Paul's Heart

Life As A Dad, And A Survivor

Archive for the tag “radiation”

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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February 13, 2013 – The Colonscopy


There is no video diary of this process.  I am not a Kardashian.

My wife and I arrived up in NYC the afternoon before to locate our hotel room and then me rush to an appointment.  There is a hospital that provides a hotel at discounted prices, so for $250 for the night, the price was not bad.  And no bed bugs. 

Tuesday was Fat Tuesday.  The Pennslyvania Dutch also call it Faschtnact Day.  Faschtnacts are the yummiest, most fat containing, sugariest balls of deep fried dough, called a donut, that if made properly cannot compare if Krispy Kreme and Dunkin Donut were ever able to have offspring.  But for the PA Dutch, these donuts are also a sign of good luck.  It was difficult for me yesterday because I was officially on the clear liquid diet. 

I could not have them, but I wanted to make sure Wendy did, but they were only available by the dozen.  The question was, what to do with the other eleven?  I wrote before about the concierge at Sloan Kettering, Nick, also known as “The Ambassador”.   I thought who better to “enjoy” some good luck, but the man and his co-workers who everyday, greet each and every one of us, no matter what our reason for being there, with a smile and clear welcome.

As I approached the shuttle to get to my appointment at another MSKCC location, there he was.  Nick had actually been at the main building for a computer class that he had to take.  I went right up to him, and handed the box to Nick.  You could not mistake the sweetness because the smell of the donuts coated completely in white powdered sugar just wafted from the box.  He was so touched by the gift as I told him, it was just my way of saying thank you for all the years of “How you doin'” and “good luck today” greetings.  I told him that the next day was important to me, and unfortunately was fasting for it, and could not enjoy the Faschtnacts.  Lightheartedly, I told him, about the good luck that was to come with eating them, my dilemma, but that my luck would not be jeopardized as long as he would enjoy a donut on my behalf.

We rode the shuttle together over to the other location.  Our conversations were a continuous praise of each other’s importance to everyone that was in our lives.  I praised Nick for the many people he helped to put at ease as they entered the hospital for the first time, the most scary time in their life.  Nick told me he was proud to know me, for being an inspiration from my longevity to my determination, to courage I display, and the hope I want everyone to have, to overcome the trials.  I can accept all of the descriptions except for the courage.  I do not feel brave.  I do what I have to because I want to live.  I want to be there for my daughters.  We traded comments back and forth the entire ride.  Nick is such a great guy, and if you would ever have the unfortunate need to be at Sloan Kettering, I hope that your the first person you meet is Nick.  From his first interaction, the tone for the rest of your day will be set, as will the rest of your appointments.

With Valentine’s Day two days away, and no chance of any romance (flatulance is not a phermone, it is funny, but not a turn-on), no romantic dinner, I did the next best thing o the way back to the hotel.  I stopped at Crumb’s bakery for a red velvet cupcake.  If there is one thing I know about Wendy and special days… it is all about the cake.

I arrived back at the hotel.  The schedule had been set 3:00 appointment with Dr. F.,  and had to begin the “cleansing” process at that point at 3:00, and then 5:00 bottoms up.  I had to drink 8 ounces of the concoction that I mixed, part Sprite, and the rest Miralax.

The instructions on the bottle of this mild laxative said to take 17g and mix into fluid.  I had to drink 237grams.  I had high hopes mixing the powder with soda (pop), with a blend that would be familiar and simple to drink.  Now I ilke soda.  It is not unheard of for me to drink up to three liters a day.  But that is clearly because I had time to drink it.  But THIS, I had to drink an 8 ounce glass every 15-20 minutes.  As much as I enjoy drinking my carbonated beverage, I did not at this moment.

To be honest, it was not bad at first.  I chugged the first few glasses.  Maybe a burp.  Nothing down below.  So as another 15 minutes went by, did another shot of drinking a “Sprite Shake”.  Now I was finally feeling something grumble in my stomach.  It was time.  I wondered how long I was going to go through this once I was done drinking.

