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.

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.

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.

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 http://www.testicularcancersociety.org/testicular-self-exam.html 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 livestrong.org 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.

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.

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.

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.

My First Father's Day

Well if you weren't able to guess already, we were able to get pregnant.  The swimmers we had frozen before I had chemo apparently thawed out just fine.  However, my "friends" (and I use that term rather loosely) were quick to point out that they could have given me any sample and I wouldn't know the difference until the baby comes out.  After all, you go the the "bank" they give you just a regular insulated coffee mug with a little test tube inside with your name on it.  It seems like for as much as we paid for me to look at their dirty magazines and practice a little self abuse, they would come up with something a little nicer than some cheap looking insulated coffee mug like you get at trade shows for free from vendors you never heard of.

We were actually visiting at my parents' house when we found out the swimmers reached their target.  My parents were overjoyed, which is surprising because people normally have totally different reactions if somebody shoves a urine soaked stick in their face.  It was at this point that it dawned on me that I don't know nothing about birthing no babies.  The coming months were filled with me cramming my head with everything from how to change diapers to how every single thing your child touches, eats, sees, smells, and hears will do irreparable damage to it and make you a bad parent.  So, I will admit, I am one of those parents who is double checking every little thing that comes near my child to make sure it has passed a thirty-four step inspection.

The other thing I didn't know about babies, was apparently you need approximately 43,560 square feet to hold all the items that your new baby will absolutely not be able to live without, use once, then outgrow, and need to be stored for any future babies.  And while we are discussing things I didn't know, when you are buying stuff for a new baby, everything made previous to the point that you arrived at the cash register at the baby store, is very dangerous and should be burned and the ashes locked in a safe and the safe thrown in the ocean (safes are located in Aisle 4 and you don't want to get a used safe).  Personally, I think the baby industry (and there is definitely a baby industry) and the Consumer Product Safety Commission get together twice a week to declare everything that babies had before now, is harmful and must not be used under any conditions.  Which makes perfect sense, otherwise all those cribs, highchairs, and bottles we all grew up on, and apparently survived, would still be in use today, meaning we would not need to buy new ones.  When you tell people you are going out to purchase said new products many older people (i.e. people that bought baby products last year) will say "you can just borrow mine" and you respond "they (whoever that is made up of) say that is unsafe now" and the response is "well it never hurt (insert name here)".

We went through all of the doctors' appointments where you listen to sounds that mimic a cow trotting through mud and pictures that look more like a black and white radar scan of an approaching cold front than any sort of mammal, but yet you still get choked up and excited.  And then there is the time that you stare at the screen, trying to see if the jet stream is going to cause a Nor'Easter when the nurse looks at you and smiles and says that "jet stream" is actually a penis.  Oh the feeling that goes through a future dad when he first sees his son's jet stream.  Already I was thinking of all of the tools I would be buying him and all of the time we would spend working on cars together (although, that probably would have been the case if we were having a girl too).

I will admit, as the big day approached I got more scanxiety even if a scan wasn't imminent.  I had waited so long for a child that I was so paranoid something bad would happen before I would be able to meet him.  And let's face it, less than a year before, I had lost my job, got cancer, and we had a miscarriage in a matter of a couple of months, so I am not unfamiliar with bad luck.  But after a lot of anxiousness and praying we finally were told to check into the hospital.

For anyone unfamiliar with labor, I will try to explain what happens.  You rush to the hospital where your wife seems to be in a lot of pain and there is a lot going on, but on the outside nothing really seems to be happening.  While all this is going on, every single person that is on your hospital floor will walk into your room, shove his or her hand underneath your wife's gown and loudly shout out a random measurement ("6 cm!", "80%!!", "10/6!", "less than 12 parsecs!!").  I think even the kid that delivered our food shouted out "THX1138!" before she left.  All I know about these random numbers and measurements was the baby was still bigger than that.  So, after close to a day of "labor" that only seemed to produce an exhausted wife and goop that I wasn't sure was pre-baby goop or left over lube from the constant measuring, the doctor gets down and looks like she is trying loosen an oil filter on a Honda and says,"Well, he's not going to fit, but you can still push for another hour if you want."  Although I liked our doctors there, that has to be one of the dumbest statements I have ever heard in my life!  As you can imagine, my wife was over the whole push-measure-push-lube-push-measure-measure-measure-push routine.  So it was off to surgery.

