Teeter Talk

TT with HD: Bridget Weise Knyal

Totter 2.0 on location:
front porch

[Ed. note: A little less than a year ago, Bridget's husband, Jarrett, died of colon cancer at the age of 44. Around 20 years earlier, a fall from a roof after contact with an electrical wire had left him a paraplegic. He pushed himself around with his wheelchair. A Medicine at Michigan article, which is mentioned in the conversation below, discusses Jarrett's illness in the context of a medical education program at the University of Michign called the Family Centered Experience.]

BWK: [Ed. note: Pre-tottering involved some cat managment issues.] My grandfather, my mother's father, used to, whenever he saw a cat sitting on a hose in the yard, he would get far away from it and just do a little sound, just the minutest movement, and then the cat goes ...

HD: ... oh, he would yank the hose, you're not talking about something with water.

BWK: ... no!

HD: Okay. Yeah, actually thinking about the indoor version of that with rugs ...

BWK: ... yes! Just a very teeny-tiny--the slightest movement is the best.

HD: Yeah, and then they pop straight up. So shall we actually teeter ... ?

BWK: ... are we on?

HD: ... totter up and down? Yeah, we're on. Welcome to the teeter totter!

BWK: Thank you. Can we just totter?

HD: No, you have to teeter as well.

BWK: If you teeter you gotta totter.

HD: Yeah, and I'm curious to see how the application of the silicone to the pipe there ...

BWK: So, you are heavier than me, I forgot about that aspect.

HD: Are you okay?

BWK: Yeah, I'm okay. I feel like I'm not helping. Did you ever try to get the cat on the totter?

HD: Oh, no, we try to keep the cat indoors.

BWK: Oh, it's an indoor cat.

HD: Yeah. So, that is quite a binder that you brought. [Ed. note: The binder was crammed full of health benefits information received over the course of BWK's husband's illness.]

BWK: Yes. That is a big binder.

HD: If you had the binder, that would just about balance us out.

BWK: We could put the binder on. You know what had occurred to me. I was thinking, Could he teeter totter? Probably not, because my husband was paraplegic, and I don't think he would've had the balance to teeter totter, even if he could transfer from his wheelchair to do it.

HD: Actually, someone suggested to me that I should explore the idea of actually making the teeter totter ADA accessible. That was back before I built this one. And I remember saying, Oh, yeah, well, when I build the second one I'll just design it in. That was very easy to say.

BWK: You could say you're grandfathered in--that's the common term for that.

HD: Anyway, I was quite nonchalant in saying I'm going to build a second one some day, and when I do I'll figure out a way to be able to roll a wheelchair up on it. Or something. And of course when the time came to build it, that seemed like too big a challenge to meet. So I didn't do it.

BWK: Exactly.

HD: But that is in the back of my mind, still.

BWK: Well, sometime just to try it out, I could bring my husband's wheelchair. I have two of them right now. I'm going to donate one of them. I'm going to keep one, so that my kids can go around and see what it feels like. And I probably could roll the seat up on here, but if I were truly paraplegic, I wouldn't have the balance, I wouldn't have the stomach muscles to engage.

...

I did a quick look online to look to see what people really say about how to prevent colorectal cancer: what's the official line? You can really not have any risk factors, obviously. Jarrett didn't really have that. He didn't smoke, he ate well--we grow kale in our garden. On the scale of the American diet we are probably stellar. I mean, we are not macrobiotic, but. He did carry extra weight. I think having children, he didn't have as much time to exercise, and I think he got a lot of upper-arm exercise being in his wheelchair and pushing.

HD: You say "extra weight," but from the photographs that I have seen, we are not talking dramatically obese, right?

BWK: Right, I wouldn't say obese. He liked to say he was 4-1 in height, but he was really about 5-9 or 5-10 if you stretched him out, and I bet he was close to 200. Which I think was more than he wanted. He couldn't tighten his abdominal muscles, and I think that's where he carried his weight, right around his belly.

