NETSTalk

November 1, 2021

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

In the time it takes to share a greeting on an elevator with a stranger, we need to have a description for our rare, incurable disease that does not lead the listener to a “deer in the headlights” reaction. This year, for NET CANCER AWARENESS DAY, we are asking everyone to begin crafting their personal elevator speech.

We need to be ready to tell our cancer story concisely and correctly every time we have the opportunity to share awareness of Neuroendocrine Cancer.

Strangers, new acquaintances, even some family and friends need to know just enough so they are motivated to encourage and support us, and to be sincere in their efforts to want to help us. INCREASING AWARENESS is central to our Neuroendocrine community’s expansion into the world of research. Heightened awareness benefits patients, physicians, and researchers as it leads to enhanced education, improved diagnostic tools and additional treatments.

What have I learned in five years of crafting my elevator speech?

I never begin by stating that I am a Stage 4 cancer patient. A casual listener will immediately start looking for signs of my demise. The subsequent comment about Grade 1 is wasted. Stage 4 NETs cancer typically does not equal Stage 4 prognosis of more well known cancers.

I rarely tell the location of my primary tumor as that (important to me) detail immediately will erroneously classify me as a colon cancer patient.

And I avoid details of my monthly SSA injections which will likely involve a long winded, unnecessary discussion about chemotherapy (SSAs are a hormone therapy).

Make your words count in the effort to raise awareness about Neuroendocrine Cancer so that others will be motivated to help.

“I have a rare, incurable, but treatable Neuroendocrine Cancer diagnosis. It has metastasized to many locations in my body, but it is a very slow growing cancer. With proper surveillance and a treatment plan crafted for me by my specialists, I anticipate a reasonable life expectancy. Thankfully, with increased awareness and research, new developments are giving us hope for earlier detection and improved treatments every year.”

I have shared my personal elevator story with you in hopes that you will share yours in the comments below. Together we will work to raise our voices for our Neuroendocrine community. Together we will make a difference.

And, as always, if you need anything we are HERE and ready to help.

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

October 1, 2021

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

The last Wednesday in July, I passed the important milestone of 5 years since I received my Neuroendocrine Cancer diagnosis. That occasion, however, was overshadowed as we celebrated our oldest grandchild’s fourth birthday. Talk of tutu wearing unicorns replaced any thoughts of cancer by everyone in my family but me. And I am so thankful for that! I have no time, no need, and no desire for a pity party.

Five years ago, my world turned upside down. I thought life as I knew it was over. A year later, almost to the hour, I held my first grandchild, and once again my life turned upside down. Or maybe, rightfully, it returned to right side up!

My life is different now; in many ways for the better. Having Stage 4 Neuroendocrine Cancer makes one acutely aware of life’s checks and balances. I take more time for the little things, and I allot less time to the energy burners. I have learned how to prioritize my time and energy. I have learned how to put my needs first when necessary. I have learned that I need less, and my wants are even fewer.

My family has been, and will continue to be, my biggest supporters and greatest strengths. We are a prime example of the saying that “There may be only one patient, but the whole family has cancer”. I am proud of how far we have come in accepting my NETs into our lives without letting it destroy our happiness these past five years. I am confident that whatever NETs throws our way, we have made it this far with a healthy determination to live life to the fullest, and we will continue to do so.

Amid the swirls of pink and purple streamers, tutu wearing grandparents and cousins full of unicorn cake, I had my private moment of awe that I have surpassed my initial, mis-informed, prognosis of 3-5 years. I took my time to reflect on all that I have received, and all I have yet to accomplish. Never to be NED, cancer is my constant companion now. But, it is no longer the 24/7 focus of my attention. I had a moment of quiet thanksgiving and private recognition for my journey thus far. As I returned to the festivities around me, I reaffirmed my knowledge that I am not alone as I live with my disease.

We here at NCAN want you to know that you also are never alone in your Neuroendocrine Cancer journey. Our hotline, our local support groups, our website and our events all bring support and encouragement to those who travel this path. Whether you are newly diagnosed, or an experienced patient, we want to be a part of your dazzle. When you need an answer to a question, clarification of a medical term, or a listening ear, NCAN is with you every step of the way.

Reach out if you need us. It’s what we are here for.

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

September 1, 2021

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

I’ve had a quote of Albert Einstein’s posted on my refrigerator for several years. It sums up my life as the wife and mother of engineers.

“Logic will get you from point A to point B.
Imagination will take you everywhere.”

I’m the artsy, spontaneous, creative thinker living amongst the logical, analytical, rational thinkers of my family.
Recently, following my Neuroendocrine diagnosis, a new quote, attributed to Deepak Chopra, has become more appropriate:

“The best use of imagination is creativity.
The worst use of imagination is anxiety.”

In my academic and professional lives, my creativity and my imagination were distinctive and beneficial. Now, my imagination gets me into trouble as I navigate my life as a Neuroendocrine Cancer patient. I know I am not alone in this scenario.

