Kim
Cancer-Related Experience: Cancer
Type of Inherited Risk: Lynch syndrome
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Kim lives an active lifestyle and has always considered herself a healthy person. She was therefore utterly surprised when, after a routine surgical operation at 49, she was diagnosed with Stage III uterine cancer that had spread to other parts of her body. Kim’s partner and family members were there for her throughout her cancer experience, which included a hysterectomy, chemotherapy and radiation. Kim made every effort to maintain a sense of normalcy in her life during this period, continuing to work throughout treatment and taking herself to as many appointments as possible. She notes doing so required “digging deep,” and notes her ability to pull this off is because she is a “battle through it person.”
Though Kim is particularly strong-willed and takes excellent care of herself, she recognizes that her “network was awesome” – particularly support from her partner and family members. Kim speaks highly of her experiences with medical professionals, noting that her questions were always answered and she “felt like everybody really listened.” She also emphasizes that she consistently acted as her own advocate, never shying away from bringing a list of questions to her appointments, and always remembering to “write down notes every night when I came home” to prepare for her next appointments.
Three years after her cancer diagnosis, Kim underwent genetic testing and found out she has Lynch syndrome. This news surprised Kim: she had never heard of Lynch syndrome before and, to the best of her knowledge, cancer did not run in her family. However, finding out about her genetic predisposition also helped Kim better understand her cancer diagnosis. Despite knowing she has Lynch syndrome, Kim notes “I still have questions even to this day.” Kim comes from a tight knit, small family and had concerns about the impact her diagnosis would have on them, noting that she “didn’t want to burden anyone.” Aside from sharing the news about testing positive for Lynch syndrome with her mom, aunt and brother, Kim rarely brings it up, noting “anything positive I’ll tell them. Anything not I don’t.” Kim cares deeply about making sure her family is not badly affected by her diagnoses.
Kim is not a particularly big fan of getting tested, as it brings her cancer and Lynch syndrome to “the front of mind.” However, she continues to get annual colonoscopies and testing done. Despite these regular reminders, Kim has a fighter’s spirit. She and her partner both recognize the importance of regular clinical visits, and find comfort in knowing that “if something’s going to happen, we’ll find it.” Kim makes a conscious effort to continue living her life, recognizing her diagnosis is part of her, but not all of her story. An underlying theme for Kim throughout her cancer journey is that she considers herself “a very fortunate person”— fortunate to not have other health issues, fortunate to have good health insurance, fortunate to have sick days built up at work, fortunate to be surrounded by such understanding family and friends, and fortunate to have positive experiences with health care providers.
Kim has responded to Lynch syndrome by digging deep and not letting it define her.
Kim has responded to Lynch syndrome by digging deep and not letting it define her.
And I try to, you know, I hate to be like cliché and say these, you know, silly things, but it's true. Like you know, you can-- everybody has something. That's kind of how I deal with it. I think everybody has something, I have this. What if I had had a heart attack? Oh, my God, I'd get behind the wheel. If I had a heart attack, every time I got behind the wheel of a car I'd worry. And so I kind of feel like I'm just in a bucket of people that like, you know, everybody has something. I feel like I'm more with the majority, quite frankly, than I am without. And what I mean by something, I don't just mean health problems. I mean, there's people dealing with all kinds of stuff. And mentally, you know, can bring you down as well. So, I grew-- people were dealing with mental and physical things every day, and I really try not to let it get me down. That doesn't mean sometimes, you know, if I’m at a restaurant and I go to the bathroom, and you kind of get there alone, and you think, Oh, dear God. You know, you get these little fleeting thoughts. But I’ve gotten pretty good at shaking them off and not carrying them around. Because, in my mind, if I think every day, “oh, my God, I have cancer, they can't tell me I'm in remission, I have Lynch syndrome,” then I'm living with it. I may as well have it-- not really, but just kind of like I'm bringing it in. Like I really-- you can believe me or not, but I don't dwell on it as much as I would even think that I would have, if that makes sense.
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And what's strange is, like, if you dig deep, the times that I've dug deep are the times that like I pull from when it gets tough. So and don't use it-- like, I hate to say this, and I don't mean it. I did not use it as an excuse. I did not allow myself, like that to be something that I constantly was my out because of it. Don't let it define you. It's something that you have to deal with. But don't let it become all you.
Kim talks about how she learned by asking questions.
Kim talks about how she learned by asking questions.
As far as advocacy, I talked to-- I was my advocate. I went with a folder. I did write down notes every night when I came home. I asked questions. I wrote my questions down so I did not forget what questions to ask. As a matter of fact, at the end, I remember not even having to ask them if I could ask them questions. You know, they'd turn around and say go, and I'd write down. Because I was mindful of their time too-- I asked questions but was mindful that these folks had a lot to do. So I would just go down, and even if they answered something that I wasn't sure of or had wanted to have a conversation about, I would get my answer, go home, and then write it down and come back. I was always very mindful of their time, but also needed answers as well.
Kim works with a general breast cancer advocacy group called “Woman to Woman.”
Kim works with a general breast cancer advocacy group called “Woman to Woman.”
So, my way of contributing is like this. And then I'll support someone through a program called Woman to Woman if they ask for support. I'm one of the people who will support. That's how I give back. I do feel a sense of something to give back. I mean, the people were, like I said, beyond what I ever thought that they would be. So those are the two ways I give back more, trying to help, it's definitely-- I would not advise anyone to get online and just do searches and believe what you see and hear. I mean, of course, there's people on there that are telling the truth, but this seemed like a fantastic idea really to be able to get people's stories. That's what the Woman to Woman program is as well. You go have tea, have coffee, with someone who has been there, and they're talking to someone who's going through it. And it's helpful. It's very helpful to know that you've come out and you're going to live your life and so forth.
Kim emphasizes the importance of providing information based on listening and responding to patients’ questions.
Kim emphasizes the importance of providing information based on listening and responding to patients’ questions.
But answer people's questions if they have-- take a minute to answer your patients' questions if they have questions. I went with paper after paper. And I understand probably now with the web and everything people might think they know more than they know. I can't imagine how frustrating it must be. But answer their questions. They're only trying to find out because they don't know what to do. They're looking for help.