Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “November, 2014”

Too Big To Fail = Too Big To Care


Geezer alert!  I am going to show my age by being able to recall days gone by, when local mattered.  And times were good.  I do not normally do stories like this, but an incident this morning kind of struck me just how far things have gone.  And honestly, I do not know if it has been worth it.  I will let that up to you.

I was helping a friend with their stove this morning.  I used to do that kind of work years ago, and this particular task was easy, and not very physical to do.  So I made the call to the local supplier to see if they had the part, which they did.

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Simple enough, “how much?”  “A little bit over $50 and we have it in stock.”

My next question threw him for a loop.

“Do you have any aftermarket replacements?”  I asked this because at one point, the aftermarket company “Chromalox” actually used to make the element for the name brands.  Yes, you then paid the much higher price just to have the name brand logo on the part.  Years ago, being able to buy “generic” from local parts places saved you considerable money.  But if you went to an “authorized” wholesaler, per the manufacturer, they were not allowed to sell the generic equivalent.  The truth is, at one time, if you needed a belt for your washer, a lint screen for your dryer, a door gasket for your refrigerator, or an element for your stove, generics were always available.

“No, we only carry OEM (original equipment manufacturer) parts.”  So of course I looked around to find someone who was not authorized to sell those parts thinking surely, I would be able to get the original part with the original manufacturer’s name, Chromalox, not the manufacturer of the stove.  It was then that I found out that the manufacturer had bought out the generic replacement line I was looking for.  And yes, now my friend must pay the higher price.  But as I reflect on the past, for decades we have seen that mergers, though originally sold to us as “good for the consumer because it would increase competition which of course would bring lower costs,” I now call bull officially.

Here are some other examples:

telephone

Do you remember when nearly every town had their own telephone company?  Do you remember the customer service we had when there were issues with the lines?  Sure, the costs we thought were high, but look at the times now with just a couple of major players?  Customer service now means talking to someone outside of the US if you are lucky, and with all the hidden extra fees, we are now paying WAAAAYYY more than the days when it was just “Ma Bell”.

money

Banks?  I do not even have to go there because we all know that all the mergers produced one of the biggest collapses in our economy.

cable

Cable TV?  We are on the verge of a monopoly with this one, and our rates have never been higher.  Sure, their defense is “look at everything we are now offering your though… 1000’s of channels of programming.”  I only want four or five of those channels.  And if you try to break down your “package” by eliminating the services, amazingly, it will only drop your $150+ bill by five or ten dollars.  Come on, cable, phone, and internet for $150?  But if I want to drop the phone line, my bill will still be $145?  And anyone who has tried calling “customer service” for at least one of the major providers knows that company only provides “disservice.”

pharmacy

Big Pharm… wow.  The motto used to be “everyone needs prescription drugs” which of course should have translated to job security.  But as mergers occurred, jobs were eliminated.  And as drugs came off patents, generics soon crept in making the medications affordable.  But then Big Pharm started gobbling up generic manufacturers, and now look at today.  The costs of generics are beginning to climb to where many patients are in the same situation as trying to afford the original drug… they cannot!

medical

And here in Florida, as in many other states, doctors are being swallowed up by “health networks”.  This is resulting in the elimination of the general practitioner.  The numbers of general practitioners in the state of Florida are down nearly 50% as their practices are swallowed up by these networks.  Gone will be the times that you could see a doctor, for your life, who knew you, and cared for you.  You will now become just a number, and will get a “standard” level of care set by the network, not necessarily what you need, and perhaps might not need.

Of course, there is the big target, Wal-Mart.  How many local businesses have been put out of business by this company?

Too big to fail?  Too big to care.

Deadbeat Dad Defined


The term “deadbeat dad” is an ugly term.  We all know what it is meant to do, infuriate and create judgment against someone  most of us do not even know.  It is gender specific, though clearly, but not often, the term “deadbeat mom” also does exist.  But for the most part, you never hear it used.  Wikipedia defines the term “deadbeat dad” “commonly used to refer to men and women who have fathered or mothered a child intentionally fail to pay child support ordered by a family law court or statutory agency.”  The operative word here is “intentionally.”

I will admit that I knew the term “deadbeat dad” before I even became a parent.  And I will also admit, the anger I would feel knowing that a father was not taking care of his children.  For me it was simple, he was not paying, and that was it, he was a “deadbeat dad.”  No excuses.

