Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Adoption”

03 Dec 2023

Doing The Right Thing


There are things that guide us as parents. We want to give our children better lives than what we had. We hope that by the time they graduate from high school, we have done all we can to prepare them for the adult world ahead of them. There should be no regrets for what was done or not done.

My daughters have plenty of memories of playtime and travel with me. But they also know that I was one of two key figures influencing them as they grew up. Our conversations with each other today are less about homework assignments or the latest Disney movie, now concerned with majors and minors in college.

In recent conversations however, I found myself surprised by a couple of thoughts from my younger daughter during a recent phone call.

“Do you think I was too strict with you and your sister?” I can admit to being a bit of a “helicopter” parent, even to the point where my daughter would lecture me, “you need to let us fail some times, otherwise we will never learn how to get back up.” Her response to my question really took me by surprise, as I was naive to even wonder how she would know of such behavior, “no, because you never hit us.”

“Never hit?” Of course I never hit my daughters. This really shocked me to hear coming from my daughter. I could not help but wonder how she equated being “spanked” or slapped, with being strict. Clearly she had heard stories from friends who unfortunately may have been treated that way. But my daughter was relating strictness with delinquent behavior, something my daughters really had no issue with.

As I tried to convince my daughter how I felt that I had indeed been strict with she and her sister, with what I felt was a fairly convincing list: completing homework, eating, bath time, school attendance, behavior in public, yes, I thought I was fairly strict. Her response, “that is just what a parent is expected to do.”

As a child, I was never punished physically. And to be honest, I never really understood the concept, of trying to correct a bad action, with one of violence (spanking or slapping is violence), teaching that the only way to correct a bad behavior is with brutality. I was not a perfect kid by any means, but I never did anything, I think anyway, that warranted that level of punishment. Therefore, I never treated my daughters that way.

During Thanksgiving break from college, my daughter texted me, “how come you didn’t force us to do anything like a sport or activity?” Much like the “strictness” situation, I struggled where this would even have come from. She explained that she had been watching one of the pro football games (actually forced to), and she equated that to get to the level of a professional football player, it required a level of commitment from the parents to make sure that the goal could be reached, and all the rewards that would come with it.

So I started with the basic. “I didn’t and won’t force you or your sister to do anything.” While I can appreciate the efforts and commitments by my friends with their children to find something of interest to strive for, in hopes of some level of professional achievement, I was always taught that those who reach that level, are so lucky because the odds are so difficult. Take football, out of the couple hundred of players drafted from the college level, how many thousands will not have been given that chance? What else do they have planned for their future?

So I explained to my daughter, that I had no intention of raising she and her sister with any expectation of a professional athlete or entertainer, for the hopes of living vicariously through them. All I wanted for each of them, was to find something of interest to them. I wanted them to find out for themselves what they liked or wanted to do, not what I wanted for them. All they were expected to do, was to give enough of an effort and if necessary, a commitment to make their decision, and if possible, without impact others (such as a team or group function). And with that I would support them all the way.

The first go round we had with finding anything that my older daughter might have been interested in, was dance. She was actually a natural at it. And that was a problem. She did not want to wait her turn during practicing. We tried this for several weeks before finally deciding dance would not be the way to go.

Following a friend’s birthday party, both had expressed interest in karate. Both picked it up fairly quickly, with their own “persona” of intensity. While this went on for a couple of years, it was not necessarily going to lead them anywhere and eventually came to an end. Then, each went their own way.

My younger daughter showed an interest in music attempting various instruments from violin, flute, guitar, and piano, but none, able to earn her commitment. My older daughter meanwhile chose to go the vocal path with choral music. Still not grabbing 100% of her attention or interest.

Then it finally happened, at least for my older daughter.

One day, I noticed her doodling on a game tablet piece of paper. She was maybe eleven at the time. And she did this all the time. In less than five minutes, she could have drawn a full character, usually styled in “manga.” Eventually, she found an avenue for this talent through school, and today is studying at one of the best schools for art.

