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

MERRY CHRISTMAS TO ALL, AND TO ALL A GOODNIGHT!

My First Christmas Card
Mommy & Me

On a cold snowy winter's night in Detroit, Michigan, a child was born. My mother was dressed as Santa because of her big baby belly. She ho-ho-ho'd one too many times delivering gifts and her water broke. Mommy then delivered her most precious Christmas gift ever, Me!

I wrote this for my mom as a gentle reminder of that exhausting Christmas day:

Hello Christmas!
by Brian N. Walin

It’s all warm and cozy, my cheeks nice and rosy. I cuddle and coo, like most babies do. I want to stay in here, with my mother so near. It’s just a small bedroom, though could use more headroom.

I hear noise surrounded, I’m kind of astounded. The music I hear is about a reindeer. I hear my Dad bellow, and Mom shakes like Jell-O. They’re having so much fun, it’s my time to be Son.

I squirm and I kick and I even pick. And all I can hear are words of St. Nick. On Dasher, on Prancer, I’m sure you all know. But my Mom is showing, it’s my time to go. The party must stop now, it’s my time to drop now. I haven’t a care, I soon will be there.

So off we go rushing it’s my party now. I can only imagine, Mom feels like a cow. She turns and she twists, she’s barring down hard. I can only hope now, I won’t pop in the yard. We get to the Doctor he’s waiting inside, I’m kind of excited about this whole ride.

It’s my time to jump out, but I still have some doubt. I think I will stay in here, if just for one more year. It’s really not that bad, but I can hear my Dad. “Let’s go you small squirt. I want to see my lad!”

So out I go bouncing it’s so good to see, that I have become part of this family. It’s so great to see you, you’re all here for me. Then out of my eyes I spy a small tree. All of the sudden, a nip and a tuck, this just can’t be happening, it must be bad luck. A slap on the ass follows this all, and then I feel pain and I start to ball.

Why did you do that? I’ve done nothing wrong. I’ve really been so good, all evening long. There’s no need to hit me, I’m sure you will see. I’ll try to be real good, for this family. Don’t hit me now, I just want to stay. I promise I’ll brighten all of your day. Just give me a chance and teach me real well. I promise I’ll try not to put you through hell.

This day has been trying and awfully hard, but I thank God now, I’m not in the yard. I really can’t tell what had gone wrong, but I’ll always remember the deer from that song. It seems to be clear about those reindeer. That’s how it all started with me being here.

A swoop and coddle with cloths that do swaddle. I’m warm and I’m cozy my cheeks again rosy. I just need some sleep, I won’t make a peep, just let me drift off and start counting my sheep. This room is much bigger, it just seems so right. But I need my sleep now, I bid you good night.

December 25, 1960

©2005 Brian N. Walin (All rights reserved)

The Christmas Tree

Wish We Could Be Together At Christmas

I grew up in Michigan. My aunt had a very realistic imitation Christmas tree manufactured by Mountain King, which I loved. I searched high and wide to find this tree, to place in the lobby of my new restaurant. When I was unable to locate one, I mentioned to my father during one of our nightly phone calls, “When I return home for the holidays this year, I’m buying a Mountain King to bring back to California.”

I searched for that Mountain King tree in California with no avail. It seemed the majority of Californians purchased real trees. I never agreed with the idea of cutting down a tree just for a few weeks of self gratification. I admit, they are beautiful and fill a home with a heavenly aroma, but I can’t kill a tree for that reason. Just the thought of the shear national number of trees cut only for this reason, makes me ill.

I was only in business for 6 months as the holidays approached. I wanted so badly to return home, to Detroit, to see my father for Christmas. I was born on this day and this has always been my favorite time of the year.

It wasn’t going to be easy, but I thought I could slip away between December 24 and 26. I was expecting business to be slow those days, but knew New Years was going to rock, so I had to return before. The crew was still green and I was still learning how to run a business. I don’t know what I was thinking, but I was going home! I missed my dad.

