In this interview, I speak with Craig Howe, my close friend since high school, about the day he was told he had a few months to live. That fateful day and its diagnosis – a form of non-Hodgkins Lymphoma, stage four – was over ten years ago. Join us as he tells of his remarkable and at times humorous journey, and what he learned and observed about himself and others along the way.
Phil Rice 00:10
So my name is Phil Rice, and I am here interviewing Craig Howe who is… he and I met so so long ago. We were both in high school. So we met there and just kind of had an instant rapport, where we felt like we were on the same page. We then were roommates in college at various points. And, you know, stayed very close then and at one point our saying, Craig, if you remember was, “We’re the same guy.” I’m censoring that a little bit. Yeah, we were a little more…
Craig Howe 00:47
Phil Rice 00:48
Yeah, we were college. And I think I think to at least some degree in terms of shared experiences, and arriving remarkably, at the same opinion, so many times, or observing the same thing, or noticing the same things. Yeah, it did feel that way. Truth is time has shown, we’re not clones of each other by any means. We still have a lot in common. But, you know, we are our own people with our own opinions and experiences, but our lives have overlapped a lot. And we’ve stayed in touch over the years, more or less. And, well, the time in your life that we’re gonna be talking about today is began when we were both working for my dad’s company in various capacities. And there came a point where you, forgive me, because this is quite a few years ago now. But you, you were experiencing some pain in the abdomen or back area?
Craig Howe 01:57
Phil Rice 01:57
I wasn’t sure what it was, lower back, was it? Okay. And you weren’t sure what it was, but it ended up being more than just something about it was concerning enough to where Hey, this isn’t just I pulled a muscle or I ate something weird. The pain I think maybe that’s all it came down to is the pain was intense enough to where… Okay, we got to see what’s going on here. And the next thing I know, you’re sharing with me that you’ve been given a diagnosis that basically says, if you don’t do anything, you’ve got months. And it was quite a shock. For me, and I’m sure for you and your wife and your family. And I’m going to kind of hand it off to you at that very awkward point.
Craig Howe 02:47
Phil Rice 02:48
Because at that point, really, my vision blurs. I don’t I don’t, I didn’t know, much of the behind the scenes details, but I knew that, I knew my friend was in some real trouble. And, but and yet, here you are. So maybe we can just talk a little bit about, you know, from around that point to you know, what got you here.
Craig Howe 03:12
Yeah, there were actually it was May 18 2007. So that would have been 14 years this week.
Phil Rice 03:21
Craig Howe 03:22
And so well, that was the diagnosis day. Several weeks before that, I started having low back pain, it was like, if you feel back at your waist, where you can kind of feel your pelvic bone, it was kind of right in there on the left side. And so for some reason, it would always seem to flare up on Friday, I would get to Friday, and that would start to hurt. And then I would kind of just be down for the weekend. And so you remember my role in I.T. at Rice. So I have there would be a bunch of tasks that I would keep list throughout the week of things I wanted to do on the weekend when no one was there. And I would get to Friday, and that would happen. And I would be down for the count, trying to get over it. Maybe I can get in there Sunday, whatever. So we started, we had a chiropractor in Naples. And we started, I started going to him but that wasn’t helping. And I don’t know if you remember but at the same time, Mike Asbra was going through the same thing. The COO.
Phil Rice 04:41
Craig Howe 04:42
And so we would compare notes and he found this masseuse out in Cape Coral, and I went and saw her seemed to help but then it would come right back to a Friday. And so I went to doctor I can’t remember where he was. He was out in Lehigh or something. He did an X ray. He just said it was a pulled muscle, but I could not remember doing anything that would have pulled a muscle,
Phil Rice 05:10
Right. He said that even after doing an X ray?
Craig Howe 05:15
Yeah, he looked at the x, the X ray didn’t show anything.
Phil Rice 05:18
Yeah, I was gonna say it must not have shown anything.
Craig Howe 05:20
Yeah. So finally, that pain on Friday turned into these attacks, which I would have at the office. And I would have to just close my door, I’d feel like I was gonna die. I’d lay down on the floor. And it would take about 20 minutes, and it would pass. And when I got up, the sweating was so profuse, it was kind of like a chalk outline of sweat on the carpet. But once it would pass, I would think, you know, your mind… Once you pass out of that episode or dilemma, you’re questioning how severe it was. You’re questioning was that really as bad as I made it out to be? So I finally told Kristen, we needed to find a sports medicine person that I needed some kind of a rehab, there was something really wrong with my back. And she found a guy in Estero, he actually worked with the minor league hockey team. And so I went to see that guy on a Wednesday, and that would have been… because then after that seven weeks of build up where it progressively got worse… man, what would that have been? That would have been the week before the week of the 18th. So that would have been on a Wednesday, whatever that was. And I went and saw him, told him everything. He said, Well, we’re just gonna work together for a few days. And if we don’t see some progress, then we’re going to escalate. So I went and saw him Wednesday, Thursday and Friday of that week, and he just gave me some, I started having problems getting out of bed in the morning, and I would have to crawl to the bathroom kind of a thing. So he gave me some techniques on how to get up how to move and take care of the back. And then Friday in his office, middle of the day, I had one of those attacks while I was waiting on him in the room. And so I was on the floor laying on the floor when he came in, and he just kind of pulled up a stool and sat there and looked me in my face and he was just kind of like, describe for me what you’re feeling, what’s going on, yada yada. He just kind of went down a checklist.
