Can't Take Ugly Out of the C Word

Cancer does not discriminate who its victims are. From the young to the old, the doctors utter “You have cancer.” No matter how it’s said, the result is the same, an uphill battle with some unknowns. 

The lucky ones are diagnosed in the early stages where there is a high probability of recovery. Note, I did not say getting rid of cancer because, in many cases, that assurance just cannot be there. When cancer is not confined to one particular organ or cell groupings, it is hard for doctors to predict its spread and the long-term impact of its existence in the body. Nor can the long term effects of the treatment often be contained.

Therefore we are a society that seems to be plagued with hearing of loved ones, friends and neighbors getting diagnosed these days and wondering what lies ahead.  In the back of our mind is the over-riding question, who is next?  Will it be my loved one or me? 

The number of survivors continues to grow giving more hope that there is life post-cancer diagnosis. The re occurrence of cancer for those thought to have “beat it” which in and of itself is a bit of a misnomer, gives survivors fuel for fear. Yet, life is precious, perhaps more so for one who has waged a battle against the foreign invader already, cancer.  Learned is the principle one must go on, day by day, realizing the preciousness of a day in the life of ______.

And so must we all, even with the influx of stories of those affected and touched by cancer, move forward with hopes for cures. Be diligent in knowledge-gathering on the disease. But be careful to not become hyper-vigilant to the point where fear rules your day. Be compassionate towards those that are directly touched by cancer knowing their attitude towards the word and life has forever changed. Be supportive of efforts to fund research for better treatment options, early detection and eradication of the dreaded diagnosis. And at the end of the day, be grateful for the time you are given for far too many are gone too soon!

Written in honor of those who have touched my life with their diagnoses and challenges.

Why Ask Why

Some people ask me why I get political. Some people ask me why I got involved in the American Cancer Society after working as a Director of Corporate Development and then resigning my role after the stress of the position. Some people ask, why, after being a survivor of breast cancer, do I continue having the stress of being involved in either. I say I value life.

Getting the opportunity to work at the American Cancer Society (ACS) post cancer was an eye opening experience. I found myself the only staff member in Nashville that was a cancer survivor at the time.  It was a blessing and a curse to work for a mission after having a bird’s eye view of the devastation it wrecks in one’s life mentally, spiritually and physically. I thought the very least I could do is give back.

Thus, after forming a team for Making Strides for Breast Cancer while in treatment gave me a fresh start on my path to my work with ACS.  I was given the opportunity to be a headliner speaker at their annual Kick-off Breakfast at the Wild Horse Saloon that year in downtown Nashville.  I then made it my mission to not only work diligently for them but to learn all I could about what is being done to combat cancer in America. What I learned is that, next to the Federal government, ACS is the number one agency funding cancer research in our country. 

I discovered that the research that was done on herceptin, the drug that combats HER+ breast cancer, was funded by ACS. This type of cancer affects 20-25% of breast cancer patients. Prior to 2005, there was no known cure for this type of pathology. I had Her2+ so ACS was indirectly responsible for my survival.

During the time I worked at ACS, the Affordable Care Act had not been enacted. This was a time when I saw firsthand the effect of not having access to care for cancer patients. The effects were devastating and stories I heard and experienced first-hand have forever affected my attitudes, passion and compassion. I cannot abandon those that have died and suffered due to this lack of humanity.

I hear the claims of those without insurance are lazy, out of work and undeserving. I read the claims that they are without foresight of the possibility of having cancer and do not plan according. I also have heard voters say it is not their responsibility to pay for the sick that is until they are afflicted with the disease and suddenly struck with the realities of the healthcare system that bankrupts more people, medical bills, than any other cause. I too was hit with cancer prior to changes in the system.

Let me share some of my realities as I have been accused of living in utopia and not in the real world.  I have lived in the real world. Cancer is real. Treatment is hell, and sitting next to folks suffering without insurance is anything but utopia. Getting chemotherapy next to someone with limited insurance vomiting next to you because their coverage doesn’t include nausea medication is not pretty.  Having a younger brother opt out of treatment and going instead for radical surgery to avoid costs of lengthy treatment is very disheartening. Draining  portions of your limited retirement account is not a fantasy or a dream come true for anyone fighting cancer and we certainly were not expecting it to happen to ours. But that was our reality too. Cancer is costly, without insurance, deadly unless you are rich. 

