Inspirational Moments: We are not alone

Hello my name is Marissa and I am a chemotherapy infusion nurse at Providence Centralia Hospital’s out-patient infusion center in Lacey. I have been working there for a year and half and prior to that I worked on the Oncology unit at Providence St. Peter’s Hospital.

I recently got the opportunity to participate in the Susan G Komen 3 Day Walk for the Cure. The whole experience filled me with awe to see all the people there walking to support a loved one or who were there because they themselves were survivors, and humbled me at the thought of all the people that were there to help fight against this disease. There were 1,300 people that participated in the walk.

It was amazing to see the community that was created in such a short period of time, everyone supporting one another, encouraging those that they met to keep going and letting them know that they can do it. At the end of each day everyone would gather round the finish line to cheer on the last walkers coming in.

To see such a show of support for one another was a reminder of how we are not alone and we are a part of a something bigger than just ourselves.

   

Have you ever participated in a walk? We'd love to hear about it in the comments!

If you'd like to learn more about the Susan G. Komen 3-Day you can visit their website.

It was a Sunday morning...

Editor's Note: We are honored to have A.W. Gryphon share her story of diagnosis with us.
Allison W. Gryphon is an Author, Filmmaker, Creator of The Why? Foundation and a Breast Cancer Survivor. You can also find her on facebook >>

It was a Sunday morning. I’d been up early for a pilates class and I was just out of the shower. I had brunch with my friend Joaquim and a matinée with my standing weekend movie buddy, Elissa.

Getting dressed, I went to put my bra on and it didn’t quite fit right. I re-adjusted and then I froze. I was standing in front of my closet in a small room that suddenly seemed massive and empty… and painfully quiet. I think when someone feels a lump for the first time and they know in their gut what it is, the world does truly stop spinning, just for a moment. Just long enough for you to hear your own heart beating, to feel what it means to take a breath and to know not only the full weight of your body, but of your being.

It was Sunday morning so there were no doctors to call or appointments to be had. It would be something to be taken care of the next day. Everything would change. I knew that. So I got myself dressed and went out for a lovely brunch with Joaquim then off to see Julian Schnabel’s new movie with Elissa. I said nothing to my friends and it was a wonderful. The presence of the lump was never far from my thoughts, but I wanted a day of love and friendship, not fear and concern.

My Monday began with a trip to an Urgent Care Clinic, the fastest way I could get the referral for a mammogram. I was at a highly recommended breast center at 7am Tuesday morning. First there was the mammogram, during which the technician suggested we take a few extra views for the doctor, then came the ultra sound, then the doctor, then the second ultra sound and then the smile. That smile of hope and encouragement and knowing how much trouble I was in that I will never forget. “We’re going to do a needle biopsy.” The wonderful doctor said kindly taking my hand and meeting my eyes to hers.

I don’t know how to describe what was going through my head at that moment. Everything. Nothing. I knew what it was and I knew it was happening, but I hadn’t connected those thoughts. It was like I was watching a movie, but it was me.

The following day, I went to work. I went to normal. That’s what I needed to do. Just before lunch my phone rang. It was the same lovely doctor who’d done the needle biopsy the day before. “We were all pulling for you.” She said… And then she told me what I already knew was coming.

It’s one thing to know what’s coming, it’s another matter all together to hear someone say it out loud. Someone you don’t know, but who in one instant will have changed your life forever. I know that what followed were words of support and encouragement. I don’t remember them. I do remember hanging up the phone and looking at the buttons, not quite sure what to do with them. The room was heavy and there were people on the other side of my closed door waiting. People who had assured me that everything would be ok, not just for me, but for themselves. There were friends, colleagues, people I cared about and people I didn’t know out there. Everyone who the explosion was going to hit once I opened the door.

It took almost a half hour. I looked at the door for a long time. It was real for me, but once I opened that door it would be real outside of that room.

The first person I saw was Jude. She was sitting in a chair right outside wide-eyed and steady. I’m not sure if they were all there already or if they heard me come over, but within a moment Shannon, Mary Beth and Jackie were looking back at me amongst a busy office full of people who were about to find out.

I don’t know if the assault of the cancer on me or of the news on everyone else was more jarring. What I do know is that’s the day where I found out what I was made of and when I found out who all of the people on the other side of that door really were.

It was the most devastating and beautiful day of my life. And that is how my battle with stage IIIa breast cancer began on Wednesday April 13, 2011.

Profiling the beginning of Providence Integrative Cancer Care

Recently our very own Rosemary Spyhalsky, Nurse Coordinator for the Providence Integrative Cancer Care Program was profiled by the Oncology Nursing Society’s Special Interest Group for Complementary & Integrative Therapies.

As a passionate advocate of integrative cancer care, Rosemary is board certified in both oncology and holistic nursing. While the focus of the article is meant to guide Rosemary’s peers in starting their own integrative cancer care programs, we thought it was important to profile some of Rosemary’s main points:

The history of our program
At the time when the idea first came to Rosemary to pursue offering body-mind-spirit care to patients, this was a relatively new concept. Some of the major cancer centers offered services such as acupuncture, massage, yoga, etc, but there was nothing like this in the any of the cancer centers located in the South Sound, and the medical community was very skeptical about the benefits of such services. After 3 years of research and work behind the scenes, the program got off the ground in 2007 with oncology massage, yoga, a nutrition class, and acupuncture. Naturopathy was added a year later.

