Paul's Heart

Life As A Dad, And A Survivor

Archive for the day “September 19, 2014”

Meet Michael

10469469_593660520744037_4131540052153352777_n Throughout my blog, I have occasionally mentioned a young man named Michael.  Here is his story.

Having been born visually impaired, Michael had faced enough hurdles in his life. But with strong family support, he never faced any other serious issue, barely even a common cold. But early in 2013, after noticing a huge swollen lymph node, which grew quite quickly after a needle biopsy seemed to agitate it further, at the age of 23, coincidentally the same age as I was at the time I was diagnosed, Michael had been diagnosed with Hodgkin’s Lymphoma. He had already begun his treatments when his mother reached out to the Facebook page for information. That is when she found me. We began to exchange messages back and forth in regards to Michael’s care. And for the sake of their family, they were encouraged by the fact that they had found someone who had survived the same cancer for a long time.

I followed Michael throughout the majority of his treatments.  Approximately half-way through his treatments, we “met”.  “Met” is in quotes because we did not meet in the traditional way face to face, but since he was located over a thousand miles away, we used current technology, Facetime.  And there he was.  He may have been 23, but I simply saw someone just too young to have gone through this.  In spite of what he was going through, he had a smile that stretched from ear to ear.  And I thought I knew a lot about lymphoma and treatments.  This kid studied everything he was going through as well.  He would actually recite statistics and information to me about his experiences.

At one point, he even took me along to one of his treatments to show me how different things were from the dismal times that I was treated.  Little did I know at that time, his gift to me would help me deal with the fact that months later I would have to accompany my father into a chemotherapy suite, something I had not done in over 24 years.

I followed Michael through his treatments, his booster shots for white cell and red blood cell production, and an occasional issue with some minor side effects.  After all, that is why blood work is done during treatments to monitor how well your body is tolerating the treatments, and to set the course for the next treatment.  He was finished with his treatments and had been declared in remission.  This young man had made such an impression on me.

I had been working on some other ideas pertaining to “Paul’s Heart” and expanding my public speaking arena, when it occurred to me, that the area where Michael was from, had a huge networking area.  So in effort to investigate those options, I arranged to meet Michael during my visit.  I also participated in a local Breast Cancer fundraiser for the American Cancer Society called “Making Strides”.  What happened next, I do not even have the right to call it a nightmare for me.  I barely knew Michael after all.  Michael, and those who loved him dearly would face a devastating situation.

It was mid-October, and Michael’s mother had been in contact with me about a chronic cough that he had been dealing with for three weeks.  Michael’s mother wanted him to be seen by the doctor, but over those weeks, his doctor simply prescribed antibiotics and steroids to deal with the cough.  I suggested that she take him to the doctor, that it was probably nothing more than some sort of post-nasal drip.  He had not been sick.  The doctor decided to have him see a pulmonologist.  With the appointment scheduled for the following week, all they could do is just wait.  But a couple of days later, Michael’s mother actually called me and said Michael’s cough had grown worse, and it kept him up all night.  There were still days to go until he saw the pulmonologist.  I urged her to take Michael to the emergency room.  A pulmonologist would have to deal with the issue instead of making him wait any longer.  Michael’s mother hung up.  And I just sat, watching my phone for a text message that he had been seen, treated, and would be going home.  Instead, these were the text messages that were exchanged:

“the doctor has seen him”

“they have him on meds”

and then about a half hour later


And that was the last message that I had received for over twenty minutes.  All I could do was pray that there was some other activity going on in the emergency room area, but as time dragged on, I could only fear the worse.  It had to be Michael.

Michael’s mother finally sent me another text.  It was Michael that coded.  They were able to revive him but a bigger problem had been discovered.  It was not his lungs that were causing the problem, it was his heart.  The chemo drug Adriamyacin, had damaged the left side of his heart that it was no longer able to pump blood efficiently.  I believe the number was less than 15%.  This drug has been known, to have this rare side effect, but there is no monitoring for damage during treatment, only before (for a baseline), and at a follow up post treatment which had not even been ordered.

Due to the complications of his cancer care and the involvement of Michael’s heart, the local hospital was unable to go any further with treating Michael.  So he had to be flown by helicopter to a hospital two hours away, that would be capable of handling such an extreme cardiac situation.  To save his life, they would need to put an artificial pump in Michael to do what his heart could no longer do.  And since he could not be considered for a heart transplant because he had just completed his chemo, Michael was going to have to live with this for at least five years until possible consideration for a transplant.

His family stayed by his side for over a month, sacrificing work and home just to see that Michael recovered.  There were struggles, but just before Thanksgiving, Michael got to go home.

Three weeks later, an issue developed with the pump, causing another emergency airlift back to the hospital, as their local hospitals were not equipped to handle such cases.  The pump had failed and would need to be replaced again.

Out of respect for the family, I am not discussing any further details.  Just barely into the new year, Michael, at the age of 24, lost his battle, unable to recover from all the trauma to his young, tiny, fragile body.

The drug that caused this to happen is an anthracycline, and though it does not happen often, it does have documentation of causing damage to the heart muscle.  But perhaps even more puzzling, is why did the damage hit Michael, and not me, or the hundreds of other people I personally know who have been given the drug.  But since we cannot determine who is affected by the drug as severe as Michael, I have made it my personal wish to his family, that I will push as hard as I can, for surveillance when this drug is used.

