Paul's Heart

Life As A Dad, And A Survivor

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Helping Those Affected By Harvey/Irma/Maria

For those of us that remember Hurricane Katrina and how it destroyed areas of Louisiana with flooding and devastation, we all had hoped that our country would learn to be better prepared for these natural disasters, especially in response.  Sure, hurricanes are unpredictable, we can accept that.  But as we learned this summer, after our southern states and territories have been pounded by three major hurricanes, we were still not prepared for proper response after the Hurricane Harvey hit Texas, resources dramatically thinned as Irma crashed into Florida, and now, the US territory of Puerto Rico, residents are US citizens, are impacted by governmental red tape, as well as the impact of FEMA being inadequately staffed and insufficiently budgeted, the effects now show.

I will be honest, I do not know what the budget for FEMA actually amounts to, and if there is actually a budget for so many natural disasters a year.  But clearly, vacancies in FEMA that still exist, reductions in funding, are leaving our country unable to respond in the event of an unprecedented season of multiple national disasters.

I cannot speak for Houston.  It seems like news coverage is now focused on Puerto Rico.  I intentionally did not say “rightfully so,” because after seeing the devastating flooding, and living in the hurricane zone of Irma, southern Florida, I know we are still cleaning up and are told, cleanup could take another 4 to 6 months.  While we had some flooding, it was nothing compared to Houston.  But as the media is concentrated on Puerto Rico, they truly are on an “island in the middle of nowhere,” which makes it hard to get help and relief.  Until this morning, a shipping restriction, called the “Jones Act,” restricted any non-US ships from carrying cargo into the ports of Puerto Rico.  This was preventing the massive amounts of aid needed for those in Puerto Rico.  My own opinion, I am still baffled by some of the restrictive decisions made by FEMA restricting air traffic in and out of Puerto Rico to either evacuate US citizens, or deliver aid.

So, what can we as individuals do to help?  Well, as Pitbull, Mark Cuban, and other notables are demonstrating, they are making a difference with the resources they have.  Obviously, they can afford to send their own private planes and offer other assistance.  But you do not need a million dollars to help.

I am certain you must be aware of hurricane victims getting ice and water distributed to them after a disaster like we have gone through.  This picture is the contents of a box prepared by a contractor for FEMA, which basically will feed an individual for a day, three meals and snack.  Not too sure how good the container of milk is, but it is stated that it was prepared to be stored at room temperature.  But boxes like this, are handed out at distribution sights.

Following disasters like this, many concerned people look for ways to help.  We are always encouraged to donate to the Red Cross.  But the one drawback to me, someone who wants to make a difference now, following Katrina, there was a likelihood that anything donated for Katrina, would not go to Katrina victims, but most likely stored in a warehouse for the next disaster.  What difference should it make who it helps as long as we help, right?

Puerto Rico is in horrible shape.  They need help now.  There is no time to wait for the government to follow steps and procedures and other bureaucratic red tape.  I felt the same way when Katrina hit.  Which is what this food kit reminded me of.

Years ago, I ran a youth group, and yes, it was during the days of Hurricane Katrina.  And the kids wanted to help.  Together, we all created “shoe box kits,” which not only had some non-perishable foods and water, but also supplies such as toothbrush, toothpaste, toilet paper, even some small games like cards to distract or toys for children who might be scared.  More importantly, the kids all wrote a letter to go inside the box letting the recipient know that they were not being forgotten.  And it was hoped that the box would give them hope.

Instead of sending these boxes to the Red Cross, we sent them to a church outside of New Orleans, directly to a minister, and asked if they had any kind of drive to help the Katrina victims, to make sure that these disaster kits were given out.  And they were.  We actually heard back, not just from the minister, but some recipients as well.  I could never have been more proud of these kids for taking the initiative to help other more than a thousand miles away.

We were not as famous as Pitbull or Cuban, but all of our acts show that one person, or a group of people, can make a difference, especially when response by official organizations may be perceived to be either slow or ineffective.  You can make a difference.


Cancer And Employment

At one time, I used to be proud of the fact, that the only time that I missed from work, while being treated for Hodgkin’s Lymphoma, was for the actual treatments themselves.  Think about it.  I got eight months of toxic chemotherapy, and all I missed from work, was the last two hours of the Friday for my treatments, just twice a month, for 8 months.  I spent the entire weekend crashed and vomiting, but showed up for work the following Monday.  During 30 days of radiation therapy, I missed only the first hour of work to attend the treatment.

So it was only natural that once I finished my treatments, I would go full tilt back into my life.  Get back to normal.  Head back to the gym.  The only problem with that for me, is that I tried to pick up right where I left off more than a year and a half earlier.  Of course, injuries occurred.  My body had been put through hell for the last year and a half.  But hey, my only goal was to prove to myself, not only did I beat cancer, I did not let it take my work ethic and ability from me.

