BY GUEST BLOGGER | DECEMBER 3, 2013
November was an exciting month for nurses conducting research in the area of cognitive changes related to cancer and cancer treatment.
Many of us were fortunate to attend the Oncology Nursing Society Connections conference in Dallas, where we had the opportunity to share research results and discuss future research projects dedicated to learning more about the cognitive changes that some cancer survivors experience. Additionally, the November issue of the Seminars in Oncology Nursing journal was devoted to "Cognitive Changes Associated with Cancer and Cancer Treatment."
"Chemobrain" and cognitive changes due to cancer and other related treatments pose a challenge to many survivors of cancer. Incidence estimates for cancer-related cognitive changes range from 75 to 90 percent of survivors at some point prior to, during or following treatment.
Around 25 percent of survivors struggle with long-term cognitive effects. Survivors describe the experience of these cognitive changes to include issues such as difficulty with word finding, misplacing things such as keys and cell phones, forgetting why they walked into a room, missing appointments and trouble multitasking. Results from neuro-psychologic tests have shown decreases in processing speed, memory and executive function (the ability to plan out and complete the steps necessary to accomplish a goal). All of these issues cause frustration and can decrease survivors' quality of life.
A great deal of research is being conducted to better understand the causes of these cognitive changes so that preventive strategies and interventions can be developed. Many different theories are being explored such as injury to neural progenitor cells (stem cells that give rise to mature brain cells), changes to DNA-repair genes, accelerated aging of the brain, and genetic pre-disposal to central nervous system injury. Results of studies that include the use of functional magnetic resonance imaging (MRI) and memory testing are demonstrating changes in brain volume and activation.
Additionally, exciting research is being conducted to explore interventions to reduce cognitive injury and/or improve cognitive function. Some interesting results are being seen in the areas of cognitive behavioral training and exercise.
Cognitive Behavioral Training includes exercises to assist with memory and processing speed as well as recommendations for strategies to accommodate for changes in cognitive function. Exercise studies to date have included yoga, Tai Chi, Qigong, aerobic exercise and resistance training. More research needs to be conducted to support the widespread use of these interventions, but these early results are encouraging. Additional results will be presented at the upcoming 2014 International Cancer and Cognition Task Force (ICCTF) Cancer and Cognition Conference to be held in Seattle next February. The Task Force is comprised of oncologists, radiologists, nurses, basic scientists and other disciplines all dedicated to finding solutions to the problem of cancer-related cognitive changes.
One study is currently being conducted to learn more about factors that may predict many of the symptoms associated with breast cancer prior to, during and following chemotherapy (including cognitive changes). Women with breast cancer are being asked to complete a confidential online questionnaire. If you or someone you know are newly diagnosed and have not yet received chemotherapy, or if chemotherapy was completed two or more years ago, please consider helping us learn more about predictive factors by completing the study questionnaire.
Jamie Myers, PhD, RN, AOCNS, is adjunct assistant professor at the University of Kansas School of Nursing and nurse researcher consultant for Carondelet Health in Kansas City. She also is the coordinator-elect for the Oncology Nursing Society Survivorship, Quality of Life, and Rehabilitation Special Interest Group.
To participate in the clinical study mentioned above, go to https://survey.kumc.edu/se.ashx?s=5A1E27D26B60E80F. Participants will be offered the opportunity to receive the study results. If you have questions about the study or would prefer to receive a hard copy questionnaire you can contact Jamie at firstname.lastname@example.org or 913-449-5996.RELATED POSTS
BY GUEST BLOGGER | NOVEMBER 19, 2013
It can be difficult for me to see all the way to 2022. Like so many diagnosed with lung cancer, I have to take things one day at a time. I was diagnosed fewer than two years ago, and I finished chemotherapy in June 2012.
And yet the National Lung Cancer Partnership's vision to double lung cancer survival by 2022 creates a new way to look to the future, adding an extra sense of purpose every day to my support of the lung cancer movement. I am certain that when survival statistics rise, public awareness and research funding will rise with them.
I found out I had lung cancer on February 9, 2012, during an afternoon I should have spent teaching my sweet third grade students. Instead, my family and I gathered together to hear a doctor share the results of a biopsy. I remember watching the doctor as he strung together a series of words; "tumor is malignant... found this late... talk to an oncologist."
The magnitude of those words was life altering. I was 29 years old. How could this have happened to me?
As the reality of living with lung cancer began to settle in, it became a part of my new life. But it was not a one-way relationship. I realized that lung cancer needs a face, a strong voice and above all, the research necessary to find cures.
