The Johns Hopkins Kimmel Cancer Center offers many resources to patients and families including spiritual and pastoral care.  Our staff members offer sensitive, spiritual support for patients, family members, caregivers and hospital staff from a wide variety of religious denominations.

Chaplain Rhonda Cooper shared her calling to work with cancer patients in a recent article for Johns Hopkins Dome. "God brings me into the lives of people here for a reason. Though I wish I knew what these patients were like before the became sick, I accept that I know them now and want to be there for them in the present," she said.

Read the article about Rhonda and how she is finding peace for patients.

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*This post was written by Marie Borsellino, B.S.N., R.N., O.C.N., oncology nurse navigator for the Managing Cancer at Work Program.

In November 2012, the Obama administration issued a proclamation that recognizes the challenges faced by the approximately 65 million Americans who care for their sick, elderly, and disabled relatives and friends. President Obama said:
“National Family Caregivers Month is a time to reflect on the compassion and dedication that family caregivers embody every day. As we offer our appreciation and admiration for their difficult work, let us also extend our own offers of support to them and their loved ones…Family caregivers have an immeasurable impact on the lives of those they assist, but their hours are long and their work is hard. Many put their own lives on hold to lift up someone close to them.”

In a MetLife Study of Working Caregivers and Employer Health Costs, it has been reported that six in ten family caregivers are employed. 73% of family caregivers who care for someone over the age of 18 either work or have worked while providing care; 66% have had to make some adjustments to their work life, from reporting late to work to giving up work entirely; and 1 in 5 family caregivers have had to take a leave of absence. While caregiving for a loved one while working poses many challenges for the employee the results of a quality of life study done by the American Cancer Society in 2005 show that some caregivers benefited from being employed and better emotional adjustment. The report also states that one quarter of all employees are acting as caregivers. The reasons the employed caregivers did better emotionally are not outlined but might be attributed to support from their employer and co-workers that helped to reduce the distress of cancer caregivers to make their caregiving experience manageable and more meaningful. For many of us, our workplace is another supportive environment.

I asked Terry Langbaum, Chief Administrative Officer, Kimmel Cancer Center at Johns Hopkins, to weigh in. “It is important to recognize that caregiving is hard work – emotionally and physically. At times, it requires the employee to give up preferred activities to provide care, reassurance or transportation to the sick family member. It can be disruptive to the employee’s routine, and cause him/her to lose time from work that would otherwise be vacation or sick time. It can cause employees considerably anxiety and stress, which can impact their ability to function well on the job.

A supportive work environment will provide a family caregiver with encouragement, recognize the time and effort they are spending to benefit their loved one, and support the employee during this time of concern about their loved one. Work also provides a diversion from that worry, and can be distracting and satisfying to the caregiver.

Many caregivers will feel torn between obligations at work, and obligations for their loved one. Managers and supervisors need to treat everyone fairly and follow the human resources policies, but they can be an extension of the support system for a family under stress due to medical conditions.

So if you are a caregiver or know of someone who is acting as a caregiver let’s recognize the personal sacrifice it takes. Some of us are caregiver to multiple people at once or over a period of time. This month is dedicated to recognizing these unsung heroes. We may all be there one day caregiving or receiving care.

Read more from the AARP and a Gallup poll. Watch our video on caregiving in the Fine Print of Cancer video series:

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*This post was written by Marie Borsellino, B.S.N., R.N., O.C.N., oncology nurse navigator for the Managing Cancer at Work Program.

X-ray of lungs

Cigarette smoking is the most important risk factor in the development of lung cancer. It is estimated that as many as 90 percent of lung cancer diagnoses could be prevented if cigarette smoking were eliminated. Exposure to certain industrial substances such as arsenic, some organic chemicals, radon, asbestos, radiation exposure, air pollution, tuberculosis, and environmental tobacco smoke in non-smokers also increases a person’s risk of developing lung cancer.

