Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Education”

06 Sep 2014

Standup2Cancer


This evening a special annual telethon was held, Standup2Cancer.  It is a one hour, uninterrupted telecast, broadcast on nearly every network.  The goal of the program is to raise money for the accelerated research programs for cancer cures.  This has become such a huge event, that “watch” parties are now being held.  Tonight, here in Naples, a special watch party was held by the local Relay For Life committee at a local establishment, Bokamper’s.  I was invited to be a guest speaker during the program before the telecast.  Below is the speech that I gave:

“I want to thank the American Cancer Society for inviting me to speak a few words as a cancer survivor. I am so excited to be here tonight. No, really, I am really excited to be here tonight, as anyone who has ever battled cancer will echo those sentiments. But I am really excited tonight because tonight is about an opportunity to Stand Up 2 Cancer.

We are so close to curing so many cancers. But just like the saying goes, “close only counts in horseshoes and hand grenades.” One of the main obstacles that stands in the way of finding cures for cancer is funding for research. There just simply is not enough money to fund research for all cancers, and so, many people will never get an opportunity to stand in front of you to tell their stories as cancer survivors.

So how close are we to finding cures? Conversations are no longer dominated by terms such as life expectancy, but now include the words prevention.

In 1988, I was diagnosed with a rare form of cancer, Hodgkin’s Lymphoma. This particular cancer makes up just 1% of cancer diagnosis. Yet today, it remains one of the most treatable forms of cancer with a success rate of over 85%. But you see, it still is not 100%. And that is where we need an organization like Standup2Cancer. Standup2Cancer raises funds with 100% of all monies raised going to accelerated research programs to help find cures for cancer, when other moneys for research just are not available. Funding for research for Hodgkin’s Lymphoma barely exists and is rarely questioned because of the success rate of current treatments and the rarity of the cancer. But for 15% of the people who do not survive HD, this is unacceptable. 15% means there is still work to be done. But the money for research has to come from somewhere.

Of all the struggles I have dealt with as a cancer survivor – severe late physical side effects, financial, relationships, fertility, discrimination, employment, emotional – survivor’s guilt has been the worst for me. Why do I get to stand in front of you, when so many I have known and met over my life, do not get to stand in front of anyone? Cancer has decimated my family. My grandmother died from 2 separate battles with breast cancer and ovarian cancer. I lost my sister to Leukemia. This past May I said goodbye to my father after battling lung cancer. But for me, no greater guilt exists for me, and pales in comparison to the pain and sorrow felt by the mother of a friend of mine, who lost his battle with Hodgkin’s Lymphoma this year at the age of 24, because the current mode of treatment, while curing 85% of the people, just was not safe enough for him. He received no radiation therapy and half as much of the chemotherapy that I received. This 15% is not acceptable to me which is why I proudly support the efforts of Standup2Cancer. We are so close to finding a cure, not just for Hodgkin’s Lymphoma, but safer treatments as well, and cures for other forms of cancer.  And it all starts with you.

I am living proof. The first time and the only time I ever heard the word cancer was when someone died. That was over 40 years ago. I was treated with enough radiation, that I could have eaten off the floor of Three Mile Island after the meltdown and not have been exposed to as much radiation. I was treated with a drug that was used by a middle eastern dictator to kill his people, but it treated cancer. Physically, my body has its share of late effects that came about in exchange for me surviving cancer. But I am here to tell you, progress has been made in the 24 years since. It just simply is not good enough. But after tonight, we get closer to a better and safer cure because of each and every one of you. And in memory of my friend Michael, I thank you.”

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
04 Sep 2014

Faces Of Lymphoma


September is National Blood Cancer Month, National Lymphoma Month, National Childhood Cancer month also.  These three annual recognitions actually tie in with one another, as lymphoma is often recognized as a childhood cancer.  Of lymphoma, and which I can personally speak of, Hodgkin’s Lymphoma is such a rare cancer, it makes up only 1% of the cancer diagnosis.  Strangely, it also boasts one of the higher cure rates for a cancer, yet it is also one of the most underfunded cancers.  Imagine, to be so close to finding a cure for everyone, yet it is not a priority for research because the current cure rate is acceptable.  I strongly disagree.

My story, like so many other long term survivors, have long medical histories of maladies that have struck us, and will effect us the rest of our lives.  It was our trade off for beating cancer.  For many of us, we often wonder if it was ever worth it.  Today, better and safer treatments, yield similar success stories without the severity of the side effects like many face, however, recurrences of their lymphoma are more frequent, and for some, still not successful.

