I’m going to pose a question now to everyone. How can the medical team improve the care of patients with brain metastases? Perhaps we can start with having Ivy and Katie speak to that.

Patients need information. That’s probably the most important thing. When you’re diagnosed, everything is thrown at you. I think patients need to understand what brain metastasis means, how that can impact their lives, if they’re asymptomatic versus symptomatic, what the options are for treatment, both short term and possibly long term. That needs to be laid out to people in an easily understandable way up front. I also think patients need to understand what the ongoing management is going to be for brain metastases, how often they’ll be scanned, if you have certain symptoms, when you should bring that up and maybe recommend moving a scan up earlier. But basically, what it comes down to is increased information.

I agree. We’ll have Ralph, after Katie has a chance to speak, but that’s exactly what the ABTA [American Brain Tumor Association] survey results showed us, too. But Katie, do you want to add to that?

I agree with everything Ivy said, although I have already said I’m the patient who doesn’t want to hear all the worst-case scenarios. I don’t know how I would have responded if a doctor said, “Listen, I need you to be looking for these things,” because then I would be like, “Oh my god, I think that symptom happened to me last week, I think I have a brain tumor, I think you need to scan me right now.” But I think I’ve gotten a little bit better now that I’m seasoned at dealing with this.

Another thing that was shocking to me was, I’m not claustrophobic, I didn’t think I was, until I got a brain scan. That’s a very different scan. If you think, “Oh, I’ve done scans, I know what I’m doing,” and suddenly you’re going headfirst down a very narrow tube with a cage on your head, it’s terrifying. To this day, if I ever hear of someone having to go in for a brain scan, I’m always very careful with how I present information to other patients. But I always do say, “That one is a little harder for me, and I take a Valium for it.” I call that a cancer perquisite. But Nick has to drive me to those scans now because they still, to this day, I get a lot of anxiety around that particular scan.

 I think your experience is not a rarity, I think other patients have had similar experiences. Ralph, do you want to add to that?

Sure. I think you all know this very well, but patients and caregivers trust you and respect you. When you take the time to sit down and give them clinical trial treatment options, they listen, they absorb it. But it’s important that you also involve your team, your nurses, and your social workers, so that when they leave the office, they trust you, but sometimes they don’t fully understand everything that you have said. Having your support staff following up, working with them on clinical trials is important. Second, the survey shows how much they lean on, and want to know more about, organizations like the ABTA. You can trust us to work with them where they are and then afterward. People like Nick, who is a phenomenal caregiver, we can talk to him about whether he’s interested in being a mentor to others after he feels like Katie is at a place where he can give time to other caregivers.

 I completely agree, Ralph. Dr. Gondi, did you want to add to, how can we as a field improve the care of a patient with brain metastases?

As I listen to Ivy, Katie and Nick speak, it reminded me, at least in my clinical experience, that when systemic cancer goes to the brain, there are a lot of emotions, understandably, there’s a lot of fear, there’s a lot of confusion, consternation. And it’s not just on the patient’s perspective, but even some medical oncologists. What I’ve appreciated is that sometimes medical oncologists, as a brain tumor specialist, and I’m sure Dr. Brastianos, you probably do the same, I just say, “You know what, I’ll take care of the brain. Everything above the neck, I’m going to watch and keep an eye on, and everything below the neck, your systemic oncologist can keep an eye on it, and we’ll do it together.” That collaboration becomes useful. Just during this Zoom call, I’ve gotten a couple of texts from medical oncologists about patients we have, and I think that gives patients and their providers some sense of calm and comfort, that everything is taken care of up here, that we’re OK. If I have a headache, call that doctor who specializes in brain stuff and let him know, so that they can address it. I do think that there is tremendous opportunity to help and augment the care of patients and their providers, especially when we’re talking about the brain.

Of the two concepts I tried to cover, one is that the neurological team, whether they are a surgeon, radiation oncologist, or whatever, they have the knowledge and expertise pertaining to the brain and to the central nervous system. That team is bringing that expertise to help the medical oncologist treat the patient in a complete way. The second concept is that it’s a complicated world, and one specialist within the neuro field cannot handle all the problems of brain metastasis. It does require a whole team of a surgeon, oncologist, radiation, radiologist, and so on and so forth. Bringing all these together in the brain metastasis concept is a great advantage for patients.

 I completely agree. On that note, we can be providing more support to caregivers. Nick, you already alluded to that earlier, but tell us more about how we can help caregivers.

