Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “April, 2023”

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.

15 Years…This Crept Up On Me Real Quick

If my story ended when I mention that I am a 33-year survivor of cancer, Hodgkin’s Lymphoma, that would be enough of a conversation about me, an impressive fact by itself, to live in my fourth decade after cancer. When I started that journey, I knew of only one other cancer survivor who had beaten it, albeit only by a few years before me, my grandmother.

But if you have followed “Paul’s Heart” long enough, you know I am about anniversaries and milestones. And boy do I have a lot of them.

If a conversation with me only talked about the fact that I had to have open heart surgery fifteen years ago, no mention of anything else, again, it would probably involve amazement, and shock at the age when it happened, forty-two years old. Unlike my cancer survivorship, I did not know anyone personally who had gone through this surgery.

This time of year hits me very differently than all of the others because this anniversary is what I call a “dark” anniversary. And this year, it seems to be hitting me a lot harder than I am prepared for.

Once a patient reaches remission, and in my case, as long as I have, your really do not expect to hear anything more about “cancer,” or at least the cancer originally dealt with. In my case, so far, that has been my situation. Sadly, many of my fellow long term Hodgkin’s survivors have been diagnosed with a secondary cancer, or even multiple cancers. In full disclosure, and I know I have shared this info before, back when I was treated, I was warned of the potential for a secondary cancer or maybe some “blip” pertaining to my heart. But the truth was, there were no long term studies done of the potential late side effects that could and would develop. Medicine would soon learn, through us survivors, there was a lot more to long term survivors of cancer, than just reaching remission.

As to how I ended up writing this post, please refer to the page “CABBAGE – Not Just A Green Leafy Vegetable,” which tells the beginning of my journey as a heart patient. It was at that time, that I began to learn, there was a lot more things that needed to be followed up on in my survivorship. And honestly, it answered a lot of questions as to why I felt certain ways, and not always good. But because of my age and conditioning, my complaints and symptoms just did not match my demographic. Again, the plethora of issues I have faced are well documented in “Paul’s Heart.” To be clear, the situations between all of us long term survivors are different, though we do share some similarities.

Fifteen years ago, I was told I was about to die. Shockingly, this would not be the first time I would hear this sentence, and it does not get easier hearing it again and again. My “widow maker” blockage, was caught on a hunch, only because I got tired of the way I felt over the prior four months of symptoms and ignored (I am not a complainer), but because my primary care doctor interceded on my behalf, getting me an appointment to have a particular test done sooner than if I had tried to schedule it on my own, not normally done on someone my age at the time. If either of us had not done our part, I was going to die. As my cardiologist put it, “not a question of if, but when.” So, as I call it, a “dark” anniversary, one of seven I have, this is one of my top three.

The picture shown, occurred a week later, upon arrival home from the hospital. My daughters, aged three and five at the time, were glad to have me home. Behind my younger daughter’s head, a heart-shaped pillow that I used normally to stabilize my chest area, if I had to sneeze or cough. But it also served as a barrier for comfort for my daughters to give me their healing love.

The procedure itself, while quite common, bypass surgery, is a bit more complicated when it comes to patients who have been exposed to radiation and chemotherapies. There is all kinds of internal issues such as scarring, calcifications, hardenings and more, that complicate not just the actual procedure, but the recovery and healing process as well. A long term survivor recovering from this surgery, is actually more difficult than the recovery from the cancer and treatments it was caused by.

It is hard for me to believe it has been fifteen years already. It is not a case of “time flying when you are having fun.” Time has definitely flown though, for sure. With the discovery of my heart blockage, and its cause, soon would reveal many other issues that would require interventions, including two more heart surgeries, and a surgery on one of my carotids, all related to my treatment past. Those surgeries all occurred in the last four years. On top of that, during these fifteen years, I lost my father to lung cancer, went through divorce, lost my job and the health coverage that covered me being able to see the doctors that I needed to be seen by. And this was all without the concerns for what a Covid infection had the potential to do to me if infected.

These fifteen years have definitely flown by and the reality is this. The surgeries that I have gone through are not permanent, they all have limited lifetime warranties. How long? It really depends on who you ask, but can range between 10 to 15 years. Having the surgery done, you need to be followed up, at least annually. And in cases like mine, it is not just for the patency of the bypass, but because the effects from my treatments also impact how long these repairs last. The other three repairs I had done, also have their time limits.

Now, if I did not have this Hodgkin’s treatment history, I would likely become a candidate for what actually needs to be done, a heart transplant. Just as my fellow survivors and I have waited for technology and medicine to catch up with the procedures we are now eligible for, the heart transplant is the one thing, none of us seem eligible for because of all the potential complications. I know of only one who had the closest of chances, only to pass away following complications during pre-op procedures.

At last look, my bypass is still holding up, well beyond the 10 year mark, but testing shows as of last year, it will loom in my future again. I do what I can to slow the process down from simple walks to limiting stress (something not easy to do during a divorce).

There is one factor in my survivorship, all-encompassing that drives me, and I believe protects me. And they are pictured with me.

I went from dying to getting to experience so much time with my daughters, that I otherwise would not have had. They are my world, my driving force, and there is just so much I want to experience with them yet. I do not have a say with my body and what it does, but I do know that my will and fight is as strong as it has ever been, definitely not to be underestimated. I have reached so many milestones since April of 2008. Their biggest events in life are yet to come, and I want to witness them.

My daughters were not around when I went through my cancer battle. And they were too young when I had my bypass. But they are both at the age now, where they understand my health is not the best and the issues I deal with are quite serious. They both have friends that have lost a parent from a health issue. I know many families of survivors who have endured losses at the passing of their parent from one of our issues. A parent always does what they can to protect their children from that kind of hurt, and I give all I can to never let my daughters feel that loss.

I know of other Hodgkin’s survivors who are in the 40’s and 50’s of years of survivorship. I hope to be included in those rare groups some day. But for now, I take my survivorship, just as I did my original cancer fight, one day at a time. I know my potential fate, but do not live in fear of it. I live in spite of it. I go to bed each night, with the plans of what I have in store for the next day. And that is how I have lived these last fifteen years, and hope to make another fifteen.

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