Lisa Crites: Helping Mastectomy Patients Feel Better and Heal Faster

Lisa Crites

In her 30s, shortly after getting married, Lisa Crites lost her mother in a car accident. She was devastated and sank into a severe depression. At the time, she wanted to reach out to other women who lost their mothers tragically but it was too difficult. A decade later, she felt the same helplessness when diagnosed with breast cancer, but on that occasion she decided to take control of the situation and user her experience to help others.

“When my mother died, I never found a platform to help others but equally I didn’t have the strength to do it. When I was diagnosed with cancer, although I had no control over the cancer in my body, I did have control over how I could use what I was going through to make life better for other women. By developing the Shower Shirt I was not only helping others, I was helping myself.” (more…)

Angelle Albright: Easing the Burden of Baldness

Angelle Albright
Angelle and her her sister Danielle sporting Chemo Beanies

Before she got sick and everything changed, Angelle Albright lived a charmed life. At least she thought she did.

“I guess you could say I was a little egocentric. I would never have wished cancer on myself, but looking back on the trajectory of my life I would not change a thing. Breast cancer saved me. Without it, I would never had the opportunity to help others as I am doing now. But after cancer, I became a different person. My eyes were opened to a new way to live.”

The youngest of six children, Albright was Chief Video Editor at a New Orleans television station, then an English and journalism teacher before she took time off to raise a family. She was just 38 and had three children under the age of 9 when she got her diagnosis. (more…)

Deb Stanzak: A Brother’s Dying Wish Launches a New Career

 

Deb StanzykEven though there is nothing funny at all about what she has to say, Deb Stanzak laughs sometimes when telling her story because people don’t believe it’s true. Sometimes, she doesn’t even believe it herself. “It feels so far in the past, it’s as if it had never happened and then sometimes it feels like it was yesterday. I look back and the reality of what I went through hits me, and all I can say is ‘wow, how did I get through that?’”

Stanzak swears that everything that led to where she is today began when she was ten years old. A native of Cleveland, Ohio, the young Stanzak was crazy for sewing. It started with dolls’ clothes that were given to her by a relative; she was intrigued they were handmade. She even made a bathing suit that held together for an entire summer of days in the pool with friends. That bathing suit started her love for sewing.

Her career got a kick start at 16, when she applied for a job at Sears during high school. “I was turned down when they saw how old I was but as I was walking away the lady called out to me. ‘I see you like to sew. Are you any good?’. I told her I had made the clothes I had on. ‘Can you show me more?’ So I ran home and gathered all the clothes I had made over the years, and promptly got a job as the assistant to the sewing instructor in the Sears Sewing School. It was like winning the lottery!” she recalls with a laugh. (more…)

Christine Bienvenu: Reinvention in the Face of Adversity

CB profileIf it takes a special kind of woman to stand up to breast cancer, remain positive, question experts’ recommendations, and take control of her own care, then surely it takes an extraordinary woman to turn the whole experience into a career opportunity. Meet Christine Bienvenu.

At a time when most teenagers are contemplating college options, the then-17-year-old Bienvenu moved from Montreal, Canada, to Switzerland. In the land of Emmental cheese and punctuality, she had the opportunity to do an apprenticeship directly after high school. “Not everyone is made to sit in a classroom, the hands-on experience is very valuable for a lot of young people trying to figure out what they want to do with their lives. It worked for me,” Bienvenu notes.

Already fluent in English, she requested to substitute the language class requirement with a volunteer opportunity. She worked at a local senior center and liked it so much that she realized she wanted to continue the work outside of mandatory class hours. “I felt like a fish in water,’” Bienvenu recalls. After high school graduation, she signed up for a 3-year apprenticeship in a nursing home. And for the next 15 years, worked as a social activities coordinator in three different nursing homes, at one of which she met her husband, Alain. “In case you are wondering, he was the chef, not a patient. Who says exciting things don’t happen in nursing homes?” jokes Bienvenu.

In support of Alain’s long-time dream to open a restaurant, Bienvenu took a break to support him. Together, they worked a grueling 16–18-hour days, 6 days a week. “It was struggle, especially with a small child, and not particularly rewarding as the income was just enough to cover our expenses. We went into it a little too wide-eyed and optimistic.” So after two years, they decided to let go of the dream.

