Cancer-Diarrhea-of-the-mouth

I have learned over the years how people can say the most horrible things when trying to be compassionate, and lately I hear more and more. Here is some food for thought on saying the wrong thing. And just try to think about how you would feel if the shoe was on the other foot.

How not to say the wrong thing

April 28, 2013 12:11 am

When Susan had breast cancer, we heard a lot of lame remarks, but our favorite came from one of Susan's colleagues. She wanted, she needed, to visit Susan after the surgery, but Susan didn't feel like having visitors, and she said so. Her colleague's response? "This isn't just about you."

By Susan Silk and Barry Goldman

"It's not?" Susan wondered. "My breast cancer is not about me? It's about you?"

The same theme came up again when our friend Katie had a brain aneurysm. She was in intensive care for a long time and finally got out and into a step-down unit. She was no longer covered with tubes and lines and monitors, but she was still in rough shape. A friend came and saw her and then stepped into the hall with Katie's husband, Pat. "I wasn't prepared for this," she told him. "I don't know if I can handle it."

This woman loves Katie, and she said what she did because the sight of Katie in this condition moved her so deeply. But it was the wrong thing to say. And it was wrong in the same way Susan's colleague's remark was wrong.

Susan has since developed a simple technique to help people avoid this mistake. It works for all kinds of crises: medical, legal, financial, romantic, even existential. She calls it the Ring Theory.

Draw a circle. This is the center ring. In it, put the name of the person at the center of the current trauma. For Katie's aneurysm, that's Katie.

Now draw a larger circle around the first one. In that ring put the name of the person next closest to the trauma. In the case of Katie's aneurysm, that was Katie's husband, Pat.

Repeat the process as many times as you need to. In each larger ring put the next closest people. Parents and children before more distant relatives. Intimate friends in smaller rings, less intimate friends in larger ones. When you are done you have a Kvetching Order. One of Susan's patients found it useful to tape it to her refrigerator.

Here are the rules. The person in the center ring can say anything she wants to anyone, anywhere. She can kvetch and complain and whine and moan and curse the heavens and say, "Life is unfair" and "Why me?" That's the one payoff for being in the center ring.

Everyone else can say those things too, but only to people in larger rings.

When you are talking to a person in a ring smaller than yours, someone closer to the center of the crisis, the goal is to help. Listening is often more helpful than talking. But if you're going to open your mouth, ask yourself if what you are about to say is likely to provide comfort and support. If it isn't, don't say it.

Don't, for example, give advice. People who are suffering from trauma don't need advice. They need comfort and support. So say, "I'm sorry" or "This must really be hard for you" or "Can I bring you a pot roast?" Don't say, "You should hear what happened to me" or "Here's what I would do if I were you." And don't say, "This is really bringing me down."

If you want to scream or cry or complain, if you want to tell someone how shocked you are or how icky you feel, or whine about how it reminds you of all the terrible things that have happened to you lately, that's fine. It's a perfectly normal response. Just do it to someone in a bigger ring.

Comfort IN, dump OUT.

There was nothing wrong with Katie's friend saying she was not prepared for how horrible Katie looked, or even that she didn't think she could handle it. The mistake was that she said those things to Pat. She dumped IN.

Complaining to someone in a smaller ring than yours doesn't do either of you any good. On the other hand, being supportive to her principal caregiver may be the best thing you can do for the patient.

Most of us know this. Almost nobody would complain to the patient about how rotten she looks. Almost no one would say that looking at her makes them think of the fragility of life and their own closeness to death. In other words, we know enough not to dump into the center ring. Ring Theory merely expands that intuition and makes it more concrete: Don't just avoid dumping into the center ring, avoid dumping into any ring smaller than your own.

Remember, you can say whatever you want if you just wait until you're talking to someone in a larger ring than yours.

And don't worry. You'll get your turn in the center ring. You can count on that.

Silk is a clinical psychologist. Barry Goldman is an arbitrator and mediator and the author of "The Science of Settlement: Ideas for Negotiators." They wrote this for the Los Angeles Times.

Read more: http://www.post-gazette.com/stories/opinion/perspectives/how-not-to-say-the-wrong-thing-685333/#ixzz2TKBWCVRA

http://www.wtae.com/news/local/allegheny/charity-founder29-fights-stage-4-breast-cancer/-/10927008/19897658/-/15m8pxd/-/index.html

Charity founder, 29, fights stage 4 breast cancer

Kate Crawford steps down as CEO of Project Sweet Peas

UPDATED 7:58 PM EDT Apr 25, 2013

PITTSBURGH —Kate Crawford was diagnosed with stage 4 breast cancer in February. At that time, she stepped down from her position as CEO of the charity, Project Sweet Peas, which she founded four years ago. Project Sweet Peas helps families who have children in critical care units, and was Kate's creation after her first child died in the neonatal intensive care unit at Children's Hospital.

