Archive for July, 2014

#NEGU: never ever give up!

July 18, 2014

The factory was still the same circus act although a bit improved for me since I had one of the happiest nurses. It was a long day that only once did I have a slight panic and needed to get air. I have to say that they were trying. Small changes happened, but complaints from the nurses center ring were heard. We cannot expect changes to happen overnight. Hey, someone even asked if we had kids?! AND asked how I was! All I know is that I made something happened and I will continue to try to change the factory for the better.

Here are some messages of NEGU from myself and Stuart Scott. Find your sunshine today!



A year has passed since my cousin Margie who was an Ecap (exceptional cancer patient) left us

July 13, 2014

I cannot believe it has been a year. It seems like yesterday. It was really the other day when I was telling my factory tale of clinical trial train I heard her voice answer me.

So, in honor of Margie, I wanted to re-post some of her words which I did post in July 2013.

Here are some of her words to me:

“You’re strong and your fighting spirit will take you far. I BELIEVE in you, love you. After you read this you’ll start to see how often God winks at you.”

“Whenever I’ve gotten discouraged or a little blue, I come back to the teachings of this book. (The Triumphant Patient by Greg Anderson)

I believe you’re strong without a doubt. Keep doing whatever you’re doing. You’re amazing!!! I know we’re going to be old ladies talking about this in 30 years as part of our past…just another bump in the road of life. I love you. Margie”

“Here’s another inspirational book (There’s No Place Like Hope, Vicki Girard) I want to share with you, I stumbled upon it and am reading it now. Your wonderful attitude will continue to help you heal and HOPE!!!

There’s a lot of hope to go around, love you Margie”

From her chapter in the book, Faith, hope and healing by Bernie Siegel, Inspiring lessons learned from people living with cancer.

A  New Autumn by Margaret Shane,

“My once idealistic expression is more soulful and serene yet full of hope and excitement…. At times I was discouraged, sad and worried. However I decided early on that it wasn’t going to beat me, and the gifts that have come from it have far outweighed my actual illness… My faith in both god and myself deepened, I felt like a large net was holding me up, orchestrated with angels circling, taking turns to catch my fall, to help me beat back the fire when I felt it circling me. Those angels are my family, friends, fellow cancer survivors, doctors, nurses, and even strangers….Cancer is scary, but not as scary as I thought it would be…I’m sure that stubbornness and a strong will have helped me over the last four years and will continue to do so…. I see the world with different eyes…I’ve had to let go of some left brain thinking, so that I can open up more to trusting my heart and spirit. Not looking at the “shoulds” or “coulds” but what is right and true for me. I’ve had to honor and value myself like never before….fighting this disease has helped me find my passion for living fully again.”

Bernie Siegel’s reflection on Margie’s piece

“Cancer reminds me of water in the way it has the ability to reflect back certain truths to you…your body is aware of how much time you spend fighting versus nurturing yourself… When you nurture your body, mind, and soul, growth and healing occur within you, …So never stop planting and cultivating your seeds of life, though cancer may been seen as compost, remember how it helped Margaret to find her passion for living her life fully again.”

The world has lost a very special warrior, a cancer soul sister, a cousin, a friend, and my hope is today when you see some beauty in the day you say a prayer for all those fighting to survive because that is what Margie would have wanted. Lastly, I hope you find your passion for living your life fully each and every day. Margie always did that and taught me to do the same.

How to be the voice of many

July 10, 2014

commitment*note: except when it comes to providing chairs!

