Dr. Bob: Chelsea Berler is a friend, a successful entrepreneur, and author and an inspiration for many people. Tragically, she is also dying from breast cancer at the age of 34, but you won't hear Chelsea describe what she's going through as a tragedy and she certainly isn't a victim.
Dr. Bob: She has an amazing perspective on life and on death, which she shares with me during this interview. Anyone dealing with life challenges or has a loved one who is will certainly benefit from listening to Chelsea's heartfelt and loving words. As well as from the book that she recently published 'The Yellow House on the Left'. Listen in.
Dr. Bob: Looking at your picture, your Skype profile and it looks exactly like you, but I'm assuming that that's ... I wouldn't see all that flowing blonde hair.
Chelsea Berler: I look very different right now, I'd probably look like a teenager going through puberty because I am on some massive steroids and I'm getting hair where I haven't had hair before, and of course my hair's starting to grow back from the chemo. So I'm looking mighty, mighty different these days.
Dr. Bob: Yeah. Well, I imagine that that's just one of the many lessons, right?
Chelsea Berler: Absolutely.
Dr. Bob: To learn humility not get too attached to certain appearances.
Chelsea Berler: You're right.
Dr. Bob: Well Chelsea, thanks for reaching out. I mean we're having this conversation because you had reached out to me recently just to touch base and honestly, I didn't know that you were dealing with any of this. That was a big surprise to learn that you were on this journey and I appreciate it in the thing that stuck out what your phrase that you wrote was, I would love to see you do more with people that are directly in the path of your work.
Dr. Bob: Would you be willing to share a little bit about what that means to you? What's your thinking around wanting to connect with people who are directly in the path? What does that look like?
Chelsea Berler: You know, it was so interesting how it kind of came to be is, of course, we've been connected for years and had worked together in some capacity or the next, and we play in the same circle of really great people. You were on my mind the other day because I was ... One thing I've been spending a lot of time doing is listening to podcasts and one of the biggest reasons is, is because of my current state, I have this ringing in my ears pretty consistently.
Chelsea Berler: What helps is listening to something or listening to music or things of that sort, I was actually on the podcast app and just trying to search for a podcast that was inspirational, podcast about death and dying and all that. And I thought, "Oh, Bob has one." I went and looked up, and I started listening to all men. I really enjoyed them, and then I got to thinking, you know, it'd be so great to listen into other people's stories that are going through death and dying.
Chelsea Berler: I'm assuming, in some situations people often aren't in the mood to be sharing any stories or feeling good enough to do that, oh who knows, young or old. But I thought maybe there was, and maybe there was an opportunity for you to be able to add some of those stories, and I thought, oh, I would also love to share mine just because it's rather unique to in hopes that it will also help someone else that may be in that same situation looking for a podcast or trying to find something like that, that kind of helps them with the process as well. So that's kind of how I came to reach out and be like, "Hey, Bob!"
Dr. Bob: I'm so glad that you did and I'm so glad that you were open and that you're feeling up to doing it, I know that it's kind of day by day in terms of how that goes and so thank you. I spent a little time over the last couple of days reading some of your posts and the articles that you have on Huffington Post and just kind of getting more familiar with your journey.
Dr. Bob: So first of all, you're an amazing writer and I knew that before but I'm seeing a different style, and it's a different theme of course but your ability to express yourself and the pain of it, the wonder of it, all of it, just the full catastrophe in the middle of the night. So I appreciate that you're willing to share and I know that there are people who are benefiting from that, everything that you've put out there.
Dr. Bob: A lot of people just kind of shrink into their own world and don't want to contribute it anymore. Thank you for being somebody who's not doing that, who's continuing to shine your light out in the world despite the challenges that you're dealing with daily.
Chelsea Berler: Yeah, and something to piggyback off that and I know that we'll get into this story a bit, but I actually decided right when I found out I have been writing and so I have another book with that, it's going to be done this week, I'm having helped from a writer that actually helped me write my last one, and it's basically on death and dying. So in all the right ways and it was mostly because I had these Huffington Post articles that I never in a million years thought I would be dying from this cancer. We all were focusing on a cure, which was very much the what was going to happen.
Chelsea Berler: Since that didn't we pulled together these Huffington Post articles and wrote, she's been helping write this next book that will be out soon too, and I think that it'll be a really great contributor. It's going to be called 'The Yellow House on the Left,' so that'll be fun too. So I'll keep you posted on that.
Dr. Bob: When do you anticipate that it'll be available?
