We Need To Talk About My Being “Back”!

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We need to talk about the word “recovery” and “my being back on Facebook.
And because I was too sick on November 10, Carcinoid Cancer Awareness Day.

I am truly grateful when you leave your well wishes and I feel the outpouring of love when I take nosedives with my medical problems. They are many which are serious and a few can be deadly. One thing is clear, they are all “managed” , not one has any cure. I have an oncologist who has more than a cursory understanding of genetics. For those of you who missed my blog, I began my life in my mother’s womb as a conjoined twin with my sister dying inside my body , making her a “parasitic twin.”. Unlike the majority of people who have this phenomenon I did not have physical deformities. What I did get was many genetic markers that predisposed or outright caused a vast number of health problems. All are described as “invisible diseases”.

Carcinoid Cancer, is often described as cancer in slow motion. It is very rare, there being about 115,000 of us in the US population at any given time making us less than .04% of the population. On average it takes five to seven years to get a correct diagnosis. I have many in my Facebook support groups who have lived more than twenty years since being diagnosed and others who die quickly or suddenly take very bad or very good turns. Almost every one of us at some point is told to get our affairs in order. I did that out of common sense back in 2004.

We don’t look like most cancer patients. We look “so good”. Something, we all hate to hear. You may mean it as a compliment. It just invalidated the very real and terrible experience I am having with my body. How I look has zero bearing on what is happening to my insides. And to be honest, as I edit all photo’s of me, using art edits  it changes how I actually look. Along the way I had surgery that removed one third of my left cheek. The surgeon warned me that my face would become more and more asymmetrical as time went on. I no longer worry if my eyes match or if one side leans more than another. I do put in a prosthetic in my mouth because one of the rarer things Carcinoid Cancer does is break your teeth. Then you have to fight with doctors , anesthesia and never take anything with epinephrine in it to just get the remaining teeth removed and a set of dentures.
Something that might actually happen in 2017 for me.

Steve Jobs died from the liver form of this cancer. It is particularly nasty. He was diagnosed in 2004 and died in 2011. Almost every article you will read at the time of his death does not include that this was Carcinoid Cancer, because initially Steve Jobs didn’t want to tell anyone. While I understand his reasons, it gets compared to other faster growing liver cancers and it skews what we know. It is very normal to live that five year marker used in all cancers as a success rate. Meaning if you live five years past diagnosis, you are a success. It’s an absurd definition. Most people with Carcinoid Cancer live five years past diagnosis. Steve Jobs had the money to get the very best treatment, the very best doctors , including anything that was approved outside of the United States or alternative medicine. He still died. Dr Gene Woltering, one of three true experts on this cancer begins all consultations telling you that this cancer is incurable.

I was diagnosed in 2004 with this cancer known by the following names, Metastatic Carcinoid Cancer, Neuroendocrine Cancer or NETS Cancer and the even rarer syndrome, Carcinoid Syndrome that can accompany this cancer. There is more than one syndrome and symptoms are much wider and more varied than any article you will read on the web including the one on Carcinoid.org. This cancer has very few commonalities that cross all patients. We are told that each of us will have very different problems and this is highly individual. The syndrome allows hormones and peptides to be emitted through the tiny tumors throughout my body and cause a host of very unpleasant and sometimes debilitating problems. None of which can be halted through normal medications because they are not coming from the normal organs in the endocrine system. There were years that I was bed ridden even while being on Sandostatin. There were years that I could do much more within the limits of the other diseases and medical problems that I also have. These past three years have been day by day. The past three months it seems hour by hour. If you see me here one day, it does not mean “I am back or in recovery.” It means I am back for that post at that time. Not all of my health problems are related to my cancer. I have a variety of syndromes which is a catch all word for a cluster of symptoms that no doctor really understands but will treat each symptom with an onslaught of drugs if I let them. Which I don’t. I have vast herbal knowledge. It’s being my grandmother’s granddaughter that made that possible. Starting as a conjoined twin, may actually be slowing the cancer even further. It seems I have very slow cell growth in general and the cancer cells are no different. It isn’t slowing any of the syndromes. And tachycardia, is not benign, nor is very low blood pressure. Even Intractable Pain Syndrome is shown to alter brain chemistry in the same region that opioids cause alteration to brain chemistry. Yet, no opioids work on my day to day pain that begins at a 7 on my very best days. So, I take no opioids save a very small dose on days I go beyond that 7, known as breakthrough pain.

Add in Fibromyalgia, Seizure Disorder and Dystonia and I refuse to allow doctors to make one more pathology diagnosis.

So, when you see me on Facebook, know I delighted to be back to read the few posts I can get to and the few I can make. I am not in recovery or back, except for what you see at that time.

I thank you all for reading this . This is a very basic and broad overview of what is a complicated cancer that requires me to learn medical terms and practices that makes me regret not going to medical school though I loathe medicine.

My thanks and blessings to you all.

Bridget Robertson

Dedicated To All ZEBRAS!

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The mascot for NET Carcinoid/Carcinoid Syndrome is zebras. I belong to three Facebook NET Carcinoid/Carcinoid Syndrome groups. Not all Facebook space is created equal. I have found that which can be elusive for some people, real support and help as I enter what I call “The Holy Gates” of my Carcinoid groups. Some make posts, others comment at times, for whatever reason, at times people just read through the many threads. I promise, I can feel each and every zebra no matter how much or how little they actively contribute.