Now she spends a lot of time at another hospital in Pittsburgh. For two hours once a week, Crawford sits in a chemotherapy room at Magee-Womens Hospital. The  cancer has now spread from both breasts to her liver, head, shoulder, ribs, spine and pelvis.

Related link: Kate Crawford Rockin Runners on Facebook

Now, her three children have become her focus and her reason to be the best mother she can be, despite her pain and fear.

Her husband, Steve, a police officer in their hometown of Rostraver in Westmoreland County, is full of admiration for his wife.

" I admire her sheer determination to want to do everything for the children. She wants them to smile from ear to ear regardless of what pain she is in," Steve said.

The level of Crawford's disease is daunting. Her doctor told her that she has less than a 5 percent chance of being cured. When she first found out how much the cancer had spread, she asked the doctors if she was going to die.

"They said they would try to not let that happen," Crawford said.

As news of her cancer spread through social media, Kate became the focus of fundraisers, a charity bucket list, and invitations. The Pittsburgh Pirates asked her and her family to a baseball game, and Pirates manager Clint Hurdle gave the kids a tour of the clubhouse.

Crawford is also walking in the Susan G. Komen Race For The Cure on Mother's Day for the first time. She will be leading her own team of 40 people, one of the biggest teams in the race.

But in the end, what she really wants is for her children to remember things they have done as a family.

"Even though mummy was sick, mummy tried her hardest. They got to see things with me so that they have good memories," Crawford said.

Read more: http://www.wtae.com/news/local/allegheny/charity-founder29-fights-stage-4-breast-cancer/-/10927008/19897658/-/15m8pxd/-/index.html#ixzz2TK1XsHQ5

Belle Vernon mom savors each day despite uncertain future

Inspired by Randy Pausch, 29-year-old focuses on what she wants for her family

May 12, 2013 12:24 am

Pam Panchak/Post-Gazette

Kate Crawford gives a push to her son, Stephen, 3, and daughter, Lily, 4, while her other daughter, Grace, 4, waits her turn as they try out the newly installed playground equipment in the backyard of their Belle Vernon home.

Click image to enlarg

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By Anya Sostek / Pittsburgh Post-Gazette

This Friday, Kate Crawford's twin daughters will get manicures. They will wear fancy gowns. Her son will wear a tuxedo. And they will parade across the Belle Vernon High School auditorium to join the pre-prom Grand March.

Her daughters, Lily and Grace, are 4 years old. And their mother would like a peek into the future, to see what it feels like to watch them go to prom.

Ms. Crawford, 29, whose stage IV breast cancer has spread to her liver, spine, shoulder, ribs and pelvis, is an optimist. But -- having coped with more bad news in the past six years than many people see in a lifetime -- she's also a realist.

She has been told that she has a 30 percent chance of surviving five years. Sitting on the couch of her Rostraver home, she does the calculations aloud. In 10 years, her daughters will be 14. Prom is still three years after that. "Thirteen years, that's pushing it," she says. So Friday it is. "If I can see them now," she says, "that's just as good for me."

Since 2007, Ms. Crawford has watched her first daughter survive only three days, given birth to premature twins, and had such a traumatic birth of a premature son that she required seven blood transfusions.

In the process, she has become very good at coping with the bad. While pregnant with her son and taking care of 1-year-old twins, she founded a nonprofit organization called Project Sweet Peas to provide support to parents of premature babies. In just three years, it has helped more than 6,000 parents in 20 states.

Post-cancer diagnosis, she's turned the positive projects toward her own family. Inspired by Carnegie Mellon University professor Randy Pausch's story in "The Last Lecture," she wrote up a "Mommy Bucket List" to provide a road map for fun in her family's future, regardless of whether she's around to enjoy it:

• "Teach them to read."

• "Take kids camping across the country."

• "Meet a New York police officer ... in New York."

• "Watch them go to prom."

Life after loss

Ms. Crawford long ago lost track of the number of ultrasounds she has had in the past few years. But this story starts with one. It was 2006. They were pregnant. But a spot on the ultrasound indicated a hole in the baby's diaphragm -- a condition they initially were told had a 50 percent fatality rate.

As the pregnancy progressed, the baby girl's prognosis appeared to be good. But when Shannon Crawford was born in January 2007, she also had a serious heart defect. She died after living three days in Magee-Womens Hospital's neonatal intensive care unit.

