Learning How to Trust My Doctors, by Victoria Moore

Thursday, July 26, 2012

   For some time now I've been debating about whether or not my life would've gone differently if I hadn't listened to my doctors. Would I still be able to tap dance or attend the computer classes I've started taking at the "Venice Skills Center"? Would I still be able to be a member of the MarVista Library Mystery Club? I thought I had pushed this thought to the back burner until July 11 at the Cancer Support Community-Benjamin Center's Writing Group. Scheduled as a committed group, led by facilitator Zena Bartholomew from 1-3 p.m. every Wednesday, the latest change she's instituted -using topic cards from the "GO WISH" Game (www.codalliance.org)- has given me fresh inspiration and a deeper understanding of my present circumstances.
    On that fateful day, when I reached into the yellow ceramic bowl she stores the cards in before we select one, I never dreamed I'd get the one that said, "To Trust My Doctor". To give you a fuller understanding of how much that topic influenced me then I've reprinted what I wrote in class below:
     To trust my doctor or not to trust my doctor? That's not a question for me because my doctors have never given me a reason not to trust them. I really don't think I'd be here if I didn't. They've been there for me every step of the way on my journey and helped me feel as though I always had someone in my corner. They've also reduced and eliminated my fears by visiting me in the hospital, emailing me when they had something to tell me and remaining consistent throughout my treatment.
     I don't know if I'd have been able to face the disease with as much courage as I have without their support. Initially I was afraid of doctors, in general, the hospital, and being sick, but once I got diagnosed with Stage II A breast cancer, I lost my fears and embraced trust.
    The trust I feel for my doctors has affected other parts of my life and I've opened up to others, as well, in ways I wouldn't have before. I've also learned to trust myself more and take more chances. This new openness makes me feel freer and courageous in the face of my new reality. Now when I want to go through an unknown door I do so without hesitation. As a matter of fact I embrace whatever awaits me behind that door. That doesn't mean I tread dancerously and follow dark paths it just means I allow my life to expand as it should.
    Part of the reason I do that is to stay out of a rut and keep challenging myself. I want to keep changing. When I grow internally I want to change externally to match the overall shift. Trust in my own vision is the reason for that and that originated with trust in my doctors. No one told me that I'd become a different person, so I wasn't prepared for it until my doctors and other healthcare professionals explained that I had to to fight my disease. In that case it hasn't been such a bad thing. So now I don't care if I have to trust in my doctors to proceed with a new treatment or on my own path with a new hairdo, clothing style or attitude, my goal is still to reach the next level whether it's towards a healthier future or stronger, more focused life path. Wherever my trust takes me will be alright because it's coming from a good place.

Cancer Support Community Recognizes Supreme Court Decision

Tuesday, July 24, 2012

The following is a formal statement from Cancer Support Community headquarters in Washington, D.C. regarding the Supreme Court's decision to uphold the constitutionality of the healthcare law.

June 28, 2012

The Cancer Support Community, an international nonprofit dedicated to providing support, education and hope to people affected by cancer, would like to recognize the Supreme Court’s decision today to uphold the constitutionality of the Patient Protection and Affordable Care Act (PPACA).

The PPACA contains several provisions of significance to people touched by cancer, including:

Access to health insurance for all Americans – specifically those who are currently uninsured

Elimination of lifetime coverage caps on health insurance benefits

Elimination of pre-existing condition clauses, which previously included a cancer diagnosis

Coverage of young adults up to the age of 26

Coverage for screening and preventative services, including breast, colorectal and cervical cancer screenings

"This is a step toward ensuring that all people touched by cancer will have access to the care they need in the face of a cancer diagnosis," stated Kim Thiboldeaux, President and CEO of the Cancer Support Community. "We look forward to working with our Congressional leaders and community members to ensure that the implementation of the law includes access to comprehensive, quality cancer care that includes the seamless integration of social and emotional care."  To learn more about CSC national, visit Cancer Support Community

WebMD: Help is Just a Phone Call Away - By Heather Millar

Friday, July 20, 2012

The following is an article on WebMD regarding Cancer Support Community's new Open to Options™ telephone support hotline. People affected by cancer may call the helpline at 1-888-793-9355.

