4. Post-Chemo, Survivor's Guilt, and Complete Remission

Jason: Welcome back to the Moe Chronicles navigating pancreatic cancer. This final episode picks up with Mo as she finishes her chemotherapy and has an unexpected series of events just when she felt that she was turning a corner in her battle with pancreatic cancer. Here we go. So this episode is about chemo is just finished. This is October 21st, October 21st or 22nd, 2014. This is the post chemo phase of your pancreatic cancer saga. And it didn't go as planned at this point. From what you've told me, you kind of thought, Hey, I get to October 21st  successfully. And I finished up my last chemo treatment. Everything's great. I'm back to normal, but it didn't go that way. 

Mo: So, so I had my last chemo, October 21st, 2014. You never forget that day. just as your Whipple date, you never forget. and yeah, I thought, okay. I have a week. It has to get out of my system. Okay.

Jason: A week, a week, one week. Okay. 

Mo: So the following week I thought I don't really feel any different. Okay. The hair's not back and I was still wearing the wig. Yeah. Which was kind of interesting because I would sit with the wig in my house next to my, sofa. And if the doorbell rang. I just plopped the way down and go and answer it. But, you know, it's interesting that because to wear it in the house is so uncomfortable. It's warm. Yeah. It's warm. But anyway, yeah, so nothing's really changing. You think your hair is going to start coming back. It's going to be looking really good and everything's going to be, you're feeling better, better, better. It doesn't happen that way. It literally took me almost six months for me to be back with. But I called normal 

Jason: because I've read about this. I call it the chemo hangover. 

Mo: I did not even know that. I 

Jason: don't know if that's a medical term, 

Mo: very good term, 

Jason: but they describe it as the chemo hangover 

Mo: just in one month longer than the actual, the chemo 

Jason: six months was your chemo hangover, which is probably helpful for people that are about to go through those patients and family members not to expect that life gets better physically. No. As soon as your last chemo finished 

Mo: emotionally, it does. And, and, and certainly with the, the hair growing back, that's probably. 

Jason: And how long did that take? 

Mo: I wore the wig for quite a while. I remember not wearing the wig and in may of 2015 and the hair came back, as it often does very differently. Came back real curly in the front and, But it did come back gray. It came back. gray. So I had it. Then I had the opportunity to make the decision but you know, you think to yourself, should I just let it be white and be a QTIP and be happy? But I thought, no, 

Jason: But you've  never been that way.

Mo: No, but, and I thought, and someday I will do that, but I thought, you know, let me just get back. Post chemo feel good physically, and then I'll deal with it. What color my hair is, because I think picture of life, that's not important. So, but that curliness went away, you know, I thought, Oh, I'm going to have a different luck. Yeah, no. 

Jason: So that's seven months before you stopped wearing the wig after chemo ended. 

Mo: Right. I stopped wearing the wig about, probably March or April and the hair came in so that you look okay, 

Jason: so four or five, yeah, right after chemo. So that's helpful to know that in your case, that's my case. And so, so that was the hair, rand then, but the physical six months, not feeling good, so emotionally feeling better, but physically still 

Mo: feeling it the way it is with the chemo, but not the energy you expect to feel energetic. You feel to be, you feel to have, you want to have that strength in your arms. And I remember noticing that I didn't have strength in my arms and legs like I used to. And I remember thinking that that that was not concerning, but you know, I forget what month? Somewhere in there. winter, I was making the bed and I heard snap in my back. Okay. 

Jason: So you're making the bed, 

Mo: making the bed 

Jason: and you hear a snap in you back 

Mo: heard, snap, in my back. Okay. So I always went back to dr. Harris because nothing, everything went through your oncologist he recommends doctors. And it turned out that I had a fracture and, and from the back, and also a subsequent fracture from prior that I didn't even know I had. So they sent me up, for, injections. I call them concrete. I'm sure they're not. t hat gave some relief. Then I went on to, I still had back issues, Jason, and, Now, remember my life is fairly sedentary, so I was willing to live with quite a bit of discomfort before I would, you know, mention anything. But they sent me right in the Florida cancer. They had a, a physician that, handled Side effects from chemo and specifically, bone issues. And she did a remarkable job. She gave me injections in my hips, my right hip, mostly cause that was the biggest issue, 

Jason: pain management medication. 

