CSC Benjamin Center Volunteer Spotlight: Meet Judy Silk

This month, we wanted to provide a "behind-the-scenes" look at one of the CSC Benjamin Center's extraordinary volunteers! Judy Silk has been volunteering and bringing positive energy to the community for more than a year. Quick fun fact to get us started: Judy started doing stand-up comedy at the age of 55! 

To learn more about ways to help, please visit our homepage. New Volunteer Orientation is held every 2nd Tuesday of the month from 3pm with the next one scheduled for January 13, 2015. For more information on volunteering opportunities, please visit the CSC Benjamin Center home page and fill out the volunteer form, here. 

Hi Judy! Tell us about yourself. Where are you from? What is your favorite YouTube video? What is your day job?

I am from Anaheim, CA. I grew up by Disneyland! We went at least once a year and I worked there in High School. I went to college in northern California, in Santa Cruz. 

My favorite YouTube video? It's mean, but also hilarious: 

I am a freelance writer and a performer at the Story Salons. I am a writer/storyteller. 

How long have you been volunteering with the CSC? 

For about a year. 

What made you want to get involved? 

I was in the caregiver's support group and after my husband passed, I began volunteering and helping give orientations. I have a real fervor about getting the word out about the Community. It's incredible what the offerings are and how incredibly helpful it is to people. When I was in the caregiver's group, I really came in kind of stumbling because I was so afraid of everything that was happening and it helped me ease my fears and cope with everything that I had to cope with. 

There were people who really understood what I was going through. Collectively, we all supported each other. 

As a volunteer and member, what resources have been particularly useful for you?

I got so much out of the support groups. Other highlights: lunch and learns, open mic night. There are many more activities I would like to participate in, though!

Describe your typical day here at the CSC Benjamin Center?

I volunteer on Friday mornings, and I also lead orientation. Twice a month, I set up a table at the UCLA Cancer Comprehensive Care Center department to provide information about the various support groups offered here at the CSC. There's been a lot of interest in our Kid Support groups, so I provide information about that as well as answer any general questions about our programs.

What has been your favorite experience as a volunteer, so far? 

Leading orientation has been my favorite experience. When people first come in, you can sense their hesitation and fear and then they visibly relax when they learn there is somebody out there that can understand the scope of what they are going through. Even though we always say the orientation is not a support group, it almost functions as that - it feels so nice to know that they're going to have some camaraderie as they face the challenges that a cancer diagnosis brings. 

I love it when I see familiar faces coming back. When I see people who were in my orientation and they come to yoga or a lunch and learn - that always feels good. 

Do you have any advice for prospective volunteers interested in getting involved? 

Just jump in! It's a guaranteed gratifying experience. Time spent volunteering is such an important contribution to people who are going through so much stress and anxiety - even the smallest gestures that we make have an impact and you can sense the bit of relief that they get through talking and sharing with you. It feels good to help somebody else. 

Finally, if you're thinking about visiting the CSC at all, just remember that: 1) you're not alone, and 2) it's free! Let me state that one more time - all of the programming offered here at the CSC is free! It's a truly wonderful organization. 

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Thank you to Judy Silk for her continued involvement and support. Next up: staff spotlight! Who will it be? Comment below with names and/or suggestions!

What about the kids (and young adults)?

Earlier this year, the Cancer Support Community Benjamin Center began its Kid Support program, a free program for families with children ages 5-17 who have a parent, grandparent, other family member or friend with cancer, or for children who have cancer themselves. Kid Support offers children and teens an opportunity to make friends and learn skills to help them cope with the impact of cancer. The group meets each Thursday from 6-8pm, and parents/caregivers are welcome to join (RSVP required to register: 310-314-2555). To learn more about Kid Support offered at the CSC each week, please visit the CSC Benjamin Center website. 

