Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Education”

A Child’s Grief


Sad news came less than a week ago. A close friend of mine, more like a brother to me, passed away. He was sixty-three years old. As the picture above, from over fifteen years ago suggests, he was clearly too young. He had been diagnosed with ALS, Lou Gehrig’s Disease earlier in the year, which progressed rapidly. It is difficult to feel anything less than relief for someone who’s fight against ALS comes to an end, because the progression and results of the disease are just so cruel. Nonetheless, all who knew him, and care about his loved ones, are devastated by the loss.

This is actually the fourth time in less than twelve years that I have lost someone close to me from ALS, and the second time for my daughters. They lost their Uncle Mike, my brother-in-law back in 2012 to ALS. The two others that had passed away were friends, a co-worker, and a school board campaign running mate. Three out of the four, all had young children or barely adult age, when their fathers passed away.

All of these men left wives behind, again, three of them to not only grieve the loss of their soul mates and best friends, but also to provide support for their young, grieving children. My brother-in-law’s daughter was in her mid teens, my campaign running mates children were not even teenagers, and the small children pictured above are now in their early twenties.

For me personally, I had not experienced the loss of a parent until nine years ago with the passing of my father from lung cancer. I was in my later forties at the time. I know the loss that I still carry today following our unique history with each other, with me wishing I could have had more time to make up for time lost in my childhood.

My daughters do not know this level of grief. However, both of them do have several friends throughout their childhood who have experienced a parent’s death, whether suddenly or following an illness. My children have been taught empathy and always gave that whenever any circumstance came up that was hard for one of their friends. And as I said, their Uncle Mike passed away before they were ten, so they do not recall how difficult it had been for him in his fight against ALS.

But for Chris, there is a special bond with my one daughter, though both of my daughters have always been treated equally as family by he and his wife. My older daughter had been adopted together with their younger daughter, as we travelled together. And I made sure that my children stayed in touch with them throughout their childhood, through visits and reunions. The picture above is just one memory of many that my daughters are able to remember him during a time that was much happier.

It cannot be helped however, that my mind retreats to a very dark place every time someone in my life passes away, especially when there are young children involved. My health has been a struggle for years, with one health crisis after another, life threatening, two near fatal events. As I dealt with the first one, a “widow maker” heart blockage, that resulted in the statement from my cardiologist, “it wasn’t a question if you were going to die, but when,” referencing the imminent fatal heart attack that could have happened. My main thought used to be at one time, “what would my employer do without me? They need me,” trying to stall or prevent the corrective surgery. Following that emergency bypass surgery, I found out. They carried on without me. And when I recovered, and returned to work, it was business as usual. But clearly, they had done without me.

Reality had set in however, when told that I was that close to death. Work may have been able to get on without me, but my daughters were five and three years old at the time. That is when it sunk in, the pain that they would have had to endure, without me in their lives. Unfortunately, this scenario has played out so many times now, and fortunately my daughters still do not have to deal with that type of loss. And as my friends are now dealing with the loss of her husband, their father, I know my daughters are thinking of all of them, while at the same time realizing how serious their father’s health is, and not to take any time for granted.

I have had many over the years tell me that I am depress them thinking about death all of the time. That I “could be killed tomorrow crossing the street.” I am sure you have heard that expression. And while that possibility may be true, there is one main difference. A person that says that, does not have someone “pushing them into the path of the car,” making reference to the conditions of my body, being so compromised from the cancer treatments I went through years ago.

Studies have shown, survivors of Hodgkin’s Lymphoma treated decades ago, like me, have bodies that are internally artificially accelerated in age, by twenty to thirty years. To put that into perspective, I am sure you have heard comments like “smoking takes away so many years” or “eating a diet high in fat decreases life expectancy”. My cancer survival is the same way.

