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Help us Welcome Denise Coulter

denise-coulter
Cancer Support Community VVSB would like to welcome Denise Coulter, our new Program Assistant!

Denise has been married for 17 years to a law enforcement officer and has two children, ages 9 and 14.  She enjoys scrapbooking and reading in her spare time.

Denise discovered Cancer Support Community VVSB while looking for a place to volunteer her time. She said, “It looked like such an amazing place that made a huge impact in people’s lives.  As I got to know both the staff and participants, I have developed an even greater appreciation for our unique and special community.  I am thrilled to have the opportunity to be the new Program Assistant.”

Say hello to Denise the next time you’re at CSC!

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Ask the Expert – End of Life Options and Medical Aid in Dying with Erika Ruiz

On Tuesday, March 28th she will review strategies for having important conversations with your doctor, options for end of life care, and how to access California’s End of Life Option Act at the Cancer Support Community Valley/Ventura/Santa Barbara. For those who can’t make it to the workshop, Erika Ruiz was kind enough to provide the following information for our readers.

End of Life Options and Medical Aid in Dying

by Erika RuizPic Conversation at End of Life.png

We live in a death denying culture, and fear often keeps us from having meaningful conversations with our doctors and loved ones about what we want and don’t want at the end of life. It’s sometimes not easy talking about end of life issues, but it is important to have end of life planning conversations early which leads to planning for a good death and consciously thinking through your priorities and options, and the options in California now include medical aid in dying.

Have you heard of California’s End of Life Option Act? This law is California’s medical aid in dying law, similar to Oregon’s Death with Dignity Act, and it went into effect on June 9, 2016. This law gives terminally ill adults the option to get a doctor’s prescription for medication they may decide to take to end unbearable suffering, by dying peacefully in their sleep.

California is one of seven jurisdictions in the United States that now authorizes medical aid in dying. Along with California, medical aid in dying is authorized in Oregon, Washington, Montana, Vermont, Colorado and Washington D.C.

In Oregon, where the law has been in place for 20 years, many people and their medical providers were confused about the law, and heartbreakingly, were waiting too late to start the process once their suffering or pain became unbearable, and so the aid-in-dying option was not available to them despite their eligibility and despite the amount of pain and suffering they were in.

Because people lack accurate information, they wait too long to initiate end of life conversations and decision-making processes with their doctors and loved ones. We want to learn from Oregon and make sure that all Californians have access to their full range of end of life options. This is why Compassion & Choices has launched the bilingual California Access Campaign. The Access Campaign focuses on educating the public and medical professionals about all end of life options, including medical aid in dying.

Who is eligible for medical aid in dying?

To be eligible under California’s law, an individual must be:

  • An adult
  • Terminally ill
  • Given a prognosis of six months or less to live
  • Mentally capable of making their own healthcare decisions
  • A resident of California
  • Acting voluntarily
  • Making an informed decision which includes being given information about all end of life options
  • Informed that s/he may choose to obtain the aid in dying medication, but not take it
  • Capable of self-administering and ingesting the aid in dying medication

How long does the process take to request and obtain the aid in dying medication?

The process can be a lengthy one (and may not be successful) if you do not have a supportive healthcare team. The average length of time is between 15 days to three months and requires at least two doctor visits.  Therefore, it is very important for individuals who may want to access the law to talk to their doctors early.

What cause of death is listed on the death certificates of individuals who accessed medical aid in dying?

The underlying illness should be listed as the cause of death. The law specifies that a death resulting from self-administering aid in dying medication is not suicide

Does accessing medical aid in dying affect a person’s will or insurance?

No, accessing medical aid in dying does not adversely affect a person’s will or insurance. The law specifically mandates that wills, insurance, contracts and annuities are not affected if a qualified individual shortens their dying process by ingesting aid in dying medication.

Note that no one but you can make this request to your doctor(s). The request cannot be made by a designee or third party (including relatives or anyone with power of attorney), and the request cannot be made via an advance healthcare directive.

Ask your doctor and medical providers now whether they will support your end of life choices, including medical aid in dying. This will encourage your medical providers to listen to your priorities and become prepared to provide you with the treatment you may want in the future. Compassion & Choices provides assistance to physicians through our Doc2Doc Program, which offers free, confidential telephone consultation with a seasoned medical director. Please feel free to give your physician the Doc2Doc phone number: 1-800-247-7421.

