Prelude to our Story

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Our story began in October, 2010. This is how it began…

My husband was diagnosed with stage 4, metastatic cancer and this is our story of the search for his care. Although twenty-three months before the writing of Philip’s story his physicians and three-second pinioned doctors gave him six-months to live if he opted out of treatment and twenty months if he opted in. Philip decided he wanted quality of life and chose not to undergo the assault on his body that the treatments were certain to do.

Philip is no stranger to coping with difficult situations and decisions. Thirty-three years ago on Halloween Eve 1977 a three-time DUI offender slammed into the rear of his car catapulting him over his driver’s seat paralyzing him in an instant. As life changing as his paraplegia was – this was different. His life lay in the balance.

Philip Rappa 2010

We held one another and although we were frightened. Actually, that’s a misnomer: it was I alone who felt frightened. Philip was, and remained unfaltering. He took this diagnosis in his stalwart, unflinching stride. However, he also knew that together we were a powerhouse and if there was even a small chance of wellness that we’d find it.

As he lay in his hospital bed contemplating the future he was told he no longer had, an oncologist came into his room. As Philip retells the incident she had the smell of death upon her and as she neared him the odor was overwhelming.

Matter-of-factly she informed him that he was grossly anemic and even after the three blood transfusions he had just received he was in dire need of a very specialized medication. However, she also declared that it was $40,000 a shot and that Medicare, Philip’s sole insurance, would never cover it so he would have to go without. She presented no other possible solution. She simply departed his room as matter-of-factly as she entered it.

What this oncologist didn’t know, couldn’t have known, was that neither Philip nor I ever took “no” as a viable solution to anything. I began an active research for affordable options. As luck would have it I found a liquid, natural supplement, which Philip swallowed three times a day and weeks later, he was no longer anemic!

We saw three highly knowledgeable specialists who all proffered a soup-mix of toxic chemotherapy. The doctor’s informed Philip that he risked a heart attack, bowel eruption, and other horrors to caustic to reiterate. As my eyes welled with tears I knew that I could not ask my beautiful, loving husband to put his body through such agonizing tortures for the remote possibility of a few more months of life; hence, his decision not to move forward in that direction.

Startled that here we are in the year 2011 and we still have no “cure” for cancer. I remember, as a child over 50-years ago that cancer was the national scourge and that every possible research dollar was going to go into finding the “Cancer Cure”. As I opened the Pulitzer award-winning book, “Emperor of all Maladies: Cancer” I’m appalled at the statistic that one in two women would have cancer in their lifetime and one in three men! How is this still possible?

Sure we’ve made strides, but the costs have been astronomical. We have hundred-dollar anti-nausea pills and $10,000 a month drugs and according to USA Today, “the average cost of a 30-day prescription for cancer drugs is now nearly $1,600. Avastin, a newer drug used to treat colorectal cancer, sells for about $50,000 a year. That price could jump to $100,000 if Avastin is approved to treat breast and lung cancers, which require higher doses.

According to Dr. Leonard Saltz of Memorial Sloan-Kettering Cancer Center, there are two equally effective options to battle metastatic colon cancer, the kind spreading through the body — but one costs $60,000 more than the other.” There is no doubt about it: Cancer is big business. So, one might argue, is there just too much money being made treating sick people? Is there an incentive to really find a cure?

However, I was not about to give up without a valiant fight.

Philip and Norma in a healthier time

I researched study after study. I read their protocols, most of which eliminated Philip because his colon cancer had metastasized and had reached his lungs, his liver, his thyroid, his chest wall and more recently, his kidney. Apparently, once it reaches the liver there is less than little hope: even in these avant-garde, experimental studies.

With hope diminishing for the long-chance studies, I turned to the television commercial for Cancer Centers of America. After all they rave that they offer treatments unavailable elsewhere and that their specialists are even more special. So I called. Immediately their interest was tweaked and they wanted this new “test subject” immediately. But their interest was thwarted as quickly as it had been piqued. Philip’s Medicare insurance was the culprit. But they didn’t divulge it; instead they told me that they couldn’t get him a bed for 9 or more months.

I asked about their commercials touting urgent, immediate care, but they offered little explanation. I hung up deflated thinking, “if the doctor’s proclamations were correct he’d be dead before a bed became available.”

I stewed for few days and decided to call their 800 number again, only this time I would use a different name and I would tell them I had full coverage: Blue Cross and Blue Shield. Ecstatic would be the only accurate description for the voice on the other end of the telephone. “We have a bed for him tomorrow and we’ll have a limousine meet you at the airport to drive you directly to our amazing, facility”. As if that were not enough, the faceless voice said they would arrange a hotel room for me close by with to and fro transportation from the Cancer Center.

As I hung up the phone, I could feel my blood curdle. The audacity. The outright “business” of illness was so evident it turned my stomach. So, my husband would be denied whatever their specialized treatments might offer because he didn’t have insurance other than Medicare. Although I knew it before I called, having it affirmed in such a grotesque manner was infuriating.

So, here we are, my husband’s cancer growing and spreading with no medical alternatives on the horizon. If money were no object there are a multitude of “off-shore” gambles …and then again, there would also be the Cancer Center’s of America.

Comments (2)

  1. These entries are awesome Ms. Norma. Thank you for telling me about them. Ihave enjoyed your writings and look forward to more.

    Michael Silverstein
    Paramedic SJCFR
    Saw you tonite 11/10/2012

    • Michael, you are so very sweet – sweet for going and checking my blog, and even more so for the wonderful work you do. I am so very grateful that you “saw me tonight”. Please do stay in touch.

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