Health Update

Veronica took some recent photos of my mouth while we were on our vacation. I thought that my mouth and tongue medical issues would be a problem while we were on vacation. As it turned out my tongue and mouth actually cleared up some and most of the pain that I was experiencing went away. I am starting back up on my secret medicinal weapon plan. I still have 5 out of the 6 weeks left to do on this plan. I had decided to do 1 week prior to leaving on our vacation.
Here are some of the most recent photos taken:

Last Medical Update Until After Our Vacation

I decided to do this one last medical update before we left for our cruise. I would like to be able to sweep all of this under the rug or shove it into a dark remote spot in a closet for a while so that Veronica and I can enjoy the build up to our cruise and and the vacation itself, without having this dark cloud always hanging around spoiling every moment we have.
So after this blog entry there will be no more talk about or thoughts about mouth sores and the "C"
word...at least until the end of October.
Actually my tongue has been feeling somewhat better. Not as much pain and on some days it actually looks better but by looking at the photos...damn if it looks any better. I guess "some days" were the operative words.
I can almost bet the farm that all of this stuff will still be waiting for me when I return from our vacation. But from this moment until I get back home...I am 35 years old again....healthy as an ox and as handsome and studly (according to Veronica) as George Clooney.....yeah I can hear you now.....damn that must be some really good shit he's got himself into!!!...and then there is the fact that Veronicas' sight is not what it used to be either.
Well...... what did you expect....re-runs of old road runner cartoons...beeep beeep!!

The following photos were taken on 10/7/2013. You will notice a new development on the top of my tongue that just developed yesterday

Now We Start Throwing The Kitchen Sink At My Tongue

I got my secret medicinal weapon in the other day. Based on the speed at which things have developed for the worse in my mouth, I decided to go ahead and start using the latest weapon in my arsenal. My fist dosage was last night. I will provide the details of this weapon at a later date but for now I will detail whether it appears that this weapon is working or not.
I will use it for the next 10 days, including last nights use. This will take me up to the night before we leave for vacation. I will then start back up again as soon as we return home. 5 weeks after that I should have an idea whether this weapon is working or not.
Below are the latest photos of my tongue and the dates the photos were taken:

Taken on 9/26/2013

Taken 9/27/2013 

Taken 9/29/2013

Throwing Everything But The Kitchen Sink At My Tongue

I am currently throwing my whole medicinal arsenal at my tongue. Unfortunately I haven't been able to fire my big guns at it and I won't be able to until we return from our upcoming vacation. What I have thrown at it has been enough to lower the pain level but hasn't done too much to change the outward appearance of the sores and all of the other stuff in my mouth and on my tongue. It is possible that what I am taking could be bringing all of this nasty looking stuff up to the surface...I just am not sure. No matter what medicinal bombs I throw at this monster, it is going to take some time to have an impact on it.
Below are 3 photos of my tongue over the course of several days. These photos do not show what is going on further back in my mouth nor further back on my tongue:

