Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Side Effects”

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
03 Sep 2014

Should I Work?


Continuing on with my posts in recognition of Lymphoma month, is a question that I am asked regularly, not just by Hodgkin’s patients, but by patients of other cancers as well.  “I have cancer.  Should I work?”

This is not an easy question to answer because it really is about choice.  But were I to be given the chance again, I would not work.  I am third generation blue collar worker.  In other words, unless you were on your death bed, you showed up for work.  And even then, I might still try to get some work while lying there.  Being recommended to go on “disability” was not something I was even going to entertain the thought of.  Besides that, I had a couple other thoughts.  I was not going to let cancer dictate any more of my schedule and routine than it already had.  I was going to continue on, with the exception of when I had to go for my treatments.  The other, and just as important to mental health, I did not want to just sit around, with nothing to do, except think about me going through cancer.  I needed to keep myself busy.

And if it had been that simple, I would have made the right choice.  After all, I missed only limited time, two hours for two Fridays each month for my injections, and an hour in the morning for thirty mornings for my radiation treatments.  My employer was definitely thrilled that I was not out for the entire time.  After all, I was tougher than cancer.

But as I mentioned, cancer is not just physical, it is also mental.  And unless you have the misfortune of going through a very bad illness such as cancer, I do not think a person can truly grasp what happens to our bodies.  I do not fault anyone for that, but I do have to lay blame for their behavior that results from their ignorance.  That can be controlled, but it is not.  Instead, as if I was not dealing with enough with the cancer itself, all of a sudden I had become a burden to my co-workers.

Now you may be saying, “how could you have become a burden?”  Simple, most employers have attendance rules and other policies.  In spite of me being a private person, my co-workers seemed to have possessed knowledge that I did not.  They assumed that I was getting special favors because of the time I was missing (the minimal time that it was), and this was not fair.  It was not their concern, especially that I was not getting paid for that time, but my absence was a huge inconvenience to them.  Twenty five years later, I still have not figured out why.

But the stress that was created by their scorned looks, and clear bad attitudes towards me, only helped to increase, rather decrease my immunity.  Stress is a body’s reaction to the environment around, and it has profound effects on your immune system.  And do you know what else has an effect on your immune system?  That is right, chemotherapy drugs.  And what happens when your immune system is down, you are more susceptible to other ailments.  It is easier to come down with other ailments that others at work do not have the consideration to keep at home, like Strep Throat, sinus infections, Flu, and many more.  To a cancer patient, this can be quite serious.

Of course, I was bull-headed and just pushed my way through this.  And when my treatments were done, and my attendance record was still in tact, I only used that as motivation to go forward in my life as a hard working, dedicated employee.  In no time, I would increase my working days and hours.  Into my second decade of survival, I would actually start working seven days a week, and operated a couple of businesses that I started up.  I would push myself as hard as I could, and my new employers would expect nothing less from me.  After all, this is who I was.

But in 2008, my world came crashing down in a big way.  A major complication from my treatments had created a life-threatening situation and I needed life saving heart surgery.  You can read the page “CABG – Not Just A Green Leafy Vegetable” for the whole story.  But what happened after the surgery, set me down a path that I would not realize would cause even more harm, until just this past weekend.

Following my heart surgery, obviously I was going to miss a lot of time from work for that, by no choice, I had been told six months.  This was due to the radiation therapy posing potential issues with the healing of my breast bone.  But my employer was going to only grant me three months.  But what my co-workers was even more horrendous.  One of the very first things following my surgery, the doctors wanted me to walk.  I had left the hospital after a week, and on the very first day I went for a walk, just up to my corner and back was all I was up to.  But a co-worker had seen me making this trek, and when he arrived to work, told other co-workers that he had seen me walking and I looked great and could not understand why I needed to be out any further.  The animosity by my co-workers towards me only grew worse.

As time went on, more symptoms started appearing with physical issues affecting my shoulder, neck, back, and hips.  This caused more limitations, and more grief from my co-workers.  Eventually it got further into my head, that I had to be the problem.  Issues arose with my supervisors trying to accommodate me and my working restrictions, as required by the American With Disabilities Act, and yes, that meant more resentment.  But these accomodations allowed me to continue to work, and work the many hours that I had always done.

This just resulted in more issues, as my body continued to struggle keeping up with the load I placed on it.  Eventually my immune system would run down again, and I got hit with two cases of life-threatening pneumonia, one I was septic, the other was double pneumonia.  And six months later, another heart episode.

Earlier this year, something finally happened that my body or my will had no control over.  Just a continuation of the struggling economy, and what I would describe as a big company simply not greedy enough, downsized my department.  Soon my hours were reduced, and eventually, the assignment that I have had for all these years with my restrictions was taken away from me, eliminated.  This put me into a general labor pool which I was no longer able to do.

I have not been at work since April.  And you know what?  My body has had time to rest, something I have denied it for a long time.  But yesterday, as I was on a friend’s boat, as we sailed out to a popular island, I sat on the bow of the boat, looking at all the wonderful surroundings, feeling totally relaxed, and it had finally hit me.  If it is going to come down to me or everyone else and what they expect of me, what is going to do more harm?  If I do not care about myself, how can I expect anyone else to care about me?

Again, if a person is fortunate enough not to have to deal with a cancer diagnosis, or anything else as severe, you will never get this.  Because of others, even those close to me, I allowed myself to push my body beyond what it was capable.  A cancer patient’s body has been put through enough with toxic chemicals and radiation, and probably life altering surgeries, than to be expected to do any more.  This does not make you weak.  For the first time in my life, I think I am finally able to recognize and accept the word “disabled”.  No, not in the sense that I need to be taken care of or have become unable to do things on my own, but my body is not just the same.  I have exposed myself to too many risks by wearing my body down, and being near those who have just not been considerate to have stayed away from me exposing me to all kinds of illnesses.

So again, should you work while you are going through your cancer experience or after?  It still is a personal decision, and one not to take lightly.  But if it were up to me, I would definitely have done different and taken better care of myself.  I will no longer allow anyone expect more of me, than what I know I can do myself.

Posted in Bullying, Cancer, 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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