Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Inspired By…”

#1 Down


Last evening I wrote about two different journeys that shared the same date.  I am waiting to hear the results of the “kid” who had his first PET scan post treatment,  of which hopefully he and his family will hear the word “remission.”

But today was my father’s first treatment against lung cancer.  Surgery was originally expected to take care of the cancer, but it was later felt that some preventative chemo would best provide and maintain remission for him.

My father had confessed to me, just moments before his appointment, he had contemplated backing out completely.  He still was not convinced that he could endure the toxic compounds that were going to be pushed through his veins.  But here we were at 11:45am walking into the lobby of the Dorothy Morgan Cancer Center at Lehigh Valley Hospital.

He registered and was then escorted back into the chemotherapy suite.  The entire room ran the length of the building, with a chemo chair in front of each window.  I counted close to fifteen.  My dad was walked back to the 11th chair and sat down.  The nurse inserted his IV line which would facilitate the poison that was going to work for the good to get rid of my father’s cancer.

Then the last thing I thought would have happened, happened.  Rose, his nurse, asked him if he would like anything to eat.  She rattled off a list of items from sandwiches to snacks and beverages.

The first medicines administered were to handle the obvious nausea that may occur.  The whole time, Rose is explaining everything that is happening.  She is a good comforter.  In less than an hour, my father was given the first drug to make sure his cancer went away, and stayed away.  The drug took about 3 1/2 hours to go through the IV lines into his system.  This was the one drug that my father had been concerned about as there was a good chance of having an allergic reaction to it.  That was the bad news.  But the good news was, if he did have an allergic reaction to it, they would know within the first fifteen to twenty minutes, and would be able to respond to the reaction.  After the first half hour, we all breathed a sigh of relief as there was no reaction.  We would just wait for the drug to finish its administration.

Once that first drug was done, on came the second drug.  This would take about a half an hour to be administered, but it did not carry the allergic reaction risk to it that the first drug did.

By the end of the first treatment, nearly six hours later, my dad uttered something I never thought I would ever hear a cancer patient ever say about chemotherapy, and I’m sure not something that is heard every day in the chemo suite, “that actually was pretty good.”

I feel good for my father.  Unlike my first chemotherapy appointment, where it was a race against the clock to get home before I would puke my guts up, my dad felt as if when he had walked through the door of the chemo suite.  The first chemo appointment for him was going to be crucial as he had not made up his mind yet that morning that he was even going to go through chemo.  But once there, depending on how he felt with the chemo, would most likely determine if he would be back for #2.  So far so good.

Then And Now – Final Day Of Treatment


Today’s post is dedicated to a young man in Southern Florida.  I am not using his name to protect his privacy.  I have never met this “kid” in person (at age 23 he is just a kid), only through the internet.  He was diagnosed with Hodgkin’s Lymphoma, just as I, at around the same age as I.  I learned of him as he was completing his second or third treatment.  Tomorrow, he will receive his last treatment.  I will be anxious to hear of his every moment from the impressive milestone.

The day had finally arrived.  It was a week late because the prior week, my blood counts were too low.  The option was to modify the chemo for that week, or delay the treatment a week and see how I feel, or just cancel the treatment all together.  The doctors decided that it was best for me to delay my treatment for one week.  I had done so well up to this point, had gone through 7 1/2 cycles.  I needed this one last set of infusions, and I would have solidified my chances of surviving Hodgkin’s Lymphoma.

That Friday, March 3, 1990 began just like the other Fridays of treatment.  I would go into the oncology office, by myself.  My name would be called twice.  The first time was to do bloodwork and confirm that I could handle going through the final treatment.  I had been cleared.

The second time that my name had been called, it was to walk back to the chemotherapy suite.  As usual, my oncology nurse Brenda was busy setting up all of the syringes.  I sat down in the chair and began to roll up my sleeves.  I was not sure which arm would be used.  I just know that my veins had been destroyed by all of the chemicals that had been used to save my life.