Mo: yes, it must never be that kind of stuff that she did, which was miraculous for the moment. It would wear off. And so, and I'm not sure if I just got used to it, the discomfort or, it, it didn't impede my lifestyle, but I did do a lot of follow up with her. And then I did physical therapy for several months. I did physical therapy because, and I, you know, you never know what works and you don't know, did. I finally, I was far enough away from my last chemo things got better. Yeah. Was this, the injections? Was it the concrete? Was it the medications, whatever, where it was, you know, you don't know what to give credit, but you do know that someday at one point you say, you know, I'm Okay. 

Jason: Now, in addition to the fractures in your back or in your vertebrae, if that weren't enough, you had hernias from, from the Whipple surgery, which is just to give people context, you know, they open you up, you know, North to South on your torso and then, you know, put incisions, you know, make incisions so that your, your muscular, your abdominal wall has a, a big cut and they cut through it North to South. And they obviously spread you apart, do the things that they need to do to your plumbing, as you said, and everything, and then they put you back together, but that muscle is very good at stretching itself or contracting so that it, it, it leaves a, a gap basically, you know, if you're not careful. And so take me through the hernias that developed as a result of the Whipple 

Mo: hernia is developed and they were, two of them, two football sized. So these are major, not small, not small hernias. 

Jason: These are holes in your abdominal wall 

Mo: there, or think of them as balloons, 

Jason: balloons, 

Mo: you know? So, weakening, 

Jason: weakening your inner to start to push out. 

Mo: Right? Exactly. would, would I have died from them? No. Okay. But recommendation was made by dr. Harris to have them repaired. He recommended it. 

Jason: That doesn't seem so good to have a football sized balloon of your skin with your innards pushing to get comfortable, but like an alien type look. 

Mo: So, but then again, you just buy a bigger blouse. It's not a big deal out of it. Yeah. 

Jason: I have these two huge protrusions  coming out of your abdominal wall. 

Mo: they 

Jason: say, you should probably get this. 

Mo: he recommended it. He said, and it was uncomfortable. Yeah. And there was some risk, I guess. So he recommended it at that point. You'd do whatever your oncologist. And he said, he indicated it was not going to be a major event, 

this is not 

Jason: Whipple surgery. This is not cancer. This is, A physical carpentry, 

Mo: this was mechanical, mechanical, just mechanical. 

Jason: And for you, that must have been that's nothing. It has nothing mechanical. I'll take any day of the week 

Mo: I had, he recommended a physician down at the Cleveland clinic and so, went down and, It was mesh was going to be put in and hold everything together. They would pull the muscles back, tie it, yeah. Into the mesh. 

Jason: So basically the muscle to the match. So that stitching the muscle, the muscle right there laying the mesh on top. So there's greater surface area to hold it in place. 

Mo: I know that this is hard to believe, but this was one of the worst surgeries. You can imagine for me, 

Jason: which is crazy to think you've gone through Whipple. And, but you've always told me that the mesh and the hernia surgery was more devastating to you physically, 

Mo: because I didn't expect it. A, I went in thinking, this is a hernia surgery. They do this as an outpatient. Right. And I learned then that the way you are coded for a procedure determines everything, everything going forward is the code. Okay. So the insurance people are making the decision. So I had this surgery, it went well. I came out with two drains hanging from one here and here out of my, yeah. Hips. there's a name for them. I can't remember them now anymore, but they, they look like little Turkey baisters hanging out of you just visualize that. And, They kept me overnight. Now, when he did, when the surgeon said, when he got in there, they were much more extensive than he had thought took much more time to repair than he had thought. However, the code doesn't change. He put me allowed me overnight observation. There's a little wiggle room in the code. If the physician says that 

Jason: of what the insurance company will pay for, 

Mo: I did not care about and insurance at this point. 

Jason: No, you 

Mo: just wanted out 

Jason: of pain. 

Mo: So he comes in the next morning to discharge me and I said, wait, we need to talk. I said, I can't go home like this. This is really very, very, very, very, very painful. And I said, and I just threw up didn't matter. There was no witnesses. as you do  and I realized that I was going to lose this cause he came back with the, well, you will heal better at home. Okay. And if he had said your insurance won't cover it going forward, I would have broken my checkbook and written whatever they said whatever it took 24 more hours. That's all I was asking for 24 more hours. 

Jason: Nope. Our checkout, whatever the price you would have written that check written. Right. 

Mo: And out I went okay. And that recovery was most unpleasant. 

Jason: The most unpleasant. 

Mo: And that's kind because, you know, doctors will say to you. You may experience some discomfort.

