Thursday, September 17, 2015

What NOT To Ask The Urologist...

After my recent setback at the oncologist office, I was not looking forward to my urology visit.  OK, no one ever looks forward to their urology visit, not even the urologist (I mean, who wants to look at that all day long?).   However, I was looking forward to it even less this time.
For anyone that hasn't had a urology appointment this is how a typical urology visit goes.  No matter when you have been there last, there will always be an additional 312 pieces of paperwork to fill out, most of them involve digging through your wallet for various insurance cards, IDs, addresses of estranged relatives, etc.  Right in the middle of the paperwork, they will call you back up to the counter and give you a cup.  This is not for drinking out of, even though it is already personalized with your name on it.  So then, you have to figure out what to do with all the contents of your billfold that are spread on the seat next to you to fill out page 188, paragragh H, subsection 22.3.1 of the form verifying that you read the Paperwork Reduction Act, while you go off to fill the cup.
Once in the restroom one of two things will happen.  It doesn't matter how much you have "studied" for your urine test, there will still only be these two options.  Option one, you stand there awkwardly with the cup in one hand, and..."it" in the other, like two gunslingers at high noon staring down each other, neither one willing to draw first.  You will stay like this for 30-45 minutes waiting for the flow to begin, which will happen precisely when you hear the nurse out in the waiting room calling your name.  Or the only other possibility is you start going immediately and your volume of output is approximately the  same gallons per minute rate of Lake Erie flowing into Niagara, which is all well and good, until you realize you are holding a cup with the capacity to hold the juice from a single grape.  At this point you have to decide, are you going to overflow on your hand or spray all over the room trying to set the cup down midstream.  These are the only two outcomes to the second situation.  Don't try to be a hero and think that you can pull off some great acrobatic move to save the sample and also keep the floor dry.  That kind of cavalier attitude will only result in wet clothes and/or soggy paperwork.
Once you have been called back to the doctor's office, you will remain sequestered there for roughly two and a half hours.  Around you will be pictures of kidney stones resembling medieval weapons...except with more spikes, disgusting diagrams of every genital malady known to man (and some animals), and cutaway anatomical models of sex organs that will make you never want to have sex again.  You will sit here alone in the Office of Horrors until you finally get the urge to pee because you drank too much water for the "cup" and as soon as you pull out your phone to try to get your mind off of your situation, the doctor will walk in and assume you are taking pictures of the plastic cutaway penis.
It is at this time, the doctor will ask you questions having nothing to do with why you are there. "Do you have to urinate more frequently at night if there is a full moon?  Have you ever tried to scratch the back of your knee with your elbow?  Do penguins sweat?  Do you like gladiator movies?" And if you are lucky, you drop your pants, get a quick slap and tickle, pull up your pants, and get charged a couple hundred dollars.  However, I am going to issue a warning!!!
If you have a serious concern, by all means, now is the time to ask the doc about it.  After all, it was my own insistence, after the nurse missed my cancer initially, that resulted in my cancer diagnosis.  Other than that I have found the best thing to do is DO NOT ASK THE UROLOGIST ANY QUESTIONS!!!  See, if it's time for a prostate exam, it's an important part of a male's health and we all need to unpucker and endure it.  However, any added information or question for some reason results in a bonus prostate exam.  I don't know if they get paid more per violation, or all the doctors have a bet, or what, but every question results in a buttsploration.  "Doc, is it normal for your urine to be a little darker if you have been sweating a lot on a hot day?" DROP YOUR PANTS AND BEND YOUR KNEES!  "Doctor, is just waking up once a week in the middle of the night to pee excessive?"  HERE COMES THE BIRDIE!!  "How's your golf swing coming, doc?"  KEEP AN EYE ON YOUR BALL AND GET READY FOR THE FOLLOW THROUGH!!!!
It was for this reason that I decided NOT to ask when I would be done visiting him.  After all, every other time I had been asked, I was always told that I would have to see him for the rest of my life, and the next thing I would hear is the snap of a rubber glove behind me.  So as I my freshly lubricated buttocks swished their way to the front desk to make my next appointment, I was pleasantly surprised to be told that I wouldn't need to come back unless there was a problem!  After all, I had already been devastated by the news a couple months earlier that I was not being released by the oncologist when originally planned.  It seemed that following months of bad news from doctors, I finally heard something I wanted to hear...even if I was walking funny.
Now I just want to clarify one thing here, testicular exams and prostate exams are very important, and there is a peace of mind that one has after clear test (well, that comes after the initial shock).  And even though I was released from my urologist I will continue to do self exams (testicular self exam, I am not flexible enough for the other) and will still be getting the scheduled exams from my family doctor, oncologist, dentist, butcher, and anyone else with a white coat on (at least it seems that way sometimes).  But for now I can relax...without being told to relax and bend over...and celebrate graduating from one doctor and hopefully being that much closer to being a considered a cancer survivor and not a cancer patient.

