Survivor Advisory Council & Committee

Survivor Advisory Council Committee is made up of cancer survivors who have travelled the path and understand the journey in a way others cannot. Their wisdom is what makes SURVIVEiT® unique. Each member of the Survivor Advisory Council Committee provided advice based on their unique experience.

Peggy Dennis

Peggy Pollock Dennis

Co-Chair

Q: If you had one minute to tell someone about yourself, what would you say?

A: I am a wife and a mother. I am a seeker and a believer. I had a 26 year career as a licensed massage therapist and Somatic Experiencing Practitioner. I am a vocalist. I love the mountains and the oceans. I love to travel and explore. I am an animal lover. I enjoy reading. I am a meditator and I pray. I find great satisfaction in helping others maneuver through the complex world of cancer treatments and sharing my views on thriving with cancer. I am a student of experiencing life while living in the moment. I am a cancer survivor.

 

Q: Knowing what you know today, what are the first three things you would do after being diagnosed with cancer for the first time? Why?

A: 1. I would do my best not to panic. Fear stops us from recognizing that there are many options when it comes to cancer treatment. Allowing time to digest test findings makes it easier to disseminate information to family and friends. Don’t allow anyone to pressure you into a treatment because of fear. Take the time to become informed.

2. I would seek a second opinion with a specialist in my specific type of cancer. Not every oncologist is a specialist in your type of cancer. Getting a second opinion does not mean that you don’t trust your doctor. You are your own best advocate so seek the best and most up to date options from the specialists in the field.

3. I would ask for my cancer to be tested for genomic mutations and bio markers.

Getting the results from these tests helps inform your doctors to the best possible treatments for your specific cancer. Having these results can also alert you and your oncologist to newly approved drugs and clinical trials.

 

Q: What is the best way to support someone and their family who has just been diagnosed with cancer? 

A: First and foremost: Listen. They have just received a shock and need time to process. Be prepared to answer questions and/or give references to where they can find answers to their questions. Offer hope in the best ways you know how without giving false hope.

 

Q: Where do you find hope, inspiration and strength?

A: I find strength comes from my spiritual beliefs. Hope, I find in stories about others who are on a similar journey. Inspiration, I find in science as well as seeking out others who are thriving while living with cancer.

 

Q: What do you want others to know about surviving cancer?

A: Surviving with cancer is a cyclical process. There will be days that you are not your best and there will be days when you feel wonderful so be gentle with yourself. There will be days that you wonder if the treatment is worth the side effects. Complementary treatments such as acupuncture, massage, yoga, meditation and energy work can go hand in hand with medical treatments. There is also an opportunity to discover who you truly are on a very deep and intrinsic level. YOU choose how to approach your cancer. By this I mean we can choose to live, truly LIVE, without the need to know ‘how long' we have to live.

 

Q: What has been the most rewarding experience in your cancer journey?

A: Meeting extraordinary survivors, doctors, researchers and advocates who share a similar desire to further understanding, research and survivorship.

 

Q: What does SURVIVEiT®’s vision, “Creating a world free from the fear of cancer,” mean to you?

A: Cancer does not necessarily mean a death sentence and there are ways to thrive while living with cancer. By teasing apart my belief’s about cancer, I have found that the best way I can share my love and gratitude for life is to live ‘fear-less-ly’!

Q: If you had one minute to tell someone about yourself, what would you say?

A: Hi! My name is Ashley Williams. In 2015, I was diagnosed with Aggressive Fibromatosis of the left popliteal fossa following a major car accident. This is a type of desmoid tumor, which is a type of sarcoma, that is located in my left knee. So far, I have been through two rounds of chemotherapy, one intravenous infusion and one oral chemo pill. I am a Licensed Clinical Social Worker who has a passion for helping people overcome the emotional and physical trauma they experience as a result of their cancer diagnosis.

 

Q: Knowing what you know today, what are the first three things you would do after being diagnosed with cancer for the first time? Why?

