Cancer Flashbacks With Paul Reed Smith

I am well aware that it has been a while since I last posted on here.  I do have a reason.  Trying to type with a toddler in the house means most of your writing looks like this "aklsjoun   saiolkjdfslak  klafjl;a".  And even if he were not "helping" me on the keyboard, it is hard to concentrate on writing when you have a two foot tall individual that moves just shy of the speed of light, that you are yelling things at like "get your fingers out of the dogs' eyes", "no, the remote control doesn't belong in the toilet", "we can't blow bubbles outside right now, it's 14' outside, and dark", "get your fingers out of the dogs' eyes", "where did you find that, get it out of your mouth", "get your fingers out of the dogs' eyes", "no, the table lamp is not a toy", and "get your fingers out of the dogs' eyes".  (In case you were wondering, learning the parts of the face was a very challenging time for our dogs' vision.  Maybe we will have to find them a "seeing eye person".)

So, because of the delay, I am writing about an incident that happened in June.  I think we have all been in a situation where a sound, or picture, or smell has brought you back to something in your past.  For instance, every time I smell VapoRub, I think back to that time as a little child that my great grandmother rubbed it into an open wound.  It still brings tears to my eyes.  Well, for the most part I feel I am over this cancer stuff.  Sure, I still have a few more years of CTscans, X-rays, blood tests, and all of the other monitoring.  I am not exactly sure how many years, because asking an oncologist how much longer you need to see him, is similar to asking your parents on a road trip "are we there yet?".  I think the answer has always been "4 or 5 more years" (for the oncologist visits, not the road trip...it just seemed like it took 4 or 5 years sometimes).  Other than the endless doctors' appointments, I really don't have much to do with cancer.  Oh there is still the solemn tone from friends you don't see very often asking "How are you doing?"  But for the most part, I am living my life.

I love playing guitar.  I play like I play golf, I don't play particularly well, but I don't take it too seriously and I enjoy doing it.  When I had my surgery, I was restricted in what I could lift.  Luckily, just before I was diagnosed, I had found some cheap used Paul Reed Smith guitars.  They were the lightest guitars I owned, and were pretty much the only ones I could lift and play for a long time.  They were the one thing that was able to get my mind off how bad things were for an hour or so at a time.  When I finished my chemo, my family all pitched in and bought me a nice Paul Reed Smith for Christmas.  The guitar means a lot to me for so many reasons.  First I just like the guitar!  But it symbolized closing the door on cancer.  It meant a lot for my family to pitch in and get me something like that.  And it was something I spent a lot of time with during my "chemo brain" months.  So, a coincidental introduction to PRS guitars, ending up having a pretty significant impact on that period of my life.

Which brings me to what happened in June.  Every year, Sweetwater Music has what basically amounts to "musician porn" at their campus in Fort Wayne, Indiana.  Literally hundreds of manufacturers are there showing off all their new toys, letting you play with them, and they bring in dozens of endorsed artists (some more famous than others) to trick you into thinking that if you just had that equipment, you could make all those amazing sounds too!  Well, Paul Reed Smith was on hand.  Not just the company, Paul Reed Smith the actual person.  In my past, I worked for a record company, regularly hanging out backstage and on tour buses of multi-platinum and even diamond selling artists (diamond is ten million copies).  I was never nervous or star struck hanging out with rock stars, but being the geek I am, I was excited to see a guy that designs guitars.  

One good thing is, I was right at home with my fellow geeks, because there was a full auditorium of us waiting to see him (although, I was one of the few that showed up an hour early to stand in line, and made it to the front row).  I watched his presentation in awe when he talked about all the technical things that make his company's guitars sound so good.  I had heard he was good about doing "meet and greets" with his fans, and throughout waiting in line, and his presentation, and...waiting in line again to meet him, I ran through my head exactly what I was going to say.  I was going to tell him, how his products got me through some dark times.  Thank him profusely.  And maybe talk to him about the technical nuances of a quality guitar (not that I know what I am talking about, but I can fake it).  

The problem with be one of the first ones in the auditorium for the presentation, is that means you are going to be one of the last ones out to stand in line for the meet and greet.  The whole time in line, I ran over my little monologue in my head.  Over and over again, as the line grew smaller and I moved closer and closer to this guy who really has no idea that his guitar helped me with my cancer fight (although his company does regular donate to cancer charities).  Then the big moment, I am standing before THE Paul Reed Smith...and I feel like I am at the oncologist's office for the first time, all the emotion came flooding back from that day.  I felt the fear, felt overwhelmed, I felt like I was going to burst into tears...but I WAS NOT going to do that...no matter what!