What can I do? Be aware of new Screening Guidelines recommended by the U.S. Preventative Services Task Force outlined below:

• Yearly screening with a low-dose CT scan is recommended instead of screening with a chest x-ray or no screening for people age 55 to 74 who have smoked for 30 pack years or more or who have quit within the past 15 years. Medicare just recently made a proposal to reimburse these screenings for eligible patients.

• CT screening is not recommended for people who have smoked for less than 30 pack years, are younger than 55 or older than 74, have quit smoking more than 15 years ago, or have a serious condition that could affect cancer treatment or shorten a person's life.

• Talk with your health care provider about your personal risk especially if you have a family history, have had other cancers, or have smoked fewer years than the guideline had established.

• Make sure you have your screening done at a facility with experience in screening for and treating lung cancer.

• Visit a facility with established guidelines that are in line with the best established practices for screening for lung cancer.

• Most importantly, if you smoke stop smoking and seek help in quitting if you need to. Johns Hopkins employees have a smoking cessation program available.

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Blending music and science may seem unusual, but Kimmel Cancer Center director Bill Nelson did just that when we created a video to explain how DNA changes because of epigenetics. It turns out that music hits just the right note when it comes to describing this scientific concept, thanks to our colleagues and musicians at the Peabody Conservatory.

 

Read our magazine, Promise and Progress, The Story of Epigenetics

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*This post was written by Marie Borsellino, B.S.N., R.N., O.C.N., oncology nurse navigator for the Managing Cancer at Work Program

As we close international breast cancer awareness month, I would like to honor those women and finally the organizations that support those living with metastatic breast cancer. We know that in 2013, an estimated 232,340 new cases of invasive breast cancer were expected to be diagnosed among US women, as well as an estimated 64,640 additional cases of in situ breast cancer. Of those 6-10% of new breast cancer cases are Stage IV. Of all breast cancer cases diagnosed, 20-30% will become metastatic.

Of those living with metastatic disease, especially during October, there is a sense of isolation. They can actually be upset with the marketing strategies developed to promote awareness. When they attend support groups they can be accused of not being positive enough or even worse be perceived as a quitter. The reality, I am here to report could not be further from the truth. I have witnessed the strength, poise, and resilience of these men and women first hand. They are warriors like no other.

Years ago, when I was new in my role as a breast health navigator, during October, I attended a monthly support group. At the end of the meeting I was cornered by three women whom I knew all had metastatic disease. They pleaded for me to help them establish a group where they could freely talk about their issues. They eloquently laid out their case: Not one of them was looking to “give up” but their needs were plainly different.  They were planning for a dignified farewell in case the new clinical trial or protocol being tried did not work.  This group of women were determined to make the most of their time and needed a platform to vent about their issues. They didn’t want to “bum” out the other patients with the early stage treatable breast cancers that we, in this country, are so good at treating or perhaps if the critics are correct, over-treating. They wanted to talk about how to get affairs in order, talk to their kids, and grandkids, say good bye to their lover, their parents. These women know their loved ones don’t know how to deal with them.  They were requesting a safe place to resolve feelings that they keep hidden from others but are right there always so close to the surface and finally, a place to freely discuss the physical and financial pressures that are a reality for most cancer patients.

I agreed to co-facilitate the group with one caveat; I needed to partner with an oncology social worker. Our group was attended by mostly stage IV advanced breast cancer patients, and we were fortunate to have some other breast cancer survivor/volunteers that were willing to provide transportation and maybe stop for a quick bite to eat if time allowed. The group was small but mighty in scope as we tackled so much in our time together. We did cry together when someone lost their battle, but I have to say, mostly smiled and laughed at the absurdities of life, and the power that comes from being embraced by a supportive environment. This collaboration lasted for almost five years until I moved here to Baltimore. I believe that working with this group was one of the best things professionally I have ever done. I learned so much from this group and saw how the effects of planned coordination, access to quality oncology care in a timely way, and the effects of plain, good old listening to each other can do wonders. Metastatic breast cancer patients deserve to be heard, and I would like to applaud all the wonderful groups out there that are heeding the call and providing these patients with education and support.

