Sunday, March 8, 2015

Inequality of Disease

Who would ever think it makes sense to feel 'lucky' to have cancer.

And yet, as diseases go, what other disease do you know that has more fundraisers, more marketing, more research, more medical hours devoted to the treatment and cure. Not to mention the amount of wealth garnered from this disease. How many businesses are devoted to cancer? How many college courses or majors or specialties? Oncology just sparkles with $$$$$.

But that sounds crass when one receives the diagnosis and then all of that excess or should I say devotion to this disease becomes relevant and much appreciated. I am one of those who ignored the symptoms and am now facing the diagnosis and treatment for endometrial cancer. I mention this diagnosis and suddenly I'm surrounded by a sisterhood of cancer survivors and those who are battling the disease. Win or lose, the cancer conglomerate coffers seem to overflow.

Cancer was off of my radar. You see for the past ten years my focus was on another disease and the man I married 40-some years ago. He was diagnosed in 2005 with Amyotrophic Lateral Sclerosis (ALS) -- it even has a nickname 'Lou Gehrig's Disease.' The disease has been haunting his family for much longer. His family has lost more than a dozen aunts, uncles, cousins, sisters, brothers, mothers, fathers... My sons lost their father in November, 2014, and my sons have a 50-50 chance of inheriting this disease. The next generation -- will it be fodder for this disease? Our kids? Our grandkids? Our great grands?

The comparison between the care of ALS sufferers and cancer victims is like comparing back alleys to Wall Street. No treatment, no cure. The diagnosis for ALS is a death sentence. Doctors hesitate to give the diagnosis. And yet the longer they delay the more catch up or the more wasted life. For someone with ALS, the only treatment is to maintain quality of life in whatever ways possible. Where there are no medicines or ways to slow the progression of the disease, doctors, technicians, medical suppliers find durable goods to take the place of the wasted muscles, the dead neurons.

But often the disease races through the  body faster than insurance companies and medical suppliers and specialists and the VA or any other funding source can react. By the time the funds or the equipment is available to the ALS patient, the disease has surpassed it and once again the family must play catch up to meet the needs of daily living.

Anything from $10 spoons that grasp the hands that have lost their grip to $30,000 power chairs that are made to grow with needs -- elevating seats when the strength to stand weakens, braces and straps and padding to hold limbs and body in place when muscles are gone. Head rest that will keep the head from lolling or falling in such a way as to damage the neck. Neck support when it is too weak to hold the head's weight. Places included in the design on the chair to insert poles and racks to hold the breathing equipment when the disease weakens the intercostal muscles which include the diaphragm which controls breathing. Equipment that acts as his voice will hang on one of those racks with another electronic, battery powered machine that will suck mucous and saliva when he can no longer swallow.

The body continues to worsen and weaken, there is no stabilization. And when the power chair becomes necessary, one must transport it. A van becomes a necessity and no insurance company considers that a health expense. That's another $30,000 or more -- out of pocket, not to mention the additional $30,000 to trick out the van with lift and special adaptive equipment. And at night -- a hospital bed and a lift of some kind to move from bed to chair. Cha-ching. An overhead tract system is another $30,000 or a Hoyer lift that is much less expensive and more work for caregivers. One wife has the interesting dilemma of trying to maneuver her six foot-eight inch 300 pound husband while he dangles from a sling from a Hoyer lift. And if he falls -- how does she get him up. She like me, has realized how many burly firemen can fit in bedroom or bathroom.

Eventually a machine, if nothing else has caused death to this point, takes over the breathing and he is hooked up 24/7 to a machine connected to a hole in his throat. Something I hadn't thought about when considering a tracheotomy for my husband -- no air would pass through his mouth. Dry petri dish. And then the throat muscles lose the ability to swallow and a peg or feeding tube is inserted into the stomach and hanging outside of the body with a plug in it. Food becomes tasteless liquid protein-vitamin mixtures. The mouth has become obsolete, even speech has ended.

Thousands and thousands of dollars and not a single dollar has gone toward treatment or cure of the disease. ALS freely runs rampant through the body, killing at will. Killing muscles and cells and lives. It targets the most healthy all around the world. Men and women, every age. Even kids. Derrol's brother was ten when he was diagnosed -- misdiagnosed -- but it didn't matter, they just treat the symptoms until they morph into something worse. That was in the 1970s -- very little has changed in treatment since he died at age 18....

While I helped my husband maintain his profession, his dignity, his life, I put mine on hold. Nothing was more important than holding onto him --this man. I loved and respected and adored him for 40 plus years. We laughed, we cried, we joked, we quoted movies, we finished each other's sentences and we filled in the blanks in our memories and our thoughts. We were one and then the disease took him. We never got a chance to fight the disease -- really fight it. During the disease's rampage through my husband's body, we fought just about everyone else. Hospital and emergency protocols were killers for him. Most health personnel don't know the first thing about treating ALS unless the person is there to die -- they assume death is the outcome and set protocols to ease them into death. We fought 'assisted suicide by protocol' for twelve days during one hospital stay before we finally convinced the doctors that we meant to live.

But now that I have a cancer diagnosis, in less than a month I've had extensive surgery to remove the tumor and anything that even looks like reproductive organs, I've had several appointments with doctors, several lab tests, several prescriptions, and a schedule for chemo which will start in a few days. Although the only thing the doctor guarantees is that I will lose my hair, he seems quite sure with surgery, poisoning my entire system, and radiating me until I nearly glow, I will be cancer free. My insurance provider is almost giddy about covering this 'catastrophic' illness -- 'that's what they are there for.'

It is comforting to know I am so well cared for by such experts and their staffs and the entire cancer industry. And yet, it is bittersweet -- why couldn't some of this help been available to my husband. Why not at least one weapon, one tool, to fight ALS? Why must there be such an inequality in the disease fighting industry? Diabetes -- nothing has happened toward a cure in 30 or more years. We hear about new ways to 'manage' it, but no cure. NO CURE!

Cynics say there is no money in finding cures. Do we really live in a world where it is better to keep disease alive and growing so the economy stays strong. I pray that isn't true. And yet, in the first quarter of this year expenses to treat this cancer exceeded what we and insurance expended on ALS -- not because we couldn't or wouldn't -- but there were no treatments or cures to invest in. Bittersweet this diagnosis of mine. In three months I have received better care, more care, more options than my husband had in his entire life.

It doesn't seem fair....