Twenty seven days in a row, I will be going about my days with rarely a thought about MY cancer, but on that 28th day, as I approach the oncology parking lot, my imagination starts going into overdrive. For the 4 previous weeks, I have creatively managed my activities to insure adequate rest and exercise. I have creatively crafted my meals to make good low amine food choices. I have used my imagination to maintain a volunteer presence in our NETs groups and to manage my family life and social time. But, on that 28th day, my creativity turns into anxiety. What will my blood work show? Will the nurse administer the shot correctly? Will the oncologist want to order new scans? What does he know that I don’t know? These are the thoughts that rob my sleep and steal my creativity.

What can we tangibly do to keep our anxieties under control?
• Educate, educate, educate yourself about your specifics of NET Cancer.
• Own it. Do not let a lack of knowledge or disinformation own you.
• Ask questions.
• Consult with and/or learn from a Neuroendocrine Specialist.
• Be your own best advocate and learn from those who understand it the best.
• Identify your support team.
• Be a support person for another NETs patient; join an NCAN support group. Start an NCAN support group.

Use your imagination and your creativity to develop lines of communication which will allow your family and friends to work with you to best understand your needs and your abilities while living with Neuroendocrine Cancer. And Remember, NCAN is always here for you. Call us. Write to us. Reach out when you need to, we are here and ready to help.

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

July 20, 2021

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

Do you ever get a song stuck in your head that just won’t go away? It might be a favorite tune or a totally irrelevant commercial jingle. This week, the Beatles’ “Magical Mystery Tour” has taken up residence in my brain, except I have read something which has caused me to alter it to “Medical Mystery Tour”. Isn’t that appropriate for a Neuroendocrine Cancer patient!

To exorcise these altered lyrics from my head, I did some research and learned that Paul McCartney once said that he and John were fascinated by the idea of getting on a bus without knowing their destination. Well, That certainly sounds familiar!

This album was the release of some of the Beatles’ most iconic songs. A fan wrote that the highly popular “All you need is Love” was the Beatles’ message to us that we should not see life as full of obstacles, but rather opportunities. Who me, a cancer patient?

By this point, my association of this album to my disease was becoming clearer. My Neuroendocrine diagnosis has certainly been a mystery at times. The journey can be clear one day and distorted the next. I truly try to see this journey as an opportunity rather than an obstacle, as hard as that may be some days. And, I hope I can encourage other patients to do the same.

One particular article stated that the Beatles considered “All you need is Love” to be a revolutionary song, which brought home this message to me. They thought of this song as a lesson, to learn to love and accept ourselves as we are, because “There’s nowhere you can be that isn’t where you’re meant to be”. Truth.

So many of us have no idea what chain of events prompted our Neuroendocrine cells to go haywire. We must accept the fact that we may never know the reasons why. But, the more we learn how to live well with our disease, the more we can be open to the opportunities it presents.

So yes, I have accepted that I am where I am supposed to be, and I will make the journey as joyful as I can. By accepting my diagnosis instead of fighting or ignoring it, I intend to be the best that I can be. And, I hope you will sing along with me.

If you need support of any kind, please reach out to us. That’s what we are here for.

Join us on September 30th – October 2nd for the 2021 National Neuroendocrine Cancer Patient Conference in Atlanta. REGISTER TODAY!

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

July 1, 2021

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

The invitations to present have been accepted. The meeting rooms are booked. Social distancing guidelines and Covid 19 safety provisions have been established. The registration for the 2021 NCAN National Conference is now open! It is time for Neuroendocrine patients, caregivers, and advocates to make plans to attend! The Atlanta Marriott Marquis will be our place to dazzle for 3 days beginning September 30th-October 2nd. The excitement and bright lights of Atlanta are a perfect location for us to reconnect in person.

CONNECT WITH OPPORTUNITY
Approximately two dozen specialists and advocates will give us multiple opportunities to listen, learn, and connect as they discuss treatments, research and new developments in our community. The question and answer sessions allow patients to submit questions for our experts and hear real time answers and discussions between the presenters. What an opportunity to hear potentially differing opinions or techniques. This year’s itinerary includes a wide array of topics, including several not presented in recent years.

The Exhibit Hall will feature many of the pharmaceutical companies whose representatives, literature and presentations will answer questions that may have previously alluded us. Frequently these booths include handouts and “swag” items.

CONNECT WITH VALUE
This year’s Early Bird registration fee is $125 per person if you register by August 15th. An expansive buffet is included during the Thursday evening Welcome Reception. This gathering allows the attendees to mingle with other patients and presenters in an informal setting. Registration includes breakfast, lunch, plus snacks during the twice daily breaks Friday and Saturday. If you have ever traveled on a company’s per diem budget, you will appreciate this amazing value! Also included will be a light buffet and live entertainment via a Zebras Have Talent show. This will be featuring comedy with the incredible Steve Mazan a NET Patient himself. There will also be singing and dancing by other talented NET patients on Friday night.

The Early Bird registration fee expires on August 15. Registration after that time will be $150 per person which is still an incredible value for the many perks you will receive.

The Atlanta Marriott Marquis has a limited number of rooms available at a NCAN discounted price of $159/night +tax when booked by September 8th. The facility has two swimming pools, a gym, and a sports bar just in case you need to release some pent up energy! Being in the heart of Peachtree Center, the Marquis is an easy 3 minute walk from the closest MARTA station whose one way fee from the airport is only $2.50.

