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Talk About Cancer
Talk About Cancer is a podcast of stories from cancer patients, survivors, caregivers, and family members. The host, Serena Hu, talks to her guests about their emotional journeys with cancer and what happens to the relationships in their lives after a cancer diagnosis. They sometimes explore how culture and faith shape each person's experience of cancer and grief. You will find diverse perspectives, honesty, and wisdom in these stories to help you deal with cancer and its aftermath. http://talkaboutcancerpodcast.com
Talk About Cancer
Be present with the pain
Michelle and Phil shared some of the most challenging moments, thoughts, and feelings they’ve had in their caregiving and grief process over the last three decades, and how they were able to eventually move forward from the devastating loss of their son Gabe.
You can read more about their story in an article Phil had written for the San Diego Reader. Also, check out Okizu and the amazing services they are still providing to families today.
Please follow the podcast if you are enjoying the show. Would also be awesome if you can leave an honest rating and review so I know if I am serving the interests and needs of you listeners out there.
Have topic suggestions or feedback about the show? Contact me on Instagram or email me at talkaboutcancerpodcast@gmail.com.
Thank you for listening!
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My reflections on the conversation:
I asked Phil our recording what he meant by the following (in reference to his last moments with Gabe):
"I feel like having gotten through that moment and then having gotten through his actual death... in some way was part of what enabled me to get through the last 23 years."
He explained that seeing Gabe accepting his own impending death helped Phil start to accept what was happening, and while Phil at that point had spent nearly eight years trying to save his son, the most loving thing he could offer at that moment was to help Gabe leave, and "... help his spirit be freed from this life."
Listening to Michelle and Phil’s reflections on their caregiving and grief experience dusted off some of my own memories of the most intense moments I had with my dad’s cancer experience, like how my mom and I used to argue quite often because we were both stressed and perpetually sleep-deprived or having intimate conversations with each other when my dad was dying.
What I did not experience though, was the decade-long heartache Michelle described. As someone who doesn’t have children, it’s impossible for me to fully appreciate how devastating the experience of losing a child must be for parents. But that’s also what’s really reassuring about Phil and Michelle’s story. While they described their experiences in different words, the underlying message was the same - that grief requires courage, honesty, and persistence, but if you genuinely put in the work, the wound will eventually become a scar.
Phil also added another piece of advice after we finished recording - which is that it’s okay to ask for help, and if help is offered, it’s okay to accept it. I couldn't agree more, but I also know that we live in a culture where asking and accepting help is very hard for some to do. Just remember that dealing with cancer is often a marathon and not a sprint, so if there’s ever a reasonable time to get help, this would be it!
Hey, it's Serena here, your host for the Talk About Cancer Podcast. A quick plug before we start. If you've enjoyed listening to the show, please share it with two people who may also benefit from listening to other people's experience dealing with cancer and its aftermath. Stories can really help us make sense of our experiences and feel less alone. In today's episode, Michelle and Phil share some of the most challenging moments, thoughts, and feelings they've had in their caregiving and grief process over the last three decades, and how they were able to eventually move forward from the devastating loss of their son Gabe. Let's dive into their story now, and I will check back in with you at the end. Let's start with a quick intro and have you tell us a little bit about yourself, who you are, where you're from, and anything else you would like to share with our listeners.
SPEAKER_00:I'm Phil Cotalfo. I'm originally from Brooklyn, New York, but grew up in San Diego, where I met Michelle in eighth grade, and uh have lived in Berkeley since 1975. We've been married since 1978. We had three children, three beautiful, wonderful children. Our daughter, Jessamine, is our oldest, and two sons, Gabriel and Peter. And Gabriel was diagnosed with acute uh lymphoblastic leukemia at the age of seven in 1991, and went through several years of treatment and several relapses and a bone marrow transplant, and eventually succumbed to leukemia in 1998, a month after his 15th birthday. And today we have two wonderful surviving adult children and their spouses and four grandchildren.
SPEAKER_02:And I would just say exactly what Phil said, except my name is Michelle Larger, and I still say we met in seventh grade, but he always says eighth. And I'm a retired nurse as well as the mother of three children, and as Phil mentioned, uh Gabriel was our middle child, and uh he was diagnosed with uh leukemia at the age of seven, and the impact on our family was tremendous. One of the things that I've always uh that I felt from the beginning of the diagnosis to the very end was I continuously had a ache in my heart. And at the more or less the 10-year post-Gabe's death, I suddenly noticed the ache had gone away. And uh I just think that grief is one of those things that is deep and reoccurring and comes and goes in various uh amounts. But I think we all need to pay attention to the the feelings that we have and not try to avoid the deepness of it.
