Paul's Heart

Life As A Dad, And A Survivor

Archive for the month “September, 2014”

09 Sep 2014

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.

Posted in Cancer, Education, Side Effects, The Heart | Leave a comment
08 Sep 2014

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.

Posted in Cancer, Education, Family and Friends, Inspired By..., Side Effects, The Heart | Leave a comment
07 Sep 2014

Happy Grandparent’s Day! A Grandparent That Made A Difference To Me


Conversations about cancer “back in the day”, like during the 50’s, 60’s, and 70’s were quite rare (I was only around for two of those decades – trick statement, you can figure out easily which one).  Cancer back then, nearly always carried a negative stigma, with many thinking cancer was contagious, which of course is one of the biggest myths with contracting anything from someone being treated for cancer with any of the drugs residual effects a close second.  No, sadly, the only time I really heard cancer was when someone had died from it.

In the Summer of 1986, an employment opportunity came up for me which caused me to take leave from college, quite stupidly with only one semester to go from graduating.  But I was young and stupid, and was driven by an opportunity to make a lot of money – what young and stupid person would not have wanted that?  It took me to the Pocono area of Wilkes Barre, Pennsylvania, a very friendly little area, and one with a very reasonable cost of living.  But to get started, I needed some help.

My grandmother, everyone called her “Grandma” whether you were her actual grandchild lived to help others.  This is all I knew of her, and to this day I live my life the same way that she taught me – take care of others and they will take care of you in your time of need.  She believed it, and lived it.  I needed to secure an apartment, but with no money to do so, she loaned it to me.  Now that by itself might not make such an interesting story.  What grandparent would not help their grandchild?

I had just moved into my apartment, about a month after my grandmother helped me secure the apartment.  The telephone rang.  It was my mother informing me that my grandmother’s surgery for breast cancer went well.  (Cue the screeching train wreck sound!).  Now you have to understand, my family had always been notorious for keeping things to themselves (prior to the days of my cancer).  We did not talk about emotions, and we most certainly did not talk about bad things like cancer.  The only thing I remember about that phone call was the anger at my grandmother finding out that she had cancer, and instead of worrying about herself, she instead put me up in an apartment.  But that is how she was.

I immediately drove back home to visit with my grandmother.  But after the two hour drive, I had a lot of time to settle my emotions, to get back in check that this was how my grandmother was.  The anger of why she would take care of my need before taking care of her own, had changed to the priority of getting her well.  I loved my grandfather, her husband, though I only knew him briefly before he passed.  But my grandmother was my life.

Somehow she expected me to show up in her hospital room.  I recall having a tear in my eye, being brushed back by the “it’ll be alright” smile on my grandmother’s face.  At that moment, she said, “at least I will be able to wear some of your shirts during my recovery” making light of an unpleasant situation as well as making me aware that she had gone through a mastectomy.  And of course, no grandson wants to talk boobies with his grandmother, but let us just say, she was serious, she was going to be able to fit into my shirts now, needing a button down shirt for her recovery and of course my frame up there did not stand out like hers.

Of course, then it was back to the usual silence.  I had never really heard any further about my grandmother’s cancer.  I honestly do not know any chemo, if any, she received.

But in November of 1988, I found myself in need of an oncologist for myself as I had just been diagnosed with Hodgkin’s Lymphoma.  And since I knew absolutely no one else who had ever taken on cancer, and beaten cancer, I could not have asked for a better inspiration than my grandmother.  After all, she was a couple of years into her recovery, and clearly the doctor who saved her life, would be the one that I challenged to save my life.

Long story short, that positive approach I believe made the difference in not only my longevity, but in my ability to deal with treatments and eventually reach remission.  She stood by me the entire way, and yes, we did not really discuss anything about the journey.  We did not have to.  We just knew.

Ten years later, at the age of 83, I lost my grandmother to another round of cancer, this time ovarian.  Unlike the time when she was diagnosed with her breast cancer, my experience as a cancer patient myself made me more sensitive to the things going on with this battle.  But no matter my experience, it was no match for my grandmother.  The one thing she was great at, was protecting those that she loved from harm, whether it was physical or emotional.  The words of the surgeon made me very suspicious when he told us that he had gotten all the cancer, but then went on to describe his plans for my grandmother with preventative treatment.  The length and amount of treatment he described to me, made no sense as preventative, but rather actual treatment.  Something was clearly wrong.  But to this day, we will never know.  The day before my grandmother was supposed to start chemo, she passed away.  She knew this day was coming, and succeeded in keeping us all from being sad, watching the days go by, wondering if that was going to be the last day, instead, enjoying the life we had with her.

I sat across from her in her home the day before she passed.  She had just gotten her hair cut very short for us to get used to when her hair would start falling out from the chemo.  But I noticed her treatment books (how to deal with them) had not been opened.  And although I am jumping ahead, unbeknownst to her sister and roommate of over forty years, she had already picked out clothing for her to be buried in, even my aunt was unaware.  But as I sat with my grandmother, I looked over at her, clearly her thoughts were else where.  But in my final conversation with her…

“what’s the matter grandma?”

“I just want to get this over with.”

We just sat there in silence for a few minutes.  Then I got up and left to run some errands.  The next day I was at church running a function for the youth group I was in charge of.  A telephone call had come that my grandmother had been taken to the hospital, fluid was filling her lungs.  In defiance, I changed my priority to want to be by her side, instead of my responsibilities to the youth group, and this should have been the thing to do.  I was told, “your grandmother wants you to finish what you are doing.  She will be okay.  She isn’t going anywhere.”  Two hours later, I got another phone call.

I miss you so much.

Posted in Cancer, Family and Friends, Inspired By..., Side Effects | Leave a comment

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