Writing back to cancer [Austin American-Statesman]

Oct. 05--Cancer is "SO not a 'journey.' Journeys are voluntary, and they connote something positive. Perhaps baskets of goodies to Grandma's house? An adventurous trip to a faraway place? This is neither. ... There is nothing fun about it, and it is filled with the deepest sadness and loss I have ever known. Not a journey at all."

Like she regularly does, Sandy Kugelman posted her brutally honest thoughts about cancer on her Facebook page last month. Since she was first diagnosed with breast cancer in 2001, Kugelman's writing -- first with emails, then on social media -- began as a way to keep everyone informed, but it has become a chronicle of Kugelman's defiance against the disease.

"She's a beautiful writer, and she's writing about this experience in a unique way from her heart," says Ray Anne Evans, executive director of Austin'sBreast Cancer Resource Center. "She does it with humor and tragedy. It's beautiful; it's literature."

Sometimes the posts are funny, sometimes she writes directly to the cancer or to the medications, and sometimes they are filled with sadness. The posts are always her truth that she's feeling in that moment.

Don't call cancer a journey. Or a battle that she's fighting. This isn't a war she decided to enter. Instead, cancer is part of her everyday life. She is living with cancer, and while yes, the cancer might slowly be killing her, she also could get hit by a bus tomorrow. And so could you, she says.

The optimism, the defiance and her ability to compartmentalize her life into cancer and not cancer has kept her moving forward.

"Cancer is not a meaningful, wonderful life experience to define my life by," says Kugelman.

She has called cancer a squatter that has taken up residence in her body. "I don't hate him. I'm not angry with him. ... I let him live here as long as he doesn't cause a lot of trouble," she wrote in September 2010.

But sometimes that squatter does get out of control. It has invaded her lungs, liver, bones and brain. She will not be able to truly evict it. Instead, every day is a balancing act between her and cancer. Sometimes it is in check and behaving nicely; other times it seems to have taken over.

One in eight women will get breast cancer, but only about 20 percent to 30 percent of those will have Stage IV, the final stage that means the cancer has metastasized into other reaches of the body. Only 20 percent of people with Stage IV cancer live to the five-year mark. Kugelman is one of those women.

In the beginning

Kugelman, 51, was 38 when she was first diagnosed. She didn't think she had any of the risk factors. She was a vegetarian, often a vegan, who didn't eat sugar or drink alcohol. She was a La Leche League leader and a labor support doula. She had three children, ages 3, 8 and 11. She didn't think she had a family history, either. Breast cancer was not anywhere on her radar.

And then she felt a lump, and she knew this was different than a breast lump that might happen with breast-feeding.

She was diagnosed with Stage II breast cancer. It was terrifying.

She met with a surgeon the next day. It would be a mastectomy and chemotherapy, and then it would be over.

"At the time, the trauma of losing a breast was significant, and I can remember that the person who really helped me was my mother," Kugelman wrote in August on Facebook, when she marked the 12th anniversary of the mastectomy. "(My mother) said, 'You just got to get that out of you, Sandra.' And that made sense. Suddenly the emotion of the amputation was dissolved into the appropriate context for me, and I could move forward because I wanted to LIVE more than I wanted a breast. ... It is laughable to me today that having my breast 'taken' was such a big friggin' deal. I am so over it. Trade that for LIFE with my KIDS???? Are you JOKING???? It's a penny gumball (and frankly wasn't much bigger anyhow)."

Daughter Ellie Hankin, 20, who is studying kinesiology at University of Texas at Arlington, says she doesn't really remember when her mom didn't have cancer, but she does remember that first diagnosis. "I remember knowing that something was wrong," Hankin says. "My dad said, 'Leave her alone; she's sick.' "

Not long after that, Hankin was told what the sickness was. Kugelman tried when the kids were younger to not have their childhood be all about the cancer. She would tell them when there was a change, but, she says, "I didn't want to take them on the roller coaster ride."

Kugelman's first experience with chemotherapy was terrible. With no insurance, she couldn't afford the $100-per-pill anti-nausea medication to stop the constant vomiting. She also didn't have a regular doctor.

