DESCRIPTION:
Elise Roth Tedeschi has been free of Stage IV Pancreatic Cancer since October 2012, but her journey was quite difficult, which she shares on this episode of the Cancer Interviews podcast. After noticing pain in her back, a CT scan revealed a 7cm tumor. She underwent a needle biopsy, then an endoscopic biopsy, after which a PET scan showed she had Stage IV Pancreatic Cancer. Elise had a port inserted, then underwent 12 rounds of folfirinox chemotherapy. Eventually a PET scan revealed there was no longer an active cancer in the tumor. She had one remaining procedure, and that was the removal of her gall bladder through a Nano-Knife procedure. Elise went into remission in October 2012, and while there are some things she cannot eat, Elise leads a productive life with her husband and two sons.
An active career woman from Smyrna, GerogiElise enjoyed normal health until until 2011 when she started to experience massive back pain and said her stomach felt like it was “on fire.” She sought medical attention, and tests showed she had a slightly bulging disc. A subsequent CT scan revealed Elise had a large, 7cm tumor in her pancreas. From a PET scan and a celiac plexis block, doctors told her she had Stage IV pancreatic cancer. The pain was so bad, she couldn’t eat.
Elise told her husband of her diagnosis, then scheduled a conference call to inform her family. She later had to engage in a private conversation with her husband to discuss the possibility of her death and how it would affect her two teenage sons.
She had a port inserted and underwent 12 rounds of folfirinox chemotherapy. In addition to the side effects associated with chemo, Elise’s dropped to 89 pounds. Elise was told for one diagnosed with Stage IV pancreatic cancer, the survival rate was like one percent, but was encouraged to learn that after six rounds of the chemotherapy, scans showed her tumor had shrunk in half. After the twelfth round, the tumor was still there, but it had shrunk some more.
Then in October, 2012, another PET scan was run and Elise Roth Tedeschi was told that while the tumor, it was no longer active. Doctors decided against a Whipple procedure, but proceeded with what was a state-of-the-art procedure called Nano-Knife. Her gall bladder was removed, and the procedure shocks the cells in what was left of her tumor. She then had her port removed, and continued with a pill form of chemotherapy. That, and the Nano-Knife completely dissolved Elise’s tumor.
Elise still gets scans every six months, but has defied the odds, being in remission since October 2012. She says she has had to make minor challenges, but her day-to-day life is very close to what it was prior to her diagnosis.
Additional Resources:
Pancreatic Cancer Action Network: https://www.pancan.org
TRANSCRIPTION:
Jim Foster: Hello, and welcome to the Cancer Interview podcast, where we are sharing the cancer journey together. On today’s program, we have an incredible guest with us whose story will hopefully provide a great deal of information, encouragement and inspiration. She is the mother of two boys, a wife, a writer, a publicist, marketer, public speaker, and advocate, as well as a Stage IV pancreatic cancer survivor, and is joining us today from her home in Smyrna, Georgia, just outside of Atlanta. Please join me in welcoming Elise Tedeschi to the show. Elise, welcome to Cancer Interviews.
Elise Tedeschi: Thanks, Jim. I am really excited to be on your show.
JF: Thank you so much for being here and taking time out of your busy day to be with us, and if you’re ready, let’s get right to it. Sound good?
ET: Sounds great.
JF: Awesome. So, Elise, before we get into the details of your cancer journey, why don’t you take a few moments to tell us about yourself, like where you’re from, what your life was like, what your interests were, and a little about your family prior to your cancer experience.
ET: Sure. I grew up in Florida, but I think I have been in Atlanta for about 25 years now. I am married to my husband, Patrick. We have been married 19 years, we got married on St. Patrick’s Day. Neither of us are Irish, but we figured that would be a fun day to get married. So, I have two boys. They are 14 and 16, Jake and Ryan, and also, I have been a career woman most of my life. I think stay-at-home moms are amazing, and I think it is much harder to stay at home than go to work, but right before my diagnosis, I was traveling a ton for work. I am in marketing and PR, and at the time I was doing sales as well. I was traveling all the time, and actually in a lot of pain. I love to be really busy and am really close to my family. I have three siblings. I guess that’s me in a nutshell.
JF: What was your overall health like in your years prior to your diagnosis?
ET: Pretty normal. I never really had any health issues. I was really good about getting checkups and all that sort of thing. When I was in my early thirties, my sister was eleven years older than me and she had been diagnosed with breast cancer, and I remembered everything she had gone through and she actually did not have to do chemo, but she had a mastectomy and then another mastectomy, but I remember thinking at the time, gosh, I hope I never get cancer because I am going to be really bad at that, but I was always really healthy and active and never had any issues. I got through my pregnancies easy, so no issues, ever.
JF: Other than your sister, was there a history of cancer in your family, and if so, what was that like?
ET: At the time when my sister got diagnosed, she was the first person in my family to get diagnosed with cancer. I mean, it was kind of a shock because if you know my sister, she is incredibly healthy. My brothers and I would joke with her, saying you should have eaten more fast food or something. I mean, how is it possible my sister, who is so healthy, could possibly get cancer? At this point, she was really the only one. Then fast forward a little bit. My uncle had lung cancer, but that was more tied to his being a smoker, and so we really didn’t think much of that. We thought we wouldn’t get cancer because it isn’t in our family.
