Paul's Heart

A Child’s Innocence Lost

I noticed something the other day about my daughters.

When I was a young boy, my grandmother used to take me to visit my Aunt Helen and Uncle Frank.  They lived on a farm in Quakertown.  They lived in a huge old farmhouse  which was easy to get lost in trying to navigate through it.  Outside there was a large barn, swarming with cats.  And of course, lots of farming equipment.  Perhaps it was one of those pieces of equipment was responsible for the hook that my uncle had to wear on his right arm.  All I know is that I was petrified of visiting him and he had no problem reinforcing that fear by pointing and waving his hook at me.

That kind of fear is a normal reaction.  As a child, it is normal to be curious, yet also afraid at conditions that are different from what we are used to.  It could be an amputation, deformity, a tic.  The reaction of a child is most likely going to be a stare at minimum.  I do not recall anyone else in my family that had to deal with any physical or emotional handicap.

I cannot say the same for Madison and Emmalie.  At the ages of five and three, the girls would witness the most difficult image in their short lives.  My heart surgery was the first time that I had been away from my daughters,  It was three days before it was felt that I was strong enough to be able to handle the emotions of a visit from them, and the majority of the machinery that I was attached to had been removed.  The only things that remained were an IV line in my arm, catheter, some drainage tubing from my abdomen, and a port that had been placed into the side of my neck which actually had several lines going through it (I do not recall exactly where they all went, but one went directly to the heart to measure “true” blood pressure, and I believe another was some sort of defibrulator).

I missed them so badly.  The last time that I had seen them, I was under the impression that I was just going in for a routine catheterization and stinting for a blockage.  I told the girls “I will see you tomorrow.”  Tomorrow never came.  So when Wendy brought them in that Sunday, I could not wait for a hug from each of them.  Instead, Madison slowly creeped up the bed, seemingly tracing her movements along the tubing so as not to damage them or hurt me.  Emmalie’s reaction definitely caught me off guard, fear.  It would be another two days, when the tubing would be removed, before she would even come near the bed.  As much as I expected this, it was still sad for me, that the little girl I held for two years was frightened not necessarily by me, but rather the situation that I was dealing with.

Over the years, they would witness “daddy in the hospital again” which of course meant more wires, more tubes, and more time away from home.  But now when I go into a hospital they understand that I am going in there so that I can get better.  And I will be home.  At least fortunately, that is the way that it has been so far.

A couple of years back, I had a very close aunt take a nasty fall, and as commonly happens, the fall leads to complications which in turn, resulted in her passing.  Prior to this event, I had received a phone call that it was not looking good for her, and that I may want to stop by the hospital.  My family was on its way home from a day trip, so everyone was with me.  My mother greeted me and I asked her if she could watch my daughters while I go in and give my last respects to my aunt.  When I came back out, my mother asked, “Don’t you want to take the girls back to see her one last time?”  I felt that was a morbid thing to ask.  Wendy and I have had discussions that we will not keep things from the girls, but when they do learn of certain topics, it will be when we believe they are ready.  Which in this case, I did not think the girls were ready.

Another thing to take into consideration was the fact that the hospital played a major role in our decision.  I have spent a lot of time at this particular hospital, including for my heart surgery.  My children recognize this hospital as “daddy’s hospital”.  It would not take much effort on my oldest’s part to put two and two together, associating my aunt passing away in this hospital (after having just visited), and then being worried about me not coming home ever the next time that I would land in the hospital.  And that is exactly what would happen.

Sadly, my aunt did pass away later that weekend as we had been prepared for.  And my daughters were told that she had passed away, but there was no mention of the hospital.  Since this time, there have been more hospital visits for me, and my daughters are able to just pass it off as, just another thing.  I had never really thought about the impact all this had on them until the other day.

My brother-in-law was battling Lou Gehrig’s Disease.  The time had come, that a decision needed to be made to insert a feeding tube in order to get nourishment.  His ability to swallow and not choke was nearly completely gone.  A stomach feeding tube was the only way for him to keep wait on, and get the proper nutrients.  The girsl had known for quite some time that Uncle Mike was very sick.  We never talked about him dying, even when he got the feeding tube inserted.  This one day during the past summer, we were all outside his house, by his pool.  He had come out to join us poolside, and had taken his shirt off for some sun.  And there it was in plain sight, his feeding tube.  But my daughters just continued to swim around even running past Mike a couple of times, without noticing the tube.  Even when it came to meals, Mike sat with us at the table, poured his meal into the bag, connected the tube and hung the bag on an IV pole.  My daughters sat next to him, and never mentioned this, never stared at it.