Phil Rice 07:43
Craig Howe 07:44
And so that’s when he decided, yeah, you have to have an MRI. And come to find out later, he actually stretched the truth, maybe falsified the truth to get me the MRI, which I’m glad he did. And so he had me scheduled for an MRI on Monday. They cancelled, pushed it back. They were too busy. Tuesday. This was in Fort Myers, by the way. Okay, so I go it’s seven or 7:30 for this MRI. The guy does it. And I can tell something’s wrong. By the way he’s acting because he has me… He like does it again a couple of times. And then you can always ask for a CD. He didn’t want to give me the CD. He kept… he had these excuses.
Craig Howe 08:38
So I leave there. And you know, he’s acting like, very nice, like the way he’s handling me. So I leave there and come back to work. And I think I went to lunch, I was at lunch. We’re living in Estero. And so I went home for lunch. And while I was there, that sports medicine guy called me and he said, Hey, what are you doing now? So I’m at lunch. He’s like, yeah, I need you to stop by the office. So I stopped by on my way back to Rice. And as soon as I get in the room, he just comes at me really hard, like, third degree.
Craig Howe 09:26
Like, what’s going on? Who are you? You know, that kind of thing. Like, what are you been into and blah, blah, blah. And in retrospect, I think he knew how serious it was. And he was trying to find a way to distance himself from me, like he was trying to… He was trying to find something that I was into that would put me at fault so he wouldn’t have to, I think, feel it emotionally.
Phil Rice 09:58
Craig Howe 10:00
So I didn’t get defensive. I was like, you know, dude, I don’t know what you’re talking about. He was looking for… the way the disease presents in the beginning, if you don’t know what it is you haven’t biopsied, it’svery close to AIDS. And because of the immune system, and it has the lymphatic system. And so there’s a family of cancers. And so that family, there’s a dividing line between that and a disease like AIDS. So he was looking for intravenous drug use, promiscuity, all this kind of stuff. So I convinced them, none of that’s at play. And so then you just see his countenance drop, because he doesn’t have any of those crutches to not care about me. So he tells me that it’s serious. At that time, they said, there were like, three tumors on my spine, and a doctor would be calling me. And his was the first call where all of a sudden, there’s this chain of when you have a serious illness, doctors start calling you, you don’t have to call anybody. And so that afternoon at work, I got a call for an appointment for a neurosurgeon the next morning, 7:30, Wednesday. And so I go see that guy. He’s in Estero. Nice guy. And he was trying to show me the pictures, and he couldn’t get the software to work. And I remember standing up off the, you know, you sitting on that silly medical bed, I remember standing up off that bed and I said, Can I take the reins for a minute? And I took the mouse and I questioned him on some things that he wanted to look at. And I went through menus, I ended up finding what he wanted to show me. And I went ahead and operated the different things, he would tell me ways to manipulate the screen. And so it was just kind of a funny thing.
Craig Howe 12:08
So, it turns out it was two tumors, one at L2 and one at S2. And they were in between the vertebrae, and they were, the one at L2, you know, when you get down into the S region, the sacral region, there is no spinal cord. And the L2 there is and it was actually, the tumor was pressing in on the spinal cord. And so what I found out later, was it was growing at 25% a week. And so for some reason, like clockwork, on that Friday, it would be pressing in on that spinal cord. And so I would have all those symptoms and feel all those things. So he tells me we need to biopsy this. He didn’t want to venture a guess what it was, he thought the lymphoma family, but he wasn’t sure. So I got a call that afternoon, scheduling me to come in to see another guy up in Fort Myers. And so that on that Thursday took most of the day to where they actually went in with a needle and biopsied both. And so, and by the way, this is in season so traveling to Fort Myers and getting back to Bonita springs was kind of a nightmare. So I get back to the office. I got a call Friday to come in and see this oncologist. And at this point, my mental file on cancer is very thin. I don’t have any idea how you look for doctors. I don’t know what any of the questions are. I don’t know what the different special… I don’t know anything. And so I get this call to come see this guy. This was also in Fort Myers very nice building. And Kristen went with me and we waited. It was late in the day. We waited a long time we finally, this guy comes in, and he didn’t talk a lot. And for some reason, once – I experienced this the whole time – they were fascinated with my crotch. I don’t know why. Man, they would spend so much time on my nuts and there was… I don’t know, maybe I got a slew of weirdos but it was very strange. This guy comes in and puts me in the stirrups and just spends a long time on my junk. And I’m kind of looking at Kristen and she’s just kind of, you know, looking the other way. So he wheels away and snaps off the gloves and he’s sitting there on a computer and I’m putting my pants back on and I’m sitting there. And he’s still not talking he’s just paging through things and looking at things on the computer. And so like I said, cancer file’s thin. So all I know to roll off with is how long do I have? You know, I’ve seen that on TV. And I’m expecting Oh, no, no, no. You know, I’m just expecting something like that.
Craig Howe 15:22
He just turns his head and looks at me and says three months and goes right back to his screen. And so I turn and look at Kristen, and we just kind of looked at each other like, alright. And so I’m like, so what do we do? And so he, it’s at that point, basically, what he’s looking for is he’s looking at, what he was in the computer for, is he’s looking for the different families where whatever I have would possibly fall, and he’s looking at protocols. That’s all he’s looking at. And so is he, the guy is somebody else, the specialty? Where would I be treated? That’s what he’s, he’s just boom, boom, boom, he’s… He wasn’t a bedside manner guy, which I learned later, that kind of doctors that I look for. He was the science guy. He paints my numbers. And that’s fine. There’s a place for those doctors. He’s a stats guy. I prefer to look for a doctor who is a jazz musician. I want him to know science, but I want him to be an artist. Okay, I want him to play off the page. So I didn’t know that at that time.