Brenda turned around, looked at me and asked, “you ready?  You have finally gotten here, the end.  This could not have been easy for you.  These are such hard drugs to use.”  I gave her an agreeing nod, and like that, she had already stuck the needle into my arm.  Half of the cycle resulted me dealing with nausea, the second half, did not give me any problems.

And so over the next hour, I received my final treatment.

After the last drip, Brenda began the process of removing the catheter from my arm.  “Now Paul, when you get up from this chair, you have to imagine that there is a marching band playing for you, in triumph.”  My eyes lit up and all of a sudden, I could “hear” the band as I walked down that long hall from the chemo suite, for what I was determined to be the last time.

With the internet today, over 23 years later, internet support groups now make a daily post announcing those who are completing their treatments.  And today, there are pictures of these milestone.  Someone is either holding a sign announcing the date and the event, or many hospitals have a huge bell that is rung each time a patient completes their treatment.  Even more impressive, is that every day, people join the millions of cancer survivors, MILLIONS!  Unlike 23 years ago, I know many of these survivors.

Tomorrow, my friend will complete his treatment, twelve cycles, countless injections.  This is no easy fete for anyone to accomplish.  The physical toll is nothing compared to what the mental toll can take through the whole experience.  From the fear of death, to the frustrations of having ups and downs, and no way to control them, the emotional toll can be brutal.  He was blessed during this journey with having the strongest support than I can ever recall.  As I went through my battle, I remember often the times that I said “I wish I was younger so that my parents could have made the decisions about this cancer for me”.  His mother has been by his side from the first moment.  As a parent myself, I cannot imagine having either of my children have to face such a disease.

But Dude, you have done it!  You have gotten to your final treatment.  You have done it with courage, strength, and determination.  The support of your mother, sister, grandparents clearly played a roll in beating this cancer.  Tomorrow is your day.  Congratulations and this is for you…

“As I continue down the road of remission, I will keep looking in my rear view mirror to make sure that you are still following me.”  This is a quote that I often write to many who recognize such milestone days in their battles with cancer.

It is over 23 years for me.  I wish you the same lengthy and healthy longevity that I have experienced.  Good luck tomorrow.

Your friend, Paul

Excuse Me, I Asked For Mine “Medium”


At one point or another, most of us have called the waiter over, and made a comment about food served to us, that it was not made as we requested.  And we are more than aware of the Youtube videos and television news shows that show what happens behind the scenes of wait staff and chefs who get agitated when a customer complains about the food.

Yet when it comes to the care of a loved one by someone in the medical field, we hush up, like they might do something to us.  What that “something” is, I do not know.  When it comes to food, I have heard stories ranging from sinuses being emptied onto the plate, food dropped on the floor and put back on the plate… it does not matter, as long as the food is cooked the way that we want.

But the example I would like to use, is the medical environment.  I do want to say, that nurses are so overworked, and so understaffed.  This is what I see a major problem.  They are entrusted to care for the patients, but can be bouncing from room to room like a pinball.  A family member who visits regularly, will often encourage their loved one to speak up when it comes to discomfort or pain, but will usually do nothing.  Just like the orange call button will not get used.

I am going to take this to a further extreme.  What happens when the care of the individual requires the extra effort by the caregiver?  And the caregiver refuses just out of convenience?  The situation is a patient that needs assistance in and out of bed (actually all care), asks for help to go to the bathroom in the overnight hours.  But the hired caregiver refuses.  Now the patient instead wets herself, saturated.  Family members are concerned that if a complaint is raised, it will result in the caregiver treating the patient even worse.

What would you do in a case like this?

You make an immediate phone call to the agency and tell them this will never happen again.  The agency will get the message loud and clear.  They do not want any further issue either as it will only turn out bad publicly for them.  But to do nothing is the wrong thing to do.  You must not let the fear of retaliation by the caregiver (should the caregiver’s actions go unpunished to prevent them from happening again).  Just think of the possibilities of not only what they have done to your loved one, but what about others under their care?

If you have no problem asking for your steak to be a little more cooked, or your french fries to be without so much salt (a trick to get fresh french fries by the way), you should have no problem getting your loved one’s needs taken care of.

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