I walk into the operating room after they had prepped my wife and I see her laid out on a table, tubes here and there, a curtain, and a line drawn across her stomach.  The doctor said, "You can stand here on this side of the curtain as we cut or..."  I don't remember anything after the "or" because I really didn't care what was on the other side of the curtain as long as I was on that side of it.  I was even more glad I had chose that side after the procedure started.  I don't know what they were doing on their side of the curtain, but on my side of the curtain my wife was being pushed and shoved around on the table like she was the little girl from the Exorcist (minus the head spinning around).  Finally the shaking stopped and they walked around the side of the curtain with...a purple baby.  The comments my "friends" made about switched samples are running through my head and I search my memory for any purple family members (although there was that one distant aunt...), but after a quick wipe down he became the most beautiful, non-purple baby I have ever seen.  Any doubts of grabbing the wrong coffee mug at the sperm bank, were gone for good when one pediatrician at the hospital told us that our new baby was tongue-tied and this would lead to a lifetime of speech impediments, difficulty eating, crossed eyes, sloppy trumpet playing, inability to make friends, receding hairline...basically he was going to turn out like Quasimodo without the musical ability.  This caused a huge smile on my wife's face and mine.  Not because we wanted my son subjected to a lifetime of being a social pariah, but because I am tongue-tied and although sometimes I may have the problems the doctor foretold, it is not from being tongue-tied.  It was like a little sign from God saying "See, now you know for sure he is your son."

In fact, I think every single part of that experience was a blessing.  I used to think Father's Day was just another holiday where you give people stuff (or realize you forgot to buy stuff to give to people until the last minute).  But today I have had to hide my emotions as I played with my son, thinking about how much happened to get him here and how hard I am going to fight to be around as he grows up.  And one last thing on being a father after having testicular cancer/chemo, the procedures and processes involved in making this happen are very expensive.  I had contacted Livestrong during our efforts and received a long list of organizations willing to help make our miracle happen, many of them offering their services for free.  The earlier you contact these organizations the better, as many want to help from the very start.  Luckily for us, we were able to have our miracle without needing to use these organizations.  But, we are keeping all of the doctors' bills to show him anytime he asks for anything expensive.

(Creating) Life after Testicular Cancer.

I know I was supposed to write this last week, but by then end of today's post you will understand why I am not always able to post when I want.  As I have mentioned in the past, I was laid off from work exactly two weeks when I was diagnosed with testicular cancer.  Two life changing events that came back to back. What only my very closest friends know what there was actually a third event that happened right after that.

We had been wanting to start a family for a while, and were actively trying for around a year.  A few days before I started chemo we found out that we were pregnant.  It seemed like the typical feel good story, boy loses job, boy loses ball, but before he lost that nut boy and girl get pregnant.  There was a whirlwind of emotions, it was something we desperately wanted, but the timing couldn't be worse.  Chemo works by being a very nasty drug that is easily absorbed by anything that grows quickly in the human body, like cancer cells, hair, taste buds, and unfortunately babies.  Because of this the first week I had to take tons of precautions around my wife making sure that she did not come into any contact with anything that may have the chemo in it.  Even using the bathroom involved closing the lid, covering the lid with a heavy towel, and flushing the toilet twice.  I never realized how long it takes a toilet to flush until I had to stand, weakened from chemo, waiting for it to finish flushing twice so I could remove the towel and go back to my normal routine.

After we went through all of this trouble, we lost the baby.  It was very early in the pregnancy, and to say we were stressed during this time would be an understatement.  What we found out after this was the staggering percentage of first time pregnancies that end in miscarriage, however that didn't make us feel any better.  It was a third blow to us in less than two months.  It was the ray of hope we had been focused on through chemo.  Of course many things ran through my mind, like was it my fault for missing a chemo precaution and maybe I should have postponed my treatment.

The next few weeks were a mass of confusing information.  Some people say to try again right away, others say wait.  Some doctors say don't try so soon after chemo, others say it is fine the swimmers either die from the chemo or are not affected.  My urologist said to just give up for at least six months, but my oncologist urged us to see a fertility specialist because we "needed something good in our lives".  And he was right.