Chelsea Berler: I think that it'll go to print end of next week and then it'll be about two weeks until we can get that in our hands. We've been rocking and rolling on that, and I think it was just one of those things where I thought, it now is time to put all of these things into writing because I do think that there will be people that would be helped by these stories and my story and I wanted to get it out as quickly as I could, but I was like, "Gosh, could I actually make this happen?" Because day-to-day my challenges get worse for sure and so I think we'll make it.
Dr. Bob: Awesome. I can't wait in that, and I'm looking forward to seeing it and reading it, and of course trying to spread it, spread it out to those who will benefit from it.
Chelsea Berler: Thank you.
Dr. Bob: Why don't you tell listeners what's going on, what do you, what are you dealing with day-to-day right now?
Chelsea Berler: I turned 33 last year in March and my husband at that time was traveling every week to Europe for work, so he would spend basically Monday through Friday in London and Paris for work and then he comes home every week. That's been our life forever, he travels during the week, and we see each other on the weekends, and it's been lovely, that's the life that we love to live.
Chelsea Berler: He was traveling a lot, and so we decided I'd love to take a big trip and go to Europe, and in lieu of him having to come home for a couple of weeks and kind of see his life there, following him around, enjoy some time in Europe because I had never been, and so we were really excited about that.
Chelsea Berler: So came May, I flew over there, and I had the best trip of my life, it was truly so much fun. It was great to just see not only how busy, and crazy his life and lifestyle was over there–like the guy is like the energizer bunny–but it was just fun to just immerse yourself in another country for a while, and so we did that. That was a lot of fun. But I noticed while I was there, I was like, I could not keep up with him and to be honest, I can barely keep up with him and how like he does have high energy and I'm probably more chill.
Chelsea Berler: I just noticed I was really tired and I thought, it could be jet lag and the time difference. We were between London and Paris, so it's six, seven hours difference and maybe I was trying to kind of get used to it. Then when I got back, there was about a month in between where I was still really tired. But again, I just thought, maybe I wasn't eating well or whatever, and so I started working on a program with a friend [Christie Smear 00:10:26], you probably know her.
Dr. Bob: I do know her.
Chelsea Berler: Wells Fargo or The Wealthy Thought Leader can. Anyways, I started doing like a cleanse with her and like I was feeling really good, and my energy was a little backup, so I was excited about that. Then in July I noticed a lump in my armpit, and it literally like, just was like in my armpit and I thought, "Well, that's weird," I'm young, you know, at the time of 33 years old and so it didn't even phase me that it could be like something crazy, but I thought, "I'll get it checked out and see what's up."
Chelsea Berler: So I had just a regular gynecologist appointment that was already scheduled like my yearly exam because when you're 33, they don't have you do mammograms or anything until you're at least 40. I went in for it in end of July, I think, and she's like, "You know, it's probably nothing." Like she felt around, made sure everything looked okay. She's like, "This is probably just a lump that it's no big deal." So she said, but of course, we want to go ahead and by protocol and have them check it out, do an ultrasound on it, and maybe a biopsy just depending.
Chelsea Berler: I was like, "Yeah, no problem," so we weren't really quick on scheduling it. I think I had it scheduled like a week later and they did a biopsy, and when the doctor went in and did it, he said, "You know, I'm going to do a couple more." I didn't really think much of it. So he did a couple of different biopsies in that area, and then about a week later, the doctor called my gynecologist called and said, "Do you want to come in and talk about your results?" I was like, "That's weird. Can you just let me know, you know, what you found?" She said, "Well, it all came back cancer," and I said, "What does that mean? Like cancer? Like what?"
Chelsea Berler: She goes like, "I don't know, I can't interpret the results, but I need to put you in touch with an oncologist that you can meet with to discuss the outcome." At that point, I just broke down in tears, and I handed the phone to my husband who was drifting fully, and he had, of course, a lot of questions. "Can you give us more ..." I don't know anything other than these biopsies tested positive for cancer and she didn't know too much about the type or whatever.
Chelsea Berler: We ended up connecting with, so she gave us a referral for an oncologist, and so it was a week after that, that we were to meet them. So we, of course, were like for an entire week, knew nothing other than we just have to meet with this doctor and we'd go to meet with her, and there was actually, we live in the Gulf of Mexico, and there was a hurricane before that ended up not hitting us. But of course when something like that happens, everything closes, and we didn't even think two thinks about it. So we went to the doctor's office, and there's a big sign that says they're closed.
Chelsea Berler: The day we were supposed to figure out what was going on, we were standing in front of the doctor's office with like, "Sorry, hurricane happened last night. We're not open today." We came back home, and we were just like, this is the worst feeling in the world to know like someone found cancer and you hang, don't know anything about it and you can't get into the doctor.