JF: What caused you to think something might be physically wrong with you? Any symptoms?
ET: It was almost six years earlier, I remember that I was speaking in front of all the bigwigs with the company I was with at the time, and I remember that my stomach was in knots, that I was a mess and I remember this weird, tingling feeling in my back. I didn’t think anything of it, I would get it every so often, this little pain in my mid-back, and I really wouldn’t think anything of it. In 2011, my husband and I and my kids, we’d all gone to Boston, all over Cape Cod and Martha’s Vineyard, and during that trip, I just remember, I was having massive, massive back pain and my stomach was a mess. I remember thinking my stomach feels like it’s on fire. At the time I was trying to figure out what’s going on. I was in a lot of pain, and it woke me up. So, we went to a walk-in clinic, we went to a chiropractor, and I remember when we went to the walk-in clinic, they had done a couple tests. What is so interesting is, they did bloodwork and all sorts of things, and everything looked normal. I thought maybe I had had a kidney infection or something, because that is sorta where the pain was. Then they said we should do an MRI, so they do an MRI, and they said I have something in my liver, but it’s definitely not cancer. I cannot see your pancreas because it is so far back there, so we really can’t see your pancreas, but everything looks okay, and that was it. I think I took a lot of pain medication, and I left, and we ended our trip. So, when we got back to Atlanta, I kept asking my doctor about this pain I keep getting in my mid-back and my stomach is bothering me and she kept saying she thought I had an ulcer and that I should take a lot of Advil. So, she decided to do an MRI, which indicated that I had a slightly bulging disc in my back. That’s when she sent me to an orthopedist, who agreed that I have a slightly bulging disc, but doesn’t know why it is hurting me so much. So, I end up getting an epidural in my back to ease the pain. Everyone I spoke to said it will be life-changing, and that I will feel so much better. So, none of this helped. I remember honestly that orthopedist made me feel like I just wanted drugs from him, and that was the last thing I wanted because I was working a lot; but the pain got worse and worse, and then I really started to drop weight, then I was seeing every doctor on the planet. I saw chiropractors, I saw natural homeopathic doctors, I saw an acupuncturist, because here I am thinking I have a back issue. Then I started seeing a pain management doctor. After two or three attempts at doing additional shots in my back for the pain to go away, shots which didn’t work, the doctor said, “I really think you have a gut issue going on, not a back issue,” because they say sometimes that your back radiates your stomach and your stomach radiates your back. At that point I decided to switch internal medicine doctors, and have to give praise to my doctor, Dr. Craig Peters, he’s amazing, but the first thing he did was tell me I was way too young to have this kind of back problem without having a real serious injury. He also said he was going to do a CT scan. We’re going to figure out what’s going on. So, the CT scan comes back, and I have a very, very large mass on or near my pancreas. I remember telling him I was flying out the next morning for a meeting, and he says I am not flying out, that instead, I will be seeing this surgical oncologist. The oncologist told me I had a very large tumor, measuring around seven centimeters, and he needed to run some tests. At that point, they were not certain that it was pancreatic cancer.
JF: So, you had quite a long journey to get an accurate diagnosis. So how much time had elapsed between your trip to New England and learning about the tumor?
ET: Probably about six or seven months. And the pain! I had had two boys, two C-sections, but I would prefer having fifty kids over the pain with this tumor. It was so intense. I was taking Advil two or three times a day because that would sort of ease the pain. I bought every gadget possible because I was thinking I have a back issue. People have experienced pancreatitis, and that’s what this was like. It was just awful.
JF: What was the next step in the quest for the underlying cause of the pain?
ET: Next up was a needle biopsy. It was way back there. If you go to a cancer hospital, they will tell you not to get a needle biopsy because it is not an accurate test. The needle biopsy showed that the tumor was benign, but you have to remember, if the test was going through so many things, it is quite possible they didn’t get a real tissue sample. Then they did an endoscopic biopsy, where they actually put you out and they try to extract cells from the affected area. After that, the doctor said they were atypical cells, but he could not rule out cancer, and the next step he wanted to do was surgery. This was right around December 2011, and I asked if he was going to be there after this surgery to let me know what’s going on. He said he wouldn’t be around because he would be out of town for Christmas. Luckily, I have an amazing sister who went through breast cancer, and she directed me to a cancer hospital where they specialize in all this stuff. I will tell anyone going through cancer, find the very best doctor you can, because there is so much new information out there. We actually went to an NCI-designated hospital, which means it’s the National Cancer Institute, which means they have to do so many hours of research. They’re always up with everything that’s going on, which I think is really important. So, we go there, and it is January 5, 2012. We had to go to Moffit Cancer Center in Tampa, which is where my sister was treated for breast cancer. She had a lot of confidence in them. They are a part of, and right next to, University of South Florida. So, we go there, and we have all these doctors. We probably had at least four doctors in the room, medical oncologists, radiation oncologists, surgical oncologists, some other doctor that knew my sister, plus my sister and me. The first thing they said was they knew I was looking for a diagnosis. My sister was able to get all my scans sent to them in advance, plus the previously-done tissue biopsy. Now all this is going in front of cancer doctors who see this every single day. They said based on what we’d sent them and having it looked at by a group of doctors, that I had locally advanced pancreatic cancer. I kept thinking in my head it was something weird I had. The previous surgeon had said whatever cancer I have was inoperable because the tumor is wrapped around an artery rendering the tumor inoperable. So, I was super shocked. One of the doctors said you are probably Braca 2+, which could be a good thing. It could have been what gave you this pancreatic cancer but can also be what takes it away. But they wanted to do more tests. I had not done a PET scan. So, with their state-of-the-art equipment I did another CT scan, and I did a PET scan. That’s when it was determined that I was actually Stage IV. I had several lesions in my liver and I had some spots in my lungs and spots in my chest. They weren’t totally positive whether it was cancer or not, but the first place that pancreatic cancer spreads to is your liver and a lot of times, your lungs. First, they decided to deal with my pain, which at that point made me miserable. So, they did what called a celiac plexus block, where they put you under and take what amounts to rubbing alcohol on your pancreatic nerves to deaden the nerves, and it’s temporary. The pain was so bad that it got to the point, in which I couldn’t even eat because I was in a lot of pain. I didn’t want food and I was miserable.
