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Contributors

I’ve always received impeccable care at my cancer center, but a recent experience made me feel like I was no longer a priority. 

Do You Ever Question Your Cancer Care?

Before being diagnosed with neuroendocrine cancer, I started to live a healthier life and took notice of some concerning symptoms. 

During the Pre-Cancer Days, My Intuition Pushed Me in the Right Direction

When I was first diagnosed with a stage 4 neuroendocrine tumor in my small intestine, I went through three stages of coping with my cancer: anger, planning and living life.

3 Stages of Coping With Cancer: There Are Better Days Ahead

The woman who raised me and I did not always see eye to eye. In fact, as two stubborn, opinionated characters we frequently bickered, challenged and exchanged choice words with one another. 

As I reflect on 25 years strong with Mom, here are some of my favorite words that we exchanged. We gave each other many cards over the past few years, one of which she had told me she looked for a long time searching for the right message to express her feelings. It reads:

"When you have a daughter who makes you proud, makes you laugh and, very often, makes your day ... you know what joy is. When you have a daughter who is a good person with a gracious heart and generous spirit ... you know what peace is. When you have a daughter whose beauty (inside and out) is matched only by her compassion for others ... you know what love is. Because I have you for my daughter, I know what it is to be truly blessed."

When I first read those words — as I read them now — I feel so close to my mom. Recently, I found a card with the words that expressed how I feel about her. I read this aloud to her on Christmas Day.

"Dear Mom, I'm so grateful for the way I was raised. You were never afraid to be my mother — to put your foot down, to teach me right from wrong, to make sure I did my best. You always let me know I had a mama who cared about me, who believed in me, who was there for me no matter what. Growing up with that kind of love and support made such a difference in my life; it made me who I am today."

My mother was never afraid to voice her opinion or be one to mince words, to put it lightly; but she was always pure in her intentions and true in her actions, and I feel so clearly, so humbly loved. As I go forward, I remember her strength and purity, her fierce sense of pride, her generous heart and sensitivity, her sense of humor (she once packed me a peanut-butter-jelly-and-ham sandwich because I refused to pick one of the two). 

Throughout her life and especially in her fight against lung cancer, Mom set us an example in unconditional devotion, taught our family valuable life lessons and never lost her indomitable spirit.

I know Mom is with us now and always. Goodbyes are only for those who love with their eyes, because for those who love with heart and soul there is no such thing as separation. I love you Mom, Happy New Year. Rest in peace and God bless.

For more news on cancer updates, research and education, don’t forget to

The narrative reflects on a complex yet deeply loving relationship between a daughter and her mother, characterized by mutual respect and understanding despite frequent disagreements. The daughter cherishes the heartfelt words exchanged through cards, highlighting the mother's pride, love, and unwavering support. The mother, who battled lung cancer, exemplified strength, devotion, and humor, leaving a lasting impact on her family. The daughter expresses gratitude for her upbringing and acknowledges the enduring connection with her mother, emphasizing that true love transcends physical separation.

Tumor

A Tribute to Mom

As a couple, we have been dealing with cancer for nearly 30 years. When Andrew was diagnosed with chronic lymphocytic leukemia (CLL) years ago, we had two small children, were running a growing patient education business, and we were terrified. At that time, we had no understanding of the difference between cancer was acute or chronic. We also had no knowledge of significant subtypes within a cancer diagnosis. There was a lot to learn. We needed to find information and communities to help us navigate our cancer journey.

Thanks to a computer-savvy neighbor (remember, this was 1996), we connected online with a long-time CLL survivor, "Granny Barb" Lackritz, who told us to "chill out!" and directed us to a major center of research and treatment that led Andrew to a phase 2 clinical trial and a 17-year remission.

We met other people in Seattle and online who were dealing with cancer too. As the years went by we came to understand the immense value of community — finding support among others facing the same fears, the same need to find answers, the same deep-seated longing for the best quality of life and more effective options for managing "chronic" cancer if a cure is not yet on the horizon.

Retreatment with a newer drug and now ongoing oral treatment for a second cancer allow us to live a full, active, and grateful life together.

Our big realization? Participating in research and helping provide funding is key to survival!

As cancer advocates and journalists, we also know that without ongoing, collaborative research, the hope for "What's Next?" would not be forthcoming. Now, with Andrew’s myelofibrosis progressing, what’s next could add years to his life.

We moved to San Diego almost 10 years ago to be close to the researchers and treatment experts for the two blood cancers we are dealing with. hat is a blessing. Then we found out that locally based Curebound, founded by a cancer survivor and his family, focuses on raising money to fund early-stage cancer research and it requires collaboration on research across academic institutions. This is where the pipeline of cancer treatment options begins and has been the start of a hopeful path for us.

