Time and Again

This post is meant to give thanks to the many healthcare providers that have been extremely instrumental in my continued health. Yes it is true that almost weekly I have a myriad of medical appointments and lab work that needs to be done. Yet, if it wasn't for the diligent work of these health care professionals I would probably withered away and have died way before now.

As I am sitting here waiting to be seen by yet another doctor, I am reminded of how much hard work and long hours these professionals put in just to keep​ me as well as their other​ patients healthy and alive. I know that I would be hard pressed if I had to go without the medications that I am on. Monitoring of these medications and the effects that they have on my body are essential to my good health.

There was a period not so long ago when I was on an HIV regimen that wasn't closely monitored and my health severely suffered because of that. It was determined that the regimen that I was on had severely and irrevocably damaged my kidneys. Once it was discovered a monitoring program was soon put in place, but the damage was already extensive and done there was no coming back from it. Less than a year later a small tumor was found on my right kidney and my new journey had begun.

It has been a little more than a year that the tumor on my right kidney was found. The myriad of doctor's and healthcare providers I have been through in just that year alone has been staggering. I'm currently under the care of a urologist at the University of Florida in Gainesville and it looks like the year long journey that I have been on is finally drawing to a close.  This journey has been long and arduous starting with ultrasounds, then CT scans and ultimately ending in a series of MRI'S all of which had indicated continuous growth and the possibility of spreading.

You would think that after 25 years of battling this disease that I might have finally become used to all the test, treatments and surgeries that have resulted from having this disease. But, time and again cancer seems bound and determined to come back. It keeps these myriads of healthcare professional working harder than ever to get me to the state of wellness. Sometimes I dream of having just a few moments of good health to consider myself​ normal and healthy.

I guess as dreams go it isn't a bad one to have. But, no matter the circumstances I am under no illusions that I will ever be able to live my life as a healed, whole individual. That even through their best efforts medical science can only do so much to correct the damage that cancer has done to my body. I must accept the limitations and restrictions that have become my norm and rejoice in the continued life that God has granted me.

Remembering always that man can only do so much when it comes to this vehicle our mind resides in. God who is the Ultimate Physician is the only one with the power to restore me back to full health. I can never truly trust the findings of the world of medicine, because as been my case in the past the predictions that they provide me with have been far from accurate. Only God knows the time and place of my demise. Because everything that I have been through and continue to go through are what strengthens me and gives me the experience I need to get through the next phase of my existence.

See, I have become very familiar with living on borrowed time knowing that any moment might be my last. Knowing that each time I have to have an operation or treatment might be my very last. There seems to always be a new treatment or procedure that has yet to be tried. I'm comforted knowing that in all things God has me in the palms of His hands and that as long as I am needed here on Earth I will continue to make these recoveries and be able to give witness and testament to the miracles of God.

So no matter if time and again I have to be seen by doctor's, nurses, lab techs or other healthcare professionals I will always be in God's Grace and He will take care of my needs .

Rejoice for God is the Healer and architect of your body and can and will restore you according to His detailed plan regarding your life and work.

As always Live well, Love much and Laugh often.

Uncle B

The big C not totally unexpected but still?

I was talking to my father yesterday afterr meeting with my urologist.  I told him that I thought it would get easier thelonger I dealt with cancer.  But the truth of the matter the disease scares the hell out of me.  I have seen what it has done to other people, and I certainly have had my share of experiences with this disease.  Yet, each time I am told by a doctor that I have cancer that  same old feeling descends on me and I feel helpless and afraid, just like the first time I ever heard the name mutttered in my direction.

Now, if you are a faithful reader you know that this is definitely not my first time at this rodeo, as a matter of fact this is my 4th reoccurence of cancer in one form or another since 2005.  So when I entered the doctors office the verdict was not totally unexpected.  When you have lived as long as I have and have continued to battle the same disease over and over again, you sort of become an expert in strategy and tactics that the doctors have in their arsenal. Not to mention you become highly tuned to the inner workings of your body that nothing  creeps past you and jumps out from the shadows. 

Luckily when I was 23 and was diagnosed with cancer the first time, the chemo and radiation were highly effective and I was able to enjoy 11 great years totally cancer free.  I would say that this was the time that my life and career actually excelled and I accomplished meaningful tasks and learn so much.  It was during that 10 year break that I learned everything I could learn about the disease that I had, and how my body felt throughout the different stagesof treatment and trained myself to look for recurring symptoms that might indicate the a major change was happening within my body.

