Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “January, 2013”

Why Travel To New York When You Live Here?


“Don’t let economics determine where you get your care.”  Linda (a friend of mine and former long term survivor).

It is really an exhaustive day, a nearly five hour commute each way, sometimes just for a 45-minute appointment.  On a normal day, I have several appointments scheduled up in Manhattan at multiple locations.  One of the most frequent questions I get asked almost as frequently as I travel, “why do I go all the way to New York City for my care, when there are so many doctors around where I live?  It is a reasonable question, but unfortunately has a historical and statistical answer.

First, you need to understand what it means to be a long term survivor.  There is no set number of years to qualify.  Although statistically, five years seems to be a magic number. ” 80% of such and such live to five years without blah blah blah…”  It used to be that not much attention was paid to patients who survived decades later.  Not by the doctors.  Not by the pharmacutical companies.  Not by society.  So there really was not much in the books concering long term cancer survival.

If there are others, I apologize, but I am currently aware of only one doctor who has done this study for decades.  That would be Dr. O up at Memorial Sloan Kettering Cancer Center.  Dr. O has been studying Hodgkin’s Disease and late effects from treatments for decades.  Along with Dr. H out at Stanford U., the two of them are the top doctors in this field.  They both operate what are called “survivor clinics.”  A survivor clinic is where I go for all of my long term side effect issues.  They know the follow up testing that needs to be done based on the treatments you received.  And here is the crazy thing, at least in Dr. O’s case, he routinely has my primary care doctor back home do all the work, treatment and follow up.  And they work like a team perfectly.  My doctor admits that this discipline of knowledge is relatively unknown to her, just as most other doctors as it is not included in their studies.  Where I benefit, is that she has an open mind.  If I were a normal forty-seven year old man, most likely she would not order certain tests once, let alone annually.  But Dr. O has the background, the studies to support how to follow up and treat those of us who were never expected to live this long.

Over time,mor clinics have popped up across the country, Duke University. Dana Farber in Boston, Vanderbuilt, and I believe there is one in Seattle.  There are plenty more.  There are also facilities that specialize in particular systems effected by cancer treatments such as radiation.  The Clevelan Clinic is one of the, if not the best cardiac hospitals for patients who have had radiation therapy to their chest area.

Through internet support, I had known so much about MSKCC already, I just had to figure out how to get there, and if needed to frequently, the logistics of how that would work out.  I could have gone down to Philadelphia where there is another good survivor’s clinc, but unlike MSKCC, I had not heard of anyone going there.  This is not to say they were not good.  Of course they are one of the top hospitals in the country for treating cancer, it would only make sense that they would be great at managing survival as well.  But I had the opportunity to see Dr. O, who I consider the best in the world for dealing with long term effects.  And I was lucky as well as blessed to get to be his patient.  He does for me, what should have been done twenty-three years ago, and what is done automatically now for new cancer patients, follow-ups.  He has a plan, just for me.  He has another plan for another patient, and so on.  I see several disciplines of medicine from gastrointestinal, cardiac, pulmonary, physiatry, psychiatry, and ENT.  We are all different, but under his care, we are all treated with the best care available.

Because some of our side effects are so unusual, it requires knowledge of all the radiation strategies used decades ago, and the various side affects of chemotheraputic drugs.  This is where I come in, where you might come in.  Many of us do not have our records any longer from decades ago.  Mine were incinerated.  But Dr. O was able to figure out the protocol for 1988 for me, and the dosages, and that is what determined his plan to follow me up with.  Now of course, it is not spot on.  My body has decided not to follow even Dr. O’s book.  But anything that occurs with me, he is made aware of it.  My primary care doctor is made aware of it.  I make sure that everyone involved in my care is made aware of it, and has copies of all pertinent reports.

So why do I go to Manhattan, on average once a month, if not twice?  Peace of mind.  I do get a lot of time to meditate to help me relax which is something I have a hard time doing.  But I know Dr. O will leave no stone unturned if I complain about it.  I knew each doctor that he refers me to, will treat my case as legitimate without having to waste time justifying everything.  But as part of my treatment team, I need to know that I am included in everything being decided.  And he does just that.

Pollo, The Happy Golden


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Wendy and I were dating close to a year, when we both acknowledged our love for dogs.  We both had dogs when we were youngter, but as adults, never had the opportunity.  We both had our favorite breeds, but there was no denying who we were going to adopt when we met the little golden ball of fur.