Even though she was sick with chemo, she looked toward to the future. She stuffed the side of the bra that no longer had anything to fill it up and she went on job interviews. She got a job as a speech pathologist in the Del Valle school district.

Eventually the chemo ended. She and her husband decided to divorce. She had a fresh start. She thought she was done with cancer.

Welcome to the IV League

But in 2004, something wasn't right. A new tumor had appeared. She underwent surgery, expecting a Stage III diagnosis, which would mean it was near where the breast tissue was but had not spread very far.

Kugelman assigned a friend, Anna Michele Taylor, the job of delivering the surgeon's diagnosis, with special instructions to put a positive spin on it no matter what happened. They expected the surgeon to go in and maybe remove part of the lung or the sternum, and the plastic surgeon would then repair the damage using muscle from her back.

They did not expect the surgeon to feel a lung that felt like pebbles. It was full of cancer. He sewed her back up without removing the cancer. It was Stage IV, the final stage, the one people die from.

Taylor, who would later become an intensive care unit nurse, says, "This is the worse thing I ever had to tell anyone."

She just gave Kugelman the facts. It was in the lung. It had metastisized. They were going to treat it.

"It was disturbingly upsetting," Kugelman says. "It was my worst fear, a nauseatingly horrible fear."

She was overwhelmingly sad, but she knew she needed to tell the kids. She didn't want to tell them lies, but she wanted to give them hope. Yet, she knew it would change them forever and they would grow up with a lot on their shoulders.

"They see the tragedy of it," she says. "It's not happy no matter what you do. They are looking at losing their mother."

Hankin says her mom hid a lot from them, not wanting them to see how sick she was. "She's really strong," Hankin says. "I can't imagine having to go through everything she's going through ... she's strong and selfless."

This time Kugelman had a doctor, Carsten Kampe, who made her a partner in the process. She is involved in the decision-making about treatments, but she doesn't look at her scans until after the cancer has been reduced by radiation or chemotherapy. She does not want to know her prognosis.

"If you tell me, I might believe it," she says. The average lifespan for someone with Stage IV breast cancer is two years, she says. "(Expletive) that!"

Kugelman sought out other people who were Stage IV. "I needed hope," she says.

In 2002, the Breast Cancer Resource Center had started a support group for women with this stage of cancer. They call themselves the IV Leaguers -- a nod to the stage, the IV that brings them chemotherapy and the Ivy League because they are a prestigious group. This support group was the first of its kind in the country.

"They don't have the same issues as women with an earlier stage," Evans says. "They live with the looming thought they are going to die."

Yet, they set a goal of living as long as they can because they want to see their children grow up and their grandchildren, Evans says.

League members support one another and have become close friends, but they also watch leaguers die. Kugelman hates when people talk about her positive attitude. "Attitude has nothing to do with cancer," she says. "I've had 35 to 40 friends die. They didn't have bad attitudes."

She and fellow IV Leaguers were featured in the 2011 documentary "Pink Ribbons Inc." There they talked about Stage IV being the stage no one wants to talk about and not enough research being done to find the cause of cancer, not just a new treatment.

She was also part of the center's 2010 Art Bra calendar, in which she wore a bra that had one bra cup and a flat part where her breast once was.

After becoming Stage IV, Kugelman found out she tested positive for the BRCA2, which means she has a genetic mutation linked to breast cancer. Her father's family were carriers, but she never knew that because many of the members of that side of the family died in the Holocaust.

Hankin has thought about getting tested, but she says her mom has asked her not to. "She doesn't need to be worrying about something else," Hankin says.

Life with cancer

Cancer soon became this thing Kugelman had to do. She kept working while doing chemotherapy. She compartmentalized. Cancer was only for the time she was in the chemotherapy chair or at the doctors' offices. Home was for the family and making it to the next milestone: bar and bat mitzvahs and high school graduations. Work was for helping students with their speech.

"I don't want to think about cancer all the time," she says.

At times the cancer was controlled and the drugs were working. Other times, they stopped working and the cancer went to a new place. She has never had no signs of cancer as some in the IV League have.

"In spite of the fact that I sit in an infusion room every single week, I actually do not identify myself as a 'sick' person," she wrote in September 2010. "Is that weird?... But I KNOW I have Stage IV cancer. So why is it that every time there is disease progression, it takes me back to the raw nausea and profound grief of that very first diagnosis? How is it that I manage to almost forget that I'm in this game until it returns?"

