Shortly after Brian Bowe made public a personal blog documenting
his decade-long battle against a rare form of cancer, his wife
Kathy brought his attention to an instant tidal wave of support.
Bowe was diagnosed with carcinoid cancer in 2005, but his decision
to compose and share a blog/donation site years after the fact
underscores a clear intent to keep his personal life separate from
work. Full article
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Shortly after Brian Bowe made public a personal blog documenting his decade-long battle against a rare form of cancer, his wife Kathy brought his attention to a prompt outpour of support.
“Honey, you have gone viral. I think that’s the term,” she wrote to her husband in a text.
“God knows what she sees in me,” joked the executive director of the Gilroy Garlic Festival Association of five years, reading the message out loud Friday morning inside his downtown office.
Bowe was diagnosed with carcinoid cancer in 2005, but his decision to compose and share a blog/donation site years after the fact – seven days ago, to be exact – underscores a clear intent to keep his personal life separate from work.
“I’m as passionate about the garlic festival as I am about cancer and my health. And I don’t want either one of those to overshadow the other,” he said.
Bowe will depart Aug. 14 to Houston to undergo the first of four treatments through Aug. 24. The drug costs $15,000 each time it’s administered, is not approved by the Food and Drug Administration and is not covered by insurance. Factor in hotel, airfare, rental car and meals, and the couple is looking at $75,000 out of pocket.
“Kathy and I just don’t have that kind of money, so we’re asking for your help,” he writes in his blog, though he reiterated Friday he does not want his medical condition “to be a headline that eclipses anything festival-related. The festival is so important and does so much for the community. No one person is more important than that.”
The Garlic Festival Association knew about his condition prior to hiring him, Bowe said. It’s by no means an intentional secret; he hasn’t gone out of his way to broadcast it.
Bowe added he’s never wanted the scenario to become, “The Garlic Festival Executive Director has cancer, so now you should read about this and pay attention.”
In a straightforward and honest account of all he’s been through since experiencing unusual discomfort in 2000 and 2001, Bowe’s blog – initially shared with about 70 people a couple days ago – illuminates his ordeals with carcinoid cancer and what the next phases of treatment will encompass. He and Kathy are approaching a crucial crossroads in the battle, Bowe explained, which prompted them to create an informative website directly linked to a nonprofit agency called The Lois Merrill Foundation. The organization is assisting the couple with burdensome medical expenses, and the link on Bowe’s website allows donors to give tax-deductible donations to help fund his medical bills.
There is no cure for carcinoid cancer. Rather, Bowe said it’s something that must be managed to extend his years of quality of life.
Despite tedious trips made to Los Angeles every three months where he spends an entire weekend centered around blood work, MRI’s and CT scans, Bowe said he can endure the discomfort and is grateful for the care he’s receiving.
“I just shut out the pain,” he said. “I don’t focus on it.”
He’s networked extensively with other carcinoid cancer patients, but said forming new relationships under such circumstances is trying.
“He passed away several months ago,” said Bowe, recalling another man he met in a support group who had seen the same doctors and undergone the same therapies. “It’s brutal.”
Bowe praised his wife of almost 12 years; a woman who “gives ‘caretaker’ a whole new meaning.”
“As much as I try to compartmentalize this and keep it in a box so that I can go about my daily life, she’s the one that forces me out of that box,” he said.
Bowe reiterated a determination to not “cross swords between the festival and carcinoid,” and continuously strives never to use his illness “as a crutch or an excuse, or to allow a carcinoid to define who I am.”
Living with carcinoid cancer
By the time Bowe became the festival association’s leader in February, 2006, he had already experienced bouts of symptoms, terrible episodes of intense stomach pains, multiple trips to physicians and “a gamut of blood tests,” which failed to highlight any health irregularities.
It wasn’t until a visit to an endocrinologist that a test revealed what the problem was.
“I’ll never forget the phone call. It was July 6, 2005,” he writes in his blog. “It was the day I learned I had cancer.”
Bowe recalls the first thing he did was look up his disease online. He immediately discovered there are “about two cases in every 100,000 people,” and life expectancy is “about a 30 percent rate of survival five years after diagnosis with distant metastasis.”
Following this news came a liver biopsy, endoscopy, colonoscopy, CT scans and other procedures. Bowe recalls it was “very sobering” to see an image of his liver 40 percent full of cancer. He’s been told carcinoid is a relatively slow-growing cancer, but “believe me, that’s little consolation,” he writes.
Specialists told Bowe he probably had a tumor in his gut for a number of years, which eventually metastasized to his liver causing symptoms and warning signs.
Since April 2009, Bowe has undergone a number of surgeries to remove his gall bladder, some lymph nodes, cancerous tissues from his abdomen and a tumor which had grown to encircle his small intestine “like a rubber band.”
As recent scans show development of new tumors along his diaphragm, between the liver and right lung, his next chapter of combating the disease takes place at Excel Diagnostics in Houston.
Once there, he’ll receive the first round of peptide receptor radionuclide therapy, a drug he explains “travels through your body seeking out tumors and binding them.”
Bowe said the treatment is delivered four times, six to nine weeks apart and is only available in one place in the United States.
He lauded the Lois Merrill Foundation, a nonprofit founded in 2007 to aid carcinoid cancer victims, that is working with Bowe and his wife to help cover expenses. The foundation is accepting full tax-deductible donations on Bowe’s behalf, with 100 percent of donated funds going toward his medical bills and expenses associated with his treatment. Bowe says several of his friends and family members have offered to coordinate local fundraisers, and he will be posting information pertaining to possible upcoming events on his blog.
To read Blowe’s blog or donate to the Lois Merrill Foundation, visit: web.me.com/brianbowe