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

Do not Surrender

It is amazing the things that you can hear when you just sit there and listen.  Last evening a friend of mine from the Snellville days contacted me via Facebook.  She talked and I listened to what she was willing to share with me. As she was talking she said that a true friend never gives up on another friend.  As I lay in the bed I began to think on this and ponder it some more. If you are my friend on Facebook you know that I was unable to sleep last night because my brain seemed to be working in over time.  That simple statement tugged at me and pulled at me, so I began to think about my life long friends.  The ones that I have had for 30 + years. I analyzed the characters of these friends and their caliber.  I wanted to know what made them tick and how we remained friends for so long.

I can honestly say that two of my friends have been through it all with me, the thick, the thin, the boyfriends, the relationships, the moves from Atlanta, to Pennsylvania, to Arlington, back to East Point and so forth.  These two people are rare in the fact that if they had not been in my life I would have died a long time ago.  One of them gave me inspiration and hope while the other one held my hand and cried with me.  Sa'corey knows what I am talking about because he was the one that sat on my bed with me and cried with me when I found out I was HIV + and again when I found out that they were going to have to remove my large intestines.  He wiped my tears, held my hand and let me cry on his big shoulders.  My friend John pulled my head out of depression and set me straight on the path that I am on now.  He looked at me one day shortly after they had removed all the staples from my abdomen and told me that he wanted to know where I was, where was the real Bryan, because the Bryan he was seeing wasn't the person he grew up with.  He told me that he admired me and that I had been the type of person that would set their mind to a task and just go out an get it.  A person who was confident and sure of what he was doing and wasn't afraid to learn new things.

That night I thought about what he had said and I wondered if he was correct if I had lost a part of me.  The more I thought about it, the more convinced I became that they were both right.  Sa'corey told me that I was a strong person and I could face what was happening too me and I would win and beat it.  John had pointed out that I was a leader and not a follower, that I had given a part of myself away and that I needed to reclaim it, for if I did I would be able to conquer anything that was thrown at me..  Now you can imagine what my life was like at that time.  I had serious doubts about everything, I had seen the specialist in New York and I knew that nothing could be done about my condition. The damage was done when they operated the first time.  Dreading and fretting that my life as a gay man was over terrified me and weakened me.  But, because of my best friends surrounding me and encouraging me to stay vigilant and strong, because they knew I was going to own this dragon or demon that had attached itself too me.

Upon reflection John was absolutely right I had lost my focus, my drive and my will to survive, and those were the very things I was going to need to rise up and fight this battle.  Sa'corey and John saw something in me and knew that God was with me.  Sa'corey sat with me the night before my surgery and he told me that there were angels all around me and that the light coming from me was brighter than ever. I knew in that moment just how Love, Blessed and Anointed I was, and I was to learn that I was also favored.  I knew in my heart that I was going to make it through the surgery and live, because I knew that God had work for me to do.  This is how awesome God is, that surgery that I had in September of 2007 was more extensive and invasive than the first surgery that I had back in 2005, yet I felt no pain.  My original surgery the pain was so great that I had to walk around the house for hours to lessen it's grip on me.  But I swear to you that I had no pain with this  surgery at all.  I did however lose a lot of weight and started running a high temperature it got as high as 103.7 and when the fever hit me I was unable to walk.

My mother and her friend literally picked me up and put in the car and drove me to the hospital.  Under my staples and abscess had formed and my body was getting weaker and weaker.  The doctors were relying on antibiotics, but that wasn't what was needed at all.  On the third day of the IV antibiotics the surgeon came in and told me that if something didn't change soon that my body was going to shut down and I would drift to sleep and never wake up.  I don't know why I thought that was funny but at that very moment I started to laugh and it was a good laugh it filled my lungs, and bolstered my courage.  So I asked the doctor for some hydrogen peroxide and some que-tips because I couldn't stand how crusty and nasty my staples had become.  He told the nurse to bring it too me that I couldn't hurt myself that I had already gone septic.  She brought me those long wooden que-tips and a small cup full of hydrogen peroxide.  She left the room and I set about to start cleaning my wounds and staples.  Maybe it was the hands of an angel that guided my hand as I made the first mistake, which turned out to be the proper course of action.

