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Reacting to cancer

When people receive a cancer diagnosis, they react in a number of different ways. Some panic or become angry; others get depressed. Online cancer forums contain many threads such as “I Can’t Stop Crying” and “Feeling So Depressed.” When I read these headings I momentarily wonder whether I’m in complete denial about my own cancer. Should I be more like them? Should I be miserable instead of enjoying each day?

But each cancer patient negotiates the terrain in his or her own way. Some are plunged into it kicking and screaming; others remain focused and calm. I am in the latter camp; I’m even relatively cheerful. This is because of what I’ve learned from friends who had cancer.

My two best friends from college both died of lung cancer. One of them shut herself off from others after her diagnosis, refusing to answer messages from loving friends who wanted to help. The other friend reached out to everyone she knew, seeking affection and support. The one who shut herself off died very quickly; but the one who reached out to others won a remission of more than a year despite the odds being 99% against her. Watching the way they lived and died was a powerful lesson to me, as was the courageous death of S.G., who when told that he had pancreatic cancer refused to undergo treatment. He told everyone “I’m 70, and I’ve had a good life. I’m ready to go.” He planned his own Celebration of Life while still alive, inviting fellow musicians and poets to share the stage with him, and afterwards he spent his remaining months taking a first-time-ever trip to Paris with his daughter, listening to jazz, teaching himself calculus, playing the flute and reading Buddhist sutras.

I learned a lot from these three friends who died. We all have the power to choose how we respond to the news that we are going to die. I approach the problem from a practical viewpoint: what response will do me the least harm and the most good? If I wallow in fear, rage or depression, that would be an obvious harm, not just to me but to all my family and friends. But if I maintain good spirits and courage, that boosts me upward, along with everyone else. The choice therefore becomes a simple one.

If we’re open to the idea, cancer can teach us valuable lessons. Because I know that my time on earth is finite, I now enjoy every day much more than I did a year ago—and believe me, my quality of life was pretty darned good twelve months ago. In some strange way my overall happiness factor has actually increased due to (or despite) the cancer. I don’t waste time playing computer solitaire the way I used to; I’m now focused on making the most of my remaining hours, and I’m happier as a result.

But the most important thing that cancer has taught me is that I’m an incredibly lucky human being. People might say, “How on earth can you think you’re lucky when you have cancer?!?” But it’s true nonetheless. To my mind it’s not so bad to bow out at a high point. If this cancer had happened to me years ago, I might be posting forum threads like “I Can’t Stop Crying” or “Feeling So Depressed.” But the past eleven years have been the happiest of my life. I still hold the best job I’ve ever had (homes journalist and photographer). I achieved my childhood dream of becoming a writer and an author! I’ve surmounted the inadequacies and fears that I suffered while young, and learned to enjoy life instead of wallowing around in self-doubt. I have a loving and supportive family and dear friends who mean the world to me. I have the best spouse and son that a person could hope for. I have absolutely nothing to complain about, for I’ve been exceptionally fortunate in my life.

As I told Dann Denny when he interviewed me for a feature in the Herald-Times, “Life has been a wonderful party, but even the best party must come to an end. It’s my intention to depart the party graciously when my time comes, with heartfelt thanks for being allowed to participate.”

What every woman needs to know

Ladies, women, sisters: here’s what you need to know about ovarian cancer. It is more lethal than any other cancer of the reproductive system. Ovarian cancer is rarely noticed until it’s quite far advanced, because its symptoms are precisely the kind that most women don’t particularly want to bother their doctor about. These symptoms include weight gain / figure changes, bloating, digestive upsets, and feeling full very soon when eating. Many women feel guilty about weight gain and don’t regard it as a medical issue, and digestive upsets also fall into that category: “Oh, I must be eating too much of the wrong kind of food, it’s my fault. I’ll just tweak my diet a little bit.” But this attitude can KILL YOU.