Chelsea Berler: The next morning we called of course and said we had an appointment, it looks like yeah, we're closed. No one called us. And they said, "Well, come in today at 4:00," because we basically begged them like, "Can someone just tell us what's going on at this point?" That was kind of a frustrating moment because it just felt like we were in limbo a bit for a couple of weeks.
Chelsea Berler: Finally we met with her that next day at 4:00. She is amazing; we have the best oncologist ever. Basically, she sat there and said, "Tell me what you know so far so I can fill in the gaps." She told us that I would test it positive for triple negative breast cancer, and she wanted to go ahead and do all the genetic testing and figure out this type of cancer and rate it and all of that. She couldn't do that until we did like a full PET Scan and did all of the more specific test to kind of understand what we were dealing with.
Chelsea Berler: We went ahead and did a pretty extensive genetic testing that all came back negative. Thankfully, because I also have several sisters, a mom, it had been impacted, so we know that I didn't have it genetically. Thankfully that was great. But it also stumped us because she said, for me being so young and we're having triple negative, it's awfully confusing how one like me would get something like this.
Chelsea Berler: Then the other thing was we went ahead and did the PET Scan, and it looked to be pretty severe. One thing about triple negative breast cancer is it's a pretty aggressive cancer. Triple-negative breast cancer is probably the hardest one I think to combat a bit because it's not hormonal based and a lot of people like that I did chemo with were much older than me and all hormonal based breast cancer.
Chelsea Berler: We were kind of dealing with that from both ends, but we ended up having the PET Scan, and everything, and she called it initially early stage 3C, but basically I'm stage four because I could have done clinical trials and all of this other stuff. We basically classified as stage for triple negative breast cancer at the time.
Dr. Bob: Where else was it in addition to the lump that they had biopsied in the breast, where else at that point?
Chelsea Berler: It was in my lymph nodes or is in my lymph nodes in my armpit, and then also we saw activity above the clavicle, and it was pretty tiny activity above the clavicle. They felt really confident in my care because we could do a double mastectomy although it was only in one breast, I told them right away I was like, if we're taking one, take it both. What we were going to do, the plan was is to do six months of chemo to shrink everything, and we felt really confident about that, and then we wanted to do a double mastectomy, remove the lymph nodes and then the rest of the tiny activity we saw above the clavicle we wanted to hit with radiation, and so I had a team of a surgeon, the oncologist, and the radiologist, and we all got together, they all were like super confident, like kick this.
Chelsea Berler: We did the six months of chemo, I started that in September and not only did it go well, I mean I was sick as a dog and it was awful, but it went so well that when we met with our surgeon, because we were meeting with our surgeons several times, like once a month we would go in and get a mammogram and check everything and see how things are progressing. This last time when I was finishing chemo, not only did the tumors shrink so much that she said, "You don't even need a mastectomy anymore, I can do a lumpectomy and remove everything." She felt so confident, and our surgeon is amazing, she's like in her early, I think she's in her early 70's, she has seen it all it's just like, well-recommended around here are amazing.
Chelsea Berler: She was just like so confident, like don't worry about thing, I think let's do a lumpectomy. We left that appointment thinking, "Holy crap, this is amazing," and they were raving about how amazing chemo is in that situation because should I have not want the chemo away we would be removing all kinds of things trying to get this cancer out.
Chelsea Berler: Anyway, so my last mammogram I did was December or January. No, wait, February. That was when my last chemo was February 14th actually Valentine's Day. We did that last mammogram, and we got to go in and see it, she's like, "Come and look at this." She literally put like the pictures of the mammogram, but there was never a moment that we talked about, it was so tiny for a moment. We're excited. We had to talk about death or dying, because it wasn't even on this entire journey, because no one has been talking about that potentially happen.
Chelsea Berler: There was never a moment where we talked about this could kill me, there was never a moment where we had to talk about death or dying because it wasn't even on the table. Like there was no one talking about that as being something that could potentially happen because the plan and what they were working with they just felt really confident about it.
Dr. Bob: That's really interesting. I wonder if you were 73 instead of 33 if that conversation would have been different.
Chelsea Berler: Yeah. Maybe. Maybe I had a lot of issues through the chemotherapy process like my white blood count was ... I was struggling a lot, so I ended up having to skip several chemos, and so they called me this unicorn. They were like, you know how you meet people and like for example, you hear a herd of horses, and you know their horses, you hear, you can hear what they sound like, right? But then you look back, and there are horses, but there's one unicorn. This unicorn that's not quite fitting in any pot, and so I was basically a bit of a problem child for them from the start when it came to even the chemo process because of course I'm with all these other patients that are going through this process, and mostly they're going through the way they need to be going through it.