This was not the ideal romance Wendy had in mind approaching Valentine’s Day.  Watching me set the alarm for every fifteen minutes, drink, race to the bathroom, and repeat.  I’ll spare the rest of the details, because even as a man, it stopped being amusing.  I finished drinking around 9:00, and finished my trips to the bathroom around 10:00.  To be honest, I did not have the abdominal cramping that I expected and had been warned about, bloating sure, which is to be expected from drinking that much soda.  But at no time did I have to grab the “Oh Shit!” bar on the wall along the side of the toilet.  You know what I am talking about?  That metal pole you grab onto thinking an ass-blast is going to launch you off the toilet and your holding on for dear life will prevent that from happening.

The orders were not to have anything to eat or drink after midnight.  This was no problem, off to sleep I went.  I woke up the next morning fairly early, for no particular reason.  I was not nervous or anxious.  As usual, I was not hungry.  And there was also no urgency to get to the bathroom.  I got cleaned up, then woke up Wendy.  The plan was to get in, have the doctor get in, and get in, then get out.

I had gone over everything with Wendy, Plan A, Plan B, and though hopefully never have to be considered, Plan C.  Wendy had been designated my legal proxy in the event of being incapacitated along with making sure that my living directive be followed should anything happe.  From the registration area, we had a small wait in the reception area, and then my name was called.

I got changed into something less modest and climbed up on the bed.  In came the tech to insert the IV into me.  As I do with anyone chasing me around with a syringe or needle, I immediately go into “begging” mode.  I call it begging because I do not do well with needles and after the third or fourth attempt, I have had enough.  My veins have been destroyed by the chemo I had years ago.  So techs must go beyond the surface veins that had been used.  But of course, most techs do not like being told how to do their job.

This nurse was different though.  She had somewhat of a dry sense of humor as I found out.  Never watching the needle being inserted, Iwait for the “taste” of the salene before I begin to breath again and release the thumb nail from the forefinger of the opposite arm being used.  Realizing that she was successful, I told her thank you.  She said not to, because she had to do it again.  I have been through dozens of procedures and I have never had to have another line put in for something this routine, but she made it sound like this one was not viable.  But I saw the salene flowing, and she had left the butterfly needle catheter in my hand.  This lasted about a minute.  Then the joke was over.  In came the anesthesiologist.

There had been some concern from the last procedure that I had done.  Something had been noted that I did not tolerate the sedation prior to the anesthesia, so I was just going to get anesthesia this time.  Puzzled, I offered any kind of suggestions as to what could have been behind the report comment, cardiac, reflex, anything.  But there was no explaination.

Then I was wheeled off into a fantastic room, surrounded by flatscreens, machines, and several people.  My doctor came in, introduced herself, asked if I had any questions, when I said not, before I could get any last-minute immature comments about what she would find up my behind, the anesthesiologist had the mask on me, and I was out.

That is right.  You are either in “twilight” or out cold.  Either way, you have no idea what is going on.  So, down my throat she went with one camera, up the butt she went with the other camera.  No, she did not make any mistake on which one to use.  No, my breath did not smell like shit when I woke up.  No, there was no race to the middle of my intestine or ceremonial knotting of the cameras.

I woke up in recovery.  No fuss.  No muss.  The doctor came in, told me her findings and what had been sent to the labs for examination.  But both endoscopy and cystoscopy went without incident.  And she was confident, there would be no lingering effects like infection (something I am actually prone to).  The only thing I might experience was a sore throat which I do have, and perhaps some cramping which I do not.  So now I wait for the results.

