It was early January of 2014, when my oral surgeon told me that I had squamous cell carcinoma — base of tongue cancer.

He was so surprised by the biopsy results that he made a phone call to double check them before I arrived at his office for my follow-up appointment. In all actuality, neither he nor my dentist thought that the painful lesion at the base of my tongue looked like cancer. Both of them told me that oral cancer rarely hurts. This is true, so I am glad mine did. The pain is what allowed me to be treated while it was still at stage 1. The cancer looked and felt just like one of the many canker sores I’d suffered in my lifetime. The only strange thing about it was its location, and the fact that it refused to heal.

A couple of months earlier, I was in a ton of pain, so I was relieved when I heard from my dentist’s office. It was time for my three-month checkup. “Perhaps Dr. F will know what’s up with this sore,” I thought to myself.

Dr. F lifted my tongue up as far up as it would go. The lesion was tucked under my tongue — way in the back. Since oral cancer rarely hurts, and because it didn’t look like cancer to him, my dentist felt that the tissue was infected. He prescribed an antibiotic. He was very firm, however, when he said I should return, at once, if it did not heal by the end of 10 days. At exactly 5 p.m. on the tenth day, I begrudgingly called his office.

My cancer surgeon later applauded my dentist for saving my life.

After my diagnosis, I was referred to the Swedish Cancer Institute in Seattle. The four-hour drive from Forks, Washington was long. Head and neck surgeon Dr. N and his assistant were caring, thorough, and funnier than hell. I felt so comfortable with them, that when he said I had time to get a second opinion, I told him I didn’t need one. I had surgery to remove the cancer on Jan. 21.

Dr. N recommended that I get a neck dissection. He said that although the tumor was small, the only way he could rule out spread was to remove all of the lymph nodes on the right side of my neck. I lived on liquid nutrition, taking nothing by mouth, for 10 days. During surgery, it was discovered that the cancer had spread to the floor of my mouth.

Still, Dr. N felt he had gotten a clear margin. He said we should keep chemo and/or radiation in my arsenal in case the cancer returned. I was cleared to eat and drink by mouth when I could eat a cup of apple sauce in front of the doctor without choking. Even eating soup was comical at first. My first bowl of wonton soup took two hours to eat, but I got it down...darn floaty green onions.

Half of my face, neck and mouth are still numb after nine years. Although my face regularly feels like it is sliding off of my skull, I suffered no real disfiguration.

I was told from the start that because my cancer was not related to active tobacco use (I quit smoking 16 years prior to my diagnosis), and because I was HPV negative, I will most likely get oral cancer again. Dr. N said it could be in five years, 10 years, or in 20 years, so I must remain vigilant. I remain vigilant by seeing my oral surgeon every six months. I know that if I get a sore or lesion that doesn’t heal within ten days, I need to hightail it to Seattle.

So far, so good; the beast has not returned.

Although I know that I will most likely be revisited by oral cancer, the experience changed my life. It woke me up to my mortality. It taught me to live every day with a sense of purpose — to pursue my dreams now, not later — and for that I am very grateful.

This post was written and submitted by Berlinda James. The article reflects the views of Berlinda James and not of CURE®. This is also not supposed to be intended as medical advice.

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I had what I thought was a canker sore that didn't heal. It ended up being cancer.

My Journey with Oral Cancer

Berlinda James

Upal Basu Roy is currently the senior director of LUNGevity Research at the LUNGevity Foundation. He holds a Ph.D. in molecular and cellular biology from the University of Arizona in Tucson and an M.P.H. in global health policy and management from New York University.

In his official capacity, he spearheads LUNGevity’s Translational Science Research Programs and its Patient-Focused Research Center. The research programs he develops and manages, such as Project Transform and Project PEER, focus on capturing the experience and perspective of patients with lung cancer in a way that will improve treatment and patient care for all lung cancer types. His LUNGevity work also includes overseeing its research awards program, participating in the Health Equity Council, guiding the scientific program of its International Lung Cancer Survivorship Conference, tracking developments in lung cancer care and translating new research into patient-friendly materials. He also provides patient perspective to government agencies, academia and industry, such as exploring ways to make clinical trials more accessible to a wider variety of patients.

In addition to an in-depth understanding of lung cancer science and research, Upal has a real heart for patients. He has generously given his personal as well as professional time to serve on an institutional review board, address disparities in cancer care, educate individual patients and help them navigate cancer drug access issues in other countries, and facilitate several patient-driven initiatives. For example, he helped create Project PRIORITY — a collaboration between LUNGevity Foundation and EGFR Resisters to capture the lived experience of patients who have EGFR-positive lung cancer — and analyzed data for presentations. Another example is helping the patient group ALK Positive develop their research grant awards process. Additionally, he served as a volunteer mentor for the new International Association for the Study of Lung Cancer’s Supportive Training for Advocates on Research and Science (STARS) program, which helps lung cancer advocates evolve into research advocates, and he developed a STARS training module for small cell lung cancer.