At times she has had to face her mortality. She has picked out a final resting place. She lay down on the grass and looked up at the sky and thought that it was a nice place.

Last December when the cancer was found in her liver, she had to stop working. Like she had from the first diagnosis, she turned to writing and to her community. She asked for their prayers and good wishes, and since August, grocery shopping and rides for her youngest son. "People are so good at heart," she says.

She reassessed the arrangements she had made for her children when they were young. Yoni and Ellie now are out of the house, but she needed a new plan for Ezra, who is in high school. It kept her up at night for three months until she found a peaceful solution.

And then, the chemo started to work and she felt amazingly better. "When treatment works in this dramatic way, it is nothing short of a miracle," she wrote in May. "... It is hard to express what it is to be 'going down' and then miraculously bob back to the surface. It's the ultimate in second chances."

This summer, she started to notice she was having trouble with her thoughts. She could find words but not concepts. She wasn't getting sarcasm and nuances, things she loves. She was socially uncomfortable. "I lost who I was," she says. The cancer was now in the brain.

"This is like a game of Whack-a-Mole," she wrote in July. "One place gets knocked down and another spot comes up. I knew there was something really wrong, though, and I felt in my gut that it had to be brain mets (metastases). So it is. And now the good news is that there isn't anything to be afraid of anymore."

She contacted Hospice Austin, not to begin that process, but just to see what hospice was all about. The thought of hospice was one of those things she had avoided, but now it didn't seem as scary. "It was a very tough decision," she says. "But it felt so right. When I can't be me anymore, I'm not going to want to keep going on. Why not be proactive?"

She did radiation and the tumors shrank. She's said goodbye to her hair forever as the radiation killed the follicles. The many hairstyles of Kugelman -- blond spikes, short brown bob, darker curls -- wouldn't be returning.

"I once told her, 'Every time you get a really good haircut, something happens,'" Taylor says.

She gained weight on steroids and couldn't get enough food, sometimes eating nine meals a day.

Last month, she returned to chemotherapy for the cancer in her liver. Food is hard to digest. "Once again, I am toying with the idea of getting a T-shirt printed that says, 'I'm not fat. I just have cancer in my liver.' Too much?" she wrote.

"I've never really seen her give up," Kampe says. "I don't think it's in her nature. She understands the situation so well. When the time comes, she will tell me that 'I'm done now.'"

That time is not now. Cancer is more of an art than a science, Kugelman has written. She and Kampe email almost daily, and they keep treating it.

She says her goal is always to be right here, right now. "I'm not going to live in the wreckage of the future."

Yet, she and Kampe do plan ahead. When one thing stops working, they try something else.

Kugelman has found comfort in the simplicity of life and the simplicity of the life her backyard chickens lead. They were Ezra's idea. He campaigned for a year to get them until she finally gave in. Now she finds joy in watching them. They get up and go to bed at the same time every day and in the hours between, they hunt and peck and miraculously lay eggs. All three have different personalities. "It puts me in a completely zen, peaceful place," she says about when she sits and watches them.

"I decided a while ago not to be terribly anxious about my chickens. Sometimes they stand at the door ringing the bell for treats and I say, 'Go BE CHICKENS!!!!' In other words, dig and forage, dust bathe and explore," she wrote in August.

"And this leads me to a combo leap of faith/greater understanding: I need to be a human. Today things are going so much better. I'm in less pain and feel like I've somehow got this all under control. I also know that all things are temporary, and if that means that there comes a day that I can no longer 'be a chicken' (i.e., do the things that I naturally love to do), that will mean that my quality of life is not good and I will need to make alternate decisions. ... I will always be a chicken until I cannot be one any longer. And right now, I'm solidly a chicken and doing chicken things. BOK BOK BOK!!!"

Watching the chickens, getting treatments, enjoying the moments with her dog, Cosmo, curled up beside her, "This is OK right now," she says.

And she tells her posse, as she calls her followers: "Please keep sending those prayers, karma, thoughts, woo woo, Jew Jew, love, etc."

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