But, no matter how much you know and how well you think you are prepared you never like to hear the words cancer when referring to yourself.  True there are all sorts of new treatment options and a great many people survive and eventually become cured.  In my case I have been attacked on 3 occasions with 3 different types of cancer.  The first one is Large Cell Lymphoma,  this is a non-hodgekins lymphoma and it primarily attacks the lymphatic system and is very fast growing.  The next was colorectal cancer and that in comparison with Large cell is a much slower growing and moving type of cancer and in most cases surgery seems to be the best offer.  If you  have a localized spot where the tumor has grown and is contained within an organ or a cavity, these types can be easily removed with little because they have not begun to spread. 

I have learned that chemo is so harsh on the body andit is actually industrial stregnth poison that is injected to your blood in the hopes that it will kill the abnormal cancer cells before it kills your healthy good cells.  Which in and of itself seems like a risk that has the potential for great success or for great failure depending on your body and the resiliency of the cancer which they are trying to fight.  Repeated treatments of chemo add the potential for large amounts of scar tissue to be formed where damaged cells have tried to protect themselve and recover from this harsh toxic agent.  This can lead to complications down the road, because as scar tissue is formed abnormal cells can also form right along with it.  These abnormal cells when they grow together are called a tumor and are the basis for cancer.  Thus begins a vicious cycle.

Cancer can come back multiple times and can form due to many different reasons, some genetics, others damage to organs and tissue.  Whereas, certain medications can cause certain problems to creep up and from there the cells can easily be mutated and viola, cancer is once again a major player on the field waging war with you entire being.  In my case the HIV drug called Atripla is largely responsible for the damage to my kidney.  The component of the drug cause some trauma to my kidney and impaired it's functioning.  This impairment became great enough at one point that kidney stones formed, and because of their size had to be surgically removed.  What I didn't realize then was that the complications that came up when I was dealing with the kidney stones was going to greatly impact my life in any meaningful fashion until yesterday. 

When my right kidney was filled with stones, my kidney would back up and the bladder would not be able to totally empty itself completely.  Because of this a urinary tract infection soon ensued and the urologist of the time decided that he was going to put a stint into that kidney and by pass the uritors and connect the kidney directly to the bladder and aleviate some of the pain and discomfort I  was having from these infections.  This took place in 2011, and here we are 6 years later and the significance of that action finally hit home with me yesterday afternoon once I got home from the doctor and was able to sit down and think about what I had heard and battled 3 other times in my life.  It is my opinion, which I must say is pretty well supported by the ultrasound and image studies that were done on the tumor before the biopsy was completed.  Looking at the pictures it is fairly easy to tell that the tumor has formed in the most likely spot that a stint would have resided years ago that connected the bladder and the kdiney toget.  

See when the doctor pulled out that stint so long ago,, scar tissue was able to grow over the areas that were actually damaged by the insertion of the stint.  The scar tissue was dense enough that the tumor was able to grow for a period of time hidded deep within.  The scar tissue not only gave the tumor a very good hiding place it also was able to mask the symptoms so I wasn't actually aware taht I was feeling off and that I had another outbreak of cancer.  This being said I want you to know that once again my trip down this new adventure has started out just like all of the other pervious bouts with cancer.

All I can tell you that finding out that the cancer is back and that it is in another location and that you have a chance that this tumor has spread to areas where you can't find it and that is when things really start getting really scary and real period!  I really wasn't surprised that the tumor that they found on my right kidney turned out to be cancerous.  What was surprising was that this was a totally new form of cancer, one that I have had  absolutely no experience dealing with previously.   The up side of this type of cancer is that it currently is localized to the right kidney wall and though it has tendrils that could eventually mean growth and spreading I was assured by the doctor that this was a very slow growing form of cancer and that I should respond to the treatment plan that he put in place to highly favorablely. 