So my involvement in cancer, in many forms, most notably ACS  is paying it forward and also paying it back. It is trying to prevent further tragedies of our country going backwards in terms of legislation.  I do not want anyone to experience what I saw and heard on the phone and in person, treatable cancer patients dying, patients suffering through treatment that could be avoided with the right kind of drugs and half-ass treatment due to limited insurance.  Children losing limbs and then also not getting prosthetics so spending a lifetime in a wheelchair. Or a single mother who had an 18 month old child survive cancer but because of the pre-existing condition was denied healthcare coverage for most of his entire life so had to pay all medical for him out of pocket! 

It is a misnomer that minorities are at higher risk for cancer. In the days when insurance was not as widespread as it is now, many got diagnosed at later stages. This is because they waited to go to the doctor till they were very symptomatic. At the later stages, cancer is harder to treat and more costly. With insurance, cancer is cheaper to treat because people go to doctors and cancer is caught earlier. It is also able to be treated more effectively. If you remove insurance, as it was when I was on the payroll at ACS, the amount of deaths from cancer will quickly rise and the amount of people that will be willing to enter clinical trials will diminish as side effects are not covered by trials but by your primary insurance so you need to be insured.  

My political activism wasn’t a choice in my mind.  During my time at ACS we were all encouraged, somewhat pushed,  to be involved with another branch of ACS called ACS CAN, CAN standing for Cancer Action Network. This organization is a cancer advocacy organization dedicated to making cancer a top national priority in issues, policies and laws in the fight against cancer.  I have been accused of looking at politics through high school eyes because I agree with the attitudes of this organization, which, incidentally are bipartisan.

Is this political or humanity?  Ask someone who has survived cancer, especially someone who knows someone who did not because of a lack of insurance.  Ask a woman who had breast cancer and could not get reconstruction prior to the law requiring insurance companies to cover it how they feel about politics getting involved in healthcare decisions and making mandatory coverage for all on issues like this.

None of us will live forever. None of us, I suppose, wants to. But we all deserve to live with a responsibly decent quality of life.  I live in a 55+ Active Community with 600 homes, most of which are Republicans supporting the GOP healthcare suggested changes. I am political for all of them.  The majority of the neighbors I have met in the past 18 months have pre-existing health conditions. If these conditions are not covered or are covered with exorbitant rates, these neighbors and myself will be lost in the system.  Their votes will backfire. I don’t want that for them, whether they realize it or not I am fighting for them, not against them or anyone else. Accessible affordable healthcare with changes made is a reasonable expectation in America. And since I survived cancer, I must continue fighting for it.

If you value something, you fight for it. I value the breaths I take, the moments in a day. Hence, I fight to live. I believe others have that right too. I am limited in what I can do but I will use my voice in the small capacity I can to make noise to stand up for cancer and issues that affect human lives. To not do so is to be self-absorbed and only care about my life and no one else’s. 

Call me a dreamer, but I’m awake now, no longer flat on my back in treatment. Call me an idealist but we are a rich country with a rich government making decisions for millions of Americans that can’t nearly afford what they can and seemingly having little say over something as significant as affordable healthcare.  There are solutions, there should be options and it should be inclusive not exclusive.  Cancer is greatly impacted by the decisions that are made in this area and this disease is like a domino in how it affects families, schools, communities, workplaces, finances, and the future. So yes, why ask me why?

Blessed are Those Strong in Spirit, Like Melanie Bannister

Chris and Melanie Bannister 

There are some stories you hear that you just know you will never forget and will forever be touched.  Some lives are meant to be that way, a life  that has far reaching impact beyond just the circle of family and friends. Such is the life of someone I just recently learned of, a woman in Allendale, Michigan. 

It starts out pretty normal like anyone else living in anywhere, USA.  Growing up, getting married and having children. But it goes horribly array in so many ways neither she, nor anyone else could have predicted.

I learned of Melanie Bannister from my cousin Connie Brown. Melanie is my cousin’s daughter-in-law’s best friend. She has been in the fight of her life, for the second time. She has been trying to put out fires now for years, her kids, her husband’s and now one out of control waging against her body.  Her loving husband is beside himself wanting her to enjoy a quality of life and yet understanding her need to always choose life, one more day, always wanting that extra moment with her children and her husband and her loved ones and friends. 