HD: So that is a risk factor, then?

BWK: I don't know if carrying it there is, but excess weight is. I don't like to think back to what caused it, but I can tell you that we did have genetic testing done on his tumors here at the university to see if he did have any of a certain genetic propensity for it. He did not have that. But I wonder in general about people who are disabled--or I should say paraplegic and quadriplegic. They can have a lot of trouble there--gastrointestinal stuff. I think it's maybe because they don't stretch out as much, they are not walking around, wearing their weight across their whole body.

HD: So there's not that mechanical agitation of the GI tract.

BWK: Maybe that, or it's compacted, that's another thing that I thought about. This is not at all something that is documented anywhere--but for some reason I wonder about having a lot of antibiotics in his life. And not repopulating with probiotics. He had a lot of urinary tract infections, which are common also in disabled people. I shouldn't say disabled people, I should say paralyzed people. Spinal-cord-injury folks.

HD: Is that something that Jarrett was sensitive to? Or was vigilant about correcting references to disabled people?

BWK: Here's what he wouldn't say: He wouldn't like "confined to a wheelchair," because he didn't feel confined. [laugh] He didn't feel that he was strapped on, he felt like his wheelchair got him around. I mean, it was like his legs. In an in-group, he referred to himself sometimes as a "gimp." "I'm feeling gimpy now," or he would make a joke at work, or to a crowd that he knew was okay with it, if he dropped something he would say, "Oh, can you get that for me ... I'm crippled." [laugh] Whenever he felt like doing that. Sometimes people can't go there, didn't think it was funny.

HD: But in that situation, he gets to be the judge as to whether it's okay or not.

BWK: Right, he got to set that stage. But mostly he didn't like "confined to a wheelchair". One time he was actually with his mother, trying to get into a restaurant, and the hostess was getting them through the wedged-too-close-together tables and the hostess was saying "Excuse me, excuse me, wheelchair patient coming through!!" There were just things like that, or sometimes people spoke to me, or often people would, as soon as he left, ...

HD: ... oh, we're getting a slight squeak.

But as soon as he left?

BWK: As soon as he left people would go over to me in a restaurant or in an airplane or whatever, and say, "What happened to your husband?" And I would say ...

HD: ... he fell off a roof?

BWK: No, I'd say, "You can ask him if you want!" And sometimes if he just didn't feel like answering, he would say, "I was in Nam!" And when he died last year, he was 44, so ...

HD: ... so anybody doing the math would have known ...

BWK: ... right. But he had a woman come up to him once, when he was out for an exercise push--he did marathons--I'm going to make sure Vi doesn't get my coffee.

HD: Okay.

BWK: Can you let me down? [laugh]

HD: [laugh] Oh, I didn't do the calculation there. Okay, are you going to get on now? This will be fun!

BWK: She'll like this! Oh yeah, she can eat cheddar bunnies, and do this! Now we might be balanced.

HD: Yeah, now you've got an advantage. Anyway, when he was out for an exercise push?

BWK: He was out for an exercise push, really pushing hard, some woman came out of her house and ran up to him and said, "Can I pray with you?" [laugh] And put her hands on him and stuff. And he said, "Sure!" Of course he's thinking, What do you need to pray about? And then she said, "Please help this man from his suffering," and he said, "Look, I'm just out for exercise, you know?" So that's the kind of stuff that annoyed him. Or if he was doing a marathon, doing a race, and sometimes people when he was going up a hill would come up behind him and push him without asking.

HD: Oh, man. That's brutal.

BWK: So he would get annoyed with that.

HD: Something that really irritates me--I haven't actually done a race in a long time, a running race--but you get in like a 5K or even a marathon when people are cheering you on in a well-meaning way, saying, You can do it! You know, that's the thing that really bothers me, because I want to say, Yeah, I know, that's why I'm out here doing it. I know that. You know, save that for people who are doing the 9- or the 10-hour marathon, who are out on the course after the sun has gone down. But come on, I'm a middle-of-the-pack kind of guy.

