Patient Spotlight – Milestones after a stage IV diagnosis
Featured:
Shyreece Pompey, Woodland, California
Juanita Segura, East Chicago, Indiana
Cori Casebeer, Redding, California
In this newsletter, we are celebrating milestones. A cancer diagnosis (even at stage IV), while devastating, can often open up new doors and lead patients to a new calling in life. We interviewed Shyreece who has written and published two books; Juanita who has become a foster parent together with her husband; and Cori who found the love of her life and got engaged to him amidst her diagnosis as well as a global pandemic. Three very different stories, but each one bringing unique hope, perspective, and inspiration! Enjoy!
Shyreece Pompey, Woodland, California
1) Can you tell us a little about your journey with lung cancer?
I was diagnosed in March 2014, with Stage IV NSCLC ALK-positive. I was born on Valentine's day; I'd just turned 43 years old then. The diagnosis came two weeks after being hospitalized, during which time I underwent a VATS procedure that sealed my pleural lining. The procedure was effective for me and I started Crizontinib as 1st line of defense in April 2014. I successfully stayed on Crizontinib for 36 months. When brain metastasis became evident and Crizontinib was no longer effective, I started Alectinib in May 2017.
I turned 50 a few months ago. Also, this past March 14, 2021, I celebrated my 7-year cancerversary. May 2021 makes it 48 months for me on the targeted chemotherapy Alectinib at total dosage. I have learned how to manage specific noticeable side effects very well thus far. I follow my instincts and work cooperatively with nurses, physician assistants, and oncologists too. I am proactive and advocate for myself and others. I take on adventures, like skydiving in July 2017.
There is a great advantage when finding the ALK Positive Support group early on in your cancer journey. Still, no matter when you join, the members are welcoming and will support you in your journey without hesitation or further ado. I am thankful I found the ALK Positive group that I joined sometime around August 2019 (about 5.5 years into my cancer journey).
It took some time to get to a place of peace, but I am happy and am okay with what happens when any treatment no longer works for me. I have HOPE! When I was diagnosed with cancer in March 2014, I refused to ask God, "Why me?" I hated the thought of even asking God for anything at the time of my diagnosis. Instead, my response at the time of diagnosis was, "Thank you, God, for all you've done for me." Staying in a surrendered posture helps me walk humbly with my God through my suffering. It has been seven years now for me, and as Maya Angelou would say, "I wouldn't take NOTHING for my journey now." I wrote about my first six years of living with this cancer in my book called "HOPE: It Will Not End with My Death." My faith teaches me that everything is working for my ultimate good in life now and eternity.
2) You have now written and published two books since your diagnosis. The books are titled 'HOPE. It Will Not End with My Death" and "Fruititude - Growing Spiritual Virtues through Adversity," and both are available on Amazon. Tell us a little about these books. What are they about, and what inspired you to write them? Any more books in the pipeline?
“HOPE: It Will Not End with My Death” is an authentic, real-time account, written in a journal-like format with medical notes of how I rely on the Word to guide me as I live through my cancer journey. "Fruititude: Growing Spiritual Virtues Through Adversity" seems to be gaining attraction and has been republished by Dorrance Publishing. I can't help but to spend a little more time talking about that book. This faith-based primer is for troubled youth or teens, young adults, or even mentors who wish to walk alongside them when experiencing adversity. Young married couples starting their own families can use this primer to begin healing from past broken relationships. It’s great for youth group Bible studies or small group talks. I used vignettes, fruit facts, and Biblical truths to teach obtainable divine characteristics. For example, one experiences a variety of precise difficulties, such as having PEACE when cancer strikes a family member. "Fruititude" uses personified fruit characters who go through relatable circumstances that broken individuals or families can identify. Through the book, strategically written with the wisdom of the Scriptures, reflective drawing/journaling, and cooking, individual families can begin to heal from traumatic experiences.
Three reasons inspired me to write during my cancer journey:
I wanted to leave a legacy of influence for my grandchildren. In the case that my grandchildren should ever ask, "what was my grandmother like?" they could search for my books and read and find me between the lines of the literature I left behind.
I was ready to advocate and teach perseverance for so many issues that I had to overcome in my life. Cancer is just one of many adversities that I had to face down.
I knew that I had a profound talent for writing that I NEVER believed would surmount because I was diagnosed with Stage IV lung cancer. To face down that fear and publish was the most internal victory that I've ever experienced.