However, with all of that out on the table in front of you to view I should go on to tell you about the entire conversation that I had with my doctor yesterday and sort of point out where the creeping little doubt and fear is coming from with this new found information.  See even though this tumor was caught fairly early in the stages and it is slow growing I have to add in the factor that I have had a very complicated medical history with numerous issues and complications creeping up in all of my previous encounters with this dreaded disease.  So, with all of the previous issues and complication this tumor could actually become more serious than orginally thought, especially if it truly has started to grow and spread.  Because the migration path is not a very clean path and could eally if this isn't handled in the best possible manner could easily spread to my spine and from there pelvis, chest and eventually could even reach my brain.  Once it reaches the spine it is only a matter of time before it goes from casual to tragic.  See I already have spinal issues and compromised bone marrow, and these factors alone make for a deadly outcome. 

A vicious cycle seems to ensue and before I know it the cancer could be everywhere in my body.  Plus the fact that this tumor has grown significantly it's symptoms and pain might actually mask the growth of cancer in other parts of my body and thus lead to a much larger problem than originally indicated.  So I have decided to take the most proactive steps that I can aggressively persue and have selected having a different type of procedure performed that might be able to totally eradicate the diease way before any more significant damage can happen to my body.  I have agreed to let them go in through my back and freezd the tumor which will immediately necratized the bad cells while allowing the good cells to remain unharmed.  I am looking at having to have this surgery performed rather quickly to head off the cancer and be totally healed.

It is just funny that no matter how many times I have been told that I have cancer,  that same ole fear and trepidation seem to sneak in and cuase mental anguish.  Nothing prepares you to hear those words or how to react once you have heard them. But like I told a woman that I met at Family Dollar the other night:  "God doesn't give us more than we can bare, for longer than we can stand!"  Which serves to remind me that this too is just a fleeting problem, and will not last very long in deed and will therefore make me a much stronger person in the long run

As always my hopes and dreams ware with you ,

Uncle B

Real man in a relationship

A friend of mine had posted this in our group and I thought I would share it with you because I believe there is great truth in this young man's words and thoughts. Thank you Ely for letting me share your wisdom!

"A real man treats his partner like a priority, not an option. A real man shows his love through his everyday actions. And a real man doesn't have to be reminded..."
‪#‎ely‬

I have to say Amen to that because he is preaching to the choir here.  I have been trying to tell people this sentiment but I have never had it broken down to me in such a way.  This is truly a young man who has an old soul and a wisdom way beyond his years.  

HIV + Not a death Sentence anymore

As I sat down to write about this subject this morning I thought about coming at this from a historical viewpoint and going over the treatments of the 80's and 90's to that of today. But the fact of the matter is in hindsight it is unfair to compare those times to now, because back in the early 80's doctor's didn't know or understand what they were fighting and trying to treat.  As time went on and a greater understanding was reached by the healthcare industry and researchers new and better treatments were created.  My own doctor confided in me just last week that the only regret he has in his entire medical profession was how he treated early patients with HIV and AIDS because he said he probably killed more than he helped.  It is a sobering thought to look back at those times and wonder if the treatments killed my friends or the actual disease itself.  I have been luckier than most I got infected later in my life, I was already in my late 30's (37 years old in fact) when I was diagnosed.  I lost some very close friends who were in their 20's back in the 80's and 90's.  It seemed to me that I found out someone was diagnosed and the next thing I knew I was going to a funeral a couple months later.  The disease sure took it toll and I think a lot of us can relate to the horror and death that our friends and loved ones went through.

Now, almost 20 years has passed since the disease was thrust upon the world by the acknowledgement of Ronald Reagan that his long time friend Rock Hudson had the disease and money was funneled into research and development for a cure, the newly formed CDC at the head trying to get a handle on the breadth and scope of this thing that until this time was know as the "Gay Cancer" or some other nomenclature that made it out to seem like this disease was solely the responsibility of the gay community. However, it didn't take very long for the disease to propagate and migrate to any sexual oriented group.  It was no longer contained in the Gay World, it became the world's problem.  But I digress here with that brief history side note.  What I am trying to say is this that with the changing times and the mounting numbers of infection, new treatments and research were fueled and encouraged at every level of our society.  Though some of the fervor has died down a little there is still a driving need for new research and treatment options still today.  Pharmaceutical companies are coming out with new drugs every couple of months.

