The Cancer Chronicles

OH TOOTH FAIRY...

noreply@blogger.com (Dr. Swill) — Fri, 16 Jan 2015 11:09:00 +0000

Before cancer I had a nice set of teeth with only 3 cavities my whole life. My father spent a lot of money on braces to make them perfect. After having radiation to my tongue and jaw area I was warned that I would forever have problems in those areas and it would be crucial to use a dental expert familiar with radiated bone. An extraction by an unqualified dentist might actually result in a shattered jaw.

You take that news with a grain of salt at a time you just cheated death. Eight years later my upper jaw has shifted about one full tooth's length so my teeth don't line up anymore. I'm told it's actually a result of the skin acting like shrink wrap on the jaw along with some muscle damage and bone loss.

A year ago I slowly began losing the lower horizontal half of an upper front tooth that just slowly wore away over time. I think tonight I lost the vertical half of my second one located directly below the first. I just noticed it was missing before bed. There was no pain or indication there was a problem and both teeth are still fully rooted. I'm not even sure it's worth having them fixed if they are just going to fall out eventually.

I've met several people along this journey who were told to have all their teeth pulled before having radiation. I was grateful they only wanted to remove two of my molars. And people ask if I ever get depressed! HA! I'm really not sure what else to say at this point....It's the gift that keeps on giving. Even when you think it's over, there is always something new waiting for you around every corner!

Peace B

Christmas Eve Traditions

noreply@blogger.com (Dr. Swill) — Thu, 25 Dec 2014 00:15:00 +0000

I had just finished an arduous day of last minute holiday shopping. It was Christmas Eve and I had treated myself to a lavish meal at Ernie's on Montgomery Street in San Francisco. This was THE most luxurious restaurant I had ever had the pleasure to dine in. My favorite of all my local hangouts.

The service was impeccable and the food outstanding. It was on the high end of the price range, but worth every penny to me. 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 procured from some of the greatest mansions in all 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 opened 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 always wanted to own that type of high end dining establishment like Ernie's.

Screenshot of Ernie's from Alfred Hitchcock’s "Vertigo" 1958

That night I dined like a king! I deserved it. I worked hard. I began with a bottle of California Cabernet Sauvignon. A plate of veal Oscar (sautéed veal on fresh asparagus tips, topped with Dungeness crab legs, and drizzled béarnaise sauce) magically appeared before me. Next to my delight the brandy caught fire, the blue flames shot aloft and an order of boffo crepes Suzette were summoned forth from a thin copper pan. The flames did their work, burned themselves out and vanished. It was theatrical heaven table side! And for the grand finale, a fine Cognac, or perhaps two to celebrate such a wonderful Christmas Eve.

After the $120 dining spectacle I was driving home in my new convertible Corvette. Life just couldn't get any better. 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 at my beck and call, monetarily speaking.

As I drove through the city making my way back to an overly grandiose home nestled in the foothills of the East Bay, 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, all alone. I just couldn't believe what I was seeing after thinking about the wonderful day I just had shopping and gorging myself on an overly priced meal. It was Christmas Eve and this poor man had nothing! I thought, "That could be me someday." The thought haunted me as I continued to stare in disbelief. I remembered I had a down comforter I just purchased that afternoon for my spare bedroom. A spare room...not even a necessity. There was nothing to think about. I grabbed the bag, got out of the car, and quietly shrouded the old bearded homeless man as he slept. I didn't wake him. I crept away and thought, "I need to do more." It felt good, and for years I told no one about what would become a Christmas tradition.

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 to capitalize on it because I was a media whore in business. But this was personal and it felt so good to do it without anyone’s knowledge. It felt DAMN GOOD!

For years I did this until I became very ill for the first time in 1995. Around the same time Ernie's closed their doors for good. After that it was hit and miss although my company was involved in helping Glide Memorial Church feed the homeless in San Francisco 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.

As I write this, I’m sequestered in bed fighting my second battle with cancer. I wish I had the energy to do more. There will always be someone who is in need of support and they might even be too proud to let anyone know how bad it is for them. Please do me a favor. Do something good in the world this year. Buy a stranger some coffee, leave an extra-large tip for the hard working wait staff, donate toys for a children’s charity, pay for a less than fortunate family’s entire holiday meal, or volunteer at a local homeless shelter or soup kitchen. If you can’t manage that…keep a smile on your face as you pass others in the street and actually say, “Merry Christmas” or “Have a great day” to strangers.

Make a difference to someone this year. If you have the means to read this story you already know you have more than so many with real need in the world. Someone desperately needs your help. Your heart will be richly rewarded. I guarantee it!

It's time for me to settle in with my hot cocoa, a roaring fire, cuddle up with my little dog 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 CHRISTMAS TREE

noreply@blogger.com (Dr. Swill) — Sun, 14 Dec 2014 22:24:00 +0000

Wish We Could Be Together At Christmas

I know some of you might have read this story before, but every year as the tree goes up I stop in peace to pay tribute to my wonder father. I think this Christmas story bears repeating. Happy Holidays! Peace B

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 each year, 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. He was a good listener and always offered sound advice.

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. I was the youngest franchisee at the time. 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 ablaze 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 and had a bad feeling in my gut. 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.” At that point everything stood still. 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 a flight on 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 trying to leave earlier. She asked for proof of his death and requested a copy of his death certificate. With that I exploded. All my emotions came spewing out. “I don’t have one! He just died!” I snapped. With authority she responded, “I need to see some type of proof.”

I became enraged, belligerent in fact. “My father is dead dammit! I’m not lying to you! What the hell is wrong with you? Why would I make something like that up?” 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. They couldn't do enough to make up for their mistake.

Seated next to me was a young boy, perhaps five years old, traveling alone with a large bag of toys. The flight attendant was well 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! His sh*t is everywhere!"

Apparently the lone child took out all of his toys from the paper bag his mommy packed and had strewn them all over the coach cabin without a care. 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*ck 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 at the baggage claim 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. I don't even recall saying good-bye.

As I entered my home I was in awe. 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. To perfectly finish it off, 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 Christmas card propped at the base of the tree. I felt my father in the room with me as I slowly reached down to 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? "Wish We Could Be Together At Christmas???" 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 fell upon the room, 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 that 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 still dormant after being placed back into its original box. I kept it for myself thinking someday I might put it up in my home, but it hurt too much to even look at 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

HAPPY THANKSGIVING!

noreply@blogger.com (Dr. Swill) — Thu, 27 Nov 2014 17:31:00 +0000

GIVING YOU THE BIRD

I just wanted to take a moment to say I'm still alive and kicking! The last few months have been grueling and I'm very tired. I hope I can catch you all up soon. Things are slowly progressing in a positive direction. Thank you all for your continued love and support!

On that note I give you all the bird! HAPPY THANKSGIVING!

Me basting my first bird

THE OTHER SHOE HAS DROPPED

noreply@blogger.com (Dr. Swill) — Tue, 26 Aug 2014 15:23:00 +0000

My Cancer Has Returned

After spending weeks trying to get what we thought was an infection under control, it became obvious this was a much bigger problem. I made an appointment at the H. Lee Moffitt Cancer Center to have a biopsy and a CT Scan which the doctor ordered. It's offical: My cancer has returned. The same type, a Cutaneous Squamous Cell Carcinoma of the skin.

The problem began as only a dime size ulcer only to take over the right side of my face starting under my chin and growing to a 6 inch X 3 inch oval climbing up my neck. If you are a regular here you know I've always said I was one of the lucky ones because everyone I have met has had at least one reoccurance...and now I join the group I was happy not to be a part of.

Now for a plan. Not so good news here. Frankly I was rather shocked. Squamous cancer of the Head & Neck which I had before is different than Squamous of the (exterior) skin. I'm told there is typically a very high cure rate if caught early. You cut it out and use chemo and radiation if necessary. That would be great if I wasn't dealing with a compromised immune system and my primary care doctor didn't think it was an infection allowing it to grow so large, AND if I hadn't already had 60 grys of radiation that really destroyed all my skin in the entire radiation field. I was left with extreme scarring and tight skin. Because of the past surgery and radiation they have been deemed not a good idea at this time, unless I want to cut my face off. For now my only option seems to be chemotherapy. Which is typically not used as an only resolve in a case like this and does not have a very good cure rate at all. Yes, I had myself a good cry over all this information.

My doctor at Moffitt sent me to see another doctor, Dr. Russell who was beginning a new trial using a combination of two drugs, a shot typically used for patients with Hepatitis-C (Peginterferon Alfa-2b) which I don't have and a pill used for breast and colon cancer (Capecitabine) again I don't have. Since my options are limited I thought, "Sure why not?" Trials are free right? WRONG!

I received an automated phone call a few days later telling me my prescription was ready and I could pick it up at a cost of $3,300. THIS HAS TO BE A MISTAKE!!?? And that was only the chemo pill. Nothing was mentioned about the cost of the shot. I'll get to the cost breakdown in a minute...hold on to your hats!

