Friday, April 25, 2008

Setting the Story Straight

One of the first rules of journalism is that the first rule can change depending on what the editor demands of you for that particular moment. Even through all of the confusion of finding the proper headline to meeting the deadline, one thing remains constant with all good journalists. Journalism thrives on facts. As such, it can be fairly said that the single most important rule is to insure the accuracy of such information being conveyed to the public.

I was approached a week ago to do an interview. I was elated to do so. It was a wonderful opportunity for me to raise the awareness for oral cancer. At first I was put out by the lack of preparation by this young reporter. The interview started off with him asking me to tell a bit about myself. After doing so, he looked at me with a blank stare as if to say, Is that it? We talked about how I first thought there was a problem to how I now choose to use this as an advocacy to raise awareness for Oral Cancer. After an hour and running his tape recorder out twice, I gave him the blog address so he could get all the facts and it could answer questions and give him a better understanding of what I am trying to accomplish. After leaving his office, I felt the story was not going to come out properly. But then I felt perhaps he was just nervous. Perhaps, being young and new, the editor will guide him and assist with a properly written story. I mean, we all have to learn our craft at some point.

When the story was released I was at first impressed. They had a nice 4x3 block on the top of the front page with a nice tag line directing you to the main story. And the story that was written was nice. Unfortunately it was not accurate.There were many misquotes and facts that were either in the wrong order of events or just flat wrong.I did not seek the advice of a EMT who suspected cancer, It was an ENT. The oral surgeon ( who was great by the way) did not advise me to have a radical surgery that the paper spoke of. It was the second ENT that I was referred to. The list goes on and on. Reverting back to the original point of journalism relying of facts.

They failed this story on two counts.
First they failed to report the facts properly. The second and most important of the two, the main focus was not to be a man who had cancer. It was to be, how a man with cancer turns a negative into a positive to help others by raising awareness. It is about setting an example of strength and courage. I suppose had they profiled the man rather than the disease, and done the homework, all would have turned out better than I had expected.

One quote they got right is what I shall leave you with today."The most important thing is being your own advocate and find out what is best for you." I will further add, " Doctors can only present their recommendation for treatment based on their experiences. You must gather all information from all sources available including other types of Doctors and decide what the best treatment is for you."

Thursday, April 24, 2008

What IS a Survivor ?

Many have said, " How can you be a survivor if you are still going through treatments?" "How can you be a survivor if you have not been told you are cured?" Please allow me to explain!

First off, let us see what Webster has to say. The actual meaning is as follows. Root word is survive.

The intransitive verb of that word means:
1 : to remain alive or in existence : live on
2 : to continue to function or prosper

The transitive verb means:
1 : to remain alive after the death of (he is survived by his wife)
2 : to continue to exist or live after (survived the earthquake)
3 : to continue to function or prosper despite(they survived many hardships)

Survivor is a noun. So, to be a survivor we must have remained alive and continue to exist and function despite any hardships such as a disease like cancer.

I have Oral Cancer, I am alive and continue to function despite it. I may not function to my fullest potential, but I still function. No where does it say we have to have been cured before we can be deemed a survivor. This as many words in our language, have been misconstrued to have other meanings due to how we may use them in a sentence. Because of that structure we assume the meaning of a word without even looking to see if it was used correctly. I am just as guilty of this as anyone. That does not make it right. But, we are all human.

So what is a Healthy Survivor? That is simple. Dr. Wendy Harpham explains this the best.

Healthy Survivor: A survivor who gets good care and lives as fully as possible is a Healthy Survivor. Wendy S. Harpham, MD

And that folks is exactly what I do. It does not matter how much time has elapsed. It can be 1 hour, 1 month or 20 years past your diagnosis. You have survived not matter what that time factor may be.

Any time of survival, especially Healthy Survival is important, crucial and a gift.

Monday, April 21, 2008

Just having a Darn Good Day

Most of the posts have a deep meaningful purpose. Many times they are not written with that intention, but do impact someone somewhere along the line. This time, I keep things light-hearted. I am just having a darn good day. Actually the whole weekend went pretty well. Saturday started out kind of crappy. By the evening I was feeling better. I went to Wally World to get the food for the week. I dared to get a big ol fat steak. I had managed to eat a whole piece of pizza earlier that day. I would have eaten more if my dentures had not been slipping. Darn things anyhow. Have I mentioned I hate those darn things?

