Paul's Heart

9 Years Later… I Still Miss My Dad

I have been missing in action here for the last few weeks. I made the rare decision, that for the first time in my life, I was going to focus on me. For as long as I can remember, my attention has always been on everyone else, except for me. Admittedly, I honestly felt, this was the only way to give my life a purpose. The option of calm sacrificed for intensity, often referred to as some of my friends and co-workers would say, drama. I was often referred to as being “attracted to drama.” I denied this every time it was said to me. I mean seriously, who would really choose to want to live their life, constantly on adrenaline filled strife. I am one who knows first hand, that the stress created, is capable of causing death, in my case, it almost did just before I had my heart surgery back in 2008.

With a major chapter in my life now closed after nearly ten years, my second divorce, and my health in a stable pattern, for the first time, I am not dealing with any “drama.” With clear thinking, not to be confused with my memory which is a different situation, I now focus on the things that bring me joy, and to be able to dream of things to come. I can think about my younger daughter’s final days as a high school senior, her prom, and soon to be graduation, things I never thought I would live long enough to experience. The timing could not be better for me.

And then today comes, May 20th. Two things happened on this date. I got married for my first time, soon after my first attempt to be cured of Hodgkin’s Lymphoma. The second thing that happened, my father passed away on this date, now nine years ago.

A month and a half after this photo was taken, my Father passed away from complications of lung cancer. Over a year earlier, doctors had been encouraged that his cancer was at the best stage for remission, yet somehow, the cancer had a different plan, an aggressive and rapid plan, that would have us all fooled that my Dad was going to beat this, and then all of a sudden take such a drastic turn, turning terminal.

My Father asked me to be his medical proxy, also known as an advocate, because he knew with my past history with cancer, I would understand most of everything explained to him, so that I could make sure he knew what he was up against. We had a complex relationship, estranged childhood, but an adult relationship that allowed us to make amends on several fronts. Ironically, in the beginning of his diagnosis, and when he asked me to be his proxy, we talked about how he was unable to be there for me when I went through my Hodgkin’s, and now, he was actually asking for me to be there for him. Of course, I said yes. I believed that he could have no one better fighting along his side. He believed that I would always look out for him, help him to make his decisions, and most importantly, make sure his personal wishes were followed, no matter what.

I will not rehash what happened with my Dad’s cancer on this post. I have written about it several times in the past. Instead, today, I find that peace that I have been experiencing the last few weeks leaving me vulnerable now, to deal with something I was unable to do, I was prevented from doing so, nine years ago and since, grieve for my Father. The last closest family member to me to pass, was my Grandmother, fifteen years earlier. Unlike with my Dad, I was able to grieve for my Grandmother.

As my Father was diagnosed with lung cancer, I was dealing with my own health struggles. Our house was heading towards its fourth path to foreclosure. I was also involved in my second school board campaign. I had also begun the process of my second divorce, which rapidly developed dark and hostile undertones, clearly signs of the divorce turning nasty, at least for one side. Though in the beginning, we had been encouraged for my Dad, his cancer would take a turn, in spite of all the cancer being removed from his lung, preventative chemotherapy, followed by preventative radiation therapy, which seemed to ignite a fuse with his cancer, turning terminal. The school board election was over, again I had lost, only this time, my divorce got credit for interfering with the election. But my attorney began warning me, that I was not focused enough on what was happening with the divorce, and I was quickly facing a difficult situation, one that I might not be able to get out of. Rulings were going to be made, and if I did not start paying better attention, becoming more proactive, I could end up in real trouble.

To be clear, I never contested taking care of my daughters. The final situation of the household, combined with my health created a situation that left errors, resulting in a higher amount than what should have been, and would later be appealed, corrected, and overturned. But in the meantime, I needed to do what I could to honor any rulings. My employer had just put me out on disability due to my declining health, no longer able to work with my health restrictions. This left me short, nearly 50% of the amount I was expected to pay, even without my own living expenses. The order? “You need to find a way to make that money again.” This is a term called “earning capacity” – what you were making at the time, you are expected to make now, no matter what. Somehow, with my failing health, I was expected to get another job, to supplement my employer’s disability pay, which of course, how can you collect sick pay from your main employer, while moonlighting on another job? You cannot. I was put into a position of resigning from my company, leaving me with no income, so that I could look for another job that would earn me the same amount to be able to afford the court order, and have enough to survive myself.