Bienvenu returned to the eldercare sector and found a job again as an activities coordinator, which she held for five years until a restructuring was announced. Her new contract required her to work irregular shifts. Her husband, head chef at a restaurant in Lausanne, also works non-standard hours. Between them, they agreed it would be impossible to manage the hours and two young children, so Bienvenu demurred, “I saw it as a sign to take a break and stay home with my little ones.”

And then came the terrible news. With no familial history of breast cancer and only 35 years old at the time, Bienvenu was diagnosed with triple negative breast cancer (TNBC). Considering her age, they had to move fast. Within one month of the diagnosis, Bienvenu underwent a tumorectomy in her right breast in hopes of saving it. Another month later, she started 18 weeks of highly aggressive chemo. Unfortunately, the tumorectomy revealed that her entire right breast had pre-cancerous cells and so she ultimately decided to undergo a bilateral mastectomy with immediate reconstruction. “It was a pretty intense time. When you are on the wrong side of the statistics, you just go with what you’ve got. You don’t really have a choice. I was ‘out to lunch’ for several days after chemo treatments and the children were so young. My husband, sisters, and mother had to pick up the pieces.”

At the time of her treatment, many of the cancer resources available for women suffering TNBC were targeted at older women, and Bienvenu had a hard time finding helpful advice. “The issues facing older women with cancer – not to detract from that – are very different. They don’t tend to have young children at home. The issues between husband and wife are not the same at 55 or 60 versus 35 years.”

She also found the Swiss support group meetings she attended to be anything but supportive. Generally Swiss people and are not known for their willingness to question authority. “I found everyone to be so passive in the discussion. It was always, ‘Well, my doctor says this…my doctor has it under control … But I’m not a passive person! I’m a proactive person, I like to get answers and do things for myself.”

Frustrated by the lack of information and the “old-school paternalistic approach” and knowing that she was not the only young cancer survivor in Switzerland with different needs, Bienvenu struck out to find like-minded people, women and men who would understand her. “I needed to find people who were like me, going through what I was going through, and with whom I could discuss things I couldn’t speak about with my family for fear of hurting or scaring them.”

She turned to the internet, specifically online cancer communities or forums and social media. What she found was very helpful and guided discussions she had with her oncologist. She questioned some of the advice she was given and started seriously considering a double mastectomy after she read that TNBC could be more effectively treated by removing all of the breast tissue. “I respect doctors but they are only human. Several heads thinking together on how to tackle a problem is better than one. There is a need to be more critical of traditional treatments. For me, it made perfect sense, the more I take off, the less chance I have of relapse.”

Her oncologist was not in favor and the surgeon was up in the air, so the no-nonsense Bienvenu got a second opinion from a Professor at the breast center in Lausanne, who also thought the double mastectomy was the better option. After weighing the pros and cons, the fact that there was no way to detect pre-cancerous cells made Bienvenu decide to err on the side of caution and undergo a double mastectomy. The dread of wondering whether the left breast would also one day present with TNBC won out over keeping it.

Through it all, she remained active on social media and maintained contact with people in the breast cancer community abroad. Although the online resources were remarkably helpful, they were targeted at a North-American audience. “It was very healing for me, but when it came to ‘translating’ all the advice to my context, I started to see the gaps. While the issues may be the same, the Swiss way of handling them is not. Much of the information on protocols, insurance, doctors’ approaches, financial aid and so on is quite different.”

And so the seed was planted for Seinplement Romand(e)s – an online breast cancer platform across social media – and in it, Bienvenu found her calling. If she could not find the support she needed, she would create it – as much for herself as for others. It was not going to be easy as the Swiss, even today, are apprehensive of social media.

To help get started, the resourceful Bienvenu turned to the Swiss disability insurance program for assistance in job retraining. It was clear she would not be able to return to her profession due to physical limitations that would restrict her from pushing wheelchairs, lifting elderly patients, and the like. At first, officials resisted. “They wanted me to train to be an office manager as they didn’t see the benefit in social media training. It was only the beginning of many battles I would have.” But Bienvenu was tenacious and finally won them over. She received financial support for a 1-year program in social media and online communities, which she started in 2012.

With her health back on track, she threw herself into her classes, “I absolutely loved everything about the courses. I finally found where I was supposed to be and it felt great to feel professionally competent again!” Her thesis was essentially the business plan of Seinplement Romand(e)s. The platform merges many channels of communication and is a place where French-speaking people can come to find information and support, share experiences, and exchange ideas with other patients about their situation. It is open to both men and women (thus the “e” in parenthesis indicating the feminine noun). “I wanted to make it inclusive because not only do men suffer from breast cancer directly, but they are usually the ones left keeping the household and family going while the woman is going through treatments or recovering.”