This morning was a good example, my first question to Kate was, “How are you doing?” I think that’s a nice question also to ask a caregiver, how are they doing. I think I would like to see more proactive support offered, and if you do need support, here are avenues you can use to find support and information. Then what do you need as well as a caregiver, what can we do to support you, because we’re here to help the patient. The more that we can be supported to be in a better place to help the patient, the better that could be for us. Even Ivy talked about how she was the patient, she looked after the kids. I’m sure while her husband was working, that was a huge impact on him, as much as there was when I had to go to Pittsburgh, change my schedule, and be there to support Katie in the hospital every day. It would be great for a little more attention to the caregiver, to make sure things are well there, because we’re here to help the patient, and we’re part of the overall story and on the journey together.

That’s so important, Nick, thanks for saying that. Again, thank you to Katie, Nick and Ivy for sharing these deeply personal journeys. We’re so inspired by your stories. Thank you, and we hope that you’ll continue to do well and respond to therapies. I think we’ve reached time. Thank you to everyone who participated in today’s 

® program. I want to thank Ivy and Katie for sharing your story, and my colleagues, Vinai Gondi, Ray Sawaya, Manmeet Ahluwalia, and of course, Ralph DeVitto, for this incredible discussion. To our viewing audience, we hope you found this presentation to be useful and we’ve provided you with practical information that you can discuss with your health care provider. Thank you so much, everyone.

Improving Outcomes for Patients With Brain Metastases

Vinai Gondi, MD, Northwestern Medicine Cancer Center

Follicular Lymphoma Risk Factors, Diagnosis, Prognosis

Progression in R/R Follicular B-Cell Non-Hodgkin Lymphoma

Novel Agents for R/R Follicular Lymphoma Management

Managing Quality of Life in R/R Follicular Lymphoma

The Future of Follicular Lymphoma Management

Understanding Relapsed/Refractory Follicular Lymphoma

Ajay Gopal, MD, Seattle Cancer Care Alliance

Several studies have identified an increased risk of colorectal cancer (CRC) among those suffering from a chronic condition such as Crohn’s disease, diabetes, or obesity. Interestingly, this association is particularly evident among millennials, meaning those who were in the 22-37 age group between 2014 and 2018. This is definitely an interesting trend that the CRC research community needs to continue investigating.

 found that those who are obese are 30% more likely to develop CRC than those who are not. There are several reasons for this: obese individuals tend to have inflammation caused by visceral fat, which can cause damage to the body and increase the risk of cancer. This inflammation can also cause insulin resistance, such that the body doesn’t respond properly to insulin and subsequently produces more insulin to offset the loss from the resistance. Increased insulin levels can also boost the availability of estrogen, which can lead to increased cell production and tumor growth.

Individuals with inflammatory conditions such as Crohn’s disease or ulcerative colitis are at an increased risk due to inflammation of the colon, particularly if they have suffered from the disease for several years.

Mary Grigsby is an intern with the Colon Cancer Foundation.

Several studies have identified an increased risk of colorectal cancer (CRC) among those suffering from a chronic condition such as Crohn’s disease, diabetes, or obesity. Interestingly, this association is particularly evident among millennials, meaning those who were in the 22-37 age group between 2014 and 2018. 

Chronic Conditions Can Increase the Risk of Colorectal Cancer

Mary Grigsby

Before being diagnosed with colorectal cancer, I was experiencing symptoms, but I did not trust my body. Some of the doctors I saw did not always trust me and what I was saying, and it took me seven months to get diagnosed after being misdiagnosed several times with hemorrhoids.

It is essential to hear and connect with your body and trust it when something feels off, regardless of what doctors may say, and especially if they’re not taking you seriously. Fiercely advocate for yourself.

I was diagnosed with stage 2a colorectal cancer in July 2015 and almost lost my life. Then, I received a lifesaving ostomy in November 2015 that helped me redefine beauty and gain confidence.

My nurse suggested I name my ostomy because it would make noises, and the name would allow me to place blame. “Toodles” is what I decided. Before I knew it, my Toodles had opened up the world of body positivity for me.

Before my diagnosis, I was a model. The modeling industry is body-conscious and strives for perfection. But no one is perfect. Over time, I saw people on social media living a full life with their ostomies and realized I could do that too. I started traveling and reclaiming my life.

I have a vertical scar that runs down my abdomen, a port scar, my ostomy and scars from having my children. My body has evolved, but I have too. I am thankful for my body. I am grateful for every scar because every scar tells a story of my strength. The scars are what make me beautiful.

If I have a day where I am not feeling positive, I find one thing on my body I feel confident about and embrace it.

I also created an Instagram account to reclaim my femininity with an ostomy. I started talking about my experience, and the page grew organically. I have been able to advocate internationally and domestically. It's been such a blessing.