Run, don’t walk, to your doctor if you have these symptoms. My weight slowly increased by fifteen pounds over the last two years despite the fact that I averaged only 1500-1700 calories a day. I figured it was simply menopause altering my figure. I never seriously considered going to the doctor even after the bloating started, because I attributed the new symptom to a dose of heavy-duty antibiotics that I had just taken. I was eating less and less because I felt so full, but the weight still kept creeping up and my belly began to be visibly distended. At that point I went to my OB/GYN, who palpated my belly and felt nothing. A week later I was much worse. My personal doctor, an internist named Dr. Charles Rose, was the one who spotted a problem. He ordered a detailed ultrasound of my abdomen which showed a large mass about six-and-a-half inches long. By that time I could eat only a single hard-boiled egg each day because I felt so extremely distended, the same sensation you have after finishing a huge Thanksgiving feast. Who wants to eat anything when you feel this full?

The bloating was caused neither by intestinal gas or by blockage. It was a buildup of ascites fluid, which indicates either imminent organ shutdown or malignancy. A week or so later I was in surgery during which the surgeons removed two liters of ascites fluid, two ovarian tumors and my diseased omentum. I’m now undergoing chemotherapy to attack the myriad microscopic cancer cells that remained after surgery, which were too small to see (a characteristic of my rare MMT cancer is the presence of “granular” cancer cells).

I’m not complaining, and in fact I’m in excellent spirits while I enjoy my second chance at life. My belief is that maintaining good spirits for as long as possible will undoubtedly enhance my own daily life as well as that of my husband, son and friends. I don’t want to let myself get depressed or angry or fearful, which would have a negative ripple-effect among those who I care for. I’m extremely grateful to be alive, and I thank Dr. Stehman and his excellent team up at IUPUI’s Simon Cancer Center.

But what do I do with the brief time I’ve been given? Statistically, the chemotherapy is likely to give me one to three more years of life before the MMT cancer recurs, and it’s bound to recur because it’s so aggressive. I believe that I should use some of the time I’ve been given to educate other women about the dangers of NOT going to one’s doctor when a weight-and-digestion issue appears. By the time those symptoms show up together, you’re already in late-stage cancer, with a less than one-in-three chance of living another five years. Time is of the essence, so don’t wait.

So I repeat: Ladies, women, sisters, Run, don’t walk, to your doctor ASAP if you experience weight gain and/or figure problems, a diminished ability to eat, digestive upsets and bloating. If one hundred women read this blog, I might have just now helped approximately three of them escape an early death. Think about it, and tell your women friends.

 

Links that might be useful:

http://www.cancer.gov/cancertopics/types/ovarian

http://www.mayoclinic.org/diseases-conditions/ovarian-cancer/basics/definition/con-20028096

http://www.ovariancancer.org/

http://www.inspire.com/groups/ovarian-cancer-national-alliance/

 

 

War as a metaphor for cancer

Although I have cancer, I would like others to know that I am in no way fighting a battle or waging a war against it. Cancer-as-war is a metaphor that doesn’t work for me.

I was a child when the United States waged an unwinnable war in Vietnam. As an adult I turned on the television and watched unwinnable wars in Afghanistan and Iraq. During my lifetime my government has waged other unwinnable wars against drugs, against terror, against poverty and against crime. The word “war” to me has come to mean a struggle that cannot be won, and which at best can only be prolonged indefinitely, at horrible human cost.

That’s why I don’t want to wage war against my cancer. To do so would be to doom myself to failure. After all, I have seen countless obituaries in which the deceased person was described as passing away “after waging a brave war against cancer,” or having died “after struggling gamely against cancer,” or having “lost his or her long fight against cancer.” If I adopt the metaphor of a fight, battle, struggle or war, my ingrained automatic mental associations immediately give me the response of “unwinnable.” I need a different way of looking at my illness.

My inclination is to shun the whole concept of looking for a metaphor, and simply state the truth. I prefer to state the matter very plainly and simply: I currently have a disease, and my doctor is treating it. My treatment might turn out to be effective; it might not. But I will not let the ordinary verbal habits of my culture drag me into an unwinnable battle or a futile struggle. In my present condition, I prefer to be a pacifist and to embrace health rather than pick up a mental weapon to wage war against my disease.