I am not naïve about what it will take to get us there. So, barely two months after my diagnosis, I began my journey as a fundraiser for the 2012 Free to Breathe Dallas/Fort Worth Run/Walk. I was in the middle of chemotherapy and I had just a month before the event, but I raised over $10,000 for lung cancer research and patient programs. Suddenly, I had a new mission in life.
Looking to keep the momentum going, I attended the Partnership's 2012 Lung Cancer Advocacy Summit and continued my fundraising efforts in 2013. To date, I've already raised over $40,000.
Ultimately, I want to help researchers find more cures for lung cancer, and doubling survival is an important step on that journey. As a survivor who has tested positive for two genetic mutations, I know how much scientific progress is being made on the molecular level. With so much happening on the research front, it's meaningful to me that the Partnership recognizes that research, molecular tumor testing, clinical trials and patient education are the future of survival.
My personal goal for 2022 is simple: I would like to be alive. One day at a time, I am building toward that goal.
My most recent CT scan showed no signs of cancer. My fundraising totals continue to grow. Together, I know we will beat this disease. Together, we will double lung cancer survival, and we will continue working until a cure is available to everyone.
Cassie Gilmore is a lung cancer survivor in the Dallas/Fort Worth area of Texas. You can read more about the National Lung Cancer Partnership's goal to double the five-year lung cancer survival rate by 2022 at nationallungcancerpartnership.org/vision.RELATED POSTS
BY GUEST BLOGGER | NOVEMBER 13, 2013
I am the four percent!
Only four percent of stage 4 stomach cancer patients survive five years after diagnosis. It has now been five and a half years since I was told that I had stage 4 incurable stomach (gastric) cancer.
At the time of my diagnosis I was 40, the mother of three young children, married to a physician and a practicing attorney with my own firm. I was healthy, ate salad and broccoli every day, didn't smoke or drink, exercised, took my vitamins and had no family history of cancer. I had no risk factors for stomach cancer at all.
Suddenly, I was told that I only had a few weeks to live. My 3-year-old daughter would not remember me. My 10-year-old twins would go through their teenage years without a mother. However, I repeated a line from my favorite Dylan Thomas poem that "I will not go gently into that good night," and I began the fight of my life. I immediately underwent very harsh chemotherapy treatments and spent years in bed, hospitals and doctors' offices.
Soon after I started my chemo, I began speaking with other stomach cancer patients because I refused to be just another statistic, and work needed to be done to raise awareness, fund research and support patients, families and caregivers. I started activities to raise funds for stomach cancer research; then it became apparent that there was a great need for resources for patients, families and caregivers all over the world. This was the beginning of Debbie's Dream Foundation: Curing Stomach Cancer which was the first organization dedicated to helping stomach cancer patients, raising money for research and educating the public about stomach cancer.
Just to put this disease in perspective, stomach cancer is the second leading cause of cancer death in men and fourth among women worldwide. Each year nearly 930,000 people worldwide are diagnosed with stomach cancer, and approximately 700,000 die of the disease. Approximately 22,000 Americans will be diagnosed with stomach cancer each year, and over 10,000 will die within a year. According to the American Cancer Society, the overall 5-year survival rate for people with stomach cancer in the United States is about 28 percent, and the 5-year survival rate for stage 4 stomach cancer is 4 percent. Per cancer death, stomach cancer receives the least amount of federal funding of any cancer.
In parts of Asia where gastric cancer is highly prevalent, aggressive screening programs have had some success in detecting stomach cancer early and thereby improving the outcomes; but in the United States there are no effective screening methods and no established programs for prevention or early detection. In addition, the symptoms of stomach cancer are not specific and are common to many gastric problems such as ulcers and gastritis. They include abdominal discomfort, indigestion, loss of appetite, occasional vomiting and a feeling of fullness after eating small amounts of food.
Awareness of gastric cancer, its symptoms and risk factors remains low despite the fact that it is one of the deadliest cancers and the number two cancer killer in the world. Physician and public awareness are critical for early diagnosis. If people are aware of the risk factors and symptoms, they can be diagnosed at an early stage, dramatically increasing the chance for a cure. Two precursors to stomach and esophageal cancers are H. pylori and acid reflux, so be on the lookout. Bottom line: If you are having any type of gastrointestinal symptoms go see your physician for evaluation.
As part of our efforts at Debbie's Dream Foundation: Curing Stomach Cancer, we are celebrating November as Curing Stomach Cancer Month. There are many awareness months in the United States; however, we are taking our efforts and message one step further because most Americans are diagnosed in late stages, so awareness isn't always the answer. We are emphasizing that curing stomach cancer is the end goal for patients, and therefore we have many activities planned for November to help and support patients but to also look toward a brighter future when a cure is found for stomach cancer.