So here’s sending a special shout out to the following organizations:

Advanced BC.org -   dedicated solely to the needs of people living with metastatic breast cancer

Living Beyond Breast Cancer – Their mission: to connect people with trusted breast cancer information and a community of support.

Metastatic Breast Cancer Network- a national all volunteer advocacy organization dedicated to the concerns of the women and men living with metastatic breast cancer.

Metavivor - a national support, outreach and research-granting organization dedicated to metastatic breast cancer.

Find out more about Johns Hopkins retreats for metastatic cancer patients:

Breast Cancer

Colon Cancer

Pancreatic Cancer

 

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More than Miles

**This blog post was written by Kimmel Cancer Center development specialist Allison Rich.

For Te(5A)m, the Ride to Conquer Cancer is about far more than the miles. The team was founded by the oncology nurses from Unit 5A of the Kimmel Cancer Center in Baltimore – but the team members’ stories are far more diverse than their namesake would suggest. While each teammate’s reason for riding is unique, what brings Te(5A)m together is their cohesive goal – to move us one step closer towards eradicating cancer entirely.

For team member Kathie Garben, an oncology nurse herself, this goal strikes very close to home. Having beat cancer not once, but twice, her own experiences are what inspired her to go back to school to study nursing. Working with research and clinical trials throughout her nursing career, Kathie has seen firsthand the huge advances that researchers have made in the past several years alone. Beyond the research taking place at the laboratory bench, she has also seen the bravery of those patients who know there is not a cure for them, yet willingly participate in research trials in the hope of helping someone else down the road.

This is the lynchpin of why Kathie is gearing up to ride this September – to make others aware of the critical research that is taking place at the Johns Hopkins Kimmel Cancer Center, Sibley Memorial, and Suburban Hospitals, and to raise funds to support it. After first getting into cycling as a hobby, and then successfully taking on challenges such as the Five Borough Tour in NYC (twice!), the Ride to Conquer Cancer offered the perfect opportunity for Kathie to combine her desire to pay it forward with a sport that she loves.

For Ryan Close, the drive to participate in the Ride to Conquer Cancer is as deeply rooted as Kathie’s. Having battled cancer three times, Ryan first came to Johns Hopkins for treatment back in 2011. Having planned to get into cycling once he was well, Ryan received a bike from a close friend in celebration of conquering his disease. Since then, he has immersed himself fully into what is now his favorite activity – cycling – and has successfully completed a few centuries (100 mile rides), as well as a triathlon.

As Ryan describes it, the Ride to Conquer Cancer is a great way to pay tribute to the physicians and nurses who helped him beat his disease: “It’s a great way to give back – if it weren’t for them, I wouldn’t be around and wouldn’t be able to enjoy cycling as much as I do now.”

Long after the Ride has ended, the funds raised by Ryan, Kathie, and their teammates from Te(5A)m will continue to help accelerate discoveries that will make a difference in the lives of patients and their families. With only a few short weeks left before the opening ceremonies on September 13th, the team has a few more fundraisers planned to help them make it to the starting line.

To help riders and community members reach their fitness goals, the Maryland Athletic Club (MAC) has offered a “25 days for $25” deal, available to all first time MAC members, with proceeds going towards cancer research at Johns Hopkins.  Additionally, on Wednesday, September 3rd, Te(5A)m will be hosting a spin class at the MAC in Harbor East. The hour long class will start at 7:15 PM, and a $25 donation covers the class as well as all-evening access to the MAC’s numerous amenities, such as the pool and hot tub. The class will also be followed by a free cool-down yoga class taught by the team’s own yogi, Halley Friedeman!

