HAPPY THANKSGIVING!

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

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?

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

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.

©2009 Brian N. Walin (All rights reserved)

LINKS: PART 2 - PART 3

I've Met My Match

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

LIFE KEEPS GETTING IN THE WAY OF ME DYING!

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. 

ORAL CANCER CAN BE CAUSED BY ORAL SEX

 "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

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