A: 1. Seek support. Cancer and cancer treatment can be an extremely isolating experience. During treatment, I kept much of my emotional pain to myself in an effort to not be more of a "burden" on my family and friends. However, what I really needed was a healthy outlet for those emotions.
2. Research. Upon first being diagnosed, I was in such shock that I COULD NOT bring myself to do any research. Every time I tried the process was traumatic, because there was TOO much information about cancer, and NOT ENOUGH information about my particular diagnosis. However, had I taken the time to do more research upfront, I would have been aware of additional treatment options available to me.
3. Grieve. Upon first being diagnosed, everything can happen so fast. It is easy to jump into all the things that NEED to be done: doctor's appointments, medical tests, etc. I kept myself so busy with cancer and treatment for years, that I never allowed myself the opportunity to grieve. I feel this is such an important step in the process.

 

Q: What is the best way to support someone and their family who has just been diagnosed with cancer?

A: Acknowledge their diagnosis. It's true, most people don't know what to say when someone is actively experiencing a trauma. By default, we tend to ignore it in an effort to "not remind" the individual of the devastation. I can't tell you how many people ignored what I was going through. The slightest acknowledgement and encouragement went a long, long way.

 

Q: Where do you find hope, inspiration and strength?

A: I am a Christian, so I find hope in my relationship with Jesus Christ.
I find inspiration through my support system who consistently encouraged me.
I find strength in setting small, realistic, and achievable goals that I set me up for some type of success everyday. During chemo, a goal may have been as small as going downstairs to get a glass of water.

 

Q: What do you want others to know about surviving cancer?

A: Fighting cancer may be the hardest thing you ever do. Be kind to yourself.

 

Q: What has been the most rewarding experience in your cancer journey?

A: Cancer has taught me so many life lessons: the realization that life is precious and the irreplaceable value of our closest relationships.

 

Q: What does SURVIVEiT®’s vision, “Creating a world free from the fear of cancer,” mean to you?

A: The word "cancer" represents something so vast. There are so many different types of cancer with different levels of aggressiveness requiring different treatment options and bringing about different prognoses. To say cancer is fear-inducing and stressful is an understatement. SURVIVEiT®'s vision is an AMAZING vision. To bring information and resources to one, organized, central hub eliminates that feeling of feeling there is TOO MUCH information on cancer, but NOT ENOUGH information on your particular diagnosis.

Ashley Williams

Ashley Williams

Co-Chair

Tina Trenkler

Tina Trenkler

Council

Q: If you had one minute to tell someone about yourself, what would you say?

A: I love bad old scifi movies, collecting pop culture figures, David Bowie, making trinkets with my 3D printer and a good flowchart. I find my work leading product development and company operations very rewarding. I’m a fairly recent survivor of stage III colorectal cancer and I’m a proud member of the SURVIVEiT® Executive Board.

 

Q: Knowing what you know today, what are the first three things you would do after being diagnosed with cancer for the first time? Why?

A: Find the best oncologist for my cancer. I started by finding the best surgeons and while I had a great team, I realize now that much more of my treatment time was spent with my oncologist.

Talk to someone who has been through a similar diagnosis and treatment plan as mine. While your doctors will give you a lot of information, only someone who went through the process will prepare you for the realities.

Get ahead of the nutrition curve before starting chemo. I became very malnourished making it difficult to fulfill my quality of life goals.

 

Q: What is the best way to support someone and their family who has just been diagnosed with cancer? 

A: Be there for them and let them be there for you if they have the capacity. Try to avoid making your interaction all about their cancer.

 

Q: Where do you find hope, inspiration and strength?

A: First, I reconnected with my best friend, who was so supportive and never let me feel alone.
Second, I’m so happy now that I’m able to use my experience to help others through SURVIVEiT®.

 

Q: What do you want others to know about surviving cancer?

A: Going through treatment and recovery can be hard. But you will feel better and get back to your life.

 

Q: What has been the most rewarding experience in your cancer journey?

A: Working with amazing, inspirational people; helping them take charge of their health so that they can gain confidence that they too, will remain cancer-free.

 

Q: What does SURVIVEiT®’s vision, “Creating a world free from the fear of cancer,” mean to you?

A: One of the frightening aspects of having cancer is feeling not in control. The steep learning curve, abundance and complexity of information and urgency to act makes it hard to know if you’re doing the right things. Knowing that you’ve asked the right questions and explored all the options gives much more peace of mind that you’ve made the right choices.

Q: If you had one minute to tell someone about yourself, what would you say?