Tuesday, June 16, 2015

PTSD and Cancer?

Having recently completed a trip that I had planned for a while, one of my bosses asked me how it went.  I told her how the trip had special significance to my cancer fight and how it took on a new meaning after not being released from oncology as I hoped, and I talked to her about how the trip affected me.  I made the comment to her (also someone who fought her own cancer battle), I said "It's weird the way certain things trigger these memories and feelings, it's almost like PTSD."  She replied "It is PTSD!"
Her words struck me as odd.  I know people with PTSD, and some of them have a lot more to worry about than I do.  After all I was basically disappointed that I have to keep going back to the doctor, that I'm still a cancer patient.  That's all.  Yes, there are certain triggers, certain things that cause memories to come flooding back, but that's just life.  That happens with lots of things right?  Every time I smell cow manure, I get flash backs to the county fair and start look for deep fried anything.
Later on that day, I just Googled "PTSD" and "cancer", thinking I would find a few anecdotes here, or casual observations there.  What popped up on the page astounded me.  Studies, LOTS of studies on the subject.  And they all came to basically the same conclusion, it's not just in our heads...well it is, technically, I guess...but a lot of us are experiencing it.
There were tons of articles but the same results seemed to be popping up in every study.  One out of every three of us experience this.  It only shows up AFTER active treatment, usually when patients are in their monitoring stage.  It can start as soon as 6 months after active treatment, but many experience it at about the three year mark.  And the trigger to cause the onset of the effects doesn't necessarily have to be cancer related, but it brings back the cancer thoughts.
Before I go any further, I don't think I have "post traumatic stress disorder".  As I mentioned, I know people that have PTSD, and I wouldn't even begin to compare my problem with theirs.  However, I do have SOMETHING going on.  And the research shows that clearly a lot more of us do too.
That's when I started getting a little angry.  Further reading on the studies shows that very few oncologists even realize that this is going on.
For those that haven't been to an oncology monitoring appointment it goes like this, you sit in a sterile waiting room (literally, because chemo knocks out your immune system).  You look at the pile of old hard candy (because chemo also dries out your mouth), trying to decide if you are desperate enough to get a piece.  Then the phlebotomist calls you, puts you on the scale while you try to claim that your shoes weigh 50 pounds a piece, takes your vitals, and sucks out about 4 gallons of blood for various tests, spells, and incantations.  Then, before they shuffle you off to wait in the oncologist office, they ask where you are on the pain scale, physically and mentally (you know that little scale of various emojis before they were emojis, ranging from happy face emoji to frowny crying face emoji).  That's where it dawned on me when the breakdown was.
Going into my last oncology appointment, I was excited.  I had my monitoring extended once, but had been told by everyone...except the oncologist, that this would probably be my last appointment ever.  When asked where I was psychologically, I picked a "3" out of "10" ("10" being the most stressed).  After I was told to continue monitoring I was absolutely devastated.  Had anyone stopped me on the way out the door and asked me to give my number on that scale again, it would have been an "8" or a "9".  This was the failure.  This is where no one is paying attention.  And I don't necessarily blame the oncologists.  Like many of the studies discovered, oncologist are trained to fight cancer, not delve into one's psyche. Most doctors aren't cross trained.  You don't go to the vet, have them spay or neuter your dog, then ask them if your own tooth has a cavity...well I know one person that might, but she's the exception.
One in three is a pretty significant number.  That is what surprises me.  How can 33% of us be ignored and forgotten about?  If I handed you and ice cream cone and said it's $5 and there is a two in three chance it will taste delicious, but a one in three chance it will taste as bad as a rock concert restroom smells, you probably wouldn't do it.  There is a 67% chance you will have fun on this roller coaster, but a 33% you will get seriously hurt or killed...are you going to wait in line?
Although, there is tons of research, when I went to the major cancer resources to find out what help there was out there, the websites had surprisingly little information.  The research is out there.  It all basically says the same thing, but no one really seems to know what to do with that knowledge.  And in the mean time people are falling through the cracks.  I haven't thought about harming myself, but the studies do have morbidity rates that are higher than people not going through it.
As in many things with cancer, we need to start educating each other, and passing along what helps us, and that its a normal feeling, and how to get help.  We've always been good about warning about cancer insomnia, scanxiety, and chemo brain, but not this whether it truly is PTSD or whatever it is.  Maybe it's because it happens after most of us have left our support groups or no longer get the longer talks with the oncologist and their team.  But we have to make a change somewhere.  We have to get the word out.  We have to help each other.  We have to do something.

