The Pulse

When faced with the challenge of a serious illness, one often feels out of control and at the mercy of the medical community, i.e., being told, in a nice way, this is what we are going to do to your body for the next six months. But so far I have come to appreciate all the choices I have – spiritually, emotionally, and physically – and now that I have had time to process the diagnosis and grieve, I can now move into a focused plan to heal and be as proactive as I can. But I can’t help worrying about women who frankly aren’t as resourceful as I am. Where is the healthcare industry when it comes to helping them make choices?

I made one of my first choices the day I knew I would be saying goodbye to my hair. I called the salon I had been going to for years to ask my stylist if she would be available for a head shaving ceremony. Her response was, “Let me know when you have a date so I can see if I’m available; and if I’m not, there are other girls at the salon who could do it.” I was taken aback by the response and decided it was time to find a new salon. Choice #1.

In a month I have a keynote to give to 300 people and I decided I wanted to stand up there as me not a cancer patient! Plus, I really don’t want those pity looks we all give the people we see without hair. I know the power of perception, so if people perceive me as healthy and strong, I will see myself that way too. Choice #2.

As an aside, I know everyone has told me the hair will grow back, but in the meantime, I don’t see them lining up with me to get their heads shaved. When I was young I had a Crissy doll that had short hair, but when you pushed her belly and pulled her ponytail she got instant long hair. I want that!

When I originally asked my surgeon if I would lose my hair, she told me I would. She then added, “You realize that your hair will come back in its original color.” I paused and thought – is she acknowledging that I am not a natural blonde or does she think I am just dense enough to believe my hair will come back highlighted! One small bonus is that while getting fitted for the wig I was told I have a petite head. Wow, I’ve never been told anything on me was petite.

This past Monday was my day of being proactive and making my own choices.

A local salon owner in town offers free services every Monday to anyone with cancer for as long as they are in treatment. I had an appointment at 10 am to cut off my hair. I told myself that I chose to do this to prepare for the next step – no hair. When I walked in I told her I was here to cut my hair off and she gave me a hug and said we will take good care of you.

While I was thanking Carolyn for her generosity, she asked me if it would be okay to schedule me for a massage and facial over the next few weeks. She then began to tell me about her three family members who all had cancer and then began to cry when she pointed to the photo of her sister who had died. She went on to tell me the challenge she was having finding corporate sponsors to underwrite the expense of her charitable cause. She said, “I don’t know why I am telling you all of this?” I explained that I spent ten years fundraising and would think about some ideas for her. She then said, “It’s a God thing that you are here today.”

A friend recommended that I make an appointment with Integrative Health, a group of three nurses who approach illness with supplements and vitamin IV therapies. Monday I went in to get a blood test and schedule an appointment for a review of all my minerals, metals and estrogen counts so they can customize my supplements to keep my immune system up after all this chemo. Choice #3.

I am using my free time to pray, meditate and prepare for the marathon in February where I get my port put in, two chemo treatments, head shaved, and a bonus – the chemo will throw me into menopause. Perhaps next will be locusts in my backyard. I’ll keep you posted. How I mentally prepare and handle everything is up to me. Choice #4.

I am pretty sure I am not alone in this, but in my life I have done everything I can to avoid vomiting.  I hate it when your body takes control and you are at the mercy of a response to an illness or toxic substance.  So I was relieved when my oncologist told me that it was his goal to do everything in his control to keep me from throwing up during treatment.  He even went on to say that some doctors think he goes overboard prescribing medicine to take three days after treatment to keep from getting ill.  I say, “Go for it doc!  Don’t listen to those guys.”  In all seriousness, as a patient I hang on every word that somehow lets me know my care is not going to be ‘cookie cutter’ because I am not like everyone else.

I soon realized that my thoughts were as important as the medicine I would get to rid me of the cancer cells.  I have tried to live a healthy lifestyle that included practical habits in place of prescription drugs.  When I first learned I was going on this journey (as opposed to the cruise I normally would be planning), I went online to research what the Cancer Center of America had to offer and the location of the nearest one.  The nearest location was almost a two-hour drive and not really practical given how many visits I would need over the next seven months.  However, I researched everything they offered to treat the “whole” patient and then found resources in my hometown of Indianapolis to meet that need.