In 1993, the Hockey world was rocked when it discovered that one of the greats to play the game, had been diagnosed with Hodgkin’s Lymphoma.  Of course, by then, I had been in remission for three years.  But given his celebrity status, I was certain that he would be able to afford the best care, and would beat the cancer.  Mario Lemieux made it clear that he would only miss games due to his treatments and would return as soon as they had been done.

Two months later, Lemieux returned to the game, against the Philadelphia Flyers (my favorite team and rival).  Philly fans are not necessarily known for their class, but rather lack of it (having thrown snowballs at Santa Claus during an Eagles game).  Lemieux got a standing ovation for his return.  And the hockey world was put on notice as he scored a goal and an assist (Flyers got the win, however).

Nothing will drive a cancer patient harder, than the desire to get back to “normal.”  And “normal” is assumed to be what we once used to be able to do before cancer came into our lives.  Much like Lemieux, as soon as my treatments were done, I hit the gym hard, and I mean hard, full tilt.  No, I did not have the strength anymore that I once did, but I had to start losing the fifty plus pounds I gained on chemotherapy (yes, it is possible to actually gain weight on chemo… prednisone… that’ll do it).  Like Lemieux, I ignored the risks of injury because of my weakened body.  Like Lemieux, I got through my rehab phase without injury.

But as I mentioned, I also continued to work not just through my treatments, but of course continued even stronger with my work ethic after I completed treatment.

Chemo and radiation treatments also wear down the immune system.  So remaining at work, or returning too soon, can leave you susceptible to others who come to work ill with common maladies such as a cold, the flu, pink eye, strep, chicken pox and so on.

But the physical part of the decision to either continue to work or return to the work force is only one factor to consider.  There is the emotional, or mental part that needs to be considered.  Your emotional state of mind will also play a role in the physical world.  You will not only deal with your own emotions, but the emotions of your co-workers, and this can have a profound affect on you.  Because if you have anything less than a supportive co-worker, those frustrations will be taken out on you, and you have enough on your plate without having to deal with someone else.

The only person who truly knows, not understands, but knows what you are going through, is you.  Even myself, I have a very good idea what you may be experiencing, more so than just understanding, but only you truly know what you are going through.

My attitude has always been, “your body has been through Hell.  Give it the break it not only needs, but deserves.”

A Celebration For Stephanie

It is hard to believe with more than 300 drafts sitting in my cue, that I would have writer’s block.  So today, I got a huge shot in the arm when I was tagged to a post announcing a major milestone.

It is hard to believe that that time has flown by this quickly, but nearly three years ago, I published a post, about a special guest here on “Paul’s Heart,” titled “Stephanie’s Words”.  You can also find the post under the page of the same name on this site.  Stephanie has just hit her 5 year cancer free mark!!!!!

To put this in perspective, nearly all cancer patients have this number, 5, put into their heads, whether it be by the doctor, employer, insurance, or even a fellow cancer survivor.  Statistically, it is the measure of survivorship as the numbers indicate the rate of survivorship depending on the specific cancer the patient dealt with.

I looked back on the original story that was published (you may go back to the story to see the story, as it was written by Stephanie herself), and having remained friends with her, and her family in the years since, her life is nothing short of miraculous.  As a 27 year survivor myself, I usually draw my inspiration from those who have survived even more years than me, but if you read Stephanie’s story, you will understand and be inspired by Stephanie.

Stephanie not only had great support from family and friends during her fight with Hodgkin’s Lymphoma, but that same support network has been just as critical in her survivorship.  I think Stephanie would agree with me, as most other survivors, life after Hodgkin’s is more than just getting back to normal, or as we are often told, a “new” normal.  We have had to deal with fears of relapse.  There is also the initial “let down” once completing the treatments, which seems odd, but consider this fact.  For a year or two (or more), we no longer have control of our lives, because everything about our body is now dictated by schedules, appointments, and side effects.  And then the day comes, our lives are handed back to us.  And it can be overwhelming.

Just as I have over the years of my survivorship, also from Hodgkin’s (you can see on my “counter” I am heading towards 30 years!), Stephanie has met other survivors of Hodgkin’s as well.  And those that she has known, some have gone through similar struggle, some more difficult (if that is possible to imagine), and some, not so difficult.

Today, Stephanie marks 5 years, CANCER FREE!!!  And I am sure that I speak for Stephanie, in saying that she wishes nothing less than for everyone to not only reach this same milestone, but to go beyond.

And Stephanie, as I am often quoted, “as I continue down the road of remission, I will keep looking in my rear view mirror to make sure that you are still following me.”  I wish you the best.  You have a great life ahead of you, a wonderful fiancé who has been with you the entire time, and that speaks of inspiration itself for all caregivers.  I look forward to some exciting pictures in the future, and will be waiting for each anniversary as you soar towards number ten.

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