Nightly, I spoke with my father on the phone to discuss the day’s events. I’d bitch or brag and he’d listen and offer advice when he could. My father was a good man with the best work ethic of anyone I’ve ever known.

Al Starkey and his wife Marge, were new Little Caesar franchisees and had come to my restaurant to learn, while they waited for their first location to open in Monterey, California. Al and Marge were much older. Well... all the other franchisees were much older. Al wanted more experience running a Carry-Out unit and I needed the help, so it was a win, win.

I remember that day so clearly. It was a busy dinner rush and I was working the register. In the beginning, I had a hard time letting anyone touch the money! We had 4 phone lines that were constantly on fire during the dinner hour. As I opened the cash drawer to make change, I heard an employee say, “Brian, it’s for you.”

“Is it an emergency?” a question I would ask anytime a personal phone call came in during a busy hour. I always heard a no, but this time the employee said, “Yes, it is!”

I was handed the phone. It was my Aunt Carol. This is a woman who NEVER calls. All she said was, “Brian, are you sitting down?”

Instantly I knew there was something wrong with my father, but before I had a chance to calculate it, she tearfully said, “Your father is dead.”

All I remember is sinking to the floor behind the front counter with the cash drawer left wide open and unattended as Al swooped down like an enormous eagle and scooped me up in his arms as I screamed, “NO!” with tears streaming down my face.

I wasn’t supposed to fly back for a few days and I wasn’t near prepared to leave at this moment. How will the restaurant run while I’m gone? I will need to be away now for more than a few days and I only have one assistant manager in my employ. I had no manager since that was my role. Who will make the deposits, get bank change, place the food order, pay the bills? Who’s going to sign the payroll checks? I will be thousands of miles away and for how long? What am I going to do?

It was all a blur, but in less than 12 hours I was on my way to the airport and a Corporate Little Caesar Supervisor was being flown up from Los Angeles to run my restaurant until I returned. There wasn’t anybody else closer to help. My restaurant was the first in the Bay Area.

When I arrived at the San Francisco airport, there were people everywhere, sleeping on luggage. The airport looked like a homeless shelter. Dozens of flights were canceled due to inclement weather. I waited in such a long line staring blankly at everyone and everything, not knowing how I even got to the airport.

Al had called our corporate headquarters and made arrangements for the supervisor and then managed to get me packed and rushed to the airport. I was on autopilot without a clue what was happening.

As I approached the United Airlines ticket counter, I handed the lady my ticket. It was for the 24th of December and today was the 22nd. I vaguely recall the conversation, but it didn’t go well. She assumed I was just trying to get on an early flight, because of the holidays. All flights out of SFO to Detroit were booked for days because of the weather.

I explained my father had died and I had to return home today. She accused me of lying, sighting that I already had a ticket and that she was sure I was just looking to leave earlier. She asked for proof of his death and requested a copy of his death certificate. “I don’t have one! He just died!” I snapped. “I need to see some type of proof,” she responded with authority.

I became angry, belligerent in fact. “My father is dead dammit! I’m not lying to you! What the hell is wrong with you?” I was so loud and she was so offended and scared from my anger she called security.

I was escorted, screaming, into a private room, calling everybody, "Crazy!” It was I that was falling off the deep end. The security officer calmed me down and asked if there was a way to call the funeral home for more information. Once they confirmed my father was indeed deceased, EVERYBODY’S demeanor changed. My coach ticket was exchanged for a first class seat and I was on the next plane to Detroit.

Seated next to me was a young boy, perhaps five years old, traveling alone with a large bag of toys. The flight attendant was aware of my dilemma and apologized for the seating arrangement, but that was all that was available. It didn’t matter, just keep feeding me drinks (Black Russians) for the next 5 hours and I’ll be fine. I just want to go home!

I drifted off to sleep and the young boy escaped from his seat. That was just fine with me, until a very angry man stood before me, screaming at me, “Keep your brat and his toys out of the isles!"

Apparently the lone child took out all of his toys from the bag his mommy packed and had strewn them all over the coach cabin. As the angry man verbally assaulted me, I stood up to explain he's not my kid and fired back at my assailant, telling him to go f*** himself. I think it took the entire flight crew to restrain the two of us. If this would have happened today, with all the flight regulations they have, we both would have been jailed.

