Shock.
Grief.
Needing support from your community.
Costs of medication, doctors’ appointments, treatment.
These are all common with a blood cancer diagnosis. And for patients with a blood cancer that’s chronic, these challenges aren’t just part of a road to remission. A chronic blood cancer has to be managed every day, indefinitely.
That reality hit Kendra hard when she was diagnosed with chronic myeloid leukemia (CML) in 2022. She didn’t have a lot of support nearby, so it was hard to find people who understood that her diagnosis was ongoing. But because she'd participated in a Team In Training event years before (supporting a friend whose father had passed from lymphoma), Kendra knew where to find community: The Leukemia & Lymphoma Society (LLS).
She decided to first reach out to our registered dietitians to learn how her food choices could support her treatment. Our Patti Robinson Kaufmann First Connection® Program also matched Kendra with a peer volunteer she could relate to: not only did they have CML, but they also took the same medication as her. And she started exploring LLS Community, our online gathering place for anyone affected by blood cancer. It's been a resource for her ever since.
“My CML group on LLS Community? They’re a trusted source for me. That’s my people,” Kendra says.
Through LLS Community, Kendra discovered Pen My Path, LLS’s four-week writing workshop for people with blood cancer. She’d written poetry about her experience before, and through the workshop, her writing flourished further. It was so helpful that she became a Pen My Path facilitator, and this year, she'll host her fourth run. “It helps people tap into what’s difficult or scary about having blood cancer, and get those feelings out,” she explains. “What people trust you with when they’re writing about their experience—it's an honor to receive that.”
In that first Pen My Path workshop, Kendra wrote a heartfelt piece about her diagnosis, and taking a life-changing trip to walk the renowned Camino de Santiago pilgrimage route through France and Spain. We’re thrilled to share Kendra’s perspective with you here.
The hills I have climbed: Kendra’s story
By Kendra Webster (social worker, Pen My Path facilitator, writer, and photographer)
My diagnosis
That 10 p.m. phone call from my doctor is one I’ll never forget. She was calling about the results from routine bloodwork from an earlier appointment that day. I listened to my doctor explain that the normal range for a white blood cell count is between 4,000–11,000; mine was at 120,000. We knew something was seriously wrong, and I had no time to waste. I hurriedly changed out of my pajamas, called three people until one friend picked up her phone, and we drove to the emergency room.
Four hours later, my life as I knew it would change with a diagnosis of leukemia.
The ER doctor told me that I was being admitted to the hospital indefinitely so that more tests could be run and a treatment plan developed. I’ll never forget entering the main hospital in a wheelchair at 2 a.m. The lights were dimmed, and it was eerily quiet, given that most people were asleep and only the night shift staff were on duty. I was alone with a new leukemia diagnosis. Like many of us who have been diagnosed with any serious illness, the foundation of my world was irrevocably shaken.
I was diagnosed with chronic myeloid leukemia (CML) on June 24, 2022. I’d already been sitting in a deep well of grief with the recent losses of my dog and my marriage. Facing the loss of my health felt like more grief than I could handle. I wasn’t prepared for the diagnosis or the many complications, one being a lack of a support system. I didn’t have many friends in the area where I lived. I reached out to my ex-wife, my brothers and my parents, but none were able to travel to be with me. My entry into the world of a blood cancer patient was lonely and terrifying.
Finding the right treatment
For most people, CML is treated with a daily medication called a tyrosine kinase inhibitor (TKI). My doctor told me that TKI medications work well for most people within a few months. For those of us who are sensitive to side effects, however, it can take a while to pinpoint a tolerable dose that is still effective. Initially my side effects included fevers, nausea, and diarrhea. I lost twenty-five pounds in my second month on the medication because I was unable to eat much, and then I got oral thrush. Most nights, the skin on my face would bubble up in red welts. Over time, I learned that they mostly receded by morning. I developed neuropathy (numbness and tingling) in my hands and body if I stayed in one position too long. After fluid accumulated in my lungs (what’s called a pleural effusion) around Christmastime, my oncologist reduced my dosage. A few months later I started having cardiac side effects, so we reduced the dose even further.
