Thoughts At Large

Passionate thoughts on random topics

Tag: cancer

Sharks and Cancer

quint

So, eleven hundred men went in the water, three hundred and sixteen men come out, the sharks took the rest…”  Quint, Jaws

It has been a very difficult year and a half. First, in November of 2014 my father died after a brief but excruciatingly painful fight with lung cancer which had spread to his bones. Almost one year later, last September, my wife died after a long fight with breast cancer which had spread to her lungs. And then only six months later, my dog died after a painful fight with a soft tissue cancer which had spread to his bones. One year, then only six months, part of me wonders what horror will befall us in three months. But I have to believe that the pain and suffering have ended now.  I can’t help but appropriate Quint’s quote to, “So, five of us went to Texas, three of us come home, cancer took the rest…”

Cancer has targeted my family for far too long now. I don’t want it to have any more power over us. My children have spent fully one-third of their lives living under the threat of cancer taking their mother and then their dog. Almost their entire teenage years, years difficult enough without cancer moving in to live with us, has been spent living under that dark cloud. They are 21 years old now and, in spite of these added pressures, will both graduate on-time from the University of Texas at Austin, each with over a 3.5 GPA. How they have been able to stay focused amazes me and is a testament to their strength of character.

I know people have had it harder than we have. I don’t claim to have a corner on suffering. And I am grateful for the seven years we were able to steal from cancer by moving to Texas and seeking treatment at the M.D. Anderson Cancer Center in Houston. I’ll never regret that decision. But if we could have a break from any additional pain for a short time, that would be great.

Each of us is dealing with these losses in our own individual manner. Certainly, grief counseling has helped, but we still face a world in which neither Lisa nor Delbow will walk with us any longer. We have had long discussions about faith, heaven, philosophy, and all of the accompanying topics. We disagree as much as we agree but the discussions are always lively and fascinating. I hope that we can each find some comfort in our positions.

Finally, there is the issue of moving forward. The house, already quiet from Lisa’s absence is now even quieter without Delbow’s rambling about. The kids are on spring break this week, so I have a respite before facing that still house alone. I now have six months of experience without Lisa and living alone. I hope this serves me well when the kids return to school. But before we know it, school will be over, graduations will have been concluded and we will be packing up for our trip back to Rhode Island. I hope it goes well and we can begin our new lives healthy. No sharks, no cancer.

Coming Around For Another Bite

Two Novembers ago it took my father. In September it took my wife. Now it wants my dog. I hate cancer. Why won’t it leave us alone? I am reminded of the quote from Christopher Hitchens who, when confronting his cancer diagnosis wrote, “To the dumb question “Why me?” the cosmos barely bothers to return the reply: why not?” So it is with my family. And so it goes.

Susan Sontag warns us of anthropomorphizing cancer, but it is so easy to do. Without a face, your foe it is that much harder to fight. What made Jaws so powerful was that the animatronic shark kept breaking forcing Steven Spielberg to come up with other ways to present the omnipresent danger through the use of camera movements and ominous music. The unseen monster is far worse than the seen. So we put a face on cancer and try to fight it from the outside while it destroys us from within.

So now we are awaiting the results of the biopsy which will tell us if the tumor is malignant. If it is, we will be faced with the difficult decision of what to do next. At twelve years of age, my wonderful dog has already battled cancer twice, had both back knees rebuilt, and had his eye repaired in Chicago. He’s been through it all. And yet his only concern in life is that he loves us. We will be faced with the difficult answer to the question: for whom are we going to submit him to more medical treatment? If it is for him, we will proceed, cost be damned. If it is for us, we will need to regroup and face the ultimate question of when is more surgery, radiation, and recovery too much for him leading to the inevitable decision whether to put him down. But I’m ahead of myself. We need the biopsy results first. We’ve been down this road before and will make the right decision when we have all of the facts and in spite of the perturbations it will cause.

We will be forced to answer the tough question: for whom are we going to submit him to more medical treatment? If it is for him, we will proceed, cost be damned. If it is for us, we will need to regroup and face the ultimate question of when is more surgery, radiation, and recovery too much for him leading to the inevitable decision whether to put him down. But I’m ahead of myself. We need the biopsy results first. We’ve been down this road before and will make the right decision when we have all of the facts and in spite of the perturbations it will cause.

I hate cancer. Leave us alone. Even sharks need time to digest their latest meal.

Anger and Pain

When I held Lisa, I knew that two inches below my embrace, inside her lung, was a demon bent on her destruction. And now she’s gone. The demon won. Now all I have are pictures that can’t kiss back, photos of her long blond hair I cannot tussle; the dimples in her cheeks are now flat, photo paper and ink. I know this is the nature of all living things: we live, we die; but being three weeks out from that painful night, the shock is still palpable. God, I miss her.