They escorted the man back to his coach seat, picked up all the toys throughout the cabin and instructed the boy not to leave his seat again. I requested yet another drink, as the little tyke said to me, “You don’t like me, do you?”

“Right now? NO, I don’t!” I scowled, and the little boy pouted as tears welled in his eyes. “Look,” I said to him, “Let's make a deal. I’ll make you a tent to play in if you just be good, deal?”

That made him happy and I pulled out his tray table and shrouded it with an over-sized blanket. He disappeared into the darkness of the blanket and quietly played with a toy. It was peace on Earth…well peace at 35,000 feet anyway!

When I arrived, I was pleasantly plumbed from all the free liquor. My Aunt Carol was waiting to pick me up. I insisted on immediately going to the house where I grew up. My aunt didn’t think it was a good idea. “Your father died in that house.” She expressed with concern. My two aunts and a neighbor were the ones that found my father dead in his arm chair.

“I don’t care. I didn’t see it and it doesn’t bother me. I want to go home!” I insisted. When we arrived, I let myself in and closed the door leaving my aunt outside, so I could be alone with my thoughts.

Before me, lit up so beautifully in the living room, was the most precious gift I have ever been given. There stood the most spectacular Mountain King Christmas tree I have ever seen. It was decorated in all blue and green. My father, being the perfectionist that he was, had purchased strings of blue and strings of green lights. But, to make it perfect, he managed to exchange every other bulb, so they were arranged: blue, green, blue, green, blue, green. He knew only I could appreciate such an effort. Can you imagine the time that took?

The Most Beautiful Christmas Tree EVER!

There were blue satin bells and blue satin balls hanging, yards of blue and green tinseled garland, blue tinsel icicles, all topped with a huge blue velvet bow. Wrapped around the base was a tree skirt that was made for my first Christmas birthday by a loving aunt. It was spectacular! Through my tears I spied a card propped at its base. I read the card:

“Wish We Could Be Together At Christmas. You were the best Christmas present I ever had. Love Dad”

As I read, endless tears streamed down my cheeks. I fell to my knees and whimpered uncontrollably, gasping for breath. How did he know we would never see each other again? He knew I had a ticket to come home. I reread the card over and over “Wish We Could Be Together” It still read the same. How did he know?

The Most Beautiful Christmas Card EVER!

I cried myself to sleep that night and quenched the moon with my tears, curled up like a baby beneath the shimmering blue and green until daybreak, the wetness in my eyes still present from my crescendo of tears.

After the funeral there was so much to arrange and many bills to pay. When my father’s credit card bill arrived, the story of the tree gained clarity. My father bought the tree and decorations the very day he died.

My father died after he finished putting up and decorating the wondrous tree. Judging by his time of death, 11:05 PM, December 20, he purchased the tree that afternoon, spent hours putting it up and decorating, and began his nightly ritual; getting ready for bed, showering, putting on his PJ’s, then sitting down to watch the 11 o'clock news in his favorite tangerine colored Naugahyde armchair, seated within his bedroom. He passed away in that chair of a heart attack. I was told it was so massive, he probably never knew what hit him.

Two years passed and I could not bare to reconstruct the tree. It never made it into my restaurant. I kept it for myself. It hurt too much to even take out of the box. Eventually I gave in and thought, “He wanted me to have this tree to enjoy. He died giving me this tree to enjoy. Dammit, start enjoying it!" So, every year you will find dad’s tree lovingly displayed at Christmas, decorated as he left it for me to find, with the tree skirt and his card beneath.

To Dad,

Wish we could be together at Christmas. You were the best father a son could ever have.

Love Brian

The Cancer Chronicles 42

Appointments; Lack of Communication and Respect!

ENOUGH IS ENOUGH!

I booked my appointments with MD Anderson back in early in the year. After finding the lump I emailed my doctor on October 25th to inform him and also ask that I be informed if my schedule changes because of this, to please inform me before I book my tickets around any changes.

