Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Side Effects”

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 3


What I am about to begin discussing is not conjecture, it is fact.  It is scientifically proven.  Only recently has medicine realized that closer follow-ups need to be made regular protocol to prevent damage not just from anthracyclenes, but any treatments.

In my time of treatment, there was not follow-ups other than bloodwork during my treatments.  If my counts were too low, the treatment was either reduced, or delayed.  But that was it, just bloodwork.  No other testing of any critical systems of my body.  And once I reached the magical 5 year mark, I basically vanished from the world of oncology until I was diagnosed with a “widowmaker” heart blockage caused by my treatments 18 years earlier.

At least in major cancer centers, today, patients are getting the “baseline” studies done prior to treatments, and depending on the drug being used, follow-up studies during treatments, and of course annual follow-ups following the conclusion of treatments.  And this is for life.  Finally, after realizing that Hodgkin’s survivors were living long enough to develop late effects, medicine finally had to learn how to not only recognize us, but how to treat us.  Sure, treatments have gotten better and a bit safer, but there is still a long way to go.

Now, I would like to introduce you to Bill Shirkey.  I got to meet Bill shortly after Michael had passed away.  Bill is the director of cardiodiagnostics and cardiac imaging at the Naples Community Hospital Heart Institute, associated with the Mayo Clinic.

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I sat down with Bill to discuss the exciting and lifesaving technology that he has studied and uses to help prevent issues such as damage from cardiotoxicity from chemotherapy as well as other health issues.  I am also going to try and upload the video of demonstrations that he gave of the equipment used, and how it works.  If I cannot do it in this format, it will be uploaded to the “Paul’s Heart” Facebook page.

Paul:  What was the result of your studies?

Bill:  The development of a protocol for oncology patients receiving cardio-toxic chemotherapy drugs.

Paul:  Please describe the equipment you use and its accuracy.

Bill:  The Phillips EPIQ 7.  There is a high degree of sensitivity.  It is the top machine for this type of work on the market.

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Paul:  What are the benefits of this technology?

Bill:  We can predict cardiotoxicity in the early stages before there is permanent damage, and can help guide therapy modifications or changes.

Paul:  How soon can damage be recognized with this technology?

Bill:  A few months after therapy starts.  In some cases, as early as following the first dose in the case of anthracyclene drugs like Adriamycin.  The damage to the heart muscle can be seen as soon as the first or second treatment, and dealt with before the danage to the heart is too severe or permanent.

Paul:  While this is a definite benefit to current or new patients, is there a benefit for long term cancer survivors who are decades out in remission?

Bill:  Yes.  3D echo would give an accurate size and ejection fraction.  Strain would indicate myocardial performance.  It would help guide therapy if needed or establish if patient is clear cardiac-wise.

Paul:  Who else is using this technology?

Bill:  We are the only site in Naples using this technology.  Only some oncologists are aware of this technology.

Paul:  How expensive of a test is this?

Bill:  Generally around $1500-$2000 which is much better than the cost of medical intervention for severe heart damage.

Paul:  Are there any harmful effects of the test itself?  How long does it take?

Bill:  There are no harmful side effects of the test itself.  Baseline testing takes approximately 30-35 minutes with follow-up testing around 20 minutes.

(it should be noted, Bill actually demonstrated the machine for me on himself to show how it worked)

The videos of demonstrations and interviews cannot be uploaded on this blog.  I will post them on “Paul’s Heart” on Facebook so that you can see these for yourself.

Please, “share” this post.  With Adriamycin being used to treat not only Hodgkin’s Lymphoma, but also breast cancer, this information and knowledge is crucial.

 

If My Survivorship Will Mean Anything… Part 2


michael-2

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.

 

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