Paul's Heart

Life As A Dad, And A Survivor

The Top Story Today…

Newspapers and newscasts all have top stories followed by lesser significant stories. I am treating this post in similar fashion.

The top story…

My youngest turned 18 years old. When I look back at the hundreds, ummm… likely thousands of photos I have taken not just of her, but of her sister as well, I consider myself blessed to have watched and witness the growth and development from someone so tiny when she was first placed in my arms. Her wit, her personality, her intelligence, and her ability to smell through bullshit, she definitely is my daughter. Every photo I look at, I can remember where, when, and what was happening.

I encouraged her to stay a child as long as she could, and I believe she did just that, with her foot in the door to the next stage of her life, adulthood. Her childhood years behind her, she now heads in to the next phase of her life. I see only good things for her.

Another milestone reached…

It seems as of late, I have been doing a lot of talking about milestones. Back in 2008, when I had my first heart surgery, tied to my cancer survivorship of Hodgkin’s Lymphoma, my doctors and I agreed, I wanted to live. I had a lot to look forward to, and I wanted to be around to see these things, these milestones. I went from a certain fatal event, to seeing each of my daughters turn 18, one having graduated, now completing her first year of college, to my younger daughter now graduating, heading off to college in the Fall, another milestone reached. And it will be a tense three years, dealing with my health issues as I await the next milestone, a college graduation. But for now, I have seen both my daughters turn 18 years of age, something that has never been a guarantee.

A chapter closed…

Also, with my final child turning 18, brings an end to my divorce case. This does not mean an end to me supporting my daughters, emotionally, or financially. But what it does mean, is that the relationship between my daughters and I, will now be, between my daughters and I.

As an adult child of divorce myself, I am still haunted by my parents’ decisions with their divorce. But it was my feelings, that drove me to protect my daughters from being exposed to the hurt I have carried with me my entire life. Most importantly, I feel it played a vital role to make sure, what happened with me, did not happen with them. Granted, I had better means to accomplish this effort, namely in the form of video messaging services, which allowed this non-custodial parent to have nearly daily visual contact with each of my daughters. Of course there was also the drive, never to leave my daughters’ lives.

Through it all, I hope that I was still able to convey to them, that there is good in relationships, and that marriage can be a good thing, but also takes work, respect, and communication. I tried to set examples for them, of how they should want to be treated, all the while, teaching them other life lessons, even if from afar.

And here we are, both my daughters, now going full speed ahead into adulthood. My role as teacher and comforter, turns to advisor and support. Of course, they will also become more familiar with my health issues, as it is likely, they will need to know everything I have gone through.

And finally…

Today was about my daughter. This will not become another “anniversary date” that I recognize. This will always be about her big milestone. The other two things just happened to occur on the same day.

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?

A Memory Impossible To Forget

“He’s so young!”

Those were the last three words I heard before I became unconscious from the anesthesia so that my open heart surgery could begin. Those words were said by one of the many nurses in the operating room, scurrying around making preparations to save my life. As I heard those words spoken, I wanted to answer her back, but just after the word “young” was said, I was out. My life was in the hands, literally of everyone in that room.

Of the many issues that I deal with of my survivorship from Hodgkin’s Lymphoma, my PTSD (post traumatic stress disorder) probably gets the least amount of attention. But when it hits me, I remember every detail, vividly, which amazes people that know me, as I am not known necessarily for my short term memory retention (ask anyone who has seen me stop in the middle of a room, forgetting my intentions).

It was 5:30am when the orderly assisted me onto the gurney that would take me down to the holding area, before entering the operating room. I had not slept at all since I awoke from a catheterization procedure the afternoon before, discovering a fatal level blockage of the left anterior descending artery of my heart, commonly described as a “widow maker.” It is called a “widow maker” because if you suffer a heart attack from this blockage, you most likely will die without immediate intervention. Once all of the buzz of preparations and pre-op testing had been completed, all I could think about the rest of the night, was wanting to see my daughters again. The last we saw each other, I was just supposed to undergo a simple overnight procedure. My daughters were too young to be told what was happening to me, but now there was a legitimate chance I might not survive this surgery.

In the holding area, I was told to remove everything. I was covered with a warm thick blanket. A nurse placed a hair net onto my head. A couple of IV’s were placed into my arms (spoiler alert, when I woke up, there was a lot more tubing than I knew of then coming out of me). I was then rolled into the operating room. It was a huge room, filled with large screen televisions, glass cabinets filled with equipment, and many different types of machines. Of course, there were so many people, all wearing blue scrubs, with gowns, masks, hair bonnets, paper booties, and latex gloves. The activity level was like that of an ant farm or bee hive, everyone having a task needing to be completed before the stars of my procedure entered the operating room.

I was lifted from the gurney onto the operating table by four people. My arms were each being splayed apart (as in a crucifix position), and “secured”. I could see trays being set up with all kinds of equipment from tubing to tools and instruments. To say this was overwhelming is how I should have felt. But between the sedative that I had previously been given, and my thoughts of daughters, I really just resigned myself to just letting everyone do what they had to do. Just then, the only thing between me and everyone else, keeping me warm at the same time, was removed, displaying me in all my birth given glory. This did not even phase me. That blanket was replaced with multiple sheets of surgical covers.

Just then, the anesthesiologist came in and knelt down by my side. “How are you holding up?” I replied, “I’m not panicking, so the stuff you gave me is doing what it needed. Just please, I need to get through this. I want to see my daughters again.” The entire room had grown quiet. Normally when a room does that, someone is likely to spurt out “awkward,” but at that moment is when all realized who was on the operating table.

The surgeon entered the operating room, and called everyone into a “time out.” This was the last thing I participated in during this process. The surgeon ran through a checklist of everything and everyone involved, and then turned to confirm that I was indeed the patient this procedure was for. “Can you give me your name please?” At that particular moment, I actually thought, would anyone else really be lying here in my place volunteering to go through this for me? “Paul Edelman, Jr.” (a necessary distinction as my father had his own heart record). He then continued, “Mr. Edelman is a 42 year old male with a history of Hodgkin’s Lymphoma, who now presents with multiple blockages of the heart including the left anterior descending artery, is about to undergo both a vein harvest for a triple bypass to be performed.” It was really all so overwhelming. At no point in my life did I ever feel my life was as complicated as the moment had just explained. It was asked if anyone had any concerns or questions, even looking at me for anything last minute. Nothing. We seemed all good to go.

The surgeon then turned and walked back into an ante room to finish his preparations. The anesthesiologist also got active, operating the machinery around my head, placing a large plastic mask over my mouth and nose. A comment was made to me that I would begin to start feeling someone light headed and calm as anesthesia was administered through both the mask and IV. I became groggy.

It was then that I heard the nurse, “he’s so young.” What was I going to say in response? “Yes, I am young. And I have two daughters who need their dad. They are counting on all of you to make sure I come home.”

Since I did not get that out before the surgery began, before I was discharged, I made sure that everyone who was involved in that eight hour surgery, and saved my life, knew how thankful I was. I was an unusual case, not just because of my age, but with a health history that was not commonly known, with all kinds of conditions internally, not normal for a healthy body, but destroyed by radiation and chemotherapy treatments. To say they nailed it, even without knowing the special needs of a long term Hodgkin’s survivor, is an understatement.

Today, in my 33rd year of cancer survivorship, I celebrate my 15th year as a cardiac survivor now as well. Most importantly, my daughters still have their Dad, still getting to share the big events in their lives, now graduations and college. And yes, I look forward to so many more.

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