Caregiver Stories: Brexit and Emoji

First Descents (FD) is honored to announce a new collaboration with EMD Serono, Inc. and the Embracing CarersTM initiative. This global initiative, in collaboration with leading organizations around the world, is working to increase awareness, discussion and action about the often-overlooked needs of carers. With EMD Serono’s support, FD will expand its caregiver programming in 2021 and provide the FD experience to caregivers for people living with Multiple Sclerosis (MS) for the first time, as well as support existing programs for those impacted by cancer and other serious health conditions. This collaboration makes this organizational milestone possible and we are thrilled to extend the healing power of adventure to more caregivers within our community.

Together, we will be elevating the stories and experiences of caregivers in the months to come. To kick things off, we sat down with FD Rock Nick “Brexit” Doble and his partner, FD Alumni Katie “Emoji” Doble. Below is a summary of their candid and raw conversation about what FD means to them, how life has changed in the times of COVID-19 and who gets to go to the grocery store.

FD: Thanks for taking the time, friends. We’re so excited to learn a little bit more about the experiences you two have had with FD alumni and caregivers. Could you kick things off by providing us with a little bit of background information on your diagnosis and treatment journey?

Katie: Absolutely. I was first diagnosed in May of 2013 with ocular melanoma. This cancer, which develops in the cells that produce pigment in or around your eye, affects 6 in a million. I was told there was a less than 2% chance of metastatic disease. I had plaque radiation therapy targeted to my eyeball. That was in May. 

In the fall, that October, I met Nick, and our relationship was very quickly very serious. A year later, in November 2014, he had bought a ring and was planning on proposing. That same November, I went in for a routine liver ultrasound. When ocular melanoma spreads it typically spreads to the liver or the lungs, so I was getting periodic ultrasounds of the liver and the x-rays of the lungs. I had had one seven months prior which was totally clean. But on this liver ultrasound they found 12 suspicious lesions. It was a Tuesday, and Nick still got down on one knee and proposed to me on Thursday.

Since then I’ve been in and out of three clinical trials, I’ve had two liver embolization procedures, one gamma knife procedure, and right now we are entering eighth or ninth treatment rodeo. We’re going to explore tumor-infiltrating lymphocytes (TIL) therapy in Pittsburgh next week.

FD: That’s quite a journey…thanks for sharing. When did FD come into the picture during all of this? 

Katie: I went on my first FD week-long program in August 2017. Then after I went on an international FD adventure to Croatia in May 2019, I sent Nick information about a caregiver program. I wasn’t sure if he would be interested or if he would go because he had some hip issues. He really thought seriously about it, and when he committed, I was just super giddy.

It meant so much to me that he could go. We’d been in and out of treatment and it was just a rough go a few years ago, and I remember going to a family event and Nick said something to me on the drive home. He said, “nobody ever asks how I’m doing.”

He said, “nobody ever asks how I’m doing.” 

I was so heartbroken by that. I was devastated to hear him say that, it really upset me, and so when I heard about the Caregiver Program and knew that he could get the kind of support that I had gotten from FD, I just couldn’t wait for him to get out there.

FD: Nick, could you talk a little bit more about that?

Nick: Yeah…Generally speaking, the caregiver community doesn’t get much from doctors. They really don’t ask anything at all like, “How are you doing?”, because the patient is the priority of who they’re dealing with. At the start of our fight in 2015, few people were proactive to reach out and offer support to me. I got the odd person saying, “Oh if you ever need anything let me know” but it didn’t feel genuine. There was little follow up and people checking in again. Everybody thinks about the patients because they’re going through a lot, but not necessarily the caregiver who is there to support and go through the ups and downs at the same time. So, I think it’s great that First Descents recognized that and then said, “Hey we need to support you, who is supporting a cancer patient too, and provide you a great experience because you’ve been through a lot.” And it was incredible, just meeting so many people that could share their story and how they feel and you could build great relationships and get to know people.   

FD: Definitely. We hear from a lot of caregivers and alumni that community is one of the most important parts of the FD experience.

Katie: Yeah, I feel like we each have formed a community. Both together as a couple within FD, and then also individually. And that has been really important. I love that he has his FD support group; I love that he can text his FD “Rocks” when something happens with me and know that they understand. In fact, his Rocks have been hit pretty hard this year, and they’ve all got a lot going on. One’s wife passed away. One’s wife has not been doing well lately. Another is in treatment. And, knowing that he can have those people…just knowing that when things get rocky for us, he has that group to go to makes me feel better. That resource, that outlet.

Nick: One of the caregivers I met on that FD program is supporting his wife who is in treatment right now for the same type of cancer as Katie. 

Katie: Yes. That’s right. She’s in treatment as well…She’s another alumna with ocular melanoma like me, and there aren’t a lot of us. She did a post on FD’s Facebook page a year ago and within 30 minutes we were on the phone. Laughing and crying. When we got off the phone her husband said to her, “I haven’t seen you smile in two weeks.”

And then when the Caregiver Program was filled, she texted me and said, “Oh my gosh, my husband is going to be there with your husband.” She and I have never met in person, but for Nick to be able to meet somebody who was supporting his spouse through the same rare, scary disease has been really special.

Nick: Lately, the two of them have been in ocular melanoma treatment in Philadelphia as well, and so it’s interesting to see them share their adventures as they get treatment during COVID-19. It’s a different world. It gives me ideas about how to prepare for when we go to Pittsburgh for Kate’s TIL Therapy. It’s been such great continuous support that I’ve received as Kate’s cancer has been changing lately. 