Craig Howe 16:33
So I waited until he fills us in and I said, then he starts to talk. And he says, you know, we’re going to follow all the protocols out of MD Anderson, who is kind of the best in class, they kind of set the standard of research, they’re [indecipherable]. He’s like, we’re gonna do that yada, yada. He’s like, you know, your cares, you’re gonna have the best of care, whatever. And he starts talking. And so the only other question I came off with was, What would you do if you were me? Because I’m thinking second opinion, but three months is kind of a clock. So he says, I would get out of the state. And so he said, you’re fairly young, he’s like, we’re gonna follow all the protocols, but we’re used to treating older people, and you’re a young guy. So he’s like, if I were you, I’d want somebody more aggressive. It’s not that we’re not aggressive, but we’re going to follow the plan. And we’re used to the slower pace. So he’s like, I’d get out of here. And I was like, well, like to where? And so he kind of names across the country, the major places to go, there’s like Sloan Ketterling. I think in New York, I think that’s where it is. I didn’t really pay attention to that. He mentioned Northwestern in Chicago, he mentioned Vandy, MD Anderson, and he just kind of went across the country. And so I said, Well, my jobs here, my insurance is here, how, how would I do that? And he, again, didn’t really have any sympathy and just was like, people do it all the time. So he left it with us, you know, let me let me know what you want to do. If you wanna come into the shop we’ll work on your body, whatever. And so we left just kind of in shock.
Phil Rice 18:27
Craig Howe 18:28
So we get in the car and season traffic again, driving back to the office, and I called my folks. And I just let them know, what what was going on.
Phil Rice 18:41
How did that conversation go? Were you straight to the point too…?
Craig Howe 18:46
I was straight to the point. They knew that I’d been going to the doctor, they knew what had happened that week. They knew I’d been in pain. Okay. And you know, you’re going to an oncology appointment. So everybody’s kind of wondering, you know.
Phil Rice 19:05
Ok, so they already had a context from your previous updates.
Craig Howe 19:10
Yeah, they had a context. I think everybody’s expecting benign, but yeah, right. So I got straight to the point. And it was a one sided conversation because they were very quiet. And I remember at the time being disappointed at how quiet they were. I could tell they were emotional. You and I have talked about this before and in the sense of when your parents are religious. They’re really reactions to certain things, you expect there to be some dividends for that commitment. And so when they were silent, I was kind of stunned that they were so floored by it. And so the conversation just kind of wrapped up and that was it. And Kristen and I just kind of drove back to the office quiet. What was strange, she and I weren’t really devastated. We were just quiet we were… there was…
Craig Howe 20:31
You know, when you’ve worked really hard at something, especially physically, and you’re worn out, and you get home and you get cleaned up. And you’re fed, and you sit down in like a comfy chair or couch and you just feel that complete contentment, that relaxation, that… Everything that needs to be done is done. And you’re just kind of relaxed, you feel good, you’re not unhappy. You’re not overjoyed. You’re just super content, like, you know, relaxed. That’s kind of how I felt. And I think you had made a comment around that time. You said something like: you seem relieved. And I did feel a lot of sense of relief, because I knew what was going on. And so even though I was on the clock, or as, you know, I… I knew my expiration date, right? But I was relieved because I knew. I wasn’t chasing this uphill battle.
Craig Howe 21:55
So we get back to the office. I tried to do some things. And I was just kind of in that mode of my mind flashing off at things that needed to be taken care of and whether or not I should tell somebody, whatever. And I think it was around that time that I set up something with your dad to come to the house. So that was a Friday, I set something up where him and your mom were going to come to our house the next day, that I needed to talk to him. And so, in the back of my head, I was still bothered by my dad’s… that conversation. And so we left the office, I think it was like around 6:30. We drove separately.
Craig Howe 22:47
So I left the office, and I called my folks back. And so they answer the phone. And the only thing I said, and then we got off the phone was… and I wasn’t this emotional all the time… but losing my dad, it’s in a different light. They answered and I said “I need to remind you that this isn’t about where I end up. It’s about how I journey between here and there.” And they were quiet again. And I just signed off the conversation.
Craig Howe 23:43
Well, before I got home, they of course had been, I don’t know who all that they were telling the rest of that day. But before I got home, my cousin called me. And at the time he was leading the release or had led the release for a very successful drug that I ended up having called [indecipherable]. And so he called me and he said, “Hey, I heard about what’s going on. If you can be in Chicago Monday, I can have you in to see one of the world’s leading specialists in lymphoma.” I think she had been in Cambodia at some conference speaking but she was coming back that weekend. And so he’s like I can have you in there Monday. Well, at the time, I’m thinking what, I’m just, what, Chicago? So I said, Well, let me get back to you. Let me think about it. And but that was what the guy had said get out of the state. And so I’m thinking okay, well, that’s not one of the hospitals he mentioned. It was Rush University Hospital. I was like he didn’t mention that. But if she is a specialist, that’s what he’s talking about. So we got home.
Craig Howe 25:02
And then the next day, your folks came over in the afternoon. And I just told your dad what was going on. I think I remember I apologized. Because I said, I don’t know what’s going to happen, but I’m going to leave you hanging. And he told me, of course, that health is most important, focus on me, whatever. Do what you have to do. And so I kind of told him about my conversation with my cousin. And he was like, you know, you should go. And so after that conversation, the next, the rest of that day, Saturday, and Sunday was just kind of planning how am I going to get up there and I, my dad had a bunch of points. And so they got me on a plane Sunday, I flew up there. I don’t even remember the flight. I remember I was stressed. Because of the episodes that I was having more frequently. I was stressed about being trapped on a plane. Got to Chicago, went to, my brother lived about an hour south of Chicago. My folks were in Peoria. So go to my brother’s house. Monday didn’t work out. But I spent Monday working with Kristen over the phone. She’s in Florida, gathering up all the records to get them to Chicago.
