Beyond The Glass Door

FINDING HAPPINESS

noreply@blogger.com (Dr. Swill) — Thu, 19 Jan 2012 14:45:00 +0000

People ask me all the time how I can be so happy or make fun of situations like cancer when I have been through so much tragedy. Tragedy is a perception. Happiness is a decision, not an event. If you find you are unhappy about certain circumstances in your life you don't need to change the circumstances you need to change your perception of the circumstances. When you are in difficult times you often think you are the only one that is. You feel detached from the world. Yet all the problems we face are the same problems that have always existed. We need to change our focus and view these problems differently. We need to transform the mind.

Chose to be happy! Stop the perpetual negative comments about these problems. If the horse is dead stop beating it! Snide comments only reinforce your unhappy state. Stop constantly complaining about the kids, the husband or wife, your job, the government, were you live etc, etc. Positive communication often helps one understand what has gone wrong and can put one on a more productive path. When things go wrong in life, we have to face them and correct them, but don't focus on the negative. Look for the things to be grateful for.

I'm not saying that you should not fight for what's right or stand up for yourself when needed. Being overly passive can be a counter productive. But, if you are an unhappy person in your heart, you have the power to change that. If you are still breathing, you have a lot to be grateful for.

Peace B

Random Thoughts

noreply@blogger.com (Dr. Swill) — Mon, 09 Jan 2012 06:35:00 +0000

Some people lose their faith because Heaven shows them too little. But how many people lose their faith because Heaven showed them too much?

The Cancer Chronicles 43

noreply@blogger.com (Dr. Swill) — Sun, 01 Jan 2012 04:06:00 +0000

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

noreply@blogger.com (Dr. Swill) — Fri, 23 Dec 2011 23:32:00 +0000

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

The Christmas Tree

noreply@blogger.com (Dr. Swill) — Tue, 20 Dec 2011 23:00:00 +0000

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

noreply@blogger.com (Dr. Swill) — Sun, 18 Dec 2011 03:23:00 +0000

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

noreply@blogger.com (Dr. Swill) — Sun, 11 Dec 2011 01:40:00 +0000

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

HAPPY THANKSGIVING!

noreply@blogger.com (Dr. Swill) — Thu, 24 Nov 2011 21:42:00 +0000

HAPPY THANKSGIVING TO ALL MY FRIENDS AND FAMILY! Be thankful for your good health this season. As you sit down and enjoy your meal, be thankful you are able to eat and enjoy it. Cancer stole that ability from me for almost three years requiring me to use a feeing tube. After that I have never been more thankful to be able to speak and eat, something I once took for granted. What are you thankful for this season?? Peace B

REPOST FROM LAST YEAR

noreply@blogger.com (Dr. Swill) — Sat, 29 Oct 2011 03:07:00 +0000

HAPPY HALLOWEEN!

KNOCK KNOCK

Anybody home? Guess I’ve been away longer than I realized. Things have been so crazy on this end just trying to keep up with everything…and you know what they say: “If you don’t have anything nice to say, don’t say anything at all.” Guess I’ve been a little grumpy lately.

After mom died I spent the summer trying to get her house cleared out and ready for sale. It’s been on the market for months and the added responsibilities and expenses are not always easy to deal with. It’s all very draining, emotionally, physically, and monetarily. I am starting to see the dust settle and I’m feeling better with more energy than I have had in months.

I want to thank all of you who have posted and sent emails wondering how I was, THANK YOU! I guess for me it was easier to pretend cancer wasn’t a part of my life while I dealt with some of my life’s other realities.

TRICK OR TREAT!

Last year my mom so badly wanted to hand out candy for the Trick or Treater’s. I just didn’t think it was such a great idea to be exposed to so many people with both of us not being well. But mom was insistent and so I brought Dr. Swill to life with mother as my patient and that would be our Halloween costumes.

Dr. Swill Lives!

So, I put on some scrubs, a mask, glasses, teased up my hair, and rolled mom out the front door with her oxygen and an IV pole in tow and prepared to greet the little buggers. Mom and I both had so much fun that night. That was the last time we shared a holiday together without her either being in the hospital or a rehab facility.

During the evening a little boy dressed as Superman approached mom on the porch with a puzzled look on his face. In a very serious tone he asked me, "Are you a real doctor?"

"No." I said, "Just a pretend one."

Then he asked mom, "Are you really sick?"

"Yes," She replied "I'm really a very sick patient."

Without hesitation he jumped at me pointing a finger, "You shouldn't go around pretending to be a doctor. Doctors help people. She needs a real doctor now and you can't help her!"

For a brief moment I almost forgot it was Halloween. The situation became too real. All pointed out by a pint sized Superman with an attitude. SNAP! Mom asked sweetly, "Don't you want any candy?"

"Sure!" he growled as he disapprovingly scowled at me. His father, standing behind him just shrugged his shoulders and smiled as I smartly quipped, "Your son's going to be a great lawyer someday." (Anybody know where I can buy some kriptonite?)

This year sadly, I’m not in the mood to play doctor or greet goblins so the lights will stay off and I’ll watch a scary movie with popcorn. I just don’t think it would be any fun. Next year I promise to set up a killer haunted house and have some fun.

Happy Hauntings…Peace

For the Newbies

noreply@blogger.com (Dr. Swill) — Fri, 19 Aug 2011 20:52:00 +0000

WHY?

For those of you who are just stumbling upon this blog, I have had a wild ride with tongue cancer (squamous carcinoma of the left later tongue and floor of mouth.) You might want to start at the beginning of "The Cancer Chronicles" for the full story located in the archives under "Search by Label" on the lower right. I'm still alive - a survivor - but it wasn't pretty nor easy, yet I am one of the lucky ones. That thought should bring great happiness in the fact that I'm alive, but the reality is I get depressed when I realize how many have lost the battle. Many of the people I grew to know during my journey are no longer here. I NEVER like to ask "Why?" It breaks my heart when I count all those I befriended and realize they left so many friends and family behind, and so far I survive. There is never an answer to "Why?"

My journey begins here: THE VERY FIRST BLOG POST (CC1)

There was one question I did ask repeatedly during the toughest times.