Chelsea Berler: I felt like almost every time I would go I would have these issues of like not being able to get chemo or being too weak or whatever. I'm like, "I'm the youngest one here by like a lot." Like I would say the next person in line in terms of age was probably in their 50's that I was with, so I was like, "Why is the young person, am I having so many problems?" I got through it, and it was so successful that we were also a bit surprised because we were worried that it wouldn't be because of the issues that I had been having.
Chelsea Berler: My tumors and lymph nodes are shrunk so much that it was just amazing. At that point we scheduled surgery, so we have to wait at least four weeks after your last chemo to have surgery, so I think we scheduled it for like five and a half weeks after that. I had my birthday March 13th, I turned 34, and two days after that I got put in the hospital because ... A week prior I started getting these really weird headaches, and they would come on for about five minutes, and they would be just extremely painful for like five minutes, almost like I was having a contraction in my head, and then it would eat often go away.
Chelsea Berler: It would happen like almost 10 times a day, and I was feeling like I kept saying to people like, I'm having these weird headaches, I'm having these weird headaches. I was telling the doctor, and she said, it could be, or coming off of chemo. It could be then the anxiety I was kinda having from going through this for the last six months, we couldn't quite put our finger on it. But because as a cancer patient you're always high priority and may want to make sure they're running every test possible.
Chelsea Berler: She's like, "Let's do an MRI. Let's make sure nothing's going on in there. Let's scan your brain, whatever." I did a couple of MRIs; nothing showed up. I did an MRV, nothing showed up, and I was beginning to be really frustrated because everyone kept saying to me like, we can't find anything. I started feeling a little crazy like something is not right, I don't get headaches. I've never been someone to get headaches ever in my life.
Chelsea Berler: To be honest, I've been a very healthy person my whole life, not ever breaking a bone or having any major issues but they couldn't quite figure it out. We went and saw a neurologist and just to meet with them, and of course he looks at me and he's like, "I don't know what's wrong with you," but basically our last resort, I talked to oncologist, and we're going to do a spinal tap and see if anything comes up.
Chelsea Berler: He said, "It probably doesn't, and it's probably something that's causing some issues. It could be from coming off the chemo, we don't know, but everyone's kind of like give it some time." They had put me on some medicine right away just to try and help with the headaches; I think they might've put me on steroids right away. I did the spinal tap, and it was a Friday morning, so it was basically two days after my 34th birthday, and the neurologist actually called me and said, "I need to check you into the emergency room, the hospital, because it's possible you might have fungal meningitis."
Chelsea Berler: They weren't entirely sure, but they were sending off a pathology report, but it came back with what they had so far until they could have someone else read it that it could be fungal meningitis. He said, "That's something that you have to be really careful of." So come in, and I didn't really think too thinks about it. But that morning my husband, my stepson plays for Mizzou, and he was playing in Louisiana, and I was encouraging my husband to fly to Louisiana for the day and night to see him play baseball because I've been sick, we've missed so many of his ballgames.
Chelsea Berler: I was like, I'm fine. We've been doing all these tests to figure out these headaches. I'll go do this by tap, like no biggie. Please go, you know, so I spent the day with my mom, thank goodness she's local here, so I get to see her every day. So she came with me, it was no big deal. We came home, the neurologist called and said, "Come in, we need to check you in."
Chelsea Berler: I didn't think anything of it, so we get checked in the hospital, and everyone's wearing masks, and I'm realizing, oh, so they think like if I have this meningitis that it could spread. Like I didn't know much about fungal meningitis.
Dr. Bob: Not many people do–don't feel bad. It's not something the general population knows much about.
Chelsea Berler: It was so weird, and so I realized that when we pulled in to the hospital to the emergency area, the neurologist came out and met us and brought us in and so then I thought, "Oh, so this might be kind of a big deal." I called my husband. I was like, "Listen, I'm okay and fine and good. I want you to go to this game." He just landed in Louisiana, he had flown there, and he's like, "Heck no. I'm turning around and coming back." He literally walked off the plane, walk down another one and started flying home.
Chelsea Berler: At this time we got checked into the hospital, everyone's wearing mask, they had to put these like, and mind you, this is the first time I've ever been in a hospital bed before. I've never been in an ER, nothing like that.
Dr. Bob: Even through all of this, even throughout the treatments and everything. You never ended up in that ER, that's wonderful.