On November 3rd I booked my tickets from San Francisco to Houston after double checking my schedule on the MD Anderson patient web site. I only had appointments booked December 12 and 13. So, I booked my flight to arrive on Sunday the 11th and depart Wednesday the 14th. At the same time I called the American Cancer Society to help me find a room at a discounted rate. They are very good with this if you give them enough time and sometimes get rooms for free.

With my flights and hotel booked I was feeling very confident all would go well. It hasn’t always in the past. On November 29 I was looking over my billing invoices on the MD Anderson web site when on a whim I decided to check my schedule again. SOMEONE had changed my schedule without informing me. There was no message left on the MD Anderson web site, no email, no snail mail, and no phone call. If I just didn’t happen upon the schedule change I would have never known about it.

The problem was, someone moved a doctor’s appointment to December 14th, the day of my departure and there was no way to make it unless I changed my flight and called the American Cancer Society to change my hotel arrangements. I checked with the airline and they wanted $150 change fee plus $57 more because the ticket price had gone up. This on top of the already pricey $550 plane ticket, plus $50 in baggage fees. Now, I don’t have a problem if it was absolutely necessary and vital to my health, but it was NEVER even discussed with me and my appointment was scheduled earlier in the year and they had plenty of notice when I called asking if I they needed me longer given the lump on the back of my neck. I really have a problem with some unknown person forcing me to spend my money for no real reason and with no communication.

It's not like I live nearby and can just make a change easily. I have been going there for four years. I have spent a lot of my own money that insurance doesn't cover, on top of the $250,000 that's been dropped in that hospital to cover my all cancer bills. You would think being an out-of-towner and spending that kind of cash would make you a priority customer. Anywhere else in the world it would, but not at MD Anderson. I'm a pee-on that doesn't even deserve a real person communicating on the phone and expecting me to fork out even more money without explaination! I'm sorry...BULLSHIT!

I rifled off a terse email to Dr. E. Kim requesting he forward it to whoever made the changes to my schedule without my knowledge or permission. I sincerely explained I have no grievance against him…after all, gotta love a man that helped save your life. He quickly returned my email explaining, “It happens sometime.” Unfortunately for me it has happened oh too many times in the last 4 years and I’m getting tired of the lack of communication and respect.

Dr. Kim informed me that he was on call 24-7 for the next few weeks and that he would pull himself out of a call to see me and to accommodate my schedule. His appointment with me was changed due to this on call status. He was the only one who communicated this to me. I have to question, why someone would be placed on call when appointments were booked with this doctor six months ago? Again, this is not the doctors fault. The hospital itself is at fault. I very much appreciate Dr. Kim doing this and at this time I felt everything was a go and I no longer needed to worry about my appointments. WRONG!

Days before I’m scheduled to leave I get an automated phone message reminding me of my appointment at 6:00 AM on SUNDAY December 11. WHAT??? When did that change? Someone AGAIN changed my schedule at the last minute, 3 days before I’m scheduled to fly to Houston without any communication other than an automated phone message?? I was pissed! I don’t even arrive until 3:00 PM that day. My flight and hotel are already booked around my original schedule.

On December 8th, I rifle off another email to Dr. E. Kim and a nice long bitchy one to the scheduling department on the MD Anderson web site. I even contact my friend Julie who works at the hospital as the Senior Clinical Dietitian. She was the one who first help with to set everything up and learn how to use my feeding tube. I was so distraught I wanted to inform EVERYONE that enough is enough.

Julie recommended I seek the help of Patient Advocacy, a division of the hospital that helps patients if the run into problems that can't get resolved. If you recall back when I first began with MD Anderson, I used them. I was pretty much given a lollipop to calm me down, pacify me, and an avenue to blow off steam, but nothing was truly accomplished. I know the problems here are much bigger than Advocacy and from experience I don't have much faith in them anyway.