So, how am I doing now? Most days are great except, in order to keep my cancer at bay, I still have Herceptin infusions in the hospital every three weeks, take the oral chemotherapy drug Tykerb nightly, have regular doctor visits and undergo lots of scans and tests. I have a steadfast healthcare team and unwavering support from friends and family. They are with me in my journey to make a difference.
I am beating the odds and determined to continue doing that. My pursuit is to make the cure for stomach cancer a reality for everyone; it's my dream, my personal mission and my legacy. All people should have the right to early detection, intervention and reliable treatment and to hope for a cure for their disease. Our health routine should include endoscopy exams and other screening techniques, increased resources, proven treatments and eventually the resources to find a cure. No one should have to fight this disease alone or without appropriate options. We at Debbie's Dream Foundation: Curing Stomach Cancer are making sure of that!
To join me in making the dream for stomach cancer a reality, take part in our Curing Stomach Cancer Month events.
Debbie Zelman is a Stage IV stomach cancer survivor and founder of Debbie's Dream Foundation: Curing Stomach Cancer (DDF), a non-profit organization dedicated to raising awareness about stomach cancer, advancing funding for research and providing education and support internationally to patients, families and caregivers. DDF seeks as its ultimate goal to make the cure for stomach cancer a reality. If you or someone you know is battling stomach cancer, you can find more information at DebbiesDream.org or by calling toll-free at 855-475-1200 or email to Info@DebbiesDream.org.RELATED POSTS
BY GUEST BLOGGER | NOVEMBER 12, 2013
With limited treatment options and no cure, brain cancer is one of the science and medical world's hardest nuts to crack.
The most common and deadliest form of brain cancer is glioblastoma multiforme, or GBM for short. This particular cancer has for decades resisted the efforts of the best in the biomedical research community, who are always looking for better treatment options for patients.
These efforts include the National Institutes of Health's The Cancer Genome Atlas (TCGA) project, which in 2006 chose GBM as the first tumor to sequence and analyze to better understand the disease. The brain tumor community's successful push to make GBM one of the main focuses of the TCGA was due in large part to the unfortunate fact that there has been little progress in the fight against this tumor over the past three decades; a result of the complexity and aggressiveness of this particular form of brain cancer.
GBM tumors are highly heterogeneous with multiple subtypes, and often a multitude of different mutations and cell types within a single tumor. In addition, the cancerous cells frequently invade other healthy tissue throughout the brain, further illustrating their aggressive nature. Consequently, survival statistics for this patient population are staggeringly low.
And, while the TCGA GBM project netted volumes of important information and data, the big payout for patient care that is desperately needed has yet to materialize.
As a long-time strategic adviser to the National Brain Tumor Society, I joined the organization's executive team, program staff and board of directors, along with other strategic, scientific and medical peers to analyze the current landscape and pinpoint why progress was not happening despite this attention. As a result of these discussions, National Brain Tumor Society created the Defeat GBM Research Collaborative earlier this year.
Defeat GBM is a strategic research initiative, created as a subsidiary of the National Brain Tumor Society, and aims to double the five-year survival rate of GBM patients in five years. To achieve this goal, the initiative will connect leading brain tumor researchers from top cancer institutions, including MD Anderson Cancer Center, Ludwig Institute for Cancer Research and Memorial Sloan-Kettering Cancer Center, in a full-force effort to significantly impact patients through better collaboration, data sharing and a unique scientific plan designed to speed progress.
I was honored to be selected as the scientific director of this initiative to lead a Strategic Scientific Advisory Council (SSAC), comprised of many of the top minds in brain cancer research. Together we will oversee this effort, including charting the direction of Defeat GBM research, reviewing project progress, as well as ensuring investigator teams are working in synergy and achieving key milestones and annual goals.
Defeat GBM was built around the idea of creating a new funding and research model for brain cancer, one which breaks the traditional paradigm of funding single research projects with individual goals and independent aims. Utilizing deep-funding, comprehensive and rigorous contracts with partner organizations, and bringing together researchers that already have a history of collaborating together as the core of the initiative, the Defeat GBM construct is coordinated to rapidly move progress through the initial four complementary projects (within the initiative) that span the drug development pipeline from basic discovery science, through to translational research and pre-clinical drug development, all the way to improving clinical trial design.
If we succeed, we'll be able to quicken the pace of discovery of the right targets, transfer that knowledge to deliver the right drugs to the right subsets of patients, and reach our goal of improving overall survival rates. In addition, we would have achieved this progress in less time and with less financial burden than historically has been the case for brain cancer research and drug development.