SPEAKER_01:Do you remember that moment when you realized that the ache was gone?
SPEAKER_02:I do. I I I just suddenly uh I remember waking up one morning and I said to myself, my heart doesn't ache. Um it was a it was a physical feeling that I had for for many, many, many years. And one of the things that looking back on it was just the the length of time and or where it was just a evolving transformation of acceptance and and dealing with the loss. Um but I I felt I felt so much better at that point. Anyway, it was a yeah, it's an interesting physical phenomenon that I can, you know, pinpoint the the moment when when it stopped hurting. That's so interesting. Yeah.
SPEAKER_01:So just one morning you woke up and that's what you noticed.
SPEAKER_02:Yeah. Yes. And and before that it was every day? I think it was just background. It was just my background kind of physical sensations.
SPEAKER_01:What did you do during that grief process? There's a saying in the Chinese culture that the greatest type of grief that you can experience in life is the loss of a child. What did you do to work through that in 10 years? And as you said, it's not a linear process, right?
SPEAKER_02:So well, I have to say as a mother, you feel so responsible and so physically connected to your children that for the longest time uh I've I felt totally responsible. Like, what could I have done differently? And maybe part my nursing background as well. Like, what did I miss? What did I not do? What didn't we follow through with to prevent this from happening? And I felt very, very guilty that somehow I couldn't have prevented my child from being harmed or die. And I think Phil, who has a little bit more Buddhist and spiritual um grounding than I do or did, mentioned something about mantras, like you know, saying something over and over again to calm myself. And so my my mantra was I did everything that I could and that it was out of my hands, and that I accepted what had happened. And I didn't believe it. I didn't I didn't believe anything that I was saying in the mantra, but I just said it over and over and over again for a very long time, and suddenly I it it took hold and I could let it go. And also I came to believe that everybody has um a path in life, and that path is marked out for you in a certain way that I didn't have any control over Gabe's path. He did in his life what he needed to do, and I have my own life that I need to do what I need to do in my life, and so that was another kind of way to accept the grief as well.
SPEAKER_01:Thank you. Yeah. Phil, did you have that same feeling as what Michelle described in terms of the guild?
SPEAKER_00:Uh no, I first of all I would say, and I think Michelle will agree with this. I'm I'm not as inclined to feeling guilty. Uh I'm not I don't uh I think perhaps it's the difference between having uh mostly northern European ancestry and versus in my case having a very southern European, like extreme southern, like Sicily background. But beyond that, uh I felt pretty confident, pretty certain that we did do everything there was for us to do, that there was nothing that we could have done or should have done that we chose not to do. The plain tragic factor is that there really wasn't anything to do past a certain point. This again comes after many years of multiple years-long treatment protocols capped by a bone marrow transplant. So we threw everything that medical science had to offer at his disease, and it just didn't work in his case. But I certainly had the grief and the loss. It's been almost 23 years since he died, and some memories uh may be a little bit hazy for me at this point, but I don't remember having the same physical ache that Michelle describes. But that could just be the case. I do feel that in some ways that kind of loss is even more grievous for a mom than it is for a father, because the the mother obviously literally carries the baby and gives of her own body that the baby can come into the world and live. But I certainly had the, you know, there were times where you just feel depressed. You feel like the world just doesn't look right to you anymore. And, you know, how am I going to go on with this? But we, in the first months and years after Gabe died, we spent a lot of time with each other just talking. Sometimes we were talking about having the same conversation over and over and over again, but just being with each other and and trying to hold each other up and hear each other and cry together and everything. And this question of like Michelle would often ask in those conversations, do you ever think that you know maybe we should have got him put him back in chemo? You know, we should have tried this or we should have tried that. And I would always say, you know, we did what the doctor suggested, but there really was no hope in any of that anymore. And then finally, at one point, after, I don't know, a year or two, or I it's hard for me to say how long it was, I said to Michelle, you know, when you ask that question, should we have done XYZ? That way lies madness because you're trying to make what is be what is not, and you're trying to make something that is not true be true. And it can, you can never get there. So you're really only going to drive yourself crazy. Uh we don't have to like it. It doesn't, you know, it's not a matter of it being okay with us. What Michelle said earlier about the heartache, you know, waking up one day and finding that her heart was not aching anymore. That doesn't mean that the loss isn't there. The loss is there. That never goes away. We still think about Gabe and talk about him all the time. But when you realize that's just the way it is