Craig Howe 26:23
Met with that doctor Tuesday and got kind of a good news bad news scenario where she said, Yeah, the good, you know, she didn’t say it like this. This is my recap. The good news is it’s not three months. The bad news is it’s two months.
Phil Rice 26:42
Craig Howe 26:43
And so the way it’s framed a lot is, you know, two months if you don’t do anything, well, the way it was in my situation was you have two months. We have a shot at one treatment plan, one strategy. And in two months, we’ll know if that works or not. I mean, there’s not a whole lot of time. So what I learned, you know, what I learned later about this disease is: usually, you die. So there’s a few different forms, the form that happens in Africa, the endemic form, they die in a matter of weeks, they get a tumor that’s in their jaw, because this Burkitt’s Lymphoma likes to move into the nervous system, which is a closed system. So it gets in the jaw moves quickly to the brain, they’re dead really quick. It’s called the sporadic form here in the US, which can take all different forms my subgroup, you get them in your back or on your spine. And I didn’t realize how aggressive at the time. And so my doctor started the treatment, playing jazz, like I referenced before. And you know, at the time they do the bone marrow to find out, so I had 40% involvement of bone marrow, I had the two tumors. They checked my spinal fluid. There was nothing in there yet, which was good. So basically, she said, we need to start right away. And so this was Tuesday.
Craig Howe 28:30
So I was admitted the next day Wednesday. They put in the port. And then I was in the hospital Thursday, they were supposed to start treatment. And that’s when you know, Kristen didn’t go to Chicago with me. She’s still in Florida. My brother had to go back home, go to work. My folks had to go back to Peoria. And so Thursday, I’m in the hospital supposed to start, I don’t think they actually ended up starting treatment until the wee hours of the morning on Friday.
Craig Howe 29:07
And I had another MRI. I can’t remember if that was Thursday or Wednesday night, I think Wednesday night. It was like, and I have some problems with claustrophobia. And it was like a two hour MRI.
Phil Rice 29:21
Oh my goodness.
Craig Howe 29:21
I don’t know what was going on.
Phil Rice 29:22
Craig Howe 29:24
So I’m laying in the room, outside my windows, the United Center where Jordan played, or the house that Jordan built, I guess. So prior to that I always had something to look forward to, another appointment another this, another that. That was the moment where I’m all alone, it’s quiet, and there’s nothing else to look forward to, it’s just starting. So that was probably the first time that I felt trapped, because in my head, I had this picture of when you get locked into that roller coaster car and you hear the bar come down and lock. And then the gears are clicking as you’re climbing that ascent. And I realized I am locked into this thing, no matter what happens. If things go well, I’m locked in for the next year, two years. If they don’t go well, I’m still locked in, there’s no way out. Like I could have something miraculous happen and I could be healed in that moment, I’m still starting the ride, and they’re still gonna put the needle in.
Craig Howe 30:31
It took off from there, I went through eight months of chemo, they would check my spinal fluid regularly. And I had 10 rounds of chemo shot in my spine. After I want to say the second cycle, they said, Hey, I can’t remember the second or third cycle when they reviewed, and my marrow was clear. And so things were looking up, they were looking positive. So we got the answer we wanted that, hey, it’s not going to be two months. It’s responding to treatment. But I still finished up.
Craig Howe 31:15
Now what was supposed to happen, I was supposed to get a bone marrow and stem cell transplant. So there’s six levels of chemo as far as one being the lightest. And it just gets more and more toxic or dramatic. First three levels are all chemo, I think the fourth level’s chemo, that’s the most toxic, that’s what I wound up with. Level five would be where you add in radiation. And level six is where you do the full on transplant, or any combination of any of those including transplant, I was supposed to get a transplant. The way that worked out was about the time we got to that third cycle where they wanted to do that. Insurance said you can’t do it at Rush, you’ve got to go to an approved hospital. So approved hospitals was like Northwestern, MD Anderson. And so as important as the treatment is the interval of treatment, you know, staying on. So I did go to Northwestern. And I saw… so my doctor was in charge of the hematology department at Rush University Hospital. I went to Northwestern and saw a guy who was I don’t think attending maybe he was a fellow in the program. And so I saw him, he questioned me. And basically, he was like, you know, I don’t think after looking at everything, I don’t think you need the transplant. I think you continue on, but he was more focused on talking about I don’t know why you’re at Rush, you could come over here we can offer everything, it was like a sales pitch kinda. And in the end, and this is just my feeling on it. In the end, I feel like he enjoyed being able to veto my doctor who was in a higher position. So it kind of fell through.
Craig Howe 31:46
By the way, that was another place where he sent this young guy who was I think, an attending or something and spent a crazy amount of time on my nuts again.
Phil Rice 33:35
Has anyone ever explained that to you?
Craig Howe 33:37
No. I don’t know if I was just continually abused or what I mean, he was doing like these tiny circles. I mean… to the point where I finally raised my head and I was like, are we about done? And he went? “Oh, yeah, sure.” And ended. So I mean, what was happening there, right?
Phil Rice 34:04
Oh, my goodness. Wow.
Craig Howe 34:08
Anyway, all of that, to… I was like, well, we just have to keep going. So we just kept with the chemo, which did work, it got harder and harder. The risk? Well, the risk is either way is the infections and I was very fortunate that I only got infection one time. It was around cycle six. And part of that was because of my family. So I was living at my brother’s house. And so my family was super diligent with, before I would come home they would clean everything top to bottom. There was a bathroom that I used that others didn’t. Kept my food separate, I mean they were just super diligent. So I think that went a long way to prevent me from ever getting sick.
Phil Rice 34:59
Now just to clarify the infection risk is because your immune system just gets destroyed by that treatment is that the long and short of it?