CONNECT WITH AN INVESTMENT
This conference is an investment in your health. A NCAN Patient Conference is an astonishing place to learn how to live smarter with Neuroendocrine Cancer. If you have ever felt isolated, or minimized due to this disease, this is your opportunity to correct that. The educational information presented is the highlight of the conference, but most attendees will agree that the friendships developed by meeting other patients is an equally compelling reason to attend. A NCAN conference is also an investment in your mental health and is an experience like none other.

We will refresh our knowledge and gain insight into new developments. We will meet and greet many of our most highly respected specialists while making new friends. We will spend 3 days together investing in our well being and acquiring the tools we need to self advocate. It will be time and money well spent much like other investments we make on behalf of our families and our careers.

Please join us in Atlanta on September 30th. You will leave smarter, wiser, and more confident. It will be fun. It will be entertaining. It will be invaluable. Let’s reconnect with one another while learning to live well with Neuroendocrine Cancer. We are looking forward to meeting you in Atlanta!

CLICK HERE  for more information, or to Register Today!

Join us on September 30th – October 2nd for the 2021 National Neuroendocrine Cancer Patient Conference in Atlanta. REGISTER TODAY!

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

June 1, 2021

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

Numbers can have a grip on our lives, and frequently, our minds. Speed limits, gas prices, GPA’s, anniversaries. We count and tabulate numbers many times a day. I still remember a dozen or more childhood phone numbers. The numbers on a bathroom scale can haunt me for days. Last week I did some of my best counting ever as I sang a lullaby to our grandson.

“Two plus two is four.
Four plus four is eight.
Eight and eight are sixteen.
Sixteen and sixteen are thirty-two”

I quickly lost track of how many times I sang this slow melodic chorus before he fell asleep.

When I was newly diagnosed with Neuroendocrine cancer, counting took up a lot of time and space in my head. My emotions rose and plummeted with my monthly lab work. A slight nudge in either direction could cause angst or celebration. I charted those numbers like the statistician I could have been. My weight fluctuated all over the place and the countdown to scans was nerve wracking. I have thankfully mellowed these past five years. I finally understand that, for me, my NETs journey truly is a marathon, not a sprint. My current state has become comfortable enough for me that I no longer stress out over singular lab work numbers or slight hiccups in my care.

I have learned to set my sights on the old adage, “Don’t count your days, Make your days count”. I try to embrace each day for what it has to offer me. Some days are more productive than others. Some are more creative and social than most. Some days I simply must be a couch potato. But each day has the potential to be enjoyed. And, if we can release our minds from the tally of our days, we will find the ways to make each day count.

If we can help in anyway, don’t hesitate to reach out. You can count on us.

Join us on September 30th – October 2nd for the 2021 National Neuroendocrine Cancer Patient Conference in Atlanta. REGISTER TODAY!

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

May 1, 2021

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

“There are two types of tired. One that requires rest and one that requires peace.” — Lauren Fortenberry.

All of our Neuroendocrine Specialists will tell you that the overwhelming number one complaint they hear is fatigue. There is the physical fatigue that is imposed upon our bodies by our cancer. And there is the mental exhaustion as we try to live “normally” with our chronic disease. Some of it is cyclical and revolves around our treatments, while some is driven by the very real scananxiety that most of us experience at one time or another. Some of our exhaustion stems from the challenge and burden of learning an entirely new medical language. Much of our fatigue is from external sources, but we also have the capacity to churn ourselves into a state of exhaustion by not managing our thoughts about Neuroendocrine Cancer.

Many of our long time thrivers will admit to having a light bulb moment about their diagnosis. It may be an initial emotion following a ridiculously long diagnostic period. Others have had to work determinedly to achieve an inner peace with their disease. I think all of those who are living well with their NETs for many years will agree that a light bulb moment of acceptance was pivotal in their journey. It was a moment of peace with their new normal.

What was your light bulb moment? Can you identify the situation, the person, the test results that allowed you to become hopeful and joyful again? Can you remember the release of continuous stress leaving your body as you realized “Hey, I can do this!”? Can you retrieve that moment of survivor mentality to help boost yourself up again and again when needed?

Can you share your lightbulb moment with other NET patients struggling to adapt to their diagnosis? If you can verbalize it, I hope you will. If you can write it down, I hope you will. If you can act upon it, please do. We all need a ray of hope, a shining light of encouragement.

Raising awareness of Neuroendocrine Cancer is beneficial to us all. The developments in treatments and testing are progressing at a very rapid pace, and our community is growing in numbers and in knowledge. We need to be ready to help patients who are struggling to accept their diagnosis. By sharing our stories, we change the focus from “I” to “we”. Then, we can work together to turn “illness” into “wellness”.

Share your lightbulb moment below or on the NCAN FB page. Your light may be exactly what another zebra needs to hear.

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

April 1, 2021

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

Almost all Neuroendocrine patients have referred to their diagnosis at least once as “My Journey”.

Many of us with NETs are fortunate to realize that ours can be a long, fulfilling journey if we align ourselves with proper specialists, tests, and treatments. What we do not always realize at the onset is that Neuroendocrine Cancer is rarely a straight and narrow, uneventful path.