My Father’s health continued to deteriorate, as the cancer had begun to affect his brain, clarity during conversations was becoming an issue. In the meantime, family members began to undermine my Father’s care and my efforts to make sure he was taken care of properly. I spent many nights, overnight with my Dad, keeping him company on his restless nights. The staff in the hospice appreciated that, as they were overwhelmed with their capacity. But several family members began to question his care, and my efforts. To be clear, my Father was going to die, likely very soon. But those family members did not like the fact that he was no longer receiving “life maintenance” medicines for issues like cholesterol and blood pressure, or if he would need an antibiotic. Besides the fact, these medicines were being denied by insurance because of my Father’s condition, why would anyone want to extend the life of someone who is clearly suffering?

The cruelest thing some did, was try to give my Dad false hope. I was originally approached by these family members about a clinical trial for this type of lung cancer, at its advanced stage. Because I have a history with medicine and pharmacology, I already knew my Father would never have been eligible, besides the fact he was too far advanced, he had major pre-existing conditions which would have made him ineligible, a major heart attack, two strokes, lobectomy (removal of his lung lobe). Unsuccessful with getting through to me, these cruel relatives went straight to my Dad, trying to encourage him to convince me to fight for him. That there was help.

I understand how they felt. Nobody wanted my Father to die, let alone go through this. But I was now being portrayed as no longer willing to fight for my Dad.

Meanwhile, my efforts to find employment, with a large enough salary, had come up empty. I had done some research to see where jobs were offered in the range of income that I needed. They were all out of state, some over a thousand miles away. But my attorney was stern, I needed to do what I had to do, to take care of this court order. While I consider myself a time manager by habit, I was going to redefine that term with me, with what I needed to do. I was going to have to leave the state, but I needed to wait until my Father had passed, which hospice had said, could be any time at that point. In order to get any of those jobs in the state I was looking at, I needed to have a physical address there, as well as identification for that state. It was now the end of April, my Father had gotten much worse. I needed to make a guess, ghoulish as it was, how much longer I thought my Dad would hang on. I needed to get a job for the judge’s court order. And though my Dad was no longer “there” for the most part, I know, this is what he would have wanted me to do. As he and my mother were divorced when I was a toddler, he knew all to well the wall I was backed up against, prior to his cancer diagnosis.

I had found an apartment, and was prepared for interviews. I just needed to move. I needed to guess, how soon I would be able to do this, without being in contempt with the court. I had no ability to mourn my Father’s condition as he was losing his life, I was fighting for mine. I chose May 20th to make that trip. I purchased a train ticket. Then I waited.

Two weeks had passed, and the call came from hospice. My Father’s vitals were showing he was nearing his end. It was recommended that those who wanted to spend final moments with him, to do so. I continued to bounce my attention from my Father’s bedside, to my court situation, unable to focus really on either. Though initially, it was thought my Dad’s passing was imminent, an entire week would go by. Still, not allowed to focus on my Father, the calendar was now taunting me. I was going to have to make a decision, leave for what I needed to do, or stay, and risk contempt of court, losing my best opportunity to satisfy the orders. We were encouraged to speak to my Dad, to tell him, “it was okay” for him to go. We took our time to express fond memories and thoughts of what he meant to us.

May 19th, 2014

These were the final things that I said to my Father. I told him that I forgave him for the childhood we never got to experience with each other. I was glad that we had the chance to make amends even under the circumstances that had occurred bringing us together. I told him he was a great Grandfather to my daughters. They loved him so. I told him I forgave him for the times that he could not be there for me during my own cancer battles. I thanked him for the things we shared in conversation as adults, memories I would always keep with me. Never one to show emotion, I soon found out how little control I had of those emotions. My Father had never heard me sing before, and one of my favorite songs, is “Cats In The Cradle” by Harry Chapin. I sang that song for my Dad, only able to get through half-way before losing it. But I made sure to get to the end of the song so he could hear me sing, “and as I hung up the phone it occurred to me, my boy was just like me. My boy was just like me.” I had changed the final lyrics to, “I grew up just like you Dad. I grew up just like you.”