In the beginning, I often felt as if my reactions to the medication were being minimized and I was not being listened to. So, in the midst of dealing with side effects and grieving, I found myself looking for a new oncologist. Luckily, I now have found a physician who listens to me without implying that I’m overly anxious.
Usually well-spoken and self-confident, I have found that it can be challenging to go to my oncology appointments alone. To deal with this, I have developed a few strategies. For example, I write out all my medical questions ahead of time so that I don’t forget them amid all the emotion and fear of the appointment. I also rehearse my questions in the waiting room, just to be sure. I see my oncologist every three months, so I have plenty of opportunities to practice these new skills.
My oncology appointment in November 2023 was an emotional one. My doctor shared that I still had not reached full molecular remission—the goal for CML treatment. I wondered for the millionth time if I was ever going to reach that milestone. Overcome with sadness and fear, I jammed my thumbnail into my forefinger to try to stop myself from crying. Not noticing my unspoken upset, my oncologist went on to tell me that I also needed to lose more weight. As I sobbed outside the doctor’s office after that appointment, I wondered how much more of this I could take. I was facing another birthday and holiday season alone, and, apparently, now I needed to lose weight, too. This all felt like such a giant uphill battle.
A new adventure
A few days later, I saw that my writing teacher was leading a trip to Spain in September 2024. Participants would write, learn watercolor, and hike 100 kilometers of the Camino de Santiago. Traveling to Europe had been at the top of my bucket list for years and was especially compelling after my leukemia diagnosis. A hiking goal like this could certainly inspire me to focus more closely on my health. But could I really get in shape enough to hike 100 kilometers? What about my fear of flying? What about the fact that I would know nobody on this trip except for my writing teacher? I didn’t even speak Spanish! Did I have what it would take to do this?
I mulled these questions over and over for three days before finally registering. The gauntlet was now set. I would be a pilgrim on the Camino de Santiago.
The Camino de Santiago, or The Way of St. James, is a series of routes leading to the Santiago de Compostela Cathedral in northwestern Spain. Ancient tradition declares the cathedral as the final resting place of the apostle St. James, and the routes to Santiago have been traveled by pilgrims throughout Europe for hundreds of years. The Camino is on the UNESCO World Heritage List and hosted nearly half a million pilgrims in 2023. The Camino routes are marked by yellow arrows and signs featuring a scallop shell, the iconic symbol of The Way.
After months of cardio and weight training, walking many miles, amassing my hiking gear, and gathering all the courage I possess to board an international flight for the first time, I arrived at the Santiago airport with a few other pilgrims on September 1, 2024. To say I was apprehensive about this journey would be a colossal understatement. It took all the courage I could summon to get there!
Once there, we spent three days writing, learning watercolor, and getting to know one another before we set off on the trail. Getting to know the other group members over those first few days, I wondered if I would always be the last to arrive at our destination each day. I wondered if they would judge me for still being overweight. I wondered if I had what it took to be a part of this community of women who I perceived to be in better physical shape than me. I also wondered if the underlying fatigue and digestive issues from my medication would cause problems. But I had already overcome many, many fears to even get to Spain, and I wasn’t going to turn back now.
On our second day, we wrote a piece about standing on the edge of uncertainty, each of us having been called to this ancient pilgrimage for various reasons. I remember thinking that a large part of why I was there was to release the grief and pain of the last several years. I also wanted to learn to embrace a future that now includes CML. Could that future possibly include more joy than pain? I wrote in our writing circle on September 2: “I’m standing on the edge of discovering the path before me, a path I can’t predict or control or even imagine ahead of time—much like life itself. I am standing on the edge of experiencing the possible, the magic, the beauty of the terrifying, inspiring, unimaginable next step.”
Carrying things uphill
We set out on our pilgrimage two days later, having learned how to pack our day packs and use our hiking poles. We carefully considered which items we needed to carry with us each day as we walked from lodging to lodging, and we were grateful that a van took the rest of our luggage for us to the next hotel. I was also grateful to know that the van was available to take any of us to our next stop if needed.