More information is available at: www.CompassionAndChoices.org and www.EndOfLifeOption.org

Compassion & Choices
3055 Wilshire Blvd, Suite 1010
Los Angeles, CA 90010
1-213-325-3073
1-800-247-7421


Erika Ruiz is the Central California Outreach Manager for Compassion & Choices, a national nonprofit organization working on improving care and expanding choice at the end of life. Her interest in advocating for and educating on end of life care options stems from her experience witnessing her father suffer a difficult death in an ICU. She started volunteering with Compassion & Choices during the legislation of the End of Life Option Act and now educates Californians (in English and Spanish) on their full range of end of life care options.

Volunteer Spotlight – Becky Buck

becky-buckBecky Buck has been involved with Cancer Support Community Valley/Ventura/Santa Barbara since she was in High School. Originally starting off as a docent for Holiday Homes Tour, Becky’s commitments to CSC have only increased over the years.  She currently serves on the Board of Directors, the Holiday Homes Tour committee and as chair of the Wings of Hope Gala held on Friday, May 5, 2017, in the Air Force One Pavilion at The Ronald Reagan Presidential Library.

How did you hear about Cancer Support Community?  I first heard of CSC when I was in high school and my mother joined the Holiday Homes Tour committee.  She signed up my sisters and I to be docents on the tour. Ten years later, I joined the HHT committee and have been on it ever since.

How has cancer impacted your life?  I lost my father to lung cancer when I was just 7 years old.  It was a very difficult time for my sister, mother and I. We were living in Illinois at the time and I wish we had a cancer support group we all could have participated in together.  I feel it would have been very beneficial to us.

What do you find most rewarding about your volunteer work with CSC?   Even though I have not been a participant in CSC, I truly believe it is such an amazing organization.  To hear all the stories and witness how CSC has helped so many people, including children, makes me realize all the efforts and fundraising my family and I contribute makes it all worth it.  I have also made many new friends who share my same passion for charity involvement in our community, many who also work full-time jobs and always find a way and time to make it a part of their lifestyle.

What are you working on right now for CSC? I was very happy to be part of the Holiday Home Tour committee again in 2016, it was such a successful event.  I also joined the Board of Directors in the fall of 2016 and I am excited to be the 2017 Gala Chairperson.  I have attended the Gala for the past 10 years and look forward to working with this dynamic group to put on an amazing event, this year at the Ronald Reagan Presidential Library on May 5, 2017.


SAVE THE DATE
Wings of Hope Gala
Friday, May 5, 2017, at 6:30 pm
The Ronald Reagan Presidential Library, Air Force One Pavilion

gala-small-header

Click Here for tickets, Sponsorship Opportunities or to advertise in the Tribute Book

Member Spotlight -Danielle Rosoff

Dear Cancer, It’s Me

View More: http://nikkimcfadden.pass.us/dear_cancer

Danielle Rosoff: 2016 First Place Personal Category Winner

by Danielle Rosoff

 

 

I Won’t Let You Win

Dear Cancer,

It’s me: the girl whom you first visited fourteen years ago.

Dear Cancer,

It’s me: The girl who fought you and won thirteen years ago.

Dear Cancer,

It’s me: Danielle Rosoff.

On October 19, 2001, when I was only fourteen months old, you came to visit me and changed my life. I was diagnosed with stage three Neuroblastoma. Even though I was too young to remember when you first arrived, I remember everything that came in the years afterwards. When you first came to visit, you manifested as a fever. Since I was my parents’ first child and had never been sick before, they were nervous and took me to the doctor right away. The initial doctor’s appointment was on a Monday, and the doctor said that if the fever didn’t break we had to come back in three days. I continued to have a fever, and so we returned on Thursday. The doctor said I didn’t look well, and ordered a blood test. He said he would have the results the next day.

On Friday, we returned. He said the blood test showed inflammation and ordered an abdominal ultrasound, because I had had an extended belly for weeks (although he had previously done a physical examination of my belly and said there was nothing to worry about). Well, Cancer, although you had been here for a while, you finally made your presence known to us, and the fight began.

Round One: I was admitted that very same day to Children’s Hospital Los Angeles, where my doctor saved my life. Luckily, my doctor found you and figured out what you were before it was too late. My parents were terrified. You came out of nowhere. Their baby had fallen victim to you. During the time of diagnosis, I had many tests including a needle biopsy and an exploratory surgery to determine just how bad you were. The results of the needle biopsy showed that the cells had burst, which suggested that they were weak. Therefore, Cancer, the doctors said that there was a 50/50 chance that you would win this fight. Because the cells had burst and they couldn’t properly stage you, the surgeons did an exploratory surgery through my abdomen. The results of this test suggested that my type of Neuroblastoma was better than they had anticipated. In fact, I was the first child in the history of Children’s Hospital Los Angeles to show favorable treatment characteristics of the tumor, which meant that I had a better chance for survival. I was lucky. Each year, only eight children in a million get diagnosed with good genetic indicators, and I was blessed to be one of them.

