Rob Jones lost his wife in 2013, six years after she was diagnosed with breast cancer. Colleen Jones was 53. She told her husband she wasn't afraid to die but didn't want to leave their loved ones behind.
Beverly Jasinski was diagnosed with breast cancer nearly four years ago, seven months after her husband died from colon cancer.
Marcia Heaney has survived more than 16 years after she was diagnosed with triple negative breast cancer, one of the most virulent kinds.
"When you face cancer, surround yourself with positive people," Heaney said. "You don't want somebody that's a doom-and-gloomer."
Heaney, Jasinski and Jones make up part of the positive force that is the Breast Cancer Network of Western New York, a nonprofit group that started in 1988 by holding support groups in churches and homes. It moved seven years ago into a leased, 3,600-square-foot storefront at the Bella Moglie Building, 3297 Walden Ave., Depew, a space built by a local contractor after his wife was diagnosed with breast cancer.
Heaney, 74, of East Amherst, a retired dental educator, is a former president of the organization and chairs its advocacy committee. Jasinski, 64, a retired Verizon computer technician, is current president. Jones, 63, a retired manager of a downtown trucking parts and services company, volunteered his services as executive director for three years before the board voted several weeks ago to start paying him a modest salary.
The Breast Cancer Network today hosts support groups, fitness classes and wellness programs – all for $30 a year. The first year is free.
Jones helped secure a $133,000 state Health Department grant to present a series of free breast cancer-related community educational seminars during the next five years. The first will take place at the network headquarters at 6:30 p.m. Thursday, when Jennifer Jennings, owner of Cardea Health Integrative Medicine in Cheektowaga, will be speak. Register by calling 706-0060 or at bcnwny.org.
The network has about 50 active volunteers and 350 members.
Q. Can you talk about the totes you provide to those who are newly diagnosed?
Jones: We try to get word to anybody who's been recently diagnosed that these totes are available for free. There's about $80 worth of product in them. We are supported in this endeavor by Windsong Radiology. We assemble them here. There's a comfort pillow, pink stuffed bear, dog, and footies. There are books, tissues. There's a chemo CD and we are in the process of sourcing a meditation CD. There's a packet of information about us and other resources. (Recent books have included Susan Love's "Breast Book," "Chicken Soup for the Soul: Hope and healing for your breast cancer Journey," and "Tools and Tips from the Trenches".)
Heaney: There's also a book for a journal; it tells them how to journal. If you don't journal, you can keep it for your appointments. We also put in a little note card with a phone number or email if they want to speak with us.
Jones: Here's the disturbing thing about this. New York State says that in Erie County, there's 877 new cases of breast cancer every year. If you take all the counties in Western New York, it's about 1,400. We're only giving out about 200 of these totes. We want to get these totes into more people's hands.
Q . What's the message the totes send?
Jasinski: There are tools to help you through your journey – and we're there as well.
Q. Talk about the programs.
Jones: We do seven support groups that meet two or three times a month. One of the groups is specific to women living with metastatic disease. Another one is for young survivors, 40 and under.
There are three general, peer-led support groups that meet once a month. We also have restorative health classes. We do two yoga classes a week. There's a tai chi class, a Qigong class, a general exercise class, a wellness class. We also do art therapy class and a book club.
Jasinski: We try to do a bunch of other social things. Last year, we had a bunch of women coming in and we watched "Downton Abbey" DVDs. We rent out the building for special events: wedding showers, baby showers, parties.
Jones: Our Buffalo Wellness group meets here, too. We want to get more active in advocacy, raise money for research and share preventative programs. We want to be more proactive on the other side of the disease.
Q. What did you find most helpful here?
Jasinski: Of all the programs that we do here – and we do a lot – I really think the bonding and the friendship, the fellowship, is stronger than anything else we do. … I was blessed with many friends prior to the Breast Cancer Network, but these friendships are not like any other. There's a bond there. We're sisters. They've walked in my shoes and I in theirs.
Heaney: Our programs and services become a vehicle to develop friendships, to open up and talk about your journey. You learn from other people what they do, what doctors they see.
Q. Why have you stuck with the network?
Heaney: You get so much from the network and other people who have gone through this that you want to give back. It's rewarding to lessen somebody's fear. When you hear it from somebody who's already been through it, it's different than a doctor telling them – or somebody who says, "Don't worry, you'll be fine."
Jasinski: I always tell people that myself and the other people here are proof that there's light at the end of the tunnel.
Heaney: I had a terrible diagnosis. I was triple negative, which means that a lot of times chemo doesn't right. The fact that I had a recurrence 16 years later gives people a sense of hope. That's what you want to do because your mental attitude has so much to do with how you survive.
Jasinski: I think along the way I've been trying to fill a void that's never going to be filled, with my husband being gone. But something good has come from it. It is extremely rewarding.
Heaney: People you meet what you see is what you get. There's no dancing around. That honesty is great when you're going through a crisis.
Q. What is your budget like and how is the money used locally?
Jones: It's about $130,000 for expenses that include rent, utilities and expenses. All the money we receive is from donations – the fundraisers we do and people do for us. We pay instructors for all of our group fitness classes. We pay a professional facilitator for our support groups. We have a financial assistance program that people can apply for. We typically award financial grants of up to $500 apiece for people in need. So far this year, we've rewarded about 12 of these. Our mission is to help people. We want to make sure we can help people and we'll figure out how to pay for it.
Heaney: We always have a need for volunteers. People usually don't volunteer for the first year while going through a traumatic experience. That's why we give them a free membership. We're hoping that after that first year, they become a volunteer and partake in our programs.
Q. What have you found helps sustain you in the network?
Heaney: Being able to share information, from experience, seeing people having a positive experience. We just don't say the words, "Be hopeful." We act on it.
Jasinski: My motto is FUN, in all caps. It's difficult at times but very rewarding. Sometimes you give a tote bag to someone who has just been diagnosed and you literally have your arms around them while they're crying.
Q. What would be the one thing you want to say to somebody who's just been diagnosed during the last few weeks?
Jasinski: Come and talk to us. Get a free tote. See what we're about and how we can help you.
Heaney: Talk to somebody that survived and is an optimist.
Jasinski: We're walking in your shoes. It's not always easy, but you will get to a better place.
Twitter: @BNrefresh, @ScottBScanlon