Parallel to our Initiative, other exciting efforts combating GBM are happening across the country, which are contributing to the overall knowledge base and field of brain tumor research. For example, a second phase, so-to-speak, of the GBM TCGA project just unveiled its findings this past month (read "The Cancer Genome Atlas exposes more secrets of lethal brain tumor"). The information from this study could provide invaluable information on the genomic alterations that drive GBM tumors and potential targeted therapies. At the same time, exciting efforts are happening in the development of innovative immunotherapies to treat GBM tumors from a number of different researchers and institutions.
Defeat GBM is our contribution to the field. And for those of us involved, an effort to create a collective brain to battle this terrible disease in ways that we have not yet been able to do as individual researchers or institutions. The brain tumor community deserves this concentrated, comprehensive effort, as well as a greater hope for better treatments, and one day, a cure.
W.K. Alfred Yung is the chair of the department of neuro-oncology, co-director of the Brain Tumor Center, Margaret and Ben Love Chair of Clinical Cancer Care, and professor of Neuro-Oncology and Cancer Biology at The University of Texas MD Anderson Cancer Center. He is also a strategic adviser to the National Brain Tumor Society and the Scientific Director of the Defeat GBM Research Collaborative (a subsidiary of the National Brain Tumor Society), as well as the editor-in-chief of the journal Neuro-Oncology and co-chair of the NCI Brain Malignancy Steering Committee.RELATED POSTS
BY GUEST BLOGGER | OCTOBER 31, 2013
Dig out your "Save the Boobies" button, "Real Men Wear Pink" t-shirt and pink ribbon yard stake – it's Pinktober! Unless you've been living under a rock since the first Susan G. Komen for the Cure® (then the Susan G. Komen Foundation) event in 1982, you know October is Breast Cancer Awareness Month.
When I was first diagnosed with breast cancer, joining the pink sea of survivors at Race for the Cure was uplifting and unforgettable. With four rounds of chemo down and two more to go, I held my bald head high as I struggled to walk a mile, arm in arm with my family and friends. Two years later, Mom and I proudly walked 60 miles to cross the finish line at the Susan G. Komen 3-Day for the Cure.
Celebrating as a survivor helped put cancer behind me. Been there, done that. I had survived cancer, and I was moving on with my life. Embracing the "breast cancer survivor" label gave me an excuse to shop for hot pink, this time with a percentage of my purchase benefiting a breast cancer charity.
When we found out last year my breast cancer had returned in my lungs, liver and bones, the same label that comforted me during my initial diagnosis haunted me the second time around. I couldn't even shop for toilet paper during the month of October without being reminded I was no longer a cancer survivor.
Last week a fellow metavivor (metastatic breast cancer survivor) posted on Facebook about "going postal" in line at the post office. When she heard the clerk bragging about dollars raised with the breast cancer awareness stamp, she felt compelled to tell shoppers that while she was grateful for the donation to our cause, those dollars aren't going to keep her alive any longer.
Most people don't know their loved one didn't die from breast cancer...she/he died from metastatic breast cancer--when the cancer cells leave the breast and settle in a critical organ such as the lungs, liver, bones or brain. And even though 30 percent of breast cancers will become metastatic, less than five percent of breast cancer funds are actually directed toward fighting metastatic disease. Because of that statistic, there are a lot of hard feelings about PINK among the metastatic breast cancer community.
As a result, metavivors are advocating for change: we want 30 percent of breast cancer funds directed to fight metastatic disease, because 30 percent of funds should benefit 30 percent of patients.
After much consideration this Pinktober, I have decided to sit on both sides of the fence. I will advocate for change while embracing PINK. I pledge to never again scowl at the football players' hot pink shoes; I will not grumble when a store clerk tries to sell something because a percentage of proceeds benefits breast cancer awareness; and I refuse to scoff at the pink-labeled toilet paper.
Maybe my new perspective stems from believing a positive attitude helps fight my day-to-day battle with cancer, or maybe I'm just riding the high of last month's clear PET scan.(I am officially what some people call "dancing with NED." NED = No Evidence of Disease = WOO-HOO!!!)
Either way, here's the bottom line: I am a 33-year old wife, mom, daughter, sister, niece, cousin, aunt and friend. There are people that depend on me, namely my husband and 21-month old little guy, Henry. They need someone to find a cure in my lifetime, therefore I have to believe PINK will come through for us. Like it or not, the only way we're going to find that cure is by working together. Because we really are all fighting the same two-headed monster.