Those around her say that she has maintained strength through the adversity and a positive spirit through the storms.  Yes, you could say she inspires. But you could also say she suffers as her treatments make her quite sick. Her story is the reality of breast cancer gone badly, when it comes back with a vengeance and permeates other areas of your body. Metastatic cancer is a harrowing experience and no one deserves this journey, not Melanie, not her husband nor these four children. She is a soldier and for that, she deserves a few moments of our time to hear her story straight from her lips:

  

My name is Melanie Bannister. I would love for our story to be shared. I am wife to Chris Bannister for 17 years and a mother of 4 children. 7 years ago this October I was diagnosed with Stage

2/3 Invasive Lobular Carcinoma. I went through aggressive chemo and radiation, as well as a double mastectomy. I was regular about going to every checkup appointment.  I had a total of 6 PET scans after and I was all clear of the nasty breast cancer.  We thought that would be the last I would ever hear of it for me. 

Almost 6 years later to the day I was diagnosed with Stage IV Invasive Lobular Carcinoma.  I was told the cancer has metastasized to my liver, lungs, uterus, ovaries and bones. This was one year ago. The first step was supposed to be putting my body into menopause and then starting a targeted chemo pill that is specifically for my type of cancer. 

Unfortunately, my body did not respond well to going into menopause and the insurance would not cover the pill unless it did. With the cancer multiplying fast in my liver and bones, my oncologist decided on IV Chemotherapy Ixempra. Due to the neuropathy of side effect of this treatment, we discontinued it in July 2017 and have moved on to Gemzar. For the rest of my life I will be on some form of Chemo to keep me alive. Although the side effects are bad, if this is what I have to do to keep me here for my family it's better than the alternative. 

Due to everything involving our family, my husband Chris has had to take unpaid leave to help care for our children as this process at times has made me very sick and weak. 

Chris also had to go on short term disability due to having a fracture in his neck fusing 2 vertebrae together and be off work for 6 weeks July of 2017.

My children are so important to me and there are challenges with them also. Our oldest daughter Alexis is 22 years old and was born with Cytomegalovirus. She, in turn, has Cerebral Palsy and is severely multiply impaired.  Alexis requires full time care 100% of the time. Her conditions have led to many hospitalizations and surgeries over the years.  When she was only 7 years old, she was left in a coma for a full month and again 2 years ago. At that time, the doctors were not sure if she would pull through it or not. By God’s grace, she did!  Alexis cannot eat by mouth but we will take that because she is here with us.

Our daughter Kyleigh is 17 and was diagnosed with a rare blood disorder, Acute Intermittent Porphyria when she was only 7 years old. My husband Chris also has this rare blood disorder.  Stress is a huge trigger for this disorder and can have either of them down for days at a time requiring hospitalization at times T

Our son Noah was born with Ocular Albinism, a rare genetic disorder of the eyes and is legally blind.

Our youngest is Caleb, 9 years old, healthy but way too young to understand or remember what mommy went through before or perhaps to grasp all of this in our family. This is very new for him this time around. Caleb still has his good and bad days of worrying about me.

This will be a long uphill climb for our beautiful family. But, we can do this together because I know God has our best intentions at hand. This is our normal. God has blessed us because He knows we are strong and together we can get through anything.

We are truly blessed. Yes there are times where I ask why?  Why me?  Why us? What did we do wrong?  But I know that it's nothing we did wrong. It's because we are blessed and we are strong!!!

There is much to be learned from this young woman's story. Could you endure this kind of hardship and be strong in spirit, love and faith?  With all this adversity, she still stands as a beacon of hope for all those around her as she fights for every single day she can be alive, just for one more moment to spend with her husband and children.  This woman and this family has many many needs. I pray more people hear her story and decide to help. If you are touched by Melanie, please share her story. Her GoFundMe page is for a family that can use the support and is worthy of all of our contributions. Bless all of you for reading this and most of all, Melanie and her wonderful family!  Click here to show your support for this brave woman!

Loving Watermelons - Is it Bad?

How exciting to find out watermelon is great for you because I love eating it! For

years I avoided indulging on this favorite because I thought it was consuming way too much sugary water. Now I feel completely justified in eating away and s will you. 

Do you know more people get sick in the summer from dehydration than about anything?  Watermelon is 94% water!  And if you love it, stay hydrated by eating it!

There is so much vitamin content in this fruit, also classified as a vegetable. It is loaded with Vitamins A, B6 and C.

It also contains lycopene, more than in raw tomatoes. Of the produce family, it has one of the highest levels.  This little know nutrient, lycopene,  is taken by people who want to prevent hardening of the arteries, and cancer prevention, specifically prostate, breast, lung, bladder, ovaries, colon and pancreas! . It’s benefit in reducing risks of cancer is because it helps fight the formation of “radicals” that are known to be strongly linked to cancer. Lycopene is also used to treat some HPV infections which can be a cause of uterine cancer

Lycopene has anti-inflammatory properties too. Watermelon is known to help with muscle soreness.  It is even linked with bone health.