Craig Howe 35:06
Yeah, I would… And this happens to people, most people on those first three levels are outpatient. I would go in for a week at a time into the hospital to get my chemo. And then after that, it’s just about all your counts dropping, it kills everything off. And so when you bottom like that, you have nothing. So I got an infection, or it was around October. And the way they’re hitting me with my chemo, they’re hitting my marrow, so that hits platelets, platelets stop bleeding. And so I had issues. Anytime your white counts drop, you get what’s called thrush, which is anywhere from your mouth all the way through the tract to the other end. And a lot of people get these sores in their mouth. I luckily never got that. But I had problems in my intestines, and there was bleeding. And so when my counts dropped, I have no white counts, and then my platelets are low. So there’s no clotting. I ended up, I got a fever, I went in the hospital, I was in there, almost a month, about 22 days.
Phil Rice 36:10
Craig Howe 36:10
And it was every day, that would give me two bags of platelets. So a normal platelet count, the minimum is about 140,000. Mine got down to about five. And so you… 5,000 not five, you you just start to bleed everywhere, internally, kind of. Anyway. So every day, I would get two bags of platelets, they get me up to about 38-40,000. And they had me what I call pooping in a hat, they have this hat in the toilet, this thing looked like a reverse hat. And then, it’s a teaching hospital. So they have these doctor posses that come around. So all day long, there would be these medical students that would just file in to go into the bathroom and take notes looking in at my fudge ripple poop. And then walk back out. Very strange.
Craig Howe 37:01
By the way, a fun fact about teaching hospital. So the shorter the coat, the more new they are. So like if they’re just wearing like a white blazer, basically, they’re they’ve just started.
Phil Rice 37:14
That’s really a thing?
Craig Howe 37:15
Yeah. And the longer the coat. They’re like, then they’re an intern, and they’re an attending, a fellow and then you know, whatever else is above that. And so you would just see all different levels of coats, just filing into look and take a note. It was very very weird. But anyway, that was a long time, but that was the only infection I had. And I think a lot of people deal with it…
Craig Howe 37:41
Oh, another fun fact I learned. Because in between hospital stays, I would have to go to the clinic two or three times a week. And they would you know, give me platelets, they would give me blood they would… after the spinal sticks, sometimes that hole would not heal up. And so you’re leaking spinal fluid, you get spinal headaches. And the treatment for that is they would stick an IV in and hang a bag of caffeine to cause the inflammation to seal that up.
Phil Rice 38:14
Craig Howe 38:14
Anyway, I would go into the clinic two or three times a week. And what I noticed – anecdotal observation – is that people’s families would bring them lunch, and they would bring them soup because on the fourth floor, there was Au Bon Pain, Pan or some restaurant like that. And they had this whole line of all these crocs of soup. Well, those are community basins. So who knows how many hundreds, maybe a thousand people would open those and dip, ladle. And so they would bring soup to their family member. And I think just about every time I would see somebody eating soup, before it was time for them to go, they would start to get an infection or crash or have to go to the ER and get admitted because they would end up getting… so…
Phil Rice 39:02
Craig Howe 39:02
I ended up staying away. I still, unless I make it myself, stay away from soup.
Craig Howe 39:09
Anyway, wrapped up. So there’s a lot in those experiences. But I finished up in December. I ended up finishing up all of the spinal chemo, I think by February and then was released sometime in March or April I think. And I ended up back in Florida and I came back to work on the 19th, so that was the 18th that I kind of left, and I think I started back on the 19th? And in my experience in my head, you just pulled through. And I started to notice stories of cancer. There was an actor that I followed [Andy Whitfield]. There was a show, Spartacus, the first season was good. He was in there.
Phil Rice 40:08
Yeah, I know who you’re talking about. He had the same kind, the non-Hodgkins, right? I followed his story quite a bit.
Craig Howe 40:13
I don’t know exactly what kind but he was also in his back. And he passed. Way healthier dude than me. And so things like that were very jarring to me. I couldn’t quite put my finger on why they were so impacting and emotional, but I was so, I mean, jaw hit the floor shocked when I found out he died. Because I thought you just pulled through. But I think there’s a lot of factors in that. And one is family and that support net. I think doctors are important. That’s about it. So that’s a recap.
Phil Rice 40:57
Having health insurance, big topic nowadays. Health insurance was a little bit, you know, less tampered with system back then. Wasn’t perfect by any means. But did the insurance company – other than, you know, you shared the one story of them kind of insisting you go to another place – but did they do right by you, so to speak?
Craig Howe 41:22
Yeah, there were there were some things I had going for me. So first off the, you know, I had the first guy, and I haven’t shared his name, because I don’t want to rat him out. But, you know, he admitted to me that he had to, he knew I needed an MRI. And so he wrote what he needed to write to get me in there. If there had been any delay in that, later what we found out with the two months, you know, if I had had to wait or go through a bunch of other things…
Phil Rice 41:52
Could have been it.
Craig Howe 41:53
Yeah, it would have been it. And so fortunately, I had a guy that knew the system and did what he had to do. The other thing that I had going for me was I had done an HSA. And so we had to meet that deductible, which obviously, you know, HSA is it was large, but the lion’s share that bill got covered by that. And then, well, and then I had work looking out for me. So I think when I first left, your dad kept me on my insurance, I think for a month or two. But then there was open enrollment in August, and Kristin was still working for you guys, even though remotely. Maybe one of the few or first attempts at remoting.
Phil Rice 42:45
Yeah, that was before, that was a thing. Yeah.
Craig Howe 42:47
And so I was switched to her insurance. So in the beginning, that first big hit was HSA, which is you know, they pay whatever it is they pay 80% or whatever that was after a big deductible. So most of it was cleared off. And then I switched to her insurance, which was a PPO. And somehow the combination of those two, I think when I got out, I don’t remember the total. And I could be incorrect in this. I want to say maybe my debt was ten grand. Maybe?