It hasn’t been an easy ride, but the resilient Bienvenu continues to push on. Two weeks before she presented her thesis defense for her diploma, she relapsed and had to start another 15 rounds of chemo and radiotherapy. Offline she reached out to lot of associations and women’s groups to try and broaden the community across Switzerland’s six French-speaking cantons. “That was a frustrating experience. Decision-making in Switzerland is highly centralized. There are 26 cantons, each with its own cancer organization. I got the same answer from everyone I approached: ‘Oh, that’s an interesting idea, but social media? We are not ready for that.’ But then my thesis advisor suggested – instead of going top down – to create the community from the bottom up. And so that’s what I did.”

And finally, the “top” is noticing and coming to her. Her community is growing all the time and Bienvenu has become very active in the whole Health 2.0 for French-speaking Switzerland and France. She will speak at Doctors 2.0 & You this summer and works in collaboration with the Geneva and Lausanne University hospitals on various 2.0 projects. She was chosen to translate Dave DeBronkart’s book Let Patients Help! in French. “Social media has enabled me to meet fascinating people that I wouldn’t otherwise have been able to meet and to get involved in incredible projects that I could never have imagined. It’s ironic that being so ill has enabled me to find skills I never knew I had, and invest in a passion that would grow into a career.”

Disability pension is a key form of support for Bienvenu and has enabled her to keep Seinplement Romand(e)s independent. “I want this neutrality so it can be open to everyone. I could probably cash in, I live in the country of pharmaceuticals after all! But right now, I am satisfied with the recognition that I am helping others. But honestly, it’s not even really the recognition. I do it for the community. I’ve made some wonderful friends, the journey has just become so fascinating. Who would have thought?”

Christine Bienvenu Tips for Surviving Tough Times:

  • Have confidence in yourself and your gut feeling. Trust that above all! You can respect experts in the field, be they in the medical sector or otherwise, but your own personal experience counts for a lot.
  • It’s OK to take no for answer as long as you have a valid and logical explanation why the answer is “no”, otherwise keep pushing.
  • In my situation, educating myself was crucial for me to stay strong and be considered an equal partner in my care. This can be applied to any situation really. No one can know everything, stay humble, and bring knowledge to the table.

Have questions for Christine Bienvenu? Post a comment and we’ll make sure she sees it. You can follow Christine on Facebook.

DeLores Aiazzi: The Antigen Expert Running for Mayor

Delores AiazziDeLores Aiazzi has always set her own timeline, whether it was going to college after having two children, or launching a career in politics at the age of 57 after a quarter-century career in microbiology. And if you happen to hear her stumping on the campaign trail, don’t be fooled by her gentle voice and demeanor. The microbiologist-turned-mayoral-candidate is no wallflower. “I may be soft spoken but I don’t let much stop me.” And for the would-be mayor of Reno, it seems like a natural career transition. “I’ve always been educating people, albeit mostly about microscopic organisms. This time around I have the opportunity to help the public understand what’s important in the community, see things from a different perspective, and make informed decisions.”

Married for almost 40 years, Aiazzi’s BA degree from the University of Nevada in clinical laboratory science led her to the Renown Medical Center Laboratory. Her first six years of working life were spent on the graveyard shift, a job she could manage while raising her children. She specialized in clinical microbiology and moved up to a supervisory position in the lab: “Clinical microbiologists are kind of like gardeners. We grow things and try to kill them in the best way possible,” she explains gleefully. “The goal is to let the doctors know what is going to work for the organism … we basically identify pathogens.”

Aiazzi spent a remarkable 25 years at Renown, the last 5 of which she became “the face of the laboratory” as the manager. “It was a big job. I managed 65 direct reports and oversaw specimen procurement.”

But then her breast cancer returned. The first time doctors caught it early and she was treated during the working day at Renown with radiation. This time around, it was more advanced but still no match for Aiazzi: “I would go chemo on Thursdays and be back at work on Mondays. Radiation was done during my lunch hour. I managed the situation pretty well and was able to continue working while receiving treatment.”

Nevertheless, the relapse gave her some pause for thought. “Renown was a big hospital and I thought I needed a change after all the chemo … something smaller might suit me better. I didn’t want to be a manager anymore.” And so, she down-shifted to “bench tech” with no supervisory duties for three years at the local Catholic hospital, St Mary’s. The change worked well for her, and she moved to technical specialist in microbiology, a position she still holds today.

