A guys caregiving survival guide.

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Episode Summary:

In this episode of the Your Killer Life podcast, Tammey gives the microphone to her co-host, Griff Woodford who talks with guest Michael Baltierra in this special episode that is centered around the caregiver. Whether a cancer diagnosis or any other long-term life-altering disease, the caregiver is the patient’s key ally serving as a person of support and care. Often unassuming and occasionally ignored, we learn firsthand the struggles, triumphs, and needs of our unsung anchors. Griff and Mike share their caregiver stories, unique perspectives, and outline the pressures that are often felt by men as they address fear, emotion, stress, and the often oppressive societal norms that are counter to the valid emotional needs and mental health of the caregiver.

Topics in this Episode:

• Introduction

• Our caregiver Stories

• Male perspective and introspection

• Mission oriented mindset

• Caregiving and patient partnership

• Trained to limit emotion

• Caregiver resources for the workplace and finances and home

• The hard parts of caregiving

• Losing acquaintances and gaining friends

• The rewards of becoming stronger

• Becoming a resource for others

• Adapting to the “after”

• The healthcare experience may not be the same for everyone

• Signing off

Contact Information and Social Links:

• Website: yourkillerlife.com

• Email

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• YouTube: youtube.com/c/yourkillerlife

Guest Contact Information and Social Links:

• Website: mikebaltierra.com

• Email

• Instagram: instagram.com/mikebaltierraphoto

• Facebook: facebook.com/mikebaltierraphoto/

• YouTube Cancer Vlog Playlist: https://bit.ly/34VzaA8

Resources:

• Be a guest on the Your Killer Life Podcast

• Sponsor the Your Killer Life Podcast

• Book Tammey or Griff as a speaker or podcast guest

• Snag Your Killer Life Swag!

• Check out the Your Killer Life blog posts, or the original blog, Killer Left Boob

• This podcast is professionally edited by Roth Media

Transcript:

Introduction

Griff: Hello and welcome to the Your Killer Life podcast. I am your alternative host, Griff Woodford. I am here with a, a cool guy by the name of Mike Baltierra. Mike, you wanna say hi?

Mike: Hey, how's it going, everybody? Uh, as Griff said, my name is Michael Baltierra. I am located in Covington, Washington, and I used to work with Tammey who is Griff’s significant other a few years ago. And actually a little more than a few years ago, probably about a decade ago. And we've kept in contact ever since. And, I'm glad to be here today. I'm glad to have been asked to do this with Griff, and I'm looking forward to the topic, and whatever it is we want to discuss today.

Griff: Yeah, likewise, man. So for our listeners, what we're discussing today effectively is on on the same cancer, cancer, cancer train.

The difference being from the perspective of the caregiver, and um in a smaller subset… subset for that is the, uh, the male aspect of, of caregiver.

Our caregiver stories

Griff: So. Why is this important? Right? So what we'll typically, well I won’t once they typically, I don't want to generalize, but often cases the, um, the person with the disease, they're the one that gets the focus, right?

Where in order to support that person, well, exactly that, the primary person who's supporting that, is often kind of left in the shadows and that can create problems.

Mike: Just … I am only talking from a parent's perspective, I'm not talking from a partner's perspective or even with my, my dad gone through prostate cancer about 20 years ago.

When you, when you as a parent, have a child that is going through a dreadful disease. And I, unfortunately, um both, my twins have gone through something. My son Zach, who's the oldest twin, he went through a Stage 4 Hodgkin's lymphoma twice. His younger brother or his twin brother, uh, went through Rasmussen's encephalitis when he was six.

And so we've got, we've actually gone through two, actually three stages cause Zach had cancer twice. Uh, three stages of caregiving, trying to take care of children who went through life threatening illnesses or things that could be pretty catastrophic.

Male perspective and introspection

Mike: And so the female is always expected to be the one that was always going to be there, while the male or the whomever partner, um, however you want to look at, you know, the gender roles today. Goes to work, puts food on the table and make sure that everything's taken care of financially and with insurance and whatever else.

Whereas the mother or whomever is designated as the caregiver is the one who's supposed to be the one left behind who's going to, you know, be providing, uh, initial bedside care when they're not at a medical facility, get the medications needed to whomever. And though you're really, really focused and you really are occupied a great majority of the day at one year, it's your time to take a break, so to speak.

That's the time where you sit there and reflect, and you're wonder what is going on. How am I going to do some self-care? How can I take care of myself and where can I get the support that I need? Because a lot of people think, especially when you're a guy, oh, you should just suck it up. You know, and just put in some intestinal fortitude and just carry on with your day. “Dude you're there to set the example.”

Mission oriented mindset

Mike: When in reality, the whole thing is you're actually crumbling and you're falling apart mentally, emotionally. And if you're spiritual - spiritually as well, cause it makes you question what, you know… well, if there's a, if there's another being outside of this world, why is he picking on my children? And if he's trying to set an example. Did I do something wrong in a previous life or something?

And we always have these doubts and these questions, and you don't have an answer for it.

And you don't have anybody who you can, I mean, you have friends or you have buddies or you may have hobbies with, or you may have something in common with. But the problem is when none of them have ever gone through any of this, they have no idea how to, how to react when you reach out for help.