Because of this I have sent an ultimatum. Either accommodate my original schedule, pay for my flight changes, or cancel all my appointments and get my records ready for transfer. I’m serious about going to another hospital. Every time I go there my schedules get screwed up. I’m now looking at the services that Sloan-Kettering has to offer as I might give them a chance. Not because of my doctors, because nobody at the support staff level can make a phone call to communicate changes and understand the aggravation and money it costs to make these changes…not to mention letting the patients know!.

Why is it, when you are kind to incompetent people you get nothing done, but when you become an asshole they all become smart? 6:40 AM on Friday the hospital calls..."how soon can you get to the hospital on Sunday?" after getting up at 3 AM, flying 5 hours with a lay-over to Houston, taking cabs, skip checking in at hotel, FASTING FOR 24 HOURS, and get to the hospital ASAP for blood work, only to be asked to be at the hospital... at 6:00 AM on SUNDAY? When two weeks ago this was scheduled on Monday AND when asked WHY THEY WOULD MAKE A CHANGE LIKE THAT WITHOUT CONSULTING ME...SHE SAID...SHE SAID..."""""We must have made the change to accommodate another patient"""" WTF??? Did I mention I booked my appointments 6 months ago? WRONG ANSWER!!! Now I’m more than pissed.

After receiving 4 phone calls, appointments have been moved back to normal. The schedule is still screwed up, but it fits my time frame. But when I pointed out that blood work needs to be done first BEFORE my CT scan and they had me drawing blood dead last on the schedule...there was a long pause (crickets) on the phone. Then I got...OK just come in around 7AM (my schedule says 6AM) get your blood drawn, wait about 45 minutes for results and then go to your CT scan, we will fit you in.

They need to test BUN (blood urea nitrogen) and Creatinine blood levels before a scan. Blood has to be drawn FIRST, mostly to make sure the patient's kidneys are properly functioning and can take the radioactive dye they inject...but what do I know about that, right? I'm just the patient.  I guess I'm really being too picky at this point huh? It's really scary when you begin to think you know more than they do! Knowledge is a dangerous tool that could save your life...remember that.

Wait until you hear what comes next as I descend upon MD Anderson with an attitude! Stay tuned.

Peace B

***The saga will continue after the holiday! Merry-Happy to all!

The Cancer Chronicles 41

Lumps, Bumps, and Shooting Blood!

I’M BACK…and boy do we have a lot to talk about!

Ok…so it’s been forever since I’ve been here bitching about my life with cancer. That’s because life slipped into a kind of normalcy. As a cancer patient you long for the days when life was “normal” (whatever that really is) but to me it’s life without pain issues, medications that make you nauseous, and the fear of dying. You hope that the exhaustion and the depression disappear as quickly as they came. Despite all of that still being present, I still try to exist as though it’s not. Cancer ages you physically, mentally, and emotionally.

Some find a day when they are told they are cancer free and hope life goes right back to where it all began on happier notes, but not everyone. Cancer stole more than my tongue, it changed my entire way of life. Now some changes have been for the better, but then there is a definitely a darker side.

There comes a point if you are one of the lucky ones, where the cancer is at bay and push to get back to a normal life. I’ve been pretending I’m normal for about a year (no comments from the peanut gallery!) until one day I realized my cancer might have returned. One evening while having a massage, my massage therapist noticed a lump on the back of my neck the size of a small egg. I said, “I thought that was a muscle back there.” She said there is no muscle located in that area. AW CRAP! I’ve been clean 4 years and what I have feared most might become a reality.

There is no pain, just a fatty hard lump on the base of the back of my neck pressed against the spine. I have had a little trouble tilting my head all the way back when drinking, but I attributed that to the residual scar tissue from the surgery to the front of my neck.

Oh but there’s more…It has been a very difficult last 6 months. A few days after finding the lump, I had a horrifying ordeal when I noticed a thick hair protruding from my neck in the area that has never healed for four years. Since radiation, I have lost all my hair in the field where radiated. I even lost my mustache I’ve had since it first grew in and I became a big boy. I never shaved it off, ever. It just fell out. So I have no hair from my earlobes to the bottom of my neck, not really a bad thing because I don’t need to shave anymore. HOWEVER, a stray hair pops up on occasion and often causes an infection at the sight, if ingrown.