BWK: If I was on the sidelines I might as well say, "I can't do it!"

HD: You know, reading the write up, I think this was in Medicine and Michigan, I forget the exact name of the publication.

BWK: Medicine at Michigan.

HD: Okay, Medicine at Michigan. You know, you were talking about risk factors and trying to make sense of, Why did this happen? Or, Why was there a probability that it would happen? After the pressure wound was discovered, there was some point at which various tests had been done, and they hadn't found anything, and the recommendation was made to do a colonoscopy. And he put it off--from the write up it seemed like he put it off all of a month or two--so it wasn't like he said, I'll do that later, and then five years went by. But later on it described the "delayed colonoscopy." And it's almost as if an explanation was being sought, you know, Why did the cancer develop this far--well, it's somehow the patient's fault, because they didn't have the colonoscopy immediately, when it was recommended, that there was this delay. In the same way that you know when you read an obituary of a smoker: They smoked two packs a day.

BWK: Yes!

HD: Or a motorcyclist dies in accident: Was not wearing a helmet. So there's an attempt to sort of provide an explanation: if this person had taken control of the stuff they could have taken control of, then there might have been another outcome. Did you read it that way at all that article?

BWK: I don't remember exactly how it was worded in the article. I don't think I heard that particular article that way.

For one thing I want to clarify that my husband's pressure wound was quite unrelated, though similarly timed, to his cancer. He was diagnosed with cancer afterward and any tests that were happening and physicians who are assisting at that time were only about a pressure wound. It was only related perhaps in that because of my husband's GI system trouble, which could be a symptom [of colon cancer]. He would not be able to go to the bathroom for a while and then suddenly really need to go to the bathroom--without being too graphic.

Because he is disabled he did not note that as something that shouldn't be happening to him. I think he didn't go as quickly as he might to get checked out. It's not necessarily par for the course, but can happen.

That kind of stuff happening, he attributed to being, he would say, "a gimp who is getting older." Actually he was sitting on his bath chair to go to the bathroom for longer periods of time, which is harder, and not as good for his skin as his regular chair, which has this specially inflated expensive cushion on it, which the bath chair doesn't. So probably that's the relationship between the pressure wound and the GI problems. Because he had to sit on it over the toilet longer, because he was having these bowel irregularities--that is probably why he got a pressure wound.

But all that said, I think that I don't necessarily feel a sense of blaming [by the phrasing of the article] in that sense. It's trying to distance oneself from the reality of: This could happen to anyone.

HD: Right, you want to basically believe that you have control over your own destiny.

BWK: Exactly. And I think that in retrospect I do think it could have been a matter of those months only because what I know is, if the cancer can be contained to something that is surgical, if you can cut it out, you can probably cure it. Cutting is curing, often. Not necessarily with every cancer, but once it gets into the lymph nodes, it can go anywhere it wants.

HD: "Cutting is curing," is that some kind of surgical slogan?

BWK: No, that's just me saying it. And it's not true of every cancer. I mean, one other thing that I learned very quickly is that every cancer is different. The organs that it is likely to travel to are different. Colon cancer is most likely to travel to the lungs and liver.

My husband's also went the fatty tissue in his abdominal cavity. It's called a peritoneal disease, so he had peritoneal carcinomatosis also. And cancer cells like that--I don't know if it's just colon cancer cells--they love fat. They get into that fatty tissue around the abdomen and go crazy. And he had what's called seeding, so it was sprinkled all through there. And it's not all in a clump that you can just slice out. Once it's in there, chemotherapy, which is most often intravenous--you know how there is a block, where things can't necessarily get to the brain tissue?

HD: It's the blood-brain thing?

BWK: There's a barrier, right, the blood-brain barrier or something. So in the same way, intravenous chemo could not reach the fatty tissue and help my husband's situation.

