Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Education”

What’s Your Sign? Mine Is Cancer.


One of the most common issues I come across patients is when it comes to dating, when is the right time to discuss that you had cancer, and as in my case, some very serious late developing side effects.  I had originally wrote this in various forms, but felt this small script would illustrate a lighter side, to hopefully take some pressure off wondering when would be the right time.  I will write about my own personal experience in a near future post.  As always, feel free to comment or ask questions, if you can relate to this type of problem.

 

“My name is Stephen. I have a friend named Paul. Poor guy. He is in the middle of his second divorce. If only that were the hardest of his problems. He is not a bad looking guy, and he is really nice. But for the first time in twenty-four years, he is heading back into the dating pool, that’s not the hardest this got. In that twenty-four years, he had to battle cancer and some late developing side effects from the treatments.

He has been reluctant to date, because he wants to be honest about his medical history, but has no idea, when the time would be right to bring his health up. I told him to go with his heart. He would know when. And with that, I set him up on a dinner date with a friend of mine, Josephine. They are about the same age, attractive, both have hearts of gold, and unfortunately share something in common.”

 

Hostess:              If you follow me sir, your guest is already seated at your table.

Paul:                      Thank you.

Hostess:              Here you are sir, may I introduce you to Josephine.

Paul:                      Nice to meet you.

Josephine:         Nice to meet you too.

Hostess:              Your waitress will be right by to take your drink orders.

A couple of minutes pass as Paul and Josephine exchange some chit chat. The waitress stops by the table.

Waitress:            Good evening. My name is Alyssa and I’ll be your server this evening. Can I get either of you something to drink?

Josephine:          I would like a glass of cabernet please.

Paul:                      I will have a glass of Yuengling Lager, and I had cancer twenty-three years ago, (he says softly and very quickly under his breath).

Josephine snaps her attention to Paul, unsure of what he just said following the word lager.

Waitress:            Very well. I’ll be right back with your drinks and to take your orders.

Paul:                      So Josephine, it is really nice to meet you. Please, tell me about yourself.

Josephine:          Well, I’m originally from New Jersey but have lived here for about ten years. I have two grown children. How about you?

Paul:                      I’m originally from Pennsylvania and moved here recently. (The waitress returns with the drinks) I have two children that I adopted from China because chemo left me unable to have biological children (once again much too softly and quickly for Josephine to hear what he has said)

Waitress:            And here you go… Cabernet for you Miss and a Yuengling for you sir. Are you ready to order?

Josephine is really confused at this point but nods “yes”.

Paul:                      Yes, we are.

Waitress:            For you Ma’am?

Josephine:          I’ll have the mussels for an appetizer, a Caesar salad, and the baked mozzarella ravioli with Shrimp in Alfredo sauce.

Waitress:            And for you sir?

Paul:                      I tried radiation first I’ll have the house pirogues with the garlic butter sauce… (Josephine now really concentrating on Paul’s seemingly subliminal conversation) And I too will have a Caesar salad because chemo worked better. And I would like the sirloin cooked medium my Hodgkin’s lymphoma was rare enough.

Waitress:            Very well. I will put your order in right away.

Josephine:         (looking for clarification) So Paul, you were saying… you have two children…

Paul:                      Yes, two beautiful daughters. I work as a laboratory assistant for a pharmaceutical company as a way to pay forward, for medicine finding a cure for me.

Josephine now totally confused, asks Paul…

Josephine:          Is there something that you need to tell me?

Paul:                      Actually there is. I just don’t know where to start. I’m attracted to you. And you are definitely a wonderful woman. But I’m afraid that what I am about to tell you, might ruin any chance I might have to get to know you better.

Josephine:          Why don’t you let me decide? What’s on your mind?

Paul:                      I am a cancer survivor. I had Hodgkin’s Lymphoma twenty-four years ago. I have had to deal with some pretty nasty late developing side effects since then. But for the most part I am healthy otherwise.

Josephine:          I must tell you, I wasn’t expecting to hear that at all. But guess what? My son, who is twenty-three just completed his treatments for Hodgkin’s Lymphoma and I’m sure he would love to meet someone who has survived for so long. It won’t happen right now, he’s recovering from his own complication from his treatments as well. That is actually what I am doing here. I have been staying here while he’s recovering in the hospital.