The fate of my fellow survivors occurs one in three ways. The first, those who have no idea what is causing their unusual health issues, because they were never told of their likely late side effects. The second, those who faced one corrective surgery after another, and then one too many, impossible to overcome complications. And the third, those whose bodies simply had enough. This just recently happened with one of my fellow survivors I just wrote about. Though she dealt with several issues, she had not felt anything imminent, and proceeded on a vacation, when she suddenly passed away. I am not in the first category, and so far, I have gotten through all of my surgical procedures and health events. Which can only leave me wondering, if I might be in that third possibility.

So that brings me back to my friend, and those others who passed from ALS. There was a time, I honestly thought I would have outlived them. And they would then be comforting my daughters.

Getting back to the comment about me “thinking about death all the time.” No, I don’t. I think about living, all the time. In order to do that, I need to do two things. The first, I need to listen to my doctors treating all of these issues, and follow their recommendations. The second thing, I have goals driving me, and of course they are associated with my daughters. It has not been easy getting to each, but I have done so, and there are so many more that I want to be around for. So no, I don’t think about death all of the time. I think about living. I live for my daughters because I am arrogant to believe that I can prevent them from the hurt of grief, though I know I have no control of my fate. That much is clear.

My heart is heavy not only for my friend’s wife, but for his two daughters. The hurt I have for my father I am sure pales in comparison to what they are feeling this evening, having only such a short time with their father, and so much more to experience in their lives. I wish there were more than just words to help them during this difficult time. But as one comment that I have made to them, there are just so many great memories and stories that I have of my friend, that while his passing was indeed tragic, it will not be the end that dominates our hearts as time goes on, but rather all the good times we shared.

But you will definitely be missed my friend.

Traci


Just like the title of this post is only one word, that is how I would actually be able to describe Traci, with one word, actually several come to mind, survivor, inspirational, role model. Okay, so that last one was two words. But still, Traci was worthy of that description.

Sadly, I did use the word “was” in the past tense. Once again, my world of fellow long term Hodgkin’s survivors, has lost another member of our group. While most of us have a variety of health issues, many quite serious, we know our mortality is likely shortened. And there are two ways that mortality normally comes to an end for us, either complications during a procedure, or the body simply just decides it has had enough. And in that latter part of the statement, it catches us completely off guard when it happens, as it did with Traci’s passing. Just less than two weeks ago, she had posted one of her many posts for pet advocacy and humorous memes. Though as the rest of us, she had her health struggles, there were no signs that anything was imminent. And then the news came. She was gone. Traci was doing what she enjoyed doing, and then her body decided it was time.

Traci was one of the many who actually had more years of survivorship from Hodgkin’s Lymphoma than I do. She was younger than me when she was diagnosed, not even a teenager, yet her survivorship lasted fifteen years longer than mine has. Through her many health issues, her continued strength in survivorship was inspirational to so many. She was never one to give up, but also realized that there was going to be a limit. And that was something that she accepted. Looking back at a conversation that I had with her earlier in the year, that conversation actually came up. How much more can our bodies be expected to take.

As a role model, you would never have suspected all the health issues that she faced. Traci was a fierce animal advocate. Her close friends describe her as genuine, a “straight shooter,” and a true friend, especially for those who had no voice or enough ability to speak theirs. In our world of survivorship, she always provided encouragement, and as I said, provided her life as an example, to make the most of everything while she could. As I scanned through photos for her tribute, along with all the cat photos, there were memories of trips, ball games, music concerts, and so many photos with friends. Traci definitely did all she could, when she could.

Though we have never met, my thoughts turn to her husband. The timing of her passing, completely unforeseen, presented a very complicated situation. But perhaps even harder than that, pictures of Traci and her husband show a couple who truly supported each other, and lived for each other. My loss of a friend, pales in comparison to what I am sure he is feeling.

Traci, to say you will be missed is an understatement.