My case in point.  The story of Alese Coco.  A television commercial aired several years ago which caught my attention.  To be honest, it was quite graphic.  And as a Hodgkin’s survivor, initially I felt offended at such a graphic commercial.  But then the reality hit me.  This commercial was the truth.  Please view the following link for the actual commercial:

http://www.shootonline.com/top-spot-week-alese-coco-fight-2-win-foundations-fight-2-win-out-draftfcb

Now if you are sitting there thinking, that is awful, and you really do not want to see more, that is where you could not be more wrong.  The truth is, any illness capable of taking a life, needs to have a cure found.  Sometimes it takes putting a face to a disease makes it hit closer to home.  As it stands right now, you have two faces, my face which is on the front of “Paul’s Heart” and Alese.  We are just normal people, not famous by any means.  So let me make lymphoma famous.  Here are a list of several celebrities who have battled lymphoma, and yes, even with the fame and money, still could not win their battle:

Paul Azinger – professional golfer

John Cullen and Saku Koivu- professional hockey players

Mario Lemieux – professional Hall Of Fame Hockey player and owner of the Penguins

Andres Gallaraga – professional baseball player for the Braves

Arte Johnson – famous comedian from “Laugh-in” days

Leshon Johnson and Carl Nelson – New York Giants football players

Lauren Hart – singer for the Philadelphia Flyers pregrame

Charles Lindgburgh – famed flyer died from Lymphoma

Charles Lowe – father of actors Robe Lowe and Chad Lowe

Mickey Mantle – famous New York Yankee

Roger Maris – Hall of Fame baseball player died from Lymphoma

Jackie Kennedy Onassis – former First Lady died from Lymphoma

Joey Ramone – Rock N Roller

Dan Rowen – comedian from Laugh-in died from Lymphoma

Fred Thompson – actor and US Senator

Arlen Spector – US Senator died from complications of Lymphoma

Mr. T. – actor from the A-Team television show

Gene Wilder – comedian and actor (wife Gilda Radnor died from Ovarian cancer)

Vivian Campbell – guitarist for Def Leppard (just completed treatment for a recurrence of Hodgkin’s Lymphoma)

Andy Whitfield – actor who portrayed “Spartacus” in the Starz mini-series died from lymphoma

Having been a fan of that mini-series, it struck me as odd that someone so physically in shape and strong, could have faced such a fate.  So now I have put a lot of famous faces to Lymphoma.  Imagine, but chances are you know more than 1% of the people I listed, yet the statistic is what it is.  Now imagine 1% of the people in your lives.  Imagine the 1% of the people in the world.

So, let us meet another non-famous person, teenager Roxanne:

https://www.akronchildrens.org/cms/meet_roxanne_hodgkins_lymphoma/

For me personally, I have met hundreds of cancer patients, not just lymphoma patients.  They all have faces.  They will never be famous.  But I will never forget what they have gone through, and for many, what they have lost.  So if you are reading this, you know at least one person who has battled lymphoma.  And I am telling you, we are so close to finding a cure for Hodgkin’s Lymphoma.  And that is why I am making every effort I can, during this month of September, to make everyone aware of Lymphoma.  You can donate to the Leukemia and Lymphoma Society, the American Cancer Society if you wish.  But more importantly, share this article.  Help me to help others put a face to Lymphoma.

 

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
02 Sep 2014

Lymphoma – Technology and Treatments – So Much Better, But Not Good Enough


Treating lymphoma has always been about timing.  I cannot talk about treating non-Hodgkin’s Lymphoma as I did not have it, nor do I know anyone who has battled it.  But as far as Hodgkin’s Lymphoma is concerned.  I was diagnosed six months before my first wedding (that is another post) and as I begged my oncologist (cancer doctor) that I wanted to hold off on any treatments until after my wedding, he was having no parts of it.  For a male patient, there really is no excuse for delaying treatment ever.  However, for a female who happens to be pregnant, this is a whole other issue.  For men, yes, sterility is an issue and for women as well, but when a woman is already pregnant, a hard decision has to be made whether to allow doctors to use toxic drugs to save her life, but also might adversely affect her baby’s life.  There is no guarantee.  I will talk about this type of decision in another post.

