We spend a lot of time dwelling on the physical nature of our illness.  There is the horrifying mutilation of the body that some of us must endure.  There are the therapies, themselves a poison to us.  There are the tests and the inevitable and worrisome waiting for results which will give us a glimpse into the future.

The physical being is infected with cancer.  Cancer is a mutation of our bodies, a mutation seemingly bent on destroying the very host which gave it life.  Why I got cancer is really of no interest to me.  The reality is that I have it and have so far survived all that has been thrown at me.  Yet the physical aspect does not complete the picture of what cancer does to us.  We are forever scarred physically by cancer, doomed to live the rest of our life no matter how long that may be always wondering when we will ultimately succumb to it and die.

The destruction cancer brings is not limited to our physical bodies.  It also brings about changes in the intangibles of our mind, our thoughts, our desires, our fears, our very spirit.  All is forever changed by the diagnosis that we have cancer.

Marvina and I were married on December 19, 2003.  In February of 2004 the cancer was found.

Marvina and I had been together for some time before we were married.  Years in fact.  She was and still is, the one true love of my life.

I think about that a lot.

I am absolutely sure that Marvina is the reason I am here today.  There is a dichotomy in Marvina that captures my attention.  She is at the same time an incredibly strong yet weak woman.  That probably doesn’t make much sense but it is a part of her.  There are many facets to her.  Each one unique and powerfully attractive.  Yet is was her strength of will that kept me here.  Seven words spoken to me while I hovered in and out of consciousness after my surgery brought me back from an abyss that I was ready to sink into.  “Don’t go.  I’m not finished with you.”  So I returned.

But I was to soon learn that I was no longer a whole entity.  I was missing a couple of organs, had this horrid hole in my abdomen and a plastic bag forever glued to my skin.  Worse, a key element of my expression of love to her, my ability to complete a physical union with her, was no more.

Actually, that isn’t true.  There is a new paradigm to be explored.  There is always the possibility of completing a physical union but really, is that truly the definition of expressed intimacy between two human beings?  I no longer think it is.  Instead there is a new and unexplored horizon of possibilities laying in wait for us to begin poking around in, no pun intended.  Yes, the days of the rapid ramping up of physical want, the frantic struggle of union and the slow descent afterwards may not be what it once was but nothing, absolutely nothing is impossible once self-imposed roadblocks are removed.

Marvina once told me that when my cancer was first found she had morphed from the role of wife and lover into that of caretaker and that she was unsure whether she could change back.  This yet again is an example of the tertiary damage done to people when cancer presents its ugly self.  Your closest, deepest relationship is changed.  Maybe not forever but still changed.

It isn’t all that bad though.  I have re-discovered something that I, like most of us, loose over the course of time.  I learned, no, I relearned that the simple act of kissing Marvina is itself a singularly wonderful and very satisfying moment.  While we certainly kissed throughout our relationship both before and after the cancer, the kiss that I speak of is the deep lingering kind that leaves you breathless and wanting more.

I’ve also rediscovered the warmth of her.  This one may not make a lot of sense when one considers that we have been in close proximity for years and then ponders how I could miss the fact that she emits heat.  But it isn’t that kind of heat that I speak of.  Well it is but it isn’t.  I guess where I’m going here is that I have become aware, once again, of the warmth of her touch or that differing parts of her body have unique heat signatures.  This was all previously discovered when we first came together.  A moment of exploration where we learned more about each other then all that we had spoken of before.

Intimacy is still there.  It just isn’t built around the act of coitus.  Intimacy as a total sharing of ourselves with each other and savoring each and every important morsel.

We change as we grow through life.  Priorities are different.  Evolution.  But somehow along the way we loose sight of what really is important.  Somewhere along the line we begin taking things for granted.

I no longer take it for granted that I will be alive tomorrow.  I can’t see into the future.  I may live another ten, twenty even thirty years or I could be run over by a bus tomorrow morning.  I save tomorrow for tomorrow.  I have today, the here and now to focus on and savor.

Yes, cancer changed me physically and it changed me psychologically.  So did it inflict the later on those who love me.  But that change brought me the gift of open eyes, eyes that see what is and is not important.  Can I be intimate with my wife now?  Yes, I am every minute I am with her.

Hopefully you read the first of this two part posting titled “What’s is like?”  While I’ve posted a lot about my cancer and the therapies I’ve been subjected to, I’ve not paid a lot of attention to helping you understand what it’s like to live with the results of my cancer.  That’s what I’m trying to do here.

In my previous post of this series I touched on the events leading up to the discovery of my cancer, the surgery and what I have to live with now in my post-surgery world.  While re-reading my prior post I note things that I left out.  Not intentionally mind you, it’s just that there is so much to talk about.  And while most seems pretty grim there have been humorous moments along the way.  I may save those stories for later as being able to laugh is, in my opinion, a key piece of a healthy physical and mental recovery.

But back to it.

I think I did a reasonably good job explaining my post-surgery physical self.  To briefly summarize, I don’t have a bladder anymore.  Instead, I have a hole in my abdomen with some new internal plumbing that allows my body to shed urine.  I now lack some of those taken for granted feelings most everyone else has.  I miss waking up in the morning hard, not from sexual arousal but from a real pressing need to pee.  I miss the almost visceral pleasure of the act of urinating, the immediate “ahhhhh” moment one feels when the pressure is relieved.

Disposing of urine now is a pure mechanical act of opening a valve, waiting for the bag to empty and then closing the valve.  I don’t need the sound of running water to encourage me to go.  Assorted stimuli that affect a lot of people that way no longer has any effect on me.  It’s all just background noise now.

While I’ve lost some of the things we don’t really give thought to as mentioned above, I have added some new items to my restroom choreography.  For example, when using the restroom, no matter what for, I now perform a quick check of the fabric covering the wafer that is adhered over my Stoma.  This serves two purposes.  First and foremost is that if I detect any dampness then I know the usefulness of current Urostomy bag is about done.  The seal is breaking down and if left unattended a leak will inevitably appear.  Perhaps not immediately but soon.  Simple put, it’s time to change.

