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September 2012 Archives

By Janet Ruffin

solitaryfacefinal.JPGJanet Hull Ruffin is an artist, arts educator and poet. She is finishing a book of poems showing what it's like to work with critically ill children in a major cancer center. She focuses on hospital culture, the therapeutic nature of art and spirituality.

She retired from MD Anderson in January 2009 after serving as the art teacher in the Children's Cancer Hospital for more than 10 years. Her position was special because the time she spent with patients and their families was not about diagnoses, examinations or treatments. They made art together. Currently, she volunteers with the Children's Art Project working with pediatric patients.


One afternoon I was pushing my art cart back to my office. When I rounded a corner I saw a man with his back pressed against the wall, eyes closed and tears streaming down his face. Hanging limply from one of his hands was a bouquet of white roses.

That sight both horrified and filled me with fear to the point of panic. It was all I could do to not take off running. But I did quickly get to my office.

After a few minutes, I peeked out the door and saw him waiting to get on the elevator, the bouquet of roses still dangling from one hand. I slammed the door shut. The scene haunted me for days, causing me extreme dread and discomfort. Only when I wrote a poem about what I saw was I able to let it go.

120928sarah brown.jpgBy Ina Bond

My daughter, Sara Brown Musselman, was diagnosed with ovarian cancer in December 1992 at the age of 23. I want to share how vitally important it is to be an advocate for your loved one's health. MD Anderson enabled me to do that and, in my opinion, they added 15 years to her life.  

When Sara was diagnosed, surgery was done in Louisville, Ky., to remove the tumor and we were told that her cancer was stage III.  

Her local doctor gave me little hope for her survival beyond two to three years.  

I asked if we should get a second opinion. Her doctor agreed and recommended Dr. J. Taylor Wharton at MD Anderson, who was head of the Department of Gynecologic Oncology then.  

At that time, when a patient got a second opinion, the results were sent to the referring doctor -- not the patient. Therefore, we weren't aware there was a disagreement between the two pathologists, and the oncologists, as to the diagnosis.  

Because we were unaware of the difference of opinion, Sara had a second-look surgery and 10 rounds of chemotherapy when she should've had six. She had surgeries she did not need, which affected other areas of her body.

120927lindaspositivetwist.JPGBy Linda Yarger

Linda Yarger is a senior librarian in The Learning Center and has worked at MD Anderson 16 years.

At one time cancer was a dark cloud hanging over my future. Now, my past is what gives me motivation to fight cancer however I can.

From the time I was a teenager, cancer has been part of my life. My mom developed ovarian cancer then, and she died in 1961 at the end of my freshman year in college.

Back then, cancer was not talked about as freely as it is now. For a long time my sister and I did not know why my mom was sick. My Aunt Helen had breast cancer at the same time, in both breasts. When her cancer spread to the bone, we were told she had very bad arthritis. Eventually, we learned that both my mom and my aunt had cancer.

I always wondered if I would get cancer, too. Was there anything I could do to prevent cancer? Whenever possible, I tried to live a healthy lifestyle. When I gardened, I gardened organically. I also avoided using chemicals for housekeeping or insect control.

In spite of my precautions, I was diagnosed with breast cancer at age 46.

By Johanna Pule, Department of Social Work

120926youngadultcaregiving.JPGThis post is a continuation of the Young Adult Caregiving series. Part one detailed the role of a parent caregiver. This one focuses on issues specific to caregiving as the spouse or partner of a young adult patient.

In sickness and in health: Being the partner of a cancer patient living with cancer

Marriage, in fact, relationships in general, can be hard work. Throwing a diagnosis of cancer into the mix creates new obstacles and challenges for a young adult couple.

As the spouse or partner of a patient living with cancer, you may be the primary caregiver for your loved one throughout the course of treatment and may find yourself facing some of the following issues.

Fertility and intimacy

Many treatment side effects can lead to infertility in both male and female patients. As young adults, you may have been making plans to start a family. Often, the logistics of exploring the fertility options that are available, feasible and affordable can be daunting. Fertile Hope offers a fantastic collection of resources for assisting patients and their partners in this search.

