The reason I’ve had Mr. Sawyer on my mind is oddly enough quite simple.  Like Mr. Sawyer I too am a survivor of Bladder Cancer and like Mr. Sawyer I too have had encounters with TSA officers.  Unlike Mr. Sawyer though, I’ve had quite literally hundreds of encounters with TSA officers and none of the encounters have resulted in any leaks.

Mr. Sawyer attributes the unfortunate outcome of his encounters as a lack of sensitivity and procedural training for TSA officers.  On the other hand I attribute the success of my encounters to the appropriate training of TSA officers.  I know they have appropriate training because I am a TSA Supervisor and actively monitor the officer’s training.  A LOT of training.  All year long training.  Constant training.

During that training I have served as the training subject for hundreds of officers.  I can’t begin to count the number of times I have been searched.  Good searches and poor searches.  Gentle and rough.  I’ve patiently stood there and been searched over and over and not once have I experienced what Mr. Sawyer experienced.

I believe it when Mr. Sawyer describes what happened to him but I can’t resist speculating why.  I’ve talked about this with Marvina and we are not without some thoughts.

When I was discharged from the hospital after the surgery to remove my bladder and sporting a brand new and quite painful stoma, I was given a limited supply of Urostomy bags to take with me.  They were two part appliances from ConvaTec.  There was the wafer that adhered to the skin surrounding the stoma and a bag that snapped onto the wafer somewhat like the lid of a Tupperware container snaps on.  I was also provided a supply of paste and adhesive wipes to help with leaks.

The next couple of months were terrible.  I experienced frequent leaks.  It didn’t matter what I was doing leaks just kept erupting.  I was miserable.  Marvina was miserable.  We were both exhausted as many of the leaks happened overnight when we were trying to sleep.

In desperation we contacted my hospital social worker and all but begged for help.  Initially they wouldn’t.  Apparently once discharged you are basically on your own.  But we persisted until they gave in and referred us to a group of Oncology nurses who had formed their own business called Restored Images.  The rest, as they say, is history.

My friends at Restored Images explained that the Urostomy supplies given me by the hospital were meant to be used post-surgery during the patient’s initial recovery.  They were not intended for long term use.  The nurses measured and fitted me with a new bag from Hollister.  It was like night and day.  The bag was comfortable, easy to use and most importantly, didn’t leak like the post-surgery version.

I’m telling you this story not to put in a plug for Hollister.  ConvaTec makes excellent products too.  Instead, I’m leading you to the first speculation that Marvina and I have about Mr. Sawyer.  We wonder if he may be still using the post-surgery supplies.  If that’s true and he’s going through what I went through then he is a very unhappy soul.  If so I hope he is fortunate like me and finds someone near him who can give him the level of care and support Restored Images has given me.

But whatever the case, while the experiences of Mr. Sawyer are unfortunate, it has not been my experience and as I explained above I’ve been subjected to many more searches than he has.  Which leads me towards my next blog entry, a kind of first steps I recommend for new patients.  Stay tuned.

I’m still a bit puzzled with the lymph nodes that popped up in one armpit not long ago.  Those and some general discomfort lifting that arm over my head made me a bit concerned.  Oh, and there was the lower back pain which also worries me regarding the kidneys where the cancer had last appeared.  Still, no cancer in the scan means no cancer.  The Oncologist told me I could stop worrying and keep on defying the odds of metastatic bladder cancer.

While leaving I asked Marvina about that last comment.  Remember, I don’t pay attention to statistics regarding my cancer.  She told me that I was indeed defying the odds, that truthfully I should be dead.  The fact that I’m still breathing six plus years after they found it must be a good thing.  As she said, every day with me is a precious gift.

So I’ll keep accepting those gifts one day at a time.  I’m going to relax a bit now and not give much thought to my body.  A mini-health vacation of sorts.