With the Ride to Conquer Cancer just around the corner, now is the time to come together to support all of our riders, patients, and families as we prepare to ride to victory this September. As Te(5A)m demonstrates, no matter why we choose to ride, we cannot do it without each other.

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Hope Matters

**This blog post was written by Elisabeth Carrino-Tamasi. Elisabeth is a Clinical Social Worker at the Johns Hopkins Kimmel Cancer Center at Sibley Memorial Hospital and the proud daughter of Dominic Carrino

You have cancer.  Those three words turn the world upside down and leave patients, family members, and loved ones reeling from the news – and seeking sources of hope.  For each of us, hope comes in different forms.  Understanding and recognizing these individual distinctions and personal nuances is an essential component of optimizing oncology care at the Kimmel Cancer Center.  Because hope matters.

photoIn 2012, the Kimmel Cancer Center unveiled The Hope Project.  The program is designed to incorporate each patient’s definition of hope into their treatment plan, while establishing a community of support that complements these hopes. This requires faculty, staff, caregivers, and patients to be fluent in the language of hope and its individual interpretations.

To further etch The Hope Project into the daily culture of the Kimmel Cancer Center, a sunflower was chosen to symbolize the program.  Bold and bright and always turning to face its source of nourishment, the sunflower is the perfect embodiment of what hope means and why it matters to each of us.  For example, pins featuring the sunflower have been widely distributed amongst the Kimmel Cancer Center community, frequently from provider to patient, as a means of initiating dialogue and increasing fluency in the language of hope.

Last fall, my dad – Dominic Carrino – passed away after a battle with melanoma.  To anyone who knew him, Dominic was larger than life and full of hopeful optimism.  Sitting at my desk one day, I looked down at a plaque he gave me that reads, "HOPE – choose to see through optimistic eyes.”  From there, an idea came to life. My family decided to support The Hope Project, and establish a lasting memory of Dominic through the creation of a work of art modeled on the project’s sunflower logo.

Thus, at this year’s Cancer Survivor’s Day, 200 patients wrote their hopes on the petals of a sunflower that was then assembled by two local artists and blessed by Rhonda Cooper, the Kimmel Cancer Center chaplain. The completed project now hangs in the Weinberg Ceremonial Lobby, and will serve to both honor the eternal optimism of Dominic and help educate the Kimmel Cancer Center community about hope and the vital role it plays in the face of cancer. Most importantly, the Carrino Sunflower will be a lasting reminder to all of us that hope is a reservoir of strength, a sustaining force, a guide, a positive state of mind, a peace-giver – and a lifeline.

Dr. Evan Lipson, Dominic’s oncologist, remarked that “Mr. Carrino was a warm and genuine man whose sense of hope brought joy and fulfillment to him and his loved ones.  A hopeful inner strength exists in every one of us; as an oncologist, one of my jobs is to help patients access their hope, to empower patients and families confronting a cancer diagnosis.”

As part of The Hope Project, the Carrino Sunflower will also be featured on posters which will hang in each exam room, displaying information about the Project that patients may use to help initiate conversations about hope with their physicians. Online teaching modules, and a video compiling interview clips surrounding the role of hope in patient-physician interactions, will further spread the language of hope throughout the Cancer Center and the community. A befitting tribute to Dominic, our eternal optimist, as well as to the battles being fought by each patient who walks through the Cancer Center, the Carrino Sunflower will continue to represent the optimism and hope that supports patients and families throughout their entire cancer journey.

 

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Whether you have just been diagnosed with cancer, are currently undergoing treatment, or are in remission…. YOU are a cancer survivor!  This survivorship experience is unique for each cancer survivor and their caregivers.  Some are challenged by changes in appearance or physical abilities, by changes in priorities, or by changes in daily routines.  Others are challenged by increased levels of anxiety and worry, finding new interests,  or by trying to find their new “normal”.