Caring for the whole patient, sex life and all, is part of the standard, holistic approach to cancer care. Most health care providers are open to not only exploring fertility options, but are available to discuss intimacy issues with patients and their partners. 

melanoma_patient_BR.JPGBy Brian Rose

Brian Rose has battled melanoma for nearly three years. He has experienced multiple rounds of biochemotherapy, surgeries and radiation therapy, and participated in clinical trials. With a positive perspective and the support of his family and friends, Brian continues his journey one day at a time. He blogs about his cancer experience at www.howsbrian.com.  
 

I had a mole on my forehead that changed in color and shape. My wife urged me to make an appointment to get it checked out. Looking back, when she put her foot down and demanded that I go to the doctor, she probably saved my life.

When I was diagnosed with stage IV melanoma in 2010, the world changed in the blink of an eye. I was 32 years old, I had no health insurance, and I was suddenly fighting for my life against a disease I knew nothing about. I had to do something and I had to do it fast.

Though my journey began at a small dermatology clinic in Cedar Park, Texas, and then my local oncology office, the real battle started the day my mom and I traveled to MD Anderson in Houston and turned onto Holcombe Boulevard for the first time. I still remember her asking, "Where is it?" To which I quickly replied, "It's EVERYWHERE!"

The other side of the ribbon

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othersideoftheribbon.JPGTerry Arnold was diagnosed with a right inflammatory breast cancer (IBC) in August 2007 and a left contralateral tumor soon after. She had six months of chemotherapy, a double mastectomy and daily radiation treatment for six weeks. She completed treatment in June 2008 and has been an IBC ambassador and advocate since.

On this date five years ago, I was told, "Mrs. Arnold, we are sorry but it's most likely too late." It was after four months of hearing, "Mrs. Arnold, there's nothing seriously wrong."
 
What a jump, from "not to worry" to "you have an out-of-control cancer that most physicians have never heard of, and treatment knowledge is limited." 

Now before you think doctors shouldn't look at you and say when your time is up, we need to realize that there are serious conversations held between doctors and patients in those pink-lined offices. It's a place I call "the other side of the ribbon." 

Hope and surviving

After a triple-negative inflammatory breast cancer diagnosis, I'm in the 20% to 40% who make it to the five-year mark. Although I'll be always monitored by my oncologist, society labels me a survivor -- a word I'm most uncomfortable with.

DePinho_moonshots.JPGBy Ronald A. DePinho, M.D.

Ronald A. DePinho, M.D.
, became president of The University of Texas MD Anderson Cancer Center in September 2011.


For MD Anderson Cancer Center, a place where hope abounds and an indomitable spirit is on constant display in our clinics and hallways, Sept. 21, 2012 marks a new chapter in our 71-year history.

Today we take another step -- make that a giant leap -- toward fulfilling our mission of Making Cancer History.

With this morning's launch of our Moon Shots Program, we set forth on a bold new course that will better enable us to convert scientific discoveries into clinical applications and to more quickly and directly benefit the patients who turn to us for help, for hope and for cure.

Inspired by President John Kennedy's historic speech here in Houston 50 years ago this month that both challenged and propelled America's space program to reach the moon within a decade, our Moon Shots Program is equally ambitious -- and achievable, aiming to significantly increase patient survival and reduce suffering over the next decade.


Holly_Chutes and Ladders.JPGBy Holly Easley

Holly Easley began her cancer journey five years ago when she was diagnosed with myelodysplastic syndrome (MDS). After two types of chemotherapy and a stem cell transplant, she says she loves life, is improving daily and enjoys blogging about the cancer experience at http://hollyeasley.wordpress.com/.

While playing Chutes and Ladders with my beautiful grandchildren, I thought to myself, "I've been playing the adult version of this game for a few years now."

Those of us who have been told we have a life-threatening cancer or disease experience disbelief and shock. After the realization sinks in, it's easy to let go and slide down into a deep, dark pit.

Sliding down hill is easy; the path is steep, requires no work and can be quite thrilling. At the bottom of the pit, one becomes aware of the actual frightening and lonely surroundings, and that you might lose this game.

stevenduringtransplant.JPGMore than 4 million babies are born each year in the United States according to the U.S. Department of Health and Human Services. Unbeknownst to many of those mothers, as they give life to their newborn baby, they have a chance to give life to another child who they don't even know.

When babies are born, their umbilical cords are cut and the remaining cord is thrown away. That's the standard routine. However, within those discarded cords lie young stem cells that could potentially save the life of a cancer patient or those facing other health conditions -- lives like Steven Gonzalez Jr.