One day I found this thick “hair” protruding from my neck where my neck was sliced open during surgery. I figured I'd pull it out. I got the tweezers and pulled! Out came a very small piece of metal with some VERY fine wires attached. What I thought was a hair actually was left over shrapnel placed during surgery. Over the next few days more “hairs” started to appear at the sight, but one became more than I bargained for. When I pulled the thickest of them as I was staring in the mirror, I watched the most beautiful stream of bright red blood pulse out of my neck. The stream pumped and shot half way across the room!

At first I stared in amazement thinking, “Wow...that’s pretty cool,” until I realized the severity of what was happening. You guessed it, this wee piece of metal was lodged in an artery and the blood flow took several wash rags and towels to stop over the next hour. I should have called EMS, but I still didn’t think it was that big a deal at the time. This happened once before, but the bleeding stopped within 15 minutes.

So I went to Urgent Care where the doctor wanted to put me in the hospital. She saw the festered neck and looked at the lump on the back of my neck after explaining it was there before the fall and I am a cancer patient. She was actually panicked and that’s when I realized how serious this was. She swabbed my neck for a culture checking for Mersa (golden staph) and gave me a script for antibiotics: Bactrim and Levaquin. The culture came back negative.

I held in my hand a dozen or more pieces of metal which appeared to be parts of a Doppler wire and a few clips. I recall the day the wire was removed from my neck, the doctor just yanked and it snapped out of in my neck. I asked at that time, “Is that all you do? Isn’t there something left in there?” I recall being told it’s all surgical grade material and I have plenty of pins and things in there from surgery keeping me together until I heal. Some parts might be absorbed by the body, others will remain and should not bother me. HA!

If you recall, after my tongue was removed and a flap from my forearm replaced the missing muscle, a Doppler wire was installed in my neck. This was to check the blood flow to the “free flap.” skin taken from my forearm. Everyday I turned on a machine to listen to the blood flow. If I heard a whooshing sound, all was well. But, if I did not, that meant the blood was not getting to the new tongue flap and the tissue would die. Blood flow needed to be restored within hours. If the tissue died, I would have needed to start all over again with another donor area for more tissue. I actually slept with this machine attached to my neck by wires while in the hospital.

A few days after my spewing blood incident, I tried catching up on some yard work. Working to get life back to normal, I got the ladder and chainsaw out to begin trimming some palm trees. I guess I’m not as young and resilient as I used to be. Short Version: Climbed the ladder, swung the chainsaw to the right, the ladder shifted left, I realized what would happen next and threw the chainsaw as far as I could, and then fell down and went boom!

The next thing I know, I’m lying on the bed with my neighbor getting me pain medication I was requesting. I don’t remember falling, how I got into the house, how much time had passed, and I have no idea how my neighbor ended up playing nursemaid. She told me I called her. I don’t know her number! I would have had to make a real effort to look it up…all without knowing. WOW!

SIX WEEKS IN BED….SIX! I had pulled and stretched a groin muscle and twisted my right arm. Nothing was broken, but the pain to walk was almost unbearable! After the six weeks, I used a wheeled walker for the next few weeks limiting my mobility. I honestly thought life as I knew it, trying to be as independent as possible, was over. About week ten, I awoke one morning with only slight pain and began to exercise to regain my much lost muscle tone-what little I had to begin with!

I knew I had to get to MD Anderson Cancer Center in Houston to have my neck lump checked out, but I could not travel until I could walk and that screwed the whole summer up. I didn’t want to think about cancer, being sick, or what my future might be in a wheelchair; even though I was reassured I would heal and be back to normal soon. AGAIN…whatever normal might be.

So the appointments were set up in June to see my cancer doctors in December. It’s not easy using doctors so far away, but I’ve always said I wouldn’t be alive today without them. So, I thought it time to catch you all up on what will be happening next! I'm headed back to the MD Anderson Cancer Center. Stay tuned.

Peace B