Phil Rice 43:21
Craig Howe 43:22
It could have been between 10 and 20. But I just remember thinking, Okay, that’s not a lot.
Phil Rice 43:29
Craig Howe 43:29
You always hear 100, 150, whatever, right? So yeah, it wasn’t huge. The other thing is, you can’t go bankrupt over medical bills. Like they can come after you and stuff, but it’s not.
Phil Rice 43:49
They can’t like do a lien or something like that.
Craig Howe 43:52
Right, right, it’s not like a credit card or, you know, defaulting on a mortgage. So you know, you can put it in perspective, as you get your legs back under you, you know what I’m saying? And usually with medical bills, as long as it’s like, Okay, I’m gonna send you $50 a month. Even if that doesn’t look like, they leave you alone, because you’re like, Look, this is what I’m doing. And you’re making a good faith effort. So medical bills are different in that way. So when I see the entertainment, like TV shows or movies talk about how people are buried in medical debt and things like that with bankruptcy, I just, that wasn’t my experience, and it’s not my understanding of how it works. So I was fortunate, the short story there is I was very fortunate that I had the HSA in the beginning. I’m not saying that’s the be all end all because switching to the other insurance helped me too for the rest of it, the duration.
Phil Rice 44:56
It seems like back then it was less common or maybe just less of a headline to hear about married couples or, you know anyone other than single individuals not having health insurance or not being able to afford health insurance, I’m sure it was there. It just wasn’t talked about much. But in the era of, you know, Obamacare and post that it’s kind of shone a light on those stats, and then with what happened to private insurance rates after all that government meddling, a lot of people that did have insurance before couldn’t afford it. And just, it makes me wonder, we probably don’t have any way to know for sure, but it just makes me wonder what would happen if you know, someone who didn’t have insurance ended up… well, first of all, would they even get diagnosed in time? You know, but then what would they do? Like, I just makes me wonder what would, what would happen there would a place like Rush, you know, welcome someone in, if they didn’t have… insurance is typically the way you have ability to pay, you know, so yeah they, medical bills can’t, you know, can’t put a lien on your home or make you actually bankrupt etc. But I think where the trick would be is that if you didn’t have some means to pay didn’t have a company like that, it could be challenging to get the treatment in the first place, that they do have the ability to refuse service, I guess. It’s not very common. I don’t think? Not in this country, I don’t think that happens very often, much as some would like to portray it that way.
Craig Howe 46:35
In that event, I think a person in that situation would go to the ER, like, let’s say they had back pain like me. And I think they would have at some point been diagnosed through the ER, then somebody in the hospital would have come to talk to them about payment. But I don’t think they would refuse them. You know what I mean?
Phil Rice 46:57
Yeah. There’s a narrative out there that makes it out like, well, that’s what the private medical industry would do. But the truth is, I just don’t think it happens very often. You know?
Craig Howe 47:05
Well you also have… I, you know, I remember there were all kinds of, I mean, it felt like a huge mountain to climb, it felt like a huge unknown. But, you know, we started reaching out to things like the Leukemia Lymphoma Society. And I don’t remember, you know, I don’t remember how, but they sent a check. And I mean, this is just, you know, nothing we’ve ever had connection to.
Phil Rice 47:30
Yeah. Wow, I didn’t know about that.
Craig Howe 47:32
And they had resources if we needed to contact or questions or whatever. So there were, depending on your cancer, I know that there’s associations like that. Not for profit, things like that, that will help you. We got money from different places that were just charities, because hey, you have this and whether or not it’s you know, $1 or $500, or whatever it is. There’s something that does something to your psyche, that there’s somebody out there, a stranger that cares.
Phil Rice 48:09
Craig Howe 48:10
That understands. So the that first paint by numbers doctor that I saw his words and people do it all the time that kind of came back to, Oh, yeah. Okay. So there’s, this has been blazed before. There’s other people going through this stuff.
Phil Rice 48:31
Well, you and I both were raised in a faith tradition. Both raised Christian, both of us at least from our father on down that’s the way of looking at the world. And and we both retained that, you know, as part of our worldview, I think there were times in in the college experience, and with the philosophies and whatnot we got exposed to that, there may have been questions and stuff like that, but ultimately, it feels like that’s stayed a part of our worldview. You shared some with me during while this was going on, about some of that experience of how that was impacting how you were experiencing some of the hardest, most difficult physical endurance aspect of the treatment. I’m not asking you to unpack that here today. But I’m curious about what role did that play, if any, in how you faced this down?
Craig Howe 49:40
Yeah, that’s a layered question. So I’ll just kind of do stream of consciousness and it may bounce around and I’ll rely on you to bring me back to Earth to make sure it makes sense.
