BY SUZANNE LINDLEY | NOVEMBER 27, 2013
"Life is a series of disastrous moments, painful moments, unexpected moments, and things that will break your heart. In between those moments: that is when you savor, savor, savor." ~Sandra Bullock
As Thanksgiving approaches, I am pulling from the thoughts of Sandra Bullock because life this year has been a series of all these challenges and more. Yet, it has given way to much celebration. There has been disaster in ways that are hard to describe, the pain of my mom's cancer diagnosis and the fear that ensued, the unexpected blessing of stable scans for myself, and heartbreaking loss of friends that were dear.
Life can, and has, thrown some difficult hurdles in my direction. However, there has been a cadence to the way life works and it has been in the breathtaking moments when the world should stand still, with little or no control, that I have felt unknown strength and abundant blessings.
Most of these blessings that I so gratefully enjoy include the muchness of family, special milestones and everyday magic. These days are relished because of the treatments and medical team that have worked so hard to keep me here...and this year to even give me a new smile. I cherish my friendships, too, for it has often been the simple touch, cyber hug or powerful thought that has given me the courage and hope to move forward. So, as I savor the "cancer calm" in the storm of stable tumors, these are some of the lessons for which I am forever grateful.
1. "Love is the answer." Jane and AJ Ali
2. "You are where you want to be." Loretta Baker
3. "Life is a treasure chest. What is your treasure today?" Leon Davis
4. "The bumble bee isn't supposed to be able to fly, and you aren't supposed to survive. But the bumble bee flies and you WILL survive." Jean DiCarlo Wagner
5. "Take a deep breath." Jean DiCarlo Wagner
6. "Hope is dope!" Snoop Dog
7. "Instead of thinking "it could be worse," remember "it can get better!" Desiree Gray
8. "Everyone is terminal; no one more and no one less." Gordon Gwosdow
9. "The footprints of friends will carry you and you have one very special angel watching over you." Russ Howard
10. "Oh Happy Day!" Bonita Jones
11. "Cherish the golden gossamer threads of life." Shirley Laverne
12. "We can make it to the top. We are angels!" Kevin Lebret-White
13. "We are here for each other through good and bad." Vicki Lehman
14. "No one can take away your ability to have hope." Keith Lyons
15. "Life doesn't happen around you, it happens between your own two ears." Keith Lyons
16. "Life is the most precious thing we have." Dalia MacPhee
17. "Hold fast and shine brightly." Brian McLeod
18. "Life is fabulous!" Erica Paul
19. "Talk doesn't cook rice." An old Chinese proverb I first heard from Nancy Roach
20. "If you go outside the box and open up yourself to new experiences, joy is there for the taking." Pam Schmid
21. "We have been blessed to know things others don't yet understand, and our challenge is a great one: We understand our mortality, and we revel in the blessing of every breath we draw and every day we see. Our job is to bring a little heaven to earth, in the form of faith and love." Tony Snow
22. "It's all about hope." Tami Thennis
23. "Find some hope." Shelly Weiler
24. Last but not least, Ronnie Lindley: "It will be OK!"
I am humbled by the rhythm of life; how it ebbs and flows. I am thankful for ALL of you that walk with me through the tragedies and triumphs of each day. You are treasured souls who have shown me that beauty often lies in the midst of struggle. You have helped me to strengthen my resolve. So as you enjoy the days and weeks to come with family and friends, however and wherever that may be; know that I am grateful for you. Happy Thanksgiving from our home to yours.
And with the words of Sandra Bullock, "Savor, savor, savor!"RELATED POSTS
BY SUZANNE LINDLEY | OCTOBER 2, 2013
This blog is almost too painful to write; it is one that is full of friendship and wonderful memories, of hope and inspiration, but that also ends in the deep sorrow of loss. Colon cancer brought our friendship together and has now torn it apart. If you read this, please know that colon cancer is preventable. Know your family history, learn about the warning signs; get a colonoscopy.
Four years ... they drag by and speed away like only time has a way of doing. I've met a lot of friends in that time and experienced a lot of wonder. I've also lost friends, too, and felt the emptiness and heartache that ensues for the days, weeks and months afterward. In living fully with metastatic cancer, I've tried to keep the reality of mortality in check and at the same time tucked in the shadow of living.
I met Jennifer Lebret-White four years ago through Imerman Angels and from there our friendship blossomed. Our first phone conversation was one that I will never forget. Her strength was evident as she talked about her husband, Kevin, and his already six-year-long battle with stage 4 colon cancer. She proudly described their two young daughters.
