Paul's Heart

I Cannot Let Him Down. I Have Already Done It Once.

I am beginning to feel like Bill Murray in “Groundhog Day.” For the third time in just over three weeks, my father has been put in the hospital with complications of dealing with his lung cancer. It is the same situation each time… nasty cough, difficulty breathing, fluid build up, followed by some time admitted in the hospital, then released. Then the scene repeats itself.

One thing people know about me, is that I am not afraid to speak up as an advocate for someone, regardless of the circumstance. And I would do it for my neighbor, a coworker, or a family member with the same intensity. I am completely disgusted every day that the success of improved medical care does not address what should matter most, receiving the care necessary and letting doctor and nurses do their jobs.

I can forgive the first time the hospital released my father as there was a huge snow storm coming and all he wanted was to be at home with his wife, to make sure that she was safe. And once this monster storm hit, it would be too late as roads would be impassible. But of course, just days later he would be sent back to the hospital, this time by ambulance.

His symptoms would be the same, struggling for breath, a sign that fluid had built up again in his chest cavity as it had been doing. But this time, as his cough continued to get worse, he also developed a low grade fever which the doctors blew off as “typical for someone going through the pulmonary issues” that my father was going through. Unfortunately, on the critical day that he was discharged, I was laid out from exhaustion, and had come down with my own infection from exposure to the hospital environment. He was discharged both anemic, and with a low grade fever.

Then less than a week, he was sent back to the emergency room via ambulance, this time called in by his visiting nurse, again struggling for air, and dangerously low blood pressure. I met my father in the emergency room where the ER doctor came in and said, “well, your vital signs are stable, your blood work is fine, there really is nothing more we can do.”

This was unacceptable, and within five minutes, this doctor was on the phone to the “medicine team” of the hospital, a team of doctors that were responsible for admitting patients who did not meet the needs determined by the ER doctors. The doctor that arrived got an earful from me. This was the third time in three weeks my father has been brought into the ER and it was unacceptable and I was not going to tolerate him being sent home again, still ill, only to come back a third time.

After about fifteen minutes, the doctor agreed with me, my father should not go home and was admitted. Once up in his room, it had been discovered he had a fever, again low grade. This time I insisted on him getting some sort of antibiotic treatment as his cough was worse and more productive. The fluid in his chest was an issue too, but something else was happening. The next day I discovered that a PET scan that he had recently had revealed some sort of activity in his other non-cancerous lung, and hinted at an infection. That meant that whatever this was, existed at the time of his premature discharge the last time. I went berserk and continue to do so with every doctor, therapist, and case manager that comes into his room. My dad has had an infection and it was either overlooked or ignored.

The caseworker tried to tell me that I needed to understand that if Medicare was not going to pay for longer stays then I would have to appeal or possibly be responsible for the charges. I quickly let her know that as my father’s advocate and case manager, it was up to her as well as all the other doctors involved to convince the penpushers at Medicare that my father needed care that went beyond their textbooks. It was ridiculous that I could even see that. And clearly, she did not disagree with me.

I need to get my father healthy enough to endure a lengthy road trip to New York to get a second opinion at a major cancer hospital. But he will not get there if he is not treated properly now for the infection he has, discharged early, only to be brought back Sunday or Monday to the ER, leaving me unable to transport him on Tuesday. I let him down the last time. I will not let it happen again.

He is on his third day of high level antibiotics and will continue for two more days. He got a blood transfusion finally which he should have had two weeks ago. His fever has gone down. But he has grown week as whatever he has been dealing with has drained him of his energy and strength.

But rest assured, while politicos argue back and forth who should have health coverage and who should not, a man is in the fight of his life. And no asshole senator’s life is anymore important than my father and he should have the same health care available to him as the senator. I try to justify why I have survived cancer for so long, why me and not others. This is my struggle, this is my fight. My father deserves the time, resources, and medicines to heal him. And I am going to make sure he gets it.

Sharing Your Excitement

I rememember when I was first diagnosed back in 1988. All I wanted to hear was that I could beat my cancer. I had never heard of a success story, let alone my particular cancer, Hodgkin’s Lymphoma. I wanted to meet anyone, ANYONE who had taken this beast on and meet them. Unfortunately I did not have the internet, or Facebook, or any other digital media. I had heard only of a long lost friend of one of my uncles, and a New York Giants football player, named Carl Nelson. While I was encouraged by my uncle’s friend’s longevity, twenty years, it was unlikely that I would ever get to meet him. Nelson on the other hand, was not far from me, just up the New Jersey turnpike. I wrote to him to see if he could offer me any kind of encouragement. I never heard anything back.

Many months later, after I completed my treatments, I made a promise to myself that I would do whatever I could to get the message out, one person at a time if I had to, that cancer could be beat. That there was life after cancer. All I needed was a medium to communicate it. I started counseling cancer patients through the American Cancer Society and a peer-to-peer program called “Cansurmount” which matched up patients by their cancers. Unfortunately, volunteers were short to come by and doctors were put off by their concerns that as survivors, we might offer medical advice, which I never have and never will, delaying or even cancelling treatments by other patients.

Of course a few years later, the internet came along, for me anyway (I did not buy the original Nintendo until the Xbox came out either). And here I am now, in 2014, my second year of writing “Paul’s Heart”.

Please, feel free to share your stories with me. I have a large number of followers growing every day. If you have been inspired by my story of survival, share yours as well. You can either post it hear on this blog, or on the “Paul’s Heart” Facebook page. But take this chance to inspire others, give hope, that someday, cancer will be beat.