Paul's Heart

Life As A Dad, And A Survivor

Archive for the tag “oncology”

The Value Of A Visitor

It is only common sense to think that the most important people in the hospital are going to be the doctors and nurses. I want to present the argument for the family member as one of the most important visitor of a patient. It can be a spouse, a parent, a sibling, but someone who has spent more time with the patient and knows the ins and outs, the norms, what is right with their family member.

Case in point. My father had gone into the hospital for lung cancer surgery. Everything had gone as well as could be expected for a lifetime smoker with other health complications, but overall, the news we had been given was actually quite good. The surgeons had extracted all of the cancer and though originally not planned, were able to leave half of the lung in tact. My father had spent a little extra time in the recovery room as he did not want to come out of the anesthesia as quickly as the doctors would have liked, but overall, it seemed we would turn the page successfully.

When my dad was brought up to his room, clearly he was not comfortable. This was to be expected after being cut from one side of his body to the other, his one arm being placed above his shoulder for an extended period of time, and unfortunately a few drainage tubes. Medication would help with his discomfort. But by the next day, the doctors would want him moving and eating. It was not happening. The doctors chose to give him a little more time. My father was not fighting them, and for the most part, he was able to communicate with them.

But on the third day I got a phone call from my brother asking me about my father’s eye glasses and if I had them. I told him that I did have them and was bringing them with me later that day. When I asked my brother why, he told me that my father could not see the cup of coffee right under his nose. Though my brother should know better than I, my father’s eyesight is not that bad. But my brother was adamant about it, my father could not see the coffee right in front of him. I got to the hospital later that afternoon, and upon finding out that my father had not eaten, in spite of the food being placed in front of him, hunger should have been an issue after three days.

I noticed he was not wearing his dentures. Maybe this was why he was not eating. “Dad, here are your dentures,” as I had the case in my hand. He looked up at me, “I got ’em in”. We traded “no you don’t” and “yes I do” a couple of times, and then in spite of me holding the open case with his dentures in it, he proceeded to put his hand to his mouth and started yanking at his gums as if he were trying to remove them to show me that they were in his mouth. And then he abruptly stopped trying to show me.

I have heard my father laugh so I know that he has a sense of humor, but he is not a “slapstick” humor kind of guy. My brother witnessed my father’s struggle and we agreed something was not right and brought this to the attention of the nurse who then consulted the doctor in charge who then felt it would be a good idea to bring in a neurologist. I had no idea how that would tie into oncology or pulmonology. But the neurologist came in, took a look at my dad, who at that particular moment offered nothing off-the-wall in form of commentary or behavior, and the neurologist felt there was no issue and moved on.

As time went on, having a conversation with my father was only as long as the attention span of a flea before he would seem to drift off. We would get his attention and resume the conversation. Later that evening, I told my brother that we needed to get my father to eat some how and that I would go down to the cafeteria to get him whatever we could to get him to eat. I knew he liked fried mozzarella sticks and in spite of them being unhealthy, I needed him to eat.

I put them in front of him, and again, he did not even look at them. So I placed a stick in his hand, and he proceeded to take a bite. “Hmm… these are good. How did they make them so soft?”, he asked. I asked, “what do you mean?” He responded, “these carrot sticks…they’re so soft.” I looked at my brother and we were both horrified. Again, my dad does not have that level of sense of humor that both my brother and I possess to make a joke like that. Something was wrong. “Dad, that’s a mozzarella stick.” “No, it’s a carrot stick. It’s orange see?”

Again, my brother and I raised the concern with the nurse who again made the doctor and neurologist return. The neurologist sat down in front of my father with a piece of paper and a pencil and drew five columns of horizontal lines and then handed the pencil to my father and told him to draw a perpendicular line through each. My father happily complied and then said, “finished.” My brother and I looked at each other, then at the neurologist who then said to my dad, “what about the rest of the lines?” My dad said that he had finished what he was asked, and then the neurologist moved the paper two inches to the left and just then my father realized that he had missed the last three columns on the right. “Hmmm…I didn’t see those” and proceeded to cross another two columns missing the third column. We went through the same process one more time.

The neurologist told us, your father has had a stroke, clearly on the left side as he was not seeing anything on the right side. And as he walked, he also veered to the right as he could not see, nearly walking into the doorway in his room.

As we are all told, the key to recovering from a stroke is timing, how quickly it is recognized and treated. My father went for an MRI that evening, fought it, and had to have a CAT scan the following night which revealed not one, but two strokes on the left side of the brain. Just two days before, the neurologist had said that my father was fine. But my brother and I knew something was not right. And these strokes very well may have occurred in the recovery room or during the surgery. We will never know, nor does it matter at this point.

There is more to this story from the recovery point of view, but the point of this post, is proving the value of having family involved as much as possible when a loved one is in the hospital.