I want to write one more book that I know would greatly benefit women of the world who may have experienced trauma. I want to write it before my quality of life is highly challenged. Cancer-related symptoms or side effects can be a vast distraction when authoring books that provide healing to anyone trying to overcome insurmountable odds.
3) Did your diagnosis play any part in your being inspired to become an author? Was it a dream you always had, or did it become a calling and a focus after you faced the adversity of a stage IV lung cancer diagnosis?
My diagnosis was the gasoline poured on a fiery spark that was already kindling inside me that propelled me to author a book RIGHT now. I should say that the book was already in me. I just had to face the fear of death so that I can LIVE to GIVE. It was a now or never moment for me. Besides, I wanted to make the best usage of my time being on a targeted chemotherapy treatment that is working well for me. Those of use on TKI's know that they could wear off at any given moment.
4) What would be your advice to members who want to follow their dreams, be it getting into writing or any other calling? How can they stay motivated, and how can they positively and productively use the adversity of their diagnosis to put themselves out in the world and shine?
I love this question. Four tips to treasure while you have any breath of life in you.
Face your circumstance with thankfulness so that you can see what you have left to give. If you're not dead yet, you still have something to offer. Do some soul-searching and find out what do you still have left to give. It will be in the form of TIME, TALENT, or TREASURE.
Stay grounded and present. There is always something going on around you. Get your hands in the soil (so to speak). Here the footsteps of you pressing on. Work on short-term family or community-related goals. It's about staying connected and involved with life as much as possible.
Surrender to your call in your current season. Many cancer patients had to walk away from careers, jobs, or lives they had before diagnosis. Grieve it a little, but don't stay stuck. Surrender to a new call that's on your life. I dare you to follow your dreams despite your obstacles. I know you still have dreams and ambitions because you were created on purpose, so you have a purpose. Do something that brings a little more light to your day or somebody else’s.
Let go of weighty matters that do not add value to your life. Letting go of serious, negative, unproductive issues of the world is how I stay motivated. Cancer patients must preserve all the energy they can. Love is the most significant positive energy that keeps me motivated and inspired to give my time, talent, and treasures no matter if I get it back in return or not. I've learned how to surround my house, life, atmosphere with peace, love, joy, and more. That, my friend, is "Fruititude".
Juanita Segura, East Chicago, Indiana
1) Can you tell us a little about your journey with lung cancer?
I was diagnosed with stage 3B NSCLC in November 2014. I went through chemo & radiation for 6 weeks. When that didn’t work, I started on targeted therapy (Crizotinib). That only worked for 3 months and then I started on Ceritinib. I have been on Ceritinib for 6 years.
It’s been a rough journey because after being NED for 4 years it came back and now I have two small spots in my brain. They are stable, thank goodness, but it’s being monitored every three months with MRI.
I just continue to stay positive, strong and faithful! I speak healing over my body, and I tell myself every day that I am healed and cancer-free.
2) It is our understanding that you and your husband applied and were approved to become foster parents after your diagnosis. Tell us a little about this experience. What called you to it and how has it been so far? Was your diagnosis an issue to getting approved as a foster parent?
A pastor from a local church told my husband about this organization that will be renting room at his church and they place kids that are crossing our southern borders with family here in the states. My husband was really interested in doing this to help these kids out, so we decided to become transitional foster parents to these kids since we are fluent in Spanish. We went through classes and training for about 8 months and we finally got our license last year. But we didn’t get any children until this year because of Covid.
I was a bit worried that they wouldn’t let us be transitional foster parents because of my current situation but they had no problem and thought it was brave and kind of me to do this. It has been a very humbling experience - it’s a kind of love that I cannot explain, but one thing I do know is that these kids are beyond grateful for us opening our home and hearts to them. I hope that the love and kindness we’ve shown them will carry on for the rest of their lives. So far we’ve housed 5 kids: two 16-year-old boys from Guatemala, one 9-year-old boy from Guatemala and a 16-year-old girl with her 1-year-old daughter from Ecuador. When they do leave, yes, I cry like crazy because I worry about their future in this country. So many are against illegals, but they come here to seek asylum and a better chance in life. The stories these kids share with us are heartbreaking and I’m so blessed that I can be a part of helping them make a better life in this country. The two boys from Guatemala have stayed in contact with us and we plan to go see them soon.