Griff: Absolutely, absolutely. You know, and my, my experience with caregiving, obviously it's certainly different than yours, not from a parent perspective, but as you mentioned, a significant other, you know, my brief background and what I did has been effectively in the combat field my entire adult life, aside from the last four years, really, which was effectively Tammey's diagnosis, the, uh, the high stress career, that type of thing.

It attracts a certain personality type, which. To your point, always kind of expecting that the feminine element of a relationship or a unit is the one in charge of caregiving. You know, I mean, it often feels like the masculine has a disadvantage in that, you know, we're not necessarily, I wouldn't say built, but our, our biology doesn't necessarily reflect that, um, that shepherding aspect.

It's the, the hunter gatherer, right? Just as exactly as you said, you know, the one going out, providing, making sure that the caretaker is taken care of. You know, the person that needs care has the appropriate financial stability and that type of thing.

Patient partnership

Mike: Also, from a younger age too. We're also, as men, we're ingrained from society, even from family members that you know… you're not allowed to show emotion. You're not allowed to be upset. You're not allowed to wear your heart on your sleeve.

You know, you're a guy. You know, you're, you're the, you're the rock. You have to be concrete. You have to be the one who sets the example for everybody else. If you want to make through, make it through these difficult times, then you gotta like I said earlier, you gotta suck it up.

You know? And that's not fair because that's why people. I found a lot of my friends who suffer, suffer from depression or anxiety because they've never had an outlet to be able to, they don't have that safety valve that most people may have, whether it's going to train martial arts or going to the gym or whatever else.

A lot of these people are also, they're not introverted, they're very introverted. They're not extroverts. So, they have a hard time showing their emotion. So, they have a hard time expressing themselves to others? And so, that's why, you know, a great majority of the people I know who have done any type of, uh, oncology care or any type of caregiver services for their loved ones, they are suffering and they're suffering in silence and there's no one out there to listen to them.

Griff: Yeah, I would completely agree with that. I mean it from a young age and, uh, you know, my, my personal career path, I mean, that was just a staple that was not negotiable. You, you are mission oriented all the time. Uh, it's not saying that you can't have emotion, but the job always comes first. You know, there, there is not that, “this is your, allotted decompression or, um, you know, self-introspection time”, it is mission first. When you're done, you take the time that you can, then you move on, right back to mission. And you know, the, the reality is, is that there's a lot of far reaching implications in that mindset. And it does develop into the caregiver mindset, particularly for male caregivers.

Uh, again, I don't like to generalize, but you know, uh, from the breast cancer perspective, you know, that's obviously the, the majority of that is as women. And to me now anyway, it's a pretty obvious parallel why the divorce rate is so incredibly high between husband and wife who experienced that, you know, really any oncology type, uh, treatment or, um, cancer oriented disease.

Because there is that. I won't say one sided, but I will in some cases say unfair expectation of both parties to not just have to go through this horrifying and traumatic disease, but also maintain a societal and social norm of a “gender role,” for lack of a better term, right?

Trained to limit emotion

Griff: When in reality, this is a, this is a communal partnership. It's not about race or gender. It's about what each person needs in that moment in order to be successful.

I would say the reason why it's not more common knowledge to that is because it's freaking hard, man. Like it's, it's difficult to be vulnerable with someone who is already vulnerable in a vulnerable state.

Caregiver resources for the workplace and finance and home

Griff: And as a guy, and I, I'll speak for myself and myself alone in this one, you know, when I would see Tammey hurting. In any capacity, whether it was physical care or psychological care. My stuff goes out the window. I do not care about what I'm feeling right now. My job is to make her better, at least as better as I possibly can with the skillsets that I have and the experience that I have.

You know, it was about a year and a half of that, of just powering through and then, holy crap, man, like it was just about, you know, cut the parachute time. You know, I mean, really, I have no one to blame myself on that. And fortunately, you know, we, within that year and a half, we developed the, the strengthened bond of a, of a relationship that, that allowed for kind of that effective meltdown, right.

And understanding that, um, you know, well, it's about time, dude.

You know, I think that was pretty much her, her exact statement is like, well, where have you been the whole time? You know, I mean, you, you have this ability, you just need to talk to me about it right.

Mike: Well, in order to keep my son motivated throughout his, you know, um, first his chemotherapy treatments, and then eventually his bone marrow transplant. I wouldn't show any emotion in front of him at all.

I would say that for the sounds really lame, just let me go in the shower for 20 minutes and just let, just cry, you know?

Griff: Yeah.

Mike: What can you do? My son and I, we both train Brazilian jujitsu. So at the times I would go to the gym, I would be able to sit with my friends and talk to them and you know, they would always offer encouragement and, you know, I’m sorry, I'm getting a little emotional here, but you know, it just was hard, it was our time.

And…

Griff: That's the point of the podcast man. I mean, we're, we're looking for that emotion and that it's, that is not just an okay thing, but the appropriate thing to display when you're talking about something like this. I mean, it's, it's critical.

And, what, we're both experiencing right now. I mean, that's, that's the primary catalyst of success or failure in a caregiving relationship. Is being able to show that and, you know, realize that it's not, again, it's not just, okay, it's mandatory.

You have to do this or you, it destroys you. I mean, it's just that simple.

