Paul's Heart

Life As A Dad, And A Survivor

September Is Hodgkin’s Lymphoma Month

Political correctness… I hate it.  I mean, I understand why people wish to state things using certain words, avoiding others.  And perhaps there should be no better reason to express something in a less threatening and scary manner, than using terminology less doom and gloom.

I was diagnosed with a disease, cancer.  That is what it was called in the 1950’s, 1960’s, 1970’s, definitely in the 1980’s, and I believe still into the 1990’s.  I believe somewhere around there is when cancer “stopped being recognized” as a disease.

When I met my first oncologist, these were the first words out of his mouth, “Hodgkin’s Disease is one of the most curable forms of cancer.”  And there it was, I had cancer.  I had a disease.  But as I often do, I have a proof reader look over many of my pieces that contain information and facts about cancer.  When people read stories like mine, they are looking for information and experience and I want to make it accurate.

This year, something odd had happened.  In one of the speeches I wrote for Relay For Life, my proof reader had edited my speech, changing every mention of “disease” when it was preceded by “Hodgkin’s”, from “disease” to “lymphoma”.  There is no argument that Hodgkin’s is a form of lymphoma, a cancer of the lymph system.  But it is also known as a blood cancer.  And while I am puzzled by the decision to change “MY” wording of “disease” to lymphoma, believe it or not, there are actually discussion about whether a “blood cancer” (not just lymphomas but also leukemias) should be classified by something other than “cancer.”  That is a whole other post.  Cancer is cancer.  Whether it is a tumor or cells in the blood, the treatments are horrible and the prognosis are both good and bad.  Do we really need to argue over what is cancer?

Look at what is happening in society when we have a non-medical publication like Consumer Report, write an article stating that perhaps we should not screen as early or as often for certain cancers.  One thing that has always stood out in my mind, and have never forgotten, was being told “timing is everything, the earlier cancer can be caught the better.”  Science and medicine has proven this.  But a writer in a magazine states that might not just be so.  While it is true, screening might catch the cancer early, is it worth all the worry and hype and stress that it causes a person who is fortunate enough to not get the diagnosis of cancer?  Bottom line, anyone arguing over the value of cancer screening should just be glad that we have those discoveries and options available to us.  Unfortunately, the bigger picture which never gets mentioned is the costs that would be saved by not screening as many patients.  Sure, it would be hit or miss, determining who would need the screening, and of course some would not get caught.  But if missing one person’s early diagnosis meant saving millions of dollars, then that decision is worth it.  WRONG!

I was lucky.  I did not have the opportunity for early screening. but my Hodgkin’s Disease was caught early enough, even at stage 3B.  I was 22 years old.  The first patient I counseled with Hodgkin’s Disease was a 14 year old girl.  You can find my story about her called “Jennifer’s Story” under Pages.  14 years old.  Eight years younger than me, but she was staged at 4.  But Jennifer died.  Her cancer was not caught early enough.  My father now in the second week of his first cycle for treatment of lung cancer had his cancer discovered early not because of screening, but because his primary care used his best judgment and ordered a very expensive CT scan for a chronic cough.  His staging started out at 1 but through testing and biopsies was moved up to 3.  But his doctors believe his prognosis will be excellent.  Had he not had that cough, there was no planned lung screening for him, in spite of being a smoker for over 50 years and working in a quarry inhaling all kinds of dust.

Cancer is scary.  For too many, cancer is equated with dying.  Nobody knows that more than someone who has gone through the experience.  So I ask for understanding that I do not want to lessen my history by taking a word that sounds awful, disease, and substituting it for something less frightening.  There are bigger concerns in the world of cancer, those other than the medical professionals we trust to cure us are pushing to reverse the progress in the battle against cancer, and the only reason that can have any justification, is money.

September is Hodgkin’s Lymphoma Month.  I know that I will see lots of websites making mention of this, and many will have photos of purple or lime green ribbons as symbols for this disease.  The colored ribbons and rubber bracelets are a great idea to bring awareness to the cancer I had faced.  But there is no better awareness than seeing someone who actually faced cancer, and survived it.  Look at the survivors all over the world.  There are millions of us.  I have met hundreds of Hodgkin’s patients and survivors, and over a thousand other cancer patients and survivors.

For the sake of others who are just being diagnosed, or are in the middle of their treatments, or approaching the end of their cancer journey, it is because of awareness such as this month is dedicated to the cancer I faced, that there are newer and more effective treatments with better promises for success.  And since we do not have a 100% cure for this particular cancer, more efforts still need to be made to find that one option that will allow everyone to hear the words, “you are in remission.”

I had Hodgkin’s Disease.  I am cured of it for over 23 years.  And…

“for those in remission, I will keep looking in my rear view mirror to make sure you are still following me.  And if you are not on that road yet, I will drive slow enough for you to catch up to me.  But hurry up would you?”

 

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