JF: Following the diagnosis, when did you have a chance to tell your husband, and once you did, how did your family react?
ET: First up was talking to my husband, and I needed to have my sister with me. I don’t remember much about that conversation, as I think my sister did most of the talking. I do remember they eventually had a conference call with my family. That included my mom and dad, my sister, my two brothers, their wives, their kids, not my kids, because they had just turned six and eight. Everyone’s on the phone. At this point I was thinking it had not spread, so I told them it was locally advanced, meaning it had not spread anywhere. Meanwhile I think my sister knew it was Stage IV. My mother was hysterical on the phone, crying. It was one of the hardest conversations that you have with your family. I know that anytime anyone says pancreatic cancer, people think death is near. It was definitely really, really tough. We are a really close family. My brother, Todd, told me I was going to beat this, but I knew it was a shock to everyone, including myself. I asked my doctor how long did I have to live, and he said most people in your condition don’t survive longer than nine months. I was just trying to wrap my head around what I was trying to deal with. Then again, I said to myself if anyone is going to beat this, it is going to be me, because I am not leaving my boys. I was super determined. Upon flying back to Atlanta, that ride home with my husband was so hard for us because I actually asked him, “What are you going to do if I die?” He said maybe the boys and I would move closer to my parents. It was the hardest conversation I’d ever had. You don’t ever expect to have that kind of conversation with your husband, so that was super difficult.
JF: At this point, the tests in Florida were done, but you still didn’t know what your staging was, or your treatment plan was yet. Did you pursue any other options?
ET: My doctor at Moffit, said I could get chemo done in Atlanta. So, I found a doctor in Atlanta, and she didn’t specialize in pancreatic cancer, but she was young and eager and willing to work with my doctor in Tampa. This is how I found out I was Stage IV. She showed me my CT scan and said I had cancer in my liver, then showed me the spots in my chest and lungs. I asked her if she thought I was going to die from this, and she said I probably would. I said I didn’t understand because my doctor at Moffit indicated I was Stage III, and I told her she needed to talk to my doctor at Moffit. I just to myself, “God give me some hope, I just need a little bit of hope.” Then she came back, said she spoken to my doctor at Moffit, and that I would be treated as if I were Stage III, and there would be no difference in my treatment plan, but psychologically, she knew it would make a difference for me. Now I had some hope, so here we go. I got my port put in. From there I started what’s called folfirinox chemo. There are four drugs in this chemo. This sort of chemo had come out in 2011. There were only like one or two drugs out there. It is sad that in January 2012, there just wasn’t a whole lot of new research. Every round of infusion, every round of chemo that I had was a little bit different. I remember with the first one I was shaking, that my husband had to feed me, the side effects weren’t great, but I didn’t know any better, either. Thank God I did not vomit. I got very, very thin from chemo, got down to 89 pounds at one point. I am 5’3”, so back then I could wear my eight-year-old’s clothes back then if I wanted. I did twelve rounds of this chemo. Chemo does have this cumulative effect. One of them was neuropathy, where you get this tingling sensation, your fingers and your toes. I am a high-heeled kind of girl and I had to wear tennis shoes pretty much all through it, but I got through it. I always say one thing that was good for me, was that I likened the chemo to scrubbing bubbles, scrubbing all that cancer away.
JF: So, when you started your chemo treatment was that pretty much the only treatment available or did you have options?
ET: My options were doing the chemo I did, or another chemo that had been around for years that didn’t have a good survival rate, so at the time, the survival rate for pancreatic cancer, and this was 2012, those that survive more than five years was right around five percent, and for Stage IV, it was around one percent. So, at that time, not very good odds, but I thought someone has got to be in that one percent. One thing that was a big part of my journey was my faith. So many things happen in that sense, and I felt this incredible sense of peace about going through this. I was never a religious person. I grew up Jewish. That’s a big part of my journey, my faith journey. I would say I felt like the whole time that it was like God tapping on my shoulder. I told my husband I have this incredible peace. Deep down, I know I am going to be okay, and my husband he was so glad I said that because he said that’s how he felt. Even when you are going through this very difficult situation, in which more likely than not you won’t survive, I just remember thinking my kids are going to have good memories about me, no matter what, whether this goes south or not. I have got to make great memories for my kids, and every day I got up and went to work, and worked all through chemo, which most people think is totally crazy, but I tried to live my life. I don’t think anyone wants to sit around and think, “Oh, I have cancer.” No, I wanted to live my life.
