A family faces the challenge

By Donna Redman

As a medical writer, I found it ironic that I was given an assignment to write about how to research the next step when cancer recurs within weeks of my daughter learning that her angiosarcoma, a rare soft-tissue cancer, had returned three years after successful treatment. A part of me wanted to abandon the project—a very large part of me. But it became a way for me to step outside myself and view the situation from a different perspective: that of Tammy’s doctors as they struggled to help us find a cure, that of a researcher always looking for the next option, and that of a mother. It also gave me a chance to chronicle how we researched Tammy’s options as her cancer progressed.

As a writer, I’m supposed to listen, really listen, but I learned that we often hear only what we want to hear, even when we are trained to listen. And sometimes that’s OK.

Tammy died Dec. 7, 2002. But she died having fought the battle her own way.

Tammy
When Tammy heard that her angiosarcoma was back after three years, she was devastated. Medicine has made tremendous strides in developing cancer-fighting drugs. However, if not caught and treated early, many cancers are still incurable. They can be treated but not cured. This is particularly true when cancer recurs, or returns after initial treatment. In the best-case scenario, the cancer can be treated as a chronic disease. In the worst case, the patient can extend his or her life by seeking treatments that may or may not be available close to home.

Tammy was a medical research scientist with a PhD in microbiology, and she knew her cancer recurrence was serious. This time the angiosarcoma had spread to her lower spine, threatening to paralyze her. She enlisted the help of family and friends, an easy choice since all of our immediate family live within an hour’s drive of each other near Albuquerque, New Mexico. Tammy, her two sisters, her father, and I supported each other. We cried a lot, and we laughed a lot, too. Tammy had friends all over the country, and they showered her with e-mails and phone calls.

Tammy’s sisters and friends ferreted out information and ran errands for her. I went with her to all of her appointments, local or otherwise, taking exhaustive notes so she would know exactly what was said and what happened. Her father stayed home and fielded questions, phone calls, and mail.

Her oncologist was a receptive listener with a gentle yet straightforward manner, but she had little experience with angiosarcoma, so she referred Tammy to the University of Arizona Cancer Center in Tucson for possible treatment options.

Off to Tucson
In Tucson, oncologist Michael Lobell, MD, suggested a chemotherapy mix of Adriamycin® (doxorubicin) and Ifex® (ifosfamide). Tammy had the chemotherapy five days a week for six weeks.

Meanwhile, a friend began researching on the Internet. She typed “angiosarcoma” into the search box and got a list of 18 sites. One of them was for the Neutron Therapy Facility at Fermi National Accelerator Laboratory (Fermilab) in Batavia, Illinois. Further investigation found that the facility was one of only three facilities in the country that uses neutron radiation to target tumors that don’t respond to conventional radiation. It has been shown to be effective against angiosarcoma, and, since it can be precisely targeted, it offered hope of sparing Tammy’s spinal cord and her mobility.

Illinois
In January 2002, after she finished chemo, Tammy and I flew to Chicago and drove on to Fermilab. Jeffrey Shafer, MD, a radiation oncologist at the Neutron Therapy Facility and Provena Saint Joseph Hospital, Elgin, Illinois, cautioned her that radiation targets only specific tumors; it can’t cure systemic disease like hers. Even so, it could buy her precious time.

And it did. The active tumors in her spine were killed without paralyzing Tammy. She had won a battle in her war against cancer. But the war wasn’t over. In May 2002 she found a tumor the size and shape of a chicken egg on the back of her left thigh.

Tucson and Brachytherapy
Back in Tucson, Dr. Lobell, as well as a surgeon and radiation oncologist, recommended removing the tumor along with a procedure called brachytherapy to kill any cancer cells left behind, but there was a 50% chance the incision would dehisce, or come apart. Tammy was willing to take the risk.

The surgeon removed the new tumor and implanted nine small catheters in the area where the tumor had been. A week after the surgery, high-dose radiation was delivered through the catheters directly to the tumor bed.