 Taken on 9/12/2013

Taken on 9/20/2013

Taken on 9/24/2013

How Many Times Have You Told Yourself....This Only Happens To Other People

C'mon...let's not bullshit each other. If you are like me you have probably thought it plenty of times...maybe not said it aloud but thought it to yourself before moving on to something much more important like your favorite football team playing in HD on television in 5 minutes.
Yeah I know that scenario all to well..but guess what....it can and did happen to me. In the snap of the fingers or the blink of an eye...I swallowed and my tongue hurt. And that my friends was the beginning. It came without an invite and stayed way beyond last call.
If it can happen to me...it can happen to you.  Approximately 42,000 people in the US will be newly diagnosed with oral cancer in 2013.
I have decided to write in detail about this next journey. It will be on how I am doing and feeling as I walk into the ring and do battle against oral cancer. My story starts off a little different to begin with just for the fact that I have Mast Cell Disease in my bone marrow which causes me to have a compromised immune system to begin with.
I should make it very clear that I have not been officially diagnosed with oral cancer as of yet but based on my lengthy history of smoking...32 plus years...smoke free for approx 7-8  years and medical history leukoplakia, myoplasia and 2 tongue biopsies along with what is currently going on in my mouth, on my tongue and throat...I am getting real close to obtaining that official diagnosis.
The Oncologist that I see for my Mast Cell Disease has referred me to one of the best ENTs that has experience with oral cancer patients. My first appointment with this specialist is on November 5th.
I do not plan on conforming to strictly mainstream medicine to cure me and I have already started utilizing "alternative medicines".
For anyone that has any type of disease whether it be cancer to seizures, arthritis to diabetes, it is in your best interest to look into some of the alternative medicines that are out there.  For those who are interested, do a Google search for High Level CBDs, Cannabinoids and Cannabidiol. I also watched several documentaries on television about Medical Marijuana, Hemp/Hemp Oil Products, High Level CBD products. It was/is truly amazing  what these products appear to be able to do on a medicinal/healing level
I started taking the following item in hopes that it would help my current medical situation out... CanChewGum
I have been using the gum for a week and started using before most people probably would but I wanted to get a good jump on beating this thing.
What I have noticed is that whatever is going on in my mouth and on my tongue, it is happening rather quickly. One day something isn't there and the next day it is and the next day it looks completely different.
Veronica and I are beginning to wonder if the CBDs in the gum are forcing the bad stuff on/in my tongue to the surface thus making it look real bad overnight and then it subsides a bit the next day. Like I said....everything looks and changes very quickly.
Now how has all of this had on my mental and emotional state...well...this all came upon me really rather quickly. There are times that I find myself very sad, angry, depressed and then at other times it is just another day at the office . So my feelings are all over the place.
And then on the other side of the coin, I am still working on the finishing touches for our upcoming cruise.
So I guess what they say is true...life does go on.
I will post some internal mouth and tongue photos later.

Not Just Another Day At The Doctors Office

Today Veronica and I drove to Virginia Beach to see my Oncologist. I wasn't supposed to see him until December but because of all of the mouth issues that I had been and are currently having, we decided that it would be best to talk to him and get his professional thoughts and opinions about what is going on.
After going over the recent medical history involving my mouth issues and then taking a look into my mouth, my doctor stated that what was going on had nothing to do with my Mast Cell Disease.
In my words not his....my mouth is basically a pre-cancerous petri dish basically waiting its time to turn into a full blown case of cancer.
My doctor told me about a couple of things that I could do that might keep the BIG C at bay for a while. He mentioned something about freeze drying dark berries and rubbing them as a paste around my mouth...basically using berries as an antioxidant.
I did not tell my doctor that I had already done a little research on my own and was looking into possibly utilizing some "alternative medicines",
My Oncologist suggested that I go to a Eye, Nose and Throat doctor that has had  plenty of background, hands on and surgical experience dealing with patients that have Oral Cancer. He referred me to one of the top ENT cancer doctors in the area. I was lucky enough to get an appointment with this doctor shortly after Veronica and I return from our upcoming Med cruise.
Until then I will have to deal with the pain that I have in the right side of my mouth, tongue and ear. Hopefully it will subside a bit until we get back from our cruise.