   Kid Support: 

 WHO: For kids ages 5-17 affected by cancer

 WHAT: Children, Teen & Family  programs

 WHERE: CSC Benjamin Center (1990 S. Bundy  Drive)

 WHEN: Every Thursday from 6-8pm 

 WHY:

 - learn new skills for living with stressors of  cancer

 - get questions answered

 - learn helpful ways to communicate

 - learn relaxation techniques

 - have fun! (art, games, activities, etc.)

In addition to Kid Support, the CSC Benjamin Center offers dedicated support groups for young adults facing cancer, every Wednesday from 6-8pm. Over 70,000 AYAs are newly diagnosed each year. Last year, I attended an adolescent and young adult (AYA) oncology symposium, where adolescents and survivors discussed the unique challenges facing this group, given that AYAs are old enough to understand the realities of a cancer diagnosis and yet, still young enough that they have the majority of their lives left ahead. 

YOUNG ADULT SUPPORT:

WHO: For young adults with cancer ages 18-40
WHAT: Support group
WHERE: CSC Benjamin Center (1990 S. Bundy Drive)
WHEN: Every Wednesday from 6-8pm
WHY: Los Angeles has a growing population of young adult survivors; this is an opportunity to come together in a trusting environment to share concerns and information. For more information, please click here. 

In addition to in-person group support, please check out further online resources below that may be helpful in navigating cancer as a young adult. 

• seventyK
• Resources for age-appropriate treatment including a Wellness Network for patients, caregivers and healthcare professionals
• Critical Mass
• Provides a voice for the AYA cancer movement
• Journal of Young Adult Oncology (JAYAO)
• First cancer journal dedicated to the AYA population; provides a central forum for peer-reviewed articles, reviews and research in the field 
• Young Survival Coalition 
• Community of resources and support for young women with breast cancer
• Vital Options
• Provides video and radio content for everyone touched by cancer
• Stupid Cancer
• Community behind The Stupid Cancer Radio Show and the OMG! Cancer Summit for Young Adults
• Planet Cancer (now part of LIVEStrong)
• Support, resources and "cancertainment" for young adults with cancer

When my grandmother was diagnosed with peritoneal mesothelioma

My grandmother, in her white coat, with my father in Japan

When my grandmother was diagnosed with a very rare form of cancer, peritoneal mesothelioma, I felt far away and helpless in my ability to help. My grandmother was in Japan, where she had just recently retired after more than 55 years in practice as an ob-gyn. I was in America, completing my first year at Stanford University, where I was just embarking on my own journey towards becoming a doctor. Despite the generational, cultural and linguistic gaps, I had always felt a special tie to my grandmother, who - like myself - had grown up between worlds (she, between China and Japan; myself, between Japan and America). She was a trailblazer and an inspiration, and it was a shock for anyone who knew her to learn that she had cancer.

After her initial diagnosis, my father (also a doctor) and I delved into the literature surrounding mesothelioma. The incidence of peritoneal (affecting the abdomen) as opposed to pleural (the lungs) is quite low - even today, only 10-15% of the ~3300 cases in the U.S. each year are peritoneal (source). In Japan, where my grandmother lived, those figures are even lower. There hadn't been much research into this type of cancer, as it's pleural form is more common; however, its only known cause is through exposure to asbestos, a microscopic natural fiber that was heavily used in industry before being banned in the late eighties (in the US). As I poured through the articles, I started to realize her prognosis may not be good.

When I finally made it back to Japan to visit my grandmother, however, I could no longer hide behind my facts and research - I had to face the emotional truth that my grandmother was passing. Over her CT scans and test results, I suppressed the growing sensation that she might not get better. Looking frail sitting up in her bed, I wanted to urge her to not give up. At the same time, I wanted to let her know she could relax. So, I sat by her bedside, playing the role of cheerful granddaughter, reciting recently acquired Mandarin phrases. I remember that there was a lot of silence those days, and yet that the air was thick - full of unspoken thoughts, memories and, always, hope that maybe this would not be the end. As time passed, my grandmother laid out careful instructions for my father regarding a funeral, her house and my grandparent's finances (my grandmother took care of everything, it seemed). Watching her choreograph her own funeral, I let my mind wander to images of her at a more vibrant period in life: my grandmother, rushing to the hospital in the middle of the night. Her furrowed brow as she poured over her patient's paperwork. Her gentle smile and rolling laughter as she taught my brother and I the art of making gyoza (dumplings). She had worked so hard her entire life - she had been one of the only women in her medical school and had left her home country due to the war to establish life in a new country. And she had never once complained. Someone coughed, dissipating my little revery and I looked up at the much older-looking, less energetic woman sitting up in bed.

