Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

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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Too Candid Of A Camera?


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You want to talk about tearing a wall down.

It was discussed on many news networks of a patient being awarded $500,000 because of a recording of the medical personnel involved in his care revealed that they were less than flattering about himself and the procedure he was undergoing.  To be honest, I am shaking my head at this one.  In fact, I am not really sure where to start.  So, I guess I will just give the summary.

The patient, who is never identified in the lawsuit, decided to use his smartphone to record post-op conversations for his release and any other needs.  What he got, quite honestly was more than his colon could take.

Anyone, myself included, who has ever had to undergo a colonoscopy, or any procedure that requires sedation or deeper anesthesia, expects there to be some cognitive issues, whether it be thinking or memory, as you come out of the fog.  And that is why it is normally required that you have some sort of guardian, a responsible party, to sign your release following the procedure.  Normally, that person is a family member, because if there is any “positive” news (the kind of thing that is actually negative to hear), that person is also there for support.  But when that option is not available, you have simply an “acquaintance”, who simply gets notified that you have recovered well enough to be released to someone who is not three sheets to the wind recovering from “la la land.”

Many times, it happens that the doctor will come by to the recovery area, and even though the patient is awake, will begin to discuss the preliminary results or finding even though the likelihood is that the patient will have no recollection.  So what is a patient to do?

Well, one patient had the idea to use his smartphone to record the conversation in just such a case.  In many cases, the patient actually puts their belongings inside of a plastic bag, which will actually accompany the patient to the procedural room.  But instead of hitting the record button during recovery, the patient actually hit “record” prior to heading for the colonoscopy.

We have all seen the television shows from M*A*S*H to ER, Emergency to Grey’s Anatomy.  We all expect there to be conversation inside of the surgery suite.  Topics ranged from entertainment to social status, to perhaps even actual conversation about the procedure itself.  I remember going in for my heart surgery, and the surgeon was actually listening to hard rock music before I was even anesthetized.

Intentional or not, this patient received more than an earful, for pressing “record” before he was expecting to.  Of course for that, he is $500,000 richer, and I am certain that those of us who regularly have procedures that we are anesthetized for, will be under scrutiny, and now having to answer to the question (have your turned your cell phone off) prior to the procedure.

Though my feelings are mixed about this lawsuit, my feelings are mixed about the situation itself.

It turns out the patient was actually humiliated verbally by the anesthesiologist and other personnel, prior to, and during the actual procedure.  The anesthesiologist expressed annoyance with the patient during sedation, enough to harass the sedated patient by saying to the sedated patient that he wanted to punch the patient in the face for the discussion during pre-op.  Comments were made about the way the patient had fears about the procedure, and then of course countless inappropriate insults.  Of course this behavior did not belong in this situation.  And had the patient not recorded the procedure, he… we would have been none the wiser.

I am sure that an incident like this does not happen often.  But seriously, as a patient myself, who has to plead, for the benefit of the person who has to try and put an IV into my chemotherapy destroyed veins, I do not expect to be ridiculed for being a baby for getting stressed out after the 7th or 8th attempt of getting the needle into my vein.  Or perhaps for making sure that doctors and nurses respect my knowledge of the delicate issues that revolve around my cancer survivorship, my life depends on it.  Because of my complicated immune system, if preventative antibiotics are not considered, my risk of not surviving even the most routine of a procedure are high.  There are certain things that can never be done to me because of chemo and radiation damage such as giving me pure oxygen.  I would be mortified knowing that my reward for trying to make sure that those involved in my care, took all the steps necessary, was to end up being mocked.

Should this incident have happened?  Absolutely not.  In fact, I even question the smartphone recording prior to the procedure.  After all, nearly everyone these days of Youtube and Instagram want 15 minutes of fame.  Was it worthy of a $500,000 award?  No.  Should those involved have been punished?  Absolutely.

Will it affect me, my confidence, as my annual testing for my long term cancer survivor issues will be coming around shortly?  I want to say not.  In fact, I cannot afford to think otherwise.  I have a lot of serious issues.  I need to have the confidence in my team that is treating me.  But if I am being honest, it will be at least a blip on my radar.

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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