Unfortunately, four weeks after the surgery, a 2-inch long portion of the incision split open and refused to heal. It could have been repaired with plastic surgery, but her blood counts were too low to risk another surgery.

By late July, Tammy was having trouble with her left shoulder. Scans showed yet another tumor growing there. Again, we went to Tucson. The location of the tumor made it inoperable and unsuitable for further conventional radiation. Not one to give up easily, Tammy called Fermilab. We left in early August.

Back to Batavia
Dr. Shafer ordered a magnetic resonance imaging (MRI) scan before designing a treatment plan, and it showed tumors, not just in her shoulder, but in her neck and upper spine as well. He told her that he could kill the tumor in her shoulder to stop the pain and kill the tumors in her neck and upper spine with neutron radiation, but she wasn’t going to win her war with cancer. The cancer was simply too invasive.

When I heard the word “palliative” in relation to Tammy’s care, I looked it up in the dictionary and read “to make less severe without curing,” but I chose to believe that didn’t apply to her. It meant cure, surely.

When I heard, “This isn’t good, this really isn’t good,” I chose to believe, “OK, it wasn’t good, but we could still fix it.” We would find something somewhere that would finally, once and for all, annihilate each and every cancer cell in her body.
When we got back to our hotel room after our session with Dr. Shafer, Tammy was quiet for a long time. Finally she said, “I prefer denial. I’d rather go out feeling crummy from chemo than sit and wonder if each day was going to be my last.”

She had neutron radiation to her shoulder, her neck, and her upper spine. She went home with hardly any pain and with much more mobility than she had when we arrived.

As soon as we got home, we called Dr. Lobell in Tucson to see if there was any chance she could participate in a clinical trial, a research study conducted with patients who volunteer to participate and test new treatments and drugs. If all other treatments fail, a clinical trial might offer an avenue of hope.

Dr. Lobell knew of several clinical trials that might be promising, but he was particularly enthusiastic about one drug that blocks protein uptake by cancer cells without ill effect on healthy cells. It starves the cancer cells without serious side effects. Tammy didn’t meet the qualifications required to participate in the trial; the dehisced wound still hadn’t healed and her low blood counts persisted.

Oxygen Therapy
Her radiation oncologist suggested she undergo hyperbaric oxygen therapy, initially used to treat deep sea divers who developed the bends, but also effective in encouraging wounds to heal. Tammy’s twin sister Terri, a physical therapist, found a hyperbaric oxygen facility in Santa Fe. They agreed to treat Tammy.

For nearly six weeks we made the three-hour round trip to Santa Fe five days a week. Tammy sat in a large chamber that had room for 12 people and received hyperbaric oxygen for 90 minutes per session. The radiation burns on her neck healed within four days. Slowly her dehisced wound began to heal. As a bonus, the marrow in her bones that had been damaged by radiation began producing red blood cells.

But though she was gaining ground, her cancer was growing even faster. Tumors invaded her lungs and her spleen. On Nov. 9, 2002, she was hospitalized, and on Nov. 12 she agreed to hospice care.

“When we’ve tried everything and it becomes an issue of causing more problems, more side effects, and the disease is still not under control, then it’s time to change strategies and shift the focus from fighting the disease to making what life the patient has left as meaningful and as comfortable as possible,” says Dr. Lobell.

That’s where hospice comes in. The focus shifts from treating the disease to making the patient comfortable. In New Mexico, that usually means providing the equipment and professional staff so the patient can receive medical care at home.

Tammy was never able to come home. Her needs for medical attention were too great. Hospice provided her care in the hospital, and her original oncologist in Albuquerque came to check on her every day. But with hospice care she was in a large private room so family and friends could visit or stay with her, and we did most of the time.

Though Tammy’s last year was terribly difficult for both of us, we had a grand time on those road trips. I treasure that year. We sang along to raucous music on the car stereo; we ate terrible food; we made horrible macabre jokes; and we got to know each other, not just as mother and daughter, but also as friends and war buddies.