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Interview With Fight CRC Advocate and Volunteer Kristina Smith

kristina-smith

Interview With Fight CRC Advocate and Volunteer Kristina Smith

 Lee:                 Hi Kristina, welcome to the show. How are you doing?

Kristina:          Doing great. Thank you so much for having me.

Lee:                 Oh, it’s my pleasure. So, I didn’t get a chance to tell you how I found out about your story. I subscribe– Google offers a free service where you can put in different words and phrases and say, “Email me anytime a story pops up.” So, being the Colon Cancer Podcast, I have a thing out there, I said, “Every day, send me anything that’s found online to do with colon cancer,” and I see this TV news story about you and your story, so that’s how I found you. And then you were kind enough to come on the show and tell me about your story. So, take us back – I know you’ve had quite the journey, to say the least, but take us back– I guess it’s been a little over three years now, and how you got thrust into the world of colon cancer.

Kristina:          Alright, well over three years ago, I was getting ready to celebrate my year wedding anniversary with my husband and our three-year dating anniversary, when we were seven months pregnant, and kind of out of nowhere, some good friends had just said, “Hey, your color looks really bad.” They just saw us one night when we were all kind of getting together and – “No, really, your color looks really bad. You need to go get checked.” At the time, Joe was self-employed and we didn’t have health insurance, so we were pretty hesitant about it, but we ended up going just to have a regular, routine doctor’s appointment. Doctor asked us routine questions and then took some blood for labs and said, “I’ll call you tomorrow with those results.” And within fifteen minutes he had called my cell phone and said, “You’ve got to get your husband to the hospital immediately.” His hemoglobin levels were at 4.7 and he had explained that critical or near-death was actually at a 6, so he was below that level. He said, “I wouldn’t have even believed that you could be walking right now, had I not seen it with my own two eyes.” So, immediately, we drove a little over an hour back to the hospital, they direct admitted us, and after a couple days of blood transfusions, we had a colonoscopy done and immediately they found a tumor on Joe’s colon. The short go of it is we had a total colectomy the very next day. He did not end up having to wear a bag or anything like that, but there were many complications, not just from the initial surgery, where his wound was draining. Then we went home and something still wasn’t right, and what happened was the inner part of his wound was not healing correctly. The outer part, his skin, was fusing back together, but the inner layer of that skin wasn’t, so we had to go back in for another surgery and have that cleaned up and removed. All the while, we’re seven months pregnant, I’m very gravely ill throughout my entire pregnancy on top of this, but that’s kind of the spark of what threw us into cancer. Within less than two months, so right before we had our son, we found out that the cancer had already spread. They initially classified it as stage three, but it had already spread to his liver, and so at that point, the doctor explained anything that we did treatment-wise would simply be to prolong life. So, we were sitting, literally, at the eve of having our firstborn son and finding out that we would only be prolonging life for my husband.

Lee:                 And so how long after this diagnosis was Porter born?

Kristina:          He was born two months and one day after the very initial hospital stay when we went into that to have the blood transfusions and everything. We certainly thought that there couldn’t have been a worse time for any of this to come about, especially having a baby and expecting him. What we were very surprisingly and very happy shocked about was that we were very wrong, because he was the perfect timing of all of this and was certainly medicine that no doctor could’ve ever prescribed to any of us to get through some very, very dark and gloomy days.

Lee:                 I had a recent conversation with a colon cancer survivor – she’s actually been on my show twice, her name is Dawn Eicher – and she shared a quote, I won’t go into the whole thing. but one of the key points of this quote is that the right people show up at the right time, and it sounds like your son showed up at the right time.

Kristina:          He certainly did. Kind of to go further on that quote, the people you expect to be there aren’t always the ones that do show up.

Lee:                 That’s a whole different story, yes.

Kristina:          It is, it’s a whole different story, but she is certainly right. The exact right people that you need certainly just happen to be where they are supposed to be at the right time.

Lee:                 It’s interesting to hear you say that, because as a survivor myself and virtually every survivor that I speak to, someone once put it really well – Michael Holtz who I first talked to over a year ago, he said, “The portrait of the people in your life before cancer and the portrait of those people after isn’t going to be the same.”

Kristina:          Yes, very true statement.

Lee:                 And you found that to be true, interesting. So, one more vote that that is true. So, it was about a year later that Joe passed?

Kristina:          It was. We went through many, many different types of chemotherapy. The original had worked probably the first couple of months and we just went back and forth, back and forth with things that were working and that weren’t, but after about– he was probably about nine months – nine, ten months after his original diagnosis we went for a second opinion up in the St. Louis area and they gave us three options. We went with an experimental drug and then we were randomly selected for that chemotherapy that was an experimental drug, so it was exactly sixteen months after his original diagnosis and fourteen months after our son was born that Joe passed away. It’ll be two years in October.