I immediately was taken back to my own diagnosis and the fear of not watching my daughters grow up. Not long after, I started emailing and talking to Kevin, too, and he quickly became MY angel. I knew how lucky I was to have these two angels as friends. Kevin had been a tough marine turned elementary school teacher. Both personas were exemplified in his cancer fight, and when we talked I often heard the tough and determined mixed with the gentle and caring. We met for the first time on Texas soil just before a Dallas Cowboys football game in late 2010. The Cowboys were a mutual infatuation for us even though Kevin lived in Washington!
Months later he and Jen came to The Liver Symposium in Dallas and we rode in NASCARs side by side. I remember looking out the speeding car window and the grin on his face as his car surged slightly ahead of mine. We later found roses that were left behind from a wedding and together we used the petals to write HOPE across the hotel lawn. We talked about life, our kids, the burden we were placing on our spouses, our love and admiration for them, our hopes, plans, dreams, goals and even our deaths. I told him I hoped to know when to let go and how to die peacefully. He told me he wanted to go out fighting. We both agreed that neither of us wanted it to happen any time soon.
In February 2011, we marched the halls of Capitol Hill together and he and Jen wrote HOPE in the Capitol sand. When we held a liver seminar in Spokane later that same year, his representative's legislative assistant was there to welcome the crowd. We visited the river where Kevin canoed, and I marveled at the daring adventure that would be. Then we walked quietly through the park, and I snapped pictures as Kevin, Jen and the girls wrote HOPE in the playground sand. Life seemed so right.
Then just before Christmas, Jen called to tell me he had been admitted to the hospital and had an infection. He was sick; very sick. She was told he wouldn't make it to see Christmas. He did. And he made it clear that no one should make predictions about his life expectancy ever again. He rallied. He inspired.
I got to see both Kevin and Jen in Colorado for another liver cancer seminar and then as the summer of 2012 dawned, Kevin was making his way through Texas for Cowboys training camp. We met him in San Antonio and he came camping with my family. We climbed to the top of Ol' Baldy and put cancer firmly in it's place; writing HOPE in rocks on the mountaintop. Kevin came home with us and joined in the chaotic comforts of our home. He wasn't feeling well by the end of the trip and was fatigued and chilled. He was admitted to the hospital as soon as he returned home. Again, he rallied back.
Just this past February he flew to New York City and modeled during NYC Fashion Week. He shared his story and rocked the house. He also made even more new friends and touched the hearts of everyone he met. We took pictures along the streets of New York. He went with friends to Ground Zero.
We talked about the next time we would meet and as his tumors quickly became more aggressive, there was a great deal of hope put into that plan. Time became more precious. I kept hoping; believing that once again Kevin would rally back and even as Jen shared that times were getting tough, I believed that once again he would be OK. I wanted to believe that. Perhaps I needed to believe that. I was sure he would make it through Christmas.
We shared sporadic IM's through AOL. Sometimes I couldn't understand them. Sometimes they seemed all right. Jen messaged a few times that he was awake and that I could call. I tried to capture his voice in my memory, afraid that each time we talked it might be the last. I ended every conversation with "I love you" and our last phone call was no different. How fortunate to have Kevin and his family in my life... four amazing, incredible years of friendship.
Kevin died September 11, 2013 at 9:11 a.m. He leaves behind his beautiful wife, Jen, their two adorable daughters, Natalie and Hailey, loving family members and an army of friends around the globe.
Suzanne Lindley has been living with metastatic colorectal cancer since 1998. She is the founder of YES! Beat Liver Tumors, an organization for individuals living with metastatic liver tumors, and an advocate for Fight Colorectal Cancer.RELATED POSTS
BY SUZANNE LINDLEY | SEPTEMBER 17, 2013
Fifteen precarious, yet wondrous, years have passed since my diagnosis of stage 4 colon cancer. Today marks a decade and a half of triumphs that have woven their way through the trials and tribulations of living with cancer. While this insidious disease unraveled the spool of time, life and family somehow managed to spin continuously forward. Our older daughters magically grew into adulthood and our youngest transformed into a kindergartner. Ronnie and I have become an integral part of each other, seemingly inhaling and exhaling in unison.
The early years of cancer were defined by struggle and fear, the beginning of treatment, the reality of my impending mortality. Every minute became precious. As the plethora of research and new treatments added to my longevity; goals were reached and new dreams added. One available chemotherapy treatment morphed into eight more. Add in a few clinical trials, routine scans, a bit of radiation, several targeted therapies and somehow, despite the terrible odds, we survived.
