Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Education”

21 Jul 2018
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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.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart
09 Jul 2018

Summer Vacation – A Learning Experience


As a kid, who did not love Summer vacation?  But as an adult, I love it so much more.  I have always been the type of person who enjoys watching others’ happiness, more than my own.  And now that I get to witness things as a father, through my daughters’ eyes, yes, I love every chance I get to spend with my daughters.

My daughters love the reality television show, Big Brother.  By default, that means when they visit me during the Summer, I am stuck watching the show with them.  It is unavoidable because I live in a one-room apartment.  A similar situation if you will to the living arrangements on Big Brother, more than a dozen people, trapped in a contained studio house, for over 90 days, with someone being kicked out of the house every week.  Every move is watched.  Every word is heard.  Trapped.

Ok, so our situation is not identical per se, but, the three of us are staying in the same room, for 49 days, but no one is being evicted.  Ok, we get to leave the apartment and do things.  Ok, there is no backstabbing and lying to get favors.  But there is one thing that our situations do have in common, learning about each other.

I have spent most of my cancer survivorship, proving to everyone, that I will be fine.  At the same time, I have spent all of my time, convincing everyone that the many issues I face as a result of my treatments thirty years ago, are very real.  They are not once and done episodes, but a progression of situations, monitored, waiting to have no choice but to be dealt with some day, hopefully before it is too late (read “CABG – Not Just A Green Leafy Vegetable and you will see what I mean).

My daughters were 3 and 5 when my body let me know, that while I may have beaten cancer, it came at a price.  And there would be several more episodes in the upcoming years.  But I have always been of the mindset, to let my kids be kids, let them deal with childish things.  And as I realized how much happier off they were just to know “Daddy was okay,” I used this mentality when it came to family, friends, and co-workers.  By doing so, I did myself a disservice, as well as perhaps other cancer survivors as well.  I figured, if I could keep all the issues hidden that I have to deal with, then I would not have to worry about anyone worrying about me.  The unrealistic part of that is, anytime a crisis would come up, there would be worry.  But then that would be followed up with “get over it already, you are better”, or worse, “just faking it.”

It is ten years now since my daughters saw me hooked up to all kinds of machines, recovering from open heart surgery, and having witnessed many of the other events.  Already during this visit, questions are beginning to come up.  Because of the warmer climate here, many of my scars are exposed, and these lead to questions.  Both daughters were never there when I went through my cancer, though are very proud of me for having made it all these years.  But as they grasp that the fact that many of the things that I deal with health-wise are because of my treatments, they now understand, my body will never get better, only worse.

They know that I have good days, and they have certainly seen my bad days.  They know the issues that I deal with are very real.  But that is not what are visits are about.  Yes, they are learning about me, and I am learning about them.  And I have so much more to teach them.  I take them to visit preserves, complete computer courses that may benefit them in their future, and another first, helped my oldest apply for her first job.  And we still do workbook exercises to prepare them for the new school year, though I have now pared the work down to a specific course that either may have struggled with in school (they each had one).

But there is still so much more for us to do together.  And I cherish every moment I have with them.  And I know that they are enjoying the time with me.  I know that they care about me.  They want to do what they can to keep me around a lot longer, whether it be a better diet, or exercise (we have a nightly walk routine after just 3 days).

They know that in just a few years, our roles may change with each other as I will have to give them responsibilities, as far as things they definitely need to know, and perhaps, prepare for.  They will become my legal guardians and our roles will switch.  If I am faced with the difficult situation of being incapacitated as I have with past events, they will be the ones that will need to carry out my wishes should decisions need to be made.

In the meantime, like I said, I want to let my kids, be kids.  But at least they know, just because I do not show it, does not mean that I am not dealing with some serious health issues.

And just as my children are learning, just because you see this, but do not see something obvious with the person getting out of the vehicle, does not mean that they do not have a health issue that they are dealing with.  But if you feel that you are justified in criticizing anyone anyway?  Feel right on free to trade places with us.

Posted in Adoption, Animals, Bullying, Cancer, Education, Family and Friends, Food, Inspired By..., Recreation, Side Effects, The Heart | Leave a comment
27 Jun 2018

Tag… You’re It


One of my lighter posts today.

Social media takes a lot of knocks, often deservedly so, from stirring the pot of politics, religion, race, etc.  You name an issue, and someone certainly will not be hesitant to launch a grenade onto a social media page to get everyone fired up.  And of course, having an even bigger impact on our lives, having a personal information used by the owners of the particular social media sites.

But I digress.  There is one thing that I do appreciate about social media, Facebook in particular.  No, it is not the cute puppy videos, or travel photos, or flashbacks of days rather forgotten.  But social media has given us an opportunity to reconnect with those in our past like never possible before.  Seriously, you can now live anywhere in the world, and be able to get back in touch with, and stay in contact with anyone.

How far back do you go?  How far would you want to go back?  And why?

Face it, being an adult has its drawbacks.  Responsibility and simply lacking the ability to give a shit does not make being an adult fun (though being a parent is definitely the best feeling in the world).  Look at everything we deal with as adults, politics, war, inflation, crazy weather… we never cared about that as kids.  We could care less.  Playing a game of ball, riding bikes, or just hanging out in an arcade, life was good.

So it would make perfect sense then, to use social media as a way to go back to our childhood.  No, we cannot do it physically, but the memories of a time when our lives may have been simpler, can often be just what we need at a current moment to help us get through a difficult period.

I know on my Facebook, I have several “neighborhood” and school friends that go back more than 45 years, reconnecting in spite of there being over a thousand miles from us.  Every now and then, a photo pops up of us in our younger years, and we can remember everything, every detail of the location, and we cannot help but smile.  Yeah, those were good times.  I remain friends with a kid who lived across the street from me.  I have several friends from elementary school, junior high school, high school, and college.  The levels of friendship vary from casual to remaining the best of friends.  And for the most part, most of these reconnections have survived the controversies blasted on social media.  Instead, the majority of us share stories of our past, support each other as some deal with health issues or other stressful events, and even some, make new travel plans to reconnect in person.

In the movie “Tag” (based on a true story), grown men, 30 years after their childhood, continue a tradition of one game of tag that has continued seemingly forever.  The players get together once a year, for a month, to continue playing.  They have rules that they play by, and pretty much there is no level they will go to, to tag someone.  The thing is, these guys grew up with each other, and continued that friendship 30 years into their adulthood.  I found this very cool.  Why?  Because I still keep in touch with some of my friends when I was a child.  No, we do not play tag or anything, but we do still offer support, share happiness and sorrows.  The friendships are still there, just as in the movie.  And yes, this was based on a true story as the end of the movie shows the actual players involved over the various years, some scenes played out in the movie, others not.  And during the closing credits, and who knew, Jeremy Renner can sing, but you have to stick around for that.

I get the concept behind “Tag”.  In childhood, we did not have to worry about the big issues.  And for most in adulthood, we do not take the time to put those big issues aside, unless we plan it that way.  I say, if you have a chance to get back on that ball field, or hang out in the old basement, do it.  We may change over time, or as some call it, grow up, but the memories are always going to be there, and always available to give us a much needed distraction when needed, to a time when things were simpler.

 

Posted in Education, Family and Friends, Inspired By..., Recreation | Leave a comment

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