JF: So, your faith gave you the strength you needed to remain positive and to maintain an optimistic outlook and live your life with your family, through the process.
ET: I would also say I had this army of cheerleaders, of angels, of prayer warriors, my family was amazing. I am from this tight, close-knit family and I never imagined that our family would become closer, but we got closer. My brothers, my sisters-in-law, my parents, kind of moved in with us for a while. There was always someone in my home, and it really wasn’t like I needed them to perform certain tasks, watch after the kids, cook dinner, I mean, my husband is insanely talented in that area. He’ll cook dinner, put the kids to bed, that stuff. People would do all sorts of things. It was amazing. People would bring food to us. One friend would take my kids where they needed to go, and that was super, super helpful, because they were little. As I got through chemo, I got weaker and weaker. Even though I did as much as I could, I was still pretty weak.
JF: I am sure that meant a lot at the time and would mean more to your kids with the passage of time. Now, as or your treatments, were they all in the Atlanta area or did you have to do any more traveling?
ET: I had done six rounds of chemo, then I went back to Tampa to do scans, and they found that my tumor, my seven-centimeter tumor had almost shrunk in half. It was pretty unbelievable. So, I was doing very well with chemo. Meanwhile, my sister, who was my medical advocate, but also my “nag,” because she would always be asking me about what I was eating, was it the right thing, stuff like that. It was valuable what she did for me, clearly someone I trust with my life, who is a lawyer by trade, but just decided to learn everything she could about pancreatic cancer, the new research, etc. So, after I had gone through six rounds, she said we should get another opinion to see if we are on the right track. I think we are on the right track, but let’s just go see. So, we jumped on a plane and went to a big daddy of cancer hospitals. You have got to find a doctor willing to fight for you. The doctor who saw us does this exam, it was kind of weird, but whatever. I told him I was Braca 2+, and there were all these studies that showed the chemo I was on, it was just more sensitive with people who are Braca 2+, but he said he didn’t care about that, which was kind of weird to me because I realized that doctors know they know. He did say to me that my doctor was crazy to give me six more rounds of this chemotherapy. He told me I will not be able to walk, I will not be able to dress your kids, at the end of the day, I am going to die from this anyway, so he would rather give me a less aggressive chemo to give me a better quality of life until I die. I am a very chatty person, but I was speechless. I think he wanted to be transparent, this is what he knew, this is what the statistics would day. I think sometimes we are brought up to not question what our doctors say or do, right? I mean, they are the authority, they have gone to school for this, they’re incredibly smart, but they don’t know everything. I do think that power, that will to live, is a huge thing, and my sister, who sees things as very black and white, told him, “Well, you don’t know my sister,” and he said, “Well, you don’t know this cancer,” and I remember thinking, “Really?” So, we got back on the plane, and I said I was not going back to see him. After I returned, he said he wanted to be the ‘quarterback’ of my care, and I thought, “Are you kidding me?” And I thought he is not a winning coach! Sadly, they take out the human piece out of it, and I don’t want a doctor telling me, it is all going to be butterflies. I want someone being realistic, but I want someone being optimistic and saying we’re on the right track.
JF: Sounds like you moved on from that doctor. So, what was the next step?
ET: I did finish six more rounds of chemo, and I could walk, and I could dress my kids. I wanted to send that other doc a video of my doing a dance, just to let him know that he didn’t know me. So, after that, I went back to Tampa, and they said they wanted to take me off the chemo and do what’s called stereotactic radiation and they do five chemo pumps, which meant I was going to do it for five weeks for twenty minutes Monday through Friday every day, Monday through Friday have a chemo pump of one of those drugs. I did that for five weeks, so I actually went to Tampa and stayed there for five weeks. It was sorta summer for the kids, so the kids got to spend a lot of that time with me, family came there, I had amazing family friends that actually let us use their condo and it was amazing.
JF: And that was outpatient, or did you have to be in the hospital for some of that?
