The Cancer Chronicles 43

A Sick Child Walks Out and I Clearly See...
I  Can Be Part of the Solution!

SUNDAY - December 11, 2011

Off we go with some trepidation. 3:00 AM came early. Lately it is very important to be on time for your flights as they are often filled to capacity, if not overbooked. If you miss your flight, it could be days before something opens up to accommodate your mistake.

The flights were uneventful and we rolled into Houston on time. Smart people abound! A man standing at transportation asks, "Can I help you?" "Yes," I reply, "I need a cab." "You mean a TAXI?" he corrects. "I don't care what you call it, just get me a driver before I get in and drive the thing myself!" Geesh! I'm from another planet!!!! Pop or soda...it's all the same! I think I’m over tired and still pissed off from all the scheduling faux pas at the hospital!

I quickly made it to my hotel room conveniently arranged by the American Cancer Society. Given enough notice, they can often find available medical rates and even deeper discounts. Make sure you tell them you will need a hotel that provides transportation to the hospital if you are not renting a car.

MONDAY - December 12, 2011

I arrived at MD Anderson Cancer Center at 6:50AM, ten minutes before I was told to arrive after my last phone conversation with the schedulers. I counted 65 people before me and they kept coming! It was a mad house. I noticed right off that they were only calling one person in at a time for bloodwork. They usually called people in groups of five or more. This morning was different. For the first half hour I sat and waited as one at a time were called. Soon they began calling groups as I remembered in the past.

Many people were grumbling and some seemed to take the position this was business as usual. Next to me sat a man with his younger brother. The young boy sat motionless and speechless as his older brother, obviously his loving caregiver, became increasingly agitated. The older man began to grumble, “I have a very sick little boy here…is it always like this?” he asked me. I just shook my head.

He told me his little brother has had cancer for four years (the same time as me) and that they were told he needed to come here for his treatment. I got the impression they were new to MD Anderson, but not cancer and that wherever the young boy had been treated before, they did not encounter these issues. He kept repeating, "I was told this is the best hospital in the country." I have uttered those words and heard the same from many others. But, I will say it has not been without incident.

“Why can’t they keep a schedule? This is ridiculous! I booked his appointment months ago and we were early for his appointment. It’s 45 minutes past our scheduled appointment time! I have a sick little boy here!” The man became a bit more vocal. I could totally relate to his problem and nothing in this world is worse than seeing a young child suffering from cancer.

The older brother feverishly buried himself into his cell phone appearing to text. Then briskly walked up to the desk, said a few choice words, came back to the little boy and said, “Come on, we're leaving!” Then he stormed out of the waiting room ranting and screaming, “I have a sick little boy here! This is supposed to be the best hospital in the country! I'm not seeing it! I was on time for my appointment and have waited 45 minutes."

As they left, the sick young boy silently followed behind head bowed, shrouded by the hood of his jacket, not making eye contact with anyone.  My heart broke in that moment. I TOTALLY UNDERSTOOD HIS FRUSTRATION, but this kid's life could be on the line here! Where are they going?

For me the day went very well. I only had a 30 minute wait for my bloodwork. I went in way before more than half of those before me. I breezed onto CT scans in the Mays Building across the street, again a short 20 minute wait, and finished in less than 4 hours with everything! That's not typical from my past experiences. I think they might have expedited me because of all the scheduling mistakes or they are so screwed up I fell on the lucky side of the equation this time.

The best part of this morning...a BIG Southern Breakfast of Biscuits and Sausage Gravy! The hospital food is really pretty good! YUM! But remember that comes from a guy that lost most of his taste buds to cancer! TODAY I CAN'T COMPLAIN!

MONDAY AFTERNOON

The rest of the day I could not get that young boy out of my head. I kept thinking, were did they go? Did they come back or just walk out of the hospital for good? If they did leave in search of another hospital, a search takes time. Who’s to say how much time that little boy has left? A few weeks of searching for a new hospital could mean life or death. I don’t know how ill he was, but he certainly didn’t look well and was obviously very sick. The whole thing just made me angry!

It reminded me of when I was at my sickest point and when things went wrong at the hospital. I would often let things slide. I was too sick to worry about the delays or mistakes and the one thing that was on the top of my mind at that time was…Am I going to die!? So, you become more passive. You just don’t have the energy to deal with the trouble and it appears everyone else there is dealing with the same issues, so you relent.

I began to think…I’m stronger now. I don’t want to put up with crap like this anymore. I should find an alternative hospital to treat me in the future while I’m strong enough to make these decisions. That young boy walking out resonated strongly within. I realized I have other options. Yes, MD Anderson is said to be the number one cancer hospital in the country, but with everything I’ve seen happen with me going back to day one…I wonder why. Read my blog from the beginning and you well see where I am coming from.