Vacation.  Now there’s an idea…

One more thing before I wrap up this entry.  I’ve talked about the Kansas City Cancer Center before.  This is who treated my cancer.  I truly love them.  They are currently in the process of merging with the University of Kansas Medical Center.  While any merger of this type is frightening for those involved, I feel that what will emerge is an exponential improvement in the care and treatment of cancer here in the mid-west.  While I certainly don’t want to have to return to the center for active treatment I am confident that if I do I will receive no less quality of service and compassion that I received in the past.

Oh, and I should mention, my Oncologist has been awarded the title of Assistant Professor for the University of Kansas.  Way to go Jeremy!  KU Med has added a star to their collection!

My thyroid level is functioning normally.  This was as far as I can remember the first time my thyroid function has ever been tested.  My Oncologist explained that he liked to begin annual testing of the thyroid when a patient reached my age.  I’m not sure how to take that (grin).  I mean, 59 is an odd year to pick to begin testing something.  I might think 50 or 55 or 60, but 59?  Kind of reminds me of things that sell for $1.99.  Why not just say $2.00?  Anyway, I digress.  I don’t know much about thyroid function or what it may mean to me personally.  I know that Marvina’s is dead ergo she has to take daily Synthroid to replace what her thyroid should be producing.  I also know that thyroid and cancer are somehow closely connected.  I think I’ll have to do some more research on this one to better understand why and dispel the shadows in the back of my mind whispering that the Oncologist isn’t being completely forthwith with me.

I also was told that my Creatinine levels were good.  They came in at 1.3.  Okay, some might remember me explaining but at the risk of being repetitive, Creatinine is essentially waste floating around in the blood stream, usually from muscle breakdown.  Happens to everyone, we work, loose muscle mass but grow new muscle to replace what we burn off through exercise.  Our kidneys filter the Creatinine out of our blood stream and eliminates it from the body through our urine output.  Checking Creatinine levels is an excellent measure of kidney function.  “Normal” human Creatinine levels range somewhere between .8 and 1.2 milligrams per deciliter of blood.  In addition to the bladder cancer I also have iGA Nephropathy, a condition where the kidneys ability to filter the blood stream is damaged.  It is incurable and pretty much untreatable.  As my level is 1.3 I’m only slightly high.  Truth be told, 1.3 is excellent for me so I’m happy with this result.

He also tells me I am not anemic.  Now this is one test that makes me sit up and take notice.  Anemia, at least for me, was one of the symptoms I had just before they found my cancer.  If I recall correctly, my bone marrow had stopped producing red blood cells, part of the beginning stage of death had they not found it in time.  To hear that I’m not anemic is a good sign, a very good sign.

So three good results along with the good results from the office visit.  Now all I have left is the CT to I hope remove concern that the cancer has moved to another lymph node.  In a past conversation with my Oncologist he told me I was the best judge of how I felt and that I would be the best at raising a red flag since I know my body so well.  This is what I did during the office visit.

It may be nothing at all.  It may be something.  Until I have the scan and it is interpreted, I’ll have to just take a deep breath and continue to live each day the best that I can.

Marvina is very definitely not a boy.  I can without hesitation testify to that.  She was absolutely stunning when I met her.  I could just about wrap my hands around her waist.  Curley red hair, freckles and green eyes that are as readable as a mood ring, changing hue from deep shades present during passion or deep emotional feelings to a pale almost yellow green, a color that I’ve learned to be wary of since it’s usually accompanied by a very unhappy and angry woman.  Did I mention the freckles?  A constellation of them covering every inch of her body except those places where modesty prevailed and the sun was kept at bay.

She is 46 now.  Truth be told she’ll be 47 later this month but I’ve learned there are some things best not rushed when it comes to Marvina.  Still, a perfect representation of the stubborn red head stereotype, she is defiant in the face of aging.  She is gracefully growing more beautiful with each passing year.  She has given up the curly locks I adored when we first met and has resorted to adding color to hide the occasional gray hair she abhors.  While I can’t wrap my hands around her waist anymore thanks to my culinary skills, we generally eat quite well thank you very much, I still find myself letting out a quiet whimper whenever she bends over in front of me.