Friday, July 20, 2012

Remember the fog that surrounded you right after diagnosis? Remember how difficult it is to become an instant expert on your particular cancer? Remember how difficult it can be to make treatment decisions when you’re shocked, stunned, scared out of your mind? Remember forgetting exactly what you wanted to ask the minute you got into the doctor’s exam room?

We could all use a little support when navigating medical crossroads.

When I was in active treatment, I relied heavily on “Decision Services,” a pioneering program at University of California, San Francisco that helped me get ready for key doctors’ appointments, listing questions and concerns, clarifying test results, and helping me prepare for decisions that needed to be made. Now, that kind of help is available, over the phone, nationwide.

Developed in conjunction with UCSF, Open to Options™ provides professional counselors who help patients develop a concrete set of personalized questions and concerns to be raised with their doctors when a treatment decision needs to be made.

Cancer Support Community (CSC), a non-profit network offering cancer education and support, administers this new, national, toll-free call center. Patients may call the helpline (1-888-793-9355) or make an in-person appointment at one of CSC’s 13 affiliates, mostly in large urban areas.

In a pilot study funded by the Centers for Disease Control, an Open to Options™ specialist helped cancer patients with blood cancers brainstorm to create a list of questions based on their understanding of their disease, their priorities, options, and goals. The data suggested that patients experienced less stress and anxiety and had fewer regrets about their decisions when they received this sort of support. Doctors reported that the program made their interactions with patients more focused and productive.

This new program is based upon the one I found so invaluable at UCSF. If you’ve got a medical decision to make in the near future, check it out.

At the very least, take a look at CSC’s “Tips for Treatment Decision Making.” Briefly, they include:

• Learn as much as possible about your disease and your treatment options.

• Bring someone to your medical appointment to help you focus and to take notes.

• Talk through your ideas and concerns with someone you trust.

• Consult decision-making tools such as the patient guidelines created by the American Society of Clinical Oncology (ASCO).

But if it were me, I’d give Open to Options™ a call.

Getting Un-stuck from the Inside -Top 10 Tips by Regina Lark, Ph.D.

Regina Lark spoke at Cancer Support Community-Benjamin Center this past year. The following are Regina's top ten ways to reduce clutter.

I talk with a lot of people about clutter. I hear their stories about how clutter accumulates. Life transitions - birth, death, marriage, divorce, aging parents -- sometimes knocks you off your game. Many say that they just want to wake up one day completely and utterly clutter-free. Some people tell me they would almost welcome a slight house fire or some flood damage, relieving them of the burden of having to decide how to deal with the clutter.

One of the problems of having too much stuff is not knowing how to deal with the problem. A lot of folks feel stuck when it comes to taking action, or, in some cases, waging war, on the mess and chaos that comes with clutter. "Being stuck" has more to do with what you think and how you feel about the clutter, then about the actual pile of papers. Through my experience as a professional organizer and observer of the human nature, I have come to believe that our clutter could very well be the physical manifestation of negative messages we feed our brain. When we tell ourselves we are stuck (or immobile) we believe the message.

We're already at the end of the first quarter of this year that is no longer new. What is keeping you from creating or moving toward your goal? What did you start the year wanting to accomplish and how is the concept of "feeling stuck" going to make the goal elusive? I say it's high time to get un-stuck so you can accomplish what you set out to do!

And so I offer... the Top Ten Tips to help you un-stick from some of the places where you feel stuck!

1. Quiet the mind and take a deep breath. Accept the situation as it is. It is what it is right now. And it is about to change.

2. Understand these concepts: a) You are not your clutter. b) You are not lazy. c) Clearing clutter means that you have to make regular dates with yourself to get the work done.

3. We tend to look at the clutter as a monolithic whole. But it's easier to manage by looking at it in smaller chunks. So... make a list of each cluttered area in your life (be it physical or emotional) as it relates to feeling stuck. Make the list specific: what's the clutter look or feel like? how long have you had it?

4. We need to acquire knowledge about where we are at right now to make sense of how to work out of it. Drill down some more: How do you believe the clutter prevents you from creating or reaching a goal. How does the clutter make you feel stuck?

5. When have you tried to de-clutter? What time of day? How much time did you give to the task? Write about how you have tackled the problem in the past - what worked and what didn't? Do you keep trying to de-clutter the same way expecting different results?