Pollo was a tiny fourteen pounds of pure puppy energy.  Wendy had two cats when we moved in with each other, and they both adapted to Pollo.  They were all the same size.  I have video tape of Pollo and Dusty (our gray cat, sadly no longer with us) playing with each other, wrestling all over the floor knocking things over.  Dusty loved to hide on the steps and as Pollo walked by, without warning, would lunge off the stairs at Pollo in a feline ambush.  It was hysterical.

As he grew, we talked about the need to “take care” of Pollo.  We were not going to be breeding him (another post), and we did not need any accidents.  The other thing we did not want to have happen, is Pollo humping anyone.  I have only ever had one dog ever jump on my leg, and it was not funny.  But what was funny, is Pollo’s instinct.  In spite of not having any example, had he seen a female dog, he definitely would have known what to do.

We came home from a carnival with a prize that I had won for Wendy that evening.  It was a Siberian Husky stuffed toy, about sixteen inches tall, the perfect height for Pollo at the time.  It was not long before we nicknamed the toy, “humpy dog”.  Well, Pollo got bigger, and too much for “humpy dog”, it was only logical that he left other dogs alone, did not hump anyone’s legs, that we had to get Pollo something more his size.  Enter “Humpy Bear.”  Pollo was just past thirty pounds when we brought “Humpy Bear” home and they were best pals ever since.   If you ever had a stuffed toy that over time had years of kid drool all over it, well, that was “Humpy Bear.”  But Pollo could not get enough of her.  We actually had to put her away just to give Pollo some rest.  But anytime we went near the garage door, Pollo knew she was just on the other side.

Pollo has never been anything less than a loyal friend.  His feeding serving is split between the morning and evening, and he spends his days with two other felines and a guinea pig while we are at work.  As we come through the door, his tail never stops wagging and he has a grin from one side of his muzzle to the other.  “Quick, let me out, feed me, let me back out, then pick a spot, sit down, and I’ll lay down next to you.”  And that is where he stays the rest of the night, by my side.

Every now and then, my youngest daughter likes to challenge me that Pollo is “her dog.”  And once in a while, he will oblige her and disobey me to follow her commands.  But night after night, here he is, by my feet, dreaming away.  When he wakes up, he wants to be taken out again, and will then come back in and stay by my side.

Pollo will turn thirteen soon, which is long for a golden retriever.  I have lots of great memories with him.  His energy level is the same as it was twelve years ago, though he has given up humping stuffed animals.  But he still sits in front of me, when he wants to go outside, with the smile that has never stopped.

Happy Birthday Pollo.  On days that I was not feeling well, you were there for me.  When I needed to relax, we went for nice walks.  And when I felt the need for competition, you jumped into the pool with me from the diving board.  Pollo, you are truly this man’s best friend.

Stay Home If You Are Sick? What If You Cannot?


Your child has a fever or vomits in school, you get the phone call to come and pick the child up.  Even when there is only ten minutes left to go in the day.  Last year our school district came up with some goofy policy in dealing with lice.  To be honest, I am not sure who does the actual determination as far as contamination when it comes to eggs and nits, but once again, the kids get sent home.  For the child, it is no big deal.  If there is homework missed, it would probably go home with a classmate if it was important, or a test would just be made up when the child returned to school.

But as adults we are expected to endure much more.  Not only are we expected to get to work, crawl into work, or be rolled on a stretcher into work, but we are expected to be exposed to all kinds of germs, bacteria, and viruses.  Currently, we are in the midst of a major flu outbreak.  It all depends on which media source you want to listen to, to determine just how bad the outbreak is every year.  A few years ago, it was the bird flu that was concerning everyone.  Last year swine flu acually led to my company having an attendance policy just for that outbreak.

If an employee had any sniffle, the company wanted you to make the decision to stay home.  Of course, we had a strict attendance policy that did not pay the employee for the first three days out sick.  But if you were sent home from work by health services suspected of swine flu, you were not allowed to return to work for seven days.  So the employer sends you home at your expense for three days and then you get paid for the remaining four.  The kicker is that the reprimand system kicks in at five days.  Nine days out you are suspended for five days (that is right, you are suspended five days for inconveniencing your employer if you are sick nine days in a year).  But at day twelve, potentially you will be fired, for being sick.