I had started cleaning the middle staples because these were the worst crusted of all of them.  Because that was where the initial infection had started and where the puss came from. I dipped the cotton end into the solution and I set out to get all the gunk off of me.  If I was going to die then no one was ever going see this.  That is when it happened my hand slipped and the cotton end glided across the staple surface and went directly into the wound and when I pulled it out the puss and infections started erupting from my abdomen. I called the nurse who brought me sterile gauze and peroxide. For almost and hour and half that wound drained. The very next morning I woke up feeling great I looked down at my stomach and the infection seemed to have vanished.  The doctor came in a bit later and told me that I did what modern medicine couldn't do.  I saved my self by accidentally slipping and puncturing the main pocket of infection and as we were cleaning it out my body went on over drive and defeated  what was remaining.

Why am I telling you all of this?  It is because if I can come through all this adversity and survive so can you. I was born with a fractured skull, my parents were told that I would have brain damage and that I probably would never walk or talk. Well I started talking a little after my first birthday and they haven't been able to shut me up yet.  My mother and father will tell you I have never met a stranger, that I look and bring out the good in people. I am very social and love helping others and. of course I love to write and talk.  But why the title Do not Surrender?  What am I trying to tell you?

My friends whenever someone is told that they have cancer they automatically believe that their life is going to end and they are going to wither away and die.  Some of them might, but most will find that the new treatments are not as harsh as the ones I had to take and there is a much higher success rate with the newer drugs.  So there is hope .  Look I am going lay it out for you straight and to the point. Last year in 2014 I was told that I had 6 terminal illnesses and I had an aneurysm which caused me to need 28 blood transfusions.  I also suffered from a severe case of osteomilitis and was almost paralyzed my spinal cord was seriously compromised.  Yet, when Grace from physical therapy came in that first day and told me that I was going to be stuck in that chair for the rest of my life.  I literally laughed at her like I did the doctor in 2007.  Difference this time was some permanent damage, my spinal column has collapsed due to hundreds of microfractures in my thoracic spine.  The damage has been confirmed to be between the T5 and the T10 vertebrea.  With that being said my rib cage is compressed and I cannot fully expand my lungs because it hurts too bad. Oh and by the way within 2 weeks of her telling me that I would never walk again I carried myself to the gym after training hours and I worked out on the balance bars, I drug my feet along and forced them to work and I was rewarded by being able to walk. Once i left the wheel chair I went to the 2 wheeled walker and had that for about a month or so and then I had  the 4 wheeled walker and though I still have the 4 wheeled walker I no longer need it. I walked out of the nursing home using my cane and today I don't have to have any type of  device to help me walk at all.

Now I have gone through all of these things to show you that no matter what you are going through or what you have to face that God has got you. You do not need to worry, lay your problems at His feet and walk away leaving them there because He will take care of them.  Just keep in mind that our time is not His time.  We might begin to panic but remember that God is always on time.

Do not surrender to your illness, do not surrender to depression, do not surrender to peer pressure, and do not surrender to temptation.  Remember that God has got you, He has a host of angels that surround you. But, most importantly keep in mind that this too shall pass.  No problem is as permanent as the solution.

As always my hopes and dreams are with you,

Uncle B

The central nervous system and back pain aren't a joke

For those of you who have never experienced any type of back pain, you are very lucky.  I will never again think that people who complain about their back hurting aren't in some serious pain. Because back pain is the worst kind of pain that you can experience.  My mother when I was growing up would always complain that her back hurt, that it was always going out.  Honestly, back then I didn't know anything about it, and I sort of just shrugged it off.  She is now 68 years young and almost 2 years ago now she was going into a store. It was cold out they had just had a hard freeze where she lives.  As she was entering the store she slid on a patch of ice and went down.  She wasn't able to get back up and an ambulance had to be called.  That was the last time my mother was able to feel her leg, feet, ankles or anything else from the waist down.  She like many other people in the nation had developed an infection in her back.  She was actually in the hospital for almost a month before they did an MRI and what they found surprised everyone.  They found a huge mass in her back that was threatening her spinal cord.  They decided to go in and do a biopsy, but this was not a mass or a tumor in the traditional sense.  This turned out to be an abscess a huge collection of fluid that was weighing down and pressing on her spinal cord.  When the doctors went in to do a biopsy the abscess actually ruptured and my mother body was exposed to the fluid and puss that drained from that abscess.  Try as they may the doctors worked feverishly to was this fluid from her body.  The process is call assuage and it is very dangerous.  What ended up happening is that her leg nerve cluster was nicked in the process and she lost control of her legs.  This wasn't even found out till she was in a rehabilitation center for almost 3 months without any type of improvement.  So the doctors opted to go back in and see what was wrong and why she wasn't healing as planned.  Long story short they should have left the situation alone, because as they went in this second time they ended up damaging her spinal cord and now she has no feeling from the waist down and is now confined to a wheelchair.