Mike: And then the hard part too is when you have to go and explain to your employer like, “Hey, I need all this time off,” or “I need to take care of myself.” And then they don't quite understand what you're going through. So they really aren't too willing to be flexible, so to speak, or, or accommodating.

And you know, when my son first went through cancer the first time, the people that I was working with at the time, they were like, you know, “take the time that you need. The work will always be here. You know, do what you can. If you do remotely from, home…” So I had a lot of downtime with them at the hospital, so I would just log in and get my work done and piece of cake, you know?

And then when I come back, it's like, “okay, you're all your projects are caught up. What happened?” Well, what am I going to do during this 48-hour stay during chemotherapy? I'm just gonna log in and do my work, you know? And, um, I mean, keep me occupied. And then, you know, the second time it wasn't, unfortunately, it wasn't as accommodating.

Oh, excuse me for a second.

Griff: Yep.

Mike: Oh, man. Okay. Allergies. (laughter)

Griff: Yeah right. Yeah, like getting hit in the face with a rock (laughter)

Mike: So anyway, yeah, yeah. It's challenging. It's a real, it's a hard challenge. Just uh…

Griff: It is. Well… absolutely. And it's, it's really not just interesting, but kind of cool, what you just brought up is kind of that, um, short term; “I can do it. I'll do anything you need type thing.”

I have not like, with employers or family or friends or something like that, but I've noticed, you know, at least in my case, families, uh, they're, they're pretty, they're pretty into it. Like they're there for the long term. But there's this big misconception, whether it's with the actual patient or the caregiver, that this is supposed to take a specific amount of time.

And usually like that, that overwhelming volume of support, whether it's through social media or through, uh, you know, personal interaction or relationships. It's like two months, you know, you get like two months of, oh, this, this flood of anything that you need, anything we can do, we're there for you. And then, It just kind of drops off.

And you know, my, my, just my experiences, it took us four years from diagnosis to getting back to a semblance of positive control over our own lives where we're not having to deal with the hospital visits, the recovery times, the, the psychological aspects of this. It was four years, man.

You know? So. And that's, you know, directing that at, even just the patient, you know, let alone the, the caregiver aspect is, in that sense, you're not even on the radar.

You know, the, the patient is the one that, that is getting that, that support. Once that drops off and then it's just the, it's not your, you're expected to go back to business as normal.

And you know, fortunately for Tammey and I, we were both in professions where we really could set our own hours and control the amount of workload that we had without, you know, missing a mortgage payment or something like that. But. You know, God, there’s so, the overwhelming majority cannot do that. And I would say that's one of the hardest parts, and not just my own experience, but the observed experience of others.

You know, the other, other kind of cancer buddies that we have of, that is a huge contribution to just the overall psychological stress of, of the disease. And you know, any, any long term disease, not just oncology related. But that kind of expectation that, okay, well it's been X months or a year, or something like that, like, why are you not back in the office type thing? You know?

Mike: Right. Exactly.

Griff: That's, that's not how that works, man. You know, the, this is a long-term process, right?

Mike: Not to, not to discredit any of the companies. I understand. They have, you know, they have products and they have revenue and they need to generate. But you know, as we're seeing today, given the people the ability to work remotely at paramount. Especially right now with what's going on, you know. It just, I’m glad the mind and the mindset is shifting to, instead of having asses as seats, you can have people work from the house and they can still be just as productive.

And, I think some of it has to do with people wanting just to micromanage others. I'm not saying one particular person, but I know it could just be a whole span of people just they have to be in the know. They have to be in their hands and everything. But you trust your, your troops, so to speak.

You sound like you're a military guy. You prior service?

Griff: Uh, yeah. Yeah, and a bunch of other stuff after that. Yeah.

Mike: So, I was in the Marine Corps and one of the things they always taught us was leadership. You know, you have to put your faith in your troops, trust them enough to do the work. If they screw up. You know, the first time you're emphatic, you're just like, “Hey, you know what? You did a real, you did a decent effort. You know, but you did this wrong. Let's try and correct it.” The next time. But if they keep screwing up, that's when you counsel them.

You know, you know and that, that needs to transfer over and then, you know, I know, I understand a lot of people hate the military. I get it. But when you have people who don't have any idea of how to be a leader, but they're a boss, then it causes friction and then that…

Griff: Yes, it does.

Mike: Then the one thing… I mean wha what branch were you in, if you don’t mind me asking?

Griff: Army, I was Army.

Mike: Okay, so you may have a code of ethics or you may have the, like we had the Rifleman's credo, we had the brotherhood, we had the esprit de corps. It doesn't matter how much you hate someone, it doesn't matter how much you love one of your fellow men. We're all on the same team. You kick me or if somebody gets kicked, gets knocked down, you help them up.

You're only as fast as your slowest guy. And that's, I think, you know, once people start understanding those leadership principles and then it actually makes them a better person.

So it just… I honestly believe that once people start to come to the realization that, you know, you don't have to sit there and watch what people are doing all the time, just have a ch, you know, check in maybe once or twice a month. They may be three times important, you know, once a week, whatever the case may be, to make sure the person is on track. That's all that matters.

Griff: End state focus.

Mike: Exactly. And then I can use that person, whomever, whether it's a father or mother or you know, whomever that they're taking care of their significant other, their children.