Secondly I check the fabric bandage type material that covers the wafer itself.  This material also adheres to the skin around the wafer and is used to help hold the wafer in place.  I have noticed that the adhesiveness of this material is not as resilient as that of the wafer itself.  I also know from experience that when this material begins pulling away from the skin it can, if not attended to, shorten the life of the Urostomy bag.  When I find it coming loose, and for me that’s almost always the top and left edges, I apply a temporary repair by using some medical tape to re-secure it to my skin.  It is not a permanent solution but it will help extend the bag’s use through my target seven days.

When I first started wearing these bags they were quite uncomfortable.  There was a feeling that the skin of my abdomen was being constantly tugged at.  Eventually I got used to this feeling and it really no longer bothers me.  Other new post-surgery feelings do get my attention though.  Itching or irritation around the site always draws my attention.  Either can be a sign that the wafer’s seal is breaking down.  Urine, if not cleaned off is a skin irritant.

And then there’s the body hair that gets trapped under the wafer.  When I first started wearing the bag we would try to shave the area around the stoma thinking that this would give a better seal for the wafer.  Actually that isn’t the case and doing so only worsened things overall.  Eventually I listened to a nurse and stopped attending to the hair and sure enough, over time, the body just naturally stopped growing hair at that location.  In addition, a kind of callous has formed, hardest along the top edge of the area surrounding my Stoma.  I think this is likely the result of the tugging sensation I talked about earlier itself the result of my clothing rubbing and pulling at the bag.

Physical changes.

The surgery needed to remove the cancer from my body was by definition radical.  Let’s face it, remove a major organ, particularly one where there isn’t a twin to take over the work, well, that’s pretty radical.  My cancer was classified as Stage IV.  This meant that the cancer had likely began on the outside of my bladder, was invasive, i.e. grew through the bladder walls into its interior, then grew out the other side and effected nearby organs, specifically my seminal structure.  So, along with the removal of my bladder the surgeons removed my infected prostate gland and a significant amount of the seminal structure.

The good news, of course, is that they got most all of it.  They clearly didn’t get it all since the cancer returned five years later.  They expressed that concern after the first surgery, a concern based on the fact that the cancer had invaded the seminal area and its high concentration of vascular structure.  In other words, there was concern that the cancer had spread to my cardio vascular system and had migrated through my blood stream to other parts of my body.  However, the margins tested clear, margins being samples of lymph nodes in and around the affected area.  So I was good to go.

That being said there was a side effect of the surgery that both myself and my wife hadn’t had time to assimilate.  Namely, with the amount of surgery performed in that area of my body and the removal of my prostate gland I had, in effect, been rendered impotent.  Of course I couldn’t produce semen anymore or more accurately couldn’t deliver it.  I still produce sperm it’s just that there is no way to deposit it so-to-speak.  Worse, at least to me, I was unable to develop an erection.

Sex had been an important aspect of Marvina and my relationship.  It certainly wasn’t the most important part of what is “us.”  It was just a part that made it fun to be us.  I’m a guy, I like sex.  If I said otherwise I would clearly be misleading you.  Marvina is a woman and she too likes sex.  One part of our attraction to each other is how much we enjoyed sex together.  A small part yes, but an important one.

Soon into my post-surgery recovery my thoughts finally settled on what I was capable or not capable of doing.  Initially my concern was that I had this Stoma thing and a plastic bag glued to it that would be a distraction during our most intimate relations if not a complete turn off.  Silly me, that was the least of my worries.  I couldn’t get hard.

No amount of coaxing, nothing, seemed to get the engine started.  Forgive the metaphor but I don’t really know how better to explain it.  Surprisingly, and I remember hopefully, I discovered through masturbation that I was able to have an orgasm.  Granted a dry one, remember, my tubes had been cut, but an orgasm none-the-less.  The really weird part was that the orgasm came without an erection.  I remember at the time thinking that if I could do that then I just needed more recovery time so that the erections would return.  I remember getting partials and getting excited thinking that finally…but no, it was not to be.

I talked it over with my Urologist.  He started me on the usual pharmacological therapies.  First was Viagra, then all the rest.  None did anything for me.  I might as well have been taking a placebo.  Then he set me up with a representative from a company which manufactures a therapeutic device that helps men like me achieve an erection.  It’s a pump.  I was told to use it at least three times a day in a set routine.  Pump it up, release it, pump it up, release it, over and over.  I was told that eventually I might regain the ability to gain an erection on my own but in the meantime the pump would allow me to produce one capable of, in the words of the representative, penetrating any opening in the body.  Okay, TMI, but you get the point.

Using the pump is a tad clumsy and doesn’t necessarily contribute to an erotic/romantic moment.  It’s one thing to pause in physical play long enough to put on a condom but it’s something else entirely to pull out a kit, put together this device, get it ready, then inflate myself with a hand pump.  To me that didn’t seem all that romantic.

Maybe it is psychological.  I mean, what was “normal” in the past just wasn’t possible anymore.  Perhaps what we’ve had to face is a new paradigm, a new way of looking at intimacy.  A vision not from the perspective of what is no longer possible but instead what truly is possible.

I have criticized my post-surgery care in the past and this particular area is one where the health care system really dropped the ball.  Counseling of some sort would have been very helpful for myself and my wife.  Some help re-visioning our physical relationship such that we could remain faithful to that part of our relationship would have been a great help.  But no, there was none.

I remember bringing up the subject of an internal pump or some other kind of prosthetic device to address what appeared to no longer be an option.  I also remember him telling me that we would save that as a last resort while we worked our way through all other options.  I guess it’s time to bring it up with him again.

I suspect that his reluctance to discuss it in the past was him simply being pragmatic based on the statistical expectations of my survival.  Upwards to 80% die within months after being initially diagnosed.  Why put someone through the trauma of another major surgery when they are likely to die shortly afterwards anyway?  Makes sense to me.