Closure – I’m Sorry That It Took This Long

I am grateful to anyone who is charged with having to take care of me as a patient.  It is not that I am a bad patient to deal with, quite the contrary.  Hardly a peep is ever heard out of me.  Complaints are never made about discomfort or pain.  While hospitalized, I do not hit the nurse “call” button multiple times in an hour.  But, there in lies the issue.  Nurses and technicians do have hearts.  They do care about their patients.  And I am certain that they are not happy when a patient lets themselves get so far into a level of pain and discomfort before asking for assistance. 

But a lot of good writing about my gratitude for my caregivers does here.  Spoiler alert – except for a couple of years ago, it had been two decades since I had seen the two caregivers that saved my life, literally, saved my life.  There was one thing that I did not do in my excitedness to be finished with my treatments – say “thank you” to Noreen and Brenda, my radiation tech and my oncology nurse.  These two individuals deal with one of the most horrible illnesses known to man, often resulting in death.  But they also have successes, of which I am one.  But did they know that?

So two years ago, my twentieth year in remission, or some consider cured of my Hodgkin’s Disease, I set out to find the two women responsible for saving my life.  The odds were against me, as I only remembered their first names, but at least that was a start.  I found Noreen no longer at the hospital I was treated with radiation, but rather at another hospital in another network, still in the same field, just no longer directly as a technician, more in line with computer support for the newer technology.

Brenda was a bit more challenging to find.  She had retired, and no one from the doctor’s office would release any information to me.  So, I left them my name and phone number and an explanation of who I was (imagine, I had survived longer than any of their employees stayed working there).  A phone call from a nurse who had worked with Brenda had called me with good news.  Though retired, Brenda was still involved with cancer support, just in the hospital environment.  She was serving as emotional support, and did this three days a week.

I was set.  I tried to remember what it was like the last time that I had seen each of them.  I definitely remembered what they looked like.  Wow.  I had pushed those memories so far back because all I wanted to do was forget them once I was done.  But as I thought about it, not only owing my life to them, they cared for me.  They cared about me.  Together, they were the reasons that I stayed in that network for my treatments.

It was the following week, and I was headed to Allentown for physical therapy.  Both women were approximately ten minutes away, in each direction.  Since the hospital where Noreen was closest to where I was doing physical therapy, I stopped to see her first.  I arrived at the reception area of the radiation therapy department.  I clearly caught the receptionist off guard the way that I requested to see Noreen.  I was refusing to give my name (I don’t know why), just told the woman to tell Noreen that a former patient of hers has come by to see her.

Noreen came through the double doors, and less the white lab coat, I knew it was her.  She looked like she had seen a ghost.  I asked her if she remembered me and she did.  Actually it was due to the unusual circumstance of the first day of my radiation treatments, the linear accelerator broke down with me on the table.  Immediate flashbacks to Bill Bixby on the television swelling and turning green into the incredible Hulk.

We spent the next twenty minutes or so catching up.  She told me of her new work with her old field and then went on to tell me all the advances that had been made in raditation therapy since my day.  And then she heard what I had been through with the heart bypass surgery, and all of the other long term side effects I was diagnosed with from my treatments.  And tears fell from her eyes.  “We had no idea.  We had no idea what would happen to you and other patients with you.  We just knew it worked.”  I told her that I had no regrets, and how good my life had finally become.  And then I did what I should have done twenty years before that, I told her “thank you.”  We hugged, and then parted ways.  If I was going to get to see Brenda, I needed to hurry as it was getting late.

The office that Brenda has worked in when she treated me was still standing, but the oncology practice had moved across the street, to a wing built onto the hospital.  I got turned around quite a few times, but found my way to the cancer floor.  I was led by the recepetionist back through an office, weaving through cubicles.  The last cubicle on the right was occupied by an elderly woman with a perfectly frosted hair style, no chance of mistaken identity, this was Brenda.  I knocked on her cubicle wall and she turned around.

There was that motherly comforting smile that got me through nine months worth of Fridays and treatments.  Brenda was now volunteering to work with cancer patients with personal issues.  She was perfect for that role.  She asked how I had made out all of these years.  Eventually we got to “family” and told her how I wish I had followed her advice when I was younger, but I did have my family after all, with two beautiful daughters who I had adopted.  I told her that I am now seen at Memorial Sloan Kettering in the Survivorship Program to follow up my long term needs.

Since I was in the hospital visiting, I asked Brenda if John (my counselor when I was going through treatments) was still working in the hospital, and he was.  So Brenda took me downstairs to yet another reception area.  I saw a lot of familiar faces and then out came the gentlest giant of a man, John.  I did not get to spend much time with him like I did with Brenda and Noreen, but I did get to ask him about the first counselor I saw before I began my chemo.  Her name was Illona, another great mother figure to me.  Sadly, John informed me that she had past away several years ago, in the cruelest of ironies, from cancer.

One final thing to do before I ended this overwhelmingly emotional visit.  I thanked each and every one of them for giving me the life, in spite of the late side effects I deal with, that I truly love and cherish.  I do not know if I will ever see them again, but I made sure they knew, that they did cure this patient and I was appreciative and thankful for that.

Noreen, Brenda, John, and Illona, thank you.

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