Then they can take care of business during the day, and then when they have a downtime, they can get focused on work. Cause, I don’t know about you man sitting in the office eight hours of the day, half the day spent in meetings anyway. So that's a big time sucks. (laughter)

Griff: Exactly, exactly. Workplace efficiency. You know, that's another thing that really does contribute, not just to caregiver and um, um, the, the patient, but the family of that as well, you know what I mean? The… the… just the unit period, you know? Cause, I mean, we all have to work. That's, that's it. You know, that, that's not negotiable. Particularly going through a disease like that where even with, you know, really high-test insurance it's exceptionally expensive, out-of-pocket type thing.

So, you know, also the workplace efficiency, you know, how, how able is that, you know, in your case in particular, how able are you to actually focus on work that needs to be done as opposed to what is just kind of being mixed in the pot as it were, just to just to kill time, you know, to check the block on time in, in office type thing.

So there's, this is a multifaceted thing and it’s certainly not going to be one episode. I think we'll probably end up revisiting this as well.

Mike: And then another thing too is, um, you were talking about the financial responsibilities as well as time in the office. So, I know this is going to sound really, really bad or morbid, but… but, after my son was considered in remission in 2006, something in the back of my mind told me like, you know what, Just be prepared.

And so I didn't take vacation time or any PTO. So when the time came for him to spend the month at Seattle Children's Hospital for his bone marrow transplant recovery, I had enough time on the books where I can just take time off and not worry about, you know, “Hey, are you gonna be back in the office?”

So… that was taken care of. One thing that people don't know either, and they don't know unless you're, unless you tell them or unless they have the, you know, the smart to go look for it themselves is. Financial assistance. People don't know that every hospital out there has got resources for those who can't afford to pay their bills.

All you have to do is just go to the finance department and say, “Hey, you know what? I may have a single income, or I just lost my job, or I'm put on FMLA. I don't have a source of income. What can I do?”

And then chances are they're going to give you an application for financial assistance. Luckily, my children. Uh, well, especially Zach. He was using adult, so technically he had no income, so he got approved for financial assistance. So… whatever the insurance didn’t pay, it was all taken care of through, through grants and funds at the hospital had in reserve.

People need her to literally look for that, because the last thing you want to do is go bankrupt because you can't afford your, your hospital bills, or you want some overzealot 21 year old out of college, who is working for a credit collector coming after you for a $5 copay he couldn't afford.

Griff: Right, right. Absolutely. You know, that was, in our case in particular, that was a long-term struggle, as well, was getting the financial aspects squared away. And again, even having really, very decent insurance, both of us. Uh, but it was, it was a mess, quite frankly, because exactly what you said. You know, there's, there's this removal of, uh, of humanity and morality when it comes to how the insurances is interact with the patients or the people going through care require care.

The Hard parts of caregiving

Griff: It's hard to maintain faith in the system when it, at least in our aspect, there was, um, there was very little humanity involved. Put it that way.

I mean, we've talked a lot about a lot of aspects of being a caregiver, cause there's, there are a lot of them. So I want to ask, what was, what was the hardest part for you to adapt to during the process?

What was the, what was just the most difficult part about being in a caregiving role, as a guy?

Mike: Uh, my son, Zach's pretty stoic himself. He'll never be the one to show you if he’s, you know, if he is having a bad day or if he's upset about something. And, so they're, so having a talk with him, like, “Hey dude, let it out, man, we're all human. It doesn't hurt to hurt.”

So, um, but just, you know, watching my son suffer. That was the hardest.

Griff: I would agree pretty much wholeheartedly with what you just said. Seeing, seeing the person that you love the most, in some cases, suffer. I mean that, uh, as far as that, um, emotional impact, that was the biggest one for me.

As far as the skill set, I would kind of call it a skill set, and also what you mentioned is not just, um, saying that, you know, it's, it's OK to, to be having a hard time, but also having to learn very small cues from that person. To know without having to ask that, okay, you, you are having, you are in trouble here. So… you know, having, having that information, how can we fix that type thing?

You know? That was, that was actually quite a learning curve for me. That's not something I ever really had to, at least in that context, really had to put a lot of emphasis on. I would have to say it’s a really common theme, as to to any caregiver, you know, what, what the struggles are.

And, and on that note, you know, we, we have different stories of caregiving of course, but do you think the relationship of care matters in relation to what we go through as caregivers. You know what I mean? It's, for you, it's your son. For me, it's my wife. Do you think there's a lot of differences to the issues that accumulate for us in that caregiving?

Losing acquaintances and gaining friends

Mike: Well, I'm not quite understanding your question, but I'm guessing that, has it, It has changed my perspective on how I treated others. Absolutely. You tend to see who your true friends are and who your true family members are when you go through a struggle. And those who, still contributing beyond vs. those that treat you pretty poorly, and then you can just cut them out of your life if you have to. If you don't want to, if you don't have to deal with them on a daily basis, that is, or a weekly basis or whatever the case may be.

But, um, yeah, I mean, our family is definitely a lot closer than we used to be. At least my wife and my children are, and myself that is. I've, I've grown closer to a good group of my friends and there are family members I have where we just grown further apart. So… it ebbs and flows. You know, you get good people come into your life and you've got people leaving.

