Paul's Heart

Not Being Discussed About Health Care

There is no argument.  Health care in the United States is messed up.  The system set up to take care of us, makes us the only country in the world to profit off of its sick and dying.  Health care in the United States is for the benefit of those only who can afford it.  I have railed against both the insurance companies and big Pharm for their corporate greed.  It goes without saying, I am an advocate for universal health care, as a right, not as a privilege.  And I understand that we are no longer a country that cares about its fellow man or woman, and that if circumstances beyond a person’s control have left them unable to obtain insurance, well then, too bad for that person, some do not want to pay for them, even if it means paying less themselves.  Some people will not help another.  They just do not care.

I have written many posts about this.  But today’s post is not about the greed that is leading to American citizens, adult and children to lose their lives, because they could not afford their care.  It is about a care that has not gotten better.

In the first half of my life, the joke used to be that my doctor would only see me for a seasonal allergy shot.  In 1988 I was diagnosed with Hodgkin’s Lymphoma, that all changed.  In 2008, my health went kablooey when late developing side effects finally got bad enough requiring attention.  I have been dealing with these situations for over eleven years now.

The one consistent through this entire time, over 30 years?  I have had the same primary care doctor.  I still do.  It is a little more difficult to pull off as we are geographically separated over 1000 miles, but when the opportunity comes up, it is her that I go to see.  Why?  Because over that time, I have a doctor who knows me inside and out, how I make my decisions, how to help me make my decisions.  More importantly, because she is that good, that knowledgeable, that experienced.  If something else were to go wrong with me, I trust her 100% to make the right decisions given my unique health situation.

For years, I have been encouraged that I “need” to find someone locally, especially having cardiac issues.  There is no way for me to get help a thousand miles away if I should ever be in the middle of a heart attack.  And I agree.  Here is the problem.  I am 0 for 6 in finding any, and that is without dealing with an emergency.  This is just for a simple physical.  And I have my reasons, very good reasons.  One barely had any time to hear anything about me.  Another challenged my knowledge about my health and the preventative methods I go through, to maintain my health.  The worst offender, told me I had to forget dealing with anyone else I had seen, I would only deal with his people.  I was supposed to forget all of those who took care of me for the last eleven years.  I have no words to describe how I felt as I walked out of that appointment.  Florida does not offer the greatest health care even for the healthy people, let alone someone with unique complications.

But a time did come unfortunately, that I would face a situation that I would be forced to deal with the local medical community here.

Chest pain.  I have had it before.  Usually just an episode that lasts thirty seconds and would go away.  I have had this happen many times, last time actually being checked about it, back in 2012.  Emergency room diagnosis, was “something did occur, not sure what,” and I left.  But this time, the pain did not go away.  And while I did not have any other symptoms of having a heart attack, having a history of two heart surgeries, and having other cardiac issues, I made the decision to go to the hospital last month.  Spoiler alert, I am sitting here typing this, it was not a heart attack.

This post is about what happened during those thirty-six hours while I was in their care, or lack of.  While I do rail against the greed of the insurance companies and Big Pharm, the actual care needs improving just as much.

Upon arrival, I was “triaged”.  This is the technical term for an interview and vital sign check before taking you back to the emergency room.  It is during this time, an “identification bracelet” is placed on you.  I bolded that and italicized it.  Why?  Because the entire time that I was in the ER, that bracelet was never looked at once.  Sure, verbally my identity was confirmed, but that bracelet is supposed to be checked.  Now you may be saying, “Paul, what the hell is the big deal?  You know who you are.  You answered the person.”  One of the first things ordered for me, was a chest x-ray.

As a tech rolled through the ER with the portable x-ray machine, he stopped at the bay next to mine, and said, “OK Mr. Edelman, I am here for your chest x-ray.”  The patient while awake, just sat there while the tech began to position the patient.  At this point I called out, “I am over here.  I am Paul Edelman.”  The tech rolled the unit over to my bay, positioned me, snapped the x-ray, and left, WITHOUT VERIFYING MY ID BRACELET!!!!

WTF!!!  Just moments later I would learn that the individual in the bed next to me, was dying.  Can you imagine me getting a copy of his x-ray with my name on it?  OMG!!!  I had blood work done.  They never checked my ID.

A patch with nitroglycerin was put on my right shoulder, and I traded the pain in my chest, for a decent sized headache.  That is the trade off for opening ALL blood vessels.  Preliminary testing revealed that I was not having a heart attack, but definitely something was happening.  At that time, I gave all the information and history, on me.  I told them how to get all of the records that were necessary to keep me alive, and to keep them from making mistakes.