My next appointment was only a few days away and I made some calls looking for more opinions. I was lucky enough to find Dr. Edward Kim, my oncologist from MD Anderson. He has moved on to Levine Cancer Institute in North Carolina. Believe it or not it was through Twitter that I found him. The day I asked the Twitter account for Dr. Kim's information I was contacted within hours. I gotta say, I LOVE Twitter. It has save me several times. By the next morning I had his nurse on the phone getting my information and asking me to forward my medical history from the last time he saw me including what has been done at Moffitt. I trust Dr. Kim and the following day he spent 30 minutes on the phone with me going over what again I was told were, "Very few options."

Some of what he told me I had heard from Moffitt. I was hoping for better news. It seems that Squamous Cell Carcinoma is a common cancer, but the way mine has reacted and grown so quickly adding the fact that my options are limited because of the breaking down of my skin just makes my problem very uncommon. In fact so uncommon there aren't a lot of options because the drug companies don't want to dump money into a cancer problem they can't make a return on their investment. As a business person, I get it. As a cancer patient I think it's BULLSHIT! This is why my doctor a Moffitt is experimenting with drugs that aren't traditionally used for Squamous Cell Skin Cancer.

Now back to Dr. Russell's trial...As we sat and discussed the outrageous cost of the chemotherapy which I am expected to pay for, I asked about how much the shot would cost. He looked it up and in a monotone voice said, "The Peg-Intron shot would be $4,000." At this point I came unhinged and I think I used every word in the Do Not Use In Your Professional Life Dictionary. "You have got to be out of your FUCKING MIND! That's $44,000 for a six month TRIAL that has only had 3 patients and none of them had an positive result? This is nothing more than a gamble and I thought a trial was basically free if I'm putting my life on the line to be a guinea pig for the benefit of future cancer patients." And that's not including the weekly office visits, lab work, and CT Scans!

I think Dr. Russell was a bit shocked at my reaction. He said this didn't seem to be a problem for his other patients. I had to hold my tongue...well my forearm if you know what I mean. I could only think either these patients were millionaires, they were so desperate thinking they might die they would try anything, or they didn't understand this was not being covered by insurance and didn't ask enough questions. I think being a seasoned cancer patient must be a doctors worst nightmare. I've seen what happens when I don't ask the questions and the outrageous bills come in. Remember the $10,000 and the overnight stay at the hospital to just pull TWO TEETH? Yes, insurance paid the majority of it, but I was still left with a 20% co-pay.

At this point you all might be thinking...What about other opinions?? Why aren't you going back to MD Anderson? I needed Dr. Kim to reassure me I had very few options. MD Anderson is not in my current insurance network therefore I'd have to foot 100% of that bill and travel expenses are a killer. It ended up like Vegas. I left all my money there last time and my financial options are limited. Remember I've had 20 years of medical issues and until now I have been able to pay my bills without too much of a problem. But last time my bill was over $250,000 (20% of that was mine to pay) which I just paid off! Plus I had the expense of flights and an apartment for 9 months. I have made contact with Sloan Kettering in New York. I was told they are in my network, but again flying back and forth on a commercial plane with so many other people with my compromised immune system and finding a place to live during treatment will be an issue. They might have a trial there for my type of cancer.

At this point I have never felt more defeated in all the years. This new Obamacare is a mess. There are some good things to come out of it, but not if you really need to use your insurance. I have been on Medicare for a years now and recently switched to a Medicare Advantage Plan. Too much detail to discuss now. The bottom line I need an answer.

I found some things online that discussed Anti-Antigen Therapy I found interesting, but apparently it has not been tested on humans, but the trials with animals have been 100% successful. This is the kind of trial I wish I had access to:

SO...what am I going to do? This thing has grown so quickly and is more painful than any pain I've ever had. I made an spot decision when Dr. Russell kept asking me this same question. Starting tomorrow I begin with Erbitux Chemotherapy. Where did that come from?? Well, I was on Erbitux after my tongue surgery along with radiation in 2007. This drug works better when used with radiation, but that option is out. Unfortunately I was supposed to have 6 rounds of chemo when on I the 3rd I broke out in a rash of all rashes. It was EVERYWHERE! Front, back, in, out you name it, it was red. Then why would I try this again. To buy some time. To do more research in hopes to find a better answer. Maybe even another doctor, or cancer hospital. Or maybe, if Dr. Russell can find a way to bring the cost down on his trial I could try it. A little good news there. I was told that the $3,300 was a mistake because this is considered a Medicare Part B drug and not a Part D drug and when they ran it through the system that way it came back at ONLY $600 a month. Ok better, but holy shit! Plus $4,000 a month for the shot? The numbers still need work.

I can't help but thinking, "Wouldn't a cancer hospital know the difference between a Part B and a Part D drug? And if I was running a trial, I would have all that information ready and even find ways to help the patients financially if I really believed in the trial. Now I wonder if this trial was just something he pulled out of a hat one morning over coffee or is he actually going to save my life even if he bankrupts me in the process?"

This is going to be a very difficult ride this time. I'm so very tired of talking about cancer. It's done nothing but rule and ruin my life the last 7 years. I know I shouldn't complain because I'm still here to bitch about it, but even that is growing old and so am I!

Thank you all for your love and support. Wish me luck tomorrow. I've had a great life and I've been so close to death I could smell the dirt, but for some reason I'm still here. I gotta say, Dying is easy, it's living that is the hard part! I don't want to sound like a quitter, it's never been my nature...but I'm really ready to go at this point. i don't want to suffer anymore. From this point on I think it's only going to get worse. It's not a good sign when the positive outlook is gone. Even I know that.

Peace B

HOW MUCH CAN ONE MAN TAKE?

noreply@blogger.com (Dr. Swill) — Tue, 15 Jul 2014 05:50:00 +0000

MISERABLE!

I am over this shit! For the past eight weeks I have been fighting what we think is an infection on my chin. It started out the size of a dime and now measures 3 inches long. More shrapnel from surgery has worked it's way out of my neck just before this began. I now have a cap full of staples, wires, and tips from where they inserted a Doppler wire when they removed the cancerous tongue!

March 2014

June 2014

To the right of this is where infection began. Small at first, I went to the doctor. I tried a penicillin based antibiotic, Cephalexin. Ten days latter some relief, but not enough to solve the problem. So another ten days of the same drug. Twenty days later the wound had drained but was still not looking good. It was about five days later when I saw the doctor again and he put me on Dicloxacillian for another two weeks.

At the end of the two weeks the drug did absolutely nothing. In fact the infection site became bigger, harder, and SO much more painful. The pain is different than I'm used to. Yes, I said used to because I have several problems with pain in my jaw area, neck, and lower back. But even with medication this pain is different. It's like a hundred tiny needles stab me in the face and then it's gone. It's quick and comes out of nowhere. I'm assuming nerve pain? Bottom line is, my pain meds do nothing for it.

Finally I called the doctor when Dicloxacillian was finished and told him it didn't work at all. Now back to the one sulfur based drug that has worked in the past, but upsets my stomach, Extra Strength Bactrim. When I take this I just want to lay in bed and not move. The more I move the more it seems to upset my stomach. At this point my cheek is so swollen I bite it when I try to eat anything.

M-I-S-E-R-A-B-L-E !

Dinner has always taken me a long time to eat since I came off the feeding tube. Now it can take over an hour! I'm at a deficit with the new tongue fashioned from my forearm. The mobility is restricted and because it's smaller than what a normal tongue is, it's just harder to manipulate food. The swelling is making it even more difficult. I'm cutting up my food tiny pieces and only chewing half my normal amount while puffing up my mouth with air to chew so I avoid biting my cheek.

Since I began eating solid foods, I have always had to think when I eat. Where is the food at? What can I do to move it where I want it? A swig of water? A tilt of the head? Or maybe putting the fork back in my mouth the reposition the bolus of food. Sometimes I can't even hold a conversation at dinner because I'm concentrating on chewing. Over the years I've become more proficient allowing me to eat with friends without appearing like a total crazy person. The hard part is when I get something caught between my gum and cheek and it won't move. On a rare occasion I have to use my finger, which I try to avoid.

I've only been on the Bactrim for a few days now so the jury is out on whether it works or not. I see my doctor again in a few days and we'll go from there. I'm a little concerned if the Bactrim doesn't help because that could mean it's not an infection after all. I think the next step is a biopsy and/or hospitalization. I'm either becoming immune to antibiotics or my cancer is back. A few areas of my neck appear to have slightly swollen nymph node activity. When they did my neck dissection during my cancer surgery they found cancer in the lymph nodes and that's what prompted the need for radiation and chemotherapy. I would NEVER suggest radiation to the face unless it was your last option. I'm not sure I have the energy to go through all that again.

I don't want to leave the house. I look hideous. I can't do anything outdoors for fear of sweating and making the infection worse. I can't take anymore of this shit! Just shoot me! I'm FK'N MISERABLE! And maybe a little bitchy too...more than usual!

No Peace this time...B

A Hero's Message on Memorial Day

noreply@blogger.com (Dr. Swill) — Fri, 23 May 2014 22:40:00 +0000

In honor of Memorial Day and Skin Cancer Awareness Month a message from a brave hero, Bob Pemberton: A strong Veteran and Cancer Warrior whose last selfless act was to leave this message for others to learn and grow...Mr. Pemberton...I salute you!

Dead Man Talking

By Brian N. Walin

After living with my cancer for many years now, I have met several cancer patients along the way. Most have some other type of cancer. Only a few have the same, rare tongue cancer that I do.