Because of these years with cancer our lives opened up to often unimaginable opportunities...to time that was not thought possible when I was first diagnosed. Days turned into weeks, then months, and years of savoring time, fulfilling dreams, treasuring family, and embracing hope. Birthdays, anniversaries, holidays, vacations, and even the dawn of another day are cherished.
Cancer has given us the opportunity to hold tight this marvelous life with enhanced senses...that only those of us living with the reality of finality know and understand--that is the blessing and the curse of cancer!
Through trying times, challenging decisions and moments filled with fear we have prevailed. This past year, I've told my story time and again. From Texas to New York, from the halls of Congress to the red carpet of the Emmys, I've shared that it is possible to live fully in spite of terminal cancer. I've made new friends, cherished old friends and lost dear friends. I've watched proudly as Katie opened her business, cheered loudly as Karlie started her last year of college, and shed tears of joy as I walked Chloe into kindergarten. I've held Ronnie's hand a little tighter and taken full advantage of the wonderful gift of NOW.
The words of Tony Snow have never held more truth:
"The challenges that make our hearts leap and stomachs churn invariably strengthen our faith and grant measures of wisdom and joy we would not experience otherwise."
As my anniversary comes to a close, I am grateful for another day of celebration. My wish for you and yours is the stomach churning, leaping heart feeling of wisdom and joy that is held within every heartbeat.May you realize that every day is a special day. Celebrate today!RELATED POSTS
BY KATHY LATOUR | AUGUST 6, 2013
I talked to my friend Suzanne Lindley this week to congratulate her on yet another year of living with metastatic colon cancer and advocating for others who have liver issues. Suzanne was featured in the Summer, 2010 issue in a story about living with metastatic disease.
Diagnosed at age 31 in 1998, Lindley has long outlived her prognosis. I am always amazed by people, like Suzanne, who spend every waking moment helping others when they are going through chemo and dealing with their own disease. This includes Suzanne, who was told she had six months to live, but continues on and on. Not that it has been easy. Chemotherapy after chemotherapy, radiation, radioemolization, Suzanne has done them all.
But she still found time to found a group to help those facing liver mets called YES.
She and her husband Ronnie decided to move to a small town shortly after she was diagnosed because, she decided, if she only had six months left she wanted to be in the country with her horses and where her girls could make memories for after she was gone.
Well, today, her girls are grown. They are still close because this is a family that stays close, and besides, the girls, Karlie and Katie, want to be around to help with their little sister Chloe, who Suzanne and Ronnie adopted a few years ago. They had provided a home for Chloe when she was a baby and, well, it was just the thing to do when Chloe needed a full-time, forever home.
Suzanne has taken the summer off from traveling around the world educating patients about the options when they have liver involvement. She went to Disneyland with her mom, and 13 other family members (From CancerLand to DisneyLand). They had fun, which everyone needed. Especially Suzanne.
Ronnie and Suzanne Lindley at the beach showing off a new version of her favorite word, "HOPE."
2013 has been a tough year for her. Her mom went through breast cancer, and she has seen too many close friends face new challenges in their struggle. She works with patients, now friends,from around the country on finding the latest treatment to stay alive. During our phone call, I heard, You've got Mail no less than 15 times.
They will all hear back from her with ideas for another treatment or another story of another patient who thought it was the end.
Or she will just call to give them a bright moment of caring from someone who has definitely been there.
Suzanne was 31 when she was given six months to live. Now she is 46 and holding on. The woman who hid in the bathroom on her first visit to Capitol Hill for a policy day with LiveSTRONG now speaks to hundreds at a time.
It reminds me of the T-shirt that says: God never gives us more than we can handle, and I am so far behind, I will never die.
BY ELIZABETH WHITTINGTON | JUNE 2, 2013
In the FIRE-3 study, Erbitux (cetuximab) came out ahead in overall survival when compared with Avastin (bevacizumab) when treating patients with newly diagnosed metastatic colorectal cancer. However, the end result was that the overall response rate (ORR), which was the main focus of the study, was similar in both arms, which leads experts wondering what to make of the results.
Nearly 600 patients were given either drug with the chemotherapy regimen FOLFIRI. ORR in patients was comparable, as was progression-free survival at around 10 months. Overall survival was 28.7 months in the Erbitux arm compared with 25 months with Avastin. (Abstract #3506.) Expert discussion after the presentation hypothesized that because more patients dropped out of the Erbitux arm for some reason may have skewed the results just a touch. There's also the possibilities that progression-free survival and overall survival, which researchers have assumed correlated in the past, may not in certain targeted therapies. That would certainly change the outlook on trial designs for the future.
