Paul's Heart

Life As A Dad, And A Survivor

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.

I Saw God Today, Okay, I Went To Speak With Him

Today marks the 6th anniversary since my emergency double bypass, caused by radiation therapy I received for my Hodgkin’s Lymphoma. This is the final installment of four of my CABG.

I developed a superstition prior to any procedure I go through, or witness anyone going through, and that is visiting the hospital chapel before allowing anything to proceed. Working backwards in time, I would be rolled to surgery at 5:00am, prepped an hour before that. This meant that I would have to get to the chapel some time before 3:00-4:00am. Now if you have ever been in a hospital before, you know that staffing is very slim overnight, and with the scurrying of early morning surgeries, getting someone to take me down to the chapel was going to be tough to do. But being superstitious, getting to that chapel was too important for me not to do.

So this huge African American gentleman (resembling Michael Clarke Duncan in the Green Mile – I bring that up because that was my mentality at that point) comes into my room just a little after 3:00am. He is there to “prep” me. Okay, like I am going to give anyone who is so much bigger and muscular than me a hard time about “shaving me” down. All kidding aside, he was really nice. He recognized someone who clearly at the age of 42 was too young to undergo such a serious procedure as open heart bypass surgery. But that is, if the reason behind the surgery was a typical one.

I explained to him my dilemma about wanting to get to the chapel, and he left my room and came back with a nurse, also stricken by my age, and she offered to take me down to the chapel, warning me that time was limited because of all the surgeries about to be carried out.

So I had my conversation with Him, and then returned back to my room. And I waited. Finally, the orderlies came for me and I was wheeled to a holding area. I was surrounded by so many people who cared about me, who did not even know my name. Someone came to the foot of my bed, checked my chart, hit the gourney break, and then I was rolled into the operating room.

There are many who face open heart surgery, and have to wait weeks, and perhaps even months to get their procedures done. But this was not the case for me. I did not have to deal with the stress and worries about the what-ifs. I did not have that time. So I think I was a little better off to enjoy the scenery of the operating room. It was fantastic. All the big hi-def flat screen televisions wrapped all around the room, all the fancy equipment, more than a dozen people in the room. It was amazing, all for me and just my little heart surgery?

And then I heard it, “He’s too young for this.”

A mask had been placed on my face, and that was the last I remember before the wizard fixed the tin man’s heart. I woke up in a darkened room in the intensive care unit surrounded by machines, but only one person in the room, a nurse named Joe. He took the time to explain to me that I was okay, and that if I felt any pain (as I should, my chest had just been cut and cracked open), he would help me. But he stressed to me that I was going to be okay. He was with me all evening of his shift, when my nurse from my catheterization from the day before stopped by to check on me (come on now, who ever really thought nurses cared about their patients – I know mine do) while she was on her break. I was happy to see her because she was a familiar face to me from before the surgery. Together they helped to clean me up, and position me. Later that night, I would meet my nurse for the overnight. Her name was Jackie, a bubbly young woman who also cared about her patients. She spent a lot of time talking to me, keeping me calm. I had never been in a situation like this before, hooked up to all kinds of machinery, and I am glad that I had the caregivers that I did to help get me through those initial twenty-four hours.

The next day would be amazing as I was to transition to next unit, Transitional Care. But the catch was I had to walk to it. And it was the length equivalent to two football fields in length. Sure, they rolled a wheelchair behind me because they figured I would need a rest at some point. Let me tell you, it is unbelievable that you can feel so completely wiped out following this kind of surgery, but I was unbelievably weak, but determined. I did walk from my intensive care room all the way to my private room. And then when I was told that I would be expected to take 3 walks per day, I was already up to six. When the physical therapy had me going up a flight of stairs, when they were not looking I went up two more (okay, that was definitely not smart, nor were they happy with me for doing it unattended).

That was six years ago today. I was born on December 19th. And on March 3rd, I celebrated my second birthday in life when I heard the words, “you are in remission.” And on April 18th, I recognize my third shot at life with blood flow going through my heart like it needed to again. It was on this date six years ago that I learned a lesson that my oncologist had not told me decades before, that while you may someday be cured of your cancer, you are never done with it. And so, I recognized and began my journey as a long time cancer survivor. I am now getting the follow up care that I needed then, and need now, to catch the side effects that still develop before they get to the point of critical.

I am not immortal, and in spite of my many opportunities to start taking care of myself, I believe that I am finally getting a chance to recognize and commit to that process. My story has, and will have a happy ending. Sadly, too many that I have known in the years before, and the years since, do not. And it is for a number of circumstances, lack of experience and knowledge of long term cancer survivors, and the survivors themselves not being aware of the “gifts that keep giving”…their treatments. Only recently has medicine recognized that if survivors of diseases are going to live longer than five years, studies need to be done to find out what the lasting side effects are beyond those five years. Myself, and many others have plenty of things to say about the things that happen beyond five years.

But for me, it is too late. All that can be done is manage my side effects and treat them as they need. But for those who are going through treatments, or have just finished, or in remission a couple of years, there is so much more that could and should be done for you. And that is what I want “Paul’s Heart” to be about. Awareness. I hope that everyone who reads this, will share it, and like it on the “Paul’s Heart” Facebook page. The more cancer patients are aware of the risks, the better they will be to watch out for them. Too many lives have been lost, because doctors just “didn’t know”. In the 21st century, and as long as the battle against cancer has gone on, this just is not good enough.

My heart surgery was necessary because of the excess radiation that I was exposed to during my treatments (four times the lifetime maximum – thankfully they no longer do it). But I was also exposed to various chemotherapeutic drugs that cause havoc on the heart, lungs, bones, muscles, various other organs. My list of side effects are long. But the great news is that I am involved in a survivorship programs that recognizes and has diagnosed all the issues that have developed, and while they cannot be reversed, they can be managed. And management is key to maintaining my sanity through all of this.

I will have plenty more posts about survival issues, especially pertaining to relationships. For those of us who had relationships during our cancer battles, we know the stress and tolls they took on with cancer, and they are just as bad during survival. Please, if you have any questions, feel free to ask them by writing me at .

Michael, Karen, Peter, Kim, Ardeth, Linda, and so many others, I miss you.

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