 

Stephen: Sometimes when we least expect it, and not looking for it, opportunity finds us. At times, it is more than just an opportunity; it might just be much bigger than that.

Cancer And Relationships


It is often difficult to go beyond the thought, that a diagnosis of cancer can go beyond that of the patient who has been diagnosed.  After all, it is the patient who is in the race against time to avoid one statistic, death, but become a statistic, survivor.  It is the patient who is going to undergo the testing, and the side effects from treatments.  It is the patient who is going to deal with the never-ending fear of recurrence.

But the truth is, when a patient has a significant other, whether it be boyfriend/girlfriend, spouse, life partner, that person gets thrust into a role that comes as much a shock as the diagnosis of cancer itself, caregiver.  Most likely, neither patient or caregiver has any experience about the path they are going to go down.  From personal experience, this should not be taken lightly.

Relationships have enough difficulty surviving without constant effort.  And when things interfere with relationships on a daily basis, such as money, activities, sex, stress, work, a cancer diagnosis, just as any other illness, can complicate things further, or at the least, create issues.

Non-binding relationships allow the easiest escape, but for those that are married, there is that whole “for better for worse, from church until hearse, sickness and health”, which in spite of my track record (one divorce, one pending), I do believe in.

When I was diagnosed, I was six months away from getting married.  I explained to my fiancé, that I knew from that moment on, I was not going to be able to give her the “fairy tale” marriage that she may have always dreamed about.  I might not even survive.  I offered her the chance to walk out the door, for another chance at happiness.  I would not hold anything against her.  It was my fault that I would not be able to live up to what I thought she might have wanted.

Let’s face it though, if you have a significant other, who is facing a life-threatening and critical situation, any human being with an empathetic heart is going to do “the right thing” and stand by their partner.  No one would want to be labeled an asshole for bailing on someone in their time of direst need.  But the truth is, that might be the best option after all.  Especially if a person is incapable, not on purpose of course, of meeting the needs, emotional and physical.

My fiancé became my wife.  The wedding happened as planned.  The honeymoon was altered because financially, and physically I was not going to be up to the physical needs for the plans we had.  I had just completed my radiation therapy before the wedding and I was exhausted.  Upon return from my honeymoon, I was faced with the news that I would have to undergo chemotherapy.

But through all of my treatments, both radiation and chemo, and during my procedures, she and I never talked about my cancer.  In fact, when I finished my treatments, and received the news that I was in remission, she took that as a release, we would no longer have to hear the word “cancer” in the house, and it pretty much was not to be spoken again.  And if I did, I was often met with “why can’t you just get over it.”  And I tried, but I could not “just get over it.”  This laid the foundation for the eventual failure of my first marriage.  We could not deal emotionally with the scars we wore from my Hodgkin’s fight, so anything that came along on top of that, money, sex, attention, only made things worse.  And when we finally had our first true husband-wife conversation, it was an explosion that neither of us were able to prepare for, and emotionally it was crippling.  That was the end of my first marriage.

I do not blame her, not entirely.  But I did warn her.  I did not have access or knowledge of how difficult dealing with cancer was going to be, like I do today.  Looking back, she lacked attention from me.  Cancer dominated my life, and when I was done with it, I found out, I was never going to be done with it.  But instead of dealing with our issues, and I cannot stress it enough, YOU CANNOT DO IT ON YOUR OWN!, we hid them.  Our relationship suffered, and resentment began to build.  And it was only a matter of time, until that resentment would come out.  I wanted to get help for us, but she did not see the need, until I told her I wanted to file for divorce.  And I even patronized her by going to two sessions before I filed, but during those sessions, I heard the same thing that led me to believe there was no chance of getting her to understand how I felt as a cancer survivor.  All I heard was blame directed at me.

Over my twenty four years counseling cancer patients and their families, this is all just too common.  Pride keeps us from wanting to expose our laundry to any outsider.  But the option of “just getting over it” does not work.

I believe you are totally blessed if you have someone in your life who will be completely by your side, not just through the battle, but help with the scars that grow from within.  And they do exist.  I am a romantic at heart, and I know this can happen.  But I cannot stress, please do not underestimate the emotional toll that a cancer diagnosis and journey can take.  Be strong enough to admit when you need someone to lean on.

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.

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