Sunday, June 10, 2012

Let me say I am sorry.

I need to take a minute to apologize to my readers for not writing everyday last week.  I spoke the other day on having good days and bad days, and let me tell you I had a very bad week.  I told you earlier that I was recently diagnosed with Hepatitis C and I have been very much under the weather dealing with that.

You see having end stage renal disease on top of Hep C is not fun, my kidneys are failing and now my liver is swelling due to the illness.  It was a really rough week for me.  3 days of running fevers and sleeping all day.  The problem for me is when I sleep all day I am usually up all night. On the evenings that I was up late I wrote in my journal and most of the entries were just basic. Most of the entries dealt with what I was going through on a personal level.

I am still not feeling much better tonight, but I felt it was necessary to write to you and let you know what was going on because it is not like me to go so long without writing something. On top of being sick, my stress level has been through the roof, I am getting ready to have another major surgery, and then I am starting treatments for the Hep C, so as you can imagine my mind has had a lot on it.  Further, it has been several days since I have heard from my very close friend that was supposed to be moving from Georgia to help me through this operation, and I am not sure what is going on with him at this point. I had gotten him a phone at the beginning of last month and he had it less than a week and lost it, so it has been increasingly difficult for us to stay in contact with one another.  I know that he moved from Atlanta, to south Georgia with one of his best friends and he did try and call me last Thursday, but I wasn't able to take his call and I haven't heard from him all weekend.

The other person that I am concerned about is my Ex.  I had asked him to call me last week when he had some time and I haven't heard from him yet. I know he was working out some details about a warrant or something and I sent him some money to help with that, but I thought he was going to need me to help him this month and I haven't heard from him at all. I was hoping to talk to him because I wanted to fill him in with the details of what the surgeon and I had discussed and decided for the upcoming surgery.  But since I haven't heard from him or anyone else from my past this past week, I figure you my readers will need to be informed because there might be a few days while I am recovering that I will not be able to write at all.

Well on Tuesday, the 5th of June I met with the surgeon and it was decided that we were going to wait till after Father's day to have the surgery, and since Father's day is next weekend that gives me a whole week to prepare and get myself ready for this surgery.  After getting a second opinion from the doctor at the V.A.  I went into the meeting on Tuesday with a boatload of questions and concerns that needed to be answered and then I had to make a decision on how I was going to move forward.  Originally, the surgeon and I had talked about a full reversal of both the ileostomy and the colostomy, that would mean I would finally be put back together and I wouldn't have to wear a bag anymore.  However, after meeting with the doctor at the V.A. it was pointed out to me that the reason for the emergency surgery I had on March 5th was because the walls of the colon were so damaged by the radiation that the air used to open up the colon for the colonoscopy burst through the weak parts.  It was explained to me that adding waste to an already fragile system might lead to further ruptures and waste would pour into my blood system further making it impossible for me to get better.  Another situation was brought to my attention, when I had my surgery in 2007 to put in the ileostomy a suture was left accidentally in my colon and had worked it's way through the colon wall and shredded my sphincter muscle, leaving me virtually with no way to stop the waste from flowing directly out of the anus.  I no longer have a rectum and the muscles are also ruined so it would be like a pipe and the waste would just continue to flow with no way for it to be controlled.

There were many other things that were brought to light that got me thinking about how selfish I had been and how I had deluded myself into thinking that this next surgery was going to put me back to normal and make me almost feel like I was human again.  But, the honest truth of the matter is that the damages done to my body by surgery mistakes and then the radiation that was used to treat my cancer in the 90's, means that I will have to have a bag of some kind or another for the rest of my life. If you read my earlier blog entry "What would you do" you will see some of the things I have been contemplating.  Bottom line is this nothing can be done to effectively correct what has been done to me, now they can fix the damaged ileostomy stoma, or they can try and keep the colostomy and see if the bowel will strengthen over time.

Since, I couldn't get in touch with Sterling to ask his advice, I chose to make a decision based on the information that I have, and the reassurance from the surgeon that he will evaluate the situation and move forward appropriately.  I have decided to let the surgeon remove the ileostomy if he he deems that the colon has healed sufficiently and the parts that are left intact can hold waste going through it.  If he feels that he can do that I will keep the colostomy provided that they move it down into the right place, right now it is about 4 inches too high and my skin is constantly irritated by the adhesives I have to use.  So the surgeon is going to evaluate the colon first and see if it can sustain re-connection and the flow of waste through it and also if it can be moved into the proper place without having to go through extensive amounts of scar tissue and if it will actually stretch that distance.  You see the last surgery I lost my sygmoid colon and my ascending colon, which doesn't leave a lot left to work with.  The surgery I had in 2007 used my descending colon detached from my rib cage and stretched across my abdomen.    So if the remaining colon is long enough to reach the proper site where the stoma should be and the scar tissue isn't bad and it holds up to having waste go through it, we are going to keep the colostomy.  This would make caring and cleaning of the area much more manageable and something that I would prefer.  If none of this can be accomplished without risking my life and prolonged health then I have asked that the ileostomy stoma be fixed so that the leakages that I have been experiencing and the pain associated with having it in place for the past five years will finally be eliminated.

So as you can see from all of this, I have had a lot on my mind and some heavy decisions to make all on my own it seems.  Of course I do have my parents I can talk to about these things, but I am currently staying with my father and step mother, my dad doesn't want to talk about anything or even face the possibility that I may not survive. My step mother on the other hand is approachable and her and I have talked about a lot of the details because my father just doesn't want to face it.  My mother who is in Pennsylvania and I have talked extensively about my concerns and wishes and she agrees with my decisions and is supporting me 100 percent.

I have made changes to my advanced directives and living will like I mentioned in an earlier blog entry, as of last week they are official.  The first change is this, I am not to be revived, if for some reason I code on the table and they have to take measures to bring me back I have elected for them not to do it.  Reason for this is I ended up having to be revived on the operating table twice in March and I don't want to have to go through that again. Second, I do not want to be put on a respirator or any other type of life support.  I also do not want any more blood transfusion, since January 2012 I have had to have 5 blood transfusions, which comes out to almost 1 a month.  We know that the leukemia is acting up and that there is blood and protein in my urine and stool. This means that I am bleeding inside and they don't know where, it is a matter of time until the disease wins out since I cannot take the procrite anymore to stabilize the disease.

So at this point I am well within my rights to tell them to let me be at this point. I have had a long battle and fight and I am tired. If I expire this time let me go. This is my decision and mine alone, no one asked me to do this, no one has told me to do anything one way or the other. I just know that from here on out that my body is weakening and that the situation I have to go through is going to get continually worse, so I made the choices I have made.

Now I realize that asking Bobby to come here and help me through this surgery and recovery was pretty selfish on my part. I also realize that trying to think about a relationship or any other type of situation on a personal level is beyond me right now.  I am going to have to deal with this on my own, and try to make it through the recovery period and then I can think on my future and love life after that.  Right now I don't really need the distractions.

Any thought you might have please drop me a line.  You can write to me at or you can leave a comment right here on the blog and I will respond. You can also get at me on facebook or twitter.  I look forward to any well wishes, statements, concerns or any other thoughts that you might have as I get ready for this next surgery. Let me hear from you. let me know that you are with me in this and that I can count on you guys reading me when I get through this surgery.

As always my hopes and dreams are with you,

Uncle B