Our first steps on the Camino were all uphill, traversing the last part of the mountain ranges that begin in France. I’m no stranger to uphill battles, but this certainly was a memorable one. My anxiety quickly set in when I saw how steep the hills were, and I was not yet adept at using my hiking poles. My thoughts quickly turned to how all of this might have been a huge mistake, but I also knew that I at least needed to finish that day’s hike because nobody could come and rescue me there in the forest. I had no choice but to keep walking up.
As I looked around, I also saw the incredible scenery surrounding us. I took in the wide vistas of trees and mountains, the cool air, and the excitement and encouragement from my new friends—mi camigas. I wasn’t alone. I had people to help me and encouragement of my own to share when my friends got tired. Maybe I really could do this! I slowly trudged up the hill, finally arriving at a village called O Cebreiro, possibly one of the most charming places I have ever seen.
I learned a valuable hiking lesson that first day, one that I would learn over and over throughout my time on the Camino. Going uphill actually requires you to go slower and to be mindful of each step. If you do this, you don’t completely wear yourself out trying to reach the top. I’m someone who always wants to rush through the hard stuff to get it over with, but as a hiker with many kilometers to walk in a day, rushing up each hill just isn’t a smart way to go. It took me many days and many hills to realize the wisdom of this advice! The metaphor is also not lost on me as someone with an incurable, chronic blood cancer. Each three-month oncology appointment is a hill within itself. Like I learned in Spain, I need to go slow and be mindful of each step.
One of the many magical parts of walking the Camino with this group is that everything I experienced was for both the first and last times. The forests, farmlands, tiny stone villages, and café stops were all places that we would never visit again on the trip. This brought focus to each moment and a desire to drink everything in. My writing teacher and hiking guides encouraged us to slow down, to take note of all we felt, saw, heard, and tasted, and to photograph, sketch, or paint anything that inspired us. We started each day with a quote and a poem and took note of things that inspired or challenged us. We walked alone and with one another, having deep conversations, singing, dancing, and sharing our experiences. This trip was not about simply getting from point A to point B each day, but about savoring each moment in every possible way as we hiked. I felt, for the first time in many years, an unmistakable joy welling up within me.
I also learned that when you are walking several kilometers daily, what you carry with you is one of the most important decisions you can make. Items include the tangible (i.e., backpack, hiking poles, trail shoes, water, medications) as well as the intangible (i.e., insecurities, worries about life at home, fatigue, or medical issues). In one writing assignment, we considered these choices more deeply, thinking about everything we carried and its significance to our journey.
In this journal entry, I remember the things I carried on the Camino:
I carry with me one REI burnt orange backpack (my favorite color), one black fanny pack, and my hiking poles. I also carry with me an artist, one who sees the world in juxtapositions—yellow flowers against stone, moss on rock, light emerging from the shadows. I carry with me a photographer’s eye—one who looks for, and often finds, beauty in unexpected places. I carry with me old wounds, old fears, old inhibitions, and my mother’s recurring mantra to be careful. I carry with me the sheer terror of worrying about what horrible thing might happen to me if I am not careful. I carry with me plenty of Imodium, one first aid ice pack, a thermometer, hand sanitizer, an N94 mask, Tylenol, Kleenex, and my leukemia medication. I carry with me the struggles of these last seven years. I carry with me my failed marriage and the slow, steady release of my ex-wife from my life. She leaves me like sand falling through my fingers, one small grain becoming one with a flood of disappearing hopes and dreams for our future together. I carry with me my diagnosis, my quiet, my sense of wordlessness, and my ability to connect with others when some parts of my experience seem so impossible to share in a way that anyone who does not have cancer could possibly understand. I carry with me Euros, credit cards, ID cards, and health insurance cards. I carry a description of CML, in case I’m unconscious and unable to speak for myself. I carry with me a warrior spirit, while I myself am not at war. And I carry a willingness to open my arms and hands to it all, the joys and the sorrows. As the poet Rumi says, no feeling is final. I carry with me one Camino scallop shell. I carry with me my newfound identity as a pilgrim. Soy una peregrina!
