Mea

Age at interview: 39
Outline:

Mea, age 39, was diagnosed with a rare inherited disorder called Familial Adenomatous Polyposis (FAP). She was 24 at the time and a new mother. She had a colectomy and bowel reconstruction, and several endoscopies and sigmoidoscopies. She has not had cancer, but with complications of FAP has had several long stays in the hospital. She has outlived her prognosis. Her husband, three children and strong faith keep her going.

Background:

Mea is an African/Native American woman, who lives with her husband and three school-aged children in a small city in the Midwest.

Cancer-Related Experience: Elevated risk

Type of Inherited Risk: A polyposis syndrome

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Mea at the age of 24 tested positive for Familial Adenomatous Polyposis (FAP), a very rare inherited disorder associated with polyps in the colon and elsewhere. She had just given birth to her first child and after unexplained bleeding and many tests, she was referred for genetic testing. When given her results, she learned that with FAP “a lot people don't live past 35.” Hearing that “was like a punch in the stomach,” especially because no one in her family has FAP or its symptoms. It took quite a while to get over the, “why me?” feeling and accept her rare and serious condition.

When her first born was just a year old, 250 polyps were found in Mea’s colon. She had a colectomy and reconstructive surgery and was in the hospital for 21 days; it took months to recover. Over many years since then, she’s given birth to two more children, and has had numerous, long hospital stays —including over an Easter holiday. She’s been hospitalized for bowel obstructions, blood transfusions, excessive bleeding and exploratory surgeries. Frequent hospitalization, she knows, “comes with the package.” She jokes that the hospital is like a second home that she does not want. But seriously, it’s very hard. Her husband misses a lot of work to bring their three kids to visit her in the hospital. Her kids have to see tubes coming out of her. They want to hug her, but they can’t. They want her to come home and do things with them that she can't do. She tries to explain that she has to be in the hospital in order to be there for them. The older they get, the better understand it, but as Mea says, “they don't like it” and “they cry.”

Polyps also have been found in her neck and they are watching her esophagus and pancreas. All of this causes low blood levels, weakness, fatigue, digestive problems, limitations on what she can eat, and frequent trips to the bathroom. While none of her adult relatives has FAP, Mea worries about her children’s risk for this rare and challenging genetic mutation.

At age 39, Mea has outlived her prognosis and is fighting to stay alive to raise her three children, ranging from age 9 to 14. Through her many long hospitalizations, Mea has developed relationships with specialists at both her local hospital and at the academic comprehensive cancer center. With few studies for this rare condition, Mea and her health care teams are “all learning together” about what FAP means and how to manage it. These partnerships make her feel better. Her loving and supportive husband and kids and her strong faith keep her going.

 

Mea was frustrated by the extensive testing required to identify her syndrome.

Mea was frustrated by the extensive testing required to identify her syndrome.

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OK, it was like they kept testing me for regular things, like simple things that everybody else gets, and they it kept coming back, you know, ‘nothing's wrong, nothing's wrong’. So at one point, the doctor said, “we're just going to send you to [LOCATION], and this is in [LOCATION], and they can do more testings and, offer more things to you.” And so, you know, I went back and forth, and they did testings and colonoscopies when they take biopsies and pieces out. And I did that for a few months. And then, one time I went up there, and they were like, “we're just going to test you for rare genetic things.” And then, I would say about two or three days later, they called me, and they were like, “you tested positive for FAP.” But it was a lot of testing going on, a lot of, you know, biopsies, colonoscopies, blood work. It was frustrating to me, because I wanted to know what was wrong. And, they didn't want to do the surgery, until they figured out what was wrong. They didn't want to go in there and start messing around with things. And so [LOCATION] ended up finding out exactly what it was after extensive blood work, and testing, and all that good stuff.”

 

One way Mea manages her polyposis syndrome is by trying various things, including what doctors think could help, and then telling her providers what works and what doesn’t.

One way Mea manages her polyposis syndrome is by trying various things, including what doctors think could help, and then telling her providers what works and what doesn’t.

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They treat me pretty good. They're pretty good. They're pretty patient. You know. They see how hard it is on me. And they try to do their best in what they do know. So that's a good thing. I mean, I'm sitting here. Sometimes it seems like we're all learning together.
Mhm. What's that like? What do you mean by learning together?
Because it's kind of rare, doctors may have little studies in it, but I don't think they have a lot of patients that come to them with FAP. So they're like, we'll try this, or we'll do this, or we don't know why your magnesium levels are low. And you’ve got other doctors that know why, and then so it's like we're kind of just like guiding ourselves through it. You know, it kind of makes me feel better. And they kind of give the medicine and treatment on how they think they should. So…
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They're patient, you know, or they'll try things, and I'll say, well I don't want to. I've tried it. It's not working, or it's doing this to me. Sometimes I try to do what works for me, and then I'll tell them. And then they'll go, OK, well good. If that's working for you, then you keep on doing that if that's good for you. You know what I mean? So, yeah. It's a mess.

 

Mea points to an external motivation to keep up with screening.

Mea points to an external motivation to keep up with screening.

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I do it for my kids. I do it for them. You know, with them being tested, I want to be there for them even if they have it, so they don't have to go through so many things that I went through, because had I known younger, I wouldn't have had such big surgeries that I had. But I have to be able to guide them through life, you know, and it teaches them to be strong. You know so, but I do it for my kids. I mean, I love my family too, but my kids are my everything. So I do it for them.