What makes this story so difficult to write is the fact that most tongue cancer patients I have met along my journey are no longer with us. Squamous carcinoma of the oral cavity is responsible. This is an extremely aggressive cancer that leaves the recipient with a 50/50 chance to live five years, after being diagnosed. If it has infiltrated the lymphatic system, it can further worsen those odds by an additional 25%.

In 2007, after being diagnosed myself, I began to aggressively fight back. I underwent several operations to remove the Stage IV venomous growth along my left lateral tongue and the floor of my mouth. Cancerous lymph nodes were excavated from my neck. An uncomfortable tracheotomy allowed me to breath. The corners of my mouth were filleted open to allow access to the project within.

Body parts were rearranged: a skin graph from my thigh covered the hole that was left after removing a skin flap from my forearm that was then used to fashion a new tongue. Dangerous radiation and cancer killing chemotherapy followed…more invasive surgery to my oral cavity and a two and a half year engagement with a life sustaining feeding tube protruding from my belly.

After months of speech therapy, mouth and tongue exercises, food modification, depression, and mounds of mind-numbing medication, I’m exhausted. I’m still alive, winning my battle, and eating some solid foods, but always concerned cancer will strike again and I will repeat this dance anew.

The clock is ticking. Half of my time here is gone, according to statistics, yet I am still cancer-free. In my mind I fear the evil will return. I think that is a fear all healthy survivors have. You live day to day with that cancer cloud looming overhead. I’m free, but am I really?

Every time I lose a fellow tongue cancer patient, it’s a staggering blow that brings me front and center to the harsh realities of this dreaded disease. I personally don’t have an issue with dying. I’ve faced that road before. It’s the suffering, pain, and overall loss of the quality of life that goes along with continual treatment that is an issue for me. Horrifically, “life altering” does not begin to describe the reality of the situation.

Many friends and family members of cancer patients ask themselves, “What do I say at a time like this? How do I react? What can I do?” or even, “Why?” as they watch their loved ones suffer a slow, agonizing defeat.

First, let me go on record to say there is no answer to, “Why?” It is what it is! It isn’t anybody’s fault. It’s not a punishment, nor is it anything you have total control over. For those of you with controlling personalities such as myself, let this one go!

Having been close to death a few times now, I feel I can give advice as to how you should treat a cancer patient. Just treat us as you always have. No matter how bad we look or how weak we are, we want life to be as normal as possible. Save the tears, we don’t need them. Jokes are a good thing, laughter is best. Reminisce about the good times, and hugs are always welcome, if not longed for.

We are no different with or without cancer, even if we have no hair! Be honest with us and yourself. We know our odds aren’t good. Don’t make things worse by throwing a pity party. Now is not the time to hide from the truth. While life hangs in the balance, emotions are raw. Don’t say or do things YOU might regret later AND say all the things you wish to say, before we are gone. We need to hear them now.

We need a caregiver and patient advocate who is strong and caring and understanding of OUR wishes and not those you think we want. If others object to the plan in motion, remind yourself, these are our wishes, not theirs. This could be our finale, our last goodnight, and therefore needs to be our choice how things should be managed.

Personally, I don’t like to be fussed over. I prefer to do as much as possible for myself, even if it appears I’m struggling. I will let you know when I need help. I need that independence to get my strength back. If I let you do too much, it’s like saying, “I give up!” which is never a good thing. I think it’s essential for a cancer patient to remain emotionally strong and independent to survive, if not be down right stubborn.

I’m compelled to write this, because once again a fellow tongue cancer patient’s life hangs in the balance. The harsh realities are rearing their ugly heads. Bob Pemberton, is a friend and fellow tongue cancer patient. I met Bob after I completed my last surgery, while still sporting my feeding tube. We had a long “talk” about life with tongue cancer and the necessity of a feeding tube.

Bob, is someone I look up to after being through so much more than I have at this point. When I now look at Bob, I see what my future might be. He’s like the senior classmen and I the novice freshman student.

I generally maintain this blog to surround readers with my life and my cancer issues…Me, Me, Me! But, today I am inclined to open up the door and let Bob in. Not just Bob, but other readers and fellow cancer patients. I thought I would set the stage and have an open, raw, discussion with a man who is facing a death sentence. Something has compelled me to do this. I can’t tell you why, but I think either selfishly I need it, or I feel that others need to hear it. Especially those who are healthy and think they have something to worry about. Perhaps we’ll even touch on the meaning of life.

For me this is a personal project. I wanted to enroll the help of several people who are also surrounded by cancer in some way, to interview Bob. My goal is to obtain an open and honest dialog about doctors, treatments, and what it is like when you’re not sure if there is a tomorrow. For those of you who get upset because you get caught in a traffic jam, or have lost your home or job in this bad economy…look out, this might just change how you view the rest of your life!

If you had the opportunity to ask a dying man life altering questions, would you, could you? In Part 2 of this blog post you will find six seasoned cancer veterans who volunteered to step up and ask Bob some riveting and emotional questions. Bob has agreed that EVERYTHING is on the table for discussion. This has not been easy for any of us involved. So, stay tuned for the most enlightening story I’ve ever written.

LINKS: PART 2 - PART 3

I've Met My Match

noreply@blogger.com (Dr. Swill) — Thu, 03 Apr 2014 04:29:00 +0000

Well, where do I begin? Nothing earth-shattering, just trying to get back into the swing of things. I've said it before and I will say it again...I KNOW I'M ONE OF THE LUCKY ONES!

I'm now into my 7 year Cancerversary and life should have returned to "normal" a long time ago. As a cancer patient you fight hard to survive as you watch some on your fellow warriors lose their battle and you begin to wonder if you are next. I started this blog as a means to communicate to friends and family what was going on in my life so I wouldn't have to repeat myself every time the phone rang.

Over time it morphed into a way to vent about my struggles and then a way to help others through theirs. As time progressed some of those I met at hospitals, doctor's offices, and this blog became friends. We shared our highs and lows through emails and other social media, but then things started to change. One by one I lost some of those people I began to feel so close to. We shared things with each other that only a fellow cancer patient would understand and we helped each other through of the rough times. Some of the emails I sent would not be returned and later I found they had lost their fight. Soon I would morn people I only knew for one reason, cancer. Some I had only known online.

I guess I should have realized this would happen, but I never realized the magnitude and the number that would die. Some of these people I knew for years. Last December I had the hardest blow of all. Jeanne Sather helped me edit this blog at times. Because of her blog, The Assertive Cancer Patient, which I referred to as 'Bitch Don't Mess With Me!" she helped me through more than just cancer.

One story she helped me with and I am most proud of was "DEAD MAN TALKING." A story of a fellow tongue cancer patient who was losing his battle and finally passed before we put the finishing touches on the story. Bob Pemberton was the first cancer friend that really hit me hard because we had the very same oral cancer. When I heard the news of Jeanne's passing I just went into a fog. She fought so hard to stay alive. There was nothing more she could have done to survive that she hadn't already tried. This woman was a force to be reckoned with.

She was a professional writer, editor, teacher, National Merit Scholar, jewelry designer, and lived with cancer for 13 years. She studied in Kobe, Japan, achieved a Master's Degree and Japanese Language and a second Master's Degree in Journalism. Jeanne was a translator, worked for a Japanese Broadcasting company and also worked for Newsweek among other news organizations. All this while adopting and raising two boys.

I guess this remains the hardest part about this blog and the people I meet because of cancer. There are times I get so tired of explaining how I can talk, how hard it was living on a feeding tube for so long, and how much my life has changed. I tried to wipe away the bad memories and pretend all is well and the worst is behind me. Looking in a mirror doesn't help. My battle scars are plentiful and bring me back to the day I lost my tongue every time I gaze into one. I avoid mirrors as much as possible and don't even allow pictures to be taken anymore.

Jeanne once asked me to send her a current picture and as tough as it was I sent here one. She was being kind I know, but she sent a simple note back..."Very handsome man." Friends have said I've had the scars and bandages for so long they don't even notice them because they know me from within. A very kind way to see others and so appreciated.

On occasion a stranger wanders by and has to ask the inevitable question often at a time I'm feeling very normal and cancer is not even on my mind. Then with one sentence I'm back on the operating table. Last week I was out in the front yard trying to tend to the flower beds when two young brothers four and five years old walked past eating candy. They stopped and very politely asked.."What happened?"

Doppler wires that came out of my neck 3/14

A few days before this I had another battle with those damn Doppler wires coming out of my neck. Last year at this same time I had the same problem. This year four more tiny wires worked their way out of my neck infecting it and causing great discomfort. Once again I am bandaged up for the quadbillionth time. I've been one big bandage for longer than I can recall!

I had surgery SEVEN years ago and my body is still SLOWLY rejecting the shrapnel I was told was made of surgical grade material and I would not have a problem with. THEY WERE WRONG!!!

Total Doppler wires that have come out between 2007-2013

ANYWAY...As the two young boys approached and asked politely the very question I am so tired of answering, I went right to my canned smartass answer. I sharply replied, "What happened? You mean to my face and neck? I got hit by a bus!" The young boy thought for a moment and then replied in a very serious tone, "Oh, well then...you should have driving the bus!" He put his liquorice stick to his mouth, pulled with a snap, and happily continued his walk down the street.