6. Re-define for yourself the words "failure" and "success." I grew up with ideas about the definitions of success and failure. About a year after I started my professional organizing business I experienced months where growth was slow or felt non-existent. Instead of feeling like a failure I decided to re-evaluate what it meant to be a success. And so I decided that for me, a successful month for A Clear Path is the month I don't have to borrow from my dad. So far, I haven't had to borrow any money from my dad. See what I mean?

7. Clutter has a way of muffling sound, it takes up the air, left alone long enough it'll take on a musty odor. Spend quiet time creating a vision in your mind (or cut from pictures and taped to a poster board) of what your ideally cleared spaces will look like, smell like, feel like, sound like.

8. Think of tackling the clutter strategically. For every hour you take to de-clutter, you need an hour to reintegrate the stuff you intend to keep. Look at the list of your cluttered areas and figure roughly how much time you'll need for each project. Once you start the process, you'll know soon enough if you're in the ballpark.

9. Get your calendar and start making dates with yourself to clear the clutter. This is really important. Commit. Commit. Commit. Look at the big picture; be realistic. Do you have a lot of time off in the summer? Are you able to devote 2 hours every Saturday? Once a month? When do you feel most "up?" Are you a morning or night person? Schedule the sessions to give yourself every advantage.

10. Habits: To keep the clutter away you may have to change a few habits. If you habitually drop your clothes on the floor at the end of the day, you may want to change how (or where) you change into your pajamas. You may have piles of mail that's easily identified as trash for recycling. Think about sorting mail near the recycle bin before you even bring it into the space. If mail is dropped through a slot, sort it on your way to the household recycle container.

5 years later...

Friday, July 13, 2012

On Thursday, July 12, 2007, I was diagnosed with stage 3 locally advanced ductal carcinoma of the triple negative kind. Back then, those were just a bunch of big words that I didn't understand. I could not have foreseen the impact that diagnosis would have on my life. But here I am, five years and one day later, Friday, July 13, 2012, writing these words. And where am I exactly?

I'm at gate D24 in the airport at Toronto, waiting for my flight back to Vancouver. I was here for a cocktail party given by my literary agency. Yes, I came all this way for a cocktail party for my own personal celebration (though no one else knew it as such). You see, this year has been a big year in a good way. I got my Canadian citizenship, I got my MFA degree from UBC, and I finished writing my first memoir. Originally, I was writing a memoir about growing up with the scant memories my parents shared about the Vietnam War and how I unearthed more history and stories as I became older. But when I was diagnosed with and treated for cancer, those stories and experiences became more layered and profound. Because my parents so generously came to help take care of me and my family during my treatment, I began to identify with their histories in a new way. Throughout my treatment, I experienced isolation, solitude, disorientation...psychic chaos. Everything that I had believed in about myself was being challenged. And it wasn't just a struggle for me, but for everyone around me. Five years later, I'm grateful for my parents for coming to live with me for almost a year, but admittedly, back then, I wasn't.

When I finished treatment and got through my surgery, I thought life that would resume as planned. I'd go back to school, write the book I had intended to write, graduate, and live happily ever after. Of course, we all know that's not what happened. I went back to school, started writing a new book about my cancer journey and how I began identifying with my parents' experiences...and then my marriage fell apart, and I stopped writing. A little over a year after my bilateral mastectomy, I attempted suicide. Then I did the work to get better, tried to pick up the pieces, and move on.

Still, the writing was nonexistent, while life kept happening. But the more that happened, good and bad, the more I kept seeing my life paralleling my parents'. And when I was ready to truly heal from all the devastation, the writing started up again. The result is my book, What Doesn't Kill Me.

As heavy as all that sounds, I can assure you that there's plenty of hilarity in the book, or so I've been told by those who have read it. I've had the tremendous fortune to have a number of agents offer to represent me, and I believe I chose the perfect agency, Anne McDermid Agency. Her team has been fantastic in the early stages of putting together a package to shop around to the publishers. I'm really excited to see that this is all coming together. My wonderful husband, Anton, is creating my website, and you can sneak a peek at brandyworrall.com. It's not finished yet, but we hope to launch it in a couple days. Also, if you haven't already done so, hop on over to Facebook to like my author page, Facebook.com/brandylienworrallsoriano.

