Paul's Heart

Cancer – “Just Move On Already”

A person who has to deal with cancer, is dealing with one of the most difficult things to threaten their life.  Changes occur to both the body and the mind.  Cancer changes the way our body feels and reacts.  Cancer changes the way we think, permanently.  For some, the thoughts that are changed are life changes… “I’m going to live a better life” or “I’m going to do things differently, for the good”, not taking anything for granted.  But for some, thoughts are dominated with paranoia, about dying, about the cancer coming back after remission has been declared, and thoughts about mortality.

One thing I wish my oncologist would have told me, is that I would never be done with cancer.  Sure, I have survived it 24 years.  But after all those years, I am still dealing with cancer and the late effects that have developed in me over that time.  Then again, two and a half decades ago, I, like many others were simply lumped into a “survival rate” of five years so I am sure the thought never occurred to him that I would be around all these years later, dealing with the ramifications of my survival.

Besides surviving the cancer battle, the most important thing to a cancer patient is being able to talk about their issues:  how they feel on a particular day, concerns for their future, experiences with their appointments.  This is part of the process.  We need to be able to talk, and not just a psychologist or therapist, but to those closest to us, family and friends, and perhaps some trusted acquaintances.  But just as the cancer patient has no experience in dealing with cancer, most non-cancer people have no idea what it is like to deal with cancer, physically, or emotionally.  Perhaps, they may even have some experience, but have been left unable to face yet someone else dealing with cancer.

My father passed away earlier this year from lung cancer.  But it was me that he turned to for support and wanted only one thing from the doctors, to be a survivor like his son.  Yet when I was diagnosed with Hodgkin’s Lymphoma, my father was nowhere to be found.  We talked about this years later.  I was unaware until that moment, that my paternal grandmother had died from cancer of the gall bladder.  My father had been lied to about her illness (it was not cancer), only to watch her erode away, suffer, and die.  Eventually he was told it was cancer.  My father did not want to watch what happened to his mother, happen to me.  I do not fault him for that.  He carried that his entire life, no one to talk to about it.  That is, until he was diagnosed himself.  I wore many hats with the care of my father, but none was as important as being an ear to listen and a shoulder to lean on and vent.  In the end, it was comforting to him, that he was understood about what he was going through.

We never get over cancer.  Fortunately for most today, unlike survivors like myself in longevity, protocols now require lifetime following.  I can only imagine if that would have been applied to me.  Instead of disappearing off the planet once I hit the magical five year mark.  Had I been followed more closely, my heart, lung, and other issues would have been discovered and better managed than what I am left with today.

I do not blame her, but what did not help was my first ex-wife did not really discuss anything with me at all.  From the moment of diagnosis, and through all but one of my chemo treatments and none of my radiation treatments, she never spoke of my cancer.  And when I was finally done with my treatments, she would express frustration that I would continue to try and stay involved in the cancer world, telling people what I had gone through.  I do not fault her for this.  She did not want cancer in her world.  My cancer was gone, and so should any conversation about it.

My second ex-wife (to be), also had issues with my survival of cancer.  She got to enjoy a lot of healthy non-cancer years with me, knowing that I had cancer, but was simply not having to deal with it in the form of appointments.  But when I was diagnosed with a major blockage to the main artery of my heart, and it was discovered that the radiation therapy was the cause behind the “widow maker” blockage.  And with that, it was discovered that my cancer was coming back, but in the form of late developing side effects from both the radiation and chemotherapy.  Cancer was once again, controlling and dominating my life.

While her concern originally was genuine, I would soon realize that she too, would expect me to just move on once I was recovered.  And perhaps, had that been the only issue I had to deal with, or even at the least, had nothing to do with my treatments, then perhaps it might have been possible for me to just “move on.”  But with the knowledge that long term cancer survivors like me have the potential to develop severe late side effects even decades after treatment, once again, it was back in the forefront of my life.

I will say that the reasons for both of my divorces were not caused directly by my cancer and late effects, but cancer definitely had something to do with lighting the fuse.

I will not post about my divorce in this post, but will do so in a few days.  But long story short, both of us have moved on into other relationships.  For me, it is no longer an issue to mention I had cancer 24 years ago.  But now any relationship I begin, I am up front about the mess that my body has become on the inside.  While I look quite fine physically on the outside, on the inside, it can become quite unnerving being with someone you know has the potential for multiple emergency situations.  I have found someone who understands what I have gone through, and accepts me.  She also watches out for me, to make sure that I do not overextend myself physically unlike in the past when I pushed myself beyond limits because I felt it was better than to sacrifice.

I do not know why my two ex-wives felt the way that they did.  Perhaps they were afraid.  Maybe they were in denial.  I suppose we should have had some sort of conversation about their feelings.  Only then, would I have been able to figure out if it was me, or them.    If it was them, then perhaps they might have been able to talk to someone.  All I know is that I found a therapist to deal with my cancer issues and clearly, it was normal not to be able just to move on.

You Are Part Of Your Cure

I am now going to contradict myself from past posts, where I say “let the doctor be the doctor” and “the doctors know best”.  Treating cancer is not just about having the right doctor to make the right diagnosis and treatment plan, but it takes a team of qualified professionals.  And one of those professionals is you, the patient.

Like a professional sports team, one player does not make up the team.  Sure, every team has their superstar, their coach, but there still are more than a dozen more players that will make that team successful.  And under normal circumstances, they will be successful.

Your cancer team is no different.  Your superstar is obviously going to be your oncologist.  He is the one that will diagnose, stage, and treat the cancer.  He is the one you can count on when the seconds are winding down on the clock.  But unless you are aware of it, there are plenty of other players on your team that you should be aware of.