BAM! I've just been one-upped by a four year old! Yes, sometimes you just have to find the humor in all of it. Even if it takes a little man to remind you! Cancer can be funny.

Peace B

JUST CHILL OUT!

noreply@blogger.com (Dr. Swill) — Wed, 19 Mar 2014 16:17:00 +0000

Daddy is preparing a new post to update you all!

Love Dicky

World Cancer Day

noreply@blogger.com (Dr. Swill) — Tue, 04 Feb 2014 16:41:00 +0000

REMEMBER THE FALLEN

HAPPY NEW YEAR!

noreply@blogger.com (Dr. Swill) — Wed, 01 Jan 2014 03:17:00 +0000

Expect Nothing.
Embrace Everything.
Love Everyone.
Find Peace.
B

Heifer International

noreply@blogger.com (Dr. Swill) — Sun, 29 Dec 2013 02:13:00 +0000

I BOUGHT A COW!!!

"Why buy the cow when you can get the milk for free?"

There are several animals and other needs you can buy to help this charity. You can even buy a partial share in an animal. When you donate your hard earned money to a charity are you sure what your money is used for or how much of it goes to "executive expenses" that never reach the needy?

As you scramble for that last minute tax deduction, think about buying an animal for Heifer International. The business model is a sustainable method of using funds and not just throwing cash at the problem feeding only a select few. Your dollars buy something with a perpetual result, not just feeding people one time. It provides things they need to grow their own foods, teaching them that with their own hard work and your gift they can be independent.

Your gift does not just benefit one person. Families who receive your gift become donors as they pass the gift on to other families in their community. This allows them to help countless others as you have helped them.

If you can donate even a small amount, please help.

May you all have a blessed New Year!

Peace B

HEIFER INTERNATIONAL LIFESAVING GIFT CATALOG

UNTO US A CHILD IS BORN...

noreply@blogger.com (Dr. Swill) — Wed, 25 Dec 2013 18:35:00 +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, but 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

First day on the job and already napping. I just popped out and boy am I exhausted!

The Christmas Tree

noreply@blogger.com (Dr. Swill) — Thu, 05 Dec 2013 00:15:00 +0000

Wish We Could Be Together At Christmas

I know some of you might have read this story before, but every year as the tree goes up I stop in peace to pay tribute to my wonder father. I think this Christmas story bears repeating. Happy Holidays! Peace B

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.”

“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 and had a bad feeling in my gut. It was my Aunt Carol. This is a woman who NEVER calls. All she said was, “Brian, are you sitting down?”

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.

The Most Beautiful Christmas Tree EVER!

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

The Most Beautiful Christmas Card EVER!

To Dad,

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

Love Brian

LIFE KEEPS GETTING IN THE WAY OF ME DYING!

noreply@blogger.com (Dr. Swill) — Thu, 01 Aug 2013 20:13:00 +0000

TODAY I MADE MY FINAL PAYMENT TO MD ANDERSON CANCER CENTER for saving my life and most of you will be sorry for the rest of YOUR life! It's like paying off a house! When you do that you have a mortgage burning party...what do I burn for this occasion??? :-)~

NO I don't condone smoking...just thought it was a funny photo

BILLS, BILLS, BILLS

When the bills begin to pile up and all you want to do is survive...what do you do? I have met so many people who struggle with paying medical bills while trying to live a comfortable life in the process. Most hospitals and some doctors will allow a reasonable payment program to be set up giving you the opportunity to make a fixed monthly payment. Be proactive about this and don't wait until you start receiving collection notices. But when life saving services run into the hundreds of thousands of dollars like mine and you still have a 30% co-pay, you could be faced with an amount equivalent to a house payment.

For this reason even people who have good health insurance are forced into bankruptcy just to stay alive. Sometimes the entire family ends up sucked into this downward spiral at the darkest hour. I've met a few who have had to do this and I often wonder what I would do in that situation. For me, so far, I've been lucky. I have the resources and the access to some of the best medical care available. And as I pay off one hospital, I continue to incur more debt in the next. Even when you are considered cancer free, there is still some maintenance with a watch and wait protocol as well as other lingering problems associated with treatment. There are things I need (or want) that I'm not able to have because of the mounting debt I've incurred, but I'm one of the lucky ones who has the resources to stay ahead.

As I look around the house I realize how much I let go, because I was just too sick to care or was too afraid to spend any money, so I wouldn't lose my home if things got really tough. YES, I can be a tightwad...I prefer the term "frugal" thank you very much! Perhaps I shouldn't have worried so much about not getting things done, but when the roof starts leaking, the house hasn't been painted in over a decade, a second car that hasn't run in over 3 years is sitting in the driveway, and you're sleeping on a 30 year old lumpy mattress, it's probably time to get motivated. Because I've seen the financial devastation of others along the way I can't help but worry. I started my career early, made a lot of money, and invested well. My life was planned out so that by the time I was 50, (2 years ago) I could do anything I wanted in comfort.

I was going to travel, see the world, and set up a foundation to help others in need. I had two great ideas. I wanted to create a hospital camouflaged as a dude ranch, run like a vacation resort, for terminally ill patients providing one last positive family memory and a non-profit restaurant chain that could sustain itself financially providing housing, jobs, and food, for the homeless. (Another blog for another day) As most do, I planned the perfect life. For some it's only a dream, but for me it was happening, I worked hard and it looked like nothing was going to stop me. But as what happens with most dreams, reality slaps you upside the head and you snap out of it. Failed heath put the brakes on faster than I ever knew possible.

My father used to say, "If you have your health, you have everything." I never paid attention to that because I was very healthy my whole life until one day in my early 30's that all ended and life became more difficult. I didn't plan well in the event of a medical setback. Who really thinks about that when you're young? My business wasn't set up to run without me and I wasn't smart enough (or too ~~cheap~~ frugal) to put all the insurances in place in the event I lost my income. My father used to also say, "You can be insurance poor if you over insure, so choose wisely." My problem is, I didn't choose much at all. According to the Social Security Administration: "Studies show that just over 1 in 4 of today's 20 year-olds will become disabled before reaching age 67."

There are programs like AFLAC, mortgage disability insurance, and long term disability insurances that are available, but good luck qualifying after you're diagnosed with a severe illness. Fortunately for me I had several business that provided me the income not to worry too much about not having those extra coverages. Although if they were in place, I would not have had to dramatically alter my lifestyle. However, by the time I was 38, it became obvious I was no longer able to continue the fast paced life I was leading, working 16 hour days and wearing several hats in the process. My health was failing and I knew I had to sell everything and downsize in order to survive and maintain a comfortable life. This was a pivotal financial move I had to make or I would have gone into bankruptcy for sure. The dreams of traveling the world came to an end. The hunger to give back and set up a foundation to help those in need sadly vanished as I became one of those in need.

REMEMBERING THE FALLEN

My life now is not at all what I expected or planned for, but I'm alive. When I look at others who lost their life to cancer, I get angry. I truly believe that if I didn't have a team of lawyers and accountants guiding me, access to the best doctors across the country and have the resources to pay them, even with health insurance, I would not be here. I often think of a fellow tongue cancer patient, John who posted here regularly before one day he didn't return my email.

John was a very entertaining fellow. He had a quick wit and a caring soul. He used to make me laugh because he would email me recipes for biscuits and cookies. I would think to myself, "I'm on a feeding tube just like you. What the hell am I supposed to do with a Snickerdoodle recipe?" He was always upbeat even when sharing his darkest fears. He even took the time to share his greatest accomplishments as he battled his enemy. Sometimes we don't appreciate the little things in life, and we take something as simple as swallowing for granted, but to a man that lost his tongue to cancer as John did, it's the greatest feat in the world. Because of my similar journey, I understand. This email from John's shares one of his greatest accomplishments during his battle:

"Is the doctor in?

Well, At 6:15 this AM I was able to swallow water for the first time in over 8 weeks. Now it is only little tiny bits of water. Nothing like what you all can swallow. BUT, I'll take it. for the first time in a long time, my throat feels moistened. When I took some water into my mouth and tilted my head back, I swallowed. I could feel the water go all the way down, from the back of my throat to the bottom of the belly. Man I tell you, the things we all take for granted.

Just thought I would share,
JR"

John was a hard working man, lived in Indiana, did not have a large income, and no savings. He exhausted his insurance and was unable to continue to pay his premiums. He was on a feeding tube and was unable to afford the life sustaining liquid formula he required, the same that I was on for over two years. This canned formula was about $36 a case and he needed a minimum of six cases a month. Typically Medicare (or Medicaid) will pay for this IF you're already on the program. Unfortunately for John, he was already on his feeding tube after his tongue was surgically removed still trying to work his way into the Medicaid system after being rejected once or twice. He waited too long to begin the paperwork and he didn't have the resources to pay the mounting debt he was incurring.

