Cindy Lovelace & The Healing Net Foundation

 

Years ago, when I first went to a camp for cancer survivors in the Nashville, TN area I felt like an outcast. I do not define myself by the cancer I had and so being there, around survivors and some still fighting the disease, seemed odd to me. I honestly felt like leaving out of denial that my life would forever be different and I would be bonded with so many of these people. But at that camp, I met a lifelong friend and feel I have changed, as a person and as a woman, for the better.

My friend I met there, Cindy Lovelace and I made an immediate connection the

moment we met. It was like an electrical shock, someone we just clicked, laughed about the same kind of things and saw life very similarly. It felt like an old comfortable shoe, except Cindy doesn’t look worn and tattered! She is vibrant, dynamic, and has an energetic personality.  Cindy’s faith in God is as strong as any clergy that I have known.  With an unshakable faith and deep abiding respect for human life, all the moments that make up a lifetime seem to matter to her.  And yet, so many of us wonder why such a strong, sharp intelligent woman would have to get re-diagnosed with cancer. Not only does she live with cancer, but it is a more rare type, Neuroendocrine Cancer, a word I can barely spell or say.

Cindy  has approached this like so many other things, in the years I have known

her. She is not lying down.  In most people’s eyes, she is a fighter.  I prefer to think of her more like a warrior, as she plays offensively in a battle with cancer as well as defensively.  And so it is with this diagnosis. 

Though many of us that love her pray reverently to God for a cure and for her long lifeline, she focuses on where she can make a difference with her life. Most

of us are much more affected by her disease than she is, mentally anyways.  She sees it as another opportunity to grow, a reminder of the preciousness of life and as a cause she needs to educate others about and help raise resolutions, research dollars and overall awareness. 

With that in mind, I asked Cindy, who is currently the President of Healing Net Foundation, an organization that devotes all its energy to Neuroendocrine Cancer, to address a few questions.  What follows is her responses, immediately after the questions stated by a novice, unfamiliar with this type and wanting to know more.  I hope you find this extremely informative and pass this information on to anyone who has ever battled something that seems incurable.  

How common is neuroendocrine cancer?  Neuroendocrine (or Carcinoid) Cancer is considered rare, but my experience and the experience of so many people being diagnosed in the United States, is starting to challenge exactly HOW rare.  The best guess is that 5,000 people will be diagnosed in this country each year, but I feel those numbers are rising rapidly.  It could be because of better diagnostic tools, more awareness, or unfortunately, an increase in the incidence of the disease.

Is there a common profile or demographic type that develops this type? It is diagnosed in children all the way to older adults, although the most common age seems to be around 45.  Male and Female

How much current research is going on with this type of cancer?  Is the research focused on cures, treatment or prevention?  Research in the United States is in pockets at best. One example is the University of Iowa, which was just recognized as a Center of Excellence in NET research.  The team there is led by Dr. Thomas Odorisio (Endocrinologist) and his wife Dr. Mary Odorisio (Pediatric Hemotology) Both of these physicians gravitated to treating neuroendocrine patients because of an influx of cases, and are now regarded as one of the few experts in the U. S. Right now most research is focused on treatment and cure.  No one knows exactly what causes it. However, most of the research as well as the latest treatment options developed in Europe, and as a whole, Europe continues to outpace the U. S. in the advancement of care for neuroendocrine cancer.  The grandfather of Neuroendocrine cancer research is considered to be Dr. Kjell Oberg of Uppsala University in Sweden.

What are warning signs you might have this type of cancer? Do GPs have this information and know to look for it? It’s complicated.  Some patients present with symptoms that mimic GP disorders such as Crohn’s disease, IBS, etc. These symptoms can range from flushing (face red/purple) to diarrhea and stomach cramps, even a racing heart. However, some patients have NO symptoms and the tumors are found incidentally when tests are run for other reasons.  Patients with symptoms can be misdiagnosed for years and treated for benign disorders when they really have cancer. It is a slow growing cancer, but can be insidious and eventually vicious if not found and treated properly.  As to whether GI’s have this information:  Maybe.  Maybe not.  Most physicians are told in medical school they will be lucky to see even one case in their lifetime. So they are not prepared to consider the disease as a possibility and tend to treat first for the more benign disease this cancer mimics.