 

While in hospital because of her polyposis syndrome, Mea found that family visits kept her going.

While in hospital because of her polyposis syndrome, Mea found that family visits kept her going.

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But when I do have those big surgeries, we all try to pull together as a team. You know, and with the hospital, we try to rotate, because they like to for me to always have somebody up there with me. At least they try. They try. So because-- It's really hard being away from home for almost a month.
Yeah, I would say.
It’s really hard. You know, you don't get to go outside or anything. You're confined to your room, you know, with your IVs and just TV. And you don't want to move around, because you're still in pain.
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By coming to see me, you know, bringing me things, calling me, bringing the kids up-- that keeps me going. And, you know, trying not to let me be in the hospital by myself, you know, so I don't dwell on things. They try to keep my mind busy. It helps. It really does.
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But when people come, that makes me feel better. You know, lets me know I'm still loved.

 

Mea worries about her husband getting exhausted by her need for support.

Mea worries about her husband getting exhausted by her need for support.

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He's very supportive, but sometimes I feel like he gets tired. You know, when I ask him, he'll go, “No, no,” but I would say it would have to be hard on him, because he's working, and I'm constantly going back and forth to the hospital, so he's like here and there, and he's trying to help with the kids. And he loves me. You know what I'm saying? But I know it's difficult on him. You know, I bet you when we got married, he's like, “whoa, I didn't sign up for all this,” but he does good. He does good. Because, I mean, at times, I would have thought he would have left me, you know, so much I’m dealing with, so much I'm dumping on him. Still, he helps as much as he can.
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Sometimes that doesn't work out for people. Sometimes people get married, and they're like, “Shit, I'm not doing all that,” but nope. He's still standing strong with me. And he tries to help as much as he can and be as sympathetic as he can.

 

Mea wishes she had a professional counselor who would understand her experiences.

Mea wishes she had a professional counselor who would understand her experiences.

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No. No. I mean, I believe I need like counseling or, you know, somebody to talk to, but I don't. The only people I talk to is my family, and they listen, but I don't think they actually get it-- my extent of what I go through.  You know, it's the old saying, you don't know what somebody's going through if you're not walking in their shoes. So, it would be nice to talk to somebody if they will offer counseling, because I just-- sometimes I feel like I'm alone, you know, because I have not yet bumped into anybody that has the same disease I do. I don't know anybody. I haven't met anybody, nowhere. And it's a lot of places where I go and they're like, “What's that?” So it would be comforting to be able to talk to other people that are in my shoes.  

 

Mea explains the importance to self-advocacy with being aware of and comfortable with one’s body.

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Mea explains the importance to self-advocacy with being aware of and comfortable with one’s body.

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I am really in tune with my body. So it's kind of like, I know what my body needs. I have to listen to my body and be in tune with my body. Because I don't want anything to go wrong. You know, I'm not ashamed of talking about it, or that I make a lot of bowel movements, or, that I have to have surgery there...I mean, I think it should be addressed. You know? You have to talk about it. You can't just have body parts and be embarrassed about them, or let's not talk about them, or they're not important. You know, everything you have in your body is important. So it should be addressed.

 

Mea wants more people to be aware of FAP.

Mea wants more people to be aware of FAP.

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Because I want the world to know that FAP is real, and it's out here. And we need help. And we need to find cures. And I wanted to talk about my story, and to maybe help somebody else, or, you know, create a foundation, or, like you said, a website, or more opportunities. I want the doctors to be more aware. They're doing the best they can, but there are people out here with rare diseases that need help as well.

 

Mea worries about her polyps getting too big between procedures.

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Mea worries about her polyps getting too big between procedures.

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You know, I try not to miss any appointments, any procedures. Like, you know, when I was pregnant with my son, I had to miss my procedure. It really freaked me out, because I'm like, “I don't want them to get too big.” You know, so, I try to stay on top of them before they turn into anything.

 

Mea’s choices about family size and pregnancies were complicated by her surgical procedures.

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Mea’s choices about family size and pregnancies were complicated by her surgical procedures.

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My OBG was like, you know, “you really should think about, you know, not having any more kids.” You know, because when I get pregnant, it's harder on me than the average person. And then things happen. Like when I had high blood pressure, she was thinking after I delivered it would go down, but it never did. It never did. So I've been having high blood pressure for 11 years. And then, when I got pregnant with my last son, we had to induce with him, because it was so much room, she didn't want him to be so big and, you know, wrap himself around, or, you know, mess with my scar tissue, and stuff like that. So, yeah, it was kind of hard.

 

Mea worries that clinicians miss or delay diagnoses because they are not aware enough of polyposis syndromes.

Mea worries that clinicians miss or delay diagnoses because they are not aware enough of polyposis syndromes.

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I want the doctors to be more aware. You know. They're—they’re doing the best they can, but there are people out here with rare diseases that need help.
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And so, you know, I went back and forth, and they did testings and like colonoscopies when they take biopsies and pieces out. And I did that for a few months. And then, one time I went up there, and they were like, “we're just going to test you for like rare genetic things.” And then, I would say about two or three days later, they called me, and they were like, “you tested positive for FAP.”