I Must Be Stuck On Some Type Of Perpetual Re-Run Play Cycle

Things occur frequently enough that I lose track of time, so please forgive me if my accuracy is off a bit. About 3-4 weeks ago I developed some soreness in the right side of my tongue, ear and neck. This is the same side that I had originally had my very first biopsy and followup surgery on approximately 6-7 years ago when I first discovered that I had Leukoplakia on my tongue. Soon after the soreness started and after looking around in my mouth, we found what appeared to be some sort of cut further back on the right side of my tongue. The next day the pain had got worse and the sore now appeared to be looking almost like a boil with a white center. By this time I was gargling with salt water....not knowing what else to do. I immediately made an appointment with my ENT doctor and we went to see him the next day. When I went in to see the doctor, the sore was almost gone except for some redness but the pain was still present. I went out to the car and got my camera and showed the doctor what the sore had looked like the day before. He was very surprised and the huge difference between what he was seeing in the camera and what was in front of him at this time.
Because the sore appeared to be going away on its own, my doctor decided to give it a few days and then return to see if the sore and the pain had completely disappeared.
So after returning home I decided to continue gargling with the salt water and I also started using some hydrogen peroxide on the sore and surrounding area.
Over the next few days, I found that the sore came back to some extent and that I felt really wiped out by afternoon. I mean I was really dragging and was not really hungry or eating much. It was during this time frame that I had watched a couple of shows that we had taped that dealt with "alternative medicines". Besides dealing with my ongoing bouts of mouth issues that have already included two biopsies, I also have Mast Cell Disease in my Bone Marrow along with having to be careful on watching what I eat and my weight because Diabetes runs in my family. Of course there is the laundry list of other mundane issues that are a pain on a daily basis...arthritis, torn meniscus in my knee.....
I decided that I would give one of these legal alternative medicines a try to see of it would help my situation..... CanChewGum.
Yesterday I got my gum in and started to use that and I also returned to my ENT. My ENT used a scope device that he put up my nose in order to look down in the back of my tongue, throat and voice box. This procedure was not one that I was looking forward to at all. It turned out not to be as bad as I was expecting but not anything that I would stand in line to have done again. Nothing dramatic was seen through this scope device other than a little redness on the back side of my tongue.
The doctor decided that we would try to take care of the sore by using an antibiotic and if this did not work then another biopsy would be in order.
If we end up doing another biopsy it would be a rough one due to the location of the sore. It is further back on my tongue compared to the other last two biopsies.
I have to go back in about 10 days to see if the antibiotics worked or not. I am hoping that between the gum, gargling with salt water, hydrogen peroxide and the antibiotics that we can get rid of this sore.
This Thursday we go to see my Oncologist to get his thoughts about this sore and to see if my Mast Cell Disease has anything to do with all of these sores and mouth issues.
Keeping my fingers crossed that goods things will happen over the next 7-10 days.