But I’m over five years out now.  Actually I’m closing in on six years now.  Yes, the cancer returned after five years but it is gone again.  And remember, five years passed.  I didn’t die within months, I survived.  So perhaps it is time for me to once again bring up the idea with my Urologist.

I clearly don’t understand why there wasn’t a holistic approach taken in the first place.  Granted the survival rates were staggeringly low there is still the possibility that the patient might well beat the cancer in terms of years rather than days or months.  So why, when performing the original radical surgery, why wasn’t the option of installing a prosthetic device given as part of the initial surgery?  Even if only to install the plumbing portions of the device and hold off on the actual internal pump and reservoir we would likely have been ahead of the game if and when it came time to complete things.  Had the surgeon performed some initial groundwork I may have been facing some relatively simple and low risk surgery rather than the major undertaking that I think is now required.  Of course I might be off here given that while I understand the mechanics behind an internal device I really don’t have knowledge of the installation requirements.

I know that exposing intimate details of my life and physical state opens me up to ridicule.  But I feel it important though that others going through or soon to go through what I’ve been through understand what is in store for them.  I did not have the luxury of the knowledge I now have before I went into surgery.  Things were a rush and honestly we were more focused on my survival rather than a single aspect of our life like sex.

Survival still is a priority and one we pay a lot of attention to.  But we are where are today and perhaps it is time to reach out for possibilities.

I’ll wrap this post up here with a promise, or warning if you prefer, of another post in this series.

I’ve talked about my cancer quite a bit and I’ve touched on some of the damage it did to my body.  Yet it occurs to me that I haven’t spent time talking about what it is like being forever changed by cancer.  Maybe it’s time to try.  To get there though let me recap some of the time line leading up to the discovery of my cancer.

I was diagnosed in 2001 as having IgA Nephropathy, a somewhat rare and incurable autoimmune disorder that specifically affects my kidneys.  There are a number of resources on the internet where you can read about this disorder.  I may be over simplifying but basically IgA Nephropathy is slowly destroying my kidneys.  Statistics, something I don’t generally give much thought to suggest that in the affected group somewhere between 25-30% will suffer total renal failure at some point in the future.  Again, I don’t invest a lot in statistics, after all upwards to 80% of those diagnosed with the cancer I have die within months of its discovery.  Since I’m six plus years out one might say that “statistically” I am a survivor.

There really isn’t any therapeutic treatment for IgA Nephropathy.  Instead there is simply monitoring the function and health of my renal system and the organs directly effected by it, namely my heart.  Monitoring consist of blood and urine labs.  My Nephrologist primarily looks at the levels of creatinine in my blood stream.

Creatinine is the natural product of the continual breakdown of muscle in the body.  It is a waste that is filtered from the blood by the kidneys.  The amount of creatinine in the blood stream is a reasonably accurate marker for how efficient the kidneys are.  Typically a “normal” human has between .5 and 1.2 mg/dL of blood.  With a reduced kidney function, the result of IgA Nephropathy for example, the amount of creatinine rises above that range.  My creatinine level generally hovers around 1.5-1.6 mg/dL.  I have been told that I would be considered in renal failure if my creatinine elevated to 3 mg/dL or above.  There is a phase I would have to transition before total renal failure which would involve me receiving dialysis.  I suppose that once there and certainly as I approached total renal failure we would begin discussing an organ transplant.  That would certainly extend my life and return me to some form of normalcy but the unfortunate reality is that I would still have IgA Nephropathy and I would begin the downward spiral yet again.  Still, there is the reality that I could live a normal life span without degreasing anymore than I have at this point.

So, there I was happily living my life and submitting the occasional blood/urine sample for analysis when the results came back showing that my creatinine had spiked to 3 mg/dL.  It was decided that I had some kind of blockage or infection which was causing urine to back up and affect my kidney function and that the solution was to have stints inserted in the ureters connecting my kidneys to my bladder.

We were told that the whole procedure would last maybe forty minutes and would be on an out-patient basis.  Essentially I would check into the hospital, be prepped and put under general anesthesia while the procedure was performed.  In my humble opinion a good thing that I would be put under since installing the stints would be done through my urethra, clearly something I didn’t want to be awake for.  We were told that after a brief recovery time I would be sent on my merry way.  Right.

The forty minutes turned into something like four hours.  Word eventually reached my wife that during the procedure they had encountered something, I can only presume they used the word tumor with my wife.  They had spent the bulk of the time cutting as much of it out that they could get to, given the tight quarters they were working in, and they installed tubes directly into my kidneys through my back.  These tubes carried urine to plastic bags attached to my thighs by Velcro straps.

I awoke in a hospital room with the usual IVs attached and a very terrified wife.  If I recall correctly this was on a Friday and the Urologist who had performed the procedure had sent samples of the growth to pathology for analysis.  Of course, being a Friday the results would not be back until the following Monday.  So we had to wait through a very long weekend struggling with all the emotions that were exploding.  Ultimately the diagnosis was cancer and the solution was to remove my bladder.

So that is what we did.

Now I have a hole in my abdomen, just to the right of my navel.  Peeking through that hole is something called a Stoma.  This is the end of a piece of my small intestine that now connects to my kidneys and conducts urine out of my body and into a plastic bag, called a Ostomy Bag, that is stuck by adhesive over the Stoma.

I have learned that there are many kinds of Ostomy bags.  In my case it’s called a Urostomy bag given it receives urine output.  There are Colostomy bags that receive solid waste.  I don’t have one of those.

The construction of a Urostomy bag is pretty simple.  There is a hard plastic wafer with a hole in the center that adheres over the stoma.  The diameter of the hole depends on the size of the Stoma.  A plastic bag is either snapped onto the wafer with a sealing ring or it is constructed as a complete one piece system.  I’ve used both types of systems but currently favor and use the later.  The wafer part of the bag comes in a variety of shapes too.  Since I have a belly I use a wafer with a slight concave shape to it.  This better seals against the skin around my Stoma.  I tried the flat style right after the surgery with pretty much negative results.  Lots of leakage and the need to frequently change bags.

