Author Archives: Maria at MyLifeLine.org

Resiliency; A Cancer Diagnosis can Come with Gifts – Marcia Donziger’s Story

In 1997 Marcia was 27 years old, newly married, working as a flight attendant, and excited to start a family. Everything seemed to being going right, her life was full of hopeful promises. When she started to experience agonizing pains in her abdomen, she decided to get it checked out by a doctor. After an ultrasound, her doctor found a tumor in Marcia’s left ovary, but assured her that it must be benign, telling her, ‘you’re far too young to have cancer.’

Under the impression that she would be back to work and life as usual in no time, Marcia scheduled the surgery to remove the ‘benign’ tumor. She was anxious to have the minor health scare behind her; however, what would happen under the knife would change her life forever.

After a lengthy surgery, Marcia woke up in indescribable pain. In her daze, she was told that she had stage III ovarian cancer and that she had a hysterectomy. Suddenly, her dreams of having children evaporated into thin air.

“I had no preparation for a hysterectomy or losing my fertility, or having cancer, so it all hit me as I was waking up from surgery and in a lot of physical pain, to the point where I had to be on morphine for days to get through the pain… it was physically and emotionally very painful.” She said of the moment she found out about her diagnosis.

Her life was immediately turned upside down. With a vulnerable immune system due to chemotherapy treatments, she was no longer eligible to work as a flight attendant.  The airline offered her a “ground job” in the airport.  The most challenging aspect of this change in duties was not the lack of travel, or the change in schedule, but the fact that almost all of her coworkers were pregnant and grounded on maternity leaves.  When Marcia lost her fertility, those around her were flourishing in theirs.

“There I was… working alongside pregnant women every day, and they were in this exciting part of their lives,” Marcia recalled. “I was grieving my fertility while they were celebrating theirs … to say I was an emotional wreck would be an extreme understatement.”

As Marcia’s internal battle forged on, her marriage was beginning to flounder. The two were trying to get pregnant at the time of Marcia’s diagnosis, and neither were prepared to have that opportunity stripped of them.

“We were trying to work through the loss of our fertility together…when one spouse loses theirs, the other does too. It just came to a point where he decided he didn’t want to have children through adoption or surrogacy.  Our marriage quickly imploded, and we divorced a year to the date of my diagnosis.”

After her marriage fell apart, Marcia moved from Chicago to LA to be closer to family, and to start again, from ground zero.

As Marcia’s treatments came to a close, she found an inner strength knowing that she is capable of anything. Being diagnosed with cancer at such a young age shaped her into the inspiration that she is today.

“I had never really been through a difficult challenge like that in my life, I had never broken a bone, I had never been really sick, so to have a serious illness, face your mortality, lose your fertility, go through a divorce, move across country alone, and all in the space of one year was almost every challenge I’ve come to now…I developed confidence in my ability to bounce back, adapt, and maximize new opportunities. I didn’t know much about resiliency before I was tested.”

Another struggle that Marcia faced throughout her experience with cancer was trying to keep her friends and family up to date with the treatment process and her logistical needs. She was often too tired or too sick to update everyone individually and it was getting hard for her to manage those practical needs.

As a concerned friend of others facing cancer, Marcia experienced these difficulties as well. One friend Leslie, diagnosed at 16 years old, struggled to maintain clear lines of communication. She utilized email for updates, yet replies got lost in the shuffle.  Marcia’s friend Lori, diagnosed with brain cancer at the age of 33, utilized a personal website to update her friends and family. Marcia was inspired by this community of online support that revolved around Lori. Although Lori passed away after a two-year-long fight, her legacy lived on through her website. After she passed, Marcia called Lori’s mother who told Marcia, “that website was our lifeline.”

Leslie also tragically passed away at the young age of 27.  Both Leslie and Lori served as the driving forces behind Marcia’s creation of MyLifeLine.  Although Marcia had her own personal experience with cancer, she created MyLifeLine from the friend’s perspective; she created it so that friends and family could understand the process better, learn about key resources, and organize communities around serving the overwhelming practical needs– all while simultaneously providing love, support, and resources to the cancer patient.

“A cancer diagnosis can come with gifts.  I am incredibly grateful for the friends and family members who stepped in selflessly to help me throughout my crisis.  I felt so loved.  With MyLifeLine, all messages of love, support, and hope are centralized and organized.…providing an opportunity to create a beautiful keepsake book of memories and friendship.