Research has made it possible for an individual who has been infected with HIV to live a relatively normal life for up to 30 maybe even 40 years now versus the standard 10 years that was given to newly infected people in the late 90's.  But here is where I want to encourage you if you are infected to become proactive in your healthcare and treatment options, talk to your infectious disease doctors get involved with your treatment, learn the side affects of your cocktail.  Be active in your participation of your health because you know your body better than anyone else and will know when something isn't going right.  By staying up on you health and being active in your treatment plan you and your doctor can work together to put together an appropriate regimen of exercise and nutrition that will help keep you undetectable and your t-cells high.

Any indication that you might display needs to be taken to your doctor immediately.  I will give you a good example of why in a minute. I would also like to put out a word of warning for those of you who like to party and experiment and utilize recreation drugs.  Be aware that your recreational drug use might hide or mask some of the counter indications you might be having to your retro-viral treatments. In other words you may not even realize you are having problems until it is too late.  Here is my story, as you are well aware if you have been following my blog for any length of time you know that I had a long term addiction to Methamphetamine, which started way before I was ever diagnosed with HIV.  I originally started smoking it and within a few years had moved to shooting it, which believe it or not is how I got HIV, my syringe got mixed up with my ex and he was positive and I wasn't and there it was I got infected. Now, because of my addiction and the amount of meth I was doing, I wasn't aware that the Atripla the drug I was given to fight my HIV was doing anything to my body.  See meth has a tendency to dehydrate you and that of course affects the kidneys well Atripla also is hard on the kidneys and the doctors should be monitoring your kidney functions while you are taking it.  The problem came into play when I didn't admit to my doctor about my recreational drug use, the kidney levels were always off when I was tested.  It wasn't until I got kidney stones that I realized that I had problems.  Now another word of caution, when kidney stones form for a person using meth they are almost indestructible have a smooth edge and a jagged edge and can easily get stuck inside.  So be careful when mixing your recreational drugs with your HIV cocktail because you could end up with some really adverse conditions.  Also be aware of the side effects of your HIV regimen because they might affect certain organs like the kidney's.  Or you might be like me and be allergic to a component of your drugs and not even be aware of it. See my viral load was undetectable and my t-cell count was in the 600's so I had no idea with my meth usage that I was allergic to the ritonivir component which is the base of Atripla and my kidney function was being compromised by the actual drug and the recreational usage as well.  I went through catastrophic renal failure several times and let me tell you that it is painful.

My point in all of this is if you are an active participant in your treatment and are working with your doctors and get tested regularly you will notice any changes in your health and behavior before they can do permanent damage to your system if something goes wrong.  In October of 2011 when the kidney stones formed I was totally unaware of my allergy to the ritonivir, I was taken off my Atripla regimen right away to stop the progression of renal disease, however, I continued to party and do the meth, so my kidney function never stabilized.  When I came to Florida and I had given up the meth and wanted to go back on the antivirals and the retroviral medication for my HIV, the VA doctors looked at the kidney function and decided to test and see which components were making my kidneys worse.  That is when it was discovered that I was allergic to the base component of Atripla, so I was taken off any type of medication that might have ritonivir in it.  Happily I can report that my kidney functions have returned to normal and I am a-okay! My viral load is back to undetectable and my t-cell count is climbing back up.  I am back in the 390's where I was down to 289 at one point.

It has been 6 years with HIV and not one HIV related illness.  I have been told that under the current regimen that I am following that I can expect at least 30 more years of continued good health. I do take a daily multivitamin and I eat right.  I get myself tested every 90 days to see what my viral load and t-cell count is, and I am an active participant in my healthcare plan.  I talk to my doctors and my infectious disease doctors regularly and I keep them all apprised of what the other is doing.  I let each one know if there are any changes in my medicines or medical history that they need to be aware of.  I also have the advantage that I was diagnosed with Large Cell Lymphoma back in 1992 and became very intimate with all the details of my body. So when I got sick with HIV I was already familiar with my body and knew when things felt awry.

I would encourage you to speak candidly with your doctors let them know what you are doing even the stuff you do for recreation purposes, it just might make the difference in your health.   So again, be proactive in your treatment plan and healthcare and let the doctors know when something isn't feeling right it might give them the edge they need to fix a problem before it becomes worse. Don't be afraid to speak up if you think something isn't going right with you.  Stay on top of your situation, get tested regularly and be the main part of your healthcare plan.  Because it is you who will make the difference in the long run. Remember even though you have been diagnosed with HIV you still have a long life ahead of you and make every effort to get every year out of it.

As always my hopes and dreams are with you,


Uncle B