The bag has a little valve on it that opens and closes allowing me to empty the bag when the need arises.  The casual observer would think that I was simply urinating when I am emptying my bag as I pretty much go like a guy normally goes, either standing at a urinal or in front of a toilet bowl.  I no longer have any sensation of needing to go to the bathroom like most of you do.  The only way for me to know is to check how full my bag feels under my clothing.  That means I’ve developed the habit of lightly patting my lower abdomen to check on how full my Urostomy bag is.  The bag hangs under my pants above my groin.

I’ve worried that people seeing me do my “check” might think that I was frequently touching my genitals.  That worry hasn’t manifested itself in the sense that, to my knowledge, anyone has complained.  Still it’s something that, as weird as it sounds, I’m both conscious and unconscious about.  It’s an automatic thing yet I worry.  I know, that doesn’t make a lot of sense but it’s there.

My Stoma as I mentioned earlier is just to the right of my navel at the same level as my navel.  I used to wear my pants with the waistline below the navel.  I don’t think I can do that anymore since I fear that the waistline my pants would somehow crimp my Urostomy bag.  With that concern in mind I wear my pants pulled up such that the waistline is just above my navel.  This hasn’t had that much of an impact on me in terms of what size pant I purchase.  That being said I am careful to try on a new (to me) brand to check the pant’s rise.  Some pants have a short rise and pulling them up to clear my Stoma results in an overly snug and uncomfortable crotch fit.  There is also the reality that when they removed my bladder and prostate, the surgeons clipped the muscles or tendons that my body used to regulate the temperature of my testicles.

Okay, Anatomy 101.  The male genitalia regulates optimum temperature of the testicles so that we produce healthy active sperm.  Too cold or too hot and our production, or fertility falls off.  So in the process of every day life our testicles lower or rise into the abdomen depending on the need to either cool or warm them.  Since the structure used to accomplish that has been severed my testicles are now forever lowered.  Crotch fit is, as you might now understand, important to my comfort.

This was one aspect of my post-surgery self that took a bit of getting used to.  During the warm months it wasn’t that huge of an issue for me.  However, during cold months sitting on, say a cold cement bench, can be an eye opening experience.  As a result I have, while at work, subconsciously developed the habit of for the most part always standing.  Co-workers have commented on this to me noting how, during breaks, I generally don’t sit down.  We work on our feet at my job.  Sitting isn’t a significant part of the job.  During breaks I remain standing both to avoid any discomfort I might feel because of my new physical configuration and to avoid my leg muscles cramping up.

Is the Urostomy bag permanent?  Well, the condition requiring use of them is but the actual bags themselves are disposable and require regular changing.  The bags are relatively expensive at roughly $15 each.  At first I was changing bags almost daily and because I was using the wrong bags I often had to put on a new bag multiple times a day.  Once fitted with a bag that conformed to my body though, the need to change bags went to once a week.  I could stretch the time out longer if I wanted to.  I’m fortunate in that respect since leakage has become a very rare event now.  My health care providers insist thought that I do not go longer than a week between changing bags.  They tell me that the skin under the adhesive wafer and the Stoma itself need to be cleaned and exposed to air in order to remain healthy.  So I put on a new bag each week whether it needs (to me) changing or not.

How does this work?  Simple.  I do it while showering.  I shower each morning before work.  On a typical day I place a piece of plastic over my Stoma and Urostomy bag, held in place by tape, to serve as a kind of raincoat for the entire assembly.  Moisture is the enemy of the adhesive bonding the Urostomy bag to my body so I try to protect it while taking a shower.  On days that I am changing bags I set things up by placing a fresh bag out and ready to apply, empty my current bag one last time then climb into the shower with a plastic bag.  I remove my Urostomy bag, place it in the plastic bag, tie it closed and toss it into the bathroom’s trash can.  I then enjoy a shower and carefully clean around my stoma.  Yes, urine still squirts out.  I can’t control that anymore but I am in a shower and a little urine doesn’t hurt anything.  I’m cleaning everything off anyway.

Once the shower is done I dry a hand off, grab a gauze I’ve left close by to hold over the Stoma while I dry off the rest of my body as best I can.  I need to hold the gauze against the Stoma in order to catch any urine that might be excreted.  Hey, don’t want to mess up the new clean me right?  After I’m reasonably dry I use a hair dryer to dry the skin around the Stoma and then slap on the new Urostomy bag.  Once that’s accomplished the rest of my daily bath routine is just that, routine.

When I first came home from the hospital I was both terrified and horrified by my new Stoma.  So much so that I was pretty much helpless when it came to maintaining it.  I relied entirely on Marvina to remove, clean and place a new Urostomy bag.  I was afraid to even touch it.  I suppose I was afraid that I would feel pain or somehow damage it.  That there almost always is bleeding during the change only served to make me even more fearful.  Bleeding is normal though.  The Stoma, as mentioned above, is the end of a small piece of my small intestine that they used to construct the conduit.  This, like every other internal organ isn’t designed to be exposed to the world hence the capillary structure that keeps it healthy isn’t protected by a resilient layer of skin.  That means it’s easy to break the capillaries and cause a minor amount of bleeding.  Any bleeding though quickly stops once a new bag is in place and I’m no longer actively touching the Stoma.  Now I am a pro at changing bags and can do so in a snap.

I used to worry a lot about leakage at work or when I’m out and about.  That was because of all the problems with leaks that I initially experienced.  Such was my worry that I carried a spare bag with me everywhere I went.  Just in case.  Over time though my confidence has grown to the point where I no longer carry an emergency bag all the time.  Do I still experience leaks?  Rarely.  Almost always they occur during sleep when I toss and turn and somehow break the seal between the wafer and my body.  The other leak experiences have almost always happened towards the end of a week’s wearing and have happened at home.  I’ve had one leak at work which I caught early and quickly took care of.  Marvina had to bring me a fresh pair of pants and underwear since there was some minor wetting.  That event was almost four years ago.  Since then I have had no problem with leakage while out, either at work or socially.  I am, of course, acutely aware and constantly check for leakage when checking how full the bag is.