Hair today, gone tomorrow

2013. My former chestnut hair was streaked with gray but still thick and waving.

2013. My former chestnut hair was streaked with gray but still thick and waving.

When a person goes through chemotherapy, part of the package deal includes hair loss.

At first this fact deeply disturbed me. I’ve had thick, wavy and tempestuous hair all my life, and I’ve always had a special relationship with it. It always refused to take a curl other than its own wave; it generally pulled loose whenver I pinned it up; and individual fallen hairs have accumulated in the corners of my bathroom floor from time immemorial. And yet I loved my hair, loved it so much that I preferred having it long than having it short. Loved it so much that I could hardly bear at first to think of going bald. The aesthetics of bald craniums are entirely lost on me, since I associate thick hair with vitality, health and sexiness. Bruce Willis and other bald actors can buff their shining domes all they like, but I have never found the look to be particularly attractive.

By the end of the day on which this photo was taken, almost twice as much was falling out at each gentle tug. It was as though a switch had been turned on which made the hair fall out.

By the end of the day on which this photo was taken, almost twice as much was falling out at each gentle tug. It was as though a switch had been turned on which made the hair fall out.

But several weeks into my treatment, my thinking has come around. I’ve accepted the inevitability of the fact of my own looming baldness, and my lower lip no longer begins to tremble at the idea. And it’s just in time, too, because today (15 days after my first chemo) my hair has begun falling out almost literally by the handful. There’s definitely a wistful sensation deep in my heart as I pull out a new clump and toss it into the chilly spring air to float away on the breeze; but I know that baldness will come and meet me before the end of the week is here. And that knowledge is actually far easier to handle than I thought it would be back at the beginning.

My feeling now is one of resolution: I rocked the shaggy thick hair look for more than five decades. Now it’s time to rock that bald head! – And don’t think I can’t do it.

 

 

 

A blow from left field

Less than three weeks ago, to my immense surprise, I became a woman with cancer. I had always thought that my fatal weakness would turn out to be some form of autoimmune disease, and this belief was reinforced two years ago when I had the DNA decoding company 23andMe assess my genome to determine my health risks. Because six out of my nine top genome-linked tendencies were autoimmune in nature, I never dreamed that cancer would snag me instead. But perhaps it will be shown one day that autoimmune tendencies support certain cancers, in which case 23andMe won’t have been so far from the target.

My cancer is MMT, Mixed Mullerian Tumor, which attacks the female reproductive organs. I’d already had a hysterectomy so the disease went for my ovaries. Fifteen days ago I had major abdominal surgery to remove large cancers from both ovaries. The smaller one was the size of a lemon; the bigger one was at least twice that size. Countless small “granular” cancers remain inside my abdomen and will need to be targeted with chemotherapy.

Because I’m a journalist by profession, I see no reason to censor the flow of information. To link shame to a diagnosis of cancer  seems to me to be a vestige of the 1940s and ’50s, when doctors often didn’t tell their patients that they had cancer at all, and spoke of it to their relatives only in hushed voices, behind closed doors. I’m all for openness and truth, not shame and obfuscation, which is why I’m writing this essay. Those who don’t feel the same should stop reading right now.

Cancer has lessons to teach us, if we’re open to the experience and don’t flinch. Lung cancer claimed the lives of my two dearest women friends from college days, and watching their sorrowful deaths taught me a powerful lesson. It’s not just how we live that affects people around us for better or for worse, it’s also how we die. One of these two women collapsed into fear and anger at her diagnosis and shut herself off from all her friends and acquaintances, refusing to answer phone or email messages, and refusing to let people come over and hold her hand and tell her how much they loved her. The other woman reached out to all her friends and asked for their emotional support, and basked in their love until she succeeded in wresting a year-and-a-half remission from her 99% deadly form of cancer. What I learned from the deaths of these two women was that the support of friends is heartwarming and immensely valuable, and that fear/anger rubs off on the survivors who are left behind.