The first thing a fertility specialist tries to determine is which partner is causing the trouble.  This makes tons of sense, I mean treat the person with the problem(s), right?  So, my poor wife goes through a series of tests that look like the set of a alien abduction movie.  I still have nightmares about some other the stainless steel contraptions I saw.  I also had to go through a series of grueling tests that involved me going into a room, and being provided with dirty magazines, dirty movies, and a cup.  It was horrible for me, mainly because I had already read all of the magazines when we "banked" some samples before my surgery.

So after my wife goes through her series of probings and shots, and I watch a few movies, we find out that...surprise surprise the problem looks like it is with the guy with the testicular cancer and chemo.  Who would've guessed?  The doc was very supportive and said with very little intervention, we could use my frozen stuff and probably be successful.  No nasty chemicals, no danger of having "Plus 8" after our names or being chased by reality TV producers, for the most part things are pretty normal...except one.

This technique required me to give my wife a shot in her gluteus maximus the night before the procedure. Our doctor was very supportive and involved so they even drew and "X" on the targeted butt cheek to show the exact spot that the injection needs to be placed.  Well, the first round didn't work, so when went for the second try the next month, I asked the nurse if instead of an "X" if she could draw a happy face so I could "jab it between the eyes with the needle".  See, these are the kinds of suggestions that would normally get you thrown out of your wife's doctor's appointments, but in our case the nurse drew the happy face.  This seems all very funny at the doctor's office, but it results in uncontrolled giggling when you are sitting there with a giant needle getting reading to lance a happy face on your wife's posterior.  For some reason, my bent over wife did not see the humor in the situation which only resulted in even more uncontrolled giggling from me.  Luckily, we did not have to try it a third time because my wife said she was working on a few ideas of what she was going to have the nurse write on her butt to greet me the next round.

So, I will leave on this cliffhanger, did we get pregnant, did we have a baby, is the baby keeping me from blogging as regularly as I would like?  I think you know the answer, but I will talk about it more tomorrow.

Back And Prepared To Fight If Needed

I know it has been a very long time since I have posted last, and I will explain the reasons for that tomorrow.  Right now, I would rather talk about the catalyst that made me write today.

At my previous job, in the eight years I worked there, seven of us had been diagnosed with cancer (that I know of).  Now, I have been too lazy to actually look up statistics, but I think out of an organization of 100 or so of us that is a little high.  There was a person who was diagnosed with breast cancer just a month or so before I was diagnosed.  Not a close friend, just a work colleague, but still as someone I worked with I had gone through the trouble to go buy a get well card.  Like a lot of things in life, it kept getting passed over until I heard she had made it through treatment without any problems at all.  At that point it seemed a little silly to send a get well card.  Then out of the blue, I got one from her.  That really meant something, because since I had been laid off from the company, I wasn't aware that too many people even knew of my cancer diagnosis.  So it was a little pick me up that she took time out of her recovery to help me with mine (especially when I procrastinated too much to send her a card).  She was also a source of hope for me because other than her and I, everyone else that was diagnosed has already died of their illness.  It was nice to know that two of us had escaped the curse.

Fast forward to this past weekend.  When talking with a different former work colleague, I was informed that this person had passed away last month.  Apparently the cancer had come back in her liver this time and she was unable to fight it.  I was sad to hear of the loss of her.  Last I knew she was past all of this cancer crap.

What happened next surprised me more than I ever could have imagined.  That meant I was the last survivor standing.  All of a sudden, many of the feelings I had the first day I was diagnosed came flooding back to me.  The most prevalent thought in my mind was "does this mean mine can come back without warning as well?"  It was about an hour from when my friend told me of our colleagues passing before I could tell my wife.  I just had a lot of the same scared feelings all over again.

I have had a lot of good things happen the past few months (which I will talk about tomorrow) and to be honest cancer was something I hardly thought about at all anymore.  In fact, after yet another screw up with hospital billing I had even contemplated foregoing CAT scans because I was tired of dealing with paperwork afterwards.

I told another good friend of mine that I felt like I was in an 80's horror flick and that the evil cancer has been picking off the seven of us, and I am the last one being chased.  She lightened the mood by pointing out in horror flicks if I had been black or a busty blonde, I would have been one of the first to go.  At last check, I am neither African American nor a busty blonde (although if I don't start working out more, I may develop some manboobs).  I told her I am hoping that I am the one person that always lives in a horror flick just in case they want to make a sequel.  Although, I certainly don't want to go through all that again.  For one thing I would have to change my blog from the "One Nut Wonder" to the "Nutless Wonder" if I went through all of this a second time.