Are there screening recommendations for neuroendocrine cancer as there are for many other types? Not really unless a physician suspects.  Then you can run some blood tests that could show some unusual elevations in gastrin, chromogranin A, glucose, etc.  This is a cancer of the hormone producing cells, and that is also what makes diagnosing this cancer so tricky.  There are all kinds of hormones are bodies secrete, and finding who is causing the trouble, and why can be very complicated.

How do you diagnosis it for sure, a particular test?  It is usually diagnosed when a tumor is found, biopsied and stained.  Then you know it’s neuroendocrine and can also tell what grade it is. The higher the grade the more likely it is to metastasis. This cancer is slow growing, but it does metastasis. The most likely place it goes whether the primary is in the lungs, pancreas, intestines, stomach, female organs, etc…it the liver.  There is another hidden element of this cancer. It tends to NOT show up on traditional scans. CT scans MIGHT catch it, and even the MRI is known to miss it.  There is a new scan, used in Europe for several years, called the Gallium 68. It is still in clinical trial in the U. S. even though the first trial was begun at Vanderbilt in 2011.  I was actually one of the first to take that scan.  A neuroendocrine tumor had been found in my pancreas and removed but my doctor, Dr. Eric Liu, suspected it might have already gone to my liver.  An MRI was negative.  Less than 30 days later I had the Gallium 68 and two tumors in my liver lit up.  This diagnostic test can be a lifesaver. FDA approval is said to be imminent, but it cannot happen soon enough to help so many people.  Sometimes this cancer is diagnosed because the patient has not responded to treatment of the benign diseases it mimics, but then, the cancer might have progressed and metastasized beyond surgery. 

Are you ever totally healed from it or does it just go in remission? At this point, you are never healed, and while you can go in remission, many patients live with the tumors until they become bigger or cause enough trouble to need to be removed.  That is my case.  I have tumors in my liver.  Some have been removed, others are still too small to be seen.  This cancer tends to “seed” the liver, therefore the tumors grow at different stages.

Is there an increase in this type in recent years?  I think so, but I cant prove it.  My work in establishing the Healing NET Foundation to focus on awareness and education of the medical community at large has brought me in contact with a lot of new patients, and the list grows every week.

What is the success rate in treating it in the early stages? It is very successful if you catch it early and there are folks now who have been living with this cancer for 20+ years.  However, there is the problem that it’s so difficult to diagnose, and especially so in people with no symptoms. 

If caught in later stages, what is life expectancy? Even in later stages, people have been, at the very least, greatly helped in their daily quality of life and the prognosis can be several more years.  Again, it depends on where it is, when it’s diagnosed, and if you are fortunate enough to be seen by an expert who really understands the disease.  There are many many sad cases of people who were given incorrect information and either not given enough treatment or given too much treatment. 

Who is highly involved in research in this field since it is not as well known? Is it being studied overseas, other countries? Europe. very few in U. S.

Which country is the most advanced in their diagnosis and treatment of neuroendocrine cancer? Sweden and Germany

What percentage of oncologists specialize in this type? There are some specialists who understand it, and treat a lot of patients.  My doctor, Dr. Eric Liu, a neuroendocrine cancer surgeon, has recently opened The Neuroendocrine Institute at Rocky Mountain Cancer Centers in Denver.  Dr. Richard Warner (GI) at Mt Sinai in New York established the first center on neuroendocrine and carcinoid in this country.  I mentioned Drs. Odorisio at U of Iowa. There is also Dr. Eugene Woltering and team at Ochsner in Louisiana.  There is an expert oncologist at UK Markey Cancer Center in Lexington KY—Dr. Ed Wolin.  Dr. George Fisher at Stanford was one of the physicians who treated Steve Jobs, whose neuroendocrine cancer caused him to seek a liver transplant and he died from complications of that surgery.  But these and a few others are just pockets of physicians in the U. S. There are major cancer centers who do not have experts, and unfortunately people go there expecting the top treatment, and well, doctors don’t know what they don’t know. 

What is the one thing no one knows about this type of cancer and they should know? It is misleading to refer to a neuroendocrine cancer in the pancreas as pancreatic cancer.  It’s not the same as the more common pancreatic cancer.  Same deal in any other organ. This cancer should not be treated the same as other types of cancer. It needs a physician who has had a lot of experience, and is aware of all the latest research and treatment options.  You can live with this disease many years IF you find the right doctor. 

For additional information and to support research and awareness in this field, please click on the link to the website below.        

