Wednesday, July 23, 2008

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.
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