Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Education”

Cancer And Sex


Okay.   I know what you are thinking.  If you have cancer, the last thing on a person’s mind should be about having sex.  But speaking from only a “man’s perspective”, even in our darkest days, sex is still going to be important.  I recall sitting across from my cardiac surgeon the week after my open heart surgery back in 2008, one of the first questions that I asked him was, “how soon will I be able to have sex?”  First off, I need to state, at the age of 42, I was nowhere near ready to surrender one of the things in my life I truly enjoy.  Dr. P’s response was not in words right away.  First, he got off of his stool, got down on the floor into a “push-up” position and began to illustrate that once my breast bone healed, I would be able to do “push-ups” again.  But in the meantime, I might prefer to just sit back and enjoy the ride.  Wink, wink.  In such a dark practice where Dr. P. has probably lost his share of patients, I was pleasantly surprised that for a “specialist”, he had a sense of humor combined with his empathy.

But going back to 1989, I underwent a procedure called a staging laparotomy for staging my Hodkin’s Lymphoma that I had just been diagnosed with a couple of months before.  This procedure would determine the course of treatment for me but would also change the way my body appeared, and responded to events, for the rest of my life.  Any woman who has had a C-section, can verify the abdominal pain from the horizontal cut from one side to the other.  The incision made for the laparotomy was not different in length, only it was horizontal from breast bone to just on the other side of my belly button.  My spleen was removed, some lymph nodes were removed, and a biopsy was done on my liver.  Up until my kidney stone a couple of years ago, the laparotomy was the worst pain I had ever felt in my life.

Once the pain began to subside about two weeks later and became tolerable, yep, my mind turned back to happier things, in spite of my pending cancer diagnosis and treatment plan, sex.  But my abdomen was in such bad shape.  If you have ever taken karate or yoga, you hear the term “chi” or reference to your “core”.  Without strong abdomen muscles, you will barely be able to sit up straight.  Mine were cut apart for the surgery.  Even sitting back and “enjoying the ride” was painful.  Okay, so no sex was going to happen during that recovery.

By the end of the month, I was gaining strength back, and desire.  But right around the corner was my radiation therapy about to begin.  I had a honeymoon coming up in just a couple of months too.  While my desire was right back on track, someone else’s was not.

For decades, most people confused “heredity” with “being contagious” as far as cancer was concerned.  You could not “catch cancer” from someone.  You could inherit the genes for a particular cancer, but not catch it from another human being of no immediate relation.  And I know that this was not an issue prior to the surgery, not bragging, just stating fact.  I had sex.  But my fiancé had a real concern on her hands.  If you are a follower of “Paul’s Heart”, you know how little I knew about side effects about my treatments until decades later when they discovered them.  But she knew enough from hearing “chemo and radiation not only attack cancer cells, but good cells as well”.  So her concern, and it was legitimate, was that she could catch any of the residual affects from me during my treatments.  Case in point.

During my laparotomy, my spleen was removed.  This is the main organ that deals with your immune system.  Without it, I, like everyone else, is more susceptible to illnesses, and the consequences are far greater.  I was not able to hold my niece after she had been given her polio vaccine, because the residual of the vaccine would come out in the excrement of the diaper, and being a live virus vaccine, I would risk the exposure to polio.  Hence, until the danger would pass, I had to avoid her.  Chicken pox, flu, strep throat, can all have grave consequences to me or anyone who is asplenic.  You know one very famous person who died as a result of this situation, Jim Henson, creator of the muppets.

So it was not unusual for me to respect her fear of becoming contaminated from chemo or radiation.  After all, you wear a bib when you go to the dentist for x-rays, and the tech always leaves the room right?  And in order for me to have enjoyed sex, there is going to be something that gets released from my body, going somewhere.  In spite of my desire, her fear of what could happen was just too great.

The truth is, in most cases, there is not going to be any issue.  The first thing you have to do is deal with the desire issue itself.  You have to deal with the fact that the desire might be gone, after all, you are dealing with cancer, side effects from any surgeries and treatments.  If desire has not suffered, then, if you have concerns about the treatments and sexual relations, talk to the doctor.  Seriously, I know it sounds weird to talk to your doctor about sex, but who is best going to be able to give you an answer if a treatment has a risk of contamination?  There are always going to be other factors, especially if you are of child-bearing age.  The last thing you want to do, especially if you are a female, is to get pregnant and have your treatment schedule affected by the pregnancy.  And besides, male or female, there are enough issues to deal with than the immediate need to bring a child into a world that really needs you to focus on getting better.