Most of Upal’s work happens behind the scenes and does not get the same visibility as aware- ness campaigns and policy advocacy. However, his work is essential for improving outcomes for all patients with lung cancer. He deserves the highest appreciation and recognition from the entire lung cancer community.

A woman writes about the unique lung cancer advocate who leads his endeavors with his heart for change.

Lung Cancer Research Advocacy Driven by Heart

Janet Freeman-Daily, M.S., ENG

Kathryn Chambers, M.S.N., AOCNP, is completely devoted and extremely well informed. She is knowledgeable, approachable and has a great deal of empathy and compassion. Katheryn is always available to help when needed. I have enormous amount of trust in her care.

Editor’s Note: This is an essay submitted by Leora Stewart for the 2021 Extraordinary Healer Award. 

 to read more about CURE®’s Extraordinary Healer® Award for Oncology Nursing event on April 30, 2021.

A knowledgeable and compassionate oncology nurse can make a huge different in a patient’s cancer treatment.

Incorporating Empathy and Compassion During Cancer Treatment

Leora Stewart

Mary Leslie Morgan, B.S.N., RN, OCN, and Anne Wiltshire, B.S.N., RN, OCN, from Maryland Oncology Hematology in Annapolis both exhibited high levels of efficiency, knowledge and compassion, especially during the unsettled time of a new practice.

Editor’s Note: This is an essay submitted by Cheryl Reiswerg for the 2021 Extraordinary Healer Award. 

One patient credits two oncology nurses for being knowledgeable and compassionate towards all patients they cared for especially during the establishment of a new oncology practice.

Effective Teamwork Shapes a New Oncology Practice

Cheryl Reiswerg

This post was written and submitted by Denise Sirchie. The article reflects the views of Sirchie and not of CURE®. This is also not supposed to be intended as medical advice.

When I had cancer for the third time, I spent afternoons resting in my room, watching and listening to the sounds of nature.

Overcoming Fear After Three Times With Cancer

Denise Sirchie

As surgeons, we tend to concentrate on patients with curable breast cancer and when faced with metastatic breast cancer, we typically step back and refer the patients to the medical oncologist.

Dr. Soran is one of the pioneers who decided to explore further the role of surgery in the treatment of patients with metastatic breast cancer. Maybe surgically removing the primary site of breast cancer could slow the disease and progression of the disease. For that reason, he embarked on a series of studies aiming to analyze this working theory.

In collaboration with a group of cancer specialists in Turkey and in the U.S., Dr. Soran enrolled 274 patients with metastatic breast cancer at presentation in a randomized trial, in which roughly half the patients underwent surgery to remove the site of primary disease followed by systemic therapy, and half were treated by standard systemic therapy with no surgery.

The study demonstrates that in a subgroup of patients with bone-only metastatic disease, which is associated with a longer life expectancy than visceral metastatic disease, the five-year median follow up was better after the primary site was removed surgically, confirming the working hypothesis. This is now one of the seminal studies quoted when surgery for metastatic disease is being considered.

As a result of this first study, the group led by Dr. Soran has now completed a second study, enrolling 505 patients with bone-only metastases and randomizing them to surgical removal of the local and regional disease (breast and lymph nodes) and systemic therapy before or after the surgery or systemic therapy with no surgery. The results confirmed again a better survival within the surgery group as early as after three years.

Finally, Dr. Soran has pioneered genomic analysis of metastatic breast cancer in order to potentially identify treatable mutations.

For his dedication to metastatic breast cancer from a surgical aspect, I believe that Dr. Soran is a hero well suited for this award.

A surgical oncologist honors an admirable doctor in the field who refuses to falter in the face of challenges in order to do exhaust every opportunity possible to improve the lives of patients with metastatic breast cancer.

A Pioneer of Metastatic Breast Cancer Research Who Never Gives up on Patients

Dr. Eli Avisar

We lived together a little while seemingly

The diagnosis was a proclamation of presence

but only that, like a sign posted on a pole I saw each day

Others saw the poster and shared stories of their lives

how a friend or relative survived or died in time

Listening to others, clarity approached that everyone

dies. Only the date and time is mostly not of our choosing

Many suggested a war time mentality to fight

but no one has any natural armor or weapons

Fighting became attending to the demands of others

coupled with prayer by myself and on my behalf

Since the watched clock never ceases, so it was with me

no time nor date of predicted ending ever came

After a long time we came to live together fighting, then

giving in to each other, sometimes a win sometimes a loss

My bucket list is finished and so I add items but mostly

I enjoy each day I have and suggest you do as well.