So I'm here in Toronto, waiting to go back to Vancouver, where upon arrival, I have to go to the emergency room! Sadly, five years later, I'm still dealing with medical crap. In May, I had two procedures done. One was called a capsulotomy, where my plastic surgeon, who's been with me from the beginning, opened up my right breast and scored the hardened scar tissue. Hardened tissue in the breast is a long-term effect from radiation (which no one bothered to tell me about back then), and the tissue became so hard that it was causing pain. My surgeon told me it's very possible that she will have to do this again in the future.

The second procedure I had done was a hernia repair. Because of the mesh in my stomach not bending when I was pregnant with Moxie, I developed a hernia two inches above my bellybutton. Two weeks after surgery, I noticed that my belly had a waterbed effect. Apparently, I developed a seroma, which is a pocket of fluid built up in a cavity where there was surgery. I saw my plastic surgeon four times, during which she used a gigantic syringe to drain the fluid. She then decided that perhaps it'd be best to insert a drainage catheter and leave it there until the fluid cleared up.

Unfortunately, I developed a nasty infection that won't go away no matter what. That's why I have to go to the hospital after I get off the plane. Way to celebrate the fifth anniversary of my cancer diagnosis, right? It's too fucking fitting, is what.

But hey, I'm still here. Some of the friends I've met along the way these past five years are not. After I get off these damn antibiotics, I'm going to drink to them and to this crazy gig called life.

- Posted using BlogPress from my iPad

New website lists local resources for cancer patients and caregivers

Wednesday, July 11, 2012

Are you or someone you care about in need of a cancer support group, transportation for medical treatments or financial assistance with prescription drugs? Locate resources for these needs and more on the recently launched website www.CancerResourceGuideNCF.org. The Cancer Resource Guide of North Central Florida is a public service of North Central Florida Cancer Control Collaborative (NCFCCC), WellFlorida Council and the Florida Department of Health Cancer Control Program.

The Cancer Resource Guide of North Central Florida, compiled by WellFlorida and NCFCCC, includes support groups, community and caregiver resources, financial support services and tobacco cessation activities throughout  the region. The website also links viewers to national organizations and their websites. The online guide lists a wide range of cancer-related resources: summer camps for children with cancer; sources for breast prosthesis and wigs; and medical assistance for individuals who are uninsured or under-insured, including low cost/no cost mammograms.

Through workshops, successful grant applications, regional cancer data and communications tools (such as The Cancer Resource Guide and The Cancer Resource Blog), NCFCCC supports the region's cancer community with resources, networking opportunities and education. Oversight and leadership of NCFCCC is provided by WellFlorida. To learn more about NCFCCC, WellFlorida and The Cancer Resource Guide of North Central Florida, visit www.CancerResourceGuideNCF.org.

Cancer Connections

Mark your calendar for the next Cancer Connections meeting on July 25 from noon to 1 p.m. Jeri Francouer of the Florida Breast Cancer Foundation will be presenting. Cancer Connections meets monthly at the Hope Lodge in Gainesville, FL.

Breast Cancer Recovery Walking Meditaion

Monday, July 2, 2012

Well there are many of us who just don’t or can’t sit still.  The mind takes over and we struggle with quieting ourselves.  We can’t sit, we need to move around so why not a walking meditation.  The picture I shared of a path in the woods is from my morning meditative walk with my dog, “Happy Riley”.   We both so look forward to this time.  He smiles the entire walk.

To begin YOUR walk you need to be conscious of your footsteps, and your pacing.  You want to breath in feeling the your expand inside you and walk with slow and deliberate steps.  Feel the earth under you feet.  Notice if you feel light or heavy.  Is your chest lifted or is it drooping forward?  Be as comfortable as possible. Now notice everything.  Let you vision expand to every space.  Smell the air.  Is it crisp?  Is there a breeze? Notice everything.  Just be mindful of your surroundings.  Now notice your breath.  Without taking control of your breath, allow it feel natural and satisfying.  Let your arms and hands dangle to your side body or maybe in your pockets.  I personally love pockets.  Feel your inhaling breath come and expand your chest; now let your exhaling breath release thoughts that may take you away from this walking meditation.  Walk if you can for 15/30 minutes.  Then when you reach home see if you can sit comfortably and quietly for 5 minutes.  Set an intention for your day. This could be the start of a great restorative walking meditation. 

By: Diana Ross, E-RYT 500
Founder: Breast Cancer Yoga

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