Yes she is a woman but even more so she’s a complete person.  She isn’t just the product of looks.  She could live on those alone if that were her choice but that would make her shallow which she is not.  She has a heart so big that I fear it tries to embrace the entire world.  All of it, good and bad alike.  Sometimes I fear that she will crumble under the weight of that heart.  Sometimes I think I should somehow shelter her from the world, or at least the bad parts.  That wouldn’t work though because that wouldn’t be her.  She is her own entity and as such will take on the world in her own way.

Oh and she is intelligent.  To be honest, her intelligence was the first thing that attracted me to her.  Some might scoff at that.  You know, guy, pretty girl, brains?  Right…  But it’s true.  We, I, was fortunate to meet her on the internet via a friend.  Marvina and I emailed and chatted and eventually started talking over the phone long before we physically met.  For that first period of time I had no idea what she looked like.  None.  I just knew that here was a gifted soul with a mind both nimble and adroit that would both challenge and nurture my own.

She has the ability to teach me things I’ve never ventured into before for fear of failing.  When talking to her about complex concepts she keeps pace and more often than not guides me to an enhanced understanding of what I thought I already understood.  Socially and politically we are compatible.  Not a perfect match for that would be boring.  But enough so that we challenge each other almost daily on our perception of the world around us.  She learns and assimilates new things with such ease that it takes my breath away.  She is quite possibly the most intelligent person I know.

Marvina has this absolutely endearing thing she does when she’s truly focused on something.  She sticks the tip of her tongue out between closed lips.  It doesn’t matter what she’s working on or studying, it’s just a thing she does that betrays the amount of attention she is giving it.

I suppose it is reasonable to expect that her emotions will change as she ages.  As of late I feel as though I have to be careful with not just what I say but how I say it.  This is very difficult for me.  According to the Myers-Briggs personality typing I am an ENFP.  Those with some exposure to Myers-Briggs understand what that means.  For those who don’t, well, being an ENFP means I am a flake.  I tend to make unexpected jumps in thought and expression.  I want to get to the ending of a novel without burning all the time and energy to actually read it.

Up until recently that wasn’t a problem for us.  Marvina, while perhaps a bit whiplashed, kept pace with my thought patterns.  She is that good.  But with age and health issues of her own she may not have the energy to keep pace with the quantum jumps in my thought processes.  This isn’t a bad thing but it does give me something I need to work harder at.

I need to slow down and ease into an issue rather than leap right to the crux of the matter.  I need to shape my thoughts and craft my words carefully to give her time and opportunity to follow.   She told me today that she can’t do or say anything right.  That isn’t true.  It may seem that way from her perspective, but in a world of give and take, of personal and joint growth and challenges there really isn’t a right and wrong.  There just is.

I love this woman.  I am grateful she came into my life.  I wish I had found her sooner so that I could have enjoyed more of her.  I enjoyed watching her as I pushed her over the edge during intimacy.  I enjoy watching her as she learns something new or reaches a moment of epiphany.  I enjoy the devotion she heaps on our son and grand children.  I enjoy the sound of her breathing as I lay awake in the middle of the night next to her.

Marvina is quite a woman.  I cannot imagine how sad my life would have been had she not arrived in it.

I could go on…

I talked to the doctor about the lump under one of my arms.  He poked about but didn’t really detect anything.  I explained that the lump was gone now.  He asked if raising my arms over my head was uncomfortable.  It is.  Not in any painful way, just this dogging pressure.

We also talked about the difficulty I’m having getting rest.  I explained that I’ve changed things around at work and will be in a somewhat less demanding work area for the near term future.  We also talked about stress most of which centers on Marvina and her health challenges.

We talked about diet changes or at least scheduling meals differently.  Marvina and I work a swing shift.  We get home and usually have dinner around 11pm.  One to two hours later we’re in bed.  I didn’t think that was a good idea and my Oncologist agreed explaining that while eating might at first make us feel drowsy, once our digestive tracts kicked in we’d wake up.  So Marvina and I will have to work on this one two.

I really hate giving up the dinner thing.  It’s really the only meal we have together during the day.  If we were better we would get up earlier and have breakfast together.  But things don’t work out well that way.