Peace B

Biz-Biz-Bizy!

noreply@blogger.com (Dr. Swill) — Thu, 14 Apr 2011 09:41:00 +0000

M.I.A.

OK T GRANNY!! I've Been Busy!

I have been so F'n busy I can't even begin to explain and I am so tired.

After the Houston audition for AGT I wasn't feeling so confident. I was feeling great until the girl ahead of me belted out a tune that rocked. When I stood in front of the producers I began to sing and on the second verse sang the wrong words. A pro would have kept going...but...I stop very matter of fact said, "Nope that's not right." I turned to the girl that just sang and said, "You are really good. You intimidated the hell out of me." The producers said I could start again and I rocked it the second time. BUT...this is a live show and I can't imagine them picking someone who had to start over again in an audition. That's the kiss of death.

A tweet went out to everyone who auditioned in Houston last week letting us know anyone going on to the next round will be called by this Friday. Confidently, I'm not expecting a call...but it was fun. I really wanted to find an avenue to further educate and inspire others about tongue cancer. I have a few other options, but I need to raise some money to make them happen.

A few weeks later...I had to go back to Michigan because my mom's home sold. I had to hold an Estate sale and clear out the house in 10 DAYS! I have not had access to the Internet since all the services are shut off. I could only get online using dial-up and was unable to post.

When I arrived in Michigan it had just snowed and I had to shovel snow for the first time in over 30 years! Now I know why I left Michigan and moved to California! OMG it was so cold. I thought I was doomed, but the day of the sale the heavens opened up, the sun came out, and spring arrived just for the weekend. All the snow melted and it was beautiful!

In just three days we sold EVERYTHING! People were buying 1/2 bottles of windshield washer fluid, jars of nails, scrap wood and metal...it was crazy. The postman came by to tell us that they were so flooded with phone calls asking where Field Street was, they could not get their work done. People were circling blocks looking for parking! No less than 40-50 people were at the house at any one time.

We had 3 sales people and 2 security/movers to help. I tried helping to move some furniture but ended up smashing my knee against the bricks of the fireplace hearth and quickly learned I might feel strong, but I've never regained all my strength back since my surgery.

Apparently we were the first sale of the year, it was the first nice day of the year and people wanted out of the house. Plus, Michigan is so depressed right now that an estate sale was a big deal to find great bargains and my mom had some great stuff. Added to that we were apparently competing with people coming out to watch the ice floe!! WHAT?

My mother's home was off the Saint Clair River which is a shipping lane shared by the US and Canada. So, in the spring when the ice begins to flow you see large glacieristic chunks of ice flowing rapidly and colliding to form interesting shapes. To be honest, I didn't realize it was so popular, but because it was such a beautiful day and the ice was flowing and the park was just down the road where people watched...we were swamped at the estate sale from the residual gawkers! GO HOOTERVILLE ...my pet name for mom's little town.

Who knew ice could be so interesting? The only time I care that much about ice is when I make frozen Margaritas!

In 3 days every bottle, nail, and mouse dropping was sold! Yes we had mice at the sale too! A week later I packed up the memories and hit the road taking my time to travel. Now this was not the smartest thing to do alone after busting my ass, but I managed.

I was able to stop and see friends along the way and even take in a play at their local Barter Theater founded in 1933. It got it's name because people bartered with produce to gain admission. It proclaimed, "With vegetables you cannot sell, you can buy a good laugh." Four out of five Depression-era theatregoers paid their way with vegetables, dairy products and livestock.

The Barter Theater

Think of it this way, they traded ham for Hamlet. At the end of the first season, the Barter Company cleared $4.35 in cash, two barrels of jelly, and a collective weight gain of over 300 pounds. Many famous actors played there: Gregory Peck, Patricia Neal, Ernest Borgnine, Hume Cronyn, Ned Beatty, Gary Collins, David Birney, and Larry Linville. WHO'S LARRY LINVILLE? Anyway...the play was very entertaining and enjoying it with old friends, even better.

The Barter Theater Cook

After I got back to the house, I slept for three days before attempting to empty the van. My leg I bumped on the fireplace began to swell and I noticed some redness. It had become infected and after a few days the whole left side of my face was also swollen. This was the area that received the most radiation. I have had this facial infection on 3 other occasions. Swiftly to the hospital to find some leg hair had infected my shin where I bumped it on the fireplace and a 3 inch hair was also pulled from my cheek/lip area that must have be growing under the scar damaged tissue after surgery, but never surfaced. I guess the leg infection must have triggered the face due to low resistance or something.

WELL...after a few days of recovery I thought I would head outside and do a bit of gardening. After working in a beautiful sunlit garden and feeling really good, I got stung by a wasp on the top side of my right hand which quickly blew up like a red balloon! I CAN'T WIN! A quick fix of Benadryl and a few hours later...all better. By now I'm a walking pharmacy! WHAT'S NEXT???

Another week in bed (maybe two) and I should be ready for my next adventure!

Thank you all for the emails and bitchy comments. I love you all for caring!

Now I lay me down to sleep...
Peace B

Back to Houston

noreply@blogger.com (Dr. Swill) — Fri, 11 Feb 2011 14:10:00 +0000

I DREAMED A DREAM

I can't believe how long it's been since I last posted. Life just seems to move more quickly post cancer. I still don't have the energy I once had. I have been receiving a lot of email asking questions about my cancer. Thank you all for your kind thoughts. I am putting together a post of the most common questions and will get that up soon. Most of the questions can be answered somewhere here on the blog, in the archives. I am trying to put it all into one easy post for the newer readers by answering the most asked questions.

Today I am preparing to fly to Houston to see my doctors and audition for America's Got Talent. Yup, I'm gonna do it. I never dreamed I would ever be able to sing again after 2 1/2 years on a feeding tube unable to eat solid foods. I feel I need to inspire others and sing for my fellow cancer patients who are unable to at this moment. It's time to give back and give them hope.

I'm still bandaged, in a lot of pain, and SO out of my element. I don't know if I have the strength to get through it, but I'm giving it my best and if something goes wrong the Cancer Center is just down the road! I'm not even there yet and already I'm thoroughly exhausted! I'm so tired of being tired!

I'm not sure how much of the process I am allowed to discuss. I will find out more when I audition. The contracts appear to restrict what can be discussed until after the show airs.

