Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Family and Friends”

Once Upon A Time


Each year, I write a chapter that gets published in an annual anthology, called “Visible Ink”.  This book is published through the volunteer writing program of the same name, through Memorial Sloan Kettering Cancer Center.  This is my fifth submission.  I hope you enjoy it.

 

I believe in miracles. In my life, I have been blessed with survival of some of the most grave illnesses from cancer, to cardiac disease, and sepsis. And yet, I would still consider the fact that I have two beautiful daughters in my life the biggest miracle of all. You see, I never expected to see this day once I had received the news that I was diagnosed with Hodgkin’s Lymphoma.

One of the first things I told my fiancé when I had been diagnosed back in 1988 was, “I will understand if you want out of the marriage. It is safe to say that we won’t have the fairy tale marriage you grew up hoping to have.”

Boy, did I really underestimate that comment. When I said that, I was thinking only of all the medical appointments, the treatments, and even the possibility that I might not survive, and she would become a widow as quickly as a bride.

One of the reasons that we were getting married was to have a family. But it was not until after my treatments concluded that “family” had even become a thought. I was only concerned with beating the “beast”. By then, it had become too late, or so I had thought.

I underwent “sperm testing” prior to beginning my treatments that had determined I did not have enough viable sperm to make “storing” worth the money involved. It could have been all the stress that I was under that presented that low count, or any other reason. But the fact that I was to start treatments soon, because when it came to treating Hodgkin’s, timing was important. I could not wait for better results. I was crushed.

A year following my treatment, television had begun a strange course. Several shows were seeming to focus on creating a family, unable to conceive, turning to alternative methods. Unfortunately, my wife (now ex #1), had decided that “family” was not going to be in our plans any longer.

Wife #2, knowing my fertility issues, had known in advance, that if we were going to have a family, we would have to seek science to assist us. But it seemed that too, she was having fertility issues as well. There was also a financial risk to consider.

I had accepted my fertility issue more than a decade earlier. This was a new situation for my wife. Simply put, as I posed the question to her to consider, “do you want to have the experience of giving birth, or do you want to be a mother?” With the resources we had left, we could only have one round of in vitro, and if that failed, be left with no other opportunities. But, with adoption, a child coming into our family was almost a guarantee, well, sort of. There was my health history that had to be dealt with, because our society loves to discriminate against cancer survivors.

We attended an informational meeting on adoption, and fell in love with a little girl named “Lily”, who had just come home to the US from China. Financially, it would be one third the cost of a domestic adoption, and all the country of China wanted to know from my doctor, was if I was expected to live a normal expected lifetime. Which my doctor believed without doubt.

On March 14th, 2004, I adopted my oldest daughter. And less than five minutes of her being placed in our arms, we decided to adopt another daughter, also from China. Our youngest daughter was placed in our arms on February 6, 2006. And there was the “fairy tale” dream that I had, of becoming a father after all.

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But my fairy tale is not ending there. Nor has my life post-cancer. As a long term survivor, I deal with a lot of issues from late developing side effects, which one of those, almost cost me my life. But that event brought to the front, the need for care for me, that I was unaware of as necessary, and had been ignored for so long.

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That care brought me to Memorial Sloan Kettering where the most caring, most experienced team of professionals was put together by me, to give me balanced post-cancer care, to… as Dr. Oeffinger put it, “to make sure that I see becoming a grandfather.”

Not even since that original diagnosis, had I even thought that I would be here in the new millennium, let alone being a father, but having thoughts of becoming a grandfather. And with my daughters only being age 12 and 10, I am hoping they wait a long time. But the life we have ahead of us right now, I am glad to have that chance. And that, is a miracle.

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A Survivor – A Living Metaphor


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I think it is safe to say, no one, who has ever had to battle cancer, wants to have their life defined by cancer.  But the reality is, and doctors need to be more up front about this, cancer will always  be a part of our lives when it does happen.  But it is how you live your life in spite of cancer that makes the difference.

Sure, initially I spent my early days of remission worrying daily about the return of my Hodgkin’s Lymphoma.  And as time went by, the worrying faded.  Days became weeks, weeks became months, and then years.  But the fear of recurrence faded as the time went on.  Unfortunately, like many others who are in their decades of survivorship, we have had to face quite a bit more challenges in our survival, due to the late developing side effects from the highly toxic and destructive dosages of radiation and chemotherapies.

And with everything I have had to deal with health wise, I still do not live in the fear of my cancer, or its effects.  Quite the contrary.  I take what I have learned in my survival, and apply those lessons to anything negative or challenging in real life.

The Diagnosis

We are given the bad news, the challenge that we must face.  It is going to be difficult.  Statistics will not likely be on our side.  But from the moment we face the “cancer”, we must do all we can to not let that “cancer” beat us.  And I am not talking in the physical sense of loss, but the spiritual.  We cannot let any “cancer” take away who we really are.

