Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Education”

Chemo Cat


chemo-cat

*** author’s note***  Each year, I compose two stories to be submitted to Visible Ink, a writing program through Memorial Sloan Kettering.  The stories are published in an annual anthology consisting of other stories as told by other cancer patients and survivors from MSKCC.  Each other in general gets one story published per year.  I will post the other story when the book is published, but for now, here is the story that was 2nd place for me.

Emotional support comes in all forms when faced with a serious illness like cancer. When it comes to humans, that support has its flaws. People can be moody. Some can be “two-faced”. Co-workers often express jealousy as if the cancer patient is receiving favors for their battle with life. Family members may find themselves distancing from their loved one.

Animals on the other hand, offer unconditional support. Many times, fur friends may be aware that you are not feeling well, long before you do. It is this type of companionship that led to the concept of “therapy pets.”

Even on our worst days, when we come home from a long day, a dog more likely than not, will approach you excitedly with tail wagging, not even an accusational glare as to where you had been that entire time. And cats also, will snuggle up to you if they so choose.

Shortly after I had been diagnosed with Hodgkin’s Lymphoma, besides selecting my medical care and direction, I made the decision that “pet therapy” would be a part of my cure. I lived in an apartment. Dogs were not allowed, but for a $25 fee, I could have a cat. I went to the local animal shelter, adopted “Pebbles,” a white female calico.

During the initial days of my diagnosis, she spent a lot of time on my lap, as I tried to gather my thoughts about the next days.

But it was not until I returned from my honeymoon, that new disease had been discovered, I would have to undergo chemotherapy. My wife went with me for the first chemo appointment. It was a 25 minute ride, which ended up being a critical detail to keep in mind. This was the amount of time that I had, to get home, get up three flights of stairs, race to the toilet, when nausea would finally make its presence known. That first day, I did not make it. My wife had driven too slow. There were too many traffic lights.

For the next fifteen treatments, I would be on my own. Knowing that nausea would hit me while driving, I ignored speed limit signs, accelerated at yellow traffic signals. Each appointment, I was consistent in getting to my apartment building, racing up the stairs, opening my apartment door, zoom past Pebbles, flip the seat of the toilet up, my body did the rest. After the first wretch, each time, I would glance over to the left, and there was Pebbles, just sitting in the doorway, watching me. She did not greet me as she normally would have on any other day, rubbing against my legs as I stood in the doorway. Pebbles knew my current situation was not normal.

Approximately a half an hour later, after I was certain that my nausea had ended, I had definitely hoped so because I was exhausted, I stood up, closed the toilet lid, washed my hands, my face, and brushed my teeth. I crawled into my bed, and passed out. I would wake up several hours later, upon my wife entering the apartment. Each time that I awoke, I looked over to my wife’s pillow, there was Pebbles, curled up and asleep also, clearly had been watching me when I crawled up into bed. My “chemo cat”, as I often referred to her from that point on, had actually been watching over me, keeping me company until my wife had come home from work.

Decades later, I would have several more pets, as I was challenged once again with severe health issues, pets were there for me every time. My biggest fear however was following heart surgery, with a freshly repaired breast bone, being greeted by my 100-pound Golden Retriever. It was not uncommon for him to stand up on his hind legs to greet me. This time, as if he sensed my fragility, simply sat right by my side, waiting for me to pet him. That is where he would stay as I recovered at home.

Today it is very common to see pets in chemotherapy suites and hospitals. The emotional healing power of pet therapy has been proven to lift the spirits of people who are ill or hospitalized. In two recent hospitalizations that I experienced, I had numerous visits from furry friends. After missing my own fur friend at home, my spirits were definitely lifted.

When my father went through his own battle with lung cancer, the very first day of treatment, he was greeted by a Goldendoodle, who simply rested his head on my dad’s lap. This was just one of the new changes in the atmosphere of a chemotherapy suite, which definitely has an impact on the psyche when dealing with such a difficult time period.

If My Survivorship Will Mean Anything… Part 2


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This was Michael.  You can read about his story on the “Paul’s Heart” page titled, “Michael.”  There I go into more details of his story, as this post is about a promise that I made to his mother, following his passing.  I was going to find some way, some how, to get some very important information out to the general public, since medicine seemed too slow to do, to prevent another tragic ending, like Michael’s.

michael-1

I have met many other survivors over my decades of survival.  This photo is the first meeting I had with Michael (along with his mother).  Michael had just completed 12 rounds of chemotherapy for Hodgkin’s Lymphoma.  I had already been planning a trip to Florida to launch a campaign of survivorship speeches, in celebration of my upcoming 25th anniversary of beating cancer.

I had known Michael through the majority of his treatments, communicating via Facebook, emails, and Facetime.  In fact, though he had been getting emotional support from me, it was actually him who would help me deal with a critical situation when my father was diagnosed with his own cancer to be dealt with.  Michael had included me on a lot of his chemotherapy treatments via Facetime.  And when it came to dealing with my father, I was actually better prepared as his caregiver to deal with some of the newer situations of treatments.

Over those 12 treatments, I do not ever remember knowing another patient who carried the outlook, the desire for the knowledge of what he was going through, and the ability to carry his family through the emotions of a cancer journey.

But just as I hinted before in prior posts, and on the page “Michael”, the one drug used to treat him, just as was used on me, and the majority of Hodgkin’s patients, had caused a reaction that was already known to have the potential to do so.

adriamycin

This is Adriamycin.  It is and has been, the go to chemotherapy drug for battling Hodgkin’s Lymphoma.  And this is where this post is directed at everyone else.  Because this drug is now being used to treat other forms of cancer as well.  And while Hodgkin’s is considered a rare form of cancer by comparison, this drug is now being used to treat breast cancer, which affects millions more patients.