So after 28 years in microbiology and still many years short of retirement, why all of sudden decide to run for mayor of Reno? “I had been feeling for some time the need for a change. I like my job, don’t get me wrong, but I love people and interacting with them. One day, the perfect opportunity just presented itself.” Her husband, Dave, an incumbent City Council member, had been considering the mayoral position himself, but soon learned that his current position actually disqualified him from running. Aiazzi explains: “That was definitely a game changer for me. Dave had been on the Council for 16 years and now he’s on the school board. Local politics had been a key part of our lives, and we were so disappointed when we realized he could not run. The community means everything to us.” They searched for some time for a candidate but no one with the right agenda emerged. “It’s such an important time for our city. I really felt like now it’s my turn to give back.  I literally woke up one day and knew I had to run for mayor, and I haven’t looked back since.”

The couple’s long involvement in local Reno politics spans 20 years going back to their successful effort to save the local city-run ski park from being sold by convincing the City Council to convert it to a volunteer-run organization. Sky Tavern, where gold Olympian medalist David Wise learned to ski, is still a volunteer-run operation today. “That initial experience taught me a great lesson: If you put your mind to it, you can actually make a difference. If you are the ‘they’ … as in the ‘they’ that should get things done, you realize it’s possible to achieve success.”

And it’s not like this isn’t serious business! There are 18 candidates for the non-partisan primary on the 10th of June. “It’s a diverse crowd, people really do have a choice about who they want to run their city this time around,” candidate Mayor DeLo explains.

Aiazzi works 10-hour days, 4 days per week and then uses her free time to research and catch up with the issues, meeting with different stakeholders to discuss their concerns and campaign. After we spoke, she was off to meet with firefighters fearing for their jobs. “It’s been an amazing growth experience. My top issue is to ensure we don’t take knee-jerk reactions to the economic situation. I want to try and manage the budget better and see if there are other fair ways to curtail spending and raise funds without cutting jobs first. We need to work more closely with our legislature to find new ways to pay for services.”

A great fan of Burning Man, Nevada’s annual Black Rock Desert art and community festival, candidate Mayor DeLo has attended for the past 18 years and is astounded by what can be achieved in such a short time when people put their minds to it. Her campaign is inspired by this “can do” attitude and the regeneration occurring in the artist community in Reno and neighboring towns.

She has some angst because a lot of work lies ahead but “I put my name in the hat, and here we go. Let’s see what happens!” Besides, the 57-year-old is not good at relaxing. For her, relaxing is “working through things”. She a force to be reckoned with, highly active, and hard working. “It’s a good thing I live in Reno, anything is possible here, there is so much going on.”

And if she doesn’t win, what then? “I’m going to get through the primary and then we will take it from there. No matter what happens, it has been a great experience for me. You’ve just got to put yourself out there. It’s tough to let people judge you but equally great to hear support.”

Good luck DeLo, and may the best woman win!

Follow DeLo’s progress on Twitter or check out her website.

Candidate Mayor DeLo Tips for Success:

  • Pay attention to the things that make you happy and that you keep coming back to you. They are not insignificant and can guide you to the right choices in life.
  • Sometimes, you just have to jump!
  • Don’t worry about someone else’s preconceived timelines – do things when it’s right for you.

Discussion

Have you ever considered quitting your job and running for public office?

Jane DiGiacomo: From Hamptons’ Lawyer to Small-Town Hospice Director

Jane DiGiacomo’s life story could easily be a film. The credits roll as she crosses the western prairies in her 31-foot Airstream camper, new husband and young child in tow, seeking out the important things in life and leaving law and a lot of baggage behind. But DiGiacomo is not an actress. She’s the real deal: a confident, happy woman who fearlessly gave up what most people spent their whole lives working towards, financial success and prestige, to experience the smaller pleasures in life: “I’m not special, we all are remarkable, we just have to see it in ourselves.”

DSCN0948 (1)
Jane, Miles and the mega-cool Airstream

Always attracted to understanding life’s fundamental problems, DiGiacomo studied philosophy at Barnard and was aiming for a PhD. But she fell into law when her father thought this a ridiculous plan. “He said he would only pay for me to go to ‘professional’ school so I guess this planted the seed that I probably should find a career where I could support myself.”