The benefits of connecting the complementary services to medical cancer treatments
According to the National Institute of Health almost half of all Americans use at least one complementary and alternative medicine in addition to their regular medical care, but most do not tell their providers. Having the Integrative Cancer Care Program embedded into Providence Regional Cancer System is a valuable resource for patients. Patients have convenient access to complementary services to utilize in conjunction with their medical cancer treatments and may share more openly with physicians about other treatments they are using if they see such services offered within the cancer clinic. Services offered are safe to use in conjunction with conventional medical care.

The importance of licensure
Establishing requirements for providers was assisted by the fact that in Washington state naturopathy, massage therapy and acupuncture can all be licensed through the Department of Health. Dietitians are certified through the same regulatory body, and also obtain a national certification. In the case of yoga, there is no licensure, so certification through a respected national certification body was a requirement. In addition, when and where possible, specialized oncology training has been sought for providers.

To find out more about the Providence Integrative Cancer Care program please visit the integrative care website at provcancer.org Once there, you can read more about our program, services, and the benefits of complementary care or integrative medicine. You can also view a list of local and national resources by clicking on the Resources tab on the left hand side of the page.

Self-advocacy for Cancer Survivors

Advocacy means to actively support a cause, idea or policy. The National Coalition for Cancer Survivorship (NCCS) argues that advocacy is a continuum that starts at the moment of diagnosis. That is the defining moment when individuals diagnosed with cancer (and/or their loved ones) must play a very active role in assuring that they receive quality care.

When I taught college students I told them it is not a question of whether they will encounter challenges in life; the issue is what tools they carry in their life journey backpacks to help them cope with hardships. The tools that helped us maneuver through school, relationships and career challenges may not work as well when we are faced with a potentially life threatening illness. The most critical tools in the cancer journey are asserting yourself and clearly communicating your needs. As NCCS notes, “it ultimately means that you are taking responsibility and assuming some control of your life circumstances with cancer.” It is about empowering yourself and working with your health care team as an active and questioning partner, not a passive recipient of care. Shared responsibility for your care can enhance your physical, emotional, and mental well-being.

Cancer and its treatment can make you feel that you have no or little control over your life. Being an advocate for yourself can help you regain some of that lost control, build confidence that you can face challenges that seem overwhelming, connect with others, improve the quality of your life, and potentially make a difference in the lives of other cancer patients in your community and beyond. In short, rather than sinking into a helpless and hopeless hollow, self-advocacy can help you climb to a more hopeful and active perch.

Who is a Cancer Advocate? You are!

Just by participating in the Providence Regional Cancer System blog, you are taking an active step to become an informed and communicative decision-maker throughout the cancer journey.

Next steps? Check out the links below:

• NCCS Self- Advocacy: A Cancer Survivor’s Handbook
  This is a fantastic resource that includes the Cancer Survivors’ Bill of Rights and other great information on cancer advocacy.
• NCCS Cancer Survival Toolbox®
  The Cancer Survival Toolbox® is a free, self-learning audio program that has been developed by leading cancer organizations to help people develop important skills to better meet and understand the challenges of their illness.
• Facing Forward: Making a Difference in Cancer (National Cancer Institute)
  If you feel ready to give back to others, this is a great resource on how to get started. 
• Saving Lives Through Advocacy (American Cancer Society) 

Being your own best advocate

I recently agreed to write a short item for a Web site highlighting issues that impact adult survivors of childhood cancer. I was asked to come up with something for the Web site’s “Advocacy” section. I said, “Sure, I can do that,” without really thinking about it, but later found the topic a little challenging.

I realized that advocacy to me meant writing letters to legislators or visiting the state capitol to lobby for a particular issue – neither of which I’d done for any cancer-related causes. As I was struggling with what to write, I started broadening my definition of advocacy. I decided it could also mean just getting the information you need to make good decisions about whatever cause you’re supporting – including your health.

Here’s what I wrote:

I ended treatment for leukemia in 1983 when I was 16. At the time there weren’t many longtime survivors of childhood cancer, and there wasn’t much research about future health problems I might face as a survivor. So over the years it’s been up to me to figure out how new research findings about late effects of treatment might impact my health.

For instance, when I heard that female survivors of childhood cancer might be at risk of second cancers like breast cancer, I got pretty anxious. And when I decided to have kids, I wondered if I’d have fertility problems. But after reading and talking to oncologists, I learned that neither issue was likely to affect me based on the type of radiation therapy and chemotherapy drugs I had received. (Plus I now have two beautiful boys to prove that, fortunately, fertility wasn’t an issue.)

Many resources exist today for people (kids and adults) who are ending cancer treatment – including follow-up plans with information about what to monitor in the future. But I still believe it’s up to each person to be their own advocate, to seek out the experts and information that will keep them in-the-know about their health needs after cancer. For me, making sure I’m informed about medical issues that could impact me has helped me feel proactive about my health and calmed my anxieties about it.

Special Note: Soon after writing the above entry, I stumbled across a great resource about self advocacy from the National Coalition of Cancer Survivors (NCCS). It’s called Self Advocacy: A Cancer Survivor’s Handbook. You can download or order the book for free: NCCS believes that cancer becomes a much lesser foe when faced by informed and knowledgeable health care consumers who know how to communicate their needs to those who can be helpful to them as they experience cancer. This handbook focuses on self-training steps and tools to assist and empower individuals dealing with cancer.