Tuesday, January 29, 2013

Finished with Cancer Treatment…Now What?! Creating Your Cancer Survivorship Care Plan!

By Tambre Leighn, MA, CPC, ELI-MP (guest blogger)
Ring the bell, hug the nurses goodbye.  Part of you is celebrating and another part is wondering, now what?

A recent report by the Center for Disease Control, announced the great news that overall trends show lives lost to cancer are decreasing.[1]  This corollary of this is that more people are living longer as survivors…often dealing with significant challenges as a result of their cancer or treatments.

Finally, there is an increasing awareness that while the end of treatment is a milestone, it is not the finish line and, in many ways, it is just the beginning of not only recovery from cancer but recovery of your life. 

Now what?  A cancer survivorship care plan is a great place to start.  It’s now considered standard of care according to the Commission on Cancer 2012 New Cancer Program Standards The Future of Quality Cancer Care.[2]  This is new territory.   It will take time to develop guidelines, systems and processes to support the implementation of this new tool for survivors.

Being proactive requires self-advocacy, which, in turn, requires knowledge.  A basic survivorship care plan includes the following elements:
  •  An organized, thorough and accessible personal health record summarizing the history of your care  including scans, test results, treatment plans, etc.  This personal health record should be portable so that you can bring it to future appointments.  It can be in the format of well-organized physical documents, created using personal health record software – or a mixture of both.
  •   A schedule of follow up care including information on potential late effects of treatment
  •  Guidelines for well being including physical, emotional and financial along with an outline of resources to support you.
If your medical team has not provided you with a care plan even though you’re coming up on the end of treatment or you’re finished, it is up to you to ask.  For more information, check out Livestrong http://www.livestrongcareplan.org/ (also available in Spanish) and my blog post, Survivorship Care Plans ~ Empowerment Through Awarenes.

[1] Annual Report to the Nation on the Status of Cancer, 1975-2009 http://seer.cancer.gov/report_to_nation/
[2] www.wicancer.org/documents/McKellar_1245pm.ppt

This blog post is part of the Resource Roundup series sponsored by Cancer Blog: Lots To Live For! in which the spotlight is shined on a resource that can help improve the journeys of cancer patients and caregivers. Past Resource Roundup stars have included the Annie Appleseed Project, Imerman Angels and Caring Bridge.

Thursday, January 24, 2013

Seize the Days: Interviews with Cancer Patients and Survivors Provide Inspiration

Celebrating the Ways Cancer Patients Add Life to Their Days 

by Evan J. Lipson, M.D., guest blogger  

Dr. Evan Lipson is an oncologist who launched an organization called "Seize the Days" in order to celebrate people living with cancer and explore the ways they make their days meaningful. The project gives patients and their loved ones an opportunity to record and share their stories using broadcast-quality audio interviews, which are available to view at www.seizethedays.org.

Interviews on the website from over 50 patients demonstrate that people living with cancer add life to their days in all sorts of interesting and remarkable ways. Some people strengthen relationships with loved ones, becoming even closer with family and friends. Other people concentrate on activism, starting foundations or fundraising. Some derive fulfillment by creating something - art, poetry, or music. These creations help patients express emotions, leave a legacy, or regain a sense of control.

Dr. Lipson
One of the reasons for developing this site is to showcase the spirit and courage of cancer patients in order to inspire others. In addition, the website provides patients and families an avenue through which they can share and memorialize their stories and those of their loved ones. To learn more and listen to these compelling, touching interviews, visit www.seizethedays.org         

Evan J. Lipson, M.D (oncologist)
President, Seize the Days, Inc., a 501(c)(3) non-profit corporation
You can also become a facebook fan when you visit the website.

To learn about products that can help alleviate unpleasant and uncomfortable side effects caused by chemotherapy and radiation please visit www.LotsToLiveFor.com. This website offers products to soothe and heal radiation burns and radiation dermatitis, combat nausea, help compromised skin, help mouth sores and dry mouth, and more.

Tuesday, January 8, 2013

Imerman Angels - Connecting Cancer Fighters, Survivors and Caregivers

By Jonny Imerman
Chief Mission Officer, Imerman Angels

Imerman Angels provides personalized connections that enable 1-on-1 support among cancer fighters, survivors and caregivers.      

On a Thursday morning in October 2001, my world came to a standstill. At 26 years old, I was diagnosed with testicular cancer. Although the surgery to remove my left testicle went well, it soon became clear that the cancer had spread, or “metastasized”. The disease was making its way up my body.

I knew what was nextchemotherapy -but I did not understand what that meant. What color is it? How will it make me feel? I called my brother. I started sobbing. I could barely talk. My world was shattered. But, I was not going to give up.

My oncologist told me that the treatments might make me sterile. So, I went to a cryogenics laboratory to bank sperm. After that, it was time to start intense cycles of chemotherapy.

The treatment weakened my body and wiped out most of my white blood cells. In fact, I was in such bad shape, the doctors were forced to delay my chemotherapy while my body recovered between cycles. In addition, the chemotherapy caused many side effects: throat sores, mouth sores, skin rashes, dry skin, cystic acne, extreme fatigue, hair loss, numbness in my fingers and toes, and partial hearing loss. But the most damaging side effect was a blood clot that developed in my left arm. The clot formed around my port, a medical implant that was an access point for my chemotherapy. The doctors had to remove my port, pull out most of the blood clot, and then pump me with blood thinners to break up the rest.

At last, after five months of brutal chemo treatment, I thought my fight was over. I slowly returned to the gym, started going out socially, and got back into life. Although I was happy to be alive, every day was a challenge. I did not have as much energy. I looked different. I struggled to find my post-cancer identity. Just as I was getting comfortable with myself, I learned the fight was not over.

