Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Family and Friends”

Who Is The Doctor Here?


I will be the first to admit that I have no idea how long it takes to become a doctor or be a doctor. And with the exception of my family practitioner and perhaps a few others especially at major cancer hospitals, I have no problem stating that the majority of doctors have no concept of what it takes to care for a cancer survivor.

Yes, I am very frustrated right now. Over the years I have seen so many cancer survivors go through so much torment trying to convince their doctors that something was wrong, but because of the unusual circumstances of being a long term cancer survivor, and developing late term side effects, understanding our symptoms is not something always easily figured out. Chances most likely going to an emergency room with a cough as a cancer survivor, the patient is probably going to be checked for pulmonary issues only, regardless of the likelihood of congestive heart failure to due either chemotherapy or radiation therapy. Taking preventative steps to reduce the chances of infection due to a compromised immune system may just make the difference between life and death.

Like I said, I have seen so many cancer patients over the years go through so much. Most of our time is spent arguing for our medical advocate to keep looking, that we are not making our symptoms up.

Recently, I gave a couple of residents that very lesson. The patient was in the hospital with a persistant and productive cough. The obvious direction would be something pulmonary related. And probably in many cases that would be what it would end up being. But when you factor in a prior and major heart attack, combined with a recent lobectomy for lung cancer, chemotherapy and radiation, you need to look at every possibility, not just “nickel and dime” the diagnostic process. If there is something major going on, time is too important to waste like that. I argued for the patient to get an echocardiogram only to be told that an EKG had been done, and it should the heart had normal rhythmn. That was not what I was getting at.

On the third day in the hospital for the patient, still dealing with the chronic cough and confirmed fluid build-up in the chest cavity, a new symptom popped up. The patient had a 20 point difference in blood pressure from one arm to the other. While this may happen, the fact that they were recording a reading from the arm which was giving the higher numbers, kept them from realizing that his blood pressure was actually low, just as what originally prompted the emergency room visit. With hemoglobin numbers also borderline low, enough to warrant a transfusion, I had finally had enough of no one paying attention to the possibility of a cardiac issue as the probably cause.

I pulled the patient’s nurse aside, and explained a recent case that was hauntingly similar as far as the onset of symptoms. And I punctuated my concerns with the fact that this other patient had died at a very young age. While doctors originally chased that former patient around for a pulmonary issue, he was dying from a cardiac issue. I did not want to see another patient who was already mirroring the other with symptoms meet the same end. I wanted the patient to get an echocardiogram. With tears streaming down her cheek, she agreed that a cancer patient like this, needed to have the extra surveillance and consulted with the doctor, and it was ordered.

Now this is not going to be a very clean ending, because the echocardiogram did reveal some cardiac issues, issues that need follow-up at the very least. Cardiac symptoms that no one was aware of, and no plans to follow up on in the near future. They were not the cause of his appearance in the emergency room, those causes have yet to be found.

In all my years counseling cancer patients, this is one of the most frustrating things for me to understand, following up on patients and what should be done. I try not to be cynical to those that feel too much is done to diagnose patients, but as this example shows, cutting corners for a diagnosis, left unnoticed could eventually cost this person his life. Blood tests are done before treatments begin to make sure our bodies are strong enough to handle the poisonous toxins and dangerous radiation. If blood counts are too low, treatments are modified or delayed. But why are imaging studies not done when a treatment is known to have possible side effects on a particular body organ. If damage is occurring, would it not be wise to take a moment, study it, and then decide which is the best solution, either to press forward, or look for an alternative? And then of course, what about when treatments are done? Bloodwork is still done even at the first follow-up, but not the imaging studies.

This patient still has a long way to go. But he now has the doctors’ full and undivided attention. Am I pissed off? Absolutely, a young patient never had the chance, and now another is in the fight for his life, and getting the proper diagnostic care should not be this difficult to get.

Change In Pressure


Part of the departure lecture we get when we fly in an airplane goes something like this…

“in the event of a pressure change in the cabin, a mask will drop from the ceiling. Place the straps around your head and secure the mask over your mouth and nose. Make sure to fasten your own mask before securing anyone else’s.”

It makes perfect sense. If you pass out before you get your own mask because you were unselfishly putting the mask on someone else, what good does it do you? But what happens if the person sitting next to you is your spouse or child? Of course your instinct is to place the mask over the face of your loved one first. But the need is still the same, by the time you secure their mask, you will not likely have the opportunity to place the mask on yourself.

Everyday life is like that for me as a cancer survivor. I have needs that must be taken care of due to late term side effects. Of those needs, seeing more than a dozen different specialist at one of the top cancer hospitals in the country, if not the world, Memorial Sloan Kettering. Every year I have dozens of appointments to attend to make sure that my body is still behaving, and usually, I am facing some sort of other drama as well. This drama puts me into a situation of “will I put the mask on myself first or that of my loved one?”

Last year, it was both my ex-wife(before the filing) and my father. She was dealing with something optional, he was dealing with his diagnosis of lung cancer. Several of my appointments had to be cancelled or delayed so that I could tend to those needs. This year is no different, as I am now dealing with just my father’s situation, and it is around the time of year that all my annual surveillance stuff is done. These are important tests, but as my father’s caregiver, I am between a rock and a hard place. Lung cancer is nothing to mess around with, and we have been believing that it has been caught early enough right from the beginning which is why we need to stay on top of it right now. And if that means delaying my appointments a month or so until his case is finally declared in remission, so be it. It is a conscious decision that I am making.

I just hope I never see that mask drop from the ceiling of an airplane.

One Big Mess Last Week


Last week was one week that I know I was wanting to come to an end real quick. I normally make my blog about one particular topic, but last week was such a mess, literally. Once again, we got hit with our annual mid-February major snowstorm, dumping more than a foot of snow on our area. But to make things even more challenging, I received a phone call from my father while I was on the way to the gym, that he was on his way to the emergency room. He is still dealing with effects from battling his lung cancer. I have my suspicions as to what is behind this repeated flare-up, but then again, I am no doctor. Decisions that my father made in regards to his treatments were his to make. All I can do is make sure that he is cared for properly to deal with these side effects.

My father did not have any intention of remaining in the hospital passed Wednesday as the weather forecast was calling for a major snowfall, so he had every plan of going home. His situation got complicated, which I will put into another post. Because this post took a completely unexpected turn for me later that evening.

For the second time in two months, I am saying good bye to another young life. I received a call that my brother’s step son had died in a car accident earlier in the day. The details of the accident have not been made public, and to be honest, I do not know or think that having those details will provide any consolation.

I only knew James casually, and to me, he seemed like many other kids I knew, went through his phases, but overall, he was a good kid. I questioned his choices of hair colors and maybe some piercings, but he really was a good kid, reliable. He assisted me with some heavy lifting following my heart surgery. My daughters adored him.

2014 really has not gone the way I was hoping. Next week, my father is looking at yet another procedure. And now there is a funeral to attend. And my father must make choices about that surgery, based upon the arrangements of the funeral for his grandson.

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