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

Something much harder than cancer will happen.

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“You have cancer”

More than once in my life I have heard these words. Everyone from my beloved grandma with breast cancer to my father with Hodgkins and finally the day it was said to me.

I know it is terrible and difficult news that your mind is railing against while repeating it on a never ending loop inside the part of your skull that can carry words in an echo chamber. It really is shattering. But it is not the worst thing that is going to happen. Not by a long shot. No, something far more horrible is within reach.

You will lose friends and/or family.

Take a deep breath.

Every article, essay or story about cancer starts with this warning. It should be added to every chronic illness as well. No matter how many times I read these words, I am still unprepared to deal with the reality of someone either openly or covertly ending their relationship with me because I have cancer.

It had happened to my first husband when he was diagnosed with end stage pancreatic-liver cancer. It is never the people you expect to ditch you. Nope. It’s some of the ones who you felt sure about. The ones who swore at sometime, somewhere, to be with you through thick or thin. Like many things, oaths, the life blood of my Celtic heritage aren’t what they use to be. It will hurt when the relationship withers and dies. There is nothing you can do about that. Except to acknowledge it and live through the deep sadness and betrayal of abandonment. Oh, you will feel betrayed, hurt and angry. I recommend singing soul wrenching music, sweating out your emotions through dancing if you are able and take up drumming. All three of these give you a physical outlet to pound something without hurting anyone. The anger moves on. The betrayals, I am still working on.

For anyone contemplating leaving a comment about forgiveness, please stop yourself. I won’t publish the comment. When a friend or family member walks out on you, it is normal to be angry and hurt. You should not give them a free second chance to hurt and abandon you. I loathe “forgiveness culture” where the ultimate absurdity is to forgive yourself. I have a litmus test for “pop” psychology and New Age-isms. If my grandmother never used an idea like “self forgiveness” and would have called it ridiculous, it is just that. Ridiculous. Getting cancer is NOT something I need to forgive myself for. Having a lousy friend or weak family member is not about me either. It’s on them to find forgiveness. It is not on me to pass out “I forgive you’s,” with the bizarre notion that it is beneficial for ME to forgive THEM. It’s long overdue to call BS on that practice. I have not once, not ever, felt better, freer or more loving after forgiving someone who hurt me without any effort on their part to correct the transgression.

If they want to ask for my forgiveness, that’s a whole different thing. It always starts with fourteen words, from them, “I was wrong. I am sorry. What can I do to make this right?” Just so you know, these are the words I use when it has been me who hurt someone else. It is only the start. Forgiveness should be earned, just like trust. Mostly because trust has been broken when you hurt someone.

Also for anyone who felt the need to leave a friend or relative who got cancer or any other illness please don’t leave your reasons on this post. I won’t approve those either. There are a minuscule of necessary exceptions for when leaving is appropriate. Sometimes Dementia and Alzheimer’s fit that exception. But, please, they are exceptions, not the rule. You may have had equally difficult problems or worse things going on in your own life when your friend got sick or when they had yet another complication to their serious illness. We all get overwhelmed. Here’s the thing, my cancer really is all about me. I own it. I share when I am asked by my Neuroendocrine cancer/carcinoid community or an individual asks about it, or I need to vent. I vent infrequently these days. So, when I hear, “I can not handle your cancer, it’s just too hard for me. I can’t be your friend anymore,” I want to know in what way are they handling MY cancer. I checked. It is impossible to give anyone else my cancer to handle for me.

Last are the ones who will say they are only interested in relationships that are reciprocal. Well, WOW. Not once in my life has any relationship been completely reciprocal at all times. Sometimes I am giving more time and energy and sometimes it is the other person doing that, cancer or no cancer. Life does not balance out every second of the day. Sometimes it doesn’t balance out for months or even years. I am not a good score keeper on this front. Perhaps that is one of the secrets of success to my beloved husband’s and my marriage. We never keep score and we are co-conspirators for life, facing the world together with our hands intertwined shoulder to shoulder. Not once have we ever talked about reciprocation or equity. We each do our best for us everyday, however much that is.

What do I or anyone with an illness want? How about just stick around. We may be gone for long bouts of time and that can be annoying and frustrating. My cancer is rare, slow growing and currently incurable. With my current standing, it is possible for me to live a long time. I could also be sick in varying degrees of seriousness for much of that time due to my cancer or other diseases. I have more than one illness because…well…the universe is not fair. We who are ill, want to be welcomed to join you when we physically can. We want to know that you have the resilience to let us be gone when our ilłness forces us to be unavailable. It is the ultimate gift you can give us. My best example is this: We don’t walk out on life because winter lasts longer than we like. When spring comes we are happy to just have it visit us once again. My illness is like that winter that can drag on for too long or reappears after spring has started. It is very inconvenient and unsettling. I know the vast majority of my friends stick out those wintery days with the surety that spring will come and put an end to winter, hoping that summer will be even sweeter and easier. I would ask for the same patience regarding the weather of mine or anyone’s illness.

