Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “July, 2018”

Married Or Divorced – The Title And Responsibilities Of Dad Do Not Change


Since they came into my life, I have tried to raise my daughters with three different directions in life:  education, humility, and of course, fun.  During the years of separation and divorce, those directions have never changed.  My daughters know that they can count on my consistency through the years.  I have not changed.

My custody time with my daughters vary, and that often determines the kinds of things we do.  If it is a short period, it is more likely to be of the fun variety such as a movie or park, or perhaps visiting a friend.  But during the extended periods of time, that is when more time can be spent, while money is not, learning about life, what is ahead of them, and what I hope for them.

No matter what, my daughters have been able to count on having to do homework with me.  Whether during the school year, of summer break, this has never changed.  What has changed are the methods.  With schools now requiring summer reading, I no longer supply the “transitional” workbooks to prepare them for the next grades.  And what is even more special, watching them help each other.  Which actually becomes critical once Algebra and Calculus comes into play.

But this summer, something was new.  My oldest had informed me that she wanted to get a job.  Another step up the ladder of life (I assume driver’s license will be next), I helped her fill out a few applications, and even took her for her first interview.  Now while she did not get the job, what she got was a huge lesson in her first interview – questions that are asked, get over the nervousness, etc. .

But there are so many activities and opportunities to learn, and you can check your communities, because I am certain that you have them too, and they are usually free.  My daughters love to cook.  A teen class was provided at our library and they learned to prepare and cook a chicken, bake a cake, and make pancakes.  Needless to say, they were anxious to put their skills to the test, and who was I to stop them?

And there are plenty of other things that I try to teach them, opportunities that are not often available, some times about history so that they learn the importance of not repeating certain events, and of course, humility.  That one day, they may not have everything that they once did, or that there are those that have never had.

Years ago, I took my daughters to our Holocaust Museum.  It was a modest sized building, but filled with such tragic history.  They had already been learning about Nazi Germany, so they were able to grasp the severity and horrific events that took place.  The above picture shows a restored boxcar used to transport families to the gas chambers.  While at the cooking class, the boxcar was currently positioned at the library.  There is information inside telling of the history of the Holocaust though clearly not in such detail as the museum, but to actually be able to stand inside, imagine the doors closed, only being able to look through a foot-high window of the box car, not knowing your fate, it was quite chilling.  Later this week, my daughters will actually meet a Holocaust survivor, who was a child back then.  He is giving a lecture on his experience during the Holocaust.

But another thing that we have always enjoyed doing with each other… outreach, helping others.  Whether walking the streets of Philadelphia and seeing a homeless person, or perhaps rescuing a stray pet, my daughters appreciate that there are always going to be others who do not “have” and that it is just a degree of how much or how little.  My daughters and I participated in the second stage of an event here that raises money for food who have difficulty affording food.  The first stage, bowls are molded.  The second stage, the bowls are painted, the stage we participated in.  After they are “fired” the bowls are filled with soup, made by local chefs, and at an event in January, open to the public in one of our parks, people may buy the bowl, filled with soup, and the proceeds go to help the hungry.  The only sad thing is, our bowls look nothing like the finished produce until the are fired, and we really will have no way of finding our bowls.

Around all this, we are having fun doing all of these things, learning, helping, caring.  Watching movies, walks on the beach, playing games, my daughters know one thing, the dad that they had when they were four, is the same dad they have now, only so much more.  And so are they.

Maybe If You Hear It From Others – You Can Start To Understand


Today is a very difficult day for me.  For the second time in two days, I have been informed of yet another long term survivor of Hodgkin’s Lymphoma that I personally knew, has passed away.  The fact that this news happens is not the shocker, because most of us who are aware of our health issues, late effects caused by treatments that saved our lives, either do not make them self known, or if known and treated, and when we think we are good to go, either another issue pops up, or worse.  And no matter who we try to explain our fears, that we cannot just get over it, that our bodies are indeed challenged, and confirmed by medicine, even those close to us, still do not often get it.

But do not take my word for it.  I have a guest today, fellow survivor Danny.  I have known Danny for almost a decade, having met him in Manhattan when I was there for follow ups for my health issues.  Danny was also a patient there at Sloan Kettering as a survivor.  Danny developed his Hodgkin’s while serving in the military for our country.  And as his words will show, living a long life after Hodgkin’s, is not easy.  Just because you cannot “see” with your own eyes, does not make it not real for us.

