Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “April, 2014”

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.

“Hooper, We’re Going To Need A Bigger Boat”

It is early morning, April 17th, 2008. It is considered a cakewalk, routine surgical procedure. Insert a camera into my groin, obviously not a Sony DVD cam, but a tiny camera that would traverse through my body to locate exactly where any blockage, or blockages would be, and then place a stint to open the blockage(s).

It had been nearly twenty years since my last surgery, a laparotomy for staging my Hodgkin’s Lymphoma, but this was not going to be anywhere near as invasive or disruptive. In and out, on the same day, perhaps just a little sore.

That was how it was supposed to go.

I woke up from my anesthesia at 3:00, to see Dr. Chris at the foot of my bed, telling my (then) wife as well as a friend who stopped by to visit me, “we have your husband set up for emergency bypass surgery tomorrow. He has three confirmed blockages, but the most important one is the LAD. It is blocked 90%.” Then my friend blurted out, “Oh my God, it’s a widowmaker.” Dr. Chris recognized the term and quickly chided her saying, “we don’t really like to use that term, but yes, you are correct.”

The main artery going to my heart had grown damaged over the years from the major exposure of radiation therapy, nowhere near what is used today. Dr. Chris put it simply, I have to be the luckiest man alive. It was not a question if I was going to have a fatal heart attack, but when. Four months I had the symptoms and ignored them.

The next several hours flew by, as I was rushed from pre-op test to pre-op test. Finally around 11pm I was allowed to be left alone, but in four hours, I would begin to be prepped for the biggest surgery of my life.

Lace ‘Em Up!

So it is April 16, 2008. I am supposed to report to the cardiologist’s office to do a treadmill exercise and have some imaging photos done. I have still not made any kind of connection to the chest tightness, being in a cardiology office, and an imaging study. I was not in excruciating pain like most others that I have heard having a heart attack. I was one of the first patients in the waiting room. I was starving and definitely sleepy with no caffeine in my system.

The first thing I had to do for this test, was to go back to a prep area, where a catheter was inserted into my arm so that a radioactive dye could be injected for the imaging part of the study. Once that was completed, it was off to the x-ray table where the first set of photos were taken, without any stress upon my heart (again, I still had no idea that is what was being looked at).

With the first set of photos done, it was off to the treadmill. I was not sure what to expect. I had all kinds of wires hooked up to me to allow for an EKG to be done during the “walk” and a blood pressure cuff had been placed on my arm. It was explained that every three minutes the belt would speed up, as well as the incline would increase. I did not know how long the test would go. But it did not take long to stop the test.

Something happened on the EKG with my heart. No one would explain what, but after just two minutes the test had been stopped. Of course me being naïve, thought, “hey, this wasn’t so bad.” I was taken back to the waiting room where I was allowed to have some milk and crackers, and wait for another round of pictures. Another shot of dye pushed through my veins, up on the table I went, and then sent back to the waiting room again, to be told that I was done for the day. That is not what happened.

Instead, as time went on, I watched one after another, who came in after me, leave before me. Now my cylinders were clicking. Something was wrong. And just like that, a nurse called out to me, and took me back to an exam room and said that the doctor wanted to have see me.

I will call him Dr. Chris for the purpose of his privacy, came in and introduced himself. He offered me this – “I don’t usually guarantee something like this, but I am 100% certain you have a blockage.” I was like “a blockage of what?” And that calmly he told me that the pictures showed that during the treadmill test, blood was not reaching my heart as the dopplar colors had shown. But he was confident in his diagnosis and what he wanted to do. “I want you to check in next door right now into our cath lab, and we will set you up for tomorrow morning, pop in a couple of stints and you’ll be good as new in no time.”

I was really confused now. Basically there was a blockage in one of my arteries somewhere, and they would insert a catheter into my groin with a camera to locate the blockage and place a stint to open the artery. Not something that a 42 year old male was expecting to hear. Of course, the alternative was not an option, possibly a heart attack or something else cardiac related.

But just as the Kugler-Ross stages of grief, I went right to bargaining. “Look, I need to go home and take care of a few things. I will come in tomorrow morning, but I need to go home tonight.” He told me that he really did not think it was a good idea, but had no issue as long as I just went home and relaxed. Of course, my idea of relaxing, “great, I just wanted to get my lawn mowed anyway.” Dr. Chris just looked at me and asked if I had poor judgment issues. Mowing the lawn may be relaxing for me, but definitely not what the doctor had in mind.

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