In any case, Richard M. Goldberg, physician-in-chief at The Ohio State University Comprehensive Cancer Center, said he would feel comfortable using either drug, and if you use Erbitux first, it leaves Avastin as a valid option for second-line therapy. He also encouraged the researchers to examine the later therapies the patients received to help make sense of the data. That analysis will be presented at a later meeting this year.
The two targeted therapies work differently as Erbitux inhibits a pathway that contributes to cancer cell growth, while Avastin halts blood vessel growth to the tumor. All patients were confirmed not to have a KRAS mutation in their tumor--KRAS mutation-positive cancers do not respond to EGFR-targeted agents such as Erbitux. Side effects were common in both groups, including neutropenia, diarrhea, nausea and fatigue. Patients in the Erbitux arm experienced more skin-related effects.
Experts noted the drugs are also being studied in combination with FOLFOX, a more common chemotherapy regimen in the U.S. Results of that trial will be available at the end of the year, and may provide physicians more answers into when to use these targeted drugs.RELATED POSTS
BY KATHY LATOUR | APRIL 19, 2013
It's hard to imagine that someone who has been through cancer would have to worry about dying of cardiac disease, but according to a new study, long-term cancer survivors have more risk factors for cardiovascular disease than those who have not had cancer.
The 1,582 survivors of breast, prostate, colorectal and gynecologic cancers who were studied came from two California cancer registries who were recruited from four to 14 years past treatment.
Once accepted into the study, the survivors were sent a survey that asked them to self report about a number of cardiovascular disease (CVD) risk factors, including smoking, body mass index, physical inactivity, cholesterol, hypertension and diabetes. It also asked whether the survivor had discussed these factors and living a healthier lifestyle with their health care providers.
The results are rather astounding. Except for smoking, risk factors for cardiovascular disease were more common among survivors than the general public: 62 percent were overweight or obese, 55 percent had hypertension, 20 percent were diabetic, and 18 percent described themselves as inactive. Five percent said they smoked. Hispanic and African-American survivors had a greater number of CVD risk factors, particularly obesity and diabetes.
One third said they had not discussed their cardiovascular factors with their physicians.
This study points again to the importance of primary care physicians understanding the cancer history of their patients, and cancer patients understanding their susceptibility to cardiovascular disease.
We continue to focus on the need for patients to leave treatment with the understanding that their lives will be different because of their cancer therapy, particularly if they have had radiation and chemotherapy, both of which can impact their heart.
Take charge of your future. Get a survivorship care plan for your future. Stop smoking, start moving and begin eating for your health. You have a number of years ahead of you if you do.
You can read more from my CURE article on the subject: "Planning for Cancer Survivorship."RELATED POSTS
BY SUZANNE LINDLEY | MARCH 19, 2013
Colon cancer takes me to Washington, D.C. each year to spread awareness with Fight Colorectal Cancer about a disease that is "preventable, treatable and beatable." I've stepped outside of my comfort zone and shared a very private story so that future generations are able to talk about colorectal cancer in past tense. I make this trip so that my children and their children will one day live in a world without colorectal cancer.
For seven years, I've climbed the steps of the Capitol armed with the knowledge that cancer research has allowed me to open these legislative doors. I have not taken for granted the opportunity to march down these grand hallways in quest of more funding for cancer research. I've shared my story time and again; thankful for the research that has brought me to these halls and given me the ability to spend precious and tender moments with my family and friends.
Staying a step ahead of metastatic colon cancer isn't an easy task. The novelty of living with dying has long worn off. It's something now that is as much a part of my life as is taking another breath and in order for that to continue for me, and 1 million other Americans, more research is needed. Prevention is key. I should be on Capitol Hill this week, but the very disease that takes me there is now keeping me at home. Still, colon cancer won't weaken my voice.
Join me and Fight Colorectal Cancer tomorrow (Wednesday, March 20) and CALL on Congress! Your call will coincide with visits by colorectal cancer survivors meeting face-to-face with members of Congress. Make the call! Advocacy is at your fingertips.
Call on Congress: 866-615-3375
Tell your member of Congress you support:
A bill in Congress that will cut out copays for screening colonoscopies when polyps are removed. Your call could make screening colonoscopy affordable for millions.
Get behind a cure!RELATED POSTS
BY SUZANNE LINDLEY | MARCH 8, 2013
In February, I helped to host a survivor fashion show to create awareness about living with liver tumors. Among those who modeled were a number of stage 4 colon cancer survivors. Shocking to many were the young ages of our survivors. Out of the nine colon cancer survivors that participated, EIGHT were diagnosed before age 50! Even more notable is the fact that four of us have lived with metastatic disease for more than eight years! The ages are sobering; the longevity exciting!