A: I was diagnosed with ovarian cancer 16-years ago. At the time I had a two-year old son, was trying to manage my sales career and felt completely stressed and out of balance. Although it was an extremely difficult time, as I had extensive surgery and chemotherapy, I have learned and grown so much from my experience. I look at my cancer journey as a gift because it led me to live my life with integrity; not only allowing me to focus on what is most important to me but to enhance my life in ways I could have never imagined. Consequently, I decided to quit my job and stay home with my son, and my husband and I were blessed to adopt a second son less than a year after I completed treatment.

After learning how to better take care of myself through proper nutrition, managing my stress and getting in touch with what I truly wanted, I felt better than ever. It was then that I knew I wanted to help others feel the same. So, in March of 2011, I decided to attend the Institute for Integrative Nutrition to become a certified health coach. I am now fortunate enough to help others that have been touched by cancer, whether they have a strong family history or want to prevent cancer recurrence. I help them heal physically, emotionally and spiritually, by teaching them the tools of wellbeing- good nutrition, movement, positive thinking, managing stress and getting in touch with one’s true self.

 

Q: Knowing what you know today, what are the first three things you would do after being diagnosed with cancer for the first time? Why?

A: 1. I would research the top oncologists according to cancer type and get more than one opinion on treatment protocol.

2. I would make sure that I had a team of health care providers, incorporating both western and eastern modalities, as I believe that the holistic approach to wellbeing is so important.

3. I would get support from someone who has been in my shoes.

 

Q: What is the best way to support someone and their family who has just been diagnosed with cancer? 

A: Be there to listen to their struggles and concerns and offer them hope, compassion and understanding, as well as empower them to take control of their own health.

 

Q: Where do you find hope, inspiration and strength?

A: I find hope, inspiration and strength from my husband, children, my Jewish faith and the many cancer survivors that I have been blessed to know.

 

Q: What do you want others to know about surviving cancer?

A: I want others to know that cancer can be your best teacher. Although we often ask ourselves, why it happened or did we do something to cause it, I think it is better to ask what we can learn from it.

 

Q: What has been the most rewarding experience in your cancer journey?

A: Working with amazing, inspirational people; helping them take charge of their health so that they can gain confidence that they too, will remain cancer-free.

 

Q: What does SURVIVEiT®’s vision, “Creating a world free from the fear of cancer,” mean to you?

A: I LOVE this vision because with the right tools, we don’t need to be afraid of cancer; with the right support we can heal and live to our fullest potential.

Hayley Dubin

Hayley Dubin

Council

Layne Quigley

Layne Quigley

Council

Q: If you had one minute to tell someone about yourself, what would you say?

A: Hi! My name is Layne von Schaumburg and in May of 2017 my family’s world was turned upside down when my mom at age 56 was diagnosed with metastatic triple negative breast cancer. This experience has impacted almost every aspect of my life, both good and bad. I currently live in Chicago with my husband Zach and our French bulldog, Otto. We frequently travel back to Cleveland, Ohio to spend time with my family. Since my mom’s diagnosis I have turned my passion for cancer and research into a fulltime career at a cancer research start-up here in Chicago. While I hate cancer with every fiber in my body it has allowed me to find passion and purpose in what I do every day, along side connecting with the most amazing patients and caregivers.

 

Q: Knowing what you know today, what are the first three things you would do after being diagnosed with cancer for the first time? Why?

A: First I would encourage you to find hope. Before you can be your own advocate and seek out the best care, you need hope that a positive outcome exists. Next, I would say become an expert in your specific cancer type by researching all that you can get your hands on. Becoming an expert will help have a collaborative conversation with your oncologist rather than a one-sided one. Lastly, I would say be prepared to attack cancer from every angle. By this I mean using both conventional and alternative therapies (approved by doctor) as well as healing both your body and mind. Cancer, especially in the metastatic setting is like a house fire. You cannot put it out with just one hose.

 

Q: What is the best way to support someone and their family who has just been diagnosed with cancer? 

A: Listen and follow their wishes. As much as my mom and I sometimes disagree I always trust that she knows what’s best for herself at the time.

 

Q: Where do you find hope, inspiration and strength?