I feel that all of my health issues have desensitized my daughters.  They should have at least been curious about the tube that disappeared into “Uncle Mike’s belly.”  I was horrified by my uncles hook.  Frequently you can see small children staring at amputees in wheel chairs or those with Downe Syndrome.  On one hand I know Mike was comforted by the fact that neither of them treated him any differently toward the end like the rest of us adults.  But I still could not help but think how sad it is, that all of my health issues have had an effect on that innocence.  On the plus side, they are very strong when someone needs the “it’ll be okay” hug.

Progress

The best way to define “progress” is to use the words advance or develop.  In the world of cancer and cardiology, we look and hope for progress in the diagnostics, treatments, and survival.  We hope in our lifetimes to see more advanced technology to pinpoint every cancer cell or to gauge the walls of an artery.  We want less toxic and less dangerous modes of treatments that produce less side effects, short term and long term while producing an increased rate of longevity.

When patients and families hear that how long that I have been in remission from Hodgkin’s Disease they express many emotions ranging from surprise to hope and inspiration.  But when they hear that I have to deal with late secondary issues, those expressions turn into despair, frustration, and sometimes, surrender.

I will not tell you that a cancer diagnosis or a heart diagnosis is a good thing.  But how they now get to those results are amazing.  A favorable prognosis is often more predictable from earlier detection with advanced technology.  Survival rates have been climbing steadily.  This, is progress.

My earliest memory of cancer, goes back maybe 35 years ago.  I believe the movie that we watched in school was called “The Terry Fox Story”.  Stereotypical story line for those times, diagnosis, sick as hell from the chemo, only to die anyway.  “Brian’s Song”.  “Terms Of Endearment”.  All great movies but unfortunately when it comes to the portrayal of cancer patients, were not real encouraging.  Television shows also were prone to the stereotyping of cancer.  And print media also failed its readers as stories of celebrity deaths from cancer sold more copy than survival stories.

But my first exposure of success in defeating cancer actually came from home.  My grandmother late in her sixties had beaten breast cancer.  Three years later was when I was diagnosed with Hodgkin’s.  Believing the odds were against me, after all, it was cancer, I chose to go with what worked.  I called up my grandmother’s oncologist.  Dr. M is who I would challenge to make sure  that I saw many “tomorrows”.  And so far, it has been 22 years worth of tomorrows.  But this post is not about my success in survival or struggles with late side effects.  I would like to tell you of the progress that I am aware of in just over two decades since I was treated.

Diagnostics alone has made the most progress as many of the testing, biopsies, and other procedures are no longer done.  Gone are the lymphangiogram and laparotomy for the most part.  I hardly hear of bone marrow biopsies any more.  New technologies allow less invasiveness, quicker diagnosis, and earlier response which in most cases should result in better odds of remission.  The laparotomy involved removing the spleen, something so common not just for cancer, but other events as well.  Today, medicine now recognizes how important a role the spleen plays in not just immunity, but even for cardiac issues, like heart attacks.

Radiation treatments have changed dramatically also.  Researchers have found that doctors can do more with less.  Instead of laying on a table and being exposed to a “scattered field” of radiation (in other words, the radiation hits more than just the tumors but surrounding areas of the body not needing radiation), exposure to levels of radiation more than four times the lifetime limit, the radiation doses are much lower and more exact to the area that must be treated.  This has greatly reduced short and long term side effects from radiation.

My chemotherapy cocktail is now hardly ever used.  One drug was so toxic, that in another form, Sadam Hussein had used it on his own people.  Another drug was notorious for doing damage to the lungs, and another to the heart.  Steroids were taken to build up immunity and muscle mass that was lost due to cell destruction from the other drugs, only to cause orthopedic issues in me.  Drugs used today may still offer side effects, but they are less severe and many with the same success or better.

And ports?  I never had them.  I got stuck so many times, I hardly have any usable veins, not to mention a huge phobia and anxiety dealing with needles.  Dealing with nausea, there are so many anti-nausea medicines out there to help besides Ativan, some last a long time.

And most importantly, follow up care.  There is an established protocol to be followed depending on the treatments that were given.  Things are much easier to be dealt with when caught early.  Some tests may be done annually, some maybe as far as five years apart.  Preventative steps may be taken as well to help boost immunity such as flu and pneumonia vaccines.

I am a 22 year survivor of Hodgkin’s Disease.  I submit to you, I have seen so much progress in diagnosing and treating not just the cancer that I had, but so many more.  And I will tell you, I personally know of other survivors who have passed 50 years of survival and were exposed to much worse treatments and diagnostics that I was exposed to.  So as you read my posts, know that research is doing all it can to improve medicines, diagnostics, and longevity.  Programs that raise awareness and funds such as the Relay For Life, Livestrong, and Stand Up 2 Cancer, and my personal favorite, the Leukemia/Lymphoma Society have made opportunities even greater.

I have long used an expresession to offer hope for all cancer patients and survivors.  “As I travel down the road of remission, I will keep looking in my rear view mirror to make sure that you are still following me.”