My grandmother passed away in the spring of 2008, less than one year after she received an initial diagnosis. I think about her often. I think about the conversations we would have as I study for the MCAT, when I am in medical school and when I finally become a doctor.

Losing my grandmother was difficult, but the impact she left will continue to inspire me for as long as I live. It is comforting to know that as long as we continue to remember and take joy in the memories of those who have passed, they continue on. I am honored to "carry the torch" so to speak, as my grandmother devoted her life towards improving the health and well-being of so many others. I can only hope to leave the same kind of legacy.

The Punishing Cost of Cancer Care

By Mikkael A. Sekeres, M.D.

“I think it’s time to switch therapies,” I told my patient, as he and his wife sat next to each other by the wall of my exam room.

He stared at me, unblinking, through his chipped, wire-rimmed glasses as his wife looked quickly down at the medication list she clutched in her hands. Her worn purse sat on the floor by her chair. “Switching therapies” was a euphemism for “your cancer is progressing,” a point I didn’t need to hammer home with them – they both knew the score.

“O.K.” he said, taking a deep breath. “What’s next?”

We had been navigating his cancer together for a year-and-a-half, balancing the most effective treatments we could devise with what his health insurance would cover, and what he could afford. The 90-mile drive to Cleveland was itself an economic strain, gas prices being what they were and their aging car becoming increasingly more finicky, particularly during the cold winter months.... Read the full post on NYT's Well Blog.

10 Things Every Cancer Patient Should Know About Chemo

Published Dec 4, 2014

By Lisa C. Richardson, MD, MPH, Special to Everyday Health

“Will I lose my hair? Can I still be around my grandson? Do I have to wear a mask?”

These are a few of the questions my patients often ask me as I talk with them about the side effects of chemotherapy.

During these conversations, I start off talking about certain side effects they may have heard about: hair loss, nausea, and loss of appetite. When I move on and start talking about another side effect, called neutropenia (one of the most serious side effects of chemotherapy),I can quickly tell they’re not as familiar with this one. But it’s a side effect ever cancer patient should be aware of.

Neutropenia means you have a low white blood-cell count. Chemotherapy drugs work by killing fast-growing cells in the body. These drugs kill healthy white blood cells as well as cancer cells. Because white blood cells are one of the body’s main defenses against infection, you will have a higher risk of infection when you’re on chemo.

As an oncologist, this side effect is one of my main concerns for my patients. Infection can not only make you sick, it can also delay chemo treatment, put you in the hospital, or, even worse, cause death. To help prevent an infection, here are the top 10 things every cancer patient should know:

1. Take Action If You Get a Fever

If you’re only going to remember one thing from this article, this is the one I want you to remember: If you spike a temperature of 100.4 degrees or higher, call your doctor immediately. Also, take your temperature any time you feel unwell or not “right.” Many times, fever may be your body’s only sign of an infection.

2. Know the Signs and Symptoms of Infection

If you experience any of these signs or symptoms call your doctor right away:

    Chills and sweats
    A changing cough or a new cough
    A sore throat or a new mouth sore
    Shortness of breath
    Nasal congestion
    A stiff neck
    Burning or pain with urination
    Increased urination
    Unusual vaginal discharge or irritation
    Redness, soreness, or swelling in any area (including around surgical wounds and ports)
    Diarrhea
    Vomiting
    Pain in your abdomen or rectum
    New onset of pain
    Changes in your skin
    Changes in your mental status

3. Ask Your Doctor When You’ll Be Most at Risk

Chemotherapy treatment will usually involve a number of chemo doses (sometimes called cycles). In the 7 to 12 days after you finish each chemotherapy dose is when you have the fewest white blood cells in your body. Because of this, it will be extra hard for your body to fight off germs during this time.