When you are diagnosed with cancer, being an advocate is not at the forefront of your mind, as you are just trying to survive. After I made it through the initial part of my diagnosis, I realized that so many people supported me, and I created a community around me. I learned how important the community is to those in the fight. Through social media, 

I found Fight Colorectal Cancer and their resources

. I wish I had found the resources when I was diagnosed so I could better advocate for myself. Now, I make sure to share the resources.

I was recently declared five years cancer free and celebrated my 53rd birthday. That was a great birthday present! Hitting my five-year mark was powerful because every year as a survivor you think, “Is this the year my cancer will come back?” After hearing the news, I paused and realized I got five more years with my children and my amazing husband of 22 years.

When I talk about my diagnosis, I often say “we” were diagnosed with cancer. My husband and children went through it with me. We were all in fight or flight; we all experienced trauma of some sort; and we all went to therapy together. This experience bonded us as a family so deeply. My family and I have become enriched by this experience.

From Fight Colorectal Cancer: Knowing the symptoms of colorectal cancer and understanding your risks of developing it may prevent this cancer from happening to you or help get a diagnosis as early as possible. Learn more at 

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

After being diagnosed with colorectal cancer, my ostomy — which I named Toodles — opened up a world of body positivity for me.

How Naming My Lifesaving Ostomy Helped Me Gain Confidence and Find Body Positivity

Kimberly Holiday-Coleman

 We’ve talked a lot about how this landscape has evolved, with all the new treatment options we have. There’s a lot coming in the pipeline too. CLL [chronic lymphocytic leukemia] is still considered an incurable disease, meaning that even if patients get into remission—maybe they’re on time-limited treatment and aren’t on any therapy for a while, or they’re on watch-and-wait—they’re advised that they’ll need to follow up with us forever. That fear of the CLL rearing up again and needing treatment is always in the background for our patients.

The field is shifting toward, hopefully, finding a way to cure patients with CLL. We’re not there, but a lot of things in development might help us do that. Some things include therapies that are being developed across other B-cell cancers. In CLL we follow something called minimal residual disease, or MRD, and that can be checked in a variety of ways. At a deep level, it looks to see if every single cell is gone. That doesn’t usually happen on BTK [Bruton tyrosine kinase] inhibitors; that’s why they’re given long term. You usually have some small detectable disease, and it’s chronic. One of the ideas—and we’ve participated in clinical trials looking at this—is adding something to someone who’s in a deep remission to try to eradicate those few cells remaining and allow people to come off treatment and hopefully not need treatment again.

One thing that’s being explored in that setting is different immune treatments, so chimeric antigen receptor T-cell therapy is being developed in CLL. That’s where you retrain the immune system to recognize the cancer cells. Bispecific T-cell engagers are another group of drugs that people might hear about in blood cancer in general. It grabs the immune system and the cancer cell, brings them together, and helps the immune system destroy the cancer cell. It sounds like science fiction when I explain it, but it’s exciting that we can be a part of it at our center and many others and give patients hope. I’ll talk to you about treatment now, but we might not need treatment for a few years. If that’s the case, I probably don’t have what I will treat you with in 2 or 3 years. It’s changing quickly. There are a lot of reasons for our patients to be incredibly hopeful. It’s a dramatically different landscape from even a few years ago, and I expect that trend to keep going for the rest of our careers.

We’ve talked about a lot today. Hoshi, any parting words of wisdom that might be helpful for patients?

 As you’ve described, there are a lot of changes going on in the CLL world with treatment. We’re far from the chemotherapy regimen that we used to use. We’re getting in the realm of patients going home, taking pills, and managing their disease like diabetes or hypertension, which is very promising. It’s a very exciting time. When our patients are on watch-and-wait, they often say, “It’s always watch and worry.” I hope this discussion will give our patients more comfort and get them excited about their future.

 Exactly. There’s no reason to treat them if they don’t have symptoms. That doesn’t help the long-term outcome. The longer one can wait, the more likely they are to shift into a new era, where we might have even more effective and better-tolerated drugs. That’s some great wisdom. I like the mention of “watch and worry” because that comes up commonly.

Thank you once again, Hoshi Iida, for this insightful discussion. To our viewing audience, thank you for joining us. We hope you found this session to be useful and valuable in your treatment with chronic lymphocytic leukemia.

Lori A. Leslie, MD, and Hoshiyuki Iida, APN, offer closing thoughts on the future treatment landscape of chronic lymphocytic leukemia.

Future Directions in CLL Treatment

Hoshiyuki Iida, APN

I know this is a tough subject. We love our children and grandchildren and want to protect them from everything out there that will make them hurt. And if you have been diagnosed with cancer and have young children or grandchildren, the worry of when and how to tell them about this scary illness is probably at the top of a long list of your AD (after diagnosis) concerns.

