Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “The Heart”

Why Bother Using The Word Cured?

Cured.  The only thing a person wants to hear after being told they have cancer.  And it should be that simple.  You get a cold.  Take some meds.  You recover.  Broken bone.  Gets set.  Heals.  But why is it such a problem to nail down the word “cure” when it comes to cancer?  I can only speak from the diagnosis of Hodgkin’s Lymphoma.  I have no idea if patients of other cancers are given the same speech that we as HD survivors are given.

This is exactly how it went for me 30 years ago when I was diagnosed, in the words from my oncologist:

“I don’t like to use the word cured.  Instead, once you hit five years, in remission, it becomes less likely that it will come back.”

So, that should mean that I am cured, right?  But why would he not just say that I am cured at that point?  I was willing to go along with just saying “remission” for five years.  Why could I not say I was cured once I hit the 5-year mark?  I want to use the word “cured” dammit!

My signature of emails that I communicate  to other cancer patients, includes the words “in remission”.  I used to use the word “cured”, but unfortunately, I knew too many who had either relapsed or developed new disease.  Which is not to say, that either is extremely common to occur, but rather, as people only reach out when a need arises, the percentage of people who fall into this category is still much lower than those who do not relapse or develop new disease.

Here is how I see it.

In November of 1988, I was diagnosed.  I began radiation treatments for what I believed I was staged at 2a.  At the completion of those treatments, I was told I was in remission.  By June, I was dealing with Hodgkin’s again, but now staged at 3b.  I had disease below my abdomen which either was not noticed before, or had been there all along.  Doctors did not say if it was new, or did I relapse.  It did not matter.  I underwent chemotherapy.  Again, I was told I was in remission.

And so I waited.  Month to month.  Year to year.  Hoping to reach that five year mark, so I could use the word “cured”.  I want to say everything was laid out to me as far as concerns: relapse, new disease, secondary cancers, and for the moment, at least the next ten years, this was all I thought about, unaware of just what was developing in my body as a result of being exposed to over 4000 grays of ionized radiation (trust me, this is bad, look it up, and I actually know people who had higher exposure), and toxic treatments using drugs such as Mustargen, Bleomyacin, and Adriamyacin (again, look up to what doctors now know about how bad these treatments are, especially in the long term).

As each year went on, and another year I got to hear “still in remission,” my anxiety about a relapse began to lessen.  And yes, once I hit the 5-year mark, it disappeared.  And so did I.  My doctors no longer had any need to follow me up anymore.  I used the word “cured”.  Why would I not?

I am approaching my 28th year cancer free next month.  Why can’t I use the word “cured?”  So what would it be called if Hodgkin’s came back?  New disease?  A relapse?  I suppose it would all depend on the cell structure and typing, if it was identical to the pathology from thirty years ago, probably a relapse.  But if a different pathology, then new disease.  And what about the secondary cancer?  While fingers would point to my HD history as an increasing factor, at the very least, they physiological change to my body and its immune system as a result of all the trauma and treatments would at least give me understanding as to why.

Of course, as I have frequently posted here, I have more than a dozen diagnosis related to my Hodgkin’s history that I became all too aware of back in 2008 with the need for life saving open heart surgery.  But at no time, was I ever fearful of my Hodgkin’s coming back.  That is, until 2010.

An episode of extreme pain, one that would result in me passing out from the level of pain, would have me ending up in the emergency room, with the following conversation:

Dr.:  I have good news and bad news.  The good news is, your Hodgkin’s is not back.  The bad news is that you have a 6mm kidney stone.

I had to do a double take.  Did he just say my “Hodgkin’s is not back?”  Of course it is not back.  It has been 20 years, why would it?  But here I was, in my reality.  That even after all this time, the first thing that will be looked at with my history, is the possibility of my Hodgkin’s being back.

I have seen so many different interpretations of this consideration, cured or remission.  I guess it is all about how you want to look and consider it.  But as one fellow survivor pointed out, for many of my survivors, they may be blessed without having gotten knocked to the floor with a late developing side effect, or at least, be oblivious as to why their body is doing or acting a certain way, or as many of us have found out, better to know and understand why, and how to adjust so as to at least slow down a process (it cannot be reversed) that will always progress and worsen.  I am not saying there is no future at all.  But at least knowing my health issues, and how to treat and or prevent episodes has made a huge difference in the quality of life.