No one knows or understand why an abscess formed in a closed cavity like that when there had been no recent trauma or invasive procedure. It was just something that happened and now after being in a nursing/rehab center for over 9 months she is finally home.  Coping as well as she can with her new found limitations.  She still suffers from pain in her feet, legs and back.  I speak with her everyday and even time hasn't lessened the pain she has been suffering.  With the damage done, a permanence to the situation has occurred and other things are starting to suffer because of it.  Her feet, since they are not used regularly are weakening and the ligaments and tendons are starting to shrink causing the tremendous amounts of pain she is feeling in her extremities.  It will also make it impossible for her to recover and walk like a normal person.  Even if she opted for some type of surgery at this point it would be ineffective due to her movement limitations.  This is a situation that may have been prevented if years ago I had paid attention to the pain that she had been feeling when I was in high school.  I remember an incident that happened when I was in my senior year, she had fallen on the bathroom floor in her room and couldn't get up.  She refused to let anyone call my father or an ambulance and stayed laying on the floor for several days till she could get back up on her own.  Hindsight they tell me is 20/20 and that might have been the first time that her spinal cord was impacted and had she gone immediately to the doctors then what has happened to her might not have occurred but again that is just idle speculation at this point and something that cannot be changed.

You maybe wondering why I am writing about this and what happened to my mother, and what if anything it may have to do with you.  Well, see this incident is just one example of what can happen. For my mother there is nothing that can be done.  No amount of time and healing will change the fact that she has lost her independence and can no longer walk more than a few feet without some type of assistance, and she will never be able to drive again.  Further, if it wasn't for the wheel chair and leg braces and some other types of assistive devices she wouldn't be able to sit in a regular chair or get out of bed on her own. I am bringing this to your attention for several reasons.  What we often take for granted are actually signs that something is wrong. They are symptoms of a larger problem and if we ignore them we run the risk of them cropping up later and causing much more damage than if they were treated at the onset.  Modern medicine has a habit of treating the symptoms and not getting to the root cause and stop the symptoms.  It wasn't like that in my grandmothers time and people were getting healthier and living longer.  Today it is so much more easy to see a symptom and throw a pill at it and never look for what is causing the problem.  I know from first hand experience and I too will have to live the rest of my life with mistakes that were made not only in the past but some that just happened recently.  We will get into that in just a moment.

The reason why I am bringing all of this to you attention is because you never know what could happen to you.  Now, back in May I started having a slight pain in the middle of my back. I immediately went to the hospital.  X-rays were taken and I was seen by the ER doctor and sent home.  I was told that I had a back strain and given some pain medication and sent home.  My back instead of getting better started getting worse. I hurt all the time and stayed in bed a lot.  I went a total of 19 times from May till September when I was finally admitted to the hospital.  What was going on was not a minor sprain, I had a bacterial infection that was attacking my spinal column, vertebrae and my spinal cord.  I came very close to spending the rest of my life in a wheelchair.  I am angry with current medical establishment why throw pills and more pills at symptoms and never try and find the root cause of the issue?  Had they dug just a little deeper into my situation I might have saved myself countless hours in the hospital, nursing home and ER visits.  Not, to mention all the money that I had to pay out for all of these different things. Luckily my back is starting to heal itself to a certain degree. I will forever have this hump on my back but i think the pain will start to subside as the broken vertebrae start to fuse together.  I will also lose some of my maneuverability, but I am still alive, and though the odds were against me walking again. I vowed to myself that I would not stay in that chair and I forced myself to learn how to walk again, and within a short amount of time I was walking with a walker and now today I use a cane.

Because of how the bones started squeezing my spinal cord, I have lost strength in my left side, I started stumbling and started having convulsions and seizures.  Had the doctors taken the time to dig into my symptoms and searched for what was actually causing my pain the permanent damage that has been done to my body could have been avoided  Another, example I have for you is my best friends mother is having a lot of pain, problems speaking, as well as walking and getting around, her strength is sapped doing the smallest thing.  She went to a big local hospital and instead of going into detail testing they did an MRI and some neurological test and came back to her and told her they were sorry she has ALS or Lou Gherig's disease.  Boy, the back really isn't anything to play with. Come to find out she went to a chiropractor, who looked at her x-rays and told her that he thought that she had a extreme case of scoliosis and that was causing pressure on her spinal cord and that was what was causing her problems. For the past 2 month she has been getting chiropractic treatment and her body is responding well.