I have already done a lot of research on other cancer facilities, but I keep coming back to ground zero...MD Anderson saved my life…WHY would I want to go anywhere else? Today I had my answer. I relate a lot of my life to the restaurant industry, so I thought…If I was the best chef in the world, creating the most mouthwatering experiences you could imagine and I had a lousy wait staff…I wouldn’t have a very busy restaurant for long.

There’s the answer! I have the best doctors in the country, but the support staff is making it so difficult that even a sick patient does not want to return, which totally puts into perspective the young boy walking out! SOMETHING HAS TO BE DONE!

Why would a man (me) contemplate walking out on a hospital that saved his life after four years in search of another hospital??? Because he has had enough! It's not just the scheduling for me, it's billing, one employee telling you one thing and another something totally different, the added expense to come all this way, AND lack of communication...I'm just tired and want another option. Just like the restaurant business...there is always another one around the corner.

BUT WAIT...will they have doctors that will save my life the next time I need it? Do I want to take the chance? I might lose my battle if there is a next time because my new doctors failed me. My life is on the line here, not just a simple dinner! How do you create change? How do you fix a problem that's obviously bigger than you are??? How would I handle this if it was my business?

MONDAY EVENING

Tonight I had dinner with a wonderful woman that was part of my life saving team. Julie is MD Anderson's Senior Clinical Dietitian for the Head and Neck Center. She was the one who taught me how to use my feeding tube and supplements I needed to sustain my life for the almost 3 years. I learned about juicing and proper nutrition while being orally challenged. Get your minds out of the gutter! She was one of many that supported me in my darkest hours and through this and we became good friends.

That evening we did one of my most favorite things in the whole world to do. We had dinner together! We dined at my all time favorite Pappadeaux's, talking and enjoying each other's company as if I never had cancer. NOTHING in this world could be better for a person that has lost their tongue to cancer, than to enjoy a meal and converse with friends, especially when this is one friend that played a significant role in saving my life! YES I'M HAVING RED MEAT...even though my recent tests show high risk for heart failure!!! Sh*t BRING IT ON! Piece of CAKE in comparison...and I'll eat that too!!!

The subject did come up of my frustration with the hospital. I've discussed this issue with Julie long before this meal, so she was already aware of my frustrations. I tried not to focus on the problems as I didn't think it was fair for the topic to dominate our conversation. This was to be a HAPPY social occasion. After all, I know none of this is Julie's fault. It's not my doctor's nor my nurses fault either. Though we did discuss the topic, I hope it didn't become oppressive during dinner. I tried to reel that in.

The meal was long, mostly because I still take forever to eat and when I add conversation to the mix, well...it becomes an event. I can't chew fast and I need to cut everything into small bites. On top of that I ordered a big meal of Fillet and Lobster!

I would normally order soup and salad, something I can eat simply when out with friends, but tonight was a grand occasion. It was the first meal we shared since we met and she was the one who helped me survive on a feeding tube. To me it was a celebration, a night to show my accomplishments, and how grateful I was to have her as part of my team! Pure Joy...or pure Julie to be correct!

That night as I went to sleep it was obvious, I didn't want to leave the hospital if I could bring about some type of change, but again...how? I thought the only way something like this can be fixed is to go right to the top. I decided I would try to contact the President of the MD Anderson Cancer Center, Ronald DePinho, M.D. Surely he would want to hear that a cancer patient whose life was saved by the hospital is ready to walk out in search of another.

When I returned to my hotel room, stuffed and beaming ear to ear from the evenings wonderful meal, I was still worried about the lump on the back of my neck. I would find out more in the morning if my cancer has returned. I also had my appointment with one of my favorite doctors, Dr. Stella Kim. I just love her! I have two Dr. Kim's and tomorrow I have an appointment with both Dr. Edward Kim (chemo) who follows my progress like primary care and Dr. Stella Kim (ophthalmology.) My home eye doctor already checked my eyes prior to me coming to MDA and I carry with me the good news...proof my left eye is ready for surgery.

GOOD NEWS???? YES! I failed my eye exam!!! This is one exam I don't mind failing!!! I have been dealing with cataracts compliments of cancer from radiation to my head and neck since 2007. My right eye had a lens implant in 2007, but my left did not qualify (by insurance standards) until now. It's all been a blur for many years, which does have its benefits at times! Radiation might be a life saving measure, but it sure screws up everything else! All I want for Christmas is my eye sight back, my eye sight back, my eye sight back!

TUESDAY - December 13, 2011

Back to the hospital by 8 AM to prepare to evaluate my eyes. It's official, I can't see! I'm scheduled for surgery. Dr. S. Kim said, "I surprised you can see as well as you do." I gotta through in one, I told you so!

I am so exhausted I can't see straight! That's because I can only see out of one eye! HA! Scans came back negative, just fatty tissue on back of neck, nothing to worry about. I get my sight back in January. It's turning out to be a very good day, but, the young boy was still on my mind.

I expressed my anger with the hospital to my doctors and nurses. They all seemed to understand there are issues surrounding the hospital right now and even offered support saying, "If there is anything I can do to support your cause." Humm I guess at this point it is a cause.

