Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “April, 2014”

First Impressions

Just how important is a first impression? For a job interview? Very. For a blind date? Very. But how about entering one of the largest cancer hospitals in the country? Yes, it first impressions are very important.

The very first thing you see as you enter the outpatient facility of Memorial Sloan Kettering Cancer Center on Lexington Avenue in Manhattan is the concierge desk. And behind that desk is an angel like no other you can imagine. No, this angel has no wings, and is actually quite large, a man the size of a pro football player (this is my perspective as I only stand 5’7″). But unlike the aggressive football player, this giant is gentle.

His name is Nick. To many of us patients who visit MSKCC, he is known to us as “the Ambassador”. And he greets everyone as enthusiastically as the person before you, and after you. His initial greeting helps to put everyone at ease as they enter a very scary phase of their life, otherwise you would not be there. Nick offers encouragement, hope, and support to everyone he meets.

He is quite busy as he travels between MSKCC sites. I have often joked with his associates when he is not there, because MSKCC had other plans for him that day, that the hospital underestimates the value and importance of seeing Nick when we walk through the door.

I have known Nick for over six years now. He knows plenty about me, just as the thousands of others who have gone through those front doors. And now my visits include him asking about my father, battling his own cancer.

Nick is a very special man, and I will do everything I can to get him the recognition he truly deserves for making a difference in not only my life, but everyone he comes in contact.

Tonight, ABC News aired a special story on Nick. I am including the link below. Enjoy.

A Call For A New Protocol

This one is for you my friend…

While the Affordable Care Act goes a long way for protecting cancer patients and survivors with its protection against pre-existing conditions, there is one issue that is not even being conceived.

When we undergo our cancer treatments, we are subject to multiple blood tests to see if our bodies are capable of handling the toxins that are sent through our veins or body, whether chemical or radiation. If our levels are too low, treatments are either reduced or delayed until our numbers are better. This is a good thing. As a patient, you want to be able tolerate the treatments, receive the maximum benefit of the treatment, to ensure the treatment results in remission, a cure.

So great, we check the bloodwork, but what about the rest of the body? What protocol is there for following up body organs possibly affected by either chemotherapy or radiation? Sure, there is most likely a baseline study done prior to the beginning of treatments, but after that, when is the next scan of the body planned? Probably not until months after treatments end. But by then, it could be too late. I received several toxic drugs and radiation. I am going to refer to one of the drugs I was given. Now for the record, as I have spoken before about my cardiac issues having been provoked by radiation damage, I do have valve issues that have been caused by either radiation, or this particular drug. I will talk about other chemotherapeutic drugs in other posts. But for this one, I want to talk about an Anthracyclene, called Adriamyacin.

First, understand this, Adriamyacin was a critical component in my cure of Hodgkin’s Lymphoma years ago. It is very successful in treating Hodgkin’s. However, for some patients, and low numbers are often quoted, the drug is lethal and difficult to handle. Surveillance is critical during its administration, yet it is not given that priority because of the low number of patients affected. My argument is this, if you know that the drug has the potential to damage the heart, especially when it comes to young children or adults who may be smaller than the average patient, why would doctors choose not to pay more attention to the cardiac risks of their patients? I have a solution which I will get to in the end of this post, but first, I need you to understand Adriamyacin.

Anthracyclene drugs are Adriamyacin, Doxorubicin, Daunorubicin, Daunomycin, Cerubidine, Idarubicin, Idamycin, Mitoxantrone, Novantone, Epirubicin. These drugs are known to weaken the heart muscle in a diagnosis called cardiomyopathy, lead to arrhythmias, valve stenosis, scarring or some other coronary artery disease. These issues can lead to heart attacks or even congestive heart failure. Factors that play a role on the possibility of these effects are age, total dose of the drug, if radiation involved, and any other drugs that affect the heart used.

