Paul's Heart

Life As A Dad, And A Survivor

Archive for the day “March 8, 2014”

We Need To Give A “Crap”

If you have followed my Facebook page, almost on a daily basis, I have “shared” posts announcing Colon/Rectal Cancer Month recognition. This is a big deal to me, but should also be a big deal to you, male or female.

Now if you are saying, “but Paul, you didn’t have colon cancer. What are you worried about?” And for the most part, you would be correct. I did not have colon cancer. But the treatments that I went through for Hodgkin’s Lymphoma left me susceptible to secondary cancers such as thyroid, lung, esophageal, leukemia, and yes, colon cancer. In fact, the driving force behind my internet outreach for cancer patients was a woman named Linda. It was her mission to make cancer survivors aware of the importance of colon cancer screenings, called colonoscopies. The internet support group that we belonged to had already lost so many fellow survivors to colon cancer, and she too would be diagnosed with, and lose her life to colon cancer.

For years, I have dug my heels in the ground, I was not going to let anyone shove a tube up my ass. Yes, I reduced my opposition to the lowest and crudest objection. But I was clear, my “out door” was not an “in door”. I was not alone in my stance. At work, many of my coworkers also voiced their opposition to any roto rooting. While neither gender is crazy about having this done, I have found that only the male population has any problem revealing their aversion to the painless procedure. And considering the test is one that can save your life, a common reason overheard, and a bigoted one at that, afraid of waking up “gay”. That is right. There are some men who are actually afraid of coming out of the anesthesia with an urge that they have been turned into a homosexual. This is not only a horrible thing to think, but it is stupid, and it could cost you your life if you avoid this simple test for fear of something that is not only not true, but can never happen. I am not even going to carry that discussion any further.

It would be easier to understand as a man, that we might simply be uncomfortable with the thought of laying on a table with our bottom exposed, but that would not be met very well by the millions of women who climb up on a table, placing their legs up in stirrups to be placed on exhibition for their doctor visit. And they are not normally anesthetized. I am one of the few men who can testify as to how that feels, not because I have ovaries, and for the record I do not have them, but having had to deal with a kidney stone, I have had to have my legs placed up on stirrups for a wonderful (NOT!!!) procedure called a cystoscopy. You can Google what that is. But I will say, that was unanesthetized. And if I could handle that going in an orifice that was definitely not meant to have anything inserted, I could certainly undergo a colonoscopy for which I would be anesthetized.

I also did have a reason for undergoing my first colonoscopy last year, and not just because it was a smart thing to do. One of my late effects that I have to deal with from my cancer treatments (actually two of them) pertain to my esophagus which was damaged from radiation therapy, often affecting my ability to swallow foods, and previously, unable to swallow liquids at its worst when it flared up. So I actually undergo both colonoscopy to see if there is anything blocking down there forcing the issue, but also, an endoscopy to see if my esophagus has worsened for what is diagnosed as esophagitis and Barret’s Esophagus. I take a medication to keep it under control, but the truth is, I have an increased risk of esophageal cancer. So, two tests, two purposes, only one result I want, negative.

Last year’s tests did not go as planned, inconclusive. It seems, and this is the reason many do not want to undergo a colonoscopy, my “prep” or cleanout did not go well enough for them to get the pictures necessary. It is hard to believe that drinking two liters of fluid mixed with 37 dosages of laxative did not empty me out enough to get the pictures necessary, but that is what happened. So it was decided that I would repeat this year. Only this time, I would have to do a “super prep” which has meant me drinking a laxative for two weeks already with the normal prep yet to come.

Here is how important this test is, not just to me, but to you as well. I am dealing with caring for my father. I cannot put this test off any longer than I already have, because cancer does not wait. And the sooner it is caught, if there is any, the better chance of beating colon cancer. So, being a master of multi-tasking, I will have to really plan out carefully a trip to Sloan Kettering for my father and I, because my tests are the following day, and I must begin the aggressive “prep” before I even get to leave Manhattan. It will literally be a race against time, pushing cotton, “prairie doggin”, turtle popping out of the shell. I expect my three hour drive to stretch out to five hours until we get home.

I do not expect to hear the words cancer. This test is about prevention. I feel okay. My swallowing issue is minimally inconvenient right now. But as long as I have “prepped” enough this time, I expect the photos to be good, and the news to be negative. And there is comfort in knowing those in my life will not have to hear that I am dealing with cancer again, for at least the time being.

But even if you do not have the increased cancer risks for whatever the reason, other cancers, obesity, if your doctor wants you to undergo a colonoscopy, you need to do it. The test can save your life. And no foolish notion can ever justify me attending a funeral for something that could have been dealt with. The test itself does not hurt. Ignoring it does.

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.

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