I got up Sunday and felt even better. I went out to eat and did a bit of window shopping at my local Sam’s Club. (That is two plugs they owe me for.) And then later on that evening I dared to fix the one dinner I had longed for. I had longed for two things since this whole mess started, to eat pizza and eat steak. Things I have not been able to eat since December. My diet has mostly been of the soft food variety, soups, broth, gravy and the like.

So, I had already prepared for it earlier. My dentures were adhered with triple the amount of Fixident. They are not going anywhere. I Had a heck of a time taking them out that night. I seasoned that bad boy up. Cook it to a perfect Medium Rare. Got myself a drink, sat in my chair with a fork in one hand and knife in the other. I patiently cut my first bite with much anticipation. As it entered, my mouth experienced a most seasonalistic orgasm। YES, It was the best bite I had in MONTHS. I sat like a kid eating candy for the first time. Cutting and enjoying every tantalizing bite. It did take a while; big bites hurt my gums some. I had to cut small bites and chew carefully. I still enjoyed every last morsel of food. Right down to the last bit of juice left on the plate.

Yes, it most certainly was a GREAT DAY!

Friday, April 18, 2008

The Thought of Death

Recently I have had people ask me some difficult questions relating my Oral Cancer to death. At first I was offended. Then I was upset. Then I thought, they just do not get it! So, rather than getting upset, I am going to use this as an opportunity to educate! This is my take on the subject and how I personally feel.

Death! This has been a topic for discussion since man has been on the face of the earth. I think we all can imagine what dieing is like. But we all want to know the big secret that lies behind after death. Is there life after death? Because of this big unknown, there are those of us that are afraid of death. Are we going to a place like Heaven, a glorious place that God has promised us? The Bible says that He has prepared a room for us. We only await His calling. I have spoken to people who say they can not wait to go to Heaven. They not only embrace the idea, but long for it.

Then the question remains........are we good enough to go to Heaven? Or are we going to Hell. I am not going to take that topic any further. I will just say that it is the other side of the coin that enters ones mind. In my belief Hell is very real. So, ya better be good!

But what about those who do not have a faith? What about those who believe in a Superior Being but is not sure who or what that is? What about those who believe in evolution? What about those who have no belief one way or another? The fact and the validity of the questions asked still remains the same.

Does your cancer make you think about death?

Do you think you are going to die from the cancer?

How does that make you feel?

How does this affect your life?

Are you ready for some very honest answers? I hope so!

I have thought about death many times in my life. When I go to a funeral. When I have too much time to think. You know, those times that you have alone and you constantly think of all those weird and funny things that you would not otherwise be thinking of. And yes I have questioned the validity of all these things and why we even exist. And how can I validate my own existence.

But does having Cancer make me think of death? DAAA! You are darn right it does! Heck I thought of death before Cancer! What the heck would make you think I would not think of it now? FOR GOODNESS SAKE! Get a grip man.

Do I think I will die from the Cancer? I do not know. If I knew that.......I would be God. What are you going to die from? Can the cancer accelerate my death? Sure, but I can just as easily be hit by a drunk driver today as to die from cancer. NO ONE REALLY KNOWS!

How does it make me feel? Well, it kinda bums me out. But it also makes me understand and really appreciate the things in life that you all forget about. I look at the dew upon the grass in a different way. I see the ripples in the pond, I look at the smile of one who gazes at me, I embrace and hold true to all the gifts of the world that has been given to me. And THAT, makes me feel GREAT!

And the last question.........How does it affect your life? I think that it has made it much better than it ever was before.

So, here is what you all need to understand if you have not already figured it out.

Death is a part of life. We all know that. We all have our own beliefs and ideas on life after death. But cancer does not make me think of death as the forefront of my life! It is not the center of my attention. This is only part of the stigma attached to the word, "CANCER". This is the lack of understanding that you all think of and wonder about. If you all wondered every day what and why and how you were to die, you would be miserable. And more than likely die way before your time.

