Paul's Heart

Lymphoma – Rare And Complicated

Hodgkin’s Lymphoma 3bNS

That is a fairly simple grouping of letters and words.  But they are much more complicated than that.  Yes, that was my diagnosis, but it would also determine the treatment modes to use.

There are so many determining factors in how to fight this rare cancer.  The cancer itself is rare enough, affecting just 1% of all cancer diagnosis.  But when broken down…the decision on which treatments to use, and which side effects to risk, the individual characteristics will make the biggest impact working along side the body’s own physiological issues (height, weight, metabolism).

The obvious part of the equation, is figuring out Hodgkin’s.  For me, it was seeing the Reed-Steinberg cells in the pathology from biopsies that were done.  There are other diagnostics for claiming Hodgkin’s, but all involve B lymphocytes – a white blood cell meant to help the body dispose of garbage in our bodies (I have simplified the definition).  Easiest way to think about it, your lymph system is what fights your illnesses.  B lymphocytes help that process along.

Once the diagnosis is made, then the classification and stage needs to be determined.

There are four types of Hodgkin’s.  Ranked in order of commonness, most common is Nodular Sclerosing, or as you saw in my grouping, NS.  NS makes up about 75% of Hodgkin’s diagnosis, followed by lymphocyte predominant, mixed cellularity, and the least common, lymphocyte depleted which makes up only 5% of the diagnosis.

Staging is also important because not only do you need to know how aggressive the disease is, you need to know where it is located.  With numbers ranking 1-4, with one being the least serious to 4 being the most serious, here are their definitions:

Stage 1     only one lymph node or area is involved

Stage 2     two or more nodes or areas located on the same side of the diaphragm

Stage 3     disease found in nodes on both sides of the diaphragm (even though the spleen is an organ, it is considered part of the lymph area.

Stage 4     other areas of the body involved (like lungs, liver, bone marrow)

I put Stage 3 in my title because that is what is says on my reports.  But knowing that my spleen was fully involved, pretty much seals it that I was stage 4.  But I have one more letter in my equation above, which really only serves to say it is bad, or worse.

A simple two letters are added, either “a” or “b”.  Which means “with symptoms” or “without symptoms”.  These particular symptoms that are being referred to are common, fever, night sweats, or significant weight loss.

Once the doctors have diagnosed, classified, and staged the Hodgkin’s, then it is time to determine the best mode of treatment.

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.