I recently put a resource together for newly diagnosed patients, which includes several videos, where I briefly broach the topic of telling family about cancer. The timing is uniquely personal to each new cancer patient — but the sooner the better, and don’t keep putting it off. Good advice, yes, but also scanty on the “how” part, especially as it applies to telling the youngsters in the family.

The “how” part, like the timing part, is also uniquely personal, and is different for each of you as they were the differences in each of our BC (before cancer) family lives. There are several online sources that offer advice on how to tell your kids that you have cancer. And they are worth looking at, to see if any relate well to your family circumstances, and resonate with you, personally, as a parent.

There are four things I would emphasize about what you are seeing online:

First, this is not a “one-and-done” task. Some advice you may find may suggest you make elaborate plans of the right setting, the right time, the right set of words, and map out what you will say when your kids ask questions. Sounds to me as though you might interpret that to mean you need to take days, maybe weeks or months, to prepare for that first conversation. Don’t fall for that or use it as an excuse to postpone. Your kids, no matter how young, know something is wrong. So, don’t keep putting it off until you work out the perfect speech. It is merely the first conversation, and probably not nearly the most important of those to come, in terms of helping your kids or grandkids come to grips with the concepts of cancer, illness, treatment, and separations due to hospitalizations — and what all that is going to mean to them.

And, it is not a “solo act” kind of task. Again, some of the sites tell you to pick the person who will tell your kids. I say it doesn’t matter who, or how many people, have these initial conversations. I think it is much more important to get some basic facts said – like getting the word “cancer” out on the table, because they are overhearing the word, and are sensing everyone’s fear and worry; and like reassuring them that cancer isn’t something they can “catch” from your hugs and kisses; and repeating as many times as possible that no matter what else is happening or is going to happen, they are loved and will continue to be well cared for. Certainly, the parent or grandparent who was diagnosed with cancer should play a major part in that first discussion with each of the children, but you don’t need to be the only one doing this.Set yourself, and them, up with a path going forward that encourages them to share their concerns with other adults on your “home team.” Kids and grandkids need to know that they can come to several people among your family and friends and clergy when (not if) they have questions and worries. This way, when both you and your spouse or primary support person are too distracted with the everyday burdens of living with cancer – your children know that there is someone else with whom they can share their feelings and concerns.

And, unless you have an only child, know that for each of your children, this series of conversations and intercommunications is individual to each one. Children of different ages and emotional maturity are going to require very different conversations. And they will have much different needs, going forward. And, if you can, identify for each of your kids the persons in their lives who are good “go-to” family members or adult friends, with whom each child seems to most easily and comfortably interact. Then work out with them a plan to support and mentor that child. Finally, if your oldest or most mature-acting child seems to be someone to whom the younger child or children go to when they have concerns or feelings they want to share, keep an eye out for that child to offer support when he or she gets overwhelmed.

And last but certainly not least, my advice to you parents is this: Your cancer will undoubtedly impact the lives of your children. For them, coping with cancer of a parent can produce both developmental and behavioral issues. Look around, now, for support services for your kids in your community. Some communities’ cancer support services even include specialized programs, support groups, even summer camps for kids from ages 6 and up. If your community is one of those, it is worthwhile to get your kids into these programs. It provides a social bonding of kids with the same worries and fears and frustrations, and they do truly benefit over the months and years as part of that peer group. If your community does not offer such programs, check your insurance benefits to see if there are mental health services for counseling your kids, including support groups and family counseling.

In addition to the advice offered online, some cancer centers offer psychosocial services that include help with how to handle the delicate first conversations when you share with your young children the news of your cancer diagnosis.

And there are a few children’s books that focus on stories about a parent or grandparent who has cancer, written from the viewpoint of a younger child, tween or teen. If you decide to get one of these books, make sure that you read them first, yourself, to see if they make sense and apply to your family circumstances.

There is one set of books for younger kids ages 2-6 (one for a sick parent and another for a sick grandparent) written by Kathleen McCue, called “Someone I Love is Sick.” It is (like My Notebook) published as a loose-leaf binder, with a plastic pocket to put the pages that don’t “match” your family.You can read to your children your hand-selected pages of the book. Maybe in a few months or a year, you may add and subtract pages, as appropriate.

All the above, is stuff that I have pieced together from authorities and resources I have researched.

Now, I have my own two cents to add: Please, look for advice and resources that do not further complicate or adversely affect your own efforts to cope, but rather offers a path for you to do the best for your kids but still focus on all the aspects of you and your whole family living with cancer. I am asking you, and the other adult members of your home team, to remember that there is no right or wrong way to do this. Some days, you will think you really got it right and some days, not so much.But it serves no one in the family well, if you are not only sick and fighting your disease, but also making yourself sicker worrying that your kids are being neglected while you are on this journey.