3) Did your diagnosis play any part in making this decision? Was this something you always wanted or was the desire to serve as a foster parent born as a result of facing such a diagnosis and seeing life a different way?
No, my diagnosis didn’t really play a part, I was just hoping they wouldn’t tell us “no” and thank God they didn’t - they actually embraced it. Yes, I think facing such a diagnosis you see life in a whole different way and so I took that chance and hopped on the opportunity to help the kids out and I’m so glad I did. I now see life in a different perspective and if I can help and give hope in any way possible, then I will. These kids are human beings and they just want a chance in life and I will do just what I can to help them get a chance in life.
4) What would be your advice to members who may want to become foster parents themselves? Any challenges they may need to be mindful of? Any good tips on approaching the process or their diagnosis if it’s brought up as a potential issue?
I say, just do it! Whether it’s transitional foster parenting or just being foster parents. These kids just need a loving home, advice, structure, they want to be and feel loved and wanted. So many even here in the US are traumatized, malnourished, abused and they need loving people like ourselves to help them so they can be a part of society and not end up on drugs, prison or even dead. Open your hearts and home to them and show them that people and the world are good.
Yes, of course there are challenges – remember, these kids come from an abused home/parent(s), they’ve been neglected, left alone, sexually abused, and are traumatized, but YOU can be a part of their healing process and show them that they are loved and were born for a purpose. These kids need us be a part of their lives even if it’s for a short period of time. It’ll help you as well as them. I truly encourage it.
Cori Casebeer, Redding, California
1) Can you tell us a little about your journey with lung cancer?
I was diagnosed at age 32, Stage 1B. I had known that I had a nodule in my lung for a year and a half, but because of my young age and being a non-smoker, the doctors opted for a “wait and see” approach. When it started to grow, I had a biopsy and it came back Adenocarcinoma, ALK+. To say my family, friends, doctors and I were shocked is an understatement. I didn’t even think it was possible for non-smokers to get lung cancer. I had an upper left lobectomy and all the lymph nodes removed came back clean. When my sister and I talked to the doctor about the 20% recurrence rate in lung cancer for my stage, she and my nurse navigator dismissed our concern. They hugged me and told me not to worry, that we got it all and I was cured. When it came back a year and a half later stage IV I was devastated; and so was my doctor. I was a week away from turning 34. When my cancer recurred, 2nd generation ALK inhibitors were not approved yet for first-line use. But data was showing that this would soon become standard of care, and because my doctor was very well respected in the field, she knew this. As I was already at an NCI-approved teaching hospital, my doctor immediately got me on a Clinical Trial for a 2nd generation ALK inhibitor called Ensartinib (X-396). I started it 3 weeks after my recurrence and, amazingly, I am still on it. I am celebrating the 5-year cancerversary of taking my first dose of it on May 26th.
2) You did not give up dating despite a stage IV lung cancer diagnosis and not only did you manage to find love, but you even got engaged this past Christmas, in the midst of a pandemic no less. Now, that is an amazing milestone! Congratulations to you and your future husband! Tell us about how you two met and ended up becoming engaged.
I met my fiancé on the dating app Tinder. The moment I started messaging with him I knew we had a unique connection; our conversation just flowed. But then some red flags came up: he kept claiming that we had very unlikely things in common. For example he said that he had grown up in the city I had lived in for 8 years and just moved from, and that not only had he heard of my favorite band (who are a little obscure) but he had hung out with them in the 90s. Then the kicker came - he said that he actually had tickets to see them in 3 weeks…and he just happened to have an extra ticket. By this point I was sure that this guy was catfishing me. There was just no way. But, because I felt such an amazing connection with him, I put to use my Internet sleuthing skills. With just his first name, and his mention that he worked in a restaurant, I found him on the Internet (yes, I’m that good). And not only was he a real person, but when I also found his Facebook profile I saw we had 2 friends in common! I immediately messaged them and they gushed about how great he is. Stunned, but excited, I agreed to go on a date. We played miniature golf and it was the best date I ever had; I didn’t want it to end. On our second date, we went to a beautiful waterfall and had a picnic. I learned there that his parents are neighbors with my mom. Yes, really! Our third date was the concert for my favorite band. We’ve been inseparable ever since (except for six weeks at the very beginning of the pandemic where we “window-dated”: literally had dates through my patio glass door). His children, his parents, and even his ex-wife have all been so welcoming of me to their family.