Even so, and then you have those who just don't understand what you're going through and they don't understand why you can't hang out with them. Or, “Hey, you know, all his treatments are over with dude, why can't you just come and hang out?” Well, you know, we were told that he may have side effects up to 10 to 14 days after his treatments, and sadly, that happened. Where he had a really gnarly, gnarly, or allergic allergic reaction to one of his, um, immunotherapy meds and, you know, and ended up in critical care for a week and almost killed him.

And so, um, yeah, people don't, and they don't quite understand and you just get people who think that nothing bad is ever going to happen to them, and so they still treat everybody else like garbage. And, you know, and just one of those days they'll get a wakeup call. You know, karma, you know, it tends to cash itself out tenfold, so…

Griff: Definitely. That's actually a really good answer. It’s kind of the one I was hoping for. The reality is that, again, it doesn't matter what the relationship is, it doesn't matter what the disease is, is that there are so many common threads, uh, the caregiver and the patient role.

And I really like where you went with this is cause, you know, same thing for us as well. As, you know, starting with this large group of what we would consider support, right? And then realizing that that group is a lot smaller than we thought. And I would say for us anyway. As it became a lot easier to a) recognize and then, b) get rid of those negative influences, those negative presences that, you know, we, we just assumed, right through interaction or, or casual friendship that, oh yeah, these, these people are good to go to be around. You know, in effect our “give a shit” pretty much just broke.

Right?

It became a lot more important to focus on what is actually important as opposed to the facade of something important. You know?

That's what I would see is one of the, one of the rewards of caregiving and just going through on both parties, both the person who requires care and the caregiver. You know?

That's the next thing I wanted to ask you is where do you see the reward, as being a caregiver? I think you did touch on that a little bit already, but like to kind of delve into that a little bit more. Cause it's, you know, so far just been all the horrible stuff of being a caregiver and going through disease.

And the reality is that it's not just that.

Mike: Right. And you know, the, on the, on the flip… on the bottom side or the dark side of being a caregiver and it's morally maybe, cause it's just my opinion in the way I look at things. When I see people complain and bitch and moan about stuff that's just so petty and trivial, you're like, your life’s not that bad… you know,

Griff: Yeah…

Mike: So what your, you know, your, your favorite football team lost, or your, you know, it doesn't matter, you know, there's other things to worry about.

On the positive side though, you learn to live every day as if it's your last or to be, you know, be aware of the unexpected. I mean, I don't... what’s the word… what… am I trying to phrase it in a way that then makes, it doesn't make me sound too much like a, like a dick, but um…

You know, there may be days where I don't feel like doing anything and that's fine, but if there's things I want to do, I'm going to make sure I get it done. Um, one of the things that Zachary and I talked about was we were going to travel more this year before this whole pandemics thing has started happening. So, we're gonna have to put that on the back burner for a little bit.

But, you know, just, uh, being able to go out and enjoy life, whether it's just going for a drive, whether it's going hiking, whether it's going out to do photography, whether it's to go out and watch our favorite bands play.

The reward of becoming stronger

Mike: We never had anything that we couldn't do. There wasn't anything that we didn't want to do. And, and that was on top of going to jujitsu three to five days a week and, you know, and just going to work and I would go to work and do what I needed to do. Come home, and then we would go have a good time.

And, you know, just, um, you know, you mentioned earlier the divorce rate. I see more people, and not necessarily caregivers, but you know, some of them may be caregivers, but they also get, they also divorce over things that may have already been in place before all this, you know, cascading into a big financial and an emotional roller coaster. So, luckily my wife and I, we've been together for, we got married in 93 so started dating in 91 so, we've been in spend together for a little bit.

And the only times we've ever talked about splitting up was because we didn't have any money. And once you start to realize that just mean, yeah, money is important, but it's not the end all be all, then you don't. And then you have to start… my… my, jujitsu coach James Foster, talks about, you know, making three columns with the different colors of ink and the stuff you can't control, stuff that you just can somewhat control, and things you definitely have control over. Then once you start to realize what you don't have any control over or some little control over, those become things you shouldn't really worry about. And once you start discarding that out of your life. Your life becomes much better.

And you start and you start to accept how things go. So, when people always ask me like, well, how do you deal with your son having cancer twice? And it's like, well, you know what? Life deals your shitty cards. Sometimes you just have to roll with it and then you, you just have to hopefully, you know, pull out your, your ace out of your pocket and you get a full house or something.

You know, just, you gotta you just be… gotta be mentally positive. And I do to believe in the power of positive reinforcement. So then, you know, people just gotta stop thinking so negatively about stuff. Especially stupid shit you can't control. (laughing)

Locus Of Control

Griff: That is, that's great, Mike. And that actually rolls into kind of our next, uh, next subject in the, in the podcast, and that's, um, called the locus of control.

The, um, the, the modality of how we process our, our fate - more or less. Right. And what you just said is, is the exact example of that.

So, locus of control is kind of on a sliding scale between internal control and external control. So… the um, for our listeners here, the definition of locus of control is the degree to which people believe that they, as opposed to external forces, have control over the outcome of events and their lives. Concept was developed by Julian P. Rotter in 1954 and has since become an aspect of personality studies.

So, from the caregiver perspective, at least in in, in this context, the hardship for, and just speaking for myself, but this is also observed experience of others. One of the biggest hardships that I, that I went through is trying to control everything. And that, you know, my, my prior career reflected that. I mean, that was what you do, particularly in a leadership element of that career path… is you are, you're responsible for controlling everything. And getting to a place where you don't have control anymore over so many things. Being able to… exactly what you just said, the three columns, right?