Paying her own way in the end, she attended the University of Minnesota, transferring in her third year to Columbia Law. From there, DiGiacomo worked as a litigation associate for three years in Manhattan. But city life was not really her thing, so she moved to East Hampton, Long Island, where she joined a regional law firm. “I did more independent, directly rewarding work and started building my own client base.”

After two years, DiGiacomo had risen up the ranks and was on serious partnership track. And then came what she calls “The Big Pause”.

In the midst of a divorce, DiGiacomo found herself at a crossroads. She started meditating regularly with zen sangha – studying with Peter Matthiessen – something that became a very important part of her life.

Her zen practice led her to take a leave of absence to sort out her feelings. The move shocked her partner champions at the firm: “I made no promises, I told them I was going away to do a meditation retreat for at least three months, maybe more, and that maybe I wouldn’t come back … It was kind of a big deal,” she adds with a chuckle.

She easily rented her small East Hampton house over the summer and headed north to join the monks and nuns at Gampo Abbey, a Buddhist Monastery in Nova Scotia for four months. “I got a really good picture of what that life would be like should I go in that direction. But it didn’t matter what I did. My neurosis followed me. I was still going to have to deal with my need to be valued and achieve external confirmation. I knew I had to go back to life and face it, I couldn’t run away anymore.”

Picking up where she left off, DiGiacomo rejoined the firm “continuing in high-powered mode.” And then, when she was 33, she got pregnant from a short-term relationship just around the same time she made partner at the firm. In addition to work, she dove into school and community activities to build up her life in East Hampton.

But keeping busy at work and in the community was not enough. “Even though I was doing well financially, the fact that it was just a means to an end was becoming really evident to me … I considered starting my own firm but this wasn’t something I was ready to take on as single mom. So I started working out of our smaller office where I had the chance to focus on local clients and test the idea of going out on my own. It was going well, and then I met Miles.”

Her life turned upside down as she travelled out West to see her new steady. She fell in love, not only with him, but also the expansiveness of the western landscape. “I knew it was going to be difficult to stay where I was.” Soon after Jane met the love of her life, her mother developed terminal cancer, a life event that opened DiGiacomo’s eyes to the truth – life is too short, don’t compromise.  “When she died I knew I was done.”

She took some time off to extract herself from her life: “Mom’s death readjusted my perspective. Having Miles in my life freed me to consider other options as he’s a computer programmer and able to work anywhere.” The plan was set. At 39-years old, she quit her job, they sold their respective homes and bought an oh-so-cool Airstream to traverse the country looking for a home. “We pretty much took off. We literally did not know where we were going.” The idea was to spend time in a few towns where they thought they might like to live.

Ultimately, Nelson, British Colombia fit the bill perfectly.

“It was no small thing because we had to immigrate. I couldn’t work for the first four years and instead stayed home with Kell and our two new children, Ziji and Elka.” Once their immigration status was resolved, DiGiacomo looked into becoming a small town law practitioner but was overwhelmed by the commitment involved: several exams, followed by a badly paid 6-month apprenticeship, commuting every day, and leaving kids in day care. “Then I realized I didn’t have to do that. Being successful financially was not what I needed. It was liberating that I didn’t care anymore.”

Once she had accepted this fact, the next steps were easy. She decided to earn a living doing something she really enjoyed and cared about deeply. And so she started looking more closely at community services and not-for-profit work. She is currently the Executive Director of the Nelson and District Hospice Society, a community organization provides volunteer hospice services.  In that capacity, she also works closely with Kalein Hospice Society, which has an expansive mission including encouraging dialog about how we create care for the dying and how this influences how we live our own lives. DiGiacomo is drawn to the work because it centers around questions with which she has struggled her whole life “Why are we here? What are we doing with our lives day-to-day?”

For DiGiacomo part of the answer has been coming face-to-face with one’s own death. She does not mean this in a morbid way but rather living the reality of knowing how precious our lives are. Her advice? Don’t get lost in the dream of achieving something. Get out there and do it. That’s what will make it all worthwhile.

Jane DiGiacomo’s Tips for Success:

  • If you are a working mom feeling torn about where you are spending your time, but also feeling like you are not cut out to be a stay-at-home mom, just do it (if you can). Spend some time with your kids. It will change who you are. It may encourage you to make different decisions about your career and future.
  • Once you no longer prioritize money, power and prestige, it’s a relief. You realize what’s important and it’s not that stuff. It’s really not about THE STUFF.

Discussion

Are your possessions, salary and prestige holding you back from finding true happiness?