I also used to worry a lot about odor.  I still do.  Occasionally I will ask Marvina if she smells anything, meaning urine.  She has a really good nose.  Marvina always reassures me that she does not detect any odor at all.  I suppose I just need the reassurance from her and she is very good at giving it.  She will also immediately spring into action if she detects a problem before I do.  She’s a good egg that way.

So, what do I do at night when I’m sleeping?  I can’t keep waking up to check how full my bag is.  Well that’s an easy one.  Remember the valve I spoke of?  The one I use to empty the bag?  Well beside the bed I have a plastic bottle with a long rubber hose.  One end of that hose, naturally, attaches to the bottle.  The other end snaps onto the valve of my Urostomy bag.  When I go to bed each night I snap on the hose, open the valve and go to sleep.  As I slumber any urine produced by my body flows freely into the bottle next to the bed.  I just have to reverse the process when I wake up and make sure to empty the bottle before I go to bed the next night.

Marvina has, light heartedly, complained that having the bottle gives me an unfair advantage over her.  Remember, I don’t have any sensation of needing to go to the bathroom.  She does though and on evenings when we’ve perhaps imbibed or consumed a lot of fluids she wakes in the middle of the night and  has to climb out of bed and go to the bathroom.  Me on the other hand, I sleep right through it all.  I guess I could call that an advantage of having a Urostomy bag, uninterrupted sleep.  Well, uninterrupted as far as having to pee is concerned.

So there you have it.  What it’s like to live my life.  There is, though, another part of my story that I will speak to in another post that has been affected by my new body.  Until then…

Last Friday evening Marvina and I witnessed the marriage of our son Alex and our new daughter-in-law Jamie.  It was a wonderful moment and enjoyed by all attending.  I may be biased, a bias I’m sure the other parents share as well, but Jamie and Alex are a lovely couple.

Jamie and Alex have already been sharing a life together.  The marriage simply cemented an already strong bond between the two of them.  They have already given us a granddaughter, Kaylynn.  It would be pure speculation on my part but I wouldn’t be surprised if they presented us with another grandchild soon.

I was afforded the great honor of being Alex’s best man.  I am sure he could have chosen another.  That he chose me only underscores the bond that has grown between us.

Alex has not had the easiest life to live yet most, if not all of the challenges facing him have been his own creation.  He has persevered through each of them and is working through the greatest even now.  He is a strong and determined young man who will both conquer any challenge thrown in front of him and be successful in life.

Now Alex has the incredible strength of Jamie to help.  She is a beautiful young woman and has gifted us with an equally beautiful grandchild in Kaylynn.  We, Marvina and I, have gained a fine daughter.  We know that we have to share her, and Alex, with Jamie’s parents and we will, but that sharing does not lesson the deep feeling that she is our own now.

Congratulations Mr. and Mrs. Alex Hirni.  Have a wonderful and grand life!

I started an entirely too brief one week vacation from work today.  There are no plans to actually go anywhere in the sense of a vacation as most might think of one.  In my case I took the time off to coincide with our son’s wedding.  The time off allows me to enjoy the moment and gives me a much needed break from work.  It also allows me time to reflect on our son and the brief life we’ve had together.

Marvina was a single mother when I met her, Alex her only child.  About now is where my male fuzzy memory kicks in but I believe Alex was twelve or thirteen when I met Marvina.  A clumsy age for all of us, prepubescent but wanting to be an adult without really knowing it.  We may have used the adage “twelve going on twenty-one” or something similar to describe him.

To say that Alex was a handful would be immensely understating things.  Then for an adult male to enter his life at that precise time, a life previously encompassing only his mother and himself well, we can simply say that it was a huge and difficult change for him as well as all of us.

I had the great fortune of actually getting to learn about Marvina and Alex well before I ever physically met her.  Ours was a very long distance relationship that began in the ethereal world of the internet, moved to the telephone and ultimately the difficult to arrange meetings.

Marvina had gone into some detail in advance about the challenges centering on Alex.  We talked about a wide variety of topics.  Some may well have been troubled or even put off by the difficulties to come but I wasn’t.  Even though I hadn’t met him the potential I heard in her voice or read in her letters led me to believe that I would enjoy Alex and might learn to love him as I would if he were my own son.

Our first meeting wasn’t a spectacular success, at least not from my perspective.  Alex immediately rebelled at the notion that someone else might hold his mother’s attention, that he would have to share.  I don’t think this was a conscious thought on his part but he was not a happy camper.

Ultimately Alex and I persevered and grew through our differences and, at least I think, became all the closer.  Each butting of the heads only served to strengthen the bond I now feel towards him.  That our life seemed to be in a constant state of combat, not exclusively with each other but often involving outside forces, cemented in  me a belief in the importance of valuing and enjoying each day, each moment for its singular gift to my greater life.

Alex has made mistakes and to my great pride took responsibility for them.  His latest, the most serious, landed him in a court ordered state correctional drug rehabilitation program.  Those were among the longest one hundred odd days of my life.  I missed his goofy self.  I missed being annoyed with his foolishness.  I missed the love and care he has for everyone that he tries so hard to hide behind a tough guy veneer.

Alex has grown into a good and gentle man.  The potential I saw in him as I listened to Marvina’s stories have come true and the most amazing thing to me is that the best is yet to come.

Tomorrow Alex takes a huge step in life when he weds his wife-to-be Jamie, mother of his child, our granddaughter.  Even after all the fights, all of the tough and uncomfortable teen years, I am to be his best man.

I am honored and moved beyond words.  I will enjoy this moment.  I will enjoy it very much.

We’ve all heard the proclamations “I have nothing to hide!”  I seem to hear it a lot with politicians and when I do my antennas begin to vibrate a warning.  “Where there’s smoke there’s fire” seems appropriate.