Yep, I have Chemo and Radiation to go through. The pain is there from the cancer. And yes it all SUCKS! But you know what, you more than likely think going to work every day sucks. Hearing your kids scream may suck. Getting a speeding ticket sucks. But this is what we call life. No one said life was easy. We all have things to deal with. It is what you make of life that matters.

Cancer is not a characteristic of my life or my family। It is just a part of it. I have been given a gift you have not. I can embrace and relish in every waking moment of what life has to offer and not take anything for granted. Anything from the guy who waves at me with only one of five fingers showing for going the speed limit to the wind rustling through the trees as the fish swim by creating the soft ripples in the pond.


Tuesday, April 15, 2008

Getting the Word out about Oral Cancer

Well, I have a lot to report today. My first big exciting news is, that a small south side paper had contacted me today. It is called the South Side Times. They want to do a feature article on yours truly. PRETTY darn cool, is it not? They wish to do a feature on me. They called me and asked if I would be interested and I said, Of Course I would be. What an opportunity to get the word out about Oral Cancer. My interview in tomorrow at 3:00PM.

That brings me to my second bit of news. My sister has taken it upon herself to do a benefit dinner for me to help raise money for things like the uninsured medical bills and such. Since not working it has become a bit of a burden, but as always, I work through somehow the money just comes. ( Lord provides.) But she will be having a dinner this Friday a the Masonic Lodge between 4:30 and 7:30 PM to raise a bit of cash. I think this is very cool of her. Some times being my sister she is a bit of a pain in the rear. Always wanting to mother me and treat me like a big ol' baby. But beside that , she means well and has really gone all out and made this happen. Kinda cool too I think. Money is not the real issue it is more the thought behind it all. Guess it will be a spaghetti dinner with salad, French bread, chocolate cake and a drink all for $5.00. What a DEAL! This day and age a meal for $5.00, WOW! I guess the paper will be there also as part of the story.

I wanted the chance and now I am getting it. Come on Bob and Tom! or Heck, what about Regis or Oprah. Maybe a bit ambitious, but...why not? I will be amazed at that one I think.

Chemo went well this last Monday. I have gotten the Acne rash that was promised to me. Bringing back the old high school, teenage years. Only difference is you do not have to duck when I yarn. The pimples are not filled with that nasty stuff.. reminds me of water. But I bought some Oil-Free Acne Wash, a Foaming Cleanser by Neutrogena and it works well. I use it in place of soap twice a day and it helps dry it out. So there is my free plug for them. Now if Neutrogena Corporation wants to send me a dollar I would not turn it down. Or maybe some free bottles, oh... only 4.85 at your local Walmart. I do have some slight muscle soreness from the Erbitux, but that is not all the time so I can deal with that. I have a bit of rash, on the chest as well, but not bad, least not yet. The Erbitux is working though. It has reduced the tumors some. It has caused swelling in others. This is because the Her 1 pathway is blocked and the cancer cell can not grow so the agitates the cells around it hence causing some inflammation. This will go away after radiation starts.They are currently mapping out my treatment for the radiation. This will take about another week or so, then they will call me to start that. Then is 8 short weeks, I will be done. Ya, I make sound simple. I know I am in for a ride, but once you get on the roller coaster, you got to finish the ride to get off of it.

Finally, I toot of my own horn. I have officially been smoke free now for 3 weeks almost 4. I mean 100% smoke free and with no patch either. I was on some pain meds after the last surgery, that made it easier not to smoke. Plus I was in such horrid pain, that I did not care about smoking or anything else either. But now that I have not smoked even a puff of a stub since then, It gets tough. Not a day goes by that I want one. Even now as I think about it, I want one....BADLY. I just don't! Having a portion or your throat cut out and your teeth extracted and jaw line ground down is a good motivator as well. Would not suggest going through that though. Do as I say, not as I do. Do not smoke and get checked for oral cancer! Ya, I never though it would happen to me either!

Saturday, April 12, 2008

Making a Difference

During the last few months of posting entries into my blog, I have made a few friends. They all have cancer in one way or another. Some have Head and Neck like I do. Some have Breast Cancer and some have Lymphoma. Some have had Cancer since age 3 and are now having babies. Some have only had it for a year or less and have days when the struggle with what life with cancer has to offer. can trouble them. Then there are the days when the sun is out, it is a warm spring day, the smell of fresh cut grass is abounding. Life could not be any better!