PRS Guitars, the Cure for Cancer...

For anyone that doesn't know, right before I had gotten diagnosed with cancer, I had saved up to buy a new PRS guitar.  I had sold various things and was finally ready to make my new purchase.  When getting ready to go to the store, I saw two separate ads for people selling used PRS guitars and another brand I was wanting to try as well.  I realized if I bought used instead of new, I could get TWO guitars instead of one.  And we all know, two is twice as good as one.  I bought a PRS and the other brand.  Later when one of the other sellers finally got around to contacting me back and offered to sell me the other PRS.  I was enjoying the one I had, and still had a little bit of money saved, so I bought it as well.
As luck would have it, my surgery limited the amount of weight I could lift.  Those PRS guitars I bought were just under the weight limit and were how I passed much of the time recovering from surgery and chemo.  I decided to sell some more stuff I wasn't using on ebay (like parachute pants and a disco ball) and get a nice PRS guitar after I got well.  I didn't get the chance.  For the first Christmas after Chemo, my whole family got together and bought me one.  It was a gift I never expected to get and one of the first pics of my son were taken with him holding it.  A few days after Christmas, I walked into the music store with what little money I had been saving for a nice PRS (not nearly enough) and there sat the guitar that I had originally been saving up for in the first place, marked down drastically because it literally fell off of the back of a truck and chipped some paint.  Although, not nearly as nice as the one my family had just gotten me, I had just enough cash to cover it, and decided to make the PRS story come around full circle by buying the one that made me start the journey in the first place.
Two years ago, I had the opportunity to meet Paul Reed Smith and had gone over in my mind everything I was going to say and thank him for what was basically a coincidence, but it meant a lot to me.  All I managed to get out when I met him was my first name and I got too emotional to carry on any further.
Now I would say this is all review to my regular blog readers, but I can't imagine that anyone would actually come back to my page twice, it's really not that good, so that is what you have missed in the past.
As I said on my last post, I was expecting to be done with oncology visits and therefore done with cancer in May.  The nurses this past November told me it was customary to schedule something big to celebrate breaking free of the cancer stigma.  Paul Reed Smith was opening up the doors to the factory in June, just a few weeks after I was to be released, so that is the trip I planned for.  That is the trip that would bring everything full circle.  I started my cancer journey with PRS guitars, I would end it with a tour of the factory...except that didn't happen.  I didn't get released.  I got sentenced to an unknown number of years of continued monitoring.
I rolled into Maryland and on the PRS campus with a bittersweet feeling.  This was supposed to be a celebration of being free, instead it was a reminder that I am still going to oncology visits.  I am still a cancer patient.  I am still living under that threat that I am not free and clear.  