What you can control, what you can't control, and maybe even what you, what you would like to control. The reality of… and, well, actually I'll go back a little bit because I was asked the same question, is, you know, how are you dealing with, with cancer, with Tammey having cancer?

And I, this was later on, you know, once I kind of got that light bulb moment of what my responsibilities actually are, and I said, well, I'm not dealing with that. I'm dealing with my responsibilities as they come up. I'm not dealing with cancer. I'm dealing with being able to make sure that Tammey is comfortable, that she gets to doctor's appointments on time, that she's recovering properly.

I'm not thinking about cancer. I'm thinking about her in that moment, which is an exact reflection of what you just said, and that's where I have personally, I mean, not just my own person experience, but the observer experience of others. Where from, particularly from a man's perspective, you know, we're in the, I would say even social condition, that we're the guys that fix stuff. You know, we're, we're the, uh, where the repairman of problems period.

That locus of control when centered towards the, uh, towards the internal becomes a real double-edged sword. And the thing is that. After a certain point, particularly when a disease takes years to even get through a manageable portion of, that element of control and being so hyper focused on controlling everything, you can't sustain that. Like that, that is the definition of burnout, y’know?

So, to exactly your point is figuring out what can I not control? What am I not supposed to try and control and what are my actual responsibilities? And that's not just as a caregiver, as a person, right? I mean, it's, it's a pretty far reaching application of what the really important aspects of your job as a human on this earth are.

Good stuff, man. Really good stuff.

Self-care is a resource

Mike: So, my question to you, while you were going through this, what was your safety

outlet? Well, what did you do to take care of yourself while you were, cause I can tell you what I did, but I want to hear what Griff did.

Griff: Well for me, it was a couple of things, really. Two main… main aspects, and ideally very intertwined.

My… if it was something that was developing, you know, emotionally within me that that was not necessarily reflective of Tammey's thing and our relationship. I go outside. I hunt, I fly fish, you know, that's, that's my, where, where my soul lies… is in, in the, in the wilderness. So, doing that as my kind of immediate fix, recharge type thing.

Ultimately, I would say the biggest mode of self-care for me was, just talking with my wife, you know? I mean, we're, we, we are in this together. As far as I'm concerned, the majority of my day, she's the only person that matters to me. You know, and not just, well, I would say particularly in the caregiver aspect, like that is my, my majority of my focus and on a daily aspect.

So rather than trying to shield her from what I'm experiencing and, and trying to self-correct any, you know, emotional or psychological difficulties I'm having, is being able to bring those to her and develop a mutual solution. Not just something I have to go figure it out on my own.

You know, I've, I've seen from other, again, kind of cancer buddies that have not really been successful and are in a relationship due to those… those roles is, that's one of those things that is missing consistently. And I'm sure that there are existing, uh, struggles or difficulties in a relationship, but going through something like that and not being in that capacity of this is the person that I am relying on for, and I should say that, we are the people relying on each other for our, our solutions. Right?

So really that was, that's the number one. I mean, you know, just being open, honest, and in some cases, very vulnerable with my wife, you know, I mean, because we are a unit, this is not a, not a one man show.

Mike: Understood. The thing for me was a) to stay occupied that didn't have a whole lot of time to let my mind wander.

And so then. You know, when I'm not with Zach at his oncology appointment or if I wasn't at work and it was going to the gym, the train with my jujitsu buddies, because, uh, you know, it just, you know, that whole team spirit and you know, the whole esprit de corps, the brotherhood, you know, that we, that we had in the military. It's there in jujitsu, whether we want to admit it or not, because it definitely, each gym is different, but the team I belong to, you we definitely believe in family. We're all a family and we all take care of each other.

Becoming a resource for others

And, um. The second aspect was in my son, Zach gave me a whole bunch of riff raff over this, but I filmed a lot of footage while we were going through this, and we had some vlogs that we put up every, every couple of days, and we also vlogged his bone marrow transplant because we wanted people to see.

Hey, because you go out and look for stuff and there's really no information out there except for people who are like, “Oh, I'm on day seven post-treatment,” but you never get to see the actual treatment or what they go through for like the STEM cell collection, and everything else. You know, you know, so we, we did all that and I think I have enough footage to, and I'm actually gonna start working on it soon, now that I've got a lot more free time, is I'm going to put out a little documentary about his cancer journey.

Griff: That would be awesome.

Mike: Even though I don't get a whole lot of views on it, which is fine. I do get important questions emailed to me. Like I had someone from Kuwait email me and said, “Hey, you know, my dad's going through Hodgkin's lymphoma for the third time he went through chemo with the bone transplant. Now he's got it again.” because when you have a Hodgkin's lymphoma, unlike leukemia, if you do have a bone marrow transplant, if they have a, what they call autologous transplant, which is where your own, your own donor, they collect your own STEM cells and then they just blast you full of chemo and then they give you your STEM cells back.

If it's successful, great. You don't relapse, you're… you live life. Unfortunately, the, a small percentage of people who still have to worry about cancer coming back, and then unfortunately the gentleman has his father experienced that and they were going to come to Seattle Cancer Care Alliance. So they were like, “Hey, would you mind answering some questions?”