ET: I could actually drive myself there, so I would just drive there every day. You have a set time that you go, do it for twenty minutes, then you go home. For me, the side effects were way less. It does make you really tired and the more rounds I had of it, the more tired I got, but again, the side effects were really manageable. I was still really, really thin and my doctors were telling me to eat whatever I could eat, so I had ice cream every night. Meanwhile, my tumor, which had already shrunk, shrunk a little bit more, but it was still there. The chemo had taken all the cancer out of my liver. Some spots in my lung were still there and some went away. They thought the ones that went away were cancerous. At that point, I was told they would stop with the radiation and the chemo, and I felt like I was no longer fighting the cancer. I was afraid the cancer might come back. It was a super emotional month. I had a friend who was going through cancer at the same time and during that month, she passed away. It hit me incredibly hard because I felt we were the same positive people, we both had young kids, and I remember talking to her husband, hearing him say life would be so hard going through it without her. It really put me in a bad place. I had pretty much stayed in a good place during my chemo. I am a really positive person, so I stayed positive. That’s what I chose. When I went down a negative path, nobody liked me. I didn’t like me. That time where my friend passed away, I cried for like three days straight. Her husband told me I had to snap out of this, and my kids were wondering why I was doing so much crying, and I told them I was just so sad, sad for ‘us’, my friend and I, and I wondering if this would be my reality. That’s when I started wondering if I would see them graduate elementary school, and it was super tough. But I eventually got through it. There was a night in which my husband had an event, and I cried and prayed and cried and prayed until I fell asleep. That next morning, whether religious or not, I think prayers can be answered because I woke up that next day and I felt like every burden had been lifted off me. I looked at my husband and said I’m okay, I had really good dreams and I know I am going to be okay. I think he was really happy to see that I wasn’t crying anymore. The next thing I said was, “I don’t think I have cancer anymore. I know I just said that, but that’s how I feel.” I went in for a scan two weeks later, and the first scan I went to and felt like I was okay. I really thinking to myself that I don’t care what the doctor says. If he told me things had gotten worse, then I would just say, “Whatever.” I just knew in my heart of hearts that I was going to be okay. So, it was a PET scan and CT scan, and it takes a long time, and I had the luxury of getting to know my results the same day. My doctor comes in and said my PET scan came back and nothing lit up in your PET scan, so I had no active cancer. I could not believe it. I was hoping for some good news, but I wasn’t expecting that kind of good news. He said the tumor was still there. It is inoperable, but it is not active. It is like a dead ball of cancer. The whole thing about long term survival of pancreatic cancer is that you get a Whipple procedure, where they take out all of the cancer, they replump you and that’s the thing to give you long term survival. It was not an option for me because the tumor was wrapped around a major artery, and trust me, there were doctors willing to do that type of surgery.
JF: So, looking back, how did it feel to get that great news?
ET: It was like the dream that you have been waiting for. It’s like you have hit the lottery. Certainly, with cancer you can have some seriously low, low days. You can start reading the statistics. I had a couple people offer me to plan my funeral. I know it came from a ‘lovie’ place, but I wasn’t ready for that, and when I got this news, I was like, the talk of the hospital, this was the biggest miracle they had ever seen. Here I was, against all odds, but I do think there is this huge mind/body connection because I was in this mode of ‘I’m not leaving my boys.’ It was the most incredible day. My parents were actually watching our kids here in Atlanta, and my mom said about my news, “I’d better be the first call.” Of course, she was. She and my dad were outside as the kids were playing, she had me on speaker phone, and I said, “Mom, I have no cancer,” and she was crying tears of joy. And my neighbor heard, and she was hugging my boys.
JF: A lot of our listeners wonder if they go through chemo if they are going to lose their hair. Was this part of your experience?
ET: My hair is long, and I have always worn it long. My doctor said to me that my hair will thin out, but it shouldn’t all fall out. It always depends on the chemotherapy. I did become thin and when I finished chemo, my husband who is tall, looked down and noticed two bald spots on the back of my head and told me about them. My hair looked bad. A girlfriend who had gone through cancer, she gave me her wigs, so now I was thinking about shaving my head, but I cried about it. I also lost all my eyelashes, and without your eyelashes, you look buggy, and I hated that. In a way, I hated losing my eyelashes more than I hated losing my hair. Anyway, I cut off my hair by myself in a day and I shaved it and did it by myself. It was a bit empowering, like I’m doing it, the chemo isn’t doing it, I’m doing it. I had told my kids about it, that that was what I was going to do, and when they came home, I had my super fabulous wig on, and they were like, ‘okay,’ and then they wanted to see me without my wig. So, I took it off, and asked them what they thought. Now my husband is shaved bald. One of my sons said, “I think you look good, but dad looks better bald.” My other son said, “I think you look beautiful with or without hair.” Some people told me I have a really nice head. For me, I think if it would have happened at the beginning of my journey, that would been harder because I was already going through so much change. Because it happened near the end of the major chemo, it was tolerable. I felt strength from other people, but I never wanted anyone to feel sorry for me. I hated that. We were in Tampa for a weekend, we were on a boat, and it was incredibly hot, and I remember having this wig on my head. It was so hot, the wigs are incredibly hot, but I remember thinking, I am not taking this off because I don’t want people feeling sorry for me.
JF: Your hair has obviously grown back, but reflecting on your chemo, what about your tastebuds and your appetite?
ET: Incredibly, throughout my journey I had a pretty good appetite. I got to a point with the ninth or tenth chemo treatment that everything tasted horrible. It was strange. Everything white tasted horrible. Pizza, grilled cheese, anything with white bread, white anything. They always tell you to not have dairy, but dairy was the only thing that tasted any good. One of the side effects from the chemo I was doing was that you would get mouth sores. So, when I first started getting metallic mouth, somebody said I should start eating candy, which was a big mistake. Candy started ruining the chemistry within my mouth, turning almost my entire mouth into one big mouth sore. That was one of the lowest points of my chemo. My husband that weekend he wanted to do a beach trip, so we actually went to Taibe Island in Georgia, and I stayed in bed the entire weekend. I don’t think I have ever felt so sick and so weak. There were other people that went with us, I remember thinking I bet they think I am going to die this weekend. I didn’t feel like I was going to die, but everything tasted bad and with the mouth sores, any particle in my mouth felt weird in my mouth, so I had to have no particles. And then there is stuff called Magic Mouthwash, which is truly magical. That helped me get through that, but that was a pretty low point. Then I learned if I washed my tongue with baking soda and salt before I ate, and used not a metal fork, but a plastic fork that that helped a little bit. That said, with pancreatic cancer, there are some things I can’t eat just because my body can’t take it, but that’s kinda my new normal.