Now here is the thing.  Paul Reed Smith is an actual guy, not just some made up brand.  He's just a guy that likes playing guitars and tried to make a great guitar at good price.  He doesn't know any of this is going on.  And all I really wanted to do was say "thank you".  My wife came with me to a private event that was essentially for the PRS "fan club".  Paul was being very cordial and walking around to everyone talking to them, signing autographs, answering questions.  He was working the room and making his way over to us.  My wife was wanting him to come over, but I knew I wasn't ready.  It wasn't the man that was making me emotional, it was the whole process, the whole history.  I have had those PRS guitars for only about two weeks longer than I have been dealing with cancer.  The two are linked in my mind for eternity.  I can't separate the two.  One helped me survive the other.  I feel silly because it's just a hunk of wood and a little bit of metal, but that's where I spent my time and worked through my problems.  
As Paul got closer, I knew I couldn't say thanks this time either.  When you have had cancer, there are just certain things that trigger you memories and take you back to that time.  It could be a food, a phone call, a doctor's office whatever.  For me the flashbacks sometimes take me back to PRS guitars and or back to the urologist office when a guy I have just met asks me to drop my pants and starts playing with my ball.  Luckily that only happens in doctors' offices (or what I was led to believe was a doctor's office.  Fool me once...)  So as Paul got closer, and as my wife got more excited to tell him what I hadn't been able to, I just had everything flood back into my memory.  The cancer, the chemo, the celebration that didn't happen, and the seemingly endless years of monitoring.  I couldn't take it.  I walked out.  No explanation, I just walked around to the side of the factory where no one could see me.  I squatted in the grass.  I walked by the pond.  I messaged a good friend.  I did everything to try to distract me from what I was feeling.  It didn't work as well as I wanted.
I had decided I just needed to go through the factory alone.  My wife decided to get something signed by Paul for our son, since ultimately the PRS guitars will be his one day.  Cell service was non-existent in the factory and as soon as I emerged, my wife called me and asked where I was.  She had gotten the autograph for my son and told Paul that I wanted to say thanks.  Paul had recently had cancer affect people in his life and told her he knew exactly what I was going through and started searching for me.  She said she would bring me back to him.
She found me, and took me in the tent.  Paul had a line of people seeking autographs and I didn't want to interrupt.  All of a sudden, he looks up and sees my wife, whispers something to his assistant, and made a beeline for us.  I tried to keep it together.  All I needed to say was thanks, I knew I could do that much.  That is when he put his arm around me, told me what the people in his life had been through, and I broke down as he shared his pain.  I did manage to say thanks, but that was about it.  But that is what I needed to do.  I may have shown up for the wrong reason, but I still accomplished the original mission.  A week later, I watched Paul put on a presentation at another show.  I no longer had to say thanks.  I didn't go up to meet him with everyone else.  He knows my pain, I know his, and I finally got to say thanks.  Now I just need to learn how to play guitar halfway decent before the oncologist kicks me loose and everything will be complete.