It has been over twenty five years since I underwent my first biopsy to diagnose my lymphoma.  And I am amazed to hear, as well as quite glad, that newer patients have not had to be subjected to the barbaric methods that I was diagnosed with.  But going back even forty and fifty and sixty years, cancer diagnostics have come a long way.  As for my experiences, here are three of the diagnostics that I rarely hear used today:

1)  bone marrow biopsy – taken from each side of my hip (felt like my ankles were being ripped up through my legs).  One side note to this, I actually had to have a third sample taken.  It seems that occurred after I heard my doctor say “oops” and claimed he had “lost” it.

2)  lymphangiogram – a cool sounding test, if you do not mind your legs being propped in a bent position for the entire procedure.  A slice is made into each foot, to all a doctor to use microscopic lenses to see lymph vessels (like blood vessels only much smaller) to inject a radioactive dye, that when subjected to an x-ray, lit my entire lymph system like a human Christmas tree to see where other possible affected lymph nodes might be located.

3) staging laparotomy – spleen removal, node biopsies, liver biopsy.  Not pleasant and quite painful.  An incision from sternum to belly button is made (any woman who has undergone a C-section will know this pain).

These three things were done to determine the staging of my disease, either 1, 2, 3, or 4.  By the time all was said and done, I was diagnosed 3b.  But in the decades since, a new kind of scan is now used to stage almost all cancers, a PET scan.  I only know enough from a few friends and my father who have undergone those scans to know they are no big deal.  In any case, I am glad that this new technology exists, however, it is still far from exact.  There are still uncertainties that exist during the staging process, and this can delay treatments.

So let’s talk about treatments.  Ask any radiation oncologist, and most will probably say they can cure Hodgkin’s Lymphoma with just radiation.  As any of us who grew up near a nuclear reactor like Three Mile Island, or know World War history, radiation in large amounts is a bad, bad, thing.  Side effects are brutal.  But radiation could give remission to certain cancer patients, especially Hodgkin’s patients.  Again, I will go more into side effects in detail in another post, but if you want to sneak a peak, I do have a link to the side effects from radiation I personally dealt with.

In the 1940’s, medicine discovered a drug, nitrogen mustard (a derivative of mustard gas, the same type dictator Sadaam Hussein used to kill his people), which had great results in giving people remission.  Just like radiation, it too had its drawbacks.  Besides being a deadly poison, it was also known to cause sterility in males during treatment.  Unfortunately for me, that occurred.  Shortly after that, a report came out that recommended that maximum treatments to reduce the possibility of sterility.  Yep, the two extra months of chemotherapy are probably what caused my sterility.

Like many people before me, I was treated with both radiation, mustargen, but also a cocktail of six other drugs, all carrying various risks.  And for survivors of Hodgkin’s from as far back as sixty years ago, yes, I know someone who has survived Hodgkin’s that long ago, these risks have become reality for us, and many quite critical to our health.  But again, over the decades since my treatments, the doctors found out that they could treat Hodgkin’s with less drugs, and soon, my chemo cocktail had been cut in half.  The hopes were to produce a remission more safely.  But it cannot be understated that the drugs are still dangerous, the damage to the human body still exists.

The last sentence for me became a reality this past year.  I met a young man who had done so well with his chemo therapy regimen, with the same drugs that I had been given.  Yet weeks later, he would be one of the rare patients who would develop a very bad reaction within two months of being declared in remission.  I did a post on Adriamyacin a couple of months ago, so you can find out the details there, and I will do another post later on.  But the long short of it, this young man, still a kid as far as I am concerned, died less than six months from the time that he was told to go ahead and enjoy his life.

Like I said, treatments today, while better than they were when I was treated, are still bad today.  We need better and safer treatments.  We need better and safer diagnostics.  We need better and safer follow-up guidelines.  I have no doubt in my mind, that had the young man who died as a result of the damage from his treatment, had he been followed up more closely being given a drug that was proven to cause potential damage to the heart, he would still be alive today.  A simple echocardiogram during the middle of the treatment, an inexpensive test when you put it in perspective that the lack of this test cost the man his life, could have given the doctors an opportunity to alter the treatment, or completely change the therapy regimen all together.

And so, during this month of September, National Lymphoma Month, I am going to inform you and educate why it is important to become aware of this rare disease that still needs a cure.  I am not asking you to make a donation, though I know I would personally appreciate it if you would.  But rather, I am about awareness.  Please, share this article, and the many that follow.  Share “Paul’s Heart.”  Together we can make a difference.

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