MyLifeLine is a free service providing personal, private online cancer support communities to all families impacted by cancer.  Formed as a non-profit organization, MyLifeLine operates thanks to the generosity of hundreds of individual donors, sponsors, and grants.  Marcia’s passion for kindness and helping others has extended to improving the cancer experience and easing the burden of living with cancer for thousands of people; cancer patients, caregivers, friends, and family alike.

MyLifeLine has proved to be just that, a life line, for countless cancer patients, yet Marcia’s principles of authenticity and selflessness are at the foundation of the legacy she has built today:

“Everyone goes through some kind of personal trauma in their lives.  You may just walk by someone and have no idea they’re going through cancer treatment, and divorce, and grieving the loss of their fertility, so it’s always better just to give the benefit of the doubt and be kind to people, because I think we’re all more alike than we are different, no matter what challenges we are each destined to overcome.”

Diane “The Shark” Elmore’s Breast Cancer Story

Diane has always been a runner. As a devoted triathlete; running, swimming and biking were her passions. When she got the news that she had stage III breast cancer, however, she did not run. She decided to face it head on.

In September of 2016, Diane was racing in the Atlantic City Ironman 70.3. During the swimming portion of the race, she was kicked so hard that she thought she would drown. Although she was gasping for air and struggling to stay afloat, she persevered and made it to dry ground, and even went on to finish the race.

After a month, Diane noticed that the pain from the kick never fully subsided. Her doctor told her that it was probably nothing, but to get it checked out just to be safe. What she thought to be pain from the accident, turned out to be stage III breast cancer. She was completely shocked.

“I cried,” Diane said of her reaction to the news. “I knew life was going to become very challenging, and that my normal training plans would change into a new type of medical training plan.”

A new chapter in her life had just opened. Instead of training her body for the next race, she would be training her body to survive. Diane started her AC-T chemotherapy treatments in January and continued through April. On May 22nd, Diane had a double mastectomy with immediate reconstruction (tissue expanders). On May 31st, Diane was rushed into emergency surgery for a broken artery near her heart. After all of the surgery she was put under, she was given the disheartening news that her cancer did not respond to the chemo.

“That was unexpected since I had thought I was done with it all,” Diane explained of the reality that her cancer was still there. “That really stunk.”

After all that Diane’s cancer has put her through, she has kept a positive outlook on life.

“Some days are more difficult than others to make the choice that I will be the best me that I can, and not wallow,” she said of her fight to stay optimistic. What motivates her the most to be the best version of herself is her family.

“Life is short, and you just don’t know what will happen.  I am able to bike and run today, but I might not be able to tomorrow.  Each day is a gift.  I want my kids to know that, and take advantage of each day!”

Diane’s husband Kevin and her many friends have come together to help in ways that she could never have imagined. It has been difficult for her to ask for help in areas that she used to be independent, such as preparing meals and planning transportation for her children. She uses MyLifeLine to organize these things so that it’s not so much of a struggle.

Another challenge that she has had to face throughout her journey was the loss of her ability to exercise as she used to. Five years before her diagnosis, Diane lost 80 pounds in order to lead a healthier life and be around for her children. Diane has done her best to continue to train throughout her treatment, as it is a way for her to “hold onto some semblance of [herself] and [her] sanity.”

“I might not be fit enough to race right now, but I need to maintain sanity. I never regret a workout after it is done.  They clear my mind and make me sane and able to handle the treatments.  I think exercise should be part of treatment to keep us strong and get us through it!”

MyLifeLine has provided Diane with a forum to keep her family and friends posted as she continues her journey through cancer. “I am grateful to MyLifeline for the ability to post updates to family and friends as well as the calendar feature to organize meals and rides in one place.” She said of her MyLifeLine membership. Because Diane uses MyLifeLine, her brother, who is a policeman in Oceanside, California, was inspired to organize his police department’s participation in 2017’s Relay for Life.

Since her cancer diagnosis, she has learned to ask for help where she did not need it before and to make someone’s day better, even in small ways that she did not before her diagnosis. Although cancer has been a tremendous challenge in her life, posing great obstacles for Diane and her family, there is an upside to the experience.

“A silver lining to cancer is that I have felt loved in ways I never imagined before. Everyone should feel this loved during their lives,” she reflected.

Because of Diane’s perseverance and strong will, she is known by her friends as “The Shark.”

