Thomas
Cancer-Related Experience: Cancer
Type of Inherited Risk: A polyposis syndrome
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Thomas discovered his polyposis syndrome unexpectedly when he was age 41. He had been doing well, working his “dream job” as a bus driver and feeling healthy, when sudden and severe stomach pain caused him to go to the emergency department at a nearby hospital. He was admitted, visited at his bedside by multiple doctors trying to understand what was going on, and then told he had “a rare form of colon cancer.” His doctors went on to tell Thomas “everything about you is rare,” because he was so young, had not had any earlier symptoms, yet had 51 colon polyps, some of which were already stage two or three cancerous. Getting a diagnosis both of a polyposis syndrome and of cancer while so sick he needed to be in the hospital – though he had seemed perfectly well until very recently – felt to Thomas like his “world crashing.”
Because he didn’t have medical insurance, Thomas was transferred from the hospital at which he was diagnosed to another facility to have his colon removed. The surgery did not go well, and more operations were necessary. He had started out a healthy man of almost 200 pounds, but after the surgery “it was just one complication from the next.” By the time he went back home, he was “so thin,” too weak to go back to work, and had a hospital-acquired infection that made it difficult for him to fight off germs. Thomas also had to completely change the way he eats because his old diet didn’t work once his colon was removed. He has to have small portions of food, and stick with things that are easier to digest.
Thomas continues to have regular scopes to see if there are additional polyps in his stomach or rectum, and to have those polyps removed whenever they are identified. He says what makes him rare is that he develops “polyps that turns to cancer,” and that “this is for the rest of my life” because the polyps are caused by the hereditary polyposis syndrome “that was passed down to me.” He feels different from other people in his family who have had cancer, however, because he “didn’t get no warnings” in the form of symptoms before he became very ill. Thomas has tried to tell his family members – both close, and more distant – to get tested so they can catch it earlier than he did. But he has found that most family members don’t really listen or follow up with doctors. He understands that “nobody want to hear” that they have cancer or elevated cancer risk, but is frustrated that more people don’t listen to him because he himself learned from experience that “not knowing is more damaging than you think it is.”
Serious illness led Thomas to reckon with himself and think a lot about his life. Being a father is one of the main triumphs of his life. His experience with a polyposis syndrome has also led him to “be honest with everyone,” to not let “pride get in the way,” and to “step outside the lines” by living free and not “letting circumstances of media life, mainstream life, get in the way of your life.” Thomas told his story for this project “not so much to be seen,” but because he hopes he can do “something for someone that helped them move a little further along through life.”
Thomas spoke up in the hospital when he felt that doctors were not telling him what was going on.
Thomas spoke up in the hospital when he felt that doctors were not telling him what was going on.
Four doctors came and talked to me. And they pretty much came in, you know, said they name. I told them I'm [NAME], shook my hand, and they walked out. Four teams of doctor. The fourth doctor that came in was the head of the three of the doctors that came in. I guess he, he ran the whole hospital. OK. So he came into talk to me, shook my hand, and said, “I'll be right back.” I never let his hand go. I held his hand and I said to him, I said, “Doctor, you're the fourth team that came in here to talk to me. Shook my hand, looked at me, and you walk away.” I said, I know you have more important patients in here than me. He turned around and looked at me, and he put his other hand on top of my hand, and he said, “[NAME].” I said, “Yes, Doc?” He said, “How old are you?” I said, “I'm 41.” He said, “OK, the reason we had the four doctors come in here is because your chart and what we see in you right now does not add up.” Your age, who you are, and then you look younger than what you're telling me. So here's the situation.” He said, “You're 41. You have 51 polyps in your colon. One of them is already stage three cancerous.” I think stage two or stage three, going into stage three. And he said, “And you're only 41. This type of situation I've only seen from 68 to 90-year-olds. So you are my important patient.” And he walked away. I stood there. I couldn't think, I couldn't, it was like everything was just moving in slow motion. It was like, when he walked away, it was like the whole world panned away from me, and I was just left there with this information. And I couldn't think, I couldn't move. I was just blank. And the person that was with me, she couldn't say anything either. You know, so I was just left there in this world on my own for this moment, trying to figure out what happened. How? Why? So while I was in that mode, he comes back into there and they start asking me about my health. And while he was asking me that, I'm just looking at my world crashing. That's all I thought, was everything that I worked so hard to get to at this moment, driving the Coach bus, doing what I love to do is about to be ripped away from me. Somehow I got to get ahead of this.