One bad note, the colonoscopy will turn out inconclusive.  As it turns out, the amount of laxative I ingested was not enough, to “cleanse” me out.  Evidently, my bowel habit, rather, lack of one (yes, start the comments “I’m full of shit”, “that’s why my eyes are brown”, my system was not cleaned out enough to get a decent scope done.  Short of going up my behind with an old-fashioned egg-beater, I cannot imagine what I am going to have to go through next year, she has already ordered another colonoscopy to be done, to get cleaned out.  But evidently, it can just might provide me with the experience I did not get the prior night and thought I would.  At least I know what to prepare for.  This just gets chalked up again, to yet another issue of late effects from radiation and chemotherapy treatments of my Hodgkin’s Disease.

In conclusion, I would like to settle some comments that either I have made, or others have made in opposition of getting a colonoscopy done.  Number one, it did not hurt.  Number two, I did not wake up farting KY.  Number three, surprisingly, I did not wake up gay or homosexual (a popular myth of phobics).  Yes I do believe that orifice to be an exit not an entrance, but for this one test, for me to be determined next year it seems, it is important.  In all seriousness, I have lost too many friends to colon cancer, and know many more that are dealing with it.  Being a cancer survivor and having gone through the particular treatments that I did long ago, I am at risk for a secondary cancer, such as colon cancer.  I “manned up” and got it done.  If your doctor recommends it, do it.  Hopefully all you will have to deal with is peace of mind.

I had recieved an email that included a column written by Dave Barry and his experience with the colonscopy.  Barry’s experience was not much different from mine.  What I like that he included in his column, were comments supposedly made by other patients while undergoing colonoscopies.  To which I end with number 13 as I feel it is appropriate for anyone needing this defense ever, in their marriage or relationships.  It has been confirmed my head is not up my ass.

My First Visit To Sloan Kettering Memorial Cancer Center


March 3, 1995 was a day that I had waited for five years to occur.  I was going to use the word “cured” with confidence that my Hodgkin’s Disease would be gone forever.  I had learned so much over those five years.  I had to watch if I got a high fever, keep an eye out for lumps and discolorations, all common sense stuff that I could do on my own without having to pay a co-pay for.  And in spite of statistics being based on five year survival rates, there was no evidence that I was going to comply with those odds.  Things were on my side for a long life.

I recently wrote a post on “big hospital vs. little hospital” so I won’t repeat my thoughts on that at this time.  As far as I was concerned, it was life as usual.  I would see my family doctor, whose practice is an hour away from my home, once a year, for a seasonal allergy shot.  I never thought about hospitalization, because prior to my Hodgkin’s Disease, I did not need to worry about hospitals.

But then I got the rude awakening when I dared to complain about a symtpom that I had ignored for nearly four months.  I was told that I needed open heart surgery at age 42, and it was due to radiation damage from my treatments eighteen years earlier.  I was at a hospital that I was more than familiar with for many reasons, of which is another post.  But the Lehigh Valley Hospital was one of the biggest networks in the area, so I felt in good hands.

One of the first things that I should have done when I got out of the hospital was head to Atlantic City or Las Vegas.  I was one of the luckiest people on the planet because I not only pre-empted my pending fatal heart attack, but I would come to find out, after getting my surgical report, that my surgery was based on the care for the average heart patient, not for someone exposed to four times the lifetime exposure of radiation and chemotheraputic drugs such as Bleomyacin,  Adriamyacin and other anthracycline drugs.  Decisions that were made then, could have had much different results.  Neither my doctors, nurses, or myself knew what was at risk.

In the past, I had been involved with an on-line support group for Long Term Survivors of cancer.  Up until now, I had never felt like I belonged there, because everyone that I had met on this list, were dealing with ailments blamed on their cancer treatments, cardiac, pulmonary, liver, secondary cancers, etc..  At worst, any issues that I had been dealing with from my cancer treatments were some hair that had not grown back, infertility issues, and thyroid issues.  Up until now.  So the first thing I did from the hospital was not visit a casino or play the lottery, I went back to those that I knew, would know best.