This is a preliminary audition that I don't think will be televised, but it will be taped. It will not be in front of the celebrity judges, but producers. I think if I make it through that round, then I compete on TV.

Wish me luck!
Peace B

Christmas Eve and all is Well

noreply@blogger.com (Dr. Swill) — Sat, 25 Dec 2010 03:00:00 +0000

Silent Night

Thank you all for your notes of concern...all is well. All my tests showed no sign of cancer and my eye surgery was called off, AGAIN! Despite the stars and halos (according to the insurance company) I am supposed to be able to see fine with correction (glasses.) I disagree, but there is nothing I can do until the cataract matures to the point insurance will agree to pay. I am 20/70 in my left eye, but 20/25 with correction according to my favorite doctor Stella Kim. I just love her. Is it possible to have a school boy crush at my age?

I had a little set back while in Houston. I was given a free hotel room for the week arranged by the American Cancer Society. It turned out to be more trouble than it was worth. I had planned to post all during my trip, but the chain of events left me with little time and too weak to manage. To sum it up, cockroaches, no heat, a broken water pipe in the bathroom that flooded my toiletries. After moving to a second room, I found another cockroach which I captured and marched down to the manager prompting a full floor extermination. Then, to top it all off...I got food poisoning compliments of the hotel's over priced restaurant which caused me to extend my stay until I was well enough to fly. If there is anything I can't stand, it's a poorly run restaurant! Enough said!

I have been very busy and much has happened since I went to Houston. Quick overview: Before I left I had another wonderful dinner with my nephew Matthew and his lovely girlfriend at Claim Jumper's in Fremont. Matt and his girl are both strict vegetarians. This made it difficult for them to find something to eat. They don't even eat butter or allow their foods to be fried in oils that might have been used to fry meat products. That's really too bad because I made up for the both of them and ordered steak and lobster. WHAT? I'm a carnivore and make no apologies for that. Are you honestly going to say something after I spent over 2 years on a feeding tube? OK, maybe I'm milking that a bit, but seriously I would eat anything after that!!! Butter the living room rug and serve it up, I'm game! Hey Maureen...WHERE'S MY YAK BURGER? HUH?

Christmas Eve Traditions

I wanted to play secret Santa early this year. Every year I gather blankets for the homeless and usually after midnight on Christmas Eve I head out to the city and quietly cover those sleeping in door ways. This was something I began doing 20 years ago when I had a eye opening experience that changed how I viewed the world.

I had gone to dinner at Ernie's on Montgomery Street in San Francisco. This was THE most luxurious restaurant I had ever had the pleasure to dine in. The service was impeccable and the food outstanding. It was on the high end of the price range. The famous mahogany bar with its intricate, stained-glass back was carved from a single tree, the walls were covered with maroon Scalamandre silk brocade, magnificent crystal chandeliers hung above the main dining area. The rooms were adorned with antiques from some of the greatest mansions of San Francisco. Ernie's had the distinction of receiving 32 consecutive 5 star awards and Alfred Hitchcock chose the restaurant to be featured in his film Vertigo. To say this establishment epitomized fine dining would be an understatement. Ernie's open around the turn of the 20th century, but sadly closed their doors in September 1995. I was honestly crushed. I have NEVER had a fine dining experience of that caliber since then. In fact I aways wanted to own that type of high end dining establishment.

That night I popped for $120 meal and was driving home in my new convertible Corvette. I was on top of my game and thought nothing about spending that kind of cash for a meal. I had everything a person could ever want monetarily speaking.

As I drove through the city I noticed an unusually large amount of homeless people sleeping under large pieces of cardboard and tattered rags, huddled in doorways trying to sleep on the cold cement stoops of homes and shops. It hit me hard how unfair life can be and how awful a life like that must be. I had everything and more and they had a cardboard box for comfort without a roof over their head.

I stopped the car and stared at one old man as he shivered before me, curled up in a ball alone. I thought, "That could be me someday." I remembered I had a blanket I just purchased that afternoon for my spare bedroom. There was nothing to think about. I grabbed the new blanket, got out of the car, and quietly shrouded an old bearded homeless man as he slept. I didn't wake him. I crept away and thought, "I need to do more." As I drove home that evening I promised myself I would begin to collect clean, used blankets from any source and every Christmas Eve I would drive into San Francisco and play Secret Santa to the homeless. I usually collected so many blankets that I needed to rent a van to deliver the tidings. It was my way of giving back. I would usually send out a press release for such an event because I was a media whore in business, but this was personal and it felt so good to do it without any ones knowledge. It felt DAMN GOOD!

For years I did this until I became very ill for the first time in 1995. After that it was hit and miss although my company was involved in helping Glide Memorial feed the homeless and sponsoring the Easter Seals Telethons. I made sure there was always some charity we were giving to, but nothing has ever felt better than playing Secret Santa!

My last night in town before I headed out to Houston for my annual cancer check up, I couldn't find enough time. I wanted to buy a dozen blankets and make an early Secret Santa run. It doesn't seem give me the same feeling unless it's Christmas Eve, although I know sometimes it's the only way I can accomplish it. There's something about doing it on that special night that just knocks it out of the park and makes my heart pound with joy.

From Houston I continue my tour to the Sunshine State. I won't be back until February as I will winter somewhere warm. So tonight I will spend a peaceful evening alone after an exhaustive 3 weeks. Tomorrow I will be one year older and wiser (I hope.) When I reflect upon the past, it was good...damn good, the future...well..that's not written yet.

I'm still contemplating on auditioning for America's Got Talent in February. I've rolled the idea around and thought how cool it would be to inspire others who might be about to give up on their cancer fight as I once wanted to, to give hope to those who might be wavering. Having a positive attitude and a will to live is more than half the battle.

And I think, if I won, I would donate all the money responsibly to cancer research at my discretion. Besides, I'm not doing it for the money, I want to inspire and give hope and maybe a little shock and awe. After all, who would expect a man that lost his tongue to cancer to be able to sing? My vocals are getting stronger and I think even if I didn't make the cut, it would be fun. My biggest concern is whether or not I have the stamina for it! I'd need a team of helpers for sure and maybe a wheel chair standing by. I'm really not sure what to expect. But then that's life in a nutshell...we never know what's just around that corner do we?