"We shoved as many memories as we could into those three days," said Ms. Crawford, a portrait of Shannon hanging above their couch in the living room. The same image is tattooed on Steve Crawford's shoulder.

A year later, they learned that Ms. Crawford was pregnant again, only to miscarry 12 weeks later.

Fully discouraged, they found out just months later that they were expecting again, and this time the surprise on the ultrasound was that they were having twins. Lily and Grace were born six weeks early in August 2008.

For two weeks, Ms. Crawford once again returned to her babies in the NICU at Magee, a place that after Shannon's death seemed scary and grim. The girls came home and thrived after their hospital stay and when Ms. Crawford became pregnant again, she started thinking about ways to make the NICU a better place to visit.

"When you are in there, you are walking into a war zone -- there's just death and disease, sounds and sirens," she said. "You feel so alone."

It started with care packages that she put together and delivered to Children's Hospital, stocked with items like toothpaste and preemie baby clothes.

Project Sweet Peas now has chapters in 20 states, encompassing 30 hospitals, including all three Pittsburgh NICUs. It has a preemie clothing exchange, an "adopt a NICU parent" program and care packages for short- and long-term NICU stays, grieving parents and older siblings. Every Halloween, Ms. Crawford glues together hundreds of costumes -- butterflies, pumpkins, pea pods -- for babies too tiny to fit into anything store-bought.

The Halloween costumes are a huge hit, said Lisa Graper, a nurse at West Penn Hospital who worked until last month as the manager of the NICU. She called Ms. Crawford's efforts extraordinary, noting how much comfort Project Sweet Peas brings to parents in a stressful situation.

"It brings a joy to something that is otherwise very difficult to experience," she said. "The families feel like there's someone who really relates to them."

Ms. Crawford's son Stephen was born seven weeks early in December 2009 -- she hemorrhaged in the middle of the night and required several surgeries. Her son required weeks in the NICU and has had several lasting complications attributed to his early birth.

Prompted by the story of a friend who had been battling breast cancer, Ms. Crawford did a breast self-exam last August. She felt a hard mass, which she thought was probably a clogged milk duct.

Two weeks later, her son was hospitalized and diagnosed with weaknesses in his body and speech issues that required therapy six days per week. Meanwhile, Project Sweet Peas was growing rapidly and Ms. Crawford was busy with her twins as well.

"I let my issues go to the back burner," she said. "I had so much going on."

She didn't visit the doctor until December, when her breast started to hurt and she came down with a cold. She was quickly sent for a mammogram and an ultrasound, and it was clear something was wrong.

"We have had many, many, many ultrasounds," she said. "When you see blackness on the screen, it is not good. That means no light is getting through. I knew right then it was cancer."

Her initial diagnosis of stage II cancer worsened within weeks, when doctors realized the extent that the cancer had spread through her body. Late last month, she learned that the cancer was likely caused by an extremely rare genetic condition called Li-Fraumeni Syndrome, a cell mutation that predisposes children and young adults to cancer.

Her whole family will be tested soon to see whether they also have the condition.

Treatment of metastatic breast cancer has improved dramatically even in just the past few years, said Adam Brufsky, medical director of the Women's Cancer Center at Magee and one of Ms. Crawford's doctors.

"It really has changed -- it's really not the death sentence it used to be," he said, noting that chemotherapy and other drugs can be much more individually targeted. "We know we can't cure it but at least we can better control it for many, many years."

Seizing the day

It's a question that Ms. Crawford and her husband are asked frequently: "How do you walk around with a smile on your face?"

For both of them, the answer goes back to Shannon's death.

At one time, both of them had been firefighters and EMTs. They met while working in security for U.S. Steel. After Shannon died, Mr. Crawford decided to pursue a lifelong goal of becoming a police officer. Life was too short, he thought, to postpone his dreams.

Through his job as a police officer, he meets plenty of people who make the wrong decisions. For him, it's a reminder that life is full of choices.

"People ask, 'I don't know how you're smiling,' " he said. "What's your choice? I deal with people who take their bad experiences and use them as an excuse for the rest of their lives."

Ms. Crawford acknowledges that immediately after her diagnosis, she went back to the dark and depressed place she had been after Shannon's death, wondering what she had done to deserve this. But that didn't last long. She decided to stop trying to figure out the morbid calculus of good deeds and bad luck. She'd love, of course, to be cured of cancer, but now she's just focusing on savoring each day.

"I pray that God grants me a miracle, but again, the odds have never been in my favor," she wrote in a journal that turned into a blog (www.thechroniclesofcancer.blogspot.com). "Remember, I ain't no Katniss Everdeen," the heroine in "The Hunger Games."