I am still lost; second-guessing my every decision. “Zerrissenheit” still reigns. I have grown to hate nights and weekends. The structure of work provides comfort. But each night and weekend feels like the four walls of the house are closing in on me, and I can’t stand the silence. The television is always on or, and if not, music is filling the void once filled with her laugh. When will I be granted a good night’s sleep? 2:00 a.m. seems to have some subconscious awakening charm on my slumber. After that, the thoughts of the empty place in the bed next to me overwhelm me in the silence and the dark, and sleep eludes me.

Someone told me that I will come to appreciate all of the time we had together and no longer begrudge the time cancer stole. Speaking from experience, I trust this individual, but I’m not sure it won’t come down to my personality and not time to transform this anger. Is it the well-adjusted individual who ultimately finds peace? If so, my keel is not keeping the ship upright. And I do not think I have the personality (or capability for forgiveness) to right the ship.

Elizabeth I, to the Countess of Nottingham said, “God may forgive you, but I never can.” At this point, I cannot forgive God. Of course, we can hide behind the old analogy that we (humans) are not wise enough to see God’s grand blueprint, but right now I cannot help but to think that either there is no God (which is less painful) or there is one, but who is either capricious or lacks the omniscience attributed by humans. If I am wrong, then I will follow Maurice Maeterlinck’s advice when he said, “It is always a mistake not to close one’s eyes, whether to forgive or to look better into oneself.” I will forgive God as I look into myself. But right now the only thing inside me is anger and pain.

Zerrissenheit

Shattered FutureGive sorrow words; the grief that does not speak                                                         Whispers the o’er-fraught heart and bids it break.                                                                              Shakespeare, Macbeth, IV, iii, 209

A very dear friend of mine gave me Anne Morrow Lindbergh’s book Gift from the Sea following my wife’s September 2nd death. It was a wonderful little book and contained a German word that accurately describes my emotional state: “zerrissenheit.” It is described as “torn-to-pieces-hood.”

The thing I am learning about grief is that it does not follow a linear path. One does not travel from one emotion to the next, leaving the first entirely contained in the rearview mirror. Rather, from minute to minute, I can wander from disbelief to acceptance to anger to sadness back to disbelief. This emotional whiplash takes a physical as well as an emotional toll. While I am back at work, my mind is not. This mental “zerrissenheit” manifests itself in a lack of confidence, second-guessing, a lack of focus, and sudden confusion. I was so much more confident when Lisa was here. I check my pockets a dozen times before leaving the house to make sure I have everything I need: keys, wallet, phone, etc.. In a word, I am lost.

And it isn’t that I don’t smile or laugh. I do. But so often I find myself reaching for my phone to text or call Lisa to tell her the joke only to realize that the call will never be completed again. I am having a hard time with the concepts of “never” and “forever.” I know that someday I will be glad for the time we had, but right now I am angry over the time that has been stolen (not to mention the time wasted fighting cancer when we should have been living our lives together). “Never” and “forever” are as daunting to me as the size of the universe is to a child.

It has been two weeks now, and the house is silent. I don’t know what the future holds anymore. We are taught to plan, to prepare as we enter adulthood. I did. This is not what I planned for; this is not the future I wanted. I am alone. My best friend was stolen from me. And while she would tell me to snap out of it and start living my life, this grief-triggered “zerrissenheit” is involuntary. I miss her so much.

No Autopilot When Spiraling In

spiral

As we continue our corkscrew toward the ground, we took another turn today. My wife can no longer easily swallow, causing her to cough when taking medications. Because she is so short of breath, she cannot cough up that which she has aspirated and she begins wheezing which results in her vomiting. Because she is not eating, the only thing she vomits is green bile from her stomach. It is a vicious circle as we spiral in.

The kids are convinced now that something will happen the day I drive them back to college. Given how we have tightened the spiral, I’m not sure I disagree.

Looking outward from inside this corkscrew is disorienting. As soon as I am convinced that something has settled, the wings tilt inward still further and we spin that much faster toward the ground. But one can find focus in this spin. When I least expect it and am most ill prepared, the gravity and magnitude of the situation (essentially the finality of it all) clubs me with a mighty blow after which I find myself gasping for breath, crying and floating directionless in the air until the reality of current circumstances force me to see the spinning and rapidly approaching ground through the windscreen.

There is no peace when spiraling in. Life’s obligations and daily tasks still require our attention: the dog needs to be fed and given his meds, the laundry never stops, groceries still need to shopped for, bills still need to be paid, work still needs to be done. However, there is a certain feeling of mechanization about it all. We go through the motions of shopping, eating, dressing, sleeping, as we have all summer, but there is no soul in it. Put your seats in the upright and locked position, return your tray table to its stowed position, tighten your seatbelt tight and low around your waist. The captain has exited the aircraft and will not be returning. Cancer is now piloting the aircraft. Thank you for flying the terminally ill skies.