One of his last emails still resonates with me. He was trying to stay in good spirits. John was a real trouper, but he really was scared and financially destitute. He was contemplating hiring a disability attorney to get his Medicaid coverage. Every ounce of his energy was used to hang on to life, he no longer had the energy to battle the paperwork too. When he told me he couldn't afford his formula, I was infuriated. Yes, he should have started the disability paperwork sooner, but when you think you will get better and you're just too exhausted to even worry it, things slide. But there is no reason why a person should have to starve because of paperwork when he obviously qualified for assistance! I was so angry! I sent John four cases of formula and a case of pouches (required to pour the formula into) just to get him by. I never heard from him after that.

One day I got an email from a relative thanking me for my kindness and telling me of John's passing. I never met the man, but I mourned his loss as though he was my brother. I can't even write this without crying because in my mind he didn't have to die.

I carry with me a lot of survivor's remorse. There are so many such people from around the world I have met through this blog and sitting around in hospital waiting rooms who are no longer with us and I ask myself..."What have I done differently to still be breathing?" The standing family joke is...God doesn't want me because he's afraid I'll takeover and reorganize the place! A fair assumption.

Had I not been surrounded by the right people with the resources to afford the level of care I needed, I would be having dinner with John right now. I try so hard to live a good life, to respect the fact that I'm still here for some reason, to make others happy and laugh and give back the very best I can. I love giving small gifts of appreciation just to see others smile. I enjoy engaging in conversation to help others see life from a different perspective in an effort to make them think and become better people. I know I'm so fortunate that I'm still on this rock to do so and yet there just seems to be something missing...a sadness that looms overhead.

I've had a great life even if it didn't work out as planned, but more importantly I still have a life! I only wish there was more I could do. I think I mourn the fact that I will probably never see all that this world has to offer. I have always had a hunger for knowledge and new experiences. Unfortunately, lately those new experiences have been mostly shrouded in the medical arena. Perhaps I'm just bored, maybe a little depressed, and still feeling useless. But it's time to get those projects done before the house falls down around me. Life just keeps getting in the way of me dying!

Peace B

JOHN'S HEAVENLY RECIPES

Snickerdoodles

These cookies will be the perfect slightly crunchy on the outside rim and chewy in the center. I have worked on this recipe for one year off and on. This is exactly how I make them and they turn out every time. It is also less grams of trans fat and can be 0 sugar if using Splenda. How about that...a Cookie that is better for you.

2 3/4 cups all purpose flour
2 tsp cream of tartar plus one half pinch
1 tsp baking soda
1/4 tsp salt
1/2 cup (softened to room temp) Smart Balance 50-50 butter blend ( You could use real butter I think, but DO NOT use margarine. IT WILL NOT WORK!
1/2 cup Crisco butter flavored shortening
1 1/2 cups sugar ( You could substitute Splenda Granular sugar- use same amount)
2 eggs
2 tsp vanilla extract

Cream Butter and shortening
Add eggs, vanilla and mix some more
Add all remaining ingredients except for cream of tartar, mix well, then add the cream of tartar and mix well again. ( It is exactly what I did)
Preheat oven to 375

form into 1.5 inch balls and roll in a cinnamon-sugar mixture.
1/2 cup sugar
6 T cinnamon

Or how ever you like the mixture. Some like more, some like less.

Place on ungreased cookie sheet,flatten a little and bake for exactly 10 minutes. no less than 9 minutes and NO MORE than 10.

Let cool for one minute and scoop cookies onto a cooling rack to finish cooling. ( otherwise the cookie will continue to cook)

(Side note) If you have an idea to just cook for less time to allow for cookie to continue to cook on pan, DON'T. This this will make the cookie cakey. Also use echo bakeware. Do not use air bake pans!

Biscuits

Ok, I know this may sound odd and you may want to substitute or change the way you do this. Do NOT fall into temptation. It may make a biscuit, but it will not make the correct biscuit. So exactly as I say and you will have a most wonderful product.
First tip. Everything must be chilled for 2 hours. We all know that you will have the buttermilk and cream already chilled. Chill the flour and salt and lard as well. THIS IS IMPORTANT STEP! Chill it all for no less than two hours.

2 cups of Gold Medal Self Rising Flour plus (1.5 Tablespoons reserved)
1/2 t of salt
1/2 c of lard YES LARD Shortening will not work. (Read the labels, same amount of fat)
1t of cream of tartar

2/3 c buttermilk
2/3 c half and half

Preheat oven to 475 Spray a pan with cooking spray. I used a cast iron skillet for my pan.

Mix flour and salt together well. Then add lard. crumble with you fingers until crumbles are no larger than pea size. Just rub the lard and flour with your fingers. Do not over mix. (Do not use your hands, they hold heat) Use fingers

Now make a well in the mixture and pour half and half and buttermilk into well. Mix until just mixed, do not over work, you may use hands but be careful not to over mix. The dough will be sticky and wet. Scrape you hands off and use the reserved flour on your hands and a bit into the mixture to fold dough so that you can turn it onto the rolling board. OR as I do.....the counter.

Pat the dough out until about 1 inch thick and cut into biscuits. I used a glass to have nice big ones. Put into pan and bake in oven until golden brown. About 15 min. or so, depends on how your oven is. NO PEAKING, peaking all the time will cause the temp to go down. Use your lite to see how they are doing.
I use an egg wash to get them nice a golden.

1 egg
2 T milk

mix well and brush onto the top when just starting to turn brown.About 10 minutes into the baking process. They will rise well and be light and fluffy.

FUN WITH WARREN BUFFETT... AND COMPANY

noreply@blogger.com (Dr. Swill) — Sun, 23 Jun 2013 16:58:00 +0000

Berkshire Hathaway Rules

Well I've been busy! As my Canserversary approached I planned a weekend getaway to Omaha, Nebraska early May. What better place to celebrate life than the heartland? It was by invitation I was asked to join the Berkshire Hathaway stockholders weekend strictly for fun. I have been given much encouragement throughout the years by Warren Buffett and his loving secretary Debbie Bosanek, whom I adore. They have both been so kind and uplifting throughout my unpleasant journey with cancer .

Warren's first wife Susan, who also had tongue cancer, had been using the same doctors that I started with in San Francisco. This opened communication with Warren and Debbie that has made me realize that there are still a lot of wonderful people left in this world. You just have to find them.

Last year Debbie asked if I'd like to attend the annual meeting and I thought it would be a lot of fun. I was worried if I could make the trip at all. At first I planned to drive and take Dicky, but my doctors didn't think it was a good idea with a biopsy looming. The thought of taking a personal trip kept me on a positive track for months as I looked forward to Debbie's annual dinner party at Piccolos for only the fun people, which turned out to be 100 of her closest friends.

The Ticket To OZ

While on the plane I sat next to a woman named Pat who was accompanying a young high school student, Emma Buchanan, who won a contest to meet Mr. Buffett because of a essay she wrote. She was one of five across the nation to receive the this honor. Emma won the trip through the GENYOUth Foundation Adventure Capital Campaign. Each of the five students won $4,000 for their schools to start programs to educate their communities about healthy eating, exercise, and healthy living. They were so very excited about attending the annual meeting and meeting Mr Buffett.

Mr. Buffett and Emma Buchanan

I arrived two days before the annual meeting to assure I had plenty of energy for the weekend and that I was rested for the private dinner party Friday night. Debbie kept insisting it was only for the "fun" people. So I had to make sure I had my fun on! It was a very diverse group of fun people for sure. I enjoyed the evening immensely!

Warren Buffett discusses business with GENYOUth winners

After the party I went back to a quiet hotel room that the Berkshire office had arranged and found a box of See's Candy on my bed. At the party Debbie had given us a bag of really cool M&Ms imprinted with the likeness of Warren. How cool is that? It was turning out to be a real sweet weekend. The following morning I awoke to a lobby full of cameras and press. There were bright lights and interviews, make-up chairs and camera crews that seemed to show up out of nowhere! It was like someone flicked a switch and there they were LIVE on CNN. Add to that the 40,000 stockholders that filled the arena that morning and I was a bit overwhelmed.

YUM!

The Candy Man Can

I spent 20 years attending conventions and suppliers shows and hearing about company plans and goals for the upcoming year, but I have never seen it done on such a grand scale. This was HUGE and it seemed to go off without a hitch. The entire city of Omaha plans for this event. This is not a weekend for the faint hearted.

I started the morning early. Thankfully the hotel was attached to the venue by catwalk, so I didn't have to walk far or stand out in the cold rainy weather. Once we were allowed in, I made my way to the suppliers show to watch Warren and his pal Bill Gates throw newspapers with a few select people in the crowd. It was a madhouse with even more camera crews and TIGHT security. I couldn't even look Bill's menacing bodyguard in the eyes. He had a very intimidating stance and I usually flinch for no one.

I put $500 down on Crazy Lady in the Third Race

I ran into Pat and Emma from the airplane. Emma was throwing newspapers with Warren and Bill and beaming ear to ear. We walked the suppliers show together with the group of students she was with as they gushed over the exciting meeting with Warren. One young man in the group was 9 years old and already had his own business cards and let Mr. Buffett know that he would make a run for the Presidency in 2060. I have no doubt given this kid's tenacity he will win! I enjoyed their company very much, young, intelligent, productive, and kind with unbelievable communication skills.