And yes, that kidney stone was bad news.  I wrote about it a long time ago.  Check out “Birth Of A Kidney Stone” in my “pages” section of the blog.

So yes, even after all this time, because it has never ended, I use the word remission.  And I am okay with that.


“Life” Support

If there is one thing I have learned in my nearly 28 years as a cancer survivor, is the importance of emotional support in any kind of recovery or treatment process.  Although I will tell you, at the original diagnosis of my Hodgkin’s Lymphoma, the last thing I wanted, was anyone near me.  Just as unprepared as I was to deal with having to fight cancer, I was also just as unprepared to deal with the onslaught of “super caring” from everyone.  In fact, at one point it became so overwhelming for me, causing me to isolate myself.

But over the years of my survivorship, especially being trained as a counselor for cancer patients, as an outsider, I have seen both the good of family support, and I have seen the bad of neglect and denial.  I have personally met so many families over 28 years.  Each family unique in their make-up of support network.  Some were so inspirational with their support, and others were just so tragic.

One of my fellow survivors was a teenager when she was diagnosed with Hodgkin’s.  She had a boyfriend who stayed by her side through the entire course, never wavering in support, which at times, were quite critical.  Upon news of remission, they remained together, eventually becoming engaged, to be married this Spring.  This young couple has been through so much already, but their support of each other is quite clear.  And I wish them happiness forever in their future.  And should they have to deal with any crisis, I know they will stand by each other’s side.

Another long term survivor like me, married her high school sweetheart.  Decades later, they have a beautiful family with children who have no knowledge of her cancer journey, but are all to familiar with her survivor health issues.  Several years ago, their family was challenged, near fatally, when she was involved in a car accident.  Her health issues were complicated enough, without the trauma of the accident.  But there was her family, by her side the entire time.  Her recovery, the only thing that matters.

I have many stories such as this.  Unfortunately, I have too many that are quite the opposite.

A husband wakes up in the intensive care unit, following emergency heart surgery, hooked up to all kinds of machines.  Panicked as to what had happened to him, made worse by the fact that his wife was nowhere to be found, the nurse did all she could do to calm him down and assure him that he will be fine, the worst over, and hopefully the wife  would appear soon.  But she did not.  She was out partying.  Several hospitalizations later the spouse is still in denial of the serious health issues faced by this cancer survivor.

A wife struggling with a myriad of health issues that have developed over time as a result of treatments for cancer.  Doctors have a hard time finding cause, and lost at a treatment plan for how to improve quality of a life, that will never improve physically.  The wife is made to feel that since her issues are not obvious or textbook and cannot be cured or reversed, she should just pick herself up and do the best she can.  As a long term survivor in this situation, I can tell you this is easier said that done.

Another spouse, was treated as an inconvenience, either due to lack of stamina, or a flare-up of one their late effect issues.  Worse yet, treated as if the issues did not even exist.  His spouse only concerned about the image of disappointment by the lack of appearance at a function.

Then there is the spouse who is jealous, jealous of all the attention the cancer survivor with severe health issues (actually this can apply to any patient dealing with a severe chronic issue).  This spouse is one who is likely to manufacture their own “illness” which ironically is an illness, just to take away the attention where it is actually needed.  This particular spouse would “trump” their spouse’s legitimate health crisis with her own.  As another legitimate crisis would arise, the spouse would develop another manufactured issue.  This cycle would never end until one of them would.  The sad thing was, one spouse would have given anything not to have to deal with the realities of side effects from treatments that saved his life, never to need a doctor again.

I guess the thing that makes it frustrating for me as a counselor, is that I see all the other families who support each other without question.  And I see the remarkable quality of life that my fellow survivors can enjoy, in spite of their issues.  And this applies probably 80-85% of the time.  But it is the other extreme, when there is lack of support, either by denial, ignorance, and yes, even jealousy (attention paid to the patient) that frustrates me most.  You would think all that any family member would want is for their loved one to recover or heal.  Though only 15% of the time, when put into a different number of the actual survivors I have met over my lifetime, it is way more than a handful who lack the support of the significant other or family.  I would count at least 100 of fellow survivors in this situation.  And that is 100 too many.

A family should support each other.  Spouses are supposed to be there through sickness and health.  Sadly for some, their own selfish needs outweigh the care and support needed by their family member.

Does It Really Make A Difference “How” or “Why”?

Surely it has happened to you at some point in your life.  You spill a drink, and not just any drink, but one that will leave a huge and permanent stain, and definitely only get worse the longer it sits.