A: Other survivors and positive stories. There are so many cancer patients out there outliving their prognosis and thriving. Connecting with those patients and learning about their cancer journey offers so much insight on how to navigate your own.

 

Q: What do you want others to know about surviving cancer?

A: As a caregiver, I don’t have the experience of surviving cancer myself but from the outside looking in I think it's important for newly diagnosed patients to know that cancer does not define them and that they can live the same active and fulfilling life prior to the diagnosis.

 

Q: What has been the most rewarding experience in your cancer journey?

A: Witnessing my mom benefit from the science and research that has largely changed the cancer landscape in the last 5 years has been so rewarding. She has been able to be a resource of inspiration not only to other patients but to her doctors. She is proof that there are options beyond the standard of care thanks to the advances in clinical trials and targeted therapies.

 

Q: What does SURVIVEiT®’s vision, “Creating a world free from the fear of cancer,” mean to you?

A: The fear and stress of a cancer diagnosis can be crippling. SURVIVEiT®'s vision to me takes away some of the burden of fear associated with a diagnosis and gives patients the tools and resources they need to seek out the best care and be their own advocate. I believe once fear is diminished you have unlimited power and potential.

Q: If you had one minute to tell someone about yourself, what would you say?

A: I am a father, husband, entrepreneur, and lung cancer survivor who is passionate about physical activities and is trying to remain healthy and focused on life’s priorities that were rearranged after I was diagnosed with cancer. My desire is to spend more quality time with the people I love and give back to the community.

 

Q: Knowing what you know today, what are the first three things you would do after being diagnosed with cancer for the first time? Why?

A: I was fortunate to have a "professional cancer quarterback" at my side since day one. My brother in law Dr. Alexander Krupnick lung cancer researcher at Washington University. This enabled me to navigate and make good decisions from very early on that had a major positive impact on my treatment, recovery, and positive state of mind.

 

Q: What is the best way to support someone and their family who has just been diagnosed with cancer? 

A: Listen. Help with information when asked for. Answering questions specifically while avoiding telling long horror/bravery stories. Point them to SURVIVEiT®.

 

Q: Where do you find hope, inspiration and strength?

A: Looking at my wife and kids, I want to be here for them. I also find strength from within.

 

Q: What do you want others to know about surviving cancer?

A: Stay in the moment, if you think about the bad things that can happen in the future you WILL BE miserable. Be knowledgeable but avoid data oversaturation. There is a lot of crap you will receive from well wishing people, the internet, and more - focus only on the reliable sources of information.

 

Q: What has been the most rewarding experience in your cancer journey?

A: Realizing that this might be an opportunity for my family and I to rethink the next 50 years. Discovering that my way of handling this disease and what I do at supporter size has a positive impact on people. I consider that a gift.

 

Q: What does SURVIVEiT®’s vision, “Creating a world free from the fear of cancer,” mean to you?

A: In my case I wouldn’t know that I have cancer unless I see my Dr. (scans, tests, etc.). I really don’t have any physical symptoms. What’s left for me and my family is the awareness that I’m a cancer patient, which means fear of the unknown and of what can happen. For us, uncertainty is scary, knowledge gives strength, and I can relate 100% to the need of SURVIVEiT®’s mission.

Dolio Kafri

Dolio Kafri

Committee

Jonny Imerman

Jonny Imerman

Committee

Q: If you had one minute to tell someone about yourself, what would you say?

A: I LOVE people! And I love working on projects with people that make the world a better place!

 

Q: Knowing what you know today, what are the first three things you would do after being diagnosed with cancer for the first time? Why?

A: LIVE the life you love! Build things to make the world a better place. Find the BEST people you can in the world and keep them close to you!

 

Q: Where do you find hope, inspiration and strength?

A: My mom, my brother, my friends and people who care about me.

 

Q: What do you want others to know about surviving cancer?

A: That they are not alone! Survivors and good people are here to share, help and support them. TOGETHER we are all stronger!

 

Q: What has been the most rewarding experience in your cancer journey?

A: The ability to share my story, and partner with others, to help the newly diagnosed!

 

Q: What does SURVIVEiT®’s vision, “Creating a world free from the fear of cancer,” mean to you?