If you have any questions or comments or would like to share your own stories, please feel free to contact me at barbara@newcancerpatient.org

Please, look for advice and resources that do not further complicate or adversely affect your own efforts to cope, but rather offers a path for you to do the best for your kids but still focus on all the aspects of you and your whole family living with cancer.

How to Have the Cancer Talk with Children

Barbara Jaffe

The First Signs of Leukemia

Chronic Lymphocytic Leukemia Diagnostic Process

CLL Treatment Decision Factors

First-Hand Experience with CD20 Monoclonal Antibody Therapy

CD20 Monoclonal Antibody Dose Adjustment and MRD

The Patient's Role in Deciding a Treatment

Achieving Minimum Residual Disease Remission

Chronic Lymphocytic Leukemia Support Network

Advice for Patient's and Caregivers

Lifestyle Changes After Being Diagnosed with CLL

Treating With Venetoclax for Chronic Lymphocytic Leukemia: Samantha’s Story

Nitin Jain, MD, MD Anderson Cancer Center

I’ve never had a reason to examine mortality, not mine or others, it was just there. Our parents have long since passed, grieving surfaced briefly, however, memories last a lifetime.

The love of my life came to the forefront late in life. A love unconditional, someone who always said the right thing, someone who could do no wrong in my eyes. Curious friends wondered to themselves about the longevity of our relationship beyond the basic concept of Men Are From Mars, Women Are From Venus. I maintain, 

We shared nothing in common, however, we shared the magnetism of each other’s company

. For sure she is an acquired taste, this is a woman who never won a science award or literary prize but she won my heart. What couple could claim zero competition in their relationships or seldom engage in the rare argument over competing points of view? But, let the subject of what color to paint the kitchen and I will abstain from the good fight in favor of keeping the peace, the sensibility to live to fight another day.

So, six years almost to the month, the love of my life came to me one day out of the blue to find me in my sanctuary garage announcing; “I just coughed up blood!” Those five words changed the course of our lives forever. How can you not react by scooping her up and rushing off to the hospital just to hear the bad news from a staff doctor, “… I found a mass.” Future plans vanish, our living space forever bound by the proximity of medical offices and ill-fitting gowns. Even that young doctor, a disinterested party, gets misty eyed with her own news. She shared our emotional state of mortality, a rare condition for a doctor who from a distance should be numb to life and death situations. Maybe a lesson can be learned here? To learn and prosper from our successes and yet learn from experiences that are less than successful and be human in the process. Keeping the hope through the endless medical appointments punctuated by the never-ending lines at the pharmacy day and night even though we both know what the doctor will tell us. I guess it’s all part of unconditional love, a journey to be clear, bound by the glue of a partnership that was supposed to last until the end of time.

Our particular medical institution prides itself of its compassionate culture, an unwavering affinity for everyone. Her Oncologist’s compassions abound, book ended by loving hugs all around on our very last visit with his news about her recent biopsy: “I’m sorry, there is nothing more I can do.” We closed our chapter of notes and records in a binder with its collection of hospital ER security badges as its cover, a cover to serve as the prologue from saving her life to the fight for the challenge of creating enduring comfort beginning with resurrecting her bucket list.

My sister, more spiritual than I, quoted scripture in a letter: 

I have fought the good fight, I have finished the race, I have kept the faith.

 2Tim. 4:7. Wow, so perfect. In these past six years, life goes on, we still vote, pay bills and look forward to shoveling snow, how wrong is that? Steering clear of the future by prolonging the present? In memorializing the best of her favorite chosen pastime, drinking iced coffee even if it’s thirty-two degrees outside, I will keep the tradition alive.

My spouse and I should be preparing for a Friday night date night discussing menus, reminiscing about fixing brunch for the in laws and the cat jumping from the floor into the frying pan of bacon, not sitting at the kitchen table discussing the wording on her end-of-life documents. Six years… half of the time we’ve been married.

Hospice. A cringe-worthy word bound by urban legend. Though only ink on paper, the eye-never-the less involuntarily jumps over the word because of its harsh sentence. The unspoken reality known in the medical field but never verbalized is a curse of fitful sleep with breakthrough pain. Her Hospice nurse, the enemy of her cruel disease, visits regularly armed with a pen, dismissing meds that are now irreverent. However, her nurse is a warrior in disguise, a hero of heroes with bulletproof resolve and an arsenal of chemical weapons to combat the enemy. We both know that it will be a good fight, a brave battle to keep pain and suffering at bay, but who will win?

Suddenly, the race of mental verses physical longevity is at stake. Tasks we never think about suddenly become Olympic events, to-do notes illegible or without purpose.