Chelsea Berler: That was definitely one thing I never ever had to do, but they had to pad each side of the bed just in case I had a seizure because they said, "This is fungal meningitis, that's pus," I'm like, this is blowing my mind right now. But no one's really telling us anything other than that, and with my Google searches, I'm like, "Okay, so if I have this meningitis, okay, we'll figure this out, whatever."
Chelsea Berler: I got there, it was probably about 2:00 when we checked in, and we spent, of course, all day there, and we didn't hear back from the doctor. She's waiting on this pathology report, same with a neurologist. So we haven't heard anything other than they're giving me some steroids, they're just making me comfortable, they're helping with my headaches and my mom, and I just hung out there.
Chelsea Berler: Finally, we took over a mask because we were like, "Oh, we can't even breathe through these things," and mom's like, "If you have it, I already have it because I've been with you." We just kinda chilled out and Mark, my husband arrived around 5:30, so he comes in, and we're still sitting there visiting and then, of course, my doctor comes in. I was surprised to see her because it was, gosh, it was late, it was after dinner time I think. I was thinking, "Well, I'll probably just see her in the morning because it's so late."
Chelsea Berler: Well anyways, I think what really happened was she found out the results of my spinal tap, which was that the cancer spread to my brain and spinal fluid and that was causing these massive headaches. She, I think was, to be honest with you, heartbroken and I think it was hard for her to come visit us at the hospital because she came in and she normally is like all done up, and she's just amazing, and she had no makeup on. You could tell she had been crying.
Chelsea Berler: She leaned over, and she had the mask on, and she said, "I'm taking this off because you don't have fungal meningitis. I'm pretty sure you don't have fungal meningitis, and I can't talk through it." She took off her mask, and she was explaining what they call LC to us, which is where the cancer spreads to your spinal and brain fluid. It was that moment where, of course, my husband had a million questions, and I'm sitting there like, "What is happening?"
Chelsea Berler: My mom, she does a little laid on top of me, like a hen and just wanted to just lay on me and she was of course crying, and I was crying, and I wasn't really processing like what she was saying. The doctor was crying, and finally, Mark said to her, "Can we step outside?" Because I think he was just, I have so many questions, and I think he wanted to understand what was going on before they could finish talking to me about it. I told them to of course go out and talk about it, he and the doctor and so he did and kind of learned what this LC is and what to expect and what that means.
Chelsea Berler: That was literally the first point where we were like, wow, like, so there's no option, this is terminal. We were shocked that especially given the news that we had just gotten.
Dr. Bob: Yeah, a little incredible roller coaster that you had to be hanging onto.
Chelsea Berler: Yeah. I mean and surgery was scheduled for that Friday, so we were actually going to have surgery that Friday. It literally happened like we just found out before that, and I think it's like this, the LC is like a two percent chance, super rare, super crazy. Again, you hear a herd of horses; you think they're all horses and there's one unicorn that's me that just has never really quite made sense through this whole process.
Dr. Bob: Chelsea, that was just like six weeks ago?
Chelsea Berler: Yeah, so my birthday was March 13th, I was in the hospital March 15th is when we found out. Yeah, I think. It was just recently.
Dr. Bob: LC is the actual name for it, it's leptomeningeal carcinomatosis, and I think there's another name called neoplastic meningitis and essentially it's when tumor has gotten through that barrier, through the blood-brain barrier and it's around the brain and the different, the little sheets that cover the brain and the spinal cord. I imagined what they saw in that spinal tap was a lot of protein and a lot of things that didn't belong there and probably some cells, the cancer cells and that might've just really confused them so they couldn't quite figure out what to make of it at first.
Dr. Bob: Wow. What's it? You went from like totally thrilled that all the struggle that you had gone through with the chemotherapy and all of that was worth it. You were now looking at the next phase which was a surgery, and you know feeling hopeful about having eaten this. Then a few days later you're given the news that it's terminal and there's no cure.
Chelsea Berler: Yeah, it's crazy. It was really interesting and as I've been writing this book, reflecting on the whole process again, just like going through it, knowing that there was that here like we were all very much like a focus on that. There was never this like other option or other like that this could kill you. It was, of course, surprising, to say the least, but also it's one of those things that I think about too, and know that nothing is promised. Your life isn't promised and your days aren't promised, and no one said you're going to live to be 100 or 90 or whatever the case might be.
Chelsea Berler: I think people assume, of course, we all assume we'll have a big long life, but the reality is, that's not the case. The more I thought about it, the more I thought I've had such an amazing life, I have done such amazing things. I got to live as long as I could, and I continued to, and I'm so thankful for that. I think that it's really opened my eyes even more so to just a life well lived and sharing that with people, knowing that your tomorrow is never promised and the next day isn't either.
