Kathryn relocated to Boston to be close to her care team here at Mass General. She finds strength through her faith and support system, and as a friend once told her, she looks for “the blessing every day; there will always be at least one.”

How has your outlook on life changed since being diagnosed?

"It is an ebb and flow, so there are some days where I’m very upbeat and I feel like making plans for the month, and then there are times where I am arranging my funeral. So, it depends on if I have new symptoms, if I have a new twinge or whatever, and I’m brought back to the reality of ‘we don’t know.’ I think overall, my faith, I’m a Christian, was baptized Methodist, went to Catholic high school, Presbyterian college, married a Lutheran, so I’m basically Protestant, and God has just been so good and there are so many people praying for me that it just lifts me, carries me. So on days I can’t pray or don’t feel good, there’s always someone who sends a card or gift or a call or a text, and it’s just spread out perfectly. There’s not like a big glug and then nothing, it’s like it’s all orchestrated… and it has to be divine."

"For example, last Friday I was so tired from radiation that, for the first time since I’ve been here, I couldn’t walk back to my apartment. And I had gone to get triple max, which is a thing to coat your throat from the pharmacy to numb it so you can eat, and I got the prescription and I just sat there, for forty minutes. I was texting my sister and I was just not motivated to get up. I called my husband a couple of times but he was sleeping, but then he woke up and I said let’s go. He said ‘you don’t feel good, let’s do it tomorrow, just come home.’ So I thought ugh I should really go home, but I couldn’t. So suddenly I’m in the middle of texting her [Kathryn’s sister], and I think ‘I need to get up right now and walk.’ So I did, and I’m texting her like this [head down], I get past Coffee Central and for no reason, I look up, and right there is our youth minister from Michigan, who moved to New Hampshire last summer. Her husband had a problem with his heart and there were no beds in Bethany. So, he said I want to go to Mass General, and they say to her, ‘your husband needs an emergency pacemaker.’ So, she’s trying to find them, and she’d just come out, and if I had looked that way half a second later, I would’ve missed her. And I was just so tired that day and it was just like, God’s in control. And so, there are things like that all the time."

"One friend wrote me a letter and said, ‘look for the blessing every day, there will always be at least one.’ And I started having that outlook and it has been very helpful. So, I would say overall, I have a good outlook, but it’s also pragmatic and I try and prepare the children and my husband that it’s not that I don’t want to be here, but if I’m not, live your life, go on and flourish. And so, I’ve been trying to do things to prepare them mentally if it doesn’t work out. It’s things like that where I still stay a little grounded even though I know it will work out. So, it’s just kind of balancing that, where I don’t want to get my hopes up, but yet how could I not because there are always blessings, and so it’s always this back and forth all the time."

Did your family come out here with you?

"Yes, my husband came out for two weekends, but since November 30th he’s come and stayed and he works remotely. He works for General Motors, so he can work remotely. My sister came out twice; all the kids came out for the Harvard-Yale game because our son is playing football at Harvard. The girls both wanted him to try for the Ivy’s (to play football), and were completely excited for him that he got the offer, so he’s only been gone, we’ve been empty nesters for a month or two months now, and I’ve gotten to see him every day, just for a minute, and so that has just all been such a blessing. And then my mom came out and my dad came out, so there have only been a couple of days when I’ve been here by myself."

How do you like Boston?

"I love Boston! I could live in Boston. It’s so gorgeous. I love the people, I love the history, I love the proximity. I mean it’s so exciting, and it must be so fun as a young person. I could see my daughter, my oldest, living here. She’s in Charlotte and I could see her loving this place. I love it, I mean we were walking up Beacon Hill, and I’m just taking pictures of it all, it’s fantastic."

What advice would you give to someone going through this same thing?

"I would say my advice would be to admit and allow yourself to be real. Don’t add another layer that you have to be happy all the time, and go ahead and say ‘oh I don’t feel great everyday’ or ‘I need some more help.’ The integrative therapies, the acupuncture, the massage; I’ve gone to twice a week, I love it. I love the art therapy. There are so many resources here. I mean this place is phenomenal, you can’t be anywhere better, and there’s all the support, all you have to do is ask. And so, my advice would be to ask early and don’t give up. We came out of the healing garden and they had all these little felt flags that people had written on, and it was too much to take in, but my twin’s name is Ellen, and there was one right by the elevators that said ‘Ellen you’re an inspiration to all of us,’ and I took a picture of it and had to turn around because I was about to burst into tears because she is everything, she’s so helpful. But, there are things like that everywhere and it’s so pivotal, your best chance is right here."

Is there anything else you would like to share?

"When you’re in a life and death battle… I just really believe Jesus gives us hope. And whenever I didn’t know if I could get in here, I was sitting on the front porch and I had an imagery of Jesus on the waves, and I had the feeling like, I think I heard it on the radio a day or two before, but it came to mind, and it was 'keep your eyes on me, don’t look at the waves.' There are so many things about having a rare diagnosis and a life and death battle that is very undulating and if you look at that you’re going to get sick. And so to just get that straight north and hang on, is all you can do, and whether you live or die is gain. So, you have to have hope that transcends the outcome."

This interview was conducted on December 14, 2016.

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