That means you're going to be in screaming, hellacious pain, that's that's do you have to learn the way they talk? And I have, I have a friend at the same time, and this is a true story. She was in a biking accident. She's a bicyclist and she's four years younger than me and she fell off her bike and she broke her right leg. She, broke her right arm. She went on her right side and she did damage to her left wrist, I guess, as she went down. So she needed three procedures. They determined they were going to do them all day. She was in the emergency room. They waited till the swelling went down, sent her home, then brought her back and they did these three surgical procedures. They've cast in her right arm. They cast it her right leg. They did a surgical procedure, put a plate in her left arm and cast did that. She had a left, leg and, a torso. That's all she had Jason. Right. Do you know. They did that as an outpatient because they were all three are coded outpatient, outpatient procedures, even if all three happened in the same day, right out to the curb. no underwear on the poor soul. 

Jason: Maybe we'll do a medic, a sort of American health care system. We can do that as another. 

Mo: I didn't even have underwear on. And I said, Linda, how could you pick up your underwear with your left leg? Yeah. You had no options. I said, this is wrong anyway. So we commiserated through that. But this is what happens sometimes after chemo, there's damage, not damage, but weaknesses, there's weaknesses, there's effects. You know, some people get neuropathy. I mean, there's all kinds of things do you find out when you talk to other people? 

Jason: and was that disappointing to you to think that I thought as soon as I finished my chemo on October 21st, Good times, lay ahead. And for you, it actually got far worse because of the hernia surgery and the physical overhang or, or, hang over from chemo. So emotionally for you, what was that period like? That's, you know, five to six month periods. 

Mo: Disappointed. I wasn't expecting it. You know, it caught me blindsided me. Right. You know, I had envisioned, That this recovery was going to after chemo go up like a rocket. Really I did, you know, and instead it went up like the stock market, right. so over time, There was improvement, but there were setbacks and I would say to anybody to expect them to expect, to be tired, to be, and you're, you're always comparing your energy level. You're always, you know, there changes, you know, your body is different after chemo. Your body is different after a Whipple. 

Jason: Yeah. Yeah. Okay. So. Now we're at the, you know, that, that, that post chemo period. and yeah. And you still have CT scans. And those will go on for the rest of your life.

Mo: Right. I have them quarterly at that point after chemo every three months, 

Jason: every three months. So, so help us understand. At what point did you feel like there was some semblance of normalcy and normalcy? I mean, I don't want to assume that you ever get back to where you were before. That diagnosis in February of 2014. But at what point do you think you got back to a state that you would consider normal? 

Mo: I would say June, 

Jason: June of 2015. 

Mo: Yeah. That was, that was pretty much clear sailing from then on 

Jason: so 16 months 

Mo: it's still before I had the surgery for the, the mesh. So actually, no, I take that back then. It was probably, 2016. When Jan, February, 2016, two years where I've said, okay, 

Jason: now pancreatic cancer was an almost two year, situation, right before you got back to your description of normal, 

Mo: right. That you're right. That's a good, good way to have. 

Jason: And normal includes. Every three months, still a CT scan that you come to with dread on the day before 

Mo: and montly visits to the oncologist 

Jason: and monthly visits, to the oncologist. So that was a year after now, two years after, because of the mesh, the abdominal surgery for the hernias. the five year mark is a big mark in for pancreatic cancer patients. So you just hit your five year Mark. This past April or March, I should say a couple of months ago. And you successfully, you know, hit that milestone, which is when, you know, physicians, oncologist often, you know, cleats, you know, they claim that as that's, when you were officially in remission.

Mo: Right. And they've set the timer back to zero. So your chances of having this is pretty much the same as the general population have it coming back. So now that was huge. 

Jason: How did that feel? So in the months leading up to it, when the day actually came. 

Mo: specially that CT scan. I was like, yes. 

Jason: So that, that, that marked your five years was the CT scan where I'm sure you were on pins and needles heading into it. take us through what it felt like when dr. Harris said, let me take you through the CT scan and let me also mark this and 

Mo: let me let show you your blood levels. And let me show your, your, Cholesterol levels, which he said, claims he's never seen anything like this in his practice that I have extraordinarily high levels of good cholesterol, which I said to him, how could this have be given my poor eating? Yeah. But it's, you know, and he said it was genetic. Cause as we know, grandma lived to a hundred, never ate a vegetable. And so perhaps that. You know, contributing here and yeah. 

Jason: Then when you reflect on that, as you're sitting here just over five years from that, that painful diagnosis, on that Sunday evening in the community hospital, what, what goes through your brain? What goes through your emotions or what's your emotional state in terms of reflecting on the fact that you were diagnosed with one of the worst cancer diagnoses that exists, you went through hell and back, you survived. And, how are you thinking about today? 