Monday, June 15, 2015

Goodbye, Oncologist...Oops, Not Yet

Last month I was excited to go to what I was led to believe would be my last, or next to last oncology appointment, either way 2015 would be my final year.  The visit before the phlebotomists asked me what I was going to do to celebrate my release.  They said it was tradition for most cancer patients to celebrate finally being free with a trip or a big purchase.  So, I already had my trip scheduled and booked, I had everything ready to go.  On the big day, I took my three year old to see the nurses.  They had heard so much about him I wanted him to be able to say "goodbye".
When I was first diagnosed, I was given the option after surgery of doing CT scans approximately every other day (or at least that is what the schedule they presented me with seemed to be) or do a round of chemo and have hardly any CT scans and be done with monitoring a lot sooner.  Well...doctors have a tendency to lie to get you to do what they want you to do.  I did the chemo, which seemed to be immediately followed by a CT scan.  I am not so sure I wasn't getting a CT scan during my infusion.  So anyway, that was the first clue that things weren't going according to the schedule I was initially presented with.
The bending of the schedule continued until my three year mark, which is when I distinctly remember originally being told I was going to be cut free.  Then the oncologist said it would probably be good to monitor until the five year mark, but we would do less CT scans...then he immediately sent me for a CT scan.
You never know when you are no longer a "cancer patient".  I mean the cancer was cut out eight days after we found it. Was that the end?  Was it after my chemo infusion?  Was it after my chemo brain fog left?  When?  I will admit, there are advantages to being referred to as a cancer patient.  If you get a Diet Pepsi instead of a Pepsi at the drive thru, normally, they would just give you a Pepsi to make up for the mistake.  If somehow you can work the words "cancer patient" into why you were devastated to get a Diet Pepsi, you get your Pepsi AND an ice cream.  But still I was done being the cancer patient.  I was hoping that the Oncologist Code said they could only lie about continuing monitoring one time, then they had to go back to lying about CT scans.
There is a stigma about being a cancer patient.  Among cancer patients there is the joke that you always here "you look good" out of a person's mouth first.  No one really knows what that means.  Do we look better than death?  Is that what they were expecting?  There are many colleagues that I see a few times a year with whom I used to have normal conversations, ever since my diagnosis they start off the same way. "How are you feeling?"  It's just front and foremost on some people's minds.  Which in turn, makes it front and foremost on my mind.  I was looking forward to being able to say, "I'm finally done with oncology so we can go back to talking about guitars, cars, or some sport that you care about and I don't."
My son and I walked into see the oncologist.  The phlebotomist had already said "bye" certain that I was being cut loose, just shy of five years.  I did my first and what I expected was my last introduction between my son and the oncologist, when I got the news...maybe it's still too early to cut me loose.  Maybe we should monitor tumor markers and CBC for a few more years, BUT no CT scans!  I expect to get an order for a CT scan in the mail any day now.
I didn't want to let on to anyone, but I was devastated.  I had been looking forward to being released, well, since the day I was diagnosed.  The nurse practitioner thought sure it would be today, the phlebotomists thought it would be that day, everyone in that office thought it would be that day...except the doctor.  Luckily, I had my son with me so the only things I was allowed to focus on were pancakes and Legos...not at the same time though...well OK, he did mention that we needed to buy more Legos while eating his pancakes.  I sent messages out of the news to those that were wanting to know.  Almost all wished me congratulations that I didn't have to do CT scans anymore and that it was good news.  Only one person asked me how I felt about that.  And the truth is I hated it!  I wanted to be done.  I wanted to be free.  I wanted to get on with my life.  I wanted to be able to say that I was a "cancer survivor" and not a "cancer patient".  I wanted to be free of the stigma.  I wanted to be free of the "How are you feeling?"  I wanted to walk out from under that cloud and finally be done. But now I have to let the cloud follow me around for a few more years.
So that's where life left me that day.  Still a cancer patient.  I had a special trip booked that instead of being a celebration of being done with cancer it's become a reminder that I am still a cancer patient.  And there I found myself, sitting in a booth in a restaurant, with a cloud still over my head, a bandage from a blood draw still on my hand, and a three year old giggling while he stabbed and ate the "eyeballs" off his pancake and demanded Legos.  Well, I guess life ain't all bad.

Tuesday, July 22, 2014

Another Lump? I'm Running Out Of Balls... Or The Nutless Wonder?