He also added on another test to my lab.  He’s going to check my thyroid function.  As he explained it he likes to begin testing thyroid in his patients on an annual basis when they get to be my age.  Yeah!  Something new to collect with old age.

I’ll also have to wait on my creatinine levels to come back to give us an idea how my kidneys are functioning.  No (visible) blood in the urine which is a good thing.  Still, I need to keep an eye on it.  I also need to schedule an appointment with my Urologist to have him give my stoma a once over.  A distinct hardness has developed around the lower half of my stoma that worries me a bit.  I think it’s also messing with how well my Urostomy bags are adhering.

And in consideration of all the above he decided to schedule me for a CT later this month.  So I’ll be revisiting him towards the end of month to go over the scan.  Hopefully nothing significant will show up and all will be well.

In the meantime I’ll do as he suggested and take a couple of Xanax at bedtime to help me sleep.  If I continue to have problems we’ll have to look at something different.

So there it is, a lot of information but no conclusions.  Cancer sucks.

Marvina on the other hand, her days off have always been Fridays and Saturdays.  So for the better part of six years now we’ve had to settle with just one day off together.  There were brief periods when we didn’t have any days off together.  Those times sucked.

This is all changing this week.  I was given an opportunity to change my work schedule so that I too could have Fridays and Saturdays off too.  I took it.  It means that I have to leave the work area I’ve grown to love and move to another.  The pace of work in my new location is much slower and there are a lot of unknowns.  Some are technical unknowns, work flow, staffing, mostly easy stuff to master.  One big unknown is how I will do moving from a high velocity multi-tasking work environment to one that from the outside looks to be just shy of comatose?  I don’t know.

Neither do I care that much.  For the first time at this job I’m getting a full weekend off with my wife.  Two whole days!  That may not sound like that big a deal but for me it is.  We’ve been talking about what we want to do with the new time.  Stuff for ourselves, time with the kids and grandkids.  So many possibilities and so many unknowns.

Friday I have an appointment with my Oncologist.  It’s supposed to be a routine follow-up.  Of course, it’s more of a crap shoot.  I’ll go and get my vitals checked, then sit down with the doctor and review how I’ve been feeling since we last visited.  There have been some things going on that concern me.  It may be that I’ll walk out deemed all okay.  Might be I’ll be shunted into a hurried CT exercise to see if something’s going on inside of me.

Unknowns.  I don’t care much for not being able to know what the future holds.  Don’t misunderstand, I do love the unknown of a new day.  What I don’t like though is not knowing whether a new day will have a dark cloud marring the promise of it all.

No matter what though, I will have two days off with the woman I love.  More time to give her everything I can that she deserves.  I want a lot more two days.  I want more time.  If change can give me that then I’ll embrace it.  I just fear that unknown change that might take time away.

There was a sudden uptick in leakage.  I had been enjoying a pretty much regimented seven day wear cycle for my ostomy bags but suddenly I was burning through them at an alarming rate, in some cases two a day.

There is an unusual hardness around the stoma, specifically on the bottom side.  My ostomy nurses tell me not to worry that with all the reworking of my plumbing something as simple as constipation will cause a harness to appear.  Poking about the web however tells me that it’s not unusual for a hernia to appear requiring minor or major surgery depending on the extent of it.

There is pressure in my lower abdomen.  Nothing I can pinpoint precisely.  The best I can do is describe it as if there were a large weight just sitting low in the abdomen.  No pain, just there.

Finally, there was this endless tiredness.  On some days total exhaustion.  Bad enough that when walking I felt like I weighted double my weight.  It was tiring just to walk.  I was waking up in the middle of the night, almost always right around 3AM.

So last night, in desperation, I took a full mg of Xanax and a healthy (yeah me) shot of my favorite Irish whiskey.  Slept the entire night and woke up feeling pretty good.

I’m going to do the same tonight and see if I feel at least the same tomorrow and hopefully better.  If that’s it I’ll go back to adding Xanax as a sleep aid like I did while receiving chemo.

Maybe all the worry is really about not getting sufficient rest.  Maybe all the worry is for not.  I don’t really know.