In the meantime, my mission… comfort her spirit and ignore her changing persona.

The Good Fight

Jeff Jensen

On October 16th, 2023, my husband Dan was diagnosed with pancreatic cancer. At that moment, life became blurry, and all I could hear was a whooshing in my ears. I have fuzzy memories of follow-up medical appointments and phone calls to loved ones for what felt like years, though it was only a couple days, and I was beginning to believe that I would be on my own to figure out the next steps. It was then that I heard the voice of Jill May, B.S.N., RN, OCN.

She was on the phone with my husband as I returned home from picking up our daughter, and just the sound of her voice triggered my tears. She heard my pain and immediately offered me grace and kindness. She knew that though Dan was in for the battle of his life, his path would be dictated by the professionals and my path would be all but forgotten by most.

She came to my aid by telling me that she knew how I felt and that it would all be OK, but that is not what she said. In fact, she has never uttered those platitudes. Instead, she told me that she knew it felt like a five-alarm fire, and yet all the helpers were just standing in the parking lot and watching. She calmly explained that the urgency I felt wasn’t being disregarded, but rather the precision of the diagnosis and treatment plan needed to take priority.

She walked Dan and I through staging and creating our care team. She then said something that has stuck with me and will remain with me throughout this entire journey. She said, “I know right now that this feels like taking a drink from the fire hose, but I promise you things will start to calm down and make sense.” In that moment, I didn’t believe her. Now I know that she spoke the truth, and that sentence has become my mantra.

Since that first phone call, Jill has been walking with us, side by side. She checks on all of Dan’s needs, asks about my wellbeing and checks in on our daughter. She is able to make us feel seen, heard and honored while maintaining a full caseload. I have never been so impressed as I was when I saw her with a room full of patients, and they all felt as honored and seen as we do. She shows up for us all during our hardest moments, as if we are the only people on earth.

As I count my blessings during this terrible journey, I know that what I am most thankful for is Jill’s guidance and warmth.

I have had the privilege of working closely with Jill May, B.S.N., RN, OCN, care coordinator for our liver and hepatobiliary cancer program at Abbott Northwestern in Minneapolis. I have been consistently impressed with her exceptional skills, dedication and compassion. Jill takes the time to know not only the medical aspects of each patient’s case but also their personal lives, including their caretakers, hobbies and stressors. This holistic approach to patient care has undoubtedly contributed to the positive outcomes and enhanced quality of life for those under her care.

One of Jill’s standout qualities is her remarkable ability to act as a liaison between patients with cancer and their entire medical team. She has cultivated strong relationships with professionals in interventional radiology, oncology, surgery and various other specialties. Her extensive network and open lines of communication ensure that every aspect of a patient’s care is seamlessly coordinated. Jill has all key personnel on speed dial, facilitating quick and efficient collaboration, which is essential in the complex landscape of cancer treatment.

In addition to her exceptional organizational and communication skills, Jill consistently demonstrates a genuine and heartfelt concern for the well-being of her patients. Her caring and thoughtful approach create a sense of trust and comfort, helping patients navigate the challenging journey of cancer treatment.

In conclusion, I wholeheartedly recommend Jill for this award. Her skills, dedication and compassionate approach make her an invaluable asset to our team.

As a registered nurse new to oncology, I could not have asked for a better role model than Jill May, B.S.N., RN, OCN. Jill has been with the Liver, Pancreas and Bile Duct Program at Allina Health Cancer Institute for 15 years and was in oncology nursing for 18 years before that.

Her role here has been the surgical HPB Oncology Nurse Navigator. She has led numerous support groups, given many educational presentations on her specialty and cared for countless patients. Jill exemplifies what it means to be an oncology nurse. With her patients, she is never afraid to have difficult conversations. She has mastered the ability to be both stern yet humble, and direct yet kind. She helps patients open their perspectives again to see themselves as more than just their cancer diagnosis and instead as a whole person — something that is important yet challenging.

She is often the first person patients and clinicians alike turn to for resources, as her depth of knowledge and years of experience are unmatched and invaluable. She is the powerhouse of our program, and the reason many patients are sent our way. As a nurse new to the program, I have gotten used to walking into clinic rooms and facing looks of disappointment from my patients, who inevitably ask, “Where is Jill?”

I believe she is the reason that many of our patients not only are compliant but have the strength to carry on. Many of our patients have challenging treatment plans with poor prognoses, and yet so many do well. She motivates patients by believing in them, meeting them where they are at and helping them navigate the course when obstacles come up. She is the kind of caregiver any facility would be proud to have, and any nurse would be proud to be.