It's Mister Bill

We checked out all the suppliers represented by Berkshire Hathaway as some of the students were being interviewed by press. I found it interesting how diverse the company is in its holdings. I know Warren is the stock market genius, but I've never seen him in this light. He's always been just a kind man to me. We've never discussed money or the stock market or even business for that matter. In fact I don't even think he has a clue about my business experience and I find the whole thing rather nice. I'm probably the only person on the planet that feels this way. Though there have been a few times I've wanted to pick up the phone to ask a money question and I stop myself because I don't want to ever be intrusive.

The whole weekend I had a sad feeling tugging at me. I wouldn't even be here if it wasn't for Susan Buffett. There isn't a day that goes by I don't think about Susan and what she went through before she died. She fought hard and survived tongue cancer only to die of a stroke shortly after. So unfair and such a kind hearted woman. We shared a common charity in San Francisco, Glide Memorial Church, though I didn't even know of her at the time. Our paths might have crossed, yet we never met.

I once took our Love Kitchen (a semi decked out with a complete portable pizza kitchen) rigged to feed the homeless and help with emergency situations to Glide and fed over 2,200 people in one afternoon. Gosh, that was almost 25 years ago. It was a very humbling experience and I was educated that afternoon by Reverend Cecil Williams and the never ending stream of the destitute. It taught me that not everyone who lives on the street is a derelict or crazy person. There is a lot of real need and tragedy out there. It helped me realize that giving back to the community is not only necessary, it's emotionally rewarding. But that's another story for another blog.

The LOVE Kitchen

You all know I tend to go off topic a lot here, so I'm sure you're used to it. Now back to the annual meeting... I wanted to sit next to the group of students and their chaperons, but I was told they had to watch the meeting from a conference room in the hotel. So, I was forced to view the spectacle alone. The arena was packed and people were standing in the aisles. I won't go into too much detail because I don't know what I can talk about, but it began with an impressive video showing the GEICO Hump Day Camel commercial that's now on TV. GEICO is one of Berkshire's investments. Then came a lengthy question and answer phase that I kind of zoned out with. Though some of the comments from Warren and Charlie Munger were very entertaining.

I began to realize I was there to see Debbie and Warren and the whole business side of the equation that half the world was there to see disinterested me. I'm not sure why. I've always enjoyed many of the topics discussed. And yes some of the 40,000 in attendance came from all over the globe to hear Warren and his partner Charlie speak their profound financial wisdom. I found some of it interesting, but it was missing some of the meat for me and it was just too crowded to be much fun.

I have a different perception of Warren, I guess because investments have never been a topic. I see him as a kind man, a person with compassion. Though I'm not stupid enough to go head to head with him in business, I certainly would be honored to work along side with him. Respect is a hard thing to come by these days, even harder in business, and even harder yet the longer you're involved in it and Warren's been at it a long time. And this is one man with integrity whom I can respect.

The day after the meeting another one of Berkshire Hathaway's holdings was throwing a stockholders event at a local mall. Borsheims has got to be the finest jewelry store I've ever been in. They brought in suppliers and designers from all over the country for this event and they brought their bling with them. In the mall there was a ping pong table set up and Warren and Bill tried their best against against US Olympian Ariel Hsing.

Later on Warren sold jewelry directly to stockholders with an appointment at crazy discount prices. But don't think he was pushing the cheap stuff. Although I'm sure he'd be glad to sell you the cheap stuff if you paid enough for it. The private room cordoned off with red velvet ropes and heavy security held nothing but the best money could buy. Here is just a sample of what you could pick up for a cool $250,000. This is a Christopher Designs of New York original, with 18 carats of exquisite diamonds. Just the thing to make your honey melt. If you're interested let me know. Maybe I can get you a discount. :)

How to make a woman happy 101

When I look at Warren I see a fun man, young at heart, who in his youth once convinced his friend Kerlin to strip naked on a golf course and fish golf balls out of a pond at midnight. The man who played the Ukulele and sang "Somewhere Over the Rainbow" to put his children to sleep. The man who never left his wife's side as she battled her way through tongue cancer in San Francisco. I hope I see the real man, even though most define him by his monetary accomplishments. That has no interest to me.

Warren encouraged me when I tried out for America's Got Talent with his witty banter that just made me appreciate him even more. Oddly I'm missing the whole mogul side of the equation and I can't put my finger on why. He has a lot of my father's qualities and I guess that makes me feel differently about him. In fact my father made his living as a paperboy on the streets of Detroit as a kid during the depression, so the whole newspaper throwing contest brought back a flood of memories of my dad that weekend. I left Omaha tired and rather sad for a number of reasons...mostly because I miss my dad.

THANK YOU DEBBIE FOR YOUR GENEROUS HOSPITALITY!

Dicky kept reminding me not to forget him. He's not very happy he was left behind...maybe next year.

Peace B

These kids are an inspiration. A video from the GENYOUth weekend in Omaha.

ORAL CANCER CAN BE CAUSED BY ORAL SEX

noreply@blogger.com (Dr. Swill) — Mon, 03 Jun 2013 02:52:00 +0000

"Michael Douglas' Throat Cancer Caused By Oral Sex, Not Smoking Or Drinking"

Michael Douglas' spokesman Allen Burry has released a statement explaining that the actor was just saying that oral sex can cause cancer, not that it necessarily led to his diagnoses. "In a discussion with the newspaper, they talked about the causes of oral cancer, one of which was oral sex, which is noted and has been known for a while now," Burry said.

It's about time someone in a high profile position has the courage to openly address this subject. As embarrassing as the conversation may be, it needs to be discussed, especially with the younger generations.

Without wanting to get too specific, this particular cancer is caused by HPV, which actually comes from cunnilingus," Michael Douglas reveals to the Guardian. He explains that HPV, transmitted through oral sex, was responsible for his throat cancer. This is not a disease that only smokers get. HPV and Oral Sex Facts

TALK ABOUT IT...KEEP THE CONVERSATION GOING.

Peace B

ORAL CANCER - IT'S NOT JUST FOR SMOKERS ANYMORE

noreply@blogger.com (Dr. Swill) — Sun, 19 May 2013 08:12:00 +0000

Oral Cancer and the HPV Connection

I'm an oral cancer survivor that doesn't fit the "normal" oral cancer profile. I'm always asked if I was a smoker. No, I've never smoked, but I was subjected to many years of secondhand smoke as a child. I am not a heavy drinker. More so when I was younger, but even then 2 or 3 drinks a week and now maybe monthly. I haven't knowingly subjected myself to carcinogens, but then there is the debate with plastic water bottles, charred red meats, and microwave foods including popcorn, etc. There could be some possibilities there, but none of those have enough evidence behind them yet. No matter...I don't fit the profile of an oral cancer patient.

After my surgery at MD Anderson, while sitting in a waiting room, a nurse asked if I would answer some questions for a new study they were conducting. It got rather personal as she began to ask about my sex life and "oral" habits. At that time I was told they were conducting studies to show that HPV (Human Papillomavirus) might be the cause of some oral cancers. They were beginning to see a lot of new patients like myself that didn't fit the typical profile. They also noticed that patients were much younger than they normally see.

For years, ever since I learned of the connection with oral cancer to HPV, I have wanted to write a blog especially for younger people and those that participate in oral sex. Let's just estimate...MOST OF THEM! It's something that MUST be talked about, but is such a sensitive subject. How do you explain that if you have oral sex with a person that has the HPV virus and then kiss during lovemaking, that it is possible to transfer the virus to the oral cavity which could lead to oral cancer? And that person might not even know they carry the virus! HUM...I guess I just did...Well then, years of pondering resolved. That wasn't so hard afterall.

When I try to explain it delicately in public, which I try as often as I can...I usually say, "If you play in the basement and then go play in the attic, you can transfer the HPV virus to the oral cavity." OR "If you travel down South and then return to the North..." Occasionally I get the head tilt and I have to give a more graphic explanation.

Even Michael Douglas can't seem to give the full impact as he eludes to it as a "very common virus, one responsible for the vast majority of cervical cancers" that may be responsible, but doesn't touch on how it's transferred. I wish this PSA was shown more often so people can lean. AND I wish people today still didn't have such a hangup about talking to your children about sex when such important life threatening information needs to be passed along. This would be a great time to explain the importance of safe sex practices and the usage of a dental dam.

TALK ABOUT IT PEOPLE!! ORAL SEX + MAKING OUT (could) = ORAL CANCER

GET SCREENED NOW!!

Peace B

LOCKS OF LOVE

noreply@blogger.com (Dr. Swill) — Mon, 06 May 2013 00:11:00 +0000

Splitting Hairs

I have been growing my hair out since last summer to donate it to Locks of Love. Frankly it's been very hard having it get in the way...long stray hairs everywhere. It kept me pretty miserable for many months, but an event came up this last weekend that I wanted to attend. It was time to cut it off and move into a sportier model!

BEFORE

AFTER!

I hope it goes to good use. Please think about growing your hair or if you already have long hair, have it cut for a good cause. Locks of Love is a public non-profit organization that provides hairpieces to financially disadvantaged children in the United States and Canada under age 21 suffering from long-term medical hair loss from any diagnosis.

Peace B

THE ROLLING STONES

noreply@blogger.com (Dr. Swill) — Sun, 14 Apr 2013 06:18:00 +0000

CHIPS OFF THE OLE BLOCK!