Being a lab rat at the factory, I have the luxury of being a professional cancer patient with a voice to speak for many. Since I have been in other clinical trials and visited many cancers centers especially in So Cal during the 4+ years, I feel that my observations are valid and true. What makes a difference to most cancer patients no matter where they are in the process of treatment is just a little compassion and kindness which goes a long way. This tiny bit of patient centered care is critical to the successful treatment of patients. This includes the staff at the desk when you sign in, the person who takes your blood pressure, the nurses, and any other staff a patient encounters. Last week, I had the opportunity to see an old friend who happens to be the chaplain at both the factory and closet. We laughed as usual and talked about the factory. Now, the factory has the reality of being the picture of what is happening in the world with the increase in the number of cancer patients to treat. I’ve talked before about the infusion center being “sold out” and unable to make an appointment as if I am getting my hair done instead of chemo. There is a fine line of how to treat and care for the growing population of cancer patients while focusing on the individual. UCLA Westwood does have that balance with the nurses taking the extra moments listening, advising, and caring for each patient. The problem with this care is that this often creates delays for other patients. I’m sure this is a difficult thing to manage, but cancer patients require a different type of care. I know moods and attitudes can change the overall health of a patient. A slight pain becomes sharp and unbearable. A slight concern turns into a crisis. A bit of worry turns into a tearful panic attack. Small efforts can make a huge difference. I know I have complained about the loaded question of, “how are you feeling?” When no one asks, it seems that no one cares. I received a call from the factory supervisor. She completely understood what I was saying and assured me that things will change. At first, she questioned my concern regarding the level of care I was getting. This is a puzzling area as I am getting excellent medical care, but missing the human care. She laughed at the way I explained the factory to her even using the words factory and processing.
This brings me to yesterday. After a very long drive on the 405 with 5 accidents. A drive to UCLA is never easy or simple. Plus, in Santa Monica there is the added search and hunt for parking. Jim dropped me off. I entered the waiting area which holds about 50 people and it was full. The level of anxiety was high and faces were filled with worry and concern. Caregivers were checking watches and making comments. I walked to the sign in desk where 3 people sat head down and not one looked up, acknowledged me (or anyone else), and  no words were said by the head downers. I waited a full minute watching the clock tick passed each second hand. I also used the harsh stare as if they could possibly feel my glaring eyes. I gave up and decided to use the restroom in case I was in the DOD (door of death) room as I refused to use that bathroom. When I returned, I noticed the energy hadn’t changed. In fact, the anxiety level had increased and was almost palpable. I decided to keep smiling and tried to make some eye contact. Somehow, I was called and taken back to the standing room only room. My guide explained the sell out crowd. I added it must be a 2fer day or I should have been informed to BYOC (bring my own chair). I scanned the room with a choice of a chair facing the wall and a nicer pod. There was a group of family with a ghostly patient behind me in a wheelchair. I decided to give them the better chair. While I sat, I noticed the energy in this room was even worse. Not one nurse smiling or making eye contact. A nurse in front of me was committing the violation unheard of in Westwood which is using the stool with wheels to wheel herself from patient to patient. Of course, my first thought was that she had an injury which prevented her from standing. Nurses were talking way too loud and yes, most patients weren’t focused on this, but I overheard one nurse say she was going to lose it. I was still trying to figure out who my nurse was. Finally, I caught one nurse smiling and making eye contact.  It was a crazy circus like atmosphere, but not in a positive way. Nurses were huddled behind their station as if they were going to catch something from one of the patients. My nurse arrived on wheels (rolling from the nurses station to my wall facing chair and I had a flash of the movie Wall-e with people on those floating chairs) and never introduced herself, never explained what she was doing. I knew what she was doing, but that wasn’t the point. I asked her what she was doing and explained that I have been doing this for 4 plus years and I like to know what is happening. Her answer was, “I’ve been doing this for 25 years.” Next, she was careless and blood started spraying my chair from my accessed line. She wiped some of it off. I wiped the rest off while waiting. I kept asking questions and asked what tests were ordered. She told me and I responded that one was missing. Wheeling back to the station, she seemed to be having a really bad day or maybe this was the way she “rolls”. I continued to scan the room seeing more patients searching for nurses, caregivers searching for lunch options, and nurses grumbling about everything until I heard them get on the phone to order their lunch. (Were they all on break?) Now, I waited for my results, but could not find the clinical trial person or the doc or my rolling nurse. I made eye contact with a person standing at the nurses station who approached me and happened to be the factory supervisor. I explained the various situations including my circus act rolling nurse. Her jaw dropped and she grabbed my hand and smiled. She promised she would add my new observations to her email which would be sent to higher factory management. I did remind her of the one smiling nurse. I was left to more waiting until I finally interrupted my rolling nurse before I saw her ordering her own lunch which was obviously a big priority. She told me I need to wait for the doctor in a tone which she was saying, “shut up and sit down at your wall facing chair.” At this point, Jim had finished his call and was now standing beside me since there weren’t any chairs to sit. He questioned what was taking so long and the clinical trial person asked, “still feeling the same? Any problems? Okay see you next week.” I was not sure if she wanted the truth, so I answered with a “yes” and “no”. The factory visit was concluded and hoped secretly that my comments could change this factory into a more patient focused factory. I know it would make a difference. I laughed as I read the sign in the factory about commitment.