When one of us is accepted into a new drug or treatment trial or has a successful procedure we all celebrate. I know some people believe Pharma and doctors are only in it for the money. I know some think modern medicine gets it wrong. Please consider, that when your very life is on the line, even previous held beliefs matter much less than being given options. So, I cheer every zebra, no matter what they choose. If that is where they see their best chance, I am behind them all the way. If one is going to an ER for any one of the many serious problems that comes with this cancer or syndrome, or are scheduled for a difficult procedure(s) or having hard times, the herd will hold them up. When one dies, we all mourn, even if we don’t know their name or the details. Boundaries are respected and no one judges where you are on your journey. There is always an outpouring of care and compassion as we wind our way through the pain, procedures, tests, unknowns and the medical systems throughout the world. We light candles, say prayers, share our experiences, get resources, find ways to better our lives and bless each other everyday.

We are a diverse and worldwide zebra herd and family. We also have many shared experiences. Many have other illnesses besides Carcinoids. Most have had to fire several doctors along the way. I was officially diagnosed 10 years ago this month. I have had NET Carcinoid/ Carcinoid Syndrome for far longer than that. I have had other illnesses since my childhood, since birth. A few decades back I had a some good years. All. In. A. Row. These days I look forward to having a good day. Heck, I’ll take several hours strung together. My diagnosis came by way of a dermatologist working to eliminate my stubborn and extreme “Rosacea”. I was certain that while painful, it was a minor problem. He mentioned that he had heard of something called Carcinoid Syndrome and thought it was a gastric condition. My gastroenterologist, had been unsuccessfully treating me for “IBS” for over ten years, because it wasn’t IBS. It was all part of my Carcinoid Syndrome. Fortunately, the dermatologist ordered my first 5HIAA. Just one of a long list of tests I had and have done.  It would be months before I even got to see an oncologist. Like many, my journey has had its fair share of difficulties. My first really big hurdle came when a new insurance plan denied coverage for my treatment after I had been receiving it for three years, saying it was unreasonable and without a specific pathology. My oncologist who while claiming to be an expert in Carcinoids, was not, shrugged and said there was nothing he could do. He was retiring. It was only after quite a bit of time and when I got a new primary care doctor, that treatment resumed. He was more of an expert than any doctor I had met to that point. He knew, and was the first to tell me, that Carcinoids was NOT benign and that having an unknown primary did not change the fact that this is a very serious cancer that could spread ( metastasize) anywhere. He filled out, in detail, extensive insurance forms and wrote in depth letters. I got my treatment back. He and one other doctor helped get me a few new doctors. He is also very rare in the sea of medical professionals that we zebras must wade through to get diagnosis and treatment.

While I understand the wisdom of taking control of your health, medical systems are designed to make compliant and quiet patients. I suggest reading Jean Shinolda Bolen’s book “Close To the Bone” to get an accurate description of how that plays out. We are rarely those compliant patients. We question doctors extensively. We change doctors when needed. We spend our days looking over information, researching on the Internet, getting data, learning medical language, getting reassurance and advice from each other, looking for any alternative treatments and doing every spiritual, and emotional healing practice that we find useful and palatable. We are very informed patients on all manners of healing. We are also making our lives as rich as possible. We do what we can each day to be about the business of living.

I never forget that I am very lucky. I have a spouse who loves me and tirelessly helps me with what would be simple tasks for many people. I have friends and family that respond to my posts and blogs with a great deal of encouragement, compassion and even fantastic humor. They see all of me and accept my diseases right along with me. Some zebras never tell anyone, anywhere about their disease especially on Social Media. Others make posts that get no response. We, zebras work to understand. We know that people want happy, positive posts. We know some will be irritated by our updates on our health. We know our disease frightens some. It frightens us too, along the way. And we don’t have a way to disconnect it from our bodies. Most all of us zebras have had people disappear completely without giving any reason, including family. We feel the real sting and hurt when that happens. I have to say this is a flaw of mine. I am not one to forgive people who walk out on sick people. I don’t mean just me. I mean anyone who is sick. Nor, do I apologize for this flaw. I don’t intend to change it. If others want to forgive…feel free. You MAY have better angels than I do. I have no patience for this behavior.

I would ask that today to think about NET Carcinoids which is rarely given much attention. Also, consider everyone including yourself, if it applies, that is having to cope with chronic and life threatening illness. Be gentle with the sick. We are not lacking positive thoughts or vision. A post that Clarrisa Pinkola Estes made recently on Facebook went into great detail asking everyone to withhold judgement and speech about simplistic “cause and effect” or blaming sick people. We all know that some who do all the healthy things, are generous and kind, still get sick and die young. We all know a few who do everything unhealthy, can be mean, selfish and horrible who live well and into old age. I avoid simplistic answers and ten second memes that spout them. I think people are more complex. I think the “cause” of most things is complicated and multifold. And please, if you need support, I encourage you to join a group that does just that. I consider my fellow zebras and our groups “Sacred Ground”.

I also want to thank all of you, my friends, family and fellow zebras. Sometimes I get exhausted, angry, bitter, feel bewildered, betrayed and occasionally despair. It is often the simple gestures that matter most. Many of you pm me songs, stickers, pictures, wonderful messages or leave a comment on one of my posts. I hope to start Skyping with many of you soon. Sometimes those are the only things that get me back into my warrior spirit. On the days when I can do the whole FB thing….I love your posts. I want you to know how many talented, funny, brilliant, beautiful and generous people I know and call friend, family/zebra.

Blessings to everyone,

Bridget Robertson