and it's not going to be any different, and you're not, you're not struggling to try to make it be different, that provides an opening into continuing with your life. I also want to say that the fact that we had two other children, our daughter was in college at the time, and our other son was in uh middle school, they needed us. They needed us to be parents. Yeah. And I've always thought that that was a lifesaver in and of itself. I know that some people completely fall apart, some marriages, uh, in fact, a great many marriages fall apart. So we're really fortunate in that that didn't happen to us. But I I also have felt that as a practical matter, we we didn't have the margin to like all of a sudden stop being parents or stop, you know, working. We took time off from work, obviously, but you know, we did have to go back to work at some point, and we did have to have a family and a household, and and that was very helpful just on a day-to-day basis. But meanwhile, the grief process was ongoing until we kind of came to terms with it. And as I've told you before, at one point we realized that what had for a long time been a kind of open wound, you know, psycho-emotionally, had finally become a scar. And as I've said uh many times to many people, you can't live with an open wound. You can't live indefinitely that way, but you can live with a scar. And that scar is actually kind of it may sound weird to say it, but we kind of cherish that. That's part of who we are, part of what our life is, part of what we share as a family.
SPEAKER_01:How are those two things different to you? The wound versus the scar?
SPEAKER_00:Well, uh to kind of continue with the analogy, if you have a cut on your arm and it's bleeding and it gets treated, and it's no longer bleeding, maybe you get stitches, you know, maybe you get a bandage, whatever, it needs to heal. If it doesn't heal, there's a risk of infection, there's a risk of more uh serious, more dangerous injury or disease. That's not sustainable. And at some point when the wound closes up and begins to form scar tissue, that's a sign that you're healing and that you're going to be able to continue without further risk or danger, you know, peril from that injury. So I would say to bring it back to the actual emotional experience of this loss, as long as we were pretty much completely in the throes of that grief and feeling that depression I mentioned a minute ago, and questioning the value or purpose or possibility of going forward, we couldn't go forward. But once we began to heal that open wound of grief, we could go about our lives and give of ourselves to each other, to our children, now to our grandchildren, experience joy, which again does not negate or diminish or obviate the loss, which will be with us to the end of our days. But we we actually have a pretty remarkably happy life today. Gabe is still present in our lives in several ways. We have two grandchildren who carry his name as their middle name, and there's a number of other children of other young people that we know who have named their children in some way after him. And stories about him are pretty frequently coming up in our life as a family, uh, whether it's just Michelle and I at home or we're visiting with our children and grandchildren. Here in Berkeley, there's a soccer field named after him. And whenever we go down there and we see scores of children running around like crazy, that really fills our hearts. I've refereed games there, you know. But see, I don't think we would have been able to experience that and pursue that if we hadn't gotten to the stage of having that wound become a scar.
SPEAKER_02:Also, we couldn't have ever gotten anywhere without the support of this wonderful organization called Okaizu, which is a really remarkable organization that is based on uh the care of the entire family of children with cancer. So many various camps for kids with cancer just focus on the cancer child. But this one also focuses on the siblings and the parents, and the support that we received was just remarkable. And I think I owe the mental health of our family to our connection with Okaizu. I mean, there's just no way to have conversations with people who aren't going through a similar experience. Many people react like, oh, I don't I don't want to hear because it might, I don't want it to happen to me. You know, there's uh fear and uh helplessness and you couldn't mention white blood cells to them without you know, some kind of crazy charge on it where you could talk to uh other families going through a similar situation. And so you get the the kind of I I totally understand where you're coming from experience when you're in a support group uh of other parents with children with uh cancer. Um and our two kids, I mean, as Phil mentioned, many marriages fall apart with the stress of that experience of uh a child's focus so much on a child. And the siblings often act out in ways to get some attention, which are often very negative. And I have to say, I was always worried, especially about our son Peter, who was the bone marrow donor for his brother, that somehow, you know, his gift of life didn't work, and what that meant to him, you know. And he isn't the kind of kid who comes out and says, Oh, I feel this way or that way. He acts and reacts more than he talks. Um, and so both of my kids became counselors at the camp, um, as well as campers when they were of an age to be a camper, but they both became counselors. And I think that provided so much more healing for them to have access to that. And I I can't I can't say enough about the gift of Okaisu in our lives at that point, it really did make a difference.