My mother was a 50-year breast cancer survivor.This poem is written from her point of view. She lived with the knowledge the cancer could return and it did after 50 years. She died after the second bout with breast cancer.

This post was written and submitted by Michael Owens. The article reflects the views of Owens and not of CURE®. This is also not supposed to be intended as medical advice.

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My mother was a 50-year breast cancer survivor, but the second bout was relentless.

Living With You, Breast Cancer

Michael Owens

June 24, 2004 is a day that is forever burned into my memory. I pulled into my driveway and opened my car door. My 11-year-old son was playing in the yard. When he saw my red eyes and the tears still trickling down my face, he asked "Did the baby die?!" He'd recently experienced the birth of a cousin. "No. I have leukemia." I blurted it out, just like that.

Of course, he didn't understand what leukemia was, and he only knew that cancer was bad. The family, including extended family, rallied into the den and we discussed what this diagnosis meant. We researched and cried and made plans to go to a major cancer center a few states away.

Believe it or not, 2004 was before Facebook was widely used. Social groups online were usually by email and daily digests. Early on, I subscribed to CURE® (Thank you, CURE®, for being free of cost to patients and caregivers.) The 

 is absolutely invaluable. I still share it with anyone I know who is newly diagnosed with cancer.)

Somehow, during my online research, I also ran across a group called Asian CML (chronic myeloid leukemia). It began as an Asian group, but by this time, it had expanded internationally.

I learned so much about my disease and received so much support from my fellow CML warriors who I connected with in this group. We shared information about how to interpret blood work and FISH/PCR reports and other tests. We shared how we managed side effects. We bolstered each other's spirits when someone was having a hard time. We cried in unison when we lost a fellow cancer warrior. We rejoiced when someone achieved remission. But most of all, I learned to live each and every day with gratitude.

I don't know if I would be living now with the appreciation for each day if I had never been diagnosed with cancer. I don't wish cancer on anyone, but if you are diagnosed with cancer, my suggestion is to look for support groups, either online or in person. Find one where you feel at home and feel supported. Let go of the little things, and may you find a reason for gratitude in each day.

This post was written and submitted by Libby

Cascaden. The article reflects the views of Cascaden and not of CURE®. This is also not supposed to be intended as medical advice.

When I was diagnosed with leukemia in 2004, it was before the days of social media. However, I still found an online support group that was very helpful. 

How I Found Cancer Support in the Days Before Social Media

Libby Cascaden

The moment you hear you have cancer. The moment you hear you have leukemia. The moment when you hear you have acute myeloid leukemia (AML). The moment you hear you may have mutations. The moment you hear you have the FLT3 mutation. The moment they tell you because you have x, y and that is why you are now a high-risk leukemia patient.

You begin to wonder; you desperately need to ponder: Have I done enough? Have I been a good daughter? Sister? Mother? Friend? Wife? Therapist, etc.? You feel the need to hurl yourself out of the past and into the present and run as fast as you can to get as much done before time runs out.

You privately vow to yourself you will do x, y and z and start on your bucket list while you are still here. The challenge is to select what is most important that is near and dear to your heart. That is where you must start. You may think it is a choice, but those moments will start to leak out of you when you least expect it.

The pivotal experience that shaped my perspective on life was while I was in the throes of induction chemo. It all was new and scary to me with so many new things to learn. The unease over if I ever get to do and say what I need to say was ever looming.

I didn’t really know how and when to start. It occurred to me it was the time when I was so weak and sick. I had been instructed that the three things I needed to do each day to have a chance of survival were:

I wanted to do everything they said I should do, so I did as I was told, 

I was too sick to eat, too weak to walk alone and too weak to bathe myself.

Without hesitation, my daughter was by my side each step of the way. She would get down to her underwear and sit on the shower bench and hold me up while she bathed my battle-worn body. When she returned me to my bed, I saw my daughter through the eyes of who I always hoped her to be. This compassionate act assured me I had raised a wonderful being in my daughter as well as in my son.