I just couldn't believe how quickly I could be taken back to a place I thought I had left behind almost a year ago.  After all, during my oncologist visits, I seem to spend more time filling out insurance paperwork that I do with the actual oncologist.  My X-rays and CAT scans are getting further and further apart.  But this one bit of news brought me right back to a week after chemo.  So much so, that I contracted some deadly funk yesterday, be it food poisoning, the flu, Voodoo curse, or whatever gives you 102 temp, stomach cramps, and body aches, and the whole time in the back of my mind I am asking myself "Is this really just from cutting off some Haitian on the Interstate or is this an indication that cancer has comeback somewhere else?"

Regardless, I will try to enjoy the blessings I have and if the day comes where I have to star in "Cancer II, the Recurrence"  I will do my best to make it through the sequel to fight again.  Now I just have to think of a witty catch phrase...

An Xray, 3 Blood Tests, And A CATscan Down, Now Shove A Camera Down My Throat

I am finishing up my latest round of scans.  In the past three weeks, it seems I have been tested every other day. I haven't actually been tested every other day, but medical providers have still found a way to bill me every other day.  So far I have finished a chest X-ray, a CATscan, CBC, tumor marker blood test, and in a matter of hours a upper endoscopy (with jumbo biopsies, YIPPEE!), oh yeah and peeing into the random cup every once in a while too.  I just hope I was supposed to pee in that one cup, because the nurse gave me a funny look, and I don't remember specimen cups saying "Moe's Southwest Grill" on the side...

The X-rays were as expected.  I raise my hands above my head while the nurse shoves me against the wall like she's on COPS and I am an unruly suspect (one time I accidentally yelled out "Don't tase me bro" during the test).  The blood and urine tests were pretty routine as well.  I get asked for a body fluid, and I deposit it into whatever receptacle they hold in front of me.  The only problem was a slight miscalculation on driving time/fluid intake, which required me to make the receptionist wait for my insurance co-pay until after I gave them a sample.

The one thing I wasn't expecting was a CATscan.  When I decided to do chemo over testing (mainly dozens of CATscans) I knew I would still have to get the occasional CATscan, I just wasn't expecting it to be so soon after my last oncologist appointment.  As soon as he ordered it, I had flashbacks of the taste of the contrast dye and the associated CATstipation.  Not wanting to roll around on the floor in impacted and backed up pain again, I had taken two liter bottles of water with me to do some mega-hydrating on the drive back from the hospital.  Luckily, I didn't start drinking them yet, because when I arrived I was told I would not be drinking the slightly flavored chalky substance.  They had a new water based contrast, but I had to drink a liter of it in an hour.  Still skeptical, I apprehensively took a taste.  It tasted like Terre Haute water, which for those of you that haven't been to/smelled Terre Haute, IN, it kinda taste like...well...have you ever put a cooler away and forgotten to drain it?  Well, it kinda tastes like that smells.  Not good, but not bad either, and definitely better than the nasty, chalky, constipatitiony, bottomless cup of sludge that I had to drink before.

Within a few days, I got all of my results back, X-ray's and scans were clean.  Urine and blood tests were normal, and tumor marker's still dropping.  So now I am preparing for my endoscopy tomorrow.  My preparation involves mainly not eating after midnight and not sleeping.  I have literally had more scopes than I can count, all I know is that I am in double digits, and I have developed a routine.  I stay up late the night before, I go into the hospital barely awake, I get some Demerol shoved in my vein, and I wake up with my wife giving me dirty looks because I apparently won't wake up and I ask the same questions over and over again.

See, in my long history of scopes, there are two things I don't like about them.  One time I woke up when they snapped the plastic guide between my teeth, and the feeling/sound was not a pleasant experience.  Now they say you don't remember anything from the scope, but obviously if I just told you about that, I did remember it, because they don't put that thing in your mouth before you go in there and it is out before you wake up, so the only way I would know about it is to wake up during the procedure, and remember it (and I also remember hearing the doctor say, "He's waking up, give him so more.").  The other thing, is for some reason the oxygen tube that they stick in your nose, makes me feel like I am drowning.  OK, OK, I will wait for you to quit laughing at me.  Are you done?  So, I don't know why I have that feeling, but I do.  If I am totally out, it's no big deal.  If I am kinda out, I wake up, thrashing saying I can't breathe (which just by saying "I can't breathe" it proves I can breathe, but anyway), and before I know it I am sedated again and I wake up with straps on my arms.  For the comfort and safety of myself and the nurses attending to me, I have found that we are all much happier, if I am completely out of it during the scope.

