Saturday, June 16, 2012

Sometimes just a friendly voice is all you need

If you ever find yourself in a situation where your courage and resolve is being tested, maybe what you need is to hear a friendly familiar voice that you trust and who can reach through your fears and reservations to make it all clear.  Sometimes when things seem to be so overwhelming and you don't know if you can follow through with your plans, talking to someone might be the ticket to help you strengthen your resolve and presevere.  Let me give you an example of this I have an abiding fear of doctor's and hospitals, and in most cases I have put off till the very last possible minute to go to either one.  This wasn't always the case, but over the past 6 years or so the fear has gotten to an extreme point.  Between 2004 and 2008 I would say that I had to have my arm twisted or pulled to get me to go to the hospital, either by Joe Royer or Sterling Williams, both of whom were my ex-lovers.

I guess the fear stems from the fact that when I was in my 20's I had to go through extensive chemotherapy and radiation treatments for a tumor that metastasized in my colon.  I was in and out of the hospital so much between '92 and '95 that I never wanted to see the inside of a hospital again.  But, in 2004 I got sick again showing similar symptoms as the first occurrence of cancer. Back then I was in a relationship with Joe Royer we had met in the late 90's and were together as a couple till '06 but still lived together and were friends till '09.  However, that is another story.  What is important here is that there were several times when Joe had to force me into the car and take me to the hospital because I wouldn't go. I knew I was sick but I didn't want to have to face the truth of the matter. I wanted to live in denial. Let me tell you it is not easy to do that when they keep opening up your stomach and taking out all your pieces and parts.  On several occasions I cut it so close heading to the emergency room that they had told Joe and my parents that if I had waited 10 minutes more I would have died.

Now this fear may not seem rational to you, but if you would grant me the patience to try and explain how it scares me and what it means for me to go through that experience you might just begin to understand.  In the early 90's when I was being treated for cancer, the drugs they were using for chemotherapy were nicknamed Red Devil, it was a cocktail of three very toxic drugs that would attack the cancer and the surrounding cells.  The treatments would take 5 hours to administer and then I would be so sick that I would spend the next three days vomiting, literally never leaving the bathroom.  I was prone to catching all sorts of infections and colds and before I knew it would be locked in a hospital room for several months in isolation to keep me from catching the same infections again. This was a recurring theme of my life from '92 till late '95.  There was one point that I end up in the hospital for 5 months straight.  So you can see confinement in a hospital isn't a fond memory.  On top of being extremely sick, loosing my hair, I lost my boyfriend and even some of my friends from High School because they were afraid.

See when I was diagnosed with cancer the tumor was 8" long by 5" wide, it had serrated edges and it had ulcerated down the middle, so the cancer as you can see was extremely far advanced.  Stage 4 is what they call it, or end stage, meaning the end of life.  My parents and I were told that I had 18 months to live and trust me with how sick the drugs made me I didn't think I was going to make it that long. However, I am still here and it is 20 years later, however the fear of hospitals still remains.  I think that the second round of cancer strengthened that fear a lot, because the second time I wasn't treated with drugs at all they began operating on me and taking out parts that had died, ceased to function and a whole host of other reasons that I honestly don't want to go back into right now.  But just for simplicity sake I will tell you that they removed the posterior wall of my rectum and about 12" of colon on my first operation and told me that they performed a temporary colostomy that would have to remain in place 90 days.  I went through that, and after the 90 days they performed a reastimosis (basically they fused the two ends of the colon back together) so that it could heal properly they put in and ileostomy to by pass the newly attached colon sections.  The ileostomy was only supposed to be in place for a maximum time of 5 months, that would give the colon time to heal properly and strengthen.  Problem was while they were doing all this cutting on me and removing the bad pieces my oncologist was trying to discover what was causing the tissue to die, because while there were trace lymphocyte cells (I had lymphoma) there wasn't any formed tumors for them to attack.  What was discovered was that the radiation treatments I had been given in the 90's had caused radiation sickness which has since been named radiation enteritis.  A fancy name for telling me that they gave me too much radiation during a time when they had no research on what the long term effects would be on people being treated by it.

Yes that's right in the early 90's the people being treated with radiation were primarily older men who had advanced stages of prostate cancer and older women who had breast cancer.  These patients already elderly weren't living much longer than the 5 year cure mark that is given to a cancer patient.  What I mean by 5 year cure mark is this.  If your body shows no signs of cancer after 5 years you are considered cured, or upgraded from cancer patient to cancer survivor.  The problem is no one knew what the long term affects of being treated with radiation were going to be.  Now, 20 years later I am still dealing with the effects that this line of treatment has caused.  As you read above I have had 2 colostomies and 2 ileostomies, reason for this is after the colon healed and sufficient time was given they tried to do a reversal and hook me up normally.  Two problems arose almost immediately from this, one was the colon had lost it's motility, that is the undulating motion it uses to move food through it.  So it was just like a dead hose with waist always flowing through it.  Second problem was a suture was discovered that had been left inside of me since the very first operation and it shredded my sphincter muscle and I had no way to stop the flow as it cam down the pipe, oh and I forgot to mention that the place when they decided to fuse the colon back together created a narrowing called a stricture, and at first it was flexible and would stretch with minor operations called dilations only problem was over time the dilations were not effective and that stricture area died and calcified becoming hard as bone.  With all of these issues a second colostomy was performed but I kept getting intestinal blockages and after 90's days of having the colostomy, and being in the hospital every other week for 3 days at a time, the doctors decided that I needed to have the colostomy reversed and and ileostomy performed so that the colon could eventually heal.  So in September of 2007 I had a ileostomy put in and it has remained in place till today.