Lee:                 And I hear Porter in the background. It’s okay, he’s not the first little one we’ve had in the background on the show. I was so fortunate, a year ago I interviewed a young lady named Betsy Henson and she was personally diagnosed while she was pregnant and was treated while she was pregnant and gave birth to a perfect, gorgeous little baby, and when I interviewed her I could just hear her hiccupping and cooing in the background, so it’s perfectly okay that–

Kristina:          They’re part of those cancer stories. They’ve got to be on that Colon Cancer Podcast.

Lee:                 So, it’s perfectly okay that we hear Porter in the background. I love it. So, now we fast forward and the story that I saw– well first, how did your story wind up being featured on the news out in Springfield?

Kristina:          Well, we fought a very public battle and we are not very public people, but for whatever reason, I think it goes back to that right people at the right time. I had a friend that I taught with and she said, “Hey, we gotta get people on board. You guys are not going to make this alone. We’ve gotta let people know.” We weren’t even on social media at that time. So, we kept people updated that way, it was easier, it reached masses at that point, so a lot of people in our area, southwest Missouri area, was very aware of our story, and I say that, but there were so many people around the world that were following our story and you’re just kind of like, “Oh my gosh, this is crazy how fast this information spreads.” But with that, I had gotten involved with another non-for-profit organization out of Springfield in which I met somebody who worked for a fight colorectal cancer organization. We were both connected, she mentioned, “Hey, my name’s Danielle and I am a colon cancer survivor,” and I remember just honing in on her, and this was only about two weeks before the news clip aired, and I was like, “I gotta talk to this girl.” And so we spoke and she explained who she worked for and what she did and I was like, “I have to get connected. I have to speak out – we have to fight. There’s a community out there that I need to be connected to,” because you only understand colorectal cancer if you’ve been through it yourself or personally fought that. So, she gave me her card and then the organization, I mean, it literally was just an overnight thing where I was involved and I was reaching out to people and we were all connected, and then Danielle had called and said, “We’re needing somebody on the news story and we think yours is great. It’s in the Springfield area, you’re exactly the kind of story that we want to reach mass audiences.” So, I go back to it’s God putting the right people in the right place at the right time and that’s certainly what has happened in just the last month.

Lee:                 And how much response have you received since the story aired?

Kristina:          Well, including you Lee, it’s crazy the amount of just– all the way across our country people are like, “Hey, I can relate. Hey, I know so-and-so,” and I think that is the biggest thing. The other non-for-profit organization I was involved with is called Seven Billion Ones, and the premise is that we’re all connected somehow. We all have a story that we can relate to and we need each other to lean on, support each other, be there for each other, understanding when nobody else simply can unless they’ve lived a very similar story than we have. So, being able to connect that way I think has been the greatest thing and just using a very negative to turn into a very positive outcome that we can all reach together now that we’re all involved together. So, lots of feedback. It’s kind of shocking, but it’s a good thing.

Lee:                 It is a good thing. I mean, there’s just the fact that, like you said, you’re able to take a negative and turn it into a positive, and you and I are speaking over Skype and I’m looking at you and I just see the glow in your eyes as you’re talking about being able to share your story, so it clearly has made an impact on you and I can see it right now. So, as Porter gets older, what do you want to know about why you’re doing the work that you’re doing? I’m assuming that you’ll keep doing this and eventually he’ll say, “Why are we going to this run? Why are we doing this event?” Have you thought about what you’ll tell him?

Kristina:          First and foremost, for him to never forget his dad. Ever. And obviously that’s a very emotional, raw side of this whole situation. At three years old and at fourteen months old when his dad passed away, he should have no living memory of his dad, I mean, scientifically speaking. But the bond that they did share and continue to is unreal. He tells me stuff that there’s no way he should ever know. He does stuff that there’s no way he should know and it is his dad all over. So, first and foremost to keep his dad alive, but I think that the bigger premise here is to remember that no matter what dark storm you walk through, there are so many positives along the road and in the end of the journey, too. Our darkest time of our life was certainly those sixteen months, and the most beautiful moments in my life happened in the very darkest moments in my life too, so I want him to always remember that no matter how bad something can be, you can always find love and beauty in that. And then of course, you go to the health side of it, and I always want him to know this is a part of you. The day that the surgeon came in to talk to us about our options after they had told me that Joe had cancer, he looked right at me and he said, “Boy, girl, whatever you’re pregnant with, you need to have them checked too, because 50% chance they will have it as well.” And I remember feeling like somebody had kicked me in the throat, but he’s exactly right; there is a 50% chance. And I told Joe on his deathbed, “I will never watch my son go what you’ve been through. I will be proactive. I will contact every doctor – whatever it takes to make sure that I never watch him suffer the way you do.” So, with the moral piece of it, which is first and foremost in this whole situation and as we continue to fight and be proactive and be a voice for colorectal cancer, I want him to keep his health at the forefront, and to remind others to keep that at the forefront of anything that they’re doing. And he’s three and he’s already seen a specialist and I stay in frequent contact and we’re taking all avenues to make sure that he is protect and he is safe so that if this were to ever come about, we know we have a plan of action and know exactly what to do. But you know Lee, even over health, love trumps it all, so I just want him to remember the love that has come out of all of this, for sure.

