Friday, January 18, 2013

Husband Fights Cancer Alongside Wife

                                                       By Cameron Von St-James
My Experience in Fighting Cancer Alongside My Wife

Three months prior to my wife Heather’s diagnosis of malignant pleural mesothelioma, we had just celebrated the birth of our lovely daughter, Lily.  When Heather began feeling ill on a regular basis, we took her to be examined by a doctor.  After countless exams and tests, I was suddenly catapulted into being a caregiver for a cancer patient – certainly something I had no experience at.  Our lives seemed to be turned upside down nearly overnight and everything seemed frantic and chaotic.

When we met with Heather’s doctor, he filled us in on treatment options for Heather.  We could go to a local medical center that was reputable but had little experience in treating mesothelioma, or we could go to a local university hospital.  Our third option was to take Heather to Boston to see Dr. David Sugarbaker, a specialist in the treatment of mesothelioma.  We chose to go to Boston due to Dr. Sugarbaker’s extensive experience in treating patients who had diagnoses similar to Heather’s.

Over the next two months, our lives were hectic and seemingly very up in the air.  I was still trying to adjust to being a caregiver for Heather while also trying to keep my job so we could pay the bills.  Heather went through surgery, radiation treatments and chemotherapy treatments as time progressed.  There were many times when it was unclear whether she would survive the cancer or not.  A few times, I completely gave into anxiety, fear and exhaustion and I sank to the kitchen floor and cried.  I was always careful to never let my wife see me in my weakest moments.  

I worked hard to be the best caregiver, husband and father I could be.  Still, there was just not enough of me to go around.  Thankfully, many people from our community came together to support us – in every way from financial support to offering to bring meals and offering to babysit Lily.  Their help was invaluable, and I will be forever grateful to each and every person who extended us a helping hand in our time of need.

It has been seven years since Heather first received her mesothelioma diagnosis.  Miraculously, she has beat the disease and is now in the process of returning back to normal life.  I went on to go back to school and I even spoke at my class graduation.  I know the strength and courage I had to muster during Heather’s illness gave me more resolve and more conviction that I can accomplish difficult things in my life.  Heather and Lily were there to cheer me on as I spoke at my college graduation, and that was the greatest reward of all.


Tuesday, January 15, 2013

What’s “normal” about living with cancer?

The first few months of cancer treatment are a time of change. But when you’re living with cancer that doesn’t go away you may feel like you’re stuck in this change—you don’t know what to expect or what’s going to happen next.

Living with cancer is not so much about “getting back to normal” as it is learning what’s normal for you now. People often say that life has new meaning or that they look at things differently now. Every day takes on new meaning.
Your new “normal” may include making changes in the way you eat, the things you do, and your sources of support. It may mean fitting cancer treatments into your work and vacation schedule. It will mean making treatment part of your everyday life—treatments that you may be getting for the rest of your life.

“Cancer is just part of my life now, and I always try to have hope.”
-Marisol, living with ovarian cancer

Repeated recurrences, often with shorter time periods in between remissions, can become discouraging and exhausting. It can be even more discouraging if the cancer never goes away at all. The question of whether to keep treating cancer that doesn’t go away or comes back again and again is a valid one. Your choices about continuing treatment are personal and based on your needs, wishes, and abilities. There is no right or wrong decision on how to handle this phase of the illness.

Still, it’s important to know that even those who are not cured of cancer may go on living for months or years, even though there may be changes in their lives. Many families adjust to this kind of treatment schedule.

Having a cancer that cannot be cured does not put you beyond hope or help; you may be living with a disease that can be treated and controlled for a fairly long time. (article from American Cancer Society)
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Saturday, January 12, 2013

"I know there were people in this group who surprised themselves. They didn't think they could do it."
Prostate cancer survivor Gail Endres, 65, says it’s amazing what people can do when they set their mind to it. He witnessed this firsthand as a group of cancer survivors and caregivers reached the 19,000-foot summit of Mount Kilimanjaro in Tanzania, Africa. For some, it was a real struggle.
“I know there were people in this group who surprised themselves,” said Endres. “They didn’t think they could do it.”