HD: So did they just blast that with radiation then or what?

BWK: No, radiation works in certain situations and not in others. It has to be pretty targeted, it can't be diffuse. So when he was first diagnosed, he had a big tumor basically blocking his sigmoid colon, which is the lowest part--not the rectum but a little bit above that.

So they removed that, and removed the lymph nodes around it--they take out a perimeter of it also to see if there are cells there. So the first big blow for us was when we found out that it was in two of 16 lymph nodes. You stage the cancer that way. So for me, getting back to the, Did he wait too long? Probably. I don't know if anyone can say how quickly the cancer went from the big tumor in his colon, which was sizable, to the two lymph nodes.

But my impression is once it's into the lymph nodes, it can travel through the other organs. Because they remove the lymph nodes with the cancer cells in them, you could have a hope, probably 75-80% chance, of surviving at that point.

HD: So the hope would be based on the idea that the cancer had not migrated from those lymph nodes to the other parts of the body?

BWK: Yes, and so we were quite hopeful at that point. I guess when I think back, it was a matter of a month or two, when I think he was feeling like something's funny. Also he didn't have much sensation there, so he had to go on reference pain, or pressure discomfort or whatever. But me, now, if I had any sort of bowel issue I would go immediately and try to get my colonoscopy. And I wouldn't sit there and wonder, because I know how things travel.

And I also know my feeling about cancer now is, once it is in there, you so desperately want it to not be there. When I see people walking down the street smoking, or whatever, I don't think, Oh, it's your fault. I think I want to say to them, "I would have done anything to not have a cancer cells grow in his body." And for someone to make a choice to potentially put themselves in that situation ... It is this tension between feeling immune to bad things happening to you, and knowing that they can happen to you.

[to Violet] It's okay, baby! She typically laughs when I cry, because she thinks I'm laughing! So I guess sometimes I think for myself, I'm going to get the earliest colonoscopy that I can that's covered by insurance.

HD: When would that be? The number that people throw around is 50 years old, right?

BWK: 50 years old. I would have to find out from my insurance company how young I could be. Or I would find out the cost of one and I might choose to get one ...

HD: ... and pay for it out of your own pocket?

BWK: I think part of that is my own sense of self preservation. It's funny, if I see my therapist or something, or somebody who is checking up on me, their standard question is, "Do you ever feel you might harm yourself?" And I say, are you kidding me? I have two small children!

Now let me get back to something else, too. I think there are other things you can do to prevent, that are getting more commonly known but aren't quite there yet. Vitamin D is pretty important. You can probably even ask Darold at Arbor Farms about it.

HD: His name is Darold?

BWK: Darold. Or there are other guys.

So, she might want to play with the basketball that I can get out of the car. I can keep talking while I'm doing this. This will give my inner thighs a bit of a rest.

After going through many, many supplements, vitamin D3 is the one that my husband decided to try. And there are all kinds of things people start sending you. My husband, after going through all of that said, You know what, I'm just going to take the D3, because it's the one proven kind of supplement thing. You want the basketball?

Violet: Okay!

BWK: Okay! I think vitamin D3 is very soon going to be highly recommended, but it's not quite there yet. That's one that I did see on WebMD, but my husband was always saying--he loved to garden and everything--he was often saying, I have to get outside on the weekend. I have to feel the sun, I have to. And I think he was kind of right about that with the Vitamin D.

HD: Oh yeah, I was just trying to remember there is some connection with sunshine and a vitamin D, trying to remember from elementary school health class.

BWK: Exactly. And I now take vitamin D3 daily. I found out that I was deficient and I knew that my husband was deficient. Most of us up north here are deficient, actually. And I see a physician at the U of M integrative medicine clinic who recommended it. So this is not just kind of willy-nilly out there. And it also helps with depression and a lot of other things. My husband still took fish oil. And aspirin is preventive for colorectal cancer.

HD: Really?

BWK: Yes.

