Talking with Family

So when I was diagnosed in 2016, it was a huge shock to my family. They were scared. They were unaware of the new technology.
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Yeah. Were those conversations hard for you to initiate?
 It was difficult, because I didn't want them to think that just because I got cancer, you're going to get cancer now.
Right.
You know? And that was the biggest thing. So it was-- I had to strike a balance on how to have that conversation. You know, one of it was-- the woman at the local hospital, I’ll, you know, I had told them her name. And I said, you know, in fact, she said that you don't even have to go through the hospital. They have a laboratory that is so much cheaper. So I use the it's not expensive tactic.
Right.
 Because everybody thinks oh, if I have to get this genetic testing and my insurance doesn't cover it because most times insurance don't cover these things. So I went at it from this is a laboratory that you can get the testing back in six to eight weeks. And it's affordable, so you should do it.

So cancer, the C word, is not one that we like to bring up in the house very much. We really don't talk about it much.
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And my mom worries about everything, so I know she just, you know, is beside herself when she found out I tested positive. But she also was one of the first ones that mentioned to me, you know, “You know.” You're one step ahead of the rest of us. You know, you're aware of this. This is huge. And I was like, “You're right.” After that, I really just try not to stress about it, but we don't-- it doesn't ever really come up in family, family functions and stuff like that. Unfortunately, I don't get to see the side of my family that it has, you know, directly affected. Like my aunts as much, they don't live around here and my cousins. But it is, it really doesn't come up that often. It's just something you don't really want to have to talk about, but, yeah. They've been very supportive.

And she told me, we love you a lot. Give this treatment your all. Smile. Give thanks. Be very positive because you will come out ahead. And yes, I went ahead in Mexico with situations, with a medical system with fewer resources, less technology or maybe the technology was similar because the hospital was a center of high classification. But the resources aren’t the same. The number of people that needs it is incredible.
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She took a bus. It took three hours by bus to take her to a hospital and bring her back after a chemotherapy to the village three hours to return on the bus. And it was, well, a very different situation than mine. I really couldn’t complain. Rather, I admire her more than complaining. I can’t, I can’t do that.

Y me dijo a mí, te queremos mucho. Échale muchas ganas al tratamiento. Sonríe. Da las gracias. Sea muy positiva porque vas a salir adelante. Y si yo salí en México con situaciones con un sistema médico con menos recursos, menos tecnología o tal vez la tecnología sea tal vez similar porque era un centro de clasificación alta el hospital. Pero los recursos no son los mismos. La cantidad de gente que necesita es increíble.  
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Ella tomaba un camión. Duraba tres horas el camión para llevar a un hospital y regresarse después de una quimioterapia al pueblo tres horas de regreso en camión. Y era, bueno, una situación muy diferente a la que yo - realmente no me puedo quejar. Más bien la admiro a ella más que quejarme. No puedo, no puedo hacerlo.  

Yeah. Just more that it was my mom was sure it wasn’t genetic, but she said, you know, you should do it anyway. Because I think she was a little bit concerned. ‘Cause when I got it young-- and then people-- and then when doctors asked, “oh, is there a family history?” I said, well, my mom had it. And so, I think she was uncomfortable with kind of being blamed for it in a way, that she gave it to me. But I mean didn’t see it that way. Nobody wants to give this to anybody else. But yeah, I think she was always uncomfortable-- I think she was uncomfortable with that. And she thought it would be a good idea just to kind of prove that it didn’t come from her.
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When I was diagnosed, and going through treatment, and all that, my father was starting to die. And so that survey for the genetic testing, it was asking some questions about his side of the family. And so basically while he was in hospice on his deathbed, I had to ask him questions about his side of the family. He got really upset. He didn’t want to talk about it. But he gave me the information. And then, because I was trying to ask my mom, I didn’t think it was a good time to ask my father that information. And she said, no, you should ask him. But he wasn’t well. I went and asked him anyway. And then he wasn’t really happy about it. And then I was sort of angry at-- I was a little upset at him. I mean I understood like he just wasn’t feeling well. But also, like he was not too tired to tell my mom and I to do other things. And I thought, you know, if I was dying, I would want to help my kid—my child—in whatever way it’s possible. Even if it’s painful, if this is something that can help me in my treatment, like I would want to do that even if I was dying. So, I was a little upset about that.