Round Two: Beginning in late October 2001, I had several minor surgeries followed by six rounds of chemotherapy and a tumor resection in March 2002. The doctors thought that the surgery was very successful and that you had been fully removed. However, because we couldn’t know whether or not you were still there microscopically, we followed surgery with two more rounds of chemo.

Round Three: Ultimately, it was a knock out! I beat you, Cancer, however I continue to have testing at least once a year. I have been free of you for the last thirteen years. As you can imagine, the fight against you was hard mentally, physically, and emotionally for both me and my parents. As a result, you have changed my life for better and for worse.

On the positive side, the fact that you took over my body for a year has led me to want to help people and to be an activist in many cancer organizations. So, I guess this letter is a thank you note. Because, of you, Cancer, I get to go to my home away from home each year Camp Ronald McDonald for Good Times. This is a camp for cancer survivors and their siblings. Camp has also changed my life, but in a completely positive way. It gives me an opportunity to meet others who have been in similar situations. I get to meet people who have struggled, and continue to struggle, the same way I have. At camp, there are many kids who continue to fight you, Cancer, and many kids have disabilities due to their treatment. Camp provides me the space to offer other campers assistance, to talk or listen to other campers, and to offer a hug to someone in need.

Cancer, I don’t think that you know everything about me. My third grade teacher was a special person, whom I learned was also a cancer survivor. Because of her, I felt comfortable enough to ask her to assign our class an activity to support pediatric cancer patients currently in the hospital. My class wrote letters of support to the inpatient kids at Children’s Hospital Los Angeles. That same year, I decided to donate my hair to “Locks of Love.” Afterwards, my hair was so short and my glasses so old looking that people teased me and called me “grandma.” I didn’t care, because I knew that I had helped someone in need. You see, Cancer, you had made me strong. Third grade was also the first year that I participated in Relay For Life, which is the American Cancer Society’s major fundraiser. To this day, Relay continues to be one of the major ways I help support the cancer community. You won’t understand this, Cancer, since you tend to take things away, but it feels great to give. I want to get rid of you forever, Cancer, so that you can’t ever drain the life of another person.

Finally, Cancer, you have also impacted many of my family members, both negatively and positively. Although painful, the experiences have given me the opportunity to provide love and support. My maternal grandmother and grandfather have been victorious over you, Cancer. During their battles, I showered my grandparents with constant love and support, just as they had done for me. My grandmother saw me beat you, and with my constant words of encouragement, her willpower, and the doctor’s skill she knew that she could beat you just like I did. On the other hand, my paternal grandfather lost his fight with you, Cancer. Unfortunately, he was diagnosed with stage four pancreatic cancer. He was initially given four to six months to live, but, you took him in just twelve days. I like to think that, because I had cancer, I was able to talk to him about it and connect with him on a higher level due to our shared experience. Overall, my past has led me to feel empathy and compassion towards others. Because of my history, I believe I can help people who are going through cancer. I know that a kind word or a smile can make all the difference in someone’s life.

On the other hand, cancer, you have also changed my life for the worse. Even thirteen years into my remission, I still have to go to the hospital at least once a year. I go through blood tests, heart ekg’s and echocardiograms, hearing tests, and multiple other tests because of you. Next, the doctors believe that the chemotherapy that I endured during my brain’s development has affected my learning, memory, and attention. As a result, I need to work double or even triple the amount that others need to work to retain information and do good work. Finally, even though I don’t remember you in great detail, Cancer, I still remember you as the most terrifying experience in the world. I remember lines being shoved up my nose, having to drink terrible tasting liquids, the horror of being at the hospital, and the terrors of a needle. To this day, I won’t drink juices and still fear needles as one would expect.

Because of my experience with you, Cancer, when I grow up I would like to be a psychologist so I can talk to people battling cancer and other diseases in order to help them cope with their struggles. Furthermore, I think that one of the greatest medicines (besides actual medicine!) is laughter. That’s why I also want to go to hospitals to visit patients and make them laugh and be happy.

Cancer, you have changed who I am as a person. Thank you for making me compassionate, caring, thoughtful, and interested in the well-being of others. Most of all, thank you for giving me the gift and the ability to enjoy life to the fullest. Without you, I would definitely not appreciate life as I do or have the wisdom to make well thought out life decisions.

Thank you.

Dear Cancer,

It’s me: the girl whom you first visited fourteen years ago.

Dear Cancer,

It’s me: The girl who fought you and won thirteen years ago.

Dear Cancer,

It’s me: Danielle Rosoff, and I won’t let you win.