These people have really been my best source of help to me. Yes, my family, friends and those who are close to me have really been there as well. I am not short changing anyone. But to really talk with someone who has been or is currently helps the healing process that much more. These are the people who are within the realm of total understanding. Everyone else can sympathize but to really understand, you have to be there. You had to have gone through it. It is these people whom I have grown to not only respect, but to appreciate as well. It is without their knowing, the correspondence has been most helpful.

It is this very reason that I feel so compelled to get this story out. I want to travel to every city in every state and tell my story. Inform people of how they can prevent oral cancer from occurring or how they can deal with it in a most positive way. Like any cancer, early detection is key! It is key to any possibility to a cure. It is key to a successful long term remission. Oh ya, all this can happen without early detection, but why not increase your chances if you can? Are you starting to see why I am getting so compelled? There is so much information that begs for an audience.

People say I should write a book. Never thought of myself as a writer. I just blog about what happens and how I may feel for that day. I guess it is becoming a lot more than that. Amazing I think. One day I am writing a note so the family out of town can see how I am doing, the next month I get emails from total strangers about how much of an inspiration I was to them. WHODATHUNKIT?

As I get the emails on a weekly basis now, I realize even more. that there are so many people who need to hear it from those in the trenches. Not only those with the cancer, but the caregivers as well. They want to know how they can best help the loved ones afflicted. I answer each of these carefully. It really depends on the personality of the person at that time. Heck, I can change like the wind without a moments notice. One minute I am Mr. Happy Go Lucky and the next, I am Mr. MAD AT THE WORLD! Do not mean to, but it happens. Though I will say, mostly, I control it and keep it to myself. OK, I try to!

So my goal is to make a difference. To share with others of the experiences which are vital. I would feel blessed to go to churches and share how cancer has sparked a new found faith. It would be an honor to speak to newly found Doctors at universities who need to know how they can best help their patients. What I would enjoy the most, it to help others understand what Oral Cancer is about, how they can detect it and how to deal with the cancer once it does occur. To be able to impact someones life in a positive manner. To give back what has been unselfishly, given to me!

Thursday, April 10, 2008

Pre Radiation Treatment

The mask is what holds the head and neck area in the same place every time Radiation is done. After mapping out on the computer for a week and a half, they need to insure that the work was not wasted. You must be in the exact same position every time. It would not be prudent to radiate the tongue one time and the spinal cord the next with the same beam. So as horrible as it looks, it is a needed part of the treatment. And it really is not that bad anyway.
The outer rim of the mask snaps down to the table and holds you in place. Yep, It is snug alright. Barely enough room to swallow. But it works. I can breathe and see, what else matters? Today I had a contrast done. This is a cat scan with iodine infused via IV so that is kinda lites up what they need to see. This way they can further map out what needs to be radiated and at what strengths. So as the meds work into the system you get pretty warm indeed. For some reason your posterior end seems to warm up fast and with intensity. Almost to the point of being on fire. ( maybe a tad bit imaginary, but you do get very warm in that area.)

Having the mask made was no biggie. It is a fine mesh plastic that is warmed up and placed on your head and formed to your face. In 4-5 minutes, you are done. The hard part is up to the techs that map out the treatment. If you do your part and hold still, they do their part and map out the beams and particles of beams properly, combine that with proper Chemo, and they should kill the cancer in 8 weeks. At least that is the idea of it all. Certainly what I hope for! Kinda not looking forward to all the side effects of radiation nor the current side affects of the chemo, but in 12 weeks or less, it will all be over, and I should be cancer free. Again, in theory. Then it is a mere wait for the next five years. Five years of testing to see if it come back. Five years of wondering. And as each year passes and I get a clean bill of health, it will be one more time I can laugh in the face of cancer. I can fly the flag of survivorship.