My younger daughter, is still trying to find something to sink her teeth into that will keep her interest. She likes a challenge, but not the impossible. She does not care for ease as much as she likes being busy. Really I believe her to be on the cusp of what she will want to be and do.

The thing is, their directions came or will come by their hand. My role was and still is to encourage them, and make sure I do all that I can to make sure they have the tools and education they need for success.

As I get to the end of this post, I do remember something that I did force my daughters to do while growing up. I made a promise when they were baptized to follow through on the sacraments of their baptism (communion, confirmation, etc.). They had completed everything except for confirmation, and then their mother and I divorced. As I was the driving factor in this process, and not the custodial parent, it looked like the final part would not happen. Through creativity however, during a Summer visit, I found a pastor in our faith, willing to do a “speed” confirmation process, and they were confirmed. I explained to them, whatever their direction in life for them and its relation to religion was up to them. I wanted to make sure that everything was done for them in religion, should any requirements in their future come up, they can say that they completed everything.

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

A Thanksgiving Wish


There is a difference to being “thankful” on Thanksgiving, and celebrating Thanksgiving. Many will sit around their dining tables and share things that they are thankful for. Thanks to the NFL, we have gone from one football game on Thanksgiving Day to three. My Seahawks will be playing their rival in one of the games.

My view on this holiday, and the entire holiday season in fact, through New Year’s Day, has always been difficult, as it is for many. I was diagnosed with cancer, Hodgkin’s Lymphoma, just the week before Thanksgiving thirty-five years ago. Later on in my life, I would work every Thanksgiving and Christmas. I really grew to resent this holiday season.

I remember my childhood holiday season quite well. As a teenager, I would attend our high school Thanksgiving Day game, getting home just in time for my Grandmother’s Thanksgiving dinner which included two of my favorite things, stuffing and more stuffing. Stuffing is mentioned twice because she made two different HOME MADE kinds. Both were a bread based recipe, but the second recipe, actually left over, was stuffed inside the turkey as it cooked. Some may cringe because of eating something that had been originally stuffed in raw meat. But just like my childhood, drinking out of a garden hose, we survived.

When my grandmother passed, I knew that would be the end of the “traditional” holidays for me, at least as far as dinners. I would hope some day, to have children of my own, and then make my own traditions. As I said previously, that got derailed by cancer. But when my daughters came along, I really wanted to make a positive change toward the holidays.

The sadness and grief that I had all those years since my diagnosis, got put on the back burner, as I tried to make each holiday special for my daughters. But as I mentioned, I spent all of my holidays, working. Exhausted, I gave them whatever energy and attention I had left, once I got home. Soon resentment would build.

And then, I would file for my second divorce, which meant holidays would definitely be different. Having a high conflict divorce, I made a conscious decision, knowing that holidays would be a major issue between their mother and I, giving their mother every holiday, every year. Holidays meant nothing to me. All I wanted was time with my daughters. This would at least, or should have, eliminated one argument between us. Besides, I would be working anyway, and the holidays still continued to mean nothing.

That is the way it has been for a long time now. I don’t hang my head about it. It is just the way that it is. I am used to it. But there are so many that I know, that will spend their first holiday having gone through tragedy or sorrow, with the loss of a loved one, or someone struggling for life in the hospital.

My mother still struggles with the loss of my sister from Covid two years ago. Thanksgiving was a holiday that they always spent together. This year I had too many friends, lose a spouse or parent, or sibling. Several of my fellow Hodgkin’s survivors are currently in the hospital, some, fighting for their lives, as their families struggle with their emotions.

The holiday season is indeed difficult for many. But that is why I said, there is a difference between being thankful, and celebrating. And I do not necessarily want to be just thankful on this one day, but every day. I am thankful for each and every person in my life who makes each day I get to enjoy, another to remember.

May you all have a safe and Happy Thanksgiving. Go Seahawks!

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

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