Kim was a caregiver for her sister while she battled stage 4 Hodgkin Lymphoma for nearly five years, from diagnosis through an autologous transplant. She turned her experience into change and has since become an activist in finding a cure for cancer. Kim has worked in politics and assisted in the passing of numerous legislative pieces impacting patients with cancer and their families. She is an activist in the field of oncology, nursing and beyond. Additionally, she is a volunteer and champion for a cure with the Leukemia and Lymphoma Society's Light the Night Campaign. Kim has shared her experiences with cancer as a contributor with Cure and through public speaking engagements throughout the United States.

Kim Johnson

Kim Johnson was a caregiver for her sister while she battled stage 4 Hodgkin Lymphoma for nearly five years, from diagnosis through an autologous transplant. 

I have written about the Light the Night walk put on by Blood Cancer United, formerly known as the Leukemia and Lymphoma Society. As the date of my local walk approached this year, I began to ponder the notion of survivorship. It's not as if this title, survivor, has not crossed my mind since my sister's death on July 1. The looming date of the Light the Walk only exacerbated those thoughts.

For those who have not attended a walk for themselves, I highly encourage you to seek one in your area and participate if you've been affected by blood cancer. For context, let me explain a bit about the walk. Participants each carry a lantern: a red lantern is carried by friends, family, and supporters of those who have endured or are currently enduring blood cancer. Yellow is carried in remembrance of those who have died from cancer. And survivors carry white lanterns. There is a ceremony to celebrate each lantern, and events similar to a carnival atmosphere for those who attend.

To those outside the world of cancer, it may be strange to have an entire pavilion and an event dedicated to cancer. From my first time attending, the thing about this walk that has always struck me most is that it is more than a remembrance. It is also an opportunity for those who are going through something, or have been through something, to feel less alone. It is a place of community where you get to meet people who are going through or have gone through something similar to what you are. An event where patients mingle with caregivers and families have the opportunity to show gratitude to those who cared or are caring for their loved ones.

Every year that my sister attended, she was given a survivor T-shirt and a white lantern to carry. And I, although I worked in the field of oncology and lost patients to both blood and other cancers, always elected to carry a red lantern. I entered the field of oncology as a caregiver, so it always felt right to carry a red lantern in support of my sister. And so, year after year, together, we would go, each carrying our individual lanterns. Due to my sister’s death, I have wondered if her inability to carry a white lantern negates her also carrying the title of survivor.

My sister battled cancer for 11 years, and along with being a patient, she was regarded as a survivor. This was not a title that my sister really felt comfortable leaning into until she was told she was in remission post-transplant. And when re-diagnosed with cancer several years ago, I know she again struggled with the identity of survivor as she once again battled stage IV cancer. While I refute the terminology of one "losing their battle to cancer", admittedly, survivorship is not a title I gave much thought when the outcome is a person dying rather than gaining remission or a cure. Yet, with the walk drawing near this year and my sister no longer here, I have often found myself contemplating it.

While my sister was not here to carry a white lantern this year, I chose to attend the event, just as I had when she was still here. It was different this year for many apparent reasons. Aside from her absence, the most glaring reason was that when it was time to pick up a lantern, I carried a yellow lantern in remembrance of my sister. And as I walked around Washington Park with my friend Dan, I was flooded with memories of years past: when I had attended both with my sister and for her when she was too sick to participate in herself. Admittedly, I am unsure if I will continue to attend in the future, as I am still in the throes of grief. What I can say with certainty is that although my sister ultimately succumbed to a disease that ravaged her for over a decade, she survived for 11 years. She beat the odds and statistics regarding her expected outcome. She endured more than most can fathom. And to me, dying should not strip away a title that was earned throughout her time from diagnosis to death. And while her death removes the title my sister may have disliked most in life- cancer patient, my sister will forever remain a daughter, sister, and friend, and a cancer survivor.

This piece reflects the author’s personal experience and perspective. For medical advice, please consult your health care provider.

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Articles

The Light the Night walk, organized by Blood Cancer United, serves as a poignant event for those affected by blood cancer, offering a sense of community and remembrance. Participants carry lanterns symbolizing support, remembrance, and survivorship. The author reflects on the concept of survivorship following the death of their sister, who battled cancer for 11 years. Despite her passing, the author believes that her sister's enduring fight and resilience earn her the title of survivor. The event provides solace and connection for those navigating the complexities of cancer.

I attended this year’s Light the Night walk in remembrance of my sister, reflecting on her 11-year battle and enduring identity as a cancer survivor.

Light the Night and Survivorship: The Importance of Remembrance

Since my sister’s death nearly five months ago, a lot of advice and remarks have been shared by others. Many have noted that "she got more time than we ever thought she would" and "she was on borrowed time for so long." And while I do think these words may be intended to bring solace or fill the silence, for me, they have not been as helpful as I believe the people offering these anecdotes intend. While there is factual truth to both statements, as my sister was diagnosed terminal nearly 11 years before her death, that does not make the loss any less. 

