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Mixed gladness and sorrow

The post-chemo CT scan was not what we had hoped for, yet it was not a total disappointment. The same three small tumors that were visible after my surgery in March are still there; but the good news is that they have shrunk by 50%. The largest is just over half an inch across; the two smaller ones are the size of peas. And yet, the bad news is that they are still there, because it means they are probably still viable and active rather than dried-up shells. And because the tumors are still there, it suggests that my cancer is largely resistant to the drugs.

My particular kind of cancer is extremely rare and represents less than two percent of all ovarian cancers. In general, it’s fast-growing, and there’s very little research being done because so few women fall ill with it. Its acronym, Mixed Mullerian Tumor or MMT, is usually prefaced by another “m” word: “malignant.” (It’s also called ovarian carcinosarcoma.) I first noticed symptoms in early January and was fading fast by March, when they surgically removed two large masses. I felt much better immediately, and sailed through the chemo with very few side effects while continuing to work at my job.

Whenever these three small tumors decide to reactivate, I  will probably only have a couple of months left before I start to die for the second time. My oncologist at the Simon Cancer Center in Indianapolis told me that it would make little difference if we were to take the tumors out now, as opposed to waiting for symptoms to return. The fact that there is so little research being done is frustrating, because there are few persons or institutions capable of providing a second opinion. From what I can tell from my Internet research, there is virtually nothing I can do to extend my life. My oncologist advised me to go forth and seize the day (that is, the days that still remain). My own online searches for MMT cancer invariably turn up my own blogs on the subject. (Thanks, Google.)

There is a choice to be made here. Do I want to struggle like mad to extend my own life by any means possible, spending money traveling to distant clinics to speak with experts, even though most likely I will fail in the end, filled with frustration, rage and panic? Or do I continue my quiet acceptance of my fate as a mortal being? After all, I’ve come to a good place in my life, a place where I have achieved all of my major hopes and ambitions. And all of us have known from childhood that we must die at the end. Even if it were feasible, I would have no interest in having my consciousness downloaded into a computer chip. I would not want consciousness under those limited conditions: an existence in which I could never walk again in the woods, inhaling the aroma of pine trees while birds sing.

For now, I embrace the facts of life — and death. This may change if I become more ill down the road, but for now I intend to accept my lot. After all, an important part of growing up is to learn to gracefully accept to play whatever cards we are dealt, instead of making a scene and complaining. I plan to relax with my family and friends, and yesterday I gave notice at my job, effective the end of November. I have projects I would like to complete, and travels to make. Life is a beautiful, complex, challenging, wonderful thing, and I wish to enjoy it fully in the time that remains.

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The historic Borland House

[A shorter version of this article appeared in the Bloomington Herald-Times on Aug. 16.]

The exterior of the Borland house, showing the saltbox-style ell on the back of the structure. The little white shed protects basement steps.

The exterior of the Borland house, showing the saltbox-style ell on the back of the structure. The little white shed protects basement steps. [Click on this or any photo to enlarge.]

Professional historic preservationist Duncan Campbell and his wife Cathy Spiaggia live in one of the oldest homes in Monroe County. Built by Edward Borland in the 1830s, the brick house was a near-ruin when Duncan purchased it in 1986.

“We are only the third owners,” he noted. The Borland family retained the house and the hundreds of acres surrounding it until the 1929, when Edward’s great-granddaughter sold everything to the Furst Quarry Company. The old house then became home to two successive generations of quarry superintendents before finally being rented out in the 1970s.

“People would come out here and swim in the quarries,” Duncan said. “Every now and then I run into someone who remembers the house back then.”

The parlor has Greek Revival trim and original built-in cupboards.

The parlor has Greek Revival trim and original built-in cupboards.

The house when new was one of the most elegant houses in Monroe County, a fitting residence for the man who was one of the leading builders, developers and landowners of his time. (Borland built, or helped build, the first Indiana Seminary buildings, Wylie House, and the original brick courthouse.) Edward Borland and his brother James arrived in Bloomington just after its founding.

“The Borland brothers were interesting men,” said Duncan. “They came from Pennsylvania and were Scotch-Irish. Edward was a master builder and James was a surveyor. We have this idea that pioneers came trudging through with a gun over one shoulder and a coonskin cap, but many of them were wearing frock coats and carrying surveying equipment.”

The dining room.

The dining room.

Between them, the brothers helped to develop the young settlement of Bloomington. James Borland served as the land agent for Perry Township which was at that time government-owned land; money raised from the sale of lots was applied toward the fledgling state seminary which later became Indiana University. Edward, in his turn, served as trustee for the new university, and built himself one of the finest homes in the county.