SPEAKER_01:It's a really incredible program because I mean, as a former social worker, we always talk about the family as a system. And you're right, oftentimes the services that are provided kind of just touches a small part, maybe not even a small part, but just like a part of that system. But it's like they all interact together. So yeah, the camp sounds like people knew what they were doing.
SPEAKER_00:It's uh it's a remarkable organization. If people want to know more about it, they can visit their website, okaizu.org. That's o-k-i-zu.org. As Michelle indicated, they do summer camps for kids with cancer, separate camps for the siblings, and then they do camps for the entire family. And we often had the experience during Gabe's illness of people who were close to us in our everyday life, whether it was neighbors or friends or even our family, wanting to do whatever they could for us, but not knowing how to approach us, not being able to do or say the right thing or just be with us, not to mention the people that that Michelle alluded to who would just kind of go into freak out at the slightest mention or allusion to what we were going through. And I, you know, I understand that, but we learned early that we couldn't really take care of those people. But back to what I was saying, you know, our own parents and and siblings, their hearts were breaking for us, but they didn't know how to be with us, even how to talk with us about it. And yet we'd go to these camps and we would see people who, if we had met them in a different context, we probably would not ever have gravitated to them because of politics or religion or geography or whatever the case might be. But we found a bond with them that was kind of remarkable. And also the counselors, I swear to God, they're like, they're like guardian angels. And several, we're still close to several of them. In fact, one of them lives very close to us and we're godparents to her two daughters, you know. So that's a connection and a source of sustenance for us that continues all these years later, even though we don't go to the camp anymore. We're still in touch with the organization. We help support it and stuff, but because their program is entirely free to the people who who attend their camps. And so we always felt that was a gift from other people to us during the years that we were going to the camp, and now we try to give that gift to others.
SPEAKER_01:Yeah. It's really amazing. Going back to what you were saying though, so it sounded like the two of you were able to meet with other parents and get counseling there of some form. And then similar for your two other children, how did you talk to the kids?
SPEAKER_00:Our children.
SPEAKER_01:Yeah, as this was happening, and it was uh actually a quite a big part of their childhood, right, growing up. Oh, yeah. And then also after Gabe passed.
SPEAKER_00:So when Gabe was initially diagnosed, Jessamine was 11 and Peter was four, four and a half, something like that. I don't remember exactly what we said, but and maybe Michelle remembers a little more of this. But we just, you know, had to tell them look at Gabe's sick and he's gonna be spending some time in the hospital, and we're gonna be spending time taking turns being with him in the hospital. Uh, but the doctors feel good about him getting better, and uh, you know, we're gonna hang together as a family, we'll take care of you and you know, we'll do everything we can for our family and our children. And they accepted that, but it was it was obviously very hard on them. And the simple you know, fact is that they had to do with a lot less of our time and attention during those years, uh sometimes more so than others, you know.
SPEAKER_02:We don't have any relatives in the area that we could rely on, and so that was a little tricky at times since he did have to go in the hospital for several days at a time for treatment, you know, frequently. But uh I think overall uh the kids handled it well, but it would come out in interesting ways. Like my daughter was playing soccer and she twisted her ankle and it was a little swollen, and we just put ice on it, and she was like, I need to go to the ER.
SPEAKER_00:I want an I want an x-ray.
SPEAKER_02:Yeah, I want an x-ray. And we were like, No, it's fine. You know, this happens sometimes. You can wiggle your toes and you can move. She goes, What do I have to do to get some attention around here? Get cancer, which just really hit the nail on the head in terms of what two other kids were feeling at times, I'm sure, but they didn't get the attention that that it wasn't un unfairly for them very pointed towards their brother. It wasn't all smooth sailing. I mean, there was a lot of difficulty in Phil and my relationship because of the way we handled it. He was extremely always upbeat and positive and would never say anything negative. And and I was like, can't you hear me sometimes? I just want to say I'm scared. You know, that was kind of like an area that we had to get through in order to finally hang in together.
SPEAKER_01:I'm assuming that you had to come to an agreement on how you would present to the children.
SPEAKER_02:I think we came to the conclusion that we had to just always be honest with them and tell them what happened or what was happening, and that I think that's the only way you can have this family survive. I mean, not to put a b an extra burden on them, but we had to just be honest and and say what was happening.