So just like my favorite pink button says, "Big or Small, Let's Save Them All."
Carrie and her mom, Lana participated in the 2011 Susan G. Komen 3-Day for the Cure.
Carrie Corey was diagnosed with stage 2 breast cancer at age 29 and with a stage 4 recurrence in 2012 at the age of 31. She is a wife and new mom living in Dallas, and will be reporting frequently on her cancer experiences.RELATED POSTS
BY GUEST BLOGGER | OCTOBER 25, 2013
After my wife was diagnosed with breast cancer, I was a clueless husband and an equally clueless dad. I didn't know how best to support my wife (eventually I figured out my job was to shut up and listen to her.) As for our two teenage daughters, they seemed to be doing okay. So while my wife and I made sure to keep them up to date on the medical news, I never asked a simple question: How are you doing?
My wife and I just thought: They're still acting like typical teens: stressed by schoolwork, eager to hang out with friends, perpetually annoyed at their parents. They must be okay.
Now my older daughter Maya and I have written a book for teens coping with a parent's cancer. I've learned a lot about how tough it is for these teens – ready to pull apart from the family and form their own identity, then yanked back into the fold by cancer. Here's what I wish we'd said to our dear teenage daughters:
1. If you have questions, ask them. We can meet once a week, we can put a notebook in the den for you to jot questions in – and we'll answer them. And if we seem too busy with cancer appointments and such, ask Mom's sisters. Either they'll have the answer, or they'll find out.
2. We will probably need your help. Since mom is dealing with treatments and I am her appointment companion, we definitely have less time to keep up household stuff. Sometimes we might ask for help. Sometimes we might forget to ask. If you can offer – I'll do the laundry, run the dishwasher, empty the cat's litter box – we'd be incredibly grateful.
3. You're not doomed to develop breast cancer. Only 1 in 10 cases of breast cancer are due to the inherited genes. So mom's breast cancer doesn't mean you are destined to develop the disease at some point. On the other hand, one in eight women are diagnosed with breast cancer, so you are at risk. And I know this sounds like "a boring lecture from Dad," but healthy living is one way to reduce the risk. Studies have shown that three alcoholic drinks a week raise your risk 15 percent compared to nondrinkers. Smoking and being overweight also up the risk, while four to seven hours of moderate to intense exercise a week will lower your risk.
4. It's okay to be mad at us. Mom may have cancer and chemo may make her feel like crap. But we don't expect you to become perfect angels. "It's a fantasy that people who love each other don't get mad at each other," says psychiatrist Paula Rauch, who runs the Marjorie E. Korff PACT Program (Parenting At a Challenging Time), which provides support for families when a parent has cancer. "In fact, you get mad at people you love because you expect a lot from them." I heard of one newly diagnosed mom whose daughter said, "Now I can't even get mad at you." The mom replied: "You can still get mad at me. Even though I'm going through a hard time, I'm still able to manage that you get mad at me. I'm sturdy enough. It might be hard for me, but I'm still your mom."
5. Let's still have family fun. Cancer may seem to be running our lives for the next few months: doctor's visits, chemo sessions, post-chemo recovery days. But let's grab some fun time anyway. You pick the activity: movie, ice-skating, a hike, a pizza outing. And let's just do it. Hey cancer, you can't be the boss of us!RELATED POSTS
BY GUEST BLOGGER | OCTOBER 23, 2013
At age 59, I was fit, healthy and happily retired. My husband Clint and I had just returned from a great trip to Churchill Manitoba, the land of polar bears and beluga whales.
I was pretty thin at the time, but I noticed that my stomach had been bloated. It was hard, not flabby, which I had heard could be a sign of ovarian cancer. I made myself a gynecologist appointment right away, but even an internal sonogram turned up nothing.
The next day I was relaxing at our swim club with my 3-year-old grandson, whom we had been raising since he was 3 weeks old. I started having horrific abdominal pains. They were persistent and scary. My husband immediately took me to the emergency room.
That night my world changed forever. An X-ray and a CT scan showed a large mass in my abdomen and lots of spots in my lungs. It took a biopsy the next day to confirm the diagnosis of primary cancer of the liver, hepatocellular carcinoma. My husband and I were devastated. Life as we knew it was over--so we thought. Thank God we were wrong.
The only bright spot during that time was that the lung lesions turned out to not be malignant. There was no metastasis. It was determined to be a form of granuloma, frequently seen in this part of the country.
