Success is Being a Survivor

Author and 3X cancer patient, Jodie Guerrero

Author and 3X cancer patient, Jodie Guerrero

Success means so much – its definition is reflective of the heart & soul of the perceived successor. To me – Success is not just about chasing a dream and securing it – true success is a lot deeper than pushing through a physical barrier to win the prize on the other side.

I believe true success is flying in the face of danger, marching towards the fire and leaning towards the negative perception that your efforts will reap nothing or your existence is un-important.

Success is proving that your hunch was right, your dream was correct and your gamble paid off – NOT because you put in resources to get back (something for yourself). But, rather you gave your all for the good of others, for the delivery of kindness, for love in the form of understanding and ultimately sacrificial leadership for the fulfilment of a need in your community. Success can take many years and in most cases it does. It’s a gradual slope of hard work and its rewards are up there – on top of the mountain.

Why do I believe this? I am a survivor of cancer x 3, medical negligence, a disability as a result and currently 77 doses of cancer treatments to keep me alive and very soon a bone marrow transplant. I’ve seen people lose their fight, right in front of me. I’ve heard people tell me to be quiet and stop fighting for the suffering of others. Success is being a survivor and that’s what I am!!

What do we need to be a survivor? What do you need to be a survivor? A very important element for me has been faith and foundation. My faith is everything and the family who love me, combined with my faith are my foundation. Without a strong foundation – we may topple and fall, either mentally or emotionally. However, many people find other elements of underpinning to keep them strong, through the largest hurricanes of life.

Even with these ropes of strength in our greatest storms, we may still topple – however a secure footing will help us find it easier to rebuild again and seek help when we need it. This may include a shoulder to cry on, someone to take us to medical appointments/assist with medication or someone to call a Psychiatrist. There is nothing wrong with asking for help, I believe it proves our strength and resolve.

Being a survivor takes a strong desire to continue no matter what, a resolve to not listen to the masses or those who do not support you – this may include family and friends. Believe it or not, when we have a difficult health journey, people walk away – even folk who should not or those we thought we could rely on. Some of us often discern these individuals, as they run for the hills and never return, yes – even those who are related to us.

We may not understand this behaviour at the time, but often the ones that run cannot cope with our journey (even if it’s a long-term success) and in the end, we may find that these relationships weren’t contributing to our health anyway. For myself personally – of course, there are days when physically I find my daily duties difficult to fulfil – these days, I discipline myself to know & practice when I need a little extra medication/a little extra rest and a little extra prayer, these things are what survival currently look like for me.

After my Bone Marrow Transplant, I will have less cancer pain and more resolve to survive in a different manner – I will continue forward and enjoy each day blessed and given to me. I will enjoy every day granted to me with the family and friends who love me and the ones that have stuck around – they are the ones we are surviving for. They are the people who value our survival – we may not realise how many people around us cherish our life and the energy we put into surviving, however, I know most of us have a good handful and many more supporters after that.

Treasure the people who cling to you and love your survival – you are worth more than all the gold and jewels, on our beautiful planet – your life and the days you have are more significant than you could ever know – just ask the people who love you.

Thank you for reading, please feel free to contact Jodie at the following email address: Jodie@jodiesjourney.com

Online Patient Engagement Course Well Worth It!

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I am taking Stanford University’s course, Engage and Empower Me: Patient Engagement Design  and I am very happy with the experience.

This course is open to anyone and is really about How to engage patients to improve the healthcare experience for all. This class is the first of a series of courses to be offered by MedicineX and the new Stanford Medicine X Academy.

As stated in the course description, the goal of the course is:

“ to educate you about participatory medicine and empower you to create a more inclusive, collaborative healthcare system for patients. During this course, you will learn the science of habit formation, behavior change, and decision-making. You will gain knowledge about how human-centered design can empower people and help them make healthy choices. Finally, you will discover how social media platforms can be used to create robust patient communities and how self-tracking devices can provide day-to-day data points that motivate people to make positive changes.”

There are no prerequisites and the course is free. There are numerous guest speakers from patients to academics, industry leaders, researchers, and healthcare providers. The content is mainly video clips and there are quizzes along the way, so you have to pay attention! There are also Google hangouts each week with a neat little tech gadget that allows you to “like” or “not like” what is being said. When you “like” the comment, you hear applause (I thought that was a cute trick!) And there are conversation or discussion boards where you can post comments regarding a specified topic and you can read and think about what others are saying.