So, I stood before Paul Reed Smith, handed him part of my guitar to sign.  And was afraid if I said anything I would have an emotional outburst.  So, in an effort to hold back this flood of emotions, I stood there looking like I was probably about to punch him.  He asked me if I would like the autograph personalized and my big speech that I had practiced over and over again, was now reduced to one word, "Tom".  Yes, all that I had planned on saying, all that I wanted to thank him for was boiled down to me barely uttering my own name through clenched teeth.  He politely signed my piece for me and I briskly walked out of there, trying not to break into an all out sprint as I headed to my car, hoping if I went fast enough I could outrun this emotional avalanche.  But I was also hoping if I couldn't keep it together, I would be far enough away that no one would see me.

Now, let me just say one thing in my defense.  The surgery I had to help prevent a different kind of cancer, has caused me to be a hypoglycemic.  And sometimes when people have low blood sugar, they tend to get more intense emotions.  And, because I am a big geek, I got so busy looking at musician porn, and standing in line an hour early, and sitting through a presentation, and standing in line again, that I went about 14 hours without eating (not a smart thing for a hypoglycemic to do).  So I will blame part of this incident on that, so as not to appear to be such a wuss.

So, I didn't get to thank Paul Reed Smith.  And to be honest, I don't know what he would have thought about it if I did.  It's not like he found the lump, or performed the surgery, or administered the chemo, but he was still important to my recovery, even if that isn't why he got in the guitar business.  But this incident says a lot about us cancer survivors.  You never know what is going to help us get through a hard time.  It could be a book, a phone call, visits from a friend, or a cheap used guitar.  And it is hard to feel "done" with cancer when you are still going to doctors' appointments every few months.  They tell you it's over with, but in the very next breath, tell you to come back in November.  And just like any other major event in your life, you never know what trigger will bring you back a memory or a feeling, that you may or may not want to experience again.  At least, I got to meet him.  I got something signed to me personally.  And I got something to eat so something like that didn't happen again.

Back To Normal Levels After Testicular Cancer

One of the things many people worry about as they undergo treatment for testicular cancer is how will this affect them afterwards?  Well, I finally received my answer.

One thing I was worried about was testosterone levels.  One of my nurse friends said it would be good to have lower testosterone levels because it would decrease my future cancer risks.  However, commercials are constantly pointing out how my becoming a fat, lazy slob as I get older has nothing to do with me being a fat lazy slob, but low testosterone (that they would be able to fix).  Feeling like I was in a "damned if I do..." position I asked my urologist about it.  I was told that high testosterone doesn't increase the chance of prostate cancer, but it makes it grow faster if you do get it.  And low testosterone may make you more inclined to be a fat, lazy slob, but it doesn't really cause any health problems on its own (being a fat, lazy slob does though).  Worried that my levels would be half, he told me how most duplicated organs aren't working 100%  all the time anyway.  That is why people with one lung or kidney can still function, because the remaining one turns it up a little.  After going through a bunch more explanation in doctor talk which I kinda blanked out on, we decided to test my testosterone and the results came back that I was at normal levels.  So, I have to blame being a fat, lazy slob on something else...like the lack of global warming in my area making it too cold to go outside.

Recently, my wife went to her "female doctor" and somehow came home with an appointment for me!  I get enough doctors' appointments scheduled on my own without having to do someone else's homework too.  Anyway, I was told to go back to the Jerkatorium (official doctor lingo for a sperm bank) and see what my levels were, just in case we ever want to have another kid, which I am told we aren't having, but do this just in case we change our minds one day, which isn't up to me anyway, and it is always a woman's prerogative to change her mind so I should just keep my mouth shut...or something like that.  I will spare you the details of the inner workings of the Jerkatorium, because I have previously written about that.  But what I did find disturbing this time was the addition to the "library" of DVD "aids".  While carefully pushing them around trying my best not to actually touch anything in there, (because after all I know what people do in that room because I was about to do it) I noticed most of the DVD cases were empty.  I wish I could immediately decontaminate everything I am wearing as soon as I leave that room, so it certainly would never cross my mind that I should grab a integral part of the functioning of this room and bring it home with me.  Ewww!  Anyway, we will just fast forward to the results.  That came back saying I was normal too!  Not normal for a testicular cancer survivor, but normal for a normal person...assuming normal people go into a room, look at dirty magazines, leave their business on the counter, and occasionally steal DVDs.

So the moral of the story is, don't steal from the Jerkatorium because you DO know where that stuff has been....NOOO, that's not the moral of the story!  The moral is, not only is testicular cancer a very survivable cancer, but you can regain your normal life back.  You won't be half a man.  You can still have normal levels of testosterone and swimmers, and even if your tests results don't come back normal, you can easily fix the testosterone levels, and if you froze your swimmers like I did before surgery, you can still have children or use it for disgusting pranks to put on YouTube and none of your friends will ever eat or drink anything at your house again.