A week before my appointment with Dr Otto, the Ear/Nose/Throat doctor at Moffitt Cancer Center I was fighting kidney stones. I've had them before and for many years. Ever since Vicodin was introduced to my medications, the likelihood of noticing them was minimal.

In the past they have always been small and like grains of sand. Still painful to pass, but less noticeable when taking a painkiller regularly for other issues. These were much more intense than my normal stones. Even with the pain medication my lower back flanks felt like I had an elephant sitting on them. A few days earlier I had a massage and had my therapist concentrate in that area thinking it was my standard back pain caused by my compressed lower vertebrae from a long ago fall off a roof. (STOP LAUGHING!) It's actually a pretty funny story that left me with a concussion standing outside in my underwear in a daze...but that's a better story for another day!

A few days after the massage all hell broke loose and the pressure and pain were immense and I had taken my maximum dose of Vicodin. After a conversation with my dietitian who said to drink plenty of water, which I knew, but to also stay way from coffee and tea, something I did not know. Oddly I bought a new Keurig Vue coffee machine for Christmas and had fallen in love with their Southern Sweet Tea. So, I was drinking way more tea than I normally do.

Some of the medications I take require drinking lots of water to avoid these stones, but I have been in a much warmer climate and hydrating is a 24 hour job it seems. To add to that...I really don't like plain water. During our conversation I asked if using a vibrator (NOT THE KIND YOU HAVE IN YOUR NIGHTSTAND!) was a good idea. I have this monster of a handheld programmable heated vibrator that was given to me as a gift. This is not your grandmother's hand vibrator! This is an industrial strength model. I remember when my step-father had stones they dunked him into a vibration tank filled with water...so I thought using this might be a good idea.

The Sharper Image Programmable Vibrator With Deep Heating

As it turned out after wielding the weapon across my back the pain subsided a bit. I shot out a dozen stones over the next few days, more than I had ever seen at one time and figured I was done. Boy was I wrong. The morning of my ENT appointment had arrived with Dr. Otto and I was in so much pain I couldn't even talk without gasping for air as I attempted to cancel and reschedule the important first meeting. We were to discuss my facial issue which by now has been all forgotten as I can only think about giving birth! That afternoon I proudly popped out six little babies...well four little ones and two the likes of which I have never seen come out of my body! AND before any of you ladies chime in with "It can't be as bad as actually giving birth," just remember your vagina is bigger and designed to dilate as one of it's natural functions...my penis is not! Have you seen the size of a Ureter????

Ladies and gentleman, may I present...
MY ROLLING STONES!

In case any of you are wondering how these are retrieved...no I did not go fishing! As part of my mountainous medical arsenal I use a strainer for this very purpose. Like any good Boy Scout/cancer patient/should be a real doctor by now must have on hand, ready for any emergency! DAMN I'M TIRED....GOODNIGHT CRUEL WORLD!

Peace B

CLICK HERE: For The Management of Ureteral Stones

WELCOME TO MOFFITT

noreply@blogger.com (Dr. Swill) — Sat, 13 Apr 2013 22:22:00 +0000

WELCOME TO MY WORLD...

Where to start? I had my first appointment at Moffitt Cancer Center with Dr. Raj. I stayed up the night before my appointment to put together as much of my records as I could copy from my online portal at MD Anderson Cancer Center to satisfy the powers that be. After I had finished at 4 AM I looked on the Moffitt patient website to check my appointment and get directions. I noticed it asked me to fill out a questionnaire before arrival. I figured no big deal until I open the page and it was VERY extensive. It took me almost an hour to complete and by now it was 5 AM and I had to get to bed.

Always entering a new hospital facility can be a daunting experience, but this was a rather pleasant one. When you sign in I was amazed by a really cool device I had never seen before that allows the cancer center to track you anywhere in the building. I call it Lojack for patients. It's no bigger than a wristwatch that attaches to your wrist. It's a WiFi location tracking system made by Ekahau. The best part...You don't have to sign in at every station for each appointment. You only sign in upon arrival and then head to the lobby of you next appointment and sit down and wait to be called. I wish all cancer centers utilized this little device. SO COOL...SO CONVENIENT! I'd love to see the tracking system monitors, how it works up close and also wonder how many people it can track and how far. In fact if I had children I'd find a way to connect this to their cell phones for their own safety. I'm sure that's already been thought of.

Ekahau's Location Tracking System

FIGURING OUT WHAT'S WRONG WITH MY CHEEK

Dr Raj is a very kind doctor who listens to her patients. I was very impressed with her. She went over my history and was rather concerned about a few things that as she went on talking about, made me a little nervous. As she explained I grew ever more silent and all I kept hearing in my brain was, "Oh crap! Oh crap! Oh crap!" That's the PG version for those of you who really know me!

My face has been reconstructed and cut up and things added and taken away. I'm like a patch quilt when it comes to my face. I have issues with scarring and this has apparently led to some pressure on the structure of my face, the bones. I was warned from the very beginning that due to the radiation it would be very dangerous to have any kind for dental work or extractions done without the possibility of repercussions in the future. My jaw could actually shatter if someone unfamiliar with the affects of a radiated jaw bone worked on me. This got me thinking I should probably avoid barroom brawls too! I suspected this because my upper teeth are no longer aligned with my lower teeth, yet the bite of my jaw seems normal. I guess I never realized as the skin healed and began to scar and tighten my face that this could also become a problem. As a cancer patient potentially facing death you don't often look too far into the future...you only hope there is a tomorrow.

This problem could also be a product of how I have learned to chew my food again. After I began eating real food after being on a feeding tube 2 1/2 years I had to learn some new tricks if I wanted to eat some of my favorite foods again. This involved puffing my cheeks up with air to move food around or drinking fluids and using them to swish the food around in my mouth. I don't have a very mobile new forward tongue so this can make it harder to get food where it needs to be just to chew. There are times I still have aspiration problems, but not often, so I have to be very cautious to "think" while I chew which is something that most people don't have to do because it is an innate ability like breathing.

For years all food had to be cut into VERY small pieces and placed by fork to the molar area to chew. Any type of food like a sandwich that you would normally just pick up and shove up to your lips had to be eaten this way. Only recently have I mastered sandwich eating the traditional way with great practice and even then my bites are so small it takes me twice as long to finish.

ANYWAY...after Dr. Raj looked everything over including photos I had taken of the face issue the day it happened she concluded that a facial PET Scan and MRI should be ordered to eliminate the possibility of cancer and something new she brought up based on my facial structure and the scaring.

Ever since surgery in 2007 I have had all kinds of skin issues, sinus trouble, problems with my sight, and even some hearing problems. Some might be age and some repercussions of surgery and radiation. Because this anomaly on my cheek might not be cancer, but something as menacing she brought up something I had never heard of before, CSF - Spinal Cerebrospinal Fluid. Basically a brain fluid leak! GREAT now I'm going to lose with smarts I have left and they are all going to drip out of my nose!

Now here's an opportunity to raise some money on EBay. Let's market this a "Brain Drops" my loss is your gain. With just a few drop you too can become smarter than a 5th grader! What? It would help offset all these medical bills!!!

For the last year my nose tends to run even if I attempt minor household takes and even tends to run when I eat...very inconvenient. I had assumed it was just allergies which I've never had a problem with but if I take Claritin for allergies it seems to help. I NEVER would have suspected CSF! Bit by bit cancer steals everything from a person not matter how strong. Though Dr. Raj prefaced this as "the worse case scenario" I was concerned because I had all the related symptoms. So, she scheduled the scans and an appointment with Dr. Otto an Ear/Nose/Throat doctor after the results are in.

LET THE SCANS BEGIN!

I returned a week later to have my scans. I'm always amazed by the equipment and have enough experience enough now to compare them. My PET CT scans went very well but the MRI is always the worst and it was next on my schedule. It honestly wasn't too bad but I still want to know WHY they all don't let you listen to music during these things. My very first MRI gave me head phones...it was downhill after that and I was already spoiled. Nothing has compared since. The day went like clockwork, not one hiccup...no complaints.

YES, that is my alien head on the computer screen! lol

After a few weeks of wondering how many brain cells I had lost to this potential CSF I met with Dr Raj again to review my scans. Straight to the good news...NO CANCER...Better...NO CSF...HOWEVER...what is the problem with my face????? Only answer so far is a maxillofacial sinus problem. As she explained the small nipple like protrusion could actually be a sinus bone. I don't think so because it's seems like soft tissue unless this bone in similar to the cartilage like we have in out nose.

I asked for copies of the scans so I could post them and even had to fill out paperwork for their release, but so far, weeks later, I have received nothing. SO...now we wait for the ENT to determine what the hell is wrong with my face. Still tired...still in pain...AND STILL BITCHY!

Peace B

WELCOME TO MY WORLD...

SOCIAL MEDIA SAVES THE DAY

noreply@blogger.com (Dr. Swill) — Fri, 22 Mar 2013 04:39:00 +0000

Get it! Get it! Good boy!

This last week I have felt like a dog chasing his tail. My primary care doctor gave me a referral to see Dr. McCaffrey at the H. Lee Moffitt Cancer Center, who is a Professor and Chair of the Head and Neck Department because the issue from my cheek might be cancer related. My doctor was a fellow who studied there and he thought there should be no problem getting me in.

