Susan Bohardt

Susan bravely fought her retroperitoneal sarcoma but lost the battle in December 2008. The following story was written by her husband Bob as a tribute to Susan and for everyone who carries on with their life during the most difficult time anyone can face. Throughout her treatment, Susan was determined to carry on with life as normally as possible for herself but more importantly for her husband, her daughters and grandkids. She succeeded. The emotions are raw, but they are real.

The day began as it had for the last 20 years. Up too early, drowsily stumbling through breakfast and bathroom perfunctorily. Mumbling about the bane of the workaday world and vying for the bathroom sink, nothing new, same shit, different day.

Their marriage of eighteen years had been, for the most part, a successful partnership. Oh, it was fraught with the usual bickering and bantering of couples and lovers, the kind that doesn’t really need to be articulated but often is. Expressions that communicate soulfully and with the familiarity that both satisfies and disdains. They had the perfect union of muted passion and interdependence. They supported each other through the doldrums of time and endured tepid countenances from each other. Comfort and loyalty were the glue that held them together. They would grow old together. He was sure of that.

“Feel this,” she said, placing her hand on her abdomen just below her left breast. He reached over and felt it. It was firm, like a knot in a rope. Thus, the nightmare began.

The diagnosis came crashing down, creating a vortex of denial, fear, grief, sorrow and anger that engulfed them. It was cancer, they said, “retroperitoneal sarcoma,” somewhat of a rarity and bad, the prognosis unclear. Second opinions at a world-renowned cancer center only confirmed the insidious beast. Radiation and surgery were chosen as the initial weapons for a battle that was deemed only palliative.

The war was on, her life no longer her own, given over to processes and procedures that would attack her over and over and render her dependent. Surgeons and oncologists were now her champions. God was in there somewhere (divine intervention was needed), but how could he allow this to begin with? Their faith impeached at best.

Nausea and vomiting consumed her. Retch after retch depleted her body and soul. Twenty-five days of radiation made sure of that. “I don’t think I can do this,” she said. “You have no choice,” he replied. Colored balloons and the joy that only small children can impart marked the end of the first round of torture. At last she could rest for a bit, heal up for the next battle.

It was the first week in December. The day of the surgery finally arrived and they waited in the cloistered “family room” while the surgery was taking place. Her husband, three daughters and two grandchildren were there. At first there were regular progress reports; the surgery was “going smoothly.” Six hours or so in, they began to wonder, after eight they cried, then the lights went out and they were the last family out of thirty or so remaining. Over twelve hours had passed. In the thirteenth hour, down a dimly lit corridor, like a specter cutting through fog, the surgeon appeared. He had removed her stomach and spleen, part of her pancreas and a section of colon. It was radical surgery that left her fighting for her life. They filled her with fluid, twenty pounds worth, and then drained her as fast as they had filled her. A projected six-day stay turned into eight, then ten and finally fourteen.

Her release lasted less than a day before she developed a fever and was readmitted. She had “an abscess,” they said. Five more days in the hospital, then home with a central line for IV meds and parenteral feeding. It was Christmas. Snow fell in Houston. They were a thousand miles from home. There was no respite from the nausea and vomiting for the month that followed.

Home at last. She had troubles at first but the medicinal properties of home did wonders. She was feeling remarkably well and even eased herself back to work. It was miraculous. She had worked there for over twenty-three years. Her whole life had been dedicated to providing emergency care for children. It was her life and now she was back! Back to her passion, she was on top of the world.

A month later she had some abdominal discomfort. “Probably nothing,” her physician said, “but we better make sure.” Another scan and another plunge into the throes of despair. The beast was rearing its ugly head again.

Cancer patients call it a roller coaster, but there is nothing thrilling about it. It is the climb to the top with no place to go but back into the black hole of uncertainty and despair. Hope is the only light that can guide you through the recurring nightmare of the ride. Hope for a beginning or hope for an end.

They tell you that retroperitoneal sarcoma is mutant cells that hijack your body. There are, maybe, ten thousand cases a year. They don’t tell you that it rips your soul apart or that it challenges your faith to the extent that it becomes an altered state of consciousness. They don’t tell you that you will suffer in perpetuity or that your life will be completely in the hands of others. You will have to trust. Trust…?