HD: Now you're talking about aspirin, aspirin not ibuprofen or acetaminophen?

BWK: I saw some mention on WebMD that there is some evidence for maybe things like Aleve and stuff, but maybe not conclusive yet. But I believe vitamin D--I don't know why D3, maybe that's the form in which people take it--is what people can take. I remember Jarrett reading about carrots also. Of course they have fiber, but I think there was something else specific to that. And other than that, it's the same old exercise, eating right, and I think in general being aware of your body.

HD: Knowing when something is wrong enough ...

BWK: ... and following up with that. Following up on things and not letting things go.

HD: There's a balance, though, between knowing when there is something wrong enough to consult a physician about it, and just being a total hypochondriac.

BWK: Right.

HD: I mean, you know, Dave, what you have right now, we call that a "sore throat" and you should take TheraFlu, and stop bothering the doctor and let him deal with people who have real problems.

BWK: Exactly.

HD: So I think that's something that a lot of people have trouble with balancing. And you end up getting a lot of people who just end up toughing it out. And it turns out to be something where medicine could have made their life at lot more comfortable at least.

BWK: My husband saw an osteopathic, he got cranial psychotherapy, a healer, a naturopath. And at some point, he was just tired of having appointments. And I think having done all that, my favorite combination is to try to see the MDs who appreciate and have a large awareness of complementary medicine also. Sometimes there's the "this can definitely help" supplements or exercise or seeing the whole thing.

I felt like oncology to some extent was mostly they know a lot about chemotherapy, they know a lot about when surgery helps, which is just so important. I'm generalizing here--we had a wonderful oncologist, I just can't say enough about him--but when you try to ask about supplements or other things that can help, it's just kind of not their area, yet.

And so you have to piece together your care. So to just say, I'm going to trust them to tell me when it is really a problem, that bothers me a little bit, too, you know? And it's something that I still struggle with with my care. I know that either I put three different kinds of practitioners together for tackling some issue, and have them talk to one another, and then come up with something, or and do my own research. I just think that there are limits to the Western medicine approach.

HD: So this big thick binder, you said that you are going to hang onto that for a while? How long?

BWK: I don't know. 10 years? Until I can't stand it anymore? I'm just afraid, what if some bill pops up ...

HD: ... and they say you didn't pay this?

BWK: And they say that you didn't pay this ...

HD: ... okay, so now we are going to take your house.

BWK: Yeah. There's probably some statute of limitations on billing, which but I guess it's kind of like seven-year tax records ...

HD: ... I was going to say seven years is the number that I would throw out there, but I am not an accountant. As my account would tell you, I am definitely not an accountant.

BWK: I feel really badly--is this bothering you that you are just giving me a ride on this? [Ed. note: BWK's feet aren't touching the ground on the down cycle.]

HD: No!

BWK: Okay.

HD: I mean, are you comfortable, are you okay?

BWK: No, I'm fine. But I think also like you were saying, you can drive yourself crazy thinking that you have everything. And that is definitely true. Another thing that I got from going through this was really I had to practice--practicing it sounds so cliche to say it, but "being in the moment."

Because there were so many times when I could just sit there and think, "My husband is probably going to die and it's horrible! And it's horrible, horrible, horrible." And yet I'm sitting there with my kids, and it's not horrible just then. I mean there was kind of a good year, it was a couple of years out, and he hadn't had any recurrence. And then again, it's funny, he started to feel a little something. He hadn't told me about it, he probably didn't want to know anyway. Because in part we knew from our previous experience, we have had this said to us, that if it comes back, it's nearly always fatal.

HD: The second go-round ...

BWK: ... the second go-round is fatal. I think that it's that's why prevention is so key. Because maybe it's particularly fast-growing, I don't know what it is, but you've got to catch it early.

When it came back, it was horribly timed. I had had probably the best week of my life with my kids and my husband at home. Bless his work, Quicken Loans, because they had a paternity leave when you have a child--a two week paternity leave, I hope they still have it. And so I had this wonderful week when my son and my husband were bonding and were taking care of me and Violet and I didn't have postpartum depression like I did the first time, and everything was just fabulous.