Well the actual beginning of the story is my mother being diagnosed and telling all of us kids that it’s a familial issue and that we should all get checked out...I did not. But to my credit, I was late teens and I was not interested in listening to anything that my mother had to say. And, you know, I was in my teens, so I was invulnerable. I did not have to get checked out for anything. I felt fine. And so flash forward many years later, and I was doing a pre-employment physical for this job I had gotten. It was pretty good job, and I was excited about it. And they did some blood work and told me that I was severely anemic. And so I needed to address that before they could clear me to come to work. So I went to see a doctor about it. And he took a family history, and was horrified that I was, you know, in my early 30s and had not been checked out. Because, apparently, I learned much later on that if you don't get diagnosed and get treated with familial polyposis, that people tend to be dead of colon cancer by 45.
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This-- I think this took place during a time when, when things were a little tumultuous. I do remember being at the hospital when my mother came out of surgery. And that was very difficult for me, because, you know, for all the issues that we had, my mother was always a very strong person.
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So they weren’t a lot of help. So my mother did everything herself. So it was very difficult to see her in that that kind of position of helplessness. So I remember, that was kind of tough.

So I said “Dad, you have to tell me. You have to tell me, you know, what did your mom have? What did your dad have? Were there, you know, did you even have, is there any diabetes in your family? Is there anything in your family that I should know about?” Because I have this little boy, you know, who needs me. And for him, I need to know. I feel like knowing that you have a history of diseases in your family, it might not prevent it because it's genetic, but you can definitely make healthy lifestyle choices.
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I can talk until I'm blue in the face to tell my dad to get genetic testing, and he is not going to do it.
You know, he comes from an area where, you know, horrible things happened. And so I think that's where we're at. But I think it takes us, the younger generation, to try and advocate and be advocates. To say, you know, there are a few doctors that you can trust. You know, there are a few. But the best thing you can do is be your own-- know your body. Talk to each other. You don't have to go to the genetic testing person, but we can talk to each other. You can know how your great grandmother died by asking your grandmother. You can know how your aunt died by asking people. Talk to each other. I'm very fortunate in my family that my cousin put together a family tree that goes back generations. But we never talked about health. We just talked about where we came from and how that worked. So if I look at that family tree and I try to go back to see how these people died, that’s a huge task on me. But that's something that I owe my son. You know, so I'll add that to my list of many thousand things that I need to do.

My dad said that he actually thinks he would have thought twice about having kids if he had known that he had this 50% chance of handing down the gene. And I just laughed at him when he said that. I said, “oh, for heaven's sakes, Dad. You know you wouldn't give us up for anything.” I said, “don't be so dramatic.”

But yeah, he really felt horrible about it, still feels horrible about it, will probably continue to feel horrible about it for a while.

Only times my family has talked about the disease itself is if I'm getting ready to have a test or something like that, and I've asked for prayer about it. But as a rule, it's never brought up as a subject to talk about unless I was talking with the person who actually had the disease. And we'll compare notes or something like that. But most of them have all, as I said, they've all died. But when they were living, we didn't talk a lot about the disease. We compared notes on occasion. But no, we were pretty much distant in terms of talking about the disease. We chose not to.

I mean my mother, and her-- they didn't talk about these things. They just-- it was just like something that they had to bear. My mother gave a little more information. My grandmother, if you mention the people that had passed, crying. And then my mother would start to cry. So you learned at a very early age, don't talk about this. Don't talk about your aunt and uncle that you knew who died, at very young ages, not from cancer. But don't talk about it, because it just upsets everybody. And so you don't ask questions. You know, we always knew that grandpa-- my mother's father, had colon cancer. He is the genetic link, and that was, you know, because that's what he died of. And he was very young. He was 51.

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.

What went into the decision that your parents made to get themselves tested?
That's a good question. I guess so we could inform our family members on one side or the other-- you know personally, throughout the experience, and even if I'd had a more prevalent history of breast cancer, you know I guess I'm the type of person who would always want like more information rather than less. So just assumed that everyone else on either side of the family would also want to be armed with that info. Turns out maybe they weren't. But we would-- that was like probably the main impetus behind it, is that we'd want my female cousins and aunts on either side to know, also.

The information that comes from genetic counselling regardless of the test results can be very important for family members and can be literally life-saving in some cases. At the same time that isn’t to say that it’s always easy or straightforward and that everyone is going to have an easy time with it or the same reaction. So, as people will see in the videos that each family’s different, each person’s different, they’re going to have different challenges, different approaches, different reaction to the information. It can be difficult and it can be scary to have to be the giver or receiver, and people can have a really wide range of emotions. So, I think it’s using the tools that are available that often times as genetic professionals we’re here and happy to be kind of the source of information and support to help people strategize; to help people ask questions. So, you know, sit down and often talk to people on the phone or in person about “how do I tell, who do I have to tell and how do I tell them what?”, you know, how do we give them that information. So, I think, you know, our job in seeing a lot of patients is also kind of know what strategies might help and help people kind of talk through that in their family. Maybe there are certain people that they will have an easier time telling and they can utilize those people to then help disseminate the information through their family that, you know, they tell key people and have those people tell other key people that they kind of find strategies that work, if they’re closer to certain people and not others, that we have tools like family letters, information sheets oftentimes it can help in those situations.