A: It means we all work together to help the newly diagnosed keep a HEALTHY MIND and SPIRIT and find a way to win their cancer fight!!!

Q: If you had one minute to tell someone about yourself, what would you say?

A: We are Ed and Sandy Russ. We have an amazing family that we love spending time with. We also enjoy exercising, fishing, and just about anything outdoors. Ed is also a hunter, and Sandy enjoys trying out new recipes. We are both retired. The best things we have done, have always been done together.

We have a strong belief that everything happens for a reason. We may not realize the reason at first, but it becomes apparent at some point. Going through this journey has shown us that although we thought we had a great plan for our retirement years, it was not the path we were meant to take. Since Ed’s diagnosis, we have learned so much about cancer, treatment options, and resources. We want to share what we have learned so that others will not have to go through the struggles of navigating through a journey that most are not prepared to take.

 

Q: Knowing what you know today, what are the first three things you would do after being diagnosed with cancer for the first time? Why?

A: Not be so afraid. Fear can stop you in your tracks, and for some people, they give up before their fight has started. Fear should not determine your future.

Get a second opinion before deciding on a specific oncologist/ treatment facility. Not all treatment facilities and oncologists are the same. Get advanced genomic testing as soon as possible. Understanding your cancer’s mutation is paramount in understanding and choosing the treatment options that are best for you.

 

Q: What is the best way to support someone and their family who has just been diagnosed with cancer? 

A: Listen. Most people are overwhelmed when getting this type of news, and they may just need to have someone talk to. Suggest the patient/caregiver review the SURVIVEiT® website for information, resources, and inspiring survivor stories.

 

Q: Where do you find hope, inspiration and strength?

A: Our faith, our family, our friends.

 

Q: What do you want others to know about surviving cancer?

A: Your cancer journey will likely be the hardest thing you ever experience. Do not lose hope. You will find strength that you never knew you had, and your strength will inspire others.

 

Q: What has been the most rewarding experience in your cancer journey?

A: Sharing our experiences with newly diagnosed cancer patients to help them understand there are options, and resources available to help them.

 

Q: What does SURVIVEiT®’s vision, “Creating a world free from the fear of cancer,” mean to you?

A: Changing a person’s initial reaction to the words, you have cancer, through encouragement, education, and empowerment.

Survivor Advisory Sandy & Ed Russ

Sandy & Ed Russ

Council

Survivor Advisory Caitlin Cahill

Caitlin Cahill 

Council

Q: If you had one minute to tell someone about yourself, what would you say?

A: I was born and raised in Brooklyn where I continue to live and work. I am a NYC public school teacher and love my job. I currently teach fifth graders who I believe may be some of the best people on the planet. I love being outside, being with friends and family, laughing, sharing stories and learning.

 

Q: Knowing what you know today, what are the first three things you would do after being diagnosed with cancer for the first time? Why?

A: Have a Cancer Coming Out Party. When I was first diagnosed, I decided to have a Cancer Coming Out Party and I would most definitely do that again. My husband and I texted our friends, told them the news briefly, and invited them over for champagne and cookies. I dreaded the idea of having to call people individually over an extended period of time, so having a big gathering and framing it in a positive way was what made me feel most comfortable. Avoid too much internet research. The internet is scary, misleading and overwhelming. If you can keep yourself from reading too much after your initial diagnosis, you may be able to save yourself from unnecessary stress.

Get a therapist (if you don't already have one). I believe that therapy is valuable even in the best of times, so it is essential in the difficult times. I found a therapist who had experience with cancer who really helped me sort through my feelings of frustration, anger, sadness and confusion. Your friends and family can help you sort through a lot of these feelings, but having an impartial professional listen to you is an incredible resource.

 

Q: What is the best way to support someone and their family who has just been diagnosed with cancer? 

A: Listen to them. Validate them. Feed them. (Like, literally, with food.) Bring them or send them fun little gifts. Try not to compare your experience with theirs, unless they are truly comparable experiences. (I can’t tell you the number of women who compared my experience of chemo to their pregnancies. Please don’t do that.) Don’t unload your worries on them--they are carrying enough worry on their own.

 

Q: Where do you find hope, inspiration and strength?

