Paul's Heart

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.

Cancer – An Uglier Word Than…

When you first mention the phrase, “ugly word”, my mind immediately goes back to the comedic bit by George Carlin, and his “seven words you can’t say on TV.”  To me, those words are just that, words.  They cannot hurt physically, though they have the potential to hurt emotionally.  To me, cancer is an even uglier word than those recited by Carlin.  I have every right to make that claim, because just as the other words can hurt emotionally, so can cancer.  But cancer hurts physically as well.

I can make this claim.  Besides coming into my life with Hodgkin’s Lymphoma back in 1988, cancer has decimated my family.  My paternal grandmother died from cancer of the gall bladder.  My paternal grandfather died from complications of lung cancer.  My maternal grandmother survived breast cancer only to succumb to ovarian cancer.  My sister passed away from a relapse of aplastic anemia (a form of leukemia) after having been in remission for over three decades.  And this past May, I lost my father to lung cancer.

I have had many more friends pass away from cancer and have known many more who have died as well.  Yes, I get to state that cancer is a very ugly word.

Over the years, there have been many campaigns used to draw attention to cancer.  “Save The TaTa’s” is a campaign for breast cancer, a campaign I support (figuratively, not literally – no pun intended).  While it may lack “taste” to some, it does get attention, which of course leads to awareness.

A couple of years ago though, a new campaign began.  I first became aware of it while on a Facebook page for Lymphoma.  A young woman had been celebrating the announcement of their remission.  A picture had been taken of her holding a sign in one hand, and her other hand was posed with her middle finger sticking up with the old one-finger salute.  I know where the finger was directed because the sign said simply, “F*ck Cancer!”  Clearly she was making a statement of defiance.

Normally, when we hear or see the F-bomb, it is generally used in slang or some obscene sexual reference, and this is not normally acceptable used by society.  But I personally feel, when it is used an expression of anger or defiance, it is emotion that needs to come out.  Dropping an F-bomb on Cancer to me is not a “dirty use” of the word.  Cancer patients have every right to be angry, and I definitely want cancer patients to be defiant to cancer.  Cancer expects us to just roll over and die, not fight back.

Since the time I discovered that FB page, it has grown so much.  And it is now a movement with over 171,000 “likes”.  These are people who have stood up to cancer, or will do what they can to stop cancer.  But before you judge them, just because they use a word unaccepted by society, check them out:

https://www.facebook.com/FxckCancerUSA

I do not normally use language considered obscene.  I do not really need to do that when I have conversations.  But when it comes to taking on one of the ugliest words in the world, cancer, I have no problem saying “Fuck Cancer.”  I have more than earned my right to say that after what cancer has done to me and my family.