Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Cancer”

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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Remembering Anita


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The above image is from a fellow long term survivor of Hodkin’s Lymphoma’s FB page.  Anita was the moderator of a Facebook page for long term survivor’s like me, which helped to provide support and information, in a world, no matter how many doctors exist, long term survivors of many cancers remain unable to find the help that they need.

This morning, I learned of Anita’s unexpected passing.  Perhaps unexpected is really an inappropriate word.  When someone unexpectedly dies, it is because a person is otherwise considered healthy.  And when someone who is considered healthy goes to the hospital, they are handled as such.  But cancer survivors, and I will speak only specifically about Hodkin’s Lymphoma survivors because that is the cancer I battled over 25 years ago, are not healthy.  In fact, unless you have been treated for Hodgkin’s in the new millennium, or at the least, after 1990, there is a good chance that you were treated with such harsh and toxic drugs, and exposure to radiation four times the lifetime maximum a human being is supposed to ever see.  And as statistics often point out, the benchmark of survival is five years.  We all look to reach that goal.

It is what happens after that five years, that becomes the problem.  Medicine never really studied the late effects on the body of cancer survivors because simply put, we were not expected to live long enough to develop them.  BUT WE DO LIVE LONG ENOUGH TO DEVELOP THEM!

Which is why, what Anita has done for literally nearly 300 other Hodgkin’s long term survivors, has made a difference in each of our lives.  Anita is not the first person to take on such a supportive venture, as it was to her benefit as well.  I first learned about long term survivorship from a woman named Linda Zame who co-founded a support group for long term survivors on the American Cancer On-line Resources site… acor.org .  She invited me to that online support group in 1997, and though I was having no issues yet, it was because of what I learned from her, and the nearly 500 others in that group, what I would eventually be dealing with in my survivorship, and how critical it would be for me to be my own advocate for my health care.  Sadly, she also passed away following complications from a medical procedure.

The thing is, I knew Anita, fairly casually, only through private message exchanges in regard to operations or situations on the Facebook page.  But that does not make her death any less painful for me.  Since 1997, I have said goodbye to so many other long term survivors, who did not die from their cancer, but from complications of their survivorship.  Because of each and every one of them, any medical professional that has me as a patient, gets an education from me in cancer survivor care whether they want it or not.  I learned from others the precautions that need to be taken with all of my issues (cardiac, pulmonary, spinal, muscular, GI, immunological, and psychological) and for that I am eternally grateful to people like Anita and Linda.

It had originally been suspected that Anita was dealing with pneumonia.  And with the average healthy person, her symptoms may have resulted in that diagnosis.  Unfortunately, discovered too late, it was congestive heart failure, a common fate for those who have survived so long, and for too many, undiagnosed with this condition because medical knowledge is not available or taught to every doctor to look for.

Yes, I am going to have my typical day remembering another survivor who has passed, difficult.  I will do my best to be inspired by all the good that she has done for survivors all over, so that I do not overwhelm myself with the thoughts of similar issues that I, and other survivors deal with on a daily basis.

Anita, I know you are in a special place right now.  But I want you to know, I appreciate everything you did for me in the brief time we knew each other.  Your support and encouragement will be missed.

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