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.