I believe treatment must involve mind, body, and soul, and not blind acceptance that it is just about my body.  I already had a strong sense of what stress was doing to my body such as never ending tears, flight or fight breathing, and endless fearful thoughts going through my head.  I also knew that my physical response to the fear was not going to help me heal.  In my research, I have read that massage therapy, meditation, prayer, diet, supplements and even a few things I had never experienced – Reiki and acupuncture – can help during cancer treatment.  So I have looked into all of those things.

As a professional speaker, I am blessed to know some wonderful people, so I called my friend, Dr. Craig Overmyer, a life coach and expert in meditation.  He spent three 90-minute sessions with me teaching me to meditate and breathe.  The medical community, on the other hand, might replace this natural path of relaxing and releasing harmful thoughts with a script for Ativan.

Armed and ready with all the tools I could gather before my first chemo, I was mentally prepared to face it without fear.  I packed my bag with all the suggested items such as a pillow, blanket, bland food items (BRAT diet), iPod, books, notebook and pen, and even hand lotion and lip balm.  My husband and 25-year old son went with me on my first visit knowing it would take three-hours.  I had many people praying for me that I would be protected from all the harmful drugs that were going to be put into my body.

I entered the oncologist office, signed in, and waited for the woman to call me to the window.  She said, “Hi.  Take this yellow slip through those doors and they will help you.”  I followed her instructions and headed into the “chemo zone” for the first time.  As I moved through the area, I saw people in separate cubicles getting their treatments – one was sleeping, some were watching television, and some were just staring blankly into space.  I approached the nurses at the desk with my yellow slip and was greeted with, “Have you been here before?”  “No,” I replied, “This was my first chemo.”  “Well when you come in you put your yellow slip in the slot here and if there are additional slips just put yours behind the others.”  Then she asked, “Did you get your blood drawn?”  “No,” I said, “I was told to come back here.”  “You need to go back out to the lab around the corner and get a blood test first.”

I wasn’t quite feeling the love at this point especially since this was my first time.  I knew I was going to be with these people for the several months and was feeling some tension over the possible treatment I was going to receive.  Let’s think about that for a second – it’s my first experience of any kind with cancer.  Wouldn’t you think they could come up with a more inspired welcome?  After all, we’re supposed to be partners on this journey.  How about something like “Hi Brooke, we’ve been expecting you.  Let me take you around and introduce you to the team.  We are going to do whatever we can to make your time here as comfortable as possible.  Is there anything we can get for you?”

I entered the small lab area where Vivian greeted me, told me to have a seat, and said she would be taking care of me.   I immediately saw that she had scripture on her refrigerator and a bible next to her computer.  I asked her if she was a Christian and she replied, “Yes, I am and I am a two time cancer survivor.”  I took a deep breath and said a quiet thank you to God for her kindness and ability to put me at ease.  I didn’t even notice the blood test as she continued to talk to me and tell me that everything was going to be okay and that God had a plan for me.  Can one person make a difference on the patient experience?  The answer is unquestionably yes; by their actions and words and not a set of scripted behaviors.

I entered the chemo area again and was told to pick a seat and they would be with me shortly.  I don’t have a port in yet so finding a good vein usually consists of a series of needle pokes before getting the right vein.  The nurse came over with a heating pad to get my vein prepped for IV therapy and after 15 minutes came back to find a vein.  She failed, as the vein on the top of my hand would not cooperate.  She asked a young nurse to come over to find a vein and while I was explaining that my other hand might work better, she had already found a vein without causing pain.  As a patient you are so grateful for this skill that you are instantly bonded to them.

The first chemo is a series of instructions on what they are putting into you and what the possible side effects could be.  The nurse, a 44 year veteran, who earlier had barked at me was now my teacher for the next few hours.  She sat next to me and explained all the details of the drugs.  She asked me if I had been briefed on the information the oncologist had given me last week.  I explained that I read them once, but decided to focus on the way they were eliminating the cancer cells and not the side effects.

We sat and talked during our time together and even laughed.  I decided that I wanted to be as normal as I could be through all of this and one of my skills is the ability to relate to others.  When we were finishing with the final drug after the anti-nausea drugs, I turned to my nurse and said, “Thank you for being so nice to me.”  She replied, “You are easy to be nice to.”

As patients we start out vulnerable and not in control.  We can only react to the way others treat us.  Only when a clinical person is kind and engaging are we free to change our thoughts of fear and vulnerability to ones of reassurance that we are in good hands.   This begins to reinforce a new set of beliefs that say, “I can do this – everything will be okay.”