“I need a road map!” said a local support group friend recently. She was expressing her frustrations at having to change course, yet again, while navigating this crazy disease. “My dad taught me how to read a road map. He even taught me how to fold one correctly!” she said. This exclamation reminded me of my father-in-law’s attempts to teach me how to fold a road map correctly, and to occasionally drive in the less populated lane in order to travel safely, and efficiently. I have not used a paper map in years, but my talent for focusing on my destination by comparing alternate routes has proven beneficial time and time again since my diagnosis.

I can not give my friend my Neuroendocrine road map with my particular folds and detours, but I and other patients can share our experiences to help her avoid some of the potholes and detours. This journey is hers and hers alone. We cannot tell others what is best for them. We can’t predict how their journey will evolve. However, we can encourage them by sharing our stories. We can promise them that they will never journey alone.

As you move forward on your own Neuroendocrine Journey, here are a few “Rules of the Road” to keep in mind.

1). Don’t be afraid to ask for directions! Someone with experience is always willing to help

2) Don’t drive alone. Make friends with others who share a similar journey.

3). Stay flexible. What you have envisioned and what becomes reality may often include bumps, detours, and realignments. Just keep moving forward!

4). Have a Road Map. Refer to it often. Be willing to change the folds in order to follow the advice of our knowledgeable and experienced NETs specialists.

5). Enjoy the Ride. Yep! Living Well with Neuroendocrine Cancer is our travel goal.

6). Call NCAN for Roadside Assistance. If you find yourself on the side of the road, feeling lost and unsure, give us a call. That’s what we are here for!

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

March 1, 2021

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

Twenty years ago this month, after 7 years of misdiagnosis, a lovely lady received her neuroendocrine cancer diagnosis.

She saw first hand the lack of NETs information available and within two years decided to take action. She embarked on a journey to bring awareness and education to others who shared the same diagnosis. Today, the Net Cancer Awareness Network leads a community of over 10,000 people, including 33 Chapter Support Groups in the United States.

Since 2003, It has been NCAN’s mission to educate and support the Net Community. Our Chapter Support Groups are a vital part of this goal. They provide personalized support for NET patients, their caregivers and their families. NCAN has provided over 71 regional conferences for patients and caregivers over the last 18 years. National Conferences are held every other year, alternating between the east and west coasts. As multi-day events, the fellowship and friendships born at NCAN conferences have led to the formation of our Chapter Support Groups.

An NCAN Chapter Support Group may be just two members or it may be 50 plus members. It will likely include several patients and family members who are willing to share their experiences with Neuroendocrine Cancer lifestyles. Some groups are purely social, but most center around fellowship with educational opportunities too. Members may or may not share their stories, their feelings, and that’s ok. Sometimes you just need to be with others who understand what you are going through. A newly diagnosed patient can gain strength and encouragement. “Old timers” can offer experience and solace. Our group leaders facilitate the meetings to insure that confidences are always respected and judgement is withheld.

The camaraderie exchanged at Chapter Support Group meetings gives patients, their families, and their advocates the opportunity to get to know others living with similar challenges. They are places where lasting friendships are are built upon the sharing of common attitudes, interests, fears, and goals of living with a rare disease. They are places to extend a helping hand, and places to receive a helping hand. There, as part of our NCAN family, you will likely hear words of assurance: “Yes, I’ve been there too; I understand.”

Please visit us online to find the location of an NCAN Chapter Support Group closest to you. We look forward to welcoming you to the NCAN family, where absolutely no one fights alone.

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

February 1, 2021

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

Navigating Neuroendocrine Cancer is no small undertaking. As the saying goes, it takes a village – and rightfully so.

A NET cancer diagnosis is a huge, ongoing challenge. Many patients and experts suggest that living with a rare disease diagnosis requires as much time and attention as a full time job. It is essential for NETs patients to have a network and an understanding community to support them (and their families) when they need it most. That’s where NCAN comes in.

The Net Cancer Awareness Network helps to guide, support, and encourage NET patients and their families along their healthcare journeys.

Those initial emotions of shock and/or relief upon receiving a Neuroendocrine Cancer diagnosis are often quickly joined by feelings of isolation, confusion, and helplessness. The bewilderment does not go away quickly. Finding others who understand your disease; who live with your disease; who have hope for the future of your disease, can be the missing link to maintaining a healthy mindset and lifestyle. Public and even broad medical awareness of Nets Cancer is an ever evolving process, and can be overly challenging to attempt on your own.

There are Five basic ways NCAN can support you:

1) The NCAN Hotline: A 7 day a week, 9am-9pm hotline is answered by a Net Cancer patient or caregiver offering a listening ear, encouragement and resource information, 365 days a year. 1-866-850-9555

2) Website Resources: Netcancerawareness.org offers an overview of Neuroendocrine Cancer with resource links to major Research and Advocacy Groups for people with NETs. Also included is a Glossary to help make sense of the new terminology. A Calendar of educational and social opportunities is updated regularly. Previous Event Videos are stored here for easy retrieval. For inspirational or emotional support, Podcasts and a monthly Blog are found in the Resource Room. A Zebra Store even offers themed products to help raise awareness. If it’s information you want, this is where you can find it.