Be The Choice

In May 2015, I wrote to MyLifeLine followers: I am feeling great. I feel so fortunate to be at this end of things…I am back at work full time and have good mobility and strength in my arms…with each improvement I feel like cancer is a more distant memory. What I didn’t realize at the time was that while cancer treatments end, the cancer fight – and perhaps the fear of recurring as well– changes who you are and what you value. Everyone experiences this differently. For me, having had cancer as a young person further consolidated my perspectives on what matters: social justice and realizing human rights.

As a professor who taught international human rights law and social justice before my diagnosis (and following treatment as well!), my friends and family celebrated that my life was “getting back to normal.” But my life has never returned to “normal,” and I somehow doubt it ever will.

What became very clear to me as I sat in the many waiting rooms was that most people in treatment were scared, lonely, and isolated. Most critically, many didn’t know what treatment options they had and the choices they could – and should – be making in regards to their health. It was shocking to me when I met women facing a breast cancer diagnosis like myself who didn’t know about skin sparing surgical options available to them that might preserve significant parts of their breast (surgeries where the tumor(s) is removed but the skin and possibly the nipples and areolas, are left intact. These surgeries generally involve immediate reconstruction.).

It made me sad and eventually, it made me mad too. Informed consent, after all, means that patients understand what choices they have and make a decision based on the spectrum of options available to them. Although this has been a right in Canada since a decision of the Supreme Court in 1980 (Reibl v. Hughes), from where I sat in those drab waiting rooms, patients were not even aware that they had this right.

Out of this, Be the Choice was born. Be the Choice is a not-for-profit organization lead by survivors, doctors and other dedicated volunteers that is developing software that maps the various treatment decisions that may lie ahead for breast cancer patients. We use the image of a tree to help patients and their loved ones understand what treatments are involved and what sequence of treatments may follow. It’s easy to navigate, sharable, printable and portable. You can check it out here.

After two years of development and many bake sales (nipple cupcakes!), fundraisers (art and wine!), and one grant (thank you Canadian Internet Registration Authority!), we released a beta version of the tool in September. On June 8th we will be launching the first full version of the tool in French and English.

Early users are reporting that this tool makes a huge difference in their experience of diagnosis. One woman wrote that the tool completely changed her treatment trajectory. Another young patient told us that she felt more informed and in control before her biopsy – and that this helped her stay calm throughout the procedure. More testimonials are pouring in.

I could not be more delighted to hear this news and look forward to many more stories such as these. Having breast cancer sucks. But having something constructive and tangible result from that experience is both rewarding and healing. I could not be happier that my life will never be normal again.

Melanie Adrian

P.S. A big thank you to MyLifeLine for being exactly that: a lifeline that connected me to my loved ones while I was deep in the trenches of cancer warfare. My experience of treatment would have been so much harder had the site not been around. Consider Be the Choice a small pay it forward!

By: Prof. Melanie Adrian
Contact: melanie@bethechoice.org
Website: bethechoice.org

MyLifeLine.org Ribbon

MyLifeLine.org Announces Connecting for Cancer

MyLifeLine.org launched a new project this October, called Connecting for Cancer. The project was designed to honor MyLifeLine.org’s members, raise vital funds to support our mission and increase awareness about the programs and services offered by our organization to cancer patients, caregivers, family and friends. We chose the month of October to show our support for Breast Cancer Awareness Month and also to honor all people affected by cancer.

 Connecting for Cancer connects philanthropic businesses with cancer patients to match them with their greatest needs. All of the patients matched for the program are members of MyLifeLine.org and use our site regularly to update family and friends on their progress, treatment updates and overall wellbeing, as well as coordinate volunteers and raise funds for their medical costs. The goal of the project was multifaceted; the participating businesses made a donation to MyLifeLine.org to support our mission of providing free, personal and private websites to people affected by cancer. In addition, they donated their services to the patient they were matched with by MyLifeLine.org.

To read about the patient’s stories and more about the philanthropic businesses, visit the Connecting for Cancer website. You’ll hear about how Roberta Aberle, a featured blogger for MyLifeLine.org, got a new hair style from Harmony Salon, located in the Denver Highlands, as years of chemotherapy have left her hair in need of a makeover. The story of Kelley Gleason in featured as well, and how frequent trips to treatment facilities have left her car is need of help, and how Shortline Auto Group of Aurora, CO is donating new tires to her car. Another patient participating in Connecting for Cancer is Kris Pogue, who is connected to ClIintel, for meal delivery and professional family photography in honor of her brave fight with ovarian cancer. Our fourth patient in Connecting for Cancer is MyLifeLine.org’s very own, Tricia McEuen, in honor of her five year anniversary as a cancer survivor. Adjusting to her normal, Tricia was paired with Crestone Capital Advisors for financial advising and expertise to get back on track after her breast cancer diagnosis.