It's time to settle in with my hot cocoa, a roaring fire, and watch It's A Wonderful Life. I need my wings! Anybody here a bell? Yes, life is wonderful...tonight let there be peace on Earth.

God bless you all, Merry Christmas!
Peace B

The Cancer Chronicles 41

noreply@blogger.com (Dr. Swill) — Fri, 10 Dec 2010 21:28:00 +0000

A Season and Reason to Celebrate

Christmas Joy!

Last night I spent a very special evening with my friend Isabel. We have always enjoyed dining out together. It's kind of "our thing" and it is always best when you can spend one on one time without a whole gang. Better bonding time. It's more personal and you can connect and better communicate. Although Isabel and I don't always see the world the same way, (we drive each other crazy ~~sometimes~~ constantly) we are always there for each other. So, last night we had our annual Christmas Dinner at my favorite local restaurant in Fremont, Papillion's.

If you recall, Isabel was the one who selflessly spent months with me in Houston as I recovered from surgery after losing my tongue. She stepped away from running Walin Enterprises, Inc. to care for me. During a dark moment after my first cancer surgery, I was out of the hospital and recovering in an apartment located in Houston's medical center, I had a breakdown. It was the only time I was ready to let go and give up. It didn't look like I would ever talk properly again and I NEVER dreamed I would ever be able to eat food or sit down for a real social meal. I cried in her arms and told her I didn't want to live. I wanted to end it all and get it over with. Living this way was NOT living.

In true Isabel fashion she snapped, "Then I'm waisting my time here if you're just going to give up. I should just go home." The world has always revolved around Isabel in her eyes. I was used to it by now, but not understanding my pain didn't help. I was at the lowest point of my entire life.

That night I promised myself I wouldn't do anything rash, but if in one years time I had not made major progress, I would find a way to end it all. DO NOT JUDGE ME. Until you have been in my world, you could never understand.

At this moment I had endured ten and a half hours of surgery, my tongue ripped out, body parts and skin tissue were rearranged like a patch quilt, my neck dissected like a science project. I was sustaining life through a feeding tube attached to my belly, a mere 100 pounds wet, and I was preparing for weeks radiation and chemotherapy. All this and never knowing if any of it would actually save my life.

As you already know, I'm still here! My speech is remarkably improved and I can consume almost anything with minor modifications. I'm still scarred and I have issues with pain, but at this point it's manageable. My biggest issue, aside from the pain and fatigue, is the traumatized fat lower lip I have been left with after my mouth was filleted open to remove the cancerous enemy within.

During our Christmas meal last night we feasted on crab cakes, cream of asparagus soup, a spinach salad with hickory bacon, and a BIG whiskey peppercorn fillet with vegetables. I completed my meal with a Tawny Red Port, compliments of Charlie the owner. Every time I dine there he buys me a drink and though I'm not a drinker, I always graciously accept because he serves the good stuff!

During the meal I reflected upon the dark day I told Isabel I wanted to end it all if I could never eat again. I explained that if I had I not improved, this moment in time would have never existed. Tears welled in our eyes. This is why I said what I did. I didn't want to live without ever having moments like this wonderful holiday meal in my life. I hope she finally understood.

Happy Holidays Everyone!
Bon Appetit!

Check Up Time Again

noreply@blogger.com (Dr. Swill) — Tue, 30 Nov 2010 17:38:00 +0000

CT's and TSA

I'm already getting nervous. In two weeks I will be back at MD Anderson Cancer Center for an annual check-up; CT Scans, blood work, X-rays! Yippee! Plus as an added bonus, I'm going to attempt to have eye surgery, AGAIN. Last year my left eye wasn't deemed bad enough for insurance to pay, so my surgery was canceled. This year we try again. I still can't see out of it. Everything is a blur with halos, stars, and muted colors.

I'm really wondering what the screening process is like at the San Francisco Airport. You hear in all the media it's very invasive. I guess for a lonely guy that's not a bad thing. Maybe I'll go through a few times just to make sure they didn't miss anything. It will be the closest thing to a date I've had in a long time! Who would have ever imagined that buying an airplane ticket could get you to second base?

Do you think if we are attacked again, we all might get lucky and TSA will impose a 3rd base rule?

Hope you all had a great Thanksgiving!

Peace
B

HAPPY THANKSGIVING

noreply@blogger.com (Dr. Swill) — Thu, 25 Nov 2010 07:00:00 +0000

A Tongue Cancer Patient Sings on The X Factor!

noreply@blogger.com (Dr. Swill) — Mon, 22 Nov 2010 10:53:00 +0000

His name is Karl Dimachki, and today he is my hero! This guy, after having a neck dissection and half his tongue removed, had the guts to stand up and prove to no one else but himself, that he could still sing!

He appeared this year on Australia's X Factor. I am so inspired! Anybody want to sponsor me for America's Got Talent? I'd at least get the sympathy vote from Sharon Osbourne. I'm ready to rumble!!!

"If you have a dream, go on and do it because God will always put a hero inside of you."
~ Karl Dimachki

Peace B

For A Good Laugh

noreply@blogger.com (Dr. Swill) — Thu, 18 Nov 2010 13:50:00 +0000

Commercials from around the World

My favorite is the last one!
Peace B

WHAT IS IT?

noreply@blogger.com (Dr. Swill) — Fri, 12 Nov 2010 17:53:00 +0000

Can anyone guess what this beautiful thing is?

(Photo: Dr. Paul D. Andrews, University of Dundee, Scotland)

WE HAVE A WINNER!

THANK YOU TAMPA GRANNY!!!

The picture above shows two human cancer cells sitting next to each other just before they're about to divide into four cells. They're derived from the now famous "HeLa" line of cancer cells, which were taken from Henrietta Lacks in 1951 and used for medical research without her permission. Henrietta was a cervical cancer patient who died in 1951 from her disease. The HeLa cell is termed "immortal" because of its unlimited ability to contiue its reproduction. It's amazing that something so beautiful can be so deadly!