Watermelon has antioxidants, amino acids and a small amount of potassium in it. The benefits of these three are more widely known by the general population. This is why it has a distinction of being classification a Super Food. The benefits of eating watermelon are an extensive list indeed.  

Over the years, so many spit out the watermelon seeds, perhaps afraid one

would grow internally! LOL!  Actually the seeds are quite beneficial to eat.

 Vitamins contained in them are B, potassium, magnesium and zinc. Also, it is known for being a good source of healthy fats, protein and fiber.

It is a misnomer that there is such a thing as a watermelon diet. However, eating it cleanses your body and helps you lose weight at the same time. It contains only 6% sugar. One cup of watermelon is 47 calories.

Watermelon is the #1 consumed melon in the country. If you aren’t on the bandwagon eating watermelon now, you are short changing your body!  Eat up and spit out the guilt! 

Save a Life Thru Social Media

Can you impact cancer by sitting in front of your computer?  If you use social media the answer is yes.  Will it make a huge difference if you do nothing else but send out messages? Without a doubt, affirmatively yes!

Celebrities are now publicly stating that they have a diagnosis of cancer.  This use to not be the case as  there was too much concern it would hurt their careers and that they would not get hired. Plus, going through treatment is hard enough without being scrutinized by society and media. 

Organizations have popped up, large and small to try to change that by making information readily available and seeking better treatment options.  Many organizations spend thousands of dollars doing this and trying to create support systems and change laws for better treatment options.  Research and recovery rates have improved.  Too often, in the past, cancer patients didn’t have enough assistance once they received the diagnosis so they chose to not get treatment. 

Still support can be lacking for many who receive a cancer diagnosis. Far too often people react as if it is contagious or they prefer to not be around the disease. The American Cancer Society has made "Hope Houses" across major cities to help patients have a place to stay for treatment close to cancer treatment hospitals because too many are left helpless  with no one willing to help them out. 

Even within a patient's circumference of family and friends, many are fearful of what to say so chose to saying anything and stay completely out of touch.  At a time when a person needs these people front and center in their lives the most, support is gone.  This increases disappointment adding to the sadness of the disease, which is not good for recovery of the disease.

This is not true of all patients though. Some have a wealth of support from family, friends, and other sources.  The ones that are lacking the support is a larger segment of the population than most realize.  It is surprising too, when cancer has become so prevalent part in our society. 

More and more celebrities have had exposure to what is going on in the world of cancer, to the lack of support, to the number of diagnoses and the impact it is having on American families. By visiting cancer centers, helping with Make a Wish foundation requests and fielding letters, they hear the heart-wrenching and the hero stories of fight for survival stories.  And, in return, many are beginning to share their own stories, to show their courage.

Cancer is a personal struggle, very intimate.  To share it outwardly in the public eye is very hard, especially early on, when you are dealing with it yourself.  It is commendable, these celebrities that are willing to literally jump outside their comfort zone and share this experience with us all.   Their stories, their experiences, and the cancer becomes top page news.

No one may care about the mother of two young men named Julie who lost her

battle with cancer a few years ago and left two boys just starting college living in Franklin, TN but they do care about Farrah Fawcett, the woman they grew up watching on Charley’s Angels.  No one really knows, nationally, of a driven woman fighting a lifelong battle with an endocrine-type cancer who started a few years ago a National Research Organization with a top renowned doctor working in this field but they know of Steve Jobs who died with the same type of cancer.

The list goes on of celebrities with cancer who have told their story to all of us; fans of Sex and the City know of Cynthia Dixon, fans of Ted Kennedy in politics, fans of Patrick Swayze from Dirty Dancing. It has become more the norm to discuss cancer, all types on the national scene by celebrities in the media.

I worked at the American Cancer Society (ACS) offices in Nashville, Tennessee and Memphis as the Director of Corporate Communications. Several years later, I began working as a volunteer in social media for some of the event programs, recruitment for a large scale research project and Making Strides for Breast Cancer.  I saw, firsthand, internally and then externally what happens when a celebrity goes public with their cancer diagnosis.

 Internal staff are immediately notified and kept updated as to what is in the media about the celebrity. The reason is that phone lines and social media go ballistic!  The volume of calls and communication via social media and such for  questions, requests and concerns skyrockets.  Individuals contacting the organization now care deeply about cancer, either about themselves or a loved one after hearing the story. It is truly amazing to experience this firsthand! 