Looking back, my fiancé really had nothing to worry about.  Radiation was not going to be an issue for her, in spite of the large amount I was given.  However, those who are implanted with radioactive seeds may want to wait a little for that to pass, in other words, clear with the doctor first.  And if you are truly worried about any chemotherapy residue, use a condom.  Married or not, condoms will give the assurance not only against pregnancy, but also assure that nothing will pass between the two.  But again, best to ask the doctor if there are concerns with the certain chemotherapy drugs being used.  Also, a doctor will be able to advise any other concerns (like cardiac for example) if sex should be avoided.  After all, are we not always advised to “seek doctor approval before beginning any exercise?”  So the same can be said for “sexercise”.

This is of course has been written from a male perspective.  If any females would like to chime in, please feel free to comment, or if you would not like to have it published as a comment on here, you can email me, and I will enter it onto “Paul’s Heart” anonymously for you.

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.

Standup2Cancer


This evening a special annual telethon was held, Standup2Cancer.  It is a one hour, uninterrupted telecast, broadcast on nearly every network.  The goal of the program is to raise money for the accelerated research programs for cancer cures.  This has become such a huge event, that “watch” parties are now being held.  Tonight, here in Naples, a special watch party was held by the local Relay For Life committee at a local establishment, Bokamper’s.  I was invited to be a guest speaker during the program before the telecast.  Below is the speech that I gave:

“I want to thank the American Cancer Society for inviting me to speak a few words as a cancer survivor. I am so excited to be here tonight. No, really, I am really excited to be here tonight, as anyone who has ever battled cancer will echo those sentiments. But I am really excited tonight because tonight is about an opportunity to Stand Up 2 Cancer.

We are so close to curing so many cancers. But just like the saying goes, “close only counts in horseshoes and hand grenades.” One of the main obstacles that stands in the way of finding cures for cancer is funding for research. There just simply is not enough money to fund research for all cancers, and so, many people will never get an opportunity to stand in front of you to tell their stories as cancer survivors.

So how close are we to finding cures? Conversations are no longer dominated by terms such as life expectancy, but now include the words prevention.

In 1988, I was diagnosed with a rare form of cancer, Hodgkin’s Lymphoma. This particular cancer makes up just 1% of cancer diagnosis. Yet today, it remains one of the most treatable forms of cancer with a success rate of over 85%. But you see, it still is not 100%. And that is where we need an organization like Standup2Cancer. Standup2Cancer raises funds with 100% of all monies raised going to accelerated research programs to help find cures for cancer, when other moneys for research just are not available. Funding for research for Hodgkin’s Lymphoma barely exists and is rarely questioned because of the success rate of current treatments and the rarity of the cancer. But for 15% of the people who do not survive HD, this is unacceptable. 15% means there is still work to be done. But the money for research has to come from somewhere.

Of all the struggles I have dealt with as a cancer survivor – severe late physical side effects, financial, relationships, fertility, discrimination, employment, emotional – survivor’s guilt has been the worst for me. Why do I get to stand in front of you, when so many I have known and met over my life, do not get to stand in front of anyone? Cancer has decimated my family. My grandmother died from 2 separate battles with breast cancer and ovarian cancer. I lost my sister to Leukemia. This past May I said goodbye to my father after battling lung cancer. But for me, no greater guilt exists for me, and pales in comparison to the pain and sorrow felt by the mother of a friend of mine, who lost his battle with Hodgkin’s Lymphoma this year at the age of 24, because the current mode of treatment, while curing 85% of the people, just was not safe enough for him. He received no radiation therapy and half as much of the chemotherapy that I received. This 15% is not acceptable to me which is why I proudly support the efforts of Standup2Cancer. We are so close to finding a cure, not just for Hodgkin’s Lymphoma, but safer treatments as well, and cures for other forms of cancer.  And it all starts with you.

I am living proof. The first time and the only time I ever heard the word cancer was when someone died. That was over 40 years ago. I was treated with enough radiation, that I could have eaten off the floor of Three Mile Island after the meltdown and not have been exposed to as much radiation. I was treated with a drug that was used by a middle eastern dictator to kill his people, but it treated cancer. Physically, my body has its share of late effects that came about in exchange for me surviving cancer. But I am here to tell you, progress has been made in the 24 years since. It just simply is not good enough. But after tonight, we get closer to a better and safer cure because of each and every one of you. And in memory of my friend Michael, I thank you.”

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