I did learn quite a bit from this course. It is difficult to modify behavior or engage individuals, and this course talked about the science of engagement and what it takes to engage people. And of course, you can apply the strategies and lessons learned to reach your own personal health goals, to help others reach theirs, to create innovative healthcare solutions on a small or large scale, or to be a more empathetic and inclusive healthcare provider.

Dr. Larry Chu

Dr. Larry Chu

I spoke with Dr Larry Chu, one of the designers of the course. Dr Chu is Associate Professor of Anesthesia on the faculty of the Stanford University School of Medicine and studies how information technologies can be used to improve medical education and collaborates with researchers in simulation and computer science at Stanford to study how cognitive aids can improve health care outcomes. Dr Chu is the Executive Director of Stanford Medicine X.

 

Dr Chu explained that through Medicine X and the new Stanford Medicine X Academy, he wants to offer 2 certificates of learning; one for industry leaders and healthcare providers (HCPs) and another for patients.  The current course that I am taking is geared towards the HCP audience and will be required for that certificate. Courses for the certificate offered specifically for patients are due to start Spring 2015. From the website  :

“The certificate, awarded by Stanford Medicine X, will focus on the what, how, why and strategies for becoming ePatient leaders.”

Dr Chu is dedicated to the idea of patient engagement and empowerment. And he is dedicated to providing accessibility to education. When asked to give his thoughts on the course and why he created the Stanford Medicine X Academy, he answered,

“Online courses like this one provide accessibility to education. The course is about what it means to engage patients for industry and healthcare providers. True engagement requires culture change, and starting a discussion is a first step. I am happy with the discussions around the course potential. Courses like this one can be powerful tools to get people to think about the issues of engagement.”

Please consider going to the Medicine X website and watching some of the videos, reading their blog or perhaps enrolling in one of their courses. There is a spring course offered in Design for Health – design innovation to improve healthcare – that sounds very interesting.

Multiple Myeloma Town Meeting at MD Anderson: Takeaways

Myeloma Meeting Nov 2

I’ve just returned from MD Anderson in Houston where I facilitated a Multiple Myeloma (MM) forum put on by the Patient Empowerment Network (PEN). The program was titled “2014: Accelerating Progress in Myeloma and What it Means for You” and attended by 225 MM patients and caregivers plus another 40 folks watching live on-line.

Drs. Robert Orlowski (MD Anderson), Gareth Morgan & Faith Davies (both at the University of Arkansas) clearly explained what MM is (including MGUS and Smoldering) and its symptoms.  Did you know in just the last month, ultra high risk Smoldering MM, which is asymptomatic and treated as “watch & wait” has been reclassified as actual Multiple Myeloma where patients should consider treatment?  These doctors summarized current treatments as well as clinical trials for new drugs and protocols, focusing on new monoclonocal antibodies as well as future patient biology testing enabling more precise treatment recommendations for a given patient.

Later in the day, our panel of doctors was joined by a myeloma nurse practitioner, social worker, and 2 patients who all shared their thoughts on how patients can monitor and plan their treatments while living well with our cancer.  We all have varying degrees of MM symptoms and treatment side effects which need to be managed by our health team, perhaps the most important member being a patient’s caregiver.

In addition to breakout meetings where patients met each other and shared experiences while asking questions, many of which were addressed by the panel, the final hour of the forum was spent answering questions from both the live and on-line audience.  Sample questions included maintenance recommendations after transplants, length of bisphosphonate (aredia or zometa) usage, and the mental issues of testing every 2 months for smoldering without starting treatment. These are difficult questions without precise answers but our doctors and other panelist shared their experiences and advice.

I have no doubt (because many told me afterwards) that this program provided a wonderful education for both myeloma patients and their caregivers.  As a 20-year survivor of MM myself, I am proud to be associated with PEN and help make such a program possible.

(The following is from the editor)

This meeting was the first PEN meeting that was live streamed using Zoom.us technology. I registered for the streaming and watched the Houston meeting from my couch in Charlottesville, Virginia. The audio and video were very clear. The video was so clear that many of the photos below were the result of screen shots that I took while streaming. I loved watching this meeting online. The reason is, that I have been to these meetings and I have talked to the participants. The patients and their families so enjoy the meetings and so enjoy hearing the experts speak and listening to the patient stories and the patient questions. How wonderful that now we have a chance for more patients to benefit from these meetings. Many patients live too far to attend these meetings in person. Many are homebound or too sick to travel. Live streaming the meetings will give those patients a chance to watch the event.