Paul's Heart

Life As A Dad, And A Survivor

I Found Another “One”

“One person can make a difference” is probably the most commonly shrugged at phrase used in the English language.  One person so far has never made a difference in an election (though clearly, if enough “one person” voters showed up, who knows what the results might be.  When it comes to fundraisers, look at the overwhelming response to the “ice bucket challenge” for ALS, started by one person.

In the world of lymphoma, I have always been a believer that one person can make a difference.  That is one of my drivers behind “Paul’s Heart.”  Look, when it comes to cancer, breast and lung cancer get the majority of the attention, while lymphoma (and other blood cancers get very little).  September is National Lymphoma Month and National Blood Cancer Month.  And while the very well recognized Leukemia-Lymphoma Society is well known to me, as well as other blood cancer patients, the LLS does not have the notoriety of the American Cancer Society.  While the ACS holds events such as Making Strides For Breast Cancer and the Relay For Life, raising hundreds of millions of dollars, the LLS during its recent national Facebook campaign for the month of September, just passed the $300,000 goal, to me personally, a disappointing amount.  But again, not many people are familiar with the LLS and blood cancers.

It is hard to fathom, with all the attention towards the big things like ALS and more familiar cancers, that even the introduction of a rare cancer, and a simple fundraising drive, like, Light The Night, would be just as successful.  But the truth is, because Lymphoma is so rare, it does not get the attention that other cancers get.  Sure, plenty of celebrities have faced Lymphoma.  I will not mention them in this post as I have already listed many famous people earlier this month in a post titled “The Faces Of Lymphoma”.  And with all of those names listed, no one still seems to pay attention to the research needed to find better and safer treatments for Lymphoma.

But another aspect that I hoped to raise, as one person, was the need to recognize developing side effects, both short term, and in my case, late term.  Again, these things that have happened to me, and many others, are indeed rare, but without awareness that they exist, how will medicine ever realize more needs to be done for lymphoma survivors.

This morning I had the pleasure of having breakfast with someone who I consider another “one person trying to make a difference.”  As occasionally happens with lymphoma patients and survivors, cardiac symptoms are something that really need to be paid attention to.  But other than a few select late term clinics such as Memorial Sloan Kettering, MD Anderson, Cleveland Clinic to name a few, the average hospital and too many oncologists, while recognizing the side effects of anthracyclene drugs, in spite of their success in treating lymphoma, have a toxicity to the heart and its pumping ability.  I have been beating this drum for a long time, not just from my own experience, but also, as many of you have read, in “Meet Michael”, the young man who died at the too young age of 24 after successfully getting through treatments only to die from the side effect of the drug Adriamyacin, an anthracyclene.

But who am I to draw attention to this?  I am not a doctor.  I am just one person trying to make a difference to include a simple ultrasound, or some other screening, that when using a drug, that is known to have even a minimal low percentage chance of affecting a body organ, that some sort of surveillance is done on that body organ, not just for baseline at the beginning, and at the end of the treatment.  Because as was written about Michael, he had never even gotten to his post treatment surveillance.

So, one person, me, met another one person.  I must admit, I found myself choked up several times as he explained the technology that he has, is trying to get recognized, and used to follow the toxicity effects on the heart from the drug class of anthracyclenes.  He explained to me that with his technology, he is able, via 3D technology, be able to look at 90% of the heart, including the inner wall and its movement.  In other words, he has the ability to see damage to the heart, before it becomes too great.  In other words, there is the potential to modify or change treatments, and not only save the heart from possible permanent damage, but caught early enough, the opportunity to allow the heart to recover.

It is a lot more complicated than what I just described in the last paragraph.  But bottom line, I have found another “one person.”  One person trying to make a difference, and I believe he will.  He has the tools and the knowledge.  Now he needs the awareness and the support.  I want to be “one person” for him, to help him, which ultimately will help many cancer patients.

One person can make a difference.  One person will make a difference.

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