For all of medical science it is sad that they didn't look beyond the usual suspects and really do their job.  Now that she has been participating in chiropractic treatments she is starting to feel better and her motor skills seem to be improving.  Above all things I want you to walk away from this article with the wherewithal to challenge the doctors and nurses when they tell you that there is nothing wrong with you. Make them really look at you, listen to you and above else explore every option.   You know yourself better than anyone else. Do not be deterred make them look, listen and respond to your needs.

As always my hopes and dreams are with you,

Uncle B

What To Do If You Find Yourself Limited

There are many things that can happen to you that limit your ability to do certain things or activities.  No one ever wants to admit that they are getting old.  That they physically are unable to do the things that they once were able to do.  It can even happen to a younger person due to illness, disease or an accident.  Hell we have people that fought in Vietnam, Korea or even in the recent and past Gulf conflicts that were injured, may have lost a limb, or been injured and now are physically impaired.  So what happens if something that you love and are use too has been taken away from you? That there is no way that you can ever be able to do that activity or function again.

Here let me digress a minute and fill you in on some rather personal information, some of you may already know, but here goes anyway, my big dark secret and a fear that I have been carrying around since June.  On June 13th I went in to the hospital to have another bowel resection, they were supposed to remove the colostomy that is acting as a mucus fistula and try and eliminate the ileostomy at the same time.  Now, this would have been wonderful and a dream come true.  But the reality of the situation is that there has been too many surgeries, too much inflammation, scar tissue and adhesions that have built up because of those surgeries, not to mention all the damage done to the tissue and the pelvic cavity from the radiation treatments.  What was discovered is that as soon as the scalpel starts cutting the abdominal wall, my blood pressure drops to dangerous levels, my breathing becomes erratic and my heart rate declines and my body starts to flat line.  Meaning that if they were to continue the surgery I would have died without any chance of revival.  This was the end of my dream and hope of finally being a whole and normal person.  I have been told recently that neither of the surgeons that have handled my situation in the past were willing to open me back up under any circumstance.  That it would take a skilled team of professionals to handle any further surgery that I may have.  Unfortunately in October it was discovered that the stricture that developed when they fused the two sections of colon back together has grown closed and that I would have to have another surgery.  This surgery is going to be extremely risky and may actually end my life. However, it has to be done, the mucus fistula is not working like they thought it would and fluid continues to build up on my pelvis.

Now, the reason why am telling you all of this is because of the simple fact that the colon has grown totally closed where it was fused is what is causing the fluid to build up. It also precludes me from having any type of anal penetration.  Further, the surgery during the emergency surgery that was performed in March, I was cut open from my breast bone down to my groin. Now I am talking all the way down to the penis, because of how deeply I was cut and the way that the muscles grew back together an inch or more of my penis is now indented. Which means that the length of it is now noticeably shorter.  This for the most part will preclude me from having sex with most gay men, due to the scarring and the length.  So overall in my mind I would have to say that sex for me is now completely finished, over and never to be had again. Seriously, this is a daunting proposition for me, because as people from my past can attest I love sex, it was an activity that I actually was pretty good at and have had some considerable practice at.  No I wasn't promiscuous or anything like that, but there was a time and a place where sex was something that I literally breathed.  This is just one example out of many others that I can throw at you. My mother had a friend named Jeanette, who lived to be 91 years old.  Up until she was 89 she was very active and vigorous in her daily activities and in doing yard work.  She got sick in her 90th year her, she suffered terribly from arthritis and COPD and various other factors that took her mobility and energy away.  However, she still demanded to take care of herself, lived by herself and up until her death held a license and owned a car, though like I said when she turned 90 she really couldn't drive anymore because of macular degeneration of her eyes.

In her case she missed doing the physical things, she was used to taking care of herself and her house. She prided herself on her ability to do those things and the weaker she got the more frustrated she would get. I actually moved home to help my mother take care of her that last year that she was alive, I drove everywhere and cooked and did as many things as I could for her so that she didn't have too.  I enjoyed helping her, but one day in January of 2010 she looked at me and asked me if she was a burden, how she wished that she could just die because she felt like she had to rely on others to do the most basic things and it was hard for her to admit that she was just not able to do everything by herself. My answer surprised her, I didn't think she was a burden at all, and I actually enjoyed the time I got to spend with her.  I learned things about my life and why I cared about people so much.  In a way, my limitations brought me to the realization that I may not be able to do all the things that a normal male of 40 can do, but there are other things, and that I have found someone that accepts and understands my limitations and loves me anyway makes all the difference to me in the world.  I have channeled my energy and passion of sex into caring and helping others. It has pushed me out there into the world to talk to others about my illnesses, limitations, expectations and how I handle them.  I have begun volunteering and helping others in a way that is rewarding and fulfilling.  However, I have found that being candid with others about my illnesses, and limitations has made it easier for me to accept and move past them.