For better or worse, going through testicular cancer once makes you a little gun shy.  Losing one testicle isn't too bad, but you quickly run out of testicles to lose after that.  I have sometimes wondered if having to carry a personal cell phone AND a work cell phone may have put out too much radiation and caused my cancer.  So to be safe, I wear cargo pants all the time and carry the phones lower.  My friends make fun of me, because I am still being exposed to twice the radiation of one phone it's just on my leg now, but I remind them that I still have TWO legs.
Anyway, at my last urology appointment, I mentioned I found a lump.  Having the health issues I have, I regularly see five different doctors, four of whom have a great sense of humor and I can joke around with.  However, my urologist, who is a great doctor and ultimately responsible for saving my life since he caught the cancer when a nurse practitioner dismissed it as nothing, he is all business all the time.  No joking, nothing but the facts.  I mentioned the lump to him, and kneeling down for my yearly check he was able to locate it as well.  He stated he was fairly certain that it was nothing, but if I wanted to get an ultrasound done to rest easier, I could.  I stated, I was probably just scared from finding the lump the first time (that ended up being cancer) and was paranoid about finding lumps now.  Still kneeling down and checking out the lump, he looks at me with a serious look on his face and says "When you feel something, I want to feel something."  Now, I know what he meant by that.  He meant, no one knows your body better than yourself, so if you notice a change you need to report that to your doctor.  It just seemed a little funny to me hearing that with someone kneeling down and holding my testicle in his hand.  And knowing that this very good doctor would not see the humor in what he just said, made the whole moment funnier.  I felt like a kid sitting in class in grade school trying not to giggle at "Guess what?  Chicken butt!"  I came pretty close to biting a hole in my tongue to suppress the laughter.
Fast forward six months later, and I kept feeling that lump with my regular checks, and it kept making me more and more nervous that it was "something".  I finally called the office when I could take no more to schedule an ultrasound.  The day they found my first lump, my ultrasound was scheduled for as soon as I could drive to the other office.  Last week's scheduling took days.  When the scheduler finally did return my call, she said, "When did you want to come in?"  I just told her, "Tomorrow!"
I went to the office and was relieved to see the same old lady that had performed my ultrasound last time.  Now there is probably more than a few males that would read this that are thinking to themselves, "Old lady?  No!  I was some hot young thing fresh out of college!"  And those males haven't thought this through all the way.  While the testicle may feel like this finely crafted orb, it is kept in the most hideous, unattractive container.  I am not much on trying to figure out what the fairer sex finds attractive, but I would imagine that is pretty low on the list of alluring male body parts.  And you are going to force someone to be up close and personal with it for some period of time since, to do it right, they have to scan the area from two different angles.  You want someone that you aren't trying to impress, that knows what they are doing.  You want to walk out of that office with some peace of mind.
And speaking of peace of mind, I explained to the lady where I felt the lump and she felt the area too.  This is where years of experience come in, because not only did she find the lump, but she described the area better than I could, which made me comfortable that we were both focused on the same spot and that she would get good images of the area I was concerned about.
First, she went ahead and checked "lefty" and put me at ease by saying, no matter what they found, he was going to stick around because the lump was not affecting him at all.  That was my main concern, I admire the "flatbaggers" because their journey is much more difficult with testosterone replacement therapy and other issues.  I didn't want to go down that road.  I did mention to her that last time, I could tell it was cancer, even though we had to wait for someone else to read the images, just by the look on her face.  That was a mistake.  She put on her best poker face this time, making sure I had no clue as to what she saw on that screen.  Do NOT play cards with that woman!
Feeling confident that at least I would get to the bottom of things so to speak, I went home to wait for the news.  Unfortunately that was Friday, so I had to wait through the weekend.  Each night, scanxiety was a little worse, and I slept a little less.  Finally, last night (night four), I think I slept for all of about an hour.  My wife had enough.  She told me to call the doctor.  I told her I was going to wait, because they were supposed to call me.  In my mind, if you call too much and irritate the doctor, they make the incisions twice as long, make you wait longer in the waiting room, or leave the blinds open during your screening.  She said "OK", then went to work and called the doctor anyway!  The good news is, apparently it's no big deal.  She didn't find out what it was, because she just wanted to hear it wasn't cancer so that I would quit tossing and turning all night long.
So, what is the moral of the story?  I don't freaking know anymore.  How about, when in doubt check it out!  Yeah, that works.  But seriously, there are two reasons for checking out anything you find suspicious.  First it could save your life (like it did the first time I noticed an odd lump) and second, you will be able to relax because you aren't worrying about it anymore.  And remember the words my doctor said to me, that if you feel something, he wants to feel something.

Saturday, July 19, 2014

Testicular Cancer Top 10....or I Am Not A Doctor, But You Are Still Going To Tell Me About Your Nuts...