Consider this, whether paid sick time or unpaid, absenteeism is a huge expense for a company to absorb.  It is definitely worse if the employer has to pay the absent empoyee to do nothing at home, while expecting those who have come into work to make up the lost time, often without any extra pay.  So it becomes an accepted and tolerated procedure, reprimand the employee for not coming in to work, whether withholding pay, or by punitive actions such as suspensions and terminations.  The ironic thing is that this usually has no impact on the person who abuses any attendance system but has exactly the opposite effect on the employee with the legitimate illness.

It is normally the employee with the legitimate illness who is not used to getting a paycheck deducted with sick time.  Often times those employees live on budgets, so the stress of not missing pay from the check has the potential to make things worse.  So the reaction is for the employee with the legitimate illness to force themselves to work.  The employee is already at risk because of the depeleted immune system, but with physical exertion and exhaustion, the chances of recovery or worse, the illness becoming more dangerous,  has to be recognized at least as unfair. 

And if there is no concern for the legitimately ill employee, there should be even more disappointment in the concern for the other workers who are not contaminated with whatever bug the sick employee is dealing with.  So while the media spreads global fear of an Armageddon-like epidimic of flu, employers with their absentee policies actually contribute to the spreading of illnesses like the flu, strep throat, and other contagious diseases. 

If you are watching the bouncing ball, one sick person is bad, but risking several sick people is okay.  The cost of lost labor for one employee is bad, several employees out is very bad from a lost productivity point of view.  But that is exactly what employers create.

There is one final critical thing to be considered.  And it something no one, sick employee or greedy employer does not even consider, because it is something that neither can see.  There are people in the world, and especially in the work force who have what is called a compromised immune system.  A compromised immune system can be depressed supressed, compromised, and a few other descript conditions.  And unless one of those less unfortunate patients speak up, there is no way to know.

I am one of those who have a compromised immune systems.  I was not born this way, I was made that way.As part of the staging process of my Hodgkin’s Disease and determining the need for chemotherapy or radiation or both, a procedure called a laparotomy was performed.  One of the things done during this surgery was removal of the spleen to see if the organ is riddled with Hodgkin’s.  It was considered “no big deal” as I “didn’t really need a spleen” as others do without.  It was actually quite commone, not just for staging cancer, but in many forms of trauma, the spleen was removed.  This creates a condition for a patient being declared “asplenic”.

In recent times, it has been realized just how important the spleen is to the human being.  The spleen kickstarts your immune system and keeps it fighting whatever is fighting against your body.  For example, have a cold?  Your spleen helps to fight it.  Scrape and cut your knee?  The spleen helps to fight infection.  Having a heart attack?  The spleen helps to recover.  Simply put, no spleen, the chances of your fighting an infection or surviving are made that more difficult.  To help give me a chance, over the last several years, I had been given multiple pneumovax and menningicoccal vaccines.  My body does not respond in antibody production like it needs to which means that if you have a cold, I have an even bigger chance of coming down with it.  In spite of my children being innoculated for chicken pox, if there is a child at school who was not vaccinated, comes down with chicken pox, my daughters could carry it home.  Strep?  Increased chance.  Twice last year (within nine months to be exact), I was taken to the emergency room to be diagnosed with two different pneumonias, one case being septic, the other double.  But both types were determined to be “Community Acquired” which means I got it from someone else.  Someone else who was sick and either came to work, came to church, or some other public passing, created a near-fatal situation for me.  No, I know it was not on purpose, because they did not know I was at an increased risk or surely they would have avoided me.

My comments are more than just pushing for hand sanitizer every two feet or training everyone to cough into their elbows.  It is about awareness and consideration.  The flu might not be fatal for the majority of people, but for some, there is an increased risk.  Unlike last year when my employer forced a swine flu absence policy, it does not show any signs of improving preventive care today.

Remember Jim Henson, creator of the muppets?  Died of complications of strep, originally thought t o be pneumonia.  He was also asplenic.  In spite of agressive treatments used on asplenic patients, the creator of Kermit the Frog passed away at the age of 53 after two cardiac arrests.

I should not have to state publicly that I do not want to die, and that I do not want to catch what someone has.  It is common sense how to prevent the spread of things like colds and flu, clean hands, and staying home when you are sick.  I only wish employers realized that people do get legitimately sick and while there are those who play the system, those who do not, should not have to pay with their lives.

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