Paul's Heart

Life As A Dad, And A Survivor

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.

Tiger Behind One Door, Lion Behind The Other


My father’s current battle against lung cancer has stirred up an internal struggle within himself, that I know that just like millions of others, including myself have gone through.

A diagnosis of cancer is bad enough because without any form of treatment, whether it be just surgery, chemotherapy, or radiation therapy, or a combination of any or all, the result is almost always going to be death. But we have seen the television commercials for all kinds of prescription medications for any number of maladies that promise the possibility of relief, but come with a risk of making things worse. Okay, men take the “blue pill” to still function in the bedroom, but the risk is a possible drop in blood pressure. For men, this may be worth the risk. I personally would not know. Medications for blood pressure or preventing blood clots may actually increase the risk of a cardiac event. And the most disturbing of all, taking an antidepressant that might just actually increase the risk of committing suicide. It is a wonder that we risk taking anything at all.

But unlike the prior mentioned illnesses and others, there is no other choice when it comes to cancer. I do not mean any disrespect at all to those who choose to go the holistic route, but as a long term survivor of Hodgkin’s Lymphoma, I have to stand firm that I believe as a cancer patient, you must go with what has been scientifically proven, if you want any chance of seeing remission. Holistic can be complimentary, with approval from the oncologist, but unless it is a last resort, holistic should not be considered alternative.

As a long term survivor of cancer, I actually do still recall the days when I was warned of possible short term side effects. It was not known back then the risks of late developing side effects like I have now. But even the list of short term side effects were enough to have me concerned, but the alternative was far worse. For my dad, it was no different.

Surgery was supposed to take care of what was supposed to be a stage 1 lung cancer, that quickly was upgraded to stage 3. Surgery was supposed to have taken care of the cancer, but then the oncologist recommended chemotherapy to take care of any straggler cancer cells not picked up on with blood work or scan. My dad knew what that would mean, and of course, the information sheets came out with the list of possible side effects for both of the drugs he would be given. But just as he completed chemo, and was feeling good about his accomplishment, he felt the rug being pulled out from underneath him as the oncologist informed him that it was felt radiation should still be considered just in case any cancer cells survived the chemo. Though the likelihood of any cancer cells still existed, the doctor convinced my father the benefit to undergoing radiation therapy far outweighed the risk of any side effects. This is in spite of what my father has witnessed me go through.

So now my father has gone through, surgery, chemo, and radiation, all to survive radiation cancer. And he has gotten through it. But the rug has been pulled out from under him again, and he does not hold back his feeling on this. Though the cause is unknown, and I have my suspicions, my father’s chest is filling with fluid, and now is facing yet another surgery to deal with the drainage. I have grown frustrated with this situation, because my father is being put through so much, “just in case”, and now we have an issue that is quite serious. Fluid in the lungs makes it difficult to breath, and puts pressure on the heart. While it has been his signature that has given the permission to proceed with each step, I still hold the doctors responsible for convincing for any and all things that are developing with my dad. There are many risks that my dad faces with each step of this journey, yet I seem to be the only one who is concerned about them?.

During my father’s latest hospitalization for this fluid issue, I convinced the doctors to order an echochardiogram for his heart. The doctors have been treating him as pulmonary, but with my father’s cardiac history, and having been exposed to chemo and radiation, this should have been a no-brainer, yet for months now has gone without attention. But with my history, knowledge, and experience, I convinced my father’s nurse, who then convinced the doctor, to order that simple test to see if that was the possible cause of the fluid build up. You see, if you heart does not beat like it should, due to the fluid, it can lead to congestive heart failure. But the test can also reveal that the heart has taken some sort of abuse from the chemo and the radiation.

The echo has revealed some slight decrease in function as well as some fluid around the heart, though it is not the cause of his fluid build up currently. But my anger that is growing with my father’s care, is why did it take my arguing to confirm this? Just recently, a family lost their 24 year old son, because the doctors were not following up for developing side effects.

I am grateful that now my father will be followed up for this developing cardiac issue so that it can be managed before it gets too late as mine almost was. I understand my father’s frustration when he gets through one thing, and then finds himself opening yet another door only to be greeted by another unfriendly challenge. But I do give my dad credit. He is not giving up as he wants to be there for his wife who he cares for her needs at home.

In the meantime, we still do not know what is actually causing the fluid build up. We just prepare to manage it.

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