Gonzalez was on a Boy Scout camping trip in 2006 when he woke up sick with a swollen face. After a trip to the hospital, Gonzalez was soon diagnosed with an aggressive form of acute myeloid leukemia (AML). The 12-year-old was given a 2% chance of survival.

Pediatric oncologists at MD Anderson Children's Cancer Hospital knew that standard chemotherapy would unlikely be enough to cure Gonzalez from his leukemia, and a bone marrow transplant would be necessary. When a search of the Be the Match registry failed to find Gonzalez a bone marrow donor, he was left with one option -- an umbilical cord blood stem cell transplant.

Now, more than five years since his transplant, Gonzalez is cancer free and devoting his time to building his foundation, Survivor Games, to support and connect pediatric cancer patients through playing video games.

JustinOzuna_Hope.JPGBy Justin Ozuna

Justin Ozuna lives in Dallas and was diagnosed with chronic myeloid leukemia in January 2006. He is a Texas state representative and Dallas/Fort Worth facilitator for the National CML Society and a patient at MD Anderson. His mission is to capture the ups and downs of a young adult living with cancer and to serve people through humor, encouragement, hope and adversity at his blog, theozunaverse.com.

"Your field vision test hasn't shown any improvement. There's a possibility that the vision impairment is permanent. Your eye pressure was extremely high for days before you came in, and there's no telling how long it was symptomatic before you even noticed. We can give you another week to strategize a plan for work, but I don't think an extra week is going to help at all."

Paralyzed by the thought of permanence, I sat quietly in a borrowed chair as I tried my best to filter the words of Dr.Esmaeli, the ophthalmologist at MD Anderson.

The room was void of light but full of heavy anticipation. I could see well enough to recognize that the five other people in the ophthalmology room were staring right at me. It was my turn to respond, but I couldn't speak.

How to score prostate health

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120917active senior.JPGSeptember is Prostate Cancer Awareness Month. In observance of this month, MD Anderson encourages men to start making healthier choices for prostate health.

It's true no doctor can guarantee you won't get cancer if you make these healthy choices. But, the research is clear on this point --making healthy choices now means you'll be less likely to develop the disease later.

And, even if you do get prostate cancer, being in tip-top shape can up your odds of successfully treating the disease if needed. 

Follow the advice below for better health.

Get your heart pumping daily
What are you doing to stay active every day? It's an important question because 30 minutes of exercise can help lower your cancer risk. And, for those who get prostate cancer, a recent study says exercise improves your chances of survival.

Luckily, exercise doesn't have to mean going to gym.

Activities, like mowing the lawn or playing golf, can count as exercise. The trick is to be able to talk but not sing when doing these activities.

120914Cain Suzanne.JPGBy Suzanne Cain, Research nurse supervisor, Department of Melanoma Medical Oncology
    
Research nursing is a unique specialty but not one that can be taught in nursing school.

It's a role that requires autonomy, critical thinking, communication, compassion and knowledge of when and how to help others hold onto hope.

My 30-year nursing career has offered success and fulfillment, but never more than in my role at MD Anderson. Every day I'm surrounded by many inspiring individuals: our patients, their families and friends, and talented medical professionals. The daily interactions are my greatest blessings.

The battle against melanoma is personal for me. My father was diagnosed with it when he was in his 30s. Even as a small child, I could sense the urgency and importance of the event that burdened my parents. 

To this day, the donor skin graft scar on my father's thigh is a reminder of the work I do. He's fortunate; his melanoma has never recurred.

Melanoma is an aggressive cancer, but our physicians are just as aggressive. I have learned so much about melanoma and the latest melanoma treatments, because we see it every day in the Department of Melanoma Medical Oncology.

A compass and anchor

As a research nurse, I become the glue that holds the clinical trial protocol together.

I see patients in the clinic and treatment centers, collect information about side effects, coordinate schedules and educate patients and prospective patients about our treatment protocols.

120913Malik.JPGBy Imrana Malik, M.D.

What if you came to the hospital to fight cancer and found yourself fighting something altogether different?

Because of weakened immune systems, cancer patients are at high risk for developing a disorder called sepsis. And because many people have never heard of this disorder before, they don't recognize the symptoms early enough to get help. That's why, worldwide, sepsis causes more deaths each year than prostate cancer, breast cancer and HIV/AIDS combined, according to the Global Sepsis Alliance.