But by the time Duncan saw it, about 150 years later, the house was sadly run down.

“The walls had five or six layers of wallpaper,” he recalled. “The floors were covered with Masonite and indoor-outdoor carpet that was all mildewed. Every room had issues. Many of the ceilings were bare lath.”

The little stair in the corner of the dining room was once the only entry to a private bedroom above.

The little stair in the corner of the dining room once was the only entry to a private bedroom above.

Duncan’s opportunity began when a young couple expressed interest in buying the house. On their behalf, realtor Bob Dunn asked Duncan and his former restoration-contracting partner Michael Yoakam to estimate how much a full restoration might cost.

That first walkthrough was astonishing.

“The house was 100 percent original: floors, paneled doors, windows, trim, even the hardware on the doors,” Duncan said. “It was one of the few historic houses I’d seen that hadn’t been seriously messed with. I was flabbergasted. I’d lived in Bloomington for years and had never heard about the house.” Beneath layers of paint, parlor trim shaped like Grecian columns represented Greek Revival style, the popular architectural fashion of the 1830s.

Duncan and Michael estimated that with tuck pointing, replastering, and updating the plumbing and wiring, it could cost the would-be purchasers $150,000 if they were DIYers, and perhaps double that amount that if they hired contractors to do it for them.

Astonishingly,  virtually all original trim was still present when Duncan first saw it.

Astonishingly, virtually all original trim was still present when Duncan first saw it.

“The young couple talked to Bob for a few minutes and then drove away,” Duncan chuckled. “Bob came over to us and [sarcastically] said ‘Thanks, guys!’ I casually quipped that I’d buy it in a heartbeat. A week later we started negotiating.”

Duncan scraped together all his money, sold a house he owned in town, and bought the house along with surrounding acreage.

“I spent the whole first week in the basement trying to keep the water heater running,” he recalled. “The electric service was spotty; some of the rooms had never been wired. And over the next several years I did more plastering than I’d ever done before.”

The master bedroom's cabinets have been painted with birds and fish.

The master bedroom’s cabinets have been painted with birds and fish.

He and Cathy had just begun to date two months before the purchase.  After talking it over, they decided she and her two teenagers would move into the house along with him.

“The teenagers weren’t all that happy about it at first,” he laughed, “but they really pitched in and helped do a lot of the messy cleanup.”

Cathy added, “I remember stripping wallpaper with my daughter and discovering signatures, a tracing of a small hand, and even a love poem. It was exciting.”

The music room above the kitchen has Vermeer-like light on the slanting ceiling.

The music room above the kitchen has Vermeer-like light on the slanting ceiling.

The pleasant flagstone patio beneath the sleeping porch.

The pleasant flagstone patio beneath the sleeping porch.

The symmetrical brick structure is a classic I-house (so named because they’re common in the I-states of Indiana, Illinois and Iowa), two rooms wide and one room deep. The central hall and staircase divide the building in half. An original two-story rear ell contains the kitchen and the room above it. A smoke-room on the far end was added slightly later. The basement contains the original baking oven. A unique two-story back porch runs the length of the house.

“The Furst quarry superintendent used the upper level as a sleeping porch,” said Duncan.

Restoration moved forward as time and money became available. Also, Duncan wanted to understand the issues before moving forward, alert to any possible damage to the historic fabric. He utilized antique recipes for lime mortar and plaster when making repairs.

“Cement mortar just tears up these old soft bricks,” he said, looking regretfully at bad repairs made during the Furst years.

Over the years Duncan and Cathy have tended, painted and lovingly restored the house. (Admittedly, there were still unattached doors leaning against walls as late as 2008.) After discovering signatures on the bare wall under the wallpaper in the staircase, they decided to leave that wall unpainted and unpapered. Every guest at his and Cathy’s wedding then autographed the equally-bare facing wall.

“There’s a spirit in an old house that is palpable,” said Cathy. “Memories run all through it. Living here, the house has become a part of our history, and we’re a part of its history.”

“I don’t want to dissuade people from buying a house like this,” said Duncan, “but it takes a lot of time and energy, and it’s not for everyone. But we love this house! It’s just a phenomenal living experience. To live alongside history is exceptional.”

The rear of the house, slowing the original sleeping porch on the upper floor.

The rear of the house, slowing the original sleeping porch on the upper floor.

 

 

An old-fashioned bungalow

[This article was originally published in the Bloomington, IN Herald-Times on July 26.]

The refurbished exterior. Look carefully and you can see where two central porch posts were cut down to balusters. The new window in the gable is actually an antique.

The refurbished exterior. Look carefully and you can see where two central porch posts were cut down to balusters. The new window in the gable is actually an antique.