As far as tests go, an endoscopy really isn't that bad.  The bad thing is, they keep you from eating for so long before, and for my condition they take out large biopsies in my throat to send to a pathologist, which leaves me waking up starving, but yet it hurts to swallow.  It's like some cruel joke the doctor's and nurses play on me, maybe in some sort of retaliation for thrashing around during the procedure acting like I'm drowning.  At any rate, I am ready to get this test over with and anxious to hear my results.  With this test behind me I am through with doctors (for me) until November.  Hopefully, the nurses will loosen my straps tomorrow and I can come home and tell you how everything went.

Cancer Made Me Fat And Apparently Fat People Sweat A Lot

OK, so I guess cancer didn't directly make me fat, but it certainly helped me pack on some pounds.  Between the inactivity following my surgery, the inactivity following chemotherapy, and the fact that my chemo taste change didn't effect my love for all stuff fattening, I have gained weight.

I realized this has become a problem when my wife punched me in the middle of the night, ripped the blankets off my previously slumbering body and said, "You're sweating on the clean sheets."  We do have other sheets, and I could even wash them every single day, but she thought all of these things through and decided assaulting a sleeping cancer patient was the best course of action.

While hurting myself mowing the lawn the other day, I noticed I seemed to be sweating more than I had in the past.  I first attributed that to my high metabolism and my well toned body, then I realized I didn't have either one.  And it seems just about anything can cause me to break a sweat anymore, cleaning around the house, working around outside, walking the dogs on a hot sunny day, walking the dogs on a cold rainy day, walking up the stairs to get a Little Debbie, eating a Little Debbie, thinking about eating Little Debbies, typing "Little Debbie", and apparently sleeping.

There seem to be another side effect to my recent weight gain as well, my hypoglycemia seems to be getting worse.  This is a condition where my sugar will drop and I have to...well find something with sugar.  They make glucose tablets designed to get the sugar back into your system quickly, and you would think something made to shoot up your sugar would be made at least remotely sweet tasting, but it really taste like compressed baby powder, except drier.  This hasn't been a problem until I started getting more and more active lately.  Apparently your sugar doesn't drop when you sit around all day ingesting sugar.  Seeing some of the weird things people get disability payments for these days, I wonder if I can get the government to pay me to sit around all day ingesting sugary goodness...and maybe even pay for my sugary goodness as well.

But therein lies the irony in my whole situation.  I want to get more fit and be more active, which causes me to hurt myself, which causes me to be less active.  So, to make up for that, I try to eat healthier and avoid sugary stuff, which causes my sugar to nosedive, which forces me to eat more sugary stuff.  You see my dilemma.  I can't complain too much though, if the worst lingering effect of beating cancer is having to sit around on my rump eating Little Debbies and sweating.  But if I didn't complain about something, I wouldn't have anything to write about today.  So, here I am feeling a little better, but recovering a little slower.  Luckily I don't have any pressing projects anytime soon that will require me to exert myself too much and we have a large stash of crappy food to keep my sugar levels up.  I guess life ain't too bad after all.

"If I Leave You It Doesn't Mean I Love You Any Less"

For the second day in a row I am starting off with a Warren Zevon quote.  While Warren was dying of mesothelioma he wrote a song to his wife with the line "if I leave you it doesn't mean I love you any less".  It was a touching line when I first heard it and a much more powerful line after my cancer diagnosis.  I think the first reaction when you are diagnosed, is to wonder if you are going to survive.  The second reaction is if you don't survive, what will that do to your family?  What a brilliantly simple way of expressing how we feel.  If cancer takes us, it doesn't mean that we want to go.

