Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Recreation”

17 Nov 2023

35 Years Ago – Where It All Began


November 17th, 1988. I recognize many anniversaries, this is one that I call a “dark” anniversary. In fact, it is one of my top 2 darkest anniversaries. Though the weeks before, doctors had suspected, while I fought and denied their opinions, the week before Thanksgiving, I was officially diagnosed with Hodgkin’s Disease, now referred to as “lymphoma.” With all due respect to Willy Shakespeare, and “a rose by any other name is still a rose,” cancer is still cancer whether you call it a disease or lymphoma, lipstick on a pig, is still a pig, just with lipstick.

As I completed and proofread my first ever solo project, a book titled, “Paul’s Heart – Life As A Dad And A 35-Year Cancer Survivor” (available on Amazon December 19, 2023), the details of this particular time period, I found were as clear today as they were thirty-five years ago. Pretty amazing, considering just last night I got home from the grocery store, went inside the house, only to be told I left the groceries in the trunk of my car. But that is a post for another day.

Thirty-five years is a lot to remember. But the most amazing thing about surviving Hodgkin’s Lymphoma all these years, is remembering how it was handled back then, and seeing progress towards better diagnostics and safer treatments and care today.

I know many other survivors, all over the world, who are “older” than me. “Older” is in quotes, because it does not necessarily refer to chronological age, but years in survivorship. Imagine, if you think thirty-five years is a lot, I personally know many survivors who are forty and over fifty years out in remission! And not just in the United States, but around the world!

While all the details are in the book, here is the short version where I came from back in 1988. Again, keeping in mind, the things that were done to me, were newer methods compared to those who were treated before me.

The diagnostic methods, and again, I won’t bog you down with the actual descriptions of each, just know that these things that were done to me, were invasive, extreme, painful, and some, now considered obsolete.

  • the original biopsy
  • x-rays and CT scans
  • lymphangiogram (a procedure to light up the lymph system, involving surgery to both feet)
  • laparotomy (spleen removal and abdominal lymph node biopsies, liver biopsy)
  • bone marrow biopsy

Today the standard used in diagnosis and staging of Hodgkin’s Lymphoma is the PET scan, positron emission topography. I have no idea what this even is, so I won’t try to explain it. All I know is that it is much easier than what I was put through, definitely more efficient and with Hodgkin’s chances of remission dependent on time, the PET scan definitely saves time.

Of, course, then there are the treatments. It is worth repeating, that those treated before me, were treated with much more toxic chemicals and higher doses of radiation. In reality, my treatments were toxic and harsh enough.

  • high dose radiation, 4000 rads (or centigrey) – if you are unfamiliar with how bad this is, simply ask a radiation tech or someone who works in the nuclear field.
  • chemotherapy cocktail consisting of chemicals used in chemical warfare to name a few.

This combined treatment plan is what has given me thirty-three years, Hodgkin’s free. Today, radiation is more targeted, lower amounts used with what is called proton radiation. Again, this is out of my lane and all too sciency and I would probably lose myself in the weeds explaining it. Chemotherapy has also changed dramatically, having now eliminated some of the drugs given to me, and adjusting the remaining drugs to more tolerable and safer amounts. As always, there are clinical trials constantly being studied for something better and safer.

One thing that has not changed over the decades, conversation from the oncologist, stating the one thing every cancer patient wants to hear, “five year survival rate.” We take this literally as all we have to do, is make it to five years remission, and we are good to go, forever. And if you did your math, for me, that was twenty-eight years ago, and I am still here. So why do I spend so much time writing and advocating for Hodgkin’s patients and survivors? Because in spite of better diagnostics and treatments, and continued high remission rates, there is one area that has not improved hardly at all, and that pertains to quality of “survivorship.”

Back in the early days, medicine knew that it was likely treatments had a decent chance of killing their patients because it was so toxic. But with the risk of dying from the cancer itself, you still had to try. And if you got through your treatments, “hurray!” It was more about the celebration of getting through the treatments, than the remission itself. However, if you were able to get to that five year remission mark, which coincidentally is all that science had studied as far as side effects, short term or long term, you were left on your own. And what cancer patient does not want to put their cancer past behind them? Just walk away from their oncologist and never utter another word about cancer.

There is a huge difference in telling a ten-year old and a seventy-six year old about a “five-year survival rate.” A senior is not going to be all obsessed about living a natural long life at that age as would a teenager or young adult. Which means only one thing, the younger you are, there is a very good chance to develop what is referred to as “late term side effects” or late developing side effects. The problem, these late effects were never studied or researched. In fact, as time would go on, even in my time, health problems would occur, that did not make sense for someone a certain age, and no explanation why. In fact, until the internet came along, is only when “word of mouth” came along, and survivors started sharing similar stories, and correlations made sense. And then some of us would actually be fortunate enough, to find a doctor who actually had been studying these issues, not common in modern medicine.