For those of us who have been exposed to this drug, many of us call it, “the red devil.”  And I want to clarify and state clearly, I am in no way trying to convince anyone to be against the drug.  Quite the contrary.  I am alive 27 years later because it did get me into remission.  But there is a small percentage of patients who develop a very serious issue because of this drug.  And with the inclusion of treatment for breast cancer, that percentage I am sure will climb.  Admittedly, this drug is successful.  And it did give Michael the declaration of “remission.”  When the picture above was taken, he was two weeks past treatment.

No, the warning of this post is not about the drug.  The drug is necessary until something better and safer is discovered.  But the seriousness for the side effect, no matter how small the percentage, is not taken seriously enough, world wide.  Protocols are now being established for follow up testing during treatments, as opposed to “baseline” studies done prior to the beginning of treatment and at the conclusion.  Because as the next parts of the this post will show, the technology is there, to make sure that in spite of the dangers of this drug, monitoring of the side effects of this drug are possible.  But the trick is getting every oncologist on board with just this simple technology that I am going to introduce you to shortly.

The Childrens Oncology Group today clearly states, what medicine did not decades ago, that the use of anthracyclenes have the potential to cause cardiotoxicity including but not limited to congestive heart failure.  COG has also written guidelines on the dosages to be used and frequency based on age and size, to be adjusted as necessary.  But only recently has it been discovered just how early heart damage can be detected and by what technology.

This technology was not being used by the oncologist that treated Michael.  It is not known if the oncologist was even aware of the technology or was just aware of the apparent low risk involved.  Michael was not known to complain about discomfort, but clearly, something was wrong.  And other than the baseline echo that had been done prior to the start of treatment, and the echo that he never got to have the opportunity to have done, there was nothing done between those times.  And today, is the third anniversary of Michael’s passing at the age of 24 from Hodgkin’s Lymphoma.

Knowing now what I know today, I believe his death could have been prevented.  Yes, Adriamycin is the top choice to get a Hodgkin’s patient into remission, and now it seems a choice for breast cancer.  But precautions and follow ups must be taken and done, to make sure that if something is going wrong, perhaps a different mode of treatment, or at least the modification of the drug, can be done, before it is too late.

Please share this post as this story continues.

 

If My Survivorship Will Mean Anything… Part 1


  • Author’s note – if you, or anyone you know has received an anthracyclene type chemotherapy, like adriamyacin or doxyrubicin or others, regardless of the cancer, the following post is very important for you.

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I am coming up on my 27th year in remission of Hodgkin’s Lymphoma.  For many cancer survivors, reaching the 5th anniversary is a big deal.  But as any cancer survivor will tell you, being able to meet someone, who has beaten the same type of cancer for a much longer period of time that they have experienced the same cancer, it is really a big deal.  I cannot speak from the survivorship perspective of other cancers other than my own personal experience with Hodgkin’s Lymphoma.  I was treated with 4 times the lifetime maximum of ionized radiation.  Mention this fact to anyone working in a nuclear power plant, and forget a doctor understanding the severity of that statement, a power plant worker knows that even they are not experienced to that much radiation.   I was treated with some very bad chemotherapy drugs, poisonous, destructive, not only to the cancer cells, but to healthy cells also.  Fortunately, the modes of treatment I underwent, have been replaced by a better understanding, better treatments, and better follow up guidelines.  But is it 100% better?  Hardly.

As survivors like me began to live longer passed our expectancy, we began to develop late term side effects from the treatments we received.  The bad part is, medicine was not prepared for this.  Research had not been done on long term survival because cancer survivors were not expected to live long enough to develop those late effects.  Survivors like me, became guinea pigs, human “lab rats” for studies to see, just what went wrong, though it resulted in long term survival, and what needed to be changed.  Only a handful of us Hodgkin’s survivors percentage-wise are aware of the many issues that we suffer from cardiac to pulmonary, muscular to skeletal, gastrointestinal to endocrine, psychological, secondary cancers and more.  The rest have no idea why their young bodies have degenerated the way they have, often with symptoms undiagnosable, and definitely not relatable to someone of a younger age than considered normal.  In fact, as I write this, one of my closest fellow survivors is currently in the hospital, being treated yet again (well over 50 different incidents) for an unknown medical emergency, clearly related to her treatment history.

I would love to tell you that in the 27 years since my treatment, medicine has learned more about survival and better cancer treatments and follow up protocols.  But the truth is, only a small amount of medicine is aware of such.  The majority of updated technology and information is limited to the larger cancer facilities along with guidelines established by the Children’s Oncology Group, which now clearly lists the risks associated with each treatment option.

This post, actually being written in 4 parts, is going to be the legacy of “Paul’s Heart.”  Because as you will read on, this story is not just about one survivor, one death, one particular cancer, but for many other cancers as well.  With this post, I am going to going to make my survival count.  I am going to make my survival make a difference.  I am going to keep a promise that I made three years ago.

michael-2

I am asking you to please, continue on with the remaining parts of this post.  Please “share” this story on your own Facebook page, group, Twitter, whatever social media you deal with.  The information I am going to share with you, is going to make a difference to someone you know.  Medicine is not catching up quickly enough, as you are about to read.  But with your help, we are going to help change that.

Please continue on to Part 2.

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