I believe time to be a gift, and as such, my sister was gifted more than a decade despite a terminal illness, and I do have gratitude for that. Having said that, my sister was 38 when she died, so noting the time she lived with cancer does not negate the loss of a life at such a young age. So, when somebody says something regarding the time she was gifted post-diagnosis, I have been tempted to ask them: Do you think 11 years was enough?

I do not mean this in the sense of quality over quantity, or in any of the hallmark ways I practiced as a provider, nor regarding the lessons I was given by her palliative and hospice team, or the plethora of hospital professionals who treated her. I mean, my sister was just 38. When someone of the age of 38 dies without a cancer diagnosis, people tend to speak of the death as being untimely. Gone before they had a chance to live life fully. Words are shared regarding missed opportunities and the life they had yet to live. So then does that change because my sister did have cancer? Why does cancer mean that 38, or contextually, the 11 years that she lived with the terminal diagnoses, mean that that was enough time?

Before my sister passed, I was writing another article. One discussing how much time, or rather, what amount of time would be enough. Would there ever be enough time granted to her? What would be a metric to show that, despite a terminal diagnosis, my sister was given “adequate time”?

I can say with certainty that due to her condition and the progression of her disease, my sister was ready. But she wasn't ready because she wanted to die at 38. She wasn't prepared because she elected to die. Or because she felt like she had fulfilled everything she wanted to do in this life. No, cancer forced her to be ready. This disease ravaged her, it dictated her life, it determined so much for her. And in the end, it determined her death. 

My sister did not choose to die any more than she chose to be diagnosed with cancer. She was made to be ready and conditioned by cancer. It's not that she got to swim in the ocean and visit the Great Barrier Reef in Australia. That she got to see the beach one last time and feel the sun on her skin and the sand beneath her toes. She didn't get to return to Chicago, the city that has held so much meaning for my family. She was never able to visit the pyramids in Egypt, which she so badly wanted to see, their peaks rising before a sunrise. She never visited Hawaii to hula dance at a luau, as we always talked about after seeing "Lilo and Stitch" as kids.

These are just a small fraction of all the things that my sister did not get to do because of cancer. Knowing that, for all the people who have told me she got so much extra time, I ask you again: did she get enough time?

The narrative reflects on the emotional complexity of losing a loved one to cancer, challenging the notion that extended survival equates to sufficient time. Despite living 11 years post-terminal diagnosis, the loss of a 38-year-old sister remains profound. The author questions societal perceptions of time and fulfillment, emphasizing that cancer dictated her sister's readiness for death, not personal choice. The piece underscores the unfulfilled dreams and experiences lost to the disease, urging a reevaluation of what constitutes "enough time" in the context of terminal illness.

I believe time to be a gift, and as such, my sister was gifted more than a decade despite a terminal illness, and I do have gratitude for that.

After 11 Years With Cancer, What Is Enough Time?

Although my sister was terminally ill for over a decade, her death still came with a certain level of shock. Not just to me, but to those close to her and to those who had been a part of her care team for almost eleven years. Initially diagnosed with non-Hodgkin's lymphoma, her prognosis was not good. Her diagnosis was changed to Hodgkin's lymphoma post-biopsy, and about three months into treatment, we were faced with the news that my sister may not receive the cure we had hoped for.

We walked through so many end-of-life conversations for over ten years, and yet she had always survived. In the spring of 2024, several people had gathered to say their goodbyes. People who loved me came to support me through what we thought were her final days. And again, my sister came back from an unresponsive state and what seemed like the precipice of death and pulled through.

In June of this year, it all felt different. While I had thought I had been there before, this time was somehow not like the rest. Admittedly, a part of my mind still wondered if, again, my sister would rebound. Walking into Denver Hospice felt familiar. When she was sick in 2021, someone I consider a brother, AJ, and I visited, as the plan was to admit her to hospice. It was also a place that I had visited several times to see patients when I was a care provider.

As I walked through the doors on June 30, it was like doing so for the first time. And then, when the door to her room was opened and I saw my sister lying in bed, I knew. As a provider within oncology, I have had the honor of being bedside as patients were transitioning from life to death. And before me lay my sister, in the same place as I had seen so many others: at the end of life due to cancer.

My mother stayed with us for a time, and we met with her care team, but when they left, I asked for some time alone with her. I will keep the words I said to my sister to myself, but I do want to share the thoughts and feelings from that time. Standing beside my sister's bed, all the anticipation of the past almost eleven years came crashing into the reality that literally lay before me.

Everything I had tried to plan for, envision and prepare myself for was shattered, and the moment I had been dreading deep within my soul was happening. All at once, emotions of grief and the loss that I knew was going to occur overwhelmed me, and I stood holding my sister's hand, numb.