With all the research advances, early studies can make a difference for patients across cancer subtypes. One recent example is a research team that was awarded a $200,000 Curebound grant at the San Diego School of Medicine, in California, in 2021. Led by Doctors. J. Silvio Gutkind, Joseph Califano, and Ezra Cohen, the goal was to investigate if initiating immunotherapy treatments before surgery may offer a next-generation treatment for head and neck cancer patients. Three years later, the research team has advanced the understanding of immunotherapy resistance, has been published in Cancer Cell and Nature Communications, received an additional $9.6 million in follow-on funding from the National Institutes of Health,and launched a multi-location clinical trial. Moreover, their research could lead to important discoveries about immunotherapy that could have broad impact on treatments for other types of cancers. All because a community came together and donated funds for cancer research.

We also appreciate that Curebound — the organization and its growing base of support — raises awareness within the general public of the need for funding early-stage cancer research. We have participated in major fundraising events and educational programs open to the public that are engaging not just for cancer patients, but for other communities touched by cancer who want to help.

Along with our devotion to the work Curebound does, we are working with college students who want to enter health-related fields by lecturing about ways to reach cancer communities through various communication channels and techniques. We emphasize the need for education about the importance of clinical trial participation and support of research. In addition, we sit on a variety of committees — driven by California State initiatives, pharmaceutical companies and regional medical research programs to bring the patient and care partner voices to the efforts.

For anyone dealing with a cancer diagnosis, we recommend taking a deep breath, learning more about your specific type of cancer — today there are fewer types of cancer where medicine has not yet figured out how to stall progression — and find your community to live your best life.

Having “chilled out!” and survived since that scary day in 1996 when Andrew was diagnosed, the communities we’ve found have become a wonderful channel for us to make a difference for others and certainly for ourselves.

Navigating a cancer diagnosis for nearly three decades, the couple emphasizes the importance of community, research, and education in managing chronic cancer. Their journey began with a CLL diagnosis, leading to a 17-year remission through a clinical trial. They highlight the role of organizations like Curebound in funding early-stage research, which has led to significant advancements in cancer treatment. Engaging in advocacy, they stress the need for ongoing research and community support, while also educating future healthcare professionals on the importance of clinical trials and patient involvement.

After nearly 30 years with cancer — community, research and education have helped us find hope, strength and purpose in the face of chronic blood cancers.

“Chillin’ Out” and Finding Our Cancer Community

“Is it OK if I take care of you today?”

That was the question Robin asked, soon after my arrival and check-in at the Infusion Center for a routine blood transfusion. Pleasantly surprised to see her in an unexpected location, and amused by the question, I readily agreed! After all, I knew Robin quite well, as she was my primary nurse while hospitalized for a bone marrow transplant six months earlier. I soon learned she had recently transferred from the Bone Marrow Transplant (BMT) program to the Infusion Center.

Over the next few hours, as Robin administered expert nursing care, we caught up on each other’s lives and celebrated my post-transplant health improvement. It was a nice way to spend a morning; hospital visits are rarely (if ever!) better than this one.

Robin gained my unequivocal trust at our very first encounter during my hospital stay. Disguised as a relaxed and friendly conversation, she interviewed me to better understand my history as a lymphoma patient, the precise circumstances of the ongoing BMT process, and perhaps most importantly, my concerns and fears. Though other healthcare providers were coming and going, she made no attempt to prevent them from hearing the conversation; that is, until the questions became more personal. At that point, Robin inspected my IV access port, allowing her to continue the conversation with one-on-one privacy. It was skillfully done with the utmost calm, gentleness, and sincerity, and gave me space to answer questions with complete honesty.

Over the next two weeks, at every encounter, trust in Robin’s abilities as a skilled nurse, as well as an empathetic and compassionate human being, was reinforced. She became a confidant to me and my wife, Sue, patiently answering our questions and helping us navigate a difficult and often frightening process.

A simple gesture, though one that provided a great deal of tranquility, was Robin’s practice of telling me her schedule at the beginning of each work shift. As she regularly worked 12-hour days, it was comforting to know the same person would care for me for an extended period. This is not to imply concerns for those days and times when others were on duty, as I received consistently high-quality and professional care from everyone in the transplant unit: nurses, nurse aides, doctors, NPs, and PAs, as well as myriad others like custodians and the cafeteria staff who delivered my meals. Rather, it was the bond of trust, through the repetition of skilled nursing care and many, many conversations, that made Robin stand out among an amazing group of caregivers.