“Being a Long Term Cancer Survivor is hard. I was diagnosed when I was 20. Yes I am thankful for the life saving treatment that kept me around this long, but at the same time I despise it.

Why?

Turns out the longer you survive the cancer, the more damage the treatment does to your body. So, while I was able to get an education and have a career and achieve some of my dreams, by the time I was 40 my doctor told me I needed to retire or I was going to die!

I have a decent retirement income and complete health care coverage, but many of my fellow Survivors do not. I worked hard as long as my body allowed me to and I was rewarded for it. Many Survivors are relatively young and would like to work, but their bodies will no longer allow them to. This makes life hard on them.

The type of cancer treatment many of us received as late as the 1990’s was very harsh on the body. Recent studies show we have a 30% reduced life expectancy in relation to the general population. I have personally known many who have passed away in their 40’s, 50’s, and 60’s… all caused from complications from cancer treatment they had when they were younger!

The life of a Cancer Survivor is hard. While our peers are out enjoying the fruits of their labor and raising their children or playing with their grandchildren, we are going to the doctor and the funerals of our friends.

Here’s to hope for the future, a cure, better treatment methods and Medicare for All.”

Danny and I share a lot in common besides our Hodgkin’s.  We both share some of the same late effects.  And I want to tell you, I know that it was hard for Danny to write what he did.  He is one of the most optimistic people I know, and he has a very good sense of humor.  And as you can see, he loves the outdoors (I love Washington State by the way).  Which is really what challenges him and how he deals with his late effects.  He is also a parent, which is another reason why we cannot “just get over it.”  We have to be our own advocate because all too often, we end up dealing with a doctor who has no idea what it means to have been dealt with some of the most barbaric treatments for cancer and live to tell about it (our life expectancy was average 5 years – and many of us are 3, 4, 5 , and 6 decades out, which means we lived long enough to develop side effects, something that was not studied beyond those 5 years.  We are the guinea pigs for better and safer treatments, and there is a long way to go.

But we survivors cannot be forgotten either.  We need help.

My tribute to my fellow survivor who passed away will follow.

A Farewell To Fran


I never want to write these tributes.  Rather, I would rather not have to write these tributes.  A cancer survivor endures so much over their “second” lifetime, they should be the ones that get to tell all the beautiful and inspirational things that they have done, since cancer.

Though my friend Fran and I never met in person, we knew each other quite well.  We were what I refer to as “crossovers.”  We met each other on a long term cancer survivor list serve before each of us made the leap to Facebook.  Fran had already had her issues with her late effects, but I had just begun my journey following my heart surgery caused by my radiation and chemotherapy treatments.

It was on Facebook however, that Fran reached so many more people.  Just like the rest of my fellow survivors, we only want to find support, understanding, answers to the many things that still stump the average doctor.  And we find that in those who have gone through similar treatment experiences decades ago.

But when we were not dealing with one of our health issues, we were able to share stories about things we were able to do to enjoy life, and sadly things that we were no longer able to do.  While Fran would mention her former love of karate, she did not dwell on it.  Rather she loved to talk about her daughter.  Over time, she also made decisions to reach out to other survivors, and more importantly seek out medical care professionals who either knew what we deal with, or at least had an open mind to help find answers.

And like so many other survivors who have passed on, Fran was another who often offered support to others, sacrificing her own emotions.  And that is really what makes the “society” of people I know, or as some refer to as “the tribe” special.  It is not often to be able to say “I know what you are going through” or “I know what you are feeling.”  And that is what makes my fellow survivors so special.  Because they get it. And while they may not always find the support they need from those closest, they know that they can find it in our group.

And that was Fran.

The stories and remembrances are posting now, and it is wonderful to see all the others lives that she touched.  And it is also inspirational to hear the many things that she had done, and hoped to do.  Most importantly being able to see her daughter graduate from college.

Though she had hoped to make it through this last struggle, it clearly was too much.  She suffers no more.

Fran, thank you for the words of encouragement that you always gave to me and others.

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