The Prognosis

So, is it going to beat you?  Or are you going to do everything you can to get through it?  You know it will not be easy.  As the saying goes, “quitters never win, and winners never lose.”

The Team

Surround yourself with experts that know how to help you get through the ordeal.  Accept support from those that care.  Ignore those who think only negative or that it cannot be done.

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The Treatment Plan

The next days, weeks, months, and in many cases, years may not be easy.  You may have a good day, and the next two or three days may be horrible.  This cycle will go back and forth the entire duration.  But as you get through the bad times, you not only become tougher, but you realize that you actually can endure.  You start to look to the future as a realistic goal.  Survivorship is at hand.

The Fight Concludes

It is done.  You have made it.  It was not easy.  There may have been times that you felt like giving up.  But it was not in you.  The truth is, it never has been in you.  And once you have the taste of what it takes to survive one fight, you know that you have what it takes to survive the next one, and the next one.  And every day, you know that what you are fighting for is worth it.

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Remembering Easters With My Dad


There is one unfortunate thing that I had in common with my father, neither of us enjoyed holidays, any of them.  We both had our reasons, similarly, multiple crisis and tragedies that seem to occur at nearly every holiday.  For me, it went a level higher with the spiritual sense, because following my battle with Hodgkin’s Lymphoma, I looked at the big two holidays, Christmas and Easter, for what they were supposed to mean to me, especially given another shot at life.  But the commercialization of all of the holidays, combined with the unfortunate events, just left me really disliking what they holidays were becoming.

My parents divorced when I was very young.  My mother had custody of my sister and I.  But early on, my dad did share some holiday spirit (gifts and Easter candy), though I honestly cannot remember if it was on the actual holidays.  And as I grew, I definitely remember him not being there at all.

I have discussed the relationship with my father in past posts.  Long story short, in my early 20’s, we made amends sort of, agreeing to move on with our lives, build from there, and whatever happened, happened.

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In the mid 1990’s, he and I, along with my brother and sisters started a new tradition.  We did not really recognize the holiday itself, but my father decided that on Easter, he wanted everyone to get together at his house.  My stepmother and Dad would prepare the entire meal.  All we had to do was show up.  And we did.  It was one of the few times that all of us were in a house all together like that.  My stepmother had also begun a tradition, going to a local flea market, and purchasing ceramic Easter eggs which she gave to all the females of the family.

But following a horrific car accident, my stepmother being hit by a car, changed what after a few promising years had become.  For obvious reasons, as she struggled to survive for many months, Easter had been put on hold that year.  But the following year, all us children had decided that we would help my father to once again, hold the Easter dinner.  My brother had actually went and bought the ceramic eggs for my stepmother.  And all the children would contribute food in some form.  Inspired by our effort, my Dad stated that he wanted to take care of the Easter ham.

After the meal was done, we would go outside to hold an Easter egg hunt for my dad’s grandchildren.  My brother and I started a new and weird tradition, doing the Easter dishes.  This would go on for a couple of years.  But another loss, the passing of my sister from a battle with ALL (a blood cancer), we struggled to get together, all with the same efforts.  My brother, other sister, and I would also experience our first divorce during these years since the tradition began.  But for my Dad, we kept on doing it, year after year.

But as much as my dislike for the holidays that I had, with the arrival of my daughters, Easter celebration with my Dad took on a whole new meaning.

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There is no doubt that my daughters played a pivotal role on me giving the celebration of holidays another chance.  Year after year, my daughters would participate in egg hunts along with all of their cousins.

In February of 2013, my father was diagnosed with lung cancer.  Once again we were faced with another Easter being considered for cancellation.  My Dad was concerned that he would not physically be up for it.  But all of us assured my Dad that we wanted to take full responsibility this year, including the ham to keep going what we had grown.  He reluctantly agreed.

Several months later, his cancer turned more aggressive.  He was declared terminal.  And in 2014, as yet another Easter holiday was approaching, this time my father was in a nursing home, in hospice.  We had arranged for my stepmother to be with him, staying in the same nursing home, as they had never been separated before in over 40 years, and we did not want them separated in what could most likely be his last days.  As Easter of 2014 came up, we all decided that we would do Easter together as we had for so many years.

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Easter would be brought to both my Dad and stepmother, and throughout the day, we would all join them.  All the food would be cooked and brought to the home.  And yes, the ceramic eggs were bought.

My Dad passed away a little over a month later.  Easter just does not seem the same.  It is just Sunday to me today.  I know the religious importance of the day as I was taught.  But for all the celebrations and gatherings, the day remains empty for me.

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