Mo: You know, it's, it's interesting. They have that hat, the, you know, I survived pancreatic cancer, pancreatic cancer, and I don't think I survived as much as I experienced. it's survival to me, is somebody who's been in the wilderness for 17 days without food and water, or, you know, come through so much different than what I experienced. What I survived. Jason is motherhood. That's what I survived, but I experienced pancreatic cancer and so many different journies. 

Jason: You said before that 2014 was one of the best years of your life, which was the year of pancreatic cancer or one of two years of, of intense pain from the cancer. Yeah. And that is not what I would expect you to say or anybody with pancreatic cancer to say, so can you help help us understand why I feel that way?

Mo: And it's, it's sincere it's I'm not saying it to be glib or light it's sincere. When I look back on that journey, that experience, that inconvenience. Of my now 74 years. first of all, it brought my children together with one another four times in that year. Huge for a mother. So it just took a little pancreatic cancer for that to happen. Four times I met enormously amazing chemo friends. That I have just so much respect for, gathered so much strength from, who shared my journey. And so that made it so much more pleasurable. You know, when you look, it was like looking forward to a social event. Yeah. That's really what it was for me. And I experienced the kindness of friends and neighbors that, you just, you can't imagine. What that means to a person you can't imagine when people. And now remember, most of my friends are my age and so they're older women. And so it's an effort to cook and do many of them. and so at, for them to do that for me and to, to be so kind and so aware, was just extraordinary. Yeah. I had no idea. You wouldn't know unless you went through this, you know, you know, it's just, and it was, it was just a good time in my life. Really good. Aside from the pancreatic cancer, pancreatic cancer, it had more positive than negative. That's what I decided to say more positive than negative.

Jason: And you've shared with me before this notion of survivors guilt. So help me understand what you mean by that. 

Mo: When you hear about anybody else, that's had pancreatic cancer, especially young people. And you hear, they didn't make it. There is a sadness that comes upon you. You can't, I can't help it. I can't help it. You know, when I hear somebody say, their sister died of pancreatic cancer two years ago. And of course, as you talk to people and you tell people which I do. Any place I go, if I go into a public restroom, I'll tell people I'm a pancreatic cancer, not survivor, but that I I've been through it I'm five years. And I'm still here because I want people to know that if they ever hear it or they ever know anybody in their family or friends that hear it, please don't see, think it's the end. Please don't think it's the end. So, but there is a sadness when somebody does not have it that great, good fortune that I had that miracle and miracles do happen.

Jason: And when you think about the people that will hear this set of interviews, and most likely they're listening because they, or, or someone close to them has received this diagnosis. What would you want them to know?

Mo: I'm a great believer in miracles. I know other people don't, but I see them every day, every time. And then to have that experience in my life and to know and believe what can happen when God and good medicine come together and team up. it's amazing. Amazing. And there are lots of people out there that don't believe in God. That's fine. that's their choice. But, I think we start believing in something higher power. Sure. You know, you guys have always called me a God girl, but, you know, I was, very prayerful, very prayerful and thanks. Thankful Jason, very appreciative of the miracle, you know, and saying to myself, That I was, you know, this miracle happened to me. What are the expectations from God of me really? 

Jason: And is there a way, any 

Mo: way you feel like you're not doing enough? 

Jason: Well on that topic, how has pancreatic cancer changed you? in good ways and bad ways? Like, has it changed you and if so, what ways has it changed you? 

Mo: So it makes you realize what's important family. yeah, definitely. It, it elevates the importance of family for sure. Okay. not that we didn't always know that and believe it, but we, it was tested. Everything was tested. You know, your faith in God was tested your, the value of family, your priorities. What's really important in life. Yeah. You know, and yet you still. You know, some people say, Oh my gosh, I've, I've, I'm a different person because I, my priorities have so changed. I can't say that that's so much. I mean, I still do my silly things. You know, I still sometimes probably get angry at things. I shouldn't get angry at him. You know, I'm always, it's a journey trying to become better. And, But, no, it's just, I don't know how to say I, I, it hasn't been a 180 change, but it has been an awareness, just an awareness of what's important. And sometimes I'll sit and, and, think about what that journey was like. That experience was like, and it's interesting. the doctors were very honest. They, one doctor, I think it was dr. Harris. The oncologist said to me, when I first met me, he said, If you're here a year from now, you'll probably be okay. 

Jason: That's a pretty stark statement. It's a stark statement. 

Mo: By the way, he retired the day after my last visit with him in may he retired and you said very astutely. He did his job. He brought you to five years. Yeah, 

Jason: yeah. Yeah. He went out on a high marks for sure. For sure. 