And then my husband came to me while I was nursing and told me the cancer was back. And to me, we didn't try to dwell on odds, but I pretty much knew what that meant. And then we had the most horrible pall in our house for a good week. But you know, you can't live that way. And this is where the practice living in the moment comes in. And honestly, that's got to be preventive.

I'm still very focused on: The more relaxed I can stay the better my health is going to be. Because I also fear having stress and lack of sleep and things like that taking such a toll on my body that I could develop cancer or something. Jarrett also didn't get much sleep, he was a night owl. I think rest is surely important. He pulled a lot of all-nighters right around the time that this stuff was developing, too. Which I think could not have helped. And so I think I'm mindful of how it's just critical for me to be in the moment. Now I was not good at that before. Jarrett was always good at it, actually. It's a fat lot of good it did him, huh? [laugh]

HD: So at what point are you going to start poking around at the job market?

BWK: That's a good question. I feel like one of the silver linings, one of the mandates of my situation, my tragedy, is that I want to spend as much time with my kids as I can. So as long as I can do that. What I'm going to come up against is health insurance and being able to participate in a group. Right now I am doing COBRA at my husband's work. And I can do that for 36 months total. Which puts me in a decent position with Violet being 3 1/2 or 4.

Part of me is thinking, What if Obama gets in there! And somehow I get access to other health care! I have a couple of thoughts that I discussed with Jarrett. I said maybe I should, when I go back to work, just try to work somewhere I like doing filing or whatever, and then just get the sense of it. I've always just fantasized--I think a lot of people do--about working for public radio.

HD: They are right over there! [about two blocks away]

BWK: I know, they are right over there! I have volunteered there before. Just getting in somewhere like that, getting some benefits and then seeing whether that is truly what I want to do. I did work for the university doing information architecture. I did freelance information architecture and training for PeopleSoft software at the U.

HD: PeopleSoft? Wow. [laugh]

BWK: [laugh] Yeah, super technical. So big time technical writing. So I did that for about three or four years until Wade was born. And at that point after he was born, I decided I just couldn't. And it turned out it made a lot of sense, because my husband got sick when Wade was nine months old. And my time was taken up giving medical care. I was thinking the other day, I remember my hands bleeding a lot because I had to wash my hands so often.

HD: Oh, they were cracking from the dry skin?

BWK: Cracking from having to wash them so constantly, because I was having to do IVs and stuff.

HD: Wow, so you can do that sort of thing? You can like poke a vein?

BWK: No, I can't poke a vain. But once you have a PICC line, or a port, I can take care of it. A port is a place where they just leave it in--it's kind of like surgically in there. He got his chemo through that.

HD: I hear Violet. [Ed. note: At this point Violet was inside out of view--but with adult supervision there.]

BWK: Is she crying or is she playing?

HD: It's sort of like a sing-song sort of voice.

BWK: Yeah, she's just playing.

HD: Well listen, is there anything else you wanted to talk about on the totter before we dismount?

BWK: I know I feel like I want to give people something to really do. But I think it is the balance here--as we are balancing on the teeter totter--to not go crazy and to appreciate every minute. And I think my husband did that. He absolutely did it. I mean, I remember him saying to me, when I was telling him, "You're not going to eat any sugar!" Or, "You're going to eat macrobiotic" or whatever. And he said ...

HD: ... but I like donuts?

BWK: He said, I'm not going to be desperate. I'm not going to let this run every moment. I'll do certain things but I'm not going to let it run every moment. And he absolutely did that. And he chose that up to the very end. He chose not to take it too far. He chose not to feel desperate. And that was his gift to me, because he showed me how to do everything you can, without taking away from your life.

HD: That's a good note to end on.

BWK: Okay. Are you going to let me off? [laugh]