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 firstname.lastname@example.org .
Michael, Karen, Peter, Kim, Ardeth, Linda, and so many others, I miss you.