Sometimes it is not even about the type of cancer the celebrity has, it  is the fact that cancer is in the news.  Cancer awareness is in the forefront of everyone’s mind, and for the moment in time, that split second, it is okay to talk about it at length, as long as it remains in the news.   The more times the media makes a release about a celebrity and the volume it is tweeted, shared on Facebook, put on Google+, Instagram or wherever, the busier the offices are nationwide, in particular the 800# and hits to the website.

The effect this has on cancer is incredible! Being proactive is key to decreasing the odds of being diagnosed and to early diagnosis. The sooner a person is diagnosed, the easier it is to treat it and the greater likelihood of combating cancer. Everyone benefits. The more information a person can receive from ACS free of charge, hopefully the sooner they can get on with the business of living.

What you can do is promote that information, when a celebrity announces their diagnosis? Pass it out to your network of contacts!  Unfortunately everyday stories of the common person don’t always have the impact.  Read the message from the celebrity first, become informed. You need to know the story to share it.   The reason a celebrity is forthright in telling their story is not to increase their notoriety but to promote public awareness and save lives.  You can help their efforts as we are all in this together.  

Remember that one click is usually never enough to get people to pay attention. Take the time to push these stories out, over and over again. Your click may save a life. Isn’t that worth something? Perhaps it may be someone else’s click that saves yours! 

American Cancer Society    

800-227-2345   800-227-2345

800

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

You Can Still Make Me Smile

A man is defined in life by what other people say about him. That is the theme of The Christmas Carol. His self opinion matters not if noone likes his character and what he professes to say about himself has no merit.  A indelible impression a man leaves with those behind is not how he lives on this world but how he makes others feel about being here, about their choices, their opportunities or lack of.   Did he try to help other people during the time God gave him to do so?  Was he someone who gave others guidance or try to make the world a better place in some small way?

I met a man years ago with one of those beer belly laughs.  You didn't have to know what he was laughing about to find the joke funny.  As soon as you heard the laughter from

across the room within your earshot,  you were  laughing too.  His smile was from ear to ear and it lit up the room!  He enjoyed making everyone happy, sincerely loved it. He was one of those rare individuals who knows life is short lived, make the most of the time you have here.  His smile has taught those around him all they need to know about life. Enjoy it immensely!

Funny how some folks, on the service, seem like they don't take much of anything in life seriously.  This friend is one of them.  I suppose some people who haven't taken time to get to know him may take it for granted that he takes life very light-heartedly. But don’t be fooled by a  jovial spirit and carefree candor. Sometimes these people can be the ones God has created that are testing us all.

Yes, these are the few that inside the smiles and twinkles in their eyes have the hearts of gold, the spirits that are kind and forgiving and the ability to care unconditionally.   They can be the ones that can carry a cross, fall down with it and laugh getting back up.  Oh, can you  be in a crowd, and keep moving forward with a grin inspite of being in emotional or physical pain?  Many of us cannot, preferring to shy away from others and certainly not offer hope when we are hurting ourselves.  But not this man, he finds some source from within to offer something to others in pain regardless of his load in life. 

There is nothing wrong with pulling away from others when you are hurting and needing to to take care of yourself. But it can be done to an extreme where isolation occurs and that is not healthy either. It is important to know when to ask for help from others also. The strong man, of devout faith, knows when to do this. My friend does.  He knows also to first go to God. 

When others would sit in sorrow as not having the freedom to walk as they would like, the luxury of being self-sufficient, he will not succumb to a disease. No, he pushes with what strength he has, he is a living example of a man with determination.   A strong man does what he needs to do sometimes to show the world you can still get out and be human even if it means riding in a scooter or being wheeled in a cart. On a bad day, he will stay in and be sorrowful and on an okay day, he will get out and soak up some sun and listen to laughter and inspire some others.  Being a man is giving yourself the permission to have humility when you need it and allowing other people in your life to give you gifts of service. It is also giving those that care about you the joy of seeing you alive, even if it is not in the full range of motion you once were. 

Many weak-hearted people want to give up when the going gets tough.  Living life at half-mast, when your limbs are not working well,  and pain becomes an everyday occurrence is jolting.  How do you transition nicely into this?  My friend is a living breathing role model of a man who has done just this with strength of character, compassion for others and love of life.


