Paul's Heart

Remembering Anita

The above image is from a fellow long term survivor of Hodkin’s Lymphoma’s FB page.  Anita was the moderator of a Facebook page for long term survivor’s like me, which helped to provide support and information, in a world, no matter how many doctors exist, long term survivors of many cancers remain unable to find the help that they need.

This morning, I learned of Anita’s unexpected passing.  Perhaps unexpected is really an inappropriate word.  When someone unexpectedly dies, it is because a person is otherwise considered healthy.  And when someone who is considered healthy goes to the hospital, they are handled as such.  But cancer survivors, and I will speak only specifically about Hodkin’s Lymphoma survivors because that is the cancer I battled over 25 years ago, are not healthy.  In fact, unless you have been treated for Hodgkin’s in the new millennium, or at the least, after 1990, there is a good chance that you were treated with such harsh and toxic drugs, and exposure to radiation four times the lifetime maximum a human being is supposed to ever see.  And as statistics often point out, the benchmark of survival is five years.  We all look to reach that goal.

It is what happens after that five years, that becomes the problem.  Medicine never really studied the late effects on the body of cancer survivors because simply put, we were not expected to live long enough to develop them.  BUT WE DO LIVE LONG ENOUGH TO DEVELOP THEM!

Which is why, what Anita has done for literally nearly 300 other Hodgkin’s long term survivors, has made a difference in each of our lives.  Anita is not the first person to take on such a supportive venture, as it was to her benefit as well.  I first learned about long term survivorship from a woman named Linda Zame who co-founded a support group for long term survivors on the American Cancer On-line Resources site… acor.org .  She invited me to that online support group in 1997, and though I was having no issues yet, it was because of what I learned from her, and the nearly 500 others in that group, what I would eventually be dealing with in my survivorship, and how critical it would be for me to be my own advocate for my health care.  Sadly, she also passed away following complications from a medical procedure.

The thing is, I knew Anita, fairly casually, only through private message exchanges in regard to operations or situations on the Facebook page.  But that does not make her death any less painful for me.  Since 1997, I have said goodbye to so many other long term survivors, who did not die from their cancer, but from complications of their survivorship.  Because of each and every one of them, any medical professional that has me as a patient, gets an education from me in cancer survivor care whether they want it or not.  I learned from others the precautions that need to be taken with all of my issues (cardiac, pulmonary, spinal, muscular, GI, immunological, and psychological) and for that I am eternally grateful to people like Anita and Linda.

It had originally been suspected that Anita was dealing with pneumonia.  And with the average healthy person, her symptoms may have resulted in that diagnosis.  Unfortunately, discovered too late, it was congestive heart failure, a common fate for those who have survived so long, and for too many, undiagnosed with this condition because medical knowledge is not available or taught to every doctor to look for.

Yes, I am going to have my typical day remembering another survivor who has passed, difficult.  I will do my best to be inspired by all the good that she has done for survivors all over, so that I do not overwhelm myself with the thoughts of similar issues that I, and other survivors deal with on a daily basis.

Anita, I know you are in a special place right now.  But I want you to know, I appreciate everything you did for me in the brief time we knew each other.  Your support and encouragement will be missed.

Health Care’s Worst Offense

I want to state a couple of things before I get to my post.  I 100% support my primary care doctor, and all of the specialists taking care of all of the late side effects I deal with, from my battle with cancer.  When I reach out to them, they not only hear me, they listen to me, and they take care of me, promptly, and most importantly, correctly.  And there is one reason that my care works.  Because I do not waste their times with issues that are clearly not a medical emergency, AND, when I have a situation, I explain the issues without drama, just facts.  When they are contacted by me, or about me, they know something is definitely wrong.

Next, the nurses that I interact with, are also top notch.  They are the initial contact that I have with my doctors, and are able to determine what needs immediate intervention, and what can be delayed upon first availability of the doctors.  And many times, situations can be dealt simply with just the patient/nurse communication.

Finally, for the most part, the emergency personnel that I have dealt with in hospitals, have done well by me.  I carry enough identification on me, to alert anyone who has to deal with my issues, that I am not an “average” person, but rather there are a lot of unique circumstances about me, that have to be recognized before the first procedure is performed on me.  You will not often hear about the good things that emergency personnel do for patients, often times just the bad.

Emergency personnel have so many personal concerns to deal with about their jobs, long hours, health hazards (especially contagious issues), and even unpredictable behavior of patients.  And to make matters worse, the majority of hospitals and clinics are just simply understaffed and overworked.

But there is absolutely no excuse for me to have read a Facebook post that I read this morning.  A fellow long term survivor posted that she went to the emergency room early Wednesday morning with a high fever and shortness of breath (SOB).  This kind of post gives me flashbacks to the times that I had to deal with septic pneumonia.  In any case, her struggles got only more bizarre, as “specialists” argued about who can do what as far as diagnostics, and then arguing who would be in charge.  The post was more complicated, but just imagine if you will, I imagine it to make less sense that following Dr. Howard, Dr. Fine, and Dr. Howard.  With her past treatment history, an urgency needs to be stressed because of the possibility of congestive heart failure (CHF).  A symptom of “wheezing” seems to restrict the care to being directed to a pulmonologist, but as many of us with long term issues know, CHF can produce the wheezing and shortness of breath.  Bottom line, for those of us who have had issues related to our past cancer history, we know how to argue for our care.  And this is the frustrating part, getting medical personnel to listen to us.  If the personnel have not been taught about us, they need to learn.  And if they are not getting any kind of training post residency, they have no choice but to listen to us, but in many cases they will not.

My last trip to an ER, got the following response.  My wrist pointed to my wallet, which had all of my issues documented, most importantly, the phone number to my doctors at Memorial Sloan Kettering.  I urged the triage nurse to contact MSKCC, and within 10 minutes, my health history as a long term survivor was faxed to the emergency room doctor, and I was treated appropriately.

Three days have gone by now, and the earliest it looks like the writer of the post will see any kind of relief, as far as either talking to a specialist, or testing for CHF may not occur for another three days as it is argued who will take charge.  And the frustration is understandable, as the patient goes to the RN to argue for her care.  But the shocking thing is the response by the nurse, as if the nurse was being bothered by the woman fearing for her life.  Like I said, I know hospitals are understaffed, especially when the majority of the care is left up to the nurses to provide.  And no one appreciates that more than someone who has had his share of hospital stays in recent years.  But there is no excuse whatsoever, to not have empathy for a patient who is scared, literally afraid of dying.

I have known my share of long term survivors who have suddenly lost their lives, with unsuspecting causes, only to be revealed that a raging infection had taken place, unbeknownst to the medical staff.  I know too many long term survivors who have had “routine” procedures done (that a normally healthy person could go through), only to suddenly die from unexpected complications.  But the fact is, cancer survivors who have been exposed to the extreme toxicities of chemotherapy and radiation, we know when our bodies do not feel right.  We know when something is going wrong.  And we will do our best to help any medical person to diagnose us, and save us.

But you have to start listening to us.