Mo: Good, good man who lost his son? 36 year old man during the past five years to cancer. So, you know, it's, 

Jason: It definitely, you know, at the outset of you and I sitting down for these set of interviews, the belief was that by getting your story on tape, so to speak that it could be one of a story of hope and of positivity, which I think is lacking in the cancer community and really the pancreatic cancer community. And so it really is. I've always been amazed and have marveled at. Your journey, which going into this, you, you obviously have to have faith and conviction. And I think everyone in our family had the conviction that we're going to beat this and we're going to will it to, to be that way. but you're never, you never sure. And you never know, and you choose to be positive because the one thing we can control is how we respond to what life throws at us. And, but . But watching and marveling at the last one, five years for you specifically, it really has been, I think, important for us to capture this in terms of on audio and to be able to share it with other people, because I know that. We as a family and I, and I hope you as well, would have benefited to listen to another person who would walk that journey before you did. And before we did collectively to give us a sense of optimism and to give us, you know, a belief that this can have. A positive outcome. And so I'm very thankful that you were willing to sit down and share your insights, your stories, your colorful anecdotes, because it is something I wish had existed five years ago for us. So I can't thank you enough 

Mo: drugstore. When I sat there crying, if, if I could have gotten in the car and listened to somebody, tell me that that's okay. It's normal. I did that too. I did it worse, you know? that would be great. There was, you know, they, that hat, that says I am a pancreatic cancer survivor was given to me one month after my last chemo. I clearly at that point was not a survivor, but this woman, her mother had died of pancreatic cancer. So she's very active in the, the raising funds for pancreatic cancer research. And she sent me this hat and I thought, what belief she has. That I am a survivor. And, and I thought that, you know, when, when you look at the odds, which I really did not focus on, I truly did not focus on the odds when, you have to say to yourself when they make those purple shirts and they make those purple hats, somebody has to be wearing them. Somebody has to be wearing them and then making hundreds of them. So maybe thousands. And so, yeah, 

Jason: I remember when I first saw you with that purple hat, it was your last chemo was October 21st. And then we had a family reunion over Christmas break in Orlando, 

Mo: and I had a wig in that hat on, and you had a 

Jason: wig and you've never been a hat person. You've never worn a baseball hat in your entire life. I don't remember showing up in Orlando and seeing you sitting on the couch with a purple hat on, and, I knew something was different about you at that point. And, and so it, it is amazing how, as you said, you know, things change in terms of your priorities and your focus. And I, as I said earlier, I just think it's, it's just so wonderful to observe how you chose. To act in the face of pancreatic cancer and how you can say with a straight face that 2014 was one of the best years of her life. And so if any, if there's any way that other people who are in a similar situation, have the chance to have the experience and the positivity that you experienced that well, then, you know, it's a job well done.

Mo: What I would, I should have done more writing, chronicling the journey. I sent emails. And so those are part of the history. And of course, as I get older, my memory will get worse. And as you know, I was a store things and embellish things or which whatever, but, I would, you know, urge people to either record or write down. Their particular experience their journey so they can share it. You know, that's the important thing is to pay it forward and all, and you know, there were no matter how the low points are. just know it's very normal. It's very normal with that. 

Jason: I thank you Mo 

Mo: thank you, Jason, 

Jason: to good  health and to,a dn d to helping others, that, that, that, that are in the club that are in the cancer club.

Mo: I forgot to share. When I told my mother, I finally came clean when I was visiting her. And I said, mom, I said that gallbladder surgery really was not. Gallbladder surgery. And it was, as my hair was coming back. And so she sorta little curls in there front. And I said, mom and I actually, that was, pancreatic cancer that I had gone through and I, the chemo and, and she said, You look fine to me, you're none the worse for wear that was. That was it. Now I'm like no hand ringing, like, Oh my gosh. Now, you know, given she's 98 when I'm telling her this, but still that's a whole nother story. 

Jason: GM is a whole other story. 

That's fantastic. Absolutely hilarious. So thank you Mo. 

Mo: I love you Jase. 

Jason: I love you too. 

Mo: Bye 

Jason: bye. Bye.  thank you for listening to this fourth and final episode of the Mo Chronicles navigating pancreatic cancer. We hope that this series has helped in some small way for those diagnosed with pancreatic cancer or for anyone. With someone in their life affected by pancreatic cancer. In addition to being a wonderful interview subject, Moe is also a very good communicator. If you have questions or feedback for Mo, please email her mo@themochronicles.com. Mo also has a website filled with photos, anecdotes, feedback, and more, which can be found at theMoChroniclescom. Thank you for listening.