The Healing Net Foundation http://www.thehealingnet.org/

You can follow this organization on Facebook  the healingnetfoundation   

or on  Twitter @HealingNET1

Fall is Approaching

The ending of summer is like turning a page to start a new chapter.  The memories of what we did and how we spent our time will be something we will hold dear in the cold winter months.  But with each season comes a whole new set of experiences, often unique to that season that we can cherish.

Summer was full of color this year in Tennessee as there was enough rain to keep flowers in bloom. Grasses stayed green instead of turning brown which made for scenic walks and drives. Kids rode bikes as there were plenty of warm days. The swimming pools in the neighborhood and elsewhere were packed many days as everyone outside headed for a cool water of body to try to withstand the heat.

Our pool water became quite warm, feeling more like a bath than a cold dip in the pool. But nonetheless, we used it, swimming for exercise, lounging on floaties and hanging out with friends in the water just to chat.  Oh there was even a day it was raining and I found myself with a raft over my head talking to a friend that was doing exactly the same in the center of the pool! Nearby friends were laughing as we must have looked silly.  But then again, summer brings out the child in all of us, from time to time.

Hoping your summer was full of moments worth remembering.  Every day is a blessing so each is worth celebrating whether it is the heat of summer or the oncoming fall foliage turning colors. Savor it for it represents the best nature has to offer us.  In turn, may it inspire you to make the changes you need to make so that your next chapter is worth reading!  

The GOP Debate Tonight, Sept. 16, 2016

Perhaps I need to precede this by no attacks are needed. I am merely reflecting on the current state and all opinions, actually of my own, are not endorsed. 

The GOP debate at CNN is tonight. I really do not get into public discussions on politics. Two reasons, I don’t feel well enough informed on all the candidates. Secondly, I don’t want another reason for people to hate me. Let’s face it, people, in general, are strongly opinionated on politics and throw venom at people that don’t support their views.

It is so interesting to see someone who so many never thought had a chance would become so popular.  In a way, being a celebrity and being involved in politics is nothing new.  We have seen tons from Sonny Bono, Clay Aikens, Arnold Schwarzenegger, Jesse Ventura to the top office, Ronald Reagan. Perhaps it is fitting that this debate takes place in the Ronald Reagan Presidential Library in Simi Valley, California. Here we have our celebrity candidate, Donald Trump in the center stage, the middle podium tonight as he is rated the highest in popularity.  Yes, even in the very state Ronald Reagan got his political career started. 

Is it possible, being the most widely known to the public has something to do with his popularity?  Being a household name puts you in the forefront of people’s minds. According to marketing strategies, it doesn’t get any better than having the entire general public know who you are. Infact, that matters more than what you say.

Many Americans don’t know much about any other candidates so they are supporting Donald Trump. I am not voicing my opinion one way or the other, just stating that it is kinda funny to watch how fickle our society is, even, yes, in politics.

Ronald Reagan Presidential Library in Simi Valley, California. Here we have our celebrity candidate, Donald Trump in the center stage, the middle podium tonight as he is rated the highest in popularity.  Yes, even in the very state Ronald Reagan got his political career started.  

Americans are the first to throw daggers at their government and the very system that was created when thousands of young men died fighting for freedom, to have a democracy.  And yet, when it comes to having a say, more people are supporting the candidate that doesn’t talk about his strategies much or his policies he will enact but focuses on what government isn’t doing and what he strongly dislikes about other candidates. In any of his companies, this type of controversy or behavior such as mutiny would be met with his famous line, “You’re fired.” 

However, negative campaigning is nothing new. Wherever there is competition involved, folks want to throw their competition under the bus.  We, as Americans, often do the same to anyone who doesn't agree with our political views. Thus, perhaps we are to blame for some of the antics that go on in politics. 

This election campaign is not just about Trump but what is good for the country.  Republicans have somehow aided the media in letting one candidate dominate the news.  Infact, our process does not limit the number of candidates that can run, thus we have a sea of candidates running. How in the world is the general public supposed to learn and research each one to make an informed decision?  With so many to consider, it takes time to become informed and most of us are living on scarcely time to get our daily tasks accomplished.

I have to say, I love being in a democracy but in a country where many are starving, have no way of affording medical insurance, I find it somewhat embarrassing so much money is throw into the campaign ring! When only one Republican candidate will come out at the end carrying the ticket, why are there so many running?  And Obama has somewhat taught us that with a Congress not on your side, you can’t pass legislation whether it is good for the country or not.