This is how “Paul’s Heart” came to be. With more than a dozen diagnosis of late effects, all tied to my cancer treatments, I learned of the right people, fellow survivors, and found the right medical care to help me reach thirty-three years of survivorship. So, all is good right? Not really.

Research documented in JAMA, states that survivors of childhood cancer, such as Hodgkin’s, are 95% likely to develop a “significant health problem” by the age of forty-five. Now again, I want to state, cancer patients to this day, are still being told the “five year cure rate,” and then being left on their own to decide their care. So researchers are aware of this need to follow up cancer survivors passed five years, but why aren’t doctors doing it? And why, when the correlation to cancer treatments for a particular issue, do survivors all too often hear denial of such correlation from their doctors when the patient brings the possibility to their attention? Why is this important surveillance need not being passed on and mandated to the doctors from those who researched it and is even recognized by the NIH (National Institute Of Health)?

A common discussion that takes place among my fellow survivors comes up every now and then, is how we are told how our bodies actually are older than chronologically dated. The NCI (National Cancer Institute) funded a large study of childhood cancer survivors treated in the last quarter of the last century. They found cognitive issues as well as an artificial increase in aging, making the bodies of long term cancer survivors appear 10, 20, or thirty years older than what actually are. Combine that with the progressive damaging side effects from our treatments, and our mortality is shortened quite a bit. Again, the NCI is a major institution in medicine and they are aware of this. Why are doctors not treating survivors appropriately with this knowledge that is available? Why are cancer patients not given any follow up plan, for the rest of their lives, after that last drop of chemotherapy has entered their veins? After thirty-three years, why am I still asking that question? After fifty years, my fellow survivors want to know, why aren’t they able to get the help medicine knows is needed and why are newer survivors just “kicked to the curb?” Fellow survivors involved in various social media pages are well aware of this, why aren’t all doctors?

The American Cancer Society barely recognizes any other cancers than the big one other than honorable mentions. And they certainly do not focus on cancer survivorship, again, because all the focus is on five years. What about after five years?

The Leukemia & Lymphoma Society, which actually has the word “lymphoma” in its name, while recently has posted information on survivorship on its website, albeit somewhat difficult to find, I feel does not address the issue of long term survivorship and the various health issues faced by survivors frequently enough.

If you recall in the beginning, I talked about “progress.” Well, sometimes that progress has to come from within. I mentioned the value of communications among long term survivors across social media. Several years ago, an organization was started, and founded, all by Hodgkin’s Lymphoma survivors. It is called, Hodgkin’s International.

Home

Here is their mission stated on their cover page, “Hodgkin’s International is a non-profit (501c3) organization dedicated to improving the quality of life for Hodgkin Lymphoma survivors. Our goal is to connect survivors with one another and to provide them with essential information about the Late Effects they may face as a result of earlier treatments. We also seek to promote education and medical research in the area of survivorship, foster a better understanding of the particular needs of long term survivors, and to advocate for the interests of Hodgkin Lymphoma survivors around the world.”

On HI’s website, survivors and patients of Hodgkin’s Lymphoma, at any stage, can find personal stories, valuable and certified medical resources of information necessary to treatments and survivorship including medical concerns to look out for based on treatments, news and events, and even offer a monthly newsletter usually with an announcement to a monthly video conference with a variety of topics. To put it bluntly, this organization has finally given the opportunity and support for others not just to make sense of the things their bodies are experiencing long after treatment, but more importantly to let them know, they, we, are not alone.

There is still so much more that needs to be, and can be done. I still would like to see in my lifetime, a completely safe treatment for Hodgkin’s Lymphoma. I would still like to see a mandated follow up plan, listing the potential side effects (as they do on vaccine warnings), establish a communication network between all the doctors involved in the care of the patient, led by a primary care physician. Not to be forgotten, mental health also takes a beating in survivorship, and I usually commit a post to that alone. At least Hodgkin’s International is leading the way to a better quality of life for those of us in the Hodgkin’s world of survivorship.

Don’t get me wrong. While I dread this time of year, every year because of the flashbacks I still have, I am forever grateful to all who got me to Novermber 17th, 2023 from the beginning to today. I am forever grateful that I have had the chance to share so many memories with my daughters.

Many will say that they do not let Hodgkin’s define them, and I do concur. But surviving Hodgkin’s has made me the advocate for others that I am today.