HeLa cells - not so pretty

Forever Peace B

WHAT IS IT?

noreply@blogger.com (Dr. Swill) — Thu, 11 Nov 2010 20:20:00 +0000

Can anyone guess what this beautiful thing is?

Click on picture to enlarge

Hint: It's not man made

Medical Marijuana

noreply@blogger.com (Dr. Swill) — Tue, 02 Nov 2010 09:14:00 +0000

Is Going GREEN Politically Correct?

Today the State of California will attempt the passage of a law legalizing "Recreational" Marijuana, with Proposition 19. In 1996 the state legalized the usage of “Medical” Marijuana targeted for use by those who suffer from cancer, glaucoma, and HIV. Some patients actually find relief when taking this for a long list of ailments. Others that use the drug for recreational purposes might refer to it as pot, Mary Jane, weed, 420, Maui-wowie, bud, grass, reefer, rip, Acapulco Gold (or Red), cannabis, smoke, wacky terbacky, dope, joints, hemp, TJ, golden leaf, or ganja and so much more, as well as a long list of other names used when teamed up with other drugs.

My company employed over one hundred workers, most being between 16 and 25. I tried to keep up with all of the marijuana terminology in an effort to stop it from entering my restaurants. I had a built in nose for the pungent smell, so very few employees ever got away with bringing it to work or being high while working. I always had a policy; I don’t care what you do on your personal time, but if you bring it to work or come to work with even the odor, you were either fired or suspended. In California it was ALWAYS a problem.

Myth or Miracle?
I’ve always been a non-smoker. I can’t stand the smell of any smoke product. I'd go as far as saying I have an allergy to it. The older I get, the more sensitive I seem to become. As a child I was exposed to heavy second hand cigarette smoke. My doctors have speculated that this could be the reason for my cancer, since I don't fit the typical profile of a tongue cancer patient. I do have many family and friends who partake in “mowing the grass.” Even my mother tried it.

I don’t consider myself a prude. I’ve always said if I smoked cigarettes, I’m sure I would have tried pot already. I was surrounded by "tokers" in high school and at parties we would sit around and pass a joint. My friends respecting my decision passed it right by me knowing I wouldn’t smoke. Now with cancer, mouth and neck pain, added to chronic back pain, I am a candidate for medical marijuana without a doubt.

I take enough Vicodin to warrant trying the green herb, but have always had an aversion to putting any kind of smoke in my lungs. After mom died a buddy came by for a visit. He knows my situation and the pain I’m often in and offered to “smoke me out.” I felt it was time to see what the hubbub is about. I'm going green!

After taking a BIG hit, which I coughed immediately back up, I relaxed and tried again. It left a burning sensation in my throat. After a half hour of being "baked" at "420" I was sleepy, comfortable, and mellow. I proceeded to bed expecting my pain to diminish, but it had not. It left me relaxed and cozy, but the pain was still there. I began to wonder if the whole “legalize marijuana for medicinal purposes” was a crock.

Not only did I find putting smoke in my lungs deplorable, but the smell was just overwhelming for me. A relative suggested I try cooking with it and it would work better for me that way. I guess I could create a Pot Pizza. The more you eat, the more hungry you become. Just ask for the "special topping!" How about a Bud Burger or a Maui-wowie Souffle? What a great way to increase business at the restaurants!

Now I have to wonder...Does this drug actually help people with chronic pain and lasting disease or is it just propagated by druggies who want to convince the general population that this is a safe and effective alternative to manufactured drugs.

Fourteen states and DC have legalized “medical marijuana” and now California will lead the way legalizing it for recreational use, if Prop 19 passes. I’d like to see the statistics on how many people (government officials) ran to their doctors for a prescription after it was legalized this year, in Washington DC. And you ask what’s wrong with the politicians in our country??? You can only imagine why it takes so long to get congress to act.

Dude, you gotta bill? Yeah man, ya wanna hit it? It's a real fatty. Gotta be blunt...I added a lot to it, special interest stuff! Dude, pass that bill this way. It's a Colombian bill bro. Is that something to do with immigration? When do we eat? Now we can really refer to them as a political “party."

Has this actually become a political issue just to garner your vote? With the November elections comes a new slogan “Just say NOW to Marijuana.” When asked how the party can get first-time Obama voters to show up this fall, the 78-year-old chairman of the California Democratic Party, John Burton, gave a one-word answer: “Pot.” Indeed, polls indicate that legalization could lure Obama voters to the polls like no other issue.

Pot is already big business in California creating a $2 Billion dollar medical marijuana industry. Some estimate that this could be one of the states biggest cash crops estimating over $14 Billion dollars in revenues. Others estimate $1.4 Billion dollars could be generated in tax revenues alone. This would also result in a savings of tens of millions of dollars annually to state and local governments on the costs of incarcerating and supervising certain marijuana offenders. This will create the second California Gold Rush for business entrepreneurs. Just think of the franchise opportunities!

In Oakland, Richard Lee, founded Oaksterdam University in 2007, a trade school that focuses their curriculum on the cannabis industry. I guess this is the best place in the country to seek “higher learning.” I wonder what Yoda would think? Maybe that's why he talks so strange...hum. He did appear to be stoned in Star Wars.

"Around the survivors a perimeter create. When 900 years you reach, look as good, you will not." ~ Yoda

The “mother-ship” is located in downtown Oakland, with a 300,000 square foot campus complete with classrooms, auditorium, and grow labs. There are satellite campuses located in Los Angeles and Flint Michigan.

For a fee of $250 you will receive 12 hours of instruction. The advanced course of 32 hours will teach “Methods of Ingestion” and “Cannabusiness 101.” They also offer a comprehensive “hands on” semester in horticulture. For those of you that over water your house plants, this one’s for you. They don’t dispense, they only teach. Really? REALLY?

Is all this really necessary? Do we now need an education to get stoned? Wouldn’t it be cheaper to just subscribe to "High Times” magazine and grow your own? I just don’t get it. As a chronic sufferer of pain and having tried it myself, I think the whole “medical marijuana” issue is just another excuse to make money, push political agendas, and get high. It's not medicine! Just legalized for what it is, a recreational drug, but don’t cloak your agenda by using it as a medical option for people like me. It’s just an excuse to legalize stoning! How much longer before we all go to pot?

Peace B
Dude!