I "graduated" from the Wellness Community this week.  I won't say I am 100% over all of this stuff, heck for one thing I haven't officially been released from the urologist yet, but cancer is no longer the prevailing thought in my mind anymore.  Granted there are other things going on in my life right now that are taking my focus off that crap, which is a good thing.  I don't know if I would feel this far removed from cancer otherwise, but the point is I do and that's all that matters.  It's hard to believe my cancerversary is coming up in just a few months!

The Wellness Community and more importantly the people in my support group have been very...well supportive.  I was hoping there would be a big crowd there so I could say "bye", but there was only the facilitator and one other guy, who happened to be my favorite guy and the one that helped me the most.  This particular guy (without giving any identifying information, which is a no-no for a support group) has lived with cancer for literally decades.  Not a survivor, LIVED WITH CANCER as in still has cancer!  There is another in my group that has lived with cancer for about a decade as well.  Do you know how comforting that is to someone who just got diagnosed?   Even if you aren't cured, here is living proof that you can live with cancer and look like a normal non-cancer-having person!  And the thing I was most impressed with these two individuals was they were the most upbeat of the group.  They weren't cursing their maker or bitter at the world.  They were positive.  With just my favorite guy in my final meeting, I was able to spend a lot of time telling him just how important he has been to my emotional recovery.  I wish there were a couple of others there that I wanted to thank, but that's what e-mail is for.

Now to complain about my group for just one second.  One thing I did get off my chest was there was an incredibly negative individual that almost caused me to quit the group.  This person was CURED but didn't want to believe it and spent the whole meeting going on about how if you had cancer once it stays in you forever and it can pop up anytime, even if the doctor says you are in remission or even cured.  That is not something I wanted to be around just out of my surgery and facing chemotherapy.  Luckily, the lady from the No Boobs About It blog warned me that there is one of those people in every group, to just try to ignore them.  I am glad she told me that.  The only other complaint I have with my group (and people in general) sometimes when life looks the darkest, people give up on you.  Most cancer patients have ups and downs in their care, and some people in the group would start referring to people in the past tense that were struggling in their fight.  The whole time Monty Python and the Holy Grail was running through my head "I'm not dead yet..."  All of the people referred to in the past tense have gotten better!  Thank God (literally) that they had better outlooks on their own lives than some of their supporters.

But all in all, I loved the Wellness Community and the support everyone gave me.  I didn't really want to leave, but I didn't feel it was right for me to be there anymore, since I feel less and less like a cancer patient and more like a cancer survivor.  I wanted to thank everyone for what they did with a gift, however I couldn't just give gifts because I am still unemployed and don't have a lot of money flowing in right now.  I would have liked to cook something and bring it in (and let's just pretend for a moment that my cooking is tolerable) but when you are on chemo, you can be super sensitive to tastes and smells (I still won't touch pasta and shun salt, two things I enjoyed before chemo) so food is not even allowed inside the room we meet in.  So that left me with my favorite thing, music.

Not only have I worked extensively in music running record stores, as a club DJ, and even with a record company being required to hang out with rock stars for three years, but I have always used music to alter my mood and relate to others.  Back in the day, years before I even met my wife (if she is reading this) I would make mix tapes and CD's to open doors to hot girls that would inevitably ask for more CDs and less of me.  More recently, I boil my music collection to moods.  I have several CDs I put together just to keep me awake on roadtrips.  I have CDs I made to listen to just when I want to sing loud in the car with no one around.  I have a CD I made to listen to when you are in a pissed off mood (which I largely gathered from my wife's music collection, I don't know what that means, I'm just saying...).  And I have made CDs just to put me in a good mood.  So that is what I did, I made CDs for my group, happy CDs.  You know, songs that are just impossible to be sad while listening to, stuff like LFO's Summer Girls, Spice Girls' Wannabe, and Hanson's MmmBop...OK, I am lying, I like most people over the age of two and with most of their faculties hate those songs.  That was just a list of my sister's CD collection.  (The funny thing here, is I have to approve all comments before they are posted, so there is no way for her to refute this on my page.  But I am sure there will be retribution on hers.)  But I did put together a list of twenty songs from 1952 to the mid 1990s that just make you feel good.  I don't know if they will appreciate them or not, but even if they don't, at least I gave them a new shiny coaster.

