Paul's Heart

Life As A Dad, And A Survivor

Archive for the tag “cancer”

27 Jan 2013
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Time Travel – Changing History


H.G. Wells did it.  Sam Beckett did it.  Bill and Ted did it.  Superman had to do it for Lois.  Even Bart Simpson has done it.  Time travel.  All had the desire to go back into time to either research or alter time.  Each had their own mode for making the journey – an actual time travel machine, Ziggy the computer, a phone booth, a cape, and as a parody of “Back To The Future,” a DeLorean complete with Christopher Lloyd.

The concept is simple.  Go back in time.  Fix what needs to be corrected.  Come back to the future.  Of all the time travelling media, Sam Beckett in Quantum Leap was my favorite.  You see, when you change the past, you change the present and the future.  Beckett had to be careful so that he only changed the history of the person he was sent to help.  And there were times when it was extremely personal for him, like saving his wife, or even stopping this project which he found out eventually was much bigger than the invention that he created.

There is a different way to change history though, without going back through time.  We do it as children, and we often live through it as adults.  We study history.  The idea of studying history in one aspect, is to not repeat it.  Wars.  Space Shuttle disasters.  Tough economical times.  Medical crisis.  We study the examples so that we learn from them, and do not repeat them.

When we are born, our path is set.  There is a natural progression to aging, infancy to toddler, toddler through child, child into puberty, then to adulthood, and senior status.  And there are things that we know, are likely to happen to our bodies as we get older and our bodies get tired.  But just as travelling back into history to “fix” something, for me personally, the cancer diagnosis being the time traveller, forever changed my present and future.  There are bad things that came of it, but there are also good things that came of it.

For example, when I went through the radiation treatments, there were some things that were known that could happen as a result (called a side effect), but there was so much that was unknown.  Of course I knew what could happen.  Mr. McGee could make me very angry and I would go through my wardrobe very quickly not to mention look like I belonged on a can of vegetables (Incredible Hulk reference for those that need it).  Well, I did get a lot of radiation, too much in fact.  At the time, it was what worked, that is all researchers knew.  In today’s treatments, doctors know that they can use much less and by that, I mean ALOT less and have just the same effect or better.

So as I said, I received too much radiation, amounting to four times the lifetime allowance of exposure.  There are many who work at nuclear power plants that are not exposed to what myself and others were exposed to.  The sad thing, I know plenty more people who were treated with much more radiation and different types, like Cobalt.  We have all been told as children that radiation is bad – “don’t stand too close to the TV”, “don’t stand in front of the microwave”, “cell phones cause brain cancer.”  Not only does it treat cancer, and cure cancer, but it can cause cancer.  That is why if you are smart and able, you put sunscreen on your body.

Well, just like on the outside, when you get sunburned, with radiation treatments like I received, the burns were on the inside as well.  To my knowledge, it is something that I will always have.  So the radiation and chemotherapy start doing damage to my body, inside and out, which gradually gets worse over the years.  To understand, if you drive a car that has one tire that is not inflated properly, do you think that will affect the other tires?  The overall performance of the car?

As it is, that I believe about my body.  With the first lymph node that was removed and biopsied, so my body had to adjust.  With the staging laparotomy, my spleen was removed leaving my body challenged forever against infections and contagions.  When my heart bypass surgery was complete, blood was flowing at the rate once done before, my body parts not used to.  The list goes on.  My body’s natural physiology was changed back in 1988.  As far as I am concerned, everything that is happening to me today, is because of the things that happened from that time on.  And so far, this has been confirmed.

So given the chance, would I go back in time?  Knowing what I know now, would I take the opportunity to change my mind to any of the procedures, or even to allow the doctors to treat me?  Given the two choices that I had, death or most likely cure, how would today be different for me today? 

Hodgkin’s Disease has been one of the more curable forms of cancer for decades.  Treatments have gotten better, safer.  But would I have had that much time to wait decades for a cure that would not have had the impact on my health today?    I have two very very good reasons to not even entertain that option. 