The insanity of the situation is that all but one of us will survive the inevitable crash. We will survive but in what condition? And as hard as this flight has been, I cannot imagine how we will carry on after we bore into the ground. And it is approaching ever faster and filling my field of view. Unfortunately (or fortunately), I cannot see it clearly, because of the blinding rage and constant tears.

A Vierordt Summer

7617471_sIn 1868, German physician Karl von Vierordt published a book on his experiments into the psychology of time perception. In it included what became known as Vierordt’s Law “a robust phenomenon in time estimation research that has been observed with different time estimation methods.” Essentially, it states that “short” amounts of time tend to be overestimated and “long” amounts of time tend to be underestimated. This has been the basis of our summer. The clock has barely moved while the calendar has flown.

The kids are heading back to college in 20 days. These interminable hours belie the fact that they have been home since mid-May and have known the awful fact that Lisa will no longer be fighting this awful disease. They are terrified to leave her knowing it may be the last time they ever see her. I tell them they must go, they cannot forestall their own futures, they must continue on their own paths. It is the truth. I also know that the routine of school, with friends around them, and classes to occupy their time will distract them from the cruelty the universe is throwing at them 150 miles away.

Sitting here day after day at my desk watching my wife slowly wither away in bed; watching my son and daughter sit with their mother doing the same as me is heartbreaking. No amount of preparation can prepare you for the monotony and sheer terror of watching someone, anyone, much less someone you love, slowly suffocate to death. Cancer is a suicidal disease bent on killing its host at the cost of its own existence. Watching it happen with no more arrows in the quiver is akin to watching Captain Smith walk into the wheelhouse of the Titanic, lock the doors and wait for the ship to sink. With no more options, one seeks the course of action with the most dignity. Don’t get me started on whether there should be better options for better dignity.

Sleep used to be easy. I could roll over, shut off the world and be out in a minute, and wake up in the morning (if not refreshed) ready to go. Now sleep is like a cruel joke. I am exhausted from running all of the errands of the day, worrying about Lisa and the kids and watching a clock that does not move but terrified of a calendar that will not stop because I know that each day that passes brings me closer to a day I know is coming and one I dare not consider. Lisa does not sleep well now. She wakes me because she cannot breathe well. I give her meds and turn up the oxygen concentrator. I rub her back, hoping she will calm down, that her heart rate will return to “normal” and her body will be lulled into a false belief that it is generating enough oxygen to fuel the system. If I’m successful I’m awake. My mind goes to dark places so I read. It usually takes a good hour to flush the dark thoughts in order for me to attempt sleep again. Sometimes this happens two or three times a night. The clock stands still. The calendar whirls.

Vierordt had no idea how easy his experimentation could have been had he simply gone to any intensive care unit at any hospital and found the waiting room and talked to the family members and friends of the terminally I’ll patients. They would have told him how long minutes last and how quickly weeks fly.

Stupidity Fatigue

Head in HandsThere is a saying in the lottery industry when the public will not purchase tickets for a seemingly high jackpot called “jackpot fatigue.” It is caused by the ever increasing and ever publicized jackpots always available to the public. The public has seen it all before and heard it all before and nothing new can be said about the jackpot total to get them to the convenience store to purchase a ticket. It’s all been done before.

I find myself suffering a similar kind of fate lately regarding the public at large. Events that used to anger me now no longer pique my interest or at least no longer send me to my computer and my Twitter feed where I would once fire off a pithy comment. Twitter especially has become the bastion of trolls ready to engage in bumper sticker based retorts and troglodyte tantrums rather than the necessary thought out debates. It is the AM radio of the internet.

I feel guilty for abandoning those things about which I am still passionately concerned: gun violence prevention, women’s rights, protecting my children from all manner of political stupidity, animal welfare, etc., etc, but I know that there are still those out there whom I trust to carry the ball downfield while I suffer this miasmatic ennui. I still read and I still write, just not at the same temperature as before.

Right now there are about 300 GOP candidates running for president, so there is still time for me to come out of this spin and focus the laser. Right now the moms and dads of Moms Demand Action for Gun Sense in America are meeting in Minneapolis to discuss next steps. In another universe, a universe where I wasn’t working with hospice to care for my dying wife, I would have joined them to learn what I could do to better fight gun violence in blood soaked America. But that is not the universe in which I currently reside. I do not make excuses, but only present facts. I am tired, physically and mentally.