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So not only that I'm going to the cancer center place to get CAT scanned, to get blood drawn, to get scanned again to see if everything is OK, I also have to go and get scoped so they can remove the polyps. This is what makes mine rare. I develop the polyps that turns to cancer. This is not something that, “Oh, it's only going to happen once in a while.” This is for the rest of my life. That's the hereditary.
Thomas discusses how his access to care has waxed and waned as he has gained and lost insurance.
Thomas discusses how his access to care has waxed and waned as he has gained and lost insurance.
“Everything about you is rare.” He said, “We sent your specimen in for testing.” And he said, “You have the rare form of colon cancer.” He was upset because he couldn't treat me at the time because I didn't have any insurance. And to rewind back, I was sitting in my house at 40 years old, and I was looking, I was sitting there thinking, I've got to find a way to get some insurance. And that colon commercial came on. It literally came on, and I'm sitting here and I'm looking at this colon commercial, and I'm sitting here and I'm like, “OK, God, I said, I'm going to get, I’m going to go get checked out. As soon as I get some medical insurance, I'm going to get checked out. And that's when all, when I turned 41, all of this happened. So they sent me to another hospital. But he made sure that I had a team that he trained that was at this sister hospital that was with them. So went there and I talked to them. And, oh, they set me up to go to a place called [LOCATION] for genetics testing.
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Were you afraid to get checked out when you, when you knew? Because it sounds like your, you had the cancer in your family.
You know what it was? It was like not scared, it's not having the insurance.
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Before I came here, I did one, yeah, in 2017 before I got kicked out. They pulled out six. But the one that they pulled out six, I didn't see doctors for a whole year. Because she switched my medical insurance from JPS medical insurance to Humana, and JPS don't deal with Humana insurance. So I lost the whole cancer team for a year. So when I did get another set of team, they pulled out six polyps within a year.
Thomas says he couldn’t hear what the doctors were saying at first because his world was crashing.
Thomas says he couldn’t hear what the doctors were saying at first because his world was crashing.
I was just left there in this world on my own for this moment, trying to figure out what happened. How? Why? So while I was in that mode, he comes back into there and they start asking me about my health. And while he was asking me that, I'm just looking at my world crashing. That's all I thought, was everything that I worked so hard to get to at this moment, driving the Coach bus, doing what I love to do is about to be ripped away from me. Somehow I got to get ahead of this. So whatever he was telling me at that moment, I didn't hear anything he had to say, except for everything about you is rare. And that's when I popped back into focus, and I was like, I said, “Sorry, what did you say?” He said, “[NAME],” he said, “Everything about you is rare.” He said, “We sent your specimen in for testing.” And he said, “You have the rare form of colon cancer.”
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Because it was like I had, I had, what did he say? He said I had 51 polyps. One of them was stage three, stage two going to stage three cancer. 51 polyps, all of them was in my colon. It was only one that was in my rectum. But I don't know which one was the stage two, because they never told me. Because most people ask questions, I want to see. Let me see the charts. Let me see. I was still in the blank phase just listening to this man telling me pretty much you going to die soon. You going to die one day. That's what it was coming to me, because my mother passed away. So what I developed, I developed that mind frame. You know, so when I have a conversation, if I have a conversation with you and we talking, it's like, it's just over my head. And then it’s like, “Well, [NAME], what are you going to do with your life?” I don’t know. I got a bucket list I want to do because now my life is on a timestamp.
Thomas says nobody in his family listens to what he is trying to tell them.
Thomas says nobody in his family listens to what he is trying to tell them.
My biggest pet peeve is nobody don't listen to me. You know? But they don't listen to what I'm trying to tell them. I'm not telling you anything that I didn't experience. I can't talk about something I didn't experience. And talking about something that somebody else experienced, I will never get it right because I’m not using their words.