In the breast cancer community, there are a lot of sources for finding information on how to do self exams, what treatment options are, and how to cope afterwards.  And while there are certainly many sources of information and non profits for so called "men's cancers", we aren't as open about discussing them.  It is ironic that the same ones that like to boast about being so well endowed that they make donkeys jealous are the same ones afraid to ask anyone how to do an exam.  I am not real sure what the reason for the disparity between the sexes is.  Maybe it's because breasts are right up front where you can see them and testicles are hidden, except in European bathing suits.  Or maybe how the great masters would always view breasts as these perfectly formed pieces of art that they would spend days sculpting into marble, while at the same time, the artists would make a guys junk look like a wadded up piece of paper with some concrete slapped on it.  At any rate, the public perception about the two are not the same.
After I went through my fight, and if you have read any of my posts you know that I have no shame in discussing what one experiences with testicular cancer, I cannot tell you how many times friends, colleagues, and random strangers have pulled me aside and asked, "How did you  know?"  I certainly don't mind answering that question.  I can explain how I found mine and then I usually refer to a website like to get a more clinical and better explained way to do exams.  Then the feeling of dread comes over me, because I have been through this enough to know what is coming next.  The person will then describe, in great wrinkly and hairy detail, why they are asking me that question.  So far, they have always stopped short of actually showing me, and I would like to keep it that way.  Let's face it, they are not a very attractive piece of anatomy.  One of the few good things about having a nutectomy (orchiectomy, if you want to get technical), is there is one less of those ugly things that you have to look at in the shower, and bump into random stuff with...oh, and you can do your self exams in half the time.
So in the spirit of changing the stigma of testicular cancer and breaking the silence, I will post before and after pictures of my...OK, not really, but I will answer some of the questions here, that I normally get asked in a hushed voice in the corner of a crowded room, or outside around the corner out of ear shot of the smokers, or in late night phone calls with heavy breathing...OK, that person never actually says what they want, but always hangs up after I tell them to do a self exam.

1. How to do a self exam?  There are several sources for how to do a self exam including the one from the Testicular Cancer Society I mentioned above.  Some places even offer shower cards just like some breast cancer foundations do. There are two things to remember.  First do exams consistently.  You will notice something changing down there long before anyone else will.  I don't care how often you go to the doctor or what odd pastimes you may have, you will still notice first if you do regular exams.  And the earlier you catch it, the less it spreads to other parts of your body.  Second, we all know about shrinkage, so the boys have to be warm to get a good exam.  That is why it is generally suggested during a bath or shower, rather than right after taking the Polar Bear Plunge.  After all, you want things loose to feel details, cancer starts small and grows, you don't want things cold and shriveled like trying to feel two acorns stuffed in a leather wallet.

2. What if I find something?  It's probably nothing, but do you want to take that chance with your life?  Go to a doctor to be sure.  You would be amazed of the things that hang out with two nuts such as hydroceles, spermatoceles, cysts, drummers (sorry, musician joke), most of which don't hurt anything.  In my case, harmless hydroceles were found, but the issue is they can mask cancer, so I was taught to do an illumination test, where basically shining a flashlight behind the boys GENERALLY causes the harmless stuff to glow and the bad things to be dark.  However, let your doctor determine that for you.  That is not always the case and if done wrong, you can have cancer growing for months without realizing it.

3. If it is cancer, will they take my ball(s)?  Most likely yes.  That is why you want to catch it early so you only lose one.  But ultimately, what is the big deal?  I assure you that in the almost four years since "rightie" was removed, no one has noticed.  I get just as many compliments down there as I always have.

4. Will my testosterone levels drop with only one nut?  Maybe, but probably only slightly.  My doctor put it to me this way, if you lose one lung or donate a kidney it doesn't mean you are running on half power.  Usually both don't work at full power anyway, so the remaining one just works a little harder than before.  My testosterone numbers are well into the normal range.

5. Will my sperm count drop?  See above.  The fun part is with testosterone testing you give a blood sample,  but with sperm count testing there is no needle but there are dirty magazines.  Even if you drop in half, you will still more than likely have enough to get the job done or get you in trouble, however you view that situation.  Just a word of caution, I don't think the girl downtown offering to check your sperm levels for $5 dollars has had any medical training whatsoever.

6. Will I be able to have kids?  God I hope so, because I had one, so if you can't then someone has some explaining to do!  Yes, either the natural way or with frozen guys.