At my company, we pride ourselves in “taking care of people”. The expectation for each employee is to give full attention to the needs of our clients and do the best job possible while at work. For myself, as a project manager, this means producing construction documents that reflect our clients’ physical space requirements, and then working with contractors to get designs built accurately and within budget. Analogous to Robin’s work as a nurse, it focuses effort on the needs of others.

A profound difference between my work as an architectural consultant and nursing care at UW Health, however, is the personal and very “hands-on” aspect of nursing. This is particularly true for those of us requiring extended care for difficult and sometimes life-threatening conditions. The care and compassion displayed by Robin was truly extraordinary and will always be remembered. The DAISY Award sculpture entitled “A Healer’s Touch” is apropos for her attention to detail. As Robin passed the foot of my bed at the end of each visit, she would often give my big toe a gentle wiggle, as if saying “Don’t worry, Jeff, I have you covered – you’re safe”.

I can think of no one who better exemplifies the ideals of “taking care of people” and the mission of The DAISY Foundation.

The narrative highlights the exceptional care provided by a nurse named Robin during a patient's bone marrow transplant and subsequent visits to the Infusion Center. Robin's empathetic and skilled approach fostered a strong bond of trust with the patient and his wife, offering comfort and reassurance throughout the treatment process. Her dedication to patient care, characterized by personal attention and compassion, exemplifies the ideals of "taking care of people" and aligns with the mission of The DAISY Foundation, which honors extraordinary nursing professionals.

NOINDEX

NOFOLLOW

A Healer’s Touch During My Experience With Cancer Care

I had a charmed breast cancer experience.

That’s a strange sentence to write — and an even stranger one to believe. But from diagnosis to treatment, everything that could go right for me, did. I was diagnosed with triple-negative breast cancer two months into the pandemic shutdown, at the age of 44. I had immediate access to world-class treatment, a phenomenal care team, a supportive partner and comprehensive insurance. Even my emotional and mental health needs were supported. Twenty years ago, this would’ve been a death sentence.

I just entered my fifth year of being NED (no evidence of disease) with gratitude — and questions.

What made the difference for me? Why did I survive when the statistics for Black women with breast cancer are so grim? We’re less likely to be diagnosed, more likely to die from it, more likely to be dismissed, diagnosed later, or offered fewer options. Was my outcome shaped by where I live? My marital status? My employer or education? My ability to navigate systems fluently? The truth is, it’s all of it. It’s intersectional. And that’s why I feel compelled to speak up. Because not everyone can. Not everyone feels safe to do so.

Cancer stripped me down to the studs. With a husband, two pre-teens, an elderly cat, and a global pandemic to contend with, I had no choice but to re-examine my life. I stopped saying yes when I meant no. I let go of friendships that no longer served me. I quit shouldering inherited expectations from family, religion or society, especially those placed on Black women.

In the middle of chemo, I returned to writing, something I’d abandoned long ago. Mortality made me brave. I poured all my fear, hope, and grief into a story of a Black breast cancer survivor finding her way forward—with agency and unapologetic joy. That story became the first of many. I didn't know it at the time, but I was "time traveling" — a concept from the Kids at Hope framework — imagining a victorious future to guide my present.

I made a list of all the things I’d put off. Dreams I’d buried. The list got so long, I split it into three parts: things I could do right after treatment, things that needed planning, and pure magic-wand dreams. At the top? Fiji. A paradise I didn’t dare dream of as a kid in inner-city Philadelphia.

 is the Japanese art of repairing broken pottery with gold or other precious metals, honoring the cracks instead of hiding them. That’s how I feel about cancer. It cracked me wide open, but it didn’t break me. It gave me strength, a voice I’d been quieting for too long, and a vision for what my life could become.

Even during treatment, I found myself advocating for others: What about patients who don’t read English? Who can’t use this iPad check-in system? These weren’t combative questions. They were the right ones, and I had the privilege to ask them. So I did. Because not everyone can. Not everyone feels safe to.

I was lucky, but luck shouldn’t be the deciding factor in who lives and who doesn’t. That’s why I keep speaking up.

Cancer changes everything — your body, mind, relationships, energy, even your tolerance for nonsense. Some things you loved become unbearable. Things you thought could wait suddenly feel urgent. The old version of me no longer fit. But the new me, the one rebuilt with scar tissue, stubborn hope, and gold in the cracks, doesn’t ask for permission to dream.

That courage didn’t vanish when treatment ended—it multiplied.

Those dreams I’d shoved in a mental closet? They were still there. I greeted them like old friends. Then I got to work. I wrote one book. Then another. Then another. And eventually, I saw my pen name on a bestseller list.

And I got to Fiji. That once-fanciful dream—the very top of the magic wand list—became real. I stood on the shore, overcome by the sound of the ocean and the weight of my own survival. I wept. Not because I was sad, but because I was 

. Flourishing. That moment, like so many others, was proof that cancer hadn’t broken me. It had cracked me open wide enough to let my true-life flood in.

