Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Education”

Hodgkin’s Lymphoma Awareness Month


It has been a while since I have posted.  I enjoyed a wonderful Summer visit with my daughters.  They are back home with their mother, which can mean only one thing, return to school.  And return to school means one thing, September.

My posts over the past several months have been recognizing “30th anniversary” marks throughout my diagnosis of Hodgkin’s Lymphoma, treatments, eventually leading up to the 30th anniversary of the completion of my treatments, remaining cancer free for 30 years.

Having been diagnosed in November of 1988, that makes this September actually my “31st Hodgkin’s Lymphoma Awareness Month.”

Just as I counsel new cancer patients in learning to deal with remission, and combat fear of recurrence, I have literally taken things one day at a time.  That first year being the toughest, with even the slightest similarity of a symptom causing a panicked fear of a recurrence.  Before I knew it, I would hit five years, ten years, twenty-five years, and my thirty year mark is just seven months away.

It is really hard to comprehend the complexity and the paradox of Hodgkin’s Lymphoma.  It is considered a rare cancer, in number at least, especially compared to lung, breast, and colon cancers.  But it is known to have one of the highest cure rates at around 86%, up a few percentage points from 1988.

The frustrating thing for me, and other long term survivors, is that with a high cure rate as it has, a 100% cure has not been found.  And we hardly ever hear of many new methods to treat it, with the majority of funding always going to the bigger cancers.

What I will tell you is this, that Hodgkin’s patients of today, have a great chance of survival, especially when it is caught early.  And the treatments being used today are not near as toxic as what I and other long term survivors were exposed to, leaving us to deal with extreme late developing side effects.

Hodgkin’s Lymphoma is a blood cancer, so September is also recognized as Blood Cancer Month.  Other blood cancers include Leukemia and non-Hodgkin’s Lymphoma.

To all my Hodgkin’s friends and survivors, this is the month is our month.  Make people aware of Hodgkin’s Lymphoma.  More importantly, make people aware that it is treatable.

I would be remiss though, if I did not recognize so many of my fellow survivors who are not here with us today, having passed away from complications of survivorship, or the Lymphoma itself.  You are never forgotten.

A Test You Cannot Cheat On


It is a pretty safe bet that anyone reading my posts has had to have a blood test done at some point of their lives.  Whether it be for marriage, an employment physical, medical follow-up, whatever the reason.  Some blood tests, you have to “fast,” not eat or drink for a period of certain hours.  This is to give a “clean” number reading, not affected by nutrients or ingredients in food such as caffeine or sugar.

So, we do just that.  Knowing that we have a blood test coming up, that is meant to measure sugar, or cholesterol, or something else affected by our diet, I can at least admit that I go overboard in the starvation of my body of the foods I enjoy, just to have the possible lowest number on that test.  And it usually works.  And as I hide nothing in my posts, immediately following the blood test, I go for a nice lunch of the very things I denied myself.  At that point, with the blood test done, my cheesesteak and fries will not affect my results.

The truth is, we all have a tendency to “cheat” on certain blood tests.  And it was a matter of time, before a blood test was created to prevent misleading numbers that do not reflect accurately the test being measured.

As I have been followed up for a long time with all the late side health effects I deal with, I get blood work done annually.  I get the usual things checked, like cholesterol, and of course sugar.  For as long as I can remember, I have had a test done called an “A1C” though never really paid attention to it.  I just watched the “sugar” and “triglycerides” because these were the things I always heard discussed.  Knowing that these were impacted by drinking sodas, eating candy bars, ice cream… you know… all the good stuff, I made sure to go easy on those things when I had these tests done.  But this A1C was always in the background, hovering around 5.7 to 5.9.  I had no idea what that meant until two years ago, when I was warned that with numbers like that, I was “pre-diabetic.”

Well, to me that just mean I was not diabetic, so really all I needed to do was just reduce my intake a little bit and I should be fine.

Last year, during my summer time with my daughters, I was unable to use my barbecue grille for a period of time.  I tried to use my oven to broil things, but it was just not the same.  And it would be too expensive to eat out every night.  So, while I waited for the grille to get repaired, we ate pasta.  A LOT OF PASTA.  Which of course most know, pasta is carbs, which turn to sugar.  It was two weeks before the grille was fixed.  At the end of the summer, I finally got around to my blood test (mainly because of my fear of needles I always drag the test as far as I can).

8.9

The A1C test measures your average blood sugar levels for the last 60-90 days, in particular, how much of your hemoglobin is covered in sugar.  That is right, unless you have been “cheating” for the last 60-90 days, the A1C is going to be the determining factor of being or pre-disposition to, diabetes.  As stated above the picture, my number was 8.9.

Of course, as soon as my doctor informed me that I was now being diagnosed with diabetes, out came the excuses… the grille, my daughters visiting…  The test measures 60-90 days average.  My daughters were with me for 49 days.  Fortunately I was not at the point where I need insulin (which I would never be able to afford), but my local grocery store sells a very affordable 90 days supply of the medicine I was prescribed to force my A1C down to a safe level, and get back to being “non-diabetic.”