SPEAKER_00:It became more difficult naturally with the relapses because uh initially we had we had very high hopes that he was gonna be cured and we would be able to resume our lives. And that turned out not to happen. And every time he had another relapse, he had three in all. It got more grave. You know, we would have to kind of manage how we broke the news to them. And that was not easy. Um, but you know, around the time of one of the relapses, it might have been the first one, I don't remember. But we were, Michelle and I were in shock because we really didn't see that coming. It was about six months after he finished his first three-year-long treatment protocol. And he had been doing great. He had gotten his hair back, he was getting a lot of exercise, he just looked fabulous. And then we found out that he had relapsed. So we didn't tell the other two kids immediately because I think he was going off to camp or something, and we wanted to wait until we could be alone with them or something. And I was talking with a friend of mine at the time who said, What are you protecting them from? And that really opened my eyes. And she pointed out that, you know, if you if you don't tell them, they're gonna find out one way or another anyway, and they will suss out that not only is this a serious thing, alarming thing, but you didn't tell us about it. And that tells us, that tells them something else. That it's it's so bad you can't even tell about it. And what does that mean? So, as Michelle said, we realized that we had to be honest, we had to tell them the truth. It wasn't being dishonest to, like I say, kind of manage the circumstances under which we told them, but we realized that we we couldn't somehow keep it a secret from them.
SPEAKER_02:Also, at the end of his life, he passed away at home. So, you know, our family had the opportunity to gather with him for those two weeks. Um mentally he he got drowsier and drowsier as time went on, but mentally he still was Gabe. And uh we had an incredible opportunity to say goodbye to him and he and he to us too. That was truly amazing, remarkable. He he at one point he called uh his sister over and had a deep conversation with her and she with him and his brother. And I've often wondered if I could ask them what he said, but I feel like that was their special moment with him.
SPEAKER_00:Yeah, we still don't know what they said to each other.
SPEAKER_02:No, but they do. Yeah, yeah. Really? Yeah.
SPEAKER_01:So they never told you what they talked about. And you haven't asked, or you asked and do it like okay.
SPEAKER_00:Well, I I think in a way, as Michelle said, we felt like that was for them. That was their kind of parting conversation with their brother, you know. And sure, I would love to know what they said. If they volunteered it, I would certainly take it in. Yeah.
SPEAKER_02:But but both of them keep photographs of their brother clearly prominently in in their homes. I mean, he still means a lot to them. And my daughter's sons refer to him as Uncle Gabe. So I mean, I don't know. I think it's it's very accepting at some level that they know about him. Oh, we were kind of like wondering how the grandkids would be curious about their uncle who is no longer on this earth, but they just kind of go, Oh yeah, an uncle Gabe, blah, blah, blah. You know, like they heard a family story about him or something.
SPEAKER_01:If I could just go back to something you said earlier, Michelle, which is you had mentioned that Peter was the donor for the transplant. And you were afraid that maybe he felt guilty about the fact that it didn't work out. Did you ever ask him if that's that was how he felt?
SPEAKER_02:No. I never just used those words. He just sort of worried. Yeah, and you're thinking I wondered if he did, but I didn't. And I was very watchful of his behaviors, you know, wondering if in some ways he would act out on some level, and uh occasionally had some, you know, cause for concern, but probably no more than I should have for a young man who was who was off at college and you know, doing what young men do in college. But uh but a very interesting thing about it is the wonderful woman that he married. I mean, she works in a bone marrow clinic. So I I just find that remarkable that he's got somebody who totally understands the process of what he went through as a bone marrow donor. And uh I just think that that was really amazing.
SPEAKER_00:I I want to just uh toss something else in. Uh at the time that Gabe went for his bone marrow transplant, Peter was 11 at the time. And we all got tested to see uh if we were a match, bone marrow match. And the rest of us were partial matches, but not very good matches. But Peter was a six way match, which is perfect. They considered it a perfect match. Wow. And when we learned that, he said in typically cocky young guy mode. He said, Ah, you guys are weak, you know. And he was very proud of that. And then a year, year and a few months later, when Gabe died, and we had a memorial service, and I spoke at the service, and I, because we were concerned about what he might be carrying, because we knew that surviving siblings often experience survivor guilt, and because we had understood that particularly marrow donor siblings who survive may well feel some sense of uh failure or guilt or whatever, I made a point of saying in my remarks at that service, Pete, your part worked perfectly. You gave him an extra year of life uh that he wouldn't have had otherwise. Because I wanted to say that out loud in front of our whole community. And he and I have never talked about that really. So it sort of remains an open question whether he was actually experiencing any of those difficult feelings, but I saw an opportunity to, you might say, to inoculate him against that in public. And so I felt I felt that I I should do that. And and it's you know, I guess it worked. I don't know.