The penalties for not paying child support and spousal support today are quite serious.  Just as when I was a child, my father had spent time in jail for failing to pay child support.  Again, I want to state as I have in the past, I do not know any of the specifics of my parent’s divorce to this date, nor do I want to.  He did not pay support always, and for that, he went to jail.  However, this kind of action back then did not carry the ramifications as it does today.  Also, the reasons behind a father or mother not being able to pay their support orders are not so simple either.  With computers and social media, an arrest record for either parent due to support issues is a death sentence for either parent to be able to provide any kind of income not only for themselves, but for the children.

Again, this is where the operative word “intentionally” comes in.  “Intentionally” would have to be, a parent protesting the support award amount and refusing to pay the amount, eliminating the income on purpose (can’t give what you don’t have), or simply not paying it.  These are intentional acts.  And I agree, whether father or mother, they should be dealt with.

Without going into the details of my divorce, I can easily just sum it up, that it will clearly be one of the most bitter, angry, hateful divorces for the books.  We both played a major role in the cause, though clearly she blames me, simply because I filed for the divorce.  I “quit” at she put it.  The outside interference in our divorce has only enflamed the process and the emotions.  I frequently receive hateful voicemails, emails, texts, and also replies to “Paul’s Heart” harassing and threatening me.  All under the guise of “free speech” as my estranged wife puts it.

Below are some of the things that have been sent to me:

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These were all posts on my Facebook page, as a “message” to me as I have struggled to pay the support award that was ordered.  Look at the last sentence, “struggled to pay”.  I have been trying to pay the award which due to circumstances beyond my control, have made it difficult, but clearly not “intentional” as someone from my ex-wife’s side is trying to incite.

The unfortunate results of not being able to pay child support orders, for those of us who try to, end up catastrophic, and will ultimately end up hurting the very children the support, as well as the father, is trying to provide.  But when you have outside sources, combined with a former spouse who has only revenge on her mind, though the divorce was the fault of both, bottom line it will be the children who suffer the most.

As I said, I am in this unfortunate situation right now.  The way the process has worked thus far, we presented our cases to a mediator, the judgment was set, and of course an appeal was made knowing I could not afford the amount that was set.  But in the meantime, I was expected to pay the full amount, unfortunately unable to meet that requirement, by no means was it intentional.  Corporate downsizing led to the elimination of the hours I worked, which led to the reduction of my salary – NOT MY FAULT.  Eventually the downsizing continued leading to the elimination of my position in my department – NOT MY FAULT.  I have health restrictions that allowed me to do that job for many years in spite of my many and well-documented severe health issues stemming from my cancer survival – NOT MY FAULT.  With the company no longer able to accommodate all of the restrictions I had, leaving work on disability was my only option, though clearly, it would not be enough money to afford the support award which would have absorbed 80% of my net disability income.  I had to find another job, that would be able to meet my health restrictions, while paying me the amount of money needed for the support award, and for my survival.  The only way I could do this was to separate from the company I had worked for, for seventeen years – NOT MY FAULT.

And so, I have spent the last several months, trying to find employment that would afford the current support award, as well as my living expenses.  I presented evidence to show, that I have completed more than 100 legitimate job applications, all which qualified monetarily, and I met the experience requirements, but unfortunately, have not even received more than even a handful of interviews.  Without a shadow of a doubt, I have proven I am trying to meet the demands.  I am not “intentionally” avoiding the child support order.

However, all the while, waiting for the appeal process to take its course, actions against me have indeed been taken, whether you judge me as an “intentional dead beat dad”, or a dad who is trying as hard as he can.  Bank accounts have been frozen, passport seized, notifications from the IRS and the state department of revenue have all been levied against me to force me to pay what I cannot afford currently, though trying to correct.  But the next level of this process becomes very serious as I mentioned earlier, if done for spite, will accomplish what my ex wife wants to do, but it will come at an extreme high price to our children.

As I said, I am trying to find work, but the next threat made legally against me, is to suspend my driver’s license, something normally done for someone with traffic issues or DUI’s.  But the intent is to make me take the award seriously, which I have acknowledged several times that I do.  But face it, with a suspended license, how can I get a job, let alone drive to work?  And with no work, there would be no income.  How does this resolve anything with someone trying to make good on the situation?  Fortunately, I have convinced the enforcement office to delay this action.

But it is going to be the ultimate penalty that I face currently, that will have the biggest, and permanent impact.  As the pictures show above, jail is meant to be the ultimate deterrent in forcing payment of support.  Again, if it is a “true” “deadbeat dad” who is intentionally not paying the support award, this should be expected.  But to the parent who is honestly trying, through no fault of his or her own, and is still trying, to arrest and imprison this parent would not only be unfair, but make it impossible ever, EVER to be able to find a job that would afford that support award.