I have other factors that play into a possible diabetic diagnosis, but the sugar was a definite.  But after a year on the medicine, my A1C is back down to “pre-diabetes” level, my weight is down.  Stress also plays a major role affecting the A1C as well.  And as a long term survivor of Hodgkin’s Lymphoma, exposed to an extreme amount of radiation for treatment therapy thirty years ago, radiation can impact the pancreas which can affect the production of insulin.  Great, just what I needed, yet another health issue from surviving my cancer.

Some of my fellow survivors are in the same situation as me.  There are those that had huge spikes in their A1C once they stopped taking their medicine, having to return to taking the medicine, or worse, taking insulin.  Since many of us have heart issues because of our treatments, we really do not need the complications of diabetes added to our lists.

A recent study by Springer states that there is a 16% increase in childhood cancer survivors who received radiation of 10Gy (units of radiation) to the pancreas.  To put that into perspective, myself, and many of my fellow survivors decades ago received nearly 4000Gy.

If you are currently a normally healthy person, just keep doing what you are doing, but keep an eye on your health.  Follow up annually.  Get your blood levels checked.  For me, and others, it is just another thing we have to add to our list.  Once diagnosed with diabetes, and I know many who are, the complications only get worse.  If you are lucky to be able to prevent diabetes, do it.

Happier Times Remembered In Hong Kong


Being an adoptive parent of an international child, I have an understanding as well as at least some experience understanding the culture of the country where my daughters come from.  During my first trip to China, I learned first hand, the many misconceptions that I had about the country, and learned some new things as well.

Knowing that I would be travelling out of the country, I notified the bank of the credit card that I would be using for the trip, that purchases would indeed be showing up, in person, outside of the US, during a certain time period.  At that point, I thought I had taken care of everything.  I was ready to go.

To match my enthusiasm, I received good news from the adoption agency, that the trip was being moved up three days earlier.  I definitely had no problem becoming a Dad officially sooner.

We landed at the Hong Kong airport and were met by our guide for this brief leg of the trip before heading to mainland China.  We made our way to the hotel at the airport to get as good a night sleep as we could.  More good news.  Instead of meeting our children two days later, we were going to fly into mainland China, check in to the hotel, and then proceed right away to meet our children.  It is impossible to describe the excitement.

I got to enjoy that excitement approximately ten minutes.  As it was my turn to check in to the hotel, and handed over my credit card to secure my room, the attendant behind the counter responded, “card declined.”  Not sure what I had heard, I just automatically told him to “try it again.”  His response was the same.  Panicked, because I had taken care of everything to make sure the card worked before I left, I demanded “try again.”  The third time was not the charm, as it was declined again.  Long story short, eventually after 3 stressful days, the confusion would be straightened out, but for the purposes of this post, that is a different story.

It was at that time that I learned about Hong Kong, a former property of Brittain, that although Hong Kong is considered a “free” country, it is also part of China.  The expression goes, “one country, two systems.”  Obviously, the one system being a democratic free society even with its own currency, the other Communist.  Yes, people, Communism still exists though today the word “dictatorship” is more commonly used.  Either way, Hong Kong is considered part of China.

What I had cleared with my credit card company, was that I would be travelling to China on a certain date.  But remember, I traveled three days earlier than I was scheduled, and unknowing to the fact, that Hong Kong would be considered separate from China.  Two different facts than I had presented to my credit card bank.  And it made a difference as the bank killed my credit card after trying to check into the hotel.

That is why, when I overheard the news about protests at the Hong Kong airport, and many countries issuing warnings about travel to Hong Kong, I wanted to find out more what was happening.  And though Hong Kong is on the other side of the world, the events occurring right now should be of concern to Americans.  Because the people of Hong Kong are fighting for one thing and one thing only, their freedom.

For the most part, protesters have been peaceful, just numerous in size and gathering.  Admittedly, there have been reports of some clashing between authorities, and at least five deaths recorded (all suicides).

As I said, Hong Kong, while part of Communist China, is considered a “free country”.  The issue at hand, is that China wants to issue an extradition policy that would result in offenders in Hong Kong, being extradited to mainland China to face their charges.  Again, China is Communist, and their courts and punishments are often at the center of human right violations.  And this is what the people of Hong Kong are fighting to prevent.

I am sure that there have been other issues between Hong Kong and China, but this is one that is grabbing international headlines.  Given China’s size and power, it is likely that the policy will be instituted, which will only be another chip away at the democracy that the people of Hong Kong have been enjoying for so long.

I have so many happy memories of Hong Kong.  And having been through the airport, I have a crystal clear image of the chaos and crowds now filling the airport.  The islands of Hong Kong, yes, they are islands, are beautiful with the architecturally unique skyscrapers, peaceful temples and statues, all the while an excitement of many other big cities.

I hope that this current crisis in Hong Kong gets resolved, and resolved as peacefully as possible.  But as the people of Hong Kong will tell you, freedom is worth fighting for.

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