JF: You were told the cancer was in remission. But were there any relapses?
ET: My doctor was really hesitant to say the word ‘remission.’ However, I had had all this treatment, and I hadn’t had surgery, there was still this tumor, even though it wasn’t active cancer. I actually did a cutting-edge surgery at University of Louisville in Kentucky. They do this procedure called ‘NanoKnife.’ They cannot physically cut out the tumor, so the ‘nano knife’ is actually a knife at all. So, they did a full zipper cut. The realized they couldn’t do a Whipple procedure, so they removed my gall bladder because it had been destroyed with all the radiation and chemo. It was actually two probes that go into the tumor and what it does is, it shocks the tumor, shocks the cells within the tumor. The cells get holes poked in them because of the shock. The procedure doesn’t touch the artery, so it just touches the tumor and some cells around it, and your body rejuvenates healthy cells. It did exactly what it was supposed to do. They do have trials going on with it, with the NanoKnife. I was the doctor’s 75th NanoKnife patient, but he was the number one guy in the country doing these surgeries. The surgery was super tough. It was just as invasive as a full Whipple. They put a feeding tube in me. You also have an NG tube taking the fluid out of your stomach. It was not pleasant at all. It was very painful, too, and I remember thinking ‘tomorrow is going to be better, tomorrow is going to better.’ I was probably in the hospital maybe about two weeks. So, I had that in November of 2012, and I got to be home by the time it was Thanksgiving, so it took a bit to recover because if you think about the stomach, that area is very sensitive, so it did take a while to recover. When I got back home, I still had that feeding tube in there, but I never really used it. I felt like that hurt more than my incision hurt. I told my doctor, and he said the tube is long enough, I could pull it out myself. They told me to bend my knees, then my dad pulled it out. I have never been shot, but I felt like that’s what it must feel like to get shot. It was really painful, but it didn’t really bleed. It was okay, but then I started vomiting to no end. My parents were planning on leaving the next day, but I asked them to stay, so they stayed one more day, then they left. That following day, there was bleeding on the kitchen floor, and I realized, it was me. I was bleeding from where the feeding tube was. I pushed on the area, and something green comes out, and I thought this is not good. I decided to lay down, I could feel this infection and now I am sick. My husband and I went to the emergency room, and I was back in the hospital for a week.
JF: This on the heels of your being in the hospital for two weeks.
ET: So, heavy, heavy antibiotics. They even did a blood transfusion. It was crazy, but I got through it. I knew at least that it wasn’t cancer. All my siblings were saying to my sister that she needed to fly to Atlanta right away. I was so out of it, it was so painful, and they pump you up with a lot of drugs. My husband is juggling the kids and going to work.
JF: But the stomach infection cleared up. Was that the end of your treatments, your hospitalization?
ET: After that, they wanted me to a ‘post chemo.’ Prior to that, I told my doctor I am getting my port taken out, against his wishes. He said I needed to keep it in for the next two years. I told him I wanted it out because psychologically I needed it to be out, and if we have to put it back in, then we will put it back in, but I need it to be out. I am done with all this. Post-surgery, I knew they wanted to put me on sort of a maintenance chemo, just to make sure. So, they gave me the pill version of an earlier procedure. The pill version was different because you are taking big dosages of it different times of the day, and it is not like this slow and steady pump that is going into you. Probably in hindsight I should have kept the pump, but I just really wanted to be done with it. So, I took the pill, and it had almost different side effects. It made my hands completely peel. My feet were constantly peeling. Meanwhile, I was continuing to travel for work, and when I traveled, I would wear these gloves because my hands were just a wreck, and someone said it must be cold wherever I flew in from.
JF: Did hand lotion help?
ET: No, I think the peeling was more internal in nature. I tried every lotion on the planet. Some are better than others, but even now, I have lotion on my hands every day. Actually, some of those designed for diabetics, help. I was on this pill for about four months, and I had to check with my doctor and at this point, I had a scan in January, and I had another one in April, and the tumor was completely gone, exactly what the nano knife was supposed to do, which was basically dissolve the tumor.
JF: So, it was gone?
ET: It was gone. That’s when I told the doctor I wanted to discontinue the pill regimen. At that point, I was still getting checkups every three months. They do bloodwork, CT scan, with contrast. When I hit that two-year mark of being sort of cancer free, my doctor would always tell me no one is actually cancer free, everyone has cancer cells in their body, but I thought I was cancer free. Now, the two-year mark for pancreatic cancer is like the five-year mark for other types of cancer, and two years out, I have less and less chance of a recurrence. I still get scans every six months, and as of October 2020, I will have been in remission eight years.
JF: That’s great. Do you do anything to celebrate your anniversary of going into remission?
