Someone I know was saying something today about her inability to sleep for the past month or so – a situation that seems to consistently and regularly present itself.  Her words seemed innocuous enough, at least for her, because even though she tries to evoke a very positive attitude, it seems her comments always have an underlying negativity.  It’s as if she writes something positive, it will bring good things.  The strange thing is her writing is based in the holistic, spiritual and ethereal; the getting in touch with our “higher self” kind of thing.  Most people I know, and I concede there are not a lot of them, of that ilk tend to evoke “positive energy” – this person is the exception.  It made me wonder about things, about how each of us views life and its challenges – how we frame our experiences.

Some background, some or all of which you may wish to skip.  The past few weeks were, to say the least, interesting for me.  I guess maybe not a total surprise given they were preceded by some events, which seemed just “run of the mill”.  Just as the month or so preceding my diagnosis was preceded with diminished urine flow, these weeks were similar.  What I didn’t expect though was the terribly difficult time I would begin to have relieving myself culminating with considerable blood in my urine.  The condition progressed with things escalating to the point where I was straining to urinate and in doing so produced even more blood and, often times, pushing so hard I would concurrently void.  In short, it was not a good situation.

As those who follow my writings, you will know I was leaning toward a “doctor free” spring.  I had not gone for the standard December PSA test and actually had decided to leave things be until the next typical check point in March.  With the condition as it was and not improving, I was pretty much forced to visit the urology clinic in the hospital where the doctors who follow me practice.

It was my intention to see one of the head urologist, a man who initially evaluated me and who had seen me one time following.  He is a highly trained and experienced individual with a pretty good bedside manner, at least in my view.  He is also the principal practitioner when it comes to all things surgically related to prostate cancer.  The unfortunate thing was he was out for the month and my regular oncologist felt it paramount I be checked.  So I made the appointment and went to the clinic.

Generally speaking all at the clinic were very nice, save one nurse who I spoke with on the telephone both before and after the visit.  As is standard, at least in my experience, the nurse asked me to provide them with a urine sample.  I explained the challenges with which I was faced and she asked that I try. So I went into the bathroom and worked on producing the sample.  As I expected, I produced very little and also as expected, it was bloody.  The nurse was a bit taken back by my explanation of the “work” it took to produce the sample as well as its color and off to an exam room we went.

After being in the exam room for about 10 minutes a younger doctor, a resident I presume, named Matt C came in to see me.  He asked about my condition and I explained the various events and progressions leading up to my current state.  We chatted a bit and his initial conclusion was to simply send me home.  I further emphasized the extent and duration of the problem and he said he would go chat with his “boss”.  When he came back he said they concluded a catheter was likely in order and asked permission to insert same.  He didn’t inspire me with confidence and so I asked him exactly how sure he was that I needed a catheter, his response was 60% – not very comforting.  Not having even thought of this possibility, I pondered it a little bit and considered several salient points.  Once my consideration was over, it took all of about 2-3 minutes, I consented to the catheter.  In doing so I asked Matt if he was fully aware of the extent of my condition and he said he had reviewed my record.

Now to be clear here, anyone who has undergone even one round of the amount of radiation to which I was exposed (74 gray) will know there is a lot of residual scare tissue.  I explained this to Matt and also added that in the workup for the second round of radiation (54 gray), JR had given up trying to get a catheter into my bladder because of the amount of scare tissue.  As a matter of fact, when JR inserted the catheter, there was a point where he actually pushed through something he called scare tissue in my ureter.  Matt said he didn’t know what I meant by “scare tissue”, saying that what I described is more correctly referred to as a “stricture.  I conceded the point was moot, who really cared what it was called other than his knowing something was in there that impeded the catheter.  With this point I also asked Matt of his thoughts about actually being able to get a catheter into my bladder.  His response was a bit arrogant and unsettling – he said I’d like to think I’m pretty good at putting in catheters given it is my specialty.  The reason I found this unsettling is because most people who are really good at something don’t typically feel the need to brag.

