Paul's Heart

Life As A Dad, And A Survivor

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Treatment Options For Hodgkin’s Lymphoma


Medicine has come a long way in the 25 years since I was treated.  But medicine has a long way to go.  While many cancers have high cure rates, often those cures have come at a cost because of the late developing side effects, hence “Paul’s Heart.”  But I am able to tell you, that in spite of my treatment options now pretty much obsolete, or no used when no other choice, treatments today, while safer, are not 100% safe.  The newer treatments still produce remissions, but also still allow recurrences.  But also in some rare cases, lethal incidents.

Current options have increased dramatically.  Where it used to be believed that Hodgkin’s could be treated with radiation therapy alone, medicine advanced to chemotherapy, and today, other alternatives.

The first option I chose, whether it was the correct one or not (my doctors recommended chemo followed by choice), I chose to do radiation therapy alone.  If radiation did not work, then I would have to go forward with chemotherapy, but if it did, I felt that I would not have to endure the stereotypical nasty side effects of chemo.  After all, in my mind, I had reduced radiation therapy to nothing more than just 30 days of x-rays.  And I could handle that.

Now, there is a big difference between how radiation therapy is administered today and back in 1989.  I was given 30 treatments, totaling 4050 cGy, the unit used to measure.  To the common person, this number means nothing.  But to anyone who works with radiation knows, as does medicine today, this level is four times the maximum lifetime exposure to ionized radiation.  But as far as medicine was concerned back then, it cured Hodgkin’s Lymphoma.  But ask anyone who was treated with radiation prior to the 1990’s, it did more than just cure our Hodgkin’s, decades later, long after we were not to have survived more than five years, and we will tell you the medical nightmares that our bodies have become (see “CABG – Not Just A Leafy Green Vegetable” for my story).

Fortunately, in the 21st century, medicine has learned that it can cure Hodgkin’s with the same success, using less radiation, and more defined instead of the “scattered field” technique like was used on me.  I simply laid on a table, and was hit with a radioactive beam from my jawline to my lower abdomen.  In other words, a scattered field.  My body got radiation to areas that were otherwise healthy, with no sign of Hodgkin’s.  Doctors now believe that they can treat more successfully with less.

I ended up having to go through chemotherapy anyway.  While it was not the horrific experience that I remember seeing broadcast on television and movies, it was still rough.  Depending on the chemotherapy cocktails used, there are several options, chemo is meant to do only one thing, kill cancer cells.  But since chemo is not intelligent, it cannot just kill cancer cells, so it also impacts healthy cells.  This is one of the reasons many cancer patients experience hair loss.  Fortunately, the hair does grow back, and while we love our hair, there is no treatment for the hair loss during chemo.  However, healthy red and white blood cells are needed for our survival.

Back in my day, we were not treated if our blood levels were too low.  But today, patients can get booster injections to increase red and white blood cells to allow the best opportunity for treatments to continue uninterrupted.

Of course the image that most people have are patients hooked up to IV lines, in hospital beds.  I was treated as an outpatient, in a dungeon-like environment.  Almost twenty minutes each treatment  was spent just finding a healthy vein to use as the chemotherapy had reaked havoc on my veins each treatment.  Today, patients sit in chemo suites with other cancer patients, watching TV, listening to guest musicians play songs, visits from therapy dogs, and eat lunch.  And to make the injection process easier, ports are surgically implanted to all consistent and simple access for the IV line to carry the chemotherapy.  Oral chemotherapy may also be included.

While both radiation and chemo have improved in both safety and success, it is still not giving 100% survival.  I do not know that much about the following options that are now available, but they are to be kept in mind, that progress is being made:

immunotherapy – using vaccines and other methods to make your body use its own immune system to fight the disease

bone marrow transplants/stem cell transplants – using the patient’s own marrow, usually combined with higher doses of chemo

allogenic transplant – using stem cells from a donor, usually sibling, or matched donor, combined with higher doses of chemo

clinical trials – these are the newest of possibilities, little known about long term side effects, and the treatments have not been approved by the FDA as official treatments, but for patients who have no other hope, perhaps the best option available.

alternative therapy – this is a tough one, because I do believe that there are options from nature itself.  I strongly believe however, in going by what has been scientifically proven first.  Then, and only then, I will concede to a complimentary therapy which uses conventional means, along with alternative – but only, and ONLY after consulting with the treating oncologist.  Alternative medicines, even vitamins can have profound impact on the effectiveness of chemotherapy and the body.  And while not to be a killjoy with alternatives, if that is the only chance left, then you should go for it, if that is what you believe.

Yes, progress has been made.  But there is still so much more that can be done, and needs to be done.

Cancer And Music


There is an expression, “music calms the savage beast.”  Cancer is a savage beast.  Today’s chemo suites are nothing compared to the dungeonous type environments of today.  While attending my father’s chemotherapy sessions with him, it was not uncommon to see an elderly gentleman playing guitar singing Jimmy Buffet.  This was never the case during my chemo days decades ago.