MyLifeLine.org is grateful for the participation of businesses in Connecting for Cancer and invite you to learn more about the project!

Connecting for Cancer MyLifeLine.org patients

Meet Lee – A Golden Retriever’s Dog Cancer Story

To say that an 80-pound blond, overly happy, obnoxiously loving, bouncing ball of fur is the alpha and omega of my life is probably an understatement. Meet Lee, my seven year old golden retriever whom I adopted at eight months old from a family who could no longer handle his energy or mischievousness. And for reasons that only make sense to 19-year-olds, these normally alarming attributes only made me more excited to adopt him, and little did I know what an impact he’d have on my life. Lee

To summarize what the last seven years with Lee has been like would be like writing an adventure novel with a “choose your own adventure” feature that he seemed to take quite liberally. He has accompanied me on almost every trip I’ve taken; road trips, beach weeks, holidays and family occasions. And has also been there throughout college and graduate school and my move from the east coast to Colorado about a year ago. The mischievousness quality his original owners warned me about was in fact a real thing.

To list all the hilariously naughty acts he’s committed or outrageous things he’s consumed could be an entire chapter but I’ll name a few for humor’s sake; the list includes (but is not limited to) a Costco size bottle of Aspirin, a couch (because what else would you do when your tennis ball rolls underneath it?), a pin ball full of sewing needles, rolls of dimes, a pantry of food, bags and bags of dog food, countless baked goods, a seven layer cake that you guessed it—took seven hours to make, and the list continues.

My brother calls him the “tank” and for good reason. He’s survived numerous diseases, including Rocky Mountain spotted fever, hypothyroidism and SARDS (Sudden Acquired Retinal Degeneration) – the last of which has left him permanently and completely blind.

To say his life was full and happy would be an understatement, it seemed like nothing could stop him and he was ready to tackle whatever life threw at him; which was good because he was about to get a whammy. Like most people diagnosed with cancer will tell you- nothing prepares you for a diagnosis and it hits you like a mac truck on steroids.

Maria and LeeOn a standard Saturday afternoon drive to a dog beach, my brother noticed a large blue lump on his neck that we hadn’t seen before. After a visit to the vet, a biopsy was needed. Suddenly a dog that could tackle any curve ball was facing the unknown world of tumors and tests. And then the waiting game; 5-7 days for biopsy results. This should be a form of cruel and unusual punishment because I ended up spending those days googling what it could be and learning more about oddly colored tumors on canines that most people need to know in a lifetime.

And then the results – a form of Melanoma caused from direct sun exposure that had spread into an aggressive form of Sarcoma. Without missing a beat, I knew surgery was needed. A four hour procedure and 12 stitches later the surgery was a success. Further tests showed his amazing vet got clean margins so, for now, no other treatment was needed.

Lee dominates the majority of my social media content, partly because my existence on earth doesn’t even compare to the hilarity of his life and he seems to have a cult following of his adventures—so the natural step was to post the news online.

I was suddenly inundated with phone calls, Facebook messages, Instagram posts and texts from all my friends and family from around the country. The love and support I felt was unreal but as a staff member of MyLifeLine.org, I suddenly realized why what we do is so important. To explain his story, the surgery, the results, how he was doing now, if I needed anything, what the kind of cancer was, etc. to everyone individually was exhausting and I was worried I wasn’t giving each concerned, caring friend the attention to explain things thoroughly.

What Lee went through with his cancer experience is small compared to what humans face when diagnosed with this disease, but it showed me how vital MyLifeLine.org can be for a patient and their caregiver. To relieve the burden of communication also relieves any guilt, responsibility and stress of explaining every step of one’s journey, and allows the information you only have to explain once to be organized, factual and thoughtful.

Lee is now back to his bouncing, obnoxiously happy self and can officially add dog cancer to the list of diseases he’s tackled and I can say I have a greater appreciation for the work of MyLifeLine.org and how its practical service can change one’s cancer experience for the better.