Wednesday, April 9, 2008

Kudos to the Doctors

I have to tell you all. I would have rather not had the cancer. But since I do, I have to say, I have been very blessed by the Doctors that I have had. They all have gone above and beyond what it deemed normal patient care, in order to insure my best possible outcome. Because of that, I would like to give them each the credit due!

Dr. Tharp and Dr. Loesch of the Central Indiana Cancer Centers. They both are very knowledgeable in their field and have left no stone unturned. They have gone through all the pros and cons of treatment and have made me feel very comfortable with the treatment I have received. The staff at the center is also to be acknowledged. The treat you like family. They will get you a pillow, a blanket, a cup of coffee or a snack if you like. They do what ever is needed to insure you are comfortable.

Dr. Tom Quill DDS, this man has bent over backwards for me. Normally it takes 6 weeks to make a pair of dentures. He worked on days off and into the night to make them in one week so that when I come out of surgery I had teeth. As a Dentist, my daughter has a BAD case of the scaredycats. He made her very comfortable and she has had two fillings done by him and was ok with it all. She likes him very much.

Dr. Phillip Montefalco DDS-Oral Surgeon, Very professional and knows his job well! He also bent over backwards to make this all happen. With out his help, my surgery would not have been. I needed my teeth out, radiation would have killed them off and presented more issues down the road. I had lot of disease and gums receded and I was just a mess. Dr. Montefalco realized the seriousness of it all and simply made it all happen.

Each of these Doctors and their staff is really unsurpassed comparatively and deserve to be recognized as such. To all of you who have been so nice and professional to insure my best care, I say from the bottom of my heart, Thank You!


John Resner

Thursday, April 3, 2008

Coping with CANCER

In the midst of cancer, one may suffer times of anxiety, depression and fear. You become anxious about the uncertainty of what is to come. You feel sorry for yourself. You may even suffer a bit of self pity. Then you certainly have the fear of death. The BIG C! This is where the stigma resides. Cancer.... disease that has no cure. Truth is, there are a lot of diseases and disorders that are not with in the means of a cure. Some bring death, some do not. I tell you of this for two reasons.

The first is a simple and short reason. Through the coarse of this blog, some have questioned why I do not seem to suffer from any of the above mentioned. Let me tell you, I do. On a "BAD DAY", I suffer with all of them and maybe some more not mentioned. I have been at the lowest of lows and have come to understand why DR. K has been employed to perform his services. Not that I condone these actions, but can understand the mindset of those afflicted. But here is the difference, I do not allow it to run my life. To allow such a thing would be allowing the cancer to control what is to be. I am in control and shall continue to be so. I tell it what I am going to allow! I say when the fight is over! Oh I may have plenty of battles, but I shall win the war! God has given each of us a wonderful gift. A gift we all to often take for granted. The gift of free will. It is this free will that allows us to control either in full or part what is to be. It is this will I utilize to control the final outcome.

The second is brought about by a recent life experience. My grandma of 95 years recently passed away. She had a great full life packed with kindness, adventure, good will and meaning. Though many will accuse me of being partial, she truly was the definition of what a perfect example of a human being should be. She lived her life by helping others. She never had a bad word to say about anyone. No matter how they may have been, she always had a kind word. The Justice Department could have modeled her disciplinary measures. Her actions which were always swift, fair and just. If you got in trouble by Grandma, she never told your parents. She did not believe in double jeopardy, nor did she try to open your case again after it was lost due to a lack of evidence. I think her secret was using the very definition of the word discipline. The root word is disciple which means to teach. She taught right from wrong rather than just to punish. I could go on for pages and pages about how much my grandma meant to me. I am sure that each of the children, grandchildren and great grandchildren, friends and other family members could do the same. She touch lives with no matter whom she came in contact with.

Here is the final point. Even through all the horrible things that occur with cancer, life continues. People pass on. Your children continue to need you. They continue to need your praise and share your life experiences. Your family members and friends continue to be a part of your life and want you to be a valid part of their life. There is a fantastic life going on all around you. It is ok to feel all the feelings you have. It is natural and is actually part of the healing process. But do not allow yourself to fall too far beneath the epidemy of your cancer to disallow what can be so wonderful and fantastic. As with anything else in life you must find your balance and use your free will to endure and embrace the challenges of life so that it does not pass you by.