They Are Just Words


I had been looking so forward to this day. A gauntlet had been laid down by myself, to act, and to act hard. My previous doctor appointment resulted in a stern warning about one of the many health issues I struggle with, as a result of my cancer treatment history, the measurement of my A1C, or the measure of hemoglobin to determine diabetes. By the wonders of medical science, this measures your blood sugars over the prior three months, in other words, don’t even think about just not eating candy and drinking soda a couple days before a blood test. The A1C rats you out. I discovered that several years ago, when my doctor made me aware as I bragged about my low blood sugar test, when she followed up with, “but your A1C…”

For the last several years, my A1C has been on a constant increase. Even with the intervention using a certain prescription, the increase continued. I was diagnosed with a condition called “insulin resistance.” My last doctor appointment, my level reached a new high, and a dangerous high, 9.0. I was on the verge of needing stronger intervention, but was resistant to anything injectable, and a newer medicine that was being recommended, of course, was not an affordable option. Other medicines that were suggested to be considered to lower A1C, worked by suppressing appetite, hence, losing weight, which in theory should lower the A1C. Now I was on to something. Those medicines would have no impact on me, as I have not had an appetite since my heart bypass surgery back in 2008. That meant, I was going to have to do this on my own.

For the last several years, my A1C has been increasing. I already at a low sugar, low carb, low cholesterol, low fat, low taste diet. Over the last nearly two years, I have been consistent with exercise, nothing heart throbbing, but exercise nonetheless. And no success with weight loss of any substance. Three months ago, I committed to near 0 sugar, near 0 carb, near 0 cholesterol, just as much protein as I can take, which is not hard considering my distaste for most vegetables. I finally kicked the soda habit. I quit eating bread and pasta. But I also made a request to my doctor. I have a friend who was taking a 3rd dose of the same medicine for A1C reduction that I was taking (I was only taking 2 doses), and they had experienced weight loss. I was told to “go for it.” With this, I was on a “make or break” mission. If after three months, my A1C had not lowered, regardless of my weight, yes, I was just going to throw my hands up and surrender. I used a personal scale, not for accurate weight, but just to observe any movement. Then came the moment of truth.

At the doctor’s office, following my bloodwork, my first stop was on the scale. Since my April visit, my official weight was 223 pounds. I was now not only below the weight of my bypass in 2008, but below 210 for the first time since early 2005. There was only one thing left to do, two actually. I was there for my cardiology appointment, so I had my usual echo to find out how my bypass (2008), stent (2019), and aortic valve (2021) were doing. There I would find out about my A1C. All three of the heart surgeries were still looking pretty good. Then came the news, my A1C had dropped 1.5 down to 7.5. Still considered high and in the diabetic range, but for the first time in years, the number had decreased. IT WORKED! Of course, my plan is to continue what I have done and has worked, as new numbers will be drawn in three months. Onward I go.

Then my heart said, “hold my beer,” a reference to the meme for when things look bad, but here comes something worse. Another doctor looking over my echo, noticed something that even I had overlooked, obviously too excited by the other results and my lower A1C.

There is another measurement for the heart, called “ejection fraction.” Ejection fraction simply put, is how much blood gets pumped by your heart. It is measured in percentage, but the higher the number is not necessarily a good thing. The best range for EF is between 55% and 70%. I have no knowledge of the higher range, but from what I can tell, 90% or 100% which is normally good on a school exam is good, not so for the heart. So I am going to focus on lower numbers since that is my new issue. But before I do that, I need to introduce another term, “congestive heart failure”, or abbreviated as CHF. That sounds bad, right? It is, but the question is, is it dire?

With CHF, the blood is not being pumped well enough. And up to this point, of all things I have had done to, and discussed about my heart, CHF was not one of them. Well… I had not realized it, but a few years ago, following my stent placement, a new diagnosis was listed. You guessed it, congestive heart failure. You want to talk about a huge pit in the stomach? I thought cancer was a death sentence? CHF definitely is, at least for some, those that have options that is, which I do not, but will get to that in a bit.