When I see him, I still see the comedian there. He finds humor in little things every day. He

even laughs at himself, his own frailty. He doesn't ask, nor does he want any sympathy. He does want, I think, understanding so as to widen the knowledge base of the health condition for others and for his family.  But as for him, he takes the good moments when he can get them. He loves and soaks up positive energy from where he can obtain it and still manages to give it off in so many ways, it is simply astounding.

No longer does my friend stand up to tell a joke. No longer does he walk in circles nor talk loudly as his voice is weaker.  But the strength he possesses as a man has grown tenfold over the years.  He doesn't stand in the center of the circle when activities are going on these days, preferring to sit on the outskirts now and simply observe as if he is on the sidelines of a football game. It is definitely teaching a lesson to many around him that enjoyment out of life can be from sitting back and soaking it in, you do not have to be actively on center stage.  

Some days I worry that my friend sees himself as weak when he is so strong.  God is using him and he is walking through the plan prepared just for him.  I imagine he is getting high

praise for it as I write this because I see all the signs there.  Even on his darkest days, he has the ability to be caring and compassionate towards others.  What a gift.  True to the first time I met him, he has retained his unmistakable quick witted sense of humor that can take you by surprise and leave you with that what did you say look on your face!

He is easier to overlook in a group than before but I pity the fool that does so. Simply because a man can't stand or shout does not mean he doesn't posses the richest gift we can gain from this world. Have you figured out yet what that is?

The truest testimony to a man is the value people around him place on his friendship and life. My friend is treasured by his family and loved ones; it is in his daughter’s eyes when she looks at him.  So apparent, the love in her eyes.  Everyone that knows him well cares about him. His jokes and laughs use to light me up. Now I get that from just being near him or hearing he is having a good day. I am, like so many other lives he touched,  forever changed.  

Dedicated to my dear friend John Petty.

Fight Cancer Before You Get it, Be in This Study!

Are you waiting to care about the cause of cancer till you are directly affected by it?  Many Americans are.  They are happy to put a donation in an envelope once a year and be on their way.  This year the American Cancer Society is starting the third and final phase of their longitudinal research study on preventing cancer.  This study has been done in the past and has given society some of the most memorable breakthroughs in the fight for lowering diagnosed cases of cancer. Discoveries such as the link between obesity and cancer, the benefits of physical exercise, and the link between cigarette smoking and lung cancer, just to name a few.

The population used for this research is diverse and the length of the study is over twenty years.   All participants have no personal history of cancer other than basal or squamous cell skin cancer.   And, the men and women that participate must be between 30 and 65 to be eligible.  The commitment is long term but the benefits are enduring forever.  Saving lives is priceless, valued at more than any check that can be placed in an envelope.

And yet, so few are willing to volunteer the 30 minutes needed to go, one time, to a site location to give blood, have their waist measured and pick up a registration packet.  After that one and only inconvenience, all surveys are done by participants in the comfort of their homes, either in written form they will receive by mail or via the internet. This is so much less intrusive than going through chemotherapy or radiation.  And yet, to help prevent others from getting a cancer diagnosis by having more breakthrough discoveries, it is still hard to get otherwise healthy individuals to sign up to participate in this important project.  

Some staggering statistics follow:  12 million Americans have had cancer, including those currently in some form of treatment as of December 2012. Our survival rates are dramatically improving, especially in certain types of cancers but we still have over 1,500 people a day die of cancer in our country. Cancer is the second leading cause of death in the U. S. only exceeded by heart disease.  Cancer is responsible for 1 out of four deaths.

Please consider participating in a study that takes little time or effort.  Simply one appointment and every other year, filling out of a survey in your home is all that is needed.  Do you can find the time to drink a pop, eat a pop tart, or surf the internet?  If you do, can you likewise, find the time to participate in this study called CPS-3 that just might one day lead to a break through discovery to save a life, possibly yours?

Visit cps3nashville.org  for more information and to register for the study. 

TABOO - Is Breast Cancer a Dirty Word?

It has been a long time since I have curled up on my bed and thought long and hard about what is was like to be there suffering through chemo. Last night I did just that.  I came home, after being asked to leave work early and laid in my bed in the dark just reflecting on that period of my life. Sometimes it seems like eons ago. Other times, it seems like yesterday. It reality, it was five years ago.