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And you know how most families is not keen on talking about family problems. You'd rather sweep it under the rug or just don't deal with it, you know? And being a baby from both sides, you don't have no say. So you don't have a voice yet. You don’t have an idea. We’ll tell you when you have an idea. That’s how that goes.
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I'm only telling you what they was telling me. So they was looking up my information. I said, but the way you all are looking at me, you're looking at me like I'm lying about getting cancer. So when I lift up my shirt and I show them my scars, and I was really angry because I don't like showing that. This covered up makes me feel normal.
Thomas despaired when his surgeries made it impossible for him to continue his dream job.
Thomas despaired when his surgeries made it impossible for him to continue his dream job.
It was horrible to go from thinking that, you know, I was positive, I'm going back to work. Yeah, I’m [uh], I ain't worried about it. Call the job. She had to call the job and tell them that I took a turn for the worse. So they just, they just wrote it as if I couldn't pass the physical. And when she told me, I broke down and cried. You would've thought I broke down and cried about the cancer, you know, about everything.
Thomas explains how doctors can get to know their patients.
Thomas explains how doctors can get to know their patients.
Don't start off by saying, “Oh, what are you in for?” Try saying, “Hi. What's your name? I don't want to know about your illness. I've got your chart. Tell me about yourself. How did you feel today?” If we could do that, that would make us more comfortable. Like man, this doctor really wants to know how I'm feeling and don't want to just know about my ailments. That's my message to doctors.
Thomas is frustrated with the pace of research.
Thomas is frustrated with the pace of research.
We done surpassed telecommunications, we done surpassed space travel, we done surpassed all of this stuff, computer technology. You got cars that can drive themselves, brake by themselves, even park themselves. And you mean to tell me we're still dying from cancer because you all only put in 2% of what you're getting into the research? That's what makes me mad. And the politicians think that cancer patients are dumb because we didn't go to college. Man, I'm going to tell you something. When you get cancer, that's the motivation to make you do research.We done surpassed telecommunications, we done surpassed space travel, we done surpassed all of this stuff, computer technology. You got cars that can drive themselves, brake by themselves, even park themselves. And you mean to tell me we're still dying from cancer because you all only put in 2% of what you're getting into the research? That's what makes me mad. And the politicians think that cancer patients are dumb because we didn't go to college. Man, I'm going to tell you something. When you get cancer, that's the motivation to make you do research.
Thomas describes how cancer risk has a different impact on him than other life-threatening risks.
Thomas describes how cancer risk has a different impact on him than other life-threatening risks.
It will humble you.
Big time, huh?
It will humble you big time. Because if it, if cancer don't humble you, ooh, I don't know what it's going to take for a person to get humble. Because we usually say, oh, when your life is threatened, you're humbled. Nah, because see, when people get shot and they survive, they usually think, yeah, I got lucky, or I was blessed, or somebody was looking out for me. You know, you're not really OK. You're not really, you’re not, you're shocked. You're shocked to the fact that you survive a gunshot, you understand? You're shocked to the fact that you survived a horrific car accident or, or a plane crash. You know what I'm saying? You know, but some of those people in the plane crash don't even survive. But compare that to cancer. You have no win. You see what I'm saying? Even people going down in the plane have a better chance of me surviving, and that's crazy. And that's what nobody looks at. People who get in the car accident, you know, or people who've just fallen off the roof, you have a better chance of surviving life luckier than me, because I have a stamp on my life now. You get shot and survive, and that's not a stamp. You survive.
Thomas understands the importance of a peer support group and wishes he had one.
Thomas understands the importance of a peer support group and wishes he had one.
You know, so it’s, dealing with this, honestly, is all about support. I can't stress that enough. It's all about support. Find you support. Find your support group. I wish I had one. I wish I had one. But if you out there and you're dealing with this disease, find a support group. Don't be afraid to talk. Go to it. If you're afraid to talk, just don't be afraid to listen. Somebody out there has the same thing you're going through. Somebody out there is going to know exactly what you're going through. Unfortunately, for me, I have no one, OK? But it doesn't mean I can't be that for someone.