Phil Rice 49:56
Craig Howe 49:57
In retrospect, at the time going through like we’re talking at the time, meaning Fall, October to December range, there was something that happened the year before. In 2006, I think around November, there was a guy that had been a friend of ours from church, believe it or not. And we had done a deal where I bought a car from him from up here in Tennessee, and he brought it down, delivered it to us. And so that Fall, I had called him, we were waiting on tags and the title, that kind of thing. And so it was coming down to the deadline where we were going to have to register the car in Florida, and I realized I hadn’t heard from him. And so I continued to try and call him and email… and nothing. And so, at a certain point, you just kind of realize that somebody has – they didn’t call it this, but he’s “ghosted” me. And so I’m left out of pocket with this car that I’m not going to be able to register. And so I ended up getting pretty angry, and I was calling, you know, bothering his wife at work. I was, I was pulling every cord I knew how to pull
Phil Rice 51:16
Craig Howe 51:17
And there was a day at work where I left early for lunch, because I decided early days of the internet, obviously, but I was just going to go home and mess with this guy’s life. I was going to drop some time bomb, I was creatively destructive, and I was just gonna go jack with this guy. I was in the car. I was taking those backroads from the office out to 41 through the industrial area. And when I got to the stop sign, I’m waiting to pull on 41. I just strongly felt like I heard – not audibly, but in my person – it just kind of felt like, God asked me the question, “What if you forgave him?” Which really pissed me off. And so I pull on to 41. And I’m just thinking about what forgiving him would look like, you know, what if I run into the guy, just based on all the emotion that I had? What if I run into him? What would that look like? What if he, you know, talked smack to me or whatever? If I decided that I actually forgave him, would that hold up? Or would it be temporary to now and then and so I’m, you know how you and I think, I was running through all these scenarios… Could I actually hold up and put this into practice? And before I got to the house, I realized that no, I couldn’t. Couldn’t do it. And so I just prayed. And I said, “I can’t do this. So if this is what you want me to do, then you have to change my heart.”
Craig Howe 53:13
And so I think I was in. I don’t know what car I was driving. I think I was in a small car. I think we had gotten a car from her folks. It was like a little Ford Escort hatchback or something. And so I’m all piled into this car, driving down 41 with tears running down my face, which had to look really weird. But my default settings were changed. My my BIOS was reformatted. And I think, when I look back, if I had not forgiven those seven, eight months before that experience, I don’t think I would have been ready for that experience. And so when that came along, I had the… I don’t believe God is – as once upon a time you would have said – a mean kid with a magnifying glass over an anthill. I don’t believe He gives you disease. But I had this strange feeling, when I was diagnosed and going through it, I felt like I had been trusted to handle it maybe.
Craig Howe 54:33
And I can’t explain it any better than that. But it just was this feeling like, I could deal with that. So the forgiveness thing was important. Another thing that I learned sitting in the clinic, as bad as I felt or as bad as I got, there was always somebody worse. There was one day, I was sitting there talking to this old lady that was in the recliner next to me (whose daughter brought her soup by the way). And so she, you know, we’re all bald, she’s bald, but she turns and looks at me. And you know, I had a port right around my clavicle under my skin, when she turned, she had this contraption, it was a port on her head.
Phil Rice 55:15
Craig Howe 55:16
Which means they, you know, when they drill in your skull, you’re awake. So she had to endure that. And then they attach this port. So she had chemo going directly crossing that blood brain barrier. And that was when I mean, we all know conceptually, yeah, there’s always somebody worse, yada, yada, yada. I think in our world these days, it seems like we focus on people that are doing better than us, you know, the richest 1% or whoever it is, there’s always somebody doing better than me and it’s unfair. Well, my bent in that experience was that there’s always somebody worse off. And when I saw that port in her head, I thought, Man, I don’t know that I could handle that. Clearly, she could.
Craig Howe 56:01
So that started this experience with gratitude. And I think that’s where the forgiveness issue came into play, why it was so important, because I wanted to, I was so grateful all the time. And thankful, which came into play later. The worst experience, and it was actually an experience that, it was the one time that I broke – and when I say broke, I mean, I just couldn’t go on, I couldn’t do any more – was the bone marrow biopsies and aspirations which, I ended up having seven while I was in Chicago. But they, you know, they go in, they’ve got to draw marrow out. And then after they get the marrow, then they drill this like corkscrew thing, and they pull out kind of some meat from inside the marrow to do the biopsy.
Phil Rice 56:59
Craig Howe 56:59
And every time I would go in, they, you know, I would try to say, hey, can’t we, you know, knock me out for this, can’t we do some anesthetic, and they’re like, no, because it’s so quick, there’s no need. But then they would also talk about the last guy who, you know, fell asleep during the procedure, you know, it was always not that big a deal, nobody had a problem with it. But then, and they would hit both sides, they’d position you had to go into this hip. And going in was no big deal, they’d numb you up with lidocaine all the way down to the bone, you could like, little beestings. But then once they got that needle in and they would draw, it would actually pull your leg, because they’re drawing that marrow out. And the pain would start, it would hit you and you didn’t know where the crescendo was going to end. And so it would hike your leg, and then they would get another syringe and they would do a second draw. And that pain would kind of concentrate in a smaller area. And the third draw was just like a knot right in your hip. And that was the agonizing part, the drilling out thing was no big deal. And then after that, 20 minutes, you roll over and you go through another 20 minutes on the other side.
Craig Howe 58:14
So I was in pain all the time, to the point where those marrow visits were the worst thing for me to look forward to. Because I was already kind of at the top, I was already saturated. And so there was one day when I’m sitting in the clinic, and I’m looking out at that door and I have that appointment, and the nurse came, and I couldn’t talk. And she said Are you alright? And I just I don’t know how I communicated to her. But I just pointed at the room and shook my head. And she’s like, you can’t do that today? And I was like, no. And so she went and cancelled it, and got it rescheduled. Canceled part was great. The reschedule wasn’t.
Phil Rice 59:01
Craig Howe 59:02
After it was cancelled. I was I was able to talk again. But I realized I was broken. I reached the end. So for the next week leading up to that appointment, that gratitude thought worked on me. And I thought, How about instead of focusing on what’s happening, I take that time to be grateful. And then that turned into when I’m in the red, when I’m so far down, that I have nothing else that I can cope with… If I choose that moment to give thanks to God, then that would be kind of be a validation. Because a lot of us, and I’m guilty of this now, we live a pretty good life. I mean, there’s nothing really that I need, or want, not necessities. And so it’s pretty easy to be grateful, or give thanks, in that mode. But if I can be all the way, not only at the bottom, but in the negative. And I can take that moment to not ask for anything, then maybe, maybe in a spiritual sense, that means a little more. It’s more of a gift. So that’s what I started to practice.