There are all kinds of hacks to clean up a spill that will cause a stain.  But they all rely on how quickly you respond.  If done immediately and correctly, perhaps there can be nothing noticeable remaining.  As the liquid sits, the stain will become more difficult to deal with.  And of course, to do nothing, well, say goodbye to the carpet then.

This is not just a metaphor.  This is a life saver.

Do you stand there and wonder how it happened?  Why it happened?  What you could have done differently so that the drink would not have spilled in the first place?  Does it really make a difference once it has occurred?

I was 22 years old when I was diagnosed with Hodgkin’s Lymphoma.  To my knowledge, I am the only person in my family history to develop this type of cancer.  I had five other family members who had battled a different form of cancer, all have passed away.

I am on several social media pages for cancer as well as life after cancer.  Usually two or three times a year, a discussion comes up wondering about the cause of Hodgkin’s Lymphoma.  While we know there are hereditary possibilities with certain cancers such as breast cancer, dietary influences when it comes to colon cancer, and of course smoking linked to lung cancer, there are no confirmed actual causes of Hodgkin’s Lymphoma.

There are similarities however, amongst many of us, in regard to our health histories that should not be ignored.

Please read this next sentence carefully, very carefully.  Most of us who have had Hodgkin’s Lymphoma at one time or another, dealt with the Epstein Barr virus.  THIS IS IMPORTANT!!!  This does not mean that everyone who gets EBV will get Hodgkin’s.  Like the lesson taught in school, “all mammals are animals, but not all animals are mammals,” the same applies here.  I have never been tested for the Epstein Barr virus, and with my Hodgkin’s having occurred almost 30 years ago, if I got the test done, I am pretty sure I would test positive for having had it.

But the EBV does often lead to another illness, mononucleosis, “mono.”  And again, though just as prominent among Hodgkin’s patients and survivors, many of us have had mono, though not as numerous as just having EBV.  Now the same rule applies as with the EBV, not everyone who gets mono will develop Hodgkin’s.  And considering how prevalent a diagnosis of mono can be, Hodgkin’s is considered rare with an average 50,000 diagnosis each year.  So, sadly, at best, EBV and mono appear, or are at least looked at as just coincidences.  Just as a matter of fact, I was diagnosed with mono at the age of 18, four years before I was diagnosed with Hodgkin’s.

Agent orange is a mixture of an herbicide and chemicals, most popularly used during the Vietnam War, having exposed so many to its toxicity.  And for several long term survivors of Hodgkin’s Lymphoma, another similarity, from exposure.

Then there are also conversations about “clusters” or “hot spots”, locations with higher incidents of diagnosis of Hodgkin’s Lymphoma.  In my early days of survivorship, I had first learned of this situation, concerning areas of Ohio.  I have since learned of other areas, from Los Angeles to Ohio to New York to Norway.  Again, there seems to be a causality due to exposure to chemicals such as Benzene.  There are many of us who lived near Three Mile Island (though I know some who lived closer to TMI than I did when the crisis occurred back in the 1970’s) so radiation is yet another coincidence.  I had even seen reports narrowing down a cluster to a particular high school.  But in the end, these are all just treated either as numbers, or coincidences.

Ultimately, if I really wanted to pinpoint anything, especially with Hodgkin’s being a cancer of the immune system, I would point a finger at stress, not necessarily as a cause, but definitely a trigger.  Like many other things I have had to deal with medically, my events were all preceded by higher amounts of stress than normal.  And what effect does stress have on the body?  It lowers the immune system’s ability to respond and defend.  At the time of my diagnosis, I could not have been under more stress – a challenge I would well exceed fifteen years later.  But again, I want to stress, no pun intended, stress does not mean you will end up with Hodgkin’s.

In the meantime, for those of us in this world of Hodgkin’s, are you letting that “stain in the carpet” sit longer, or have you just taken care of it and have moved on?  To obsess about the “how” or “why”, especially in the beginning of the Hodgkin’s journey can cost valuable time in regard to treatment.  And as most of us HD survivors will tell you, time is critical in treating Hodgkin’s.  And to obsess about the “how” or “why” in survivorship, will only mean that we are not paying attention to the things around us that should matter more.  Sure, it would be nice for closure, to have the “a-ha” moment that we could tie our Hodgkin’s to.  But in reality, I do not see this in my lifetime, which I am hoping for another 30-40 years.



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