Reaching the end of the path
Drawing near to the final days of our journey, we each began to think about the small stone we’d brought from home, symbolizing the burden we wished to leave behind when we completed the Camino. This is part of a longtime pilgrim tradition. For me, there was a continuing theme of considering joy. By training for and walking the Camino, I had discovered an unmatched joy in sharing this experience with my Camino sisters. I was in Spain to release the burden of grief I carried from having to deal with so much pain and fear by myself over these last few years.
I carried that stone for the woman who answered that 10 p.m. phone call, and the one who sat in that hospital room alone and scared that night. I carried that stone for the woman who was terrified each time those red blotches swelled on her face, worried that she was having some kind of allergic reaction to her medication. I carried that stone for the woman who has a Master of Social Work degree, but often became so undone during an oncology appointment that she forgot to ask vital questions about her health. I carried that stone for the woman who faced all of this at the edges of a post-COVID world and the most isolating time of her life. I gently held all of these selves in my heart as I neared the final days of my pilgrimage. There were many tears, and there was also much laughter, singing, and joy.
When considering how this new sense of joy could manifest in my outer world, I was reminded of my friend who had died from metastatic breast cancer the Christmas before. She was one of the most joyful people I had ever known, despite her own experience with cancer and the eventual outcome. She would have told me that I do not need to manifest joy; joy manifests in me. Joy floats into me from unexpected places. On the Camino, it floated in during those moments when I wasn’t looking for it—through my camera lens, through the end of my paintbrush or pen, through a shared meal, glass of beer, and many unplanned conversations in the forest with my friends. I found joy in chatting with a woman from Ireland at a café, seeing the lady who was hiking with her Corgi in her backpack, fresh squeezed orange juice, or tasting a new local cheese or wine. Joy was laughing in the rain with a friend or getting a hug when the miles had been too long, or the hills had been too steep and muddy. The more I noticed and noted these moments of joy in my journal, the more plentiful they became. Joy is not just getting from point A to point B, but also enjoying and cherishing all the moments in between because this is the first and last time you will experience them just as they are right now. You can still sing even if the hill is long. You always have the choice to stop and photograph the scenery at the midpoint if you are walking slowly enough to notice it.
On our last day, before we entered Santiago de Compostela, we made our last stop at the Mountain of Joy. Our first glimpse of the cathedral was in the distance. Now a tight-knit group of fifteen pilgrims, we wrote, we laughed, we cried, and we sang. We celebrated the long journey we had made together and congratulated one another on this accomplishment. I felt so blessed by this community of sisters—no longer alone on this incredible journey of life. As I laid my stone on the Mountain of Joy, I was finally able to release the many burdens I had carried with me to Spain. Was the journey complete, or had it just begun?
Since returning home, I’ve discovered that pilgrimage can take any form on any day. I don’t need to travel to be on a pilgrimage. These lessons and experiences from Spain are now a part of me, and I am grateful for them—even the hills that I somehow thought I could never climb. It turns out I can, one, slow, thoughtful step at a time. I just need to keep on walking.
LLS is here to help—whatever your diagnosis looks like
Kendra learned about LLS years before her CML diagnosis. So when she heard the words, “You have blood cancer,” she knew exactly where to go. But that’s not always the case.
People with blood cancer, including chronic types of blood cancer, need access to resources that make their day-to-day just a little easier. So that they can keep living life—from spending time with loved ones to embarking on an unforgettable trip, like Kendra did.
We offer a wide variety of these resources at LLS. Check out a few below.
- LLS Community: our online gathering space for anyone diagnosed with or caring for someone with blood cancer. Pen My Path is a writing workshop available exclusively through LLS Community.
- Peer-to-peer volunteers: patients and caregivers can talk to someone with similar experiences, matched specifically to them.
- Information Specialists: highly trained oncology social workers and nurses who assist through treatment, financial, and social challenges. Available Monday to Friday, 9 a.m. to 9 p.m. ET.
Learn more about chronic types of blood cancer:
- Chronic lymphocytic leukemia (CLL)
- Chronic myeloid leukemia (CML)
- Chronic myelomonocytic leukemia (CMML)
- Myelodysplastic syndromes (MDS)
- Myeloproliferative neoplasms (MPNs)