I told my sons of my diagnosis that week, and then sent an email to relatives and friends. I told them the news and all its implications. I let them know I still wanted to have people around me and please not to change the way we interacted, not to feel sorry for me, or walk on eggshells around me. I told them if they didn't feel uncomfortable talking about it, neither did I.
So, that's what we did. We talked, we cried, we prayed, we fought. What a wonderful support system I had, especially my husband and my oldest son, Keith.
While the physicians never gave me a stage for my cancer, they couldn't remove all of the cancer after my liver resection. I then went to M.D. Anderson, where the physicians said I had many more tumors. They said my prognosis was about seven months "on a bell curve," and I might live a little longer because I was otherwise healthy. They said I could never have a liver transplant. They were wrong.
It has been seven years since that awful day when I was diagnosed with terminal liver cancer. A lot of prayers, healing, medical treatment, undergoing radiation called Theraspheres, traveling to cancer centers around the nation, a status of NED (no evidence of disease), and yes, even a liver transplant have come in between.
At age 66, I have come full circle, back to fit, healthy and happily retired.
These days I'm trying to pay it forward by mentoring other newly diagnosed liver cancer patients through organizations like beatlivertumors.org, Imerman's Angels and University of Cincinnati liver transplant support group. I want my example to replace fear and desperation with hope and perseverance.
I have truly been blessed.
You can read Nancy Hamm's full account of living with liver cancer and 26 other survivor stories in "From Incurable to Incredible" by Tami Boehmer.RELATED POSTS
BY GUEST BLOGGER | OCTOBER 11, 2013
As of 2013, nearly 700,000 Americans are living with a primary brain tumor. One of those 700,000 ... is me.
Unfortunately for us, brain and central nervous system (CNS) cancers make up just one percent of all cancers in this country. That translates into not only a lack of awareness, but also a lack of understanding. Most colleagues and new friends are shocked when they learn I'm a survivor.
"But you look so....normal" is a popular refrain.
What they don't understand is, I work hard at that normal. We all do. And I'm lucky.
Brain cancer symptoms are directly linked to the area in the brain where the tumor is located. As the tumor grows, it presses on the surrounding brain tissue, which in turn affects the functions controlled by that specific area of the brain. Side effects can be as diverse as headaches, changes in our personalities, difficulty walking, issues with reading and writing, loss of vision, mood swings, incontinence and seizures. Our symptoms run the gamut, and impact all parts of our bodies, because in the end, the brain controls everything.
And the symbol of our fight? A gray ribbon.
To be fair, we aren't the best advocates for our disease. Of the 700,000 of us living with brain tumors every single day, most of us are having a really hard time just walking, talking and remembering, let alone possessing the energy and wherewithal to serve as hopeful, media-friendly ambassadors of this deadly disease.
Using the hashtag #BTSM (brain tumor social media) allows the brain tumor community on Twitter to share what they experience when they learn of their brain cancer diagnosis, and everything that comes after.
But the sad fact is that ordinary people don't think about brain tumors. Ever. There is no high-profile 'awareness' movement for our deadly cancer, and the general public has no idea regarding the signs and symptoms of our disease.
"No one thinks about brain tumors until you or a loved one has one," tweeted @everydayleft.
So who CAN we blame for this lack of public awareness?
I blame the smart aleck who christened the first gray ribbon for the cause.
Ha, ha. I get it. Gray, for "gray matter." The brain has gray matter. Clever.
Except that, the color gray does not stand out. At all. Doesn't grab attention or motivate activism. It's the poor man's pink. And we deserve so much better. When I participate in brain tumor advocacy, and faithfully pin the gray ribbon to my shirt, it's virtually indistinguishable.
Can you imagine Kitchen Aid selling a $350.00 Artisan Series stand mixer for our cause? Delta Airlines inspiring research dollars for painting an airbus gray? An NFL referee drawing attention to the disease by dropping a gray flag? Because I can't. Even brain tumor nonprofits don't even bother asking us to wear gray during fundraising walks and events.
It's not fair to blame a color. But we can blame ourselves. A rebranding is in order here, and now is the time to do it.
More so than any other cancer, brain tumors have life-altering psychological, cognitive, behavioral and physical effects. In the last several decades, only four FDA-approved treatments have been made available. Four. This is outrageous, given that brain and CNS cancers are also the most expensive diseases to treat in this country.
This makes us worth the medical research dollars and this country's attention. It's time to harness that attention into action. Because our gray is getting us nowhere.