The consequences go even further, because while imprisoned, there obviously would be no money coming in at all towards the support.  More importantly, the health insurance that I have kept going, would also stop, leaving my ex and my children uninsured.  And then of course, with an arrest record, it would be impossible for me to find a job any time soon following my release.  The only success for my ex wife, is that she succeeds in destroying me.

But for both of us, the price will be much more huge than that.  It is bad enough for our daughters to have two parents who can no longer talk to each other.  But now they will have a mother who forced the system to throw their father in jail.  And of course, I would no longer have rights to see my children for the next ten years until they reached adulthood.  I am already being denied any “extra” opportunities to see the children when I travel back to their state for hearings, just because she does not want to allow it.  Memories for all of us will never happen, all for vengeance.  And she is okay with that.  She has made it clear that everything that is happening is my fault.  No.  We both caused the divorce, I was only the one to file for the divorce first.

I have approximately 37 days now, before I face the serious prospect of being jailed on my birthday, which is also in time for the Christmas holidays when I am also due to see my daughters, to meet the current demands of the court.  I continue to apply for jobs, that will meet my health restrictions and afford me a similar salary and needed benefits.  But time is running out.

My actions are not “intentional”.  I am not a “deadbeat dad” as my ex wife and those around her are encouraging her to have me treated as such.

 

Jeff’s Take


 

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I first met Jeff Iredell a little over a year ago.  A fellow lymphoma survivor, though he had non-Hodgkin’s and I had Hodgkin’s, lymphoma is lymphoma as far as we are concerned.  He was holding a special recognition that evening, and a local golf course was honoring those who had battled lymphoma by lighting up their property in green, the “recognized” symbolic color for lymphoma.

To me, Jeff is a perfect example of someone whose life was so impacted by his illness, that he wanted to make a difference in the fight for others.  As he will explain in his story, he works with the Lymphoma Research Foundation, something that as a fellow survivor, I appreciate all help we can get with a cancer that gets very little recognition or support for a cure.  I have enjoyed watching Jeff recover from his lymphoma over the years when I first discovered him on a Lymphoma Facebook page.

I asked Jeff to tell his story on “Paul’s Heart.

Jeff’s Take

“It was just after Labor Day in 2011, September 9th to be exact.  I had been divorced for about 2 ½ years at that point and just starting to get out of my funk and get back to living life.  I hadn’t realized how co-dependant I had become and was pretty unhappy with life. Then the moment that would change my life forever happened.

Long story short, I had developed a blood clot in my lung, the CT scan also showed an enlarged spleen and enlarged lymph nodes. The doctors ordered a biopsy, PET/CT, etc. and then the cancer bomb hit. The doctor performing the CVIR biopsy said, “Usually when I go in to get this, it’s a form of lymphoma”.  Like many others, unless you have had it or know someone with it, you probably didn’t know what that is or that it’s even a form of cancer.  So of course I drove myself crazy once I got back to my room looking up everything I could find. My first piece of advice-avoid random sources, stick with a renowned sources, there is a mountain of misinformation out there.

When the oncologist sat me down to tell me the type, treatment options, statistics, all of it, I took it all in like sponge. I was diagnosed with Stage 4b Diffuse Large B-Cell non-Hodgkin Lymphoma (DLBC-NHL). DLBC is the most common form of NHL in adults and I was on the lower end of the age scale for this particular form.   Lymphoma is a blood cancer that causes abnormally fast growth in the lymphocytes (white blood cells) and typically appears in lymph nodes, bone marrow, the spleen and sometimes other organs. My particular staging indicated I had tumors both above and below the diaphragm and at least two other body systems, in my case, my bone marrow and spleen. I also had tumors on the humerus on my left arm and on one of my vertebrae.

I remember this moment, the day my attitude on life change for good, as if it was yesterday.  He asked, “Are you okay?  It’s a lot of stuff I just threw at you, I know it seems overwhelming, but….” I stopped him in his tracks and replied, “I’m great, forget how we got here, what are we gonna do to kick it’s ass in time for golf season?” He chuckled, shook his head and away we went I never had that “woe is me” moment and reflecting back, that was soooooo not the old me.