I wonder why people, corporations and government continue to try feeding us that drivel.  Occasionally, when the heat is on, the hider falls into a series of steps that assure us that they are being completely “transparent” for us.  States, counties and assorted local governments have, in the past, rapidly adopted so-called “sunshine” rules.  The image of cockroaches running for their life when the sun hits them quickly comes to mind.

But so what?  We end up with a sunny place where we can observe everything clearly right?  We’re experiencing transparency right?  No secrets, no hidden agendas, all is well with the world…except…where did all those pesky cockroaches go?

I used to shrug off secrets.  For the most part I was pretty much apathetic regarding secrets.  I didn’t really care.  Most of the secrets I became aware of really didn’t impact me which in turn created a very false sense of security.  Nothing, absolutely nothing is secure.

I remember, right before they found my cancer, how I had gone for a routine doctor’s appointment with my Nephrologist and the required labs.  Marvina was at work so I came home alone, oblivious to the train that was about to run me down.  I remember the doctor’s office calling me, my doctor mind you, asking me for Marvina’s work number.  Hey, I didn’t suspect a thing, after all the visit with the doctor had gone pretty well as far as I could tell.  I gave them her work number and sat back in blissful ignorance.

In short order Marvina walked in the front door and announced “There’s been a change of plans.”  It was on.  Off to the hospital, right now.  Surgery, to insert some stints and oh look, cancer.

Why my doctor wouldn’t tell me directly, why they resorted to calling my wife and let her drop the bomb in my lap I will never know.  I’ll never know because I won’t ask.  At this time in my life the point is moot anyway.  So why bother stirring things up.  BAM!  In went the nail as a new me began to be constructed.

Lesson learned you know.  Can’t really trust the doctors now.  That’s a shame because I do like my doctors.  But honestly I won’t trust them any further than I can throw them.  That probably explains the amount of quality time I spend on the internet looking up and reading up on stuff they tell me I have or whatever.

There should be a kind of symbiosis in a relationship.  When a doctor withholds information the doctor undermines the trust that should be the bedrock of the doctor-patient relationship.  When one or the other or worse yet both parties shut out the other then transparency is lost.  Not good.

I work for the Transportation Security Administration.  I am trained to be suspicious.  BAM!  In went another nail.  Actually there have been many nails hammered into the new me.  I know this because I miss the old dumb me, blissfully ignorant of what’s going on around him but none-the-less very happy.

Did I mention that I hate secrets?  I was told the other day that my security clearance was being elevated.  Why I honestly do not know.  But now I will have (more) secrets to keep from others as they keep their secrets from me.

Innocence lost?  Yeah, I guess so.  Fucking secrets.

Today is Marvina’s second day back to work after recovering from her bout with Serotonin Toxicity.  Truth be told she hasn’t fully recovered but has to the point where she could go back to work.  Granted her (new) doctor released her to return to work on a “trial basis.”  That makes me suspicious that there are withdrawal symptoms yet to come.  I imagine it weighs heavily on Marvina.  I’m afraid for her but my fear lessons each day.

As for me I’m feeling pretty good.  Much to my dismay I’ve gained back some of the weight I had shed when we joined the gym and started working out.  When Marvina became ill we both ceased going to the gym putting all our energy and attention on getting her better.  She gained weight too despite working out.  This I researched and discovered was one of the side effects of the Serotonin Toxicity.  We are going to return to a workout schedule soon.  My guess is that becoming active again will serve to, naturally, loose weight as well as blow off some of the stress we find ourselves under.

I have reduced the dosage of the sleep aids my Oncologist prescribed for me during my chemo therapy.  I have halved the dosage and will halve it again starting next week.  I’m finding it easy to get to sleep and seem to be sleeping longer too.  I’ve noticed that Marvina is also able to sleep too.  It’s a slow process but we are moving towards some semblance of normality.  I’m not sure we will be medication free but we’ve certainly learned to respect what medications can do to us and will cautious to accept them in the future.

Marvina seemed pensive during her lunch hour earlier this evening.  We sort of hung out, poked around a book store and just sat in the car and talked.  We were both yawning a lot and might well have been able to push the car seats back and taken a nap.  I’m making dinner later when she gets off work.  Fish, a veggie and a salad.  Nothing fancy or heavy as I’m guessing we will be in bed soon after eating.

Lots going on just now.  Our son is getting married next week.  I’m his best man.  We have a rehearsal the Thursday of next week and the rehearsal dinner we have to take care of.  Details details.

Oh well, there will be time to rest later.

Marvina returned to work today.  She had been off work on short term disability since early September, just about two months total.  A lot happened in that time which I’ve talked about in previous posts.  Suffice it to say Marvina is acting out her own personal Phoenix rising from the flames…okay, maybe a bit overly dramatic but a surprisingly accurate analogy.  She crashed, she burned, she rises again.  That’s my baby.

I can’t begin to explain how good she appears now.  She had a bit of anxiety this morning which rolled her out of bed early.  “I was anxious” she said.  First day back at work after an extended time off would make anybody anxious.  I know it would me.  Yet even then she proudly held up an empty package of cigarettes and announced that she had reduced her consumption to half a pack per day and was close to quitting.  Of course that puts me on the spot since I plan to quit with her except that I will do it cold turkey, as they say.

“Wait!” you say, “You smoke?!?  What about the cancer???”

Yes, I smoke.  I could be glib and shrug your question off with “What’s it going to do?  Give me cancer?”  But seriously yes, I do smoke and yes, I am going to quit.  I suppose quitting now would be something akin to buying car insurance after the wreck.  I can’t offer any excuse for smoking and freely admit that I began, at age 18, for the dumbest of reasons which I won’t go into here.  That being said I can assure you that I don’t like smoking anymore.  I am addicted to them yes, but I find no pleasure in them like I used to.  They have become a habit that I plan to loose, side-by-side with Marvina and even though I’m still fighting cancer I know that quitting will be nothing but good for me.  Along with a lot of other changes that are about to land or re-land in our life.