My Journey Continues

I am back again. I went for a walk. This is something that I have been doing for several years. I go for a walk in the morning and another in the afternoon, depending on how much energy I have. I take what my body gives me. I tend to push it though...even when it is in the 90s. I probably walk anywhere between 4-5 miles a day between the two walks. Helps me keep my weight down.
Let's see...where was I. Oh, yes..yesterday I went back to the oral surgeon to get the results of my tongue biopsy. What I got was not what I was expecting. What I ended up having is Epithelial Dysplasia along with increased mitotic activity. Here is are links for more info... http://www.maxillofacialcenter.com/precancerDysplasia.html
http://www.phoenix5.org/glossary/mitotic_activity.html
There is also mention of parabasilar hyperplasia and cellular disorientation. It goes on to say that "because dysplasia and carcinoma can occur simultaneously, all lesions diagnosed as dysplasia must eith be removed or monitored with care". So what does all of this mumbo jumbo mean???...well after doing a little research on the ole computer, it means that there are some changes going on with the cells that aren't normal and that if left untreated, could develop into cancer. Luckily, the dysplasia that I have is considered "mild" at this time. That is the "good" news. Now the bad news is that one of the options to get rid of the dysplasia is to have it removed...cut or scraped..whichever terminology you would like to use. Exactly what I don't want to go through again, excopt this time lots worse because of the amount of tongue that they would have to remove. Granted they would not be actually cutting my tongue out but they would be cutting a nice portion of the lower right side of my "licker". The oral surgeon told me that he would removed all of the "bad" areas and then fold the two edges of my tongue together and then suture it. Not something that I would look foward to and my imagination allows me to have a very scary visual of this process. The oral surgeon strongly suggested that I get this done as soon as possible and to wait no longer than the end of this year to do it. Damn, damn, damn....just what I did not want to hear. I sat there listening to each and every word that the oral surgeon had to say. It was really kind of strange and surreal hearing him tell me what I had and what needed to be done. I left there in kind of a shock..a mental numbness, thinking that this can't be real. Obviously someone made a mistake and mixed my slab of tongue up with someone elses slab of tongue. I went home dazed. Once I got home I kept reviewing the piece of paper that the findings were written on. I checked to make sure that I had read it correctly on the third and fourth reading...that it was my name on the report...my date of birth...yes it was me on all counts. I just turned 53 this last June. Way too young to die or to be dealing with something like this. I have too many things that I want to do, too many places that I want to go to...all of these things to share with Veronica. It just can't be...it is someones idea of a really bad joke. I guess it would be proper to mention at this time, what I would call a "public service announcement"...I have always heard stories about people getting sick, getting cancer or some other disease and thinking that it will never happen to me or I am too young for that. I think that if you look inside of yourself honestly, you would have to admit that you have told yourself the same thing. I think that we all have. The unfortunate thing is that it can happen to any one of us, at any time and that there is no rhyme or reason to who it happens to. Then I keep telling myself that if only I had really tried harder to quit smoking even a month sooner..it might have made a difference as to whether I would have got the dysplasia or not. Who knows. After going through everything in my mind, I decided to call Dr. Cross. Dr. Cross is someone that I trust very much. He is an Oncologist that I see for another disease that I have been dealing with...Mast Cell Disease. I was diagnosed with this about 4-5 years ago. There are a couple of types of this disease and mine is the type that is in my bone marrow. It is not considered cancer ansd it is kind of hard to explain. Here is a link that can provide more info on the subject: http://www.tmsforacure.org/patientinfo.shtml
Dr. Cross works at the Virginia Oncology Associates at the Cancer Center that is about 20 minutes from here. I was very lucky to have found Dr. Cross. This Mast Cell Disease is rather rare and not too many doctors have had any experience dealing with patients that have this disease. Luckily, Dr. Cross has. I made an appointment for tomorrow morning to see Dr. Cross and discuss the results of my biopsy with him and to find out if there are any alternative treatments besides cutting out the bad area of my tongue. I will let everyone know how that visit turns out.
Also, after getting home, I thought long and hard whether to even mention any of this to Veronica. I was really torn about this. Part of me did not want to burden her with having to worry about all of this and I figured that I would keep it to myself for the time being or until I absolutely had to tell her. The other part of me wanted to fill her in so that she would not be caught off guard and that I could have someone to talk to about it all. Sometimes those types of choices can be difficult. I decided that it would be best to tell her what was going on and what I found out from the oral surgeon. I have my appointment with Dr. Cross tomorrow morning and Veronica will be going with me. I will make my decision on what I need to do and when I need to do it, by the time I leave Dr. Cross office. I will keep you updated as things transpire. Take care and have a good afternoon. Rick