Chelsea Berler: For people that walk around thinking that they're going to live a long life, I hope they do but knowing that ... that's not the case, sometimes for people and it's not for me. So really reflecting on the time I still have left, it has been fun, to say the least in terms of just living each day, however, I want to live it and no restrictions right now. I have been eating a lot of pizza rolls, and that's been fun. Pop tarts, I bring it back to pop tart.
Dr. Bob: I think it's good as they used to be.
Chelsea Berler: Funny story is I thought to myself, what are some things that I remember as a child that I just love so much that I've refrained from, from so many years because I've eaten healthy because I wanted to be a really healthy person. Of course, when I was a teenager I ate all that junk food and I thought, there are these things that I really wanted to eat like lucky charms.
Chelsea Berler: Then, of course, I wanted to get some pop tarts and Oreos and things like that. I was showing my husband, there are things that we're transitioning to him like how to order groceries online to make his life easier, so I've been showing him those types of things, and it's kind of dangerous because now that I'm on steroids too, [inaudible 00:38:09]. So I'm always ordering groceries.
Dr. Bob: Do you have Uber Eats by you?
Chelsea Berler: We do, but we have not used it, I should set that up. I ordered pop tarts, and I was so excited, and I sat down, and I opened the first one, and I started eating it. I had toasted the first one, and I was like, "Gosh, this doesn't near as good as I thought it was going to be," like I was really excited about it. And then I thought it was a little bit of a Debbie Downer; I was like, this I thought used to be so much better.
Chelsea Berler: As I started eating them then I was like, "Okay, they're kind of delicious." Yeah, I've been doing that in divulging a bit in food, but you know it's funny because you think about those things and you refrain from so many things because you want to be healthier, to be better, to be good at it. I think that absolutely we should all be healthier and not be eating pop tarts.
Dr. Bob: Every day at least.
Chelsea Berler: Exactly, but I do think that, as humans, we need to enjoy the simple delegacies of life and not refrain from too much because I think there's so much happiness and little silly things like that, that I think can bring someone great joy just even in little morsel, even a little chocolate here and there, whatever. But it brings me back to those things that I think, gosh, I didn't, I have a pop tart if I wanted a pop tart. I think more people should probably have that mindset with things these days because again, you just don't know what could happen. I mean, you can go from one extreme to the next.
Chelsea Berler: The other thing that I am so fortunate about is there are so many tragedies in life. There were people die suddenly and quickly, and you can't say goodbye, you can't prepare. They're just gone. I am so thankful that I have this time with my family, my close friends. I have been so enjoying being able to reconnect with people and share things with people and talk about memories and all of those things.
Chelsea Berler: I'm also in that place of a great deal of peace, being able to have peace with people and have this time with the LC diagnosis. It can be weeks; it could potentially be months. We actually stopped treatment; we were doing spinal taps where we were doing chemo in my spine and then chemo pills. But none of that is proven to be effective, it could possibly be effective in terms of lengthening my life maybe a little bit, but it was actually causing a great deal of pain.
Chelsea Berler: The spinal taps were really painful for me because I have a lot of inflammation. We were spending three out of five days at the hospital between doctors' appointments and the treatments. We decided to stop everything about a week ago just because it was just like, this is not how I want to spend my time.
Dr. Bob: And that happens, I think it happens so frequently as people or they continue on this path because that's what's recommended and there's no other option, and this is sort of direct or directed down this path with uncertainty, there's a very uncertain benefit and likely not a great benefit, but what's definite is that you are giving up your time, the time that you have the precious time that you have with your family and your friends and the piece of just being able to stay in the environment that's comforting to you and to ...
Dr. Bob: I honor you for making that decision, and I imagine that has given you some additional sense of peace of not being back in that world.
Chelsea Berler: It's been good. My husband and I discussed it at great detail because we basically asked the question to the doctor if I continue to do these treatments, is there a greater than 50% chance that they're working or less than 50% chance they're working? She said, "Less than 50% chance," and she's like, "I'm not even sure they're doing anything," and because this LC is so rare that it's basically, she's basically saying, "Let's just try it and see if it extends your life," and I was just like, "Let's just stop."
Dr. Bob: Let's just not, yeah.
Chelsea Berler: She was really cool about it, she's been just amazing at like, "What do you guys want at this point?" I was so sick of taking so many pills and all of that that I was just like, I'm throwing in the towel. Especially, I mean if there were ... if she could prove to us that it was helping clearly I'd want to extend my life but of course not. I've noticed, daily I am declining just in little things like my legs aren't working as great as they should be working and stuff like that.