One significant change is with Marvina and the effect her health has on me and my own.  I worry a lot about her.  She is not far from my thoughts constantly throughout the day.  I was particularly concerned with the medications she was gobbling down at the direction of her (former) doctor.  That all changed when she had her brush with Serotonin Toxicity.  Traumatic it was yet it was a life changing moment for her and I.  Most importantly it helped her change direction in a good way.  Yes, she still has all the worries and concerns swirling around in her pretty head that she’s always had but she’s taken a big step at governing them rather than letting them govern her.

Her feeling better in turn makes me feel better, sort of.  A big weight has been lifted off me.  I still worry about her but the intensity of the worry lessons each day in which I see improvement in her.  She feels better, I feel better.  Conversely when I feel better she feels better.  This is a good circle to be caught in.  We might simply explode from feeling so good.

Yet as my worries of her dissipate worries about myself return.  I hurt.  I hadn’t noticed it in the past, but I have a mostly very low level of constant pain.  Right now the pain is centered in my shoulders and neck.  There is also pain in my right hip and down the outside of my right leg.  That particular pain can be quite intense and feels as though the muscle, particularly my thigh muscle, is sheering away from my thigh bone.

I suspect a lot of this pain is the result of bad posture, particularly while sitting and sleeping.  I think we need new furniture for the living room (sitting) and a new bed (laying down).  I expect that a lot of my pain will go away with new stuff.  At least that’s my hope.  Of course if the pain remains after that then I will probably really start worrying and I will likely give my doctor a call.

In the meantime I’m going to enjoy the good feeling I’m having from watching Marvina get better and I’ll do whatever I can to help her continue improving.  She’s important to me.  She has my heart after all.

Today I went to bed at 12:30am and woke from a nightmare at 4:30am.  Four hours of disturbed sleep even with the prescribed medicines my oncologist had given me to help me sleep.  This is the second nightmare in less than a week which ended with me wide awake and unable to go back to sleep.

Some believe that there are messages in our dreams.  Some believe that while we sleep our brains are processing unfinished business from the day or perhaps working on repressed or subconscious thoughts.  There all are kinds of dream interpretation “experts” claiming the ability to interpret the general weirdness of a dream into some kind of presumed reality.  Nightmares, it is suggested, are a category of dreams that serve as a warning about deep subconscious concerns or fears that we supposedly repress during our wake periods.  Nightmares are dreams that warn us about those fears and we should take nightmares seriously as the concerns and fears that give rise to the nightmare need to be confronted and resolved.  It seems to be suggested that if we don’t address those deep rooted fears, well, nothing good will come of it.

Do I believe all this?  Honestly I can’t say that I do or do not believe it.  I remember years ago spending an inordinate amount of time pondering my dreams after first reading what was being suggested.  For those dreams that I could remember I would try drawing some correlation between them and whatever was going on in my life at the time, both professionally and personally.  Truth be told for the most part I could never accomplish tying a dream to some event from my wake periods.  I’ve had frightening dreams that have included bears and snakes.  I don’t know that I have any real fear of those two animals yet while dreaming of them I was terrified.

Some have suggested that objects in a dream themselves have hidden meaning.  The presence of bears in a dream, they say, represent solitude and introspection, perhaps even depression.  The meaning of a snake in a dream, on the other hand, seem to span everything from suppressed sexuality issues to some form of transformative rebirth.

Unfortunately the nightmares of this week had neither bears or snakes in them.  The first dream, from last Sunday night, involved a male child who was in danger, some adult figures I who I can’t remember that much, in other words strangers.  What I remember was that the child was in some kind of danger and I was trying to save him.  I don’t remember any defined danger, just that there was some.  The dream woke me and I spent the night exhausted but unable to go back to sleep.

Tonight’s nightmare had Marvina in it and an unknown father figure, apparently hers.  Maybe it wasn’t a father figure but it was an older male and there relationship seemed to be that which one might expect between a father and daughter.  That part, at least with an immediate viewing, was perhaps absurd given Marvina does not enjoy much, if any, of a relationship with her father.  They don’t speak and there is considerable angst directed towards him.  In the dream the father really didn’t contribute to the nightmare part.

What did was the interplay between Marvina and myself.  There was a series of very stiff and uncomfortable verbal discussions between her and I.  For the most part the conversations were benign, nothing that should have give rise to concern on my part yet there was a kind of undercurrent of stress and yes fear that was present.  Ultimately there was an exchange though that was raw and cutting.  No, not expressions of anger, but blows by her to me that hurt to the core seemingly delivered dispassionately with clearly no concern of any potential damage that might be made.

In the end Marvina left the home we were living in leaving me alone, upset and very distraught.  Enough so that I began physically destroying items I felt contributed to the betrayal I felt.  I broke a phone or some kind of communication device, I’m not sure which.  Then disturbingly I began searching the house for a gun which I found.  In my dream I intended to end my life but even this effort was spoiled when I couldn’t find any bullets for any of the guns I found.  It was at this point that I woke from sleep and got up.  Physically and emotionally I felt as though the dream had been real even though it was only a dream.

Dreams, for the most part, used to be quite entertaining to me.  I’ve even woke myself when I began laughing, real world laughing, about whatever I was dreaming about.  I would lay there occasionally chuckling to myself before drifting off to sleep again.  Dreams of the type I had tonight and last Sunday certainly aren’t funny and I was unable to go back to sleep afterwards.

There are various deep rooted issues I have suppressed over the past few years.  The most serious stemmed from the time Marvina had an extramarital affair.  The affair came after my cancer had been found.  The reasons for the affair are many and, whether you accept it or not, blame for it cannot be affixed exclusively to either Marvina or I.  But the combination of issues stemming from the maiming of my body by the cancer and her affair are complex and many.

A big one, naturally, was the shattering of my trust in her.  The hurt I felt you can perhaps appreciate.  So to can the trust issues that lay about me now.  I’ve worked on the later though, a lot, yet they are still there.  I think that had I not I would frankly not be here today.  The return of the cancer almost a year ago would have served as a death knell, a opportunity to escape and bring it all to an end.  But I didn’t.