Mad and Em 12813

All I can do now, is make sure that any more decisions do not give me cause to want to go back in time to correct a regret.  Then again, what if I already had gone back in time?  What if…

Posted in Adoption, Bullying, Cancer, Education, Family and Friends, Side Effects, The Heart and tagged , , , , , , , , , ,
24 Jan 2013
5 Comments

No Chocolate Chips In The Cookie Dough


I will apologize for the misleading title.  But I use it to be the most polite way for me to discuss infertility.  Up until recent years, being unable to have children was the hardest thing for me to deal with as a result of the one chemotherapy drug I had been given, Mustragen.

As soon as it had been determined that I would have to go through chemo and Mustragen would be one of the drugs in the chemo cocktail, my oncologist tried, emphasis on tried (really a feeble attempt) to convince me to store sperm for the future.  His warning (again, feeble attempt) was to get it done as soon as possible because time was important to start treatments.  Preliminary testing told me that virity was pretty much non-existent and would not be worth the expense.  At age 22, who was I to argue.  I was not thinking about kids while I am still trying to accept that I have cancer.  But my wife did convince me that it was worth it.

I found a facility in East Orange, New Jersey.  All I had to do was send them my deposit, sounds simple enough.  Except that even pre-9/11 UPS was still suspicious about packages and refused to take my shipment without knowing what the contents were.  Okay, total blank on how to tell a strange man that he was picking up my sperm, ejaculate, baby batter, manjam, spunk, seed, oh I could keep going.  But no, I said they were “hopefully chocolate chips” from my cookie dough.  I almost had him believing me, until he saw the biohazard symbol on the package.  And with that, “I” was off to the cryotank.  Or so I thought.  Testing prior to the freezing led to the company opting not to freeze my donation.  Any future heir would depend on fate, luck, and survival, getting through eight months of a drug not confirmed to cause infertility.

I waited approximately two years from the end of treatments to approach my wife about trying to finally start a family.  I was convinced that any toxins either from the chemo or radiation were gone.  We tried for a few months with no success, so I made the call to my doctor who ordered a sperm count.  Trying to get the deed done at home, and with my wife’s assistance was difficult (unlike any other time when I was much too eager), but to do it right there at the lab, I only had so much time for lunch that day.

The results came back as I was afraid, zero.  I had no sperm at all.  There were no chocolate chips in the cookie dough.  Any chance of a blood heir were gone.  Next to having lost my hair, not being able to have my kids was worse.  It would end up being another year before I brought up alternative ideas with my wife.  Divorce would eventually take care of that issue completely.

But a few years later, married once again, my new wife knew my history.  Any fertility checks would be for her benefit.  We would seek out a donor from a company in Virginia.  But the first testing was going to be on me.  I pointed out to the specialist that “I had no chocolate chips in my cookie dough” and after he got done laughing at me, began to ask questions  that made no sense to me.  It was simple.  I could not have kids.

According to him it was not that simple.  He wanted to check for sperm of course, but also a blood test which would determine if my body was making the right hormones.  Because if my body was not, then that officially would be the end of it.  However, if my body did make the hormones, then it had to be about a blockage.  With the hormones, my body would be making the sperm.  Surgically, something could be corrected.  As usual though, nothing.

But it was amazing to think the possibility might have existed, I would have jumpt at it.  But we did pursue artificial means.  Unfortunately, results were not positive, which then put us in the situation of “we only have so much mony left – we can’t do both, onr or the other.

So, we adopted two girls from China.  Both came from different areas within the province and around two hours apart.  The process of adopting was amazing and will be covered in another post.

