Paul's Heart

Life As A Dad, And A Survivor

Archive for the tag “cancer”

03 Feb 2013

Does Size Really Matter? – Deciding On A Health Facility


Memorial Sloan Kettering.  The Mayo Clinic.  MD Anderson.  University Of Pennsylvania.  The list goes on and on for the top hospitals when it comes to cancer treatments.  There is a different list of facilities when it comes to heart surgeries, pulmonary issues, and so on.  Many of our nations “best” hospitals are “teaching” hospitals, meaning that they are more likely to have the current diagnostic tools and treatments available.

I have taken quite a few moments to decide what hospitals to be taken too, of course ulitmately, I am at the hands of my wife to honor my wishes.  The closest hospital to us just also happens to be the last hospital in the world I would ever want to be taken to.  It has the worst reputation for cleanliness and sterility, in other words, you have a fairly good chance of going home with MRSA.  The longer you stay in that hospital, the better the chances of contracting MRSA.  So it is not necessarily a good thing if a hospital keeps you longer to recover from whatever took you there.  The reason that my wife insists on taking me there?  It is the only way that my daughters would be able to come and visit with me as transportation time alone would be an additional hour and a half.  On a school night forget it with having homework.  So, in that regard, I appreciate being local.  It is a smaller hospital, which recently had been bought out by a larger network, still not on the national level, but the buyout has been expected to improve the quality of the local facility.  I am just not sure that it has.

When I dealt with my Hodgkin’s Disease, I was not really aware of all of the “big” network and teaching hospitals available to me.  I did believe that if I were to go to any of them, besides the great distance, I was not sure that they could give me emotionally what I was going to need, that I would be treated just as a number.  Personally, I needed more than that.  The doctor that I chose worked out of a small network, but more importantly, as all cancer patients probably had the oppportunity for this, I knew a patient personally that he cured, my grandmother.  Granted, she was treated for breast cancer, but he saved her life, he could save mine.  The big risk I took by doing this, he was an older doctor, so there was a chance that I would be treated with older modes of treatment and not the most current available.  But I believed that if I had the confidence in him, I would have confidence in the medicine, and that would get me through.

At various points in my life, I would end up in the hospital and always felt comfortable with the hospital that I grew up near.  It has become quite the network and one of the best in the country.  So when I had some uncontrollable bleeding from an area that no man ever wants to see blood coming from, it was only natural that I went to that hospital.  When it was determined that it was not cancer or cardiac related (yes, blood in the urine can be attributed to a valve issue with the heart), but rather a kidney stone, how quickly that stone situation got resolved depended on where the roaming kidney stone unit was and what day.  Yes, hospitals in my area do not have their own “lithotripsy” machine.  The first time that it would be back at this hospital would be in approximately two weeks, however, it was going to be back in town the coming Tuesday at a hospital that I swore I would never set foot in ever again.  My grandmother had passed away in that hospital, and while it was not their fault as to the cause of death, I did have a problem with their methods of convincing people the importance of extending their terminal lives at the expense of their dignity.  As far as I was concerned, this hospital tortured my grandmother during her dying days.

But for anyone who has ever had a kidney stone, or gall stone for that matter, no one will deny the pain level to drive a six foot 300 pound giant of a human being into a fetal position in pure pain, than a 4mm stone.  I needed to have this resolved before the stone set to travel from my kidney.  I was going to have to have the lithotripsy (shock-waving the kidney stone into obliteration), at this hospital.

Now let me tell you about how small this hospital is.  I was the first scheduled appointment that Tuesday morning.  Now remember, this is a fully functioning hospital.  It also evidently has hours of operation.  So the security guard unlocks the door at 5:30am precisely, and I am already third in line.  I cannot see what is happening, but I do see a lot of head-shaking.  Just like that, I am called to the receptionist and begin my admission, or the process that the hospital will be using in place of that procedure.  You see, when I offered them my driver’s license and insurance card, they told me that their computers were not operating.  They did not state if it was expected to be a long drawn out process or not.  I stated that I had a 5:30 procedure scheduled so it was urgent that I be registered and they offered to make a photo copy of my indentification.  Fifteen seconds later the woman behind the desk came back and said that their copying machine was not functioning either.

Did I mention that I did not want to be in this hospital in the first place?  And so, without any identification, which I had to store in a locker while I was in for the lithotripsy, I was escorted into a room, where I would be anesthetized, with no identification, no hospital bracelet, nothing.  And so, the procedure went on, because I could not risk returning to the state of pain that the pea-sized stone had been causing me.  And to add insult to injury, they actually allowed me to sign myself out of the hospital later that morning, totally unattended.

I realize that the last example was an extreme case.  But it did happen.  And I went against my gut feeling in being treated at this hospital.  I got lucky compared to how this episode could have turned out.

My heart surgery, that was a totally different story.  I happened to be at that hospital in a connected doctor’s office.  I was already there, but I was already aware that the hospital had a good reputation.  But even that reputation is limited when it comes to long term cancer treatment effects.

When I found out, that I was not done with my cancer history, I had the major decision to make.  And it did not even come down to the biggest hospital or the hospital that made me feel all snuggly and warm.  I needed a network that had history, studied long term side effects.  My prior posts have gone into great detail on just how urgent my decisions can be.

As you can see, it all depends on the situation, do you go with the big network or the little hospital.  Does size really matter?  To some it does, to others, it’s what you do with what you know.

Posted in Cancer, Family and Friends, Inspired By..., Side Effects, The Heart and tagged , , , , , , , | Leave a comment
27 Jan 2013
2 Comments

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 , , , ,

Post Navigation

← Older Entries
Newer Entries →