kidney cancer Archives - Cancer Hope Network

Unstoppable Susan

Brandon Pantano — Fri, 28 Jun 2019 14:32:33 +0000

Susan Moir was diagnosed with kidney cancer in 2002. For nearly two decades, the “unwelcome guest” of cancer has been her companion. Thanks to metastases that moved to her brain and pancreas, she’s had a laundry list of conventional treatments – a craniotomy, gamma knife surgery, immunotherapy, a nephrectomy and more. She’s developed a grim expertise in the art of watchful waiting. Along the way, she’s also become a reiki teacher, explored complimentary therapies and, most importantly, inspired hope for cancer patients across the country.
“I think it’s helpful to know that there is the possibility of longevity when you have active disease,” she says. “When you go into any kind of cancer treatment, you’re hoping, praying, wishing for a cure. But for a percentage of us, cancer’s there always, surprising us.”
It may be “there always,” but she refuses to let cancer dictate her life. Her latest rounds of treatment, including another brain surgery, have changed her health permanently. But she’s determined to enjoy the moments she can. “You can really start limiting your life. I live a really normal life,” she says. “I have to manipulate things around my scans or treatments, but my husband and I still travel.”
After the radical surgery of a nephrectomy, she enjoyed five “magic” years of good health. “Radical surgery saved my life.” Then, the sudden 4am headaches led to treatments for allergies that wouldn’t go away. Tests and scans revealed metastases. Susan’s brain surgery was scheduled for Christmas Eve. She said goodbye to her family unsure if she’d wake up. “But a few days later, I was okay, ready to head home. It took me a while to fully recover, but brain surgery is not as difficult as abdominal surgery. Brain surgery was a breeze,” she remembers wryly.
But cancer was undeniably on the move. “There were no ‘good’ options and nothing I felt comfortable doing,” she recalls. She was soon on the road with her supportive husband, headed to Mexico City to visit the basilica of Our Lady of Guadalupe and pray for a miracle. But the miracle didn’t materialize. She returned home and scans discovered another tumor.
Through each victory and setback, Susan has focused on what works best for her – mentally and physically.
“Practicing and teaching reiki changed my life.” As life with cancer progressed, Susan trained as a CHN Support Volunteer and began serving as a volunteer at the local cancer center. (CHN partner St. Charles Cancer Center in Bend, OR) “At first, I simply practiced on myself for my own health and well-being. Then I began to give my energy and focus to others.”
A practice of mindfulness had always been part of her life. Now, she researched, read and began taking mind-body classes. She worked with an herbalist and began cannabis treatment. “I was fortunate that I have a primary doctor who is an MD, and is also involved in Eastern medicine and complimentary medicines. He considers cancer a chronic disease.” That practice and those beliefs gave her extra confidence to follow his more traditional treatment recommendations.
That comfort also helped the self-declared conflict avoider to stand strong when working with her medical team to determine what would work in her particular situation. When faced with her first brain cancer, they decided to avoid whole-brain radiation (at that time the gold standard). It was a decision that was backed by science and made her comfortable.
“Always listen. Find options. The answers are never worse than what we imagine. I’m continually questioning what to do next. Sometimes simple is best. Don’t panic and grasp at whatever is suggested. And when you do decide, be sure it’s what you believe in.”
“If you have the resources, the time, work with your doctor and do complimentary therapies that look good and are available to you. They’re likely to make you feel better. They might not cure you, they might not even make your symptoms go away, but you’ll feel better. And when you feel better, you heal better.”
While she’s found benefit in therapies that compliment her treatment plan, she still advocates caution. “It’s good to slow down instead of just trying to do everything that might work. You get a lot of advice. That slowing down, the waiting, is really important. It’s really helpful to get a better understanding of the process, what’s helpful and what’s not. Take the time to understand what you need.”
Her daughter is now a gynecologic oncologist. “My child has taken this as her life’s work because of me.” Preya credits her mother with helping her develop new understanding and empathy when working with patients.
Susan is a fierce advocate for finding support and taking advantage of services like support groups and a cancer therapist. “The whole system is bulky and awkward,” she says. “It’s so hard to navigate. Most of us, at least at the beginning, are just thrown into this world that is pretty foreign to us.”
She encourages her matches to embrace help where they find it. “Support and friendships will arrive when you least expect it.”
Susan is positive, upbeat. But she’s also realistic about the challenges of cancer. “I’ve had as many rotten moments as possible. But there again, I’ve found the support of family and other cancer patients. After my brain mets, when I was really frightened and trying to decide what to do, I met two new friends. Their whole purpose was to make me laugh all the time. That was a really wonderful gift, totally unexpected. That came from seeking ways to make myself healthier and being open to what arrived.”
Like many patients, accepting help was difficult at first. But she encourages them to try. “As hard as it is, accept what is offered. It’s hard for patients to know what they want, but your loved ones have a real desire to help.”
For those loved ones, she also shares advice. “Make me laugh about something that has nothing to do with cancer. Cancer takes over your life enough as it is. It’s not that I don’t want to share, but sometimes, I just want to talk about what to make for dinner. “
Through it all, she retains perspective. “Today is a good day. That’s all I’ve got. I try to take it in.”