So Thursday, Warren's lyrics held a different meaning to me.  I didn't want to leave the friendships, but it was time for me to leave the group.  And although I can't specifically identify people or illnesses, I will vaguely take a moment to say some "thank yous".  Thank you Bill for showing me how one person can face cancer and act like...well someone that doesn't have cancer.  Thank you Susan for having that magic folder where much like a Magic 8 Ball, you ask a question, you reach your hand in, and pull out a print out with the answer.  Thank you Ann for showing just how hard one human can fight, and still retain grace and dignity the whole time.  Thank you Cary for taking a bad situation and turning it around for something good.  And most of all thank you Ned, no doubt your family sacrificed a great deal for the benefit of so many others, and I will never be able to express my gratitude sufficiently.  And there are many others at the group that helped me, and I don't mean to play favorites here...but I am (did).  And it's not like anyone actually reads these anyway, so there is not really anyone to offend with an omission.  Even though I didn't place that Warren Zevon song (Keep Me In Your Heart For A While) on the CD I made, because although very poignant and beautiful it's also incredibly depressing, I graduate from and depart the Wellness Community with those words in my heart and mind, "If I leave you it doesn't mean I love you any less".

If Coughing Were A Sport, I Would Be An Olympian!

So a couple weeks back I wrote about having a cold.  Well, the sniffling stopped, the sneezing stopped, and the coughing...well it never went away.  In my typical, stubborn, I-don't-want-to-go-to-the-doctor sort of way, I decided the best thing to do was to ignore it and keep coughing.  That changed the night my wife asked why I was breathing so fast.  I said I wasn't breathing fast, especially since I was just sitting there, not exerting myself with heavy exercise like bending over to tie my shoes, reaching for more cookies, or grabbing the remote to change the channel.  When she pointed out that I indeed was breathing fast, I started getting worried.  One possible cause could be pneumonia or any other number of pfunny gnamed illknesses.

So, first thing the next day I called the doctor and scheduled an appointment for later that day.  The two things I can always count on with my obsessive-compulsive doctor is that no matter what I am there for I have to be humiliated with the scale, and that he will be at the very latest on time.  And that is exactly what happened, after finding out I was fat (again) I was taken back to see the doctor...early!  While the nurse was pointing out that I was fat and taking my blood pressure, she scared me by telling me how rampant pneumonia has been this year.  My doctor came in and had me take several deep breaths, much more than usual, which seemed like a pretty sadistic thing to do to someone that was having trouble breathing.  Finally, he told me to take a deep breath, and breathe it out as fast as I could, which resulted in my coughing very hard, getting light headed, and almost falling off the exam table.  That caused him to giggle a little and tell me that people usually get lightheaded if they come in in my state and do that, which made me wonder why, if most people get lightheaded and almost fall off the table, why didn't he put himself in some sort of position to catch me?  Anyway, he narrowed it down to walking pneumonia or viral bronchitis, and told me to go to the hospital right away to get an X-ray.

Because of my medical past, I have been pummeled by radiation so much to the point that my oncologist wants to limit the amount of exposure I have from now on.  For those that don't know, radiation builds in your body over time.  It starts from the day you were born and keeps adding up until the day you die.  I told my doctor that my oncologist (and his good friend) had ordered a chest X-ray as part of my six month post-chemo check-up for the next week and asked if there was anyway I could just get one set of X-rays that would take care of what both my doctor and my oncologist wanted to see (plus then I would only have to pay one co-pay).  He thought that was a great idea and wrote the prescription.  My doctor sent me on my way, but not without first giving me two free inhalers.  He is one of those doctors that feels if drug companies are constantly going to keep coming around and bugging him, he is going to take all the samples he can, and try his best to keep from actually ever writing a prescription for anything, just give away free samples.  I don't think that is what the drug reps had in mind, but I certainly appreciate it.

I rush to the hospital just in time to spend the next half an hour filling out paperwork and answering questions between coughs.  I finally got in to have my X-rays done and my doctor called the next morning to say I just had bronchitis (which isn't that much easier to spell) and that it looks like I am still cancer free.  I still have another week before I hear that officially from my oncologist, but the surprise X-ray and results have definitely cut down on my scanxiety this time around.

So, going on week four since all this started, I am still coughing and according to my doctor, can expect to still be coughing for another two weeks.  I am thrilled.  In the meantime, I will steer clear of salty foods, keep making people around me scared that I am contagious, and keep my wife and basenjis awake by hacking all through the night.  Let's just call it payback for all the kicking that they supposedly do "in their sleep".