Susan C.’s 1932 bungalow glows behind the flowers in its front yard, fresh after an exterior refurbishment by Golden Hands and a new paint job by Richard Jenkins. Walking past the flowers and entering the front door is like stepping through a portal into a warm and welcoming past. The interior is filled with Susan’s collection of pre-1850 furniture, vintage quilts and family heirlooms.

Some readers might regard a house built during the Great Depression as fairly old, but in fact it’s one of the newer homes that Susan has lived in.

“I have always lived in old homes,” she explained. “I grew up in Madison, Indiana. My parents really liked redoing old houses, so they would buy little old shotgun homes and restore them, one by one. I lived in fourteen different old houses growing up.”

The old dining table stood for years in the Madison meat market.

The old dining table stood for years in the Madison meat market.

In Bloomington, Susan lived for more than twenty years in the James Faris House (built in the 1850s, and now surrounded by Stier Park). With an old-house background like this, a 1930s bungalow does indeed seem “new.”

“Because I have spent most of my life living in old houses, I appreciate them,” Susan continued. “Each one is unique, each has a different story to tell, and that appeals to me.”

She bought the bungalow seven years ago, wanting to live closer in to town where she could easily walk places. Her grandchildren live only two blocks away and often drop by to visit, and the neighborhood is friendly.

“When I first saw this house, there was something about it that I really liked,” she remembered. “It’s a cute house.”

The cabinetry is new, but was designed to suit the architecture of the old house.

The cabinetry is new, but was designed to suit the architecture of the old house.

The house was in good shape, having had two long-term owners in a row, both of whom kept it in good repair. Susan nevertheless remodeled the kitchen to make it look older. Painted in white, with a green segment in the middle, the new kitchen cabinets faithfully duplicate kitchen style of the 1920s and ‘30s. The only hint that they are new is the solid surface countertop.

“These cabinets were built to match the architecture,” she said. “Phil Parker of Bedford built them, and I drove him crazy because I wanted him to use these ceramic knobs that are all different. He kept saying, ‘don’t you want identical silver knobs?!’”

The addition at the rear of the house.

The addition at the rear of the house.

In the rear of the house she added an addition which contains a spacious study, a back porch, and a new master suite featuring plank floors. The rooms there are filled with Susan’s prized furnishings, including a game table that her father built featuring a checkerboard-painted top. The four-poster bed has hats perched atop each post, and a painting of a pig named Edna hangs on the wall above it.

In addition to the checkered game table, Susan has lovingly displayed examples of her father’s carpentry throughout the house, including a large trunk in the bedroom and a circular table in the living room. Many of his pieces have decorative bands of incised geometric shapes on the tops.

This chair has been handed down through four generations of the family.

This chair has been handed down through four generations of the family.

On the floor sits a small child’s chair, painted in an eye-catching array of brilliant colors that she picked out and painted herself. This little chair belonged to her own mother when she was young, and was carefully preserved and handed down in her family. Now it’s her granddaughter’s turn to sit in it and feel proud.

Susan’s handsome wide-plank dining table was formerly a fixture of the Madison meat market. And speaking of tables, when the addition was built, new closet doors were made using old boards that had formerly served as a tabletop. When the table was taken apart the bottoms of the boards became visible for the first time. To Susan’s surprise, there were three well-worn lines of circular marks on them. The boards for the table had obviously once served as shelving in a cellar or pantry where freshly-bottled canning jars were lined up in rows, year after year. This discovery pleased Susan very much.

The living room is enlivened by an antique quilt and a round table, made by Susan's father.

The living room is enlivened by an antique quilt and a round table, made by Susan’s father.

“I have tried to make the home really ‘me’ over the years, so that I’m completely comfortable in it,” she said reflectively. “I have things in it from people that I love, which make it feel like my home. I feel comfortable and cozy here.”

The refurbishment of the exterior has been the crowning touch that perfects the old-time feel of the house. The pediment of the bungalow porch had never quite pleased Susan, as it seemed visually too heavy, and dragged down by four supporting posts. Golden Hands’ Chris Sturbaum suggested that the inner two posts be cut off since they were not structurally necessary, and he transformed them into a harmonious part of the balustrade. He also added a small antique gable window that he’d been saving for the right project. The pediment looks architecturally lightened and the porch has been opened up as a result, and the bright new paint colors draw approving gazes from passers-by.

When told that her home feels just like an old-fashioned farmhouse, with its folk furniture and quilts, she looked delighted. “Oh, I hope so!” she said; “I hope so.”

The hand=painted ceramic basin was dropped into an antique piece of furniture.

The hand=painted ceramic basin was dropped into an antique piece of furniture.

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 nor 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.

 

 

 

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