The trip was the “birth of a dream” of Richard Deming, MD, medical director of Mercy Cancer Center in Des Moines, Iowa and American Cancer Society volunteer. He had an epiphany during a trip to Mount Everest 10 years ago, and came back with the spark of an idea to use the physical challenge of mountain climbing to help cancer survivors and others explore how adversity can enhance their lives and give them a greater appreciation for life and each other.

Deming and adventurer Charlie Wittmack eventually founded the nonprofit organization, Above and Beyond Cancer. The group offers adventures to inspire cancer survivors and raises money to fight the disease.

A message from the doctor

Endres’ cancer journey began in 2002 when he was 56 years old. He underwent a physical exam as part of his preparation for a bicycle touring event he had taken part in every year for 27 years. In 2002 when he returned home after the 7-day ride, a message from his doctor was waiting.

The doctor told Endres that a screening test showed an elevated level of prostate-specific antigen (PSA) in his blood and she wanted to repeat the test. The new test showed the same result, and Endres next went to a urologist who performed a core needle biopsy. The doctor removed a small amount of tissue from the prostate, which was found to contain cancer. Endres said the news was devastating.

Endres spent an anxious few weeks deciding what to do about his prostate cancer. He conferred with his oldest daughter, a doctor, and together, they chose surgery.

He said, “I wanted them to get it all.”

After his surgery, Endres continued to have regular PSA tests, and his level continued to rise gradually. In 2006, he met Deming, who prescribed radiation therapy. Five evenings a week after his shift at the John Deere company, Endres had radiation treatments – 39 in all.

‘Inspiring and fascinating’

Afterward, Endres continued to see Deming, but not at the hospital. He took classes at the Healthy Living Center, which is a partnership between the local YMCA and Mercy Medical Center. Classes for cancer survivors include movement, yoga, a lecture series, and a spin class (using stationary bicycles) taught by Deming.

Deming spoke to the survivor group and laid out his plan to take cancer survivors and caregivers on a trip to the base camp of Mount Everest. The idea was to take on a physical challenge that would lead to personal growth and a renewed commitment to fighting cancer. Endres had recently retired from his job. Though he had traveled all over the US, he had never been out of the country, and didn’t even have a passport.

He said, “I’ve always been fascinated with Everest, but I didn’t know someone that was doing something like that. Deming came and spoke, and it was inspiring and fascinating and perfect timing in my retirement and wanting to do something like that.”

In April 2011, 14 cancer survivors and 14 caregivers went on the 3-week trip to the base camp of Mount Everest in Nepal. Endres called it a very emotional trip. He described the snow and mountains as incredibly beautiful, and the people who live there as content and happy. “It’s amazing to see, compared to the way we live, things we have, we’re so spoiled. There they were with so few things and perfectly content.”

While there, the group held a Relay For Life event, the highest altitude Relay ever. That record would stand for just 9 months.

Mount Kilimanjaro

After a few months of telling the story of the Everest trip, Deming realized there was a demand for more adventure opportunities for cancer survivors. For this second trip he chose Mount Kilimanjaro. Once again, Endres signed up.

He was among a group of 41, 21 of them cancer survivors. Also on the trip were 2 American Cancer Society staff members, who were there to support the trip and the survivors. Gail Richman, American Cancer Society’s managing director of business practices, said she didn’t hesitate when offered the chance to go. She said the trip was about physical exertion, but also about spirit, and “digging in deep.”

Richman said, “It was a very spiritual trip in a lot of ways. Dick Deming was always reminding people of the bigger picture; it was not just about climbing Mount Kilimanjaro.”

Hope - Copyright John RichardsEndres said the Kilimanjaro trip, in January 2012, was more grueling than the trip to Everest. The team stayed in tents, not lodges, and trekked up narrower and steeper paths. During the last few days, as they struggled up over the lip of the mountain, they often took a step, only to slide back. Endres said team members supported and encouraged each other, sometimes gracefully and other times a little more seriously: “Don’t say you can’t make it! I know you can do this!”

The group camped for the night in the crater at 19,000 feet. They lit paper luminaries to spell out “hope” in the snow. As the sun set and pinks and purples reflected off the ice, they formed a huddle and one of the cancer survivors, a Catholic priest, led them in prayer.

Prayer flags are part of the culture in that region, and the hikers brought with them 800 flags stitched by a volunteer back in Iowa and decorated with photographs, drawings, and sentiments honoring the lives of people who battled cancer. They strung up the flags and circled the word “hope” as they set the new altitude record for an American Cancer Society Relay For Life.