3) Conferences and Events: NCAN is well recognized for it’s regional and national conferences which bring Neuroendocrine Cancer patients, families, advocates and Nets specialist together for learning opportunities. Social events combined with fund raising efforts are also a part of our community. All Upcoming Events are listed on the website with links to easy registration. NCAN also participates in national medical trade shows and educational meetings; once again raising awareness for NETs.

4) Information Packets: are available and FREE for all Neuroendocrine patients who request them via the Website. These mailings offer a basic introduction to Neuroendocrine Cancer and some of the treatment options available.

5) Chapter Support Groups: The outreach efforts of NCAN have expanded to include over 33 Regional Chapter Support Groups for patients and their families. These groups meet multiple times a year and offer the opportunity to connect with, and learn from others who are living with Neuroendocrine Cancer.More information about these support groups and how to join is is available on the NCAN Website.

The awareness of Neuroendocrine Cancer is growing at a record pace due to increased diagnostic tools and a better informed public. The NCAN Community, our village, is always here for you if you need a little extra support. Don’t hesitate to reach out by phone or e-mail.

And remember, an essential part of our village is YOU. We need you to help us do what we do. So connect with one of our FaceBook Support Groups, join a local Chapter Support Group, and attend an NCAN event.

Someone is waiting to be inspired by your journey. Someone is wanting to become your friend. Someone is willing to make a connection that surpasses our common diagnosis, and offer support during challenging times. That someone can be you.

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

January 1, 2021

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

My Plan A included a tall, dark, and handsome husband, 3 children, a dog, a cat, a woody station wagon, a two story house and a successful career. We would travel the world over, entertain weekly with fine china and crystal, and be respected in civic organizations. My check list of accomplishments have included marrying my high school sweetheart (who is only an inch taller than I), two sons, innumerable animals, and modest cars and homes. My career included 29 years as a small business owner, and we have traveled to far more places than I ever dreamed possible.

Check, check, and check! Everything was going according to plan. Life was good. Then 2016 arrived with a Neuroendocrine Cancer diagnosis and a need for a Plan B. Surprise!

I quickly learned to review, remodel and revamp my Plan A. And, you know what? Plan B is pretty great!  Sure, it has demanded some modifications on my goals and activities. I have learned that a successful Plan B is most oftentimes a result of some good luck, thoughtful planning, and an excellent attitude.

America’s Oldest Sweetheart, Betty White, turns 99 years old this January. You might be surprised to learn that her decades long career in television is a result of a Plan B. Yes indeed, with 21 nominations and 5 Emmy Awards, Betty White has made the most out of her Plan B. Her first choice of a career, was to be a Forest Ranger! But women were not eligible to become Rangers at that time, and so she turned to acting. For all of us, I say, “Thank Goodness!”

In a recent interview focusing on her impending birthday and announcing her NEW television series, Ms. White shared some thoughtful advice relevant to our Neuroendocrine Community. She says a sense of humor is necessary and not to take yourself too seriously. “You can lie to others-not that I would-but you cannot lie to yourself”.  She encourages others to not dwell on the downside and to stay focused on the positive side of situations. “Being negative takes up too much energy.”

So, let’s take Betty’s lead and embrace our Plan B’s with a smile and a positive attitude. You never know where it could lead you. And if you need a little help putting together a Plan B, C, or D don’t hesitate to CALL US or E-MAIL US. That’s what we are here for.

Happy 99th Birthday, Sue Ann Nivens and Rose Nylund (AKA Betty White), from all of us at NCAN!

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

December 1, 2020

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

I make lists. I am really good at making lists. I delight in crossing items off of my lists. I make lists so that I can make plans.

I had made big plans and then Neuroendocrine Cancer happened. Some of the items on my lists will not get crossed off. So I made new lists and new plans have followed.

I made plans and then 2020 happened. Lots of items did not get crossed off my lists this year. Some of those lost plans won’t really be missed. Others, I am still grieving.

So, I made a “Naughty and Nice” list for 2020. It was an afternoon well spent, because I found, tucked away among the missed opportunities and failed plans, that many nice events indeed did happen in 2020. I no longer want to erase this crazy year from my life story. The pain and sadness I have experienced has allowed me to take inventory of my values. Repeatedly during this past year, I was reminded, once again, to celebrate small joys as much as the giant happy moments.

Now, I will begin to make my lists and plans for 2021. In a world with so many current unknowns, I want to make sure I include items which I know are obtainable.

A sign hanging in my local oncologist’s office offered these tidbits which really spoke to me. I hope you will consider making them part of your To-Do List for 2021.

1). Laugh every day—it is like inner jogging.
2). Silence is often misinterpreted, but never misquoted.
3). Faith is the ability to not panic.
4). Do the math—Count your blessings
5). A grudge is a heavy thing to carry.
6). We do not remember the days, but the moments.
7). Nothing is real until you experience it; otherwise it is just heresay.
8). It is alright to sit on your pitty potty every now and then; just make sure you flush when you are finished.
9). There is no key to happiness. The door is always open.
10). Surviving and living your life requires courage. The goals and dreams you are speaking require courage and risk taking. Learn from the turtle, it only makes progress by sticking its neck out.