To help address survivorship challenges,  the “Surviving Survivorship: Living with Cancer” free educational event is being offered to cancer survivors and their caregivers.  Workshops are led by experts and are designed to address a variety of needs and interests.

WHEN:   Saturday, October 11, 2014
12 noon - 4 pm

Workshops include:
Tools for Taming Worry and Anxiety (led by Lacy Fetting, LCSW-C)
The Challenge of Caregiving: A Conversation for Caregivers (led by Terry Langbaum, MAS)
The Art of Thriving, the Grace of Living (led by Cinder Hypki, MS)
Survivorship from a Physician’s Point of View (led by Katherine Thornton, MD)
Yoga for Cancer Survivors and Caregivers (led by Kymberly Sevilla, ACSM)
The Needs of the Spirit: Is There Meaning in Cancer? (led by Rev. Christopher Brown, MDiv)
Beauty Inside and Out! (led by Marianne Kelly)

A complimentary, seated lunch is offered to all attendees.  This conference is conveniently located to provide easy access from Baltimore City and from Baltimore, Howard, Anne Arundel, and Montgomery counties.

Location: BWI Airport Marriott, 1743 West Nursery Rd, Linthicum, MD
RSVP Required:  Seating is limited, please register by October 1!
By Phone:  Barry Miller, 410-955-8934

Please join us on October 11 for this 2nd annual conference!

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“Don’t be shy. It is not a sign of weakness to want a person of faith by your side at a time like this,” says Rhonda Cooper, an oncology chaplain at the Hopkins Kimmel Cancer Center in Baltimore.  If you are struggling to understand why you have cancer, are feeling a range of emotions from guilt to anger, or feel isolated from your faith community, our experts in spiritual and pastoral care can help you as well as your family members in a non-denominational setting. As you progress on your cancer journey, our chaplains can:

  • Make sure your religious traditions and practices are observed as fully as possible.  For example, Communion and Anointing of the Sick can be provided during your hospital stay.
  • Offer you comfort in times of spiritual distress and anxiety.  Listening to your concerns is at the heart of the Chaplain’s practice.
  • Pray with you during your treatment.  You may want to pray with a Chaplain, as a source of comfort and support during your treatment
  • Support your family and friends. Chaplains also are available to support your personal support team. You also can ask a chaplain to participate in physician-family conferences.
  • Talk with you about end-of-life decisions. Chaplains can assist you in completing advance directives, including a selection of a health care agent, treatment preferences (living will), and decisions about organ donation.

Your doctor, nurse or social worker can contact a chaplain for you. Chaplains for the cancer center are located in the Weinberg Building, Suite 1210, or by calling 410-502-1500. Here’s a video consultation with Chaplain Cooper to get you started:

 

Find out more about the full range of spiritual support services at the Johns Hopkins Kimmel Cancer Center, and look for other useful resources in our Patient and Family Education pages.

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Theodore DeWeese on Mount Everest

Photo at Left: Dr. Ted DeWeese at the summit of Mt. Kala Pattar. It is 18,600 feet above Everest Base Camp and is considered the best place in the world to view Everest.

The name is even more recognizable than our own Johns Hopkins and mispronounced with far less frequency. The country of Nepal’s Mount Everest—for nearly a century, mountaineers, sportsman and adventurers have sought to climb planet Earth’s highest mountain. It’s peak among the Himalayan Mountains sits 29,000 feet above sea level. (For context, it would take 20 Empire State Buildings or nearly 30 Eiffel Towers stacked one atop the other to reach the peak of Everest.)

To climb Everest requires incredible mental and physical stamina. From altitude sickness, subfreezing temperatures, avalanches, dangerous crevasses, and large pieces of falling ice, Everest can subject even the most skilled of its would-be ascenders to a variety of challenges. Its rocky and frozen face is the setting for great accomplishments and incredible tragedies. Dr. Theodore DeWeese, Director of Radiation Oncology and Molecular Radiation Sciences, witnessed a little of both during his recent trek to the Base Camp of Mt. Everest and the scaling of several mountains around it.