Sepsis happens when the body's immune system kicks in to fight an infection, but instead goes into overdrive and damages its own tissues and organs. This can lead to shock, failure of multiple bodily organs and even death.

Cancer patients aren't the only people with a high risk of developing sepsis: infants, pregnant women and the elderly also have weakened immune systems that can leave them vulnerable. But, cancer patients have a particularly high risk for sepsis because they may have frequent hospital stays, which increases the risk of acquiring an infection.
They may have depressed immune systems because of cancer treatments, and they may have additional weakness due to poor nutrition, illness or frailty from age, all of which can increase the risk of developing an infection.



Sepsis signs
Awareness of the problem and a high degree of suspicion are key. Sepsis can present in many different ways, but some of the most common signs are:

120912melissa.JPGBy Jacob Noack

Jacob Noack created the Melissa Hunter-Noack Foundation in memory of his wife after she passed away from a pseudopapillary tumor.

After returning from a Fourth of July vacation in 2011 with family in Colorado, my wife Melissa Hunter-Noack started having stomach pains. Within a few weeks, she couldn't hold down any food or drink. 

A gastroenterologist diagnosed her with clostridium difficile colitis and prescribed antibiotics for treatment. 

A few weeks later, she noticed some swelling in her ankles and was scheduled for a colonoscopy to check for Crohn's disease.

A CT scan showed an 8 cm mass in her abdomen, and Melissa had exploratory surgery the next morning.

After two hours, Melissa's parents and I still had heard nothing from the doctors, and I knew something was wrong.  

Devastating news
Finally, the oncologist came in and confirmed that it was most likely a sarcoma and that Melissa would need a lot of support. The prognosis was poor and the doctor said Melissa would probably not live past a year. 

120911KenandGilly.JPGCall it what you will: Coincidence, happy accident or synchronicity.
 
Four days after emergency brain surgery at MD Anderson last July, Ken Irving called it incredible.

"I knew it was her right away," he says.

He's referring to Gilly Agosto, a patient advocate for the Department of Volunteer Services at MD Anderson, who walked into his room on the Brain and Spine inpatient unit the afternoon of Friday, July 6, and introduced herself.

Still a bit groggy, Irving couldn't find the words to greet her.

But his wife Janet was immediately struck by her unusual name.

"Did you say your name is Gilly?" she said.

"Yes, why do you ask?," Agosto replied.

Nodding at Ken, Janet said, "Well, it's just that my husband was on a plane from London with a couple named Gilly and Andy on Sept. 11, 2001, and the plane was diverted to Halifax, Nova Scotia ..."

Stunned, Agosto looked at Ken, then down at her clipboard, then back at him. Then she made a beeline for him.

120910Carolyn Gentry.JPGBy Carolyn Gentry

Carolyn Gentry is a 12-year brain tumor survivor. She went through two invasive surgeries and radiosurgery treatment over the course of nearly four years before being declared tumor-free. She credits her faith, family and the care she received at MD Anderson for her survival. Now, she gets to enjoy retirement.   

In 2000, just two years after I retired, I was on an overnight shopping trip to Atlanta and became nauseated and disoriented. My two friends took me to a hospital and that's where my saga began.

In the ER I had a CAT scan and was told there was "something" going on in my brain and I needed to have an MRI. The results: a large meningioma, the most common primary brain tumor.

After the shock of my diagnosis, my husband, Don, son, Buck, and friends began researching brain tumor care centers. We discovered neurosurgeon Ian McCutcheon, M.D., at MD Anderson Cancer Center. From the first time that we met him, there was no doubt I was in the right place.

waitingroomatMDA.JPGBy Mike Snyder

Mike Snyder's cancer journey began with a sore left knee in the mid-1990s while living in Denver. After a variety of tests and minor surgery to correct the problem, he was diagnosed with a specific type of bone cancer called chondrosarcoma. Last spring, his doctor recommended that he switch to a hospice-type care because his tumors were growing too fast. It was an answer he couldn't accept.

After months of research, Snyder became a patient at MD Anderson and has been for more than a year now. Learn more about his experience on his blog mfsnyder.wordpress.com.

This is part II of yesterday's post, Medical Standard Time.