It is hard to explain when something that you have spent over a decade anticipating occurs. In so many ways, it was everything that I had dreaded and feared it would be. It was also nothing like I had constructed it to be at the same time. It has been almost five months since my sister's death. Some days feel easier, and other days, I cannot help but go back and replay all that happened, how it happened, and wonder why it could not be different. My mind is still trying to reconcile with the anticipatory grief of her loss, combining with what is, at times, an indigestible reality that my sister did not make another miraculous recovery but rather did finally die from complications of cancer.

The narrative captures the emotional journey of a sibling dealing with the prolonged illness and eventual death of a sister from cancer. Despite a decade of anticipatory grief and numerous end-of-life discussions, the finality of her sister's passing was both expected and profoundly shocking. The author reflects on the complex emotions experienced during this time, including grief, loss, and the struggle to reconcile with the reality of her sister's death. The piece underscores the unpredictable nature of terminal illness and the emotional toll it takes on loved ones.

I share how my sister’s final days felt different from her many rebounds and how I continue to process the grief of losing her after years of anticipation.

Reflecting on My Sister’s Final Days After Years of Unexpected Rebounds

When my sister was initially diagnosed with stage 4 cancer, there was optimism and hope due to the notable cure rates for Hodgkins Lymphoma. But after her first treatment failed and her cancer refracted, palliative care became part of her ever-expanding care team. I engaged in what would be the first of many conversations surrounding my sister’s death.

These conversations often looked the same, with doctors noting that my sister was an anomaly and that, for reasons unknown, her cancer was more complex to treat than most. Call it happenstance or luck; my sister was diagnosed with cancer on the cusp of a paradigm shift within the field of oncology. Each time a treatment failed, a new therapeutic opportunity seemed to appear.

Her clinical care team and I fought incredibly hard for my sister to be considered for clinical trials and for the compassionate usage of novel agents that were not yet available for blood cancers. Every treatment resulted in reactions and complications, but she sustained and received an autologous bone marrow transplant and gained remission. Unfortunately, just shy of her five-year post-transplant cure date, testing showed a complete relapse, and she was re-diagnosed with stage 4 Hodgkins Lymphoma.

I’ve written about nearly every part of my journey as a caregiver and my sister’s battle with cancer, but I’ve never shared my sister’s name in my writing. This article, though, isn’t about treatments tried, complications endured, remedies used to aid her along the way, a terminal diagnosis, aspects of me being a caregiver or even my pursuit of nursing. This article is about my grief and the loss of my sister, Kathleen Ann Johnson, to cancer at the age of just 38.

Our relationship was complicated. That word, complicated, is one that I’ve often used to describe everything that happened throughout cancer and everything that's happening now amid her passing. Although not unexpected, her passing has been overwhelming as I’m consumed with memories, grief and shock that her death has occurred. To some, that last sentence may be a surprise.

For those who’ve lived or are living in the realm of terminal diagnoses, we know that premature death is inevitable. With my sister having lived with cancer for so long, having had engaged in numerous conversations regarding her death, it nearly came to feel unreal to me. That doesn't mean I wasn't acutely aware of her diagnosis or that I was ignorant of the fact that she had an aggressive cancer ravaging her. It means that you separate yourself from the future to protect yourself from the reality of the present, and then suddenly, it happens, and the future becomes the present.

When I stood beside my sister's hospice bed, I knew that this time was different than the innumerable close calls to death she'd had. I knew that despite her understandably being reluctant to accept a diagnosis throughout the years, her fear of dying, and her ability to surpass all expectations of survival, this time, she was ready. And this time, it was me who was reluctant to accept the reality I was facing.

It was me who stood flooded with fears. Swallowed by silence, just her and I alone, as had been the case so many times throughout cancer, knowing the moment I had been dreading for so long- was here. It is despite both my sister's and my hopes and wishes that after just under 11 years since her diagnosis, on July 1, 2025, she passed away peacefully in her sleep. My sister had an abhorrently brutal battle with cancer. It is my hope that whatever comes after this life, wherever she may be, she has found the serenity that I am now seeking amid tremendous sorrow.

The narrative reflects on the emotional journey of a caregiver whose sister, Kathleen Ann Johnson, battled stage 4 Hodgkin's Lymphoma. Despite initial optimism and numerous treatments, including clinical trials and a bone marrow transplant, her cancer relapsed. The author shares the profound grief and complex emotions experienced following her sister's passing at age 39. The story highlights the challenges of living with terminal illness, the emotional toll on caregivers, and the struggle to reconcile with the inevitable loss, while seeking solace and serenity in the aftermath.

After nearly 11 years of living with Hodgkin lymphoma, my sister Kathleen passed away peacefully at 38, leaving me to navigate the sorrow of losing her.

Kim Johnson

Light the Night and Survivorship: The Importance of Remembrance

After 11 Years With Cancer, What Is Enough Time?

Reflecting on My Sister’s Final Days After Years of Unexpected Rebounds

Saying Goodbye to My Sister With Hodgkin Lymphoma

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