I met Jill May, B.S.N., RN, OCN, when I was diagnosed with stage 1B pancreatic cancer in 2019. After receiving a confirmed biopsy, I was told that a surgical consult was my next step. Within hours, I was contacted by Jill, who explained the journey I was starting and set me up with a top-notch surgeon. Learning I had pancreatic cancer was daunting to say the least, but Jill's compassionate and thorough approach gave me great comfort. In fact, after my first call with her I nicknamed her "Jill the Hug."

Over the past five years, I have experienced her exceptional follow-through, and I know I can count on her to ensure that I get the care I need. For example, after Whipple surgery, I had lost 30 pounds in a matter of weeks (I am 5’ 2”), and I called Jill. She immediately set me up to meet with my surgeon the next morning, which was followed by exploratory surgery with a gastroenterologist.

There are so many moving parts when dealing with cancer, and I’m so fortunate to have had Jill to keep me organized, moving forward and healing. She is adamant that patients get the best possible care and doggedly tracks down whoever is needed to solve an issue.

She has played a critical role in both my physical and mental state. She was there whenever I’ve been admitted to the hospital. This was especially important to me when I my cancer reappeared, and surgery was needed to remove the rest of my pancreas and spleen in 2021. COVID-19 was very active, and the hospital was not allowing any visitors. I was nervous and sad to be there without my family, but Jill was there when I checked in with a pair of socks with tigers on them and again after surgery. I’ve continued to get the value of her time and insight when I join in a survivors’ meeting every month that Jill co-chairs.

All of her effort, skill and caring have been so important to me as I’ve journeyed through chemo, radiation and surgeries and the resulting “chemo brain.” In my heart, I know that Jill has been key to my survival.

Jill May, B.S.N., RN, OCN, is an exemplary oncology nurse at Abbott Northwestern Hospital. She epitomizes dedication and compassion in her profession. Her life’s work revolves around going beyond the conventional boundaries of nursing care to ensure the well-being of her patients.

Jill’s commitment not only extends to the patients themselves but also encompasses a genuine concern for the families affected by the challenging journey of illness. What sets Jill apart is her unwavering focus on both the quality of life and quality of care for her patients. She approaches her role with a holistic perspective, recognizing that the emotional and psychological aspects are as crucial as the physical ones.

For patients facing terminal illnesses, Jill possesses a unique ability to navigate the delicate terrain of preparing them for everything that lies ahead. In these instances, Jill’s approach is marked by empathy and a deep understanding of the profound emotional challenges associated with end-of-life care. She engages with her patients and their families with sensitivity, providing not just medical support but also emotional support during these difficult times. Jill becomes a beacon of comfort, guiding her patients through the uncharted territory with abundant grace and compassion.

Her impact extends far beyond the hospital walls, leaving an indelible mark on all of the lives that she touches. Jill stands as a testament to the profound difference that a healthcare professional with genuine empathy and dedication can make in the lives of those facing the formidable challenges of illness and the prospect of saying goodbye.

For over a decade now, Jill May, B.S.N., RN, OCN, has provided unrelenting care as a hepatobiliary oncology nurse to patients with some of the worst diagnoses you can get in the cancer world.

Even though we work for separate health systems, I have been lucky to share many patients with her as I work as a RN liver transplant coordinator. We have shared many wins and unfortunately many loses together over the last decade. During this time, I have witnesses firsthand her extraordinary organizational and execution skills, her compassionate caring and expert communication with patients, and her no holds barred advocacy to ensure each and every patient get the care and treatment they deserve. All this has been done despite the reality that patients with hepatobiliary cancer can and do provide a major mental burden on their caregivers. It is common to review imaging in the morning that shows progression of disease in one patient, and then an hour later, you celebrate a disease-free report with another patient.

The mental health challenges presented by patients isn’t the only issue that Jill — and nurses in general — routinely deal with. All the above, and more, is done, even though she must do more, with fewer resources. Lay-offs, nursing strikes and a decreasing budget has provided its own issues. These have all happened, sometimes multiple times, over the last decade. This leads to the difficult decision of working overtime without getting paid overtime or allowing patients to suffer as a result.

I can attest that she has never taken the easy path. Most weeks she will work overtime, while knowing she won’t get paid more, to ensure patients get the care and information they deserve. Given my role as a liver transplant coordinator, and sharing many patients with hepatocellular carcinoma with her, I have heard directly from mutual patients the benefits Jill provides to them.

However, I have also seen and heard this on a personal level. A friend I play hockey with was taken too soon by pancreatic cancer. I have been told numerous times by his brother (who I still play hockey with), his family and from other friends the extraordinary care and treatment he received from Jill.