So, how do we use a drug that is extremely successful in curing Hodgkin’s, and prevent it from doing the damage to the heart? Simple, just as we do routine bloodwork, I am making the recommendation for mandatory echocardiograms or MUGA scans at the least, mid-way through treatments. Not just at the beginning, and three months after treatments end, but at the least, mid-way, so that if damage does begin to show, treatment can be changed to something that will not lead to any patient dying. Even if this protocol saves just one life, that echocardiogram is a small price to pay to prevent the loss of a life or the costs associated with extreme lifesaving measures.

I lost a friend, a fellow Hodgkin’s survivor because there was nothing in place to determine that the Adriamycin had damaged his heart during the treatments. Like me, he never complained during his treatments about how he was feeling, even if the doctor was specific in questioning, nothing was going to stand in the way of getting through treatments. Chemo is supposed to make you feel like shit. We should not have to repeat it. But had the doctor ordered a simple echocardiogram or MUGA scan, I cannot say for certainty that would have prevented his demise, but it certainly would have identified the cardiac issue sooner, than later.

Do not misunderstand me, the drug is a good drug for curing Hodgkin’s. But even the small risk of a fatal side effect warrants the screening tool of a simple echocardiogram or Muga scan at the least mid-way through treatments. There are other drugs that could be used, though this one is definitely one of the best. But surveillance is necessary.

So here are two things I would like you, a follower of “Paul’s Heart” to do, in memory of my friend:

1) Pay attention to symptoms, and speak out = shortness of breath, dizziness, fatigue, chest pain, heartbeat issues, swollen feet and legs, coughing and wheezing (yes, even though you think coughing would be pulmonary related, it is a major symptom of congestive heart failure). When going through treatment, it is one thing to be tough, another to be foolish

2) This information must be made public and it will start here. Please forward this post, “share” it on Facebook, Twitter, any media. Forward it to news outlets to their health departments.

I do need to give recognition for some of the information that I supplied here, and it comes from the Children’s Oncology Group (link is listed on the cover page of this site). But most importantly, I need my friend to know, I will do all that I can to prevent someone else from having to go through the same fate.

What Easter Used To Mean

First to all those celebrating the Easter holiday, Happy Easter. There was a time for me years ago, when the Easter holiday was about the religious story behind the holiday, and its significance, and when I was a child, it was all about the loot left by a mythical bunny rabbit.

Splitting my time behind the families of my ex-spouse’s families and my families was a difficult thing to do, because they always wanted us to spend all day, or at least most of the day with their families. Mine in general did not get much consideration. But one holiday that I fought for year after year, was Easter. It was the one holiday that I gave my father. There was no negotiating, it was his holiday. I put no time limit on the amount of time we spent there until we went off to my ex’s families. It was a day that my dad looked forward to, hosting a major meal, prepared by his kids, and we packed his small home. The highlight was watching my brother and I doing dishes. When I adopted my daughters, we held a miniature Easter egg hunt for my daughters. My dad asked for no other holiday or time of the year. This was the only thing he ever asked of me.

Tomorrow is Easter. But Easter will not be spent like other years. He is in the latter stages of lung cancer. There will be no big feast. In fact, he will not even get to see his granddaughters tomorrow. This is partially due to an arrangement I made with their mother, but there was a change with being able to see my dad that was not planned.

No, it will not be the usual Easter holiday for me. I will go to visit him later in the afternoon. In my heart, I am looking forward to Easter next year, when there is not so much heaviness in my heart.

I want you to know, that if you do celebrate this holiday, I hope it is a wonderful celebration for you. And even if you do or do not, I will leave you with this, so that my post is not a complete downer. Keep an eye on the internet for the annual Easter cartoon of two chocolate Easter bunnies. One is missing his rear end, the other is missing his ears, as those are popular pieces for kids to chew off first. So the bunny with no butt says, “My butt hurts” and the rabbit with no ears says “What? I can’t hear you.”

Happy Easter.

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