Navigating the storm ... I'd like to help

My name is Pat. I am a nurse navigator for the Providence Southwest Region. I have never written on a blog before, so here goes.

As I have started into my new position I have had the urge to write about something that I thought I would never tell anyone, this secret I have carried with me for the past 16 years. I asked permission from my husband to share this.

Sixteen years ago I had an illness. I could not work. We went through financial devastation. I am writing about this because I know some of you are in a very hard place right now, and it helps to know that someone not only understands but also that someone has been there before.

I was a working mother, I was proud that I was able to help care for our family financially. One of my contributions was to purchase the groceries and prepare meals for our family, so going to the grocery store was very difficult for me. With our money I was only able to buy milk, eggs and macaroni and cheese. I wanted to be invisible as I watched other shoppers filling their shopping carts as I once did. I remember not only being sick, hoping I would one day be well, but also feeling broken and ashamed that I could not care for my family as I once did. If you have felt any of these emotions, I wish I could reach out and dry your tears.

What nurse navigators do is we help you through these times, we help with resources, we help you understand what is happening, we are there to make sure that things are moving along regarding your care, we are that person that stands by you as you travel on this unasked for, unexpected journey. We’re also the person who can sit with you and share a cup of coffee, just to be present in those difficult moments.

My name is Pat Himlie, thank you for allowing me to share my secret with you.

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.

Orientation dinners for new cancer patients

Don't forget! Tomorrow night is the first Survivorship dinner of 2011 in Centralia.

Cancer patients and a guest are invited to a complimentary dinner sponsored by the Providence Regional Cancer System.

Cancer experts will share what to expect – from diagnosis to treatment and beyond. You'll also have a chance to ask questions, and you'll receive materials to help navigate the path ahead.

Non-Providence patients are welcome, too.

Dinners will be held from 6-8 p.m.

To RSVP, call 360.827.8589 or register online or visit www.provcancer.org

Upcoming Events

• Feb. 17 – Lewis County Cancer Center
• April 5 – Providence St. Peter Hospital
• June 7 - Providence St. Peter Hospital
• June 16 - Lewis County Cancer Center

Need directions for tomorrow night? Click here  >>

Look Good...Feel Better

Makeup is as old as the pyramids—literally. Archaeologists have found makeup jars in the Egyptian tombs, and of course, one look at the tomb painting reveals the heavy appreciation for eye liner both men and women seemed to have.

Chalk was used in Roman times to whiten complexions and women in Elizabethan England wore egg whites on their faces to provide some shine. Even the Victorians, who believed makeup was for those of ill-repute, used natural products of oatmeal and honey to cleanse their face.

Regardless of how or why you use makeup or keep your face clean it’s hard not to argue, when we look good we feel better!

The Look Good…Feel Better was developed in 1989 (read the full story here) and is both non-medical and brand neutral. Those who come receive a free kit with everything you need to cleanse, tone, moisturize, blot, dab and apply products for your face.

Some things we learned in the most recent class at Providence Regional Cancer System, Lacey, taught by Madelin KolbWhite, owner of Merle Norman Cosmetics and Look Good…Feel Better Instructor for over 20 years.

• Cleanse your face twice a day … did you know the average household collects 40 pounds of dust a year?
• Always follow your cleanser with a toner. Toner removes the residue left behind with cleanser. Madelin did a test in her store and found that you would have to rinse your face 37 times in order to accomplish what toner does in 1 swipe.
• Once you open and use mascara you must throw it away in 3-4 months, regardless of whether it’s finished as it is growing bacteria.
• If your under eye is purple use a concealer with a yellow base, if it’s red use a concealer with a green base (but careful, using to much could make you look grey).
• If you are going through chemotherapy do not stay in the sun for more than a few minutes, always wear sunscreen with SPF 15 or higher (even in the Pacific Northwest!)

Want more? Check out Look Good…Feel Better’s brand new re-designed website which includes:

• 12-Step Beauty Guide
• Hair and wig tips
• Video Library
• Online makeover application

Want to find a class near you? They are offered through all three of our PRCS locations in Aberdeen, Centralia and Lacey. To register today call 1.800.227.2345.  

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• Free comfort cap pattern
• Soup ladies warm hearts of cancer patients
• What happens in a yoga class for cancer survivors?