I DO know though that I’m going to talk this all over with my oncologist and get his thoughts on it.  It will no doubt mean a CT and more lab work but I can handle those.

End the end, if I’m clear a huge load of stress will be lifted off of my shoulder.  More importantly, it will take away a lot of worry that Marvina is carrying around too.  A worry that I wish I could spare her from and could, if I were to choose the path of hiding things from her.

But I promised I wouldn’t.  So my only alternative is to prove to both of us that I am indeed okay and if I’m not then I’ll have to show her that life will go on.

Once home she put me into a hot shower to bring my temperature up, then bundled me into bed with blankets.  I may have been nauseated too but I don’t remember that many details from it.  I only remember that it wasn’t fun.

So, the past few weeks have seen pain in my kidneys, predominantly my left, precisely where they found the cancer when it returned.  I’ve had back pain and I feel tired all the time.  Thinking back I’ve also been ever so slightly nauseated as well although so far I haven’t had to throw-up.

While I didn’t have any back or kidney pain today I was tired and nauseated.  After getting off work, after dinner, my core temperature dropped again.  This time I got to it fast and hopped into a hot shower.  So far so good.  I feel a bit better temperature wise but the rest still feels blah.

I also have pain in my left armpit.  I’d noticed a lymph node, I think, had swollen  up there a few weeks ago.  Feels like something there now.

I guess I’ll call my oncologist and tell him what’s going on.  This will likely trigger a CT or MRI.  I’m okay with that since it will answer if anything really wrong is going on cancer wise.

Of course, it could be my kidney disorder that’s rearing its ugly head.  If there’s no cancer I’ll have to make an appointment with my nephrologist and get that checked out.

All this makes me want to cry.  I don’t want to slip into sickness again.  I’m not sure I have the strength in me to fight it again.

Shit.

I haven’t been feeling well the past couple of weeks.  No doubt part of the problem is lack of good rest combined with an uptick in life’s stressors.  Normally that wouldn’t be a problem.  A little downtime, reflection and attention to things needing it would do the trick.  But on top of the tiredness was the sudden appearance of kidney pain and a seeming drop off in nightly urine output.  The pain seems centered around the left kidney which was where the cancer reappeared in a lymph node a couple years ago.  So you might understand why it might be concerning.

As for kidney function, one measure we go after is how much creatinine is in my blood stream.  I’ve gone over this before, what’s normal and where mine generally runs.  One sign of not-so-good things is this weird skin itch that breaks out.  No matter how much you scratch it just won’t go away.  This is one sign that the creatinine is spiking.  Fortunately, I’m not having any of that so maybe my imagination is getting the better of me.

Still, I can’t explain the kidney pain.  Perhaps a passing kidney infection?  I don’t know.  But overall I just don’t feel that good.

I need to call my company’s vacation manager and get some time off.  Maybe a good week of no work would do me good.  Give me some time to recharge.

As for the stressors well, I’m not sure what I can do about those.

I’ve considered a lot of possibilities regarding my death.  I’ve thought of using one of those services that will deliver e-mail for you after you die.  I’ve thought of hand written notes given to friends with instructions to mail them at specific times after my death akin to that movie “PS I love you.”  I had not, however, considered a final post to this blog.

As Derek writes in his last post there are a myriad of things we won’t experience after we’ve died.  In my case my grandchildren growing up, marrying and producing kids of their own.  What my wife Marvina will do.  How my son and daughter will fare.  Who will be there to help after I’m gone.  Lots to think about but not much one can do about it.

I can, though, avoid leaving this world with the regret of not having told everyone all the things I wanted to say but somehow put off or forgot to.  I’ve felt that regret when friends and family have died.  But for one more day to tell them how important they were to me.

I may author a final post.  I may not.  But what I will do though is to make sure I say and do all the things I can before I die so that I won’t leave carrying the regret of things undone with me.  I may choose to say some of them here.  I don’t know.

But after reading Derek’s post I know one thing for certain.  I can’t begin to tell Marvina enough how much I love her and what she’s meant to me.  I will though.  In every way I can.

I love you Marvina.