I will close by telling the story about the Evil Casket.  The Evil Casket started chasing this poor girl one day.  No matter where she went the Evil Casket came bouncing after her.  The faster she ran, the faster the Evil Casket bounced.  She ran into her house and locked the door, the Evil Casket knocked the door down.  She ran upstairs, and the Evil Casket bounded right up the stairs behind her.  She ran into the bathroom and locked the door, and the Evil Casket broke that door down too.  Cornered and desperate, the poor girl reached for something, anything to use as a weapon against the Casket.  She opened the medicine cabinet, grabbed the Dimetapp, threw at her pursuer, and....the coffin stopped!

Ah, The Good Old Days When I Could Take Dimetapp...

After a week (or weak) of coughing, snorting, hacking, sniffling, wheezing, whining, blowing, gasping, and honking I think I have almost beaten this cold.  According to my wife I was just complaining and it wasn't that bad, until she caught it four days later.  I maintain, that if she would have taken better care of me, she wouldn't have gotten it.  However, since she just left me to flounder, I remained sick and infectious and she caught it from me.

I think the worst part of this cold or any cold, is when you start coughing without end.  Although a few blogs ago I was saying I finally felt like I was over my incision pain, I was coughing so bad a few days ago, I was afraid I was going to rip it back open again.  Luckily I didn't.

When the coughing started, I reached for my tried and tested Dimetapp Children's.  Not being able to take anything with any alcohol, this is my usual goto remedy for coughing and itchy throats.  However, I haven't taken any since I had chemo.  Tired from wiping, coughing, and spitting all day, I took the maximum dose of Dimetapp and laid down to enjoy a sound night of slumber.  Five hours later, I was still waiting for slumber, or at least for the monkeys in my head to quit typing.  OK, there were not any actual monkeys typing, but my mind was racing so much, it felt like there were approximately one thousand and two monkeys typing on old fashioned manual typewriters with worn out ribbons.  I don't know why it had to be worn out ribbons.  Maybe they weren't monkeys, they were gibbons and that is where I got the "ribbons" from.  Anyway, I couldn't concentrate on sleeping if that makes sense.

Ever since chemotherapy, anything with diphenhydramine (like Benadryl) instead of making me tired, makes me wide awake and has my mind racing.  I guess it's a good thing I've never done meth.  My mind would be racing and I would never get anything done from the diphenhydramine.  Meth addicts get a lot done right?  And diphenhydramine is one of the things they make meth with right?  Yup, it is, I just looked it up.  Now I am probably on some government list for looking it up.

Well, with the Dimetapp a failure, I was even sicker from not getting any sleep.  So, I slept all day and completely screwed up my sleep pattern, which helps in healing too.  Eventually, through the use of Lifesavers and Luden's I was able to make it through the sandpaper-against-the-back-of-the-throat days to now where I feel almost normal....for me.

The caveat is that now I have a coughing wife keeping me awake and a coughing basenji.  I know you are probably wondering why my dog is coughing, and frankly we are too.  My mother-in-law's theory is that she caught the cold from us.  Now while I don't think she caught our cold, I do think this basenji is hacking because of it.  Lately, she has had a smorgasbord of Kleenex's lying around.  Now before you say "Ooh, boogie eating dog!" I am not talking about used Kleenex's.  It's just that we have had boxes of Kleenex's within arm's reach of every flat/cushioned surface in the house, and that to Daisy the basenji is a lot like having a beer tap with mouth's reach of an alcoholic.  Because a Kleenex box works much like a beer tap, more just keeps magically appearing.

So, I don't think Daisy is coughing from a cold, I think she is coughing from eating several cases of Kleenex the past few days.  And although Kleenex may be a welcome relief on a runny nose, I can imagine it would tickle the back of your throat if you ate one, or a box.  At any rate, our vet didn't seem too worried, and just in case she gave us medicine to fix every possible thing it could be.  Which made me jealous.  I think next time I have a cough I will just go to the vet.  She's cheaper than our doctor too.

Anyway, with the weather warming up, I am hoping to be well enough to get out and enjoy it.  Hopefully my wife will feel better soon too (because unlike toughing it out like I did, she whines a lot).  Plus I am getting wore out from waiting on her hand and foot.