My Journey Continues

On June 4th, I wrote about some changes that my body was going through. You can go back to that earlier written blog entry to find out how everything started. Today I decided to contunue writing about my new journey. I am usually a very private person but I felt that by writing down my thoughts, it would help me cope with all that is going on and it also might beneficial to anyone out that that is interested. I know that I have always wondered and was curious as to how it would feel to find out that you have a medical condition that could possibly cost you your life and how a person feels when going on that type of journey. Hopefully by me writing about my journey, some of those questions might be answered, you might gain some insight into everything a person goes through, how they think and feel, their ups and downs and everything in between. More importantly, I hope that by my writing down my journey, it might just help someone make a decision that could save their life. I will pick up this journey where I had left off at my last blog entry.
My family doctor diagnosed the raised white marks that are just under the right side of my tongue as being Leukoplakia. Here is a link to more information about Leukoplakia... http://www.mayoclinic.com/health/leukoplakia/DS00458 I was told that these were directly caused by smoking and that they would eventually go away after I quite smoking. I was told that they could take as long as 3-6 months to finally go away. I was also told that I should get a biopsy done on my tongue, specifically in the area where these white marks are. The doctor told me that it was a relatively simple procedure...all the oral surgeon would do is scape the area where the marks were and send the scapings to the lab. Sounded simple enough to me. I set up an appointment with an oral surgeon that my doctor recommended. On Monday, June 7th, I went to the oral surgeon. The doctor looked at the marks and told me that he would recommend that I get the biopsy done on the marks. He said he could do the procedure right then and proceeded to explain what would be happening. He told me that he would numb my tongue before giving me a couple of shots with novacaine type of substance. That way I would not feel the needle as much. A great theory but not exactly how it played out. Of course there was the usual mention that the needle going into the tongue would only feel like a bee sting. I can't begin to imagine how they came up with that analogy. I have heard that "will hurt like a bee sting" statement so many times in my life and I was always curious as to where the hell they located these bee that sting the way they do...must be some little known jungle somewhere, where the bees have 6 inch stingers on them. Point being(no pun intended)...it hurt like hell. The oral surgeon told me that he would then cut a section of my tongue out and send that section to the lab. It is amazing how different doctors use totally different terminologies to describe what is going to be done to you. One doctor says scrape and the other says cut. Believe me...there is a huge difference between those highly advanced medical terms. Did I tell you that the shots into my tongue hurt like hell....I might have mentioned that earlier but I think that a second or third mention is justified. Very uncomfortable would be an understatement but that was just the beginning of the fun that was in store for me. After letting the novacaine type of numbing agent take effect, the oral surgeon grabbed my tongue, pulled to to the left side, halfway out of my mouth and then I could feel him applying pressure with a scalpel on my tongue. Now granted my mouth was somewhat numb but just felling the pressure and with my vivid imagination working in high gear...let's just say that it wasn't one of my better moments. Of course the surgeon was talking to his assistant asking her to pull here and cut there and hold the skin this way and to give him the container, which was used to plop my slab of tongue into. The whole time this was going on, my toes were curling up....this wasn't from a orgasmic release of endorphans either.... and I could not wait for the ordeal to finally be over with. It was one of those events that never really leave your mind. Years from now I will be able to remember just how it all went down and I will get that feeling in my stomach all over again. The next thing I know, I can see the oral surgeons hand holding a small hook like thing with string dangling from it, which I quickly learned was for several sutures to close up my tongue with. Some gauze was put between my tongue and cheek to help stop the bleeding. I was given a package up gauze for future use, given an appointment to come back in 2 weeks and sent on my merry way. I left learning something....always get all information about any surgery that you are going to have. Leave no stone unturned...ask questions and get answers. That way there will be no surprises. During my entire drive home, I was switching out the gauzes. When I got home I looked in the mirror to see what kind of damage had been done. It wasn't a pretty sight but at least it was over with. At some point in time, the gauze pads must have rubbed against the sutures and got caught on them. I checked in the mirror about 2 hours after getting home and the sutures were no longer in my tongue. I found one of them in one of the used gauze pads. The next couple of weeks were rough. My tongue hurt bad and i had a hard time eating. I started of eating soft stuff like pudding and jello. Then I graduated to soup. Eventually I was able to eat regular food and was allowed to sit at the "grown ups" table again. I tried not to whine and complain too much...I did not want my wife, Veronica, to know how bad I really felt. Sometimes I keep these things to myself. As the days went by, it finally got better. It has not completely healed but at least it is not hurting like it was. I think that it would have healed up quicker had the sutures remained in there.
Yesterday I went back to the oral surgeon to have him check on my tongue and get the results from my biopsy.
The biopsy results were not what I was expecting at all. I figured that I would be told that I had Leukoplakia as I was originally told. I will continue this journey in a little while. It is break time. I will be back later.