For every friend and family member who has stuck it out with chronically or long diagnosed sick people, I thank you with all my heart and soul. You did not demand reciprocity. Instead you gave real love, compassion and the open understanding that welcomes us when we are able and gently waits for us when we are unable. Being this kind of friend is rare and wonderful. I believe it reveals the best part of people and life.

Blessings,
Bridget Robertson

January 2,

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There are a few events that make clear dividing marks between before and after. There is no bridge that can be constructed to get back to or even visit that before. A select few life events will change your very core in irrevocable ways. My soul was and still is altered without my ever having given consent.

January 2, is the anniversary of my first husband’s death. He had been diagnosed two and a half months earlier with pancreatic liver cancer. Oncologists kept calling it very serious. My mother, a retired nurse and my stepfather a retired doctor were both given access to his records. It was my stepfather who used the words “end stage” from the beginning. My mother, in full nurse mode made sure I could give insulin injections, change bile bags on a liver stent that never quite worked, change out IV’s, checking the line flow that included anything from from antibiotics to feeding bags. She had everything scheduled for me and there was a visiting nurse allowed by my insurance to stop in for fifteen minutes twice a week. I had a full handle on all necessary home hospital equipment as his needs changed very rapidly. I had worked out getting him to daily chemo and every other horrid test and surgery they proposed. I knew most, if any of this would not help him. But, it was his life and his decision. It was out of love that I supported any one he made.

On December 22 hospice took over, a nurse was now three times a week. I was able to get someone to assist in his bathing and personal care twice a week. I went out on full, no pay leave. I had been able to work very few hours per week until then. His family kept insisting I was going to lose my job…as if that mattered. Or tell me I would need to wait to take time for “the end”. You have no idea what it took to explain to them that it had been the end since the diagnosis.

When you midwife someone you love through death, being there daily with very little help, reality changes. Forever. Death moves in with you without invitation and pulls up a chair throughout each day. I knew to make it an ally. It took very little time for me to know he would die soon. Death would now  be my companion for life. Not because he was dying, because death initiates you as its life companion.  I was and am acutely aware of it beside me for all my remaining days in this world. Death serves a purpose. Life is suppose to have a beginning, middle and ending. In my religion the Goddess that midwifes you into life, always stays with you through it including midwifing your own death. Since then,  I both see and communicate daily with her.

If I believed in a devil it would be grief. It pays no heed to it being a quarter of a century later. Nor that I am very happily remarried. It made that demarcation of before and after. It runs a course that has very nasty timing. Rogue waves would be easier to predict. The only sure thing is that it will come out every January 2. The body is how grief keeps score. Time does let dates slip from your mind, but the body will not. If I am lucky unexplained tears will be limited to this one day. Other years it starts sometime in December. As I search for the cause of this body weeping, eventually I consult a calendar and from deep in my soul the date of his death with bubble up. Grief is tenacious. It will grip you at will and nothing will hurry it until it has completed this round. I have learned to sit back and brace my cells while it runs this emotional roller coaster in my body. And it is my body that bears the brunt of these visits. There is a large crack somewhere inside me that allows entry and both generates and receives the blast of pain, loss and drowning. None of this is about my first husband. No, it is about what happened to me as I focused solely on his death assuring myself I could process my own feelings at some future date. It was a horrible bargain to make. I had no idea that the future date would be a recurring one.

I now have cancer. I promise you no matter how terrible my days may be, this side of the fence is a cake walk compared to being the spouse care taking. I have an exceptional husband. One who both knew and fully accepted that my old grief mixed with my own cancer would be debilitating at what is suppose to be the ” happiest time of the year”. When he worked in retail it was easier . Anyone who works during Christmas season in retail, pretty much hates the holidays by the the third of December. There is no pressure to be happy. Since leaving retail, he still watches and comforts me when that grief makes it chaotic appearance. He is rare and I know that.

Grief will move on. For a few days it is being stuck in glue that demands tears, quiet and endless patience as it racks me with that pain and mental mixed with emotional agony that has no basis in my disease. No, I can’t find all the words to explain the debilitation. There is no treatment other than deciding to head straight through it. Anything else only makes it worse. Grief also has many other faces. In the midst of this pain I can find myself feeling a strange invincibility. It is a dangerous yet necessary task to live that out as well. Other “insignificant” life chores will pull at you. In some absurd perception, you refuse to do them with a daring, demanding them to attempt their worst. This part of grief knows nothing would be worse than what has already happened. It is a boldness born of living through a terrible event that causes this recklessness. I did tell a Senior Vice President at my job when I returned the first year there was nothing he could do including firing me that would come close to what I had been through and challenged him to do whatever. He didn’t and stayed wary of me for over a year. I don’t recommend that response, but it may be inevitable to get others to understand grief. Oh, and honestly there is no one, no seminar, no therapy, herb, essential oil, no spiritual guide, book , technique, meditation or wisdom that will make this better.

It’s January 2, and this is what is.

Bridget