A breast cancer survivor reflects on her journey, highlighting the intersectional factors that contributed to her positive outcome, such as access to quality care and support systems. She emphasizes the disparities faced by Black women in breast cancer diagnosis and treatment. The experience led her to reevaluate her life, pursue her passions, and advocate for others. She likens her transformation to the Japanese art of Kintsugi, finding strength and beauty in her vulnerabilities. Her story underscores the importance of addressing systemic inequities in healthcare.

Breast cancer cracked me open but didn’t break me — it gave me voice, purpose and courage to dream boldly, live fully and speak up for those who can’t.

Cracked, Not Broken: Life After Breast Cancer

If I could go back and speak to myself in the early days of my battle with advanced, stage 4 metastatic renal cell carcinoma, my advice would be: “You will find strength in places you never imagined, joy in moments you once overlooked and love coming from people you never expected to be important in your life.”

When I was first diagnosed, the fear was overwhelming. The prognosis felt like a ticking time bomb, and I was consumed by so many questions: 

What will treatment be like? How much time do I have? Am I going to die?

What does this all mean? Will I be here to walk any of my daughters down the aisle? Will I see my grandchildren?

Over the years, I have learned that although cancer may reshape your path, it certainly does not define your spirit.

Early on after my diagnosis, I was fixated on the future and things I could not control — survival statistics, treatment plans, and what-ifs. However, as time passed, I began to appreciate what was right in front of me and focus on the things I could control. One of the most profound lessons I learned was the power of living in the present.

My older two daughters call it “Cancer Dad

 They claim that since my diagnosis, I parent differently. They say the two younger girls get away with a lot more than they did. They claim I am less worried about the things I was worried about when they were the same age and that my view on life is different. In some ways they say that cancer has forced me to be more mellow and less worried about being in control all the time.

 perspective has changed, and I have learned to find gratitude in the present, appreciating the laughter, love, and even the challenges that come with each day. Cancer has taught me how to live in the present.

My cancer odyssey has taught me that while I cannot control the progression of my disease, I can choose how I respond to it. Finding joy with my family has brought me strength and renewed appreciation for life. We have seen firsthand that life isn’t guaranteed so we focus on making the best of what we have today. We call it “Stravin Strong”; we don’t sit around and ask why us, we keep our eyes on the road ahead and live in the moment

Over the last ten years, I have also discovered the importance of community. Connecting with others who understand this cancer odyssey has been invaluable. Whether helping other fellow patients through the early days of a diagnosis, sharing thoughts on treatment options in the Smart Patients online forum or having conversations with fellow patient advocates; sharing experiences and hearing others' stories has provided comfort and perspective. Sometimes I walk away saying that I am blessed despite having cancer and that things could certainly be worse for sure. The kidney cancer community is one big family, and you can always find someone to lean on. 

I have also learned that family Is not always about blood. Family is about who is willing to hold your hand when you need it the most

 My experience with my care team at Dana-Farber Cancer Institute has shown me what that really means. Ten years ago if you had told me that I would find love in my care team, I would have told you that you were crazy. I see every day how love is at the center of the amazing care they provide. Without that love, I am not here today.

In closing, if I could offer advice to my past self — or anyone facing a similar diagnosis with advanced renal cell cancer — it would be this:

 Find joy in the little things and cherish those moments.

 Lean on family and loved ones, join support groups like Smart Patients, and don’t be afraid to share your story.

 Advancements in kidney cancer treatments are ongoing; things are changing by the day, being proactive can make a difference.

 There will be good days and tough days. It's okay to have tough days. Stay in the middle. Don’t let the highs get too high or the lows get too low. Allow yourself time for grace and compassion.

A cancer odyssey is undeniably challenging, but it's also filled with opportunities for growth, connection, and profound appreciation for life. Remember you are resilient, and you certainly are not alone. You have cancer. Cancer doesn’t have you.

For more news on cancer updates, research and education, don’t forget to 

subscribe to CURE®’s newsletters here.

A personal journey with advanced stage 4 metastatic renal cell carcinoma reveals the transformative power of living in the present, finding strength in unexpected places, and the importance of community and connection. Embracing the present moment, seeking support from loved ones and support groups, and staying informed about treatment advancements are crucial. The experience underscores the significance of gratitude, resilience, and the realization that cancer does not define one's spirit. The narrative highlights the profound impact of love and support from both family and healthcare providers.

Living with stage 4 kidney cancer has taught me to embrace the present, cherish connection and find gratitude each day in unexpected places.

Amy Nutial

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