SPEAKER_01:Yeah. So I think you said that it's been 20 years or 23 years.
SPEAKER_00:23 years almost, yeah.
SPEAKER_01:What is it like to talk about this experience 23 years later? I think you said earlier some parts of it may be a little hazy. Um I'm just curious because I'm four years in. So it's one of those things that's like, does this get better? Does it go away? Does this still bring up emotions for you?
SPEAKER_02:Well, I feel like I can talk about it. I don't know that I could have in the early years after he passed. I did really have to change my brain patterns around the guilt and sadness that I felt around it. Um, but I probably think about him every day. In fact, I keep a little cup next to the sink that he made in preschool or kindergarten or something that says, I love you, mom. And I see that every day. I like to see it. I like to note it and feel him from that little squiggly handwritten connection to me. Um when people ask me how old Gabe would be, I I I really hate to go there. I'm like, he died when he was 15. I don't I don't like to think of him aging. I guess keep him as he was when he was here. And all honesty, I think people just deal with grief in different ways. Hopefully there comes a point where you can let the grief sort of rest and not consume you. And how one goes about that, I think you could just find so many ways. But I do think the the main thing is to think like what would this person want me to be doing right now? Would that person want me to be sad and depressed and see the world in a bleak light, or would they want them to be enjoying the life that they have for as long as they can?
SPEAKER_00:What Michelle just said reminds me that a day or two before he died, he told us he was dying. He realized he was dying. And he said he didn't want his death to that, he didn't want us to get all wrecked, was his word, by his dying. And so we sat with him, we were the only ones at home with him at that moment. And I said, Gabe, the love that brought you here is still strong. And we're gonna be okay. We're gonna miss you every day, but we're gonna be okay. And you don't need to hang on for us. And that was uh, I mean, that was obvious, needless to say, was one of the most powerful moments of the whole saga. It was incredible that he had the presence to A, recognize his situation and B, say it out loud to us. And it was even more you know, incredible that his concern was not that he was gonna die, but that how it was gonna affect us. And I feel like having gotten through that moment and then having gotten through his actual death, I was the only one who was actually sitting up with him. It was late at night in the moment that he died. Um I I feel like having gotten through that, I uh in some way was part of what enabled me to get through the last 23 years. But more broadly, to answer your question, I never have a hard time talking about it. I never don't want to talk about it. If it comes up, I don't go out of my way to bring it up. But, you know, oftentimes someone else will mention Gabe or remember something, or you know, something will come up and they'll say, Oh, I'm sorry, you know, I'm sure you don't want to talk about this. And I'll say, No, I want to talk about it. If you want to talk about it, let's talk about it. I'm I'm you know, I'm perfectly comfortable talking about it. And that's another measure of that thing of the wound turning into a scar. It it does get better, but you know, you have to be present with it, you have to be with it, you have to let it unfold, and you have to kind of do the work, your work, of what it takes to be with it and process your feelings and be true to who you are and what you're experiencing, and share it as necessary and just let it be. Again, it's not saying that you're making it okay, but you're but you're being okay with what you're experiencing. There was a time in the early years, as Michelle said, when it was difficult, or it was always fraught with emotion. But you know, emotion can still come up. It doesn't happen very often, but sometimes when it's least expected, it can come up. And that's perfectly okay. That's part of it. That's that's the truth of it. I've also told you that I had another friend who told me at one of the most difficult times, one of one of the relapses that he went through, to go into the pain. He said to me, That's how you redeem it. And at the time I understood what he was saying abstractly, but I couldn't really get my arms around it. And I said to him, I hear you, but there's a reason they call it pain and suffering, because it really hurts. Thank you, and I'll see what I can do with that. And I sat with that for a while and realized that it meant I couldn't push the pain away. And I shouldn't. It was not useful or helpful to me or anyone to push the pain away. Michelle mentioned earlier that in the first months after Gabe was initially diagnosed, I was the one who was always kind of resolutely upbeat and positive. We're gonna get through this. And I I just sort of felt, without anybody telling me this, that that it was up to me to kind of like buoy up my family spirits and keep us going. No one asked me to do that. No one assigned me that task, you know. And so fortunately, with her help, and I'm uh remain grateful to her for setting me straight on this, she realized that by doing that all the time, 24-7, I was not being honest with her in terms of my own fears, my own concerns, my own shock and pain. And I was not letting her anxiousness and concern and pain into me. And so that's what going into the pain meant, in my understanding. And that's what enabled us to be with all the ups and downs of the eight years from the time he was diagnosed to the time he passed, and the 23 years since his death. Um, you can't be anywhere else, so you gotta be here now, you know.
