Paul's Heart

Life As A Dad, And A Survivor

Archive for the category “Side Effects”

Normal Life – Peter’s Story

This is Peter.  Peter is a fellow Hodgkin’s Lymphoma survivor like me.  He also deals with late effects from the treatments he received decades ago.

Peter Fox is a contemporary artist whose work has been exhibited throughout the United States and internationally. Diagnosed with Hodgkin lymphoma at age 17, he was treated with mantle radiation and cured. He lives in Queens, New York, with his wife, Cibele; son, Sam; and their dog, Nikki. When not in his studio, he loves being with family and growing giant sunflowers in his garden and pineapples on the windowsill at home.

Recently, he published his story in a quarterly newsletter, “Bridges”, published through Memorial Sloan Kettering Cancer Center (as I have done also).  I asked Peter if I could share his story on “Paul’s Heart”, and he said yes.  So, here is Peter’s story, “Normal Life.”

Normal Life by Peter Fox

“A branch which has been partner of the tree’s growth since the beginning, and has never ceased to share its life, is a different thing from one that has been grafted in after a severance. As the gardeners say, it is of the same tree but not of the same mind.”                         — Marcus Aurelius

Ten years after treatment for Hodgkin lymphoma as a high school senior, I was told I was cured and to go live a normal life. I took it to heart and did my best to live from that moment as if nothing had really transpired at all. I accepted no physical, emotional, or psychological limitations and rarely told the story except to those who encountered scars. I was embarrassed to mention it, like complaining about a skinned knee. In hindsight, the normal life advice and my response to it were both pretty absurd. I’ve struggled tremendously with alienation, anxiety, and depression from the experience but never sought real help. While I was more health conscious than others and had many false alarms about lumps, infections, etc., I always suspected it was hypochondria and a personal failing. It never occurred to me in the 35 years following radiation treatment that my skinny neck and bony torso signified more than a regrettable, congenital laziness regarding the gym.

I didn’t make a clear connection between cause and effect until a few years ago, when long-term physical side effects of treatment (stooped posture, dizzy spells) began to impact my life. It was after a scary episode of double vision at the playground with my son — I thought I was having a stroke — that I first searched the words “radiation treatment long-term effects.” Google led me to the sudden awareness that there were a whole raft of health issues associated with radiation treatment, and then to Hodgkin survivorship groups, which in turn directed me to the late effects clinic at MSK.

I have difficulty thinking of myself as a survivor. We all survive every day, and others face greater obstacles daily than I ever have, regardless of health. Though in denial about the physical side effects of my treatment, I always knew that my entire adult awareness and engagement with reality was shaped, for better and worse, by my cancer experience. Confrontation with mortality creates its own focus and set of priorities. Mine took place on the cusp of adulthood and thus was foundational. Pursuing art as a serious career followed from the news that I was cured and had a future to prepare for, something I hadn’t allowed myself to expect. I’d drifted until then, directionless, commitment averse, bags packed, waiting to fall. But I didn’t fall, and my truth is that the view from the edge is more wondrous, sublime, and beautiful than I can begin to describe. I’m lucky every day. Even if I could erase the rest, I’d never give that back.


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.


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