I would be kept overnight for observation, and scheduled for cardiac testing the next morning, a nuclear stress test, and an echocardiogram.  I have had several of these before, so it was no big deal.  As I was completing the stress test, I could see the EKG strip, which I did not see anything abnormal for me.  And when I was finished with the test, had the final x-ray taken for that test, and went back to my room, to way for the echocardiogram.  There is just no excuse for what happened next.

A resident came into my room, and had revealed to me, that I had an “abnormal” stress test, and I would be heading downstairs for a catheterization.  You see, when you have an abnormal stress test, it is pretty certain you have a blockage somewhere, and it needs medical intervention.  There was only one problem.  I had just had one of these caths, six months earlier.  And my issue was corrected.  There was no way I was letting them go near me at this point.

Me:  Um… okay.  Here is what I am going to do.  You will not be doing a catheterization on me.  You are going to discharge me and I am going to go right to the airport, and fly to the doctors that know what to do with my unique health conditions.

Dr.:  I’m sorry, you do not understand.  You cannot fly.  You need this taken care of.

Me:  I do understand.  You do not understand.  I am not letting you or anyone here do anything.

The doctor left, and then I was rolled down for my echocardiogram.  Great.  That was going to be a fun test now that I was all stressed out.

After the test was done, I was taken back to my room.  A nurse came into my room with a huge smile on her face.

Nurse:  Ok Mr. Edelman.  You got your wish.  You’re going home.  Everything is perfect!

Huh?

Me:  I’m sorry, what?  What do you mean everything is perfect?

Nurse:  Your stress test is normal.  You can go home.

Me:  That is not what  the doctor just told me an hour ago.  I want to see my cardiologist… NOW!

For a moment, I was thinking that I was that much of a pain-in-the-ass patient, and they were simply being accommodating and getting me out of their hair, which of course is the wrong thing to do regardless.  But then my doctor came in.

Me:  Doc.  What the hell is going on?!?

Doctor:  Well, the good news is your stress test is normal.

Me:  That’s not what the other doctor said.

Doctor:  Um, yeah.  It turns out that she had not read the whole report.  She had not seen the x-ray pictures that were normal.  Your EKG was abnormal, but the pictures confirmed everything was okay.

Me:  My EKG was abnormal?  She did not wait for the pictures?!?  What the fuck man!!!!  I know my EKG is abnormal.  T-wave inversions.  Right?!?  Even I know that I have them.  And if you had verified my medical records I gave you, EVERYONE would have seen that issue.  But when you tell me I have an abnormal stress test, I know what the fuck that means.  I have been operated on twice because of that.  What the hell is wrong with her?!?  Who does this shit?  She was going to have my cathed again?  Unnecessarily?  Exposing me to risks that this hospital is not prepared for, and clearly not skilled?

I left the hospital about two hours later.  I obtained my health records of the visit.  I want to say I was shocked, but I was not.  Under each test that was done, was the following phrase:

“no prior records to compare to”

It did not matter that I told them about my health history, or how to get my records of everything that was done to me.  Shit, I even had access to the same records through my phone.  They did not even consider them, or my concerns.  And this is why I do not have local care.  This is a major issue with our health care.

Though all agree something happened that brought me into the ER, nothing was determined or diagnosed.  Just “return to hospital should the symptoms appear again.”  Sounds like a plan, but I am going to need some extra time to get to the doctors that I know will save my life.

One final note, do not think I am ungrateful for it not being something serious.  I am very grateful.  But I am scared shitless and the quality of care, or lack of, that I am depending on to keep me alive.

Another Candle Burns

Again, I am mourning.  Yesterday, I was informed of another long term survivor of Hodgkin’s Lymphoma in my circle had passed away.  And I want to clarify what I mean as a “long term” survivor, as I do not want any of my recent followers or readers to believe that this is a potential fate for them.  Because in reality, as much as they may be annoyed by this fact, cancer patients today, now have a protocol in place, to be followed up for the rest of their lives for any possible late effects, to catch them in their beginning stages before there is a chance to develop into something major, like I have written in the past.

This is always tough news to receive amongst my fellow survivors.  Because those of us who have been diagnosed with issues related to our treatments 20, 30, 40 years or more ago, until recently, had been forgotten.  And only upon learning our medical status, did we only have a chance for ourselves to finally breath, knowing that we were not crazy with the way we felt or that our bodies felt.