It has been 14 years since my diagnosis with colon cancer, and I'm thankful to see the progress. Way back when we talked about survival of stage 4 colon cancer in months, not years! How things have changed! In the early days of my diagnosis it took a great deal of courage to say "colon" in anything other than a hushed voice.
In the years since, we've made great progress thanks to ACOR (ACOR.org), Chris 4 Life (chris4life.org), Colon Cancer Alliance (ccalliance.org), COLONTOWN (facebook.com/colontown), and Fight Colorectal Cancer (fightcolorectalcancer.org) ... among others. Advocates have shared their stories and offered support, taken their voices to Capitol Hill (Call on Congress with Fight Colorectal Cancer is just around the corner!), and created awareness programs that are truly making colon cancer preventable, treatable and beatable!Research has paved the way for numerous novel treatments and procedures.
What was dealt to me as a death sentence can often be managed as a chronic disease. For some that have seen their disease spread it is even possible to downstage to NED, or no evidence of disease. We are able to live longer and better in spite of advanced cancer.
I have benefited from the research and advocacy these past 14 years. The much needed momentum has provided time, options and hope for cancer patients everywhere. For others, awareness has prevented colon cancer. Be a part of the momentum for colorectal cancer. You can make a difference in the fight by joining Fight Colorectal Cancer's "One Million Strong." Visit the ONE MILLION STRONG TOOLBOX as a guide for how you can be involved in the fight against colorectal cancer.
We are stronger together! One million strong!RELATED POSTS
BY LINDSAY RAY | JANUARY 31, 2013
On Jan. 23, the FDA approved another version of second-line therapy for treating patients with metastatic colorectal cancer. Avastin was first approved for use as a first-line therapy in colorectal cancer in 2004, and Avastin with 5-FU based-chemotherapy was approved as a second-line option in 2006. This most recent indication allows Avastin (bevacizumab) to be used as a second-line therapy in conjunction with fluoropyrimidine-combination chemotherapy and either irinotecan or oxaliplatin. Fluoropyrimidines include Xeloda (capecitabine) and floxuridine, as well as 5-FU (fluorouracil). Avastin cannot be used as adjuvant therapy (additional treatment after the primary therapy).
Approval is based on a phase 3 trial with 820 patients with metastatic colorectal cancer who had progressed during or following treatment with Avastin-based chemotherapy. Patients were randomly assigned to "cross-over" chemotherapy plus Avastin or cross-over chemo alone. (Cross-over chemotherapy means that patients who had previously been treated with oxaliplatin-based chemo received irinotecan-based chemo in the study, and vice versa.)
Patients in the Avastin arm had a median overall survival of 11.2 months compared with 9.8 months for those in the chemotherapy-only arm. Progression-free survival was also improved by a median of 1.7 months for those in the Avastin arm.
The side effects in this study were similar to those seen in previous studies, which include fatigue, diarrhea and mouth sores.
Avastin can cost $88,000 per year and is also approved for treating advanced renal cell carcinoma, glioblastoma and non-squamous, non-small cell lung cancer.
For more information, visit avastin.com or call 877-428-2784.RELATED POSTS
BY ELIZABETH WHITTINGTON | JANUARY 8, 2013
Colonoscopies 58% : Congress 31%
That's the favorability rating people gave when given a choice between the two, along with other non-desirables at the moment, which also included cockroaches and root canals.
Public Policy Polling does favorability surveys to see how the public views Congress. This year the institution decided to compare it with other things to give people a better understanding of the poll.
"Colonoscopies are not a terribly pleasant experience but at least they have some redeeming value that most voters aren't seeing in Congress: Colonoscopies 58 Congress 31"
Or as one of my tweeps noted: "Sure. Colonoscopies are useful. RT @hillhealthwatch: Congress less popular than colonoscopies, root canals, poll finds"
You can read the full results here if you're interested.
While this may look bad for Congress, maybe colonoscopies are being seen in a better light. Incidence and mortality related to colorectal cancer have decreased in the past decade, and much of that can be credited to colon cancer screening, including colonoscopies.
Percentage of Adults Aged 50–75 Years Who Reported Being Up-to-Date with Colorectal Test Screening, by State; Behavioral Risk Factor Surveillance System, United States, 2010
We've gone from the Katie Couric Effect to it being a milestone of turning 50, a "colonoscopy getaway" that was featured on "Men of a Certain Age."RELATED POSTS