So instead of just putting together an email form I’m like, hey, let's make a video! And so he was really happy about that.

So I think I do believe in the power of social media and getting the message out there to people, because there's going to be that one person. Who's going to find your stuff and you're going to answer the questions for them and they're going to send you a thank you note.

And this is not the first time this happened. It happened also, when, uh, my Zachary's twin brother Josh, when they were six, was going through, his Rasmussen’s battle and we would, you know, do updates on our website and we would get emails like, “Hey, man, I'm glad you're doing this because we live in the UK and we're on a waiting list here to get this done. And we don't know what to expect.”

And so there's. Like I said, there's always going to be that small percentage that are gonna find you, they're going to thank you for doing it. So.

Griff: That is absolutely right. And that's, that's really cool, like this actually going pretty well. Um, so all of the stuff that I've written down, as far as bullet points, you're kind of really seamlessly leading right into it. So it’s pretty rad. (laughing)

Mike: Cool how that works out. (laughing)

Adapting to the “after”

Griff: Yeah. So the, um, the, the kind of the parting shot here, you know, where I'd like to. To go with this is, you know, finding, uh, you know, our own, our own roles. Once the… like the real scary part of, of the disease and the scary part of caretaking begins to subside. You know, once you can kind of get out of that sympathetic nervous system response, of everything's terrifying all the time. And realize that, you know, because we've been in this, in this process, you know, roles have changed. Uh, i..ideas and goals have now changed. And you know what, what you just said is, is also I think a really critical component of the caregiver role in general is once there, is that more or less end-state.

Because I mean, you're never really done there's always that kind of over overhead thought of, you know, if it comes back… when it comes back, that type of thing. But once you're able to kind of normalize and get, get into a new routine. I can't see how, it's not the responsibility of both the caregiver and the patient to try to provide some guidance for others who are just beginning in this process.

Because it's, it's a hard one. It really is.

Mike: Yeah. And, and I'm always one to let people know if you have questions, don't be afraid to ask…

Griff: Right.

Mike: Whether it's, especially if it's directed towards me, because, you know, it's something I don't want anybody to go through without a whole lot of information. I don't want them to go through it period.

I mean, if they, if we all lived in a perfect world, no one would ever have to go through these dreaded diseases. But unfortunately that's not the case. And some of us are just predisposed to, you know, genetic makeups make us more prone to diseases and you know that, and I'm sure Tammey knows that, my son Zach knows that. Because he, he always blamed himself.

Then he had to come to, he finally came to the realization that it's just genetic, you know. You just, you don't get Hodgkin's lymphoma, you know, environmentally it's, it's just part of this DNA makeup or gene makeup. So, you know, been trying to pass information to people when, you know, we're lucky we're, we're, we're in the Seattle area.

We've got really good resources for oncology services, whether it's through Seattle Children's, or UW, or Fred Hutch, or SCCA - Seattle Cancer Care Alliance. A lot of people don't have resources like that. You know, they have, they made me in some rural area and they have some mom and pop doctor office they go to and, you know, and then I just don't get the care that they need or, or they don't have the answers for these people. And you know, and if people find me and they are like, “Hey dude, I'm sorry to bother you. Can I talk to you about something?”… Absolutely. Absolutely. I don't care what time you can get a, drop me an email. I'll get back to you.

Griff: Yep. Yeah. The exact same here. Tammey obviously is a lot more active with that. She's a lot more of a personality than I am. I'm, you know, I’m kind of the introverted behind the scenes guy. But, uh, you know, even still, you know, there's, there, there is that outreach and, you know, we're, we're, I, I personally have felt my responsibility is to help facilitate what Tammey's doing and to help broaden that scope.

And also exactly where we're doing the podcast right now is, you know, this is something that, you know, I actually did a bit of a YouTube search and, uh, you know, other than seeing. Some of your videos, there's not a lot of perspective from caregiver, and there's even less from male caregiver on this. And I mean, this is, it's critical to not just the individual in the unit, but also how it is viewed on a societal level.

You know what. Not just the caregiver and also the patient need to be successful, but that as a unit, you know how, how can we return to being productive? How can we return to being the effectively self-sufficient, right, and timelines for that.

Mike: Yeah. I just wanted to dovetail off your last comment about males, not especially caregivers, not putting information out there about their own experiences.

And being the one that take care of everything. So I found… when I was doing the same thing. I was looking for, um, just information from people who've gone through bone marrow transplants or people who've gone through oncology, but you know, visits for the second time within the short amount of time.

Because unfortunately, this is, you know, Zach had spent the last better part of five years going through cancer. Then he got a, maybe a two year, two and a half year break, and then unfortunately it came back and, you know, I would find people who put out videos for, they're like, Oh yeah, I'm, I'm… yeah, they're, they're the patient.

It's not the caregiver. Their parents didn't want to talk or their significant other didn't want to talk. And there's one girl I found who's, I don't know exactly where she's at, and I think she's in the Midwest cause she keeps talking, she keeps on going to the Mayo clinic for her treatments and she's going through the same thing Zach went through.

But you know, her husband's never the one doing any of the videos. It's just her talking about, you know, things that are coming up and things that, you know, this, that, and the other. And just talking about her and her triumphs and talking about her, you know. You know, some of the things that, some of the setbacks she had or you know, just some of the frustrations she has also because of the game, the process, the, the, the bureaucratic red tape you have to go through to get stuff done.