SPEAKER_02:Be here now.
SPEAKER_00:As Ron Dows used to say, you know. So you gotta be with that.
SPEAKER_01:Yeah. And I just asked that question because I was sort of reflecting, and for me, it's only been four years. And like you said, some of the things are fading. And and some of that is good because some of the stuff that's faded are the really painful stuff. So in that sense, it's it's good that it's fading. Um, but it just sort of made me wonder like what sticks around and why do they stick around, and how much control you have over what sticks around. I I was just curious to hear from you because it's been a while. For me, it's still a little fresh.
SPEAKER_02:So you know, it's interesting is um Phil dreams about Gabe quite often, actually.
SPEAKER_00:And I'm happening a little less often these days than it is, but it still happens, yeah.
SPEAKER_02:But I never dreamed about him. And does that make you frustrated? Well, well, but one time I had this dream that was so incredibly painful, like such a huge, huge loss. And it was all about a ring that I've worn for the last 45 years, which is an opal ring, which is my birthstone October. And I've never taken that ring off in all these years, you know, and I dreamt that I couldn't find my ring, it was lost, and I just was searching and searching in my my dream and feeling so upset. I could just couldn't believe I had lost this ring. I was just like frantic. And I woke up and I was I think I told Phil about the dream, and then I it came to me that Gabe's birthday was in October also, and his birthstone was opal. And I that was my grief dream that um was so like so like of all the feelings that I carried with me every single day suddenly came out in this dream. Yeah. Anyway, I still have the ring. Oh god. Anyway, so it it does come out, and who knows? You can't you can't control that. Yeah, yeah.
SPEAKER_01:Well, I'm just cognizant with just about coming up to the hour. Before we wrap, is there anything else that you want to say to the listeners?
SPEAKER_00:I I hope that no one who hears this will ever have to go through this, or know anyone who's who goes through it. But if it should happen that someone does, it's not punishment for something you did. Sometimes bad things happen to good people. Follow your heart, do the best you can, be good to yourself and be with whatever happens and may it go well for you.
SPEAKER_02:Thanks, Bill. I I I would say the most important thing is to recognize what you're holding in you or holding on to and talking with other people, supportive to people, it can be really very helpful. Um holding it in is not a way to let grief wash over you. It just embeds deeper and deeper. So letting go of it, I think is is uh important way to heal.
SPEAKER_01:Thank you for Michelle for taking the time to come to share a bit of your experience today. Listening to Michelle and Phil's reflections on their caregiving and grief experience dusted off some of my own memories of the most intense moments I had with my dad's cancer experience, like how my mom and I used to argue quite a bit because we were both stressed and perpetually sleep-deprived, or having intimate conversations with each other when my dad was dying. What I did not experience though was the decade-long heartache Michelle described. As someone who doesn't have children, it's impossible for me to fully appreciate how devastating the experience of losing a child must be for parents. But that's also what's really reassuring about Phil and Michelle's story. While they describe their experiences in different words, the underlying message was the same that grief requires courage, honesty, and persistence. But if you genuinely put in the work, the wound will eventually become a scar. Phil also added another piece of advice after we finished recording, which is that it's okay to ask for help. And if help is offered, it's okay to accept it. I couldn't agree more. But I also know that we live in a culture where asking and accepting help is very hard for some to do. Just remember that dealing with cancer is often a marathon and not a sprint. So if there's ever a reasonable time to get help, this will be it. And that's a wrap for today. Please consider following the podcast if these stories are resonating with you. Also, let me know if there's a specific topic you would want to hear more about on the show. You can contact me at infotalkaboutcancerpodcast.com or find me on most major social media platforms. Thank you for listening.