ET: I think helping people is the greatest gift I can give anyone. I remember thinking when I first got diagnosed with this, I was a director at my company, I was the go-to person for marketing issues, PR issues, and I remember thinking then that I don’t want cancer to be my brand. I was really funny about it. It is not my brand but is who I am in the sense that I think being a survivor is sort of my brand. Like now, I know that helping people is the greatest gift that I can give to myself and to other people, so that has become my brand and I am super passionate about it and I unfortunately have lost too many fellow warriors going through pancreatic cancer that I was close to, and a lot of them have lost their lives and that’s really, really hard, but one thing I have seen is that survivor rates have gone up tremendously. The overall statistic for pancreatic cancer now is up to ten percent.
JF: At this stage, what is your day-to-day life like after all that you went through?
ET: I feel like I am still very much the same person, but I do look at things differently, and I encourage others battling pancreatic cancer to get through it. I don’t ever feel that I lost my life, lost who I was because, even when going through cancer, I tried to live my life and be with my family. I am super close to my two sons. I do look at things differently and sometimes I might get stressed out with my kids about grades or whatever, and pushing them, pushing them, then I tell myself to take a step back. To me, their character, who they are and how they are to other people is important.
JF: You mentioned earlier that you like to write. What can you tell us about your writing?
ET: All throughout my journey I was pretty transparent on Facebook, and I would talk about what was going on, and I felt like I had this incredible amount of friends that were following me and following on the journey, and so many people would say to me, I know we haven’t talked in a while, but I have been following your journey and it so inspirational. I know I am in a good place when I am writing. I got my degree in Journalism, but I never thought I would become a writer. I have been writing here and there, but I have been working on a book about my journey because there are so many pieces of it that were hard to believe but did happen. There are so many avenues of it that when you are given this incredibly grim diagnosis, I think there is always hope. I was saying before that faith was such a huge part of my journey, and I think that is one thing that is probably different in myself since going through chemo. Faith, to me, it is about having your own relationship with your God, and it is more of that personal relationship in a sense rather than going to church and saying that’s why I am a Christian. For me, I think I would be the last person on Earth to become a Christian, but I see God for all the great things, and I think the one thing I always live by is that the plans we have for ourselves are one thing, but the plans God has for us are much bigger than we could ever imagine. So, there’s this inscription, Jeremiah 29:11, which I live by. I am not going to tell you what it is, but you should look it up. It is sort of about God having a future for you, and I live by that, like kind of my mantra, and whether I survive or not, I tell you, as I go through my journey, and some of the worst days of my life in a sense, a lot of those days were still incredible. I know it sounds crazy, but that year of my life was the most amazing year, even going through cancer, I would wake up with such joy truly bursting out of the seams. I know it sounds like unicorns and rainbows, but I think if you really dig deep, I think God can give you that peace, that love, that assurance, whatever it is. Had I actually died during the treatment I would think that I lived what I needed to live. For instance, my boys always knew that no matter what, that I loved them. So, I am so thankful that I get to be here today and can encourage others, and be a mom to my two teenage boys, a wife to my husband, so I think that I really see the important things in life.
JF: It sounds like you have a lot of good material and perspective to put into your writing.
ET: You can follow me on Instagram if you want. I am EliseintheATL, and my website is elisetedeschi.com. I am also involved with PANcan, the Pancreatic Cancer Action Network, and I am the co-chair of the Atlanta affiliate. If you know anyone facing pancreatic cancer, please tell them about PANcan.org. They have amazing, amazing services for patients, and that’s what sets them apart, so from a patient standpoint, they will find you a doctor, they will find you another survivor to talk to, if you are a caregiver, they’ll find you a caregiver to talk to. They will do free molecular testing of your tumor, which is showing to be the most important thing with beating pancreatic cancer now. Also, they find the makeup of that tumor, and determine which chemotherapies work the best in killing your particular cancer or tumor. That program is called Know Your Tumor. Another program is called Precision Promise. They have teamed up with hospitals around the country to do really cutting-edge trials and they have FDA support and approval with all of these, and that’s a huge thing because a lot of times, people will go on a trial and it is usually required that they go on this drug for ‘x’ amount of time, and they can’t do anything else. This program allows people to change their medication. Also, for pancreatic cancer research, seventy percent of the funding comes from federal funding, so even the Department of Defense is now funding pancreatic cancer research and it is a direct correlation with increased funding. One thing that PANcan does is, if you have lost a loved one from pancreatic cancer and if you feel helpless and you can’t do anything, you can join in on their advocacy day. They raise funds and they raise a lot of funds, and they are pretty much the go-to. I mean, there are a lot of organizations, but having the patient services PANcan provides is so crucial, so again, it’s PANcan.org.
JF: Sounds like you are very involved. The way I found out about was you with in an article in the Pancreatic Cancer News, which was part of the PANcan.org website. Another article they posted about you concerned an open letter you had written to Alex Trebek from the TV show, “Jeopardy,” after he was diagnosed with Stage IV pancreatic cancer as well. What can you tell us about that?