So I have resolved to tell everyone the facts about my disease, and to be as courageous and brave as I can manage. The mortality rate for MMT cancer is not at all good, but those mortality rates are based on the average American who struggles with that disease. And I’m not an average American by any means. Average Americans too often eat junk food, drink to excess, have messy personal lives, and are overweight. I eat organically, I have always taken care of my body, I am  surrounded by a loving and close-knit family, I’m happy and optimistic by nature, and to my astonishment (with heartfelt thanks) I have discovered that scores of people value me and are rooting for me to defeat this disease. And all these factors can be extremely powerful when it comes to influencing the mortality rates. I’ve been an outlier all my life; so I think it entirely possible that I can prove to be an outlier when it comes to cancer as well. Time will tell, but I see many reasons to hold onto my optimism right now.

Tomorrow I get a baseline CT scan and my chemo port. Wish me well!

 

The old Presbyterian farmhouses of Bloomington

Four farmhouses built by prominent Presbyterian Covenanters still stand in Bloomington, surrounded by neighborhoods that were carved out of their former farm fields. The Covenanters had met with religious intolerance and bloodshed in their native Scotland. Bud Faris (now deceased) once told me that one of his ancestors had been burned at the stake for his beliefs. The Covenanters emigrated to the United States in the 1700s, where some of them settled in South Carolina. They were committed abolitionists who were completely opposed to slavery. Unwilling to live any longer in a slave state, a group of those Carolina Covenanters then came to Bloomington, where they thrived and built a church adjacent to Covenanter Cemetery at the corner of High and Moore’s Pike.

Faris House. This photo belongs to the city of Bloomington.

Faris House. This photo belongs to the city of Bloomington.

The first is Faris House, built around 1853. Faris House is rumored to have been a station on the Underground Railroad, and a now-collapsed earthen tunnel in the basement appears to lead toward the brick dairy building a short distance farther down the hill. Bloomington is rarely included on modern maps of Underground Railroad routes, but it must have had at least sporadic activity. That said, the story that is most commonly repeated about the house is completely untrue: that escaped slave Robert Anderson was sheltering at the Faris farm when the Emancipation Proclamation was proclaimed. According to the myth, Anderson went directly to the courthouse and had himself registered as a free man of color, and stayed in Bloomington for the rest of his life, being given land immediately adjacent to Covenanter Cemetery in return for his labor. A descendant of his informed me that Anderson had toiled as a slave in Kentucky under three different masters, the last of whom freed him. After the Civil War Anderson came to Bloomington and bought the land next to the cemetery. “He was a free man when he came here, and he purchased that land,” I was told, and old church receipts prove his payment installments. Hopefully this will be the end of a story that has circulated for generations.

This photo belongs to the City of Bloomington.

This photo belongs to the City of Bloomington.

The next old house is often called Raintree House for the raintrees that formerly stood on the property, but it should by rights be called Millen House. Built by William Millen around 1845, the house is very similar in style to the Faris house, with five windows across, a central front entry, and chimneys on both ends. If this house had been only a single room deep, it would have been an I-house, but when a house is two rooms deep, it’s known as a massed-plan house. See the Wikipedia entry on the building at http://en.wikipedia.org/wiki/Millen_House. All of the Green Acres neighborhood used to be the Millen farm. The house is sadly orphaned today, for virtually all of its remaining yard was divided up for little ranch homes after the Second World War. The house looms in a mournful way above the back yards of these 20th-century spec cottages, hemmed in on all sides.

The next old house is the Thomas Smith house, which is the oldest structure of this collection, supposedly built in 1833. There are barely a handful of houses from this era remaining in the whole of the county. The frame part of the house is an addition; the brickwork is original and the bricks were dug on-site, as with the other houses. This house is smaller than the others, reflecting the frugality of the times in which it was built. Apparently a private graveled drive once ran between Smith house and Faris house, directly crossing High Street (which would not have existed in those days). The ghost road runs through the side yard of a house on South High street, whose owners have never been able to plant anything or garden on that side, due to the thick layer of gravel underlying the lawn. The house is now surrounded by modern houses of the Covenanter Hill neighborhood, all of which used to be the family farm.