Dr. DeWeese trained for more than a year to get ready for his Everest trip. Part of his regimen included daily stair climbs with a weighted backpack from the basement to the roof of Johns Hopkins’ tallest building, the Zayed Tower.

He was well prepared, and although the elements were not always kind, including 50 mph winds and temperatures in the twenties, his trip was everything he had hoped. The grandeur of the mountain is difficult to describe, he says. “Photos, even those done by professional photographers, do not do it justice, and words cannot adequately describe the beauty and size of the mountain,” says Dr. DeWeese. “It is a place that causes a person to become quite conscious of his connection to the world.”

At about 14,000 feet on his trek to the mountain, he and his fellow climbers serendipitously came upon the funeral for one of the local mountain guides from the community called the Sherpa who was killed in a recent avalanche. They were invited into the Tibetan Buddhist monastery where it was being held. The Sherpa was one of 16 killed in the April 2014 disaster that resulted in the largest loss of life ever in a single day on Everest. The event was both a reminder of the unpredictability of the mountain and of its beauty. “It was an honor to observe this 800-year-old culture. It was an amazing experience, and one that could not have been witnessed anywhere else in the world,” says Dr. DeWeese.

His trip included a two-week Sherpa-guided climb up the mountain to 18,600 feet, and a one-week trip back down. (Hikers can climb to 21,000 feet without oxygen.) On the last day of the trip down the mountain, Dr. DeWeese passed a young man and woman sitting to the side of the trail. Sensing something was wrong, he returned to check on them. The man was ill with food-poisoning-like symptoms. It was the first day of the couple’s trip up the mountain, and despite his ill health, the man was determined to continue their planned hike for the day. The young American couple, who seemed to be in their mid to late twenties, appeared very fit, but they were attempting their climb without a guide. Each was carrying backpacks weighing about 70 pounds, and they still had had four hours of steep climbing ahead of them. Dr. DeWeese had medical supplies in his gear, and he gave the man an antibiotic and hydration packets. Dr. DeWeese’s guide suggested a small lodge nearby where the couple could go to rest and allow the antibiotic to go to work.

Dr. DeWeese returned to his group, but the young couple remained on his mind, so he and two of his hiking mates walked back. Just 30 minutes had passed since he had left the couple, but the man was now laying in the dirt. He was pale, shaking, and sweating profusely. Dr. DeWeese recognized that the man had a systemic and potentially life-threatening infection, which he later learned was caused by an ill-advised chicken burrito he ate in Katmandu, Nepal the day before.

Dr. DeWeese and another climber carried the sick climber to the small lodge the Sherpa had mentioned earlier. Had they not been on the side of a mountain, Dr. DeWeese says the man was sick enough that he would have been hospitalized. Once there, Dr. DeWeese learned he had not yet taken the antibiotic, so he got him into one of beds in the tiny six-foot by six-foot space and went to work administering antibiotics and fluids. Up until this point, the young man was trying to convince himself that his illness was not that serious, but now he was scared and compliant.

During the of course their conversations, Dr. DeWeese was surprised to learn that the woman had just graduated from medical school and was about to begin training in radiation oncology. The couple did not have cell phones or radios, and without medical attention, the young man could have died on the mountain. Yet, there in the one of the remotest areas of the world, they came upon each other—this young, up and coming radiation oncologist and one of the world’s leading and most seasoned radiation oncologists, and fortunately for the young couple, Dr. DeWeese was well prepared. He left the woman with all of his medical supplies, instructions for caring for her friend, and a few words of sage advice.

“Remember, this is a vacation,” Dr. DeWeese told them. “I know you have a goal, but you can always come back another time.”

A few weeks after he returned from his trip, Dr. DeWeese received an email from the young woman thanking him for his help and letting him know that her friend had recovered and they were able to safely complete their climb to Everest Base Camp.

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