I am not qualified to define what exactly a “Long Term Cancer Survivor” is, or determine what criteria is to be met.  There is no committee collecting membership dues.  There is no ruler.  There are moderators, who are survivors themselves facing severe health issues related to their treatments, and they have the unpopular challenge of protecting each participant from common email attacks or personality clashes.  The fact is, we have enough to deal with.  And so it began, the journey to find doctors who specialize in long term cancer survivors.

Unfortunately, long term side effects are not widely studied by primary care physicians, specialists, and other caregivers.  Only in recent years does the discipline even have a recognizable heartbeat with an occasional article in the New England Journal or other publication.  Of course, the researchers and pharmacutical companies did not spend much time or money on late side effects, because we were not expected to survive a lifetime.  But we do.

Through the Childrens Oncology Group, I learned that there were two facilities that were within a decent day’s road trip, in Philadelphia at the University Of Pennsylvania and in Manhattan at Sloan Kettering Memorial Cancer Center.  From the internet support group, I knew a lot more about the program at MSKCC, but knew that both hospitals were some of the best in the country.

Scared, and running out of hope, I contacted the first name that I recognized from MSKCC, Dr. O.  In him, I struck gold.  He originally practiced in Texas.  For decades, this doctor studied Hodgkin’s Disease and survivorship of the late effects from treatments.  To get an appointment with him was the equivalent of winning the lottery.  I know of some other patients that see him, and knew that I was being cared for by the best, the leader, the example for survival care.  Through his leadership and mentorship, there are now many survivor clinics accross the United States, and the knowledge is now spreading across the world.  Survivors of cancer were not only being recognized, being represented, but being cared for.

Today, there are protocols for new patients when they reach the end of their treatments.  The medicines and procedures are less invasive, less toxic, and result in less severe side effects, but to be honest, the risks do still exist.  That is why there is the Relay For Life and Stand Up 2 Cancer.  Better ways of diagnosing and treating cancer need to, and can still be found.  With the follow-up protocol, the chances for picking up a late developing side effect, or secondary cancer, can now be found earlier and have the better success to survive, as if surviving cancer was not enough of a challenge.

My first trip to Manahattan since high school was overwhelming enough let alone to walk into one of the greatest medical facilities in the world.  I was greeted by Nick, also known as the “Ambassador” who gave me the instructions I needed to locate Dr. O’s office.  It was there that I met Beth, a nurse practitioner who had spent a long time with the cancer survivor program.  We spent close to an hour going over my health history.  She offered me compassion, empathy, and care as it was obvious, an entire new world was collapsing all around me.  I thought I was only going to be talking about cardiac issues.  But there was so much more.

Eventually, Dr. O came in and spent another hour with me, this time explaining all the things that had been discovered about cancer survivors like me, what had been done to me, and what would need to be done to care for me.  As he put it, “I want to make sure that your grandchildren get to know the great man you are and what you have been through.”  Okay, I was not really thinking about grandparenthood at 42, but I like his long term thinking.  Together we came up with a plan including retrieving my old records to find out exactly what I had been exposed to, and compare what they now know as far as what to look for in late developing side effects.  These are all things that are done now with current patients.

Nearly five years later, comparisons can now be made for me that show the progression of any of the side effects as there were no basline studies done on me 23 years ago.  I have a complete understanding of what my survival has meant to me, but also what it means to others, my family, my friends, and other survivors.  There are millions of us who have survived cancer.  Not all surivivors will develope side effects.  Not all survivors will know if what they may be dealing with may actually be attributed to their treatments.  That could be a good thing, take it from me.  It is a Pandora’s Box to know that more issues can occur, will occur, to know the increased risks at being proactive or letting things take their course.

This past week, it had been confirmed a symptom that I complained about two years ago, had returned, and why.  It is also suspected of causing a serious bout of “aspiration pneumonia” two months ago.  but this is just the beginning stages as further investigation will take place later this week to get an overall view from beginning to end, and then a new treatment plan will be determined as I continue to age towards grandparenthood.  Thankfully, because of Dr. O, and more than a dozen other caregivers that he has me deal with, I am going to get that chance.

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