I was told at work last night, after less than a week of working at a high end women’s fashion store that being a breast cancer survivor is something I am not to share with anyone. Being a survivor is something other women see as very sad, depressing and is not pretty.  A customer I assisted this week had a pink survivor bracelet on and I congratulated her on her recovery.  She told me she was a two year survivor and had just had her reconstruction completed from her double mastectomy.   The manager did not care to hear any of that; she said any talk of breast cancer is totally unacceptable. No one cares whether I had cancer or not and there is to be no talk of breast cancer in the store.  Breast cancer is sad, depressing and does not make anyone feel pretty. We are in the business of making people feel happy and pretty. If people don’t feel that way, they won’t spend money.  I want sales in my store and for that to happen, women need to be happy.” 

She made it quite clear I am not to mention to anyone ever again that I am a breast cancer survivor.  This discussion took place in the back stock room right after I got to work. All the other employees in the area were quickly told to leave the room as it was obvious I was going to be talked to in private by the big boss.   There were two other items on her agenda discussed but this was the item that really took my breath away.  Quite honestly, I was shocked.

I was told that the effect of me mentioning breast cancer to her business was that it would create a negative spiral and cause no one to want to shop in the store if they knew a survivor worked there.   I am to only talk about the clothes in the store.  She spoke as if I stand around and talk about breast cancer on the job for hours.   No one there knows anything about my battle, not the type I had, where I had treatment, where I lived when I was diagnosed, etc…because I have never discussed a single aspect of it with anyone, including a customer.  

She went on to warn me that my hours will be cut if I am heard bringing up this subject again.  Eventually she would have to let me go, as in lose my employment.  Breast cancer is an ugly thing.   Women will walk past her store and not come in.     She continued to educate me on how she feels the other half of women see breast cancer, seeing women like me as sad and feeling more like what she described as pitiful than compassion towards a survivor.  Customers will then, according to her, not feel beautiful being in the store or want to buy clothing there and will leave not spending money.    She will not stand for me affecting her sales.  Cancer is ugly.    It doesn’t seem to matter that there are signs all over the store about her corporation sponsoring hope for breast cancer, even selling Hope T shirts benefiting breast cancer.    Or that this store is for women, a disease that affects women.

This was repeated to me countless times.   I suppose she thought I had a severe case of chemo brain and wanted to be sure I heard it all correctly and it stayed etched in my brain. I have never, in five years, been made to feel so unclean and ugly as I was last night about the fact that I had breast cancer.   No one has ever looked me straight in the eye and actually said to me that nobody cared that I had breast cancer. Though I know that is not true as I have a wonderful support system, the sting of her words burns in my memory and heart. I find tears stinging my eyes even now when I think of my friends that have died and those that have fought to survive this dreaded disease being cast in this ugly group with me. 

I pride myself on having a positive attitude.  I can’t believe women would discriminate against other women simply because of a disease no one asks for.  But yet, it does exist, in a high end women’s clothing store in mainstream America.  Odd too that it would occur in the South where the disease is even more prevalent.   I had a conversation with only one other customer at this store about breast cancer.   This woman was in the store trying to buy a Hope T shirt in the size large as she could not find it at the other store location.  I asked her if she knew anyone that was affected by breast cancer.  She responded with who she knew.  I told her I was a survivor also and thanked her for her support.  I asked her if she was walking the Komen Walk and when she responded no I simply said thank you for wearing the shirt to show your support.  

However, during this exchange, a young twenty-five year old employee and another employee close to my age were standing idly by as it was slow that evening,  apparently ease-dropping on the conversation.  They must have heard something they found offensive and reported it back to the manager that I had indeed admitted to a customer that I was a breast cancer survivor.  That preempted the need for me to be reprimanded even though this woman was in the store for no other reason but to purchase the shirt for breast cancer.

I think what  I found the most upsetting was her general attitude about breast cancer. It was a reoccurring theme of it being ugly. Yes cancer is ugly,  but to imply that the women who survive it  are somehow perceived as ugly individuals and would somehow discourage other women from wanting to be around them  as it would interfere with their ability to feel beautiful is short sighted and unfair.  Furthermore,  to elaborate and state that women would actually avoid shopping at a clothing store to avoid being near a cancer survivor employee is just plain outrageous.   That mentality went out  years ago; cancer is not contagious.   Her concern is dollars in her store, nothing else. And for this conversation to take place in October, Breast Cancer Awareness Month when the whole country is focused on awareness of one of the top medical issues we are faced with, how hypocritical.  She does not want to know if her customers are survivors, she just wants them spending money. Where is the heart and soul of the business model here towards the true inner beauty of a woman? How can you make a woman beautiful if you are unwilling to unleash her inner beauty also?