Katie: It’s a scary time in general, for everyone, and the fact that we’re heading back into treatment right now is pretty terrifying for us. So, having that community means the world. Having that now and always has always been beneficial.

Nick: That’s probably the biggest piece for me. That people do get it and do understand and can be empathetic with us about our experience. I keep them up to date on what’s happening with Kate and they all share what’s going on with them. 

FD: That’s incredible. The FD community definitely has a way of showing up for one another. And right now, providing that sense of support and care is taking on a whole new meaning during the pandemic. How has navigating COVID-19 played a role in your relationship and with both giving and receiving care?

Katie: Now it means more than ever. I joke that I’m grounded and that I am living like a hermit. And it’s hard for me, because I’m a huge friend hoarder. At one point, I was starting to be like, “Okay well I’m stable, and I’m really healthy, and my immune system is great,” so I was getting a little bit lazy. I hugged my nephews and my niece one day. I had even literally begged Nick one day to let me go to the grocery store with him. And then I realized I can’t even do that. Then we got my news from my latest scans, and that kind of changed everything.

Nick: I have to be a little understanding…I hate going to the grocery store and she was like, “You’re just lucky to be able to go to the grocery store.” I definitely don’t feel “lucky” to go to the grocery store, but I have to recognize that like Kate’s not going out, and actually going to the grocery store is like going to a theme park for her. 

Katie: It’s LUXURY. It’s a luxury vacation. 

Nick: Whereas for me, I used to work in a grocery store and I cannot stand being in that place. 

Katie: So, as he’s leaving the house dreading it, I’m watching him go and I’m just like so insanely jealous… 

But what’s been really tough is having to go to the hospital and knowing that we’re dealing with a life or death issue right now, and travelling and being out in public is also a life or death issue, and that is horrifying for us. My anxiety levels have been through the roof this year. I have been an emotional rollercoaster. It’s very common for me to look perfectly happy and normal and then suddenly I’m totally crying, and Nick is like, “What just happened?” 

And this fear – this constant fear for my life – which I’ve had for seven years, but now there is COVID-19 fear for my life added on top of it, and knowing that a misstep or anything minor could affect my ability to receive this life-saving treatment, it’s just…it’s a lot. Knowing that we have to get on an airplane to go to Pittsburgh and receive this treatment is what keeps me up at night. It’s been really scary, and Nick has been so supportive.

FD: That really resonates. How are you two navigating it as you prepare for Pittsburgh?

Katie: We talk about every move each one of us makes outside of the house, and how it impacts both of us. And we are gearing up. I think we are going to have a whole suitcase full of gear next week when we go to Pittsburgh, so we’ve talked a lot about how we keep safe, where’s the best place to stay, what do we physically wear on the plane, and all of that. He’s going to essentially wear ski goggles and I’m going to wear a face shield. And then we’ll wear our masks. 

It’s been a hard year. It’s been a hard year for everyone, and for us getting hit with this news after 3.5 years of stability in my liver was pretty devastating. I know that he has to make a lot of sacrifices for me, and I’m very grateful and I know that he does that without complaining, and that his number one concern is what it has always been, which has been to keep me safe and get through this together.

Nick: Yeah. We’re in it together. And I’ll just say that I’m so grateful, again, to FD for the experience. The group we had was absolutely amazing. I love all of those people, they’re an incredible bunch. And if any of them need any support, I will be there for them. And they for me. I don’t know how you can put a value on that type of experience, so thank you so much. 

Katie: Yeah. It’s been an amazing community and a huge part of the journey for us. We are forever grateful to be a part of it. Again, I’m going to get emotional, but Nick’s just… he’s my rock. We’ve created this amazing life together through the shitstorm we’re living in, and I’m just so grateful to him. To be able to nominate him for this opportunity knowing what an amazing week it is, and what an amazing adventure it is, made me feel like I was scratching the surface on giving back to him what he has given to me. 

FD: Thanks, friends. We’re so lucky to have you both as a part of the FD community, and we appreciate you sharing your perspective. It means a lot.

A huge thanks to our partners at EMD Serono for sponsoring FD Caregiver Programs. With their support, more caregivers will experience the healing power of adventure, enabling them to connect to their fellow peers and return home with a new shared connection to their loved one. It is an unspeakable privilege to do this meaningful work. To learn more about EMD Serono and the Embracing CarersTM initiative, visit the website here.

Interested in other caregiver perspectives? We sat down with FD Rock Alum, “Moses,” to discuss one of the most important, and overlooked, questions posed to caregivers: What are you doing to take care of yourself? What do you need? Read his powerful, sincere advice here!

About Embracing Carers: 

Embracing Carers™ is a global initiative led by EMD Serono in collaboration with leading caregiver organizations around the world to increase awareness and discussion about the often-overlooked needs of caregivers. In the US, Embracing Carers™ is advised by the Caregiver Action Network and the National Alliance for Caregiving and collaborates with leading patient organizations to develop tangible supports for caregivers.

About EMD Serono, Inc.:

EMD Serono – the biopharmaceutical business of Merck KGaA, Darmstadt, Germany in the U.S. and Canada – is engaged in the discovery, research and development of medicines for patients with difficult to treat diseases. The business is committed to transforming lives by developing and delivering meaningful solutions that help address the therapeutic and support needs of individual patients. Building on a proven legacy and deep expertise in neurology, fertility and endocrinology, EMD Serono is developing potential new oncology and immuno-oncology medicines while continuing to explore potential therapeutic options for diseases such as psoriasis, lupus and MS. Today, the business has approximately 1,500 employees around the country with commercial, clinical and research operations based in the company’s home state of Massachusetts. www.emdserono.com.