Happy New Year and Happy List Making from all of us at the Net Cancer Awareness Network. Here’s to a very “nice” 2021!

For more bits of wisdom for your list, check out Inspiration Corner.

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

November 1, 2020

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

Whichever holiday you celebrate in December, there are multiple references to light. Many writers refer to the coming weeks as the Season of Light, perhaps to remind us to look toward all that warms and illuminates us as we head into the winter months. With 2021 on the horizon, I thought I might shine some reflective light on this past year.

I don’t know about you, but I’ve lost sight of some of my anchors this year. You know, the daily routines and annual events that mark another visit around the sun. Missed Birthdays and wedding celebrations. Summer vacations and visits with my grandchildren that didn’t happen. Looking back on this bizarre year of social distancing, I also realize I have spent a lot of extra time “in my head.” Some of that “head time” has been constructive and creative, (ask me about my “Taking my linen napkins out of the freezer and finally ironing them project”) while other times, not so much.

In my not-so-constructive moments, I can become rather fretful or regretful, which tends to dim my own inner light. At those times I am especially grateful for the people in my life who check in from afar. Sometimes they show up by phone or by FaceBook. Other times, with a snail mailed card or an unexpected gift. Regardless of delivery, I’m always so grateful for those who share their light, until I can find my own again. And with the expanse of social distancing all around us, I am especially grateful for our NET community. The outreach of support and encouragement to one another has increased notably this past year. And my hope for all of us is a brighter 2021! May our Neuroendocrine journeys continue to deepen our appreciation for life, and may we always continue to be a light for one another.

Check out the NCAN Zebra Store or the VIP Shopping Page for great holiday gifts to brighten your zebra friends’ and family’s holidays. In doing so, you also return support and spread the light to the efforts of the educational and awareness efforts of NCAN.

Get free shipping November 27 – December 4 using the discount code ZEBRAFRIDAY.

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

October 1, 2020

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

This year, I am finding particular comfort in the observance of Neuroendocrine Cancer Awareness Day. With 2020 being the most bizarre year on record, I see November 10th as a beacon of hope. This date is a constant in our calendar year. Many of us will wear our zebra striped clothes and accessories. I expect to see hashtags and profile picture speciality frames aligning our identities with zebras around the world. And, I imagine there will be a greater number of us this year evaluating our personal goals about increasing awareness of our rare disease.

In the four short years since my own diagnosis, I have seen a measurable amount of information and support increasing  from groups outside of our speciality organizations. I get fewer “deer in the headlights” looks when I share my story. The expanse of knowledge about NETs is growing which means additional research, treatments, and diagnostic tools are also increasing. This is great news and worthy of celebration, but we can’t stop there. We all need to do our part to continue to increase awareness of Neuroendocrine Cancer, pushing our cause forward, reaching for earlier diagnosis, and dare I say it, a possible cure.

To paraphrase a quote from Betty Friedman: “Having Neuroendocrine Cancer is not lost youth, but a new stage of opportunity and strength.” Let’s use that opportunity and strength to raise awareness and to further support our zebra community.

• What can you do?
• How much are you comfortable sharing?
• What actions can you take to engage others?

No effort is too small, and all efforts have a ripple effect.

Like so many other 2020 events, NCAN’s Strides for Stripes Awareness Walk will be a virtual format this year. Many of us will be participating by walking together with our “socially distant pods” and posting photos and/or videos on the NCAN Facebook page using #ZebraWalkAcrossAmerica. We hope you will JOIN US on November 8th and observe NEUROENDOCRINE CANCER AWARENESS DAY by Walking the Walk and Talking the Talk!

We hope to see you there!

REGISTER FOR VIRTUAL WALK HERE

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

September 1, 2020

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

“Peace is not something you wish for;
It is something you make,
Something you do,
Something you are,
And, something you give away.”

— John Lennon

As you grow along your journey and meet other Neuroendocrine patients, you begin to see certain patterns of behavior emerge. On any given day, we might be a survivor, a warrior, or even a victim. Some days, we will evoke all 3 personalities!

The days when I feel most like a victim of this disease are the hardest. These are the days I do not recognize my old self. These are likely the days when my fits of uncharacteristically Carcinoid Rage appear. These days make me feel sad, frustrated, remorseful and so very out of control.

On my warrior days, I feel accomplished! I complete the house hold chores; I successfully make wise food choices, and I allow time to rest when needed. My volunteer work is now, happily, my office work. My agenda of medical appointments sometimes doubles as my social calendar. I feel like a conquerer when I can boldly cross items off my to-do list. I complete phone calls and correspondence in a timely manner, and I feel like my old professional self!

It is the survivor personality, however, that I strive for each and every day. It allows me to crawl through the victim days and rejoice during the warrior days. It seems to me that the survivor mentality is the hardest for many patients to achieve and maintain. To be sure, I do not consider myself a survivor of Neuroendocrine Cancer since my particular prognosis will never be NED. But my goal instead is to be a Survivor of Living Well with Neuroendocrine Cancer. The majority of my days, I am successful thanks in part to the quote above and to the support of the NET Community.