You can always tell when the phenomena I call Medical Standard Time has kicked in. It's 45 minutes past your scheduled time and you haven't been called yet. Everyone seems to be having a bad day, and the room is full of grumbles and sour expressions.

So what can you do about it without making yourself and the staff crazy?

First off, recognize and accept the idea that despite everyone's best efforts, delays and schedule mishaps do happen. Those delays are as frustrating to the folks who work at MD Anderson as they are to those of us being treated here. If you ask about the delay, remember the Golden Rule: A polite inquiry will get you a lot further than a belligerent, demanding diatribe.

I've found it's better to plan on tests taking a long time rather than hoping I'll be done quickly. For example, with CT scans you know you're going to spend a couple of hours drinking the barium mix and trying to keep it down. So why not bring a favorite book, magazine or e-book reader? Or follow your kids' lead and bring an MP3 player loaded with your favorite music.

Medical Standard Time

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medicalstandard.JPGBy Mike Snyder

Mike Snyder's cancer journey began with a sore left knee in the mid-1990s while living in Denver. After a variety of tests and minor surgery to correct the problem, he was diagnosed with a specific type of bone cancer called chondrosarcoma. Last spring, his doctor recommended that he switch to a hospice-type care because his tumors were growing too fast. It was an answer he couldn't accept.

After months of research, Snyder became a patient at MD Anderson and has been for more than a year now. Learn more about his experience on his blog mfsnyder.wordpress.com.

Like most MD Anderson patients, many of my visits include multiple scans with CTs and MRIs. Since I need two MRIs, my schedule consists of a CT and MRI on one day, followed by the second MRI the next day. Even though it can be done safely, insurance restrictions and MD Anderson policy will not allow more than one MRI per day

To minimize the amount of time I have to spend in Houston, Patient Scheduling sets up my appointments as close together as possible. As a result, my first day of appointments is chock-full, often concluding with the CT, followed by the first MRI.  

With all of the appointments stuffed into the first day, I find myself at MD Anderson for eight to 12 hours. Even with everything on the schedule, I end up with a lot of time on my hands. First, there is the time between appointments themselves. Things like blood work and X-rays don't usually take much time, but procedures like CTs or MRIs require a lot of preparation.

120805JenniferAImpost.JPGBy Jennifer Martin

I'm a 33-year-old, stay-at-home mother of two and a caregiver to my husband, Steven, who is battling stage IV melanoma. Following his diagnosis, I've become dedicated to melanoma awareness. I help educate others through blogs, blood drives, participating in melanoma fundraisers and any other way to spread the word. Follow us at martinfamilyjourney.blogspot.com.

When a loved one is diagnosed with cancer there are many different thoughts and emotions you experience. 

First, you go through shock. How did this happen? Why did this happen? Why us? 

After the initial shock, you want to learn as much as you can about the type of cancer your loved one has. Then, you immediately want to find a cure. 

You want to help your loved one. Help raise awareness, help raise funds for research and help find a cure.

That is where I found myself in January when my husband, Steven, was diagnosed with stage IV melanoma. I went through shock and then began endless nights of research. 

I read blogs, medical journals, studies, etc. Then I came across the AIM at Melanoma Foundation website. I spent a lot of time on its site reading about the different stages of melanoma and the latest treatments for each stage of the disease. 

I joined its forum, where you can read and/or post questions or even just vent to others who are going through the same thing. 

Hope and second chances

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Tamismother.JPGBy Tami Schutter

"Mom has cancer." These are the three words I least expected to hear during a phone call with my dad. 

As I heard him say that, I went into shock. I took off the rest of that day of work and rushed over to be with my mom. She was inconsolable, which I completely understood, and my dad wasn't talking to anyone. 

We found out that she had a rare type of stomach cancer. Right away, my dad and I started researching the causes and cures.

My mom's primary care physician said that he would find out which oncology doctor her health insurance would allow her to go to. When it wasn't MD Anderson, we had our reservations. 

Nobody close to me had ever had cancer like this before, but all of my friends and colleagues said that MD Anderson is the best. After a small amount of persuasion, her insurance company agreed to let my mom be treated at MD Anderson. 

First sign of hope
During her first appointment with the oncologist I was relieved to hear him say that they were going to do everything they could for her. That was the first time during this whole ordeal that she was given a glimmer of hope. 

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