Liz Salmi blogs about living with brain cancer at TheLizArmy.com. She won the 2013 Community Leadership Award from the National Brain Tumor Society for her work to raise public awareness of the brain tumor cause. Follow Liz on Twitter at @TheLizArmy.RELATED POSTS
BY GUEST BLOGGER | SEPTEMBER 24, 2013
Earlier this month, I enjoyed a week on the Texas coast with my husband and 19-month-old son, Henry. With miles of ocean views, a constant breeze and tons of personality, it was the perfect spot for us to vacation from work, responsibilities and hospital waiting rooms. Whether it's Hawaii, St. Martin or the Riviera Maya, the beach is like therapy for Chris and me. In the last year and a half, we've juggled a work promotion for Chris, a metastatic breast cancer diagnosis for me, and oh yeah...let's not forget becoming PARENTS and also moving into a new house. Needless to say, we were long overdue for some time with our toes in the sand.
Vacationing with a toddler and a cancer patient is a far cry from hopping a flight to the Caribbean with one suitcase and a carry-on. In those days, I would prepare for vacation with a new bikini and some flip flops. This time around, the weeks leading up to our trip meant buying a case of sunblock, refilling prescriptions, paying medical bills and shopping for sand toys and goldfish crackers.
We drove almost six hours after work on Friday to get there – we couldn't wait to introduce Henry to the ocean.
But instead of waking up that first morning and putting on my swimsuit, I woke up feeling bad...REALLY bad. Bad enough we jumped online to find the closest emergency room and drove 45 minutes to get there. And somewhere between handing the triage nurse a handful of prescription bottles and insisting she take blood from my foot instead of the overworked veins in my arm, it hit me: You can't take a vacation from cancer.
The romantic notion of eight care-free days at the beach with my two favorite guys had been tarnished, and kind of like Eddie Murphy in Beverly Hills Cop, I just wanted to yell, "Man, I'm here on vacation!"
After six hours in the ER full of ultrasounds, CT scans, X-rays and blood cultures, I received the verdict: I was rundown. One of the most frustrating side effects of anti-cancer meds is fatigue, and while I had been powering through with ibuprofen and caffeine, it had finally caught up with me. Despite all of my list-making and preparing for this trip, I had forgotten to tell my cancer I was taking a vacation.
A fellow stay-at-home mom recently told me that even though her recent vacation was great, it wasn't an escape from her day-to-day activities. For her husband, vacation meant spending time away from his job, but for her, she was still changing diapers and trying to keep her child from throwing food at the dinner table – same thing, different location.
Guess the same rings true for those of us in the metastatic boat. While we can vacation from everyday responsibilities like work, school and doctor's appointments, cancer is always with us, no matter how much we try to forget about it. In all my efforts to just be a regular wife and mom, cancer reminded me that I am not.
Call me determined or simply hard-headed, but I took the next seven days at the beach to try and forget about it once again. When I look back on our trip to the Texas coast, I conveniently forget about our excursion to the ER. Instead, I remember the look on Henry's face when he tasted sand for the first time (he's 19 months old and tastes everything!). I remember him saying "Bye, bye" to the seagulls flying overhead and chasing the little birds running along the shoreline.
It was a wonderful week!
Carrie Corey was diagnosed with stage 2 breast cancer at age 29 and with a stage 4 recurrence in 2012 at the age of 31. She is a wife and new mom living in Dallas, and will be reporting frequently on her cancer experiences.RELATED POSTS
BY GUEST BLOGGER | SEPTEMBER 11, 2013
About six months ago, I received a call at my house from a family friend who was in distress. As a community oncologist, it is not uncommon for me to receive cancer crisis calls from family, friends or someone I may not even know. This call concerned the grandfather, whom I will call John, of a friend of one of my boys; the caller was the boy's mother, whom I will call Donna, daughter of the patient.
I had actually known about the situation for some time. Donna and I had briefly talked about it at little league games or at places where parents run into each other. John had been battling liver cancer for over four years. He was being treated at a large, well-known cancer hospital and the doctors there had done an excellent job of keeping the cancer at bay. Over the years, parts of his liver had been surgically removed, others boiled with hot probes and many blood vessels had been choked off to deprive the cancer of oxygen. When these local measures no longer worked, he took chemotherapy and like a good soldier, even enrolled in clinical trials testing experimental ways to treat the cancer.
But John felt that the oncologist taking care of him now was mainly interested in enrolling him in study after study and that none of the chemotherapy or research treatments had done any good. The doctor did not answer his questions, talk to him about prognosis, or treat his ever-increasing pain. By the time his daughter reached out to me, the cancer was growing widespread in his liver and lungs, and John was told to enroll in a hospice program close to home. The center could not do anything more for him. They made him an appointment to return in three months, if he was still alive. Needless to say, the patient and his family were distraught.