Posted in Adoption, Cancer, Education, Family and Friends, Inspired By..., Politics, Recreation, Side Effects, The Heart | Leave a comment
07 Nov 2023

Brakes On A Rite Of Passage


It is a rite of passage. It is also one of a parent’s biggest fears. A teenager in the family reaches the age, to be eligible to apply for their learner’s permit, and eventually earn their driver’s license. I earned my license by the time I turned 16 years of age. So, it should have only been natural to expect my daughters to have theirs around that same age. But that is not the way the plan worked out. In fact, unfortunately for them, they are not likely to see a license until their early twenties. On one hand, yes, it sucks. On another hand, it is safer for them. On yet another hand, it makes great money sense. But just as apparently having three hands does not make sense, when you consider the safety and the money concerns, it actually makes common sense.

First there is the motive for getting a driver’s license… freedom. A teenager will finally have the freedom to go pretty much where ever and when ever they choose. The downside? Parents expecting quid pro quo. “You want the car, you need to run here and do this for me.” The teenager soon learns they have been played into a role of errand runner. I personally did not bite on that as a teen driver. I chose to walk to school (4 miles, yes up hills and down hills, in the winter in 2 feet of snow…literally) for two reasons. One, parking was a nightmare living in the city. But the other reason, I needed to drive my kid sister with me. This could not have been any more inconvenient as it interfered with any after school plans.

But before long, I found out driving was also expensive. Gas was pricing out around $1.25 per gallon. There was also car insurance to pay, and being a male teen driver meant I would pay a lot more due to “risk” factors. And then, car maintenance was added to my expenses. This of course meant I needed a job, something that would give me at least enough to cover the car expenses, which sucked because then I would need to work more, if I wanted to do anything with the car. But working more, meant I would not be available to do the things I was trying to do with the car. A vicious cycle.

For forty-two years, I have been a very good driver, safe. I have not been responsible for one traffic accident. I have been in two accidents, neither my fault, and both leaving an impression on me, how bad things could have been. I have had many friends in car accidents, and my first ex wife was nearly killed in a head-on car collision. So there was a lot to think about as my daughters approached their fifteenth birthdays.

There was one more complication for my daughters, no fault of their own. Their mother and I divorced by the time they were eligible to drive, adding two new drivers was going to be a huge financial burden on both of us, really neither of us could afford. Sure, there were fears about accidents which all parents go through, but for me it was simple, can we afford it?

When faced with a problem, I try to be rational, no emotions. I want to think of all the factors necessary to make the right decision, not necessarily fair.

Having established that parentally, financially it was not possible, that meant that my daughters would have to foot the finances of operating a car. That meant them getting a job, as mentioned above. But here is the thing. As a parent, as opposed to when I was an unguided teenager, I felt school was more important, which meant having time for homework and studying, than working at a job. Sure, there were social and skill building opportunities with a job, but any work would only be allowed on the weekends, not on school nights. Hard to operate a car, working only a couple days a week. And at that point, you are working only for car opportunities, and nothing else.

Looking at the expenses of the car, of course, buying a car, most likely a used one, meant there would likely be frequent trips to the garage for repair, along with a car payment, gas, and of course insurance. Financially this was just not possible. That aside, how much sense did it really make after all? To drive a car for two years, then head off to college, where they would not be able to drive as many colleges do not allow driving in the first year, and depending where attending colleges, driving is discouraged for many reasons, especially parking convenience.

While I cannot guess the expense of a used car payment, or how much gas would be consumed, let’s just look at paying car insurance for say, just the period of time between graduation, and the first two years of college. It is probably a good guess that the average cost would total around $2500 a year, just to be able to drive the few weeks during breaks. Now I do not know about you, but I know a lot more important things I could do with $2500 than just have that temporary convenience.

With ridesharing, comes an option that gave my daughters two types of opportunities. The first, if either of their parents were not available to drive, they could simply call for an Uber. Of course, being in a big city college, they will learn to take public transportation. Both of these are cheaper options than car ownership and licensing. But being young consumers, this also gives my daughters an opportunity to learn financial responsibility and living within their means, while they build up credit as young adults. Having a car in the big city, they would quickly learn about parking fees, and likely driving citations, added to the other financial things that come with a license and car ownership.

Yes, I am a parental buzzkill, seemingly having deprived my daughters the opportunity to drive. While safety is always a concern, even well into their adulthood, for me, it was much more important for them to learn financial responsibility and that what seems like an inconvenience, actually bought time for something better.

Posted in Adoption, Education, Family and Friends, Inspired By..., Recreation | Leave a comment
12 Oct 2023

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.

Posted in Cancer, Education, Family and Friends, Inspired By..., Recreation, Side Effects, The Heart | Leave a comment

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