I belong to many groups related to Hodgkin’s Lymphoma and long term survivorship.  Each group has a large membership based in the hundreds to the thousands, spanning the globe.  And what we get from each other, we cannot get anywhere else, including from our own caregivers, understanding and knowledge.  But this fraternity comes at a price, emotional attachment.  And that price gets paid, when we receive word that another survivor has passed away.

Yes, it can and does get overwhelming.  Some of my fellow survivors must step aside, because of the overwhelming feelings, not just for the loss, but out of fear what they may face one day.

As survivors, we can do one of three things.

We can just walk away, and live the best life we can, oblivious to the ills tormenting our body.  When our time comes, it comes.  What we do not know, cannot hurt us, and in the end, we will never know.  But boy life will have been great.

We can know what is wrong with our bodies, and do what we can as it happens, but not spend any time dealing with the issues while they are manageable.  Because that would mean us thinking about our fate, and that is just no way to go through life.  Instead, “okay, dealt with that.  Time to move on.  Oh, another crisis, deal with it, and move on.” And so on.  The only problem with that, is if we wait too long to deal with an issue, it becomes to late or at best too major.

And the third option, the one that I prefer, is to accept what has been done to me, to give me nearly thirty years of survivorship.  I have had four major events in my life since my HD days, all caught “last minute”, because I was not followed up properly.  I was living life, travelling, playing ball, and spending time with my kids.  But those first two options have not been an option for me over the last eleven years.  You see, I need these issues dealt with before they become too extreme.  My late effects doctor told me, our goal is to not only witness my daughters graduate, possibly get married, and maybe even give me grandchildren.  But there is only one way that this can happen.  And it goes beyond taking care of myself, knowing the late effect issues, and having them taken care of.

It also takes the many people I know, who have been there, done that.  We all rely on each other as survivors to help us get through each health event, and also to be a shoulder when we say goodbye to another.  As time goes on, this happens a lot.  And it does not get easier, because we grow so close to each other.

And so, I light another candle today, for another Hodgkin’s survivor.  You will be missed.

Hair Today, Gone Tomorrow

Though I am running posts pertaining to my 30th anniversary battling Hodgkin’s Lymphoma, this post is about how the one seemingly minor side effect to others, can still have a major emotional impact decades later.

Samson.  A biblical character of superhuman strength, comparable to that of Hercules and Superman (though I prefer the Incredible Hulk, for the purposes of this post, I need to use Clark Kent).  This strength would enable him to fight off his enemies.  However, like all superheroes, they have a weakness.  Superman had kryptonite.  Samson’s weakness?  His hair.  That is right, his long locks were the difference to fighting off beasts and armies.  Betrayed by his lover, Delilah, she had a servant cut off his hair while he slept, and yep, he lost his powerful strength, was captured by his enemies, and tortured.

For most of my life, I have enjoyed long hair, normally around collar length.  It was just a preference.  This is the last known photo of me prior to me beginning chemotherapy for Hodgkin’s Lymphoma.  I can tell because of my “thinned” beard, caused by radiation I had prior.

Cancer patients are normally given a list of side effects that can be expected as they begin treatments.  Normally, those are the short term side effects, as back in the 20th century, long term side effects were not really studied because, well, we were not expected to live decades after our battles.  But we do.

Of all the side short term side effects, nausea, pain, sleeplessness, fatigue, even fertility, hair loss is the most difficult for most, women and men, to deal with and accept.  There are so many emotions that we experience once we begin to lose our hair, if it happens.  (It should be noted, not all chemotherapy will cause hair loss)

I had asked my doctor if I should just go ahead and shave it all off, to mentally prepare myself for the next eight months to a year.  He told me it was up to me.  I could not bring myself to do it.  So instead, I just got my hair cut short, to adjust to the new look that was coming.

A few weeks after that first treatment, and it literally happened all of a sudden, clumps of hair.  On my pillow.  In the shower.  I am one of the lucky ones, a very full thick head of hair (not to be confused with having a thick head which I also have).  I did not lose all of my hair, but enough to be noticed.  To be stared at.  People would now know something was wrong with me.  Like Samson, the loss of my hair, affected me as well.

With this hair loss occurring during the winter, I also got a rude awakening with the first snowfall.  I did not make a habit of wearing hats, but all it took was the first snowflake, painfully hitting an exposed part of my scalp, and you bet I wore a ski cap from then on, not just for snow, but for rain as well.  Honestly, I have no idea how my follically challenged friends deal with precipitation.

But unlike the hair loss from radiation therapy, hair continuously grows, even as the chemotherapy kills the older hair cells.  So, even as you lose hair, new hair grows.  And of course, once treatment ends, you end up with as much hair, normally, as what you started with.