States that currently allow the usage of “medical” marijuana: Alaska, California, Colorado, Hawaii, Maine, Michigan, Montana, Nevada, New Jersey, New Mexico, Oregon, Rhode Island, Vermont…and DC

UPDATE: Proposition 19 did not pass, with a strong 54.9% NO vote.

HAPPY HALLOWEEN!

noreply@blogger.com (Dr. Swill) — Fri, 29 Oct 2010 21:32:00 +0000

KNOCK KNOCK
Anybody home? Guess I’ve been away longer than I realized. Things have been so crazy on this end just trying to keep up with everything…and you know what they say: “If you don’t have anything nice to say, don’t say anything at all.” Guess I’ve been a little grumpy lately.

After mom died I spent the summer trying to get her house cleared out and ready for sale. It’s been on the market for months and the added responsibilities and expenses are not always easy to deal with. It’s all very draining, emotionally, physically, and monetarily. I am starting to see the dust settle and I’m feeling better with more energy than I have had in months.

I want to thank all of you who have posted and sent emails wondering how I was, THANK YOU! I guess for me it was easier to pretend cancer wasn’t a part of my life while I dealt with some of my life’s other realities.

TRICK OR TREAT!

Last year my mom so badly wanted to hand out candy for the Trick or Treater’s. I just didn’t think it was such a great idea to be exposed to so many people with both of us not being well. But mom was insistent and so I brought Dr. Swill to life with mother as my patient and that would be our Halloween costumes.

Dr. Swill Lives!

After a While

noreply@blogger.com (Dr. Swill) — Sat, 27 Mar 2010 01:57:00 +0000

After a while you learn
the subtle difference between
holding a hand and chaining a soul
and you learn
that love doesn't mean leaning
and company doesn't always mean security.

And you begin to learn
that kisses aren't contracts
and presents aren't promises
and you begin to accept your defeats
with your head up and your eyes ahead
with grace, not the grief of a child
and you learn to build all your roads on today
because tomorrow's ground is
too uncertain for plans
and futures have a way of falling down
in mid-flight.

After a while you learn
that even sunshine burns
if you get too much
so you plant your own garden
and decorate your own soul
instead of waiting for someone to bring you flowers.

And you learn that you really can endure
you really are strong
you really do have worth
and you learn
and you learn
with every goodbye, you learn...
© 1971 Veronica A. Shoffstall

The Circle of Life - Part 5

noreply@blogger.com (Dr. Swill) — Fri, 26 Mar 2010 15:29:00 +0000

February 15, 2010

The phone rings. I remember looking at the clock, seeing 6:00 and thinking …dang I must have fallen asleep in the afternoon and I need to make dinner. As I drew the phone to my ear, a women softly says, “Mr., Walin, your mother has just passed. I went into her room at 4 AM and she was sleeping comfortably, but when I went into her room five minutes ago, she was gone.”

“WHAT? WAIT? She died? She’s dead? She was only there to control her pain meds.” I was confused, it was actually 6 AM. I’m in shock. The nurse says, “Take your time and drive carefully, please don’t rush.”

My mother just died…I began to cry. My first thought was to call my cousin for help. “There is no way I can do this alone. PLEASE come with me,” I beg her. Within 20 minutes my cousin was there and another 35 minutes we arrived at the Hospice Center.

Mother was still in the room she was so impressed with, looking as though she was quietly sleeping. A foul odor filled the room as we entered. I thought, “Does a body begin to smell so soon after death?” Then it dawned on me, the odor became familiar. I asked my cousin to leave the room for a moment.

“Why? What’s wrong?” She asked. “Just give me a minute and leave the room.” I said in a half angry tone.

As she left the room, I put on a pair of rubber gloves and inspected mother’s colostomy bag. It was full and I mean brimming full! I sent four replacement bags with mom when she went to Hospice House. When I located the spare bags, none of them were used! They had not changed mom’s bag in 4 days - 4 DAYS! I was fucking pissed. “HOW DARE YOU TREAT MY MOTHER THIS WAY!!!!!” my mind said as my grief turned to raging anger.

I removed the overflowing bag, cleaned mother up, and attached a clean bag. I was so angry, I stormed down to the nurse’s station with my arm stretched out, bag held high above my head filled with mother’s steaming excrement, and angrily barked at the nurse, “DISPOSE OF THIS!”

The nurse gasped in horror when she realized what I was holding and apologetically said, “We would have taken care of that for you!” To which I angrily snapped, “I would have thought you would have done that BEFORE we got here. You had an hour to do it. I need air freshener NOW!”

After this issue was attended to we were left alone in the room with mom. In fact, it was a very long time. For the first time in 8 years, I was sitting in a room with my mother in peace. Pure silence engulfed us, no oxygen generator surging, no blaring TV, no loud nebulizer, not a sound. She looked so peaceful, almost happy. Her skin looked beautiful and her color was good.

My cousin and I spent hours with mom, talking about her and holding her hands. She honestly looked good. You would have never known she was dead. It was so very strange.

I sat back on the couch. As I tearfully viewed my mother so peacefully at rest before me, I finally realized what I believed she was trying to tell me the day before. She kept repeating the word, “Wood.” I couldn’t understand why.

As I stared at the bed, I realized it was made of wood. Even though it was an adjustable bed, it looked like fine Scandinavian furniture. There were 4 tree trunk wooden posts that supported the bed, no wheels, no bulky rails, no metal in sight. The sides were trimmed in wood and the bed appeared to be an oversized, perhaps a full size. This was not a hospital bed. I realized this must be what she was trying to tell me. I would have this in my own home. It was beautiful.

I wondered why we were left alone for so long. I was waiting for someone to come in and tell us what to do next and the staff was waiting for us to finish saying good-bye. Mother stayed warm for 4 hours, and looked as if she was only sleeping. Her fingers were nimble and her color looked normal. But when she began to feel cool, I couldn’t take it any longer. I was done with my goodbyes and it was time for the next step.

I went in search of an employee and asked, “What do we do now?” She asked what her plans for internment were. “Mom wants to be cremated and buried with the family in Michigan.” I explained.