A historic image of Blair House. Image is courtesy Derek Richie of Bloomington Fading. Thanks, Derek!

A historic image of Blair House. Image courtesy Derek Richie of Bloomington Fading. Thanks, Derek!

The fourth house, Blair house, can be regarded as the frame version of the preceding style of brick homes. Built in the 1860s, it is located in the heart of Maple Heights neighborhood, which of course represents the extent of the original farmstead. The Blair family were also staunch abolitionists. The Blairs originally buried their dead near the family home and later in the Presbyterian Cemetery (White Oak). The house today has a completely different aspect due to a 1920s-era brick porch. There is an interesting blog entry about the house and the family at http://bloomingtonthenandnow.wordpress.com/2013/12/28/823-n-maple-street-the-historic-james-blair-house/, posted by Derek Richie of Bloomington Fading.

The thing that interests me is that all four of these 160-year-old-plus houses are still standing and  inhabited, while many other notable homes have been demolished. The town was by no means all-Covenanter, and yet the Covenanter houses appear to be over-represented in the historic record for this era.  All of the four men who built these houses were local community leaders; but so were the builders of many now-vanished old farmhouses. For some reason, these four survived, and in architectural terms, Bloomington is the better for it.

The morbid element of old homes

Over the past ten-plus years working the “Homes” beat for the Herald-Times, I have wandered through hundreds of houses, asking questions and recording information that never made it into print for one reason or another. One recurring item that always fascinates me is when owners of old houses say (with a barely visible shudder) “Old So-and-so, who owned a prominent local business, built this house in the 1890s, and they say he died in the top left bedroom and was laid out in the parlor.” This kind of information–a corpse in the parlor–is always seen by those who pass down the legend from owner to owner as exceptional, not the rule. Quips about ghosts and hauntings are bandied about, because it’s assumed that the presence of a dead body in an old house is a very rare thing.

But if the truth be told, every single house built in Bloomington before the early 20th century, whether wealthy or poor, most likely had at least one corpse in the parlor. Bloomington had no city hospital until 1905, and in its first years the institution was a small and limited place where appendixes were taken out and grievous injuries addressed, not a place where people went to die. From time immemorial, ill people had always been tended by their relatives in the comfort of home, and if they required a doctor’s services, the doctor came to them. Why on earth would a sick person haul himself or herself up out of a sickbed and totter to a doctor’s office?  Or to a hospital, for that matter? In that era, one’s own bed was the proper place for a sick or dying person.

coffins

Every furniture store in the 1800s stocked coffins, and this remained the practice until professional funeral homes appeared in the early 20th century.

This means that virtually every house built in Bloomington before the turn of the last century experienced one or more deaths within its walls, often of small children. But houses built in the 1910s and ’20s, after the concept of migrating to the hospital to die had taken hold, would have been largely death-free (unless the owners had been extremely impoverished). Beginning by the ’20s funeral homes began to offer grieving Bloomington families an alternative to laying out Granddad in the parlor.

But once upon a time, the elderly and the ill died at home. Grieving families washed and laid out the corpse of their loved one as a matter of course, and friends would come with food to share in the time of grief. A coffin would be purchased at the local furniture store, and the memorial would be held at home in the parlor. We of the 21st-century are so divorced from the process of death that we regard it as a gruesome oddity when we learn that a former owner of an old home died in his own bedroom. Just remember: this wasn’t a case of just one Victorian businessman in the bedroom of one old house; it was everyone, and everywhere: rich and poor, genteel or criminal. But lest you stroll through the city’s historic districts and contemplate all these deaths with a shiver, remember that any morbidness is yours, not theirs. Death prior to the 1910s was accompanied by warmth and love and care. And ask yourself, in your heart of hearts: wouldn’t you rather breathe your last in the comfort of your own bedroom with your loved ones around you? I certainly would.

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