Lee:                 Well, it sounds like having you as a mom that that’s not ever going to be a possibility that that won’t happen. Good for you. Good for you. And did I understand correctly that Fight CRC is actually moving to Springfield?

Kristina:          They are. And again, I think right people at the right time, again. But they are, yes. We’re moving to Springfield, Missouri, and it really centralizes just us being right here in the hubbub, the very central part of the country, which is an amazing opportunity for me just living close to there, but really also reducing a lot of overhead cost that we had over in Washington, DC and being able to lower that cost, and then those funds are able to go out and really help patients and families that are fighting colorectal cancer.

Lee:                 Great. So, what words of advice would you have for people that may be a little hesitant to get involved, to volunteer? Here’s your chance to motivate some folks.

Kristina:          Alright. Just like your health, I would just say don’t hesitate. If it’s on your heart, it’s on your heart for a reason. And God gave us a voice and I joke and say my husband was as quite as I am talkative, but he gave me a voice for a reason, and I’m passionate and I’m fired up, and anytime that something impacts you so deeply and you feel robbed of your life, there is justice and there is a way to ensure that others never have to experience that. And with this opportunity and with Fight CRC, jump on board any way you can help and get that message out there. We do have taboo that goes along with colorectal cancer, because no one wants to talk about their bowel movements or their booty, but the truth is if we don’t, like Joe didn’t, we waited too long and the result is there’s nothing to talk about now. So, you need to talk about what you need to talk about now or you’re going to wait until it’s too late and there’s nothing to talk about. We have plenty to talk about; it’s the second most deadly cancer in the country, in the world, and it’s taken too many lives, and it’s not going to stop until we have enough people stand up, rise up together, and make a loud voice about it.

Lee:                 As we wrap up, Kristina, what other words of advice would you have for someone that’s grieving the loss, grieving that someone near to them passed away from this disease? Having been through it yourself, what words would you share with that person?

Kristina:          Grieve. Not according to anybody else, not according to any book or to any counselor or professional, but grieve how you need to grieve. So many times people want to say, “Yeah, but,” and as soon as I hear “but” I forget everything they said before that. Cry, reach out, spend quiet time, whatever you need to do for your heart to feel better. Mine personally has been to write and to journal and to write our story down. For some reason so much of that was forgotten because everything was a quick decision. But grieve how you need to grieve, and when you’re ready, not when anybody else needs you to be ready, but when you’re ready, then fight back. Find your voice again. But I don’t think my voice would even be as strong as it is today had I not taken my time to be able to just grieve. And that was a lot of sleepless nights, because there’s still a baby to take care of, but I just needed to grieve, and it didn’t look like how anybody else had described their grief or other grief that they had heard of, but it was my grief. And I’m standing here strong today ready to fight back because I was able to grieve my grief, so that would be my– not a timetable – it’s your timetable and it’s your grief and it’s all going to look different, so do what you need to do to make your heart feel pure again.

Lee:                 That’s so beautifully put and I really appreciate that. And for those who haven’t had a chance to listen, including you in this Kristina, too, if you visit The Colon Cancer Podcast.com, my interview with Tom Zuba who was the author of the book Permission to Mourn: A New Way to Do Grief, was just one of the most inspiring, thought-provoking, and compelling interviews I’ve had the pleasure to participate in, and Tom is just an amazing guy and it’s great. It was just wonderful to hear his perspective on grief, so for those of you, take Kristina’s advice, but also check out the website and listen to my interview with Tom Zuba – it was pretty special. Well, Kristina, thank you so much for spending some time with us. I just wish you nothing but great things ahead for you and for Porter. Thank you, as you said, for taking such a challenging situation and a tough situation and turning it around and looking to find a way to make a difference and inspire other people. You clearly are a shining light.

Kristina:          Well, I appreciate that. I always say I just hope that I’m making Joe proud. So, with whatever that we do, I hope I’ve got a special angel proud of us.

Lee:                 I have no doubt.

Kristina:          Thank you.

Lee:                 You take care.

 

Kristina:          You too. Thank you.

 

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