ET: I’ll never forget the day Alex Trebek announced on television that he had Stage IV pancreatic cancer. That day I probably got fifty messages from friends, texts, phone calls, and they said I needed to find a way to get in touch with Alex Trebek, how to figure it out. I do PR, so I have a group on Facebook that know a lot of people. So, I reached out to them and asked if any of them knew Alex Trebek. I am a Stage IV pancreatic cancer survivor and would love to do anything to help him. I honestly thought it would be amazing if I got to talk to him to let him know there are Stage IV survivors out there. One of the people I reached out to, she was the editor of DailyMeal.com, and said if you write an open letter to Alex, I will publish it, and I said that would be great. It took three hours in the middle of the night, but I got the letter to her. She made one correction, then posted it on her website. Then MSN picked it up, then it seemed like every news organization on the planet picked it up. My phone was blowing up and I was granting interviews. It was really amazing. I don’t know if Alex Trebek actually read it, but I think if nothing else, it created increased awareness about pancreatic cancer. He has been so transparent about his journey. He had different side effects than I had, and I think it’s important. Usually you hear about someone having pancreatic cancer after they have passed away.
JF: I am sure that letter was a big help to Alex and to others who are struggling with the disease.
ET: You never plan for cancer to be part of the plan, but literally it was part of the plan. You never know how strong you are going to be when going through something like this. I remember thinking we are not going to do well with that, but so many things in my life gave me so much strength. The people, you see the beauty in people and that’s one thing that is just amazing.
JF: Sounds like you have had a tremendous network of support, the roles that each of them played in your caregiving and am so happy that you have been able to come through this and continue to give to others based on experiences you have gone through. Any other advice you want to share?
ET: I have a laundry list that I like to share. Number one, make sure you get second and third opinions. Now, with telehealth, that can make it easier to get second and third opinions. Next, I would say have someone you are close to be your medical advocate because when you are going through chemo, you are not really thinking entirely straight. You need someone who is super objective, someone who can take notes, write down questions that you have prior to an appointment. Also, the chemo nurses know everything, they know how to best deal with side effects. As a caregiver, if you see an opportunity to do something for your friend, just do it. You can also help your friend by about talking about any phase of the journey. If they don’t want to talk about it, that’s okay, too. When you are going through cancer, you just want that normalcy so much. Oh, and don’t offer to plan someone’s funeral. That’s not a good idea.
JF: Finally, if you were speaking to one person about your cancer journey, what would you share with them?
ET: I would say that you are stronger than you think, and you have to remember, statistics are just that. They are just numbers. You always have to believe that you are a statistic of one because your experience is not going to be like someone else’s experience. Someone else may not have survived, but that is someone else, and that is not you. You never know how tough you are. I mean, if I can beat Stage IV inoperable pancreatic cancer, I think anyone can beat it. Find the right doctors, find the doctors willing to fight for you. Then build your army of friends and family, and you know what the other thing is, I would very much be in the mode of ‘let people in,’ because cancer can be a very, very lonely place if you shut people out, so let people in, people want to help. You can beat it!
JF: Thanks for those words of wisdom. I am sure our listeners have learned a great deal from what you have to say. I know I have. We are very appreciative.
ET: Thank you for having me and thank you for your show. I think everybody needs to hear that.
JF: We hope lots of people will be able to hear your story as they go along their cancer journey. So, for everyone listening, please leave your comments below and take a look at the description and Show Notes with all of the links to the valuable information that Elise has shared with us today, and if you have found this information helpful, please consider subscribing to our YouTube channel and wherever you get your podcasts, and remember, you are not alone. We are all in this together and we care about you very much and we wish you the very best possible outcome in your cancer journey. So, until next time, please take care and we will see you on down the road.
SHOW NOTES:
TITLE: Elise Roth Tedeschi, Stage Four Pancreatic Cancer Survivor – Smyrna, Georgia, USA
Elise Roth Tedeschi has been free of Stage IV Pancreatic Cancer since October 2012, but her journey was quite difficult.
After noticing pain in her back, a CT scan revealed a 7cm tumor. She underwent a needle biopsy, then an endoscopic biopsy, after which a PET scan showed she had Stage IV Pancreatic Cancer. Elise had a port inserted, then underwent 12 rounds of folfirinox chemotherapy. Eventually, a PET scan revealed there was no longer active cancer in the tumor. She had one remaining procedure, and that was the removal of her gall bladder through a Nano-Knife procedure.
She went into remission in October 2012, and while there are some things she cannot eat, Elise leads a fruitful life with her husband and two sons.
Additional Resources:
Pancreatic Cancer Action Network
Time Stamps:
0:05:29 When Elise first felt something might be wrong.
0:14:00 Underwent needle biopsy.
0:23:48 Elise told her family she had Stage IV Pancreatic Cancer.
0:29:25 Treatment options.
0:42:45 Chemo shrunk Elise’s 7cm tumor.
0:55:19 PET scan revealed no active cancer.
1:01:09 Dealing w/hair loss and skin issues.
1:06:33 During chemo, Elise still had a healthy appetite.
1:10:54 Had gall bladder removed through a Nano-Knife procedure.
1:25:01 Describes how she deals with day-to-day life.
KEYWORDS (Tags):
bulging disc
surgical oncologist
pancreatitis
needle biopsy
endoscopic biopsy
chemotherapy
celius plexus block
locally advanced pancreatic cancer
folfirinox chemotherapy
neuropathy
braca 2+
stereotactic radiation
nano knife
whipple procedure
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