3) We’d love to know how you approached dating with your diagnosis – were you upfront with everyone from the very beginning or did you only discuss it with those dates that looked promising? Did you get any weird comments or reactions? How did you keep your focus on your dream to find love and did not let your diagnosis discourage you?
One of the first things I said to my closest friends after the news of my recurrence was that “no one will want me now.” I didn’t say it, as so much bawled it. I had a lot of unresolved pain and fear from my previous serious relationship: when I was first diagnosed, the man I was with couldn’t emotionally handle it. He quickly disappeared into excess work, excess alcohol, and eventually left altogether for a different life with a 10-year younger woman. I was convinced that if he didn’t want me, then no one would. They assured me I was wrong, and wow, I am happy to say that I have never been more wrong about anything in my life. I’ve since learned that there are two types of people in this world: those who run toward people to help, even when it’s hard, and those who run away.
After my stage IV diagnosis I did lose friends, those who ran from me and the pain I could bring them. But so many more ran toward me. Dozens of people: people I used to babysit for as a teenager, people I went to high school with and barely knew, people who I used to be close with but fell out of touch with. I learned that people being there for me actually had very little to do with me. It has to do with them: the kind, selfless, helpful and most important - resilient - people they are. This changed my perspective and I realized that even with stage IV cancer I am not un-dateable. And suddenly, with that realization, I had a group of guys in my orbit, past acquaintances/friends who wanted to date me! It was such a healing (although weird) experience. My first boyfriend post-recurrence was one of the guys. It was a relief that he already knew about my cancer. He taught me that I am loveable, and helped me realize that two of the most important traits I want in a long-term partner are true kindness and resilience.
After he and I broke up, I went to the dating app Tinder. I was really nervous about meeting people and having to tell them about my cancer. I didn’t know how to do it or when to do it. I messaged with a lot of guys, and decided to just have fun and be myself. After all, cancer isn’t who I am, it is just one small part of me. I also decided that I was only going to tell them if we started dating. I did this because, honestly, I was scared of their potential reactions, and also, I wanted to live and feel normal. Cancer takes up so much of my life that I just wanted to feel like my old self again. I chose only one person to meet up with, and after a few months of casual dating, we started to get serious so I knew I had to tell him. Oh, I was so terrified. My old issue of believing that he would leave if things got hard came roaring out (funny how you think you’ve dealt with an old issue, only for it to come roaring back again!). Telling him was one of the hardest and bravest things I’ve ever done. To finally do it I got drunk and ended up crying almost non-stop…it was not my best moment. But he held my hand, listened, asked good questions and then said “well I don’t know how to feel about this, but I do know that nothing has changed. I’m not going anywhere.” We dated for a year.
When I met my fiancé I actually told him on the first date! We had such a good connection so quickly that it felt like a betrayal to not tell him. I was still scared, but for the first time I felt confident that he could handle it. He was a little in shock, but took it well. He hugged me for a long time and said that he was so sorry that this has happened to me. And he told me that “of course he still wanted to date me.” After a few dates he told his kids as he wanted to make sure they were comfortable with it as their mom had dealt with breast cancer a few years prior. Around this time, I knew he was the partner I had been looking for. In addition to all his other amazing qualities, he was incredibly kind and resilient. He was running toward me, cancer and all, instead of running away. And really, isn’t that what we all deserve, cancer or not?
4) ALK-positive lung cancer affects a disproportionately large number of young, healthy people. A lot of them are just like you – young people in their 20s or 30s who may not have yet found a life partner or started a family, but would like to. What would be your advice to those patients who want to try getting into the dating world? How can they approach their diagnosis with potential dates to boost their chances of meeting the right person?
One of the silver linings of having cancer is that you can use it to weed out those who would not be good long-term partners, simply because they will not stick around or be adequately interested once you tell them. This can be painful, but it is important to remember that you don’t want them anyway, they would be poor partners.
My advice to those who would like to start dating is to first believe that you are a catch, cancer and all. And to truly believe that you are worthy of love no matter the circumstances. And lastly, to look for a partner who is kind, communicative and resilient. You will need those traits in the years to come.
Interviews by: Christina Weber