And with that, I had to made the decision, that I needed to leave, before my Father had passed. Not because I did not want to be there for that moment. That killed me inside. But I needed to get on the train so that I had a chance to avoid the many perils my Father faced during his divorce from my mother and the decisions he made.

May 20th, 2014

It was 4:45pm, the train had just pulled out from the station about an hour earlier. My phone had rung. It was my sister. She was calling to tell me that our Dad had finally passed. One of the most difficult decisions I have ever had to make, I was angry that I could not be there for him. But as I said, I knew this was what my Father would have wanted. I spent the next thirteen hours just looking out the window, remembering my Father and the times we had in the second half of our lives.

I had asked that his memorial take place over Father’s Day weekend, the next time I needed to return home, which was also the weekend, I would find myself back in court. While mourners offered me condolences for my Dad, my thoughts were with my pending case the following Monday, which my attorney warned me, was not expected to go well. But even in his death, I was still not being allowed to grieve for him.

And this is the way it has been, every year when this date comes up. I remember every detail of that period vividly (a fete of great challenge considering I struggle with remembering five minutes ago). Instead of being able to just remember my Father, because I have never grieved for him, and being in the position I was in, during his final days, that is what reappears every May 20th, and right now as I write this.

I was hoping this year would be different. My divorce case now closed, no longer under the pressure of the court for something I never resisted in the first place. I am moving on to the next chapter of my life with my daughters, the same chapter I enjoyed with my Father as I was an adult. The only difference, I had no lost time to make up or explain to my daughters. I know my Father envied the Father I am to my daughters and he stated many times, he wished that things could have been different for us with our past. But honestly, I would not have traded our last twenty years together, a chance I am glad we had to take.

I miss you Dad.

When You Are Prepared For The Unexpected

I have a very exciting weekend planned. But somewhere in the cards or the universe, there were other plans. In my life, at least the last four decades or so, that is the way it has gone anyway. So I got a visit from “Mr. Murphy” last evening. You know Mr. Murphy, who states his law that “if something can go wrong it will?”

I had just completed packing for a visit to my daughters this weekend. I was relaxing before turning in for the night, enjoying a light snack of some Edy’s vanilla ice cream. About half-way through with my tasty treat, I felt a small “nugget” of some sort, that I thought might have just been a crystalized piece of the ice cream as I keep my freezer a bit colder than many. As my treat swished from one side of my mouth to the other, my teeth hit that “nugget” again. Clearly, it should have been thawed out, and softer. I know I was eating plain vanilla so it could not be a nut or a chocolate chip, which can be a disaster for teeth when frozen. It did not make sense to me. And then it hit me.

Being careful not to swallow the portion currently in my mouth, I began to sweep my upper jaw with my tongue from left to right. Nothing. I lowered my tongue to the bottom jaw, and began to sweep from right to left. Instinctively, or perhaps in apprehension of what I felt I was about to discover, the pace of the lower sweep was much slower, as if I could prevent what I was about to discover. Half way around the lower jaw, so far so good. Only about seven more teeth to go, then I would spit out what was in my mouth to see what foreign object was in my ice cream. Six, five, four, three… nothing yet, maybe my mind had tricked me into thinking the worst… two, DAMMIT!!!!!!!

Not the first time that I have ever broken a tooth (a reason that I will get into shortly), I knew what had happened, though I could not figure how, as I was only eating ice cream. This particular tooth and I have a long history with each other (an explanation that I will also get into shortly). With this trip coming up tomorrow, I did not have time to waste. I needed to get the tooth dealt with before I got on my plane. I had to get an appointment today. There was no other choice.