In the days of living hell that followed my discovery of her affair there were, thankfully, friends who came to me to help.  Sure there were those who took the position that I should leave her or through her out, people who suggested the best thing for me would be to set fire to that part of my soul and amputate from my life the one person I truly loved.  I chose to ignore people who recommended that action.  There were those that suggested physical harm be done to her and they received an anger from me that left no doubt in their minds that should anything happen to her, anything, nothing would stop me from turning and doing harm to them.  Even though I hurt badly and she was the cause of it I was still protective of her.  I still am.

As I struggled with the damaged remnants of trust one friend, surprisingly wise and gentle, told me that if I still wanted Marvina in my life I would have to learn to trust her again, to allow her to earn that trust and that the way to rebuilding my trust in her would be to let go, to not try to control her.  I should let her show to me that she could indeed be trusted.  So I did.  It was the hardest thing I have ever had to do.  The only way I can come close to describing what it was like was to ask you to imagine being blindfolded, tied to a post and facing an unknown firing squad.  Your only input is what you hear.  You hear them debating not going through with the execution.  You even hear their weapons rattle as they are shifted about but never know if they are aiming them at you or whether at any moment a bullet will rip through your heart killing you once-and-for-all.

We each deserve our space in life, our own piece of privacy.  While in marriage there is a surrendering of independence and largely a blending of the two lives there still remains that core need to be alone with our thoughts.  We may share much with each other but there are things that our owns and ours alone that we may not wish to share or may be afraid to out of fear of the other’s reaction to those things we hold inside ourselves.  Normally this is not and should not be an area of concern in a relationship provided it doesn’t impact that relationship in some way.  Privacy and secrecy, I think, can place enormous stress on a relationship particularly when there has been an event that has drawn into question the commitment of one to the other.

Marvina is a private person.  There are issues she struggles with on a daily basis.  Some she has hesitantly shared with me.  No doubt there are plenty she has chosen not to.  She has, on more than one occasion, began a sharing with a warning.  Not a warning about the content of what she was about to share but one aimed at how I might react to what she shared.  The warnings have been clear.  I will share this with you but if you use it somehow to hurt me…  It would seem she has her own trust issues related to me.  I would not use what shares with me to do harm to her.  I love her, more today than I ever have.  But she feels fear.  Perhaps she has never been able to accept that someone could honestly love her.  Perhaps her life before me was filled by those who mouthed the words simply in order to bed her.  I don’t know.

What I do know is that I do love her no matter what has transpired in the past before or with me.  Yes, I still am visited by trust issues and whenever encountering a lack of transparency on her part I become alarmed.  We all deserve our space.  But do we deserve to encounter secrecy, perceived or real?

Met with my Oncologist last week as a follow-up to the CT scan I’d had the week before.  He had already called and given me the results of the scan so the appointment with him was more a formality and an opportunity to have a full blood lab done on me.

There was one minor change in the report though.  When he called he told me that the radiologist had noted a slight hydronephrosis of my left kidney.  At the appointment though my oncologist reread the report and told me he had misread it the first time and that the hydronephrosis was noted as mostly resolved meaning essentially it was so slight as to not warrant attention.  Go figure.

I think hydronephrosis is going to be a thing with me the rest of my life.  When I think about all the reconstructive surgery they performed on me when they removed my bladder and understanding the barest minimum of plumbing concepts (stop laughing), it occurs to me that when I go horizontal, as in laying down, I get a slower flow of urine out of my stoma.  Imagine a straw attached to a bottle of water.  Now when you hold the bottle upright with the straw at the bottom the water inside the bottle will flow out rather well at whatever flow capacity the straw will allow.  Now, if you lay the bottle on its side with the straw sticking out horizontally there will be flow but at some point the flow rate will slow down as the downward pressure of the water remaining in the bottle lessons.  Eventually the flow will stop together even though the bottle still has water in it because the entrance to the straw is at or above the level of the water.

Well so it may be with my plumbing.  My kidneys empty into the neo-bladder the surgeon built for me using a length of my small intestine.  The other end of the neo-bladder exits my body next to my navel.  The exit is called a “stoma.”  Over the stoma I have a plastic bag to collect my output which I have to empty from time to time.  When I’m sitting or standing the flow rate from kidney to receptacle is at optimum efficiency.  That’s how it was designed to be.  Yet when I’m laying down at night all the design dynamics are changed.  At that time there is no doubt that some of my urine collects in the neo-bladder without being evacuated from my body and may well back up into the kidney resulting in hydronephrosis.

While going through chemo therapy I had an ongoing battle with a series of kidney infections and a relatively bad case of hydronephrosis.  Hey, things get infected, they swell up constricting all the little pipes and such.  But I’m not in chemo now and my body seems to have regained its ability to fight off those little nasty critters.  But it isn’t infections that are causing the hydronephrosis now, it’s just how things are designed.

Perhaps I should learn to sleep standing up?

In other news I haven’t been sleeping well as of late.  I’d love to claim that I don’t know why but unfortunately I do know why.  I’m trying to wean myself off the sleep aids I was given during chemo therapy.  I used to be able to nod off quickly at bedtime without any help at all.  Then along came chemo which hosed things up and necessitated something to help me sleep.  Chemo is over now and I want to get back to a life where the most I need is the occasional Tylenol or Advil.  No prescribed stuff.

It’s going to take time though and I have to be persistent in getting to where I want to be.  I went several days without the sleep aids and was pretty much miserable.  The last two nights I caved in and took the aids in order to get some much needed rest but the oddest thing has happened.  Yes, they help me close my eyes and keep them closed and, according to Marvina, I’m in a deep sleep.  I’ve even had dreams.  Still, I am absolutely exhausted as if I’m not getting any real rest.

I guess I’ll have to toughen up and suffer through the sleep deprivation until I’m off the pills.  Hopefully it won’t take long.