The news was grim. Metastasis. The options few. Fight it now or fight it later, it is a “quality of life issue,” they said. “Do chemo now and you have a 1 in 10 chance for a couple more years,” they said. Without chemo, death will come within a year, with chemo maybe two to three years, some choice.

So the controlled poisoning began. They had it down to an art form. She received agents to kill, agents to protect and agents to prevent. Sedatives for the suffering brought on by the despair and isolation that lurked in her consciousness were like putting a Band-Aid on a bullet hole.

Eight months of languishing in a sea of hope, then a star on the horizon. The tumors “are definitely shrinking,” they said. The roller coaster was rising again. Christmas, then New Year, came and went again and another trip to Texas. Things are still stable, they said. “Let’s see what happens in a couple of months.”

It was the mildest January in seventy-five years. She went on two-mile walks, determined to get strengthened for what was sure to be another slugfest. She gained about 10 pounds and her hair was coming in thicker and longer by the day. These were her best days in a year. She was determined that her grandkids would remember her in a healthy state.

The ride in the first car of a roller coaster is the scariest and most exhilarating. Death is staring you in the face. So, you throw up your hands and submit. If only the cancer ride was that easy. The smooth ride had crested and now she was hurtling toward more “treatment.” The disease was growing again.

It was June. She had surgery again, another part of her gone (and motor function to her left thigh with it). She hobbled the neighborhood that summer trying to find the resolve for another round of the juice.

As fall approached, she was ready. A clinical trial drug had been made available. So back on the ride she went, creeping along slowly through the regimen. She had hit a plateau, she was riding on level ground again. Six months later, her oncologist brought up the “R” word. Dare she believe?

She was 30 months out now. She was beating the odds. Then seemingly out of nowhere her gall bladder slugs her and it’s back to the OR. Her prior surgeries precluded an endoscopic procedure. So, she had another laparotomy and spent another week in the meat grinder, pacing the halls with the other walking wounded. She knew the drill. It was her third time in two years.

She coasted through the recovery from the gall-bladder surgery through spring and into summer. It was her best summer in three years. There was no surgery and no treatment. Simple times with grandkids and ball games, reading and walking, the good times rolled into November. Sadly, the music died again in Texas; she had regressed. Cold winds had returned. And so, back on the ride she went.

She knew this ride. It took her to Louisville every three weeks, just as it had before. She would ride in feeling strong and willful and leave hours later with her bag of poison slung over her shoulder, and when she got home she would walk four miles on the treadmill, or go to a T-ball or soccer game, for, after all, it was just an inconvenience. It would not run her life; she could tolerate a little poison.

On through another year she trudged. She relished the birthdays and holidays of the warm seasons. She read her books and walked her miles, never looking back and determined to be fulfilled with the future. Halloween came and went but not without consternation. Mysteriously, night sweats and diurnal fevers were on her. No one knew why. Blood cultures were negative, antibiotics useless. Another journey to Houston and more bad news, regression again, time for a different type of poison. Despair was beginning to rear its ugly head but still there was hope. She would never give up. A new chemo regimen would buy more time.

On Thanksgiving, the Christmas tree was trimmed, as was their tradition. No one knew it would be the last. She loved the Christmas season most of all. Those damned fevers were taking a toll and she was short of breath.

Two weeks before Christmas her world came to a grinding halt; the ride was careening over the edge, barely on the tracks. They had called that day. Myelodysplastic syndrome was what they had to say. She baked cookies with the grandkids that night but was visibly disturbed. As we headed home, she looked at me and said, “I am afraid this is the beginning of the end.” As I held her hand, she said, “I don’t want to die.”

Christmas came and she was dragging, struggling for the strength to be there for our kids and grandkids. Miraculously she made it through dinner and exchanging gifts. Two days later she got some blood to help with the shortness of breath, but it did not work. The next morning an angel was at her door, calling her to come home. We all did what loved ones do but it was not enough. The ride was through.

About Sarcoma Alliance

The Sarcoma Alliance strives to improve the lives of people affected by sarcoma through accurate diagnosis, improved access to care, guidance, education and support.