Jill simply is everything you would want in a care provider. She is extremely knowledgeable in her field, she is compassionate and caring to no end, and it is an absolute guarantee that she will never allow anything but the best to happen to her patients. She will fight right alongside each one until the end. She is the first person I would call if any one of my family members needed help.

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Jill May, B.S.N., RN, OCN, is a highly respected oncology nurse known for her exceptional dedication, compassion, and holistic approach to patient care. Her role as a care coordinator involves seamless collaboration with multidisciplinary teams, ensuring comprehensive care for patients with complex cancer diagnoses. Jill's ability to connect with patients and their families on both medical and personal levels fosters trust and comfort. Her unwavering commitment extends beyond clinical duties, providing emotional support and advocacy, even amidst challenging healthcare environments and resource constraints.

Several colleagues, patients and caregivers nominated Jill May, B.S.N., RN, OCN, for the 2024 Extraordinary Healer Award for her dedicating to caring for those with gastrointestinal cancers.

Taking a Drink From the Fire Hose

Stacey Karkoc

Gina Roller’s best friend, Kerri-Lynn Larimer, adopted and lived by the motto “crazy not to” long before she was diagnosed with metastatic melanoma.

For Keri-Lynn there was little question about whether to go forward with something fun or even a little bit wild. With her signature smile and laugh, she’d remind her friends and family that it was foolish—even “crazy”—to miss out on an opportunity.

The first word anyone would use to describe her would be ‘fun,’” Gina said. “Everyone who met her loved her.”

Gina first met Kerri-Lynn in 2008 and was quickly drawn to her exuberance. The two grew so close that they called each other “their person,” and Kerri-Lynn’s two sons referred to Gina as their second mother.

In November 2017, Kerri-Lynn asked if Gina would accompany her to a doctor’s appointment to learn the results of a biopsy. The two friends sat together with Kerri-Lynn’s husband, Dean, and received the news: Kerri-Lynn had Stage III melanoma.

The two friends went out for lunch after the appointment. Throughout the meal, Kerri-Lynn kept up her positive outlook, continuing to smile and laugh even as she considered what was ahead of her.

“She was pretty determined that she was going to beat it, and I thought 100% that she was right,” Gina said.

Kerri-Lynn died in October 2018, just short of a year after her diagnosis. She was 44. A few weeks before her death, Gina spearheaded an effort to renovate parts of her friend’s home in Thompson, North Dakota, before Kerri-Lynn returned from Mayo Clinic in Rochester, Minnesota. The original plan was to just lay some new flooring and paint a few walls. But news spread quickly around the town of 1,000, and Kerri-Lynn’s wide friend circle stepped up to help. Nearly 100 volunteers pitched in, with some even traveling from Kerri-Lynn’s hometown in Canada.

Over the course of eight days of work, the crew painted, replaced fixtures, and gutted and remodeled the bathroom. Together, Kerri-Lynn’s support network transformed her house into her dream home, complete with the wood floors she’d always hoped for.

Kerri-Lynn was able to see the work when she returned home to transition into hospice. In Kerri-Lynn’s final days and nights, Gina stayed with her to keep her company and allow her husband Dean to get some rest. As she sat next to her bed, Gina felt helpless. She’d organized the renovation, but she wanted to do more in honor of “her person.” Kerri-Lynn was a giver herself and spent her career helping others as a social worker.

Just before Kerri-Lynn passed away, Gina started a fundraiser to buy care pouches to give to patients at the local cancer center. She raised enough to put together more than 200 pouches.

Gina and the Thompson community found other ways to remember the woman who was always quick with a smile and a hug. Kerri-Lynn had been instrumental in starting a high school softball team and the field was named after her. Gina inked the words “She keeps me safe and wild” on her foot in memory of her best friend.

“Life just isn’t the same without her,” Gina said.

During the COVID-19 pandemic, Gina once again felt she needed to use her time to give back. In looking at nonprofits she could support, she found the website for AIM at Melanoma.

“It was like a lightbulb moment of ‘there it is, that’s what I want to do,’” she said. “It’s such a great organization with a mission that I really liked.”

Though ONEHOPE, Gina is hosting a virtual fundraiser, selling wine to benefit AIM at Melanoma. ONEHOPE will donate 10% of the proceeds from the purchases made through Gina. She will also give her commissions to AIM.

The event, which began about a month ago and will remain open indefinitely, has raised more than $700 for the nonprofit so far.

“I’m excited to help people realize the impact they can have through something that might seem so small,” she said. Giving back and paying tribute to her best friend has helped ease that feeling of helplessness that Gina struggled with during Kerri-Lynn’s illness and after her death.

But sipping wine for a good cause seems like exactly what Kerri-Lynn would want her friends to do. After all, it’d be crazy not to.

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