Coming to terms with a NETs diagnosis is a process of growth. Accepting it and modifying your life to accommodate it are important for a survivor mentality. To live well with our disease we must find a way to do more than wish this life away. Embracing this identify in some fashion, acting upon the necessary changes, and realizing your potential to grow with it will almost certainly lead you to an inner state of acceptance. And with that survivor’s mentality, you can share that peace with others and that’s when self-healing begins.

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

August 1, 2020

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

“I’m new to this group… am feeling scared and alone.”

These were the words of a newly diagnosed patient whose first post jumped off the NCAN facebook page at me one morning this past summer.

Before I could put my coffee cup down to respond, those little dots began to appear. Someone else was replying at that very moment. Within minutes, the comment counter showed over 10 replies; and then quickly that number doubled. This patient’s introduction was so simple and clear. Everyone identified with her plea, and everyone wanted to help. I added my brief (and hopefully) reassuring greeting. Over the next hour or so, this newly diagnosed NeuroEndocrine patient was offered support, affirmation, and friendship by over 100 new friends who said ‘I know just how you feel’.

The response to learning you have cancer is never a shrug of indifference. Learning you have a rare cancer is mind boggling. If you are fortunate, you quickly realize the need to become your own best advocate. We attempt to devour medical data to educate ourselves, and we aim to collect anecdotal patient stories to learn how to cope with our new identity.

I attended my first NCAN conference 6 weeks post debulking surgery in 2017. I’ve since added 2 more. Each time, I have learned volumes of medical data from the presentations and added cherished friends to my Neuroendocrine family. Last month, NCAN was able to offer its first of three virtual conferences for 2020. I was amazed at the near seamless transition from in person to virtual. I knew we would continue to hear the informative presentations by the NETs specialists and advocates, but would the feeling of companionship and solidarity with other patients be expressed? Heck yes! This NCAN conference delivered again just as they have done many times before. Many patients shared sentiments so similar to those above as they visited in the chat rooms and the zebra lounge. A flurry of emails and text messages following the conference supported this as well! At the end of the day, our attendees had been educated and community supported.

Another Neuroendocrine patient has said “If you are working on something exciting that you really care about, you don’t have to be pushed. The vision pulls you in.” — Steve Jobs

And so it goes with the staff and volunteers at NCAN. They have a vision to educate and promote awareness about our rare disease. In our year of 2020, their vision had to adapt, and it continues to deliver. The excitement generated by these folks gives hope and empowerment to all attendees. The next Virtual NCAN Conference is scheduled for October 17. The final 2020 conference will be November 21. Both will have different topics and presentations. Both will have numerous opportunities to visit and connect with other patients and caregivers. Both are not to be missed. Please come join in our vision to increase Neuroendocrine Cancer awareness and REGISTER TODAY.

I’ll see you there!

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

July 1, 2020

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

Recently, I read an online article which quoted a University of Michigan scholar, Jane Dutton, who has studied the roles of the “invisible workers” within our health care systems. Ms. Dutton states, “It only takes 40 seconds of a caring interaction to change a patient in a way that affects their whole health trajectory”.

This reminded me of a nurse’s aide caring for me late one night following my debulking surgery. I was having trouble sleeping with all the racing thoughts of what was to come. She was a very young girl, probably in her first job. She offered to wash my hair, hoping to comfort and soothe me enough so I would finally fall asleep. I was skeptical, but her offer was better than lying awake with my mind spinning. She was with me less than 30 minutes, but her small act of kindness remained far longer. After she left, I remember feeling human again. I felt a new sense of hope that I would recover. Yes, from simply washing my hair.

One of the silver linings of a Neuroendocrine Cancer diagnosis, is our active and supportive Neuroendocrine Community. We are strong in our ability to empathize with other patients who share our frustrations with a poorly recognized disease. We all have at least one story of being misunderstood or misdiagnosed. We’ve all felt dismissed by physicians or family and friends. Once you have walked down our path to a correct diagnosis, most NETs patients are eager to help others navigate their journey with less frustration.

40 seconds. Less than the time it takes to brush your teeth.
40 seconds. Less than the time it takes to leave a typical phone message.
40 seconds. Less than the time it takes to make tea.
40 seconds, even from an invisible source, can have a tremendous impact on someone’s well being!

So, let’s continue to encourage each other in NET Community fashion! Reach out to a patient in need, answer a question, share your story, like a photo, or attend a Chapter Support Group Meeting. Even a simple heart, or thumbs up emoji can leave both the sender and recipient smiling.

And remember, if you find yourself needing 40 seconds, or more, please don’t hesitate to CALL US.
It’s what we are here for!

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

June 1, 2020

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

When you live in the world of having a rare disease, big time recognization and public awareness moments are few and far between. Publicity oftentimes accompanies a public figure’s death announcement and is frequently inaccurate. Neuroendocrine Cancer patients are dealt the double blow of a chronic illness and inadequate recognition among the medial field and the general public.

Beginning this month, our Nets patients are getting some much needed and appreciated awareness in a worldwide video advertisement by Ipsen Biopharmaceutials for Somatuline Depot (Lanreotide). Lanreotide is one of the most frequently prescribed medicines for a newly diagnosed Nets patient. It’s two most recognized benefits are slowing growth of tumors and management of Carcinoid Syndrome symptoms.

