Paul's Heart

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.

An Elephant In The Room

As I am proofreading my book, now finished, I am reflecting on the many things that I wrote about. One of the things that is definitely one of the greatest things that I have witnessed over my four decades of cancer survivorship, is progress; progress in diagnostic methods, progress in treatment options, and progress in following up patients after cancer.

But we still lack an ability to talk about cancer with those closest to us, especially our significant others. Or, when it comes to beginning a relationship, when is the “right time” to bring up that you had cancer? Thirty-five years ago, when I was diagnosed, and beyond, we never heard of people beating cancer. If you heard the word cancer, it was because someone famous had died. And it was even rare to hear of a family member dying from cancer back then, because no one talked about it. There was a stigma of cancer being contagious, which of course was not true. And this was before social media. Poor choice of words, but the only reason cancer was thought to be “contagious,” was the contagion of rumors. Up until the turn of the century, it is likely that many cancer patients were treated as if they were contagious, or at least people thought cancer was contagious.

It was actually a social media post that came across my feed recently that provoked this post. It was written by a young woman, married, with several children. She had been diagnosed with Hodgkin’s Lymphoma recently, and is about to undergo chemotherapy, which cocktail I am unaware and really does not matter for this post. Clearly she was looking for serious answers as she prefaced her question with a reference to “being adults.” She was not looking for cat calls or unsolicited flirting.

She was trying to gather consensus among other patients and survivors, on the risks of intimacy, from kissing to full sexual relations. As I had previously said, sex was the furthest from either my wife’s or my mind. And honestly, I do not recall any level of intimacy such as kissing, again, because of the whole “fear of contagiousness.” All I had been told once my chemo was done, when I asked how soon, we could pursue having children, I had been told to wait a year or two. In all honesty, while I was going through treatments, radiation or chemo, I really was not thinking about sex, although had I been presented with an opportunity, I would have had to have been a gentleman. Alas, the issue never came up. The rest you have to read in the book.

The author of the post ended up getting a variety of answers, and as per her request, reasonable responses. But they ranged from not being told anything, to refraining two to three days, or as many as seven. Any who had been given any kind of warnings, did say it referred to any form of body fluid exchange, which would not only have included kissing or intercourse, but any opportunity of exposure, which could include sweat, or sharing a glass or utensil with food. If there were intercourse, there did need to be a condom used.

The argument was, that the chemo drugs are believed to remain in the blood system for days following the infusion, and thereby could be released through bodily fluids. And this is a possibility. This is a far cry from my younger days when the concern was more towards catching cancer.