Although I did not relish caring for a friend's dying parent, I agreed to see John in my office. I was thinking that I could at least make him feel cared for and supervise his end-of-life care. As John walked into my office and forced a smile, he appeared to be a man in the middle of the ocean holding onto a sinking boat. His wife and children filed in somberly. We started out by getting acquainted, talking about his life a bit and what he wanted most for the remainder of it; we even laughed some. John said he accepted that he was dying, that he could barely get out of bed and had no appetite, but that he just wanted to feel better if possible. He wanted to be hungry again, eat his favorite pasta meal, and be able to move without severe pain.
I first addressed his pain by prescribing a steady, more potent pain regimen. I had to assure him that taking narcotics would not make him an addict, something he feared and which greatly frustrated his family. Next, I was concerned about his shortness of breath, so I ordered a lung scan which revealed blood clots in his lungs (pulmonary emboli) in addition to the tumor deposits; I prescribed an injectable blood thinner, called enoxaparin (Lovenox). He seemed to immediately improved with these changes but he soon developed severe pain in his hip and I diagnosed new bone metastases. I convinced him to undergo a course of radiation therapy (he did not think it was worth the trouble), which fortunately did greatly diminished his pain.
I was relieved that John's pain and breathing improved though his appetite still remained poor. I was not sure how much time he had left. Without us noticing, the days led to weeks which somehow led to months as John's condition gradually improved. He was getting out of bed easily now, going shopping with his wife, even mowing the lawn again. And he was finally eating more; his gaunt appearance began to fill out toward normal. His mood was much less depressed. It was as if the grip of death had given him a respite and left his body.
It took us all by surprise. The family asked, "So, what's going on with his cancer?" I said frankly that I did not know but that we weren't treating it so I couldn't conceive that it was being controlled. But it is not usually the case that a cancer progresses and a patient's condition improves so I was indeed perplexed. Furthermore, I did drawn a tumor marker of liver cancer, called AFP, measurable from the blood. When I first met John it was over 7,000 (normal less than 5). Now two months later, it had inexplicably dropped to 300. I told John and his family that I needed confirmation and another measurement before I believed that huge drop. Sure enough, two weeks later the AFP was 220. In order to see what was happening with the cancer, and to answer their question more accurately, I sent John for a CAT scan. The result was also inexplicable but wonderful: the tumors in his liver and lungs had stopped growing and were actually a little smaller! I was incredulous.
"How could John's cancer be shrinking?" I asked myself this question over and over again as I tried to provide the family with some answers. Could it be the Lovenox? There have been no reports of cancer improving with this blood thinner, though there has been some talk of this possibility in the medical literature. Could it have been the radiation therapy? There have been rare reports of radiation therapy to a focal cancer deposit leading to regression of metastatic cancer in the rest of the body due to activation of an immune response (called an "abscopal effect"). Could it be John's change in attitude, from depression and hopelessness to a feeling of lightness and the joy of living? There certainly has been alot written about a person's "attitude" toward cancer and how important it is to maintain hope. Could it be my role as a trusted physician? I only thought of this after Donna gave me this passage from the book Anatomy Of An Illness As Perceived By The Patient (1979, W.W. Norton & Company) by Norman Cousins:
A prominent physician recalled of his physician father: "The instant he entered the sick room, the patient felt better. The art of healing seemed to surround his physical body like an aura; it was often not his treatment but his presence that cured." Francis Peabody's famous remark, "The secret of caring for the patient is in caring for the patient," is another way of stating that there is a miraculous moment when the very presence of the doctor is the most effective part of the treatment."
I was certainly flattered by that sentiment but could not claim the credit here. No, John's improvement is strictly in the realm of the unexplainable. Regardless, we all shared a joyous moment when the results came in. In contrast, John experienced a different reception when he returned three months later to his original hospital, to which he had considerable loyalty. John and his family were looking forward to seeing the pleased look on his doctor's face but were rendered speechless when he did not comment at all on John's miraculous improvement. "He told me their CAT scans were much better and that I should go for more chemotherapy there." "
Chemotherapy! Can you believe that?" John released a rare expletive as he relayed the encounter. We were all disappointed and surprised by this response.
It is now six months since I first met John, and he continues to thrive. I do not know how much longer he has or why he is enjoying more time than expected. But when you are dealing with cancer and the unexplainable happens, in a good way, I say go with it.
Richard C. Frank is a medical oncologist at Norwalk Hospital in Norwalk, Conn., and is the author of Fighting Cancer with Knowledge and Hope (Yale University Press 2013, 2nd edition).RELATED POSTS