And, and, and that's one thing that people need to understand is like, you know. Yes, your insurance is there to help you, but they're also there to make money and they're also there to do not spend money.

And they're going to be times where you're going to be fighting tooth and nail for your insurance, or if you get lucky, you're gonna have a really good provider who's going to do the battle for you. And we were lucky. Seattle Children's, they took care of everything. You know, Seattle… Seattle has been getting a bad rap recently because of some of the stuff that's been going on, like with mold and stuff.

I mean, that's, it's sad. It's, it's unexpected. It's inexcusable. I understand that. But they've got a lot of construction going on. I'm not making excuses for them, but people see the bad side of everything and then they just start hammering on it, you know? And it's just like, you know, for all the little things that are bad that you find, they do a whole lot of stuff that's really, really good.

And one of the things that they do really, really good, they take care of their people. They take care of, they take care of their patients. And you're not just a number, you are actually an individual there that makes you know that they know you're important. They don't treat you like you're just another person in a bed.

And you know everybody at Children's was awesome. You know? And if you can get, find that that caregiver, not the caregiver, but if you can find the medical provider that's actually going to be there to support you in any offered words of encouragement and are emotional with you when you have your breakdowns, then you found a good person to take care of ya.

Griff: Yeah, that's, that's great information. That's, um, you know, it's, it's a hard thing to find to, you know, particularly in the beginning of the process. You know what I mean? It starts usually with the primary care physician type thing, right? You realize you have a cough or something not quite right, and then just progress as any of those, Oh, Holy shit, this is bad.

Then, you know, the, the different doctor interviews through, through oncologist, through, through surgeons. Frankly, it's overwhelming. And you know, I was fortunate to be with Tammey who really knew what she was doing from the start. Like she had done her research, she knew the best course of treatment for her based on data, based on statistics, and that she was set in that, you know, so that, that helped us weed that out quite a bit.

But there's so many that that don't, that are just completely blindsided by, you know, the, the killer diagnosis. Right? And are just kind of left twisting in the wind. So, any resources for people like that, I mean, you know, thank you for bringing those to attention. For sure.

The healthcare experience may not be the same for everyone

Mike: For sure. And, and also, um, one thing that people don't understand or they don't know about, I didn't know about this until I looked into it, is that your, your insurance or your employer also may have advocates for you as well.

You know, if you would want to have, the resources to get stuff done, whether it's for financial reasons or health care coverage or, you know, in my case was just, I needed someone to talk to, to try and get, um… you know, someone to talk to. You know, whether it's for therapeutic reasons or not.

There are, there are people who are a third party representative of the employees, not the employer, who are there to make sure that you know, that you're, you're taken care of without any bias or any type of, uh, animosity or any type of blowback.

So, and then that's how it should be. You know, it's not your fault that you can't come to work because you have people to take care of. And if you get shit on because of that, then, then… and if they, if they want to let you go, or if it's time to move on that, then you have to ask, ask yourself, how important is this paycheck?

You know, and, and, and unfortunately a lot of people go through that. They have to make up their mind as to whether they are going to go to work or we're going to take care of their significant other, or are they going to take care of their children? That's pretty shitty. You have to make that decision.

But in today's world, it could be at any time in time, you know, at any point in time. But yeah, man, I don't think you should have to make that decision. So I'm really glad that Washington State is taking the right direction and letting people pay for FMLA time off, you know, through their deductions, starting the first of this year, or I think it was this year, but, uh, you know, FMLA only guarantee that you had a job and they didn't have to pay you and you have to take your PTO first.

But at least now, at least now you have some type of stipend coming your way because you're actually paying into a program that's actually similar to your, uh, your insurance. So hopefully, uh. Hopefully we'll start following other country's rules or their guidelines in regards to like time off or maternity care or paternity care or the long-term care, whatever the case may be… because you know, man, being a slave to the grind really sucks.

Signing off

Griff: Yes, it does. It does. You know, it's just, again, one more thing, one more critical thing to add on top of, you know, potentially losing the, one of the most people that do, excuse me, one of the most important people in your life, you know. So, yeah, absolutely.

Right, and thank you again for the information and, um, just a fricking rad interview, man.

Mike: Thank you. If there's anybody out there wants to check out some of the Zach cancer videos, if you find me on YouTube, you can find me. MJ, which is my first two initials for Michael. John. And then Baltierra, which is B as in boy, A, L, T as in Tom, I, E R R A, M J Baltierra, that's on YouTube.

If you want to check out some of my videography stuff that's at mikebaltierra.com and also you can find me on Instagram at @MikeBaltierraPhoto.

So those are the three ways you can find me online. And those are the three places I'm always going to be responding to you. And if you need to get a hold of me, um, there's a contact form on my webpage where you can just send me an email at hello@mikebaltierra. com.

Griff: Alright. Awesome, man. Thank you very much.

Mike: Yep. Sure. Appreciate you having me.

Griff: Again, I'd like to thank all our listeners for joining us and we will see you next week.

Remember the conversations you hear on the show are based on unique experiences and varying diagnosis. And we all had our own medical teams. We are not giving medical advice. So if you hear something inspiring, please talk with your providers.  

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