For the record, I didn’t throw up, and thanks to some great drugs ordered by my oncologist, I barely felt nauseous.   Also, if you read my first blog, you know that I was forewarned that my oncologist was in the habit of calling patients at all times. He called last weekend.  “Keep it up, doc!”

On December 9^th I blogged about the extraordinary mammography experience I had.  The irony is that one month later I am moving headlong into a fight against breast cancer.  It has been both a blessing (detecting the cancer) and a curse (having it alter my life).  It would be easy and perhaps even understandable for me to curl up in a ball and hide for the next six months while I go through chemo, surgery and radiation, but that’s not me.  At least at this point I don’t think it is.  God has fortunately given me the ability to communicate, care passionately about how others are being treated, and help our clients see themselves through the patient’s eyes.  So this time I’m the patient.  I hope the experiences and observations I share in this blog will provide healthcare professionals with my unique inside perspective.  Brooke Billingsley

There have been a lot of blogs and journals written by patients describing their bouts with cancer.  This one is a little unique in that I hope to share my experience in a way that helps my healthcare colleagues think about what they do in the name of the patient experience.  Even though we have for years observed healthcare through healthcare mystery shopping and employee perception deep dives, this is first hand, replete with the anxiety, fear, and confusion associated with being a cancer patient.

One of the immediate observations I have had is that no matter how many people you run into who have had cancer or been affected by cancer, it is a personal journey with an uncertain end.  Don’t get me wrong, I want prayers, love and understanding, but my cancer isn’t your cancer.  It can’t be.  I guess that is my message to healthcare people as well.  I may not be quite as unique as I think I am, but my healing has to be individualized.  If the healthcare system cannot make that happen, I have to do it myself, which means lots of research, meditation, and talks with God.  Oh, and I see a real good wig in my future.

Nothing seems to make sense about my cancer.  For example, I have none of the risk factors so popular in medical literature.  I am conscientious about what I eat, go to the gym three times a week, and am very aware of my own body.  I delayed my annual mammogram by a mere two weeks.  More irony – my mammogram was delayed because I was in Brazil speaking to a women conference about hope.  I even had the occasion to pray for a woman who was near hysteria over her pending breast cancer surgery.  When they heard of my diagnosis three weeks later, many of the attendees at the conference asked if I knew I had cancer when I was there.  Am I that strong?  Time will tell.

When this all started, I wanted to hear that because of all the right things I had done, I was at least going to get some credits.  Or how about points toward future procedures?  Because I eat right, two less chemo sessions.  Or because I work out, no radiation.

My oncologist is from India so he seems to get the ‘you are what you eat’ thing.  One of his favorite phrases is “You’re a smart person, you understand.”  I admit I kind of like hearing that approach.  Playing to my ego.  He even called me a “Super woman” when I described what my life was like.  Again, a good play.

However, almost a month into this and I hadn’t heard one expression of what I would call ‘good news’ such as it’s a calcium deposit and not something concerning.  The biopsy shows no cancer cells.  It’s only Stage 1.  There’s no need for chemo.   Finally the oncologist explained that the presence of positive estrogen and progesterone means that cancer cell growth was likely slower.  You’d have thought we just scratched off a $20,000 lottery ticket.  Kevin and I were so thrilled with this kernel of good news we were high-fiving.

And yet, when the oncologist laid out his game plan, it didn’t feel personalized.  It felt regimented.  What did I expect?  I want recognition that I am unique.  I am angry that this is happening to me, not to mention millions of women.   Okay, to be brutally honest, I am having such a hard time with the idea that I am going to have toxic chemicals put into this body.  I want someone to say they understand that and not just assume it is a given that that ‘is what we do.’

Let me talk briefly about communication.  I have found the healthcare team so far to be very loving and empathetic.  My oncologist requested my cell phone number so that he can check in on me at his convenience.  His assistant told me not to be alarmed if he calls me on the weekend because it means he is thinking about me.  I find that comforting.

I am also very impressed by my surgeon who spent an amazing amount of time with me and I could tell she was making every effort to connect with me.  She didn’t even flinch when I talked about my new vegan diet.  She even called me at 7 p.m. the day of my breast MRI to tell me that the diagnosis was confirmed as Stage 2 and contained.