Chelsea Berler: We started hospice this week, but mostly it's we decided to do that because I want to be as independent as possible in our home while I can. So getting the help that I need with walkers or things like that to be able to continue to get around as much as I can. Between my mom and my husband, of course, they're taking care of us or taking care of me, so I don't need the nurse and the CNA here or anything like that right now.
Chelsea Berler: Being able to have their help just with this advice and stuff around the house has been really great. We started that process, which has been really amazing by the way, that kind of care. I think more than anything like just being able to decide how I want to spend today and whether that be, this interview or listening to podcasts or reading something or my husband has been taking me for drives, and that's been fun just to get out.
Chelsea Berler: I get tired pretty quickly, but being able to just get out and get some sun on my face has been awesome but just choosing how I want to spend that time is really important I think for anyone probably in this situation.
Dr. Bob: Yeah. I imagine your husband has working less, kind of, at this point, spending more time with you.
Chelsea Berler: Actually, when we found out in September of my diagnosis he stopped traveling completely, he has just been working from home, and he works with such an amazing company that has just been supporting him and like you do whatever you need to do, work from home, whatever. So he's actually been home full time, and that's been amazing, and we've both been trying to ... I own my company, and so I've been working as much as I can, we're working on transitioning it to someone that's been with me for seven years.
Chelsea Berler: That is my heart, and he's taking over my company, and I'm going to be running it going forward in that has been so amazing, so I've been helping with that and just doing as much as I can during the day to get him set. When all that's good and finished, he's good to go. My husband's been trying to live, a bit of a normal life I guess, if you will, just I'm encouraging him to do a little bit of work in the morning, and while we can, I think that it's good to feel human in that way.
Chelsea Berler: But we've been spending a lot of really great quality time together where we talk about the best conversations that we've just never had to talk about before, like death and dying. About an afterlife, about spirituality and it's, of course, deepened our relationship together and having those conversations, things that some people probably have them I'd assume, but I guess we just had never talked a lot about it.
Chelsea Berler: He's older than I am and so in my head I always thought that I would be his caregiver and take care of him and of course everything's changed, and so now I'm worried about leaving him because there's so many things he doesn't know about, just household stuff and add order groceries and dog food that we have on auto pay, those kinds of things that I've been working really hard to make sure he is set because I worry about him because he hasn't had to really manage those things.
Dr. Bob: That's really sweet of you, you worried about him.
Chelsea Berler: I always thought in my head that, I love being a caregiver for and I'm a very compassionate person, and so I just always like to take care of people, of other people, and I never thought that it would be people taking care of me, I guess. It's been a little bit hard to get used to that, but he has done an amazing job. I can't imagine going through something like this with anyone else, and it's really interesting how you look at a relationship when something like this happens and how things changed in such a dramatic way and how you're cared for and how amazing he's been as a husband all these years that we've been together. But just how he has to take care of a dying wife now.
Chelsea Berler: He has just been so phenomenal and amazing, I can't imagine doing it with anyone else. So one thing that was really important to me when I first started this process was when I was going into this chemo room is one thing that was super shocking was, there was a lot of people that didn't have insurance, almost everyone. There was a lot of people that didn't have anyone with them. There were a lot of people that didn't have any kind of supplies like I had, meaning when I first found out I had cancer, I had this outpouring of love and support of people sending me things like lotions and beanies and bath soaps and like all these healing things to get me through. Like, "Oh my gosh, my friend or family member just found out they have cancer, like what can I do?"
Chelsea Berler: I was getting all of this stuff, and it was so much stuff that it was great, it was like books and coloring books and things to pass the time because when you go to chemo you're there like almost six hours sometimes just not only waiting for your drugs but then getting your drugs and it like it's just such a process. I felt like I would walk in there with, Mark would come with me every single time, he sits with me the whole time. I would come in with a bag of this stuff that I could use playing cards and like I said, books and coloring books and things that would just help me get through this process.
Chelsea Berler: As I was looking around, I was heartbroken because no one ... like I literally, I felt like I was the only one that had it, it really did, and it broke my heart because how many people a day are going through this and having to sit there every day. I thought to myself, there's got to be something that I could do to help these people. I thought, I'm going to take all this stuff that was given to me that I had extras of which was a ton, and I'm just going to bring it all in here and ask the nurses if I can just put it on this back shelf and anyone can have it, whatever they want.