Prior to that, I was afraid they didn’t know how much I loved them. Did they love me? Did I do enough? That trepidation l had was lifted from my soul. I found peace in that moment. That was enough for me.

 lived long enough to see the life I prayed for. My children had become wonderful people, parents, partners and had learned all the right virtues I wanted to instill in them. They were kind, empathetic, compassionate beings who would pass these virtues on without me physically being here. I could relax now knowing that I had really done enough. I have lived a full life and I was able to witness that through the loving acts of my children.

And in that moment, I truly started living.

This post was written and submitted by Pam Wilson

. The article reflects the views of Wilson and not of CURE®. This is also not supposed to be intended as medical advice.

When eating, walking and bathing became difficult after cancer, my daughter stepped in. I was proud of who she had become. 

Cancer Helped Me See the Life I Prayed For

Pam Wilson

Today I poked at my brain. Well, first I watched the doctor poke at my brain on the computer screen.

“This isn’t pretty,” he said, pointing to a mysterious grey blotch nestled deep within the folds of my meninges. “See this area here? That’s new growth since your last scan.”

The digital scan alone was insufficient for the doctors to determine what the invading agent was. At first, he thought it was something benign that had been there since I was born. But now that we could witness its growth, the terrifying possibility that the leukemia had spread to my brain began to emerge.

All my medical records now bore the word 

urgent” printed in red ink. I sat there in shock, staring at the screen, wondering how this could be possible. “Fighting cancer is like fighting Mike Tyson,” my oncologist used to say. “Once we’ve got him on the ropes, don’t let up. C

 him under your feet before he can resurge.”

 it we did. Within the last three months alone, I have had three lumbar punctures, all of which required me to lie on my side at the edge of the narrow hospital bed, curled into a fetal position with a pillow between my knees. The doctor would then stab my lower back with a stainless-steel needle to inject chemotherapy drugs into my spinal canal. This was a gut-wrenching procedure that left me with a dull, agonizing headache for weeks. And yet, I grimly bore it, believing it was the cost of keeping the cancer at bay.

I wouldn’t pretend to be a stoic Spartan, plowing through this with a grin and a giggle. I worried. I cried. My mind raced at night, wondering if I would make it to another Christmas. 

, I thought to myself. We took every conceivable precaution, bombarding the disease with every weapon in the arsenal.

So how, despite all our overkill measures, did it still manage to turn feral and spread? 

Was it my diet that made the cancer aggressive? Maybe I hadn’t exercised or de-stressed enough to bolster my immune system. Or perhaps it was the air quality; ugh, I really shouldn’t have moved to New York.

I kept picking at these possibilities, grasping for reasons why this was happening to me rather than someone else. Isn’t that what we humans do: incessantly search for patterns, for narratives, for some greater significance in the randomness of existence? Lying on the grass, we gaze up at the drifting clouds and suddenly the leftmost one takes on the shape of a dolphin. We can make out the curved nose, the sleek body, and even the little tail fluke. It feels so real that you half expect it to whistle at you before dissipating back into cottony vapors.

Just like how we see familiar faces in the clouds or detect shapes among the scattered stars, we conjure up overly simplistic narratives to explain away the illogical misfortunes that befall us and others. It’s a coping mechanism of sorts, a way to rationalize the absurd and find comfort in the unknown. At the end of the day, the idea that the universe follows a fair and logical chain of causes and effects seems much more attractive than the alternative.

Unfortunately, there’s no rationale behind cancer. On my better days, you can’t even tell if there’s anything wrong just by looking at me. When steroids don’t disrupt my sleep schedule, when my pain is under control, when I feel strong enough to walk to the bathroom or open up my laptop and type these words, I almost feel like a reasonably healthy 20-year-old.

Passing me down the street, you would notice my brown waistcoat, Ray-Ban sunglasses and the winter blue beanie hat from Old Navy, which did its best to conceal the thinning hair on the back of my head

as, of course, there’re so many in this downtown area

Never would you have guessed that I was ill, or that I had dropped out of college a year ago to get treatment, or that I had just been pumped full of reddish chemical from a bag with a skull and crossbones emblem through a grafted plastic tube — a tube that had three bulbous lumens, a tube that protruded from beneath my collarbone and threaded its way into my heart’s veins.

It’s easy to forget that everyone is fighting their own onerous battles. Behind each indistinguishable face is a universe of lives, dreams, fears, heartbreaks and struggles that are invisible to the outside world. We put on our bravest faces and carry ourselves with as much flair and courage as we can muster. Hidden in plain sight, we’re all valiant warriors at heart.

This post was written and submitted Chaipat

Tirapongprasert. The article reflects the views of Tirapongprasert and not of CURE®. This is also not supposed to be intended as medical advice.

I kept picking at these possibilities, grasping for reasons why cancer  was happening to me rather than someone else.

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