And there are even some positives of being part of the One Nut Club!  I will close with this Top 10 List:

Top 10 Benefits of Only Having One Testicle

10  You only have to manscape half as much (if you are a manscaper).
9  When you test your levels, you health insurance company is actually paying for you to look at porn!
8  You have more room in your underwear.
7  Not as much to get sweaty down there.
6  People are afraid to use the phrase "Don't go off half cocked" around you.
5  When it is really cold out you can say "I am freezing my ball off!"
4  When your toddler is flailing around like a twerking jellyfish, your chances of getting hit in the nuts just dropped by 50% (anecdotal evidence).
3  Your self exams are done in half the time.  Don't forget to do them!
2  You can make the comment "I would give my right (or left) nut for ______"  then you could offer to go get it from the surgeon.
1  When you wear Speedos you only have to worry about stuff slipping out on one side. 

When Are You Done With Cancer?

As I write this I am about two and a half years out of my cancer diagnosis and treatment.  Aside from a little skin cancer scare (which turned out was nothing) one could say I have been done with cancer.  However, that is not exactly how it works in the cancer game.

There are so many questions as to when you are officially no longer a cancer patient.  Was it the surgery?  The chemo?  When you quit going to an oncologist?  Or when you finally pay off all your medical bills? (In which case I will never be done.)  In many ways I no longer feel like a cancer patient, but at the same time, at the beginning of every month I look at my calendar and see what doctors appointments I have this round.  It is hard to feel "well" or "cured" when you are sitting in a waiting room all of the time.  I mean who needs a People magazine subscription when you can read it for free every month while you wait for the nurse to call your name?  The good news is the frequency of the appointments slowly grows further and further apart.  I think I am down to CT scans once a year now (so I only have to drink a half gallon of nasty tasting water a year).

The funny thing is, because of the doctors' good reports you feel like your not well.  Because of the type of work I do, I tend to run into people that I haven't seen for months or even a year and they always ask how I am doing  With the frequency of doctors appointments my answer is usually,"Well, I was just at the doctor and they said I was fine."  That is the Catch 22 of being in monitoring, you have to see an "ist" each month (oncologist, urologist, gastroenterologist, etc.) but at least they say you are doing good each time.  You don't feel like you can say "Oh, the cancer thing is over." because you are still seeing an oncologist, but at the same time you don't feel like a real cancer patient because you are not having to go through any treatment.

On one hand, it is nice to have the peace of mind every month that you are safe for four more weeks.  On the other hand things get so routine, you wonder why you are paying more and more for something you could probably do yourself at this point.  Heck, I am in and out of my urologist's office so fast, I could probably just drive by his office slowly with my scrotum hanging out the car window and toss out my co-pay.  

I think the biggest part of not feeling "over" cancer is the mental aspect of it.  Every bump, twitch, even feeling tired when you don't think you should makes you wonder if just maybe it's something bigger.  And not even your thoughts are safe.  My one-year-old had been going through a phase where he wants me to hug me, or have me hold him, or just lean against me.  Most people would just understand it is the clingy phase that all toddlers go through, but my mind wondered if he wasn't sensing something, that maybe I wouldn't be around much longer and he needed to get his quality time in while I was still alive.

Even happy dreams aren't safe.  I know two people that have flatlined on operating tables and come back to life.  They both tell of people that have died greeting them at the end of the tunnel and telling them that it's not their time yet to go back to earth.  I have had some friends die and some family members die, but only one person in my life has died that I saw everyday, and would spend an hour just talking to everyday about whatever.  Well, that person was in my dream the other night.  He welcomed me into Heaven, showed me around, and we picked up on conversations we started before he died.  I woke up feeling so good knowing that if I died, this person would be the one that brought me through the tunnel and took me to see my other friends and family that have already passed.  But that good feeling quickly turned to dread, as I wondered why I was dreaming about dying and does my body know something that it hasn't shared with my brain yet.  Maybe part of my brain does know and it is just not sharing the information with the rest of my brain the same way it does when I ask it where I put the car keys.

The biggest joy I have in life is watching my son play, which we weren't even sure we were going to be able to have when all this started.  Even while sitting there just watching him run around like a drunk kamikaze gymnast, I worry about recurrence and not being around to watch him grow up.  Or not being around and maybe his only memory of me will be me yelling at him to quit splashing in the dogs' water dish (which to be fair is something I do approximately 1500 times everyday).

So am I done with cancer?  The doctors say "yes" but then tell me to schedule an appointment to come back and make sure it's still "yes".  Physically, outside of underwear not fitting quite the way it used to, I feel like I am done with cancer.  Mentally, the chemo fog has cleared up, but there is always that cancer cloud hanging over me, just like a summertime meteorologist's permanent "30% chance of storms".  The ironic thing is the more my son shines the more I worried I get about that cancer cloud.  But until then I will enjoy every second I get to spend with my son, even the hours on end I spend pulling him out of the dog dish, and hopefully live long enough to teach him how to check for testicular cancer on himself one day.