What I have done is found another outlet for my pent up anxiety and frustration.  I remember Jeanette telling me that it is the simple things in life that brought her pleasure, and she would needle point or crochet for hours.  Since she couldn't carry or lift things anymore, or push the mower or plant a full garden, she took joy in the things she could still do, instead of planting a full garden she planted herb gardens in her window.  Planted strawberry plants in planters by her front door, she would crochet or needle point to keep her hands busy and her mind working on what she was doing. She occupied her time by things that she could still do that made her happy.  The concept I am trying to bring forth to you, is it is possible to turn and find alternative activities to do to compensate for those abilities and things you can no longer do.  I have a great mind and a terrific imagination, and I have figured out ways to compensate for my physical ability with activities and things that I can do.  This helps me rid myself of the anxiety I felt, it also lessened my feelings of inadequacy and by talking about it to others, and writing in my blog has made it something that I can almost accept totally and move on. I still have feelings of anguish over my crushed dream of being made whole, but I think in time those too will pass and vanish.  It also helps that I have found someone that cares enough about me to tell me that it doesn't matter to him, that we will face it together and will work out a solution.  Up until today, I had been keeping it from him, but when I told him my fears, he said the right things, and that it didn't matter that it was me he wanted, that it was me that has inspired him and made him a better person, but you wanna know the truth of the matter, maybe it is that we inspired each other and have given each other hope for a better life, and a happier one then we have known before.

Ladies and Gentlemen, I have looked death in the eye several times this year, and it scared me, but somehow, I knew it wasn't my time to go yet.  But it brought into sharp focus my limitations and abilities, it also made me intensely aware of the fear I had hiding within myself. Just like Jeanette, I had begun to feel like I was a relic, no longer useful or productive and that I wasn't going to be wanted and desired by anyone.  Now, with that being said, those that truly know me can attest that nothing gets me down for long so I have bounced back and I have shifted my focus to what I can do, what makes me happy, what am I passionate about that I can pour my energy and my life into.  I have come to understand that having a terminal illness doesn't mean that you are going to die right away necessarily and that there is life after being diagnosed.  As I said at the beginning of this entry, there are just circumstances and events that are beyond our scope of control that can severely impact our lives and limit our abilities.  When that happens, we can't let the anguish and depression hold us back, we have to face those limitations without fear, using our mind and creativity and imagination to find ways to compensate or even supplement the loss.

Now I am fully aware that there is going to be a period of time when your mind and emotions are not going to deal with this rationally.  You are definitely going to go through the 5 stages of grief and remorse and will have to weather that storm, but eventually after you have passed through that you will find other activities and things that will help you take your mind off the limiting ability.  I have found that humor helps me deal with my situation and allows me to be perfectly frank and candid about my situation.  When I am talking to others, or filling out applications, and it comes to the question of sex, I say well I am a plant, I am neither male of female, I am asexual how would you like me to answer this question.  Or if they ask it another way, I say no not right now I am too sore, but maybe when I heal up we could attempt.  Levity and humor make the situation tolerable, and opens the door for me to talk to others about my illness and how it has actually affected me.  You never know where personal encounters are going to take you, or who else might be dealing with a similar situation and have been harboring the guilt and anxiety within themselves and has had no one that they can talk to or even laugh about it with.  My friends let me tell you that life is too short to stay quiet, get out there tell your story, embrace life and living and trust me you will be rewarded. Both emotionally, physically and spiritually.  I find the greatest joy in meeting new people and experiencing life through their eyes. Because as I have told you before we each feel, experience and see things differently, and if you take the chance to walk in someone else's shoes, guess what you might get blisters or sore toes, but you are also going to have a greater understanding of who that person really is.

My advice to you my friend is don't give in to despair, anguish, anxiety, guilt or any of the other hundreds of emotions that you might be feeling, don't wallow in self-despair and pity, change the variables, change the game, and like I told you yesterday you can change the way you think and react to things.  Find something new and different to do, find a new outlet, hobby or release that you are comfortable with, enjoy and make the change. Again, I will tell you if I can do it so can you.

As always my hopes and dreams are with you,

Uncle B