Since joining the Life Raft Group in January 2007, Janeen Ryan, caregiver to her husband, Larry, has acted as a jester, a confidante and a supportive shoulder to many in the LRG email community. Usually a ray of sunshine(but occasionally a bolt of lightning), Janeen is equally at home making suggestions about speaking with your doctor or inventing new written ways to express frustration with a medical blunder. In each post, she signs off with a snippet from her daily life. Signed once as Janeen Ryan, “Wife of Larry (I can’t fish in the rain!) Ryan”, another as “Wife of Larry (whipped cream on my cocoa please) Ryan”, each time Janeen leaves us with a snapshot of a life untouched by cancer. A life she and Larry have created for themselves despite all the odds.
When Janeen walked into Larry Ryan’s office for an interview at sundown, with her bright red hair, he thought it was a “bright, glowing angel” standing in the doorway. “He kicked the guy who was with him out of the office. He didn’t even know why I was there!” says Janeen. The pair spent the next two and a half hours talking about life, kids, hobbies and love—everything but a job. Larry had four kids, Janeen had two.
It didn’t take long for the couple to fall in love and get married. But the beginning was difficult for both sides. Larry had been married to his late wife, Eileen, for almost 25 years before she died of cancer. The children harbored resentments toward their father for remarrying, which put a strain on the relationship. But then Larry got sick.
He had had a lot of back pain over the years. Doctors had mostly attributed it to arthritis or “getting old”. One particular day in December 2006, Larry was bent over in pain and Janeen knew something was wrong. That day, Larry was admitted to the hospital and a CT scan was taken.
The next morning a group of doctors stood in Larry’s room and said they were operating the next day; they thought it was diverticulitis. Another doctor interrupted and demanded to speak to the others, “I just thought, ‘Oh, they have the CT results,’” remembers Janeen. Her intuition had been right, a mass the size of an orange was attached to the duodenum, and there were metastases throughout his GI tract. During surgery, Larry’s tumor burst, flooding his abdomen. Despite the setback, they cleaned out the fluid and biopsied the tumor.
“A few days later, they said it was GIST and he had three months to live.”
Thankfully, this was just another assumption that Larry overcame. He was put on Gleevec, which worked for 18 months. After experiencing progression, he upped his dosage. Eventually, at the suggestion of Dr. Mike Heinrich at Oregon Health & Science University, following a mutational test that revealed an exon 9 mutation, Larry was switched to Sutent in September 2008. Despite dosage issues, Larry has been stable since.
“In the beginning, [Larry] thought he was dying. He didn’t want to talk to other sick people or do anything. But when his tumors started to shrink, hope was alive again. Now he’s taken up hobbies like fishing and target practice.”
His illness has also brought the family back together, “There was a lot of healing. It has actually been the happiest two and a half years of our marriage. Nothing else matters but being together and forging forward.”
Larry’s & Janeen’s children started to come over often and chip in with mundane chores like mowing the lawn, slowly bridging the gap between family members. This also helped Janeen considerably since Larry’s illness had begun to take a toll on her health.
“When he first got sick, I didn’t leave him for 63 days straight; I set up a baby monitor in the bedroom to listen to every breath he took.”
Janeen began having thyroid problems and was forced to call Larry’s daughter to stay with him while she went to a doctor’s appointment. Because of this she began to ask for more help and has learned a lot from the experience,
“When somebody offers help, take it! Don’t be shy about saying, ‘Can you stop at the grocery store for me or the mailbox?’ You have got to take care of yourself!”
At one point, Janeen sought counseling, though not for the reasons one would think. Janeen was involved in an armed robbery at a credit union, which acted as a catalyst for her to seek professional help. Those sessions helped her open up about her emotional burdens as a caregiver. “For the first appointment we talked about the robbery, and then we never talked about it again.”
Janeen also found genuine support in an unexpected place. Several years ago, she found a chat room online about finance and investing which ended up becoming a kind of second family when she was in crisis.
In that virtual place, Janeen was able to share in a way she had not been able to before. “We talk about everything. On the internet you can open up your innermost thoughts and feelings. You can tell them, ‘I just want to hit something!’ and they talk to you and tell you it’s okay to feel this way and you don’t have to be the ‘iron maiden’ all the time.”
At one point Janeen actually got on a plane to San Francisco and joined all of her friends for a face-to-face meet-up. “We ended up staying for three days and had a blast.”
Of course, there were other places that she found solace. Janeen takes great comfort in her gardening and now boasts an organic vegetable garden complete with tomatoes, onions, beets, leeks, cabbage, lettuce, broccoli, brussel sprouts and various herbs. This has also brought surprising benefit to Larry who has lost much of his taste, “Even with Sutent, where he can’t taste chicken, he can taste broccoli out of our garden.”
Janeen loves to feel connected to the earth, so when she was in need of extra money, she thought of an old hobby of hers: creating jewelry out of completely natural substances like crystal and glass made from sand.
“I thought to myself, ‘Now what do I know how to do?’”.
Janeen made a few bracelets here and there, which she sold at work and pretty soon, a following emerged. “One friend said that I should sell my jewelry on the internet, but I didn’t know what to do.”
Fortunately, Janeen was told of a website, Etsy.com, which sells handmade items, and even got some photography pointers from one of her chat room friends. Business has been doing well; she will soon begin having jewelry parties and is having business cards made up.
It is Janeen’s dream to one day give up her job as an auto broker and make a living by selling jewelry, so that she can spend all of her time with her husband.
But the recent economy has prevented that dream for now, “The auto industry has been hit really hard. I can’t do that yet.”
Because of this situation, the Ryans were recently unable to keep up their car payments. But as usual, they were blessed with great people around them to offer help where needed. A friend took the car and continued the payments, and Larry’s son dropped by with a replacement. “Now Larry can have independence and go to the lake by himself.”
Throughout their battle with GIST and indeed their entire marriage, Janeen has kept one thing in her heart that she keeps reminding herself, “Don’t pretend that everything’s okay, everything’s not okay, everything’s changed. It’s okay to cry and feel weak. It doesn’t mean you are weak; it just means you’re having a bad day.”
Janeen holds on to those good days, when she sells a lot of jewelry or gets a car from her son-in-law, and lets them carry her through the rougher ones. She knows she is blessed and doesn’t take any moment for granted.
“We have more good days then bad. And there was a point when we thought that would never come”
Click here to check out Janeen’s jewelry collection.