What's So Super About The Superbowl Or Ultimate About The UFC?

As the Superbowl draws near, I started to think more about sports.  I have never really been that into sports.  The only sports I would watch were sumo wrestling (which is very rarely on television here in the the U.S.) and I have switched from watching boxing to Ultimate Fighting Championship/Mixed Martial Arts fighting.  Recently I have found myself not even being that interested in watching UFC.  What does this have to do with cancer?  I will explain.
When I worked in the music business, it was not enough to just be able to write good songs and play an instrument well.  Whenever we submitted an artist to our superiors, the first question we were asked was "What's their story?".  That is why you may know that Jewel was homeless and lived out of her car while she was a struggling musician, or that Robert Johnson sold his soul to the devil at the Crossroads, or that Justin Bieber was found on YouTube, or that every boy band ever created is a complete fabrication and they all suck.  The point is, there has been a long history in the entertainment business of selling story along with the product.  If someone overcomes something, or has an interesting back story, for some reason we are more likely to buy their products.
Unfortunately, in the entertainment business today someone can NOT be famous unless they have tragic beginnings, no matter how non-tragic those beginnings actually are.  In the past, when I wanted to watch two consenting men or women beat on each other for large amounts of money, I could watch the fights on Strikeforce MMA and they would show the fighters walk out, beat on each other, talk to a commentator about beating on each other, thank God for allowing them to beat on one another, and then the next fighters would come out.  Now the UFC is pretty much the only one left in the fight game, and their style is much different.  You can't just watch a fight, you have to learn about the struggles in their life before you can watch them beat someone.  Because everyone has to have a story, whether one actually exists or not, some stories are as tragic as "Although the Damien 'the Orphan Slayer' Diablo has been on a roll lately, in the beginning life was not so easy.  While all of his friends were riding around on Razor Scooters, all he had were his older brother's hand-me-down Rollerblades.  At night while other kids were on their Playstations, he was stuck playing those games you buy at Dollar General, that run on a 9-volt battery and plug into the back of the television, and only play nine games, most of them just color versions of Pong..."  In other words, many times the "tragic stories" are still better than the life you lived growing up.  So now, a fight that may last all of 45 seconds, has a 20 minute featurette preceding it.  The result of hearing the "tragic stories" on how the fighter wanted a new Camaro for their sixteenth birthday, but only got a used Trans Am,  just make me resent both fighters and I root for them both to lose.
The stories make me think about what really matters.  I have said on here before that my cancer fight was easy compared to what many have to go through.  The fact of the matter is, if you are the one going through the cancer battle, then the fight is huge to you.  I had some rough patches in my chemo, but if needed, I would not hesitate to go through it again.  When I see the "Titantic Struggle" referring to a fight that at most last fifteen minutes, I think how I would have preferred to have gone through a fifteen minute pommelling than weeks of chemo side effects.
As fighters and football players are praised as great warriors or heroes on the field, I ask myself what they have accomplished.  My fight was easy.  Although I was very worried about the cancer spreading and I still worry about the cancer recurring, I was never that worried about my cancer killing me (since we caught it soon enough).  But some others in my support group were in much worse shape.  One has had stage 3 prostate cancer longer than most NFL players' careers.  There was a guy who had to have a hole cut in his skull so they could install a bag that would deliver his chemo directly to the tumor in his brain, all while trying to reassure his two young sons that everything would be fine.  I saw the fear in one breast cancer survivor's eyes as her two biggest supporters in the group succumbed to the very same disease.  There was the guy who's rare skin cancer camped out in his lungs and at best the doctors could only slow down the growth of the tumors.  Those people are fighters.  Those people have "stories".
All sports, even the ones in which the object is to completely obliterate the person standing in front of you, have someone standing next to the competitors to make sure no one gets hurt too badly.  Cancer patients don't have that.  They don't have someone with a rule book to make sure no long term injury occurs.  Unlike televised sports, in the cancer game, there is a real possibility that the player may die.
I am not saying that sports are stupid or don't need to exist, just that they need to be put into perspective.  Tell me the guy had to eat generic Ramen noodles in college.  Tell me that the guy had a deadbeat dad.  Praise the guy for being able to catch a ball well, or being able to take a kick to the face and still be able to punch the other guy.  But don't talk about a "fight to the death" and "struggling to stay alive", in fact us testicular cancer survivors don't even like the phrase "dead ball".  I wish the sportscasters would realize that it is just a game which outcome really doesn't mean a damn thing in the big scheme of things.  We have many people in this world that really are in the "fight of their lives" and that is who I am rooting for.