Author Archives: Maria at MyLifeLine.org

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

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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.