Nearly one year after chemotherapy, a routine CT scan showed four tumors along my spine. Rather than risk cutting the spine, the surgeon went in through the stomach. He made an 11-inch incision, placed my organs to the side, and took out each tumor. The surgery lasted for four hours. It was successful, and finally I was freed from the disease and able to begin my road to recovery.

But my journey was certainly not over. I had made a vow to myself during the time that I was battling cancer. I had looked at others in the oncology clinic and realized that I was different. Each day, my room was filled with family members, close friends and my great doctors. With so much support, I did not have a chance to lose hope. However, in many of the other rooms, hope already seemed lost. As I walked down the hall with my chemotherapy IV-pole on the way to the bathroom, I saw other people fighting cancer alone. They were lying in bed, motionless, watching television or staring in space. Their only stimulation was a nurse checking in for a minute or two on the hour. I knew this was not right. It upset me.

So, my vow was to start helping my fellow fighters in the simplest way that I could. I walked into the other rooms, one at a time, and introduced myself. “Hey, what’s up, I’m Jonny. What’s your name?” Although they were exhausted just like me, everyone was friendly and welcomed my conversation. We shared stories, emotions, and different opinions about many things in life. Our common bond? We were all fighting for life.

Although I had my network of support in my family, friends and doctors, once I started introducing myself to these fellow fighters I realized that they were providing me something valuable that my caregivers could not. From deep discussions about the fears with fertility issues, to simply learning that sucking on Lemonheads candies alleviates the metallic taste from chemo, talking to others who also faced cancer was a powerful, insightful and uplifting tool.

I wondered: “What if every cancer fighter could talk to a cancer survivor who was uniquely familiar with their experience; who not only had beaten the same type and stage of cancer, but who also was the same age and gender as the fighter?” The cancer survivor would be an angelwalking, living proof that the fighter could win, too. What an amazing connection. This is why I created Imerman Angels.

What does Imerman Angels do?

Imerman Angels carefully matches and individually pairs a person touched by cancer (a cancer fighter or survivor) with someone who has fought and survived the same type of cancer (a Mentor Angel). Cancer caregivers (spouses, parents, children and other family and friends of fighters) also receive 1-on-1 connections with other caregivers and survivors. These 1-on-1 relationships inspire hope and offer the chance to ask personal questions and receive support from someone who is uniquely familiar with the experience.

The service is absolutely free and helps anyone touched by any type of cancer, at any cancer stage level, at any age, living anywhere in the world. Imerman Angels is a federally registered 501(c)(3) not-for-profit organization.

Visit www.ImermanAngels.org for information on how to support or join the network of cancer fighters, survivors and caregivers.

Today, we have the largest network of cancer survivors in the world; more than 4,000 cancer survivors and over 1,500 caregivers. They live in all 50 states, and over 60 countries.

We help thousands of families with cancer, across the world, every year.

1-on-1 cancer support works for one reason: we all BELIEVE.

Jonny Imerman, founder of Imerman Angels
No one should fight this disease alone. 

The author, Jonny Imerman is a young adult cancer survivor who strives to make sure no one fights cancer without the support of someone who has already triumphed over the disease.  After being diagnosed with testicular cancer at the age of 26, Jonny decided to found Imerman Angels, a non-profit organization, which carefully matches a person touched by cancer (a cancer fighter or survivor) with someone who has fought and survived the same type of cancer (a Mentor Angel). Imerman Angels now has more than 4,000 cancer survivors and more than 1,500 caregivers in its network, and has been featured by dozens of news organizations including The Wall Street Journal, Harpo Radio’s “Oprah and Friends” with Dr. Oz, Men’s Health, NBC5 Chicago, CBS2 Chicago, ABC7 Chicago, ESPN Radio Chicago, Chicago Tribune, Chicago Sun-Times, Detroit Free Press, LIVESTRONG Quarterly, and Clinical Journal of Oncology Nursing.  Jonny received a 2012 CNN Hero Award; 2012 Lincoln Park Young Professionals ‘Chicago Best of The Best’ Award; 2011 Twilight Foundation Detroit’s Civic Leadership Award; 2011 Chicago Social Magazine’s ‘Who is Chicago’ Award; 2010 Jefferson Award for Public Service; 2010 University of Michigan Humanitarian Service Award; 2009 Ulman Cancer Fund For Young Adults ‘Hope Award’; and 2007 Daily Candy ‘Sweetest Thing’ Award.  Jonny has been invited to speak at cancer centers such as MD Anderson, Memorial Sloan-Kettering, Mayo Clinic, Dana-Farber, City of Hope, Northwestern, Rush, and Children’s Hospital Los Angeles.  Jonny grew up in Bloomfield Hills, MI and lives in Chicago.
Visit Imerman Angels at: www.ImermanAngels.org
Follow Imerman Angels on twitter: @ImermanAngels

This blog post is part of the Resource Roundup series sponsored by Cancer Blog: Lots To Live For! in which the spotlight is shined on a resource that can help improve the journeys of cancer patients and caregivers. Past Resource Roundup stars have included Creating the 10 to Thrive eBook, Annie Appleseed Project and Caring Bridge, among others. To view products that can help alleviate the unpleasant and uncomfortable side effects of chemotherapy and radiation please visit www.LotsToLiveFor.com.
Lots To Live For, Inc. ~ Comfort, Hope, Inspiration

Help to spread the word about Imerman Angels by winning a free T shirt like Jonny is wearing above - visit www.facebook.com/LotsToLiveFor and "like" the both the page, and the link for this blog post to be entered in a raffle. The contest will end on 1/22/13 and the winner will be announced on 1/23.