Craig Howe 1:00:47
So at the height of that pain, what I hadn’t done was prepared anything. So at the height of that pain, I think all I could get out was, “Thank you.” Which had to sound weird. But that became a practice. So as far as coping, I just changed my thinking, my orientation.
Phil Rice 1:01:13
It’s a very different response to that than, I think, what one could call the typical, resentful, “Why me?” you know, reaction to that level of hardship. It’s in stark contrast to that. Did you ever have “Why me” moments?
Craig Howe 1:01:33
Yeah, I’ve been asked that before. I hate to be cliche. But my first thought was kind of more of the “Why not me?” I think initially, some of the thoughts, you know, I got on the internet, which I’ve told people and joked about, worst thing you can do in a situation like that is get on the internet with no thought or guidance, and just bury yourself in trauma. But I was looking at stats. And I think stats are a lot better these days as far as cancer goes. At the time. I think a stat that I found was like one in four men in their life would experience cancer. And so my thought from the beginning was, and it has to do with that “trusted” idea… Hey, I get to be the one, so that three other guys out there don’t have to be, which made it… and you know, maybe there’s something self aggrandizing about that. But it made it a little more palatable for me, that I would rather it be me.
Craig Howe 1:02:46
When my brother asked me a question, when my dad was in the hospital before he passed, we were around the bed. And my brother asked me, based on my experience, would you rather be in the bed or beside the bed?
Phil Rice 1:03:02
Craig Howe 1:03:04
And I would rather be in the bed. And that’s actually selfish. Even though you endure pain and illness, you kind of at some points, just go out of it. But as a family member, a loved one, you have to endure witnessing that. Much easier to be in the bed, from my perspective.
Phil Rice 1:03:31
Yeah, there’s a paradox to that, isn’t there? Yeah. What seems like the obvious answer is, well, you don’t want to be, you know… the harder job is suffering the the illness or the physical hardship. But yeah, maybe not. Maybe not.
Craig Howe 1:03:51
Throughout that time, I was very vulnerable, you know, vulnerable to infection, I was very weak. There were times when I’d have to get out of the car to walk inside or to the hospital or the clinic. Or sometimes when I would, at my brother’s house, finish a shower, and the walk back to the bedroom seemed like a marathon, I couldn’t make it. And I would have to call out to Kristen and somehow she would have to get under my shoulder and help carry me in to drop me on the bed and I’d pass out for a few minutes. As vulnerable as I was what I realized, everybody is going to be that vulnerable at some point. And it might be in the few seconds before you get hit by a bus, or it may not be until you’re 80 or 90 and you’re vulnerable in a home or a care facility, or whatever it may be. Going through that, that’s what I thought about regularly is I had never paid attention to those who are weak or vulnerable. And so I would look at people – not at the time, there wasn’t social media – but now when I see people on social media that are just, they seem to be cocky or arrogant, or they’re the kind of people that you don’t want to hear what comes out of their mouth. Or whatever it is, whoever these people are that offend your senses. They may not believe it, but at some point, they’re going to be at that bottom vulnerable stage. And like I said, if I had not gone through that forgiveness moment, to prepare for that, I don’t know what that experience would have looked like, if you’re not humbling yourself, and, you know, realize where you are on the order of things, or how fragile life is. Everybody’s going to have to learn that hard lesson. And so, how much time are you going to give yourself to learn it? Especially before the check comes due.
Phil Rice 1:06:08
I know you’re familiar with Jordan Peterson. I don’t know if you’ve gotten to hear much of his lectures or whatnot. But for me, one of the most compelling ones that he has made is his psychological interpretation of some of the stories of Genesis. And the one that sticks out to me the most is the story of Noah. And his take on that is, whether or not that represents a real chronology of events – I happen to think it does – but whether or not it does for him, it’s: what are we to take from that story? Because it’s an archetypal story, you know, it has survived all this time for a reason. It’s been told and retold and retold. And retold.
Craig Howe 1:06:53
In myth, legend, it’s been archived…
Phil Rice 1:06:56
Yeah. And for him, what he takes away from it is very much in line with what he outlines in his books. And that is that we are all going to face a catastrophe at some point. Similar to what you were just describing there, that low point, you know, we’re all going to face our flood. And the best thing we can do with our lives is to be as ready as possible for that in every way. Ready, mentally ready physically, so that we can save ourselves and our family. For him, that’s what he kind of draws out of the the Noah narrative which I found it’s valuable, I find that I I think about that more, think about things more in that way… One way or the other, you’re right, we’re we’re all going to face our flood. And it takes on a different form. For some it’s a, you know, physical ailment. For some it’s just the hardship of old age. For some, it’s losing a child, losing a parent. These things are hard. Probably more people than we’re aware of are going through something like that, right now.
Craig Howe 1:08:18
Phil Rice 1:08:19
Yeah. Even some of social media’s loudmouths under that veneer. And I can remember a good portion of my life when I didn’t understand or think about that at all. I was one of those arrogant, you know?
Craig Howe 1:08:32
Oh, me, too.
Phil Rice 1:08:33
I still wrestle with it sometimes I think. You know? Probably always will.
Phil Rice 1:08:38
I want to thank you for talking about this. I know it can’t be easy, I wouldn’t think. I appreciate you doing so. And my hope is that someone who listens to this will get value out of it and learn from it. And either as the person who’s facing that thing or someone who’s helping that person down the hallway, you know? So thank you very much.
Craig Howe 1:09:12
Yeah, my pleasure.