Why is this exciting news for our community? In the US, approximately 12,000 patients annually receive the news of a NETs diagnosis, and it is frequently accompanied by the statement “You’ve probably had this cancer for 5-10 years already.” Yet, Neuroendocrine Cancer remains classified as a rare disease (less than 200,000 diagnosed cases in the US). Consequently, we lag behind other chronic conditions in terms of education, research, and available treatments. For Ipsen Biopharmaceuticals to support our rare condition with this advertising project tells us that the potential for quicker and more accurate diagnosis is in our near future.

Take 1.32 minutes to view the commercial and share this heightened awareness with others. Increased conversations and recognitions benefit us all. We are certainly headed in the right direction, which is cause to celebrate.

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

May 1, 2020

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

At the age of 88, my otherwise healthy father, pictured above, was declared legally blind. My parents sold my childhood home and moved to a new town near my young family. After spending their entire married life together in the same home, in the same small, close-knit community, it was to be a tremendous adjustment. My parents handled it like champs! Most hurdles were managed quickly except, finding a new church family. They wanted one similar to the one they were reluctantly leaving behind, the one where they had volunteered in almost every capacity. Finally, my parents announced they had found their new church home!

The secret combination of the right fit was that my parents, even though well past their “prime years”, needed to feel needed. They still wanted to be able to contribute to their community. Even now, I can still see the delight in my father’s eyes as he proudly claimed that he had found his new position. “I will be one of the multitudes!”, he exclaimed.

I share this story with my Neuroendocrine Community because so many of us have been reduced in some capacities of our former selves. Jobs, relationships, and expectations are frequently disrupted as we learn to live our new Nets lives. But, we too, can be a viable, contributing part of the Multitudes! NCAN encourages you to be a part of our action for increasing awareness for our rare disease. We can educate ourselves about our disease and share that information, and our experiences with others. We can be a part of the effort to improve and support continued research for Neuroendocrine Cancer.

Since 2003, NCAN has led our Nets community in bringing emotional support and accurate information by providing an information hotline 365 days a year. Their yearly regional and biennial National Conferences provide presentations and interactions with respected Nets physicians, technicians, and hundreds of nets patients. Their network of Regional Chapter Support Groups now reach from the East Coast to the West Coast.

2020 is providing the springboard for more NCAN opportunities for you to be one of our multitudes. Three regional conferences are scheduled for fall 2020. Our Zebra Gala will be held July 25th in Charlotte, NC, and our Chapter Support Groups are actively embracing the world of virtual meetings. In July, NCAN will announce the details and open registration for our next National Conference to be held in March 2021 in Atlanta!

Please visit the NCAN website and check out the Resource Room and Upcoming Events to see how you can make a difference by becoming one of our multitudes.

Happy Father’s Day from all of us at NCAN.

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.

April 1, 2020

By Anne Dabbs, 
NCAN TN Chapter Leader, NET Patient

Early this morning, as the news outlets reported the passing of actor Irrfan Khan, I was immediately drawn to my recollections of his twitter account in March 2018 in which he disclosed his Neuroendocrine Cancer diagnosis.

“Sometimes you wake up with a jolt with life shaking you up… In trying times, please don’t speculate… Till then, wish the best for me!”

By June 2018, he shared more details of his diagnosis, confirming speculation that his Neuroendocrine Cancer was indeed a High Grade Neuroendocrine Carcinoma. Our collective NETs Community began to follow his media accounts more closely. It is an odd and lonely feeling to publicly share a cancer diagnosis. Not everyone can do it; not everyone is comfortable being so exposed. Not every patient can face the stares and questions which follow a incurable disease disclosure. Not everyone can address the research, education, and advocacy you must develop to successfully embrace a rare disease diagnosis. And yet, here was Irrfan Khan, at a high point of his acting career, sharing publicity and passionately his story which was certain to contain a poor prognosis.

The Times of India published his “A Note from London”, written while he was hospitalized for treatment in 2018. There, he talked about his fears, his concerns, his intentions, and then his absolute realization of this unpredictable turn his life had taken. And in that realization, he shared: “For the first time, I felt what ‘freedom’ truly means. It felt like an accomplishment. As if I was tasting life for the first time, the magical side of it.”
I cannot help but wonder if his admission of this unwelcome guest in his body, his research of his disease and those most capable of treating it somehow aided him in his acceptance of his fate. In February 2020, he shared a statement to accompany the release of his now final film, in which he concluded, “And we always have the choice to stay positive.”

And that is how I shall remember Irrfan Khan most of all. As an accomplished actor to be sure, but more importantly, as a wise man who realized that the life he had envisioned was not going to be played out as he had intended. One who surrendered his expectations into a realization that life IS what you make it.

We at Neuroendocrine Cancer Awareness Network extend our deepest condolences to the family of Irrfan Khan along with a genuine and heartfelt appreciation for bringing public awareness to Neuroendocrine Cancer.

Find out more about how YOU can help the NET Community.

Disclaimer: NCAN blog posts are the opinions of its writers and are not intended as a replacement for medical advice. Please consult your Health Care Providers for individual concerns.