Paul's Heart

I Am Suing You For Curing Me

I saw a commercial on television the other day.  It was a law firm, advertising its services to those who suffered baldness from chemotherapy, a well-likely side effect.  Of course, the commercial did not specify the conditions that needed to be met, for instance, that the baldness had to be permanent.  But that is beside the point.

Not to diminish the psychological impact of losing your hair due to cancer treatments, and though so may argue that it is easier for a male to lose his hair, I completely disagree.  I believe it is equally just as difficult.

But let us look at this concept.  You are going to die from cancer without treatment.  But the treatment you are going to give you has the potential to cause your hair to fall out.  In fact, it is really likely.  Oh, and there is a chance that it might be permanent.  Here is your choice, go through treatment, or die.  But now, here is a new option, if you choose the treatment, lawyers will help you make money for the inconvenience of the hair loss.

But that will be good for you.  But, damn, one would think, that the extra expense incurred by the company making the drug to pay for the lawsuits, would cause the drug price to go higher, and perhaps even make it unaffordable for many, resulting in those patients losing their lives instead of their hair.

Seriously, why do we have lawyers willing to help a patient deal with hair loss due to chemotherapy toxicity, but when it comes to more serious conditions, such as congestive heart failure, restrictive lung disease, secondary cancers, all caused by the original treatments, there are no lawyers to deal with these unfortunate patients?  People actually die from these side effects.  Where are the lawsuits for the lives that are lost, not just the hair?

Because it is simple.  Until an actual cure is found, without causing side effects, this is the choice we have to make, to live or to die.  I was treated with 4 times the lifetime maximum exposure of ionized radiation and several chemotherapeutic drugs known to kill people or cause extreme health issues later in life.  In fact, that is exactly what happened to me.  Of course, if you look at the side effect warnings I got back in 1988, the doctors only missed it by nearly completely, telling me of a risk of secondary cancer and possibly an enlarged heart.  Today, 26 years later, I have cardiac, pulmonary, gastrointestinal, immunological, muscular, spinal, endocrine related issues all caused by my treatments.

Where is my lawsuit?  The answer?  There will not be one.  I chose to live.

Another Fallen Angel

Once again, a sad goodbye is said, to another survivor of Hodgkin’s Lymphoma, the same cancer I faced in 1988.  And like me, over the years, faced with dealing with late effects caused by the treatments that saved her life from cancer.

Like so many that I had come to know, I first “met” Davina on a Facebook page for Hodgkin’s survivors facing late effects.  This page is a critical tool for us survivors because where medicine fails us in surveillance and care, the members of this group provide information, experience, guidance, and support.  Myself, I had been on there for years already, as well as other internet support groups.

For the most part, Davina was able to manage her issues, mainly struggling with an undiagnosed shortness of breath.  Many times this issue can be traced to either cardiac or pulmonary causes.  But for Davina, there had been no answers.

A few years ago, I got to meet Davina in person with another fellow survivor.  We were attending an event for writers who contributed stories to a program called “Visible Ink”, written by patients and survivors, published by Memorial Sloan Kettering Cancer Center.  Davina was so impressed with the program, that she inquired about it.  I explained to her that there is a special “release” that comes from writing, a kind of therapy.  And for those of us that struggle with dealing with the physical issues we were dealing with, and the emotional, often times, simply venting through a story helped in ways professionals could not.

I recall one of the first stories Davina wrote, it was not even cancer related.  But it was about her life as a little girl dealing with teasing she received for a condition with her sight when she was younger.  It had scarred her so badly, that this still bothered her late in life.  In actuality, I almost felt like at times, this issue was worse than dealing with the cancer and its late effects, though clearly we knew it was not.

But she wrote several pieces after that.  And she thanked me for encouraging her to write.  Davina truly enjoyed it, though she was clearly her own worst critic.

Over the last year however, her health started getting worse.  The late developing side effects got more difficult to deal with.  But the whole while, Davina continued to offer support to everyone in our Hodgkin’s society.  And she not only offered support in relation to cancer or treatment side effects.  She also offered support for other issues that many of us were going through.  No matter how much she struggled, she was selfless in support of us all.  And I will never forget that about her.

She passed away this past weekend.  Another to survive cancer, only to succumb to the side effects caused by the treatment that saved her life.

I have experienced this many times over my survivorship.  Davina is now the second friend in the last few months to have left us this way.  As I tell others, no matter how often this happens, it never gets easier to deal with.

Davina, you will be missed.