A simple ultrasound performed at the latest, midway through Michael’s treatment regimen I feel would have shown results different from the baseline scan that had been done.  At that point, that drug could have ceased to be used, at the least modified, or even a different treatment regimen could have been ordered.  We monitor bloodwork to see if our body is up to the next treatment.  Why do we not do it for a body organ that may have the potential to be affected, like the heart?  I do not want to hear that it is not cost-effective.  Tell that to the family who lost their son and brother.

Do not get me wrong.  Adriamyacin is a good and effective drug to treat Hodgkin’s Lymphoma.  But it is dangerous.  And as the telethon Standup2Cancer demonstrated last night, we need to find better and safer modes of treatment.

In memory of Michael, and on behalf of his mother and father and sister, I ask you to share Michael’s story.  Help to push for better surveillance for side effects that may not seem so obvious on the outside of the body.  It was decades before my side effects were recognized what damage the drugs had done.  But at least I got to live my remission.  Michael did not get to live more than two months post treatment.  I would have given anything to trade places with Michael to give him that shot at life.

In closing, I want to stress, what happened to Michael is not the norm.  I know plenty of other survivors who have not had any issues.  But I tell this story in hopes of preventing another parent from having to shed tears for a life gone too soon.

Cancer – Dear Diary

This is probably one of the most important, and valuable posts I am going to put on “Paul’s Heart.”  It is not bad enough that a patient has so many things to see, listen to, and think about.  But I am going to give you a suggestion not only to make it easier for you, but make a difference in not only your current care, but future care.  It is no longer good enough just to have a second set of ears or eyes with you at your appointment.

From the moment that you even suspect cancer, it is time to start writing things down.  Making note of your symptoms, your daily routines, and reactions are all critical when it comes to helping your care staff treat you.  But it goes further than that.

Of course you should always take lots of notes right from the first visit.  If you have questions, write them down.  Do not wait until your appointments because your train of thought can easily be derailed if a conversation goes in a different direction than what you were anticipating.  I do not care if you fill up ten sheets of paper with questions for your oncology staff to answer, if you have questions, you deserve to have them answered.  And I will tell you why.  You, YOU are a member of your treatment team.  You need to take part in your diagnosis, treatment, and survival.  Everything is going to happen to you.  You have the most important say.

The next thing you do, and will be the easiest to maintain, compile your own medical record.  Get a notebook binder, and after each appointment, after each blood test, every scan, every specialist, ask for a copy of your record for that appointment.  Most will not charge your for this.  Why do you want to collect what your doctors will have on file?  Because, the first time that you are sent to another specialist for any other reason, you want to have all of your records available for that new physician.  I know.  In the days now where everything is paperless, there can still be delay, or worse, systems can be down.  This can be detrimental when treatment timing is so critical.  Imagine, being able to walk into a doctor’s office, and being told that another appointment will have to be made, while records are obtained from other doctors.  But instead, you either pull out your binder, or if you are technically advanced (which I am not), a zip-drive and can supply that information immediately.

But another reason to keep these records, there may come a day, when other issues might arise.  Perhaps you need to apply for Social Security Disability or other reason.  Words cannot express the frustration you will have compiling everything, if you have to do it right from the beginning, gathering everything, from every office you have had appointments with.

I will give you one more example.  And perhaps one of those “I wish someone had given me that advice” moments.

Following my open heart surgery, courtesy of my radiation therapy damage, and it became clear that I was having other issues related to chemo and radiation long term, I had to venture into a whole new arena, long term survival care.  After finding a specialist clinic, in my case Memorial Sloan Kettering Cancer Center, the very first thing they asked me for, were my records.  I felt this would be an easy task as there were only two places I had treatments, one for chemo, and the other for radiation.

Turned out, my chemotherapy and office visit records had been destroyed by a fire.  The cynic in me thinks that was a fancy term for incinerated as I had not seen them in so many years, to lighten their load, the burned my files.  Fortunately my radiation records were still available, though this was probably due to regulatory reasons.  But by not having my chemo treatment records, the doctors I was going to see, were now going to have to estimate my treatment records based on protocol used back in the 1980’s.  Exact was not going to make that big of a difference because of the particular drugs used, any dose was going to be harmful to me long term.  But the point is, half of my records were no longer available.

Now, after six years of surviving my near-death heart episode, and in the long term survivorship program, I have a backpack, filled with paperwork from every doctor, every test, every visit I have made since that day.  It weighs about eighteen pounds which is why I really need to get tech savvy and put it on some sort of disc.  But the point is, every new doctor I see, either by plan or by emergency visit, I have everything at my disposal to help that treating physician deal with me, a very complicated patient.

Now of course, I cannot carry this backpack with me everywhere, all of the time.  So I wear a medic alert bracelet, that lists the following information:  my name, abbreviated history, and on the back, lists my doctor’s name and phone number, and the instructions, “see wallet for important details”.  In my wallet, I carry two laminated cards.  One card is an abbreviated history of diagnosis discovered, and the other is probably the most important warning, that I am asplenic.  I have no spleen.  This is important because as I am taking to a hospital, where germs and bacteria thrive, my immune system is compromised by not having a spleen, and preventative measures need to be taken to prevent me from contracting an infection of any kind… which with great ease could turn septic, and fatal for me.

As a patient, we have so much on our minds, and things can easily be forgotten.  If I give any advice on this web site, I consider this post to be one of the most valuable.  Keep records of your cancer journey – and that goes beyond treatment and remission.  You never know when you will need them.

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