As I said, this is not the first time that I have ever broken a tooth. In fact, it is quite common for me, being a long term cancer survivor of thirty-three years, an issue created by the treatments for my Hodgkin’s Lymphoma. The first time occurred back in 2008 soon after I had my emergency bypass surgery. One of the first things brought up to any heart patient, not just a cancer survivor cardiac patient, is the need to prevent this type of situation to develop an infection. It is very common for heart disease to be discovered by a dentist, as bacteria being dealt with during cleanings, can all too easily enter the blood stream and go right for the heart. So, with that, I learned that when this situation would occur, it was urgent that I prevent any opportunity for infection, and get the tooth dealt with right away. Unfortunately, dental bills are expensive enough when you do not have dental insurance, so really anything more than a cleaning or cavity being filled was going to be out of my price range. The recommendation by the dentist, was a procedure called a “crown,” simply a replica replacement of the tooth. This option however was way out of my budget. The only other certain choice, was to pull the tooth, which I did not want to happen. After a lengthy discussion, my dentist had one more thought. She offered no guarantee that it would even work, let alone last. But she was willing to give it a try, if I was willing to allow it. She would restore the tooth, damaged probably up to 85% using filling material. The only remnant left of the original tooth, would be the outer wall of enamel, and the inside wall of enamel. Her hopes would be that it would last at minimum, maybe two or three years.

To the surprise of my dentist with each subsequent visit, the tooth still held for almost fifteen years. That’s right, this tooth finally decided it could not last any longer, the inside wall of enamel had broken off from the filling, yesterday.

Having already had the doomsday conversation with my dentist about this dreadful day, I already knew there would be only one option available, extraction, pulling what was left of the tooth. With my flight leaving tomorrow, and several factors to consider, a rather important one of being on blood thinners, and needing time to stop taking the blood thinner and needing the tooth pulled, I had only a small window to get this done, this morning.

As I said, this is not the first time that I am dealing with a tooth having to come out. This is actually my fifth tooth, fortunately, all unseen to anyone not going spellunking (cave exploring) directly into my mouth. More importantly, because of my complicated health history, this type of procedure needed to be done by someone with knowledge and experience of radiation and chemotherapy damage, or, be willing to to listen to the information I had for them about my health.

The above three photos are from a file on potential late side effects for various treatments as compiled by oncologists of the Childrens Oncology Group, who created these Survivorship Guidelines. This document is nearly 300 pages long, so all I needed to do, was pull the pages that pertained to my current crisis and bring them with me. I did this only for the first visit. He knew what to do with me every other time this happened.

But there was one more step in the procedure he needs to perform while doing an extraction on me, and it is vital for my jaw to heal. Because radiation has caused the damage that it has, the jaw was likely to have difficulty healing. For many, hyperbaric treatments may be prescribed to increase oxygen to enhance healing. That is a problem for some cancer survivors, like me. Having received the drug Bleomycin with my chemo, I cannot have hyperbaric treatments, due to something called “bleotoxicity,” a different discussion on a separate post. The surgeon explained a procedure available called “PRP”, protein rich plasma being injected into the empty space where the tooth once was, prior to closing up the hole. Blood is drawn, and spun in a centrifuge, leaving the plasma. I have now gone through this several times, all successful, and with no complications in healing. An antibiotic mouthwash for the next two weeks, and I will be good to go.

I knew what had to be done, that it could be done, and I had no time for anything else. There was one problem, the surgeon. Dentists do not like pulling teeth if they do not have to for multiple reasons. But he is a surgeon, not a dentist. Realizing I have lost a number of teeth (common for us long term survivors), he felt this was one time, I should consider fixing the tooth, with a crown. If I do say so, he offered multiple risks to dissuade my decision . I explained the history of this tooth to him, and that my dentist said, the tooth would not be fixable once the filling no longer held. With the Novacaine working, the surgeon went to work. In the end, everything went as expected with a final comment from the good doctor. “In hindsight, this was the right call. The tooth just crumbled with each attempt to extract it. A crown would not have been possible.” Had I listened to him, I would be stuck with this until I returned home.

And so, I packed before my appointment, all I needed to do, was chill the rest of today, then head to the airport tomorrow. The bleeding has stopped and the pain is lessening, and I can look forward to a wonderful weekend with my daughters. My diet will not be as it normally would be, unable to chew anything hard or chewy so I do not risk the stitches. But all the better excuse to have more ice cream. Did I just end this post that way?