Before climbing back down the mountain, each team member vowed to do what he or she could to fight cancer and save lives.

Benefits of physical activity

Today, Endres says he’s in the best shape of his life and feels strong.

He said, “Being a senior citizen, I hope to inspire people from my generation to get physically active. The US is in crisis with obesity and healthy living. I want to encourage people to do something more active. There is a lack of wanting to watch diet and exercise in our country.”

Deming said Endres was a valuable member of the team. “Gail is just a gentle, quiet, strong person whose presence on the trip added to the serenity for all those who participated. He’s just a gem.”

Friday, January 11, 2013

"Scars may heal, blood counts may normalize, years may pass. But never again will the simple act of waking up to a normal, boring day as a healthy individual be taken for granted, nor go unappreciated." - Allison A., Cairo, Egypt
Surviving cancer is a different experience for everyone. But one thing most survivors say is that their life after the cancer is not the same. Cancer survivors from all walks of life responded to a New York Times request to send in a photo and answer the question, "How is your life different after cancer?" The responses make up a powerful new book from The Times and the American Cancer Society titled Picture Your Life After Cancer, edited by Karen Barrow, web producer for the science desk of The New York Times. This book includes more than 200 stories of cancer survivors.(from American Cancer Society)
Male Breast Cancer Survivor Is Former Caregiver
Kevin Baldwin knows a breast lump when he feels it. His wife, Arlene, passed away from breast cancer nearly 14 years ago on the eve of their youngest child’s first birthday. So when Baldwin slid a bar of soap across his left breast in the shower and felt something the size of a ping-pong ball, there was no second-guessing. “Unlike most men, I immediately thought breast cancer. I thought, ‘Here we go, let’s get to the doctor,’” says Baldwin, 50, of Lamar, Missouri.
The diagnosis arrived within days: stage 3 breast cancer. Chemotherapy followed a radical mastectomy that removed the tumor along with his entire breast, underarm lymph nodes and pectoral muscles under the breast. Baldwin, a school superintendent in Golden City, is now taking the anti-estrogen drug tamoxifen for 5 years to reduce the risk of his cancer coming back.
Yet Baldwin wasn’t thinking about his own health when his doctor uttered the word malignant in early 2012. His mind instead immediately veered to his 14-year-old daughter, Madie. Since both her parents now had had breast cancer, what chance did his only girl possibly have of a ducking a similar fate?
“You immediately think women. But as I’ve learned, even though breast cancer in men is not common, it is possible. So I’ve also talked about it to my two sons,” says Baldwin, whose only family history of breast cancer includes an aunt.
Baldwin’s sons are both in their 20s. His conversations with them aimed to strip away any embarrassment or stigma surrounding breast cancer in men, a message Baldwin also relays to other men he meets in the community. “We don’t get to choose where cancer shows up in our body. We need to find it as early as possible and fight it as best we can,” Baldwin says.
His awareness efforts also take a second angle: Even though you may never get breast cancer, your wife, mother, sister or daughter might—and knowing what to say and do for them counts. Baldwin says it wasn’t until his own diagnosis that he realized how he could have been a better caregiver for his wife. “Today, I know there are things she went through mentally, things like body image and fears about mortality, that I had no idea she was going through until I experienced breast cancer myself. And I’m going to make sure men understand it.”
Soon after his diagnosis, Baldwin says he went through a phase in which he often wondered, “If I die tomorrow, do I have everything in order?” It’s a conversation most cancer patients have with themselves at some point. Yet Baldwin says he didn’t dwell on those thoughts long. “You think, ‘This is stupid. Why am I doing this?’ Then the fight is on. You try to be as positive as you can and move forward with your life.”
Sometimes that means moving forward quite literally. Every year, Baldwin participates in the American Cancer Society’s Relay For Life. More than 3.5 million cancer survivors and supporters nationwide band together each year for Relays in which “teammates” take turns walking or running around a track or path overnight to raise cancer awareness and research funds. Baldwin hasn’t missed a Relay since his wife’s death in 1999, but his latest one in July took on new significance and emotion.
“For the first time, I actually walked as a survivor instead of as a supporter,” Baldwin says. “That was quite an experience. (Article from American Cancer Society)