On to the catheter.  So after it was all decided and all questions were answered, Matt went off to get the catheter.  In his absence, I had time to think a bit about the whole thing and I began to question the wisdom of the catheter and upon Matt’s return I told him I changed my mind – he appeared “disappointed”.  After thinking about it a bit I reconsidered and decided to have the thing inserted.

Matt and the nurse made all the preparations and I took the requisite position on the table.  As usual, he inserted a syringe which offered a numbing agent into the tip of my penis.  He bagan the insertion and man, it felt at least as bad, if not worse than, when I passed kidney stones.  He continued his attempt and then stopped because he said he couldn’t get it in on that try.  At this point my whole body was shaking uncontrollably and he inserted some more numbing agent.  After a short recovery period, he began his second attempt and this felt worse than the first, but he was successful in getting it all the way to my bladder.  Again my entire body was shaking uncontrollably and they had me get off the table and sit in a chair.  They hook me up to a leg bag, gave me some instructions and told me to “take some time to recover” before they sent me home which I did after about 10 minutes.  The one good thing was that at this point Matt said I “definitely needed” the catheter – at least it wasn’t for naught.

It took me about 30 minutes to get to the parking garage and into my Jeep where I sat for a few moments to gather myself. I gingerly drove home and stopped at the drug store for the prescriptions I needed filled.  Once home I pretty much collapsed into my big chair and there I stayed.

That night I could not sleep, save for passing out from exhaustion for 10 minutes or so every so often.  The next morning the pain continued and I tried to function around it, to fight through it with the thought it would subside – it didn’t.  I called the urology clinic and asked for the nurse line where I left a message explaining how I thought something was wrong.  I also emailed my regular guys for their input.  The nurse called back and gave me little empathy, treating more like a whining baby than someone in considerable pain.  In explaining the extent of my pain I told her how I sewed a finger and did whitewater with cracked ribs; I hoped she would understand I have a high tolerance for pain – it didn’t work.  Her simple explanation was that the doctor (Matt C) wanted the thing in until at least Monday and to take it out would risk a condition called “clot retention” (a blood clot stops all urine flow).  I asked if there was anything that could be done and she said it would settle down with time.

In the meantime, my urology oncologist (Paul) responded to my email and said he spoke with Matt C.  He concurred with Matt’s diagnosis of “radiation cystitis” saying the catheter was a necessary thing to allow my bladder to settle down.  The good thing was he offered to prescribe a pain killer, which I accepted and that made all the difference in the world.  I’m not quite sure why Matt didn’t offer the same, but then he doesn’t know me like Paul.

So, the whole thing of radiation cystitis was kind of a new thing to me.  As you may have guessed, it is a side effect of radiation treatments.  When you consent to radiation therapy, there is a host of side effects explained to you as being possible and quite honestly, I do not recall this one every being included in the list.  I suppose they may have not used the exact term, choosing instead to classify it under the general category of “bladder damage”.  The other interesting thing I learned is that this particular malady can come at anytime, without provocation and will be with me for the rest of my life.  None of this is very comforting, but in my view, just another thing.

Back to my friend.  Now for the past several years I’ve also been a bit sleep deprived with the only remedy being to dehydrate myself.  My friend says her inability to sleep is caused by her mind running on and on about different things, in this life or another.  I consider her issues, those challenges communicated and find her dilemma to be borne of her own making.  We all seem to have those days and times when life’s challenges prevent our mind from finding the peace necessary to rest.  I think about how she tries to present things in a positive light but is unable to void the inclusion of negativity.  I think about how attitude enables us to overcome life’s challenges, which if afforded the opportunity to become our focal point, can consume our thoughts.  Many see me and consider my situation quite unfavorable; they wonder why or how I can sustain a positive outlook.  I think for me it is rather simple, it resides in a refusal to allow my condition to dominate my thoughts, to control my life.  I think about people such as my friend and count my blessings for while my disease my take my life, I’ve been blessed with the ability to retain perspective, to put it in a place that will allow me to life my life, to be happy.  I would hope the same could be said for my friend, but as it would seem, she is not blessed with this ability and she succumbs to an even greater disease.

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