So perhaps the easiest way to get a President in office that can accomplish what they set out to do is to let Congress nominate who the two candidates are they want running. Oh, I am sure folks are reading this saying it won’t be fair because it is dominated by one party or the other. I am just being facetious here. But perhaps our voting for Congress folks in our areas gives us more control over those candidates than who is running for the presidency.

As you watch the debate, see how much opportunity you have to learn equally enough about any of the candidates to really say one is better for the job than any of the others. 

Jump into You and Fly

I use to think only a few have talent in art. As I have aged, I realize art is self-

expression. Thus, no art is really wrong or right, it just is. All art is a form of

representation of a person’s self-expression. And we all have a right to express ourselves. In the realm of art, everything is acceptable. There are no holds barred. Your spirit can come alive and soar.

Some of us that relish various art forms were not blessed with amazing skill, we were not given that artsy fartsy gene.  However, usually, if you explore and try out different things, there will be an area you excel in and find your work enriching to your soul.

In college, I learned a lot about the art of writing. Anyone with a college education can attest to the fact writing is required. Included types are literary critiques, term papers, open essay, and yes, in my case, even journaling and diary dream interpretations.

Some of these dream diaries, as they were called in a graduate level class on Freud and the Interpretation of Dreams were shared in small groups. Wow, I thought I had a vivid imagination! Some of the dreams of my classmates were so bizarre it was hard to look at them without my eyes wide and my jaw dropped.  I was grateful I was only required to interpret mine.  But that type of writing was educational actually. Dreams, at service glance, don’t make sense, when you are documenting them.  In writing about them, we were all forced to write a stream of text with no real flow, no story line, not a beginning or an ending.  It was difficult, at first, because we all wanted to embellish our words, put a line between all the dots.

The journaling in this class taught how to write uncensored, true free-flowing writing without there being traditional writing rules in place.  I challenge you to try it sometime. Write or draw or sing, whatever art form you prefer is, without a plan in mind.  What we learned is the more we practiced it, the better we got.  We begin to learn that our restrictions we put on ourselves daily limit our ability to imagine. This has a far reaching impact because it limits our imagination and our creativity.

In reality, we can’t fly, we can’t be on center stage, etc..but in our dreams we can. We may not be able to paint using every color imaginable but in our subconscious at night, with no sensors in place, we can.  We can paint the world! 

Finding a way to express what lights your fire inside is important. It adds a new dimension to you. Never get so busy in life that you don’t allow yourself cathartic releases and to pursue some of your internal spiritual passions. 

For me, frequently, it comes in the form of writing. Even when I was a young child with a limited vocabulary, I wrote. When I have a disagreement with people, I have always found writing easier. Ask my husband, he has been on the end of many letters I have written him even with us living in the same house!

Writing allows you to free flow your thoughts without interruptions. When we communicate, we gauge what we say off of, to a large extent, our viewing audience. Comments from others and non-verbal signals affect what you are going to say and how you express it, your word choice, and your delivery.  This is also true of artistry of many types. Half of the time is spent thinking about how it will end, the picture, the song, the dance, the sculpture instead of savoring the moment and just trusting it will come to an end on its own without you overthinking it.

Putting thoughts on paper, opinions, feelings, etc.  gives complete leadway to express oneself, much as a painter faced with an empty canvas and an array of colors and possibilities begins a portrait. Others perceptions change the way we walk, talk and our level of honesty. Try picking some art form and putting blinders on others viewpoints and impressions.  Just please you.

My writing may not be good, it may not spark an emotion in everyone but it feels wonderful to me. And when I read it back, I see the real me clearly, in the tone, the word choice, the topic.  Oh, I have read many of the great writers’ pieces. I have friends that work professionally as writers and their words are impeccable, their grammar and their style is much easier to follow than mine. But, I am not trying to be them, nor the literary award winner.  

My hope is that, in sharing my reflections, it touches someone in some special way. If is makes someone think, it has accomplished something positive. If it doesn’t, that is okay too. No one has to read it if they don’t want to.  However, I do get feedback that some of my writings touch people; honestly it is so special to me!  It is made more special because I am expressing myself as I truly am, as unfiltered as I can be.  Who doesn’t like making a difference in the life of others just be being themselves?

I challenge you to find your niche, that art form you would enjoy trying but

were afraid to do for failure.  Those things you have thought about finding time

for but know, if you do, you will not be the best, you will not be rewarded with monetary gain and maybe you won’t grab a mention from another soul.  Do it because it feels good, it spreads your wings in a new direction and that, in and of itself is liberating!