Today, I simply retreated, much as I did when I was in treatment.  My objective today was to digest how the world views me, a breast cancer survivor. I am not happy I had cancer, I did not want it, I am sad I had it.  But I am glad, in particular, I put the survivor at east, earlier this week,  in spite of the pain it caused me later in the week.  I am glad because her recent surgery was indeed painful, emotionally more so than physically. She needed to hear, from someone who had been there, right then, at that time, while trying on clothes, she was indeed beautiful. I suppose, in some ironic twist of fate, God put me there. And how twisted it is  that Saturday night I am sitting at the same store, in the back stock room.   Essentially I was being told for the same reason, because I am a breast cancer survivor and revealed it,  I am a deterrent, somewhat ugly, for anyone wanting to shop there.   I am blessed I told a woman the complete opposite earlier in the week on the other side of the wall.  

Earlier in the week, when this one customer told me she was a two year survivor, with that hopeful look that I would understand, I simply said five years for me. We shared that knowing look that says, ‘been there, done that.’ I told her what every women wants to know that has been to hell and back, “You look beautiful.”     I congratulated her and told her she looked awesome.   And we hugged.  

As the customer, a survivor,  stepped back in to the changing room, I was waved up out of the changing area by the assistant manager quickly.  She pulled me over to the side and said urgently, “Do not get close to the customers at all.” I explained to her, the assistant manager, that the customer had whispered to me she just got her final surgery complete on her reconstruction work.   She was a breast cancer survivor.  It didn't matter to her what the customer was going through, she did not want me talking about anything like this.  It is this mentality that this topic if foreign to them and not pleasant. 

It was apparent this assistant manager was upset by her demeanor.   Maybe when you have not walked the road of cancer, you cannot relate to how life changing it can be.  Or maybe you don’t understand how easily survivors naturally bond.  Having a support system when you are out there, trying on new clothes with a new body was wonderful Godsent for this lady. She had her new breasts in place and I was there for her, to stand by silently and give an honest opinion.  She knew I had been where she was just a few years before, without us exchanging a word.  She bought a multitude of clothes that , over $750.00.  

Incidentally, when the customer went to pay for her purchase, the assistant manager would not allow me to ring out her sale at the register. It was my customer and we are paid commission.  The assistant manager took the entire sale as her own. I suppose she was punishing for the exchange about breast cancer. 

Sales numbers and dollars are the only figures my supervisor, soon to be promoted to the district sales manager is concerned about. Here are some real hard numbers to look at also.   2.9 million and 18 million. The first number is how many  cancer survivors there are as of June 2012 in the United States according to the American Cancer Society and the second figure is the approximate number there will be in 2022. Among female cancers, breast cancer is the most prevalent with 41% getting breast cancer. The national norm is 1 out of 8 women get diagnosed.  The single largest group of cancer survivors is breast cancer survivors, making up 54% of all cancer survivors. That is a sizable percent of the buying population. If this manager, soon to be district manager of a female clothing store is correct in her assumptions, this organization is surely in for some rough times ahead!

I suppose I should caution other breast cancer survivors out there to not share their success with others in the work place or run the risk of being reprimanded. But, I leave that up to you to decide.  I will never open my mouth again without hesitating.   The look in her eyes, of total lack of compassion, was unfathomable to me. I had just come from walking the Susan  Komen walk.   I always knew I was prettier before cancer and here someone was pointing it out to me loud and clear. 

Sometimes, as a survivor, you think you are invincible, on top of the world. Then something happens and you feel knocked back down. Usually it is another cancer scare.  I never dreamed it would be a callous comment that would send me reeling.   Last night, I felt hit by a boulder that left me taking a critical look at myself.   At least at first it did.  Now not as much so. 

I hope other women that haven’t had breast cancer don’t look at breast cancer survivors like these three women do.   I pray they don’t.   I wonder, if this attitude is reflective of their company as a whole or just the individuals?   Actually I pray breast cancer survivors are not thought of as ugly, sad pathetic individuals who are bad for business and bring sales down for women’s clothes.  Fighting cancer is hard, is it fair we should also have to fight misconceptions after the fact that are groundless?  Please don’t prejudge us. 

It is hurtful and unfair to be judged based on a diagnosis for anyone, no matter what the diagnosis is and not for who you are as an individual.  Breast cancer does NOT define the person; it is a disease, treated and they hopefully conquered. 

I am strong.    I am a survivor. I will not be silenced.  If I was meant to be, God would have taken me. And yet, I am still here, still standing strong.