The post Unstoppable Susan appeared first on Cancer Hope Network.

Five lessons from a two-time cancer survivor

Brandon Pantano — Wed, 27 Feb 2019 16:50:51 +0000

Dale Smith has become a bit of an expert when cancer comes calling. He’s not doing research or prescribing medication, but he IS empowering friends, family and CHN clients to take charge of their care, to have an active voice in their cancer journey.

He’s built that expertise through years fighting cancer – his own and that of several loved ones. “I had my first surprise cancer in 1994. When that was all treated and dealt with, there was a sense that five years out from testicular cancer, you’re cured. Thankfully, because I was having follow up CT scans every three years, they found my kidney cancer in 2010.

Having faced cancer twice, Dale knows the fear of “scanziety” too well. But he’s a staunch advocate of the follow-up testing that saved his life when cancer returned. “I have to go get this, drink this drink, take this test. You have to grit your teeth because it’s better to know than not.”

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Today, Dale is in good health. He’s active in his church and community. He’s playing golf. His outlook is realistic but filled with hope. “I’ve had cancer twice. I can ask myself when the third one will come. Or I can believe that I will die from something else many years down the road. I choose to be in the latter camp. Life goes on. I keep going.”

Here, Dale’s five tips for cancer patients and the people who love them:

Get connected to trustworthy resources – “When you’re newly diagnosed, it’s like ‘OMG!’ It’s happening to you for the first time. But you’re not the first. There are thousands of others who have gone down this journey before. Reach out.”
The resources available online have come a long way since Dale’s first diagnosis in 1994. But that has its own pitfalls. “People these days when they’re diagnosed with cancer, they get on the internet and get scared shitless,” he said bluntly. “That’s a bad thing. But if, in that search, you can get connected to reputable places like Cancer Hope Network, American Cancer Society or the Cancer Support Community, they can connect you and give you guidance. Don’t get scared by what you see on the internet; use it as information when you talk with your doctor.”
Trust your team – When Dale received his diagnosis, he and his wife were planning a move to England. After a brief delay, they soldiered through the move, eventually landing at Royal Marsden Hospital in London for the chemo protocol. Luckily for him, his oncologist at RMH was “on a first name basis” with his Memorial Sloan Kettering oncologist.“There is this network of medical professionals who really do know what they’re doing. You want any newly diagnosed person to get connected to that.”His advice to patients echoes that of so many others who’ve travelled this road. “Always get a second opinion. Or the equivalent.” For Dale’s second diagnosis, he was referred to a kidney surgeon who had been on his original surgery team in 1994. It also meant finding someone who was willing to explain the rationale behind decisions.He encourages patients to be “fully aware of pros/cons and the options that are available. Be engaged with the treatment plan, knowing that things might change as you go forward.” Even with a team you trust, “You’ll have questions. But don’t be afraid to ask the questions.”
Manage communication – Cancer is overwhelming. Adding check-in from concerned friends and family to an already full calendar of tests, treatment and recovery can be, as they say, “a lot.” That’s where Dale recommends an online service like caringbridge.org. The (free) service lets users share updates widely, minimizing the need for repetition. And it’s a small way to exert control in the out-of-control world of cancer.“Caring Bridge can be a real help to the newly diagnosed person and their caregiver,” he advises. “There’s all these people who want to know what’s happening. You can control your story, what it is you want to say.
Care for your caregiver – Dale’s first diagnosis came shortly after he married his wife Elaine, “The loveliest person in the whole world.” He shares the lessons he learned as they worked through his treatments with patients today.“As patients, we need to recognize that our caregiver has doubts and fears that they don’t want to discuss with us. Encourage your caregiver to also rely on other people. That support is another advantage Cancer Hope and Cancer Support Community offer.”
(And, for friends and family) Just be there – When your loved one is diagnosed with cancer, it’s all too easy to wait for “the right time” or hope to find the “right words.” But that waiting can soon slip from days into weeks or longer. A startling number of patients (like volunteers Joe and Kelly) recall the pain not of treatment, but of lost or silent friends.Dale’s advice is simple. “Yes, your friend is in the hospital, your friend is getting these strange treatments you know nothing about, but show up.” Showing up doesn’t mean offering false hope. “You don’t need to say ‘I’m sure it’s gonna be ok,’” he cautions. “You don’t know that.” Just be there. Perfect words aren’t necessary. “Having people show up to visit was so meaningful,” he recalls. “When I was in MSK – just having people visiting to show they cared, keeping the conversation as normal as possible, was really helpful.”

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