When I realized I had been diagnosed with CHF, I expressed in “WTF” to my doctor, who told me that it was not a big deal as my EF was still good, that simply saying that I had CHF was just saying my heart was not perfect or perfectly working as a normal healthy heart. Okay, while having the diagnosis did not feel good, I trusted my doctor was telling me that I was still in decent shape.

Side note, just a reminder, all of my heart issues are attributed to my treatments for Hodgkin’s Lymphoma thirty-five years ago. The radiation damage is progressive, will always progress, never get better. Things that can be fixed, have been fixed. There are others on a “watch and see” basis. A better solution for my heart, would require a heart transplant, which I will never be eligible for, or even if I was, likely would not survive. Now I think you have everything to follow along.

While my A1C had been climbing all these years, it turns out my EF had slowly been declining by one or two points every year. Again, nothing major, and still within the range of working efficiently enough. And just as with my other issues, due to the treatment damage, it really came as no surprise. That is, until this appointment. My EF has plummeted 10 points down to 40% since my echo last year. This is a dramatic drop and needless to say, I am super frustrated, as once again, I felt I had been doing everything right. I got my weight down. I got my A1C down. All my other blood tests looked great. My exercise is consistent. But an EF of 40%, while not horrible, is not great either.

The Cleveland Clinic, the “star” of those of us with irradiated hearts, lists a normal EF range to be between 50-70%, with mildly reduced EF between 41-49%. I am now 40%, putting me in the category of moderately reduced, in the range between 30-40% EF. There is only one other category, severely reduced, which of course is 29% and below. This is when the really bad stuff is likely to happen. So far, I have no symptoms reflecting my lowered EF, or that I have at least noticed before researching and writing this. My appointment with my cardiologist, I did not mention any symptoms anyway, a problem for me since I do not usually notice symptoms until it is too late. So he did not seem concerned by this drop. But my other doctors did raise a concern.

The Cleveland Clinic does list some symptoms, that in retrospect, I can say that I have, just as usual, I have not paid attention to them. Fatigue, I deal with every day, always have, is nothing new. Heart palpitations, have always had them. Shortness of breath has always been a tricky thing for me to keep straight because I also suffer from restricted breathing, another complication from treatments, and it is difficult for me to tell them apart, but there is clearly a difference. Water retention in my abdomen or feet, which in spite of a diuretic, I am unable to overcome. As of late, this diuretic has only been working 25% of the time. Not to mention I take a medicine for my heart, which is known to cause additional fluid retention. But I have had this for years as well, with my EF in the upper 50’s.

There is a new symptom though, that has become noticed, though no explanation or correlation until I started writing this post. Cognitive impact. At the beginning of the month, I wrote a post called “5 Second Paul,” referencing a noticeable change with my short term memory, confusion.

I had received a call from my cardiologist a few days ago. He had heard that I was concerned about this updated issue. He did his best to assure me that everything was good, including with another unresolved issue with my heart, something called a “left bundle branch block,” that occurred following my aortic valve replacement two years ago. That is for a different post.

The problem is, I have personal experience and knowledge with EF problems. And now it becomes a matter of how quickly this issue progresses, as my other issues have progressed over the years, some slow, some rapidly. When these issues have hit the severe stage, there was no mistaking symptoms, and interventions were required. Unfortunately, for me, EF will leave me with little to no options to treat or reverse. Worse, I have seen what happens.

With all that has happened with my heart, three surgeries so far, and more complications, while there are a few possible and temporary solutions, a heart transplant really will be the only option for me. Unfortunately, a heart transplant is not an option for long term Hodgkin’s survivors like me, exposed to the levels of radiation for treatment that we were. The risks of complications from such a surgery, from rejecting to death, is dramatically increased, making us nearly impossible for a candidate for this level of intervention. I am only aware of two other survivors who had even come close to qualifying.

So, just like I have done for other conditions, I wait. I will have my next echo in a year. By then, I expect to have lost more weight. I expect my A1C to lower additionally. And I will continue to exercise. Do all I can do. The next result will likely determine the next phase of my survivorship. It just depends on how quickly.

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