7. What is the first thing I should do after being diagnosed?  Ask all of your hot female friends if they want to say "goodbye".  OK, obviously that is a joke and probably wouldn't even work.  But I would call an organization like especially if you are interested in having kids.  They can tell you about certain grants that will pay for collection and storage of frozen guys, but the catch on some of them is you have to apply BEFORE you go to get the collection done.

8. Can the cancer come back?  Yes it could, but that is why you talk to an oncologist to see what your options are.  I opted for chemo for the peace of mind of not having to worry as much about it returning.  A few weeks of feeling sick was more attractive to me than a lifetime of worry.

9. Do they just slice open the bag and take out the groceries?  No!  They go in from around your waist so they can take all of the plumbing too, just in case it has started spreading.  So you can show people your scar without being obscene...unless you want to.

10.  Do you miss it or have any phantom pain like an amputee would?  No, and the good thing is, say hypothetically, you have a two and a half year old that runs at you full speed with a plastic Mike the Knight sword, the chances that he will hit your tender spot have now been cut in half (although he still manages to get me on the tender side EVERY SINGLE TIME!  I am throwing that damn sword in the trash!).

So there you have it.  The top ten (legitimate) questions I get asked in whispers and darkened corners.  If you have anymore (legitimate) questions I will answer them like I did here, based on my own experiences or direct you to a trusted source.  I am in no way a doctor, and I in no way want to see pictures, diagrams, or even very accurate descriptions.

Saturday, July 5, 2014

Old Feelings Die Hard

Four years ago this week, I first noticed my lump.  My wife had went on vacation with her mother and I stayed home alone to take care of work projects and watch the dogs.  The past three years, I never really paid any attention to this date.  After all, it's the date I just noticed something.  It wasn't the date I was diagnosed.  It wasn't the date I had my surgery or went through chemo or anything.  But that is the weird thing about cancer, it seems you are never really completely free.
This year we had planned to take my two year old to my parents to watch fireworks for the 4th of July.  From their house, they can see most of the fireworks.  And we thought if we take him there, and he doesn't like the loud noises, or the bright lights, or he just starts being...well, a two year old, we could just take him in the house and not have to deal with traffic or crowds or that one guy that has to describe every firework loudly.  After we had made these plans, my job made other plans, and my wife offered to take my son without me.  It was a plan that was seemingly perfect, my son could experience the fireworks for the first time and I could keep skittish dogs company in the country.
That is when it hit me last night.  I have been passing my scans without any problem, and my scanxiety has dropped to almost nothing.  I only have to go to the oncologist twice a year now  Even my dermatologist told me that she could tell I was really making a good effort to avoid skin cancer.  So I haven't been thinking about cancer much at all.  But last night was different.  I was back to that place four years ago, just me and the dogs.  The weird thing is, I didn't feel a lump, but I did have that feeling, a feeling I can't explain.
Most of us when we are diagnosed, aside from the shock of the "C" word, you get this "icky" feeling that something is growing inside of you that wants to kill you.  The surgery can't come quick enough, you just want that stuff out today.  That is the feeling I had last night.  The feeling that I was all alone again.  The feeling that something icky was going on.  What made last night even freakier, was without thinking, I picked up that PRS guitar I bought four years ago today to play with while they were gone.  It's not one I normally play, but it's what I grabbed last night.  The only one that was light enough for me to play after my surgery.  The one that got me through cancer.  Just as my mind flashbacked to the bad time four years ago, I also subconsciously reached for the one thing that helped me get through it too.
As I approach what I consider my fourth cancerversary, I have been thinking about when I am done.  Is it five years?  Is it ten?  Is it when you quit going to the oncologist...I hope it's not that one, because I think he has been saying "just a few more years" since my second visit.  As far as my health is concerned, I think I am done.  I have been getting clean scans.  I have finally been dropping the weight I gained while I was sick.   And for the most part, I feel better than before any of this happened.  But I guess it's harder to gauge the feeling that we are done mentally being affected by cancer.  Because last night, I sat alone and scared and realized I wasn't as done as I thought I was.  Or maybe I am, because I grabbed that PRS, just like I did after my surgery, and played until I didn't have cancer anymore.