So...I called to book an appointment and the chase began. I was told that they would not book an appointment unless I had an "active" cancer or tests results showing such. I explained that I have been a cancer patient with MD Anderson since 2007 and though I don't know if my cancer is active, I'd like to establish myself with doctors there. Since they would not take me at Moffitt I was told I could book an appointment with Dr. McCaffrey off site at USF. Humm...So I can't see him at Moffitt unless I have active cancer, but I can see him at USF to determine if I have active cancer so he can see me at Moffitt? Get the tail...get the tail...get it!!!

OK book the appointment and the soonest I could get in was April 26. I'm not happy, I'm in pain, and by next month this issue might be healed up. What happened next I could not have ever imagined. Since I use a lot of social media I decide to post my distress on Twitter: "@MoffittNews VERY DISAPPOINTED I am a patient with MD ANDERSON and have a referral from Primary Care and can't get in #gettingtherunaround"

Within hours I received this tweet: "MoffittCancerCenter ‏@MoffittNews @DoctorSwill We're so sorry to hear that. Can you direct message us with your contact info? We'd like to look in to this for you." I send my information and the phone rings with an understanding person taking my information to book my appointment at Moffitt. I was able to book an appointment only a few days away with a different doctor at a satellite Moffitt Center. I didn't have to see Dr. McCaffery, and since I could not see him until late next month, I booked the soonest appointment.

I never, not in a million years, would have dreamed that Twitter had more power than a doctors referral, especially a referral from a doctor who studied at the hospital! GO TWITTER!

The next day the head administrator for Moffitt called me to see if I still needed some assistance. He said it was his day off and there was some communication going around about me and he wanted to make sure it was resolved. I COULD NOT HAVE BEEN MORE IMPRESSED!

I was so grateful and relieved and thought we were done....my bad. When I hung up the phone it dawned on me that the person who booked my appointment for 1:40 PM on March 19 promised to send a verification email and I had not received it yet. So, I called to ask about it and was told they had no record of me...at all.

After some further confusion we start again. Since the 1:40 appointment was given to someone else, I was booked at 2:40 and then I had to give all my information all over again. She said I need to bring my records from MD Anderson. I explained I don't think I can have them in 3 days, I'll do my best. I'm told it's more important to show up for the appointment and the records could be ordered. So... I don't worry. Ahh...we're done right?

WRONG! The phone rings the day before my scheduled appointment and I'm told I can't come in without my records. WHAT? I explained what I was told when the second appointment was booked and again I'm told I cannot be seen without my records in hand. Now I'm pissed.

Back to bitch on Twitter, along with a phone call to the head administrator and here we go again. Get the tail...get it...get it. Round and round we go and the dust clears and I'm told...just come in we'll work it out.

I've heard a lot of great things about Moffitt. A neighbor went there for her breast cancer and was very happy. You all remember Bob Pemberton, my hero, the brave man who with his last breath helped me write the three part - Spotlight On Cancer "Dead Man Talking" leaving a powerful message here on BTGD for all to learn from? He too had great things to say about Moffitt as he battled his own tongue cancer. That was the most powerful thing I think I've ever written here.

I'll reserve my opinion for now. If getting an appointment is this confusing, I'm worried about what is to come. I will say, all but one person I spoke with went way out of their way to help resolve the problems. That in itself is a big plus in my book. There will always be problems, mistakes, and miscommunication, but the proof is how they are resolved in the end.

A HUGE THANK YOU FOR ALL WHO HELPED GET THINGS ON TRACK!

Peace B

Stay tuned for my first H. Lee Moffitt Cancer Center visit and a new battle that might begin!

IT'S OFFICIAL...

noreply@blogger.com (Dr. Swill) — Wed, 06 Mar 2013 10:46:00 +0000

I AM SO TIRED OF DEALING WITH THE AFTERMATH OF CANCER!

For years I have dealt with shrapnel coming out of my neck. If you are a regular here, you've read the posts. It seems that the leftover bits of Doppler wire that was placed in my neck during my surgery in 2007 are being rejected by my body years later. The wire was placed to allow a Doppler ultrasound machine to check the blood flow to the newly placed radial forearm free flap taken from my forearm that was now in my mouth replacing my cancerous severed tongue. This was necessary because if the blood supply stopped the new section of tongue (radial free flap) could die.

When the wire was no longer needed the doctors just yanked it out. I remember thinking how odd that was to just pull. I even questioned the doctor about it. I felt the wire snap and was told that it would heal and any parts remaining would not cause a problem since they were made of a surgical grade material. Well I can tell you that's a load of crap! My neck has NEVER fully healed.

For years and up until last month, SIX years after surgery I still have small bits of wire making their way out of my neck. The first time it happened, I felt it and thought it was a stiff stray hair. (Pulling Hairs) Since most of the hair on my face that was subjected to the radiation field is gone now, I thought I'd just pull it out with tweezers. So...I tugged. One small problem...this little "hair" was lodged in an artery and wasn't a hair at all. It was in fact a left over bit of Doppler wire. When I yanked it out I had a nice stream of bright red blood that shot it's way across the sink and ran down the mirror. The pumping blood looked pretty cool for a moment until I realized the severity of the situation. Well that was a fun night. Last month another small piece made it's way out and once again my poor ravaged neck is beginning to heal.

This all came out of my neck, one piece at a time,over several years

Now if that's not enough...many of you know I have been dealing with an "infection" on my cheek for years. At least that is how it has been treated. Every three or four months for years this bump rears it's head and the doctors throw antibiotics at it and it goes away for a few months. Guess what....IT'S BACK and it's most likely not an infection and probably never was.

Dr. Kim who was at MD Anderson began the antibiotic regime, I can't recall how long ago, but years. And even though I have had countless CT scans and MRI's nothing has been brought to my attention that this might indeed be cancer. It's possible that this could have been a result of all the radiation to the head and neck. I took 60 grays (gy) over a six week period near this area after surgery. (Radiation Dosages)

When this thing rears up it's painful, but now the pain shoots all the way up to the back my eyeball like a bolt of lightning. On my last visit to my new primary care doctor he also prescribed antibiotics. I took the 7 day supply and asked for another week because it still looked puffy.. I think the second was a 10 day supply and he used a different drug in case the "infection" was resistant to what Dr. Kim had prescribed. It seemed to heal up, but a week after finishing the second round the lump was back and this time it popped like a grape. The skin pealed back and I was left with a dangling thing and a very bizarre knotted lump. The dangling thing is still in question, but appears to be a blood clot. It has a vein running in and out with a small sac in the middle. Even more gross is the knotted lump left on my cheek that if touched I feel it at the back of my eyeball.

Blood Clot removed from cheek

Because of my new insurance I can no longer go to MD Anderson since they are "out of network" but I have a few other options. It might just be a lump that grew around the suspected clot (a mass of nerves) or it could be that the cancer has come back. I'm not thinking cancer only because this has been in the process for years and it's not very big. Painful? OH HELL YES!

I'm not expecting this to be serious at all, but I am SO TIRED of fighting. Life doesn't seem to get any better. I know I should be so grateful. I can eat, speak, drink fluids. I've been off the feeding tube for years. I can walk fairly well, my eye sight is good after the cataract surgeries and I have a wonderful puppy to keep me company, but I'm still depressed...tired of fighting...tired of this kind of shit happening and wondering when will it all end.

There comes a time when a survivor must think... I won the big battle, but the little ones keep coming. Is it worth fighting if there is no end in sight? I should be grateful. I am one of the lucky ones. I know this. I've been saved, but what is the real cost and how much can one person take? Sometimes I question the reason for fighting so hard just to have your quality of life drastically diminished. Living seems to come at a great cost...at least to me anyway. Cancer doesn't just attack the flesh, it tears you apart emotionally, gradually beating you into submission.

I'm tired of being in pain. I'm tired of wearing bandages. I'm tired of looking ugly and people staring and asking questions. I'm tired of people saying "I'm sorry." I'm tired of all the drugs. I'm tired of doctors and nurses and needles and tests. I'm tired of coffin like MRI's, CT scans, and X-rays. I'm tired of talking about cancer. I'm tired of people treating me like I know nothing...that I'm just a sick old man. I'm tired of not being happy. I'm tired of not wanting to go out in public because of all the above. I'M JUST SO F'N TIRED!!!

And I'm probably a little bitchy too...

As I finish this post I hear that Valerie Harper has three months to live from terminal brain cancer and once again I am humbled. It sounds like she is taking the news gracefully. The world's Rhoda Morgenstern might not have much longer to live. May she have my kind of luck and be around for a long time.

Hello? HELLO? This is Carlton, your doorman. I just want to let you know there's a ton of people in the lobby that just want to say, "I LOVE YOU RO!"

Peace B

It's Never Easy To Say Goodbye

noreply@blogger.com (Dr. Swill) — Sun, 17 Feb 2013 01:36:00 +0000

As the moon settles to slumber, the sun arrives to begin anew. I yield to yet another anniversary of sorrow. As the passage of time heals the pain, the memories still flourish within the transition.

Peace B

noreply@blogger.com (Dr. Swill) — Thu, 14 Feb 2013 07:33:00 +0000

HORSEY VALENTINES DAY!