Almost immediately after writing her bucket list and putting it on her blog, she was overwhelmed with gifts and donations. She has met Bubba, a popular disc jockey on 100.7-FM, and told her story on the radio. She has been to a Christian concert and has taken her family to a Pirates game. And Belle Vernon High School is participating in the pre-prom parade.

Her son is improving greatly and is down to two therapy sessions a week for his speech. At age 3, he has the expressive language of an 18-month-old.

Today, she'll walk with a group at the Race for the Cure in Oakland for Mother's Day -- a day that has been bittersweet for her since Shannon was born and remains so this year.

"It is always on the back of my mind on special occasions," she said. "What if this is my last Christmas, or the last one where I'm able to do things? What if I'm sick next year? We're going to go down and do the race and not worry about it."

She not only wants to raise money for breast cancer research but to spread the news of her story to people who might find it helpful to get through problems in their own lives.

"I have a good story to share," she said. "We have been through so much stuff as a young family and we're still here. We're OK."

Anya Sostek: asostek@post-gazette.com or 412-263-1308.
First Published May 12, 2013 12:00 am

The Good and Bad sides of Cancer

The past couple weeks have shown me the greatest and worst parts about having cancer. Unfortunately, there is absolutely no in between, no grey, just black and white; it is a real blessing or it is pure hell.

Let's rewind about three weeks ago. I was on top of the world, cancer wasn't getting me down. On top of my weekly chemo's great things started happening. Our story went viral and people kept wanting to give and give to us. For a week straight it was incredible blessing after incredible blessing. But, there's always a downfall, and I was to naive to see. People got mad, for one reason or another, over all of this new found "glory". Everyone wanted a piece of it, and they didn't care how much they hurt me in the process. By the start of the second week, I was broken. Everyone wanted to tell me what to do, but wouldn't allow me to follow that advice. No one was listening to me anymore. Everyone wanted to argue and get mad at me for things beyond my control, no one wanted to actually be there for me. It seemed the world came crashing down around me in an instance. I couldn't believe that on top of having cancer, I was experiencing the absolute worst in people around me as well; it added insult to injury.

I am struggling. How can I be so blessed and be in hell at the same time? I have always been able to rejoice in my sufferings, as it says in Romans 5:3-5, but for all of this good and bad to happening at the same time in literally driving me insane. I hit rock bottom with all of this today. I cannot live in this hell while God is trying to tremendously bless me; and I won't allow anyone to try to keep me in it any longer. If you are a supporter of mine here's little note from me to you.


Dear Yinzers,

Listen up folks, I have a bad kinda cancer . . . like, I am on the "Oh shit, you have that" spectrum of cancer, not the "Oh good, we got this" one. I know this isn't easy. I wouldn't wish what you are going through on anyone, but, are you the one with the cancer? No, you're not. So guess what, you have to suck it up when you are around me. Treat me like me, plain old me, but do me a favor, also handle me with care. Maybe I should get a sticker for that? If I want to stay busy, let me stay busy. If I need someone to tell me what to do, I'll talk to my doctor. If you are neither my doctor or my mother, keep it to yourself. I don't care what you think about my cancer, or who you know that had cancer, let's get this straight: I WILL DIE AS A RESULT OF THIS CANCER LONG BEFORE I SHOULD. Let's remember that. Let's also remember this is MY CANCER, not yours. Contrary to popular belief, you are NOT the center of my universe right now. I will not respond to every message, text or call you make to me. While I greatly appreciate each one, I am finding it impossible to properly juggle my life right now. While I was once an excellent juggling circus act, I am more like the bearded lady side show freak now and you MUST get used to the "new me". You can't judge my cancer or how I handle it. That's why it's mine, and not yours. If you want to judge, get some cancer and then we'll talk. Oh, you don't want cancer? Yeah, neither do I.
Don't ruin things for me, hell, lie to me about how you feel if you think it will piss me off or bring me down. Talk to me more gently, word things differently. I am not saying to treat me as a child, but I am like a 80 year old pregnant woman right now: I ache, I am sore, I am tired, I am worn, I am self conscious, I am moody, I am hormonal and I am unsure. Think about how you would treat an old lady or a pregnant woman, and that's how to handle me. Go out of your way to make things special for me, I'm just sayin' but I'd probably like that. We don't know when my "lasts" will be, so why don't we act as if they all are? If I ask you to do something, suck it up and do it, chances are, knowing me, I never ask you for anything anyway so one thing will not kill you. I have always been the independent  strong, silent type, but now being surrounded by my family and friends means a lot to me, understand that very quickly. If you can't try or won't try to do any of this YOU will be the one with regret at the end of this journey, not me.

Kind Regards,
The One with Cancer