Posted in Adoption, Cancer, Family and Friends and tagged , , , ,
22 Jan 2013

Reality TV Bites! My Pitch To The Major Networks


Shows based on reality.  Oh, the humanity!
“You’re gonna lose your mind watchin’ TV” Oh, and “Fear Factor” I watched maybe a half hour after that, felt like I needed a long shower
Network execs with naked ambitions, “Next week on FOX, watch lions eat Christians”.  Leech-covered grub-eatin’ fools on “Survivor”
I love shows with or without a plot I’ll stare ’til my legs are numb, my eyes bloodshot
Because I only have got One brain to rot
I’m gonna spend my life watching television a lot

These lyrics are from Wierd Al Yankovic’s song parody “Couch Potato”.  I have intentionally only copied the references to reality television.  You can read the complete lyrics on any web page.  Late last year I attended a cancer survivor event.  One of the speakers was a head honcho at Memorial Sloan Kettering Cancer Center.  When he finally began speaking he mentioned the uncomfortable feeling he got referring to former cancer patients as “survivors”.  Survivor is often a term we associate with war, accidents, natural disasters.  I am paraphrasing, but that is the gist of what he said.  I believe he was attributing it to the duration of the event and the effects following it.  I would go one step further as far as using the word survivor, not just for cancer patients, but those who have survived war, disasters, and other tragic events.  I believe the word “survivor” has been cheapened by “reality TV”.

I will admit that I do watch an occasional reality show, but it is very rare.  The whole concept of someone volunteering to be put in precarious positions, be paid for it, and referring to the victor as a survivor is insulting and demeaning to those who have had no choice, who are not given a financial opportunity to recover (or in the TV world, profit from their effort or gain their fifteen minutes of fame).

Seriously, take a look around your waiting room.  In walks your doctor with a TV producer, and about a dozen people whom you do not recognize.  Since you do not know any of the visitors it is up to the doctor to introduce to you, what is about to happen.

“I have been approached by this major network about a new reality show about getting through a battle with cancer.  These people have all volunteered to be given the same cancer, and the same treatments.  There will be challenges where they will be given the opportunity for extra treatments, or denied treatments.  Competitions will determine what order people would receive their treatments.  Losing challenges would also carry consequences.  Every week, one contestant will be sent home by vote from the real patients who are not here for the TV show, where they will then have to find their own treatment plan.  The last one standing, or surviving, will be the winner of a million dollars.  As participants as observers, we will make sure that you get a year’s supply of TV guides to make sure you know just when the show is airing.  Sound good?”

Of course this scenario is prerposterous, and offensive.  But many times, when I watch shows like Survivor, Big Brother, Fear Factor, and now all these sub-class shows like Redneck Vacations and a show mocking an overweight child because her parents are too stupid to realize the damage they are causing, I do not want to be held in the same descriptive sense of the word survivor.  I have been through too much for my journey to be so understated just because it did not appear on some remote island.  My psychological battles are far worse than a group of spoiled egotistical jerks who believe the only way to get by is by being deceiptful, and disloyal.

We cancer patients are kind of funny with the labels that healthy people, and sometimes other cancer patients like to place on us.  Survivor.  Warrior.  And I am not going to rip on people who watch the reality shows.  But just once, I would like to see a major network produce a series and stick with it, about true survivors, not volunteers, we were forced into our situations.  We were not made into millionaires because of it, but there are literally millions of us, over twelve million.  Many of us have additional issues, and most do not know why.  Stand Up 2 Cancer is doing great by drawing attention to supporting research to find new cures and support, but we need something to show that people do live long lives in spite of their greatest challenge in life.  A walk around a track at your local Relay For Life is lined with luminairies with the names of people who have faced cancer and beaten it.  I would like to see a Nationally televised Relay For Life with at least half of the program dedicated to survivors and perhaps expanding the Stand Up 2 Cancer to include the various issues that survivors face after treatments from psychological to medical.  Just once, I would like to see a real reality show that is not based on backstabbing, lying, and degrading.  I would like to see true success and show people how success is really celebrated and appreciated.

Posted in Adoption, Animals, Bullying, Cancer, Education, Family and Friends, Food, Recreation, Side Effects, The Heart and tagged , , , , | Leave a comment

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