Chelsea Berler: I asked him, and I said, "Great, absolutely bring it in," and so I literally just dumped out a ton of stuff that I had extra stuff. The end of that day it was all gone, everything that in like the women that are in there, of course, are bald, and some of them didn't have beanies and some of them, you know, I just don't have anything.
Chelsea Berler: Then it got me thinking, like there are all these really great nonprofits that help raise money for research and help do this or that within the cancer funding foundations, but there isn't that I know of a place where you can go where you can get support meaning these types of things that help you pass the time, and there isn't a place where you can do it for free. I mean, you have to buy it, or someone is going to buy it for you.
Chelsea Berler: I thought, I am going to start a nonprofit where it'll be based on donation, and I'm going to put together bags of things, I'm going to curate them based off of what I used. Every single thing in what we're calling a blue bag because blue is, I feel like more adequate than pink, it is stuff that I have personally used. Like things like oatmeal that it was really all that I could eat for a while, ginger candies helped with nausea, the coloring books, the reading books, the warm socks, the lotions, the bath soaps, all of those things that I personally use that I know used, that I used well.
Chelsea Berler: I put these bags together, and I thought, I don't know how this is going to go. I don't know if people will understand it but I'm going to start this blue big movement, and I am going to allow people to request them if they want to request them on their own, and like for themselves if they're going through cancer treatment, or someone can request for them, and we'll ship them. Because my business is web design, we were able to put up a website. I was able to curate these products, design a bag that it's really amazing.
Chelsea Berler: I was like, "Okay, we're gonna do this, we're going to police together," and the donations just started coming in. I think we're probably at about $50,000 that we've raised, and that's not even corporate donations, that's literally personal community people we've known like it's been amazing. We've been able to ship these blue bags all around the world, they've gone to the UK, they've gone to the US.
Chelsea Berler: We just shipped some time to Honolulu, there's a map that for bell.org where you can see where the blue bags have gone so far. It's been amazing, and it's also very sad because there are so many people that are going through this process that need this kind of support and we get to ship these out for free, and it is awesome.
Chelsea Berler: What we're doing right now as we're transitioning the foundation, so my husband is going to run it when I'm gone, and I have a really great group of people here that friends and family that they help curate and put these blue bags together every month. What we try and do is do 50 at a time, we probably will start doing 100 at a time because it's going so well. It's a lot of work and so what we have to do right now is, we make enough, and then people request them on the website and then you have to take the request form down when we run out so we can make more. We're kind of trying to get into the rhythm of that. It's been amazing; it's been so awesome.
Dr. Bob: That is incredible. I mean, with all the other things that you've got going on in your life to have been to have the wherewithal. The desire to create something to help other people just truly speaks to the depth of who you are. So that's incredible, so there'll be a link on our website, integratedmdcare.com/newsite1 where people can get access to this podcast. We'll also have a link to bell.org so that they can go in and get on and see how they can contribute or request a bag for someone who they know that would benefit from it. That is just, wow, Chelsea, you're awesome, and it does sound like you have lived about three lifetimes and your short 30, 40 years.
Chelsea Berler: I know, it's like a cat, right?
Dr. Bob: I mean you've shared a lot of obviously from some very, very deep and personal, intimate things and you'd given, I know some of your wisdom that that's come to you and through you, anything that you feel is just kind of needing to bubble out before we say for this particular episode?
Chelsea Berler: I think more than anything I appreciate you taking the time and understanding why that maybe this would be helpful for others to include in your podcast. Just having the being one that's going through the dying process and being at peace with it and being in a good place with it, I think is really great. I think that part of that is just knowing that life is short and I hope that people will really take tune to know that life, live a little harder, live a little bigger, live a little more fierce, and eat a pop tart if you want to eat a pop tart.
Chelsea Berler: I think those are all really important pieces to living a good life and not worrying so much about saving all your money and maybe take more trips and have more memories, and maybe less things and more good stuff that you can add to your life that will just add to those sweet memories that you can keep a hold of. I think all that's really important. Just as a takeaway for it, for anyone that thinks they have a long life to live, which I hope they do. I hope they live each day as if it were their last because I think that that's important.
Dr. Bob: No doubt. Awesome. Well, thank you again, and I'm so glad that we're reconnected, and I'm hoping that we can use the time that you have left to continue to add value and stay connected and promote your book and the nonprofit, and you're amazing. I knew you were amazing before. Now I see an entirely a whole other realm of amazing in you. So thank you for being you and for sharing you.
Chelsea Berler: Thank you. I appreciate it very much. I adore and love you and your work, and I think that what you do is so important. So thank you for that.