“Well, which crematory are you using?” She kindly asks. This was a subject brought up two weeks ago by the visiting hospice Chaplin, who promised to give us some local options. Another ball dropped by this hospice group. He never got back to us.

After being given 3 options, we made a decision. Within 20 minutes mom was removed from hospice, draped by a royal blue crushed velvet blanket. This would be the last time I would ever see my mother.

To save time and understanding how I emotionally handle issues like this, we immediately head over to the crematory to make all the arrangements. I have always had a delayed reaction with my feelings. I’m fine during a major issue, solid as a rock some say, but give me time to think about it and allow it to sink in…well then I fall apart and often become a major mess. So, this had to be done now, today, while I’m in my “take care of business zone.”

I know mother was going to die, but 4 days ago she was flipping through a Pottery Barn catalog to buy furniture and only went to Hospice House to “regulate” her pain medication!

This all happened too quickly. Perhaps for the best, but I can’t help thinking mistakes were made, people were irresponsible, and I was just too tired to keep up with it all. I did the best I could, given my own health issues.

The nursing home failed to send mother to the hospital when she requested. She was wrongly sent to the hospital on a “non-emergency” and redirected to a hospital that was unfamiliar with her case history. Then, hospice failed ME miserably. But, to be fair they did take good care of mother with the exception of not changing her colostomy bag, which I will never forgive them for.

When I finally unpacked mom’s bag that was sent home with all of mom’s personal effects, I had a good long cry. The Valentine’s Day card and huge heart shaped box of candy were never opened. It broke my heart.

I have been asked by a few people why I would air such a personal story for all to read. It was actually moms’ idea. When she was in the hospital, just before she agreed to hospice, I took a picture of her in her hospital bed.

She asked me to make a video for my blog. When I asked, “Why would you want me to do that?” She responded by saying, “If I can save just ONE person and get them to quit smoking, it would be worth it. I know I did this to myself, but smoking killed me and my second hand smoking might have caused your cancer. I want people to learn from my mistakes.”

I love you momma, rest in peace.

The circle of life continues...another is born.

I can still hear my mother saying, "I gotta pee!" Benjamin Franklin once said, "In this world nothing can be said to be certain, except death and taxes." After watching this video and seeing the circle of life beginning anew, I'd have to add... "and ya gotta pee!"

Pee
B

The Circle of Life - Part 4

noreply@blogger.com (Dr. Swill) — Sat, 06 Mar 2010 05:16:00 +0000

The Reprieve - 2 or 3 Days

Friday - February 12, 2010

Mom is doing really well, but I am exhausted. A Hospice nurse, Trisha calls and informs me that mother’s paperwork was not properly filled out and she would like to swing by the house and take care of the matter.

When she arrived I expressed my disappointment that I am not getting any help with my mom. I was told they were a large organization with a lot of resources and I would get plenty of support. I was told on Wednesday a volunteer was finally scheduled to arrive on Saturday, so I could get out and get some grocery shopping done.

Trisha expressed her concern and called the office to verify the volunteer would indeed arrive tomorrow. She was informed the volunteer could not make it. This angered me. When were they going to tell me? Hospice sucks!

What gets me the most angry is that I have resources to help. Mom's long time nurse is waiting to return to work. Mom has used private care giving services in the past. They aren't cheap, but they are available with one phone call. We haven't called in the troops because of all the promises of all the help and support we would be given by hospice.

I've explained countless times...I'm sick myself. I don't know anyone here and the family is non existent at the moment. I'm doing this alone, at great risk to my health, and I need help!

I'm learning a very good lesson: Always cover your ass and if the promises come through, you're just further ahead. Hum... That's one of the first rules of business...I've already learned this lesson many years ago. I can see I'm not thinking clearly enough right now or maybe I've just heard so many great things about hospice, I really believed in them.

When my aunt died in my arms of cancer many years ago, hospice ruled. They were well organized, plentiful, and in her home 24 hours a day. They were so helpful, I almost felt useless. I guess that's why I thought this would be no different. I was wrong. I should have called in my own staff from day one!

Mom has been reading her mail and awake most of the day today. She's been more talkative than usual and has even taken the time to talk to several family members on the phone, giving all her latest news. Trisha asks mom what her pain level is on a scale of one to ten, a question repeatedly asked. Mom answers swiftly, “Five.”

“Oh that’s not good.” Trish replies. I try to explain, “Mom’s five is your two, her eight is your five and if she says ten, she is really in pain…AND if she knows the "candy man" is coming, the number will rise.” Mom is an addict with good reason, but an addict nonetheless. She has been on such heavy doses of pain medication for so many years, she calls Tylenol, M&M's.

I have been cautious to find the right balance that keeps her pain to a minimum, but not over medicating her.

Trish asked mom if she wanted to go to the Hospice House for 2 or 3 days to get her pain medicine regulated and then she could return home. This would allow me a few days recovery, the ability to get some shopping done, and give some time to myself.

Mom's Medication Shrine

3:00PM
It sounded like a good idea, mom agreed. Trish ordered transportation and then completed the paperwork. I had arranged for a much needed massage at 6 PM and was promised that mom would be at the Hospice House by 5 PM so there should be no problem keeping the massage appointment. I packed up an overnight bag for mom complete with directions, all her medications, a spreadsheet of how they are administered, and a four day supply of colostomy bags.

6:00PM
Well you guessed it…the massage therapist arrived to set up and mom is still here pouring over a Pottery Barn catalog, looking for bedroom furniture. I’m not really sure what she must have been thinking. The phrase, "You can't take it with you" comes to mind.

6:05PM
Transportation arrives…who wants a massage anyway?? Dammit nothing goes to plan. They had three hours to get here! They prepare to move her from her bed to the transportation gurney.

One of the people was a young woman small in stature. Mom begins to get testy. “You can’t handle me. You’re just a little girl! You're not strong enough! I don’t want you to drop me! Brian, help them or get someone else.” Mom complains. The young girl responds with a smile, “Don’t worry ma'am, I can handle you.”

I explain to mom that the young lady is a professional and she and her male partner know exactly what they are doing. Mom has her doubts.

With one quick swoop mom is shifted effortlessly onto the gurney and mom exclaims pointing to the young lady, “You’re hired!” Mom was pleasantly surprised and we all laughed.