Treatment called for 8 rounds of R-CHOP chemotherapy (one every 3 weeks) and 4 rounds intrathecal chemotherapy. Intrathecal is simply a spinal tap where the fluid that is removed is replaced with a small dose of chemo. Traditional chemo cannot pass through what is called the ‘blood-brain barrier’. It’s our body’s natural defense to keep bad things out of the cranial and spinal fluid. Mine was done as a precaution with the tumor on my spine.

Forget what you have seen in movies regarding chemo. Long gone are the days of sitting on a bathroom floor and being sick with nausea all day. The anti-nausea meds have come a long way as have the treatments themselves in being less toxic. I got ill exactly one time and that was on my way home from the pharmacy picking up those same meds because I forgot to refill earlier. That doesn’t mean there aren’t side effects. The fatigue is extreme. I did find that walking on a treadmill for just 30-45 minutes a day did help with that. Then there was the constipation/diarrhea conundrum, you were never sure which was going to rule this treatment cycle. The worst was the Prednisone. You may have taken for allergies or skin irritations, but I was taking 6 times that amount daily for 5 days each cycle. It has healing properties, but is mostly in the mix to help appetite and keep energy levels up. The mood swings, sleeplessness, hot flashes, it was the worst.

All that being said, I weathered the storm pretty darn well. I think much of it was because of positive attitude and really getting involved in the lymphoma community. It was in November of 2011, I connected with another remarkable lymphoma warrior, Megan.  We “met” on our lymphoma support board on Facebook.   We only live 30 minutes from each other and despite having different forms and being separated by 20 years of age, we became quick friends.   We discussed everything regarding our treatments, the gross details we all want to discuss with someone, but may not have that person around to understand what we are going through. This was the beginning of me networking with other lymphoma warriors. They became my new family or as I now refer to them, “lymphamily”.  I came to know many of them better than some of my closest friends despite never meeting them in person.

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I realized that for the first time in many, many years, despite battling lymphoma, I was happy.  I had a whole new group of friends, ones who didn’t care what you looked like, what you could do for them, what your job was, any of the usual drama.  All we cared about was trying to help each other cope, lend support, and get each other back to being healthy again. The support I try to give on a daily basis is fulfilling beyond reason. Then there are some big moments that I receive far more than I give, although my counterparts may argue the same in their favor.

On July 1st, 2012, Megan and I finally met in person at our Lymphomathon team fund raiser. Certainly this was a moment of joy as we had both just finished treatment 2 months earlier. The next day Megan found out she already had a recurrence of her Hodgkin’.  She still had a long battle still ahead, yet by the end of the day we had filmed a spot for her now famous video and went to dinner. Despite the news earlier in the day, at that moment in time, we were happy. In September, one year after my diagnosis, we walked together at Lymphomathon (A 5K walk in support of the Lymphoma Research Foundation or LRF), in lock step with other warriors, several of whom recognized Megan from the video. And I was happy.

In December of 2012 another fellow warrior from the lymphoma board, Tina, travelled down from New Brunswick, Canada. I flew into Providence to meet her and together we were off to surprise another warrior living in the Boston area, Erica, to lend support as she was heading towards her stem cell transplant.  None of us had ever met, but you would have never know it if you saw us together. And we were happy.

In February of 2013, I went to a meet and greet held by the local chapter of LRF. At that time, I agreed to be on the 2013 walk committee, 5 months later, I was chapter co-president. Fast forward to today and I am on the regional council, helping wherever I can. It’s very rewarding volunteer work, although I would classify it as a labor of love.

Here we are, it’s November of 2014, and I have an awesome lymphamily, some still battling as I type this and the group grows all the time.  I am only 2 1/2 years in remission with the specter of a possible recurrence one day still fresh in my head.  I am still paying off medical bills on a payment plan, my meager life savings spent on treatments. Most of my life has found its ‘new normal’. I do what I want, when I want, no putting it off until tomorrow. My doctor visits are getting further and further apart. And I am happy.

My last piece of advice- don’t rush back into life, you need to listen to your body and work it back in slowly.

The support bracelets I bought right after diagnosis are inscribed with “No One Fights Alone”.  To me, it’s not just a saying, it’s a way of life.  I feel it’s whom I was meant to be and what I was meant to do. I have taken far more from lymphoma than lymphoma has ever taken from me. I don’t sweat the little things anymore.  I stop to smell the flowers, admire the sunsets, and I stop to feel the rain pound on my face.  I still have a dislike for shoveling snow, but hey, that falls under the “little things” category.

One day, a cure will be found for lymphoma, but until that time, I have lymphoma, and I’m happy.”

Jeff

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