A: I have found hope, inspiration and strength in other survivors. Since my diagnosis, I have connected with many other people who have or have had cancer. It has been so powerful to speak with people who really understand what you are going through- the fear, the frustration, the physical discomfort, etc. I have also found hope, inspiration and strength in my students. Their love and support was palpable and motivating. While they could not fully understand what I was going through, their well-wishes and small acts of kindness were so fortifying.

 

Q: What do you want others to know about surviving cancer?

A: Surviving is wonderful. Surviving is a relief. Surviving is exactly what you and your loved ones were hoping for. But it is also difficult, and that is ok. When I finished treatment and was told that it had been successful, I expected to feel absolute joy and relief. The truth is I did not. I still felt fearful. What if it comes back? What if there is something there that they just can't see? How can I trust my body, knowing that my body has made mistakes in the past? Now that I am two years out from treatment, I feel more confident that I am ok, but those feelings still nag and that is just part of my life now, my new normal. I deal with that feeling by continuing therapy, continuing to speak openly with friends and family about my fears and by dutifully going to my appointments.

 

Q: What has been the most rewarding experience in your cancer journey?

A: I always feel a little resentful when people focus on the way that cancer has enriched their lives. It’s misleading. It plays into this narrative that we all are better for having had cancer. That’s not true. I would have much preferred to not have cancer at all, thank you very much.

But I do think that cancer has given me a new understanding of struggle and has helped me to have more compassion and empathy for others, and has fired my fight for equity. Before having cancer, I had never dealt with illness personally or within my immediate family. I also had never struggled to navigate opaque and predatory systems. I had never had to advocate for myself like I did when I was a cancer patient. Cancer helped me find my voice, it helped me to recognize my privilege and it inspired me to stand with the hundreds of millions of people in this country who fight daily for quality affordable healthcare.

 

Q: What does SURVIVEiT®’s vision, “Creating a world free from the fear of cancer,” mean to you?

A: To me, this means that a combination of community and knowledge can help drive away fear. Having people to support you, access to clear and vetted information, access to resources and quality care can make a very scary thing a little less scary. By providing the necessary information and resources, SURVIVEiT® removes some of the doubt and anxiety around treatment, and helps people focus on getting well.

Q: If you had one minute to tell someone about yourself, what would you say?

A: I am 44, married with 4 kids. I may have stage IV lung cancer, but that is only part of my identity - it does not define me! I am thankful for each day and try to live by what I know today.

 

Q: Knowing what you know today, what are the first three things you would do after being diagnosed with cancer for the first time? Why?

A: The most important thing to me was finding the right doctor to treat me; someone who treated the patient, not the disease. I always kept copious notes and all records. I also was able to communicate my feelings and needs with my husband, family and friends, but I had been on both sides of cancer and in so many way it’s much harder to be the loved one than the patient so I made sure that I gave them time to communicate their feelings and needs. Also, when people asked what they could do for me, I told them to help my husband and kids, who take the brunt of it all.

 

Q: What is the best way to support someone and their family who has just been diagnosed with cancer? 

A: Listen first. Every patient is different so it’s important to figure out what that individual patient and family, needs are; what they want to know/hear and how involved they want to be in their treatment. Try not to give medical advice, rather simply advise the patient/family and provide appropriate information and resources. Be hopeful!

 

Q: Where do you find hope, inspiration and strength?

A: You have no control over cancer physically - in your body, but you do control the mental game.

It takes time, and a lot of work, but once you control that, and cancer has to fit into YOUR life, living becomes easier.

 

Q: What do you want others to know about surviving cancer?

A: You have no control over cancer physically - in your body, but you do control the mental game.

It takes time, and a lot of work, but once you control that, and cancer has to fit into YOUR life, living becomes easier.

 

Q: What has been the most rewarding experience in your cancer journey?

A: My work with LUNGevity since 2001 gave me the honor of being part of the growth and success of the first organization in the country dedicated exclusively to lung cancer. Also, supporting other patients and knowing that makes a difference in their journey.

 

Q: What does SURVIVEiT®’s vision, “Creating a world free from the fear of cancer,” mean to you?

A: It means that no one has to go through this journey alone. It means that every patient has a readily accessible advocate. Without fear, patients have more control.

Survivor Advisory Jill Feldman

Jill Fedlman

Committee