Find out from your doctor or nurse exactly when your white blood cell count will be at its lowest, and be extra careful during this time.

4. Wash Your Hands With Soap and Water, and Ask Others to Do the Same

It’s that simple. One of the best ways to keep yourself from getting sick is to keep your hands clean. Be bold. Don’t be afraid to ask your family, friends, visitors, doctors, and nurses to wash their hands too. If soap and water are not available, it’s okay to use an alcohol-based hand sanitizer.

5. Get a Flu Shot

The CDC recommends that people with cancer get the seasonal flu shot as soon as it is available. Talk to your doctor or nurse about this.

6. Take Your Medication

Whether you are taking medicine in a hospital, clinic, or at home, follow these tips:

    Take your medication exactly as your doctor prescribes.
    Do not skip a dose.
    Plan ahead so you don’t run out of your medicine.
    Never take medicine that is prescribed for someone else, even if it’s the same type and dose as yours.
    Do not use leftover or outdated medications.
    Report any side effects you experience right away.
    Talk to your doctor before taking any over-the-counter medications.

7. Pay Attention to Your Catheter or Port

To lower your risk of developing an infection, always follow your nurse or doctor’s instructions and keep your device clean and dry, washing your hands before touching or caring for the device.

Contact your doctor or nurse immediately if you notice any redness, swelling, soreness, or drainage near your catheter or port.

8. Practice Good Personal Hygiene

The medicines you take to treat your cancer may cause your skin to change in a number of ways. These changes, like dry skin and irritation, can lead to openings in the skin where germs can enter and infection set in

    Bathe every day using warm water and a mild soap.
    Avoid soaking in spas or hot tubs.
    Be sure to clean your feet, groin, underarms, and other sweaty areas well.
    Do not rub skin with a towel — pat it dry instead.
    Do not share your bath towel with other family members.
    Use unscented lotion or moisturizing cream on your skin after it has dried completely.

9. Enjoy the Things You Love to Do

Going out in public: If you feel up to it, it’s generally fine for someone getting chemotherapy to visit public places, or to have friends and family visit. Try to avoid situations where you might come into close contact with people who could be sick, and make sure you wash your hands afterward.

Caring for your pet: You can still care for your pet as long as you protect your skin from direct contact with pet waste. I suggest wearing vinyl or household cleaning gloves. Wash your hands immediately afterward. If you get scratched or bitten, immediately wash the wounds well with soap and water.

Gardening: You can still enjoy gardening if you take steps to protect your skin from cuts and scrapes by wearing gardening gloves, and washing your hands with soap and water afterward.

10. Avoid Certain Foods

To protect yourself, avoid the following:

    Undercooked or raw meat or eggs.
    Raw or unpasteurized products (check the label on dairy products, such as milk and cheese, and on fruit juices, to ensure they are pasteurized). Raw and unpasteurized products contain bacteria that may cause you to become ill.
    Unwashed fruits or vegetables.

I also encourage you to visit the CDC’s website on preventing cancer infections, where you’ll find resources and information to help you stay healthy during your cancer treatment.

Check out the original post from Everyday Health here.

 Lisa C. Richardson, MD, MPH, is the Director of CDC’s Division of Cancer Prevention and Control (DCPC), and the lead investigator of CDC’s Preventing Infections in Cancer Patients program. She provides leadership and direction for all scientific, policy and programmatic issues related to four national programs: the Colorectal Cancer Control Program, the National Breast and Cervical Cancer Early Detection Program, the National Comprehensive Cancer Control Program, and the National Program of Cancer Registries.