I have always found solace in music.  No matter the difficult times that I have faced in my life, and there have been many, music has always gotten me through it.  Whether dancing, singing, playing, or simply listening to it, music has a way of helping us relax and focus.  As it was when I went through my chemo.

Each appointment, I sat in the chair, placed my headphones on my ears (we did not have ear buds then), and pressed play on my Walkman (for those of you who have no idea what that is, along with vinyl and 8-track and cassette tapes – the Walkman played CD’s before music became convenient on an Ipod).  From there, I would let my music that I selected that day, take me to places far away in my mind, while the chemo flushed through my body healing me.  The music helped keep me calm and distract me for the two hours or so that I was there.

Today, much of the music that I listened to, serves as a reminder, taking me back to a place I was long ago.  And I remember what music did for me then, and when I have troubles today, I simply reach out for the same thing that continues to get me through my times of strife, music.

Diagnosing Lymphoma – Why Is It So Hard?


Hodgkin’s Lymphoma is considered a rare cancer.  It makes up just 1% of all cancer diagnosis.  Its rarity is what makes it so difficult to diagnose in a timely manner.  Yet, timeliness is critical in treating Hodgkin’s as this particular cancer has a cure rate of over 85%.  Case in point.

At age 22, I was a healthy and fairly fit young man.  I did not contract colds or the flu.  The only time my family doctor saw me was to deal with a seasonal allergy.  But one day, while sitting at my desk at work, an itch on the back of my neck caused me to reach back to scratch at it.  But instead of a simple itch, I was shocked to feel a massive lump.  There was no pain, and more importantly, there were no other symptoms.  As I said, I rarely get sick, but I was not going to take any chances.  I went to my doctor.

He had told me that I probably just had some sort of infection going on, perhaps even a minor cold.  He was not concerned that this was a swollen lymph node because of its location.  He said that if it were located a bit higher he would be more concerned.  He prescribed an anti-inflammatory drug and antibiotic, and told me to get a lot of rest.  This was asking a lot of someone who exercised every day and was heavily involved in sports.  But I did as I was told.

After two weeks, the swelling did in fact go down and I resumed back to my normal activities.  Talk about being frustrated.  I had never been on any kind of injure reserve status before.  I jumped right back to the gym and resumed my workouts right where I left off.  Not smart at all, but I just felt good doing it.

Two days later, I developed a pain under my left arm pit.  When I extended my arm, I felt a pulling sensation.  I thought for sure I had strained something.  A co-worker had recommended that I see his doctor because he specializes in sports injuries.  I have only had two doctors in my life at that point, and though I had no reason not to go back to see my family doctor, I took Steve up on his offer to see his doctor.

Another family practitioner, he questioned why I was seeing him.  And I explained to him that I hurt myself exercising.  He felt under my arm, and examined the shoulder area as well.  Then he asked what I had been doing prior to the injury.  I told him that I was being treated for a cold, took a couple of weeks off and had just gone back to exercising, clearly using poor judgment going full tilt right away.  But as I told the doctor about that, he immediately felt around my neck and found the swollen lymph node I had just taken medication for.  The swelling had returned in just the two days off the medication.

He recommended that I see an oncologist – note – I had no idea what that was at the time, because he was concerned about the lump.  Me, I was concerned about the injury.  Long story short, and six second opinions later, including an oncologist, I was diagnosed with Hodgkin’s Lymphoma.

I hate telling this story, because the first thing that happens when I mention a swollen lymph node, everyone goes into a panic when they have one.  A swollen lymph node is doing what it is supposed to, handling bad stuff, sending it through your body to be handled and disposed.  However, it is when something is too much for that lymph node, everything goes wrong (I simplified that by a mile).

Bottom line, if you develop a swollen lymph node, let the doctor decide and diagnose.  But the trick is, you have to remember everything that you have been feeling up until that visit.  I am certain that I had more symptoms, but in general I am not a complainer.

The Facebook page Lymphoma And Hodgkin’s Disease Awareness And Survivors Club posted a list of symptoms to look out for, to tell your doctor, and to urge you to get the necessary diagnostics done, such as X-ray (although HD did not show up for me on x-ray), CT scans, or PET scan.  The diagnostic tools when looking for Hodgkin’s are much better than they were 25 years ago, but still require the patient to fill in the blanks so that the doctor goes in the right direction.

Here is they list of popular symptoms of Hodgkin’s Disease (and I must stress, having any of these does not mean you have Hodgkin’s – I am a horrible sweater):

1)  swollen lymph node in neck area, armpit, or groin

2)  abdominal pain or swelling

3)  chest pain, coughing, or trouble breathing

4)  fatigue

5)  fever

6)  night sweats

7)  weight loss

8)  itching

9)  alcohol pain following consumption anywhere in the body

10)  loss of appetite

I only presented one symptom to the doctor.  It is no wonder I was misdiagnosed.  But I do not fault him.  Hodgkin’s is a rare cancer, and unlike breast cancer which most family practitioners can at least have an idea of what to look for, most GPs do not, even to this day.

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