or whatever, it just moves you when they're supposed to move. And I've trusted that the whole way through this. Absolutely.
Need to draw your strengths from wherever, wherever that can come from. And certainly I know a lot of folks who are faith base, that is a huge component for them.
Yeah, yeah. I don't really think of myself as very religious, but definitely faithful.
So what's next for you? In what sense? In any sense, so alpha, sigma, alpha land, you know, travel, all of the things, what are you looking forward to?
I'm looking forward to so much. I think from an Alpha Sigma Alpha perspective, you know, I'm still I'm taking I'm reapplying for the same volunteer position I had for this last year. We're so which is for regional 11. I am gonna get the name of it wrong. Of course, it's like it works on like social responsibility and risk.
That's exactly what is social responsibility.
Well, look at that. Yay. I feel really good about that. But truly, I'm hoping to go back to be able to work with the foundation at some point because I really like raising money, and I love AΣA and so if I could do the two things that I love to gather, again, would be just a huge blessing for me. So that's in my trajectory in my head. So hopefully asase Like, yeah, let's do that sometime. That would be wonderful. Yeah, you
should connect. Nikki koala is going to be the new foundation share. She starts, I think their, their timeframe and their fiscal year ends in May. So I want to say she starts in June. Does that sound right? April? Sound like? Yeah, yeah. It all blends together, I think might be on the same year as they are. I guess they are. They're on the same. I think as the sorority, it's just in my head because I know that our National Council comes on board after convention. That's where I've got my little disconnect where the foundation starts really at the end of their term.
Yes, yeah, that makes sense. And I know Nikki, so that's even better. So I will definitely reach out to her. That's a great idea. I think from a travel perspective, I'm hoping at the very least I can go to North Carolina and see my sister. And then as long as the doctor clears that my sister and I are going to try to do some big trip to like, you know, Greece, or maybe she's ever been to Paris. So we've talked about going to Paris, which I loved. I loved Paris. That was amazing. That sounds exciting.
That would be super
exciting. And really I'm just trying to spend as much time with people as I can. That's really my focus, right? Like, people, people, people as much as humanly possible, because that is what got me through all of this if people want to spend more time with them.
Absolutely. Well, and it may be two years, you'll be clear that you can come to convention, wherever that may be. Yes. I'm not allowed to say yes.
Just say, so I won't ask because I know it can't be let out of the bag. No, I'm hoping to go to Baltimore. And I still have it on my like, maybe it'll happen. You know, I've got it in the back of my head, like, maybe she'll clear me but I think she'd be hard pressed to clear me in time. I'd be surprised if she lets me out. But if she does, you know Maribel
There you go, it is gonna be a big old party in Baltimore, that is for sure. Because it's really our first in person event in almost two years.
I no more than that, really. More than that,
you know, it's just, it's, it's wild to think about all of the events that we typically have in person that we've had to postpone. And so I think, you know, zum zum has been great. And it's great to be it was a great way to stay connected. But I think we've all got zoom fatigue, and are just, you know, I'm looking to hug some people. I'm a hugger. So, you know, I've forewarned and anybody listening to this that, you know, doesn't know, like, I'm a hugger. If you don't know me, I'm hugging you anyway. So if you're coming to convention, be prepared,
be prepared? Well, I mean, if I can get the convention and give a Kelly hug, you know,
like, Oh, my goodness, like I just Oh, to see people and hug people and be in the same place together and celebrate all the wonderful things that are alpha, Sigma Alpha. I'm really excited for that component. And selfishly super excited that it's in Baltimore, and I can drive because it's like, maybe an hour and a half from my house. And it was
so brilliant. It's so brilliant. I mean, if I go I'm driving, I can't justify six hours. Like it's six hours. I can drive six hours. That's nothing I drive at Nicodemus Carolina. Six is nothing.
Well, and the best part of driving is you can stick whatever you want in your car. Like, who cares if it doesn't fit in the suitcase?
Exactly. Exactly. That's the best. Yes. So that's definitely the best. That is one.
Like truly that is one of the things that make me most excited about convention is that I can drive.
Right? And it's really round the corner for you in the grand scheme of things with all the travel you do with ESA, this is like here, you
Yes. So I am really looking forward to it. And Baltimore's going to be fun. So if we would love for you to join us, but if not, we will think about you and hope to see you in two years in the next city that we will announce at the end of convention. So it's not too far.
On bated breath. I shall be waited.
Yes, you have to wait. You know, if Jamie and Chris come up, you can tell them that they can text you where it's going to be when we announce it at the banquet.
Yes, that will be an imperative. They will they will be required to do so.
There you go.
I love it. So excited.
Me too. So Jen, thanks for spending some time with us today. And for sharing your story. I found it. It was fascinating. And I'm sure others will learn a thing or two from it as well. So thank you for for being willing to share that and be vulnerable with everyone.
Absolutely. Thank you for asking me and it's one of those things that you know, can be hard to talk about. But it's super important. And I love that I can share my story with others.
Yeah, I love that we've got this platform to be able to do so as well. So thank you and to our listeners until next time
Transcribed by https://otter.ai