Paul's Heart

Life As A Dad, And A Survivor

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.

Surviving Cancer – Is It Enough?

I was sitting on the bow of my friends boat this afternoon, headed for a popular local attraction in southern Florida.  I mention this because it was a beautiful day, a beautiful ride, and it gave me a lot of time about what I was going to write today.  In the wake of recent on-line challenges, the “ALS Ice Bucket Challenge”, “Happy Challenge”, and others (I have actually done the first two), I realized how much good had been done for ALS awareness, and also how happy a person I really am and can be.  While ALS is considered rare, putting a name to the disease, Lou Gehrig’s Disease, made the disease recognizable, and for many, personal.

I decided a week ago, that I would issue my own challenge, but to myself.  I am very grateful to the many readers and followers of “Paul’s Heart” and on the same Facebook page.  I have spoken a lot about my issues as a patient, a survivor, and as a caregiver of not just cancer, but a rare blood cancer called Hodgkin’s Lymphoma.  September is “Blood Cancer Awareness Month” but also recognized as “Lymphoma Month” for those that break it down.

The trick is, how do I make you care and develop awareness of a rare disease?  Sure I could issue an internet challenge.  I am sure everyone is trying to brainstorm the next big fundraiser.  But I think the big success of that challenge, is what I plan to do, put a face or make my challenge personal.  I am not going to ask you to anything but read, learn, become aware that just because a disease is not the most talked about, such as AIDS, breast or lung cancer, cardiac disease, does not mean that it does not deserve or need attention.  What you do with what you learn is up to you.  I am not challenging you to donate money, just become aware.  I am not asking you to do any stunt, just simply share what you read.

I am not a doctor, so you will not get medical advice from me.  What will you get?  Life experiences, of my own, and from the hundreds of people that I have come across over the last 24 years.  Twenty-four years!!  I have seen so much progress in the fight against cancer, and my cancer, Hodgkin’s Lymphoma, but it has not been enough.  Cancer has ravaged my family.  My grandmother died from two cancers, breast and ovarian.  My sister passed away a few years ago after battling “aplastic anemia” for the second time in her life (she had been in remission since the late 1970’s with her first battle).  This past May, I lost my father from lung cancer.  This is nothing compared to the dozens of friends that have passed from either the cancer itself or the many side effects that have developed either soon after treatment ended, or late in life like I have had to deal with.

For the next 30 days, I will post 30 posts pertaining to a cancer that I know all too well, in recognition of Lymphoma Month, Hodgkin’s Lymphoma.  I will post about my own story, other patients and survivors, caregivers, and topics such as emotions, family, fertility, employment, treatment options and many more.  I will also post other stories not cancer related because “Paul’s Heart” is more than just a cancer blog.  It is about my life as a survivor and as a single dad.  Of course, if you wish, you may comment directly on the blog, or write me at, or visit my Facebook page for “Paul’s Heart.”

I am a 24 year survivor of Hodgkin’s Lymphoma, stage 3.  I was treated with some of the most toxic drugs.  For years I have struggled with why I have survived all these years, while so many do not.  As time has gone on, new treatments have come, but enough has not been done to cure Hodgkin’s.  Follow “Paul’s Heart” through September, and you will see why more needs to be done.


There was a custom in the mid to late 1980’s, usually while driving, when spotting a Volkswagon Beetle (for those that need the image… recall “Herbie The Love Bug”), if you had a passenger in your car with you, and either of you spotted one of these “bugs”, it would become a race who could curl up a fist and either punch the other person in the leg or arm. And it was usually a good wallop too since participants were usually well into their teen years.

As time went on, the Volkswagon Beetle (bug) disappeared. And so did the frequency of “bug” sightings and assaults. This aggressive car game had gone the way of the Beetle.

For me personally, I did not pay attention to the return of the Beetle, which resembles its earlier design and never seems to change in appearance from year to year. But somehow, along with its return, came the return of the warcry “PUNCHBUGGY!!” and the painful reminder.

My memory had been refreshed during my daughters’ visit with me this Summer. Within the first day of their visitation, I was surprised to see, hear, and feel, they had learned a game that I thought had been long gone. And there it was…”PUNCHBUGGY!!!” followed by one punch and then completely off-guard another “PUNCHBUGGY!!!” came from the other side of me, along with another hit.

Who taught my daughters this game? Bad enough to get one, but to get it from two at the same time? They worked well as a team too. One daughter would hear the other, and then load up her fist and follow up. I did not stand a chance.

My daughters enjoyed playing “PUNCHBUGGY!!” with me. And I think I got hit with it every day that they were here. And as much as the cry of “PUNCHBUGGY!!!” came out, even though it was from my daughters, I did grow weary of it, not to mention, quite sore.

My daughters returned home to their mother last week. Funny but I do not recall paying attention to Volkswagon Beetles before their visit as I do today. But as I waited for my car to be unloaded from the Autotrain, I counted fifteen Beetles being unloaded from the train. On one hand, grateful that my arms would not be completely limp and in pain, while at the same time, yes, wishing I would hear “PUNCHBUGGY!!!” again.

Such as life. This is one of the lighter stories of divorce. This is about a game, and how much it causes my heart to miss my daughters. Every day now, I see at least one “bug”, and in my heart and in my head, I yell, “PUNCHBUGGY!!!” to myself, and instead of a punch, I get a smile.

I cannot wait until our next visit.

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