I am tired of the stupidity of the southern white male with his pickup truck emblazoned with hunting decals and NRA stickers, tired of the stupidity of religious hypocrites festooned with Christian stickers on their cars and quick to criticize anyone not their mirror image. I am tired of the stupidity of the 300 GOP candidates running for president who are fighting for air time by reaching for the lowest common denominator in their demographic and ultimately the shallowest of the public gene pool. I am tired of cancer and the stupidity of its suicidal march toward the murder of its host. I am tired of the stupidity. I am suffering from stupidity fatigue.

The Rose

DSC_0062_-_CopyOscar Wilde wrote, “A flower blossoms for its own joy,” and while he is one of my favorite authors, I disagree with this quote. Flowers can neither enjoy their own fragrance nor know their own beauty or the joy they bring to others.

As one last outing, Lisa wanted to go to the nursery to see the roses on Sunday. She had not been out of bed in almost two months, so the procedure we went through to get her there, with the wheelchair and oxygen tank stuffed into the car on a 90+ degree Texas summer day was daunting for me and the kids, it was punishing for Lisa. We had traveled no more than half a mile before she vomited all of the pain medication pills I had given her not ten minutes before. And yet she would not allow me to turn around. We were going to see the roses.

Of course, anyone who knows Lisa knows how much she loves her garden and her flowers, especially her roses. She researched and selected each one, labeled them with brass tags and spent countless hours pruning and tending to them. Like the rose in Antoine de Saint- Exupéry’s The Little Prince, she loved each of them because of their pure beauty and the work she had put in each of them.

As I pushed her wheelchair through the rough, rocky terrain (and pulled the oxygen tank behind me) she stopped me to read about the varieties of roses and admired their beauty (as if she was looking to fill a hole in the garden). It was then that it dawned on me that she is just like a rose. There is no better description or personification in nature than the rose. She is a rose.

She is brutally honest and unflaggingly faithful. She reminds me of the quote from Alphonse Karr, who wrote, “Some people grumble that roses have thorns; I am grateful that thorns have roses,” and the quote from Anne Brontë, who wrote, “He who dares not grasp the thorn should never crave the rose.” Having her in my life has brought me thorns and flowers, but I would never have traded the former for the latter because one without the other would destroy the rose that she is.

Even now, after being brutalized by cancer and chemo, she can be seen in the poem of Robert Frost

“The rain to the wind said,

‘You push and I’ll pelt.’

They so smote the garden bed.

That the flowers actually knelt,

And lay lodged — though not dead.

I know how the flowers felt.”

And yet, while the rose is fading, she does not know her own beauty or the joy she brings to others, she is loved. She is a rose. She is my rose.

Cancer, be not proud

Cancer

I can neither understand, nor accept that it is divine will that a disease was designed to kill its host and itself in the process, other than to surmise that if it is God’s will, he/she/it is neither the omnipotent nor benevolent being we were taught to love/fear in organized religion. And, further, that the process under which the individual must ultimately perish (and their family/friends give comfort and assistance) is neither compassionate nor illuminating. However, if you believe in a paradisiacal hereafter, I offer this twist on John Donne’s Holy Sonnet 10 where I substitute “cancer” for “death” and piss on its grave.

Cancer, be not proud, though some have called you

Mighty and dreadful, for you are not so;

For those whom you think you can overthrow

Die not, poor Cancer, nor yet can you kill me, too.

I cannot understand your suicidal need,

To grow without boundaries and murder your host

When to do so causes your own harm the most

Like a terminal drought caused by a nefarious weed.

You are a slave to enzymes, proteins, and desperate DNA,

And must with poison, war, and evil dwell,

And a warm embrace or gentle music can make us sleep as well

And better than your sting; why do you brag then?

One short sleep past, we wake eternally,

And cancer shall be no more; Cancer, you shall die.

In short, Fuck You, Cancer.

I Hate Cancer

inhofe snowI am so sick of cancer. I have seen it eat away, like rust or termites, healthy individual’s lives, and the lives and futures of their families and friends. Whether it happens slowly over a long period of years or quickly over a few months; whether it is painful or pain-free, the wasting, the consumption, the evaporation of dreams and promises to one another, the snatching away of future weddings, graduations, births, celebrations of all kinds, extinguished like so many candles, this insidious disease remains unchecked despite science’s best efforts.

At a time when politicians throw snowballs on the floor of the United States Senate to convince us that global warming is a hoax (while prohibiting experts from testifying!), when those who deny evolution control the purse strings of the country’s science foundations, millions of people continue to suffer because we continue to lump 300 unique diseases into a single category and call them all “cancer.”

There will always be competing interests, but perhaps it would be best for our infrastructure priorities to be funded based on input from the nation’s most respected civil engineers and our most pressing medical priorities to be funded by input from our nation’s most respected physicians. Senator Inhofe holding a snowball in February proves nothing more than it is February, and in February one is likely to find snow in D.C.. Who would he have on the Appropriations Committee on cancer funding, Dr. Seuss?