As mom is rolled out of the family room, she hands me the Pottery Barn catalog and points to a dresser, directing me to order it for her. In disbelief I choked out, "I will, when you come back home momma.”

6:15PM
I’m on the massage table pretending the last 10 days never happened. It was heaven and so very needed.

7:30PM
The phone rings as I’m still on cloud-9 from my deep tissue workout. It’s mom! “Brian, you have to see this place. It’s beautiful. There are heartfelt sayings on the walls. It’s so tranquil here. My room is huge, with a dining table, a wall unit with TV, a large couch, a comfortable recliner, and a beautiful bed!” She made it sound like a suite at the Ritz.

“Mom,” I responded, “You make it sound like a resort. People go there to die!” She continued with, “Do you want my phone number?” She was really enjoying this. I had to chuckle as I said. “No ma, I know where you are. I will call you tomorrow.”

Saturday - February 13, 2010

This day never existed to me. I slept through the entire day, right through the next morning. I didn’t eat and don’t even remember getting up to go to the bathroom! My body finally gave into the much needed, uninterrupted sleep.

Sunday - February 14, 2010
VALENTINE'S DAY

I awoke to the disbelief that I slept through all of Saturday! Since it was Valentine's Day, I had to get a BIG traditional heart shaped box of candy and a card for mom. I arrived to the Hospice House bearing gifts. Mom was right, the establishment was peaceful and well appointed. Her room was located at the end of the hall and was even larger than she described. Each room was given a theme and mom's was "Listen." Scrolled above her bed was the phrase, "Listen with your heart and you will understand."

This was written above Mom's hospice bed

The hospice nurse explained that mom just had a bath and her hair was still damp. With her hair trimmed and freshly painted nails I did for her on Wednesday, she looked good, but something just wastn't right.

The temperature of the room felt cold to me. Mom was sitting up in her beautiful bed. On the tray table before her was the most expertly prepared meal. It was presented and appeared as appetizing as anything you’d find in a five star restaurant. I was VERY impressed.

Mom spotted me and said, “I like your sweater.” “Thanks mom, you’ve seen this before,” I responded with a puzzled look. There was a very strange look on mom's face. I was facing her, but it was if she looked right through me. It was a glassy, expressionless stare without blinking.

The nurse began to cut her meat and I said, “You better not expect me to cut your meat when you get home. Don’t get used to this.” Normally I would get a smartass response, but my comment was met with that cold stare.

I sat at the dining table watching her begin to eat her meal. She stabbed a piece of meat…and pressed…and pressed…and pressed. She pressed so hard, she bent the talons of the fork!

“Mom, you’re stoned!” I laughed

She looked up at me, fork swinging in the air as if she had Parkinson's and proudly announced with a big smile, “I’m on dope!”

“You sure are.” I chuckled, a bit concerned.

The fork waved in front of her face. She was shaking. I asked if she was cold. I got a very quick whisper, “Yeah.”

I draped her blanket firmly around her neck as she began to chew…and chew…and chew. I stared in amazement. She chewed that one piece of meat for ten minutes, maybe longer. “Are you going to swallow?” I asked with concern. No response. “Mom, you are absolutely stoned!” I said and again no response.

I went down to the nurse’s station to complain about the cold room and insisted on seeing mom’s med list. I was told by an aid they were unable to adjust the room temperature and because it was a Sunday, maintenance could not fix the problem until tomorrow.

I demand to see the med list and I was handed a copy of the same list I sent with mom. “No, I want to see what she is currently on.” I aggressively demand. I’m told that IS what she is on.

“NO, this is her regular list. She came here to “regulate” her pain medication. I want to know what changes you have made. That’s not my mother in that room. She’s stoned off her ass. I can’t even communicate with her. Get me someone in charge of this facility, NOW!”

Nervously the aid went into an office and spent five minutes talking with a nurse about my issues. The flustered nurse appears, nervously explaining that indeed mom’s Fentynol has been increased and morphine has been administered to relieve her pain.

I had a very uncomfortable feeling, like they were trying to hide something. I know my nerves are riding high, so I'm sure it's just me. I get a response from the nurse that I have repeatedly been given for weeks, in a very Stepford Wives tone..."This is the process." Well I got news for ya Joanna... I don't like "the process!"

I asked to speak with a doctor and once again I'm given a line that nothing can be done until tomorrow. “Tell the doctor I want to speak with him first thing in the morning. I understand my mother needs pain relief, but I want to be able to communicate with her!”

When I got back to mom’s room her meal was removed and a huge piece of chocolate cake rested before her untouched. She is still sitting upright, but her eyes are closed. “Mom, Mom…do you want me to feed you?” I quietly asked. All I got was a soft, quick, breathy, “No.”

I show her the heart shaped box of candy. “Look mama, I brought you something.” I say as I place an envelop with her Valentine's Day card in her hand. With a smile she says, “Goodies!” She held the card out as far as her arm would extend. Her arm slowly dropped to her side with the envelop standing up as she fell asleep.

Throughout our visit, mom kept repeating a single word that sounded like, "Wood." I couldn't understand what she meant.

I took this time to step out of the room and call the family to give them an update. After about 45 minutes I went back in the room and mom was still sitting up, card in hand, candy at her side, sleeping.

I reclined her bed to allow her to sleep more comfortably and lowered her lights. The movement of the bed woke her up and I began to massage the crown of her head and tell her how much I loved her. Her eyes rolled to the back of her head as she smiled. I said, “Your expression reminds me of how happy the dog was when I rubbed her belly!” Mom drifted off to sleep with a smile on her face.

I left the candy by her side and card still in her hand hoping that when she woke up she would read it. I turned, preparing to leave as she loving said, “Don’t leave me.” These words will resonate within me forever.

I spent another 45 minutes on the couch watching her rest, reviewing our last 3 years in my head, thinking how hard this all must be for her; The never ending hospital visits, years of rehab, nurses, doctors, and medications, the isolation and worry as her son maneuvered his way through cancer losing his tongue. It was all too overwhelming to recall.

I waited until I knew she was soundly sleeping before I crept away. On my way out I again announce to the nurse, “I will be back in the morning to discuss the regulation of mother’s pain medication!”

More to come...
Peace B