Before I could say Head and Neck I was asked if I wanted to meet with May Johnson, MD Anderson's Clinical Business Manager of the Head and Neck section of the hospital. They were also going to bring in someone from Patient Advocacy, but if you all recall when I had an issue with the dental department years ago...and Patient Advocacy made promises that were never kept. This needs to go bigger and since the opportunity was presented to speak with the person who oversees all of the schedulers, I was down!

Since this was an impromptu meeting, I was asked to wait for May to arrive. As usual patients chat while waiting to be seen. A woman asked me about my cancer and I showed her my scars and discussed my history and my rather remarkable recovery. The nurse returned to discuss the meeting with me and actually seemed a bit excited. She left for a moment to see if there was a room available for a private discussion. The female patient gestured to me with a warm smile and a thumbs up. She obviously overheard some of our conversation and said to me, "Cancer stole your tongue and the doctors here gave it back so you can now speak for those who can't." OMG! How profound her words were and how true. I was now a man on a mission.

I was escorted into a private room and asked to wait for May to arrive. She was very understanding. Quiet and obviously the listening type...one who was willing. I knew how important this meeting was and the whole time I kept thinking, "How can I get her to understand this from a patent's perspective?" I told her of the waiting room incident where the young boy walked out and how much of an impact it made on me.

May teared up as I spoke. She was feeling what I felt as it happened. She understood. We discussed the finer points of good customer service. I tried to use analogies that she might relate to basing them on my experiences from my restaurants. After all customer service is similar whether it's fast food or a hospital, right?

I suggested hospital employees shadow patients for a day. Stick with them on those long 12 hour days. Follow morning until night, through some of those miserable schedules, like the ones I had during my treatment. Hopefully they would experience the screw ups and understand. If time didn't permit, then make them go into the waiting rooms without acknowledging they are hospital staff and talk and LISTEN to the other patients, get to know their stories and the hospital headaches they face.

It's hard to go through this when you're in good health...imagine being so sick and preparing for a possible funeral. Maybe then they will understand how important their job is. How every last minute change or screw up makes it even harder. Maybe they will meet a young boy that just can't take the mistakes any longer. Maybe they will learn from the heart and not the computer.

If at the very least assign a person, or better, a department that takes the time to call patients (customers) everyday to get a real understanding of how well things are going. To poll the audience and see how they are really doing. This was something I did religiously with my businesses. I had tickets that showed wait times, with orders and phone numbers. All I had to do was call to find out how my staff was doing. At times I got an earful, but I quickly learned that most customers don't bother to complain, they just don't come back and those that do you MUST listen to because they are actually trying to make you better because they like your establishment.

Sure you have to weed out those you can never make happy. But, a loyal customer with a complaint is the best way to make your business grow stronger if you listen to what would make them happy. When I came across an angry customer I thought I might lose, I would often be willing to send them out a coupon for a free pizza. BUT...I quickly learned I didn't have to compensate them that much. Many times they were so shocked that I cared enough to listen that didn't even want a free pizza. They just wanted to know someone cared enough to fix the problem and they could get what they paid for and were assured the product would be consistent. From there you have to deliver your promises if you are to succeed.

I asked why a trained scheduler would be able to schedule a blood draw AFTER a CT scan if it MUST be completed before. A new patient would have gone to the CT scan (in another building by the way) only to be turned away and have to go back to the main building for a blood draw. I was subjected to this once myself. Do you know how much time is wasted and how exhausted mistakes like this are for a sick cancer patient? Why does the computer even allow this to be done without some override protocol?

I began to realize as we spoke, this is SO MUCH bigger than just the scheduling. There are software issues with the programming. There are training issues with the Scheduling Department and if 65 plus people are in a waiting room at 6:50 AM and they are calling ONE patient at a time...it's obvious the people who are scheduling the patients have no communication with regard to the guidelines of whoever schedules the employees in the Phlebotomy (blood) Department. It's a domino effect...and not that's not a pizza reference!

After more than an hour, May invited me back in the future to address her staff on the impact her staff has on our care. Two doctors and a nurse support my efforts.They are honestly and sadly aware of their faults at this time, but want to get better. See...I'm not just another bitchy patient! (no comments!) My father always told me, "Don't be a part of the problem, be a part of the solution." I'm willing to help May anyway I can.

I don't want to go elsewhere, but if things don't change for the better, I need to find another team of doctors before I get too sick to make those decisions if needed in the future. AGAIN, I realize this is not the doctor's nor nurses faults. The support staff needs some serious work or the hospital will be unable to accomplish its goals. Those goals...SAVING LIVES! I will always remember that young boy that walked out of the hospital with his head hung low and wonder what ever happened to him?

I pray the New Year is better for all...HAPPY NEW YEAR EVERYONE!

My New Year's Resolution: To be part of the solution!

Peace B