So I found it interesting when this extraordinary communicator warned me that I might find her assistant a little unrefined (my word, not hers), but that she was really very good at what she did.  Afterwards, Kevin and I discussed her preemptive remark.  Kevin thought it was a good move on the surgeon’s part to mitigate future perceptions of the assistant.  I countered with the argument that she was attempting to lower my expectations and convey the message that the employee’s efficiency trumps patient satisfaction, a theme explored masterfully by Fred Lee in If Disney Ran Your Hospital.

I previously mentioned the breast MRI I had to endure.   I say this with all sincerity and in the name of patient satisfaction; all manufacturers and MRI technologists must be required to spend time in the machine for the same amount of time prescribed to patients.  Face down for 45 minutes straight with their arms above their heads.  Are you kidding me?  I won’t do it again.

First chemo tomorrow.  Yahoo!

In a recent Hospital Impact blog, Thomas Dahlborg questions what is meant by ‘patient centered’ in the context of “Patient Centered Care.”  After listing a number of non-relationship influenced quotes from healthcare providers such as “Relationship in healing?  Relationship doesn’t improve access, outcomes and lower costs,” he rightfully wonders how these same people can be associated with an organizational or industry push for patient-centered care.  I realized this was not an entirely new discussion when I ran across the airing of the movie Patch Adams the other day.

Early in this film from 1998, Patch tries to convince his young colleagues that actually relating to patients is an acceptable practice despite what they had been taught.  Or perhaps you prefer to go as far back as The Doctor to hear the same message.  Both movies represent wishful ‘gosh, wouldn’t it be great’ Hollywood thinking that resonates with audiences.  However, calling it patient-centered doesn’t change the reality.  Unless patients feel the difference, it’s just the new ‘catch phrase of the day.’

The more global question for those of us who truly want to alter that reality is how do we intelligently convince the naysayers Dahlborg speaks of that there is a better way.  We have seen from our healthcare mystery shopping research that saying you’re patient-centered without delivering fools no one, least of all patients.  Our advice is to look inward.  Do the work, win the argument, and prove them wrong.

We hire lots of healthcare mystery shoppers and read about their experiences every day on behalf of our clients, but sometimes our own experiences remind us of what we all want out of healthcare. Brooke Billingsley

My last experience at the imaging center I had been going to for ten years was terrible. When I was called to the desk to provide additional information, the receptionist asked me for my photo ID, handed it back to me, and then began to quiz me on what was on the ID she had just made a copy of. Her demeanor during our exchange was complete dismissal of me as a person. I admit to being highly intolerant of being treated that way and vowed to change providers next time.

I just completed my 11th mammogram and it turned out to be one of the top three healthcare experiences in my life. I arrived at my appointment ten minutes early and upon entry I was a bit confused as to which direction Suite 140 would be. A friendly elderly man approached me and asked if he could help. I told him I was looking for the Breast Center for a mammogram and he said, “Follow me and I will show you.” He walked me to the door and held the door open as I walked in.

Once in the door, I followed the instructions and signed in and waited. A receptionist appeared in less than two minutes and asked me to step up to the window. She greeted me in a warm welcoming way and asked for my ID and insurance card. She asked me to sign a few documents and asked if anything had changed regarding my residence. I appreciated her asking me if anything had changed compared to the other Breast Center I had gone to for ten years where they made me fill out three pages of redundant information that made me feel like I was a first time patient.

I was instructed to have a seat and someone would come out to get me. I waited less than three minutes before this friendly face with a visible nametag that read ‘Mildred’ escorted me to the changing room and told me that there were lockers for me to use. Mildred told me that once I had changed, she would come back to get me. I waited less than a minute before a smiling face appeared and escorted me to the imaging area where she would perform the mammogram.

We entered the room where I saw the newest technology, a small, impressive- looking machine that would take an efficient, high-resolution mammogram. This is the part of the experience where, if you are not a woman, you may not understand, but the relationship with a complete stranger becomes very intimate at this point in the test. Not only do you feel vulnerable standing there half topless but you also have someone you met only minutes ago holding your breast and placing it in positions that will soon become uncomfortable.

But Mildred was kind in her approach and asked me if I was okay. She participated in conversation to overcome my nervousness and she took my verbal queues as an opportunity to show me how the digital pictures looked after each side was completed. I felt respected for my level of intelligence and, more than that, I felt cared for.

The reward for Mildred’s approach to her ‘work’ is that I will go back to this Breast Center every year with a sense of confidence rather than apprehension. And I will blog, tweet and tell everyone I know to go there too because of how she made me feel!