So again, spending a great deal of time in the hospital from 2004 till 2007 you might begin to understand my reticence in going to hospitals.  But to make matters worse, in 2011 I developed kidney stones for the first time and spent the greater part of October and November in and out of the hospital once again.  Finally having the stones removed in December of 2011.  I moved to Florida on February 3rd and was still having quite a bit of blood in my urine, and after having several kidney and bladder infections decided it was best to go to the emergency room on March 5th when I started running a fever, I didn't ever want to have another kidney stone problem again.  Only this time it wasn't the kidney's that were giving me a problem, my colon itself was ulcerating and ruptured in 2 places.  On the morning of March 6th, at 4:30 am I underwent emergency surgery to save my life, and low and behold they had to cut me open from breast bone to groin once more.  I woke up with not only my ileostomy but with a colostomy as well, 2 bags. Ugh, you can imaging my horror and surprise at this turn of events.  Needless to say I was not amused.  I was in the hospital for 19 days, 11 of which were in intensive care, and I had to follow up with 8 weeks of IV antibiotics at home, it was a nightmare but I lived through it.

Now one other person needs to be mentioned here, when Joe and I broke up a person named Sterling came into my life and we spent 2 1/2 years together, he had to force me to doctor's and the hospital and when he couldn't get me to go he would get Joe to make me go with both of them fighting against me I would cave and go.  Let me also stop a minute here and say something that has long been unsaid and has probably made me one of the most ungrateful people alive today.  This is something that should have been said a long time ago to both of these men that have been such an important part of my life.

First, let me address Joe, I want him to know that I appreciate the sacrifices he made on my behalf and how he lovingly and wonderfully took care of me when I was so sick and he put up with my anger, grief, pouting, screaming.  He walked the floors at night with me when I couldn't do it on my own and the pain was so unbearable.  He endured so much and gave so much of himself, and I want him to know I did see and recognize everything he did for me, gave up for me, and how through it all he was a rock I could depend upon a bridge to life and sanity, and I want to say "THANK YOU", I also need to say "I AM SORRY".  To Sterling I want to say thank you for being there with me and taking me to the hospital. For yelling at me and trying to beat it into my head that I was important and somebody, you helped me recover my sense of self, helped me rebuild my self esteem and gave me a new purpose, you helped me see that I had so much to live for and that I had accomplished so much and that I shouldn't throw it all away.  Lastly, John Gillespie needs to be mentioned here because he has been my best friend for 20 years and has held my hand through a great many things, failed relationships, failed jobs, and gave me the direction I needed to bring back the old Bryan that had died and disappeared in the face of Cancer, Surgeries, HIV etc.  If it wasn't for these 3 individuals I wouldn't be here with you today writing this blog.

Here we are back to the point at hand, when your courage is failing and you have to take a risk or do something that you are unprepared for, sometimes you need to just talk to someone, it really doesn't matter what it is about, or where that conversation takes you.  What matters is that you hear a voice of reason someone you trust and care about, someone that cares about you, they know what you have been through and what you are going through.  Monday is coming up fast and I am facing the scariest challenge of my life and I needed to hear that voice. I needed someone to tell me it is going to be okay and that I am doing what is right.  You see I have been thinking about cancelling the surgery since Thursday when all the problems came up with the insurance, I am scared, there is a very strong chance that I may not make it through this surgery.  I could die on Monday and that will be the end of this fragile thing called life.  The long battle I have been waging against a failing body and declining health may be finally over in just a few short hours.  Yes I am scared, and I have made some pretty stark decisions that I was starting to second guess.  Such as no resuscitation this time, no life support, no blood transfusion and the list goes on.  I decided that I was going to leave it God's hands and I have tried my best to make my peace with everyone that has mattered in my life.

Sterling called me tonight and we spoke for 10 minutes or so, nothing important was really said, it was the sound of his voice and the re-assurance he gave me that I was doing the right thing, that he was there supporting me and that everything was going to be okay no matter what the outcome of this final battle is on Monday.  Sterling has been with me through this since March encouraging me calling me to make sure I go to the doctors and reminding me that there are people out there that care.  Sometimes, I forget that there are more people in my life then those from my last trip to Atlanta. People who really knew me, people that have carried me and supported me through this long drawn out war.  I was focused on the little group that I associated with this last go around, the drug culture I had immersed myself in.  The ones who claim I am nothing but a liar and a traitor, a person who escaped from that rung of life and went back to the station I belonged.  Now that I have talked with him and have written this I feel a lot better about my decisions and can go on Monday and know whatever happens I am ready.

When you are in a situation where you are threatened to be overwhelmed by fear, and you start second guessing yourself, pick up the phone and call someone. Someone you trust and love and just talk, hear their voice and let it sooth your fears and worries. Cling to those things that are important to you and remain steadfast in your resolve.  No matter the outcome great things are in store for you...Just like they are for me, Whether here on Earth or in Heaven, I am ready!

As always my hopes and dreams are with you,

Uncle B