I remember a friend telling me she always wanted to be a singer. Her husband finally bought her a karaoke machine so she could be a superstar. Does she sing well, ah, that is a matter of opinion. She is not trying out for a reality show, nor singing on a stage. She is simply singing in her living room for herself. And when I heard her one time, it was invigorating!  Now it is your turn. 

Dancing PINK in the Street!

Living as a breast cancer survivor, I have developed a love of life beyond what I had prior to my diagnosis. I realize I am one of the lucky, blessed individuals who gets a second chance to live a fulfilled life.  And in lieu of that, each year, when Making Strides against Breast Cancer comes up, I am involved.

My motivation for volunteering is too many people I have known have not been so lucky. They are on a life path of dealing with metastatic breast cancer or have died.  I have friends that are  currently struggling through treatment.

My other drive is our youth.  Specifically, one little girl who has my heart, my granddaughter is at the forefront of my mind when I think of breast cancer. Seeing Ava so full of life and so unique, I don’t want to think something nasty like breast cancer could dim her light.

Ava is a dancer, this is one of the things in life she is passionate about! It is part of who she is, the love of dance.    From as far back as I can remember, she wanted to dance when music came on. With her involvement in a dance studio, Grandma gets to sit back and quietly watch the rest of the world soak in her charismatic personality which is even stronger than her dancing.

Thinking about this one day gave me the idea of having a dance flash mob.  Taking dancing to the streets seemed like a logical move to me in a city known for music.   And to promote breast cancer in this way was something I have seen out there in other cities, but never in ours.  What a cool way to draw attention to American Cancer Society’s Making Strides for Breast Cancer! 

Justin Jenkins was an easy choice for being the choreographer. His dancing is phenomenal and his background shows he is well accomplished.   Justin grew up in Memphis, TN and went on to MTSU for college. He became a dancer in the group Southern Movement Dance Crew which competed on the TV show Dance Crew.  He teaches and choreographs hip-hip at Diamond Academy of Dance in Mt. Juliet, TN.  Justin shares his love of dance, live and laughter with every one of his students. 

Kemmian Beard, a close friend of Justin’s was on board too for choreography. He was also a dancer in Southern Movement Dance Crew. In addition to his choregraphy and teaching skills at American Academy of Dance, he has started his own company, Kemmian Bearded Productions. 

Justin and Kemmian  took a group of 50 dancers from two different studios Diamond Academy of Dance and American Academy of Dance and brought them together.  They also enlisted the Titans cheerleaders to be a part of this dance.  What they created was  a moment in time that none of us will soon forget. And they created momentum for Making Strides for Breast Cancer in Nashville at the same time. 

What unfolded was so touching, especially when you know the story behind the scenes. Every one that was a part of this volunteered their time and their talents.  All were ecstatic about being asked to be a part of this, including the youth’s parents.  They had exactly two practices on a Friday night in a gymnasium to learn a difficult routine and make it look seamless to the public. A four minute hip-hop routine with the Titans cheerleaders involved and Austin Jamal Philips, a hip-hop/break dancer starting it off making this dance much more complicated than it looked.

On Saturday, Sept. 5^th, the Dance Flash Mob took place. Our dancers for this were scattered around the Bridgestone Arena plaza, where the Nashville Predators play, a big landmark for the city.  Amidst it, Kelly Clarkson’s song started with the Bridgestone DJ saying something to get everyone’s attention to the center of the plaza.  Austin Jamal Philips started dancing and spinning.  Four minutes of awesome dancing, smiling faces, the Titans cheerleaders dancing a segment all happened according to plan! And the dance ended showing everyone in Making Strides T-shirts with the hashtag of the event on the back of their shirts, #IGotPinked.

Social media was buzzing afterwards and because film crews were there at the event,  all major networks in the city talked about it in air that night.  We are hopeful there will be additional opportunities to discuss this event in the near future.  A great deal of work went into it and it deserves to have some continued momentum. 

My goal was to create noise.  Justin Jenkins, Kemmian Beard and the others they brought along for the ride did just that, and it was beautiful! Please support these two young men’s business ventures as they have selflessly given of themselves for this mission. They realize something I feel strongly about, life is not all about cancer, but every once in a while we have to come together, raise some money, Get Pinked and save some lives!   

Click to check out images of the experience: