Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

The Right Thing To Do


A recent news story on a Philadelphia television station that was shared on Facebook, showed a wonderful story about an elderly couple, married for decades, being reunited, staying together in the same nursing home in their twilight years.  To the average person, you may not think this is that big of a deal, that it should be fairly easy to accomplish if both people need to be in a nursing home.  Now, I am not talking about an assisted living community, or retirement home.  To get two spouses together in the same nursing homes in their twilight years, is in fact, quite a difficult thing to accomplish.  While it is the right thing to do, policies and procedures usually do not allow any room for exceptions, and even if it means splitting up two people who have been together for decades… as in 40 and 50 years, and to die alone, so be it.

I got to experience this first hand when my father was in the final stages of lung cancer.  He and my stepmother had been together for over 40 years.  But his declining health, along with her own health care needs from being left with permanent injuries from an auto accident, looked to finally be bringing their time together, to an end.

My brother and I had discovered the pending situation following initial lung surgery that my father had.  At some point during the surgery and recovery, he suffered a stroke.  Long story short, the hospital had informed us, that he would not be able to go home without someone to care for him until his recovery, since his wife was unable to care for him.  So there we were, needing to find someone long term to care for my stepmother, but also having to find some facility to take care of my father.  It took a lot of effort working with county workers, who were already involved with my stepmother’s care, but care at home was arranged for my father so that they could remain with each other.

But when the cancer spread, and became more aggressive, his next trip back to the hospital would be his last.  Cancer cells spreading to his brain made it impossible for him to be on his own anymore.

Immediately my brother and I tried to figure out what to do.  No matter what, we wanted our parents (his mother and my father) to be together again.  But there were two main factors working against us.  Number one was the fact that each had their own level of care, and it was impossible trying to find a facility that would handle both assisted needs, and skilled care.  The best we had found was a complex that had several buildings on its campus, one building for assisted care, and another for skilled.  They would be able to spend time with each other during the day at least.  But I was not going to give up.  This was not good enough.

So we contacted the county for assistance again, and this time we found a facility that would handle both levels of care.  But now there was a different hitch.  My father a long time ago had done what he thought was the right thing, and purchased additional health insurance to supplement their medicare.  And it would be that supplemental insurance that would prevent his admission to the nursing home that would accept both of their needs.

With my father heading toward hospice level care, and my stepmother already admitted to the home, my brother and I made the decision to cancel my father’s supplemental insurance which was keeping him from being admitted, and had the potential to keep him from ever seeing his wife again.

Twenty four hours later, we got the news, the home would accept my father.  Both he and my stepmother would be together again.

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His admission did not go off without a hitch however.  Upon my arrival before my dad, the administrator had given me a good news/bad news scenario.  The home had gone so far as to arrange for the two of them to be in the same room with each other, which actually went beyond what we could have hoped.  But my stepmother had made a decision, she did not want to be in the same room.  My dad had a habit of watching television all night long, and loud, and my stepmother in the time that my father had been hospitalized had become accustomed to silence while sleeping.  We laughed about the situation, because unfortunately he was expecting to be in her room.  He blew her reluctance off, saying she was just mad and would get over it in a day.

The next day, the “old goat” as my stepmother referred to my father, had pushed the empty bed in his room that was meant for my stepmother, against his bed, making his own “king” sized bed.  When questioned by the staff what he was doing, “my wife is going to be sleeping with me tonight.”  We all laughed uncomfortably because we were pretty sure that… well… he meant “sleep”.  After all, I know I have heard of some stories of “romantic rendezvous” in nursing homes.

They never did go into the same room with each other.  But they did have meals, play games, and listened to music with each other, just as they did for over 40 years.

the day he passed

This is the final photo of my father and stepmother.  Because of the efforts of my brother and I, county workers, and so many more, we were able to accomplish the “right thing”.  He would pass shortly after this photo was taken, but as if a Hollywood movie script, in the end, they were together, as he had been her caregiver for so long, it was her turn to be there for him.

If there was anything good to have come from this situation…

 

When You Don’t Get Another Chance


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I learned about this expression a long time ago.  It was a very painful lesson, one that my father took with him to his grave.

Though I do not recall the year that it happened, I do remember that the event happened just days before Christmas, many years ago.  My father and my stepmother were having a discussion about insurance issues, that progressed into an argument.  They still had some last minute Christmas shopping to do.  They left their house just moments apart, my father first.  He got into his car, started the engine, then looked across the street to where my stepmother was now beginning to cross during the dusk hour of the evening.  And then it happened.  My stepmother never saw the car that hit her, and the injuries were critical and extreme.

On the plus side she would eventually recover enough to be released from the rehab facility, but clearly nowhere near a 100% recovery, if even 50%.  She also would have no memory of the accident itself.  And no memory of the accident, also meant that she had no idea of the discussion that the two of them were having that evening, before the accident.

For my father, that meant he would never have any opportunity to apologize for the conversation that evening, and bore 100% responsibility for the accident itself, feeling that if he had not left the house in such an angered rush, he would have been walking across the street with her, and being able to prevent her from being in the path of the oncoming car.  Yes, my father took that evening with him to his grave.

The fact of the matter is, there is always going to be that chance that we never get the opportunity to make things right, once it is taken away from us.

Anyone who has followed “Paul’s Heart”, knows that my daughters mean the world to me.  They are everything.  Every night (prior to my divorce filing), I held them.  I gave them a goodnight kiss.  And I told them that I loved them.

On April 16, 2008, I had a conversation with my daughters that I was going to be going away overnight.  Being they were only five and three years of age, I could only give them minimal information.  I told them that I was going to be going to the doctor, and it was going to get real late, so I would be staying overnight.  I gave them their kiss, and told them I loved them.  This would be the first time that we would be apart, ever.

As it was planned, I was going to have a minimally invasive cardiac procedure, and I expected no differently than to return home later the next day.  Unfortunately, that is not what happened.

I was informed by the doctors that the damage was not only unexpected, but not caused by common ailments.  The main artery going to my heart had become so scarred from radiation damage eighteen years earlier, I had a condition referred to unprofessionally as, a “widow maker.”  I was going to need emergency heart bypass surgery in less than 24 hours.  I would not be going home.  I would not get to see my daughters again until at the very least, unless the surgery would be successful.

The next several hours went by so quickly between the anesthesia wearing off from the procedure done earlier, followed by all the pre-surgery testing I had to go through, because doctors were dealing with a situation, that they did not have a lot of experience dealing with, a long term cancer survivor.

When the night finally slowed down, and I waited for the orderly to come for me, to take me to surgery, 6:00 arrived, and I arranged with my daughter’s mother to speak to them on the phone.  I could not hold them.  I could not see them.  They could not see that I was scared that I might not see them again.  All I could do is tell them that I loved them.  If everything went well, it would be at least another two days before I was even able to talk to them on the phone.

This is a time period that to this day causes me such sadness.

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A week later, I was sent home, with my two very happy and caring little girls.  They knew that I had a very bad “boo boo” on my chest, and they took very good care of me.  Today, they understand that my health is not like everyone else.  And that is why I am doing all that I can to deal with the divorce issues with their mother so that the four of us can go on in the direction that we have chosen.  I do not want to ever have the situation again, that I did not get that one last chance with my daughters.

I have had two very extreme lessons in my life, about second chances, actually a lot more, but only used two for this post.  But you get the idea.  It is okay to have an argument.  But it is better to resolve it when you have the chance.  A lifetime of guilt is a horrible cross to bear.

Recovering From Hair Loss After Treatments


“Hair, hair, hair, hair, hair, hair, hair.  Flow it, show it.  Long as God can grow it, my hair”

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I ran into a friend the other night, and though it had been a while since I had seen him, his greeting caught me off guard.

“OY!” (he’s Brittish), “I got a pair of blunt scissors in me truck!” he said with his big friendly grin.

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It had been a while since I had seen him, and for those who have not seen me in a while, I have continued to let my hair grow.  And for a very good reason.

I lost the majority of my hair back when I was treated for Hodgkin’s Lymphoma back in 1988 from chemotherapy.  Radiation therapy to the back of my skull left an odd pattern down the middle permanently.

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I have always been sensitive to this.  And one of the things that I swore I would never do, is ever take my hair from granted again.  It was bad enough that baldness ran in my family.  But it is odd, hair loss, is one of the major concerns that a cancer patient has.  We cannot wait for the hair to grow back.

I will admit, that I get a little confused and concerned when I see hair colored lime green, or shaved into some bizarre tribal symbol.  I am not so sure that those people would do that if they had the chance that “cut” or “style” was permanent, or if some other change against their hair style desire was done.

And so, throughout the 1990’s, I made a promise, not to cut my hair (except for styling it).  Unfortunately I did a very bad thing, and it pretty much ended up being “mulleted.”  Sorry, plenty of clip art for that, but it actually turned my stomach trying to select a picture.  But you all know what a mullet is.

At any rate, I ended up cutting my hair after all just into the new millennium, and up until last year, I kept it a fairly short length again.  It was not what I wanted, but for the most part, what everyone else wanted.

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Well, it has been a year now, and only “trims” being done, and I am almost back to the length that I was comfortable covering up my “skunk stripe” on the back of my skull.  It may seem silly to some people why this would be so important to someone, but unless you have been in this situation, you really cannot understand it.

Sorry, no selfie of the length just yet, but to give you an idea…

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