The Oncology Nurse = I would recognize the oncology nurse as a starting pitcher, number one in the rotation, or maybe the goalie in hockey.  You will probably spend the majority of time with this player from administration of meds, to observation, through treatments.  The oncology nurse is the one individual who will probably learn about you best and most likely will be the one who can help you understand and differentiate what feels normal during treatments, and what might be something to be concerned about.

Psychologist/Counselor = You are going to go through a lot of emotions on this journey.  Personally, I do not recommend just any therapist or social worker.  I feel it is important to have someone to listen who has knowledge personally, or has studied of dealing with cancer.  There is a big difference in dealing with someone you know who “gets it.”

Dietician = Your taste may change during treatment.  You may need to supplement nutrition due to foods you are restricted from.  Perhaps, like me, you just have bad diet habits to begin with.  A dietician affiliated with the cancer network is good support to make sure that you maintain a good diet and good diet habits.

Physical and Occupational Therapist = Treatments are most likely going to kick the crap out of you physically by the end of your treatments.  And if you are like me, who has exercised his whole life, there is a big difference to rehabilitating yourself once treatment has been completed.  Your body has been put through a ringer.  Any surgeries have actually physically altered your body.  Any treatments may have affected your body physiologically.  In any case, the last thing you need to do is cause any more issues for your body by exercising incorrectly or pushing yourself too hard and too fast.  And yes, in some cases, you may need to re-learn how to do some thing things.

Pastoral = Briefly, if you have faith, keep it, build it, use it.

Of course, for a team to be successful, it needs a coach or a manager.  No, they are not the ones who throw touchdowns, or hit homeruns, but without their decision making, the teams would not be successful.  And guess who the coach/manager is of your cancer care?  You are.  You have the say in the deciding the options that are available to you.  You are the one that has to evaluate your way body feels from any kind of side effect.  You are the one that makes the call.  The days are gone, where the doctor simply says, “take two aspirin and call me in the morning.”  Medicine is overwhelmed today and there are very few doctors anymore who spend enough time with you to get to know you.  Today, most doctors function out of clinics, so you are no longer even guaranteed to see the same doctor when you return.  Not being able to see the same doctor, who will know you every time you are in their office is a big deal.  I have had the same family practitioner for over 25 years.  I will wait an extra day if necessary to see her not only because she knows me so well as her patient, she also respects me as a member of my treatment team.  In fact, all doctors I deal with, know that I am a member of the treatment team.

No Need To Panic – The Difference Between Paranoia And Routine

There is always a moment when I cringe, the moment someone asks me the question, “how did you find out you had cancer?”  Unlike the more familiar cancers such as breast cancer (lump) or skin cancer (oddly shaped blemish or mole), a blood cancer such as lymphoma and leukemia do not give the obvious signs which accelerate the opportunity for diagnosis.  As I have mentioned in prior posts, my original family physician, who is not an oncologist, originally diagnosed my Hodgkin’s Lymphoma, as a common cold.  After all, he had seen plenty of patients over his career, who had a similar symptom, and that is all that it was.  But because lymphoma is rare, it makes it complicated to diagnose.  And with lymphoma, treating it, and curing it, time is something you do not have time to spare.

So getting back to “how did I find out?”  Unlike other symptoms that I have had later on in life after I became aware of my compromised health, as a healthy young 22-year old, I really do not recall any particular moment before discovering a swollen lymph node under my left ear.  I do not recall any other symptoms that would have allowed me to share with my doctor.  A simple “itch” at that one particular moment, led to me discovering the swollen lymph node.

Now, as you are reading this, there is a good chance that you have now begun feeling around your neck area for any signs of a swollen lymph node.  This is why I cringe when I am asked the discovery question.  Because it is rare that the swollen lymph node is anything more than the body doing what it is supposed to.

A cold is a foreign substance that needs the body to use its immune system to fight that substance.  Your immune system is your lymph system.  The lymph system consists of not just lymph nodes which are located throughout your entire body from head to feet, but also certain organs of your body like the spleen, thymus, and tonsils.  Of course, just as you have blood vessels, you also have lymph vessels to help in the process of dealing with most illnesses when your body is faced with them.  The system is much more complicated than I can put in a post, but just know that it is perfectly normal to have a swollen lymph node when dealing with common illnesses.  A swollen node is not an automatic diagnosis of cancer.

A normal working lymph system will produce antibodies to help your body fight what is ailing you.  We sometimes get vaccines to help in this process (like for the flu and pneumonia).  And other times we need prescription medicines.  And under normal circumstances, the body will do what it has always done.  But some times, the infection of the lymph node is just too great for the body to fight by itself.  One thing to keep in mind, a swollen lymph node does not always cause pain.  Like I said, mine was an itch.  I have heard stories from others about the pain being so great, and there is usually more involved to the diagnosis at that stage of the disease.

So here is how I follow up the question, “how did I find out?”, and it is common sense.  If you discover a lump or swollen node, do not panic.  Contact your doctor immediately.  I know.  I know.  My doctor misdiagnosed me.  But things are much different today.  Awareness has become just as much important as the cure.  Doctors have so many more tools at their disposal, and they are definitely the ones better to make the diagnosis, cold, infection, or something else.  But whatever you do, tell your doctor everything that is not normal with your body at that moment to accompany the obvious symptom, a swollen node.  Then let your doctor do their job.  Do not be surprised though, if you are told “it’s probably a cold or infection” and you are sent on your way with a prescription.  This is normal.  Believe me, you will know soon enough if it is more than that as the medication, although showing slight improvement, will not resolve the issue, then it could be something else.  Hopefully though, you have a doctor who is more involved with your care, and willing to take extra steps ahead of time, like perhaps bloodwork to check white cell counts to see if anything goofy is going on with your immune system.

Bottom line, if you find a swollen node, do not panic.  See a doctor.  Do not diagnose yourself.