And so, I let my hair grow, and grow, and grow.  Yes, I wanted it back to the length it once was.  But I had another reason for doing it.

As you can see, the lasting effect from my radiation therapy, I have this “skunk tail” of hair that I call it.  Radiation destroyed the hair on the left and right side of my spine, which was protected from the treatments.  With a shorter hair style, this area would be constantly exposed.  Admittedly, as I am always assured, you will not notice it.  But I know it is there.  It was hard enough for those two years, being looked at uncomfortably because fate dealt me a cruel card.  For me to move on, I needed to cover up all evidence of what I went through.  Sure, I could talk about my experience, and all people would notice was the happy ending, a return to being normal.  I would be accepted again by everyone because of who I was, not what I had become.

Legend has it that Samson’s hair grew back, and his strength returned.  He had defeated his enemies who had tortured him in his weakened state.  He was once again, Samson.

I have kept my hair a long length since the end of my treatments for most of my survivorhood with the exception briefly during my second marriage.  I went through various phases with styles, ashamed to say including the mullet phase.  But up until a couple of days ago, this was basically what I looked like, except the hair was about 3 inches longer.  As I said, I have a very full and thick head of hair.  Also I will point out, no coloring.  It is not needed as I have very little grey that I accept.

That all changed two days ago, in a very harsh and unexpected way.  I do not get many haircuts in a year, sometimes as few as three.  And the reason is still the same, the bald patch on the back of my skull.

You see, in my survivorship, I deal with a lot of serious health issues as a result of my treatments.  What you see looking at me, is a shell.  It is what I want you to see.  I am protecting you.  I am protecting me.  That is what a shell does.  If my hair looks normal, you will not suspect anything is wrong with me.  The average person could not handle discovering everything that many of us long term survivors have to live with as far as the health complications we have.  Of course, the downside to that, is if you do not know something is wrong with me, then you might expect more of me than I am capable of at that moment, and get frustrated with me.  And I do not want that either.

To make sure I kept my hair consistent, just like I expect of my care with my doctors, I saw the same stylist who was aware of what had happened to me, and would be sensitive, careful, and skilled, to help pattern and maintain my hair.  For the most part, that is how it went.  The last five years, it has been that way.

I am not sure what happened this last time, but it went horribly wrong.  The instructions were simple, as always, “to the collar, and then shape and layer the rest.”  The chair I sat in was turned away from the mirror, and in spite of the amount of hair on the floor, which was a lot, I was not concerned because I expected to lost about 4 inches of growth, still leaving me with a length to my collar.

What I ended up with was a cross between Moe Howard of the 3 stooges, and Korean dictator Kim Jong Un.  Not an exaggeration either.  There are no pictures of this, as I once again, felt like I did thirty years ago.  Not every hair cut I have had has been perfect, but this took me back to the worst my hair had ever been, the end of my chemotherapy.  Once again, I lost who I was.  Worse, that bald patch was exposed again.  One of the issues I deal with in my survivorship, is PTSD.  Flashback and recollections of traumatic time periods or events are symptoms of PTSD.  And this triggered me as soon as I realized what had been done.

Unless you have experienced this type of trauma before, you cannot understand its impact.  This is different than those who baldness, or even short styles occur naturally (by the way, you all carry those styles perfectly).  My mind immediately took me back thirty years ago, remembering all too well everything I had gone through.  The struggle to accept “it will grow back” while looking at the result was the same as years ago.  Sure, it will grow back.  Samson returned to normal.  And even I had a “normal” with my hair that had grown.

I actually lost all my sleep that evening from the thoughts going through my mind.  I was beyond what the stylist did.  I was only concerned with what I had become, even at times forgetting that I was not dealing with the cancer any more.  That was how real this felt.

As I started the next day, on my way home from cardiac therapy, I made an impulsive decision to get my hair dilemma straightened out.  I could not get through the next month and a half wearing a hat like I had done before.  This new stylist was quite shocked at what she was looking at, the hair, not me.  Just like my doctors, I explained my history so that she could understand not only what I deal with, but that it is important to me.

I am not crazy about the length at all.  But what she was able to do, was correct it enough, very similar to my first cut I got after my chemo to begin to shape how it would grow back.

The obvious, I am obviously the same person, the same shell.  And it really has nothing to do with vanity or super powers.  I write the same.  I enjoy all the same things.  But surviving cancer is not just a physical thing, but emotional as well.  I can live with this new look, again, for now.  I have no choice.

And while those around me often suggested that I “needed a haircut”, they now see it was not such a simple thing for me to do.  It will grow back, and my shell will be restored again.