Paul's Heart

“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.