Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “September, 2014”

Question – How Do You Get Through Scans?


The most frequent question that I get asked, is “how do you get through scans?”  The question can pertain to other testing as well, because either way, an enormous amount of anxiety is created around testing time.  And whether it is diagnostic, follow up, or anniversary, the anxiety is often times unbearable.  And it took me a long time to master controlling it.  But it can be done, simply, by keeping things in perspective.  Keeping in mind what you have in your control, and what you want your end result to be.  Like I said, it sounds simple, and it is.  I just never had anyone explain it to me which is why it took me longer to figure out.

First, for those whose anxiety is at the diagnostic stage, there are two things initially you have to keep in mind.  Reality check, and you have to accept, there is the likelihood that you are going to end up with a diagnosis of cancer.  So you have two ends, a positive and a negative.  This is going to be the most difficult anxiety to learn to control, but it can be done.  The first thing you keep in mind, the scan or test being done, is nothing to get through.  And if your result is a negative one (that means you are not getting diagnosed with cancer – confusing I know, but this is one time that you want the negative result), you move on.  But if you are unfortunately told the results are positive, you end up at the next cross road.  Do you want to live, or give in?  I believe the majority of the people who are diagnosed with cancer want to live.  So, if that is the case, then you are going to fight it.

Like I said, it sound simple, and it is.  You already have two steps into the cancer process knowing what could potentially lie ahead of you.  You already have it in your mind that you are “prepared for the worst, and hope for the best.”  Once the testing is done, it is out of your hands whether you have the results tomorrow, or next week.

But another anxiety exists when you are half-way through treatments, and that half-way scan gets ordered.  By now, the anxiety is not of the scan itself, but rather the result.  And again, it can be handled the same way.  Once the scan is completed, it is out of your hands.  And the thinking is the same way.  You are either going to continue to fight as the results show positive direction in your treatments (there we go with the play on positive and negative again), but again, if the results show treatment not being effective, then you know you have to try something different.  Again, when you know what your options are going to be ahead of time, you have the better chance of reducing the anxiety.

And the final anxiety comes not necessarily from the last treatment or final scan following treatments, but rather anniversaries.  As a cancer survivor, we all look forward to that anniversary that we are in remission.  The first year is the worst.  The last thing we want to hear after being cancer free for a year, is to hear the words relapse.  But guess what, go into the scans just as I have suggested the other tests.  If the scan is negative, see you next year.  And if the result is positive for a relapse, then you have to fight again.  You have come too far.  But as each year goes by, this anniversary anxiety fades.  The belief being that the longer you are in remission, the less likely of recurrence.  And I believe that to be true in most cases.  Before you know it, year 2 and year 3 pass by, and then we hit that magical year number five which is what society deems us officially survivors of cancer – in other words, we met their life expectancy.

I am in remission now over twenty four years.  I do not have the anxiety I had heading into my 5th anniversary or even my 10th.  As each year it has gone by with less and less.  I realize number twenty five is a major milestone for a cancer survivor.  And I hope to continue to go well beyond that.  I know a sixty year survivor of Hodgkin’s Lymphoma, and I want to be like him.

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.”

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.

 

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